History

Thursday, April 30, 2009 7:47 AM CDT

Macy had a checkup today on her sweet little heart. As Macy has gotten older, it has been easier to discuss the appointments with her ahead of time. She was nervous about the appointment (and so was I for that matter!), but we told her that the appointment would not be anything painful.

Notice her missing front tooth in the picture. It is the third tooth that she has lost!

The EKG is always what Macy worries the most about. I bargained with her and told her I would put her "stickers" on instead of the nurse. Macy felt much better about that. Yet, she still was a little unsure when the cords and wires got all hooked up. The nurse let her keep these stickers and she is taking them to show and tell at school this week to tell her friends about her appointment.

After the EKG, it was time for Macy's echo (sonogram). She stayed really calm during the whole echo. I wish I could say the same for myself. In spite of feeling great about Macy's health each day outside of these appointments, it is really hard to maintain calmness during the appointments.

While the echo was going on, the sonographer was so quiet while she worked. She always is quiet during these echos. I am always trying to read her thoughts- unsuccessfully of course. We held our breath and waited, waited, waited for the results.

Macy's doctor came back to the room. She told us that Macy's heart looked good. And, she cleared Macy until the summer of 2010! It was such a blessing to get that good report! Layton and I agreed that with each appointment, and with each good report that God may bless us with in the future, we should never take the good news for granted. It should be celebrated each time!!!

As far as Macy's other medical status, we continue to fight the mystery of Macy's ENT issues. First of all, the doctor told us today that Macy has already lost one of her ear tubes. If you remember, this is her third set. And, this time we put in (supposidely) permanent tubes. The permenant tubes were supposed to last 2-3 years (as opposed to the 10-12 months her non-permenant tubes have lasted) and the doctor would surgically remove then at that time. However, less than three months since her surgery, her little ear has already rid of her left tube.

And, she already has an ear infection.
AUGH!

But, the real reason we went to the doctor today was a followup on Macy's constant runny nose. She has been on an antibiotic for 21 days to clear up her constant runny nose. Nevermind that she has more or less had this runny nose for - literally- years now. And, yet the cause seems to be a mystery to our pediatrician, our ENT, and our allergist. And, I truly respect these physicians. Our pediatrician has been our right hand man since Macy was born, and if anyone is willing to figure this out, she will!

Macy stopped her antibiotic last Monday. By Saturday, her nose was a mess again. So, we started back on two more weeks of antibiotics. We see the allergist next week. The pediatrician recommended that the allergist give her a CAT scan of her sinuses and draw blood to check for low immunity.

Which would be better out of the two diagnoses? I don't know. With low immunity, we can't really fix it. Macy may outgrow it over time. Until then, she would take a low dose antibiotic 1-2 each week indefinitely to fight the congestion. However, there would be no surgery!

If the CAT scan shows Sinusitus (clogged sinuses), she would need surgery to clean out her sinuses and rework her internal plumbing so that she wouldn't continue to get clogged all the time. However, my Dad has had this surgery, and it is not a fun recovery. But, the surgery would likely fix the problem.

So, I don't have a specific prayer request other than that God will allow the doctor's to figure out the cause of this problem and that the least invasive procedure possible can make fix it for Macy.
Okay, enough medical talk!

Speaking of medical mystery...

Macy saw a commercial for the show "Mystery Diagnosis" the other day. She immediately perked up, and talked about the advertisement- in detail- for the rest of the day. She kept asking me to record that show for her.

I really debated the situation. We try to be very discerning about what the Girls watch on TV. I didn't know if the show would be appropriate for Macy since is was kind of scary and talked in depth about people's illnesses. However, I also took into account that Macy had seen a lot of her own medical scariness in her little life.

We sat down and watched an episode of the show together. Macy was glued to the TV. She had so many questions about the episode (a baby was sick with a myserious illness.) The rest of the day, she kept talking about her new "favorite show." She really wanted to watch it again.
The next morning, we watched another one together. It came time to turn it off and go to school. Macy begged me to let her watch a little longer, and she wanted to be late to school.

The season premiere on the new season was tonight. It was past her bedtime. I told her I would record it, and she wants me to wake her up early before school tomorrow so she can watch it.

Now, let me just state that this is a child who has never cared much for TV.

She has never really liked cartoons, and only a small handful of shows have ever kept her attention. But, her heart connects to these people that are sick on the show.

So for that reason, we keep watching it together (minus all the creepy Discovery Health Channel commercials, of course!) I told Macy that maybe she would be a doctor or a nurse since she has such a personal connection with people who were sick. She agreed!

Sunday, March 22, 2009 11:19 PM CDT

Macy continues to be her busy, growing self. And, we are so thankful for that each day. Just the other day, I opened the mail to find a letter from her cardiologist. It said, "It is time for Macy's cardiac checkup." Funny how we haven't even been concered about Macy's heart in a while, and yet that letter suddenly had a knot in my stomach. Will a day come in Macy's lifetime where we aren't a ball of nerves at her cardiac checkups- even when all the outwards signs seem great? Only God will bring us the peace that comes with knowning He is in charge of those situations. So, we are scheduled to have Macy's heart checkup at the end of April.
Since our last journal entry, Ansley and Macy had allergy testing. As it turns out, Ansley is allergic to all kinds of things including cats, dogs, trees, grass, etc. But, Macy was not allergic to anything.
Even with the "no allergy" diagnosis, Macy continues to struggle daily with nasal issues. Five ENT surgeries and two allergy testings later, we still do not know the cause. Could it be that her "internal plumbing" isn't up to par? Or could it be low immunity? We continue to discuss these things with our ENT. In spite of the daily frustration of the constant nasal issues, we are so thankful that her overall health is well. In the big picture of the last 5 1/2 years with Macy, these current issues are so minor to the struggles God has brought our family through regarding Macy's health.
Macy is continuing with her speech and occupational therapies. I think Macy considers them in the extracurricular category like gymnastics or swimming. She loves going to her therapists.
We continue to ask for your prayers for Macy's heart and kidney function to continue normally as well as improvement in her growth, speech, and nasal issues.
We will update after her heart appointment the last week in April. May God bless you family!

Tuesday, January 13, 2009 10:06 PM CST

Macy continues to grow into a big girl everyday. Honestly, I can't believe how grown up she has become just in this past year. Somehow, this little stick of dynamite has lost her first tooth! Yes, ladies and gentlemen, she just turned five in November. That might not be early to you, but we thought it was really early.
Even funnier... she pulled her own tooth. And, she could not have been more proud. Macy was well aware of the tooth fairy from her big sister. She was really excited the next morning to see what the tooth fairy had left in her tooth pillow.
That same morning, our little ear, nose, and throat surgery professional daughter had her third set of ear tubes put in her ears. This is her fifth ENT surgical procedure- three sets of ear tubes, an adenoidectomy, and a tonsillectomy. Between Macy and Emerson, I am pretty sure we have paid for a good part of our doctor's house!
We headed bright (well it was still dark actually) and early to the surgery center.
Our little Macy is getting so big and her medical history has stabilized enough that this was the first surgery she could have in an outpatient center and not at an actual hospital. Whoo hoo!
This time, Macy got something called T-tubes. They are a more permenant tube for children who have long-term ear infections. They are intended two stay in her ears for two to three years, and then the doctor will go in and remove them.
As always, we are so thankful for ear tubes. The tubes allow Macy to avoid one ear infection after another and help her hearing to not be impaired because of all the fluid in her ear.
As always, Macy was amazing during the whole procedure. However, Macy always has a hard time coming off the anesthesia. She was not feeling great and really struggling until she finally took a nap around lunchtime. When she woke up, she was back to her normal silly and smiley self.
We will check her hearing again in six weeks to see if her ears are clear and she can hear better.
Macy will also being private speech therapy this week in addition to taking speech at our elementary school.
Have a happy and blessed 2009!

Thursday, November 6, 2008 8:32 PM CST

Today is Macy's fifth birthday. She is five years old! We can't believe it! Layton and I can't believe how far she has come and how much our family has learned in the past five years. We are excited for many more years with Macy.
She truly is a great kid, and we are all blessed by the constant joy that she brings into this family. Macy is full of life, she TRULY finds happiness in the little things each day, and I admire her happy, positve personality!
I can remember five years ago today very vividly. I am so thankful to be on this side of the five years. Our family has had so many wonderful memories over the past five years. But, in all honesty, it is nice to be able to step back and see how Macy has grown and developed and matured after all of those scary doctors appointments and many hours of medication and therapy. Most imporantly, it is amazing to be a part of Macy's life and to see the way that people have prayed for her and God has blessed her!
Macy, we love you and are so proud of the girl you have become! God has great things in store for you!
Happy birthday!

Wednesday, September 10, 2008 12:49 AM CDT

Macy had her bloodwork on Monday morning. With our frequent bloodwork lately, I was really dreading the moment she realized where we were going that day.

Macy's Mimi was so great to plan ahead. The day before, mom Mom had dropped off a goody-bag of things for Macy to play with while we were at the doctor's office. We kept the bag a surprise until we got to the doctor.

As soon as we pulled in the parking lot, Macy said in a very shaky voice. "What are they going to do to me?"

Ugh. Layton and I hated that moment for her. I quickly whipped out the prize bag from Mimi. It was the perfect distraction. Macy pulled out some fun things including new pink sparkly tennis shoes, candy, colored pencils and paper, and other fun goodies. It was a real treat- espeically since one of the nurses was delayed and we waited for thirty minutes! But by the grace of God, Macy was calm.

Even when we were called back and they put the rubberband on her arm to find the vein, Macy stayed calm and told the nurse about all her new treats. But, once the needle came out of the bag, Macy panicked. Luckily, the bloodwork went quickly.

I know, easy for me to say since I am not Macy.

Yesterday afternoon, my phone showed the pediatrician calling. When I answered the phone, it was not the nurse- but the pediatrician herself. I was thinking it was either a really good thing or a really bad thing that she decided to call me herself.

The peditrician told me that Macy's bloodwork looked great! Her bicarbonate number (the main kidney number we always watch) was 23. Normal numbers are between: 21-32. I felt truly blessed to hear the news. Macy has been off of her medicine for about 2 months, so this was an accurate reading of her kidney function without medicine!

For anyone reading who doesn't know all of Macy's history, she had a stroke after her first heart surgery. Her kidneys shut down, and Macy went on dialysis at about 5 weeks old to restart her kidneys. Shortly after she finished dialysis, her bloodwork showed that low bicarbonate numbers (I won't bore you with what that means), but we knew her kidneys had been damaged. The doctors told us that if her kidneys were ever to heal, it would be within the first couple of months after the stroke.

Following the stroke, Macy's kidney numbers continued looked low, and we were told that she would most likely always be on her kidney medication 3x a day.

I say all of that to set the stage that healing was very unlikely. So, we believe that God is the ONLY reason her kidneys are functioning correctly without medication at this point. And, after years of abnormal numbers and many other chaotic medical appointments, our family feels truly blessed to see progress with Macy's kidneys.

Thank you for praying for her- some of you now have been praying for five years for Macy. And, what a testimony to God her life has been.

Since you are so diligent in being prayerful, I want to pass on another family that needs your prayers. The little boy's name is Cole.
http://www.caringbridge.org/visit/coleruotsala
Someone sent me his website, and I can't quit thinking about his family. This little boy definitely needs prayers!

Wednesday, September 10, 2008 12:49 AM CDT

Wednesday, September 3, 2008 12:52 AM CDT

Macy had bloodwork to check her current kidney function last Monday. We were crossing our fingers for bloodwork that continued to show Macy's kidneys functioning normally without her medication.
Unfortunately, the bloodwork showed that something went wrong during the actual retrieval of the blood. While it isn't common (but is has happened to us before), sometimes the red blood cells don't seperate correctly and the bloodwork is not accurate. Because of this, none of Macy's bloodwork came back normal.
In spite of the crazy numbers we got back, the nephrologist and pediatrican assured us they were not accurate. So, that is a blessing that Macy's numbers were not all over the "abnormal" map.
What is unfortunate is that Macy will need to have her blood drawn again to check her kidneys. Let me just tell you that getting a 4 1/2 year old to give blood (even if she has done it her whole life) is never easy. Now, as soon as we pull up to the office, she knows. We don't talk about it beforehand because if gives her huge anxiety. At the same time, we always tell her the truth if she asks. With so many appointments, we always tell her when there are "no needles." On these bloodwork appointments, I can't lie to her. So, when she realizes where we are, we are honest with her. How to handle the "timing" of telling her is really difficult. We always try to keep her mind busy and have some type of treat for afterwards. But, that doesn't always help matters.
Macy is scheduled for more bloodwork on Monday. We ask for prayers that:

* her anxiety level will be low
* the blood draw will be successful
* all of her bloodwork will look normal.

I will update towards the end of next week when we get the bloodwork results back.

Saturday, July 26, 2008 8:18 AM CDT

There is a smile on my face.
Macy's kidney bloodwork was normal!

Since Macy's stroke at 3 weeks of age, Macy has always had to take a medication for her kidneys to regulate the sodium in her bloodstream. The doctor had told us that IF her kidneys were to ever regain this function on their own, it would most likely be within the first months after the stroke - or not at all.

Since she has been taking her medicine 3x a day for almost five years, the plan of a "full recovery" had pretty much gone away from our minds. Every couple of months, we test Macy's blood (never a fun experience!) and her kidney numbers in this area are always abnormally low - even on medication (normal range: 21-32/ Macy's range: 13-18). So, we have kept giving the medicine.

However two months ago, while still on her medicine, Macy's kidney number were in the normal range. We wondered if it was a fluke. So, her kidney doctor had us pull her off the medicine for one dose and have her tested. Her numbers came in at 23. Whoo hoo!

So, our doctor had us keep her off medicine for a week and a half. Then, last Tuesday we tested again. I really was curious to see what the numbers would be since her medicine would have been out of her system for well over a week.

And, guess what?
Her number was a 24 (normal: 21-32)!

What a true blessing from God! So easily, this number could have been in the low range again. According to medical likeliness, she should have abnormal kidney function the rest of her life.
But, as we have learned, God sometimes has other plans.
And, we are SO thankful to God for Macy's normal kidney numbers.

Unfortunately for Macy, this will continue to mean more frequent testing. We will keep her off medicine for a month (yeah!) and then test again (boo!).
We will deal with that in a month.
But, for today, we are happy for this blessing!

In other Macy news, she had her occupational therapy consult last week. Macy practiced handwriting and other games using her fine motor skills. Although I usually don't notice Macy's tightness in her right hand, these games really highlighted it. Her right hand seemed way less coordinated than her left. I think she "hides" it well because she uses her right hand all the time- just as an assistant to her left hand. The OT said she would like to see Macy twice a week (where does this fit in the crazy scheule???) and work on stregthening her right arm muscles and developing more coordination in her right arm.

Macy really enjoyed the session because it was full of fun games. (She did NOT like OT as a baby, so this is a much smoother experience!) So, we will begin her sessions of OT next week, and then her speech classes will begin in September.

I will update after our bloodwork in a month.
God bless you!

Tuesday, July 1, 2008 4:14 PM CDT

I wanted to post a quick update on Macy's bloodwork. For the first time in her little life, Macy's bloodwork showed normal kidney function!!! This was tested without even taking her kidney medication that morning.
I don't want to jump the gun - we know that this could have just been a one-time thing. However, because of the normal readings, Macy's nephrologist would like to take her off medicine for a week, then test her again. If the numbers are normal, then we will keep her off for a month, and we will test her again.
Macy will be less than thrilled for all of the possible bloodwork, but a couple of normal readings in a row could mean great things for Macy. That would mean she could stop her 3x daily medication!
Even more imporantly, a couple of normal readings could mean that Macy's kidneys were functioning normally. After her stroke, we were told that her kidneys would likely heal within the first couple of months if they were going to heal at all. Otherwise, we could expect for her to take medication throughout the day for the rest of her life.
So, for Macy's kidneys to heal at this point would be a gracious gift from God!
We are praying for Macy's bloodwork to show normal kidney function. We will likely test her around the middle of July.
I will let you kow the outcome as well as how her Occupational Therapy evaluation goes (also mid-July.)

Friday, May 30, 2008 2:07 PM CDT

We just made it in from Macy's two appointments this morning. Her first dr. appointment was with the cardiologist. I have to be honest, even with Macy being healthy and full of life each day, I am filled with anxiety right before her cardiology appointments. These appointments make both Layton and I a little unnverved. Overall, Layton tends to be such a laid-back person, but anxiety is something that I struggle with. So, I have to really just "not think about" Macy's cardiology appointment ahead of time. I would never want my anxiety to be apparent to Macy. But, I can tell she even gets nervous before these apointments. She always asks a lot of questions before the appointments.
As a little incentive for Macy, we have taken a present for her to open at the last two heart appointments. This morning as we were leaving, Macy said, "Will I get to open my present after my surgery?" It broke my heart to hear her think that this was "just another day of surgery" in her mind.
On to the appointment... Macy freaked out during her EKG (painless, but looks scary because they place stickers and cords all over body to check her heart beat and pressures.)
She did calm down though in the presence of our cardiologist (our dr. is such a calm person and great with kids!) Macy had her echocardiagram done (sonogram of her heart and surrounding area). She laid still and did great. Layton, Emerson, and I were by her side (and I was full of butterflies waiting for the report.)
We met back with the doctor, and she said Macy's heart looked the same as last time. Her left ventricle was still at a good size and pumoing correctly. There was still a little narrowing in her aorta (it has always been there since her first heart repair), but it had not changed in size and was still minor. Overall, we will continue to watch that narrowing like we always have, but her heart function looked great and the doctor told her to come back in a year.
Once again, God has blessed Macy with a good report, and we are thankful to Him for that. We will continue to pray for a a healthy, well-functioning heart.
Macy's second appointment was at a different hospital with her developmental pediatrician. These appts. are so interesting. The doctor played lots of games with Macy including books and flashcards. She asked her to identify numbers, letters, size differences of shapes, etc. The dr. had Macy try to draw certain shapes, lines, and her name. The dr. gathered all the information and assessed Macy based off other kids her age.
The dr. felt better about Macy's attention span at this appointment than at our last appointment. Also, Macy's vocabulary and knowledge of numbers, letters, and word meanings was ranked in the normal range! She scored around 4 years, 11 months old to 5 years, 2 months old in most areas. We felt really good about that.
Where Macy did struggle was her ability to write what she knows. She wrote her name backwards. In addition, her letters and shapes were below average based off her age. The dr.'s recommendation is for Macy to have occupational therapy this summer to work on her hand control.
In a couple of weeks, we will have Macy's bloodwork tested to check her kidney function and growth hormone level. We will keep you updated after those bloodwork results come back.
Thank you for your prayers!

Wednesday, May 28, 2008 6:57 AM CDT

Leave it to me to be lagging behind on the journal entries. The end of both girls'schools has us staying busy these days... parties, field trips, and other events that need volunteers!
Anyhow, I wanted to let you know that Macy's regular checkup with our cardiologist is this Friday. She will see the cardiologist, and then we will head over to another hospital for Macy's appointment with her developmental pediatrician. Doesn't that all sound fun (especially with a toddler in the mix?)
We ask that you pray for Macy's heart to look and sound completely healthy. Even though these are routine and expected to look fine, I still get anxious as the appointments approach. When her last heart surgery popped on the radar, Macy was not giving us any signs of concern prior to the appointment. I think that I why I let myself feel anxious before these apointments now. Maybe if we can get about five years of "normal, uncomplicated" appointments under our belt, I can go into future appointments without thinking twice.
Anyhow, we thank you for continuing to pray for Macy's health and well-being. I will update you after her appointments.

Wednesday, April 30, 2008 2:24 PM CDT

Today, Macy saw her endocrinologist (growth doctor) and nephrologist (kidney doctor.) Let me start by saying how blessed we are to have such a great group of doctors for Macy. They are all in one hospital, and they all communicate well with each other.
When we get to the hospital, we ran into Macy's child life specialist (from her surgeries) and the nurse from Macy's cardiac surgery. Immediately, both ladies stop and talk with Macy and our family. It is nice to know that Macy is more than a face to each of these people. They take their time with her, and it seems to make her feel more relaxed!
Macy's growth doctor had nothing but good things to say about her growth. In November, Macy was 28 pounds and 33 inches. Today, she was 30 pounds and 34.7 inches. This was great growth for her, and I am proud to say for the first time ever her weight and height are both on a normal growth. She is around the 5% on the growth chart for height and weight, and we are so excited! We will see Macy's growth doctor again in 3 1/2 months. Between now and then, Macy will have her annual bloodwork to check her growth homone levels and thyroid levels.
With the kidney doctor, he reviewed her most recent bloodwork. Last time, her bloodwork showed a normal reading for her bicarbonate levels (these are the ones that are always low on her and qualify her as having "Renal Tubular Acidosis"- too much acidity in the blood.) Even on medication, her numbers are ALWAYS low. However, the last lab work looked in the normal range! Of course, she was on her medication.
In a couple weeks, we are going to run her blood work again and see how her numbers look WITHOUT medicine. While it is likely that her body will never function normally in this area, we are asking for a MIRACLE from God for those numbers to look normal.
If they look normal (yeah!), than the bummer for Macy is she will probably have frequent bloodwork for a while to monitor her blood without medicine and see if she is ready to wean off of it. If the numbers are low (which the doctor tells us is most likely), then she will continue to stay on her medicine.
All in her, her recent growth is a great indicator that her blood is not too acidic (good growth goes hand in hand with bloodwork that is pH balanced). So, even though we wish she could avoid the 3x daily medicine, we are thankful it is doing it's job so far.
We will see the kidney doctor in 6 months. Between now and then, he would like Macy to have a renal sonogram and a bone density scan. These are both just to establish a baseline for her kidneys and bones that we can watch as she grows.
We were glad for the good visits. In spite of Macy being a typical busy and happy 4 year old, I always find myself holding my breath during these appointments.
It is always a blessing from God to get a good health report!

Friday, April 25, 2008 11:55 AM CDT

Macy had her spring program and carnival at school last night. The girls were flowers and the boys were honeybees. It was really cute, and Macy was her usual "ham it up" self on the front row! After the show, there were bounce houses, pony rides, and a petting zoo. Emerson, our little animal lover, was in heaven with all of the animals to pet!
Macy's checkup with her growth doctor and kidney doctor are next week. As I have mentioned before, her kidney medicine being regulated goes hand in hand with how well she does or does not grow. Since we do not take her blood as often as each month anymore (to check for low kidney numbers), sometimes the first indicator of needing to up her kidney medication is poor growth. I will be very curious to see what each doctor says about her growth.
In addition, we have started Macy and Emerson on allergy medicine. Her last allergy testing did not show any allergies. However, Macy's ENT said that often allergies do not show up on testing until after age five. Even with the tonsils gone, Macy has started her chronic runny nose again. It was gone for about 5 weeks after surgery and then came back with a vengance. With it being allergy season, we are trying out a new medication to see if it works for either girl. Only time will tell...

Wednesday, April 16, 2008 7:35 PM CDT

We have another ENT surgery under our belt since the last posting. Emerson had tubes put in her ears about two weeks ago. She had eight double ear infections since the fall, and the doctor (and Layton and I!) decided we were more than ready to put a stop to the constant ear infections. The tubes seem to be doing their job so far. Since the weekend, Emerson and Macy have had runny noses and other cold symptons. When I took Emerson in for her 18 month checkup yesterday, our pediatrician said that her ear tubes looked great and seemed to be working nicely in spite of the cold.
Yesterday afternoon, Emerson and Macy started getting sick with the stomach bug. Macy was throwing up throughout the night (this is her third round of the stomach virus since the beginning of the year!), and the stomach bug hit Emerson on the other end of her little body. Needless to say, we have been washing clothes and sheets all day. However, the girls seem to be on the mend today.
Macy will see the nephrologist (kidneys) and the endocrinologist (growth hormone) in two weeks. I will post on the outcome of those visits.
In other news, Macy and I went to see High School Musical on Ice. That girl is almost obsessed with the characters of the movie. She loves to play pretend house and the characters are her brothers and sisters.
Macy was in awe at HSM on ice. We had a great time on our girls day together!
Ansley is growing up too fast. She has lost four teeth now. Layton pulled her two front top teeth last night. She looks so grown up with her teeth missing.
Emerson is climbing and talking and busy all the time. I found her climbing on the kitchen table. Another night,she was sitting on Layton's desk. She keeps us on our toes!
A funny Macy story: About a month ago, we drove by a Red Lobster restaurant. (Actually, we probably drive by it often, but the girls have never said anything about it.) Well on this particular day, Ansley read the sign out loud. Then, Ansley and Macy wanted to know what it was, what kind of food they had, and why we never had taken them to eat there. Macy was really hung up on it, and she kept talking about it. So, we went home and Googled a red lobster for her to look at.
Since then, Macy talks about the restaurant everytime we drive by it. Each time, she asks to eat at the "Red Lasta" (in her words.)
Honestly, we haven't eaten there in years, and we haven't missed it at all. But, Macy was persistent.
On Saturday, she saw it and said, "Please can we eat at the Red Lasta today?" We told her that we would eat lunch there after Ansley's softball game. I was NOT looking forward to it.
We took the girls to RL, and were the only people under 65 years of age in there on a Saturday afternoon! In spite of us being the noisiest party in there, we really did have fun.
Macy tried to order the macaroni and cheese. We told her that since she had begged to eat at the RL, she needed to eat something "fishy."
The popcorn shrimp was a hit with the girls. We even looked like corny tourists taking a picture out front of the RL for Macy to keep. All in all, it really made her day!

Sunday, March 23, 2008 2:21 PM CDT

It is another chilly Easter in Texas. We have had beautiful weather this week, but today it is cold and overcast. The girls have been on Spring Break this past week. We have stayed busy coloring eggs, go to the zoo, a trip to library, and hunting Easter eggs.
Macy was back to herself about two weeks after her tonsillectomy. Despite all of the horror stories we had heard about the recovery, it really wasn't too bad. Macy is pretty tough though, and we thought she did great. Since her surgery, (knock on wood!) she had not had one runny nose. This is amazing for her! In addition, Macy's voice isn't muffled and her speech is much better. She is not even snoring at night! We are really pleased at how well she has done since her surgery! What a blessing!
That is about all to report from our household. I do have a funny Macy story to share with you:
On St. Patrick's Day, we had told the girls that people wore green so that no one would pinch them. They had a lot of questions like, "Why do people pinch each other?" "Isn't it mean to pinch people?" and so on.
Well, as soon as Macy got her green shirt on, she walked over to Ansley (who did not yet have green on) and said in a nice, playful voice, "I am going to punch you!"
Sure enough, she hauled off and sucker-punched Ansley in the stomach. Of course, Ansley starts crying. We all looked at Macy- stunned- (whining and crying are common in our household, but NOT punching)- and we asked why she did it. Macy said, "I punched her because she wasn't wearing green!" Oops. I guess we didn't say "pinch" clearly enough.

Thursday, February 28, 2008 8:35 PM CST

We are a week out from surgery, and Macy is doing really well. I had heard horror stories about tonsil surgery, but we have been pleasantly surprised. The first couple of days after surgery, Macy was almost her normal self. She was eating a lot and playing and being silly. After about 4-5 days, she started to slow down a little and she hasn't had much of an appetite since then. She plays and doesn't complain too much of a sore throat, but she is not her usual, energetic self. She has come off one of her medicines, but she is still on one for pain every four hours. That means we are STILL setting the alarm and getting up every four hours in the night for pain medicines. Yuck!
Two nights ago, Macy had her worst night yet. We were up until 3am and then got fitful sleep with her until 5am when she started crying again. However, the rest of the time has not been too bad.
We are hoping by early next week she can be back to normal old Macy.
Emerson had a double ear infection at the doctor this week. It was her seventhh set since the fall, and she is going to the ENT in a couple of weeks. They will do a hearing test and decide if she needs tubes. With all of these ENT surgeries under our belt, I wish Layton had going into pediatric ear, nose, and throat practice!
Thanks for your continued prayers!

Friday, February 22, 2008 7:11 PM CST

The tonsil fairy came to visit Macy last night in her hospital bed. She was so excited to get some stick-on earrings!
We went and picked up Layton and Macy from the hospital early this morning. Macy was really ready to come home. Since we got home this morning, Macy has been non-stop all day. Honestly, we can't get her to even sit down and watch a TV show. She has been doing crafts, playing, and eating. This afternoon she had four little friends show up at different times throughout the afternoon to check on her. Then, she got a visit from her Mimi & Popaw and a visit from Aunt Kourtney. Between the "afternoon of fun" and the little amount of sleep she got at the hospital last night, Macy looked exhausted. In spite of that, Macy was still going at full-speed. It was like she didn't know how to let herself calm down. So, Layton laid her down and she fell asleep at 6:30pm!
We are setting our alarm to give her medication through the night. The doctor said her drinking and taking medication around the clock is the best thing she can do to feel better.
We just went in and checked on her. It is so weird how quiet her room is. For such a long time, Macy has breathed loud and snored all night long. We could usually hear her breathing in her room at night when we stood in the entryway. However, tonight we had to walk right up to her and listen to hear her breathing. What a blessing it would be if she could start to have consistently better sleep at night.
I just hope she didn't overdo herself today so that she will feel yuck tomorrow. Only time will tell..

Thursday, February 21, 2008 8:45 PM CST

Macy is officially without tonsils! We are so glad to get this surgery over with! Leading up to surgery, I think Macy had psyched herself up that this was so exciting. With Ansley losing a tooth recently, Macy was comparing the two situations. Last night, I said, "Macy- tomorrow night you will not have your tonsils anymore." She jumped up and excitedly told us, "Yeah, and the tonsil fairy will come!"
We went to the hospital today to the day surgery area. Macy's surgery was bumped because of another surgery that needed to go in front of hers. So, Macy's surgery was moved to 10am. We got there at 8:30am and waited and waited and waited. It turns out the surgery in front of Macy took much longer than expected.
Our little tiny holding room included Layton, myself, Macy, Emerson, Popaw and Mimi Allison, Brittney, Jillian, and a stroller. To top that off, Macy hadn't eaten since the night before or had anything to drink since early in the morning. We kept her at bay with a fish tank on the pediatric floor, some toys, and a High School Musical Dance mat my parents brought for her to dance on.
Finally, they were ready for us. Macy did great until the nurse put a little monitor on her finger. She's had this same monitor everytime she has had surgery and it doesn't actually hurt her at all. But, it seemed to unnerve her. Soon after, Macy had some medicine, and then she was off. We saw her about 45 minutes later. She was pretty groggy after surgery and woke up furious to find the finger monitor still on her!
We asked the anesthesiologist to avoid one of the pain meds that makes her sick. He also gave her an anti-naseous medicine. The duo must have worked because she came out of anesthesia much better this time.
Macy ate like a horse this afternoon. She had three bowls of ice cream, a bowl of mac and cheese, half a popsicle, gatorade, and some pie. It was great to see her in good spirits. After the extended family had gone home and taken Emerson with them, Aunt Kourtney stopped by for a visit. Macy was glad for the visit.
Tonight, the tonsil fairy is likely to make a stop by here. We are hoping for a decent night's sleep for Macy, and it would be great to see her feel okay tomorrow. The doctor has prepared us for 10 days of "yuck." I will update tomorrow. Thank you for your prayers and concern!

Wednesday, February 20, 2008 12:08 AM CST

It has been a busy month around here. It seems like at least one person has been sick in this house at all times since Christmas time. In between those fun moments, the girls had their first sleepover at our house, and we went to the Hannah Montana movie (Macy is crazy for Hannah Montana!). There is never a dull day in this household!
Knock on wood: Tomorrow is tonsil surgery day! We have rescheduled it five times prior to now, so I am nervous to state the date and possibly jinx ourselves!
Macy had her pre-op appointment today. Since Macy had her bloodwork done two weeks ago, we didn't have to do anything "scary" today. By the way, her bloodwork tells us about her kidney function. Since birth, she has always shown an "abnormal" number in her bloodwork regarding kidney function. It indicates that her blood is always a little acidic, and that tells us her kidneys cannot properly manage this acid level. (it is important that your blood be pH balanced for proper bone growth.) Because of that, she takes a kidney medicine three times a day everyday to pH balance her blood.
However, Macy's bloodwork showed this number in the normal range two weeks ago! This is a huge blessing! She has only shown a normal reading one other time in her life! This may have just been a "lucky draw." However, we will retest it a couple of times. If the number continues to stay normal, then she might could wean off of her kidney medication. We have been under the impression she will be on this medication her entire life, so weaning from it would be a complete gift from God. We are praying that her kidneys can function normally!
We are praying for a successful surgery and a quick recovery. I will update tomorrow!
Thanks for your prayers!

Sunday, January 20, 2008 8:20 AM CST

So the tonsil planning continues...
We were trying to schedule Macy's tonsil surgery for the last week of January. The doctor only does surgery on a specific day of the week, but that is the day that Macy's school is having a big pajama/pizza party. Macy misses enough school as it is for doctor's appointments, and that girl loves school. We really hated for her to miss her party day at school. So, I talked with the surgery coordinator and tried to reschedule yet again. I am sure she is putting a big red "x" on our file at her office!
I told Layton that I was wondering if it was a sign that this surgery was never following through. Was God putting it on our hearts that this was not the route to go with Macy? In the past, we have never had this difficulty scheduling something, and we have now rescheduled the partial tonsillectomy about 5 times due to the doctor's schedule or our schedule.
Layton and I decided to do more research on if this new partial tonsillectomy was the way to go with Macy.
Last week, we took Macy to her regular ENT. I told him the whole story about the speech evaluation, the new ENT, the scope on Macy's throat, and so on. I told him that the new dr. thought Macy might have an issue with her soft pallete. (We should have likely gotten our regular ENT's opinion on the situation sooner, but life has been flying by at rapid paces!)
Our regular ENT (the one who removed Macy's adenoids last August) pulled out a report from that surgery. In it, he documented that he examined her mouth and throat during her adenoidectomy. The documentation specifically said that Macy's pallete looked normal and that she showed "no sub-mucous cleft pallete." (This is where just the inside of her mouth would have a cleft pallete- what the new doctor was thinking she might have once the tonsils were removed and he could see her throat again.)
This report really put us at ease in thinking that it was just a tonsil issue. This also made the partial tonsillectomy less of a benefit as it was to help her throat opening if the pallete posed a problem after her tonsil surgery. (Sorry for all the boring detials...)
Our ENT went on to tell us that a partial tonsillectomy has a high regrowth rate, and that is why this surgery is not common with most doctors. He highly recommended that she have a regular tonsillectomy as he said her tonsils now are bigger than ever!( Would you believe that only 15-30% of kids tonsils grow larger after an adenoidectomy and that Macy falls in that 15-30%?)
We really felt at peace with his advice considering he had already done surgery on Macy before, he always takes a conservative approach with her care, and he could verify that she did not have a soft pallete issue.
So, we are now back to the drawing board of scheduling surgery for a tonsillectomy. As like most doctors we use, he also only performs surgery at the hospital that we need on one specific day a week. So, we are trying to schedule it for sometime in February. It will be so nice to get these tonsils out and put the surgery behind us...
I will share more as we schedule it.
Thanks for your prayers as always!

Thursday, January 3, 2008 4:55 PM CST

With the holidays, life has stayed busy the past couple of weeks. We went to see Layton's family right after Christmas. We came back home and celebrated New Year's Eve with friends. On New Year's Day, Layton- the Razorback fan that he is- was able to watch the Hogs play at the Cottom Bowl.
We were scheduled for Macy's tonsils to come out on January 2nd. However, Ansley and I woke up the night before with the stomach flu. We were up sick throughout the whole night. We called the hospital early Wednesday morning to tell them we wouldn't be making it for the tonsilectomy. There was no way to make it work for Layton to take Macy and leave us at home. Also, we were afraid that Macy could get the stomach bug after surgery and then be throwing up. That would be miserable. So, once again we are trying to find a good time to do the surgery. Becuase our calendar is pretty busy in the month of January, we will likely have the surgery next month.
That is about all the news here. Our philosophy: No news is good news!!!
Happy New Year!

Saturday, December 15, 2007 7:03 AM CST

We have been bumped. Macy's tonsil surgery was bumped. It is difficult to coordinate the schedule of the surgeon, the speech pathologist (she wants to be in there to do the scope post-op), and the anesthesiologist all for the same day. Since we try to use the same anesthesia group that we have used for Macy's heart and adenoids, that narrows it down to one practice. Even more difficult than that is the fact that Macy's cardioloigst prefers we use a cardiac anesthesiologist. There are two in that specific group, but heart surgeries obviously take precedence over tonsils. So, the anesthesiologist was booked on the day we wanted to do her tonsils. We have rescheduled her tonsils for the beginning of the new year. That way, she can also avoid feeling yucky over Christmas!
Macy had her endocrinology checkup last week. Macy had grown one inch (36 inches) and gained two pounds (28 pounds) since her last appointment four months ago. We all felt really good about that growth. Macy will go back and see the endocrinologist in April.
I have a story to share about how you never know who you might run into. We had the girls at the mall taking a quick peek at Santa. To make it even more interesting was the fact that this mall is about 30 minutes from the house. We hardly ever go over there, but we had been down in Dallas for a doctor's appointment, and we went to this mall because we were close and it is one of the best malls in Dallas (in my opinion!).
As we were leaving Santa, I heard someone yelling "Summer, Summer." I turned around and this cute girl came up and said, "You might not remember me, but my name is Holly and I took care of Macy at the hospital when she was born!" I was so shocked that she had recognized us. Layton and I both remembered her. Honestly, she was one of our favorite nurses when Macy was born. You could mention her name to anyone in my family, and they would remember her (I called my sister that afternoon to tell her we had run into her and she remembered Holly, too.) Anyhow, Holly still kept up with Macy through this website. She was there with her husband and 9-month old little girl. It was really great to see her and her famly, and to know that Holly has cared enough to keep up with Macy over these past four years. It was such a blessing to see her again!
Lord willing, there won't be any new info. to share until after the holidays. We have so much to be thankful for, and I am sure that you all do, too. God bless you all and Merry Christmas!

Tuesday, December 4, 2007 4:38 PM CST

Macy saw the allergist today. The doctor did a series of allergy tests on Macy's back. Macy wasn't too thrilled with that. But, it was over as quick as it started. Would you believe it showed NO allergies? I about fell out of my chair. This girl has chronic runny nose, ear infections, and drainage. The good news is that she doesn't need daily allergy medications. We are hopeful that taking her tonsils out will not only help her speech, but also the chronic drainage. The bad news could be if the drainage doesn't clear up after her tonsils are out. Then, the allergist will test her immune system to see if she has low immunity. Depending on how low it is, she could possibly be treated long term with a low dose of antibiotics. We don't want to add any more daily medications to list if possible. So, we are praying specifically for the tonsils to clear up these issues. We are praying that after Macy's tonsils come out she will not have drainage all the time, her speech will improve, and her palette will not be a problem. Only time will tell.
Raising Macy is like being the conductor of an orchestra. There are so many different parts to her that have to be carefully guided in the right direction in order for her to be at her best. But, if one system falls short, then the others start to show problems. Right now, we have been busy getting to the root of the problem on her speech and drainage. Lord willing, we will be able to solve it with the tonsillectomy! She will be having her tonsils out in about a week and a half. I will let you know how it all goes. Please pray for a safe surgery, a quick recovery, and no complications. God bless!

Wednesday, November 28, 2007 4:00 PM CST

Since my last entry, Macy went to see the developmental pediatrician. Included in that visit was a speech assessment from a speech therapist in their clinic. The whole visit was very interesting. For her assessment, the doctor would hold up a variety of pictures and have Macy tell her what the pictures showed. She would lay out a bunch numbers and ask Macy to identify certain numbers. Other aspects of the test included identifying the smallest and largest of the items in each picture, writing the letters in her name, and putting items in order.
The doctor felt that cognitively, Macy was overall right on base with her target age group. Some of her fine motor and gross motor skills were a little behind average. However, her skills and progress seem to be normal in spite of that fact that they are a little behind schedule.
The speech therapy evaluation was also very intersting. Macy tends to have a "throaty" sound when she talks. We had hoped this would sound better after her adenoids were removed, but it hasn't changed. Her speech therapist at school has never mentioned it or given any reason as to why Macy sounds that way.
When the therapist noticed this sound and commented on it at the developmental pediatrician's office, I had a glimmer of hope that we might be barking up the right tree (finally!) to help Macy's speech.
The developmental pediatrician referred us to a speech therapist in a cranio-facial doctor's office that specializes in issues with the soft and hard palette.
Today, we had the appointment with that therapist. She asked me many questions about Macy's feeding issues as a baby, her constant ear infections, her high gag reflex, etc. After evaluating Macy's speech through games and conversation, the therapist today told us that Macy could have an abnormal soft palette. She also felt like Macy's huge tonsils (which has been an on again/ off again issue since the spring) were inhibiting her speech.
So, we left went from there to an ENT that also specializes in this area (soft and hard palettes). After a little bit of baby valium, the ENT and speech therapist put a scope in Macy's throat and nose. (Even with the medication, she was not happy about that!) Layton and I had to work together to get Macy through the procedure. The scope showed that Macy's huge tonsils were in fact a problem for her speaking. When Macy spoke (while the scope was in), her tonsils closed up and didn't allow the right amount of air though. The doctor also said these huge tonsils are likely housing bacteria that can't get through which is why Macy always has a cold.
Okay, this is a long story, I know. But, the palette could not be assessed because of the tonsil blockage. The doctor recommended an ablation. This is a partial tonsil removal. Too much tonsil could leave her opening too big (if the palette isn't big enough to fill the normal amount of space). Removing part of the tonsil will leave the airway a more normal size and then the palette can be assessed.
If the pallete is not large enough, she will need a second procedure to secure the muscles in the palette which will allow it to work properly and fill the space.
Okay, I know this is information overload. And, yes it is possibly two procedures for Macy. UGH! I don't like this pattern of yearly surgical procedures that Macy has going on. No one hates it more for Macy than Layton and me.
But, all in all, the therapist said Macy's acutal speech doesn't appear to be a big problem. Her mouth formation is appropriate and her blends and letter sounds are correct. The therapist feels that once the tonsils and possibly the palette are corrected, Macy could have normal speech.
Hallelujah!
Something in me just tells me this is the right direction to go. We have prayed about her tonsils since the spring. I feel like God is opening this door to make things better for her. This will hopefully also relieve her snorning at night and her mouth-like breathing. And, I think it would be a blessing for Macy to have better speech.
So, we are in the process of scheduling her partial-tonsilectomy. As of now, she is scheduled to have her allergies tested next week. We may move that if the ENT feels that it won't be an accurate procedure until the tonsils are gone.
I will update you when we have surgery scheduled! We ask that you pray for God to continue to lead us in the right direction to fix Macy's speech. We also are asking that you pray for the least amount of procedures possible to make her speech better. It would be such a blessing to have the tonsils removed and the palette look normal. That would be one less procedure. But, ultimately, we know God will direct us where to go in this situation.

Tuesday, November 6, 2007 3:48 PM CST

Fall is in the air, and I love it! This is always the busiest time of year for our family, and we have had a lot of fun celebrating more birthdays around here.
Ansley turned six years old yesterday, and today is Macy's fourth birthday. Honestly, I can remember them being tiny babies like it was yesterday, and now they are turning into grown-up girls.
Ansley had a pajama party on Friday night, and Macy had a ballerina party on Saturday. They had a couple of friends over from school and the neighborhood to help them celebrate. Ansley's party was full of noise and excitment as 10 kindergarten girls ate pizza, painted fingernails, played games, did a craft, and squealed a lot!!!
Macy's tutu party was outside on Saturday afternoon. Macy and her friends jumped in a bounce house, made ice cream sundaes, and played in the playhouse out back. (Right before the party started, Macy climbed out of the bounce house and fell on the driveway. You will notice the lovely purple goosegg on her head in the picture. While it doesn't make for the most beautiful of pictures, I am sure we will look back and laugh about it in twenty years.) It was party central, and we truly enjoyed watching the girls have such a good time.
I have said it before and I will say it again, but Layton and I feel truly blessed to have these three girls. Celebrating each of their birthdays is such a reminder that we have been blessed with another year of watching them grow and change. Maybe as time goes out from Macy's surgery (and if we are blessed without any health scares), I may think less and less about the gift of good health. Often now, I find that it is one of my most frequent prayers for my family- good health. But, for now we are so thankful that have them all in good health and happy.
Next week, Macy will be seeing a new developmental pediatrician. The doctor will assess Macy and rank her skill levels against her peer group (such as cognitive skills, large motor and fine motor skills, speech, etc.) We are anticipating to be there almost the entire day. I am sad that Macy will miss her Thanksgiving feast at school. However, these appointments are hard to come by. We made this appointment back in the spring. When I called the other day to try and change this one so she could attend the feast, the next available new patient appointment was September 2008! So, we have decided to keep this one.
Then, Macy will be evaluated at the end of the month by a private speech clinic so that she can take private speech in addition to the speech classes she takes through the school district.
Last but not least, Macy will be getting her allergies tested in December. We are trying a new allergy medication, and we want to regulate her so that it doesn't affect her articulation in her speech. I will update you after those appointments. Have a great November!

Friday, October 19, 2007 1:54 PM CDT

We are so glad that this morning is over. Bright and early, Mimi came over to keep Emerson. Layton, Macy, and I headed towards downtown to the hospital. While we waited in the waiting room, I was trying to color a picture with Macy. Inside, my stomach was in knots thinking about what was to come. Layton and I were both anxious and just ready to get the appointment over with.
When we got to the back room, Macy came unglued when it was time for the EKG. This always seems to upset her. They put little stickers on her and hook each sticker up to a big machine with wires. It looks very intimidating, but she doesn't actually feel a thing. Almost instantly, the machine can pick up the currents in her heart and make a reading on it.
In spite of it not being a painful procedure, Macy can't ever stand the sight of the machine.
We were really trying to calm her so she could have the echo. Yesterday, I had written on here that Macy would not be able to have a sedative for the echo because of her congestion. So, if she wasn't a willing participant, the echo would have to wait until she was well again.
We brought along a present to hopefully encourage her to be brave. However, we let her open it early to calm her down after the EKG. The new doll seemed to distract her from the task at hand.
The cardiologist came in and said that her heart sounded good and her pulses felt good. She was ready to let us go and come back next summer (I guess she felt good enough about Macy and thought she was likely to scream during the echo like she did with the EKG.) But for our own peace of mind, we asked for an echo. Macy said she would be brave and do it.
We played dolls while the technician did the echo. Macy did a great job. The cardiologist said that Macy looked great. The scar tissue from last summer had not returned, and her coarctation repair from birth still looked good, also. The doctor said that because Macy is little, she could have murmurs when she is sick. Although we have never had that happen before, it feels better to be prepared with the information if it happens in the future. To say the least, we were so thankful for the good news!
On the way home, Layton and I were talking about how easy it is to quickly go back to thinking about everyday things and immediately forget how much our life could have quickly changed if the doctor had found something in Macy's heart. Before the appointment, we were asking God over and over to give her a healthy heart. In that same train of thought, we should say thanks to God that many times after the appointment. In a Beth Moore study, we learned that sometimes God can deliver us "from a fire." Today, we consider ourselves delivered "from a fire." We are thankful to God for this good news. Thank you once again for each prayer you have offered up for our family!

Thursday, October 18, 2007 9:04 PM CDT

Thank you for so many encouraging words about Macy's appointment tomorrow. Layton and I have felt better tonight with Macy than we had earlier in the day.
Macy and I went to the Pumpkin Patch with her preschool this morning. She was acting so clingy and seemed lethargic. I am sure that it all has to do with her having congestion and being a little under the weather (or maybe she is feeling my anxiety!), but I was feeling worried watching her act that way.
I can be an anxious person- especially with Macy's health. I told Layton that I honestly don't feel anxious with Macy on a daily basis. Neither Layton or I try to limit her in activities or put her in "any sort of a bubble" because of her history. We want her to live life to the fullest just as we do with all of our girls. But, those feelings of anxiety with her health must be right under the surface becuase they can rise so quickly inside of me with any turn of events like this. I really thought my anxiety might eat my alive today. I was praying that God would help me truly hand over my anxiety to Him and to put this situation in His hands. It is interesting how each one of us deals with something, and anxiety can tend to be a struggle for me.
Anyhow, God must have heard your prayers for Macy and for us. Tonight, she seemed more perked up and that of course makes Layton and I feel so much better.
I did talk with the cardiology nurse today. Because of Macy's congestion, the doctor will not give her any sedation (if necessary) to keep her calm during the echo. So, if Macy doesn't cooperate, we will have to wait until the congestion is gone, and then we will need to come back. Ugh! So, I am praying that God will take any fear out of this situation for Macy, and the doctor can successfully do the echo on her heart.
Again, I will update you tomorrow afternoon when we get home from Macy's appointment. We are still praying for a COMPLETELY HEALTHY HEART WITH NO MURMURS!
Have a great night!

Wednesday, October 17, 2007 9:46 PM CDT

Prayer Request:
Hi Everyone. Sorry to be quick, but Wednesday nights seem to be the busiest in our house. Anyhow, I have a prayer request for Macy, and I knew that so many of you would be in prayer for this appointment.
Macy has been having a cough and cold symptoms. We thought she looked a little yucky last night, so I took her in this morning. The pediatrician heard a heart murmur. Even though it was slight, Macy hasn't had a murmur at all since her surgery last summer. We immediately felt anxious about that news. The doctor labeled it a small murmur (rated 1 to 2 out of 4 being the worst.) She said that children can often have an "innocent" murmur while they are sick. Since their bodies are working so hard to get better, the other organs may not work as well. The doctor felt like that is what Macy probably has. However, we have not seen the cardiologist since she gave us our official "good to go...see you in a year" report last December. We were scheduled to go in for her yearly checkup with the cardiologist in two weeks. However, the doctor has an opening on Friday. With the concern about the new murmur, we decided to take the Friday appointment to see if the murmur is because of her being sick or if something else is going on in her heart.
I will keep you posted what we find out. Will you please pray that the murmur will in fact be an "innocent" murmur that goes along with sickness. Better yet, will you pray the murmur will not even be there at all. We are concerned about this. Layton is always the "glass is half full" person around here. I, on the other hand, can tend to be more pessimistic (or "realistic" as I like to think of it!) I realize that it could very easily be something minor or nothing at all. But, if I was told that a "normal" child had a heart murmur while they were sick, I would be concerned. So, the fact that our daughter has already had two heart surgeries only complicates the emotions in this situation.
Our appointment is at 10:30am. I will let you know after we are done.

RECAP OF THE DETAILS:
Macy's cardiology appt.- Friday, October 19th
10:30am
***praying for no heart murmur and a completely healthy heart
God bless you. I will update you after our appt. on Friday.

Saturday, October 13, 2007 8:37 PM CDT

October kicks off birthday season around here. I turned the big 3-0 last week! Yesterday, Emerson had her first birthday. She is becoming less of a baby and more of a toddler right before our eyes. She is everywhere- crawling and walking along the wall. She has started making her way quickly up the stairs if we don't catch her first. At this point, she won't take more than about two steps by herself, but she will walk along if you walk and hold her hand.
Today we had a family birthday party and celebrated out in the backyard with lunch and cupcakes. The kids played on the swingset and played games in the backyard. It was lots of fun!
Now that Emerson's birthday is over, it is time to think about the other girls birthdays. Ansley will be 6 and Macy will be 4- both birthdays are the first week of November. They are both inviting just a few girlfriends over from their schools for their birthdays. After that, the Dale household will be done with birthday parties until next summer! Whoo hoo!
With Macy's birthday around the corner, it is time for some of her big doctor's appointments. We will be seeing the cardiologist on November 2nd. I am feeling a little anxious about that one. It is the first time we have seen the heart doctor since last December. Judging from Macy's demeanor, all things look well. But, I still feel anxious about having the echo done. It would be nice to hear, "Macy's heart looks great. See you in a year!"
We will also be seeing a devepmental pedicatrician in November. We made the appointment with her in the spring, and November was her first opening! We saw a different dev. pediatrician when Macy was born. That doctor has since moved, and we are switching to a new one. With Macy's speech/articulation concerns, we want her to be assessed with a developmental pediatrician. This kind of doctor will evaluate her and place her skills on levels above/average/below her peers. We are hoping she will also be a good resource on how to approuach Macy's speech.
Currently, Macy is taking speech therapy through the elementary school twice a week. Layton and I feel that she could also benefit from private therapy, and we are in the paperwork stages of getting that started. I will keep you updated as we approach those appointments.
Have a great October!

Tuesday, September 18, 2007 5:27 PM CDT

Fall is in full swing. Macy started preschool, and she is an "old pro" already. Macy loves her teacher and has her sweet friend, Sarah, in her class. I am teaching her on Thursdays this year for P.E. It is really fun to have her in class and to watch her play with the other kids. She is a social butterfly!
In spite of having her adenoids removed, Macy keeps a runny nose almost everyday-ugh! I called the ENT and asked if it was normal to have been on two antibiotics and still have a runny nose after surgery. The nurse said she could have allergies. We have her on Claritin each day, but I imagine some allergy testing is in her near future!
Emerson is everywhere- crawling, standing, and walking along furniture. We can hardly believe she will be a year old in a couple of weeks! She has been having "playdates" with her cousin Jillian on Thursdays while we are at preschool. Emerson really is having so much fun with Jillian. Brittney says the girls play well together, and it is all on "their" schedule- something that is foreign to Emerson with two older sisters!
Ansley is enjoying kindergarten. She has figured out how everything works around there, and she has made a lot of little friends. She has a field trip next month, and she is already ecstatic about it!
On Monday and Wednesdays, Macy has speech at Ansley's school. She is in class with another little girl her age. Macy thinks it is neat to be up at Ansley's school, and I think she considers speech class to be an extracurricular like "gymnastics." As long as she loves it and it helps her speech, we will keep going.
Have a great week!

Wednesday, August 29, 2007 1:27 PM CDT

We officially have a kindergartener. Life has been very busy this week getting Ansley settled into her first year of school. Last week, my mom kept Macy and Emerson so Ansley and I could have one last hurrah together. We went and picked out her new backpack, a new alarm clock for her room, and got ice cream. We had such a great time, and I really fought back tears as we had ice cream and I let myself think about the past 5 1/2 years with her. We have gotten spoiled around here with goodies leading up to the big day: Mimi took her on a little shopping playdate on Sunday for some school things, Aunt B brought over some pink cupcakes, and our friend Tika brought over a pencil shaped cake to celebrate Ansley's big day.
On Monday, Layton and I took Ansley up to school. She really did well and didn't get upset when we left. All in all, we held it together pretty well, too. Ansley has seemed to enjoy the past couple of days at school. She has a little boy down the street in her class and two friends from Indian Princess in her class. She is settling in to school, and I am hoping we will settle into the schedule quickly.
It is funny how I thought the first morning of school would be such a big transition. But, it has really been little times since then that I feel the transition even more. As we go places in the day, it is weird to see her empty seat in the back of the car. But at the same time, it is nice having less kids getting in and out of the car at each stop. Macy is talking up a storm and has already assumed position of the new "in charge" girl.
When we take Ansley to school in the morning, we are supposed to drop her off at the front door of school in the morning and then wait out in the enomorous line of cars to pick them up in the afternoon. If all seems a little chaotic still, but that is probably just because it is the first week of school. As a kindergarten parent, I feel like I stand out like a tourist. Layton and I had our video camera on the first day, we don't know where to take the lunch money check, and I am wanting to be a fly on the wall to see how her day is going. Ha ha! By the time Emerson goes to school, I imagine I will just let her jump out of the running car with lunch money taped onto her shirt the first day of school!
Please be in prayer for the Strawn family. Luke fell off his deer stand while hunting, and he is in the hospital with 5 broken ribs and some fluid on his lung.
May God bless each of you and your kids with a great first week of school and preschool.

Monday, August 20, 2007 9:33 PM CDT

It has been a busy two weeks around the Dale household. Last week, we loaded up the van and drove to Destin, Florida for a week. We went to the beach with my parents, sisters, brother-in-law, and niece. (Are they trying to tell us something by flying instead of joining in our caravan to Florida?)
We had such a great time being at the beach and spending time with my family. It was Emerson and our niece, Jillian's first time to see the sand and the ocean. All of the girls did really well out at the beach. Mimi had the touch to get Emerson to fall asleep each day while sitting out at the beach. Ansley and Macy built sancastles and looked for shells. Macy was really unsure about the ocean, but she warmed up to it about halfway through the trip. Ansley loved being out in the ocean with everyone. We ate seafood, did some shopping, and played lots of games after the girls all went to bed.
About two days into our trip, I realized that I had not packed an extra vial of Macy's growth hormone. She is supposed to have the shot six days a week. But, the current vial I had packed only had enough for a little over one shot. So, we ended up having to skip seven days of shots (instead of having the medication overnighted to our condo and then kept on ice for our trip home.) Needless, to say I will have to be more careful about that on our next trip.
On our drive home, we stopped for the night in Lousiana and stayed the night with my grandparents. We ate with them and played dominoes while the older two girls tirelessly rode my grandparents exercise bike and rearranged the pictures all over the house. We had a lot of fun visiting with them.
We made it home Saturday night just in time to have a "High School Musical 2" watch party with a family from church who's kids love the movie as much as our girls do. (Okay, let's be honest- the moms love it just as much as the kids!)
Today, was Macy's big surgery day. Our dear family friend, Sue Jordan, came to watch Ansley and Emerson. We left for the hospital at 5:30am and met my parents in the waiting room. We were all really proud of Macy. She didn't seem too panicky as we got to the hospital. All in all Macy was very brave, but she wasn't too sure about laying in the bed and putting on the gown. However, a little "goofy juice" from the nurse made Macy nice and loopy.
She had another set of ear tubes put in and had her adenoids removed. After her surgery, the nurse gave her some morphine for her pain and also gave her pretty strong pain medication at the same time. During Macy's heart surgery last summer, she really responded poorly to morphine. Layton and I do not like her to have it becuase of that, but we didn't know she had gotten it today until it was too late. (In my opinion, it is always a good idea for parents to be in charge of the pain medication at the hospital. While I have a lot of respect for the staff, never assume that a nurse knows what your child can handle better than you do. Okay, enough on my soapbox!)
Anyhow, the two medications together, along with an empty stomach on a tiny girl, was too much for Macy. She was sick on and off until the early afternoon. We were able to bring her home around noon. She wanted to come straight in and lay down. It was a moment to melt my heart. Ansley came in, got in bed with her, and put her arm around Macy. These kind of moments are little jewels to keep framed in my memory (espeically when they are fighting or whining in a couple of days and I need to think of "happy thoughts.")
After a nap, Macy seemed so much better. The medication must have gotten out of her system, and she was able to eat and drink and keep it down. Tonight, she seems to be doing well. We are praying for a calm, easy recovery!
For the next week, she will be on a combination of Motrin, an antibiotic, and an ear drop. Then, we will see the doctor again in six weeks.
Once again, it was a blessing from God to get this surgery under our belt. Walking her through those halls and waiting for pre-op in the same room as last summer, it was hard not to think back to that day of heart surgery. We just completely thanked God that we were there today just for day surgery. What a blessing it is to be this summer instead of last.
The other night, Macy was looking at pictures of her heart surgery in her baby book. She said, "I don't want to do that again." I told her that I didn't want her to do it again either. We will just keeping praying...

Monday, August 6, 2007 2:13 PM CDT

Last Thursday, Macy had two appointments at Medical City. We saw her endocrinologist (growth) and her nephrologist (kidney) after that.
At the endocrinologist, Macy's weight was exactly what it was three months ago- 26 pounds. She had grown .7 of an inch up to to 35.1 inches in the last 3 months. The doctor would really like to see a bigger jump in Macy's height and weight. Layton and I really think her weight was a little deceiving. Since her double ear infection started about 2 weeks ago, Macy hasn't been eating quite like her usual self. So, that weight seemed a little lower than normal to us. Macy's bloodwork showed normal levels of growth hormone and thyroid. We will go back in three months for another check of her weight and height.
The kidney doctor said Macy's labwork still looked normal for her- low bicarbonate levels (acid levels in her blood) and everything else looked normal. We will continue her on her medication 3x a day. The nephrologist told me that her medication is essentially baking soda. I asked why I couldn't just use baking soda since it is already crushed up (as opposed to the pills we crush up for her throughout the day). He said it is very hard to measure accurately in the "already crushed" form. We will have a kidney sonogram to check for calcifications in a couple of months and more bloodwork before we see the doctor again in six months.
Today was Macy's first dentist appointment. We knew she would be anxious about it even though she has gone twice before on Ansley's visits. We even played dentist at home this morning in preparation for the big visit.
One hour before the visit, Macy had to take a large dose of antibiotic. This is apparently standard for anyone with a heart problem. The antibiotic is supposed to protect her heart from any potential bacteria she might get while be worked on in her mouth.
Macy was all pumped for the visit. Ansley was right alongside her getting Macy all excited for the visit. (Lucky for us - as you are about to read - Emerson stayed with her Daddy while we were at the dentist.) When we entered the examination area and there was some kid laid out in the chair with a huge light in his face and a "drill sound" connected to the silver untensil in his mouth, Macy was panicky! The hygenist was great to take it slow. She just let me hold Macy while we looked around at all the toothpastes and felt the toothbrush "tickle" Macy's finger. Then, Macy held it up to her own mouth. Slowly but surely, her and I worked our way into the dental chair, and in spite of her constant uneasiness, Macy got her teeth brushed by the hygenist. Macy refused the floss, we didn't even attempt the x-rays, but she did get some flouride. All in all, a successful first visit for Macy in my opinion. We were pretty proud of her!
New ear tubes and an adenoid removal are still scheduled for August 20th. We have pre-op early- it will be on Thursday of this week.
Three weeks from today is the first day of kindergarten. It is easy to joke and say how ready we are for Ansley to go to kindergarten (and I have felt that way many times- don't get me wrong!), and then there are so many other moments where in my own mind I can't even believe it is time for her to go. She is growing so quickly. I look at her and think, "Where is that little baby that initiated me into being a mom?"
Ansley has really wanted to get her ears pierced, and we decided it would be fun to let her do it as part of her big step into kindergarten. On Saturday, we took the girls to Libby Lu, and Ansley was all smiles on the way there. Much like Macy's dental appointment, Ansley started getting nervous when she got in the chair. After picking her earrings, Ansley was super anxious up until the moment of the piercing. After about 10 minutes of drama, Ansley recovered and was so proud of her new earrings. She told a friend of ours, "I feel like six years old now!"
In keeping with the tradition that my mom started with my sisters and me, I have wanted to take each daughter alone to pick out some school clothes. Since Ansley's school starts first, just her and I went to the mall after church on Sunday to buy her some things for school. She just seemed so grown up while we shopped together. I really had fun with her- talking and laughing and trying on clothes (Let me clarify that she was trying on clothes. If I had been trying on clothes, the order would have been "talking, trying on clothes, and then laughing"- at me!). I hope for many more moments like this!
Okay, enough getting sappy. All in all, we are so ready and excited for school and being in a routine again. Only three short weeks...

Wednesday, August 1, 2007 2:08 PM CDT

The girls and I went to the ENT doctor today for Macy's follow-up visit. And in an intersting twist of events, her tonsils are NOT coming out! It is odd...I was very wary of the idea of taking her tonsils out at the beginning of the summer, and I have spent all this time talking myself into why taking her tonsils out is the better move. After all of that, the doctor really feels there isn't a good medical reason to take Macy's tonsils out.
We reviewed the notes from her sleep study, and shocking to us as well as the doctor, she does not have any sleep apnea. Only one time in the night did she even a moment of "respiratory disturbance", which is apparently considered normal to do during sleep. Her disturbance level was ".2 events per hour." While I am not sure exactly what that means, the ENT said that she would need to have at least "2 per hour" to consider removing her tonsils (adults must have "10 per hour" to be considered apnea).
At our first visit with this ENT, he said that children should not have their tonsils removed just because they are big. The tonsils should come out if they are causing apnea or disturbances in school and behavior. Because of her normal sleep patterns, her doctor was very certain that she didn't need to have them removed right now.
However, Macy did have a double ear infection (we have had enough ear infections that we can diagnosis it every time before we even see the doctor- sad huh?) and he suggested to put in another set of tubes in her ears and remove her adenoids. The adenoid removal will likely help the runny nose and the snoring.
In some kids, the tonsils still eventually need to be removed even after all of this. However, her ENT's take on this was if that even became a concern at some point, she will be older (and hopefully more easy to reason with!), bigger, and not so easy to dehydrate.
All that being said, we feel really good about Macy not getting her tonsils out. We honestly feel like we have gathered all the information possible to make the best decision instead of hastily scheduling surgery. It would be so much harder if the doctor had said, "I don't recommend it, but it is still up to you." But the certainty of his explanation and his opinion as a doctor and father really put our minds at ease.
The adenoids and tubes are a much smaller process, less anesthesia, and much easier recovery- yeah!!!
Macy is still scheduled for surgery on Monday, August 20th. The ENT said that he doesn't expect her to stay overnight for this procedure. That sounds much better than staying up to a week!
There is not much else new. Macy has officially entered the "I want to be like my big sister" stage. Whereas Macy used to love monkeys, the color yellow, and running around in her birthday suit...she now loves princesses, the color pink, and being modest. These are all traits she has adapted from her big sister. The other day when we went out to eat, we asked Macy what she wanted to eat. She said, "I want what Annie is having."
Emerson is officially pulling up. She first learned it at 4am last week and decided to practice it until 5:30am. Ha ha! It was a nice, short run of setting her on the floor with a basket of toys. I had hoped she would enjoy the sitting a little longer!!!
That is about it around here. Have a blessed week!

Thursday, July 26, 2007 2:15 PM CDT

Macy had her sleep study last night. Yesterday, I started trying to gear her up for a "girls night." I told her that just the two of us would get to go stay together, we could take her favorite movie, and we could cuddle in bed and read books. We looked at the pediatric sleep clinic online and saw all of the decorated rooms. She was very excited. Ansley was wanting a sleep study just so she could get a turn in the "Enchanted Forest" room.
The whole family loaded up and went to settle us in around bedtime last night. After Layton, Ansley, and Em left, Macy got in her princess pajamas and was already begging to watch "High School Musical" - she is just crazy over this movie! I, on the other hand, was a little uneasy about spending the night in an office buiding with two male technicians that would watch our every move on a camera. However, the techs were both really great. One of them had a daughter who had heart surgery this past year with our same surgeon.
When the techs came in with about 45 wires to hook Macy up, she came unglued. Maybe she was having flashbacks to all the wires at her surgery last summer. She immediately put her arm out, pointed to the inside of her elbow, and cried, "shot!" I told her this wasn't bloodwork and reinterated this was not painful at all. But, she was very scared during the whole hook-up process. She had electrodes over both eyebrows, on the sides of both eyes, multiple in her hair, one on her neck, some on her chest, and some ran through her pajamas down to her thighs (all of these taped down to secure them). She had a pulse oximeter box (a little red light on her toe- just like the one during surgery) and two velcro belts on the top and the bottom of her torso. She even had a nasal strip that hooked into her nostrils to measure the amount of breaths she took through her nose. I was thinking, "She is supposed to sleep in all this stuff?" However, Macy forgot about it (mostly) once the techs left us and we watched the movie. She fell asleep around 10:15pm and slept about 5-6 hours. She woke up a little panicky and tangled. After a complicated bathroom break, the tech said he had all he needed from her, and we could leave early if we wanted. So, Macy and I headed home about 4:45am this morning, and got some rest while Layton watched the other two girls. This was yet another new, interesting experience under my belt since God gave us Macy!
We will meet with the doctor in about a week to discuss the results. Macy is still scheduled for her tonsils to come out in about 3 1/2 weeks.
As for the other girls, Emerson is busy trying to be mobile! I was hoping to keep her stationary a little longer, but she is wanting to pull up, take steps while holding our hands, and trying to crawl. I am imagining life to get busy busy busy as she starts to get into everything.
Ansley is on the brink of kindergarten. Only a couple of weeks, and she will be in elementary school. Lately, she really seems to grown-up. (Maybe it is the teenage attitude or her fiercely independent streak!) Her friends are getting their ears pierced, losing teeth, and spending the night away. We really can't believe that not so long ago she was just like Emerson, and now she is entering a whole new world!
Last weekend, we took the girls to the zoo. Their Popaw and Mimi Allison met us there, and we all had a great time. In spite of the heat, the girls really enjoyed seeing the animals. Macy had her heart set on seeing an alligator (she was torn between fear and excitement!), but they were nowhere to be found. The crowd favorite was the elephants.
Other than that, we are just hanging out. The girls are busy with playdates, swimming, and trying to stay cool! Have a blessed week!

Monday, July 16, 2007 3:21 PM CDT

Things have been busy around here the past week. We saw Macy's new ENT. I was really pleased with him. He was great with Macy, had a conserative plan mapped out for her care, and was thorough in his explanations. Becuase of Macy's history, he really wants to have all "her ducks in a row" prior to surgery. The doctor suggested a sleep study so see how mild/severe her sleep apnea is because of the tonsils. Him and I both figured that her apnea would be in the mild/normal range. However, severe apnea can take a toll on your heart over a long period of time. So, he wants to rule that out before her surgery. If her apnea was severe, then we will see her cardiologist and do an echo on her heart before removing her tonsils (to make sure she is in good shape.) If she has no apnea, he suggested not taking the tonsils out at all. But, we really feel like she will fall somewhere in the middle with sleep apnea.
Once we have that information as well as speaking to the anesthesiologist, we will go in for pre-op and then have surgery sometime toward the end of August (based around our vacation and the doctor's family vacation.) It isn't ideal to have her surgery the week before Ansley starts Kindergarten... especially because the doctor said he will keep us in the hospital anywhere from one day to one week depending on Macy's level of bleeding and her ability to stay hydrated. But, Layton and I really do feel that taking her tonsils out is the best thing to do, and late August is the soonest we can do it. We have been telling her she will eat lots of ice cream and popsicles to distract her from the word "surgery." All this talk of dessert has Ansley wanting her tonsils out. In the past, I have heard Ansley saying she "wants to be in the hospital" because she had seen what a fuss is made over Macy during that time. We have tried to explain to Ansley what a blessing it is to have a healthy body and not need surgery.
Macy's bloodwork came back and her thyroid, growth hormone, and most all of her kidney functions continued to look normal. Hallelujah! Her bicarbonate level, the acidic level produced by her kidneys, was low as usual. This basically just means she will continue to stay on her kidney medicines. There really is no timeline for this- it could heal on it's own or she could live the rest of her life on the medication. In the back of my mind, I am always hoping God will allow her kidneys to function normally so she doesn't have the stress of taking a medication 3x a day for the rest of her life. But, the good news is the number has not gotten any worse!
It is official. Layton is a 30 year old man! He crossed over into the next decade this past weekend. I asked him how it felt to be married to a younger woman in her twenties (but, never fear, I am knocking on the door to 30 and will go through it in October). We had a big costume party on Saturday to celebrate his birthday. Since Layton was born in the seventies, we all dressed up in our seventies clothes and wigs. It was a lot of fun!
This week, the girls are going to Vacation Bible School, and I am teaching first grade there. Today was our first day, and it was really exciting. The girls seemed to enjoy all of the stories, puppets, and music. Emerson, a little momma's girl, surprised me by staying in the nursery for 3 hours- I got buzzed the last 30 minutes to pick her up.
I am sure your weeks are as busy as ours seem to be. May God bless you busy week!

Friday, July 6, 2007 1:46 PM CDT

It looks like Macy's tonsils are coming out! We took her in to the pediatrician this morning to see if her tonsils had responded to the allergy medication and nasal spray that she has been on for the past month. The pediatrician said that her tonsils measured a 3 1/2+ (with a four being the worst.) Macy's tonsils are touching her uvula. We had tried to avoid surgery for her sake (if it was a matter of allergies), but we now feel like the best move for Macy is to get her second set of ear tubes in and get her adenoids and tonsils removed. I am sure once all is said and done, we will feel great about it. However, I am hardly looking forward to the procedure and recovery. Becuase of Macy's history, we will take Macy to Medical City for her surgery instead of a pediatric surgery center. That way, her cardiac anesthesiologist (that worked with Macy on her last heart surgery) can do her anesthesia and we will have the hospital and her doctors available if necessary. I am not sure if she will need to stay overnight for observation. While the procedure itself is not necessarily a big deal, it is important to walk a fine line with Macy's anesthesia. She has had a history of abnormal electrolytes and low sodium levels. These can be watched much more carefully in the hospital for the first 24 hours.
Because of the need to use a specific anesthesiologist (per her cardiologist's and pediatrician's request), we will need to switch ear, nose, and throat doctos once again. Our current doctor is not able to use that specific doctor for medication. We will see the new ENT in two weeks. (Okay, I really don't want to have to type out the word "anesthesia" again!!!)
Today, Macy also had her bloodwork done. We could hardly believe it, but we haven't had it done since August last year! Macy has had her labs run so many times in her little life, and now we have had such a nice long stretch with no bloodwork. All in all, she was very brave. But, in truly Macy-style, the first vein blew out and the nurses had to start again on her other arm. However, she quickly recovered when the nurse reappeared with pink bubbles, princess stickers, and a pink shiny ring!
We will get the bloodwork back sometime early next week. We are praying for normal bloodwork- specifically her bicarbonate level (the level of acid in the blood.) In the past, I have mentioned this is what she takes a kidney medication for 3x a day. We will keep you posted on the bloodwork results.
In other news, we celebrated the fourth of July with my family and some close friends. And, finally, we got a mostly sunny day around here! It made for a nice parade, some swimming, and homemade ice cream.
Have a great weekend!

Wednesday, June 20, 2007 1:30 PM CDT

Summer is in full swing already. The girls are taking a ballet class at the recreation center. Their little outfits are so much fun - little leotards, pink skirts, and ballet slippers!
Ansley is finishing up her last day of swimming lessons today. We are amazed at all she has learned. She is swimming underwater from side to side of the pool, and she is diving off the diving board and swimming to the shallow end!
Layton's parents came in for a visit two weekends ago. The girls were so excited to have their grandparents visit. When we told them that their Memaw and Pepaw were coming, the girls were jumping around and Ansley said, "We are filled with joy!"
Last week, Ansley and Macy got to spend the night with Popaw and Mimi (my parents). There was swimming and cookie making involved, and the girls had a blast! My Dad even made them homemade pancakes on Saturday morning like he did for us when my sisters and I were little.
Also, last week our dear friends the Brocks added boy number three to their family! We are hoping that between our cheerleading squad and their football team that we might someday be in-laws!
Yesterday was our eight year wedding anniversary. My mom watched the girls while we went out on a date. What a busy eight years it has been! Our tally continues of three kids, three houses, three states, multiple jobs, multiple surgeries, and the list goes on. We have said it before, but we said again just yesterday that hopefully the next eights years will be just as great at these past eight years have been but a lot less busy!
Yesterday was also the one year anniversary of Macy going back into the hospital. That day last year, we took her in for a checkup following her heart surgery. We fully expected all to go well and for us to go out to dinner that night for our anniversary. However, things took a turn when an x-ray showed fluid surrounding her right lung. In a daze, we went home, packed again, settled Ansley in with my family, and went back to the hopsital. If was so weird to see Macy playing and having a great time while we checked her back in. It didn't make sense to see her so happy and "fine" while she was full of fluid. However, her cardiologist told us that if we didn't take care of the problem now, she would have quickly gone down hill. (This is similar to the fluid she accumulated after her heart surgery at birth that started the chain of events to her stroke at three weeks old.)
So, one year ago, Macy went back into the hospital. As you can imagine, she was on super high alert going back in there. When we walked her into the ICU again, she was panicking. In order to remove the fluid, she had to have another chest tube inserted. What made that so difficult was that she was wide awake and "feeling fine" when we had to leave her with the surgeons for sedation and the surgical procedure. That was so hard for us to leave her so upset. It goes against everything in a parent to walk away from your child while they are so scared, but the surgeon insisted it was better to not have the parents in the room. And, four days later Macy left the hospital again. After four weeks of follow-up x-rays, the fluid was gone. Macy was going and blowing, and the surgery was starting to become a distant memory (for her at least!)
We can't say enough how thankful to God we are to be on this side of the surgery. It is such a blessing to have our health and be at home.
Finally, we surprised Layton with a new grill for Father's Day. The girls and I went to buy the grill the week before. Our good friend, Luke Strawn, picked it up and dropped it at my sister's house (she lives on the street behind us.) Without planning too well, I was out of bed at 6:20am on Sunday in my running shoes to go to Brittney's house and pick up the grill for the big surprise. However, it wouldn't fit in either of our cars, so I had to wheel this enormous grill down her street, through the alley, and into our backyard. It was SO loud that is sounded like a jet plane. I was glad their was a big red bow on it so if a neighbor looked out the window they would assume it was a gift instead of me stealing someone's grill.
The girls had their handprints put onto a platter that said "Daddy's Grilling Girls" and that was Layton's clue to look outside for his gift. Somehow, the girls didn't give away the surprise ahead of time. Shopping with the older two girls isn't the best way to pull of a "surprise."
That is what we have been up to this June. And, to think that the first official day of summer is tomorrow. We still have a long way to go in the heat. Happy Summer!

Tuesday, June 5, 2007 7:13 AM CDT

Today is June 5th, 2007. Exactly one year ago, Macy had her second heart surgery. In ways, I can recall the dread and anxiety of that morning like it was yesterday. In other ways, Macy has truly grown and blossomed over this year and that surgery is a distant memory. Can I even begin to tell you how THANKFUL and BLESSED we are to be in June 5th, 2007 instead of June 5th, 2006? We really believe that the miracle and testimony to God of Macy�s life continues to unfold each year.
Isaiah 21:1,9
O LORD, you are my God;
I will exalt you and praise Your name,
for in perfect faithfulness
You have done marvelous things,
things planned long ago.
In that day they will say,
"Surely this is our God;
we trusted in Him, and He saved us.
This is the LORD, we trusted in Him;
let us rejoice and be glad in His salvation."
We have said it before, but Macy is truly a person who enjoys each day of life. As long as she isn�t sick, Macy is going at full-speed. My mom says that when the surgeon was repairing Macy�s heart last summer, he turned her �up a notch.� She has energy to spare, and she loves the little things and the big things in life. Macy is social, cuddly, and loves to laugh! Each of our girls offer such different and special gifts to this family, and we can�t imagine how boring our family would be without the mix of their personalities.
After Macy�s surgery, she weighed in at a tiny 18 pounds. She is now up to 26 pounds, and has grown over three inches in the past year. These days Macy is consumed with all things ballerina, being a big sister, and watching/singing/acting out the movie �High School Musical.� While I know this is only a glimpse into her life, I want to share with you what an amazing and fun kid God has allowed her to become.
Throughout the past four years, there have been countless answered prayers. At the same time, there have been many times that I have not understood God�s plan in this situation. With Macy, some things would seem so �obvious� to me on how God should answer it (to further his Glory), and yet that is just my tiny human mind trying to wrap my thoughts around the enormous, amazing power of God. I heard a song yesterday that said we are not skilled to understand God�s will. How true that is for me. I try to predict how God will deliver someone in a situation, but that is not my job. My job is to keep praying with faith and leave the rest up to Him.
On a lighter note, it has been the �rain capital� here in Texas. In between daily rain showers/storms, we have been outside playing in the backyard most every afternoon. Layton has been teaching Ansley to ride her bike without training wheels, and Emerson is sitting up, starting table foods, and jumping herself silly in the Johnny Jump-Up. In the midst of chaos with little girls everywhere in this house, we are thankful for the �normalness� to our days. God bless you!

Thursday, May 24, 2007 10:03 PM CDT

Last week, we had our second opinion with a new ENT. He noticed Macy's tonsils were really swollen and suggested they come out. Well, that is a way to throw a wrench in the plans. (Have I mentioned that I am a bad combination of over-analyzer and poor decision maker?) So, I was stewing over what to do. We haven't had a problem with Macy's tonsils ever. But, with the doctor already in there putting in tubes and possibly taking out adenoids, we debated if the tonsils should come out. I spent the better part of two days analyzing: researching the surgery, contacting the anesthesiologist/cardiologist/pediatrician to decide the best location for her surgery (given her history and special attention for a cardiac anesthesiologist), etc...
On Thursday night, we ran out to grab dinner. From the front of the van, Layton and I could hear Macy breathing fast and heavy. It worried both of us. When we tried to talk to her, she started to kind of moan and wouldn't talk to us. We pulled the car over, got her out of the carseat, and she felt really warm.
Honestly, we don't often let ourselves feel anxious about her heart. We know kids get sick, kids get tired, and so on. However, Layton and I felt really funny about the breathing, and I knew it would be impossible to take her home to bed and not be worried about the (small) possibility of the breathing being a problem with her heart. So, we headed straight to the emergency room to check her out. My parents met us up there almost immediately. While we waited in the waiting room, Layton ran the other two girls home and our sweet friend, Tika, watched Ansley and Emerson at home so Layton could get back up to the hospital.
All in all, Macy was a surprisingly good patient. She only threw up once-from fear!- when the nurse took her blood pressure and heart rate. However, she calmed down quickly and a little Motrin did her some good.
The doctor listened to her heart and said it sounded normal. Priase God! As it turned out, Macy had bumps all in the back of her mouth. That along with the swollen tonsils, ear infection, and fever meant one thing...virus. So, we brought her home and kept her on Motrin, Tylenol, and antiobiotics for a couple of days. The first couple of nights, Macy's snoring could be heard on the other side of the house. But, after a couple of days, things started to clear up.
We took her into the pediatrician this week, and her tonsils are looking smaller. So, before we take them out and put her through another surgery, we are going to give her a couple of weeks (once the ear is better from antibiotics), treat her for allergies, and then decide if the tonsils should come out when the tubes go in.
This week, Macy is back up to full speed. The girls have been playing in the backyard, we have had friends over, and we went to the library.
Hopefully, Memorial Day will be fun and uneventful!

Saturday, May 12, 2007 4:28 PM CDT

Today Emerson is seven months old. Time is flying by! Why does each baby seem to go by faster and faster? I went to a graduation party for a dear friend of our family today. I realized that the graduate was in first grade when I was graduating...I feel old!
We are heading into our last week of preschool. The girls love school so they will be sad to not have it over the summer. But, I am looking forward to not packing lunches and not having everyone dressed and ready and out the door most days of the week by 8:30am. Soon, our life will be filled with swimming lessons, library time, and playing in the backyard...until it gets too hot, at least!
These days, Macy is completely terrified by all thing furry. She comes completely unglued around people's pets, school mascots, etc. We played at a friend's house on Friday, and Macy pee-peed in her pants because she was so scared of their (little) dog even though he was outside in the backyard. You can see from the picture I posted just how hysterical she was seeing the Easter Bunny. And, she about had a fit last night when the mascot at the Roughriders game went out on the field. Whenever she gets like this, there is no reasoning with her. Hopefully, she will grow out of this fear sooner than later. It doesn't seem to fit the rest of her daring, fearless personality- but it is a very real fear for her.
Macy had a "girl's day" with Mimi (my Mom) last week. Both of my older girls love to have a day alone with Mimi. Macy and Mimi fed the ducks (with Macy scared of the ducks, of course!), ate chicken nuggets, bought new books at the bookstore, and played dress-up. Macy had such a great time that she even slept with her new bag of books that night. Ansley is counting the days until she gets her "girl's day" again.
We had Muffins with Mommy at school this week for Mother's Day. I had one morning with Ansley and another morning with Macy. They both had made me sweet little keepsakes. Ansley had answered a bunch of questions about me like my hair color (she was leniant and said- "yellow!"), my favorite show (Days of our Lives- which is not true and was SO embarrassing when all the other mothers read it!!!!!), and weight (she said 97 pounds which is completely innacurate but I forgave her for the "Days of our Lives" comment.) She even wrote a song for me. I had such a great time seeing the girls proud of their creations!
Macy saw the ENT last week. It looks like it is time for her to have tubes put in her ears again (becuase of her constant ear infections) and also have her adenoids out. We are going to get another opinion this week, and then we will likely schedule surgery. We are also adding a developmental pediatrician back onto the list of doctors. This pediatrician will observe her and assess her abilities across the board. We are mainly seeing this dr. because her articulation when she speaks is lacking. However, it will be interesting to watch over time how Macy's abilities rank with her age. This doctor takes a while to get into. I received the info. packet this week to fill out and return before we can even make the appointment (that will be no sooner than September!) The packet is 13 pages and includes questions like, "Does your child sleep with a nightlight>" "Is your child social?" "Which hand does your child write with?" Then it includes tons of family history (even all major illnesses in our extended family) inclduing all medications I took in pregnancy, when Macy rolled, sat up, babbled, etc. It should take quite a while to fill out- especially on those tiny lines that doctors leave for you to fill in an essay amount of information. I have filled packets out like this before for other specialists, and I am wishing I could just have the previous ones faxed over to save the time of filling it out once again!
On a more serious note, we want to ask you to pray for a five-month old boy, Ethan Powell.
www.ethanpowell.com
He has lukemia, and yet his parents exhibit faith that is completely from the Lord. His parents are praying fervently and are asking others to do the same. INnorder to find a bone marrow match, Ethan's parents are asking people to look on Ethan's website for local bone marrow drives to be tested. The testing (to see if you are a match) is easy and quick. Please be praying for this amazing family!
God bless you this week and have a Happy Mother's Day!

Friday, April 27, 2007 4:33 PM CDT

Today is the first day for us to see "the light." This may be a bit of an exaggeration, but...
Ansley came down with some sort of a fever virus on Monday night. She stayed home with me while Macy went to school on Tuesday. When we went to pick Macy up, Ansley was shirvering and looked miserable. I called the pediatrician's office from the school parking lot, and we went straight there. Since I hadn't planned to go to the doctor's office, I had no snacks, no bottle, no drinks, etc. So, I had pathetic-looking Ansley wrapped in Emerson's blanket in the waiting room, Macy needing to pee-pee and wanting her beloved sippy cup, and Emerson who was extremely ready for a nap and/or a bottle. What a sight!
We got back in our little room, and the nurse said it might be a while. Since Ansley and Emerson were both needing to be held and Macy was sitting on the floor (cringe!) and touching everything germy, I called for backup. Layton was so great to drop everything and come help out. Ansley tested negative for the flu and strep. The bloodwork and urine sample were less than fun. Her temp was 103.7- yikes! We left with a plan for Motrin and Tylenol (and waiting to see what the blood and urine would show). Her temp. went up to 104.4 that night. The overnight nurse (on the phone) had us bathe her in a lukewarm bath until it lowered and she started acting normal again. The next day, Motrin (our friend!) must have really helped the situation because she seemed to be good that morning. One of my sweet friends from college, Mandy, had recommended us to a friend to do some photo shoots for Strausburg Children. (We love their clothes!) I hated to call the night before and cancel since this had been scheduled for a while and the director had flown in from Kansas City to do the shoot. However, we were really playing it by ear to see how Ansley would feel in the morning.
Since Ansley seemed better that morning and was so excited for a little "hair and makeup," we went for pictures. (By the way, pictures were fun and all three girls got to get their pictures made for the catalog in cute Strausburg clothes!) However, that night things heated up again with Ansley. The pattern was: without Motrin- pathetic, with Motrin- close to her normal self. The peak day was yesterday. Ansley's temp hit 104.7 about the time we were supposed to leave to pick up Macy from school. My sister, Brittney, (thank you B!) went to pick up Macy, and we did the cool bath/Motrin routine. Because of everything, Ansley missed her program/preschool graduation ceremony last night. She was sad to miss it especially since Macy was going to be in the program. But, Ansley perked up when she go to go stay with Mimi at her house. Thank you, Mom!
Overnight, Ansley's fever seemed to break, and she seems better today- only one dose of Motrin. We are guessing it was a virus since nothing else has turned up at the doctor's office to show otherwise.
So, we finally got to get out of the house a little and experience the fabulous spring weather. And, I am thanking God to not be fighting high fevers today. Getting that high really had me worried with Ansley. We are praying for a nice, calm weekend!
Other news: We took the girls to see the Plano Children's Theater rendition of "High School Musical." Ansley and Macy (espeically Macy) love this movie. We listen to the songs in the car and we watch it at home. The girls were so excited to go see the play. Emerson stayed with her cousin Jillian, and Layton and I took the older girls to dinner and the play. It was a lot of fun!
On the Macy medical front: Macy saw her endocrinologist a week ago. She had grown almost an inch and half and gained three pounds since December. The doctor felt great about her growth.
This coming week, Macy will be having a hearing test at her ENT doctor. Becuase of her constant ear infections and her poor articulation in her speech, we are going to check her hearing. If there is a temporary hearing loss, Macy will probably get tubes again and possibly get her adenoids out.
With the weather so great, I imagine we will be outside this weekend. Layton built the girls a new sandbodox-I had no idea he was so handy when I married him! Ansley and Macy are so excited about the sandbox, and we are excited just to be outdoors after this week. Happy Spring!

Saturday, April 14, 2007 10:46 AM CDT

We are a busy household this weekend. Our 9-month old niece, Jillian, is staying with us. There are a lot of girls in this house. I asked Layton if he feels outnumbered this weekend, and he said he feels outnumbered everyday! So, we are staying busy - especially coordinating the schedules of the two babies!
Other things going on around here:
We enrolled Ansley for Kingergarten this fall. Kindergarten?!?! We can hardly believe how fast life is going. September will be here before we know it. But, Ansley is so excited to go to elementary school. She has a million questions: She wants to know who will be in her class, how many times they will go to the library, etc. etc.
Macy is officially potty-trained. After about 50 tries in the past 6 months, this time has actually been really smooth. I guess she was just ready. But, she really hasn't skipped a beat, and it definitely hasn't slowed her down.
Emerson turned 6 months old this past week. She is growing so quickly. With her being our last baby, Layton and I are sad to see her getting older right before our eyes. She is at such a nice age - she doesn't talk back (or talk at all for that matter) and she thinks we are great 100% of the time! That is more than I can say for the rest of our household.
Macy has a checkup this week at the endocrinologist (growth doctor). We haven't been since early November, and we are really curious to check on her growth. I feel good about her growth these days. When she is playing with her little girl friends, she really doesn't seem that far off from their growth. Of course, Macy is always the smallest, but that gap between them used to feel so huge. Now, she just seems slightly smaller, and she just looks more grown-up.
Also, I know the time is looming for her bloodwork, and I am dreading making the appointment. She has gotten great at going to the doctor, and we know it just takes one traumatic bloodwork visit to set her back for a while.
Other than that, we are hanging around here. Layton has been tirelessly rebuilding our fence, and the girls are always wanting to go outside and play while he works. This weekend, it is cold weather, so that has put a stop to the outdoor work. Enjoy your weekend!

Wednesday, April 4, 2007 4:19 PM CDT

Well, against all odds, I have a budding athlete on my hands. Macy is playing on a pony ball team (it is the game of T-ball with only one base.) Her little team is made up of her and lots of three-year old boys. For those of you following other journals, the team's coach is Luke, Shelby and Turner's dad.
Last night was the team's first practice. Macy's team had their practice with another neighbhorhood team (which thankfully had a little girl on it as well). It was really cute to watch the chaos and excitement of all the kids. Macy is seriously half the size of these boys, but she couldn't care less about that. She had a great time, and I can't even imagine how cute their first game will be this weekend.
Our weekend is filled with egg hunts, pony ball, and a birthday party. To go along with all of the fun...spring is here. It has rained a lot the past week and everything is in full bloom. I think God has made everything green and blooming and beautiful at such a perfect time...just in time for Easter and time to celebrate Jesus. I hope our family is able to talk about and remember why we are really celebrating Easter. Even though the girls are young, it is so important to us that they hear the story over and over that Jesus died for them and is alive again! To me, it is so easy to forget the amazingness of it since I have heard the story my whole life. I have often taken it for granted by not being mindful of why we truly celebrate Easter, but I want this story to be renewed in us! Happy Easter!

Thursday, March 22, 2007 8:11 PM CDT

This has been a month of nice changes in our house. Emerson has slowly adapted to the occasional bottle. After many weeks of persisting, Layton has finally taught Emerson to take a bottle. This has been so helpful for those times that we are out and a bottle is more convenient.
Emerson has also figured out how to sleep through the night. Praise God! - we are finally getting some sleep around here. Emerson goes to bed early. We usually go in and feed her around 10pm, and then she sleeps until the morning time. This is truly a blessing! Isn't there a saying like... "If mom is happy, the whole family is happy"? Well, that definitely holds true with sleep around here.
Macy has finally given up the passy at sleeping times. Can you believe we have let it go this long? She has never (even as a baby) been one to take a passy all the time. But, she has always liked it to fall asleep with her. Last year was a tough year to break her habit between her surgery and a baby sister. But, she has finally given it up (we didn't even take it on our last weekend trip!), and it has been gone about a month.
Our final change is that Macy is (again!) potty training. We have been on and off with this since right before Emerson was born. She was showing interest in the early fall. Once I got on board with her to try and potty train after Emerson was born, Macy had lost interest. We are again trying. She has been in big girl panties all week, and we had a big celebration today for doing such a great job on the potty. As always, we will take this one day at a time. Who knows how it will be going by next week!?!
Last weekend, Layton's sister got married in West Memphis, Arkansas. We spent the weekend up there with all of his family. It had been over a year since we were in town with his brother's family. Layton's brother and wife have three small children about the same age as our girls. Layton's sister has a four year old daughter. So, my inlaw's house was filled with seven kids ages five years old and under, Layton's two grandmothers, and six adults. It was a busy, busy weekend. Needless to say, the kids had a blast together and didn't stop running the whole time! We had a great time at Lori and Jason's wedding. I will post some pictures of our trip.
As for our health update, Macy's nose started running nonstop the week before the wedding. Knowing her the way we do, we took her into the pediatrician suspecting an ear infection. Sure enough, Macy had an ear infection again. Our pediatrician wants to see if Macy keeps having ear infections into the spring. If she does, we will likely get tubes in her ears again. This is fine with us since it means less appointments, less antibiotics, and less runny noses!
Also, Macy still has not seen the endocrinologist to check on her growth. The human resource manager at Latyon's company is helping us to come to an agreement with our insurance company on payment for Macy's doctor (she is out of network on our new insurance plan, but we would like to keep Macy under her care because of our history with her.) Hopefully, we will have some news this month and can schedule an appointment.
Also, it is time for Macy to go to the dentist. Ansley had long been to the dentist at this age, and we have a great pediatric dentist. The whole office is friendly and full of kid games, toys, prizes, etc. But, we have really felt like Macy will have a super difficult time understanding that the whole process "will not hurt." With the hygenist having a mask on, the silver tools to go in your mouth, etc... I have always pictured Macy freaking out in the situation. She has gone a couple of times and watched Ansley at the dentist. Ansley is a model patient at the dentist. She actually loves to go. In a couple of weeks in Ansley's checkup, and I think I will make an appointment for Macy as well.
We have a weekend full of projects in our yard and celebrating my Dad's birthday! Enjoy your weekend...hopefully you will have warm spring weather like we are having!

Thursday, February 22, 2007 8:26 PM CST

Well, no news is good news, right? That is one of our mottos around here. We haven't had an update in almost a month, but life goes on in the Dale house.
The Girls are all doing well. I signed Macy up for preschool for next fall, and it felt so weird not to sign Ansley up for preschool, too. She will be in Kindergarten, and we can hardly understand where the time has gone! She seems like such a grown up girl to us. Layton has taught her to read her Dick and Jane books, and our house is covered with her many art projects.
Macy loves playing the role of big sister. The "newness" of having Emerson around has NOT worn off with Macy. She is crazy for that baby! Besides Emerson, Macy is really into music and cooking shows! Rachel Ray is her favorite, and she even named one of her babies "Rachel Ray."
As for Macy's health, her ears haven't caused too much trouble since my last entry. She seemed to fight a runny nose all winter, but she has had only had 2 ear infections since the new year.
Emerson is 4 months old. She just had her checkup, and she is over 13 pounds! Emerson is not a fan of the bottle or for sleeping longs stretches in the night, but she is a pretty happy baby. In spite of the constant noise level around here, she really seems to enjoy her sisters. They sing, dance, and act silly right in front of her, and she seems to think they are pretty great!
Macy is due to see the endocrinologist next week for a check on her growth. However, we have switched insurance companies this year, and the task of converting doctors is taking longer than I had hoped. Her endocrinologist is not on our new plan. We would still like Macy to be under her care because we have a history with her, she is based out of our main hospital, and she works well with Macy's other physicians. So, we are working on appeals to possibly get her approved as an in-network physician. So, we will probably wait a couple of weeks to clear that up before she sees the doctor.
Layton and I are slowly getting the hang of managing the craziness around here. My learning curve on returning emails and phone calls is still lagging (as some of you may have noticed).
Spring is around the corner, and we are already enjoying being out in the warmer weather. I hope you are each getting some warm weather as well. God bless your family!

Friday, January 26, 2007 5:02 PM CST

We finally have some warmer weather here in Dallas again, and we are loving it! Preschool is back in full swing, and I have gone back to teaching at the girls' preschool on Thursdays. Emerson is staying home with Layton, and he is working out of the house on those days. I think they are doing some serious bonding on those days- Layton sends me cute pictures on my cell phone throughout the day to keep me updated. Emerson still is not thrilled with taking a bottle so she eats very little while I am gone. Better him than me (Layton is much more laid back than I am!)
Layton traveled with work for the first time since Emerson was born. I was anxious to be "home alone" day and night without his help. However, I had some help which was great. My sister and mom both came over and helped out a lot and one of my best friends from growing up, Shelley, also came over for a slumber party! During one of the days, Macy had a birthday party to go to. I loaded the crew up in the rain and we trekked into the mall. What a sight we were! Me, three girls, one stroller, one baby bjorn, one birthday present, diaper bag, party favors... do you get the picture? However, we survived and the girls had fun!
Today has not been one of Macy's better days. She told me her ear hurt this morning and even asked for medicine (this coming from a child who HATES ALL medicines ALL the time!) I gave her some Tylenol, and she was fine the rest of the morning. However, on the way home from a birthday party, she threw up in the car. When we got in the house she said her ear hurt again. When she woke up from her nap hysterical (another clue is that fact that she usually never naps anymore but she took a nap today) we took her to the pediciatrician. She had another raging ear infection. Our pedicatrician said her ear looked "hideous." This infection manifested differently than usual, and I didn't even see it coming. We keep her on Claritin to help with drainage and ear infections, but this one slipped in anyways! So, we are on another round of antibiotics and an ear drop along with the Claritin, laxative, kidney meds 3x a day and the daily growth shot. I guess I will need another spreadsheet to keep up! Honestly, keeping Macy's ezcema, diaper rash, ear infections, and constipation balanced is quite a job. A little too much medication can throw it one way, and forgetting medication for a couple of days can throw each situation the other way.
As for Macy's ears, we will watch them over the next 1-2 months. If the infections persist, we will likely end up getting tubes in her ears again. (Which I am completely fine with!) Also, I want to check with the ENT on getting Macy's adenoids out. She constantly fights draininge, and I have heard that having your adenoids out can help to stop that.
Other than that, life is good. If we could hang on to today's 60 degree weather, that would keep us all in a good mood.
Emerson is growing quickly, and we are having so much fun with her. Next month, we will register Ansley for kindergarten! I can't even believe that is on the horizon for us. Time is flying by!
May God bless each of you this week with good weather and good health!

Thursday, January 4, 2007 1:41 PM CST

I will be short today as I just got the kids down for rest time, and I am yet to have a meal today (or course, I need to skip a few meals these days! ha ha) Anyhow, we have had a really good couple of weeks. Ansley and Macy truly enjoyed Christmas, and we enjoyed watching them have such a good time. We spent Christmas Eve with my parents and family. There was a lot of eating and gift opening. On Christmas morning, we woke up to see what Santa had brought the girls. Then, we went over to my parents house for lunch. Each year, we have a fun tradition using "The Twelve Days of Christmas." My Mom labels twelve papers each with one number from 1-12. Then, she passes them out. We have to come up with a verse for the song "Twelve Days of Christmas" to goes with our number. Our verse usually pertains to something that has happened to us in the past year. Then, we go around and sing the song and "show off" our verse. It is so funny every year what eveyrone comes up with. I got the number 6 and it was only fitting that my verse was "six-ty nights with no sleep." There was even a sub-par drawing of my kids up at night to go along with the song. There were other great ones like 12 hour work days, eight days in Maui (I wish!), and Ansley's (it was her first year to participate) "two Christmas balloons."
The day after Christmas, we left for Memphis to spend a couple of days with Layton's family. It was great to be with his parents, sister and her family, and grandmothers. We haven't been to Memphis in a year because of Macy's surgery and then the birth of Emerson. Ansley and Macy had such a great time riding Barbie jeeps and playing with our niece, Cameron.
Macy seemed to come down with a pretty yucky cold on the trip. We had her in to the doctor when we got home, and she started an antibiotic for a a double ear infection. Macy seems to be good to go since she went in to the doctor last week.
Now, Emerson seems to have caught it. I took her in to the doctor and found out she has a double ear infection and a cold. So, she is also on an antibiotic. Between Macy and Emerson, we are giving eight medications daily (some with multiple doses.) I think I need a spreadsheet to keep up. As Emerson gets through this, hopefully we will be good to go. The older two girls are in full swing playing and ready for preschool to start again.
We are still holding out hope for some decent sleep (even a three hour stretch would be wonderful- sick kids and ear infectins means not a lot of sleep!). Hopefully, that will be soon to come.
I will have Layton load some new pictures tonight.
Happy New Year!

Sunday, December 24, 2006 2:57 AM CST

Is praying about sleep ridiculous? We are aware that there are much bigger requests such as forgiveness, health, and safety. But, somehow our three kids have some not so great sleep habits. Ansley wanders in once to twice every night with bad dreams. Each time, we send her back to bed. For Ansley, we have tried positive reinforcement such as a privilidge the next day (gets to watch a movie at rest time) if she stays in bed all night, but it hasn't been the cure.
When Macy wakes up at night, she is much less rational. She stands at her door banging and screaming. There really is no way to calm her down unless you get in bed with her (and we have always practiced the concept that each child sleeps in their own bed unless they are sick.) Going in to check on Macy really only makes her more hysterical once you leave the room again.
Both and Ansley and Macy do not take naps anymore. Otherwise, I would assume they are getting too much sleep in the day time. Each afternoon, they take a "rest time," but that is really just time alone in their rooms playing.
As for Emerson, she continues to get up and eat on a newborn schedule of every 2 1/2 to 3 hours each and every night. The two hours of sleep time between the end of one feed and the start of another feed is often filled with visits or cries from the other two girls. I looked at the other girls calendars from when they were babies, and their feedings had definitely started to stretch into longer sleeping habits at night by almost 3 months of age.
So, Layton and I are stumped (and weary!). I am really trying to pray for each girl to get enough sleep. We watched Ansley yawn through her entire preschool Christmas program the other day, and I know that waking up in the night is affecting them during the day as well.
If any of you have some advice that has worked for your children to sleep at night, we would love to hear it!
Sorry for the middle of the night post. I hope each of you are sleeping tight and all night long!
Merry Christmas Eve!

Saturday, December 16, 2006 3:52 PM CST

The girls are so excited to celebrate Christmas! Each day, they can hardly wait for their Dad to get home and open the Christmas countdown calendar to "Jesus birthday!" (I am sure the candy inside plays a big part in that excitement!) Crazy enough, our Texas weather has been in the seventies each day! It doesn't feel like Christmas outside!
Last weekend, our whole family went to a party at the hospital. Each Christmas, Macy's surgeon throws a Christmas party for all of the children and families that have been through heart surgery. Santa is there along with face painters, crafts, and Radio Disney. We went with Shelby's family (www.caringbridge.org/visit/shelbykate) and the girls had a great time. Macy's was very scared of Santa. However, she saw Ansley telling Santa what she wanted for Christmas and didn't want to be left out. So, Macy quickly ran up to Santa, shouted "Rella bike" (Cinderalla bike), and ran off. I guess she felt that got the point across to Santa of her big wish.
After Santa and some face painting, there was a hula hoop contest. I suggested it to both girls. Ansley was nervous to be in front of the big group, but Macy didn't need to be told twice. She ran out to the big open area and found herself a hula hoop. She started "loopty looing" (Macy's words for hula hooping) before the music even started! It was so funny to see her spinning in circles with the hula hoop!
Macy has had a week full of medicine. Since her doctor's visits last week, she has been on a laxative and an antibiotic in addition to Claritin (for her allergies) and her regular medicines. Every time she is on an antibiotic, she gets diaper rash. Not fun! Also, Macy is trying to potty train. She is using the potty some and begging for panties. But, potty-training a kid on a laxative isn't the easiest thing to balance. I guess we will take the training slow!
Yesterday was Macy's cardiology appointment. It was the first time we had seen the cardiologist since the end of July. As soon as we got the appointment started, Macy was really uneasy. For her EKG, she always has to take her clothes off. Then, the nurse puts these little glue-backed stickers on certain parts of her chest and arms. Each sticker gets clipped and wired to a big machine for her heart reading. Even though she couldn't feel anything (except the pullng off of the stickers) this process made her come unglued. She didn't recover afterwards either. So, the doctor gave her a nasal inhaler of Xanex to calm her. This elevated her hysterics until the medicine took affect and she calmed down. Macy's calm state allowed the sonographer to do an echo (sonogram) of Macy's heart. It was such a blessing to see everything look good in Macy's heart. There was a tiny shadow where the scar tissue was removed from her mitral valve this summer, but the cardiologist thought it was likely a stitch. The blood pressure flowing through from one side of the valve to the other was normal. This area has a grow back rate of 5% so we will continue to pray that there is never any growth there again. Also, the aortic arch that Macy had repaired at birth still looked nice and open for blood flow. The most exciting thing we heard was when the cardiologist told Macy that we didn't need to see her for a WHOLE YEAR! That was thrilling for us! It is a blessing from God when these appointments spread out in length!

Proverbs 15:30 "A cheerful look brings joy to the heart, and good news gives health to the bones."

We are looking forward to the girls Christmas program at school this coming week. I hope each of you are enjoying the spirit surrounding the birth of Jesus! Merry Christmas!

Friday, December 8, 2006 2:01 PM CST

It is hard to believe that 2006 is almost over! Another year that has simple flown by! The girls are excited for their preschool Christmas program in a couple of weeks, and we are staying busy with preparing for Christmas (Oh yeah, and busy with three kids! ha ha) Macy got to spend a day with her Mimi Allison last week. They went to storytime at the library, bought some Christmas ornaments for Macy's little pink tree, and played dress-up. Macy felt like such a big girl to have a day out on the town with Mimi!
In spite of the "busyness" at home, we are finally settling in to a schedule with Emerson. The older girls are really fun with her! Ansley is very "motherly" to the both of them - she loves to be in charge and tell everyone what to do. Ansley is very helpful holding Emerson and she loves to sing to her and entertain her. Macy is more physical with Em. She kisses her ALL the time until it drives Emerson crazy! Macy is baby doll crazy and has two of her own babies - Emmie and Lily. She takes them almost everywhere and copies everything we do (burping her babies, changing her babies, etc.) Basically, we have three mothers in the house for Emerson!
Every year at this time, Macy has her "big checkups" with her list of doctors. Yesterday, we had three appointments in one day. We saw the pediatrician first for some tummy troubles that Macy has been having. She put Macy on a prescription to hopefully get everything flowing in the right direction for Macy. An hour and a half later, Layton and I took her to the nephrologist for a kidney checkup. (We had her blood work done a week ago to be prepared for this appointment.) As we have mentioned before, Macy has something called Renal Tubular Acidosis. This means that her kidneys are not able to completely regulate the amount of acid in her blood (normal kidney function would keep a good ph balance in the blood.) While this isn't necessarily a reflection of the kidney function itself, it does long term affect bone density (calcium) and growth. Isn't that all Macy needs is another challenge to her long term growth? So, Macy takes kidney medication a couple of times a day to keep this regulated in her blood. Once we had gotten a better handle on this back in January of this year, Macy's growth really improved. Every month or two, we continue to check her bloodwork for normal or near-normal acid levels.
The medicine Macy takes is very bitter and yucky tasting. We have been "hiding" it in her drinks for a couple of years now. (On the day of my c-section with Emerson, the nurse gave me some of this medicine to regulate the acid in my stomach. Apparently taking this before a c-section is normal procedure and I had it with the other two babies, but I just didn't remember it. I have never really had it before, and I had to take the exact dose that Macy takes. Honestly, it was horrible!) Well, as Macy has gotten older she has figured us out, and has started refusing all drinks but water because she knew there was a funny taste in there. So a couple of weeks ago, the nephrologist suggested a pill form that we could crush up and add to drinks or snacks (that has less taste to it than the liquid). So, we have been doing that and things are going a little better. Once she figures out an item that we put it in, she starts to refuse it and we find a new food item to "hide" it in!
Long story, I know. Anyhow, we tested her blood since adding the new pill. Secretly, I was hoping it would shoot her numbers way up into the normal range, but she stayed about typical for her which is right under normal. Yesterday, the doctor decided since she has grown over the past year we need to up her dose a little to coorelate with her weight. So, we will be doing the pill three times a day. Reasoning with a three year old to take this pill three times a day isn't fun!
What was encouraing though was Macy's growth was finally (after three long years) patterning itself along the same curve as a "healthy" child's growth. Even though it is under the growth chart, it mimics the same curve which means that her growth is finally going at the right speed. Thanks God for the kidney medicine and growth hormones!
We left the nephrologist's office and headed down to the endocrinologist's office. There we learned in the past 4 months and one week that Macy has grown 1 1/2 inches and gained two pounds! That was the best growth we have seen out of her yet. It really confirmed how we had been feeling like she "looked" as though she was catching up to the kids around her. We will keep praying for continued growth and health!
Next Friday, we will see the cardiologist. Judging by Macy's actions and amazing development since her surgery in June, Layton and I don't expect bad news at that appointment. However, since it is her first followup since the summer, we will probably hold our breath during that appointment. We are just asking God for a clean bill of health around here. That would honestly be the best possible Christmas gift we could get!
Macy truly has grown into an amazing three-year old. Since this summer, her vocabuly has increased enormously, she looks older, and she acts her age. Even at the doctor yesterday, she stayed calm and didn't scream from start to finish like she did even six months ago. Also, she is using the potty some, and we just see her as such a big girl. Her and Ansley are two peas in a pod!
When I read this verse, the first part of it makes me think of Macy. "Life will be brighter than noonday, and darness will become like morning." Job 11:17 Macy really seems to be happy with the little things in life. She is always so happy and full of kisses and hugs for others. If it is bath time, she says, "I love the bath!" If it is snack time, she says, "I love snack time!" I only wish it was this easy to be content myself. As Macy grows up, my prayer is that God always gives her this spirit of joy!
God bless you and your family!

Friday, November 17, 2006 9:51 PM CST

I think we are finally on the mend! From what I hear, it sounds like the stomach virus is going around everywhere! It was a super crazy week after each of us passed the virus to someone else in our house. On Friday, I was even feeling yuck so my parents took Macy to dinner with them while Layton cared for the rest of us (Ansley and I were still feeling pretty bad.) At the restaurant, Macy threw up at the table. It seemed to take a while for her to shake it. Even into this week, I feel like the kids haven't been 100hemselves, but I would like to think that everyone is getting better!
Because of everyone getting sick, I didn't get to write in my last journal that the older girls had their birthdays. In retrospect it was good that we celebrated a couple of days early since they were sick on their actual birthdays. Ansley turned 5 years old on November 5th, and Macy turned 3 years old on November 6th. We had fun celebrating their birthdays. Of course, we feel so blessed to watch When Macy blows out her candles each year I really do reflect in my mind about what a gift life truly is. Just to think of all that has gone on in her three years, I feel so very thankful to see her smiling and blowing out three little candles.
Emerson turned five weeks old this past week. I can't help but compare the timing with the other two girls when they were babies. It was right after Macy turned five weeks old that she finally came home from the hospital for the first time. It is still almost surreal to think that all happened just three years ago!
This time of year can seem so busy with Christmas shopping, parties, etc. Even though life has truly been non-stop around here since Emerson arrived, I would really like to slow down and recognize all of the blessings in our life that we are thankful for this week as we celebrate Thanksgiving.
"Enter his gates with thanksgiving
and his courts with praise;
give thanks to him and praise his name.
For the LORD is good and his love endures forever;
his faithfulness continues through all generations."
Psalms 100: 4-5
Some friends in my Bunko group at church shared a tradition that I think is worth mentioning. The tradition involves keeping a family journal and writing down things that you are thankful for throughout the year - things that happen in your family, etc. Then, at Thanksgiving each year you can read over the past year with your family and see all the things each of you are thankful for. We started a journal like this the day that Emerson was born, and I really hope that we can make this a tradition in our house and write down throughout each year the blessings that God gives to our family.
Happy Thanksgiving!

Friday, November 10, 2006 3:31 AM CST

Well, I will be honst with you...we are feeling a little defeated this week (and a lot overwhelmed.) Do you ever feel like there is a black over you that you can't shake off? That is the consensus around here lately. Having three little kids has been busy enough adjusting the past couple weeks. Then, we threw in a set of stitches, and now we have had sickness around here since last Saturday. Last weekend, Layton wasn't feeling well and before we knew it, he and Macy were vomiting. It was a tough weekend having a sick parent, a sick child (who we always have to watch extra closely becuase she dehydrates easily), and have a newborn. Layton and I felt so exhausted as we tried to quarantine everyone from each other and continued to explain to the girls why they couldn't be together or touch Emerson. This carried on through Monday. On Tuesday, we were thinking we were on the mend. And then after preschool Ansley started a fever and Macy threw up again at the dinner table. Layton is always the "glass is half full person around here", but I truly felt like crying. (Of course, I am operating on little to no sleep- ha ha!) So, we kept everyone home again on Wednesday and tried to keep all the kids from each other as much as possible. And, I have been fighting anxiety this week over Emerson getting sick. She is so small still that this would be awful for her to endure. Then, Thursday (yesterday) both the girls were not themselves in the afternoon. Ansley especially was irritable. So, about 30 minutes ago I was awake and feeing Emerson. And, I hear chaos in the bathroom in another part of the house. And, why is it that mothers just know what is going on? I just had a bad feeling that Ansley was up and sick. Layton rushed in and found Ansley vomiting in the bathroom. So, know we are back to square one around here. Being the "feeder" for Emerson, I have really had to keep my distance as much as possible from everyone sick this week. As a mother, that has been so hard because I ususally would be right there with them. Layton has really been so good with the girls while they have been sick. (sleeping on the floor in their rooms, bathing them after they are sick, etc.) But, honestly we are tired and feeling a little picked on. It has truly been a draining week, and now I am worried about Emerson again. How can you really keep everyone apart 24 hours a day? We are washing hands and going through hand sanitizer like it is water around here.
If you would, please pray for God to restore everyone's health around here. I have been praying for relief since Tuesday! Sorry for the big downer entry, but I wanted to update you on the situation.
Good night!

Wednesday, November 1, 2006 5:19 PM CST

Life continues to stay busy. I have hardly checked my email and have obviously not gotten a second to update the website.
In spite of being a big sister now, Macy must have needed some more attention. Last Wenesday afternoon, the two older girls were playing Candyland on the computer. My sister, Brittney, her daughter, Jillian, Emerson, and I were in the baby's room. All of the sudden, we heard Macy screaming. I assumed there was fighting and headed into Layton's office. When I got there, Macy was on the floor and blood was literally everywhere. It was all over her face and coming out of her nose (as well as other unidentified locations on her head). We blotted it with a towel, and that is when we saw the big gash on Macy's forehead. Brittney stayed with all the kids, and Macy and I drove to the ER. Her Daddy, Mimi, and Popaw were not far behind us. Macy had to get three stitches in her forehead. She was less than thrilled to be in the ER, and the stitches experience was not fun etiher. However, a little bit of ice cream and lots of attention quickly got her over it! She is our little daredevil! We are wondering how many hospital bracelets we have already accumulated for this girl!
Other happenings have been our church carnival and trick-or-treating. The girls had a great time doing both of those. Ansley was a bride and Macy was a kitty cat.
Today, our whole family spent the morning at Medical City as Shelby Kate Strawn, Paige and Luke's daughter, had open heart surgery. It was so difficult to walk those steps again but with friends. In spite of such a tough day, Shelby did well, and is now recovering in the ICU. www.caringbridge.org/visit/shelbykate
Please be in prayer for her complete, uncomplicated recovery.
Tomorrow is the girls' 3 yr. and 5 yr. checkup. To complicate it, Macy also will have bloodwork and her stitches removed at the pediatrician. I can only imagine what a fun hour that will be!
God bless you!

Thursday, October 19, 2006 5:34 PM CDT

Emerson is one week old today! It has been a busy week trying to settle in, but hopefully we are on our way to getting into a routine.
Ansley and Macy seem to really enjoy having Emerson around. Both of the two older girls are really into holding Emerson and checking on her. Macy is going to "kill her with kindness"- she is literally all over the baby. We really can't leave Emerson down on the floor without finding Macy hovering over her, kissing, patting, etc. Ansley seems to have a longer attention span with the baby and loves to sit and hold her. I imagine that the "newness" will wear off within a week or so for Ansley and Macy and life will go on! Layton and I are in overdrive trying to keep the household running. My Mom has been helping around the clock to get us settled in.
We took Emerson for a one week checkup today at the pediatrician. We brought Macy along because I thought she might be harboring an ear infection. As we have mentioned before, Macy usually is hysterical from start to finish at the dr's office. I don't know if it was being a big sister and having her baby sister there or what, but Macy was amazing today at the dr's office. She didn't cry and she let our pediatrician check her all out. When Emerson cried during her exam, Macy told her "it's okay." We were so proud of what a big girl Macy was in the doctor's office. We will head back in two weeks for Macy and Ansley's yearly checkup. The following week, we have Macy's endocrinology and nephrology appointment. In the meantime, I will need to get bloodwork on Macy to check her labs before we see the kidney doctor.
We thank God daily for blessing us with a healthy baby. In spite of the chaos, we are trying to enjoy each moment and be thankful to be "normal" andnot in the hospital with a sick baby. Just having the girls all together, happy, and healthy is the best blessing we could ask for this week!

Thursday, October 12, 2006 4:50 PM CDT

Emerson Anne Dale was born this morning at 10:11am. She weighed 7lbs 8oz and was 20 inches long. She has a head of dark hair and what looks like blue eyes. Summer is recovering and doing great. She just held her and fed her for the first time around 2pm. Like a true Dale she latched right on and started eating. What a blessing from our last experience. We will update with pictures as soon as we get a chance.

Saturday, October 7, 2006 9:25 PM CDT

The countdown is on for baby #3! The big arrival date is Thursday, October 12th, and we are all excited for her to get her! It has been warmer here again this past week, and that really makes me ready! The girls are "playing babies" around the clock. The girls play so well together, and I am hoping they will continue to play this way once the baby arrives (and life gets more hectic with feedings, etc.) Ansley loves to talk about all the ways she can help with the baby, and Macy loves to kiss my big tummy when we talk about the baby! Layton and I look forward to seeing them both be big sisters to the new baby!
Macy is busier than ever. She seems to love preschool, and her teachers both tell me she is a big flirt with the boys at her lunch picnic table. Layton and I have come to learn that Macy will do anything for a laugh. Well, apparently that is how she feels at lunch with her preschool boyfriends. She puts napkins on her head and does silly things to get everyone laughing!
Another new thing for Macy is setting the table. One night while I was cooking dinner (which seem few and far between the more pregnant I get!) Macy asked me for "nakin" napkin. I handed her one, and she reached in the drawer for more. Then, she went to the table, and as she set each napkin down in front of the chair, she said the person's napkin who sits there (and the she got each of them right.) Apparently, I handed her one too few, and she came back and said "Mommy nakin?" So, I handed her one more and she set it at my place. Then, I handed her spoons, and she did the same thing. I was really impressed with her trying to be helpful and doing a great job at it! She really seems to be maturing!
We are pretty sure Macy has an ear infection. She is acting fine, eating great, etc., but she has a diaper rash (a sure indicator something else is up with her) and she has cried out in the night lately. I imagine we will be off to the pediatrician early this week. Her ear tubes have fallen out, and I have a gut feeling we will be in sooner than later for another set!
That is what keeps up busy around here. A couple weeks after the baby is born, we will start with our round of checkups with Macy's doctors. We have an endocrinology (growth), nephrology (kidney), and 3-year checkup in early November. Won't that be a blast with a hysterical 3-year old and a newborn? Well, we will cross that bridge when we get there.
I promise we will update (on time for once) when the baby arrives on Thursday. We will post her stats and pictures sometime that day. We are praying for a healthy delivery and a healthy baby! What a joy it would be this time to have a baby come out crying, pink, and healthy. Layton and I would be so thankful to get to hold her and enjoy her without the anxiety of seeing a sick baby taken to the NICU! Thank you in advance for your prayers for this delivery. We are blessed by each of you!

Monday, September 18, 2006 10:43 PM CDT

Fall is in the air, and we are so excited about it! Only in Texas can the temperature be a high of 85 degrees, and everyone starts thinking it is fall! But, honestly there is something in the air that feels like autumn!
We have had a couple of busy weeks around here. Our family is "nesting" as we get ready for the baby to come! October 12th is the big arrival day! Layton and I can hardly believe it is just over three weeks until we have another girl! With all that has gone on this summer, my pregnancy has flown by. It is only now as I waddle around and get heartburn from a glass of water that I am really feeling the end of the pregnancy!
Macy's bloodwork came back, and it looked like it usually does. The nurse at the pedicatrician put a little bit of fear in me when she called and said there were some slightly "off" numbers in her kidney bloodwork. However, I spoke with the nephrologist, and he thought the numbers were pretty typical for Macy, and he felt fine with them. We will just press on with her kidney medication 3x daily until (Lord willing!) if and when God allows her kidneys to balance the acid levels in her blood on their own. (Always a continued prayer!) We will repeat bloodwork at the beginning of November right before we see her nephrologist (kidneys) and endocrinologist (growth).
As Macy is nearing three years old (November 6th), we are starting to graduate from the Early Childhood Intervention program which has provided her therapies for the past three years. The past couple of weeks, Macy has been tested by the school district to see if she qualifies for speech or other services through our elementary school. We will likely have our followup meeting (to find out what she qualifies for) within the next two weeks.
The girls have had lots of fun grandparent time lately. Layton's parents spent Labor Day weekend with us. As always, it was such a fun time, and the girls loved every minute. Ansley was in tears as they pulled off the street to head back to West Memphis.
The next weekend, the girls spent the night with their Popaw and Mimi Allison. After lots of giggling and horsing around on a pallet in Popaw and Mimi's room, the girls finally fell asleep. I am not sure who was more tired the next day- the girls or my parents!
Preschool has officially started back, and the girls seem to really enjoy their classes. Macy wasn't sure about it on the first day of school, but she has quickly warmed up to being there. Ansley is "little miss student" and counts the days until preschool.
Macy has really been blossoming these past couple of months. Before surgery, Macy was more quiet and "go with the flow." It was often harder to tell her personal prefrences and she always went along with whatever Ansley wanted. However, surgery has really put the spunk in her. We think she must feel better than ever. She is very "two years old" these days- everything is "no", she has really developed favorites (monkeys, the color yellow, baby dolls, music), and she is not afraid to let us know exactly what she wants. The stubborn streak in her is pretty funny and we are thrilled (and exhausted) to see her growing up! The girls spend lots of time listening to music, craft projects (I am running out of room to keep them!), and playing babies. We have really been blessed with some nice, healthy, fun time together as a family.
Praise God for all the little and big things in life!
Happy Fall!

Sunday, August 27, 2006 3:55 PM CDT

In spite of our boring month (Praise God!), I thought it was about time to update on the webpage. As far as Macy, we haven't had many appointments this month. She is in need of some new bloodowork to check her kidney function and her growth hormone levels (the endocrinologist is knocking down my door for the results.) We have been avoiding this appointment all month long. We finally made the appointment to go have her blood drawn this week. Ugh! I don't know that I have ever dreaded bloodwork for Macy as much as I do this time. After June, I just can't bear the thought of putting her through anything traumatic. As usual, the pediatrician's office will run a line in her arm and draw out what they need. About 4 weeks ago, I had blood drawn in my arm for my pregnancy. It hurt! All this time, I thought she was hollering because of her fear. But, I had truly forgotten how uncomfortable it can be getting that needle in. So, we would like to think that the appointment will come and go with great results. Assuming all looks well (when will I quit assuming?), Macy will be doctor free until her 3-year checkup in November along with a checkup at the kidney doctor and growth doctor that same week. Then, we will see the cardiologist in December. What will we do with all this free time between now and then? Have a baby!
The baby is scheduled for October 12th. I continue to measure about 3 weeks big (in true Dale baby fashion), and I have been having a lot of contractions. I will tell my doctor about the contractions this week at my apopintment, but he will just tell me to "take it easy." But, being a mom of two and being the personality I am, that is easier said than done.
We start preschool in a week. We are ALL excited. I teach one day a week at the girls school, and I have decided to teach again this year. Layton and I really love the school that the girls go to. The staff is so caring and sweet, and the girls seem to enjoy it. It has been a long summer of staying home, so having a schedule will be refreshing.

"There is a time for everything, and a season for every activity under heaven." Ecclesiastes 3:1

I have been redoing the older girls baby books and starting a baby book for the new baby girl. Going through the old pictures and reading the entries when they were little has made me realize how grown up they are and how fast the time has gone. Layton and I have even pulled out the baby videos and watched them. We marvel at how these little faces are now big girl faces with thoughts, opinons, and personalities. Before we know it, another five years will fly right by us. And, this new baby will have gone from kicks in my tummy to another little girl starting school. Why can't I do a better job of stopping to smell the roses in our life? I always want to be be aware of the moments and not let them slip by us.
My mom always told me to keep a journal of the funny things the girls say so that we can look back on them. Between journals, scrapbooks, videos, etc., we are trying to grab these tidbits of their lives to remember each step of the way. I am thankful that we have these little memories to share with them as they get older.
The bloodwork is on Friday, and we will have results early the next week. I will let you know the results when we get them. May God bless your week!

Wednesday, August 2, 2006 2:31 PM CDT

Layton and I took the girls to Sea World in San Antonio over the weekend. It was really nice to get away and relax for a couple of days. (I say relax, but who really relaxes with two preschoolers on vacation?!) We stayed at a resort in the hill country with a lazy river, bikes, movies, smores, etc. Between that and Sea World, we all had a great time. It was really nice to do something fun with the girls after being "cooped up" at the hospital or home this whole summer.
On Monday, Macy had an appointment with her endocrinologist (growth doctor). As we excected given the past couple of months, Macy did not have significant growth. Her weight was 21 pounds and her height measured 31.6 inches. This was a total of 1/2 inch growth (compared to 2 1/2 inches the 3 months prior to surgery) and a couple of ounces in weight. Although we never kept a copmlete record of her weight during the month of June, we are sure she lost a couple of pounds during her two stays in the hospital. The second time we brought her home from the hospital (after the draining of fluid off her lungs), we got her ready for a bath one night. Macy looked so frail and skinny. Since then, she has definitely gotten her eating skills back, so I imagine most of her time has been spent regaining the weight she had and then lost during surgery.
Today, Layton and I had another sonogram at the high-risk doctor. This is the same time in my pregnancy when we discovered the details of Macy's swelling brain ventricles and heart problems (although there were "red flags" at our 20 week sonogram). We felt so blessed today when the doctor said that everything checked out again just as it should on the new baby's sonogram. She even measures in the 75% for weight already! I was thinking after we left the doctor's office how it could just bring me to tears to get such a good report. After how scary everything was with Macy's pregnancy, it almost feels shocking that God would choose to give us a good report this time. Never again will I hear of someone getting a "good report" on their sonogram and not realize the true joy in that report. Anyhow, we do still have about 10 weeks until this baby comes, but as of now, we are thankful for the information God has given us.

1 Thessalonians 5: 18 "...give thanks in all circumstances, for this is God's will for you in Christ Jesus."
Please continue to be in prayer for our sweet friend, Shelby. www.caringbridge.org/visit/shelbykate
Have a blesed week!

Tuesday, July 18, 2006 3:02 PM CDT

UPDATE: We had Macy's last chest x-ray on Friday. The x-ray showed the fluid to be pretty much gone. The cardiologist told us not to come back until the end of the year!!!!! Wow, what a great thing to hear. In the meantime, we will stay busy as Macy transitions out of the Early Childhood Intervention program (this provides her therapies until she is three years old), and she will be testing for qualifications in the school district program (speech therapy)for after her third birthday.
Next Monday, we will see the endocrinologist regarding Macy's growth. I will give a better update after that visit.
God bless each of you!

As always, life goes by without a new update on the website. Macy goes for another chest x-ray this Friday. I am sure she will be less than thrilled for that visit. We have pulled her off the Motrin as of this past weekend. That way, if the chest x-ray looks good, then she will have been off all her "heart" medicines for at least a week, and we hopefully won't repeat the chest x-ray for a while. Our cardiologist said once she feels like Macy has a clear chest, Macy will not need a heart echo until her birthday in November! What will we do with a couple of "off" months? I guess we will pray that they continue to stay "off" months.
Since we returned home from the hospital, Macy is still not sleeping through the night. She usually wakes around 1am and 3-4am. She is usually crying pretty hard and wants us to get up with her (she simply wants to play). We are trying to wean her off that (like letting a baby cry it out when they are little). Ansley has also been getting up each night feeling scared for one reason or another since our crazy month of June. Layton and I are taking shifts with the two of them and working hard to get everyone in our house sleeping through the night.
In spite of these things, we are so very thankful to be home. We realize that there are so many harder things to deal with than getting up in the night.
Putting our situation aside, we have a family that could use your prayers. I don't know if God has ever opened your eyes to something you never saw before. Layton and I have had this experience in the past week. In our small group at church, we have a few couples that have been our best friends since Ansley was a tiny baby. These couples (along with our families) have been our constant support through all we have experienced with Macy. They have laughed and cried and prayed with us. What a blessing these friendships are!
Last week our close friends, Luke and Paige Strawn, delivered their daughter a month early. A sonogram that morning showed the baby's growth to be too slow as well as a non-functioning umbilicol cord. Shelby Kate Strawn was born on July 13th. Although tiny at 4 lbs. 9 oz., Shelby has been a little fighter in the NICU. She is beautiful with a head full of hair. However, it has been a difficult week for this family. In a heart echo, Shelby's heart showed a VSD- Ventricular Septic Defect. This "hole in her heart" will need to be repaired by open-heart surgery in the first 4-6 months of life. Also, the doctors felt that Shelby was showing some characteristics of Down Syndrome. These things all have been undected in Paige's pregnancy, and the Strawn family has had a lot to deal with in the past week. Their website is: www.caringbridge.org/visit/shelbykate
To go back to the beginning of where I started, Layton and I know that God had bigger plans for our friendship with the Strawns than we ever imagined. While they have been an amazing support to us, we never dreamed that we would be able to offer some of the same support to them. We ask that you be in prayer for this couple, their sweet daughter, and two-year old son, Turner. Don't we just keep you all busy with prayer these days?
God bless each of you this week and THANK GOD for the health He has blessed you with.

Thursday, July 6, 2006 7:57 AM CDT

Some of you may be wondering where the new journal entry was. I have wanted to write each day, but have not had a great chance to sit down at the computer.
Anyhow, Macy's x-ray looked good on Monday so the cardiologist pulled her off the lasiks and diurectics (yeah!- these are the ones that make me have to change her sheets all the time). At this point, Macy will continue on her Motrin twice a day since it is an anti-inflammatory. Three weeks from this past Monday, we will go back for another chest x-ray to see if there is any more fluid.
Macy has pretty much figured out this routine on the chest x-ray mornings. Honestly, she gets upset the minute we pull onto the street of this hospital (we are just racking up a list of hospitals we can't go into easily anymore!) In the radiology area, there are many elderly people there. I try to keep it quiet for the sake of those around us, but Macy is usually crying the whole time we wait. (Unlike the pediatrician's office where others cry too, she is the ONLY one ever crying in this waiting room!) So, we seem to make friends (and enemies) fast in there. Layton always goes with us (what would I do without him there?) so we can take Macy in for her x-ray. The three of us try to keep Macy busy by singing, painting fingergnails, etc.
After the x-ray, Macy is all smiles. That is, until we get up to the cardiologist's office. Then, she is crying and gagging herself out of anxiety. She seems to be more scared of the nurses than the doctors (probably becuase the nurses have to do the "dirty" work of shots, EKGs, etc.) It is always refreshing to see Macy do well and calm down with the cardiologist. And once we leave the hospital, Macy is back to her old happy self again.
I am already finding the monotony of each day (we have been home a lot while Macy is still healing) blend into each other. I had told myself to never be tired of "boring" days again. They are so much better than the hospital. So, I am starting today to make a conscience effort to appreciate each day even if we stay here and do nothing all day long.
I have new pictures to put on, but I probably won't get to it until tomorrow. I will get those up, and then update next week! May God bless each of you this week!

Wednesday, June 28, 2006 3:02 PM CDT

We headed to Presbyterian Dallas bright and early this morning. Layton and I both dread the moment when Macy realizes we are at one of our many hospitals. Today, as soon as she could see the parking garage and buildings, she started crying and pointing to her chest.
Judging off Macy's demeanor the past couple of days, we felt like she seemed fine and has been in great spirits. However, just walking in the hospital for those x-rays felt like such a moment of truth. In our usual routine, Layton took her back for the x-ray (pregnant ladies are not allowed) while Ansley and I waited in the waiting room. The majority of the radiation waiting room is elderly people, so I always feel like I am bringing a three ring circus into the place. However, everyone is kind to the girls.
The technician gave Layton the films for us to take up to our cardiologist's office. Being the curious and self-diagnosing parents we are, Layton and I pulled the films out as soon as we left radiology and were holding them up to the light. In our view, the right lung looked very assymetrical from the left lung which looked clear (the right had a hazy color on the bottom 1/3). Immediately, we both felt kind of sick. Was it fluid? Layton and I could hardly talk as we headed up the elevator. Both of us were on such high alert, it was as though suddenly we were expecting the worst in spite of her great behavior this past week.
The doctor called us back, and she is always so great at trying to be a non-threatening presence to Macy. She removed her lab coat before coming in (to look less doctor-like)and came in to just visit with the girls at first. I couldn't get through the small talk. I said, "We need to know, are we going back to the hospital?" And the good news came out... NO HOSPITAL THIS WEEK! In our inexperience, what Layton and I were diagnosing as hazy fluid was actually Macy's diaphram on x-ray. That area is supposed to look hazy. In the area directly above that is where the fluid usually acculumulates. That area looked mostly clear with only a little bit of fluid. The doctor felt it looked better than last week although not compeltely clear. She thought Macy was getting over the hump of gathering fluid. We will continue Macy on the medications, and we will repeat the chest x-ray on Monday morning. If it still looks to be healing, we will drop the medicine to once a day and repeat a week later. If that x-ray looks good, we will drop all medicine and repeat the chest x-ray one more time to hopefully find a fully recovery. That would obviously be great news. Of course avoiding the hospital would be so nice. Also, it is getting tricky to get these medications in Macy along with her other routine ones and the diuretic is making for wet sheets EVERY single night! But hey, there really are worse things in this world than changing the sheets daily!
So, we look forward to letting our guard down a little more this week. Who knows, maybe we will even celebrate our anniversary now! ha ha Honestly, just to see Macy happy and fiesty and being a total two-year old is the BEST blessing following the past month!
It is our hope that God is blessing each of you in your lives. We will update in a day or two. Have a wonderful week!

Monday, June 26, 2006 3:17 AM CDT

It is 3:15am, and I might as well call my sister. She has a newborn, so I imagine she is up as well. Macy has had a great couple of days. Layton and I were just saying that we think the past two days have been her best since heart surgery 3 weeks ago (was that ONLY three weeks ago?) She is still waking up in the night. A lot of times it is for a drink. However, the diurectics she is on is making her potty around the clock. So, she is peeing the bed left and right. We try to limit drinks around here at night, but she takes her betime medicines in a drink so that makes it a little harder.
Anyway, it was my night to get up with her. Layton had last night. He really is better with our girls in the nighttime. They just respond better to him. As a parent, do any of you know the feeling where you are making all kinds of last minute trades trying to get the spouse to switch you for the job of _____________ (diaper chance, feeding, bathing, etc.)? About an hour ago, I was making a last ditch effort with Layton to go and see why Macy was crying. I just know that he is better with her. He usually is able to get the task done and return to bed in less than 10 minutes without Macy crying.
Anyway, I was on the losing end of that deal, so I went in to see her. She had pottied her bed. The beauty of a trundle is that you can move them from one wet bed to another dry bed until the morning. While I was in there, I tried to do it just like Layton says he does it... "don't talk, keep lights out, make little eye contact"... he thinks this helps her go right back to sleep. But, of course, she was wailing when I left her in the new dry bed to go back to sleep. I waited outside the door for about ten minutes, but she wasn't stopping. I didn't get the feeling that anything was really wrong (beyond just an unhappy two-year old), but then I started second guessing myself... "Did I really check her breathing while I was in there to see if it was normal? Did I give her a chance to tell me if she was hurting?" I peeked my head in to tell her to go to sleep, and she told me her chest hurt.
Now, Layton and I are very sensitive to the heart situation, but Macy is a smart girl who has learned how to get her way. We both have thought she has started to always point to her chest and say it hurts. She knows this gets her attention. (In the same way that she tells you she went poo-poo when she wants out of her highchair at a restaurant. Whenever you take her out to change her, she has never gone. She is a smart girl to get what she wants.) But, in my dilema of thinking if I can go back to sleep while she is crying, I decided to give her Motrin just to be safe. It had been 10 hours since her last dose. So, she was less than happy about that. I followed it up with milk becuase Motrin on an empty stomach for her often gets her gagging. So, I can imagine that will have her peeing in an hour or two. Catch 22!
I decided to go ahead and journal while I was up. It is my quietest time of the day. Really though, Layton and I would MUCH rather be facing a night time of interrupted sleep than to think something was really wrong with her. We can live with the waking up for a while. It is a nice trade just to see her feeling better. Except for a wet bed in the night, she has been waking up happy and not crying in the mornings and at naptime. You probably wouldn't guess what a difference that would make around here. But, the three of us are thrilled when Macy wakes up feeling good.
I want to share more, but Macy has started back up crying. I am off to check on her. We ask (gratefully) that you continue to pray for Macy's chest x-ray on Wednesday morning at 9:30am to be normal without fluid around her lungs or heart.
Sleep tight and God bless you!

Saturday, June 24, 2006 0:50 AM CDT

I have wanted to journal, but I honestly have not had any free time to get on the computer in the past two days. Yesterday was a blessing for our whole family. Macy was able to come home from the hospital! Also, my sister and her husband had their baby (check out the picture page!) We were able to take the girls up to see baby Jillian. By the end of the day, I think we had overdone Macy. Coming home from the hospital along with taking her to see the baby and grabbing a bite to eat really took it out of her. I felt really bad about that. Both girls slept all night which was a first in weeks for our family. Layton and I got up many times in the night to check Macy's breathing.
This morning, Macy started off by taking her four medications (three of which are new since her surgery). For whatever reason (possibly taking the medications but not wanting to eat anything) she threw up all over her and I, the carpet, the tile, etc. not long after Layton headed for work. I was feeling a little unsure of myself as a mother trying to read Macy's cues. The rest of the morning, Macy seemed pretty clingy, quiet, and lethargic. Because of this and the throw up, I was getting nervous that things might not be right. (The week we came home from surgery, she was immediately interested in playing. So, Macy's behavior this morning started to concern me.) Amidst the chaos of a dirty, unpacked house, I spent the morning with the girls trying to decide if Macy seemed okay or not. The pediatrician's office called to check on us, and she seemed a little concerned with Macy's behavior. The nurse mentioned (as I hear so often) Macy isn't a typical cardiac patient, so her behavior can't often be categorized like other kids coming off heart surgery. She has so many other internal issues that it is hard to ever know how she will react to things. I felt even more nervous after hanging up the phone so I called the cardiologist's office. They mentioned I should come in if I felt unsure about Macy's behavior. Of course, I hate to take Macy in unless absolutely necessary because I can only imagine how it will make her feel to be there. (When we went to see Brittney and Seth at the hospital yesterday, Macy got pretty upset when Brittney's nurse entered the room!) Anyhow, long story not so short, I fed her lunch, and that really seemed to help her. I fully expected her to throw it up, but she kept it down and started to play and talk and be normal. So, we avoided the doctor's office for the rest of the day.
We will see how the weekend goes. We are a little concerned that the chest tube wound from the surgery week may be getting infected. It looks a little irritated, so I will probably put a call in tomorrow.
I know that is an earful. I feel so blessed to be home with the four of us together. But, in all honesty, I am ready for June to come and go. My machine blinks with calls from therapists and doctors all wanting to reschedule from this past week, and I just don't even know where to begin to catch up. I must sound like such a complainer. We must truly take it day by day.
On my last post, I put the words to a song that I can't get out of my head the past couple of days. It really gets the core of not understanding why God doesn't take your pain away, but still believing in His power no matter what. There is another song that I heard that very same afternoon on the radio (was God trying to speak to me or what?). I have heard this one many times before, but it really took on some meaning for me that day. Here are the lyrics, and they touch on that same feeling- for any of you who have ever felt that way.

Blessed Be Your Name
by Tree 63

Blessed Be Your Name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name

Blessed Be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed Be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name

Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name

I felt worn down this afternoon. Macy threw up her Motrin about 4:30pm all over the carpet because she didn't want to take it at all. I felt like screaming. Both girls are watching me at this moment to see how I am going to react. And, I just want to say, "I can't do this." But, somehow, we all keep breathing and moving on from these frustrating moments. I wait for these difficult moments to get further and further out from one another. Until then, we will take it day by day.
Our next chest x-ray is scheduled for Wednesday morning. Layton and I feel so anxious about this appointment. How will we react if the fluid is back, and we have to go back into the hospital again? It makes my eyes feel with tears just thinking about it. I need to pray (with full confidence) that this time can be different and Macy's lungs can look clear. If you are praying for us, will you pray this, too?
It is after 1am in the morning. I really should get to bed. God bless you this weekend!

Wednesday, June 21, 2006 10:46 PM CDT

It is late, but I wanted to try and get in another journal before I go to sleep. Macy had a good day today. She was able to eat and keep her food and juice down completely, she was more playful and like herself, and her chest tube continued to emit very little fluid. Late this afternoon, the ICU doctor got orders from the surgeon to remove the chest tube. He gave Macy some "goofy juice" and then took her tube out. She was kind of loopy for a while and almost hyper. She was throwing her pacifiers, trying to climb out of bed, and waving at each nurse that came in the room (unlike the typical crying as soon as anyone dressed in medical attire comes into the room). It was really nice to see Macy in better spriits. Her "goofiness" wore off after an hour or two, but she relaly stayed in a pretty good mood. With her chest tube out and her IV unhooked from the machine (it is still in place in her arm if needed, but it is not currently hooked to anything) she felt like a free woman. She wanted down to walk around the room. Macy was a little unsteady on her feet, but she was determined.
The cardiologist came by and was thrilled to see Macy doing well. Since there were no rooms open on the cardiac recovery floor (there were some open in the regular pediatric recovery floor, but that floor contains all types of cases including children with infections, etc.) our cardiologist and surgeon decided to keep Macy in the ICU where it would be considered cleaner. If her chest x-ray looks good in the morning, we will likely be discharged tomorrow morning.
There is still a little bit of fluid near Macy's lung. However, it didn't come out with the chest tube, and Macy will go home on a diuretic and an anti-inflammatory to help the body (hopefully) absorb this fluid on it's own. Next Wednesday, we will return to our cardiologist's main hospital (we were there this past Monday for our appointment with her) to have a followup chest x-ray and check for fluid. It is my prayer that this x-ray will shown NOTHING abnormal, and the body will be correcting the problem on it's own.
Thank you for sustaining us with prayer this week. I was really struggling earlier this week. I felt tired and weak and I really asked God, "Why?" I know we are not supposed to understand everything on this earth, but I was asking Him for relief for our family. I just couldn't understand why we had to face this. Then, on the way home from the hospital tonight, I heard this song on the Christitan radio station for the first time. It brought me to tears to hear the words, and to feel like they expressed the pain I had felt this week. The song is by Casting Crowns, and it is called "Praying Through This Storm." If you get a chance to hear this song, I think it is so appropriate for anyone struggling to get through something hard while hanging onto their faith. Here are the words:

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen"
and it's still raining

As the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God
Who gives and takes away

Chorus:
I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry You raised me up again
My strength is almost gone
How can I carry on
If I can't find You

As the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God
Who gives and takes away

Chorus

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

I really think God played that song for me on the radio tonight. Just to hear the words and realize someone else had felt like they could "barely hear God whisper through the storm" was exactly how I had been feeling. I don't even pretend to have the strength that this song portrays in it's faith (although I think it is a great goal to try for), but I knew that sometimes it is hard to hear God when we are in a struggle. Even though He is there the whole time, it doesn't always feel that way. This song comforted me, and maybe it will be able to comfort you when and if you are feeling picked on.
Tomorrow morning is a big day for our family for two reasons. The first is that Macy will hopefully come home. The second is that my younger sister and her husband are having their first baby in the morning!!!!! And, what a shocker- it is another girl in the family! I am so excited for what the morning holds. It will be so fun to add a new baby to the family- especially one we can hold and enjoy, but we don't have to get up in the night with! :)
We will be busy as you can imagine in the morning. I will try and update when the baby arrives and when we know more on Macy's discharge.
Have a wonderful night!

Wednesday, June 21, 2006 7:20 AM CDT

Macy seemed to have a great night- in spite of the Mavericks losing game 6! She slept right through the game and up until 3am. When she woke up, Layton said she was in a great mood and ready to play. She ate some Teddy Grahams (the first thing she has kept down since we have been since we checked back into the hospital.) She watched a video, and Layton said she was being more like herself. As of now, we still have no for sure answer on the chest tube fluid. The doctor says the culture they are growing for infection has not yet grown anything- a good sign. Usually the culture will grow something within the first 48 hours (tonight will be 48 hours since the culture was started).
We are now waiting for the doctor to round and get his take on when we will remove the chest tube or possibly get to go to the recovery floor.
I will update once we know more from the doctor!

Tuesday, June 20, 2006 4:09 PM CDT

This is the first chance I have gotten outside of the ICU today so that I could eat and update. Macy has had a decent day. Her chest x-ray showed some lingering fluid above her lung. It is not a substantial amount but it would be better to come out (especially since it is not determined if it is infectious yet- we may have results tonight or by tomorrow night.)
This morning, it was detrmined that her chest tube might have a kink in it, and it needed to be shifted a bit. So, the doctor sedated her, removed the sutures, replaced the tube, and sutured it back in. Because of the sedation, she was in and out of sleep for most of the morning. Popaw (my Dad) and I stayed with her during the day so Layton could catch up on a little sleep from the night.
Once Macy started to wake up, she tolerated watching one of her singing videos. There are Macy moments where she taps her foot to a song or smiles when I show her a funny flashcard or picture. But, between those moments she is a little agitated to be in that bed. Who can blame her?
In the early afternoon, Popaw and I decided to ger out of bed so she could sit up. This is usually more complicated than it sounds because of all the tubes. As soon as she set up, she wanted to drink some. She went to town drinking, and I let her drink more than she should (against my better judgement)- she wanted it so bad that it is hard to refuse her if it makes her feel better. I think the combination of sitting up and shifting the fluid in her lung (which is good to move around) while drinking so much wasn't a good idea. She started coughing and then threw up every bit of drink she had in her. While it might have helped to get some of the mucas out of her chest, it was a mess- primarily me and the floor. We got it all cleaned up, and she seemed to feel fine again after that.
The doctors should be rounding in the next hour or two. WE are hoping that the tests on the chest fluid will not prove to be infectious. Also, we are hoping the diuretics will help to get the fluid off her lung until she can fully recover. These are our current prayer requests.
If I am able to get out of the ICU, I will update after that.

Monday, June 19, 2006 11:01 PM CDT

UPDATE JUNE 20 7:35am: I am about to head out for the hospital. I talked to Layton earlier this morning, and he said him and Macy had a hard night at the hospital. Every time she woke up (as the sedation wore off), she was pretty agitated. Then, she would start breathing heavy. Layton said at times he would start to worry himself like things were getting worse. When we were in the hospital two weeks ago, we did that all the time. It is so easy to see her act one way and suddenly think things are falling apart. I really think that it is harder when you are alone with her up there not to convince yourself things are so bad. So, hopefully we can be encouraging to each other up there today. Not to mention that she was woken up at 3am for bloodwork and 4am for a chest x-ray.
I tried to remind Layton that even with the fluid on her lung, she was playing at the hospital carosel and fountain a little over 12 hours ago (and being herself). And if her chest x-ray and chest tube output look decent, then whie it is hard to see the tube and IV be painful and for her feel panicky, it doesn't necessarily mean that things are headed south. (Easy for me to say when I am home with Ansley for about 8 hours overnight.) As great and necessary as hospitals are, they are terrible to be in. As soon as we got home 10 days ago, Macy immediately became alive and herself. I honestly think she will feel this miserable way until we get her home again. The irony is she needs to look and act better to get discharged, but she really won't act better until we leave there.
I will update after the doctors round this morning!

UPDATE JUNE 19 11:15pm: I wanted to update before I tried to get some sleep. We took Macy in about 4:30pm this afternoon. She was singing and totally oblivious on the way there. But, as soon as our tires hit the pavement in front of the hospital, her radar was going off. I tried to distract her at the fountain while Layton checked us in. Then, we headed up to the ICU. That first hour was so hard. Becuase part of her lung was not working correctly, the doctors would not give her a sedative until the IV was in place. (for safety purposes) So, Macy is laying in the ICU bed screaming and gagging while the nurses tape the leads on her chest, attach the toe monitor, take vitals, etc. I really can't even describe to you how that feels as a parent in that moment.
Then, the nurse started the dreaded IV attempt. And, as always with Macy, it just wouldn't work. Layton and I are trying our best to sing to her and distract her, when inside we are dying to see the fear in her eyes. She is begging for us to hold her and yelling "no" over and over. After much trying, the nurses couldn't get one in. They paged a nurse on the floor who did the best with sitatuions that were hard to get an IV on a patient. When he came, he asked for us to leave so he could get done quickly. I think leaving her there was as hard as leaving her on surgery morning. I can only imagnine how scared she was to be back there in the ICU and now here we are leaving her alone in this room with all these strangers. It was unbearable. The nurse practitioner came out to tell us when the IV was placed, and her sedation drug was immediately administered through it. Macy was sleeping as soon as that drug got into her bloodstream, and we were able to relax a little.
About 1 1/2 hours later, we were told her chest tube went in great and over 2 ounces of fluid immediately drained off her little lung. This was definitely the cause for her fussiness at home. However, the doctor said that the fluid did not appear to be fatty (the previous situation I mentioned in my last post which could be treated with a strict non-fat diet). It also didn't appear to be from an infection. At this point, the current speculation is just that some people emit fluid "plural effusion" after surgery. All of the fluid is being sent to the lab and we should have more results tomorrow evening. At this point, the doctor is giving her a diuretic to help the fluid from accumulating- she took these after her fluid buildup at birth. After about a month, the problem healed itself and she came off of them. We would like to think the problem will again heal itself sooner than later. (Have you ever watched a movie where you think you have it all figured out only the realize that was wrong? Then, you make a new theory until another scene in the movie reveals something else. Then you change your theory. That is how Macy's health is to me. Just when I think I have a grasp on how to manage it, a new factor pops up and I have to realign my thinking.)
While Macy's procedure was completed, Layton, I, and my parents had a cozy and romantic anniversary dinner of Schlotzky's in the ICU waiting room. ha ha
When we got back in to see Macy, she was awake, and the doctors had restrained her arms to keep her from pulling anything out while she woke up. In spite of the restraints, Macy was pretty calm- maybe still a little drugged. We started her Bible songs video, and she was tapping her foot and even humming a little. What a good sport she is! As she woke up more, she became a little agitated and the nurse gave her something to help with her anxiety and some pain medication.
In the morning, she will have another chest x-ray and the doctors will measure her chest tube fluid output. These two things will be important in deciding how long our stay will be. The chest tube needs to put out no more than 20-30cc (30cc is one ounce) of fluid in 24 hours. Once that happens, then the chest tube suction will turn off. We will then wait another 24 hours to see if anymore emits on it's own and to see how she is reacting. After 48 hours of little to no emmision, she can have the tube removed and we will be discharged.
I will update you in the morning after the doctors round. I will also try and load on a picture or two that I took tonight.
Goodnight!

Monday, June 19, 2006 2:40 PM CDT

We had our visit with the cardiologist today. This included a chest x-ray and a heart sonogram for Macy. She was on high alert in that hospital, and who is to blame her?
The news we got was not what we hoped to hear. It turns out that Macy has fluid accumluating on her right lung. (This happened after her last surgery at birth.) She has been a little fussier the past two days, and she also grunts before she gets Tylenol (I think I mentioned this in previous journals.) This is because it is harder for her to breathe with the fluid.
The fluid will have to be drained off with a chest tube, so we have come home to pack, get Ansley situated, and go to Medical City Hospital. The doctor and surgeon feel confident that this is a temporary setback (story of our lives), and that we will likely go home in a couple of days. I want to believe that, but it feels like we always are in the small percentage of complications. So, like usual, we will just go one day at a time.
The good news is there is no fluid around her heart. The heart function looks good. The surgeon will test the fluid once it is drained, and we are suspecting it will be a fatty fluid. This is what that means: children with Turner's Syndrome often have trouble with the lymphatic system draining properly after surgery. At birth, she had fluid accumilation on her lung which had something to do with the improper absorption of fat following surgery. (I am sorry if this is sounding complicated.) Following her first surgery, Macy had to be on a special fat regulated formula for about 3 months until the lymphatic system completely healed from the trauma of surgery. All that is to say that if this fluid today is shown to be fatty, the doctor will drain off the current fluid. Then, we will come home in a couple of days, and keep Macy on a very fat restriced diet for a couple of months until the lymphatic system can heal again. This will be a little harder than birth because she isn't just on formula. This kid loves fatty foods (what two year old doesn't), and we have always encouraged high fat foods because of her small weight. So, I imagine this will also set back her growth while she is on the restricted diet. And, I imagine there will not be a lot of eating out for us or eating on the run.
Anyways, I am getting ahead of myself. We are fixing to wake her up, and go to the hospital. I just imagine how scared she will feel when we get this all started back up again. There honestly is no way to explain it to her.
Oddly enough, today is our 7th wedding anniversary! ha ha Happy anniversary to us! What a busy seven years it has been. I am sorry to not be more encouraging to you today. I am pretty down and just feel like this black cloud will never move from over us. I really just want to feel normal again and to not have to carry the weight of how this is affecting both of the girls and Layton. I long to just go out to eat, watch a movie, do laundry! I think I am turning into the oldest 28 year old ever!
I will update you once the fluid is drained this evening.

Sunday, June 18, 2006 5:05 AM CDT

Well, our sleep habits around here feel a little like having a newborn. Maybe that will be one of the last things to return to normal following surgery. I think it is a combination of Macy sometimes being in pain and other times just waking up and not knowing what to do with herself. She has been waking up 1-2 times a night and crying out. Often, she will just take a cup of water and go back to bed. (At least that is how it seems on Layton's shifts!) This morning around 4:30am, she seemed to be hurting. We had given her Motrin early last night because she seemed to have a little harder of a day yesterday and was hurting earlier than bedtime. So, I gave her Motrin again early this morning. I think she has just had it with oral medicines. She goes nuts with every dose now. Often, she panics and I can tell she will asparate a little into her lungs (flashback to feedings as a baby!) I try and explain how it will make her chest feel better, but she is usually just hysterical at that point anyways. I was holding her to calm her down, and she always grunts a lot when she seems to be in pain. Sure enough, about 20 minutes later, her grunting had fully stopped and she was relaxed. We made the not so easy transition of putting her into bed. And, here I am updating her journal.
Overall, Macy is a pretty happy girl. One area that has not become normal since surgery is her wake-up schedule. Every time she wakes up in the night, first thing in the morning, and after a nap, she is crying and upset. I have attributed a lot of this to pain (these moments usually fall when it is usually time for another round of Tylenol.) However, I can't wait to have Macy back to her old self of waking up and singing or looking at books. It is so nice to catch her feeling good at those times instead of crying. Then, I remind myself we are only two weeks out (not quite) from her surgery. How far we have come in those two weeks!

"I waited patiently for the LORD;
he turned to me and heard my cry." Psalm 40:1

I should probably work on implementing this verse in myself a little more. We will probably need a big dose of patience (Macy included) on Monday when we go in for her followup chest x-ray and heart echocardiagram (sonogram)at the hospital. It makes me feel terrible to imagine Macy thinking that the week of her surgery is starting all over again when we get there on Monday. I am praying for a quick visit (yeah right!) and good news!
I will update you after our followup on Monday.
I am off to go back to sleep. We are early service people, so I am going to try and sleep a little more before getting up for church.
Happy Father's Day!

Thursday, June 15, 2006 9:26 PM CDT

Since our crazy night, the past couple of days have been nice and uneventful. The past two days, Macy has really seemed more herself. She has visited with some friends, played a little in the backyard, and been a little more relaxed. I have been able to back off one of her Motrin doses and put in Tylenol instead (which I think is a not as strong- a sign of feeling better.)
Macy is now back on her kidney medication and her growth hormone. Since we have added in these Tylenol/Motrin doses throughout the day, I am having a harder time remembering to keep up with her kidney medicine 3x a day also. Her appetite and her drinking have not returned to normal yet, so it is making it harder to give the kidney medicine (she usually takes it through her sippy cup).
In her hysterics during the night three nights ago, she pointed to her head and cheek when I asked what hurt. She has had about 5 other times (all during the day) where she cries out all of the sudden for about 5 minutes and says that same area hurts. I am not sure what exactly thwhat it is (if anything) to even worry about. If it keeps up, I will ask the cardiologist next week.
We are scheduled to have a followup chest x-ray and heart echo (sonogram) next week. Honestly, I am dreading it. I just feel sad thinking that Macy will likely think that last week is starting all over again when we get to the hospital. Hopefully, it will be quick and full of good news.

"For God has not given us a spirit of fear, but of power and of love and of a sound mind." 2 Timothy 1:7

We ask that you continue to pray for Macy's complete healing. (And, of course, we keep offering up praise for her recovery so far!) I also ask that her little headaches or anxiety or whatever bothers her in those moments will go away.
Have a great week!

Tuesday, June 13, 2006 4:29 AM CDT

Yes, it is 4:30am, and I figured I would journal since I am up. Macy woke up hysterical at 3am. We went into her room, and she felt warm. Usually, if her issue was a bad dream or something, she would calm right down when we picked her up. But, she was so upset even as we held her. I asked her if something hurt, and she pointed to her head. Then, she pointed to her throat. We gave her Motrin again (which she has just about had enough of the oral medications, and she was less than thrilled to take it). Over the next 15 minutes, she really was so upset and kept pointing to her head and throat. Her little head felt so warm. It is at moments like these that I wonder if I will ever relax with her health situation. I am holding her telling her it will be alright. At the same time, I am running through my head if it is something small, or is her heart failing or something else big going wrong. It is one thing to have a whiny, lethargic child. We have had plenty of those nights in our 4 1/2 years as parents. But, to have Macy hysterical one week after surgery, I really needed to just pray over her right then. We paced the kitchen with her until finally she calmed a little, and then finally fell asleep on me. Whatever fever she had broke, because she was sweating like crazy. I wanted to put her back in her own bed, but then I needed to know she was okay. I am sure as surgery gets further and further out, it will be easier to realize that this kind of event is just "a kid thing." Until then, I will just pray that I can do what the Bible calls us to do which is "cast our cares on the Lord." She is now sleeping soundly...if only I was, too!
In spite of whatever was bothering her tonight, she has had a great day. Macy has really come back into herself being here at home. She played almost all day long. She didn't even fall asleep during her naptime. As long as she gets her pain medication on time, she really keeps up the pace around here. As any parent, I am proud to see her desire and drive to get back to her old self.
July 4th- that is a goal for Layton and me. We keep telling ourselves that by July 4th, Macy could be healed and we could officially feel back on our feet around here. It would be great to celebrate one month out of surgery at that point. Lord willing, it will be here before you know it.
Good night!

Saturday, June 10, 2006 7:55 PM CDT

We have now been home a day, and we didn't go anywhere today. It was SO nice to be home together. I definitely think Macy has her days and nights mixed up. And who wouldn't after being in the hospital? There seems to be no day or night in there, and the nurses have to wake you up about every 3-4 hours for labs, vital sign checks, etc. Macy fell asleep around 7pm last night. I went in to check on her about 10:45pm, and she was wide awake. So, I got her up and we watched TV for a while. I also felt like I need to stay in her room the first night. The girls never really sleep in bed with us, so that probably threw Macy's schedule off more to have me in there with her. But, I got in the trundle bed beside her bed hoping to doze off. Anyhow, Macy never actually fell asleep until around 3:30am. We would sing and talk, and I would even doze off some. Everytime I would wake up, she would be there tossing and turning. Shockingly enough, I didn't really mind being up in the night. She was being so sweet and calm, and I really just felt so blessed to have her back home. But don't get me wrong, I would love a good night sleep tonight. I know she will probably do better to sleep alone as usual, but I still feel a little nervous to leave her alone in there until she is a little more healed.
Layton got up with her this morning. In spite of the lack of sleep, she had a pretty good day. She ate pretty good, and she played in the toy room with Ansley. I even saw her climbing up on a little chair in front of her kitchen to reach some things. I know she will set her own limits to what she feels like she can do. I am very proud of how tough she is to get up and get busy.
Even though we see such progress in her, she does tire easily. And as she comes to the end of each Motrin cycle, she points to her chest because it hurts. I know time will heal this. It truly is amazing to think that only 5 days ago she was in an open-heart surgery, and now she is up and getting around.
Last night, I was reading through your guestbook entries again. They really are so special to us. It is amazing to see all the entries- some from old friends, some from new friends, and some from people we have never even met. The support is overwhelming. And as any on you who have been through a tough situation know, they will never be forgotten. I will be 90 years old and probably forget my name, but I won't forget the acts of kindness on our part because of this situation. Thank you again for encouraging us.
I will update in a day or two as Macy continues to heal!
May God bless your week!

Friday, June 9, 2006 1:37 PM CDT

We are HOME! It has been a busy morning so I didn't get a chance to get to the computers at the hospital. The day started off well. When we woke up, Macy was sitting up in her bed and smiling. Sitting by herself and smiling were two great things to see. Then, she got a bath, ate a whole doughnut, got a chest x-ray, and played in the patient playroom. By the time we left the hospital, she was exhausted and whining on the way home.
When we walked in the house, she called out "Annie" looing for her sister. Macy gave a big smile when Ansley got here with her Popaw and Mimi Allison. We let Macy walk back to her bedroom, and she wanted right in bed. Ansley read her a book, and Macy was mezmerized. Then, we left her alone in her bedroom. I figured after almost 5 days of tons of people being near her and touching her, it would be nice to have some alone time. She laid in bed forever just looking around and being content. And, now she is sleeping.
Although I would love to sleep too, we have a pile of mail, about 10 bags of things from the hospital tou unpack and put away, unwatered plants, etc. With Macy needing me while she is awake the next couple of weeks, my only free chance to catch up will be when she is sleeping. The job of a mother never ends...
Honestly, it is just such a nice feeling just to be home, walk around barefoot, and to feel more normal.
We will be hanging around here a lot for the next couple of weeks while Macy recovers. We are supposed to see Macy's cardiologist in 2 weeks for a heart echocardiagram and a chest x-ray. We will probably follow up with her other main doctors once she is recovered also. And, in two weeks Macy's Aunt Brittney and Uncle Seth are due to have their baby. That will be something fun to look forward to for us.
I will try and update you each day as to how Macy is doing. We have a ton of pictures from the hospital, so I can hopefully load some when I journal.
The day Macy went into surgery, I was given a book my Bunko group at church had made for me. It was a flip book photo album. Each page hade a different verse on it, and the book was full of verses from all of the girls in our group. In times of trouble (as well as other times) it is comforting to be able to keep a flip book of notecards or seomthing like this with Bible verses that go along with your particular situation. One of the verses is so profound for anyone in a troubling situation:
"We wait in hope for the Lord; He is our help and our shield. In him our hearts rejoice, for we trust in His holy name. May your failing love rest upon us, O Lord, even as we put our hope in You." Psalm 33:20-22
I want to know this verse by heart. It can work in all situations throughout the day. Then, when I am in the middle of those times, I can just recite that verse to myself for strength.
You all have been strength to us. One of my next jobs is to print out all the guestbook entries and latest journal entries to put in Macy's book. I want this to be a testimony to her one day of God's love and power.
I will update tomorrow.

Thursday, June 8, 2006 6:38 PM CDT

We have officially moved to a patient recovery room. After the nurse gave Macy her last prescribed IV drug, Macy's last IV was removed. She is free to move around. We encouraged her to sit up in bed for a little bit. Then, we carried her down to a playroom just for patients and their parents. It was the first time she had moved from near her bed all week.
The playroom was really exciting for her. She was very wobbly on her feet, but slowly made her way around the room with help from her Aunt Kourtney and Popaw Allison. She played with toys for 10-15 minutes. Then, she had enough and wanted to go lay down.
Today, Macy has also had a better appetite. She has eaten three cookies, a handful of french fries, juice, and some cheerios. Layton was tearing up some french fries for her into little bites, and she just snatched a whole one off the plate her Mimi Allison was holding.
It has been a group effort this week. Layton's parents were able to be here for Monday and part of Tuesday before they returned home. My parents have bounced between caring for Ansley and sitting with us and Macy the entire week. They honestly have been at it from morning to night alongside us. My sisters and brother-in-law have done the same thing with the girls. Our close friends from church have also taken Ansley during the week. We have been overloaded with kindness in the form of visits, cards, treats for the girls, calls, etc. It really is amazing to see the wonderful people God has placed in our lives. I really don't know how someone would get through a trial without faith in God, a close family, and dear friends. These are the ones who hold you up when you can really support yourselves.
We have a chest x-ray in the morning, and we may go home depending on Macy's desire to get around on her own in the morning. It would be so wonderful to get her home to recover. Ansley came up tonight and climbed in bed with Macy to sing and look at a book. Macy wanted to sleep instead, but I can really see that Ansley wants to be with her. I think being home will be good for all of us.
I will update you in the morning.
I put some new pictures on last night. I have more to add, but I will have to wait until I get a computer from outside the hospital.
God bless you!

Thursday, June 8, 2006 7:52 AM CDT

Layton stayed with Macy last night at the hospital. I came on home to be with Ansley. I just talked to Layton, and he said she had a great night. She slept from about 7-10:30pm. Then she got up and was acting like the real Macy. (I can't wait to see that this morning!) The two of them watched a movie. He said she was eating Cheerios like popcorn during the movie, and she drank two glasses of juice. That was great to hear since she wouldn't eat or drink a thing for me all yesterday. About, 1am she laid down in her bed, and slept until 6am! Another bonus (better late than never) is Layton realized the chair we have slept in is actually a recliner. So, he got to lay all the way back for 5 hours of sleep. In moments like these, don't the little things give you such pleasure?
About 6am, the surgical nurse rounded and woke Macy to remove the wires from her pacing box. Being that those 8 little wires connect from the ouside of her tummy to her heart, Macy was less than thrilled to have those pulled off. However, Layton said she was doing better about 15 minutes later. She poined to the bed, laid back down, and she is asleep again.
Honestly, it is so refreshing to hear her acting better and to hear she is getting long stretches of sleep. This is a girl who at home takes a 2-3 hour nap and sleeps a good 11-12 hours at night. Like us, last night was the first night she had really gotten any decent long stretches to sleep.
In spite of being at the hospital, I am really excited to get up there and spend some time with her today. In order to get home, the cardiologist wants her having bowel moments, eating, walking, and a little happier disposition than yesterday. So, that is what we will work on today.
As for Ansley and I, it was really nice to be home together. I have missed just sitting there and being with her. Plus, she needed a bath, we had loads of mail and phone messages, and Layton and I literally didn't have one more thing at the hospital we could wear again.
So, I would like to think we are rejuvinated and ready for the day.
I will update you later this morning!
There are some new pictures posted. I kept the ones off that showed her scar for the faint of heart.

Wednesday, June 7, 2006 10:28 PM CDT

I will keep this brief because I have got to get to sleep. Macy is still in the ICU tonight. She is ready for the recovery floor, but there wasn't an empty bed up there yet. She had a very rough afternoon, but a suppository cleared that up after much grief for all of us (she was miserable prior to that!) After she felt a little better, Macy ate some ice cream for her Popaw and Mimi Allison. She was a little more herself, and then she dozed off to sleep.
Good night, and thank God for sleeping in your own bedrooms! ha ha I will update in the morning after the doctor rounds.

Wednesday, June 7, 2006 2:26 PM CDT

I can hardly believe I am just now getting to a computer for an update. You would think I would end up with free time while we are up here day and night. But, Macy has continued to be very uncomfortable through the night and day. She is constantly squirming and there is nothing that satisfies her. The pain medication she has been taking can cause a very irritable tummy. In addition, when I ask her what hurts she points to her chest and her throat (often sore becuase of the breathing tube.) In addition, all of the ports and tubes are driving her crazy. In the night, she was trying to bite out one of her IVs and she even tried to pull her chest tube out! Throughout the night, she cried out for "Annie! Annie!" (what she calls Ansley).
In spite of this, Layton and I took shifts with her a got a little more sleep than the other nights.
Early this morning, the surgeon's nurse practitioner took Macy's chest tube out. She also okayed the removal of the IV in her left hand, the arterial line in her right hand, and the pacer box that is wired to her heart through her stomach. This really made movement more possible for Macy. In spite of the scar, she is sitting up, getting on all fours, and laying on her tummy. I really think she just likes getting to stretch out. If only we could make her comfortable.
Ansley was cleared to go into the ICU and see Macy today. They have both been askng about each other. Macy was feeling so bad, she wasn't thrilled to have anyone in the room. Ansley was pretty patient with her and got to stay about 20 minutes. She seemed to handle the situation well. I can tell she is tired, though. When she left the hospital, she cried and again told me, "Don't forget I love you." In the hospital fountain yesterday, she threw a penny in and wished that we could all be together forever. Even with the chaos, she is having lots of fun with our family and friends. It will be nice to all be home together though.
Right now, Macy is sleeping in Layton's lap upstairs. It is the first time that she has gotten a long nap- a bit difficult with ringing monitors, people in and out, and constant checks of labs, medicines, etc. I am hoping the nap will put her in the better mood she was in yesterday afternoon. When she wakes up, we are going to give her a suppository to help clean her out and hopefully take the tummy irritation away.
As of now, she is being monitored very little by the machines, and it looks like we may go home tomorrow or Friday. I am a true believer that it is easier to heal at home in the comfort of your own surroundings. Plus, there are no monitors, strange people, etc. In spite of Macy's opinion of the hospital, we have been very pleased with this hospital. Even still, I can hardly wait to take her home.
Layton and I have been so amazed at the outpouring of support. Visitors, calls, cards, etc. How kind you are to check in on us again and again.
If I can get away for a moment tonight, I will update you on how she is feeling. As soon as I know about going home, I will also update you!

Tuesday, June 6, 2006 4:35 PM CDT

I thought I would update since my mood was so down this morning. My family and Layton's family insisted we take a nap this morning. So, I slept for an hour and a half at my in-law's hotel room, and that was much needed!
When we arrived back in Macy's room she woke up super fidgety. She was inconsolable about 45 minutes until her medication was given and took affect. After a nap, Layton got to hold her in his lap. It was a first for us to get to hold her since surgery. It is quite a scene getting her from the bed to our lap with all of the tubes and bags and things. In true Macy fashion, she over-drank herself (the excitement of getting to have a drink!), and she lost it all on Layton.
When I came into the room, Macy took out her pacifier and said, "Hi Mommy!" My heart melted. I really needed that. She reached for me, and so her and I got settled in the big recliner. We watched a kids singing video. She tried to clap along and even did a hand motion or two. Then, we read a book, and she was pointing out a couple of things. Even though she is groggy and would nod off here and there, it was nice to see her being responsive. This was the first moments to have Macy awake and not be miserable. It was so fulfilling to spend that time with her.
At this time, the pacemaker is again on backup, and we are watching her blood pressure and beats for the evening to see how they manage themselves. We will likely hear from the doctor on this issue later on tonight and see if there is any change.
Thank you for your prayers and your encouragement in my sad state. I truly feel refreshed right now. We are about to get to spend some time with Ansley. Hopefully, the girls will get to see each other tomorrow if Macy gets her chest drainage tube out.
God bless you!

Tuesday, June 6, 2006 8:39 AM CDT

We had a long night, and I finally got a chance to get to the lobby to update the website. Macy was very irritable all night long. We got under an hour of sleep. The nurse alternated a pain medication/sedative with something for anxiousness. In spite of that, everything else looked good.
Around 4am this morning, the nurse removed the gauze dressing over her incision, and now she just has little steri-strips over it. I was amazed at how soon they took it off, but her incision really looks nice considering it is less than 24 hours later. Around 5am, Macy had a chest x-ray and bloodwork that looked normal. She did run a little fever this morning, but at this time doesn't seem too concerning to anyone (except her worrying mom!)
The nurse okayed us to give her juice this morning, and that is really when she woke up. She started asking for more juice, and cried after each cup becuase she wanted more. We are trying to pace her with the liquids. She started to get irritable, and she was trying to pull out the millions of lines in her body. (Can you blame her?) So, the nurse gave her something to sleep.
HERE IS THE BIG PRAYER REQUEST: Now, let me start by saying that I have had a total of less than 3 1/2 hours of sleep over the last two nights along with a lot of stress, but I am really feeling down over something from our meeting from the doctor this morning. I mentioned to you yesterday that the doctor put a pacer on Macy's heart to help her heart beat normally. More specifically, it helps the electric circuit in her heart beat on rhythm. As of last night, her heart had returned to normal rhythms. At our rounds with the doctor this morning, the surgeon said that her heart was doing regular beats in the bottom two chambers and double-time beats in the top two chambers. Because of this, he didn't feel comfortable taking her off the pacer yet. The top two chambers need to return to beating in tune with the bottom two chambers for the circuits to correctly work along with the blood pressure. The surgeon said the good sign is that her heart did it on it's own last night which is a great sign. However, it is fairly uncommon with this surgery in particular for it to go back into the misfires in the top two chambers. The surgeon feels that it will work itself out since it did it on it's own last night. It could be attributed to swelling around the area of surgery. However, (me being the glass is half empty in these situations)asked what happens if it doesn't return to normal. The surgeon said if the electrical circuit system of her heart was damaged in surgery, then she would need a pacemaker. Again, he felt this uncommon, but I felt this like a punch in the stomach. Because we are leaving this pacer machine in, we will now continue to stay in the ICU. Honestly, I just feel down for a couple of reasons. One reason is that at night the nurses have multiple patients. When Macy is upset in the night, it often takes 5-10 minutes for help to get to her. I just can't see leaving her upset that long while I sleep in a chair across the room. So, we stood by her side the whole night to comfort her. Because of that, I feel so tired. In the same way, it is hard to leave Macy in the day because I am the one she asks for. I also feel guilt becuase I feel like we will now be putting Ansley off since she really shouldn't be in the ICU with Macy, and we both need to spend the night in the ICU as long as Macy keeps all these wires in. But, the biggest concern is the possbility (no matter how small) of a pacemaker. I just don't understand. Why does each surgery for us always seem to end up in random complications? Anyhow, I think I just need sleep. But, I am asking you to pray, and I am asking you to pray hard. No matter how tiny this possibility of the pacemaker may be, we have been that tiny possibility before.

PLEASE ASK GOD TO RESTORE THE NORMAL ELECTRICAL CIRCUITING IN HER HEART, AND PLEASE ASK GOD THAT HE RESTORE IT QUICKLY.

Layton just came out and told me that Macy had her catheter removed along with the IV in her left hand. That is good news for her, and she is sleeping. I think I may try to rest. I will update later.

Monday, June 5, 2006 7:14 PM CDT

Well, I updated about 3 hours ago amid chaos, and this silly computer would not save my post! Augh! Anyhow, now that things have settled around here, I wanted to update everyone.
Macy has spent most of the afternoon sleeping. Earlier, she would wake up every now and then and be unhappy and fidgety. She was trying to climb out of bed almost, so the nurse was able to give her something to help her rest while she has so many tubes and feels anxious. Since then, Macy has been resting soundly. It is nice to see her that way instead. Can you imagine explaining to a 2 year old to not move too much and don't pull on all the wires?
Even though a huge weight is lifted to have the surgery behind us, I find myself on edge after our recovery when she was a baby. With each little beep on the monitors, I wonder if something is going wrong. I find myself almost expecting something to go wrong. And, I keep asking questions when the doctors or nurses round like, "Is everything seem completely normal to you?" and "Do you feel like she is doing well?" I really need to work on having more faith that this situation can be completely different from the recovery process at Macy's birth...a learning experience, I guess.
As I mentioned earlier in the day, Macy had some slower heart rhythms and had a pacer put on her heart to help speed up the beating. At around 4:30pm, the pacer was put on backup only. Since then, Macy's heart has been beating normal on it's own. It is a big prayer request of ours that her heart continue to beat normally and strong on it's own.
In the morning, it is likely that we will start letting Macy wake up more. Right now, she has 3 IVs, 1 central line for medication and monitoring, one arterial line for measuring air in the blood, a cathether, the pacer wires, and a chest tube. In spite of the superhighway of tubes in her bed, she is only on one medication which is helping with pain and sedation. Sometime tomorrow, it is our hope that the tubes will start getting taken out, and this process will likely continue through Wednesday. It is likely that Macy will be able to be herself more without all the tubes. I really don't know how they get a 2 year old from taking the liberty of removing them all by themselves. If you remember, as a newborn Macy extabated herself (pulled her own breathing tube out) and then was able to stay off. Maybe these kids do know what's best sometimes! ha ha
We were able to spend some time with Ansley today. She is really doing well in spite of the situation. We showed her some pictures of Macy sleeping. When it was time to go, she cried and said, "Mommy, don't forget I love you!" Tugging at the heart strings. It is hard not to feel pulled in both directions.
Our current prayer requests are:
1) Praise for a successful surgery
2) No complications in Macy's recovery
3) Macy's heart to continue beating normal and strong on it's own
4) The emotional well-being of Macy and Ansley
5) A quick and speedy recovery
The other day, I printed some verses out to decorate Macy's room at the hospital, and Ansley colored them. The one hanging over her bed is this:
"On the Lord we have set our hope that He will continue to deliver us, as you help us by your prayers." 2 Cor. 1:10-11
I imagine we have kept some of you busy today. Thank you for your encouragement and your offers to help in so many ways. I am sure we will take many of you up on them as we go.
I will update you in the morning. Hopefully, we will be able to load some pictures tomorrow.
God bless you!

Monday, June 5, 2006 12:34 AM CDT

12:30pm MACY IS OUT OF SURGERY! We just met with the surgeon. He said that her echocardiagram looked great. She is finished and headed up to the pediatric ICU. Macy's normal heart rate is a little slower than normal (which is very common after heart surgery), so she has some pacer wires in to help her heart rate stay normal. These are likely to stay in a couple of days. Overall, her surgery is considered to have gone completely normal.
Layton and I ran upstairs and caught a quick glimpse of her as they wheeled her to the ICU. Her eyes were fluttering (but I think she is still knocked out), and she looked good considering the situation. We will be able to see her in about 45 minutes. She is likely to start waking up a little bit at this time.
I can't tell you how blessed we feel at this moment. God has seen her through this morning, and blessed us with so many people to support us here. We are still asking for prayers for 1) no complications and 2) her heartrate to return to normal on it's own.
Without sounding redudant, thank you! thank you! thank you! I hope that one day we can bless your life through prayer like you have blessed ours.
I will update this afternoon after we have seen her.
Have a great afternoon!

Monday, June 5, 2006 11:30 AM CDT

11:30am The nurse just reported that Macy is off the heart and lung bypass machine, and that her heart is beating on it's own. If I was a hallelujah shouter, I would probably do it right here and now! At this time, a cardiac doctor was coming in to do an echo (sonogram) on Macy's heart to give a second opinion on the repair. They will be checking the blood pressures in her heart to make sure they are within the normal range. During this procedure, the bypass machine is still hooked up to Macy's heart in case a problem is detected, and they need to go back into the heart and repair it. If everything checks out well in the echocardiagram, then the bypass machine will be removed and Macy's chest will be closed up.
While in her heart, the membrane on the aortic valve was also found to have grown over onto her mitral valve. Often, the valve is not thoroughly checked in this operation. But, God has blessed us with a surgeon with enough wisdom and skill to also check this area. He cleaned the membrane out of this mitral valve as well.
If the echo is good and Macy's surgery is completed, we will be seeing the surgeon and the nurse practioner within the hour. We will get a full update on the surgery. Then, we will get to see Macy about one hour later. This is also the time that we are hoping she can come off the ventilator (breathing machine) before she wakes up.
Our current prayer requests are:
1. a normal echocardiagram
2. Macy to come off the ventilator before waking up
3. NO COMPLICATIONS AS SURGERY ENDS AND THROUGHOUT HER RECOVERY

We are overwhelmed with support from you and those here at the hospital. Your faithful prayers are such a complete blessing. I will update you after we meet with the surgeon!
May God bless you because of your prayers said on our behalf!

Monday, June 5, 2006 9:52 AM CDT

9:50 am I wanted to update everyone up to now for the morning. We were up at 4:30am to bathe Macy in an antiseptic, and then we headed off to the hospital. Crazy enough, she was in a wonderful mood. We were blessed to be greeted by about 25 friends and family as we got off the elevator. The elders prayed over Macy and us. She was a little unsure of all the hugging and praying. Without making this the focus of the email, handing her off was one of the hardest things we have ever experienced. Our hearts literally ached to see her go. However, all of our friends and family have been so gracious to keep us busy.
Macy's surgery got started a little late. She went back to get her anesthesia around 8:15am. The surgeon's nurse came out around 9:15am to tell us that her anesthesia was going, and the incision in her chest had just been made. It was a sick and relieving feeling all at once. I knew then that there was no turning back. We couldn't run in there and grab her. At the same time, I knew that she was completely in God's hands, and the next time we saw her the surgery would be over.
At any moment now, MACY IS GOING ON THE HEART AND LUNG BYPASS MACHINE. THIS IS THE MOST CRITICAL TIME AS THE SURGEON WILL BE WORKING INSIDE HER HEART, AND THE MACHINE WILL BE ACTING AS HER "HEART." This is likely to last about 45 minutes, and it will be such relieving news to hear when she has resumed her own heartbeat and is off the machine. I ask of you now to PLEASE BE IN PRAYER FOR A SUCCESSFUL SURGERY AND AN UNCOMPLICATED TRANSITION FROM THE BYPASS MACHINE AND BACK ONTO HER OWN HEART.
I will update after the bypass machine.
God bless you!

Friday, June 2, 2006 9:06 PM CDT

SUNDAY NIGHT:
It is the night before surgery. I decided to keep the earlier post on here since it lists all of the prayer requests. We have just laid the girls down. They have been so silly together tonight, and their innocence to the situation is so refreshing. I think what seems hard is that Macy is playing on the swingset and being silly not 30 minutes ago. Who would ever see her at that moment and know what the morning would bring her? I really can't go into more detail now so that I can keep my composure to finish get ready for the morning. But, my heart hurts.
We are off to pack, pray, and maybe get a little sleep. I am hopeful we can update you in the morning during surgery. Again, the journal below this lists critical times for prayer as well as our overall prayer requests. Thank you for filling our email boxes and answering machines with support. It is humbling. I want each person we come in contact with tomorrow to KNOW THAT GOD IS WITH US!
We will be praying over Macy with family and friends early in the morning
One last prayer request- it turns out that her ear infection is still lingering (as of Saturday morning at the pedicatrician). We ask that you pray this will resolve itself and pose NO risk to her surgery or recovery!
God bless you!

FRIDAY AFTERNOON:
It has been a long day. All four of us spent about four hours at the hospital today. We got Macy all registered, her bloodwork and vitals taken, chest x-ray done, got the low-down on what to do the day before and of surgery, met with the surgeon, got a tour of the place, and the girls met with the child life specialist. Everyone was so pleasant at the hospital, and the girls really did a great job. The least painful and most enjoyable part to them was meeting with Amy, the child life specialist. She talked to them about next week and then let them play "doctor" with a doll dressed like a patient. Ansley even got her own doctor bag to take home with acutal bandages, breathing mask, tubes, etc. Ansley has been "practicing heart surgery" on all of us this afternoon. I really think this was a good experience for the girls and it especially helped Ansley to feel a part of things.
As for Macy's ear, we will try to get in with the pediatrician in the morning. The surgeon said it is usually most effective to have the original doctor take a look at it since they would more likely know the "normal" for Macy and be able to compare if the ear looks cleared up. As for today, as long as her white blood cell came back normal this afternoon (I assume no news is good news), then that showed no infection in the body. So, I guess to be safe than sorry, we will squeeze in another visit to the pediatrician in the morning. And then, we are just going to have fun, and try to enjoy our time together this weekend as much as possible. Although Sunday night and Monday morning will be upon us soon, we will face them when they get here. And, before we know it (or so I would like to think), it can be this time next week, and Lord willing we can be talking about going home. At this point, I should tell you that we are shockingly peaceful these past couple of days. Layton and I discussed how there is NO reason for this except the prayers you have offered up specifically for peace on our behalf. And now, secondary to prayers for Macy's health and complete recovery, I ask that you keep lifting up the peace prayers. I know they will be needed more than ever over the next couple of days.
A good friend of mine asked me the other day what exactly was my biggest prayer request. I drove home thinking about what it is that worries me the most that I would ask prayers for. And, I really think this sums it up:

1) No physical complications for Macy- that she will completely recover WITHOUT ANY COMPLICATION from now until she is completely recovered from the surgery.

2) For the emotional well-being of both Ansley and Macy-
This will be more than hard for Layton and I, but it is the girls that we want to be protected emotionally.

This verse seems to keep running through my head all day long:
Psalm 3:3 "But You are a shield around me, O LORD; You bestow glory on me and lift up my head."

I will hold strong to this verse during this process. I will remember (as I was reminded the other day by another "heart mom") that these kids are not my kids, but they are God's kids. This situation is in His control. Even before Layton and I met each other, God already knew that He would bless us with Macy one day. God knew about her heart, and the situations we would face because of it. So, while this all feels out of control to me, it is NOT out of control to God.
In spite of knowing God is in control, anxiety is still in us. We wouldn't be human if it didn't seem unbearable to put Macy to bed the night before surgery, and to hand her over to the doctors and kiss her "goodbye" on Monday morning. I still don't know how we will do it. Prayer, I imagine.
I will probably journal on Sunday night as long as I can hold it together. And, we will update on Monday morning as are able to throughout the surgery.
Some people have asked about specific times of prayer on Monday morning. Well, here is a breakdown for anyone who is gracious enough to pray on Macy's behalf at the exact times it is needed:
(these are the appox. times the surgeon has given us)

7:00-7:15am We will have to tell her goodbye and leave her with the doctors; she will begin anesthesia and the placement of her tubes and lines

8:15-8:30am the acutal heart surgery will begin

9:00am Macy will go on the heart and lung bypass machine and this machine will function in place of those organs
THE TIME DURING THE BYPASS MACHINE AND THE MOMENTS OF COMING OFF THE BYPASS MACHINE ARE THE MOST CRUCIAL DURING SURGERY

9:30-9:45am Macy will come off the bypass machine and her heart and lungs will function on their own again

10:45-11am Macy will be finished with her heart surgery and taken to the recover floor
THIS TIME IS ALSO IMPORTANT BECAUSE IF SHE IS DOING WELL THEN SHE WILL BE ABLE TO COME OFF THE BREATHING MACHINE BEFORE SHE WAKES UP (I have previously mentioned how much we would like her to not wake up with the breathing tube down her throat!)

12:00pm noon- Layton and I should be able to go into her recovery room with her while she begins to wake up

In advance we thank you for your prayers. They are life changing! I am going to include the long prayer list we have had on the previous journals:

*the complete healing of Macy's heart

*for each doctor and nurse that comes in contact with Macy

*that God's presence will be felt in the operating room

*for the skill, wisdom, and alertness of Macy's surgeon and anesthesiologist

*for the safety of her brain, kidneys, heart, and sodium levels while on the bypass machine

*that she will be able to resume her heart function normally immediately as she comes off the heart bypass machine

*for Macy to be off the ventilator immediately after surgery and to do well with no drinking the first night after surgery

*for a quick and complete recovery and for no return growth of this membrane EVER

*for ALL the details that God knows and we don't

*for Ansley to try and understand and feel secure through this event with her little best friend

*for Layton and I to not be overcome by anxiety over the next couple of days and weeks

Have a great weekend! And, as cheesy as it may sound, hug your kids and be so thankful for them!
God bless you!

Tuesday, May 30, 2006 3:40 PM CDT

Surgery seems to be looming around the corner (Monday morning, June 5th). As you can imagine, our emotions are so mixed. Part of us knows that we have to get it started to get through it and come back home again. At the same time, we just keep trying to wish it away. Overall, we just keep doing normal family things. No one sitting beside us in a resteraunt or out running errands would ever look at us with Macy and have a clue what is about to go on in our lives. Shockingly enough, we have been pretty calm so far. I truly believe that is prayer already at work. I feel it is so important to be strong for the girls and seem totally "normal," that I try not to let myself get emotional at all. At the same time, they are so aware something is coming. At dinner and each night before bed, we always pray about it. I always wonder what is going through their minds as we talk about Macy having surgery. I can't even wrap my own mind around it, much less expect their little innocent minds to understand it.
Ansley seems to have a lot of questions about it. She wants to know how they are going to get to Macy's heart, will it hurt, will Ansley get to see her, etc. We walk such a fine line of tyring to be honest and open with Ansley while at the same time be comforting and upbeat. I can tell in Ansley's behavior that she very worried. When the girls went to eat with Aunt B and Uncle Seth the other night, Ansley started crying and asked if Layton and I were going to have the surgery right then. She seems very concerned whenever we go somewhere. When Layton left for work today, she was kind of hanging on his leg. We are trying to balance our show of emotion. It is hard to not just hold Macy a little longer these days. At the same time, I know Ansley needs all that same love since she seems to understand a little more about the situation. It is a lot to juggle.
Macy had a runny nose all last week. We took her into the pediatrician on Saturday in order to be on top of things before next week. It turns out Macy had an ear infection. She in on a 5 day antibiotic that will end tomorrow. I never thought I would pray for having the surgery, but I am now asking that you pray her ear is completely cleared up this Friday at our hospital pre-op visit. If the ear is not clear, her surgery will be bumped. I really think it would be hard to deal with delaying surgery.
I am sorry to be more emotional in this journal entry. It is just that writing about it really makes me think about the next couple of days, and it is almost too hard to even talk about it. This Friday, we will spend the morning at the hospital getting Macy's bloodwork, chest x-ray, meeting with the child life specialist, and visiting with the surgeon. I just wonder what will be in both of the girls heads while we are there? Will they think it is just another doctor's appointment, or will they know this is the big one we have been talking about?
I think I need to stop writing now since it is really hard to think about, but I did want to pass on some good news. Layton and I had our 20 week ultrasound on the baby today. It was such a blessing that the baby looked and measured completely healthy! Never again will I hear of a healthy baby sonogram and not know what a complete gift from God that is. We were thrilled to know that the heart, kindeys, brain, and all the other big things looked completely normal. Praise God! And, the baby was still a girl! ha ha
This afternoon while Macy was napping, I was playing with Ansley in the playroom. She pulled out this paper plate "tambourine" full of beans she had made in Bible class ages ago. The verse on the outside of it is so simple, and yet I needed it as I am looking everywhere right now to find God's Word.
It said, "Our Lord is great and very powerful." Psalm 147:5
I am really putting my faith in a verse like that. For some reason, God thought we could handle all this right now, and I am counting on Him to get us through it.
Here is our list of prayer request. I know it is long and probably gets old to say the same thing, but we truly ask for you to pray these things for us in our strong and weak moments:

*the complete healing of Macy's heart

*for each doctor and nurse that comes in contact with Macy

*that God's presence will be felt in the operating room

*for the skill, wisdom, and alertness of Macy's surgeon and anesthesiologist

*for the safety of her brain, kidneys, heart, and sodium levels while on the bypass machine

*that she will be able to resume her heart function normally immediately as she comes off the heart bypass machine

*for Macy to be off the ventilator immediately after surgery and to do well with no drinking the first night after surgery

*for a quick and complete recovery and for no return growth of this membrane EVER

*for ALL the details that God knows and we don't

*for Ansley to try and understand and feel secure through this event with her little best friend

*for Layton and I to not be overcome by anxiety over the next couple of days and weeks

I will update after our hospital pre-op visit on Friday.
God bless you!

Friday, May 19, 2006 2:46 PM CDT

There is not any new health information to report since my last journal entry. Basically, we are on the countdown. In my own small way, I am like Jesus praying in the Garden of Gethsemane (Matthew 26:36-42) that "this cup be taken from us...but if it is not possible for this cup to be taken away unless we drink it, may God's will be done." How I honestly wish the we would wake up, and Macy's heart would be healed completely tomorrow. However, I feel that God has told us that we will face this surgery, and He will see us through it.
Overall, we all seem to be doing well with it. We have tried just to not think about it much. Now that we are closing in on two weeks, it is definitely in my mind more and more. As Macy's preschool program, she was front and center of the two year olds, and she danced and did all the motions. She really did a great job, and I felt tears in my eyes. I tried to push the thoughts out of my mind that in 2 1/2 short weeks, this spunky girl of mine would be laid up in the hospital. In the car the other night, we rolled all the windows down and the girls were giggling and kicking their legs with excitement. Out of nowhere, my emotions take over. I feel happiness to see the girls so happy together, and yet I am so full of fear and dread. I see Macy so happy and unaware of what we face, and I love her for her "always happy" spirit. She truly is so easily thrilled with life. Thank God that He blessed Macy to enjoy the small things in life.
On the lighter side, we moved Macy to her big girl bed this past weekend. She has moved into the trundle bed that Ansley started out in. We roll out the bottom trundle each night for her to sleep on so she is close to the floor. The first night was not much fun, but she seems to be very proud of having her own bed. We wake up in the morning each day to find her and Ansley in Macy's bed together reading books and being silly. How do I prepare the girls and the bond they share for the weeks ahead?
I just keep reading this verse that sits on our bathroom vanity:
"The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and His understanding no one can fathom. He gives strength to the weary and increases the power of the weak." Isaiah 40:28-29
Honestly, God is the ONLY way we will make it through the next couple of weeks (and even beyond that!). I can think of NO OTHER WAY to physically, mentally, and emotionally get through this time without His guidance. And, when we come out on the other side, I want to be thankful for every day of boringness that may be in our lives...because boring is really good! I can't wait to be boring again! ha ha Until then, we still ask for prayers over the same topics. I will list them again if you haven't read the previous journals:

*the complete healing of Macy's heart

*for each doctor and nurser that comes in contact with Macy

*that God's presence will be felt in the operating room

*for the skill, wisdom, and alertness of Macy's surgeon and anesthesiologist

*for the safety of her brain, kidneys, heart, and sodium levels while on the bypass machine

*for Macy to be off the ventilator immediately after surgery and to do well with no drinking the first night after surgery

*for a quick and complete recovery and for no return growth of this membrane EVER

*for ALL the details that God knows and we don't

*for Ansley to try and understand and feel secure through this event with her little best friend

Thank you again and again for praying for us. That is the most powerful thing you can do on our behalf.
I have added new pictures.
May God bless each of you this week!

Saturday, April 29, 2006 2:37 PM CDT

We want to thank each of you for your encouraging words. They truly lift my spirits when I feel anxious or concerned about the coming months. I really can't even explain how it feels to think that so many of you are praying for us. Those of you we have met and those of you we haven't met- it is really mind-blowing to think that our family makes your prayer list when I know how it is to have so many others to pray for as well.
Last Thursday after preschool, we headed down to the hospital for Macy's appointment with her endocrinologist(growth hormone doctor). To recap just a bit, we saw this doctor January 6th, and Macy's growth was not impressive from the previous three months. At that time, we started figuring out the connection between that and her kidney problem being a factor for growth problems. So, we started "upping" her medicine dose for her kidneys in order to make sure her bloodwork showed completely normal kidney function. Once this kidney function seemed to be normal, the endocrinologist felt like Macy had a better shot a growing.
Anyhow, after trial and error with the medicine and too many IV lines for bloodwork, we finally got her medication regulated. And, I would like to be the proud mom to tell you that since that visit in early January, Macy has grown from 28.9 inches to 31.1 inches! I am sure those numbers don't mean that much to anyone else, but the endocrinologist and I both felt like that was great growth over the past 3 1/2 months! What a blessing this was! Her weight was up to 20lb. 14 oz. which was up 1 lb. 8 oz. Of course, we would like to see this continue to grow since these numbers are still much smaller than the average two year old, but we are headed in the right direction! Thank you for your prayers on this matter.
Macy cried through the whole weight and height check (of course, I feel like crying every time I have to weigh also!) Then, we went in to see the doctor. Macy was a bit apprehensive at first. But, being the good humored doctor that we have, she "examined" Ansley first. It really is so neat to watch Macy relax when Ansley goes first. For example, the doctor wanted to check Macy's tummy, and Macy said no. So, the doctor checked Ansley's tummy, and next thing you know Macy is pulling up her dress for her turn to have her tummy checked. Even though it gets crazy taking them both to the doctor sometimes, we really feel Ansley is a calming presence for Macy.
Now, we are just on the dreaded countdown for surgery which is the morning of June 5th. I am going to copy our prayer requests from the previous journal entry as they are the most pressing issues for Macy at this time.

*the complete healing of Macy's heart

*for each doctor and nurser that comes in contact with Macy

*that God's presence will be felt in the operating room

*for the skill, wisdom, and alertness of Macy's surgeon and anesthesiologist

*for the safety of her brain, kidneys, heart, and sodium levels while on the bypass machine

*for Macy to be off the ventilator immediately after surgery and to do well with no drinking the first night after surgery

*for a quick and complete recovery and for no return growth of this membrane EVER

*for ALL the details that God knows and we don't

*for Ansley to try and understand and feel secure through this event with her little "mini-me"

I went to get my little verse journal, and I had a piece of paper fall out with the verse Psalm 3:3. Then, I opened my journal and opened to that same verse. So, I think God is putting it on my heart to share it with you today.

"But you are a shield around me, O Lord; You bestow glory on me and lift up my head." Psalm 3:3

It is God's gift to each of us that He is "shield" around our lives, and I hope that you are feeling that presence from Him as we are.
God bless you!

Saturday, April 22, 2006 8:47 AM CDT

Update for meeting with Macy's surgeon:
Layton, Macy, and I went to meet her cardiac surgeon yesterday morning. In spite of the reason for being there, it was really a good meeting. The surgeon is very nice and seemed to be great with Macy. In addition to having great "bedside manner," he did a great job on explaining things in detail to Layton and I (on our level) and answering all of our questions. Not including the anesthesia, placing of IVs and other lines necessary for surgery, the actual heart surgery would be about 2 hours. She will be on the heart and lung bypass machine approximately 30-45 minutes. This is the crucial time where her heart is stopped. He explained in complete detail what he would do during the surgery along the way. We appreciated his honesty as well as his complete encouragement for Macy to do great during and after the surgery. For those of you who may be interested in the medical side of things, her heart surgery is called a "resection of the sub-aortic membrance."
We scheduled the surgery for Monday, June 5th. We have to be there bright and early that day, and surgery will begin around 7:30 am. The actual heart part of the surgery will be around 8:30 am. Following surgery, it will take about 1 hour to get her transferrred back to the ICU and made comfortable. At that time, Layton and I can go in and be with her. That will be sometime around noon.
The doctor said that if the surgery goes well, Macy will be off the breathing machine and starting to wake up when we get back to the room. I am so prayerful that she will be off the ventilator when she starts to wake up. I can only imagine how weird it would be to wake up and have a big tube in your throat helping you breathe. So, I am going to ask God that she is doing well enough after surgery to immediately be taken off the ventilator.
The doctors are very aggresive with pain management, and she is likely to feel more groggy from surgery but not feel much pain. We were so thankful to hear that her pain would be low.
Another hurdle for us will be the first night after surgery. Children can't have anything to drink that night because of the possibility of getting sick after anesthesia. Well, Macy is the "heaviest drinker" we have ever seen. This kid could have a sippy cup strapped to her arm at all times. I imagine trying to explain "no drink" to her for the whole night will be difficult. But, we will pray for the small and big things, right?
If all goes well, she can come up by the weekend. I really can't even imagine the day that we come home from the hospital, and the major event is "behind" us. I imagine it will take some settling in once we get home, but that will be such a great feeling to walk into the door of our house. I have always felt like Macy really blossomed once she got out of the hospital environment and into our home when she was a baby. I think recovery can be the same way. It is so nice to just be in your own bed.

That is the bulk of it. The Friday before surgery we will go in for Macy's bloodwork and chest x-ray (to make sure she is not congested or anything prior to surgery). Until then, we will just enjoy life and do our "normal" thing.
I was thinking yesterday that two months from now, Lord willing, we will be home and going on with life. The thought of surgery won't have to be in my brain 24 hours a day. I truly look forward to that feeling. Until then, our prayer plate is full. We listed some specific prayer requests on the last journal entry, and I feel they are still the same:

*the complete healing of Macy's heart

*for each doctor and nurser that comes in contact with Macy

*that God's presence will be felt in the operating room

*for the skill, wisdom, and alertness of Macy's surgeon and anesthesiologist

*for the safety of her brain, kidneys, heart, and sodium levels while on the bypass machine

*for Macy to be off the ventilator immediately after surgery and to do well with no drinking the first night after surgery

*for a quick and complete recovery and for no return growth of this membrane EVER

*for ALL the details that God knows and we don't

*for Ansley to try and understand and feel secure through this event with her little "mini-me"

*for Layton and I to make the right decisions for Macy as well as to feel at complete peace throughout this whole event

Thank you for continuing to read our journals. They are long and often full of requests for you to pray. As we have told you before, you will never be able to imagine the difference they have made in our lives. Layton and I always credit the peace that we feel in these times to the amount of prayer being offfered on our behalf.

"Do not let anything seperate us from your love. When trouble, HARDSHIP, persecution, danger, or any need arises, let us remember that we are more than conquerors and that nothing can seperate us from the love of God that is in Christ Jesus our Lord." romans 8:35-39

"The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and His understanding no one can fathom. He gives strength to the weary & increases the power of the weak." Isaiah 40:28-29

That last verse lets me know that God's understanding completely reaches to how protective we feel about Macy right now. And since He "incresases the power of the weak," we can be confident that He will get us through those low times ahead.
Again, thanks for listening to me run on. The girls want to swim today (Only in Texas in April, right?), so we are off to get them ready.
Have a great week!

Tuesday, April 18, 2006 4:25 PM CDT

I seem to have all kinds of information to share today. I just need to sort it all out. Well, there is really no way to preface this one, but we are expecting baby #3! We have known for a while, but I just felt we would get past the first trimester before I posted it. Overall, I have been feeling just like my two other pregnancies- some queasiness and tiredness. But overall, I really can't complain. We are 13 1/2 weeks along and due in October. Even before we found out about this baby, we have been praying that God bless us with a healthy baby. As I have mentioned in the past, I have learned since Macy that I can have anxiety over health issues. So, I have also prayed about peace during this pregnancy. And so far, God has blessed me by feeling very peaceful about the next 6 or so months. We went in today for our first high-level sonogram. As you can imagine, we will be having these because of our pregnancy with Macy. These high-level machines seem to magnify everything, and Layton and I were so thrilled when the doctor said that so far everything looked and mesaured very healthy. He specifically checked my umbilicol cord (which was missing an artery last time- a sign of birth defects), and the cord was copmletely normal this time! This good visit was such an answer to our prayers. I know that there is still more pregnancy to go (a lot more!), and we will be seeing the high-risk doctor again in about 7 weeks, but praise God for allowing us to get a good checkup today on the baby. Also exciting news is that it looks like we are having another girl! Are you really shocked? We were not shocked at all. We are very excited for the three girls to all have each other. Macy will be turning three and Ansley will be turning five right around when the baby is born!
Our other news is not quite as happy. We went in about a week ago for a routine heart echo (sonogram) checkup. We honestly had not given it a second thought as these have always been routine. Well, at our visit, Macy's heart echo showed that the membrane (or skin tag as I like to relate it on an easy to understand term) under her aortic valve has seemed to grow quite a lot over the past year. It is now 50locking the blood flow through that valve. If this grows much more, it will become a serious threat to her heart's blood flow. Because of this, Macy's doctor said it is time to remove the membrane. As you may guess, we were completely sideswiped. Not that we could ever by "ready" for surgery, but we truly hadn't expected this for a couple of years. The good news is that it isn't necessarily a problem with her heart function. Once this is removed from the heart, the blood should be able to flow through fine indefinitely. The very difficult part for us as parents is knowing that this will be an open heart surgery (her last surgery was a closed heart surgery under her arm), and she will have to go on the heart and lung bypass machine.
We are meeting with the surgeon this Friday to discuss possible dates, and it is likely to be sometime in June. If all goes as planned, her hospital stay would likely be 5-7 days. We will learn a lot more on Friday, and I will update you after that.
Now that I have shared all the facts with you, I again ask you to be prayerful on our behalf. I truly know that God has allowed us to continue this website in preparation for the prayers we will now need over the next couple of months. As Layton and I are learning the hard way with Macy facing this surgery and a baby on the way, we do not always understand God's timing. But, we do know that God's time makes sense to Him even when it doesn't make sense to us.
I ask specifically for you to pray for:

*the complete healing of Macy's heart

*the wisdom and ability of each doctor or nurse that works with her

*no complications to her heart, brain, kidneys, and other areas following surgery

*all the other details that God knows that we don't

*Ansley's understanding of her little sidekick going through this situation

*Layton and myself to make the right decisions on behalf of Macy

*our peace and anxiety level through this entire event

Is that a long enough list or what? All in all, I just ask for your prayers. Tomorrow, we see the endocrinologist for her growth hormones. I am feeling a little "appointment-heavy" this week- four appointments and one therapy.

I have shared these verses before and they may seem old to you. But in light of our situation, I find them taking on a new meaning to me.

"Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The Lord is my portion, therefore I will wait for Him."
Lamentations 3:22-24

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God."
Phillipians 4:6

"Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go."
Joshua 1:9

May God bless each of you this week. I will update after our surgeon appointment!

Sunday, April 16, 2006 10:29 PM CDT

Sorry for the delayed update. After a busy day with church and eggs hunts, I am dozing off. I will update on Tuesday afternoon!
God bless you this week!

Wednesday, March 15, 2006 3:29 PM CST

I wanted to get my (overdue) post on here about Macy's kidney sonogram and blood work from two weeks ago. That was not the most fun week for Macy, and we are glad to be done with it. We had Macy's bloodwork done on Tuesday. On Wednesday afternoon, the pediatrician called- usually it is just the nurse who calls. I told the doctor that she must have really good news or really bad news to be making the call to me. In fact, she had good news. Macy's lab number was a 21 (normal is 21-32). While it is on the low end of normal, IT WAS NORMAL! That means that we had finally found the correct dose of kidney medicine to make Macy's kidney function normal! It was thrilling news! Because this has been regulated, Macy's doctors are expecting the growth hormones to be able to work much more effectively. The next couple of months will hopefully show a lot of growth.
On Friday of that same week, the four of us headed downtown to the hospital bright and early. Macy had a sonogram on her kidneys. As you can imagine, these sort of things are always traumatic for Macy (would any two year old love it?). But, the technician we had was wonderful. She was a grandma of a little girl also named Macy. She was kind and patient with Macy. Ansley laid on the bed with Macy and sang her songs while the sonographer did her thing on Macy's back and tummy. In spite of these not so fun moments, Layton and I always love to see the girls working together to comfort each other. Ansley seems very sensitive to Macy during bloodwork, sonograms, and most all medical procedures. It is funny how Ansley doesn't even question the fact that Macy seems to have these events over and over. It is just our "normal" at this point in life. But during these moments, I see a very nurturing side to Ansley, and Macy responds really well to it.
We met with the doctor later that morning. He said the report showed that Macy's kidneys were not connected. This can be a characteristic of Turner Syndrome, and we were so glad that the report showed normal kidney shape. Everything else looked like it should which is a definite praise.
The kidney doctor suggested another test called a VCUG. It check for kidney reflux. While Macy is not likely to have it, the reflux usually presents itself in a urinary infection. If she ever got one, it could cause more kidney damage. In order to be conservative on the issue of her health, he suggested we test her in early May for this.
While Layton and I think highly of this doctor and his opinions, we are unsure of going through with the procedure. It involves a catheterization, and a dye being used in the urine to view output on an x-ray. (I hope I am not grossing you out!) Because of the painfulness of the procedure, the patient needs anesthesia. This is a concern for us. Since Macy has never exhibited any signs of concerns for kidney reflux and because of the large amounts of necessary procedures Macy already deals with, we are not thrilled about the prospect of more anesthesia and another "not so minor" event in the hospital. I am going to call her pediatrician to discuss it with her.
In the meantime, Macy is scheduled to see the cardiologist on March 7th and the endocrinologist in March as well.
Early Childhood Intervention, the therapy group that Macy works with, called today and would like us to bring Macy and present her story to the United Way (a large contributor to the ECI program) at the end of March. As always, God is using Macy's continuing story for His glory.
My long entry must end here because Macy has decided not to nap today- she has some lovely diaper rash that won't go away! Here is a quick verse to share with you:

Isaiah 46:4
Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you.

I imagine the past couple of years will put those gray hairs on me sooner rather than later. Have a great week!

Friday, February 24, 2006 4:13 PM CST

This past week, we had our yearly review meeting with all of Macy's therapists. Most of them have now been a part of Macy's life for two years now, and they have seen such progress in her. We realigned her goals for the next six months, and she will continue on with occupational therapy, speech therapy, and our therapy director. She has officially been "dismissed" from physical therapy and vision therapy because she no longer requires the extra help. Macy is into climbing on stools, kitchen chairs, her crib, etc., and this is therapy within itself to build her muscles and coordination. Because the Early Childhood Intervention program only last until 3 years of age, Macy will finish up with the program this fall. At that time, she may or may not qualify for speech through the school system. Wouldn't it be great if her speech grew and we didn't even need therapy after her third birthday? What would we do with all of that free time? :)
I ended up moving Macy's kidney sonogram to Friday, March 3rd. Her bloodwork to check her kidneys since we "upped" her medication will be this Tuesday after school. I just decided we needed a week off last week. We still had three therapies, but I didn't want to put her through the other things for a couple of weeks since we have been at the doctor a lot this year. We should have all of the results by Friday afternoon of this week.
Please be in prayer for a normal lab reading on Tuesday. That would mean we have found the right dosage of medicine for her kidneys and we would not have to continue weekly blood tests. Also, I ask that you pray for her kidney sonogram to show completely normal kidneys and function.

"The prayer of a righteous man is powerful and effective. " James 5:16

Thank you as always for your prayers and support. I will update after the sonogram!

Wednesday, February 15, 2006 6:59 AM CST

Well, Macy ears are looking better, and that is a praise! We had her bloodwork done again while at the doctor last week. The nurses suggested we would need to strap her to the papoose if we couldn't get her still enough for the needle to go in. Are you getting such a sad mental image? There was no way I could do that, so Layton, one of the nurses, and I did our best to keep her still while the other nurses ran her IV line.
The blessing in the situation is that 5 minutes after we leave the doctors office, Macy is giggling and silly and playing again. Whereas, I sometimes feel traumatized over going through it with her, she honestly is back to her old self once there is a change of scenery. And, I really do appreciate the nurses at our doctor's office who have to work so hard to get the job done even when it isn't fun for them as well.
Macy's labs came back at an 18. That isn't the best or worst we have seen. It is 5 points higher than her last lab (that one in particular really concerned me), so I was thankful to see that the situation wasn't getting worse (judging by the previous labs). However, this number in particular should be about a 21 to be considered normal. So, her kidney doctor suggested we up her medication a little bit, and retest in a week or two. Her new doctor has beeng great about calling to check with me to discuss Macy's labs and changing her medication dose. What is frustrating is that Macy's labs have mostly always hovered around an 18. Our old kidney doctor always brushed that off that "she is a little low so we will just check again in a couple months." And, I just took his word on it since it is very difficult to find information on the Internet regarding the matter. Also, my pedicatrician's office has never had a patient with this problem so they do not know about it specifically. For the past two years, we haven't raised her medication or anything becuase of the old kidney doctor's attitude that it was no big deal. And, now she is so tiny in growth, and there is a correlation between the growth and kidney problem I am learning. But, instead of focusing on what "could have been" with her growth two years ago, I am trying to focus her efforts of changing things now to help her grow now.
We wil be having a kidney sonogram either Friday or Monday, and then I will probably wait and check her labs the week after. I just don't want to put her through a sonogram and the bloodwork in the same couple of days. I will update you after the sonogram probably early next week.
I want to quickly pass on a verse that has been on my heart since the new year. I recite it throughout the day because of how powerful it is, and it is hanging on my bathroom mirror. I keep passing this verse on because it seems to fit any situation someone is going through. I didn't check my old journals, so let me say sorry now if I have already shared this one with you.

Lamentations 3:22-24 Because of the Lord's great love we are not consumed, for His compassions never fail. They are new every morning; great is Your faithfulness. I say to myself, "The Lord is my portion; therefore I will wait for Him."

I love this verse for a couple of reasons. First, I love that "His compassions never fail." To me, that honestly says God can fully understand how I feel when I put Macy through hard situations as well as fully understand what every other single person is feeling in their low times. How amazing is that? It makes it easier to pray to God for strength in those times when I think about how He knows EXACTLY how I feel.
Also, I love that "...they are new every morning." To me, that says that we don't have to figure it all out today. We simply just call on God today for our strengh to get through today. Then, tomorrow, we wake up and call on Him again for that day. Each day by itself seems less intimidating then all of them rolled together to take a situation.
And, I love the part that says, "The Lord is my portion." It is easy to look for fulfillment in our husbands, kids, friends, family, etc. But, God is telling me right here that He is the only thing that will truly "fill" my needs. And, that is so powerful to me.
Okay, sorry for any preaching I did there, but I hope that verse can touch your heart like it is mine!
God bless!

Sunday, January 29, 2006 12:47 AM CST

UPDATE: I TOOK MACY INTO THE DOCTOR ON TUESDAY FOR AN EAR CHECK AND HER LABS. ONE OF MACY'S EARS STILL LOOKED REALLY BAD AND CLOGGED UP. THE DOCTOR COULDN'T EVEN SEE DOWN TO HER TUBE (WHO KNOWS IF IT IS STILL THERE?) OUR PEDIATRICIAN USED A TOOL TO CLEAN OUT MACY'S EAR. AS YOU CAN IMAGINE, MACY WENT COMPLETELY NUTS, AND I THINK IT WAS A BIT PAINFUL. SHE PULLED AT IT FOR A WHILE AFTERWARDS. BECAUSE OF THAT, THE DOCTORS WANTED TO SEE US BACK IN 7-10 DAYS. SHE (AND I) FELT IT WOULD BE BEST NOT TO PUT MACY THROUGH LABWORK AFTER THAT. SO, WE PLAN ON DOING THE LAB WORK THIS FRIDAY AT THAT CHECKUP. IN THE MEANTIME, WE ARE ON TWO PRESCRIPTIONS: AN ANTIBIOTIC AND AN EAR DROP. WE ARE A REGULAR PHARMACY AROUND HERE WITH THOSE TWO MEDICINES PLUS HER GROWTH HORMONE, AND HER KIDNEY MEDICINE 3X DAILY. BUT, AS ALWAYS, MACY FORGETS ABOUT THE DOCTOR TRAUMA OR THE AWFUL MEDICINE ABOUT 5 MINUTES AFTER IT IS OVER. PRAISE GOD FOR THAT! SHE IS CLIMBING AND RUNNING AND BEING THE TWO YEAR OLD GOD CREATED HER TO BE.
BECUASE OF THE DOMINO AFFECT OF MACY'S APPOINTMENTS, I PLAYED SECRETARY AND MOVED AROUND HER THERAPIES AND ALSO RESCHEDULED THE KIDNEY SONOGRAM FOR FRIDAY, FEBRURARY 17TH. THAT SHOULD GIVE US ENOUGH TO GET THE LABS DONE AND GET THE RESULTS BACK. IN THE MEANTIME, WE ALWAYS COVET YOUR PRAYERS. SPECIFICALLY, WE ARE PRAYING FOR: COMPLETE HEALING OF HER KIDNEYS AND HEART, NORMAL LAB WORK, NORMAL LOOKING KIDNEYS IN THE SONOGRAM, HEALED EARS.
MAY GOD BLESS YOU IN YOUR LIFE BECAUSE OF THE PRAYERS YOU HAVE OFFERED UP FOR US. I WILL UPDATE AFTER THE PEDIATIRICAN ON FRIDAY!

Can you believe it- two journal entries in one month? Maybe I will keep logging more computer time so I can update the site!
Layton and I went out of town last Thursday through Sunday with his work. The girls stayed with their Popaw and Mimi (my parents). They also logged lots of time with Aunt Kourtney, and Uncle Seth and Aunt Brittney. While we missed them dearly, the girls had so much fun with my family. I think it took my family a week to regain their energy after all the "fun!"
When we got back, Macy didn't seem to be feeling well. I took her into the pediatrician on Wednesday, and she had a double ear infection. She had seemed congested and unhappy, but I didn't guess she might have an infection. This is her first ear infection since she got tubes last March. It was bad enough that the doctor put her on antibiotics and ear drops. However, her tubes are still in place and doing their job. Sometimes, the infections are inevitable with a lot of drainage.
While we were there, we went ahead and had her blood labs run since we were scheduled to do that on Friday anyhow. The labs came back with her bicarbonate really low (this is the function of her kidneys that we are concerned might be hindering her growth).
On Friday, I took her to a new peditric nephrologist(kidney doctor). These type of doctors seem really hard to come by, but this doctor had just moved his practice into our endocrinologist's building, and she recommended him.
Overall, I was pleased with our visit. He was good with Macy, he didn't rush us and answered all of my questions, and he seemed to have a course of action to follow regarding Macy's low labs. The doctor told me that instead of giving Macy her medicine once a day (like we have been doing) that she needs it three times a day in smaller doses. He compared it to eating. He said if we eat one meal a day, that will work for a couple of hours. But, we eventually get hungry because that one meal can't curb the hunger for 24 hours (at least in my case!). With this kidney problem, the medicine helps to restore the calcium lost throughout the day. She needs little doses throughout the day in order to continue the calcium from being lost and the pH balance from being acidic. Because of this, we now will need to dilute her medicine in a drink 3x a day. The doctor also said he thought it was unlikely her kidneys would ever completely be able to handle this funciton without mediciation. Typically, if this function is going to be restored, it would often be done by now. But as we have all seen with God, He can definitely go above modern medicine and chose to repair something. So, we will still continue to pray for her kidneys to compeltely restore themselves. Selfishly, I don't like the idea of giving her these meds 3x a day for the rest of our lives! With sippy cups, you can't ever finish the whole drink, so then I am chasing her around the house with a straw trying to get her to complete the glass. I also wonder how I will manage this as she gets into school, spends the night away, etc. (Won't it be great when I can bribe her?) However, I truly realize how blessed we are that she is healthy and that there is medication which can help her stiuation. The doctor felt like this is not an indication of poor kidney function. It is just something that needs help with medicine, and can be lived with indefinitely. So, I try to get past any selfish feelilngs, and I will just wake up each day and pray that God will give me the strength and wisdom to do what I can to keep Macy healthy that day. And, aren't we really all supposed to do that for our kids everday?
On Tuesday, we will have Macy's ears checked on, and we will repeat the labs. The last set of labs we did was with a finger prick. Sometimes, the finger prick results can be more innacurate. So, we will repeat her labs by running a little IV line in her arm to check for the most accurate labs possible.
This coming Friday, Macy will have a sonogram on her kidneys. Since we will likely have a long term relationship with this doctor, he would like to take a look at her kidneys now that she is older to determine three things: 1) If she has horseshoe-shaped kidneys, a common result of Turner Syndrome which can put kidneys as a higher risk for complications; 2) if her kidneys are refluxing which would need repair with medicine and possibly surgery (he is not expecting to see refluxing, but he wants to rule it out); and 3)what kind of long-term damage he can find from her stroke.
We will meet with the nephrologist after the sonogram to discuss his sonogram findings as well as the blood labs from Tuesday. If her numbers are low again, we will raise her medication amount and then check the labs a week later to see if that is a better amount of meds. I am praying for her labs to be normal so we don't have to go through labs over and over until we find her correct amount. She is getting so strong, and she is such a fighter during the labwork.
So, there is our earful for the week. For the record, none of this appears to be life-threatening, but just issues that we will be dealing with from day to day. I pray God will continue to make each of these things minor issues and not major issues!
In church today, we were talking about experiencing God's Promised Land here on earth. As Christians, God wants us to experience His blessings here on earth. We read this verse:
"You do not have, because you do not ask God." James 4:2
In Macy's situation, I am taking the verse and looking at it in the positive sense. "If we have, it is because we ask God." (I don't know if my train of thought even makes sense to you!) I know there are many reasons that we can't understand to why God chooses to answer prayers the way He does. But, I will ask in hopes that He will bless us through that request.
I will update you after our appointment on Friday.
Thank you for being part of our lives and listening to our always crazy schedule!
God bless you!

Tuesday, January 17, 2006 9:16 PM CST

I hope each of you are having a great new year. My Mom has been on me to change the pictures on this website. Since the holidays, I have hardly gotten time on the computer, and so my journaling has been few and far between.
Anyhow, Macy saw the endocrinologist to check her growth from the growth hormones. (She has been on them for six months now!) Her weight was up to 19lbs. 6oz. However, her height had only changed minimally. After discussion with the doctor, I told her how hard it was to get Macy to take her kidney medicine. She is supposed to take a large amount each day, and it has to be diluted. Also, Macy is a horrible oral medicine taker. So, we often dilute it in juice in the morning. But,then we end up chasing her around trying to finish off the cup, and there is inevitably always some leftover in the bottom of the sippy cup. Or, I will find the cup later that day where she has sat it down somewhere unfinished. Needless to say, she often doesn't get the amount she needs. I had heard before that if this type of kidney problems goes unresolved, it can lead to growth problems. The endocrinologist informed us that whenever she has a patient with unexplained growth problems, this type of kidney problem is the first thing she tests for. Apparently, it is a very big deal for growth problems if this kidney function is not treated with medicine. Because Macy hasn't grown as much as expected, the doctor is really adamant that we get her Bicitra (kidney) medicine in her daily. Then, we will retest in three months. If her height is still too slow, then we will either raise the Bictra (kidney meidicine) or the growth hormone amount.
I know that was a long story. But, it is a little frustrating because I think I had been telling myself that this kidney problem was "no big deal" and would reslove itself. But, now I feel like it is a bigger deal in the fact that she needs this to be stablized because she needs all the help she can get to grow taller. At the same time, her kidney doctor hasn't changed her medicine amount since right after birth, and I have no idea where to even begin to know how much she might need to be at a high enough level to help her growth.
We have decided to see a new pediatric kidney doctor. They are hard to come by, but there is a new one in the same hospital as the endocrinologist, and she recommends him. We go to see him at the very end of January. My fear in this situation is that now we are going to be testing Macy's blood very often again in order to constantly check her kidney levels until we know the right amount of medicine to giver her to be "normal" range. I ache thinking of putting her through that over and over again. As it is, Macy is terrified of the doctor, and screams the absolute second we walk in the waiting area until we leave the office.
Anyhow, these problems are definitely minor in comparison to the many terrible things that are out there. At the same time, we want to make the best choices for Macy and stay on top of things so that she can grow to her highest potential.
Please be praying for her kidneys to resolve the acid level problem themselves so she won't always be on a mediciation for them. Also, I ask that you pray for the visit with this new nephrologist, and that he will be able to get us on an aggressive path to figure out Macy's kidney situation and growth situation.
We have Macy's 6 month review with all of her therapists in February to evaluate her progress and plan out our therapy schedule for the next 6 months. Since Macy's speech is still pretty delayed, I imagine that will still be our main goal.
At the beginning of March, we will be seeing the cardiologist for a checkup of her heart. Another prayer reuqest there is that the area under the aortic valve would open up (there is currently some tissue buildup on the wall that will eventually have to be removed if it worsens) and be free for blood to pass through.
In April, we will go back to the endocrinologist for another growth check. I will update you at the end of January from our blood checks at the pediatrician next week and the new nephrologist visit.
I feel as though I have given you an earful today. I have also laid out a lot of prayer requests. Truly, Macy is still such a miracle, and in spite of these things, she is a determined and spunky two-year old. We went to a birthday party this weekend at a place with lots of bounce houses. As soon as we walked in, Macy (in typical Macy fashion) ran straight to a bounce us without so much as even waiting for us. She climbed in, and she went to town with all of these 4-5 year olds jumping everywhere. She thinks she is so big, and we feel blessed that her personality is so strong and determined to do what those around her are doing.
John 1:16 "From the fullness of His (God's) grace we have all received one blessing after another."
I also love this next verse. I wonder how powerful it would be if we would read this one every morning before we got ready for the day.
Ephesisans 6: 13-15 "Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace."
May God bless each of you this week and encouarage you!

Sunday, December 18, 2005 9:11 PM CST

Merry Christmas to all of you. I imagine that your lives are busy with Christmas parties, gift shopping, and Christmas cards. This is such a fun (and busy) time of year.
My delay to update the website is due to our computer. We have been switching from one computer to another, and so all of my files and pictures are on the old one. Anyhow, I am slow to figuring out how to load the pictures on this computer so I will add one now and some more this week.
We are doing well around here. Macy will see the nephrologist (kidney doctor) on Wednesday. Her labs came back showing her kidney numbers (the ones we monitor for the acidic level in her blood) to be low like they have always been since birht. Since the numbers are not any better or worse than usual she is continuing on the medicine, and we will discuss with her doctor his thoughts on this matter.
UPDATE: THE NEPHROLOGIST HAD TO CANCEL DUE TO A DEATH IN THE FAMILY SO WE HAVE BEEN BUMPED TO FEBRUARY.
On the fifth of January, we will see the endocrinologist and check Macy's weight and height against her starting weight and height before the growth hormones. It is hard to believe the she had been taking the hormones for six months!
To look ahead a couple of months, Macy will see the cardiologist in early March. She will also have her six month review meeting with all of her therapists in February. Besides the doctors appointments here and there as well as her weekly therapies, Macy is doing great. She has been slow to talk, but who wouldn't with a big sister that talks 24 hours a day! Macy has figured out how to tell everyone that Santa says, "ho ho ho!"
In the midst of all the fun "holiday" activity, I find myself not focusing on the true joy of this season- the birth of Jesus. It is so important to me that the girls know the real reason of why we celebrate Christmas. Ansley keeps wanting to role play the story, and (bossy her) assigns us parts: Macy is always Baby Jesus, I am usually Joseph, and Ansley is Macy. Sometimes, she will branch out and be a sheperd, too. Anyhow, I found this passage the other day for this very matter.
"I bring you good news of great joy for everyone! The Savior - yes, the Messiah, the Lord - has been born tonight in Bethlehen...Glory to God in the highest Heaven, and pease on earth to all whom God favors." Luke 2:10-11,14
May God bless you. I will update after Christmas!

Sunday, November 20, 2005 9:20 PM CST

Happy Thanksgiving!
We spent the weekend in northern Arkansas with my sister, Brittney, her husband Seth, and his family. The weather was so cool, and we rode four-wheelers, fished, and spent a lot of time outside. The girls had a great time (and so did we!) The trip was even more fun because Brittney and Seth announced there are pregnant and due on July 3! We ao so excited, and Ansley keeps coming up with new names for the baby!
Last week, we got Macy's lab results back on the acid level in her blood (a kidney function.) Normal is 21-32. In the summer, Macy's numbers without medication were at 10. This time, the numbers came back at 16. This is still low, but better than last time. It is hard to know if this is improvement or just a number of factors that affect each testing such as what she ate for breakfast, her heart rate and panic level during testing, etc. We are supposed to see the kidney doctor next month. Until then, our pediatrician has recommended that we try the month without the kidney medicine. I have tried to contact the kidney nurse to find out their opnion, but I am still waiting on an answer. I am not sure what possible external "signs" I am to look for if her acid level is too low. It is hard to find adequate information on this subject on the Internet. Hopefully, we can learn more from the nephrology nurse this week.
"In all your ways acknowledge Him, and He will make your paths straight." Proverbs 3:6
"For this God is our God for ever and ever; He will be our guide even to the end." Psalms 48:14
Two years ago yesterday was the day Macy returned to the ICU when her stroke occured. One year ago, we marveled at how far she had come. I think now this second year has rivaled her first year in accomplisments. She has learned to walk, eat normal foods, drink from a cup, go to preschool, laugh, play with Ansley, be funny, etc...
Though we will probably always remember those scary days, we are so thankful for where God has brought the four of us. May you also be thankful for the blessings in your life on this Thanksgiving week!
God bless each of you!

Monday, November 7, 2005 2:05 PM CST

Where is the cool weather? I hope you are getting some of it. We have a high of 85 degrees here today! Augh!
It has been a busy couple of weeks! First it started with the "fall carnivals." Layton and I were talking about when we were kids, we wore our Halloween costumes for about an hour a year as we trick or treated around the neighbhorhood. Now, Halloween seems to go on for a whole week. Every church, preschool, neighborhood, etc. has a "fall carnival". So, the girls got "suited up" for all the fun little carnivals, and then we trick or treated at our neighbors' houses on the 31st. Macy dressed as a kitty cat and Ansley was a ballerina (carnival) and a bride (trick-or-treating)- she couldn't decide!
This past Saturday, we celebrated Ansley's 4th birthday and Macy's 2nd birthday by having a birthday hayride. The girls' friends came over and we had a hayride around the neighborhood, ate smores, played horseshoes, and had a horse pinata. We had fun! It really does amaze me that the girls are another year older. At their party last year, Macy really was not able to enjoy herself. She had only been sitting up for a day, couldn't eat cake or any normal foods, and wasn't into large social crowds. However, this year proved otherwise. Macy "worked" the crowed, danced when they sang "happy birthday", and ate a load of cake. It was again so nice to see how far she has come in a year. Praise God!
Today, we went for the girls checkup, and remind me to NOT schedule those together anymore! Ansley did great, but was less than thrilled for all the immunizations. Macy bordered on hysterical from start to finish of our visit. She really needs my full attention at the doctor becuase it is so scary for her. Obviously, at her age, she can't differentiate which things at the doctor will or will not hurt her. So, she screams her head off at everything- even weighing (Hey, I hate weighing too- what can I say?), height checks, and even the nurses coming into and out of the room. Macy did have to get an immunization, and we did a blood draw today to check her kidney function, thyroid, and growth hormone levels. She has been off her kidney medicines for a couple of weeks now, so we are checking her kidney function on it's own. A huge prayer request would be to ask God to allow Macy's kidneys to be mature enough to function without medicine.
Samuel 25:6 "Say to him: 'Long life to you! Good health to you and your household! And good health to all that is yours!"
Ecclesiates 7:14 "When times are good, be happy; but when times are bad, consider: God has made the one as well as the other. Therefore, a man cannot discover anything about his future."
I will update with the bloodwork results and more Halloween/ birthday pictures later this week.
God bless you!
PS Please be in prayer for our friend Micah. He will be three this Saturday. Micah has a hypoplastic heart, and had his third heart surgery last Monday. His recovery has been slowed down by pain and not being able to keep food down (from best I understand.) His family would love to see him feeling better and home for his birthday on Saturday, the 12! Thank you for your prayers!

Monday, October 17, 2005 3:00 PM CDT

I hope your weekend was fun. We took the girls to the Pumpkin Patch. We picked out a pumpkin, took a hayride, and Ansley got her face painted. Fall is such a fun time of year! If only it felt like fall outside instead of summer!
On Friday, Macy had her 3 month follow-up with her endocrinologist since starting her growth hormones. Macy's measurements on Friday shown that she had grown 1.4 inches in height and gained 2 pounds since we started the hormones. The doctor said this was obviously good since her growth had been slower prior to the hormones. However, the doctor would like to see faster growth out of Macy, and she said it is often more evident in the 6,9, and 12 month followup appointments. Right now, Macy is 28.4 inches tall and 18.5 pounds. These numbers are not even the average for a 12 month old child. So, while the numbers were great and in the right direction, we are praying for an increase in her growing speed over the next 3 months. We told the doctor that Macy's most notable growth to us was in her increased appetite (hallelujah!!!!), her hair, and her feet. Isn't that weird? Her feet went from a size 1 to a 4 over the summer. Who knows if these are effects of the GH or just having her own little growth spurt? Either way, we are thilled, and we are hopeful for more over the next year.
I can hardly believe it, but the girls' birthdays are in less than three weeks. On November 5th, Ansley will turn 4, and on November 6th, Macy will be 2! While we of course have the girly challenges around our house (drama, tears, and whining!), I absolutely love the age the girls are. They play really well together, laugh a lot, and enjoy the same toys, shows, music, etc. Just a year ago when I would go anywhere, I was packing thickened bottles for Macy which she usually just threw back up. We had spit up rags everywhere, and we were in a doctor's office waiting room almost every day it seemed. And now, I take a sippy cup and a diaper, and off we go. She is growing up so fast, and I am thankful for each positive change!
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
I know I have shared this verse before, but I love it. It hangs on my bathroom mirror, and it is refreshing to read it every day.
I also love this simple verse,
"Draw near to God, and He will draw near to you." James 4:8
What another good daily reminder!
May God bless you this week. I will post again at the end of the month.

Monday, October 10, 2005 2:53 PM CDT

Last Thursday, Macy was assessed by the Early Childhood Intervention speech therapist. Overall, the therapist
(and myself) both agreed that Macy's speech skills seemed to be normal, but delayed. The therapist placed Macy at about a 15-18 month old level. We will begin speech therapy twice a month with this therapist. I am very excited to begin the therapy, and get Macy talking! (Always a better alternative than whining, right?)
We are going to see the endocrinologist on Friday. The doctor will assess Macy's growth since beginning the hormones in July. I will let you know what we find out after the apointment.
God bless you all this week!

Monday, September 19, 2005 4:07 PM CDT

My journaling skills are poor. As I type, I have Macy on my lap and Ansley sitting near the monitor so this is likely to be short. Duty calls!
The past couple of weeks have been good, but busy. Like everyone else, our life is busy with school, church, and neighboorhood activities every single day. Macy also keeps us busy with her continuing therapy schedule.
We are going to have a speech therapy consultation the first week in October to assess Macy's delayed speech skills. Like her motor skills were before walking, she doesn't not seem abnormal, just delayed. The speech skills she shows are nice and normal, but speech therapy will hopefully speed those skills along.
We also will be going to the endocrinologist around the second week of October to assess her growth since starting the growth hormones. I am very eager for that appointment.
Macy is really into playing at the park. I included a picture of her playing on the fire engine at the park. As usual, her small size doesn't stop her with trying to keep up with Ansley and the other kids.
Macy continues to be very sensitive with sensory issues. For example, she is hysterical in the swing on the swingset and in the bath. I know these seem like silly and random things. But to her, they are terrible. The bath is our hardest thing to face because it is a daily task. She screams from start to finish. We continue to make it a fun environment with toys, Ansley, and sometimes even snacks. This is something I wish I had better ideas on how to deal with it. I guess even something as small as this issue would be worth praying about. In our ladies Bible class at church, we are doing a Beth Moore study. Something that really stands out to me is the theme of "Believing in God versus believing God." Sure, I believe in God, but do I always believe God? This has been a great concept for me to measure myself with as I feel worry, stress, or frustration. Am I really giving this over to God and believing He will handle the situation? I don't think I always do this in spite of knowing that I should. A work in progress, I guess.
The girls are getting restles, so I have to run.
God bless you this week!

Saturday, August 27, 2005 1:15 PM CDT

UPDATE INCLUDED:
We finally had our checkup appointment with the pediatrician. Since June, Macy has gained a pound and is up to 17lbs. 10oz. Since May, she has grown 2 inches and is a total of 28 1/2 inches. We were pleased with the growth. I don't know how that looks as far as the growth hormones, and we will learn more about that when we see the endocrinologist next month. But, it was great to see her weight gain especially.
UPDATE: I finally got the bloodwork back on Friday. Macy's bicarb level (this shows how much acid is in her blood- something regulated by the kidneys) is a 16. Normal is 21-32. The doctor is not worried because she usually hovers around an 18. However, I am finding it harder and harder to give her the medicine. We have to dilute it so I give it to her with milk or juice. The problem is, half of the time, I find that cup a couple of hours later half full and stashed behind a chair or something. So, I don't think her function is getting worse so much as she is not taking the full dose of medicine. I truly had hoped that her kidneys would at least start showing signs of improvement by now, but these numbers show them getting no better or worse. If you include Macy in your prayers, (in addition to her heart function) please pray that her kidney issues will resolve themselves. Of course, giving medicine isn't the worse thing in the world, but I would like to see some improvement to know that this is temporary for her and that she will not have kidney problems her whole life. (The debate is still up in the air as far as her kidneys healing over time as she grows or if this will always be a problem for her.)

James 5:16 - "Therefore confess your sins to one another, and pray for one another, that you may be healed. The prayer of a righteous man has great power in its effects."

Jeremiah 29:11 "For I know the plans I have for you, says the LORD, plans for welfare and not for evil, to give you a future and a hope."

I forgot to mention this is the last journal entry, but Macy has her first crush. His name is Austin, and he is our fifth grade neighbor. We have become good friends with his family, and his older sister Jordan babsits the girls a lot. About a month ago, Macy started to take to Austin. Each time she sees him come outside, she points and laughs and turns in circles. She cries every time he leaves, and she always wants him to hold her. I posted her picture with him on the picture page, and she points and laughs whenever she sees the picture. We all think it is so funny. Isn't is crazy how the small things in life can bring such joy?

Macy's half year review for Early Childhood Intervention is the second week of September. At that meeting, all of the therapists will meet here, and we will discuss her therapy schedule for the next six months. It is likely we will slow down her physical therapy appointments, and we will add speech therapy. She has lately shown some verbal interests. She says a couple of things and just this week started waving and saying "bye bye" at the same time. But, I think she would benefit from the therapy.
I will add to the post after the bloodwork. God bless you!

Wednesday, August 17, 2005 1:58 PM CDT

We had to reschedule Macy's weigh-in and bloodwork for next Tuesday (August 23). I had moved it to yesterday, and when we got there, it was very backed up due to a really sick baby having tests run by the doctor. We decided to reschedule. I will update you on her weight next Tuesday after our appointment.
Have a great week!

Wednesday, August 3, 2005 4:57 PM CDT

Did you think I had disappered? It has been a few weeks since the last update. Praise God- we have had a few uneventful weeks, and there has not been much to share.
Macy's growth hormones are going well. We have started giving them to her at night after she goes to sleep. It has been better because there is no anticipation for her, and she cries for a second and turns over asleep again. We are getting it down to a rhythm, and I am thankful that it had been a decently easy transition.
Macy is busy climbing and going everywhere. She fell going through the back door from the yard and got another bruise on her forehead. It flashes me back to Ansley when she was little and always looked like she had been in a war zone. Both of our girls are little monkeys climbing everywhere.
Macy goes in for her 21 month checkup next week. I will update you on her weight check at that time. It will be interesting to see if her weight or height has changed since her medication began. I can tell her feet have grown out of her sandals and church shoes. Also, she has been sleeping more (longer naps, later in the morning), and I always imagine her in there growing like crazy! One day, I will go in to get her out of bed and there will be arms and legs dangling out of the crib! ha ha We will continue to wait and see what God has in store for her little body.
"Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful."
Colossians 3:15
What a simple, yet commanding verse. Be peaceful and thankful- these are not easy for me, but always a good thing to keep reminding myself. Literally, God has brought Layton and I through each event in our lives, and what a diservice we do if we don't continue to know God is in control...big things and small things.
God bless you!

Monday, July 11, 2005 2:24 PM CDT

I hope you had a wonderful Fourth of July. Our weekend was filled with fireworks, parades, and family time. The girls had a great time although Macy was not a fan of the fireworks!
Last Wednesday, the four of us went to the growth hormone learning session. We practiced giving the shots on a practice doll and learned how to assemble the shots, administer them, and clean them up. Although we have been through many blood draws with Macy, it was harder than we expected to give her the shot ourselves. She didn't like it, but she recovered quickly. She gets a shot six nights a week, and it has been going pretty well. None of us enjoy it (including her), but we are thankful she has the opportunity to take these and help her grow faster.
As I sit here researching for the right Bible verse to share with you, I hear two kids (mine!) ready to get up from their rest time. So, I must be quick, but I thought this verse was fitting for our commitment with the growth hormones as well all the decisions each of us make:

"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and He will make your paths straight." Proverbs 3:5-6

May God bless you this week in all you do!

Sunday, July 10, 2005 10:45 PM CDT

Sorry for the delay in the updates. I will be updating on the afternoon of Monday, July 11th.
God bless you!

Wednesday, June 29, 2005 9:15 PM CDT

Our week has been filled with swimming lessons for Ansley. Macy has a great time watching the lessons as long as she is not getting in the pool!
We got the lab results back from Macy's bloodwork. Her kidney numbers (the acid in her blood) that we watch was 11 points below normal this time, so we have decided to keep her on the medicine (as planned by the doctor) until her second birthday. We will try to taker her off again at that time. While we wish Macy could come off of the medicine, we realize that now is not in God's timing.

Romans 8:18 "I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us."

Macy got her first official haircut at "Cool Cuts 4 Kids." She got to sit in a little race car and watch Barney, but she was still less than thrilled to be there. We did make it through the haircut, but there were many tears shed during the experience.
As far as Macy's growth hormones, we have been okayed through insurance to receive the specific hormone that we wanted her to get. I have been getting calls from our caseworker for approval, the drug company, the nursing company that comes to teach us how to use the drug, and the drug delivery company. Everyone is being very helpful, and we are setup to have our "learning" class next Wednesday. I am assuming that we will start the hormones from then on. I will let you know how that experience goes.
Thank you for your prayers for Macy's kidneys, heart, and every other situation. Thank you also for your prayers for my headaches. I have been to the doctor twice because of dizziness in addition to the headaches. My bloodwork came back normal this week. I am off to see what the eye doctor says later this week. Today (praise God!) this has been my first headache-free, pain medication-free, day in over 5 weeks. I am praying for many more of those.
God bless you!

Wednesday, June 22, 2005 8:48 AM CDT

Sometimes I just can't get it together to write a journal entry as soon as I want. We have been painting the kitchen so I have been busy with that (and not on the computer.)
Anyhow, Macy met with her nephrologist last week. Besides the fact that she screamed the first 5 minutes (her developed fear of ALL doctor's offices) Dr. Arnold felt like Macy looked good. She will be seeing him again mid-November around her second birthday. Three weeks before the appointment, I am supposed to completely pull her off her kidney medication. Then, one week before our scheduled appointment I will have her labs run at my pediatrician's office and take the results with us to the nehprologist. Dr. Arnold said it is a toss-up if she will be ready to come off of the medication. It is hopeful because of her normal blood labs last month, but only time will tell.
In the meantime, I have scheduled her an appointment at the pediatrician's office for this Friday. I wanted to have a weight check, have her labs run again to check her numbers, and have a check of her ear tubes. We should get the lab results back early next week, and I will update you with those. If you are praying for Macy, please pray for her labs to show a normal kidney function. As always, your prayers and concern are such a blessing to us.
On the normal side of things, we dared to take the girls to the Texas Ranger baseball game on Saturday night. We had planned to sit in the cheap seats since we assumed we would be doing anything but watching much of the game with them. However, the game was a sellout (we were told while waiting in the ticket line). There was a guy outside selling tickets. As we started to ask about his tickets, a security guard told us we couldn't buy tickets from another person at the game, so the guy gave them to us for free. (What a nice guy!) As we asked the security guard where our seats were, we were SHOCKED to find we were on the first row behind home plate! How undeserved were we? The girls, Layton, and I had the best time at that game. Macy had her "fifteen seconds" of fame. She was on TV with her head buried in a king size diet coke cup. And, Ansley got a foul ball. She even threw it back onto the field, and the guy on deck to bat threw it back to her. All in all, it was a great time, and we were thankful for the mild weather and the excitement our girls showed.
Layton and I celebrated our sixth anniversary on Sunday. We were talking about what a busy six years we have had- three houses, three states, two kids. Although it has been great, we were both hoping for a much more uneventful next six years! :)
I hope each of you are having a great week. I will journal next week after Macy's test results!
"This day is sacred to our Lord...for the joy of the Lord is your strength." Nehemiah 8:10

Tuesday, June 14, 2005 8:15 AM CDT

The nurse from my doctor's office called yesterday to tell me that my MRI was normal! Praise God! Actually, the doctor joked and told me, "there was nothing between my ears." Ha ha- I could have told him that! I do want to say thank you for your prayers on this matter. It was great to get a good bill of health in spite of the headaches. I guess I should go to the eye doctor to check out my vision.

Philippians 1:19 - "Yes, and I shall rejoice. For I know that through your prayers and the help of the Spirit of Jesus Christ this will turn out for my deliverance,"

We had an eventful weekend. The girls started running fever, and then Ansley couldn't keep any food down. I am not sure where they picked the bug up, but it kept us home for a couple of days. By Monday morning, everyone seemed to be getting better, eating, and playing.
Macy has an appointment with the nephrologist later this week. Like I have mentioned before, I am anxious to discuss her kidney function and continuing on Macy's medication. I will update following her appointment.
Have a wonderful week, and may God bless you!

Tuesday, June 7, 2005 8:39 PM CDT

(Added update at bottom of page- Wednesday 10pm)
We definitely have a walker on our hands, and we are loving it! Macy is into everything, and walking all over the place. Martha, Macy's physical therapist, is working with Macy to smooth out her steps and practice holding things while walking (this is an extra challenge in order to help walking become smoother.) Also, we are working on walking outside where it is uneven. At this time, we do not notice a limp or gait. As she is still a new walker, her steps are small and immature and she keeps her hands in the air. We will continue to work on those things for her to be a successful walker.
Last Friday, Macy had her checkup with the cardiologist. We always meet our cardiologist at our pediatrician's office when she spends a day out there. On May 2nd, Macy weighed in at 16 lbs. 6 ounces (18 - month checkup). One month later while visiting the cardiologist (June 3rd) Macy weighed 17 lbs. 7 ounces on that same scale! Layton and I were elated at the weight gain. This is in result to her appetite for grilled cheeses, granola bars, strawberries and cool whip, etc. Praise God for the small things in life that are big things to celebrate!!!!

"The LORD is gracious, and full of compassion; slow to anger, and of great mercy. The LORD is good to all: and his tender mercies are over all his works." (Psalm 145:8-9 KJV)

Our visit with the cardiologist went well. Macy's current heart function looked nice. The buildup of tissue underneath her aortic valve continues to grow slightly each time. This will need to be removed at a later time (likely to be early school age.) In addition, Macy's coarctation repair from after birth looked to be functining well. It will likely need to be ballooned open sometime during her teenage years. These are rough estimates, but as the parents, we always want some kind of timeline. While these surgeries will be a big deal, Dr. Clapp felt overall that Macy's heart was doing great at the time, and each of the future surgeries should have nice recoveries and not alter her abilities. As always, we continue to ask your prayers over the complete healing of Macy's heart and kidneys.
Other than that, things are calm around here. Ansley got a big girl bike with training wheels and Macy got a bike seat on Daddy's bike. They are really into riding around the neighborhood.
We visit the nephrologist in a couple of weeks to discuss Macy's kidney function. I am eager to get his thoughts on her continuation with the kidney medication (Macy's last blood numbers looked good for her kidneys!)
Also at this time, we are working on the (neverending!) insurance process for her growth hormones. As luck would have it, our insurance only covers one particular kind and this is not the one the doctor reccomends. So, I am attempting another appeals process to the insurance for the necessary growth hormones. I imagine my picture is posted all over the insurance headquarters letting people know "this woman may be calling!" Oh well, it never hurts to ask, especially nicely, right? Also, right now the insurance is saying this will count towards her lifetime maximum (augh!) which will pile up quickly as she is already halfway there. I will also attempt to appeal that too, and then I will leave it up to God. He has brought us this far, and there is no use worrying over it.
I am posting new pictures, and I will update you next week.
God bless you!
P.S. I debated putting this on here, but I know how God listens to prayer. I (Summer) will be having an M.R.I. on Friday afternoon because I have been having headaches each day for the past month. I will have to wait for my results until early next week. I ask that you pray for a healthy report from my M.R.I., and that my headaches will heal on their own. Thank you for your faithful prayer on our behalf!

Sunday, May 29, 2005 3:24 PM CDT

My journal entries are spread out this month. I have not had as much new information to share with you this month. (Praise the Lord- no news is good news!) In spite of enjoying our "boring" everyday life, Macy is doing great. Her walking has really picked up. I would now call her a "WALKER!" She is still falling all over the place, but she gets back up and keeps trying. There is still crawling in there, too, but overall she is walking anywhere she can. Her balance for standing has improved as well as bending down and standing back up on the floor without assistance. This goal of walking has been a long-attempted group effort. Her therapists, family, and friends have practiced over and over to help her gain this freedom. Ansley, her unofficial therapist, has been a great motiavtor for Macy. Even though Macy is older than the average new walker, she is still so small to be walking. People often think she is such a young walker because of her petite-ness.
Macy has also been a better eater the past couple of weeks. Are ya'll praying extra hard out there this month, or what? She has been eating grilled cheeses, pizza, rice, lima beans, and many other things she would never tolerate before. We still have a long way to go, but every little bit of progress is a gift.
Macy's verbal skills are our next area to target. Her therapist said it is not uncommon for children to focus on one area (like walking) and other learning areas are left behind (like verbal skills) until the first skill is mastered. While she is very verbal with sounds, inflection, and pointing, we are excited to see her potential for using words. Again, she has a great 24 hour a day, 7 days a week talking machine as an example- Ansley!
Colossians 3:23 "Whatever you do, work at it with all your heart, as working for the Lord, not for men,"
I know this verse holds such a deeper meaning for how we are to live our life as an example to others. But, I think it can even be a part of something as simple as walking for a baby. Each of us are given different jobs and responsibilities during our day. For a young child, walking is a huge job to learn that requires lots of work and bumps and bruises along the way. While we take walking for granted each day, this has been Macy's task each day. She has set her mind to it, and she is acheving it. God is so good to help each of us to do the best at our job each day - no matter how boring or exciting these tasks may be.
May God bless each of you this week. I will post a picture from my phone today (sorry if the picture is small), and I will put more on tomorrow (Monday) after the Memorial Day festivities.

Friday, May 13, 2005 10:18 PM CDT

Don't you love the weekends? We always look forward to them around here.
Last weekend, we spent time with Layton's family. There were five grandkids four years old and younger. Can you imagine the chaos? The kids played great together, and we had a good time.
While we were with the Dale's house, we drove up to Layton's uncle and aunt's house in Missouri on Saturday. We spent time with them and some of the wonderful people in their church congregation at the spring ladies retreat (Layton was not included- ha ha). They all made us feel so welcome, and we enjoyed our visit with them.
I was looking at Macy's calendar, and other than regular therapies each week, we have a pretty low-key month scheduled for her. Since her 18 month checkup, I have backed off on her milk amount (doctors orders), and her eating has been better. Coincidence? I hope not. It would be nice to think her appetite has picked up by cutting out a lot of the whole milk. Macy really has had a great week- smiling talking, eating, taking steps- normal baby things. Praise God for allowing her to feel so good.

Lamentations 3:22-24 "The steadfast love of the LORD never ceases, his mercies never come to an end; they are new every morning; great is thy faithfulness. "The LORD is my portion," says my soul, "therefore I will hope in him."

Her stepping ("walking") has evened off. She is still taking steps all day long, but she is content to hold our hands or the side of the furniture while walking. Her bablance is wonderful, and I believe she could walk completely on her own if she built up the confidence.
Looking ahead, we see the cardiologist and the nephrologist (kidney) in June. In the meantime, I have contacted the nephrologist's office regarding Macy's normal lab readings last week. The nurse was unsure exactly of Macy's situation, and I am waiting to hear back from the doctor early next week to see what our plan of action is for Macy's medication. I would like to gather all information he needs (additional labs, etc.) before we have an appointment with him in June.
The girls will spend time with their Popaw and Mimi Allison in the morning while we steal off to the Byron Nelson golf tournament for a couple of hours. Ansley is dreaming of promises to get in the pool and eat treats while she is there. Oh, to be three years old again.
I hope you are able to enjoy your weekend as well. God bless you this upcoming week!

Tuesday, May 3, 2005 9:20 PM CDT

I hope you have had a great weekend. We took Macy to the pediatrician for her 18 month checkup on Monday. She weighed in at 16 lbs. 9 oz. which was up a couple of ounces, and we were glad (and surprised) to see the weight gain. The visit overall went well, except that Macy has developed the "white coat symdrome." Anytime we enter a doctor's office (literally), she gets panicky and fidgety. She is always anticipating a blood draw or something frightening. And really, I can't blame her. So, she wasn't showing off her stepping skills or anything, but Dr. Levy (and the nurses) were so understanding as always. We had her blood drawn there. I was really anticipating some low results in her kidney function because we haven't raised her medicine dosages as she has grown. Also, sometimes she won't finish a drink that has her medicine in it, and she has been so thirsty lately. So, I have been curious to see the numbers on her kidney function. But, THANKS BE TO GOD, her blood acidic level (the number that is always low even with medication) was in the normal range this time. First time ever! I was so thrilled to see God working on this area of her life. I have been prepped to expect her on this kidney medication for a while. While this doesn't necessarily mean we will pull her off the medication now, it is a great step in the right direction. My pediatrician was faxing the results to our nephrologist so he could make a game plan on when to have more labs drawn, etc. In your prayers, I ask that you petition God to allow Macy's kidneys to function normally without this medication. What an answer to prayers it would be to remove her from this medication and take that area of worry off of our hearts!

Matthew 15:28 - "Then Jesus answered her, "O woman, great is your faith! Be it done for you as you desire." And her daughter was healed instantly." (How I wish for faith like this woman!)

Hebrews 4:16 - "Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need."

God is so good. Whether it be issues I think about often or others that I think will go on for a while, God surprises me and reminds me that He is above any planning I might have for my family.
I am sorry to be lacking my in my pictures. I will take a new one to load in the morning with my digital (it should be loaded by Wednesday mid-morning), and then I will have more new ones after the weekend!
God bless you!

Thursday, April 28, 2005 9:07 PM CDT

I hope you are having a great week. Our weather has been warm, and that puts us all in a good mood around here.
Macy goes for her 18 month checkup on Monday afternoon. I am anxious to see her weight and discuss her eating (or lack thereof) habits. Also, I am going to request bloodwork while we are there to check on her kidney function. We took her last Saturday to the hospital to have the labs run. Here is a basic rundown of the lovely experience we had there: (this is meant for a good laugh!)Go to the outpatient weekend lab- it is closed and they send us to the regular lab; the regular lab says we should register first at the hospital and sends us to the ER since it is the weekend; the ER says the regular weekday registration is open and we hike up there to reigster and fill out paperwork (Surely they have a previous copy of all this information?) then we head to the lab; the tech works the needle in, out, and around Macy's veins for while and Macy goes nuts; Ansley sings to Macy to attempt for a calmer atmosphere and then gives up and has a meltdown; Layton asks the technician to stop the unsuccessful attempts at the bloodwork; we go home without bloodwork. AUGH!
We will repeat the attempt at the doctor on Monday. I am praying for a successful line to be run into her arm the first time! The bloodwork should come back on Wednesday. I am also going to ask for a blood sugar test. I don't know if I have mentioned before that Macy could drink all day long. I have wondered if we should be concerned for diabetes (it is in my side of the family.) However, she only cries for a drink WHEN she sees a cup: bottle, sippy cup, straw, etc. At dinner, we all hide our cups. If she sees it, she will cry until she gets a drink. But when she gets a drink, she is done eating and will suck down the drink. The problem is, she will drink all day and then she isn't hungry. I want to test her blood sugar to see if it is normal. Although diabetes could be a concern, the situation could also be behavorial. A drink is comforting to her because it fills her up quickly and she can take it in easy. With food, it is not that enjoyable or easy for her. So, I think she often cries for a drink because it is a "comfort food" for her. I will keep you posted on those results.

Matthew 6:25 - "Therefore I tell you, do not be anxious about your life, what you shall eat or what you shall drink, nor about your body, what you shall put on. Is not life more than food, and the body more than clothing?"

3 John 1:2 - "Beloved, I pray that all may go well with you and that you may be in health; I know that it is well with your soul."

May God bless you this week!

Wednesday, April 20, 2005 2:27 PM CDT

Macy has had a better couple of days, and has seemed to snap out of her super fussy spell. She has slept through the night, and is playing/eating better during the day.
We went to the endocrinologist this morning. Macy weighed in at 16 1/2 pounds and was almost 27 inches long. Because she is so small (being a picky eater doesn't help), the doctor suggested we can begin the growth hormones if we are comfortable with that. The nurse demonstrated the different products that companies sell. Each company offers an identical hormone, but the injection tools are slightly different. I imagined drawing a syringe from a bottle, but in our high-tech world the products are much more "user-friendly." We are going to do some research and will probably file with our insurance and begin the procuess to qualify and have an adiministrator come to the house and set us up in the next month or two. I know it may sound like such chaos, but in reality I think I will become part of our life. It will be just something we do one time a day and then have a regular day. I never want to make it a big deal for Macy.
We also discussed the chromosome report from Children's Medical Center. It is crazy because in some ways, Layton and I can easily forget all of the diagnoses when we are home. Macy looks like any other kid, and she is into everything like any other busy toddler. It is always a little sobering to go to one of her doctor's and remember, "Oh yeah, we are facing these challenges from a medical standpoint." Since we have been blessed with good results over the past months, it is always a disheartening (even when we have prepared for it) to get any news that isn't in Macy's favor. As far as her chromosome results, Macy does have a mosaic form (a more mild form) of Turner's Syndrome. However, on the second X chromosome that she has (whereas a regular Turner's Syndrome case would be missing these extra X chromosomes) she is missing one of the "X" legs that would be in her benefit for height. Because of this, her height potential would be the same as a girl with regular Turner's Syndrome. I guess in some ways, I hoped to walk in there and the report show she has an extremely mild form. But in reality, we are blessed to have the growth hormones to help her height, and I am thankful that it doesn't indicate something more severe.
We spoke with Macy's endocrinologist about sharing Turner Syndrome with her. We want to always be open with her, and let her realize that she is strong-willed and full of potential. At the same time, we don't want other children around her to hear the term "syndrome" and use that to differentiate her as she gets older. The endocrinologist suggested that she (the endocrinologist) is often referred to as the "growth doctor", and that we can be open with Macy without necessarily focusing on the term "Turner Syndrome" or sharing that term with everyone around her. I imagine we will follow her lead as she gets older on how to share this information with her, her friends, and the people around her. In reality, aren't we all unique?

"For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them." Ephesians 2:10

"Why, even the hairs of your head are all numbered. Fear not; you are of more value than many sparrows." Luke 12:7

"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made;" Psalms 139:13

Macy is still taking a couple of steps each day on her own. Other than that, she is cruising around like crazy holding on to the furniture, and I really don't think the "official" walking is too far off. She is also getting more verbal. She has four words that she uses: ball, book, mama, and dada. She is pointing to everything and make her own "words". These are great signs to us that she understands everything has a name, and we are excited to watch her learn these names!
Have a blessed week, and we will update next week!

Thursday, April 14, 2005 3:55 PM CDT

We haven't had too much to report lately. Some weeks are full of progress and other weeks are a little stagnant. The past two weeks, Macy has been more fussy than usual. In general, Macy is particular about her likes and dislikes- she is not thrilled with being in the sun, swinging on the playground, the stroller, being away from Mom, etc. Since two weekends ago, she hasn't eaten well and has been more particular. Her crying has increased during the day. We went to the pediatrician last weekend. Her ears were a little red and her nose was runny, but she seemed fine other than that. I was hoping to see her come out of her "spell." She seems to play fine and have a good time when things are going her way, but she is fussier, isn't eating well, and waking up during the night again.
The hard part is the eating. She was doing so well, but now she is eating only mashed potatoes, yogurt, lots of baby food (we were almost off all baby food before), and milk. She doesn't seem to enjoy eating, so we have been getting creative with alfredo sauce, homemade mac and cheese, rice pilaf, etc. This is to no avail. I have emailed her feeding therapist so we can figure out when to go in again. When we are at the feeding clinic, her therapist is good with Macy. She makes feeding her look so easy. Then, we get home and Layton, Ansley, and I are practically standing on our heads during mealtimes.
Thanks for listening to me vent. She is precious in spite of her "particularness." It can just become tiring because I can't figure out what she needs and this is literally a 24 hours a day/ 7 days a week quest I am on. Enough complaining. People often remind me that our situation was supposed to be so much worse. And, I am thankful that Macy is cognitively well enough to know what she wants and have a spunky, fiesty personality.
Next Wednesday, we go back to the endocrinologist. We will talk more about Macy's chromosome report (the one I still do not have the results back on).
May God bless you this week.

Monday, March 28, 2005 3:35 PM CST

I hope all of you had a wonderful Easter. Although we had rain the whole weekend, it was still a great time. I wanted to share our biggest news of the weekend- MACY TOOK HER FIRST STEPS! We were celebrating my Popaw's (Summer's Dad) birthday, and Popaw and Mimi were practicing walking with Macy. She would go from one to the other holding on with one hand. After about 5 mintues, she was holding Popaw's hand and walking and then she let go and took about three steps before grabbing Mimi's hand. She did it one more time, and then of course she wouldn't do it after we grabbed the video camera. It was a wonderful moment that I can't even put into words. She was very proud of herself, and I think she will be walking on her own with about 4-6 weeks. Just in the past week, she seems like a busy toddler because she is into everything! Isn't that fun? (I bet I will love it for a week, and then be exhausted- ha ha)
2 Corinthians 9:15 - "Thanks be to God for his inexpressible gift!"
I put this verse in the context of Macy walking, but I know it holds so much more meaning than this. And, what a perfect time of year to be reminded of this verse. God's gift is His Son who died for us. I have heard the story of Christ dying for our sins my whole life. But, as Layton and I tried to explain it to Ansley (as it is easy to think bunnies and candy are the meaning of Easter), we were shocked to see her try to understand it and then tell it to her Memaw on the phone. Christ is someone she can't even see, and yet she believes in her own little way. What a renewal it is of our own faith to see Ansley (and all little children) starting to learn and understand such an amazing story!
(Enough preaching, right?)
Macy went to the Ear, Nose, and Throat doctor last week, and her ears looked good! On April 20th, she will go back to the endocrinologist. Until then, we will have a couple of physical/occupational therapies each week.
I hope you all have a warm, spring-like week.
I have uploaded new pictures! God bless you!

Tuesday, March 22, 2005 3:25 PM CST

We finally got the results from Ansley's colon and intestine biopsies (better late than never) on Monday. Both biopsies showed everything to look normal! Praise God! So, at this time, Ansley will continue taking fiber each morning, and we will go on with life. Thank you again for praying for our latest health issues.
Macy goes to the ear, nose, and throat doctor tomorrow for a check-up on her ear tubes. The week after her tube surgery, she was very cranky and had a virus. Since then, however, she has been doing better. Her verbal skills are progressing, and she has a couple of key words she uses at her disposal- "book" (minus the official "k" sound) anytime she sees a book or magazine, and "mama" on occasion when she wants me to hold her. All in all, she is being more verbal with all her sounds, and she has started pointing at things in her books. As for her mobility, she is crawling up on all fours now instead of just the combat crawl, she is standing alone, and she is on the verge of walking. If you hold her left hand or if she has her Fisher Price walker, she can go get herself around. This is an interesting change for Ansley because now Macy is getting into Ansley's things (dollhouse, etc) and wanting to be in Ansley's business all the time. It must be our first brushes with sibling rivalry, but we still think it is great to see them interact in such a normal, healthy sister relationship.
I will post some pictures today and then again after Easter. At that time, I will update you on the ear, nose, and throat appointment.
This next part doesn't really have much to do today with what I shared, but I really enjoyed these thoughts and hoped you might as well.
At church on Sunday, we spoke about the tenth commandement and coveting things that other's have. Layton and I really appreciated the sermon and the points that were shared. One thing we took from it was that the greatest way to combat coveting is to cultivate contentment.
1 Timothy 6: 6,8
"But godliness with contentment is great gain... if we have food and clothing, we will be content with that."
That verse doesn't promise us health, daily conveniences, or many things that I find myself wanting. How humbling to realize that we should be content with food and clothing. All of the other things like good health, jobs, etc. are extras- they are undeserved gifts from God.
We need to learn to "check our filters" because it is just like the ones in our house. If we don't change them on the inside, before long it will be evident on the outside. I was thinking that I should check my filters when being a parent or having a long week. It would do me and my family good if I would take a different, patient, more content approach to things. I hope these thought make sense to you.
God bless you all and please keep the true reason for Easter close to your heart.
PS I think I mentioned that we were awaiting results on Macy's chromosome reading from her endocrinologist. Well, we have been playing phone tag with the doctor and still do not have her opinion on it. We go to see her next month, but I am still hoping to speak with her on the phone before then. I will keep you posted if I learn anything on that issue.

Monday, March 14, 2005 1:07 PM CST

We have made it home from the hospital. All in all the morning wasn't too bad. Ansley was very hungry and thristy, but we tried to divert her attention. When they begin the anesthesia through a breathing mask, she was very scared. But, she drifted off to sleep, and about 40 minutes later she was done.
Dr. Baker told us that everything looked normal!!!! Praise God! There was irritiation at the bottom which could be where the blood comes from, but all of the organs looked fine. He took a biopsy on the intestine and colon and those results should return by the end of the week. All in all, we are overjoyed with the results. My heart is at such peace to know that everything looked great for Ansley. I can't even begin to share with you how much more I become thankful for good health each day. Before Macy, I think I hardly thought of the importance of good health, and now it is always near my mind.

3 John 1:2 - Beloved, I pray that all may go well with you and that you may be in health; I know that it is well with your soul

Thank you again for your prayers. They gave us peace through the morning. I will post some new pictures of this morning including Ansley's gooses-egg that she got from falling into the door playing chase last night (see more on this in yesterday's journal!)
I will update at the end of the week with the biopsy results and hopefully some results regarding Macy's new endocrinologist and her findings regarading Macy's Turner Syndrome chromosome reading from Children's Medical Center.

Sunday, March 13, 2005 9:35 PM CST

I wanted to ask again for your prayers tomorrow morning at 7am. We will take Ansley to the hospital at 6am, and she will get an IV before the anesthesia. That will be a difficult feat in itself. Then her procedure will begin between 7:00-7:30am. It will take about 30 minutes, and then the doctor will come out and show us the pictures and tell us what he sees. They will also take a biopsy of her colon and those results should return in a couple of days. I spoke with the anesthesiologist tonight, and he said she should begin to wake up pretty quickly after coming back to her recory room, and if all goes well, we will leave late morning.
Ansley has been on laxatives since yesterday and she has been unable to eat anything but clear liquids since lunch (can you imagine how fun our day has been?!?!), so we have promised her we will take her to eat if she is feeling up to it tomorrow at lunch. I will update the website when we get home early afternoon.
Ansley and my youngest sister, Kourtney, were playing chase tonight, and Ansley fell into the door. She has a purple goose-egg and cut over her eye. It was swollen and purple fast!!!! I called the ER and spoke to a nurse to make sure she wouldn't feel faint or anything since she can't eat. They said to not bring her in as long as she acted okay. She is doing better, and we are off to bed. I will post a picture of her with the goose-egg.
Please pray that Ansley does well with the anesthesia and that her results show she is healthy and fine. Also, please pray for my anxiety. I want to be strong in my faith, but sometimes I let the "what-ifs" and all of our mounting medical issues at home get the best of me.
On a happy note, Macy is standing. She lets go of the furniture here and there, and is standing for little bits at a time. It is so exciting to watch her, and we rejoice in the independence she is gaining.
Thank you all (I hope this never sounds redundant!) God bless you!

Monday, March 7, 2005 1:56 PM CST

I hope you are all well. My journal today is going to be about Ansley. (And maybe my weak spirit!) Ansley's gastrointestinal doctor has decided to do a colonoscopy on her to determine the location of the bleeding. She runs around here fine, eats great, lots of energy, etc. She occasionally complains of a stomach ache, but they never really slow her down. Those stomachaches started last July so I thought maybe she was anxious after our move to my parents and then again to our new house. Also, her friends changed since we weren't in the same town, and we were visiting new churches at the time. Ansley is very intuitive, and she was very aware of all the changes. However, as the stomachaches didn't go away, we went to the gastrointestional doctor. Her blood work and sonogram looked normal, but there showed blood in her instestine. That has gone on and off for a month of two, so now we are at the point to go in and figure out where the blood is coming from.
On a personal level, I am struggling greatly with this. In one way, I feel frustrated that we can't get a break to not have any medical issues in our family for a while.I long to go back to the days when Ansley was a baby and we just had occasional well-checkups. Now, all of these appointments rule our lives. Also, I am so sensitive with health issues after Macy's situation that I easily panic and feel overhwlemed. When the doctor says that the worst case is a long shot, it is hard to dismiss that because that is EXACTLY what we were told during our pregnancy with Macy and when she was born. Anyhow, I am aware that I am hypersensitive to my children's health these days, and I don't want to become someone who worries about everything. Then, I find it hard to pray for healing becuase I prayed that earnestly for Macy while I was pregnant. And the ending has been great, but it was not without plenty of suffering and awful, scary times in between.
Ansley has always been my healthy child that I didn't worry about, and I can't even bear the thought what I would do if she wasn't. My life stays so busy and overwhelmed just with Macy's bills, doctors, therapies, etc.
Okay, I am sorry to go on, and you may not even be understanding me. But, I am living with a lot of anxiety for this colonoscopy. Ansley is such a grown-up child, and when we did blood work she screamed for me to make it stop. It will be hard to give her an IV, give her anesthesia for the first time, and let her go. And, I am also anxious about what the doctor will come out and tell me. Will I feel better either way just to know since this has been haunting me? Or would I rather not know since ignorance is bliss.
I am sure you are thinking I have lost it. I am really not crazy or so I think :), and I have always thought I recovered emotionally well from Macy's situation, but I think I still have many sore spots that are not ready to be dealt with. And, I don't want to go there again.
I am asking for your prayers:
1. Ansley's procedure and anesthesia will go well
2. The doctors will find something that is easily dealt with or even better yet that God will take it away completely today
3. My anxiety as her mother- That I will not focus on the fifty million what-ifs, but I will take heart in the fact that she is acting like a normal kid.
In the past, (after Macy's situation) I have struggled if I should ask God to heal someone or if I should ask God to lead the doctors to find the problem and heal them. With Macy, I initially asked for healing, and God had a different plan. So, now I just pray to God and say, "God, do whatever you have to do to HEAL ANSLEY COMPLETELY." I guess that God doesn't need my directions on how He could go about it. He is above that. What I imagine He wants to hear is just that we ask! So, here I am asking God to heal Ansley, and I am asking that you pray the same.
The colonoscopy will be Monday morning. We start with medicines two days before. Then the day before we taper off food at lunch and eat only laxatives and clear liquids. That in itself will be a blast! So, we will have a crazy couple of days. Dr. Baker will be able to come out directly after the colonoscopy and tell us what he sees. The colon biopsy will take a couple of days to return information to us.
I will keep you updated during the process.
In the meantime, Macy is coming out of a virus, and so we are hoping she may start sleeping through the night finally. She did eat a cheesey bread stick at a pizza place last night which is a first!
Thank you always for being our friends. My heart already has peace knowing that you are praying for our daughters.

Sunday, February 27, 2005 9:46 PM CST

I am sorry for the long gap between my journals. I have lots of little things to update you on with Macy. This past week, we had her one-year review with all of her Early Childhood Intervention therapists. They each assessed Macy in the area they work with her in, and her delays each varied slightly behind her age group. This seems to be because one area can affect another (example: her right hand find motor skills are still a little slow which prevents her from being able to finish some tasks to judge areas like cognitive skills and others). All in all, her therapists were very encouraged by her success. They feel that she is on the cusp of walking, and her main areas to work on is coordination in her right hand. Overall, her mental ability is age appropriate and she is copying us on the phone, patting her baby, and make similar noises in reference to words we are teaching her (example: We say "book", she says "buh".)
I think I have mentioned before that Macy has reoccuring ear infections. For the past month, she has been fighting another one, and she has had an unsuccessful round with two different antibiotics. About ten days ago, we went to see an ear, nose, and throat physician. He recommended tubes for Macy's ears to help them drain better. When testing Macy's hearing, the doctor found a very slight (and temporary) hearing loss due to the constant fluid in her ears. Layton and I were very hopeful that the tubes in her ears would take away some of her fussiness due to discomfort, and help her hearing (and possibly speech) ability.
Last Friday morning at 6:ooam, we went to the hospital for Macy's ear surgery. The doctor and anesthesiologist wanted all kinds of information from me regarding Macy's health since she would be undergoing anesthesia. She had to take an antibiotic before surgery due to her previous heart surgery. Macy went back for tubes and came back to the recovery room about 20 minutes later. She was groggy coming out of anesthesia, but by 9am she was good to go. We went to play with some friends that morning, and she played and had fun. I could tell she had some lingering affects from the medicine because she did take a 30 minute nap on me when I got her out of the carseat and she NEVER takes a nap on me anymore. However, she had a day full of playing after that. She has been more fussy over the weekend, but we also discovered two new molars in her mouth. Who knows which one causes the fussiness. We will keep you posted on life with the tubes in her ears.
Macy has been doing a little better with her feeding. A little over a week ago, I put some rice and lima beans on her tray fully expecting her to toss them off as usual. However, she started eating them. We tried not to look too surprised and throw off her eating rhythym. Since then, she has been eating french fries, bread, honey nut cheerios, and other little things we can set on her tray. She even ate some of a peanut butter and jelly sandwich! She is a lot less likely to gag if she puts it in her mouth rather than us. However, all of these foods would have gagged her a couple of months ago, so we are thrilled for the progress.
That about wraps up our two weeks. We will follow up with the ear, nose, and throat doctor in about 2 1/2 weeks, and we are going to be having an assessment done by a nutritionist with Early Childhood Intervention.
I know it probably sounds monotonous as we thank you for your prayers, but they do continue to mean more to us than we can share with you. We appreciate your concern for Macy and our family. You have followed us through this journey, and we are forever grateful.
One other thing I want to share with you is that today is one year ago that Macy was CareFlited to Cook Children's Hospital with severe dehydration, and we came very close to losing her again. I am in awe of how far she has come this past year, and I am joyous that it is February 2005 and not February 2004! Thank God for continuing to watch over our family and yours as well.
Colossians 1:11 - "May you be strengthened with all power, according to his glorious might, for all endurance and patience with joy,"
I have one last prayer request for you. My family seems to have all the health issues these days. My Mom was having a flutter in her chest, and the doctor took her blood pressure. It was very high, and she was not too far from being in the stroke range. This really scared her (and all of us). She went home to take it easy and has started a mediciation that the doctor gave her, and her bp was down today. She has been feeling much better over the weekend. Please pray that her bp will stay down and that she will not have to continue on this medication long term.
Thank you, thank you, thank you for your continued support. May God bless your family this week!

Sunday, February 13, 2005 11:26 PM CST

Happy Valentine's Day to all of you! I will be quick because it is late. However, I wanted to update you and let you know that Layton and I arrived safely home from our trip. We really enjoyed our time with the people from Layton's company! Friday evening, the night before we flew out, I called to check on the girls. My Mom told me that my granddad had passed away that morning. I have mentioned over the past month that he has been fighting aggressive cancer. Our hearts ached to hear the news, yet we were glad God took his pain and constant suffering away from him. We were able to catch an earlier flight out on Saturday to come home and get the girls so my parents could help plan the funeral. This afternoon, we had a funeral here in town. We all shared our memories of him, and it was very special. He will be flown to Pensacola, Florida for a military burial on Tuesday. Please keep his wife, Jo, in your prayers. Thank you for the prayers you have said on his behalf.
This week, we will stay busy with Macy's therapies and a visit with the ear, nose, and throat doctor. We meet with him on Wednesday to discuss tubes for her ears. Layton and I are at peace with the tubes so that her ear infections will quit interfering with her eating and sleeping. I will update you when that surgery is going to be.
As for Ansley, we will repeat a test at the end of this week to see if she has blood in her intestine again. I ask again that you pray for a normal test result. (I am sure you tire of my prayer requests, but please know that we appreicate each and every one- and we are praying for you!)
Sorry to be short. I hope you all are having a great week. I will update in a couple of days!
May God bless you and your situation this week. Remember, His grace is sufficient!
"It is of the LORD'S mercies that we are not consumed, because his compassions fail not. They are new every morning: great is thy faithfulness."(Lamentations 3:22-23 KJV)

Monday, February 7, 2005 9:11 PM CST

Well we are off to a busy week. Ansley saw the Gastrointestinal doctor today because some of her tests were positive for blood. Poor Ansley, she had a rectal exam and that was anything but fun for her! The doctor wants to trest her with antibiotics first to see if everything clears up. If there is still concern after about a month, Ansley will have a colonoscopy to look for the problem area. I ask all of you to please pray that this antibiotic will heal her completely so that she may avoid further procedures, her tummy will quit hurting, and we can feel good that there is nothing of a bigger concern to worry about. These prayers truly change our lives, and we thank you.
Macy is a busy girl. We have had to put a gate up to block the stairs to our gameroom. She is relentlessly climbing them. The past week or two she has started to show some independence. I love it! She still wants me in the room, but she doesn't necessarily want to be held. She is moving all over the place, pulling up, and exploring. Praise God for her busy self! She is also trying to hold her own with Ansley these days. If Ansley takes a book or something from her, watch out for the tantrum. And if Ansley gets a sippy cup to drink from, then of course Macy has to have one, too. This temper may come to drive us crazy, but we love it now. It is just such a sign of her strong personality which I love.
Layton and I are leaving on a trip with his work this week. My parents are staying with the girls and they will have so much fun. As for me, the trip will be great, but I am a truly PHOBIC flier. I really can't even tell you how I feel about flying. In addition, I do feel a little anxious leaving the girls- Macy has never been left even overnight, and there is so much to remember with her for thickening bottles, medicines, etc. We will be on a cruise so it won't be the easiest to reach us either. I again (sorry to ask so much of you) ask for your prayers that I will not be anxious about leaving and the travel, that our flights and cruise will be safe, and that the girls will be safe, healthy, and happy while we are gone for a couple of days.
Sometimes, I probably stray off the path of what you come to this page to read. If that bothers you, I am sorry. But, you have honestly all changed our lives with prayer, and we have come to know you. So, when we are faced with challenges, it automatically gives me comfort knowing that you are there to pray for us.

Philippians 1:19 - "Yes, and I shall rejoice. For I know that through your prayers and the help of the Spirit of Jesus Christ this will turn out for my deliverance,"

James 5:16 - "Therefore confess your sins to one another, and pray for one another, that you may be healed. The prayer of a righteous man has great power in its effects."

That last verse always amazes me to think that one small prayer that comes out of an ordinary person like me has "great power" to it! I need to realize this and let my faith grow as I offer things up to God in prayer. That is definitely something for me to work on. I know many of you who are examples to me in your prayer life. Please always share with Layton and I your concerns so that we may pray for you, too.
God bless you, and I will write when we return from our trip!

Monday, January 31, 2005 11:04 PM CST

I don't have too much new to share with you since my last journal entry, but I added some new pictures and wanted to update you while I was here.
Macy seems to be getting over her ear infection. Layton and I have had a full night sleep or two (no waking up in the night with her), and you would think we had won the lottery! As for Macy's eating, she is coming around a little (slow and steady wins the race!). Layton is great with her and the food. I give in easy when she fights it (which is pretty much every meal), and I will offer a bottle. But, Layton has made a plan where MAcy will eat at least three jars of baby food a day, so we are on a schedule. You should see what fools we make of ourselves (even Ansley) as we dance, sing, high-five, etc. just to get Macy to laugh so we can slip a bite in her mouth. Her variety is increasing ever so slightly. She has eaten a couple of new baby foods and she tried a little hot dog today! (Shocker I know, but the therapist recommended tiny bits becuase they have a lot of flavor!) I walked by Macy's Bible class two Sundays ago, and it looked like she was in there eating goldfish with the other kids! I couldn't have been more proud!
I was studying in order to find the right verse to share with you regarding our needs being met by God (like Macy's eating), and then it hit me. Ansley learned a Bible verse at church last week that is so simple, but it encompasses all of our needs:

"God cares for you." 1 Peter 5:7

That pretty much sums it up. That is the reason why we don't have to worry about every little thing regarding Macy's eating, devleopment, etc. We know that God cares for our girls (and all of us for that matter), and He wants to best for all of us. So, we will do the best we can do, and then the rest up to God.
Have a great week!

Thursday, January 27, 2005 10:07 AM CST

Thank you for the prayers for my grandad. He has gone home with Hospice Care, and we all enjoy spending this time with him.
This week has been a busy week for Macy's schedule. We have already had two doctor appts. and four therapies. We saw the eye doctor this week, and he felt like Macy's eyes have improved dramactically from this time last year (she was making no eye contact at that time.) The doctor felt like her eye function was very age appropriate.
In addition to physical therapy, occupational therapy, and a visit fromour Early Childhood coordinator, we had a feeding therapy at the hospital. These therapies are with the same therapist who has done all of Macy's swallow studies in the past. This was the second of our feeding therapies, and it seemed more successful than the first. Although Macy seems unsure of trying new foods, she was more likely to continue with them with lots of praise and distraction (i.e. me dancing and singing and making a fool of myself to keep her mind off of the swallowing) Her gag seems to be mental so this distraction sometimes helps her while she eats a food she is unsure of. We are going to try some table foods like pasta and peas cut up into tiny bites. I am supposed to mix all the butter and cream I can into things for extra calories (can you imagine?!) She is also really into ice cream, and her Dad has been making her fruit smoothies. We are going to make a slow transition off of formula and onto Pediasure which is a milk supplement for children who don't get enough calories and fat. Can you say "expensive?" Oh well, it is worth it, and she seems to really like it.
I took Macy to the pediatrician yesterday because of her congestion and an ear infection that I was suspecting. Sure enough, her right ear has an infection. It is likely at her 15 month appt. in a couple of weeks that we will discuss tubes in her ears becuase she is right on the edge of too many ear infections in the past year.
Other than that, we are just being a boring family. I am going to have to repeat one of Ansley's tests becuase I have learned it was lost at the hospital (after about a million phone calls to locate it.)
I wish we could share with you in person Macy's physical progress. It is so reassuring to watch her as she is starting to climb stairs on her hands and knees, walk around the furniture, etc. We continue to be amazed with each of these basic skills.

Philippians 2:13 - "for God is at work in you, both to will and to work for his good pleasure."

This makes me think of Macy when she is working so hard to learn a new skill:
Colossians 3:23 - "Whatever your task, work heartily, as serving the Lord and not men,"

I hope that God is blessing you this week!

Monday, January 17, 2005 3:30 PM CST

I am sorry to not update at the end of the week like I mentioned. We got Ansley's blood tests back Friday morning, and then before I could update, my granddad (Mom's father) went into the hospital because his left arm was bothering him. The doctors found cancer in his lung and brain, and our family has been sideswiped with this diagnosis. We have spent the weekend at the hospital as a family. As you probably know if you have been in the situation with a loved one, there are so many emotions involved. Cancer is just such an ugly disease, and it is scary. We are not promised a carefree life, and it is so necessary to lean on each other during a difficult time. In spite of the situation, we have enjoyed being together and laughed a lot with all of the funny things my granddad says and thinking back at old memories.

James 5:15 - "And the prayer of faith shall save the sick, and the Lord shall raise him up; and if he have committed sins, they shall be forgiven him."

I ask that you be in prayer for my Mom and her family at this time. Thank you (as usual) for praying for us.
As for Ansley, her blood tests came back normal (THANK GOD!) We are still awaiting the last set of test which should be in within a week from today (or so I was told this morning!)
Macy is doing great. She is getting to be busy and moving all the time. She has learned the crawl up the stairs. We weighed her in last week and she had lost half an ounce from last month (15 lb. 4 1/2 oz.) I was a little bummed becuase her spitting up has tapered off so I thought she would be 16 lbs., but I guess her active new self is burning more calories. We will be scheuling a feeding therapy with a speech therapist at the hospital next week.
May God bless you with health and safety this week!

Monday, January 10, 2005 3:04 PM CST

Last Thursday morning isn't one you would describe as relaxing for Layton and me. Ansley's sonogram was scheduled for 8am so we had to be there at 7:30am. Ansley was less than thrilled to get the sonogram even though I told her she was a tummy model, and we were taking pictures of her tummy. Then, we went down the hall to the lab. Ansley was supposed to get blood work, and Macy was needing some work to test her thyroid and kidney function. So, why not poke everyone at once, right? Well, Macy, our little blood-giving pro, went first. They ran the line in her arm, and she gave everyone in the place her personal opinion, but she got it done on the first try. (This is rare for Macy- she usually blows a vein or two and we have to start over!) Then, Ansley went, and I think from now on she will have more sympathy for Macy when she gives blood. Excpet for some heel sticks with jaundice as a baby, this line run into her arm was all new. And, the whole hospital knew how she felt about it! It took four of us to contain her, and she jerked and yanked it out. So, we begin again, and my heart ached for her. She is asking "Why Mommy? Please stop doing this." Oh, I wonder if this is how hard it will be to do this when Macy is 3 and can talk. We finally finished the procedures, and we left the hospital wishing it was naptime for all of us.
Waiting over the weekend isn't fun for results. Layton is always so positive and calm, but it is always in the back of my head.
I got a call this morning and Ansley's sonogram was normal. THANK GOD! Macy's blood results came back and one of her three thryroid numbers was a little elevated (thyroid problems are more common with Turner Syndrome) so I will wait to see what the endocrinologist says about it. My pediatrician's nurse said that it is likely we will just watch it in the future. As for her kidneys, the bicarb (as always) was a little low, so we will continue on her medicine. All in all, this is about what I expected for her bloodwork.
Now we await Ansley's blood tests and some other tests they ran on her. I will continue to be patient and ask God to make her healthy and take my little anxiousness away!
Matthew 6:27 - "And which of you by being anxious can add one cubit to his span of life?"
Matthew 6:34 - "Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Let the day's own trouble be sufficient for the day."
I should have those results by sometime on Wednesday, and I will update you.
Thank you for your continued prayers! They are life-changing!
Check out the new pictures!
God bless you!

Sunday, January 2, 2005 5:36 PM CST

Happy New Year to everyone! I hope you ate your black-eyed peas on Saturday. We are full on New Year's resolutions around here.
I wanted to update you all since Macy saw the endocrinologist. We had a great first visit with Dr. Sher, and she was pleasant and informative. Besides our pediatrician and cardiologist, our endocrinologist will be a doctor that we have a long-term relationship with. It was nice to visit with a doctor who has many patients with Turner's Syndrome. She did not find any of the physical characteristics on Macy except her small size. Dr. Sher felt that we would probably begin Macy's growth hormones around her second birthday. Now that Macy isn't throwing up as much, Dr. Sher wanted to see what her weight does over the next couple of months. If she should catch up (which I imagine is unlikely since she is a bird-like eater) then we would push off the hormones a little longer. We will meet again with her in April and will begin to gather information on the hormone brands, distribution, etc. I will probably start talking with our insurance caseworker to get prepared for the beginning of the hormones. Dr. Sher will also watch Macy over time as she is at a higher risk for thyroid, diabetes, etc. She is running blood tests this week (routine, but nevertheless not easy for Macy!) to check these things initially.
I have a prayer request for you. I know I have probably used up my requests, but you all are so diligent in prayer. I am taking Ansley to the gastrointestinal doctor on Wednesday. Since July, she has had frequent stomachaches on almost a daily basis. She is easily distracted from them and they don't keep her from being a normal kid, but I still find my (oversensitive to health scares) self worrying about her. I also know that she has had a lot of change in the past year with Macy, our move, and a new school and that affects her. So, we are off to Macy's G.I. to understand more. Please pray that Ansley will be healthy and her stomachaches will disappear. Thank you so much for always being a listening ear!

Matthew 21:22 - And whatever you ask in prayer, you will receive, if you have faith."
Colossians 4:2 - Continue steadfastly in prayer, being watchful in it with thanksgiving;
James 5:15 - and the prayer of faith will save the sick man, and the Lord will raise him up;

I hope that you are looking forward to a new year. It is always nice to start over fresh, and we truly are thankful to be in a new year.

Acts 3:19 - Repent therefore, and turn again, that your sins may be blotted out, that times of refreshing may come from the presence of the Lord...
Philemon 1:20 - Refresh my heart in Christ.
I posted some new pictures from our digital camera. They aren't great but will have to do until I can get my Christmas ones later on this week. I will post the new ones and let you know how Ansley's appointment goes at the end of the week!
God bless you!

Monday, December 20, 2004 9:35 PM CST

I can imagine your week is as busy as ours as we all prepare for the holidays. Macy's ears have cleared up, but she has been a fussy thing the past two weeks. It has truly reminded me of the colic Ansley had as a baby. She has wanted to be held (by mom) ALL day long, and she has been waking up in the night every 2-3 hours! AUGH! So, we headed back to the pediatrician. She said that Macy is cutting all 4 of her molars at once, and that is probably causing the frustration for her (and us)! In addition, we REALLY need to be pulling back on the bottles and adding more food. She seems to wake up during the night and want to eat, but she doesn't eat a lot during the day. I have heard of babies having their days and nights mixed up, but I didn't know that could mean their eating habits, too! So, we are desperately trying to encourage her to eat baby food and hopefully table food in the near future. On the postive side, Macy's vomiting has decreased dramatically and we have even taken her off one of her "tummy medicines". She weighed 15 lbs. 5 ozs. at the doctor which is almost a pound in a month!!!!
Next week, on December 27th, we will see the endocrinologist for the first time. This is the doctor that will guide Macy through her growth hormones. I am curious to visit with her and learn about patients with Turner Syndrome (our other doctors do not have any patients with TS.) I will share all the information we get from the endocrinologist.
As this year closes, we continue to be thankful for another year of your support and prayer. Please call on us when our family can pray for you as you have done for us.
May God bless you this holiday season!

Friday, December 10, 2004 10:55 PM CST

We had an eventful week with Macy. Last weekend, we decided to start her on whole milk. We couldn't get a matching answer from all her doctors on when and how to start milk, so we just did it ourselves. We watched her closely since she had reacted to the milk-based formula as an infant and had to be put on soy formula (I also had a milk allergy as a baby.) But, Macy LOVED the milk. She was drinking it in a sippy cup, and she downed it. So, we contined the milk throughout the weekend. Then, on Sunday night, the fussiness came. She was waking up in the night, and as the week began, it was a flashback to the colic we had with Ansley. Macy wanted to be held ALL the time, she cried for a couple of hours that afternoon (and each afternoon for the next couple of days- AUGH!), and she sounded stuffy (which I had the past week and thought she might be catching). On Tuesday, I took her into the doctor because we were both at our wits end. Macy's pediatrician found an ear infection, and eye infection (from the drainage- yes, I promise we bathe her!), and a molar breaking through in her mouth. So, it was hard to determine if the fussiness was from the milk or the other 80 things going on with Macy. As a side note, we were so thankful as Macy was NOT throwing up with this round of sickness. She even weighted 15 pounds at the doctor!
We pulled Macy back off the milk to let her get better. In the meantime, she will continue on formula, but we are lowering her thickening (since she did well with the consistency of regular milk). Our pediatrician is also really wanting Macy to lower her bottle amount and up her food amount. Easier said than done, right? Well, we have added a new baby food flavor and graham crackers to the diet this week. And, eventually we will try the milk again when she is a little older.
Macy is starting to act better as of today. I think I can finally peel her off of me so she can play by herself on the floor again, and I can regain my left arm.
Also, yesterday was one year ago that we brought Macy home from the hospital. I was looking at a picture from last Christmas and Macy looks like the size of a pinecone in Layton's lap. She has grown and changed so much since then, and I look forward to noting her progress again next Christmas.
Thank you again for your continued prayers. How blessed we are to have all of you praying for us. I ask selfishly for prayers for me. Because of Macy's past, I think I am overly sensitive to health issues. I often find myself worrying a lot about Ansley or Layton even if they have just a small stomach ache. I will let my mind get the best of me until I start thinking it is a bigger deal than them just feeling under the weather. I know it isn't right to think that way, but Satan knows that I am weak in this area because of Macy's situation. I don't want to be consumed with worry in my life because it will get me nowhere, and it doesn't allow God to be in control. I am praying that God will help me give this concern over to Him and to take this worry out of my mind.

Matthew 6:27 - "And which of you by being anxious can add one cubit to his span of life?"
Matthew 6:34 - "Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Let the day's own trouble be sufficient for the day."
2 Corinthians 12:9 - "but he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." I will all the more gladly boast of my weaknesses, that the power of Christ may rest upon me."
I really love this last verse! I can't even begin to grasp that God's grace is sufficient for us all! What a powerful statement!

God bless you during this holiday season. I hope you have a wonderful Christmas- even if it is 60 degrees and people are mowing the lawn (like it is here in Texas!)
We have new pictures of the girls loaded.
God bless you!

Thursday, December 2, 2004 2:00 PM CST

My updates have been few and far between lately. I think of journaling each day, and then the time gets away from me.
I hope each of you had a great Thanksgiving. We traveled to my inlaw's house, and we had a great time. The girls did great on the trip, and Macy didn't throw up in either car ride! YEAH! She also didn't come home and immediately get sick which is a first after a road trip. It was nice to spend time with Layton's family.
I think I mentioned to you that Macy was pulling up. That is her new trick. She pulls up in bed, and then doesn't know how to get down. We will go in there, and she is "stuck" standing up. Her therapists are working on her learning how to get up to sitting by herself and sit down from standing.
Ironically enough, I heard Macy screaming as I sit here journaling. And sure enough, I go into her room and there is this tiny human standing in her crib and stuck. So much for a nap, I guess.
Anyhow...
Besides cutting molars, Macy seems to be feeling well these days. Our biggest concern for her at the time being continues to be her eating (or lack there of.) She is very disinterested in food. She is great with a bottle or sippy cup, and she likes baby squash and baby applesauce. But, literally, that is it. We are lucky if she takes a bite or two of yogurt. Everything else seems to make her gag, and then she refuses to eat it anymore. With her being more mobile, she is burning more calories, and yet she is not taking in any more calories. We will continue to get creative with foods and let God give her the desire and ability for food when He and she is ready.

Jeremiah 33:3 "Call to me and I will answer you, and will tell you great and hidden things which you have not known."

I am going to contact our Early Childhood Intervention specialist and make an appointment with the nutritionist (why not add another therapy?!?!?) Maybe he/she will be able to give us creative/calorie-filled meal options for Macy.
May God bless you this week!
We have new pictures loaded!

Thursday, November 18, 2004 2:42 PM CST

I was naive to think that life would calm down after the girls' birthday parties! This past week we have stayed busy as we have been making the quarterly rounds with Macy's doctors.
We had a feeding therapy at the hospital with the occupational therpaist who does Macy's swallow studies. This time, she watched Macy eat (and not eat!), and she saw Macy's gag reflex on different foods. She mentioned that many of her patients have this severe reflux problem, and she did not feel like this was necessarily a relation to Turner's Syndome. With Macy, she would give her a bite, and then praise her and play a musical video for a couple of seconds as a reward. She did this over and over to encourage and distract Macy while eating. And, it seemed to help as Macy gagged less. So, the next day, I set up a TV on the table and we tried the same thing. It went well for a couple of minutes, but then she got mad and wanted to get full faster (on a bottle, I guess!) It is a slow learning process, but Macy has graduated to eating some chunky applesauce, yogurt, and cheetos (yes, cheetos- they dissolve fast and have lots of flavor!) Macy's new diet is anything high in calories, full of fat and flavor. HOW FUN! We will continue with trying to introduce new foods to her slowly so that her diet can expand.
Also, over the last week, we have seen the developmental pediatrician, the regular pediatrician, and the neurologist. We received good reports from all as they observed Macy playing and interacting. Cognitively, Macy is about on schedule, and her motor development is a couple of months behind. Her biggest accomplishment is that she is pulling up! She has a little light-up play table, and one day last week she just pulled up on it, and then did it again and again. She continues to be a full-time work in progress, but we take joy in the smallest things that Macy accomplishes!
My nostalgia of last year is coming to an end. On the 10th, it was a year since Macy's surgery, and tomorrow (the 19th) is a year since Macy's stroke and return to ICU. I remember this day last year, and how hopeless and out of my mind I felt. As Thanksgiving approaches, I can only began to tell you how thankful I am this year. I don't care about turkey or desserts (can you believe it?!) or any of the other stuff. I am just undescribably happy to have all four of us at home and healthy.

Colossians 3:15,17 - "And let the peace of Christ rule in your hearts, to which indeed you were called in the one body. And be thankful...
And whatever you do, in word or deed, do everything in the name of the Lord Jesus, giving thanks to God the Father through him."

I hope all of you have wonderful Thanksgiving! I will update after wee see the nephrologist (kidney doctor) in about a week!

Sunday, November 7, 2004 10:43 PM CST

This past week and weekend has been a whirlwind, but I hated to go to bed without updating you on our weekend. I must start by saying that the best birthday gift wasn't at the birthday party. It was on Friday, Ansley's birthday, when MACY STARTED SITTING UP BY HERSELF!!!!!!! She has been trying hard to sit alone lately, and then it just kind of clicked on Friday. As you know, I have waited for this moment, and it finally arrived! We were thrilled to see her sitting up and playing with toys. Every couple of minutes she falls over and we set her back up again, but I can tell by her movements that she is learning to balance more and more. Praise God! I had asked that she be able to sit by one year, and God blessed with that as a reality. He continues to be good to our family!
As for our weekend, my mother-in-law came in on Thursday and was invaluable help with the girls so that we could get ready for the birthday party and finish up on our house. Friday, we went to the cardiologist. Macy's heart looked much the same as before. On the positive side, her heart mumur was almost not audible to her cardiologist. Our continued prayer requests on Macy's heart are these items: 1) for God to remove the small buildup under her aortic valve that causes a slight redirection of her blood flow (This will eventually require an open heart surgery to remove the progressing buildup and allow her blood to flow through. While the surgery itself is not one of the more major heart surgeries, it is still open heart which will require a new incision- one on her chest this time- and a more extensive recovery.), and 2) the scar tissue in her aortic arch (the area that was repaired at birth) to disappear and allow blood to flow through normally. Overall, Macy's heart is doing well and her doctor is pleased. However, the two areas I mentioned above are likely to need surgery in Macy's childhood. But, as we all have seen over the past year, God can change a medical diagnosis, and we are asking that He completely heal Macy's heart.
The girls' celebrated their first and third birthdays on Saturday. It was such excitement, and all of our family and friends were there for the girls. Tears filled my eyes as we sang Happy Birthday to Macy. It was a moment that I had waited for all year, and a moment that I wasn't sure that I would have this time last year. I just thank God for a year full of wonderful memories in addition to the chaos. I am praying for an uneventful next year full of health! :)

Romans 8:25 - "But if we hope for what we do not see, we wait for it with patience."

Hebrews 2:13 - And again, "I will put my trust in him." And again, "Here am I, and the children God has given me."

Psalms 28:6 - "Blessed be the LORD! for he has heard the voice of my supplications."

I want to share more with you, but I can barely keep my eyes open. Please look at the new pictures, and I will post more later in the week of all the festivities.
Thank you again for your kind words and encouragement for Macy's birthday. We are always blessed by you!

Monday, November 1, 2004 11:02 PM CST

As usual, I seem slow on my updates. I really do enjoy updating the web, it is just finding time to sit down and write my thoughts.
We have made the move to the new house (whoo hoo!), and we are unpacking and preparing for the girls' birthday party this weekend. I think I must be crazy having the party at the house and trying to make some Barbie cake that Ansley is begging for, but it is exciting at the same time!
Macy seems to be feeling better. We haven't had any of the extreme vomiting lately. We get one big one every couple of days if she gets too mad or eats the wrong texture, etc. I sometimes forget that Macy is actually about to turn one. She is doing one year old things like throwing tantrums. She has really gotten spoiled to being held, and we are working on that.
I have to be honest with you when I say that Macy has really been doing well with her sitting. Of course, when she is up and going regularly I will put a massive heading across the top of my journal entry! But until then, I have to get excited to see her interested in sitting, and doing it for small bits of time during the day when I am there with her. She has the desires of a one year old- she wants to move, get up and see things, grabs for our plates of food, etc. So, I see her frustration when she wants to do more than her body is able to at this point. This is why it makes me so happy to see her trying to sit. I think this will open up a whole world of being able to play independently.
We are off to see the cardiologist on Friday. I think we will do an echocardiagram which will give us an accurate update to her heart. Although I don't have any specific concerns and Macy seems to be doing great with her heart function, I always feel a little anxious to see the pictures and what is going on in that little body of hers.
Then, we have two birthdays- Ansley will be three on Friday and Macy will be one on Saturday. All week, it crosses my mind about this time last year. Can I tell you that I wouldn't go back to then for all of the money in the world? I am so thankful to be on this side of the story now. The nostalgia will continue throughout the next couple of weeks as I remember the first weeks of her life. I hope it doesn't bore you as I keep bringing up "this time last year." Do you ever do that about something in the past? It is just hard not to be reminded of it. And, maybe that is a good thing for us to do that when we have come through a trial because it reminds us that God brought us through it and that we should be thankful EVERYDAY for the normal little things. Each day, people are dealing with major trials. I just want to hug them and tell that God will put people (like you all have been for us) in their lives to help them get through it, and they will be better for it. When I think of it this way, my attitude changes to (try to) be more patient with people during the day (other drivers, clerks, etc.) because you just don't know what is going on in their lives!
I really didn't mean to get off onto that but it just came out. I have put a couple of Halloween pics on the page and one of Macy the day she was born. I will update this weekend after the cardiology appointment and the birthdays!
If I haven't said it before, thank you for your prayers over the past year. They have changed our life. I have tears in my eyes as I tell you that I didn't know we could make it through this, but God gave your friendship as a support to us. May God bless you for being prayerful and compassionate!

Monday, October 18, 2004 2:10 PM CDT

I hope everyone is getting cooler weather than we are here in Texas! I was spoiled to a day last week of 65 degrees, but it is 90 degrees here today! I am anxious for the long-sleeve weather!
Macy's ears are clearing up thanks to the antiobiotics. However, she has been throwing up since yesterday morning with each feeding. At church, we had to sit down towards the front because there wasn't any room left in the back. During the sermon, Macy barfed all over Layton's pants. It was a little embarrassing walking out with wet pants and a drenched baby. Everyone seems to be understanding, though! I orginally thought this was congestion related, but now I am wondering if she has a bug. Always a guessing game, I suppose. So, I am playing pharmacy administering 6 medicines between the two girls as they are fighting congestion and now this! I knew that kids kept it interesting, but I had no idea! :) Macy was up about 1 1/2 hour during the night, but I am fortunate that both girls are in good moods and playing well. I hope I don't bore you. I know the vomiting must sound like "same song, different verse." Believe me, it gets old here, too. But, what can you do? If you don't find a way to laugh these things off, they will drive you crazy! (Or at least they will drive me crazy!) :) I am praying that both girls will be 100% by our move and their birthday party.
I have gotten to know our pediatrician's office very well over the last year. Each person in there is so nice and thoughtful, and we are blessed by that office. I often talk to our pediatrician about myself as well as the girls. (Call it threapy, I guess?) I am often very honest about the fears and frustrations I have and that I don't know what to do with my feelings. She said that she has often thought I have Post Traumatic Stress Syndrome. It may sound silly, but it felt so good to hear that the feelings I have are explainable. I often think of the ramifications of last fall on Macy and Ansley, but I haven't ever really thought that I am still dealing with the after effects of it myself. The girls' doctor said that having to deal with the probably loss of your child day after day can reak havoc on a person mentally and emotionally. God truly works in mysterious ways. I go in to get a diagnosis for the girls, and I leave with a diagnosis for myself. But, I know God is watching over us, and He is healing us each and every day.

Luke 8:50 - "But Jesus on hearing this answered him, "Do not fear; only believe, and she shall be well."

James 5:16 - "Therefore confess your sins to one another, and pray for one another, that you may be healed. The prayer of a righteous man has great power in its effects."

3 John 1:2 - Beloved, I pray that all may go well with you and that you may be in health; I know that it is well with your soul.

Thank you as always for listening to me rattle on about our boring days. I am thankful to have all of you as friends and good listeners. May God bless you this week!

One more things, as we near Macy's one year birthday, I thought I would share some pictures of her when she was a newborn. These pictures definitely make me thankful to see how far she has come. God bless you!

Friday, October 8, 2004 7:45 PM CDT

The girls received their flu shots last weekend- PRAISE THE LORD! Actually, Macy only received the first half of hers (it must be done in halves the first time for a baby), and she will be unable to get the second half since the flu shots are now in low supply this year. However, my Doctor seems to feel good about Macy having even the half that she did. And, I am thrilled Ansley received one since the receivers of these shots have been restricted this week to kids under two, children/people with health problems, and elderly people. I would like to think this may help safeguard the girls from passing illnesses back and forth all winter long.
Macy's congestion has worsened and her cough sounds like she has been hanging out in a smokey bar. She threw up in her carseat yesterday, in her crib during the night, and again in the car today. We went to the pediatrician's office this afternoon and Macy is festering a double ear infection. YUCK! This is caused by the lingering congestion so we are beginning her antibiotics today. Otherwise, we were supposed to go to Arkansas and celebrate the 90th birthday of Layton's grandmother. It is disappointing not to get to go and see everyone. But, with Macy's vomiting in the car, extreme aversion to long car riding (which leads to crying and vomit), and the congestion/ear infection, we are unable to go. Those who have been around Macy have experienced her joy and her daily struggles. But, I know it is hard to explain our daily lifestyle with Macy to those who do not get to spend time with her. For some children, a simple cold is no reason to stop a road trip. That is how things went when Ansley was a baby. But, all our decisions are focused differently as we know that these small things can put Macy in the hospital or cause her to not eat and lose weight. I have people ask, "Do the doctors think she will get over this?" The answer is- it is likely as she ages, grows, and her immune system is able to mature. In the meantime, we enjoy her completely in spite of our family's schedule revolving around her schedule.

Romans 12:12 - Rejoice in your hope, be patient in tribulation, be constant in prayer.

Ecclesiastes 3:1 - For everything there is a season, and a time for every matter under heaven:

We are a couple of weeks out from our move. It is (at this time) in the plans for the week before the girls' birthday! AUGH! Life is busy, but we are blessed! I will keep you posted on Macy's ears and congestion. Have a blessed week.
CHECK OUT THE NEW PICTURES!

Thursday, September 30, 2004 3:35 PM CDT

I am going through the mail, and I will fine if I never see another medical bill or letter from my insurance explaining a bill! YUCK!
Okay, not to start off in a negative way. Those just aren't the kind of letters you are excited to see in your mailbox on a daily basis!
All is well here. Macy is working on getting over her congestion. The vomiting has slowed downa lot (praise God!), but she still sounds a little stopped up in her chest.
On Monday, Ansley went down for the count with the stomach flu. She was vomiting everywhere. I should have kept a tally on how many throw ups I would clean up the first couple of years as a mom. :) Anyhow, she seems to be on the road to recovery as well. We are off to get their flu shots this weekend!
Macy is really moving on her tummy. She looks like an inch worm when she scoots around on the floor. I wish I could video it and put it on the picture board for you to see. She also just seems more grown up lately. I think we are seeing the first of her temper tantrums. For example, I let her have a sip of Ansley's sippy cup. When I sat it down, she screamed and carried on. As soon as I gave her the cup again, she was sucking it down and happy as a lark. Now, Layton and I are suporters of dicsipline, and I don't want my girls throwing tamtrums to get what they want. But, I must tell you, I feel happy to see her tantrums- they are such a normal progression of growing up, and it gives me reassurance that God is showing me Macy's personality.
Nothing new on the sitting milestone. Basically, Macy just has no desire to sit. She doesn't enjoy that positioning at all which makes it difficult to practice. The things she loves to do (crawl and stand) are a lot more fun to practice with her. I always set little goals in my head for her. That may sound silly, but I think that is still the planner in me. I had hoped that she could sit by her birthday (and eat cake for that matter!) just to add to the celebration. But, I don't know if that is what God has in store. We are nearing the birthday and the sitting progression is still the same. As I have shared before, God is breaking me with patience. This continues to be an invaluable lesson for someone like me!
I sometimes struggle with seeing babies younger than Macy that are sitting and pulling up. Why is that? I mean, I am not in any sort of a competition. I just want those things for Macy. Well, time will tell, and we must be faithful that God will continue to amaze us.

2 Thessalonians 3:3 - But the Lord is faithful; He will strengthen you and guard you from evil.

Hebrews 10:23 - Let us hold fast the confession of our hope without wavering, for He who promised is faithful;

May God keep you all strong and faithful in your own trials as well. Have a wonderful week!
NEW PICTURES!

Sunday, September 19, 2004 9:31 PM CDT

I have been slow in writing again. My time slips away, and I don't get a chance to get on the computer.
The girls seem to be coming down with something. I suspect Ansley brought it home from Mother's Day Out. They have the runny noses, coughs, and yuckiness. And, as you can probably guess, that means throwing up for Macy. That seems to be her tell-tale sign that she is sick. So, we are back to washing the carseat (and crib sheets, her clothes, my clothes, etc.) on almost a daily basis. Oh well, this is life! I am just hoping that this will pass soon. I was getting ready to give Macy a weight check at the doctor, but I will wait until she is over this hump.
I can't remember if I have mentioned it before, but Macy is not a big fan of the car. She gets fidgety and cries and then guess what... With her losing her lunch in the car when she gets mad, this is keeping us grounded for a while. So, we don't venture off too far. This gets SO frustrating, but I TRY to be thankful because it could be much worse. Yet still, I hope that this too shall pass!
Macy's occupational therapist has now taken on Macy for feeding therapy. She will be working with us to help desensitize Macy's gag and slowly add in table foods. As usual, we are still working on the sitting. Macy's little legs stay so tight, and we do lots of stretching and movements to help fight against her tone. Although her sitting has not improved, she has made progress in her combat crawl. She pulls herself on her arms and tummy, and she slowly gets where she is going. We couldn't be any prouder to see her determination as she works hard to get moving!
As we near Macy's first birthday in a little over a month, I honestly can't believe that we have made it through the year. I am SO thankful to be rounding this corner of her first year, and I look forward to moving ahead and watching her progess. It is almost daily that I am driving down the street or making dinner and my mind wanders back. I think of things like sitting at the hospital or going back and forth from Ansley to the hospital to home for a new set of clothes. I think of not knowing everyday if we would have Macy the next morning. I don't know if all of these thoughts will ever leave my memory. In one way, they are such hard thoughts. But, in another aspect, I think God keeps them close to my mind so that I always stay in check when things seem to get tough now. Because everyday little things that feel like a burden are not a big deal when God throws those old memories in my path. Suddenly, I feel thankful to be dealing with these things even though they can be frustrating. Doesn't God seem to use our old experiences to teach us over and over? It seems like everyone has had major life events that God uses to teach them lessons throughout life. It isn't always fun, but this is part of growing and maturing, I guess.
I will update you in at the end of the week on Macy's health and her weight if we are able to check it. Then, she goes in a couple of weeks to get a flu shot. We all must have one since we are with her.
There are new pictures of the girls on the picture page. I hope you all have a blessed week.
God bless you!

Wednesday, September 8, 2004 3:55 PM CDT

I wanted to share that Macy has had a better week with the throwing up. I was about to send Macy to Vomit Anonymous, but she has been vomit-free for a couple of days. :) We had a couple over the weekend - they seem more frequent when we are on the go and busy. However, this week we have been at home and so life has been calmer for her. Thank you God for the medicines!
Layton's parents came to visit us this past weekend, and we had a great time with them. It is always nice to hear their progress report on Macy. Since we see her everyday, we do not always notice the little improvements. But, the Dale's have been on this journey with us since day one, and they share with us all the new developments they see with Macy. You can thank my mother-in-law for the pictures we have posted- she took 160 pictures of the girls in two days!!!
Macy was assesed by a physical therapist through the Early Childhood Intervention program last Friday. She noted the mildly-high tone in Macy's legs, and agreed that this is making it more difficult for Macy to sit. But, she felt overall confident that Macy would eventually learn to compensate for this tone and have the ability to sit. And, God brought a blessing with the physical therapist. It is called the Bumbo Seat (www.bumboseat.com). You will see a picture of it on the picture page. This chair is portable and allows Macy to sit alone for playtime, eating, and at restaurants. This has opened a whole new door for our family. Macy loves being in the chair, and it has allowed my hip a break during the day, and we are not wrestling a busy baby in our arms when we go to eat. Plus, I am so thrilled that she is able to sit up and play. It has really been such a blessing.
We are seeing a speech therapist tomorrow so that she can assess Macy's feeding and hypersenstive gag. At this point, we are having 8 therapy sessions a month, and speech will add to this load. Since this doesn't even include doctor's apointments, you can imagine the business around here.
Even though life is busy, I am learning that I am a 24 hour example to the girls. Ansley is a little sponge, and she copies everything we say and do- from how I hold a book to the words and phrases I say. This is a constant lesson for me to choose my words wisely and try to be encouraing instead of judgemental in my words and thoughts. And, wow, this is a BIG lesson for me!

"Let the words of my mouth, and the meditation of my heart, be acceptable in thy sight, O LORD, my strength, and my redeemer. (Psalm 19:14 KJV)"

And, it won't be long before Macy will be talking and copying us, too, Lord willing! As far as normal baby things, Macy is cutting two more teeth on the top of her mouth. This past week, Layton and I have noticed some maturity in her actions, attitudes, and desires. It is very reassuring to see her progressing- no matter what pace we go. It is frustrating when she has a setback like the vomiting because it is a constant physical battle as well as the fact that she doesn't progress developmentally at that time. (Just like when we are sick, we don't perform at our best, I guess.) So, this week has been a gift to see her happy, trying each day to be mobile, and gaining weight! I will take her for a weight check within the week, and I will share the results with you.
We got an appointment with the endocrinologist (after I filled out an amazing out of paperwork and family history.) She will see Macy on December 27th (her first opening!), and we will discuss Macy's growth and possible need for growth hormones at that time.
The weather has seemed like it is giving a glimpe of fall this week, and I always feel happy with the change of seasons. I hope you enjoy your week, and may we all see God's beauty in the little things!

Monday, August 30, 2004 10:17 PM CDT

Well, we are on day four of the medicines for Macy's vomiting. And, I think they are helping a little, so we are going to continue on with the both of them. For the past couple of days, her vomiting has gone from about 4 times a day to 1-2 times a day. And, each time she does it, there seems to be an explanation- riding in the car right after eating, switching to a different food or texture during a meal, waiting to long to put her down for a nap. I honestly find that when I put my WHOLE focus on her (i.e. Give her medicine right on time, wait the full thirty minutes, feed her a meal, and then keep her upright and playing without getting too wound up...) she seems to keep her food down. This is limiting us to not driving very far in the car, etc., but it is obviously more important to get Macy gaining weight. She is just showing us her limits on what she can tolerate, and we have to plan around that. I will do anything so that she will not have to get a surgically implanted feeding tube!
In the meantime, I am inquiring about getting her speech therapy through our Early Childhood Intervention group. A friend suggested it, and I am hoping they can work with her swallowing, desensitizing her gag reflex, and so forth. I am also awaiting a call from the endocrinologist so that we can meet with her. I am anxious to get information from her on Turner's Syndrome and her growth hormones.
In spite of the feeding chaos and medications, we are all well. Macy is a fun and happy baby, and we always experience such joy with both of the girls. God is so good, and He seems to continue pouring out His blessings. He blesses us with each of your encouraging words and prayers. You are all a part of Macy lives, and she is forever blessed by you.
"...for we know that as you share in our sufferings, you will also share in our comfort." 2 Corinthians 1:7

Please check out Macy's 9 month pictures. Just to clarify for those of you waiting for the miracle of Macy sitting alone!!!, she had a little assitance from me behind the curtain in these pictures. I promise I will be writing it first and foremost on this page when she is sitting up!
God bless you all this week.

Thursday, August 26, 2004 10:36 PM CDT

I wanted to have an update ready for Friday morning, but I know how crazy our mornings are getting the girls up and fed. So, I thought I would update tonight.
We saw the gastrointestinal doctor this morning. He felt like Macy's vomiting was a result of being constantly sick all summer. He has had other patients (those of which have not even had a crazy background like Macy) whose stomach gets out of whack after many rounds of viruses. Basically, Dr. Baker felt like Macy's stomach was most likely contracting at the wrong time and not emptying correctly. This should heal over time if she stays well. But, he did say it can take weeks or even months. (I guess she and I will start wearing vinyl clothing!!!)In the meantime, we now have Macy on two different medicines. One is to help her stomach empty faster after eating (3x a day- 20 minutes before eating.) The other is to help the acid in her stomach to aid in her reflux (2x a day- 20 to 30 minutes before feeding.) The reflux medicine can take a little bit to kick in, but the stomach emptying drug should take effect pretty quickly. However, it can have an adverse side effect of jerky, uncontrolled movements. I was glad the Dr. mentioned that beforehand, or I would have flipped out if Macy began doing that. So far, we have had no jerky movements, but the drug has not been proving itself today either. We had four vomits yesterday, and three today. We are to call the Dr. on Monday. If this medicine is not working, we will take her off of it. Please be praying for Macy's eating ability. She has lost about 5 ounces. With the throwing up, it will be hard to gain any weight, and she cannot afford to lose any weight.
A year ago today (Friday) was the day we had our high-level ultrasound and discovered Macy's swelling brain ventricles and her heart problem. That day was such a blur, and I cannot even describe the feelings we had during those multiple ultrasounds. I can honestly say that I wouldn't go back to that day for anything. This has been a hard, life-changing year. We are different people, and we will never be the same again. God is constantly changing us and preparing us for the next step. Our past year has been full of many prayers- all different kinds. We have prayed for healing, for anxiousness, for a miracle, for God's will, and then there were times we didn't even know what to say in our prayers. But, God is still in control, and He will continue to lead us from here.
Thank God that He continues to work on us instead of leaving us where we are. Even Ansley has learned many things and is a compassionate sister. The other day, I walked into my room. Ansley had my sewing tape measure. It was draped on her neck and she had the other end on Macy's chest. She told me she was "listening" to Macy's heart. I could only smile as I thought of what a good big sister she had become.
You all have been such support to us over this past year. Your words, thoughts, and prayers have kept us going. I will update early next week to let you know how the medicines are working/not working on Macy. I should have some new pictures then.
God bless you!

Monday, August 23, 2004 9:32 PM CDT

Let me say thank you to each one of you have shared encouraing words. You have no idea how much you lift our spirits. I have felt better this week- it must be an answer to prayers.
Have you ever seen a movie where you think you have the ending figured out and then there is a huge twist? And, then you think again that you know what is coming, but there is again another twist? This is how it is trying to get a grasp on Macy's feeding habits. I shared with you a couple of weeks ago how her swallow study indicated that she was ingesting some food into her lungs. That could be a possibility as to why she had been so sick. I left that swallow study thinking, "Duh, how have I not known that since I know her better than anyone?"
Well, since we have drastically started thickening her bottles and baby foods, she is throwing up more than ever. I can't even count on one hand the amount of times she has "lost it" on her and I in a restaurant in the past couple of weeks. This makes me concerned because I know each time she throws up that she ingests some into the lungs. Also, these bottles include her kidney medicine.
Macy is considered a "hypersensitive gagger." That means that she has a high gag that kicks in when she cries too much, eats too much, or tasted a funny texture. As I have been trying to introduce foods such as mashed potatoes, grits, and pudding, she will immediately gag and "lose" the lunch she has already eaten.
We went for a weight check at the pediatrician's office today, and she had lost some weight. I was afraid of that. My pediatrician is not necessarily convinced that all of her sickness was due to feeding. So, the pediatrician and I decided that I would go halfway on the thickenings and see how she does. From my history with Macy, I am convinced that her stomach is slow to empty. When she eats too fast, it piles up in there and the food doesn't have time to move through. Then, as we she drinks more of the bottle or eats the baby food she can't keep it down. And with the thicker bottles, I imagine it takes even longer to work through her tummy. So, we are going to try and have breaks between her feedings, and try some different sitting "propping" positioning to hopefully keep her food down. I just really want to see her gaining weight. She is a little thing to begin with, and we work so hard with her feedings to help her gain a good amount of weight.
Crazy enough, Macy knows no different. She thinks life is great, and she is so busy. She is trying to crawl "combat style" on her arms just a little bit. I hope the crawling and sitting "click" for her in a couple of weeks. We may possibly add some physical therapy to her schedule, although I only allow one procedure a day for her. I don't want her entire day (or Ansley's for that matter) revolving around therapy and doctor visits.
A good friend emailed me and said that Macy is like a gift that you can't open all at once. You can upwrap a corner here and there to peek at the gift, but it will take a while to fully open the gift. And peeking inside makes you want to see more, but you have to be patient. She, of course, said it so much more eloquent than I did. But, I really thought about that, and aren't all of our kids like that? Some just take longer to "open" than others, and I want to open up Macy now and see her entirely! I read this statement recently,
TODAY
God lent us a soul
TOMORROW
We must return it
PREPARED
For eternity.
"Accompanying the blessing of children is the responsbility to realize that they actually belong to God, and we are just entrusted with their temporary care. May God help us prepare them for eternity." (From the Church and Family Magazine, Summer 2004)
No matter what situation our children are in, this is our most important job. So, it will do me no good to compare Macy to this baby or that baby, but I should spend my thoughts on preparing our girls for heaven.

Okay, enough preaching! We are off to the gastrointestional doctor on Thursday to discuss the feeding issues. I will email Friday to let you know how that visit goes.
Thank you again for your constant friendship and encouraging words. God bless you!

Monday, August 9, 2004 2:48 PM CDT

Writing on this website has become so normal for me that I often find myself thinking about what I will say during the week or after a doctor's appointment. That probably sounds silly, but sharing with you is like free counseling! :)
Today, however, I really don't know what to write. We haven't had a super eventful week. At the end of last week, we had two doctor's appointments that left me feeling a little down. We had Macy's nine month checkup, and her pediatrician what so very pleased to see Macy's progression and weight gain- 13lbs. 9 1/2oz. However, Dr. Levy did notice that Macy's leg tone seemed tighter to her. She did note that it could just be that particular day for Macy, but it did leave her considering that the tight tone is creating the challenge of sitting alone for Macy. Also, the weakness in her right arm has become more apparent. Now, this is nothing super noticeable to everyone elseas she uses this hand. But, as we expect more from her with crawling and weight bearing activities, it is more easily noticeable that she heavily relies on her left hand. We were told that Macy could be diagnosed with a mild case of Cerebral Palsy (CP). Now, I have to tell myself that this term doesn't change how far she has come. We have heard this term as a possibility from the start, and it can be as minor as a weak arm or small limp. By twelve months we will have a good feel on how delayed this may make her. If it continues to delay her, we will go to Scottish Rite Childrens Hospital in Dallas for physical therapy. In the end, her prognosis is as it has always been- that she will likely walk and do all of those things. So, I don't want to be selfish and feel sad because it could be so much worse. But, the term CP can be so frightening, and I start to see the realities of the stroke Macy endured.
Then, last Friday, we had another swallow study to check Macy's eating ability. I was hoping that Macy's thickening would be cut back drastically as we near her birthday. Instead, it was noticed that the thinner liquids and foods are aspirating into her lungs quite frequently. This is not any worse than before and is still expected to get better over time, but it did mean that we are going back up on her thickening in her bottles and I am now thickening her baby foods, too. Because of all of the extra cereal to thicken, we have to give her juice so she will not get a tummy ache. But, it too has to be thickened with other agents like applesauce. Our occupational therapist said this is likely why she has been sick over the past two months. As we began to make her liquids thinner in the early summer, it does coincide with the beginning of all the viruses (the aspirating can cause congestion and pneumonia as it stays in the lungs). I felt so dumb when we realized this. How had I not seen that coming? Anyhow, I have had a range of emotions after this. I mean, sometimes I feel down because I thought that things would be less copmlicated as we completed the first year. And, now I feel like we are just adding more to our plate. But, then I feel huge guilt to be jealous of "normal" families because it could be SO MUCH WORSE. I have already been down a path like that, and we are so very blessed to be in our current situation. Macy's life has been so much more than we had been told to ever expect. And, God has blessed us with true joy by having Macy. So, why do I feel this guilt sometimes when I just want to be "normal?"
Today, Macy had her labs drawn at the hospital to check on her kidney function. It was a tough blood draw. They tried a couple of times, but to no avail. And, as she gets older, it gets harder. It took four of us to help the process get done. Layton and Ansley waited in the waiting room, and I also feel guilt for dragging Ansley along to all of this over the past year. She seems to be a good sport, and she has such compassion for others. I guess it is just like a mother to want to shelter her children from all that is painful and hurtful in the world.
I am sorry for my venting today. I know in my heart how blessed we are. As I have been introduced to other Caringbridge websites, I realize how good God has been to us. I just always want to be aware of that and not let satan encourage me to compare Macy with the other babies around us.

1 Peter 1:6 "In this you rejoice, though now for a little while you may have to suffer various trials, so that the genuineness of your faith, more precious than gold which though perishable is tested by fire, may redound to praise and glory and honor at the revelation of Jesus Christ. Without having seen him you love him; though you do not now see him you believe in him and rejoice with unutterable and exalted joy."

Philippians 4:6 "Have no anxiety about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God."

Romans 12:12 - "Rejoice in your hope, be patient in tribulation, be constant in prayer."

I hope you all have a wonderful week. Thank you for continued prayers of strength. Please stay in touch with us as we like to hear how you and your families are doing!
Please check out the new pictures!

Wednesday, July 28, 2004 10:28 PM CDT

We have had a week full of doctor appointments, and I thought I would share our updates.
Last week, we went to the nephrologist for a check on Macy's kidneys. The doctor scheduled a sonogram for her kidneys that will take place in November. At this time, he has decided to leave Macy on her kidney medicine until she grows and her kidneys have time to mature. The doctor told me that some kids stay on the medicine their whole life, but he thinks (and I pray) that Macy will come off of it within 2 years or so.
On Monday, we visited the developmental pediatrician's office. At the appointment, the nurse practitioner assesed Macy in many areas to place her on a developmental age level. Except for the lack of sitting alone, Macy is functioning around a 7-8 month old level. This is very encouraging. As of last weekend, she started to say the sounds "babababa" and "mamamama!" The doctor did mention that her right arm is definitely weaker than her left. We are really stretching that arm and trying to give her weight bearing activities to build it's strength. This makes sense that her right arm is weaker because of the location of her stroke.
On Tuesday, I noticed Macy's congestion was STILL not gone (what is this- 6 weeks now?) and she was spitting up more. Now, I have noticed that Macy easily spits up (not just little baby spitup, but a large amount)- if she cries too hard, eats too much, plays too soon after eating. So, we try to watch these things. But, the past couple of days, Macy was not holding a lot of her meals down. So,we loaded up and headed to our pediatrician's office. It is embarrassing how well we know every person in that office these days. Anyhow, Dr. Levy said Macy had a virus (what are the odds?) and the congestion that has lingered isn't helping the situation. Of course, I am feeling a little terrible because we put Macy in the nursery at church on Sunday for the first time. She is just getting to an age where she babbles and is too active to be in church. Since there were only two other kids in the nursery on Sunday, we thought we would give it a try. At this time, Dr. Levy and I have agreed that we will steer clear of the nursery until Macy's immune system develops more. I find myself wondering how I will ever be able to let her go to the nursery, Mother's Day Out, etc. with the way she catches things. I guess that will be a prayer item when the time comes.
I am sorry to bore you with this all, but I wanted to keep you updated. If Macy is on your prayer list, please pray for her immune system. Now, I know that life could be so much worse. We have definitely been there. So, I am thankful that everyday, normal baby sicknesses are all we are dealing with for Macy's health. But, it is still trying for her to be sick all of the time lately. It makes feeding, weight gaining, etc. a lot harder.
On the very positive side, Macy is working on her third tooth. She has the bottom two front teeth and is cutting a top front teeth. She seems like such a big girl with the teeth when in my mind she still seems like such a little baby.
I know I have shared this before, but our most favorite moments are watching the girls together. Do you feel this way with your kids too? Macy loves to roll on the floor with Ansley. Ansley will roll on top of her and kiss her and be up in her face. And, the whole time Macy is giggling and literally staring at Ansley. She thinks Ansley is the greatest. When we go to the doctor, Ansley holds her hand and sings "Your Are My Sunshine" or "Jesus Loves Me" to Macy when she cries. And, it truly gets Macy to stop crying. God has blessed us with Ansley to be the perfect, compassionate big sister for Macy.

Matthew 18:3 - and said, "Truly, I say to you, unless you turn and become like children, you will never enter the kingdom of heaven.

Matthew 19:14 - but Jesus said, "Let the children come to me, and do not hinder them; for to such belongs the kingdom of heaven."

Ephesians 5:1 - Therefore be imitators of God, as beloved children.

I love these verses as my girls constantly remind me of their innocence, their trust, and their love for others. God calls us to be like that, and it is a lesson for me to pattern myself in that same manner. And as a parent, I could not agree with this verse any more:

3 John 1:4 - No greater joy can I have than this, to hear that my children follow the truth.

What a job we have to do! We are in charge of teaching them about Christ. I still have so much learning to do myself, but I imagine that God will be teaching Layton, the girls, and me everyday of our lives.

Again, I am sorry to ramble on, but I always want to share with you what is on my heart. And, we always love to read in the guestbook what is on your heart. Each entry is read and saved for Macy in a book.
We will be seeing Macy's cardiologist in a couple of days for a check on her heart. I don't really feel anxious for these appointments anymore. When I was pregnant, I could almost throw up as we went to get a sonogram on her heart. I remember when the surgeon told us (before her birth) that she would have to see a cardiologist once a year for her lifetime. I thought what a commitment that would be for her and us to make. Ha! Little did I know where God would bring us. A once a year appointment now soungs like nothing! Anyhow, in spite of feeling calm for these appointments, I ask for prayers that God will be working miracles on Macy's heart like he is her mind and body.
I will update you after that appointment. Please know that we pray for you and thank God that you are a part of our lives!

Wednesday, July 21, 2004 8:25 AM CDT

Well, the sickness of the week is "walking pneumonia!" I took Macy into the doctor last week because she just didn't seem totally better from the double ear infections. Her pediatrician listened to her and said she had walking pneumonia and her ears were not completely cleared up yet! So, Macy started on an antibiotic. She seems to be doing better, but not 100% yet. (By the way "walking pneumonia is NOT contagious.) In spite of the congestion, she is being her busy little self.
Macy is still not sitting up yet. She is definitely working on it, and her doctors feel that she will do it. I am setting her birthday as our goal. But, because of the "no sitting" I see a gap between her and her age group. Little babies around us that are her age are sitting and crawling. I try to not think about it and just be so thankful for where she is at. But, being little doesn't stop her. When she is on her tummy, she is pushing up on her toes. I remember Ansley doing that before she crawled. I believe Macy will do all of these things in her own time.
As far as Macy's "own time," I was naive in my pregnancy to think we would know all there is to know about her once she was born. I just kept telling myself that the wondering would be over when she got here and we knew about the problems she faced. But, I now see a glimpse that Macy was God's "contract" with me to forever be waiting to see what He had around the corner. Gone are the days of figuring it all out. Now, I know that God will reveal Macy and her abilities to us one by one. Over the years, we will be blessed to see what He allows her to do. And, worrying about it won't make us figure it all out any faster. This is truly the first time in my life that I have so clearly known that I can't do it myself. What a lesson for me. I needed that.
Romans 8:25 "But if we hope for what we do not see, we wait for it with patience."
Jude 1:21 "...keep yourselves in the love of God; wait for the mercy of our Lord Jesus Christ unto eternal life."
The feeding is going well. She loves baby food, and I am thankful for her appetite. It is easy to forget the days where we prodded her to take 2 ounces of a bottle.
I will update in a couple of days after we go to the nephrologist for a checkup on Macy's kidneys.
I have updated with pictures we had made at the beach.
Have a blessed week!

Thursday, July 8, 2004 10:22 PM CDT

We are finally settling in after the move and traveling to Memphis to see Layton's family! Last week, Macy started back on the solid foods and Ansley began potty-training. All is well so far. As for Macy's eating, she has had a great appetite which is such a blessing. She loves the fruits and is much more picky on the veggies. For me, another blessing is that I DON'T have to thicken her baby food like I do her bottles. I acutally just open a jar and feed her like other babies!
When it rains, it pours for Macy. It feels like she has been sick with one thing or another for the month of June. She came home from Memphis last week with congestion and sneezing. After a couple of days of stuffiness, she started getting up every two to three hours in the night. (Is there any relief?) Suspecting an ear infection, we went in to see our pediatrician. And, wouldn't you know we have a double ear infection going on? So, this was our third in a month and our fourth ear infection total. We go back in three weeks to check on the (hopefully decreasing) fluid in the ear. I guess tubes in her ears is a lingering possibility if the ear infections continue. Despite all of that, Macy is still a little smiler. God has blessed her with a happy disposition, and it really is wonderful!
Other than that, it is a calm week. We kick-off with more doctor's appointments next week. Coming up within the next month, we see the nephrologist (kidneys), eye doctor, another swallow study to check her feedings, developmental pediatrician, and the cardiologist. We also are continuing with her occupational and vision therapy through Early Childhood Intervention. I will keep you posted as we visit each doctor.
Despite the full schedule, we are blessed. Our girls are at a great stage with each other where they love to be together. I am shocked at what Ansley can get away with on Macy. She will lay on her and be loud right up by her face, and Macy seems to think she is the greatest. If Ansley cries or laughs, it is certain Macy will follow with the same reaction. And, Ansley really seems to "take care" of Macy. I know God gave Ansley to Macy to be her little protector throughout life.
I find that for me, it is conscience decision everyday to let God be in control. I wish I could just wake up and not worry and be anxious and try to figure it all out. Right now, I want so bad for Macy to sit up on her own. And, I just have to not think about where she will be with that skill in a month, a year, or her whole life. It is still an unknown. I honestly have to get up and tell myself that today we will work on it and practice, and that is all God asks us to do. He will take care of the rest- for Macy, for me, and for you.

"5 Trust in the LORD with all your heart, and do not rely on your own insight. 6 In all your ways acknowledge him, and he will make straight your paths. 7 Be not wise in your own eyes; fear the LORD, and turn away from evil. 8 It will be healing to your flesh and refreshment to your bones." Proverbs 3: 5-8

Thank you for continuing to leave us messages on the website and say "hi." You continue to encourage us, and I only wish we could do the same for each of you!

Please check out the new pictures!
God bless you all!

Wednesday, June 30, 2004 3:07 PM CDT

Hi everyone! We are home from Memphis, and Macy is over her stomach flu. She started to feel better over the weekend, and she was back to her playful self before we left the Dale's house.
On a much smaller scale than the stomach flu, the girls have picked up a runny nose and congestion. (Do you think I am making akk this up or what?) June has been a sick month for us. I imagine it is with all of the transition of moving and two out-of-town trips. But overall, I can't complain. Things are good.
Yesterday, Macy went for a checkup to her pediatric neurologist. He was encouraged by her verbal and social skills being at the age appropriate level. He also felt good about her overall development. However, he noticed two developmental "mild" abnormailities (I have noticed these prior to visiting with him.)
Macy prefers to stand instead of sitting down. When she sits down, Macy's legs tend to straighten out instead of bend up towards her to help her prop up. The bending is normal development while the straightening of the legs is not. She seems to only do this when she is sitting. In addition, Macy's arm strength is weak when propping her body weight on them. She doesn't automatically stick her hand out to catch herself when falling over. Both of these "issues" are considered mild, and they can often be overcome with therapy, work, etc. Although I don't want Macy to deal with any abnormalities, I feel blessed that her issues are small and something we can work on (and pray about) each day at home. I stay positive that Macy will be sitting and walking before we know it. This is a prayer for her that I often say.
Over the past week, we have come in contact with many people who have been praying for Macy (at Layton's home church, etc.), and I want to share with you that we have been overwhelmed at the compassion of each and every one of you. Even though I write these journal entries, I sometimes forget that anyone really reads them. And, when we meet people who know our family through these postings and have prayed for us and share something with us specifically from Macy's life, I see blessings from God each and every time. Please know that your continued encrouagement and prayers sustain us. God has been preparing our lives for years (even though we didn't know it) with amazing family, old friends, and new friends to support us for this situation and rally around Macy. What a blessing!
Please check out the new pictures.

Wednesday, June 23, 2004 10:08 PM CDT

Macy does NOT have chicken pox! YEAH!!!! We went to the pediatrician last week to find that Macy had a post-viral rash following her stomach virus. Well, we can handle that easier than chicken pox. She also had an ear infection so she started antibiotics. Then, on Saturday she went back to the dr. and her ear looked great.
On Saturday night, her virus seemed to flair up again. (Did I mention we are moving and celebrating our anniversary all at this same time?) On Monday morning, Layton stayed with the movers while I took Macy back to the pediatrician for the third time in a week (we might as well move into her office). Her virus was still hanging on and we were fighting raging diaper rash. We left with medications, and we went home to finish our move.
Tuesday morning, we left for my inlaws house in Memphis, TN. This was Macy's first trip to Memaw and Pepaw's house. And wouldn't you know on the trip here to Memphis, she began to throw up. Throughout the trip yesterday, she couldn't keep any bottles down. Which also meant she was not getting her kidney medicine. This continued throughout the night, so we called the pediatrician this morning and made a plan of action to test Macy's blood and check for dehydration.
Some girls may have a boy in every port, but Macy has a hospital in every port. So, this afternoon we loaded her up and took her to LeBonheur Children's Hospital in Memphis. My sister-in-law works there, and she was so helpful to get us connected with doctors and nurses.
Lebonheur was very helpful to get us in quickly. All the while, we are in debate if one of us should get on a plane with Macy to get home quickly, drive home, or wait it out. Now with most kids, it would just be the stomach virus and that is it. But with Macy, we stay cautious on these things because her stroke and previous careflite for dehydration started along these same lines.
We were thankful to hear tonight that Macy's labs look fine. So, we are now slowly getting her to eat. As you can imagine, we are not the most fun company for my inlaws!
As for our move, (if I haven't mentioned this before) we have decided to move closer into town to be near the hospital and Macy's doctors. All of them are across the Dallas area from where we have been living. It will be so helpful to be closer to the hospital where she has labs and x-rays done. Until our house is done, we are staying with my parent's in Coppell. Talk about a houseful!!!!
In spite of life's curveballs, God is good. He continues to bless us through our girls and our family and friends. In times of distress (like today with the hospital situation), I am the type of person to get panicky thinking we could end up in an out of state hospital without any of Macy's doctors to treat her (what about Layton's work, Ansley, etc. etc.) But somehow, God grants me the peace to know that He will get us through it. He has shown us that over and over again. It is still hard for me not to watch a day like today unfold and have a fleeting thought of, "I might lose Macy today." I seem to forget how fragile she is in spite of her fighter attitude. And, I just feel so blessed beyond belief that God has chosen to give her to us for another day. I want to always feel that way. I want to wake up and feel blessed again for another day with Layton, my girls, and everyone close to me. I pray that God will always remind each of us how precious life is and it is a gift to always be thankful for.
May God bless your week and may you see His glory!
Please check out the new pictures from our beach trip!

Monday, June 14, 2004 1:43 PM CDT

Well, we made it through our first vacation with the two girls! We drove the long 12+ hours to Destin, Florida, and we spent a couple of days on the beach. In spite of the drive and the girls being out of their element, they did great. Ansley couldn't get enough of the beach, the sand, and making a mess. Macy was not much of a beach fan. She preferred being in the air-conditioning condo, but we learned to enjoy the beach while sitting under the umbrella. All in all, we had fun and it was great to get away.
The week after we got home, both of the girls were sick with a virus, so we are trying to get over that. We are also moving out of our house next week. We will be moving over towards the hospital and the area where all of Macy's doctors are. Along with packing and two sick kids, we are off to the doctor this afternoon because Macy may have the chicken pox! I guess this is one of those weeks we will look back and laugh about in 10 years!
I will update on Macy's condition and with beach pictures at the end of the week.
Sorry to be brief. I hope that God is blessing each of you this week.
God bless you!

Friday, May 28, 2004 1:15 PM CDT

Hi everyone! We went on Thursday morning to have Macy's bloodwork tested again. They drew blood from her heal, and it came back with an extremely high potassium again. Apparently, a potassium reading has a chance of being altered through a heal stick (why did it take two heal sticks and two high potassiums for the lab to figure this one out?)
So, as soon as I got home from the hospital and put the girls down for a nap, I got a call saying that we needed to come back and redo the test by running a line in her arm for the blood! UGH!
So, we loaded up after naps, and we headed back to the hospital. (It should be called Dale Medical Center at this point!) The lab ran a line in Macy's arm, and HALLELUJAH it was the easiest arm line she has ever had. She hardly cried, and I was so proud of her.
The results came back with everything completely normal. PRIASE GOD! So, we will not have to run labs for a little while, and we can give her veins a break.
Please be in prayer for Macy's eating habits. (Unlike Ansley and I) Macy is a bird eater. It is a job in itself to make sure she is eating enough and taking all her bottles and medicine. I know eating habits may sound like a silly prayer, but we want her to keep gaining weight!
Along this topic, last week at church, our preacher mentioned that often we don't pray because we feel like our requests are small or insignificant. But, we must remember that God is not limited in His ability to handle ALL requests.
"Cast your cares on the Lord, and He will sustain you..." Psalms 55:22
God wants us to approach Him wherever we are in our life and with whatever is on our hearts. That is such a lesson to me because I often feel that if I start praying, then I have to cover every single then at once and it feels overwhelming. But, we don't have to "cover all of our bases" when talking to God. Just tell Him what is on your heart at that moment.
"This is the confidence we have in approaching God: that if we ask anything according to His will, He hears us." 1 John 5: 11
How awesome to think that someone (He) is always there whenever we need someone to listen. We don't even have to have the rights words- He knows our hearts and mind.

Have an awesome week! We will load new pictures in a week or so.
God bless you!

Saturday, May 22, 2004 9:23 PM CDT

We have had an eventful day with Macy and wanted to update you all. At Macy's six month checkup (on May 6th), I mentioned that we had her blood tests run. One of Macy's numbers was lower than normal, and this was what her daily medication was supposed to be helping. At that time, Macy's kidney doctor doubled her dosage to corespond with her weight gain since birth.
On this past Thursday, we went to the pediatrician and had her bloodwork tested again to see if the higher medication dosage was helping. Yesterday afternoon, we received the results that her numbers were still low. This was alarming because I didn't know if it meant her medication was not working anymore or if her kidney function was worsening. After playing operator with Macy's pedicatrician and two different nephrology (kidney) doctor's office locations, we were told to take her into the hospital this morning and repeat the bloodwork. UGH!
So, this morning I loaded up the girls, and off we went to the hospital. Apparently, the tests at the hospital can be more accurate becaue they are tested more quickly after being drawn. The doctor was hoping that Macy's inital labwork may have been incorrect because they had waited for the courier to pick it up and test iton Thursday.
Well, we had to register in the ER, and then we proceeded to the lab. Ansley and I sang to Macy and held her hand while she (unwillingly) had her bloodwork done. We waited for an hour for the results. The lab workers seemed panicky, and said I should call Macy's doctor immediately. Apparently, her kidney numbers looked fine, but her potassium was "critically" high according to them.
I raced the girls home, and put a page into the nephrologist and our pediatrician. My pediatrician was great, but she did want me to check with the nephrologist. After an hour and a half, I called him back and insisted to speak with him. Of course, it was an on-call doctor who has never even seen Macy and doesn't know her crazy history. He tells me word for word (on the phone), "We need a repeat of her labs. A high potassium could stop her heart, and she could just die." Imagine being at home alone with two kids and a doctor tells you this. I tried to stay calm as I have always learned to get multiple opinions on this stuff. My pediatrician review the labs and stopped us before we loaded up to go back to the hospital. She said all of the other labs on Macy looked great, and she felt like it was an error because of the way (and timing) that her blood was drawn. She said as long as Macy acted fine (which she was), to call her on Monday and we would check labs again this week. She didn't want to overpoke Macy unless necessary. I still don't understand the panic from the other doctor, but I trust my pediatrician as she has always been such and advocate for Macy.
So, that was another day in the life of Macy. Meanwhile, she is innocent to it all and enjoying life. Macy is still working on sitting up, and she is holding her bottle some when she eats.
In a couple of weeks, we are taking the girls to the beach. Because of our crazy pregnancy with Macy, we have literally not be out of town in over a year, so we are excited to get away with the girls.

As I was reseaching Macy's blood concerns on the Internet last night, I came across a statement a parent had written about their child's problems. The statemnt said, "If God brought you to it, He will bring you through it." That has really stuck with me today. It is so fitting for each of us in life as we deal with trials.
When we were still at Children's Hospital, one of the nurses saw Macy's scripture hanging over her bed. She, too, was a Christian and asked if she could pray with me. We held hands over Macy's bed, and in her prayer I remember her saying, "God, remind Summer that Your grace is sufficient for her." What a wakeup call! I had never even taken the time to understand that before, and I didn't even fully grasp it. But, I just kept repeating it to myself during those low times. God has promised us that He loves us, and He will somehow guide us through times, even when we feel He isn't there. Isn't it comforting to know that even when He feels so silent, He isn't? We just may not see the results of His work until later on.

2 Corinthians 12:9 - but he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." I will all the more gladly boast of my weaknesses, that the power of Christ may rest upon me."

Have an awesome week. Please check out the new pictures, and I will update soon.
God bless you all in your week, and thank you for continuing to be an encouragement to our family.

Sunday, May 9, 2004 7:56 PM CDT

We have taken a while to journal again. Actually, we didn't have any new information for a little bit, so I didn't want to bore you with day to day stuff.
Two weeks ago Macy did not have any doctors apointments the whole week! That was the first (an only) time since her birth that we have had a week like that We were almost bored around here. We are now resuming some checkups and apointments, but we are hoping that the doctor schedule will begin to slow down.
Macy is still on the soy formula and things are going well so far. The last time we noticed a formula intolerance, it took about 3 weeks, so I will still watch her closely on it for another 1-2 weeks.
Macy went for her six month checkup last Thursday. She weighed 11lbs. 9oz.! We were so excited to see her weight gain. Macy checked out nicely at the pediatrician. However, her bloodwork (yes, more bloodwork) showed that Macy needs an increase in the kidney medicine she is on. The doctor said her kidneys are no worse, but as she grows the dosage of her medicine needs to grow to compensate. So, we have upped her medicine dose, and we will check her blood in two weeks and pray for a normal result.
Macy is trying to sit up, and she is getting more mobile on her tummy although no crawling at this point. On the day she turned 6 months, I couldn't help but think back to the life changing day when she was born. I am amazed at the evident work we have seen from God. I have experienced highs and lows that I never knew I could experience. There have been moments where God felt so silent, and other times where I feel like He is shouting what He wants me to hear. And, one thing that we have truly learned is to be thankful today for the little things. When I see my girls smile or roll on the floor together, I find myself thanking God for that moment. I constantly find myself saying, "Thank you God that we are all healthy today." And, then tomorrow I will start being thankful for that day. God has shown me that I can't worry about ever little thing that may happen in the future, and that has been a HUGE lesson for me.

Phil. 4: 6-7 "Have no anxiety about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which passes all understanding, will keep your hearts and your minds in Christ Jesus."

I can honestly say we have experienced this sort of peace during our trials with Macy. It is our prayer to those of you have been such support for us that God will bless you and grant you the same peace in your life.
God bless you all!
Check out our new pictures!

Sunday, April 25, 2004 10:37 PM CDT

Happy Monday to everyone!
Macy saw the nephrologist (kidney doctor) this past week. Basically, it was more or less to establish her as his patient. That way, if things should change over time, he will already know Macy and her situation.
Since her stroke and kidney failure in November, Macy has been on a medication to help an area of her kidney function that has not fully recovered. The way we check this specific funtion is by running a line in her arm and testing her blood. The nephrologist said he felt like Macy's kidneys would make a complete comeback as she grew and developed.
On Wednesday, the doctor checked her labs. Each doctor seems to order labs for Macy because it is the "easiest" way for information. But let me tell you it is hardly "easy." Macy has tiny little veins in her tiny little body, and each time it takes multiple tries in multiple arms/legs to run the IV-type line and then we have to wait for it to draw enough blood. As she has gotten older and stronger, she fights it to the finish. (You know she is a fighter.) I always try to sing to her and be strong for her to make it through the procedure. On Wednesday, after three unsuccessful attempts, the staff finally did a prick in the foot and took a small amount of blood which would only run limited tests.
The tests showed that Macy still needed the medication for her kidneys. Wishful thinking, I would love for her to be off of it. But her neuphrologist suggested that in three months when we return, he will take her off of it and she how she does. If her blood work shows her numbers to be low, then we will put her back on the medication. However, it is a praise to God that she is only on one medication since she was sent home from the hospital on seven of them.
This week, we will try to pull her from the Nutramagen formula (this one is specially broken down for irritable tummies), and we will switch to a soy formula. Soy is a lot cheaper and not as stinky. We are praying that her tummy will tolerate the soy formula well. I will update you towards the end of the week on the formula switch.
And to share with you our biggest praise of the week, MACY IS ROLLING OVER BOTH WAYS! We are so excited for this developmental milestone, and she just seems to love rolling again and again. Please continue to remember her developmental milestones in your prayers. It will be such a joy for us if she is able to sit up in a month or two, and we are praying for her continued development.
I want to share with you a verse that we talked about at church today. It sums up what our attitude and life should focus on. It has stayed on my heart, and I wanted to pass it on to you.
"Finally, brethren, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is gracious, if there is any excellence, if there is anything worthy of praise, think about these things... Not that I complain of want; for I have learned, in whatever state I am, to be content." Phillipians 4:8,11
God bless you all this week!
NEW PICTURES!

Saturday, April 17, 2004 8:38 AM CDT

Everyday with our girls is truly an adventure!
Yesterday (Friday) we were scheduled to see Macy's cardiologist at her satellite office (which happens to also be our pediatrician's office.) About an hour before we plan to leave, Ansley runs to the front door to tell her friend Jackson bye, and she slams her head into the TV armoire. Within seconds, it swells to the size of a purple, bleeding golf ball! So, we load all the girls up, and Layton takes Ansley to one room to see our pediatrician while my Mom and I take Macy to see the cardiologist in the next room. Anyhow, Ansley was fine minus a scary looking bump and her pride.
The visit with Macy's cardiologist went very well. After doing an echo on Macy's heart (like a sonogram), Dr. Clapp told us that the area under Macy's aortic valve had grown even more than expected in comparison with her heart. At this time, that area measures 6mm and normal would be 8mm. Dr. Clapp said the left side of Macy's heart which has always been small, had grown well and registered in the normal range.
Dr. Clapp did say that of her patients that had this narrowing under the aortic valve, almost 100% of them eventually had open heart surgery to open that area up. So, she felt like Macy would eventually need to have that area addressed, but at this time she felt that would be years away! We feel like that gives us many years to keep praying the narrowing goes away!
We will see Dr. Clapp again in four months to check the narrowing under her aortic valve.
Macy will see a kidney specialist this week on Wednesday. We will update you after that appointment and let you know what he can find about her kidneys. At this time, Macy is only on one medication and it is a kidney med. to help their function. We are hoping to learn how long the doctor expects her to be on this medication.
God bless you all this week!

Saturday, April 10, 2004 9:40 PM CDT

We have had a busy week (as usual) keeping up with Macy's busy schedule. Monday morning was Macy's CAT scan on her liver. And (thanking God) the spot on Macy's liver was found to be a calcification and not any type of tumor. While the calcification seems harmless, the kidney doctor will check her kidneys in two weeks to make sure they are working properly and calcium is not building up.
That afternoon, we saw her pediatrician. After running some tests, we learned Macy was not tolerating her new formlua well, and it was irritating her tummy. So, she is on Nutramagen which is stinky and expensive, but it has seemed to make her happier this week. Now, if only we could get her sleeping through the night again!
Macy saw her occupational therapist this week. Her OT was very encouraged with Macy's social interaction and her desire to stand up. We worked on some stretches to help Macy combat any extra tone in her legs and to help build strength.
To wrap up the week, Macy had a swallow study done at the hospital on Friday. After watching Macy feed via an x-ray screen (this technology is amazing), Macy showed improvement with taking a bottle. We will still continue to thicken her formula some with rice cereal. While we were there, we gave Macy some baby food. She took it well and seems to like it. Robynne, the occupation therpist, was encouraged to see Macy enjoying the food, and she said we do not have to thicken it! YEAH!
This coming week, we will see Macy's vision therapist, her Early Childhood Intervetion developmental teacher, and then we will see the cardiologist on Friday. That will be a big day. We ask that you pray specifically for Macy's aortic valve- that it will have grown in size and will not require surgery.
May God bless you all this Easter weekend!

Friday, April 2, 2004 11:14 PM CST

We wanted to update you on the upcoming week for Macy. She will be turning 5 months on April 6th, and I can hardly believe it. In one way, it has flown by that she is not a newborn and now is a social, wiggly little baby. On the other hand, I can't believe this crazy road began such a short time ago!
When Macy had her chest x-ray a couple of weeks ago, a calcification was noticed on her liver. After going back to review the x-rays while at Cook Children's Hopsital in February, it was also seen on her x-rays there. At this time, the doctors feel that this is most likely an effect of the trauma she sustained after birth. From one x-ray to another, the calcification has not changed in size or shape. However, to be on the cautious side, our pediatrician would like Macy to have it checked out one more time and verify that it is not a tumor of some sort.
We will be going this coming Monday morning at 9:30am to have a CAT scan done on Macy's liver. The doctors are hoping that they can do the procedure without having to sedate Macy. I, too, want Macy to avoid the anesthesia if at all possible. She definitely has had her share of medication, and so I am praying for a calm baby that morning! We should have the results back sometime during the week.
Then, on Friday the 9th, we will go to another hospital for a follow-up swallow study. At this appointment, Macy's occupational therapist will examine her feedings to see if her formula still needs to be thickened. The OT will also watch Macy feed with a spoon to check for any swallowing issues as well.
Please keep Macy in your prayers as she will undergo these procedures this week. We are praying for God to continue and pour His blessings on Macy by making her healthy!
We are constantly encouraged by your messages, and we are praying blessings for you all that God may bless your lives each day!

Thursday, March 25, 2004 9:46 PM CST

Macy has been busy learning some new things lately. She has started cooing and "talking", and she will stand up when you hold her hands. She seems to be very proud of these skills as she keeps wanting to do them over and over!
Yesterday, Macy saw a developmental pediatrician for the first time. Macy weighed in at 10 pounds 2 ounces. While we were there, the nurse practioner did a lot of observing Macy and playing with her to see her skills. The doctor placed some of Macy's skills at 4 months (right on where she should be) and some of her language skills were between 2-3 months of age. All in all, the doctor was very encouraged by this. Macy seemed to be progressing at the right pace. We will go back to see her in 4 months. Until then, we discussed a list of skills to work on with Macy.
Over the next two weeks, we may repeat the chest x-ray to have comparison films for the x-ray from last week. We also plan to repeat Macy's swallow study with the occupational therapist to see if Macy still needs her formulas thickened with rice cereal. After that, the developmental pediatrician recommended we begin baby food!
On April 16th, we will be seeing Macy's cardiologist. Please be in prayer for that visit. Dr. Clapp will be looking at Macy's aortic valve (and surrounding area) to see if it is too small. If the area surrounding the valve is too small, Macy will possibly need another heart surgery (this time would be open heart). We are praying that God will help that part of her heart grow so that she may avoid future surgeries.
Thank you for all of your encouraging posts. We read each and every one, and they mean so much to us. We will update you soon! May God bless each of you, and may you see His glory everyday!
CHECK OUT THE NEW PICTURES!

Thursday, March 18, 2004 10:58 PM CST

We wanted to update you on Macy since we have been home from the hospital. Last week, she saw a gastrointestinal doctor. He was working with us as we transitioned Macy's formula.
Ever since Macy left Children's Hosiptal in December, she has been on a formula to help avoid fluid-build up around her lungs. Over the weekend, we transitioned her off the formula and onto a regular formula that the GI doctor suggested. Today, we had a follow-up chest x-ray to check for fluid around Macy's lungs. Her lungs looked clear! We will follow-up with another chest x-ray in a week.
Also next week, Macy will see a developmental pediatrician who specializes in children with delays or disabilities. We are anxious for that appointment and her assessment of Macy.
As for our everyday life, Macy is trying to roll over and is getting very close! Also, she discovered her voice yesterday morning, and she has been cooing ever since. If only we could get her to like being in the car, life would be great! :)
Thank you so much for your continued prayer. We will update after our appointment with the developmental pediatrician and 2nd x-ray next week!
God bless you!

Monday, March 15, 2004 7:40 PM CST

WE WILL HAVE A NEW UPDATE AND NEW PICTURES ON THURSDAY!
Until then, please pray for Macy as she begins a new formula this week and will have a chest x-ray on Thursday to see if the fluid around her lungs has returned by being on the new formula.
God bless you!

Tuesday, March 2, 2004 8:41 PM CST

WE ARE HOME FROM THE HOSPITAL!
Macy left Cook Children's Hospital yesterday afternoon. We are hoping not to frequent anymore hospitals in the near future. Macy is doing well and back to smiling, trying to roll over, etc. Because her sodium levels were just above normal when Macy was discharged, we went to the pediatrician today to have them followed. And, of course Macy's stubborn little veins proved to be a challenge for the nurses to draw her blood today. We should have the results back on her sodium levels tomorrow which will (Lord willing!) be back to normal.
As soon as we got home from the pediatrician's office, we begin our first occupational therapy session. Kris, our OT, was great at showing me activities to do with Macy for her development.
As for upcoming appointments, we will be seeing a gastrointestional doctor. He will help us switch Macy's formula. Currently, she has been on one that helped combat the fliud around her lungs when she was born. However, it is believed that she has outgrown the fluid, and we are going to try a new formula (with a followup chest x-ray to watch for fluid.) Once we change her to a formula that won't be harmful to her kidneys and/or heart, then we will have another swallow study to decide how much to thicken her formula (this helps the choking and reflux.) And so goes a day in the life of Macy Dale (and Mom!)
We have been so encouraged by all of your messages and prayers. Macy's aunt has compiled a binder with each and every one of your journal entries so that one day Macy can read about the amazing support system she had!
We will keep you posted within the next week about Macy's progess, development, and more pictures.
Please check out the new pictures we have loaded with this journal entry!
God bless you!

Saturday, February 28, 2004 8:37 AM CST

We wanted to update you all on Macy's latest hospital experience!
Over the past week, Macy started getting sick. Her pediatrician felt like she had a stomach virus and that it would run it's course within 4-5 days. However, on Wednesday night, she became even more sick and couldn't keep any food in her. She wouldn't respond to Tylenol for her tummy ache and hardly slept the entire night.
Thursday morning, we took her into see her pediatrician, Dr. Levy. Macy had lost almost a pound since the week before. The nurses also took blood to run Macy's labs. However, Macy has the hardest time because of her tiny veins and the line had to be run multipe times! Because of Macy's past history and tiny size, Dr. Levy decided to admit Macy into Plano Presbyterian for 24-48 hours and give her an IV so that she would not dehydrate. We went home to pack our bags and make bottles for the hospital.
While we were at home getting ready, Macy (who still had not slept much since the evening before) started to worry me. Her face looked tiny and pale, she was not moving much, and she began to look really sick. Once again, I was scared for her, and I flew in my car to Plano Presbyterian Hospital.
When we got there, the nurses begin to run an IV line on her. Because she was becoming so dehydrated, the nurses could not get an IV in her. They tried multiple times in her head, arms, and feet. Between that, the hunger, and no sleep Macy (and me) were beside ourselves. Her eyes were getting dark circles, and I was getting panicky!
At the point were we were contemplating a surgical IV line and after four more tries, they were finally able to get an IV line in Macy!!!
Her blood was drawn and it showed her sodium levels to be very high. This was scary becauase her brain and kidney insults at Children's Hospital had gone along with an abnormal sodium level.
Dr. Levy felt Macy needed extra care. The only two hospital options with the physicians Macy needed were Children's Hospital (where she was at birth) and Cook Children's Hospital in Fort Worth. We chose Cook Children's Hospital. Care Flight came to load Macy in the transport, and they flew Macy to Fort Worth.
She has been in the ICU since Thursday night and has done much better since she has been rehydrated. Her virus is running it's course, and she is taking her bottles again. We are hoping to be home by early next week.
I asked Macy's pediatrician if our new life included crazy trips to the hospital like this every month. She said that Macy simply was a tiny newborn in a rough winter full of sickness. She felt that as the spring came around and Macy grew bigger, she would be able to better fight off typical illnesses like this one.
We have included some new pictures, and we are still awaiting our Care Flight pictures and will put them on in a couple of days!
Please pray for Macy's recovery and for our sanity! We can't wait to have her home again and see her precious smile!
God bless you!

Thursday, February 26, 2004 1:04 PM CST

I must be short because we are off to the hospital. Macy has been sick this week and can't keep her food in her. Over the week, she has not continued to get better and is having a tough time fighting the virus. Lat night she barely slept at all and didn't respond well to Tylenol. At the doctor today, she had lost almost a pound. So, her pediatrician has decided to admit her to Plano Presbyterian to keep her hydrated and check her kidneys, urinary tract, etc. We expect to be there 24-48 hours, but we will keep you updated.
Please pray for Macy!
God bless you!

Friday, February 20, 2004 10:07 PM CST

This afternoon we met with Macy's neurologist (Dr. Miller) to review her MRI scans. By looking at Macy's brain, Dr. Miller felt that Macy had a stroke while in Children's Hospital. Her damage is in a very defined area which is typical of stroke damage. However, the damage on her MRI looked less severe than the damage shown on her CAT scan. This indicates to her neurologist that Macy's brain has started to compensate for some of the damaged areas.
On her MRI scan, the damage is localized to a speicifc area of her brain. Dr. Miller said this is an area that can often be more easily recovered in a baby's brain. He was very encouraging as he left a lot of hope open for Macy's future. Her long-term physical and mental prognosis is still uncertain. However, Dr. Miller said that it is a possiblity to recover from a stroke like this without major damages (in comparison to the devastating news we were given at Children's Hospital by the neurologist on staff.) By one year of age, he felt like we would have a better feel on Macy's motor and cognitive abilities. Most importantly, he was excited to see the constant progress that Macy is making on her own!
Macy will go back to the pediatrician for her four month checkup at the beginning of March. She will begin alternating "playdates" with Early Childhood Intervention (ECI) starting this week. She will be recieving occupational and vision theray. At the end of March, Macy will see a developmental pediatrician who specializes in children with disabilities. And, we are back to the cardiologist in mid-April.
We continue to ask you for prayers. Please pray for Macy as she grows and progresses each day. Also, we ask for prayers that we will not be jaded by Macy's past "ups and downs" but will allow ourselves to be so encouraged by her recent good news.
God bless you all!
CHECK OUT THE NEW PICTURES!

Thursday, February 19, 2004 2:19 PM CST

I wanted to give you the update that we have so far. Macy had her MRI yesterday afternoon, and she did great through the whole experience (including not eating for over 5 hours!) We were originally scheduled to meet with her neurologist after the MRI so that he could look at the new scans. However, he was not in the office late yesterday afternoon. We have scheduled an appointment with him for tomorrow (Friday) at 2:30 p.m. At that time, he will look over her MRI, compare it to her CAT scan from Children's Hospital, and let us know how her brain function looks.
Since we just love to "doctor hop" these days, we saw her pediatrician this morning. Macy is weighing in at 8lbs. 8 oz. and her weight, length, and head growth are growing exactly along a normal baby curve! Her pediatrician and neurologist are both encouraged by this.
We wish we had more information for you, but we will update you with that and new pictures tomorrow evening.
God bless you all!

Monday, February 16, 2004 8:22 PM CST

Hi Everyone! Macy has a big week ahead of her. On Tuesday, the occupational therpaist will come and assess Macy. Then, we will have a meeting with the OT, the vision therapist, and Macy's Early Childhood Intervention consultant to make some goals for Macy and what she may accomplish over the next couple of months.
On Wednesday at 4pm, Macy will have an MRI. Being that she has to lay still for a while, she will have to have anesthesia. We ask for your prayers for the actual event as well as the results. We are still praying prayers of healing. Macy has amazed us with her strong will and what she is determined to do. We ask that you pray for good results from Macy's MRI. We will update on Thursday to let you know more about the testing.
God bless you all this week!

Wednesday, February 4, 2004 0:06 AM CST

Since we have last journaled, Macy has had a couple of doctor's appointments. Last Tuesday, we went to see a pediatric ophthamologist for her eyes. Although she is still very young to tell, Macy has Cortical Visual Impairment (CVI). This means that her eye makeup and function is correct, but the signals from her brain have been damaged. Macy responds well to light, the ceiling fan, shadows, etc. However, because of the CVI, she has trouble focusing and tracking things. The doctor said that many children with CVI improve greatly, and this is often between the first two years of life.
Today, we went to see a pediatric neurologist, Dr. Miller. He was very encouraged by Macy's behavior. He said she seemed very alert, held her head up well, took a bottle well, and her head growth was right where it should be on a normal growth scale. Another encouraging sign was that she did not have a brain murmur which he said is common to hear in children with brain damage. He wants us to follow up with an MRI within two to three weeks. This will allow him to make a further assessment on how her brain is looking. Dr. Miller felt like the next four months would be very telling on the level of development for Macy's gross motor skills. Of course, like everything else with Macy, only time will tell what she will be able to do.
We are starting our meetings with Early Childhood Development. They are a state program that helps children with disabilities. On Feb. 17th, an occupational therapist and a vision therapist will come and assess Macy. Then, we will begin weekly "playdates" with each of them to help Macy and teach us things we can do for her every day.
As for us, life feels very normal when we are not at the doctor's office. The girls are so much fun together. Ansley thinks she is Macy's mom and is constantly giving her the passy and wanting to hold her. Macy seems to really prefer being with Ansley, too.
We ask that you pray for Macy's upcoming MRI and for the daily stress of talking with doctors, insurance, and billing companies! :)
God bless you all!
NEW PICTURES HAVE BEEN POSTED

Sunday, January 18, 2004 9:53 PM CST

Hi everyone! We wanted to update you on how Macy is doing. She turend 10 weeks old last Thursday. On Monday, she weighed in at 7lbs. 2 1/2 ounces. She is still little, but she is growing more each week!
We have had a crazy week and wanted to share our latest story. Since Macy has been home, she has done well taking a bottle. However, Macy sometimes spits up (a lot!) when she is unable to burp. Because of the formula she is on, the spitup is very thick and can get caught in her throat. When this happens, we use a bulb syringe to clean her throat out and let her catch her breath.
Last Tuesday night, she spit up after her feeding. There was a lot of it, and it caught in her throat. She was unable to breath. Layton called me in there, and I took her to the sink. I turned her over and tried to get it out of her. Then, I tried using the bulb syringe to suck it out. However, none of these things were working. Macy started turning very pale and then blue. She was very stiff and she was not making a noise. Her eyes had panic in them, and she started bubbling at the mouth. We called 911. Layton did CPR on her, (we had to learn this when we left the hospital) and her breathing would come in shallow for a second and then stop again. The entire time, her eyes were open and looking very scared. The EMTs arrived on the scene very quickly. One of them took Ansley out of the room, and the others helped Layton. Macy was able to spit up the rest of it, and the EMTs gave her a little oxygen. At this point she was breathing, but was still very pale and still. Her pulse and the oxygen levels in her blood were not normal. So, Layton and Macy loaded up in the ambulence and headed to Medical City Hospital. A chest x-ray showed Macy's heart and lungs to be fine. This led the doctors to believe that it indeed was an isolated choking incident. We went home later that night.
In order to prevent this from happening again, we had a swallow study done with an occupational therapist on Friday. Our OT was such an awesome lady. God truly put her in our lives for a reason. Her daughter also has Turner Syndrome, and she is the first person we have met to experience TS first hand!
At the swallow study, we learned that Macy was aspirating milk into her lungs and nasal passages during her feedings. The OT said this is probably what also contributes to Macy's fussiness because it can irritate her. To prevent this and help with the spitting up, the OT has put Macy on a thickened formula. We have been doing this since Friday to try and help her. Between the special formula and the ground up thickener, I feel like a gourmet chef when preparing her bottles! :)
In two weeks, Macy will be seeing a pediatric ophthamologist for her vision. The first week of February, she will have another opinion with a new neurologist. That same week, we will also begin working with Early Childhood Intervention to see if Macy qualifies for occupational therapy.
Despite all of these doctor visits, Macy is doing very well. She is holding her head up and she started smiling at the end of last week. At this time, she seems very developmentally appropriate in the things she is doing.
Please continue to be in prayer for Macy!
God bless you!

Tuesday, January 6, 2004 8:31 AM CST

We hope all of you had had a wonderful holiday season!
Last week, Macy went to see the cardiologist for the first time since leaving the hospital. An echocardiagram was done on her heart. Macy's heart seemed to be doing very well. The ventricle on the left side has grown to a normal size, and it is taking pressure off of the right side. Over time, Macy's cardiologist did feel she would need some attention to the area below her aortic valve and a little bit of narrowing still in her aortic arch. Overall, her doctor was pleased to see Macy's heart in the shape it was in, and we will go back in the spring. Also around that time, we will be seeing the neurologist again for a followup cat scan.
Macy's bloodwork at the pediatrician still showed some of her numbers to be off. These are likely a result of the kidney function. We will be rechecking the numbers soon.
Yesterday at the pediatrician, Macy was (finally!) up to 7 pounds and 19 inches!
We will update soon with a new update on how she is doing at home. Also, we plan to have more pictures up shortly.
God bless you!

Monday, January 5, 2004 8:19 AM CST

WE WILL HAVE AN UPDATE ON TUESDAY, JANUARY 6TH!
There is a new picture loaded in the picture section!
Happy New Year!

Monday, December 29, 2003 0:00 AM CST

We are sorry to have taken such a long time to make a new post. Between the holidays and settling in with two kids, we have been busy around the clock!
Our family is really enjoying Macy at home. Her first Christmas was a lot of fun. Ansley opened all of Macy's gifts for her. Altough she doesn't get the Santa concept (like Ansley does!), this was a such a special Christmas to be home together as a family.
As for Macy's condition, she is taking a bottle well. However, she is still tiny (about 6 pounds) and takes about 1 1/2 ounces every 2 to 3 hours. She is having trouble keeping all of her feeds down, and that is something that her pediatrician is watching closely to make sure Macy is gaining enough weight.
Macy is weaned off almost all of her medications. Her pediatrician followed up with some bloodwork last week. It showed that some of Macy's lab numbers are still not normal. We go back to the cardiologist this week to see how her heart is performing. We are hoping that Macy's followup heart echocardiagram will tell us if it is her heart that may be causing the lab work to be low.
We have new pictures on this page, and we are working on a collage of pictures to add soon. We will keep you posted this week after Macy's weigh in at the pediatrician and has her heart echocardiagram at the cardiologist!
We hope you all have a wonderful new year! God bless you!

Wednesday, December 17, 2003 10:43 PM CST

It has been a while since we have updated the website, but we have been so busy with settling in at home (as you can imagine!)
Macy is finding her place at home very fast. She seems to enjoy being at home. We are really enjoying having her at home, too. Macy seems to love being in her bouncy seat and staring at the Christmas tree.
We went to her pediatrician visit last Friday. Her doctor is helping to guide us in the right direction for Macy's care. We will go back this week to weigh Macy again and see if she is gaining weight. At 5 lbs. 13 ozs., she is a tiny six week old!
Our future is still so uncertain, and we are taking each day as it comes. We continue to ask you for prayers for our family as we adapt to become a family of four.
We should have some new pictures of Macy and Ansley in the next couple of days!
God bless!

Wednesday, December 10, 2003 9:46 PM CST

WE ARE HOME!
Tuesday afternoon, Macy's doctors decided that she was ready to leave the hospital (she wasn't the only one ready to leave). Her nurses hugged us bye as we loaded up the car. Then, we brought Macy home for the first time.
Macy has her days and nights mixed up from being in the hospital where days and nights are the same. So, she was up all of last night, and she is trying to get used to being home.
We will be seeing her pediatrician on Friday and the cardiologist within the next 1-2 weeks.
We will continue to update this web page with new pictures and information. Thank you to each and every one of you who has sent us a sweet message. We have read them all and they truly boost our spirits.
Check out the photo album for new pictures of Macy at home. We will continue to update you as things happen!

Monday, December 8, 2003 8:58 AM CST

We wanted to let you know that we have loaded new pictures of Macy on this website.
As for Macy's condition, she is still doing about the same. Macy looks beautiful in spite of all her complications on the inside.
We are about to complete our fifth week of being at Children's Hospital. She is taking a bottle, but sometimes her feedings make her sick. Her nurses are watching her to decide if her medications or special formula may be contributing to the problem.
We will keep you updated throughout the week with any changes with Macy. We ask that you continue to be in prayer for Macy's comfort and for our entire family as we experience these trials!
God bless you!

If this is your first time to Macy's website, please read the past journal entries to hear her story!

Saturday, December 6, 2003 9:36 AM CST

First of all, thank you all so much for your words of encouragement. It truly means more to us than you will ever know.
At this time, Macy�s condition is much the same. We had a second opinion with a different neurologist on Thursday afternoon. His opinion turned out to be very similar to the first neurologist. Although Macy has so many problems going on inside of her, she still looks as beautiful as ever on the outside.
We wanted to update you, and we will continue to keep you all posted with any changes.
We will have new pictures of Macy soon!
Please continue to be in prayer for Macy and the physicians who care for her!

If this is your first time to Macy's website, please read the past journal entries to hear her story!

Wednesday, December 3, 2003 8:19 AM CST

Our hearts are so heavy as we write this message to you.
Macy had a cat scan done on Monday afternoon. We met with the neurologist yesterday to discuss the results of her scan. Apparently, Macy's brain suffered a lot of damage due to a lack of oxygen. While the timing can't be decided for sure, it is likely that she suffered this last week when her lung collapsed and she was having trouble breathing. The damage includes most all areas of her brain. Because of this, she is not a candidate for any further surgeries.
We are meeting with the doctors this afternoon to find out where we go from here with Macy's care. At this time, she is still opening her eyes, looking around, and taking a pacifier. Her nurses have all fallen in love with how sweet she is and have taken extra special care of her!
We know that you continue to be our prayer warriors. We are praying that Macy will not suffer or be in any pain. We are also asking for understanding and peace at this most difficult time.

Sunday, November 30, 2003 7:54 PM CST

Hi Everyone! We have decided to start a webpage to keep everyone updated on our precious Macy. We will try and update every few days or as we know anything new.
For those of you who have not heard our story, we want to give you a little background to what has brought us here.
Twenty weeks into the pregnancy with our second daughter (due November 2003), our delivering doctor noticed on a sonogram that I was missing one of two arteries in my umbilical cord. This is often associated with kidney/heart problems. Because of this, our doctor wanted to do a follow-up sonogram to check the baby. At twenty-eight weeks along, a sonogram showed that our daughter�s brain ventricle was slightly swollen. He sent us to a high-risk doctor who noticed some problems with our baby's heart. More specifically, there was a narrowing in her aorta that would require surgery shortly after birth. Also, the left side of her heart was on the small side, and this could possibly lead to other surgeries as well.
Throughout the rest of our pregnancy, our daughter's brain and heart was monitored via sonogram. God began working miracles on our daughter during that time when He brought her ventricles back down to a normal size (which our physician was surprised to see and commented that we must have a lot of people praying for her!.)
Our daughter, Macy Caroline Dale, was born on Thursday, November 6th, at 8:45am. She was having trouble breathing at birth and was taken directly to the NICU. We were not even able to see her. Around 1pm that same day, the transport team from Children's Hospital took her to their hospital while she awaited surgery.
Macy's first surgery was Monday, November 10th. Going into the surgery, the doctors were still unsure about the left side of her heart. They planned on fixing the narrowed aorta, but told us that if this didn't look good at the end of the surgery, they would do a much larger open-heart surgery for the small left side. We were surrounded by family and friends as we waited the news from the OR. Finally, a call came in from the nurse that Macy's surgery had been successful and the open-heart surgery would not need to be performed. We were truly overjoyed, and we knew God had been in surgery room with our daughter!
Over the next couple of days, Macy did well, and we were sent up to the recovery floor on Thursday, November 13th. She begin taking a bottle and starting to flourish.
After being on the recovery floor for a couple of days, we noticed Macy begin to get extremely fussy and was having trouble keep any of her feedings down. We felt that something was wrong, but the doctors felt it was only a feeding issue. However, over the next couple of days, Macy began to get more sick, her color changed, and her temp. dropped. Still, the doctors were willing to let us take her home and work out the feeding issues. We did not want to take her home with her feeling so bad.
On Wednesday night, November 19th (before we were to go home), Macy was having trouble breathing. An x-ray revealed that her left lung had collapsed due to fluid that had collected around her heart and lung, and she was taken back to the ICU. Because of the trauma her body had endured, Macy�s kidneys shut down. The cardiologist performed a heart catherization on Macy to see how her heart was reacting. The pressures in her heart were high, and it looked as though Macy would need the original surgery (a Norwood procedure for a Hypoplastic Left Heart) to help the left side of her heart. This would commit her to multiple surgeries over the first couple of years of her life and quite possibly a heart transplant later on.
Macy spent the next couple of days on dialysis to restart her kidneys. The doctors watched her very closely. They were reluctant to perform the surgery unless absolutely necessary because of the medical pathway it would commit her life to. This same day, we were also informed that Macy had a chromosomal abnormality called Turner�s Syndrome.
And, that leads us to where we are now. Macy has been back in the ICU for 11 days. She has been taken off of the ventilator and dialysis for a couple of days, and so far she is doing it on her own. The doctors are watching her to see how her heart is functioning on it's own so that they can make an informed decision on the need for surgery.
I want to share with you that we are Christians. We believe that God has a purpose for each person's life. And, we know that God is and has been using Macy since before she was born. Our family has been surrounded in prayer, and we have felt the power and the presence of God. We are continuing to ask for prayer. We are praying that God make His will known to us for Macy�s life. Thank you for your continued prayer!

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