History

Thursday, June 2, 2005 12:31 AM CDT

Kira is very very close to walking! "Baby" is her new word and she uses it all the time. She got her molars and wants regular food so she can use them. She will point and yell at whatever she wants. She says "thank-you" but we need to work on "please".

Her rash is almost cleared up so we are pretty sure it was a phototoxic reaction to her hydrochlorothiazide. She is only on Lisinopril once a day now and her blood pressures seem to be doing OK. How far we've come!

Thursday, March 17, 2005 11:09 AM CST

Kira is doing great! She is 11 months old today and quite a corker - she takes after her papa. "Huh" is her favorite word and she uses it a lot. She will also scream "da-da" like she means it - I get quite a kick out of that. "Ma-ma" usually comes out when she is not happy with me. After we changed her formula to Nutramigen she developed very quickly from scooting to crawling and now to cruising. She is up to around 17 pounds.

We had our follow-up visit with Dr. Corkins, her gastroenterologist on Thursday, March 10th. He thinks that her reflux could primarily be attributed to her milk allergy and we are beginning to wean her off of her reflux medications.

We saw Dr. Ebenroth, her cardiologist on Tuesday, March 15th and Kira had a chest x-ray and ekg performed. Dr. Ebenroth is very pleased with how her heart is looking and performing and she still has no restrictions. Her heart is looking and functioning almost normally and her murmur is not nearly what it used to be. The hope is that the opening that was created in her pulmonary valve will grow as she grows, so that her current state can be maintained. If it stays as it is now, while she grows, she will need additional surgery in the future. We will see Dr. Ebenroth again in one year.

We saw Dr. Leiser, her nephrologist on Wednesday, March 16th. He is very pleased with her blood pressure. It still appears to be well controlled so we will keep her on her current dosage of blood pressure medications. If she continues to grow and stays on the current dosages, then the hope is that she will eventually outgrow the medications and won't need them anymore. We see Dr. Leiser again in 6 months.

Wednesday, January 12, 2005 11:33 AM CST

This is sort-of a side note to the last journal entry. Dr. Corkins called Michelle at work on January 7th. He was just reviewing the biopsies from Kira's endoscopy that was performed December 15th. Apparently stress gastritis is not her problem - she is allergic to milk protein! He, like the rest of us, was blind-sided by this revelation. She is now on Enfamil Nutramigen which is a hypo-allergenic formula. Most babies eventually grow out of this type of allergy so we certainly hope she will be one of them! Can you imagine someone in our household unable to eat regular cheese??? (Cheese was one of Kirsten's first words!)

We switched her formula the night of January 7th and she has already been eating more (her weight gain this past week was 8 ounces - up to 15 pounds 14-1/2 ounces), sleeping more and just plain more happy! She is also tolerating laying on the floor for longer periods of time. She has her next appointment with Dr. Corkins in Fort Wayne on March 10th.

Monday, December 20, 2004 11:55 AM CST

Merry Christmas!!

Kira has had several doctor's visits and tests done these last couple of weeks. We don't have all of the "official" results back yet but I will report what I know.

She saw Dr. Leiser (her nephrologist) on December 10th and had a kidney ultrasound and renal scan. Dr. Leiser is extremely pleased with her progress and we will be switching her blood pressure medicine from Captopril (which was three times a day) to Lisinopril (which will be ONCE a day). The renal scan showed that her small kidney is now doing 40% of the total work load - it was only doing 25% when she was born. Improvement in that kidney is not something that was originally given to us as an option so it is wonderful news! There is also real hope that she will grow out of her medicines, since she is still not needing to go up to higher doses.

Kira is now seeing Dr. Corkins, a gastroenterologist. She has had problems with reflux and throwing up small amounts of blood for the last four months. She had a gastric emptying study done December 9th and an endoscopy on December 15th. The endoscopy showed that she has stress gastritis - a rather common occurance for "cardiac babies". The cells in the digestive tract metabolize very quickly and become stressed by less-than-normal heart function and lower amounts of oxygen. She was on Zantac and Metoclopram (which is a generic for Reglan). She will remain on the Metoclopram but will go on Prevacid instead of the Zantac. Prevacid reduces the amount of stomach acid being produced and, hopefully, this will allow her stomach to heal up. Her stomach has small erosions (Dr. Corkins called them baby ulcers) all over.

In March we will return to Riley for appointments with her cardiologist, nephrologist, and gastroenterologist. (Say that five times fast.) Hopefully we will not add any more doctors to that list! I think we've made it to all corners of Riley already!

She had a stomach flu last week and lost 6 ounces so she is back down to 15 pounds. She is eating much better now so she should start to put on more weight again. She is not crawling - she won't lay on the floor and play. She will sit and play for awhile but really wants to be held. She does like her play saucer for limited amounts of time and will jump up and down - her legs are very strong and she seems interested in walking. We are really trying to get her to attempt crawling first because we know how important it is for motor skill development, she is just so difficult (I don't know where she gets that from...). :)

Wednesday, September 8, 2004 2:35 PM CDT

Hello! Kira had an excellent follow up visit with cardiology on the 7th. Her gradient, which is the difference in pressures between the two sides of the heart, is now at 17-18!! To put it in perspective -- normal is around 15 and hers was in the 50's at birth. Her surgery had brought it down to around 20 and at our last visit in June it was 25. Her ekg was totally normal. Dr. Ebenroth is very pleased with her and we won't need to see him again until March. Also, the regurgitation through her valves is normal. Basically, her heart is functioning normally and she currently has no restrictions! It is just a matter of seeing how her heart grows as she grows.

We saw her kidney doctor today. Her blood pressures are still fluctuating but are mostly falling within a normal range. She had blood and urine testing and we will find out those results in about a week. In December Kira will have a kidney ultrasound and a Mag-3 renal scan to see what her kidneys are up to (and in particular, what that little kidney is doing!). She is doing well on her current dose of meds so no changes will be done there. She is 13 pounds, 4 ounces and is still on the same dose of meds she was when we left Riley (at 7 pounds). That is a good sign that she may be able to come off of the meds eventually.

Other than all that, she is a very happy baby, smiling and laughing a lot. She is also extremely active! She was evaluated by First Steps last week and no developmental delays were noted. She is in the 25th percentile for weight which is excellent for her. She is just doing very, very well!

Monday, July 26, 2004 12:29 AM CDT

Kira continues to do well - she is acting like a happy 3 month old! She "talks" to us all of the time and MUST be sitting up so that she can see everything going on. She especially wants to keep an eye on Kirsten!

Her blood pressure has become a bit unstable these last few weeks and when we were down in Indianapolis over the weekend we took her into the emergency room at Riley so they could take a look at her. The doctors felt that although we have been getting some low numbers and some high numbers, the over all average is good so, for now, we should just continue to monitor her. There are three possibilities for the fluctuations: 1) the monitor we are using needs to be recalibrated; 2) her medications need to be re-dosed for her continued weight gain (she is up to 11 lbs. 3 oz.); 3) her small kidney is failing. I will send the monitor back to the hospital and take her into the hospital for blood pressures until it comes back. If we begin to get persistently low or persistently high pressures, then her doctor will need to see her and make some decisions.

Tuesday, June 22, 2004 4:13 PM CDT

Kira has now had follow up appointments with both her kidney doctor and her cardiologist and they are both extremely pleased with her progress! She had an echocardiagram done today which showed some narrowing still in the pulmonary valve but her gradient (difference in pressure between the two sides of her heart) was at 25 which is still good and her lung pressure is down to 25-30 which is right where it should be. The Captopril can apparently cause some kidney problems so she had blood and urine testing a week and a half ago and that all came out fine. She weighs almost 10 pounds (obviously she is eating quite well!) Her blood pressure is still under control with the two medications she is taking so we don't need to go up on any of the doses. We will come back in 3 months for her next follow ups.

We are all doing very well. Kira is usually a happy baby and is acting like a normal nine week old! She smiles and laughs and coos and talks and can really put on a show when someone is giving her their full attention. Kirsten loves her little sister and Michelle is back to work now. Grandma JoAnn has the girls during the day and is really enjoying them!

I have added a few new pictures and put the one of her taken after her surgery back on. I will continue to try to update the pictures when we get new ones developed.

Thank you all for your continued prayers!

Thursday, May 13, 2004 1:21 PM CDT

I have the extreme pleasure of announcing that we are being discharged tomorrow! I also need to ask that we have no visitors until at least Monday. Rodney and I and Kirsten and Kira need a few days to try to learn to function as a family.

I know everyone is very excited to see Kira. But I also have to make a few statements regarding visitors per doctor's orders. Kira is in a very delicate condition. Any illness would be VERY dangerous and would most likely send her back to the hospital. Anyone that comes to see her must wash hands and arms before touching her. Also, if you have any inkling that you may be coming down with a cold or flu or whatever, please don't visit with any of us. We are also not supposed to take her to any public places for awhile. If she seems happy Sunday morning then we do plan to go to church for the service. Kirsten will probably be in the nursery (unless any of the kids are sick) but we will keep Kira with us. We plan to stay after the service so that everyone can get a good look at our little miracle!

We are so blessed to have so many family and friends who have supported us. It has been a tough year for us but it has been easier knowing that you all are out there praying for us. We cannot thank you enough.

Additional prayer requests...

- Baby Dane who is recovering from heart surgery that he had on Monday
- Baby Nicale who was born premature at 26 weeks gestation - she weighed 1 pound 15 ounces
- Baby Michiel who is across from Kira (he appears full term and I'm not sure what his problem is but it appears serious)
- Babies Brianna and Jacob who are very tiny premature babies next to Kira and I don't think their parents can be there much

Most of the babies in the NICU are premature. They are born between 20 and 30 weeks gestation and weigh between 1 and 2 pounds. Amazingly, most of these babies will not only live but will be normal kids. To get on my soapbox for a moment, being here and seeing what can and is being done to save these babies, you realize that the ONLY difference between these babies and those that are aborted is that these babies are wanted.

Tuesday, May 11, 2004 1:30 PM CDT

Kira looks better every day! She gave me a little smile when she saw me this morning. :) She is taking all of her feedings and medicine by mouth now and doing quite well at it! She tends to be awake most of the day and wants attention. Yesterday she finally fell asleep around 3pm while I was holding her. I couldn't put her down, of course, so we both dozed for about 2 hours. It was so nice to hold her. She has good head and neck control and likes to be held so she can look around (just like her big sister). She was moved back into the module (out of the "private" isolation room) because they needed the room for another baby. I think she prefers being in with all of the action which is good because I think she will see a lot of action when she gets home.

Cardiology is beginning to set up our follow up visits and I assume that renal will be doing the same. The only thing left for her here is to show a weight gain for a few days straight. She has held constant at 6 pounds, 9 ounces for the last two days so we assume that she will start to gain now. Her face already looks like it is beginning to fill out more.

Monday, May 10, 2004 1:23 PM CDT

Kira continues to get stronger and improve every day! On Friday the doctor told us that some of the nurses felt she wasn't going to be completely successful with the bottle feedings before we would want to go home so we should begin learning to do the gavage feedings (through her ng tube). Apparently that was just the challenge that Kira needed. That's when she began taking at least half her bottle at each feeding (by mouth). And last night she had had enough when papa had to go back home so that he could start back to work today -- she took her entire bottle (2+ ounces) by mouth three feedings in a row. And this morning as I was getting ready to feed her and was distracted talking to the nurse, she decided to grab her ng tube and pull it out herself. Uh-huh. :)

The doctors are pretty happy with her blood pressure and the amount of medication she is on so they are just going to watch her for the duration of the time we are here. One of the medications is a diuretic so she has lost weight (she is under 7 pounds again) but that will improve as she continues to eat more. They are also going to add calories to the breast milk. Once she shows that she is putting on weight well then, if all else continues to go well, we will be discharged. It may be the end of this week or beginning of next.

We had a wonderful Mother's Day. The nurses dressed Kira up including a bow in her hair. There was a card for me (from Kira) and a plaster mold of one of her (very large) feet. Grandma JoAnn got to hold her for the first time! Also visiting were cousins Emily and Cindy, big sister Kirsten, and Randy and Joyce Homes. I also forgot to mention her visitors last week -- Wednesday was Great-Uncle Victor and Friday were Steve and Ginny Mason.

Saturday, May 8, 2004 3:35 PM CDT

Kira continues to do well. She takes 3/4 ounce to 1 ounce from the bottle every time Rod feeds her (that is half of her feeding). Her blood pressure is still a little questionable and they have maxed out (at 6mg every 8 hours) on the captopril so they are going up on the amount of hydrochlorithyazide (please don't check my spelling!). So far she hasn't gone back on the IV medicine (nitroprusside) but that is still a possibility for the short term. She is in a room in the back of the module all by herself and, unlike her big sister, she seems to miss the noise. We think she may be a little lonely. One nurse said that she would cry until he came back there and as long as he was sitting in the chair in her room she was happy. She has been giving us those little baby smirks and smiles and couldn't have timed it better yesterday night. She had been very fussy and the nurse was patting her and the three of us were talking. She was dozing off when all of a sudden she quite audibly filled her diaper. We had a good laugh and the nurse made a remark to Kira that she must feel much better now and Kira broke out in the biggest smile we've seen. It's so nice to experience the normal baby stuff!!

Friday, May 7, 2004 1:39 PM CDT

Kira is doing very well! She was moved to a "private" room this morning which, I'm sure, had nothing to do with the fact that she was extremely fussy and loud.:) She was taken off of all of her IV's last night so she still has the access ports in her chest and on her left foot but they are capped off. She only has two cords connected to her and those are monitors for heart rate, respiratory rate, and oxygen saturations. She took about 3/4 ounce from the bottle last night for Rod but hasn't done much since so her feedings are still by ng tube. She's up above 7 pounds and she still looks pretty skinny (check out the new pictures).

Thursday, May 6, 2004 1:48 PM CDT

Kira is still doing well. She is off of the milrinone (I don't know how to spell that) which was the medication to help her heart beat more efficiently. She also had her arterial IV line removed (that was consistently monitoring her blood pressure). They will be monitoring it solely by the cuff now. She spent the morning extremely fussy but seemed much happier once she got some Tylenol (she doesn't get any pain or sedative medication anymore). We are continuing to work with the bottle feedings and they get a little better each time so we are hopeful that she will catch on within the next few days. We plan to get some new pictures on the website tomorrow some time.

Wednesday, May 5, 2004 12:11 AM CDT

Kira is doing well. It's hard to believe that she had that episode just one week ago. They are still working at stabilizing her blood pressure and getting her off of the IV medicines. That is going well. The doctors plan to have her completely off an IV medicine for her heart today (it makes the heart pump more efficiently). Her kidney ultrasound yesterday showed no blood clots and everything looked fine. She is tolerating her ng tube feedings much better today so they will continue to increase the amount she is getting at each feeding. She will be up to about 1-1/2 ounces every 3 hours by the end of the day. We will be working with bottle feeding today as well. She weighs 6 pounds 13 ounces. We'll have some updated pictures of her added to the website in the next few days.

Tuesday, May 4, 2004 3:57 PM CDT

We got the results of the mag-3 and the renal doctor is "resonably sure" that the reason for her high blood pressure is that her right kidney is too small. Normally the kidneys function equally (50-50) but hers function 75-25. Since it is still handling about 25% of the load, they will not remove it. However, if that changes in the future and it drops to 10% or less, that kidney would be removed in order to hopefully eliminate her hypertension. As it stands now, she will be on medication for hypertension and will have to have it closely monitored (they are still working at getting it stabilized and getting her off of the drip and onto only the oral medications). She will need renal scans from time to time and will add a pediatric nephrologist to her list of doctors (pediatrician, pediatric cardiologist).

She will not be getting the CT scan since they feel they have found the answer, but she did have a repeat kidney ultrasound this afternoon. Cardiology is still very happy with her progress. She is still not eating much by mouth and occupational therapy worked with her today on her feedings. She had an ng tube reinserted yesterday and has thrown up a few times -- we think she's getting too much too fast. Trying to breast feed her wears her out too much so we have decided to focus on bottle feeding for now. When she catches on to the bottle I'll resume efforts. She had her nasal canula (nose piece) removed and her oxygen levels actually look even better than they did. She gets extremely ticked off when she's messed with so I guess she has some Makximenko in her. :)

Monday, May 3, 2004 3:15 PM CDT

I will be trying to put journal entries in at least every day from now on. Things are calming down a bit so I should be able to do that. Thank you all so much for all of the thoughts and prayers and guestbook entries. We'll be able to print the whole website out when we leave to put in Kira's baby book.

Kira's blood pressure has been much more stable. She has been getting higher doses of some oral medications as they are weaning her off of the nitroprusside. She has been awake and alert and we have spent today holding her and trying to breast and bottle feed her. She has lost a lot of weight due to her medications so if she doesn't latch on to one or the other soon I'm sure she will have an ng tube reinserted through her nose and into her stomach so that she can be fed. She seemed most happy today when I held her upright so that she could look around. She had her mag-3 test this morning and we're still waiting on the results. She will get a CT scan today or tomorrow. Other than that, we're all just hanging in there!

Other prayer requests...
-Two families who lost their babies in the last two days
-Baby Samantha who has a pacemaker and should go home this week
-Baby Logan who has had 8 different surgeries since being born 21 weeks ago but is doing well and should go home in the next couple of weeks

Sunday, May 2, 2004 8:30 PM CDT

Kira is doing better. They are "playing" with different amounts of different blood pressure medications and her blood pressure is coming under much better control. It still spiked up to the 140's earlier today for quite awhile but she had just been taken off of the ventilator and was completely awake and alert so maybe she was just real excited. All tests so far have been normal. If she remains stable tonight then she will have more tests tomorrow (a mag-3 test to look at kidney function and a CT scan to look for tumors and what-not). As of her last echo on Friday, her cardiac output is at 63% (normal is 60%) and her heart looks great (at least it looks like her heart should - she has regurgitation in several areas but that's normal for her). It seems to have recovered from the episode on Wednesday night (her output then was 10-15%). She should begin getting breastmilk again tomorrow or Tuesday - her poor little tummy has been empty since Wednesday night!

Visitors today --
Aunt Staci, Uncle Kevin, Cousin Breanna
Grandma JoAnn, Grandpa Dick
Great-Aunt Rhonda, Great-Uncle Keith
Sister Kirsten (well, Kira didn't get to see her big sister but mommy and papa did and we went to the zoo for a nice break!)

Friday, April 30, 2004 1:35 PM CDT

Kira is not doing very well. The doctors have been struggling to keep her blood pressure down. The medications seem to work for a little while and then it creeps back up. This morning it shot up to the 140's and even the 150's (systolic). When they do regain control, it is still high in the 110's and 120's -- they want it under 105. She is undergoing several tests and ultrasounds today to try to determine what is going on. The doctors cannot figure it out. We are hopeful that they will be able to find the cause very soon and fix it.

Thursday, April 29, 2004 12:55 AM CDT

Kira suddenly and unexpectedly took a turn for the worse late yesterday afternoon. The left side of her heart (which pumps blood to the body) had been working fine but began to "quiver" (it wasn't pumping blood to her body very well at all) and she developed acidosis (the ph of her blood became too acidic). She became pale and her temperature dropped and she was in a very cold sweat. She had an unusual cry and looked scared -- she was in a lot of distress. She was moved back to level 3 care in Module 1 at 7:00 pm and was immediately put on a ventilator and a central IV line (into her chest). The doctors tended to her all night. They were able to effectively treat and correct the acidosis but it took until this morning to bring her blood pressure down and return her heart to a more normal state. So far, the doctors can't figure out what caused this. She is being presented to the entire cardiology team today so hopefully they will be able to come up with some answers. Right now they are keeping her completely sedated so that her body can rest.

Wednesday, April 28, 2004 1:01 PM CDT

Kira is doing great! She has been moved to Module 5, a "step down" unit for babies who are more stable and healthy. She is still not latching on real good but is doing much better and we expect her to catch on soon. She has had all of her IV's removed and is only on a few monitors. She has a "nose piece" that is supplying her with some extra oxygen in order to bring down the blood pressure in her lungs a little faster but they are removing it later today. Her regular blood pressure is also a bit high so she is getting an ultrasound of her kidneys today. She had another echocardiogram of her heart yesterday and the cardiologist told us today that she's getting good blood flow through the pulmonary valve (the one they ballooned) and that they are very pleased with the way everything looks. She is quite alert and looking around a lot and seems much more content now that she is off of all of the medications. We are still working on getting more recent pictures on this website, but if you really want to know what she looks like, look at pictures of Kirsten when she was born! :)

Monday, April 26, 2004 1:58 PM CDT

Kira was taken off of the ventilator Saturday morning and we have been attempting breast feeding (she's not latching on yet but I don't care as long as I can hold her!). She will be weaned off of the prostaglandins today and will have her second umbilical IV line removed tonight. A little bit of background info -- the prostagladins are keeping her ductus open (the ductus is the bypass that normally closes within hours after birth). Her ductus was kept open due to her condition (severe pulmonary stenosis) and the type of surgery that was performed (heart catherization to balloon open the valve). She is doing really well so far. We should get a better idea of how well she is doing once the prostagladins are completely removed and her circulatory system has to work normally. She still has regurgitation in the two valves associated with the enlarged right side of her heart but it is not near what it was before. She is opening her eyes a lot and crying and getting fussy when she is hungry so she is acting more and more like a regular baby! We are getting more pictures developed tonight so check back within the next few days.

Friday, April 23, 2004 4:38 PM CDT

Kira is doing very well and has had a very good day. The resident doctor called her their "little star". The ventilator will be removed tomorrow morning and Michelle will start feedings. It will be the first time she will have gotten to hold her since she left Elkhart. We are so thankful that Kira has received such wonderful and professional care. We have nothing but praises to say about Riley Childrens Hospital and its staff. We are hoping to have some pictures to add to the page in the next couple of days. Thank you everyone for your continued love, support and prayers.

Friday, April 23, 2004 12:21 AM CDT

Kira's surgery went very well on Thursday, she was done in about 2 1/2 hours. The doctors were very pleased with the procedure and got the results they wanted. Kira is doing very well today and is expected to be off the ventilator very soon and start feeding. Uncle Doug came down to see her today and to spend some time with us. We would like to thank every one for thier prayers for Kira and a speedy recovery.

Thursday, April 22, 2004 8:49 AM CDT

Kira went in for her surgery at 8:00am and is expected to be out in about 3 hours if the surgery goes as planned. We were able to see her, talk to her and touch her before she went in. We want to thank everyone for there continued prayers, cards and gifts, all have been very much apprecieated. Big sister Kirsten is doing very well and is enjoying her time with her grandparents. She has seen some pictures of Kira and says "baby Kira ouchies", she is going to be a wonderful big sister.

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