History

Thursday, December 15, 2016 12:41 AM CST

Update: They now have both leads placed and are beginning the process of removing her old pacemaker. Everything is going fine.

Thursday, December 15, 2016 11:44 AM CST

Update: They have both leads placed. However, they can't get one of the leads to stay where it is supposed to. They are "waiting on a part" from the adult hospital. As soon as they get that, they will finish placing the lead an start the process to remove the old pacemaker.

Thanks for the prayers and support.

Thursday, December 15, 2016 10:42 AM CST

Update: They just got access to Kennedy's heart. They are starting to place the leads now. They have decided, for a number of reasons, to place the pacemaker in her right shoulder. This will make for a bit more difficult recovery time (because she is right handed) but longterm it is for the best.

Thanks for your continued prayers and support.

Thursday, December 15, 2016 9:16 AM CST

They have just taken Kennedy back. I felt like they had a really good team. Kennedy was a trooper. She teared up a little but was really brave. She understands what they are doing and they were very sweet with her as they explained things. I'm thankful for gentle spirits as all of the nurses and doctors around her had GREAT bedside manner.

They have to run some tests before they decide exactly how they will place the new pacemaker. We don't know yet which shoulder they will place it.

I will update later.

Thank you for your prayers.

Wednesday, June 15, 2011 8:18 PM CDT

Kennedy had a great night last night. She slept through the night with NO PAIN!

She has started eating and drinking today. She has held everything down today. She has complained a couple time that he stomach was bothering her. However, that has not lasted long.

Kennedy walks like a little ole granny - too cute! She is really protecting her chest. However, she is simply amazing. She is not even taking pain medicine.

Kennedy is struggling with being down. She makes a pitiful little sad girl. She had cabin fever big time today. We got out and took a walk this evening (Kennedy in a stroller). That was nice.

Thank you all for your continued prayer and support!

Tuesday, June 14, 2011 9:28 PM CDT

This update will be short but we wanted to get an update out here tonight.

Today was an extremely long and emotional day. However, Kennedy did GREAT! Her surgery went well. She actually came home with us tonight.

She is still working on being able to hold some ice chips or crackers down. But we are so thankful that she is home sleeping in her own bed.

I will post more tomorrow (when my mind is working correctly).

I can't even begin to explain the love and support that we have felt these last two days.

Good Night!

Monday, June 13, 2011 2:10 PM CDT

Kennedy will turn 7 on June 24th. WOW, what an amazing blessing. Many of you have been walking with our family and praying for Kennedy since well before she was born.

Update on Kennedy from a medical standpoint. Kennedy has done amazingly well since her Open Heart surgery (Feb 2005). She has 5 leads (wires) from her pacemaker to her heart. One of the leads stopped working a couple of years ago. The Dr. was able to adjust a couple settings on the pacemaker. This was fantastic as it did not require surgery. There has been the occasional scare (or overreaction by Rose and I). Other than that, Kennedy has lost a few teeth and occasionally skinned her knee.

Well, the time is here. We found out this morning that Kennedy needs a pacemaker replacement. Due to scheduling issues, her surgery will be tomorrow. WOW, not a lot of time to think about it (probably a good thing). Although, we are not looking forward to Kennedy going back in for surgery, we are reminded of God’s goodness in our lives. Reading back through the journal entries on Kennedy’s Caring Bridge site makes us realize just how present God was in our situation. Then we read the guestbook and are amazed at the love and support that God surrounded us with.

Even in the midst of what proved to be one of the hardest seasons of our lives, God showed Himself if many ways. I don’t know why we still get surprised when He works things for His good. Kennedy’s pacemaker was supposed to kick into ‘elective replacement mode’ back in April. However, it did not kick into that mode until last Tuesday. This is AMAZING! Dr. John’s told us that a new pacemaker just became (TWO weeks ago)! New pacemakers come out all the time but Kennedy has a more specialized pacemaker. If Kennedy would have needed a new pacemaker in April or May, she would have received the same type that she currently has been using. This new pacemaker will better serve Kennedy in many ways! PRAISE GOD!

Prayer points:
From a medical standpoint, this is a relatively simple procedure. However, a surgery is a surgery (especially when it is your little girl). Our mind tells us that this is just a step that we have to take to continue walking in the blessing that the Lord has provided for us. Please pray that our hearts will catch up soon. As you can imagine, there are many emotions circling around as we prepare for this next step. As you know, Kennedy is an amazing little girl! Although she is being very brave, she is a bit nervous about the surgery. Also, she is really not excited about not being able to swim for three weeks after the surgery.

Thank you for walking with our family, we love you all!

Tuesday, January 5, 2010 2:42 PM CST

We had a scare with Kennedy this week. She developed two lesions on her feet. They were swollen and red. She got a very high fever (104). She had the shakes and some vomiting. The Dr's were concerned about the infections so they kept us overnight. They wanted to rule out the possibility that the infection could have come from the inside (her blood).

She is doing better now. They are monitoring her blood for the next three days. As long as no bacteria grow in this time, we should be back into the safe zone.

Thanks for your continued prayers.

Thursday, July 2, 2009 9:04 AM CDT

I'm sorry for the loooooong delay between updates. That is actually a blessing. It means that Kennedy has been doing great and she has not had any major health issues since her open heart surgery.

So, here we are today! Kennedy had a checkup this week. They found that one of the leads on her pacemaker has gone back. It was the positive side of a bi-polar lead on her ventricle. This is significant because, the pacemaker itself can be used as the positive. YEAH! So, Dr John's made some adjustments and we should be back on track.

We are entering a season where we have to be more aware of what is happening with Kennedy. The pacemaker will have to be replaced around Christmas 2010. That is only a year and a half away - YIKES. Kennedy has been receiving phone checks on her pacemaker twice a year (yes, they can check her pacemaker over the phone). Because of the bad lead and the approaching surgery, we will start doing Kennedy's phone checks every month now.

All in all, we are still extremely encouraged by the miracle that God has given us. Let's not forget all that the Lord has done in her life. It doesn't take long reading through past journal entries to see the hand of the Lord on Kennedy.

By the way, the princess turned 5 last week.

Thank you Jesus!!!!

Tuesday, January 2, 2007 10:56 AM CST

Hi everyone! Happy New Year. I thought I would update since it has been a LONG time (almost a year). Kennedy is doing very well. She goes to the cardiologist about twice a year & we do phone in pacemaker checks in between those visits to be sure the pacemaker is still working.

Kennedy is very busy, has a great vocabulary & keeps us all on our toes. She spends her time playing with baby dolls, her sisters & trying to keep out of trouble. She is waiting the arrival of her new baby brother this coming April. He is a healthy baby boy with no issues!!

Kennedy's last visit went extremely well. We hold our breath at each visit hoping nothing new has arisen. Everything looked fantastic. She still has some valve "leakage" that may correct itself over time, it may be a non-issue. Worst case scenario is in her twenties she will have to have valve replacement surgery.

Her pacemaker battery is going to last until she is 6 or 7 so no major surgeries until then. Even then, this should be a minor procedure.

Thanks so much for all your prayers- we love you all!!
We have moved into a bigger house now & are preparing for our little boy so your prayers are much appreciated as we adjust to life again.
Rose

Wednesday, February 8, 2006 9:41 AM CST

Sorry this update is so late!! Kennedy is doing GREAT! No further issues since last February. Dr. Johns (Kennedy's cardiologist) is tinkled pink with Kennedy's energy level & her rosy cheeks. Dr. Heil (her pediatrician & elder at our church) is so pleased with her progress. She is growing very quickly & gaining weight as she should. She had several months of "catch up" & now is leveling off in the average range of other kids' her age.

We do a pacemaker check every other month on the phone. We go to see the cardiologist again in April. We go in the office every six months. Her last check up was in October & he was very pleased with how her heart looked. Her battery in her pacemaker will probably need to be changed when she is 5 or 6 years old.

She has an abundance of energy & keeps us all on her toes. She is always climbing & into things she shouldn't be. she is already an avid reader. She will sit & look at books for a long period of time. She is such a joy to us.

Please continue to pray for healing so that Kennedy will not even have to have the pacemaker!!

We love you all!

Rose & family

Sunday, July 3, 2005 11:53 AM CDT

HI EVERYONE! Kennedy's birthday was a huge success. We had about 60 people come to celebrate with us :)

She had a doctor visit on Friday & it went GREAT!! She has moved onto the chart now & is in the 2nd percentile. This is GREAT for her. Dr. Heil said her "active" behavior is a testimony because most kids with chronic conditions like hers are very lethargic & not very energetic b/c of all they have been through. She was all over the place while we were there. She is a VERY happy girl. In the morning she wakes up and just smiles & plays with everyone.

She is just now consistently learning to sleep through the night. So mom is ready for some sleep :)

She is doing some sign language- she knows "milk", "more" (though she has made up her own sign for this which entails smacking herself in the face), & "eat". Jay has trained her to say "da da" when you tell her to say "ma ma" I am not too thrilled about this.

Our next cardiology appointment is not until October- we actually miss seeing Dr. Johns. We do not go back to Dr. Heil for three months- this could be a record b/w Dr. visits.

Thank you so much for your continued support & prayers. We would not be functioning without them.

We love everyone!!
Rose

Wednesday, June 1, 2005 11:25 AM CDT

Greetings all,

Kennedy went back to Dr Heil yesterday for a weight check. She weighed 16 lbs 3oz. WOW! This is great! She is clearly catching up with her peers on the weight chart! This is great news. We are so excited.

Kennedy is mobile now and that keeps us on our toes. She is into everything. Morgan and I crawled around on the floor trying to "baby proof" the house. Kennedy is so much fun! She does not like to be tied down (and I have already bought all that duct tape). She likes to go and go fast!

We are coming up on Kennedy's first birthday (June 24th). What a year it has been (year and a half if you count when the whole ordeal began). We are so thankful and blessed to have support from all of you. I am not one for cheesy words or sayings, but I don't know another way to say it - You will really never know how much you have meant to our family over this time. We appreciate everything that you have done for us (the encouraging words are what got us through).

Please check back in a couple of weeks for birthday details.

Thank You,

Jay

Wednesday, May 25, 2005 2:18 PM CDT

Hey everyone! Thanks for checking the site regularly. We try to keep it updated :)

Kennedy had a weight check in early May. She is finally on the weight charts!! She is in the 1st percentile. The doctor said it was her most impressive weight gain yet. She is doing GREAT!! She looks good, she is crawling (even though it is a three legged quirky crawl), eating well, and just looking good overall.

The cardiologist & pediatrician are thrilled with her. She will have another weight check in next Tuesday (May 31st). She had a pacemaker check last week & all is working well. She does not go into the cardiologist again until October (pending no problems). This has been the longest stretch we have gone so far without being in the hospital. (For a while it was every six weeks we were having major surgery- planned & suprise).

Thanks so much everyone for praying for Kennedy! I know it is the faith and the prayer of the saints that have "abounded much" in these trying times. We love you all!

Kennedy will be one year old on June 24th!! We will have much to celebrate!
Rose

Thursday, April 28, 2005 4:17 PM CDT

Hello Friends,

Kennedy went to see Dr. Johns yesterday. The report was GREAT! Her echo showed that Kennedy is doing better than she has to this point. Dr. Johns took her off of two of the three medications that she has been on for her heart - YEAH! He also was very happy with the way that she has responded since her open-heart surgery. He was so impressed that he does not want to see her back until October - PRAISE GOD!

The one thing that Rose and I noticed was that Kennedy did not seem to gain as much weight as we had expected. We are not really worried about this right now because we learned our lesson last time about the difference in scales. Kennedy goes next Thursday to see Dr. Heil. We have used his scale as our official measurement. We will update the site after that appointment.

On a fun note, Kennedy has 6 teeth now - two on the bottom and 4 on the top. She is becoming a master at using them. I was in the kitchen the other day and I heard Madison scream, as I ran into the other room and Madison was holding her cheek - Kennedy was beside her smiling!

We will post new pictures soon so don't forget to check the photo album.

Thursday, March 31, 2005 6:02 PM CST

Greetings all,

Kennedy went to see Dr. Heil today. Her growth report was good. She weighs 14lbs 5oz. She is not as big as normal babies her age but if you look at the growth chart, she is gaining at the same rate now. This is great news. Dr. Heil is very pleased to see how well she is doing.

We made a surprise visit to Dr. Johns today as well. Rose and I have noticed that every three hours Kennedy has two very hard heart beats (it doesn't hurt her but it does wake her up at night). Dr. John's had never heard of anything like this so he asked us to stop by. After an exam, Dr. Johns speaking with the pacemaker rep, the rep speaking with the engineers in Minneapolis, and the engineers double checking - we finally found out that the pacemaker is testing itself every three hours. This is a "feature" that we will probably go tomorrow to have turned off. This fancy new pacemaker has allot of bells and whistles which is great until they keep us up every three hours at night.

Anyway, Kennedy is doing great. This news about her pacemaker is really comforting (we were about to pull our hair out over her waking up at the exact same time every night). Thank you all for your prayers and support. We will try to update this sight monthly so check back.

Kennedy now has both bottom front teeth and she's not afraid to use them (ask Madison).

We love you all,

Jay

Wednesday, March 16, 2005 3:15 PM CST

Kennedy went to see Dr. Johns (cardiologist) this morning. He was "totally pleased" with her progress. He thought that her echo looked great when she left the hospital and he said that it even looked better today. Praise God! Things just keep improving! Kennedy goes back to see Dr. Johns on April 27th.

They tested the pacemaker today and it is working great. The pacemaker has the ability to predict its own life span and it is saying that it will last for about 5 years. This is good news and it could last even longer as it always takes more than the usual amount of energy the first few months after surgery.

What's up with the scales? Kennedy weighed in at 13lbs 11 oz. today. That is over a pound less than she weighed in two days ago. The doctors attribute this to different scales (which raises question in and of itself). In light of this new information, we are not paying much attention to these last two weight-ins. We will use Dr. Heil's scale for our official weight-ins. Kennedy has an appointment with him again on March 31st.

Kennedy now has two "teefers" that have popped through. They are her front two bottom teeth. She is so cute showing off her new teeth with her recently fattened up cheeks. Many of you have asked and I promise that I will post new pictures soon.

Thank you all for your prayers and words of encouragement. I will post here again after Kennedy's appointment with Dr. Heil on March 31st.

Jay

Monday, March 14, 2005 3:25 PM CST

Greetings all,

Kennedy just left Vanderbilt Children's Hospital. She had a follow up today with the surgeon (Dr. Christian). They removed the two stitches from where her chest tube was placed. Dr. Christian also said that everything looked wonderful. Kennedy's incision looked great and she is healing well.

Don't let your finger (or arm) get in the way! Kennedy continues to eat like a prize fighter preparing to move up in weight class. Today, she weighed in at 14lbs and 12oz. For those of you keeping track, that is an entire pound gained since last Thursday. Kennedy is still on the low end of the scale. She should be in the 17lb range (my unofficial internet searching estimate).

Kennedy goes back to see Dr. Johns on Wednesday. We will update again after that appointment.

Thanks,

Jay

Thursday, March 10, 2005 11:58 AM CST

Can you SUPER-SIZE that? Kennedy just came from Dr. Heil's office. This was her first weight check in since surgery. She weighed in at a whopping 13lbs 12oz. That is GREAT news. Her weight leaving the hospital was 12lbs 14oz. Dr. Heil is very pleased with how well she is doing.

She is eating everything in sight (it is amazing to see how well she is doing since surgery).

Breaking news: Kennedy has a tooth that popped through the gum yesterday.

Another fun fact: Kennedy gets happy and does this little dance where she shakes back and forth. We call it the "KG." Madison and Morgan dance around and sing "do the KG." Kennedy smiles and laughs and does her little dance.

Please pray for rest (especially for Rose). Kennedy has still not adjusted back to her schedule at night. She is getting up one or two times a night.

I will update again Monday afternoon after the follow up with the surgeon.

We love you,

Jay

Sunday, March 6, 2005

Hi everyone!
Kennedy is doing wonderful!! She is eating like a pig!! She loves solid food. We were struggling to get her to eat anything before surgery- now it's hard for her to stop. She is so happy now.

She will go for a weight check this Thursday to be sure she is gaining good. She is due to go back on Monday, the 14th of March for a check up with the surgeon. They will remove her stitches where her chest tubes were. She will go see Dr. Johns (cardiologist) on Wednesday, March 16th to ensure the pacemaker & the surgery "is taking well".

As of now, they say her heart is doing EXCELLENT & she is doing above & beyond what they expected her to. However, they do have to watch her closely for a while to be sure all heals well & continues to do as they want :)

Thank you for all your phone calls, house help, food help, but ESPECIALLY your prayers!!

Rose

Wednesday, March 2, 2005 1:18 PM CST

Good afternoon,

Kennedy continues to thrive at home. She is so happy and doing very well. She had a good night (she only woke up once). She has had a wonderful day. Please continue to pray that she would have a fast and complete recovery.

Pray for our family as we try to adjust and get back into some sort of a routine. Madison and Morgan will be coming home tonight. I will be back at work tomorrow. That means that tomorrow will be a full day for Rose with all the girls at home.

The hope is that this website can fade into the wind. However, I will continue to update it once a week over the next couple of months. I know that many of you are interested in hearing the reports from the doctors at Kennedy's follow up visits.

We love you all,

Jay

Tuesday, March 1, 2005 2:45 PM CST

Good afternoon,

WE ARE HOME NOW!!!!! Kennedy screamed when she saw her sisters, she was so excited. She is now napping in her own crib. I'm sure she must feel so comfortable back at home. The doctors all say that she looks great and they are very pleased with how well she did after surgery. Please continue to pray that Kennedy would have a speedy and healthy recovery. It feels great to be home.

I will post again tomorrow to let you know how she is doing.

Thanks,

Jay

Tuesday, March 1, 2005 9:06 AM CST

Good morning,

Kennedy had a rough night. She was fussy and awake much of the night. She is very tired and she doesn't sleep well at the hospital. That snowballs into a very cranky little girl. There are a couple of things that need to happen before we can go home but we are optimistic that we will be able to go home later today.

Mid Afternoon Update: Kennedy is having a great day!! She is very happy (smiling, talking, and laughing). It is WONDERFUL to see her back to her old self. We will be going home later this afternoon. We still have to get her back on her sleep schedule but that is a wonderful problem to have at this point. YEAHHHHH

Please continue to pray for rest for our family. I will post again this evening.

Thanks,

Jay

Monday, February 28, 2005 8:53 PM CST

Good Evening,

Kennedy had a rough day. She was weak and lethargic for most of the day. She started to get her appetite back in the late afternoon. She ate well (and held everything down). She is acting like she is in some pain. Rose requested that they give her Tylenol with Codeine this evening. We are hoping that helps her rest tonight.

Dr. John's just came by and said that he was very pleased. They will do an echo in the morning to make sure that everything looks the way that it is supposed to look. If Kennedy continues to eat well she should be able to go home tomorrow (that is still wonderful when you think that our "best case scenario" would be going home Wednesday).

Please pray for rest (Kennedy, Rose, and myself). I will post again in the morning to let you know how she did through the night.

Love all of you,

Jay

Monday, February 28, 2005 10:53 AM CST

Good morning (or afternoon by now),

Kennedy continues to do well. She has been a little sickly this morning. She vomited once during the night. Kennedy has not eaten since 2am. Please pray that she will get her appetite back. She is feeling very puny. The doctors are not really concerned. She had a long day yesterday (tubes and IV’s being taken out, medications being switched from narcotics to oral medications getting her ready to go home). She is getting a little cranky (she is tired of lying down so much). We try to let her sit up as much as possible and she enjoys her time sitting up like a big girl. Please pray that she will recover well.

A friend of ours was praying for Kennedy before surgery. She was praying that God would send His angels to be with her. She also prayed that Kennedy would not remember any of this when she grows up. She felt like God told her that He didn’t need to send His angels because He was going to be there with her. She also felt like God told her that Kennedy would remember some of this and that it would be a sweet memory because she would remember that God was with her.

We are moving to the 6th floor sometime this afternoon. The doctors say that we will probably be going home tomorrow. WOW!!!!

I will post again this evening,

Thanks,

Jay

Sunday, February 27, 2005 7:54 PM CST

Hello All,

Kennedy had a good day. She has really enjoyed her meal times. They have taken the chest tubes out. They have now taken everything out except for an IV line. She enjoys sitting up and looking around. She even got a bit playful this afternoon. We are still in the NCCU but that is only because they don't have any regular rooms available.

We will post again tomorrow.

Jay

Sunday, February 27, 2005 12:25 AM CST

Good afternoon,

Kennedy continues to thrive! They have unhooked her from everything except her chest tubes (they leave these in to drain any blood around the heart caused by the surgery. She is ready to be moved to a regular room (out of the PCCU). We are just waiting on a room to open up before they can move us to the floor.

Kennedy has eaten well. She took a bottle last night (that was the first time that she ever took a bottle). She also took a couple this morning. During her last feeding, she got half way through with the bottle and then she realized that it was a bottle that she was feeding from - she was not happy about that! She likes to sit up and look around. She enjoyed having another visit from Madison and Morgan today.

We are so thankful that she is doing as well as she is doing. Kennedy has done better than any expected her to do. One nurse commented that we (Rose and I) had no clue what a baby looks like after open-heart surgery. Thank You Jesus!!!! We give glory to God that He has been with us through this entire process.

I will post again tonight before bed.

We love you all,

Jay

Saturday, February 26, 2005 7:45 PM CST

Praise God!!!!!!

Rose and I are exhausted. Our family has been through a lot (and we still have a lot to go through). In the midst of everything, we want to stop and thank the Lord for all that He has done for us. We hear the reports from doctors about how Kennedy is doing better than they could have expected or even better than she should be doing. We contribute that to all the prayers that have been lifted up for her. Our God is bigger than our problems and our circumstances. That alone is plenty of reason to praise Him.

Kennedy continues to do great (for a baby who just had open-heart surgery). All of her "blood gases" and other "chemicals" are balancing back out (this stuff gets out of wack when someone gets put on the heart/lung machine). She is resting well and she even tried to eat a little bit this evening. WOW!!!!

Kennedy had a visit from her big sisters today. Madison and Morgan spent a couple of hours at the hospital with us. They came armed with Get Well cards and lots of "lovings and kisses." It was great for our family to get to spend this time together (If Kennedy would not of been doing so well we probably would not have let the girls see her).

Rose warned me against making Kennedy's condition seem like she was ready to take a trip to the zoo. I certainly don't want minimize the seriousness of what Kennedy is going through. She has a tough road of recovery ahead of her. She IS still in the PCCU (Pediatric Critical Care Unit).

We will post another update tomorrow.

We love you all,

Jay

Saturday, February 26, 2005 11:24 AM CST

Good afternoon. Kennedy continues to do well. She had a restless night but nothing of major concern. They have stopped giving Kennedy any air through the ventilator (she has been breathing on her own for some time now. They will be taking the tube out in the next hour or so. Dr. Christian wants to be slow and intentional about every move we make (Rose and I like that approach). We are still waiting to talk with Dr. Johns to get more information on her pacemaker (he stopped by briefly to let us know that everything looked great).

Madison and Morgan are coming up to see their little sister this afternoon. They have colored pictures to hang on Kennedy's bed. Please pray that they would have a special covering as this has to be a rough and confusing time for them.

I will post again tonight before bed. Please check back for the latest information and prayer request.

Thanks,

Jay

Friday, February 25, 2005 6:03 PM CST

I know that I said I wouldn't post an update until tomorrow but the news is so good that I need to share. The nurse has been walking us through everything that is happening as far as what all Kennedy is hooked up to and what medicines she is on. The nurse said that Kennedy is on about 1/4 of the medicines that most kids are on coming from this surgery. Kennedy's color is also great. She said that it would not surprise her at all to see Kennedy go to a regular room as early as tomorrow. WOW!!!! What an answer to pray.

Thank you again for all of your prayers and encouragement. Today has been a mental, physical, emotional, and spiritually draining day. It really helped knowing so many people were standing with us.

I will post again tomorrow,

We love you,

Jay

Friday, February 25, 2005 3:51 PM CST

Kennedy is out of surgery and has been moved to the PICU. It will be another hour before we will be allowed to see her. Dr. Christian (surgeon) said that everything went great. They did exactly what they wanted to do and did not face any surprises. The nurse in the PICU said that Kennedy is doing great as well.

Thank you so much for your prayers and encouragement. We will post here again tomorrow to let you know how Kennedy does through the night.

We love you all,

Jay

Friday, February 25, 2005 1:50 PM CST

This is just a quick update to let you know that Kennedy is still in surgery. They have completed correcting the issues with her heart. They are doing an echo on her now to make sure that everything looks like they want it to look. They are also working on getting her new pace maker put in. Kennedy has done great through the surgery. She should be in surgery for another two hours. We will post another update by 5pm (CST).

Thanks for all of your support,

Jay

Thursday, February 24, 2005 1:42 PM CST

Greetings all,

We just got back from the pre-op exam and everything is still on for surgery tomorrow. On a good note, Kennedy's X-ray looked better than it has in a long time (as far as the lungs are concerned).

Here is tomorrow's schedule as we know it. We have to be at the hospital at 6:30 in the morning. They will put Kennedy to sleep and begin preparing her for surgery around 8am. The surgery will begin around 9am. Dr. Christian said that she should be out of surgery by 1 or 2pm.

Kennedy is expected to be in the ICU for one or two nights. She will then move to a regular room for a couple more nights. If all goes well, she could come home as early as Wednesday.

Please continue to pray for Kennedy. Also pray for Rose and myself, today was the time that they had to tell us about all of the complications that can happen. All of a sudden, this seems very real and overwhelming. We are a bit frazzled at this point (to say the least).

Thanks for everything,

Jay

Monday, February 21, 2005 12:01 AM CST

I apologize for this update coming so late, I know that I said I would have it posted by this past weekend. We decided that our family needed to "retreat" for a couple of days. We rented a cabin and had a wonderful time being together and resting.

We would like to thank the elders of our church (Belmont) for praying for Kennedy last Wednesday night. I know that I have had a peace about things since that night.

Here is our schedule for this week. There is a healing seminar at Belmont this week (http://www.belmont.org/conference/school_healing.shtml). We are taking Kennedy to be prayed for on Wednesday night. Thursday morning we go to Vanderbilt for them to put Kennedy through a gauntlet of pre-op tests (this would be a great opportunity for them to see a miraculous healing). Friday morning, we are scheduled for open heart surgery.

Updates: We will have someone update the website by 1pm (CST) on Friday. If we have any additional information or a more urgent prayer request, we will update it sooner and more frequent. Please keep checking back.

On a side note, tomorrow (02/22/05) is the one year mark for all that we have been through with Kennedy. One year ago is when we had our first ultra-sound and they noticed something was wrong with Kennedy. What a year it has been! There is nothing that I can say that will express to you how well we have been loved and supported this past year. We have experienced God's love through friends, family, and even strangers that we have come in contact with this past year. Rose and I thank you and want you to know that we love all of you.

Jay

Monday, February 14, 2005 12:41 AM CST

Kennedy had her bronchoscopy this morning. She did great! They didn't really find anything to be concerned about - that's wonderful news! These results rule out a couple of things that our team of doctors were concerned with. In addition to the bronchoscopy, they also took a "sample" of the lining on the inside of her nose. They will test this to see if her cilia (little hairs) are working properly. This is a minor issue but they wanted to test while they already had her in the OR.

February 25th is the day for Kennedy's open heart surgery. We expect to know more about the surgery in the next week or so. Right now all that we know is that it will be at least 5 hours from the time they take Kennedy to the time we can see her again (pray for strength - that sounds like an eternity to Rose and I). Please pray for Kennedy's health. Pray that the doctors would have wisdom and clarity as they make their decisions. Please continue to pray for our family, as you might imagine, this has been a difficult time on all of us.

Thanks for all of your support. I don't expect any major news before next week but I will post a new message here this weekend. We really appreciate all of you who check the site to see what and how to pray for Kennedy. Please don't forget to sign the guestbook - this brings encouragement to us as we are able to see how well we have been supported through everything.

Thanks,

Jay

Friday, February 11, 2005 2:30 PM CST

Dr. Moore just called and they did not see anything with the dye procedure today. They did say that Kennedy's stomach did not empty out as well (or as fast) as it should have. Kennedy is scheduled for a bronchoscopy on Monday morning. This is a day surgery type of procedure. With this procedure they have to put Kennedy to sleep and go in with a scope to see what is going on.

In addition, Kennedy's breathing has become more labored today. She has also been sweating alot. She is at Dr. Johns' office right now. ***UDATE: Kennedy is scheduled for open heart surgery on February 25th!

Friday, February 11, 2005 11:23 AM CST

We went to see the Pulmonologist this morning. He has ordered a test (non invasive procedure) for Kennedy this afternoon. She goes for this procedure at 1pm. They are going to have her drink some dye and watch how it goes through her body. They are checking for any reflux. Dr. Moore assured us that he would call us this afternoon with an update. We will post it here by this evening.

Depending on how it goes today, we might go back next Thursday for a broncioscopy. This is a more invasive procedure where they put her to sleep and put a scope down into her lungs to see what is going on. We would prefer to avoid this as we are not fond of putting her under anesthesia so much.

We did find out that the entire cardiology department will look at Kennedy's case next Thursday. Dr. Johns has already spoken with the surgeon and she (Dr. Christian) is in agreement that the open heart surgery needs to happen soon. We don't know officially but it might be as early as the week after next (Feb 21st - 25th).

Please continue to pray. Kennedy’s breathing seems to have gotten worse since yesterday. I will update this site later this evening after speaking with Dr. Moore.

Thanks,

Jay

Thursday, February 10, 2005 1:34 PM CST

Dear Friends and Family:

Kennedy went back to see Dr. Johns (Cardiologist) yesterday. The prognosis was not what we had hoped. There are several things going on that are concerning to the doctors. Because of the complexity of how all of these
problems interrelate, I will not even try to go into great detail here. Just know that Kennedy needs prayer.

Non heart issues: Kennedy's lungs have still not improved from when we were in the hospital two weeks ago. There is still part of her lungs that are depressed (collapsed). We are being sent to a Pulmonologist (lung doctor)sometime in the next couple of weeks. ***Update: Kennedy goes to the Pulmonologist tomorrow morning at 8:30***

Heart issues: Kennedy's right Atrium has grown larger than is was (and should be). This might be compressing an airway (which would explain her
labored breathing). In addition, her left Ventricle is not working like it
should.

There are a few other issues but I believe that they are to complicated
for
me to explain in an email (or in person for that matter). All of these issues could be related and compounding to attack Kennedy's little body.

Course of action: Dr. Johns will consult with Dr. Heil today. They will decide which Pulmonologist we go see. Next Thursday Dr. Johns will discuss
Kennedy's case with the entire cardiology team at Vanderbilt. With input from Dr. Heil, The Pulmonologist, Dr. Christian (Surgeon), and the cardiology team, Dr Johns will determine what our next step should be. His
initial thoughts are that they will do open-heart surgery sometime within the next month.

Please pray for Kennedy's health. Also, pray for the doctors and the decisions that they will have to make. Pray for our family as we deal with another round of attacks. God has been faithful to us and we want to
keep our eyes on him and not our circumstances. We will keep you posted on the updates.

Tuesday, January 25, 2005 8:59 AM CST

We were able to leave the hospital on Sunday afternoon. They are still not sure what is going on with Kennedy. They have her on some medication and we will go back to Dr. Heil on Thursday to have her checked. Please pray for her as the medication is making her sick (to her stomach). With her weight being such an important issue, we need to get her little belly settled to hold her food and medicine down.

Thanks,

Jay

Saturday, January 22, 2005 2:29 PM CST

Thank you all for your prayers. The doctors still do not know exactly what is going on with Kennedy. They have run out of tests to take. Kennedy has her appetite back and that is a great sign. We will stay in the hospital until tomorrow (praying).

Please pray for Kennedy to be able to gain weight. That is our major concert at this point. Her weight gain has dropped of and it is concerning the doctors. We need to "fatten" her up.

We will post again when we get a chance. We love and appreciate you all.

Jay

Friday, January 21, 2005 3:21 PM CST

Greetings Friends and Family,

Unfortunately this update comes from Vanderbilt Children's Hospital. Kennedy has been admitted today. The doctors are not sure exactly what is going on with her. They are treating her for pneumonia. She has three places on her lung that are collapsed. She also is having some wheezing when she breathes. Her respiratory rate is high. All of that along with her lack of an appetite is enough concern to keep her in the hospital.

I have spoken to Dr Johns and he, along with Dr Heil; do not believe that these issues have anything to do with her heart.

Please pray for Kennedy's healing. We will update as soon as we have more information.

Thanks,

Jay

Friday, January 21, 2005 3:21 PM CST

Friday, December 31, 2004

Hey everyone!
We had a wonderful Christmas. We stayed home for Thanksgiving & Christmas this year to keep Kennedy at home. Overall, she is a very happy girl. She shuts down a little in the early evening. She takes long good naps in the daytime & sleeps okay at night. She likes to sleep for a couple of nights in a row then be up the next night to keep me on my toes. She has had a bit of cough keeping her up (and me :) at night. See the journal history for the update on her last visit at the cardiology. She will not go back until mid-March. This is the first time we have been able to go so far between visits.

If you visit our page, sign our guestbook (even if you have signed it before) we like to get "mail".

I will try to update the site at least once a month, maybe more if anything new develops.

We love you all and hope you have a wonderful New Year!!
Rose & Jay

Tuesday, November 23, 2004 9:26 AM CST

We had two doctors appointments yesterday to follow up on surgery. Kennedy is doing great!! Her incision has healed wonderfully. Her battery in her pacemaker should last 5 years - maybe even more. When we do change the pacemaker out, she will have open heart sugery to fix her atrial septal defect (asd)- so this will all be pretty intense. Please pray that God would heal her & we would not have to do any more procedures.

Tuesday, November 9, 2004 10:49 AM CST

We are home now!! Kennedy did great last night (slept from 9-6AM!! We are so happy to be back home, but we are very tired from a stressful week.

We appreciate your prayers!!

Rose

Monday, November 8, 2004 2:03 PM CST

Going home now!!! Thanks for all your prayers!!

Monday, November 8, 2004 7:26 AM CST

Good morning!! Hopefully we will go home today. Kennedy's platelet count was back to normal. They think that it may have been a lab error :) She has lost just under a pound & is looking a litte skinny; however, she is doing GREAT!! She is smiling & talking to all the doctors and nurses. We hope the doctors will concur this morning and send us home! Thank you so much for your prayers during this extremely stressful week.

We love you guys!
Rose

Sunday, November 7, 2004 10:05 AM CST

Good morning! Kennedy Grace did great last night. she has been eating, pooping, peeing, sleeping- very well for 24 hours now. The nurses that have cared for her over the week say they are very relieved at how she is doing now. She gave us all a big scare.

Update- fluids around lungs has gone down :) fluid is still around the pacemaker- not nearly as much. No sign of bacterial infection, all tests so far are negative; however, it takes 72 hours for all tests - we should know tomorrow what is going on.

No sign of bacterial infection from blood tests. Platelet count is low- we are doing another blood test to see if this has changed. Overall- cardiologists & surgeons are very pleased with her progress the last 24 hours.

We appreciate all your prayers. Jay & I are absolutely exhausted & emotionally drained. The girls are tired & at our house with "maw"- my mom. I am so glad for her help. It will give the girls some type of normalcy. The girls are worried about KG & her being sick. I put a new picture on the website home page. This was taken last night in the hospital. She is definitely looking 100% better. :)

We love you guys!

Rose

Saturday, November 6, 2004 4:17 PM CST

Kennedy has had a great day!!!!!

She is doing everything that she needs to do to get better and go home (breastfeeding, pooping, and peeing).

She still has an infection around the pacemaker. They will probably drain it again tomorrow. If everything continues to go well, we might get to go home on Monday. I will update this page tomorrow (Madison and Morgan are coming to visit so we might be busy).

Thanks,

Jay

Saturday, November 6, 2004 8:03 AM CST

Good morning,

Kennedy had a wonderful evening last night. After they drained the fluid from around the pacemaker, Kennedy was back to acting like herself. She was able to hold down three small feeding of Pedialite. She also had a great night. She slept from 10pm to 6am (except when the nurses were tugging on her).

We are still not out of the woods. The area around the pacemaker has "puffed" back up. In addition, Kennedy had not had a bowel movement since surgery. This seems to be the primary concern at this point.

We will update you later in the day after all of the doctors’ come by to see her.

Jay

Friday, November 5, 2004 4:06 PM CST

Friends and Family,

Kennedy just got back from ICU. They removed quite a bit of fluid from around the pacemaker (the tests showed no sign of bacteria in the fluid). The medicine that she has been taking is helping her pee (on everything - even daddy). When she woke up after the procedure to remove the fluid, she looked wonderful. She had about a 45 minute period where she was acting like herself (it was wonderful to see that). She is asleep now. There are a couple of doctors who will be coming by to see her tonight. The feeling is that they might let her try and eat tonight. I will post another update later tonight to let you know how the evening goes.

Thanks,

Jay

Friday, November 5, 2004 10:45 AM CST

Please continue to pray.

There is a lot of swelling in the pocket where the pacemaker was placed. We are waiting on one of the doctors to see if they will try to drain some of this fluid. Kennedy has also taken on a lot of fluid in her body. They are working now to try an drain some fluid that has built up around one of her lungs. She is still throwing up anything that she tries to eat. The doctors have stopped all of her feeding and they will be adding nutrients and medicine through an IV. They are also concerned about her breathing (she is taking short shallow breaths). They still don't completely know exactly what is going on with her.

Please continue to pray. Check back here for updates (We will post them as we get them).

Thanks,

Jay

Friday, November 5, 2004 8:52 AM CST

Kennedy had a rough night last night. They had to put her back on oxygen for a while. She is also still not able to hold any food down. The doctors have ordered another round of tests this morning. We will let you know when we learn more.

Thursday, November 4, 2004 6:44 PM CST

Some Good News!

Kennedy was given some medicine late this afternoon and she has made several wet diapers since. She has also been able to hold down her food.

The best news of all - She finally came out of her funk tonight. She looked up at Rose and I and smiled. It was a great feeling to look into her eyes and know that she was "there."

Please continue to pray. We need for Kennedy to have a good nights sleep. In addition, we are praying that all of the blood work comes back looking good. Please check back for more updates.

Thanks,

Jay

Thursday, November 4, 2004 2:49 PM CST

Good afternoon,

Kennedy had not made a wet diaper since before the surgery. This concerned the doctors causing them to run several more tests. She has thrown up several times today and she is not eating. She continues to act like she is in pain and miserable.

We have not heard back from the doctors with the results of the tests. We do know that we will be here at least one more night.

Please check back for further updates.

Jay

Thursday, November 4, 2004 8:43 AM CST

Good morning all,

Kennedy had a rough night. Her oxygen level dropped causing them to have to put her on oxygen. She still seems to be in some pain. She also has not completely awakened since the surgery. She is taking shallow short breaths instead of her regular breathing (this could be because of the pain).

They came this morning and took an x-ray. We have not heard from the doctor on what the x-ray revealed. They said that Kennedy needs to wake up and eat well before they will think about sending us home. It may be tomorrow before we go home.

Thank you for all of your prayers and encouragement,

Jay

Wednesday, November 3, 2004 9:10 PM CST

Friends,

We are in our room now. It has been a long day. Kennedy is having a rough time (which is understandable). She seems to be in pain whenever she is moved. She is finally trying to eat now. We are hoping that she will feel better once she has something in her stomach.

The plan is to get an x-ray in the morning and to test the pace maker. If everything goes OK tonight and with the tests in the morning, we should go home sometime tomorrow.

We will let you know more tomorrow.

Thanks,

Jay

Wednesday, November 3, 2004 5:30 PM CST

Dear Friends and Family,

Kennedy went back for surgery at 4:00. The initial procedure was to stabilize the pacemaker in Kennedy's abdomen. However, during this procedure the doctors determined that they also needed to replace the lead wire that runs between Kennedy's heart and the pacemaker. This requires them to go back through her diaphragm where she had the tear 12 weeks ago.

With this additional procedure, the doctors don't expect Kennedy to be out of surgery until 6:30.

As soon as she is out we will update you.

Thank you for your prayers!

Richard
On behalf of Jay and Rose Tippens

Tuesday, November 2, 2004

***UPDATE - Kennedy goes into surgery at 1pm tomorrow***

Monday, November 1, 2004

Friends, Family, and Prayer Partners,

We just spoke with Dr. Johns. The feeling is that the leads of the pacemaker might have wrapped around the intestines causing Kennedy pain (much like the pain caused by a Hernia). He and Dr. Christian have decided that the best thing to do is to go ahead with surgery on Wednesday. They will go in through the same place that they originally placed the pacemaker. Since Kennedy is bigger now, they believe that they can put the pacemaker between her muscle and fat (something that she was to small for originally). They feel like the risk of leaving it alone is greater than surgery at this point. The risks of the surgery are low and they don't foresee any potential complications. Please check the website on Wednesday for updates (Surgery is not until the afternoon so it may be 5ish before we post an update).

Thanks for everything,

Jay

Monday, November 1, 2004

Good afternoon all,

The team of cardiologist just made their rounds (of course Kennedy was smiling and talking while they were here). Dr. Johns has ordered two more x-rays. He wants to see how much movement there is with the pacemaker. The plan is to send us home today. Dr. Johns and Dr. Christian will discuss the possibility of doing another surgery to reposition the pacemaker sometime in the near future. Otherwise, we will just keep an eye on her and see if it seems to bother her again.

Thanks for all your support.

Jay

Monday, November 1, 2004

Dear Family and Friends of the Tippens:

Good morning. Jay and Rose have asked that I send out a prayer
request for
Kennedy. Last night Kennedy had to go to the hospital. The family was
eating together with friends when Kennedy became inconsolable. Upon
arrival
at Vanderbilt they ran some test and believe that the pacemaker is
moving
into her lower abdomen, which is painful as it presses against her
bowels.

Jay and Rose spent a sleepless night with Kennedy at the hospital and
are
waiting for the doctors to make a decision on what to do next.

Needless to say they are very tired, and they would really appreciate
your
prayers. In addition, they ask that you would pray for them and the
doctors
to have wisdom about how to address the issue of the moving pacemaker.

We'll update you as soon as there is more information.

Thank you so much for all of the prayers and support.

Richard
On behalf of Jay and Rose.

Wednesday, October 20, 2004

Greetings All,

Kennedy went back to Dr. Johns (Cardiologist) today. Everything from her surgery looks great. He is very pleased with how well she is doing. He said the surgery was a success and that it did not look like they would need to do anything else in that area.

They did notice a couple of things with the pacemaker. First, it has moved again! It is now very low in her abdomen. Again, movement does not necessarily mean that anything is wrong. The concern with the pacemaker moving is that it could interfere with Kennedy's bowels or intestines (Dr. Johns believes that there is only a small chance this could happen). The other concern is that one of the leads (wires) could be pulled off of the heart. That would mean that Kennedy's heart would have to be strong enough to sustain itself (it is still around 50 bpm). Dr. Johns is not too concerned about this happening. He believes that Kennedy's heart could sustain her until they re-attached the pacemaker.

The second thing that they noticed is that the pacemaker has to use allot more energy than they had hoped. One reason that it is taking more energy is that it is moving around and it is allot lower than they put it. They now believe that Kennedy will need a new pacemaker when she is two (as opposed to when she is four or five). They will do the open heart surgery whenever they need to replace the pacemaker.

Kennedy's next appointment is in two months.

Thank you all for your continued support!

Jay

*****Please remember that you are all invited to Kennedy's dedication on Sunday (Belmont Church, 11am service)

Friday, October 1, 2004 12:03 AM CDT

This is just a quick update letting everyone know that Kennedy is doing fine. She has recovered well. It is amazing that she did not even get a stitch, all that she required was a bandaid. She was thrown off of her sleep schedule for awhile but we can live with that. She has had a cold this week but she is feeling better today.

We would like to invite all of you to Kennedy's dedication on October 24th. She will be dedicated at the 11am service. For directions or more information about Belmont, please visit their website at http://www.belmont.org/

Thanks,

Jay

Friday, September 17, 2004 8:10 AM CDT

Greetings All,

Kennedy has been doing great. She did well after surgery yesterday. She has been eating well at every feeding. She did not like it when our nurses woke her up at 12:30 and 4:00am but I can't get on to her - I didn't like it either!

She has not been in any pain. She is very happy and she has been talking (cooing) our heads off. It seems that she has allot to say about yesterday. It is wonderful to see her smiling so much.

Dr. Johns came in first thing this morning. He said everything looks great! We will go to him for a follow up visit on October 20th. We are preparing to go home sometime in the next hour or two.

Thanks,

Jay

Thursday, September 16, 2004 1:31 PM CDT

Kennedy did great this morning! The surgery went as smoothly as it possibly could have gone. The doctors were very pleased with the entire procedure. Kennedy has two small incisions (to small to require a stitch) in her groin area. She has already nursed and is sleeping comfortably. Thank you all for the prayers and words of encouragement.

We are in room 7303. We plan on going home sometime tomorrow morning.

Here is more on the procedure for all of you who are interested. The name of the procedure is a Pulmonary Valvuloplasty. Here is a link for more info: http://my.webmd.com/content/pages/9/1675_57805.htm?lastselectedguid={5FE84E90-BC77-4056-A91C-9531713CA348}

I will put another update on this site this weekend (unless something arises that needs to be communicated sooner).

Thanks,

Jay

Wednesday, September 8, 2004

Hello all,

As you might have read in the previous journal entry, Kennedy is going to have the balloon procedure. She goes in for surgery next Thursday (Sept. 16). The surgery is going to be sometime in the morning (we have to be there at 6:30am). If all goes well, Kennedy will be able to come home on Friday.

The plan is to have an update posted on this website as soon as we get back into a room after surgery. Please check here for the latest information.

Thanks for all your payers,

Jay

Monday, August 30, 2004

It has been decided that Kennedy is going to have to have the "balloon" procedure sometime within the next month. Here is the explanation from the cardiologist.

Kennedy is doing fine, but the pressure gradient across the valve has increased to 80, despite the fact that she was not crying during the echo (unlike last time). With the increased gradient, combined with the fact that she is bigger, I thing the risks of not doing the procedure now exceed the risks of doing it, so I think we should proceed. It is very likely that she will do well with the procedure. Her pacemaker is doing OK, but the pacing thresholds are a little higher than they were last time, similar to what they were 2 visits ago.

We will keep you posted.

Thanks for the prayers,

Jay

Thursday, August 26, 2004

Kennedy is doing great. She went to Dr. Heil this week. She weighed 10.2 lbs. It's official - she's a keeper! She is now sleeping 6 hours at night (and heavens opened up and a chorus of angels could be heard singing....Hallelujah, Hallelujah). She goes back to the Dr. Johns today. We will update you with any new news.

Check out the photo album. We have new pictures.

Monday, August 9, 2004 9:05 AM CDT

Kennedy is doing great today. She's a little fussy but that is to be expected. She has received the "all clear" from the surgeon, cardiologist, and pediatrician. We will be going home in the next couple of hours. We have follow up appointments with all three sets of doctors over the next few weeks.

We will keep you posted. Thanks for your continued prayer and support.

Sunday, August 8, 2004 11:16 AM CDT

This is a quick update to let everyone know that Kennedy is doing fine today. She has been alert today. She has also started nursing again. We should be able to go home tomorrow.

Thanks for all of your prayers.

Jay

Saturday, August 7, 2004 1:29 PM CDT

Good afternoon. I recently received a call saying that Kennedy had a
successful surgery. They used a laparoscopic technique, which is less
invasive, and sewed up a 1 inch tear in her diaphragm, putting her
intestines back in place.

They also suctioned some fluid from around her pacemaker and will test
this.

She will remain at Vanderbilt at least through Monday.

Thank you for your continued prayers.

Warmly,
Richard

On behalf of the Tippens family

Saturday, August 7, 2004 7:34 AM CDT

Good morning. Jay just called and said that Kennedy is scheduled to go
into
surgery at 8 am today. She had a rough night and has been placed in an
oxygen tent.

Please keep Kennedy and the entire Tippens family in your prayers.

Richard
On behalf of the Tippens family

Friday, August 6, 2004 8:41 PM CDT

Baby Tippens Set for Surgery Saturday Morning

Hello:

It is 8:40 pm Friday night, and I just spoke with Jay. The doctors
have
determined that Kennedy has a small hole in her diaphragm, and her
intestines are pushing up into her chest cavity. This is contributing
to
her labored breathing. They are scheduled for surgery first thing
tomorrow
(Saturday) morning. The plan is to do arthroscopic surgery (with the 2
small incisions), and if that doesn't provide sufficient maneuvering
room
they will resort to the traditional surgery.

We will keep you updated. Thank you for your prayers

Richard Rose
On behalf of the Tippens Family

Friday, August 6, 2004 5:57 PM CDT

Baby Tippens on the way to the Emergency Room

Hello all:

I just spoke with Jay, who is on his way to meet Rose at the emergency
room
at Vanderbilt. This afternoon, Rose and the kids were at the zoo and
she
noticed that Kennedy was having "labored breathing". As a precaution
she
took her to see their pediatrician who, after examining her,
recommended
that they go to the emergency room.

They don't know any specifics, other than Kennedy's blood/oxygen level
is
low.

Jay asked if you would please pray!

We'll keep you updated as soon as we have a report.

Thank you for your faithfulness.

Richard Rose
On behalf of the Tippens family.

Friday, July 30, 2004 1:06 PM CDT

Kennedy went back to the cardiologist this week. The report was good. She continues to do great. One interesting thing was discovered, her pacemaker has "migrated" to the opposite side of her body. They put it in on the left side of her stomach. It is now all the way over on her right side. The new position is not really a problem as the pacemaker is not affecting any of her organs. For now, they are going to leave it in its current location.

We go back to the cardiologist on August 25th. Thanks for all of your support.

Monday, July 19, 2004 10:04 AM CDT

Kennedy Grace continues to do great!!!!

Check out the new photos!!!

Tuesday, July 13, 2004 8:47 AM CDT

Kennedy Grace continues to do great. She is gaining weight, eating, and keeping her parents up at night just like she is supposed to do. We will add another update after her appointment with the cardiologist (the end of July).

Thanks,

Jay

Wednesday, July 7, 2004 5:40 PM CDT

We met with Dr. Johns today (the cardiologist). Allow me to quote him as he reported on Kennedy's progress, "she's doing better than I could have ever imagined!" PRAISE GOD!!!! Wow! We love to get these types of reports. He even said that if she keeps doing as well as she is that she probably will not need the balloon procedure. Her pace maker is looking and working great. Everything about this appointment was positive. Thank you all for your continued prayers. We go back to the cardiologist at the end of the month.

Tuesday, July 6, 2004 12:49 AM CDT

Kennedy went to see Dr. Heil (pediatrician) this morning. She is doing great. She has regained her birth weight. Everything else was just non-eventful; she's a normal baby girl. She continues to receive very positive reports from her doctors. We will go tomorrow to see Dr. Johns (Cardiologist).

Thursday, July 1, 2004 9:45 PM CDT

Psalm 118:24 This is the day which the Lord has made; Let us rejoice and be glad in it.

WOW!!! We are home. As we drove home today I felt like there should be a parade or something. As we pulled down the street with Kennedy Grace we saw Madison and Morgan jumping up and down in the driveway. They were singing (or screaming), "Mommy, Daddy, and Kennedy Grace are home." I can't begin to describe how great it felt to have our entire family home this evening.

The girls assisted with giving their new sister a bath. They also helped prepare her bed for her. They were a bit disappointed when they found out that Kennedy would not be sleeping in their room.

I could go on forever describing these special moments. Instead, I will fill you in on what is to happen from this point. Kennedy gets to meat her pediatrician next Tuesday (we are so thankful for Dr. Heil). She goes back to the cardiologist next Wednesday. The cardiologist will check her pace maker and her oxygen level. They are still planning to do the balloon surgery sometime in the next month.

We love you all!!!!!

Jay

Wednesday, June 30, 2004 4:14 PM CDT

I'm sorry about the delay in getting this update posted. We just now got to see the cardiologist. Two words - "PRAISE GOD!" Kennedy Grace is set to go home tomorrow. As I type this update it seems impossible to relay how excited we are with this news. We felt many weeks ago that we needed to put our faith in God regarding this situation. Now look where we are at - we are taking our baby home exactly one week after she was born. Thank You, Lord!!!!!

This is a huge milestone for Kennedy Grace, but it is not the end of the battle. The doctor says that she will still need to balloon procedure at some point in the next month or so. He also says that she will need open-heart surgery to repair a hole in her heart. He said that the open-heart surgery would be around 3 or 4 years of age.

We continue to trust the Lord with Kennedy's life and her healing. May God get all of the Glory for what you have seen in her life!!!

We will keep this website up so that you can continue to monitor Kennedy's progress. For the next two months we will try to update things on a weekly basis unless a more urgent prayer request arises. At some point, we will back off the updates until a major prayer request is needed.

Many of you have been receiving the email updates. We will not be sending those out any longer unless there is a major prayer request that we need to get out. Please bookmark this web page so that you can check the updates on your own.

Thank you all for caring about our family.

Tuesday, June 29, 2004 2:33 PM CDT

Kennedy continues to do great. They have stopped giving her fluids and nutrients through her IV. This means that she is getting all of her fluids and nutrients through her feedings. That is a GREAT sign! WOW!

Today was a day of firsts.

**Kennedy was taken off of all machines
**Kennedy was allowed to nurse (and she did great) YEAH!!!!
**Kennedy was allowed to put clothes on today. Daddy got to dress her. :-)
**Madison and Morgan both got to hold their baby sister for the first time (Check out the photo album for pictures).
**Kennedy met one set of her grandparents today

The doctors continue to be very please with her progress. It is great to hear them use words like "wonderful" and "fantastic." They did an echo on Kennedy just a few moments ago. The cardiologist will look at these pictures to determine whether to do the balloon procedure tomorrow or to put it off until after we leave the hospital.

They are still talking about us going home in the next couple of days! We are so excited about taking Kennedy home soon.

We will post another update later tonight after we talk to the cardiologist.

Thanks,

Jay

Monday, June 28, 2004 12:06 AM CDT

Update on Kennedy Grace:

Today is Monday and the word is good. Kennedy is doing great. In the doctors word "fantastic!"

Babies have something called a "ductus (for all you doctors, please forgive my spelling)." It is an opening that helps babies get oxygen to their lungs within the first few days after they are born. This is one of the main things that the doctors have been monitoring on Kennedy. The thought has been that when this closed up, her body oxygen level would fall below an acceptable range. This would require them to do the balloon treatment discussed in an earlier update.

Kennedy has maintained a great oxygen level (in the 90's). Anything in the high 70's is acceptable, 80's are good, and 90’s are great. Last night Kennedy's oxygen level dropped into the low 80's. Even though this was still in the good range, the nurse called the cardiologist. They performed an echo and found that Kennedy's ductus was almost completely closed. THIS WAS GREAT NEWS!!! Her ductus was almost closed and her oxygen level did not fall nearly as low as was anticipated. Given this development, the doctors have let Kennedy eat for the first time. If she does well, they are talking about letting her go home this week. WOW!

They still think that they will need to do the balloon procedure; however, if all goes well they will do this procedure sometime in the next month instead of Wednesday.

The cardiologists are going to increase Kennedy's heart rate to 120 bpm today. They believe that her body has adjusted well and that this will not be a problem for her.

On a side note, Kennedy passed her hearing test with flying colors. That is important for several different reasons. One, I have the paper that says she can hear. I am planning on having it laminated so that I can show her when she's older. I see the conversation going something like this, "KENNEDY!!! I know you can hear me - I have a paper to prove it!" This hearing test is also important because it is a test that they give babies when they think they will be leaving the hospital within the next couple of days. :-)

We will keep you posted as we get more information.

Thank you so much for all of the prayers and support.

Jay

Saturday, June 26, 2004 3:03 PM CDT

Kennedy is now off of the ventalator. She is doing great. They continue to monitor her progress.

We've moved!!! They have moved Kennedy to another room within the ICU. We are not sure why, but we are confident that she is still in very capable hands.

We will update this page again tomorrow.

Saturday, June 26, 2004 12:09 AM CDT

Just a quick update to let you know that Kennedy did fine last night. They inserted a tube into her stomach to keep it empty while all of her stomach organs settled back into place. Thay have consitently reduced the support that she is getting from the ventalator. She should be off of it by this afternoon. I will post an update tonight and another sometime tomorrow. The plan is to post an update at least once a day as we receive new information.

Friday, June 25, 2004 4:00 PM CDT

Kennedy is out of surgery now. To quote the doctor, the surgery went "as smooth as possible." Kennedy is doing fine. We should be able to see her within the next 30 minutes.

I also spoke with Dr Liske, who said the he is VERY pleased with how Kennedy is doing.

Thanks for all of your prayers,

Jay

Friday, June 25, 2004 2:17 PM CDT

Prayer Update 6/25/04 2:17pm

I just spoke with Jay and at 2:17 the doctors had arrived to wheel baby
Kennedy into surgery. He said it would be at least 3 hours before we
hear
any further news.

Sooo... Keep praying!

Blessings

Friday, June 25, 2004 2:06 PM CDT

Just a quick note to let everyone know that they just now came and got Kennedy. Her surgery will start in about 20 minutes. We will try to get an update put on the website by 6pm.

Friday, June 25, 2004 9:20 AM CDT

I just spoke with the Cardiologist (Dr Christian). She filled me in on the game plan for now. Kennedy will go into surgery today around 1pm. She will receive a single chamber (Ventricle) pace maker. Next week, they plan on doing the balloon surgery to open up her Pulmonary Valve. At some point they will have to go in and correct some veins that do not go to the correct place.

They also mentioned today that Kennedy has a hole in her heart that would require open-heart surgery to fix. They did not give a time frame on when this surgery would take place but did say that it would be after the pace maker and the Pulmonary Valve issues are resolved. We are praying that this will be just another opportunity for God to show Himself.

Yesterday was a tremendous day. When I arrived at the operating room yesterday it was so crowded with equipment and people (16 doctors, nurses, staff). When Kennedy came out screaming and doing so well it felt great. I was so happy to see over half of the people in the room leave without ever having to do any work. It was also nice to see all of that equipment not have to be used. The doctors were amazed at how well Kennedy did yesterday. Praise God!

Today Kennedy is still functioning on her own. She is hooked up to several machines but only so the nurses can monitor her. We thank God for ALL that he has done for our family. His presence has been felt all around this situation. Please continue to pray. Thank you so much for all of the encouraging thoughts and prayers left on the guest book, they mean so much to our family.

Always remember, it is often the doctors job to tell us the worse possible scenario but God is in control and what he says - goes!!!!

We love you,

Jay

Thursday, June 24, 2004 9:14 PM CDT

I just spoke with Jay and he said that they met with the cardiologist this evening and they are planning on doing surgery and inserting a permanent pace maker in baby Kennedy tomorrow morning. The operation will either
be at 8 or 12 in the morning. Please note, this is not an emergency surgery, the doctors would just like to get this in place before dealing with the other heart issues.

Praise report - the tricuspid valve (which had not been growing) is now completely fine. In addition, the doctors reiterated how very pleased they are with how baby Kennedy is doing.

Rose is also doing well, and has now been wheeled down for her first visit with the baby.

Thank you all for your continued prayers.

Please check the website for further updates:
http://www.caringbridge.org/tn/kennedygrace/

Blessings.

Thursday, June 24, 2004 2:36 PM CDT

We have not been given much information. We know that Kennedy Grace surprised the doctors. She is doing great! The plan is for the Cardiologists to take the next day or two in order to determine the best game plan. Her Apgar score was 7.8 (anything above 7 is good). We will update this site as we are given more information.

Rose is doing fine. She is hungry (she keeps mentioning the Pancake Pantry). We are hoping that she will get to go see Kennedy in the next hour or two.

Kennedy has been moved to Vanderbilt Children's Hospital. She is in the NICU unit. Rose is at Vanderbilt Hospital East Wing.

Check back for more news and pictures.

Thank you to all those who have been so faithful to our family during these times. We love you all.

Jay

Thursday, June 24, 2004 2:20 PM CDT

This is an update for all who have been standing with this family in
prayer through their tough journey. Kennedy Grace Tippens was born just
a little while ago & according to the doctors is doing great! Rose is
also doing well. For the latest updates on Kennedy visit the hospital
website below:

http://www.caringbridge.org/tn/kennedygrace/

Thank you everyone for praying with Jay & Rose Tippens. This is a
wonderful answer to our prayers. Please continue to hold them before our
Father.

Tuesday, June 22, 2004

CORRECTION!!!

The NICU waiting room is on the 4th Floor of Vanderbilt Hospital - NOT
the
Children's Hospital. This is also the Labor and Delivery floor.

Sorry for the confusion.

Tuesday, June 22, 2004

Hello all.

Several of you have asked if you can come to the hospital and pray on
Thursday morning during Kennedy Grace's delivery. Jay has spoken with
the
hospital and they have recommended a room where friends and family can
gather. So, if you would like to come and pray please come to the NICU
waiting room on the 4th floor at Vanderbilt Children's Hospital.

Rose will check in around 8am, and the c-section is scheduled for 10am.
Please come pray as you are able.

Blessings.

Monday, June 21, 2004

Greetings All,

The week has finally arrived. We are now just three days away from our scheduled C-section. Rose and I just came from our last doctors appointment before the delivery. We met today with Dr. Bennett at Maternal Fetal Medicine. The report was good. Kennedy's Heart Rate was 53bpm. She did a great job showing that she was practicing breathing (I'm sure this was helped by the KrispyKreme donut that Rose had right before the appointment). They also mentioned that Kennedy showed good signs of fine motor movements by moving her hands and fingers. Dr Bennett was excited about the progress that has been made.

In order to keep you better informed as the events start unfolding on Thursday, we have created a website. Many of you have told us that you have friends, relatives, or church members praying for Kennedy. Please pass this site along to them. We will be updating this site with new developments and pictures as things unfold over the next few weeks. We will still send the email updates out as long as we feel it is necessary. The URL is: http://www.caringbridge.org/tn/kennedygrace/. We would love to know who has been praying for us so please take a minute to sign the guest book.

Thanks,

Jay

Thursday, June 17, 2004

Rose had an appointment at Maternal Fetal Medicine today. Everything looked good. Kennedy was given an "A" by the doctor. We will have one more appointment before the delivery next Thursday. We come back to Maternal Fetal Medicine on Monday.

Friday, June 11, 2004

Greetings all,

It's been a week since our last update and some of the plans have changed. To begin with, we will now be delivering at Vanderbilt Labor and Delivery (not the Children's hospital). The Pediatric Cardiologists will have the heart equipment on hand in case a pace maker is needed right away.

The babies heart rate fell to 48bpm at one appointment this week. But it was at 52 bpm today. Overall, the baby is remarkably stable. The Tricupsis valve has grown a little bit (if you remember, this is the valve that was causing concern because it had stopped growing). We still have some veins that don't seem to be going to the correct place. This issue is secondary to the heart rate issue.

Here's the plan as we know it today.

On Thursday (June 24th), we arrive at the hospital at 8am. The c-section is scheduled for 10am. The cardiologist will be on hand in case Kennedy needs immediate surgery on her heart. Dr. Liske will be our main cardiologist. Dr Kavanaugh-McHugh will be his back up in the event that he can't be there. Dr. Fish is going to be the cardiologist who performs the pace maker surgery. Dr Johns is his backup. You can read more about these doctors at http://www.vanderbiltchildrens.com/interior.php?mid=507. For those of you interested in doing more research, Kennedy will be receiving an Epicardial Pacemaker.

Dr. Liske reiterated today that Kennedy's case is so unique that they don't know what will happen on the day that she is delivered. He said that it might be anything from a very easy day to one of the hardest days of our life. He even mentioned that the day could end with Kennedy not surviving. Again, another reason that we are thankful that this situation is in God's hands and not man's.

We will not see the Pediatric Cardiologist again before Kennedy is born. The appointments for the next two weeks will be with the OB and Maternal Fetal Medicine. This is the information that we have at this point. We will send another update towards the end of next week.

Thanks for everything,

Jay

Thursday, June 3, 2004

To all,

It has been awhile since our last update (I can tell because of the calls I'm getting). There has been a flurry of activity over the past week. I don't need to get into all of that so I will just give the latest information that we have.

The Pulmonary Valve is still not contracting correctly. The chamber walls that were growing too thick appear to be more stable at this point. The valve in the heart has that was not growing correctly has now stopped growing. These issues along with the other issues will be addressed via medication and/or surgery once Kennedy is born.

Kennedy's heart rate remains in the 50-58 bpm range. She is growing fine (she was 5 lbs. 9 oz. last week). She also has a head full of hair. There continue to be no signs of highdrops. Everything in looking fine except for her heart.

Speaking of Kennedy being born, we have a date. The scheduled date is Thursday, June 24th (Rose will be 39 weeks along). We will deliver at Vanderbilt Children's Hospital. The plan is for the C-section to happen at 10am. Kennedy is immediately checked by the neonatal doctor. After that there is a line of doctors waiting in case they are needed. They will be prepared to operate immediately if necessary. We don't really know what will happen from that point, as it all depends on how Kennedy is doing when she's born.

Plan B: The backup plan is what we will revert to if Kennedy decides that she wants to come before the 24th. If Rose goes into labor before the 24th, we will page her doctor before we leave for the hospital. That will set into motion a chain of events to get all of the specialist to Vanderbilt asap. In this scenario, we will not have time for our doctor to get all of the equipment over to the Children's Hospital so we will deliver at the main hospital and Kennedy will immediately be taken over to Children's. Rose has a history of short labors so we don't want to deliver before the 24th.

Rose continues to go to the doctor three times a week. We are not getting very much information except when we go to the Pediatric Cardiologist. We will see him again next Friday (June 11). Unless something comes up, we will not send out an update until the end of each week (Friday).

I will never be able to tell you how much your support has meant to Rose and I. The phone calls and emails of encouragement have blessed us more than you know.

Keep Praying!

Thanks,

Jay

Hebrews 11:1 Now faith is being sure of what we hope for and certain of what we do not see.

Hebrews 11:6 And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him.

Friday, May 28, 2004

Jay and Rose met with the pediatric cardiologist this afternoon. Jay
said
that overall things appeared to be more stable than the previous visit
2
weeks ago. The heart rate was at 52 beats per minute and the baby is
growing. However, Jay said that the doctor was concerned that the
heart
valve did not appear to be growing at all, which the doctors had hoped
it
would.

Based on this visit the doctors are planning for a delivery
approximately 2
weeks from today.

As you continue to pray, please pray specifically for the "tricuspid"
heart
valve which goes between 2 chambers of the heart. The slow growth of
this
valve has been attributed to the pulmonary valve, which is not opening
properly.

Thank you for standing with the Tippens family as they walk through
this
season. It is deeply appreciated.

Thursday, May 20, 2004

Greetings,

Rose has had three appointments this week. We left them all with the same conclusion. Kennedy is doing fine. She is growing well (she's a little chunker). The fluid around her heart and the fear of highdrops is gone.

At this point, we need for the baby's heart to remain strong enough to allow her to grow in the womb for a few more weeks. The longer that she can stay in the womb the stronger that she will get. I have had several requests to list exactly what is wrong with the heart so that everyone would know how to pray. Here is the list:

The heart is to large (it is about 52% of the chest cavity). A normal heart should be around 30%. Anything above 50% is considered critically large.
The heart beat is very slow (55bpm). A normal rate is 120 - 160 bpm.
There is a second degree block in the vein that takes blood from the top of the heart to the bottom of the heart.
The Pulmonary Valve is not contracting correctly. This has caused the walls of one of the heart chambers to thicken. It has also caused a valve in the heart to not grow at the rate that it should.

I know that this seems like alot but with God, ALL things are possible.

Please continue to pray for Kennedy and the doctors. There is a team of doctors who are making the decisions on when Kennedy will be born. Pray for wise counsel.

Our next important appointment is next Thursday with the Pediatric Cardiologist.

Thanks for everything,

Jay

Friday, May 14, 2004

Baby Tippens Update 05/14/04

Jay and Rose spoke with their cardiologist today and he, along with a
team
of other cardiologist from Vanderbilt, has decided to not deliver the
baby
next week. They prefer to let the baby continue to grow, at least for
another 2 weeks.

Thank you for your continual prayers. Please keep them up. This will
be a
critical couple of weeks for both Rose and baby Kennedy.

Thursday, May 13, 2004

All,

Rose and I went to see the Pediatric Cardiologist today. The news was not good. The Pulmonary Valve is not contracting correctly. This is causing the walls of one of the heart chambers to thicken. Another side effect is that one of the valves (Tricuspis???) inside the heart is not growing. The thickening of the chamber wall and the small valve could cause that side of the heart to collapse.

The team of Cardiologist from Vanderbilt Children's Hospital are meeting in the morning to decide on whether or they are going to go ahead and take the baby. If they decide to take her, more than likely it will be early next week.

Please pray that God would continue to be in total control of this situation. Throughout this entire process, we have seen time and time again where the doctors showed no hope. Even today, the doctor was amazed that we made it to 33 weeks (he didn't expect us to be anywhere close to this far along).

Other signs that God has touched Kennedy: The fluid around the heart is almost totally gone (less than 1%). The heart is at 52% (of chest capacity). The heart rate is still holding steady in the mid-50s.

As you pray, please remember Rose. She has been exhausted. She has also had some pain and cramps.

Thank you for your prayers. I should here from the pediatric cardiologist late tomorrow afternoon. We will send out an update at that point.

Thanks

Jay

Wednesday, May 5, 2004

Good evening. I spoke with Jay today and he asked me to pass along a
brief
update on baby Kennedy. Rose went to her appointment with the maternal
fetal medicine doctor today. Here's a quick run down:

1. Fluid has increased a little bit around the baby's heart, but not
enough
to concern the doctor. The doctor described it as "insignificant" at
this
point.

2. All other signs were unchanged.

3. Rose will begin having 2 appointments per week, starting next week.

4. Doctors would like for her to reach 39 weeks (she is currently at
32).

Rose and Jay deeply appreciate all your prayers - keep them up. Rose
is
beginning to really feel tired as she heads into the home stretch so
please
keep her personal health and endurance in your prayers.

Tuesday, April 27, 2004

Allow me to start by quoting the doctor when trying to explain Kennedy's progress up to this point. "....you guys must be doing allot of praying. To be honest, I didn't expect you to make it this far. Especially doing as well as you are."

That was fantastic news at the end of our appointment. Here are some of the details. The baby's heart is still about the same size (around 50% of the chest cavity – 30% is normal). The heartbeat was at 55bpm (120 – 160 bpm is normal). The fluid around the heart was still down (he described it as a "sliver" of fluid). He said that there is no reason for us to rush to deliver this baby at this point. If Kennedy keeps doing this well, we are looking at trying to get as close to the delivery date as possible. He also said that at this point we may not have to get a pace maker as soon as she is born. I don't think that he knew what to say - he was truly blown away by how well she was doing.

Prayer concerns: Dr. Liske said that the Pulmonary valve is not opening up like it should. This is something that they could fix after Kennedy is born via surgery or less intrusive procedures.

Our next appointment with Dr. Liske (Pediatric Cardiologist) is on May 13th at 1pm. Rose has an appointment with Dr. Bennett (Maternal Fetal Medicine) next week.

Thank you all so much for your prayers,

Jay

Tuesday, April 20, 2004

Praise God! Great news today. The fluid around Kennedy's heart is almost completely gone. That combined with the news that there are no other signs of highdrops is GREAT news. The heart rate is remaining steady (54 bpm today).

We had Dr. Jeanty give us another ultrasound today (remember, he is not officially one of our doctors). He was amazed. He said that this baby was doing wonderful. It is fun to see the amazement on his face as Kennedy continues to defy all of the odds.

We still have a ways to go before this battle is over, but Rose and I want to thank each and everyone of you for the prayers and support that we have received. The overwhelming response and prayer is humbling. We have received emails from people who we don't even know letting us know that they are praying for us. It is encouraging to read about other stories of survival and God's Grace. We thank all of you for praying for us and baby Kennedy. Our prayer is that she will be a testimony of how prayer can change circumstances.

Our next big appointment is with Dr. Liske next Tuesday. He is the pediatric cardiologist. This is important because he is the one that closely looks at Kennedy's heart. We are specifically praying that the size of the heart would remain steady or be reduced. Also that the heart rate would remain steady or increase. And finally, that the AV block would be gone.

From this point forward we have been told that they will deliver Kennedy at the sign of any trouble. Please pray with us that this baby will "bake" until God is ready for her to come "out of the oven."

Philippians 1:6 Being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.

Thanks,

Jay

Monday, April 12, 2004

Good morning. Jay and Rose met with their maternal fetal medicine
doctor
this morning and received some encouraging news. The baby's heart rate
has
increased to 58 BPM (up from 53). In addition, when they measured the
fluid
around the heart it seems to be decreasing, which is a good sign.

Rose is at 28 1/2 weeks, which is also another good mile stone. The
doctor's would like for her to carry to 30 weeks (or longer).

The next appointment is Friday with the OB. Rose will receive steroids
to
help the baby's lungs and brain develop.

Thanks for your prayers! Keep praying for a complete healing.

Wednesday, April 7, 2004

We went to the doctor today (Dr. Bennett - Maternal Fetal Medicine). The baby's heart rate was at 53 bpm today. It seems to be getting a bit slower every time. The fluid around the baby's heart has increased. It was measured at 6 and today it is at 7.7 (under 3 is normal). Dr. Bennett said that there are no other signs of high-drops (fluid around the baby's other organs or on skin). The doctor told us that the baby is growing normally (in terms of the overall size of the baby). She weighs 2lbs 8oz. and is in the 71 percentile of her age group (28 weeks). We are still at the same place as far as the baby needing to make it as close as she can to term. The doctors are watching for high-drops. If signs of high-drops develop at any time, the decision on whether or not to take the baby will have to be made. They are going to give Rose a dose of steroids next week. This will help the baby's brain and lungs in the event of a premature delivery.

They have moved the hospital that we will deliver at again. Instead of Vanderbilt, we will deliver right in the Vanderbilt Children's Hospital. They believe that this will give the baby the best chance of survival.

All told, we still need a miracle. We have received wonderful thoughts and prayers from people praying for our family (many of them we don't even know). We have been so blessed and encouraged and we are so thankful for all of you. Rose and I believe that God has and is going to continue to touch this baby. We thank all of you for standing with us.

Matthew 17:20

Jay

Thursday, April 1, 2004

Rose went to the doctor this morning. Her doctor had a conference call with 30 cardiologist from Vanderbilt (I didn't even know that they had that many). He said that there was some bickering but the outcome was that they are not considering taking the baby at 30 weeks. The other cardiologist overruled Dr. Liske. They said that this is not a good situation to be in but we need to get the baby as close to term as possible. It is still frightening news but it feels good knowing that we have SO many "experts" looking at this situation.

The bottom line: nothing has changed - Kennedy needs a miracle!

Please pray that Rose and I would hold on to all of the scriptures that have been prayed over us the past few weeks. I am currently holding on to Philippians 4:6-8.

Jay

Tuesday, March 30, 2004

Good afternoon. Jay and Rose had an appointment with their fetal heart doctor this morning. During the visit the doctor measured the baby's heart growth, with regards to how much of the chest cavity it occupies. This measurement showed that the heart has grown from occupying 45% of the chest cavity to 49%. The doctor informed them that if the heart size reached 50% it would be classified as "critically oversized" (30% is normal).

In addition, the baby's heart rate is down to 52 beats per minute (it has been maintaining between 54 and 60 bpm for the past 3 weeks).

These changes continue to put stress on the placenta, and the doctors are now considering an early delivery around 30 weeks (Rose is currently at
26 1/2 weeks).

Needless to say this was a lot of new, and difficult, information for Jay and Rose to process. They ask for your continued prayers. For wisdom in the decisions that need to be made by them and the doctors in the coming weeks. For God's sustaining and healing power for the baby and Rose. For the grace of Jesus to sustain them as they walk through this.

Jay and Rose deeply appreciate you standing with them during this time.

Wednesday, March 24, 2004

Here is the update from our appointments today.

Kennedy is growing normally. She is the exact size that she should be for 26 weeks. The doctors are not seeing any of the negative signs that they seem to be looking for every time. The main thing that they are looking for is highdrops (this is a sign of heart failure). They are also keeping an eye on the size of the heart and the amount of fluid around the heart. Both of these are stable. It is a good sign that we have been stable for so long now (3 or 4 weeks that we know of). The baby's heart is still slow (54bpm) but that is to be expected anythime you have a heart blockage.

I have attached a picture that was taken last week.

Thanks for all of your prayers,

Jay

Tuesday, March 16, 2004

March 16, 2004 Baby Tippens Update:

Jay and Rose met with their maternal fetal medicine doctor yesterday
(Dr.
Bennet). This was a weekly visit, which will alternate with the
cardiologist every other week. The doctor said that the baby is
growing at
the rate and size she should be, and the heart is the same, which is a
good
sign since everything has been the "same" for 3 weeks.

We will send out weekly updates unless there is an urgent prayer
request.

Thank you for your prayers.

Tuesday, March 9, 2004

Baby Tippens Update 3/9/04 (From Jay):

Here's the update after our appointment today. I have separated the report into two sections. One high level explanation and one more detailed explanation of what is going on. Some of you have asked for the straight and simple so that you know what to pray for while others want to know all the technical details and terms. Overall, it was a good appointment. Given that the heart beat is strong (even though it's slow) and that it has been stable over the past couple of weeks, the doctor said that there was reason for "cautious optimism." Our next appointment with this doctor is March 30th.

High level overview: The baby's heart rate is still low (around 58). The baby's heart is still larger than it is supposed to be. Structurally there does not seem to be any major damage to the heart. There may be an issue with the veins that go from the lungs to the heart but we don't know anything for sure yet. There are two major "electrical" problems with the heart. The top chamber is beating at around 115 bpm (beats per minute). It should be around 180 bpm. The other issue is that the top chamber beats two times for every one beat of the bottom chamber. This tells us that there is a blockage in one of the veins in the heart.

Detailed overview: Along with the Dextrocardia Situs Inversus, the baby has Sinus Node Dysfunction and a possible pulmonary vein anomaly. You already know the Dextrocardia Situs Inversus means that the baby is a mirror image of what a "normal" baby should look like. Sinus Node Dysfunction means that the baby's upper chamber heart beat is too slow. It should be around 180 bpm but it is actually around 115 bpm. In addition, the baby has a 2nd degree AV Block. The AV is the valve that takes blood from the upper chambers to the lower chambers of the heart. This blockage causes the top chamber to beat two times for every one time that the bottom chamber beats. The Pulmonary Vessel issue is that the doctor can only see one vein going into the heart right now (there should be four). Although serious, this is not as big a deal as the heart issues.

Thank you for all of your prayers and support. Rose and I really appreciate everything.

Friday, March 5, 2004

Rose and Jay went to meet her new OB this morning. He came highly
recommended and today's visit was primarily a meet and greet visit.
Jay
said that overall it was a good visit, but that it was hard leaving
their
original OB, because she had treated them so well.

During the visit the doctor listened to the heart beat and said that it
was
slow, but strong. The doctor also measured Rose's belly and said that
the
baby is growing at a good rate - not small.

Jay asked that everyone please pray about next Tuesday's visit with
their
heart doctor at Vanderbilt. Dr. Lisk. He is the one who is most
concerned
about the baby. This will be a crucial visit.

That's all the news. Jay and Rose really appreciate all of your
prayers and
support during this time.

Keep praying.

Monday, March 1, 2004

All,

I am sending this email to update you all on where we stand with our miracle baby. Please pass this along to whoever is on your list. Richard Rose is going to be our primary contact as we move forward. After each doctor visit or as anything new comes up, he will send an email to a designated list. If you are a point person, please forward his message to whoever is on your list. I hope this will be the best way to keep everyone up to date with the latest news on this situation.

I found a website that explains more about Dextrocardia with Situs Inversus. If you want to better understand what we are dealing with, please visit this site (http://www.laughs.com.au/sid/ ).

I spoke with Rose's doctor (Dr. Crowe) today and she explained that all of the tests that they took on Rose last week have come back negative. She also explained that we would need to switch doctors because not all of her partners have privileges at Vanderbilt. Since the baby is considered high risk, we will have to deliver at Vanderbilt. If she was out of town, that would leave us scrambling for a doctor at the last minute. She spoke with a doctor who she described as wonderful, and he has agreed to take Rose on as a patient. His name is Dr. Spetalnick.

Important names and dates as prayer points:

Dr. Crowe - She has been such a blessing to us. She is gathering all of the tests from the different specialist to compare notes.
Dr. Spetalnick - Rose's new OBGYN
Dr. Bennett - Maternal Fetal Medicine
Dr. Liske- Pediatric Cardiologist
Dr Jeante - Radiologist (Ultrasound specialist)

March 5th (9:40am) - Our first visit with Dr. Spetalnick.
March 9th (1pm) - Second visit with Dr. Liske (Pediatric Cardiologist). This is an important date for us. The first test was done on the 26th. This test will be 12 days after the first test. That will give us two points. With two points we can make a line. This will tell us if the baby is getting better, worse, or staying the same.
March 16th (10am) - Follow up visit with Dr. Bennett (Maternal Fetal Medicine).

Please pray that we would remember that although these doctors are important, they do not have the final word. Our baby is fearfully and wonderfully made by God.

Thank you all for your prayers and support of our family during this time. Please stand with us as we continue to pray for the medical situations that we are dealing with. May God's awesome power be seen through our baby's situation. To make sure that everyone is up to date, I have provided a list of reports that we have received so far. Please feel free to contact me if you feel the need to do so.

Jay

Thursday, February 26, 2004

Family,

Our visit today did not go as we had hoped. The ultrasound lasted over an hour and a half. The Pediatric Cardiologist found several things wrong. The baby's heart is too big and it is on the right side of her chest instead of the left. There are two "pacemakers" in a heart, the first one is at the top of the heart and it pumps blood down to the second one which is in the middle of the heart. The baby's top pacemaker is beating about 115 bpm (beats per minute). It should be around 160 to 180. The bottom pacemaker is beating around 57 bpm. It should be around 120 - 160. In addition, there is some fluid around the baby's heart. The doctor said that the chance of survival is "slight." He talked about a couple of tests that they could run but they would not give us any information that would help with the baby's health. At this point, Rose and I are praying for a miracle.

The next step is to get the results back from all of the test they they ran on Rose yesterday. We should know something tomorrow or Monday. The doctors say that there is a small chance that Rose has Lupus (the defects in the baby's heart are consistent in what they see from baby's whose mothers have Lupus). They don't think that she does because it would have shown up with Madison or Morgan. If she ends up testing positive for Lupus, they can give her steroids to to speed up the baby's heart. However, this has other ramifications for both Rose and the baby.

We go back to the Pediatric Cardiologist on March 9th to see if anything has changed.

I'll keep you posted as I learn more.

Thanks,

Jay

Thursday, February 26, 2004

I want to take a minute to let you all know what we are going through. As you all know Rose and I are expecting our third baby (it's a girl). We had our ultrasound last week and they noticed something with the baby's heart so they sent us to a specialist. We went to that appointment yesterday and the news seemed to get worse. The baby's heart rate was 58 (normal is anywhere from 110 to 160). The also noticed some fluid around the baby's heart. We have to go today (1pm) to the Pediatric Cardiologist at Vanderbilt. They also mentioned a bunch of test that had to be run on Rose and the baby. It is tough, they throw around words like fluid around the heart, heart blockage, heart failure, pace maker and a number of other frightening terms (I think they forget that there are parents in the room). I hope to know more after today's appointment. I'll keep you posted.

Monday, June 21, 2004 8:50 AM CDT

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