The NICU Roller Coaster

Thank you for your thoughts / prayers / notes. Sorry it has taken a while to update; we’ve been very busy and haven’t had much time in front of a computer. We appreciate all of your notes and messages; please keep them coming!

Sarah has been home for over a week and is doing well. She has regained some of her activity, and her blood pressure is doing better. The doctor says she is doing fine.

Trey has been our little trooper. They call it the ‘NICU RollerCoaster’, which certainly is an accurate description of how things go. One day we have great news, and the next day we have a setback. He is now at 30 weeks gestation so we still have 10 weeks till his due date, which is also our goal for a discharge date.

The good news: his brain scan came back with no signs of internalbleeding, which is AWESOME news.

He had started being fed and eating 8 times per day, however we have had to temporarily suspend the feeding and go back to IV nutrition till he gets a little better. He was up to 7ml of milk every three hours, and hopefully can return to that soon. He has gained a few ounces, which is headed in the rightdirection!

Not so good news: Trey continues to have problems with his lung function and O2 absorption levels. He has pneumonia, as well as fluid build-up in his lungs. This is partly caused by his ventilator, but the ventilator is necessary for his lung function. The doctors attempted to excavate his ventilator over the weekend, but he just wasn’t ready for that to happen, and they had to re-insert it to assist his breathing. The nurses described his condition as ‘pesky and hard to fight’, but we are still hopeful. From what we read, it is quite common for any child of his gestation level, and is treatable bythe antibiotics he is giving. However, by attempting the excavation,we have gone a few ‘steps back’, and his lungs will need some time to heal. All this will just take time…

Yesterday we learned that in addition to the fluid in his lungs he has fluid in the left cavity of his lung that is preventing expantion of the lung. They did an ultrasound and x-ray to confirm the fluid and then drained the fluid. There are chances that the fluid will re-develop so he is being watched closely. After they drained the fluid he showed immediate signs of improvement, which is great.

In the meantime, we go to the hospital every day, and often twice per day. Vince's mom has been here for a week, and has been a great help around the house and with driving Sarah around. Sarah’s parents, Carrie, and Grammy and PaPa all also visit the hospital several times a week. We certainly make sure that he has a constant stream of visitors!

Lately in the NICU By Trey Rapp
I have been very busy lately. Lots of visitors stop by every day, and I met Mimi for the first time this week, which was very nice. She has been visiting me everyday since she arrived. On Sunday morning the doctors tried to get this yucky tube out of my throat. I know that the ventilator helps me breathe, but I don’t like it and I often chew on it. Anyhow, when the tube was taken out, I didn’t feel so well, so they had to put it back in my throat. Now that it is there again, I am feeling better, but still need a lot of help breathing. Hopefully my lungs will get better soon, but the doctors say we can only takethings day by day.

My brain scan results came back very good. Mommy and Daddy were very concerned about this test. I had no doubt that I will be very smart,but they feel better now that the test came back with good results.

My features are also changing very rapidly since I’ve been born; my ears are much more defined, and my nose shape seems to change daily. I also now have aperfect ‘crew cut’ on my head, just like a Yell Leader. Class of ’33WHOOP!

I know people want to know what they can do to help. Honestly prayers for Trey's continued growth and improvement are best. We also have found that notes of support are great. We are also very thankful for the friends and family who have helped provide meals and gas money for all of our trips back and forth to the hospital. Thanks everyone for all y'alls support and prayers.

All for now…The Rapps

My first week by Trey

My First Week in the NICU By Trey Rapp
Howdy everyone. I had a busy week, filled with many tests and many visitors. Mom and Dad visited everyday. I get to see Memo and Popo alot too. Great Grammy and Papa are also frequent visitors. I was able to meet Auntie Carrie for the first time on Saturday; I can already tell I am going to have fun with her. I know everyone else can't wait to meet me soon.

On Wednesday I had a small heart surgery to fix a valve in my heart, that didn't close before I was born. The proceddure was very quick and has helped me stablize my blood pressure.

On Friday I got a new, more permanent IV called a central tap, which enters my arm and then snakes down my vein to near my heart. This allows thenurses to give me fluids and nourishment. This will also cut down onthe number of times the nurses have to prick me, which I appreciate.

Sunday, I got to take my first few milliliters of breast milk. I was fed via my feeding tube, as my mouth muscles are not yet developed enough to suck on a bottle. I also was given a pacifier for the firsttime, which I liked VERY much. It really helped take the edge off along day…Daddy calls it my ‘Happy Hour’, whatever that means…

I will got weighed for again on Sunday too. The doctors expected me to have lost some weight, as is typical in all children after they are first born. To thier suprise I have gained 2 ounces but they said it could just be fluid. I have also grown another inch. Mommy and Daddy are hoping that I get big and strong quickly, but I am taking my time on that.

My biggest challenge right now is the fluid that has built up in mylungs. This is a fairly typical problem for preemies like me, but it is still serious. The doctors are giving me medication to dry up thefluid, so I hope that works. I’ll get an x-ray later this week which will determine what we do next. Once I get a little more stable, the doctors are also going to try to take my ventilator out. This will let me move around a little more, and maybe even be held by later this week!

Trey has arrived!!!!!!!!!!

Click here to view these pictures larger

Trey has arrived!!!!!!!!!!

A lot has changed this week as you can tell from the title Baby Trey has arrived. The new medication I started on gave me a horrible Migraine and raised my BP Vince left work early, since my sister had come and called the doctor and told us to go straight to the hospital. We spent the next few days being monitored. Thursday I had an ultrasound done and Trey had not grown much in a week and the doppler showed was increased pressure to the baby. Saturday my blood pressure was becoming more elevated and my labs were showing liver kidney failure. That evening we knew that we would be having a baby in the next 24-72 hours. Saturday night I wanted Vince to go home to try to get one more good night of rest. So my sister stayed with me. That evening they started me on an IV called Magnesium sulfate which was to help protects Trey's brain and to keep me from having seizures. I do noit remember much of what happened after this.I was told that night my blood pressure was becoming extremely high and I was having a headache in the back of my head. The nurse was coming in often to monitor my condition. Sunday morning the nurse came in and told my sister and I that I was having Trey that morning that family needed to get to the hospital as quick as they can. Every thing started happening so quick I do not remember Saturday night all the way till Monday afternoon. Trey was born at 8:36am. He was 1 lb and 15 oz and 13 inches long. After having TreyII was moved to ICU for close monitoring of my blood pressure and lab work. I stayed in ICU till monday after lunch. Trey is in the NICU and will continue to fight. We will keep you posted. Thank you for all the prayers and support.

27 weeks

Well we made it through another week :). Un fortunately my Blood pressures have continues to rise. On Monday I was put on strict bedrest and must stay laying down except to eat and shower. I thought staying in bed was hard but laying down constantly is harder. I know this will all be worth it and we want Trey to arrive as healthy and close to term as possible. They have also changed my medication and put me back on the one that gives me migraines, since it seems to be the only one that is working. I started a class on Monday, so hopefully I can get 3 more hours out of the way toward my master's before Trey gets here. Vince is still very busy at work which we are thanful for. He also does an amazing job of caring for me and the house. My sister comes over at lunch most days which helps break up the time. We have our next doctor's appt on Friday.