Health Updates for Andre Nisly
for January 16-22, 2005

Congratulations to Jon & April Nisly
for their son born Tuesday, January 4, 2005
1-16-05 8:00am - Jon

Our baby has clothes on. Yes, he has been in only a diaper since he was born. Last evening they but our clothes on him and they also gave him his first real bath. His 6:00 feeding (with bottle) went much better. His 10:30 feeding went even better. He is now receiving 18ml/hour through his NG tube and 10ml every 3 hours from the bottle. He is not very hungry so it makes it even more of a challenge to get him interested in a bottle. We are allowed to hold him and have only 4 cords and lines to watch.
People have been asking whether the other children have been here in Kansas City. Tristan was here last Saturday and Sunday. Yesterday, Tana. came up with Molly and Merlin. She was disappointed that she did not get to hold her new brother but she was very excited to see him and us. April told her that she is getting so big and she said, "I know and the boys are getting big too." It was nice to see her again. Corby will probably be coming this week sometime.
1-17-05 7:30pm - Jon

Andre had an exhausting day. Drinking a bottle really makes him tired. This morning the Dr. told us they will take out his PIC line and then asked April if she would like to try to nurse him. She tried it and he did really well. He simply cannot stay awake. They said it is not uncommon for babies born early to have a hard time to stay awake during feedings. They continue to feed him through the NG tube every 3 hours. April did not try to nurse at 6:00 PM to see if he would stay awake longer at the 9:00 feeding. The Dr. also indicated that we “could” be going home sometime this week. Andre has to be able to sit in his car seat for 4 hours with monitors to see if he could make the trip home. The Dr. asked that this be done today. I don’t think they got it done but at least we are looking at a possible discharge date.

Grandma and Grandpa brought Corby up today. He could not get done hugging his Dad and Mom. It was nice to see him again. Corby is quite proud of his little brother. Yes, he did rub Andre’s head.
Jon
1-18-05 3:00pm - Jon

Andre has moved. Not home yet but he was moved to another floor. He is still in ICU but it is another step in the right direction. Feedings continue to improve and at 12:00 (noon) they did not feed at all through the NG tube. This morning he stayed awake for almost an hour. The car seat monitor has not happened yet. But hopefully today or tonight. We had to take a CPR class before we can take him home so we did that on Sunday. We are hoping to be home by the weekend. It just depends on how he does with his feeding. He will keep his NG tube until he is eating all day by himself.
1-19-05 9:30am - Jon

Andre is now 2 weeks old. Eating continues to wear him out. He is eating well at every other feeding. He just can't seem to wake up every 3 hours. Since we moved to 2nd floor we realize how nice it was on 3rd floor. He is still considered to be in NICU but the unit was full and so he was moved. It is OK but we have very little privacy and it is just not the same. Most of the nurses are truly angels. One nurse brought in a sleeper she bought for him. She said she was out shopping and saw this sleeper and thought of little Andre. I can't imagine she can do this for every baby she cares for so it makes us feel pretty special. Maybe it's because Andre is just so cute. (The nurses think he looks like his dad :)
Our car seat was outdated so we got another one and we are waiting for them to do his 4 hour monitor test. Until yesterday I thought a car seat was just a car seat but trust me they are not all the same. The car seat has to meet a list of specifications before we are allowed to take him home. We are trying to find out all we have to do before we are discharged so we will be ready to go when he is eating well. It can be a little frustrating but as most of you know I am not the most patient person around.
Yesterday when I picked up the mail someone remarked about all the mail we had and said, "Somebody loves you guys!" We do feel loved and are grateful for all your support. Thanks for all your cards, emails, visits, prayers, and gifts. Jon
1-20-05 3:00pm - Jon

We moved again. Andre got his own room. For those that have been here he is now in the Hanson Tower on the second floor. April will be spending the night with him. Feeding has been fair at best. He lost weight yesterday so they started feeding through his NG tube last night. Today they have been bottle feeding him until he falls asleep. Whatever is left, they feed through the NG tube. He is staying awake for about 20ml to 30 ml of the required 50ml. The therapists continue to tell us he is doing fine and progressing as fast as can be expected. I am not sure we are going to make it out of here this week or not. Things can change so quickly and we do not want to rush him out of here before he is ready. The last couple of days have seemed like they might be about 40 or 50 hours long. We miss everyone at home and are ready to get home. Yesterday was the first time April and I got away from the hospital/Ronald McDonald house. We filled the van with gas and stopped at Wendy's for lunch. It was nice but it is hard to leave the hospital because you never know when they may need to talk with us. The food at the hospital actually has been pretty good. We also have a meal brought in here at the house every evening. It is not like eating at home but we are not suffering from lack of food. Continue praying for us. Jon
1-22-05 2:00pm - Jon

This morning when Dr. St. Peter came in to see Andre, April asked if we could take him home with the NG (stent) in place. He said, "Sure, why not?You're taking care of him here anyway. The nurse are only supervising his care. Let's try and get you out by Monday." We still aren't holding our breaths because it seems people can change there minds quickly around here. He continues to take part of his feedings by mouth and the rest through the NG. He cries very little and is a very content young man. He has gained back the weight he lost a couple of days ago. Jon

1-22-05 6:30pm - Jon

Sorry I did not update yesterday. I was unable to get to a computer. Not much has changed. They did the car seat test yesterday and Andre passed. He had to sit in the car seat for 4 hours. The "car seat nurse" watched his monitors to make sure he would be able to ride home. He is still only eating about 3/4th's of his feedings. He has woke up several times before it was time to feed him but simply can not stay awake long enough to get all of his 50ml/3 hours. We asked if we can give him 25ml every 1.5 hours and they said sure. But that did not seem to help much. Dr. St. Peter stopped by yesterday and seemed pleased with the progress Andre has made. He said Andre is doing better then expected. It was nice to hear that but it doesn't change the fact that we would like to go home.
Thursday evening I overheard a couple here at the Ronald McDonald house talking about going home next Tuesday. I asked them how long they had been her and they said 5 months. We have been here only 2 weeks. It is hard to be patient so continue to pray.