Wednesday, December 26, 2007

Pierce has hit a milestone! He finally after 5 months on TPN has made it to full feeds and is doing well. He is scheduled for reconnection surgery on Jan. 3rd. We are so proud of him.

Lincoln isnt doing very well. He is really struggling with RSV and still on the vent. Hopefully within the next couple days we will see some improvements with him.

Christmas here was ok. The girls were both sad that the boys werent home but glad to see santa went and visited them too. We went to see them for a little while, but the girls couldnt go in to see Pierce. I was too concerned with them being around Lincoln when he first got sick. They did get to peek in and see Pierce though.

After we went over to my great aunts for nothing but crazyness and fighting. Definetely not something I want to repeat again next year. My cousins 4 yr old is no better and even more spoiled and I was not happy with how she treated my girls.

Saturday, December 22, 2007

Lincoln in the Hospital with RSV

This past week I had noticed several more apnea spells than normal but he always brought his sats up. We got his new pulse ox and he was satting well until yesterday. His coloring was off and we decided to take him to see his pedi. Well when we got there he was satting very low and had cyanosis so he was then sent to peds at the childrens hospital. There they confirmed he had RSV and he was really struggling to breathe. They put him on a vent because he was getting weaker and weaker. I feel so horrible and feel I havent protected him enough. He has made trips back to the NICU when I go visit Pierce because I have no one to watch him, nor would I let anyone just watch him while I go see Pierce. Usually I would wait for my husband to get home and we would go together and he would stay in the car with Lincoln while I went in and then we would switch. But there were a few times I took him in. The girls both had been sick and I kept Lincoln away. I just feel so bad because now we will have both boys in the hospital on Christmas which has the girls torn up.

Wednesday, December 19, 2007

More belly issues

Pierce had been doing so well on his feeds and all of a sudden his little belly is swollen again. They didnt see any more NEC but have no ideas why his belly is so swollen yet again. He has been on 12cc every 3 hours and doing fine and then his belly started to swell. They stopped feeds but found it was not NEC or any perforations in his bowels. They restarted them at 6cc and he seems to be doing ok but his belly is a little swollen. So here we go with the belly issues again. I really want him off TPN soon before it starts to harm his liver. It just seems like he is never going to come home.

Sunday, December 16, 2007

Sick Kids and a broken pulse ox

Lincolns pulse ox is broken and i not having one that works has been driving me crazy. His would go off for no reason even when set really low just to test it. It was making me so mad because everytime he would fall asleep the dang thing would go off, if he moved it would go off. I finally just took it off of him because i was tired of hearing the alarm go off. We should have our new one tomorrow. Last night he was having more apneas than usual and just not himself. I bumped his O2 up and he seemed to do a little better but he was definetely not himself.

Then the girls wake up which is unusual. Kennedy woke Madison up cause she wasnt feeling well. Well now Kennedy is sick, sore throat, fever, and a nasty cold. So now I have to keep Lincoln away or he will end up back in PICU. She had no signs of feeling bad earlier yesterday and was around Pierce. So now I am terrified she passed it on to him without knowing it. And Pierce has been doing so well on CPAP. I just hope everything will be ok.

Tuesday, December 11, 2007

Day 5 of cpap

Pierce has been off cpap for almost 5 whole days. He is doing so good with it. Now the question is will he stay on CPAP or eventually tire out and be back on the vent. We have been told that he will need a trach even after weaning off the vent. I dont understand why. I know his lungs are horrible and severely damaged but he is doing so well with CPAP and we are all surprised. His CPAP settings fluctuate between 8 and 9 but he is doing it all on his own which is something that I find truly amazing. His feeds are going well for once and he is so close to getting off TPN. He is at 13cc every 3 hours of 24 cal/oz pregestimil and is back to gaining weight. He is up to 4lbs6oz and doing good. We have his reconnection surgery scheduled for January 4th.

Lincoln is doing really well at home. He is doing better with his reflux and things seem to be going better. He is sleeping alot more and less fussy overall. He loves watching his sisters play and run around the house. They sing to him and read to him and help out with floor time. He gets so upset when its bedtime for them and all the entertainment his sisters give him has to stop. The girls are great with the him and really help out alot.

Kennedy has been really angry lately. We are trying our best to help her in any way possible. I sat down with her and found out one of her major problems. She wants Pierce home and its really bothering her that only one of her brothers is home. When asked what she wants for christmas she tells you Pierce to be home. We know he wont be home by christmas but hopefully soon and without a trach.