Day 181

Today marks 181 days in the nicu for Pierce and a great milestone was met. He is finally off of cpap and on nasal cannula. We are so proud of him. We also scheduled his surgery for a g-tube for Feb. 11th. Finally it looks like he will be home in the near future

On the bad news I have a household of sick kids.

Sorry for the delay in updating. It has been a crazy month so far. Pierce made it through surgery like a champ and was back on his CPAP machine in no time at all. The day after surgery he had his first poopy diaper. I was so thrilled and excited all over poop! After a week we started seeing abdominal swelling and it had me freaked out. They looked at his tummy and everything looked good from the scan so they stopped feeds and put him back on TPN. The swelling went down and they restarted feeds slower and he did wonderful. Turns out they had started the feeds too fast and Pierce did not like that. Pierce went back on the vent due to another lung infection on January 14th. He finally came back off the vent and onto CPAP of 5 today. He is starting to grow much better now. As of this afternoon he is 6lbs7oz! Before he comes home he will have one more surgery. He will get his g or j tube. They are debating over which one to put in. I am thinking it will end up being a g tube.

Lincoln has been doing great at home. His reflux is finally tolerable most of the time. He pukes on his sisters every once in awhile which grosses them out but they love having their little brother home. He rolled over for the first time last week and has done it several times since. We have a visit on tuesday with the plumonologist. Hopefully he will only need O2 at night. He has been doing very well during the day and especially this weekend. Last night the cat chewed the cannula and somehow made a hole in it. I didnt realize it until his sats dropped but they never got terribly low. He has been on 1/2L during the day and 1L at night. I cant wait to have a wire free baby and hope it is before Pierce comes home.

Reconnection surgery

Well Pierce is currently in surgery to reconnect his bowels. Its been 5 months since his first surgery when we found out he had NEC, where they did the ostomy. He is finally ready to be all reconnected. When he went into surgery I just cried, I am so worried for him. He is back on a ventilator for the procedure. I just hope the outcome of this operation comes out well. He has been doing so well, finally hit 5lbs and was on a CPAP of 5. This is the little boy they said would need a trach because he spent 19 weeks on some sort of ventilation. He is an amazing little boy. Once this operation is over with he has one more before his homecoming which still is unknown at this point in time

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.

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.

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.

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.