Post-Surgery Update

Right after surgery Thursday - completely out of it

Friday - intubated and swollen

I did not take any pictures on Saturday because she just looked awful... she had swelled up quite a bit more.

Sunday - still puffy in the morning, but no longer on the vent and awake

Sunday afternoon in her new hat - thanks Dave and Lianne!

On Monday Caroline started spitting up her full feeds again - the first bottle she spit up was actually with me. The nurse tried feeding her again while I was at lunch but she spit it up too. When I came back from lunch and heard the news I mentioned that every time she starts spitting up she always has an infection. Immediately blood cultures were taken. Because the spitting up had been such a pattern a Barium enema was ordered to look at her lower GI and feeds were stopped.

On Tuesday I arrived at the hospital to find out that Sunday's routine nose culture showed that Caroline was colonizing MRSA - not such a big deal in the long run but it meant that we were moved into an "isolation room" for the duration of out stay. This actually turned out to be a blessing in disguise because it's much quieter in here. I went with Caroline Tuesday afternoon for her GI study and could see for myself the stricture in her sigmoid colon. The surgeon came to visit Tuesday night and said that he thought he could fix it with surgery. By Tuesday we had a positive blood culture showing that Caroline was also fighting an infection of some kind - again.

On Wednesday surgery was scheduled for 2PM on Thursday. Tyler spent some time working on sub plans so that he could get down here that night. After getting stuck in traffic and getting lost he arrived around midnight.

Thursday was a pretty nerve-wrecking day. We kissed Caroline good-bye and she went in for her surgery. The first thing they did was place a new central line so that there was easy access for fluids and meds. Next, they started the colon surgery. The Wednesday night nurse had prepared me for a colostomy. She explained what it would be like to care for it at home and how to clean up the poop. She said that if she told me everything I needed to know then I'd have a better chance of not needing the information. Sure enough, Caroline came out of surgery about 3 hours later with no colostomy. The doctor was able to cut out the section of scar tissue and reconnect the colon. He said that the scar tissue was in a very weird place - he had never seen it there before - and he was not sure if it was due to the NEC she had earlier in her life or if she was just born with it for some reason. We will never know. She came out of surgery completely out of it but extubated. By Thursday night however breathing had become difficult for her and she was placed on a nasal cannula. A couple hours later it continued to be bad so they intubated her again.

On Friday the swelling really began. She looked pretty bad all swollen and intubated. Around 4:45PM Caroline had a seizure that last about 3 minutes. Tyler and the nurse both saw it happen, thank goodness. A lumbar puncture was done to rule out bacterial meningitis. This night was right up there with August 10 as one of the worst nights of my life. I was very relieved when the lab test came back negative but now we wondered why she had the seizure this time as her electrolytes were perfect. Neurology decided that to play it safe we should put her on anti-seizure medication. She was given a super dose Friday night which made her very sleepy. She will continue on this medication until we can rule out any further seizures.

By Saturday she was looking even more swollen - which is why I didn't take any pictures. While she worked on recovering I needed a break from the insanity of the hospital. An old family friend stopped by the hospital with his family to visit and to meet Caroline in the afternoon. (I hadn't seen Hassan since I was in high school!) We had a nice lunch and I enjoyed the break. Saturday night Tyler and I enjoyed a fantastic home-cooked meal with our friends Lianne and Dave. It was exactly what we needed! (Plus we learned that if we ever cook a goose we will have enough fat to last couple years!) Overnight Caroline received another blood transfusion (I believe it was Anna's blood again, but it could have been Dave's as they have both donated for her) which made her feel a lot better.

[As an aside, yesterday Susie, Dennis, and pals went to town at our house! A new freezer and wood boiler were installed and it sounds like Susie did some serious work organizing and cleaning around the house. When Tyler described to me all that had been done I felt so much better about coming home. Between the work they did and the work my sister did last weekend the house will be perfect when we do finally get home!]

By this morning Caroline was doing much, much better. She was slowly weaned off of her pain meds, tylenol and stress dose of cortisol which made breathing a lot easier for her. Because she was breathing in her own they were able to extubate her which meant we could hold her - yay! She is now quite hoarse from the tube but doing a great job of wiggling around in her isolette. Tyler went home this morning but as soon as he left our pediatrician's wife stopped by for a visit (Dr. Moseley is in Boston for a conference) and then Aunt Laura came by with a surprise for Caroline. It was so nice to visit with both ladies...

Every hour Caroline looks better and better. While I was holding her earlier she tooted for the first time since surgery - a great sign! She will continue to shed the fluid in her system and hopefully will start pooping soon. (She hasn't eaten in a week so there won't be much poop - however the surgeon thought she might have a lot of old poop siting around from the blockage.) It sounds like tomorrow she may get to start eating again... very slowly of course. And this time there won't be anything stopping her from eating as much as she wants so that she can grow!

Thank you to everyone for all of your thoughts and prayers. I can't respond to them all but when I get an email or a Facebook message it makes me feel so much better knowing how many people love and support our little peanut.