10/14/12 - from AA.com

I probably think too much about what happened a year ago, but I have almost reached our one-year anniversary at home and I think when I get to that point I'll probably stop thinking about all the bad stuff that happened in Sweet Pea's early days. (I hope!)

This morning I woke up thinking "I wonder what was happening one year ago today..." and so I got on my computer and looked at my pictures (I took daily pics in the NICU). What I found reminded me of just how far Sweet Pea has come in her short life! On October 13th Sweet Pea went in for surgery to remove the stricture in her sigmoid colon. Although her hormone issues were found relatively quickly at Dartmouth, this was the one problem that continued to keep us in the NICU. She would have five days of good feeds and then get backed up (literally) and start having problems (spitting up, As & Bs would increase, lethargy would set in, etc.). The docs would stop feeding her (she'd get nutrition through IV fluid and TPN) and start antibiotics, then we'd wait several days until the meds were done and start all over again. This led to multiple infections because she was literally backed up with poop that had no way to exit. The surgeons at Boston found that she had a stricture in a pretty weird place, but determined that they could fix it. The surgery itself was scheduled for 2PM and lasted about three hours (they re-did her central line while she was under anesthesia). It was a very difficult day for everyone.

The night nurse had prepared me for a colostomy - which was an option if they didn't think they could stitch her back together for various reasons. Thank God she did this because I was ready for it, and when Sweet Pea came out of surgery without one it was like a dream come true!

After Sweet Pea was extubated she began having trouble breathing so she was placed on nasal cannula, and when that wasn't enough, re-intubated. The next day she also had seizures due to the difficulty in managing her diabetes insipidus while her body was retaining so much fluid post-surgery. Neuro came and put her on seizure meds which she stayed on for several months until she eventually outgrew the dose.

She swelled up so badly that it was hard to look at her; she did not look like the same adorable baby. I also felt terrible for her because I just knew she was in pain (even though lots of nurses and docs tried to tell me that she wouldn't remember it, like that made it better). Sweet Pea had plenty of blood and platelet transfusions during her 90-day stay and after surgery was no exception. At BCH they allowed friends and family to donate though so Sweet Pea got blood from both a friend of ours and her cousin. By Sunday the 16th we were finally able to hold her again as she was weaned off her pain meds and extubated. It really was amazing how much better she looked as the swelling calmed down; she became herself again! At one point I was holding her and she tooted - her first since surgery - and everyone got excited about it because it meant that things were moving along the way they should be. She was able to start eating again the next day and has never stopped! Every time I look back through these pictures I am reminded of just how far she has come; the resilience of babies is incredible. And thankfully, when she grows up, she will have no recollection of this challenging time in her life!