Wednesday Update

Yesterday, Danielle took Alaina to the GI doctor for her checkup. Though we felt things were going very well, it had been a while and we were anxious to get her opinion on Alaina's progress. The good news is that Alaina now weighs 18.7 pounds and is 27 inches "tall" - heavier than Gaby! The other good news is that our scale at home is apparently pretty damn accurate.

This puts Alaina on the charts for her actual age (roughly 11 months), and in the 50th percentile for her adjusted age (roughly 8 months). Considering that neither Danielle nor I are very tall people, this is not too shabby. And considering Alaina had about 40% of her small intestines removed, perhaps nothing short of a miracle.

Alaina's GI specialist is in upper Manhattan at the Morgan Stanley Children's Hospital (New-York Presbyterian). For anyone with knowledge of this hospital, they know this is a place that routinely sees some of the most severe medical cases, with patients often traveling from distant places to get the best care on the planet. And its these doctors that told us (after the fact of course) that Alaina's NEC was one of the worst cases they saw in a long time. They are all slightly shocked at how well Alaina has done, and are very happy with things to say the least.

In addition to the weigh-in, Danielle and Alaina got to say hello to some old friends. Here is Alaina with Clara, who is now a full-time ostomy nurse:

For comparison, here is a picture of the two of them on the day Alaina left the hospital in January. As you can tell, she has come a LONG way:

We always joked that Alaina, with her two complicated ostomies (a jejunostomy and an ileostomy), was worth a few hundred CME (continuing medical education) credits all by herself. The main issue with ostomies is that they are constantly secreting stomach acid, and keeping the skin surrounding them intact can be difficult, particularly for a 3 pound baby. Even with our best efforts, Alaina's tummy was often very raw from the seeping acid that made contact with it.

Here is Alaina's "ostomy roadmap" created by her fantastic surgeon, Dr. Charles Stolar. What he lacks in handwriting skills he more than makes up with surgical technique:

Many of the things used for Alaina were adapted from ostomy products for adults - involving a lot of cutting, folding, pressing and praying. Not to mention the occasional redo. And not just for the nurses. Given that Alaina is a spunky baby, and we had the most experience dealing with her ostomies, all hands were on deck during a bag change. Several times Danielle and I found ourselves pressing a sterile Q-tip against one end of her small intestines to keep it from spewing - all the while coaching a nurse on how to manage her end of the process.

All we needed was a roll of duct tape, a bobby pin, and wad of chewing gum for Richard Dean Anderson to feel right at home with the situation. Richard Dean Anderson, or a plumber.

At the time, Clara was a nurse that also had the most experience with ostomies. She was the unofficial "ostomy nurse." Things were always a lot easier when she was on duty, and even if she wasn't formally covering her, she would make sure to be available for Alaina whenever possible. At a time when our blood pressure was crazy high, the sight of her was always a welcome relief. Now that Clara's formerly unofficial title is now official, I can imagine a lot of parents are breathing easier!

Fiona and Gaby
Totally unrelated, but below is a short video of Gaby and Fiona (slow speed) chasing each other:

So it seems Fiona has a new play pal. Right now she clearly has the upper hand - but little does she know what she has in store for her...