For those of you who are interested:
1) B's yeast infection has not gone away, but it is under better control than when we found it. Her bum is still quite raw (fluctuates, some days are better or worse than the raw-norm), and it is hard to control the yeast and the normal rash simultaneously. She has to wear a constant thick barrier to protect her skin from her acidic stool, but it creates a wet, warm, dark environment in which the yeast thrives. When we use the anti-fungal ointment, the barrier doesn't stay on. Very Catch 22.
At the moment we are trying a prescription Nystatin powder instead of ointment, and she's gone back on an oral anti-fungal. It's only been two days, so we're waiting for results.
2) Baby B now has 14 teeth. Pre-surgery she had 6, only 6 weeks ago. Some of our sleepless nights have nothing to do with her bum. But check out that awesome smile!
3) Although baby is not rolling regularly, crawling, walking, or weight-bearing, she does roll occasionally... on purpose... by herself. Her incision sites have healed quite deliciously, and although they are long red lines, they don't seem to cause her pain. She still doesn't love tummy-time, but she doesn't scream and cry like she used to do. Mostly she just whines and then rolls onto her back.
We have decided to do an official evaluation to assess her development, since she continues to exhibit a number of delays. Her primary delay is of course gross motor skills, but she also seems a bit slow in the speech category, not that she's exactly quiet.
Her fine motor skills are developing well, and she continues to show obsessive-compulsive tendencies (we like to call her "detail-oriented.") She is bright-eyed, alert, shows no obvious physical abnormalities besides Hirschsprung's, and loves the sound of the noisy, mufflerless motorcycles buzzing down our street. We're glad at least one person in the house perks up at what the rest of us consider an annoyance.
4) Baby still chokes semi-frequently. Not sure what that's all about.
5) Oh those sleepless nights! Initially, Jeff and I wanted to have two kids, back to back. With the events of B's short life, we've had to reconsider our tentative family plan. Right now, I can firmly attest how pleased I am not to have an infant on the horizon. We no longer have much of a sleeping schedule; it is sporadic at best. We do occasionally get a good night's sleep. And then again, occasionally we don't.
On Saturday night, Bridgette was in a constant state of pain and was either awake and crying or "asleep" and moaning. Her best sleep was Sunday morning between 2-6 a.m. At 9 a.m., this is how we found her in her high-chair. Those bananas made a right-cushy head rest for our dear little lamb!
6) Baby is 29" long and 22.6 lbs. That puts her at 50% height and 60% weight. This is good news! She lost a couple of pounds in the hospital, but she's gaining weight like a champ again, despite not eating as much as before. Her menu has expanded to include a few more items, although her diet is still quite restricted.
7) The lengthy changing-ritual and frequent diaper-changes makes it hard to take her anywhere for an extended period of time, but we're doing a bit better at getting out. One of our favorite outtings is to the park for some frisbee hauls with our awesome dogs. We make a great pack. They are super athletic.
8) Here is the list of remedies we've tried for her bum, in a considerable number of combinations:
Bath with chamomile tea
Bath with oatmeal
Bath with apple-cider vinegar
Hair-dryer on cool
Baby powder (corn starch, very bad)
Baby powder (talc)
Night-time Desitin (our favorite)
Dr. Smith's Diaper Ointment
Nystatin liquid suspension
Probiotics (acidophilus, L. Bifidus, etc.)
Cleanse, wet paper towels (no wipes, even the gentle ones hurt)
Our current favorite mix is oral probiotics and Diflucan suspension with the following layering technique at diaper changes:
At night we alter the system slightly:
We have also been in touch with a mom who raised two Total Colon HD boys, and she suggested mixing Desitin with Karaya powder to make a gummy paste. She said it saved her, so we've ordered some, but it's currently on back-order. We'll be sure to post when we find the "perfect" solution for us!