The Aylagator!

Two months into Ayla's apparent disease onset, I was talking with my neighbor and good friend, Genevieve, about the saga in which we were so entrenched.  I kept viewing Ayla as a frail little thing, easily beaten down by so much as a gentle breeze, and needed to talk with Genevieve about all my anxiety.  She firmly and lovingly redirected my attention to all the fighting that Ayla is actually doing, and that despite her cramps, ulcers, fissures, diarrhea, vomiting, thrush, horrific diaper rashes, torturous drug side effects, etc., she still manages to smile, giggle, play, and, well...THRIVE.  She said, "She fights like an alligator!"  From that point on, my perspective on my daughter shifted dramatically.  This girl refuses to give up.  She's an inspiration!
Thanks to Genevieve for this much needed shift in our experience.  And thanks to Sara Taddo-Jones for the perfect new name for our girl: The Aylagator!!!!  Damn right!!!!

A grueling decision

This past weekend I decided to stop breastfeeding Ayla. I imagined breastfeeding her until the end of time, especially because of her condition, but our most recent situation has made it quite difficult to fulfill that expectation. We came home from the hospital this last Friday after being there for almost a week. She was admitted once she developed a fever and she had been quite sick for about a week. Once in the hospital she stopped nursing completely. This is a nerve-wracking experience since breastfeeding was the only way I could keep her hydrated and somewhat nourished when she feels awful. She then had an NG tube (nasal-gastric tube) put in and we began feeding her Elecare formula through it.

Feeding a person with IBD (Inflamatory Bowel Disease, a broader category which Crohn's and Ulcerative Colitis fall under) an exclusive diet of Elecare has proven a successful treatment in and of itself for many people. So we decided to take Ayla off of breastmilk and feed her only Elecare. I thought I could keep up with pumping so that we could return to breastfeeding once the Elecare diet was over, but I found that after only one day, I wouldn't be able to pull off such an intense demand on top of all the other care that's needed at this point. In essence, we are teathered to Ayla almost constantly because of this NG tube. As of now, she can't handle a big bolus feed (a large amount at once) so we need to feed her at a super slow rate just about all day and all night long to meet her coloric and hydration needs. Consequently, one of us has to follow her at all times, wearing a backpack with the pump and bag in it. Intense, indeed.

The decision to stop breastfeeding is hard enough as it is. It was even harder knowing I would be withdrawing a sense of emotional security and a way to keep her sustained when times get tough. There is yet another component to this decision: many folks with IBD have adopted the Specific Carbohydrate Diet (SCD) and have successfully maintained a state of remission because of it. The diet prohibits the intake of grains, sugar, and lactose. While I realize that breast is best under normal circumstances, I have suspected for quite some time that Ayla may possibly be harmed by something in my breastmilk. I do not know this to be true. But I don't really KNOW anything to be true at this point. We're in a constant state of speculation. But since so many folks are thriving on the SCD, and Ayla keeps falling ill while obtaining most of her calories from lactose-laden breastmilk, I felt it was best to make this sacrifice, no matter how hard the decision is. Thus far (and it's only a few days in), she's doing quite well. Each day she seems to be feeling a little better, and she's coping very well with the lack of boobie comfort. Thankfully babies are incredibly adaptable!!!!

A tribute to Ayla

I have decided that this blog is essential for several reasons: it is therapeutic for me to journal this experience; it's imperative that both my children can look back and see the progression of likely one of the biggest factors in the shaping of their lives; it's a way to update our family and friends of recent events; and I am realizing how much I want to give back to the IBD community (so much of my sense of understanding and relief has come from reading other's accounts of living with IBD).

Our one-year-old daughter, Ayla, has a working diagnosis of Infantile Crohn's Disease. At 6 months of age she started getting really sick: crying while stooling, followed by blood in her stool, loss of appetite, weight loss, and ulcers in her mouth. Since this time she has been hospitalized 4 times, has had 4 endoscopies, 1 spinal tap, 2 NG tubes, 1 blood transfusion, several x-rays, 1 porta-cath, and has undergone an arsenal of exams/treatments/medications. We believe she has not been in remission since initially becoming ill but she has surfaced on occassion and, at those times, she shines like the sun. We're working diligently on getting her healed as quickly as possible and keeping her there as long as we can.