It’s time to worry, potentially. Gabriel’s direct bilirubin level (the reason why his liver is so sick) rose again, substantially. In fact, the doctor said he had to do a double take not only because the level rose so much, but also because there is no “reason” that it should be rising. Gabriel’s doctor has been working this week to tweak his nutrition in hope that it will help his liver clear out. One of the important functions of the liver is to help the body digest food and grow. Gabriel hasn’t grown in a few weeks…not with real weight and not in length. His body isn’t absorbing the fat from the milk, so now they’re adding “partially digested formula”. Tomorrow morning the doctor ordered another check of Gabe’s bilirubin…just for “curiosity” (the test is typically once a week). If the level continues to rise (and keep rising till this coming monday) then next week will bring about “tests”. If there is an actual problem with his liver, it’s an anatomical problem. According to the doctor, it would need to be fixed by surgery. I asked what that would entail and his response was “it’s very involved…we don’t wanna talk about it unless it’s the reality.” Just when I thought everything was starting to go smoothly… this could be detrimental. Gabriel needs prayers, this isn’t looking good.
Forewarning, I’m feeling jumbled and the following is a reflection of that…
Gabriel’s high flow nasal cannula has been turned down from 6 L to 4 L! This is great progress for a little boy who’s been on a ventilator for a month. He received his three immunizations today because, after all, he is two months old! He has his sixth roommate now. I believe that Gabriel’s roommates have all been paired with us for a reason…but this roommate’s mom only speaks spanish…ummm, I’m not seeing the reason yet! His neighbor, Karli, is very sick. She has NEC. Please pray for her, her twin sister, and her parents. Father, show them mercy. Speaking of, six weeks ago or so I wrote a blog titled NICU Babies and wrote about a little girl named Anne with spina bifida. I saw her grandmother today. Anne died four days after leaving the hospital. A baby in the NICU died yesterday. Please don’t take a pregnancy for granted. I’m scarred from what I’ve been through and what I’ve seen families go through…I’m in awe that any pregnancy can be “normal”.
I’m having a hard time seeing the end of this tunnel…can you tell?