On Friday, Little Bird's nurse noticed some changes. She was lethargic, and pale, and her belly looked like it was rippling. She also bloated out by 3cm. This was a possible indicator of something called NEC. Necrotizing enterocolitis. Lack of blood flow to the intestines that shuts down a baby's digestive tract, causing infection and perforation of the bowel. They ran cultures, and began a course of antibiotics immediately while awaiting the results. They also paused her feedings.
On Saturday, MFH picked up on something that didn't even occur to me. A few days before all of this began, she bailed thru her milk supply and the hospital asked permission to supplement her with formula until I could get more to her. We agreed. But, all of our kids have had a reaction to milk based products, and I completely missed this before agreeing to it. She'd been given the formula for a little over twenty four hours at this point, enough to cause her body to reject it. That and apparently, me drinking chocolate milk every day to increase pumping was enough to pass thru to her, and her little belly was a lot pissed off about it. By Saturday afternoon, her color was back, and the swelling decreased by nearly a centimeter. Time to rest, to regain her composure. Her labs were due back the next day, so we'd have to wait and see if MFH's instincts were right.
Yesterday, we got the results. No NEC. Tiny victories. But something was still off about her. She was desetting, a lot. She stopped breathing quite a few times, and wasn't able to catch herself. Even the caffeine wasn't helping. Her 02 sats were a lot lower than they should have been. Doc H. ordered more tests. This time, an echo on her heart. They detected a murmur eight days ago, just after they inserted her PICC line and it began to migrate. Though not uncommon for a preemie to have, this particular doctor is the worrywart of the team. And that is a very good thing.
Her echocardiogram revealed something called PDA. Patent Ductus Arteriosus. A vessel in her heart that was supposed to close shortly after birth did not. If you've ever heard about the ability that newborns have where they can be submerged in several feet of water and not drown, this is why. Before birth, the placenta breaths for them. This vessel diverts the flow of blood away from their lungs and out to the rest of their body. Very shortly after birth, it closes on it's own, allowing for that flow to reach her lungs, delivering oxygen to them and enabling her to breath. In her case, it didn't work that way. The key to treating PDA is catching it in time. There is pharmacology to treat it, but the success rate of this decreases after the first seven days. Today is day sixteen.
But we're trying Indocin regardless. There are risks, such as damage to her kidneys. But there are also good reasons to give it, like the possibility of protection against further bleeding in her brain as compared to if they gave her another medicine, which could aggravate that. The lesser of two evils. If medicine doesn't work, the only other available option is a thoracotemy. Surgery. Exactly how that's done on a baby weighing less than two pounds, I don't know, nor do I want to know. We need every single prayer in the world right now. Every. Single. One.
This afternoon, before Little Bird received the first of three scheduled doses of the medication, she had a violent apnea episode which landed her back on the ventilator. Reintubated, and her feeds have since been stopped all together. Her IV fluids have been decreased as well. Extra retention will only compound the problem. For how much I loath that machine, I am grateful that the technology does exist. But she isn't fighting it this time, and that scares me, too. During a blood draw on Saturday evening, she cried so furiously that she passed out. Her body is just not strong enough right now. For the time being, she is sedated and resting as comfortably as she can be. Her nurse keeps assuring us that her letting the machine do the work is a good thing, she needs to rest. But I'd rather see her feisty. It's the only way she tells me that she's okay.
Tomorrow, we meet with her team and wait to see if the intervention does what we are hoping it will. If they'd just let us hold her, just one time, I know she will heal. I know she will. Until then, we need your prayers and positive energy. We pass each message to her everyday. You've gotten us this far. We just need a little bit more.
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