The whole “two steps forward, one step back” cliché is never more true than in the NICU. Today, Annaleigh is the epitome of that expression.
During their rounds, the doctors decided that Annaleigh has been doing so well lately that she deserved a “promotion” from BiPAP (Bi-level Positive Airway Pressure) to CPAP (Continuous Positive Airway Pressure). This change is huge! Basically, it means that the oxygen that is being given to her through the tubes in her nose is no longer being pumped into her lungs because she’s breathing well enough on her own that she doesn’t need any help. The tubes simply bring the oxygen closer to where it needs to be so it’s a little easier for her to get the air she needs. Preemie lungs are usually very under-developed and need help inflating and deflating; Charlie and Lily both need the respirators to do that for them all the time. The BiPAP does some of the inflating/deflating and the baby does the rest of the work. Now, Annaleigh has been so consistently strong that she’s on CPAP and doing all of the inflating/deflating completely on her own. The fact that her lungs are strong enough at this early point to only need the CPAP is a sign that she’s doing really well. The picture above is the CPAP machine-- it looks like something out of a high school science experiment!
But then there is the step backwards. After one of her early feedings, Annaleigh coughed up a lot of her breast milk, which prompted the doctors to look at her stomach again. It has been over a week since Annaleigh has had any lingering effects from her belly infection, but that doesn’t necessarily mean that her GI tract is healthy, and that’s what the doctors were worried about. So they did an x-ray and saw some black spots in her intestines, which they say is probably blockages that are preventing things from working as they should. Since she’s not pooping with any regularity, they’re concerned as to why this is happening. So first they gave her—get ready for the ugliest concept known to man—an enema (yuck) and suppositories (also yuck), which didn’t have much of an effect. She was getting a blood transfusion (thanks Grandma Pam!) this evening and her nurse thinks that the combination of things (plus stopping her feedings for a while) will cause an improvement. If not, our poor little monkey will have a second enema tomorrow. Joy.
So her lungs are great but her GI needs a boost.
And then there’s Charlie. Our Chunky Charlie continues to eat circles around his sisters and he seems to get noticeably bigger every day. In fact, he’s doing so well with his food that he is no longer getting any iv supplements! All of his nutrition is coming from his mommy’s breast milk! So right now (and for the foreseeable future) the only iv in his body is for the MRSA medicine and blood transfusions (that seems like a lot but there are days when one of the babies has a needle in both arms and both legs). However, some of his blood work came back with a bit of a concern today—nothing major, but enough to get a response from the doctor. His H and H levels (Hemoglobin and Hematocrit, which is a standard blood test they do almost daily on each baby) are too low, which wouldn’t be a big concern if he were a bit more stable with his breathing, but because he desats a lot there is potential for the two “minor” issues to cause a problem. So he’s getting some of Grandma Pam’s blood tonight and they’ve “cut back” on his feedings from 13 ml to 10 ml for the rest of the night (we had to assure our little porker that they would increase his meals back up tomorrow—he was worried).
Lily was actually the one with the fewest issues today. What a change! She’s still having lots of episodes, which keeps her nurses on their toes. Her feedings are solid at 4 ml every three hours and she is always active when we visit. She opens her eyes more than her siblings and she’s always kicking her legs and flailing her arms all around—she likes to put on a show for us!
Tomorrow will bring a second round of brain ultrasounds for all three babies. The ultrasounds are routine for Charlie and Lily—all preemie’s have them at one week and three weeks (and then again before they go home). Annaleigh had the slight bleed in her brain when they did the first ultrasound a couple weeks ago so they’re checking to see that the clot has broken up and started going away. We’ll also be watching her stomach to see how she’s making out after the fun today, and how she’s doing on the CPAP. We’ll be paying close attention to Charlie’s blood work and feeding schedule, and, as always, we’ll fret about Lily’s episodes. So it will be another busy day tomorrow with a number of important events to keep us nice and worried. The NICU fun never stops!