Well, to put it bluntly, today was not easy. Lila didn’t necessarily have a BAD day, but it wasn’t the best either. Jon and I are both starting to feel the effects this week has had on us, and are just hoping that we’re on the other side of this.

When we arrived at the hospital (after an hour and a half ride in…thank you Friday Traffic), Lila was sleeping, as usual. We found out almost immediately that she would be having a renal ultrasound today, to check on her kidneys. It seems she isn’t losing fluid as quickly as the doctors would have hoped, so they just wanted to check and make sure everything was all set in that department. This was going to happen sometime in the afternoon. Through talking with her day nurse, Debbie, we found out that her blood pressure was on the high end of the normal range. She wanted to monitor it a little more closely, and do some more bloodwork to make sure her blood count and platelets were where they need to be. It was nothing to be alarmed about, but she just wanted us to know. This could certainly be due to all of the trauma from the past week, and Lila could just need some more time to settle in.

We tried nursing again today for her noon feeding, and probably couldn’t have picked a worse time. As we settled in, and started working on waking her up, two new babies arrived at “our” bay in the NICU. So now we had a full house (all four beds were full), and there was crazy commotion just on the other side of the flimsy curtains we’d pulled for privacy while nursing. One of the babies had been admitted last night, but was coming back from the OR (we’re not sure what for, we try to keep to ourselves there, and give the other families their privacy), so he had a team with him, and had to be attended to as he came out of anesthesia. The other baby arrived from Hartford, so the ambulance team was there, along with the doctors who would be attending to him. Needless to say, it was loud, distracting, and confusing–and that was only to Jon and I. I can’t imagine what Lila thought about all of the noise; as a result, nursing was kind of a lost cause at this point. So we went ahead on her nurse’s recommendation to try to feed her via bottle, before resorting to the GI tube.

Lila was not liking the bottle today AT all. As I was feeding her, she proceeded to spit up most of the milk, along with some blood (this may be TMI for you, sorry…). So we called her NP over immediately (yet another person who was in the bay at the time, assessing the new babies), to determine what to do. There wasn’t a lot of blood at all, but enough to make the NP order a stomach x-ray, to make sure she wasn’t bleeding. Her NP and attending both were not worried about the blood, and said it could be from any number of things–gastritis, her GI tube, old blood from being intubated earlier this week, a possible protein allergy to my milk (now wouldn’t THAT be just terrific). The portable x-ray came up immediately, and within the hour, we knew that it was clear, and there was no bleeding. So that was a good thing, even though it was yet another event that scared Jon and I to death.

Then Lila had her hearing screen, and passed with flying colors. One more thing to cross off our list, yay!

In the late afternoon we went for her renal ultrasound, Jon and I both went with her. She behaved beautifully, barely squirmed at all during the half hour exam. We would find out the results shortly, so went back up to the NICU. A little while later, I came back to her crib to find her attending doctor talking to Jon. The ultrasound came back, and her kidneys looked great. There was no issue with her flow on either side, and the kidneys were working as they should–great news. Then she told us that the ultrasound tech found an adrenal hemmorage on her right kidney–as I went white in the face, she explained that this can happen with babies who have endured the trauma Lila has, and is normal. It is on the adrenal gland that is on top of her kidney, and not on the kidney itself. The ultrasound tech said it looked like it was starting to resolve itself (it will break down and dissolve over time), so we will schedule a follow up ultrasound for next week at some point to monitor it, and make sure it is gone. Again–not necessarily bad news, but goodness, I just couldn’t take any more at this point.

So, today was pretty draining overall. It’s like that old saying, one step forward, two steps back. Every time we think Lila’s cleared another hurdle, a new one pops up. We’re hoping tomorrow is much quieter, and Lila gets a good night’s sleep, so she can have time to heal. We are planning to go back early tomorrow, as we keep hearing she is awake and alert around 8am or so. We’re hoping that we can try nursing at this time, instead of when it’s like Grand Central. And we’re also hoping to spend some of her awake time with her, as her schedule is all out of whack right now, and she’s always sleeping when we’re there (probably due to all the drama going on!).

We’ll leave you with this photo Jon took of her today, we’re getting her ready to play with her cousin Gracie. Cait got them matching hats, that you can see in this pic, and we can’t wait to get some shots of the two of them wearing them together.


It is SO totally bedtime right now. Lila says so.