Good morning Friends and Family!
Now that we have a little more time, we just wanted to update you in more detail about everything that happened in Lucie's world yesterday.
The day started with me (Drea) seeing that we had a missed call and voicemail from the hospital that came in at midnight! (Cue the heart attack.) The voicemail was from a Resident saying that she had a non-urgent message about Lucie. We called back immediately, because even if you say it's non-urgent, you called at midnight, so it must be important!
We spoke to the Resident and she explained that Lucie had a string of several Brady's (heart rate dropped) in a row, and that even though they were all self-limiting, (where Lucie was able to bring her heart rate back up without any assistance), they were enough to cause some concern. The medical team went into high gear and decided it was time to leave no stone unturned in order to help determine what might be causing these Brady's and Desats (drop in oxygen saturation levels) to be occurring for long periods of time in a row. I was with Lucille pretty much all day, and the Attending explained that Lucie was stumping the doctors because she wasn't behaving exactly as they would expect for a baby who only had a virus. Well, she has never really behaved as expected, she's a 24-Week Micro Preemie Miracle, for crying out loud :)!
They did blood work to test for infection and blood work to test her thyroid levels. While we waited for the results, the Attending let me know that she would also be consulting with the Attendings from the NICU to see if they could help think of anything else to consider that she might be overlooking. The team she spoke with was very familiar with Lucie from her time in the NICU and they felt that it was honestly more than likely just a virus that Lucie caught, and that the extra/ unexpected episodes of Brady's and Desats were very likely due to the fact that her Micro Preemie/ under-developed lungs did not have enough of a reserve to fight it off completely on her own. However, with that being said, the NICU team also suggested doing another head sonogram to see if there might be any changes that could also be to blame for the Brady's and Desats. They thought this was a very unlikely possibility since several of the last head sonos continued to show that her brain bleeds were resolved and her ventricles were less and less dilated, but they were determined to scare the bejeezus out of us and be extremely thorough on their quest.
I asked if they could bring a humidifier into her room or something to help loosen up her congestion. The doctor gave Lucie's lungs a quick listen and agreed that she did have a lot of gunk in there. She told me that they didn't have humidifiers but they could use a nebulizer to mist saline into her face which would help loosen up the congestion tremendously. Every three or four hours they started a routine of Chest Physical Therapy, Nebulizer misting and then good ol' fashioned suction. They were able to loosen up sooooo much disgusting junk from her lungs, she was definitely congested! I started to suspect that her Brady's and Desats were happening because she was so extremely congested and didn't have the strength to cough and loosen it up herself. After they started this routine, she really started to turn around, and since that last incident in the early hours of Friday morning, she hasn't had any major episodes again. She is still having an occasional Brady and desat, particularly when feeding, which is scary, so we're not in the clear yet by any means, but she seems to have turned a corner. It's especially scary because it was just after she was eating on Monday that she had the really bad episode which landed is in the hospital to begin with.
Thankfully, the blood work for the infection has been negative (we have to wait 48 hours to know for sure), her thyroid levels are looking normal and her head sono showed no change, which is great!!! It was kind of funny when the Technician assisting with the head sono was talking to me, he asked if I was a Physician because of the way I was able to speak about Lucie Pie!
Like we mentioned last night, Lucie's IV was taken out yesterday. It infiltrated, so they took it out, making it that much more crucial for her to start to get her appetite back so that she could take her bottles. They said that if she is not able to take enough from the bottles, they will need to put a feeding tube in. Think about times you've had a bad cold, sometimes you have zero appetite, so although we'd hate to see her get a feeding tube put in again, it would help give her the nourishment she needs to regain her strength. Thankfully, so far she seems to have a little increase in her appetite and they have not put the feeding tube in. We're praying this continues to be the case :)!
She had lots and lots of visitors from the NICU yesterday, they all commented on how big she looks and how she really does seem to just be knocked out by a virus. We're hopeful that if she continues to improve and has NO Brady's or Desats anymore, then we might be able to go home by early next week.
As always, thanks for your prayers and incredible support.
We love you,