There’s a look that I see on pretty much every NICU parent's face when we go to the hospital. It’s a mixture of exhaustion, worry, relief, sadness, and maybe a slight attempt of optimism. My heart breaks when I see those vacant expressions, and then I realize they probably see the same look in our faces too. It’s been a hard season, friends. As you know, the last several weeks have been filled with a lot of waiting for test results.
The first major test, was a barium study to look at Felicity’s intestines. The team wanted to make sure that there were no issues so that she could start feeding again. Thankfully after nearly two weeks of no feeds, the study came back normal and she got to start back very slowly, at a rate of about 1 teaspoon of breastmilk every three hours. That has progressed over the past week and a half to where she is now on 100% regular feeds instead of TPN, (a concoction of all the nutrition she’d receive via IV that kind of looked like yellow gatorade).
We were also waiting on Felicity's follow up echo, to see how her heart has been recovering after the infection, as well as the hormone level studies to determine if she did in fact have the genetic disorder.
In the findings from the first echo they performed after we last posted, they found that Felicity had a large PDA in her heart (an opening that is there when babies are in utero, but should close after birth) which was impacting her breathing a little bit. They also found that the bacteria from the infection had not started to shrink yet. This bacterial growth is called a vegetation. Felicity has two vegetations on her heart valves which are causing them to function poorly. The first step was to try to close the PDA, after a five day course of medication they were able to see in the next echo that there had been dramatic improvement in the PDA, which was great!! Unfortunately they found that the vegetation remained the same yet again, and was actually causing the valves to leak blood flow in the wrong direction. This is really concerning to the doctors. On the outside, Felicity is doing so well... she’s tolerating her feeds and is even able to come off of all respiratory support for up to four hours a day. She is not showing signs of heart failure or heart disease yet, however, if her valves don’t start to function properly again, she could be looking at major heart surgery. At this time, the team is going to complete the final two weeks of the 6-week course of antibiotics, and perform the weekly echos to watch for signs of improvement. Depending on how things look, they may decide a few more weeks of antibiotics is all that is needed, or that potentially surgery is needed. We are praying that the vegetations will shrink with the antibiotics and that these leaks will resolve on their own, or at least improve, so that they will not require surgery. She’s much too little for this type of surgery so if things don’t improve this could even mean her being required to stay in the hospital until she’s big enough for the surgery. Which could be months.
When it rains it pours... the same day we learned all of this, the endocrinology team came to update us about Felicity’s hormone levels.
They told us what we were expecting, but what we were hoping would not be the case. Felicity does have a genetic hormone disorder that is affecting her ability to produce enough cortisol. There’s a lot more to it than that, but we’re still learning about it. The team needs to run additional tests (shocker, I know! lol) because she is borderline between two classifications of the disorder. They will need additional bloodwork and genetic testing in order to identify it precisely. Either one is treatable with steroids but it’s the difference between only needing to receive steroids occasionally if she has the less severe form, or needing steroids up to 3x a day for life plus extra doses when she gets sick if she has the more severe form. Cortisol is essential for the body when fighting any sickness, so things can get complicated rather quickly if the right treatment isn’t given. For now she is receiving treatment as if she has the more severe form of the disorder while we wait for all the results to come in which could take 2-3 weeks. Since this is genetic, it means that Felicity would have been impacted by this regardless of the fact that she was born prematurely. Thankfully this is treatable, we’re hopeful to have a better understanding of what her treatments will look like soon. We’re also thankful that our family's pediatrician also happens to be an endocrinologist, so she will be a great help to us as we navigate learning more about this condition, and following up with Felicity in the long term.
Like I mentioned, there are areas where we can see really encouraging progress, like the fact that Felicity is tolerating her feeds, gaining weight, and needing minimal respiratory support. Overall though, the timeline really seems uncertain as to when she could be ready to come home, which is so hard. We just want our little girl to get well and are praying for her and for endurance for us as we face each day.
All of this has been so mentally exhausting. It’s hard to be in a state of constant concern and worry. Yes, there are breaks of time when we’re enjoying ourselves, laughing and having fun, but there are always thoughts circling that can quickly transport our minds to the hospital where we get lost just thinking about Felicity. Sometimes Lucie will ask about her little sister and when she will get to come home. And we’ll tell her we don’t know and that Felicity just has to get bigger and stronger. I’m jealous of how easy it is for Lucie to accept that answer and to trust us, and to have peace. I want to accept that answer, to trust God wholeheartedly, and to have peace as we wait. It’s so hard though. When I found out I was pregnant I remember being thrilled, thankful, and nervous. My mind was immediately calmed as I thought of a song that I had been listening to earlier that week. I sing that song to Felicity now and listen to it when I’m filled with worry. It helps me to let go of some of the heaviness on my heart, it helps me to breathe and to pray.
Holy, there is no one like You/ There is none beside You/ Open up my eyes in wonder/ Show me who You are and fill me/ With Your heart and lead me/ In Your love to those around me - Build My Life
Sharing some pics from the last few weeks. Lucie had a mid-winter break so we were thankful for that special time we got to spend with her in the midst of all of this.
Much love, Los Hicksons