All of the doctors are so impressed when they learn that we’re NICU “pros” since Lucie was a 24 weeker, and had a 16 week stay at the hospital. They try to comfort us by saying that Felicity’s stint won’t be nearly as long, especially after she sailed through her first two weeks of life with little to no issues at all. With each day she would make small steps of progress and gave no indication of any major health concerns. The main focus was just getting her to put on weight by increasing her intake of breastmilk. Her level of support continued to be minimal: feeding through a feeding tube and receiving air pressure to keep her airways continuously open, also known as “peep”, without needing any additional oxygen than what you or I breathe in. In fact one of the residents even said, “Felicity is doing great today, as usual…” It was all very encouraging, but didn’t make any of this easier. Our hearts still ached because we knew Felicity still had weeks and weeks ahead of her before she would be given the “all clear” to come home
Then, just after turning two weeks old, she hit a rough patch. We found out from some blood work that Felicity had an infection of some sort. It wasn’t clear if it had spread to other areas in her body, so she had to get more blood tests, xrays, ultrasounds, and even a spinal tap(!) to determine the extent of the infection. The medical team needed to rule out if it had spread to her bones, brain, or gut. Throughout all of this poking and prodding, she didn’t need an increase in respiratory support which is great, but she did stop tolerating the breastmilk, which caused them to further suspect a gut infection and required that they stop giving her her feeds so that she could rest. She received the first of what have now been three blood transfusions because she had a low blood count after all the tests they did. By last Monday we had some answers: the infection did not appear to be in her bones, or her gut, and was not in her brain or spinal fluid, however after a third positive blood culture in a row the team believed that it had reached her heart. They performed an echo and were able to confirm that there was evidence of bacteria in the vessels of her heart. Apparently it’s very rare for that to happen. So with that diagnosis, she will now need 6 weeks of antibiotics and repeat echos to determine that the medication is helping.
In the next few days they were able to totally rule out the gut infection and started her back on breastmilk, but yesterday she showed signs of not being able to tolerate it again, so they have once again stopped her feeds, and want her to have 7 days of gut rest. Since the things that will determine when Felicity can come home include her being able to take all of her feeds by mouth, as well as no longer needing air pressure support, this means we are now in a complete holding pattern until she can tolerate her feeds. After 7 days of rest, before they decide to start her back up on breastmilk, they are going to perform a barium study to follow the path of her intestines to make sure there isn’t a narrowing or blockage. If there is, they will have to repair it with surgery so we’re praying this study comes back clear of any issues. After she can consistently handle her feeds through the feeding tube, we can then try to give her a bottle to see if she can start taking visible steps towards coming home. As you can see, this is all going to take awhile and we know that no matter what, she will be in the NICU at least as long as the 6-week course of antibiotics as she must receive them through an IV. In addition to all of this, unfortunately Felicity’s newborn screening alerted us to a potential genetic disorder that may impact her ability to produce a certain hormone. It is common for preemies to get a false positive on this particular screening, but Felicity has had the screening done three times now, and the results have not been within the tolerable range. An official diagnostic test will need to be performed at some point in the next few weeks to provide us with more information. We are praying that this test also comes back with no major issues but won’t know more for some time.
Although we may be NICU “pros”, every bit of this journey has been difficult and at times disheartening. I wish I could say something to tell you how we always find ways to look at the bright side, and are not weighed down by the heaviness of all of this. Of course, we are incredibly thankful for more things than I can count, but after everything we’ve endured, from me being on bedrest in the hospital for over five weeks, to this time with Felicity in the NICU, it all feels like too much to process at times. Like I said, we are incredibly thankful. For starters, I’m beyond thankful that Felicity and I are both alive — I am not exaggerating when I say that my uterus rupturing could have been fatal for one or both of us. I am also not exaggerating when I say that God was there down to the detail in the exact way that it ruptured, so that there was no loss of blood, no distress to Felicity, and complete protection over both of us. It’s truly miraculous and incredible to comprehend. My doctors were amazed at how everything happened that day as it did, expressing that they had never seen a rupture happen like that. I actually asked them to take a picture, so I could see what it was that had me on bedrest all that time. If anyone is curious to see it, let me know!
I recently read this passage, and was encouraged by this verse, because there have been so many times where I have felt so weak, weary, tired and sad, but in the midst of it all, God provides me with strength again and again.
Thank you to so many of you who have been checking in to see how we’re doing, and to see how Felicity is doing. Your words of encouragement, your prayers, and your delicious meals have been so appreciated. Many times, a text or call comes in just when I feel that need for a little more wind in my sails. Having this community of support from all over has blessed us tremendously. When a friend brings a meal or sends a delivery our way, it’s been a cool witness to share with Lucie how so many people are surrounding us during this time of need. She’ll ask why someone made us food, and we get the opportunity to share with her how loving and kind our friends and neighbors are in serving us while we are in the midst of this difficult time. Not having to think of what to make for dinner each night may not sound like much, but to us it is such a gift.