Disclaimer: This post includes a lot of dates. If you’ve been following the other entries, you’re aware I did not keep a journal at all during Claire’s stay in the NICU. Please do not think I’ve got some sort of laser mind and can keep details straight easily. It’s actually the polar opposite. I’ve forgotten my husband’s birthday…twice…I do most of my Christmas shopping on December 22nd because “Oh my gosh, Christmas Eve is in two nights!” I have no clue what I ate for breakfast yesterday. BUT…for some reason, when it comes to Claire and her medical history, my mind is a steel trap. I can rattle off dates, procedures, doctors, etc. like I’m on a game show with prize money to be won…(can someone make that happen, btw?! I could use some extra cash…;))
Life in the NICU had its share of ups and downs, but nothing could have prepared us for the lowest of the lows. July 4th, 2015 will be a day I’ll always remember because the feelings of hopelessness and emptiness crept back into our lives like thief in the night, taking our most prized possession, the health of our little girl.
We had some phenomenal doctors and nurses at the hospital, however there was one doctor who seemed to lack any kind of bedside manner when it came to talking about Claire. His tone always came off arrogant and rude, but after confiding in one of our nurses about it, she shed a little bit of light that helped me process his demeanor a little better.
“He just likes to be able to help and figure things out. Claire is such a mystery and he can’t crack her case. I don’t think that he’s meaning to come off that way; I think he’s just frustrated he can’t figure her out.”
Join the club, dude.
Having this bit of insight on this doctor helped, but it didn’t make the way in which he said things any easier to digest. At this point, we had been in the NICU for nearly a month, and Claire was still struggling in certain areas. She wasn’t at the point where she could feed on demand. What few ounces she would gain, she would lose just as quickly. And as soon as she would graduate from her incubator bed to a regular hospital crib, she’d be moved right back because she couldn’t maintain a steady temperature.
He came in for rounds the morning of July 4th with a solemn look on his face.
“She’s not gaining any weight,” he began. “We have a really good track record of helping babies gain weight in our NICU, but she’s not. I don’t know what’s wrong with her.”
“Do you think she has something genetic? Do you think she has something degenerative? Do you think she’s going to live?” My husband and I asked as we fought back tears.
And that’s when the pit of worry, doubt, and uncertainty in my stomach became a boulder. What in the world is going on?! Would we ever get out of this hospital with our baby alive?
“I don’t know. We need to do a repeat brain MRI, blood work, and a bone survey. Other than that, we can try one more thing to see if it will help her gain weight, but I don’t know if it’s going to work,” he told us.
He came up with a plan to put Claire on MCT oil, which is essentially saturated fat that can help with weight management. This was our last ditch effort, our Hail Mary during the last play in the fourth quarter with no time left on the clock. Let’s toss it up and see what happens. Not exactly the kind of health plan you want to have for your child.
I don’t think I’ve ever seen my husband look so worn down and disheartened. Throughout this whole process, he had been the one to keep me upbeat when I was discouraged. He’s the one who stayed strong when I would crumble. When the doctor left our room, we both cried and seeing the tears well up in his eyes and roll down his cheeks crushed me.
Claire had so many areas that needed improvement before we could move forward, and the outlook seemed incredibly grim. We both worried that we would never bring our baby girl home. This was our lowest low.
One thing that has always been consistent about Claire’s journey is that I’m constantly reminded that I’m not in control. I can do my best to advocate for her, but at the end of the day, I’ve got to give it up to God. Three and half years in and it’s still a daily struggle.
While it sucks to be faced with so many situations where I have zero control, I will forever be grateful to Claire because she has strengthened my prayer life and brought me closer to God. So, when we got the very harsh news of “I don’t really know what’s wrong and I don’t know how to help and I have no answers for you,” we knew what the medical field could not answer, our Divine Healer could.
And so I prayed.
On July 5th, I began a novena to Our Lady of Perpetual help. A novena is a kind of prayer Catholics pray for nine consecutive days with a specific intention in mind. In this kind of prayer, it’s important to know that Catholics aren’t worshiping Mary. When we pray, we are asking her to pray for us, just like you would ask a friend on earth to pray for you in a time of need. My prayer for this novena was a LONG shot, but hey, who am I to put limits on God?! I prayed that if it was God’s will, by the end of my novena (July 14th), our baby girl would be strong enough to come home.
Claire started on the MCT oil on July 4th. Slowly, yet surely, Claire started making weight gains. The MCT oil was doing its job! But, we were far from the “all clear!” on high tailing it the heck out of there. Claire had made some good progress with her feedings, but she was still inconsistent with her on-demand feeding. She needed to be able to drink a certain amount daily for three consecutive days.
Fast forward to July 10th, Claire was making progress but the reality of making it home by the time the novena ended (4 days) wasn’t looking good. I remember leaving the hospital that night, and I prayed, “God, from my view, things don’t look so good. But I know you are a God of miracles and Your ways are not our ways. You can still make this happen. I will not lose hope.”
The next morning I walked into Claire’s hospital room and was greeted by a very enthusiastic nurse who old me Claire had rocked her feedings the previous night. And here is how God works in mysterious ways.
That night, Claire had been kind of fussy in her crib. Our nurse consulted with the doctor on call, telling her she thought Claire was fussy because she was hungry. Claire hadn’t been consistent yet with on-demand feeding and the doctor told the nurse to hold off for a little while longer until her next scheduled feeding. But our nurse, smart and intuitive to Claire’s needs, insisted that she be given a bottle. Thankfully the doctor was open minded and said “Ok, give it a whirl.”
Lo and behold, our feisty little fire cracker downed that bottle! At the very last minute to keep on track with that July 14th “go home” date, Claire started her on demand bottle feedings. Now, the key was keeping her on track. That nurse was our answered prayer, our advocate for Claire when we, as parents, weren’t there. God provides for us in ways we would never have dreamed.
Day by day, bit by bit, our sassy premie girl was adding weight, keeping it on, and continuing her on-demand feedings. With weight picking up, she was also keeping her temperature stable and was able to be in a “big girl” crib (another requirement to be able to go home).
On July 12th we were told if she kept it up and passed her carseat test (which she had failed once before), we could go home in two days! My prayers continued with a new fire and zest; I knew God had His hand in this.
On July 13th, Claire passed her carseat test.
On July 14th, exactly nine days after I began the novena to Our Lady of Perpetual Help and 10 days after that doctor gave us news that sucked every ounce of hope from our hearts…
Claire. Came. Home!
God answers prayers. God works miracles. We need to be brave enough to ask.
Our oldest attended VBS last week and this is one of the songs from the soundtrack and it seemed fitting for this post. If you’re not into the cheesy lip-singing and dancing, do what I do and play the song, but minimize the screen so you can enjoy the music but don’t have to watch the video 🙂