At first, the Neonatal Intensive Care Unit can be a very intimidating place. But when your stay is as long as Scarlett’s was, you get to know the staff really well and it becomes something like a second home…almost.
Within the first couple of days, Scarlett became extremely sick. Almost immediately she had developed an infection in her bloodstream that could have very easily taken her life. But our girl is a fighter and it helped that the doctors began antibiotics even before her test results were back. (Which I’ve learned is pretty standard care for any preemie) I spent every moment I could with her. I wanted to soak up every tiny detail of her I could because I never knew if the last time I saw her would be my last time to see her alive.
To say that I prayed every single day would be an understatement. I feel like I was constantly talking with God. After all, he is the one who narrates our stories, we’re just along for the ride. But let me back up here really quick. During my hospital stay, my spirit was tested. I was fighting a constant battle with fear and I have/had an ongoing battle with anxiety (I’ll talk more about that later). To make a long story short, I have since learned that we don’t get to know why things happen. We just have to have FAITH, and trust in the Lord. As much as I wanted to have full-term & healthy pregnancy, that wasn’t in my story. Will it ever be? Only God knows. But as of that moment, it wasn’t. So instead of letting all of these “what if’s” and “why me’s” eat at me. I chose to believe that there was a lesson to be learned in what was my “here and now”.
Now, that Scarlett was here, a new chapter in my life was starting and I needed to be prepared. And what better way to prepare myself, than to make sure I was in an open conversation with God. So as tired as I was, what with the getting used to pumping every 2 to 3 hours, making sure I was getting rest, and getting myself to the hospital every day (while also getting used to walking around again); I made sure to be with Scarlett as soon as I could. BJ & I tried to be there for every Touch Time and I spent all of my free time at the hospital.
By the grace of God, Scarlett’s infection cleared up but she was still extremely fragile and it took a lot out of her. As I mentioned previously, the NICU can be a pretty intimidating place. Even though BJ & I were the parents, we had to do what the nurses and doctors told us and follow their rules. At first, every day I went in I would get an update from whoever was her nurse that day. They would tell me how her night went and what medications she was on and all of that. I didn’t really understand a whole lot of what they would say. Until one day (I’ll never forget), this little Filipino lady came into the room and started barking orders at everyone. (She was one out four of Scarlett’s Nurse Practitioners) She was doing her rounds for the day and came in to check on Scarlett. When she was done she asked me if I had any questions; I was a little afraid to answer her (if I’m being honest), but I asked her what few questions I had. She then did me a huge favor and explained everything to me in detail. From Scarlett’s condition to what her plan of care was and everything I had wanted to know (but been too afraid to ask). Then she gave me the best piece of advice anyone had ever given me.
SPEAK UP & never be afraid to ask questions.
She said, “This is your child, we are just her doctors. We are helping to keep her alive but at the end of the day she belongs to you. You will be with her everyday, you will get to know how she responds to things and you will know what she needs. So it’s up to you to help her. She’s just a baby, she can’t tell us what she needs. So you need to advocate for her. If there is something we do and you don’t understand why we are doing it. Then ask us. If you feel like we are doing something wrong don’t be afraid to speak up and tell us.”
I have thanked God a million times for that woman.
After that, I started becoming more involved in Scarlett’s care. I made sure to be there and listen in every day during rounds and asked a lot of questions.
Scarlett was on a lot of medications and needed several blood transfusions. In the beginning, they had lines in her umbilical cord to give her all of this; after about a week that fell out and was no good. They tried to insert a PICC line but because Scarlett’s veins were so tiny they had a really hard time making it work and finding veins for IV’s was difficult and didn’t last very long. So she had to have one surgically put in through her jugular vein. I’ll never forget how dangerous that sounded and I remember not being able to see her for a long time because of it. I was a nervous wreck, she was only 10 days old and already she had to have surgery. But the hospital we were in has the BEST NICU Staff and they took such great care of her. The love I have for those people is more than I can express. The surgeon was extremely careful with her and one (out of four) of her doctors watched over her and made sure she was safe the entire time. (God placed some amazing people in that unit I tell ya) They were able to put it through her vein but the line was sewn it into her skin in order to make sure that it wouldn’t fall out. These marked her first big battle scars of many more to come.
At fifteen days old, Scarlett had her first bath. This was also my very first time to “hold” Scarlett. (Crazy right? 15 days old before I was able to hold her) I was so unbelievably excited and more than a little apprehensive. She had put on a little more weight but I still couldn’t believe how tiny she was, she looked like a little frog, haha. I loved the nurse who helped us that day, she was amazing. She explained exactly what we needed to do and how we would do it. I gave Scarlett a really quick sponge bath; I only did parts of her because I was too afraid of hurting her, so I let her nurse do the majority of the work instead. When we were finished we had to switch out Scarlett’s isolette; she was still intubated (and would be for a while) and on a High-Frequency Oscillator at this point. We needed a lot of help and extra hands to get the job done. This was the most exciting part for me because while the staff switched out the isolette, I held Scarlett! She was all bundled up in her nest, and I couldn’t exactly snuggle her to my chest but, still, I held her in my arms!!
In NICU, even though there are a lot of scary and sad things that happen. There are also a lot of really good and amazing things that happen too. So there are these things we call NICU milestones, and to any other parent, they may not seem like much. Honestly, if you aren’t paying close enough attention you might miss them. But, they’re a big deal. So we celebrate them! We celebrate the little things, because for these tiny fighters, they are big victories.
And this was the most exciting day yet.