Chapter Seven: Many the Mile(stones)

You know that hour moms and dads are given to bond with their baby right after they are born? The Golden Hour, it’s the first time a mother gets to carry her child and hold them to her chest. That was something I was most excited about and looking forward to my whole pregnancy. As I said before I am a first-time mom, and when we found out we were going to have Scarlett I was thrilled! I signed up for and downloaded all sorts of baby & pregnancy apps, and I couldn’t wait to start SHOPPING for her!

But you know, life doesn’t happen the way we plan.

So when Scarlett was born, she was too small and needed to be taken care of by doctors right away.  Sadly, Golden Hour didn’t happen for us until she was 47 days old. Day after day I would visit Scarlett and only get to see her through the plexiglass of an isolette. Only during Touch Times was I able to place my hand on her head and have her to wrap her tiny hands around my finger. I could only dream about the day I would get to hold her in my arms.


The day started out like any other day, BJ and I got dressed and ready and headed to the hospital. While we’re there we were chatting with Scarlett’s nurse, Holly (She’s an extremely sweet lady who always had stories to share). As we were talking she mentioned something about Kangaroo Care. She had assumed that by now I had already held Scarlett, which I told her I had…in a way… Only once when I lifted her up during bath time but that was it. She couldn’t believe it. She said, “Well today is your lucky day, you’re gonna hold your baby.”

I’m pretty sure my heart skipped a beat. I was in disbelief. I had waited for this moment to happen for what seemed like forever!

It didn’t happen right away though, we scheduled to do it during Scarlett’s next Touch Time that day; which was a few hours away. We decided to go back to the RMH, I changed my clothes again (I needed to wear a shirt with buttons so we could slide Scarlett inside) and we called my sweet friend Shannon. Shannon had talked to me before about wanting to document Scarlett’s journey for us by taking professional style photos. It was so thoughtful of her and I am so grateful that she offered to do that for us. I told her it would mean the world to me if she did. So I called her up and asked her to be with us that day. This was a big moment and a huge milestone for both Scarlett and me. I wanted to remember it forever. Thankfully she wasn’t too busy and said she’d be more than happy to head on over to us.

When we got to the hospital again, Holly told us our “game plan” and how this was all going to work. Scarlett, remember, was still intubated at the time so we would have to be really careful while moving her around. I was going to sit in the chair first, and BJ would hold Scarlett in his hands while Holly held her tubing. Together they would walk over to me and place Scarlett on my chest. Then Holly would grab a pile of blankets and pillows to put around me so I would be comfortable and they would have something to hold Scarlett’s tubing up as we sat together.

I was nervous. I was about to hold my baby girl for the first time in our lives.

She was so unbelievably small that I was afraid I would hurt her. She was just so fragile.

Seeing her in BJ’s hands, made my heart swell with happiness. I was excited that he was actually getting to hold her for the first time too. Sure it was only for a short while, but, he’d missed out on so much already (because he had to work). I was thankful he was able to be there for this. My emotions were all over the place; as soon as he placed her on my chest I began to cry. (Who wouldn’t?) This was our moment. The one I had been looking forward to for so long. My tiny fighter, who had already been through so much in her little life, was finally going to be held. It was such an indescribable moment.

She was so happy.

& I was over the moon.

I remember I could cup my hands around her. Her little bottom fit perfectly in my palm and I could wrap my whole hand (which if you’ve seen them in person, know they not very big at all) around her head. She was beautiful and warm and cuddlesome. I couldn’t believe I was finally holding her. She nuzzled into my chest and would occasionally try to look at me. I never wanted to put her down.

Unfortunately, that hour passed quickly and when babies are small and delicate like that the nurses really are strict about only holding for an hour. (Even though it takes about 20min to get everything situated) I eventually had to put her back. It was okay though, I knew I would hold her again soon.

Soon, it wasn’t soon enough though. A few days later Scarlett blew a pneumothorax in one of her lungs and any extra movement was prohibited for a while. It was a roller coaster. Somedays, she did really well, her lungs would look okay-ish, and I would be able to hold her. Other days, her lungs would look like complete crap, and we would pray she wasn’t fighting infection, which she did a few times throughout her hospital stay.

On Christmas, the NP’s & Doctors thought her lungs were strong enough, they had been able to wean her off a high amount of oxygen and she seemed to be doing really well. The next step was to try to extubate her see how she would do on CPAPThis was a HUGE step forward and something we had been looking forward to for Scarlett. If she did well it meant her lungs were getting stronger, her chances of infection weren’t as high and it was just one step closer to going home.

She lasted 4 hours.

Which, was an amazing accomplishment when looking at her lungs and how far she had come already. But I’d be lying if I said I wasn’t disappointed and a little heartbroken about it. She wasn’t ready though, and we all had to remember that we were on Scarlett’s time. She would let us know when she was ready.

Did we listen though? Nope.

Two days later after Scarlett’s first failed attempt at CPAP, they decided to extubate her again and try CPAP – again. Now don’t get me wrong they didn’t do any of this without telling me first. (but I would kick myself in the butt later for agreeing with them)

Did she do well? Kind of. This time she lasted about a day until they finally realized she was struggling too much and her lungs couldn’t handle the extra work CPAP required of them. She had to be re-intubated.

Can you imagine how she felt? Having tubes shoved down her throat and taken out again and again.

I was angry.

We should’ve waited longer. Scarlett wasn’t ready and she was still trying to recover from the first attempt. It didn’t make sense to try again so soon. She was fragile, yes she was strong but she just wasn’t ready.  As I said before they did tell me what they were doing before they did it and I did say okay; because we all know sometimes you need a little push when you are trying something new that is scary and requires a little more work. (All of that was true for Scarlett). But I later found out, part of their reasoning behind trying it again was because when they re-intubated her after the first try, the tube was too small and she had an air leak. So instead of just switching the tube, they thought they’d give her another try and that’s what made me so upset.

She had a really tough time recovering after that. (This is why I kicked myself in the butt for agreeing with them) She struggled for a while and they had to increase the amount of oxygen she was on (which wasn’t good because being on a high amount of oxygen can damage your eyesight after a while). It felt like we had gone from taking one step forward to taking two steps back. It was hard and frustrating and so exhausting.

After that, the momma bear in me came out and I started to be more vocal and talked to the doctors more about Scarlett’s care.

Note to fellow NICU parents: Don’t ever be afraid to speak up and ask questions. Believe me, it pays off to be there during rounds and ask any questions you have. The doctors won’t mind, as long as you remember that they are the ones who went to school and they do know what they are doing (the majority of the time). But don’t be afraid to advocate for your baby. It’s important that you know what is going on with them and what the doctors’ plans are. I’m not saying you get to call ALL of the shots when it comes to their care, because realistically you don’t. But try to be as involved as possible and get to know your doctors really well. By the time Scarlett was out of NICU, the doctors knew me pretty well and we’d have fun during rounds. It made things a lot less stressful and took some of that weight off of my shoulders, knowing that Scarlett had the best doctors on her side.

So, even though it felt like we were moving backward, I knew we would get through it. We just had to take things one day at a time.

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