Chapter Ten: More Than Meets the Eye

On February 9, 2018, just two and a half weeks after being on CPAP, Scarlett graduated again and was put on High Flow Nasal Cannula. It was such a relief! Not only did it mean that her lungs were growing stronger but she was also that much closer to going home.

But she wasn’t going home just yet – that was a fact that BJ & I were very acutely aware of every day. However, most everyone else didn’t, which is how we ended up with a list of most commonly asked questions such as:  When will she get to go home? How much does she have to weigh? or How much oxygen does she have to be on?  They were all good questions to ask, but they were also some of the most difficult to answer. Simply because we didn’t have those answers. A lot of people assumed that because she was on a nasal cannula, all she had to do was gain weight and then she could go home. But there is so much more to it than that. It seems crazy but there was still a lot Scarlett had to work on before they would even consider giving her the “boot”.

Let me start off first by saying that, ideally they say to expect your baby to be in NICU until their “due date” when they were supposed to join the world. But I’ll let you in on a little secret…due dates are liarsssss. Sometimes babies get to go home before their “due date” which is awesome and so exciting for those families! Scarlett however…ha, she doesn’t know or care about any “due date”- Scarlett runs on Scarlett time. Needless to say, her due date came and went and we were STILL in the NICU. I think at this time she was the oldest baby in the unit, and I remember always joking with her (& the nurses) that if she didn’t get her act together soon they were going to kick upstairs to the geriatric floor.

Now that her lungs were strong enough,  it was time to focus on the other parts of being human. Like eating! Up until now, she had only been fed through the NG Tube which would still be in place until she could take her full bottle on her own. Unfortunately, by this time Scarlett had developed a protein allergy to the proteins in my breast milk (this can happen to babies between the age of 4-6 months & some will “grow out of it”) so she was started on Alimentum (a hypoallergenic formula). I just have to say that I know my poor Scarlett’s introduction to bottle-feeding was less than exciting because that formula smelled AWFUL I can only imagine what it must have tasted like!!

Every day a speech therapist would come and try to bottle feed Scarlett and keep on the lookout for and problems she might have. Such as keep her oxygen levels up and heart rate steady while making sure not to choke on her milk. This also meant that I have to be the hospital full time and be there for every feeding so that I could do more hands-on with Scarlett. FINALLY! I was starting to feel more like a normal parent with a baby on a feeding schedule (honestly though, I was spoiled because the night shift nurses did the night feedings for me so I could get rest! Thank God for nurses! Seriously.).  I don’t know if this is the same for all hospitals but in our NICU, Scarlett was given a time limit of only 30 minutes to drink her entire bottle before they gavage fed her the rest through her tube.  This is because babies actually burn more calories than they are taking in if they take longer than 30 minutes to finish eating.

Scarlett did okay the first couple of days she tried to bottle feed. Some times she would drink her whole bottle within the time limit, sometimes she didn’t, and sometimes she just straight up fell asleep while trying to eat. (Eating can be hard work & tiring y’all!) She also had issues with her tongue… the speech therapist noticed that when she would suck on the bottle her tongue would stick out a lot and she wasn’t able to suck on the nipple properly. So there were stretches and exercises we would have to do with her daily to help correct that, (this is a problem we dealt with for a while even after leaving the hospital).  We also had to give her chin support while feeding her – meaning, I had to hold the bottle and try to keep her mouth from opening too much while she was eating. (Basically – I had the worst hand cramps of my life in those first few days of feeding her. Why does no one tell you about these things when you become a mom!? Lol. Note to new or expecting moms: your hand muscles will be sore until they get used to holding a bottle – another motherhood/ parenting perk to look forward to!) 

She did at one point have to do a barium swallow study because she would D-sat while she was drinking her bottle and her heart rate would drop a little. Thankfully she didn’t have anything seriously wrong with her but the study showed that she did have bad reflux, which is pretty common in babies but especially in preemies. So we had to hold her sideways and at an angle while feeding her and make sure to burp her often. (Which wasn’t easy because Scarlett refused to do it most of the time!)

While Scarlett worked on getting this bottle-feeding, her lungs were busy growing stronger and improving (little by little). She moved on from High Flow Nasal Cannula to just regular Nasal Cannula. I wish I could tell you the difference but…I’m not a Respiratory Therapist sooo… I consulted with my friend Ashley (Scarlett’s favorite RT) and she helped me sort things out a little. I put together this little pyramid of sorts to reflect Scarlett’s respiratory support journey.


Screen Shot 2018-10-02 at 2.15.39 PM
Keep in mind this does not look the same for every baby. This was Scarlett’s Mountain to climb. She started at the bottom and worked her way up!


It was about 6 weeks later & Scarlett had to be threatened with the possibility of going home with a G-Tube before she finally caught on and realized that bottle feeding was not an option but a requirement to go home. Let me tell ya, she showed her sassy stubbornness early on – but this was one argument she would not win. (okay, let’s be honest, I didn’t win this one either – she just decided she was too cool for a g-tube. #DIVA).

Scarlett in her big girl bed. She was also moved from a private room into a “general population” one, another sign that we were closer to going home!
My bright-eyed fighter.

I’ll never forget the day another one of Scarlett’s doctors came by and talked with me about the possibility of her going home soon. It felt so surreal,  I couldn’t believe what she was telling me. We had talked about how Scarlett was doing so well weaning down on the oxygen and she said, “welp! Don’t be surprised if they tell you next week she’ll be going home.” My eyes literally watered at the thought. It had been such a long road I couldn’t believe we were getting to the end. BUT! before we get there, there were a few more things to check off the list, so that’s where all of our focus and attention went.



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