Pressing the Reset Button – Backward Progress with a baby in NICU

The last couple days have been a bit rollercoaster-y. From on the inside and the outside of the NICU. As you might recall, I asked God for some movement for Mira. And almost as soon as I hit publish on the blog, I called and was told that she had been moved to the “B” side. WOO HOO, right? Well…as soon as I thanked God for the movement, my mom-stincts told me that she’s not ready yet. Earlier that day, I’d had a conversation with the doctor that the hole in Mira’s heart is giving her some breathing and weight gain issues. The fluid in her lungs I’d discovered the other day is actually a by-product of the hole and has caused her little heart to enlarge because it’s working too hard. That she might have to have surgery to fix the hole. She also has a very common hernia in her groin which will have to be remedied with a minor surgery before she leaves.

So, I walked away from the visit feeling a little deflated. Mostly because it feels like we had taken three steps forward then two steps back. So you can imagine that I was surprised at the fact that they’d moved her, with her heart and breathing issues, over to the side where babies need a little less attention. Immediately, I said “Be careful what you ask for Kim.” When I visited her, I was having some trepidation because her oxygen levels were still not staying stable and she was breathing very quickly. Like all the other times, I asked God to handle it, spent time with

The day that Mira was completely off her oxygen (she only has a feeding tube in her nose)
The day that Mira was completely off her oxygen (she only has a feeding tube in her nose)

her and went home.

Later that night, my mama visited Mira after work and just so happened to be there when the doctor came in around 4 a.m. to check on her. He had been reviewing her chart and x-rays and was concerned about her heart. He made some tweaks to her meds, ordered her to be moved back over the “A” side in the morning and vowed to talk to her care team to come up with a plan for moving forward. It all was the perfect lesson from God, a smack down if you will. I could hear his voice saying, “Do you want her to move or do you want her to move when she’s ready?”

Since then, we’ve had constant conversations, millions of questions and daily check-ins with the doctors on her condition, their approach to treating her with the hope of avoiding surgery and the goal of resetting her back to where she was before this issue cropped up.

Meanwhile, outside of the NICU, I continue to struggle with constantly swelling ankles and blood pressure issues – both that developed after Mira’s birth. Although I have a family history of blood pressure, I’ve never had it or taken medicine for it. So to accept an actual diagnosis and medicine has been hard for me. But after today’s doctor’s appointment, I just need to shut up, take the meds and get on with it. Plus, when you have a baby in the NICU, it’s hard to actually let your body rest after having a baby because of the constant need to shuttle back and forth to the NICU from day one. So I’m trying to remember that my body is still recovering from giving birth.

Overall, it looks like both Mira and I are hitting the reset button. She’s trying to get back to the point where she has dry lungs and can try bottle feeding and weening off oxygen again. And mommy is getting her head back in the game and (reluctantly) continuing on those blood press meds. With my need to advocate for Mira’s care around this new issue, I got my steam back. There’s nothing like needing to fight for your baby that puts the wind back in your sails. Perhaps I just needed a few minutes to regroup and prepare for the last leg of our time in the NICU. And I also understand that sometimes when we’re going too fast and things are a little out of control, God pulls us back to square one in order for us to

Oh happy day! Mira was thrilled to be off her oxygen. We are praying for her to get back here and go even further until she's home.
Oh happy day! Mira was thrilled to be off her oxygen. We are praying for her to get back here and go even further until she’s home.

be able to move forward the right way.

Today, my little baby sweetness is 35 weeks and Friday she turns two months old (side note: I have no damn clue how to count her age. She turned eight weeks last Friday but was born on July 8 so September 8 seems to be officially when she turns two months. At this point, I’ll just celebrate both since she deserves all the celebration she can get).

Thanks for your prayers and support.

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