Tuesday, October 4, 2016

87 Days

"Ms. Wise, Mira is doing great. Let's talk about rooming in and getting her home." Those were the words I've been waiting to hear since July 8, yet I was immediately overcome with anxiety.

In the NICU world, "rooming in" is a one- (or two-) night stand that parents have with their babies before going home. You stay overnight at the hospital essentially parenting your baby with very little help from the nurses. When we thought Mira was going to need oxygen at home, our rooming in experience was going to include learning how to work the tank, get the oxygen levels right, monitoring her pulse and oxygen levels, etc. Thank God for my little trooper, we don't need oxygen.

But I digress. So I get the call on Saturday afternoon that we need to talk about a going home plan and that doctors want me to room in with Mira on Sunday night. If all goes well, she will be released on Monday. It all felt like too much too soon (one would think I should have been prepared since this is really all I've ever wanted). But before I tell you how it all went, I'll give you an update on Mira from "head to toe" as her doctor would say:

  • She was born at 1 lb, 14 oz, she left the NICU at 5 lbs, 10 oz - what a plumpster!
  • She came home about nine days before her original due date...she would have been born next Wednesday had she held on a little longer.
  • Remember that hole in her heart? Well, according to the last scan of her heart, that pesky hole is almost gone. I believe the words the doctor used were "so small they can't measure it." All the prayers from all over the place worked and I really appreciate it.
  • Mira got her groin hernias repaired which, oddly enough, helped her breath better.
  • She had a hemorrhage on her brain that dissolved and is no longer present 
  • She passed her hearing test with flying colors (she's going to need those ears with a mama like me)
  • She did well getting all of her immunizations (no major setbacks)
  • Lungs are doing well, still developing though
  • She's struggling with lots of reflux these days, but we hope it will resolve itself
Ok, now, about rooming in and coming home. I roomed in with Mira on Sunday night (she struggled with her reflux and finding a comfortable spot and I miraculously did not sleep through her 3 and 6 a.m. feedings). And on Monday, October 3 around 4:30 p.m. Mira was released from the NICU. After 87 days of ups and downs, uncertainty, tears, lots of love, resilience, perseverance, mothering on 10, loneliness and joy, my little baby sweetness came home to fill our house with the same love she's filled our hearts with. Her going away was so beautiful as several of her nurses gave her gifts and rallied around her (literally) when she was leaving. 

Now that the NICU experience is all over, I am relieved. But, admittedly, I'm also scared and anxious. I want to be the best mom to her I can. I want to make all the best decisions for her and I want her to thrive. I also feel victorious. I feel victory over my natural instinct to control and plan. I feel victory because I surrendered to God's plan and tapped into the grace he gave me to be Mira's mom. Victorious because my only job was to stand by her side and I nailed it.

For every single person who called, text, prayed, sent gifts, words of encouragement, told me their NICU stories, gave advice, read this blog, checked in and loved my baby, I want to say thank you. Thank you soooo much. I could not have gone through my life's biggest challenge and greatest joy without it.

I'll continue to blog here as I keep loving and raising Mira. Thanks for your support and prayers.

Ok, so YES this dress is a bit much! And I think Mira is embarassed that her mom made such a big deal of her ride home.

Proud parents of a little miracle...we made it home!

Monday, October 3, 2016


I've never held Mira without cords attached. And it's not something I focus on or need a pity party about. But when I was told that she might have to go home on oxygen, it gave me pause. We have tried to ween her off oxygen twice and it just didn't go well.

And all the cords have been necessary. It's what's kept us in the know about how things are working on the inside of her precious little body. So I am up for doing whatever she needs to have done but I couldn't help be a little selfish about not wanting that thing in particular.

As a mom, you probably lay your baby down, change diapers and clothes without making special concessions not to snap her heart monitor lead or oxygen cord inside her jumper. Or once you've changed that diaper, you pick the baby up and carry them to the kitchen in your arms while making their bottle. That's not been our reality thus far and, if we go home with oxygen, it won't likely be our reality for many months.

So I prayed. Not too hard and really only asked God once to not let that happen. To please make Mira strong enough to ween off oxygen before we discharge. Because, much like everything else with Mira, there's what I want and there's what God has already done. And my way to cope these days is just to go with the flow. If she needs oxygen, she needs oxygen, we can make that work.

Well, looks like I might have said that prayer within earshot of Mira. Last week, she had surgery to fix hernias in her groin area. One of the nurses causally mentioned that sometimes babies have trouble breathing when they have hernias because inhaling too deeply is painful. It felt like an epiphany but we would see the next day when they took her off the oxygen. They took off her oxygen and one hour without it turned into two turned into 12 turned into 48.

We are now four days out and she's still breathing on her own like a BOSS. If all continues to go well, it looks like I might be able to experience life with Mira untethered. For some, that might seem like a simple request. For me, it means everything. 

Thanks for your support and prayers (and so sorry for the delay with this post).

Mira is all smiles after she had her first meal post-surgery. She was realllll H-ANGRY before this picture.

Mira a few hours after they removed her oxygen...sleeping like an angel.