We got our first 5 AM NICU scary phone call this morning was alarming and sudden.
This is our life now. It’s the season that we are in. It’s a very solid mix of joyfulness and concern. And you can add a little splash of confusion, anxiety, frustration, wanting, longing and heartache. Can we just say it’s all the things?
In my last blog post when I said there was a “part 2” I don’t really think I meant that part two was going to include delivering babies, but we are so excited to announce the arrival of our two little bundles of joy.
We are celebrating the arrival of Emma Grace (3lbs9oz) and Kira Ruth (2lbs 7oz)!!
We made it to 31.6 weeks!!! We were soooooo close to 32 Weeks. That was the number I had in my head and honestly, from where we started, I think that’s a freaking miracle!!! I’ll share my birth story later, but for now let me update you on my twins! Cause I’m a mom of 3 overnight!
The theme of this pregnancy has been waiting in the fire. We’ve waiting on diagnosis, we’ve wated for results, we’ve held our breath at each scan, we’ve waited for arrival and now we wait for daily updates concerning the health of our twinkies. I can’t even pretend to know what is rally going on. I keep hearing things from docs, “it’s rare, but it can happen and it’s happening…” Oh, Yay…
Cyd was rare, Thank God she’s out. She rounded out her time with me at 21x18x14cms around and 1,300ml of fluid… (not a typo). She should have existed but she made her mark. She was a disaster, but she gone now so buh-bye. I don’t miss her.
We haven’t really gotten a clear picture of what actually happened while the girls were on the inside and I can’t sit here and tell you all the medical terms that have been thrown at me… Um, I make wedding invites and the past few days have been wayyyyy above my pay grade. Thank God for modern medicine is all I have to say.
Emma has been just randomly up, down, back and forth with breathing issues. She was placed on a vent, then taken off, then put back on… and now she is off again… She was the reason for the 5AM wake up call to go back on a vent. The call as alarming, but the outcome was what she needed.
For Kira, the gist of it was we were possibly misdiagnosed from the beginning, but there is not way to know for sure. Kira actually did have twin to twin transfusion syndrome (TTTS). It was what we went to Cincinnati for at the beginning. It just presented as selective fetal growth restriction (SFGR) because of the amount of fluids that she actually did have in her sack. Kira’s Esophagus is also disconnected from her stomach. The top caps just above her lungs and the bottom portion made a fistula connecting it to her wind pipe. When she would swallow fluids they would just come back out of her mouth making it seem like she was OK… She is already trying to trick me!!
This of course means surgery. Our first Surgery is hopefully tomorrow. Kira is small… Like really small. The size of a high heel maybe. There are a lot of complications that can occur but I do feel a peace about it our entire NICU stay. I’ve been told from the beginning of all this, that we would be in the fire.
And here is more fire. Someone just tossed some coals on it.
Luckily, we aren’t alone in the fire at all. One might say we are throwing down in the fire!! We have heard from SO many people telling us they are praying for us, they are sending little gifts and NICU clothes, helping out with AR, sending gift cards and making meals for our family. God has been showing us that he is standing next to us by you standing with us. AND Many of you are still asking how you can help!! (We do have a Meal Train set up by some friends… I live with Grizz… They knew food would be the biggest struggle ;).
I can’t even think about it anymore without sitting behind the privacy curtain of our NICU room crying. It could be the hormones, but it’s also just incredibly humbling.
I love you all and from the bottom of my heart and all my children, Thank You.