Wednesday, June 12th

From Facebook post:

Adjusting expectations is not easy.  First time parents don’t normally leave their newborn and drive away after they’ve watched 3 very amazing nurses quite literally save their baby’s life when her heart rate and blood pressure suddenly plummet for an unknown reason.  We know this “NICU life” isn’t going to be easy to get used to.  I can easily feel like “I can’t do this”.  And I really can’t. On day one I feel defeated after a great morning of meeting goals to get to my baby, to see her come through two surgeries beautifully... then to get held up by the work of sustaining her tiny but mighty life while she recovers, and the “bumps” that come along the way.  Every minute with her is so precious, so to have to leave her to go spend some time sleeping seems ridiculous.  We know in our heads it’s logical though, our bodies need sleep....so we left Annelise in the caring hands of her night nurse tonight, and got sleep at the Rainbow House.  These days are hard.  My body hurts, my heart hurts, and I’m collecting memories that I don’t want.  I don’t know where to put my thoughts when I’m trying desperately to keep the pain away, but there’s so much of it!  

So I don’t keep the pain away, because I can’t.  I do know that even when it hurts, God is here, in these hard moments too.  What I feel is “too much”, God is bigger than that.  All the things that could possibly go wrong today... God is bigger than that too.  My fight is not with the scary moments or the overwhelming feelings today.  I have a God who already knows what the day will hold, and my job is to love my girl, and get to know her and show her as much love as we can, while figuring out what parenting looks like in the NICU.  Annelise has already made it past so many obstacles.  She’s here and alive!  And we’re going to celebrate every part of that being alive, and push through the hard times because she’s more than worth it.

Thanks for letting me spill my guts this morning.  It’s actually quite helpful to try and update you all on the real time happenings, because it forces me to slow down and try and process what’s going on.  I’m going to try and stay in the moment today with Kevin though, so if there are no major changes, I’ll just post a recap of the day tonight.  Thank you for your continued prayers for our mental and physical health!  I’m so grateful to know and love my Lord who keeps us close when these times are hard, and sends us rainbows that end at the Rainbow House at the end of a hard day.

Our day was lifted up in prayer from our friends and family for peace and rest, and the Lord not only blessed us with a “yes” as far as a medically uneventful day for Annelise, but went far above and beyond my expectations for what the day could look like.  We spent some time connecting with an amazing couple at the hospital who also just had a baby girl with so many of the same issues as Annelise!  We also got to spend lots more time with baby girl since there were far fewer professionals hovering around her bed today.  She was doing so well that Kevin and I felt good about taking a break to the coffee shop... and to top it off... there’s a massage therapist employed with the hospital, and someone asked her to come in to see us, so both Kevin and I got massages at Annelise’s bedside! 🥰We had some sweet moments as a family plus awesome nurse, made her some footprints and a scrapbook page to decorate her room, and learned how to put breast milk on a swab and then use it to swab around Annelise’s mouth.  She stuck out her little tongue to taste it, and it was the highlight of my day!  That was until we saw her moving her legs by herself!  No idea what movement overall she’ll end up with as far as her legs go... but it was such an encouraging day, and in contrast with yesterday, made each sweet moment even sweeter!  Thank you friends and family for blessing us with your prayers and texts and love!  🥰