Sunday, June 16th

The update for today:

The morning was super scary.  We weren’t at the hospital when it happened, but Annelise’s breathing tube came dislodged, and long story short, she ended up needing chest compressions.  She recovered quickly, and I think I’m glad I wasn’t there when it happened.  I don’t know how quickly I would recover from an event like that.

The afternoon:

Annelise has been getting help from the super cool respiratory therapist here, to loosen the stuff in her lungs.  Because of the chest compressions earlier, the heart surgeon ordered a scan of her brain, to make sure there are no brain bleeds, because that would mean no heart surgery until that gets taken care of. If all comes back ok, we’ll head to surgery in the morning after multiple specialists have one more meeting about her.

We met with the heart surgeon, Dr. Hammel, this afternoon, and he primed us for what tomorrow will probably look like.  He thoroughly described what he’d be doing for Annelise.  Closing the big hole between the bottom two chambers of her heart (the vsd), closing the pda (thing in the heart that needs to be open in the womb, but usually closes by itself after birth... they’ve been keeping it open with drugs so that the rest of her body can get the blood that it needs), and rebuild her aortic arch so that it’s big enough to supply the right amount of blood to her body.  He is looking ahead and described some problems that may arise and how he would plan to solve them.  He also didn’t sugar coat the risk of her being so small, and having trisomy 18, which carries other defects into the mix, decreasing the odds of survival compared to a baby born at term with no other health issues.  The chances of survival without the surgery is known to be so much worse though, and so that is why we are here, giving this girl the chance to make life as much as it can be, because she is absolutely worth it.

The baby: 

She was getting restless and wrinkling up her little face to silently cry because she can’t make noise with the breathing tube in.  So our nurse got the ok to give her something to take the edge off, and now she’s resting and looks much more comfortable.  I can’t help but cry for her in those instances.  And all throughout the day pretty much.  I can’t wait to look behind us and have this be only a memory.  

The parents:

I keep thinking of the little kiddos on the Trisomy parents Facebook page who are years old now, but all started off in the NICU with tubes and wires like Annelise has now. That is our goal for her, and it’s going to be a long hard road, but the prize is what’s worth it.  A repaired heart❤️

We heard a great sermon online from our church today that included some very relevant points.

Faith ushers in patience in the midst of the unknown.

Faith ushers in peace in the midst of anxiety

Faith ushers in hope in the midst of the seemingly impossible.

We were reminded that our biggest, seemingly impossible problems, are infinitely small to God.  He is bigger than all of it.  I’ve already seen Him move in my life, I have so many reasons to trust Him and be faithful that His ways are not my ways, but they are always for my good.

Father’s day has been spent in Annelise’s room.  Food doesn’t really taste good right now, so we ate in the cafeteria, and will go out for Thai food to celebrate Kevin’s first Father’s Day sometime in the future.  I’m so thankful to the people who have reached out to encourage him today.  We really have the best support system.🥰

Tomorrow:

Only one of us can stay in the room overnight. I plan to stay with Annelise, and Kevin will come back early in the morning so we can hold her one last time before the surgery begins, around 10am Nebraska time, which is 8am California time.  The surgery will take about 6 hours.  

Prayer requests:

-Healing for Annelise’s lungs, so they can be in top shape for surgery tomorrow

-Wisdom and steadiness for all the amazing medical professionals involved in the surgery tomorrow, and who will be caring for her after surgery

-general healing of her body, her pain management, and my heart’s desire is that she fully recover from this surgery and be able to breathe on her own in time

-For God to continue to get glory for Annelise’s precious life

-For Kevin and myself, it hurts to see her hurt 

Thank you for walking with us during this really difficult season.  I still have to pinch myself these days though and am so beyond excited that she’s with us in this season too!  Right now I can touch my baby, she’s warm, and breathing, and beautiful.