Sunday, June 23rd

Post from Facebook:


We’re holding on to this day and all of the little giant victories that Annelise experienced today. 😊 We asked for prayer for comfort for Annelise while she had her breathing tube tape and placement changed, as well as the dressing changed for a picc line in her leg.  I am so thankful for you, who jumped on board and asked the Lord to help Annelise feel His calm.  We felt it too.  Even though I know without asking, God is with us... my prayer was that Annelise, Kevin, and I would all feel His presence and peace.  Quite often, my brain and the anxieties that fill it, get in the way of me noticing and accessing that peace that comes from knowing and loving Jesus.  Kevin and I were in the room while her professional people were caring for her, and the nurses commented more than once about how well Annelise was handling it all!🤩  Her heart rate showed that she wasn’t overly stressed out by the events, and she went right back to sleep after they were done.  Compared to the last time her tape was changed on her breathing tube on Thursday, today was an absolute snooze fest!  She didn’t fight having the tube in her throat, and her calm carried over into our calm... and it has just been the best day.🥰 She continues to be weaned little by little to lesser oxygen needs on her ventilator.  She didn’t gain any weight today, but she didn’t lose any either, and her tummy doesn’t seem to be upset by the increase in food. 🥳🤩😎.
The ways to pray that I can see in the near future, is for her head circumference to not grow, and because God can handle miracles, for her to not need a shunt placed by the neurosurgeon. Praying for appropriate growth in the rest of her body, and to safely wean off of the ventilator entirely!
Praying also for her heart surgeon, Dr. Hammel. He is doing SO much good here.  Praying that he can have some margin in his life to enjoy his home and family, as well as his work, so he can keep on changing the way that babies with Trisomies are treated, and provide life changing operations for families from all over the US! 💪❤️

https://www.childrensomaha.org/provider/james-m-hammel-m-d/

June 19th - It was a boring night! Which is so exciting

They call the NICU life a roller coaster.  We’ve already experienced a free-fall (the reason I don’t do roller coasters in real life, btw), but today, we get to coast!  So thankful for God’s gracious gift of a night of healing for our babe yesterday.  She was doing so well getting oxygen in her body, that they stopped having to give her extra.  Her ventilator is still doing almost all of the work of breathing for her, but there are times where she is starting to initiate her own breaths again, according to the monitor that she’s hooked up to.  She was really good at that in the NICU, so we hope to get back to that.  During rounds this morning, when multiple specialists get together to go over her day, and make plans and changes for the future, they discussed how well she’s doing, and that from a post-op standpoint, if she has another good day today, they would plan to return to the NICU to grow and continue recovering by TOMORROW!

I had the sweetest answer to prayer in the middle of the night last night.  I woke up to pump, and noticed that her heart rate had increased, and she was making a sad face.  Her nurse wasn’t nearby at the time, so I opened the little door to her isolette, and sang to her for the first time.  Her heart rate went down and she stopped trying to fidget, it was an amazing feeling to discover that she can probably hear me (we don’t know for sure how good her hearing is yet), and that music might be a way to comfort her.  There aren’t many ways that I can comfort her right now, so to see her respond with calming during the night to my singing and her playlist from my phone, fills my heart right up! ❤️🥰❤️😍

1 week old! Heart surgery day

Annelise is now in surgery, being worked on by Dr. Hammel.  Kevin and I are in a private waiting room, and the nurse calls us with updates.

3pm update:  They have started repair of the aortic arch, and will be getting ready to repair the big vsd and finish the arch repair now.

4:30pm update:  They have finished the planned procedures. Now before they complete the surgery, they’ll do another echocardiogram to check out their work, and then start closing her up!  Praying for seemless work and no infections during recovery!


5:45pm update:  All of the team is still with Annelise.  She is still bleeding, which they tell me is not too uncommon.  They will give her more blood products and wait for her to stop bleeding.  The nurse tells me she is still doing great.  The surgeon is still watching, and could possibly need to leave her chest open, to allow for swelling.  She is so little, there isn’t much room in there for her heart, lungs, AND swelling.  I only recommend googling how they can leave a chest open after surgery if you have a strong stomach!  To be continued.

6:10pm update:  Dr. Hammel just came into the waiting room!  He’s done repairing her heart!  He said she’s got a repaired vsd and new aortic arch, and all looks good, with good heart rhythms, so she won’t need a pacemaker (that was one of the risks).  He said the bleeding seems to be under control now, and so he decided to close up her chest (yay!) and the rest of the team is getting her ready to go up to the PICU, where we’ll eventually get to see her tonight!  A nurse told us to prepare to wait 1-3 hours for them to get her settled... so we’ll go up now to a new waiting room.  She still has very thin blood, so they will watch her and give her more blood products when needed. Praying her blood gets thicker soon, that it all drains properly, and no extra blood stays in the body, needing to be removed with a new surgery (another risk for the near future).  Thank you Jesus for gifting these doctors and nurses with so many skills and a passion to help babies like our irreplaceable Annelise!💖🥰💕😍❤️

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.

Saturday, June 15th

Friends and family who are praying with us, will you please specifically pray for our Annelise’s lungs tonight?  She’s only really got one lung working well, and it’s causing her to have retracted breathing, and work really hard for those breaths, even with the breathing tube.  I am forever grateful to be in Omaha with these brilliant doctors and nurses.  They worked together to quickly figure out a new setting for her breathing tube that would give her a little more comfort, and they do have multiple options that they haven’t tried yet, because she’s not at the worst of the worst by any means... but as I write that and know it in my brain... my heart refuses to get on board, and watching her little chest work so hard hurts me so much!  I was obsessing over her heart rate going up, and was feeling like I needed to be watching the monitor as if my eyeballs being on it could will the numbers to change.  It was a really amazing feeling when I got to cuddle with her again, and I saw her heart rate return to a lower number for quite awhile.  I felt like I had super mommy powers to calm her down for a bit!🥰
This song was in my head while I was watching the nurses figure out what route they wanted to take with Annelise’s lungs today... the part of the song that goes “Jesus bends to hear you breathe
And His tender hands are holding you tonight
And His heart is ravished when you look, when you look at Him
And oh, the endless mercy in His eyes”

I felt like the Lord was singing it to her, as well as to me, reminding me to look to Him for His plan for Annelise’s life.  I need to cuddle up to God and let His super powers calm me down too!
https://youtu.be/vHjPHT-homc

Kevin and I are getting dinner and attempting to relax now.  We love you guys and are so encouraged by your love and notes and prayers❤️

Friday, June 14th

Today was a mixed day that included some stressful moments, but also some awesome and amazing moments too.  We’re gearing up for the heart repair surgery next week.  Monday, most likely.  We’re asking the Lord to heal Annelise’s lungs, so they won’t sound so “coarse” according to the nurses.  There is some irritation going on, and the top part of her right lung has collapsed a little.
The best part of the day was seeing my amazing hubby cuddle with his baby daughter!  And also, we began feeding her my breast milk today!  So far, so good, she’s being fed through a tiiiny tube that goes up her nostril and into her stomach.  Can’t feed her by mouth when she’s connected to a breathing tube. They will consider removing the breathing tube after the heart surgery.  One day at a time will get us there!
Thank you for loving us and praying for our brave girl!

Thursday, June 13th

It looks like Monday will be the day that Annelise goes in for surgery to repair her heart.  This hospital is so amazing, and they want to give us as much cuddle time with our girl before heart surgery as we can get ❤️. Today was the first time I held her, and I don’t even have the words to describe how it felt to sit with her tiny body resting on me.  So many feelings!😍😍😍 Grateful down to my toes for being able to live and breathe in the moment that for the past 6 months, I wasn’t sure would ever happen.
I’m having trouble finding words, so I’ll just leave you with pictures!