9/15 Counting down in Omaha

here's excitement in the air here!  The decorations are down, no changes are being made to her care plan as she is stable... One of the neonatologists who isn't working with us this week, stopped by just to wish us well and say goodbye. ❤️ Nurses who have cared for her make sure to come in and the consensus seems to be that it's a really good thing we're getting out of here before the snow comes! ⛄
Annelise had a great day full of sleeping and again in the evening had a bit of really awake time.
We had a photo shoot tonight in her Children's onesie. The faces she makes crack me up, her eyes are so expressive... I just love her so much! ❤️
Dinner was cut short tonight when I was in the cafeteria, but was checking my phone to watch Annelise on the NICU bedside camera.  That's when she started throwing her arms all over, and I realized that the bow headband had fallen over her eyes! The poor thing!  I sped past people on my power walk back to her room!  She got over it quickly thank goodness.  Good grief... the price of baby fashion!

Kevin made it to Utah tonight!

Tomorrow is our last full day in Omaha!

Kevin goes back to CA! 9/14

Things are very different today!
We woke up at the Rainbow House, and finished packing up... we played Tetris with all of the boxes and bags in the car for quite awhile... then Kevin got the dry ice by himself while I walked to the hospital.  I couldn't go with him because there's no room for anyone but the driver! We packed up almost all of the breast milk in two big styrofoam containers that were donated to us by the Omaha Steaks store.  Only one bag was left behind!  I can only bring one duffle bag on the plane with me, and it is going to be really full, so I won't be able to transport it all... but we got really close!  And I'm happy with that☺️. Kevin is going to get new dry ice tomorrow to keep it cold!
It was strange walking to the cafeteria together this morning.  Walking down the hallway that we've walked dow for the past 100+ days, but now for the last time!  I'm getting excited to be back home!  But we are leaving behind a very special place, and there's a loss there!
Kevin got out of town before lunch, like he wanted to, and I went to rounds on my own.  I found out that Annelise's phenobarbital levels were low again this morning, so they added a new drug to keep the seizures away.  So far, it has been working!  Annelise does seem sleepy a lot of the day, but she has had a few long stretches of being very awake too today, so I'm happy with how she is responding to it so far.  The specialists at Miller Children's will take over the seizure watch in just 3 more days!
I hung out in Annelise's room where it was very quiet without Kevin. I miss him already!  With this tiny glimpse of what it is like being on my own at the hospital, I'm reminded of how incredibly rare it is for dads to be able to stay like Kevin did.  We are so thankful to have had this time together.  I wanted to write something about how God knew I would need Kevin with me... but then I think about the women that I've met here... And God knows they needed their husband's too.  I'm just so grateful that this is one of the ways that God wrote comfort into our story. We didn't get the comfort and simplicity of a clear airway without a trach for Annelise, but we are so fortunate in other ways.  I guess the lesson of don't compare and be happy with what you have fits here. And again as always, we have our baby girl with us!  We'll learn how to care for her at Miller Children's, and hopefully soon, be ready to move our family on to go home to our House!
I can't wait to see our people!  And eat an In-N-Out burger!!🍔

Kevin made it to Cheyenne, and will keep moving on tomorrow!

Kevin thought he might be getting sick, so I threw a mask on too just in case! 

It's time to get moving! 9/13

Kevin leaves for California in the morning!  Praying for another boring cross country drive, just like the one we took coming out here, back in June!! It's surreal that he's leaving, and that the babe and I are scheduled to follow on Tuesday! I'll give more details tomorrow when I don't have my wonderful, handsome, amazing, lovable husband in front of me.  A hidden blessing is all of the time we've been able to spend with each other.  I'm going to miss him being here!❤️❤️❤️
We gave one of our beloved nurses this shirt with Annelise's footprints on it today. The nurses here are skilled and capable... but there are a few that just are extra amazing.  The hard part of leaving will be saying goodbye to these people!
Praying that Annelise continues to remain seizure free, gets lots of rest, and that we can somehow get all of the breast milk loaded in Kevin's car tomorrow before lunch!

 This is all the milk that Kevin will be transporting home! 

Goodnight 9/12

Our friend baby Grace came through heart surgery like a champ and is doing well! Thank you for praying for her, and thank you Lord for her life!

Annelise had a pretty relaxed day❤️.  Any issues she had were related to poop... And I don't really want to update about poop 😒... let's just say her issue worked itself out! 😆

She slept a looooot. But woke up wide-eyed in the evening!

Morning of 9/12

Good morning from Omaha!  We won't be able to say that for too much longer!
Annelise had a great night with no signs of seizures! The level of the one phenobarbital drug in her system seems to be staying at the needed level for her to keep the seizures away. She is sleepy, but also woke up this morning and was looking around ❤️

We have another prayer request for a heart sister baby friend today!
Grace isn't part of the trisomy tribe, but she is our NICU neighbor and she is going for open heart surgery at 10am Nebraska time this morning!
Let me tell you about Grace's mommy.  She is a strong mama with an awesome family, whose love and faith in Jesus just overflows and encourages the people around her.  I thought it was my own idea to strike up a conversation with her in the NICU lobby one day, but I really do think it was God's timing❤️
We're praying for baby Grace's parents and siblings as they wait for her surgery to be done, and for the surgeons to know the Lord is with them today, to be rested and ready for an amazingly incredible day at the "office"!

9/11

Goodnight all!  We're praying for a seizure-free night for Annelise.  Last night they came back frequently, but this morning they got her dose size high enough to keep them away.  She slept for most of the day as a result, but she needed it again after the rough night.  She sure is cute through it all though! ❤️

9/10 3 months old and a g-button surgery **and an update

Update: She's out and all went well! She's already back in her NICU room resting. ❤️ Whoohoo! They will start feeding her in about 6 hours!  

No seizures all night!  Annelise woke up with smiles😍 She's getting ready to go get her g-button surgery now.  they are getting her ready for the field trip to the OR at this moment... and our case manager says insurance approved Annelise and I to get a medical flight back to Long Beach to be transferred to our home hospital... maybe as soon and Monday!? Hopefully Tuesday.  Kevin will plan to drive the car back early as soon as we find out when we're leaving for sure.
There are so many emotions! Surgery😬leaving😭coming home🤩 so many! 🤪
Thankful to know that God is the same in California and Nebraska! Whatever the next steps are, they don't surprise Him, and He won't be far from us. When we look for Him, we'll find Him. Little picture: lots of feelings!!! Big picture: we've got this, rolling with the plan.

We couldn't love our 3 MONTH OLD more!