Sunday 8/4

Happy Birthday to my brother, Eric!  Happy we got birthday smoothies when he and Melanie visited a couple weeks ago❤

Baby girl is resting much more comfortably today!  The current issue that needs to change is her CO2 levels.  We were used to them being too high when she was on the cpap nasal cannula.  Now they are too low, which isn't good either.  She also still has lots of fluid draining from the chest tube.  If her chest tube would stop draining, it can be removed, and at that point we can hold her! We're trying to connect with her as much as we can without picking her up, but I can't wait for the day when we get to rock with her in the chair!

• Regarding our mental health... I wish I took the time earlier to decorate our room with all the cards we've received and sweet drawings that our friends' amazing kids drew for Annelise.  I was using room-decorating as a motivator for getting our bills organized and paid... so that took awhile!  But look at it now, so cheery!😍😊🥰

Evening update:

I haven't taken a chemistry class since high school, so I'm in awe of what I've been learning about how complicated all of the chemistry inside our bodies is.  They have been working hard here all day long to try and figure out how to raise the CO2 levels in Annelise's blood.  One thing they tried to do to raise it, actually resulted in a decrease of CO2!  The chest tube and giant amount of fluid she's been losing over the past week are not helping the situation.  

The last test they took showed slow improvement, so we'll continue this plan, and pray that all is well by the morning.

8/3 - Rough night of Withdrawals

We've been battling withdrawal symptoms all evening😔  Her heartrate was up to 200! Before the weaning of sedation drugs, her heart rate was usually in the 120-140's
 She was super jittery and agitated, but finally seems to have settled in after raising the amount of the drug that she is getting back up closer to what it was before, and giving her a blood transfusion to raise her low hematocrit levels.  What a day!  I know so many people have to go through withdrawals, so in my head it's no big deal since we know what it is... tomorrow at rounds it will probably just be a few sentences from the doctors who see this every day of "oh, she didn't tolerate the wean?... ok, let's go more slowly...." and then on to the next thing.... whereas tonight in the middle of it, I can't get my brain past how it's the worst thing in the world to see my baby so so uncomfortable!
It seems the worst has passed.  I can't wait to be on the other side of this drug and not need it anymore!!
Shout out to my hubby who is the best at comforting his sweet Annelise!  What a beautiful thing to have witnessed that couldn't have happened without first pain being present in the story.  Now, if I was doing the choosing, I would choose no pain!  But since that wasn't the way the story was written, I'm super grateful that the hard time was made sweeter by a daddy growing even closer to his girl!❤

Baby fever. Not the cute kind

We're hanging out on the edge of a baby fever today, unfortunately.
Not that anyone would ever say it's a good time to be sick, but Annelise has enough going on with withdrawals from her sedation drugs, and the chest tube that isn't slowing down on drainage from her pleural effusion... we do not welcome a fever.
They'll check her blood to see if anything is off there.  Meanwhile, Kevin and I are sitting with her and rubbing her little forehead to try and keep her comfortable with all that's going on in her environment.
The ups and down keep coming! There really is no more accurate analogy for the NICU than a roller coaster.  Even after changing everything about her airway by getting the trach... the alarms have stopped ringing on her monitors... but her temp is now on the rise. The challenges just morph into different problems.
I'm getting a lot out of the practice of using my words to give God what is already His, and start with Annelise's head and move down to her toes, letting go of control over all parts of her body, including the fluid that is leaving her body via the chest tube.
I also love the way God is using the mom friends I'm making here to make sure I feel how  He loves me.  We share via text things that are on our hearts, and the theme for yesterday and today seems to be living in the power of God's love when anxieties try to invade our space.  I'll post an amazing new song that was shared at the bottom of this post.  It's powerful to see the verse that talks about God giving peace that surpasses understanding (Phillipians 4:7) being played out in real life.  On their own, none of these moms has a reason to have so much peace that it overflows so that they want to share it with others.  But because of who God is, was, and will be in the future, even during these ridiculously intense days, we can experience peace in knowing we are loved and seen wherever we are at.
We're thanking the Lord for this day with Annelise, our miracle baby!  We're praying that we can give an update very soon that says she's doing so much better.  You don't need pictures of a grumpy baby that doesn't feel good, so I'll share the cutest pics that I took last night of her smiley self 💞💗💖💞
Please join us in praying for fever and any possible infection to stay away from Annelise, so that she can stick to the business of weaning from her meds and healing from the chylothorax.
Thank you!💖

Song link
Update:

• Great news!  Her bloodwork came back with no signs of infection, and they gave her a bit of the drug that they had been weaning her from today, and her withdrawal symptoms decreased, and temp returned to normal.  I'd much rather have the bummer of having to wean off meds more slowly, than have the bummer of dealing with getting sick from a bug or infection!

Where did August come from?!?

• Today we took a break from weaning Annelise from her sedatives and pain meds because she is having small withdrawal symptoms like occasional tremors.  So far she has done really well adjusting to medication changes as long as they are gradual.  I'm adding that to the  blessings list when I count my blessings.

I'm also grateful for a clean baby today!  Kevin did a great job with her sponge bath.  Neither of us love giving baths (she's so little! It's scary still!) And Annelise doesn't seem to super enjoy getting them... but none of us want to be the stinky kid in the NICU!
I'm spending more time connecting with other mama's of babies with trisomies here at Children's in Omaha. There are 12 of us altogether from around the United States!  Some of the babies here I have been following for months on the trisomy parents Facebook page.  They ran into road  blocks for heart surgery at their home hospitals... and so they end up here!  Knowing these ladies doesn't help me avoid the NICU extremes one bit, since now I know and love their children too, who have up and down days, just like Annelise does!  But it's every bit worth it to be part of their tribe here! They are a bunch of Jesus and people loving ladies.  Their perspectives have been comfort for my soul on multiple occasions!  They have great husbands too... but much fewer vof them can have their husbands with them full time here (another blessing I will not overlook!)
Kevin and I took a walk outside of the hospital for a change of scenery today.  I have passed the 6-week mark after my c-section, so I'm trying to be a little more active.  The midwest weather was good to us today and it wasn't too humid😅
Annelise was sleeping comfortably when we got  back from our walk.  She has had less output from her chest tube today than yesterday... but she still has way more fluid leaving her body through the tube than the doctors would expect to see.  The plan is to leave her off of feedings for a few more days.  She is still sedated enough that she spends much of the day sleeping, so I continue to hope she doesn't notice how hungry she is.  Tomorrow we might try to hold her for the first time since she got her trach.  The chest tube freaks me out about holding her, but with the nurse's help, it will probably be really amazing!
She is doing well with her trach, and we got our first lesson in trach cares today!

Prayer requests:
- Infection stay away!

- Chylothorax that's dumping so much fluid out through her chest tube... resolve and be gone!

- Growth and muscle tone for Annelise.

Those are  the major issues right now.  While we're waiting for the next steps for her health, we celebrate every day with her!🥰😍🥰😍

.

July 31st - The First Trach Change

I'm not going to say it's more comfortable than the bed at the Rainbow House, I'm just saying that I have no problem going right to sleep in the reclining rocking chair in Annelise's NICU room.... which is why this update never got written last night!
I can't go back to bed (or chair, for tonight!) without documenting the day of her first trach change!  It happened early in the morning, and was done without any issues.  Now that she's passed that milestone, we can hold her again and start weaning off the sedation meds!
Holding is still tricky because of her chest tube.  The tube continues to drain fluid ☹, and today the output increased above yesterday's so much, that they gave her extra fluids in the evening because she was showing signs that she needed it like a high heart rate.  She responded well to the fluids and looked a lot more cozy after that, but she continues to drain from the tube, which means that the chylothorax is not healing yet.... which leads to remaining without food in her belly, just getting nutrients from an IV.  There is no set amount of time that it takes babies to recover from a chylothorax... we're praying that it resolves soon, so we can get that chest tube out!
I'm excited that Kevin is taking the day off tomorrow.  I'll be sure to get some good photos to document the day tomorrow!  Here are a couple of her snoozing tonight 😊
Her nurse and I decided that she looks like a quite proper baby with her little pinky up like that 🥰🥰🥰

Children's Omaha Article

Here's an article from Children's centered on the Trisomy program that they have going on here.  We are actually grateful that the hospitals in California were so honest in the midst of their ignorance, and told us flat out that they don't do heart surgery for babies with T18.  That heartbreak allowed us to come directly to Omaha to deliver, and skip the experience of being on high alert due to the need to advocate and fight for the medical needs of Annelise if we were in another hospital away from the  culture here.  Everyone here has been on her team and for her success since before she was born.  My prayer is that the professionals involved would feel the blessing that their hard work is producing, that they would know the God whose work they are doing, and that the Lord would give them the energy and the drive to keep going, so more babies with Trisomies can be helped to spend more time on this earth and fill up the hearts of their family and village who supports and loves them.

• Children's Omaha

Trach Day 4

 Day 4 with the trach, and day 4 of being able to look at her beautiful face because she's not on her tummy all day long due to her airway getting blocked by her tongue in any other position.  Annelise slept through most of the day, as she is still sedated and recovering from her tracheotomy.  Tomorrow morning will be her first trach change!  That seems to be a big deal because after the first trach change, done by the ENT surgeon himself at her bedside... then we can talk about weaning her off of the sedation, letting her move more, and the respiratory therapists take over her trach care, leaving ENT to now just follow her recovery progress.
Praise the Lord for no infections!  This continues to be a great desire of our hearts, especially as she is recovering from surgeries and healing the chylothorax.  Hopefully that chylo will be gone soon and then Annelise can have real milk in her tummy again!
After the trach change tomorrow, Kevin and I will also start learning how to be involved in Annelise's trach care.  We're both required to be proficient in caring for a trach before we can leave the hospital.  This is the scariest part for me, but we've found peace in some very unstable circumstances before, and with God, it's totally possible!
She will always be worth it all, a million times over, and our lives are so much better because we get this time to be her parents!!🥰
Our dear friend, Julie, made an amazing onesie for Annelise that captures that truth exactly:   love doesn't count chromosomes!