8/31 Saturday

https://youtu.be/yhyVW6sbZeA

Two steps forward, and here we go back again.  Annelise had a tiring day, but the little love wouldn't/couldn't sleep more than a cat nap here and there.  They changed a couple things this morning, so it's hard to say exactly what is going on and causing her to have lower oxygen saturation than she has had all week... Not to mention some concerning new behavior that is paired with the old eye movements that prompted the EEG that she got this past Monday.  The EEG was normal... but the doctors and nurses here have been very great at educating us on some signs of Seizures... and Annelise added rhythmic movements, and having her oxygen saturation go down during "episodes"... That wasn't happening until this afternoon.  Since Seizures in infants can look like "typical" behavior for a preemie or baby with brain abnormalities like Annelise... the nurse practitioner isn't jumping fully on board the seizure train yet... But I appreciate her looking into all the possibilities of what could be causing the change in behavior.  We are trying an easy quick test tonight of stopping her sprints on the trach collar, and putting her back on cpap mode of the ventilator.  So if the behavior stops... maybe she was tired and not ready for such long sprints so fast. If it continues, the problem is elsewhere.
I'm tired.  This is really hard.  My anxiety knows how to take the little unknowns and just take off full sprint. It's emotionally exhausting to have to reign in my feelings and thought process constantly.  I love that baby so much!
Waiting for answers is quite possibly the worst.
I have no idea what it will look like to have God strengthen us tomorrow and the next day.  I'm tired, I want Annelise to be able to rest and grow as healthy as she can be. I expect that God will show up in ways that surprise me but shouldn't... because of who I know God to be, and the power that He has, as this song reminds me, to move mountains with a word.  Surely He will use some of that power to fix my broken heart, to carry me in my weakness, and to continue to display His glory through our precious girl's life!

8/30

Here we are again, late at night with me trying to get my overloaded brain to figure out how to concisely deliver an update on all that has gone on for the past two days now... I know I don't have time for my usual way of just writing as I'm thinking... two days worth of that would be too many paragraphs for anyone! And I want to make it worth leaving the hospital to go back to sleep at the Rainbow House by actually getting some sleep! Still so hard to not be there with her. So here are the highlights and the not so highlights (mainly, the baby vomit) of the past two days ☺️
🌸Yesterday, Kevin and I did a trach change ourselves, and I put in the new trach!!  I did it!  Actually it wasn't all by ourselves, because I had to tap out after putting the trach in and let Kevin and the respiratory therapist finish up, because the adrenaline left over in my body was making me all shaky!😆
🌸Yesterday we started feeds!  This time no breast milk, just special formula.
🌸We got a NICU baby cam! So now we can check in to see how she's doing when we're not  there❤️
🌵Baby vomit🤢 Kevin was holding her when she spit up.  There's a chance of aspiration where she gets some in her lungs when this happens, so I hope it never happens, but I fully recognize that this is one of the more normal infant experiences that I will surely live over and over again. 😬
🌸This morning, the nurse practitioner was so excited for us that she came in to give me a heads up that Annelise's chest xray looked great!!  It has been a loooong time since we've heard the word "great" and "chest xray" together!
🌸We increased the amount of food she got today!  And I do believe our night nurse helped us to avoid another spit up situation. We also increased the time she spends on her trach collar.

She'll be getting another chest xray in the morning.  I'm on pins and needles and my brain is smooshed with optimistic thoughts and anxious thoughts about the future... will this be the beginning of the end of her chylothorax?  How much longer until we go home after that? Home?? Away from my nurses and doctkrs?  Eek! That sounds scary!
I have to keep calling back that perspective that gets away from me all the time!
Is anything too hard for the Lord? Nope.
Will He leave us to make future fransktjkns by ourselves? Nope.
Can I count on mercies and grace in the future? Yep!

8/29/19 Thursday

Hi friends! Annelise had a good and full day... But has her days and nights mixed up, which makes the evening update get postponed until tomorrow :) Goodnight! ❤️

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Wednesday - started feeds again! 8/28

Little miss Annelise has been quite grumpy today.  She's got so much going on that there's not just one obvious thing that is bothering her.  The biggest new thing that could be annoying to her is that she started feeds again today!! 🎉❤️🥳. We'll have a chest x-ray again in the morning to see if there's any increase in fluid around her lungs.  Today's x-ray looked great!
❤️

We were talking about trusting God's timing with the chylothorax issue, and our nurse shared this quote with us... 💜

This girl is getting some cheeks!! 

 She did manage to get some sleep in today

 This daddy/daughter moment was my favorite thing to witness today! 😍😍😍

Tuesday - 6 lbs! 8/27

Baby girl is now part of the 6lb. club, and she's 18.9 inches long!  Not bad for basically not eating for a month!  It's amazing what medicine can do.  Thank you Lord for TPN and lipids... but also thank you for formula and breast milk!  We have a chest xray scheduled for the morning, and if that looks good, we requested that we start on formula that they use interchangeably with skimmed breast milk for a chylothorax.  Since the skimmed mik hasn't worked the past 3 attempts... might as well try something new!  The plan, if all goes well, is to slowly introduce the formula, then if she can handle that for a week, try the breast milk again. We know it's in God's timing, and would love to know His ways, but we never will... So we work on building this trust muscle. ❤️
We had a relaxed day with lots of cuddles.  Kevin needed to work at the Rainbow House, so we missed him a ton. I'm getting really used to seeing him all the time!  It made me realize even more how lucky we are to be able to do this together.  It's a rarity in the NICU that both parents are able to stay like we have.
The evening was kinda hectic when Annelise spit up after what we think was gagging on the goobers that are in the back of her throat ("secretions" is what the medical people call goobers).  Luckily, the respiratory therapist was there when it happened, and it doesn't look like she aspirated/got any spit up in her lungs!  Hooray! Praying that Annelise works on her swallowing skills and gets really good at clearing her own secretions/goobers.
We'll keep you updated about the feeding!  Thank you for praying our girl through these ups and downs.  I owe a million and three thank you cards for the ways our friends and family are there for us right now! ❤️💖❤️💖

Monday's update 8/26

Fell asleep mid-post last night again!  This time at the Rainbow House in a comfy bed, so I didn't set an alarm and got a good night's sleep!  Can't wait to get back to the babe!  But wanted to tell y'all that she had a great 11-week birthday!  Despite almost being bagged just once when her heart rate and oxygen saturations dropped from an unknown reason☹️. She did so well the rest of the day though, and super excited to share that her EEG results came back normal!!  Thank you Jesus for no Seizures, and for the perfect blessing that this girl Annelise is to us!  We're more in love with her every day❤️

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Sunday 8/25

Another day of no changes... Just sticking to the plan of practicing 6 hours at a time on her trach collar, not eating, and waiting for her chylothorax to heal.

We discovered today that this girl Annelise looooves to cuddle!  She was fussy and crying in her crib, but as soon as she's picked up and in someone's arms, she's quiet and ready to sleep! I got a ton of quality time with her today, and Kevin did too 💖

The EEG is scheduled for tomorrow.  I'm not sure what time it will be yet.  Our prayer is that we get a definite answer of whether or not there is seizure activity in Annelise's brain.  We're also praying for her facial muscle twitches and jerks to go away, even if they aren't related to seizure activity, as these seem to bother her.

Randomly.... Annelise has a tooth coming in! 😲 On the bottom on the left side, there it is!  I'll post a picture that I also posted last night so you can see the little tooth!

Here's the tooth 

Saturday 8/24

No changes were made to Annelise's care plan for the day, as we're just counting down the days until we try to feed her again to see if her chylothorax has healed enough to not produce extra fluid in her body again.  I never learned about the thoracic duct in school.... but I sure have had a memorable life lesson in how important it is to keep intact!
We have an EEG scheduled for Monday to check for seizure activity. Annelise is having episodes of what look like muscles twitches and spasms, along with unusual eye movement.  I have been asking about possible Seizures for awhile now... And was given the homework of getting on video the episodes that I was trying to describe.  I finally did get one with some eye movements that made the neonagologist agree to get an EEG to see if there is any seizure activity that goes along with those movements.  Today the facial movements in her jaw and body tensing were becoming more exaggerated and seemed to bother her.  Kevin held her and she went right to sleep!  She definitely loves hanging out with her people!  She loves it when her favorite nurses talk to her too.  When her face isn't being taken over by twitches... She pays close attention and has really good eye contact. As she gets older, her personality is really shining now.  She's a sweetie and we love her!  There's a possibility that the muscle twitches are just her immature central nervous system misfiring. I'm glad we're getting the EEG done so we can know for sure.
Our NICU nurse has special skills and was able to get the "God's got big plans for little me" onesie to fit Annelise today!
Funny story... I thought I bought it for Annelise, but my friend actually bought it and sent it to her!! It came on the same day as my Amazon order... and was the exact onesie that I had put in and taken out of my Amazon cart more than once, because I loved it so much, but thought it might be too small!  We were meant to have this meaningful onesie with such a meaningful message!  I just love it!  Way better story than if I had just purchased it online. 😍  God's got big plans for this baby. Seizures or not, we'll figure it out.  Every day with her is a gift we were told over and over we would likely not to get!❤️

She was not very excited about the photo shoot we tried to make happen today! 

Still not excited about photos 😄

• Our extra amazing nurse set up Annelise with her stuffed animal friends❤️ 

Friday 8/23

We had one of the laziest days that we've had so far in the NICU today. We're waiting for the fluid level around her lung to decrease.  She has a chest x-ray scheduled for 4am. We got to hold her a lot today which was lovely❤️ I'm back at the Rainbow House to get some real rest.
I'll leave you with one way that I know Jesus loves me... It's still so hard to leave Annelise at the hospital while we go to sleep elsewhere... On the way to the car I told Kevin that I hope there are cookies at the Rainbow House. Often cookies and snacks get donated and are available in the kitchen.  Well... not only were there cookies available... they were girl scout cookies with instructions to take the whole box!!  Thin mints heal the heart! 💖

8/22 - Stopped feeds again

Remember yesterday when I was being dramatic and talking about how important it is to suck all the goodness we can out of the good days because we don't k ow what tomorrow holds?
Wellllll, after Annelise's 4am x-ray, they stopped feeds again because the fluid is coming back around her left lung.  Stopping her feeds should stop the fluid, so they don't have another x-ray planned for 5 more days, when they will consider starting feeds back up for the 4th time.  The current neonatologist wants to get this chylothorax issue resolved before we talk about her final planned procedure, the g-button.
Today:
❤️ Annelise remained on 6-hour sprints from the ventilator on the heated trach collar.
❤️ She had a grumpy night and morning of falling asleep, but not staying asleep... Until I held her, and then she took a 2 hour nap🥰 Thanks for helping me feel useful, baby girl!
❤️She got some foam rolls from the Occupational Therapist to wear half time throughout the day to help gently stretch her hands to make them not so clenched.

❤️❤️❤️❤️Biggest deal of the day is that Kevin and I changed her trach for the first time!
I took the old one out, and Kevin put the new one in and did an amazing job! 👏🎉💜😁
I couldn't help but cry happy tears of relief when it was done because we helped her and didn't hurt her!!  I know there are a bazillion people who do trach changes all the time and say it's no big deal.  I hope that will be us soon, but for now, the first ones.... It's a big deal!
We are becoming new people, getting comfortable with something that was so uncomfortable before.  I remember being pregnant and being so sure that being a trach mom would be too much for me.  So happy I was wrong! 😊. It's part of those mercies that are new every morning.  So grateful to God for going before us, being present with us, and being our strength. ❤️  The timing of the chylothorax issue is in His hands too.  We can be confident that God sees Annelise, knows, and loves her even more than Kevin and I do, which is a lot!! I can be broken at the delay in feeding her breast milk, and fully confident that the Lord will show up and carry us through this at the same time.
I got a onesie that came in the mail and is too small for her already (love that problem!) that says "God has big plans for me".
The words are true for us all, really.  I can't wait to see His plans unfold for our family. 💜

August 21st

I need to start these updates earlier in the evening, since miss Annelise has been wanting to party late into the night💜

Today was a good day.  What we've learned in the NICU is that on good days we need to be intentional about getting all the joy possible out of the day.  We don't know what tomorrow holds, but right now it's good.
We celebrated the day by decorating Annelise's crib with lights! Unicorn lights for our sweet baby! I love them!  It's nice when little things can cheer up the environment.

Annelise has been doing well with the small feeds and small sprints on her trach collar.  She got bumped up a smidge on both counts today, and will get another x-ray tomorrow morning to see what's going on around her lungs, and if the extra fluid has stayed away.

This morning she was super grumpy when she got woken up, and was giving the nurse who woke her the stinkiest stink eye.  It was so cute! I tried to take a picture, because she kept doing it to all the doctors who came in to do their morning check-up on her 😂
I got some of it too, but then after a nap, she woke up on a better side of the crib, and I got one of my most favorite pictures of her yet!

This is her mad face 😍