A long Sunday 7/14

We had a day full of stare-downs with the heart rate/oxygen saturation monitor again today.  While I’m getting more desensitized to the ordeal now... since she so often drops in O2 sats... I know the drill... the nurse comes in and checks for her positioning, maybe helps get some junk out of her throat... or sometimes they just walk in the room and the numbers return to normal on their own!  But even though we’re becoming familiar with the scenario... it still raises my adrenaline a little each time it happens.  So after multiple repeat alarms... it’s a stressful day!
Dealing with the emotional intensity without much sleep caught up with me today. I’m just plain exhausted.  I hate leaving Annelise though.  It’s nice when struggling with something, to find others that know about those struggles too.  A woman who has a 16-month-old with T18 has a Facebook page that I follow... and she posted a video that mirrored my feelings today as she was getting ready to go out of her house to have a day to herself for her birthday.... she talked about the thought that she knows is silly, but it still creeps in to her mind when she goes out... the thought that her daughter will one day die, and the errands and doing stuff for herself can wait, so she should get back home to soak up every moment that she can with her daughter.
Kevin and I were just talking about this tonight.  Trying to figure out what is healthy and what isn’t for us in this season.  Being in the moment and treasuring all the cuddles we can get with Annelise is healthy... but treasuring ALL of the moments to the point that sleep is being ignored for fear of missing a moment is not healthy.  I appreciated the other Mama’s Facebook post today including her solution to the anxiety that comes up around leaving her daughter for a time... Proverbs 3:5-6 “Trust in the Lord with all your heart and do not lean on your own understanding. In all your ways acknowledge Him, and He will make your paths straight.”
God has put so many people in our path to help us both tangibly and emotionally.  Kevin and I can see how the Lord has been setting up our support system for this moment in time long before we even knew we were pregnant!

The days and nights aren’t easy.  Annelise cried for hours today before finally being able to sleep, and her sleep has been interrupted by, in my opinion, way too many episodes of her heart rate and sats plummeting together.  The good news is, she’s sleeping now, and she has bounced back after every “episode”, and she gained some weight!  Welcome to the 4lb club, Annelise Faith!🎉🥳 Her head circumference increased a tiny bit, but not much today.
Prayer for tomorrow includes a conversation with the neurosurgeon about the results from her head ultrasound, blood gas tests, and a stim test in the early morning.. which tests whether or not her body can make cortisol in response to stress.  Praying for peaceful sleep for our whole family tonight, and further wisdom about how to navigate self-care in this season.  Even in these valleys, God is so present in our days, and for that, I am grateful and in awe of all He does for us little people whom He also creates on purpose, just like he did Annelise.💖

July 13th - Saturday

This girl and her face plants!  We’ve watched her get into them, and get herself out of them independently... makes sense that Kevin and I together would spawn a goofball baby 🤪🥰
Silly girl is so cute in her new dress!😍
Fun fact: her O2 saturation levels are amazing when she lays like this!  Maybe it’s more than goofing around... maybe it’s easier to breathe (with her cpap nasal cannula) in this position...🤔

Evening Update:

Today was a good day.  We got some hours of cuddling with both mom and dad in the afternoon.  Annelise didn’t cry as much today as she did yesterday, and she slept for long periods of time.  Her head didn’t grow in size again!🎉  Bummed that she didn’t gain any weight... that’s what everyone is waiting for her to do here...but she also didn’t lose any weight either, so that’s good!

I had a fun outing to Hobby Lobby to pick up some crafting supplies this evening.  That’s the “me time” I can get while in Annelise’s room with her.  I typically like to slap tons of glitter on all of my art projects, but that’s a big nope here.  I’m not going to be the one who brings a glitter mess into the NICU!  

I’m so happy she got more rest today, and hoping we can all catch up on some more rest tonight too!  

Goodnight all!😴🥰

12th of July - Restless times

Good morning from Omaha!
The night included some sleep, but Annelise doesn’t stay comfortable for long lately.  She wakes up and tries to lift her head and move around.  For a baby who has general low muscle tone... her neck didn’t get that memo... she’s strong there!
She got some holding time with me from midnight to 1:30 to try and calm her. It worked for awhile until it didn’t and we put her back in her bed.  She was comfy for a few hours and has been keeping everyone on their toes this morning, searching for her most comfortable spot to get to sleep in.
I got about 3 1/2 hours of really good sleep last night... so a nap is definitely in my future today!  My body is overloaded from being so tense while Annelise has been so uncomfortable.  I’m listening to music and filling my mind with how amazing it is to have these days with Annelise... how she’s part of God’s plan, and how He is here giving us the strength we ask for to get through this rough patch.  It’s like Kevin said... maybe God’s letting us have Annelise and go through  struggles with her not to show that we can do it, but to show that He can do it.
We’re trusting in His promises and His perfect timing to get us through this morning and day.

Evening update:

Introducing... Annelise’s blooming personality! 🥰.  Her nurse made a comment that she’s a “straightforward little lady” and doesn’t waste any time telling somebody when she doesn’t like something.  If she doesn’t like how we placed her in her bed... she does her best to move herself!  She has been lifting her head up and back to a position that I don’t think looks comfy, but she seems to like it because she keeps doing it!  Now, in the process, since she has that tongue that gets in the way of her breathing easily... if she moves her own head, she often gets into a position that limits the oxygen delivery, and then the oxygen saturation in her blood goes down, the alarm on her monitor goes off, and a nurse hurries into the room to help her.  I think we figured out a way to place her that will make it a little more work for her to lift her head, so hopefully she’ll stay put for a little while and get another good nap tonight.

Sleep finally came for Annelise today 💖😴💖

She had quite a few good long naps, and when she kept crying, Kevin got to hold and comfort her, so she slept some more on Dad 🥰😍

I love that Annelise is comforted by human touch, and seems to respond to that connection by relaxing💖

I got to go to the Rainbow House and get a good nap, and even watched some “Fixer Upper” while I did some laundry.  The laundry included a new tiny dress for our cutie.  Bath day is tomorrow, so I’m hoping she’ll be feeling good and want to play dress up tomorrow!  If not tomorrow, then another time soon.

Annelise lost 10 grams today, but a big win is that her head circumference stayed the same!  No increase!👍 Praise the Lord for the way He’s sustaining us and giving us the peace we ask for, so we can continue trying to live in the moment and just love on this baby girl!  I had moments today of getting way ahead of myself and worrying and even being sad about future things that haven’t happened.  

Counting the blessings that we have going on today is helpful in bringing my brain back to the moment and away from dwelling on worries about the future.  While I could easily make a long list of things that I’d like to change.... we have a full column under the “blessings” heading too.  At the end of the day, I’d much rather look back on the time I spent with Annelise and know that I soaked up all her precious squeaks, sweet cuddles, watching her be cared for by her amazing dad, her bright eyes, and even all the poops that mean her insides are working the way they should!

July 11th - Not the most restful of days

Annelise isn’t feeling so hot today.  She has been restless and crying off and on all afternoon.  Not getting much sleep at all.  I don’t know if I mentioned that the ENT found that she has left side vocal cord paralysis... so we don’t get to hear much from her, except when she sneezes or cries a lot, there are some sweet squeaks.  Talk about all of the feelings!  Seeing her cry is like a punch in the gut, but hearing her tiny sounds makes my heart just melt at the same time!
We finally decided to give her some Tylenol.  Praying that gives her some rest this afternoon!
Today was the day that I was going to get the mundane paperwork stuff done and go get her birth certificate... but I can’t leave a crying baby alone in her hospital bed!  Kevin is working hard for us today, so I got to put off the paperwork until tomorrow, and snuggle with the baby all day.  She really does have a lot to cry about!  There’s a lot going on in this little girl’s life!  It’s all for her future though, because she’s worth giving it everything we’ve got❤️

Around 7pm she finally dozed off!

We have a 1-month-old!!🥳🎉🥰

We have a 1-month-old!!💖🥰🎀😍🌷. Annelise had a great night last night, and pooped on her new outfit, because she likes doing typical baby things too!
Not too much changed in her care plans this morning.  Her head circumference did go up the past 2 nights.  This indicates an increase in the amount of CSF in the ventricles in her brain... if there’s too much fluid in there, she’ll need the shunt surgery (the one her cutie friend Sarah Catherine had, that went so well for her, thank you God!!) to help it drain.  Right now Annelise is not big enough for the surgery, but she is gaining weight every day too!  She’s 3.9lbs as of last night💪
We’re still praying that she won’t need the shunt surgery.
I’m still learning how to stay in the balance of telling God what my heart wants, and trusting that nothing is impossible to Him... and at the same time, recognizing that His ways aren’t my ways, and I could never come close to knowing what He knows, so it’s definitely possible that the Lord has plans for Annelise’s medical story... my brain tries to keep me on one side or the other... but if I only expect God to answer my every prayer the way I want it to go... that leaves no room for His wisdom in our story (and with perspective... His wisdom is what I want to choose every time).... if I just let God do what He will with Annelise and don’t talk to Him about it at all... then I miss out on the perspective and relationship that I get after wrestling with my feelings and faith.  I miss out on praying for specific things like who will water our plants on the days that our friends don’t come over to mow the lawn? Answer: My neighbor initiated an offer to help with the garden!  Another prayer was how to get my niece and cousins in to the NICU to meet Annelise... the answer to that was giving us nurses who let the little cousins in on her shift, and a policy change to the visiting requirements allowed our niece Mara in to meet Annelise the following week!
The big one is my prayer for Annelise to be healed so she could avoid the hospitalization and the need for so many lifesaving interventions.  The answer to that overall was a no, and I don’t plan to ever really understand why this is part of her life story.  I don’t know if there’s one “reason” in my mind that could ever equal it being okay or necessary for Annelise to go through this.  I can’t tie up in a neat bow the “why”, or think of any way that would make it easier to see her daily struggles.  But in the midst of living with the answer to the prayer that’s not what I requested... I’ve never felt more loved, or seen, or in the presence of God than I have in this past month, and since we found out about her diagnosis really.  I see Him work daily bringing comfort, little and big victories over medical complications, and while I don’t want this to be our reality, NICU life and breathing troubles... if we didn’t have these struggles, we wouldn’t have access to the joy that comes from being held in the middle of the struggle, and from the victories we experience!
So it’s important to pray and ask the Lord to fix up the cerebrospinal fluid issue so that it drains appropriately without a shunt, and to grow her lungs and airway so that Annelise can take easy breaths, and strengthen her airway and muscle tone.  I know and believe these impossible issues to me are no biggie for how Mighty my God is.  I know that if he chooses a different plan for her story, that He will be present in every page, and He knows all of the chapters, and will be there too!
This is the kind of stuff that floats around in my head throughout the day. I’d love to be able to have a coffee date and talk it over with whoever continued to read this monstrosity of a post this far!  🤪 But for now I just dump my thoughts on here... it’s helpful for me, and I’m sure it will be interesting to look back on whe our life eventually leaves the NICU!  The other plans for today include holding Annelise and resting so she can continue to grow!
Thank you, as always, for continuing to keep Annelise in your prayers❤️

Evening Update: 

Annelise’s first month birthday was full of rest for her, and some holding time with me... something that is becoming much more consistent and I love the cuddles!

The day was not too eventful.  The urology specialists came to say that Annelise’s kidney (she has one big “horseshoe” kidney, where the two kidneys are connected in the shape of ... a horseshoe!) is slightly inflamed... so they will be putting her on antibiotics to try and keep away any UTI’s, as well as follow up with a kidney x-ray sometime soon.  I don’t know too much info about that yet.  I’m sure it will be another learning curve.

She didn’t gain any weight today👎 but her head circumference went up by only 0.1cm👍

The past hour and a half has been eventful... because try as we might, the normal tricks once again just weren’t enough to keep her 02 sats up.  The nurse practitioner was finally called in, and she made an adjustment to the oxygen she’s receiving. After some repositioning and waiting, her numbers came back up.  She’s requiring a lot more oxygen than any other day this week though.  Praying that her breath will come easy soon, and thanking God for the nurses who work so hard to keep her comfy, and also check in on me to see how I’m doing when the night gets stressful. ❤️

On a fun note... I can’t decide which animal to have Annelise take pictures with each month... so we’ll just go with both for now 🥰

July 9th - Another day with the goal of growth

Kevin took the day off from working remotely today in order to be intentionally present, instead of on his laptop at the hospital. This is a big leap of faith day for him, because my bean counter husband (that is meant in the most endearing way possible 😊) is taking an unpaid day off for the first time ever since taking this job after he graduated from college!
He’s trying to stretch out the already generous 12 weeks of paternity leave (thank you, employer!!) by going back to work remotely, because we have no idea how long we’ll be out here in Omaha.  I know if it comes down to it and Kevin had to go back to work in California, we’d survive of course... but I’d rather not be out here without my husband!! Although I know a few other mama’s who are doing just that, because they are making it work in order to get their babies the life saving operations and care they need here, since they are denied the same care in other states due to a diagnosis of having an extra 18th (or 13th) chromosome.  (Cool tangent story real quick: as one of my new friends’ husband was leaving to go back to work and other kids back home... I mentioned to my new friend that I was curious to find out how God would provide for her comfort on the day of her son’s procedure, since her hubby would be gone... and was so happy to read a post on her page that included her excitedly sharing her story of the right people showing up right outside her son’s hospital room at the right time saying just the right thing so that this Mama knew that she was held by the Lord and He will care for her in this place that He has called her to.  Not that I want to live in this intense environment for an extended period of time... but it is super cool to have so many opportunities to just trust God with a need and then see it provided for!)
Back to the update about our day... it was an excellent day of hanging out and cuddling with Annelise 🥰 She continues to sleep a ton and as long as she’s on her tummy, her breathing is ok.  She’s still extubated!! It’s a good day💖

4 weeks old!!

Happy 4 week birthday to Annelise Faith!🎀💖🥳
I went home to the Rainbow House to sleep last night!  That was a big step for me, since it has been so hard for me to put distance between myself and Annelise when Kevin is also not there by her bedside.  Only one parent is allowed to stay overnight at a time, and I can sleep anywhere, so the reclining chair has been my bed since her heart surgery.  I knew it was important for me to get away and have a real sleep... but she kept having new-to-us nurses... and if we’re gone all night, I just want to know that the nurse knows her, especially while she has been having a hard time breathing easily.  So when Annelise had the same amazing nurse 2 nights in a row, she had a great comfy day yesterday that included more than 5 hours out of her isolette, snuggling with Kevin or I... we knew the nurse that would be coming back the next day, and loved her... we left!  I called a couple times to check in, and got the final report today that Annelise had an amaaazing night.  No alarms at all! 🥰🥳😃
The plan continues to be “watch and grow”.  She had another gain of 30grams (about an ounce) at last night’s weight check!
Our visitor train is slowing down now, Kevin is working remotely from the hospital room, and I don’t exactly even know what I do all day... but somehow I am always talking to someone or doing something and still have time to forget a bunch of stuff too!  Time and tasks are weird in the NICU.
Praying that Annelise continues this growth trend, praying that her airway grows bigger and stronger along with her, that her heart rhythms even out, her brain continues to be seizure free, and that her ventricles would find a way to drain CSF without needing a shunt.  Plus any other organ in her body that you want to pray for! 😊
Annelise got an bath (she slept through this one, yay!  Because she hated the last one!)
And got to wear her first outfit! 🥰🥰🥰🥰
I remember wondering when ordering the NICU preemie clothes online, if I would ever get to see her wear them.  We just weren’t sure if she’d survive the birth.  The feeling of joy is overwhelming, seeing her look so adorable in her outfit, on her 4-week-old birthday!🎂