June 30th - Cough it up!

The morning Omaha update for the last day of June is that she is doing well on the cpap for the most part... but she has phlegm and junk that runs down her throat and blocks her airway!  She made the alarms go off over and over last night, and had to be suctioned by a little sucker that reminds me of the tool at the dentist office that sucks out your spit.  It seems to be worse after she gets her “cares” done... the nurse checks her out and we take her temp and change her diaper... because she’s on her back for this time.  We’re going to try and change her diaper next time while she’s on her side.  Sorry to talk so extensively about throat secretions... but this is our life now!
We’re praising the Lord for her life!  And asking Him to please take away the extra junk in her throat, or give her super skills to just cough or swallow so her airway doesn’t get stuck.❤️
So excited to see some cousins today!  And still getting used to having so many different feelings all at the same time.  All of the feelings!😴

Evening update:
We’re still dealing with sneaky spit over here that messes with Annelise’s breathing.  Today we’ve gotten a lot of practice giving our fears to God faster in response to the alarms dinging about low oxygen saturation.  Any time now, they are going to draw a blood gas, to check her CO2 levels, since she’s had so many episodes of low o2 saturation today.  Praying that her c02 is within acceptable limits... and overall, praying about loogies!  Asking that they would just go away and leave the sweet baby alone so she can breathe easy!
It has been a tiring day.  We used up a lot of emotional energy on all the alarms.  I’m so grateful for the NICU nurses who take great care of Annelise, and have great communication regarding the best ways to keep her comfortable and breathing the best.  Currently, little miss is sleeping soundly... the nurse and nurse practitioner MacGyvered a tiny chin strap for her head so she would have a little help keeping her mouth closed, because she was losing a lot of pressure from the cpap out of her mouth.  It looks like tiny head gear for a retainer to me!
The celebrations of today are for another overall good day with our amazing tiny fighter!💖
We also got to hang out with family who came to town to visit us😁!
I spent some time crafting a colorful name tag for Annelise’s doorway to her room😊

This week coming up, Kevin is looking into working remotely from the Rainbow House, so that he can save up some paternity leave hours.  Hopefully that all works out nicely!  Although I will miss him at the hospital all day, able to do awesome things any time like reading a story to his daughter 🥰.

June 29 - Rest and Recovery Continues!

We had late rounds because a new little baby friend came to the NICU and it took awhile to get them admitted... but it was worth the wait! We got some good news!
Here are the celebrations for today:
💞Annelise’s platelet count has jumped up to awesome levels (they had been low since before her heart surgery)
💞 Her CO2 levels are within an acceptable range, and she gets to keep her cpap nasal cannula!  No talk of reintubating her today!!
💞She is calm and happily sleeping well
💞Her lung x-ray looked clear today!
💞She’s up to “full feeds” of fortified breast milk to give her some extra calories, and she’s tolerating it well,  & gained 11 grams yesterday

That’s on top of the constant celebration that she is even here with us!😍🥰❤️

I made it through the roller coaster loop of possibly having to reintubate right after we got Annelise free from her breathing tube... and waiting through the hard night of what we think was “baby roid rage” as her body was processing the steroids she received to help her with the extubation.
It makes my heart so happy to have people in my life who point me to scripture, encourage, and pray for me, and also let me be sad, sometimes even reminding me that it’s okay to be sad about all that Annelise is going through. I like to be happy and comfortable as much as anyone else, so it has been a learning and growing experience to make room for this intense season of life.
I remember years ago, when I first heard the song “Oceans” by Hillsong... this verse of the song became my prayer... and it has definitely been answered with a yes. God has definitely taken me deeper than my feet would ever have wandered on my own.  I’m already looking at a deeper and stronger faith because of it.  I love how my little girl is changing all of my life for the better 💖

June 28 - Day of Rest - still extubated

June 28

Evening update:
Annelise slept through the whole day!  Not sure if this means she’ll be wide awake at some point in the middle of the night, but regardless, we are so thankful for her time of restful, recharging sleep!  She would stir a bit when she got her diaper changed, and then go right back to snoozing away.  Kevin stayed with her today at the hospital while I went to the Rainbow House for not one, but two naps!  I’m staying overnight again tonight with Annelise, because I just feel better knowing that one of us is next to her.❤️
We got to watch some fireworks tonight from the window of a vacant NICU room.  The finale was bigger than Disney fireworks!
Today I’m grateful for rest, and as always, the many people who are surrounding us with encouragement, prayer, generosity of all kinds, and just their presence or letting us know they are thinking of us.  It has all helped to hold our hearts together, and we’re thankful for our people.💖💖💖
Tomorrow morning they will check Annelise’s blood gas again.  We’re praying that her CO2 levels would be where they are supposed to be, and that her lungs can breathe deep breaths on their own.  Also praying for God’s will to be done, and for Him to ultimately get the glory for her sweet life!



Afternoon update:
Thank you so much everyone! They gave her the all clear for today at least!  They’ll check her again tomorrow.  She’s resting now after her long night.  Praise the Lord!🥰
***********************************************

Morning Update:
We just came from rounds with the doctors in the NICU where they talked about their concerns for Annelise’s breathing.
Her blood gas came back with a high carbon dioxide level early this morning.  They checked it again later, and she had dipped back down to an acceptable level.  Basically, she has one more chance to have a “good gas” level.  They will draw her blood to check it at noon, and if it’s an ok level, she can stay extubated... but if it’s high again, they’ll want to put the breathing tube back in!
She’s resting comfortably right now, so we’re hopeful that she will have good readings, but just having that breathing tube looming over our heads is uncomfortable for me.
If she were to go back on the breathing tube, it would be so that she can grow before either trying to extubate again, or getting a tracheostomy.  She’s too little for a tracheostomy now, so the options are breathing tube or cpap nasal cannula.  It looks like she’s doing fine.  I don’t want her little body to be poisoned with CO2, and I also don’t want her to have to go through being reintubated!!
I’m exhausted from not sleeping, and stressed out at the idea of putting the tube back in... so I’m going to ask God to take this burden from me.  It’s usually my job to give my problems to Him, but it’s too heavy and I’m too tired, however I know they belong with Him and not with me.  Asking for prayer from anyone who sees this now please!

Extubation Day!

Quick update!
The extubation went well!  We were prepared for her heart rate to go down, but it didn’t!  Her oxygen saturation levels look good on the monitor... next step is to see what’s going on with her inside.  They will test her blood to check the oxygen and carbon dioxide levels there, before deciding to change any settings, or to determine if it isn’t working for her.  Praise the Lord that we can trust Him with our salvation, as well as our today.😍💖💖💖🥰
We’re at her bedside just staring at her face now😍

New update!  She seems to be tolerating her nasal cannula pretty well.  She has had a couple moments where her heart rate dropped significantly, but it came up on its own again.  They are thinking of giving her caffeine to help with that if it keeps happening, but they want to watch her for now to see if she gets it figured out by herself.

The blood gas test came back with good results.  They are going to check the O2 and CO2 again in the morning, unless she looks distressed at some point today.  I’m going to Starbucks to get our nurse a celebratory nitro cold brew, her favorite... and I’m going to get myself the first iced coffee I’ve had in many months, since caffeine is now possibly good for my baby by some miracle😉

Kevin is giving her some good cuddle time, and I just love their faces!  God is so good all the time, and I’m so especially grateful for these moments!😍G

The nighttime update from Omaha on extubation day:

Annelise had a good afternoon, had a nice relaxing time cuddling with Dad.  Was getting agitated when it was Mom’s turn to hold her, and for awhile in the evening, was crying silently and really difficult to comfort.  We haven’t heard her cry yet, but there’s no reason right now to think that we won’t as her trachea heals from the irritation of the breathing tube.

She was getting tired from all the crying, but was having a hard time settling to sleep.  Our nurse, one of my favorites, stayed with her and tried so many things to see if she could get her to settle down.  I then changed from being teary eyed because of the stress of seeing Annelise uncomfortable, to being teary also because it’s so nice to see the nurses love on her like that and really work to make her as comfy as they can.  Not to mention that I really haven’t had time to process how it feels to see this incredible babe’s whole face without a breathing tube, and to not have to be constantly vigilant to not disrupt the tube. I’ve had ALL of the feelings today.  

😬😳😍🤩🥳🥰😥😍🥺😫☺️😃😍😭😴☹️

It has been a stressful evening, with Annelise feeling sad, and her oxygen saturation levels and heart rate dipping low enough to set the alarms on her monitors off over and over again. They decided to go ahead and give her a dose of caffeine, to try and keep her respiration rate up, so her oxygen levels can stay up too. The night nurse also got her a dose of Tylenol, which seemed to help settle her down a bit.  The alarms are still going off all the time though, and while I’m super confident in the nursing staff’s response times and skills to keep her safe... I’m also concerned about what the doctors will say tomorrow... and if they’ll think extubation is working for Annelise, or if they’ll call this a failed attempt, and put her back on the ventilator with the breathing tube.  I’m sure there would be other things to try first before just giving up... but we’re praying that her oxygen and carbon dioxide blood gas levels still look good tomorrow, even after all of this craziness tonight. Also just praying for little miss to be comforted and get some good rest, with lots of deep breaths, and for the obnoxious junk in her lungs to just go away.

Those are all of the things concerning us tonight... but we also need to take a minute to recognize what an amazing day today has been too!  To see her precious face without all that tape all over it, to be able to pick her up ourselves without 3 other people helping because of all of the potentially life threatening hazards surrounding her breathing tube, seeing the success she was having for a long while this afternoon!  All make for an amazing day overall. 

Tomorrow we extubate! (6/27)

Hi family and friends!! BIG NEWS!! The plan is to take out Annelise’s breathing tube tomorrow morning at 8am, Nebraska time, that’s 6am In CA. They will have oxygen in a nasal cannula ready for her as a step down from the ventilator.  There are different settings that they can use, depending on the needs she has at the time... and they will have another tube on hand to re-intubate if necessary.
This is one of the major questions we’ve had for as long as we’ve been researching trisomy 18.  Will she be able to breathe on her own?  Will she need oxygen constantly? Will she need another surgery to get a trach on a ventilator?  It seems unreal that we’ll actually begin to find the answers to that question tomorrow!  She is doing well, and showing signs that she might succeed off of the breathing tube, but often, kiddos with trisomy 18 have “floppy airways” and to keep them growing, and not having to use all their energy just to breathe, sometimes a tracheostomy is the best choice for the kid.  So it’s a very real possibility that tomorrow evening Annelise could be intubated again.  It’s just as possible though, that she will fly through the procedure, take her own breaths, and never look back on those first few weeks of life where she breathed via a machine.  We don’t know what God has planned for her, but I know the Lord is familiar with my prayers asking Him to grow her lungs, give her airway strength, and fill her little body with breath tomorrow.  I also know that His plan for her is better than my plans for her might be, and that even though it seems impossible, God actually loves her more than I love her!  And I love her so much!!😍😍😍
There is an amazing woman named Beverly, who gives massages to parents in the NICU.  Perfect timing for us today as the nerves are starting to ramp up in anticipation of tomorrow morning!
We can rest in knowing the Lord made her on purpose, for a purpose, and He already knows what will happen.  There’s no other Annelise Faith Buchanan on this Earth, and we feel so lucky to be her parents and walk through days like tomorrow with her, surrounded by faith in the God of miracles, who will be there with us always.💖💕

Tuesday, June 25th

from Facebook:
We are moving in the right direction!  The update for today is that the doctors changed Annelise’s ventilator settings a lot this morning, so if she does well with these new settings, then that will get us much closer to talking about extubation, and getting that breathing tube outta there!  It will be a planned extubation, unlike when it accidentally became dislodged the other night and caused so many scary problems... so the hope is that since everyone will be prepared... if she does end up needing the breathing tube, hopefully it won’t be as dramatic to reintubate if needed.  I want to be prepared for multiple scenarios, and I know having a tracheostomy is fairly common among babies who have Trisomy 18, so it’s a possible outcome.  A trach would not be the end of the world.  It would mean breath for her lungs, which lends itself very well to life with us!  While we’re on this side of things though, our heart’s desire and constant prayer is for her to safely be extubated, and to be able to breathe without the breathing tube, or much, if any, assistance!
We’re also continuing to pray for her little brain ventricles to stay little, and for the hydrocephalus to stay away, and for seizures to stay away!  These requests of course come after the shouts of praise from our grateful hearts for all of the amazing ways Annelise is being healed already!  We’re ecstatic watching her start to stretch and yawn, learning that she likes to sleep on her left side best, watching her tuck her little hands under her chin while she sleeps peacefully, and seeing her bright eyes open while she’s awake.
It will be my turn to hold her later today!💖💕

Monday, June 24th in the NICU

From Facebook:
Happy 2-week birthday baby girl!  Every day is a gift we treasure with you!💖Today the plan is more rest and recovery.  Annelise is taking the plan seriously, so all the two week pics that I have taken today have her eyes closed, sleeping the day away.👍
She got more stuff removed today!  The pacer wires, that were left over from her heart surgery, just in case she needed a jump start as her heart was healing, were removed this morning, because she doesn’t need them!
We love Omaha!  As evidenced by the new coffee mug I got from the hospital coffee shop to add to my collection😊.

Pics of the PICU

These are just some pics of the PICU and the waiting area from our stay there right after heart surgery.

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!