Day 3 post trach

There's a cute little baby that just turned 7-weeks-old today!! 🥳 The days keep blowing by. We're just two days away from the planned first trach change on Wednesday morning.  After the first trach change, the ENT specialist will let us know if we can start weaning Annelise from the meds that are keeping her sedated now.  Today the medical puzzle included trying to keep Annelise's blood pressure from going too low as a response to the sedation meds. They did eventually figure it out! 
They took her food away again ☹.  She had more output from her chest tube... which means she needs more time to heal before they resume feeds again.  As of now... they are considering this weekend to start her back on  breastmilk instead of just nutrients delivered through an iv.  I'm hoping that since she's sedated, maybe she won't notice how hungry she feels.
Her shunt site is healing nicely!  We got cleared to go from daily visits by the neurosurgery docs to twice a week!
I'm still in a state of being overwhelmed that my baby has so much permanent hardware attached to her.  A shunt that is visible as a lump under her scalp on the  back of her head... and trach tubes coming from her neck.  It's true that technically some kids do get rid of their trach... but that would be so far down the road that it doesn't really affect the feeling I have now about being overwhelmed at all that Annelise's little body has going on.
It's just another piece of this journey where extreme and dramatically different feelings occupy the same space.  While I can see that this medical life is truly overwhelming... there are also so many good good moments that remind me of how God is so fantastic at organizing just what we need when we need it!  Being able to interact with Annelise more, even in her sedated state, has been so amazing!  Here's a picture from this morning when she was quite alert! 💕💖💗

Day 2 with a trach

Day 2 - post trach placement was super relaxed.  The ENT surgeon came by to check out Annelise’s progress early in the morning, and was happy with how she looked.  The nurses found a good dosage of pain medication to give Annelise so she will remain calm and still. I feel like the Lord sent us a gift in the form of a new level of sedation for Annelise.  I was expecting her to be sleeping and out of if for the 5 days that she’s recovering before her first trach change.  This morning, when I got back to the room from rounds, I walked in to see Annelise looking at me with her big eyes! 👀 It was so awesome seeing her looking all around.  She didn’t try to stretch out and turn her head... so I didn’t have to run and get a nurse to come and sedate her more... I was able to hang out with her and talk to her, before she closed her eyes again and drifted off to sleep.  It was such a special moment of connection for me.💖
Kevin got to see her big eyes later in the evening.  She had them open again, and we also enjoyed some new baby experiences like watching her open her mouth and suck on a swab of breastmilk (because she can now... no tube taking up most of her face and mouth!!)  Right now, she is super peaceful and content.  She started on feeds again, so her little belly is full now. It is such a welcome sight to see her sweet face and look into her eyes.  I could tell you more, but my eyes are closing and sleep is waiting!
Thank you, as always, for holding Annelise in prayer!  Goodnight!

July 28 - Day 1 with the trach

Day 1 post-trach is almost complete.  Miss Annelise has places to go and people to see apparently... because she’s doing an awful lot of moving for a little baby who is supposed to be completely still!  We need her to stay still in order to not mess with the tracheostomy site, so it can heal correctly!
It has been nerve-racking to be in the puzzle-solving phase of trying to find the best mix of drugs that will sedate her but not over sedate her.  When she wakes up, she doesn’t seem to be in pain, thank you Lord that we didn’t see her bothered today!  But she stretches and wants to look around when her eyes are open... and that’s really not safe for her to do at this point. The nurses seem to have found a good balance of meds they can give her, and are attentive to the signals that her body gives that indicate she could use more meds.
I wish it could be next week now!
We didn’t get our favorite nurse today, but we got our other favorite 😆. I truly feel so lucky to know these nurses who are so passionate about their jobs, who save my baby and my sanity quite often.  I will miss them when we’re gone!
We’ve started to let ourselves think and imagine more about what life will be like at home with Annelise.  I try not to get too ahead of myself.  We still have the shunt to heal from, the chest tube to get rid of/ Chylothorax to get over, trach to heal from, and g-button to be placed in her abdomen for feeding... then once that’s all done... we’ll find out more about her need for the ventilator, and start talking about leaving Omaha!
That’s still a lot to get through... praying that all infection stays away so that Annelise can fly through recovery.  Praying for comfort for her surgery sites, chest tube, and for her empty tummy right now too.  They will likely begin feeding her my skimmed breastmilk on Monday.  I’m praying that goes as planned and they can take the chest tube out soon.
I’m thankful for the peace about getting the trach that Kevin and I have been given.  I’m definitely not going to think that I can speak to what it’s like to be a “trach mom” at all yet.  But I know that we’ll get through the learning curve as time goes on, and I’ll breathe easier myself as I get better at practicing giving every part of Annelise’s being to the Lord, meaning I’m going to give Him her eyes, and the anxiety around any vision problems that she might have... moving to her brain... any seizure issues that will pop up in the future.. mouth... giving away the stress of the future decisions regarding her cleft lip...I’m giving charge of that to God, and recognizing that she is His first, and mine next.  It’s like the Matt Hammitt song “I Couldn’t Love You More”... that goes:
“You are mine for a moment
But you are His
Forever His
And in this life
I am holding You
But in His arms you live“

Today was a good day😊.  We got to see a little smile on Annelise’s face while she was sleeping, and it’s just so fun to look at her cuteness!  We’re in love 🥰

Her beautiful face!

I’m so amazed by this baby girl.
She is tiny but mighty, and going to get much bigger and stronger too!
It felt like meeting her again for the first time when we first saw her sweet face!😍

July 26 - Trach Surgery Day

2pm: The update for now is that surgery is delayed until 6pm Nebraska time (4 for the Californians).  The surgeon is in a surgery at a different hospital right now. Praying for his energy level so he can be amazing for a few more hours today!
The waiting is making our heads hurt.  We have mentally gotten ready to send her off to surgery too many times today!

6pm update:

They just took her back to the operating room!  The procedure should take about an hour and a half.  We’ll keep you updated!  We prayed with her multiple times since we thought she was going back multiple times!  Add that to the prayers from you who love her too, and she is covered!🥰❤️🥰❤️ Here are the last photos of Annelise Faith with a breathing tube!

6:55pm update: She’s out and has a trach!  We haven’t seen her yet... they are getting her set up back in the NICU.  I’ve requested that we take my nervous energy to Starbucks... so we’ll drive thru and hopefully she’ll be ready for us when we get back!🥰  Thank the Lord again and so often that we’re here in Omaha💖 The surgeon said the procedure was a “piece of cake”... and he was happy with how it turned out.  He’ll be the one who is on call this weekend, so he’ll be checking up on her.  I can’t wait to see this baby, although she’s recovering from more than I’ve ever had to... so I’m expecting to have to wait for her bright eyes to make contact with mine again.🥰🤩

July 25th - Just another rainy summer day in Omaha.... plus tons of changes!

I feel like this baby girl is cute all the time, but the way she looks changes all the time based on what else is taped to her face.  One perk of the trach is that we’ll get to see her whole face!  The little hat that she came back from shunt surgery with made her head look more rounded, so I was claiming that she was starting to look more like me... but now that it’s off... she’s still Kevin’s mini-me😆.  That’s ok with me!  I’m kinda partial to that face anyway 🥰
The re-taping of her breathing tube went well!🎉🤩
The not so great news of the morning is that her pleural effusion has gotten worse, not better... so they will be inserting a chest tube to drain it.  We continue to pray against any infection in her body, and ask the Lord for the outcome that once that extra fluid is gone... that it stays away. The chest tube will probably happen after 1pm Nebraska time (11am CA time) today.
I’ll let you know how it goes!

Update 2pm:

The chest tube went in successfully!  I used the time that I couldn’t be in her room to finally set up the GoFundMe page for the people that have reached out to us to ask how they can send us financial help!  We’re so grateful to be supported in so many ways by you, our extended community!❤️❤️❤️

GoFundMe link

Evening Update:

I’ve been sitting on this info for awhile today, letting it bounce around in my brain... thinking about how once I update everyone... that will mean it’s really happening!  But it’s happening you guys!  Annelise is getting her tracheostomy surgery TOMORROW!!  The ENT surgeon came to find us today to say that the tracheostomy that he had scheduled for a different patient got postponed, so he has an opening and thinks Annelise is a good candidate for trach surgery tomorrow afternoon at 2:30! (12:30 in California!). We originally wanted the trach surgery to be done with the g-button surgery to get two surgeries done with just one time under anesthesia... but due to her shunt surgery being so new, the neurosurgeon wants to wait some weeks before anything else is done to her abdomen, because that’s where the shunt is draining.  We decided to go ahead with the trach surgery tomorrow anyway, because it gets rid of the breathing tube and the risk of becoming accidentally extubated!  I really don’t want the trach for her.  My prayer and fear the whole time I was pregnant was that it would come to this, and I wouldn’t be able to handle it.  Well it has come to this... my fears have come true, except I recognize that I’m different now than I was even just a few months ago, how can anyone not be different after all this?  My perspective shifted somewhere between the good days with cuddles and rest, and the millionth prayer through tears when things changed on a dime. I can see that I can handle it, we can both handle what’s in front of us, because God has already gone before us, He knows what’s coming, and He will be there to carry us when we need it, challenge us when we need it, and we will have a deeper faith and see God do greater things because of it.

This next week will be rough.  We won’t be able to move her after the surgery, so she might have to be paralyzed to keep herself safe.  Thats just one more thing that we don’t want to go through, but it is the way to get to our baby breathing well, so we just will.

She’s also recovering from the chest tube draining fluid that turned out to be too fatty, meaning that after surgery, her body isn’t processing fat correctly.  They will skim my breastmilk to give to her for awhile, and hopefully that clears up quickly!  For a minute, that issue (called Chylothorax for our medically inclined... or Google inclined friends) was the big issue of the day... but it quickly got overshadowed by the trach surgery planning. Multiple specialists are okay with her having this chest tube going in to surgery, so onward we go!

The bonus is that we’ll see her whole face.  😍😍😍 Praying and trusting that this timing is God’s plan, and praying for a flawless procedure, good rest and a nice, energizing lunch for our surgeon, a comfy, well-placed trach for our baby... and nooooo infection!

That’s all that happened today!😳

The photo below is Annelise after a long rest induced by the pain meds that helped her through the chest tube procedure.  She came back “bright-eyed and bushy tailed” according to her beloved night nurse.

What day is it? Wednesday, July 24th

When we got to the hospital this morning, Annelise had been sleeping peacefully, and continued to do so all morning.  We tried a holding time, but she wasn’t resting comfortably, so it was cut short, and we’ll try again later.
Tomorrow there’s a bath scheduled, a retaping of her breathing tube will happen as well, and that’s where her history of unplanned extubation started... during a tape change event... so I generally don’t like them at all.  There’s always a risk when moving a breathing tube.
Since she didn’t do well extubated last time... we won’t try to extubate again.  I don’t want to go back to the place where she has to be on her stomach with her face smooshed into a pillow in order to get enough oxygen in her body!  We decided we’re definitely going with the tracheostomy.  The next step will be to get the surgery on the calendar.  We’ll most likely do a g-tube surgery at the same time, since feeding would be the other big issue to tackle after the breathing issue.
I’m not really excited about getting a trach for Annelise, but I am excited about her being able to catch her breath with a secure airway.
 We know from others’ experiences with tracheostomy’s that the care of the trach will eventually become second nature.  We also know that whatever happens, whether she needs a ventilator attached to her trach sometimes or all the time... God has been with us through more than we ever thought we could handle already... and we know He promised to never leave us... so we can be certain He’ll continue to provide peace, wisdom, mercies, and blessings like He has been already, as we adjust to being a family with a trach!
Lung issues have surfaced for Annelise in the past couple days.  She has that fluid around the  outside of her left lung still, called pleural effusion.  They are watching it with x-rays, and won’t intervene to drain the fluid until it is clinically necessary, which they explained looks like her needing more oxygen and not holding the oxygen saturations easily.  So far she is on a low amount of oxygen, but she doesn’t sound the best in her lungs when the doctors listen to her.  Praying that the fluid gets absorbed by her body, and that the cloudiness that always bothered her lungs the last time she was intubated will go away again.
She gained a tiny bit of weight again!  We joined the 5 lb. club today!!  And she has graduated to newborn size diapers!! So long preemie diapers, this big kid is moving on up!🥳😊🥰❤️
Kevin and I are ready as we can be for the next steps.  We miss home, and getting the trach will be a giant step toward getting Annelise ready to go back home.  There’s a chance she’ll be flown back on a medical flight in order to be transferred to Miller Children’s Hospital in Long Beach.  We don’t know exactly how getting home will look at this point.  But I’ll keep you all posted!  And you’ll be praying with us through the process I am sure!  That’s one of tomorrow’s burdens that I don’t need to borrow for today!
The fun note that I’ll leave this update on, is to show you a picture of the little “ears” that the neurosurgeon took the time to add to Annelise’s little hat that covers her shunt wound dressing!  The nurse’s came up with adding a bow, so now we have our own sweet Minnie Mouse to go along with our Mickey lovey that was gifted to Annelise by some of our best friends😍. Picture perfect.

7/23 - Thank the Lord for a day of rest and healing

Today Annelise rested for most of the day, and had her eyes open and looking all around when she wasn’t sleeping.  We will talk about trying to hold her again tomorrow.  Here’s a picture of Annelise enjoying her daddy reading to her. 🥰 We’re such lucky girls to have him to love!  
I’m feeling much more relaxed than I have in awhile.  The alarms aren’t going off all day long, her numbers look good, and although she is intubated, she looks peaceful.  It was a long road that took us here to this point where I look at my baby with tape on and a tube in her face... and am thankful.  I’m thankful for every breath she takes, whether it’s on her own, or initiated by a machine.
She’s been created on purpose, for a purpose!  Just like all of us!🥰❤️ Goodnight!

7/22 Evening Update

Shunt surgery is done, and went well according to the neurosurgeon! Praising the Lord for lending His peace in anxious moments.  My worst-case-scenario tendencies were definitely overshadowed this afternoon by the confidence I have that God’s hand is all over Annelise’s life, and that He brought us to this place to have surgeries just like this so she can heal and be cared for by professionals who see her value and worth.  They are getting her settled back in the NICU now, and her nurse will call us when we can go back to see her. When we see her, she’ll be intubated, with that dang breathing tube back in.  Our prayer is that she wouldn’t fight the breathing tube, that it wouldn’t irritate her, and that she won’t gag on the thing.  We hope without having to spend so much energy breathing, since the tube is doing all the work of breathing for her now, she’ll continue to grow and get even more rolls and chub and strength!
We spoke with the doctor about the results of the scope before her shunt surgery.  She has a floppy epiglottis, and a very small jaw.  The ENT specialist said that there are surgeries available to fix the multiple issues one at a time, but there is no way of knowing for sure if the procedures will lead to a clear and functional airway.  If she gets the jaw surgery, for example... there's still the issue of the floppy epiglottis.  He said the tracheostomy isn't a magical easy option, but of the options that are available for Annelise, he would recommend the trach.  They will try to wean her down to not needing a ventilator, and he didn't promise anything, but said that he believes she does have a good chance of only needing the trach, without having to have the vent attached all the time.  We like the idea of her being able to breathe and grow now... and when she's much bigger, perhaps she will get the muscle tone in the throat that will help her... or something else will change for the better as her anatomy grows.  Or at any other time we could revisit the jaw surgery option if we find a surgeon who has had success with it.  We’ll continue to ask for prayer for wisdom, as this is the first time we’ve had options for a surgery.  All the other issues were very straightforward that she needed the specific procedure to save her life.
I can’t wait to go see our brave and tiny but mighty 6-week-old!💕🤩💖🥰
The big specific prayer request is Lord, please heal this baby girl and keep away any infection.  Zero, none, nope, don’t want any.

7/22 - Shunt Surgery Underway

Annelise just went back for her scope with ENT, and will have the shunt surgery after that.  She had a good night last night, other than being disturbed to get her ready for her big day today.  The nurse last night was able to get her IV in on the first try! Today, they had to add another IV, but weren’t able to get it in two tries, so they decided to do it in the OR.
This is what we came for.  This surgery gets her closer to being able to breathe, even if it’s with assistance... and helps her drain cerebrospinal fluid properly so her brain won’t get too full and get damaged.
Thank you for your prayers!  We definitely feel the Lord with us in this moment of waiting.

Update: Shunt surgery is done, and went well according to the neurosurgeon! Praising the Lord for lending His peace in anxious moments.  My worst-case-scenario tendencies were definitely overshadowed this afternoon by the confidence I have that God’s hand is all over Annelise’s life, and that He brought us to this place to have surgeries just like this so she can heal and be cared for by professionals who see her value and worth.  They are getting her settled back in the NICU now, and her nurse will call us when we can go back to see her. When we see her, she’ll be intubated, with that dang breathing tube back in.  Our prayer is that she wouldn’t fight the breathing tube, that it wouldn’t irritate her, and that she won’t gag on the thing.  We hope without having to spend so much energy breathing, since the tube is doing all the work of breathing for her now, she’ll continue to grow and get even more rolls and chub and strength!
We spoke with the doctor about the results of the scope before her shunt surgery.  She has a floppy epiglottis, and a very small jaw.  The ENT specialist said that there are surgeries available to fix the multiple issues one at a time, but there is no way of knowing for sure if the procedures will lead to a clear and functional airway.  If she gets the jaw surgery, for example... there's still the issue of the floppy epiglottis.  He said the tracheostomy isn't a magical easy option, but of the options that are available for Annelise, he would recommend the trach.  They will try to wean her down to not needing a ventilator, and he didn't promise anything, but said that he believes she does have a good chance of only needing the trach, without having to have the vent attached all the time.  We like the idea of her being able to breathe and grow now... and when she's much bigger, perhaps she will get the muscle tone in the throat that will help her... or something else will change for the better as her anatomy grows.  Or at any other time we could revisit the jaw surgery option if we find a surgeon who has had success with it.  We’ll continue to ask for prayer for wisdom, as this is the first time we’ve had options for a surgery.  All the other issues were very straightforward that she needed the specific procedure to save her life.
I can’t wait to go see our brave and tiny but mighty 6-week-old!💕🤩💖🥰
The big specific prayer request is Lord, please heal this baby girl and keep away any infection.  Zero, none, nope, don’t want any.

7/21- last day with the nasal cannula

It’s the last night before shunt surgery! This weekend has been extremely full.  Full of anxiety about Annelise’s breathing, sadness that we can’t just go home and live a life without hospitals, comfort from visits with family, joy from time spent hanging out with Annelise, encouragement from friends new and old, and a whole lot of prayer.
We’re as ready as we can be for tomorrow’s surgery.  The neurosurgeon has come to visit with us and talk about the surgery multiple times.... Kevin and I visited with the sweet  baby Sarah Catherine and her wonderful parents today to see how her shunt looks.  Sarah Catherine looks amazing!  She’s doing so well🥰 The girls’ shunts will be very visible as a bump under the skin on their skulls for awhile... but as they grow, the shunts will become less noticeable.
We feel that we’re right where God wants us right now.  This is an absolutely necessary surgery, and so we’ll walk into tomorrow giving every minute over to the Lord... one minute at a time if that’s all I can handle at that moment.  But ultimately, we trust that God has His hand on our family, today, tomorrow, and all the days always.
Annelise had a great and restful day.  She gained weight again!  So now she’s 4 lbs 13oz and 17.12 inches long!
Tonight she will get an IV placed for surgery tomorrow.  She’s historically a “hard poke”, so the night could be long if they can’t get an IV in quickly and have to poke Annelise multiple times.  I stayed at the hospital again to be with her tonight and sleep in the recliner in her room. Praying that her nurse will be able to get the IV in on the first try!
Tomorrow she will go to the OR and be scoped by the ENT specialist before she has her shunt surgery.  I’m impressed with the communication between different departments here.  Happy they worked together to combine procedures for Annelise!
The shunt surgery shouldn’t last too long.
The biggest risk after the surgery is over is any infection, or the shunt failing.
Praying for NO infections and a successful surgery!  Also praying that the ENT specialist will make wise choices regarding the scope and direction that he chooses to take Annelise’s case regarding her breathing in the future. I’m also lifting up to the Lord a request for peace and calmness for Annelise while she has that breathing tube.  I am looking forward to seeing her able to lay on her back again and not struggle for air.
We were able to have a nice visit with Annelise’s Uncle Eric and Aunt Melanie 💕this morning before they drove back to their home in Minnesota.  In the afternoon, Grandma and Grandpa Buchanan 💕came over and we put together some photos of Annelise to share with other family at the reunion they are going to next month.  We said goodbye to our last visitors this evening, then got to help give Annelise a bath to start prep for the big day tomorrow.
I’ll make up for not having photos of the babe yesterday by being able to share some of her professional photos!  What a special gift we were given, and I’m so excited to share them with you!🤩

7/20 - Expecting New Mercies Today

Funny how little things can make a difference.  Like this morning, I was trying to start the day with as much joy as possible... and as I’m leaving Starbucks, the barista tells me “have a nice day Janet” (shoutout to cousin Janet Carmody ! Think of you always when this happens... so that’s a LOT! 😊) Suddenly this crazy new out of comfort zone life had a little bit of “normal” to it, and that which usually makes me roll my eyes (why would my parents use all those extra letters in my name if my name was supposed to be pronounced like Janet? Come on people!), gave me some comfort of home.
They increased some ventilator settings for Annelise last night when they did a blood gas test and her CO2 levels were much higher than is safe for her.  The follow up blood gas test was so much better... but I’m not sure it will be enough to keep them from deciding to intubate her today... there’s a new neonatologist on duty this weekend... so I don’t know what he’ll decide.  I don’t think we even know what we’re hoping will happen at this point.  It’s so hard to see her hating the breathing tube down her throat, but when she gets upset on her current settings and struggles to get a good breath... that can smash a person’s heart too.
While driving to the hospital from Starbucks this morning... the electronic billboard outside of Target reads “discover God’s plan”.... we’re trying, billboard!  We’re expecting His mercies to be evident today, we’re trusting He will orchestrate the best plan for Annelise, and we’re so beyond grateful for the gift of today with this little loviebug!💕🌷💖
She’s sleeping comfortably right now, we’re waiting to find out what her team has to say at rounds today, and we’re expecting a big day of visiting!  Because Annelise’s mom can’t remember what’s happening when... so she tells Annelise’s Buchanan grandparents to come visit on the same weekend that she has made plans with Annelise’s aunt Melanie and uncle Eric!  We’re also thankful for flexible family that goes with the flow and loves her so much to make the long trip❤️🥰

Friday, July 19th

Today was another day for ALL of the feelings.  We had some amazing moments!  Like the 2 hour cuddle time I got with Annelise today to make up for the interrupted one we had yesterday.  She was breathing so easily with her cpap cannula today, even when we had to move her around to give her a bath!  Our friends blessed our socks off with a photo shoot by a photographer who is also a nurse... perfect for this setting! ... who came bearing gifts of Starbucks!  Thank you friends! We had the best time, it went way more smoothly than I was anticipating.  Thank you Lord for a good breathing day!❤️. The night, however, has not been so great for breathing.  Kevin and I were just about to go to the Rainbow house when Annelise started retracting and working really hard to breathe.  Her o2 levels wouldn’t stay up, and the Respiratory Therapist was talking about intubating her if it didn’t get better.  I tried holding her like I did this afternoon when her breathing was calm, but that only seemed to help for about 5 minutes... we sat and prayed together, then when it looked like she wasn’t getting any better, and her numbers dropped lower, the nurse put her back in bed, and Annelise calmed and her numbers went way up!  She found the sweet spot!  Hooray!  Her breathing calmed, and everyone tiptoed away to not wake the baby!
In between all the respiratory issues and photo shoot fun, we got some special visitors!  Kevin’s parents joined us and met their granddaughter for the first time!
It was a really full day.  Can’t wait to get back to our little love tomorrow!💖😁💖🌷💖💕

Thursday the 18th

Lots to process today.  We’re still scheduled for a VP shunt surgery on Monday at noon (10am California time).  At rounds this morning they were questioning whether to reintubate Annelise earlier than Monday when she will need to be intubated with the breathing tube anyway for the surgery.  They decided to leave her be for the weekend... but we were told that she could be reintubated at any time if it becomes necessary.  They were talking this way because she has had more and more problems with breathing, and basically she only likes the faceplant now, and will have long episodes of not being able to keep the oxygen saturation in her blood at acceptable levels whenever she is shifted to not be straight on her belly.  It’s worth it to keep trying to reposition her, because it’s not good for anyone to stay in one position too long, but it risks stressing her out.  Today she was able to have a nice cuddle with me for awhile, then her feeding tube slipped, got pulled on, which made her spit up, and it was the end of the cuddle party at that point.  Took awhile to get my heart rate back to normal after that!  Makes me sad because very soon it is going to be so much more difficult to hold her with the breathing tube in.  I was hoping for a long time holding her today, but it didn’t turn out that way.
When she was weighed tonight.... she was promoted to 2 kilograms!  (4lbs, 6oz) This means that the ENT specialists will get involved now and determine the next steps as far as her breathing.... since it’s getting more difficult for her to breathe and not easier... nobody will say it’s definitely going to happen, but people are making sure we are prepared for her to need a tracheostomy.  I’ve been sitting here for so long trying to figure out what to write about how I feel about a tracheostomy... and I just don’t have the words yet.  I don’t want her to get one, even 1%.... that’s a true statement.... but also, if tracheostomies weren’t a possible medical intervention, I’d be writing about how I’m praying for someone to invent a way for babies with airways like Annelise’s to have some procedure done where they just get the air that they need... that’s also true!  I’m already mourning the loss of our ability to get up and go anywhere, because of equipment that we might need.  But then the next minute I’m remembering the time not long ago when I didn’t know if I would know Annelise at all... and here she is 5 1/2 weeks old... and if we bring some breathing accessories home with us with a trach... that could be the start of our lives at home with a growing daughter!  That’s the answer to my prayers right there!
So I’ll continue to pray for wisdom, and we’ll continue to know that we are loved and seen by God, and He made Annelise, and knows what’s going to happen, the same that was true when we first heard the news about Trisomy 18.
This post deserves some fluff and good stuff too!  Check out the cutest unicorn stuffed animal that was given to us by a fellow heart mom whose daughter Ellie was here a few months ago having her heart repaired by Dr. Hammel also.  Ellie’s mom sewed a zipper on the unicorn with a heart inside, and we are so lucky to have such a sweet handmade keepsake.  So thoughtful and adorable!

7/17 - Evening Update

Hello from Omaha, where it’s hot and humid even after the sun sets 😓
I’m back at the Rainbow House tonight too... working on catching up on sleep.  Miss Annelise had a rough morning, but her nurse helped her out and they changed some vent settings for her cpap nasal cannula, so she was breathing okay and had a 4 hour nap mid-afternoon!  We had some time to hang out with each other in the big blue chair again today, and she was cute and awake for awhile after her nap.  She didn’t cry very much, which makes it a better day for us too! Kevin read to her after dinner, and when she was weighed, she gained some weight to put her at 4.3lbs!  She’s so close to 2kg, which is when the ENT team will deem her big enough for them to get involved and do something about her airway.  A tracheostomy is a possibility, but we don’t have all of the info yet, and we have one surgery on the books officially already... so we’ll focus on that one shunt surgery this Monday first.

We are happy and beyond grateful that our baby friend Sarah Catherine is doing well after her open heart surgery and being weaned from her vent already today!!🥳🎉 I’ll put a link to her mama’s blog in the comments for a way to check out her story❤️. The dream is for them both to get chubby and healthy and have a photo shoot together someday😍😍.

Goodnight friends!❤️

July 17th

We’re back at it sitting with Annelise in the hospital.  Waiting for rounds to happen.  Every day sometime between 9:30-11:30 we go to a conference room with the nurse, neonatologist, nurse practitioner, and sometimes other specialists like the nutritionist and respiratory therapist, to talk about Annelise’s case.  Every baby on the 4th floor NICU has a spot in rounds, and we’re usually either one of the first, or one of the last people to go, depending on which end of the NICU they start with.  Today they started with the other end... so we’re still waiting for them to get to us.  

Yesterday, before rounds happened, the neurosurgeon that performed Annelise’s repair of the Spina bifida opening (myelomeningocele for those of you that like technical terms) came to talk to Kevin and I about the results of her head ultrasound.  They can see that the ventricles in her brain are growing slowly in size, so since that means she’ll need a shunt at some point... they want to schedule it now when she is relatively healthy with no infections like a UTI... because if she got an infection, that would postpone the surgery, and they wouldn’t want the situation to turn into an emergency situation.  As I’m typing this, the neurosurgeon came by again and said she’s penciled in for shunt surgery on Monday at noon!

Kevin and I were talking about how there’s so much we don’t know about what she needs medically.  So what do we ask for specifically in prayer?  We know God answers prayer always... so our answer could be a yes, a no, or a wait. I forget about the “wait” option sometimes.  I remember not being entirely happy and patient about the waiting for someone to share my life with before I met Kevin... if I had known who I was waiting for all those years, it would have been much easier to wait!  I had no idea where my choices and circumstances were going to lead me, but God knew!  The feeling is similar now because we don’t know what to expect with Annelise’s story... but God does! I keep thinking that this shunt surgery could be one of those blessings in disguise.  The idea of something so large that it can be seen as a lump under her skin on her head is really undesirable to me... but what if it makes her feel more comfortable, and what if being intubated again for awhile helps her to grow?  If it’s something that will be good... and it IS so good that modern medicine exists so this fix is even an option for her... and it IS so good that we’re here in Omaha where the specialists see her as the valuable person that she is, and don’t hesitate to perform the same surgeries on her that they would give to any typical child with a closed myelomeningocele.... then if I’m spending so much time praying that she doesn’t need the shunt, I’m using all this energy to ask that something good not take place for her!  

So specifically, but a little bit generally, since I have such a limited perspective on her medical needs, and the Lord knows everything, we’re praying for God to intervene in a way that will lead to health for Annelise’s brain, lungs, and keep any infection away, and for wisdom for her medical team and Kevin and I to determine what the next steps will be for her.  I want to bring my requests to the Lord, for no surgery, but I also want to live in a place where I trust God first, and keep talking to Him, and letting Him do the carrying of our hearts, instead of trying to use my mental and emotional energy to carry us through.  I have limited emotional and mental capacity for the intense measure of this situation!  That has become apparent!  Sleep and time with my hubby definitely helped me last night, and having a cuddle with my little one while listening to worship music helped end yesterday on a good note.  I’ll leave you with the two songs that really helped repair the leak in my soul yesterday.  The “breath back” YouTube video is one that speaks so closely to where we’re at and where I want to be, and I wouldn’t know about it if not for another mama friend that I met here!

Another reason Omaha is so amazing, is the people we are connecting with who are walking a similar walk with their babies too.

It really helps to have a growing community around us that stretches from home to Omaha, and wherever our people are all over the states and even abroad! 🥰💖🥰

Breath Back YouTube video

A hymn I found and really like!

Here’s the update from Sarah Catherine’s mama:

“Sarah Catherine is enjoying her new room and old friends here in the PICU today. She had a few heart rate fluctuations overnight and we stuck by her like glue. No code events so far this time. The morning x-rays show her lungs to be a little cloudy, but expected post heart surgery. Her cardiac surgeon came in this morning and continues to be pleased. He wants her off the vent ASAP. We sit and wait for her to dictate next steps. They are weaning her support slowly working toward extubation as soon as is safe. They also continue to wean off sedation, but again, they are following her lead. We have seen God work in miraculous ways this week. Please keep her covered in prayer.”

5 weeks old!

Morning:
Happy 5 weeks old little girl!🎉🥳🥰 She’s a snug little bug this morning😊. Nurse Hannah says she can face plant later, but she needs to try out some different positions first.  It’s nice to see her face😍
We had a pretty good night!  All her tests were taken this morning.  The blood gas results were within acceptable range🎉👍 Now we’re waiting to find out more about her head ultrasound.
Just to introduce you to the area that has been our home for the past 5 weeks, here’s a panoramic photo of the skywalk between Children’s hospital (on the left) and Methodist Hospital (where the NICU for Children’s is located), with a lovely view of Omaha. We walk over from the NICU to Children’s daily to go to the cafeteria or coffee shop.
Kevin is working from the hospital room today (I don’t know how he does it without getting distracted every 5 seconds like me, but he does it! 🧠👍🥰) Love to you all from the three of us!💕💖💕

Evening Update:

I’m writing today’s update early to ask for prayer for a heart sister baby friend, Sarah Catherine, and her family.  She has gone back tonight for her second heart surgery.  They are an amazing family, with three other super cool big sisters who brighten everyone’s day, and we’re praying with them that this surgery would lead to complete healing of Sarah Catherine’s little yet powerful heart❤️❤️❤️!
Annelise had day of sleeping and crying today.  Because of her paralyzed vocal cord, she slightly squeaks, and you can occasionally hear a baby whimper from her.
She had some good test results.... the one that measured her cortisol levels determined that her body can make its own cortisol. 👍 There is a different nurse taking the head circumference measurement tonight, but it looks like it went down! 🥳 We’re still waiting to connect with the neurosurgeon about the results of her head ultrasound.  She ALSO had a surprise echocardiogram today... hoping that’s just routine... looking forward to getting those results too.
Our girl gained 2oz today!  We’re still exhausted!  But Kevin is taking another day off tomorrow 🥰
I hope you all had a great day!