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!