top of page

Relocation


This past week has been a bit of a whirlwind of emotions. It started on Monday with our family surprising us at dinner and showering us with a copious amount of thoughtfulness by reaching out to our extended family and close friends to surprise us with cards, gifts and meaningful mementos to help us out and make us feel more at home in Colorado. It was an emotional evening, where we read through all the cards and marveled at all the gracious keepsakes. We were flooded with an innumerable amount of gratitude and thanks. We truly feel blessed to be surrounded and supported by the BEST tribe of people. This continued throughout the week with loved ones not just reaching out but dropping by to give me one last big squeeze.


Fortunately for me I was able to attend college 10 miles from my parents house and really never had to do the “see ya later” game. It wasn’t until I met Corey and we dated long distance for those first five months that I ever experienced a deep feeling of missing someone (luckily for us that didn’t last long!) I’ve been dreading leaving since the day they told us we would have to relocate for a few months. Thankfully our early diagnosis did give me time to mentally prepare myself. I can’t help but think maybe this was part of God's plan to push me outside of my comfort zone. I’m sure I probably sound like a big wimp, but I’m a homebody at heart and never felt the desire to leave. The week of goodbyes was painful, but also a reminder of all the wonderful people in my life that make leaving so hard.


On Sunday February 19th my sister and I packed up the expedition and started our trek to Denver. Corey stayed home for this week to juggle our big girls schedules and hold down the home front for as long as possible. He will catch a flight this Saturday and Abbie will head back home. Abbie and I made it Sunday evening before the snowstorm hit and were able to settle into a cute, little and quaint AirBnB that will host us for the next eight days before we can move to a larger AirBnB that is much closer proximity to the Children's Hospital. I’m proud to say I’ve kept it together here, I know in my heart this is the best, safest place to be to give our baby girl a chance.


I was able to attend the Ash Wednesday Mass at the beautiful Catholic Cathedral in downtown Denver yesterday. Another wink from God realizing our baby will be born sometime during this season of lent. A time where we often pray more than usual, and pray with emphasis. After mass I asked the priest to bless our baby, in those moments I could feel his presence. It was a brief minute where all the background noise was suddenly gone and all I could feel was peace and a wave of love ripple through my body. As tears trickled down my face they weren’t because I was sad, but because the beauty of our baby being blessed I could feel to the depths of my soul. Jeremiah 1:5

“Before I formed you in the womb I knew you, and before you were born I consecrated you; I appointed you a prophet to the nations.” It brings me great harmony to be reminded that God knows our baby, she will be our miracle and wonderfully made.


-Now onto the Doctor Checkup!


37 Weeks 4 Days Checkup at CHOC


A little update on Tuesday’s doctor's appointment! I was under the impression I was only going to be getting two ultrasounds, meet with the cardiologist and the Maternal Fetal Medicine Doctor (MFM) and was delightfully surprised to learn that I would get the opportunity to meet with our daughter's heart surgeon, Dr. Jaggers. I quickly googled questions to ask your surgeon that I didn't already have written down and prepared my notebook!


When we were first diagnosed a lot of moms asked me, “who is your surgeon going to be? Who are you going to pick?”. Initially we were not even aware this was an option! For me, picking our surgeon became this daunting task, ultimately you're picking your child's only chance of survival and placing your 100% trust in another human to save your baby. I felt overwhelmed as I don’t have a medical background and a lot of what I read sounded so foreign. We didn’t make this decision lightly; through the help of my nurse best friend, reading research, talking with other heart moms, we did our due diligence, prayed and weighed our pros and cons. All factors of age, experience, and essentially heart mom reviews led us to a confident decision. I was also advised to ask nursing staff at the hospital who they would choose for their children? They all replied you couldn’t go wrong with any of them but a few did mention Dr. Jaggers has had the most experience. Though I fully believe all three would do an excellent job I just knew in our heart and gut we felt most at peace with Dr. Jaggers. I preface this by saying this would never be a “knock” or in any way negative review of the other two brilliant doctors we didn’t choose! We came to our decision and then I had the opportunity to meet a little girl named Banks from my hometown who had Dr. Jaggers saved her life on multiple occasions. After meeting sweet baby Banks I officially felt at peace with our decision. I think there is something about seeing the results firsthand that gives you an extra level of comfort. So long story short that’s how we fell into the hands of Dr. Jaggers.


He walked into the room, shook my hand and step by step went over his role in saving HLHS babies and what to expect after. I was so nervous to meet him, I wasn’t sure if the scary reality of his honesty or hearing the worst case scenario would bring me to tears, but it didn’t. It was just refreshing to be able to put a face to the name and look him in the eye and thank him for a miracle job he is about to perform. Heart Surgeons and especially pediatric heart surgeons are put on a pedestal in the medical world and often spoken about like they are “gods” or “royalty” AS THEY SHOULD! There is a very minimal amount of people in the whole world who perform the miracles they perform on a daily basis, to be in their presence is quite frankly an honor. They are extremely busy and always in high demand around the hospital. It was extremely impressive to me that he took the time to meet with me and never once seemed in a hurry to leave the room. He had kind eyes and a calming presence, he was extremely thorough and left me with a sense of confidence, hope and essentially trust I needed to comfortably move forward.


Here is a list of questions I was able to ask him and get answers too.

  • What is the difference between wound vac and non wound vac and will she need one? (one of the other surgeons uses this technique so I was curious to see why he didn’t?)

    • She will stay open chest for two days (no wound vac) and they will closely monitor to make sure there are no infections and swelling. After this he will close her up! However he did make it clear it is very common for babies to develop an infection after surgery but he didn’t feel the vac was necessary to begin with, so ultimately I have to trust that.

  • How long is Recovery post surgery?

    • If all goes accordingly it is predicted she will spend 7-10 in the ICU post surgery, then she will be moved to the CICU (Cardiac Intensive Care Unit) for about 20-30 days after that. He predicted 6-7 weeks post-op to recover before we can consider bringing her home interstage (time between first and second heart surgery.) This is if she runs into minimal complications!

  • How long will surgery last?

    • 5 hours typically

  • Do you feel comfortable letting us return to Montana interstage?

    • As long as her recovery goes well it shouldn’t be an issue. He said they have Pediatric Cardiologists fly up every so often and hopefully Billings will be getting someone full time in the next couple of months.

  • How long will she be on oxygen?

    • Highly likely she will need to be on oxygen until her second surgery at (4-6 months old.)

  • How do you determine when she will need her first surgery after birth?

    • Most standard HLHS babies have surgery at 3-6 days old. Purely based on scheduling and when it works best for the surgical team. It would be rare to have to move the surgery up, he felt confident that her heart was a great HLHS case to put her in that 3-6 day timeframe.

  • Will I be able to breastfeed her right away?

    • This I have learned has been a very controversial question. The surgeon, neonatologist, heart moms, and cardiologist have all given different answers. The surgeon and neonatologist discouraged it only because they believe it will make her liver/kidneys and other organs have to work harder and her heart will already be in a lot of stress just trying to pump. However in my gut I know it’s important for me to be able to try and bond with my baby, I also want her to remember how to eat after surgery. Most hospital stays are extended because teaching your baby how to eat can take a very long time. I was relieved to hear the cardiologist's opinion on the matter. The cardiologist we met with was a female doctor who I have the utmost respect for. She is BRILLIANT… and she encouraged breastfeeding right away! Her green light gives me conviction that it’s going to be ok if we try! 100% of the heart moms I spoke with also were able to try even if it was only for 10 minutes. As mothers I think that bonding is crucial and I think it will also set her up for better success post surgery. I keep hearing the advice, “advocate for yourself and for your baby”!

  • Other Points he made that were very encouraging!

    • In Denver alone the survival rate of the Norwood procedure is 90%, but Dr. Jagger's personal survival rate is 94%. (Norwood is the name of her first heart surgery.)

    • Dr. Jaggers survival rate for babies making it through all three surgeries that our baby will need is 84%.

    • He said if her first surgery goes well then the rest should follow suit.


After meeting with Dr. Jaggers I had an echo-cardio gram where they ultrasound only the baby's heart. Then the cardiologist came in and reviewed the results. Thankfully everything looks the same! She was a little concerned about her Aortic Arch, but said she felt like the ultrasound picture wasn’t great and to absolutely not worry! Then we were shuffled to our final ultrasound room where the tech performed a “Bio-Profile”. They look at four major factors: your baby’s heart heart rate, muscle tone, movement and that she was practicing breathing! Thankfully our baby girl passed with flying colors. Then the Maternal Fetal Medicine doctor came in and reviewed the Bio-profile notes and assured me that everything looked great! They predict she is currently 6lbs 9 oz give or take a pound!

Moving forward the plan is to induce me on March 5th! My mom will be bringing the big sisters down to Denver on March 3rd. I am really praying we can stick to this plan, but will just be thankful when Corey gets here! Thanks if you made it this far, I know I was very detailed in my recount of the past week, but I really want to be able to remember all this someday! Thanks to all who have kept us in your prayers, we appreciate it more than anyone will ever know!

I saw another mom’s blog leave intentional prayer requests at the bottom of her blog and loved it! So here are a few for our baby if you're interested:)

  • We pray she doesn’t develop a blood clot after birth and that no surprises show up on her echo-cardiogram!

  • We pray for her first few days of life she doesn’t suffer in pain and may God wrap his arms around her to make her feel safe.

  • We pray our surgeon and the rest of the medical staff continue to wow us with their brilliance and give our baby girl her chance at life.

  • We pray she can stay inside mom until March 5th and give her all the time to grow and get strong before her big debut earthside!


6 Comments


misswandarae
Mar 08, 2023

Prayers for your baby girl, that she heals with no complications, and on to a healthy life.❤️❤️❤️

Like

kdrice1952
Feb 26, 2023

Hearts and prayers are with all of you!

Like

lisarekdal
Feb 25, 2023

You amaze me of your way of expressing your emotions. You are so loved and have so much support! Love you girl!

Like

ktnooner11
Feb 24, 2023

I love feeling like we are here with you on this scarey journey and in that, you don't feel alone. Reading this has definitely made my prayers for you all much more intentional for I can pray in much more detail. We will also be praying for the safe travels of all of your family that are coming and going to be there for you and baby. We love you and admire your "Want-To"!

Love, Katie


Like

wilcoxk3
Feb 24, 2023

I love reading all your updates and we are following your story. May God wrap your baby in his arms and give you wisdom and peace throughout this journey.🙏♥️🙏


Katie Wilcox

Like
Schultz001.jpg

Hi, thanks for stopping by!

Hey thanks for stopping by! My name is Kayleen, I am fairly new to the heart mom community.  We found out at our 20 week anatomy scan that our baby girl has a severe Congenital Heart Disease called HLHS in October of 2022. 

Let the posts
come to you.

Thanks for submitting!

  • Facebook
  • Instagram
  • Twitter
  • Pinterest
bottom of page