
The Tyrrell Family
Baby June
Scroll down to see updates as the Tyrrell family progresses in their CDH Journey! (All updates are written and given by parents with consent)
Update 5/8/24
At our 20 week anatomy scan we learned that our baby girl, June, has a congenital diaphragmatic
hernia (CDH). Her diaphragm has a hole in it causing her stomach and intestines to push up into her
chest cavity which is pushing her heart into the right side of her chest. The doctors recommended
we do an amniocentesis right away to check whether or not this condition is associated with any
generic anomalies. We were immediately referred to UW Health in Madison for further consultation.
CDH affects approximately 1 in 2,500-5,000 babies world-wide and can range in severity. At this
point, we know that June's case is severe, and has a survival rate of 10-40%.
Our world was turned upside-down over night, but our faith has remained strong. We know that
June is a child of God made perfectly in his image, and we will do everything we can to bring our
baby girl home. Our family and our church have surrounded us with love and prayers and we are so
very thankful and grateful for every prayer and petition for our family!
February 1, 2024:
A few days ago, Joe shared this devotion with me:
Pray for Miracles: James 1: 6-8 "But when you ask, you must believe and not doubt, because the
one who doubts is like a wave of the sea, blown and tossed by the wind. 7 That person should not
expect to receive anything from the Lord. 8
Such a person is double-minded and unstable in all
they do."
"In Joshua 10, Joshua was losing the battle. He prayed a big prayer-for the sun to stand still in
the sky. God answered him, and the battle was won. We need to stop being intimidated to pray
for miracles. It's up to the Lord to grant them-it's up to us to ask. God doesn't need our prayers
in order to provide, but He often invites us into the process. Answered prayers buid our faith.
Pray big!"
This has changed my whole outlook on how I have been praying for June. I am unapologetically
asking that God allows her to grow the biggest, strongest, lungs the doctors have ever seen. My
prayers are bold and I KNOW that God will deliver!
A few days after boldly praying this prayer, we learned that Johns Hopkins University has an
entire hospital dedicated to CHD babies and their families. My amazing and strong husband
spent time on the phone with doctors from this hospital who explained their approach and how
90% of the babies they treat go home because this is ALL they do. Both Joe and I felt this huge
burst of hope and joy at the prospect, and we absolutely KNOW that God opened this door for
us!
Now, we just need to unapologetically pray that miraculously they accept our health insurance.
Please join us in bold unapologetic prayers for strong lungs, and accepted health insurance, and
believe them! All Glory, Laud, and Honor to God!
February 2, 2024:
Praise God, we heard back from the CDH Hospital through Johns Hopkins and our insurance
will cover the majority of all medical expenses that we might incur.
We are over the moon elated as Hopkins was our first choice of care facilities!
We will find out more next week, but it looks like we will be heading to Tampa sometime within
the next 4 weeks for our initial testing and consultation.
All of the prayers have been working! Thank you for every single one of them! Please pray for
strong lungs for June, and safe travels for all of us.
Praise God from whom all blessings flow!
February 5, 2024:
June bug is 22 weeks old today and she loves to remind her momma that she is there with little
love kicks! She is a very active little lady!
Today I spoke with the nurse at Hopkins who is thankfully going to help us schedule all of our
testing and consults in St. Petersburg during the week of my spring break, March 4-8. We will
have three tests down there (Fetal Echocardiogram, Targeted anatomical ultrasound, and an
MRI) followed by a consultation with the Doctor and Surgeon who will be in charge of our case.
We were also informed that if Hopkins is our final care facility, we will be moving down there at
the end of April which puts me at 34 weeks. Thankfully we are able to stay at the Ronald
McDonald House when we move down there in April. Normally babies with this condition
deliver early, so it is important that we live near the hospital when the time comes.
Yesterday in Church, Pastor Mark talked about how important our Christian Community is in
order to fight the battles that come our way. Thank you for being our tribe and our prayer
warriors! We would not be able to fight this battle without you!
”And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a
little while, will himself restore you and make you strong, firm and steadfast. To him be the
power for ever and ever. Amen.“. (1 Peter 5:10-11 NIV)
February 17, 2024:
Joe and I have decided to continue to consult with both UW-Madison and John Hopkins All
Children’s Hospital for care. John’s Hopkins will be Plan A, and Madison will be our Plan B in
the event baby June makes her appearance earlier than anticipated.
We are heading down to Madison on Monday for an MRI, growth scan, and fetal echo. These
tests will tell us how baby June is growing, how strong her heart is, and how massively big her
lungs have grown (the miracle we are all praying for!).
We will have all of these tests repeated in St. Pete’s the first week in March when we head down
there for our initial visit and consult at with their surgeons.
To God be the glory forever and ever! Amen!
February 20, 2024:
Wow, just wow!!!
Praise God from whom all blessings flow!
This afternoon we met with our surgeon team at UW-Madison to review our tests and MRI from
yesterday. June’s lungs are developing well enough that she has been moved to the
mild/moderate category!!!!!! This is truly the miracle that we have all been praying for! PRAISE
GOD!!!
At this point Madison is giving us a 100% survival rate and we most likely will not be needing as
many procedures after birth like we initially thought. This is a huge game changer as we will
most likely be able to receive all of our care in Wisconsin!
The surgeons admitted to us that this is not the direction they expected June’s case to go. Thank
you for joining us in bold prayer...God delivered!
Joe and I still have not completely processed this amazing news and what it means going
forward. We are still a bit in shock. What we do know is that we are truly blessed and God has
gifted us a miracle! Please join us in praising Him!
From the bottom of our hearts, thank you for every single prayer! God Bless You All!
March 8, 2024:
Joe and I just finished our week in Florida and received our second opinion on baby June. We
were absolutely blown away with the CDH hospital through Johns Hopkins All Children’s
Hospital! Dr. Kays is the top surgeon in the world for CDH and that is all he does everyday all
day. The team surrounding him is also amazing and they have thought through every single
detail of the process from start to finish.
Dr. Kays explained to us that most surgeons specialize in organs (cardiology, pulmonologist,
etc.), however the entire team under Dr. Kays specializes in the disease. So, we work with CDH
cardiologists and pulmonologists, etc.
After testing and consultation, Dr. Kays confirmed our baby June has moderate CDH with a very
low ECMO risk which is outstanding! She is on the better half of the CDH spectrum. The dr.
anticipates that she most likely will not need to go home on oxygen nor a feeding tube. He
believes we are looking at a 5-7 week NICU stay which is on the lower end for CDH babies!!
We also learned that June is just shy of 2 pounds and everything else about her looks fantastic!
The CDH cardiologist said her heart looks outstanding and he does not anticipate needing any
postnatal surgery!
The greatest part about our whole adventure has been the welcoming smiles we got from every
single doctor, nurse, administrative assistant, and cafeteria chef, and the positive outlook on the
whole process! Our baby is completely normal at JHACH (children’s hospital) and every single
doctor and nurse treated us and June as the precious miracle that she is! They are ready and able
to provide her the absolute best care and the best life outlook.
We have been connected with case managers who arrange and coordinate everything for us from
start to finish because 80% of CDH families come from out of state to receive care. We also
received a tour of the Ronald McDonald house where we will be staying, and it is nothing short
of amazing. The majority of families at the house are also CDH families and will be a great
support network for us. During our tour we even met another family from WI!
Joe and I have decided that the CDH unit at JHACH is where we belong. We know that no
matter how our birth story unfolds, that June will be in the absolute best hands! An analogy
another parent shared with us is that June is our Ferrari and we wouldn’t want just any mechanic
working on our Ferrari, we would want the mechanics that specialize in our precious girl!
It’s not going to be easy nor convenient, but this is what is best for June and that is the only
factor in our decision.
We feel so incredibly blessed at the outpouring of support on our Florida journey. I’m crying
happy tears while writing this because of how God has guided us through this whole process! We
sing praises to his name for opening doors and providing what our baby needs.
Please continue to pray for our journey, for our family, and our health as we navigate a cross-
country relocation. And of course please continue to pray for our precious girl!
“Do not be anxious about anything, but in every situation, through prayer and petition, with
thanksgiving, present your requests to God. And the peace of God, which transcends all
understanding, will guard your hearts and minds in Christ Jesus.” (Philippians 4:6-7)
March 24, 2024
Today was a special day in the Tyrrell house as June’s older brother Jacob celebrated his 4th
birthday! He is growing into such a fine young man and we love him dearly. He tells us often
how excited he is to meet his baby sister! He gives my belly lots of kisses and sings for Junie
bear! I praise God daily for our beautiful family of four!
Joe and I are officially moving down to St. Petersburg, Florida on May 3, so we have been busy
preparing for the temporary relocation. It is looking like I will be induced around Memorial Day
however that date is fluid and depends upon lots of factors. We will keep you all posted on when
June will make her grand entry into the world! Jacob will be staying with his grandparents during
the month of May so he can continue his school routine. Once June is born he will join us in
Florida. It will be incredibly tough for me to be away from my little man for so long, so I
appreciate your prayers for strength for this momma!
As we approach Holy Week and Easter Sunday we are so eternally grateful to have Jesus to walk
alongside us on the journey. This morning’s message at church was all about facing the
hardships in life, and how Jesus left us a blueprint in his journey to the cross during Passion
Week. Even as he approached the cross, he used his pain, hurt, and fear to teach others about the
Love of God the Father and he kept his focus firmly on God.
It is my hope that God uses June and our journey to show the world how his love can move
mountains and grant a peace that passes all understanding. Our June bug has already made a
huge impact for God’s Kingdom, and that is the most beautiful part of our whole journey.
We thank you for your continued prayers for June’s lungs, her growth and development, and our
family’s relocation!
May 4, 2024:
Praise God, we made it to St. Petes and we are comfortably settling into our new digs and
routine!! (One of my secret fears was going into labor on the plane...thank you Jesus that did not
happen!) It wasn't until last night in our Uber ride to the Ronald McDonald House that both Joe
and I realized the magnitude of what we are doing. We have been running on pure adrenaline
over the past few weeks, and it is finally sinking in that we are here for the long haul.
Saying goodbye to Jacob yesterday was tough, but he is having SO much fun with his
grandparents and aunties and uncles right now that it brings us great peace! Thank you to all of
our family who is graciously taking care of Jacob right now!! We know the sacrifices you are
making for us!
We were able to secure a room at the Ronald McDonald House East. The whole facility is so
wonderful and every accommodation has been thought of. We are very comfortable! Joe's dad,
Jerry, is graciously driving a car down for us as we speak so that we can get around. Thank you
Jerry!
We have already met some very nice people who are also here waiting for the birth of their
child(ren). We are all in similar situations, so it is comfortable to have each other as a support
network.
We know that June weighs above 5 pounds which is so wonderful! We want her to grow big and
strong to help her manage her surgeries after birth. My first doctor's appointment with the doctor
down here is Tuesday and we will see how much she has grown over the past week.
We can rest easy now that we are here. There was always a small chance that we wouldn't make
it to St. Petes if June decided to come early, but we no longer have to worry about that. We know
we are at the best place in the country for her birth and that brings us much comfort! Come what
may, God has us in the palm of his hand.
We appreciate every text, call, message, and well-wish over the past few days! You are all
wonderful!
May 7, 2024
Today I met with my MFM doctor down here who could be one of the doctors delivering June.
June passed all of her tests with flying colors and she is at 5lbs. 6oz. She managed to swim her
way into a breech position again, but this girl is a mover so I’m hopeful she will swim her way
right back.
They took another measurement of her lung and the doctors said, “look at that nice chunk of lung
she’s got there! She will do well!” This is what we want to continue to hear! Praise God!!
I also learned that normal amniotic fluid level right now during pregnancy is 25cm....I’m at 40!
This explains why I feel like an overfilled balloon and look like I’m carrying twins...apparently
this is also very normal for CDH pregnancies.
My MFM doctor reassured us that we are in the best place in the world for CDH. He told us that
if a baby isn’t doing well, Dr. Kays will roll out his army cot and sleep by their crib side to
ensure he is doing everything he possibly can.....this is why we are here my friends....
We are enjoying getting to know many people at the RMH, and all that St. Pete’s has to offer
while we are here. Many of the moms here are unable to have their spouses with them on a
regular basis, so Joe has done a wonderful job of helping us all! He is also enjoying finding small
home improvement projects around the “house” as a way to give back. The hardest part for both
of us right now is not having Jacob with us, but he is very happy, so we are hanging on. I could
use some prayers for strength in this area!
Update 5/24/24
We are extremely excited to share that June Ruth Tyrrell was born on May 21, 2024 at 8:53pm at JHACH!! She is 6lbs. 2oz. and beautiful!
June is now very comfortably resting in her own room in the CDH wing on the 8th floor of JHACH. I like to call it command central, because there are more machines monitoring her than what it takes for a NASA rocket launch! June has a very highly trained nurse with her in the room 24-7 who specializes in CDH. June will never be left alone for even a second. There is also a whole care team at June's disposal. It is amazing to watch the team in action. Decisions are always made in a team setting to ensure that everyone is doing what is best for baby.
Parents are encouraged and welcome to be a part of the whole process, and are welcome to access her room at anytime of day. There is a refreshment station and area set up for parents in the CDH wing so that we can ensure we are taking care of ourselves as well. There is not much we can do right now, since her nurses and the care team are just ensuring she is comfortable and stable. They are also taking some time to learn about her and what her little quirks and needs are.
So far, she is handling everything very well. We learned today that they were able to lower the ventilators a but because her oxygenation was doing really well. We were told she did have a moment of agitation where she flailed her arms and legs a little bit, so they gave her a dose of relaxation meds to calm her down. Her vitals went right back to normal and she was once again content. The nurses call these little moments, "spicy." They said these can be normal since babies are hooked up to so many tubes and wires.
At this point, they like to keep the babies as still and as peaceful as possible to prevent any surges in vital signs, so we can talk to her and briefly touch her, but that is about it. We feel helpless, but the nurses have assured us that this is very normal, and that it is best for us to rest and recover so that we can be strong for June. In a few short weeks, we will be able to be more involved with the process when she is more stable and her repair surgery has been completed. We will just need to learn the new normal and develop our own routine.
I've attached some pictures of our warrior princess! Thank you for your support of our family on this journey!
Update 6/22/24
Baby June is doing amazing! She was taken off of ECMO, extubated, and began feeding all within the last 2-3 weeks! We are finally able to hold her, and her brother Jacob just adores her! June is now over a month old and we are hopeful the be discharged sometime in July!! We are so blessed and excited to share this with you!
Update 7/24/24
We are super excited to share that we were discharged from the hospital a few days ago!! June continues to work on eating and gaining weight. We are staying in St. Pete’s until Aug. 2nd to have our final consult with our surgeon, but then we are heading for home! Thank you so very much for blessing our family with these funds. I am excited that you are now able to bless another family!
