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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!

The Tyrrell Family
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