Dear Family and Friends,
As some of you know we’re expecting a baby boy, James Todd II, in early October! Jackson just turned one and has been such a blessing this past year. Jason is an awesome big brother and when we learned Jackson was going to be a big brother, too, we were overwhelmed with joy. I’ve learned this past year that I love every second of motherhood. Sleepless nights, continuous feedings, life-changing everything – bring it on. I love it. I knew I wanted another baby almost immediately (it took 9 months to convince Todd!).
When it came time for our 18 week sonogram my mom said as we walked into Dr. Lo’s office, “Let’s go see that diaphragm.” The same nurse who showed us Jackson’s diaphragm looked around for 30 minutes or so. JT was facing in so it was difficult getting good images. Eventually, she started taking pictures and letting us know what she was seeing. “Head circumference is good, he weighs a whopping 9 ounces, kidney’s are here.” A few more minutes went by and she turned off the monitor and said, “I’m concerned we have another diaphragmatic hernia.”
I burst into tears and thought I was having a horrible nightmare. We had a 1-2% chance of this happening again. It rarely happens and so far isolated CDH cases have not been found to be a genetic or chromosomal abnormality. I now think otherwise and had an amniocentesis last week to find out more chromosomal detail of little JT. (Ava had not other chromosomal abnormalities).
We were able to have a fetal MRI that same day. It was all too familiar. Same imaging center, same waiting room and same procedure as we did with Ava. Dr. Twickler consulted with us after she analyzed the images. She remembered us and Ava. Her expert opinion confirmed a left-sided CDH. JT’s bowels, stomach and partial liver have already herniated into his chest cavity. She saw “minimal to no lung” on the left side. She also saw an eventration of the liver on the right side. There’s not an identifiable hernia (or hole) but the diaphragm seems to be weak and bulging up. We left the appointment hopeless, confused and completely in shock.
Fast forward 2 weeks to today. Our Dallas team of doctors have consulted with a team of doctors from Texas Children’s Hospital in Houston. Texas Children’s has a specialized group of doctors and surgeons that concentrate in fetal care and treatment plans specifically on CDH babies. We met with our Dallas team today and were presented with several options. Houston wants another MRI done at their hospital in 2-4 weeks to evaluate JT”s potential lung growth. If they estimate that JT’s lungs will be developed at a rate of 25% or less we would qualify for their CDH in utero surgery, a tracheal occlusion. They only perform this surgery on the most severe cases. Houston is 1 of 3 hospitals in the US that is FDA approved for this procedure. They’ve performed it 6 times in Houston but the surgeon leading this team has done over 60. Four of those babies went home with mom and dad and the other two are recent births and still in the hospital. I like those odds. The surgery would be performed at 26-28 weeks. A balloon would be placed in JT”s throat in order to block fluid from leaving his lungs. (I breathe for JT now until birth while his lungs grow). The fluid helps expand the lungs at a more rapid rate helping fight for space taken up by the herniated organs. Another surgery will be performed to remove the balloon before birth around 36 weeks. The tracheal occlusion surgery is one option, only if we qualify. (We also have to have normal results from the amnio because this study is only for isolated CDH cases).
With or without the tracheal occlusion surgery we have the option to deliver in Dallas with Team Ava. Depending on Houston’s MRI results we can choose an aggressive treatment plan as we did with Ava or we can choose comfort care. I’m fairly certain we have some of the biggest decisions we’ll ever make in our lives ahead of us. I’m praying for clarity and peace.
We will keep everyone updated on JT’s progess as we embark on a new CDH journey.
Much love,
Jennifer
3 boys and an angel 
Love you so much Jen! Praying for all of you!
Our thoughts and prayers are with you and your family. We love you all very much if you all need anything at all we are here for you.
we love you,
Katharine, Jorge, Mia & Santiago
Love you so much Jen!! I am praying for you and JT and Todd everyday. I’m here if you need anything at anytime!!!
Love you,
Michelle
I am so sorry you are having to walk this road again! Yours is the 3rd family I know with a second CDH’er on the way. We have some great TX CHERUBS Reps I’ll send your way and also our Illinois rep whose wife also is 24 weeks with a 2nd. We are sending our prayers from Oregon for this baby boy!
Shelly Moore
CHERUBS Oregon Co-Rep
Grandma to CDH angel Jayden Gilbert
Praying everyday for baby T, your family and the doctors:-).
We love you!
~Heather
Praying for you guys and Baby Dicker. Stay strong and positive. We love you.
Debbie and I Are prayng everyday for you and feel that this will come
to a joyous birth.
Jennifer…my heart is heavy for you and your family. I will definitely be sending up prayers for you all!
We are praying everyday for healing for JT and for wisdom, comfort, and peace for you and Todd. We pray that God will minister to you through His word and through your family and friends. We love you guys so much and are here for you.
The Lord himself goes before you and will be with you, he will never leave you or forsake you. Do not be afraid; do not be discouraged. (Deuteronomy 31:8)
Jennifer you , your family, and this precious child will be continually in my prayers. My heart aches for you that you must travel this way again, but God has a plan and a purpose for all things, He promises to be with us and carry us through our most difficult days. I have experienced this as I know you have also. My love and prayers will follow you .
God bless, you all are in my heart
Continuing to send prayers your way. I hate the we have to ride this roller coaster even once let alone twice.
Aunt Bec has been keeping me updated. Praying for JT, you and your beautiful family to have strength. Also for the Lord to guide you in your decision making. Lean on him. He will carry you through. Please let me know if I can do anything. We love you. Take care.
I’m so sorry that you are having to walk this seemingly impossible path again. We will be praying for strength and comfort for all of you and that the Lord would give clear direction on the many decisions you have to make. We toured both Children’s in Dallas and Texas Children’s and can’t say enough good things about both places. We ended up delivering in Dallas (Dr. Lo was also our dr.) and several weeks after delivery Texas Children’s called to check on us and sent the kindest note after our daughter passed away. Such very kind people at both hospitals.
God bless you guys!
I’m so sorry that you are having to walk this seemingly impossible path again. We will be praying for strength and comfort for all of you and that the Lord would give clear direction on the many decisions you have to make. We toured both Children’s in Dallas and Texas Children’s and can’t say enough good things about both places. We ended up delivering in Dallas (Dr. Lo was also our dr.) and several weeks after delivery Texas Children’s called to check on us and sent the kindest note after our daughter passed away. Such very kind people at both hospitals.
God bless you guys
Prayers, hugs, and love! And know God surrounds you and your FPC family will be by your side.
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I am sending postive thoughts and love your way! Love, Lee Ann
Jennifer!
Bob and I will be lifting you up in prayer as you continue this journey. You are the strongest person I have ever known!
Much Love!
Bridgette Evans