The Cooper Family

Scroll down to see updates as the Cooper family progresses in their CDH Journey! (All updates are written and given by parents with consent)

We found out I was pregnant with baby #2 the day after Easter. At 12 weeks we found out our baby was boy, our second boy! Fast forward to our 20 week anatomy scan and I just had a weird feeling that morning. After our ultrasound, we sat in the exam room waiting to meet with my OB, and a strange thought popped in my head. I thought about a childhood friend whose baby was born with hydrocephalus and how they went to Texas for treatment and he’s doing well now. My doctor walked in moments later and had a worried look on her face. We received the diagnosis of Left CDH and that she would be referring me to MFM to confirm and we would most likely need to go to Texas for treatment. My husband and I left our appointment and decided we needed to name our baby boy. We agreed on Gabriel, after the angel that appeared to Mary, informing her she was pregnant with the Son of God. It also means God’s strength. After confirmation from my MFM, we were referred to Children’s Memorial Hermann in Houston and I went for my first appointment at 24 weeks. We were told our Gabriel’s case was very severe, he had a Grade D defect, and most of his organs up, including a portion of his liver. His O/E was 26% and only 8.22 mL of total lung volume. We discussed the details of FETO, and I decided I wanted to pursue this. At 28 weeks, I went in for my FETO surgery, and after almost 4 long hours, my surgeons had to call it quits. They were unable to place the balloon due to severe swelling in the trachea. After the surgery, they discussed the possibility of Gabriel having tracheomalacia. We were discharged two days later and cleared to go back to Louisiana, and about an hour outside of Houston we got a call from our doctor telling us to turn around and he wanted another MRI. After reviewing surgical footage, he felt there was a possibility the balloon could have been placed. Our hopes were lifted that it could have worked. The next day I got my MRI, and after hours of sitting in the hospital halls, we got the call to go to my doctors office. It was not in place. Gabriel either spit it up, or it wasn’t placed at all, and it was floating in the amniotic fluid. Again, our hopes were crushed. We went back to Louisiana, and I sat on modified bed rest until I made it to 34 weeks for us to move to Houston. December 12 finally came and I made it to my 38 week induction date. Gabriel came into the world, like the angel that he was named after. His delivery was just about as special as it gets. My husband and I prayed before I started pushing and a beautiful curated playlist of inspirational songs we’re playing in the background. He arrived after about 15 minutes of pushing and they said he was the most lively CDH baby entering the world, ready to fight! He went on ECMO shortly after, about an hour later after some very scary CO2 levels. With steady improvement, he was able to come off ECMO after 10 days. Every day, his respiratory progress improves and he’s becoming less and less critical. With the help of this grant from A Hand to Always Hold will help us with the costs incurred from having to relocate to Houston, while my husband and toddler remain in Baton Rouge. We still have a mortgage, daycare, and all the other bills coming in. My husband is in law enforcement, so a large part of his paycheck comes from overtime and extra details. For the first 3 weeks of our son’s life, my husband was by his side and not working. We are lucky to have great parents who are able to keep our toddler, but to keep his life stable, we chose to keep him in daycare. My husband went back to Baton Rouge after the new year to return to work, and sadly is unable to see our baby now. The money from this grant will help take some of the pressure off my husband to work so much so he can take some time to visit us in Houston and see Gabriel. We are so appreciative to organization like this and to the people that donate to it. 

Update 2/1

After about 2+ weeks of severe reflux issues and 5 unsuccessful attempts at placing a ND feeding tube, our doctors have finally arrived at a different plan. They did a contrast study and ultrasounds and decided on a GJ tube finally and a Nissen. We will finally see some relief in Gabriel’s reflux and last Friday he was able to start back on my breast milk (stopped prior due to a Chylothorax). He will have surgery Wednesday, 2/1 for his GJ tube and the Nissen. He also made a big improvement on self ventilation. They were able to switch his vent mode from AC to SIMV, and he is meeting the ventilator with double the breaths! He’s also maintaining acceptable blood gasses while doing this. Just a week ago I was feeling discouraged and uphappy with how things were going because he was not progressing and other factors were seemingly getting worse. Yesterday, we have truly turned a corner. It’s the wildest roller coaster ride, and we knew it wouldn’t all be steps forward constantly. It’s just crazy to see how quickly things can turn back around when it starts looking rough. I know we have one strong baby boy!

Friday he started intensely throwing up every hour. They stopped his feeds and started him back on TPN and IV fluids and put him on ampicillin and gentamicin pre-cautiously. They did a urinalysis, urine culture, blood culture and CBC. His urinalysis came back positive for a UTI and urine culture grew klebsiella (a hospital acquired bacteria) that luckily is very sensitive to gentamicin. Tomorrow will be day 5 on antibiotics and we’re still awaiting the final word from Dr Harting if he can have his G tube and Nissen surgery. He also had to have a peripheral IV started in his scalp because they could not access a line for his PIC - which they are attempting right now with ultrasound.

Update 2/21

Gabriel is doing great right now! On Valentine’s Day he was extubated from the vent and placed on CPAP. In just a week he has been weaned down to a pressure support of 5 and his FiO2 is ranging from 24-21%, all while high satting. He’s gaining weight finally and is in the 9 lb territory! We were able to transition him from skimmed breast milk to full fat breast milk now that his chylothorax has looked to be healed. He has a big boy crib now and loves playing with all his new toys! He’s also found his voice now that he’s no longer intubated, and we love hearing his cries and coo’s. We’re so excited to see the positive direction that he is headed after his first month and a half of life as a lot of ups and downs.

Update 2/22

This morning, Gabriel’s CPAP support was so low that they were able to transition him to high-flow oxygen! He’s doing great and we can really start to see the light at the end of the tunnel! 

Update 3/15

We have a new, really big update. Gabriel was discharged after 89 days in the NICU on Saturday, and we are finally back home in Louisiana! He met his big brother yesterday, who is totally obsessed! We’re so happy to be together again, our family under one roof!