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CDH: Three letters that changed our lives, part 2

Body

In the following hours and days, the NICU team continually adjusted Jordan’s support to find the perfect levels she needed to be steady enough for her surgery. It was a long scary three days, but she showed us she had a lot of fight. The decision was made to have her hernia correction surgery on day 3 of life. It was the longest four hours of our lives.

Finally, Dr. Olutoye came out from the surgery and told us, “It couldn’t have gone better.” Jordan did fantastic, and when he moved the liver down they found there was a lot more lung tissue on the right side than they originally thought. When the lungs finally had room to inflate and expand, Jordan immediately started doing better. We still had a long road to recovery in the NICU as Jordan’s lungs needed time to grow. We tearfully hugged him and thanked him for changing, and hopefully saving, our daughter’s life that day.

He humbly replied, “Don’t thank me, thank God. I just work for Him.” Those words have stuck with us. What an incredibly humbling moment to hear this world-renowned surgeon not wanting to take any credit for what he just did.The 64 days Jordan spent in the NICU were challenging, but she continued to surprise everyone. Throughout that time, Jordan was weaned off of all her sedation and pain medications; she weaned from the oscillator to the conventional ventilator, then to C-PAP, then to low-flow oxygen. She endured an infection and a failed extubation. She went from a synthetic liquid diet to breast milk mixed with formula for extra calories. So – Much - Progress.

Finally, on the last day of March, Jordan was discharged on an oxygen machine, a reflux med and a feeding tube. We stayed in our apartment for a few days to get our bearings, as it was the first time caring for Jordan on our own. We then set out on the 20-hour drive back home to Michigan. It took 3 exhausting days to get home, but overall Jordan did well considering she had never even seen the light of day until three days beforehand. Pulling in the driveway on a gray April day with our baby was finally the homecoming we had hoped for since early October, six months earlier. Our home stood as we’d left it, but our hearts returned changed forever. We had our girl. We know Jordan has a unique story. She is a miracle from God. Jordan’s story is only beginning; she continues to surprise her doctors and us with her growth, strength, and development.

She is now 9 months old and has met or exceeded age-appropriate milestones. We attend feeding therapy weekly and just had a G-tube placed in September. Back in June, Jordan’s oxygen was discontinued and she has been breathing on her own ever since. She crawls, pulls-up, cruises, laughs and has a signature “roar.” We are now tied to communities we had no personal link to before: CDH, MFM, fetal surgery, NICU and infant loss. We are very blessed and lucky. We have met and witnessed families who experience the ultimate Earth-shattering news that their baby would not return home with them. I can’t think of a bigger personal tragedy.

The faculty at Texas Children’s Pavilion for Women are first class. From the MFM receptionist, nurses, PAs, fellows and surgeons, to the NICU nurses, respiratory therapists, volunteers, Milk Bank staff and neonatologists. We can’t say enough about each of these people. The support we received from family, friends, employers and people we’ve never even met has been overwhelming. We don’t know how we would have done it without them. Thank you all. Our wish is that this post can spread hope and in some small way pay it forward. Praise God.

Read part 1 here

Post by:

Kirsten, mother of patient