July Sweet Pea Spotlight
Nadia
I looked at the 18 week old baby on the ultrasound in disbelief. After 4 years of studying ultrasounds, I knew what I was seeing. The tears came and would not stop. Her intestines were in her chest cavity; the heart, dislocated; the left lung obstructed; the stomach above her diaphragm: my baby had a congenital diaphragmatic hernia.
It was like getting struck with lightning, twice...my first baby had also had CDH. The condition has a 50% survival rate with no known cause, and he had survived and was now 3 1/2. My second child had been born healthy and was coming into his own at a year and a half. Now I looked at my little girl's image on the screen and thought....can I beat the odds twice?
My son had been out of the NICU in 3 weeks and only had a scar to show for his trials. What did fate have in store for my daughter?
Nadia Marilyn was born at 39 weeks by scheduled c-section in the NICU of Denver Children's Hospital--an exception they make only for the most dire patients. She was immediately intubated as she could not breathe. She would not be able to nurse at this time, nor could we hold her. Within 12 hours of her birth she was slipping away; her heart was struggling to work properly with the pressure of the outside world. We had her baptized in the middle of the night and she went on a heart-lung bypass machine called ECMO. It required surgery to place her on it and tubes from her neck carried her blood into the machine that cleaned and oxygenated her blood and put it back in. To see my tiny infant amid all that machinery that was keeping her alive was both frightening and surreal.
She made it through that night, and the next. One day at a time I watched her progress, and I prayed.
As the weeks went by, Nadia had surgery to remove her from the ECMO machine, a surgery to repair her hernia in her diaphragm and put her organs back to their proper locations, and one more surgery to repair an issue with the pyloric valve in her stomach. By four weeks of age, she had had four surgeries.
Finally she was starting to eat via a feeding tube--I had pumped gallons of milk for her and up until this point, she had been on a nutritional supplement that was broken down to the cellular level. Basically she had not eaten for weeks but her body got the nutrition it needed. She was off the oscillating vent and on a conventional vent. Then she was off the conventional vent and on oxygen and nitric oxide.
After 16 days of waiting, I got to hold her in my arms. And she smiled up at me. And my heart melted.
More days passed, and she still had her feeding tube and oxygen but no more nitric oxide. She was progressing very well.
As the seven week mark approached, I was told she could soon come home.
No more nights spent on a cot in her hospital room.
No more splitting my time between my boys and my daughter.
Soon, we would all be together, and my children would meet for the first time.
As this eve closes I am packing up my daughter's hospital room. I have learned how to operate her oxygen and feeding tube and change out her medical supplies and administer her medication. Her room at home is now finally clean and ready as I dared not set it up early only to have to take it all down should the worst have happened.
And tomorrow my daughter will be in my arms as I walk through my front door, and my sons will happily shout out "Mommy!!" as I bend down and introduce them to our latest living miracle.
(written on July 8, 2012. Nadia will be going home today! Please send thoughts and prayers to Nadia's family!)
