Madeline Claire Moldow
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Madeline Claire Moldow was born at 39 weeks in scheduled c-section with no complications during pregnancy and no abnormal test results. When she arrived, she was grunting and dusky so they took her up the NICU. She was sporting a full head of dark hair like my husbands and we thought she was just full of fluid.
The next couple of days proved interminable as we started to learn that there were quite a few things wrong with Madeline. Upon x-ray of the lungs, they soon found butterfly vertebrae's and a couple holes in the heart. She also presented with an imperferate anus although she had a fistula near where the anus should be. They performed multiple tests and an MRI on her spine showed a cavity in her spinal cord and a possible tethered cord. They diagnosed her with Vater or Vacteral syndrome, an association of non related congenital defects of which she had a couple. A big concern was a T-E Fistula between her trachea and her esophagus, but after a barium pull, they ruled this out. All in all she would have to have a couple of surgeries in the next few months.
Needless to say, we were about as devastated as we could be after expecting a newborn with no problems. Our two and a half year old was "normal" and we couldn't understand how this could have happened. We comforted ourselves with the fact that these were "structural problems" and she would soon be like a "normal" kid after 6 months.
And then we learned she failed the hearing screening. And after waiting for a ABR hearing test found out she had a moderate hearing loss and would need hearing aides for the rest of her life. Once we swallowed that one, we thought OK - it can't get any worse. They let us out of the NICU after about a week.
But she also kept desatting while eating, meaning that when she ate, the oxygen level in her blood kept dropping. They thought she was aspirating and so put a NG tube in the feed her. She kept desatting so they kept her in the Intermediate Intensive Care Nursery at Lucille Packard at Stanford until they could figure it out. Unfortunately, after three more weeks - they had no idea but Madeline started to seem a bit better so they sent us home.
We had 4 glorious weeks at home including Christmas with my whole family and then Madeline got a cold. She started turning blue when she coughed so we sent her back to the hospital. They suctioned and basically watched her for 2 and a half weeks. Then they finally did a bronchoscopy and discovered her right bronchus was incredibly narrow and her left one was very floppy with bronchialmalacia. Upon hearing that she could lose her right lung unless she was put on continuous air pressure through a ventilator, we had her rigged up. The headgear to administer the CPAP was always falling off so in a couple of days, we went ahead and had a trach and Gtube put in. While it was traumatic, at least I got to see my baby's face again and that made it all worth it. She also seemed much more relaxed now that she was finally getting a decent breath and even started to smile!
So she has been on the vent for the past month and doing very well. We will go home next week and hope for the best. They think she will have to be on 24 hours for the first year, but after that, maybe only at nights and naps. We have been through every emotion possible as all you parents know and all we care about now is the health and happiness of our little girl. Will let you know how it goes. Please e-mail me with any great tips for vent/trach kids. Thanks!
