In a whirlwind of pregnancy, a Down syndrome diagnosis, and a heart defect, the "double bubble" was the final, overwhelming, "not something else!" prenatal diagnosis. Since I frequently am asked about our experience, I wanted to share answers to some frequently asked questions.
Was Ellie born early?
No. She was a day late, much to everyone's surprise. My fluid levels were high, but Ellie wanted to stay put. She was born via c-section after an induction.
How long was she in the hospital?
She came home when she was three weeks old.
When did Ellie begin eating?
First, let me say that the feeding tube was a big fear of mine, but Ellie never had one. She did have a nose tube for drainage. After the nose tube came out, Ellie began four or five days of 5 mL of milk every three hours. She slowly worked up to 70 mL,by bottle. At three months. Ellie decided she was cool with nursing. At four months, she took half her feeds by bottle (formula) and nursed the other half. She stayed on that pattern until about 7-8 months, when she was partially weaned, largely for mom's sake. She switched to formula only at ten months, but was onto solids fully by 13 months. At age two, she is a champion eater who loves curry, burgers, pasta, and cookies.
How was the NICU?
While most of our nurses were amazing, the NICU experience is inherently stressful. We opted to come home to sleep, but I spent the majority of each day in Ellie's room. I would recommend asking plenty of questions, developing good relationships with the nurses, helping with your child's care, and of equal importance, taking care of yourself while your child is in the NICU.
Any other advice?
Speak with surgeons and learn about the NICU in advance. Have a plan if your child's surgery will be at a different hospital than the delivery hospital. Don't forget to sleep. And bring books, little toys, etc. to the NICU to help it feel like home for your baby. Your baby may not notice, but the little touches of home made me feel better.
Finally, connect with other moms! I keep a list of email addresses for those looking to connect, so feel free to email me if you're looking for more info.