What we've been through (part II)

Baby's third hospitalization must've started toward the end of August. He was four months old. By the time we were released, baby had spent more than half his life in the PICU.

We went to our ENT doctor when babe's breathing was troubled again. We packed our bags this time, expecting to be admitted again. We were planning to go to our friends' wedding over Labor day weekend and expected this hospitalization to be quick and easy like the last one.

My memories of the first days are vague. We knew that if the sclerotherapy wasn't successful, the doctors would press for a tracheostomy. We still didn't want to do that, but it was starting to look like the other options weren't working. We were admitted, the sclerotherapy scheduled. We tried to extubate immediately afterwards, but baby didn't tolerate it. He had to be reintubated. We slept at home on the nights baby was sedated and intubated. I was pumping breastmilk for him to be fed through a tube. When we did extubate a few days later, baby had a facial droop. The left eye was still droopy from the first procedure, but now the left half of his mouth drooped, too. Actually, "droop" is too mild. It was totally paralyzed. I was anxious about his ability to swallow, but the doctors said we could try to breastfeed.

In the days after intubation, it was really difficult to get the baby to nurse and make sure to pump enough to maintain supply. The drugs made baby irritable. He wouldn't latch. When he did, I wasn't sure I could hear him swallowing. I wasn't pumping enough because I wanted to have milk for him when he did nurse, and I thought that at any moment he would feel better and I would have my happy, hungry baby back.

What we've been through (part I)

 I've mentioned many times here that my baby was sick. His first birthday is fast approaching, and so is the March for Babies, and our doctor says that there's an 80 percent chance he will never need more intervention. We are cautiously optimistic. Our babe is a normal, happy, healthy 11 month old.  Last night I dreamed that I became a pediatric nurse. I cried in my dream, because my heart still hurts so much, and being around sick children all the time would be so hard. But it felt right, because now I have greater compassion and respect for parents and the urge to help other families through such trying times.


Around 26 weeks in my pregnancy, my midwife sent me for an ultrasound because my baby was measuring small. The ultrasound showed a healthy-sized baby with a cyst in his neck. The doctor thought it was a benign branchial cleft cyst that would resolve on its own. I had a follow-up ultrasound four weeks later, which showed no change, and my midwife and I agreed to continue with our plan to birth at home.

I had a very long labor, and babe was born at the hospital. He was perfect and vigorous. We enjoyed a blissful 6 weeks at home. We learned to breastfeed and my postpartum recovery was pretty easy.

At our one month well-baby visit, our pediatrician was worried because baby's breathing was noisy (lots of snoring and snorting sounds), and the cyst in his neck was now visible, an egg shaped lump below his left ear. He suggested we go for an ultrasound. We didn't want to. We didn't want there to be anything the matter with our child.
"How about next week?" we said
"How about tomorrow," said our pediatrician.