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.



The ultrasound became an MRI, which required sedation, intubation, and an overnight stay in the pediatric ICU. He was only 7 weeks old. The baby cried all night after he woke up from the sedation. I knew the nurse taking care of him from nursing school. We visited an ear, nose and throat specialist at Stanford. She wanted a sleep study. The day after the sleep study, while we were in her office, the results came in. She directed us to go across the street, to the pediatric ICU at Lucile Packard, and be admitted. It was a Friday afternoon. Our doctor, a kind but very direct woman, looked at us and said, "Get in survival mode." The diagnosis was airway obstruction secondary to a lymphatic malformation. Our baby had severe sleep apnea and was at risk for total airway obstruction. It felt like the world was crashing down.

Over the following days, we met with many specialists and discussed the treatment options. Baby's airway was maintained on high-flow oxygen, which was enough to keep his airway open and his oxygen saturations up while he slept. We stayed at the hospital day and night. We were able to continue breastfeeding. The doctors told us that the first line treatment for these sorts of lymphatic malformations used to be, and remains at many hospitals, a tracheostomy. We refused. We could try sclerotherapy, they said, which is a needle procedure. It's generally safe and usually successful after a few treatments. We agreed. We hoped for a quick fix.

He had his first sclerotherapy procedure early the next week. Both the grandmas and some of our friends came to support us. Baby was to have nothing by mouth for four hours before the procedure. He was a trooper until the scheduled time for the surgery team to come and get him, but nothing ever happens on time in a hospital. When they finally arrived, baby was crying loudly for food. Handing my crying baby to strangers felt so wrong. My arms and breasts ached.

I don't remember what we did while he was gone. Probably we went to have lunch somewhere. When they brought baby back to his room, the doctors told us the procedure had not gone as well as they'd hoped. Our 8 week old baby was lying in his hospital crib, sedated, intubated and ventilated. We were so sad.

They tried the sclerotherapy again a few days later, and then he was intubated and sedated for a few days more after that. I think it was nearly 2 weeks before I got to hold my baby again. Those were long tedious days of waking up still tired, going to the bedside, pumping breastmilk for baby, always pumping and fretting, talking with doctors, talking with nurses and social workers and chaplains, praying, touching our baby, talking to our baby.. I tried to read him stories, but each time I had to stop because the pain and grief was so close. I read a few pages, started to weep, and had to stop. Many times.

This hospitalization was long and complicated. The prognosis was unclear. The kind of lymphatic malformation my baby has is rare and difficult to treat. And he experienced side effects of the sclerotherary: a droopy eye, and the external part of the cyst swelled up even more. Baby developed a blood clot at the site of his central line in the right side of his neck, which caused even more facial swelling, and meant injections of blood thinners twice a day. He had a blood stream infection, requiring IV antibiotics and more days in the PICU. We felt we were making all the wrong decisions. We felt the medical care he was receiving was hurting him more than helping. It felt like purgatory, trapped inside a children's hospital. Waiting.

Eventually, baby improved. The swelling went down and the tubes came out. He breathing was easier. He went back to the breast with no difficulty. They let us go home. That hospitalization lasted 4 or 5 weeks.

 He is about 3 months old in this photo. You can see the droopy eye and the swelling in his neck on the left. He had such a beautiful, symmetrical face before. It's been hard to stop feeling like we allowed the doctors to maim our perfect little boy.


Waking up in our own bed is a pleasure. I remember feeling so content, snuggled in our bed like puppies in a row: my husband, me, baby, and the cat.

Over the next weeks, baby's breathing became noisy and labored. We again visited our ENT, and again walked out the back door of the clinic, across the street to the hospital, and got admitted to the PICU for our third sclerotherapy treatment. This time there were no hiccups and we were out within a week.


I will write about out third hospitalization next time.
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EDIT: Part II is now up here.