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.
He was latched when he went blue and limp in my arms. I put him in the crib, yelled for the nurse, and grabbed the tiny ambubag. I couldn't tell if he was breathing. The room filled with people, and baby turned pink again. We decided we had better do a swallow study, and feed baby through a tube until then. Of course, this was a Friday and the swallow study couldn't be scheduled until Monday.
Our baby was underweight on admission, and the doctors and dieticians had been pressing us to supplement with formula. The idea was abhorrent to us at the time, for many reasons, and we declined. (Looking back now, I can see how skinny he was. I couldn't see it at the time.) Now that he would be tube fed, it was a good time to give him some extra calories. A dietician came to see me. Based on his caloric needs, plus some to help him gain weight faster, he would need something like 1.2 liters of breastmilk a day. I wasn't making half that. I despaired. We supplemented with formula for the first time. It was gross, it didn't agree with his tummy and his poop smelled foul. I met with the dietician again. She calculated that to meet his protein needs, baby needed 850 mL of breastmilk a day, and we could increase the calories with fats.
I was heartened. I wrote a whole separate post about pumping and increasing supply here.
On Monday the swallow study showed severe swallow dysfunction and aspiration. I would not be allowed to nurse my baby. I loved nursing my baby. It was such a sweet, easy thing for us. I couldn't believe I was losing that, too. Later that day, I was alone in baby's room. The chaplain came to visit. I told him about the swallow study, talked about my grief. Cried. He sat with me, held my hand, and bore witness to my sorrow.
(Months later, he married us in a tiny ceremony in a redwood grove on the winter solstice.)
The medical team thought the sclerotherapy had stunned some of his cranial nerves; that would explain the droopy eye, the paralyzed mouth, the impaired swallow. We hadn't known those were risks of sclerotherapy; apparently these side effects are so uncommon, the doctors didn't know, either.
No one knew how long baby would need to be tube fed or what to expect. With no swallow, baby had a hard time managing the secretions in his throat. His lungs sounded junky and his breathing was labored--not because of the lymphatic malformation, just because of mucus and saliva. He needed oxygen and frequent suctioning. We couldn't manage his breathing at home. We just had to wait for his swallow to improve, so his breathing could improve, and we could go home. After a week or so, we started to see some movement in the left side of his mouth, and his breathing improved a bit, but not enough.
We had a family conference with the care team. The doctors said, "The fastest way to get you home is to do a tracheostomy and a g-tube."
Do you know how hard it is to make the leap in your mind, from having a baby with a treatable medical condition, to a baby with significant long-term medical needs? Very hard. My inner child yelled, "This is not what I signed up for!" But I am a nurse, and she said, "We are seeing some neurological improvement, so I think it's best to hold off on invasive surgical interventions for now." Then I went to the bedside and cried.
Some of the PICU fellows we had become friendly with over the months came to see us. We talked about trachs and babies who need them. They said that, for some babies, it is clear that their lives would be better with a trach, so they get them, and their lives improve dramatically. But for my baby, they agreed, it wasn't a clear decision. If it was, of course we would have done it, and dealt with it, and figured out how to be happy. That's just what you do when you are a parent. But trachs are risky, and our baby seemed to have adverse reactions to every medical intervention we tried. We didn't feel a trach was a safe option for him. So, we waited.
I remembered Nursing 101 and started putting baby on his tummy to sleep, so that the secretions would drain out his mouth instead of down he back of his throat into his lungs. It worked. He required less suctioning and less oxygen.
After another week, we did another swallow evaluation, which showed some improvement but still significant aspiration.
We waited and waited. The good news is, he was happy. He was awake and not in pain. He was gaining weight. He loved playing with the pretty nurses, and the pretty physical therapists. He got stronger and started rolling over. He smiled a lot. His first teeth started to come in. Friends and grandparents visited. He was popular with the nurses, who loved to snuggle him when he woke up at night and we were sleeping in the upstairs parent lounge.
Finally, we all agreed that he'd improved enough to go home. We went home with a feeding tube and the plan to do another swallow evaluation some weeks later.
He was still handsome and sweet, even with a swollen neck, a droopy eye, an asymmetrical smile and a tube coming out of his nose. Poor baby. Poor us! His spirit, grit, and sense of humor shines through. I like my baby so much.
(Yes, we had to put that tube back down his nose when it came out. It was about as fun as you imagine it to be.)
Eventually, after he got that tube out for the nth time, we just stopped using it and bottle fed him instead. I never did get him back to the breast. I still feel a sense of loss about that.
We are starting to have a little perspective on the whole thing. It was terrible. Easily the worst thing we've been through. But, our baby is breathing now. He's eating now. He's standing and crawling and almost walking. He is still the very best thing.
And we were married. Even after all we went through.
And we all lived happily ever after.
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.
He was latched when he went blue and limp in my arms. I put him in the crib, yelled for the nurse, and grabbed the tiny ambubag. I couldn't tell if he was breathing. The room filled with people, and baby turned pink again. We decided we had better do a swallow study, and feed baby through a tube until then. Of course, this was a Friday and the swallow study couldn't be scheduled until Monday.
Our baby was underweight on admission, and the doctors and dieticians had been pressing us to supplement with formula. The idea was abhorrent to us at the time, for many reasons, and we declined. (Looking back now, I can see how skinny he was. I couldn't see it at the time.) Now that he would be tube fed, it was a good time to give him some extra calories. A dietician came to see me. Based on his caloric needs, plus some to help him gain weight faster, he would need something like 1.2 liters of breastmilk a day. I wasn't making half that. I despaired. We supplemented with formula for the first time. It was gross, it didn't agree with his tummy and his poop smelled foul. I met with the dietician again. She calculated that to meet his protein needs, baby needed 850 mL of breastmilk a day, and we could increase the calories with fats.
I was heartened. I wrote a whole separate post about pumping and increasing supply here.
On Monday the swallow study showed severe swallow dysfunction and aspiration. I would not be allowed to nurse my baby. I loved nursing my baby. It was such a sweet, easy thing for us. I couldn't believe I was losing that, too. Later that day, I was alone in baby's room. The chaplain came to visit. I told him about the swallow study, talked about my grief. Cried. He sat with me, held my hand, and bore witness to my sorrow.
(Months later, he married us in a tiny ceremony in a redwood grove on the winter solstice.)
The medical team thought the sclerotherapy had stunned some of his cranial nerves; that would explain the droopy eye, the paralyzed mouth, the impaired swallow. We hadn't known those were risks of sclerotherapy; apparently these side effects are so uncommon, the doctors didn't know, either.
No one knew how long baby would need to be tube fed or what to expect. With no swallow, baby had a hard time managing the secretions in his throat. His lungs sounded junky and his breathing was labored--not because of the lymphatic malformation, just because of mucus and saliva. He needed oxygen and frequent suctioning. We couldn't manage his breathing at home. We just had to wait for his swallow to improve, so his breathing could improve, and we could go home. After a week or so, we started to see some movement in the left side of his mouth, and his breathing improved a bit, but not enough.
We had a family conference with the care team. The doctors said, "The fastest way to get you home is to do a tracheostomy and a g-tube."
Do you know how hard it is to make the leap in your mind, from having a baby with a treatable medical condition, to a baby with significant long-term medical needs? Very hard. My inner child yelled, "This is not what I signed up for!" But I am a nurse, and she said, "We are seeing some neurological improvement, so I think it's best to hold off on invasive surgical interventions for now." Then I went to the bedside and cried.
Some of the PICU fellows we had become friendly with over the months came to see us. We talked about trachs and babies who need them. They said that, for some babies, it is clear that their lives would be better with a trach, so they get them, and their lives improve dramatically. But for my baby, they agreed, it wasn't a clear decision. If it was, of course we would have done it, and dealt with it, and figured out how to be happy. That's just what you do when you are a parent. But trachs are risky, and our baby seemed to have adverse reactions to every medical intervention we tried. We didn't feel a trach was a safe option for him. So, we waited.
I remembered Nursing 101 and started putting baby on his tummy to sleep, so that the secretions would drain out his mouth instead of down he back of his throat into his lungs. It worked. He required less suctioning and less oxygen.
We waited and waited. The good news is, he was happy. He was awake and not in pain. He was gaining weight. He loved playing with the pretty nurses, and the pretty physical therapists. He got stronger and started rolling over. He smiled a lot. His first teeth started to come in. Friends and grandparents visited. He was popular with the nurses, who loved to snuggle him when he woke up at night and we were sleeping in the upstairs parent lounge.
Finally, we all agreed that he'd improved enough to go home. We went home with a feeding tube and the plan to do another swallow evaluation some weeks later.
(Yes, we had to put that tube back down his nose when it came out. It was about as fun as you imagine it to be.)
Eventually, after he got that tube out for the nth time, we just stopped using it and bottle fed him instead. I never did get him back to the breast. I still feel a sense of loss about that.
And we were married. Even after all we went through.
Kate-- I'm so sorry for all that you all went though. You are an amazing mama, raising an amazing baby!
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