We made it through the holidays without much fuss. We were handed off to a dietician associated with our cardiologist who gave us various directions as to how to feed our baby, and that was basically the most exciting thing that happened all December.
Come January, the appointments with various specialists started anew. Our initial pulmonologist referral had been sent to UCSF, but after the baby was hospitalized we ended up at UCD. (Thankfully — much closer!) We were even able to get the post-hospitalization appointment moved to the first part of the month.
After our experience in the hospital with oxygen, we decided we would ask the pulmonologist for supplementary oxygen for feedings in the hopes that it would get the baby off of her NG tube faster. He thought that sounded like a good plan and ordered a sleep study, thinking that it would show a lot of desats over night, which would help justify the need for oxygen to the insurance company. It would also have the added benefit of helping her gain weight.
Before the sleep study could be followed up on, though, we had a cardiology appointment. And here the echocardiogram showed that the right side of her heart had enlarged. Furthermore, he said that giving her oxygen would just speed up heart failure. We were sent home with an appointment to see the surgeon in a month.
Things were really getting exciting now. It had become clear from our visit to the pulmonologist that our baby’s health problems had, well, layers. There was no one explanation for why she had trouble breathing and trouble gaining weight, much less one for why she had problems with edema. She was premature. She had a hole in her heart. How much of a role did my mom’s family’s genetic tendency towards weak lungs play? Everything was connected, and every time we thought we had a solution, a complication popped up.
It quickly became clear, though, that the situation with her NG tube was becoming untenable. By this point, she had had the tube for nearly six months, and it was past its welcome in her throat. Her gag reflex became extremely sensitive, to the point that it was impossible to give her a pacifier and nearly impossible to give her a bottle. The volume she was able to take by mouth went down to a mere 10-15 ml, and she was just spitting up a lot.
Faced with this, coupled with the fact that she could not have oxygen, we decided to have a gtube placed. Her eating problems were here to stay, and it’s vital that she maintain her weight gain so that her lungs have enough calories to keep growing. (Ironically, she lost weight as a result of the gtube surgery and fell five percentiles, she has been steadily regaining weight since then, though.)
And that brings us to where we are now. She had her surgery two weeks ago. She is happier than ever, ecstatic that her hated face tube is gone. Now comes the hard part, though. Now we are dealing with a feeding aversion, the one thing we had all done our best to avoid.
Adventures At Home 