Out springs hope

It’s funny how life works. I was just getting ready to sit down to write a post about how my hopes that Colin would come home in September seemed to be ill-founded, when John came downstairs with good news. 

Colin has been breathing “heavy” for several days — his breaths move his whole body and head, not just his chest. Although he has been maintaining good levels overall, the doctor decided to raise the oxygen to 3 liters and 30% (from the 2 liters and 28% we had been at). This was a big step backward. 

When John called this morning to check on Colin’s weight (he hit four pounds last night), the nurse said she had noticed a funny sound by Colin’s crib last night. When she investigated, she discovered a leak in his oxygen. She had the respiratory tech come fix it, and afterward was able to drop Colin’s oxygen to 1 liter and 21% (pretty much the lowest setting). 

If Colin is able to maintain his saturation levels at this setting, and the nurse is successful in getting the doctor to write an order making the adjustment official, we will have taken a giant step toward the door. 

Colin also is starting to get an opportunity to take a bottle more often. Unlike Veronica, he rarely forgets to breathe while eating. (She still needs to be reminded periodically while she’s nursing.) His biggest challenge is having the energy to drink enough.

The past three days, I have been able to get him to take 10 ml (out of 30) twice and 5 ml once when I have given him a bottle. John was only able to get him to take 5 ml last night, but his night nurses have been able to get between 20 and 25 ml several times. 

We’re going to try giving Colin fresh (never been refrigerated) milk at noon today. His nurse from last night also is a lactation consultant, and she thinks he will like the taste of the fresh better, and will be more likely to take the whole bottle that way. 

If this works, I may end up spending more time at the hospital around feeding times again, just to help set the pattern for him. I also am planning to try breastfeeding Colin at the end of the week to see how he takes to that.

Veronica continues to do well at home. She has her fussy days and nights, and her good days and nights — just like any newborn. I will be very happy when we no longer have to lug the apnea monitor with us everywhere. It’s nice to be reassured even when we’re busy elsewhere that she is breathing fine, but it certainly makes it harder to move from room to room with her. 

Tomorrow we have an appointment back at the hospital for her to have another head ultrasound. Her ultrasound from the day prior to her discharge showed signs of a brain bleed (a small, level 1 bleed). Because of this, we need to monitor whether it is resolving itself, or getting worse. I, of course, am praying that the bleed appears to be resolved and tomorrow’s appointment will be the end of it. But only time will tell.