Seven steps back

This is not the post I was hoping to write today.  Instead of settling in at home, we are settling back in for another week in the hospital due to Elyse having a spell yesterday.  She had choked a little during one of her early morning feeds and her oxygen dipped, but the doctor thought it might have been an isolated incident and was willing to continue with the discharge this weekend if everything continued to go perfectly.  It didn't.  Her feedings were hit or miss all day, and later in the evening (during her eye exam) she had an even bigger spell/desat which required stimulation and a bit of supplemental oxygen.

After the spell, the doctor ordered some blood work as well as an abdominal x-ray.  The blood work did not show anything of concern, and her hemoglobin has even started to increase which is great news.  The x-ray however showed some non-specific patterns, which could not rule out the start of an infection or inflammation of the gut.  It may end up being nothing at all, but as a precaution they decided to rest her gut overnight (i.e. suspend oral feeds and supplement with intravenous nutrition instead) as well as start precautionary antibiotics until the blood cultures have had time to grow (approximately 48 hours).  Here we go again.

 portable x-ray machine

 

It was tough to see her this morning, hooked up to the IV again and back in an isolette for better observation.  It just felt like one giant step back.  The good news is that her follow up X-ray looked good, and there doesn't seem to be any sign of NEC.  Now we are wondering if she might have been reacting to the new fortifier, since it was just introduced recently.  The plan will be to start her back on breast milk only (without any fortification), as it will be gentler on her system.  I spoke to the lactation consultant and we are going to try some "lactoengineering" to isolate the most calorie-rich milk for her.  This will involve pumping the foremilk separately from the hind milk, and only feeding the latter.  I am hoping that if she continues to gain weight on the milk alone, that perhaps she won't need fortifier at all?  Only time will tell, but I am happy that she is getting back on track.

 

not the way we had hoped to spend today

 

I am so frustrated, and tired, and done with this whole thing.  Being so close to the end has made these last two days some of the most draining ones yet, and so very emotionally taxing.  Looking on the bright side (there is always a bright side), I am thankful that she had these episodes at the hospital, and not at home.  Also, our house has not been this clean in a long time.  And in the grand scheme of things, a few more days is certainly worth bringing home a healthy baby and being confident in her ability to stay that way.