I’ve been pretty good about skipping one of the middle of the night feedings and letting the nurses handle either the 2am or 5am one. Well, this mom totally slept through her alarm and missed the 2am feeding…by two hours! Fortunately, there was enough of my milk stored in the NICU refrigerator to sustain Master Eat-a-lot.
I was elated to have Scott and the girls join me this morning. We hung out in the room, Scott and Anna-Laura took over the the Luke feeding and Clare and I played. Then, we actually got out of the hospital (hooray!) and enjoyed lunch together. Oh, how I needed that.
Our daily Luke report is that the feedings were increased to 24cc, his billy level is 11 (hoping it doesn’t make it to 12), his creatine level is continuing to go down and is now at .6, electrolytes are good as is his urine output. He has a nasty diaper rash, but he’s tolerating pretty well. His hiney is so tiny!! With each passing day his risk of complications decreases, but Dr. C reminded us that it’s still there. The biggest risk factor is the possibility of contracting an infection in his intestines which is why they slowly increase his feedings so the balance of good and icky bacteria stay in check. So, we’re cautiously optimistic and we’ll take today for what it is.
After lunch, Scott dropped me off at the hospital and I kissed the girls goodbye. That just never gets easy, and it was made worse by ALG crying and saying, “Mommy, I don’t want you to go.” Don’t remember a whole lot on the way back to the room. At least I had a place to cry in private. Those of you who have been in my shoes know the incredible amount of guilt you encounter when you leave one child to take care of another. If I could bi-locate I would so do that. And, not seeing Scott is hard. Texts and phone calls only get you so far 🙁 Please pray that we can endure this journey with grace. I know the kids are probably doing better than I think, it’s just hard. Sorry to be a downer…
On the upside, a good friend of mine picked me up and I enjoyed a home-cooked meal at her house which is just minutes from the hospital. I really, really needed that.
Tonight was just a tough one all around. At Luke’s 5pm feeding, he didn’t do a great job of finishing and he was just extra fussy. Not like my Luke. He wouldn’t even latch on to nurse, which has been the case most of the day. At the 8pm feeding we went from bad to worse. He spit up and nearly choked – thank goodness I’ve had a baby do that before or I would’ve been the screaming, crazy mom in Bay 2. He wouldn’t latch to save his life and he was screaming when I left. Definitely not my Luke. I called Scott in tears. Damn (sorry), the NICU is not for the faint of heart. It really is a roller coaster from one feeding to the next. At 11pm, I prepared myself for another rocky go. But, much to my surprise and delight, when I walked up to his bed the nurse was taking out his IV. Yeah, you read correctly. TAKING OUT THE IV!!!!!!!!! Basically, the IV gives them fluids, like glucose, to help them maintain their blood sugar while they’re not taking in as much milk. So, his feeding was increased to 26cc and if he can maintain his blood sugar levels, we get to say adios to the needle. I decided, after today, that I needed sleep. So, I’m just pumping twice and skipping the 2 and 5am feedings. You’ll have to check in tomorrow to see if the IV returns or not!
Recently I received an email from a friend on fb and her advice is some worth sharing. It really touched on what we’re going through and helped me gain some perspective. Thanks Ali.
“One day at a time. One ounce at a time. One doctor at a time.”
And, with that, I’ll call it a night.