Thursday, February 20, 2014

Perspective and expectation.

As some of you may have seen on Facebook, Baby C and I are still in the hospital.  I'm officially discharged and staying in a patient room by the grace of the powers that be.  Baby C is still in the special care nursery undergoing photo-therapy and monitoring.  The short version is that having a baby in the NICU is easy, removing said baby from the NICU is amazingly hard.  He's been monitored since birth, so every little potential problem becomes something else to "watch for a couple more days."  Once one thing has been resolved, something else crops up.  His breathing (the original reason for entering the NICU) was resolved withing the first few hours, but because he was in "distress," he had to stay there for 48 hours of antibiotics.  During those 48 hours, it was discovered he had low calcium, then just before the 48 hours were up, his bilirubin levels started to climb (high bilirubin is jaundice).  So we got to take him off the IV for the antibiotics, but we had to start supplementing a little formula for the extra calcium and doing photo-therapy for the jaundice.  We resolved the calcium a couple of days ago, but around the same time, they decided they wanted him to gain a little weight before they would release him.  As a side note here: he hasn't dropped an unruly amount of weight.  It's the same weight loss you'd see in a full-term baby at home.  So that meant we had to keep doing the supplement after each feeding, but they changed the formula to a high calorie one.  They also limited how much time I was allowed to breastfeed so that he wouldn't waste any of those calories.  We're dealing with it.  After two days of the bili-blanket, his levels are going down, but in that time, they noticed that he was doing a funny thing where his heart rate would drop for a second then his oxygen level would drop a little for a second.  It immediately goes back up every time, but it happens a couple of times a day, so now he has to stay on the monitors for observation of that.  They want a couple of days without him doing that funny thing before they will consider releasing him. 

I'm tired.

I want to go home with my baby and do the normal exhausted, new baby stuff at home. I understand that Baby C was 4 weeks and 3 days early, but the situation wears thin after a while.  I've been told that he's doing great and that I should be glad if he goes home before his due date a few weeks from now.  The thought of expecting him to be here until March 17th makes me extremely depressed, so I fool myself every day by hoping something will happen that will let him come home.  This, too, is tiring.  Hope can be draining. 

Enter into the mix the subsequent appearance of not one but two new babies into the NICU.  I'm in that nursery every 3 hours to feed Baby C, so I'm privy to more knowledge than I should probably have about those two babies.  The funniest part about the situation is that the first baby had the same name as Baby C.  We thought we were so original.  At least they spelled it differently.  That baby was a twin, the bigger twin, and he only lasted a few hours with us until he had to be transferred to a bigger hospital with a better NICU.  Eli and I were heading out to lunch when they were transferring him.  It was like something you see in the movies.  The big plastic case surrounding the baby with the arm holes along the sides.  He was being air lifted to the other hospital and there were people with stethoscopes all around him.  He was born at 38 weeks, and Eli thought it looked like he wasn't breathing on his own.  We'd just finished a conversation lamenting the time Baby C had already spent in the NICU and whining about how we wanted to take him home.  It was sobering to share an elevator with that sick baby and realize that it could easily have been Baby C.  This is the perspective.  Our baby seems to healthy that we forget he was so early.  Also, we have no experience with preemies and what is normal for a baby born at 35 1/2 weeks.  This is the expectation. 

We move forward a few days to today, and there is another addition to the NICU.  Another little boy born at 36 weeks.  The nurses were marveling at how busy they've been the last week with early births.  I was heading to the nursery to feed Baby C earlier, but I saw through the window that the other baby was surrounded by people wearing masks and scrubs.  Never a good sight.  I decided to just let the nurse on duty know I was ready to do the feeding thing whenever was a good time and go wait in my room.  I got a call about 15 minutes later that I could come on down to the nursery.  There were still a a few extra people in the room, including one person in a mask and scrubs.  We got Baby C all situated, and they went back to work on the other baby.  He was having trouble breathing, but his trouble seemed a lot worse than what we'd had.  He had a lot more wires attached to him for one.  For two, I could hear him wheezing for breath.  There goes that perspective again.  C was all warm and wiggly against me, and gulping down milk, and this other baby was trying so hard.  My hormones required that I get all teary-eyed, but luckily everyone was too busy to notice me get all leaky.  C ate like a champ and went back to sleep wrapped up with his warm little glow light.  This is the point where I tell you that I'm officially changing his name on here to Glowworm.  It's what I've been calling him in my head when I see him all bundled up and glowing blue.  My little glowworm.  And I have no idea if he's way healthier than he should be after being born so early.  This is where I need to set my expectations better.  I'm going to do some research today to see what's "normal" for 35-36 week preemies and set my expectations there.  I would much rather be happy that he's breathing on his own and feeding well than upset because I have to wait "just a few more days" for him to prove that he's healthy enough to go home. 


Ruth Houser said...

Brummer, I work in A NICU and see the other side of things. At 35 weeks some baby have bad breathing problems and end up with a breathing tube and on a ventilator or use some oxygen in their nose through a cannula here in Denver. SInce Your baby is graining weight and not on oxygen
sound like he is doing great!

2Tone said...

Hang in there sis! Can't wait to meet the little glowworm. :)

The Nutshell Librarian said...

This is beautiful writing. You so eloquently capture the crazy mix of emotions resulting from your extended stay at NICU. We are following your progress closely and hope you and little Caden go home soon!