Sunday, January 27, 2013

Starting to Crack

Feeding is still not going well.  All of the other preemie babies I've met online are about to go home (not that that really matters, but it does increase the pressure).

Dylan is supposed to take 60mls every 3 hours or 78 every 4 hours.  His best is 48 and he's been in the 40s about 6 times.

But at his last feeding for me today, he took 4.  And that's pretty much how the last few days have been going.  I feel like we are moving backwards!  For the past couple of days, he has brady'd just about every time he's taken a sip of milk.  It's driving me nuts.  I can't help him. I can only keep doing what I'm doing.

We've tried a bunch of different things to help him: moving his feeds from 3 to 4 hours to increase his appetite, switching from Prilosec to Prevacid to control his reflux, changing feeding position, changing nipple flow.

Nothing will make me feel better except for him improving.  I feel like I'm starting to lose it.  Sure, he's come so far, but that doesn't really make me feel any better because we are stuck right now.  Stuck at the hospital.

Every day, I wake up and go to the hospital and my mood is determined by our feeding.  I stay pretty calm although at times I plead with him to eat, or make up songs to get him to eat.  But if it's really bad, I give up and just hold him which is much nicer than forcing a nipple into his mouth.

There's nothing to do about it.  Am I going to just stay in bed all day like I'd kind of like to do?  No.  Just keep going to the hospital and keep trying and just wait.  The constant tension in my shoulders is just here to stay.

I kind of feel like I want to cry, but haven't.  I just feel exhausted, irritable and kind of desperate.


  1. Been following your story for a while. Just curious as to why they won't send him home with an NG tube and an apnea monitor? Seems like pretty standard stuff for a preemie. Second opinion?

    1. I think they would at some point, we're just not quite there yet.

  2. I hate so much that he's still there! Wish I could speed it up for you.

  3. The days before discharge are so, so hard. So close to home and yet it feels so, so far. I'm telling you, he's going to just wake up one day and "get it." You will have your mind blown. Seriously.

    Sending many hugs your way.

  4. Oh so sorry!!! He will surely get it soon. Poor momma!

  5. Stay strong, he really has come very far and as frustrating as it seems I get this feeling that you're so close to him going home you know. Keeping you in my thoughts as always.

  6. Thinking of you and sending hugs your way ((HUGS))

  7. Soon it will click. Just like babies know their own birthdays, he will get the eating thing in his own time (and it's awful having to wait for the surprise because it's been so long to have to wait and be so close). We're all here cheering you on, hoping that today is the day! It will be soon!

  8. Praying that Dylan starts to take more at feedings so that you can go home. I cannot imagine the stress of having your baby in NICU and not being able to be with him 24/7 for months. Sending hugs and hoping that you are taking care of yourself as well.

  9. I know this must be torture. I only know what it's like to have a baby who won't nurse and who doesn't latch onto the bottle well. It sucks. I can only hope for you and D that things get better soon and you can bring your little man home. Hold strong!

  10. For what it is worth, maybe talk to his doctors about letting Dylan put himself on his own schedule. When our three were in the NICU, two of the they had to fight to get the full amount down them. Neither of them ever made it to their goal. Their stomachs are just so small. They adjusted the time on their feedings. Instead of 60ml, every 2 hours, they did it ever 3-4 hours. The doctor let the one we had the most issues with on feeding be an eat on demand baby. Once they switched her schedule to that, she ate like a champ. It's worth talking to the doctor about. Every baby is different. Not ever baby is going to eat on their schedule. Maybe he wants his own schedule.