The latest

Yesterday Ben was being pretty cranky. He is usually a low key guy, he has his moments but he usually isn't that bad.  Well they noticed last night that his tummy was getting a little distended.  They did an xray, and found some inflammation in his intestines.  So they decided to stop feedings to allow his gut to rest and put him on antibiotics.

The doctor said he might possibly have necrotizing enterocolitis, also known as NEC. Don't look it up, I promise you just don't want to.  But his xray this morning showed improvement, so if he does have NEC then it is probably a mild case. Otherwise he might just have an infection which the antibiotics should clear up hopefully, and he would be able to start eating again in 3 or 4 days. If it is NEC, they will fast him for 10 days.  The thought of that about makes me want to cry.  I totally get it, NEC is bad news...but it is hard to think about your baby not eating. He will still get IV fluids and nutrition though.

I saw him today and he is not himself, but at least he isn't crying. Usually he is Mr. Wiggle Worm, moving around the isolette and pulling his various cords and things off of him, pulling his feeding tube out.  Today he is just still, and sleeping.

I can't even explain to you how difficult this is.  I just want my baby to be home and this means it is going to be longer until he gets here.

I hope that I never take for granted getting to hold him when he cries, even on those nights where he cries and cries and cries, and I hope I never take for granted getting to change every diaper, even when he poops so much it goes up his back and gets in his hair, and I hope I never take holding him for granted even when my arms hurt from carrying him around so much.

And I was just thinking how very, very un-normal my life is.  I thought that this pregnancy and baby would give me a little bit of "normal", like a way to relate to other moms. No.  It is very lonely. I have found an online group of women with preemies, some still in the NICU and some gone home, and it is so nice to feel like I fit in somewhere, even though it is only with a small minority of mothers instead of the large majority who get to take their babies home from the hospital a few days after they are born.  I also found a group of women who exclusively pump, some just have chosen to do that for various reasons, some couldn't get a good latch, some have babies in the NICU.  It's also nice to fit in there and commiserate with all the wonderful things that come with doing 100% pumping and to be encouraged on bad days.

I got to chat with a dad who had a baby in the NICU. Ironically, his baby's name was Benjamin too!  Their Ben was born at 35 weeks just a few days after our Ben was born, and was doing very very well when I talked to his dad.  I don't think he even stayed a whole week, and last night when we went there his room was empty.

So anyway, thoroughly depressing blog, right?  Ben's next xray is this afternoon at 4 p.m.; hopefully I'll be able to share a little sunshine after that!

Comments

  1. Sending you happy thoughts during baby Bens X-ray!!!!!

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  2. Check with your NICU nurse to see about a ProParent group. That would put you in touch with some other NICU parents. They continue to meet after release from the NICU too! So, it might be a group to help you feel less alone! Thinking of you and your family!

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  3. When I first started reading about your Ben in the NICU I thought about NEC and all I know about it and how scary it is and I hoped you would never face NEC with your little guy. I still hope you never do. But, whatever the outcome, I'm praying and hoping for a peace that surpasses all understanding for you and for your family.

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