Thursday, September 25, 2008

heads i win, tails you lose

When you decide to have a baby, you're really just flipping a giant coin, or rolling a giant set of universe dice. If you're lucky, like so many of us, you get a mostly perfect baby with no outward signs of dysfunction. If you're not so lucky, like so many of us, you get a baby with some serious problems.

We are about to be placed on the OR schedule for placement of a permanent gastrostomy tube. It is the only way my baby can come home and eat safely. Part of the surgery will also tighten the sphincter muscle in his tummy so he will not reflux and choke. I watched him do that very thing yesterday and he turned blue right in front of me. It was horrifying.

I hate this. I hate it so much I can barely breathe. Mostly I hate that if I say the words "feeding tube" people will think I have a disabled baby or something, and I DO NOT. My baby is so beautiful and perfect and I love him so desperately...and I don't want anyone looking at us with pity. He just can't eat. And right now I will do anything to get him out of that NICU. To get him away from the many, many doctors who come in and poke and prod him every damn day. He needs to come home and be loved and cuddled and held and played with, and yes, fed through a stupid old tube into his belly so he can grow and get strong and hopefully show all those stupid old doctors that he will be just fine.

11 comments:

Pam said...

Oh Kate - he is gorgeous!

You are soooo right - tube or no tube, it gets him home where you can love on him and hold him for endless hours every day:)

Louise said...

He's beautiful. I'm sure home will be just where he needs to be.

Ruth said...
This comment has been removed by the author.
Sherry said...

he is too beautiful. Prayers still coming your way daily.

Ruth said...

Oh, Kate. What a lovely picture. He is just gorgeous. You're right ... home is where he needs to be.

When HL was just shy of three, she had a febrile seizure and stopped breathing. I remember the terror I felt, and am so sorry you have had to experience it, too. Continuing to keep you all in my prayers ....

Jenn said...

He is beautiful!

shelley said...

He is beautiful!

I used to look after a little boy named Peter. His mom told me that she went into labour prematurely. It turned out that the doctor knew there was something wrong with the baby and had scheduled her for a cesarean the next day (when she thought she was booked for a regular prenatal exam). The night Peter was born, he was immediately rushed to emergency surgery. His esophagus was attached to his lungs intead of his stomach. Had they fed him, he would have drown. To do this they had to break through his ribcage, while they were in there, they fixed two other things. He was in hospital for months and until he was 18 months old, they had to be careful how they picked him up because of his ribs. When he started on solid food around 2, everytime he took a bite he would turn blue and pass out, then his colour would return and he would fine. every bite. they took him to the doctor and they found out that his trachea was loose and floppy and the food would cause it to collapse and he would pass out. he had to have a metal stent insterted to give him some stability. He had it taken out when he was five, and had to be careful to chew his food slowly and a lot. Right now he is 16, learning how to drive and your typical teenager and you would never know that anything had ever been wrong with him.

One day you will never know that he had any issues at all :) He is adorable!!!

Karen said...

He is a gorgeous baby. I hate it that you're going through this. I'm praying every day.

HangerMom said...

I'll be praying for you to get your son home soon. I have a cousin who just a week or so ago brought home her daughter with a feeding system that I believe is the same as your son will have. They're doing wonderfully with it, though obviously it's extra work. She, like you, was just very happy to have her baby home and in her arms whenever she wanted her.

God bless you and your baby. I'm thinking of you often.

Mrs Lemon said...

You are in my prayers, Kate, and your sweet little boy.

Kyleen said...

He is indeed precious and perfect! God bless your new little one and I pray he is home with you soon.