Monday, April 18, 2005

Day 9 - Morning Update

No word yet on the results.

Over the weekend, I spent less time at the hospital (only 6-8 hours per day instead of 12-14) and more time with Janie. It was nice to have a break, but at the same time it was very difficult. When I'm at the hospital I feel guilty that I'm not with Janie. When I'm with Janie I feel guilty that I'm not with Jack. Two kids but I can only be in one place at a time. I'm looking forward to when they are in one house so I don't feel so split in half.

Yesterday Jack got to put on a onsie, first time wearing clothes in a week. He was also moved from a 'table' to a crib. I take these as positive things.

Today he turns two weeks old. Here's what I've learned about Jack (besides HD) in that time:

  • His scent. It's sweet and familiar but hard to describe. Kind of like lemon cookies.
  • He hates diaper changes, getting his temperature checked, and the blood pressure cuff.
  • He loves to be held. He snuggles in and stops crying.
  • He likes to sleep with one arm up. It doesn't matter if he's sleeping in his bed or being held.
  • He loves his pacifier. With our daughter I was very anti-pacifier so she never used one. With Jack, he gets so hungry but he can't eat. He'll suck on that pacifier with a fire and determination, and it usually helps him to relax a little.
  • He farts. The doctor said it doesn't mean anything as to the health of his plumbing, but each time he does it I get a little hopeful.
  • He likes to sleep on his tummy with butt in the air. He can sleep on his stomach at the hospital because of all the monitors. He's going to be upset when he gets home and can't sleep on his tummy any more.
  • He has the tiniest eye lashes. And his brown fuzzy hair is so nice to touch. I can't help but stroke his head all the time.
  • He is probably the largest baby in the NICU, and to me looks to be the healthiest looking, breathing room air and having no emergencies. He's very quiet and content, so probably the easiest baby for the nurses.
  • He is irrestistable. I can't help but love him.
This weekend as I was playing with Janie and working on chores, it's easy to forget a few minutes that I even have a baby. I'm not pregnant anymore. There's baby stuff everywhere, but it's all brand new and unused. I have to pump every 3 hours, but I really haven't been able to have a full feeding session with an actual baby. I drive around with an empty carseat in my van. It's like I don't have a baby but that the whole thing was a fantasy. I created the miracle pregnancy and beautiful baby in my head.

But then I go to the hospital and I get to hold him. And I feel like his mother and that he is my baby. I smell him, I touch him, I kiss him, and just stare at him as I rock him.

I'm scared of getting today's results. That it will send Matt and I back down to that dark place. That my baby is then going to be able to go into the next surgery at a moment's cancellation. That he will be in some danger again while he's in surgery. That it will end up with a stoma for sure. There's no avoiding it, and I know it will happen, but even now I still hold out the tiniest hope that maybe they're wrong. That all these biopsies will turn up with cells and he will only need a small operation.

So foolish.


Blogger Floyd said...

Not foolish - any parent would be in your situation. Please try not to beat yourself up to much with guilt right now - you're doing the absolute best you can and from an outsider's view, sounds to me like you're doing a great job keeping it all together.

Jack sounds like a wonderful little guy! Do his farts smell like lemon cookies too? ha!

10:29 AM  
Blogger Jen said...

I'm hoping with you--remember, doctors have been known to be wrong before. Jack sounds like a fabulous little boy, and so lucky to have such a loving family. Best of luck in the hours and days to come. You and your family remain in my thoughts and prayers.

10:50 AM  
Anonymous deborah said...

Nothing wrong with hope, Pazel. Nothing wrong with it at all. You're long overdue a break.

I'll be right here, hoping with you.

10:54 AM  
Blogger Dee said...

Sitting nearby, holding your hand and hoping with you. No harm in a little hope, is there? No sirree. Thinking of the four of you....

11:10 AM  
Anonymous Jessie said...

That moved me to tears. Not to mention, moved me to post.

Jack sounds amazing and you are an amazing momma bear, doing just as you should.

11:10 AM  
Anonymous Menita said...

Holding on to hope here, too.
Lemon cookies, huh? That is one sweet kid : )

12:29 PM  
Anonymous j said...

I only started reading your blog last week, directed from Julie's. I'm sorry you are going through this, and I hope that you get better news soon. I have twin girls who were born 9 weeks early, and spent 5 and 6 weeks in the NICU. I also have a son, who was about 2.5 when they were born. My girls were not really sick, just quite premature, so obviously my situation is different than yours. But I do know what it is like to have a child at home, and babies in the hospital, and how difficult that can be. I also had had a very difficult pregnancy, and spend a week in the hospital before the babies were born, and another 4 days after they were born. One piece of advice I got at the time was that, as important as it was to spend time with the babies in the hospital, that some of the time I spent there was for me, and not so much for them. And they would not really remember that extra time. But my son at home missed me, and did understand that I was gone, and would remember, at least in the short term. So I should make him a priority, when I could. And as hard as it was to tear myself away from the babies sometimes, to try and make special time for him, and to try to keep things as normal as I could for him. It sounds like you are doing great in that regard, and I'm not really giving you advice. Just commiserating with how hard it is, and telling you I think you are doing great. Jack is a sweet boy, and I hope that all goes well for him. It sounds as if he is getting the best care possible, and all the love in the world. With all of that going for him, he is going to be okay.

12:54 PM  
Anonymous Anonymous said...

Thinking about you, Pazel, and your family. I hope all goes well--better than well.

Karen/naked ovary

1:33 PM  
Anonymous libby said...

Thinking of you and Jack and hoping for the best possible outcome. Thank you so much for continuing to share your story at this most stressful time. Been reading you for a long time now and am grateful for your generosity. Jack is beautiful; I love the "Solidarity" pose.

2:49 PM  
Anonymous Julianna said...

Hoping and wishing great things for you and your family. I cannot imagine what you are going through. Know that complete strangers are praying for you and your sweet, sweet baby.

3:14 PM  
Blogger The Lioness said...

Not foolish at all, Pazel, simply natural. I hope for the same thing.

3:30 PM  
Blogger Jen P said...

Pazel, I too hold hope that all will be well with Jack. Maybe it is foolish, but it's what you've got at the moment.

Jack sounds like a wonderful wee boy and he's a fighter.

Thinking of you Pazel. Holding onto hope.

3:38 PM  
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