Wednesday, April 20, 2005

Day 11 - Some important milestones

Yesterday was a tough day. Jack was in pain most of the day. We couldn't touch him or he would cry. They didn't want to increase his morphine too much because they didn't want him to end up intubated (tube down his throat to help him breathe) and they also wanted his intestines to wake up and start working.

Then at 9 last night, he woke up. He looked around. He was the happiest I've seen him in a long time. I could touch him and we could even take his blood pressure without so much as a fuss. By 10pm I was holding him again, which only made me stay until after midnight because I had missed holding him so much.

When I got to the hospital this afternoon, I got to feed him. It was pedialyte and only a tiny, tiny bit. He's never really had a meal and hasn't tried to eat in 10 days, so it was very confusing to him. I think he hates the taste of pedialyte. He'd take only a suck or two then scrinch up his face to show us he hated it. Every three hours I'd try to get him to eat a little more, and he'd make faces or cry or fall asleep to avoid it. Tomorrow we should be able to start him on breast milk, which I hope he likes much better.

Tonight he also had his first stool into his colostomy bag. Our question had been what he could be pooping since he hasn't eaten in so long, but apparrently your body sloughs cells and such even when you're not eating. Learn something new every day. To me it looks like left over meconium. The bag over his stoma is clear and his first poop in it was pretty disgusting (looks like seaweed, sorry), but to us it was reason to celebrate. He needed to demonstrate that it worked and that the intestine we've kept is good so that we can get the green light to move on to food.

Tomorrow at noon we're going to a class on caring for the stoma and changing the bags and all that. It's held by the ostomy nurse who is very, very nice. She's already gave us papers to read, and so far it looks to be a very intensive procedure to change the bag. But, she promises what will take us 40 minutes now will one day soon take us only 20. Also, what surprised me was that the bag only needs to be changed every 3-5 days?? I figured it would be at every diaper change or at least once a day. There's so much I need to learn.

I am starting to feel a little better. I'm able to turn on the radio and listen to music without crying or finding it totally inappropriate. I even curled my hair today - a huge accomplishment. I've been looking like the train wreck I've felt like. Last night I even went to my class at Berkeley for 2 hours. The class applauded my return and asked me how I was feeling. I answered exhausted and many chuckled since they don't know about the NICU and figure I'm just tired from being up with baby. I wish.

One of the things I'm looking forward to is breastfeeding at night. I pump right before I go to bed. When I wake up in the morning, my breasts are so full that I could probably put out a fire accross the room without ever getting out of bed. Tired as I am, I have to get up and pump. With our daughter, she co-slept with us. During the night I'd feed her right there in our bed. Sometimes her and I would stay up and watch Letterman and Conan when she had the big eye (husband's term for wide awake). Because I fed her during the night, I never woke up super engorged like I do now.

Janie has been faring okay. The other day she broke down when a ladybug flew away off her hand. "The ladybug doesn't love me. She flew away from me. She doesn't want to play with me." It was obviously what she was feeling about this whole Jack situation and not the ladybug. Even today she got upset when I asked her to clean her room and told me that I don't love her because I make her clean her room. I only love Jack and Daddy. I had been trying to decide if her being upset was manipulation or real, but figured to treat it as real because of all that's going on. Later she told me that she was fibbing because she knows that I love her with all my heart and soul.

I guess that's the other thing I'm looking forward to. Getting Jack home so that Janie can spend time with him. I want to be able to hug them both at the same time. The two halves of my heart in one spot.

I can hear Matt snoring in the bedroom. I'm going to have to go in there and make him rollover so that I can sleep. He hates that. This week when I've gone to bed he will wake up and ask me how Jack's doing, since I have the night shift at the hospital. Tonight's report will be that he's doing good. Hates pedialyte, is pooping in his bag, and was sleeping well when I left. That should be good enough to get him to rollover and sleep well.


And to all of you who have been commenting - thank you! I read them every night and want to respond back to each of you but I've been too exhausted to do much else than write an update. The support has been so important to me and kind of boosts me up when I'm making my slow shuffle into bed. I have also really appreciated the advice of those who've been there either in the NICU or having special needs kids, or having had an illeostomy or child with HD or knowing someone with HD. I plan on looking into that online support group as soon as I'm human again. I think I aged at least 10 years last week. There was a moment in the hospital where I felt that I couldn't handle it and had reached my end. I actually imagined standing on the roof looking over the edge. Every time my heart beat it hurt. But then I thought of Janie and thought of Jack getting older and I knew that my only option was to deal with it. Pazel, deal with it. And as much as I thought I couldn't, I didn't have a choice. I had to. And taking all the bad news each day and watching him in pain or hungry or just laying there with the monitors took away all my thick layers of protection. I had to take everything moment by moment and forget everything else. I had (have) no idea what day it was, what the news was, or what the weather was. I didn't care so much about what I looked like or finding the right words, or other people's feelings or family conflicts, or my job or my school or the bills or a-n-y-t-h-i-n-g. I could drive through the city of Oakland at midnight and not be afraid - for my baby was sick and no one could hurt me more than that. I say all this but I'm not through it or past it or much better. Well maybe a tiny iota better because I feel like we're climbing back down from Everest and so we will eventually reach the ground again. I am starting to have hope again. I'm afraid. I've been burned. I thought we had it at his birth when I heard him cry for the first time. I think I probably cried more than he did. I'm so afraid of trusting and having him get sick again, I don't know when I'll relax. I don't know. I'm not there yet and I don't know when that will come.

And I've totally sidetracked my point which was to thank you for all of your kind words, and your hopes and prayers. Above all, I do still feel very lucky to have him. If there was a choice, of course I'd rather not have had problems so that we all could have avoided the pain. Yet, if it was to have him as he is or not have him at all, of course I would choose to keep him. I think if you met him, you'd fall in love with him and you'd do the same.


Blogger Jen P said...

Hooray for the poop!! Yeah Jack!!! Such good news that he'll get to try breastmilk again really soon and fingers crossed the bowel is working beautifully.

Pazel, you're an amazing woman, and though it doesn't feel like it right now, you're inspiring so many women.

Much love to you and the little ones.

2:01 AM  
Blogger The Lioness said...

Oh Pazel, these are wondeful news, fabulous news! I am so happy little Jack is feeling better and that his intestines are starting to do their job.

Comments can be sanity savers, they truly can, sometimes more so than anything said to us IRL. Don't worry abt thanking everyone individually, you and your family are the priority, keeping yorself in shape takes precedence over everything else. You are truly courageous.

5:46 AM  
Blogger Floyd said...

Hooray for Jack! So great to have some good news.

You're doing a phenomenal job. I can't even comprehend how tired you must be. Continue to hang in there and know that you are in our thoughts.

5:59 AM  
Anonymous Soper said...

I feel so stupid every day saying "I'm thinking of you," but really, that's the only thing I can say. We're all here rooting for you, and will help you however we can.

6:04 AM  
Anonymous terri c said...

Jack's a champion!!! and so is his Mom. So very happy to hear he is coming along. Pazel, please keep on keeping on, and let us know your feelings, the easy ones and the hard ones. We're here. You must know that what you're feeling, all of it, is completely normal--you're going through one of the hardest things in the world--and there's no way to make it easy. There's a web of folks the world over who are holding you in our thoughts.

6:15 AM  
Blogger Lala said...

Dear Pazel:
I wish I had more to say other than I've been thinking of you everyday and I admire you so much for coming to the computer every night to tell us what's happening. It sounds like all your feelings are normal, your burdens are unfathomable right now but I think you're handling yourself in the same way any of us would. You're stronger than you give yourself credit for.

6:28 AM  
Anonymous Anonymous said...

Pazel--lurker who had ileostomy again. It's been 10 years but it is something you don't forget! Just wanted to give you this advice for bag changing (and yes, it does get easier each time). You may want to go to a warehouse store (like Costco) and pick up a big ol' package of cheap white washcloths. You can use these to get Jack all clean around the stoma (and to catch anything that comes out during the changing) and then right afterward just throw 'em in the wash with hot water and bleach, and they will be totally clean and ready for use when you need them next!

Now that he will get to eat he's gonna be as healthy and happy as they come! Yay!!!

bec :D

6:30 AM  
Blogger Dee said...

Hooray for small milestones and poop! So glad to hear that Jack is doing better.

You're so incredibly strong, Pazel, in everything, not just during this latest curveball life has thrown you. And I think you know that deep in your heart, that's why you stepped back from the roof's edge and reclaimed yourself.

You inspire, truly you do. Please don't ever forget that.

Sending the four of you so much love :-)

6:33 AM  
Anonymous Anonymous said...

Jack is a winner! Like his mommy. All my love

6:46 AM  
Anonymous Anonymous said...

Pazel, there isn't anyone stronger than a mother, and you are a perfect example of that. No matter how hard it gets, you know you have to keep moving. I hated having a baby stay in the hospital, but knowing there is an end in sight does help get you through. And now you are seeing that light at the end!

So happy to hear the fabulous news. You and your family will continue to be in my prayers.

6:50 AM  
Blogger dish said...

I've been thinking of you and little Jack all the time- I am glad to hear that things are improving. Will keep you close to heart.

6:51 AM  
Anonymous amanda said...

Yay for milestones! Pazel, you are such an amazingly strong woman. So strong.

6:55 AM  
Anonymous j said...

So happy he pooped! I think you are all going to be absolutely okay. Sure, changing the bag will be intimidating at first, but I'm sure it will get easier. I think about the first time I heard that I would have to give myself a shot for an IVF cycle, and I cried and thought "I will never be able to do that. I can't stick a needle in myself." But I did. And I cried the first time I had to do it, and messed up mixing the meds, and it took forever, and it hurt. Then it got better, and then I could do it while talking on the phone and eating a peanutbutter sandwich. And then I did it for my friend, and did her IM shots for her. I'll bet changing the bag will be like that. You'll get really good at it, and it will become routine.

I can only imagine how awful these last 10 days or so have been. How your heart must have felt like it would just stop beating. But it sounds like you are through the worst part, and can get on with your lives soon.

Jack is going to have a great life. It sucks that he has this disease, but I think he'll be fine. My DH has Crohn's disease. He was ver sick for a long time, and then finally they removed a big part of his colon, as a last resort. He doesn't have a colostomy, and he lives a totally normal life. Has for 10 years. He wishes he'd had the surgery long before he did. He avoids alcohol, and certain types of foods, but other than that, he is just fine. Okay, he really stinks up the bathroom, and his farts really stink! But other than that, he is fine.

Best of luck to you all.

7:33 AM  
Blogger cat said...

What good news! Yah. Go Jack. You are a very strong and inspiring momma. Thank you for continuting to update us and share this all with your readers. I'm out here rooting for you and Jack and the whole family. Hope he eats well today and can come home soon.

7:36 AM  
Anonymous Julie said...

I'm so afraid of trusting and having him get sick again, I don't know when I'll relax. I don't know. I'm not there yet and I don't know when that will come.

It gets better, I swear. And I hope that's very soon.

9:18 AM  
Anonymous Menita said...

What great news, Pazel! So happy things are working as they should, that Jack of yours is a champ.
I am thinking of you and your sweet, strong family.

10:04 AM  
Anonymous Anonymous said...

I am so happy for you and your family!!!!

10:10 AM  
Blogger Amy said...

Our little famiy thinks of yours everyday. As a NICU mom myself, I know how heartbreaking it is to watch your child in pain and know you have to allow it to continue because it is the only thing that will keep them alive. The only way out of this is straight through - and it is the hardest thing you will ever do. There are so many out here who are supporting and loving you and your family. It is hard to see now, but it does get better. Celebrating the small stuff helps to get there. We are celebrating with you!
Amy and Jack

10:20 AM  
Anonymous Anonymous said...

A lurker jumping on here to let you know that I am thinking about you guys. Hope that your little man is feeling better and stronger everyday...
thank you for the updates, I check here for them quite frequently.

stay strong, mama!


11:29 AM  
Blogger HomeFireBlue said...

Oh this is fab news! I'm so relieved to hear that you and Jack are doing better. Y'all are so strong.

One minute, one hour, one day at a time ... Keep your chin up: it'll keep getting easier and easier.


11:47 AM  
Anonymous Julianna said...

Such fantastic news!

I think of you and your family every day. I'm so glad that you are able to update all of us.



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