Wednesday, November 16, 2005

Sorry I've been MIA

Time... I just don't seem to have any.

I'm so sorry I've left you all hanging. First there was Katrina, and then the semester restarted, and work got crazy crazy. Here it is, midnight, and I've still got tons of things to do before I sleep. Part of this may have to be typed one-handed in case my little wonder needs a drink.

Next to me is Jack. My little love. He sees his cardiologist tomorrow and I will be asking him for help. Back in July the surgeon said that we'd set a November surgery date (to take out his colostomy and bad intestine and hook his good intestine up to his butt to poop like a regular baby). Then we saw him in October and he told us that we needed to wait until January, maybe February, whenever RSV season is over. Of course we could do it now, but Jack will most likely get RSV while in the hospital post-surgery and end up on a ventilator. Our choice. Gee, let me think about it. So, I had saved everything I had to get to that October appointment, planning on a November surgery date to get our lives back to some sort of normal. And now they're saying January, February if we're lucky, maybe not until March!

Meanwhile, lately his stoma has been prolapsing, which means sometimes sticking out as far as 3 inches. Hold you fingers that far apart and imagine your baby's intestine sticking out that far inside out and you'll know why I've been a mess lately. Again, I was fine. Lasting to November, taking care of his colostomy and heart meds. But then when I think I've got it together, it prolapses, and nothing could look so wrong. I've asked several times different doctors and nurses and "as long as it's red and puffy it's fine, but go straight to the emergency room if it turns blue or black." Oh, I'd do that for sure.

After talking to the pediatrician, my plan is as such. We're going to try to get Jack approved for the RSV vaccine because of his heart. Then we can get him his surgery without so much danger from RSV. So tomorrow I need to make the pitch when we see the cardiologist. Cross your fingers and all that.

The thing is, I'm not sure I'm making the right decision. It's all about me and for me, or at least it feels like it. Besides screaming through the bag changes, or trying to rip the bag off whenever getting his diaper changed (and lately through his clothes), Jack doesn't care about any of it. He doesn't seem to notice at all. Once he gets his plumbing fixed, he will get severe diaper rash as all such babies do. His poop is still completely liquid, which is not right. Life is not going to get easier once the surgery is done. I want so bad for everything to just be right, but really it won't be. Sure, I won't have to see my son's colon anymore and he'll be able to wear pants, but at what cost?

My pediatrician talks so confidantly about how to care for Jack and so on. I love him. Did I mention that he looks like Daffney's lawyer ex-fiance on Frasier? Sorry, obscure reference. Anyway, I asked him if he'd had another patient with Hirschsprung's before. "Oh yes." Really. How many? He thought awhile, then answered, "One." In his whole career.

So I asked the pediatric surgeon, "Do you do these surgeries a lot?" "Yes. A lot." "So, what is a lot? Daily? Weekly?" "About 2-3 a year." Great.

Gotta love those obscure birth defects.

So I'd ask someone else what I should do and how they survived, but I don't know anyone else who has dealt with this. I'd want to know how bad the diaper rash is. Or if the poop got solid. Or if the prolapsing bothered them. And how they kept it all together.

Jack had a developmental assessment and loved it. The doctors played with him and he showed off, scoring normal or above normal on everything except speech. He's a man of few words. I think the concern was whether he would be at where he should be because of his time in the NICU and whether he was getting enough tummy time. Yep. He can roll easily back and forth, and does a sort of rolling action to get to what he wants. He can sit for awhile and loves to stand. He did great with the different toys, and seems to prefer his left hand, although it's still pretty early for that to be set. He doesn't need to go back for another 6 months, so he must have impressed that he's doing well despite all.

As for looks, he looks just like his father, same smile, same face, same head, same shaped eyes. Jack is growing faint brown hair like mine, with none of Matt's curl. And his eyes are a medium blue - a color all his own since Matt's are brown, mine are hazel, and Janie's are light blue. As for build, he's very lanky. My long green bean. I think he's on the 25th %-tile for weight and 90+ %-tile for height. It's that whole digestion thing. And he's not that fond of food. Unless you're talking about late night breast feeding, in which case he's totally on board. During the night he feeds almost hourly still. Really. At 7 months. I don't get solid sleep and haven't since he was born. This is where he takes advantage of me, and I let him. I suppose I can not feed him, but they are good feedings and he's kind of skinny so I do it. He doesn't breast feed so much during the day. He eats, but not a huge amount. He's just not that much into it. I have to really sell it to him.

And he still sleeps with me, although you could have guessed that from the feeding part. During the day he naps in his crib. Janie was in her crib for nights by 3 months. Different kids, different needs. Or is it that I'm just softer as I've gotten older and he's got me curled around his finger?

Meanwhile, Janie turned 5. We had a great party with my mother showing up as the evil queen from Snow White, my sister as Snow White, my other sister as Cinderella, and her boyfriend as Prince Charming. My cousin overheard some mothers sniping behind my back about how I'd hired all these characters. Nope, we're related. But I'll take that as a complement, since I would have been just as snarky.

So much to catch up on...
... Still haven't written thank you cards for all of the baby gifts. oh my god.
... Have a cavity and no way to get to the dentist. Jack would never sit through it. And I use my husband's aunt to watch him for my classes. And the dentist is closed in the evenings, on the weekends, and Fridays. Bah! Goes with my spa gift certificate I got at my shower that I haven't had time to use. It expires at a year, and that will be here soon enough.
... Mammogram has been put off until 2 months after I'm done breastfeeding. Tech asked if I'd be done soon. Not sure. Probably done whenever he wants to be done or he grows teeth. It's that pesky lumpectomy thing I had 2 years ago January.
... Saw nephrologist again who found some sort of strange protein things going on in my urine. She wants to test me for lupus but is putting it off until after Jack's surgery, because I have enough to deal with already. So I just try not to think about it. Um, okay.
... Lost 55 lbs so far since day before his birth. 30 was pretty easy, as it consisted of my 9 lb 5 oz baby and his ecoutrements. The other 25 has been weight watchers and breast feeding (and not sleeping much).
... Had first phone interview for job and found out that working from home can be considered by others as same as not working. Plus she asked if I had kids and their ages because of the ability to relocate (or ask illegal interview questions). When I said I have a 7 month old I got the old "Ooohhh." and not in a good way. Wonder if I should submit proof of my tubal ligation? And if they think a baby at home will make me less of a candidate, good thing his health didn't come up. I didn't need any more strikes.

It's almost 1 and I'm starting to run down. I feel bad that I was away for so long and that you worried. I'm okay and Jack's okay. We're all okay. I complain a lot to you, but that's because I don't with anyone else. I don't want anyone else to know. I want them to like him for who he is. I don't want him to see any sad faces. So I don't say and no one knows. Except you. You know all and love him still. Guess that blows my whole theory.

Thank you.

14 Comments:

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1:07 AM  
Blogger Julie said...

So glad to hear from you and the goings-on in your life! Was worried. Jack sounds like he is a fine young man, growing well, and quite charming, too. :) You sound like you could be stressed beyond belief, but are holding it together, and for that I am glad. Get thee to that spa, woman!

4:15 AM  
Blogger Dee said...

So glad to hear your voice, Pazel. How I missed you and hoped all was well.

It sounds like Jack is doing great. I hope everything works out with getting him vaccinated for RSV and the surgery scheduled.

Congrats on the weight loss too! I need to get on the ball with that myself but had a bunch of medical issues going on with me that prevented that. Things seem to be improving on that front though there are still some issues to resolve so we'll see.

As for you, I agree with Julie--time to use that spa gift certificate! You've got alot on your plate (and I'm sure that's an understatement) so some down time is probably well deserved.

Jack sounds like he's a handsome fella and Janie's birthday party a wonderful time. I hope I'm half as creative as you when it comes to that kind of thing in my own future.

If there's anything I can ever do to help, please let me know (yeah, I know, I'm on the opposite end of the country but still...). You've been there through thick and thin for what I went through and never wavered in your support and friendship. That's always meant the world to me.

P.S. You also might want to consider adding word verification to your blog (I think it was on the dashboard page or one of those) to eliminate the comment spam. There's been a rash of that lately, especially for those of us with blogger accounts, so a lot of gals have added it (me included). I see you got spammed by anonymous so it's something to think about maybe adding.

5:32 AM  
Anonymous TracyB said...

Glad you are back, and to hear about your life. Glad Jack is doing well also. Get your butt to that spa soon!!!

10:11 AM  
Blogger Jen said...

So glad you're back and surviving despite quite a lot to juggle. Good luck with the RSV vax - sounds totally logical to me but I know insurance companies all too well for that!

2:05 PM  
Blogger Anna said...

I'm so glad you're back and keeping us up to have on your oh-so-busy life. I have no idea how you do it all, but you've certainly earned respect from me!

I hope all goes well with the vaccination and Jack's surgery - I know you'll keep us posted when you can.

I'm glad to hear you've lost weight, but hope you can get to see that dentist and nephrologist soon. And the inside of a spa! Be good to yourself - you really deserve it. Hang in there, and feel free to vent here. Thank goodness for Bloglandia.

3:15 PM  
Anonymous Genie said...

I'm a lurker who is just so incredibly glad to hear from you again. There is much I could say, and wish I could put into words, but instead I send my quiet encouragement and the tiniest tidbit of information on the smallest of issues from your post: Since you are (I think) in California, you should know that state law prohibits the selling of a gift certificate with an expiration date...and all California businesses know this, although they still try to get away with it! So, politely inform them that you will use the certificate when it pleases you and not before, and if you need the statute language, feel free to email me. Be well, Genie (ebaumann@hbblaw.com)

4:23 PM  
Anonymous Kris said...

So glad you are back.

6:20 PM  
Anonymous rose said...

So glad to hear from you again and relieved to know that everyone is well. I can't believe how busy you must be! Lots of luck with Jack's surgery, whenever you decide is the right time.

7:47 PM  
Blogger R said...

Hey Pazel,
Thanks for the update.

Regarding all of your questions...I've started a support group... http://health.groups.yahoo.com/group/ostomystars/?yguid=235568463

We deal with all sorts of things...like questions about the diaper rash, etc...

It WILL get better, and soon you won't have to deal with the bag any more!

R

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5:43 PM  
Blogger April said...

So glad to see you're back. I've been thinking about you often.

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