Wednesday, May 18, 2005

Our first week

What a week. It seems like everyday there's been something. A home health nurse visit. A doctor's appointment. My sister's graduation picnic. The graduation brunch (which I hosted). Today is probably our first day without a commitment.

It's been so much better having him home. No more long drives or pumping or being away from Janie. And for Jack, no more needles or bright lights or changing nurses. I think he's starting to get to know us as more than mere visitors. How could he have known we were anything more than that before? We were just one of many, not that much different from the other nurses or visitors. He thought that the NICU was his home, the nurses were his family, and that life was lived in that pink metal crib, sleeping, getting vitals taken, and being poked with sharp objects.

Of course it's not all rainbows and lollypops. He eats about every 1 1/2 hours. He eats small meals more frequently which is probably better for his digestion, but wears me out. He's also a lot fussier than Janie was as a baby. She really rarely cried and was very easy to please. He gets upset during diaper changes or pouch changes I think because he hates being held down (that fear of being poked by needles again). He also cries when he's falling asleep, fighting it the whole time. And sometimes he just cries for no reason. I'm working on different ways to soothe him. He likes to be swaddled tight. And he likes it when I vacuum while wearing him in the sling. He also likes to go for stroller rides over bumpy roads. He tolerates the swing and thinks being held should always involve being fed.

I feel very protective of him. Yes, that's normal as a mother, but there's more. I'm very sensitive about his colostomy. It's kind of like when that customer service rep told me it was sad and I took it so hard. I want him to be treated like any other baby. It's hard because right now the family is just getting to know him. They want to see his stoma and I can see their fear or disgust. It's not disgust with him, but you can see his watery poop right through the bag. It's different than seeing it in a diaper.

Sometimes I think that I just can't wait for this baby part to be over. I love him as a baby and love babies, but when he gets older we won't have to deal with the pouches anymore or the heart meds or the many doctor appointments. It will be more to what we know. Easier. But, this is our last child and I don't want this part to end so soon. He has tiny feet and wears tiny clothes. I love his fuzzy head and the way his chin quivers when he cries. I can't give all that up.

I hear Mr. Demanding so I'd better go. More boobie time.


Blogger obabe said...

I'm sorry its been hard for you the first week. What youre feeling is pretty darn normal, ya know? Soon, maybe a few weeks, maybe a month, "this" will be normal to you- the pouch, the meds, etc. I hope Jack can have his pull- through surgery (if thats what you are doing) sooner rather than later to alleviate some of the stress in your lives. I'm so happy to hear he's doing well though and you're all at home together, though. I think about you often.

Please email me if you have any questions about HD.

orah at levkatz dot com

1:39 PM  
Anonymous Simone said...

I would love to see a picture of your fuzzy headed little darling! Any chance of that?
I can understand your protection of Jack & imagine even showing your closest family members his bag & stoma must be really, really hard. Even I can sense an overwhelming need to protect him, shield him for anything negative. It is such a tough start, I hope each day gets a little easier for you all.

6:29 PM  
Anonymous Anonymous said...

Every day I check the blog to see if you have posted, each day I am excited that you have not, meaning that you are at home, everything is fine, and you are adjusting to being a 4 person family instead of 3! Good for you!

It will get easier! All of this will be just a distant memory in the future. My children were just like yours, the first, a girl, was easy, then came the boy, and boy howdy! As you will soon come to know, boys are just different!

You and your lovely family are in my thoughts and prayers!

5:49 AM  
Blogger Dee said...

Sorry your first week was hard and the fact that there was so much going on couldn't have helped. But it sounds like things will settle down soon.

It sounds like you and Jack (and Janie) are getting used to one another and that's great news! You're a wonderful mom, protector, person, and milk machine--and my heroine too.

You're all in my thoughts :-)

6:25 AM  
Anonymous Heels said...

I have been checking up on y'all all week long. I'm so glad you're home and I hope you're into a good routine soon.

I can attest to the wonder and beauty of this product for the baby who likes swaddling:

Be well and know that people are thinking of you and your family.

6:53 AM  
Anonymous Menita said...

Just sending so much love, so much hope your way. I am so glad you are all home and together.
Your life right now sounds so exhausting - feedings every 1.5 hours - gadzoooks! And everything else on top of that...
I am thinking of you, so much!

12:41 PM  
Blogger Floyd said...

I can only begin to imagine how difficult this first week has been but I can also hear in your "voice" how nice it is to have Jack home.

I think you are super strong and a great mother to both Jack and Janie. Sending you all much love.

3:18 PM  
Anonymous Anonymous said...

I am so glad I found you! FINALLY, another mother with a baby with a cholostomy. Lucy is 3 months old and has one. I get defensive, too. When the people at the medical supply company asked what it was, I got upset and felt like they should know! And then some people say, "Oh, that's too bad, I'm so sorry." I hate that too! She is doing so great, though. I am SO happy to hear about your son. I am going to read more.

Perhaps we can exchange stories, tips, ideas on how to keep the pouch on? I have so many funny pouch stories! ;)

What kind do you use? We use Convatec. I am seriously considering starting a little support group for moms of Ostomy babies.

I am so glad you are here!

(don't mind the depressing last post...I have trouble with worry sometimes!)

9:44 AM  
Anonymous Anonymous said...

I know what you mean about the "how sad" comments. No one says "how sad" about eyeglasses. One time I was changing her ostomy in public and this lady said, "What is THAT?" Like it was the weirdest thing she'd seen. I wanted to deck her. :) I said it was an ostomy, and offered no furter explanation. She then said, "Oh, she'll be ok." As if I was thinking she wouldn't? People. :)

One thing that has been neat for me has been educating people about it. When they realize that these ostomies are life-saving, it's kinda cool.

On the bag changes - they get SO MUCH FASTER. The first night, when Lucy was 2 weeks, it took an hour and a half. Lucy was screaming. I was bawling. Scott had to be strong for us! ;) Now it only takes 10 minutes!


9:54 AM  
Anonymous Robert Carnegie - Scotland said...

I guess you know to use swaddling carefully? If Jack likes it still may not be good all of the time. On the internet you can look at baby advice from different countries and the difference is amazing, and a lot of it is tradition or best guess instead of scientific study. The worst is if a scientist just takes a guess and everyone figures a scientist always knows best.

That boy had better still be grateful when he grows up for what you've been going through now for him. I couldn't tell you what the best age is to tell him so; maybe don't traumatise him with guilt as a teenager (though a depressed teenager has to be easier to share a house with than a boisterous one) but wait until he starts to ask to borrow your car, or when he gets the idea that he should spend a year in Europe before college.

I feel for you wanting the bad thing to be over for him. You know that that will come in the future, which is a different place; your job for him right now is to care for him - and to enjoy him - right now, in the time where you are now - and to prepare him for the life he's going to have: like anyone else.

4:05 AM  
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