Wednesday, May 25, 2005

Another adventure of the bad mother

What a day.

Yesterday I learned to always have a kit with me to change his bag. I brought him to his cardiologist appointment at the hospital, but of course he had a leak on the way there. This is when the seal from the pouch to the skin leaks, so watery stool gets all over his clothes - and mine because I discovered it after breastfeeding him. I did not have any supplies, just a very regular normal diaper bag. I didn't know what to do.

So I tried to find the ostomy clinic - but there isn't one or at least it's only on certain days. There's no staffed area where I can pick up supplies. So I went back up to the NICU, as much as I didn't want to go back there, I knew they had supplies. Of all the people manning the receptionist desk, it happened that it wasn't anyone that I knew. Lunch break. Damn.

"Hi. Ummmm. My son was just discharged two weeks ago. We're here for a cardiology appointment downstairs."

Dumbstruck look. So I continue on...

"Anyway, he has a leak in his colostomy bag and I uhhh don't have any supplies and I was hoping maybe I could get a bag from here to tide us over through the appointment until we get home."

She said it was no problem and went off to get supplies. She came back with everything except stoma paste which is a crucial ingredient. She can't get me any of that because it comes from the pharmacy.


"Thank you!"

Should I leave him as is or change it without the paste which would mean his skin would not be protected and I would have to take it all off and do it again when I got home? I imagined the cardiologist putting the stethescope on his chest while the poop was leaking out and the smell filled the room and decided that I couldn't let it be. I didn't want the cardiologist to be disgusted or to know I'm a bad mother. It's bad enough the NICU now knows. Yep, all this due to my own vanity.

So then I went to the nearest public restroom with a changing station, which happened to be right outside the Cafeteria, or in other words had lots of traffic. Yep, my worst nightmare - changing his pouch in a public area. That the whole stroller/carseat combo took up tons of space in the tiny sink area and that Jack was screaming through the whole thing only added to my stress.

As I was doing it, I tried to focus and not look up at the steady stream of women. Cut out the circle in the pouch for the opening (cut to fit - harder without my template), remove old pouch, clean up mess, dry off, put on no-sting protector, curse myself for not having stoma paste, then apply new pouch. A change of clothes, new diaper, throw everything away, wash my hands and we're ready to go. Finally.

We then went off to the cardiologist appointment. The reason we weren't late was because I had driven straight from my weight watcher's meeting to the hospital assuming the extra time would be for getting a little lunch. So I didn't get any lunch, but at least he wouldn't be stinky. And not so much to track for my lunch points.

In the cardiologist's office I couldn't help but look around at the other kids there. You know that they're in there because they have some sort of heart problem. They all look fine, but you just know. They all look like regular kids. I held Jack and hoped that we wouldn't be coming back here after he's a year old. That is only a temporary thing that he will grow out of. That he will be a normal kid. Just a regular, active, pooping-out-his-butt normal kid.

In the back they first gave Jack an EKG which involved me stripping him down then putting the leads on his chest. He hates being naked, he's extremely tired, plus he just endured a bag change so he was very upset. The nurse told me that I could give him a pacifier to help calm him. When I don't go reaching for the diaper bag, she repeats herself. I don't have one. She looks at me to see if I'm kidding. I looked already, I don't have one with me. (I had looked during the whole bag change incident.) Big sigh and then she opens a drawer and takes one out for him. Thank you, says the bad mother yet again.

The EKG came out fine and we met with the cardiologist. I like him. He looks like a cardiologist to me. He is very healthy looking, trim, wearing running shoes, and a very calm demeanor. You could tell he takes good care of his own heart. I told him how hard it is to do the meds every 6 hours. I can't imagine doing it for another 9 months. We would, but it's hard. You always have to have one eye on the clock. Jack also hates the taste of the medicine so if he's asleep when you give it to him he will wake up. So we're going to try moving the beta blocker to every 8 hours, but to do this Jack will wear the halter monitor to see if he's having any mini incidents that we're not catching with our stethescope checks. Going to 8 hours will increase the chance of him having incidents so it will also mean that we (I) will have to check his heart more often. There's always a trade-off. And I never know if I'm making the right choices.

So we had the halter monitor put on which involves attaching more leads to his chest, and the wires are attached to a computer the size of a deck of cards. This computer will record his heart's activity for 24 hours, then I will take it off and mail it back to the hospital.

So I had two goals yesterday, a weight watchers meeting and cardiology appointment. We left the house at 9:30 and with the driving, the bag incident, and a trip to the hospital pharmacy for a refill, we didn't get back until 4pm. And we were both exhausted. Having a newborn means everything is ten times harder. It's harder to go out. Before we go I will feed him, change him, pack his diaper bag (better next time), then get him in his seat. Yesterday I even drew and packed his meds since we would be out during that time. While out, I'm traveling with not just the baby but also the stroller, diaper bag, and car seat. I've got to be mindful of when he ate last, when he was changed last, when it's time for his medicine. I've got to find private areas (if possible) to feed him and spend too much of my time carrying him with one arm while pushing the stroller full of stuff with the other. The whole thing makes it so hard to just go out. It's easier to stay in.

And that is my plan for today. Maybe we'll go for a walk. Maybe. I'd like to, but there would be so much to do to get ready that I'm not sure I will. Terrible, huh?

My important lessons from yesterday were to:
1 - always have a bag change kit in the diaper bag
2 - always have a pacifier or two in the diaper bag
3 - always have a spare shirt for me in the car or diaper bag. Although Jack was cleaned and freshened up for the cardiologist appointment, I still had spots of stool on my shirt.

Someday, when all this is history, I will look back on days like this and laugh. At least I hope so.


Blogger Ninotchka said...

Whew! What a day. I'm glad you're laying low today. Here's to more of those!

11:54 AM  
Blogger G Dawney said...

Please. Please. Please.

Do not think of yourself as a bad mother. Change that label in your head to "inexperienced".

You are certainly NOT a bad mother. You have shown extreme courage and strength throughout this entire process! You have held up under circumstance after circumstance, and you are still going. In my mind, you are the Energizer Bunny.

If you don't like "inexperienced" try unaccustomed, unfledged or my favorite: unpracticed.

You are doing GREAT!!

12:38 PM  
Blogger obabe said...

You will definitely look back and laugh one day. I'm impressed with how you got through that very long and tiring day, myself. Thinking about it makes my head hurt! Hoping you have lots of good days ahead, with some nice peaceful walks and no poop ;)

2:17 PM  
Blogger obabe said...

You will definitely look back and laugh one day. I'm impressed with how you got through that very long and tiring day, myself. Thinking about it makes my head hurt! Hoping you have lots of good days ahead, with some nice peaceful walks and no poop ;)

2:17 PM  
Anonymous gray girl said...

You're doing a remarkable job of juggling it all. You will look back and laugh someday.

I was wondering, if it's not prying: do you go to the children's hospital in the East Bay? My husband is a pediatric cardiologist (specializing in rhythm issues), and he did some training at Stanford and UCSF last year before we moved on to the great northwest. I was just wondering if he would have crossed paths with some of the folks caring for Jack. Small world!

3:05 PM  
Anonymous Anonymous said...

You're amazing! I can't believe you had the energy to write all of that made me tired just reading it. I'm a bad diaper bag packer, too...that's on the days that I remember to take it with me. I'm so glad to hear that you have your little man at home now and that he is doing better.
Take care of yourself!


7:00 PM  
Anonymous Anonymous said...

I'm exhausted just reading about your day. I think you are doing an amazing job. Plus you swallowed your pride and went to the NICU to ask for help. A bad mother wouldn't have learned anything from today, and you learned lots. I'm happy for you both. Jill

8:22 PM  
Anonymous Melissa said...

Delurking to say that my daughter is type 1 diabetic, and I too learned the hard way about leaving without extras.

You're doing a great job.

Take care..

7:19 AM  
Anonymous Mandy said...

You're doing a great job. You've got so many things to remember and you're doing so well....don't let anyone make you feel like a bad mother. That includes you.

As for that nurse sighing over a pacifier - wonder what she would have thought of me when Emily was about a week old and I was at the dr because I was still so swollen. The nurse asked me if I wanted to give her a pacifier. WE DIDN'T OWN ONE!!! I'd heard about nipple confusion, etc and up to that point was so afraid of it (esp with the whole "she lost too much weight thing) that I wasn't giving her a pacifier. Her choices were me or scream.

Any mom can forget any one of the things needed in the diaper bag. Now you know and you know you're not going to forget this, so it won't be happening again.

I promise..he won't remember it either.

8:39 AM  
Blogger The Lioness said...

You are definitely NOT a bad mother, you're learning the ropes and overwhelmed, parents make mistakes and forget things all the time.

He's home, he's better, he will be even better, he is being well taken care of by you - that's all that matters really. Don't be so hard on yourself.

8:44 AM  
Anonymous said...

You're not a bad mum. You're just getting used to what you have to do special for Jack that you didn't have to ever worry about with Janie. Give yourself some slack and be proud that you didn't have a complete meltdown. In fact, through this process you've been VERY strong. It sounds like today you ran into obstacles but you made it through pretty well! Good on ya!

1:56 PM  
Anonymous patricia said...

Geez, I hope so too, because it sounds HARD. The decisions alone are crazy making. But I am glad to hear everything is moving forward and that things are going relatively well with Jack.

2:51 PM  
Anonymous Anonymous said...

I have left the house without the following in the diaper bag:

a. wipes
b. diapers

You're doing great - you had two goals and you accomplished both. That's better than most of my days.


9:24 PM  
Anonymous Julia said...

Memories came flooding back as I was reading this...

I think you handled everything exceptionally well. Better than I would have. Every Monday from birth to 8 months old for my youngest, I had to go to children's hospital and get my kids' BP checked, it was exhausting lugging everything I needed, two kids, stroller, parking decks, etc., and to top it off I had to breastfed her with a nurse, a doctor (one not used to breasts hanging out) and usually an intern or FOUR in the room, while taking her BP several times and trying to keep my then 3 year old from literly climbing on furniture. Often times I cried on the way to the parking lot.

I'm telling you this because there is just always something. And it does get easier. When we have days of testing, I'm more prepared. And you will be too. Sadly, you'll be a pro at manuvering the process of it all. Really, you will.

Hang in there!

10:11 PM  
Anonymous Robert Carnegie said...

How is any doctor not going to be accustomed to encountering poop? Also breasts, et cetera, functioning normally. Don't they all do all of that stuff like in "Scrubs" - uh-oh, maybe you shouldn't think about "Scrubs" and how doctors are made...

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