Wednesday, August 24, 2005


Since I last posted I had flown to AZ for work and then back home again. In my absence, Matt and my mother handled Jack and Janie. And on the drive from the airport, Matt couldn't stop talking about how much they missed me.

My little cutie pie went from waking every two hours to crying from 12-2. "What is this formula crap? Why should I listen to you people? Don't you know who I am? I'm baby dammit! Where is my boobie? What have you done with the brown haired woman? Give in to my demands or no one sleeps!"

He's sleeping now, tired from the trip to the cardiologist's office. Just regular appointment for an EKG and to increase his dosages. I asked the same thing I always do. "Sooo, do you think his SVTs has anything to do with the Hirschsprungs or the time in the hospital or the deep line or sepsis?" Nope. Just a coincidence.

This trip to Phoenix was very difficult. I didn't feel emancipated with the opportunity to sleep. Instead it felt like only a shell of me was gone. I really did leave my heart in San Francisco. All I wanted was to be with my baby. Instead of feeling vindicated that he had cried and ran them ragged, I wanted desperately to console him.

Next week school starts and I will change to part time. I should be excited. Truthfully, I feel guilty. Matt says I shouldn't. People change jobs all the time without a second thought to their employer or peers. I know my boss would put her family first. Yet, yet... I do have guilt. I met with my boss yesterday. She asked me what we needed to do to get my workload down to parttime. She emphasized that they wanted me to work part time so that I could graduate on time and move back. "You are moving back, right?" What can I say? Should I tell them that I'd much rather go to a mid-size town in the Pacific Northwest where I could get a much higher position at a smaller hospital? That AZ is on the list as a safety only? A just-in-case? No, I can't tell her that. I need this job to last 10 more months, and at part time. Why would they keep me on part time working from home in another state if they knew I was leaving? So I was evasive, and somewhat misleading, while my true side tried to give hints. And I feel bad about it. I can say I'm doing it for my family, but I wish I could just tell her. I just don't see the possibility of getting a similar situation to this one, which I need while Jack is a baby and I'm in school.

Sometimes I doubt if what I'm doing isn't a great mistake. I've tried to continue my career while being home with my babies and while going to grad school. The cost has been much higher than I expected. And everything is done only part way, never great. Will I always have doubts? Will I ever discover the optimum answer?

Friday, August 19, 2005

Princess Time

Disneyland was fabulous. I won't bore you with the details, just a few things I promise:

  • Janie wore her sleeping beauty costume all day.
  • 4 different Japanese tourists at different times asked to take their picture with her. She told me later it was because they thought she was the real sleeping beauty. I figure she could have a great career in Japan.
  • The goal of the day was to get the autographs of all the princesses. Janie would say things like "We're not going on any more rides until I find Belle" which would stress me out. Thankfully I'm a pro stalker and while it was tricky, together we did corner every one.
  • Some mothers go too far in getting princess autographs, such as put their kid in line for one while taking off with the kid's autograph book to get another. Look lady, the person signing is only an actress, not the real character (which is a cartoon by the way), and the autograph is only as valuable as the experience you child gets in meeting the character. If it were only about filling the book, then just hide in the bathroom and sign all the characters' names to all the pages yourself.
  • I looked like one of those mothers at one point. Janie was riding a ride with my friend from AZ (who we met up with that afternoon) while I stood in line for Ariel. She was the last princess we needed, and it was only 10 minutes until she stopped signing for the day. I looked a little funny standing in line to meet and greet the mermaid, holding the autograph book and pen, without my little girl accessory. All the sane mothers gave me sad looks and sighs while they shook their heads over thoughts of what kind of grown woman collects princess autographs. Thank goodness she finished up the teacup ride and got there before I got to the front of the line.
  • My arms nearly fell off that night trying to carry Janie from It's a Small World to our hotel room. I could carry the little princess short distances before putting her down and having the literal sleeping beauty take a few steps on her own. She would then either drag her feet or walk so slowly that we were nearly standing still, too exhausted and falling asleep while walking. Then I realized what else makes daddies great on such days.

Speaking of daddies, after our first night away, Matt called and told me "We really need to do something about Jack's sleeping habits. He woke every 2 hours! ALL night. I didn't get Any sleep. I'm exhausted. Stop laughing, this is Serious. We Have to do Something. This isn't right!"

Really? (insert evil snicker here)

Friday, August 12, 2005

I'm too excited to sleep

On a whim, from a flurry of last minute planning, from sheer happiness and excitement, Janie and I are going to Disneyland tomorrow! We're flying out tonight, doing the big D all day tomorrow, then flying back Sunday afternoon. Just Janie and I, and the pump of course. Matt is happily staying home to care for Jack - for 1 day and 2 nights, when I will be having a ball and/or sleeping soundly. And you can't wipe the smile from my face.

Next weekend I have a school function, and then I'll be going to Arizona for work. And the following weekend we're going on a family camping trip. What's with all this activity? It is the last minute flurry I have gotten together before school starts again and my weekends are for studying. Oh, and we'll be poorer then since I'll be working part time. Like the little grasshopper I am, time to hurry up and party and not worry about the winter.

And I need to spend time with Janie. Just her and I. She's been such a good sport about all the many dealings with Jack. She used to be our only, our center of attention. She lost that spotlight more than most and I want to let her know that it's good to be a big kid.

We told her last night so I'm sure that today at school she's broadcasting it to every child and teacher. "I'm going to Disneyland." in a 4-year old bragging way. I tried talking to her about being nice because the other kids don't get to go, but I know that she'll want to shout it and dance as she does it. It's more of a self-involved happiness than anything maleficent.

What she doesn't know is that she will be having breakfast with the princesses tomorrow morning. The Princesses. Oh boy.

I'm going to miss my baby terribly. Especially at night. Sure, I'll be sleeping, but I'll be reaching for him. I love him so.

Matt has big plans for movie day all day tomorrow while he's with Jack. He's gone out shopping to get himself lots of good food and drinks to really enjoy the weekend.

Oh, I got a crack up on my misspelling of the word winches. My husband would have loved to have used wenches instead. Especially ones that serve beer.

And thank you thank you regarding the note that my son may not need any extra water or anything. Anything I read tells me either nothing on the subject of post-surgery or says there will be dietary and dehydration considerations but doesn't say exactly what. I suppose that's because it differs by how much intestine is lost. There's also a percentage who will continue to have issues with 'accidents' and diaper rash is supposed to be an absolute nightmare. Oh, and toilet training will take longer. Such is the fun of Hirschsprungs.

Sometimes I think my life is about 75% poop. That's not to say that it's bad, just a focus on a subject that I usually wouldn't discuss. I guess Jack has demystified the poop. It is what it is. The ability to poop is an extremely important function. Without it, my son almost died. Now he has it in an unconventional manner. He poops out his side into a bag. Still unbelievable.

This morning as we were changing Jack, Janie asked about when she was a baby. When we told her she didn't have a bag, she was genuinely surprised. She asked, "Then how did I poop?" "You pooped out your butt." Another surprised look. "How come?" "Because you were just fine. Jack needs a little more help, but he'll be just fine too." Four year olds just figure that whatever is going on in their house must be going on all over. It is normal, no question. And I LOVE that.

Wednesday, August 10, 2005

Junior High Fears

Over the weekend we had a good old fashioned house moving. We moved Janie's playhouse from right outside the kitchen windown to the far end of the backyard, tucked under the lemon tree. This playhouse is huge and very heavy, so we've been debating how to move it for months now. Finally he took my advice, plus added his own spin. He tied ropes around the house which he hooked up to wenches tied to trees in the backyard. He then rolled the house on loose logs. He'd pull the rope through the wench, the house would roll, and I'd grab the logs as they rolled out the back and put them in the front. Janie sat on her chair on the porch of the playhouse, directing and riding. Jack sat in his swing in the shade with a fan pointed at him, missing only the fruity blended drink with umbrella.

On Sunday I planted two bougainvillea bushes in the backyard. I love these bushes as they are nearly indestructible and have such bright flowers. Their thorns really cut me up as I hooked them up to trellises, but I was very happy I got to play in the backyard. I wanted to get out there before school starts again and I'm too busy.

I'm looking forward to school starting again. This year it means going to start working part time instead of full time. Yay! It can't happen soon enough. It's not like school is easy, but it gives me a chance to get out and be around grown ups. I love my children, but breaks make me far more appreciative.

Today I've got to order more bags for Jack. We tried out one of the many varieties the ostomy nurse had given me and like the one with the spout. I didn't try the flange ones. They are adult or bigger kid size so just look too huge, plus they just look too foreign. I guess no ostomy bags will look natural, but these are just too different than what we're using and my tolerance level for these types of things is very low.

Sometimes my mind goes off, kind of James Joyce-ish, flowing all over the place. I have a few of his first ostomy bags saved and his doll with the stoma (part of the intestine that sticks out). These I will show him when he gets older. He's going to ask about those scars. I suppose its sort of like the sex talk in that you only explain things as far as they are able to understand them and want to know about them. By then I hope to have the wisdom to explain it to make it all sound very normal and fine. Just fine. No problem. Sure. Then I thought of him taking gym class in junior high school. Undressing, the other boys will ask about the scars. As long as Jack is fine with it, I'm sure he can convey that it's no big deal. Battle scars, very cool. But what if his gym teacher is an @sshole? That although I have given explicit instructions that my son must remain hydrated, that the mean guy with the whistle decides to exert his power and deny my son water. Toughen him up. No special treatment. Then what? I have to worry about my son falling over dehydrated? I have to run down there and give the guy hell? Or do I have to send my husband to talk to him man-to-man? How 50's is that? And I don't want my son to stick out or be different. He can do everything the same and any big deal we make over it will defeat that no-big-deal feeling we're trying to give him. Besides, how important will water be? I don't know. I don't have a clue. And I can't find anything to tell me. Will the Hirschprungs affect his life after this next operation? Will he have any heart problems after this year? Can he still be and do anything that he wants as he grows older? Or will this always be around haunting us?

He fell asleep in his swing. If I was a good mother, I'd take him out and put him down in his crib. But, I'm a mother who'd rather him sleep and who knows that taking him out will mean that he most likely will not fall back asleep. So I'll let him sleep where he is.

At night he's been sleeping in his crib and I've been sleeping in my own bed with my husband. Imagine that. He still wakes up every 2 hours to eat. I could work on fixing that by not feeding him every time, but no way. If he needs to eat, at this age and considering his circumstances he will eat. Perhaps that spoiling him just because of his condition, or perhaps it is just making sure he is getting all that he needs. I actually like laying him down in his crib. The nursery is really nice; the best room in the house. The walls are two blue colors, one for the ocean and one for the sky. There are boats, lighthouses, seagulls and sandcastles recurring throughout. And the crib, the one I got from craigslist for a steal, is really beautiful and sturdy. I go in there and I immediately breathe deeper and feel calmer. I lay him down and start up his fishes. He looks like an angel when he sleeps. When he wakes up, he usually starts crying right away. I'll go in and find him all red in the face with tears down his cheeks and puddled in his ears, and a hurt abandoned look. I smile and try to put off the vibe that he's overreacting. Hey, I was only gone a second, really. And you were asleep in this beautiful room. When I pick him up, he'll look around suddenly interested, but we don't stay long. It's off to another room to change him and empty his bag, then feed him. The endless cycle of eating and pooping and sleeping and waking. Sure, it will be nice once he starts talking and crawling, but I like how it is now. A baby. I have a little baby. And I wouldn't trade him for the world.

Tuesday, August 09, 2005

When I'm sixty-four...

I think about my life a lot differently now. I'm 34, so when Jack is my age I'll be 68. That's nearly 70, and pretty old. I want to help my children, spend time with them when they're parents. I suppose that is the true side of having children later in life. We don't get to be grandparents for as long as if we had had them earlier.

My mother had me when she was 22, and I am her second child. She's still very young, vibrant and energetic. She loves to run Janie to the beach or get down on the floor and play with her for hours.

For me to do the same for my grandchildren, I need to take care of myself now. I want to be a young 70. Maybe only look 50. Still exercising, travelling, reading, and playing. I don't want to be wearing grandma clothes and have that short curly white hair. I want to still be able to wear pony tails if I want, and drive something small and sporty.

And I want to live a long life. My paternal grandfather died at 94. He was still living on his own in his house. He had fallen into some glass and the hospital accidentally gave him a morphine overdose. My father didn't even sue or get that angry. Accidents do happen, he was very old, and a morphine overdoes is not a bad way to die.

My maternal grandmother is still alive at 90-something. Sort of. She has dementia so she has no clue who anyone is. The last time I saw her was 4 years ago. She didn't remember me or my mother, but kept asking for my older sister. And she thought her husband, who had died 20 years earlier, was still alive.

I don't want a long life without my mind. And I want my body too. Maybe not all that it is now, but a strong heart and ability to get around.

If I hadn't been infertile, my youngest child would now probably be 5 instead of a baby. That doesn't sound like a big difference, yet to me right now it seems to be. I guess that's because I assume he'll have his children at the same age I had mine, so it's always doubling the difference.

The benefits of having children now is that I'm in a much better place financially. To me this means security as I'm not so much into material things. And next year we plan on buying a house in a good place to raise children, hopefully with an acre to play on. That wouldn't have been possible before.

Also, because I keep figuring out how old I'll be when they're my age, I'm trying to live my life in a healthier way. More fiber. Less sugar. Now, for the exercise I've been putting off but that really makes me feel better.

Saturday, August 06, 2005

Very Quick Sleep Update

For the last 2 days and nights, I've been walking around a different person. I've learned that if I lay Jack down in his crib, he will fall asleep. Sometimes he needs his pacifier, and sometimes his Ocean Wonders fish thingy playing the ocean sound, but he doesn't cry. He goes to sleep. Usually closing his eyes before I make it out of his room. WOW!

He's still waking up every 2 hours at night, that hasn't changed. I'll get up and feed him for the first time. For the others I wake Matt and send him to get Jack and bring him back to me. Then I feed him and send Matt back to put Jack back in his crib. (Matt is starting to get an idea how often Jack wakes, and how important this sleep thing is, but he's not complaining at all.) And Jack doesn't cry when he's going to sleep, only when he's waking up. And I don't let him CIO yet, but feed him then put him back down. Later, when he's older, long after his surgery, we'll eventually get rid of that too.

It's progress and seems to me some sort of miracle except I don't want to use that word lightly. Everybody say "Yea!"

Thursday, August 04, 2005

You Can't Handle the Truth

This morning I had an appointment with Jack's pediatrician. I brought Jack along, but I knew it wasn't about him. The problem is that my boy doesn't like to eat or sleep. He still wakes every 1 1/2 to 2 hours during the night, has only 45-60 minute naps, and has only 5 minute feeds. Jack has gained a pound in 3 weeks, so he must be getting enough. Actually, he checked out just fine. Then the doctor turned his attention to me, and I had trouble keeping it together. You see, it was never about Jack, but was all about me all along.

It could be that Jack's temperament is just a little more active. Probably is. And maybe his heart meds could have a contributing factor. Maybe, but their main side effect is sleepiness as made most evident by the warning label stating that he not take that medicine and then drive or operate heavy machinery. Janie was such a contented and good baby, that I had all sorts of slack. She slept, she ate, she never cried. She was pleasant and happy in the morning and evening. I figured that I knew what I was doing. That I must be a good mother to have such a happy baby.

With Jack, I doubt and question everything I do. Although things may have worked fine with Janie, with Jack they don't. I have no slack. It's all new again. Like I don't have any experience being a mother. Everything I thought I knew is gone. My tricks don't work. If he could, he would laugh at my attempts.

So, based on the doctor's strong recommendation and what I always knew I had to do but just couldn't do it, tonight he will be moved out of my bed and into his own room. "He does have a room, right?" asked the pediatrician. "Oh, yes. A beautiful nursery. Of course he just hasn't spent much time in there." Not yet anyway. But, tonight he will sleep in there for the whole night.

The question now lingers over the bed in there. Jack will sleep in his crib. Will I sleep in the bed in his room or in my own room? My friend laughed at this question. "Pazel, the idea was not to move him just for you to follow. But to move him and separate you two so that he can learn to sleep and you don't jump up at his every sound." I know, I know. I get it. But dragging myself down the hall every 2 hours does not seem like the right way to get extra rest.

When Janie (see, the comparisons continue, poor little kid) transitioned from the bed to the crib, it was at 3 months, and it was easy. No fuss at all. And we did it because she was sleeping so well. We didn't institute CIO until she was 7 months and clearly didn't need a night feed anymore. Now with Jack at only 4 months, I could let him fuss and cry a little, but I can't imagine CIO, not even for 30 minutes. I just can't. He may be hungry. What about his heart? And I don't think I can stay away.

Over the weekend, I tried to sleep in the other room away from Jack, with Jack and Matt sleeping together. It lasted an hour. I couldn't take it. I knew he would be reaching for me, be wanting to cuddle and to nurse, and was upset that I wouldn't be there for him. I had gone away to get some rest, but it was impossible because of my own defeating thoughts.

Last night, I tried to work on my computer for a bit outside of the bedroom. Jack was sleeping in my bed. He woke up at one point crying and very upset. When I went to him, he wasn't hungry, he just wanted me to pat his back and know I was there. And I felt horrible for having not been there. I decided then that he didn't need to be transitioned until probably a month after his surgery. December. Maybe January. I could sacrafice my sleep for him. He'll only be a baby once.

But, you see, this is the problem. I coddle him. Sure he's only a 4 month old baby, but he doesn't know how to soothe himself or get himself back to sleep, and he should. And he needs this skill, and I need him to get that skill or I won't be getting any sleep. See, the rational mind tells me that this is the answer. Then the irrational heart refuses to hear it. She puts her hands over her ears, closes her eyes, and starts saying over and over "but he needs me. I know he needs me." And due to this stubbornness and guilt, I turn into a sleepless zombie with a cranky baby unable to enjoy his babyhood, having to make an appointment with his pediatrician to hear the obviousness of it all.

So okay, it has to get better. I have to try for both of us before I lose my mind. I need to sleep. Really. Really. What's the worst that could happen? No, really. What is the worst?

Tuesday, August 02, 2005


Today Janie fell off the jungle bars "into a starfish" or in other words falling flat down all spread out. Poor thing hurt her little hand so we went and bought some princess bandaids.
I had to ask, "If Princess Ariel had a cut, what kind of bandaid would she use?"
"Hmmmm. Janie and Jack bandaids."
Well, that makes sense.

I love kids for how they make me laugh. With Janie, she tells me all sorts of things. Like, she's going to grow up and marry Jack and we will all live in this house. And she will have 14 babies, all with stomas. 7 boys and 7 girls. And we will need a bigger van to fit all the car seats. And she, grandma, and I will all breastfeed them since we will need more boobies.

With Jack, I use him as my little puppet. I take his hand and mimic him scratching his front. "Yep, yep, yep."

Or I will sing the song from the hotel commercial but with Jack's new words.
"I've been everywhere man. I've been everywhere man.
I've been to the kitchen, bathroom, living room, dining room, backyard, bedroom.
I've been everywhere man. I've been everywhere man.
I've been to NICU, surgery, EKG, recovery, safeway, walgreens, Lowes and Berkeley.
I've been everywhere."

It's just fun little things to do with baby. He loves the attention, no matter what it is.

Today Jack slept for only 2 1-hour naps. I truly do not understand this baby's sleeping habits. Babies are supposed to sleep so much more. He also doesn't eat much. His feedings are quickly over. Maybe 5 or less minutes per breast. That's all he's interested in before he starts fighting, arching his back and getting mad. It's not gas, I burp him. I've been wondering if he's teething. It's very early, but he constantly has his fist in his mouth, knawing on it. Jamie was born with her bottom two teeth (called neonatal teeth), so he may be early but that may just be what it is.

I offered him a bottle of formula today because I've been worrying about my supply diminishing. I know it has because he doesn't eat much, so he's not keeping me in milk. I don't leak and I don't get engorged. Instead of drinking the bottle, he chewed on the nipple.

I'm watching him. I worry. I can't help it.

Monday, August 01, 2005


Friday night we had our first family portraits since Janie was a baby. I feel bad that we didn't take one in the last several years, but I was always busy with work, unhappy with my weight, or going through infertility. I just didn't feel like it. Now, I'm still unhappy with my weight and busy with work, but I'm very happy with this little family we've created. It was a long time in the making. Plus, after I lose more of the weight, this picture will serve to remind me how far I've come.

Preparing for the pictures took all day. I bought and ironed clothes, got my brows done (putting "Dr. Brows" in my appointment calendar at work just in case someone wondered where I went), got my hair done, and got Janie's hair done. That last bit seemed extravagent, but she needed a haircut and it was cheap. Besides, she loved that we both got our hair done together.

Jack refused to smile during our family pictures, and threw a fit during his pictures with his sister. Maybe it was the photographer being so close during his individual pictures, but he flirted and smiled. For those pictures, we had him half naked in a basket with netting hiding the diaper and bag. I didn't want his babyhood to go by without naked pictues, but I didn't want pictures of his bag either. The photographer was a champ and didn't ask questions, just smiled and goo-ed at him while he stared and smiled at her chest.

For the family pictures, the posing would start by having me sit down first. Then Jack would be put on my lap, Matt posed behind me, and Janie on my side. I felt like the center of my family; that I was surrounded by all we had created. It was not hard to smile. Who cares about the weight or my hair or our clothes. It was us, together, and happy. Finally. I don't know if there is a more complete than that.