Thursday, December 20, 2007

Lost bits

There have been so many times in the last couple weeks when I've thought of things I want to talk about or just throw out there for fun. I need to start carrying a little notebook around with me in order to jot them down. I could put them in my PDA/phone, but I'm not so good with the texting even if it is full keyboard. So here's a few semi-random things that I meant to give some time to... aren't you lucky you stopped by today??
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December 14, 2006, the day we brought Braska home from the hospital...finally. Then and now. I hope to try to recreate this pic every year. It's the first one after the day of her birth with she and I together.

We've come a LOOOOOOOOOONG way, baby....you and me both.
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I watched a show last week--I won't mention it or link it because I don't want to even accidentally be blamed for endorsing it--that I normally purposefully avoid even though it's watched in the other living room in our house. I watched it because it advertised having a DS character (this was not the ER episode), and I wanted to see how they dealt with it. I wasn't all that impressed with the actual storyline, but there was an exchange between two characters that I thought was interesting.
He said, "What would you do if you had a kid with too many chromosomes?"
She said, "How do we know that the rest of us aren't just missing a chromosome?"
(Might not be perfectly verbatim...didn't write it down right away.)
Interesting.
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Some things aren't funny. This is something I've been putting together in my mind for some time, and it'll have to wait for further elaboration. But it's important to me...humor is good, laughter is great, but some things just aren't funny and shouldn't be laughed off "just because"...family or not. I've seen so much of that kind of laughing do serious damage to whole lives.
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On Saturday, 12/15 we joined up with a couple small groups to do some caroling at a couple nursing homes here in town where members of our church reside. I haven't done this in many years, but it used to be part of our family Christmas tradition when I was younger. Granted, we are not actually part of either of these small groups from our church...we're kind of like the honorary small group members who don't actually attend small group. I wish that were different, but baby steps... Our friends are super enough to include us on social occasions so we jumped in. (My husband would say he was more dragged in, really. See his take on the night here.) It was fun to be with our buds again...we don't get together nearly enough anymore. And all the kids were at sitters, so we were fancyfree....well, as fancyfree as you can be on the churchbus visiting elderly and singing Christmas carols. But it was good. It snowed the whole time as we were in the middle of this past weekend's snow storm. It made for a nice setting.
A few pics of the evening...smiles on the bus. There were goodies and hot cocoa circulating to keep us happy and warm.
After we got done, we went back to the church to hang and eat more goodies. We borrowed Oasis, which is the teen auditorium area. It's pretty darn nifty, I say. Booths on the side, cafe area, with air hockey, video games, and such on the second level.


The girls gabbed as the guys played, for the most part. This is Jennifer S, me, and Karen K.

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Today was a pretty good day. I felt more like myself today, getting out, talking to people, interacting with adults. Here's how it went...
7am--Up, shower, get Braska up and fed, get us both dressed and ready.
7:45am--Leave the house!! Take Belle to the groomer.
8am--Use the time on the north side of town to run errands. Post office to get stamps, Target to return a gift, Wal-Mart to get things we need, gas station to fill up before weekend trip.
9:20am--Return to pick up Belle and head home.
9:30am--Check email, reply to work issues, finish a project.
10am--Freshen up and dress Braska for going out. (Previous outfit was for errands. Pathetic, I know.) Prepare diaper bag and collect Braska's stuff for feeding while we're out.
10:45am--Leave house heading for lunch meeting.
11:10am--Arrive early at the Olive Garden. Make a few phone calls in the car while I have a minute.
11:20am--Go in, get seated, etc. Have nice lunch w/good friend/work contact. Fed Braska while there. (I'm getting used to doing her tube feeding in public. I don't even notice if people look anymore.) Did some business, got caught up, and relaxed a bit over soup and salad.
12:50pm--Head to the mall (big deal, I NEVER go to the mall). Managed to get gifts for BIL#1 and #2. Found a clearance pair of boots at Payless, stood in line for Santa, got pics of Braska with the very nice St. Nick. (Soon to be posted on her site. Gimme a day or two.)
2:20pm--Arrive home, feeling like I actually got out, and loving it!
The rest of the day was a bit less eventful, but that's ok. I got out. I had adult conversation. Man, I miss that something fierce.
I didn't do a dish, clean a room, unload the dryer or any of the many other things I needed to do, but I still feel good about the day.
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While I was out today, getting gas, a guy came out of the convenience store with a brown paper bag, obviously holding one of the tall beer cans. (Yeah, I watch Intervention. That's how I know. Disturbing, yet very enlightening show. I've learned alot of helpful things that I've had a chance to use, but that's for another time.) He gets in his car, closes the door, fiddles around with some stuff, then opens the beer can in plain sight, downs quite a swig, then takes off. I don't like it. Not at all. He is putting my child at risk, and I don't care for it.
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Target is expensive. While I was there today, I thought I'd use my newly obtained store credit to get the things I had on my Wal-Mart list. So I went to check them out. Now I don't usually know what anything costs. If I need it, I just get it, so I can't tell you how much a pound of meat is or what my deoderant costs or anything like that. BUT I do know what diapers and Braska's liquid food costs. And wow, even the Target generic brand was 15 to 20% more than I pay at WM. All the items I looked at were a few dollars more expensive. I just couldn't do it. Even though it was "free money," I couldn't do it. I didn't think I'd become this person, but I guess I have. Looking at price tags. Guess it's about time. I don't know how all you Target shoppers do it.
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One last thing for now:If you're looking for more wit and sarcasm than the normal person can provide, check out M's blog. He's been posting again after a bit of a hiatus, and they're worth checking out. *Disclaimer (made with love):I cannot be held responsible for the content of that blog.*

Wednesday, December 12, 2007

Mommy life: Donation for Daria

Today I finished my Christmas shopping for all our "team" of people that keep Braska going and gorgeous! We donated to Daria, the Waiting Angel of the Month. We'll give cards to each of our team members telling them of their gift and how it will help this child.

It's hard for me to just give money and pray, but right now that's all I can do. And it's alot...nothing's more powerful than prayer. But sometimes I just want to get up, fly to wherever they are, and just spend time holding them, reading to them, and taking them to families who will love them. Lately I've been wishing I could just call someone up and say, "I'll take her!" and be done with it, but it doesn't work that way. Plus my husband would be less than happy with that decision...

I would like to set forth this small challenge.... can you spare $5? I think that most likely every person who reads this can. Will you consider sending that to Daria today? More is better, of course, but a bunch of us sending $5 would be huge for her. Five bucks....that's all. How long would it take you to whip out a debit or credit card and donate five bucks? If you're in Champaign-Urbana and this means you won't have money for lunch, you come on by, and I'll take care of feeding you!

Monday, December 10, 2007

Shop talk

Saturday I was at Wal-Mart shopping for a few items, more than one of which was in the baby section. I've always thought that when people are actually shopping in the baby section, they seem to slip into a friendlier mode, talking to others who are also in their world, discussing ages, genders, and latest milestones of their kids.

As I was standing in front of the shelves full of baby foods, cereals, and juices, there was a lady who came up from my right side. She was talking to the man a few steps behind her who was dutifully pushing the shopping cart piled high with their coats and scarves. There was no kid in sight. I should specify that she was talking LOUDLY. It was almost as if she was unabashedly inviting people to stop and listen to the earth-shattering things she had to say. As she walked up to where I was looking through the Graduates items for Lil' Crunchies, she stood about 12 inches from me and sighed very loudly. She said, apparently to the man, although she didn't direct it toward him, "I just WISH he would eat! What do you think we should try this time? Or do we just give in and let him eat the same two things." The man made no response, just followed as she passed behind me and then stopped on my left side. She continued, still sounding like she was trying to share this info with someone a few aisles over, "Nobody gets how frustrating this is! I wish we could go back to when he just took a bottle. "

Since I hadn't found what I wanted yet, I considered walking around the next aisle and waiting for them to finish and leave before returning to search some more. But that seemed silly. Before I realized I'd decided to say anything, I heard myself blurt out, "I know feeding can be stressful sometimes." "Well, WE are trying to get him to start taking some solids, and he only wants a few particular ones," she replied. "It's been like three weeks, and I don't know how long I can take this!" She had such a martyr's air to her, at least I think that's why I said, "Aw, that is hard. My daughter has a feeding tube." I surprised myself, let me tell you. She hesitated for just a second, and she said dismissively, "Well I guess I should be thankful, then. "

Thank goodness, I spied those evasive Lil' Crunchies, and grabbed them up. I said, "I'm sorry it's frustrating for you," smiled as sincerely as I could, and I walked away.

It got under my skin, and that surprised me. She had no way to know what feeding issues meant in our house, and I'm sure they are just as frustrated with their particular set of circumstances. There was just something about her more-distressed-than-thou air that was too much for me. It was almost like she wanted some kind of medal of courage for hanging in there, and if she did, I'm sorry she felt like she needed to look for it in a Wal-Mart aisle. I gotta say, that poor guy looked like he'd been hearing that song for a very long time.

Friday, December 7, 2007

Two hospitals in one day

Mommy and I went to St. Louis again yesterday for some more doctors and stuff. We left very early in the morning. This time, we went to a different place than where we usually go. We went there because they have a big place just for kids like me that are little but need glasses to see better. Mommy told me that when I get my glasses that I will see all kinds of things I don't get to see right now. I'm not sure how that works, and I don't like when they put the glasses on my face to try them on, so I don't know if I'm gonna like this thing of wearing glasses.

First we went to St. John's so we could pick out my glasses. Miss Mary helped us, and she was very nice. Mommy put some of them on my face, and they kind of make my nose feel funny. She decided which ones she liked, and I told her they were my favorite too. And guess what color?? Pink, of course! We will have to go back and get them in a couple of weeks. I sat like a big girl while Mommy was paying for everything. There was alot to look at in there!

While we were waiting to get done, Mommy asked Miss Mary about our new little friend Levi who was in that hospital, but he got moved. I'll tell you about him in a minute.

After we got done, we met Auntie Rachel for lunch since we were close to where her new job is. She works for a different hospital, but we thought two in one day was enough, so she came to meet us at the lunch place. I played with the shiny paper that the chips were on, and then I sat with Auntie Rach for a while and tried to grab her pizza. Mommy said I could eat some if I wanted, but I didn't...I just wanted to play.


We finished up with lunch real fast and went to our regular hospital called Children's. I met with another nice Miss Mary who talked to Mommy about how I eat. She said they were going to do something called a swallow study, but Miss Mary decided pretty fast that I didn't need to do that. I swallow just fine, thank you!

She watched while Mommy fed me some, but I didn't really want to eat. Then Miss Mary gave me a thing called a Crunchie. It was pretty fun to hold on to and after she put it on my mouth, it kind of tasted good too.


I even held it by myself, which made Mommy all surprised.


After we finished with Miss Mary, we had some extra time, which was very good. We went to find our new friend Levi. Mommy knows the story better.
I knew a guy in high school from church camp, Michael, and hadn't really thought about his family in probably 15 years. My parents have kind of kept up with them. Earlier this week, Michael's wife Carrie had a baby, Levi, who was born at less than 3 lbs. He has some major heart issues and will need multiple surgeries, but currently, they're working to get him to at least 5 lbs before they can consider operating. When Carrie was discharged from the hospital, they transferred Levi over to Children's. Since we were at both St. John's (where he was born) and Children's on the same day, I felt strongly I was there to make contact and offer a little encouragement, even if I hadn't seen them in so long.
I'd never met Carrie, but I waited in the NICU waiting area until she and both her mother and Michael's returned from grabbing lunch. It was nice to see Michael's mother again, and Carrie and her mother were both very sweet. I talked with them a little bit, just trying to encourage her. She told me the doctors had given them the possible scenario that he might not ever come home, and they asked her and Michael to consider the possibility of taking him home soon to simply spend what time he had as a family. How can that kind of a decision be made? How difficult that must be?!
So your prayers on Levi's behalf are appreciated. I'll be checking in on them again when we're back there soon if he's still inpatient.
After we checked on Levi, we went down to wait to see Dr. R. I spit up on my shirt, so Mommy just took it off. It was alot of mess. That's why I've got no shirt on. I thought it was pretty fun to play around like that. Mommy kept a blanket on me so I would be "proper."


When they put me on the silly scale, I was 15 lbs 0.8 oz. Finally made it to 15!! Mommy was happy about that. Then she put me in clean clothes and she was happy again. Dr. R thought I looked pretty good, and my button too. He said Mommy could start feeding me different. They talked about milk and something called Pediasure.

When we came out from seeing Dr. R, it was snowing! Mommy called Papa Beagle to see what the computer said about the weather, and we decided not to go home. Mommy doesn't like to drive in the dark and Papa said it was gonna be slippery too. So we decided to go to Grandma C's house for the night. We watched the Bears game with them and Grandpa J played with me by the neat tree they had in their big room. It had lots of lights!

Today we came home before it got slippery again. Our house got lots of snow! It was good that we didn't go home during the snow, because we saw a whole bunch of cars that slipped off the road during the night. But we made it safe!

Monday, December 3, 2007

The Raisin Bran Life

Just finished making dinner. Like with ingredients combined to create parts of a meal, all together making what most people might call "dinner" or "supper."

Here's the thing. I don't cook. Now, mind you, it's not that I *can't* cook, it's that I just simply don't. Why? Because I'm married to man who doesn't eat real food, and I have a daughter who also doesn't eat. And I got tired of cooking for one (me), usually after I had "cooked" for one (him) in the form of mac n' cheese or some such boxed item. SO...therefore, I don't cook.

I would be happy to live on Raisin Bran, even a generic. Yeah, that's how far I've fallen. When M is busy or it's just me and Braska, I practically do live on it. Throw in a Slim Fast shake here or there, and I'm good for a long time.

I used to cook. Even when I lived alone after college, then when I had a roommate, and even at the very beginning of our marriage, I did actually cook. But when I learned that my husband preferred, yes that's right...preferred Hamburger Helper to homemade dinners, I took the easy way out. It eventually slipped even further, as now HH is a "real dinner," as opposed to things like mini-tacos in the toaster oven, nachos, grilled cheese, and frozen pizza. While you're shaking your head, realize this....he actually LIKES this stuff, at least as much as he likes any food. He doesn't like to eat anything, really. He says that eating is a hassle, and he's jealous of Braska's ability to receive sustenance without putting forth effort. He even talked of seeing what it would cost to do an elective g-tube. Yeah, crazy, I know.

He likes turkey, if it's pulled/shredded and dried out about 10 minutes then salted. He will eat lasagna sometimes, tacos usually, chili occasionally, and chicken bits here and there, that's chicken breasts cut into small pieces or pulled then cooked again with seasoning until they're pretty dry. The hard part, really, is this... even food he "likes" are not always acceptable. Like tacos could be considered a favorite, but it is possible for me to have all veggies chopped, meat seasoned, and shells warmed and he'll walk in from work and not want tacos. Or I could make homemeade lasagna, one of my best offerings, which he does like, but after spending all the time to make sauces and layer and such, it wouldn't be a surprise if he didn't feel like lasagna that night.

SO in order to avoid such things, I've just gotten in a pattern of not planning at all. That's hard for me, as I am WAY a planner. Dinner time is the old college style "what do you want, I don't know, what do YOU want" kind of thing. Then I stand and look at a bare fridge and sparse pantry and give him options of mini-ravioli, beef ramen (which he actually CHOOSES sometimes), or popcorn. It's a sad place we've come to, but he really doesn't mind.

I, on the other hand, have fantasies about dinner time. Meals planned out ahead of time so that I can order my day appropriately and shop more efficiently. It's when we set a crock pot of beef roast and veggies on the table with rolls and salad. We sit down and chat about whatever comes to mind, things of the day, what's new with the kiddo. It's comfortable and relaxed. Even after 10 years, I still have that dream. Is it any wonder that we have a child with feeding issues? I don't think it's a coincidence...and the speech/feeding therapists that we've seen don't either. They keep trying to get us to sit at the table and include Braska. But our dining room is generally just a walkway from the hall to the kitchen. I keep thinking I'll do it with her, just us two, even if it's not a group thing, but I haven't. It's just easier to stick with the norm...catching up on DVR shows while I eat off a TV tray and he eats at his computer across the room. We're not eating the same things, so we don't usually even eat at the same time....well, sometimes that works out. Braska usually is already done with her 5 minute straight-to-the-belly dinner before we start. Then I fix whatever he's eating, then I decide what I'm going to eat and I make it.

Wow...didn't mean for this to become all about our eating, but it is kind of interesting, or pathetic maybe. We admit it. We're not deluded into thinking this is the right way, it's just survival on my part, and it pretty much the way he's always known.

So anyway...back to tonight. I have been very upset at the state of things and how bad they've gotten. Our house is trashed, like the worst it's ever been. This is completely unacceptable to me, but thankfully in a way, M doesn't mind. He never says a word about it... so at least I'm not being hounded. That's a good thing. But I don't like it. I don't like that we've been doing take-out too often, that we haven't been actually eating food, non-boxed. So today, after a frustrating therapy session that made me feel like I would NEVER get things right (not the therapists fault, she's good), I decided that I was going to get something accomplished today. So I started with the kitchen. I always start there. It's the one place I can dig into and actually finish. And when it's done, it looks so great.

Since I had a clean kitchen, I was more in the mood to put forth an effort to make something. So I decided on chicken, rice, and salad. This is on the "usually" list of acceptable things. We haven't had it in a while, so that makes it a better bet. I went through the process of the chicken (thawing, dicing, cooking, seasoning, cooking more until dry) then I saw an onion. This is rare because I don't usually buy produce because it always goes bad. M hates onions, so I got an idea. Why I thought of this, I do not know. I decided I'd make my own onion rings. I LOVE onion rings. I don't remember why I bought this onion, but who cares. I did a quick web search for batter recipes and there I went. I managed to keep an eye on the chicken, start the rice, chop the salad veggies, make the onion batter, slice the onions, and get them in the oil all in stride.

Man, they were good!!!! Check out how pretty they are!

In the end, M had a nice dinner of chicken bits, rice, and salad, followed by vanilla ice cream. I had part of a chicken breast, tomato, and onion rings! Now that's dinner!

I'll hold onto my dinner dream. Someday I may get there, but I'll not hold my breath. Raisin Bran will continue to be my friend, but at least for today, I accomplished a few things that made me proud.

Thursday, November 22, 2007

Thankful, very thankful.

Pam at Rhett's Journey tagged me for a meme of what things we're thankful for. I've meant to do another one of these for a while, but obviously haven't gotten around to it. (Reminds me of a wooden coin-like thing I had when I was younger that had the letters TUIT on it. It was round. A round tu-it. Get it... I always think of that.) Anyway.......

Since it's Thanksgiving Day, it's about time I get over my procrastinating ways and get to it.

~I'm thankful for a sound mind and good sense. I know that may be debatable in the opinions of some of you, but I've seen some disturbing examples in those around me lately of a lack of sound-ness. It makes me very thankful that I have the ability to consider a situation, review the options, and make a sensible decision. It's no small thing. I still goof up, but those seem to be fewer and less severe.

~I'm thankful that one year after living through the heartbreaking events of Braska's arrival and diagnoses that I'm not scared of those things anymore. There will always be obstacles and challenges, and I do still get frustrated about her feeding issues, but it's all manageable. In the beginning I really thought I was doomed and would never have a happy day without despair again...thank you hormones... so we've come along way.

~I'm thankful that God has it all figured out, and when I realize that and simply take the steps that he shows me, my life is SO much less stressed out and difficult. I'll never be free of trials while on this earth, but when I stop and just let Him do the driving, things are so much more bearable and even fun!

~I'm thankful for all you fellow DS bloggers! I have learned so darn much from all of you, more than I could have imagined. It's such a big part of my day to keep up with everyone, see what's new, learn from your frustrations, and celebrate with you and your precious ones! I wish so deeply that I had had the strength to dive into this resource sooner. But now I am the first to spread the word to new parents who find themselves in our kind of situation. Every time, they are as thankful as I am. So thanks to you all for continuing to share so that we can all know we're not alone!

~I'm thankful for the privilege of being able to stay home with Braska. It's been a huge blessing to be able to work from home for the past 3 years, grow a successful business, and now be able to cut back to have time to take care of all her appointments, needs, and my own sanity. I'm thankful for "the girls" who do the toughest work for the company and keep us going. You guys are the best!!

There are a zillion other things I'm thankful for, and I should be more regular in acknowledging them. I do spend several times each day JUST thanking God for blessings. It has made a huge difference in my attitude toward the issues I face. Make it a regular thing, not just one day a year. It'll add years to your life and great length to your patience!

Wednesday, November 21, 2007

The story: Special delivery

If you want to get caught up, all the way, then click here for the backstory.

So I rested and slept and thought and waited until about 2 am. The contractions were getting more intense, and although they didn't hurt, I could tell something was different about them. I debated in my head alot about whether or not I was feeling the "right kind" of pressure that they kept asking me about. Finally, I asked to be checked again, and what do ya know...it's time!

They called Dr. N right away and got me all ready to go. She got there in about 10 mins, got all gowned up, and said, "Let's have a baby." I pushed 4 times, over about 8 or 9 minutes, and there she was at 2:27 am. 7 lbs 0 oz, 19 1/2 inches. Nebraska Larae. I didn't have a bit of pain while pushing, either. Very cool.

It was all very exciting for about 1 minute. One precious minute of bliss. The baby went to the warmer just across the room and my husband followed. The doctor continued to do her thing on me, and I noticed that the nurses were whispering over at the warmer. I immediately felt uneasy and wanted to know what was up. Everyone just kept talking all hushed. Braska was crying, so I knew she was breathing and all. My husband came back over to me and I asked him what was up. I don't remember what he said exactly, but he blew me off, basically. Said it was all fine or something. He knew at that point. He just didn't tell me. The nurses talked to the doctor, the doctor looked at Braska, then she came to finish up with me. She was telling me all about what to expect for my part of the recovery, etc. Finally they bundled the baby up and brought her over. I knew immediately when I looked at her. I could see it in her eyes.

I feel the sense of loss again now just as I did in that moment. But now it's passing and minimal. Then it was the whole world.

From there on, for the next two weeks almost, I was in a fog. I don't remember alot of things. Some I remember distinctly though. Dr. N came and said that they suspected Down syndrome and that they would draw some blood and confirm. She said they would be running an echo to check for heart defects, but that she didn't think they'd find any since all of my ultrasounds were good views and showed nothing. Wow.

They came to draw the blood and they stuck her I don't know how many times. I don't know now why I didn't make them stop. Tell them to do it later. If I'd have realized how unimportant it was at that point, I would have, but I was numb and almost couldn't put a thought together. I sat there and watched them stick her and she screamed. Not 30 minutes old and she screamed for almost that long while they tried to get blood. Finally, she went limp. I thought something happened, but I think she just shut down. They continued to stick her but she didn't move. Her eyes were open, but no sound. It was heartbreaking, I do remember that. Thank God she can't remember that.

We spent the rest of the "night" trying to rest as she slept in her little acrylic crib at the end of my bed. I watched my husband sleep, and my mind just raced and was nothing all at the same time. I remember thinking about how it must have been all the stress of the first trimester that did this. I was so mad at the people responsible for that. Then I thought maybe it was some kind of mistake...I thought that alot. But I knew. I just knew.

I felt that this was the worst thing that could happen. This was a sort-of surprise pregnancy, one that brought a great deal of problems to our marriage early on. Things had been looking up over the last couple months of the pregnancy, and I was hopeful that this was a new start. But nope, that wouldn't be possible now. This would be the icing on the horrible cake. I was sure that I had lost everything I knew and loved at that moment, and I would be left to deal with this child and all her problems alone. You can see how I didn't get much sleep those few hours when I had the chance.

Braska hadn't been the least bit interested in breastfeeding when they had me try, but then again, that was right after they'd made her a pin cushion for 45 minutes. Who could blame her? Man, I wish I'd had my senses about me...so much I would like to correct. That's the nature of reminiscing, I guess. So she hadn't eaten at all at about 6 hours. The nurses took her to bathe her and try to get her to eat. They gave her a little from a cup, they said, but not enough. So we were told that they were moving us to the postpartum area, they were taking her for the echo, and she would join us there. We waited about 2 hours, and I was getting anxious. Finally, they brought her in, but only for a few minutes. They said she'd still not eaten, and they were going to put a tube down her nose and into her tummy to feed her. I was not at all happy about that. In fact, when they took her to the NICU to do this, and then called for us to come see her, I couldn't go. My husband went first and came back to tell me, "It's not that bad." I did manage to go in there for a short while, but I had to leave.

The NICU doctor came to tell us the results of the echo that afternoon. I remember him standing there with his PDA (the device), talking to us about a PDA (the defect) and mentioning AV canal. I listened closely and understood...after all, I work in medicine and medical terminology. I thought I could handle it better because I "got it." But after he told us the situation of her two holes and what to expect, including surgery at 3 to 6 months old, I fell apart. I had a harder time with the heart stuff than I did the DS at that point. I kind of refused to think about the DS, hoping it would be wrong. But this heart stuff, that was for sure. That was proven to exist, and I couldn't deal with it.

The rest of that day is a blur. I know we had friends come to visit and some family in and out. But I was just a shell of myself, as they say. I only remember going to sleep that night, my husband getting out of his bed and crawling into mine to hold me and cry with me. As painful a time as it was, that moment will always be a cherished one. We talked then only a little, but it was probably the most connected we had been in months before and after. For that moment, we were in it together. And that's how the day ended.

November 21, 2006. One very long day. One very sad day. But the day that led to many, many happy ones to follow. If only I could have glimpsed that then...

Wednesday, November 14, 2007

Mommy report: New record

During feeding therapy today, Braska decided to try a few new things, and show off a few others. She ended up taking almost 7 oz total (finishing 1 partial jar, downing a whole one, and starting a 3rd), which is a record, for sure. She showed off for Miss Louis with some raspberries, mouth full of food, of course, and with some very passionate short bursts of some apparently important information that we couldn't quite decipher.

Here's some visual evidence of the other recent mealtime fun.



A common theme during feeding therapy sessions has been Louise telling me that I have to let Braska make a mess, which I'm not good at doing. I tend to want to keep hands clean and all mess on the bib only. Today, I succeeded in letting her go at it. And we ended up covered in mush...both of us.

Thursday, November 8, 2007

Best laid plans

Today was going to be a day to get things done. We didn't need to go anywhere, we didn't have any interruptions on the schedule. I was going to get caught up with work-work, make a dent in the backlog of housework, and start tackling the 10 x 10 pile of paperwork that I still half-heartedly call my office. I love productive days.

That was the plan. The reality was a bit different. Braska was especially grouchy this morning, a pattern that's been increasing the last few days. It's not fun and completely out of character for her. I realized that we had never returned the syringe pump that we used for feeding, even though we haven't used it in over 4 months. After getting Braska dressed to go out, she spit up on her outfit...repeat twice. Eventually we got the belly settled and more clean clothes on, so I ran that over to the medical supply place. When we got back it was lunch time, M was home, time to feed him and then it was Braska's turn. She griped and complained and finally fell asleep on me. I decided the sleep was more valuable than my getting up to do anything active, so I held her with one arm and worked on some work-work with the other, laptop precariously perched on one leg. Typing with one hand is not my forte.

When she woke up, she was happier, thank goodness, but I must admit that my motivation for this big productive day had waned. She rolled around on the floor talking to herself and her toys in a grumpy tone for a while as I finished up several batches and projects. At least I got that done!

Now it's almost time for M to be home, and I should be thinking about what I'll do for dinner. I'm for cereal all around, but then I could do that just about every day. I need to do a whirlwind kitchen cleaning in the next 13 minutes before I can think about getting more stuff out to start dinner. We'll see if the BraskaBear is agreeable to the situation...

Tuesday, November 6, 2007

November at a glance

Just re-did the whiteboard calendar in the kitchen...This month is gonna be a bit busy. Some things aren't really "to do" but I'm sentimental, so remembrances still count. ( I realize I'm a few days late, so some have already passed...but you get the idea.)

~Nov. 1--10 years ago my husband rolled into town here with all his belongings in his car (and his parents' truck too, as I remember it) to move in and start all over after being in Montana for many years. I came then, too, arriving that night for my first weekend visit here. And the rest is history, kind of... he (and me, occasionally at first) has been here ever since. For both of us, this is up there with the longest we've lived anywhere, since we both moved alot as kids.

~Nov. 1--Appt with realtor (more on this later) to discuss improvements we plan to make and what priority is best. No, we're not moving.

~Nov. 3--Saturday singles...I'm meeting a couple times a month with a group of college girls for chatting, breakfast, some Bible study, and more chatting.

~Nov. 6--OT (occupational therapy for Braska)

~Nov. 7--ST/FT (speech/feeding therapy for Braska)

~Nov. 11--Our wedding anniversary. 7 years.

~Nov. 11--Julia's (youngest sister) 12th birthday.

~Nov. 12--DT (developmental therapy for Braska)

~Nov. 13--OT

~Nov. 13--Braska's one-year pictures

~Nov. 14--ST/FT

~Nov. 15--To St. Louis for Braska to get her new button .

~Nov. 16--Belle(the pooch) to the groomer.

~Nov. 20--My parents' 37th anniversary.

~Nov. 21--Braska's 1st birthday.

~Nov. 22--Thanksgiving. To my parent's house in Missouri. (I think we're doing Christmas for this side then too.)

~Nov. 24--Possibly to Columbia, MO to see friends then to St. Louis to in-laws.

~Nov. 27--Braska's one-year day full of appointments in St. Louis (ENT, audiology, cardiology, eye, labs, DS spec/geneticist) ...then finally home.

~Nov. 28--ST/FT

Actually, that doesn't look as bad as I thought it would....scary as that is. There are a few other little tidbits here and there, lunches with friends, personal appointments, and things can always change... but it should be a fast month. And I'm all for that.

Saturday, October 27, 2007

31 for 21: What to say

I have encountered plenty of people who ask "How old is she?" when Braska and I are out together here and there. They always guess her age about 5 months younger than she is, but that's ok, since that's what size she is. I have said several times that I can imagine it will bother me a bit more, although still not a huge deal, when she turns one next month and I see their reaction to that, as she still is in her car seat/carrier when we're in a restaurant or in a store since she doesn't sit up.

Today, I met some friends for brunch. The waitress was a nice enough, very young girl, and she started cooing at Braska right away. That's nice. I don't mind, Braska likes the attention, and I'm proud of my cutie. The waitress asked her age, and I told her 11 months. She then said, "But she's not walking yet?" as she noticed that she was up to the table in her car seat/carrier. I just agreed and said, "Not yet." She said she had a 14-month-old and told me how soon I'd be running after her. "Mine was walking by then," she said, referring to Braska's age. I just smiled and took a drink, trying to politely end that part of the conversation, hoping that one of my friends with me would say something about food or that she would walk away to let us look at the menu. She paused a moment, then finally said she'd be back in a minute.

I told my friends then that I never know what to say, and that's the truth. I almost feel like I want to defend Braska or something...like it's not her fault that she doesn't sit yet. But I also don't want to be just constantly blurting out that she has DS for no real reason. So I guess it's something I'll get used to. It's better now that her feeding tube is under her shirt instead of in her nose... that helps cut down on comments and questions, but still. Maybe I'll sit down and plan out some possible statement that I can kind of keep in mind. That's how I am. I like to be ready for situations. Then again, maybe I'll just go with it.

I don't mind telling her "story." So it's not that, I just wish I new what the right time was to say this or that.

Friday, October 26, 2007

Mommy life: A big evening!

Braska's been holding out on her therapists. In the therapy sessions, they try and try to get her to reach for things, but she's completely uninterested in any of the zillions of toys that have been presented. She just recently, like in the last few days, has been starting to reach for my hands when I go to pick her up, and that's been fun for us. She doesn't really reach up, like she's asking to be picked up, she reaches out to hold the hands, but only if I put them palms facing her...like I'm miming a window between us. I say "hands" and she giggles and reaches up to grab my hands. She's done it for her Pop too, and that was good times.

She has also been extremely interested in her tubing while it's hooked up for her bolus feeds to the G-tube. She spends the entire feeding--granted, it only takes about 3 minutes (perk of the situation)-- reaching and following the tubing around when I move it to add more formula or to try to evade her grasp. She's been showing great attention and focus for extended periods compared to just a couple weeks ago.

Tonight, she really went crazy though. Pop was relaxing on the couch with some Sudoku and Braska came for a visit. She took an instant liking to that little paperback book and spent the next 25 MINUTES grabbing, shaking, giggling, kicking, and generally getting a crazy good workout while loving every second. This is a record by far for activity, focus on one object, strength in her grip on something not very easy to hold, and plain old fun. Here's a couple snippets that were about 15 minutes into the fun time... she'd slowed down just a tad and was relying more on her feet.

Every time we'd take it away, thinking she was done, she'd reach out and grab it again. This was right as she was heading to bed, and she was pretty tired, but it didn't stop her from being super jazzed about this book. When she finally did finish, I filled her little belly and off to bed she went. She was out like a light...even more than her normal instantly-to-sleep pattern. Both of us watched her playing with big looks of amazement. It was great to see. I wish I'd have caught more at the beginning. Even though she looked like she was finished at the end of the second video, she went on for another 6 or 7 minutes. She almost seemed obsessed! We're going to test it out again tomorrow to see if the same item is as interesting.

Saturday, October 13, 2007

Mommy life: Blog suggestion box

Alright, it's time to come out from the blog lurking shadows. I know there are hundreds of you checking in on us every week, and that's GREAT! But I'd like to know what you'd like to hear about or see in pictures. Are you interested in therapies, doctor visits, and progress? Are you into Braska's social calendar? Would you like to know more about the feeding process and the tube transition? Do you prefer the "normal life" kind of stuff? Would you like to know any specific things about Down syndrome, heart defects, or feeding issues?

Come on, take the plunge....leave me a comment with what you'd like to see or what your favorite part of Braska's little blog is. You're taking the time to come by to see us...we'd like to make it worth your while!

31 for 21: Day off?

Saturday for some people means a day off. I used to get days off, and they were great since I worked alot and had fairly stressful responsibilities. Almost three years ago, I began my own business so that I could be home and work less, hoping to enjoy a bit of life outside of work for a while. In a matter of a few months, things had grown out of control to include an increasing number of clients and a few employees (independent contractors actually, but it's shorter to say employees).

This business requries that I'm on call 24/7 and available to be at a client's office within a few minutes if necessary, so that quickly made days off a thing of the past. Although the work schedule is somewhat flexible ordinarily, we generally work 7 days a week, at least a little each day, to keep caught up. And at any time, a client may call and need work done right then, no matter when it is. Someday I'll elaborate on how that affected me immediately after Braska's birth...someday soon maybe.

Anyway, the other piece of the puzzle is that when I do have a "day off" of any kind, I view that as a chance to get caught up on household tasks. Unfortunately, I am the only one who holds this view in my family. So you can see how any day off is not so much a day off.

Today, a Saturday when I was actually caught up with work-work, ended up being pretty busy. Between feedings and diaper changes, there were a couple trips to feed and let out a friend's dog, some good thorough kitchen cleaning, errand to the library, and mostly the hours spent on the pool...again. I have officially spent more time trying to get this thing closed than I was in it all summer. That's so sad to me... I love my pool, but it's lost a bit of it's luster in the past couple summers. It was fun to see Braska play a couple times, but that's about all that we got to enjoy it. But today was little enjoying and mostly working. An hour or so of skimming and such, some master chemical work to prepare for winter, on hands and knees scrubbing the waterline all the way around, laying out waterbags, and arranging the winter cover. Here's what it looked like mid way through.


I did get a quick hand with filling waterbags tonight after M got home from a full day of overtime. Tomorrow I hope to get things done with the final vacuuming, winter fixture changes, disconnecting the pump and filter, and getting everything stored away.

So I wouldn't consider this a day off, but at least I got some things accomplished. Come to think of it, I haven't had a day off in almost 11 months, but I guess that's life. I'm about ready for one though...maybe I'll work on that.

Wednesday, October 10, 2007

31 for 21: The first straw

Today brought a visit from Louise, our speech/feeding therapist. She started working on teaching Braska to drink with a straw. The initial signs are good; she forms her lips around the straw really well, so Louise said we're off to a good start. There's no sucking, of course, but we've got an action plan. She also gave some encouragement regarding Braska's eating and speech habits already that show strength in her jaw and control of her mouth that will bode very well for us as we move forward. I feel like there was more to it that I was going to report, but now it's left my mind. But it was good...I'll just hang with that.

Tuesday, October 9, 2007

31 for 21: The whole dang jar!

Feeding issues aren't something every kid with DS encounters, but it's not really uncommon. It IS more rare that they have the issues and aversions as severe as Braska and for as long. I think she is just too much her father's daughter. He still has severe food aversions at 33. I'm so jealous of people that can plan their meals ahead of time, even a few hours ahead, and especially if they can fix just one meal.... I don't really remember what that's like. I typically get Braska's dinner, then fix something for M, and then decide what I'll eat. But that's another story for another day...

Braska typically eats solids, AKA baby food from baby food jars, twice a day. She's much improved from what she was about a month ago in both the quantity she'll eat at a sitting and the rate of speed for the feeding, which I'm very thankful for. It used to take her about 45 minutes to get down maybe half of a level 1 jar. (That's a little over an ounce.) She just plain took her time, looked around between bites, mashed the food around in her mouth for quite a while, and eventually would turn back toward me and stick her tongue out. (That's her sign for more, she doesn't really open her mouth.) Lately, she's been doing much better, taking between 2.5 to 3 ounces in about 15 or 20 minutes. I've been pleased with that, for sure.

This morning, she was not in the mood. She took maybe 2 bites, under coercion, and was just not interested. So that was that. So this evening, I thought I'd see if she was more in the mood. She generally does her best eating in the evening for some reason, anywhere between 7:30 and 8:30 pm. In our situation, I don't ask questions...we just feed her when she wants to eat; aside from her regular tube feedings, of course. And tonight she was more in the mood. I opened a new 4-ounce jar of Apples & Squash, spooned some out to another jar so I could add the oat cereal. (She eats that in everything, as she doesn't care for thin, runny things.) She ate that batch, then I went back for a second batch, then I just took the original jar, oat cereal added there too, and she finished the jar! Yep, she ate 4 ounces of Apples & Squash with about 3-4 tbsp oat cereal added. And all that was in about 15 minutes. She was in a great rhythm and maintained her interest pretty well. I hope we can make this a habit. It's the second time in about a week, but this one was better. So let's keep up the progress!

Now, if we could just convince her that liquids are fun too!

Saturday, October 6, 2007

31 for 21: Thanks Karen K

Last night while we were at the concert, good friend Karen K came over to stay with Braska. She has two cuties herself, Maddy and Grace, but they got to spend the evening with their dad. Braska's had a bit of Must-be-with-Mommy-itis lately, so I was hoping that this wouldn't be one of those nights for her.

We've left Braska with friends before, but we typically arrange not to be gone over a feeding time. But this time we couldn't quite work that out. So Karen came over early enough to listen to my run-through of the important info.

~If you want to try to feed her orally, here's the food, already thickened.
~Be sure to use this particular spoon.
~She won't open her mouth, but she sticks her tongue way out when she wants more.
~You have to have a spoonful of food ready and within sight for her to tell you she wants more. If it's not there, she seems to assume there's no more to be had.
~Push down slightly on her tongue and then into the mouth. She'll close her lips, then pull the spoon straight out.
~Don't use the upper lip or gum to scrape the spoon, coming out upward. Must come straight out.

~For milk feeding, here's the syringe and extension tube.
~Make sure to have a washcloth underneath the end of the g-tube when you open it. Stuff comes out.
~Prime the extension tube first to avoid air in the belly. (Demonstration given.)
~Hold the syringe of fluid just a few inches over her belly, as the higher it is, the faster it goes. Sometimes too fast can upset things.
~If it starts to slow completely or she starts to cough up little bits of milk, you're done, and she's full.
~Otherwise, she can take all 6 ounces.
~When finished, again make sure the washcloth is under. Backflow will happen.
~Rinse the syringe, extension tube, and bottle right away to avoid clogging.
~Try to burp, but don't be surprised if it doesn't work.

They played and laughed and played. Braska ate marvelous for her oral feed and had no issue with her tube feed, and she went to bed like a champ, as always. Karen reported a good evening all around and even got in some peace and quiet with some always-important Seinfeld. God bless you, Karen. Much appreciated!

Monday, September 24, 2007

Trying to make time

I haven't forgotten about this blog, but it's fallen to the side a little as I'm having trouble keeping up with much of anything lately. I have some major life decisions that must be dealt with, a house that's in desperate need of maintenance and cleaning, and plenty of other less daunting things, but I'm not accomplishing much toward any of those things... but hopefully soon. A plan is in place for a few changes, so we'll see how that goes over the next couple weeks.

In the meantime, I'm spending my days trying to get enough fluids in Braska to keep her hydrated without overfilling her belly. (FYI...in case you don't follow her blog, we did go through with the G-tube procedure two weeks ago today.) It's hard to know how much she needs since she gives no cues, just sits there and talks while we put the milk right into the stomach. She's still sleeping well, which is a blessing, so that's good. In between milk feedings, I work with her on oral feedings, and that's a long process. So really, the whole day is all about feeding her, or cleaning up from feeding, or prepping for the next feeding...and a few diaper changes in there too. Add in therapy three times a week, weight checks once a week, and still trying to find time to make two adult meals a day, and where does the time go?

So I've got things I'll be addressing soon, some stories I've been meaning to get into a readable form, and I hope I can make it happen in the schedule soon.

Monday, September 10, 2007

Better evening

It's been a nice evening. I haven't felt so icky tonight. Mommy has made me a bundled up place to lay so that I'm comfy on my back, so I don't mind it so much. Auntie Rachel and Mr. Patrick came by to see me, and Auntie Rachel brought me a pink panda! She has brought me a different kind of panda every time I've been in the hospital, so I have three of them now. Thanks Auntie Rachel!

Then Grandma C and Grandpa John came to see me too.
I showed them how I can play with some of my toys a little and I got to watch Baby Mozart again, which was fun. I decided that I'm gonna kick my foot like I always do even though it has a big thing on it and a tube in it. Mommy says that is there so they can give me medicines if they need to, but since they're not using it, I decided I'm just gonna kick it off. I'm trying hard, too!
I just had another feeding at 10 o'clock, and now it's time for bed. Mommy's especially tired, so I'm going to try to sleep all night like a good girl so she can rest too. She told me that they'll come in to clean my thing while I sleep, but I hope they don't wake me up. G'night!

Thursday, September 6, 2007

Retropost: Party for the grandparents!

Last weekend was a big one for me. I met a whole bunch of cousins I didn't even know I had. We went to a place called Iowa on Friday night after Pop got off work. Grandpa John, Grandma C, Uncle Ethon, Miss Cheryl, and Uncle Levi were there when we got there. It was nice to see Great-Grandma and Great-Grandpa M, especially since the whole party weekend was all for them. This year they had birthdays when they turned 80 years old and they're getting ready to be married for 60 whole years, too! So Grandpa John and his brothers and sisters threw this big party for all the family to come from all over and have a good time.

We took alot of pictures, but here's a few for you to see what kind of things I did while we were there.

Friday night when we got there, my Pop and my uncles and Grandpa John got down on the floor with me to say hello. They were kind of poking on my feet and on my tummy and playing with my ears and stuff. I don't know what they were doing really, but they thought it was funny. When Pop and his brothers get together, they always do silly things, and I guess I just got mixed up in the silliness.


Saturday Pop and the boys went to play golf after breakfast and the girls stayed at Great-Grandma's house and helped get everything ready for the big party on Sunday. I spent time on a walk with Grandma C and took a nap. Aunt Georgette and Cousin Sarah got there with all the food for the next day, so Mommy and the girls were all in the kitchen working on things and chopping and stuff.

After the boys got back from golf, we went down to Uncle Jerry's house for a cookout, and there were alot of cousins there. Big ones and little ones, but Mommy said they were all cousins. Pop sure has alot of them! They all came to say hello to me when I got there. Isn't that friendly of them?


Sunday morning we got up and all went to church with Great-Grandma and Great-Grandpa M at their church.


We even got dressed in our special nice clothes for them.


After church, we changed clothes really quick and went to the park to get all ready for the party. We worked some, and then we chatted some while we were waiting for people to come.


It was a pretty fun party. There were almost 100 people there, someone said. And that was all family! That's a whole bunch! Lots of people came over to say hello to me that I never met, but they said they like to read my stories on here. Isn't that cool?! So hi everyone!! It was nice to meet all you aunts and uncles and cousins and friends!

I met a special friend Valerie that I've heard alot about. Everyone always talks about how great she is, and I can tell you they're right! She's got an extra chromosome just like me, too. She's a cousin somewhere down the line, but I don't know how that stuff works. But her family was super nice, and I got to spend a little time with them, which was fun. Hi Valerie!


Pop took me out on the playground too, and we went down the slide. I thought it was pretty fun, and it was so nice and breezy out there, too!


There was alot of funny stories, and there was a neat video that even had me in it a little bit too! And there was lots of yummy cake. I even got to taste a little.


After the party finally got over, a bunch of the cousins went back to the grandparents' house for more games and stuff. Pop was feeding me, and some of the cousins came over to see what was happening. I guess it's fun to watch me get my food or something.


Monday morning we all went to brunch, at least the ones of us that were still there. I sat with Great-Grandma and Great-Grandpa for a while.


It was a fun weekend, but I was sure tired when it was over. I don't think I remember everyone's names that we met, but it was nice to meet so many people. I think the grandparents had a good time too, and it was all for them! Thanks to Cousin Kathy for letting Mommy and Pop and me stay at your house while you weren't home. That was really nice!

I hope we can have another family party sometime soon....after I get some rest!

Thursday, August 30, 2007

Mommy report: Overall update

I thought it might be time to kind of bring everyone up to speed on where we're at, in adult terms. :o) This might be a little long, but so many of you are so kind to ask about what's up that I thought I'd just put it all out there at once.

General health--Braska is doing well, hasn't been sick yet (except for rotavirus, of course) with any kind of cold or ear issue or anything, and for that I am SO very thankful. I think that's quite an achievement for 9 months, myself. Her heart seems to be pumping just fine after the repair, which is now 6 months ago. Seems like yesterday and 3 years ago all at the same time. Her thyroid is functioning properly, and her other labs have been good. EXCEPT for the last two draws which have shown increasingly elevated hemoglobin. (Very minimally elevated, though.) No one seems to be too concerned about it, but they are keeping any eye on it, I guess. We'll have it checked in 3 months at her one-year visits if not before. But we hope it's nothing. The only thing mentioned is that it might be an oxygen issue of some kind, which sounds like it needs to be checked out, but no one seems in a hurry at all and they all say it's nothing to worry about. So I won't, for now.

Therapies: occupational and developmental--These are going well. She continues to cooperate most of the time and is getting stronger, but it's all about when she decides she's going to do the next little thing. When she wants to sit, she will, and until then, there's not much we can do to entice her. The therapists have both noted that we have yet to find a toy that motivates her to do anything really. The only thing she reacts to every time is an open hand coming toward her face slowly. That's about the only time she will reach high with both hands and grasp quickly and firmly. She takes it directly to her mouth and gums like crazy. Any other toy may garner a gaze, and sometimes a lackluster reach, but that's about it. She's a picky one, that's for sure. She has become much more generally energetic in the last week or so, probably due to an increase in her amount of milk per day. Since she doesn't really indicate hunger at all, it's hard to know how much she needs/wants. Which brings us to the next category...

Feeding--Inconsistent is the key word. She will do several things, but none of them with any consistency. She will eat solids pretty well, but usually only once a day, and usually that is in the evening. She eats green beans with rice, sweet potatoes, squash, and beef with applesauce, each in little bits, and if she's in the mood that particular day. But she'll eat bananas and banana pudding about any day, as well as applesauce (not baby, big people applesauce), peaches occasionally, and pears rarely. She definitely likes her sweet things. She still refuses to suck on a bottle, but she will sometimes chew on it and swallow what she gets from that. She will take drinks from a particular sippy cup if they are given in small doses, but only a few at any sitting. Our big challenge is definitely to get her to take fluids, so most of her feedings are still done by NG. She's getting about 24 oz a day in 4 feedings, which we just went to about a week ago. Like I said above, she has responded to the increase in amazing ways with more playfulness, more general movement, wiggling, etc. She's always been happy and content, but she is now a bit more animated and less likely to sit still on a lap, which is good in the big picture, I guess. Louise was very happy with her first time to watch Braska eat yesterday, and she is optimistic that we'll be able to make strides toward being independent of the tubes, but probably not soon enough to avoid the G-tube. So about that...

G-tube--I talked to the GI dr's office again this morning and they're determining if we need to have any testing before we get on the schedule for the PEG process. (For those of you who are less "internet-familiar" you can click on PEG process to go to a description of the whole deal.) I would guess that we're looking at possibly the week of the 10th or the 17th of September to get it done, unless there are more things they want to check out first. I should get a call back later this morning about that. I'm resigned to the fact that it needs to be done, so it's ok. We'll handle it like everything else, learning as we go. Mostly I'm praying for no complications to what should be fairly "routine."

It's amazing to look back and see how far we've come. I find it hard to even remember how life used to be, and that might be a good thing in some ways. For now, we're moving forward and smiling as we go. She's a real peach of a kiddo, I must say, and I'm thankful for her everyday.

Thanks for taking the time to come by so often and keep up with us. It does so much good to my spirit to know there are so many friends out there who care enough to check in. And it's even better when we get to read your comments!!!

Thursday, August 23, 2007

Still don't wanna

So I've spent alot of time this morning looking over information about G-tubes, specifically the PEG process, which is what our doctor would use. Braska doesn't seem to be improving in her eating, and I'm just getting tired of the battle. I feel like that makes me a bit of a mothering failure, to be honest, yet I know that I've tried everything I can for 9 months now. I just hate to put her through another procedure, and I guess I've become a bit paranoid about the possibility for complications. As I told a friend yesterday, they say it's routine, but what's routine? How can poking a hole in my baby's tummy be so routine?

I guess this is just another one of those situations when being the adult is no fun. So many people say that their kids did so much better once they got rid of the NG and went to the G-tube, but then there are a few who seem to simply have a different set of problems. And if I'm going to have problems anyway, I'd rather do it without having to put her through this royal poking. I'm still struggling with the fact that my gut is telling me not to do it. But what is this gut anyway? My fear of the unknown, more work, new things to learn about how to care for her? I suppose I'm not so sure I trust my gut anymore, or at least about this one thing. I think I've probably thought about it too long.

When I have a big decision to make, I like to look at the pros and cons....usually making a list of them. (Thanks to Mom for that habit.) Even if I know on some level there is really a right way to go, I like to be sure I've considered all the options and made the most educated and thoughtful decision possible. My husband doesn't particularly like this part of my personality, I don't think, but it helps so much when he'll actually humor me and have a full-on, weighing-the-options, decision-pondering discussion with me. But we haven't had one of those in probably 2 years, so I'm out of luck there. He says just do it... get the G-tube, so she won't have a tube in her nose and tape on her face. Good points, sure, but considering the alternative, I just don't know.

In so many parts of life, I'm decisive. When it comes to work, I can make important decisions in record time. I guess I'm just finding that decisions about my child are way different. Not that this should be all that surprising, but still. I just feel like I'm on my own, and that sucks. Plain and simple. I keep praying about it, and I kind of think God is just rolling his eyes, saying, "I'm giving you every possible sign I can!" She doesn't eat enough. She won't drink hardly anything, and she doesn't seem to care. I've made every excuse. She always seems to be just on the brink of some great improvement. We start with a new feeding therapist next week, the guru of our area, so I've been holding out for that. But truth is that even improvement won't be enough at this point. She's got so far to go. Maybe she won't need it for long, but she does need it.

So I guess it's just me... I'm the hold up. I think it's time to give up the filibuster and get on with it. Suppose I should call Dr. R and see what's next.

Any given day

This is an example of a recent day, but it represents most. In case you think I am just spending too much time basking in the sun while floating in the pool. (Ahhhh, those were the days...)


6:25 am

Wake husband. Wish I could sleep more. Listen to Braska chatter in her room, as she's been awake for a few minutes already.


6:30 am

Get Braska up. Change diaper. Enjoy morning smiles and giggles. Decide if she's getting dressed or staying in PJs....usually go with the PJs.


6:35 am

Wake husband again. Let the dog out. Measure out 5 oz and start Braska's milk warming. Turn on computer in office. Let the dog in.


6:38 am

Wake husband again. Attempt to try to move him the two steps from his side of the bed to the bathroom.


6:40 am

Return to the kitchen to prepare Braska's milk. Add medicine and vitamin to it. Finally hear the sound of the shower at the other end of the house. Gather syringe, tubing, milk, and baby.


6:42 - 6:50 am

Sit down in recliner with gathered items. Deposit 5 oz of milk into baby via the tube. Thank God she can handle it without waiting on the long pump system. (Manual is so way faster.)


6:50 am

Put used bottle, syringe, tubing, etc back in kitchen. Remind husband in shower that he needs to be at work in 10 minutes. (Lucky we live so darn close.) He always swears he "just got in."


6:55 am

Clean up from milk prep and wash bottle, syring, etc. Collect items for pumping. (Breast pump...9 months and counting). Kiss husband goodbye as he walks out the door. Put baby in some type of restraining toy (bouncy, walker, swing, etc.) Pour bowl of cereal for me.


7:00 - 7:15 am

Pump. Might watch a little TV to pass the time. Eat my cereal.


7:15 am

Wash pump stuff. Store breastmilk. Make Braska's cereal w/fruit. Gather bib, spoon, sippy cup, washcloth, and food.


7:25 - 8:00 am

Put baby in high chair. Attempt to feed baby as she eats extremely slowly. Intermittently attempt to give sippy cup. Give plenty of breaks per recommendations of the feeding therapist.


8:00 am

Clean baby and high chair. Put away

Tuesday, August 7, 2007

Mommy report: Biopsy results and a GREAT post

I got a call from Dr. R (the GI) last night, and he said the rectal biopsy was negative, showed her nerve cells are all as they should be, so no Hirschsprung's here! Good news for us! I knew it wouldn't be, as she just didn't fit the symptom list consistently, but it's good to know for sure. He said that since she is improving, although slowly, with her feeding, we'll give her a few more weeks and reevaluate then regarding the gastrostomy (G-tube) procedure. I still hope we can avoid it. Her lab work looked ok, just a few things that were only the itsiest bit off, folic acid and B12, so were going to follow up with Dr. Y, her pediatrician to keep watch on that.

Also, I want to encourage you to take a few minutes and read this post from Michelle at Big Blueberry Eyes. I know many of you read her blog regularly, but she does an exceptional job at responding to some questions about raising a child with DS, and I think it is SO well stated that I encouraged her to see about publishing. If you have now or ever do have a friend who struggles with a prenatal diagnosis of DS, or even finds out at birth like we did, please share this with them. I think it could save some beautiful little lives. Plus, it is good for us parents, too. Fantastic, Michelle!

Thursday, July 19, 2007

Mommy report: Good GI appointment


We met Dr. R, the pediatric gastroenterologist, today for consulation regarding the G-tube. My issues with it are really just trying to determine how to decide when it's time to look that direction. He was very informative about what it entails and it's risks and benefits. But the good news is that he said, although she would be a candidate, she is not at the point where she NEEDS to go that route. That's good, as far as I'm concerned. Since she is not having any necrosis concerns in the nose or throat, and since she doesn't seem to eat or nurse any differently when the tube is in or out, we are not at the point where we need to get the NG out for good right away.

She has eaten (breastfed) much better the last few days, so that is encouraging. She was going to spend this upcoming week with Grammy Jan so I could get some much-procrastinated work done, but since she's doing better and being more consistent, I'm not going to give up on her yet. Dr. R agreed that we should continue to work with her on this and other oral therapy helps and touch base with him in a couple weeks. He did order some blood work, and we had it drawn after the appointment.

On a separate topic, but still GI related, he is concerned about her constipation history along with the DS diagnosis, so he recommended that we do a biopsy of her rectal tissue (ewww and ouch!), and we've scheduled this for Monday since we're already down here. We've made arrangements to stay the extra day (Thanks tech group for being so darn flexible!!) so we'll be able to get that taken care of Monday morning. He's looking for Hirschsprung's disease, or hopefully ruling it out, but I hope it's not too traumatic. They don't sedate for it, but it's supposed to be very minimally uncomfortable. I have to say that after researching this quite a bit, I really don't think she has HD, but since the procedure to verify that is minimally invasive and quick, we'll go ahead with it.

Thanks for all prayers and well wishes. I am praying hard that she continues to feed well and even better all the time. I'm optimistic that she can overcome this feeding stuff without resorting to the G-tube, but I'm aware that it might be necessary at some point. For now, we'll keep working on the progress we've started.

And now, it's feeding time again.

Tuesday, July 17, 2007

Think back. Move forward. It's time.

Today I was catching up on my DVR recordings...I set it for lots of stuff, but don't have time to watch so much of it. Something most people close to me know--I'm kind of a "church nerd," you might say. I like good sermons. I love going to hear great speakers challenge people. And I like listening to Christian talk radio...it's one of my favorite things about going back to St. Louis for visits and appointments...I always get to hear something that I really needed at that exact moment. I like listening to speakers who tell me things that challenge me and help me grow.

One of the guys that I listen to alot is Dr. David Jeremiah. I don't agree with every little thing he says or philosophy that he holds, but he often deals with things in a manner that makes very clear which areas of my life that I need to evaluate and improve. His style of presentation is very straightforward, which is what I like. Some people like a happy comfortable sermon or topic, but I prefer the ones that step on my toes and make me take a hard look at myself. (I have not always liked this style, and it's still a little interesting to me that I do now. I think it's because I've seen how the heartbreaking can bring about the beautiful.)

So I've got my DVR set to tape Turning Point with Dr. Jeremiah each Sunday morning, but I usually don't get to see them until they are many weeks old. The last couple of days, though, I've made a point to try to catch up on them while I'm pumping or feeding the poonchin. There have been several great messages in the ones I've gone through: One about the example that Joseph's life shows us in how difficult circumstances are used by God to prepare for ministry to others and victorious outcomes. It was a good one. I needed that one.

This message I've just finished was called "Think back...Move forward... It's time." It's from the 9/11 memorial, where Dr. Jeremiah recently visited. But I agree with him that it's a fitting thought for everyone. Thinking back and remembering is important, even if painful, in that it reminds us of how far we've come and what we've endured. Yet we cannot live there, in the past, regardless of what it looks like. We must move forward. And now is the time to do it.

Thinking back is not always on bad times. Sometimes it is in dwelling on a very good period that makes us discontented with our current circumstance. It is not only the painful past that must be left in the past, but the glory days, although appreciated and enjoyed, must also remain where they live. Many of the most difficult moments in my life stemmed from one's inability to let go of a fantasy from many years past and deal with the reality of today. Most of us loved being 19 and free, able to do whatever we want. But to be angry about the loss of that perceived freedom to the detriment of the blessings that are being allowed to pass by unnoticed in the present...this is a tragedy of the saddest kind. Move forward, it's time.

For me, this is paramount to my survival and my sanity. I could dwell on the disappointment of my daughter's Down syndrome diagnosis and all that will mean, or I can enjoy her for who she is...exactly who she was meant to be...and be blessed by her joy, her charming smile, her adorable giggles, and the irresistable cuddles. There will be trials, but we keep moving forward.

I have endured more heartache than I would have ever believed was possible. I have a horrible habit of spending too much time thinking back, hurting through the painful moments all over again. Why did it happen? How could I have stopped it? Why didn't I see it every time? What did I not see that I don't want to miss the next time? What if there is a "next time"? How can I possibly recover? Will I ever trust again? Will I ever be able to function normally? Dr. Jeremiah had two points that spoke clearly to me...It's right to think back, but not right to GO back. It's right to look back, but not right to linger. Looking back, I can praise God for bringing me this far, but I must not linger there. I must move forward. Life may never be the same, and it may even be worse before it's better, but I know that HE will see me through. He simply asks me to move forward, trusting Him. The rest will fall into place according to His plan, the BEST plan.

Sunday, July 1, 2007

Pudding is yummy

We went to church at Grandpa J's church today. There was a whole bunch of music time, and I like music, so that was good. I sat with Grandma C today. She and Uncle Ethon had to work on my feeding stuff at church because it was being difficult for them.


After church, Mommy and me went with Grandma and Grandpa to Miss Cindy's house. And it is a really, really nice house. She had everyone from church over to swim and eat lots of yummy food, at least Mommy and Grandma C said it was yummy. Grandma C decided to try to give me some bananas, but they were different than my normal ones. This was called pudding, and I liked it alot. Grandma gave me enough to make my tummy full, and it was so yummy!


Everyone played games for a while in the evening, so I sat with Mommy so I could watch.


Then I got all sleepy and took a nap on Pop.
We finally left to go home about 9:30 tonight, so it's going to be very late when we get home!

Tuesday, June 26, 2007

Mommy report:Back to the tube

(Fair warning, possible TMI...I don't usually talk much about breastfeeding, but for the purpose of explaining the situation, it's necessary. I'm not all that comfortable with it, but maybe sharing will allow some good advice from some of you.)

So after an exciting discovery that Braska had gained 2 oz over the last 12 days, the afternoon yesterday started going downhill. She started acting a bit irritable and uncomfortable to start with. As I did my general analysis of the possible causes (yeah, I'm that way), I realized that previous to the 4 days that she's been sans tube, she had been consistently on it for 3 days, during which we'd filled her as full as possible. I had meant to have her weighed at the end of those three days, but I didn't get up to the dr's office to do it. That's important in that I think she probably had gained more at that point and is now down a little to the current 11 lbs 14 oz. I'm judging from how she fits in her clothes and her demeanor. The other factor is that while she's been nursing and taking solids somewhat better than normal the last few days, I have been worried and now feel sure that she still is not getting enough fluid since my milk supply is down.

Last evening while we were at Randy and Karen's she got quite fussy, and in a different way than usual. I started reviewing all the recent situations and was concerned that she was just plain hungry and possibly starting to feel dehydrated. She ate pretty well before bed, so I thought I'd address it further today. Two things changed that. First, I got up to pump at about 1:30 am (yes, after seven months...still pumping during the night...grrrrrr). It had been about 4 hours since the last time, instead of the usual 3 hour cycle during the day, but I only got about 40 cc or just over one ounce total. That's not a good sign, per past experience. This has happened the last couple nights, with the total decreasing each night. But she has been doing pretty well nursing during the day, seeming to get plenty each time, making plenty of loud swallowing sounds, which she didn't do previously, so I hoped that she was taking in enough. Then, she woke up at about 3:00 am. This is important because she doesn't wake up at night. And when I got her up, after I'd just pumped less than 2 hours before, she was anxious to nurse, so I let her try, and she seemed to be taking in some. That is, until she spit up everything she'd just had. She started throwing a fit, but made no tears. This was much the same as the last time she was dehydrated, although not as bad as then, thankfully. I woke up Muncher to walk with the screaming baby while I got things ready for the re-tubing. Once we got the tube in and food started, she calmed down and went back to sleep. I filled her full then and once more during the night, and this morning, although she's not back to her playful self, she's better and seems to be "juicing up" again.

So it's back on the tube for now... if it turns out to be more than a week or so, we'll have to walk the tough decision road toward the G-tube. In the meantime, I'm working to increase my supply to see if we can try it all over one more time. Here's hoping!