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'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 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.