Thursday, November 29, 2007

Better late than...later

I'm due for a post. It's time to put up some kind of witty story or interesting idea or thought-provoking question. But I don't have it. I mean, not right now anyway. I spent a long time putting up info on Braska's blog, and I don't have anything left. Maybe it's because I'm all congested in my nose and breathing with my mouth open and I just want to go to bed. Maybe not...but either way, I'm not worth much for the moment. So I'll spare you further rambling...
here's looking forward to a fresh start tomorrow morning.

Monday, November 26, 2007

On one hand...

We're ending day 6 of a 7-day family/friends tour of Missouri. There are alot of paradoxical elements to family visits.

On one hand it's great to visit and kind of relax, but on the other hand, we're ready to be home and in our own space.

On one hand it's nice to get away, spend time in the car together, and listen to some good books on CD, but on the other hand, after quite a bit of time, it'll be nice to not have a trip over 15 minutes for the next week or so. To recap...Weds: Our home to my parents'--5 1/2 hours. Thurs and Fri: No driving!! Saturday: My parents' to friends in Columbia-- 2 1/2 hours, then friends to M's parents' place--2 hours. Making a triangle in East Central Missouri...priceless. Tomorrow we'll go 35 minutes to Children's, whole day of visits, same trip back here, then 3 hours home.

On one hand it's nice to let the hosts do their thing, but on the other hand, we tend to like things our own way.

On one hand it's great that Braska will sleep well in a Pack N Play if it's quiet and dark, but on the other hand those conditions are not always easy to come by, sometimes downright impossible.

On one hand it's nice to catch up with family, but on the other hand, sometimes you wish you were still out of date and blissfully in the dark.

On one hand it's great to have lots of food around and goodies a'plenty, but on the other hand, I'm gonna have to put in some serious treadmill time to make up for that a'plenty.

On one hand it's nice to just have the four of us (me, M, Braska, and Belle) as a little family capsule moving around together visiting, away from some distractions, but on the other hand...ok, I got nothing on that one. I just plain like it. My husband would probably have something to add there, though.

On one hand we like the fun, games, goofiness, teasing, and playful spirit of lots of family, but on the other hand, we really like quiet.

On one hand we're very appreciative for our parents for contributing to who we are, but on the other hand, sometimes it's so very painful to watch them and see glimpses of ourselves in situations, conversations, and attitudes. On one hand that's no fun, but on the other hand, we always come home with new resolve not to repeat or carry on certain traits. It happens with both sides. Some things are funny as we elbow each other and smile, and some are just hard to watch. We talk about how we don't want that attitude, that "gene," or that social tick. And we ask, can we overcome? The cool thing is that we're succeeding in many ways. Hopefully, Braska will have a shorter list of things to overcome. All we can aim for is improvement.

On one hand we love to spend time with our families, but on the other hand we try hard not to make it alot of time. Everyone comes out better that way.

All in all, it's been a pretty good visit. Better than many. I call it a successful trip.

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...

Tuesday, November 20, 2007

The story: The big day...or so we thought

One year ago today...

It doesn't seem possible. It's been a year. I've been putting off writing this because I wasn't sure what all it would give way to in my brain. So we'll see... if you are up to reading the story, you might want to grab a hot cocoa or something and get comfy.

November 20 has always been my parents' anniversary. That's what the date meant to me. Until it was decided about my 37th week that it would be a good day to induce me. My doctor was going to be out of town for Thanksgiving, and I didn't care to roll the dice on who else in the group I might get stuck with if I waited it out. Plus, I'm a planner, so I loved knowing when it would all take place. I'll spare you the icky details, but I was already "progressing" a week before, so the doctor felt like I would go quickly through the process. I figured we'd show up in the morning, have a baby by dinner, nice and easy.

We arrived early that morning, checked in, got all hooked up to everything, and Dr. N came in to break my water. Let's just leave that whole thing at this....totally the grossest hour followed. I then got my epidural about 90 minutes later, still not having a twinge of pain. I hadn't had any contractions leading up to this, so I thought I was in super good shape. I was more scared of the epidural than I was of anything else, in all honesty. I hate the idea of needles of any kind, and I just didn't see how I could possibly stand this procedure. Thankfully, it was quite bearable, just a slight prick with the first topical numbing shot, then nothing else after that. I felt some weird things, but no pain or discomfort. Then I laid back and waited.


My husband posted to his blog a couple times during the day. They came to check on things now and then, but largely the next few hours were ok and uneventful. We watched the little monitors to see her heart rate and when the contractions would hit, since I wasn't feeling anything.

At some point early afternoon, maybe it was around the 3pm shift change, our nurses changed. The great ones who we started with left and we got a new one. Actually, it was a new one and a newer one. One was training the other. Never a good thing, I now know. The trainER was kind of rude and abrupt, but the trainEE was nice. Unfortunately, the trainEE didn't know to check on things and the trainER didn't double check her. How do I know?? Well, you see, there was a point just after they came on that my little pump of wonder drugs beeped, along with the fluids I was getting being empty at the same time. The trainEE came in to change them or whatever, and then she went on her way. Over the next hour or so, I started having more pain. I was feeling the contractions and they were getting worse and worse. Someone would say that it was just getting "closer to time" and that I would feel them a bit more as it got time to deliver. I tried to tell them that something was wrong. I bet I said that 100 times, pleading with someone to check on something. My husband was there and trying to calm me, my mother had arrived and was doing the same. Finally, the anesthesiologist--a different one than the one who placed my epidural--came to check the placement and make sure it was all good. He looked it over and confirmed that it was ok. Since I was still having so much pain, he gave me a bolus of meds into the line for the epidural. I felt the cold in my back, but I never felt the pain decrease. This happened twice, with no pain relief in between his two visits over a couple hours. But I wasn't progressing in dilation, so something was up.

At the height of pain, I was a yelling mess. I remember it, but I'm sure my husband could tell it better. I went into the "I can't do this!" and "Make it stop!" phases, and I kept telling them that this wasn't how it should be. I was without pain and fine, watching the strong contractions on the monitor, then a couple hours later, I'm screaming through ones that weren't as strong...something was wrong, and I was mad at everyone for not believing me. Finally, my husband went out to the hall and said someone had to do something right then. By then, it was sometime after 8 pm, I think, and there were new nurses again, good ones. They called the anesthesiologist--this time, the third trip, it was the guy who had done the placement to begin with. He noted that the catheter was out of place, probably because of my writhing around in pain. He said they'd have to do it all over again, starting fresh. That would have been fine, but I couldn't hardly sit still like you must do while they do the procedure. It was torture, to put it simply. And when they got my second epidural in, and started the meds, they noticed that the trainEE from earlier had turned off my pump that was giving me the epidural meds. Yeah, turned it off. And the trainER hadn't double checked to notice it. Even when I was telling them over and over that something was wrong. They apparently never looked at that.

So once I got the second epidural, it was only about 5 minutes until I was peachy again. My husband tells it well of me going from crazy insane in pain to calm and cool in minutes. I was talking to my friend on the phone soon after and watching the super strong contractions on the monitor without feeling a thing. Drugs are good....I highly recommend them! After having been with and without, DO the epidural!!!

The rest of the night was spent waiting, progressing slowly, and trying to get some rest. The family was all there, in the waiting room, not wanting to go to the hotel or go home because they thought it would be soon. But Braska had her own plans...

Dr. N came to check on me and found that she was turned the wrong way. Not breech, but head facing my back instead of my front. This meant that she kind of got stuck, and they said that until she turned herself, it would be a very slow thing. That if she tried to come out that way, it would be hard and painful. Good. Just what I wanted.

So we continued to wait. I slept on and off. Most of the time I just sat there in the room with the lights off, alone. My husband had gone out to the waiting room to hang with the fam. I didn't want everyone in the room with me. I don't know how people can have like 10 people, or even 3 or 4 in there to "watch." Ewwwww...I didn't even want my mom in there, but after the chaos, when it came time to deliver, it was good that she was there.

That takes us up to midnight...when I was frustrated at my little bundle who messed up my plans. She was supposed to arrive on 11/20, but she didn't cooperate. Little did I know that was only the beginning of my plans going out the window...

Tune in for the rest of the story tomorrow...the day she actually decided to join us.

Saturday, November 17, 2007

Secret blogger gift!

Today my mailman brought me a package! That's always fun. And it was even better because the return address said "Secret Blogger"!

Shelley from Life as Household 6 got my name! She sent me some dandy Christmas kitchen items and *drum roll please* Godiva chocolates! Woo Hoo! Thanks Shelley!!!

Friday, November 16, 2007

Simulpost: Time to DO something

For those who are skimming and in a hurry, read this... if you are one who is planning to get Braska something for Christmas (I realize that's not all of you, of course) please grant us this wish... FIRST donate to one or more of these Angels, then if you choose, feel free to wrap up something for her. But I would largely prefer that you spend your money on them...they need every penny, and we simply don't "need" for anything. If this means that Braska has no "actual gifts" under the tree, then so be it! And the same goes for gifts for me! Let us know who you donated to, so that we may add them personally to our prayer list of special friends. Here's why...

Lately, I've had an especially sensitive heart toward the kids of the world, especially disabled, who are in such poor conditions in institutions and orphanages. This is a new thing for me, not new that I care, but that it's been bothering me so much. Braska and I have been praying every single night for these children, that God would comfort them and somehow not let them experience the pain and emotional neglect that is inevitable. I've gotten where I can't hardly think about it without crying and just wrapping Braska up in big hugs. No child should have to live without interaction and human contact. It's making me have a whole new view on adoption, even though I've always had a heart for it.

The stories are here if you want to familiarize yourself with some of the problems. It's heartbreaking, and I've been asking God to show me where I can start to actually DO something. I am tired of just hearing, crying, and feeling helpless. So this is where we start.

Others are DOING something as well...Meredith and her family at Cornish Adoption Journey is right now waiting the call to get the time that they will fly and pick up precious Aleksa, and there are other adopting, too. Michelle at DownBlogger had a great post and a call to action as well. Several others of you have posted to spread the word.

For me, this is the first thing that popped in my mind. If you were going to pick up a cute outfit for Braska that is $15, then please send that $15 to Reece's Rainbow's Angels. If you want to get the outfit too, then go right ahead. :o) I'm not trying to take the gifting joy from you, but I want to share a more important joy with those who desperately need it.

At least take the time to go look at them, see that they're kids too. Consider donating as a family, DS network, Sunday School class, small group, or neighborhood. They want no more than to be loved, and every child deserves that...every child.

Thursday, November 15, 2007

Simulpost: All done

(I don't have time to write two posts...so for those who check both, sorry to be repetitive.)

Wow, that was quick. I laid her on the bed, walked out, played a little solitaire on my phone because they said I wouldn't have time to even log on to my computer, and they came to get me in about 9 minutes. That's quick. They didn't even give her ANYTHING, just pulled the PEG out (that HAS to hurt!) and then put the new button in. I'll have pics later, but for now, we're good and grabbing a bite to eat before we swing by Grandma C's house on the way home.

They said she screamed when they held her down and such, but by the time I returned to the room, she was calm and happy and not even red-faced. She is such a tough cookie! Thank you, God, for such a tough little girl!

Wednesday, November 14, 2007

Tube out, button in

Tomorrow morning I'll pack up little Nebraska Larae and we'll head to St. Louis Children's. She has her "switch" procedure at noon, at least that's what I call it. They'll take the Corpak out and put in a Nutriport. The good part is that there will be no more tube on the outside, nothing for her to grab and tug on whenever she gets the chance. This morning she got it the best yet, and I thought she was going to pop it out. I just knew we'd made it all this way and the morning before it's switched, she'd get it out of there and we'd be headed to the ER. But she was caught in the act and all was saved.

Pray for safe travel, successful procedure, no complications, and that Mommy and baby don't go crazy in the car for 3 hours down and then back again. Aw, darn! Just remembered that I forgot to pick up a couple books on CD for the drive. Grrrrrrrr

Have a good one...

Monday, November 12, 2007

Gift certificates, anyone?

I have 4 gift certificates, each for $25 off a purchase at CanvasOnDemand or GreatBigCanvas. My sister got us a nifty canvas print a few months ago, so I guess they want more of my business. It is a really super neat gift idea, I admit, but I'm happy to pass them on to whoever if you're interested. Just let me know in the comments and send me an email (in my profile) with your snail mail address. First four get 'em...ready...GO!

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.

Sunday, November 4, 2007

Blog breather

I suppose I wore myself out keeping up with 31 for 21. Or that's the excuse I'm going with for now, anyway. I still plan to finish The Story, but not tonight. I've got old pictures I'd like to share for the humor value, and I've got some ponderings that I'm curious to have some other perspectives on, so we'll get to that soon.

For now, I need to finish the laundry, feed the child, and go to bed. Sweet dreams to all.