Wednesday, September 30, 2009

The Presence of Happiness

Weather has quickly changed over from summer to autumn, bringing South Dakotan winds to ensure an extra crispy day. The forecast shows possible snow later in the week, though I doubt that will happen I look forward to the first snow of the season.

According to weather and the circumstances of the day, the presence of happiness shouldn't be expected but fortunately I feel quite chipper. Although I'd much rather forgo the needed duties of the day and replace them with a nap (my eyelids are heavy as I type), the presence of happiness keeps me motivated enough to do what needs to be done.

Friday I received a text message later on in the day from my husband stating that Kim, the (former) secretary of their office, had turned in her 2007 Honda Civic and the dealership was now asking about $15k for it. He'd decided we were going to go straight after work, go buy it (if they gave us fair trade in for the Mini Coooper) and voila. Alas, we pull into the dealership and I spot Kim in the distance. Once we approach closer and notice that the Civic was no where in sight, our pitiful observation was quickly confirmed when Kim said, "They sold it yesterday!" (I couldn't help but wonder at the fact that they had only just put the car up on their website that day despite having sold it the previous).

Pulling out of the lot with a business card in hand of the fellow who'd dealt with Kim and her husband, we left rather disappointed. Miles' determination to find a Civic even just to look at led us to a handful of dealership lots. Lots that looked well kempt. Lots that looked straight out of the ghetto. We weren't able to find anything. Finally, perhaps just to soothe over the disappointment, he said we could drive over to the Chevrolet dealership where the (insert singing angels) 2010 Camaro shined brightly on its pedestal in the lot.

As we pulled off the exit for the Chevy dealership, I noticed a bunch of cars lined up to the right of us at the Black Hills Harley Davidson center. Couldn't hurt, so we wandered over there. We did find one or two Civics; none that met our expectations nor our financial wishes. As Miles took one last drive around the lot, I noticed a car in charcoal (or dark grey if you prefer) and asked Miles what it was. Laughing, he answered, "That's a Malibu, honey." He'd been pushing the Malibu on me for some time; pushing in a jovial way after I'd initially seen it on the website and said it was ugly. Up close and in person made this car far superior to the poor photograph that had previously closed that avenue in my mind.

We got out of the Mini (which I'd run through the car wash and vacuumed out in hopes that the Honda dealer would offer us good cash for it), took a look at it, and I stated that I liked it. Soon enough a man came around the corner asking if we'd like to drive it. This man with little-to-no-personality handed over the keys and let me drive it down the highway to the next exit where I became immediately impressed with the interior as much as I had been struck by the exterior.

After giving us a brief second or two to talk in whispers, Miles asked if I liked it. Fervently I nodded to which he pursued me with, "Should we talk numbers then?" Again, I nodded happily.

It all lay in the hands of their offer to trade in the Mini Cooper. My beloved 2005 Mini Cooper. My first car. My first bout of true independence (except, of course, financially lol).

We sat down outside in the windy sunset as Nate (the salesman) went in to discuss with his boss what trade in value would they offer us. Admittedly it felt weird. Just down right weird. Here I am with my husband, a baby in my stomach (who protested against the cold with stern rib kickings) and we're about to buy our first family car. When Nate came out and wrote down $11k, just $150 over what we owed, we both breathed (slightly...) a sigh of relief and began the dealings of purchasing our first family car.

Miles was, as expected, nervous and worried. He tried to forewarn me that we might have to get up and walk away if they offered a penny less than what we owed on the Mini. With much agreeance on my part, I tried to reassure him that even though I was excited I was not for going upside down and making phenomenally huge payments on a used car (even if it was only one year old) like many of his co-workers have done.

From the offer, we accepted, and we headed on over to the actual Chevrolet dealership where we sat down and had all the mumbo-jumbo taken care of. From here on out, Nate pretty much was just there but another man took us into his office and that's where we signed our lives away. Even if I was oblivious (or maybe I just don't get as nervous??...)

We walked out of the dealership about an hour and a half after closing as owners of our 2009 Malibu in charcoal :) For those who don't know, I persisted that whatever car we get - it must be in charcoal. Or "at least" black. Miles let me hug and kiss (literally, yes) my Mini Cooper goodbye. We drove home happy as clams... although I think Miles was high, lol. His adrenaline was nearly frightening for the rest of the night, but he finally calmed himself down, lol.

We got a great interest rate for 72 months. I'm convinced that 72 months is FINE since we're going to be keeping this car. Miles let me get my interior/exterior protection package for an added $600. Our payments are exactly the same as when we were paying the Mini - so nothing changes for us financially.

Little did I know this would spark an OCD in Miles that I did not know existed!

Over the weekend we spent almost $200 on car care products and detailed its entirety over Saturday and Sunday. I'd say the accumulated hours it took to detail it would round out to 15. Yes, 15 HOURS. The only reason why it took us longer than the typical 3-4 hour car wash and wax was due to the fact that Miles had read on some car-obsessed-forum that you can Scratch-X the entire car (instead of, as directed on the bottle, per scratched area). Scratch-Xing an entire car... even if it's a golf cart sized car (which, the Malibu is not)... takes hours. It takes shoulder muscle. Arm muscle. Patience. Virtue. Discipline. It's freakin' hard-work!

(Realize please that my husband does not force this work upon me, but as his wife who is physically capable (albeit, physically limited) I felt it was a part of being a good friend to him, and a good wife, to help him out in his new found love. It's a way to spend time together -- even if it is daunting and takes 15 hours. )

Amidst the insane-car-detailing-endeavor we also cleaned the garage of 90% of the garbage, debris and/or junk that accumulated over the year. With that we tore up the guest bedroom to create it into, you guessed it, a nursery.

Mentally I cannot handle not being able to help someone. I've always been quite physically capable, especially given my stature. Whenever there's furniture to be moved - I've never needed help. It was extremely, extremely hard for me to watch my very-capable-and-not-whining-about-it husband move the computer desk upstairs, the crib from the garage and the baby's dresser from the garage. I could do absolutely nothing. All I could do was warn him of an oncoming collision with a cat. Open a door. Suggest a position. Watch. I wanted to die, lol. I love my baby, and I love the whole process of being in love, getting married, having a baby... but when pregnancy limits me to such extremes I find myself begging God for time to fly faster.

So the poor dear moved everything out of the room that wasn't Bella's, moved everything that is hers in and allowed me to fiddle and bring in all things under 20 lbs. Of course this led to me learning what 20 lbs. actually was, and to my GREAT dismay it was WAY less than I'd expected. He handed me both boy cats (who're both a bit over 10 lbs) and I realized I'd been carrying and moving things around 50 lbs. my entire pregnancy. Whenever he'd see me carrying one too many books, I could expect to see my husband dart at me with Superman speed and rush them out of my arms. My aching-for-some-poundage arms.

Currently our house is a complete wreck. I've done most everything I physically am allowed to do (although I KNOW I could move a few items, I think Miles would lovingly reprimand me if they were moved) and have to wait for Miles to help me with the rest. After the crib is put together and the door on the dresser (the latter came all put together)... then I can start doing "woman's work". Cleaning. Baby laundry. Decorating. These are things I don't mind, but goodness there's less personal gratification when you can't do it all yourself, lol. Although I'm extremely happy that my husband is being such a huge part in this.

Today I had two appointments. Miles went with me despite the fact that his formerly understanding boss is now not so understanding. It's unfortunate that Miles has to go to these things with apprehension because he might go back to work to an angry boss. (Who in fact knows he shouldn't, as a boss and a human being, hold a grudge against Miles for being there during important appointments -- but he can't help himself because it's his nature). In any case...

We met with the pediatric cardiologist (Dr.Spangler) who said it's most likely AV which is very common amongst people with Down syndrome. Fortunately I will be able to deliver here in Rapid City. She will need open heart surgery shortly after she is born (2-4 weeks) in Omaha, Nebraska. He offered for us to go to Florida, although he was never impressed with any children's surgeons for cardiology there, but we insisted that we wanted what was best for her -- that alll family can come to her/us if they feel the desire to. It will take approximately 10 days, so Miles will have to take about 2 weeks off of work. We're not sure how that'll really go with his new bosses, but he's going to finangle it anyway since... well, you know... his baby will be having open heart surgery. Woe to their weary souls if they should put a boulder in Miles way. I will make their lives a living Hell. I promise.

AV is not life-threatening although it does need to be taken care of. Though he doubts this is her case, there is a form of AV that is very minor that she'd be able to wait to have surgery by the age of 4. However, after looking (and re-looking) at the fetal echocardiogram, he doesn't think this is her case. Just to be sure he'd like to see us back in a month for another echocardiogram.

Straight after we ran into my OB/GYN's office. We waited and had a normal check-up (which felt weird!) We listened to Bella's heart again, asked Dr.Buehner some questions and were sent on our merry way. I'm not diabetic but I am slightly anemic, so they gave me a prescription for some iron supplements. (This could explain a LOT, lol). I expressed, on behalf of Miles, concern over my menstrual-like cramping. Dr.Buehner offered to have a look at my cervix just for reassurance, but insisted that this is fairly normal (since I am 30 weeks pregnant) and as long as the contractions (I didn't know these were contractions!) weren't on any schedule (like 4-5 per hour), followed by bleeding, change in my discharge or anything of that sort then I would be fine. Miles doesn't like me in pain (I think) because if Bella kicks my ribs (which she seems to like to do a lot lately) and I make an involuntary responsive sound, he'll ask if I'm okay and hasn't been satisfied with my reassurances that this is all normal, lol.

Then I asked the important questions (because if she's going to come early, well, she's going to come early and no one can stop her lol). Firstly, I asked my burning question: what type of Down syndrome does she have? Did the lab results specify whether it was "classic" trisomy 21, mosaicism or translocation? There's a need to know for me because mosaicism would mean she could almost be "normal". Translocation on the other hand is slightly worse than the other two and also means that mother or father are carriers; that it was genetics and not happenchance. She has "classic" trisomy 21.

Am I now at higher risk (1:100) for having children with Down syndrome in the future? Is there any testing we should go through before even thinking of conceiving again? What are our chances? Well, according to him, he's never heard of the higher risk though since he knows I've read of it he's going to look into it. He says he's only heard of the risk elevating when it's translocation Down syndrome because of it being genetically affective, not just chance. In our case, Miles' sperm just happened to attach to the possibly 1:1000's of eggs that had an extra chromosome. So really, it is all my fault ;-) He will look deeper into it, but he thinks the chances are better for our next child(ren) to be "normal". He also said we were the ideal parents for a child with Down syndrome and that made me feel so blessed!

Since I'm now in the last stretch of pregnancy (woo-hoo!!!!) I'll be having bi-weekly check-ups from now on. This goes along with my monthly maternity specialist appointments and any extra appointments Dr.Spangler will want. Now that we're at the bi-weekly appointment status, I'm panicking! The nursery has begun it's process of being put together but now I'm panicked, lol. I realize that I could have this baby any day (if she decides to be a booger and come home early). The car seat is not yet put in (thank GOD we found that car; that truly was a blessing). We haven't baby-proofed the house ... though a newborn can't do much more than eat, sleep, and poop. We haven't ordered her swing yet, or bassinet. Yes... now I feel like, "THE BABY IS COMING! THE BABY IS COMING!" and my head is falling off.

To help with expenses for the future baby and just to help stabilize us a bit more we have cut back. We grit our teeth and downgraded to basic cable; though we still have preferred internet. This brings us down about $40-$50/month. We both have Blackberry Storms with Verizon Wireless. Being in South Dakota, we think it's best to keep Verizon because they literally have the best coverage... and out here in BFE, well, you can't find a lot of cell phone companies that cover even our city. Yeah. So, we bought "new" cell phones via eBay. We both are getting Razrs (I used to have one). As soon as they come in we're downgrading to a normal cell plan that won't have us paying $200/month anymore. We were told by Verizon that if you have ANY Blackberry phone that you're required to have a plan with a data package and guess what? The data package is the most expensive part. We barely touch the 700 minutes to call non-Verizon members because most people we know are on VW as well. I have requested the unlimited text messaging package since it's my lifeline. Yes, I could and can get on without it but an extra $5-$10 is not going to kill us whereas limiting my texts might kill me, lol.

We finally got out of the stupid, stupid, stupid contract with Viking magazine. They held Miles liable for $75/month for magazines he DIDN'T order. Apparently while he was in Georgia (when we met) training, they sent him a notice to his dormitory address here in South Dakota stating that if he didn't contact them they'd auto-renew his subscription. Well, since his training took 4-5 months... yeah. We'll still be getting these crap magazines for another year, but it's all paid off now. There's going to be almost $400 extra monthly... which will more than cover us for forumla and diapers. Between Katie, my mother, his parents, and the rest of our family... we're pretty set in clothing lol.

Amidst the chaotic changes, the debut of a newborn baby (with Down syndrome) on the horizon, and life rapidly moving... the presence of happiness seems inept and yet even imminent.

Wednesday, September 23, 2009

Maternity Specialists

This is the entry in which I revealed Bella has Down syndrome to my Facebook friends list. I'm posting it here as well because it contains the update for the appointment I went to yesterday afternoon.

Last Thursday my doctor called me around 1.00 PM with the results to the amniocentesis.

Little Bella does have Down syndrome. Her lab results showed three of the chromosome-21, which is make-up of someone with Down syndrome.

We cannot ever be sure of the severity of her syndrome, at least not prenatally, so that is to be determined as she grows up.

After the conversation I had with my doctor (whom I think expected me to fall into pieces on the phone but I never did), I of course wept. It's very sad, initially. I was shocked, confused, disappointed, angry and very hurt. The chances of someone at my age (22) to have a baby with Down syndrome is 1:1500.

Yes, I cried intermittently for a few days. I can't help but think the tears were mostly shock, because since Sunday I've been really okay. Miles has been a big help in making sure I'm mentally okay as well, though I think he half expects me to rip at the seams any moment, lol. I'm seriously okay :)

Of course we're both worried for her health (because with Down syndrome can come an array of health issues starting from birth). We're worried for her future and a little uneasy about what it's going to be like to raise a child who will need more time and patience than normal. We're looking forward to having her in our lives, and really can't wait to see her... but there will now always be worries.

My appointment with the maternity specialists from Sioux Falls was yesterday where they did an extensive ultrasound. The areas of concern were her heart, umbilical cord and her skull. We waited for an hour and a half before we even got into our appointment because they only come to Rapid City once a month. Being specialists, every patient they see needs some sort of extensive appointment and thus everybody was waaaaay behind. Next time I must remember to bring a book, my DS or crocheting because that was just awful!

It was really nice to see her again :) She has gotten so much bigger in a month, too! They estimate her gestational weight to be 2.5 lbs. I can't remember off the top of my head, but I believe that is where she's supposed to be. I had been very worried since I've only put on 1 lb. since my last visit (but I was wearing heavier clothes this time too since it's dropped to 49 degrees). In any case, it seems she's just stealing everything I eat :) Which I'm fine with.

So what did the specialist say?

Heart: She will still have to prenatally be seen by a pediatric cardiologist so as to further determine the severity of her heart defect (yes, there is one). He, the maternity specialist, saw a heart deficiency in the wall of her heart. To him it doesn't look as if it will need operation as soon as she is born (which is a common enough thing for babies with Down syndrome). She will, however, have to have surgery most likely between the age of 6 weeks to 3 months on her heart to correct this deficiency so that she can, of course, function. The surgery will have to take place in Denver, Minneapolis, Omaha or somewhere else. I can't remember the other city, but that is where she will have to go for her surgery.

Head: The swelling that was seen on her head is excess fluid around the ventricles in her head. These lead into the spine and usually flush out to the bottom of the spine, but as with most babies with Down syndrome... it doesn't work properly so there is excess. However, he said she only has a little bit... so this is good :) Nothing needs to be done here.

Other: There really is no "other"... since prenatally it's kind of hard to diagnose much but other than her heart and the swelling on her head there is no other concern right now.

The chances of her heart condition being severe are slim, but in the case that they are severe I will have to deliver her in one of the cities where she can be operated on ASAP. Otherwise, if she doesn't need immediate operation, then we can deliver her here in Rapid City. Both Miles and I hope that is the case, but we'll have to wait to hear what the pediatric cardiologist thinks.

I will be getting a call today from the maternity specialists who're scheduling the appointment with the pediatric cardiologist this morning. I will most likely be scheduled for Monday or Tuesday. Alongside my typical check-ups with my OB/GYN, I will monthly be seeing the maternity specialists as well. I'm not sure how often I'll be seeing the pediatric cardiologist.

I've already read one of the highest rated books on babies with Down syndrome :) (Haha, amazing what amount of content you can consume and retain when it's really important to you). My doctor will be hooking us up locally with different support groups and such that will help us by nearly mentoring since these will be parents with children with Down syndrome as well. At this juncture, we're going to need all the information and help we can get!

Both of our families have been very supportive, and we both are very excited for when she is born :)

From here on out I will be doing lots of updates on my appointments with the various doctors. Mostly if there's new or, God forbid, startling information. If you wish to be un-tagged for the rest of the updates, let me know. I won't be offended :)

Friday, September 18, 2009

Our New World

Read at your own pace, as this is quite a long entry.

Yesterday around 1.30 PM I was sitting at the coffee table looking at, text messaging with my friend Katie and Miles, and settling that I needed to shower since I’d just finished a huge lunch. Within five minutes of Katie asking me when I’d hear about the results, I received a call from Dr. Buehner’s office.

As soon as I heard his voice on the other end, I knew that the amnio results had come in. Any other time the nurse usually calls. I’d called again that morning because I’d been cramping again, and not just when eating or walking and thought that he should know since I had a potential high-risk pregnancy and/or an unhealthy baby.

For posterity sake, I want to just write it as I remember the conversation going after the typical “hello” and “is this Brittany”.

Dr. Buehner: Well, your amnio results came back today.
Brittany: Okay...
Dr. Buehner: Unfortunately, they came back positive for Down syndrome. I’m sorry to tell you that. They found three of the chromosome 21 in the DNA. I’m really sorry about this.
Brittany: Really? Are you serious?
Dr. Buehner: I’m sorry... yes, it’s positive. Do you want to also know the baby’s gender?
-- at this time, I’m thinking to myself that we already know... but apparently I can make a 1 in 1500 statistic, I’m sure I could make the statistic that they were originally wrong about my baby’s gender too.--
Brittany: Yeah, well, sure.
Dr. Buehner: It is a girl.
Brittany: Well that’s good because we planned on that.
Dr. Buehner: Are you alright?
--I’m guessing he was expecting me to be in tears by now, and for some reason I was able to maintain a real genuine calmness.--
Brittany: Well, I don’t know that I’m alright. This kind of sucks, y’know... but, it’s just a new world.
Dr. Buehner: Yes... I’m really sorry. Do you have a pediatrician already picked out?
Brittany: It’s okay. You didn’t do this. It’s no one’s fault. And yes and no. Being with the military we usually are just assigned a pediatrician here on base, but given the circumstances I’m sure that if she needs a specialist or specialists then they’ll allow us that off base. I’m not sure how that’s all going to work out.
Dr. Buehner: I will have some information for you then when you see me next. Your next appointment is on the 22nd with the Maternity Specialists though, correct?
Brittany: Yeah. I see you on the 29th.
Dr. Buehner: Okay, yeah. I will get a bunch of information for you together. We’re going to make you an appointment with a pediatric cardiologist as well so as to better determine what to do for the baby once she arrives or if her heart condition is compatible with life. Do either you or your husband have any experience with being around or raising a baby with Down syndrome?
Brittany: Uhh absolutely not. We are both entirely clueless. This is going to be extremely new for the both of us.
Dr. Buehner: Then I’ll have more information regarding that as well when you see the specialists on Tuesday. They’ll be able to help you out there as well. The last baby I delivered with Down syndrome, her mother is a nurse here and she is involved in a local group. .... --at this time, I remember zoning out and staring at the edge of my laptop. I don’t remember the names of groups. Different words swooshed in and out of absorbency, but I don’t quite remember. I think, given his next line, he realized I was overwhelmed and slightly in shock-- But we will have all that ready for you too when you come here. Are you sure you’re okay? I’m really very sorry for the both of you. Babies with Down syndrome, and children, are usually the sweetest, generous and kindest people you’ll ever meet. They still play and interact very well, and there’s many things you can do to get involved with your baby and help her develop at a somewhat normal rate.
Brittany: Really, it’s okay. It’ll be a learning process for sure. I’m sure by the time I see you I’ll have fifty-million questions after nights on the internet researching, and days reading books.
Dr. Buehner: That’s fine.
Dr. Buehner: Now your cramping... is it continuous throughout the day? Do you get them every hour? Is there any bleeding along with it?
Brittany: I don’t know if it’s hourly, I’d say I cramp about 5-6 times a day though. They don’t progressively get worse, and they happen whether I’m sitting, standing or actively moving around. I haven’t seen any blood at all, so no.
Dr. Buehner: Okay well then I’d consider that fairly normal. Now if you see they do become hourly, or they intensify in pain with or without bleeding, call the office or if after hours go straight to the E.R.
Brittany: Okay, I will.
Dr. Buehner: Again, I’m really sorry. We’ll see you two soon.

Of course straight after we hung up I went into mad tears. There’s a long range of emotions I can’t even begin to explain and I don’t think it’s possible to empathize until you have had a child or even conceived one. It was news I was prepared to hear because, in truth, something inside me told me all was not well with Bella. No matter what anybody said, or what good wishes were tithed, in my heart of hearts I knew Bella was not okay. Ironic enough I was depressed just the day prior to the phone call... almost as if my intuition knew. Mother’s intuition kicking in early? Maybe.

Immediately I text messaged my mother, father and Miles with, “Dr. Buehner called. It’s not good news.” I didn’t know who was in any position to hear the news, so I let them decide by calling me back or texting back. My dad was in the middle of a store (he evaluates them for his job), so he wasn’t able to hear until later. My mother, of course, called me straight away. Miles called me in the middle of my phone call with my mom. That was probably good because when my mom called I answered (knowing that if I didn’t, she’d think I jumped off a cliff) and I was sobbing too hard to speak coherently. By the time I’d gotten it out, I stopped weeping so terribly and then Miles called so I was able to tell him just through a leaky nose and broken heart.

Miles didn’t ask to come home. He already knows I’d say something along the lines of, “That’s not going to change anything. You can stay at work.” When he hung up though, he told his co-workers and at their persistent encouragement and his superintendent’s insistence, Miles came home at 2.30.

I don’t know if I want someone near me or not when I am upset, but when I saw him come through the front door I was so happy. I kind of wish he had wanted to come home and had planned on it anyway, but I will take it that his co-workers (who usually back stab him) encouraged and insisted he go home to be with me.

When he sat down on the love seat, I think he half expected me to go ballistic. Yes it’d been obvious I had been crying and upset, but when he came home I felt okay. I felt supported just because he was physically here. He admitted he was afraid for my well-being; that he expected (and maybe still does) for me to lose it and breakdown. Even if I did breakdown, there’s nothing I would do to harm myself or the baby. I’m by no means one who would cut themselves. I’m not going to go drink (though admittedly I could REALLY do with some wine at the very least; tequila preferably). I’m not going to smoke. I’ve never done drugs (that bout of pot-smoking doesn’t really count since it wasn’t for the joy of drug usage). I’m not going to jump off a cliff or get in a car wreck. So I’m not quite sure what Miles and my mom expect from me, lol... but they expect me to go insane.

There’s times I cry. It comes when I feel fine, and am walking about with hope. Most of the time it comes without thought or any sort of visual provocation. Yes I can tear up at the sight of a healthy child an a mother who is wheeling them around unaware that they’re extremely lucky. Yes I can tear up watching a YouTube video of a proud mom who taught her DS 2-year-old 50 American Sign Language signs -- and that’s his only form of communication. There’s no doubt to visual provocations that make me tear up... that’s expected. I don’t expect the random tears when I’m driving and have NO thoughts in my head. Or like this morning when I woke up and just cuddled with the cats and Miles and felt tears I didn’t know were there roll down my cheeks. It’s like crying without actually crying...

About an hour after he came home he called his mom. I’d already told him that other than my mom, I couldn’t yet handle letting people know. As soon as I think about saying it out loud, then I go into sobs. His mother was in the middle of a piano lesson with a student, and I feel bad because I hadn’t even thought of it. She was noticeably shaken, Miles said, and I feel bad that we left her to fend with this emotional news in the midst of her typical Thursday afternoon of lessons. We promised to have a chat later when Jim, Miles’ dad, came home.

Miles and I took off. We went and got a Starbucks (indulgence #1), looked at Who’s Lobby for possible Warhammer gear that’s due out (indulgence #2) and then to Borders to see if they had any Down syndrome books for me to read (indulgence #3). At Borders Miles received a call from Russell, his superintendent, saying that they were working on getting him out of his PCS (aka “move”) and deployment.

(BACKSTORY: When Miles told Russell, Russell had him close his office door and sat down with him. He then asked Miles if we were at all spiritual or religious and Miles answered affirmatively. Russell then proceeded to talk with Miles, ask if I was alright, said he’d keep all of us in his own prayers, and told him to immediately leave and not worry about finishing for the day. He asked if we desired to stay in South Dakota or move to England. Miles admitted we’re not nuts about South Dakota, but moving to England so far away from family and potentially away from medical facilities able to supplement our special needs child would be stressful. If we don’t move to England -- Miles doesn’t deploy [well, deploy in April... but he’ll have to deploy sometime of course]. Russell wanted to make sure of this so that he could begin the process for Miles since it’s gotta be signed off by the big wigs of OSI.)

I think he mainly was calling to just update Miles and make sure we were both okay. Miles assured him we were okay (given the circumstances) and were just trying to research and decompress. Shortly after that phone call, Cynthia called back (his mother) but Miles let her know we were in Borders (he didn’t really want to sit and discuss this in public) and I’m sure she understood that was for me. Most everyone knows Borders (or, a substantial bookstore rather) is where I go to if I need to decompress. He let her know we’d call her back when we got home.

Feeling slightly rushed, and slightly pathetic, I urged him for us to just get going. He wasn’t too happy about being there, but I saw he wanted to let me do what I wanted. We looked all over for anything on babies with Down syndrome and they had nothing. Just a bunch of books on autism, ADD/ADHD, misbehavior and nutritional guides.

Once we got home he called his parents. They’re, of course, very sorry for us and while he was on the phone with them (I think I can only muster to really discuss this with Miles, as I do begin to cry when I even talk to my mom - hence my asking him to talk to people on our behalf) I was online researching what books were available and then, of course, the syndrome itself.

I’m shocked to see so little information via books out there. I think the latest one I saw was published (or maybe it was reprinted then) in 1999. The book I’m ordering (Borders and the used bookstore didn’t carry it) is called Babies with Down syndrome: A New Parents Guide and is raved about by other parents who were in my position before. Haha, then again, there’s no other new-parent-guide-to-having-a-baby-with-D
own-syndrome book to compare it with.

I’ve researched a bunch. Like... a TON. I have so many questions. For the doctor. For myself. For God (not in a negative way). For Miles. For our families. For our friends.

Since I’m 22, the statistical chance of me ever having a baby with Down syndrome is 1 in 1500. Astronomical at my age in other words. It is not caused by anything either... it happens straight at conception... so.... yeah. I don’t understand a lot. I took prenatal vitamins BEFORE I was pregnant. I made Miles take a multi-vitamin for me. We both began to work-out prior to conception. We drank in moderation (though we never were hard drinkers on a regular basis). Granted, we did smoke. But research insists there aren’t environmental factors that affect the possibilities. In any case, since we already have one child with Down syndrome we’re going to have to get genetic counseling for all future pregnancies. Before we attempt conceiving again, I want us both tested... because it might change our minds. If one of us is a carrier and it wasn’t just a chance event (which most cases are chance), then we’ll have to discuss if we want to risk that again. We both want more children, and preferably (am I bad for saying this?...) children without chromosomal abnormalities.

I want to know what kind of Down syndrome she has. Is it the normal trisomy 21? Is it mosaicism (I would prefer this, but it’s very rare)? Is it translocation? Should we consider banking her cord blood since DS children are prone to leukemia in the first years? Since there’s research showing DS children becoming phenomenally normal (almost DS free) with stem cell therapy?

Since it’s nearly official that we’re not moving to England, and he’s not deploying, we’re going to move off base and get our own house. I’m not sure when that’ll take place - before or after baby - but we need to get our own place without the stress of attached neighbors, the base watching how often we water or mow our grass, and we need more rooms now. We will have family staying more with us and we will need one more bedroom. I’m glad Miles decided this already too!

Mom and dad said they’d help us sell my Mini since no one is showing interest and winter is fast approaching for South Dakota. Being in Florida, and particularly a wealthier part of Jacksonville (where all the kids are spoiled), they’re more likely to get a sale out of it. What they’d do is buy it from us and use the money they get as “pay off”. That way we can get our Honda Civic and get ready for baby Bella without the hassle of car payments.

How is Miles? I’m not sure, to be honest. He wants to be a rock for me so he won’t show too much emotion. His emotion is only decipherable by what words he chooses to say. I know he’s upset. I know he’s disappointed. I’m going to wager he feels the same things I do. We both feel blessed nonetheless. We both feel that God gave us this baby for a reason and that it’s very much a part of His plan. I think he wants to cry, and I wish he would. Whether it’s in front of me or not, I think he needs to let it out because I feel better when I do -- lol. He’s being a good husband though. He put the dishes away yesterday and made dinner. He humored me by taking me to Borders. He came home. He’s keeping in touch. He’s (this one is important to me) letting me tell him a million facts about Down syndrome and asking a million more questions. I’m glad he has patience with me, because when news like this comes... I have about every question you could ever think of.

So this was God’s plan all along. Those dreams I had at 6 of being a mom... always knowing and planning my future careers around the fact that I wanted to be married with kids (plural, yes... kids)... He knew He’d give my future husband, Miles, and I a baby with Down syndrome. There’s something to it, I know this... and I feel it... and I just want to know what her purpose is in this world because obviously she very much has one. I’m curious how this will all play out.

Even though I’m not devastated (don’t get me wrong, I’m terribly confused... sometimes angry... very sad for Bella’s future) I can’t sleep. I barely slept a wink last night and thus am entirely exhausted today. My last wisdom tooth also decided to begin coming in, so my mouth is also in pain, lol. Not to mention since I wasn’t sleeping, I could feel the cramps last night. I think Bella knew mama was upset because she kicked a LOT.

My poor baby Bella...

Wednesday, September 16, 2009

When Neighbors Attack

I’ve been sitting in bed reading “Sense & Sensibility” as per my husband’s request for my latest classic endeavor, put it down at the third chapter and decided it was time for a nap since I couldn’t focus my eyes on the page anymore. After I call him and ask if he advises me to put the garage door up or not, he decided it’d not be a good idea. This is due to our neighbor allowing her two toddlers (as she holds a newborn... she’s gotta be ≥ 25) and two gigantic dogs to literally run the streets, run our yard, run in our garage, ring our doorbell and every other neighbors doorbell, throw pasta noodles on the driveway (we have a “shared” driveway), take our hose on our porch and snake it off into our yard.... I could go on. In any case, last night we discovered that the old dresser we have stashed in the garage was knocked over by either the kids (I dread not because they’re only 3- and 2-years-old) or the dogs and it laid on my car. Fortunately for the neighbor-lady there were no dents or scratches because I was quite armed and ready to ring her doorbell and make her admit to her rudeness.

Miles’ pet peeve is my leaving the screen door locked. When he’s gone I typically lock everything. Screen doors. Bolted doors. Bathroom doors. Everything is locked because I am paranoid, I am pregnant and I feel helpless. He gets very angry with me when I accidentally leave the screen door locked when he is home. So, to be sure I don’t tick him off, I got up out of bed (sans pants because I’m a germaphobe and believe pants worn outdoors should not be worn in bed) and went to the front door. I heard some noises and thought it may be the other neighbor (our front doors are only perhaps a foot apart with a dinky wood separator for “privacy”) so I just quickly opened the bolted door and find myself pregnant and pantless in front of a stranger in his Air Force uniform holding a long metal rod. I attempt to act normal (because it is, right?...) and he informs me our neighbors complained that they couldn’t sit outside because there is a wasp nest at our door. Forgetting I have no pants on (because really, pregnant ladies at almost 30 weeks ARE NOT SEXY) I immediately go into mean drive. I then ask him if there is a metal rod for neighbors who like to smoke at MY front door and then close my door.

(I'm sorry, even though I smoked I never did it near someone's door, someone's car, or someone's windows. It's RUDE. It's rude when smokers stay near business doors and force everyone to smell the lingering poison. It's rude to stand at MY door when you have YOUR OWN DOOR and smoke because guess what? That smoke then goes into my house and I CAN SMELL IT IN MY HOUSE.)

Now I’m going back to bed with another heap of cheese.

Attack of Cheese & Other Pre-Nap Musings

After dropping off Miles’ lunch, I went to Safeway to pick up some peanut butter, bread and Cheerios. I came out with $57 worth of groceries... most of it cheese, lol. The other day I bought a package of muenster cheese and ate it all in less than a day. I’ve been craving cheese like no tomorrow. So I bought a monterey jack and a muenster cheese cube (so much cheaper, and more product) and then some swiss, though the latter is for Miles’ lunch sandwiches. I picked up some frozen 5-cheese ravioli thanks to hearing so much about [info]butterbobbin’s ravioli making. Alas I haven’t the energy or the patience to make homemade ravioli... as the last time I attempted pasta dough I ended up taking 5 hours to clean the kitchen. I don’t think I made dough. It was more like glue-that-sticks-everywhere-and-you-can’t-e

Still some menstrual-like cramping today. Mama thinks that if I still have it tomorrow (I really don’t think it’ll go away) that I need to call the nurse and tell her again. I don’t think I’ll walk with Miles today, even though I really, really, really, really want to. It’s just that after our walk yesterday I noticed I cramped that evening even more. I don’t mean just being achy and sore in my hips and such, but the menstrual-like cramps came back with a slight vengeance.

Since I feel so exhausted (contribution: all night heartburn and menstrual-like cramps), bawled my eyes out twice today, and should probably be taking it easy anyway... I think I’m going to allow myself the luxury of a nap/sit and crochet in bed, and just finish the ironing tonight when Miles is in the shower. There’s not that much to do, weird enough. It does have to be done though... he hasn’t any more dress shirts that he could wear that could pass as part of a “suit”. *rolls eyes* His new boss and superintendent are ridiculously clueless. Apparently they had 2 staff meetings today. And these are the people who told Miles to go to a time management class. HA!!

I’m thinking about permanently moving over to This seems more convenient for Miles to be able to read (when he, at his leisure, does)... I just don’t want my parents or his parents to be able to read it. I still only want the audience to be... select. Well, strangers I don’t so much mind. People I know? I mind big time. I don’t know how to solve this mini-crisis.

Tuesday, September 15, 2009

Two More Days to Pray

Impatience and anxiety took over and after getting the “go-ahead” from both my mama and husband, I decided to put a call in to the doctor’s office this morning around 10.30 and see if the amnio results had come in. I didn’t anticipate getting a phone call earlier than noon, yet on the drive to errands I kept the radio off so I could hear the static that comes before the ringing on my cell phone.

I’d driven to Kohls to pick Miles up a new belt. His two new bosses have declared that everyone must wear a suit every day. I, personally, think this is wildly stupid but I won’t argue and will find this as a great excuse to dapper up my hubby :) So I went to buy him a belt that fit better and ran into Kohls’ wonderful clearance rack that held dress pants in his size for $25. Too good to pass up, I threw those over my shoulder with the belt and left.

When I dropped off his belt, lunch and a Starbucks I made him try on the belt to make sure it fit okay. Apparently he and I misjudged the old belts size because it was the same length! After returning to Kohls I received a phone call from my doctor’s nurse saying that it will take until about Friday to get the results in. She said she noticed that it’s usually two weeks on the dot that the results come in, so that would be this upcoming Friday.

Miles’ co-worker, Travis, and his wife, Katie, have offered to take us out to dinner on the day we receive the results regardless of what they are. I would love to double with them and their 6-week-old, Audrie, but I do not want them paying for our dinner. I feel so funny because Katie has given me nearly $200 worth of books (given, as in... she doesn’t want them back) and she has a crap load of blankets, clothes and a baby play pen she’s giving us for Bella. They’re so very generous with us, and I know she has a job so they’re 50% richer than us (lol) but still... I feel so... inadequate. I’m so used to being able to flourish people with help, money or gifts... and with baby coming we’re pretty tight. I mean, we can splurge on a gift for them.. but no where near equal to what they’ve given us! *sigh* I’m grateful, nonetheless. We feel pretty lonely all the way up here in South Dakota.

On second note though, the nurse seemed a little worried that I’m having menstrual like cramping and last night some pressure in my pelvic area. It felt quite like the day before my period comes, when you feel “heavy”. I read up on this feeling on the internet and my pregnancy books, and none of them seemed to onset any worry... as I don’t feel pushing as if the baby’s head is appearing. I would definitely feel that! LOL. But she said if it continues for more than a week again, then I need to call back and let her know. And she also had no help for my hip other than Tylenol (WHICH DOESNT WORK FOR ME) and said if it progressively worsens or keeps being such a pain for me (I’m almost immobile in the mornings) then she’ll have my doctor set up a physical therapy appointment for me. Ugh.

So that’s the “news” so far.

Monday, September 14, 2009

True and Rare Beauty

There are some people in this world -- a very rare few -- that when you look at them, you immediately know and cannot suppress the knowledge that you were never truly beautiful.

Most of the time we go about and could pick out of a line-up of people “pretty” people. It’s when you see these true and rare beauties that we are nearly humbled to realize we never knew real beauty.

P.S. I hate waking up to hear Jonny Diaz's "More Beautiful You" because it's depressing. The fact that this is as good as I get is VERY sad, lol, and waking up to that thought (thanks to his song on the radio) is not the best start to my day.

Friday, September 11, 2009

Womb Worry: Bella's Heart

I would like to go into so many details about life, and tell you that I have to come up with a new way to journal so Miles can see it as well (as has been his request) but right now I’m just summoning all of my friends for prayers.

We went to Bella’s third ultrasound appointment. This was held because we weren’t scheduled by the front desk for a 3D ultrasound for some reason and that’s done by a technician, not my doctor. So Miles and I waited a month and saw Bella again, and in 3D form. (I’ll post pictures soon!)

Apparently during the ultrasound, which was also used to get more precise measurements of her head, her limbs, and a better look at her heart, there was a noticed problem by our doctor. He called me that day to say that he saw something in the ultrasound that worried him.

Now, there are some factors that could just be genetics. Neither Miles nor I are tall people with lanky limbs. Miles’ baby photos, as well as mine, show us with little pug-like noses. (Don’t be confused by the honker I have now. I mistakenly hurt my nose in 1st grade and just never got it fixed, lol). In any case... the doctor had told us that he noticed her arms and legs were not growing at a rate that was normal. Her nose, he couldn’t find the bridge in (but when I post the pictures, Miles and I both disagree on this because she very obviously has a bridge -- according to research we’ve done on other babies and ultrasounds). Her head, however, has small swellings around it. She doesn’t show the obvious signs for Downs Syndrome or any other chromosomal disorder, but he ordered an amniocentesis for me the next morning. The doctor also said that her heart was not fully developed, and by this point should be. After what he’d said to me, it sounds (if it isn’t indeed chromosomal) like Ventricular Septal Defect (VSD). Basically, in laymans terms, she has a hole in her heart. However, out of all the fetal congenital heart defects, this one is manageable and something I’d be blessed to hear him say she has.

That Friday, the next morning, Miles went in with me and I had my amniocentesis. >.< I don't prefer to ever have that done again, and I still disagree. I think local anaesthesia would have helped me but the doctor told me that it would just be more painful than the actual amnio. Pfft. So that was done and now it's a week later and we're waiting for the results to come back.

The doctor is attempting, and will eventually (soon), get me into some obstetrical specialists that deal with high risk pregnancies. After the results of the amnio (which Miles and I are confident aren't going to come back with a chromosomal defect), and possibly after testing with the specialists (they only come in the office once a month), I may have to visit a pediatric cardiologist so that further testing and consulting can be done. :-/

In short, the baby is not fine. Of course I was and still am quite upset. I flew out to Jacksonville the next day to visit my mom and dad for about a week. Yesterday afternoon was when I came back home. This had been a planned trip for about two months, and initially I did NOT want to go. I had weird cramping and uncomfortable, dull pain in my abdomen the night after the amniocentesis but it went completely away the next morning (which, according to the doctor and internet research, it should have or else there'd be a problem) and I went on my kinda-merry-way to Jacksonville.

Mom and I spent a ton of money, there's no doubt about that. Of course, she spent a significantly higher amount than I did, lol. I came back with two new suitcases (for the England move) both filled to the brim with clothing, toys, and necessities for baby Bella.

I was lucky to run into a proper maternity store as well, and splurged some $90 on winter maternity clothes. Miles made me feel okay with that since he said this won't be our last child... and that made me happy :)

In any case, i must admit it was emotionally hard to actually buy things for Bella. If the condition she has (still unknown) is severe, she may not survive in utero let alone past 1 year after birth. That is worst case scenario, of course. It's just very confusing for me because she moves constantly. I'm not worried about lack of movement. My belly has grown within the week I was gone -- noticeable even to Miles. I'm finding myself in the third trimester regimen of "side affects" (which is basically first trimester ALL over again). Everything seems so... okay. And then I think, there's that very real and even small possibility that I could actually never hold her. She could possibly only live 1 year.

We've both decided that, in the case that the doctor might ask us whether we'd like to abort the baby or not in a severe case of her defect/diseases, we would rather her be born and be with her while she has time. I'm very glad to have a husband who agrees as whole heartedly as I do on this, otherwise I can't imagine even that mental spin.

So please do pray. As often as you possibly can. Not even for me, as I’ve been holding up fine (which is scary and makes me feel like a bad mom). Pray for baby Bella’s heart, and that God be with her.

On that note, I’m going to prep Miles’ lunch and run off to do my gestational diabetes testing.