Operation Procrastination

This upcoming week brings forth lots of festivities, appointments, and holiday chaos.
Monday Bella and I have the pleasure of meeting a new mom to a daughter with Down syndrome in the area.  We'll be meeting at a local Starbucks and swapping stories of learning our child has Down syndrome.  Bella needs her medication refilled, so since we'll be closer to that side of town I arranged on Friday for her medication to be ready by tomorrow afternoon so that once we're done chatting it up with our new friends we can save on gas and roll over to the pharmacy.

We've decided Mondays are better for us budget-wise and quality-wise for grocery shopping,  so we'll be hitting up Safeway and Wegmans as well.  Looks like souvlaki's, a crudité platter for throughout the week healthy snacking, more chili (I'm obsessed as of late), eating our 5,000,000 sugar cookies, a gingerbread house and then I'll be making another apple pie for Miles to take to work.  We're out of bread, but because Monday is so jam packed I'll have to wait until Tuesday to make our 2 loaves of bread.

This week is a double therapy week for Bella.  She'll see both her physical therapist and educator.  We'll be looking into getting her private therapy from therapists we choose as provided by TriCare.  It'll depend on who we can find on whether or not I'll use them to supplement what Early Intervention (EI) provides or if we'll just forego the EI services altogether.  I remember her case manager back in Rapid City mentioning that TriCare provides outside therapy for special needs children as well.  I'll have to give her a call sometime this week as well.

Alongside that I've got my weekly appointment to attend.  I'm so thankful that my husband is willing to stay up "late" to watch Bella while I take care of my own mental needs :)

Since Miles' work schedule is wacky we're trying to fit in festivities and whatnot on his days off.  Our decorations are nearly finished, but we have a few more lights that go outside and we have yet to fully decorate the tree.  We have the tree up, the skirt down and the lights on the tree for night time "show 'n' glow" but we need to place the ornaments on.

Gifts need wrapped, ribboned and sent.  Cards need bought, signed and mailed.  Miles, Bella and I need to buy gifts yet for one another.  I have to desperately finish Secret Christmas Project #1 (which is frustrating me as of this moment, hence a blog update).  Many important medical phone calls to make and keep up with.  People to please.  People to pray for.  So much to do!  I feel like hyperboleandahalf.blogspot.com's "Why I'll Never Be An Adult" post.

Alright, enough procrastinating... time to work on Secret Christmas Project #1 until my eyes bleed.

We're Not In Kansas Anymore

On December 7th, the doctors found that Bella had coarctation of the aorta.  This needs immediate fixing and so shortly after hugging my parents goodbye around 10:00 AM, we found out the news.  We had been on our way to get some lunch when the doctor called us and said that we needed to skip lunch and come to the hospital right away.  Miles and I looked at each other and knew, "This is it." 

The doctor brought us back to his office and explained wonderfully what it means and that they needed to fly her out to Omaha, Nebraska that day.  Shortly after we ran to the nearest McDonalds, picked up some food, and sat in the NICU lobby waiting to say goodbye to Bella.  A nurse, Judy, had requested to be the accompanying nurse on Bella's flight to Omaha. 

The hospital gave us a bag of goodies from the Mended Hearts group in the city.  With it we were given $100 and a few gift cards as well as some other goodies.  We were so grateful. 

After they let us wash up and see Bella (who was completely out on morphine at this point), we headed straight home and literally threw things in one of our giant suitcases and left.  Unfortunately we didn't get to leave Rapid City until 6:00 PM.  By this time it was already dark, very snowy, very icy and just very cold.

Our three cats we entrusted to one of our good friends Katie.  It felt so weird to walk out the door without even kissing them goodbye!

We finally arrived in Omaha around 4:00 AM our time (Omaha is one hour ahead of Rapid City time).  First we drove to the Children's Hospital and got to see Bella who, again, was out on morphine.  We were told to be back at the hospital around 8:00-9:00 AM, as her surgery would be the second one of the day.  Her surgeon wasn't in then and would be in the morning... or, later on in the morning.

Fortunately we had reservations at a nearby Air Force base.  We found our way there and crashed for a few hours -- not nearly enough time for sleeping, but enough to get up and go see baby Bella before her two big surgeries.

After a briefing from her surgeon and the anaesthesiologist, Bella was whisked away to surgery after kissing her goodbye.  There was a private room designated for us as parents of a child undergoing cardiac surgery (as well as aorta).  With the dimmed lights, couch and recliners... you can expect that we slept the entire 4-5 hours she was in surgery!  (Well, I had nightmare after nightmare, so I'd get up, walk around and come back to the room.  Miles, however, was OUT). 

It seemed like forever, but her surgeon came in and told us everything went well.  We found out at this time that Bella had been in a HECK of a lot worse shape than anyone had ever led us to believe.  This wasn't surprising to us, to be honest.  We'd been telling everyone as much all along, but kept being reassured that she was just fine-and-dandy.  In any case, her surgeries went well and now it was just time to wait for her to recover.

Which is what we're doing.  In Omaha.  With very little to do, lol.  Today my husband wants to take me to the zoo ... and it's snowing.  I find this hilarious and extremely sweet at the same time.

Bella's progress will be daily updated via CaringBridge.org at her website.  Click here to be taken to it.

Nicu Day #7

Last night I absolutely crashed.  Well, to be honest, I had finally let myself accept that I was stressed and therefore "indulged" in some much needed "me" time.  Due to that, I never updated with an entry about Bella.  I, of course, feel super horrible but realize that there wasn't entirely too much to report on!

Today Bella turned 1-week-old!  In honor of this, I stuck her name embroidered pink bear wrist rattle on her crib.  Her what?  Yes, her crib.

Within the past 48 hours, Bella has been removed from her incubator, removed from her phototherapy, and is seemingly permanently on either oxygen or room air.  They attempted to bottle feed her yesterday.  Her first attempt had a successful suckling of 5 out of 45 mL.  After that she barely suckled anything out of the bottle, but she is indeed suckling. 

In case it's been too much change too soon, they didn't bottle feed her at all today.  She'd spat up four of her last feedings by the time we arrived today at noon, so they insisted we didn't jar her around by rocking her or passing her around too much. 

Miles started his Paternity Leave today, so he will have the next 10 days off.  We took full advantage of this by enrolling her in the military system, in TriCare (insurance) and soon we'll be going to the courthouse to get her birth certificate.  When we do things like this, I can't believe we have a baby!

Bella's pretty much at the end, I'd say.  When she finally decides to take to the bottle for all of her feedings (and keep them down!) they'll (probably) be sending her home.  If she's still not on room air, then she'll be sent home on oxygen... but that's okay with me!  I want my baby home.

Admittedly it gets harder every visit for me to walk away.  Coming home is depressing.  I love my husband, I love my cats, and I love our home... but coming home without Bella feels wrong and it's very depressing.  Although, I probably need to be here to at least shower and sleep ;-)

Welcoming Bella

As most of you may know, Miles and I had our little baby girl on November 24th at 2:04 PM here in Rapid City,  South Dakota.  She weighed in at 5lbs 11.9oz and was 17.5" long! 

I have been writing down everything I can remember from going to my OB/GYN appointment that day, up until the day after having her.  Today will be my third day here at the hospital, however, because I'm doing so well they plan on releasing me before spending another night here.

Tonight at 9:30 PM my parents are flying in.  I hope and pray they make it here safely, and am glad they're flying rather than driving.  Not only is the drive from Florida to South Dakota at minimum 2 days, but it's also the holiday and so dangerous! 

The entry I'm working on is, of course probably more for my sake and my desire of remembering everything I could or can.  If you do decide to read it, take heed because it is enormous LOL.

As for now I will just update you all on Bella's health.  Her online hospital announcement is provided to us for free by the hospital.  You can see it by clicking here, though it may take a few days before they add her :)

Bella's heart does not need immediate surgery as we'd been led to believe might be the case. (WOO-HOO!)  As per instructions of her cardiologist, Dr. Spangler, we just have to wait until her heart begins to fail.  We will have weekly appointments with him until she shows signs of beginning heart failure, so it won't be Miles and I at 3AM trying to get ahold of Dr. Spangler and driving to Omaha in craziness.

Right now she has a tube sliding down her throat (as you may see in her Facebook album "Bella Rose").  This allows for her to breathe through the proper canals.  For a while she had an oxygen hood on, but now has tubes that you or I might wear in a hospital to help her breathe. 

She's also been stuck with some sort of long needle that extends from her little, little bicep to her chest.  I don't remember the term for it. 

It's looking like it will be about 1 week minimum to wait to take her home with us.  I'm trying not to focus on that at all, because of course I wish I could take her home right now.  It doesn't help hearing the other mother's in their rooms with their crying babies!  I wish she could even sit next to my bed, but she has to be in the incubator.  Poor little dear!

The visiting hours stop from 7-8 AM, 11-12 PM, 7-8 PM and 11-12 AM as well.  I have about 20 minutes to go visit little Bella before the shift changes, so I think I'm going to go and be with her for a little bit.  That is, if I can walk! LOL

Pictures & the full story are on their way!  
 

What if God Was One of Us?

Yesterday a small box full of developmental toys for Bella came in, thanks to mama :)  They were adorable and unique toys that I love for her.  Of course I see things I want Bella to have, but I also like her having things a lot of other kids won't have.

Alongside the delivery was our Netflix movie #2: The Taking of Pelham 123.  Denzel Washington and John Travolta.  A sure fire wonderful movie, for sure.  Not.  The movie wasn't bad, but it didn't parallel with either of their other works.  It was entertaining, but it wasn't mind blowing.

Miles and I discussed more how much we want Bella to be, as a friend of mine says, "an external baby" right now.  Today marks the 35th week, so technically by next Wednesday she's allowed to enter the world. 

Today I was able to finally sell the Blackberry Storms we once used.  Someone offered us $200 for them both (including S&H) so we took the deal.  In this guys message on eBay, he gave me his phone number and asked for me to call him so he could guide me through.  Guide me through what?  I assumed he meant on how to make it "Buy It Now".  I never even insinuated I was going to sell outside of eBay.  No, no, no.  That's against policy in any case, plus it's for my own safety.

Soon after verifying my account through eBay I was able to use the option of "Buy It Now" and set both phones up for $100 each.  I'm not sure, but I think that somebody other than the guy bought them.  It's under a woman's name and a different account but to the same city.  In any case, I received the payment and shipped them off today.

Since I was already out and about a bit, I figured I'd stop by Walgreens and get some gift wrapping tape, paper and ribbon for Miles' birthday gifts that I bought yesterday. 

My aunt had sent my mother some products from a wonderful French line called Caudlié.  Mama didn't keep any of the products and sent them all back to my aunt, but I did keep one product for my night moisturizer.  It has worked like heaven in a bottle for me.  Alas, it's also $40 for a 1.5 oz bottle.  Hardly budget worthy, although I'd been granted permission from Miles.  Regardless of, I couldn't guilt-free order something so tiny for so much.  As I walked into Walgreens I figured I'd look at Olay's moisturizers since their face wash seems to have settled well with me.  Right next to them was a brand name called Merlot, made in the USA, out of the same ingredient that makes Caudlié so prestigious: grape seed oil.  For $15 I was able to get a huge jar of this wonderful moisturizer (with SPF 15) and not have to compromise on the ingredient that I think is doing it for my face.  Woo-hoo!

After perusing the gift wrap and ribbon, I had to hang up with mama (who'd I'd been on the phone with the whole time) since my battery was running out, and decided to find a cheaper tape than the $3.99 one hanging above the ribbon.  As I went to grab the $1.99 tape from the office supply area, a middle-aged man with a Vietnam Veteran hat approached me and asked when I was due.  He claimed then to have delivered many babies in his lifetime.  From there he kept me just outside the supply aisle for nearly an hour discussing how he formerly was a ballerina, he still wore tights (for his knees...?), wanted a church locally, how he was a 'nam Vet from the Army, how my husband should stay in the USAF for the rest of his entire life, how I shouldn't share a name with Britney Spears, how his kids haven't seen him for 18 years, where he lives, how he was looking for pastel chalks to begin painting again, how he played piano since he was 5 and countless other miscellaneous things mixed in with comments too creepy for my own taste.  In the midst of it all he threw his phone number and name at me so my husband or I could call him if we needed anything.  Yeah.  Right.

Once I was finally able to unrudely escape his presence, I ran to the car and shut the door, locked the doors and sped away in case he was somewhere writing down our car make, model and license.  He scared me.  And that's exactly what I text messaged to Miles.

Within a minute my husband called me to ask me what scared me and why and if I was okay.  LOL.  I told him about the creepy supposed veteran, and he asked me what he looked like and told me that I needed to learn how to dismiss myself in these types of situations.  He's right.  I told him I tried without being too blatantly rude, but Miles correctly pointed out that if he gave me the heeby-jeebies like he did, did it really matter if I was rude?

My question is this:  what if he was innocently just a lonely man looking for conversation from anyone?  What if he had no perverse intentions?  What if he was an angel?  What if God sent us together for that conversation?  What if God sent him to talk to me so I wouldn't be on a certain road at a certain time where I might crash and die?  What if I was sent to distract him from a situation that might cause his life to be in jeopardy?  What if it was God Himself? 

This is why I have a hard time dismissing myself rudely.  Unless the person is REALLY creepy and I don't think I can physically or mentally handle what it would take to leave, then I don't see a reason to be rude.  I was in a public setting, parked in the first row of the lot, and many of the workers had seen us outside the aisle -- to whom I'd also made eye contact with several times. 

You have to admit... it's pretty sad we live in a world that when you're approached, you're more likely to think the person insane, perverted or psychotic than you are to think they're lonely.

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.

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 Goodreads.com, 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...