We are finally back home from our long road trip to and around Florida. Miles has taken a few more days off of work so that we can have some private family time together since we rarely ever get exclusive vacation time to ourselves anymore. I'm so appreciative of this time with him.
Bella got to meet her great-grandparents down in Fort Meade. They were delighted to see her and watch her bobble along everywhere. She was herself most of the time initially and baby-gabbed away at them and everyone else who'd listen ;-) Unfortunately, the 12-hour drive from Virginia to Jacksonville, then the 4 hour drive to Fort Meade, followed by a full day at Busch Gardens in Tampa, then another big visit/birthday party/Thanksgiving afternoon feast in Fort Meade then a drive back to Jacksonville really quite wore her out. We'd watched her decline little by little, and hoped we could get her some rest eventually but it was very hard. Dumbly we overbooked ourselves and Bella's presence and cost Bella a good 2nd birthday and robbed her of feeling well. By the time we hit Jacksonville the second time, to share her birthday and the Thanksgiving day celebration, she ended up throwing up a little at dinner and then the next day she threw up in the morning. Poor Bella was just plain exhausted :-( As parents we felt awful! We now know better, but we hate that it was at the cost of a pleasant 2nd birthday for our little wonder.
Regardless, everyone was so pleased we could make it down to Florida for Thanksgiving. Seeing as we've been in South Dakota for the past 4 years and haven't spent any holidays with any of our families, I think everyone appreciated our efforts.
We are now just celebrating the rest of November peacefully here at home. Today we went out and took care of some pricey car maintenance (yuck!), went to the post office to send off a letter to my friend in South Africa, stopped by Starbucks for an indulgence and stared at pretty Christmasy things in Michaels. Whilst waiting for our car to be finished in the parking lot of the dealer we counted our budget for Christmas decorations. We won't be able to afford a 2nd tree this year as we'd hoped for, but instead we'll be able to slightly concentrate on the outside decorations that we "desperately need".
It's night fall already, despite being 5:40, and Miles is diligently working on a paper for school. I'll play with Bella a bit tonight then clean up the kitchen and tidy the living room (she sure can make quite a mess!) and once she is cleaned up and sent to bed then I hope to work on two of my Secret Christmas Projects tonight.
One thing to mention though. I haven't personally had a terrific Monday in ages. Miles, I'm sure, hasn't either. When we checked our postal mail after our trip, we discovered a letter from our medical insurance. Bella was given permission to see a pediatric cardiologist at Bethesda (where she already has her primary pediatric cardiologist). We were livid. Let me explain...
After our last appointment with her cardiologist we were very disappointed with their care for Bella. The ultrasound (u/s) technician was rather rough with the device on Bella, making Bella cry and therefore making it very hard to see one part of her heart/aorta that is already slightly difficult to get a good look at anyway. Despite me having to pin Bella's four limbs down with the weight of my arms and body (and still trying to keep her calm), Bella was NOT having it. The cardiologist was less than honest with my husband and I the first trip in there. He'd claimed a heart catheterization was an unncessarily invasive first option for Bella in November/December as suggested by her previous pediatric cardiologists from Omaha Children's. At the time of hearing this we were relieved because, really, who wants to put their child through that?! If it needs to be done, okay we will do it... but if the resutls can be accurately determined in a less-invasive fashion then we're voting for that. He'd led us to believe by saying to us that "...a heart catheterization measures the pressures and we can do that by other testing. Of course, if by those other tests we can't accurately measure the pressures we need then we need to discuss a heart catheterization, but really it's not necessary to jump to a catheterization first. So, let's exhaust the other tests before we do that." We wearily felt relieved by these words. After another appointment, unaccompanied by my husband, her doctor begins to discuss a possible heart catheterization. O_O Why? All we did was a typical and routine ultrasound of which your technician didn't even perform properly or kindly. Now she needs a heart catheterization but you're "...not worried" that anything is wrong with Bella. No. Not cool. So, we're seeking a second opinion from the pediatric cardiologists at Children's of D.C. whom we were originally referred to by her Omaha cardiologists who, like us, have no faith in Bethesda's pediatric specialists. Military doctors are (sorry in advance to whomever this may offend) absolute crap. They're great for combat, but certainly not for children and not for pregnant women either. I've yet to hear something good from a woman who's been forced to give birth by the car of a MTF.
The blessing? I know, I know. The blessing is that TriCare (medical insurance) called us this morning right as Miles was dialing them (to yell at them lol) and I explained that we had wanted a second opinion from a specific doctor from a specific location and we were instead given a referral to a doctor from the same institution we were having concerns with. Without missing a beat, the lady on the other end of the line quickly realized Bella's pediatric office made a mistake and went readily to correct it and put through a request for a second opinion.
Second blessing, thank You dear Lord, was that we received word from USAA that Miles won his debate, so to speak, with the other insurance company from that small fender-bender/wreck he was in the day before we left South Dakota. That's a good $500+ back in our pockets from the repairs! Yay! What a perfect time of year to receive that kind of reimbursement!
Hope everyone had a great Thanksgiving holiday and vacation! Pictures will soon be posted on Facebook and Picasa!
EDIT: Bella update! Over the holiday Bella began standing on her own from the middle of the floor (no help from furniture!) as well as drinking solely from a sippy cup!
Monday, November 28, 2011
Saturday, November 12, 2011
Being Neighborly
Over the past few months I've run across our neighbors who help sandwich our little townhome in with a few others. Sometimes they wave, sometimes they smile. We don't know each other at all and I wouldn't even know it if their mail were in my box by accident unless I looked at the house number.
For the most part they've been quiet. Once in a while I'd hear some major vocal fighting that led me to feeling awkward so after a quick prayer for their resolution, I'd put on the t.v. to drown out their bickerfest.
Today I noticed a new man walking into the townhome. He, unlike his friends, waved AND said, "Hello!" Thinking nothing of it, I continued battling the War of the Groceries into our tri-level home. After another load of bags were dropped off at the foyer for my husband's retrieving service, said New Man went into the neighboring townhome with a cooler. Again, I thought nothing of it.
Maybe they got new speakers. Maybe their friend is a veteran or active duty member. Maybe they are having some sort of weird sex orgy. I don't know. All I do know is that start at 7:30 PM my living room wall has been throbbing. They were in and out of their deck (which is a great stage to my couch, literally two feet from their deck), carrying on loudly and I didn't mind thinking it'd end by 11ish. Music was playing loudly. After a while I figured it had to be a movie because it would drone in and out without real rhythym.
It's 2 AM. There is still throbbing. It's not loud enough by far to wake anyone in the house. Bella fell asleep without a hitch, but here I am, sleepy and now additionally witchy because that throbbing is just enough to be annoying.
It's. 2. In. The. Morning.
My husband has offered me the advice to go over there and knock on their door and politely ask them to turn it down (why not off? It's 2 AM!) but at this point, I am scared that whatever comes out of my mouth will sound more, "What is WRONG with you!? It's 2 AM! You don't even have the decency to wave or smile but you sure as hell don't mind making my walls throb!" rather than, "Oh hello, good evening. Would you ever so mind turning down your beautiful sound system for the benefit of a few hours sleep for me? Thank you kindly."
For the most part they've been quiet. Once in a while I'd hear some major vocal fighting that led me to feeling awkward so after a quick prayer for their resolution, I'd put on the t.v. to drown out their bickerfest.
Today I noticed a new man walking into the townhome. He, unlike his friends, waved AND said, "Hello!" Thinking nothing of it, I continued battling the War of the Groceries into our tri-level home. After another load of bags were dropped off at the foyer for my husband's retrieving service, said New Man went into the neighboring townhome with a cooler. Again, I thought nothing of it.
Maybe they got new speakers. Maybe their friend is a veteran or active duty member. Maybe they are having some sort of weird sex orgy. I don't know. All I do know is that start at 7:30 PM my living room wall has been throbbing. They were in and out of their deck (which is a great stage to my couch, literally two feet from their deck), carrying on loudly and I didn't mind thinking it'd end by 11ish. Music was playing loudly. After a while I figured it had to be a movie because it would drone in and out without real rhythym.
It's 2 AM. There is still throbbing. It's not loud enough by far to wake anyone in the house. Bella fell asleep without a hitch, but here I am, sleepy and now additionally witchy because that throbbing is just enough to be annoying.
It's. 2. In. The. Morning.
My husband has offered me the advice to go over there and knock on their door and politely ask them to turn it down (why not off? It's 2 AM!) but at this point, I am scared that whatever comes out of my mouth will sound more, "What is WRONG with you!? It's 2 AM! You don't even have the decency to wave or smile but you sure as hell don't mind making my walls throb!" rather than, "Oh hello, good evening. Would you ever so mind turning down your beautiful sound system for the benefit of a few hours sleep for me? Thank you kindly."
Friday, November 11, 2011
From SoDak to NoVa
Since the last post, Bella and the family have uprooted from kind, compassionate and warm (hearted, not weathered!) South Dakota to Northern Virginia. We are back on the east coast, baby!
Bella is a lot better than she was in February 2010. She will be 2-years-old this month and is almost walking :) We dearly and sorely miss her old OT (occupational therapist) in Rapid City. As a family we've noticed a decline in the developmental care of children who're disabled, particularly those with Down syndrome, in our area. Bella will meet with her new PT on Monday, and we pray to God that all goes well there. She has one more year with the NoVa Early Intervention services until she is in the preschool program for developmental help. By then she will not receive one-on-one care/assistance, and we really want this last year to count. She is doing well, but we never want to expect less of her due to her Down syndrome. For some reason this seems to throw people off, which frankly concerns us all.
My husband is back in school on his way to finishing his degree. I'm so happy for him and I think he is very happy for himself too. As for myself, well, I am still "just" a stay-at-home-mom. I'm finding a new passion in cooking however. Thanks to shows like "Anthony Bourdain: No Reservations" I am now transferring my wanderlust to the culinary arts. All of our meals these past few weeks have been solely Mediterranean based. I'm thinking of beginning a culinary adventures blog for my own sake/benefit, but am unsure of it's real amusement for others. There's got to be a crowd that loves to dabble in the culinary arts for the fun of it though...
Thanksgiving is quickly coming our way and we will be headed down to Florida to see our families for the first time in over a year. We've seen both our parents and M's brother and our sister-in-law since they visited us as soon as we moved closer to Florida, but our visit to Florida will bring us to meet M's grandparents and his aunt, uncle and a few cousins. Bella will get to meet her great-grandparents for the first time.
Bella may be meeting her first DS friend tomorrow for coffee, or, well, in their case milk. If there's one thing the local Early Intervention services have been good for, it's the references for local families with children with Down syndrome.
Bella is a lot better than she was in February 2010. She will be 2-years-old this month and is almost walking :) We dearly and sorely miss her old OT (occupational therapist) in Rapid City. As a family we've noticed a decline in the developmental care of children who're disabled, particularly those with Down syndrome, in our area. Bella will meet with her new PT on Monday, and we pray to God that all goes well there. She has one more year with the NoVa Early Intervention services until she is in the preschool program for developmental help. By then she will not receive one-on-one care/assistance, and we really want this last year to count. She is doing well, but we never want to expect less of her due to her Down syndrome. For some reason this seems to throw people off, which frankly concerns us all.
My husband is back in school on his way to finishing his degree. I'm so happy for him and I think he is very happy for himself too. As for myself, well, I am still "just" a stay-at-home-mom. I'm finding a new passion in cooking however. Thanks to shows like "Anthony Bourdain: No Reservations" I am now transferring my wanderlust to the culinary arts. All of our meals these past few weeks have been solely Mediterranean based. I'm thinking of beginning a culinary adventures blog for my own sake/benefit, but am unsure of it's real amusement for others. There's got to be a crowd that loves to dabble in the culinary arts for the fun of it though...
Thanksgiving is quickly coming our way and we will be headed down to Florida to see our families for the first time in over a year. We've seen both our parents and M's brother and our sister-in-law since they visited us as soon as we moved closer to Florida, but our visit to Florida will bring us to meet M's grandparents and his aunt, uncle and a few cousins. Bella will get to meet her great-grandparents for the first time.
Bella may be meeting her first DS friend tomorrow for coffee, or, well, in their case milk. If there's one thing the local Early Intervention services have been good for, it's the references for local families with children with Down syndrome.
Monday, February 22, 2010
Piccies
tired after lots of belly time!
Staring up at me when she was admitted into the hospital for the first time since coming back home.
The cats LOVE her :)
Back in Business
Long time no see.
Bella is now almost 3-months-old, weighs in now at 8.5 lbs and has grown to 19.5" in length. She's begun taking to the bottle (currently I stop her continual feed for 1 hour prior to bottling, attempt to give her at least 21mL's of formula and begin her feed again).
I don't know what I thought, but the first year with baby played out differently in my head. We are ecstatic to have her home (even in those terrible, psychotic moments when she screams her head off from 1AM-5AM). That is the thing though, we haven't had her home but only for a bit over two weeks.
When she first came back home, she stayed with us for six days before having to be admitted into the hospital. I had given her a bath and noticed at the end that her head was really warm, so I took her temperature. When it read 99.4 I stopped even looking and began packing up to take her to the E.R. Sounds silly, I'm sure, but when your child is still recovering from two open heart surgeries and the doctors tell you how dangerous it will be if she ever is to get infected, catch a cold or the flu you panic and you run to the E.R. at 10:30PM. I didn't get out until 3AM, but ended up visiting her as sleeping in a very tiny cubicle wasn't possible for me.
After a week in the hospital, she got out and once more six days later she was re-admitted.
Miles is selling his car ('99 V6 Camaro, anyone?) so he can buy a new one, which leaves Bella and I to gladly chauffeur daddy to work every morning. We had just plunked her into her car seat, hooked up her travel oxygen and looked up to see that she was blue. Literally blue. Our baby was comparable to a Smurf. Panic and blood rushed through my veins and I grabbed her out of the car seat, banged on her back like they showed me in Omaha, and began blowing on her face. Luckily only after a few hits on her back and breaths on her face, she came back. Our baby's heart stopped beating. She had momentarily died. In our house, under our care. You can never imagine the immense panic that went through me.
For that she was sent back to the hospital, this time admitted into the PICU. She'd had nothing wrong with her in regards to white blood cell count, RSV, infection.... It was a fluke and we've been further advised to just keep her home and if that happens again only call back if she does it consecutively. O_O
We've put in for a Compassionate move from the Air Force so that, God forbid, if something morbid happens that we're within at least 1-2 hours of a specialized children's hospital. Unfortunately we aren't able to state our preferences, so we have the possibility of moving to Omaha, NE (NO!!!); San Antonio, TX (pretty please?); Denver, CO (please!!); California; Minneapolis, MN (uuhh). Of all the places, I think I will be so mad if we're sent back to Omaha. I really, really, really did not like the place and as I got to know her ego-centric specialists, I lost faith in their abilities quickly. Omaha, in my opinion, is a small town that has expanded into a mediocre sized city way too fast. They seem to all be in over their heads.
Plus, I've never seen so many people run red lights in my life until I stayed in Omaha. NEVER. They drive like lunatics.
It's nearing opening time for the doctor's office and I get to call in to let them know she's been running a consistent fever of 99.5 - 103.0 for almost 12 hours. Even on antibiotics. I'm not sure if the fever is related to her g-tube being infected (I have NO idea how that has happened since I clean the darned thing twice a day) or if my baby has an infection that no one has, or will, figure out. I'm worried for her.
Bella is now almost 3-months-old, weighs in now at 8.5 lbs and has grown to 19.5" in length. She's begun taking to the bottle (currently I stop her continual feed for 1 hour prior to bottling, attempt to give her at least 21mL's of formula and begin her feed again).
I don't know what I thought, but the first year with baby played out differently in my head. We are ecstatic to have her home (even in those terrible, psychotic moments when she screams her head off from 1AM-5AM). That is the thing though, we haven't had her home but only for a bit over two weeks.
When she first came back home, she stayed with us for six days before having to be admitted into the hospital. I had given her a bath and noticed at the end that her head was really warm, so I took her temperature. When it read 99.4 I stopped even looking and began packing up to take her to the E.R. Sounds silly, I'm sure, but when your child is still recovering from two open heart surgeries and the doctors tell you how dangerous it will be if she ever is to get infected, catch a cold or the flu you panic and you run to the E.R. at 10:30PM. I didn't get out until 3AM, but ended up visiting her as sleeping in a very tiny cubicle wasn't possible for me.
After a week in the hospital, she got out and once more six days later she was re-admitted.
Miles is selling his car ('99 V6 Camaro, anyone?) so he can buy a new one, which leaves Bella and I to gladly chauffeur daddy to work every morning. We had just plunked her into her car seat, hooked up her travel oxygen and looked up to see that she was blue. Literally blue. Our baby was comparable to a Smurf. Panic and blood rushed through my veins and I grabbed her out of the car seat, banged on her back like they showed me in Omaha, and began blowing on her face. Luckily only after a few hits on her back and breaths on her face, she came back. Our baby's heart stopped beating. She had momentarily died. In our house, under our care. You can never imagine the immense panic that went through me.
For that she was sent back to the hospital, this time admitted into the PICU. She'd had nothing wrong with her in regards to white blood cell count, RSV, infection.... It was a fluke and we've been further advised to just keep her home and if that happens again only call back if she does it consecutively. O_O
We've put in for a Compassionate move from the Air Force so that, God forbid, if something morbid happens that we're within at least 1-2 hours of a specialized children's hospital. Unfortunately we aren't able to state our preferences, so we have the possibility of moving to Omaha, NE (NO!!!); San Antonio, TX (pretty please?); Denver, CO (please!!); California; Minneapolis, MN (uuhh). Of all the places, I think I will be so mad if we're sent back to Omaha. I really, really, really did not like the place and as I got to know her ego-centric specialists, I lost faith in their abilities quickly. Omaha, in my opinion, is a small town that has expanded into a mediocre sized city way too fast. They seem to all be in over their heads.
Plus, I've never seen so many people run red lights in my life until I stayed in Omaha. NEVER. They drive like lunatics.
It's nearing opening time for the doctor's office and I get to call in to let them know she's been running a consistent fever of 99.5 - 103.0 for almost 12 hours. Even on antibiotics. I'm not sure if the fever is related to her g-tube being infected (I have NO idea how that has happened since I clean the darned thing twice a day) or if my baby has an infection that no one has, or will, figure out. I'm worried for her.
Wednesday, December 16, 2009
Successful Surgery #3
Bella's surgery went very well. You can read about it at her Caring Bridge website here.
I wish I had more in me, haha but I'm so spent that there isn't much to write about. For now, all we care about is Bella's progress in her health and getting our baby girl home.
I wish I had more in me, haha but I'm so spent that there isn't much to write about. For now, all we care about is Bella's progress in her health and getting our baby girl home.
Tuesday, December 15, 2009
There's No Place Like Home...
I think I can speak for both Miles and I when I say that we are so extremely tired of this. We're so thankful we knew before Bella was born of her Down syndrome diagnosis and to learn of her AV defect. We're thankful we were prepared and knew what was coming... but I have to admit, this possibility of another surgery is definitely a shocker to me. I suppose it was the last thing I thought I'd here, and most definitely the last thing I wanted to hear.
It's probably understandable, it's probably "normal" and I'm sure anyone could guess how I'm feeling... but I have to say it outloud. I want our baby girl and I want to take her home. She's three weeks old today and she's never seen her own nursery. I'm sick to my stomach that she might have to endure another surgery. I know that they wouldn't put her through it if it were unnecessary, but I can't help to think that she's only three-weeks-old! How much can such a little body take? I can't stand seeing her lying there so swollen she doesn't even look like our baby. Sitting in this hotel room is about all we can do, unless we want to go out and spend money (which we're trying SO hard not to do).
Yesterday Miles took us to the zoo. It was a lot of fun, I admit... but it was also so sweet. We were practically the only ones there. He hated that we just sat in the hotel when we couldn't be with Bella, and thought it was really unhealthy for us to just sit and stew. After Googling some things to do in Omaha, he found the zoo and thought, "Why not?" Thankfully all of the animals were indoors so we weren't subjected to the horrendous weather. I'm so grateful that even though my husband is undoubtedly stressed as well, he's looking out for my sanity and mental well-being on top of it all.
I understand it is all happening for a reason but to be honest, at this point, I'm exhausted in every way imaginable. I just want to be home. We feel like aliens in this city, and we can't even come "home" at night. (Although we've dutily filled the fridge with food and have practically made this our home by now).
Last night I wrote on Facebook that I'm very angry. Not at anyone or anything in particular, and by all means I do NOT resent Bella for any of this -- but I'm so angry she may have to have another surgery; that we may have to be here even longer than ever anticipated. I'm angry because it was such a surprise, and most of all, how it was delivered to us.
The lady was a "Home Officer", whatever that is, and I don't think it's appropriate that someone with the thickest Middle Eastern accent I've ever heard is sent in to tell us of "the surgery". Let alone she looked at us like we were crazy because we didn't know there'd be another surgery! At first I honestly thought she misread the echo and she was talking about a different child. I really did. Miles was able to understand her and knew she was talking about Bella, but I sat there with my mouth agape and freaking out inside. Once she left the nurse Errin clarified for me. Yet I couldn't believe some woman came in there and just talked to us like we knew... and once we began questioning her, acted like we were idiots because we didn't know what she was talking about. Something was miscommunicated, I'm aware, but I wish the hospital would have had more tact than to send someone who doesn't even have proper medical credentials.
Well, Miles is about to jump out of the shower and I have yet to dry my hair and look normal so I don't scare the world. Hopefully the surgeon will come talk to us as soon as we arrive. I think we deserve that much.
It's probably understandable, it's probably "normal" and I'm sure anyone could guess how I'm feeling... but I have to say it outloud. I want our baby girl and I want to take her home. She's three weeks old today and she's never seen her own nursery. I'm sick to my stomach that she might have to endure another surgery. I know that they wouldn't put her through it if it were unnecessary, but I can't help to think that she's only three-weeks-old! How much can such a little body take? I can't stand seeing her lying there so swollen she doesn't even look like our baby. Sitting in this hotel room is about all we can do, unless we want to go out and spend money (which we're trying SO hard not to do).
Yesterday Miles took us to the zoo. It was a lot of fun, I admit... but it was also so sweet. We were practically the only ones there. He hated that we just sat in the hotel when we couldn't be with Bella, and thought it was really unhealthy for us to just sit and stew. After Googling some things to do in Omaha, he found the zoo and thought, "Why not?" Thankfully all of the animals were indoors so we weren't subjected to the horrendous weather. I'm so grateful that even though my husband is undoubtedly stressed as well, he's looking out for my sanity and mental well-being on top of it all.
I understand it is all happening for a reason but to be honest, at this point, I'm exhausted in every way imaginable. I just want to be home. We feel like aliens in this city, and we can't even come "home" at night. (Although we've dutily filled the fridge with food and have practically made this our home by now).
Last night I wrote on Facebook that I'm very angry. Not at anyone or anything in particular, and by all means I do NOT resent Bella for any of this -- but I'm so angry she may have to have another surgery; that we may have to be here even longer than ever anticipated. I'm angry because it was such a surprise, and most of all, how it was delivered to us.
The lady was a "Home Officer", whatever that is, and I don't think it's appropriate that someone with the thickest Middle Eastern accent I've ever heard is sent in to tell us of "the surgery". Let alone she looked at us like we were crazy because we didn't know there'd be another surgery! At first I honestly thought she misread the echo and she was talking about a different child. I really did. Miles was able to understand her and knew she was talking about Bella, but I sat there with my mouth agape and freaking out inside. Once she left the nurse Errin clarified for me. Yet I couldn't believe some woman came in there and just talked to us like we knew... and once we began questioning her, acted like we were idiots because we didn't know what she was talking about. Something was miscommunicated, I'm aware, but I wish the hospital would have had more tact than to send someone who doesn't even have proper medical credentials.
Well, Miles is about to jump out of the shower and I have yet to dry my hair and look normal so I don't scare the world. Hopefully the surgeon will come talk to us as soon as we arrive. I think we deserve that much.
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