Friday, November 30, 2007
Yesterday I took Arianna to a follow up appointment with Dr. Donahue her eye doctor. We last saw him in May.
The appointment was for 3 PM and I had the nanny drop her off at my work for 2:15. I figured that would give me plenty of time to navigate the disaster that is I-195 and find my way through Wayland Square.
I got off the exit at 2:30, I was actually going to be early, for once! Not so... as I would spend the next 25 minutes navigating the streets around Brown University to TRY and find my way to the doctors office. I just can't break my 'late for my own party' streak...
I'll start out by saying my girl is such a tropper. She cried when the drops were put into her eyes (more so because we held her down) but was a perfect ANGEL from then on. She played nicely in the waiting room and sat quietly on my lap when Dr. Donahue met with us.
She's my hero. Especially considering there was a 7 year old girl in the waiting room who was in absolute TEARS for 15 minutes after they put the drops in her eyes - and wanted to be picked up by mommmy.
The best news? No signs of a turn in any way/shape/form and if its not evident in another 6 months, we're free and clear!!! He was very surprised her eyes were doing so well.
I couldn't be happier!
Thursday, November 29, 2007
My friend Megan's cutie pie Kaitlyn is having a birthday party earlier in the day but then I have to RUN home to set up for my candle party!
My friend Joanne had a PartyLite party a few weeks ago and I decided to have one too - if anything as a reason to get folks together. There actually isn't much in the catalog that I want but I do love to get people together and chit chat.
I invited a dozen or so people and only 5 will be coming, but thats ok. I'll have my tree and other christmas decorations up so the house will look nice (or as nice as it can with an unfinished kitchen).
I hope to get this if I have enough sales!
Picture quality stinks but its a snowglobe 'city' and you put a tealight candle in the globe...
Keeping Arianna out of everyone's hair during the party should be interesting... her new favorite word is 'dow' (for 'down') which can mean pick me up or put me down - which she does constantly and will scream quickly if you don't obey ;-)
Wednesday, November 28, 2007
Fall/winter I eat soup where in the summer I hardly eat soup. Same goes for tea (and I'm a tea nazi!). In the summer I eat lots of salads, where I don't in the winter.
I'm sitting here at work enjoying a FABULOUS breakfast:
- Cranberry Thomas English Muffin
- Whipped honey butter
- 1/2 c. fat free cottage cheese with pineapple
- Celestial Seasonings Gingerbread Spice Herbal Tea with fresh honey (from my friend Brenda's apiary!)
Hopefully I can introduce Arianna to some of my favorite foods too - then we can share in the joy together! Of course, just getting her to sit still and eat would be a miracle...
Can't wait for christmas - egg nog, mince meat pie and fruit cake! ya!!!
(Yes, I think I'm the only person IN THE WORLD that actually really loves fruit cake...)
Tuesday, November 27, 2007
I'm going to save my pennies for a set of alien bees lights and set up a studio in my basement - then I take all the pictures I want!
So anyway, I've set up a poll on the right to vote for which pictures I should use in our annual christmas card/newsletter. I usually use a picture of the three of us and then one of Arianna alone.
I'm averaging 150+ people looking at my blog daily - so please take a moment to vote for the two we should include, its super important to us!
Monday, November 26, 2007
I was home by 3:30 PM and had to get ready. I felt like I was going to a wedding - I never ever wear makeup and had to hunt for my 'bag of war paint' and find a suitable outfit to wear. Then into the shower to clean up and shave EVERY single hair off my body (why was that? Are people going to see me naked?). By 6:45 I was ready. I sat down and had dinner (big piece of blueberry pie w/ ice cream - real diet conscience huh?). Then we put Arianna to bed and I drove to the ATM and to my friend Megan's house.
6 years ago we lived with Megan and her now husband in their house, which at the time was 5 different apartments. We stayed there for 2 years before we moved to Providence and got our HUGE (in comparison) apartment. I arrived to find they had just finished what would be their dining room and Paul had just put in a really nice inlaid wood floor - it was nice. Then they told me they may be selling their house! I was surprised because I know how much work they've put into it but a developer may be buying up a bunch of the homes in her immediate area and putting in a strip mall or the like. I hope they get lots of money because their lot is really nice and they have a small garden area and HUGE in-ground pool.
Our friend Erika joined us and we drove to the restaurant. Our friend Karen met us in the parking lot and we bravely went inside. We were, surprisingly, one of the first people there - we checked in, said hello to some folks that had the nerve to look at us and went to put down our coats. This was going to be a multi-drink night.
It seriously took 2 drinks before I could talk to people. After the first one someone came up to me and said hello. I had no clue who she was. Turns out she'd had two kids and lost about 100 lbs. I really didn't recognize her. I wasn't friends with her in high school. It didn't take long before we were chatting up our kids and somehow the conversation twisted into her telling me about her really bad choice in guys and how she lived in a shelter and how she got beat up by her ex-boyfriend... way too much information, I barely knew her. I felt bad but it was obvious she wanted someone to talk to about it - it just wasn't going to be me.
After 4 drinks I ventured out of my 'comfort zone' and said hello to more people. After 5 drinks someone spilled my wine all over me (and my friend Karen). After 6 drinks the night was nearly over, we were starving and it was time to say goodbye. 5 hours, 6 drinks. Not too bad actually and none of us were unable to drive. We drove to dunkin donuts, at 1:30 AM and had flat bread sandwiches. I got home at 2:30 AM, dove into bed (make up, wine stained clothes and all) and got up at 8:30 AM. I don't think I got out of my PJs on Sunday... completely shocked at the lack of a hangover.
It amazes me that all the cliques were still there. I think I was only asked by 2 people what I was doing for work or where I was living - no one really asked those questions. As it turns out most of my classmates are single or still in grad-school. I think it was somewhere around drink 6 that I got to talk to one of my classmates who is doing post grad work in clinical psychology and works at a psychiatric hospital my mother frequents - for some reason I felt the need to give her a big hug and say thank you for all she does. My mom spends a lot of time in those types of hospitals and I doubt she's ever met my friend, but... I think the wine made me do it. I'm slightly ashamed of it now.
The music was way too loud. One of my classmates works as a DJ and he played everything super loud - so much so that I felt we had to scream to talk to people. The food stunk - there was almost NOTHING to eat. Everyone congregated around the bar - must be a sign huh?
Although I'm glad I went I didn't meet anyone I would like to keep in touch with. It was something to do but I doubt I would do it again any time soon - another 10 years sounds about right.
Thursday, November 22, 2007
Our more relaxing day started with a sad phone call from my mother. My cousin who was 16 weeks pregnant lost her baby yesterday. She works as an ultrasound technician (actually both of her parents and one of her sisters are also US technicians) and has been giving herself regular ultrasounds and noticed something odd on Monday. She had her sister give her another US and they noticed something was definitely not right (I think my mom said my other cousin cried the whole day).
Turns out, according to my cousins OB, that her baby had the worst case of spina bifida he had ever seen. She gave birth, yesterday, at 16 weeks, 4 days.
My cousin was pregnant with her first at the same time I was, actually a few weeks ahead. She was going to have the first child from our generation. Then I went early and had Arianna first, her little girl Samantha was born just 3 weeks later (and a week over due). We have lots of pictures of Samantha and Ari together, which are priceless. They're very spoiled great/grand kids! (of course, Samantha was walking at 9 months, talking in full sentences at 18 months and always near the top in terms of weight/height and my Nana always has to point out how Ari just doesn't match up to her).
I found out she was pregnant again a few months ago and was really jealous as I had baby-itis so bad (and still do). I make greeting cards (even sell them at a local store) and sent one to her as soon as I heard the news - I was happy for her even though I was sad for myself.
I'm not jealous now. I'd hate being in their position, grieving for their child.
What I find interesting is that SB can be genetic, and I never knew. I thought you just had to take folic acid and everything would be ok and that SB happened to people who didn't take folic acid. When I was first diagnosed with Long QT Syndrome I was battling a misdiagnosis of epilepsy and saw a prominant female neurologist who dealt only with female epilepsy patients and as I was exclusively dating (my now husband) at the time she DEMANDED I take folic acid supplements even though I wasn't trying to get pregnant - so it was sort of drilled into me that folic acid is the end all/be all prevention to SB.
What I found to be even more interesting is that SB has an alarming high rate of incidence in the Irish population. Woah. I'm very Irish, my cousin is very irish and married a man who is equally very irish (We're from Boston, its hard to escape Irish here... the flack I got when I married an Italian? More intense than most...). My mother's grandparents came in off the boat. My father's grandparents came off the boat in Canada and migrated down here during his parents generation (and his parents are 3rd cousins!).
I never knew of this genetic link. My husband and I are trying to conceive and I'm taking a daily multivitamin that has 400 mcg of folic acid - which my OB said was fine. Do you think I should ask her if I should increase that now that I have a close family member who had a baby with a severe case of SB? The research I've been reading lists a bunch of risk factors that don't apply to me except that I now have a family member with a history.
What was also very interesting was the response from various family members. My family is very 'Boston Roman Catholic' (everyone, including myself, went to catholic school at one point) - which, I believe, is its own form of catholicism. Rules just seem to be bent, broken, construed here more so than other places in the US (which is why I have no ties to them anymore). My father and grandmother joked about it today actually: "When you ask someone if they're from Dorchester you don't say 'what street did you live on?', its 'what parish did you belong to - St. Mark's, St. Gregory's, St. Peter's?' ".
When my dad's sister called to tell him the news this morning she told him the baby had died in utero. My grandmother said she 'had the baby naturally' and the surprising 'it's a blessing in disguise'. My father said she had an abortion and expressed very strong views on the subject (which surprised me, actually).
Either way, its very sad for my cousin and her family.
After hearing family reaction I think I'll keep my resuscitation views to myself though.
More importantly - what do you say? I'm sitting her trying to come up with an idea for a card, but I haven't a clue what to put in it.
Wednesday, November 21, 2007
Tuesday, November 20, 2007
So my 10 year high school reunion is coming up on Saturday. I'm still debating if I'll go despite recruiting as many of my high school acquaintances, whom i still talk to, to go with me... all 3 of them.
At least its not at my hometown's VFW post any more... I mean how low brow can you go?
Do I really want to spend my Saturday night with a bunch of people I couldn't stand in high school? Anyone I wanted to talk to I kept in touch with and how much do people REALLY change in just 10 years? I went to my 5 year reunion and the little social groups were still there and still snobbish (is that a word?).
On the other hand I have NOTHING else planned...
Wish me luck...
Monday, November 19, 2007
Here's the meme:
- Share 7 random and/or weird facts about yourself.
- Tag 7 random people at the end of your post, and include links to their blogs.
- Let each person know that they’ve been tagged by leaving a comment on their blog.
7 random facts:
1. I chew my hair... constantly. It's really not pretty. I have to pull my hair into ponytails or clips to prevent me from chewing on it. I have one piece of my bangs that REFUSES to cooperate and never grows longer than 3" so not long enough to pull back, but just long enough to reach my mouth for me to chew on. I seem to have a oral fixation or something. I chew my fingernails too. I sucked my thumb until I was a teenager... how does one get over this fixation? No clue, but I really should stop, I'm killing my hair.
2. I'm not very pateint. I'm immpatient with almost anything. I like instant gratification. I don't do much cross stitch anymore because it just takes so long. I get bored 'playing' with Arianna fairly easily - which is a shame for her. I can only read so many books 12 times or say YELLOW each time she presses the yellow button so many times before I start to gaze out the window and zone out - its bad. At work if something doesn't work after the first couple of tries I take a break and do something else because I'm frustrated (far too easily). But I'm learning - I'm much more patient than I used to be!
3. I drive stick shift - and LOVE IT! When we bought my corolla in '05 I special ordered it because I wanted the LE version with stick shift - which is hard to find. I just enjoy driving that more than automatic transmissions.
4. I love typing. I learned to type in 6th grade, taught myself. I can type over 80 words per minute and when I'm bored I find myself doing imaginary typing to random words.
5. I'm math deficient but enjoy abstract math - I find geometry and math patterns everywhere. My favorite is ceiling tiles and bricks - I can make all sorts of shapes out of them, calculate angles and find myself taking the time to count all the panels/bricks in a certain area. Ask me to do geometry and I'll laugh at you. I took algebra 8 times in college (due to transferring many times) as I was THAT bad at it, every time I transferred I had to start at the bottom level algebra class again. I finished with calculus and my degree in comp sci. How strange for my non-math self.
6. I'm not a good dieter. My size 8 jeans don't fit anymore and I'm kicking myself. I think I've put on a good 7 lbs. and I can't get motivated to get outside and go for walks (me and cold don't mix). We're getting a new DVD player for Christmas and then I can have one in the basement to do my exercise DVDs by... but what will I do until then? Get fat, obviously... grrrr...
7. I miss my baby terribly when she's away. I find myself falling more in love with her lately. I find myself having to scoop her up to hug her more NOW than when she was a baby. Of course now I can't get those hugs or cuddle time cause she's just too busy being a toddler... this makes our decision to try for another easy but I feel like I missed out on Arianna's baby time cause she was so sick and I didn't really feel like she was mine - like I was just babysitting her for the time being, ya know? It's weird when your life starts with 3 months in the hospital... weird when motherhood starts that way too.
Now for people to tag...
- Jess - who is way to busy with twins to do this, but I'll try.
- Emily - who is way too busy potty training to do this, but I'll try.
- Jessica - who is way too busy with sick kids and school to do this, but I'll try.
- Lisa - who is way too busy with her two kids, but I'll try.
And that's all I got - anybody else, chime in!
Shawn and Arianna arrived home yesterday at 1 PM and I spent the morning doing a mad dash through the house trying to clean.
I was at The Christmas Tree Shops first thing Saturday, just as they opened. I bought new curtains and lamp shades for the bedroom - the finishing touches on the 'new' room. Then over to BJs to buy water, cat litter, diapers and granola bars. Then to Dave's Market to buy food, then home to do a mad dash cleaning.
I concentrated on the bedroom first - moved everything back into the room, changed the outlet covers I had painted over, vacuumed the rug, dusted the furniture, changed the bed, put the mirror closet doors back on the track, put up the new tensions rods/tie up curtains, changed the lamp shades and closed the door. The room was 'complete'.
The to Arianna's room - quickly picked up toys, straightened up changing table/crib and put dirty laundry in hamper.
Then to kitchen - it was a disaster as the table/chairs was moved to accomodate the painting I was doing the night before. Pieces of the electrical work boxes were strewn everywhere from where my brother changed out my electrical boxes (we've put in child proof outlets so we don't have to mess with covers). My dad had a dozen different tools blocking the way of ANYONE walking (let alone a toddler) and I still had bags of groceries to put away - and the cat box smell was overpowering all of this. Did I paint a vivid enough picture for you?
So I started by taking all of my dads tools and putting them on the back porch - that was an instant face lift. Then I put away the groceries and then picked up the trash around the room. I moved all the painting equipment into the spare bedroom and closed the door - that room was a total mess, not to be seen! After that was done I changed out both cat boxes and straightened out the table as best I could - it was still piled up with pictures and cork boards I had taken off the walls to paint. I moved the table back against the wall and put the chairs in the living room. We haven't finished the cabinet that will hold the microwave so I have to shimmy (I love that word) the current cabinet back against the new pantry - it luckily fits. I grabbed the broom and swept the kitchen floor (took a good couple of passes as the sawdust was thicker than I thought), moved the catboxes, cat food, and trash can back to their respective spots and grabbed the vacuum (Dyson - best investment EVER) and did the rug in the dining room and living room.
Then I started Arianna's lunch and ran her bath - she had thrown up in the car on the way home.
Then picked up the living room, moved the dining room chairs back and took one final walk through the house - it sure didn't look like a house that had undergone such a MASSIVE transformation that week. I had to pat myself on the back as the house looked great for a mere 2 hours of work.
I finished making Arianna's macaroni and cheese just as they pulled in the driveway. I practically ran outside to get her and she had a huge smile on her face and was trying to unbuckle her carseat to get to me - I was excited to see that.
Into the bath she went as my parents arrived (with lunch! yum!). I sat her in the high chair for some mac n' cheese and she wouldn't eat. As a matter of fact by the time the day was over she would have thrown up twice and had only 4 oz. of yogurt and 2 pediasure bottles. That's it.
My parents stuck around long enough for my dad to finish putting the moulding around the pantry at the ceiling. The only thing we have left to do is baseboard around the pantry, the cabinet for the microwave and chair rails for the kitchen/dining room - and massive amounts of painting. I'll do the painting as I'm the new expert but my dad will have to do all the woodwork. Its amazing to me how much goes into a project like this. I'll have pictures for everyone tomorrow (hopefully).
My baby is sick... 'tis the season! I ended up pulling her out of bed about 8:45 PM because she kept making a gagging sound and I was afraid she'd throw up again...
She stayed up until about 10 PM and then went down for the whole night.
Shawn informs me one of her cousins came down with strep throat while they were visiting - I hope/pray Arianna doesn't get strep! She had a wicked cough this morning but otherwise she's as happy as can be - odd. When I'm sick I'm not chipper, thats for sure, but she's not acting sick at all - despite the 103° fever.
Unfortunately a family emergency is keeping our nanny in South Carolina this week so Arianna gets to spend Monday - Wednesday with grandma (who won't complain a bit!). I just hope she's just about over this cold. She's handling it alot better than she did when she was younger - not complaining/whining at all, which is refreshing.
Love this time of year! Don't you?
Friday, November 16, 2007
November 15, 2007 — A new imaging study shows that term infants with congenital heart disease (CHD) undergoing imaging studies prior to corrective surgery have widespread brain abnormalities similar to those seen in premature infants.
"The key finding is that brain development is delayed in these term babies with congenital heart disease; the babies looked on imaging like preterm infants," first author Steven P. Miller, MD, from BC Children's Hospital in Vancouver, British Columbia, told Medscape Neurology & Neurosurgery. The hypothesis then, is that the abnormality may start in utero, he said.
Their report appears in the November 8 issue of the New England Journal of Medicine.
Background Congenital heart disease in newborns is associated with global impairment in development. We characterized brain metabolism and microstructure, as measures of brain maturation, in newborns with congenital heart disease before they underwent heart surgery.
Methods We studied 41 term newborns with congenital heart disease — 29 who had transposition of the great arteries and 12 who had single-ventricle physiology — with the use of magnetic resonance imaging (MRI), magnetic resonance spectroscopy (MRS), and diffusion tensor imaging (DTI) before cardiac surgery. We calculated the ratio of N-acetylaspartate to choline (which increases with brain maturation), the ratio of lactate to choline (which decreases with maturation), average diffusivity (which decreases with maturation), and fractional anisotropy of white-matter tracts (which increases with maturation). We compared these findings with those in 16 control newborns of a similar gestational age.
Results As compared with control newborns, those with congenital heart disease had a decrease of 10% in the ratio of N-acetylaspartate to choline (P=0.003), an increase of 28% in the ratio of lactate to choline (P=0.08), an increase of 4% in average diffusivity (P<0.001),> anisotropy (P<0.001).> on MRI, was not significantly associated with findings on MRS or DTI. White-matter injury was observed in 13 newborns with congenital heart disease (32%) and in no control newborns.Conclusions Term newborns with congenital heart disease have widespread brain abnormalities before they undergo cardiac surgery. The imaging findings in such newborns are similar to those in premature newborns and may reflect abnormal brain development in utero.
I find this very interesting and important! With more information paid to brain development, more research can be done to prevent damage from happening!
Thursday, November 15, 2007
10.) The pay in IT is good compared to many other professions, but since they pay you well, they often think they own you
Although the pay for IT professionals is not as great as it was before the dot-com flameout and the IT backlash in 2001-2002, IT workers still make very good money compared to many other professions (at least the ones that require only an associate's or bachelor's degree). And there is every reason to believe that IT pros will continue to be in demand in the coming decades, as technology continues to play a growing role in business and society. However, because IT professionals can be so expensive, some companies treat IT pros like they own them. If you have to answer a tech call at 9:00 PM because someone is working late, you hear, "That's just part of the job." If you need to work six hours on a Saturday to deploy a software update to avoid downtime during business hours, you get, "There's no comp time for that since you're on salary. That's why we pay you the big bucks!"
9.) It will be your fault when users make silly errors
Some users will angrily snap at you when they are frustrated. They will yell, "What's wrong with this thing?" or "This computer is NOT working!" or (my personal favorite), "What did you do to the computers?" In fact, the problem is that they accidentally deleted the Internet Explorer icon from the desktop, or unplugged the mouse from the back of the computer with their foot, or spilled their coffee on the keyboard.
8.) You will go from goat to hero and back again multiple times within any given day
When you miraculously fix something that had been keeping multiple employees from being able to work for the past 10 minutes - and they don't realize how simple the fix really was - you will become the hero of the moment and everyone's favorite employee. But they will conveniently forget about your hero anointment a few hours later when they have trouble printing because of a network slowdown - you will be enemy No. 1 at that moment. But if you show users a handy little Microsoft Outlook trick before the end of the day, you'll soon return to hero status.
7.) Certifications won't always help you become a better technologist, but they can help you land a better job or a pay raise
Headhunters and human resources departments love IT certifications. They make it easy to match up job candidates with job openings. They also make it easy for HR to screen candidates. You'll hear a lot of veteran IT pros whine about techies who were hired based on certifications but who don't have the experience to effectively do the job. They are often right. That has happened in plenty of places. But the fact is that certifications open up your career options. They show that you are organized and ambitious and have a desire to educate yourself and expand your skills. If you are an experienced IT pro and have certifications to match your experience, you will find yourself to be extremely marketable. Tech certifications are simply a way to prove your baseline knowledge and to market yourself as a professional. However, most of them are not a good indicator of how good you will be at the job.
6.) Your nontechnical co-workers will use you as personal tech support for their home PCs
Your co-workers (in addition to your friends, family, and neighbors) will view you as their personal tech support department for their home PCs and home networks. They will e-mail you, call you, and/or stop by your office to talk about how to deal with the virus that took over their home PC or the wireless router that stopped working after the last power outage and to ask you how to put their photos and videos on the Web so their grandparents in Iowa can view them. Some of them might even ask you if they can bring their home PC to the office for you to fix it. The polite ones will offer to pay you, but some of them will just hope or expect you can help them for free. Helping these folks can be very rewarding, but you have to be careful about where to draw the line and know when to decline. For help, take a look at TechRepublic's free download "Ten ways to decline a request for free tech support."
5.) Vendors and consultants will take all the credit when things work well and will blame you when things go wrong
Working with IT consultants is an important part of the job and can be one of the more challenging things to manage. Consultants bring niche expertise to help you deploy specialized systems, and when everything works right, it's a great partnership. But you have to be careful. When things go wrong, some consultants will try to push the blame off on you by arguing that their solution works great everywhere else so it must be a problem with the local IT infrastructure. Conversely, when a project is wildly successful, there are consultants who will try to take all of the credit and ignore the substantial work you did to customize and implement the solution for your company.
4.) You'll spend far more time babysitting old technologies than implementing new ones
One of the most attractive things about working in IT is the idea that we'll get to play with the latest cutting edge technologies. However, that's not usually the case in most IT jobs. The truth is that IT professionals typically spend far more time maintaining, babysitting, and nursing established technologies than implementing new ones. Even IT consultants, who work with more of the latest and greatest technologies, still tend to work primarily with established, proven solutions rather than the real cutting edge stuff.
3.) Veteran IT professionals are often the biggest roadblock to implementing new technologies
A lot of companies could implement more cutting edge stuff than they do. There are plenty of times when upgrading or replacing software or infrastructure can potentially save money and/or increase productivity and profitability. However, it's often the case that one of the largest roadblocks to migrating to new technologies is not budget constraints or management objections; it's the veteran techies in the IT department. Once they have something up and running, they are reluctant to change it. This can be a good thing because their jobs depend on keeping the infrastructure stable, but they also use that as an excuse to not spend the time to learn new things or stretch themselves in new directions. They get lazy, complacent, and self-satisfied.
2.) Some IT professionals deploy technologies that do more to consolidate their own power than to help the business
Another subtle but blameworthy thing that some IT professionals do is select and implement technologies based on how well those technologies make the business dependent on the IT pros to run them, rather than which ones are truly best for the business itself. For example, IT pros might select a solution that requires specialized skills to maintain instead of a more turnkey solution. Or an IT manager might have more of a Linux/UNIX background and so chooses a Linux-based solution over a Windows solution, even though the Windows solution is a better business decision (or, vice versa, a Windows admin might bypass a Linux-based appliance, for example). There are often excuses and justifications given for this type of behavior, but most of them are disingenuous.
1.) IT pros frequently use jargon to confuse nontechnical business managers and hide the fact that they screwed up
All IT pros - even the very best - screw things up once in a while. This is a profession where a lot is at stake and the systems that are being managed are complex and often difficult to integrate. However, not all IT pros are good at admitting when they make a mistake. Many of them take advantage of the fact that business managers (and even some high-level technical managers) don't have a good understanding of technology, and so the techies will use jargon to confuse them (and cover up the truth) when explaining why a problem or an outage occurred. For example, to tell a business manager why a financial application went down for three hours, the techie might say, "We had a blue screen of death on the SQL Server that runs that app. Damn Microsoft!" What the techie would fail to mention was that the BSOD was caused by a driver update he applied to the server without first testing it on a staging machine.
I got a call this morning from my husband to say good morning. I immediately asked how Arianna was doing on their trip and he said she just had breakfast. He gave her the phone and she's actually 'talking' to me now. She's got some pretty sophisticated baby babble going on and in the midst of that I hear "hello mama... glroo ba ba gloo ba". Melted my heart I tell ya.
At any rate I asked Shawn what she had for breakfast and she had yogurt and a piece of toast with cream cheese.
Every day this week she's had huge helpings of macaroni and cheese and ice cream (the only things she'll eat unlimited amounts of). Snacks have consisted of string cheese. Lunch is usually mac n cheese or a grilled cheese sandwhich. She'll eat raisins and I top her ice cream with some kind of fruit baby food. I try to hide some vegetables in her macaroni but she never seems to get enough. She used to eat hot dogs with her mac n cheese but now spits them out.
She has 3 bottles of pediasure a day and at least 3 bottles of whole milk.
Boy, are we lucky she's not lactose intolerant... seriously. I feel for any preemie parent that has to deal with feeding issues and lactose allergies!
Tuesday, November 13, 2007
- my child walked before yours
- our lives suck more than yours/are better than yours
- my child does this and yours doesn't
- I don't/do post about this so I'm better than you
I've talked to a few parents lately that leave me with a feeling that they are competing with other moms for the title of 'best mom' or something else completely irrelevant.
I don't understand this. I hate feeling like I have to compare my parenting to someone else's or my child to another - doing so creates stress and I hate that. Why do people do that? Do they like conflict or the stress it creates? Does it make you feel better to try to tear others down? I'm sure I've been guilty of this before but I can tell you that I'm working on it - I don't want others to feel they have to compare themselves to me or to decisions I have made. I don't want to seem like I'm better than anyone else - if anything I want people to feel like I am just like them. I want people to feel I'm approachable and can empathize on their level.
I'm trying to understand the thought process that goes along with competing - is it a form of 'survival of the fittest'?
Although its cliche "can't we all just get along?". Or as my grandmother used to say "you catch more flies with honey"... Just saying 'Yes, I understand what you mean/where you are coming from' can go so much farther than 'I'm better than you cause you don't do 'X''.
It's sad. I bet we could all do so much better, on a whole, with more support toward each other.
Sunday, November 11, 2007
"Anything written here is from my sole point of view and is speaking for me/my family alone. Anything here that you may find offensive, please know that my intent with this blog is to share my thought process/life and is in no way/shape/form a reflection on my thoughts of people who would do something differently than me"
I've been very busy adding a new pantry to my kitchen and painting my bedroom but this has not been far from my mind.
A recent discussion was started at The Preemie Experiment that has me, and other preemie blog moms, outraged.
No, the discussion is not about resuscitation of extremely preterm infants. No, the discussion is not about comfort care for said infants.
The discussion was about the value of a preemie.
The conversation started like this:
"And those of us who are thankful for our children and blog about them don't pretend everything is fine. Some people, including me, believe the fact that our children are alive is a miracle. I personally think all children are miracles but that's another story. We don't sugar coat our lives Terri. We blog about our every day struggles, joys, and affects that these children have on our lives. Just because we're not unhappy they are alive does not mean that our blogs claim all in the prematurity world is miraculous. Why do you see everything as black or white? We write about projectile vomit (some even post pictures), we write about numerous doctors appointments, physical therapy, CP diagnosis, PVL, oxygen needs, g-tubes, oral aversion, SPD dx, the list goes on and on. Sometimes we are frustrated, depressed, and extremely sleep deprived, and we need to vent and get support from those who know what we're going through. Sometimes we are posts are filled with joy when our children reach another milestone. We bounce ideas off one another so that we can have more information when books and outsider's advice don't pertain to our kids. I don't what blogs you've been reading but the ones linked to this blog do not hide the realities of our lives. Some kids are in wheelchairs, pony walkers, and leg braces. Some kids have shunts and are currently in the hospital.
The difference is we celebrate their lives and for some reason that is insulting to some here."
"The preemie path isn't all doom and gloom. Its not as 'easy' as most full term paths (if any of it is really easy) but its not horrible either.
We preemie parents rejoice at sitting up more than full term moms. We rejoice at coming off the vent where full term moms don't even know what that is. We rejoice (as TPE has) when our child rides a bike, probably more than most full term ones. We rejoice when our child does good in school, probably even more so than most unaffected full term ones.
If anything I see the preemie path being MORE rejoiceful (dare I say, miraculous) than most paths of full term children.
Are we mad that they came early? eys! Are we mad that they suffer from being a preemie? yes! But that doesn't mean we can't rejoice in what they do manage to do and find joy in the little things - things full term parents can't understand.
Having that outlook is good - much better for our children too.
It's not all doom and gloom! Its only that way if you make it."
"Your comments are YOUR response NOT we preemie parents. I am a mom to a moderately impacted 25 weeker and I communicate daily withother moms of micros born in the same 2-3 span as my son. I can tell you that you DONT speak for any of them. Please refrain from acting as though your superior "mothering" of a preemie speaks for all as it really doesnt and just perpetuates the martyr image which makes me ill.
Rejoice my ass. My son didnt deserve to be born early and there was/is nothing miraculous about his birth. Pain, suffering yes but miraculous? No."
"Yes, the fact that our children are alive is a miracle. Rejoicing in what they can accomplish is so much better for your children. Yes, its tragic that they came early and suffer life long for it (my son (a 26 weeker surviving twin) will never be like his friends - he's deaf and has SPD), but we celebrate the things he accomplishes because they really are so big for him!
Do we use such phrases as:"Rejoice my ass. My son didnt deserve to be born early and there was/is nothing miraculous about his birth." around him or to describe any aspect of him? Heck no!
His birth was tragic and there is no rejoicing in that, but his life is miraculous - everything he does is a miracle, moreso because of his tragic birth! Being a preemie doesn't change the fact that, to us, he's a miracle. The day the tube comes out and he eats on his own will be a miracle we will definitely rejoice in, just like so much he does.
That's the difference myself and 23wktwins'mommy are talking about - while there birth is horrible and not something to be really celebrated, their life is - no matter how affected.
Harboring such negativity about situations one can't control is not good for anyone or the child.
Am I saying be unrealistically happy and forget about all the research and statistics and all that? No! But at the same time it shouldn't cloud your overall view... I get the feeling, especially from 'terri w/2' that that is the case.
Prematurity is a tragedy but it doesn't have to the negative focus many here make it. There are many who agree with 23wk and me - but they don't post here anymore because of the negativity. You don't see too many of the active preemie mom bloggers posting here anymore do you? No, because they are trying to be as optimistic about their children as they can while keeping the 'research' in the back of their head. As a matter of fact I almost learn more about prematurity from reading Holland and Eden's blog than this one...
Someone has cancer and will die - does living out their last days in anger make it any better? My aunt died of stomach cancer 2 years ago (which for anyone knowing about it, once its found you usually have a few weeks)but spent her remaining months very optimistic and as happy as she could muster - her doctors believed it helped her live much longer... and I believe there is research to back that up.
I truly believe that doing this rejoicing is better for our son. My son will never be like his peers and may never live on his own but I accept that and find joy where I can.
We are pregnant and already have a DNR for prior to 26 weeks (if the hospital acknowledges it is another issue), yet our son was born at 26 weeks - this doesn't mean we love our son less because of his gestation but we are aware of the risks and accept them now."
"Your reality is not everyones. What I mean is how you feel/cope etc works for YOU. To imply that others should do what you do is what bothers me. I dont love my son any less than you love yours. The difference is that I have a different belief than you. This doesnt make you right and me wrong, nor vice versa. Im glad you have found what works for YOU.
I find it VERY insulting that those that disagree with you are some how wrong.
To you it is a miracle your son is alive. To me it is modern medicine which is NOT miraculous. I can agree to disagree without insulting you. Can you do the same?
On the note of many bloggers not posting here any longer I have a different take. Most of the crop of bloggers kids are <3>
Most of the preemie blogs I read, the parents all think "they" are the exception. One day this will all be a memory and their kids wont be impacted. Hard to keep thinking that when helen and others show you those darn bothersome statistics.
I also agree with C&V when she said that alot of times we as parents, caregivers etc assign value, etc to our kids lives because it makes US feel better. (This was not her exact phrase but what i got from it. If I misinterpreted I am sorry Chris)"
"Are you for real? Do you really think that a preemie mom who blogs about how much they love their child or how fantastic they are are living in some dream world?
So a preemie mom writing about how much she loves her child with CP, deaf, feeding disorder, and enjoys every moment she has with her child is doing so out of denial?
So I guess a life of disability is not worth living?
Wow... it's not possible to find joy in a disabled child huh?
If I were you I'd think before you post and insult so many of the preemie moms here."
Anyone who has spent any amount of time reading some of my preemie related posts here knows that I can not judge a parent who has chosen to resuscitate their child (I did), and can not judge a parent who has chosen comfort care (I will if a child we have is born prior to 26 weeks) - I wouldn't even know where to try as its such a unique/personal decision.
My daughter was born at 28 weeks - she was intubated for 18 hours. If she had not been she may have died. I did not have a choice in the matter and that was fine by me as I was convinced,and still am, that everything would be fine and it was the correct decision.
I love my daughter, more than ANYTHING in this world - she is my world. I do not regret, for a moment any of the decisions made in the NICU during her 6 week stay there (despite the lack of privacy and breastfeeding support). The hospital she was at was fantastic and they did right by my family.
My decision to resuscitate a micro preemie has not changed either. I never had an opinion on it because I never imagined it would be a decision I would have to make but I am sure that prior to 26 weeks I will need very convincing evidence that my child is behaving as a more mature premature infant (oxymoron huh?) to agree to artificial prolongation of its life. This is mainly due to neurological issues that can arise. Can those arise at any gestation? Yes... but the probability of those issue occurring increase at lesser gestation and its not something we are comfortable with.
This does not mean that I think that families who chose a route we would not are wrong! Let me repeat that. This does not mean that I think that families who chose a route we would not are wrong!
The comments I am posting about above are slightly different, even though they originated from the discussion about resuscitation. What infuriates me is this comment in particular:
"I also agree with C&V when she said that alot of times we as parents, caregivers etc assign value, etc to our kids lives because it makes US feel better."
I feel horrible that I was not able to carry my daughter to term - this is a guilt that is very hard to get rid of. What if I had gone to the hospital sooner? What if I had done this? What if I had insisted on that? A million different scenario's run through your head but in the end it doesn't change anything - it is what it is and you have to move on.
The process of moving on, for many preemie moms, is starting a blog, like I have and talking about our children and sharing all the joy and sorrow that goes with it. I don't lie - life with Arianna has been hard. She's failure to thrive and has gross motor delay and her premature birth has had very real emotional/financial impact. I read alot of other preemie mom blogs whose children have a variety of issues and NEVER once did I read a blog and think - this mom is in denial that her child has some serious issues. Never once.
There is no lack of evidence/studies/statistics out there to tell preemie parents that their child will not be 'normal'. They didn't have these studies when I was an infant - my parents did have a clue what they were up against when I was born at barely 30 weeks (I was only 1 oz. larger than my daughter at birth). Retinopathy of Prematurity? What's that? My husband has a friend who is exactly one year older than me (we share a birthday) who is blind from ROP/extended vent time. My parents didn't have a clue what that even was when I talked to them about it today (as we were painting my bedroom, none the less) - my mom didn't even hold me until I was a month old and I spent 8 weeks on a ventilator. I was 13 lbs. at a year old and didn't walk until I was 19 months.
I'm not blind and although I was cross eyed as a child (which my friend Kate's full term daughter is having surgery on next week) I wore glasses. I graduated in the top half of my high school class and have a math centered degree in computer programming. I'm articulate and pretty darn bright. I'm married to a great man, we own our home and have a beautiful daughter.
Many of the troubles I had growing up were equally shared by my full term peers.
I'm a preemie statisticians worst nightmare. I'm Helen Harrison's worst nightmare - I'm a preemie that turned out great! Look at me everyone!! I'm a functioning, excelling member of society!
“A child’s outcome is directly linked to their parents and their environment.”
But I'm also not ignorant to the fact that many premature infants don't share my fate - many are suffering and many families are torn. Some of those families even tried to stop the suffering but ran into road blocks or didn't fully know the extent of the problems until they didn't have a chance to put an end to it.
My daughter is only 19 months old - do I know what the future holds for her? No. But I do know she's doing better than me! She has no eye turn yet (I had a severe one at a year old), she was 17 lbs. at a year old and walked at 17 months. Thats pretty darn good. I can only hope that she does as well as I did growing up - and that we do as good, if not better, a job than my parents do (which on many days is very questionable). If at some point she becomes disabled or afflicted in some way will my love for her change? Will her VALUE to me change? No - and to the commenter's on Stacy's blog who insinuated that was the case for them, I'm so very sorry for your children because they deserve someone who values them despite their disabilities.
So when I blog about how great my daughter is doing at any one given task or on any one given day, or when I talk about how much I love her I am not ignoring the fact that she may have many problems as she gets older. I'm not living in a dream world and fully understand the risks she faces.
I think this is an issue many parents of preemies from my generation have issue with because the medicines/practice used on their infant had very dire consequences that were unknown at the time - such is the game you play in medicine, with anything: cancer, prematurity, epilepsy - you name it! Does that make it right? No! But that is a risk you take as a HUMAN BEING. Just being a part of this world requires risk... medicine is one of them. Not comfortable with the risk? Don't partake. Not comfortable with the possibility of having a child with a disorder/disability? Don't have kids!
I feel sorry for the parents of older preemies who feel it is their duty to shove their outcome down the throat of a 'new' preemie parents - share, yes; shove, no!
I really enjoyed reading Stacy's blog but her "community of people dedicated to the open discussion of the long term effects of prematurity" is toxic (to borrow 23wktwinsmommy's analogy - great one by the way!). There are no advantages to being born prematurely but there are many outcomes, equally ignored, that are good. I never even hear about them in the media - you only hear about them in the hospital. How about a follow up? So if there isn't a follow up it has to be ignored?
Being born at 26 weeks is not a horrible existance as several of the commenters on Stacy's blog say it is. The inscidence of prematurity related disabilities are still dwarfed by genetic disabilities that can also affect children. Do you ever hear about spina bifida parents screaming at you to NOT save a SB child? How about Down Syndrome? If anything I hear DS parents talk about how wonderful having a DS child can be - is it easy? NO! Is it heartbreaking? YES! Is it worth it? YES!
Now that I accept that Stacy's blog is nothing but a huge void of negatvity it holds no VALUE for me and I won't contribute to that type of community. Its a shame as I feel I was a good addition to her blog as an adult preemie and since so many had already abandoned it due to its 'tone'. If she was looking to build a community there she should make sure that people a) feel welcomed b) feel its balanced with more truth from a variety of sources (not just the 3 or 4 'dark clouds of doom'). More often than not I read Stacy's blog and get depressed for the commenters there because I have to read about the older preemie moms talking about how much they hate their lives. They say they love their children but talk about how much life with them sucks.
That's so sad for them. My parents loved parenting me and my brother, we have alot of fun together. My uncle in Texas loves parenting my 26 weeker triplet cousins (all of which he just sent off to college) and there are many preemie parents who would say the same - I just wish more was done on her blog to seek out what they have to say. Their long term affects of prematurity are just as valued and a voice needs to be given to them too.
I'm sure parents of children with specific genetic disabilities talk about how hard their lives are, but I'm quite sure they don't breed a 'community' that makes newcomers feel like their decision to give birth to a child with a disability was the wrong one.
I realize thats not the intent of Stacy's blog and I hope that people who realize this know what they are getting into if they get involved in that 'community'.
And no, I don't feel guilty for bringing that blog post to the attention of the preemie blog community - more of them need to be aware of the intolerance being spread, and especially the lack of trying to stop it.
There will be no comments allowed on this post. If you would like to talk to me about it please email me: email@example.com
Friday, November 09, 2007
Shawn and Arianna are off to see his family for our annual 'Thanksgiving week in Kentucky' tonight. They'll drive 16 hours while I stay home... again. There is a discrepency in my vacation time at work and I don't have enough time for this trip, I guess. I wouldn't have enough time accrued by the time our cruise comes around if I took this week anyway...
I'm disappointed. I really enjoy staying with his family (the food, outstanding!) and especially seeing his mother, whom I adore. It would normally be the week of Thanksgiving but his mothers new job couldn't grant her that week, so she took the week before instead.
Shawn is surprising her - she still thinks he'll arrive the day she leaves to go back to CA. She'll be so thrilled to see Ari again and I know everyone will have a great time. Shawn's cousin David's wife Sheila just had a little girl this week (gosh, we better call and find out how she's doing!) and I've already packed the camera (no, not my new one! I'll be buried with it!) for him to take lots of pictures. Arianna will get to play with her cousins Abby(2), Brenden(3) and Alyssa(4.5) - which I'm sure she'll love. But most of all she'll be spoiled rotten by her grandma. I wish I could be there to see the expression on my mother in laws face when she sees Arianna :(.
So what will I be doing while they're gone this time? Not a scrapbooking marathon! I have a crop to go to tomorrow night but I have everything all set for that - an album on my great aunt and uncles 50th wedding anniversary.
I'm going to be tearing apart my bedroom and kitchen!
My father and brother arrive early tomorrow morning so we can tear down a wall in my kitchen to put in a pantry - we have NO space at all to store food, I've been hiding it in cabinets with the dishes and storing it in the extra bedroom we have. They anticipate it taking most of the day on Saturday (hopefully before my crop starts!) and I'll spend all day Sunday spackling to cover joists and screw holes... then the rest of the week will be spent painting. Our bedroom is purple... dark purple sponge paint and we didn't paint it that way. It's nasty. I'm going to paint it a sort of tropical yellow/orange to make it more inviting and brighter. The kitchen is going to be painted a muted yellow and I'm going to take down the hideous ivy wall paper running on one wall.
I'm ambitious - hope I can finish it before they get home next Sunday!
Tuesday, November 06, 2007
Pair that with photoshop and I'll never have to pay Sears for photos again!
I couldn't be more happy.
Isn't she just the cutest? I could just kiss her... oh wait, after this shot, I did! :)
Monday, November 05, 2007
This is 'my boy' - TiSan. He's a seal point snowshoe siamese we rescued from Maryland in 2001. Its hard to believe he's been with us for 6 years now. He's going on 12 years old but you wouldn't know it - he's still our pretty boy :)
Sunday, November 04, 2007
Recently there have been comments at The Preemie Experiment that hint at resuscitation limits on micro-preemies. The comments don't come right out and say it, but its implied and the subject is danced around... a lot.
This is a hard subject, as a parent, to even think about, but parents of preemies or those affected by prematurity understand it well.
Do you set a limit on when you would allow your child to be 'saved' by the medical establishment?
I do. My husband and I have spent many nights talking about this.
I first brought it up a year ago when I came across the story of a 30-weeker who was suffering greatly from an IVH resulting from his premature birth. An MRI at age 3 was so bad the doctors said they were shocked he was alive. At 5 years old he was in a vegetative state and did not know anyone, suffered daily seizures that were getting worse and was breathing and eating artificially. His parents made the decision (with doctor support) to withhold his food in an effort to end his suffering - a la Terry Schiavo. It took him 4 weeks to pass away.
His parents divorced a year after his birth when he was first transferred to a rehabilitation nursery/hospital. His mother couldn't work as taking care of him required all her time/effort so they lived in subsidized housing. She got all her clothes from Goodwill and relied on her church for handouts. She had no real friends because her time was so focused on her son (despite 24/7 nursing care). She was attempting to go back to school but the night classes were taking a long time. She had essentially lost her identity.
The story I read about this family was heart breaking. His parents attempted to withdraw life support systems from their boy when he was 2 weeks old but due to his gestational age the hospital took temporary custody of him and barred the family from making any decisions about his care. The courts stepped in and 'saved' the boy. The doctors stepped in and 'saved' him to live a life dependent on machines with no brain left to use.
His parents regained control when he was 10 months old but by that time he was stable enough to be transferred to another hospital and life as they knew it would be turned upside down, again.
His mother said, time and time again that the aggravation they felt for themselves was nothing compared to the aggravation they felt for their son. By the time he was 2 he had undergone 17 surgeries, by the time his death came about he had undergone more than 30. His mother said she hated holding her son while watching him go through a 30 minute seizure or filling his feeding pump only for him to rip out the tubing and have it go EVERYWHERE but into him, where it belonged.
Where is the fairness in condemning a boy and family to a life consisting of this? At what point does someone get to say 'Enough!'?
In 1950 my grandmother gave birth to her first child, a boy, prematurely. I'm not sure how much because she never talked about it and no one asked. His name was Richard but he was called Dicky. Dicky was 4 years old when my mother was born, followed 2 years later by my twin uncles. When Dicky was 6 he was institutionalized.
Dicky was a 60 lb newborn at that point. He couldn't walk or talk and had, what my grandmother called, 'fits' on a daily basis. My grandfather suffered from mental illness and spent the majority of my mothers childhood as a guinea pig for many of the medications now in use (and not in use) to treat mental illness and as such was absent from their lives. Although they never divorced, my grandparents were never 'married' and my grandfathers death in 1988 was a relief to my grandmother. My grandmother had no help and had to institutionalize Dicky.
They visited him twice my mother said. At age 21 he choked on food (chicken bone?) and died. My grandmother, to the day she died, never talked about Dicky.
I saw pictures of him - he looked just like my brother when my brother was a baby, cute little brown curls and round cheeks.
A few years ago I went to my grandmother's family reunion. I knew nothing of these people - I had only met one of them once in my life. My mother had little to do with them also but my grandmother had recently gone into a nursing home and we wanted to get in touch with everyone.
I met a bunch of really nice people. My grandmother, as it turns out, was the oldest of 10 children. Her mother died of breast cancer when she was young and her father died at the kitchen table of a severe asthma attack when she was a teenager. The 'state' took the four youngest and a cousin moved in with my grandmother to help her raise the rest. She had, essentially, raised children since she was one herself.
At the cookout I heard her sisters/brothers talk about how rough my grandmother had it when trying to get help for Dicky when he was very young. I'm glad I'm born in the time I am now because there is much more help now for struggling mothers. It helped put her life/trials into perspective for me.
When Arianna was born, rather when I was in labor with her I remember a resident in the ER telling me, 'It'll be ok...' and I looked at her point blank and said 'Of course it will be ok, I'm a preemie myself - she'll be fine!'
I'm a preemie and dealt with delivering a preemie myself yet I was not aware, at the time, of all the dangers of being born prematurely. Just after she came home from the hospital (and then back to the PICU) I started doing some research and came across the 'prematurity secret' (at least thats what it seemed like to me) - its not all 'teeny tiny babies who grow up to be fine'. There are a lot of preemies severely affected by their births and with the prematurity rate rising as much as it is, yet the severity of its impact not declining, thats really scary!
Last fall we made a conscious decision. If we decide to have another child we do not want to use medical intervention to keep me pregnant if delivery is imminent prior to 26 weeks. How will we do this? I don't know how (or if!) just yet, but I'm terrified. I sat in my OBs office just a few weeks ago and cried so hard she couldn't understand me when I talked about trying again. The worst part was when she told me I may not have say in what happens in the delivery room.
Parents are not allowed that say:
The Baby Doe Law or Baby Doe Amendment is the name of an amendment to the Child Abuse Law passed in 1984 that sets forth specific criteria and guidelines for the treatment of seriously ill and/or disabled newborns.Is that right? I don't think so. Many parents want everything to be tried to save their children, whatever the outcome, and I wish I could share that. But knowing all that can happen and the suffering they could go through... I can't. Does this mean we should close up the baby shop? Yes, I think it does. No, I don't think so. It's like Russian Roulette. Who wants to play?
The Baby Doe Law mandates that states receiving federal money for child abuse programs develop procedures to report medical neglect, which the law defines as the withholding of treatment unless a baby is irreversibly comatose or the treatment is "virtually futile" in terms of the newborn's survival. Concerns about a child's quality of life, which are often the primary factors in deciding to withhold medical treatment from premature infants, are no longer seen as valid reasons for withholding medical care.
The law came about as a result of several widely publicized cases involving the deaths of handicapped newborns that resulted from withheld medical treatment. The primary case was a 1982 incident involving "Baby Doe" a Bloomington, Indiana baby with Down syndrome whose parents declined surgery to correct a blocked intestine, leading to the baby's death. The Surgeon General of the U.S. at the time of this incident, C.Everett Koop, argued the child was denied treatment not because the treatment was risky but rather because the child was mentally retarded. Koop commented publicly that he disagreed with such withholding of treatment.
Does this mean we are unfit parents? Does this mean we don't have unconditional love? What is unconditional love in regards to the parent of a preemie?
Knowing my support unit, the history of my family and stories of other preemies we don't feel we are able to survive as a family if we had a micro preemie with severe problems... It makes me so very sad to post this and I know even in the preemie community I have no support - after all many preemies 'turn out just fine', but many also do not. I think you hear more about those that 'made it' than those who don't and that's too bad.
Why do some parents test for birth defects when pregnant? How often are those families chastised when they make the decision to end the pregnancy as a result? More often than not, people 'understand', right?
Why does the decision to have a child have to include such decision as: "Shall we get divorced?", "Shall we lose half our income?", "Shall we lose all our friends?", "Shall we give up going out together on a date night or on a vacation?", "Shall we give up any thought of retirement?". These are all realities for a lot of families with severely affected preemies - and thats just the parents side.
How about "Shall we try surgery again?", "Shall we try to get the lift in the house for junior? He's too heavy for me to carry", "Shall we try putting him in a group home now?"... Why do ANY parents have to think of ANY of these things?!
There are far to many families who suffer life long from prematurity and we, as a married, devoted couple feel we can not... Knowing my reaction to stress, we know I can't.
Why not see how they do and then make the decision? Because many times that decision is taken away from parents! (I'll have to dig up the exact lawsuits in the literature so I don't have them to post here)
The decision to have a child should be a happy one and instead we are terrified and ashamed.
Edit: Had to add it in Sepia tone as I think it looks FAB in it :)
Went to the park today to get pictures in the fall foliage. I took over 200 photos and got 3, yes, just 3, in which she was looking at ME and smiling. I'm beginning to think she hates the camera as most of pictures were of her walking AWAY from me.
I love this picture for its composition but not so much for the exposure level, its kinda washed out - even after photoshop color pop actions... but its still shows my sweetie pie's beautiful smile and flirty personality :)