When Jennifer DeCesari learned that she was about to deliver her baby at 28 weeks, her first reaction was to say, “I’m a preemie, too. Everything will be OK.”
But now, DeCesari sees in her daughter’s struggles reminders of her own painful childhood. And she has found that everything is not OK.
DeCesari was born in Boston in 1978 at 30 weeks’ gestation, weighing just over 3 pounds. She was socially immature, physically weak and uncoordinated until high school — a scared, awkward little girl who got so lonely at lunchtime that she’d talk with her mother on a pay phone.
“I see similar things in my daughter,” DeCesari says now. Arianna was born in March 2006 weighing just under 3 pounds. Despite a comparatively easy time in the neonatal intensive care unit — the baby needed a ventilator for only 18 hours –– Arianna has had a hard time growing since she came home. She got sick immediately, required two hospitalizations and fell prey to every bug that wafted by.
DeCesari could not leave her job as a computer programmer because she held the health benefits for the family. To keep Arianna away from the germs in day care, she spent her salary on a nanny. Eventually her husband, Shawn, got a job with benefits and DeCesari left hers.
Meanwhile the little girl developed severe reflux and to this day has difficulty eating. At age 3, Arianna is physically fragile and very tiny: at her June checkup she measured 33 inches tall, and weighed 26½ pounds. She didn’t walk until she was 1½ and today still has to crawl to get up the stairs. She has asthma and catches colds easily. She has a stutter.
“She gets sick a lot,” DeCesari says. “Every single time she gets a cold she doesn’t eat for a week. They’ll weigh her, they’ll look at me, ‘She’s lost more weight.’ … Frequently she’s off the [growth] chart, not even on the chart. No matter what I pump into her she doesn’t gain any weight.”
Now DeCesari, who lives in Cumberland, is wrangling with the school system to get services for Arianna, facing long waiting lists for programs such as speech therapy. But Arianna is bright, already able to read.
Looking ahead to Arianna’s school days, DeCesari says, “She’ll be emotionally behind all the children her age, making her a target for teasing, and will have some attention and focusing problems. … I don’t see her childhood being an easy one.”
But DeCesari remembers that once she got to high school, her own social problems improved. She did well academically and attended college. She thinks prematurity hasn’t affected her adult life, except for some vision problems. And she hopes Arianna will be as fortunate.
AHH!!! I'm running around like a chicken with my head cut off!
My photography business is growing and thriving and I'm INSANELY busy! I do alot of my marketing on facebook so you can find me there most days and here almost never as I don't have much time.
My photography business site is a blog and you'll see me there nearly every day too. So if you want to check up on me or my girls, find me there!
I've been busy with life. I had to reorganize my priorities the last few weeks because EVERYTHING was out of control - I'm not kidding. I dropped the majority of those stupid MOMS groups and joined Flylady.net again. The house is clean, the kids are happy and, more importantly, I'm happy.
My photography business is booming right now - 8 sessions this month! Wow!
The kids are doing well. Daria is such a joy. She's so easy and happy. I'm so hopelessly in love with that girl. She went on a nursing strike over the weekend due to teething and I cried so hard on Sunday. I was so sad that she may be 'over' me. Thankfully she changed her mind Monday morning. It really made me realize what a special relationship we have.
Feeding Daria is so easy. ANYTHING we put in front of her, she eats! It's amazing. She eats anything and everything. I was very casual with the whole 'introducing foods' thing and now she's on all table foods. Arianna was so total different its not even funny. This morning I gave Daria some strawberries and cheerios for breakfast and hubby commented "We could NEVER give Arianna cheerios at this age", and he's right. Arianna gagged on EVERYTHING and was very fussy when feeding. Daria we don't even have to feed - she does it herself. She is her happiest when in the highchair eating. There will be no force feedings, no 'mesermizing with the TV' and most importantly - no tears from either of us. The difference between these two, as far as eating is concerned, is astounding. I marvel at it. I told hubby the other day "So this is what feeding a baby is supposed to be, fun?". Arianna wasn't fun, still isn't fun. Daria eats more than Arianna most days. There is seldom a meal that doesn't end with me yelling at Arianna to eat - seriously. I think she'd go all day without eating - but she'll drink milk all day long, still. I get sad just typing that.
Arianna is reading now - last week we were in a restaurant with a friend and Arianna took my menu from me and pointed at an item and said "Mommy, I want the fish", and sure enough, she was pointing to a fish meal. I think I jumped up and screamed "OH MY GOD!!! YOU CAN READ!!" I was so excited. She's so amazing to me.
3 years old is hard. She's so sassy and at times so unbelievably disrespectful that it makes me want to go crazy and smack the smirk right off her face. But I have to keep in mind that 'this too will pass'. I had to give up on the whole 'let her dress herself' thing too - she's just so reliant on me doing everything for her that even the act of taking off her shirt is cause for breakdown. Last week she broke yet another pair of glasses - she's getting new ones on Thursday but I swear I'm going to order the rubber ones cause when she's being a snotty little brat and throws them on the ground they can just bounce right back up and hit her in the nose.
She better win an Oscar when she gets older! She's an unbelievable drama queen - I really have NEVER met a kid that can be so over the top about things. Sensory situations are the worst. Stepping on something gooey or squishy will immediately lead to falling on the ground screaming. Brushing her hair is an epic event every day. I've actually gotten to the point where I put TONS of crap in her hair to keep it so silky smoothy that one of those head lice combs could get through her thick hair with ease. I should just shave her head.
So ya, things here are good - just INSANELY busy and that's a good thing. So much has changed in the 9 months Daria has been here, good and bad. I've learned alot about myself and that I have so much to work on!
I won't promise to be back blogging more cause I hate to break a promise... but I hope to catch an inspiration breeze soon :)
Here's a picture I took to commemorate Daria's 9 month birthday :)
... moms spend so much time taking care of their kids they rarely take care of themselves.
I've been extremely neglectful of myself since early last summer really. I've been dieting since I knew what the word meant - always having more than a few pounds to lose. I was heaviest on my wedding day - tipping the scales at 222 lbs. Thank goodness I haven't seen 200+ in more than 6 years now. But I need to get the baby weight off now! I did all I was supposed to for 2 weeks and the scale didn't budge. I hate that! Unfortunately the only diet I've ever done well on was the Optifast diet which is an all liquid, doctor supervised, very expensive diet. Seeing as I'm a stay at home mom now I can't afford to do Optifast again, but would love to.
But I use pregnancy as an excuse to eat whatever I want. I know how to diet and I know how to lose weight and what to eat. I'm not pregnant anymore so why can't I eat what I'm supposed to eat to lose weight? I don't have junk food in my house and I'm breastfeeding so the weight should be falling off - but I know my portion sizes are way off and I'm sure there are lots of hidden calories in what I'm eating/drinking (like the hot cocoa I just had). But I'm not exercising - unless wrangling the kids counts.
When pregnant with Daria I had insulin dependent gestational diabetes. My dad has type II diabetes. I never went back to have my post-pregnancy blood tests. I haven't used my glucometer since Daria was born - I'm almost scared to. I'm not losing weight and I'm not abnormally thirsty (all of which are common signs of type II - both of which were my dad's biggest symptoms) so I know I don't have it but I'm at a huge risk for it. I need to get my butt in gear!
Don't get me started on seeing my cardiologist. I'm so incredibly stupid when it comes to my Long QT Syndrome/defibrillator. I haven't seen mine since July (he left the practice and went to another) and my defibrillator is on recall status. I made an appointment for 2/6 and feel like a fool for not seeing him sooner. I'm actually in the most vulnerable period for LQTS (post partum) so I should know better!
Like I was after Arianna was born, I'm sure I'll get fed up soon - only this time I'll have to do all the hard work myself. No special diet to save my butt this time...
As I've mentioned before I'm starting a photography business this year. I want to enroll in an online business course geared toward photographers but seeing as I don't bring in an income anymore I don't have the money.
As luck would have it she is running a contest this month and asked us to submit a picture explaining why we deserve a spot in her contest. Can you help by voting for my picture?
My picture is #1, scroll to the bottom and vote for #1 please, pretty pretty please - with a cherry on top! :)
Today I ordered $175 worth of photography prints from the lab. These include the fabulous pictures you see below. Problem is that when I edited them they weren't edited using the colorscape for my newly calibrated computer monitor. So the color will be ALL WRONG (such as the Arianna picture below, its way too blue). What's even worse is that this includes our 'christmas card' picture that goes out with our newsletter every year. And in the newsletter I mention how I'm looking to build a portfolio for a possible photography business and hey, look at the great pictures I took in the studio I rented... but what they see will be a very poor representation of my work/talent... all because I didn't set up my color in photoshop. Lovely.
I'm so mad at myself because I can't tell you how much work I've been putting into my photography these last few months and getting into the studio (now 3 seperate sessions) has really popped my work up to another level and I finally feel like my hard work is paying off... and I feel I can finally show people... and now this.
So anyway - I've put off doing this for a few months because I wasn't sure I was ready for the criticism, but I think I'm ready now. So... introducing... one of the first shoots of my photography business. I'll be spending most of 2009 'portfolio building' (aka. practicing on willing participants). My focus will be child and family portraits, everything from maternity to HS Seniors and more.
The only way I can get better is to get feedback from people. I want to know if this is something you like or something you would purchase if this was your own family (instead of mine LOL). If I don't know what people want, I don't know what style to shoot.
Last week I brought Misty, my beautiful cat, to the animal rescue league. I had snapped. She's a beautiful cat and very affectionate, but she has a bad habit. She urinates on blankets, clothes, fabric when she feels her litter box isn't perfect. We just bought new litter boxes and she hated them. Last Wednesday afternoon I'm working with Daria on some tummy time and Misty pees on the blanket right in front of her face. I didn't hesitate to throw her into a cat carrier and drive 40 min. to the rescue league. She was obviously distraught in the carrier and confused when we got there.
I cried the entire time. This is not me - I rescue cats, I don't send them away to live in a cage and possibly get put to sleep. Misty is a lovely cat, so affectionate and loveable. But I want to be able to open my bedroom door again. I want to be able to put Arianna to bed and ensure that her blankets don't smell like cat pee. I don't want Daria to be crawling in cat pee. I know I did the right thing but its very hard.
I had tried for a few weeks to find a rescue that would take her but everyone was full. I even put an ad in the local paper. Of course someone called about her two days after I brought her to the rescue league. The rescue league even gave me a number to call to check up on her but I can't call for some reason. I hope she's ok but I know there's a good possibility she isn't. A cat that urinates inappropriately isn't a prime adoption candidate and she's probably freaking out in a tiny cage - can't say I blame her. I just wan to believe in my heart/head that she's doing ok there and will be adopted soon.
But for some reason I can't stop thinking in the back of my mind how I could have avoided this and could have ensured her safety better. I feel like I failed her and that makes me so sad. I really did love so much about my Misty kitty and even typing this has me in tears again. I just can't put up with my house smelling like cat pee so often.
Worst part is that TiSan our male cat obviously misses her alot - he spent a few days moaning around the house and he's much more aggresive about his needs for attention now. I feel sad for him too, he had fun with Misty.
Last week my camera club chose this picture of Misty to send to a regional competition... it was very bittersweet news for me.
I know I'll look back at this situation and know I did the correct thing but right now it hurts. Bad.
Go ahead, wish me a happy birthday (cause my hubby hasn't yet), I'm crazily celebrating it by driving down to KY for 16+ hours tonight... just the way to spend a birthday!
It's hard to have adult conversation when you're a SAHM (stay-at-home-mom) so I welcome the chance often, when it comes.
Daria loves the supermarket - I think it's the lights. It's one of the only times that she actually awake and not screaming.
Since Arianna is at daycare on Wednesdays I usually do my grocery shopping then. I spent 90 minutes at the grocery store today - I don't think I've ever spent that much time at the grocery store before.
Bringing a baby to the grocery store brings out all the 'grandmas'. They all think Daria's the best baby (and she is, of course!) and always want to sneak a peak.
Today I talked to one of them for nearly 30 minutes. I've never done that at the grocery store before either.
I think mice are super cute... when being eaten by a snake that is.
I don't, however, think mice are cute in my basement... and we seem to have a big problem.
When we purchased this house and had the inspection, the inspector told us "You have mice. All houses have mice. I don't see any damage so its probably just a seasonal problem.". When I had the house exterminated for carpenter ants this summer the exterminator told me we had mice. But he went one step further and told me what to do - so we went to Home Depot and bought some bait to put out in the basement.
I had Shawn put several packets in the laundry room which has several 'outlets' out of the foundation - meaning several 'inlets' for mice. Also put several in the drop ceiling in the adjourning room.
Not only were the packets opened and moved from where they were placed but they were EMPTY.
Oh My God.
5 days after the packets are opened we are supposed to start seeing dead mice.
Oh My God.
My laundry room is down there and so is my scrapbooking room with the computer that I do all my photo stuff on. I can't go down there now! My cats can't go down there and no way the kids will go down there. The bait stays active in the mice even after they die so the cats can get sick and mice in general are yucky so the kids shouldn't even see them yet come in contact with them...
But God help me if I see mice up here on the living floor.
Our house is entirely electric - electric heat, electric appliances etc. The only non-electric item is our hot water, which is propane.
Our monthly budget for electric is now $350. It has gone up $200/month in the 2 years we've lived here.
This has to be wrong. The electric company says no. I call today to get us back on the monthly payment plan so we don't get socked when we turn on the heat November 1st. (and yes, I will stand to 11/1 without heat in all the rooms but Daria's and only hers at night).
Yet I call and the meter numbers they have are wrong. The meter registration number is no what they have either. So someone comes out tomorrow or Friday to look at the meter and then its an ENTIRE month before we know what our monthly useage is and only then can we get on the budget plan... and only then can we get an energy audit.
We must have some alien life force sucking all the electricity in this house - I talk to my neighbors and our electric is double what theirs is. I just don't want to get socked with yet ANOTHER $1200 bill in August.
Alas though, its comparable to oil prices right now...
Yes, the past week has been sparse for posts but I have a good reason. We had Daria's "sip n' see" on Sunday - it was an 'open house' style party where all our friends and family who hadn't met her yet could come by and meet her and share in some food (really good food too...like canoli's... yum!). We sent out invitations with the birth announcements about a month ago.
It was in place of the 'after party' you would typically have after a christening... since we're not getting the girls christened in the catholic church, much to my parents/families dismay. At least they've stopped harassing me about it though...
But in order to make it to Sunday there was a TON of stuff that needed to get done. We had to clean first and foremost - and this is something that hadn't really been done since before I went on bedrest like 4 months ago! So there was alot to do. We also had to finish Daria's nursery which was a feat in and of itself, trust me! So we (ok, mostly myself) were incredibly busy and this left no time for blogging, or checking email for that matter... I'm almost under 400 emails now, its progress!
So anyway, here are before, during and after pictures of Daria's nursery (click on them to see them bigger). I have to say I'm really pleased with how it turned out and my family is convinced I should be an interior decorator now LOL!
Before
During and...
After
Now if I could only get her to sleep in it, it would be the 'ideal' room (eye roll)...
So I've made the decision to get more serious about my photography. I actually made the decision last year but I couldn't decide what the best avenue would be.
So last night I attended my first camera club meeting with a local camera club. It was the second time in 6 weeks I'd actually left the house without my babies... it was awesome! hehe
Although everyone is an amateur they are all really fantastic photographers and I am really looking forward to learning more from them.
This weekend they are sponsoring a photo marathon/contest for fall photos and the prize is a large gift certificate to a local camera store - I can hear a Tamron 17-55mm lens calling my name! LOL
They participate in lots of contests for the new england camera club council and plan field trips and studio time (for those of us unlucky enough to not have our own studio...). I'm really looking forward to learning more and honing my skills.
Today my father came to the house to use our computer to check a few things online. He stayed much longer than I thought he would and we talked about lots of things. Somehow the subject got to homeschooling and he surprised me with his support of the concept. I was so excited I immediately started talking about what we're doing with Arianna and how we were thinking about continuing it past preschool if all goes well.
I was very pleased that he thought it was a great idea. I've been so reluctant to mention anything to my parents because of what I thought their reaction would be. I'm glad to learn I was wrong about them...
The unfolding events in the financial markets have me sick.
Despite having visitors from Wednesday to Saturday I was glued to the television to see what the government was about to screw up... again. It's no secret that the Bush administration is not my favorite - as a matter of fact I'll go as far to say that this administration has ruined much of what America stands for and fixing it will take generations - not years.
The foreign policy inacted has made more enemies than friends and done nothing to actually help the american people, if anything the killing of 4167 American young people has hurt our nation in ways we won't fully understand for many years. Suffice to say there are many families hurting.
Now, let's take a look at the current 'bailout' the government has proposed. More than $1 trillion in debt - this doesn't include debt already accrued or the cost of the war. Never before have the American people gone so far into debt without much to say about it. There were no votes made by the American public. I know our Congress people are our 'voices' in Washington but how many people in the US even know who their congress person is or how to contact them? Personally I've called my Congress people several times, mostly on issues concerning animal rights - but you can rest assured they have heard from me on this issue because I'm pissed off!!
Please explain to me how any of this is different than Hugo Chavez nationalizing companies in Venezuela.
I guess he does it by force.
We just do it by decree.
I'm pissed off that the government set up the credit lending industry to fail like this. I'm pissed off that they knew it and failed to stop it. I'm pissed off that the people elected by the American people failed to protect them.
Even more so I'm pissed off at the majority of Americans! If this applies to you I'm sorry if you are offended but you need a wake up call.
When I first saw this comercial years ago I thought it was very funny. Now I just find it sick because its so true. There are far too many Americans who are living by the seat of their pants with no savings for 'a rainy day'. Prior to the governement changing the lending rules people actually planned for emergencies - now people have an extra credit card for emergencies. Personally I have an account at Emigrent Bank with money for emergencies. I haven't had to touch it for nearly 3 years, but its there if I need it. Can you say that you have money for an emergency?
Today I sent $1500 to Honda Finance to pay off my husbands car. Since January 2006 we have been in a 'debt paydown' because like the majority of America, prior to then we were living from pay check to pay check despite making WAY too much money for that. With Arianna on the way I knew I may want to stay home with her but couldn't do that with the current loans and other debt we had. So we started paying it off and living within our means - what a concept! Since that time we have paid off $45,935.52 in various debts. We were very fortunate to not own our home when we started and had a very good income - but we aren't unusual, lots of Americans could do that too. We owe $9,000 on my 2006 Toyota Corolla and then we are debt free minus our home. I'm very proud of us! We did it all while getting our first house, having two kids and the associated cost that goes with them. We have no credit cards or open lines of credit and both have credit scores over 800 - we did it by making payments on time/paying stuff off, not by opening new lines of credit.
But when I talk to other people, especially in my generation, they don't understand why we would want to live debt free. They actually tell me that having debt is good. Really?? Good for who? You? Heck no! But it sure is good for the credit company. Especially when there is a run on the market and suddenly the banks are failing, a la last week and the cause of the great depression.
For years now 100% mortgages have been the norm and yes we're one of them - we have an 80/20 loan but when we bought we made sure we could afford the payment on just my husbands income. But I see many more problems than that - even in my parents generations. For example, we have an old TV - its 10 years old. I purchased it at WalMart for $250 10 years ago. My Dad gives me crap about not buying an HD TV or at least one with inputs for our stereo system. But we don't have $1200 to shell out on something as trivial as a TV, especially when we MIGHT watch 10 hours of TV per week. He tells us to put it on a credit card/store charge account. I laugh considering he just paid off the leins on his house fromt he IRS.
We have a very strict budget - we give ourselves allowances and only have a certain amount of money per week for gas/groceries and we put aside $400 per month into savings. My Dad thinks its odd that we live so closely to our budget. He always said if he needed more money he always worked some overtime. Hubby works overtime but its to pay for our health insurance, not our budget because we actually live within our means.
But then you have Americans that have two SUVs, a 100% mortgage, several credit cards, expensive clothes and material things, much like the commercial above. These Americans piss me off - not only are they perpetuating this faux 'American Dream' but they are the ones that are being forclosed on causing the banks to fail and now causing the rest of America to bail them out. I'm going into debt for you because you can't live within a budget and within your means.
I'm hoping to be able to stay home with my kids - we're in a position to do so now that the only debt we have remaining is my car. We've worked VERY hard to do this and I'm very excited to be there for all my children will experience when they're young. With the current events unfolding the housing market will tank and we won't gain any equity on our home for many years. Our HELOC (home equity line of credit) changes over from interest only to principal only after 5 years, which is 3 years from now. It was originally our plan to refinance the house to get rid of the $50k HELOC but we won't be able to do that now. Will we survive with the $500/month payment increase? Yes, I'll have to get a job at that point but yes, we will survive - but it SUCKS that we have to do it that way because so many Americans decided to finance a house they couldn't afford.
I hear so many people saying but its the mortgage companies that set this up. Bull crap! Your an adult, you knew, when you signed the papers, that you couldn't afford that house unless it was interest only. You decided to live outside your means - the mortgage company was simply the pied piper giving you the means to do so.
And now your ruining my hard work by tanking the banks and causing the housing market to lose so much value that many people are losing the only equity they have.
At least I'm already saving and planning for that raining day - maybe everyone else will too? Maybe they'll decide to pay cash for cars (or at least don't finance 100%) and cut up the credit cards?
I think that's wishful thinking, but at least I'm already there.
My mom is still in the hospital. The PICC line went bad and now her entire arm looks like one big bruise. What should have been day surgery has turned into a week in the hospital. To top it all off, if they can't place the PICC line she'll end up going to a rehab facility for 3 months.
Take care of your teeth folks - don't let this happen to you!
Anyway... I couldn't let an entire week go by without seeing her so I drove up to their house and drove into Boston with my Dad. This, of course, is no small feat.
She asked me to bring the kids but I really don't like the idea of bringing a toddler, who is getting over a cold, into a hospital - especially a kid that gets sick so easily. My problem wasn't with her anyway, she could easily stay home with dad - it was Daria. She's not taking a bottle well and I was worried about needing to feed her. My mom said to bring her. Um... no! She's 3 weeks old?! Why would I bring a newborn who's battling a cold to a hospital with sick people?!
So visiting her was going to be difficult. Well, Shawn was up to the task of handling the two of them AND bottling feeding Daria.
Our visit was nice and Mom really appreciated us coming by - she really didn't want us to leave, she's really bored there but parking is $12/hr. in the garage so we couldn't stay long.
Shawn did well, even doing a few small chores I asked - Daria drank 4 oz. from a bottle! Of course, now nursing isn't going all that great so I'll be devoting lots of time to nursing and avoiding time away from her for a while - she's not ready to transition between the two yet.
And yes, hubby thinks that shirt he's wearing is hillarious. I, on the other hand, plan on throwing it out when he's not looking...
"There are two ways to live your life. One is as though nothing is a
miracle. The other is as if everything is." -Albert Einstein (fellow
preemie)
“A child’s outcome is directly linked to their parents and their environment.”
“Motherhood has relaxed me in many ways. You learn to deal with crisis. I've become a juggler, I suppose. It's all a big circus, and nobody who knows me believes I can manage, but sometimes I do.” - Jane Seymour
"Anyone who has ever said 'don't cry over spilled milk' has never
spilled a bottle of breastmilk they just spent 20 minutes making"
