Arianna's new glasses

Arianna at 3.5 years old

And what post would be complete without some Arianna pictures!





To say I'm proud of her would be an understatement, she's amazing to me :)

I'm published!

She had a hard time growing

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.

I can appreciate

There are days when I am more appreciative of how hard some things are for Arianna. Of course she doesn't know its hard, it's all she's known, but one day she'll realize it.

Arianna got a bad stomach bug Sunday. At 3 PM she was running a fever of 103. I was running out the door to photo session so I gave the tylenol to Dad and told him to watch her. I got home and things were ok, fever broke. 11 PM she was in bed and violently vomitted around her room. Fever back up to 103.6 and she is sweating and shaking. I put her in the bath, send Dad to the store to get ibuprophen, lay Arianna on our bed to watch Family Guy (ya, well, it was the only cartoon on at that time of night) and we clean up her room.

It's a typical childhood illness - she'll survive. But not before losing a pound or two and essentially stopping eating for a week.

Daria is not sick. As a matter of fact Daria hasn't been sick since she was 3 weeks old. She may get a runny nose but we haven't had to suction her nose, give her breathing treatments, pump her full of calories or worry. We haven't had to stress with Daria!

I'm crying just writing this. Arianna has had it so hard. We have had it so hard with her. I'm not kidding when I say that there isn't a meal that goes by that doesn't either have major cajoling by us or ends in tears. It's ridiculously stressful! Daria, on the other hand, eats ANYTHING and EVERYTHING we put in front her - no matter the amount. It's incredible! I don't know what to do with a child that is as happy as her. I don't know what to do with a child that simply EATS and easts well! She's so happy and EASY...

Life hasn't been fair to Arianna. I know it could certainly be worse but it could also be better... alot better.

My girls

Today was another preemie dig at my heart & soul.

Arianna had her 3 year pediatrician appointment.

She's 36" tall, finally. But lost weight, again. She's 26 lbs. 1 oz. She has a cold, no surprise, but I think we've come to the conclusion she has asthma and will need to be on medicine now. Although this is totally no surprise to me I'm bummed. Being a preemie has hit her hard for being a nearly 29 weeker. Heck, I was only 2 oz. bigger than her when I was born at 30 weeks and I haven't dealt with what she's dealt with. It makes me sad and feel guilty at the same time.

On the bright side though we're working hard on our phonics and math and she's doing great. She can read a few words and what she can't read she can at least sound out phonetically and sometimes figures them out. She's really amazing me with the attention level she has for this.

Gross motor wise, well... she's really far behind. I see it more and more. She goes to gymnastics and can't do anything the 2 year olds can do. Her gait is really immature for a 3 year old, she can't/won't jump, can't/won't 'do' stairs and is very clumsy - to the point that I think she's a danger to herself. But, as her pediatrician pointed out, it's not delaying her advancement so we'll just let it 'get better'. Well how can it get better without help? I'm really concerned about it and don't feel I'm getting much help.

She still stutters, especially when asking a question, but apparently they don't do anything about it until age 5 and even then its done through the school system which is backlogged, under staffed and unorganized.

Daria is 7 months now and weighing in at a very hefty 19 lbs. She's in the 90th percentile for weight and 75th percentile for height - she's just a moose! She sits up on her own fully now, gets up on her hands and knees for crawling (but thank god doesn't do it yet), is experimenting with solid food and today she said 'mama'. She has the most infectious laugh and is totally a dream baby - sleeps well and hardly ever fusses. She nurses avidly and makes me so very happy - she's my sanity saver when Arianna is 'in a mood'.

What post would be complete without pictures of my babies? I took these last week at the Roger Williams Park Botanical Gardens.

They like me, they really really like me

I was interviewed for an article on pregnancy after having a preemie. The article is here.

Unlike Glad, Jennifer D of Cumberland, R.I., knew when she was pregnant with her first child that she was at increased risk of giving birth prematurely. Due to a bout with cervical cancer at age 18, she had already been diagnosed with an incompetent cervix. In addition, she'd been a preemie herself – born in 1978 at 30 weeks. In spite of all those warning signs, she says her doctor didn't take any special precautions, and her daughter, Arianna, now 3, still has issues related to her birth at 28 weeks.

When Jennifer got pregnant with her second child she went back to the same doctor armed with more than a year's worth of research. She wanted to discuss having a procedure called a cerclage, often used in cases of incompetent cervix, where the cervix is stitched closed. She also wanted to discuss other options for preventing prematurity, such as progesterone shots and more frequent ultrasounds. Her doctor, however, still did not take her increased risk seriously.

"I felt like I'd hit a brick wall when I went back to my original practice," Jennifer says. "When I told them what I wanted to do to try to prevent another premature birth, they didn't want to commit to anything. They said they couldn't say what they'd be able to do differently than the first time. I told them I was sorry, but I'd have to find a new doctor."

The new practice worked closely with Jennifer. She had a cerclage at 13 weeks, supplemented that with progesterone, and was scheduled for weekly appointments and ultrasounds. Her second daughter, Daria, was born healthy and full-term.

I feel so spe-shell

Prayers please...

Saturday night my cousin Kim gave birth to boy/girl twins at 27 weeks.

Her little girl was 2 lbs. even and the little boy was 2 lbs. 2 oz.

They're scared beyond words and I'm waiting to hear more about how everyone is doing.

Many of you who read here know what she is going through and prayers are definitely appreciated.

Thank you.

Playgroups...

Today I took the girls to our first playdate with a local moms group I found. The meeting location was only around the corner at a local farm. The lady that owns it puts on a story time/craft time every tuesday morning at 9:30 AM (I, of course, thought it was 9 AM so we had to wait 15 min. for anyone to even show up). Best part was it was free. Since Arianna loves nothing more than to read books these types of events are great for her.

They read a book about dinosaurs who eat alot and then read a book (and for the life of me I can't remember the name, its a well known book) about an old woman who ate lots of food at Thanksgiving and then we made a paper bag puppet of the old woman and they gave us little cut outs of the all the food in the book for the puppet to 'eat'. Arianna LOVED this craft - she kept going back to get more food pieces instead of taking them out of her bag!

I was disappointed in the playgroup though. After the story time/craft time was over we all stuck around and as it turns out there wasn't another child there over 1 year old so I ended up spending all my time with Arianna, to Daria's dismay (poor kid, I really feel she gets the shaft 90% of the time). The organizer of the group assured me there really are more kids her age and I hope we meet them soon. I really felt out of place - one kid too old and one kid too young. The worst was when one mom asked me about my experience with Arianna introducing food. I hate going into too much detail about her with people I don't know...

Do I tell her we didn't introduce solid foods until 10 months because her reflux was so bad? Do I tell her we didn't use formula and I pumped for 13 months (some moms are sensitive to that for some reason)? Do I tell her about her prematurity and her failure to thrive? Do I tell her she's 32 months when she hardly looks old enough to be 2?

This is hard for me. I love my daughter and I don't want to say anything that will change people's opinion of her before they even know her.

Arianna did really well the entire time - only throwing one small fit before story time began and I was able to get her to calm down before her 'drama queen pose'. I was really proud of her... but disappointed that there were no kids for her to play with.

Daria also did fabulously - didn't cry once and even sat on my lap being very cute for a while. She was extra good when I took Arianna to the bathroom - everyone said she didn't cry at all. Very nice to hear!

I really hope that the next playdate has some more kids her age to interact with.

Party Time!

Last weekend we got to meet Jess and her cute kids at her twins birthday party! It was so much fun and I loved getting to meet her incredible family and friends.

Arianna had tons of fun with the ball pit!
Daria enjoyed... um... sleeping.

Birthday Girls - Morgan and Riley, riding the kids train!

Jess and Aiden - I just love this picture!


Riley, enjoying lunch... until...
Mom found her to plant a kiss! :)


Birthday cake time - they look so cute (and clean...so far)

Here comes big brother to um... help LOL
I don't think they were getting messy enough for Jess, so she tries to help - it worked! LOL

We had alot of fun and enjoyed a TON of great food. Daria woke up toward the end and enjoyed being passed around to all the gals at the party so they could get their 'baby fix'. I admit, its nice at this age, its when they get to the bratty toddler stage that it ain't so cute no more! LOL

Can't wait to get together again soon Jess!

Arianna Update

This week we are starting our homeschool preschool again after taking the summer off. This poster shows what we are learning about this week - the letter E, counting and the number 5, the shape Octagon, the nursery rhyme "Bobby Shaftoe" and lighthouses and beacons. We'll be taking a trip down to Beavertail Lighthouse near Newport, RI later this week or this weekend as the special trip associated with this weeks theme.

Arianna knows all her letters, upper and lower case, can count items to 10 but knows all her numbers up to 16 (20 if you don't ask her to say them in order), all of her colors and most of the shapes that are covered in this curriculum - so the majority of this is more for fun than anything else. We're still working on counting but she's vastly improved.

I'm trying my best to keep learning fun even though I want to run a million miles toward reading and writing - she's just not ready and is still too young. I've invested in some 'hooked on phonics' workbooks and visited the parent/teacher store for some books on learning to write so we'll start there. She still doesn't know alot of the items pictured in some of these books, so we'll start working on that first.

Arianna has hit a big brick wall as far as speech is concerned. My husband tells me not to worry but its not going away. Arianna has developed a severe stutter - especially when asking a question or requesting something. Her EI caseworker was at the house this morning and is finally going to set up an appointment with a speech therapist because we both feel she's regressed with her speech. It's almost like her mouth is going to fast for her brain. When we tell her to slow down she'll enunciate much better (all the while pointing her finger at us in rhythm) but overall she's harder to understand. She has a very vast vocabulary and I think her language explosion has happened too fast for her. I hope its something she will soon outgrow but its affected her all summer and now I'm worried. Monday she stuttered with nearly every sentence - it's taught me alot about patience...

Weight wise she is sitting in at 24 lbs. 4 oz. She has taken, what I hope is, a temporary dive in her eating habits because we pulled her from daycare (where she would eat awesomely around the other kids) but she's also been battling several colds since we pulled her down to one day a week. Ironic she would get a cold every week she's there though...

This puts her at the 5th percentile for her actual age - this is the curve she's been on all year and I'm not going to fret about it too much. Even when she was in daycare full time and eating like a horse around the other kids she hadn't gained much weight so this must just be her personal curve. She's lanky and I'm just going to have to live with it. This is hard for me as I've battled weight issues my entire life - I'm not used to the idea of having a kid that doesn't has the same problems.

Nap time and bed time are a real struggle for us. She insists on someone holding her hand until she falls asleep. This can take anywhere between 10 - 90 minutes every night. When Daria's room is finished she is getting all new furniture and we hope to start a new bedtime/nap routine with that change... we need to - I'm not going to keep holding this girls hand when Daria starts getting into things.

Otherwise my being home full time has been a really good change for her. We can focus on potty training, which is going well again, and on her eating habits (which are more consistant again). We're now getting back into her preschool stuff and hope to start working on alot of other stuff associated with learning too.

This fall/winter promises to be challenging for me, but I'm up to the task!

Special preemie

I wanted to take a moment to tell everyone about Landon, an preemie that I 'met' on the internet shortly after Arianna was born. He was born at 30 weeks and had a very rough road - as it turned out he had a rare mitochondrial disorder that is incurable.

His family lives in Missouri and is trying to move to Houston to be closer to the only doctors that have been able to help him. Please check out his website and consider making a donation to help their move. His mom is an amazingly strong woman that I can only hope to emulate.

Preemies in school

I have been doing more reading in the preemie internet community and have seen alot more talk about 'wait until your preemie gets to school to see the problems s/he has'.

This got me wondering. Why does that matter? Why does it matter that s/he is not on equal footing with peers of their age range? Why does it matter that s/he has many disabilities that could be a part of their early birth?

It matters because we are trying to fit our children into a pre-determined mold. We are trying to make them like everyone else instead of tailoring their learning experience to their individuality.

This is something I have struggled with lately - mainly because I've watched how much faster Arianna is picking up her preschool curriculum than the older children at her home-daycare. I'm very worried that when she starts school she will be smaller than all the other kids yet be more advanced academically and as a result will waste time in school where she could be learning more rather than waiting for everyone else to catch up to her.

She will be 2 years adjusted at the end of the month yet knows all her letters and counts to 20 on a regular basis - she actually corrects the other children when they get it wrong. She knows many nursery rhymes and will sing them (or demand we sign them to her: "Mama, sing Three Blind Mice peeze"). This is wonderful - I'm so glad she is learning so well and loves it! But at the same times its not wonderful - she is not at a maturity level for that type of learning environment. Much like myself. I was always academically on par with my peers but socially immature and I suffered for it.

I already know Arianna and I are very different people personality wise - she won't be a push-over like I was. She is very much a girl in a number of ways but she won't be a blubbering mess if someone says something mean to her - she'll usually be mean right back, which is great. But I don't want her academics to become stale because everyone else has to 'catch up' to her.

What's the solution? Not enrolling her in preschool for starters.

I will be leaving my job when the new baby arrives to stay home and will work on all the typical preschool requirements with Arianna on my own. She will do great with one-on-one learning, that much I know. But what happens when I have to release her to strangers who won't show the same love/enthusiasm/dedication to her learning that I do?

I don't know, but as each day goes by homeschooling looks better and better. There are many obstacles to overcome (social stigma for one, there are very few homeschoolers in my area) and my own personal apprehensions to work through but it does seem like an ideal solution to a problem that many parents face - prematurity or not.

Tailor the environment to your child rather than forcing them into a mold that they will never fit.

Public access to NIH research!

Public access to NIH research


FINALLY!!!

I don't have to pay money for abstracts anymore - I can get access to NIH funded research when I want!

This is HUGE folks... really huge. I no longer have to wait years to find out what LQTS research has been going on. I no longer have to wait years to find out what new prematurity related research is done...

Huge, really huge!!!!

They're not going anywhere...

So Arianna is in the last stages of 'snot fest'. I brought her to the pediatrician earlier this week and was given an antihistamine for her nose - she was surprisingly good though the whole appointment. I put her on the scale just before we left, clothes and all and she was 22.4 lbs! So without clothes she should be AT LEAST 21.5 which would be a gain of 1.5 in a bit more than 2 months. Not fantastic, but I'll take it - its been horrible to get her to gain weight despite a concerted effort of nutritionist/nanny/parents/grandparents, cases of pediasure and GALLONS of eggnog (I'm totally not kidding on that last one).

We had our visit with our EI caseworker yesterday and she reminded me we're coming up on Arianna's review. She's doing well as far as EI is concerned and I'm fully expecting her to be dismissed at her review...

Wendy, her caseworker, told me that because of her failure to thrive diagnosis (which won't leave anytime soon, obviously) she qualifies for services indefinitely and in RI would qualify for an IEP and cost free preschool next fall (if she is still failure to thrive). This would be wonderful as preschool is expensive here... but I almost feel like I'm abusing the system. Arianna hasn't had any actual services, ever. We meet with Wendy once a month and play with toys and Ari always does exactly what she should - and actually with fine motor/cognition she is ahead, yesterday she put together a Mr. potato head, hat and all! She was evaluated by PT a few months ago and didn't qualify. Nutrition met with me once in the early summer and said 'yep, you know what you're doing'... she had OT when she was 4 months as I had real concerns over her lack of suck (thus the end of my attempt at direct breastfeeding and continuation of 13 months of pumping) but she's done well and Wendy doesn't think there is much OT will be able to help us with as Arianna eats a variety of textures, just not a lot in any one session, which we all believe is due to her reflux.

So Arianna doesn't use EI except to watch for problems - I can withdraw her if I feel its necessary. When I see Arianna with her peers I don't worry too much about her at this point - socially she handles all interactions well (even that evil little boy at the pediatricians office who wouldn't share). I know she needs more interaction with her peers but weighing that need vs. her health needs has proven tricky - for now we're taking the safe route and will try to keep her out of the hospital this winter.

Socially/Personally I have real issue with people 'abusing the system' and I don't want to fall into that category - but I pay taxes so I should be able to use it and if it will help Arianna I should just do it right? The preschool she would go to would be the town run one and you can only get into it with an IEP so she won't be with 'normally developing' children - so is there an advantage to her going there if the only reason she'd have an IEP is that she can't gain weight?

Then in the back of my head I think "my parents never had to deal with this and Arianna is doing better than I was...". But again my biggest concern for Arianna, right now, is social development...

I never thought, when I was pregnant, that I would have to think about these things. It's really not a big deal and many would be envious of our position, its just totally unfamiliar to me and I'm not exactly sure what the best answer is...

Newborns With Congenital Heart Disease Have Widespread Brain Abnormalities

Here's a 'information chicklet' for anyone interested.

Susan Jeffrey

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.

NEJM Abstract:

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!