Brings it all back

Somehow my crazy email in box moved to the bottom (really old emails). I noticed that the emails were my announcing the fact that I was pregnant with twins, and then an email from someone in my local twins club in response to the following email I had sent out:

Hi,
I am a new member, we are (were?) expecting twins due 1/4/05 after a lot of difficulties in getting pregnant. After my amnio at CPMC on 7/26 the sac of one twin ruptured and I've been leaking fluid since. I've been on complete bedrest and going a bit crazy. At an u/s this last tues one twin showed minimal fluid left. I am continuing to leak amnionic fluid which means most likely the sac is not healing. We are waiting until next tues (tomorrow) to check again.
The amnio was done with one needle stick. I was doing great before the amnio. Obviously we are having major regrets.

Does anyone have any similar stories or suggestions? At this point the prognosis isn't looking good.

pre term labor and infection are the fear for the healthy twin. I am only 18 weeks (19 weeks Wednesday) as of now and lungs are not developed yet, the sac ruptured at 17 weeks.
We found out via the u/s before the amnio that it is 2 girls.
Thank you.
Liz McCarthy

Takes the wind out of me all over again just thinking about it.

And an email with my plane ticket to fly to tampa florida when we tried our last ditch effort to try to seal my amniotic sac (which didn't work obviously). (if you didn't know we tried to do an amniopatch, read the first post in my blog)

it was like looking at a snapshot in time.

How I wish I could roll back the clock to the day of my amnio....7/26/05.

Worry, Worry, Worry

I know all moms worry about their children. But I do happen to think that moms of micros have it worse, here are some reason things I've been reading: (courtesy of my friend Stacey and her blog: the Preemie Experiment).

This is what keeps me up at night. My gut tells me something is "up" with Kaitlyn. Yes, I know, many of you say, just appreciate her for what she is. And I DO, oh I really do, but I still can't help but worry and want to find solutions. that's me. that's what's gotten me so far already in helping Kaitlyn.

Directly from Stacey's blog (hope it's ok stacey):

Interesting article in the October 17th issue of Pediatrics.http://pediatrics.aappublications.org/cgi/content/abstract/peds.2008-0768v1?papetocI only have access to the abstract and I never know what I can reproduce legally so here is a snippet of the article...OBJECTIVES. The objectives of this study were to examine the circulatory changes experienced by the immature systemic and cerebral circulations during routine events in the critical care of preterm infants and to identify clinical factors that are associated with greater hemodynamic-oxygenation changes during these events.CONCLUSIONS. Routine caregiving procedures in critically ill preterm infants are associated with major circulatory fluctuations that are clinically underappreciated and underdetected by current bedside monitoring. Our data underscore the importance of continuous cerebral hemodynamic monitoring in critically ill preterm infants.

And some comments from Stacey's blog:
"14 years of preemie-l and 12 years of preemie-child have given us a sea of substantial, varied anecdotal evidence so that anyone with half a brain or an iota of observational skills can see that in the majority of cases, preemies carry life long impacts of their lost gestation. While there ARE kids who do well, graduate from high school and college - create meaningful lives for themselves, there parents can describe the ways that that represented enormous triumph. Many more parents, sit in dark living rooms wondering what "tomorrow" will be like for these representatives of a vast experiment they didn't really know they were being unwitting participants." - S

"At any rate, the research indicates that the effects of brain damage/abnormality in preemies (about 100% in preemies born below 26 weeks)either causes psychiatric problems to worsen or first become apparent in adolescence. Term-born control groups are used in these studies so it is almost certainly prematurity-related brain abnormalities that cause the problems. Other studies have shown a decrease in IQ between ages 8 and 15, and a very large decrease in the percentage of children considered to be normal (this among VLBW preemies). " - Helen

"Bradley S. PetersonColumbia College of Physicians and Surgeons and the New York State Psychiatric Institute, Unit 74, 1051 Riverside Drive, NY 10032PetersoB@childpsych.columbia.edu:
"Premature birth can have devastating effects on brain development and long-term functional outcome. Rates of psychiatric illness and learning difficulties are high, and intelligence on average is lower than population means. Brain imaging studies of infants born prematurely have demonstrated reduced volumes of parietal and sensorimotor cortical gray matter regions.

Studies of school-aged children have demonstrated reduced volumes of these same regions, as well as in temporal and premotor regions, in both gray and white matter. The degrees of these anatomical abnormalities have been shown to correlate with cognitive outcome and with the degree of fetal immaturity at birth.Functional imaging studies have shown that these anatomical abnormalities are associated with severe disturbances in the organization and use of neural systems subserving language..."

And one more:
"On top of the above things mentioned by Helen, I also ran across a press release today about a study showing that young kids who undergo general anesthesia have an increased risk of behavioral and developmental disorders.This study looked at routine hernia repairs, not really sick kids. I haven;t tracked the study down yet, but here is a link to a news article:

http://www.medicalnewstoday.com/articles/126291.php
Now, if general anesthesia impacts the brains of average kids, what about preemies whose brains have lost that critical developmental time in the womb?"-Kristie

Stacey's daughter was released from her regional center at age 3, many of her issues didn't show until she was older.

I know this may open a can of worms with comments, but I can't help but worry, but know, dear readers, that I still enjoy every minute (well not every minute) with my amazing little girl - Maybe Kaitlyn will be fine, maybe she won't, I love her dearly either way, but the worry, that's motherhood right?

Last Therapy

I may have posted already, but as Kaitlyn turned 3 a few weeks ago, she finished her Therapies that were covered under the Regional Center.

She bonded so much with her therapists, that I took a few pictures of them on their last day together.

Amazingly, on her last day with Rebecca (from Easter Seals), Kaitlyn smiled on cue for the camera for the very first time!

Not that we are done with therapist, I wanted again to personally thank all of her amazing therapists that have helped her come so far:

Margaret Bourne (Speech and Oral Motor)
Miki Romo (OT, SPD specialist)
Kate Hemlock (feeding disorders)
Meeta Patel (ABA Feeding Therapist)
Monica (feeding Thereapist, CPMC)
Tom - Easter Seals Play Group
Steve Carrol- Easter Seals Play Group
Rebecca Sharpe - Easter Seals Teach
Jan Tartosky - Child Development - infant CPMC
Susan Stephens- PT

Thank you everyone, enjoy these pictures of you and Kaitlyn together! Your work is sooo important, you have made a life-long change in Katilyn to help her navigate the world ahead of her.

Here is a link to all of her last therapy pictures:
therapy pictures

at play group - easter seals

steve, tom and kaitlyn

tom and steve at music time

steve and kaitlyn

kaitlyn actually sitting still!

kaitlyn loves bouncing on the ball

at the sand table

rebecca - easter seals teacher- last day- this was Kaitlyn's FIRST SMILE EVER on command for the camera

Miki Romo (OT, last day)

Margaret Bourne - last day (speech)

Mom and Kaitlyn at playgroup

serious kaitlyn

holding up the horse for Old Macdonald song

Pictures

Here are some recent pictures:


Did I mention that Quinn started social smiling a week ago? This is SOOO amazing for me, as Kaitlyn NEVER did this! Wow, it brings joy to my heart! He's really a good baby!

The birthday princess, more interested in wearing all her decorations than anything else
snack time at preschool (before her birthday cupcakes)
glamming it up with her new birthday scooter

Grandma Corinne, Grandma Mame, Kaitlyn and Quinn
Trying out her "first" birthday cake for her 3rd birthday
Lisa B, Liz, Whitney and Lucy (friends (and sister) from K's birthday party), which I had thought of taking a picture with all my friends there before everyone left due to the cold.
Kaitlyn and Brendan in the slide

For all the pictures from K's party (way too many to post on blogger) to go my flicker account:

Kaitlyn's 3rd Birthday Pictures

October Update

10.17.08
So much has happened, so little free time!

Let’s see:

Brian's dad visited with us for about 10 days and then a few weeks later Brian's mom came out for another 10 days. Our house is too little to have them come at the same time!

A few weeks ago Kaitlyn got sick (welcome to preschool, always our fear, as Kaitlyn wasn’t allowed to be around other children due to her risk of illness). Not long after she got it she gave it to me and Quinn. I got 2 houses into escrow with work (a good thing, but unfortunately not much of a “maternity leave” for me). Basically things were very crazy and not much fun working, pumping and taking care of a newborn (sleepless nights).

Kaitlyn seemed to have come through the illness fairly easily. (we thought). Quinn on the other hand got very stuffy and couldn’t eat well, and had a fever of 101. After doing a lot of running around for 3 different doctor visits, getting blood draws and urine samples, it was determined that it was just a virus too. His fever went down and cold symptoms went away, but he was crying in pain, so we kept thinking he maybe had an ear infection (he didn’t), Our doctors office was great, but eventually it just went away on it’s own.

Kaitlyn and Quinn both had check-ups this week, and we found out 2 weeks later that Kaitlyn’s had gone into an ear infection (hence explaining why she’s been super cranky the last 2 weeks)! (She’s been on anti-biotics for 10 days now, but I think she still has a fever.)

Back-ing back up again, 2 weeks ago Kaitlyn had 2 developmental evaluations and her first dental appointment. Our NICU has a developmental evaluation follow-up for preemies. Her appointment lasted 4 hours and was mom cranky afterwards!

Here are her test results from a test that was given back in august:
(She was tested at actual age of 33 months, adjusted age of 30 months)
Visual reception - 26 months
Receptive language - 36 months - her strong suit!
Expressive language - 36 months also strong
Fine Motor Skills - 26 months
Gross Motor Skills - 25 months

Her NICU evaluation came back:

She was given a “Bayley” test, which I think is a fairly accurate assessment
Results: (again tested at almost 36 months actual/33mo adjusted)
cognitive age equivalency of 34 months
Receptive Language 34 months
Expressive Language: 37-39 months
Fine Motor: 28 months
Gross Motor 26 months
Other results: “difficulty attending to tasks without moving, increased activity level, sensory hypersensitivity with sensory seeking behaviors, decreased social communication skills and attachment. It is unknown how much Kaitlyn’s visual deficits affect all these areas.”

Then the results from the ridiculous geriatric neurologist (from the NICU follow-up):
1. Hypotonia (meaning: condition of abnormally low muscle tone)
2. Apraxia (meaning: Apraxia of speech, also known as verbal apraxia or dyspraxia, is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). The severity of apraxia of speech can range from mild to severe.)
3. Low Vision
Atypical behavior due to 1, 2 and 3 above

Now I really dislike the neurologist who made the above evaluation, I personally think he is full of shit, excuse the language. But he is as old as molasses, and made his diagnosis in about 2 minutes, while Kaitlyn was tearing apart his office (after a 4 hour test). I disliked him the first time I met him when Kaitlyn was 6 months old, I too then thought he shouldn’t be doing this anymore.

Here were their recommendations:
See a Developmental Pediatrician
OT for sensory processing and motor coordination
continue speech therapy for communication skill and oral motor coordination
recommend PT
recommend special education or regular education with treatment for apraxia and low vision
be re-evaluated again before Kindergarten.

Kaitlyn will be going to the UC Berkeley Low Vision Assessment Program in a few more weeks (which was very difficult to get approved by my insurance, but finally the school district stepped up and is going to pay for it).

School evaluation:

The day before she had her Early Intervention school follow-up in preparation for her IEP. They had to stop testing her at level 5 because she couldn’t sit any longer (not sure exactly what level 5 means) as she was far beyond in many ways. She of course proceeded to trip over the curb (2 times) which showed them how she stumbles, falls all the time. She was hyper, but they were so impressed with how smart she was. In a way it was “disappointing” (isn’t that crazy) as my gut tells me something is up, but she doesn’t always show that side of her when she’s interested in things.

The good news is that she did qualify for special education and as all of her Regional Center therapists recommended. Everyone calls her a “different” case, she doesn’t fit into any of the regular boxes. She didn’t qualify for full-time special day school, just a speech class and a movement (OT class). In her 2nd day of speech class, (which I think is going to be great for her), the teacher commented that she may need more consistent days of school (more than 2 1.5 hr sessions) after seeing her for just 2 days, which validates that she tends to “test” well but that the evaluators didn’t’ really get to see her idysycroncy . The speech school will try to make her look at eyes when she talks, and clearly noticed her lack of abilities in gross and fine motor skills, as well as self-help skills, but commenting to me again that she’s very bright and different than other developmental delay kids.

Eating:

Hmm, hard to explain exactly what is going on. Kaitlyn hadn’t vomited (until today) for probably close to 2 months! She unfortunately, however is loosing weight (which she’s never done before), she hasn’t gained weight since may 08 and is now moving backwards. I let up on forcing her to finish meals (which I think is what lead to the vomiting going away), BUT she’s just not eating very much.

I struggle with this Daily. Part of me so wants her to be a regular toddler that is a “picky” eater. Many toddlers don’t eat much, but then make up for it with a really big meal. The problem is that Kaitlyn never eats that really big meal. She’ll eat a “decent” meal every few days or so, but doesn’t eat enough to make up for the calories that she didn’t’ take in. She really doesn’t like to drink milk. We fortify milk with either cream or Carnation instant breakfast to get more calories in her.

When she does want to eat, it’s quite exciting to watch. In fact, it’s been so long since I posted but Kaitlyn had her very first McDonald Happy Meal about 2 months ago! Wow, isn’t that a funny thing for a parent to be excited about! Only those parents of kids with a feeding disorder can actually understand my joy, and the fact that we took pictures of the “Event!” Now she loves French fries, so ate an entire small bag of them, ate 1 chicken nugget and had about 2 sips of milk.

Kaitlyn had her 3 year check-up last week and I told her doc that I wanted to take out the gtube, the doc asked what our GI doc said (who knows I haven’t spoken to her in ages, as I’m really on my own in this task to get my daughter to eat). I suggested they speak, and they came back saying, no don’t take it out, do a 3 day food diary. Uggh. Haven’t done that yet, have been too busy.

Good news on one front, Kaitlyn HAS gotten taller, in fact she’s 95% height for her adjusted age and 50% height for her actual age. I felt good about that fact and was less worried about her weight, but I guess her BMI is still poor for the height /weight ratio and that’s what has the docs a bit worried. I can’t get any more food in her orally. I’d have to go back to giving her bonus bolus via tube, which I’m really, really fighting. How can we ever be done with the tube is she gets “used” to the tube. I was a skinny girl, maybe she’s just small. This is very frustrating!

We are closer to being a typical toddler, but she still isn’t very good at chewing, still prefers soft foods and can’t eat an apple or raw veggies, no way! Bites have to be very small, as she’ll gag on it, but at least now she often knows the bite is too big and will give it “back” to me, saying too big of bite.

Birthday Bash!

Wow, what a great time we had celebrating Kaitlyn’s 3rd birthday! 70 people came (over 24 kids), If you can believe it, it rained however (well, it did clear up by noon that day) but it was chilly and windy and the few days before (and after) it was in the 80’s. But it ended up being a wonderful party. We held it at the same park where we celebrated her first birthday.

To honor Corinne (before the kids did the piñata) I asked everyone to think for a moment of our beloved Corinne and how much we miss Kaitlyn’s twin sister. I could hardly get it out, I started getting really chocked up and that was that. I had ordered 1 white balloon that I was going to release, but it ended up not making it (I think due to the wind). I really wanted to memorialize Corinne more, but the moment was too emotional for me so it was brief. I think those who know me though knew how important it was.

Kaitlyn had a wonderful time, as you can tell by her pictures. She was in typical fashion very hyper and couldn’t’ sit still for a moment. She loved covering herself in party hats and fiesta beads, the more the better as far as K was concerned.

And the comments I received from those who know what Kaitlyn has been trough when it comes to feeding were so funny. They all loved seeing her stick her fingers in her cake (this was the first she’s ever done this) and eat goldfish crackers off the table. I guess she was an “eating” machine, she was snacking a lot and had a great time!

At her birthday party almost all of Kaitlyn’s grandparents were in attendance, what a treat: Grandma Corinne (my mom) and Grandpa Rich (from Los Angeles), Grandpa Poppy (my dad) and Grandma Mimi (from Los Angeles), and Grandma Mame (Brian’s mom) from Pittsburgh, PA. (Grandpa Gille was just out a few weeks earlier).

We even had a face painting and balloon lady-clown named star that was a big hit. Thank you everyone who attended, it meant the world to me and I know that Kaitlyn loved her party, she still keeps talking about the piñata and the candy, party hats, streamers and balloons.

Quinn

Quinn is doing just fabulously! It’s so nice and amazing to be able to write that. He eats like a champ (From the bottle). I attempt to breast feed a bit, but he really doesn’t like it much and mom gets frustrated (due to the fact that I’m working and don’t really have a lot of free time).

Maternity leave? Not for me sadly! Not long after Quinn came home I became very busy with work (a good thing) and just closed 2 escrows this last week.

I’m still a pumping queen and have already quite a bit of breast milk stored up for the little guy. I really, really hate pumping though, have I said that before. It’s really what’s making my life difficult as of late, as it takes 30 minutes when I pump. I’ve just recently cut out a pump or 2 during the day (and went 8 hours sleeping at night recently too).

Quinn is up to 10 pounds (or just under at his last check-up). He does however have some fluid on one of his testicles that they are closely watching.

He just started social smiling. Kaitlyn NEVER EVER did this! It’s so wonderfully tear-jerking amazing to see. Wow, he’s such a beautiful, good boy and now that he’s smiling and interacting, I’m in love! I got my dream of a healthy, “normal” experience this time around and I’m loving it. It’s not really all that hard. It’s so easy to leave the house with him, I always feel like I’m forgetting things when I leave (syringes, vomit cloths, etc).

Now, he’s still eating every 3 hours (throughout the night too) and I’m extremely tired, but that’ what’s expected of an almost 3 month old newborn so you won’t hear any complaining from me!

On Friday last week I drove to Los Angeles with both kids and my nanny. I had to attend a conference for work, and my mom couldn’t take care of Quinn all night (he’s still up every 3 hours). I never much went anywhere when Kaitlyn was still tube fed and vomiting, as it was just too difficult, with all the supplies and the vomiting. Once I knew I could stop and get a happy meal for her I knew that I could start having a bit more freedom. However, it was hard to drive with a newborn who needs to eat every 3 hours. The drive was very long and once we were in LA hit some horrible traffic, so the drive ended up taking 11 hours! Ugggh!

I then spent 2 days away from the kids at a conference (meaning uninterrupted sleep for 8 hours for 2 nights in a row). Wow, I haven’t slept that long since I was hospitalized back in June.

I got h home last Tuesday night (well Wednesday morning) at 4am! Yes, how stupid am I. I figured driving at night would be easier on Kaitlyn (as she can sleep and I won’t have to stop and do marathon feeding sessions), but I got delayed, (it still takes forever to pack) and didn’t leave LA until 10pm. I was DEAD beat upon returning home and it’s taken me the last few days to recover.

Well, that about get’s you up to speed on everything.

I'll try to work on pictures soon!

October 4th

Kaitlyn is 3 tomorrow (10/4), haven't had time for a blog update. We all were sick the last week, even Quinn, but everyone's on the mend now.

Today we had our IEP with our school district, and I almost cried. Almost cried due to the fact that I had to be there discussing my daughters special needs at all and almost cried because I miss her sister and want her there too. How my life is sooo different than I had planned.

We have 70 people coming to celebrate her birthday, why does it continue to make me feel sad instead of celebrating?? It's also supposed to rain (it NEVER rains in October, especially this early, espcially knowing that it's been 80 degrees all week, and is supposed to become nice again sunday)

I want to do something to honor Corinne, not sure yet what I'll do, but it's important to ME, even if it makes others uncomfortable.