Here is my speach to givec up on stage before the San Francisco March For Babies Walk starts, what do you think?
Our family has experienced prematurity first hand -
Here’s our story and how the march of dimes saved one of our daughter’s lives…
After years of infertility my husband Brian and I were so excited upon hearing we were finally pregnant with twins. I planned to do everything “right” for a healthy pregnancy, but sadly events out of our control changed the course of our lives forever. Due to my age, it was recommended that I have an Amniocenteses, which unfortunately caused my water to break on one of my twin girls when I was just 17 weeks pregnant.
I was told that I would likely go into labor in the next 48 hours and that it was very unlikely that I would carry my twins to term. I defied all-odds and after 10 weeks of strict-bed rest, incredible stress and worry and lots of doctor visits, delivered my twin daughters 4 months early - as I was only 26 weeks pregnant.
Most parents look to the birth of their children with joy and anticipation. I will forever remember the early hours of October 4 2005 as one of the most stressful and anxious days of my life. This was not a joyous event, I kept repeating over and over to my nurse that it was way too soon and I wasn’t ready, the girls weren’t ready. I couldn’t believe this was happening.
Corinne Margaret, named after our mothers, was born first. Corinne thrived and grew inside me for 10 weeks without any amniotic fluid. She weighed 1 pound 11 ounces. Her sister Kaitlyn Elizabeth was born a few minutes later weighing even less at 1 pound 10 ounces. There were no newborn cries, our daughters were whisked away by the team of doctors to try to save their lives.
They were both given surfactant to help their extremely premature lungs, (a life-saving treatment made possible by the March of Dimes,)
Sadly, our first born daughter’s lungs never developed enough without amniotic fluid and she passed away in my arms 3 hours after she was born. Our surviving twin daughter, spent 4 long months in the NeoNatal Intensive Care Unit NICU. She was one sick little girl. She needed heart surgery to close a hole in her heart (from being born so early), This surgery saved her life, but permanently paralyzed her left vocal chord, so to this day Kaitlyn talks with a whisper. Kaitlyn had countless blood transfusions, courses of steroids, antibiotics, eye surgery and many times we thought we’d lose her too.
She eventually came home to us 4 long months after she was born. She came home with a feeding tube, as she had never gotten the hang of feeding from a bottle. 100% of her nutrition was given to her through her feeding tube as her feeding and vomiting issues continued upon homecoming and we only just removed her feeding at the age 3. The first year of her life out side of the hospital included well over 260 doctor and therapy appointments. Can you imagine?
Kaitlyn is doing remarkably now at, but does still have issues related to her extreme prematurity.
Our family was blessed with another pregnancy and as luck would have it I again had pregnancy complications: (Placentia Previa, which means that my sons placenta was too low in my uterus and meant that I it was extremely likely that I would deliver early. Our son Quinn was born just 1/ ½ years ago; ONLY 6 weeks early, and he spent a SHORT 3 weeks in the NICU, but is basically a healthy little guy.
Our family is proud to serve as ambassadors for the March of Dimes March for Babies. Through their continued funding of research that finds new options and solutions for premature babies, the March of Dimes makes it possible for babies such as Kaitlyn and Quinn to not only survive but thrive. Our family looks forward to finding more opportunities to support the March of Dimes in the years ahead.
Thank you for supporting the March of Dimes. Brian and I realize it takes many volunteers raising much needed funds to make all this happen. That is why we participate in March for Babies.
I’d like you to meet my Miracle little girl, Kaitlyn.
Kaitlyn come on up here.
In closing, as my role as the Chair of the Family Teams, I’ve heard so many heart breaking stories of loss and prematurity and I just had to introduce yourself to one family. Molly Mallon was born full term, but sadly passed away in her sleep when she was only 5 months old from a rare infection just a few short months ago. Her parents Liz and James are here today and their team Molly bugs has raised over $15,000.
They have 45 team members participating in March For Babies walks all over the country and even have team members walking in other countries today in honor of Molly. I wanted to share their story, as they are one of the top fund Family Teams in the entire state of California.
Team Mollybugs, please wave and say hello!
Please know that by your walking and participating today, we can all help save families like my own and Mollys from knowing the terrible heart ache of loosing babies much too soon.
PS, if you haven't seen my MOD video I made last year, here it is:
March of Dimes San Francisco Ambassador Family 2009 from lizmccarthy on Vimeo.
If you would like to donate to our team, here is the link:
Friday, April 23, 2010
Sunday, April 11, 2010
As I lie in bed last night I thought of all the reasons I don’t seem to blog any more, and can’t decide if it’s a bit of depression or just plain not wanting to do something, as there is just too much on my to do list. I think it’s the later, but who knows.
I think of how often I blogged about Kaitlyn’s progress of growing into a toddler and I’m not documenting much about Quinn. I’m sad about that, but maybe that’s sort of the problem, Quinn really isn’t a very easy baby. I think I’ve lamented about that in the past. But needless to say, he’s really really trying on ones nerves. Everyone says that he must be easier than Kaitlyn was, and to be honest, I can honestly say that with Kaitlyn obviously, things were really hard, but it was easier to “deal” with because it was the card that she was dealt or something like that. With Quinn, it’s more of a personality thing. His crying is horrible. Thankfully he is getting better and he does have more and more time when he’s an absolute joy, but I live on pins and needles and dread the inevitable time that most often comes, the complete melt-down. Kaitlyn never really cried. Her demeanor was always really calm even in the midst of complete chaos. Anything can set Quinn off.
Here’s an example, Kaitlyn has always been a really sound sleeper. I think her time in the NICU did that to her, that she learned to sleep through anything. I can walk in, check on her, tuck her in, even turn the light on and read next to her (if she’s sleeping in bed with me) and nothing bothers her. Now on the other hand I DREAD going to check in on Quinn when he’s asleep. If the bedroom door so much as squeaks or something makes any noise, even the hall way light, he’ll wake up and often times start crying. I always want to check in on both my children before I go to sleep, but there are more and more times when I realized I’ve gotten into bed and hadn’t checked in on Quinn and leave it at that. It’s always like I’m on pins and needles around him, hoping that it will be a good day, a good bath time, a good anytime. If we take him somewhere, hoping that he’ll not have a melt-down.
Some days he cries for 2 hours straight, by the time I get him into bed (and hope and pray he’ll go to sleep) I’m so worked over that the last thing I want to do is blog, get on my computer, clean the house, do my taxes, do my real estate newsletter, edit my story to work on getting it published, or basically any of the mirad things that are on my plate. I just am so exhausted and worn out and feel horrible guilty of how much I HATE it. HATE IT.
I think that likely is the main reason that I don’t blog much any more…Sorry readers, hope you understand.
Well with that off my chest, here are some updates:
Both kids were sick last week, which added to the stress. It seems they always get sick Friday night, so I have to take them to San Francisco (as that’s the after hours clinic) which is a 20 mile round trip (it’s basically adjacent to the NICU, so I know that round-trip well). But it takes all day on Saturday. I can’t believe how many times I’ve been to the clinic this winter. I took both kids. Quinn had a bi-literal ear infection (guess that’s why his screaming/demeaner were especially trying) and Kaitlyn’s lungs were really being affected by the crud they both had. When they checked her lungs (sounded very blocked) and her stats, she was only saturating at about 94%, which worried the docs and me too. After another breathing treatment at the clinic (we’ve been giving her inhaled steroids and abulterail every 4 hours for about a week) she did improve. But the docs gave us oral steroids (which I hate using) but the chance of this going into pneumonia are too worrisome. Later in the week (after the steroids should have kicked in), her cheeks were bright red, she coughed all night long, and she just wasn’t’ acting like herself, so back to the doctor we went. Her lungs sounded better (It was right after a treatment) but they wanted us to get a chest x-ray if her cough didn’t’ improve, thankfully, that night things did improve. But the following day she had a horrible coughing fit like I’ve never heard and called her pediatrician on her cell phone (which I never do). Thankfully it subsided, but I was really worried for a while.
Eating: Kaitlyn (when she’s not sick) eats like a normal kid, albeit a bit picky at times, but we don’t’ make a big deal of it and eventually she eats the “offending” food if we continue to offer it to her. She wasn’t into carrots at all, but now she gobbles them down. Kaitlyn has sweet tooth like her mom and LOVES ice cream. I’m trying not to get into the thing of finishing all her food to get a treat, but it’s hard not to, as she really does need the calories.
I have to say I still watch her eat with pure pleasure. It never ceases to amaze me to watch her eat. I think I’ll spent my whole life watching her in amazement, as I never thought we’d get to where we are now. Sometimes Kaitlyn still gags and I’m sure that it will end up in a vomit, but she swallows it down, gallantly, (making a lot of chocking/gagging noises) and we don’t make a big deal of it, but offer her water and ask her if she’s ok, she chokes out: “I’m ok”, which is so endearing and touching, knowing that in the past that episode would have emptied her stomach. She’s come a LONG ways!
She is still only 32 pounds, but getting taller all the time. She wears a size 3 or 4 pant around her waist but size 3 and some size 4 pants are too short for her. I love the Levis as they have adjustable waist bands that seem to work really well.
She’s in her special ed class 2 days a week and really enjoys it. It’s a small class where they work on communication/pragmatic speech, like looking at one another when they talk. She’s still in her 3-year old preschool class 3 days a week and enjoys that too. She doesn’t have any “friends” per-se, but all the kids seem to be drawn to Kaitlyn. Their moms and the teachers tell me that kids always want to do what Kaitlyn does and try to engage with her. I think because she is so focused on whatever it is that she’s doing and her voice is so soft, others are drawn to her.
Kaitlyn definitely has SPD (Sensory Processing Disorder). There are times when she just rolls around on everything, she can’t stand still, she picks at her skin and nails and more, has to always be holding something (which often times she doesn’t’ realize she’s holding something) and to me seems “different” than other kids her age. We are likely going to go back to seeing an OT again. I do think that her work with the Svetlanta Mustgatova method (Boutaina Rosen www.BodyAcumen.com has really helped her. There are times when we are out that it’s very hard to keep Kaitlyn under “control”, by that I mean that she really is very hyperactive and can be all over the place. When she’s in that mood, she cannot/doesn’t listen, and it can be very trying on my patience.
We went to the snow 2 weeks ago and although it was a crazy trip up and back in 24 hours, while I had to juggle a lot of work stuff and screaming Quinn. But the trip was worth it once we took Kaitlyn up the Squaw Valley Cable Car…she loved the ride up , even though it was storming badly, we decided to go ice-skating at the Olympic Village. It was so windy on top that K’s glasses fell off and slid all the way across the ice. Kaitlyn was very tentative (like anyone would be) upon first putting on ice skates, and held on to me with dear life (not sure how safe I was as it had been a long time since I’d been on skates). But after a while, I found this walker-type thing, that I held onto Kaitlyn as she was “walking” along the ice, then lo and behold, I was able to let go. It was sooo amazing. She did incredibly well. She fell down, got back up and kept at it. My heart just leapt out of my chest. She was such a trooper. Keep in mind it was miserably cold and windy and snowy and she just kept at it! At one point she told me, “I’m not very good at ice skating, I didn’t’ win a medal.” I couldn’t’ figure out what she talking about until I remembered that we had watched ice skating on the Olympics earlier in the winter. I told her that it takes a lot of practice to do new things and that she was just doing so well and that I was so proud of her for trying so hard.
Later on that day she went sledding with the same abandon (the last time we were in the snow the year before she was terrified of sledding), so I guess it’s just age. Dad too was really proud of his little girl.
Can you believe that my daughter, the former 1.5 pound micro preemie was out on ice skates with no fear?
I have to say, that my daughter is one incredible little girl. She’s willing to try so many things. (Keep in mind that sometimes she gets FREAKED out by trying something things, like going in to a jumpy house) but generally she is amazing if you consider that she’s so gung-ho to try different sports so readily. It makes my heart just leap out my chest with happiness.
People say things like, “wow, she speaks with such a grown-up demeaner, complete sentences very well spoken” especially as everything is in her quiet voice.”
Just a cute observance: for some reason, Kaitlyn has been saying the word “yey-ah” pronounced with 2 syllables and a bit of a “slang” to it. She also says “spooun”, (spoon) with a funny pronunciation too, that is too cute. Also, when she’s really excited about something she sucks in her breath with an audible “aaah” of sorts, it’s sooo cute! Sometimes she even covers her mouth with her hands, as when she hears the ice cream truck!
Quinn is still one little tiny guy. He just can’t seem to get over the 19 pound mark. He’s been 19.5 pounds for at least 6 months. He’s not the best eater (I’d call him VERY picky) and every time he gets sick or is teething he doesn’t like to eat much of anything. He has a sweet tooth also and prefers fruit and cookies. He does like proteins and rice, he likes yogurt, but hates all breads and pasta. He likes to be in charge and to feed himself, which isn’t easy as he’s not all the proficient at spoon feeding himself yogurt or hot cereal. He lets it be known when he doesn’t’ like what he’s been given, but sometimes I’m at a loss as to what to feed him. Sometimes he’ll love broccoli and carrots, or bananas, and the next day he can’t stand it. Very frustrating. And due to his “letting you know he’s displeased” it can lead to very stressful times. I hate feeding him. Just as I hated to feed Kaitlyn. I guess somewhere in the back of my head I hope and pray (from experience) that this will pass, as look where Kaitlyn has come from in the eating department.
As he’s not gaining weight I’ve started adding whipping cream to his milk, it’s bringing back memories of trying to fatten up Kaitlyn.
Quinn is talking up a storm, he’s got well over 40 words and has just started some 2 word sentences, but very babyish in talk. This is new to me, as it seems once Kaitlyn started talking it was in perfectly pronounced words, never talking baby talk. Quinn’s word for milk was mi-mi, but it is milk now. Other words: more, down, mama, dada, apple, nananana (banana), go outside, go play. Quinn really likes to be outside (creating havoc, throwing rocks, sweeping the ground) and if you take away what he has or is doing, he has a little tantrum, screams and arches, trying to get his way.
Quinn loves to torment his sister, he takes her glasses and loves to follower her around the house. He imitates her all the time, and she usually just ignores him, but lately has started to interact a bit. Today she even spontaneously kissed him on the head. That’s very out of the ordinary for Kaitlyn, but Mom loved to see it! She is quite good with him actually, as when he steals her toys and such, she’s fairly calm. She’s even helped me a few times to get his milk or to try to make sure the toilet is closed as Quinn loves fishing in it.
Quinn loves to laugh and giggle and smiles all the time (when he’s not screaming that is). If you didn’t know him, and just met him on a happy day, you’d think he was the happiest baby ever…I wish! At least he’s happy more and more often now.
Yesterday I had a play date with a few other moms in a group that I started for moms who have lost a twin. We’ve met for dinner a few times and this was our first time meeting each other’s children. In the morning before we left I told Kaitlyn we were going to be playing with some children who were twins like Kaitlyn was. On the way over in the car Kaitlyn asked me if Corinne was happy and if she could fly (being an angel and all). Then later in the day she asked me why she died (I said she was sick) and she asked me if I was sad (I said I was). This morning she drew all sorts of pictures of her “people” and quite a few of them had glasses and angel wings. The weird thing is that we have this crazy light in our bedroom that seems to come on for no reason all by itself. I’ve been telling Brian that I think its Corinne turning it on, just to let us know that she’s there. Tonight it went on when I was reading Kaitlyn a book, then the fan went turned on also. I liked to think of Corinne letting us know that she’s there, enjoying our book reading time together.
Oh how I miss Corinne. Some days it’s still so hard. I watched a stupid episode of “Private Practice” that’s been a hot topic in my Micro Preemie Support Group, and had been dreading watching it. I finally watched it last night and was fairly ok through most of the episode (as my online friends had told me a lot about it and the medical inaccuracies), but when the mother was handed the baby, then the baby was disconnected from the vent and more, I sobbed so loudly out-loud in grief, I was shocked. I’m always amazed that the emotion and grief is there. I guess it will always be there. Easier, but there.
Well, again sorry for the long delay, at least I hope the long post was worth it if you are still following me!
Posted by liz.mccarthy at 4/11/2010 11:01:00 PM