Sunday, December 12, 2010
Hi Everyone, I’m so sorry for having been so absent the last year, where has the time gone…I had way too much on my plate.
But a number of things have made me realize how much I miss the support from all of you, and would love to try to plan a dinner date for after the holidays.
1. I know how hard the holidays are for everyone..I know how sad I feel and wanted to reach out to all of you in support.
2. Kaitlyn turned 5 year this and I absolutely LOST it at her birthday party, much worse than for her prior birthdays…I had to leave the room as I was sobbing.
3. I took her to the Nutcracker last night and lost it there too…Kaitlyn watched enthralled, sittinng on my lap as tears were streaming down my face for the first 30 minutes of the ballet – will this ever stop…tears for being so happy that Kaitlyn and I were at the nutcracker, tears that I'm a mother, tears for the fact that Kaitlyn was still with me after all she's been through, tears for missing her sister, tears for oh I don’t know, I couldn’t stop them…
4. Today was the annual candle lighting world wide ceremony at 7pm…for the compassionate friends Network..where you are to light a candle in memory of children who have passed too soon.
5. Not sure if you heard on the news, but a few days ago an 18 month old twin fell into a fountain in SF, and I just heard the twin passed away. I'm just heart broken for this family, as I know a bit of what their future will feel like....
My love, thoughts, compassion and prayers go out to all of your during the holiday season..
...and to all of my blog readers who have been through loss or hardship during this holiday season...
Friday, December 10, 2010
Friday, December 03, 2010
Here is a story about a tube fed little boy and the Graz feeding clinic in Austria (where friends of mine have actually gone).
Saturday, November 20, 2010
How small is that? he is a whopping 1% on the growth charts, that's less than Kaitlyn was at this age. Here is a chart if you want to check your child's weight.
Kaitlyn, who is actually eating like a champ, is 5 years old and is only 32 pounds....
So I try not to worry about either of them, but Quinn REALLY doesn't eat much at all.
I'm considering maybe trying reflux meds again...
Thursday, November 11, 2010
Here is a recap:
Trip #1: Michigan for Cousin Jens' wedding:
Starting with my cousin Jen's wedding on September 18th in Traverse City, Michigan, I've been on the go for about 7weeks.
All of my cousins on my mother's side - I'm the eldest, (but certainly not the tallest). RtoL: Brother Gary, Chris, me, Kathy, Jen and Christina
I went on this trip solo, as it was going to be too much money to take the kids to the wedding and hard to manage young children at a wedding. We already had that experience earlier in the year (May) for my step-brothers wedding in New Jersey.
Then for the 2 weeks I was home I got a luxury home into contract that ended up being extremely stressful and I lost a lot of sleep over it. It took up every minute while I was home (and away too).
Trip #2: Kaitlyn's birthday party and Los Angeles for WCR CA State.
Planned and celebrated Kaitlyn's Birthday party on October 2nd, then flew that afternoon to Los Angeles (Anaheim), where I attended the WCR State of CA meeting (I'm the 2010 President of the Marin Women's Council of Realtors).
Trip #3: Brother Gary's wedding
Returned and then left the following week for my Brothers wedding, which was a whirlwind 5 days, with all the family events. Kaitlyn was the flower girls and I was my brothers best "woman".
Trip #4: Atlanta Georgia for Preemie Parent Summit
Home for a few days, then left for Atlanta Georgia. I was honored to be invited to attend (at no cost to me) the first annual National Association of Preemie Parent Summit. The attendees (all preemie parents) have all started non-profits or are influential in the supporting preemie parents. I was invited primarily due to the Micro Preemie support group I started (the link can be found here: http://www.micropreemies.com/ Which now has over 700 members, but also because I run a local SF Bay Area Preemie support group, a twinless twins support group, a feeding therapy support group and am very involved with March of Dimes (ambassador family for the last 2 years, Bay Area Family Teams Chair, and now the CA state family teams chair).
It was a wonderful summit, I had intended to write more and do a summary, but as luck had it, I had to leave the following week again and just didn't have the time.
Trip #5: Halloween Party, Giants Win and New Orleans for National WCR and NAR
We hosted a progressive Halloween street party (we have 5 good family friends on our street that all have children the same ages as ours) at our house, then the Giants won the world series the following day (11/1). I left early the next morning on Tuesday and headed to New Orleans for almost a week. I went one day early to see my wonderful friends (ex-aunt & uncle in-laws) then spent the rest of the time in conference rooms and sessions for the National Women's Council of Realtors conference and the National Association of Realtors conference. As President of my chapter, I had to vote in elections and came away with a lot of great new tech tips.
A Blackberry self-portrait -Liz, Judy LeMarr and Sylvie Zolezzi (Marin Chapter of Realtors) out listening to Jazz in New Orleans!
I'm preparing now to do a presentation next week for our local chapter, am preparing for my last board meeting as president tomorrow.
I seem to have misplaced my camera in all of these trips, so hopefully I can find it to post a few pictures I took.
I'm hoping you'll understand why I haven't been blogging.
I literally don't know how I've stayed afloat the last few months...But finally feel now that I get to "relax" over the holidays! Funny how that sounds!
Well with all that said and done, I've just found out that I was nominated for an Influential Mom contest. I"m in the top 10 and in the running to win an iPad!
Please vote for me, here is the link: Voting is open until 11/17!
Sunday, October 31, 2010
I was the "Best Woman" for the wedding and Kaitlyn was the flower girl!
As the Official "Best Woman" giving my speach to the happy couple!
I stupidly put the lighter in my pocket as I was carrying out the cake to Kaitlyn during her Happy Birthday song, and promptly the cake slid right off the tray and crashed on the ground. It was horrible, probably didn't help that I was tearing up anyways as I was singing, feeling very emotional for my girls 5th birthday - even more than in the past few years. I don't know why, maybe 5 is a anniversary type number or something...I was really missing Corinne and all that - I wish Corinne had lived one more day so that the 4th wasn't both the girls birthday and Corinne's day of passing.
Later I was able to laugh about the cake, but still was emotionally about the whole birthday thing. I think some attendees thought I was overly upset about the cake sliding...I was bummed, but mainly because I had Corinne's name on the corner of the cake, and I wanted to say something about both of them after the song was sung...I think that's what I was sad over.. I hope that someday birthdays will be easier and less emotional for me. That day wasn't a good day...October 4th...sigh.
Well, here is the cake slide on video! You don't see it in the video, but afterwards I promptly went in the house and sobbed.
Well, life has been an extra whirlwind lately, I've gone on 4 trips (1 more to come): My cousin married in Michigan (my home state), I attended a WCR real estate conference in Anaheim (I left on the day of Kaitlyn's birthday party), My brother got married in Camarillo, CA, I was invited to attend a Parent Preemie Summit in Atlanta, and I leave next Tuesday for another real estate conference - in New Orleans (my last official trip as President of Marin Women Council of Realtors). Phew. I've also been very busy with work, Kaitlyn has been sick for 3 weeks straight, she got better, then both she and her brother just got sick again in time for Halloween. Wow, it's been crazy!
Happy Halloween to everyone!
Wednesday, September 29, 2010
Last night I watched the video I made 2 years ago for Kaitlyn and Corinne for the March of Dimes. I don't watch it often, or look at Kaitlyn's baby pictures as often I as I used to, but this time I watched it, although I teared up, I was able to look at Kaitlyn then and compare her to all of her wonderfulness now. In a way it was hard for me to believe that she was actually that small, that tiny, that sick....
Later that night, as I lay in bed next to Kaitlyn I was filled with joy as I thought of all the wonderful things my daughter has accomplished so far in her short life and how incredible proud I was of her and how much I wanted to wake her up and tell her that I was honored to be her mother.
Then it hit me, I missed Corinne. I had so recently in the evening saw pictures of my Corinne and my heart and arms were empty for my one daughter while at the same time feeling such joy at my other daughter. I gasped out in horrible sorrow, wanting more. Wanting to have had a normal twin experience. Wanting both my full term healthy twins to be with me in bed...Will this raw emotion feeling ever go away....
October 4th. Kaitlyn is soooo excited about her birthday party this Saturday. She counts down the days every morning when we wake up. She is just the joy of my life.
For this years birthday cake I asked them to write Corinne's name in the corner of the cake along with Kaitlyn's big name. I need her to be honored on the day that she was born and that she passed away.
So many moms think of joy and the memories of the birth of their first child on their birthdays...October 4th is still a day that isn't joyous for me
Wednesday, September 08, 2010
I always ask her about her dreams and she can come up with the most amazing, things. Most of the time I think she has no idea what was in her dreams and just comes up with something imaginative. I just loved thinking about what a crazy dream scuba divers, hospitals and chickens. My daughter certainly has a wonderful imagination!
Today was Kaitlyn's first day of Preschool (for the 3rd time). The class that she is in now is a different class (for 4 year olds, even though Kaitlyn is turning 5 in a month). She was a bit nervous in the bigger class, but settled right in when she saw all of her friends. She really is one amazing tough little girl that isn't afraid of much.
Her special ed class started last week, and she is doing that 2 days a week, and preschool 4 days a week (Thursday's overlap and are going to be a bit long for her, we'll see how she does).
Kaitlyn is getting very excited this year for her birthday, but (lucky for mom) doesn't care much about what her party is all about, just that it has birthday cake, candle (with a number 5 on it), balloons and a bounce house! (no princess themed parties for my little one!).
I was thinking yesterday of this time back in 2005. As my water broke on July 26th 2005 (how I'll never forget that life changing date) and I was still on bed rest now in September...months later...wow crazy to think about.
I found today a book where I noted what Kaitlyn weighed every day (I know that sounds neurotic, but I was looking at the overall average) when she was still tube fed. I discovered today that at age 2 Kaitlyn weighed 23 pounds and Quinn only weighs 21 pounds! I knew he was a little guy. He is such a picky eater. Trying to find foods that he likes while at the same time trying to not "bend" to make him more of a picky eater as he REALLY does need to gain some weight. Quinn hates pasta and bread! What kid hates mac and cheese?
I guess I look at my brother and I. We were skinny. Really skinny. I wore size 0 for many years as a teenager. I remember my mom making me drink protein shakes to try to gain weight. My brother is still really skinny (being a world class Marathon runner and all - he was 7th in the US a few years ago for the Olympic Trials). So all in all, I'm going to have skinny kids. Not a bad thing right? I'm trying not to stress over it and just try to feed them healthy food (wish I was a bit better at that due to lack of time), at least they both like broccoli and carrots!
We went to the beach on Labor Day in West Marin. It was sooo beautiful and the weather was perfect. It was nice to take time off with the family. The beach is about 45 minutes from our house out windy roads. We went to a beach called Drakes Beach, which is where Sir Francis Drake landed many years ago. Lots of history there. Kaitlyn (my daughter who has very few fears) was terrified of the waves. She hates the sound of it and it terrifies her (even though ironically she sleeps to a sound machine with ocean sounds). Such a clear example of her Sensory Issues. She can fall down and be bleeding and you'll hardly hear a peep out of her, but she won't venture anywhere near the waves without having a severe breakdown of anxiety.
I stupidly didn't take a single picture, we were having too much fun! But here are a few other recent pictures:
Kaitlyn after she saw her friends and wasn't nervous any more
Kaitlyn a little nervous after first arriving (playing with fireman toys!)
Before School...Look how big I'm getting! (Kaitlyn tells me every day that she's bigger! I really think she's going through a growth spurt as she's eating a LOT and even when I look at her she seems taller to me.)
Thursday, August 26, 2010
Here are some other recent pictures:
We just returned from a wonderful 5 day camping trip in the Sierras at Gold Lake. You have to 4wheel drive into this lake, but it was the first time I felt I was at a serene, private, back-packing like lake since I had children. It was soo amazingly beautiful. But camping with 2 young children isn't the easiest thing to do, but it was 100% worth it! Thanks for "dragging" me out kicking and screaming about taking care of 2 kids with no running water or bathrooms, Brian - I loved every minute of it and would do it again in a heartbeat! :)
The kids at a recent local air show. I knew they would be so excited, because every time a plane flies overhead they both go crazy!
And trying out a Navy helmet.
Quinn REALLY loving to imitate his dad mowing the lawn! Too cute!
Quinn's 2nd haircut! He did great and got a "big-boy" haircut, which was sort of sad for mom.
So beautiful and peaceful!
Don't think I have the "nerves" for 4-wheeling some of the terrain we went on!
Sunday, August 15, 2010
Kaitlyn is going to camp this summer and I can't tell you how many time's I've just watched in sweet awe as I dropped her off at camp feeling how lucky I am to live within walking distance to this wonderful camp and community and how lucky I felt to be a mom.
On Friday they had an all camp Talent Show. Each of the age groups did a little number. I was able to go and watch (yeah, a break from work) and as soon as I sat down in the back of the room, I started tearing up. Then I really broke down and the poor mom next to me asked if I was ok.
The emotions sometimes of everything are right there under the surface. I'm always so surprised by it. This time I just felt joyous for being a mom and for being able to experience this. I was brought back to wanting a child so badly after years of trying and not having any luck (for what ever reason). Then of course the emotion was for how elated I was that Kaitlyn was here, experiencing this camp and how much love I felt for her.
And then lastly, it was sadness, for feeling the loss that her sister should be here experiencing it at the same time.
I literally almost cried through the whole "bumble bee" song (Kaitlyn is in the Bumble bee camp for 4 year olds) and as they acted out being lions from the Lion King. It was soo cute!
Anyway, maybe I am lame, but I think I'm just a mom and so eternally grateful to be a mom that has been able to experience so much through the miracle of my little wonderful amazing daughter (and son!).
Tuesday, August 10, 2010
Kaitlyn drawing up a storm
Dad and Kaitlyn eating ice cream on the "Shore" in Ocean City NJ.
Kaitlyn throwing down tacos (she ate the entire one she's holding the other one on the plate and another 1/2!) No kidding! I was so amazed I had to take pictures, others thought I was crazy for being so amazed my child was eating. This was at our neighbors "tack truck" birthday party.
Basically life is good, busy and time is just flying by, where has the summer gone??
Well, Here are a few updates.
Quinn turned 2 a few weeks ago. He was a whopping 21.5 pounds (which was 1% of the charts). The little guy is still very small! He is a picky eater and let's you know when he doesn't want to eat something that you've given him.
I have to say that our recent work with Boutaina Rosen (Svetlana Masgatova Method) worked. For the first time since he was born, Quinn is honestly a really happy little guy. After almost 19 months of crying 80% of the time, I'd say he now cries only 20% of the time (like tonight). He has gotten so much easier to be around. My heart now sings so much more for my cute little guy. It's amazing how much a screaming child can get to your soul and when they honestly are happy and giggly how much my love for him has grown.
His language and words have taken off the last few weeks too. It's so fun to see him make full sentences and trying to get across what he wants rather than screaming about it. Here are some examples" "I don't want that." "What are you doing?" Where is Kaitlyn?" "Where did Daddy go?" "I want a balloon".
He takes his chewable vitamins so easily, he can drink out of cup (with help), he can't seem to get the "tipping" of bottle or sippy cups very easily, he'll complain that his water bottle (with a sports top) is "empty" when it's not just because he doesn't tilt it to drink.
He loves babies and his sister. He loves to torment Kaitlyn. He'll steal her glasses or kick her on the couch and get an "evil" glance in his eye when he does something to bug his sister. He also loves to "help" mom but tearing things apart, but also is quite good at really helping to put things back together.
He is completely addicted to his "ba-ba" his pacifier (which is still a newborn baby style) that is ruining his baby teeth in front. IT is giving him a horrible gab in his front teeth, at least he is weaned to only use it at night (or on long road trips). I've tried to get him to use an orthodontic type, but no way is that going to happen.
He loves to giggle and laugh and has the sweetest giggle you'll ever hear. Everyone comments how blond and cute he is. he LOVES to snuggle with me before going to bed at night, once he has his blanket and ba-ba, he snuggles in close and makes little sing-song voices. I never go that with Kaitlyn and I cherish it every night. Even tonight (after an hour of screaming) when I held him in my arms and he quieted down because he had his ba-ba, my heart just melts with love.
Kaitlyn will be 5 in October.
At her IEP earlier this summer I went in prepared to fight, as the school district had told me that once she turns 5, her special education classes would need to be continued in Kindergarten. I told them in no uncertain terms that Kaitlyn would NOT be going to Kindergarten in the fall even thought she will technically be 5 on October 4th. Gestationally she wouldn't be 5 until January 4th. and All other children who are 4 in January won't be in Kindergarten this year. I had print out of neurological issues that Micro Preemies have and more, and low and behold,t he school district actually agreed with me, that Kaitlyn wasn't ready and they agreed to continue giving her special education courses!
I was so ecstatic. Maybe some of my readers think it's strange that I "want" this special ed for her. If I were the quiet type and just let thing be she'd be just mainstreamed. When people first meet her they think she's so amazing and articulate (which she is), but it's hard to see the "flip" side of Kaitlyn at first glance.
I'm so happy our School District sees it and agreed that she's not ready for K this upcoming year.
Kaitlyn is obsessed with picking things up off the grounrd and always have to have some randong thing in her hands at all times. She also picks incesentantly her nails, arms and more. She is always covered with scrathes and bruises from falling all the time.
What is her "flip" side? It's like a switch goes of in her head and she goes a bit hay-wire and gets out of her mind (that seems to be the best way to explain it). It's really exasperating to try to parent her when she's out of her mind. It's like she has full blown ADHD, and cant' control her actions. She throws, she rolls her self on the ground, she bounces off the walls, She trips, falls with out looking where she's going.
She clearly has SPD (Sensory Processing Disorder). When she's like this it is absolutely exhausting to parent her. If I'm in public (which is usually when it happens, I get embarrassed as I feel like a horrible parent as I can't control her), I start sweating and yelling, and it seems that Quinn's crying often sets her off, so when he's screaming, she starts to loose it and I loose it too.
Then all of a sudden she'll sit down at a table and draw (for HOURS at a time) and be as calm as a bird that I don't even know she's in the room. I've posted some of her drawings. I have LOADS of drawings like his. Most of them all have stories behind them, like a "Gymnastic Show" everyone happy doing handstands on a wire; a Hospital (the hospital picture has folks with bandages on their heads and ambulances and sad/crying faces), a circus, a scary story with lightning (every one was sad and crying), and more. I love asking her what she's drawn and hearing her detailed explanations.
Kaitlyn is VERY verbal and articulate and can say the most amazing, intelligent things that always keeps me on my toes. Sometimes when she's "in mind" she is so amazing to talk to and she can be very perceptive. She clearly shows how much she pays attention to things. She always says please and thank you (well most of the time) and others comment how polite she is. Her sweet quiet voice is still very quiet, but it draws everyone to her. Strangers always comment on how sweet she is (they aren't seeing her when she's in her "mood, although it's not really a mood.
She tends to hold going the bathroom all the time and I think it's part of her sensory thing. When she really needs to go it adds to her getting in a crazy mode, so that' doesn't help things at all.
Eating: Well, Kaitlyn no longer has any feeding issues WHAT-SO-EVER! It's hard to believe that I can type that. It's true. Yes she's small, but she loves to eat most types of foods and is always willing to try new foods. If she doesn't like something, I don't make a big deal out of it and she'll typically try it again another time.
Sometimes she still "gags" and coughs. Normally she just swallows it down. Others when they hear her, say things like, OMG, is she ok? I don't even respond and hardly realize she's doing it. Funny how things change. Sometimes Brian and I look over at each other and stifle a giggle, as she sounds like an old man clearing her throat some times and we think with a glance to each other of how far she's come.
When we were in Tahoe she actually vomited a few times (wow Did I forget how much I hate cleaning up vomit)? Poor thing, this was the first vomits she's done in years and she clearly didn't like it. She can't really pronounce a "V" very well, so she'd say, Mommmy, I don't like Womit" I was able to give her a "keg cup" like we used to catch her vomit in but this time she could do it on purpose in the cup. If figured it was the high-altitude. I had a few more upon coming home, but that was it. Maybe she had a bug or something.
We travelled to New Jersey in May to attend Brad and Erin's wedding. The trip on the plane went amazingly ok (as compared to trips in the past). It was a very quick trip but we had a lovely time. We had the wonderful experience of meeting a fellow Micro Preemie mom (Hi Jennifer) that wonderfully baby sat for the kids so we could go to the adult wedding. Amazing how I've gotten to meet other moms from across the world and we instantly can "bond" over the shared experience of what we've gone through. As her daughter is about Kaitlyn's age, it was fun to see them interact, with their glasses on and their similiar SPD issues.
We've been camping 1 time so far this summer with our Neighbors (have I mentioned how much I love our street as so many of us have children the same ages). We went to Lake Tahoe for the 4th of July and had a wonderful time, (remembering that we used to always go to Tahoe for the 4th pre kids).
We had a huge party at our house for Quinn's 2nd birthday and Brian's 37th birthday. We have been working on our back yard and it is sooo nice to have grass and a place to entertain as our tiny house is just too small.
We have 2 more wedding this year (3 weddings this year and another I can't go to). My cousin is getting married in my homes state of Michigan (which I'll be going solo to) and then my brother is getting married in October, in which Kaitlyn will be the flower girl and I'll be my Brother's only "attendant" or best woman I guess? The kids and I just returned from a road-trip to LA, where I helped my mom throw a bridal shower for my future Sister-in-Law. and again, the road trip was ok! Compared to the last time I drove to LA and Quinn screamed the entire time. It wasn't bad and I would do it again! (Is this how things are supposed to be? I wouldn't know.) Driving at night helped a lot (for example I got home Sunday night at 1:30am)
We just ordered passports for the kids and are maybe going to consider a real family vacation...stay tuned on that front!
WORK & MORE:
Whoever says that working in Real estate is "easy" has never worked in Real Estate. I find that I work 7 days a week. Often very late into the night to try to catch up. The year has been good so far, which is certainly great in this economy, but it's been very trying in terms of my free time. My children and my job take priority in my life and everything else (husband, blogging, free time, support groups, charity involvement, exercise, health) has taken a back seat. it's been hard.
I've taken on some listings this year that have been big time drains: (I tried to help an elderly & senile woman sell her home that was in a very bad financial situation, which ended up not selling and took an extra ordinary large amount of my time as one example).
I am the President of the Marin Women's Council of Realtors this year. It has kept me VERY busy with 5 trips (2 still to come), a monthly Board Meeting, a monthly meeting, committee meetings, fund raisers and more. As much as I've had a great time doing it and I think I've done a really good job, I will be every so happy when my year has come to an end. I think it's just been a lot of "extra" time that I just don't have. I'd like to start going to bed earlier at night. I'd love to send my nanny home early and spend time with my children.
I'll be turning 44 in a few weeks. Wow. How is it possible that I'm going to be 44? I graduated high school in 1984! How is that I have reached the status of middle age? What is middle age anyways? Isn't 40's the new 30's? I don't want to be 44.
Lots of Pictures, but I'll put them in another post!
Saturday, June 05, 2010
Sunday, May 09, 2010
We had a fun day at a winery in Sonoma. It was a bit cloudy, cold and rainy, but at the end the sun came out and we were so happy to be out with 5 other groups of our friends! They had a jumpy for the kids, music, bocce ball and BBQ (and of coruse wine!)
Kids are wiped out, mom is tired and I'm ready to put my feet up on the couch!
Just saw this recently and had to post it:
I feel so lucky to have 4 Mother's:
My mom, my Step-mother, my Mother-in-law (and my ex-mother-in-law too!);
Mommy to Mom to Mother
Real Mothers don't eat quiche;
They don't have time to make it.
Real Mothers know that their kitchen utensils
are probably in the sandbox.
Real Mothers often have sticky floors,
filthy ovens and happy kids.
Real Mothers know that dried play dough
Doesn't come out of carpets.
Real Mothers don't want to know what
The vacuum just sucked up...
Real Mothers sometimes ask 'Why me?'
And get their answer when a little
Voice says, 'Because I love you best.'
Real Mothers know that a child's growth
Is not measured by height or years or grade...
It is marked by the progression of Mommy to Mom to Mother.....
The Images of Mother
4 YEARS OF AGE - My Mommy can do anything!
8 YEARS OF AGE - My Mom knows a lot! A whole lot!
12 YEARS OF AGE - My Mother doesn't know everything!
14 YEARS OF AGE - My Mother? She wouldn't have a clue.
16 YEARS OF AGE - Mother? She's so five minutes ago.
18 YEARS OF AGE - That old woman? She's way out of date!
25 YEARS OF AGE - Well, she might know a little bit about it!
35 YEARS OF AGE - Before we decide, let's get Mom's opinion.
45 YEARS OF AGE - Wonder what Mom would have thought about it?
65 YEARS OF AGE - Wish I could talk it over with Mom.
The beauty of a woman is not in the clothes she wears, the figure she
carries, or the way she combs her hair.
The beauty of a woman must be seen from in her eyes,
Because that is the doorway to her heart,
The place where love resides.
The beauty of a woman is not in a facial mole,
But true beauty in a woman is reflected in her soul.
It is the caring that she lovingly gives, the passion that she
Shows, and the beauty of a woman with passing years only grows!
Wednesday, May 05, 2010
Here are some answers as best I can as this is NOT easy...
“Did Kaitlyn suck from the bottle ever in NICU or at home? “
--Yes, and she breast fed some too, but at about 3 months post due date she stopped and at that point we knew we had to go from an NG tube to a Gtube.
“Did she have feeding tube from the birth? “
--All micro preemies get fed via feeding tube, as they do not have the ability to suck as they are too premature. Normally at about 32 - 35weeks gestation babies can feed orally, but because they are so small they tucker out and are still supplemented with a feeding tube.
“I know she learned to eat at one feeding program but before this program did she ever suck, chew or swallow? “
--again she used to "suck" but after she lost the suck reflex at about 4 months post due date (8 months old from birth). We tried and tried to feed her other foods orally but she took very little and did not know how to chew.
“How old she was when she started to suck and swallow?”
-already answered above.
“ How did you motivate her to chew and eat like regular kid?”
--Chewing was VERY VERY difficult. We first had to teach her to eat (only purees) all intensive feeding therapy will start with purees to teach a child/baby to learn to swallow first. MANY months after that we started trying to work on chewing. It was VERY difficult. Even though she started taking most of her nutrition via mouth at that point, she had no idea how to chew food (even though she was 3 years old) . WE worked VERY hard with a Speech OT as well as our feeding therapist. We did chewing exercises with her every day. She “chewed” on slim jims as well as therapeutic Chewy Tubes. This was not easy and it took a LONG time. I never thought she would “get it”. But FINALLY she did. My main point is you can’t do this alone, you need help and you need to know it’s a lot of work and a lot of time. You may think that children should “know” how to chew, but they don’t If they never learned to eat along the “normal” baby timeline, then they have to be taught. Eating is NOT reflex, it’s learned. So if the baby doesn’t go through the normal self learning at an early age, you have to teach the child what to do.
“My daughter had feeding tube from the birth so she never sucked or swallow. She is three and half years old and we have been taking her to the feeding therapist last two years but she still can't figure out how to chew. She takes only liquid and semi liquid food and she does not have feeding tube anymore. She had tube three years. She packs everything inside of her cheek and our therapist always says that she never learned to suck so that's why it's taking that much time but it's been two years so it is really long for anybody to learn and also she does not have any motivation so she doesn't care for chewing and never feels hungry. Feeding is a biggest trauma for her. Is it true that if they have tube that long that they will never learn to chew?”
-no they will learn to chew, but as I said, it’s hard and you need help. Don’t give up… I never thought Kaitlyn would chew. BUT she does now eat like a regular toddler! It’s possible. I’m proof.
Just a few more thoughts to add to the above:
Slim Jims were one of the first things that K liked to "chew on" She didn't bite pieces off (good thing as she wouldn't' have known what to do with them anyways) but because it had some flavor to it she would bite. Our OT made her do bite practice on chewy tubes. (you can by them from the TalkTools website). We would have her do bites on both sides of her mouth. The OT always felt that K didn't have the jaw strength to chew, I personally didn't think that was the main issue, it was really that she had no idea what to do. The OT also had K chew on chewing gum. She would put sugar chewing gum (and let K choose the flavor) inside a cheese cloth bag and put it between K's teeth and worked with her to do 5 bites on each side. We would work up to more bites over time.
With food at home, we eventually would use a NUK brush to "place" pieces of food on her back molars. I remember telling her over and over use your back teeth, as she would always try to chew with her front teeth (this was months after we started chewing training). We would place a piece of soft food (like canned green beans were a good one) on her molars. We would practice on both sides before we then moved on to the puree meal.
Hope this helps!
Friday, April 23, 2010
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:
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!