Wednesday, May 30, 2012

Mommy Time

Wow - just writing the title I had conflicting emotions of guilt and pleasure!  The things we moms do to ourselves.  I'm smart enough to know that I need a break from the kids I love more than life itself but not smart enough to do it guilt free.   This past weekend my best friend and I took an overnight trip to a fabulous Inn & Spa.  We ate lunch (with a glass of wine), sat in the sun, had facials, used the steam room, had high tea, read and ate dinner (with a bottle of wine) while it was hot without having to cut anything up into tiny pieces or make any trips to the restroom during dinner.   I had the best time just talking & living responsibility free for 24 hours.  It was heaven.  But even this small piece heaven comes with a price, guilt.  I feel bad that my girls weren't perfect angels for my husband, I feel bad I missed a cookout at another friends house, I feel bad I didn't get laundry done.  I logically know its crazy, it is not just OK but very good for me to get away for a short time.  I just wish my mommy guilt gene would learn the lesson.  The girls were not upset at all by my absence and had a fabulous time on their "Daddy Weekend".  Ric has recovered from the ordeal and might even let me do it again soon next year.    And my guilt for only blogging once this week - well it will just have to ride out a few more days because we are headed to the beach for my brother-in-laws wedding and since I can't upload pictures to the blog from my iPad, it is going to be Monday before you see another post from me.  I will try to forgive myself if you promise to forgive me under the compromise that I post a bunch of beach pictures of the two most adorable kids on the planet early next week, DEAL?

Tuesday, May 29, 2012

Just like riding a bike

Well exactly like riding a bike!  Grandma & Grandpa found a great new to us bike for Cate at a garage sale so we finally got up the nerve to give it a try.  Our neighborhood is not a good place to learn to ride a bike - very hilly and quite a few cars.  We had been meaning to take the girls and the bikes to the park to learn but just haven't gotten it down.  So finally we pushed the bikes down to the only tiny cul-de-sac  in our neighborhood and gave it a try.  The girls did exactly the opposite as we'd expected.  Lucy tried pedaling a couple times and gave up completely!  She was not a fan - and I'm not sure if it was the pedalling action itself or her first time really having to practice something instead of just knowing what to do.  Cate LOVED it.  She practiced and practiced until she was doing it herself (with the training wheels).  She even rode home making Ric's trip easier - mine not so much since I still had to push the tiny bike up a hill while keeping Lucy from wandering into the road.  Next time we are packing up for the park.

So a successful first bike experience for Cate!  I should have never doubted she'd take to it so easily.
Lucy likes the new accessories!

Cate's new bike!  Thanks grandma & grandpa

At the start of the lesson for Lucy - still happy here!

pedaling is hard to teach then it looks

gotta love the concentration & determination here as she figures out her feet

check me out!!!

Thursday, May 24, 2012

Pictures from Kindy graduation

Thank you to everyone who made such awesome comments on facebook or here and shared the video of Cate's "speech".  It was great to see the outpouring of support for her success.  I know that Ric & I are incredibly proud of her but it is so amazing to see how easily she can affect other people.

Here are some photos and a sampling of the songs from the performance.

grandpa's girls


proud little sis

my girls

Tuesday, May 22, 2012

when did I become a crier?

The title should probably be "Kindergarten Graduation of a child with Down Syndrome" so I'd fall into the blog search land and get more hits but the fact that Cate has DS had absolutely nothing to do with today.    She graduated kindergarten with a regular class just like all the other 5/6 year olds.  Not one of them cared she was born with a diagnosis - they only care she is their friend Cate.  Don't you love that???

I guess I shouldn't ask a question I know the answer to - I became a crier on 12/22/2005.  I never cried in public much before Cate was born.  Not at weddings, even my own wedding, barely at the very few funerals I'd been too - I guess tears were just not me.  Then came Cate and a diagnosis of Down Syndrome.  Those first days included a lot of tears, but ones of sorrow I hate to admit.  I had no idea then that I was opening the flood gates to so many episodes of happy tears.  I still don't think of myself as a crier so today I went to Cate's kindergarten graduation without a Kleenex or even a napkin.  Of course Cate had to show me - she had me all but sobbing!  I promise photos & maybe some more video tomorrow but I can't wait to show you a tiny bit of the video right now. 

Cate's school is amazing!  I have no idea how those kindergarten teachers did it but they had a perfect performance of 100 kids. Not one ran off the stage, no one cried, everyone seemed to know the words & motions.  Now this isn't just for one song - it was 5 songs, like I said AMAZING.  The kids were so adorable as they sang "I will Survive", "Kindergarten Rap" & "1st Grade Here I come".  These brave teachers even did something very special.  All the kindergartners walk across a little bridge to symbolized their crossing to 1st grade.  As they got to the middle each one stopped at a microphone, said their name and what they learned in kindergarten before finishing the crossing - and they did it, every single one of them.  They said things like "I learned to read", "I learned math", "I learned to make friends".  Cate never did it once in practice over the last month.  Her para-pro, Ms L, said she was still refusing when they were lined up on stage today, saying "I'm not talking".  So when it was Cate's turn, Ms L walked with Cate to the microphone prepared to say her name when she froze.  Cate of course changed her mind as usual - instead of freezing she turned to Ms. L and said "I don't need you" and pointed to the side of the stage.  Well, I'll let you see the rest for yourself - turn up the volume on this one and I'll get my tissue ready this time.

Cate's speech was perfectly clear in person but in case you had trouble on the recording she said "Hello, my name is Cate and I love my family, my mommy, my daddy, my grandma, my grandpa and my sister.  I love them and my grandparents." 
OK so she didn't do what she was suppose to and say what she learned in kindergarten but as she always does - she spoke from her heart.  I am not ashamed to admit I had tears streaming down my face (thank you to the lady next to me who handed me a napkin - bless you)  but our family wasn't the only one shedding a tear, there were many misty eyes in that room.

How can you not love this girl?  She is just the BEST!!!

Friday, May 18, 2012

Our Big Weekend - Part 3 - Dance Recital

So my last post left you with me rushing Cate out of the pool after her last heat of the swim meet and starting the process of getting ready for the dance recital.  The dance recital call time was 1:00 at theatre 10 minutes away from the pool.  I pulled Cate out of the pool at 1:05!  I had of course told the dance director that we'd be late and would do our best to be there by 1:30 and we hit the mark pretty closely because Cate actually was very cooperative.  She let us put make up on her, do her hair with hairspray and rush her through getting dressed.  She was also great the recital.  She sat in her seat with her class until time for them to go on then did the dance perfectly and left the stage with only a little guidance.  I was worried about the leaving the stage part.  She did great in the two rehearsals earlier that week during the dance but in both cases she refused to leave the stage arguing she want to twirl and "talk to people".  My little diva wanting the spotlight on her own! 

But on performance day she did awesome.  It was super cute and I was so proud of her.  I took video on a rehearsal day but you can't really see her so I'm not going to post it.  At least I have some good post-performance shots!
The girls danced to "You've Got A Friend In Me" from Toy Story 3 - the version with the Latin music ending.  All the girls in Cate's class are between the ages of 3-7 and have Down Syndrome.  They each have a teenage helper during practice and during this performance.  It is a great program for the girls to learn so many life skills about being part of a group on top of the great exercise and coordination work.  Their costumes were cowgirls and the helpers were lassoed horses!  Plus you won't find anything cuter than this class!!!
sitting patiently with her class at rehearsal


showing off the dance skills!

flowers from Cate's helper Megan

the rose is from us and she loved getting flowers - such a girl!

proud daddy

proud sister - you should have hear her clapping!!

Thursday, May 17, 2012

Our Big Weekend - Part 2 - the Swim Meet

Saturday was the big CRAZY day.  I mean really what are the chances that a 7 month dance program and a 10 week swim program starting at different times of the year would decide to have their final events on the same day - 2 hours apart?  So using every little bit of organization skills I could muster we decided to do both - I just couldn't tell Cate no.  And I'm so glad we decided to do it because for once everything went smoothly. 

The first event on Saturday was Cate's Adaptive Swim Team meet.  There are five or six "practice group" under this organization that Cate practices with on a weekly basis.  Each of the kids has a special need of some kind.  In Cate's group there were quite a few kids with Down Syndrome but as a whole there is a little bit of everything for CP to mobility issues to Autism.  These kids are so inspiring, upbeat and competitive it was amazing to watch.  All of these groups come together for an end of session swim meet.  The heats for each race are set up based on times that were taken during the last practice and there were 5-8 kids per heat.   We arrived at the pool right on time (amazing for us I know!) and got our seats while Cate did a team pictures, stretching and a warm up lap.

 I talked to Cate a bunch of times about how this race would happen and she watched the kids that went before her pretty closely.  Sure enough when the coach said "girls get ready" Cate got right into position.

When that whistle blew off she went with no hesitation!!  She's a natural!!!

You'll notice she is wearing a little float which is allowed at these meet.  She wears it during practice because they practice for a full hour and she gets tired towards the end.  She didn't need it for the race but since she practiced in it we decided to keep it on her for a feeling of security.   So she got a good start and was plugging along with the pack until about about half way when she started to catch up then pull up next to the first place girl.  We were all screaming & cheering like crazy - she put her head down one more time got a couple good strokes in and WON by a half body length!!!! 

 She got her ribbon right away and was so proud of herself.  I was over the moon proud of her and her daddy couldn't stop smiling!

The coach of Cate's team is one of her former aqua therapists whom we LOVE.  She played a big part in teaching Cate to swim so it was awesome for Cate to show her the blue ribbon.

Cate also competed in the 25 meter backstroke but she was last by quite a bit.  She really didn't start working on the backstroke until a couple weeks ago.    She can't quite get in a good position by herself so a coach got in to help her after some struggling.  After that she did better and she refused to give up.  She did the whole lap but it took over 3.5 minutes.  She is awesome !!!  I was just as proud of her for this 5th place ribbon.

After she finished that second race I grab her out of the pool and made a beeline for locker room to transform my athletic swimmer into a pretty dancer!  More on that tomorrow, for now I'll leave you with the video of Cate's race (go straight to the blog to see it if you get this by email).
Sorry for the yelling and the motion of the camera we were just too excited!!  This video has been transfered one to many times to it is a little blurry.  If you want a link directly to the You Tube version shoot me an email and I'll send it to you since I have this blog protected from copy.

Tuesday, May 15, 2012

Our Big Weekend - part 1

Talk about a crazy weekend, I'm amazed we all survived!  This weekend involved a park opening celebration where Cate's class was singing, dance recital, swim meet, and mother's day.
It all started pm Friday night with a very tight schedule - 3:30 dress rehearsal for dance and 5:30 kindergarten performance at a new park opening.    Since Cate doesn't get out of school until 3:15, I had to go inside and check her out then drive the 35 minutes to the rehearsal, hurry to get her into costume and the makeup she was telling me she would not wear.  We got to the theater only a little late and Cate was semi-cooperative and even allowed blush, eye shadow and lip gloss which was more on her face that her lips!  I'm at a disavantage being a stage mom because I barely take the time to wear makeup myself.  She was ready about 1 minute before her class lined up to go on stage.  I was able to take a video of the performance since we weren't allowed to film during the read performance but I haven't be able to upload it yet so look for it in part 3 of our weekend post!  Cate's class was adorable!  They did great at rehearsal then all except Cate left the stage afterward.  Cate on the other hand had to be escorted off by an extra teacher and her buddy in between twirls and bows!

waiting with her dance class

So after she was dismissed we ran back to the dressing room to change back into her clothes and did our best to wipe off the makeup.  We jump in the car and rush back 35 minutes towards our house - it was 4:45 when we left so it was cutting it close but still possible.  Until of course I hit every one of the hundred stop light in between us and the park.  We got there about 5 minutes after Cate's kindergarten performed their song.  Cate was not phased, I wanted to cry!  But since everyone at the opening was happy & excited I got into the mood soon enough, especially after Cate's said "I want to go find my friends"  and my heart melted (her not having friends is my biggest fear)!  So we met Ric & Lucy there and had a great time as the city provided hot dogs and hamburgers and the kids played on the new playground.

So Friday was a fun kick off for our crazy weekend even if we missed one goal - more on the fun Saturday later.

Wednesday, May 9, 2012

Happy Heart Day - 6 Years Post Surgery

I'm not even going to try to describe the place I was in 6 years ago today - I'm just not that good of a writer and truth be told I have blocked out huge patches of the day and the ones following.  6 years ago today we held our baby in our arms and wondered if it was the last time we would be blessed to do it.  6 years ago today we gave our baby to a team of people with years & years of training and experience to operate on a heart that wasn't much bigger than a walnut and it terrified us.  6 years ago that team did everything they could to keep our fears at bay and successfully repaired the little hole that threatened the life of our baby.  Because of that team we are able to celebrate this Heart Day anniversary and we are so so so thankful.

Sorry for the length of the rest of this post but all I have is my memory and copies of the emails I sent my friends.  These are the pre-blog and CaringBridge page days for me, remember!  So here I want to retell the whole OHS story as a record for me before I forget any more and also since many of you are moms of young ones some who are facing this in the future.

Cate was born with a Complete Atrioventricular Septal Heart Defect (AV Canal defect).  Here is the medical information for this defect:
Atrioventricular septal defects (AVSD) are a relatively common family of congenital heart defects.
Also known as atrioventricular canal defects or endocardial cushion defects, they account for about 5 percent of all congenital heart disease, and are most common in infants with Down syndrome. (About 15 percent to 20 percent of newborns with Down syndrome have an atrioventricular septal defects).
The primary defect is the failure of formation of the part of the heart that arises from an embryonic structure called the endocardial cushions. The endocardial cushions are responsible for separating the central parts of the heart near the tricuspid and mitral valves (AV valves), which separate the atria from the ventricles.
The structures that develop from the endocardial cushions include the lower part of the atrial septum (wall that divides the right atrium from the left atrium) and the ventricular septum (wall that divides the right ventricle from the left ventricle) just below the tricuspid and mitral valves.
The endocardial cushions also complete the separation of the mitral and tricuspid valves by dividing the single valve between the embryonic atria and ventricles. An atrioventricular septal defect may involve failure of formation of any or all of these structures.

So basically she had a shared valve between the top two chambers of her heart with a hole beneath that which allowed oxygen-poor and oxygen-rich blood to mix.  This defect made her lungs and heart work much harder just to circulate blood to her body, if it had not been fixed she would have had breathlessness, low energy, and eventually probably would have had heart failure as a result.   Cate would not have been a kindergartner, not be taking dance class, wouldn't be on a swim team and probably wouldn't sing at every opportunity.  Cate would not have been the normal child she was meant to be - it is as simple as that.

Cate was a chubby happy baby prior to this surgery - not a sick or weak baby (which  maybe even makes it harder when you hand your baby over to the doctors) but even then she was taking Lasix, a drug to prevent congestive heart failure, because there were signs of stress on her heart & lungs.
4/15/2006 - Cate at Easter

5/4/2006 - Cate's favorite bouncy chair & lamb (the one which Ric would hold for the entire surgery)

5/4/2006 - bath time
The morning of the surgery we had to be at the Children's Hospital downtown for a 7:15 am surgery time so we were up and moving by 3 am (not that I could sleep anyway) but we still managed to take one picture.  This was a time pre-cell phone cameras for us and a camera was not on our list of hospital essentials so we don't have a CICU picture of Cate.  In some ways I wish we did to document that event but in others I'll be happy to never see a sight like that in my lifetime.
ready to go & Cate's face says "why are we up at this crazy hour??"
The morning of the surgery we checked in at 6:30 am then the nurse gave Cate a sedative by mouth to keep her calm in the OR - wish I could have had a dose or two or ten.  She fought off the sleepiness until 7am and we all took turns holding her (grandma & grandpa were there too).  We were allowed to carry her to the OR door then handed her to Gretchen - the most awesome nurse ever.  Gretchen called us in the waiting room every half hour to keep up updated during the surgery.  The first call was to tell us Cate was fully sedated and to say that once she laid Cate down on the table, she opened her eyes looked up at everyone and smiled - so they were all completely charmed from the first minutes!  The surgeon repaired the holes (they had found a third surprise one during pre-op) and fixed the valve.  Cate was on a heart-lung machine for nearly 2 hours, but they got her off it in record time (the nurse had said it would be about an hour and it was only 20 minutes before they were calling to say her heart was under her control).  The doctors did an internal ecocardiogram prior to closing her chest so they knew everything was working correctly before they repaired her sternum and sewed her up.  The surgeon and a cardiologist both came to talk to us and told us it was a perfect repair and no problems were expected.  Cate was then moved to the Cardiac Intensive Care Unit (CICU).  When we first saw her it was a shock because there were so many tubes including the huge chest tube (over an inch round) a couple inches below her incision.  The first CICU milestone was for the major chest drainage to stop so they could start getting her off the ventilator.  In the CICU there is 24 hours nurse care, with each nurse responsible for only two or three patients and no parents are allowed to stay the night.  One thing you learn in the CICU is that as bad and scary as your situation, its not the worst one there and you have to be thankful.  Cate was obviously well cared for so Ric & I went home and managed to sleep that night with only a couple check in calls. 

By 10 am on day 2 Cate was off the ventilator and breathing on her own.  She was very unhappy at this time because she was starving since it had been almost 36 hours since she had eaten but we still had to wait until 3 pm with no issues before she could have something in her tummy.  She didn't seem to be in pain during this time and was pretty sedated although she did squirm and fuss some and we were not allowed to hold her while in the CICU.  There was one scary moment that day when she went a little too far under sedation and her oxygen stats dropped rapidly but the nurses were able to wake her up and increase the oxygen to get her back on track.  She was still oblivious to her surroundings and us so we went home again that night. 

On day three Cate was taken off morphine so she was more alert and recognized us.  Her appetite started to come back and she took her milk from a bottle like a champ.  This was the day they also started weaning her off oxygen.  They took a couple of the smaller tubes and the pacemaker wire off on day 3 as well - the artifical pacemaker coming off was a huge milestone since damage to the pacemaker tissue is one of the big risks of this surgery.  That night they moved us to the step down unit where Ric & I needed to stay with her, but a couple hours after they moved us while I was feeding her, she had a small seizure - not shaking but she went rigid and her eyes twitched for quite a while.  So back to the CICU we went for more testing and monitoring.  Ric & I stayed the night at the hospital in the little sleeping rooms they provide by lottery (the mom who got our step down bed opened up a room for us).   After a night of monitoring and an EEG it was decided the seizure was of unknown origins but that it was most likely related to an electrolyte imbalance.  They moved her into a room that afternoon and she was a happy baby since she was alert and the chest tube came out - another huge milestone.    On day 5 they weaned her off oxygen and took x-rays to verify her lungs were clear then removed the last chest tube much to my relief - it was hard to manage holding her with those heavy plastic tubes in the way.  That day and the next were perfectly uneventful and involved us taking turns sleeping, holding Cate, feeding her and even giving her a much needed bath.

Cate came home from the hospital on Sunday May 14th - it was absolutely the best Mother's Day present I will ever receive.  She came home taking a few different medications but she was off of all of them by June that year.  When she came home she didn't have any stitches, only surgical tape on the incision.   Her care was pretty much like an infant except we had to be extra careful to prevent falls and could not pick her up under the arms.  We felt even more blessed that day we got home because not only did my sister in law keep our dog so she didn't have to be boarded, my parents cleaned our house and did our yard work so we were actually able to catch up on some sleep.
daddy not taking his hands off his girl even with both of them asleep

we did story time ever night from the day Cate came home from the hospital after her birth and still do, the first day home from Childrens was no exception

By the time we had our follow up appointment on 5/18,  Cate was pretty much back on her normal schedule.  She was playing with her toys and had started smiling again.  In my update email that day I wrote she was much more cranky then normal and we thought she had some soreness and the medications were upsetting her stomach.  I attached these pictures to the email I sent out to thank everyone for the help during the post surgery time.  We had so much help, even our neighbors, most of whom we had never met, got together and brought us full dinners every night for at least two weeks.
this bear was a gift from my team at work - she still plays with it

this overhead play yard was always a favorite but it became invaluable post surgery

This is 9 days post surgery - the bruising cleared up soon after as did the marks on her face from the tape but that round sore under the incision where the chest tube was took forever to heal - it is still a good size scar
By the end of May 2006 Cate was pretty much back to her pre-surgery self.  There was a small heart murmur they thought was most likely at the edge of the repair but eventually it closed itself up.  By that time Cate was happy and eating like crazy.  We had added an ounce of milk to each feeding plus rice cereal and she had gained almost a pound to come to 12lbs 11ozs.  On May 30th we were off all but two medications and were released from the surgical care to only having monthly appointments with our cardiologist.  I think those lasted until the end of the year when we were released to yearly appointments with him that we still keep up with now. 
Cate - 5 months

Memorial day 2006 - getting her first "real" food
Today six years later her scar is a faint white line about 3 inches long and is a reminder of what she went through and what a brave baby she was that day.  We still celebrate heart day because we will never forget what a miracle it is that our baby is healthy and active.  If Cate was born 50 years ago she most likely wouldn't have the same life, she would be weak and sickly, maybe she wouldn't even be here to brighten our lives.  We are so thankful for all the doctors and nurses, our families, friends and neighbors. 
We still celebrate Heart Day so that we never forget the gift we've been given.  This year I asked Cate's kindergarten teacher if we could bring in a special snack for the class to celebrate Heart Day.  She responded not just yes but created a day around it including a parent coming in to do a lesson on the heart.  We are so blessed to have her in Cate's life as well - every time I walk into that school I feel overwhelmed by support for my sweet girl and just know she will reach for the stars with their help.
Cate handing out heart cupcakes to the class

an art project on the wall at school
Thank you for indulging my long story!
Happy Heart Day!!!