Cardiology

Yesterday Parker had his first cardiology appointment to follow up on some issues he had at birth.  We weren't really sure how it would go because as babies get older their hearts change, and even after his two Echocardiograms in the hospital, he showed improvement. That being said, we also know that Down Syndrome often carries with it heart defects and difficulties.

After an EKG and another Echo, we learned that Parker has an Atrial Septal defect-- in other words, a hole between his two upper chambers.  On the good side, there is tissue floating in the middle of the whole, suggesting that over time it may get smaller.  Additionally, he shouldn't show much in terms of symptoms unless there is another contributing factor, like a respiratory infection.  

On the bad side, it is a moderate sized hole ---about 5-6 mm.  His doctor, Dr. Carr, estimated that Parker has a 50-50 chance of needing some kind of intervention (either surgery or catheterized repair).   

Obviously this wasn't the news we had been hoping for, but at the same time, it could be much worse.  He won't need surgery as an infant and is free of life-threatening or stressful symptoms.  We will hope and pray that his hole gets smaller so he doesn't need surgery.  Let's think of it as a place for more love to flow in and out :) Corny...yes, but corny gets us through the day!

1st Day

What a crazy day!  After a night of little sleep and nerves running high (Parker slept 11 hours!), we made it through our first day apart.  It was -8 (windchill -25) this morning...which of course meant our cars were unhappy about starting.  Matt's wouldn't start at all, and ended up needing help from AAA --so little man almost didn't make it to his first day of daycare!

After crying on the way out the door and once in the car, I did pretty well once I got to work.  It was good to see everyone and get back into things, even if I was counting the minutes until day's end.  

Parker's day care was awesome --they emailed me several times and even sent a picture! Matt also went to visit him during his lunch break, which made me feel better.  They had a sign welcoming him, and were so eager to learn about anything they could do for him.  They even said they would like to come with us to GiGi's sometime!  So relieving...

What I didn't account for was the fact that I really only got about 5 minutes (literally) of awake time with Parker before feeding and bedtime.  Between that and eating, pumping, washing all of his bottles and organizing his daycare items I feel like I hardly had any time with him.  The thought of that makes me so sick.

Kudos to all of the mommies and future out there...I feel for you and admire your strength.  It is easy to empathize with working parents, but until you are one, the emotional connection can't really be understood.  I guess my motto from now on will be to use all of my time wisely and cherish the moments with him!

Last Day of Leave

P-man and I had a peaceful, snuggly last day of maternity leave.  Aside from a successful first speech therapy visit, we relaxed and read stories, watched crime dramas, and cuddled.

 
Tomorrow, it is back to reality...albeit, a revised reality.  For me, it will be my first day at this job non-pregnant --which should be both more comfortable and more painful at the same time.  I will love being able to walk up the junior high stairs (3 flights!) without having to stop and breathe, but will miss having my inside companion.  I will love getting to see the kiddos and help the teachers, but will miss the natural conversation-starter that is pregnancy-- though I'm sure a new baby is a great conversation starter too.  And I will love my independent, busy, challenging career, but I will desperately miss seeing every detail of Parker's day. There is a small part of me that is excited to get back in the swing of things...I just wish I could find a way to live both lives...working professional and stay-at-home mom.  I'll have to work on that one!

Overall, I know Parker will be in great hands.  His Daddy will safely take him to daycare and back, saving me from having to drive him in the snow....because driving in the snow terrifies me.  Maybe they will even get to eat lunch together sometimes.  The teachers at Bright Horizons seem like they will love him and meet his needs the best they can, and he will be mere footsteps away from his cousins.  

Overall...all of the people in his life will be doing everything they can for him...and that is the best we can hope for! 

FaceTime Fun!

Technology is amazing...so thankful that it lets us keep in touch with our family!

Parker got to see so many people today thanks to FaceTime!  Grandma Preis, Nonna, Grandpa Manoni, Great-Grandpop Cucchiaro, cousin Robert, and Uncle Doug!

House Hunting

Basically, we outgrew our apartment when I moved in :)  It has decent square footage, is nice looking (without all of our clutter), and has a great patio...but the arrangement of space is not enough for us.  We started house/condo hunting about a month ago, as we always do every year, and found a house that we loved!  What we didn't love were the hidden water contamination problems with the neighborhood and pending lawsuit against the builders.  So even though we are back to square one in our long, very picky search, it was nice to know that there might be options out there that fit us!

Hopefully, we can have a nice, relaxing day before we start my first week back at work and Parker's first week of daycare...free of houses, bills, insurance claims, to-do lists, and packing lists and full of lots of snuggle time.

Love this little boy! 

PT Evaluation

The best part of our day was our last visit to GiGi's!  We spent 45 minutes chatting with and meeting more new, wonderful people in the Down Syndrome Awareness community.  Unfortunately, we won't be able to go again until the Saturday group in February...BOO!  Hopefully we can network and make friends with people who are available outside of work day hours!

Parker had his physical therapy evaluation today, which was quite humbling.  I received the message again that Parker is the one who owns this journey...and he will show us what he can do on HIS schedule.  

Today was the first time we have been told that Parker is actually showing delays...and admittedly, that was hard to hear even though I knew it was coming.  He lifts his head so well and rolls over...all things that many other babies his age (typical and DS) aren't able to do...but we learned that he is using all of the wrong muscles to do these things.  

Our goal is to teach Parker how to use the correct muscles to do these same things...like using his arms and shoulders to lift up instead of his belly and back extensions.  He is also showing a preference for turning his head to the right side that we can work with him to correct.   Just like always, we will do anything we can to help him succeed.  We just need to learn that this will be at his pace, not ours.   Love him!

Weekend Fun!

It has been a great weekend- we are sad to see it go!  Parker had his first audiology test (ABR) on Friday after failing his newborn screening.  He passed for both ears!  This rules out permanent hearing loss, which we are very thankful for.  They will see him again in 6 months to monitor for any hearing loss due to fluid build up--and probably continue to see him throughout his childhood.  Awesome news-- about time the little man caught a break! 

Friday night, Parker got to meet his friend Colin (who is almost 1!) and we got to have dinner with Kristen and Eric!  It is crazy to think that these boys will be thought of as the same age some day when they seem so different now!  The puppies got a chance to play, too, which Chase really needed.  He has been so much better with Parker than we ever thought he would be! Proud of him!

Saturday was an awesome day too!  We started it off by heading to GiGi's Playhouse for group classes-- we learned a few tips for the next few months from a volunteer therapist and met some more new friends!  I can't say enough good things about our time at GiGi's thus far-- it has been so enjoyable for Matt and I.  I can't wait to go to group play next week-- and am sad that it will be our last week to go because I go back to work.  We continued the day with some house/condo hunting-- we were unsuccessful but it was still fun to bring Parker around with us.  We ended the night with a good nap (hey...the sleep deprived think very highly of a little nap time) and dinner at Bahama Breeze.  Parker was very enamored with a plant at our table, so we think he enjoyed himself too!

Today, we got to have lunch and a trip to the mall with Auntie Morgan.  She showed him one of his prized smiles while sleeping.  Hopefully his social, purposeful smiles will come soon!  

Dear Parker

Dear My Precious Parker,

After such a good day, I have had a moment of weakness again.  In looking at pictures from the 2013 Gala for GiGi’s Playhouse, I got teary-eyed, not out of joy, but out of paralyzing fear and a brief wave self-pity (though they are getting shorter and further between now).  I hurt so badly knowing that people might look at you and immediately pity you and us…and such shame for that pity.  You don’t know any better…you will just know your own life as we all do.  It is your Daddy and I that hold the grief…the grief for all of the hopes and dreams we had for you that right now we think are lost.  I know that soon enough, though, you will show us YOUR hopes and dreams.  Maybe we will be lucky enough to accept them and support them with calm serenity.    

I adored meeting all of the sweet kids at GiGi’s…but that doesn’t stop me from wishing so desperately that you weren’t one of them.  I wish I could be an outsider coming in to volunteer instead of being one of the participants.  I wish I had other babies first that could protect you and spoil you like GiGi’s siblings do.  There are so many selfish things that I wish.

I hope that GiGi’s becomes a place where I don’t feel shame for these thoughts, and where you can make friends in an environment where people aren’t staring or pitying and are just our new normal.  I hope it becomes a place where you gain the confidence you deserve to have, and that Daddy and I gain the peace we need to have.

I am so terrified, but I know in a few minutes I will walk into our bedroom and see your peaceful sleeping face and know that my heart is still full.  I know that tomorrow morning when I am feeding you and you stare into my eyes that I am so in love with you.  I know that my heart will just melt when you have your first definite smile.  And I know that my heart will break when I have to go back to work and leave you with someone else.   These certainties are what keep me going.  These certainties are what keep the anxious worries about your future at bay.  And these certainties are what lets me know that I am your mommy…and no matter what you can and can’t do as you get older, that is a GIFT from God that I will never deserve.  

I Love You More Than Anything...

Mommy

GiGi's

Today was an incredible day...one that I will never forget.  Parker and I began it by going to meet Daddy for lunch!  On the way...I saw a truck with the sign "Holland Special Delivery" on it --and if you've read the Holland story below, you know why that was so awesome.

After lunch, Parker and I went over to GiGi's Playhouse for the first time.  This is a place that has multiple locations across the county and is designed for Down Syndrome support and awareness.  We were immediately greeted with several open arms, smiles, and excited positive attitudes like the people there had been waiting for us.  
It was an amazing experience...talking to other moms who have been through this, and to see their beautiful, thriving children.  Parker was out of my arms within the first two minutes --being passed from person to person!  He got to be on camera, see firetrucks, and snuggle with friends all in one day! 

It was inspiring to meet so many people that are so successful in their lives and are focusing on the positives...the things our children CAN and WILL do, instead of their weaknesses or risks.  We even got to meet GiGi herself, and mom Nancy--who are people that have obviously touched so many lives.

My biggest hope is that Parker and our family can help others the way that GiGi's has already helped us.  At the end of February, GiGi's Playhouse puts on a Gala to support the program--we will be there and are so excited! 

Daycare

Yesterday, I went to visit the daycare center at Sears that Parker will be going to.  I met one of his teachers, and got to meet the other babies that Parker will be with each day.  I stayed for a while, watching the kids and teacher from so many perspectives-- from the standpoint of an observer, an evaluator, a teacher, and a mother.  It is hard to see one person choose the order of who to care for while knowing that your child will be one of the babies crying and waiting at some point.  

The logical educator in me knows that this is good...it will teach him how to handle social situations, get him used to routines, and teach him how to have patience and wait his turn.  But the hormonal, over-protective, anxious mother in me wants to be there for every moment, be the primary supporter for my baby, and give him everything he needs the second he needs it.  I also want to make sure that as his needs become more intense and more specified (i.e. language/development based), there are appropriate plans in place that are being carried out the best they can.  These are my battles, though, not his.  He will be happy and perfect...I am the one that needs to deal with them!

 The teacher I met won't be his primary one, but I still appreciated meeting her.  She was so kind and willing to listen and learn about Parker, immediately wanting to hold him and even gave me her personal email so I can keep her updated on his progress and therapies as they apply to his care.  She began telling me the story about the trip to Holland, and got very teary-eyed --telling me that she is so excited to be with and learn from Parker.  

For a situation that is so hard for me....leaving my baby and trusting someone else to meet all of his needs --special and otherwise, she was exactly what I needed...a kind, motherly person that hugged me when I left and recognized that I was struggling.