So this is Christmas!

We survived Blaise's First Christmas! It was so much fun! We love getting so many Christmas cards and photos from friends and family this time of year, it helps us keep up on what is going on in everyone's lives. We even got our white Christmas, I'm not sure the last time I remember that happening!

On the Friday before Christmas, Mike, Blaise and I went to Grandma and Grandpa Sudmann's and Santa and Mrs. Clause showed up!!  We were all at the kitchen table when they walked in and Blaise did okay for about the first three minutes. It went downhill from there! HA! He had the typical reaction- he cried and whinned almost the whole time they were there! It was so funny, he would do okay for a second, than as soon as he looked back at Santa- more tears. We did get a few photos of him actually sitting on their lap.

Blaise stayed home with Grandpa Craig on Christmas Eve, while the rest of us all went to Christmas Eve Mass. The rest of the family came over for dinner that night, and Blaise decided to be the constant entertainer. As soon as their is a group of people- he turns it on and lights up and is a constant talker and laugher. I'm not sure who he gets that from! Christmas morning Santa came, and Blaise made out like a bandit! Good thing we brought the pickup! He did very good at opening presents, and really got into ripping off the paper. Of course- that was his favorite gift of all- the wrapping paper!!!

We celebrated Christmas with the Hartwell's at Grandma and Grandpa Hartwell's on Thursday night. This time, when opening his presents he actually got excited when he saw what it was! So much fun!

He is very determined and tries very hard to crawl, however has mastered the face plant very well! He gets his butt all the way up in the air, and uses his shoulders instead of his arms at this point. He will get it very soon I'm sure.

His new trick is scrunching up his nose and snorting. I have no clue where he learned this at, but it's on repeat right now!

We are so excited for 2013. 2012 brought us overwhelming joy and sadness, hope and despair. We are hoping for a very, very uneventful 2013!!

Our Christmas Gift This Year...

 

 Blaise, our miracle at 8 months old.

This is how I help mom bake Christmas cookies- chew on the spatula!

 This is how I help mom wrap presents- play with the ribbon!

The Hartwell's are so excited for a white Christmas! Enjoy the birth of Jesus with your family this holiday season!

 

Twas the night that you joined us...all eyes were on earth.

Awaiting with joy for a most special birth.
The angel's stood ready...for each need and care,
But all of them knew... that the Lord would be there,
And I labored on... and daddy was scared,
We waited...and wondered... and hoped we'd prepared.
We knew you were special...but so very sick,
Yet hope had grown in me... with every kick.
And soon it was time...into this world you came,
I heard a soft cry... then I called out your name....
And God held your hands...while the angels stood by,
Since I could not hold you...they hushed your soft cries.
One small angel looked to the father and smiled,
"Can you truly teach hope... through such a small child?
An infant so helpless...a baby so new...
Oh please tell me Lord...is this what you will do?"
God looked from the angel...to the baby's sweet face,
"Through him my young charge... they will learn about grace.
I penned this child's journey...quite a long time ago,
And through her great courage...such true love will grow.
Every hair on her head has been numbered you see...
It's my hope that through him... they will learn to see me.
Oh my little one with a special heart...
Great love will see you through...
See look that is your family...They've been waiting for you...
I send you to their waiting arms...for a time we'll be apart...
But I'll always be with you...for I live within your heart."
And so we held you in our arms...And thanked our Lord above...
In you...we see the miracle, of His undying love.
So when it's Christmas morning, And I watch my children play,
I'll need no great reminders, For I see my gifts each day.

Written by Stephanie Husted (Mommy to Braeden, HLHS)

Joy of Christmastime

The holiday season is upon us! What an amazing gift it is to enjoy your first Christmas with a child. Blaise has made this year more special than we could ever imagine. Every little thing and detail that surrounds this time of year is a hundred times more fun, more special and has more meaning. We think about the reason for the season each moment. God gave us such an amazing gift through the birth of Jesus, and we plan to make sure Blaise hears all about this story many times. It's easy to say our hearts our bursting with joy this year. Rest assured we aren't letting anything slip past us, and are making mental notes of everything that happens. Day by day, hour by hour we soak in all the precious memories and moments with him.

 Thanksgiving- the cute shirt aunt jenna made me!

 Hanging with the boys on the couch!

 photo shoot! so cute!

 dad is getting ready to hang lights!

 my jingle bear!

 my pretty christmas tree!

 my obsession is cups!

 brr it got cold out! all bundled up

 yep, i'm a standing pro!

 bath time!

 snow globes

at my last dr appointment- during the echo

 fixing the tires on my stroller

 waiting for dad to come back with my tree

 jumping at grandma and grandpas

What fun Christmas traditions are!! Mike, Blaise and I went to Santa's Woods by Blair to buy Blaise his very first Christmas tree. Getting a real Christmas tree is a Hartwell tradition that we've kept up, so this year was no different. Dad was a spectacular sport when it came to getting the tree. At Santa's Woods, you actually park your car by the barn, load up onto a wagon pulled by a tractor and ride out to the field to select your tree, than ride back to the barn to pay for it. Well, of course we didn't want to expose Blaise to other individuals and the cold elements, so Blaise and I waited in the car. Mike had to ride the wagon out to get our tree all by himself- amidst dozens of other families with children. What a trooper! I'm sure he felt a bit odd and out of place by himself. Blaise loves lights. So, of course he loves looking at the tree. He does very good when we allow him to touch it and actually will "pat" at the needles instead. He has several other Christmas favorites- a teddy bear that plays jingle bells, and he also loves snow globes. The twinkle and amazement in his eye are so fun! We have done a little bit of shopping for him, but hope to go this weekend to get him so more gifts and I think Santa might even pick out his gift this weekend too. Mike again punched the "good list" ticket by hanging Christmas lights outside off our roof. Of course, I insisted that he had to do this for Blaise's first Christmas. I just know he loves them! :) Blaise also has a small assortment of Christmas and winter pajamas that are lots of fun to wear at night!  The boys got the chance to hang in their pjs all day on Saturday when I went shopping with some friends.

Some of Blaise's current favorites include reading books, especially those that have pop-up window things on the inside pages that he call pull up and look under. He loves to play peek a boo! He finds it hilarious and will giggle non stop. He's got a great belly laugh! He loves his Johnny Jumper, and because of this also loves standing all the time now. He's rather stand than sit! We are still working on crawling, but he's got a really good stretch down, and can lift up his rear and creep.  Bath's are also lots of fun, as the splashing has hit an all-time high! He is still teething like crazy- I wish those darn things would hurry up and come in!  For about the past month, he has done terrible at sleeping. Terrible. It's not unusal to get up about 6 times in the middle of the night to give him his pacifer back. Usually that will do the trick, but he will be up again a short time later. We've tried almost every tip we can think of. This weekend he did really good and slept until 5 one night, and 4:30 the other. Last night he was back to his same game, so hopefully tonight goes better.

Grandma Peg has had a small break from babysitting and Blaise and I spent quite a bit of time the last two-three weeks staying at my parents in Treynor while Grandma Donna babysat. It was quite a bit of fun. We would also like to thank all of our other friends who've helped out with babysitting! The flu has been doing around quite a bit in Oakland, so we are taking all precations. I've even started changing my clothes when I got home from work before picking up Blaise to hopefully keep him healthy. 

One Christmas tradition we are hoping to start is taking Blaise to see Santa Clause. We aren't able to take him to see a regular mall Santa, or any other Santa because of there being too many kids and risks for sickness. We think we might see if someone has a Santa costume Grandpa Craig could maybe wear and Blaise could go visit Santa that way. There are so many times where Blaise seems completely normal, and so many times we are reminded how incredibly diffrent our situation is. I daydream and imagine what it would be like to be a normal parent, who takes their baby to the grocery store, or maybe even to run to the mall to do shopping. I honestly don't know what to do with a baby in public. I suppose next spring we will find out in a hurry!

Tonight, Mike, Blaise and I ran to a small western store near Oakland. We were the only people in there, so we brought Blaise in with us. He was soooooooo excited. He was so wound up, screaming and talking and waving his hands. I'm sure he was amazed with all there was to see!!! I feel so bad that he lives such a sheltered life and doesn't know a world beyond our home.

We will continue loving each moment of this Christmas!

Early Christmas Gift!

Blaise's appointment went really good today! He weighed in today at 16.1, yesterday at the pediatrician he was 15.7, so he is somewhere around there. Dr. Danford even thought we could stop fortifying his feeds now. His ECHO went really good. I was able to hold him, so he only fussed a little bit. This takes about twenty minutes or so to do, so I'm glad he behaved so good! He liked pulling on all of his cords and holding the wand and the echo tech's hand during it.  Dr. Danford reviewed what the ECHO showed, and said everything was looking very good, and his heart was performing as it should for its anatomy. We are still right on track for the Fontan surgery around age 2-4. His saturation levels were as high as 99 on the reader, and as low as 82 when he was moving. They took the number as 89- which is great!  Dr. Danford said we wouldn't need to come back for another six months! I told him I wasn't sure I could make it that long (haha) so we are going back in March right before he turns one.

The blood draw for genetic testing was probably the worst part of the day- Blaise hated it! It's so terrible watching your child get blood drawn. I'd give him twenty shots over having to do that again! We will find out the results in about two weeks.

Blaise also got his second flu shot and first synagis/rsv shot yesterday at the pediatrician. We are so ready to celebrate this Christmas season!

Thanksgiving and Upcomming Appointment

We have so much to give thanks for this year. It's pretty easy to understand how overwhelmingly thankful our families are for the blessings 2012 brought us. I'm thankful for EACH and EVERY thing that has happened in the last year. I often don't feel worthy of having so many wonderful blessings in my life! Blaise brings us unexplainable joy every single day. Our lives have completely changed. Of course, for any new parent their life greatly changes. However, it's hard to describe or even explain how your life changes when you have a child with a chronic health issue. We will never be the same. In good ways, and also in sad ways.

We are so thankful for our families. They've cried with us, laughed with us, supported us and dropped everything in their lives to be by our sides and do whatever it takes. Mothers who've quit jobs to babysit full time, sisters who've rearranged bachelorette party's due to upcoming surgeries, parents and aunts and uncles that have sat for hours on end and babysat for us in the hospital- this is just where the list begins. They continue to drop everything to help where needed, and understand and help us to keep Blaise away from the public.

Our friends- who've put up with us and stayed by our side as we've "disappeared" this past year. They continue to make us feel involved even though we've had to cancel on more than one time and haven't kept up on phone calls and keeping in touch. Your prayers for Blaise and our family have sustained us.

Our communities and all friends and acquaintances who've prayed non-stop. We can only hope that you feel the same sense of a miracle right before your eyes through Blaise. We know he's taught so many so much, and hopefully you hug your own child tighter, say I love you more and have a deeper relationship with God because of him.

Our employeers/ coworkers. Thanks for picking up the slack, putting up with our lack of schedules and for your constant support. Words can't thank enough.
I've often wondered how to say thank you to Dr. Hammel and the other doctors and nurses who've we come in contact with in the past year. Our ultrasound tech who immediately picked up on his disorder. Dr. Danford- our cardiologist who had to "gently" inform of us the most heartbreaking news we've experienced in this lifetime- but also has gotten to share in each joy and miracle along the way. Our nurses who've provided better care than I could dream of myself and also were rocks for Mike and I during some of the hardest times.  Dr. Hammel- our heart surgeon whose hands have done God's work and saved our baby's life twice. How do you ever go about thanking someone like this? I'm hoping just the joy and smile on all of our faces when we see him explains it enough. It's almost like he feels part of the family.

We are thankful for the new relationships we've made. Some of the most incredible people dealing with similar health complications with their children. Some who've lost children, some who share tips and tidbits and those who are there no matter what.

We go back this Friday, November 30th for our cardiologist appointment. Blaise is scheduled for a ECHO, EKG, all other regular testings and a genetic blood draw. I swear these appointments get harder each time. This is the first time since August that they will be looking at his newly structured heart. As before, we are asking all our prayer warriors to send along extra prayers this week for great news on Friday. I'll update as soon as I can after the appointment. We hope that Blaise handles everything well. It will be hard to watch his scream as blood is drawn, and hold him down for over 20 minutes during the ECHO. Mike and I are going together, so hopefully the two of us can handle it all.

What's Blaise been up to since the last update? LOTS! He has spent a lot of time and Grandma and Grandpa Sudmann's. He went to visit his cousins and aunt and uncle in Aberdeen for Cooper's 2nd birthday. This was Blaise's first long road trip, as its about 6 hours one way. We left late enough that he slept the whole way there, except for about a 20 minute scream session, and I think our passenger Uncle Tyler was about ready to jump ship. He also did really well on the way home. I think Blaise was beyond entertained by his cousins, and may have learned a thing or two- as he now likes to scream as loud as he can throughout the day.

Blaise spent Thanksgiving in Treynor and even got to eat a Turkey Dinner (out of a baby food jar). Aunt Jenna made him a super cute turkey shirt and he looked adorable in it! Great Grandpa Glenn was back- so Blaise got to spent some time with him this weekend. We are very deep in teething at the moment. Blaise has decided he doesn't like sleeping at night and wakes up quite a few times. I'm beginning to think it's teething related. He can't get enough things in his mouth, and he is a drool monster. On Friday night he was super fussy and actually ran a temperature of about 100.6 that evening. Of course, as a heart mom, I immediately got nervous and called the pediatrician to make sure they thought everything was okay. After some tylenol it came down, but his fussiness has continued. Mike hung outdoor lights this weekend on our house. I am SOOOOOOOO excited to celebrate the Christmas season with Blaise! Don't forget the reason for the season!

Here are some fun pictures to enjoy!

Hartwell Family Photos in Aberdeen

 Sound asleep on the floor when I visited Uncle Mitch and Aunt Jenna.

 Anxiously watching the election results with mommy.

 Getting a piggy back ride from daddy!

 Hands up- I'm OUT!

 I was SEVEN months old on the 12th!

 I sit up all the time now!

 Playing with Uncle Adam.

 I don't need Christmas presents- just get me the box!

 Love my daddy!

 Being a good boy on the long car ride up to Aberdeen.

 Man- this is a LONG car ride home!

 I can stand all the time too! Happy Thanksgiving!

 Cutest butterball around!

This teether thing is awesome!