Friday, November 30, 2012

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!

Sunday, November 25, 2012

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!

Monday, November 5, 2012

Happy Fall Ya'll

Well, I'm sure you are all waiting on pins and needles for the next Blaise Blog update! Trust me, if I was able to sit down at the computer more often, I would definitely get some more posts made. This little boy keeps me hopping, and I love it!

Blaise was a cow for Halloween. He seemed to very much enjoy it! On the Saturday before Halloween, we went to my parents in Treynor so they could see him in all of his attire. We got to go to great Aunt Gail's house on Saturday night to celebrate Great Grandpa Herb's birthday. 

On Halloween, Blaise, Grandma Peg and I went to the Trick or Treat event on main street in Oakland. Blaise got to stroll along with about 300 other kiddos and gather candy. (Well, we did more strolling, and not very much candy-gathering but it was lots of fun!) We visited a few more friends too. Overall, he seemed to more or less looking at all of the people and didn't mind his costume too much. He did scream for a few minutes the first time, and I jokingly sent a text picture to Grandpa Stew asking if he and his other vet friends could cure this "mad cow". 

His favorite thing is to grab his toes and feet these days. He always has them in his hands, up in the air, near his mouth. He really does learn something new everyday. I think he is trying to talk "babble" a little more again lately.

He's flow-blown eating just about any type of baby food that is made. He thoroughly enjoys them all, and everyone who gets to change is diapers thoroughly  doesn't! HA! He drinks water from a sippy cup now too.

This past weekend we took our first overnight visit to Aunt Jenna and Uncle Mitch's in Des Moines. They bought their house the same time Blaise was born, and I had never been to see it. I hadn't actually been to Des Moines in an entire year! As I was driving down the insterstate with my parents, I was commenting how besides going to Omaha or Treynor, I hadn't been ANYWHERE else in the last six months. Wow. Time has been flying, and I guess we are somewhat in our "own little world" but enjoying every minute of it!

Blaise did super awesome on the trip. He is the center of attention anywhere we go- imagine that! Grandpa Craig babysat at Jenna's all day on Saturday while my mom, sister and I did our annual Christmas shopping trip to the Williamsburg outlets. The two of them went on lots of walks, and enjoyed looking out Jenna's big windows into her backyard. Grandpa Craig commented he was surprised that we could shop for almost 10 hours straight. We all had a great time!

Last Sunday Mike was home long enough that he was able to join us to get some family pictures taken in Omaha. I'm anxious to see how the turned out since it's the first time we've had pictures of the three of us.

Blaise is also starting to lift his rear off the floor when he is on his stomach. I honestly think we might have a crawler by Christmas!

We got official word that he was approved by insurance for the Synagis/ RSV shots! YEA!!