Nose Cannula - 1, Tovin - 0

Tovin has been fighting with his nose cannula all morning.  He doesn't like it in his nose, I'm guessing it's itchy or just irritating!  The sweet nurse has given him many chances to stop pulling it out, but she had to resort to this...

His arms are in "straight jackets" to keep him from getting to that cannula.  Tovin was not impressed so he decided to take a nap to forget about it!  The team of doctors decided to give Tovin some blood to help increase his hemoglobin.  Hopefully this will help with his lactate level.

I was able to leave the hospital this morning to go back to Grandma's house...I forgot my lotion there!  I decided to stop at my favorite bagel shop, Brueggers Bagels, on Lake Street to have a breakfast bagel.    The Lake Street Brueggers has the nicest staff that works there, they are always so helpful and full of laughter.  They were all concerned about Tovin, and said that they would say some prayers for him.  It's so amazing how people have banded together for our little tiger, a beautiful boy that they haven't even met!

On a side note...I had to parallel park on James Street...I'm not very good at parallel parking in the first place, typically I end up on the curb or 3 feet away from the curb...I had a pit in my stomach, kind of like when you see a cop car coming over a hill and you were going a little too fast, because there was a car behind me waiting for me to work my magic.  Let's just say my parking job wasn't pretty, but I didn't hit anything, and I was not too far from the curb.  I would call it a huge success for me!

Good Morning!

At 11:00 last night Tovin was able to be freed from his breathing tubes.  He was having a difficult time waking up enough to stay off the breathing machine until then.  He would open his eyes for about 10 seconds, grip onto our fingers and then fall back to sleep.  He has been really laid back and relaxed here; behavior wise, he's been touted as a perfect patient!  When pulling the breathing tubes last night both nurses said that Tovin was the first 3-year old that they didn't have to wrestle with while doing this uncomfortable task.  As other nurses on the floor walked past, more then one stopped by asking "his" nurses how they got to be so lucky!

He coughed a little, but other than that he just laid back and let them do their magic!  If they had an award for the best behaved 3-year old, they said Tovin would have the highest honor's either of them had ever given.  At that point, Jason said, "Tovin, did you hear that, I'll just have remember that when you're like 15...that there was a time when you were well behaved!"

The nurse this morning said that Tovin did really well last night!  He had a few bumps of pain medicine, but has tolerated the pain quite well.  He is one tough cookie...I would be in rough shape if I had my chest cut open.  Tovin has had the best nurses!  Ms. Brittney and Ms. Kayla thank you for being so wonderful to our little man!

This morning his lactate level is higher than they want it.  When the Dr.'s did morning rounds they talked about a few reasons why this might be, the only two reasons I understood were that his body is trying to get use to his new circulatory system, and that his hemoglobin level is at 17, it had been running really high and should be around 20.5, so his body is having to adjust.

"I'm awake! I've already had my lips greased up by mom, and scammed some water filled sponge sticks from the nurse!  I would love a glass of flavored water and some Nanchang Styled Noodles, but they say I can't have anything to eat or drink!  Also, this thing in my nose is driving me bananas!  Wish someone would take it out...peas (please)!"

He is back to sleep, just chilling.  We are amazed at this whole process and how well Tovin is doing.  What a fighter!

Thank you all for your prayers; God is listening and has provided guidance and support for Tovin, us, and his medical team!  Tov - indeed.  Please keep praying for everything to continue this same path today and for the days to come.

Jen and Jason.

I'm No Longer Purplicious, I'm Pinkalicious!

If Tovin could talk, we think that he would say, "Addison will be so impressed with me!  I'm now Pinkalicious just like one of her favorite books, but my name is not Peter, and I didn't eat too many pink cupcakes, and no I don't want to be Pinkerella next time we play Sissy!"

"I have a new and improve pulmonary artery system from the heart, complements to Dr. Overman.  Here are some new pictures of me...I look all hooked up, but the doctor said I would be getting rid of some of them tonight when they wake me up.  Watch out mom and dad!"

"Do you see how different I look?  Mom and dad think that I'm handsome!"

"Check out these next set of pictures!  This is me before my new PA system.  Look at my hands, and though the picture doesn't show it real well, my feet were about the same shade of purple as my hands!"

"This is me after my new PA system!"

"If you haven't noticed there is a difference in color!"

The nice nurse just put me on my back!  

Meeting with the Miracle Worker

Dr. Overman (the surgeon) just met with us.  He said everything went well.  They were not able to "marry" the two pulmonary arteries together, and had to use a Gortex tube to connect them, but he had told us this morning this was a possibility.  Tovin's right side artery was good and very plump.  His left side was tiny and semi curved, whatever that means.  Anyway, there was no way to connect the two without using a tube because of the size difference and the distance between them.  After they stitched them together using the tube they put the shunt into his heart, in place of a pulmonary valve, then joined that with the pulmonary artery tube they used, to make a "T" from the heart into the pulmonary arteries.

That's the version two Special Education teachers heard of what happened to Tovin today, the lay man's version anyway.  I'm sure if you have any sort of medical background you're shaking your head!  Bear with us...we just know that whatever God has in store for our sweet little boy, he will be better prepared for it now that this first surgery has been successful!

Tovin's oxygen stats have doubled!  He is now running in the 80's...not necessary perfect, but perfect enough and perfect for us!  His color and growth will improve greatly!  Dr. Overman stated that he will still be a little "blue" and also become out of breath but not as bad as before.  He said that he anticipates that within a year or so Tovin will be ready for the second, more involved surgery to completely reconstruct his heart.  A plan for the method they will use, and what that reconstruction will all consist of has been discussed by the doctors.  This plan will evolve and change as needed, based on how Tovin does with his recovery from this first surgery.

It's a God Thing!

Surgery is done and Tovin is doing well!  His heart is beating on it's own! They are closing his chest up as I type.

Tovin is amazing, he is nothing short of unbelievable!  It's been one miracle after another!  I can't wait to see his sweet face.

We will meet with the surgeon and then I'll post more!

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.  Romans 15:13

Thank you to everyone!

Dance Recital Weekend!

We had a wonderful dance recital weekend!  It all started Friday afternoon with setting up the stage and placing the chairs on the gym floor.  Miss. Vicki and I pray that someday Tracy will have an auditorium for the girls to dance in instead of the high school gymnasium!

Addison found some of her favorite girls hanging around the gym and was entertained while we were busy at work.  Thanks ladies for being such great role models for Addison and Elizabeth...they both love all of you!

Addison found a gym class Frisbee behind the stage curtain that she thought for sure was a lost treasure.  She found so many uses for it, but her favorite use was to balance it on her head like on Barbie Princess Charm School.  She thought she was going to turn into Blair Willows, or to be more exact, Princess Sophia of Gardania, if she could walk with it on her head while holding a Nerf football!  It kept her busy!

Saturday morning was dress rehearsal.  It wasn't the best dress rehearsal we have every had, but we felt it went well considering all the snow days, and the missed in-studio rehearsal last Monday.  This spring has been crazy with weather cancellations.  However, by the time dress rehearsal was done, Miss. Vicki and I felt confident that the girls would put on a great recital!  In the past when we've experience a difficult dress rehearsal it has lead to a great recital!

Sunday morning we went to church and Sunday school.  Addison then went to her hair appointment!  As you all know I really am bad at doing my own hair, so I was not going to tackle Addison's "recital" hair...I'll leave it to the hair professionals!  Addison went to Mrs. Lori's house at 11:00 with straight hair and she left one hour later with a head full of beautiful curls!  

 

The bibbidi-bobbidi-boo moment...I love the look on her face!

Thank you so much Miss. Lori for helping me with Addison!  She loves coming to your house to get pampered!  You do such a great job!

Right after Addison's hair appointment we went to the high school to help with flowers and last minute music and stage issues.  Addison had her own special place to hang her costumes. (I was smart this year and brought Command Hooks!)  I asked her nicely to not touch them so they would stayed wrinkle free!  

I walked back into the dressing room and this is what I found.  Addison holding herself up while coloring.  Of course I asked her what she was doing, she stated really plainly, "Well Mom, you said that I shouldn't get my dress wrinkly, so I decided to color like this."  I didn't know what to say after that...since there was a table right in front of her.  I'll call it "hair spray" brain!

It finally was time to get dressed for Addison's first dance.  Addison loves this dress!  Thank you Miss. Janel for the great photos!

I was not able to get pictures of Addison dancing, but I did get this great photo of her after the dance was done while her class was leaving the stage!  Our little girl is brimming with pure delight!

It was then time to get changed into her tumbling costume and wait for her class to be called for their tumbling routine.  She had a fun time playing with her friends.  Apparently she forgot about not getting her dress wrinkled!

    

Below, Addison is on the far right.  This was such a fun routine to watch...the girls sort of followed what they were taught to do, but really they put their own creative spin on it!  I loved it!

This year's recital was one of my favorite of all times.  The dancers/tumblers at the studio this year are amazing young people!  Our graduating seniors will be missed very much!  We wish them the best!

Even though recital is done we still had to clean up, so we put the three kids (Addison and her cousins) to work!  They received the most unwanted job there is!  Pulling the marking numbers and letters off the floor!

Thanks you three for getting the job done in record time!

It looks like Addison is getting rid of some extra adrenaline or is showing off her beautiful "sparkles"!  As you can see "Sister" Brianna brings out the best in her!  

This was a really quick glimpse of our crazy weekend!  I think Tovin was excited to get back to the house on Sunday night!

Back to what he enjoys the most...sitting on the kitchen counter listening to "We Are The Dinosaurs" and "The Goldfish".  Just ask Jason about those songs!

It's 11:00 on Monday...still no word on Tovin.  I'm thinking no word is good!  Jason just left to bring us back a Subway...Thanks Lacey for the tasty idea of mayo and vinegar!  

Love to all!

Surgery Day

We arrived at Children's this morning at 6:30 so Tovin could get prepped for surgery, and for us to go through any questions we had and were giving more information about what was going to happen today!  We have been very well informed throughout this whole process, and we are very impressed with the Children's team!

Tovin was pretty cooperative this morning, but he was so hungry!  We went out to eat last night, but he didn't want to eat very much!  I think when my sizzling fajita plate came to the table he was a little afraid of it, so he wasn't interested in his hotdog and rice - I guess I wouldn't be either - hotdog and rice!?  We felt so bad for him as he was constantly pointing to his mouth and we weren't able to do anything to ease his hunger.  Notice the sad face on our little guy - breaks my heart!

After Tovin was scrubbed down the anaesthetist and surgeon came in to talk with us.  They discussed what was going to happen today and also what we should expect when Tovin gets out of surgery.  They stated that his surgery should be about 3 hours, but we most likely won't see him until 3:00 this afternoon.  We will be notified every step of the way!

At about 7:45 this morning he was given a relaxer - the same one he was given when he had his heart catheterization.  Tovin becomes silly from this medicine, it makes him full of giggles and very unstable.  The nurse had an African animal channel on for Tovin to watch, a lion was on the TV; Tovin lifted up his arms and roared like a lion very loud and then just looked at us and giggled.  The team came to take him back to the surgery room, we said our goodbye and watched him be carried through the doors.

One of the nurses came to let us know that Tovin was doing well and is making fast friends with them.  He's letting them know who is boss by saying "hey - hey" kind of like leave me along - to them while they were working on him.

We will continue to post updates...I have some dance pictures from this weekend to share as well!

We just were informed that Tovin is doing well!  They started the procedure at 9:50 this morning!  Thanks for all the prayers and good wishes!