Michael's Many Moments: January 2013

...that I don't want to forget -
*She made a comment about the sun, so I said, "Do you know that God made the sun?" and she said, "Yes! And he made the twinkly stars & the shiny moon!!"
*When something is loud she still covers her ears & says, "That scares my ears!"
*I guess I've told her that I have to "get some stuff done" a lot because now she will say, "Momm-EEE? When you get done with all your stuff, will you do this puzzle with me?" (or play with me, etc.)
*She sings ALL the time. We will definitely be putting her in some music classes at some point. She gets most excited about music at school - yesterday when I picked her up at preschool, I asked her what she learned today. She said, "I learned music!!"
*My favorite "Kate lyrics" right now to Row, Row, Row Your Boat - "Mary, mary, mary, mary jumps into a stream." instead of "Merrily, merrily, merrily, merrily, life is but a dream." So cute :-)

What a whirlwind the month of December was! We arrived in Dallas on Wed. the 5th, stayed at a hotel with my mom & arrived early to Dallas Children's the next morning, fully anticipating that M's ASD would be fixed that day in the cath lab & we would be on our way back home that weekend. We met the anesthesiologist, the surgical team, and finally Dr. Demas, M's cardiologist. Her last words before taking M into the cath lab were, "Hopefully I won't see you!" which would mean that she was scrubbing in to perform the cath to fix his ASD. We went to breakfast (Andy's parents' pastor came up to the hospital to sit with us & bought us all breakfast - so generous!) We returned to the waiting room & sat for a few minutes before turning to see Dr. Demas walking towards us with "the look" you don't want to see doctors have. I'll never forget when Andy put his hand on mine & said, "Here she comes." She said she could try to close the hole with the cath, but that she wouldn't be able to sleep that night, she would be so worried that the device would slip out. She said she wouldn't try it on her own children & that open heart surgery, although scary & a much more invasive, was the best option. His hole looked to be 15mm on the echo, but when they did the TEE, they discovered his hole to be 19mm & with only 2mm of tissue between the edge of the hole & the back of the heart. They needed the tissue surrounding the hole to be at least 5mm. Amazing. So we spent the remainder of the day doing paperwork, xrays & blood work to prep for the surgery, which was scheduled for noon the following day...it was a LONG day (& of course I had this crazy headache that would not go away). And Michael was so out of it from the anesthesia he received for the TEE, that Andy had to carry him to get the xrays, blood work, etc. After we left the hospital we enjoyed dinner with our family & tried to keep the atmosphere light, though this was so hard for us, knowing what the next day held.

Friday morning we arrived at 10:30 - more waiting...thankful for the Wii that kept Michael distracted!! And the iphones/ipads that kept all the adults distracted :) It was all very surreal, knowing that our boy was about to go into major surgery that included a by-pass machine, a possible blood transfusion & just so many unknowns. We were SO impressed with Dallas Children's - every single staff person we dealt with was so kind to us & so good to Michael. We had such peace that we were in the right place. Even Michael's surgeon (Dr. G) ended up being the same surgeon who just weeks prior had done the heart transplant in a 2 year old boy whose parents went to college with Andy. That gave us so much confidence & we thank God for being so personal to attend to details like that.

The next few hours were just...looong, but also fast & blurry in a weird way. We went down to eat again & I actually remember what I had. Then we went to a special family waiting room that they reserved for us. Of course all of our amazing family was there, along with many sweet friends who stopped by to visit, bring food...etc. We were so blessed by everyone's generosity. The nurses called us in the waiting room every hour to let us know how it was going - every time the phone rang, the room seemed to stop & all I could hear was Andy saying, "Yes, ok...ok...good...thank you." The first call was an hour after M was wheeled away (SO HARD to watch him go) - he was hooked up, asleep & they were getting started. The second call was another hour later to say they had him hooked up to the by-pass machine. I just prayed & kept thinking over & over, "When I am afraid, I will trust you." Psalm 56:3. I also had my sweet friends, Candice & Carrie, to provide good conversation & keep me distracted. They are like sisters to me, so it was wonderful & comforting to have them there.

Before we knew it, the phone rang again - M was off the by-pass, his heart was pumping on its own again & they were finishing everything up. Andy & I were taken to the ICU waiting room so we would be right there when they wheeled M down the hall to his ICU room. I'll never forget standing in that hallway waiting for him to be pushed down the hall. He looked so small on that big hospital bed, but considering what he had just been through, he looked great. Dr. G & the anesthesiologist said that M had them rolling right before he fell asleep & that he made sure everyone in the room knew he wanted a taxi for Christmas! (So of course we got him one!!)

My facebook statuses from that day --

**I hate to clog the newsfeed today but this is the easiest way to keep everyone updated. They just took Michael back. We will get our first update in about an hour. Thank you so much for your prayers :)

**We just got our first update - he is all hooked up & they are starting now. Right before they put him to sleep he told them he wants a taxi car for Christmas :-)

**2nd update - Michael is now on the bypass machine & Dr. G has begun working on his heart. They said he is doing great.

**Update 3 - Michael is off the bypass machine (praise the Lord!!) & they are finishing up. They will be taking us to the ICU waiting room soon.

**Update 4 :) - We have so much to praise God for! We just saw Michael as they were taking him to his ICU room. They said his surgery went beautifully - no blood transfusions were needed, they were able to use his own tissue to close the hole & he was on the bypass machine for less than an hr. Praising God & thank you for all your prayers!!!

**One last update for today -Michael is in ICU & doing well. He's opened his eyes a few times & answered some questions by shaking his head :) He still has the breathing tube though & they won't take it out until he is really awake. And then he won't be able to eat or drink for 6 more hours :( He has been such a trooper! Thanks again for all the love & prayers!

They took M to his room & we met with our surgeon in a consult room. Basically, God answered ALL of our prayers - everything that could have gone wrong, DIDN'T. Several specific things we prayed about / God answered - M was on the by-pass machine for less than an hour & only one time...M didn't have to have a blood transfusion...Dr. G was able to close the hole with M's own tissue...the anticipated 4 hour surgery ended up being closer to 3 1/2 hours...M was only in ICU 1 night & in the hospital for only 4 days...M had no complications, infections, etc...M's attitude & the way he handled everything was just incredible. He was such a strong, tough little guy & he hardly ever complained. He amazed us with how compliant he was to each & every nurse & their demands/requests.

Had our pediatrician not heard M's murmur, diligently stuck to his guns in sending us to pedi cardiology (2x as a baby & then last spring) & been a master of "better safe than sorry," our little guy could have easily been a "he died from an enlarged heart" case in his teens. His heart was already 3 to 4x larger than it should have been - at age five!!

It is so awesome to now be able to say, "Our son HAD a heart defect!"

Lots of pictures - not in order -- I love how Bear is in almost every picture (He renamed him Dr. Bear while at the hospital :)

In ICU Friday afternoon, an hour after surgery

In ICU Saturday morning, with my dad (Po)

Waiting for the staff to take Michael away for surgery - we waited in this room for over 2 hours :(

Saturday morning with Mommom & Papa George

About to get his chest tubes out - my mom & I couldn't watch this. They told us he would probably cry because it hurts pretty bad. He hardly cried at all...so strong.

Sweet boy - sitting in a chair for the first time & not very happy about it :(

Michael getting some encouragement from Andy's dad, Papa.

Watching Cars while wearing his Lightening McQueen pj's :)

24 hours after surgery - leaving ICU & headed for the 8th floor - YaY!

On Saturday afternoon it was so special to have 2 couples from our life group drive down to Dallas to be with us!!

Getting ready to leave ICU

Sunday - Mommom reading Michael all of his notes, cards & drawings from friends & family

Later Sunday - "I have a healthy heart!" It was SO wonderful to see our boy so happy!

Our sweet Oklahoma friends playing with Michael - he loved having them visit.

Erin & Pati, my dear life group friends.

Kate came to visit on Sunday afternoon - they loved being reunited. I think Kate was kind of worried about Michael, in her own little 3 yr old way.

Candice & Carrie came back up to visit on Sunday too!

Michael with Candice & Maddie

Carrie & Luke with me & Michael

On Sunday evening he felt like building his new dirt bike Lego kit :)

He asked me to take a "serious picture with his IV" :)

Right before surgery on Friday - dressed in his awesome Super Michael cape that Matt & Manda gave him.

Candice brought a cute Santa craft for all the kids to do

Monday morning - his last Echo before leaving the hospital.

Monday afternoon - LEAVING!! He wanted to walk out & not have a wheel chair! Hallelujah!

God is good! We also can't say thank you enough to all of our family - They provided prayers, strength & support, meals, hotel rooms, childcare for Kate & David...we are so blessed & we love you.

Update as of yesterday (1/10/13) - My facebook status --

"I will sing the Lord's praise, for HE has been good to me." Psalm 13:6 - We got a wonderful report on Michael today at his appointment! All the fluid around his heart & lungs is gone, so we are done with Lasix (fluid drug), his heart "looks perfect" & he has even grown already! He has gained 1 pound & grown 1/2 an inch since Dec 17th! SO thankful for this journey the Lord has taken us on & for HIS FAITHFULNESS that is beyond my understanding! Thank you Lord for healing our sweet boy!