We're Home!

Wanted to send a quick note to let everyone know that we got to go home today.  Claire is walking around the living room, playing with Colton and having a good time.

We did get to talk with the Occupational Therapist before we left today and she gave us some good tricks to continue to help Claire's left arm continue to progress.  She is doing so much better with each day.  As you well know, Amanda and I will push that little girl with some intense home therapy.  In addition, we will schedule some OT with the Childrens close to home.

We got to talk with the Neurologist after the MRI.  Claire did have some spots on both sides of her brain from watershed stroke.  The majority of the spots were on the right side which would be why she has lost some function in her left arm.  They mentioned that they are not concerned with a loss of function in her eye but would like to continue to follow up in the stroke clinic at Nationwide over the next month.  The area of her brain effected could also judgement and impulsivity.  Ofcourse since Claire is so young, we cannot assess that at this time and we will never know the full impact because we will just know Claire for Claire.  I did joke with Amanda and tell her that Claire and her are no longer allowed to go shopping together because Claire has a deficiency in impulsivity.  That is a bad combination for a shopper.  Thank you all for your continued prayers.

Claire will go back to have an X-Ray next week to be sure that the small amount of water in her lung continues to decrease.

Love you all

Bro bro

Can you tell what is missing from the picture??? That is right her oxygen!!! You can tell Claire is feeling better and was excited to play in the playroom with big brother. She was getting frustrated with us that we wouldn't let her walk (poor princess has iv's in both feet). One of the sweetest moments happened in the playroom between big brother and miss Claire bear........they were playing with blocks and Claire leaned over and gave bro bro a big ol two armed hug. Melted this mama's heart. She lifted up both arms and squeezed him tight! Needless to say her left arm is improving each day. The physical therapist stopped by and was very impressed with our therapy we had been doing, and Claire loved her mailbox toy and was sad to see her leave. She said that Claire is doing great and that she will need occupational therapy after she goes home. Kids are amazing......so resilient and still growing. The attending neurologist and the fellow we saw the other day stopped by to see Claire yesterday and Claire charmed the neurologist and even showed off by waving her left arm. The neurologist was completely smitten with sis (who can blame him). So now we are waiting in the dreaded surgery waiting room while Claire has her MRI. Hopefully we will know the extent of her stroke tonight once the radiologist reads the films. She's our miracle and God continues to amaze us.

Tough news

The results from the CT scan indicate that Claire has had a small stroke, probably during surgery. The cardiologists shared the initial results and then we got to speak with a fellow in neurology. She will have a MRI on Monday to see the exact damage. Luckily it only affects her left arm as far as we can tell. The area of the brain affected could also impact her left eye but we will have to see what the results show from the MRI. They did mention this is not the area that impacts language & learning. We will see therapy (ot and pt) on monday too.

She is smiling and laughing at me even though we didn't get the best news today.

Here is a picture of Claire eating her popsicle in the playroom on C5. We love that girl.

Becoming More Active

Day 6 in the step down unit on C5, Claire has started to become a little more active. We have enjoyed seeing her play and smile and the like. She has been chuckling at all kinds of things and starting to get her personality back.

We do have one thing that we want to share and ask for your prayers. As Claire has become more active, we have noticed that she has limited movement of her left arm. I kind of had flash backs to the first time we were in the hospital when it seemed as soon as we would see some progress, there was another wave of information that crashed down on our nerves.

Yesterday we found that her pleural infusion appeared to decrease in her lungs. We were happy to see that this main response to the Fontan was starting to correct itself as her body becomes used to having all of her deoxygenated blood go to her lungs first, then to her heart. We worked really hard to challenge her lungs by making Sssss sounds and blowing bubbles all the while having good laughs. As I am sure most of you know, nurses regularly flush IVs and we found that the IV in her left arm had run its course and so it was removed. Up until that point, she was mainly using her right arm and we thought it was due to the fact that she still had the splinted. Amanda had made a comment a few days ago about her limited movement in her left arm but we wrote it off due to the IV and splint. With time, we became more concerned and eventually talked with the Doctors. Nurse Amanda did her Nero Assessment and we were waiting in a state of uncertainty. As soon as you think that you turn the corner, something else seems to pop up. The evening doctor said it could be due to the multiple days with the IV / Splint and mentioned we would look at it in the morning.

This morning, Amanda talked with the doctors during their rounds and they agreed that it is probably due to the multiple days of IV / splint but thought it would be best to due a CT Scan just to make sure. We do not have the results yet but we are praying that all the Nervous system is good.

We appreciate your prayers and love you all.

Day 5: Chillin on C5

Claire is sleeping on the couch next to me after we have spent most of the morning cuddling (felt good....haven't been able to do that since sunday night). She is doing better each day and spent several hours sitting up yesterday playing with her toys, requesting ice (we knew it was only a matter of time), and eating some lunch and dinner. She still has some fluid in her lungs and they are doing their best to try to avoid putting another chest tube in but time will tell. She still is requiring a little baby dose of oxygen to keep her oxygen levels up, and for some reason this has been one of her biggest vices since birth. So, hopefully we can ditch the oxygen soon.

helping daddy check email

visiting with family (she's the peanut on the couch)

eating a "nanana" with brother

Day 2

Yesterday was a fairly uneventful day - which is good when you are the CTICU. Claire got a lot of sleep and got a lot of fluid removed which is a good thing. Our one concern was watching her temperature hover 100. Obviously we the parents are a little concerned about our asplenic little one with a temp but all the Doctors continue to say they are not that concerned about it as it is normal post operation. We continue to try to get her to eat more.

Claire did wake up enough at times to talk to us. She would lift her IV filled arm to the sky and point to the painted ceiling tile that has a fish and say "fishy" She also talked about her doggie and I got her to laugh a little by playing peak-a-boo. It was good to have some interaction with her.

We got to share a meal with my parents at the hospital and spend some time with Colton. We appreciate all of the support we have received from our families and I know that Colton is living it up right now when he does not have to be with boring mommy and daddy all the time.

Our hope is to be in the step down unit tomorrow. C5 here we come... hopefully.

3rd Tour of Duty - Day One

Amanda, Claire and I are now hanging out in the CICU. Claire has had some fits when she is feeling the pain or when she is hungry. Its not that great to have a kid swinging around in a bed with an IV in each extremity along with a chest tube and other wires all over the place. The nurses and Amanda have done a good job helping her stay happy.

Lets revisit the events of the day.

Claire, Amanda and I arrived to Children's at a wonderful 6:15 in the morning. As mentioned in a previous post, our friend from Lifepoint Church shared a scripture (Phil 4:4) and prayed with us before we signed in. Much appreciated!

We cruised right through the admission process and got to speak with Dr. Galantowicz. Let me tell you that Dr. G is not only a great physician but you can tell that he is a great man. Very caring, great at what he does, top notch... the kind of guy that knows your name after one introduction. The Columbus area is blessed to have such a great Doctor. Claire was pretty active and visiting a lot of people, and pictures of fish, and basically anyone or anything around. It was good to play with her and swing her around and rough-house a little. Amanda reminded me that it may be a good amount of time before I can do that again without causes her much pain.

Eventually it was time for the drop off. Let me tell you that this is the 4th time we have had to leave our little girl in the hands of someone I didn't know. Let me tell you that this does not get any easier. We said a few more prayers and headed to the waiting room for what was scheduled to be 6 and 1/2 hours. (wow... that's a long time)

We were greeted in the waiting room by Danny, Karen and Chloe. We visited with them for awhile. Eventually, we had more family and friends swing by. My parents came down and brought a crazy big brother - Colton. We were surprised by Ed Beeson of whom we shared some great conversations. Christy also made it down to share in the family moments. We had a wide variety of methods to help pass the time: Computers, Laptops, iPads, iPods, TV, DVD players, Card Games, Board Games, some toy we bought colton - Squinkies (Cars 2), casual conversations like the weather and in depth conversations like living like your dying. The markers of our 6 1/2 hour wait were tagged by intermediate phone messages from our friend Keyona with updates from the operating room. With each update, our spirits were lifted higher and higher. With each update, our doubts were further and further suppressed. With each update, the smiles got bigger and bigger.

In between visits, conversations, and playing with Colton I got a chance to listen to the Daily Audio Bible for October 3rd. What do you think part of the New Testament scripture was for this day? That's right... Phil 4. God works in mysterious ways.

4 Rejoice in the Lord always. I will say it again: Rejoice! 5 Let your gentleness be evident to all. The Lord is near. 6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

These words were alive and active today for me. I believe our family was granted a piece that passes all understanding. God has been good to my family. We are so blessed. I don't know if I can say that we "rejoice" in our sufferings but I know that we have learned to trust God. I mean, that is all we can do right?

Even though we had heard good reports throughout Claire's surgery, I was still a little nervous as Dr. G came to our section in the waiting room. The gravity of that moment was lifted as he quickly shared a smile and news that Claire was doing fabulous. A few of his words will forever ring in my thoughts as we think back to this Third Tour of Duty at Nationwide Children's Hospital. "Her oxygen saturation is at 99%" and her lips, fingers and toes are all pink. I understand that most people would not think twice about these sayings. Thats typical, thats normal, thats the way we were designed to be... well that wasn't our Claire Bear. She had purple toes, white fingers and purplish / blue lips that always got worst when she was cold. Dr. Gs words were transformational for our family. I know it took some wind out of Amanda and I when he shared these because our normal / status quo had been changed. Our girl used to have oxygen saturations that just barely allowed her to run and play with her big brother, allowed her to climb our steps with rest. I look forward to the new status quo with our "normal" family living in a trusting relationship with a "not-so-normal" God.

I would like to finish this long post with a quick snap shot. In Claire's times of discomfort, she has been mumbling "mama" and "ba" Well, we got to give her the first bottle (apple juice) after the surgery after they checked her blood levels. She was so excited that she did all she could do to hold it herself. That little girl is a fighter!

Claire's 3rd tour of duty

The alarm rang early this morning. What is it about waking up in the 4's that is so bad? I guess I can handle 4:50.
We arrived safe and sound at Nationwide in time and were welcomed by our good friend and Children's Minister at Lifepoint Church - Marc Shields. Colton just loves Marc. He shared a scripture from Phil 4:4 and prayed with us as we started this long day.
Claire will be having the last of three heart surgeries that works to reroute all deoxygenated blood from the heart to the lungs. The previous surgery took care of the blood from the upper part of her body. This one will route the blood from the lower body to the pulmonary artery. In addition, Dr. G will try to tighten up her heart value to assist with the negative pressure needed to help blood flow into the lungs to get oxygen before moving to the heart and then providing the needed oxygen to her cells throughout her body.
As always, we appreciate your thoughts and prayers.