Our Miracle turns One!! (prayers still needed)

Last week was spent celebrating our sweet little Claire. Still hard to believe that we have had her in our life for a year, but what a blessing she has been. My faith has grown and I have been encouraged and humbled to see God provide and care for our little angel.

Here's a few pictures of our princess on her birthday and at her Claire Bear Party...

So glad that we got a chance to celebrate with Miss Claire.....what a year it has been. Now for the yucky part....

We went to the cardiologist for our next check up yesterday and didn't get the news that I had wanted. Claire's oxygen saturation has been in the high 70's and it should be in the 80's the last two appointments. The doctor was concerned that this has not improved and after reviewing the echocardiogram (ultrasound of the heart) they did yesterday they also found that her heart vavle is leaking more. So.....long story short, they are going to do a heart catherization sometime soon. Our cardiologist wants to review her case with the doctor that would be performing the catherization and they will let us know when it will be. A heart catherization is when they put a wire like catheter into her artery and put dye into the artery in order to get good pictures of her heart and circulation. There is some concern that one of her pulmonary arteries ( the vessel of the heart that takes unoxgenated blood to the lungs) could be too narrow and in the catherization they would be able to dilate it if that is the problem. Worst case scenerio she would need another heart surgery to fix her leaking valve. We will have more answers after she has her heart catherization. Most importantly...... WE NEED PRAYER!!!

 I still sit here completely humbled by the prayer they has been sent for our little girl and know God is listening. Please pray that God would heal her and if she needs something fixed it can be done during the catherization and not another surgery. We will keep everyone posted and I want to thank everyone for being on this rollar coaster with us!!

Our little blessing

Laying in bed waiting to feed Claire that stupid midnight bottle after a 12 hour shift at work feeling completely exhausted, and I look over to see the sweetest thing ever.....daddy cuddling Claire in his arms. Cuddled just the way that I love to be cuddled by him.....nestled deep in his big shoulders feeling completely safe and taken care of. I am just over come with love and thankfullness. This has been such a strange journey we have been through with Claire. Lately, I have realized what an anxious heart I have had over the last year, and I cant help but realize how God has done everything to take care of us.........

I wanted to take a few minutes and let everyone know that Claire is doing AWESOME. Even as a nurse I can't help but be amazed at the medical innovations that exist today. Claire is growing, slowly meeting her milestones, and enjoying life as a sweet little baby girl. She is slowly getting weened off her medicines and we don't have to go to see Dr Wheeler (claire's cardiologist) in 6 weeks.

Thanks again for the continued prayer. The only way we have made it through all this is because of all our prayer warriors. You know who you are........and thank you really isn't enough.

Returning home from the 2nd tour of duty

We are proud to report that we have returned home from our 2nd tour of duty at nationwide childrens hospital. Mandi called about 12:00 to let me know the news that Dr Wheller was going to be sending us home tonight. We had a few phone calls to make as the insurance was trying to deny one of claires medicines but the nurses and faculty at childrens took care of the problem. We did have to come home with oxygen for Claire at night, an assortment of oral medications and a shot that must be given twice per day. Nonetheless, we are so excited to be at home.... All of us.

sweet moments

Today being saturday things are in "coast" mode as Josh said earlier today. Which means a whole lot less doctors and  whole lot less testing etc. So, we enjoyed our time with little Claire bear. Josh sent me away last night to sleep at home with Colton and when I got to the hospital this am I looked in her crib and got the biggest smile. Ahhhh.....felt so good to see that sweet little smile, and there were many more today. Of course most of them were directed to her daddy of course, but still so wonderful to see. As Colton was leaving to go home with mimi and pa for the night Josh asked him if he wanted to see Claire's boo boo. I lifted up her shirt to show him her little bandage and with the most sincere tender voice he said "I sorry sissy." and gave her a big kiss on the cheek. As rotten and ornery as he can be he does have such a kind sweet heart and I know he is going to be her biggest protector.

"the little things"

Claire is recovering like a trooper. She is doing well after surgery not requiring pain meds other than scheduled motrin and she is becoming less swollen each day. Now we have moved on to the "little things". From having the the oxygen in her nose for so many days she is completely congested. Which means lots of saline drops in her nose and patting her back in order to loosen up the mucous. She is significantly better than yesterday but it's still a struggle. So since the little sweetheart's nose is stuffed up she has a hard time eating. Which as many of you know has been our biggest battle with her since she was born. THE BATTLE OVER THE BOTTLE. (Strange i know since she is half frame and martin.......and we all love to eat :)) These "little things" seem so ridiculous in the whole scheme of her little life. What a miracle this little sweetheart has been. God continues to whisper in my ear "just trust me." What great peace to know that our God is so much bigger than all of this and he also cares about all the "little things".

Moving on up..

We are glad to announce that Claire has been moved up to 5C step down unit. We have our own private room with a shower. We were a little anxious this morning as her Oxygen Saturation numbers fluctuated up and down. Dr. Yates stopped by and reassured us that this fluctuation was normal after the bidirectional Glenn. The crew at CICU finished drawing some labs around 11:00 and got the transfer orders by 12:00. We got up to the cardiac step down floor about 12:45 / 1:00ish. It is good to see the little girl progressing.
We got a little surprise when Deb Confer stopped by to visit. We laughed that last time Claire was in the hospital, Everett stopped by. Wonder which Confer will be here in a couple of years for her 3rd surgery?

Later Danny, Karen, and Christy stopped by... and you guessed it, little Colton came by too.  Colton first ran up to his sister and did what every big brother would do... he yelled in her face. We all had to laugh.

Well, it is getting late and I might try to add some more tomorrow.

We appreciate your thoughts and prayers.

Let the tubes come out.

We spent last night in a sleep room at the hospital. Both Mandi and I were pretty exhausted and happy to have a dark room to lay our heads. We almost always sleep with a fan. Last night we obviously did not have our precious fan but let me tell you that it did not matter. We set the alarm clock, although I knew I would not need its assistance. I woke up in the morning with Claire on my mind. We quickly got our things together and headed to see how Claire was doing. The first news that we heard was that somehow Claire had pulled her PICC line out during the night. We knew this was going to be pretty bad since she has had such a hard time getting IVs.


How many sticks
Does a Claire Bear need
To get a line for blood?
That seemed to be the question. Luckily, early in the morning, the Radiology Team came up and put a new PICC line back in. Success. If only this was the last stick she was to receive today.

The day persisted with Claire slowing getting tubes removed. First was the Aertial Line, then the pacer wires, then the Aortic Line, then the Chest tube. She seemed to be doing fairly well during this process. Then we found out that the team wanted to try and get a peripheral IV in again. Obviously, this was alarming for us as she has had such trouble with these sticks. I counted... 3 sticks in each foot, 4-5 sticks per arm, and one in the head. I mean come on... 17 sticks for a little one plus a PICC line not once, but twice. That is a lot of bruising over the next month just from IVs. The IV team was not successful so they Doctors will need to monitor her reaction to the heparin drip in another fashion. I guess this is where Mandi's experience as a Cardiac Nurse (for adults) came in handy as she suggested to the Nurse Practitioner how they monitor the heparin drip at Riverside on 3 Heart. The team decided to use that technique given the circumstances. (By the way, if you want the details, email her because I didn't get the whole flush the lines for 5 mins thing).
Claire has continued to have a tougher night as they continue to ween her off of the pain medication. Now that she is becoming more awake, she really does not like the oxygen in her nose. I found that to be a very fast way to make her mad when I accidently tried to fix it. Sorry sis.
We were happy to be able to feed sis bear some pedialyte and then some milk. She ate it right down. We were happy to see this as there is no guarantee that little heart babies will continue to enjoy food from one surgery to the next.

Mandi and I are hopeful that tonight goes well. Maybe, just maybe we can get out of the Cardiac ICU and onto a step down floor. There is just something about Intensive Care Unit that is scary.
We appreciate your thoughts and prayers.