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.

2nd tour pics

Follow this link to some 2nd tour of duty pictures:

2nd tour of duty

Today was the start of the second tour of duty at children's hospital for our little Claire bear. We got up at 4:45 in preparation for our short trip to the capital city. Really the morning events followed the normal daily routine with shots of reality coming and going as a variety of ideas came and went. How's is this day going to be different than the last trip, are we forgetting anything, etc... In the meantime trying to soak up every minute with our little one. Got the car packed and grabbed my coffee (not that I need something to heighten my senses) and heEded south. The drive was quiet. We had 104.9 the river radio station on and made our way down the high way on the rainy, cold morning. I listened for the messages in the sounds from the speakers and heard words like healer, savior, refuge. I had to stop and think, what if i intentionally listened for God's comfort and guidance. Is his presence always consistent and I choose to be so busy that I don't hear his comfort?
We arrived to the hospital on time. We were surprised to be greeted by a newfound friend from church when we walked into the front door This was a reassuring way to start the long journey down the hallway to the surgical unit and really was a foreshadowing of the wealth of support we would receive over the next 8 hours.

Mandi, Claire and I went through the pre operation procedures and preparation for the long day. Claire feel asleep on mandi and I enjoyed seeing them have some bonding time.
At 7:30, right on schedule, they came to get our Claire for her surgery. We walked down near the or and gave our sweet little one to the nurses after kisses. We knew from experience that the waiting had begun.

We made camp in one of the sections and grabbed a few extra chairs in preparation for all of the visitors. We had a lot of techniques to help us pass the 6 hours. At one point our crew had 4 laptops, an iPad, an iPod touch, an ipod, and a DVD player. You gotta love technology. At one point I had to laugh as I checked my facebook to find that many of those present had updated their facebook status and it was almost a race to see who could post updates the quickest. In addition, mandi and I were so comforted to know that so many, our closest friends and possible acquitances at best, were praying for our Claire. Verying comforting. I had to think about what a waiting room would have looked like about 10, 20, or 30 years ago. No mTter the case, Amanda and I were glad to be surrounded by such a great cloud of witnesses that were supporting us by practicing the ministry of presence and lifting our precious gal up before our heavenly father.
We received word about 1pm that the Dr G was finished with the procedure and the team was going to start the process of taking Claire off of the heart and lung by pass. Crazy technology again. I am thankful that was live in a great country with the research and response to help all children.
We remained in the waiting room for another couple of hours. Eventually Dr. G came out and shared that claire did pretty well. The surgery did take a little longer than expected because of the difficulty with the peripheral IVs. He did find that Claire has relatively small blood vessels which was way they had issues with the ivs. He also said that he needed to support her pulmonary artery a little. Overall, he was pleased with the procedure and he cautioned us of the upcoming wrestle with monitoring her pain as her body relearns how her lifeblood should flow through vessels to carry oxygen to her cells.
We were happy to get baby claire up to the cardiac icu. Mandi and I got to see our girl at 4pm. I was prepared to see her in a worst case than the last surgery. Luckily, this was not the case. She had some color and the team seemed to be regulating her pain pretty well. Two by two our family got to see her for the first time. I have admit, it was weird not being able to play with her and make her smile and laugh like we routinely had done over the pass 5 months when I would get home from work or after we put Colton to bed. I look forward to those time again.
We are now in the pain management stage of the recovery. We hope for a good night as we know the painful days to come.
We appreciate your thoughts and prayers.

1 hour down 5 more to come

We just got an update that the team has just started the process to put Claire on the heart and lung bypass. It did take a little longer in the pre operation procedures because they could not get a good IV line in. They will now proceed with the bypass and the procedures. Probably going to be more like a 6 hour procedure.

The countdown... 3 days

Mandi, Claire and I headed to Nationwide Children’s Hospital today for the pre-admission procedures for Claire's next surgery. We talked with the Cardiac Anesthesiologist, Cardiac Nurse practitioner, and our friend Keyona, the Cardiac Nurse. I will share the specific information below about the specific steps of the Unilateral Bidirectional Glenn Procedure that Claire will have on Monday. The IV team also tried to get blood samples from our chubby Claire Bear. They started with the left hand.... no success, then the right foot... no success, then the right hand... didn't happen, then the last try.... the left foot. No luck. Obviously, our little girl was crying uncontrollably the entire time. I could stop thinking about this is the Claire Bear we are going to have for a few days post opt. Here we go. The Cardiac Nurse practitioner decided that the blood sample could wait until Monday morning.

Unilateral, Bidirectional Glenn
We will arrive to Children's Hospital bright and early at 6am. Like most visits to a doctor, the day will start with paperwork and checking insurance. Claire will get a physical examination with blood labs to prepare for the operation. We will be able to have two people back with her during the pre-op procedures. Around 7:30am, Claire will head to the OR for her surgery. The anesthesiologist will start with gas and then the team will get the central and arterial IVs in place. Then, the doctors will use cool packs and a cooling blanket to lower Claire’s temperature for the procedure. An incision down the midline will allow access to the heart through the breastbone where the heart will be placed on by pass and the heart rate slowed in preparation for the surgery.
The normal circulatory system has just one Superior Vena Cava (SVC). This blood vessel carries deoxygenated blood from the upper circulatory system back to the right atrium of the heart. Our special Claire has a little different anatomy. Instead of having one large SVC, she has two smaller SVCs.
The purpose of the Glenn procedure is to connect the SVC to the pulmonary artery. This will reroute Claire’s deoxygenated to the lungs, not the heart. The typical heart has two collection chambers (right atrium collects deoxygenated blood from the body and the left atrium collects oxygenated blood from the lungs) and two pumping chambers (the right ventricle pumps blood to the lungs, the left ventricle pumps oxygenated blood to the body). As you may recall, Claire basically has half of a heart. The Glenn procedure will alleviate some of the work her little heart has to do. Here is my best explanation of the steps of this procedure:
1. Place the blood flow on by pass to allow for the doctors to work on the heart.
2. Disconnect the Superior Vena Cava (SVC) from heart.
3. Stitch the hole in the heart where the SVC used to be.
4. Reinforce the lower side of the pulmonary artery where the SVC is to be attached.
5. Connect the SVC to the upper portion of the Pulmonary Artery.
6. Remove the shunt that was added during the last surgery.
7. Repeat the procedure for the other SVC.

Obviously, this procedure is a lot more complicated than the 7 steps I listed above. We know that Claire will have a pretty tough day on Monday 10-4-10. She will have a lot of tubes and wires post-op. Usually the parents are not encouraged to hold their babies for about 2 days. The change in blood flow also causes swelling in the upper extremities, chest and head. This swelling usually causes extreme headaches in the first 24 hours after the surgery.
Our family would appreciate your thoughts and prayers during this difficult time.