Tuesday, October 5, 2010
Monday, October 4, 2010
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.
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.
Friday, October 1, 2010
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.
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.
Sunday, September 5, 2010
You hold me now
Hillsong United
You Hold Me Now
http://www.youtube.com/watch?v=Qx2-Inc8TkA
VERSE 1:
On that day when I see
All that You have for me
When I see You face to face
There surrounded by Your grace
All my fears swept away
In the light of Your embrace
Where Your love is all I need
And forever I am free
PRE CHORUS 1:
Where the streets are made of gold
In Your presence healed and whole
Let the songs of heaven
Rise to You alone
CHORUS:
No weeping no hurt or pain
No suffering You hold me now
You hold me now
No darkness no sick or lame
No hiding You hold me now
You hold me now
VERSE 2:
In this life I will stand
Through my joy and my pain
Knowing there's a greater day
There's a hope that never fails
Where Your Name is lifted high
And forever praises rise
For the glory of Your Name
I'm believing for the day
PRE CHORUS 2:
Where the wars and violence cease
All creation lives in peace
Let the songs of heaven
Rise to You alone
BRIDGE:
For eternity
All my heart will give
All the glory to Your Name
You Hold Me Now
http://www.youtube.com/watch?v=Qx2-Inc8TkA
VERSE 1:
On that day when I see
All that You have for me
When I see You face to face
There surrounded by Your grace
All my fears swept away
In the light of Your embrace
Where Your love is all I need
And forever I am free
PRE CHORUS 1:
Where the streets are made of gold
In Your presence healed and whole
Let the songs of heaven
Rise to You alone
CHORUS:
No weeping no hurt or pain
No suffering You hold me now
You hold me now
No darkness no sick or lame
No hiding You hold me now
You hold me now
VERSE 2:
In this life I will stand
Through my joy and my pain
Knowing there's a greater day
There's a hope that never fails
Where Your Name is lifted high
And forever praises rise
For the glory of Your Name
I'm believing for the day
PRE CHORUS 2:
Where the wars and violence cease
All creation lives in peace
Let the songs of heaven
Rise to You alone
BRIDGE:
For eternity
All my heart will give
All the glory to Your Name
Tuesday, August 31, 2010
A message from Job
what do you think is the relationship between blessing from God and the obediance to him?Why do we seem to think that if we live a good life and add a ceckmark in front of a religious list that we deserve to keep that good life? Job was a geat man, greatest among those in the East. His wealth, his family. Gone. Crazy, how would I react? Would I curse God and die?
Satan assumes that humans will not follow God without some payoff. He even kind of taunts God seemingly saying "they don't love you that much" or "they only love you when things are going right"
Interesting that God is silent for 37 chapters and the in chp 38:4 - God asks Job a series of questions. At first glance this looks demeaning. Deep down, I think God does some encouarging and educating during this long series of questions. One statement is out of place. Why does God send water where no one lives? What's the point? Why would you put the most valuable resource at this time where no one lives and like it? Why would you use this language to a man hurting, a man in the circumstances of Job?
HE GIVES FOR NO REASON AT ALL BECAUSE THAT IS WHO GOD IS. He is that kind of God who delights in giving for no reason at all.
In the end, does Job learn anything?
Job 42:15 - notice Job gives an inheritance to his daughters; this just didn't happen in these times. Why would he do this?
Job, through his relationship with God, has learned to delight in giving for no reason.
Wednesday, July 21, 2010
Getting closer
this is a picture of all of us in our matching "day for hearts" tshirts (this wonderful little carnival they have for all the little heart kids and their families at children's. colt had a blast, and loved that we all got matching tshirts.
Sorry for being absolutely terrible about updating the blog but with two kids it leaves little time for blog updating. Claire has been growing like crazy. She is 12.5lbs now which puts her in the 50th percentile....quite a bit of growing in her little 3 months considering she was only 6lbs 2 months ago and in the 5th percentile. We had our monthly checkup with Dr Wheller, our cardiologist, and said Claire is doing wonderful. Her oxygen saturation is right where they want it to be (low 80's) and she is chunky (one of the best indicators that a baby is doing well). So, we are headed for the next step in the middle of august. We will go back to the cardiologist for an echocardiogram (ultrasound of the heart) and have an appointment wiht Dr Wheller. After that appointment he will present Claire's case and we will get a surgery date after that point. WOW, hard to believe that we will be headed back to children's for another surgery in just a couple of months. I have had so many emotions streaming through me. There is lots of differences this time around. We know what we are getting into....(we know the good places to eat around the hospital, we are fimilar with the cicu and stepdown) in that perspective it should be a lot easier. Unfortunately this time around Claire will be around 6 months. For all my mommies and daddies out there you know how awful it would be to have a baby that wants to held and you cant hold them. This time around Claire KNOWS us, and that is a major difference. Once again, we are calling on our prayer warriors! I am still humbled and awed by God protecting and healing our baby girl the first time.....and interested to see what we will learn this time around.
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