We are over 28 pounds! Luke weighed 28 pounds 5 ounces at the dietician's this week. That was a gain of a little over a pound in three months. With that rate of weight gain, we are right on track to hit 31 pounds for the Fontan this summer. Good goin' little buddy!
Even as I typed the above paragraph, a little whispered warning reminded me not to think I know best when it comes to the timing of Luke's next open-heart surgery. I don't. God does. I can't get so focused on getting Luke to the Fontan next August that I lose the ability to hear what God has to say about it all! In all honesty, it would be tough for me if for some reason Luke's doctors want to push off the Fontan another year ... but this next surgery isn't about being emotionally convenient for me. It's about what what is best for Luke, to give him the best chance of a good outcome.
Lord, help me to live in the freedom that you have it all under control!
Friday, November 13, 2009
Thursday, November 5, 2009
It's a toss-up
Or Daylight Savings Time with a toddler?
Treat: Auntie Jenny celebrated Halloween with us!
Treat: Luke discovered the delicious-ness of Twix and Milky Way's.
Trick: You mean to get this candy I have to say "Trick-or-Treat" to a complete stranger? Count me out!
Wednesday, October 28, 2009
It's different in black and white
How many times have I said the words "single ventricle" or "complex congenital heart defect" since Luke was diagnosed over three years ago? These words have become commonplace in our family and pass our lips often.
In our mailbox today was a thick packet from Seattle Children's Hospital Office of Records. I had sent in a request a few weeks ago to receive copies of Luke's medical and surgical records from his two stays at Children's. With how often I talk about or think about Luke's heart defect, it surprised me how much it shook me to see Luke's medical history in black and white. When I dug a little deeper through the layers of emotions, I think the source of my disquiet is simply this: I don't want my son to have a complex congenital heart defect. I didn't want him to have two open heart surgeries and I don't want him to have another one. I don't want his chest to be opened yet again. I don't want him to breathe hard or be limited and I don't want him to feel self-conscious of his scars. I don't want him to have uncomfortable blood draws and I don't want him to be scared of doctors.
But I have to follow those statements with this one: I know that God has been and will continue to be glorified in Luke's heart. And in the end, that's all that matters.
I remember the night before Luke's first surgery at five weeks old. A group of about 10 of us gathered around Luke's hospital crib and prayed. We beseeched God to protect Luke and to guide the surgeon. We prayed for Luke and we prayed for peace.
God was glorified.
The next day, we were paged about an hour into the operation and called down to meet with Dr. Cohen. "There's been a change of plans." What? Now that was a dreadful walk down to meet the surgeon. The news was good. Dr. Cohen didn't feel that at this time Luke needed the Damus-Kaye-Stansel. He felt his aorta was big enough to provide adequate systemic blood flow. "I would like, instead, to place a Pulmonary Artery band. This is a much less complex procedure, with less time on the by-pass machine and a quicker recovery." Roger and I, grasping hands, walked back upstairs to share the news with friends and family. Again, we circled to pray.
God was glorified.
We have been told more than once that witnessing Luke's heart journey has made them more intentional to live grateful lives and to teach their children the same.
God is glorified.
In the practical sense, I am grateful to have Luke's medical record. I think the more we parents know about our children's heart defects, the better. We can ask better questions and make better decisions. In the spiritual sense, I am grateful to have Luke's medical records because they again remind me of how big God is.
You wouldn't expect to get a chuckle reading these records, but I had to laugh at this comment on an echo report dated 8/22/2007 (9 days post-Glenn and DKS):
"Limited exam on extremely active infant." Yep, that's our Luke! He is so much more than his diagnosis, so much more than what was written in his charts in black and white.
In our mailbox today was a thick packet from Seattle Children's Hospital Office of Records. I had sent in a request a few weeks ago to receive copies of Luke's medical and surgical records from his two stays at Children's. With how often I talk about or think about Luke's heart defect, it surprised me how much it shook me to see Luke's medical history in black and white. When I dug a little deeper through the layers of emotions, I think the source of my disquiet is simply this: I don't want my son to have a complex congenital heart defect. I didn't want him to have two open heart surgeries and I don't want him to have another one. I don't want his chest to be opened yet again. I don't want him to breathe hard or be limited and I don't want him to feel self-conscious of his scars. I don't want him to have uncomfortable blood draws and I don't want him to be scared of doctors.
But I have to follow those statements with this one: I know that God has been and will continue to be glorified in Luke's heart. And in the end, that's all that matters.
I remember the night before Luke's first surgery at five weeks old. A group of about 10 of us gathered around Luke's hospital crib and prayed. We beseeched God to protect Luke and to guide the surgeon. We prayed for Luke and we prayed for peace.
God was glorified.
The next day, we were paged about an hour into the operation and called down to meet with Dr. Cohen. "There's been a change of plans." What? Now that was a dreadful walk down to meet the surgeon. The news was good. Dr. Cohen didn't feel that at this time Luke needed the Damus-Kaye-Stansel. He felt his aorta was big enough to provide adequate systemic blood flow. "I would like, instead, to place a Pulmonary Artery band. This is a much less complex procedure, with less time on the by-pass machine and a quicker recovery." Roger and I, grasping hands, walked back upstairs to share the news with friends and family. Again, we circled to pray.
God was glorified.
We have been told more than once that witnessing Luke's heart journey has made them more intentional to live grateful lives and to teach their children the same.
God is glorified.
In the practical sense, I am grateful to have Luke's medical record. I think the more we parents know about our children's heart defects, the better. We can ask better questions and make better decisions. In the spiritual sense, I am grateful to have Luke's medical records because they again remind me of how big God is.
You wouldn't expect to get a chuckle reading these records, but I had to laugh at this comment on an echo report dated 8/22/2007 (9 days post-Glenn and DKS):
"Limited exam on extremely active infant." Yep, that's our Luke! He is so much more than his diagnosis, so much more than what was written in his charts in black and white.
Monday, October 26, 2009
Some is better than none!
We were able to get Luke his first H1N1 vaccine today at the Mary Bridge Immunization Clinic. On Friday they got a shipment in for high-risk kids and their siblings. Despite my begging and pleading, they wouldn't give me a dose. At least Mr. Luke has will have some immunity shortly. I was relieved to hear that kids are responding well to this first dose and although they don't have peak immunity until they receive the booster, they definitely have some antibodies building up to fight this nasty virus.
Since Luke just got the seasonal flu shot about a month ago, I was a bit at a loss on how or when to tell Luke he was getting another one today. Rog and I decided to just tell him this morning we were going to get some medicine and then see the fishies (Mary Bridge has a cool aquarium that Luke really likes). He okay'd that plan and I think it worked well to not tell him he was getting a shot. We sat down in the clinic and he immediately knew what was coming. He started to whine, but the nurse was great and FAST and I think it helped that she had him look when she was done to show him "no more pinch. Just band-aid." He cried for about 10 seconds but quickly dried his tears when I suggested we go look at the fishies. Compared to the seasonal flu shot, this was a walk in the park! And now he proudly shows his band-aid and tells people, "I was so brave! I didn't cry!"
Lord, please continue to protect our family and all the heart families from H1N1!
Since Luke just got the seasonal flu shot about a month ago, I was a bit at a loss on how or when to tell Luke he was getting another one today. Rog and I decided to just tell him this morning we were going to get some medicine and then see the fishies (Mary Bridge has a cool aquarium that Luke really likes). He okay'd that plan and I think it worked well to not tell him he was getting a shot. We sat down in the clinic and he immediately knew what was coming. He started to whine, but the nurse was great and FAST and I think it helped that she had him look when she was done to show him "no more pinch. Just band-aid." He cried for about 10 seconds but quickly dried his tears when I suggested we go look at the fishies. Compared to the seasonal flu shot, this was a walk in the park! And now he proudly shows his band-aid and tells people, "I was so brave! I didn't cry!"
Lord, please continue to protect our family and all the heart families from H1N1!
Wednesday, October 21, 2009
Where's mama goin'?
I love to exercise. I love to run, mostly, but really I enjoy most all activity. Circuit training, biking, elliptical, (did I mention running?). And I'm sure I would like Zumba or Spoga (what's Spoga?) if I gave them a try.
I'm thankful that Luke has learned at a young age that exercise is worthwhile and rewarding. I'm a little worried, however, that his perception of exercise leans a little on the unhealthy side considering every time I leave him he says, "Mama's going to exercise!" Or when spending the night at Nonna and Papa's a couple of weekends ago his response to "Where did Mom and Dad go?" was, you guessed it, "To exercise!"
In the spirit of his enthusiasm for exercise, I had to share this:
And just for the record, this was not my idea!
I'm thankful that Luke has learned at a young age that exercise is worthwhile and rewarding. I'm a little worried, however, that his perception of exercise leans a little on the unhealthy side considering every time I leave him he says, "Mama's going to exercise!" Or when spending the night at Nonna and Papa's a couple of weekends ago his response to "Where did Mom and Dad go?" was, you guessed it, "To exercise!"
In the spirit of his enthusiasm for exercise, I had to share this:
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