Eli is cutting his back molars. Not a fun week in our house. He's been drooling enough to put out small fires, running fevers, isn't eating much and is just grouchy (not his normal attitude). Last night (Wednesday night/Thursday morning) he wouldn't go down for bed. That's very unusual for him because his normal is about 12 hours a night. Total he got about 3-4 :( As the night went on he got fussier & fussier and kept pulling at his ears. I was already giving him Tylenol & Ibuprofen so I tried a warm compress. He didn't like that, but he didn't like anything at this point.
Dr. Amy saw him this morning and said his ears are not very red but there's a lot of drainage. In addition to the Tylenol & Ibuprofen we've been using for pain & fever we're adding Dimetapp & Benadryl to help dry him up & relieve the pressure. If that doesn't work I have a script for an antibiotic we can fill over the weekend if we need it. We'd like to avoid the antibiotic if we can because he just got over a nasty yeast infection that took a long time to clear up, but of course if he needs it he will get it.
I know this is all normal stuff that isn't a big deal in the big picture of life, but because of Eli's heart problems his body reacts differently to normal things. When you have a fever your heartrate increases, but Eli's heartrate can't go faster. That means his lips & feet are purple more often. His blood pressure is higher. It adds to the "I don't feel good, Mommy" feeling he already has. His BP today was a little high and his oxygen saturation was a little lower than his normal, but these are expected for what he's going through now.
Thank you for the prayers that have been said for him. He's sleeping now, thank goodness! Hopefully he has a good weekend and is quickly feeling better soon.
Friday, May 11, 2012
Thursday, May 3, 2012
What Pump?
Something very exciting happened here today....we sent Eli's feeding pump back to the pharmacy! He hasn't had a tube feeding for a few months, but I was afraid to send the pump back until we were sure he wouldn't need it. Now...it's gone! Don't misunderstand me, we only sent the machine back to the pharmacy, Eli still has his feeding tube (MicKey button). He still takes his medicines through that although he's getting better about taking some of it orally. And we still have access if we need to tube a feeding to him, but he eats about anything we put in front of him. Seriously, the child doesn't turn much down.
We're trying to wean him off the formula and onto milk, but that's going slowly. We're also working on switching from a bottle to a sippy cup. He doesn't like the cup very well. He will drink out of a straw but won't use the sippy cups with straws. I'm really not too worked up about getting him off the bottle. I know most 18 month olds have moved from the bottle to the cup but in light of everything Eli has dealt with, we're not worried about this.
Eli is VERY close to walking on his own. He cruises furniture like nobody's business and can walk holding just one of our fingers, but he will not let go. I'm okay with that too ;) He'll be doing it very soon and I know we'll be so proud of the accomplishment. As he's worked with his physical therapist through these major mobility events (crawling, standing, cruising, walking), it's been so amazing to see how much energy it takes these little creatures to do these things we take for granted. I never knew how much more cardiac support was required to work the lower part of the body. Eli's always been very strong, and actually very well coordinated for his age (that must be from Daddy). His mobility delays haven't been a lack of strength, it's a lack of cardiac support. Our goal with physical therapy is to teach him how to make the most of what cardiac support he has.
He had an appointment with Dr. Amy yesterday. He weighs 22lbs 6oz, is 31 3/4 inches long. His heart rate was in the upper 70's (a little slow for his age but consistent with his junctional rhythm). His oxygen saturation ranged 86%-88% (that's about average for him). Overall, he's doing well. We're all noticing some minor things with him. He's more tired after a big family event (the zoo outing for example); his lips, fingers, & feet get blue more often, but he doesn't show any signs of distress when that happens; and he's consistently taking one long nap or two shorter naps a day in addition to sleeping well at night. All these are signs that his body is getting closer to needing that next surgery. We go back to the cardiologist at the end of June and will learn more about when the third stage of surgery will be. Right now we're roughly anticipating July or August, but that's just a guess at this point.
Eli is a very silly little boy. He makes a lot of faces and loves hearing Zachary laugh at him. He plays with trucks more than Zachary did at this age. He cracks up when we're in a public bathroom and someone tears the paper towel off the dispenser (for some reason, it's not nearly as funny when I tear off paper towel in the kitchen...go figure?). He also LOVES to unroll the toilet paper in any bathroom and, yes, thinks it's funny when that sheet is torn off as well. A sneeze makes him laugh (his or anyone else who sneezes!). One of his favorite games is to lift his foot to our face and have us smell his toes, then for us to say "Stinky Toes!" and act like we're gagging. He laughs hysterically. Going to Zachary's tball games is really fun for Eli. He sits in his little Mickey Mouse ("MiMo") lawn chair and claps for both teams. He yells "Bubba!" and points a lot. He knows he's a hot shot. Zachary & Eli play so well together and really learn a lot from each other. I could literally sit and watch them for hours if life would let me!
Thanks for reading and we hope you're all doing well!
We're trying to wean him off the formula and onto milk, but that's going slowly. We're also working on switching from a bottle to a sippy cup. He doesn't like the cup very well. He will drink out of a straw but won't use the sippy cups with straws. I'm really not too worked up about getting him off the bottle. I know most 18 month olds have moved from the bottle to the cup but in light of everything Eli has dealt with, we're not worried about this.
Eli is VERY close to walking on his own. He cruises furniture like nobody's business and can walk holding just one of our fingers, but he will not let go. I'm okay with that too ;) He'll be doing it very soon and I know we'll be so proud of the accomplishment. As he's worked with his physical therapist through these major mobility events (crawling, standing, cruising, walking), it's been so amazing to see how much energy it takes these little creatures to do these things we take for granted. I never knew how much more cardiac support was required to work the lower part of the body. Eli's always been very strong, and actually very well coordinated for his age (that must be from Daddy). His mobility delays haven't been a lack of strength, it's a lack of cardiac support. Our goal with physical therapy is to teach him how to make the most of what cardiac support he has.
He had an appointment with Dr. Amy yesterday. He weighs 22lbs 6oz, is 31 3/4 inches long. His heart rate was in the upper 70's (a little slow for his age but consistent with his junctional rhythm). His oxygen saturation ranged 86%-88% (that's about average for him). Overall, he's doing well. We're all noticing some minor things with him. He's more tired after a big family event (the zoo outing for example); his lips, fingers, & feet get blue more often, but he doesn't show any signs of distress when that happens; and he's consistently taking one long nap or two shorter naps a day in addition to sleeping well at night. All these are signs that his body is getting closer to needing that next surgery. We go back to the cardiologist at the end of June and will learn more about when the third stage of surgery will be. Right now we're roughly anticipating July or August, but that's just a guess at this point.
Eli is a very silly little boy. He makes a lot of faces and loves hearing Zachary laugh at him. He plays with trucks more than Zachary did at this age. He cracks up when we're in a public bathroom and someone tears the paper towel off the dispenser (for some reason, it's not nearly as funny when I tear off paper towel in the kitchen...go figure?). He also LOVES to unroll the toilet paper in any bathroom and, yes, thinks it's funny when that sheet is torn off as well. A sneeze makes him laugh (his or anyone else who sneezes!). One of his favorite games is to lift his foot to our face and have us smell his toes, then for us to say "Stinky Toes!" and act like we're gagging. He laughs hysterically. Going to Zachary's tball games is really fun for Eli. He sits in his little Mickey Mouse ("MiMo") lawn chair and claps for both teams. He yells "Bubba!" and points a lot. He knows he's a hot shot. Zachary & Eli play so well together and really learn a lot from each other. I could literally sit and watch them for hours if life would let me!
Thanks for reading and we hope you're all doing well!
Monday, April 23, 2012
Dinosaurs at the ZOO!
I've been very bad about posting lately. I changed our layout the other day and when I saw the last post was Feb 29 I was very ashamed of myself. Then it took another week to actually get one done! Many things have happened since our last post: Bryan & I now have a beautiful niece (Alyssa Mae), the Daviess County March for Babies walk was a great success, Albert had minor surgery (recovering well now), Eli is getting closer & closer to taking steps on his own, and we went to the Louisville Zoo on Sat the 21st. I may do other posts to elaborate about some of the other topics, but this one is about THE ZOO!
This is our third trip to the Louisville Zoo since Zachary's joined our family. Our last visit there was August 1 2010. I remember it well....it was HOT and I was 6 months pregnant (for those of you who remember, when I'm 6 months along I look much bigger than that, many people asked if I was overdue or how many I was carrying!). One of the big reasons we went to the zoo at that time was because we had just come back from a family vacation (Bryan's parents, grandmother, two sisters, brother-in-law, and the three of us rented a house in Florida for a week) and there Zachary discovered his love for dinosaurs. It started very innocently; we went to an ice cream shop and they put a small plastic dinosaur on his cone. He thought it was funny. He started playing with it. By the time we left that ice cream shop we had accumulated 4 dinosaurs. He played with them constantly. Keep in mind that he was still two years old at the time. Since then the obsession has grown, as most of you know. Once we were back home, Bryan's sister Cara called & said the L'ville Zoo had a dinosaur exhibit for a few weeks that Zachary might enjoy. So off to the zoo we went. The exhibit was more than we expected. They were motorized dinosaurs complete with sound. It was really cool. We spent a long time in that exhibit. Zachary was a little scared at first, but got used to it and we had a hard time getting out of there. Unfortunately, because of that visit, he thought the zoo always had dinosaurs and that ALL zoos had dinosaurs. That was difficult to explain when we later visited the zoos in Cincinnati & Evansville.
We were talking to Cara & Andrew the other day and they told us the dinos are coming back! We quickly checked it out online and found that the exhibit will be there until July 31st. We showed Zachary and he could hardly stop jumping around. We planned a trip and went on Saturday (which happened to be Alyssa's 1 month birthday!)
Again, we had a great time. They had changed the exhibit since last time and several of the dinosaurs were new ones. Both times they had one that would randomly spit (water) at the gathered crowed, much to Zachary's enjoyment! I had a little moment early in the trip. We saw the elephants early this time (last time it was one of the last animals we saw). As I stood there holding Eli, watching him point at the elephants as they ate and stared at us, I vividly remembered rubbing my swollen belly watching the elephants on our last visit. I remember thinking I how exciting it would be to come back as a family of four and let this baby see the elephants too. I was overwhelmed with emotion as I held Eli and I started crying. I was so happy to just be holding him after everything we've been through since our last visit, I was so sad because of everything he's endured and the hopes I silently had before his birth have been altered so much. It's not been the journey we expected. I know the best way to make God laugh is to tell Him your plans, but what expectant parent doesn't make plans? As we walked away from the elephants I was trying to dry my unexpected tears and gather myself when Eli started laughing. It was the perfect moment to remind me that the path we're on is exactly where we're supposed to be and that we have two choices: a) wallow in grief and miss the present or b) trudge along and enjoy Every Little Beat with a few reminiscent tears thrown in at times.
Anyway, we had a WONDERFUL time seeing the dinosaurs and all the other animals. The zoo wasn't crowded at all because it was cold (not sure it got above 55 all day) and there was a huge air show in Louisville that most people were attending instead of the zoo.
Here's some pictures to enjoy! We're already planning our next trip back while the dinosaurs are still there :)
This is our third trip to the Louisville Zoo since Zachary's joined our family. Our last visit there was August 1 2010. I remember it well....it was HOT and I was 6 months pregnant (for those of you who remember, when I'm 6 months along I look much bigger than that, many people asked if I was overdue or how many I was carrying!). One of the big reasons we went to the zoo at that time was because we had just come back from a family vacation (Bryan's parents, grandmother, two sisters, brother-in-law, and the three of us rented a house in Florida for a week) and there Zachary discovered his love for dinosaurs. It started very innocently; we went to an ice cream shop and they put a small plastic dinosaur on his cone. He thought it was funny. He started playing with it. By the time we left that ice cream shop we had accumulated 4 dinosaurs. He played with them constantly. Keep in mind that he was still two years old at the time. Since then the obsession has grown, as most of you know. Once we were back home, Bryan's sister Cara called & said the L'ville Zoo had a dinosaur exhibit for a few weeks that Zachary might enjoy. So off to the zoo we went. The exhibit was more than we expected. They were motorized dinosaurs complete with sound. It was really cool. We spent a long time in that exhibit. Zachary was a little scared at first, but got used to it and we had a hard time getting out of there. Unfortunately, because of that visit, he thought the zoo always had dinosaurs and that ALL zoos had dinosaurs. That was difficult to explain when we later visited the zoos in Cincinnati & Evansville.
We were talking to Cara & Andrew the other day and they told us the dinos are coming back! We quickly checked it out online and found that the exhibit will be there until July 31st. We showed Zachary and he could hardly stop jumping around. We planned a trip and went on Saturday (which happened to be Alyssa's 1 month birthday!)
Again, we had a great time. They had changed the exhibit since last time and several of the dinosaurs were new ones. Both times they had one that would randomly spit (water) at the gathered crowed, much to Zachary's enjoyment! I had a little moment early in the trip. We saw the elephants early this time (last time it was one of the last animals we saw). As I stood there holding Eli, watching him point at the elephants as they ate and stared at us, I vividly remembered rubbing my swollen belly watching the elephants on our last visit. I remember thinking I how exciting it would be to come back as a family of four and let this baby see the elephants too. I was overwhelmed with emotion as I held Eli and I started crying. I was so happy to just be holding him after everything we've been through since our last visit, I was so sad because of everything he's endured and the hopes I silently had before his birth have been altered so much. It's not been the journey we expected. I know the best way to make God laugh is to tell Him your plans, but what expectant parent doesn't make plans? As we walked away from the elephants I was trying to dry my unexpected tears and gather myself when Eli started laughing. It was the perfect moment to remind me that the path we're on is exactly where we're supposed to be and that we have two choices: a) wallow in grief and miss the present or b) trudge along and enjoy Every Little Beat with a few reminiscent tears thrown in at times.
Anyway, we had a WONDERFUL time seeing the dinosaurs and all the other animals. The zoo wasn't crowded at all because it was cold (not sure it got above 55 all day) and there was a huge air show in Louisville that most people were attending instead of the zoo.
Here's some pictures to enjoy! We're already planning our next trip back while the dinosaurs are still there :)
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| HELP!!!! My boy's being eaten by a T Rex! I love how blue his eyes are in this picture! |
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| August 2010, Zachary was almost 3 and I'm 6 months pregnant with Eli. |
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| Zachary's size compared to a full grown gorilla in August 2010. |
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| This is Zachary 20 months later. |
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| It was pretty cold so we borrowed a blanket from baby Alyssa to help keep Eli warm. Most of him was warm, but his hands were cold all day (I'm sure it had nothing to do with him chewing on them & his sleeves all day!) |
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| Zachary looking at turtles in the tank. |
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| "Flintstones, meet the Flintstones...." It's really hard to sit on a dino's back! |
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| Cara, Andrew & Alyssa Foreman Their first family photo on a dinosaur. |
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| This is a Suchomimus.... |
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| this is a Suchomimus spitting and surprising people! |
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| This is a Megalosaurus. My boys weren't phased by it at all. Notice Zachary's dino hat & claw gloves he HAD to wear most of the day. It was very cute & helped keep him warm too. He got lots of comments about his attire. |
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| Zachary at the dino dig. He knew exactly what to do...use the shovels until you find bone then use the brushes so you don't damage the bone. It took a long time to get him out of this! |
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| Zachary-asaurus holding his baby cousin, Alyssa. He was worried that the dinosaurs, lions, tigers, and other animals would scare her. He decided she'd be okay if we kept telling her they were in their cages & couldn't get to us. |
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| This is Zachary's favorite dinosaur (this week), a Pachycephalosaurus. This gives an idea of how big these robot dinosaurs are. We're standing several feet in front of it. I'm almost 6 feet tall and it towers me. The detail put into these is incredible. |
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| Eli waving to a Megalosaurus as it growled at us and turned its head. |
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| Eli loved the polar bear exhibit. He thought it was funny to watch the bear swim and come up with toys. |
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| We are excited to go back when this exhibit is finished, but it was pretty nice already! |
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| Family photo in front of the gorilla exhibit. |
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| There's a fenced in area with several kangaroo. Groups of people can walk on the path in the area with a guide and be right in with the animals. In one photo we got, a kangaroo has her hand in her pouch, guess she was cold too! |
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| Who wouldn't have fun with this group? |
Wednesday, February 29, 2012
Echo Update
If you read the last post, you know we've been battling a stomach flu around here. When Monday morning rolled around, I was pretty sick, so my wonderful husband took the day off work. He was starting to feel bad himself, but he took Eli to Evansville for the echo and appointment with Dr. Kumbar.
Eli did well during the echo. They only had to stop once because of fussing (I didn't ask, but I assumed it was Eli fussing and not Bryan). Bryan said it helped that Eli watched Elmo's World while it was being done...thank goodness for puppets :)
Once at the appointment, an EKG was done. That showed his rhythm is still junctional. At this point, we don't expect his rhythm to change on its own, but we just keep hoping. In a way, I'm happy to know that it's consistently been junctional and isn't changing from one rhythm to another. That would be very rough on him.
Since Eli has tolerated the junctional rhythm so well, Dr. Kumbar wants to restart him on Captopril. That's a medicine to help increase his heart function. He took it regularly after his first heart surgery, but stopped after the second one because of the rhythm. He's done well since being off of it, but it's time for him to resume. He needs the extra help.
Dr. Kumbar said there were a couple things to watch on the echo, but these are things that have been seen previously and we were already watching. One of those things is his mitral valve (valve between the left atrium and left ventricle) is leaking. Again, this is something we already knew and will continue to monitor.
The big news of the day was his oxygen saturation....it was 94%! I don't know if it's ever been that high! He usually hovers in the low to mid 80s. Obviously, he wasn't sporting any bluish lips or fingers when that level was taken!
Overall, she's very pleased and Eli will go back to see Dr. Steinberg in June. He's the one who will ultimately make the decision about when to proceed with a pacemaker and third surgery (Fontane completion).
I've never missed any of Eli's doctor appointments or tests before. Even though he was with his daddy, I hated not being with them and getting to hear the news myself. Some of that is the nurse in me, but mostly it's the mommy.
I think the four of us are on the mend. Bryan stayed home today too. He was feeling pretty bad by the time they got back from Evansville. His stomach is better tonight, but just feels dizzy at times and has no energy. That pretty much sums it up for all of us. We can eat, but don't really want to (that's NOT normal for any of us!).
Eli goes to Dr. Amy's this Friday for his Synagis injection. If you're not familiar with that, it's a vaccination against RSV (Respiratory Syncytial Virus), a virus that is very dangerous for babies but especially ones who were premature or have other health issues. It's a very expensive medicine, but well worth it when you compare it to the cost of a hospitalization or the risk of death because of RSV. Last month we paid $4500 for his monthly dose (he's big enough now that he requires two vials...yea?). This month, we've met his deductible and only had to pay $50! Even better news is that he's approved for 3 more this season. We thought he would only be approved through this month, so we're relieved.
Thanks for all the prayers and support since my last post. We know everyone is dealing with a lot of issues of their own, and the fact that people continue reaching out to us is very touching. I usually end these with a request for prayers, but this time I want you to know that I'm praying for you. My prayer is one of thanks for caring about our family, for peace in your own lives, and that any struggles you're having are relieved. Again, thanks for reading.
Eli did well during the echo. They only had to stop once because of fussing (I didn't ask, but I assumed it was Eli fussing and not Bryan). Bryan said it helped that Eli watched Elmo's World while it was being done...thank goodness for puppets :)
Once at the appointment, an EKG was done. That showed his rhythm is still junctional. At this point, we don't expect his rhythm to change on its own, but we just keep hoping. In a way, I'm happy to know that it's consistently been junctional and isn't changing from one rhythm to another. That would be very rough on him.
Since Eli has tolerated the junctional rhythm so well, Dr. Kumbar wants to restart him on Captopril. That's a medicine to help increase his heart function. He took it regularly after his first heart surgery, but stopped after the second one because of the rhythm. He's done well since being off of it, but it's time for him to resume. He needs the extra help.
Dr. Kumbar said there were a couple things to watch on the echo, but these are things that have been seen previously and we were already watching. One of those things is his mitral valve (valve between the left atrium and left ventricle) is leaking. Again, this is something we already knew and will continue to monitor.
The big news of the day was his oxygen saturation....it was 94%! I don't know if it's ever been that high! He usually hovers in the low to mid 80s. Obviously, he wasn't sporting any bluish lips or fingers when that level was taken!
Overall, she's very pleased and Eli will go back to see Dr. Steinberg in June. He's the one who will ultimately make the decision about when to proceed with a pacemaker and third surgery (Fontane completion).
I've never missed any of Eli's doctor appointments or tests before. Even though he was with his daddy, I hated not being with them and getting to hear the news myself. Some of that is the nurse in me, but mostly it's the mommy.
I think the four of us are on the mend. Bryan stayed home today too. He was feeling pretty bad by the time they got back from Evansville. His stomach is better tonight, but just feels dizzy at times and has no energy. That pretty much sums it up for all of us. We can eat, but don't really want to (that's NOT normal for any of us!).
Eli goes to Dr. Amy's this Friday for his Synagis injection. If you're not familiar with that, it's a vaccination against RSV (Respiratory Syncytial Virus), a virus that is very dangerous for babies but especially ones who were premature or have other health issues. It's a very expensive medicine, but well worth it when you compare it to the cost of a hospitalization or the risk of death because of RSV. Last month we paid $4500 for his monthly dose (he's big enough now that he requires two vials...yea?). This month, we've met his deductible and only had to pay $50! Even better news is that he's approved for 3 more this season. We thought he would only be approved through this month, so we're relieved.
Thanks for all the prayers and support since my last post. We know everyone is dealing with a lot of issues of their own, and the fact that people continue reaching out to us is very touching. I usually end these with a request for prayers, but this time I want you to know that I'm praying for you. My prayer is one of thanks for caring about our family, for peace in your own lives, and that any struggles you're having are relieved. Again, thanks for reading.
Sunday, February 26, 2012
Stomach Bugs and Echos
This will just be a quick update and request. Our house is sickly right now, Eli's been vomiting off and on for a few days and having loose stools. I was supposed to work last night, but was put on call. That turned out to be a blessing in disguise because Zachary woke up vomiting at 12:45am. He kept that up through the night and I started early this morning. We think the boys are getting better, but I'm working on getting to the "nothing happening, just feel lousy" stage. Bryan is taking good care of us and doing a pretty good job! Hopefully he can avoid whatever we've had.
In addition to all that excitement, Eli has an appointment with his cardiologist in Evansville tomorrow. He will have an echo before the appointment. I always start to get nervous when he has one approaching. I've been seeing little signs that tell me his endurance may not be what it was before. His activity level doesn't seem to be what it was a few weeks ago. At times, I think he's sleeping more. Like I said, I usually do this before he has an echo. This time, however, his physical therapist and speech therapist have had minor concerns too. It makes me feel better that I'm not the only one seeing things, but it concerns me that others have concerns as well. I'm hoping that maybe he's just not been feeling well for a while and will start to feel better after we get over this round of illness in our house.
Overall, he's still playing, being his usual happy self, and eating pretty well. We just think we see some vague signs that may indicate things aren't going as well as they had been.
With Eli, it's so hard to tell what's going on. He had a rough January with ear infections, colds & tonsillitis, so maybe he's just having trouble getting over that. Maybe it's just his body "preparing" for this illness. Maybe he's having trouble adjusting to the milk we've added to his diet. Maybe his heart function is decreasing. Maybe he found an activity level he's comfortable with and just doesn't challenge it. Maybe, maybe, maybe.
So, that's our update. Now, here's the requst: Please pray for all of us to get over this stomach bug. Please pray for Eli's echo to go smoothly (he's developed a severe dislike of medical personnel and their equipment, our last echo in Evansville should've been about 45 minutes but was over 3 hours). Please pray for good results from the echo.
Again, thanks for reading and caring about our family.
In addition to all that excitement, Eli has an appointment with his cardiologist in Evansville tomorrow. He will have an echo before the appointment. I always start to get nervous when he has one approaching. I've been seeing little signs that tell me his endurance may not be what it was before. His activity level doesn't seem to be what it was a few weeks ago. At times, I think he's sleeping more. Like I said, I usually do this before he has an echo. This time, however, his physical therapist and speech therapist have had minor concerns too. It makes me feel better that I'm not the only one seeing things, but it concerns me that others have concerns as well. I'm hoping that maybe he's just not been feeling well for a while and will start to feel better after we get over this round of illness in our house.
Overall, he's still playing, being his usual happy self, and eating pretty well. We just think we see some vague signs that may indicate things aren't going as well as they had been.
With Eli, it's so hard to tell what's going on. He had a rough January with ear infections, colds & tonsillitis, so maybe he's just having trouble getting over that. Maybe it's just his body "preparing" for this illness. Maybe he's having trouble adjusting to the milk we've added to his diet. Maybe his heart function is decreasing. Maybe he found an activity level he's comfortable with and just doesn't challenge it. Maybe, maybe, maybe.
So, that's our update. Now, here's the requst: Please pray for all of us to get over this stomach bug. Please pray for Eli's echo to go smoothly (he's developed a severe dislike of medical personnel and their equipment, our last echo in Evansville should've been about 45 minutes but was over 3 hours). Please pray for good results from the echo.
Again, thanks for reading and caring about our family.
Friday, February 17, 2012
March of Dimes
We have been asked to be the 2012 March of Dimes Ambassador Family for Daviess County! We are so excited to be a small part of this very important organization.
Most people are aware of the tremendous work the March of Dimes does in relation to premature births, but they are also very active in funding research to treat and prevent birth defects. Eli's future is dependent on medical advances. After his third heart surgery, we wait. The goal of his three surgeries is to make his heart as functional as possible for as long as possible. That could be a few months, a few years, or a decade or
improve the health of babies by
preventing birth defects, premature birth, and infant mortality.
This has quickly become something that Bryan and I feel strongly about, and we are privileged to be involved. Until we became involved with the March of Dimes, we didn't realize how instrumental they are in birth defect research. If we, as a family who's been deeply affected by heart defects, weren't fully aware of the full capacity of the March of Dimes, then what does the general population know?
We started a team and called it "Eli's MVPs." We are currently consumed with planning fundraisers to reach (and hopefully surpass!) our goal. If you have any fundraising suggestions, please let us know. We will let you know about different events as we plan them. The conclusion of our 2012 fundraising will be the March for Babies Walk in Daviess County. It is scheduled for April 14 --- that's only 57 days from today!!!
Saturday, February 11, 2012
Thinking About My Dad
My dad died eight years ago today. I'm still not used to saying that he's gone, but at the same time it seems like it's been longer than that. Although I miss him every single day, the hardest days for me were the days Zachary & Eli were born. I would love to see him hold them & do all the grandparent things. We're sooo lucky to still have my mom & Bryan's parents, but the little girl in me wants my dad there too. I know my dad sees the boys, but I want to see him enjoy them.
Today also makes me think back to one year ago; Eli was scheduled to have his G-tube surgically placed. When they set the date for 02/11/11 it didn't bother me at first, but as the day got closer I got more nervous. It's always scary to have your child under anesthesia, but especially so for one with such a complex and stressed heart as Eli's. He was just a month out from major heart surgery, he was only nine pounds, he was only 15 weeks old, and his surgery was scheduled for the seventh anniversary of my dad's death. I just made myself view it as a sign that Dad would be closer to him and help protect him through the surgery.
Then, as luck would have it, things changed. The two doctors who were to do Eli's surgery got pulled into two emergency cases. They wouldn't be available to work on Eli until after 5 that day, which was not something they wanted to do. Eli's surgery was pretty routine, but he is not, so they wanted to do it early in the day just in case something did happen. He was rescheduled for Monday morning, Valentine's Day. I've never been so relieved for someone else to have an emergency (I was told both emergent cases did fine). In my heart, I knew Eli would be fine from this surgery, but the dark shadows in the back of my mind wouldn't go away. I couldn't bear to lose them both on the same day. Fortunately, everything went well with the G-tube placement and we have absolutely no regrets about doing it. I'm sorry that he needs it, but it has been a major relief and assistance to have it.
Just some random memories about Dad:
It may sound strange, but Dad's illness and death really helped prepare me to deal with Eli's condition. It taught me to "let go and let God," that He is guiding me even when I feel like I've fallen into an emotional black hole, and that despite what happens there's always another reason to keep going.
No matter how old we are, parents have their ways of teaching us lessons...in life and in death.
Today also makes me think back to one year ago; Eli was scheduled to have his G-tube surgically placed. When they set the date for 02/11/11 it didn't bother me at first, but as the day got closer I got more nervous. It's always scary to have your child under anesthesia, but especially so for one with such a complex and stressed heart as Eli's. He was just a month out from major heart surgery, he was only nine pounds, he was only 15 weeks old, and his surgery was scheduled for the seventh anniversary of my dad's death. I just made myself view it as a sign that Dad would be closer to him and help protect him through the surgery.
Then, as luck would have it, things changed. The two doctors who were to do Eli's surgery got pulled into two emergency cases. They wouldn't be available to work on Eli until after 5 that day, which was not something they wanted to do. Eli's surgery was pretty routine, but he is not, so they wanted to do it early in the day just in case something did happen. He was rescheduled for Monday morning, Valentine's Day. I've never been so relieved for someone else to have an emergency (I was told both emergent cases did fine). In my heart, I knew Eli would be fine from this surgery, but the dark shadows in the back of my mind wouldn't go away. I couldn't bear to lose them both on the same day. Fortunately, everything went well with the G-tube placement and we have absolutely no regrets about doing it. I'm sorry that he needs it, but it has been a major relief and assistance to have it.
Just some random memories about Dad:
- I believed anything he said, against my better judgment: I went to a hardware store to buy a left-handed-monkey wrench because he asked for one, I believed he was a dog in a former life, and that he chopped every piece of wood in the woodpile at his old homeplace 30 years after he left there.
- four-wheeling at Grandma Dot's through the strip mines
- picking out my first pair of glasses with him: I have no sense of style, especially as a fifth-grader and those glasses proved it. They were ugly blue snakeskin type frames that were too small and with lenses that tinted in the sun. As soon as I saw my mom's face the first time I wore them I knew they were wrong, but I couldn't have new ones for at least a year. The second pair was no better than the first!
- he wore a cowboy hat and boots almost all the time. Not a lot of guys can pull that off, but he was an authentic "don't give a s*#t" kind of guy so it worked
It may sound strange, but Dad's illness and death really helped prepare me to deal with Eli's condition. It taught me to "let go and let God," that He is guiding me even when I feel like I've fallen into an emotional black hole, and that despite what happens there's always another reason to keep going.
No matter how old we are, parents have their ways of teaching us lessons...in life and in death.
Glen Michael Norris
02/05/48 - 02/11/04
♥ Love you and miss you, Dad! ♥
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