It's that time again. Time to pack up and head up North to complete the rest of Cam's finger seperation. I am so NOT ready. But honestly, when it comes to surgery, I am never going to be ready. After Cam's last finger seperation, and having so much trouble after anesthesia, and having to spend an extra two days in the hospital when we should have only spent one, really has me anxious. I know he has to have it, but sometimes in my head I contemplate if he really needs ten fingers....I mean he has three functioning ones, and as long as I don't have to send him to surgery I'm ok with that. But realistically I know this isn't even an option. He needs ten fingers, and unfortunatley they haven't come up with any other way to achieve that except with surgery. So in four short days I will send my sweet boy into the OR yet again to have yet another operation.
Sometimes I wonder about God's decision. I wonder how a precense so loving and pure could cause so much pain for such a wonderful child. But then I remember that Cameron wouldn't be Cameron without his journey. He wouldn't have 12 beautiful scars that I have memorized on his precious little body. He wouldn't be the amazing warrior that I am so in love with. Cameron was made for surgery. It's the hardest thing for me to come to terms with, but it is what it is. God made Cameron the exact way he wanted him to be. He put together his body to withstand all of his multiple journeys to the operating room. He gave him a head that wasn't perfectly put together, fingers and toes that need seperation, a stomach that didn't work quite right, ears too small, a nose too small, and a heart that needed a little tweaking. But he made Cameron in his perfect image. Even though I shudder when it's time for him to go to surgery, I know that God chose us to be a part of Camerons walk for a reason. Sometimes I'm not so sure what that reason is, but I know one day, I will know, and most of the time that comforts me. I would be lying if I said that I don't get on a pitty party tangent every now and again, because I DO! I feel sorry for myself, for Cameron, for Paul, and for Max. I feel sorry that I don't have a child that is the picture of health. I feel sorry that instead of going on fun family vacations I get to plan trips for surgeries. I sometimes cry because I'm jelous of the fact that others have multiple healthy children, and complain about silly things, when they have never experianced anything close to what our family goes through almost constantly. I still get angry occasionally that surgery is a continual part of my life. I go through those stages sometimes, but I will say that at the end of the day I couldn't be more grateful and blessed to be the mother of the bravest child I know. He is so amazing and wonderful and I truly have the most to be thankful for!
So onto Boston. We leave Sunday and our intended flight back is Thursday. Please pray for safe travels, especially with this tropical storm brewing. Also please pray that we manage with two kiddos this time! And please pray especially for Cameron. For his continued strength, and for this surgery to go smoothly and for the Dr's and nurses and all of the staff to be able to complete this finger seperation with no problems. I am excited for this part of the journey to almost be over. Excited that my sweet little boy is about to have ten fingers....FINALLY!!!! Thanks for loving us and praying for us. I will update once everything is all said and done!
Friday, October 26, 2012
Monday, September 24, 2012
Time for an UPDATE!
Wow, whoever the "they" are that claims time flies, wasn't joking. I feel like there is no possible way that so much time has gone by since the last time I updated. The last post was how we managed to get Cam his three fingers, it took us awhile, and several cancelled surgeries, but he finally had his first finger separation surgery back in May, and in June we saw the end result of this journey with getting him some fingers...well separated fingers! Since then his hands have been serving him well. He was cautious at first, he didn't want to use his fingers separately and had no intentions on acting as if they were separated. The only big thing at first was that he didn't want to walk for fear of falling, and he was very careful not to hit his hands on anything. I will say that I am so impressed with his surgeon and the team in Boston. Cam's fingers look amazing, and the best part was that after the casts came off, besides having to put splints on his hands at night, there were no dressing changes, which I hear is very common with alot of other kiddos when they have their surgery. Not that it's a bad thing to have to have dressing changes, I'm just grateful that I didn't have to do that with Cam, because it looks painful and with a toddler I'm not sure that it's the most feasible. The splints lasted about 6 weeks, and then we were done. Now Cameron will use his fingers or at least his pointer with some activities, and is doing very well with his OT on the skills she works with him on. I'm always so humbled by his strength and courage. He doesn't know how amazing he is. None of the kiddos that face things like this realize the impact they make on others. Their ability to handle such hard circumstances is awe inspiring. Cameron is awe inspiring. He is so wonderful and brave. And now he is a crazy, funny, independent two year old!!!
Cameron turned two on August 15th. He celebrated with his friends and family at his very cool Elmo party. He even dressed up as Elmo. He was showered with lots of gifts and toys to last him until his next birthday. One of his very best friends, Stella, gave him an Elmo drum set, and because her mom is so creative they gave Cameron a fish. Dorthy in a tank to be exact, since Elmo has a fish, Cameron needed one too.....I couldn't have thanked Stella's mommy enough...(Ashley if you read this, that is sarcasm :) ). We still have Dorthy...somehow she is still alive and kicking...or swimming. Paul's parents even came in from Florida to be here to celebrate Cam's big day. It was alot of fun, and we felt very blessed to have so many people that love Cam come together to celebrate our sweet boy's big day.
Also in big news, we added the newest member of our family on August 23rd. That's right, Max Mclaurin Elliott came into the world weighing a whopping 7 lbs 12 oz and measuring 20.5 inches long. He was a big boy for being 3 weeks early. I had a scheduled c-section because of me being diagnosed with pre-eclampisa around 32 weeks. I was able to manage it fairly well, but around 37 weeks it can start getting worse more quickly so they decided it would be safest to do the c-section at 37 weeks. So that morning as I prayed for God to protect us, I was wheeled into the operating room and about 20 minutes later Max was here. He was doing great at first. He was given agar's of 9 and 10, but when they took him to the nursery to weigh him and clean him up he started having some trouble breathing. They put him under an oxygen hood, but later realized that he had something called RDS. It stands for respiratory distress syndrome. Something not too uncommon for c-section babies and babies born a little early. So Max had to be transferred to a hospital we were all to familiar with in Winston Salem called Brenners. This is the place that Cam was born and where we spent most of his first year. Not a place we were to excited about returning too. But Max needed something more than what our small town hospital could provide, so off we went. Max did very well there and after 6 days he was ready to come home. We left the hospital on August 31st. Paul's birthday and the day after Max had turned 1 week. It was a very good day all around. I was so excited to get home to see Cam who had been with my in-laws for the past four days, the longest I had ever been without him, and It was a happy reunion...for me at least. He seemed happy as could be playing with his YaYa and Grandaddy. Cameron meeting Max was a sweet sight, even though he wasn't too fond at first. He has slowly started to come around, and will even give Max a kiss now. I love looking at my two boys. My family is complete, and I feel so blessed to have Cameron and Max in my life. Just me and my three boys!
So what's coming up? Well at the end of October we will be heading back up to Boston to give Cam the rest of his fingers. October 30th Cam will go back for surgery again in what will hopefully be an uneventful but successful surgery to complete his finger separation. I would like to think that by now this would be routine. But it's not. It's surgery. It's traveling for surgery. It's keeping Cameron well so we don't have to cancel. It's travelling with two kids this time instead of just Cam. It's knowing that he will be in pain, and having my heart break when I have to hand him over to the surgeons. It's unfair. It's just unfair. But I know that God is in this. He is with us and will be with us even when I'm yelling at him because I'm scared and afraid. I know that God loves us, and as much as I'd like to blame God sometimes for the scary times in my life I've come to realize that those scary times have molded me. They have made me who I am now, and who I am grateful to be. Not that I was a bad person before, but the gift of Cameron is truly something that I am blessed to have and that I needed. What Paul and I both needed. I often think I could quite possibly be the most unlucky person in the world, because of the events that sometimes occur in my life. But then I am reminded that there is no way I can consider myself unlucky when I look around. Cameron and Max are two of the most amazing blessings. I just need to be reminded of that sometimes. This surgery does scare me. Surgery always scares me. I would do it for Cam a thousand times before having him go through this, but I can't. So I sit by his bed, I hold him, and I pray for him while he goes through it, and while he triumphs. But we do appreciate everyone prayers as we enter into this next month. Prayers for health, and positivity, and safety.
I promise I will try to do better on my updates. This two kid thing is going to take some getting used to but I'm sure things will be great and I will be able to make Cam's blog more of a priority for those of you that keep up with us this way. Thanks so much for reading and loving us. We are more appreciative than you will ever know.
Cameron turned two on August 15th. He celebrated with his friends and family at his very cool Elmo party. He even dressed up as Elmo. He was showered with lots of gifts and toys to last him until his next birthday. One of his very best friends, Stella, gave him an Elmo drum set, and because her mom is so creative they gave Cameron a fish. Dorthy in a tank to be exact, since Elmo has a fish, Cameron needed one too.....I couldn't have thanked Stella's mommy enough...(Ashley if you read this, that is sarcasm :) ). We still have Dorthy...somehow she is still alive and kicking...or swimming. Paul's parents even came in from Florida to be here to celebrate Cam's big day. It was alot of fun, and we felt very blessed to have so many people that love Cam come together to celebrate our sweet boy's big day.
Also in big news, we added the newest member of our family on August 23rd. That's right, Max Mclaurin Elliott came into the world weighing a whopping 7 lbs 12 oz and measuring 20.5 inches long. He was a big boy for being 3 weeks early. I had a scheduled c-section because of me being diagnosed with pre-eclampisa around 32 weeks. I was able to manage it fairly well, but around 37 weeks it can start getting worse more quickly so they decided it would be safest to do the c-section at 37 weeks. So that morning as I prayed for God to protect us, I was wheeled into the operating room and about 20 minutes later Max was here. He was doing great at first. He was given agar's of 9 and 10, but when they took him to the nursery to weigh him and clean him up he started having some trouble breathing. They put him under an oxygen hood, but later realized that he had something called RDS. It stands for respiratory distress syndrome. Something not too uncommon for c-section babies and babies born a little early. So Max had to be transferred to a hospital we were all to familiar with in Winston Salem called Brenners. This is the place that Cam was born and where we spent most of his first year. Not a place we were to excited about returning too. But Max needed something more than what our small town hospital could provide, so off we went. Max did very well there and after 6 days he was ready to come home. We left the hospital on August 31st. Paul's birthday and the day after Max had turned 1 week. It was a very good day all around. I was so excited to get home to see Cam who had been with my in-laws for the past four days, the longest I had ever been without him, and It was a happy reunion...for me at least. He seemed happy as could be playing with his YaYa and Grandaddy. Cameron meeting Max was a sweet sight, even though he wasn't too fond at first. He has slowly started to come around, and will even give Max a kiss now. I love looking at my two boys. My family is complete, and I feel so blessed to have Cameron and Max in my life. Just me and my three boys!
So what's coming up? Well at the end of October we will be heading back up to Boston to give Cam the rest of his fingers. October 30th Cam will go back for surgery again in what will hopefully be an uneventful but successful surgery to complete his finger separation. I would like to think that by now this would be routine. But it's not. It's surgery. It's traveling for surgery. It's keeping Cameron well so we don't have to cancel. It's travelling with two kids this time instead of just Cam. It's knowing that he will be in pain, and having my heart break when I have to hand him over to the surgeons. It's unfair. It's just unfair. But I know that God is in this. He is with us and will be with us even when I'm yelling at him because I'm scared and afraid. I know that God loves us, and as much as I'd like to blame God sometimes for the scary times in my life I've come to realize that those scary times have molded me. They have made me who I am now, and who I am grateful to be. Not that I was a bad person before, but the gift of Cameron is truly something that I am blessed to have and that I needed. What Paul and I both needed. I often think I could quite possibly be the most unlucky person in the world, because of the events that sometimes occur in my life. But then I am reminded that there is no way I can consider myself unlucky when I look around. Cameron and Max are two of the most amazing blessings. I just need to be reminded of that sometimes. This surgery does scare me. Surgery always scares me. I would do it for Cam a thousand times before having him go through this, but I can't. So I sit by his bed, I hold him, and I pray for him while he goes through it, and while he triumphs. But we do appreciate everyone prayers as we enter into this next month. Prayers for health, and positivity, and safety.
I promise I will try to do better on my updates. This two kid thing is going to take some getting used to but I'm sure things will be great and I will be able to make Cam's blog more of a priority for those of you that keep up with us this way. Thanks so much for reading and loving us. We are more appreciative than you will ever know.
Friday, June 8, 2012
We have 3 fingers and a thumb!
So May 14th, Cam became the new recipient of separated fingers. After a long 5.5 hours in the operating room, a mishap with the type of intubation they used, 14 hours in the ICU because he needed to remain intubated, and two hard, bright blue, Elmo casts later, we had one cranky Cam, but underneath those casts there were fingers. The surgeon said everything on the surgery end went wonderful. His finger separation went smooth, and they were able to give him a great outcome. Overall we spent 4 days in the hospital for this surgery, and then flew back home. I won't say that Cam was his sweet, silly self once we were home, but he quickly progressed back to his norm, and life with two large, hard, casts became easy.
Of course things don't always stay smooth sailing, because then that just wouldn't be our life......so the week before Cam was to head back to Boston for the cast removal he became ill. We thought he may have had a shunt malfunction, so we traveled to Winston to find out that it was just a stomach virus, and that it would resolve on its own. Over the next few days, his stomach virus seemed to disappear but he still had a poor appetite and didn't really want to eat, and for me that is the worst thing. I already feel that Cam is small, and even though he is healthy, when he eats it makes me feel better, but when he gets in those modes where he refuses food, or throws it up, I get anxious. So Friday I scheduled a swallow study for him, to make sure that he didn't have any issues with his esophagus. He fought tooth and nail through the study, and so how accurate it was is still up in the air, but what they did see was completley fine, and as of now his esophagus is still functioning fine. I worry about all of that because of his esophageal atresia repair he had when he was just a newborn, because unfortunately one of the things that can happen is that a stricture develops in the esophagus and it needs to be dilated. Not a huge deal, but still something I wasn't wanting to deal with, especially right before his scheduled cast removal. So luckily for now, no problems with the esophagus. Just one picky little boy. And to top all of this off, Saturday morning he woke up with a very runny nose, and a cough.
So Sunday finally gets here, and Cam and I prepare for this plane flight alone. He still has a yucky upper respiratory virus, but isn't too cranky.This was the first time I had flown alone with Cameron, and something in my mind told me that it would be just fine. I had this expectation that everything would go smooth, and that I would conquer this trip with no issues......BOY WAS I WRONG!!!!! We made it to the airport Sunday, Paul said his goodbyes, then Cam and I headed to check in. We made it through a very crowded security and to our gate just in time to board the plane. I decided that two carry on's would be easy to handle on my own, but that plus pushing Cam's stroller, plus having to hold him and fold the stroller at the base of the plane, started this flight off in an already frustrating mode. We got on the plane and sat in our window seat, squished between a large gentleman that sat in the middle and an older lady on the aisle seat that continuously asked me if Cam had whooping cough when he would cough. She was worried because she said her immune system was very weak, and his cough sounded very much like whooping cough to her. I assured her that he just had a cold and that there would be no way I would bring my toddler on a plane with whooping cough(some people really make me want to be violent, and I am not a violent person).
After sitting for about 10 minutes the plane begins to depart. We move about 20 feet and then the plane proceeds to pull back into the concourse. The pilot then comes over the speakers to say that there was a ton of air traffic over Washington DC and that we wouldn't be able to take off for an estimated 1 hr. 40 minutes. At this point Cam is already frustrated, we are super cramped, I have no room, my giant 7 month pregnant belly makes it difficult to maneuver, and I'm sweating something horrible. I almost started crying then, but held it together. I knew that I couldn't loose it yet. So luckily the plane only sat for an hour before deciding to leave again, and once we were in the air, Cam thankfully fell asleep. It was a very loud sleep, because his congestion didn't make an already tight upper airway and better, and so he did some serious snoring, but at least he wasn't crying!! He woke up about 30 minutes before we were landing in a horrible mood. He was hungry, so I somehow pulled a bottle together for him. He drank it down, and in about 10 minutes threw it all back up.....all. over. me. I was mortified. I had no way to help him, to help myself, to clean anything.....it was horrible. It was over with that....I let the tears fall. The man next to me asked if he could do anything, but he couldn't, and I was so frustrated that I wouldn't have accepted it anyway. Luckily we only had about 15 minutes left in the plane, so once we landed and got off, I put Cam in the stroller, ran to the restroom, semi cleaned myself up, and headed toward the gate to be picked up by some friends that we were staying with in Boston.
The rest of the trip was fine. Monday morning Cam got his casts off, we got fitted for his splints, and headed back to our friends to stay the night before our departure from Boston the next morning. Cam's new fingers looked really great, and I was excited that this first step to 10 fingers was finally over!!!!!! We had a wonderful flight home on Tuesday. The seat next to us on the plane stayed open, so we had alot more room, and Cam was much happier during this trip. It was not 100% comfortable for me, because being pregnant on a plane isn't the most fun ever, but with Cam being happy and no throw up, I will say it was 10,000 times better than the plane ride there.
We have been home three days, and Cam uses his fingers marvelously well. Almost like he's had three seperate fingers forever. We did take him to the peds this week, and he does have a sinus infection, but he seems to be handling it well, and hopefully his congestion will clear up here soon. They called from Boston this week to let us know that his next seperation surgery will be October 30th. So we will have an even older toddler and a newborn on the next trip......Are we crazy or what? :) Thanks for all the prayers and well wishes during Cam's surgery. We truley appreciate everyone that loves our sweet little boy, and are grateful for the support we recieve during these hectic times.
Of course things don't always stay smooth sailing, because then that just wouldn't be our life......so the week before Cam was to head back to Boston for the cast removal he became ill. We thought he may have had a shunt malfunction, so we traveled to Winston to find out that it was just a stomach virus, and that it would resolve on its own. Over the next few days, his stomach virus seemed to disappear but he still had a poor appetite and didn't really want to eat, and for me that is the worst thing. I already feel that Cam is small, and even though he is healthy, when he eats it makes me feel better, but when he gets in those modes where he refuses food, or throws it up, I get anxious. So Friday I scheduled a swallow study for him, to make sure that he didn't have any issues with his esophagus. He fought tooth and nail through the study, and so how accurate it was is still up in the air, but what they did see was completley fine, and as of now his esophagus is still functioning fine. I worry about all of that because of his esophageal atresia repair he had when he was just a newborn, because unfortunately one of the things that can happen is that a stricture develops in the esophagus and it needs to be dilated. Not a huge deal, but still something I wasn't wanting to deal with, especially right before his scheduled cast removal. So luckily for now, no problems with the esophagus. Just one picky little boy. And to top all of this off, Saturday morning he woke up with a very runny nose, and a cough.
So Sunday finally gets here, and Cam and I prepare for this plane flight alone. He still has a yucky upper respiratory virus, but isn't too cranky.This was the first time I had flown alone with Cameron, and something in my mind told me that it would be just fine. I had this expectation that everything would go smooth, and that I would conquer this trip with no issues......BOY WAS I WRONG!!!!! We made it to the airport Sunday, Paul said his goodbyes, then Cam and I headed to check in. We made it through a very crowded security and to our gate just in time to board the plane. I decided that two carry on's would be easy to handle on my own, but that plus pushing Cam's stroller, plus having to hold him and fold the stroller at the base of the plane, started this flight off in an already frustrating mode. We got on the plane and sat in our window seat, squished between a large gentleman that sat in the middle and an older lady on the aisle seat that continuously asked me if Cam had whooping cough when he would cough. She was worried because she said her immune system was very weak, and his cough sounded very much like whooping cough to her. I assured her that he just had a cold and that there would be no way I would bring my toddler on a plane with whooping cough(some people really make me want to be violent, and I am not a violent person).
After sitting for about 10 minutes the plane begins to depart. We move about 20 feet and then the plane proceeds to pull back into the concourse. The pilot then comes over the speakers to say that there was a ton of air traffic over Washington DC and that we wouldn't be able to take off for an estimated 1 hr. 40 minutes. At this point Cam is already frustrated, we are super cramped, I have no room, my giant 7 month pregnant belly makes it difficult to maneuver, and I'm sweating something horrible. I almost started crying then, but held it together. I knew that I couldn't loose it yet. So luckily the plane only sat for an hour before deciding to leave again, and once we were in the air, Cam thankfully fell asleep. It was a very loud sleep, because his congestion didn't make an already tight upper airway and better, and so he did some serious snoring, but at least he wasn't crying!! He woke up about 30 minutes before we were landing in a horrible mood. He was hungry, so I somehow pulled a bottle together for him. He drank it down, and in about 10 minutes threw it all back up.....all. over. me. I was mortified. I had no way to help him, to help myself, to clean anything.....it was horrible. It was over with that....I let the tears fall. The man next to me asked if he could do anything, but he couldn't, and I was so frustrated that I wouldn't have accepted it anyway. Luckily we only had about 15 minutes left in the plane, so once we landed and got off, I put Cam in the stroller, ran to the restroom, semi cleaned myself up, and headed toward the gate to be picked up by some friends that we were staying with in Boston.
The rest of the trip was fine. Monday morning Cam got his casts off, we got fitted for his splints, and headed back to our friends to stay the night before our departure from Boston the next morning. Cam's new fingers looked really great, and I was excited that this first step to 10 fingers was finally over!!!!!! We had a wonderful flight home on Tuesday. The seat next to us on the plane stayed open, so we had alot more room, and Cam was much happier during this trip. It was not 100% comfortable for me, because being pregnant on a plane isn't the most fun ever, but with Cam being happy and no throw up, I will say it was 10,000 times better than the plane ride there.
We have been home three days, and Cam uses his fingers marvelously well. Almost like he's had three seperate fingers forever. We did take him to the peds this week, and he does have a sinus infection, but he seems to be handling it well, and hopefully his congestion will clear up here soon. They called from Boston this week to let us know that his next seperation surgery will be October 30th. So we will have an even older toddler and a newborn on the next trip......Are we crazy or what? :) Thanks for all the prayers and well wishes during Cam's surgery. We truley appreciate everyone that loves our sweet little boy, and are grateful for the support we recieve during these hectic times.
Wednesday, May 2, 2012
It's getting close
Well it's almost time to head to Boston. Next Wednesday night we will pack up and head to Charlotte, where we will stay the night so that we can catch our 7:30 am flight up north! Then Friday we will spend the day doing all the fun pre-op appointments that precede surgery that will take place on Monday the 14th. I have alot of emotions streaming right now. Honestly, I'm grateful that this surgery is going to be behind us in less than two weeks, but at the same time I'm so anxious about handing my sweet boy over for yet another surgery. He has no idea that this is coming, and when he comes out of anesthesia, he will be so angry about not having access to his hands, and even though he will forgive me later on, in that very moment he will be mad at me, because I'm his mommy. I'm the one that is supposed to make his boo boo's all better, the one who is supposed to fix whatever isn't right. But for 3-4 weeks, he will be forced to wear these huge casts and he will have no idea why, and so he will only by default blame me. It's ok though. If I could go through this surgery for him....I would do it in a heartbeat, but since I can't, if the only thing I can do is be the one he blames, then I'll take it. I just wish there was a way to explain to toddlers that it will only be for a little while and that they knew what that meant.
I know that God takes special care of kiddos like Cam. He gives them a little something extra that makes them super strong and brave. I know that he also gives us mommies a little something extra too, because in my wildest dreams I wouldn't be strong enough to handle this. I wouldn't be able to hand my child over for surgery after surgery. I wouldn't be able to cope with the sadness that his journey sometimes brings. But sitting here 20 months and 8 surgeries later, I can tell you that it definitely isn't me. So I have no other explanation other than God. Although at times I get angry with him, and at times I question his plan, I know he is there, and that he is with Cameron, protecting him, and protecting my heart. It's always a battle with me when it's surgery time, on whether or not I'm going to decide that God isn't as loving as I once thought....because I become angry that our family has to go through this, that Cameron has to endure so much. But then we get to the surgery day, they take him away, I pray for hours until he returns, and then I get on my knees and I praise Jesus for getting my child through yet another procedure. I tell him that I love him and that I'm grateful for life, for Cam, for everything. I tell him I'm sorry I ever doubted his faithfulness. So now I pray a little differently. I pray that God will help me have strength to know that he is with Cam. To have faith that he is going to bring us through this, and know that he is our provider. I throw in a couple of prayers to make Cam strong and brave, and to bring him through the surgery safe and happy. But I know that it's important to not doubt so much, but to believe. Believe that God is with us always, and that Cameron's life is his, and he is going to prosper and love him, just as Paul and I do. So not only has Cameron taught me about the most important things in life, he has taught me that I wasn't as connected with God as I needed to be, and through this experience I am now growing. A long way to go, but on the way for sure!
I know that God takes special care of kiddos like Cam. He gives them a little something extra that makes them super strong and brave. I know that he also gives us mommies a little something extra too, because in my wildest dreams I wouldn't be strong enough to handle this. I wouldn't be able to hand my child over for surgery after surgery. I wouldn't be able to cope with the sadness that his journey sometimes brings. But sitting here 20 months and 8 surgeries later, I can tell you that it definitely isn't me. So I have no other explanation other than God. Although at times I get angry with him, and at times I question his plan, I know he is there, and that he is with Cameron, protecting him, and protecting my heart. It's always a battle with me when it's surgery time, on whether or not I'm going to decide that God isn't as loving as I once thought....because I become angry that our family has to go through this, that Cameron has to endure so much. But then we get to the surgery day, they take him away, I pray for hours until he returns, and then I get on my knees and I praise Jesus for getting my child through yet another procedure. I tell him that I love him and that I'm grateful for life, for Cam, for everything. I tell him I'm sorry I ever doubted his faithfulness. So now I pray a little differently. I pray that God will help me have strength to know that he is with Cam. To have faith that he is going to bring us through this, and know that he is our provider. I throw in a couple of prayers to make Cam strong and brave, and to bring him through the surgery safe and happy. But I know that it's important to not doubt so much, but to believe. Believe that God is with us always, and that Cameron's life is his, and he is going to prosper and love him, just as Paul and I do. So not only has Cameron taught me about the most important things in life, he has taught me that I wasn't as connected with God as I needed to be, and through this experience I am now growing. A long way to go, but on the way for sure!
Saturday, April 14, 2012
Time for an update!
So it's been awhile since I have updated this blog. I guess the time has just gotten away from me. Since my last post when Cam's shunt malfunctioned, we have had alot of new things happening. For starters, Cam got diagnosed with RSV about two weeks after he had surgery for his shunt. That put us in the hospital for three days(not so fun)but thankfully he started getting better pretty quickly and it didn't get too bad. We had a few good weeks, and then one day Cam started crying uncontrollably, something he never does, and so we took him to the Dr. and sure enough his ear drum had ruptured and he had a really bad ear infection. However, besides the thirty minutes of crying he handled his ear infection like a pro. He didn't skip a beat, instead he just smiled on through it and was happy as a clam. We even made a trip to Fayettville for Paul's grandma Mavis's 85th birthday because he was acting completely fine. Then the week after that, when he seemed to be all better we decided to go to Florida to visit Paul's family for Easter. We left the Thursday before Easter, and drove, getting us to the sunshine state around 2 am. It was an uneventful drive on Cameron's part, but I was miserable. Earlier that morning I had been to the Dr's myself only to discover that I too had an ear infection and a sinus infection. So the drive for me was really long. Thankfully the rest of the trip went well and I started feeling better pretty quickly.
Florida was alot of fun. Cam had never been, and it was nice to finally get the chance to take him without surgery keeping us from traveling. We took Cam to the ocean while we were there. He didn't mind sitting in the sand watching the water, but the minute the tide came in and the water splashed him, he was done....he screamed and cried until we took him far away from the ocean and put him in his little beach chair. It was really sad watching him look so scared. Maybe next beach trip will bring a better outcome! Other than the beach experience, he seemed to love Florida. He was surrounded by people oohhing and ahhing over him, and spoiled rotten by his YaYa and Grandaddy.
Since my last post we also announced the exciting news to our friends and family that we are expecting another baby!! Another boy in fact. We found out in December, but didn't tell many people until I was 12 weeks, and we didn't mass announce it until a few weeks ago. I have had alot of mixed feelings so far during this pregnancy. At first I was over the moon excited because I felt so blessed to have another baby inside of me. Then I was struck with fear. Fear of everything I had told myself I wouldn't be afraid of because I knew I could handle anything. Unfortunately that isn't how the mind works. And when I really processed that I was pregnant, I became overwhelmed with the fear that something would go wrong or that the baby wouldn't be healthy, or that the baby would have Apert syndrome.
I know that sounds horrible. I mean how horrible would it be if the baby did have Apert syndrome? The best thing that has ever happened to me, has Apert Syndrome so why would I be so worried that I would have another baby with the same thing? It's embarassing for me to admit, but it's how I felt. I love Cam with everything I am and I wouldn't change him for anything in the world, and I don't feel sorry that I have a child with special needs. I do however hate what Apert Syndrome means for Cam. Because for the rest of my childs life he will be faced with surgeries, with adversity, and with challenges that can make an already cruel world even crueler. So that is why having another child with Apert Syndrome is so terrifying. No parent wants for their child to go through pain and suffering, and unfortunately that comes along with Cam's journey, and even though I have accepted his future I hate the things he has to go through, and to think that another child would have to go through that is scary for me. So in the beginning I had alot of fear and anxiety.
I didn't want to go through the real invasive testing, but I knew that my anxiety couldn't be controlled with just the typical pre natal care that women usually receive when there isn't a suspected problem. I was told by many Dr's and genetic Dr's that our chances of having another baby with Apert Syndrome was pretty much zero, but when you have been through certain experiences your mind has a hard time getting around that, and for me it was going to take more than just the 18 week ultrasound. So at 11 weeks I went to a high risk Dr. who did a nuchal translucency screening, testing for chromosomal abnormalities and they did an ultrasound. Then I had an ultrasound at 14 weeks with my regular Ob, and then at 17 weeks I had the follow up ultrasound with the high risk Ob. All tests and all ultrasounds went great and we found out that Cam will have a little brother come September! We have decided to name him Max, and we couldn't be more excited about this new life that is on it's way.
As for Cam, he is doing great! He has had a hard time getting rid of his ear infection so we have been on antibiotics for a while now, but his spirit is still the same old happy Cam. He has learned so many new things, and impresses me everyday with something new that he can do. He loves Elmo, and could watch Elmo's version of I'm sexy and I know it, called I'm Elmo and I know it everyday. He isn't walking on his own just yet, but is standing and oh so close to taking off without mommy or daddy's hand! He has a smile that could make the darkest day turn bright, and he truly is the biggest blessing in the world. Unfortunately, our strand of surgeries is far from over and come May 14th Cam will go for his 9th operation. He will be getting his first finger separation surgery. I am ready for this to be over with, but at the same time surgery is scary, and I hate handing him over. I thought it would get easier the more often I had to do it, but it's always the same. Handing him over tears my heart into and until he is back in my arms I ache for him, and constantly worry while he is away. It's a horrible feeling handing him over, and the thought of it makes my palms sweat, but it has to be done, and those fingers aren't going to separate themselves:) So come May we will head back to Boston where Dr. Joseph Upton will give Cam some fingers, so please say a prayer for my sweet boy to stay well until then, and for a successful, non-eventful surgery.
I'm sure I will update again before we head off for this surgery, mostly so that I can remind everyone to pray for my little angel! I don't necessarily believe that the more people praying means the more God will listen, but I figure it sure as heck can't hurt!!! I think that is all of the updates we have going on for right now. I'm grateful for all of you that read this blog and that love my little boy. It makes a mamas heart thankful to know there are people out there lifting up her most prized possession in prayer and in thought! So thank you for listening and for praying.
Florida was alot of fun. Cam had never been, and it was nice to finally get the chance to take him without surgery keeping us from traveling. We took Cam to the ocean while we were there. He didn't mind sitting in the sand watching the water, but the minute the tide came in and the water splashed him, he was done....he screamed and cried until we took him far away from the ocean and put him in his little beach chair. It was really sad watching him look so scared. Maybe next beach trip will bring a better outcome! Other than the beach experience, he seemed to love Florida. He was surrounded by people oohhing and ahhing over him, and spoiled rotten by his YaYa and Grandaddy.
Since my last post we also announced the exciting news to our friends and family that we are expecting another baby!! Another boy in fact. We found out in December, but didn't tell many people until I was 12 weeks, and we didn't mass announce it until a few weeks ago. I have had alot of mixed feelings so far during this pregnancy. At first I was over the moon excited because I felt so blessed to have another baby inside of me. Then I was struck with fear. Fear of everything I had told myself I wouldn't be afraid of because I knew I could handle anything. Unfortunately that isn't how the mind works. And when I really processed that I was pregnant, I became overwhelmed with the fear that something would go wrong or that the baby wouldn't be healthy, or that the baby would have Apert syndrome.
I know that sounds horrible. I mean how horrible would it be if the baby did have Apert syndrome? The best thing that has ever happened to me, has Apert Syndrome so why would I be so worried that I would have another baby with the same thing? It's embarassing for me to admit, but it's how I felt. I love Cam with everything I am and I wouldn't change him for anything in the world, and I don't feel sorry that I have a child with special needs. I do however hate what Apert Syndrome means for Cam. Because for the rest of my childs life he will be faced with surgeries, with adversity, and with challenges that can make an already cruel world even crueler. So that is why having another child with Apert Syndrome is so terrifying. No parent wants for their child to go through pain and suffering, and unfortunately that comes along with Cam's journey, and even though I have accepted his future I hate the things he has to go through, and to think that another child would have to go through that is scary for me. So in the beginning I had alot of fear and anxiety.
I didn't want to go through the real invasive testing, but I knew that my anxiety couldn't be controlled with just the typical pre natal care that women usually receive when there isn't a suspected problem. I was told by many Dr's and genetic Dr's that our chances of having another baby with Apert Syndrome was pretty much zero, but when you have been through certain experiences your mind has a hard time getting around that, and for me it was going to take more than just the 18 week ultrasound. So at 11 weeks I went to a high risk Dr. who did a nuchal translucency screening, testing for chromosomal abnormalities and they did an ultrasound. Then I had an ultrasound at 14 weeks with my regular Ob, and then at 17 weeks I had the follow up ultrasound with the high risk Ob. All tests and all ultrasounds went great and we found out that Cam will have a little brother come September! We have decided to name him Max, and we couldn't be more excited about this new life that is on it's way.
As for Cam, he is doing great! He has had a hard time getting rid of his ear infection so we have been on antibiotics for a while now, but his spirit is still the same old happy Cam. He has learned so many new things, and impresses me everyday with something new that he can do. He loves Elmo, and could watch Elmo's version of I'm sexy and I know it, called I'm Elmo and I know it everyday. He isn't walking on his own just yet, but is standing and oh so close to taking off without mommy or daddy's hand! He has a smile that could make the darkest day turn bright, and he truly is the biggest blessing in the world. Unfortunately, our strand of surgeries is far from over and come May 14th Cam will go for his 9th operation. He will be getting his first finger separation surgery. I am ready for this to be over with, but at the same time surgery is scary, and I hate handing him over. I thought it would get easier the more often I had to do it, but it's always the same. Handing him over tears my heart into and until he is back in my arms I ache for him, and constantly worry while he is away. It's a horrible feeling handing him over, and the thought of it makes my palms sweat, but it has to be done, and those fingers aren't going to separate themselves:) So come May we will head back to Boston where Dr. Joseph Upton will give Cam some fingers, so please say a prayer for my sweet boy to stay well until then, and for a successful, non-eventful surgery.
I'm sure I will update again before we head off for this surgery, mostly so that I can remind everyone to pray for my little angel! I don't necessarily believe that the more people praying means the more God will listen, but I figure it sure as heck can't hurt!!! I think that is all of the updates we have going on for right now. I'm grateful for all of you that read this blog and that love my little boy. It makes a mamas heart thankful to know there are people out there lifting up her most prized possession in prayer and in thought! So thank you for listening and for praying.
Monday, February 13, 2012
Frustration, frustration, oh and grateful.
Cameron has a funny way of telling us what he wants or doesn't want. In fact this past weekend his shunt malfunctioned. Something his Dr's told us wasn't likely to happen for awhile because of the type of shunt he has. But if it's going to happen and be unlikely, then Cameron is the kid it will happen with! So anyway, Thursday I became concerned that his soft spot(which is still open because of the way his bones grow)was a little too full and bulgy to be normal. Sometimes in kids with shunts, their soft spots can become hard and full if they are constipated, or really upset, but when they are still and upright the soft spot should be nice and smooth. His hadn't been for a few days, but I had thought he was constipated, but on Thursday when he had had plenty bowl movements and it was still hard I began to worry. I called our regular pediatrician who agreed to see us Friday morning. I took Cam in and the Dr. was going to press on his shunt valve, and when he does this it should push in and fill up, if it's working properly. He couldn't even get Cam's to push in. So we were told to head to Winston! I called Paul and he came home and we loaded our car with a few suitcases because we were sure we would be there for a while. We got to Winston around 1 pm, and went to the ER. They quickly with a CT scan discovered that Cam's shunt had pulled apart at a point in this neck where the tubing runs. This requires surgery to fix. So Cam was put on the books for Saturday morning surgery.
As a side note let me just mention how difficult this stay in Winston was. We felt like there were nothing but idiots working the day we went in. I'm sure that we were stressed and worried, but the lack of common sense that we felt was going on around us was increasingly upsetting. Maybe it's because we were spoiled back in November for Cams heart surgery in Boston, but some of the things were just unacceptable. OK that is my rant on the anger from the hospital.
Saturday morning came early and at 9 am we were down in the surgery holding room waiting for them to take my baby away for the 8th time. This doesn't get easier, no matter how small or big the surgery, I cry every time. I should be a pro at this, but something about them walking away with him knowing they are about to do brain surgery terrifies me! At about 10 am they took him back and Paul and I went to the waiting room.......to wait. About 45 minutes later the neurosurgeon comes out and tells us they are having a hard time intubating Cam. I told him they had the same difficult time in Boston and needed ENT to come intubate him with a special scope. The neurosurgeon said ENT had been called and were on there way, but that they were going to cancel the shunt revision until they could figure out what was going on with the intubation. This was very frustrating for us to hear, but we were also glad that they were working on getting the problem resolved. About an hour later the ENT finally comes and tells us they were easily able to intubate him and that nothing was wrong and that they were going to call and see if neurosurgery would come back and go ahead with the surgery since he was under. At this point Paul and I were both very frustrated with the events that had gone down, but told them to yes, please proceed with the surgery if he was already under.
They came back shortly and told us that they were able to proceed, and that someone would come and talk to us when the surgery was over. And about 45 minutes after that neurosurgery called on the waiting room phone and told us that all had gone as planned and that they had fixed his shunt and that we could see him in about 30 minutes. We were so relieved and grateful that his surgery was over and successful. But at the same time we were so frustrated and the events that had occurred to get to that point. It was a mix of emotions that I could care less to have to experience again. And as they said it would, 30 minutes later we were with our sweet Cam in the PACU, waiting to go back up to a regular room and begin the recovery process.
So, because of our eventful weekend, and the fact that Cam had anesthesia, we now have to postpone his hand surgery......YET AGAIN. I cannot put into words how I feel. I'm so sick thinking about how much effort I have put into not letting him get sick and keeping him well for this hand surgery to happen....and then this. Something I couldn't prevent, something that had to be fixed with surgery. This is why I started out by saying Cam has a funny way of telling us what he wants, because I'm pretty sure this is his way of telling us that he likes his fingers just the way they are, and he doesn't want surgery to fix them! I on the other hand was so excited about this surgery. So excited to start this process and hopefully have it over before the end of summer. But now it's looking like it may be April or May before we can get back on the books. Literally I am sick with frustration. I am overwhelmed, and I am so, so tired. But I am grateful. I'm grateful that I was able to catch his shunt malfunction before it affected his brain. I'm grateful that he was able to get it fixed and that he is doing ok. I'm grateful that even though we have to put of this hand surgery, one day Cam will have fingers, and we will be able to go to Boston to get them!
So for now we just wait. We wait for Boston to call and tell us when we will be able to come back up, and then we start preparing all over again! Cam is one funny baby I tell ya! Heck maybe now he will be walking all around before the hand surgery. That would be something to be excited about!! BTW...We got home yesterday afternoon from the hospital, and even though Cameron is super cranky and sore, he loves being home, and we love being home with him. His poor little hair was shaved where his incision site was made, so I for see his first hair cut in the near future! I really am grateful for my sweet Cam, and for being able to be the one that goes through all of these things with him. However, it doesn't take the frustrations and anger away that my child is the one that has to go through it. I still struggle when these things happen. I'm not sure if that will ever go away. I hope it does. I hope at some point in this journey I am able to look at these situations and not have that feeling of anger and sadness. But that I can just look at it as our life and what we do. Maybe one day. Maybe not. But for now we are home, Cam is good, and Boston is postponed. Say a prayer that it's able to be quickly rescheduled and that we don't have to wait too, too long for some tiny little fingers!
As a side note let me just mention how difficult this stay in Winston was. We felt like there were nothing but idiots working the day we went in. I'm sure that we were stressed and worried, but the lack of common sense that we felt was going on around us was increasingly upsetting. Maybe it's because we were spoiled back in November for Cams heart surgery in Boston, but some of the things were just unacceptable. OK that is my rant on the anger from the hospital.
Saturday morning came early and at 9 am we were down in the surgery holding room waiting for them to take my baby away for the 8th time. This doesn't get easier, no matter how small or big the surgery, I cry every time. I should be a pro at this, but something about them walking away with him knowing they are about to do brain surgery terrifies me! At about 10 am they took him back and Paul and I went to the waiting room.......to wait. About 45 minutes later the neurosurgeon comes out and tells us they are having a hard time intubating Cam. I told him they had the same difficult time in Boston and needed ENT to come intubate him with a special scope. The neurosurgeon said ENT had been called and were on there way, but that they were going to cancel the shunt revision until they could figure out what was going on with the intubation. This was very frustrating for us to hear, but we were also glad that they were working on getting the problem resolved. About an hour later the ENT finally comes and tells us they were easily able to intubate him and that nothing was wrong and that they were going to call and see if neurosurgery would come back and go ahead with the surgery since he was under. At this point Paul and I were both very frustrated with the events that had gone down, but told them to yes, please proceed with the surgery if he was already under.
They came back shortly and told us that they were able to proceed, and that someone would come and talk to us when the surgery was over. And about 45 minutes after that neurosurgery called on the waiting room phone and told us that all had gone as planned and that they had fixed his shunt and that we could see him in about 30 minutes. We were so relieved and grateful that his surgery was over and successful. But at the same time we were so frustrated and the events that had occurred to get to that point. It was a mix of emotions that I could care less to have to experience again. And as they said it would, 30 minutes later we were with our sweet Cam in the PACU, waiting to go back up to a regular room and begin the recovery process.
So, because of our eventful weekend, and the fact that Cam had anesthesia, we now have to postpone his hand surgery......YET AGAIN. I cannot put into words how I feel. I'm so sick thinking about how much effort I have put into not letting him get sick and keeping him well for this hand surgery to happen....and then this. Something I couldn't prevent, something that had to be fixed with surgery. This is why I started out by saying Cam has a funny way of telling us what he wants, because I'm pretty sure this is his way of telling us that he likes his fingers just the way they are, and he doesn't want surgery to fix them! I on the other hand was so excited about this surgery. So excited to start this process and hopefully have it over before the end of summer. But now it's looking like it may be April or May before we can get back on the books. Literally I am sick with frustration. I am overwhelmed, and I am so, so tired. But I am grateful. I'm grateful that I was able to catch his shunt malfunction before it affected his brain. I'm grateful that he was able to get it fixed and that he is doing ok. I'm grateful that even though we have to put of this hand surgery, one day Cam will have fingers, and we will be able to go to Boston to get them!
So for now we just wait. We wait for Boston to call and tell us when we will be able to come back up, and then we start preparing all over again! Cam is one funny baby I tell ya! Heck maybe now he will be walking all around before the hand surgery. That would be something to be excited about!! BTW...We got home yesterday afternoon from the hospital, and even though Cameron is super cranky and sore, he loves being home, and we love being home with him. His poor little hair was shaved where his incision site was made, so I for see his first hair cut in the near future! I really am grateful for my sweet Cam, and for being able to be the one that goes through all of these things with him. However, it doesn't take the frustrations and anger away that my child is the one that has to go through it. I still struggle when these things happen. I'm not sure if that will ever go away. I hope it does. I hope at some point in this journey I am able to look at these situations and not have that feeling of anger and sadness. But that I can just look at it as our life and what we do. Maybe one day. Maybe not. But for now we are home, Cam is good, and Boston is postponed. Say a prayer that it's able to be quickly rescheduled and that we don't have to wait too, too long for some tiny little fingers!
Monday, January 2, 2012
It's been awhile...and alot has happened!!!
So since my last post....We have been through a major surgery, celebrated two holidays, I had a birthday, and We rang in the New Year...ALOT! Now that it's 2012 and we are supposed to make resolutions...one of mine was to keep up with my blog a little better. I mean I really do love this blog. It's kind of like my journal, only public, but non-the-less it's my outreach to vent my feelings and to keep everyone updated on the various happenings of sweet Cam.
So first off...THE BIG HEART SURGERY:
We arrived in Boston on Tuesday the night before all of his pre-op, we got checked into the place we were staying and played with cam until it was time for bed. Then we got up super super early to head to the hospital to start all of the pre-op stuff. It started off with blood work, some x-rays, then a sedated echo. For all of those things Cam was so good. He behaved like a champ, and was super sweet with all the nurses. Then after his echo, we were supposed to meet with his Surgeon and the Cardiologist for the first time. It was very intimidating meeting the Cardiac Surgeon...the person that was going to be stopping my child's heart to then repair it, to then start his heart back up again...it seemed unreal to me that there was an actual person that could do this. But sure enough he was there....Dr. Frank Pigula, one of Boston Children's most expertise surgeons. He was so kind. He talked to me very calmly and told me that he was going to take great care of my Cam. He told me that everything would be great...I was in tears during this entire conversation of course, but his tone and his assurance helped ease my mind. Then we waited around another few hours to finally meet the Cardiologist...another saint...Dr. Peter Lang. This man is so funny. He was cracking me up, while at the same time explaining to me what Cam's heart looked like and what will happen once he has the surgery. He was great. I felt so confident in this amazing team. Then after an all day long run of appointments we were finally able to leave with a return time to the hospital for 6 am the next morning.
Surgery Day....was really, really hard. I watched them sedate my precious child, and then I watched them wheel him away in his bed....It was so hard for me to let him go, they had to force me to place him on the bed, and even then it was more like them taking him out of my arms...I just couldn't let go. As we watched him go down the hallway, all I could think was that this could be the last time that I could see my baby alive. They are going to stop his heart and what if they can't start it back? NO mother should ever have to experience that feeling...but so many do. I met tons of moms just like me, waiting in the Cardiac waiting area for their child to come back alive. IT's not Fair. It's torture, and it's pain, and it's the most amazing thing all at the same time. Because it's you loving someone so much that when you even think about the thought of them not being there, you don't want to live yourself. That is beautiful to me.
Cam went into surgery at 7:30 am and Dr. Pigula was out talking to us by 1pm. We got to see him for the first time after surgery around 2. IT was horrible. He was laying there, intubated, white, knocked out! But he also looked really good for just having open heart surgery. He had two tubes coming out of his chest draining the blood from his chest cavity, and he had a catheter to drain his urine, and he had a ton of wires everywhere that were hooked to about 5 different monitors. Very overwhelming. The nurses and Dr's assured us that everything had gone great and expected him to make a great recovery. And that is just what he did. By day 6 post op, we were being discharged from the hospital!! Cam did wonderfully well, and his heart looked great! We had a follow up with the Cardiologist in Boston on Friday, and then headed home that night. It was the greatest feeling to be going home with our sweet boy knowing that this terrifying surgery was behind us.
We made it home the Sunday before Thanksgiving. So we got to spend Thanksgiving with family and then we decorated for Christmas! Christmas came and we celebrated at our home this year with all of our family, and it was wonderful. Cam's recovery was very fast, and now you can't even tell he had a major heart surgery unless you saw his scar that runs down the center of his chest. When we get ready for bath time he always rubs his hand up and down on the scar, and I make sure to tell him how brave he was to get that cool scar, and how proud I am of him! I'm sure he has no clue what I am talking about, but one of these days he will!!
Now that it's 2012, I look forward to a great year filled with love and laughter and being grateful for the amazing blessings that the Lord has given my family. Cameron is so wonderful and God, he knew what he was doing putting that little boy in my life. And although God and I have had our issues, and I've been really, really, angry with him, I know that at the end of the day, he doesn't love me any less! My iniquities are big, but God's mercy and grace are so much bigger, and this year I feel my heart and my soul yearning to grow closer to the one that loves me no matter what! I know that I will face more triumphs, but I pray that I can handle them just as I've handled the ones before. Love and Life....My new motto....oh and Happy 2012 everyone!!
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