Just a quick update! It seems that Elijah is gaining weight! He is around 14lbs 9oz. He is eating a ton and pulling himself up. He loves cruising on furniture and hates sitting still. I am a little concerned that he isn't verbalizing quite like he should, but I am hoping it's just because all of his energy is going toward being physical. Noah loves the new mobile Elijah. Noah wants to play with him but doesn't quite understand that Elijah is still a baby and needs to be handled gently. It's quite an adventure at our house.
On a completely different topic, Dion and I have decided that it is time to get healthy. We have committed to a three week diet (no carbs, sugar, or alchohol). Ugh. I am seriously testing my self control. It's so easy to justify stuffing your mouth with comfort food when you have a child that is sick. You are in the hospital all day, and that candy bar is calling your name... you think, eh, my son is sick. I'm stressed and tired. I DESERVE that candy bar. Yeah... Substitute "candy bar" for anything- cheeseburger, ice cream, french fries...and you get an unhealthy mom and dad. I need to clean out my system and reestablish my eating habits. Not to mention my over all lack of self control. I have yet to figure out how to fit a work out into my schedule, the least I can do is nourish my body in a healthy manner. So here we are, five days into our plan, and man oh man how I would love a big, fat, juicy cheeseburger...
Friday, January 18, 2013
Sunday, January 6, 2013
Cardiologist Update
Elijah had his cardiologist appointment on Friday, the day after being discharged from CHLA. Overall, things look positive. The card was pleased with his heart function and described it as "low-normal." He categorized Elijah's heart function as "low" at the last few appointments. Elijah's heart is larger than it should be but Dr. Sklansky wasn't particularly concerned. He continues to see reverse blood flow through his PA which contradicts what the doctor at CHLA saw. If you remember from my last post, I was concerned about Elijah not having the artery that leads to his left arm. The card wasn't particularly bothered by this. He said that it used to be routine to sacrifice this artery during the Norwood and although it can cause growth issues in his left arm, it shouldn't be anything drastic. We are still going to follow up with the surgeon before his Fontan in a year or two. The best news was that we have no procedures scheduled and we have six weeks until the next cardiologist appointment. I realized that it is only two additional weeks between appointments, but man I find it exciting. The goal now is to get him to gain weight. Grow baby grow!
Oh, and not only is our little guy pulling himself up and standing, but he is finally crawling! Yeah! He gets a little pissy after a while, but he is doing it! He is still recovery from the hospital stay and we are back to getting up with him several times a night. We are both tired and I am a little worried about what the upcoming week will bring. He isn't eating like he should be and that stresses me out a bit. Dion doesn't worry about his eating, but I do. I worry about everything.
On another front, winter break ends today. I can't help but be a little sad. It has been really nice hanging out with my boys over the break. Monica went back to Alaska, so we will be having new people watch Elijah. I can't help but be a little nervous about this transition. I know that he will be fine and I trust the people who will be with him, but Monica was such a comfort and I will miss that. She loved him as if he were her own. You can't pay people to do that. We were really blessed to have her stay with us as long as she did.
Oh, and not only is our little guy pulling himself up and standing, but he is finally crawling! Yeah! He gets a little pissy after a while, but he is doing it! He is still recovery from the hospital stay and we are back to getting up with him several times a night. We are both tired and I am a little worried about what the upcoming week will bring. He isn't eating like he should be and that stresses me out a bit. Dion doesn't worry about his eating, but I do. I worry about everything.
On another front, winter break ends today. I can't help but be a little sad. It has been really nice hanging out with my boys over the break. Monica went back to Alaska, so we will be having new people watch Elijah. I can't help but be a little nervous about this transition. I know that he will be fine and I trust the people who will be with him, but Monica was such a comfort and I will miss that. She loved him as if he were her own. You can't pay people to do that. We were really blessed to have her stay with us as long as she did.
Thursday, January 3, 2013
Cath Results
After only one night in the hospital, Elijah was discharged. We are so happy to have only spent one night and not needed further interventions. He had his cath yesterday and while the procedure went well, the results are... not good and not bad. They were able to coil some of the collateral arteries in his left lung. They expected to see better blood flow to his upper left lung after they placed the coils and yet there is still compromised flow. They were not able plug all of the collaterals.
The blood flow through his PA looks a little improved and the arch narrowing was not an issue. However, they discovered that he does not have the artery that leads to his left arm. His body has compensated for this by created more collateral arteries to supply blood. This could be an issue as he gets older and may/may not effect growth in that arm. It could cause issues as an adult when using his left arm. His body will be forced to "steal" blood from his brain in order to operate his left arm. This is the first we have heard of any of this and it was a little shocking. We hope to explore ways to address this at his next surgery. On a good note, it seems his his left diaphragm may be re-engaging. His breathing is looking better as well. We have an appointment with his cardiologist tomorrow and we will see what he says.
The blood flow through his PA looks a little improved and the arch narrowing was not an issue. However, they discovered that he does not have the artery that leads to his left arm. His body has compensated for this by created more collateral arteries to supply blood. This could be an issue as he gets older and may/may not effect growth in that arm. It could cause issues as an adult when using his left arm. His body will be forced to "steal" blood from his brain in order to operate his left arm. This is the first we have heard of any of this and it was a little shocking. We hope to explore ways to address this at his next surgery. On a good note, it seems his his left diaphragm may be re-engaging. His breathing is looking better as well. We have an appointment with his cardiologist tomorrow and we will see what he says.
Tuesday, January 1, 2013
Cath Tomorrow...
Tomorrow Elijah will be having another cath. They have flown in special equipment for the procedure and they have already prepared me for a long day. I have such a conflict of emotions. On one hand I am excited to get this done and over with and have him "fixed". On the other hand, I am apprehensive and scared. We have rescheduled several times already because of illness. Finally both he and Noah are well and all of the pieces are in place. Yet I am still dreading tomorrow.
They will be trying to "plug" all of his collateral arteries, adjust the blood flow through his PA, and examine and possibly stent his arch. Both the nurse and doctor have told me it is incredibly tedious and time consuming. Please keep him in your thoughts and prayers tomorrow.
They will be trying to "plug" all of his collateral arteries, adjust the blood flow through his PA, and examine and possibly stent his arch. Both the nurse and doctor have told me it is incredibly tedious and time consuming. Please keep him in your thoughts and prayers tomorrow.
Friday, December 21, 2012
Noah is 3yrs old!!!
December 19th was Noah's 3rd birthday. Can you believe that my little beau is already 3? I swear, becoming a parent has made me truly recognize the value of time. When they say "time flies," they weren't kidding. It seems like yesterday, I was holding a colicky baby in the glider rocking back and forth, back and forth. Now he is this independent little guy who loves to help his baby brother and is truly a light in our house. You can't help but smile when Noah is around.
Noah has been such an amazing trooper through this last year. Despite all of the changes and the adjustments, Noah remains loving and happy. I marvel at his ability, at such a young age, to go with the flow and manage all of the changes to his life. He deserved a special day for his birthday. So... we went to Disneyland!
Although the trip didn't go quite as planning because of all of the rain, we still managed to have a great time. Elijah also really enjoyed the trip. I was fairly apprehensive taking him with us, but he did great! It was normal. It was a normal family trip. It's what normal people, with normal babies do. It was awsome.
Noah has been such an amazing trooper through this last year. Despite all of the changes and the adjustments, Noah remains loving and happy. I marvel at his ability, at such a young age, to go with the flow and manage all of the changes to his life. He deserved a special day for his birthday. So... we went to Disneyland!
Although the trip didn't go quite as planning because of all of the rain, we still managed to have a great time. Elijah also really enjoyed the trip. I was fairly apprehensive taking him with us, but he did great! It was normal. It was a normal family trip. It's what normal people, with normal babies do. It was awsome.
Monday, November 26, 2012
Cardio Appt Today
Elijah had his cardiologist appointment today. The doctor was pleased with his weight gain and said that Elijah was actually in the 10th percentile for height, although he is well below the second percentile for weight. His lungs look better on the xray and we are going to try to scale back on his lasix dosage. Elijah is still showing narrowing in his arch and the blood is flowing the wrong direction through his PA. This can't be fixed until he has his cath and they address the collateral arteries.
All in all it was a good appointment. He was supposed to have a cath tomorrow, but he has been ill. Although he is doing really well and doesn't seem to have the cold anymore, the surgeon wants him to be symptom free for 2-3 weeks before doing the cath. They are looking to reschedule it for January. I'm a little apprehensive because with Noah around, I'm not sure if Elijah will be symptom free for that long and at the right time. It seems that we are constantly battling some little bug in our house. I guess that's what we get for having a preschooler in the house!
All in all it was a good appointment. He was supposed to have a cath tomorrow, but he has been ill. Although he is doing really well and doesn't seem to have the cold anymore, the surgeon wants him to be symptom free for 2-3 weeks before doing the cath. They are looking to reschedule it for January. I'm a little apprehensive because with Noah around, I'm not sure if Elijah will be symptom free for that long and at the right time. It seems that we are constantly battling some little bug in our house. I guess that's what we get for having a preschooler in the house!
Wednesday, November 21, 2012
Thankful on Thanksgiving...
It's the night before Thanksgiving and I can't help but reflect on what I have to be thankful for. First and foremost I am thankful for my amazing husband. We have endured things I would not wish on my worst enemy and yet when I look at him, I still see the man I fell in love with. I still think of him as my partner, my lover, my friend. I am thankful for my boys. The light they possess inside them is bright and shines freely. They too have been to hell and back and yet our house is filled with laughter and squeals. Looking at them, you would have no idea what they have seen and experienced.
I have to mention family when I contemplate my blessings. Both sides of the family have been amazing supports. We have had family members come to the hospital when Elijah has been admitted to keep us company. We have had family pay for Dion and I to get away for a few nights for some much needed sleep and time together. Family has come and watched the boys so that we could go on a date or attend a friend's babyshower. Family has committed to watching our fragile little guy every day for months in order to give us peace of mind and ensure our baby is safe. Family has watched Noah daily during hospitalizations and dealt with all of his emotions and fears. Family has stuck with us through this all and been there to stand tall when we were falling, there to hear us as we talked about our frustrations and struggles, there to wipe the tears away or just say that they understood.
Our friends have also been by our side through all of this. They have brought us meals, sat with us, and held our hands as they took our little guy back for yet another surgery. They call to check in and try to find ways to help. Our friends have spent hours just sitting and waiting. Sitting and waiting. They have become family.
There are two organizations that I must also mention. Sisters by Heart is a group that was formed to support newly diagnosed families. They are an amazing group of women that were there for me. They answered questions and guided me in the right direction. They are a great source of information and comfort.
Children's Hospital... they saved my child's life. Do I really need to say anything else? Their amazing doctors and nurses saved my child's life. While they saved his life, they saved our sanity. They are perhaps the most empathetic and kind people I have ever met. I will forever be indebted to them.
Dr. Sklansky is our little guy's cardiologist. I have no words to describe this man. I have never met a doctor who would call on the weekend to check on a patient or call me after a doctor's appointment I was unable to attend to explain what happened and answer any of my questions. I can email him day or night and he will get back to me. He continues to fight for Elijah and I am forever grateful. He is assisted by a nurse named Ashley. She gave me her cell number to call or text any time. When Elijah was in the very fragile stage between his first and second surgery, we were in contact daily. She was patient and kind. She kept me sane. She kept me moving forward in a time when I just wanted to quit. If she didn't have the answers, she found them.
All of this to say that we are blessed. Incredibly blessed.
I have to mention family when I contemplate my blessings. Both sides of the family have been amazing supports. We have had family members come to the hospital when Elijah has been admitted to keep us company. We have had family pay for Dion and I to get away for a few nights for some much needed sleep and time together. Family has come and watched the boys so that we could go on a date or attend a friend's babyshower. Family has committed to watching our fragile little guy every day for months in order to give us peace of mind and ensure our baby is safe. Family has watched Noah daily during hospitalizations and dealt with all of his emotions and fears. Family has stuck with us through this all and been there to stand tall when we were falling, there to hear us as we talked about our frustrations and struggles, there to wipe the tears away or just say that they understood.
Our friends have also been by our side through all of this. They have brought us meals, sat with us, and held our hands as they took our little guy back for yet another surgery. They call to check in and try to find ways to help. Our friends have spent hours just sitting and waiting. Sitting and waiting. They have become family.
There are two organizations that I must also mention. Sisters by Heart is a group that was formed to support newly diagnosed families. They are an amazing group of women that were there for me. They answered questions and guided me in the right direction. They are a great source of information and comfort.
Children's Hospital... they saved my child's life. Do I really need to say anything else? Their amazing doctors and nurses saved my child's life. While they saved his life, they saved our sanity. They are perhaps the most empathetic and kind people I have ever met. I will forever be indebted to them.
Dr. Sklansky is our little guy's cardiologist. I have no words to describe this man. I have never met a doctor who would call on the weekend to check on a patient or call me after a doctor's appointment I was unable to attend to explain what happened and answer any of my questions. I can email him day or night and he will get back to me. He continues to fight for Elijah and I am forever grateful. He is assisted by a nurse named Ashley. She gave me her cell number to call or text any time. When Elijah was in the very fragile stage between his first and second surgery, we were in contact daily. She was patient and kind. She kept me sane. She kept me moving forward in a time when I just wanted to quit. If she didn't have the answers, she found them.
All of this to say that we are blessed. Incredibly blessed.
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