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.
Tuesday, January 1, 2013
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.
Saturday, November 17, 2012
13lbs 4oz!!!!
That's right folks! I'm now doing my happy dance! After a full month of absolutely no weight gain, our little guy is finally putting on some weight! I'm hoping this is enough to convince his cardiologist that he doesn't need a g-tube.
Friday, November 2, 2012
12lbs 6 oz and 7.5 Months Old
Elijah had his cardiologist appointment this last Tuesday. He has not gained even once ounce since last month. This is beyond frustrating. His doctor brought up the idea of a G-tube, but said that we still had a little time to work with Elijah before we would have to take action. After talking with the dieticians at UCLA, we are now adding oil to Elijah's bottles and fortifying with extra formula at night. He is also eating baby food now. It's frustrating because he eats what a typical 7 month old would eat. But he doesn't gain any weight. His body works so hard that he just burns everything we put into him. He can't eat more because his body can't handle more.
We had to cancel his cath that was scheduled for next week because he has come down with a cold. So far he has handled the cold well, and is one happy baby. The doctor also said that he isn't getting any blood flow through the PA that has the stent and that he still has decreased heart function (it isn't beating as it should). But he was happy to report that it hasn't gotten any worse. As of now, Elijah will have to go in for another cath at the end of this month and hopefully they will be able to address some of these issues at that time.
On another note, the boys had a good Halloween. Noah had a fabulous time trick-or-treating, but the baby was asleep and unable to join us. I added some pictures to commemorate the evening!
We had to cancel his cath that was scheduled for next week because he has come down with a cold. So far he has handled the cold well, and is one happy baby. The doctor also said that he isn't getting any blood flow through the PA that has the stent and that he still has decreased heart function (it isn't beating as it should). But he was happy to report that it hasn't gotten any worse. As of now, Elijah will have to go in for another cath at the end of this month and hopefully they will be able to address some of these issues at that time.
On another note, the boys had a good Halloween. Noah had a fabulous time trick-or-treating, but the baby was asleep and unable to join us. I added some pictures to commemorate the evening!
Saturday, October 20, 2012
Small Update...
Elijah is scheduled to have his next cath November 6th. He has been doing well. Although he is still only 12lbs, he is one happy camper. He still doesn't sleep through the night. I think Dion and I have just resigned ourselves to the fact that it is going to be a long time before we get any real sleep. We have given him our bedroom. Dion sleeps on the couch and I had been sleeping on a small blow up mattress on the floor of our living room. I couldn't handle it anymore and now I am using the mother of all blow up mattresses, thanks to Tren. You would not believe this thing. It is incredible and it is huge!!! Blesses sleep here I come!
On another note, Noah brought home a cold and has infected all of us except Dion. Elijah was the only one that was throwing up. Noah has had cold symptoms and informed me that his nose was broken and he needs a new one. If only it were that easy!
On another note, Noah brought home a cold and has infected all of us except Dion. Elijah was the only one that was throwing up. Noah has had cold symptoms and informed me that his nose was broken and he needs a new one. If only it were that easy!
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