Saturday, February 1, 2014
Lots of catching up to do
So many things to report that took place in 2013. February is Heart Month. So my goal for this month is to update my blog with everything that took place in 2013. Dealing with grief, celebrating Alyssa's life, doing things in her memory, etc. The list is long. She continues to be our blessing even from way up in Heaven. More to come..... In the meantime, I challenge each of my readers to do one thing to raise awareness about Congenital Heart Defects. Post a picture, share a blog or website, learn about CHD's. CHD research still continues to be grossly underfunded even though it is the #1 birth defect and leading cause of infant death in the United States.
Thursday, February 7, 2013
First day of CHD Awareness Week
Today is the first day of CHD Awareness week. Alyssa's big sister, Addison went to school wearing a red heart necklace that we wrote Alyssa's name on and also wrote CHD Awareness on the other side. She was decked out in heart (shirt, headband, and necklace) and sported her Alyssa bracelet on a clevice hook since it's to big for her wrist. So glad that she likes talking about Alyssa as much as I do and she likes to share her story with others. We have something up our sleeve that we are hoping to get started this week as our little way of spreading awareness for congenital heart defects and honoring our sweet Alyssa. More to come on that later....................:)
In the meantime, I'll share with you a little story about another little girl named Addison and a special stuffed zebra.
This is a sweet little girl named Addie. She is pretty special, her and her family are part of the support group I joined when I was pregnant with Alyssa. It's called Help-A-Heart. Let me tell you a little story.....the zebra in the picture is pretty special too. Santa didn't forget Alyssa in 2012 and he left us this zebra with a note to Addison and Connor that said even though Alyssa can't be with us on Christmas, he didn't want them to think that he forgot her, so he brought her this zebra. He asked that we give this zebra in memory of Alyssa to another heart baby that needed something to cuddle with during their heart journey. At that time, we thought we'd just donate the zebra to the hospital and ask them to give it to heart baby. But we haven't gotten back to the hospital just yet, and now I know why. This zebra wasn't meant for any baby, it was meant for Addie. I've met Addie several times at our support group and she is always full of smiles. Addie went in for heart surgery at U of I Childrens Hospital on Jan 9. They got shocked with a new diagnosis once there and her heart condition was changed to atrioventricular canal defect and tetralogy of fallot. While I was staying updated on Addie's progress through her CaringBridge blog, it hit me like a ton of bricks. Alyssa's zebra wasn't meant for any baby, it was meant for Addie. I messaged her mom and got her address and sent them a little care package with a letter explaining the meaning of the zebra. When Emily (Addison's mom) received the package this is what she wrote me "Got Addie's package today, we love it! Before I had even read the letter you sent I told Addie that the zebra was from a very special angel and that we should name it Alyssa after her. Then I read your letter and cried reading how special the gift is. Your love and kindness through the loss of your beautiful heart warrior is inspiring to me. Thank you for such a treasured gift! And I love your Addison's note! So sweet. You have done a great job with your children". Tears of happiness right there. After some scary situations and some rough patches, Addie finally made it home after about a month long stay in the hospital. Her mommy was kind enough to share some pictures of her loving up on her special zebra. Fight on Addie, you are one special little girl!
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Thank you to Addie's mommy for allowing me to share this story and pictures of your sweet heart warrior on my blog.
In the meantime, I'll share with you a little story about another little girl named Addison and a special stuffed zebra.
This is a sweet little girl named Addie. She is pretty special, her and her family are part of the support group I joined when I was pregnant with Alyssa. It's called Help-A-Heart. Let me tell you a little story.....the zebra in the picture is pretty special too. Santa didn't forget Alyssa in 2012 and he left us this zebra with a note to Addison and Connor that said even though Alyssa can't be with us on Christmas, he didn't want them to think that he forgot her, so he brought her this zebra. He asked that we give this zebra in memory of Alyssa to another heart baby that needed something to cuddle with during their heart journey. At that time, we thought we'd just donate the zebra to the hospital and ask them to give it to heart baby. But we haven't gotten back to the hospital just yet, and now I know why. This zebra wasn't meant for any baby, it was meant for Addie. I've met Addie several times at our support group and she is always full of smiles. Addie went in for heart surgery at U of I Childrens Hospital on Jan 9. They got shocked with a new diagnosis once there and her heart condition was changed to atrioventricular canal defect and tetralogy of fallot. While I was staying updated on Addie's progress through her CaringBridge blog, it hit me like a ton of bricks. Alyssa's zebra wasn't meant for any baby, it was meant for Addie. I messaged her mom and got her address and sent them a little care package with a letter explaining the meaning of the zebra. When Emily (Addison's mom) received the package this is what she wrote me "Got Addie's package today, we love it! Before I had even read the letter you sent I told Addie that the zebra was from a very special angel and that we should name it Alyssa after her. Then I read your letter and cried reading how special the gift is. Your love and kindness through the loss of your beautiful heart warrior is inspiring to me. Thank you for such a treasured gift! And I love your Addison's note! So sweet. You have done a great job with your children". Tears of happiness right there. After some scary situations and some rough patches, Addie finally made it home after about a month long stay in the hospital. Her mommy was kind enough to share some pictures of her loving up on her special zebra. Fight on Addie, you are one special little girl!
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Monday, February 4, 2013
Alyssa Bracelets
As a way to honor our daughter's memory and give back in her name, we decided to sell these bracelets in order to raise money for causes / needs close to our hearts. We have been selling them for $4 a piece and all the profits are being given away. More on that below:
On the late morning of October 9th when we walked into the ECMO procedure room to see our baby girl and meet with the doctors, we noticed that there were two little stuffed animals placed under Alyssa's arms. We knew at that point that we were going to have to let go of Alyssa that day, it was just a matter of when. So when I saw the stuffed animals, I knew just where they would end up. One for big sister Addison and one for big brother Connor. It was the only physical gift that Alyssa will ever be able to give to her siblings. The emotional gifts she gave them are much more, but they wouldn't come to realize just how much she effected our lives and made such a difference until a little later. Alyssa was given a red beanie baby bear named Mistletoe, which we gave to Addison. And she also had a beanie squirrel, which we knew right away would belong to Connor. When making a comment about the stuffed animals, one of the nurses made a comment that sometimes it's hard to find cute ones and they are wishing and hoping for people to bring in donations when they get down to those final few stuffed animals that aren't very cute. That comment stuck in my head and an idea was born. After discussing it with the kids, we decided that we'd sell the bracelets that we were ordering and we would use the profits to buy some stuffed animals to donate to other babies and toddlers that are placed on ECMO. We have now purchased all the animals and placed them in a sealed container so they stay nice and clean. I haven't gotten up the courage to go back to the hospital yet to deliver the stuffed animals, but we will soon. And when we do, I'll be sure to post pictures and write a post about the experience.
Little did we know that we would sell way more bracelets than anticipated, which led us to the need to find another organization to donate money to in memory of Alyssa. We have chosen to give most of our bracelet money to the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome at Mayo Clinic in Rochester, MN. Here is a link to their great program:
http://mayoresearch.mayo.edu/mayo/research/hypoplastic-left-heart-syndrome/what-is-hypoplastic-left-heart-syndrome.cfm
Our plan is to make our donation sometime during CHD awareness week, which is February 7th - 14th.
While I was pregnant with Alyssa, I'd made brief contact with Julia Thebiay, the HLHS research coordinator for the Mayo Clinic. My original plan was for Alyssa to take part in a research study that would require a blood draw after birth (through her umbilical line, so no extra pokes) and also a blood draw from Chris and I. We were hoping to take part in the Genetics research program which would hopefully someday lead to answers for the many unanswered questions surrounding HLHS. Unfortunately, b/c Alyssa's time here on Earth was so short and in those 5 short days my mind was on other things, we never got the chance to take part in the study. It was a little over a month after Alyssa's passing that I finally contacted Julia again to let her know of Alyssa's passing and that we would no longer be able to take part in the research study. I also shared with her some of the additional heart defects that Alyssa was found to have (Right aortic arch with aberrant left subclavian artery and a complete vascular ring) and my concern for information that I had heard in regards to family members of patients with HLHS also having mild heart defects and not knowing. Julia kindly asked if it would be okay to share Alyssa's story with Dr Nelson and Dr Olsen, both cardiologists that are part of the HLHS research program. This was Thursday or Friday and she told me that she would be meeting with them on the following Monday morning and would love to share our story with them. I gave her permission and didn't think much more about it. Until Monday morning came around and I got a phone call from Julia (all previous contact had been through email). I was overjoyed to know that despite Alyssa's early departure from this life, she was still going to make a difference in the lives of others. Julia said that after talking with the cardiologists, they would like to ask us to be a part of a different research study that would allow our entire family to have echos done on our hearts free of charge. Up until that point, they only had families in this particular research study that the HLHS child was still living. But because of the uniqueness of Alyssa's heart, they accepted us into the study because they thought she could still make a difference and they could still learn from her. I had all of Alyssa's medical records sent to Mayo Clinic so that they could get as much information as possible on her heart to use for their research. And on January 20th, we made the trip to Rochester, MN so that the following day myself, my husband and our two oldest kiddos could have echos done on our hearts to rule out any underlying heart defects that may be linked to Alyssa's HLHS diagnosis. I'm happy to report that we came home with 4 healthy hearts. We also came home with a sense of belonging. We got to finally meet Julia Thebiay and she really is an amazing person. She made us feel welcome. There is one comment that she made that I will always hold dear. I pulled out a picture of Alyssa from my purse to show her and she asked if I would mind sending her a picture of Alyssa so that she could hang it up on their Wall of Fame / Wall of Hope. She said "I like to have pictures of all of our patients, it reminds us of what we are fighting for and gives us hope to find more answers". Did you see the part in that sentence that grabbed me by the heart strings....? She said "OUR patients". I said to her, "she should have been your patient, I wish she would have been". And she stopped me in my tracks and said "Alyssa IS our patient and she always will be. She may not be here physically but she is making a difference and I'd be honored to have her on our wall". This of course made the tears flow. Both tears of joy and tears of sadness. You see, they had never even met Alyssa, but they had already accepted her as their own, knowing that they would never get the privilege of meeting her. I pray that they are able to do great things with their research and hopefully find some answers to the many unknowns with HLHS. But like everything, it takes money to find answers and sadly CHD (congenital heart disease or defect) research is one of the most underfunded groups. So heartbreaking for the families of those 1 in 100 babies that are effected by a CHD every year. So because of the experience we were given from Mayo Clinic, that is why we choose to donate in memory of our little peanut, Alyssa, in hopes that one day the prognosis for these innocent babies will be better.
Here is the link to the Mayo Clinic HLHS blog: http://hlhsblog.mayoclinic.org/
On the most recent post, the lady in white laying with her sweet heart baby is a fellow heart mom that I've become acquainted with through Facebook. She makes hearts for other heart warriors and heart angels to place in a scrapbook to share with her little heart warrior when she is older. It is her way of showing her daughter when she gets older that she is not alone and she is not so different and many other children have walked in her difficult shoes. She is already forming a heart community connection for her daughter which I think is truly amazing and inspiring. Here is the heart she made for our sweet Alyssa. Here is her Facebook page: https://www.facebook.com/CeciliaVinjeAndFriends
And now I leave you with pictures that friends and family have shared with me of them wearing their Alyssa bracelets.
Little did we know that we would sell way more bracelets than anticipated, which led us to the need to find another organization to donate money to in memory of Alyssa. We have chosen to give most of our bracelet money to the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome at Mayo Clinic in Rochester, MN. Here is a link to their great program:
http://mayoresearch.mayo.edu/mayo/research/hypoplastic-left-heart-syndrome/what-is-hypoplastic-left-heart-syndrome.cfm
Our plan is to make our donation sometime during CHD awareness week, which is February 7th - 14th.
While I was pregnant with Alyssa, I'd made brief contact with Julia Thebiay, the HLHS research coordinator for the Mayo Clinic. My original plan was for Alyssa to take part in a research study that would require a blood draw after birth (through her umbilical line, so no extra pokes) and also a blood draw from Chris and I. We were hoping to take part in the Genetics research program which would hopefully someday lead to answers for the many unanswered questions surrounding HLHS. Unfortunately, b/c Alyssa's time here on Earth was so short and in those 5 short days my mind was on other things, we never got the chance to take part in the study. It was a little over a month after Alyssa's passing that I finally contacted Julia again to let her know of Alyssa's passing and that we would no longer be able to take part in the research study. I also shared with her some of the additional heart defects that Alyssa was found to have (Right aortic arch with aberrant left subclavian artery and a complete vascular ring) and my concern for information that I had heard in regards to family members of patients with HLHS also having mild heart defects and not knowing. Julia kindly asked if it would be okay to share Alyssa's story with Dr Nelson and Dr Olsen, both cardiologists that are part of the HLHS research program. This was Thursday or Friday and she told me that she would be meeting with them on the following Monday morning and would love to share our story with them. I gave her permission and didn't think much more about it. Until Monday morning came around and I got a phone call from Julia (all previous contact had been through email). I was overjoyed to know that despite Alyssa's early departure from this life, she was still going to make a difference in the lives of others. Julia said that after talking with the cardiologists, they would like to ask us to be a part of a different research study that would allow our entire family to have echos done on our hearts free of charge. Up until that point, they only had families in this particular research study that the HLHS child was still living. But because of the uniqueness of Alyssa's heart, they accepted us into the study because they thought she could still make a difference and they could still learn from her. I had all of Alyssa's medical records sent to Mayo Clinic so that they could get as much information as possible on her heart to use for their research. And on January 20th, we made the trip to Rochester, MN so that the following day myself, my husband and our two oldest kiddos could have echos done on our hearts to rule out any underlying heart defects that may be linked to Alyssa's HLHS diagnosis. I'm happy to report that we came home with 4 healthy hearts. We also came home with a sense of belonging. We got to finally meet Julia Thebiay and she really is an amazing person. She made us feel welcome. There is one comment that she made that I will always hold dear. I pulled out a picture of Alyssa from my purse to show her and she asked if I would mind sending her a picture of Alyssa so that she could hang it up on their Wall of Fame / Wall of Hope. She said "I like to have pictures of all of our patients, it reminds us of what we are fighting for and gives us hope to find more answers". Did you see the part in that sentence that grabbed me by the heart strings....? She said "OUR patients". I said to her, "she should have been your patient, I wish she would have been". And she stopped me in my tracks and said "Alyssa IS our patient and she always will be. She may not be here physically but she is making a difference and I'd be honored to have her on our wall". This of course made the tears flow. Both tears of joy and tears of sadness. You see, they had never even met Alyssa, but they had already accepted her as their own, knowing that they would never get the privilege of meeting her. I pray that they are able to do great things with their research and hopefully find some answers to the many unknowns with HLHS. But like everything, it takes money to find answers and sadly CHD (congenital heart disease or defect) research is one of the most underfunded groups. So heartbreaking for the families of those 1 in 100 babies that are effected by a CHD every year. So because of the experience we were given from Mayo Clinic, that is why we choose to donate in memory of our little peanut, Alyssa, in hopes that one day the prognosis for these innocent babies will be better.
Here is the link to the Mayo Clinic HLHS blog: http://hlhsblog.mayoclinic.org/
On the most recent post, the lady in white laying with her sweet heart baby is a fellow heart mom that I've become acquainted with through Facebook. She makes hearts for other heart warriors and heart angels to place in a scrapbook to share with her little heart warrior when she is older. It is her way of showing her daughter when she gets older that she is not alone and she is not so different and many other children have walked in her difficult shoes. She is already forming a heart community connection for her daughter which I think is truly amazing and inspiring. Here is the heart she made for our sweet Alyssa. Here is her Facebook page: https://www.facebook.com/CeciliaVinjeAndFriends
Coulda shoulda woulda been 4 months old
Today our sweet little peanut would have been 4 months old. I get to imagine what she would be doing right now if she were still with us. Would she be rolling over, scooting, giggling at her older sister and brother? What would her personality be like? She would no doubt be stubborn and strong, a real fighter's spirit. She would be ours and we would relish in every second we had with her. Today, I'm ready to share a picture of our sweet baby with you. I only wish that I would have taken a million more pictures of her while I had the chance. I love photography and had my camera with me at the hospital, but in those moments all I could think about was how I didn't want to disturb her or make her uncomfortable. I wanted to love on her and memorize every ounce of her with my eyes. This is one picture that I will cherish forever. It is one of the very few we have of Alyssa with her eyes open. My brother, Garrett, captured it on his cell phone shortly after she was born. Not the best quality, but a cherished memory none the less. All of our pictures taken with our regular camera are of her with her eyes closed. The prostaglandin medicine used to keep her PDA open until surgery made her very sleepy.
Alyssa Lorraine just hours old, all 6 lbs 13 ozs of her.
Alyssa Lorraine just hours old, all 6 lbs 13 ozs of her.
The questions with no right answer
If there is one thing that I think any parent of a heart child (or any child with a critical illness for that matter) has asked, it would be: Why me? And that question goes hand in hand with: What did we do to deserve a life like this? Why my child? But now I've come to realize; Why not me? Why not our family? I am no better or no different than any other loving parent on this Earth. Nothing protects us from the cruel reality of this world. When we became pregnant with Alyssa, we already had one girl and one boy. So of course I was always asked the age old question......what do you want, a boy or girl? And I can honestly say, I didn't care. All I wanted was what any parent would want.....a healthy baby.
To this day I still wonder why God chose us to be the parents of a heart baby. Not just any heart baby, ours was one in a million. And when I say that, I truly mean it. Alyssa really was almost 1 in a million. I'll discuss this more later as I explain all the congenital defects that we came to find out later that Alyssa had.
But there is one thing I'm certain. Alyssa was loved. She touched the lives of so many without even meeting them. She is making a difference in the lives of others and thankfully with the help of Mayo Clinic, she will help in the research of Hypoplastic Left Heart Syndrome and will help create a better future for other HLHS children.
I don't regret one moment I got to spend with Alyssa. She changed my life. I'm forever grateful that I got to be her mother. And no matter how much it hurts that she is no longer here with us, I know in my heart she is waiting for us. Someday we will get to see her again. And until then, I will continue to do what any mom would do. I will talk about my child and share her story with anyone that listens. I will continue to raise awareness for congenital heart disease, b/c even if my impact is small, it is still an impact. Alyssa will be remembered and cherished in our lives forever. Her memory will live on and she will continue to make a difference.
In our arms for 5 days, in our lives forever
To this day I still wonder why God chose us to be the parents of a heart baby. Not just any heart baby, ours was one in a million. And when I say that, I truly mean it. Alyssa really was almost 1 in a million. I'll discuss this more later as I explain all the congenital defects that we came to find out later that Alyssa had.
But there is one thing I'm certain. Alyssa was loved. She touched the lives of so many without even meeting them. She is making a difference in the lives of others and thankfully with the help of Mayo Clinic, she will help in the research of Hypoplastic Left Heart Syndrome and will help create a better future for other HLHS children.
I don't regret one moment I got to spend with Alyssa. She changed my life. I'm forever grateful that I got to be her mother. And no matter how much it hurts that she is no longer here with us, I know in my heart she is waiting for us. Someday we will get to see her again. And until then, I will continue to do what any mom would do. I will talk about my child and share her story with anyone that listens. I will continue to raise awareness for congenital heart disease, b/c even if my impact is small, it is still an impact. Alyssa will be remembered and cherished in our lives forever. Her memory will live on and she will continue to make a difference.
In our arms for 5 days, in our lives forever
Official Diagnosis & Descriptions
After reviewing Alyssa's medical records and meeting with a geneticist, we finally have what I believe is Alyssa's official diagnosis.
Hypoplastic Left Heart Syndrome (diagnosed in-utero)
Aortic Valve Atresia and Mitral Valve Atresia (diagnosed in-utero w/ connection to HLHS)
Right Aortic Arch with an aberrant left subclavian artery (found during attempted Norwood and later officially diagnosed during cath procedure)
Complete vascular ring (found during attempted Norwood and later officially diagnosed during cath procedure)
Large Atrial Septal Defect or ASD (Confirmed during echo done after cardiac arrest while performing CPR and putting her on ECMO)
Meckel's diverticulum (Discovered during exploratory surgery into her tummy after she went into cardiac arrest and they needed to look for internal bleeding before placing her on ECMO)
Heterotaxy -(Diagnosed by a geneticist after she passed away based on information found on her autopsy)
HLHS is fatal without surgical intervention; and even with the surgeries, her heart would never be whole. There is no cure for HLHS, no fix that will make their heart function like that of a healthy heart. But there is hope; hope that these beautiful babies with half a heart are able to live their life and feel the love and compassion they so deserve. It may be a rough life and most certainly not that way any parent envisions their child to have to live. But at least they are now able to live and be loved and show everyone just how strong they are. 1 out of every 10,000 babies will be born with HLHS.
Descriptin of HLHS and explanation of 3 staged surgeries starting with the Norwood
http://www.chop.edu/service/cardiac-center/heart-conditions/hypoplastic-left-heart-syndrome-hlhs.html
Description of Right Aortic Arch - Approximately 0.1% of population has a right sided aortic arch, and about half of these have an aberrant left subclavian artery which may arise either directly from the aorta or from the Kommerell’s diverticulum.1 Although an aberrant left subclavian artery may occur in isolation, it is the commonest anomaly associated with a right aortic arch. Any symptoms, which result from an aberrant left subclavian artery, are associated with compression of the esophagus or trachea and are most likely to occur if its origin is dilated.2, 3 Quoted from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3074843/
Description of Cardaic Catheterization and Echocardiogram - both of which Alyssa had (she had two in-utero fetal echos and two echos after birth, one before surgery and one after the attempted surgery)
http://www.chop.edu/service/cardiac-center/our-services/pediatric-cardiac-diagnosis-and-testing.html
Description of Atrial Septal Defect (ASD)
http://www.chop.edu/service/cardiac-center/heart-conditions/atrial-septal-defect-asd.html
Description of Meckel's Diverticulum
*Present in about 2% of all infants
http://www.chop.edu/healthinfo/meckels-diverticulum.html
Description of Heterotaxy
*Alyssa's form is known as polysplenia or left atrial isomerism
*Alyssa had 3 accessory spleens in addition to her normal spleen
*Heterotaxy is very rare. For every 1,000,000 births, 4 of those babies will have heterotaxy. Our sweet Alyssa really was 1 in a million.
http://www.heterotaxy.org/Pages/what_is_heterotaxy.aspx
http://www.chdbabies.com/2009/08/overview-of-heterotaxy.html
These are just the definitions of what we know effected our sweet baby girl. Since our hospital never did any genetic testing on Alyssa, we will never know if she was a carrier of something that could be genetically linked to any of her defects. It's just one of the many things that were sadly left unanswered in regards to our baby girl.
Hypoplastic Left Heart Syndrome (diagnosed in-utero)
Aortic Valve Atresia and Mitral Valve Atresia (diagnosed in-utero w/ connection to HLHS)
Right Aortic Arch with an aberrant left subclavian artery (found during attempted Norwood and later officially diagnosed during cath procedure)
Complete vascular ring (found during attempted Norwood and later officially diagnosed during cath procedure)
Large Atrial Septal Defect or ASD (Confirmed during echo done after cardiac arrest while performing CPR and putting her on ECMO)
Meckel's diverticulum (Discovered during exploratory surgery into her tummy after she went into cardiac arrest and they needed to look for internal bleeding before placing her on ECMO)
Heterotaxy -(Diagnosed by a geneticist after she passed away based on information found on her autopsy)
HLHS is fatal without surgical intervention; and even with the surgeries, her heart would never be whole. There is no cure for HLHS, no fix that will make their heart function like that of a healthy heart. But there is hope; hope that these beautiful babies with half a heart are able to live their life and feel the love and compassion they so deserve. It may be a rough life and most certainly not that way any parent envisions their child to have to live. But at least they are now able to live and be loved and show everyone just how strong they are. 1 out of every 10,000 babies will be born with HLHS.
Descriptin of HLHS and explanation of 3 staged surgeries starting with the Norwood
http://www.chop.edu/service/cardiac-center/heart-conditions/hypoplastic-left-heart-syndrome-hlhs.html
Description of Right Aortic Arch - Approximately 0.1% of population has a right sided aortic arch, and about half of these have an aberrant left subclavian artery which may arise either directly from the aorta or from the Kommerell’s diverticulum.1 Although an aberrant left subclavian artery may occur in isolation, it is the commonest anomaly associated with a right aortic arch. Any symptoms, which result from an aberrant left subclavian artery, are associated with compression of the esophagus or trachea and are most likely to occur if its origin is dilated.2, 3 Quoted from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3074843/
Description of Cardaic Catheterization and Echocardiogram - both of which Alyssa had (she had two in-utero fetal echos and two echos after birth, one before surgery and one after the attempted surgery)
http://www.chop.edu/service/cardiac-center/our-services/pediatric-cardiac-diagnosis-and-testing.html
Description of Atrial Septal Defect (ASD)
http://www.chop.edu/service/cardiac-center/heart-conditions/atrial-septal-defect-asd.html
Description of Meckel's Diverticulum
*Present in about 2% of all infants
http://www.chop.edu/healthinfo/meckels-diverticulum.html
Description of Heterotaxy
*Alyssa's form is known as polysplenia or left atrial isomerism
*Alyssa had 3 accessory spleens in addition to her normal spleen
*Heterotaxy is very rare. For every 1,000,000 births, 4 of those babies will have heterotaxy. Our sweet Alyssa really was 1 in a million.
http://www.heterotaxy.org/Pages/what_is_heterotaxy.aspx
http://www.chdbabies.com/2009/08/overview-of-heterotaxy.html
These are just the definitions of what we know effected our sweet baby girl. Since our hospital never did any genetic testing on Alyssa, we will never know if she was a carrier of something that could be genetically linked to any of her defects. It's just one of the many things that were sadly left unanswered in regards to our baby girl.
Worst day of our life (October 9, 2012)
October 9th should have been a day of celebration. It was our 8 year wedding anniversary and we had hoped to be celebrating a successful Norwood operation and the start of a road to recovery for our little girl. Instead we were faced with the worst outcome any parent could ever imagine. We were faced with having to give the doctors the okay to shut off the ECMO life support for our sweet Alyssa.
Thinking back:
October 8th was supposed to be Alyssa's Norwood day. The first of three open heart surgeries that she needed in order to live. The Norwood is the most complex and highest risk procedure in the series of staged reconstruction for Hypoplastic Left Heart Syndrome. We hoped and prayed for a successful surgery and to be able to hold our baby again and keep her healthy as she worked her way towards surgery number 2. If she could make it to her second surgery, we knew the chances of survival increased greatly. Sadly our baby girl was meant for bigger things. God had a different plan for our little peanut.
It is so hard to think that our baby girl should be 4 months old today. We continue to deal with our emotions regarding her diagnosis and death on a daily basis. Each day is different, a range of emotions so big that sometimes you don't know which one to focus on. With each new fact we learn about our daughter's diagnosis and her care, comes more questions. Questions that more than likely we will never have an answer to.
On the morning of October 9th, we had avoided going down the the ECMO procedure room early in the morning. We hoped and prayed that during the night there would have been a miracle that could bring our baby back to us with all her organs working. We were in denial and feared the reality of what the day would bring. We never got a call in the middle of the night, so we knew she was still alive, but we had heavy hearts of what we would walk into that morning. When we left her at 11pm the night before, the nurse working on her had such sadness in her eyes.
My mother in law works at the hospital and has worked with some of the doctors and nurses that were caring for Alyssa. When she got to work that day, she went straight to the ECMO procedure room to see if there had been any progress. She was still in denial as well even after seeing that Alyssa had made no progress throughout the night. After speaking with the doctors, she came up to our Ronald McDonald house room and shared with us the news that we had been dreading. She said that she asked the surgeon that if a miracle happened and her organs started responding, could he fix her heart. And our surgeon, one that she has worked with in the past and has always known that he never gives up and will try anything before he says there is no more hope....he looked at her and said "We aren't going to get that chance." (referring to her heart) They knew that morning that there was nothing more that they could do for our sweet Alyssa, they were just waiting for my husband and I to come back to the procedure room to discuss Alyssa's condition with us and suggest to us the removal of life support.
Before my mother in law came to our room, I had just gotten done pumping. I already had so much milk coming in and with each pumping session, all I could do was wonder whether or not my baby would every be able to taste her mother's milk. And then my mother in law came into the room and confirmed my worst fear, our baby was slipping away. All the doctors and nurses were to the point that they were just pumping Alyssa full of fluids to basically keep her alive long enough for us to see her once more and say our goodbyes. My world crumbled around me as I fell to the floor in sobs. How does one function with the knowledge that they will have to say goodbye to one of their children. It's not natural and feels so cruel. I felt like I was on autopilot. Nothing made sense, this could not be happening, but it was. My mother in law had already called my mom and she was on her way to the hospital. Our oldest daughter was on a school field trip and our son was at our house with grandpa. The world was still going on around us, but our world was crumbling. Once my mom arrived, Chris and I went to see Alyssa with our moms. We both clung to our own moms in despair as we looked at our little girl lifeless hooked up to what felt like hundreds of wires, tubes and machines. All the doctors were giving us tidbits of information about the lack of progress that had been made. It's hard to remember what each person said, I just remember hearing certain phrases: No urine output, kidneys aren't working, liver enlarged, pupils fixed and dilated, no brain activity, mottled limbs, couldn't get pressures where they needed to be, not sure what caused her to vasodilate, cause of cardiac arrest unknown but possible allergic reaction to dye used in the cath. So many things were thrown at us, but the one that hurts the worst is all the doctors saying to us that there is nothing more they can do for our sweet baby. Her body is no longer showing any signs of life and they suggest the removal of life support. Even knowing that our daughter's condition was critical from the very beginning, even knowing that there was a fairly large risk of death prior to the completion of all 3 surgeries, still NOTHING prepares you for a doctor telling you that your child is going to die. NOTHING! One of the cardiologists even asked when we thought we'd unhook the ECMO. I told them I needed time for family to arrive. I still find it strange that they wanted a time frame and when we told them about an hour he made it seems like that was to long. I don't know if it was b/c Alyssa's body was letting go quickly, even on ECMO, or b/c he just didn't see the point in having the medical staff continue to work on her when they knew the outcome was not life. I choose to believe that it was the first reason.
In those moments after the doctors gave us the dreaded news, I remember crying to my mom that I needed Joe. Joe is my oldest brother. I wasn't crying for him just b/c I wanted his support, I was crying for him b/c he's a funeral director. And I knew that if I had to let my baby go that I only wanted one person taking care of her and that was my brother. We are blessed to be from a small town and we know the family that runs the funeral home where are daughter would have her service. My brother does not work for their funeral home, but they still let him help as much as possible b/c that was my wishes. I didn't realize at the time how hard this task was going to be on my brother, all I could think about was my baby girl and how in all of her final moments spent here on Earth, I wanted them to be with family. My brother was the one that picked our sweet baby up from the hospital after her autopsy (more on that later). I found out later that my mom also went with my brother to pick up our sweet Alyssa. Our precious baby rode all the way to the funeral home in grandma's arms. I can't thank them enough for what they did for me and the piece of mind it gave me to have them with her in those moments.
Now backtracking to when we said good-bye. Some of the moments I'll keep to myself, as they are precious to me. Chris and I walked the dreaded hallway to the ECMO procedure room where our sweet baby lay a little after 1pm. We had decided that Alyssa would be placed in my arms after being removed from ECMO and we could hold her as long as we wanted. The staff got us chairs and spoke briefly with us prior to starting the process of removing ECMO. There were so many wires and tubes that had to be cut and clamped prior to them placing her in our arms. They were working quickly as her blood pressure was dropping fast and they wanted to get her into our arms as soon as possible. These are the moments I'll keep to myself. Our sweet Alyssa passed away in my arms at the same hour and minute of her birth. 1:40pm. She was exactly 5 days old.
After she was gone, we decided to have the nurses clean her up and bring her into another room where are family was waiting. So many people never got to meet our sweet baby girl b/c of the fear of her getting sick prior to her Norwood, so we wanted to give them a chance to see her. When Chris and I got to the room, I was overwhelmed to see that all 8 of my brothers and sisters were there. Also there were my mom, dad and step dad and Chris's mom, one of his sisters and my OB. Those last moments with Alyssa shared with loved ones is something I'll never forget. I had my computer with me and played Matt Hammitt's song "All of Me". He also has a child with HLHS and he wrote the song for his son. As I sat there loving on my baby and saying my last goodbyes, my breasts were hard as a rock and hurt so bad. I hadn't pumped since 7 that morning. It was a painful reminder that even though my heart knows that my baby is no longer with us, my body does not and it continues to provide for our newborn baby despite her departure from this Earth.
Thinking back:
October 8th was supposed to be Alyssa's Norwood day. The first of three open heart surgeries that she needed in order to live. The Norwood is the most complex and highest risk procedure in the series of staged reconstruction for Hypoplastic Left Heart Syndrome. We hoped and prayed for a successful surgery and to be able to hold our baby again and keep her healthy as she worked her way towards surgery number 2. If she could make it to her second surgery, we knew the chances of survival increased greatly. Sadly our baby girl was meant for bigger things. God had a different plan for our little peanut.
It is so hard to think that our baby girl should be 4 months old today. We continue to deal with our emotions regarding her diagnosis and death on a daily basis. Each day is different, a range of emotions so big that sometimes you don't know which one to focus on. With each new fact we learn about our daughter's diagnosis and her care, comes more questions. Questions that more than likely we will never have an answer to.
On the morning of October 9th, we had avoided going down the the ECMO procedure room early in the morning. We hoped and prayed that during the night there would have been a miracle that could bring our baby back to us with all her organs working. We were in denial and feared the reality of what the day would bring. We never got a call in the middle of the night, so we knew she was still alive, but we had heavy hearts of what we would walk into that morning. When we left her at 11pm the night before, the nurse working on her had such sadness in her eyes.
My mother in law works at the hospital and has worked with some of the doctors and nurses that were caring for Alyssa. When she got to work that day, she went straight to the ECMO procedure room to see if there had been any progress. She was still in denial as well even after seeing that Alyssa had made no progress throughout the night. After speaking with the doctors, she came up to our Ronald McDonald house room and shared with us the news that we had been dreading. She said that she asked the surgeon that if a miracle happened and her organs started responding, could he fix her heart. And our surgeon, one that she has worked with in the past and has always known that he never gives up and will try anything before he says there is no more hope....he looked at her and said "We aren't going to get that chance." (referring to her heart) They knew that morning that there was nothing more that they could do for our sweet Alyssa, they were just waiting for my husband and I to come back to the procedure room to discuss Alyssa's condition with us and suggest to us the removal of life support.
Before my mother in law came to our room, I had just gotten done pumping. I already had so much milk coming in and with each pumping session, all I could do was wonder whether or not my baby would every be able to taste her mother's milk. And then my mother in law came into the room and confirmed my worst fear, our baby was slipping away. All the doctors and nurses were to the point that they were just pumping Alyssa full of fluids to basically keep her alive long enough for us to see her once more and say our goodbyes. My world crumbled around me as I fell to the floor in sobs. How does one function with the knowledge that they will have to say goodbye to one of their children. It's not natural and feels so cruel. I felt like I was on autopilot. Nothing made sense, this could not be happening, but it was. My mother in law had already called my mom and she was on her way to the hospital. Our oldest daughter was on a school field trip and our son was at our house with grandpa. The world was still going on around us, but our world was crumbling. Once my mom arrived, Chris and I went to see Alyssa with our moms. We both clung to our own moms in despair as we looked at our little girl lifeless hooked up to what felt like hundreds of wires, tubes and machines. All the doctors were giving us tidbits of information about the lack of progress that had been made. It's hard to remember what each person said, I just remember hearing certain phrases: No urine output, kidneys aren't working, liver enlarged, pupils fixed and dilated, no brain activity, mottled limbs, couldn't get pressures where they needed to be, not sure what caused her to vasodilate, cause of cardiac arrest unknown but possible allergic reaction to dye used in the cath. So many things were thrown at us, but the one that hurts the worst is all the doctors saying to us that there is nothing more they can do for our sweet baby. Her body is no longer showing any signs of life and they suggest the removal of life support. Even knowing that our daughter's condition was critical from the very beginning, even knowing that there was a fairly large risk of death prior to the completion of all 3 surgeries, still NOTHING prepares you for a doctor telling you that your child is going to die. NOTHING! One of the cardiologists even asked when we thought we'd unhook the ECMO. I told them I needed time for family to arrive. I still find it strange that they wanted a time frame and when we told them about an hour he made it seems like that was to long. I don't know if it was b/c Alyssa's body was letting go quickly, even on ECMO, or b/c he just didn't see the point in having the medical staff continue to work on her when they knew the outcome was not life. I choose to believe that it was the first reason.
In those moments after the doctors gave us the dreaded news, I remember crying to my mom that I needed Joe. Joe is my oldest brother. I wasn't crying for him just b/c I wanted his support, I was crying for him b/c he's a funeral director. And I knew that if I had to let my baby go that I only wanted one person taking care of her and that was my brother. We are blessed to be from a small town and we know the family that runs the funeral home where are daughter would have her service. My brother does not work for their funeral home, but they still let him help as much as possible b/c that was my wishes. I didn't realize at the time how hard this task was going to be on my brother, all I could think about was my baby girl and how in all of her final moments spent here on Earth, I wanted them to be with family. My brother was the one that picked our sweet baby up from the hospital after her autopsy (more on that later). I found out later that my mom also went with my brother to pick up our sweet Alyssa. Our precious baby rode all the way to the funeral home in grandma's arms. I can't thank them enough for what they did for me and the piece of mind it gave me to have them with her in those moments.
Now backtracking to when we said good-bye. Some of the moments I'll keep to myself, as they are precious to me. Chris and I walked the dreaded hallway to the ECMO procedure room where our sweet baby lay a little after 1pm. We had decided that Alyssa would be placed in my arms after being removed from ECMO and we could hold her as long as we wanted. The staff got us chairs and spoke briefly with us prior to starting the process of removing ECMO. There were so many wires and tubes that had to be cut and clamped prior to them placing her in our arms. They were working quickly as her blood pressure was dropping fast and they wanted to get her into our arms as soon as possible. These are the moments I'll keep to myself. Our sweet Alyssa passed away in my arms at the same hour and minute of her birth. 1:40pm. She was exactly 5 days old.
After she was gone, we decided to have the nurses clean her up and bring her into another room where are family was waiting. So many people never got to meet our sweet baby girl b/c of the fear of her getting sick prior to her Norwood, so we wanted to give them a chance to see her. When Chris and I got to the room, I was overwhelmed to see that all 8 of my brothers and sisters were there. Also there were my mom, dad and step dad and Chris's mom, one of his sisters and my OB. Those last moments with Alyssa shared with loved ones is something I'll never forget. I had my computer with me and played Matt Hammitt's song "All of Me". He also has a child with HLHS and he wrote the song for his son. As I sat there loving on my baby and saying my last goodbyes, my breasts were hard as a rock and hurt so bad. I hadn't pumped since 7 that morning. It was a painful reminder that even though my heart knows that my baby is no longer with us, my body does not and it continues to provide for our newborn baby despite her departure from this Earth.
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