Three days ago, we were able to have our "big" meeting with the official cardiologist. We ended up there after first being referred to a Maternal Fetal Medicine (MFM) specialist after my regular OB found an abnormality with the baby's heart at our 20-week ultrasound, and then the MFM referred us to the pediatric cardiologist. When we initially met with the MFM specialist, she concluded that the baby did have an obvious defect. She gave me some literature to read on Hypoplastic Left Heart Syndrome saying that "this is probably what it is", talked with us for a bit, and then told us that we would need to meet with a pediatric cardiologist and have an echocardiogram in order for the baby to be properly and officially diagnosed.
THE ECHOCARDIOGRAM:
Fast forward to this past Wednesday. We got there 45 minutes early, anxious, and hoping they could get us in before the appointment time. We waited there for 45 minutes. Go figure. :) We were called back, and first had our echocardiogram, which was an in-depth ultrasound JUST on the baby's heart. The technician performing the the echo said that she would primarily be taking all the images, and the doctor would only come in if he needed a closer look at something. It was an hour long procedure of her getting different close ups and angles on the baby's heart. Though my husband and I don't know a TON about ultrasounds or how to read them, it was obvious that she was looking at the heart, and it was also obvious at how a-symmetrical the heart looked. There was a big side that was pumping and beating, and there was a smaller side that didn't look like it was doing much. Near the end, the echo technician walked out for a minute and came back with the doctor. He greeted us, and said he just wanted to take another look at some things. He gelled up the ultrasound wand, put it back on my stomach, and looked intensely at the images on the screen. He and the tech whispered different medical terms as they studied the baby's heart, but the one part I could understand was when they would say things like, "yeah, that's really small", or "it's so tiny". Not super comforting words to hear...but we had kind of already gotten used to the idea that our baby has a heart defect, and his anatomy is going to be different.
THE CONSULTATION:
"Okay" the doctor said. "I'm done looking around, so let's go back to my office and discuss the findings". He took a big breath as he walked out the door ahead of us, and he rubbed the back of his neck as he walked down the hallway. His body language told me that these "findings" were not little.
We got to his office, and sat down on a couch while he sat across from us. And then our consultation began. "So... How much info have your other doctors told you about what they've found out on ultrasounds?" He asked. I told him that the MFM thought that it was Hypoplastic Left Heart Syndrome (HLHS), but that we needed to come to him for confirmation.
He took another deep breath. "Yes...Yes, that's right. Have you read anything about the condition yet?"
"I've read a little from sources like CHOP and Cincinnati Children's Hospital," I said.
"AND...we know that THAT's a serious thing," my husband said.
"Yes" the doctor said. "This IS a serious thing. It's one of the MOST serious heart conditions that a person can have. And it is very complex to treat."
He gave us handouts, and talked about the anatomy of the baby's heart, showing us a side-by-side image of a normal heart. He explained that "the baby's left side is pretty much done. It just doesn't function". And he told us how that will effect blood flow to the rest of the baby's body and vital organs once he's born.
The cardiologist told us there were two options.
"Yes. We know" I said. "Either surgeries, or a heart transplant".
"Well..." the doctor said, "One of the options is surgery. But we don't do transplants on newborns. It's took risky, and we find that the waiting list is just too long. These babies die before they can receive a heart. So, the best thing to do is get the baby on a transplant waiting list, but have the heart surgeries in the mean time."
"Okay," we said. "Then, what's option two?"
"Well, the other option is a more palliative approach." He said. [By the way, I just wanted to say that I HATE the word "palliative". I heard that so much when dealing with my mom's illness. It's a yucky, sad word for me. "palliative" care is when they basically just keep someone comfortable and stress free and wait for them to die.] The doctor continued, "Some families, for whatever reason, decide to not have the surgery. Sometimes there's not an option for surgery because it would just be too complicated, and there's nothing more that can be done. Sometimes, the families just choose not to do it. And in that case, they can deliver normally, and take the baby home, have family time to be with the baby, do things like bless the baby, take newborn photos and be peaceful instead of being in a hospital environment. We will have hospice care come in and make the baby as comfortable as possible, and then after a few days the baby will pass away."
That's when I started to cry. What a HORRIBLE image. What a sad experience. Do any of these families know before hand what hospice care looks like, and how depressing it is? Do any of these families know what it's like to see a loved one just wither and have their body slowly shut down before their eyes? Do they know what it's like to have hospice nurses come in to your home, sometimes multiple times a day, to take stats and administer medicines that will help your loved one be comfortable, but also causing them to be unaware and out of it? It's too fresh in my mind. Hearing that just hurt my heart. My heart breaks for those families that travel down that road, either by choice or by necessity.
"Well, option two is not an option for us" my husband told the doctor.
"So...from what you saw, our baby is a candidate for surgery?" I asked.
"Oh yes." He said. "Right now, the baby's heart is operational with a good survival rate. Now, that can always change in the future. As the baby continues to develop, things can become smaller and more restricted. But from what I saw today, we can have surgery for this baby. And, if things stay as they are right now, we're looking at an 85% change of survival."
The doctor went on to tell us about the 3-stages of open heart surgery (OHS) that our baby would require. I would deliver the baby, and he would then immediately be taken to ICU for monitoring. He would have his first OHS within 2-6 days after birth, depending on how stable he is. They would need to immediately administer medications to him in order to keep the hole between the two chambers in his heart open. Every baby is born with this hole, as it allows blood flow between the two chambers while in utero, and closes within a couple days after birth. "But once that hole closes, the baby dies" the doctor said. "So, we want to make sure we're able to keep that hole open, and operate before it closes".
The second surgery would be at around 6 months of age. The third surgery would be around 18-months to 2 years of age. ALL are major open-heart surgeries. The first one has the highest mortality rate, while the other ones have much higher survival rates. The baby might require more surgeries in the future as he ages and grows, but these three surgeries are the standard for HLHS and getting the heart to function well enough to get blood where it needs to go. (I'll be posting more about the specific procedures in a following post, so look for that.) He will most likely always need to be on daily medications and supplements, and may require a transplant (or more than one) in the future. "Some of our kids here have had all three surgeries and are on their second transplant heart" he said. Scary...but wonderful for those kids and that they're still alive.
COMPLICATIONS, SIDE EFFECTS, THINGS TO BE AWARE OF:
We then got into a discussion about possible side effects, and negative things we should look for with our HLHS baby. Though I had spent the last two weeks reading up a lot on this defect and our baby's situation, the cardiologist gave us a lot more to process and think about.
"Now...a lot of these kids will have behavior disorders, lower IQ, and some neurological issues because of their defect" He told us.
"Wait. So, we've had two ultrasounds that have looked at his brain development, and they both said that his brain size and growth is normal, that the anatomy looks normal." I said.
"That may be. But because of the nature of this defect, and the fact that blood has trouble circulating to the brain, or the baby has lower oxygen levels than what he should have, MRI's after birth almost always show something." He told us.
So...that's totally disheartening.
The next thing he told us was that "A lot of heart patients will also have other organs start to fail as they get older. Particularly the liver. And often times they will need a liver transplant AND a heart transplant. Heart transplants themselves have a half life, and when they work, are only good for about 10 years. Sometimes the body rejects the heart, and it lasts for less."
I asked him about the baby's immune system and if that would be compromised. On some support groups I've joined, some parents say that a sibling's runny nose can put their heart baby into the hospital for weeks. "That's true" he said. "It's not that they catch things easier, per se, but that once they have something, it's difficult for their bodies to fight it off. They're already dealing with lower oxygen levels, and if you get a cold, those levels drop more, and that effects the body's organs, etc.. So, when these kids get sick, it's a bigger deal, and can be dangerous." He said that everyone in our hours should be up to date on their vaccinations, including seasonal flu shots. Anyone who comes and visit the house should be the same as well. We should avoid large crowds a 1-2 months before and after each surgery. (So....until he's like 8 months old.). We should try to protect our other kids from brining germs back into the house.
OUR TIMELINE WITH THE BABY:
For me, this was the hardest part of the conversation. We were lucky enough to have the doctor be very strait-forward, but I'm sure it was an uncomfortable conversation for him to deliver. It was uncomfortable to listen to. He wanted to make sure that we, as parents, understood the severity of this situation.
"HLHS is a SERIOUS thing. It's a lifelong thing. You child will live differently than your other children. He will start behind the 8 ball, and have a lot of challenges. One of the things that I want you to understand is that you should never expect this child to outlive you. He has a serious heart defect, and whether it's his own heart, or a transplant, it won't last forever. With every surgery, is a lessened chance of long-term survival. Most of our kids we see...it's hard for them to make it to 5 years. Studies have shown that once they get to that age, they tend to make it to their teens and 20's. But it is miraculous for these kids to make it past 30. And, at any time in between, complications could arise, and the child can die." He told us.
Wow... THAT is a hard pill for any parent to swallow. I don't want to image...I CAN'T imagine saying goodbye to my baby when he's 5 years old. But he's right. This is something that happens, and it is important for us to consider.
TAKING ADVANTAGE OF THE TIME WE HAVE NOW:
The doctor told us that he sees parents go one of two ways. "Some are just overcome by their grief and negative emotions, that it just pulls them down. There are other families that use this as a defining moment, when they realize that they want to take advantage of every single day, and live life to the fullest, and make every opportunity as fulfilling and joyful as possibly, because they know that their time is limited. So, What I'm saying is that you two can decide how you want to live your lives with this situation you've been given. How you're going to have your family life and home life be."
He also told us that though this situation is very serious, it's not extremely rare. He see about 2 newborns a month that are born with this exact same condition. It's frequent enough that there is awareness, and that medical professionals know how to address the situation. The cardiologist told us "When I started training, babies with this situation almost always were expected to die. Now, it's not so much a matter of dying, as it is improving the quality of life that these babies have. We want them to be able to participate in school, to be able to jump and play like other kids." He told us that there is lots of ongoing research for this particular heart defect. He told us that we would probably be approached by researchers to have our baby be involved in studies about HLHS "so we can learn more and improve" the outcomes for children with congenital heart defects (CHD).
I am prepared to be an advocate for HLHS and CHD awareness. I feel like I already am. If we can use our circumstances to help further medical knowledge and better the lives of other children in the future, I am grateful that our hardship can make a positive difference in the lives of others.
THE AFTERMATH:
The doctor sent us home with a file folder of different print outs, pamphlets, contact cards, and other information. The folder alone overwhelmed me. And the office visit made me recognize that this is a totally different and brand new world that we've been dropped in to. There is SOOOOO MUCH to take in, to learn, and to understand.
We left in kind of a daze, and not knowing what to think. I was upset, and didn't want to go home right away, so we went to a Mexican restaurant I've been wanting to try (which was ANOTHER disappointment. Good Mexican food is non-existent in Salt Lake. How I miss AZ sometimes.) And we just talked about the situation, and mostly what it means for our family in the immediate future, and for the next 5, 10, 15 years or more. It's going to be hard. But it's also going to be a joy. We want to provide experiences for our heart warrior that will allow him to live a fulfilled life in the time that he has. We talked about our dream of owning our farm (something that has been a dream of ours for a couple of years now). How magical would it be for a child to grow up on a farm, surrounded by fun animals, and have a peaceful upbringing away from the noise of the world? That would be the perfect retreat for our family. So...after the baby's surgeries and recover in about 3 years from now, that's where we'll be.
It's been three days since our appointment, and we've both had to take a lot of quiet time to process things together and on our own. I finally felt like today was a good day to sit down and write this all up. It's overwhelming. It's not my first choice. It's SO MUCH to think about. And...It's just the beginning.
I wonder, though, will he really need to live his life in a bubble? Away from crowds, away from germs? And will he really have academic challenges? Can he even go to regular school? Does he just need to be home schooled? Will we always need to live close to a hospital? Lots of things to think about...
What I do know to be true is this: (And, this was a conversation I had with one of my aunts today, who went through a similar stress when her baby had complications in utero.)
On one side, there is the doctor telling you "He will have this disability, he will have problems doing this independently, he will have a lower quality of life" etc., and then there is the other side of what God is telling your heart and mind. Our Heavenly Father is always right, because he always knows. The doctors can tell you what's likely, but that doesn't mean it's definite. Children are resilient, and their minds an bodies can do miraculous things. Parent's can help these kids be miraculous. God can heal and make things whole.
Our family feels comforted that this situation will be okay. Yes, there will be challenges, and yes, our baby will have a lower life expectancy. He probably won't outlive us. But we feel confident that he'll get through these first three surgeries, and that he will be able to overcome his obstacles, and that he can live a joyful and fulfilled life as a part of our family, no matter how long that is. We are also blessed to live in a world where medical knowledge and innovation keeps improving. Maybe in 5 years or 10 years, there will be a better solution and treatment for our child. We live in a great time.
MOVING FORWARD:
Our goal now is to figure out what our family vision of "normal" looks to us. How can we give our baby the same opportunities and experiences that our other children have? How will we take advantage of EVERY SINGLE DAY, and make each and every day the best day ever? How do we help our other children feel involved and loved and special, and not forgotten even though this baby will require a lot more time and care and attention? How do we balance that?
I know that through our faith in the Lord, we can be guided by His hand. He will help us to be the best parents possible for ALL of our children. He will inspire our minds and guide us to the places we need to go, the things or people we need to see in order to help each family member thrive and live a full and happy life. It's just putting in that 100% trust which can be tricky. But once we learn how to trust, the fear goes away and the peace stays, and no matter what the outcome, all will be well.
THE ECHOCARDIOGRAM:
Fast forward to this past Wednesday. We got there 45 minutes early, anxious, and hoping they could get us in before the appointment time. We waited there for 45 minutes. Go figure. :) We were called back, and first had our echocardiogram, which was an in-depth ultrasound JUST on the baby's heart. The technician performing the the echo said that she would primarily be taking all the images, and the doctor would only come in if he needed a closer look at something. It was an hour long procedure of her getting different close ups and angles on the baby's heart. Though my husband and I don't know a TON about ultrasounds or how to read them, it was obvious that she was looking at the heart, and it was also obvious at how a-symmetrical the heart looked. There was a big side that was pumping and beating, and there was a smaller side that didn't look like it was doing much. Near the end, the echo technician walked out for a minute and came back with the doctor. He greeted us, and said he just wanted to take another look at some things. He gelled up the ultrasound wand, put it back on my stomach, and looked intensely at the images on the screen. He and the tech whispered different medical terms as they studied the baby's heart, but the one part I could understand was when they would say things like, "yeah, that's really small", or "it's so tiny". Not super comforting words to hear...but we had kind of already gotten used to the idea that our baby has a heart defect, and his anatomy is going to be different.
THE CONSULTATION:
"Okay" the doctor said. "I'm done looking around, so let's go back to my office and discuss the findings". He took a big breath as he walked out the door ahead of us, and he rubbed the back of his neck as he walked down the hallway. His body language told me that these "findings" were not little.
We got to his office, and sat down on a couch while he sat across from us. And then our consultation began. "So... How much info have your other doctors told you about what they've found out on ultrasounds?" He asked. I told him that the MFM thought that it was Hypoplastic Left Heart Syndrome (HLHS), but that we needed to come to him for confirmation.
He took another deep breath. "Yes...Yes, that's right. Have you read anything about the condition yet?"
"I've read a little from sources like CHOP and Cincinnati Children's Hospital," I said.
"AND...we know that THAT's a serious thing," my husband said.
"Yes" the doctor said. "This IS a serious thing. It's one of the MOST serious heart conditions that a person can have. And it is very complex to treat."
He gave us handouts, and talked about the anatomy of the baby's heart, showing us a side-by-side image of a normal heart. He explained that "the baby's left side is pretty much done. It just doesn't function". And he told us how that will effect blood flow to the rest of the baby's body and vital organs once he's born.
The cardiologist told us there were two options.
"Yes. We know" I said. "Either surgeries, or a heart transplant".
"Well..." the doctor said, "One of the options is surgery. But we don't do transplants on newborns. It's took risky, and we find that the waiting list is just too long. These babies die before they can receive a heart. So, the best thing to do is get the baby on a transplant waiting list, but have the heart surgeries in the mean time."
"Okay," we said. "Then, what's option two?"
"Well, the other option is a more palliative approach." He said. [By the way, I just wanted to say that I HATE the word "palliative". I heard that so much when dealing with my mom's illness. It's a yucky, sad word for me. "palliative" care is when they basically just keep someone comfortable and stress free and wait for them to die.] The doctor continued, "Some families, for whatever reason, decide to not have the surgery. Sometimes there's not an option for surgery because it would just be too complicated, and there's nothing more that can be done. Sometimes, the families just choose not to do it. And in that case, they can deliver normally, and take the baby home, have family time to be with the baby, do things like bless the baby, take newborn photos and be peaceful instead of being in a hospital environment. We will have hospice care come in and make the baby as comfortable as possible, and then after a few days the baby will pass away."
That's when I started to cry. What a HORRIBLE image. What a sad experience. Do any of these families know before hand what hospice care looks like, and how depressing it is? Do any of these families know what it's like to see a loved one just wither and have their body slowly shut down before their eyes? Do they know what it's like to have hospice nurses come in to your home, sometimes multiple times a day, to take stats and administer medicines that will help your loved one be comfortable, but also causing them to be unaware and out of it? It's too fresh in my mind. Hearing that just hurt my heart. My heart breaks for those families that travel down that road, either by choice or by necessity.
"Well, option two is not an option for us" my husband told the doctor.
"So...from what you saw, our baby is a candidate for surgery?" I asked.
"Oh yes." He said. "Right now, the baby's heart is operational with a good survival rate. Now, that can always change in the future. As the baby continues to develop, things can become smaller and more restricted. But from what I saw today, we can have surgery for this baby. And, if things stay as they are right now, we're looking at an 85% change of survival."
The doctor went on to tell us about the 3-stages of open heart surgery (OHS) that our baby would require. I would deliver the baby, and he would then immediately be taken to ICU for monitoring. He would have his first OHS within 2-6 days after birth, depending on how stable he is. They would need to immediately administer medications to him in order to keep the hole between the two chambers in his heart open. Every baby is born with this hole, as it allows blood flow between the two chambers while in utero, and closes within a couple days after birth. "But once that hole closes, the baby dies" the doctor said. "So, we want to make sure we're able to keep that hole open, and operate before it closes".
The second surgery would be at around 6 months of age. The third surgery would be around 18-months to 2 years of age. ALL are major open-heart surgeries. The first one has the highest mortality rate, while the other ones have much higher survival rates. The baby might require more surgeries in the future as he ages and grows, but these three surgeries are the standard for HLHS and getting the heart to function well enough to get blood where it needs to go. (I'll be posting more about the specific procedures in a following post, so look for that.) He will most likely always need to be on daily medications and supplements, and may require a transplant (or more than one) in the future. "Some of our kids here have had all three surgeries and are on their second transplant heart" he said. Scary...but wonderful for those kids and that they're still alive.
COMPLICATIONS, SIDE EFFECTS, THINGS TO BE AWARE OF:
We then got into a discussion about possible side effects, and negative things we should look for with our HLHS baby. Though I had spent the last two weeks reading up a lot on this defect and our baby's situation, the cardiologist gave us a lot more to process and think about.
"Now...a lot of these kids will have behavior disorders, lower IQ, and some neurological issues because of their defect" He told us.
"Wait. So, we've had two ultrasounds that have looked at his brain development, and they both said that his brain size and growth is normal, that the anatomy looks normal." I said.
"That may be. But because of the nature of this defect, and the fact that blood has trouble circulating to the brain, or the baby has lower oxygen levels than what he should have, MRI's after birth almost always show something." He told us.
So...that's totally disheartening.
The next thing he told us was that "A lot of heart patients will also have other organs start to fail as they get older. Particularly the liver. And often times they will need a liver transplant AND a heart transplant. Heart transplants themselves have a half life, and when they work, are only good for about 10 years. Sometimes the body rejects the heart, and it lasts for less."
I asked him about the baby's immune system and if that would be compromised. On some support groups I've joined, some parents say that a sibling's runny nose can put their heart baby into the hospital for weeks. "That's true" he said. "It's not that they catch things easier, per se, but that once they have something, it's difficult for their bodies to fight it off. They're already dealing with lower oxygen levels, and if you get a cold, those levels drop more, and that effects the body's organs, etc.. So, when these kids get sick, it's a bigger deal, and can be dangerous." He said that everyone in our hours should be up to date on their vaccinations, including seasonal flu shots. Anyone who comes and visit the house should be the same as well. We should avoid large crowds a 1-2 months before and after each surgery. (So....until he's like 8 months old.). We should try to protect our other kids from brining germs back into the house.
OUR TIMELINE WITH THE BABY:
For me, this was the hardest part of the conversation. We were lucky enough to have the doctor be very strait-forward, but I'm sure it was an uncomfortable conversation for him to deliver. It was uncomfortable to listen to. He wanted to make sure that we, as parents, understood the severity of this situation.
"HLHS is a SERIOUS thing. It's a lifelong thing. You child will live differently than your other children. He will start behind the 8 ball, and have a lot of challenges. One of the things that I want you to understand is that you should never expect this child to outlive you. He has a serious heart defect, and whether it's his own heart, or a transplant, it won't last forever. With every surgery, is a lessened chance of long-term survival. Most of our kids we see...it's hard for them to make it to 5 years. Studies have shown that once they get to that age, they tend to make it to their teens and 20's. But it is miraculous for these kids to make it past 30. And, at any time in between, complications could arise, and the child can die." He told us.
Wow... THAT is a hard pill for any parent to swallow. I don't want to image...I CAN'T imagine saying goodbye to my baby when he's 5 years old. But he's right. This is something that happens, and it is important for us to consider.
TAKING ADVANTAGE OF THE TIME WE HAVE NOW:
The doctor told us that he sees parents go one of two ways. "Some are just overcome by their grief and negative emotions, that it just pulls them down. There are other families that use this as a defining moment, when they realize that they want to take advantage of every single day, and live life to the fullest, and make every opportunity as fulfilling and joyful as possibly, because they know that their time is limited. So, What I'm saying is that you two can decide how you want to live your lives with this situation you've been given. How you're going to have your family life and home life be."
He also told us that though this situation is very serious, it's not extremely rare. He see about 2 newborns a month that are born with this exact same condition. It's frequent enough that there is awareness, and that medical professionals know how to address the situation. The cardiologist told us "When I started training, babies with this situation almost always were expected to die. Now, it's not so much a matter of dying, as it is improving the quality of life that these babies have. We want them to be able to participate in school, to be able to jump and play like other kids." He told us that there is lots of ongoing research for this particular heart defect. He told us that we would probably be approached by researchers to have our baby be involved in studies about HLHS "so we can learn more and improve" the outcomes for children with congenital heart defects (CHD).
I am prepared to be an advocate for HLHS and CHD awareness. I feel like I already am. If we can use our circumstances to help further medical knowledge and better the lives of other children in the future, I am grateful that our hardship can make a positive difference in the lives of others.
THE AFTERMATH:
The doctor sent us home with a file folder of different print outs, pamphlets, contact cards, and other information. The folder alone overwhelmed me. And the office visit made me recognize that this is a totally different and brand new world that we've been dropped in to. There is SOOOOO MUCH to take in, to learn, and to understand.
We left in kind of a daze, and not knowing what to think. I was upset, and didn't want to go home right away, so we went to a Mexican restaurant I've been wanting to try (which was ANOTHER disappointment. Good Mexican food is non-existent in Salt Lake. How I miss AZ sometimes.) And we just talked about the situation, and mostly what it means for our family in the immediate future, and for the next 5, 10, 15 years or more. It's going to be hard. But it's also going to be a joy. We want to provide experiences for our heart warrior that will allow him to live a fulfilled life in the time that he has. We talked about our dream of owning our farm (something that has been a dream of ours for a couple of years now). How magical would it be for a child to grow up on a farm, surrounded by fun animals, and have a peaceful upbringing away from the noise of the world? That would be the perfect retreat for our family. So...after the baby's surgeries and recover in about 3 years from now, that's where we'll be.
It's been three days since our appointment, and we've both had to take a lot of quiet time to process things together and on our own. I finally felt like today was a good day to sit down and write this all up. It's overwhelming. It's not my first choice. It's SO MUCH to think about. And...It's just the beginning.
I wonder, though, will he really need to live his life in a bubble? Away from crowds, away from germs? And will he really have academic challenges? Can he even go to regular school? Does he just need to be home schooled? Will we always need to live close to a hospital? Lots of things to think about...
What I do know to be true is this: (And, this was a conversation I had with one of my aunts today, who went through a similar stress when her baby had complications in utero.)
On one side, there is the doctor telling you "He will have this disability, he will have problems doing this independently, he will have a lower quality of life" etc., and then there is the other side of what God is telling your heart and mind. Our Heavenly Father is always right, because he always knows. The doctors can tell you what's likely, but that doesn't mean it's definite. Children are resilient, and their minds an bodies can do miraculous things. Parent's can help these kids be miraculous. God can heal and make things whole.
Our family feels comforted that this situation will be okay. Yes, there will be challenges, and yes, our baby will have a lower life expectancy. He probably won't outlive us. But we feel confident that he'll get through these first three surgeries, and that he will be able to overcome his obstacles, and that he can live a joyful and fulfilled life as a part of our family, no matter how long that is. We are also blessed to live in a world where medical knowledge and innovation keeps improving. Maybe in 5 years or 10 years, there will be a better solution and treatment for our child. We live in a great time.
MOVING FORWARD:
Our goal now is to figure out what our family vision of "normal" looks to us. How can we give our baby the same opportunities and experiences that our other children have? How will we take advantage of EVERY SINGLE DAY, and make each and every day the best day ever? How do we help our other children feel involved and loved and special, and not forgotten even though this baby will require a lot more time and care and attention? How do we balance that?
I know that through our faith in the Lord, we can be guided by His hand. He will help us to be the best parents possible for ALL of our children. He will inspire our minds and guide us to the places we need to go, the things or people we need to see in order to help each family member thrive and live a full and happy life. It's just putting in that 100% trust which can be tricky. But once we learn how to trust, the fear goes away and the peace stays, and no matter what the outcome, all will be well.
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