The other day when we saw our cardiologist, we made our next appointment to see him at 32 weeks. This visit is to take place at their downtown office which is located at the hospital we will be delivering at. This will allow us to meet our surgeon, as well as tour the campus, and meet the nicu and picu staff. When I spoke to the surgeons office on the phone about these appointments, the lady said they would be sending us some pamphlets and things in the mail. We received that package today.
Really, most of the information in this package is very helpful. They included a little book which is something to the tune of a Parents Guide to Heart Defects. In it, they give a ton of information about not only HLHS, but other CHD's as well. The book was well written, it gives the medical information we want to know, but takes it from super smart doctor speak to average joe speak, without boring us to death. It gives details on the Norwood procedure as well as the hybrid procedure, and a small amount of information on steps 2 and 3 as well. It also shows us a much more clear and realistic picture of the medical issues Wyatt faces, and how some of those would be treated.
The package also has information about the hospital itself, information on how to prepare your child and his or her siblings for surgery, what to bring to the hospital, and the guidelines set forth for the picu. Which, by the way, state that only DJ or I may stay the night in the picu with Wyatt, not both of us. It also states that Austyns visits have to be pre-arranged through Wyatt's nursing team, and that there are no visiting hours for DJ or I. It does not say how these rules differ from those of the nicu, so we will have to find that out when we go down there in August.
I am super thankful to have all this information, but it is forcing us to deal. In the end, I think this is a good thing. I tend to deal in increments. Some moments, I am dealing, and some moments, I am forcing myself to think about other things. Having all of this information at my finger tips helps to force me to make it real 100% of the time. And since we are only 15 weeks away from our due date, and may be induced 1 - 2 weeks before that, it is probably a good idea for me to force my brain to start thinking a bit differently.
When we met with our cardiologist, we talked briefly about having Austyn and Wyatt, and how we were planning on a rotating schedule: one night, DJ would spend the night at the hospital, the next night, I would, and the other would be home with Austyn. We talked about only having Austyn come visit at the hospital on Wyatt's better days, when it would be easier for Austyn to stomach the situation. And we briefly spoke about the costs and financial implications of such a serious medical condition. He told us that while this isn't a situation we can really prepare for, we are thinking through the right things. This gives me tremendous hope. It helps me feel better about myself as a mom- like I am doing this correctly- if that is even possible.
While today has been a very realistic day, I am happy to report that it hasn't been a terrible day. Maybe I am finally getting to the point where facing reality doesn't take away my ability to function as a human. Maybe.
I am Sahra, stay at home mom to two wonderful boys, Austyn (7-heart healthy) and Wyatt (1, Hypoplastic Left Heart Syndrome, HLHS) My husband, DJ, works hard to support us in both a civilian job, and as an Army Reservist. Follow us along, as we attempt to be not only a heart family, but a military family. Things are sure to get interesting! You can follow Wyatt's journey on Facebook, under our page "Mending Wyatt's Broken Heart"
Thursday, June 28, 2012
Monday, June 25, 2012
24 Week Cardiologist Appointment
We just finished up with our cardiologist. Can I just say...I have NO idea how they can see SO MUCH detail on a heart that is so small. Mind boggling. I guess this is why they make the big bucks, and we don't.
Given the circumstances, Wyatt's heart is doing well. His heart is growing where it should be and isn't growing where it shouldn't be (that's my take on a whole lot of medical words, anyway). Our Dr. said that there are a few cases where HLHS could be worse than other cases, and that we are not one of them. I don't want to go into too much detail on those, as I don't have all the facts, and I don't want to mis-inform anyone. He did say that if blood had made its way into Wyatt's left ventricle, allowing his ventricle to partially grow, and then stop, that that would have been worse. He also said that while Wyatt's aorta is underdeveloped, which is common with HLHS, it is not severely underdeveloped. So, in the end, it could be worse.
We asked him all the questions we could think of, and got the following answers:
Here is what we know for sure - Wyatt will be born cyanotic, and will require a catheter into his belly button in order to administer the drugs which will keep his PDA open. That is all we can be certain of.
Provided Wyatt is born crying and moving around, like you'd expect a healthy baby to be born, we will be able to have a somewhat normal post-delivery. DJ will be able to cut the cord, and we will be able to hold him. If his heart continues down the road it is on, we can expect that there won't be very much emergency medical treatment necessary. Surgery is still to be within the first 7 days.
Wyatt is in control here. We don't get to call the shots, he does. All of this depends on what Wyatt wants to do, when he wants to do it, and how well he wants to do it. So, hopefully, Wyatt is also on Team Wyatt.
We can expect Wyatt to have a NG tube for feedings, and there is a chance he won't even get to try eating by mouth prior to surgery. They want to give him that chance, but again, it all depends on Wyatt. He may also need a G tube down the road, which is pretty prevalent among HLHS kids.
He will be sedated at least 24 hours post surgery, depending on if they are able to close his sternum during surgery or not. He will be sedated even longer if his sternum has to remain open.
The fact that Wyatt has HLHS, combined with the fact that my labor with Austyn was so short (5 hours start to finish, 2 pushes), our cardiologist would really like for us to be induced. Our OB has already said that this is likely anyway. Everyone just wants us to be where we need to be when the time comes, rather than scrambling to get to a hospital because we are pretty sure he is going to come fast. Having a scheduled induction would also help us to plan ahead for Austyn's care, where he is going to be, etc.
There are still about a million and one unknowns. There are so many questions that no one is able to answer, because we have to just wait and see. In 8 weeks, we will go back to the Cardiologist, and have another fetal echo, as well as meet our surgeon, meet the NICU and PICU staff, and meet the neotalogists that will be a part of Wyatt's team. We will also tour the hospital campus this day. This will be a long, informational day for us, but will be tremendous in helping us to 'prepare' for Wyatt's arrival and surgeries.
At the end of the day, I am happy. Wyatt is doing well in there, and could be doing worse. Our cardiologist seems hopeful, and we are too. With all of your continued support, we will get through this, somehow. These positive days definitely help, and I love being able to post good news rather than sadness or depression.
Given the circumstances, Wyatt's heart is doing well. His heart is growing where it should be and isn't growing where it shouldn't be (that's my take on a whole lot of medical words, anyway). Our Dr. said that there are a few cases where HLHS could be worse than other cases, and that we are not one of them. I don't want to go into too much detail on those, as I don't have all the facts, and I don't want to mis-inform anyone. He did say that if blood had made its way into Wyatt's left ventricle, allowing his ventricle to partially grow, and then stop, that that would have been worse. He also said that while Wyatt's aorta is underdeveloped, which is common with HLHS, it is not severely underdeveloped. So, in the end, it could be worse.
We asked him all the questions we could think of, and got the following answers:
Here is what we know for sure - Wyatt will be born cyanotic, and will require a catheter into his belly button in order to administer the drugs which will keep his PDA open. That is all we can be certain of.
Provided Wyatt is born crying and moving around, like you'd expect a healthy baby to be born, we will be able to have a somewhat normal post-delivery. DJ will be able to cut the cord, and we will be able to hold him. If his heart continues down the road it is on, we can expect that there won't be very much emergency medical treatment necessary. Surgery is still to be within the first 7 days.
Wyatt is in control here. We don't get to call the shots, he does. All of this depends on what Wyatt wants to do, when he wants to do it, and how well he wants to do it. So, hopefully, Wyatt is also on Team Wyatt.
We can expect Wyatt to have a NG tube for feedings, and there is a chance he won't even get to try eating by mouth prior to surgery. They want to give him that chance, but again, it all depends on Wyatt. He may also need a G tube down the road, which is pretty prevalent among HLHS kids.
He will be sedated at least 24 hours post surgery, depending on if they are able to close his sternum during surgery or not. He will be sedated even longer if his sternum has to remain open.
The fact that Wyatt has HLHS, combined with the fact that my labor with Austyn was so short (5 hours start to finish, 2 pushes), our cardiologist would really like for us to be induced. Our OB has already said that this is likely anyway. Everyone just wants us to be where we need to be when the time comes, rather than scrambling to get to a hospital because we are pretty sure he is going to come fast. Having a scheduled induction would also help us to plan ahead for Austyn's care, where he is going to be, etc.
There are still about a million and one unknowns. There are so many questions that no one is able to answer, because we have to just wait and see. In 8 weeks, we will go back to the Cardiologist, and have another fetal echo, as well as meet our surgeon, meet the NICU and PICU staff, and meet the neotalogists that will be a part of Wyatt's team. We will also tour the hospital campus this day. This will be a long, informational day for us, but will be tremendous in helping us to 'prepare' for Wyatt's arrival and surgeries.
At the end of the day, I am happy. Wyatt is doing well in there, and could be doing worse. Our cardiologist seems hopeful, and we are too. With all of your continued support, we will get through this, somehow. These positive days definitely help, and I love being able to post good news rather than sadness or depression.
Friday, June 22, 2012
24 Week OB Appointment
Today we went and saw our OB for our 24 week appointment. It was such a relief to see Wyatt in there, moving about.
The doctor said that Wyatt is doing well. His over all growth is 4 days ahead of schedule, his belly growth is a week ahead of schedule, and my fundal height is at 26 weeks. His brain, stomach, kidneys, and the amniotic fluid all look good. He is growing like a weed in there. We learned today that along with his giant feet come some giant hands as well! Loooooong fingers!! :)
Our NP said to eat a high protein diet, as that is how to fatten a baby up, and we want him to be as big as possible, because he will tolerate surgery better, the larger he is. So high protein it is! Currently, they have him weighing in at 1 pound, 11 ounces, which is good.
We see the cardiologist on Monday for what I assume will be another fetal echocardiogram. We will see what he has to say as far as Wyatt's heart goes. The OB did say that there wasn't a change to Wyatt's heart, still pretty much nothing on the left hand side, which was expected. I think the cardiologist will dig further into blood flow, and make sure that Wyatt's PDA is growing normally, as that will be his lifeline until he has his first surgery.
Our fingers are crossed for more good news from the Cardiologist on Monday. We would love to hear that the remainder of Wyatt's heart is growing normally, and that his PDA is growing and functioning normally as well. We will be sure to update again after we have talked with him.
Wyatt's profile and arm today at 24 weeks, 2 days.
The photo on the left is Wyatt's legs crossed at the ankles, and the photo on the right is his perfect little foot :)
The doctor said that Wyatt is doing well. His over all growth is 4 days ahead of schedule, his belly growth is a week ahead of schedule, and my fundal height is at 26 weeks. His brain, stomach, kidneys, and the amniotic fluid all look good. He is growing like a weed in there. We learned today that along with his giant feet come some giant hands as well! Loooooong fingers!! :)
Our NP said to eat a high protein diet, as that is how to fatten a baby up, and we want him to be as big as possible, because he will tolerate surgery better, the larger he is. So high protein it is! Currently, they have him weighing in at 1 pound, 11 ounces, which is good.
We see the cardiologist on Monday for what I assume will be another fetal echocardiogram. We will see what he has to say as far as Wyatt's heart goes. The OB did say that there wasn't a change to Wyatt's heart, still pretty much nothing on the left hand side, which was expected. I think the cardiologist will dig further into blood flow, and make sure that Wyatt's PDA is growing normally, as that will be his lifeline until he has his first surgery.
Our fingers are crossed for more good news from the Cardiologist on Monday. We would love to hear that the remainder of Wyatt's heart is growing normally, and that his PDA is growing and functioning normally as well. We will be sure to update again after we have talked with him.
Thursday, June 21, 2012
Daddy
Since I am the one who posts our blogs, I don't want people to think that DJ isn't very involved in our family or anything. When I have rough days, I blog about them here. DJ Doesn't do that. He's sort of a typical guy, and just deals with it internally. He is hurting today, and I hope he knows that we support him, and that the hurt is to be expected.
DJ is, and continues to be, a wonderful father to Austyn, and will also be so for Wyatt. I wanted to share a letter that DJ wrote to us after we received Wyatt's diagnosis - for those of you who aren't friends with us on Facebook, or haven't read Wyatt's flyer:
"As the approaching storm draws near I gather my wits and prepare for battle. I know this is going to be a fight that will test my limits emotionally and physically. I put on my armor against this, knowing that it will crack during the onslaught. I am prepared for this, and when it does I will raise my shield and my sword and I will fight back with everything that I have.
Wyatt you don’t know me yet and may not have even heard my voice. I PROMISE you that I will give you everything I have and then some to make sure you thrive. You will grow and become strong as I protect you until the time comes when you do not need me to protect you.
Austyn, I know you don’t really know what’s going on and why your mom and I are so sad these past few days. Know that we love you and we will continue to give you everything we have. I make a promise to you that you will never feel neglected or that we love Wyatt more than you. You are my first son and I love more that you know.
Sahra I love you so much. I will be your mountain through all of this. I will do whatever it takes to make sure you three are taken care of. My armor will crack more than once during this fight and I will need your loving embrace to strengthen my armor and sharpen my sword.
My promises are made, my armor is on, and my sword is sharp so as of now I am ready for the approaching storm."
DJ is, and continues to be, a wonderful father to Austyn, and will also be so for Wyatt. I wanted to share a letter that DJ wrote to us after we received Wyatt's diagnosis - for those of you who aren't friends with us on Facebook, or haven't read Wyatt's flyer:
"As the approaching storm draws near I gather my wits and prepare for battle. I know this is going to be a fight that will test my limits emotionally and physically. I put on my armor against this, knowing that it will crack during the onslaught. I am prepared for this, and when it does I will raise my shield and my sword and I will fight back with everything that I have.
Wyatt you don’t know me yet and may not have even heard my voice. I PROMISE you that I will give you everything I have and then some to make sure you thrive. You will grow and become strong as I protect you until the time comes when you do not need me to protect you.
Austyn, I know you don’t really know what’s going on and why your mom and I are so sad these past few days. Know that we love you and we will continue to give you everything we have. I make a promise to you that you will never feel neglected or that we love Wyatt more than you. You are my first son and I love more that you know.
Sahra I love you so much. I will be your mountain through all of this. I will do whatever it takes to make sure you three are taken care of. My armor will crack more than once during this fight and I will need your loving embrace to strengthen my armor and sharpen my sword.
My promises are made, my armor is on, and my sword is sharp so as of now I am ready for the approaching storm."
It's almost like we take turns. I had a terrible day yesterday. I had a lot of hurt yesterday. A lot of stress, and worry, and sadness. And DJ is having some of those struggles today. I can't even put into words what it is like anticipating the birth of a very sick little boy - and we've only been at it a month. I would never wish this pain and worry on anyone, because some days, it is borderline unbearable.
Wednesday, June 20, 2012
Affording HLHS
I spend a good chunk of my time reading other HLHS children's stories, but have yet to find any stories where the parents discuss the financial burden(s) of HLHS. Maybe this is because in the end, all that matters is the health and safety of their child. Maybe this is because they prefer not to discuss these matters. I don't know. To me, the financial responsibilities of an hlhs baby are a part of the journey. It's something that parents worry about, stress about, cry about. And since part of the reason we keep this blog is to hopefully be some sort of guidance to another hlhs family, I feel it is important to share.
We have health insurance-not the greatest coverage- but we have it. Dj and Austyn are covered through DJ's work, and I carry my own policy through my work. My insurance comes with a $50 copay for specialist visits(OB's are specialists), a $3,000 deductible, and a $6,000 out of pocket maximum for the year, which the $3,000 deductible does not apply to. Because Wyatt has been diagnosed with HLHS, we have to be seen by a high risk OB, and have ultrasounds at each visit(which are subject to a $50 copay- but we're not exactly complaining, we love that we get to see our little guy at each visit). The OB charges a Global Billing fee of about $12,000 to deliver, which also covers all prenatal care. (for reference, the global billing fee through my former ob was about $2400). We also have to see our cardiologist at least monthly, which is another copay. When Wyatt is delivered, we will have the cardiologists fees, the hospital fees, the anesthesiologists fees, and the OB's global billing fee. That's just for me.
Wyatt will be covered under DJ's plan, and will have his own $3,000 deductible, and a $7,000 out of pocket max. According to my friend google, the cost of heart surgery alone in the Denver area is $60,000-$90,000. Plus hospital fees, anesthesiologists, nicu charges, meds, transport, etc. another HLHS mom told me that for 3 or 4 days of meds for her daughter it was some $14,000. Just for the meds.
Best case scenario for us between October and the end of the year, we'll have racked up $19,000 in medical debt. And that is IF everything gets covered correctly and the insurance companies aren't a nightmare.
Then, add to this equation that I will be basically quitting my job. We've decided as a family that it isn't feasible for us to both work full time days, and that someone needs to be with Wyatt and caring for him at all times, plus be there for Austyn as he struggles through this time as well. So that takes our approximately $70,000 a year income and chops it right in half. We will be a family of four trying to live on approximately $35,000 a year. I did some researching today to see what government programs we might qualify for- food stamps, Medicaid, section 8 housing- we don't qualify. And that was even including $1,000 a month in medical expenses. So we won't make enough to come close to supporting ourselves, and we'll make too much to get any help.
These are foreseeable expenses. There will be things that we don't see coming, extra ER visits, hospital stays, oxygen, monitors, etc. and we can't even fathom being able to afford the expenses we can expect. How are we going to do this? We have rent, car payments, student loans, credit cards......and we live a pretty basic life. We eat out occasionally, go camping a few times a year, and the rest is pretty much bills, gas, and food. How are we going to cut our income in half, and even remotely keep our heads above water?
We feel like failures. We failed to protect Wyatt from this world he hasn't even entered yet, and now were trying to prepare ourselves to fail to financially support our family. Without help, we are destined for failure. We realize that we're going to lose some material things- and that's fine. We even realize that we're probably going to have to declare bankruptcy. That's also fine. But how in the hell are we going to continue to survive until then? There is a possibility we will get SSI for Wyatt, which at best is some $800 a month, but that is subject to income requirements which are rather low. So there is no guarantee. A few people have offered to help how they can, my dad has offered to buy us King Soopers gift cards every two weeks to help us with groceries. Tremendous help! But still, not a life preserver.
I just feel so helpless. I want to be able to do better, provide better, and I simply can't. We dont know how to deal with it. Do we start "losing" material things now, trying to save up a few thousand, or do we hope we do end up with some sort of assistane, and stay where we're at now?
It's just another stressful, headache causing unknown that we face, and we're coming to realize that the next few years are going to be utterly stressful, no matter which way you look at it. It's absolutely exhausting stressing and worrying like this every moment of every day. It's exhausting putting on our fake smiles and pretending that everything is ok.
I just wish it all really was ok.
We have health insurance-not the greatest coverage- but we have it. Dj and Austyn are covered through DJ's work, and I carry my own policy through my work. My insurance comes with a $50 copay for specialist visits(OB's are specialists), a $3,000 deductible, and a $6,000 out of pocket maximum for the year, which the $3,000 deductible does not apply to. Because Wyatt has been diagnosed with HLHS, we have to be seen by a high risk OB, and have ultrasounds at each visit(which are subject to a $50 copay- but we're not exactly complaining, we love that we get to see our little guy at each visit). The OB charges a Global Billing fee of about $12,000 to deliver, which also covers all prenatal care. (for reference, the global billing fee through my former ob was about $2400). We also have to see our cardiologist at least monthly, which is another copay. When Wyatt is delivered, we will have the cardiologists fees, the hospital fees, the anesthesiologists fees, and the OB's global billing fee. That's just for me.
Wyatt will be covered under DJ's plan, and will have his own $3,000 deductible, and a $7,000 out of pocket max. According to my friend google, the cost of heart surgery alone in the Denver area is $60,000-$90,000. Plus hospital fees, anesthesiologists, nicu charges, meds, transport, etc. another HLHS mom told me that for 3 or 4 days of meds for her daughter it was some $14,000. Just for the meds.
Best case scenario for us between October and the end of the year, we'll have racked up $19,000 in medical debt. And that is IF everything gets covered correctly and the insurance companies aren't a nightmare.
Then, add to this equation that I will be basically quitting my job. We've decided as a family that it isn't feasible for us to both work full time days, and that someone needs to be with Wyatt and caring for him at all times, plus be there for Austyn as he struggles through this time as well. So that takes our approximately $70,000 a year income and chops it right in half. We will be a family of four trying to live on approximately $35,000 a year. I did some researching today to see what government programs we might qualify for- food stamps, Medicaid, section 8 housing- we don't qualify. And that was even including $1,000 a month in medical expenses. So we won't make enough to come close to supporting ourselves, and we'll make too much to get any help.
These are foreseeable expenses. There will be things that we don't see coming, extra ER visits, hospital stays, oxygen, monitors, etc. and we can't even fathom being able to afford the expenses we can expect. How are we going to do this? We have rent, car payments, student loans, credit cards......and we live a pretty basic life. We eat out occasionally, go camping a few times a year, and the rest is pretty much bills, gas, and food. How are we going to cut our income in half, and even remotely keep our heads above water?
We feel like failures. We failed to protect Wyatt from this world he hasn't even entered yet, and now were trying to prepare ourselves to fail to financially support our family. Without help, we are destined for failure. We realize that we're going to lose some material things- and that's fine. We even realize that we're probably going to have to declare bankruptcy. That's also fine. But how in the hell are we going to continue to survive until then? There is a possibility we will get SSI for Wyatt, which at best is some $800 a month, but that is subject to income requirements which are rather low. So there is no guarantee. A few people have offered to help how they can, my dad has offered to buy us King Soopers gift cards every two weeks to help us with groceries. Tremendous help! But still, not a life preserver.
I just feel so helpless. I want to be able to do better, provide better, and I simply can't. We dont know how to deal with it. Do we start "losing" material things now, trying to save up a few thousand, or do we hope we do end up with some sort of assistane, and stay where we're at now?
It's just another stressful, headache causing unknown that we face, and we're coming to realize that the next few years are going to be utterly stressful, no matter which way you look at it. It's absolutely exhausting stressing and worrying like this every moment of every day. It's exhausting putting on our fake smiles and pretending that everything is ok.
I just wish it all really was ok.
Fear
I think my fear has finally kicked in and taken over. In the past few days, I just haven't been able to shake the sinking feeling in my stomach. There are so many things that we don't know, so many unknowns, so many things to be afraid of.
What if Wyatt's heart is so underdeveloped he can't even have the 3 step surgeries? How hard is it going to be if we can't even hold our own son before he undergoes his first surgery, which there is no guarantee he will survive? How are we going to keep Austyn's life happy and positive and normal through all this? How are we going to be there every step of the way for Wyatt, and be there for Austyn, all the time? What if we don't get any help? How bad is this actually going to hurt, emotionally? How is this all going to affect our marriage? How do we stay sane, and keep Austyn from feeling hurt, or neglected, or left out? How do we shield Austyn from the pain of the situation? How do we protect Wyatt? Are we making the best possible choice by staying in Denver and delivering at P/SL?
The list goes on and on. And I am not even thinking about the difficulties we will go through regarding the change in our lives, the sacrifices that will need to be made, the new normal we will have to grow to know. While these things do matter, I feel like in the grand scheme, they are un-important.
I am terrified. I am worried that I am not strong enough for this, that I can't be the rock my family needs me to be. Already, the pressure is mounting. I feel guilt because I won't be working, so I won't be helping with food or bills or any of those necessities. I feel guilt because I won't be able to put Austyn to bed each and every night, and kiss him goodbye each and every morning for a while. I feel guilt because I won't be able to be there every day to hear about school, and help with homework, and do bathtime. I feel guilt that the financial burdens fall on DJ. I am worried that we will have to move, and that Austyn's world will no longer be as he knows it. I feel like there are 600,000 more things I should be doing to get us "ready" for all this, but I have absolutely no idea what those things are.
And at the same time, the pressure is tremendous. I feel alone - like I alone am to get our blog, and Wyatt's facebook page, and flyers out there. Like I am supposed to do all the research, all the learning. Be the one spending hours on the internet looking things up that I never imagined I'd need to know. Whether or not these are warranted feelings, they are there. And I feel like I am failing. It has only been a month since we received Wyatt's diagnosis, I realize, but I feel like I should be doing a better job at this somehow. I should be a bigger advocate. And all the while, I should be providing Austyn with as much fun and love as possible. I should be hiding my fear, and my pain from him, so he can continue being a happy, carefree 6 year old. I should be protecting him from the world I couldn't protect Wyatt from.
How the hell am I going to do this? I am trying to stay positive - realize that we have support, we have each other, we have a roof over our heads, food in the fridge, and activities on the calendar. We have smiles and laughter. We have love. But the pain is so tremendous, it is hard to let these positives take over. It is hard not to focus on the hard parts - the painful parts - because they are very, very real.
I really hope these feelings start to subside soon. I am exhausted. I need a mental break, and I don't know that I am going to get one. Maybe we will see our OB on Friday, and seeing Wyatt kick and turn and move his little arms and hands will help. Hopefully.
What if Wyatt's heart is so underdeveloped he can't even have the 3 step surgeries? How hard is it going to be if we can't even hold our own son before he undergoes his first surgery, which there is no guarantee he will survive? How are we going to keep Austyn's life happy and positive and normal through all this? How are we going to be there every step of the way for Wyatt, and be there for Austyn, all the time? What if we don't get any help? How bad is this actually going to hurt, emotionally? How is this all going to affect our marriage? How do we stay sane, and keep Austyn from feeling hurt, or neglected, or left out? How do we shield Austyn from the pain of the situation? How do we protect Wyatt? Are we making the best possible choice by staying in Denver and delivering at P/SL?
The list goes on and on. And I am not even thinking about the difficulties we will go through regarding the change in our lives, the sacrifices that will need to be made, the new normal we will have to grow to know. While these things do matter, I feel like in the grand scheme, they are un-important.
I am terrified. I am worried that I am not strong enough for this, that I can't be the rock my family needs me to be. Already, the pressure is mounting. I feel guilt because I won't be working, so I won't be helping with food or bills or any of those necessities. I feel guilt because I won't be able to put Austyn to bed each and every night, and kiss him goodbye each and every morning for a while. I feel guilt because I won't be able to be there every day to hear about school, and help with homework, and do bathtime. I feel guilt that the financial burdens fall on DJ. I am worried that we will have to move, and that Austyn's world will no longer be as he knows it. I feel like there are 600,000 more things I should be doing to get us "ready" for all this, but I have absolutely no idea what those things are.
And at the same time, the pressure is tremendous. I feel alone - like I alone am to get our blog, and Wyatt's facebook page, and flyers out there. Like I am supposed to do all the research, all the learning. Be the one spending hours on the internet looking things up that I never imagined I'd need to know. Whether or not these are warranted feelings, they are there. And I feel like I am failing. It has only been a month since we received Wyatt's diagnosis, I realize, but I feel like I should be doing a better job at this somehow. I should be a bigger advocate. And all the while, I should be providing Austyn with as much fun and love as possible. I should be hiding my fear, and my pain from him, so he can continue being a happy, carefree 6 year old. I should be protecting him from the world I couldn't protect Wyatt from.
How the hell am I going to do this? I am trying to stay positive - realize that we have support, we have each other, we have a roof over our heads, food in the fridge, and activities on the calendar. We have smiles and laughter. We have love. But the pain is so tremendous, it is hard to let these positives take over. It is hard not to focus on the hard parts - the painful parts - because they are very, very real.
I really hope these feelings start to subside soon. I am exhausted. I need a mental break, and I don't know that I am going to get one. Maybe we will see our OB on Friday, and seeing Wyatt kick and turn and move his little arms and hands will help. Hopefully.
Monday, June 18, 2012
Paranoia
Before we got Wyatt's diagnosis, I was paranoid. I just felt like something wasn't right, something was off, something was wrong. Now that we have his diagnosis and are going on 4 weeks of knowing this, I am 100 x more paranoid. Everything I do makes me think, makes me wonder. We spent yesterday at the Renaissance Festival and I couldn't help but think "Is my being out in this heat bad for him? Is walking around like this bad for him?" Then, once we were home and resting, I was freaked out because he didn't get super active the moment I laid down on the couch. Then, this morning, I went to put my shoes on and thought "Is bending over like this hurting him?" We see the OB on Friday, and I am waiting with baited breath for Friday to get here. I am terrified of going to the doctor, for fear that we will have another day like May 22nd, full of terrible, unimaginable news. But, at the same time, being at the doctor, hearing them tell us that Wyatt is doing well, seeing him move around in my belly, and hearing his heart beat makes me feel better for that day. I just want to know when I will get to breathe. When will I get to experience a day that isn't full of fear? I imagine this day is a long ways off. I anticipate this fear and paranoia I have is only going to get worse as his due date approaches, and then after his arrival. It is utterly exhausting worrying ALL the time.
Austyn had a great time at the Renaissance Festival! We went with my in-laws and tried to experience just about everything the festival had to offer. We saw an endangered cat show, ate some food, Austyn and my sister in law rode the King's Swing, we walked the shops, and had wax hands made. Austyn got some horns and a sword from my father in law, we got his wax hand made and a spider painted onto his arm. He got to spend the day with his family who he loves. And then he passed out about 3 seconds after we got in the car to leave. We tuckered that little guy out :) It was good to be out and spending time with him like that, seeing him have fun. We have this summer packed with activities, and DJ and I are starting to think that maybe we are over compensating for the times to come when we have to spend more time than not away from the house for a while to be with Wyatt. But, Austyn doesn't know it and he is thoroughly enjoying himself.
Austyn had a great time at the Renaissance Festival! We went with my in-laws and tried to experience just about everything the festival had to offer. We saw an endangered cat show, ate some food, Austyn and my sister in law rode the King's Swing, we walked the shops, and had wax hands made. Austyn got some horns and a sword from my father in law, we got his wax hand made and a spider painted onto his arm. He got to spend the day with his family who he loves. And then he passed out about 3 seconds after we got in the car to leave. We tuckered that little guy out :) It was good to be out and spending time with him like that, seeing him have fun. We have this summer packed with activities, and DJ and I are starting to think that maybe we are over compensating for the times to come when we have to spend more time than not away from the house for a while to be with Wyatt. But, Austyn doesn't know it and he is thoroughly enjoying himself.
We got some more of Wyatt's fliers handed out to a few more places, so that is awesome. Big thanks to you blog followers - we have 621 page views as of this morning, that is tremendous! I've got to start brainstorming more ideas to get Wyatt's story out there, and to be able to share with and help others. But, for now, its off to work for another long, tiring week.
After our OB appointment I will post a Wyatt update!
Thursday, June 14, 2012
Reaching Out
Typically, I am not the type of person to talk in detail about my life with strangers. I am a very outgoing person, but I don't generally trust people right off the bat, and don't want to share the personal parts of my life too in-depth. For whatever reason, after we received Wyatt's diagnosis, that sort of vanished. Almost immediately after we found out, one of my friends on Facebook told me about another of her friends, who has an infant with HLHS. I reached out to her via email, and we have now talked quite a few times about HLHS, and its effect on our families. Speaking with her has been absolutely tremendous for us, and I find myself thinking about them and her son often. We are rooting for success for them, and continuing to see her son thrive is wonderful.
Last weekend, my best friend's mom met another woman who also has an HLHS child, this one is a girl, and this family lives here in CO. I called her just the other day, and we ended up talking for an hour about HLHS, its effects, everything. Again, this is wonderful! I told her it would be great if we could come out and see them sometime, have coffee or whatever, since we're in the same state and only about an hour apart. Having these women to talk to who actually understand the thoughts I have, the worries I have....is a huge breath of fresh air.
Just today, I was talking to someone about Wyatt and he said "Oh, they'll have your little guy cured in no time". While I wasn't upset with him for the comment, and I rather appreciate his positivity, he, like most others, just doesn't get it. He doesn't get that THERE IS NO CURE. He doesn't get that this isn't a "oh, one simple surgery, and he's going to be fine" sort of a situation. He doesn't get that I honestly don't know if there will ever be a day I am not afraid, a day I am not paranoid, a day I will be able to breathe easy. So having these two ladies to talk to is SO helpful. And hopefully, if they ever need to vent, or whine, or cry, they too know that we have open ears, and understand where they are coming from - even though they are much further along in this process than we are.
I hope that at some point, I will be able to be helpful to a family. That at some point, someone will reach out to me, just as I have to these ladies, for support. Dealing with an HLHS diagnosis is HUGE, and it's scary, and frankly, it sucks. And I don't know how anyone could do it alone, without support. I hope to be that support to someone, someday, as if to "re-pay" the world for giving me the resources it has given me.
A quick happy note: We took Austyn to the amusement park for the first time ever last night and he LOVED it! He had so much fun! Well.......except on the Tilt -a- Whirl, he didn't like that one so much. He did so much better than we thought he was going to do. I honestly thought he would try the first ride, freak out, and we would leave. But, we ended up staying for about 4 hours. I didn't think about how miserable it would be for me to stand for 4 hours at an amusement park, after working a full day, 6 months pregnant....so that was a bummer. But, it was all totally worth it. Austyn had a genuinely good time, and it was another of those moments where life just seemed "normal", especially for him. As we left the park, he said "I am so happy, I want to live here!"
Last weekend, my best friend's mom met another woman who also has an HLHS child, this one is a girl, and this family lives here in CO. I called her just the other day, and we ended up talking for an hour about HLHS, its effects, everything. Again, this is wonderful! I told her it would be great if we could come out and see them sometime, have coffee or whatever, since we're in the same state and only about an hour apart. Having these women to talk to who actually understand the thoughts I have, the worries I have....is a huge breath of fresh air.
Just today, I was talking to someone about Wyatt and he said "Oh, they'll have your little guy cured in no time". While I wasn't upset with him for the comment, and I rather appreciate his positivity, he, like most others, just doesn't get it. He doesn't get that THERE IS NO CURE. He doesn't get that this isn't a "oh, one simple surgery, and he's going to be fine" sort of a situation. He doesn't get that I honestly don't know if there will ever be a day I am not afraid, a day I am not paranoid, a day I will be able to breathe easy. So having these two ladies to talk to is SO helpful. And hopefully, if they ever need to vent, or whine, or cry, they too know that we have open ears, and understand where they are coming from - even though they are much further along in this process than we are.
I hope that at some point, I will be able to be helpful to a family. That at some point, someone will reach out to me, just as I have to these ladies, for support. Dealing with an HLHS diagnosis is HUGE, and it's scary, and frankly, it sucks. And I don't know how anyone could do it alone, without support. I hope to be that support to someone, someday, as if to "re-pay" the world for giving me the resources it has given me.
A quick happy note: We took Austyn to the amusement park for the first time ever last night and he LOVED it! He had so much fun! Well.......except on the Tilt -a- Whirl, he didn't like that one so much. He did so much better than we thought he was going to do. I honestly thought he would try the first ride, freak out, and we would leave. But, we ended up staying for about 4 hours. I didn't think about how miserable it would be for me to stand for 4 hours at an amusement park, after working a full day, 6 months pregnant....so that was a bummer. But, it was all totally worth it. Austyn had a genuinely good time, and it was another of those moments where life just seemed "normal", especially for him. As we left the park, he said "I am so happy, I want to live here!"
Monday, June 11, 2012
Fading Away
Lately, I can't help but feel like Wyatt's diagnosis is just fading away in people's minds. When we first found out, it seemed that those who are close to us felt it was just as important as we felt it was. But now, a day shy of 3 weeks later, everyone seems to have moved on with life. Which, I understand, to a point. I understand that everyone has their own lives and that our problems and worries are not their problems and worries. I understand that while Wyatt's diagnosis was a shock to everyone, and saddened many people, most of those people really don't have to worry about it. That is our burden to carry. But as time continues, it seems even people's expectations of how I act, or how I carry myself, or the plans I make, etc. should reflect that Wyatt's diagnosis just faded away.
One of DJ's friends called this evening and asked how we were doing. DJ told him that we are "doing good" and that once we got past the shock of Wyatt's diagnosis, things have been better. I can only semi-agree with this. It is a bit better now that the news has settled its way into our lives, but I don't know that I can say I am doing well with it. I think as the shock turned into normal thoughts, the unknowns and questions, the wondering...they all took over. I have said before that it sort of bothers me when people say "there isn't a day that goes by that I don't think of....." when they are talking about a loved one who passed away years ago, or something - because I feel it is unrealistic to have done so. I can legitimately say that there hasn't been a single day that has gone by that I haven't thought about Wyatt, and his diagnosis, and how it relates to our lives.
I just find myself wondering now if this is all just going to fade away for everyone, while we are still in the throws of dealing with it. People seem to already expect us to make plans like we used to, without regard to cost (we are trying to cut back costs now to start to be more financially prepared for our upcoming and current medical bills), or without regard to our future (making plans for a few weeks before Wyatt's due date, when we really don't know when he will come, and now have to be VERY prepared for that). Are people just somehow going to start believing that Wyatt is just another baby who is going to be born, and come home just a few days later? And more importantly, are people going to be expecting me to carry myself in that manner? While I don't expect anyone to understand how we feel, or what we are going through, I do expect them to be understanding to the fact that our lives and our thoughts just don't mimic theirs.
I took Austyn to watch a little league baseball championship this weekend, as he just started T-Ball. While we were there, there were many toddlers who's big brothers were playing ball. My first thought was: "Man, I wonder what it is going to be like taking Austyn to all his games and having a toddler to deal with on top of it".....then about .2 second later my thought was: "Man, we aren't just going to have any toddler. Our toddler could need medical attention, tubes, oxygen...who knows". And while I am SO excited to see how Austyn does in baseball, to see how he progresses, if he comes to love it, if he is a great ball player, I am terrified of trying to be that supportive, cheering, at every game and every practice Baseball mom I want to be, while being an HLHS mom. Just like I am terrified of being a 6 year old 1st graders mom and simultaneously being a HLHS infant's mom. I do know that we have support, and people to help us, but these are things I feel like I am supposed to be doing, as these boys Mom, and I know that it just isn't feasible for me to do ALL of those things at once, at least not at first.
I can say that the past few days have been good. Probably some of the best few days we've had since hearing Wyatt's diagnosis. Friday, Austyn and I spent the afternoon at the pool with my Dad, and then we had a pretty relaxing evening. Saturday, we went to Austyn's first T-Ball practice, then met an old friend and her sons at the pool for some catch up/swim time. Then it was out to dinner and for ice cream! Sunday, we spent the entire day at the baseball tournament, where Austyn had an absolute blast. But I still feel emotionally and mentally spent. I am exhausted. Inside and out. I think my exhaustion today is helping to leave me feeling melancholy, like there is no wind in my sails. It's just one of those days where I would give absolutely anything to turn back time, and somehow change the events of our 20 week ultrasound - making things go the way we had imagined, rather than the way they went. One of those days where even though I know that there is nothing I can do to change the status of Wyatt's heart, I sure do wish there was.
One of DJ's friends called this evening and asked how we were doing. DJ told him that we are "doing good" and that once we got past the shock of Wyatt's diagnosis, things have been better. I can only semi-agree with this. It is a bit better now that the news has settled its way into our lives, but I don't know that I can say I am doing well with it. I think as the shock turned into normal thoughts, the unknowns and questions, the wondering...they all took over. I have said before that it sort of bothers me when people say "there isn't a day that goes by that I don't think of....." when they are talking about a loved one who passed away years ago, or something - because I feel it is unrealistic to have done so. I can legitimately say that there hasn't been a single day that has gone by that I haven't thought about Wyatt, and his diagnosis, and how it relates to our lives.
I just find myself wondering now if this is all just going to fade away for everyone, while we are still in the throws of dealing with it. People seem to already expect us to make plans like we used to, without regard to cost (we are trying to cut back costs now to start to be more financially prepared for our upcoming and current medical bills), or without regard to our future (making plans for a few weeks before Wyatt's due date, when we really don't know when he will come, and now have to be VERY prepared for that). Are people just somehow going to start believing that Wyatt is just another baby who is going to be born, and come home just a few days later? And more importantly, are people going to be expecting me to carry myself in that manner? While I don't expect anyone to understand how we feel, or what we are going through, I do expect them to be understanding to the fact that our lives and our thoughts just don't mimic theirs.
I took Austyn to watch a little league baseball championship this weekend, as he just started T-Ball. While we were there, there were many toddlers who's big brothers were playing ball. My first thought was: "Man, I wonder what it is going to be like taking Austyn to all his games and having a toddler to deal with on top of it".....then about .2 second later my thought was: "Man, we aren't just going to have any toddler. Our toddler could need medical attention, tubes, oxygen...who knows". And while I am SO excited to see how Austyn does in baseball, to see how he progresses, if he comes to love it, if he is a great ball player, I am terrified of trying to be that supportive, cheering, at every game and every practice Baseball mom I want to be, while being an HLHS mom. Just like I am terrified of being a 6 year old 1st graders mom and simultaneously being a HLHS infant's mom. I do know that we have support, and people to help us, but these are things I feel like I am supposed to be doing, as these boys Mom, and I know that it just isn't feasible for me to do ALL of those things at once, at least not at first.
I can say that the past few days have been good. Probably some of the best few days we've had since hearing Wyatt's diagnosis. Friday, Austyn and I spent the afternoon at the pool with my Dad, and then we had a pretty relaxing evening. Saturday, we went to Austyn's first T-Ball practice, then met an old friend and her sons at the pool for some catch up/swim time. Then it was out to dinner and for ice cream! Sunday, we spent the entire day at the baseball tournament, where Austyn had an absolute blast. But I still feel emotionally and mentally spent. I am exhausted. Inside and out. I think my exhaustion today is helping to leave me feeling melancholy, like there is no wind in my sails. It's just one of those days where I would give absolutely anything to turn back time, and somehow change the events of our 20 week ultrasound - making things go the way we had imagined, rather than the way they went. One of those days where even though I know that there is nothing I can do to change the status of Wyatt's heart, I sure do wish there was.
Saturday, June 9, 2012
Some Good, Some Bad
There will be good days, and there will be bad days. Thankfully, today was a good day.
We took Austyn to his first ever T-ball practice today, and he LOVED it. He also happened to do GREAT, and seems to really be a natural. Most of the kids on his team played on a team last year, and he still throws and bats better than the majority of them. We were super proud of him, and can't wait to see how he does throughout the season.
After we got some lunch, we took some of Wyatt's fliers to my hair stylist, who was willing to have them in her salon for her clients to see. It was nice to see her, and talk with her for a while, and hear her support for Wyatt and our family. It really does give me hope to talk to people who seem to be on the same page as us, and seem to completely support us.
We then met with a friend of mine who I haven't seen in about 6 years. It was great to catch up with her, and have her meet DJ. We spent about 3 hours at the pool letting our kids play, and talking. She was also very supportive, and wants to do what she can to help us - again, so uplifting! We are going to her younger son's baseball game tomorrow so Austyn can watch their team play, which will hopefully in the end get him more excited for his own baseball team.
In all, the past few days haven't been too bad. I spent a long time emailing back and forth with another mom with an HLHS baby the other day. Her son is 3 months old, and is doing well, given his circumstances. It is absolutely tremendous to talk to someone who actually understands how we're feeling, and what we're thinking. I can't think of a better resource. Her family is in Indiana, so unfortunately we are unable to meet her and her husband and their beautiful boy, but I am still so grateful for the contact we do have with her. When I first started talking with her, I felt guilty because I didn't want to interject my life and problems onto her while they are dealing with their own child's HLHS. But the more I talk to her, the less guilt I feel. It seems that maybe in some way, she finds some relief in helping us - maybe it gets her mind off her son for the moment. She really is the most tremendous person I think I have ever spoken to, and we are beyond grateful for the connection that is forming.
I continue to struggle to keep my daily life, and thoughts "normal" but I am doing alright, I guess. It's better when I am busy, and don't have time to just sit and think. Which is probably why today was such a good day. Hopefully, with us going to baseball tomorrow, it will be a good day too. I think these good days are what keep me going. Seeing Austyn having fun, and laughing and playing is the greatest thing ever, and I think I need that stuff. Otherwise, I would probably end up curled up in a ball, refusing to function. And that isn't how I want to deal with all this. I have been feeling pretty positive here lately. Feeling like there is a ton of hope for Wyatt's case, feeling like somehow, someway, we are going to get through this. If I can just keep believing in that, I think the days will continue to go well. But I know that there are going to be bad days. And I accept that. I am just going to enjoy the good days as much as possible to make up for it.
We took Austyn to his first ever T-ball practice today, and he LOVED it. He also happened to do GREAT, and seems to really be a natural. Most of the kids on his team played on a team last year, and he still throws and bats better than the majority of them. We were super proud of him, and can't wait to see how he does throughout the season.
After we got some lunch, we took some of Wyatt's fliers to my hair stylist, who was willing to have them in her salon for her clients to see. It was nice to see her, and talk with her for a while, and hear her support for Wyatt and our family. It really does give me hope to talk to people who seem to be on the same page as us, and seem to completely support us.
We then met with a friend of mine who I haven't seen in about 6 years. It was great to catch up with her, and have her meet DJ. We spent about 3 hours at the pool letting our kids play, and talking. She was also very supportive, and wants to do what she can to help us - again, so uplifting! We are going to her younger son's baseball game tomorrow so Austyn can watch their team play, which will hopefully in the end get him more excited for his own baseball team.
In all, the past few days haven't been too bad. I spent a long time emailing back and forth with another mom with an HLHS baby the other day. Her son is 3 months old, and is doing well, given his circumstances. It is absolutely tremendous to talk to someone who actually understands how we're feeling, and what we're thinking. I can't think of a better resource. Her family is in Indiana, so unfortunately we are unable to meet her and her husband and their beautiful boy, but I am still so grateful for the contact we do have with her. When I first started talking with her, I felt guilty because I didn't want to interject my life and problems onto her while they are dealing with their own child's HLHS. But the more I talk to her, the less guilt I feel. It seems that maybe in some way, she finds some relief in helping us - maybe it gets her mind off her son for the moment. She really is the most tremendous person I think I have ever spoken to, and we are beyond grateful for the connection that is forming.
I continue to struggle to keep my daily life, and thoughts "normal" but I am doing alright, I guess. It's better when I am busy, and don't have time to just sit and think. Which is probably why today was such a good day. Hopefully, with us going to baseball tomorrow, it will be a good day too. I think these good days are what keep me going. Seeing Austyn having fun, and laughing and playing is the greatest thing ever, and I think I need that stuff. Otherwise, I would probably end up curled up in a ball, refusing to function. And that isn't how I want to deal with all this. I have been feeling pretty positive here lately. Feeling like there is a ton of hope for Wyatt's case, feeling like somehow, someway, we are going to get through this. If I can just keep believing in that, I think the days will continue to go well. But I know that there are going to be bad days. And I accept that. I am just going to enjoy the good days as much as possible to make up for it.
Thursday, June 7, 2012
Trailing Thoughts
I have a mousepad on my desk at work, that has Austyn's annual pictures from his 1 year old picture to his Kindergarten picture. There are many times when I am at work, I will look at it and just smile, thinking about him. Today, I found myself looking at the picture from when he was one. He is laying on his tummy, with his arms crossed in front of him, smiling a lil baby smile. This led me to think about Wyatt...I wonder if he will be able to lay on his stomach for pictures, or maybe he won't be able to. But there isn't a part of me that thinks he won't have those 1 year pictures taken, just like Austyn did. I can't decide if this is good or bad.
I am unsure if I am hopelessly optimistic, or if I just haven't come to terms with reality. I tend to live in this little bubble of happy that tells me that we are facing hard times, and that the times will surely be harder than we are imagining, but that everything is going to be okay. I don't know if this is a "gut feeling" or denial, to be honest.
The entirety of this pregnancy, I have been a paranoid mess. I thought I was paranoid about Wyatt because I spent so much time on the bump's forums while we were trying to get pregnant, and I read so many stories about women who couldn't get pregnant, or had multiple miscarriages, etc. I figured I had just freaked myself out. After we got Wyatt's diagnosis, I wondered if my body knew something was wrong and was trying to tell me. Was that all just a huge "gut feeling" that I didn't listen close enough to? Am I experiencing a new "gut feeling" now, or am I just refusing to face the harsh realities of the HLHS diagnosis.
I have "liked" multiple heart defect awareness groups on Facebook, so any time they share someone's story, it shows up on my news feed. Some days, these are really triumphant stories, and some days they are heart wrenching stories. As hard as some of them are to read - I think this is good for me. I think it forces me to see what a lot of the possible outcomes of surgery are, rather than just living in my happy bubble all the time. I told DJ I plan to continue reading these, so I don't spend the rest of the pregnancy with a "everything is going to be fine" attitude, and then hit a brick wall head on at the first sight of any complications.
I guess in the end, I just don't know how to feel. I don't know what to think. I don't know what to do. It's as if I'm at a loss - all the time. There are still many moments when it doesn't seem real - it can't be true that this is all happening in MY life, can it? Of course, I now quickly come back to reality in those moments.
Little Wyatt- Daddy, Austyn, and I love you SO much it hurts. We are so excited to meet you when you are ready to meet us, and we can't wait to snuggle you, and kiss you. Although, big brother isn't real fond of the idea of kissing my belly while you're in there. :) Daddy loves to give you kisses though, and I would if I could reach. I wish I could do this all for you, and go through it all rather than you. But I will be right here, next to you, every step of the way. We have so many friends and family members who love us and support us, and they will all be there too. We love you to the moon and back, and always will. I hope that as you grow up, you come to learn that. You just kicked - you must know I am thinking about you :). I love you little bubba, so so much!
I am unsure if I am hopelessly optimistic, or if I just haven't come to terms with reality. I tend to live in this little bubble of happy that tells me that we are facing hard times, and that the times will surely be harder than we are imagining, but that everything is going to be okay. I don't know if this is a "gut feeling" or denial, to be honest.
The entirety of this pregnancy, I have been a paranoid mess. I thought I was paranoid about Wyatt because I spent so much time on the bump's forums while we were trying to get pregnant, and I read so many stories about women who couldn't get pregnant, or had multiple miscarriages, etc. I figured I had just freaked myself out. After we got Wyatt's diagnosis, I wondered if my body knew something was wrong and was trying to tell me. Was that all just a huge "gut feeling" that I didn't listen close enough to? Am I experiencing a new "gut feeling" now, or am I just refusing to face the harsh realities of the HLHS diagnosis.
I have "liked" multiple heart defect awareness groups on Facebook, so any time they share someone's story, it shows up on my news feed. Some days, these are really triumphant stories, and some days they are heart wrenching stories. As hard as some of them are to read - I think this is good for me. I think it forces me to see what a lot of the possible outcomes of surgery are, rather than just living in my happy bubble all the time. I told DJ I plan to continue reading these, so I don't spend the rest of the pregnancy with a "everything is going to be fine" attitude, and then hit a brick wall head on at the first sight of any complications.
I guess in the end, I just don't know how to feel. I don't know what to think. I don't know what to do. It's as if I'm at a loss - all the time. There are still many moments when it doesn't seem real - it can't be true that this is all happening in MY life, can it? Of course, I now quickly come back to reality in those moments.
Little Wyatt- Daddy, Austyn, and I love you SO much it hurts. We are so excited to meet you when you are ready to meet us, and we can't wait to snuggle you, and kiss you. Although, big brother isn't real fond of the idea of kissing my belly while you're in there. :) Daddy loves to give you kisses though, and I would if I could reach. I wish I could do this all for you, and go through it all rather than you. But I will be right here, next to you, every step of the way. We have so many friends and family members who love us and support us, and they will all be there too. We love you to the moon and back, and always will. I hope that as you grow up, you come to learn that. You just kicked - you must know I am thinking about you :). I love you little bubba, so so much!
Wednesday, June 6, 2012
Strength
It has been another rough day. I felt more defeated this morning than I felt yesterday. But, we made some progress today. Our fliers came off the printer, and were delivered to me. I was able to leave work a bit early, and take some fliers to my old office, so they could be posted. I used to work for a large corporation, so hundreds of people should see them there. I also got a few mailed out to friends and family who are too far away to drive to. Hopefully, these help to get the word out about Wyatt, and HLHS.
I went to the little heart's website this morning, and found a case study about how they are correlating the fontan procedure to liver failure. Bummer. Another hurdle to potentially cross down the road. Ugh. I also was talking to my old boss, and his niece was born with HLHS about 12 years ago. She unfortunately was one of the ones who couldn't even be operated on, and while she waited for a heart for transplant, she passed away. She lived about 6 weeks. Poor baby. Double Ugh.
There are so many things we are planning to ask our OB and our Cardiologist the next time we see them, but I imagine no one has the answers to the questions we have.
*Do we know for sure how severe Wyatt's HLHS is? I.e. could he possibly be one who can't have the 3 staged surgeries?
*Will I be able to breast feed or pump for him, or is that option pretty much out the window?
*Is there any information at this point that can help us to understand what to expect after birth, or are we just left waiting to see how things go?
We are trying so hard to be prepared for all of this, and yet we have NO idea how to prepare. None whatsoever. Triple Ugh.
People keep telling me things like "Good thing you're so strong"...and I really appreciate the support. But, the thing is, I don't feel very strong. DJ told me today "Hang in there babe", and I feel like I am hanging in there, but only by a thread. And I am sure there will be a day when that thread is going to break. There will come a day where I just sit down and cry, I'm sure. A few times. It's bound to happen. And I am sure after I am done, I will feel better. Some sort of make shift release. But until then, I feel numb. There are day to day tasks that I get done each day, and then looking back on the day, I don't really remember doing them. Mundane things that don't matter much anyway, but it is clear to me that I am running on auto pilot. I have been absolutely exhausted the past few days. Exhaustion to the point where my eyes burn just from keeping them open, and I imagine I am just mentally fried. We still go to bed at a decent hour, we still get a decent amount of rest. I think emotionally and mentally, I am spent. And it hasn't even really started.
I keep reminding myself that we are not the only family out there who has been through a situation like this, nor are we the last. We are also not the worst off. Of course, the situation seems HUGE to us, because it is our lives, our son, we are dealing with. And to everyone else who had a CHD diagnosis, or a child with developmental disabilities, or a physical handicap or deformity, it was huge to them too. I totally understand this. Everything is relative.
I am hoping that we can continue to make progress in our "preparations" for Wyatt's arrival, and that the day to day gets a little easier to deal with between now and October. I hope we get a little reprieve - a calm before the storm. And I hope we end up finding other families to connect with. Other families who are feeling the way we feel, dealing with the things we are dealing with, who can relate. I also hope our support system continues to grow, Wyatt's facebook page gets out there to more and more people, and we find ourselves surrounded by an Army of Wyatt supporters.
In the long run I would love to see our story help others. CHD's are the #1 birth defect, take more casualties than all types of childhood cancers combined, and yet the funding for CHD research is 5 times less than that of cancer. I hope that our story, combined with all the other families stories can help to change that, someday.
I went to the little heart's website this morning, and found a case study about how they are correlating the fontan procedure to liver failure. Bummer. Another hurdle to potentially cross down the road. Ugh. I also was talking to my old boss, and his niece was born with HLHS about 12 years ago. She unfortunately was one of the ones who couldn't even be operated on, and while she waited for a heart for transplant, she passed away. She lived about 6 weeks. Poor baby. Double Ugh.
There are so many things we are planning to ask our OB and our Cardiologist the next time we see them, but I imagine no one has the answers to the questions we have.
*Do we know for sure how severe Wyatt's HLHS is? I.e. could he possibly be one who can't have the 3 staged surgeries?
*Will I be able to breast feed or pump for him, or is that option pretty much out the window?
*Is there any information at this point that can help us to understand what to expect after birth, or are we just left waiting to see how things go?
We are trying so hard to be prepared for all of this, and yet we have NO idea how to prepare. None whatsoever. Triple Ugh.
People keep telling me things like "Good thing you're so strong"...and I really appreciate the support. But, the thing is, I don't feel very strong. DJ told me today "Hang in there babe", and I feel like I am hanging in there, but only by a thread. And I am sure there will be a day when that thread is going to break. There will come a day where I just sit down and cry, I'm sure. A few times. It's bound to happen. And I am sure after I am done, I will feel better. Some sort of make shift release. But until then, I feel numb. There are day to day tasks that I get done each day, and then looking back on the day, I don't really remember doing them. Mundane things that don't matter much anyway, but it is clear to me that I am running on auto pilot. I have been absolutely exhausted the past few days. Exhaustion to the point where my eyes burn just from keeping them open, and I imagine I am just mentally fried. We still go to bed at a decent hour, we still get a decent amount of rest. I think emotionally and mentally, I am spent. And it hasn't even really started.
I keep reminding myself that we are not the only family out there who has been through a situation like this, nor are we the last. We are also not the worst off. Of course, the situation seems HUGE to us, because it is our lives, our son, we are dealing with. And to everyone else who had a CHD diagnosis, or a child with developmental disabilities, or a physical handicap or deformity, it was huge to them too. I totally understand this. Everything is relative.
I am hoping that we can continue to make progress in our "preparations" for Wyatt's arrival, and that the day to day gets a little easier to deal with between now and October. I hope we get a little reprieve - a calm before the storm. And I hope we end up finding other families to connect with. Other families who are feeling the way we feel, dealing with the things we are dealing with, who can relate. I also hope our support system continues to grow, Wyatt's facebook page gets out there to more and more people, and we find ourselves surrounded by an Army of Wyatt supporters.
In the long run I would love to see our story help others. CHD's are the #1 birth defect, take more casualties than all types of childhood cancers combined, and yet the funding for CHD research is 5 times less than that of cancer. I hope that our story, combined with all the other families stories can help to change that, someday.
Tuesday, June 5, 2012
Here comes the defeat
Some days I feel really strong. I feel like we can handle this, even though it is going to be difficult. Today is not one of those days.
I decided to log into my health insurance's website to see if the 3 appointments we had 2 weeks ago had been processed yet. They have. All 3 appointments require a co-pay, which was to be expected. That's a total of $150. Not too shabby. Then, there is a bill from the OB we were originally seeing, for all the appointments we had before she sent us to our new high risk OB. I guess the way it works now-a-days is OB's bill under a "Global Billing Fee" which is a flat fee for all pre and post-natal OB care, and delivery. Since our original OB won't be delivering Wyatt, they had to bill us for the appointments we had with them. This comes to about $500. Which is subject to our deductible: i.e. all out of pocket cost for us, until we reach our deductible, then they would cover 80% of the bills.
While I realize that a total of $650 in medical bills is small compared to the bill we would have received for the global fee after delivery, and is teeny tiny compared to the bills we will receive after Wyatt's arrival and surgeries.....that is the problem. Paying the $650 is going to suck. Let alone all those other bills hovering over our heads. But we don't want to start racking up the medical debt now. Obviously we need to get these guys paid so we are still on a clean slate come October (hopefully).
We've discussed the different ways our lives may change financially because of our upcoming medical costs and the fact that I won't be working. We've considered things like needing to move in with family, having to get rid of a car, etc. It's not as if we don't anticipate the change. I think just seeing these bills from 3 days of care in a doctor's office made it soooo very real for me. We are just average joe's. Normally, we work just to get by. Now, what the hell are we going to do?
In the end, it doesn't matter what this is all going to cost us, or what material things we might lose. It's just money, and it's just stuff. Stuff that doesn't matter. The most important thing is quality care for Wyatt, and we will do whatever it takes to make sure he gets that. But man, just thinking about the bills can be quite overwhelming.
Last night at bedtime I read the book "Love you Forever" to Austyn, which my sister - in -law bought for Wyatt. Since then, I have had the mother's song stuck in my head. I think I will focus on that rather than these darn bills:
I'll love you forever
I'll like you for always
As long as I'm living
My baby you'll be
I decided to log into my health insurance's website to see if the 3 appointments we had 2 weeks ago had been processed yet. They have. All 3 appointments require a co-pay, which was to be expected. That's a total of $150. Not too shabby. Then, there is a bill from the OB we were originally seeing, for all the appointments we had before she sent us to our new high risk OB. I guess the way it works now-a-days is OB's bill under a "Global Billing Fee" which is a flat fee for all pre and post-natal OB care, and delivery. Since our original OB won't be delivering Wyatt, they had to bill us for the appointments we had with them. This comes to about $500. Which is subject to our deductible: i.e. all out of pocket cost for us, until we reach our deductible, then they would cover 80% of the bills.
While I realize that a total of $650 in medical bills is small compared to the bill we would have received for the global fee after delivery, and is teeny tiny compared to the bills we will receive after Wyatt's arrival and surgeries.....that is the problem. Paying the $650 is going to suck. Let alone all those other bills hovering over our heads. But we don't want to start racking up the medical debt now. Obviously we need to get these guys paid so we are still on a clean slate come October (hopefully).
We've discussed the different ways our lives may change financially because of our upcoming medical costs and the fact that I won't be working. We've considered things like needing to move in with family, having to get rid of a car, etc. It's not as if we don't anticipate the change. I think just seeing these bills from 3 days of care in a doctor's office made it soooo very real for me. We are just average joe's. Normally, we work just to get by. Now, what the hell are we going to do?
In the end, it doesn't matter what this is all going to cost us, or what material things we might lose. It's just money, and it's just stuff. Stuff that doesn't matter. The most important thing is quality care for Wyatt, and we will do whatever it takes to make sure he gets that. But man, just thinking about the bills can be quite overwhelming.
Last night at bedtime I read the book "Love you Forever" to Austyn, which my sister - in -law bought for Wyatt. Since then, I have had the mother's song stuck in my head. I think I will focus on that rather than these darn bills:
I'll love you forever
I'll like you for always
As long as I'm living
My baby you'll be
Monday, June 4, 2012
Sunday, June 3, 2012
The Wyatt Sauers Foundation
For anyone looking for the information for Wyatt's bank account, here it is:
Wyatt's account has been opened at TCF Bank. Any Colorado branch can accept deposits into this account. All you have to tell the banker is that you'd like to make a deposit to the Wyatt Sauers Foundation.
Deposits can also be made via wire transfer, from anywhere in the world. In order to do so, you will need the following information:
Additionally, there is a "Donate" button on the top left hand corner of our blog. This button is set up through paypal. Those of you who are Paypal members can send donations directly to my paypal account, which will then get transferred into Wyatt's account at TCF. This way, if you prefer to send money via Credit or debit card, you can do so!
If any other information is needed, please comment on this post and I will get you the information ASAP.
Thanks!!
Wyatt's account has been opened at TCF Bank. Any Colorado branch can accept deposits into this account. All you have to tell the banker is that you'd like to make a deposit to the Wyatt Sauers Foundation.
Deposits can also be made via wire transfer, from anywhere in the world. In order to do so, you will need the following information:
Additionally, there is a "Donate" button on the top left hand corner of our blog. This button is set up through paypal. Those of you who are Paypal members can send donations directly to my paypal account, which will then get transferred into Wyatt's account at TCF. This way, if you prefer to send money via Credit or debit card, you can do so!
If any other information is needed, please comment on this post and I will get you the information ASAP.
Thanks!!
An Idle Mind Is The Devil's Playground
That's what they say, right? It seems to be ringing true, at least for me. I am finding that so long as I am busy, being productive, doing things that either make a difference, or will in the future, I am doing well.
We made some tremendous headway this weekend. My best friend had already talked to her bank about setting up a deposit only account in order to have a safe place to save any money we could raise for Wyatt. So we went to the bank, and opened up the account. We also finished Wyatt's flyers (huge thanks to Rachel for that and all her amazing ideas), which turned out wonderfully! I am excited to get those sent off to the printers tomorrow, and be able to start handing them out. They turned out absolutely beautifully! We got a good plan hashed out for the baby shower as well. Which, speaking of the baby shower, I am starting to be excited again. I was feeling a bit down about the shower, worried that it was going to be a sad, somber day, and I am realizing that everyone is able to see the medical side of Wyatt's situation, but they are also able to see that we are still absolutely excited to meet this little man. We are still able to celebrate at the baby shower, and be excited for Wyatt's arrival. I think the shower is going to turn out super cute, and I think it will be a great day! DJ and I also got Austyn's baseball gear for his first ever baseball season, starting next weekend. I am excited to see Austyn give it a go, and make new friends too. I think he is going to have a blast, and since he has loved baseball since he was 2, I really hope he loves it. But, if not, I hope he has a great time anyway, and we will move on to trying out the next activity next season.
Austyn recently got to spend time with just about everyone he loves, which has been awesome. He went to Kansas for 5 days with his grandma, and had a blast, even though he came home covered in chigger bites! Then, he got a nice, relaxing, normal night at home with us, which was followed by a full day with his best friends, my best friend's kids, and a sleepover at their house. Then it was back home with us, over to DJ's parent's house, then to my Dad's house. He had a super full weekend, but loved every minute of it. I love seeing him surrounded with love like that. It just makes me smile.
Today is a good day. Tomorrow might be a bad one, who knows. But knowing that there will be more bad days isn't something I am going to dwell on. I have spent enough time dwelling, enough time being mad, and I need to cherish these wonderful days. I've recently been upset with a select few people who seemed less than supportive of the decisions we've made regarding Wyatt. I think my last post reflected some of the anger I was dealing with. I am happy to say that it seems both of these parties seem to be more supportive now, and seem to be coming to terms with the fact that sometimes life is just hard. Sometimes we get put in a situation we would have never dreamed of, and just have to do our best to get through it. We don't need easy, we just need possible. And that's what we've currently got, so I'll take it.
I seem to have some sort of peace today. I just sat and crocheted the beginning of Wyatt's blanket, and I felt good, knowing that I was creating this blanket that we can have with us at the hospital, for Wyatt to cuddle with, that smells like us, and smells like home. I felt like, in that moment, I was doing what I should be doing. We recently watched that movie "We Bought A Zoo" and afterwards, I said that I felt like I was supposed to do something profound, like buy a zoo and save a bunch of animals. We all agreed that wouldn't be the best idea for me. Haha. But, maybe this is my profound thing. Maybe being Wyatt's mommy was the thing I was meant to do, to make some sort of a difference in this thing we call life. Maybe some part of the universe decided that DJ and I were meant to be the parents to an HLHS child, and to Austyn. Maybe it decided that we were the best equipped to do so, and that we can handle it. I have no idea, but today, I just sort of feel like it is all going to be okay, and while there will be struggles, we are all going to make it. We are going to be the greatest family we could be, with more love for each other than we can even imagine. I hope this is true.
Today a lady told me, "There is hope...it's not a lost cause" and I couldn't agree more.
Subscribe to:
Posts (Atom)