I think I let myself believe far too strongly that life was going to be easy when we got home from the hospital after Wyatt's Glenn. I let myself believe that I would be getting adequate amounts of sleep, and that I would be able to get the "other" things done around the house each day (i.e. laundry, dishes, cleaning, etc.). HA! Hilarious. It didn't pan out, that's for sure. The first few days we were home were extremely daunting - Wyatt was in pain, and all around un happy, we were exhausted, and paranoid. There were times where we both just slept on the couch because it was easier than trying to go to bed. But, once Wyatt's pain got under control and he wasn't needing around the clock Tylenol, and hadn't taken his stronger pain meds in a few days, I figured things would start to go back to normal.
Tomorrow is 14 days post Glenn, and we are definitely not back to normal yet. Wyatt's sleeping patterns are a wreck. He won't sleep more than 2 hours at a time, day or night. Prior to surgery, he slept in his bassinet just fine, and now we are trying to work back towards that, but a lot of times we have to sleep on the couch with him, or he won't sleep. He also likes to kick, which keeps him awake, and I have resorted to holding his legs against my body to make them feel snuggled, so he won't kick. He has also become VERY sensitive. It's like all of his senses are on edge. He is jumpier at noises than he used to be, and he only likes his Mommy and Daddy right now. No one else has tried to hold him, but even just getting near him makes him pout and cry.
Needless to say - I am exhausted. Today is only the second day that DJ is back to work, and I am already ready for it to be Friday - simply so I can sleep more than 3 hours in my bed. I know that this phase we are in is going to pass, and that it isn't forever, so I am not too entirely worried, but, still. Yikes.
On other fronts - we are in the process of filing bankruptcy. I suppose that isn't the sort of thing most people would share on their blog, huh? Oh well - the point of all this is for other heart parents/potential heart parents to see how life REALLY is - and this is part of it. We will be giving both of our vehicles up in the bankruptcy (they are leased) so we had to purchase a vehicle for me to drive the boys in. We found a decent Ford Escape, and thankfully, the title transfer and emissions tests went through fine. Wyatt is also about to be too tall for his infant car seat. We have a Grace SnugRide, which only goes up to 29 inches, and Wyatt's only got 2-3 inches left, so I had to buy him a convertible car seat. And, we bought a bath that doubles as a scale so I can continue to monitor his weight. Austyn is doing very well, and DJ is getting back into the swing of things at work. I am re-adjusting to the fact that my reflection in the mirror includes bags under my eyes once again, and trying to be more than a zombie throughout the day, while also keeping my cool for 16 hours at a time while dealing with Wyatt, and trying to calm him down from his frequent fits.
At the end of the day - things are going fine, they're just frustrating for right now. Wyatt sees his cardiologist this afternoon, so I will be sure to post about that sometime afterwards :)
Be well!
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"
Tuesday, February 26, 2013
Friday, February 15, 2013
The Glenn, continued
Post op hasn't been fun for any of us, especially Wyatt. The thing about the Glenn is that they remove the sano shunt (or BT shunt, depending on your surgeons decision at the time of the Norwood) and replace it with the Bi-Directional Glenn shunt. When Wyatt had the sano shunt, his blood didn't have much of a choice as to where it went. The sano shunt told it what to do. Now that he has the Glenn shunt, blood can go two different directions. Now, we want the blood to go to his head and upper limbs and passively flow to his lungs. But since the blood can take this new path- it does- and it gets stuck, so to speak. This leaves Wyatt's head and upper body full of blood that isn't super oxygenated, leaving him swollen, blue, and with one hell of a headache. His intensivist described it to us as if we were to lay upside down and let the blood pool in our heads. You know how your head starts to hurt after about 30 seconds of that? Wyatt's blood has even doing that for 2 days. Can you imagine how he feels?!
So, Wyatt's head hurts. A lot. More than a lot. And his chest hurts. Because they cut it open, opened up his rib cage, and dug around in there for a few hours before sewing everything back up. His left foot, both wrists, and neck hurt from his IV's. His tummy hurts- were giving him pretty heavy duty pain killers, which causes constipation, and his intestines didn't do much for a day or so during surgery. The poor kid needs a good poop. His right side hurts, from where they cut a slit and inserted a tube for blood drainage. I hear those chest tubes hurt like hell. His throat hurts, from being intubated. His lungs hurt, from being intubated. This makes him cough, which in turn hurts his chest and his throat. So, yeah, it's safe to say he is in a lot of pain.
His doctors and nurses are great about pain management. I saw on the computer today they rated his pain a 7/10. He is receiving Tylenol with a narcotic in it every 4 hours. He also has orders for dilaudid every 2 hours. They also gave him a dose of Ativan today to help calm him down. That's like popping a Xanax. And still, he can't get comfortable.
He has started eating, thankfully. And his labs and numbers look pretty good. They ran a CBC this morning (complete blood count) and that came back a little low so he got FFP (fresh frozen plasma). His O2 sats are good- unless he's crying. It is to be expected that he will drastically de-sat when crying, until his body gets used to its new plumbing. He is on a lot of oxygen. 100% O2 at 2 liters of flow. He may have to come home on oxygen for a few weeks, we don't know yet. His head is about twice it's normal size. His face, eyes, and neck are very swollen. This is expected to go away. But, he isn't requiring much in the way of meds. At two days post Norwood, he was still on 4 or 5 meds to help his heart function. At two days post Glenn, he is on none. They turned his Milrinone off today, and he was only on epinephrine for a short time. This time around he never got dopamine, and they haven't started any Enalapril. He is getting some calcium and potassium to make up for post op deficiencies. He is getting heparin to thin his blood. Colace to help him poo. Obviously the pain meds. Prevacid for his acid reflux. Lasix to get the extra fluid off. And that's about it.
From a medical standpoint, he is doing very very well. From a mommy standpoint, he is suffering, and I hate it. No parent should have to see their child endure this- multiple times. No parent should be put in the position where they either force their child through this, or he dies. Yes, it is really that cut and dry. Without these surgeries, Wyatt would have died just days after birth.
This time around, I am better about controlling my emotions. I definitely bawled while holding Wyatt just before surgery. But I have been good about keeping my composure, especially in front of Austyn. So that has been good. We will see how I do going forward.
I just hope that Wyatt can find some comfort soon. Then we can move on to weaning his oxygen, and coming back home, where he belongs. We were home for almost 4 months before his Glenn, and I loved it. Two days post op and I am so very ready for our life back, not life in the hospital.
As things progress, you know I'll be here updating.
Until then, be well!
So, Wyatt's head hurts. A lot. More than a lot. And his chest hurts. Because they cut it open, opened up his rib cage, and dug around in there for a few hours before sewing everything back up. His left foot, both wrists, and neck hurt from his IV's. His tummy hurts- were giving him pretty heavy duty pain killers, which causes constipation, and his intestines didn't do much for a day or so during surgery. The poor kid needs a good poop. His right side hurts, from where they cut a slit and inserted a tube for blood drainage. I hear those chest tubes hurt like hell. His throat hurts, from being intubated. His lungs hurt, from being intubated. This makes him cough, which in turn hurts his chest and his throat. So, yeah, it's safe to say he is in a lot of pain.
His doctors and nurses are great about pain management. I saw on the computer today they rated his pain a 7/10. He is receiving Tylenol with a narcotic in it every 4 hours. He also has orders for dilaudid every 2 hours. They also gave him a dose of Ativan today to help calm him down. That's like popping a Xanax. And still, he can't get comfortable.
He has started eating, thankfully. And his labs and numbers look pretty good. They ran a CBC this morning (complete blood count) and that came back a little low so he got FFP (fresh frozen plasma). His O2 sats are good- unless he's crying. It is to be expected that he will drastically de-sat when crying, until his body gets used to its new plumbing. He is on a lot of oxygen. 100% O2 at 2 liters of flow. He may have to come home on oxygen for a few weeks, we don't know yet. His head is about twice it's normal size. His face, eyes, and neck are very swollen. This is expected to go away. But, he isn't requiring much in the way of meds. At two days post Norwood, he was still on 4 or 5 meds to help his heart function. At two days post Glenn, he is on none. They turned his Milrinone off today, and he was only on epinephrine for a short time. This time around he never got dopamine, and they haven't started any Enalapril. He is getting some calcium and potassium to make up for post op deficiencies. He is getting heparin to thin his blood. Colace to help him poo. Obviously the pain meds. Prevacid for his acid reflux. Lasix to get the extra fluid off. And that's about it.
From a medical standpoint, he is doing very very well. From a mommy standpoint, he is suffering, and I hate it. No parent should have to see their child endure this- multiple times. No parent should be put in the position where they either force their child through this, or he dies. Yes, it is really that cut and dry. Without these surgeries, Wyatt would have died just days after birth.
This time around, I am better about controlling my emotions. I definitely bawled while holding Wyatt just before surgery. But I have been good about keeping my composure, especially in front of Austyn. So that has been good. We will see how I do going forward.
I just hope that Wyatt can find some comfort soon. Then we can move on to weaning his oxygen, and coming back home, where he belongs. We were home for almost 4 months before his Glenn, and I loved it. Two days post op and I am so very ready for our life back, not life in the hospital.
As things progress, you know I'll be here updating.
Until then, be well!
Thursday, February 14, 2013
The Glenn
Wyatt had his Glenn on February 13, 2013. Even though we've already handed him over for one open heart surgery, this one was not any easier. As I held him in his pre op room, I silently sobbed and told him he had to stay strong.
Our surgeon made a special request to the anesthesiologist for DJ to go back into the OR with Wyatt while they put him out. Usually, the rule is no parents in the OR until the kid is 1 or older. But because of our surgeon putting in the request for us, anesthesiology approved, so DJ was able to hold Wyatt's hands as they put him out, and then got one last kiss before leaving the OR.
Surgery went rather smoothly. A lot of times, dissecting the scar tissue around the heart that formed after the Norwood takes quite some time, and takes up the vast majority of the surgical time. Wyatt's scar tissue wasn't all that bad, and it didn't take long for them to dissect that tissue. Wyatt went onto bypass well, and they did not cross clamp this time (stop his heart) so he did better with this over all. He came off of bypass well also, and they were able to control bleeding much easier this time. They took Wyatt back at 8 am, and it was about 3:30 or so when we got to lay eyes on him in the PICU.
Thus far, post op has been good, but scary for us. Last night, immediately after surgery, Wyatt's O2 sats were 75%, and he was intubated. As the night wore on, his O2 sats kept dropping, and we couldn't get them to come up. We had him on 100% oxygen on the ventilator, and still he was only sating in the 60's. they took an X ray and an ultrasound and an echo, and found a large pocket of blood between his right lung and right chest wall. That fluid was preventing his lung from expanding all the way, which they suspected was causing the sat problems. So they inserted a chest tube into his right chest, and drained about 4 ounces of blood. He was immediately a whole new baby, with O2 sats in the 70's. They extubated him at 5 this morning (about 14 hours after surgery) and he has been doing well since.
The things that aren't going like I would like to see them (trust and believe I am no doctor- these are just the things that I am currently uncomfortable or unhappy about. Just because I don't like them does not mean they are abnormal or abad from his team's point of view):
*When Wyatt cries, he turns a nasty shade of purple. He has never had this problem until now. They tell us that will subside over time
*When he cries, he de-sats, big time. His last fit ended him up at about 30%O2 (his goal range is 75-90)
*He still has no interest in food. In good time, momma, in good time.
*He is in a lot of pain. Between his chest hurting like hell, so many IV's and that right side chest tube, I would hurt too. He is getting dilaudid every 4 hours, Tylenol every 4 hours, precedex continuously, and fentanyl as needed. Still. when he moves or coughs, he hurts.
I hate seeing him like this and I miss my laughing, smiling baby SO much it hurts. Typing that put me in tears. I wish I could do this all for him. I wish I could be the one that hurts. Tomorrow they are planning to remove some chest tubes and lines, which is going to be hell if he is still like this.
Fingers crossed day #3 goes better for him.
I will update more later on- Wyatt is throwing big fits every 45 minutes or so, which has me completely on edge, so when I am more calm and can provide more details, I will.
Until then, be well!
Our surgeon made a special request to the anesthesiologist for DJ to go back into the OR with Wyatt while they put him out. Usually, the rule is no parents in the OR until the kid is 1 or older. But because of our surgeon putting in the request for us, anesthesiology approved, so DJ was able to hold Wyatt's hands as they put him out, and then got one last kiss before leaving the OR.
Surgery went rather smoothly. A lot of times, dissecting the scar tissue around the heart that formed after the Norwood takes quite some time, and takes up the vast majority of the surgical time. Wyatt's scar tissue wasn't all that bad, and it didn't take long for them to dissect that tissue. Wyatt went onto bypass well, and they did not cross clamp this time (stop his heart) so he did better with this over all. He came off of bypass well also, and they were able to control bleeding much easier this time. They took Wyatt back at 8 am, and it was about 3:30 or so when we got to lay eyes on him in the PICU.
Thus far, post op has been good, but scary for us. Last night, immediately after surgery, Wyatt's O2 sats were 75%, and he was intubated. As the night wore on, his O2 sats kept dropping, and we couldn't get them to come up. We had him on 100% oxygen on the ventilator, and still he was only sating in the 60's. they took an X ray and an ultrasound and an echo, and found a large pocket of blood between his right lung and right chest wall. That fluid was preventing his lung from expanding all the way, which they suspected was causing the sat problems. So they inserted a chest tube into his right chest, and drained about 4 ounces of blood. He was immediately a whole new baby, with O2 sats in the 70's. They extubated him at 5 this morning (about 14 hours after surgery) and he has been doing well since.
The things that aren't going like I would like to see them (trust and believe I am no doctor- these are just the things that I am currently uncomfortable or unhappy about. Just because I don't like them does not mean they are abnormal or abad from his team's point of view):
*When Wyatt cries, he turns a nasty shade of purple. He has never had this problem until now. They tell us that will subside over time
*When he cries, he de-sats, big time. His last fit ended him up at about 30%O2 (his goal range is 75-90)
*He still has no interest in food. In good time, momma, in good time.
*He is in a lot of pain. Between his chest hurting like hell, so many IV's and that right side chest tube, I would hurt too. He is getting dilaudid every 4 hours, Tylenol every 4 hours, precedex continuously, and fentanyl as needed. Still. when he moves or coughs, he hurts.
I hate seeing him like this and I miss my laughing, smiling baby SO much it hurts. Typing that put me in tears. I wish I could do this all for him. I wish I could be the one that hurts. Tomorrow they are planning to remove some chest tubes and lines, which is going to be hell if he is still like this.
Fingers crossed day #3 goes better for him.
I will update more later on- Wyatt is throwing big fits every 45 minutes or so, which has me completely on edge, so when I am more calm and can provide more details, I will.
Until then, be well!
Monday, February 11, 2013
Where is the pause button
Today was Wyatt's pre-operative appointment for his upcoming Glenn. They had to take his vital signs (blood pressure, pulse ox, height weight), do an EKG, take a urine sample, and draw blood. The poor guy's veins are so blown out they had to draw blood from his scalp.
And today is the day that made his upcoming surgery so very real. I swear when I am faced with stress like this, I just shut down. The day of Wyatt's Norwood, I was a zombie. There are many parts of the day I simply don't remember. And there are parts that I feel like I remember clearly, but have been told otherwise. My brain just turns to mush. And it takes every ounce of my being to continue being a functioning adult, and parent. And I am sure that in these times, I am not being quite the parent I should be being.
DJ signed the consent form for Wyatt's Norwood, so he feels like it is good luck for him to sign all of the surgical consent/anesthesiology forms. And even though he has done it before, giving informed consent today brought him to tears. No parent should have to feel like signing that form makes him a bad parent; but not signing the form does also. It's as if you're signing his death warrant by signing it, but you are 100% signing that warrant by not signing the form. You are agreeing to let some people take your baby into an operating room, knock him out, slice him open, and cut pieces of his heart off, in hopes that it all saves his life. Shitty does not even begin to describe this situation.
I just wish that the rest of life would stop while we deal with this. I wish I could pause everything else: Austyn, 1st grade, the bills, the house, the cats, jobs, responsibilities. I wish it would all go away so I could focus on Wyatt and only Wyatt, and not feel guilty for not being able to think of much else. So I could not feel guilty for wanting to curl up in a ball in my bed with a bottle of beer and cry myself to sleep. So I could get away from the images in my head. So I could be able to watch DJ playing with Wyatt, making him laugh, and forcing myself to remember every single piece of that vision - it case it is the last one I get. It is so unfair that heart parents have to think that way.
When I was pregnant, a sweet boy named Logan was HLHS as well, and I was following his journey closely. 2 days before his Glenn, his mom posted a blog about him, and said something about how she wondered if that night would be the last night they got with him (because he was due to be in the hospital the next day, and then surgery the day after). It made me so sad that she had to think that way. And then, early that next morning, Logan was rushed to the ER and he lost his battle. It was in fact the last night they got with him. That thought makes my stomach churn. That is our reality. Or at least it could be.
I don't do religion, and I don't pray, but I do hope that that does not become our reality. I hope with all my might that surgery goes well, that Wyatt recovers quickly, and well, and that we can start living our post-Glenn life.
And in the mean time, if I could just find that damned pause button...
And today is the day that made his upcoming surgery so very real. I swear when I am faced with stress like this, I just shut down. The day of Wyatt's Norwood, I was a zombie. There are many parts of the day I simply don't remember. And there are parts that I feel like I remember clearly, but have been told otherwise. My brain just turns to mush. And it takes every ounce of my being to continue being a functioning adult, and parent. And I am sure that in these times, I am not being quite the parent I should be being.
DJ signed the consent form for Wyatt's Norwood, so he feels like it is good luck for him to sign all of the surgical consent/anesthesiology forms. And even though he has done it before, giving informed consent today brought him to tears. No parent should have to feel like signing that form makes him a bad parent; but not signing the form does also. It's as if you're signing his death warrant by signing it, but you are 100% signing that warrant by not signing the form. You are agreeing to let some people take your baby into an operating room, knock him out, slice him open, and cut pieces of his heart off, in hopes that it all saves his life. Shitty does not even begin to describe this situation.
I just wish that the rest of life would stop while we deal with this. I wish I could pause everything else: Austyn, 1st grade, the bills, the house, the cats, jobs, responsibilities. I wish it would all go away so I could focus on Wyatt and only Wyatt, and not feel guilty for not being able to think of much else. So I could not feel guilty for wanting to curl up in a ball in my bed with a bottle of beer and cry myself to sleep. So I could get away from the images in my head. So I could be able to watch DJ playing with Wyatt, making him laugh, and forcing myself to remember every single piece of that vision - it case it is the last one I get. It is so unfair that heart parents have to think that way.
When I was pregnant, a sweet boy named Logan was HLHS as well, and I was following his journey closely. 2 days before his Glenn, his mom posted a blog about him, and said something about how she wondered if that night would be the last night they got with him (because he was due to be in the hospital the next day, and then surgery the day after). It made me so sad that she had to think that way. And then, early that next morning, Logan was rushed to the ER and he lost his battle. It was in fact the last night they got with him. That thought makes my stomach churn. That is our reality. Or at least it could be.
I don't do religion, and I don't pray, but I do hope that that does not become our reality. I hope with all my might that surgery goes well, that Wyatt recovers quickly, and well, and that we can start living our post-Glenn life.
And in the mean time, if I could just find that damned pause button...
Thursday, February 7, 2013
Let's Get Real
I follow a ton of heart kids on Facebook, and find myself reading way too many sad, sad stories about these sick little kiddos. And almost all of the parents (myself included) always have upbeat things to say like "It's hard but it's worth it" or "I wouldn't change my baby for anything" both of which I find true, to a certain extent. There was a post yesterday where a pregnant mom found out that her baby has HLHS and was wanting to reach out to other parents. A lot of the comments were really upbeat, positive comments, and I am sure that the mom appreciated those - but it got me to thinking - so much of our journey's are sugar coated. Being a heart mom is a life long commitment to a lifestyle you never imagined yourself having. It is, for the record, totally and completely worth it, however, there is so much stuff that either goes unsaid, or is said with some sprinkles and a cherry on top so it doesn't seem so bad.
So, I want to get real about it. Honestly, if I could change Wyatt, I would. I love Wyatt so very much, but I would absolutely love to be able to turn back time to the moment he was created, so I could ensure that all the genes lined up just right, so he wouldn't have HLHS. Would I want to change the way he looks, or his personality? No, of course not. But I would love to make him a heart healthy baby. Surguries, Hospital Stays, pokes, prodds, echos.....they aren't fun, to put it lightly. Having to see your 6 day old son's chest open because he just had open heart surgery and it isn't safe to close his chest is a sight that no parents should ever have to see. And while you're going through that rough patch, waiting with baited breath at your baby's bedside, a lot of your friends and family stop coming around. They realize that this is a hard time for you, but they don't want to face it, so they don't. Being a heart parent leaves you in this world that few will follow you into. Not many people fully understand why you can't get a baby sitter to go out, why you can't meet up for lunch, why you can't have people over. They don't have to live it, so they don't understand it. Hopefully, you'll have at least one person who fully understands what you're going through, and allows for that pressure on your friendship, because they know that more normal times will come. My best friend has been a rock for me through this, and I am not sure what I would do without her. We haven't seen many of our family members, aside from both of our parents, since Wyatt's Norwood, or even before. It's almost as if people think that HLHS is contagious, and they might catch it. So, here you sit, stuck in your house 95% of the time because your baby can't go to the store, or a restaurant, and definitely not to day care. You spend a lot of time cleaning, with soap, and other disinfectants, to try to keep germs away. You find that you haven't found time to shower in the past 3 days. You see your friends on Facebook going about their lives, and realize that that part of your life has come to an end. When I had Austyn, I could leave him overnight with a sitter and go out. Now, that's not an option for us, unless one of us stays home, and the other person goes out. My husband and I have not so much as eaten dinner out together in at least 5 months. Its just not an option for us right now. And I don't care how strong you think your marriage is - it will suffer. The stress of having a CHD baby is more than you'd ever imagine, and it is going to take its toll. It did to us. We are strong, and we are making it, and we are in love, but it takes work. Add that to your 'to-do' list. Then, comes the money problems. I am not sure what other families situations are, but we were two working parents, and I quit my job to stay home with Wyatt full time, thus cutting our income in half. Add in some new expenses - meds, diapers, formula, medical bills, extra gas costs for all the hospital and doctor visits, and you'd be surprised how much money you spend on soap and disinfectants....so now you're broke. Even if you could get a sitter for date night, its most likely not in the budget. We are currently working on filing our bankruptcy, and working on purchasing a second vehicle because both of our cars now are leased and upside down. Then we're double and triple checking that we will be okay going forward - keeping a roof over our heads, food in the fridge, and gas in the car.
So in a nutshell, we are lonely hermit crabs who stay home ALL the time, except for a weekly grocery trip. (I have managed to go out twice since Wyatt was born). We're broke, stressed out, and trying to lead a seemingly normal life for Austyn.
BUT, ideally, after Wyatt has his Glenn, everything will change. He will be SO MUCH more stable, his mortality rate decreases drastically, and he will be able to leave the house. We will still have to be careful to stay away from anyone who is sick, and will avoid places like the McDonalds playplace and Monkey Business, but we will be able to leave. We won't have to check his pulse ox every 3-4 hours, we won't have to fear his upcoming surgery. We will be able to go on a date. I even have plans to go the Rockies home opener with my dad this April. We will still be broke, but a liveable broke. Won't be able to go out and buy a new tv or computer, but our immediate needs will be met. I look forward to spending the summer at home with my boys, and going to the pool (fingers crossed Wyatt likes it!) and the park, and on walks. I look forward to Wyatt touching grass for the first time. Had Wyatt been born heart healthy, I wouldn't have been 'forced' (I did so willingly, ish) to quit my job, and I wouldn't be able to be a full time stay at home mom. I would not get to see my boys grow up as much as I can now. And I am thankful for that.
Have a CHD baby is hard. REALLY HARD. And there are tracks of time where that is the only thing your life is devoted to. But, it gets better. So, even when you get real about it, in the end, I can still say it is totally and completely worth it. Being Wyatt's Mom has shown me a whole new side of myself, and of life.
So, I want to get real about it. Honestly, if I could change Wyatt, I would. I love Wyatt so very much, but I would absolutely love to be able to turn back time to the moment he was created, so I could ensure that all the genes lined up just right, so he wouldn't have HLHS. Would I want to change the way he looks, or his personality? No, of course not. But I would love to make him a heart healthy baby. Surguries, Hospital Stays, pokes, prodds, echos.....they aren't fun, to put it lightly. Having to see your 6 day old son's chest open because he just had open heart surgery and it isn't safe to close his chest is a sight that no parents should ever have to see. And while you're going through that rough patch, waiting with baited breath at your baby's bedside, a lot of your friends and family stop coming around. They realize that this is a hard time for you, but they don't want to face it, so they don't. Being a heart parent leaves you in this world that few will follow you into. Not many people fully understand why you can't get a baby sitter to go out, why you can't meet up for lunch, why you can't have people over. They don't have to live it, so they don't understand it. Hopefully, you'll have at least one person who fully understands what you're going through, and allows for that pressure on your friendship, because they know that more normal times will come. My best friend has been a rock for me through this, and I am not sure what I would do without her. We haven't seen many of our family members, aside from both of our parents, since Wyatt's Norwood, or even before. It's almost as if people think that HLHS is contagious, and they might catch it. So, here you sit, stuck in your house 95% of the time because your baby can't go to the store, or a restaurant, and definitely not to day care. You spend a lot of time cleaning, with soap, and other disinfectants, to try to keep germs away. You find that you haven't found time to shower in the past 3 days. You see your friends on Facebook going about their lives, and realize that that part of your life has come to an end. When I had Austyn, I could leave him overnight with a sitter and go out. Now, that's not an option for us, unless one of us stays home, and the other person goes out. My husband and I have not so much as eaten dinner out together in at least 5 months. Its just not an option for us right now. And I don't care how strong you think your marriage is - it will suffer. The stress of having a CHD baby is more than you'd ever imagine, and it is going to take its toll. It did to us. We are strong, and we are making it, and we are in love, but it takes work. Add that to your 'to-do' list. Then, comes the money problems. I am not sure what other families situations are, but we were two working parents, and I quit my job to stay home with Wyatt full time, thus cutting our income in half. Add in some new expenses - meds, diapers, formula, medical bills, extra gas costs for all the hospital and doctor visits, and you'd be surprised how much money you spend on soap and disinfectants....so now you're broke. Even if you could get a sitter for date night, its most likely not in the budget. We are currently working on filing our bankruptcy, and working on purchasing a second vehicle because both of our cars now are leased and upside down. Then we're double and triple checking that we will be okay going forward - keeping a roof over our heads, food in the fridge, and gas in the car.
So in a nutshell, we are lonely hermit crabs who stay home ALL the time, except for a weekly grocery trip. (I have managed to go out twice since Wyatt was born). We're broke, stressed out, and trying to lead a seemingly normal life for Austyn.
BUT, ideally, after Wyatt has his Glenn, everything will change. He will be SO MUCH more stable, his mortality rate decreases drastically, and he will be able to leave the house. We will still have to be careful to stay away from anyone who is sick, and will avoid places like the McDonalds playplace and Monkey Business, but we will be able to leave. We won't have to check his pulse ox every 3-4 hours, we won't have to fear his upcoming surgery. We will be able to go on a date. I even have plans to go the Rockies home opener with my dad this April. We will still be broke, but a liveable broke. Won't be able to go out and buy a new tv or computer, but our immediate needs will be met. I look forward to spending the summer at home with my boys, and going to the pool (fingers crossed Wyatt likes it!) and the park, and on walks. I look forward to Wyatt touching grass for the first time. Had Wyatt been born heart healthy, I wouldn't have been 'forced' (I did so willingly, ish) to quit my job, and I wouldn't be able to be a full time stay at home mom. I would not get to see my boys grow up as much as I can now. And I am thankful for that.
Have a CHD baby is hard. REALLY HARD. And there are tracks of time where that is the only thing your life is devoted to. But, it gets better. So, even when you get real about it, in the end, I can still say it is totally and completely worth it. Being Wyatt's Mom has shown me a whole new side of myself, and of life.
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