Boy, oh boy. I think I simply forgot about this dang ol' blog. Sorry!
I want to change things up a bit. Since Wyatt has been doing so well, I simply don't have much to talk about with him, medically. And many, MANY things have changed for our family in the past 6 or so months, so I want to come at this from a different perspective.
Rather than just sharing about Wyatt's health, and how his HLHS affects him, and us, I want to simply share our lives, and all the things we face. Because, I only know of a select few families who are both military & heart families. And damnit, we need to support each other!
DJ signed back up with the Army (Reserves) in October, so we are now adding "military family" to our list of family adjectives. There are some HUGE things in the works with that, and I will be able to share those details soon.
The kids are both happy and healthy. YAY! :) I am now doing in-home day care for a little 9 month old kiddo, so I am pretty darned busy.
We are excited for Christmas here in a few days, and are looking forward to the family time to be spent together.
I'll be back soon, to share some more very important details. For now, I've got to go take care of these two little babies! ;)
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, December 19, 2013
Monday, March 25, 2013
It has been WAY too long
Boy- life sure does prevent me from blogging often enough. Sheesh! So...what has happened in the past month?!
Wyatt continues to recover from surgery. He definitely regressed after his Glenn- suffering from things ranging from stranger anxiety to no longer sleeping through the night. A couple of weeks ago, he went through this really "fun" stage where he just stopped sleeping, period. In a 24 hour period he slept less than 7 hours total. You bet your butt I was on the phone with doctors. I took him to his pediatrician, and called the cardiologist as well. The pediatrician could find absolutely nothing wrong, and the cardiologist had no ideas. We had started to wean his Prevacid, and in the end we think he was suffering from silent reflux, where his stomach didn't bother him enough to make him cranky, but it bothered him enough to keep him from sleeping. That was a fun few days- I was only getting like 3 hours sleep a night, and we were getting up at 2:30 am every day. Thankfully, we've gotten past that.
We saw cardiology today and everyone in the office was amazed with Wyatt and how big he's gotten and how good he looks. His echo looked really good, the only negative being that he still may have some narrowing near his aorta. We've seen this narrowing for months, but when he had his cath before his Glenn, they found that the velocity was equal, it was simply a visual narrowing. So at this point we are just keeping an eye on it to make sure it doesn't become a problem. His blood pressure was slightly elevated, so we increased his heart med just a little bit, and we will see cardiology again in 3 months. At 2 days shy of 6 months old, Wyatt weighs 17pounds,10ounces. He is just shy of 27 inches long. A beef cake for a heart baby :-)
We also got a puppy about a week ago, Stewie, a 3 month old miniature dachshund. He has been so much fun for Austyn, and DJ has loved having a dog in the house again. It has been fun for me as well, but also daunting. Potty training a puppy while caring for a 6 month old isn't exactly the easiest thing I've ever done. But, all things considered, I think things are going really well, and Stewie is a great addition to the family.
We also have the ball rolling full steam ahead on our bankruptcy, and we should be finished with the hardest part of that process here soon.
DJ is working on trying to get into a police academy that starts this summer. It is his dream to be a police officer, and he would make more money and have better benefits, so cross your fingers he gets in? It's a long shot- thousands apply and maybe 100 get in. Maybe. But, we can hope!
And, our cardiologists office and surgeons office have been working to put together a support group for Denver area heart parents. I talked with the NP from our practice about this about a month ago, and today I saw a flyer for the group. I've already contacted the people listed on the flyer and offered to help however I can. I am really excited to potentially help other families as they begin their journeys. Plus I think it will be a great outlet for me as well.
Other than those things, life has just been life. Austyn is on spring break, so it'll be nice to have him home this week, and I'm looking forward to a "Mommy's Day out" to go to the home opener Rockies game with my dad in a few weeks.
OH! That's the other thing- I left Wyatt with a babysitter for the FIRST time today. My mom stayed at our house with him, Austyn, and Stewie for about an hour while I ran an errand. I was nervous, just, well, because. He's my heart baby and he's never been with anyone but DJ or I. But, it went really well, and he snuggled up with Grandma and slept and was a good boy while I was gone. She will also watch him while I go to the baseball game, which will be a much longer timeframe. Slowly, but surely, I will widen Wyatt's bubble :)
Wyatt continues to recover from surgery. He definitely regressed after his Glenn- suffering from things ranging from stranger anxiety to no longer sleeping through the night. A couple of weeks ago, he went through this really "fun" stage where he just stopped sleeping, period. In a 24 hour period he slept less than 7 hours total. You bet your butt I was on the phone with doctors. I took him to his pediatrician, and called the cardiologist as well. The pediatrician could find absolutely nothing wrong, and the cardiologist had no ideas. We had started to wean his Prevacid, and in the end we think he was suffering from silent reflux, where his stomach didn't bother him enough to make him cranky, but it bothered him enough to keep him from sleeping. That was a fun few days- I was only getting like 3 hours sleep a night, and we were getting up at 2:30 am every day. Thankfully, we've gotten past that.
We saw cardiology today and everyone in the office was amazed with Wyatt and how big he's gotten and how good he looks. His echo looked really good, the only negative being that he still may have some narrowing near his aorta. We've seen this narrowing for months, but when he had his cath before his Glenn, they found that the velocity was equal, it was simply a visual narrowing. So at this point we are just keeping an eye on it to make sure it doesn't become a problem. His blood pressure was slightly elevated, so we increased his heart med just a little bit, and we will see cardiology again in 3 months. At 2 days shy of 6 months old, Wyatt weighs 17pounds,10ounces. He is just shy of 27 inches long. A beef cake for a heart baby :-)
We also got a puppy about a week ago, Stewie, a 3 month old miniature dachshund. He has been so much fun for Austyn, and DJ has loved having a dog in the house again. It has been fun for me as well, but also daunting. Potty training a puppy while caring for a 6 month old isn't exactly the easiest thing I've ever done. But, all things considered, I think things are going really well, and Stewie is a great addition to the family.
We also have the ball rolling full steam ahead on our bankruptcy, and we should be finished with the hardest part of that process here soon.
DJ is working on trying to get into a police academy that starts this summer. It is his dream to be a police officer, and he would make more money and have better benefits, so cross your fingers he gets in? It's a long shot- thousands apply and maybe 100 get in. Maybe. But, we can hope!
And, our cardiologists office and surgeons office have been working to put together a support group for Denver area heart parents. I talked with the NP from our practice about this about a month ago, and today I saw a flyer for the group. I've already contacted the people listed on the flyer and offered to help however I can. I am really excited to potentially help other families as they begin their journeys. Plus I think it will be a great outlet for me as well.
Other than those things, life has just been life. Austyn is on spring break, so it'll be nice to have him home this week, and I'm looking forward to a "Mommy's Day out" to go to the home opener Rockies game with my dad in a few weeks.
OH! That's the other thing- I left Wyatt with a babysitter for the FIRST time today. My mom stayed at our house with him, Austyn, and Stewie for about an hour while I ran an errand. I was nervous, just, well, because. He's my heart baby and he's never been with anyone but DJ or I. But, it went really well, and he snuggled up with Grandma and slept and was a good boy while I was gone. She will also watch him while I go to the baseball game, which will be a much longer timeframe. Slowly, but surely, I will widen Wyatt's bubble :)
Tuesday, February 26, 2013
Post Glenn life is Exhausting
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!
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!
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.
Wednesday, January 30, 2013
First Heart Cath
Wyatt had his first cath today. We had to stop feeding him formula at 4:00 this morning, then he was allowed pedialyte until 8 am. Waiting in his pre-op room wasn't so bad, and he was actually rather happy given he hadn't eaten in so many hours. I got to carry him from pre op to the cath lab, and then we had to hand him over. We each held him and kissed him about 100 times before handing him to the nurse with tears rolling down our faces. We have given informed consent before, we have handed him over before...it doesn't hurt any less the second time around.
He was in the cath lab for 2.5 hours, and things went really well. They did not find any narrowing that was causing any problems. He does have some small aortic narrowing, however it is visual narrowing not functional narrowing, and the velocity is the same above and below his aorta. He did have 3 collaterals (where the lungs sent out a hormone saying "hey! We're not getting enough oxygen...send us more!" So his body built these 3 new passage ways to get more blood to his lungs) so the doc put in occlusions to stop that blood flow. His body thinks it knows what it wants, but since he wasn't born with normal cardiac anatomy, it is wrong.
We then went to the PACU (post anasthesia care unit) for a little while where they just monitored him. They did let him eat and he ate like a champ! 2 ounces of pedialyte and 5 ounces of formula :) from there they sent us to the pediatric unit to finish out the required 4 hours of monitoring. His O2 sats were dropping real low there for a while, but as he wakes up more and more, they are getting better. The cardiologist is happy with everything and says that as soon as the nurses can get all the paperwork done we can go home :)
We are scheduled for his Glenn on February 13th and so long as he doesn't have any viruses, we are right on target for that. Getting his Glenn completed will get us out of interstage and onto a much more normal, steady life. Post Norwood the fatality rate for HLHSers is some 15% and post Glenn that number drops significantly to single digits. The months between the Norwood and the Glenn are the terrifying ones. Not that any of it isn't terrifying...
Steps 1 and 2 are done....now we just have to deal with great big ol scary step 3 here in a couple of weeks. Wyatt is strong and he is a fighter, and I know he's got this!
He was in the cath lab for 2.5 hours, and things went really well. They did not find any narrowing that was causing any problems. He does have some small aortic narrowing, however it is visual narrowing not functional narrowing, and the velocity is the same above and below his aorta. He did have 3 collaterals (where the lungs sent out a hormone saying "hey! We're not getting enough oxygen...send us more!" So his body built these 3 new passage ways to get more blood to his lungs) so the doc put in occlusions to stop that blood flow. His body thinks it knows what it wants, but since he wasn't born with normal cardiac anatomy, it is wrong.
We then went to the PACU (post anasthesia care unit) for a little while where they just monitored him. They did let him eat and he ate like a champ! 2 ounces of pedialyte and 5 ounces of formula :) from there they sent us to the pediatric unit to finish out the required 4 hours of monitoring. His O2 sats were dropping real low there for a while, but as he wakes up more and more, they are getting better. The cardiologist is happy with everything and says that as soon as the nurses can get all the paperwork done we can go home :)
We are scheduled for his Glenn on February 13th and so long as he doesn't have any viruses, we are right on target for that. Getting his Glenn completed will get us out of interstage and onto a much more normal, steady life. Post Norwood the fatality rate for HLHSers is some 15% and post Glenn that number drops significantly to single digits. The months between the Norwood and the Glenn are the terrifying ones. Not that any of it isn't terrifying...
Steps 1 and 2 are done....now we just have to deal with great big ol scary step 3 here in a couple of weeks. Wyatt is strong and he is a fighter, and I know he's got this!
Sunday, January 13, 2013
I think my plate is a bit full
On January 4th my grandpa arrived in Denver for a visit. We were all very excited for him to come so we could see him and so he could meet Wyatt. When he arrived they ended up taking him straight from the plane to the ER because his oxygen sats were low and he needed oxygen. We assumed that he was just negatively affected by the altitude, and he had caught bacterial bronchitis previously so we figured that didn't help either. I was able to pick him up from the ER that night, and we had some oxygen delivered to the house for him. As the days went on, he seemed to be getting worse, and we started to fear that he had a virus or bacteria which could be spread to Wyatt, and our concern for Grandpa was growing. So on the 6th we sent him back to the ER, and he has been in the hospital ever since, so for the past week.
I am the only family member he has here, aside from DJ, Austyn, and Wyatt. His piece of work of a daughter can't be tracked down, so she's useless. So, I go to the hospital every day when I can. I can't take Wyatt with me, for fear of germ exposure, especially with all the flu cases out there. So I can't go during the day while Austyn is at school, and have to wait for DJ to get home from work before I can go. Which means I have to have dinner on the table the moment DJ gets home, so we can eat something since I don't usually get back until 7 or so. Then Austyn has to do homework, take a bath, read, and get ready for bed. I thought the weekend was going to be easier, but I had to pick our car up from the shop yesterday, and pick up Wyatt's meds from the pharmacy, and DJ invited his dad over for the Bronco game, so I had to be here for that. Today, I had to get groceries, and DJ is helping a friend move, so I won't be able to get down to the hospital until 6 or so. Then I've got to figure out some dinner. And tomorrow is Monday and it starts all over.
Thankfully, my aunt is a big help from afar and has been dealing with changing Grandpas flights, and she calls him daily and talks with him for a while. This past week was especially convoluted because of Wyatt's cardiology appointment, and scheduling both his cath and his Glenn. This coming week I have to take Wyatt to get his Synagis shot, and Grandpa is currently scheduled to fly out a week from today. We still have no idea when he will be discharged, but he will need some time to recover at home before we can stick him on a plane.
I am feeling so torn in so many directions. I am trying to mentally deal with Wyatt's upcoming cath and surgery, which dealing with figuring out his Medicaid and all of the medical bills that continuously come in. Austyn has a musical performance coming up at school that I have to make him a fox costume for, and I have not even begun that process. I am trying to be present at home for the boys, and be as present as possible for Grandpa since I'm the only person he's got. Plus I still have to keep the house in some sort of order. This mama is so ready for a break! My best friends family has come down with the flu, so we can't even go out for some girls time, at least not for a while.
Hopefully things will start to calm down soon. On a brighter note, Wyatt is doing tremendously well. He is over 13 pounds now, and is happy and smiling most of the time :)
I am the only family member he has here, aside from DJ, Austyn, and Wyatt. His piece of work of a daughter can't be tracked down, so she's useless. So, I go to the hospital every day when I can. I can't take Wyatt with me, for fear of germ exposure, especially with all the flu cases out there. So I can't go during the day while Austyn is at school, and have to wait for DJ to get home from work before I can go. Which means I have to have dinner on the table the moment DJ gets home, so we can eat something since I don't usually get back until 7 or so. Then Austyn has to do homework, take a bath, read, and get ready for bed. I thought the weekend was going to be easier, but I had to pick our car up from the shop yesterday, and pick up Wyatt's meds from the pharmacy, and DJ invited his dad over for the Bronco game, so I had to be here for that. Today, I had to get groceries, and DJ is helping a friend move, so I won't be able to get down to the hospital until 6 or so. Then I've got to figure out some dinner. And tomorrow is Monday and it starts all over.
Thankfully, my aunt is a big help from afar and has been dealing with changing Grandpas flights, and she calls him daily and talks with him for a while. This past week was especially convoluted because of Wyatt's cardiology appointment, and scheduling both his cath and his Glenn. This coming week I have to take Wyatt to get his Synagis shot, and Grandpa is currently scheduled to fly out a week from today. We still have no idea when he will be discharged, but he will need some time to recover at home before we can stick him on a plane.
I am feeling so torn in so many directions. I am trying to mentally deal with Wyatt's upcoming cath and surgery, which dealing with figuring out his Medicaid and all of the medical bills that continuously come in. Austyn has a musical performance coming up at school that I have to make him a fox costume for, and I have not even begun that process. I am trying to be present at home for the boys, and be as present as possible for Grandpa since I'm the only person he's got. Plus I still have to keep the house in some sort of order. This mama is so ready for a break! My best friends family has come down with the flu, so we can't even go out for some girls time, at least not for a while.
Hopefully things will start to calm down soon. On a brighter note, Wyatt is doing tremendously well. He is over 13 pounds now, and is happy and smiling most of the time :)
Wednesday, January 9, 2013
3 Month Cardiology Appointment
I just took Wyatt in for his cardiology appointment. These appointments always freak me out. I get so comfortable with our home life and the way things are going, that when a cardio appointment comes up, I become terrified that we are going to go in, and the echo is going to show that something is wrong. I am sure that this fear is one that every heart mom feels. It is so easy to forget that Wyatt is sick when we're at home living our day to day lives, and that bubble could so easily be popped.
Anyway, his cardiologist said that Wyatt's heart function still looks great. He has some increased velocity in his aorta and his shunt, and his O2 sats are starting to drop. All three of these things are not necessarily good, but are expected. The Norwood was not meant to be a procedure that would carry Wyatt very far. It is a procedure that buys Wyatt some time to grow and get bigger and stronger so he can have another surgery. The fact that the velocity is rising, and O2 sats are dropping simply means that the Norwood did it's job, and the time for the Glenn is approaching. We upped Wyatt's Enalapril, as his blood pressure was a bit elevated. (Side note to all you new heart parents: WATCH EVERY DETAIL CLOSELY AND ADVOCATE FOR YOUR CHILD! The cardiologist re-wrote Wyatt's prescription for Enalapril with the assumption that Wyatt was currently taking 2.5 mg/mL - meaning they formulated the medicine to have 2.5 mg of Enalapril in every 1 mL of liquid. (this is the standard concentration) Because babies can't just pop a pill and their medications have to be compounded, those medications can be made however the doc would like. Wyatt's new prescription was written for 1.2 mL PO BID (by mouth, twice a day) of the 2.5mg/mL concentration, meaning he would be taking 6 mg's per day. His current concentration is only 1mg/mL, so he is only taking 2 mg's per day. Had I not caught this, Wyatt would have been taking triple his normal dose, which may have lowered his blood pressure too much.) We also scheduled Wyatt's catheterization for January 30th, and are expecting the Glenn about 2 weeks after that. The cardiologist did say that Wyatt is growing tremendously, and that he "wishes all his hypoplasts grew like that". :)
So, 3 weeks from today, we will be back in the hospital. Wyatt will have his cath, and we are expecting an overnight stay afterwards for observation - as that seems to be pretty typical with HLHSers and their caths. Then, right around Valentines Day, we are expecting the Glenn (I never liked that holiday anyway). Ugh. This momma is not ready to hand her baby back over. Don't get me wrong, I love our team, and I trust them. I love that our communication with them is so open, and that I can call and ask questions any time, and that they will always listen to me. I trust Wyatt's surgeon completely. That does not mean I am ready for my baby to go back under, go back on bypass, be opened back up, have another heart surgery, be re-intubated. I am not ready for any of that. No amount of time will make me ready, however, and I know that.
I just have to keep telling myself that it's a step in the right direction. I wish with all of my being that Wyatt just had to have the Norwood, and the nightmare was over. I wish that we could look back on it, recognize that it was complete hell, and be able to move on. Unfortunately, that isn't how HLHS works, not even a little bit. And I imagine that after Wyatt has his Glenn, we are going to get REALLY comfortable with life, since we won't be expecting another surgery until his Fontan, around 2-3 years old.
When we were first diagnosed back in May, I had a hard time imagining Wyatt growing up, playing, laughing, etc. It was hard for me to get past his heart defect and imagine any sort of normal life. Now that we are living it, I can't wait to watch Wyatt learn to laugh, sit up, crawl, play, walk, run, etc. I imagine all of those things for him because life is no longer abnormal. This is our new normal. And while parts of this new normal are really difficult and painful, it is ours, and it provides us two smiling, wonderful boys, so I love it.
For the next 3 weeks, I will be cherishing each and every moment we are home (moreso than I already do). Because I know first hand the hell that is coming, and even though I've already lived through it, I don't think I remember the pain. They say that women forget the pain of childbirth so they will do it again - I like to think this is a similar situation. I can't re-create the pain of Wyatt's Norwood in my brain. I can clearly imagine the pain a paper cut causes, or stubbing my toe, or having my heart broken. I can't re-create that pain, it is just way too strong.
Oh! Also! We have been waking Wyatt throughout the night to eat, about every 3 hours, as instructed. And Wyatt's cardiologist told me today that we no longer have to do that! Wyatt is big enough, and his weight gain is steady enough, that allowing him to sleep through the night (if he chooses - we will see how this goes) is ok! Of course, I will continue to monitor his weight, and if his gain is negatively affected, we will adjust as needed, but still...this momma and daddy just might be able to start getting entire nights of sleep! Yahooo!
Anyway, his cardiologist said that Wyatt's heart function still looks great. He has some increased velocity in his aorta and his shunt, and his O2 sats are starting to drop. All three of these things are not necessarily good, but are expected. The Norwood was not meant to be a procedure that would carry Wyatt very far. It is a procedure that buys Wyatt some time to grow and get bigger and stronger so he can have another surgery. The fact that the velocity is rising, and O2 sats are dropping simply means that the Norwood did it's job, and the time for the Glenn is approaching. We upped Wyatt's Enalapril, as his blood pressure was a bit elevated. (Side note to all you new heart parents: WATCH EVERY DETAIL CLOSELY AND ADVOCATE FOR YOUR CHILD! The cardiologist re-wrote Wyatt's prescription for Enalapril with the assumption that Wyatt was currently taking 2.5 mg/mL - meaning they formulated the medicine to have 2.5 mg of Enalapril in every 1 mL of liquid. (this is the standard concentration) Because babies can't just pop a pill and their medications have to be compounded, those medications can be made however the doc would like. Wyatt's new prescription was written for 1.2 mL PO BID (by mouth, twice a day) of the 2.5mg/mL concentration, meaning he would be taking 6 mg's per day. His current concentration is only 1mg/mL, so he is only taking 2 mg's per day. Had I not caught this, Wyatt would have been taking triple his normal dose, which may have lowered his blood pressure too much.) We also scheduled Wyatt's catheterization for January 30th, and are expecting the Glenn about 2 weeks after that. The cardiologist did say that Wyatt is growing tremendously, and that he "wishes all his hypoplasts grew like that". :)
So, 3 weeks from today, we will be back in the hospital. Wyatt will have his cath, and we are expecting an overnight stay afterwards for observation - as that seems to be pretty typical with HLHSers and their caths. Then, right around Valentines Day, we are expecting the Glenn (I never liked that holiday anyway). Ugh. This momma is not ready to hand her baby back over. Don't get me wrong, I love our team, and I trust them. I love that our communication with them is so open, and that I can call and ask questions any time, and that they will always listen to me. I trust Wyatt's surgeon completely. That does not mean I am ready for my baby to go back under, go back on bypass, be opened back up, have another heart surgery, be re-intubated. I am not ready for any of that. No amount of time will make me ready, however, and I know that.
I just have to keep telling myself that it's a step in the right direction. I wish with all of my being that Wyatt just had to have the Norwood, and the nightmare was over. I wish that we could look back on it, recognize that it was complete hell, and be able to move on. Unfortunately, that isn't how HLHS works, not even a little bit. And I imagine that after Wyatt has his Glenn, we are going to get REALLY comfortable with life, since we won't be expecting another surgery until his Fontan, around 2-3 years old.
When we were first diagnosed back in May, I had a hard time imagining Wyatt growing up, playing, laughing, etc. It was hard for me to get past his heart defect and imagine any sort of normal life. Now that we are living it, I can't wait to watch Wyatt learn to laugh, sit up, crawl, play, walk, run, etc. I imagine all of those things for him because life is no longer abnormal. This is our new normal. And while parts of this new normal are really difficult and painful, it is ours, and it provides us two smiling, wonderful boys, so I love it.
For the next 3 weeks, I will be cherishing each and every moment we are home (moreso than I already do). Because I know first hand the hell that is coming, and even though I've already lived through it, I don't think I remember the pain. They say that women forget the pain of childbirth so they will do it again - I like to think this is a similar situation. I can't re-create the pain of Wyatt's Norwood in my brain. I can clearly imagine the pain a paper cut causes, or stubbing my toe, or having my heart broken. I can't re-create that pain, it is just way too strong.
Monday, December 31, 2012
Adios, 2012!
It is officially the last day of the year, and we've got about 12 hours left until that ball drops. 2012 was not what I thought it was going to be, to say the least. We found out we were pregnant on January 26, 2012, and so looked forward to all the changes we were facing. We looked forward to tiny hands and tiny toes, diapers, mid night feedings, and doting over a sweet, and perfect little angel. Then on May 22, 2012, our world was shattered when we learned that our baby had Hypoplastic Left Heart Syndrome, a complex congenital heart defect affecting only 1 in 5,000. Then on September 27, 2012, we were blessed with the arrival of 7 pound, 10 ounce Wyatt Alexander Sauers. He was beautiful, and crying, and so were we. And we knew right that moment that HLHS or not, he was perfect. October 3, 2012 we endured the most painful day of our lives- handing our 6 day old son over for a major open heart surgery. October 24, 2012, we finally got to bring our baby home from the hospital. And aside from a one night PICU stay on December 16, 2012, home is where we remain.
We anticipated 2012 to be full of joys, and while it was, it was also full of the most painful moments of our lives. But, there isn't a damn thing I would change about 2012. Without that pregnancy, that diagnosis, the path we followed, we wouldn't have Wyatt. We wouldn't be watching Wyatt grow and learn, and we wouldn't be watching Austyn bond with his baby brother like he is. We wouldnt get to witness the wonder on Wyatts face while he watches Austyn. This entire journey has shown me that I am far stronger than I ever thought I was. It has taught me to be thankful every single day for my kids. To smile every day, at every chance. That even when things get tough- there is always something to smile about. That the odds are sometimes stacked against us, but we can do this! I am thankful for 2012, despite the pain and tears that came with it.
And so we move on to 2013. Wyatt will have his second open heart surgery in 2013, but hopefully, we will be able to get through that successfully, come back home, and lead a fairly normal life for a couple of years until Wyatt has his Fontan. Hopefully 2013 will bring us more joys, more smiles, more love.
Normally, on New Years Eve, I tell the current year to kick rocks, and hope for a better new year. But this year, I kindly say goodbye to 2012, with a smile and a wave, and welcome 2013 with open arms, in hopes that even though it too will bring tears, that it will bring even more happiness.
We anticipated 2012 to be full of joys, and while it was, it was also full of the most painful moments of our lives. But, there isn't a damn thing I would change about 2012. Without that pregnancy, that diagnosis, the path we followed, we wouldn't have Wyatt. We wouldn't be watching Wyatt grow and learn, and we wouldn't be watching Austyn bond with his baby brother like he is. We wouldnt get to witness the wonder on Wyatts face while he watches Austyn. This entire journey has shown me that I am far stronger than I ever thought I was. It has taught me to be thankful every single day for my kids. To smile every day, at every chance. That even when things get tough- there is always something to smile about. That the odds are sometimes stacked against us, but we can do this! I am thankful for 2012, despite the pain and tears that came with it.
And so we move on to 2013. Wyatt will have his second open heart surgery in 2013, but hopefully, we will be able to get through that successfully, come back home, and lead a fairly normal life for a couple of years until Wyatt has his Fontan. Hopefully 2013 will bring us more joys, more smiles, more love.
Normally, on New Years Eve, I tell the current year to kick rocks, and hope for a better new year. But this year, I kindly say goodbye to 2012, with a smile and a wave, and welcome 2013 with open arms, in hopes that even though it too will bring tears, that it will bring even more happiness.
Monday, December 24, 2012
Wyatt's First Christmas
Merry Christmas! We celebrated Christmas as a family of four last night and my dad joined us. We had a wonderful time, and are looking forward to more Christmas festivities with DJ's family tomorrow morning.
More than anything, I am so thankful that Wyatt is stable, and we are able to be home together for Christmas. We were originally just hoping to be home by Christmas, after his Norwood. We are so blessed to be home and happy, rather than being in the hospital, or worse, being in the hospital waiting for a heart. I follow so many heart kids, and see that so many of them are still hospitalized. I am definitely counting my blessings this holiday season. Sure, things could be better for us in many aspects, but my boys are happy, Austyn is healthy, and Wyatt is stable- I can't ask for much more!
I hope you all have a wonderful Christmas, and a very happy New Year! Hopefully good things are in store for 2013!
More than anything, I am so thankful that Wyatt is stable, and we are able to be home together for Christmas. We were originally just hoping to be home by Christmas, after his Norwood. We are so blessed to be home and happy, rather than being in the hospital, or worse, being in the hospital waiting for a heart. I follow so many heart kids, and see that so many of them are still hospitalized. I am definitely counting my blessings this holiday season. Sure, things could be better for us in many aspects, but my boys are happy, Austyn is healthy, and Wyatt is stable- I can't ask for much more!
I hope you all have a wonderful Christmas, and a very happy New Year! Hopefully good things are in store for 2013!
Sunday, December 16, 2012
Better safe than sorry
From about 3 am to 9 am, Wyatt was just not himself. Any time he was awake, he was crying. That is very abnormal for him. Nothing made it better, not walking him, or bouncing him, or his bottle or pacifier. So I called the PICU and talked to the intensivist. He said that we should have Wyatt seen in the ER, just to be safe. When we got to the ER, Wyatt's O2 sats were really low, usually around 65%, but even dropping down to the 50's. His cardiologist came and saw him, and decided to admit him to the PICU, just to keep an eye on him for a while. They did a chest x ray, which came back normal, and an echo, which showed good heart function, and no narrowing. So, we aren't really sure what was causing him to de-sat. His sats are better now, and when he does drop, he comes back up quickly.
When we took his onsie off for his echo, we noticed that the base of his scar had a scab on it. This spot has always looked a little worse than the rest of his scar, but the scab was new. Then, the scab fell off and left a small hole in its place. I noticed what looks like a piece of wire sticking through this hole. Originally, they were saying that Wyatt would probably go home tomorrow but now that his surgeon has to look at this spot tomorrow, and may trim the wire, we could potentially be here longer :-/
I am glad that I listened to my gut and we brought him in, but being back in the hospital isn't much fun. Plus, Wyatt sleeps in the bed with us at home because he just won't stay asleep in his bassinett, so we are going to have to spend the night holding him in the rocking chair in shifts, so he will sleep. Should make for an interesting night.
Oh, the joys of being a heart parent. *sigh* good thing he is totally and completely worth it. :)
When we took his onsie off for his echo, we noticed that the base of his scar had a scab on it. This spot has always looked a little worse than the rest of his scar, but the scab was new. Then, the scab fell off and left a small hole in its place. I noticed what looks like a piece of wire sticking through this hole. Originally, they were saying that Wyatt would probably go home tomorrow but now that his surgeon has to look at this spot tomorrow, and may trim the wire, we could potentially be here longer :-/
I am glad that I listened to my gut and we brought him in, but being back in the hospital isn't much fun. Plus, Wyatt sleeps in the bed with us at home because he just won't stay asleep in his bassinett, so we are going to have to spend the night holding him in the rocking chair in shifts, so he will sleep. Should make for an interesting night.
Oh, the joys of being a heart parent. *sigh* good thing he is totally and completely worth it. :)
Wednesday, December 12, 2012
Trying to figure it all out
Well, I guess I can say that things are in the works. Wyatt's SSI application is still pending. I anticipate that he is going to be denied from a monetary stand point. They are basing their decision off of our income from October, which is when I received my short term disability checks, so it looks like we make a lot more than we do since I now have no income. So we will have to go through the appeals process. We also send in applications for Medicaid, and the Medicaid buy in program. I don't believe we are going to qualify for regular Medicaid, and we are going to have to do the buy in program, meaning we will have to pay a monthly fee to have Wyatt carry Medicaid as a secondary insurance. We have been lucky that people are so giving and helpful, and have been getting formula samples which have been a tremendous help in cutting costs. Our neighbor also pointed me towards a place to get diapers for Wyatt, and we should start receiving those the day after Christmas. Again, a huge help in cutting costs. Now we just have to wait and see of the government is going to do anything to help us, or if we're on our own.
Things at home are going pretty well. Wyatt is doing well, and is very smiley and talkative. Austyn is doing well and is very excited for Christmas. DJ and I are looking forward to Christmas with both boys, and trying to figure out life with two boys at home, and how to balance all of life's changes- my not working, financial burdens, schedule changes, medical needs, etc.
Having a heart baby has been so very different than I could have anticipated. There have been parts that have been easier than I thought they would be, an parts that have been much longer difficult. Wyatt's second surgery is constantly looming over my head at this point. I am terrified, to say the least. I don't want to see my baby like that again, I don't want him to have to endure this all over again. But, I know that if all goes well, once we get through the Glenn, we will be able to live a more normal life for a while, until Wyatt's Fontan. We will be able to leave the house with Wyatt. Well be able to do things as a family outside of the home. An hopefully, my constant fear will subside a bit.
Things at home are going pretty well. Wyatt is doing well, and is very smiley and talkative. Austyn is doing well and is very excited for Christmas. DJ and I are looking forward to Christmas with both boys, and trying to figure out life with two boys at home, and how to balance all of life's changes- my not working, financial burdens, schedule changes, medical needs, etc.
Having a heart baby has been so very different than I could have anticipated. There have been parts that have been easier than I thought they would be, an parts that have been much longer difficult. Wyatt's second surgery is constantly looming over my head at this point. I am terrified, to say the least. I don't want to see my baby like that again, I don't want him to have to endure this all over again. But, I know that if all goes well, once we get through the Glenn, we will be able to live a more normal life for a while, until Wyatt's Fontan. We will be able to leave the house with Wyatt. Well be able to do things as a family outside of the home. An hopefully, my constant fear will subside a bit.
Tuesday, December 4, 2012
Fearing the Glenn
We made it through Wyatts birth, his 6 day NICU stay, his Norwood, and his 21 day PICU stay. It was terrifying, heartbreaking, difficult, and at times just plain awful, but we made it. We came home, we adjusted to life as a family of 4. I got used to being a stay at home mom, to taking care of not only a 6 year old, but an infant with special needs as well. While we were in the hospital, it all seemed so normal. And now that we're home, and have been for a while, being home seems normal and the thought of being in the hospital seems very foreign.
And now, I am faced with the reality that Wyatt's Glenn procedure (and heart cath) are just around the corner. The reality that I am going to have to take my baby back to the hospital, give informed consent all over again, wait through the surgery, see him afterwards, see him hurt, see his tubes, know that he is uncomfortable and that there is nothing I can do to make it better. When he had his Norwood, beyond the situation just being scary, it was twice as scary to me because my baby was only 6 days old. He was so tiny and so fragile, and so perfect. And now, in thinking about the Glenn, it's not only scary, but twice as scary because now I fully know my baby, and he knows me. Now, he knows the sounds of our voices, and what we look like. He smiles and coo's at us. He sleeps in my arms, he spits up on my shoulder. We have now created that bond that a parent has with their baby. And I think because of this bond, because he will be 4 months old at the time, because he will be doing this all over again, I am petrified.
I know that the Glenn gets us out of a really scary stage in Wyatt's progression. That it is imperative he have this operation. But damned if I want to go through this all again, and moreso, damned if i want to see my baby go through it all again.
Wyatt is doing so well at home, and at each doctors appointment, it is really easy to forget that this journey is far from over. Even with his scars, and the extra reminder each time I see my own chest, it's easy to forget. When I see pictures of other babies, I immediately look for their scar, as if every baby is supposed to have one. It's just normal to me now, and I don't even notice it a lot of the time. It's too easy to forget that in 2 months time, we will be back at P/SL, back in the PICU, back into dealing with all the hurdles Wyatt has to overcome after another open heart surgery. It's easy to forget that HLHS is a bastard.
As the time gets nearer, my fear gets larger. Every time I think about it, I am that much closer to instantly breaking down into tears. With Christmas right around the corner I am trying to focus on my guys, and make sure that we have an amazing Christmas, and make sure that I am thankful that we are home, together, for Wyatt's first Christmas.
But it's getting harder not to dwell on the fact that this will never be over. That Wyatt will never be "normal", he'll never have a healthy heart like he was supposed to. I love that little guy so much it hurts, and I am thankful that we've come this far, and that he's doing so well, and that he is such a fighter for the long road ahead.
And just for a smile, here is a picture from today of the little stinker. I think this is what he thinks about HLHS ;-)
And now, I am faced with the reality that Wyatt's Glenn procedure (and heart cath) are just around the corner. The reality that I am going to have to take my baby back to the hospital, give informed consent all over again, wait through the surgery, see him afterwards, see him hurt, see his tubes, know that he is uncomfortable and that there is nothing I can do to make it better. When he had his Norwood, beyond the situation just being scary, it was twice as scary to me because my baby was only 6 days old. He was so tiny and so fragile, and so perfect. And now, in thinking about the Glenn, it's not only scary, but twice as scary because now I fully know my baby, and he knows me. Now, he knows the sounds of our voices, and what we look like. He smiles and coo's at us. He sleeps in my arms, he spits up on my shoulder. We have now created that bond that a parent has with their baby. And I think because of this bond, because he will be 4 months old at the time, because he will be doing this all over again, I am petrified.
I know that the Glenn gets us out of a really scary stage in Wyatt's progression. That it is imperative he have this operation. But damned if I want to go through this all again, and moreso, damned if i want to see my baby go through it all again.
Wyatt is doing so well at home, and at each doctors appointment, it is really easy to forget that this journey is far from over. Even with his scars, and the extra reminder each time I see my own chest, it's easy to forget. When I see pictures of other babies, I immediately look for their scar, as if every baby is supposed to have one. It's just normal to me now, and I don't even notice it a lot of the time. It's too easy to forget that in 2 months time, we will be back at P/SL, back in the PICU, back into dealing with all the hurdles Wyatt has to overcome after another open heart surgery. It's easy to forget that HLHS is a bastard.
As the time gets nearer, my fear gets larger. Every time I think about it, I am that much closer to instantly breaking down into tears. With Christmas right around the corner I am trying to focus on my guys, and make sure that we have an amazing Christmas, and make sure that I am thankful that we are home, together, for Wyatt's first Christmas.
But it's getting harder not to dwell on the fact that this will never be over. That Wyatt will never be "normal", he'll never have a healthy heart like he was supposed to. I love that little guy so much it hurts, and I am thankful that we've come this far, and that he's doing so well, and that he is such a fighter for the long road ahead.
And just for a smile, here is a picture from today of the little stinker. I think this is what he thinks about HLHS ;-)
Friday, November 30, 2012
Holy financial problems
Well, my stress about affording HLHS has kicked in for sure. I just don't know what we are going to do. At this point, we have about $16k due out of pocket. Rough estimate, that $16k is due to about 15 different companies. That's 15 monthly payments. I have set up two payment plans thus far, and those two payments alone are $260 a month combined. There is no way we can pay 15 of those. I would say we are spending about $250 a month on current medical costs. That's for meds, co-pays, etc. So even if I only paid $50 a month towards these medical bills, that puts us at $1000 a month on medical costs. Let's also throw in there that I am no longer working, so our income has literally been cut in half. We were living within our means before, but didn't have much money left over, and do have debts of our own. So, in theory, our bills have gone up $1,000 a month(with the $50 payments idea) and our income has been cut in half. We have the money Wyatt received in donations, and use it to help cover his current medical costs, but it is no where near the amount owed in bills. I am not sure of it makes more sense to pay off any bills we can with it, or use it to make payments to keep things afloat longer.
Ultimately, we know that a bankruptcy is in our future. We just don't make the kind of money we need to pay these bills. But, without Medicaid, it's only going to get worse. We're facing another $10k in medical bills here in just a couple of months. I have NO idea how we will swing monthly payments once that has all kicked in too. Not to mention it costs quite a bit of money to hire a bankruptcy attorney, which we would also have to be saving up for, somehow.
Financially, this entire situation is a nightmare. I am the kind of person that always pays her bills, on time, no matter what. I've never been in a situation where I can't afford life. I am so grateful for the help we have received and are still receiving, but still don't know what the hell we are going to do.
Of course, Wyatt's life is worth all the money in the world to us, and in the end, that is what important. Unfortunately, these companies will not accept my love for Wyatt as payment.
Ultimately, we know that a bankruptcy is in our future. We just don't make the kind of money we need to pay these bills. But, without Medicaid, it's only going to get worse. We're facing another $10k in medical bills here in just a couple of months. I have NO idea how we will swing monthly payments once that has all kicked in too. Not to mention it costs quite a bit of money to hire a bankruptcy attorney, which we would also have to be saving up for, somehow.
Financially, this entire situation is a nightmare. I am the kind of person that always pays her bills, on time, no matter what. I've never been in a situation where I can't afford life. I am so grateful for the help we have received and are still receiving, but still don't know what the hell we are going to do.
Of course, Wyatt's life is worth all the money in the world to us, and in the end, that is what important. Unfortunately, these companies will not accept my love for Wyatt as payment.
Thursday, November 29, 2012
Supporting Wyatt
Wednesday, November 28, 2012
Cardiology follow up- 2 months old
Yesterday I took Wyatt to his cardiologist for his first echo since he was discharged from the hospital. I was very nervous, to say the least. Thankfully, his heart still looks good. He has a small amount of narrowing in his aortic arch, but it isn't a concern at this point, and they're just going to watch it. His blood pressure is a little elevated, but he is on a decent dose of Enalapril, and they are just going to keep an eye on that as well. His cardiologist was super happy with Wyatt's weight gain (9.5 pounds now!) and said it made his day to see Wyatt doing so well. :) we go back for another echo on December 19th, and at that time we will schedule Wyatt's heart cath. That, we expect, will be an overnight stay in the hospital. And we are anticipating his Glenn in late January to mid February. The Glenn is a huge step in the right direction, but I am so scared to go back down the surgery road. To sign my baby over again. I am not looking forward to it. At all.
We are still trying to deal with all the incoming medical bills, making payment arrangements as we can, while keeping our other bills paid and providing some sort of Christmas for the boys. We are keeping Christmas small this year, as we need money for other things. I am glad we will all be together at home for Christmas, though. That's the greatest gift of all.
I've also been dealing with some very difficult things in my personal life here lately. Things I never imagined having to deal with, especially while trying to get through all of Wyatt's medical needs. It has been extremely painful and confusing, and I've just been trying my best to get everything sorted out, for the boys sake, and for mine. So those of you who are thinking good thoughts and praying for us, please pray I find the guidance I need, as well as the strength, to get through this unexpected nightmare.
Day to day life for Wyatt is going well. He's a pretty happy guy, smiling daily. He even took a bath this morning without screaming! Must have been my mommy touch! ;) I'm pretty well adjusted to life as a stay at home mom now, and enjoy it for the most part. It's a bummer that we never get to leave the house, aside from doctors appointments, but it's what we've got to do to protect Wyatt and help keep him healthy. Austyn is doing well, and seems to have adjusted to Wyatt being home. I hate that he will have to endure another surgery and hospital stay with us, but again, it's what we have to do. I'm thankful that he's a sweet, loving boy, and that he's so strong. DJ is back to work and back into the swing of things.
A huge thanks to all of you, for following Wyatt's story and supporting him! I am happy that I haven't had much to report here lately- no news is good news!
We are still trying to deal with all the incoming medical bills, making payment arrangements as we can, while keeping our other bills paid and providing some sort of Christmas for the boys. We are keeping Christmas small this year, as we need money for other things. I am glad we will all be together at home for Christmas, though. That's the greatest gift of all.
I've also been dealing with some very difficult things in my personal life here lately. Things I never imagined having to deal with, especially while trying to get through all of Wyatt's medical needs. It has been extremely painful and confusing, and I've just been trying my best to get everything sorted out, for the boys sake, and for mine. So those of you who are thinking good thoughts and praying for us, please pray I find the guidance I need, as well as the strength, to get through this unexpected nightmare.
Day to day life for Wyatt is going well. He's a pretty happy guy, smiling daily. He even took a bath this morning without screaming! Must have been my mommy touch! ;) I'm pretty well adjusted to life as a stay at home mom now, and enjoy it for the most part. It's a bummer that we never get to leave the house, aside from doctors appointments, but it's what we've got to do to protect Wyatt and help keep him healthy. Austyn is doing well, and seems to have adjusted to Wyatt being home. I hate that he will have to endure another surgery and hospital stay with us, but again, it's what we have to do. I'm thankful that he's a sweet, loving boy, and that he's so strong. DJ is back to work and back into the swing of things.
A huge thanks to all of you, for following Wyatt's story and supporting him! I am happy that I haven't had much to report here lately- no news is good news!
Tuesday, November 13, 2012
A whole lotta catching up to do
First of all, I am SO sorry it has taken me this long to update the blog!
We have been home for 20 days now. It has been wonderful being in our own home, sleeping in our own bed, being with Austyn every night, and being together every night. DJ has returned to work and is back into things full swing. I am adjusting to life as a stay at home mom, but things are going well. I can't complain about wearing pajamas all day long :) Ha! I would get dressed, but we don't leave the house ever. I promise, I put real people clothes on for doctor's appointments and things ;)
We are battling the acid reflux on a day to day basis. Some days are good; some are not. Yesterday wasn't too great, but today has been good thus far. Knock on wood. The Prevacid does seem to be doing its job, thankfully, and I think we just need to be super careful about making sure we try to burp Wyatt after every 30-40 mL's, so we don't shock his poor tummy. The Similac Sensitive for spit up seems to be doing the trick as far as formula goes. I am now taking Reglan ::runs off to take the dose I should have taken 2 hours ago:: to see if it will boost my sub-par milk supply. Trying to pump every 3 hours when you are taking care of a baby with acid reflux and you are sleep deprived is not an ideal situation, so I could definitely be pumping more frequently, but the logistics just don't work out. But, Wyatt is still getting breastmilk and all those antibodies, so that's good. He is continuing to gain weight well, weighing 8 pounds, 10 ounces this morning. I am SO thankful we are doing well enough eating by mouth and he didn't have to come home with an NG tube or a G tube.
He has to take Synagis through flu season, so his body could fight off RSV if he were to contract it. Getting that all figured out was a fiasco. I think it is finally done though, thankfully, and he will get his first shot on the 21st. With our insurance (UMR - for anyone wanting to compare), we have a $150 copay per vial of Synagis. At his current weight, he only needs on vial per month, but may require 2 vials as he gets heavier. Thankfully, our pediatrician's office gave me the phone number to a company who helps cover that cost, and we only have to pay $50 per vial. That is SUPER helpful. The office also gave us a ton of formula samples today, which will save us from having to buy that for a while.
Wyatt is wearing a Pavlik harness for hip displasia due to his breech positioning, so we see a Orthopedic doctor about every 10 days for that. He doesn't seem to mind the harness as much as DJ and I do. It makes it much more difficult to change his diapers, put him in the car seat, and snuggle him :( I am hoping he won't have to wear the harness for a very long time. We see them again in a week, and it will have been almost 3 weeks of the harness by then. They are doing an ultrasound of his hip at that appointment, so we will see what sort of progress has been made.
I think life has become pretty routine for me at this point. Monday through Friday I get up in the morning (much earlier than I would like, as I am generally up with Wyatt from 1-3 or 2-4 am), get Austyn fed and ready for school, feed Wyatt, and get Austyn off to school. Then its just me and Wyatt all day, cuddling, feeding, diapers, checking pulse ox, recording pulse ox and feed information, taking weights, etc. I get things done around the house as I can. The acid reflux makes Wyatt very needy, wanting to be held all the time, and I oblige him. I figure he deserves it to the fullest. DJ comes home after work, and I get a bit of a break from Wyatt, while I get dinner cooked and ready, and we eat, do homework and bath time, play, etc. before its bed time.
While I am not happy that Wyatt has to have this heart defect, and our family has to endure this, I cannot say that I am unhappy on a daily basis. Thankfully.
When I was pregnant with Wyatt, I wanted information on the costs associated with HLHS. I couldn't find much. It seems no one wants to talk about it. And while I wholeheartedly understand, and agree, that your child's life is worth any amount of money, paying the bills is still a part of this situation, whether you like it or not. So, since I couldn't find the information I wanted, I have been compiling it, in hopes of providing it to another family someday.
The bills from the hospital have started to roll in. For me, my 4 day hospital stay was about $28,000 before insurance covered their portion. We owe $3000 or so out of pocket. I called to set up a payment plan, and we have to pay $184 a month for that bill. That was the lowest they would go. My OB's charge for delivery was $12,000 or so, us owing $3,200 out of pocket. I haven't gotten the bill for that yet, just the explanation of benefits, but I imagine the payment plan will probably be about the same. My spinal block was about $2000 before insurance, and we owe $250 or so on that, out of pocket. There were some smaller bills for labs, etc. for me as well. $20 here and there. Thus far, for my stay, $44,446 was billed to insurance, and our out of pocket cost is $6,882.
For Wyatt....its a whole lot scarier. We still have not seen the explanation of benefits for his hospital stay, or his surgery. But, even without those, $82,111 has been billed to insurance, and our out of pocket cost is $4545. The intensivists ranged from $600 - $15,000. The anesthesia for his surgery was over $8000, and we owe just over $4000 out of pocket on that one. A lot of our out of pocket costs haven't been calculated yet, because my insurance was waiting to hear from UMR to see what they were going to cover. My insurance (Cigna) is acting as primary for his hospital stay, so things are being re-processed. I am keeping track of each and every statement, explanation of benefits, bill, etc. that we get, to make sure things are covered correctly and billed correctly. I had to call the hospital because over $1000 was billed with my name listed as the patient rather than Wyatt's. Wyatt has a $3,000 deductible, which has been met, and a $6,000 out of pocket maximum, so in theory, the out of pocket cost for his stay shouldn't exceed $9,000. We will see how that goes. Then, of course, we get to meet it all again for his Glenn procedure.
Now, I do have this information on the cost of things, but don't ask me how to afford it. We received many generous donations from family, friends, and strangers, but even with those, there is no way we can pay upwards of $18,000 in medical bills and keep a roof over our heads and food in the fridge. I guess my plan is just to set up payment plans for everything, and cross my fingers we will be able to swing those until everything is paid off. Of course, this won't work, as the payment plan for my hospital stay is for 18 months, and we have another surgery and hospital stay before these will even be close to paid off. But, what else are we going to do? I assume a bankruptcy is in our future, I just don't know when yet.
And as I am now typing one handed due to Wyatt's need for snuggles, I will update again later. Hopefully I will get around to it sooner next time! ;)
We have been home for 20 days now. It has been wonderful being in our own home, sleeping in our own bed, being with Austyn every night, and being together every night. DJ has returned to work and is back into things full swing. I am adjusting to life as a stay at home mom, but things are going well. I can't complain about wearing pajamas all day long :) Ha! I would get dressed, but we don't leave the house ever. I promise, I put real people clothes on for doctor's appointments and things ;)
We are battling the acid reflux on a day to day basis. Some days are good; some are not. Yesterday wasn't too great, but today has been good thus far. Knock on wood. The Prevacid does seem to be doing its job, thankfully, and I think we just need to be super careful about making sure we try to burp Wyatt after every 30-40 mL's, so we don't shock his poor tummy. The Similac Sensitive for spit up seems to be doing the trick as far as formula goes. I am now taking Reglan ::runs off to take the dose I should have taken 2 hours ago:: to see if it will boost my sub-par milk supply. Trying to pump every 3 hours when you are taking care of a baby with acid reflux and you are sleep deprived is not an ideal situation, so I could definitely be pumping more frequently, but the logistics just don't work out. But, Wyatt is still getting breastmilk and all those antibodies, so that's good. He is continuing to gain weight well, weighing 8 pounds, 10 ounces this morning. I am SO thankful we are doing well enough eating by mouth and he didn't have to come home with an NG tube or a G tube.
He has to take Synagis through flu season, so his body could fight off RSV if he were to contract it. Getting that all figured out was a fiasco. I think it is finally done though, thankfully, and he will get his first shot on the 21st. With our insurance (UMR - for anyone wanting to compare), we have a $150 copay per vial of Synagis. At his current weight, he only needs on vial per month, but may require 2 vials as he gets heavier. Thankfully, our pediatrician's office gave me the phone number to a company who helps cover that cost, and we only have to pay $50 per vial. That is SUPER helpful. The office also gave us a ton of formula samples today, which will save us from having to buy that for a while.
Wyatt is wearing a Pavlik harness for hip displasia due to his breech positioning, so we see a Orthopedic doctor about every 10 days for that. He doesn't seem to mind the harness as much as DJ and I do. It makes it much more difficult to change his diapers, put him in the car seat, and snuggle him :( I am hoping he won't have to wear the harness for a very long time. We see them again in a week, and it will have been almost 3 weeks of the harness by then. They are doing an ultrasound of his hip at that appointment, so we will see what sort of progress has been made.
I think life has become pretty routine for me at this point. Monday through Friday I get up in the morning (much earlier than I would like, as I am generally up with Wyatt from 1-3 or 2-4 am), get Austyn fed and ready for school, feed Wyatt, and get Austyn off to school. Then its just me and Wyatt all day, cuddling, feeding, diapers, checking pulse ox, recording pulse ox and feed information, taking weights, etc. I get things done around the house as I can. The acid reflux makes Wyatt very needy, wanting to be held all the time, and I oblige him. I figure he deserves it to the fullest. DJ comes home after work, and I get a bit of a break from Wyatt, while I get dinner cooked and ready, and we eat, do homework and bath time, play, etc. before its bed time.
While I am not happy that Wyatt has to have this heart defect, and our family has to endure this, I cannot say that I am unhappy on a daily basis. Thankfully.
When I was pregnant with Wyatt, I wanted information on the costs associated with HLHS. I couldn't find much. It seems no one wants to talk about it. And while I wholeheartedly understand, and agree, that your child's life is worth any amount of money, paying the bills is still a part of this situation, whether you like it or not. So, since I couldn't find the information I wanted, I have been compiling it, in hopes of providing it to another family someday.
The bills from the hospital have started to roll in. For me, my 4 day hospital stay was about $28,000 before insurance covered their portion. We owe $3000 or so out of pocket. I called to set up a payment plan, and we have to pay $184 a month for that bill. That was the lowest they would go. My OB's charge for delivery was $12,000 or so, us owing $3,200 out of pocket. I haven't gotten the bill for that yet, just the explanation of benefits, but I imagine the payment plan will probably be about the same. My spinal block was about $2000 before insurance, and we owe $250 or so on that, out of pocket. There were some smaller bills for labs, etc. for me as well. $20 here and there. Thus far, for my stay, $44,446 was billed to insurance, and our out of pocket cost is $6,882.
For Wyatt....its a whole lot scarier. We still have not seen the explanation of benefits for his hospital stay, or his surgery. But, even without those, $82,111 has been billed to insurance, and our out of pocket cost is $4545. The intensivists ranged from $600 - $15,000. The anesthesia for his surgery was over $8000, and we owe just over $4000 out of pocket on that one. A lot of our out of pocket costs haven't been calculated yet, because my insurance was waiting to hear from UMR to see what they were going to cover. My insurance (Cigna) is acting as primary for his hospital stay, so things are being re-processed. I am keeping track of each and every statement, explanation of benefits, bill, etc. that we get, to make sure things are covered correctly and billed correctly. I had to call the hospital because over $1000 was billed with my name listed as the patient rather than Wyatt's. Wyatt has a $3,000 deductible, which has been met, and a $6,000 out of pocket maximum, so in theory, the out of pocket cost for his stay shouldn't exceed $9,000. We will see how that goes. Then, of course, we get to meet it all again for his Glenn procedure.
Now, I do have this information on the cost of things, but don't ask me how to afford it. We received many generous donations from family, friends, and strangers, but even with those, there is no way we can pay upwards of $18,000 in medical bills and keep a roof over our heads and food in the fridge. I guess my plan is just to set up payment plans for everything, and cross my fingers we will be able to swing those until everything is paid off. Of course, this won't work, as the payment plan for my hospital stay is for 18 months, and we have another surgery and hospital stay before these will even be close to paid off. But, what else are we going to do? I assume a bankruptcy is in our future, I just don't know when yet.
And as I am now typing one handed due to Wyatt's need for snuggles, I will update again later. Hopefully I will get around to it sooner next time! ;)
Thursday, October 25, 2012
Home
We got home around 5:15 last night. The drive from the hospital was the longest drive ever, in my brain. I couldnt wait to get home and put the pulse ox on Wyatt and make sure his sats and pulse were okay. The first night home was amazing. It was so good to be home, and to see both of our boys finally interacting. It was double good to crawl into bed with DJ, and be able to cuddle as we fell asleep. It was also nice to be together for the middle of the night feedings, even though we didn't say much to eachother (who has much to say in the middle of the night?), it was nice to not be alone.
This morning after DJ took Austyn to school, I went to the grocery store. We needed some basic groceries, and some infant Tylenol, and a LOT of disinfectants. I literally spent $50 on soap and Lysol. We bought three of those Lysol no touch hand soap dispensers, some dish soap that's supposed to be gentle on our hands, Lysol wipes, etc. We have to be EXTRA careful with any sicknesses that could come into the house, especially with Austyn in school, so anything we can do to make hand washing easier and more routine, and keep things in the house cleaner and germ free, great.
And while life at home has been great, I am still adjusting to the constant, overwhelming paranoia. We had to take Wyatt to the pediatrician today, and the lighting in the office made it so very apparent that his color isn't "normal", and then I absolutely couldnt wait to get home to check his O2 sats. He was sating at 80% when we got home, by the way. Im paranoid about his vitals, and about his color. I'm paranoid every time he cries, every time he's sleeping, every time he's awake. I'm paranoid about visitors, about leaving the house, about sleeping. Im sure that in time, things will be more normal, and I won't be completely freaked out. But, in the mean time, I even take it so far as to put my finger under his nose, just so I can feel that he is breathing.
It makes me wonder if the fear will ever really go away. Am I going to spend the rest of my life scared shitless that something is going to happen to Wyatt? Will I have these thoughts each and every day? Is there a balance between understanding the reality that HLHS could win the battle at any time, and being overly worried and paranoid? And, while finding that balance, will it be possible to be a pseudo- normal mom to the boys without wrapping them in bubble wrap to keep them safe?
It's like no matter what stage were in in this journey, there are more obstacles and hurdles to overcome. I guess eventually the consistent struggle will just be normal. And in the mean time, I will just enjoy the sweet little boys in my house, and make memories with them every day, and enjoy our family.
This morning after DJ took Austyn to school, I went to the grocery store. We needed some basic groceries, and some infant Tylenol, and a LOT of disinfectants. I literally spent $50 on soap and Lysol. We bought three of those Lysol no touch hand soap dispensers, some dish soap that's supposed to be gentle on our hands, Lysol wipes, etc. We have to be EXTRA careful with any sicknesses that could come into the house, especially with Austyn in school, so anything we can do to make hand washing easier and more routine, and keep things in the house cleaner and germ free, great.
And while life at home has been great, I am still adjusting to the constant, overwhelming paranoia. We had to take Wyatt to the pediatrician today, and the lighting in the office made it so very apparent that his color isn't "normal", and then I absolutely couldnt wait to get home to check his O2 sats. He was sating at 80% when we got home, by the way. Im paranoid about his vitals, and about his color. I'm paranoid every time he cries, every time he's sleeping, every time he's awake. I'm paranoid about visitors, about leaving the house, about sleeping. Im sure that in time, things will be more normal, and I won't be completely freaked out. But, in the mean time, I even take it so far as to put my finger under his nose, just so I can feel that he is breathing.
It makes me wonder if the fear will ever really go away. Am I going to spend the rest of my life scared shitless that something is going to happen to Wyatt? Will I have these thoughts each and every day? Is there a balance between understanding the reality that HLHS could win the battle at any time, and being overly worried and paranoid? And, while finding that balance, will it be possible to be a pseudo- normal mom to the boys without wrapping them in bubble wrap to keep them safe?
It's like no matter what stage were in in this journey, there are more obstacles and hurdles to overcome. I guess eventually the consistent struggle will just be normal. And in the mean time, I will just enjoy the sweet little boys in my house, and make memories with them every day, and enjoy our family.
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