Quickie check in!

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! ;)

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 :)

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!

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!

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!

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...

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. 

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!

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 :)

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!