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!