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.

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!

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. :)

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.

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 ;-)