Thursday, November 22, 2012

Happy Thanksgiving!

I hope you all had a wonderful Thanksgiving :) I'm sure you all know what we are thankful for, but just in case...I'm making a list!

First and foremost, we are thankful for our beautiful boy. He has changed our world and made us crazy, but I wouldn't change a thing. I love that kid more than words can describe. He's my sunshine, my hero, my everything.

Next, we are so grateful for our families. They have done so much for us in the past year especially, we could never thank them enough. Jensen is lucky to have such a wonderful family!

Jensen has a massive "dream team" of people that have saved his life and have taken great care of him. There are too many to name them all, but here are some: Dr. Fuller, Dr. Nicholson, Dr. Rossano, Dr. Licht, Dr. Robinson, Dr. Tennison, Dr. Hipps, many many wonderful nurses in the CICU, the amazing PICU nurses who draw his blood at UNC, the lovely ladies at the pediatrician's office who deal with insurance for us, Lisa his physical therapist, etc. There are so many people that have taken care of him and made sure he had the best shot at life. Thank you is not enough.

Of course, there are a ton of people who support Team Jensen! Without your prayers, encouragement, and kindness we would not be where we are today. Friends from back home, new friends in NC, people we have never met...everyone has been so concerned and passionate about Jensen and his well-being. We are sometimes overwhelmed at the outpouring of love we get! We will always remember all the support we have received on this journey and will make sure Jensen knows how much he is loved!

Here are some pictures from our trip to TN and of Jensen's first Thanksgiving!

Emily =)

Adison =)

Ab & Em being silly

I forgot to put the cranberry fluff  and jelly out before the picture, but this was most of our food. As you can imagine, with only Jeremy and I eating, we have LOTS of leftovers!

My whole heart <3

My handsome boys!


Happy Thanksgiving from the Willis family!

Thursday, November 15, 2012

Not ready to go back yet

Life in the Willis house is just as crazy as ever! Jensen keeps me super busy and laughing all day long! This kiddo has so much personality, I can't take him anywhere without him getting assaulted by little old ladies! (Of course I have to make his hands and feet inaccessible and slowly back away from them so they don't touch him and give him the plague.) He is such a flirt =)

Jensen had his first experience playing in the bath tub today! He was a slippery little fish and kept wiggling out of my hands while I was trying to bathe him. This was the look he gave me when escaped while I was washing his hair! He had a blast and loved playing with all of his new bath toys (like he needed more toys! hehe!). 

We had a cardiology appointment this week. Jeremy and I have both had a feeling that we will be seeing Philly sooner than later. My mommy-spidey senses haven't let me down yet. Jensen is due for his cardiac cath in the next month or two. After  his Glenn, CHOP told us to expect a cath in 6 month-a year. This is all so expected but somehow it still feels like a shock. 

Jensen was great during the echo, even though he was a bit squirmy. He is over 20 lbs now!! Dr. Robinson was pleased with his progress and his physical exam. However, the echo showed a few concerning areas: 
1) Turbulent flow through the stent in his superior vena cava (indicative of narrowing)
2) Decreased flow through the stent in his pulmonary artery
3) Narrowing in his aortic arch

The stents were the areas we knew about, the aorta issue is new. The two stents will need to be dilated, since they are essentially a foreign body and do not grow with him. (I mean, look at this chunky boy, of course he is outgrowing his stents!) The narrowing in his aorta will need to be dilated as well. The echo is definitely not the best diagnostic tool to use and the cath will give us the definitive answers about the status of his stents and also of his Glenn connection (which has always worried me). 

So now starts the familiar routine of referrals, authorizations, scheduling, searching for flights, booking a hotel, etc... I am anxious to get to Philly and get this over with.  Dr. Robinson said that Jensen could stay stable like this for another 6 months. However, there really is no benefit in waiting to do the cath so he advised us to get it done as soon as possible, without rushing. (Yea right, I was ready to head to the airport after that appt!) 

I am absolutely dreading this trip. Lately, I have seen so many families have massive complications from the 'minor' procedures. Cardiac caths are still a surgical procedure and are still invasive. The risks include death, stroke, clots, and many other scary things. That reality is terrifying. I keep thinking that the more we put Jensen through procedures like this, the higher our chances of encountering some of those risks. Jensen has been through enough already and I hate the thought of doing this to him again. I know it is life-saving, so there really isn't a choice, but that doesn't make it easier. 

Another fear is that Jensen will suffer developmental setbacks from this. With the upcoming cath and the Fontan (last surgery) looming over our heads, we are so nervous about him bouncing back. This brave little soul has already proven himself to be extremely resilient, but I worry about that resiliency waning as he gets older. His brain has suffered  insult after insult and I am afraid that it can only handle so much before it stops making up for losses and overcoming such massive damage. Every week at physical therapy he makes huge strides and is on track with what he should be doing. I'm so worried that all of his hard work won't count for anything if he has a complicated recovery at the next surgery. 

That is our way of thinking now. Yes, this cath is considered minor. Yes, it should only be an overnight hospital stay. But those "minor" things start a wildfire in my mind of all the possibilities and every scenario of what could go wrong. I love this little boy more than life itself and I don't want anything to stand in his way. He's doing amazing things and is such a warrior, but I hope this next battle isn't too hard on him. 

Please keep us in your prayers as we get ready for our next trip to CHOP. We are hoping that the cath will be scheduled after we spend our first Christmas together at home! 

Thursday, November 8, 2012

Vote for Jensen!

Not for President (yet) but for a Halloween contest! Sisters By Heart is a non-profit started by a group of women whose children have HLHS. They provide care packages for newly diagnosed parents which contains all kinds of hospital-stay essentials. They also do tons of advocating, research, and education about HLHS to help raise awareness for the medical and non-medical communities. They are a fantastic organization run by a bunch of fabulous moms =) So, head on over to their Facebook page  and vote for Jensen in their Halloween album by "liking" his picture! He is the cutest little biker dude around!Thank you all!

Sunday, November 4, 2012

Growing up

The last couple of weeks have been jam packed with lots of growing up and firsts for Jensen! He is doing so well in physical therapy. Since he started sitting up he has just taken off and done amazing things. Although he does have some weakness on his left side from the stroke, he has already overcome much of that. He is now beginning to "even out" and strengthen his back muscles (he was previously only using his stomach muscles) so he sits up straight, even though its hard to catch a picture of it!

We have been weaning ourselves off of checking his sats so often. Now we only check his sats while he is sleeping every couple of days. I must say I am loving the freedom from the pulse ox. I actually sometimes forget about checking his sats because he seems so "normal" to me. 

Jensen is such a big eater these days! He loves almost anything we give him, especially carrots! He gets excited when he sees food and likes to help feed himself by grabbing the spoon (and sometimes clapping on the spoon, which makes food splatter everywhere). So many HLHSers have issues with feeding and we have been so lucky with Jensen. He eats like a champion and does not have any trouble gaining you see all those rolls?!

We took Jensen to his first pumpkin patch! He was not too interested in taking pictures, but did love playing with the hay bales. He was super cute in his Halloween outfit and loved watching us carve pumpkins later. 

Speaking of's pics of our little outlaw biker on his first Halloween =) Oh man we had so much fun getting this costume together and taking a million pictures! We looked through a ton of costume ideas and finally decided that although the typical baby animal costumes were cute, our babe is tough. So we dressed him up as the tough guy that we all know he is! (Plus, we are big fans of SoA so we got a kick out of this! hah!) I know, I know, too much cuteness right?!

Jensen is so observant and interested in what is going on around him. I see big things for his future (world famous molecular biologist perhaps?). Jensen's personality is shining through more and more and he has been such a blast to play with lately. He changes constantly and learns new things every day. Just today he sat up in the buggy at the store for the first time and he fed himself dinner (which made me cry!). He is now working on his third tooth and will be getting his first haircut very soon.He's growing up way too fast.

 With the holidays coming up I am so excited to take him to all the festivities and start our own family traditions. I know he will love looking at Christmas lights and our Christmas tree. He may be too young to understand what is going on, but we are determined to make the holidays extra special for him. We feel so blessed to have him with us after all the heartache we have all been through. I can't imagine our life without him and I'm going to make sure he knows just how loved he is. (That means our house will look like the Griswold's  this year to impress our very observant baby!)

Hope you all have a wonderful week!