Thursday, January 31, 2013

Heart Month is here!

Tomorrow kick starts Heart Month and it is also the day to GO RED! We are asking people to wear red to support awareness for congenital heart defects. 1 in 100 babies are diagnosed with a heart defect, making it the most common birth defect. Although this is so common, many people still do not know about CHDs. The goal of the heart community is to educate and empower people to make a difference  so that one day these kids won't be known as the "1 in 100".

One of the ways to make a difference is by implementing a newborn screen. This test is done in the hospital at the time of the other newborn testing and quick, easy, and painless. It involves wrapping a pulse ox probe around the baby's hand and foot. This measures the amount of oxygenated hemoglobin in the blood. For some perspective, Jensen's saturations run around 80 where mine run about 98-100.  For more info about the test click here. Many states, including North Carolina, still do not have newborn screening in place to detect heart defects.  
All of this talk about detection always brings me back to when Jensen was first born. We considered ourselves blessed to know his diagnosis before he was born. He looked so healthy and even scored a 9/9 on his APGAR. I don't even like to think about what could have happened if we had taken him home, not knowing about his broken heart. 

This was our "healthy" little man before he went into surgery.

Kissing my boy goodbye as he was wheeled to surgery was so surreal. Its hard to even put into words how painful and how lost you feel knowing what your baby will face. 

Jensen overcame so many obstacles through that surgery and recovery. Jeremy and I never expected things to go so wrong. One surgery turned into two....two turned into three...the sound of the code bell as his heart rate hit zero... I vividly remember running down the hallway behind Jensen and this team as they were taking him back to the OR to put him on ECMO.  I also remember having to sign consent forms while we were running. I have never felt so hollow or confused in my life. I was consenting to something but I had no idea what. Permission for them to save my baby again? 

Then two weeks of sleepless nights, hours by Jensen's bed, endless questions to the medical staff, and so much heartache later...came this. I got to hold him again. This journey has been insane and amazing at the same time. We went from being devastated about the massive complications he suffered to rejoicing in every single movement he made. The day I held him in my arms was unforgettable. Dr. Fuller came by to visit him of course and we both cried tears of joy =) 

My goal for this month is to spread HOPE. While there can be so much sadness in the reality we face, we want to assure everyone that there is much more happiness! We are so blessed to be parents to this awesome little dude and I'm reminded of that every single day. His smile lights up the room and he has the most hilarious personality. All of that from a sick kid with a heart defect? Yes. He's amazing. He's my hope. He's the reason that I want other parents to know that things are going to be ok. Being a heart parent is challenging beyond belief, but the reward is so, so very sweet <3

There is hope, and his name is Jensen Aaron. 

Friday, January 11, 2013

New year madness

Life since Christmas has been busy (but seriously, when are we not busy?)! Jensen had a very quiet, wonderful holiday and we wouldn't have had it any other way. He was precious opening presents and we have a lovely video of him choking on wrapping paper! Jensen had so many toys we didn't even open them all! We are going to rotate through them slowly so he always has new toys to play with ;) 

We also got our pictures back from our first family photoshoot and I am so in love with them! Carli Alisabeth Photography did a fabulous job! I also ordered a ton of pictures, including a gallery-wrapped canvas from and I loved them! I definitely recommend using them for high-quality prints, they have great prices! I will be mailing out pictures to family and one very special surgeon as soon as I get a chance.

In other news on the Willis family: we are moving! We are so totally excited about this move and can't wait to get into a new house. Jeremy and I had a house lined up and we were set to close in a couple of weeks, but that one fell through after many problems with the house. But that's ok, it wasn't meant to be so we are moving on to bigger and better houses. We have several more that we are looking at this weekend and I love them all! 

We are going to relocate to Raleigh area, which is going to make our life so much easier! This will be much closer to Jensen's specialists, although we do have to find a new pediatrician. We will also be much closer to hospitals that can handle a patient like Jensen should there ever be an emergency. Not only will this be better for Jensen but I have applied to a program at UNC and will be doing my clinical rotations in Raleigh and Durham (if I am accepted). If I'm not accepted to the program, I will be getting a job in Research Triangle Park! Have I mentioned how awesome this move is going to be for us?? ;) We are VERY excited! 

As you can imagine, preparing our current house to sell and looking for a new house have kept us busy. When I'm not chasing after Jensen or taking him to the doctor, I'm cleaning, packing and organizing. Our house is almost empty and we are listing it to sell next week! It is definitely bittersweet leaving the only home Jensen has ever known. 

Jensen has been doing awesome! He isn't quite crawling, but that definitely does not slow him down! He is a mad man scooting on his butt anywhere and everywhere he pleases! Although we do not have much stuff in our house, amazingly he still finds things to get into to. He has been dubbed 'Captain Destructo' and has lived up to that name well! I joked that I don't think we could keep up with him if he had a whole heart! hah! This kid is spunky. 

Jensen had cardiology and hematology this week. His echo looked great and we won't go back for 2 months! I'm not sure what they will do without seeing little man for that long. He's very popular in the cardio office! Hematology went well too. Since he's only on one Lovenox injection daily, that means less blood that has to be drawn! He is still a very hard stick, but this last one went great. We had a PICU nurse come down to draw his labs and she listened to exactly what I told her and got it in one, quick stick. My boy was so brave and only cried for a minute <3

The next few weeks are going to be just as busy for us. Jeremy has a lot going on at work, we will hopefully have potential buyers looking at the house, and then we will be closing on our new home! And most importantly, Jensen's first birthday is next month! I will be doing a separate post for that but let me just say, I cry every time I think about my sweet baby turning one. I remember when I was hoping he would live another 24 hours. I could never have imagined how much joy this last year would bring =)

But I'll save it for the next blog...