Saturday, June 8, 2013

What's been happenin'

First of all, I want to give a big THANK YOU to the Dorsett family at Hayden's Heart. They were so kind and chose to sponsor us for their latest fundraiser. This included an auction, carwash and bake sale. We were so touched by this family when we met them at CHOP and are so lucky to have them as friends. They have done such great things in Hayden's honor, I know he's proud. Please check out their page, share it, and read all about their heart angel Hayden. 

Such a big boy now!
Jensen has had several doctor's appts lately, it just worked that we went almost 3 months without seeing a single doctor and now we getting all of the specialists done in a matter of weeks! I can tell you that there is a big difference in a 12 month old and a 15 month old! He's developing so much personality and what I like to call his "toddler 'tude". He is such a good boy most of the time, but when he's bad...he makes it count! We've already had a few public meltdowns and screaming fits! Terrible twos?! Yea right, it starts way earlier than that.

Loving his new swing =)
His pediatric appointment went awesome and he was a little angle! He sat perfectly still while his doctor listened to him and did the physical exam. He helped hold the stethoscope, as per usual. His head circumference was at the 11th percentile!! In case you don't remember, Jensen's head size was well below the growth charts for a while and not growing well at all. This was concerning given the amount of complications he's endured. However, he has slowly been making it up and his brain is growing! He also weighed in at just under 25 pounds. Another side note here: most cardiologists aim for a single ventricle kid to be around 30 pounds before they have the Fontan. Most people don't start performing Fontans until kids are two years old. Jensen is well on his way to reaching Fontan weight before his 2nd birthday and we are so grateful weight gain has not been an issue for him. 

He stands on his own for a few seconds at a time now!

Next we had an appointment with a geneticist at Chapel Hill. I have felt strongly that Jensen has some type of genetic issue causing not just the heart defect, but the pulmonary artery issues and neuro issues. Its obvious that he doesn't have one of the major syndrome associated with HLHS like DiGeorge's, but my mommy instincts are never wrong and I know there's more to the story. I pushed for a long time to get this testing done and finally was able to get in! They are doing a broad test to see if they find anything, which most likely they will not. I am still anxious to hear the results and hopeful that this information will be useful when genetics catches up to the Heartland. 

This geneticist was someone we had never seen before. It never gets old hearing how amazed people are when they meet Jensen, especially when they read his medical history first! She could not get over how "normal" he seems =) Proud mama moment for sure!

Next we saw his cardiologist. The echo was a terrible experience and Jensen did not want to participate. We tried just about everything to get him to cooperate and they got very few usable images. From what Dr. Robinson could see on the echo, combined with his slightly lower sats, he recommended Jensen have a sedated echo. I had a feeling this was coming but it still is not what I wanted to hear. This means Jensen will be sedated, not completely under, but it is still heavy meds. I am in the process of trying to schedule this to be done at CHOP while we are there for a visit this summer. 
You know, just shopping with Elmo.
This echo will give us a better picture of what's going on with him. The stents need to be visualized, especially the left pulmonary artery. Dr. Robinson thinks that Jensen might need a cath sooner than we expected. (We weren't expecting to have to do a cath until around the Fontan, which would be next summer.) This is definitely a punch in the gut for us. This was supposed to be our year of normal baby activities and no hospital visits. I know there are much worse things and overall Jensen is doing pretty well, but it makes us so anxious thinking he might need ANOTHER cath. I can't help but think of all the risks that go along with it. 
"All done!"
Please keep Jensen in your prayers. We are hoping that he will not need another cardiac cath but if it needs to be done, please pray this will give him the boost he needs. Thank you all so much for your support, and we love you all Team Jensen =)