Friday, December 21, 2012

Home for Christmas

Our trip went so well and we are home in time for Jensen's first Christmas =) We could not be happier with how smoothly everything went and how nicely Jensen recovered! I had so many cute pictures of our trip, I'm including a bunch!
  Jensen is such a great traveler! He did awesome on the trip up, he played the whole time! My parents met us at the airport and we went back to their hotel for a bit then we went to our favorite restaurant, The White Dog Cafe, for brunch! I would take a trip to Philly just to have a mimosa and chocolate chip waffles from White Dog...yum!

He was being such a ham =) He has so much personality and laughs ALL THE TIME! It doesn't matter what Jeremy does or says, Jensen thinks he's hilarious! We get a kick out of hearing that precious laugh, it never gets old. 

Jensen was totally wiped out both days of testing, but still managed to look adorable. 

Don't let this sweet face fool you, this was right before his echo that he screamed through! He has always done pretty well with echoes but he was just too tired for this one! Its a wonder they got any images at all.

The staff at our hotel are amazing. We have stayed at the same hotel for every trip and they make sure we have everything we need. They treat us so well and always ask about how Jensen is doing. We are so lucky to have found them! We had them take a quick family pic the morning of the cath. 

Jensen and daddy waiting to go back for his cath. We waited around for about 3 hours and man it was tough keeping the boy happy for that long!

He had his trusty Blue Puppy to keep him company and thank goodness for the little TVs over the beds! He watched a LOT of cartoons to help pass the time. 

This little stinker also passed the time by flirting and waving at all the nurses. I think they put him in the room by the front desk for a reason ;) He is such a ladies' man!

Post-cath! He had to lay flat for 6 hours which was hard, but he did sleep for some of it. He was so happy to be able to sit up and be held! Also, he was totally fluid overloaded so his face looks super puffy in these pictures! He was a very thirsty boy when he woke up plus he had IV fluids!

The cath went very well and although he did need interventions, the narrowing he had was more mild than they previous thought. Dr. Rome went ahead and opened up all three areas just to optimize flow through the stents and arch but he really didn't need that much work done. Now that he's had his "tune up" Dr. Rychik is hoping that we won't have to go back for a full year! As always, Jensen will determine when its time to go back by how he grows and what his sats look like. 

Of course, we had our favorite person in the world stop by to visit! Dr. Fuller was amazed at how big our "little" man is! Although he fussed for a minute, he actually let her hold him! Anyone who knows Jensen knows what an amazing feat this is!

I'm so glad that Dr. Fuller got to see some of the cute things Jensen does =) I've been telling her how amazing he is doing so it is awesome to see them together! He really does love her...and so do we! 

I can't believe how short this trip was! Even though the trip home was full of flight delays, running through the airport, and a long drive home, we are so thankful to all be together at our own house. We were so worried about this cath and are amazed at how well Jensen came through. We are so looking forward to having our first Christmas together =)  Thank you all for your prayers and messages, it really does make all the difference. I will ask for one more prayer request: please remember my heart family. There are families that do not get to be home for the holidays because they have kids in the hospital waiting for transplants, recovering from surgeries, or fighting off illnesses. Also there are too many heart moms and dads we know that will spend Christmas missing their warriors. I hope they are able to find peace through the holidays, even though they are missing their sweet angels.

I hope you all have wonderful, healthy holidays! Merry Christmas <3

Thursday, December 20, 2012


We busted out! We are on the way to the hotel after very little sleep last night. Jensen is doing great and is back to his normal happy self! Dr. Fuller came to visit him this morning and he gave her plenty of snuggles :) I will post more later along with pictures. We are flying out tomorrow morning and should be back home by early afternoon. Thank you for all the prayers and kind words! This has been our shortest trip to CHOP yet :)

Wednesday, December 19, 2012

Doing great :)

Everything is going well and he is sleeping. Everyone is happy with his post-intervention measurements and we should be discharged tomorrow morning! Thank you for your prayers!


Just got an update and Jensen did have to have interventions. He needed his stents ballooned and his aorta dilated. Dr. Fuller checked on him and said he looks great! I always feel so much better when she keeps an eye on him :) everything is going well so far and hopefully they will finish up soon so we can see him!

Finally underway

Jensen finally went back at around 1. He is with Dr. Rome but Dr. Nicholson had another case. So we have another anesthesiologist working with him today. He had his premed before he left but didn't go to sleep. He was trying hard to stay awake and was being so sweet. It never gets easier to hand him over, I miss my baby so much :( we got the first update and not much had happened yet. They had his IVs set up and just placed the catheters. We will get the next update soon. Until then, thank goodness for CHOP's chocolate cake, it was perfect for some well deserved stress eating.

Tuesday, December 18, 2012

Cath day tomorrow

Tomorrow we have to be at the hospital at 10 am. We will have to get Jensen checked-in, do vitals, and start an IV. Then there will be plenty of waiting around. We won't know exactly what time he will be taken back until we get there. Jensen will definitely have to be put under general anesthesia, which of course has more risks than just sedation. Please pray specifically that Jensen has no issues with the anesthesia, tolerates the interventions well, and recovers without clots or any of the other major complications that go along with the cath. Thank you all for your prayers and concern for Jensen. We feel love coming from NC, TN, PA and all over the US! Jensen is one lucky little man with so many people cheering him on! We will keep everyone updated as we can :)

Monday, December 17, 2012

NeuroCardiac Clinic Day

Shew what a day! Jensen is absolutely worn out and grouchy! We started our day by having an EEG done. We were not sure how we were going to keep a squirmy 10 month old still for 20 minutes, but we were pleasantly surprised. He did awesome! He watched the Disney channel (which we DO NOT allow in our house) and was totally enthralled. He watched that for the first 10 minutes then looked around and laughed at us for the last 10 minutes. He was such a good boy!

After lunch we saw Dr. Licht to talk about the results. There was some asymmetry in his brain activity, which is from the subdural bleeds. (This means that there is some space between his brain and skull on one side) Dr. Licht said that if he hadn't seen him in a physical exam, he would be concerned. However, he was very impressed by Jensen and his progress. He couldn't see any asymmetry in Jensen's movements or extremities. He didn't see any need for further imaging or to keep him on Keppra! I am so happy to be taking him off of one more medicine :)

Next we saw cardio, speech therapy, occupational therapy and physical therapy. He was great for cardio and speech. Everything seems to be on track with his speech progress. She was the same therapist that helped us feed him when he had the paralyzed vocal cord. She was completely blown away that he has been nursing since 5 months old and eating solids since 7 months old! I love hearing how great Jensen is doing :)

By the time we saw OT/PT Jensen was absolutely exhausted. He was too tired to play, sit up, roll over, or even hold his head up. He still did some things for them and showed them a few of his "tricks", but they really couldn't see all of his progress. They basically had to go off of what we told them, but they were happy that he is in weekly therapy at home and is making measurable progress.

He is now knocked out at the hotel, snoozing away! Tomorrow is going to be another long day, but we don't have to be at the hospital until 2, thank goodness! Please keep praying for Jensen to do well at all of his appointments. Also, pray for us to keep our sanity! This week is going to be very trying and stressful!

Saturday, December 15, 2012

All our bags are pack and we're ready to go...

I can't believe we are leaving tomorrow to go back to Philly! The past few weeks have been insanely busy with tons of phone calls, appointments, paperwork, errands, and squeezing in as much Christmas fun as possible before we leave!
Picking out his first tree!

We fly out of Raleigh tomorrow morning at 7 am (ewww). My wonderful parents will be there to pick us up from the airport along with our luggage, stroller, carseat, and winter coats. That cuts down on so much extra stuff we have to carry to (and through) the airport. We will have all of Sunday to relax, eat at our favorite brunch place, and prepare for the massive amount of appointments Jensen has. 

Monday we will be seeing Dr. Licht for an EEG to check for any seizure activity. We will also discuss the possibility of him coming off of his seizure meds. There are pros and cons to this that we have already discussed with our local neurologist, but I'm looking to Dr. Licht for his expert opinion. After that appointment Jensen will be seen at the NeuroCardiac Care Program. He will be seen by 7 different specialities that will evaluate his development and overall health. I am so thankful we were able to get in (we have Dr. Licht to thank for that!) because this will give us a comprehensive overview of how he is doing. 
Thank you Carli Alisabeth Photography for taking our first family pictures =)

Tuesday we have pre-admission testing. This will include a battery of other tests including a blood draw. Yuck. I am absolutely dreading the blood draw, almost as much as the cath itself! Jensen will be examined by a nurse practitioner and this is when we will find out what time we need to be at the CPRU for the cath. 

Wednesday will most likely be miserable. Jensen won't be able to eat and if he isn't the first patient in line, we will have a long wait with a hungry baby. I'm expecting this cath to take longer than the last one just because he will need intervention this time (which means the stents he has need to be made larger). This also means we will have an overnight stay in the hospital. As long as Jensen is tolerating his recovery well we will be able to go home a day or two after that. Of course, this is all dependent on Jensen and due to his rambunctious nature, I'm guessing he will have a few surprises for the cath team! 

Jeremy and I both get nervous before any procedure but we have to remember, Jensen is a superhero! He's got this!

Please pray that my child behaves and we are in and out of this procedure! We are hoping that we will get to be home for Jensen's first Christmas. We will update as much as we can while we are there! Thank you all for your prayers and positive thoughts for our little man!