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!

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!

Monday, October 15, 2012

One year ago (part II)

I felt such a mix of emotions hearing that Jensen would have to fight for his life. Anger. Hope. Anger. Denial. Anger. Sadness. Anger. Did I mention how mad I was that this happened to MY baby. I was infuriated. I did everything right. I took vitamins, ate well, exercised, planned for this baby for months, and he has to suffer? How is that fair? 
Graduation @ 29 weeks
Between my moments of fury, I would have times when I felt totally calm. It was almost peaceful knowing that yes, our baby has this terrible diagnosis. Now, what are we going to do about it? I sometimes felt lost thinking of all the possibilities. Other times I felt total clarity and knew exactly what we had to do. 

Waiting on baby boy in Philly

After our appointment with the maternal-fetal specialist I really didn’t know what we were up against. I just knew something was wrong with his heart. I was so scared and anxious to learn more. 

Exploring the campus at 67,000 weeks pregnant (well, maybe not but it sure felt like it!!)

After a grueling wait, Monday finally arrived and I went to the fetal echo armed with a notebook full of questions. I am so grateful for Dr. Robinson. He not only gave us peace of mind about Jensen's prognosis, he answered every question we had and was so patient with us. I  learned so much at that appointment. I learned exactly what was wrong with his heart and that Jensen had a chance at life. He would have a rough road with many surgeries and hospitalizations, but he could LIVE. He would be able to play sports and be rough like a typical little boy. The information we received from Dr. Robinson was dramatically different than the grim diagnosis from the high-risk OB. 

Our hero finally arrived <3

Dr. Robinson assured us that although a difficult defect to deal with, it was manageable. Kids walk around all the time with half a heart. Wait...what?? Half a heart? It was about half-way through my long list of questions when I could finally picture Jensen’s heart. It was only half of what it was supposed to be. That thought was amazing to me because this little boy kung-fu kicked me all the time! He seemed so strong for only having half of a heart. 

Post-Norwood. One of the ECMO techs took this for us.
 For the remainder of my pregnancy I became obsessed with researching everything I could on HLHS. Although I bordered on the psychotic, I amassed some serious data about hospitals, survival rates, surgeons, surgical options, post-surgical care, long-term health risks...etc. I knew the numbers, I knew the risks, I (thought I) knew the heartache that would go along with this diagnosis. I just refused to accept this heart defect as a death sentence. My boy deserved to have parents that would give him the world. It didn’t matter if I was scared out of my mind at times, he needed me to be there and be strong. So until he arrived I was determined to be as positive as possible. Some days that plan didn’t work and I was consumed with guilt and anger. But most days I was able to put my boxing gloves on and fight for my kid. 
This perfectly sums up how wonderful Dr.Fuller is.
I knew that if we wanted to give our baby boy the best chance at life, we had to go to the best hospital in the country. CHOP. There was never a doubt about where we should go. We even interviewed at other hospitals just to make sure I was not missing any detail. No one could put my mind at ease more than the staff at CHOP. From the moment I called the Center for Fetal Diagnosis and Treatment, I knew it was the place. Stepping through those doors felt like a huge weight being lifted off my shoulders. I can’t even describe the confidence I had in Jensen’s team  in the weeks prior to his arrival. 
Leaving post-Glenn!
Although it has only been one year, it feels like an eternity. Jensen is now almost 8 months old. He is not just living, but thriving. He is making me realize every single day that the diagnosis does not matter. Half of a heart or not, this kid has more life and love than anyone I know. I still put my gloves on and fight for him every day. But now, I fight even harder because he gives me a reason to be better and stronger. I thought my world was shattered October 14, 2011, but it was just beginning. He’s opened my eyes to some of the most beautiful, resilient kids who also happen to have “defective” hearts. I’ve met many amazing heart moms with incredible strength. My world is now a heart world. That means that we spend a lot of time in hospitals and doctor’s appointments, that also means we cherish every moment. Jensen has taught me life is even more precious than I imagined. The life of a heart mom is far more rewarding than I ever hoped. 


Sunday, October 14, 2012

One year ago (part I)

One year ago today was the day that changed everything. The day that my world fell apart, upside down, inside out, and all kinds of broken. October 14, 2011 is the day I thought our baby boy was not going to live. Let me set the scene for you. 
Presenting my research...12 weeks preggo =)

I was in my last semester of college and had just finished up working on a research project that I absolutely loved. My pregnancy had been going great. I was healthy, happy, and excited about graduation! I already had big plans for the nursery and wanted to get a head start on it because I just knew we were having a boy. The most exciting day of my pregnancy was going to the gender scan. I had an appointment scheduled at my OB's office when I was almost 20 weeks. Everything was going fine and all I could think about what confirming that we were having a boy. Our ultrasound tech spent a long time going over all the organs, most of which I didn't pay attention to because well, they're not as cute as seeing hands, feet, and a profile. She went through every organ and finally got to the only part I cared about and told us "its probably a boy".
 Looking back, I wish I could slap myself for being so stupid and naive. 

My doctor came in and her exact words were, "Everything is fine, we just can't see the heart well." She said she was referring us to a high-risk OB because they have better ultrasound machines. I asked her if we should be worried. She told me, "There's nothing to worry about." Ok, so I just thought he was positioned in a way that they were unable to get good enough images. No big deal. Our doctor seemed ok with it, so I would be too. 

My level II ultrasound was scheduled for the following week at UNC. I was surprised they got us in so quickly but I was happy that the appointment was during my fall break so I wouldn't miss any classes. Jeremy and I had already planned to make a day of it. We were going to go to Raleigh, eat lunch somewhere new, and go baby shopping. 

As we got closer to the day of the appointment I was getting more nervous. I didn't understand why but I couldn't shake the feeling. I just assumed it was some kind of pregnancy paranoia. 

The ultrasound took about 2 hours. They went over every single detail of the baby's organs. Of course we were anxious to confirm (for sure this time) that he was a boy and the tech got us a clear view of boy parts...we were ecstatic! Jeremy called that moment the happiest of his life thus far. That was the end of the marathon ultrasound. The tech then told us that the doctor would be in soon to talk to us. At that moment, I got scared. I realized that while we were gushing over our baby boy, the tech spent a long time looking at his heart. I told Jeremy I thought something was wrong. I felt like I couldn't breathe. I'm pretty sure this was the first time I used my "mom-intuition". 

The maternal-fetal specialist came in with the ultrasound tech, who was carrying a box of tissues. Every emotion that I felt from that point on was so physical, so raw, so painful. I knew what was coming. My ears started ringing as soon as the doctor started talking and I only heard bits of what she was saying. 

"....the baby's heart..." "....left ventricle..." "...congenital defect..." "...termination...." 

At that I let out a loud, uncontrollable sob. I hadn't even noticed the tears streaming down my face until then. Did she actually suggest that I terminate my CHILD? I had to leave. I'm not sure if I even said anything or if I just got up. I ran to the nearest room I could find, which was a bathroom. Jeremy came in with me and we just held each other for a minute...right there in the bathroom. Although a lot of details from that day are foggy, I clearly remember asking Jeremy why this happened to us. We were good people, our baby did not deserve this. 

We stayed at the office talking to counselors, geneticists and OBs for hours. They all showed us outdated diagrams of a hypoplastic heart and despite my basic knowledge of anatomy from college, I had no idea what they were saying. I couldn't think of anything other than my baby not surviving. The most excruciating part was when we were about to leave, they told us that if we wanted to "end things" we needed to make a decision quickly because they were running out of time based on how far along I was. Without even consulting my husband like we would normally do, I quickly told them not to mention that again. Jeremy and I sometimes have telepathic powers and I knew he was thinking the exact same thing. I was too disgusted to stay at that doctor's office any longer. 

I remember dreading having to call everyone and tell them the news. I knew my family would all be waiting anxiously to hear how the ultrasound went. I called my mom first. I know I didn't make any sense at all, I was crying so much I could barely get a sentence out. I told her that I couldn't bear to talk to anyone else and hung up after a very short conversation. 

Jeremy and I drove home in silence and didn't have much to say when we got home either. All I could think about were the million questions I had about my baby boy's quality of life. We would have to wait through the weekend until we could see the pediatric cardiologist, Dr. Robinson the following Monday. 

The rest is in part II...

The day after Jensen was diagnosed 

Looking at this picture brings back so many memories. This smile is totally fake. I wanted to skip taking my weekly picture that weekend but I'm glad I didn't.