Thankful...

...does not begin to describe our feelings about Lucas. We are so lucky to have such a wonderful family and an absolutely amazing son. Lucas continues to be the light of our lives!! Lucas turned seven months old in Nov and is a very active boy. He is not crawling yet, but he sure wants to. We celebrated Lucas' first Thanksgiving down at the beach with Grandma and Grandpa Rietkerk, our little turkey is getting to be quite the traveler.

We had a cardiology appointment this past week. Although Lucas continues to do wonderfully, I get down and sad after every appointment we have. Even though it is not new news, it is a stark reminder that Lucas only has half of a heart. He is doing so well, and certainly lacks no energy, but I still mourn over what I wish he had...a whole heart. His ventricular function looks good and the ventricular hypertrophy is essentially non-existent at this point. He is gaining weight perfectly, 19lb 5oz, and happy as a clam, but I don't know why I still get sad. I wish so bad that he didn't have to go through this. But he was obviously chosen for this journey. He has a fighting spirit and his presence fills a room. He is truly a gift, that smile and laugh are irreplaceable. We are so blessed to have our son in our lives, he is a true miracle boy and for that we are eternally grateful!

I am a softy...

...so much so that I can't stand to hear Lucas cry. I have always mentioned how intuitive this baby is, he knows exactly what to do to get what he wants. He has learned that mommy can't stand to hear him sad, and it is true. This works to my extreme disadvantage at night. Nearing seven months, Lucas is FAR from sleeping through the night. Last night he wanted to 'hang out' five times, yes..FIVE! He isn't hungry he just wants to be held. I apparently don't have the capability to let him 'cry it out.' I have learned now, that the letting them 'cry it out' method takes a lot of parental strength. It is no easy task to hear your child scream. We are keeping our fingers crossed that one day (soon) Lucas will want to sleep for more than two hours at a time. I do have to say that I love cuddling with him, no matter the time of day!

Halloween

Lucas was the cutest Rooster in Roseville, although he only tolerated his costume for about thirty mins! Lucas then stripped down to just chicken legs and was happy as a clam for the rest of the evening!

Cardio Visit

After two months we finally got to see our favorite doctor again. He is wonderful and we love seeing him, I wish all pediatric specialist doctors could be as sincere and compassionate as him.(Today he actually took time and explained Lucas' eye condition to us, he is a cardiologist not an ophthalmologist, but that is just how cool he is). Lucas had another good check up. We are excited to say that in the last few weeks he had a bit of a growth spurt in the vertical direction. He is now 50th percentile for both weight and height. He is now standing tall at 26.5 inches! I wish they would measure hair length on the growth chart, because for that I am sure he would be off of the charts!!

Lucas' echo showed that his ventricular function is good, although he has some mild thickening of his left ventricle wall. Our cardiologist thinks this may be due to him still being hypertensive after the change in blood flow following the Glenn. When the heart has to work harder to pump blood against high pressure it gets bigger, just as any muscle does after a hard work out. He actually increased his Captopril dose a bit. We were hoping to start weaning him off of it, but we just want Lucas to have what is best for him.. and believe me we trust in our cardiologist. After all he has saved Lucas' life twice!! I asked about a twice a day ACE inhibitor but he said that Captopril was the best for small guys like our little man. Anyways, no hypertension here we are keeping it away.

His Lasix dose did get decreased to once per day. This was done to help with the sopping diapers in the middle of the night. Hopefully means a bit more sleep for us all.

I am back to work and loving seeing all of my work friends again. Although I have worked three shifts now and it isn't getting one bit easier to leave my buddy. He is such a momma's boy, and I love it. Although, now he is turning into a bit of a Grandpa's boy also, as my dad watches him for the few hours between me and Peter's work days. It makes me a bit sick to my stomach to leave him, but I am really enjoying being productive in other manners.

We are happy to have had another good cardiology visit. Lucas continues to amaze us. His next surgery (the Fontan) will be when he is approximately 15kg (30lb), usually between 2-3 years of age. We will enjoy every second until then, and hopefully it will be closer to the age of 3, but at this rate of growth we shall see. Thank you for all of your prayers for Lucas. He is so amazing and as I always ask him.. "How did we get so lucky to get you as our son?" He hasn't given me an answer yet :)

Six Months

This past Friday was Lucas' six month birthday. I can't believe it has really been six months. Six of the greatest months of our lives. I was looking back through pictures of the last six months and I was overcome with emotion. Lucas has been through so much in such a short time. The day Lucas was born seems surreal. He was born by emergency C-section, quickly life-flighted to Stanford. I was discharged just 18 hours after his birth to go an be with my son. Starting on that day, it has been a roller coaster. One that has been filled with highs and lows, but one that today we can look back on and be proud to have ridden. We know the ride isn't over yet, we just pray it always stays smooth and we are just thankful to have our wonderful, happy, and healthy baby home with us.

At six months Lucas is sitting up on his own for short stents, rolling over from tummy to back, and very close to rolling over the other direction. He wants so bad to be mobile, but hasn't quit mastered the upper body strength needed for that. Although when sitting, he turns and props his hands on the floor as if he is about to take off..soon enough buddy, we'll be chasing you around. He is climbing on us as if we were a jungle gym. He is laughing a lot, and smiles when he sees us, especially Peter after he comes home from work. Everything is still in his mouth, as the teething continues. He most certainly has me wrapped around his little finger, so much so that we no longer sleep at night. He has become so used to nursing himself to sleep, that now every time he stirs in the middle of the night it turns into a feeding session. We need to drastically change this habit because I need more than one consecutive hour at a time. My hair is going gray and I am getting permanent dark circles under my eyes.

We recently had an ophthalmology appointment for Lucas because his eyes intermittently cross. Everyone told us this is normal in babies, but this has persisted so I decided to take him in. I am very sad to say that it seems Lucas will need eye surgery. We go back in Jan to re-check and if things are the same we will schedule another surgery for him. The doctor makes it seem like no big deal, but to me any time under anesthesia and intubated is a big deal. I am not even sure what the name of his condition is as she didn't explain anything to me despite me asking several times. I am devastated by this news, I just feel like he has been through so much already. We will just pray that his eyes straighten on their own. But again, we will do what it takes to get whatever he needs. Poor little buddy.

This past weekend we went to the zoo with our Hearts of Hope support group. Although Lucas wasn't overly excited about the animals it was fun for Peter and I to visit with all of the other wonderful families. It was a really fun day for all of the kids and families.

Let's Eat

So far Lucas is a big fan of butternut squash and sweet potatoes, he would prefer to do without the oatmeal. Toes are always on the menu as well.

How did we get so lucky...

To get to call him ours?

Do any of you heart moms (or any moms)have any suggestions for fostering upper body strength. Lucas doesn't mind being on his tummy, but he is hesitant to push up. I imagine it is because all that his little chest has been through.