Ugh

We have known since the day Lucas was born that he is on his own time schedule... he wanted to make his appearance five weeks early, and now he has apparently decided that he doesn't want to wait in line, and that it is time for his next surgery. As he continues to grow, unfortunately his shunt isn't growing with him, as it is plastic. This is a blessing and a curse. He is doing a wonderful job of growing and eating, yet his sats are decreasing in response. His oxygen saturations are making their way into the 60's when he is asleep and mid 70's when awake. We knew the next surgery was looming, but we didn't quite realize it would be approaching so quickly.

The shunt was placed when Lucas was about 7 pounds, and now he is nearly 13lb, he is clearly outgrowing his shunt. It is not certain yet whether or not they are going to go forth with the Glenn or if they are going to go in and unclip the shunt that is currently in place. At this time we are unsure of an exact date, but we do know it will be in the next few weeks, possibly even next week after his cath.

I want so bad for Lucas to not have to go through any of this. I know it is what he needs and we knew it was coming but it is not getting any easier. It scares me so much that they are going to permanently change the blood flow pattern through his heart. Isn't there an easier way? Please keep Lucas in your prayers. He surprises us every day with his strong will and perseverance and we know he will continue to do so.

Three Months

It is so hard to believe that it has been three months already. It literally feels like just yesterday that I was still pregnant and anxiously awaiting his arrival, seriously where does the time go? In three months Lucas has changed so much. He doesn't look like a newborn anymore that is for sure. He is becoming a very handsome little guy with lots of rolls, who is now twelve pounds. (We were hoping to make it to twelve pounds at twelve weeks and that is exactly what he was when I weighed him this morning). Not that we are proud or anything but, after Lucas' surgery he wasn't even on the growth charts, now is almost in the 25th percentile..that-a-boy!! At three months he is starting to discover his hands, which go directly into his mouth after discovery. He is grasping for things that are in front of him. He is starting to smile when he sees us, and he has also developed a very identifiable, loud wale when he isn't getting what he wants.

We are quickly approaching his cath and his next surgery. It would be a lie to say that we are not scared and afraid. We have found that one of the hardest things about being heart parents is not living in fear. This journey certainly requires a lot of trust and patience, as well as the flexibility and the humility to accept change and endure all of the paradoxes that persist. It has got to be the hardest thing to watch your child go through the numerous tests, procedures, pokes, prods, and mostly the dreaded 'double doors.' As his surgery is approaching I find myself having more and more flashbacks to his last hospitalization. I absolutely hate watching him lie there in bed with all of the lines and monitors attached with nothing I can do to help, yet, I am in awe of modern medicine and what they are able to do. I am absolutely dreading returning to Stanford, but at the same time we are looking forward to having his Glenn behind us and being able to live without the black cloud of a looming surgery for a few years. My heart is getting heavier with each day that we get closer, I just can't imagine going through all of this again when his last surgeries are still etched so clearly in my mind. He is certainly so strong willed and we know he'll persevere with flying colors, nonetheless, it is difficult to endure. We are so proud of his developing personality and spirit.

We love you little guy, Happy 3 month Birthday!!

Firsts

We had a wonderful extended weekend on our first trip together as a family. We left on Wednesday night and headed to Corcoran for Lucas' first visit to Grandma and Grandpa Rietkerk's. Although he slept through most of it we could tell he was very impressed with Grandpa's new Olives and Pistachios. We headed to San Luis Obispo the next day and made a few stops at our favorite wineries along the way. Following our wine tasting we headed to Avila Beach for our first family trip to the Condo and to the beach. The highlight, and reason for the trip, was Uncle James and Aunt Megan's wedding. It was a beautiful day and such a fun celebration where we got to visit with many long time friends and family.

Going to a wedding with an infant is certainly a different experience than going to a wedding an year ago, nonetheless fun, but just different. Lucas and I sat inside away from the crowds to prevent over stimulation or illness. He was not overly fond of the music, so we made frequent trips to the car for some quiet time. Overall he did surprisingly well, and we are so proud of him.

We are so glad and grateful that Lucas got meet so many of the people that pray for him continuously. Prayers and support are so important to our family. Lucas is fighting so hard and we are coming up on his next big operation. Every day we hope and pray that his saturations remain in a tolerable range. They have slowly been dropping and we are fearful that he will need his next operation prior to his scheduled date of Sept 10. Lucas is doing everything we are asking of him right now, he is eating well and most importantly he is getting to be a baby. Although Peter and I are dreading the next operation, we know it is what our son needs. We wish every day that Lucas didn't have to endure this fight, but we know that he was chosen for this because of his strength and tenacity. We thank all of those family and friends that we saw, for their support and prayers, and for all of you who haven't met our little miracle yet for your prayers. Lucas is truly the light of our lives and has impacted so many lives of others. We can't wait to continue showing him the world, and are so thankful for our first trip as a family to celebrate the love of an amazing couple.

Little Tank

Lucas is continuing to grow well, he is now almost a whopping ten and a half pounds. We are very proud of his eating habits, even if it means he is eating every hour and a half to two hours throughout the night. We'll take the sleep deprivation for a happy growing boy any day. With his continued growth comes the decrease in saturations. Due to the shunt being of synthetic material, it is unable to grow with him, therefore, as he grows there is proportionately less oxygen being shunted to his lungs and his sats decline. His sats have slowly now dropped into the upper 70's. We are praying for his continued growth as well as his safety leading to the next surgery.