Nine Pounds

Lucas has been making up for lost time, and he is now a nine pounder. I couldn't believe it when I weighed him this morning. He is continuing to do well. We had our cardiology appointment this past week and the plan is to keep monitoring his saturations and weight gain. His sats have been hanging in the low 80s. We are so proud of him and are so thankful to be getting some quality time in at home.

Home Sweet Home

There is nothing sweeter than waking up in your own bed, with your family, in your own house every morning. I will never again take for granted just being home. We have been working to get Lucas settled and back into a routine, and trying to get him back on a normal sleeping and eating schedule. He has to take a few meds (Aspirin and Iron) once per day and takes them like a champ. We are doing a 'home monitoring program' through Stanford between the Shunt and the Glenn operations. This program requires us to take a daily weight and oxygen saturation to determine his trends and ensure that he is safe at home. He has been steadily gaining weight since we have been home, approximately two ounces per day and his sats are still in the high 70's low 80's.

We are very happy to be home and have some more family time with Lucas. He is really starting to develop a personality and is smiling a lot. We are so proud of him. He has endured so much in a small amount of time. We are just taking life day by day right now and enjoying our time at home and catching up with friends and family before we head back to Stanford for his next repair in a few months!

Home Again

Well, after nineteen days and two surgeries we are home again. It is so wonderful to be home, and we are looking forward to getting Lucas back on a schedule. Lucas' sats are ranging from mid 70s to low 80'. He is doing well and we are currently looking at an early August cath date and a early September Glenn date, but we all know that Lucas has his own time schedule and so we will just take it day by day. We are so thankful to be at home and to have had such wonderful care and LPCH. We know that this time between the Shunt and the Glenn is crucial and continue to ask for your prayers for Lucas.

Gratitude

We are now post op day number two, and are so thankful for Lucas’ resiliency and tenacity. Surgery number two went as planned. They narrowed the shunt that was placed on May 27, from 3.5mm to 3.0mm. This size of shunt appears to be a better size for Lucas as his sats have now dropped into the 80’s, which is where they were supposed to be after his first surgery. Lucas is recovering well so far. He got extubated yesterday and again he is slowly loosing the lines one by one. He began eating again last night and is handling it well. We are still hoping that his EKG changes back to baseline, it appears to be slowly changing back, but we’ll have to wait and see.

As if sending your baby off to heart surgery number two at just six weeks of age wasn’t enough for us…my grandfather passed away on the same day. He passed a bit suddenly and it took us all by surprise. He was an amazing man who loved his family, and especially his wife of 61 years. He had an amazing ability to talk with anyone, was an avid bridge player, and a die hard 49er fan. He died on his 91st birthday. Although we are filled with sadness for his loss, we are grateful for his painless death and his wonderful life. On that day, I am sure Lucas made his Great Grandpa proud by making it through surgery number two with flying colors at only six weeks of age. We will all miss you grandpa!

We have definitely been tested on our resiliency in the past few weeks. We thank you for all of your prayers and support, and we are so grateful for all of the wonderful friends we have met here along our journey. We could not make it through this voyage alone. We hope that Lucas continues to recover well. He has already changed the lives of many, and he is the most resilient person we know. We are so grateful for our little man.

BIG Step Back

We have been having a wonderful last few days. The lines were coming out one by one and we finally got to cuddle with our little buddy on Wed. We moved up to 3 West (step down unit) on Wed afternoon. Lucas got his first wagon ride up to the floor! We were so excited; this means one step closer to home right….nope.

Lucas got an EKG done upon arrival to the step down unit as part of their admit procedure. This morning during rounds we heard the team keep referring to EKG changes and possibly going back to the OR. Needless to say we were scared and needed explanation. After many lab tests, EKGs, an echo, and much debate; our surgeon came to inform us today that he indeed feels that Lucas is not safe with his over circulation of the lungs and is at risk of a coronary event. Those are the words that no parent ever wants to hear, especially about your six week old baby. Essentially what is happening is that Lucas got too big of a shunt placed and is getting too much blood flow to his lungs, which in turn is returning too much blood flow to his heart, making it work extra hard. Lucas has made an amazing recovery and we were so close to going home…and to get this news is absolutely devastating.

We want more than anything to take our baby home, let him be a baby. Let him laugh, play, and grow. It is such a struggle as a parent knowing that you are going to put your child through yet another major operation; an operation that requires more medications, tubes, lines, pokes, prods, and pain; all of which he just conquered successfully only to endure yet again. I want so bad to go home and live a ‘normal’ life; a life of ‘normal’ baby ups and downs. Today our hearts broke for our son. He will have to have open heart surgery number two at just six weeks of life. That is something that no one deserves. Please pray for our brave boy, he has more resiliency and tenacity than I could have imagined!

Progress

We are now six days post-op and Lucas is still holding steady. We are in a holding pattern right now. The team is very pleased with his progression, but there is just one thing holding us back right now, Lucas is having a fair amount of chest tube drainage. They would like to take out his arterial line and central line, but don’t feel comfortable given the high amount of chest tube drainage. No one really seems to have a clear answer as to what is causing it. The type of surgery he had does not warrant this type of drainage, nor does the drainage look as if it is due to an infection. So we will see, hopefully he will have decreased output today and they will pull his lines tomorrow. My fingers are crossed very tightly for this, because I can’t wait to hold my baby and this won’t happen until the invasive lines are out.

Lucas has started eating from a bottle, and seems to be doing well. It has been a bit of a process… at first he acted like a foreign object was in his mouth, and didn’t seem to really cry when hungry. After not eating since last Tuesday I could imagine he thought we had been neglecting him. It is hard to watch him just lay there, I feel like he has become complacent to life on his back. He is generally such a squirmy guy, we are really stifling his exercises by keeping him so confined. As more and more lines are coming out, his personality is emerging again; this is so wonderful to see.