Happy 1st Birthday!

I am so grateful that Luke has made it to his first birthday. And he is doing so well! He is crawling, standing with furniture, clapping, and enjoying life. He no longer has oxygen. He does continue with the Sildenafil (Viagra) around the clock. I am hoping to quit that medication soon. His only real problem- and it's a big on- is that Luke does not sleep! He wakes up 6 times on a good night and 12 plus on a bad night. Unfortunately the last 3 nights have been bad nights. Sometimes I think I am going insane:) I had no idea last year that Luke's life could be such a high quality. I feel that he has beat many of the odds. I am eternally grateful for modern medicine and talented physicians. I recognize that the future will hold more surgeries and other difficulties. But the today is better than I would have ever imagined! Happy Birthday little Luke. These pictures are of Luke with his new walker (he walks with it pretty well), eating his first cake ever (Sophie made it for him), and eating the wrapping paper rather than ripping it off (the siblings unwrapped for him).

Cardiology Appointment and Echocardiogram

Today I took Luke in for an echocardiogram (ultrasound of the heart) and cardiology appointment. Luke's oxygen saturations were 85% which is good. However the cardiologist said that his right ventricle is enlarged. This indicates high back pressures and insufficient pumping from the ventricle. Obviously the right ventricle is an insufficient pump for the body. So an enlarged right ventricle is normal for someone with HLHS. But Luke's is more engorged than it should be. So Luke has to continue with the Sildenafil (Viagra) and he has another echocardiogram in November. In the mean time he is doing well developmentally. He has 2 cute teeth, he started crawling last week, and he interacts well with his family and others. He is a blessing in our family that brings lots of joy and laughter. Here is a picture of Luke with his Grandpa Herb. I think Luke looks just like his grandpa. They sure enjoy each other.

9 Months Old

Wow, this summer has flown by and I have not posted anything about Luke for so long. He is doing well, better than I ever thought possible. He is off oxygen since early June. He has learned to roll over and sit up. He babbles, smiles, laughs, and eats like any normal baby. He is small (5% for height) and will always turn blue when ever he cries or otherwise exerts himself. But he is happy and I am grateful for every day I have him to hold. We went to the Oregon Coast the end of July for our first family vacation in a year. Luke was a miserable sleeper and traveler but he still enjoyed the trip. I'm including some pictures of his first vacation.

6 Weeks Post Op

Tuesday marked the six week postoperative date for Luke's OHS. I wanted to update his progress thus far. First, he is still on oxygen. He only has 1/32 of a liter but has not weaned completely off it. So when at home Luke has a 15 foot tether and I try to get the house clean, make meals, and care for the kids while holding Luke and dragging the cord about. When we leave the house Luke has a 3 foot tether connected to an oxygen tank that I either push or carry about. It is not easy having a baby with all of the baby paraphernalia, but an infant with oxygen is awful! For Luke's first 7 months of life I have kept him home except for doctor visits and walks around the neighborhood. But Dr. Walker the cardiologist, said that at 6 weeks post-op we could take Luke out in public. It is great to feel like we can finally go out when needed. Already I've taken him to school for my daughter's science fair, a baby shower, and church. I still try and keep him away from the crowds and I sanitize his hands when ever someone touches them (I make sure they don't see me) but still we are free from the house! It is a great feeling. Luke has become a happy baby and I know he is not hurting anymore. It makes me so thankful that he can enjoy life. He is starting to take routine naps but he still wakes up frequently during the night. He also likes a quiet room and mommy to be able to fall asleep. I am just grateful that the other kids are old enough to accommodate his quirks. Before the Glenn I was advised to get a family picture taken in case that was the only we ever had. I had my talented friend Andra Shostead take the shots. I am including some pictures of Andra's work and also of Luke at home.

It has been just over four weeks since Luke's surgery. He is starting to share smiles and laughs again. He is trying to sit up and roll over. He is still on oxygen but is slowly weaning off. Medications are the biggest difficulties right now. Especially the one in the middle of the night.

Taylor, Luke, and I spend the days together while Mark is at work and the other kids are at school. We are enjoying the beautiful weather and finally getting outside. Those two boys are great buddies!

Contemplation

I hope nobody minds but I would like to share some of my personal feelings about everything that has happened with Luke. First, it is heart wrenching to watch my sweet baby have health issues. I have wished I could give him my heart too many times to count. I have wondered why he should have to be born with such a difficult condition. I have cried and felt sorry for myself and for him.

Yet, I have had people tell me that they prayed for Luke as a family and that they had not prayed together before. Family, friends, acquaintances, and even strangers have told me that they have prayed and even fasted for Luke. I have received letters, meals, calls, emails, visits, money, gifts, and time freely given. I have been told by some that they have grown closer to God by watching Luke's struggles.

Through all of this I have grown closer to my Heavenly Father. I have seen the goodness of others and wanted to be a better person. I have come to realize that though Luke may struggle and though his life may prove short, he has worked miracles by bringing people closer to God. I believe that is why Heavely Father allows us to have trials. If in the end if we can know Him better, all our pains will be but a distant memory.

When things are hard I whisper to Luke, "this too shall pass" and hold true to a bright tomorrow.

April 20- Home For a Week

I have been home for a week now and it feels great! Things have been so busy that I have not updated Luke's progress lately. Some of you have been asking, so I'll try to put it all down.

First, Luke is on oxygen and I hate having to deal with the cords. He is tied to a 20 foot cord, tape covers his poor cheeks, and he always wants to suck on the nasal canula. It is cute but he keeps pulling it out of his nose and that's a big no no. He needs that oxygen. He is on medications around the clock and I especially hate the 4:30 a.m. feeding. At least Luke no longer fights the medications.

Sleep is my main issue lately. Luke will be happy, smiling, and laughing all day long. Then at nights he screams as if he is in terrible pain. I use the pacifier, bounce, pat, sing, and love him. But nothing seems to help except nursing. Last night I think he nursed for 3 hours straight and then every hour after that all night long. This has been going on for 3 nights and I am so tired and sore. I do not know what else to do because he cannot cry things out. I love him but sometimes I think this lack of sleep, being stuck at home, and lack of activity will put me in the loony bin.

I downloaded the pictures from my camera and wanted to share some interesting shots. I hope you enjoy our cute boy!



The IV medications Luke had right after surgery.

Luke right after the first cardiac catheterization. He is gagging from having his breathing tube pulled out. This was the time that sent him into emergency surgery.

Mark kissing Luke good-bye as he was being wheeled away to the operating table.

The monitor.

Luke at home, in his walker. He has no core strength and does not press down with his feet. So I am hoping this will help him start using those muscles. He seems happy, we will see if it works.