Thursday, September 30, 2010

6 month cardiology check up

Colin had a great 6 month check up with his cardiologist yesterday. We don't have to go back for another 5-6 months! Thankfully Matt's mom came with me, the appointment was 3 hours long, it's good to tag team a toddler!
Colin had an echo done, which was non-sedated. The technician and I were worried about a 1 1/2 year old sitting still for it, but he did great. At first when I put him on the hospital bed, he cried, so I laid with him. He laid on me, watched cartoons, and ate a lollipop and let the echo tech do her job. I was very proud of him.

Then they took his height and weight - 29 inches, and they had just under 20 lbs but pediatrician has just over 20 lbs.. So basically he is 20 lbs. Which they are happy with, he has gained over 2 pounds since our last visit. His cardiologist says because I am small and Katherine is small, Colin might just not have it in his jeans to be a big baby anyways.

Blood pressures were good. Colin's oxidation saturations were around 85/86 which is about right.. He ranges anywhere from 85% - 90%.. Most of the time about 87%. So they are happy with that. His echo looked good, no change from last time. We are keeping our eye on one his heart values, it has a slight leak. It had a major leak, but during his 1st surgery (Norwood) they worked on it and it has remained unchanged since then. As long as it stays as is, they are happy with it. If it gets worse, we will have to address it. But his doctor was happy enough with it, that at his next appointment we will not have to get an echo, just a chest x-ray.

I told his doctor the best thing that has changed since our last visit, how much Colin LOVES to eat. How he begs for food, he wants food, he loves food, all kinds of food. For so long my prayers at night were related to feeding & reflux issues. Feeding is a basic fundamental of life and to watch Colin be in so much pain for basic survival wore all of us down. It was more difficult that the heart issue really. But now, his favorite word is snack and he gets ALL the snacks he wants! Colin did have to come home with a halter monitor for 24 hours to make sure he can stay off his propanol, he has been off it for 7 months now and they just want to make sure he is fine without it. Daycare said they would just spoil him extra since it has it on today ;)

The goal still is to have his next surgery (step 3 - Fontan) at 4-5 years old, as long as Colin's heart remains as is. If he regresses, it will be sooner, but his doctor really wants him to be as big as possible. It was a great visit, a little long, but well worth it!
We are so fortunate to only live 15 minutes from the # 3 Pediatric Heart Center in the nation. I love and feel confident in the care Colin receives. It really helps out with such a stressful situation to know you are getting the best care available. So we continue on our journey with very blessed news. There will be appointments in the future where we have to handle more than this, which makes these appointments a gift. A gift we are very thankful for!

I am very thankful for all that support us. I may not say it as often as I should, but thank you all so very much. Our family, our friends, our heart friends who are our lifeline on some issues, my co-workers who are so supportive, and our pediatrician who is also so happy and amazed by Colin's progress. This is easier with you all by our side. We are very blessed to have such wonderful people in our lives.

Tuesday, September 28, 2010

Weekend Shots

Katherine's 2nd soccer game - Saturday.. Cool front was not here yet.. it was a Hot one!

Houston Aboretum Nature Walk - Sunday - Cool front came in, lovely weather

Thursday, September 23, 2010

Katherine's 1st Soccer Game & Kannon goes home

This weekend Katherine had her very first soccer game. She started off strong, but her attention spanned slowly faded. Good thing we played 6 minute quarters and she came out every other quarter. They all had a great time and got some good exercise in!

My nephew, Kannon got to come home from the hospital and Katherine, Colin, Matt, and my dad got to see him for the first time. Katherine loved cuddling and holding him, Colin.. not interested one bit! :)

Sunday was a rainy, so my uncle had sent Katherine a Pirate Cupcake set, so we made cupcakes.

Friday, September 17, 2010

1 yr Anniversary - Colin's Glenn

One year ago today was a very hard day, one year ago today we had to hand Colin over for the 2nd time trusting in God and his surgeons, one year ago today Colin had his Glenn surgery. It was a hard time between his Norwood and his Glenn with severe feeding issues, round the clock medicines, tracking his weight everyday, measuring his pulse oxidization, keeping records of everything, many, many doctor visits. I was very scared when they said he was ready for the Glenn because "he is showing some signs of heart failure", words a parent NEVER wants to hear. Especially not when your child is less than 6 months old.

We checked in the hospital the night before, it was a very hard night emotionally and Colin would not sleep in the crib, so Matt, Colin, and I slept on the little fold out bed. Katherine came up that night to give her brother good luck kisses. Matt's parents came that night and my parents in the morning. When it was time, they called us up to the pre-op waiting area. We watched cartoons with Colin until they were ready for us. Then the dreaded time came…. As long as I live, I will never forget the feeling of handing Colin over. I did not want to let go, I cried, someone please wake me up from this awful dream.

We waited in that waiting room, it was slightly easier than the first, but still a painful experience to have to go through. They called to let us know that he did great and we would see him soon. All that was put off because there was an emergency in ICU..please don't let it be my son, not that I wish harm on anyone else, but please don't let it be Colin. It wasn't but in a hard fact of life we watched a family loose their child, a girl of 13 waiting on a heart & lung transplant. That day a year ago, put so much in perspective for me, life is an amazing gift we are all given, and a lot of times we don't realize how truly amazing it really is.

One year ago today, this was Colin:

Skip ahead one year:

The last year has been amazing with Colin, first steps, first words, first birthday, first airplane ride, kisses, cuddles, milestones, eating back on track, decrease of medicines. Colin is just like every 1 1/2 year old, he just has a special heart. We are so proud of his strength and courage, he is a fighter. This is a very special day to celebrate for us.

I was saddened last week when a 20 year old man with HLHS went into heart failure and did not make it. We look up to these 1st generation HLHS kids to know what the future holds. But it is not the same plan for all. The future is not written, is not set in stone. We are lucky for every breath Colin breathes and every step he takes. He will fight HLHS his whole life, we will win, but know it's a long battle.

Today I brought in heart shaped cookies to my office (130 people). I sent an email letting everyone know where the cookies where, why today was a special day, and listed some facts on Congenital Heart Defects in hope to raise awareness. So many have sent such nice & caring responses, I am very lucky for all my support systems.

I know we will have to hand Colin over once again in the future for the Fontan, so everyday we give him lots of kisses in hugs, so he knows how much he is loved!

Wednesday, September 15, 2010

Welcome Kannon Ethan & First soccer practice

My nephew, Kannon Ethan, was born early Sunday morning weighing at 5lbs 3 ounces. Not too bad for being 5 weeks early. We are just so happy that he is here and doing well. He is another miracle in our family. He is doing great and should be released out of the hospital in a couple of days. It was a long pregnancy for Lara, but well worth it. I got to hold him on Monday, he was so light and cuddly. Not like the 20 lb weight I have been hauling around lately. I think he is a good blend of Russell and Lara, though I see a little bit more of Russell in him. Can't wait until he gets out of NICU so I can hold him some more and Katherine is anxious to meet him and kiss him!

Kannon is at the same hospital, the same unit Colin was after he was diagnosed with HLHS. Kannon is just a few rows down from where Colin was before his first heart surgery. It was hard for me to go back into NICU Level 3, I have to admitt I got a little queasy. I don't feel that way about Cardiac ICU, the 15th floor where we lived for a month, Cardiology clinic, BUT NICU is hard for me because that's where we learned of Colin's special heart and there was so much confusion, sadness, uncertainty in our lives for the week we lived in NICU.
Katherine had her first soccer practice yesterday. When we were leaving, she had her shin guards, cleats, soccer shorts on BUT added a pink boa, pink sunglasses, two necklaces, a purple ring and bracelet. We had to break it to her that you can not wear all that while playing soccer! Matt took over coaching for the night, so I could wrangle Colin. Which Colin will be limited on soccer practices, he was mad he couldn't be out there with the big kids! Katherine is the only girl on her team, but she doesn't mind. Her friend Jacob is on the team, and at one time during drills, I could hear Matt telling Katherine and her and Jacob don't need to hold hands to dribble the ball down the field… oh how she keeps us laughing! Her first game is Saturday, this should be interesting!

Wednesday, September 8, 2010

Labor Day Weekend and Kick off College Football

What a great way to end summer. We had a cook out at my brother's house Friday night with my brother, sister-in-law, mom, and dad. Saturday was the first Texas A&M Football game of the season, GIG'EM AGGIES! WHOOP! Of course our whole family was marooned out!

Saturday we also had a pajama party to go to. Katherine's friend turned 5 and they had a cute party with twister (which Colin really liked), a pinata, and the girls played Wii Dance games. Colin loved playing with all the girls AND kept up with them the whole time! Colin also loved the balloons!

Sunday we went swimming with my mom and did a little shopping. Katherine was having a blast jumping in the pool, got some great action shots. She also swam 3/4 the width of the pool! Sunday evening we smoked ribs and Matt's mom came over (his dad was dove hunting).
Monday we relaxed around the house, went for a wagon ride, watched a movie while it was raining, made cookies.

Ending summer with a splash!Look at her go!

Movie time on the portable DVD player Yes, we get dressed up for wagon rides around here!