Monday, August 31, 2009

Chuck-E-Cheese and the rest of the weekend

Katherine driving Chuck-E around
Riding a horse

Coming down to slide

Driving the Monster Truck, if you look up, you can see the tunnels on the ceiling

Colin in the exercauser.. standing on a phone book.. just a little too short

They are so cute together!

Katherine went to a birthday party at Chuck-E-Cheese on Saturday. Yes.. Katherine has a very active social life. She had lots of fun of course. Though her attention span on the games was low, she would start one then run off to want to play another one... needless to say, Matt and I chased her around for 2 hours. The girls really loved the play area that you climbed up and had tunnels on the ceiling, they ran around that forever it seemed like.
Katherine danced with Chuck-E and had cake.. well just the icing as always.
As soon as we got in the car, she passed out for 3 hrs! We had to make her wake up at 7 pm!
We missed the 2nd party we were suppose to go to that night at 6pm.. Sorry Jill!!

Colin's weight gain got better the past week and they decided not to increase his calories. Though we had a rough weekend with his acid reflux.. he still gained weight this weekend, but he spit up a lot each day. I talked to his nurse practitioner this morning and they are going to talk about increasing his reflux medicine once again.

Colin has started not liking his infant cradle seat.. he wants to sit up and not recline. He still loves his play mat.. but now his number one toy is the exercauser. It is the one Katherine had when she was a baby.. she would spend HOURS in that thing! We put Colin in it on Saturday and he had fun, and Katherine played with him in it.. I think she might have been having MORE fun than him.

Tuesday, August 25, 2009

Colin's Surgery Date Change and some pics

What are You Looking at?
YUM, this taste sooo good.

MOM..MOM... take me here.

Colin's surgery has been moved up one day to Monday September 14, which I like better than Tuesday. So we check in the hospital Sunday late afternoon.
Colin is doing well. His weight gain has not been up to what they want, depending on his weight gain this week, he might need to go up on his calorie count. But other than that, he is as happy and progressing nicely.
Colin has started teething, which I hoped wouldn't happen until after his next surgery. So he is chewing and gumming on EVERYTHING!
He is a very happy baby who LOVES his sister so much!

Katherine Swimming and Luau Party

Saturday we went to a birthday party for a girl at school. They had a luau. Katherine had lots of fun playing with her friends and playing pass the coconut and limbo.
That evening we took Katherine swimming, her favorite past time these days. I don't know what she will do when winter comes, but at this rate and heat we are having, she can probably swim until December. Katherine is doing really well at swimming. It scares me to watch her, but I am so glad she is learning since she has NO fear of water!
Katherine really enjoys reading these days, I hope she keeps that up.

Monday, August 17, 2009

Outing to the Beach

Saturday Matt had to work. Matt's mom came over and watched Colin while Katherine, me, Russell, and Lara headed down to Galveston to go to the beach for a little while. Katherine loves the water and sand. We got there early and stayed a couple of hours before it got too hot.
It was a beautiful day and it was great to get out and enjoy the sun and fresh air. I needed that a lot!

Colin's Single Ventricle Clinic & Photo Shoot

Friday Colin went to his bi-weekly check-up at the Single Ventricle Clinic. They are once again happy with weight gain and are glad to hear that the new formula has helped the fussiness and the gas. Colin is eating 4 1/2 - 5 ounces every 3 1/2 hrs.
They went over his MRI scans with me. Amazing technology. Everything looked right on track. He does have narrowing in his left lung artery, which he said is very common at this stage, about 50% of babies that have the Glenn, will also have this worked on. Usually this will lower oxidation levels, but it has not affected his. But they rather address it now while they are in there instead of a year from now.
The Glenn surgery will be about 5 hrs instead of the 10 hrs like last time. He said most of the time CVIUC is 3-5 days, then 3-5 days in the hospital room.
When we got back from clinic, my mom brought over her nice camera and had a "photo shoot" with Colin since he has not gotten to take professional portraits due to the germs at the studio and being around lots of people.

Monday, August 10, 2009

Future Football player... we'll have to check with his cardiologist

Matt was watching the preseason football game last night and Colin was just talking away at it.

No matter who's birthday it really is.. it's Katherine's

Friday morning, Colin went for his 4 month check up and shots. The doctors office weighed him in at 12lbs 9 oz (but with a onsie one, so about 12lbs 6 oz). Which is more than the scale we have at home, I think we will go with the doctors scale. He is still behind other babies his age, but he is slowly catching up.
Friday evening everyone came over for Lara's birthday, well Russell and Lara came over, mom and dad were already there from watching Colin all day. Katherine was very excited about Lara's birthday since they were coming over, but she was REALLY excited about candles, cake, and ice cream. Katherine helped Lara blow out the candles and lick the icing off them.
Saturday we played around the house. I tried to get Katherine to go to the splash park, but she decided it was too hot and she wanted to read books instead.. WHO's child is this, because it isn't mine! Matt, Katherine, and Seger took a nice long nap. Saturday evening Matt's mom and Morgan came over to watch the kids while we went to a baseball game with Brian and Robin. We had fun, the Astro's did not do so well that night. But we got ballpark nachos and yard margaritas, so who cares.
Sunday we were planning on going to the pool, but kept sprinkling on and off, so we never made it. Colin had a bad feeding day with his reflux, I think me and him went through a record number of outfits! I was looking forward to the pool, maybe next weekend.

Thursday, August 6, 2009

Colin's Bi - Directional Glenn Surgery - DATE SCHEDULED!

Colin next surgery has been scheduled!

Tuesday September 15 at Texas Children's Hospital here in Houston.

We are very excited and nervous, it will be so much better for his heart and his body, but will be very hard to hand him back over to the surgeons.

The second stage for children with single ventricle anomalies is called a "bi-directional Glenn." It reduces the work of the right ventricle by allowing it to pump blood only to the body, and allowing most of the blood to flow automatically from the body into the lungs. The second stage is performed when the pressure in the baby's lungs has decreased, no longer requiring the pumping action of the right ventricle to get blood into the lungs.

During the Glenn operation the large vessel that drains blood from the head and upper body back to the heart (the superior vena cava) is taken off the heart and sewn directly to the pulmonary artery. The BT shunt that was placed in his last surgery will be removed.
The Glenn operation has two major advantages. First, because the connection is a direct one between two blood vessels, rather than made of artificial matter, it has the ability to grow with the child. Second, it removes some of the work of pumping blood to the lungs from the single ventricle so that the ventricle will no longer have to pump all of the blood to the lungs in addition to all of the blood to the body, which places it at risk for early heart failure. In most cases this stage is tolerated the best of all the stages with a survival rate of 95 percent or better.

The average hospital stay is about 2 weeks. Once he has this surgery, life will be more "normal" for him. Once he heals, he can start school, be out in public, eat more at once since his heart won't be so tired. He will gain more weight since he won't be burning so many calories. The doctors tell us, he will have a normal life like every baby his age.
His final surgery won't be until he is about 3 or 4.

Wednesday, August 5, 2009

Single Ventricle Clinic, MRI, & turning 4 months old

Waiting for the Cardiologist at the Single Ventricle Clinic
Waiting for his MRI

The past week has been busy for Colin.

Friday July 31 : Colin went to see his cardiac team at the Single Ventricle clinic. Chest x-ray looked good, no change from last time, which is a good sign. Colin's reflux has been causing him some issues with eating, though he is still gaining weight. They suggested that we switch to Good Start formula. The cardiologist is very happy with his weight gain and told us to power through the reflux since he is doing so well. If he wasn't gaining the right amount, they would have to be more aggressive about it, she stressed that most kids grow out of it between 6-8 months and to hang in there until then. Colin went home with a heart monitor to record his heartbeat for 24 hours. This was just another step towards the next surgery.

Monday August 3: Turning 4 months old and having an MRI!
MRI - This is the final step before the next surgery. Colin had to be sedated so they can get a really good look at how his heart is functioning before the next surgery. It was hard because he could not eat anything past 1:00am and his MRI wasn't until 9:30am. I had a VERY angry baby that noticed he did not get TWO bottles. The cardiologist that watched his MRI said on the surface everything looked really good, but they would know more once the Single Ventricle team met on it this Thursday. After that they take their recommendations to the surgical team (which meets on Mondays). The surgical team will then decided when his next surgery will be (should be about beginning of September. ) He said we should know more when Colin goes to his next clinic visit on August 14.
Turning 4 months old - Poor kid celebrated it having an MRI. Colin is right at 12 lbs! He came home at 8 pounds, so he is gaining weight!
- He can stand on his legs for about a minute at a time
- Laughs really loud
- Puts everything in his mouth, including his toes!
- Blows bubbles
- Can roll to side to side and ALMOST rolls to tummy.
- Sits well in his purple Bumbo
- Smacks his lips when he is ready to eat.
- He is getting his shots this Friday - What fun!
On the developmental charts, he is right on track at this point.