Thursday, August 18, 2011

Caleb trying out his new birthday present


Eating the frosting and leaving the cupcake


Caleb opening up his birthday present

Yesterday, Caleb turned one year old! When I got home from work, the Big Three had his present wrapped and birthday cupcakes made. He got to open his present (with some help from his brother and sisters) and play with the paper. Caleb got a car that you can either ride on or use as a walker. He seems to like the walker part, but he looks like an old man when he uses it.

Last week, Caleb had his occupational therapy appointment. We reviewed his goals from the beginning of June. Those goals included getting on his hands and knees and rocking back and forth. He has blown past that to crawling everywhere, all the time. We joke that we need a bell for him because as soon as we turn our backs, he is gone. His therapist will continue to see him until he is walking and talking, but she does not have any concerns at this point.

Today, Caleb had his one year check-up. The pediatrician was very happy with his progress. Caleb's weight was 16 pounds, 10.5 ounces and his length was 28 inches. His head circumference was right around the 50% percentile. He got five vaccines today, including the first dose of the flu vaccine. By about 6:00 pm, he was feeling the effects of the shots, but hopefully he will bounce back to his usual happy self tomorrow.

Phil and I want to thank everyone for all of the prayers and support we have gotten over the past year. We would not have made it through this journey without all of the help we have received. Thank you all for taking care of us! It may take a village to raise a child, but Caleb has required a large city.

Looking back on Caleb's first year, all I can think of is how lucky we are. Caleb has not only survived, but he is thriving. It is unbelievable that he is caught up developmentally. We know so many babies that are struggling with difficulties either resulting from other issues they were born with or from effects of their surgeries. We have met families that have no support system and have no resources to deal with the challenges that congenital heart defects present. We thank God for all of the blessings that we have.

Monday, August 15, 2011

One year ago, we were in Ann Arbor on Monday night, waiting for Caleb to be born. What a year it has been!

I will post birthday pictures after we let him destroy a cupcake on Wednesday. I will also add a real post on Wednesday too.

This post is just bookkeeping. First, I am going to start posting monthly now with new pictures (because Caleb doesn't have a baby book, he has a blog). I will also post when he stands on his own, walks, finally gets teeth, etc. Things are just too normal to report much. I have figured out how to send automatic emails whenever I add a new post. To sign up, enter your email address in the box on the right. No more checking on Monday only to find out that I am behind again!

There is also a link to the Michigan Gift of Life website to sign up to be an organ donor. If you don't have a heart on your driver's license, you probably aren't signed up. Organ donation is a very important component in the treatment of congenital heart defects. We have met several children and babies that have had heart transplants. It is not uncommon for children with complex defects to require a heart transplant. Please consider signing up to be a donor if you aren't already.

Monday, August 8, 2011

After our trip to Ann Arbor, last week was a very normal week. Caleb still has no teeth and very little hair. He is crawling away from us now - we are thinking of putting bells on him so we know where he is. This morning, I weighed him and he was 16 pounds, 4 ounces. He is so perfectly normal, there is just not much to report.

So, this week, you just get pictures.

Caleb with Bowen in Ann Arbor




Helping Dad with dishes


The whole clan sitting on Grandpa Dougherty's tractor


Enjoying an Oreo and trying to climb out of the high chair

Monday, August 1, 2011

I actually have a good excuse for being a day late this week. If you know me, you know I don't need to have an excuse for being late, I am just really good at it. But today, I have an excuse.

We went back to Ann Arbor today for Caleb's developmental study. Caleb participated in several research studies while he was in the hospital. As part of the studies, they do a follow up at one year to see how the babies are developing. As hard as it is to believe, Caleb is nearly a year old!

We decided to celebrate his first birthday a couple of weeks early. We picked up three birthday cakes to take to the doctors, nurses and staff at the hospital to say "Thank You". I made a couple of cards and we delivered them before Caleb's appointment. It is strange to start a card with "Thank you for saving our son's life", but what else do you write? Without the surgery and care he received in Ann Arbor, Caleb would probably not be with us today.

We got to see many of Caleb's nurses when we were there. It was nice to visit and then get to leave! We also got to see two families that we met when we were in Ann Arbor last fall. Gabby got a new heart valve three weeks ago and is still in the hospital and Bowen happened to be visiting the hospital for his routine cardiology appointment.

We went up to the Chapel at the hospital and took care of some serious thanking. It was absolutely overwhelming to sit in the Chapel with Caleb sitting with us. There were many happy tears shed in there today!

Being back at the hospital with Caleb was really strange. It is like how you don't notice your kids are growing until you see them in a different context and realize just how much they have changed. Each day, we know we are lucky to have Caleb, but going back made us remember just how close we were to losing him several times. We heard several "He looks so great for a baby that was so sick" comments today. The more time that we have had to look back on Caleb's first hospital stay, the more we realize how tenuous things really were.

Caleb's assessment went really well. He tested at average to above average in each category. There are no major areas of concern. We asked the doctor performing the assessment if the hospital does a lot of this testing as part of research studies. She said now that they are able to save babies that were previously not surviving (the ones with complex heart defects and those born extremely premature), they are now able to focus on their quality of life. We are glad Caleb was born last year, not 15 years ago!

Other than the Ann Arbor trip, things were pretty calm last week. Caleb did find out that he has a tongue, so that has been a major source of fun. He is constantly clicking it. When you add the tongue clicking to the constant flirting, a trip out in public is a real hoot. He thinks he is quite the ladies' man!

Tuesday, July 26, 2011

Caleb is crawling like a pro now. He never crawls on his belly anymore. He does not sit still for very long now. Phil and Ella were trying to play chess on the floor last night and Caleb was really enjoying helping them.

Last week was a good week. The kids taught Caleb how to clap and now he will wave at the drop of a hat. Maeve is teaching him to climb stairs. She said that she is a good "trainer". Caleb is almost as much fun as a puppy.

Caleb had a fever on Sunday, Monday and Tuesday, but as of Wednesday morning, it is gone and he is feeling much better. He threw up twice on Sunday, so my guess is that it was a stomach bug.

I was thinking about Caleb not talking and was trying to remember when the other kids started talking. This weekend, we hauled out the video tapes and watched each kid at 1 year. None of them were talking much and they all looked and sounded exactly the same. Come to find out the speech delay isn't heart-related, just genetic. Caleb is babbling constantly now, but still doesn't say any real words and I am not the least bit concerned!

I have now stopped pumping, but still have a store of frozen milk, so Caleb should make it to nearly a year with primarily breastmilk. Not bad for a baby that has only nursed for one and a half days of his life.

Monday, July 18, 2011

I don't have a picture today. I meant to get one tonight, but Caleb was too tired after playing in the pool to beat the heat. Caleb still hates a bath, but he loves the swimming pool. Maybe I need colder water! I will try to get something posted tomorrow.

Caleb is now officially 11 months old. It is hard to believe that nearly a year has passed since he has been born. Time flies when you're having fun!

Caleb had a great week. He had his appointment with his occupational therapist on Tuesday. She was very happy with his progress. Based on her assessment, he is about on track in all areas with the exception of verbal skills. He makes sounds and makes noises to get your attention, but he doesn't say any real words. I am not real concerned because there are no other red flags to signal a problem. Our other kids were not early talkers, they just seemed to talk continuously once they get the hang of it. She also mentioned that he would probably make a little more progress once he got teeth. I guess your tongue likes to play with your teeth and helps to get you talking.

Caleb had his appointment with the pediatric cardiologist on Wednesday. He was very happpy with his progress as well. His oxygen saturation was 85 to 87%, right where they want it. His blood pressure was good and his heart sounded the way it should for him. He doesn't go back for four more months!

The cardiologist asked me what the pediatrician thinks about Caleb's weight (he was 15 pounds, 12 ounces at the appointment - 16 pounds, here we come). I told him that the pediatrician would like him to weigh more, but that because he was doing so well developmentally and he is still growing, he would just like to wait him out. The cardiologist agreed. I was worried that the weight was going to be a bigger problem and was very relieved with his response.

Caleb has gotten the hang of crawling on his hands and knees now. He uses the hands/knees crawling much more often than the army crawl now. He is also waving and pulling himself up to standing all the time. Several times he has found himself standing up and is not sure how to get back down. Maybe that will be next week's trick.

Sunday, July 10, 2011

Caleb had another great week. He is crawling like a pro and is pulling up frequently. We have even caught him standing up while trying to get toys out of his toybox. We have seen him holding on with only one hand and at one point, he was leaning against the toy box and not holding on at all.

Caleb's therapy appointment is Tuesday and his cardiologist appointment is Wednesday.

We have scheduled Caleb for a Neurological and Developmental assessment at U of M on August 1st. He was part of several research studies during his first surgery and as part of the studies, they assess his development at one year of age. The tests are non-invasive and will give us a good idea of where he is developmentally. The Big Three are excited about giving Caleb the test we have to do at home to fill out the written assessment portion. Nothing like performing experiments on your little brother!