Thirteen Months Old

Playing on the bed is one of Caleb's favorite activities. He bounces, flops down, rolls around and laughs like crazy.

Caleb is now 13 months old. Last week, he weighed 17 pounds, 4 ounces. That puts him at the 0.2 percentile. He has been on that same growth curve for months now. He is growing at the proper rate, he just happens to be doing it well below the standard.

He is now saying "Da" for Phil quite often. He does say "Mama" sometimes too. He'll wave if you tell him Goodbye or Hello.

Caleb is not walking yet, but he is always standing up and holding onto something. Now, he pulls himself up on your legs when you are standing and gets mad when you want to walk away.

Now that school is back in session, he is back to occupational therapy once a week. He is doing great with his motor skills. Last week, he crawled all over the place and played with all the cool toys the therapist brought. We are now working on trying to get him to say some more words. We are noticing more talking each week.

We can see his front two bottom teeth, but they are still not through yet. This has not kept him from eating everything in sight though. One day he was eating Wheat Thin crackers. If you suck on things long enough and provide enough drool, you can eat anything.

Caleb has a cold right now, but he is making it just fine. He only had one really bad night so far, but is still really snotty. He is pretty happy and is taking his job as official trash can emptier very seriously. He has a love/hate relationship with Kleenex. He hates to have his nose wiped, but he could pull them out of the box all day long.

Overall, Caleb is doing amazing. We have noticed no problems with his hearing or his vision. We haven't noticed any developmental issues. He is a good eater and is making some progress using a cup.

Over Labor Day weekend, we got some pictures of Caleb with his heart buddy Ben. Ben was born four days before Caleb and had his first surgery a day or two before Caleb's first surgery. Ben's Mom and I are providing informational packages to parents in Grand Rapids whose children or unborn babies are diagnosed with a heart defect requiring surgery. We thought it would give people hope to see these two together after a total of seven surgeries between them.



This is what Caleb looked like one year ago:



And now for my Public Service Announcement. If you have ever considered organ donation, but have not yet signed up, here is a link to a story that may help you to make the final step. The boy in this story has Hypoplastic Left Heart Syndrome, a defect similar to Caleb's, but the left side (the stronger side) of his heart did not form correctly. He met his donor's family just recently and there is some great footage of the meeting. If you want to sign up to be an organ donor, you can click on the icon on the right side of the blog and you will go right to Michigan Gift of Life, the official organ donation database for Michigan.

Tommy's Story

Baptism

The whole crew


Caleb in a dress

Caleb was baptized in our church this past Sunday. Last year at this time, the thought of getting Caleb baptized in the presence of our families and church family was something I barely allowed myself to dream about. After his first surgery, the nurse in the ICU asked if we wanted the chaplain to baptize him in the hospital. Phil and I decided that we would wait and that Caleb should be baptized in his home church. Sunday, we were sure we made the right decision.

We decided to have Caleb baptized in the gown that the Big Three all wore when they were baptized. They were a lot younger when they were baptized, so we will probably have some explaining to do when Caleb sees the picture of himself at one year old in a dress. Hopefully, we did not cause any permanent scarring. The baptismal gown was lovingly sewn by a very special person when Ella was born - thanks Grandma Pat! She used fabric from my wedding dress and beads from my sister's wedding dress and made it in honor of my mother who had died when I was pregnant with Ella. The significance of the gown trumped any issues we had with Caleb in a dress.

I tried mightily not to cry too much, but the joy I felt was overwhelming and I did need a few tissues. It was wonderful to have our happy, healthy little boy climbing all over me with our family and church supporting us still - as they have all the way along our journey! We could not have made it through this adventure without the love and support of our church, our family and our friends.

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.