Seventeen Months and Taking Steps

Caleb is now seventeen months old. Last year at this time, we were in Ann Arbor while Caleb recovered from his second stage surgery. What an exciting and wonderful year this has been.

Last week, Caleb decided that he could stand up in the middle of the floor without holding onto anything. His balance is still not great (he stands like a sumo wrestler and swings his hips to keep upright), but he can do it. Sometimes, he gets so excited clapping for himself - he certainly doesn't lack self esteem - that he falls back down. He has also taken several steps. Walking is still just for amusement, not transportation. As far as we can tell, everything is working just fine and it is just a matter of time before he gets it all figured out.

Caleb had his third RSV vaccine today. He did fine in waiting room at the pediatrician's office, but as soon as we went to the exam room, he started crying. The bad thing about getting a shot once a month is that you obviously don't forget between appointments. After some screaming and giving the nurse some really dirty looks, he calmed down and we were on our way.

At today's appointment, Caleb weighed 19 pounds, 5 ounces. That puts him at the 0.5 percentile. He is still growing at the proper rate, just at the bottom part of the curve. To be at the 50 percentile, he would need to weigh 6 more pounds. The nice thing is that we are really getting our money out of the 9 month old pants.

Caleb still doesn't say many words. His occupational therapist said that he may put talking on the back burner right now while he is working on walking. He does say "Mama" for me, Phil and Karen (our great daycare provider). He will occasionally repeat a word you say - we've heard "hot", "no", and "down".

Overall, Caleb is still doing amazing. As far as we can tell, other than working with some modified circulation, he is a normal toddler. Who would have thought that we would ever be able to say that?

In an effort to help out the Congenital Heart Defect Community, we are selling paper hearts for $1 to help Faith's Angels. Faith's Angels is a group out of Sparta, Michigan that was created by Faith's parents after she died from a congenital heart defect. This group focuses on raising awareness and supporting CHD research. Eighty percent of their donations go directly toward research. Just this fall, they provided a four year research grant at U of M for $7500 per year. If you are interested in purchasing a heart and having it proudly displayed in the windows of Cogent Engineering in beautiful downtown Alto, please contact me at jen@cogentengineering.com. The hearts are sold in the month leading up to Valentine's Day, the official Congenital Heart Defects Awareness Day.

Merry Christmas and 16 Months Old

Merry Christmas!


Christmas with the Wieland Cousins


Hanging with Dad and Finally Growing Some Hair


Loving the Cell Phone

Merry Christmas!

We have had a wonderful Christmas, spending time with our families and celebrating all of the gifts we had before a single present was opened. We hope you were as fortunate.

Caleb is growing and developing on his own terms. He says about five words, but understands nearly everything we say. He is still not walking, but can get into whatever he wants. He will only stand on his own for a few seconds when he is distracted, but he will stand in his high chair as long as he can get away with it and will climb on anything.

Caleb has learned some new tricks. Now, when he knows that he is in trouble, you can see him make a conscious effort to be cute. He wrinkles his nose, tilts his head down and looks at you sideways. His teen years may be a real challenge!

After my last post, Caleb came down with the stomach flu and felt pretty crummy for about 7 days. After eating crackers to settle his stomach for a few days, he decided he didn't need anyone to feed him with a spoon anymore, he was going to feed himself. After a week of prodding, he will finally eat from a spoon again.

Now he has a runny nose, but I expect that at least until April. We seem to pass things from person to person in this house late spring. For a little guy with only semi-oxygenated blood and a diaphragm that only partially works, he sure can deal with a cold. Living in this house, that is a true blessing.

Caleb had his second RSV vaccine on Friday, so he is still protected against that. Dealing with the insurance company and the vaccine provider is proving to be all kinds of fun. This month it took three phone calls, one of which was over 30 minutes, but we were successful.

We are continuing to work on talking, standing and walking, but I have a sneaky suspicion that we will only make progress when Caleb feels like it!

Thanks for your continued prayers and interest in Caleb's well-being!

Cardiology Checkup

Caleb had his appointment with the pediatric cardiologist today and everything went very well. His oxygen saturation was 90% which is great for someone with his heart defect. I am thinking that the sensor at the pediatrician's office is not very accurate - our last couple of readings there were in the upper 70's.

Caleb's blood pressure was good and his EKG was normal for him. The cardiologist was happy with how he is looking and how he is developing. He is ok with his growth, he said that maybe he will just be a little guy.

Caleb's Enalopril was increased to adjust for his growth and he still gets 1/2 of a baby aspirin each day.

Because it has been five months since we have seen the cardiologist, we had several questions:

What is the timing for the last (hopefully) surgery?

The timing for the last surgery is mostly up to us. Most kids have the surgery between 18 months and 4 years. There are two different ways that this surgery, called the Fontan, is performed. The surgeons in Ann Arbor usually prefer the surgery that is done on younger children and that is what we assumed we would do when we left Ann Arbor last year. Now, looking at Caleb and how small he still is, we are thinking that maybe the Spring of 2013 would be best. Caleb would have another year to grow and get stronger.

Why is Caleb on Enalopril?

Enalopril is technically a blood pressure medication. It dialates the blood vessels and lowers blood pressure. This makes it easier for his heart to pump. There are no concerns with Caleb's heart function, it is just a standard measure to make things as easy on his heart as possible.

When will Caleb have another echocardiogram (echo)?

Because Caleb would need to be sedated to get a good echo (a detailed ultrasound of his heart), the cardiologist does not want to do one unless there is a reason to. Everything about Caleb's heart looks and sounds good and we are not seeing any problems at home, so there is no reason to do an echo at this time.

Things are going so well, Caleb does not need to go back to the cardiologist for six more months and we could not be happier.

While Caleb has turned out to be a textbook heart baby after his first surgery, some of the babies that we met in Ann Arbor are dealing with some major health problems. We would appreciate it if you could say a prayer for Maggie and Gabby. Gabby has other health issues in addition to her heart defect and her future is quite uncertain. Maggie has the same heart defect as Caleb and her heart did not enjoy the new circulation after the last surgery. She is in the hospital awaiting a heart transplant.

Phil and I really appreciate the love and concern everyone has shown Caleb and the rest of our family. Thank you for all of the thoughts and prayers that have gotten us to this point!

15 Months Old

Caleb is now 15 months old. He officially has two bottom teeth. He bit himself the other day and learned that having teeth is a responsibility!

We are making some progress in the walking department. He has stood on his own several times. He usually needs to be concentrating on something else and he sits down when he realizes that he is standing, but he can do it. He is also getting to the point where you can see that he is thinking about walking, but crawling is so much faster.

Caleb is saying "Mom" and "Uh-Oh" with great regularity now. Today, he yelled "Mom" to get my attention. It's cute now and will get old really soon! He also says "Uh-Oh" when he throws something on the floor which is very frequently. I think he was talking to Phil on my cell phone this afternoon. I heard a lot of "Hi" and "Da".

Now our focus is kissing. He has learned to blow kisses and tries to kiss us now. It's like being attacked by a very wet fish.

Caleb loves to climb the stairs. He has not figured out how to come down yet. Whenever we try to teach him to go down backwards, he realizes there is one more stair to climb and up he goes again. He climbs to the top and yells for someone to come get him. He is pretty sure the rest of us are his professional support staff.

Caleb had his 15 month well baby checkup yesterday. His weight was 18 lbs, 9.5 ounces. That puts him at the 0.4 percentile. He is around 10 percentile for height and 75 percentile for head circumference. His oxygen saturation was 77%. Overall, the pediatrician was very happy with his progress. He was not worried about the delayed walking or talking. He said that being a boy and the fourth child, we should be happy if he talks before kindergarten! He also said lollipop kids (little bodies and normal sized heads) take a little longer to walk because they are top heavy.

Caleb is still caught up with his vaccines and with the exception of flu shots and his RSV vaccine, he is all set until school! On that same note, after some fighting with the insurance company, Caleb will be getting the RSV vaccine again this winter. That is a huge relief with all of the bugs that come into our house.

Around Halloween, Caleb decided he didn't need a bottle anymore, so now he is totally a cup guy. That was a completely painless transition for all. I am guessing getting rid of the pacifier will not be that easy.

Caleb has an appointment with the cardiologist in December, so we will have more detailed information as to how he is doing from a heart perspective.

14 Months Old

At the corn maze and pumpkin patch


Visiting the fort on Mackinac Island


Checking out the Cut River Bridge


Standing at the top of Castle Rock

Caleb is now 14 months old. It has been a very busy month!

Caleb was fighting a cold at the end of the last post. I ended up taking him in and found out that he had another ear infection. That makes three so far. The ear infection was not affected by the Amoxicillin, so a week later, we switched to Omnicef, a more potent antibiotic.

While we were at the pediatrician's office, I asked them to check his oxygen saturation. His color has been more blue than usual, but it has always been better than they expected based on his numbers, so I wasn't terribly concerned. He was acting normal, just looking a little Smurfy. I got to see what happens when people aren't used to a baby with only half a working heart. The nurse hooked up the monitor and Caleb's saturation leveled out in the upper 70's. She asked the other nurse for the other sensor and asked her to send the doctor in. I noticed her concern and mentioned that was what I expected, but it wasn't until the pediatrician came in and reassured her that the terrified look left her face. The doctor explained that if they saw those numbers in a baby with a normal heart, he would have already been rushed to the hospital.

We aren't sure whether the ear infection is gone or not, but it is not bothering him, so we are calling it good. He had a fever Sunday and Monday, but now he is back to normal.

Caleb now weighs 17 pounds, 13 ounces. He has moved to the 0.3 percentile! He is a very good eater and there is really nothing we have found that he does not like. He is making some serious progress with a toddler cup now.

Caleb is finally getting a tooth. We can now see the ridges on the top of the tooth poking through, but that is all so far. I will post a picture when we actually see it!

Caleb is not walking yet. He is getting cockier about letting go when he is holding onto things, but still is not standing on his own.

We have switched to occupational therapy only once a month. Because we are just making sure that he can master walking and talking, a weekly visit is not needed at this point. He is making some progress on talking, but he still doesn't say any words we can really understand. He says something that sounds like "Mama", "Dad", and "Ella" and he does say "MMMM" when he is hungry.

Since my last post, Caleb has attended his first Alto Festival, ridden in a convertible in a parade, visited the Upper Peninsula, finished his first corn maze and visited Art Prize. He is certainly making the most of this fall!

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.