Sunday, December 25, 2011

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!

Wednesday, December 7, 2011

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!

Tuesday, November 22, 2011

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.

Tuesday, October 18, 2011

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!

Sunday, September 18, 2011

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

Friday, September 2, 2011


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

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

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

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

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

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

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

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!

Monday, July 4, 2011

Monday, July 4, 2011

Caleb has learned a new trick since last week. Now he can pull himself to a standing position on his own. The other night, we laid him down for bed and he was crying in his crib. When I went back to check on him, he was standing up. He has done it several times since. He has even pulled himself up using my pants.

He has also started to do a little more crawling on his hands and knees. He starts with the knees, but if he is planning on going very far, he drops to his belly and scoots away. He is getting pretty fast and no distance is too far now.

We have really been pushing Caleb to eat. He still gets about 24 ounces of milk per day and lots of solid foods. We give him finger foods several times a day and then offer baby food, applesauce or yogurt. It looks like our efforts are paying off. I weighed him yesterday morning and he was 15 pounds, 8 ounces. Now if we can keep making this kind of progress to store up some weight before he begins walking.

This week is pretty slow, but next week, Caleb has his occupational therapy appointment on Tuesday and a cardiologist appointment on Wednesday. Hopefully, we get a good report on his heart and everyone is happy with the progress he is making.

Sunday, June 26, 2011

Sunday, June 26, 2011

Enjoying a chocolate ice cream cone

Eating muffins with Maeve

Caleb had his occupational therapy appointment last week. He did a good job showing off his skills. He crawled, he drooled, he stood propped against the couch. He needs to work some on his form, but overall, he is doing great! Since Tuesday, he has already started using his knees more and is showing some interest in pulling himself up.

I realized that there are some little things that I probably have not included yet. So here are some things you should know about Caleb:

- He is 10 months old now.
- He still has no teeth.
- We have not found a food he will not eat.
- He eats all the time.
- He still has not made it onto the charts for weight. He would need to be about 1.5 pounds heavier to hit the 1 percentile weight. His constant motion and success at crawling are not helping the weight gain. Bring on more chocolate ice cream!
- His vision and his hearing seem to be just fine.
- He is on two medications per day. Three doses of his heart medicine (Captopril) to help his heart function better and one half of a baby aspirin to thin his blood. He usually takes them without too much wrestling. We think he actually likes Captopril.
- Only a portion of his blood actually flows through his lungs. The rest goes into his right atrium, then across a hole into his left atrium, through his mitral valve into his left ventricle, across a hole into his right ventricle and out through his aorta. For those of you trying to picture this, some of his blood comes into his heart, goes around in a circle passing through more abnormal holes than valves and goes out without being oxygenated.
- Because only a portion of Caleb's blood goes through his lungs, his oxygen saturations are lower than normal. Normal blood is considered around 100% oxygenated. Caleb's runs around 80 to 85% oxygenated.
- Caleb has one more scheduled surgery. This surgery will re-plumb his circulation so all of his blood will pass through his lungs. His oxygen saturations should then climb into the 90%+ range. This surgery is usually performed between 18 months and 5 years of age. We are thinking that unless it is recommended otherwise, we will lean more toward the younger side of things. Of course, there are pros and cons to doing it early, but our hope is that he won't remember anything if we do it while he is still young (and in diapers with pacifiers for comfort and unable to ask why he needs to have surgery).

Monday, June 20, 2011

Sunday, June 19, 2011

On the trampoline at Uncle Chris and Aunt Hallie's

Getting some love from Audraya

Caleb had his pediatrician's appointment this week. He got three shots and is now caught up with his six month vaccines. He was pretty sore and crabby Thursday night and tired on Friday, but by Friday night, he was back to normal.

His weight was 14 pounds, 15 ounces. I guess I should have left the wet diaper on him, then we would have made 15 pounds. The pediatrician said that because Caleb is active and acting normally, he is not worried. We are going to keep feeding him as much as he will eat and will call it good. Luckily, Caleb is not a picky eater. So far, we have not found any foods that he does not like.

Caleb has learned a new trick this week. He can move from his hands and knees and push himself up into a seated position. Now, if we could just teach him to crawl on his hands and knees, not his belly, we would be making some serious progress. He is getting pretty fast on his belly though.

Yesterday morning, I put Caleb in our bed to wake up Phil and Sam (who both had fallen back asleep after the 7:15 am Father's Day festivities). He was trying to crawl up between them, so I picked him up, laid him on the pillow between them, and pulled the blankets up over him. As soon as I got him all tucked in, he pulled the blanket up and started playing peek-a-boo. Phil and I were both surprised that he remembered the game, it has been a while since we have played it with him.

I don't know if it is possible to explain how lucky we are. Caleb is nearly caught up with his development and is very healthy. As far as we can tell, he has suffered no ill effects of being low on oxygen for an entire week or being on and off the ventilator so many times. We have seen no evidence of a stroke (a very common occurrence with these babies). He eats well and has no strange aversions as a result of his surgeries and hospital stays. He is wonderfully happy and lights up when he sees any member of his family. He is the most attentive (to the point of being downright nosy) baby I have ever seen. If Mom or Dad are holding him, he is nearly always happy unless he is hungry or tired. We are so blessed to be where we are right now!

Wednesday, June 15, 2011

Sunday, June 12, 2011

I have to make a correction from one of my previous posts. Caleb has only started army crawling in the past week. Before that, he was moving more like a paralyzed seal. Now we are getting coordinated arm and leg movement, not just arms dragging the legs along. Even though he does not yet crawl on his hands and knees, he is getting quite good at moving around now and can effectively terrorize his brother and sisters. I don't think destroying your siblings stuff is one of the developmental milestones the therapists use in their assessments, but I think it should be!

Caleb is still doing great. He has a doctor's appointment with his pediatrician Thursday for a weight check and his six month vaccines. We are going to try to stuff him with food so we can make 15 pounds.

Caleb is now making more sounds. We have not heard anything resembling Mama or Dada, but he is making vowel and consonant sounds. He does most of his talking with food or toys in his mouth. As far as I can tell, that is the only time he shuts his mouth. The rest of the time, he just leaves it open so the drool can run right out.

Even though this blog is pretty much the same each week right now, I am going to keep writing (even if it is a few days late some weeks!). Because Caleb is our fourth child, there is no way he will get a baby book. Some day, I will print the blog entries out and he will have an epic novel.

The other reason that the blog will continue for a while is that my greatest hope is that there are other heart families that will stumble upon it and find that some babies can thrive after surgery, even if things didn't start out well. I still get excited to see pictures of older heart kids looking healthy and enjoying life. Life can get to a very normal spot and it is great!

Monday, June 13, 2011

Sunday, June 12, 2011

I am running behind (again). I will add a new post tonight.

Sunday, June 5, 2011

Sunday, June 5, 2011

This was Caleb's first piece of U of M clothing. He got it before he was born and it says "I arrived a Wolverines fan!". Pretty fitting!

This week was just as boring as last week. Caleb's fondness for real food is helping him to close in on 15 pounds. We are not there quite yet, but we are close.

Caleb is tipping over more when he sits up. Of course, my first reaction was "Is something going wrong?", but I think that he is just getting cocky. Instead of focusing on staying upright, he is busy looking around and trying to decide where he is going to scoot to next. You can no longer count on him to stay in the same spot for very long. He is officially army crawling, but still has not figured out the knees yet. He is capable of using his legs, so I think it is just a matter of time.

This weekend, Phil took the Big 3 to Illinois for a family get together with his Dougherty aunts, uncles and cousins. I think Caleb really missed his brother and sisters. When they got home today, he was very excited. I think he has got the family thing figured out!

Sunday, May 29, 2011

Sunday, May 29, 2011

Visiting the 4th Grade Travel Fair to See Ella

I feel like a broken record. There are fun baby things to report this week, but no health issues. Phil and I have always been fans of boring, and we are definitely loving this source of boring!

Caleb is scooting all over the place. He has still not figured out the hands/knees form of crawling, but he can get where he wants to go. Today, I found him halfway underneath his bassinet.

This week, Caleb has started playing Peek-a-Boo with us. We put a blanket on his head, we say "Where is Caleb?", he pulls the blanket off, we yell "There he is!" and Caleb laughs. He has now figured out that if he pulls the blanket back up over his face, he can control the game. The entire family finds this highly amusing (I told you we thrive on boring!).

Caleb has also decided that he likes real food much more than baby food. He now sits in his high chair and feeds himself little bits of whatever we are eating at meals. He is keeping up pretty well for someone without teeth!

Monday, May 23, 2011

Sunday, May 22, 2011

This is what you look like after an exciting Sunday of playing with your entire family

Caleb has decided that his biggest motivation for moving on his own is to mess with his brother and sister's stuff. He particularly loves paper and Uno cards. We have not yet heard "Caleb took my ..." but I am guessing that it is not far off. That is how well he is doing.

We are working on getting him to stay up on his hands and knees and getting him to roll to the left. If we put something on this left side, he rolls to his right and scootches to get it. He gets points for ingenuity, but his cooperation is not too strong.

Caleb is loving solid foods. I have been giving him the Gerber puffs - little snacks that he can feed himself that dissolve very quickly. He now recongnizes the container and is always ready to eat whenever you put him in his high chair.

On Monday, I took Caleb to the pediatrician for an ear infection (his second). He was pretty fussy and kept grabbing at his left ear. He is on amoxicillin and is feeling much better. He had a nasty runny nose last Monday through Wednesday, but is now back to feeling good.

Caleb went to the pediatrician for his 9 month check on Wednesday. As hard as it is to believe, Caleb is now 9 months old. The doctor was happy with how well he is doing. His head circumference is at the 70% percentile, his length is at the 25% percentile and his weight is still not on the chart. The pediatrician is not worried though. We will take Caleb back in a month for another weight check and for another round of vaccines. We decided to postpone his vaccinations so Caleb could get over his cold and ear infection, instead of adding to his misery.

On Saturday, I took Caleb shopping with me to Costco. He is very outgoing, so he smiles at everyone we see. It was like he was running for office - we had a ball. When we got to the check out, the store was selling paper balloons to raise money for the DeVos Children's Hospital. Last year, about this time, I bought four balloons with tears in my eyes, hoping that I would be able to do it again when I had four healthy children. On Saturday, I got to do it (again with tears in my eyes, but with a big smile on my face). Each day, I think about how lucky we are to still have Caleb, but comparing where we were last year at this time and where we are now really put things into perspective!

Sunday, May 15, 2011

Sunday, May 15, 2011

Definitely not a poster boy for childhood obesity!

Moving from sitting to ready to crawl

This week was another good week. Caleb is learning new tricks everyday. This week, he started rolling over from his back to his tummy so he can get to toys on the floor. One night, he was rolling back and forth from back to tummy on Sam's bed, pausing between rolls waiting for us to cheer for him. He is quite the ham! He has also learned how to inch along on his belly, play peek-a-boo and he is enjoying solid foods more and more each day. We are amazed at the progress that he is making - he is getting pretty close to being caught up!

Here is my first attempt at uploading video. It's very short, but proves he can roll like a champ!

Sunday, May 8, 2011

Sunday, May 8, 2011

Happy Mother's Day!

We have decided that four open heart surgeries are good preparation for being a little brother. If you can survive that, you can survive being drug along to every Girl Scout meeting, baseball practice and school event that your older siblings participate in. This picture is Caleb at Sam's first baseball practice being held by Maeve (still wearing a snowsuit in May).

We had a great week last week. Caleb is still doing great with the bottle and has bounced back well from the stomach flu. He has a runny nose and a little cough, but it is not slowing him down any.

Caleb is making more progress on his gross motor skills. He can now go from sitting up and move down to his belly and is starting to inch along the floor. He is not crawling yet, but he has realized that he can move to get things that are out of his reach.

He is also making progress eating solid foods. He does quite well with cereal and baby food and likes to feed himself Cheerios. He still doesn't have any teeth and sometimes he gags on the Cheerios, but he is determined that he needs to feed himself.

Caleb had his cardiologist appointment on Wednesday. The cardiologist was very happy with what he saw. Caleb's oxygen saturations were in the upper 80's and low 90's, his heart rate was good and his EKG looked like it was supposed to. He did not have an echocardiogram, but his heart sounded like it should.

Now we have to work on getting Caleb to put on some weight. His official weight is just shy of 14 pounds. Considering that we was nearly 8 pounds when he was born and he is nearly 9 months old, he isn't really packing on the pounds. The cardiologist said that we will wait him out a little while because he doesn't want to use the NG tube unless we absolutely have to. Phil and I couldn't agree more!

Caleb was also taken off his last diuretic. Now he is only on Zantac (which we may be able to eliminate soon), Captopril (to make it easier for his heart to pump and help keep his blood pressure lower) and 1/2 of a baby aspirin a day (to help eliminate blood clots). This level of medication is not hard to deal with and Caleb doesn't mind it most of the time.

Overall, things are very normal now and we are loving it!

Monday, May 2, 2011

Sunday, May 1, 2011

Caleb is not crawling yet, but he loves to stand!

Caleb made it through his first bout of stomach flu last week. He was sick Thursday and Friday, but bounced back like a pro on Saturday. He ate very little on the days he was sick (like all of the rest of us that had it earlier in the week), but he made up for it on Saturday. He is still doing great with the bottle and we still haven't had to put the tube back in! His weight never has varied more than a few ounces.

Caleb's occupational therapist assessed him on Tuesday and he is doing really well. It seemed to us like he has been catching up and now we have proof. He is still behind on gross motor skills, but only by about 1.5 months. He still is unable to go from a sitting position to crawling. He is also behind on his oral skills. He makes lots of noise, but still doesn't make any real consonant sounds. Overall, she is very happy with his progress.

Caleb has a cardiologist appointment on Wednesday, so we will get some feedback on how his heart is doing.

This week, we are going to work on solid foods now that he is doing so well with the bottle. Caleb is very interested in what we eat, but not as keen on baby food. We haven't been spending as much time on the baby food and cereal as we should because of our concentration on the bottle feeding. Now that we have the bottle thing going, we are going to need to start on a cup soon!

My plan is to add a new photo later this morning if Caleb cooperates, so if you are an early reader, I apologize. This weekend was crazy busy and I forgot to get a photo. Caleb did go to his first garage sale, White Cap's game and walked in his first Crop Walk. A photo mom would have taken a picture of at least one of these events, but I forgot!

Sunday, April 24, 2011

Sunday, April 24, 2011

The gang dressed in their new Easter clothes

I wanted to see if Caleb could stand holding onto something. Come to find out, he can, but not quite long enough for a photographically challened Mom to get a good picture!

Looking pretty suave with the pre-church drool

Caleb still hates baths!

Caleb has finished an entire bottle in one feeding! I have been waiting about 5 1/2 months to put that on the blog. Not only has he done it once, he did it four times today.

Bottle Boot Camp has been a huge success! As I mentioned last week, Caleb was increasing the volume that he was taking by mouth daily. By Thursday, we stopped putting the NG tube back in at night. He has not had the tube since then! Today, he took over 75% of the volume he is supposed to be taking. It seems so amazing to just need a bottle and milk, not the bottle supplies, the syringes, the feeding set, extra tape, etc. We would never have guessed that it would go this well.

Caleb has not lost any measurable weight. His weight fluctuates by four or five ounces, but a moderately wet diaper weighs four ounces, so that seems pretty reasonable.

We have also found out that Caleb would rather eat a lot during the day and sleep at night. None of our other kids figured that out this soon! Last night, he went to bed at 11:00 pm and woke up at 7:30 am.

As you may guess, we couldn't be happier! Caleb now looks and eats like a regular baby and his cheeks are healing pretty quickly. Now we just need to convince him that Mom and Dad aren't the only people that can hold him!

One other note, Caleb is now eight months old. Because of all the weird milestones and little segments of his life - 72 days in the hospital, 2 1/2 months waiting for the second surgery, 10 days in the hospital, and settling into normal life - it doesn't seem nearly that long. I now need to make an effort to remember those rough early weeks to remember how far we've come. We are so lucky!

Monday, April 18, 2011

Sunday, April 17, 2011

Teething on the Table

First trip to the Ice Cream Caboose

We are on our way with NG tube weaning. The therapist came on Tuesday and agreed that it doesn't look like Caleb was quitting with the bottle because he was tired. On Wednesday afternoon, I called the pediatrician and got his go ahead to try our weaning plan. He gave us the ok to let Caleb lose up to 1.25 pounds in our endeavor.

Based on talking to other parents when we were in Ann Arbor, doing research on the internet and listening to our parent instincts, we decided to take the NG tube out each day and give Caleb only bottles. This allows him to get hungry and tell us when he wants to eat. With the tube out, he can feel what it is like to eat normally. We bought a baby scale so we can track his weight each day and identify problems early on.

We pulled the tube on Thursday and things went well. He drank about a third of his normal volume of milk, but was not fussy. We left the tube out Thursday night, but we noticed fewer wet diapers on Friday, so for now, we are putting the tube back at night. This allows us to give him three full feedings each day, so the change is not too abrupt. As of Sunday, he has not lost any weight.

We have noticed an increase in the volume that he is taking from the bottle. Right now, he is taking around half of what he should be. He is also doing much better taking his medications orally. If he can hold the syringe, he will drink the medicine.

Feeding was our main focus last week, but Caleb did hit another milestone. On Tuesday, he got to go to the Ice Cream Caboose for the first time. We did find out that if the whole bottle thing doesn't work out, we could add some sugar, freeze the milk and be in business. He loved the ice cream and I had a hard time getting my cone back.

Phil and I are feeling much more positive this week. We were getting nervous with the feeding issues and were worried that we might not get Caleb to eat from a bottle (or from a cup in the future for that matter). Hopefully, we can make some progress this week and be on our way to eliminating the tube entirely. Caleb's cheeks are suffering from the tape, but hopefully that will be short-lived.

Monday, April 11, 2011

Sunday, April 10, 2011

This week has been pretty uneventful. Caleb did not have any appointments and did not meet with his therapist because of Spring Break. He did spend his first night in a hotel on Thursday. We celebrated Spring Break by going to a hotel about 20 minutes away so the Big Three could go swimming. We realized that even though the rest of us had spent a lot of time in hotels since he has been born, he has never stayed in a hotel.

We are working on a plan to try to speed up our progress with the bottle. We are struggling with the NG tube during the day. Caleb is either gagging on it or pulling it out. The red mark on his cheek in the picture is where the tape pulled some of his skin off. Now that he is going more places, we are catching the tube on everything, so if he is not pulling it out, we are.

Caleb has still been taking 20 to 40 mL at a feeding and has not really made much forward progress recently. We think that he is strong enough to finish a bottle, but he seems to lose interest when he has had enough milk to curb his hunger. Unfortunately, this happens about a third of the way through the bottle. Our plan is to talk to the therapist and his doctors and see what options we have for pushing him a little harder.

Caleb is sitting up pretty well on his own, but shows no interest in crawling yet. He has found a way to tuck and roll when he does tip over, so he hasn't bonked his head on the floor nearly as much!

The last two babies that we know that will have the same surgeries as Caleb both had their second stage surgeries last week. Maggie and Ted both had successful surgeries and are recovering in the hospital.

Monday, April 4, 2011

Sunday, April 3, 2011

Caleb was feeling much better last week. His nose was still running, but he was much happier and slept much better.

He is really getting the hang of sitting up on his own. He still tips over when he gets distracted, but he can do it for a couple of minutes now.

He is rolling over more and more, but still only from his tummy to his back. He doesn't see any need to be on his stomach, so why would he roll onto it? He can support his chest now with his arms extended and can squirm to get a toy just out of his reach, but he isn't showing signs of crawling any time soon.

Caleb's bottle skills last week were consistently mediocre. He usually takes between 20 mL and 40 mL now, but never took more than that at a feeding. We are still hoping that he will be able to get rid of the feeding tube. We are trying to push him a little harder, pushing the bottle a little more and holding off on the feeding tube. He still doesn't get very hungry, so if we just waited until he was really hungry and ready to eat, we would be behind a couple of feedings a day. He still needs all the calories he can get, so we are trying to find the right balance of letting him eat when hungry and getting him all of the milk he needs.

We are finally starting to get Caleb into a normal routine. We have adjusted his feeding schedule so I can get to work earlier. We are also starting to get his naps on a better schedule. One of these days, we will get the hang of this!

Monday, March 28, 2011

Sunday, March 28, 2011

I can't wait for real spring weather. Caleb has another cold and was a drippy, crabby mess last week. He didn't drink much of anything from the bottle until Saturday and is still throwing up a decent amount.

Hopefully, he will start recovering from the cold this week and can get back to forward progress. He is getting better at sitting up on his own though and did drink better from a bottle yesterday and today.

This week marks the one year anniversary of our heart journey and the one year mark of the blog. What a year it has been!

Monday, March 21, 2011

Monday, March 21, 2011

Caleb always looks like he is surprised by something (and is always drooling)

Caleb sitting up on his own and playing with his tube

This week has been full of good milestones.

Caleb is now seven months old and things are pretty normal. Phil and I were discussing that back in September, we never thought we would ever get to normal.

On Tuesday, Ella was playing with Caleb on our bed and he rolled over from his belly to his back twice. He can only do it on a soft surface because it is a violent process. He throws himself down as he pushes off. It isn't pretty, but it is effective. He was nice enough to do it for Phil and I later in the evening.

Several times this week, he has finished half of his bottle. He nearly always drinks some from the bottle now and is steadily improving. On Wednesday, he pulled out his NG tube as soon as we got to the office. We made it through both feedings and he finished nearly all of his milk - it just required feeding him hourly. Because it still takes a lot out of him and he still needs all the calories he can get, we are not pushing him that hard. It is easier to be patient when we can see the progress.

On Sunday, the kids thought he needed to wear shoes to church. When we sat him up with the shoes on, it gave him a sturdier base and he was able to sit up on his own for a little while. We found out it also works without shoes if we put him in the right position.

Today, Caleb had a doctor's appointment with the pediatrician. He had his six month check up at seven months of age and got his four month vaccines. He weighed 13 pounds, 12 ounces which is what a statistically average three month old would weigh. How's that for some confusing math? The pediatrician was very happy with his growth and his overall physical condition.