I’ll never forget the look on the nurse’s face the day I was told I could bring Cayden some clothes to wear and I showed up with a wardrobe. She was a bit shocked, but then helped me accommodate his new clothes by finding him a little drawer set.

As you can imagine, when clothes are one of the few things you can provide for your baby, you go a little nuts and buy a few too many. How many? Fifty-seven to be exact. Yep, 57 little preemie outfits that he wore. This doesn’t count a few things he didn’t wear and the micro-preemie clothes we bought but he was unable to wear.

I knew I wanted to keep all of his preemie things; they are full of memories, but what good do they do sitting in a space bag besides not taking up too much space? So, I got this grand idea that I would make Cayden a keepsake quilt from his preemie clothes.

Yes, me. Me, the one who has self taught all sewing skills to herself and knows nothing about quilting. A little ambitious. Okay, a lot.

Thank you Google for putting me in touch with great information, forums, local quilt shops, and blogs chalk full of information! I bought a few items and got out the little outfits and put them back up again. I couldn’t cut up his outfits. Then I tried again and before I knew it, I was a cutting machine. It was liberating in a way I can’t describe to cut up the outfits. I cut out as many 4×4 squares as I could from each outfit (typically one) and then put the appliques and special sayings to the side. I saved his first outfit.

How many squares do you think I needed to make a small quilt? I’ll save you the trouble. I needed 160 squares. 160 squares?? You don’t have to be a math major to realize that one square from each outfit is only going to get me 57 squares. Yep, just a few shy of 160. I’m not a magician, so I had to come up with a plan.

I thought about it and decided that I would cut up the receiving blankets, and cloth newborn and preemie hats he wore, as well as, one of his snugglies he slept on in NICU. I added a few squares of coordinating colors to balance the colors and I had just enough squares. Whew!

Then came the piecing. Nate helped me balance a few squares and get everything lined up just right. I cheated and used quilters grid fusible interfacing. I ironed those bad boy squares on in rows. Sixteen rows of ten squares to be exact. Our little folding tables are still a bit miffed that I ironed on them, as they continue to be a bit “puffed” up on the edges.

The interfacing stabilized the knits and made sewing much easier. I stitched seams and screwed that up, and had to adjust for my mistakes. Once that was done, the internet advised that all I had to do was baste the quilt, quilt it and then bind it. Uhm, what? It was like a foreign language. Thankfully, quilters love to blog about quilting and I learned a bit of the language. I figured I’d be done in a week. No problem! Sure, Tami.

Foolish newbie.

What a cruel joke it is to make so many fabulous fabrics and expect one person to pick one to be the back of the quilt. Let’s not even talk about binding and quilting options. What’s a girl to do? Well, this one grabbed her co-worker/friend Kristen, who knows nothing about sewing, and took her to Hobby Lobby. After wandering through the fabric and questioning the fabric lady, we came to an agreement on backing and binding and purchases were made.

Those that know me know that I’m a bit indecisive at times and am prone to change my mind a ridiculous amount of times before I settle on just the RIGHT thing. Apparently, that carries over to sewing and quilting in my little world. I finally decided that I wanted color on the back. Why not quilt the color there? Duh! My hand dandy walking foot on my sewing machine would be perfect. All I had to do was switch threads as needed. Simple, right? Wrong, dead wrong. I made my little quilt sandwich, as advised, and quilted until I got it just right, but I couldn’t make it happen on THE quilt.

Then a brilliant idea hit me – hand quilting! Why didn’t I try that before? We went on vacation and I bothered everyone I could about his quilt and asked their opinions on my new idea. Still didn’t know what I wanted to do, but I gave it a shot.Yep, that didn’t work out well either.

Once we got home, I was determined to finish this quilt. I suckered this lovely lady into helping me find binding and listening to my quilting ideas at the fabric store and found the perfect binding. I got home and set out to bind this quilt via online tutorials. I messed that up and had to start over.

First attempt

Six hours of hand stitching the binding to the back and a bit of sleep, I headed out to Hobby Lobby with Cayden in tow to get matching embroidery floss to hand tie the quilt. Mistake 5,000. Cayden had a meltdown in the store. It was very unlike him. He threw goldfish all over the floor, chewed and unchewed. (Yes, Mom, I picked it all up.) I offered to buy him yarn to no avail. As if that wasn’t enough, he tried to snatch some ladies purse as she shopped for yarn in front of our cart! He screamed like I was hurting him. I swear I wasn’t. Then we started getting sympathy looks, so I had to leave. We got to the car and he was fine. Figures.

It took me another week to hand tie and match the gazillion blues, but I finished! It was worth ALL of it. I love it! I can look at his quilt and remember him in the outfit and even recall emotions I was feeling at the time, more often than not. I hope Cayden will love it as much as I do and know that even though it isn’t perfect, it was made with pure love. I hope it will be a reminder to Cayden of just how far he has come and the blessing that he is.

Tami

P.S. I’ll get some pictures of Cayden with his new quilt now that it has been washed. Stay tuned!

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While Cayden was in NICU, we got to know many of the parents of the other babies. It’s kind of like a club you never thought you would belong to. Every NICU parent understands the roller coaster ride and you find that friendships naturally form as you support each other on the ride up, the drops, and the loops.

One such friend is Kristy. She is Zach’s mom and a fabulous friend. We talked daily and I sure have missed her since we have been home. They live quite a way out and periodically drive in for doctor appointments for Zach. I’ve had the privilege of meeting Zach, briefly, outside of NICU. However, Cayden and Zach, NICU buddies, haven’t met each other and Kristy hasn’t met Cayden.

So, Sunday evening, we met up at Pappa’s BBQ near their hotel by the hospital for dinner and laughs with Kristy, Zach, and Zach’s grandma. Zach is one cute little guy, full of personality, just like his mama! He has a grin that will melt your heart. Zach had the cutest squeaker shoes that squeaked when he walked. We ate dinner and it was really cute watching the boys try to do something the other was doing. For example, Cayden had cheerios and Zach wanted his puffs. Zach had his drink and Cayden fussed for his.

After dinner, we sat around and talked and laughed. Kristy and I put the boys in our laps and let them see each other close up. At first, they stared at each other, then Zach pointed at Cayden. He was using his index finger to touch and jabbed Cayden right in the eye! Kristy apologized, despite me telling her that it wasn’t necessary. Of course, you are probably thinking that Cayden screamed…nope, not our kid. He rubbed his eye, looked at Zach and smiled!

Click the picture to go to the rest of the evening photos.

I’d like to say that they just jabbered to each other, and hit it off like long lost buddies, but they didn’t. It was late in the evening and they were both tired. So, next time, we’ll head out towards Kristy and have a real middle of the day play date! Can’t wait!

Tami

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Our baby is growing up so fast! He is so independent and head strong. Always a joy to have in our lives and full of surprises! Here are some of the new things Cayden is doing:

-clapping (started during vacation)
-waving (started before vacation)
-using his walkers, and any toy he can push, more frequently to get around the room
-eating almost all table foods
-putting together his legos
-beginning to sort things
-attempting to do wooden puzzles
-stacking blocks, stacking rings, and toys
-shares food with you (even tries to soften it up first and then give it to you-ick!)
-showing interest in using pens, pencils, crayons
-finally enjoys finger painting
-likes to try to take lids off things and put them back on
-loves to put things in containers and take them out (we lose lots of pacis this way)
-is beginning to talk a bit: dada, me (mommy), uhm hmmm, mmm, and we swear he is saying “I did it!”
-is extremely brave in the big swimming pool and wants to swim desperately
-has five teeth working their way through
-crawls and cruises at lightning speed
-has learned to hold his sippy cup and drink from it while sitting straight up
-can stand unassisted, but refuses to
-highly enjoys plaiyng peek-a-boo and will even put your hands back over your eyes for you!
-still loves his books and playing with his flash cards

Cayden is constantly on the go! He recently was discharged from physical therapy, as all that can be done for him has been done. He is a careful baby and will walk when he is ready. Of course, if there are any concerns, we can pick PT back up. Occupational therapy started just this past week and we think it’s going to be great for Cayden. Now that he is clapping and waving, we are hoping to teach him some very basic baby signs to help him communicate more. He will have his speech evaluation in July.

He saw his GI/nutritional doctor, Dr. K, on the 29th. He was 16.3 pounds and he has grown in height. I forgot the actual inches, as I was focused on his weight. He has gained about 510 grams since his visit in March. He is growing well in height, but we are starting to lose ground with his weight.

It seems that his body has compensated for losing the part of his bowel that he lost during NICU, as he isn’t showing signs of an absorption issue. Many times, Cayden doesn’t “ask” for food – we have to offer it to him and it’s a toss up on whether or not he will take the food. Often when he is really screaming for food, he doesn’t eat much once he gets to eat.

So, the new plan is to try Kid Essentials, which has somewhere in the neighborhood of 355 calories per 8oz. We will replace at least one can of Pediasure a day with that if he can tolerate it. It’s really rich and can either make him too full to eat more or cause diarrhea. We are going to use the Duocal powder, 40 something calories per tablespoon, and sprinkle it on his food. He’s had this powder before when he was on formula as an additive. We are to add more butter to his foods and give him more pasta and rice. Instead of meat, we are to give him ice cream, as it’s better balanced with protein and carbs. Basically, we need to add 200 calories more to his diet a day than he gets now, which is hard for a little guy. The more weight he puts on, the stronger he will get, which in turn, affects his development. I’ll update on how he does with the new things later this week!

Tami

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Cayden went on his very first road trip across the country for our first family vacation! We set out for Bay St. Louis, MS to visit my Great Aunt Avis, Cayden’s Great Great Aunt. We stayed the night with her and Cayden sure entertained her and our cousin Eddie. He slept in his pack n play for the first time for a few short hours and then he ended up in bed with us.

The next morning we packed up and headed for Birmingham, AL where we visited with Nate’s grandparents and other family. Cayden met his Great Grandparents, his Great Aunt Becky, Great Uncle Larry, his cousins Amanda, Tyler, Valin, Elliott, his Aunt Anneke, and his Grandpappy, and some wonderful family friends for the first time. He doesn’t remember, but he met his Mimi when he was in NICU. He was quite the little entertainer while he was there, keeping everyone on his toes and just being Cayden.

He played with his cousin Elliott, who is 9 months old. He did a fairly good job, considering he hardly ever plays with other kids. His cousin, Valin, did an excellent job reading a book to Cayden. Thankfully, Cayden paid attention to the story. It was so cute watching all of them play together. In true Cayden fashion, he took his cousin Amanda’s phone and managed to start a text message! Cayden just adored his cousin Tyler, even more so, I’m sure, when Tyler protested about the audience during Cayden’s bath time…hehe! We went to dinner at the King’s, some of his biggest supporters, where he ate some YUMMY food and received lots of loving while he was there.

After several fun filled days in Birmingham, we headed out for Ohio. We stopped for the night in White House, TN where Cayden stayed in his first hotel. The closet had mirrored doors and he couldn’t get enough of seeing himself in those mirrors. He’d crawl all over the place and end up back in front of them smiling and giggling. The next morning we ate breakfast at Cracker Barrel and then hit the road again. We got to Ohio late that evening, as we hit some nasty rain and some heavy traffic.

While we were in Ohio, Cayden got to see his Gamma and Aunt Carly (he met her while he was in NICU) again, and he met his Big Pop for the first time. He took no time in wrapping them around his little finger! Aunt Carly just graduated high school, so Gamma and Big Pop threw a party for her. Cayden was a guest of honor, as so many friends and family had yet to meet him too. During his visit, he met Great Grandma and Grandpa Hall, Great Grandma Sablotny, multiple cousins and aunts, and many friends. He even got to meet one of his daddy’s best friends, Brian and Brian’s family.

While he was in Ohio, he experienced many firsts: he played in a kiddie pool, went to the Zoo, started clapping, ate a Popsicle, and ate a chicken wing! We also took him to Preston’s Hope, an amazing playground that is geared for children with special needs. He had such a great time playing, and even made a new friend. He thought Gamma’s dogs were quite hilarious and wanted to badly to be able to chase them around.

After several days, we started our trek home. We made two stops, one in TN and another in MS. We did a little geocaching while we were on vacation in every state we passed through. Tons of pictures were taken everywhere we went. We had such a great time and are so thankful that Cayden was finally big enough and well enough to travel to meet everyone. He was a fabulous little travelin’ baby, and hopefully, we’ll be able to see everyone again soon!

Click the picture to see the rest of the vacation pictures!

Tami

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Nate writes:

Well, we know Cayden has needed one for quite a while now, but sadly his hair on the sides of his head was shaved when he was in the NICU. If you remember, they had to put 2 IV’s in each side of his head. So, technically when they shaved the sides of his head to put the IV’s in, that was actually his first haircut; however, we didn’t get to see it, participate, or even get some of the hair. Well this time was different.

We went to Ruby’s Barber shop located at 502 Runneberg, Crosby, TX. I have been going to Ruby’s since I first moved to Texas. They were originally located in the same strip center as Arlen’s grocery store, but recently got their own place.

Cayden was a little leery, at first, of all the new people talking and the noises from the clippers. The noise from the air hose scared Cayden every time they used it to blow hair off a customer, the chairs, or their tools and he would scream.

After a brief wait, it was Cayden’s turn. Tami went and sat in the barber chair with Cayden in her lap.

Cayden was not to sure what to think and was looking all over the place. *There is a lot to look at in there.

When Lisa started talking to Cayden and put the cape on him, he started to smile. He was doing fine until she misted his hair with the water bottle and then he looked at her like she had lost her mind.

Cayden did really well and when Lisa was done she gave Cayden a Fist Haircut Certificate.

You can see more of Cayden’s haircut by going HERE

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Nate writes:

Well, believe it or not, 1 year ago today Cayden was brought home under extremely stressful conditions. If you remember, Cayden was on Oxygen, had a NG Feeding tube, and was attached to a Apnea monitor 24 hours a day. He was on several medications and saw a different specialist weekly. It’s a miracle that Cayden is where he is now, from where he started.

Most people that know me, know that I’m not a very religious guy. We don’t attend church regularly and we don’t pray at the dinner table. But, I do believe in a higher power and I do believe in the power of prayer, even if I didn’t there is no denying that Cayden is a direct result in the power of prayer.

Me, personally, I don’t believe in praying for every little thing that comes my way. I feel that God is in control of things and things are going to go the way he wants, whether I ask for it or not. I don’t bog down the system, asking to win the lottery or to drive safely from point A to point B.

One thing that caused me to pray everyday was the birth of Cayden. The first time I really remember praying for him, was when Tami was asleep in the room and I went to the NICU, the night Cayden was born. I don’t remember going there, I just found myself about 6 feet from his bed, just staring at him. Everything around me was out of focus and things seemed to be moving really slow.

It’s then that I found myself begin to cry and ask God to be with Cayden.

As you know, when Tami left the hospital and had about two weeks to recover, we both went back to work. I find that my personal time is when I’m driving to or from work. I have driven the route so much that my mind is on auto pilot and that’s when I start to think about things. I took that time every day to say a prayer for Cayden and all the other babies that were currently in the NICU.

After a while, I felt like I was running out of things to pray for and I, myself was just bogging down the system.

I got home that morning, and was working on a post for this site and looking for music to use and I found this song called “He’s My Son” by Mark Schultz. I listened to the song and was immediately captivated. I felt like, he is singing about Cayden and saying all the things I wanted to say in a prayer.

I quickly downloaded the song and put it on my Ipod. I then would sing the song on the way to work and on the way back home, everyday.(nowhere near as good as Mark)

I never told Tami or anyone else about this song. This was my special song for my son. I feel it is time to share this with others. I hope you enjoy it as much as I do.

Sorry for the need to download the video. Youtube would not save it. Click on the link below and click either “open in browser” or “save file”

Cayden Home a year video

I hope you enjoyed the video. You can hear more from Mark Schultz by going to Mark Schultz Music

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“Smile” by Uncle Kracker music video was playing just a bit ago and the phrase “you make me smile” made me think of Cayden. That little boy can sure bring a smile to our faces, even when we are having terrible days. He is such a hoot!

I don’t even know where to start, as so much has happened since I blogged last. I know, I know. Uhm, let’s see. On March 4th Cayden turned 1 year old, adjusted! With that said, get your favorite snack and something to drink, as this is one LONG post. =)

All stuff medical and therapy related:

Dr. Coats: Dr. Coats told Nate that the best thing would be for Cayden to be a little bit far sighted, and that is normal in babies, but that due to the ROP issues he had, there may be a need to correct his vision. The exam revealed that Cayden’s vision is PERFECT, okay, well, practically perfect!! He is a tiny bit far sighted and that is just fine with us!

Dr. K: It was time for our visit to check on GI and nutrition issues. Cayden still has a very difficult time gaining weight and we aren’t sure why, other than all the preemie and feeding issues. Dr. K switched Cayden to Pediasure and took him off his formula. No additives either. It’s a guaranteed 30 calorie per ounce drink and more age appropriate for him than formula. He upped Cayden’s reflux medicines to make sure that the reflux wasn’t an issue with him eating or weight gain, as he is still spitting up at times. He was about 15lbs 3oz. He showed me Cayden’s growth charts and, well, Cayden isn’t on the charts for his actual or adjusted age. Good news is that he is growing, just at an incredibly slow rate. I promised that we were feeding him anytime that he looked like he could be hungry. Dr. K is so great with Cayden and was very encouraging to us about his growth. Currently, we are keeping Dr. K updated on his weight gain by weighing him twice a week (if we don’t forget the late week weigh-in). We’ll see him again in June.

Dr. Cleary: Cayden had his follow-up audiology appointment since he didn’t cooperate last time. It was my first time to meet Dr. C and she was wonderful with Cayden! He cooperated this time – yay! Like we already knew, he can hear. He is just using selective hearing practices when he ignores us. I wasn’t aware that infants/toddlers learned that technique that early! Guess we are in for some trouble when he gets to be a teenager. He’ll go back in six months to check again, as it isn’t uncommon for preemies that were on a vent to have some hearing loss.

Dr. P: Cayden was supposed to go see her for a weight check the day he saw Dr. K, but since he just had his weight checked we scheduled it for another day. I did talk to Dr. P later that evening for about 45 minutes on the phone about his weight and feeding issues. I asked her if it was normal for him to have this problem and she told me that due to his low birth weight, how sick he was, and his feeding problems, that she isn’t surprised. Usually, kids will catch up, but obviously, we will just have to keep an eye on his weight and make sure he isn’t losing. We talked about bringing him in for a weight check and she told me to just call her with his weight, as there had been a few more positive cases of the flu and she didn’t want him in the office to be exposed to that. She is so wonderful and I am super thankful we have a pediatrician like her for Cayden.

He had his appointment for 15 months with her a few weeks after the phone call. He received a few of his vaccinations, but we chose to continue to delay his MMR until he is 2. Dr. P advised caution when traveling, as there have been some measles and mumps outbreaks in other states. She suggested that we take him down to one nap a day and offer him a little bit of cereal or oatmeal in his last sippy of the night to help him sleep better at night. He has three teeth erupting too – poor guy! At his next appointment, Dr. P looks for him to have 4 to 6 words that he uses regularly. He was 15lbs 10oz and 26.5 inches long at that appointment.

Dr. R : He had a great appointment with pulmonology. His lungs are “clear as a bell” and, as we knew, his echo results were great. He’ll have an echo again in six months and then another visit with Dr. R. It probably sounds crazy, but every time that someone listens to his lungs, I’m so worried they are going to hear something they shouldn’t. So, needless to say, it’s always a relief to hear that his lungs sound good.

Development/Therapy

Physical Therapy: The focus in physical therapy is walking. He is progressing in his own way towards that goal. He can now push his walker across the room and when he does this, his little legs are closer together. He cruises like a pro and is transitioning more from toy to toy. When they are farther than he’d like, he sits down and crawls to the one he wants. He hasn’t gotten brave enough to let go and move yet, but we are seeing signs that it could be close. If he doesn’t realize he is standing by himself, then he’s fine, but once he does, he sits down…hehe!

At our request, a comprehensive developmental evaluation and an OT evaluation were completed on Cayden in March.

Occupational Therapy: Cayden qualifies for OT in a few areas, mainly with feeding. He is way behind in his skills in that area. At the time of the evaluation, Cayden wouldn’t even take a puff or yogurt melt, and if we got them in his mouth, he’d gag and throw up if he couldn’t spit it out quick enough. It was that way with anything that was super thick or textured like that. He has low tone in his mouth, which explains the excess drool, etc. We were given multiple tips to help him with his sensory issues in feeding and other areas and we have worked a lot with him (letting him play with his food, play dough, and finger paints). He still has a way to go, but he’ll eat puffs and some table foods now!!! He LOVES cheese like his mama. Just tonight he ate bits of a grilled cheese sandwich! However, he won’t eat many chunky foods and even some really thick foods. We are taking his progression slowly and letting him build his skills. He also drinks completely out of sippy cups now, even though he can’t hold his cup to drink while sitting completely upright. He chews on straws, so that is a work in progress. He is on the waiting list for OT with ECI currently.

Comp Eval Results:
Cognition/Receptive Lang – 13 months
Expressive Language – 11 months
Gross Motor – 9 months
Fine Motor – 12 months
Social/Emotional – 13 months
Self-Help – 7 months

As you can see, he has multiple areas that he has to catch up in. ECI does NOT adjust once a child turns one. He was 14 months actual and 12 months adjusted when it was completed. Based on his adjusted age, which is what his pediatrician still uses, he isn’t doing terrible and is actually ahead in a few areas and on target in another. Nate and I firmly believe that Cayden KNOWS what he wants to do, he is just having a difficult time making that little body of his do what he wants. Cayden refuses to wave, clap, or point…lol, but he pushes toys, throws things, loves to play with the water, and a multitude of other developmentally appropriate activities. Some of his numbers are lower because he hasn’t been exposed to a few things, like writing with a pen or crayon, etc. We are working on exposing him to more activities with strict supervision, as most things go straight into his mouth due to those three emerging teeth. Nonetheless, we are SUPER proud of our little guy on how far he has come. For a little one that had bilateral Grade III IVHs and was/is at high risk for a ridiculous amount of things, he’s doing freaking fabulous!

Speech: He still isn’t speaking many words. We know he can say “dada” and a while back he did say “mama”. He says “meeee” and we think it means mommy, but we aren’t sure. He still babbles and makes plenty of new sounds all the time. He may be saying “tat” for that and “ma” for more. It’s not often and we are probably stretching, but are looking for any signs of speech. Nothing is consistent at this time, so we expect him to have a speech eval soon and start work on his speech.

Simply Cayden

Like I said before, that child is a hoot! His smile lights up a room and makes it incredibly hard to be upset with him for any length of time, even when he is finding a way to get into something. He is forever taking things out of one bucket and putting them into another one. His books still rank as one of his favorite “toys”. If you sit get a book out to read to him, he pays attention to you reading it and helps turn the pages. He has a few toys that have ramps on them and I’ve seen him put everything from a stuffed toy to his pacifier down them. He is so curious and loves seeing how things work. His little personality continues to shine.

If something catches his attention and he likes it, he laughs and giggles, otherwise, he shows absolutely no attention to things he has no interest in. He is very particular about what he does or doesn’t want. He has been known to take his pacifier out of his mouth and THROW it down when he is upset because you told him “no”. Do I think this is a precursor to larger more dramatic tantrums…lol, yes. I can’t help but giggle to myself when he does it, because it’s too darned cute. He is such a happy baby, I mean, toddler (how did THAT happen??). Some days he is a snuggle bug and others Mr. Independent. He is very much a mama’s boy lately.

He loves to eat off our plate and since he doesn’t eat and can’t have everything, so we put things he can have on there and pretend it’s what we are eating. It had been working until the other night and he figured out what we were doing and refused to eat his broccoli and carrots! Stinker *shaking head*

We recently were awarded the “Bad Parent of the Year” award. Oh, we know we should hang our heads in shame, but all we can do is laugh….

So, we were getting ready to pack up and head out for walking shoes for March for Babies last Saturday (MFB post coming later). Nate walked out of the living room leaving the baby gate open and Cayden crawled after him. I looked over and didn’t see him and figured Nate picked him up. Shortly after, I heard the little slap slap of hands on our tile floor and realized Cayden was crawling into the kitchen. He thinks it’s a world of fun to crawl from the dining room to the kitchen and back around. I quickly rounded the corner and found Cayden with his hand in the dog food bowl. Yep, his little hand FULL of dog food. I grabbed him and put the food back in the bowl, explaining that wasn’t his food and that Sydney and Leo would be upset if he ate it. Nate came in the kitchen right as I was talking to him and we started laughing as I told him what he was doing. Nate asked if he got any in his mouth and I didn’t think so, as I didn’t see him put any in and I had just picked him up. About that time, Nate sees a speck of dog food on his little lip and we realize that our sneaky little boy indeed managed to get some food in his mouth. You’d think that dog food isn’t tasty, but apparently, Cayden seemed to enjoy it, as he FOUGHT his daddy when Nate tried to get it out. Oh, son! I guess he thought the bowl was one big never ending supply of puffs! We have continued to laugh over that and plan to use it mercilessly as he grows up, or at least until he gives us a better one to use!

-Tami

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Today was the day for the dreaded sedated echo. In true Cayden fashion he refused to eat this morning before he wasn’t allowed to eat anymore until after the echo. Of course, that made for an extremely cranky and unhappy baby. I took off half a day to go since he was being sedated, which hasn’t happened since he was in NICU. He was very clingy to me and screamed during his chest x-ray and then fought hard when it was time for the sedation meds. They are bitter and it took a lot to keep him from spitting them out. Once he finally passed out we took him over to get his echo.

It sure brought back a lot of memories watching the monitors and knowing that we could read and understand all the numbers related to his breathing, Heart rate etc. My heart dropped when I saw his respiration start dropping and continue to drop until it was at eight. It quickly went back up (the leeds were a little off too), but wow, that surge of panic and fear was RIGHT there. You try hard to not think of those feelings once your baby leaves NICU, yet they sure pop back up in a moment like that.

He was SO drunk once he woke up from sedation, yet he was a happy little drunk! After he was good and awake and had some fluids we were allowed to wait in the big waiting room for his actual appointment. Dr. Crystal was great and explained that his echo looked NORMAL!! Yep, no signs of the ASD or even the Pulmonary Hypertension.

Of course, the PH needs to be monitored every so often (can be done by pulmonology) to make sure that nothing changes as he continues to grow and the Sildenafil gets completely out of his system. Dr. Crystal gave us the option to call it quits with cardiology now or come back in a year for a complete check and see how he is doing. He made it clear that we could come and see him anytime if needed and that he would be happy to answer any questions we had about Cayden’s care. What an awesome appointment!

Once we got home and fed Cayden some solids, he was off and playing. Later on I was sitting on the couch watching him flip through the pages of his books and he crawled over towards me. He pulled up on the couch and started cruising along the couch towards me, trying to get to the computer.

So, I moved it and he cruised almost the entire length of the couch! I was floored to say the least. It is something that he has been resistant to in therapy and at home, yet he did it like he was a pro! Look out world – Cayden has found another way to move!

Here is a video I took of him (edited by Nate) and his new found mode of transportation.

-Tami

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Cayden writes;

Today daddy told mommy he was taking us all to the park. I dont know what it is, but it doesnt sound fun. everytime we park we just go into a store or something. we got to the park and daddy said “We’re Here!!!” I don’t know why he thinks it such a big deal. I had just fallen asleep and didnt really want to go shopping now. daddy got me out of the car seat and as we were walking from the truck daddy said in that annoying high pitched voice “Look it’s the park, baby!!!”

when I looked I saw this funny looking building that has steps and holes all around it. there were these seats that were tied to a pole. mommy and daddy said they were “swings”. we walked up to them and daddy wiped the seat and chains with a cloth and then he sat down and I sat in his lap.

daddy kinda stood up then all of a sudden we flew forward, then as we were going up, we started to go backwards. then we went forwards and backwards. it was so much fun, I felt the sun and the wind go through my hair. i loved it. then it was mommys turn and it was fun with her too.

after i went on the swing with mommy and daddy they put me in a swing all by myself. I just sat back as mommy and daddy took turns pushing the swing back and forth. It was so much fun, i bet someday i will go really high.

after a few minutes daddy said it was time to go down the lide. i dont know what the lide is or where its at, but if it is fun as the swing, i cant wait. daddy told mommy to take me to the funny looking building. mommy went up these funny steps with little holes in them and then she sat down on the thing she called a lide. I sat in her lap, thats when i saw daddy at the bottom of the lide. he was pointing the camera at us. mommy held on to me really tight. I am happy she did because we were so high up, much higher than the swing.

then all of a sudden mommy moved forward and we went all the way down to the bottom of the lide where daddy was. it scared me at first, but it was fun after. we went down the lide 2 times, then daddy said he wanted to take me on the bendy lide. it kinda looked like the lide mommy took me down, but this one was bigger, and it bended. daddy took me to the top and when we looked down mommy was really small. daddy said it was cause we were so high up.

daddy then sat on the lide with me in his lap. daddy tried to move forward then said “UHT OHH, MY BUTT IS TOO BIG FOR THE LIDE” we didnt go very far and daddy had to walk his legs down the lide, then all of a sudden we went down the lide really fast.

I had lots of fun at the park and cant wait to go back. mommy and daddy said they were going to get me a swing to play with outside when the weather is nicer.

Love,
Cayden

You can see all the pictures of Cayden at the park by clicking the picture below.

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Cayden had a relaxing Valentine’s day here at home with us playing with his new toys he got. He got a teddy bear that plays music and has a spinning light propeller that says I love you from Grandma Whittredge and a bubble blower that blows a TON of bubbles from Gamma Sablotny.

Last year in NICU he was so small that a preemie onesie his Aunt Kim got him wouldn’t even fit. He was still wearing his harness and on the vent.

Now look at him!

You can see more of Cayden’s Valentine’s day pictures HERE

Cayden is crawling ALL over the place and is far more confident about his new found mobility. Nothing is better than walking in the door after being gone and he speed crawls straight to you!

On February 9th, I was on the phone with Nate as he witnessed Cayden STAND UP by himself at his music table!!!

He had been pulling up to his knees and could get to a standing position with a little help for a while, but he hadn’t stood by himself. Now that he can, he is doing it more often. Last night, he stood up no less than four times within a few hours. No cruising yet…

Cayden is slowly going for all of his check-ups with all of his doctors. He saw Dr. Robertson on the 15th and the decision was made to wean him from his Sildenafil and then see how he is doing when he has his echo in March!!

This week, he saw Dr. L for his helmet. Dr. L said that his head looked good and that he didn’t need the helmet anymore!!! It has now been retired to the shelf in his room. Dr. L said his head shape will continue to improve on its own and Cayden will help as he rolls around and sleeps in different positions.

We discovered what we thought to be a rash on Cayden’s arms and legs and in turn called Dr. P’s office. They advised us to bring him in since it hadn’t gone away in over a week. We were told to try a few things for a bit and if it didn’t change things, then it is more than likely a genetic skin condition called Keratosis pilaris. It doesn’t bother him and it’s not contagious. Nate has it too and he didn’t even know until Dr. M pointed it out to him. Guess you never get too old to see the pediatrician! =)

Nate Adds: “Dr. M, just looked at me and said, “Not to be rude…” then she grabbed my wrist with one hand and pulled my sleeve up to my armpit with the other. Then she rubbed the skin on my arm between the top of my shoulder and elbow. She then said, “Yup, you got it too!”

March will be a busy month, with multiple doctor appointments. Be on the lookout for new pictures in some previous posts soon, as we are FINALLY getting around to uploading them. =)

-Tami

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