I Am Fearfully and Wonderfully Made

Spaghetti!

Practicing Standing.

Peek-a-boo!

Saying "See-ya-later" to Daddy before he got on the plane.

Crazy jumper.

Eating his puffs!

Nakey baby waving, "Hello!"

My hero in red. <3

Picture of his teeth on Wednesday... they are in even more now!

Push ups time!

Before I get into the details of Caelin, I would like to inform everyone that February is heart month. Heart meaning Congenital Heart Disease Awareness, not Valentine’s Day. CHD Awareness week specifically is February 7^th through February 14^th. Keep your favorite heart warrior in mind ;) and remember that 1 out of 100 babies born have a CHD. Not all of them are as complex as Caelin, yet some are more. Too many of these children do not get to know life after birth, let alone see their first birthday. Caelin has beat many odds stacked against him and others have not been as blessed. So please, let’s come together and be informed about CHD and how we can help those affected. Today was National Wear Red Day for CHD and we are ecstatic with the number of people who are wearing red in Caelin’s honor and for all the other heart warriors out there… thank you! Your support and love mean more than we could ever begin to explain!

A couple days ago, my “Inspirations” application sent this to me: “Psalm 139:13-14, 16 For you formed my inmost being. You knit me together in my mother’s womb. I will give thanks to you, for I am fearfully and wonderfully made. Your works are wonderful. My soul knows that very well. Your eyes saw my body. In your book they were all written, the days that were ordained for me, when as yet there were none of them.” This quote so perfectly fits Cael’s miraculous destiny for greatness. Through all of Caelin’s struggles, obstacles and emotionally trying times this quote reminds us that Caelin has a purpose. Before we knew of Caelin’s heart defect and the affects it would have on us and so many, we hoped Caelin would become a happy, influential and productive individual and we now KNOW he will, as he is off to an early start. Already, his resilience, determination and strength have brought hope, love and faith to our family and to so many people around the world.

So since it has been a couple weeks since the last blog update (sorry), let’s get you all caught up! J The past two weeks were phenomenal. Caelin has healed from his sickness and is tolerating feeds and building his endurance during physical activity. On Thursday, January 24^th, Caelin’s top, front, left tooth broke the skin and Friday the top, front, right tooth broke through! Both teeth are coming in SUPER fast. Within just one week, the complete bottoms of both teeth are already exposed. Although he is constantly on chewing anything his little fingers can grab hold of, he has not been unusually crabby or irritable- thank goodness because he does not like Orajel and he cannot have Tylenol.

Caelin is proving to us all just how ready he is to become mobile. He is eager to try new things and never bats twice at an opportunity for success. For the most part, he can go into a side sit while reaching for toys and tries so hard to pull himself back into a basic butt-sit… he gets a little bit better at it each day. He also tries to pull himself up into a sitting position while lying down on his back… he can do it while holding onto our index fingers with very little support. Saturday the 26^th, he started pushing up on his legs while laying down to make a bridge with his bottom. He now does these thrusts while in this position and they have gotten higher off the ground, more frequent, and he is even laughing while doing it. Juliet (PT) says this is a great step toward crawling. Caelin is standing on his legs more and actually initiating standing while being held and in transitions during exercises (forget the jumper- he’s going to end up busting that thing with how he is trying to jump out of it! Lol). In PT this past Monday (1.28), she went to put him on his knees but he straightened his legs and put his feet on the floor to stand. This is the first time Juliet had ever seen this happen and boy, was she impressed! Juliet is more than pleased with his ever-increasing physical progress, confidence, and endurance. Endurance is key with a heart baby because so many things that seem simple to a healthy person and usually require little effort, actually exhaust little guys like Cael and then this makes the baby frustrated. We have seen this happen with Caelin; he gets too tired to try and then he gets frustrated and yells/cries because he WANTS to try, he just can’t… Even though he cannot always complete certain exercises now, he is not reserved about trying them and putting forth the effort and this reassures us that he will complete them one day soon. I pray he always keeps his strong, fearless confidence and that hunger to learn and grow despite his physical limitations.

As for his diet, Caelin has made HUGE strides! On the 20^th he tried his very first real meal- spaghetti! He did well eating it and enjoyed eating the same meal as Mommy and Daddy. Since then he has tried egg & dairy free banana bread, egg & dairy free mac-n-cheese, peas, carrots, green beans, peaches, mandarin oranges, and sweet potatoes. Of all these, mandarin oranges and sweet potatoes seem to be his favorite… the mac-n-cheese was a little too soon for his chewing abilities so we will try again in a few weeks or so. He also eats puffs, mum-mums, and yogurt melts made with rice milk and he absolutely LOVES all of these! Since letting him try more solid foods he is not really interested in the pureed foods; he wants the solid foods but his chewing abilities are not fully developed but again that confidence and eager personality wants to do more than his body is allowing.  He does do great with a sippy cup. We decided to ditch the bottle because at this point he would only be on it for a maximum of six more weeks and he just does not get enough volume out of the bottle compared with the sippy. Plus, sucking from the bottle causes him to tire easily and the sippy helps to preserve that energy a bit better. Along with all of these improved oral feeding steps, Tuesday (1.29) we trialed bolus feeds and eliminated the feeding pump during the day. What a pleasant surprise- he tolerated them! FIRST TIME EVER attempted and it was a success. He still gets continuous night feeds to ensure adequate nutrition and so we do not have to overload his belly during the day but he has now tolerated bolus feeds FOUR days in a row! Hallelujah! Pride for our son is just seeping from our pores!

In between working hard and helping Caelin progress, we have been trying to spend as much family time as possible. Daddy was recently accepted to the Masters Program of Cardiovascular Science (Perfusion) at Midwestern in Glendale, Arizona so he leaves in August and will be gone for nine months. Needless to say, we are eating up every moment of family time we have while we have it! Even if it is just cuddling up on the floor reading books, or watching Mickey on the couch or an extended bath for Cael because he just loves splashing in the water. So we recently went to the zoo and saw the new baby elephant among many other animals. We go for lots of walks and enjoy the close parks. We went to Babies R Us and tried Caelin in a walker; as soon as Mommy sat him in it, he was off! Well, he took off backwards but that’s okay because it is developmentally appropriate. ;) We were still pretty shocked that his little legs knew what to do and although we did not buy it that day, we decided to go back two days later and get it as an early birthday gift. He LOVES it! He has used it outside, rolls around in the kitchen with it while Mommy is cooking dinner and he can even push it across the carpet- GREAT investment!

Speaking of birthday, it is EXACTLY 6 WEEKS until Caelin’s FIRST BIRTHDAY! OH MY March 15^th is coming fast! We cannot believe just how fast time is going by, how much Caelin has healed and grown and just how blessed we are to have him in our lives. We truly had no idea what we were missing before we had Caelin… no one could have ever prepared us for the unconditional, absolute love and pride we feel for our son. Well, I will save those emotions for his birthday post. But with his birthday coming up, we are hoping all of Caelin’s family, friends and fans near and far, who are so much a part of his story and support system, will send him a birthday card! Caelin’s Mommy will be creating a collage of all his cards for decorating for his first birthday and then putting them in a memory book. We would love for you to write to him and wish him a happy birthday but we would also like for you to tell us a little bit about yourself and/or your family in the card so he (we) can know more about the wonderful people whose great love, prayers and well wishes have made him victorious through countless battles! He has his very own address:

Caelin Clingan

PO Box 1631

Largo FL 33779-1631

Imploring the Jinx

Sitting in his big boy bath.

Smiley!

Playing with his new Daddy's built mirror and pull up bar!

Playing with blocks!

At the park!

Loves to go for walks!

10 months!

Swinging for the first time!

Playing with his Pooh Bear!

Grown so much!

Classic.

Can he get any cuter?

Daddy & Cael!

Momma & Cael!

For those of you who may not know, I, Caelin's Mommy, am superstitious. I hesitated to announce Caelin had no "scheduled" doctor's appointments until March in the last blog but let my pride overtake my superstition; therefore, imploring the jinx. That's right, I jinxed it. 

On Thursday, January 3rd Caelin vomited 8 times. We took him to see cardiology to get his blood pressure and blood oxygen level tested. His oxygen level was good but his blood pressure was in the 120s systolic which is way too high for him. We had to put him on Pedialyte for 24 hours, half and half for 24 hours, and then back to full-formula feeds Saturday evening. He had no vomiting Friday, Saturday, Sunday, or Monday. Then Tuesday, January 8th he threw up again and had unusual stools; they imitated the ones he had back in September when he was admitted to the hospital for abnormally high liver enzymes. The vomiting and stools continued on Wednesday and Thursday. Thursday Mommy called GI but no one was available until after 2pm, Caelin's Pediatrician did not come in until 3pm, so that left cardiology. I spoke with the cardiology nurse and she suggested to bring him in right away to be examined and get blood labs drawn- we are so blessed with how amazing this office is and how much they care for Caelin. Again, he had high blood pressure and his liver enzymes were severely elevated. His AST was 720, ALT 427 and GGT 333. With these results, Dr. Stapleton (Cardiologist) contacted Dr. Wilsey (GI) and recommended a liver biopsy since Caelin's enzymes have been a problem for 5 months now. Cael had follow-up labs on Monday which showed significant improvement in his enzyme levels: AST 360, ALT 158, Bili 1.5, GGT 244. Because they lowered so quickly, Dr. Wilsey attributes the elevation to stress from a virus. To check his heart, Caelin had a BNP blood test done which could indicate if he is in heart failure, and if so to what extent. This number is one they like to trend as a single number is not always an accurate representation; however, Caelin's level was 32 which is NORMAL and indicates NO heart failure. AMEN! Anyway, long story (kind of) short, Caelin is NOT getting a liver biopsy. We have our concerns and apprehensions about the procedure even though we really want to know what is going on and we do not want Caelin to go through it until it is necessary. Dr. Wilsey does not feel it is necessary because although his liver is slightly enlarged, congested and descended (as a result of the stressful environment from his abnormal heart), it is functioning normally. Dr. Wilsey reassured us that since Caelin's liver function is normal and with the liver being the only organ that can repair itself, when those cells get damaged from a virus, his heart function, or a medication and the stress causes his liver enzymes to elevate (more in the bloodstream) that it has the ability to mend and start fresh on its own. Caelin will get his labs retested the first week of February and is scheduled to see Dr. Wilsey on February 11th. So no, Caelin will not be free of any appointments in the next couple months to follow... shucks. :/

So before all of this vomiting nonsense, Caelin started a new feeding schedule and rocked it. He was getting breakfast, lunch, and dinner purees with a bottle offered 3 times a day, too. He got up to eating about 4-5 ounces of food a day and drinking an ounce or so from his bottle! Now, we are starting all over and working on condensing his feeds back down. With a cardiac baby, many parts of life are cyclical instead of progressive... at least for a little while. Patience is necessary but easily clouds behind frustration and excitement.

Caelin finally had the evaluation at Early Steps on Tuesday, his 10 month birthday! Initially we were told his heart condition automatically qualified him for the program, so I was brutally honest about his abilities and helped him show off. Afterward, they informed me since his heart was “repaired,” his condition did not qualify him automatically. Well, he was one point away from not qualifying for the services because he was scored almost developmentally "normal/average." We’re not talking “normal/average” for a heart baby who underwent 4 open-heart surgeries, 48 hours on life support, and 50 minutes of CPR, we are talking “normal/average” for ANY HEALTHY baby! Proud cannot even begin to describe how Mommy felt during and after this evaluation. The evaluators kept commenting on how great of an evaluation he was having, how alert and interactive he is, how he does not look like a baby who spent more than half his life in the hospital and how surprised they were with his abilities! They said he has above average fine motor skills for even a NORMAL 10 month old! They watched him pick up a raisin with his pincer grip (not just scooping) and their jaws slightly dropped accompanied with a look of confusion. [Insert pause for celebration- WOO HOO!] His gross motor skills (crawling, getting himself into a sitting position, weight-bearing on his legs) were ranked a 6 out of 10, which isn’t even that bad apparently. Gross motor is where we (Mommy & Daddy) feel he needs the most, and possibly only, catching up. He was ranked the lowest in “Adaptive Skills” and that is per their evaluation, specific to what they saw and asked. This is the only category where he did not score “average” or above. Had they asked about dressing and I told them that he helps us get him dressed by pulling his shirt down over his face and pushing his arms through his shirt (or pulling them out) when dressing or pulling off his socks/hat, he probably would not qualify. We just really want him to get all the help he can with gaining confidence and strengthening his muscles to catch up physically. That being said, he may not be in the program for as long as many children with similar challenging starts to life. Cael really has come a long way… this is one area that is most certainly progressive!

Getting into details on his progression, his list of most recent developments and favorite things to do has expanded. He loves to bring his hands together and bang toys (still not a fan of clapping with just his hands). He loves to use his problem solving skills. For example when he is on a blanket and a toy is on the opposite side of the blanket, out of his reach, he pulls the blanket toward him so the toy moves within reach. It is really the coolest thing watching him learn and problem solve on his own! He continues to bear more weight on his legs and now jumps while holding him. When he is in his jumper, he lets loose and expunges all of his energy until he can’t jump anymore! Now that he is feeling better he is back to rolling over both ways on his own, especially when he is enticed by a toy or book. He is trying so hard to crawl, too. He doesn't have the strength to get up on all fours nor does he have the coordination to get his body into the crawl position but when he is on his tummy, he tries really hard to move to reach desired objects. We are working on this at home and at PT. We’re also working on getting him to pull up himself from laying to sitting and sitting to standing. He likes to brush his teeth, which is now part of our nightly ritual. He reaches for absolutely everything and has an increased confidence and stability when doing so. He also reaches when he wants to be picked up. He’s really into faces & mimicking gestures, expressions & noises. And he said his first word… "Dada." Yes, it is developmentally appropriate for “DADA” to be uttered first because it is easier for those sounds to form, nonetheless still spiked some Mama jealousy. ;) As for the beginning of “Dada,” Cael started off whispering it, which was absolutely adorable. Then Monday he began shouting it. He loves to say it all the time, but we are pretty sure he associates it with Daddy, too. Along with his new sounds, he is experimenting with intonation & sometimes inflection when having a discussion. Of course, Mommy and Daddy’s part of the discussion is in English and Caelin’s is in Caelish. Oh yes, and he whines. Oh boy has he become the king of whining to get what he wants, to let us know when he does not want something, and to express frustration. Luckily, distraction and redirection work for him most of the time... most of the time. 

Well that's pretty much the gist of what has been going on with our big 10 month old! Two more months and he is going to be the "Big 1!" These past 10 months have been the best of our lives and we are so thankful for each and every moment we have with our miraculous son. He is SO AWESOME! Thank you for your love, support, and prayers! We are truly blessed by all of you and by God!

To our friends and family in Michigan, be on the lookout for Caelin and his folks visiting in June! Plans and details are in the midst of getting worked out! :)

Merry Christmas & Happy New Year!

Splashing in the bath

Sitting forward in the tub

Helping Mommy make Christmas cookies... wishing he could try the batter! Sorry bug!

Looking at Christmas lights

Cael & Mommy

Cael & Daddy 

Cael & Grandpa

Little stud.

Merry Christmas with Mickey!

The last two weeks of the year were fantastic! We had so much fun together enjoying the simple joys of life with a visit to the park, snuggles and play time in our home, going to see Christmas light displays and taking a trip to the Gulf. Caelin continues to grow and progress each day, never ceasing to amaze us. He absolutely loves to actively give hugs, kisses, and high fives, to babble, and to play peek-a-boo (he insists on being the peek-a-booer and likes for us to ask, "Where's Cael?" He will hide then reveal his face and we exclaim, "Peek-a-boo!" Simply loves it! He is also teething again... His two bottom teeth appear to be completely in and we suspect his bottom eye-teeth and/or his upper front teeth to be next.

Caelin’s Physical Therapist, Juliet, is now in the office Mondays & Thursdays so Cael finally sees her twice a week instead of just once. Although he has had PT for only a few weeks, the improvement in his skills are remarkable. He is so confident and fluent in his movements, puts weight on his feet while in and out of his jumper, is trying to push himself up while lying on his stomach and is rolling over on his own! Not only does he reach far in front of him and recover well, but he also reaches from side to side while keeping his balance and recovering. His growing confidence has also got him sitting up in the bath on his own. We NEVER let our hands more than a few inches from his body because he sometimes gets lazy in a split second and his little bum is sometimes slippery and the water can just be too dangerous. We are working with him to put more weight on his legs while being held and supported and to put more weight on his arms for longer periods of time while lying on his stomach. In the last blog, I mentioned how Caelin had a Preliminary evaulauation for Early Steps planned but it was rescheduled for this Wednesday, January 2^nd. We were not too stressed about it though because he has been so successful with his twice-weekly PT visits with the most lovely Juliet.

Caelin’s Cardiology follow-up visit last Thursday went well. He tolerated the Clonidine wean and experienced no symptoms of withdrawal. His sleep schedule changed a little bit but he still sleeps through the night for 11-12 hours straight. As a result of the continued Actigall and discontinued Clonidine, Caelin’s liver enzymes lowered and seem to be on the trend to normalize; his AST and ALT are finally both below 200! Dr. Stapleton has attributed his elevated enzymes to a reaction from the Clonidine & hopefully this is the case. As we agreed during the visit, Clonidine is a medication that will stay in the past. We have had enough excitement with that blasted medication. Cael does need to get these labs redrawn at the end of January to ensure they are normalizing and not going back up. If his liver continues to act up, a liver biopsy is the next step. We are praying and hoping this will not be necessary. He also had a GI appointment today and Dr. Wilsey acknowledged Caelin’s progress, pink color & improved lab numbers. This month Caelin got caught up on his immunizations finally, too! So since his Cardiology, GI, and Pediatrician visits all went well, he does not have another doctor’s appointment until MARCH! We cannot believe he is scheduled to go nearly THREE WHOLE MONTHS WITHOUT A DOCTOR’S VISIT… key word scheduled but hopefully he behaves and stays healthy… he will be eating a lot of apples, that’s for sure! ;)

Speaking of eating, he had a little setback with getting sick and we had to start condensing his feeds all over again. Tomorrow we will be starting a new schedule though and we are hoping his little body will tolerate it. We have been giving him pureed food 2-3 times a day but with our busy schedule, this was kind of inconsistent. So now that he is feeling better and is tolerating feeds well, it has become a priority to get him on a more “normal baby” feeding schedule and get him to like solid foods. He has gone through phases where he LOVES mum-mums and then the next day he gags on them and refuses to eat them. Well he is in the gagging phase and will not let any type of solid food in his mouth, only purees. So we are hoping this new schedule will help him have more of a hunger cycle and have consistent positive experiences with eating which will help him feel empowered and confident to eat mum-mums, puffs, cheerios & eventually soft small bites of cooked vegetables, fruits, pastas, etc. *Hopefully* J

Last week Caelin’s Grandpa was in town, which was wonderful. It was so great to watch him and Caelin play, interact and love on each other.  This was the first time they got to be together since Caelin was first born and they had such a blast together… it’s times like these that really make us regret not living closer. Caelin absolutely loves everyone who visits him. He is the most inquisitive and social little boy I have ever known; he is so interested in people and how everything in life works. I truly do wish he could be around family more often and play with all his little cousins. He has yet to actually interact with a baby his age, I feel like he is missing out. :/ Hopefully 2013 will be the year that Caelin gets to meet all of his awesome cousins and other family members who could not come down to FL in 2012.

We did have the most beautiful end to 2012. I love that the year ends with the most wonderful holiday of the year- Christmas! This was (obviously) Cael’s first Christmas and it was absolutely perfect. The day started with two excited parents who awoke way before the baby in anticipation of the days events… unwrapping presents, playing with new toys, taking pictures, eating delicious food, taking a trip to the beach and laughing, all while A Christmas Story is playing in the background. Caelin was overwhelmed with the process of unwrapping his truckload of presents and did it in two segments. He wasn’t really sure of what to do with the first round of presents but always smiled after the next toy was revealed. During the second round he understood what to do and really enjoyed pulling off the wrapping paper! He got so many great gifts from lots of people and we are very thankful for that! THANK YOU! So the day ended with an exhausted but very happy baby who discovered how to roll over on his own and two parents who felt blessed more than ever to have had such a beautiful first Christmas with our healthy, happy, handsome & strong son in our home! We did miss seeing all of our family members, though.

Before reflecting upon 2012, I must remind you there is no such thing as a bad year… only bad moments. Trust me, it would not be a stretch to say 2012 had more bad moments than any other year but it was those moments which made us appreciate the good, great, and best ones. We learned how fragile life is but also how truly magical and marvelous it is. Many believe it was a bad year for us and that 2013 can only be an improvement when that is simply not the case. As with any year it had its strengths, weaknesses, struggles and triumphs but above everything, it was the year in which our first son was born and beat all the odds set against him. He survived life after birth when many were skeptical. He taught us more about life than we learned in our previous 23 years. So you see, it is truly difficult to say goodbye to 2012, as it was full of many of the most wonderful moments of our lives... 2012 will always hold a special place in our hearts and in our memory.

 

So as we go forward into a new year, today is the day we overlook a year of heartache, fear, unknown, disappointment, and discouragement. We put behind us the empty words, broken promises and egocentric acts of those whom we once counted on. We forget the mistakes, accidents, and regrets of others and ours. Today, we turn all of these life experiences into lessons and moments from which we learn and grow.

And today we remember. We remember a year where our dreams became realities with the birth of our son, Caelin. His birth forever changed our lives as he became the center of our universe and we welcomed this change with arms wide open. We remember a year of strength, courage, resilience, determination and support. Our gratitude surmounts upon recalling the support from those who have been in similar shoes and from those who never want to know what our soles feel like. We cherish the ones who have helped us spiritually, mentally, emotionally, physically, financially and every other way imaginable. We look back on a year full of tremendous happiness, substantial milestones, blessings, and MIRACLES.

And today we wish for a year of optimism, continued altruistic support, health, and progress. We pray and vow to make 2013 a year full of LIFE where we continue to embrace the simple days at home, the special days out on the town and everything in-between. 2013 may hold no financial progress for our family but let there be physical, spiritual, and familial progress. Allow our son continue to learn, grow, and love as a healthy infant entering toddlerhood. And let our family grow closer together and closer to God.

Cael checking out his new chair from Santa! 

Loves his new toys!

OooOoOooh!

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HAPPY NEW YEAR to all our loved ones! Thank you for making 2012 the most memorable year of our lives! We look forward to making memories with you in 2013.