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.

All I Want For Christmas & Evermore

I love his face.

Waiting so patiently at his cardiology appointment.

Self-photo. He takes good shots of himself!

Sleepy boy snuggling with the blankie from his cousin made from Great Nana's sweatshirts.

Just got done creating a special gift for a special someone!

Time to eat. I just love this picture.

Eating the tracking information for Grandma's present.

I spy with my little eye, a baby. Yes, that is all of our clean laundry that was at the bottom of the priority list for weeks.

Eating soda crackers with Daddy.

Caelin was supposed to be napping but apparently he thought he should make better use of his alone time.

First time in a cart without his car seat. Thank God for Lysol wipes, hand sanitizer & blankets.

Momma & Cael shared a baguette on our date night to Panera.

Cutest date ever, although not the most loyal. He had the audacity to flirt with other women while on our date.

Check out those toes on the ground! He's jumping like a big boy!

He's reaching so far and recovering so well! His comfort and confidence level is increasing with his strength!

Trying to grab Mommy's phone. See the snot coming out of his nostril... poor sick little bud.

Check out the drool under that double chin. From babbling and blowing raspberries while avoiding a nap! :)

Tummy time!

Mastered sitting... when he does not want to be lazy. He now finds it entertaining to throw himself backward purposely.

Lounging in his bath, holding his hands and waiting to be pampered.

So here is that post I promised I would write sooner than the trend of how I have been writing! J However, there is not much activity to share about our little warrior because we have been trying to keep life as uneventful as possible right now as he is sick. =( Yes, as many of you know, Caelin has his very first cold. Last Wednesday he threw up in the evening but we thought he just needed to be vented. Thursday he was fine and then he threw up again Friday and Saturday. After Saturday’s double dose of vomiting, we became suspicious that it was more than just venting related and worried it was his liver enzymes again. I called GI first thing Monday morning and left a message for a nurse. She called me back in the afternoon and after speaking with her, we decided to put him on Pedialyte for 24 hours then transition him back to formula as tolerated and if the vomiting persisted to come in to have his blood drawn a week early to check his enzymes. Well, that night he developed a cough and sneeze. Tuesday morning he woke up with a stuffy nose, constant sneezing, and a decent cough. Thank God he has had no fever and his temperament hasn’t been too concerning, especially because he is still not allowed to have Tylenol because of his liver.  His color has been normal (indicating good blood oxygenation) and pulses have been great so we feel his heart is doing well through this virus battle. If we notice any changes at all, we will most definitely head to the hospital but we are hoping Cael will not get worse. He goes through quick spurts of being happy and playful to cuddly and sensitive but he is still overall our resilient and eager warrior. With his cold he has not been much into eating solid foods but he felt better today and ate about 2 ounces of food. We are hoping and praying this is just a quick virus and that it does not feel the need to linger around our house. We always have hand sanitizer in every room of our house, are frequent hand washers, and are big proponents of Lysol spray and wipes so hopefully this will help abolish the wrath of the virus.

Tomorrow Caelin has his weekly physical therapy visit and we are hoping it is more beneficial and productive than last week’s. He was not in the mood to play with Juliet or Mommy during the visit and Mommy suspected he was not feeling well, as he was not himself. He was not happy with anything we tried, so I guess tomorrow’s visit couldn’t be much worse. We just really want Caelin to get the most possible out of these visits but I guess even though the visit itself did not go well, Juliet did show Mommy a new holding position to try at home to get Caelin to bear weight on his legs and it IS helping! So we are still thankful and appreciative for the help and advice from the specialist. Tomorrow afternoon Caelin has a preliminary evaluation from a representative from the Early Steps program, which helps children from birth to 3 years who have a developmental delay. We are really hoping he qualifies for this program as they do at home therapy! We would no longer have to take Caelin out to the hospital for his physical therapy; the specialist would come to him at our home, his natural environment. This program focuses on the whole child so this same specialist would be able to help him in other areas of development here and there, if needed. This program would be so great for our little warrior and our family!

One thing I forgot to mention in the last post... Caelin's cardiologist is predicting his next heart surgery will be in mid to late summer 2014. Caelin will be close to 2 1/2 years at this time and his heart will most likely be ready for the physiology of the Fontan. Although we want Caelin's heart to be relieved of extra work and pump as efficiently as possible, we are not looking forward to him having another open-heart surgery... especially as a (assumingly so) mischievous and inquisitive toddler. 

Otherwise, there is not too much going on- just trying to get our little guy healthy and keep ourselves healthy, too. We are most definitely ready for Christmas and for visits from family! Decorations are hung, cards are mailed and presents are wrapped and nestled under the tree. I look forward to Caelin unwrapping his gifts Christmas morning! Our video camera is ready to record! Our first Christmas as a family of three is only twelve days away now (shall I break into song here?) … This time is so delightful and enchanting. There is truly something magical about watching my child’s face brighten with wide eyes and a big two-teeth smile upon seeing a green tree start glowing with fluorescent rainbow Christmas lights topped with a color-changing star with just the flip of a switch… No matter how many times he has seen it, his reaction continues to be that of such genuine awe. And no matter how many times I see his reaction, the same complete feeling overwhelms me and I am reminded that everything I will ever need, I have. Each and every child is a blessing but Caelin is more of a miraculous blessing than we ever imagined any child could be. Until you have a child, you can only speculate the impact he/she will have on your life. Until you have a child with a major birth defect and witness moments first hand where angels carry him back to you from Heaven’s gate on multiple occasions, speculation of the impact is impossible. I thank God every day for Caelin and his triumphs over what many would call the impossible and for the people who aided him in his victories. Perhaps it is cliché, but enjoy and embrace every moment you have with all your loved ones… the good, happy, sad, frustrating times and everything in between and when you are given the opportunity to forgive and be forgiven, clinch it.

Thank you for your support. Thank you for your love. Thank you for your prayers. Thank you for being a part of our lives in so many ways!