Caysen Year Four: A Letter

What a year or two it has been! Looking back on just the change from last year’s birthday to this year, we are so so incredibly blessed. Last year at this time you had been in the hospital for almost two months. You still had a swollen belly, were puffy yet scrawny and malnourished looking, and  you couldn’t make it through the day without albumin – because the dreaded Protein Losing Enteropathy had crept in and was taking its toll. 

On Mother’s Day in 2016 you were sick, and we ended up going to the hospital. We didn’t realize that you wouldn’t officially discharge until November, and with a new four chambered heart. 

To think all you have been through in your four years makes me so incredibly proud of you. Just when I thought you would never eat by mouth, you decided you would. When I wasn’t sure about your motor skills, you proved me wrong. It’s a reoccurring theme, when I’m unsure of your resilience; you prove to me that you have it!

This past year brought chest tube after chest tube, poke after poke, 10 different fractures in your little body, bags and bags of TPN or IV Nutrition, a medical flight, 2 different children’s hospitals (with staff at both that we dearly love), and most importantly that beautiful new 4 chambered heart. 

Last year at this time the future was so uncertain for you. Could you make it home with your native heart? How much longer did you have? What were our options? I find that this year, some of those questions are answered while some never will be. You could not make it at home with your native heart – but it served you well. Our hand was forced when we ran out of interventions and had to list you for transplant. As for the question as to how much longer you have? We don’t know. But if you think about it, no one knows. While you might have even less than the average person – we are still so grateful for each day and plan to live each to the fullest. We couldn’t be more thankful for your organ donor!

Here is what you are up to now:

You are walking better after over 6 months of consistent PT. In fact, you spent some time this past weekend “racing” your brother on his bike. Your run is the cutest thing ever, you grin and laugh the entire time. I couldn’t help but notice your lack of blue lips, or the fact that you wanted to keep racing him. You couldn’t have done that before! You still show your weakness when it comes to climbing steps, but we are getting there!

You are wearing a size 4T shirt and usually 3T to 4T shorts. Your shoes are a size 6. You weigh in at about 33lbs. You love eating! Some of your favorites include chili, blackberries, chili cheese fritos, orange bell peppers, hot dogs, taco meat. You still have your G Tube that we put meds in, we push water to keep those kidneys happy, and we do some nighttime feeds.

Your sleep is still a mess. You don’t like to be alone, that’s for sure! You will often wake us up screaming for mom or dad, or we will wake up to you just climbing into our bed with your Pikachu or your giraffie and your blankie. Some nights you sleep like a pro, others you won’t. You still nap during the day,usually an hour is good for you to go until about 10 or 11pm that night. You are definitely an early riser, often up by 7 unless you made it to our bed – where you sleep like a log.

Your favorite show is Paw Patrol, but you still enjoy your Bubble Guppies as well. You love watching the most random YouTube videos as well. You have an imagination like I haven’t seen before – you can pretend play like no other. 

You always want to be like your brother or your Daddy. You had to go to the dentist recently where you insisted that you had a loose tooth, like your brother. You are always thinking of him – wanting to get him a toy or a piece of candy anytime that you do. You also enjoy being like your Daddy. You will look for your tools to “fix things” just like Dad. You even use your tools to “fix” me, cutting with your saw and repairing and then giving shots telling me “this won’t hurt”, and listening to my heart – “sounds good!” I think you’ve heard those things a time or two before.

Your dimple little smile seems to get all kinds of attention, and your Mohawk suits your personality. You started school this past year and you LOVED it, getting to take you r ‘packpack’ like brother and learning in the classroom setting. The independence suited you, I’m interested to see how this next year of a full day Pre K goes for you! 

You are down to handfuls of meds, most important being the anti rejection meds that you will take every 12 hours, for the rest of your life. If you don’t take those about 12 hours apart your immune system becomes less suppressed and that can be dangerous for your foreign heart. We are still working on your bone density as well, and will continue with infusions.

Overall, we are so incredibly blessed to be where we are today. We realize living in a hospital was no way to live, and it especially showed when you quit talking to us for a couple of months while inpatient. This second chance at life is nothing short of a blessing, and we are thankful for your donor, day in and day out. It was by far the most selfless and most precious gift you will ever receive. We pray for the donor family nightly as we know their loss was tremendous, and yet despite their pain they did something so courageous.

We know that transplant starts down the ticking ‘clock’ if you will, but that doesn’t stop us from taking advantage of every moment we’ve got. From pig piling on each other in the living room, playing hide and go seek, jumping through the sprinkler or just watching a movie together – we have learned the importance of time well spent, and we will continue to do so. We will continue to love deeply and always, all while holding the donor family close. 

Because every day when we look at you we remember, you are nothing short of a walking miracle. 

God is good!

Year Five: A Letter

Dear Camden,

STOP the madness. I cannot believe that my little baby, the one that made me a mom, is now officially 5. FIVE! That's...ALL the fingers on one hand!

Camden has been up to a lot this past year. He started school, going to a Pre-K class that he LOVED. He was so disappointed to go to summer school that "wasn't the same". He is still a cuddler/hugger - giving good hugs at the most random times. He loves to be outside, "when the weather is so nice". He is a great helper, he has chores that he completes every week, he likes to help his dad mow the lawn, and he follows directions fairly well for a 5 year old. He likes to help feed the dog, change the trash, do any of the things I'm doing - especially if it comes to cooking. He can crack and egg like a pro!

He loves to swim, and this year he finally made the transition to swimming without floaties. He does great, and is a tan little fish. He gets to swim nearly every weekend, and some weeknights too over at grandma and grandpa's house. He still has sandy blonde hair, ridicuously long eye lashes, bright blue eyes and a tan that many girls would be jealous of. He is about 42 inches tall, and he weighs about 38 lbs, which is small compared to other kindergarteners in his class that are almost 6, and he's barely 5!

Speaking of growth - as he has continued to get older his toes are still turned in, causing his little hips to get out of alignment. God has blessed us with an amazing man of God and chiropractor who is helping us line his little body up right. We are adding little foot orthotics to his shoes to help his little feet turn out, and he is doing really well with them. We are believing in this miracle - that as he grows God will straighten him up!

He loves sleepovers at Grandma and Grandpa's, after church night on the weekends. He loves the sleepovers even more when his two cousins join him. He calls his cousin Kaitlyn who is 4 days older than him "my best girl". On some days, he will even ask if his brother can spend the night out with him because, "I really want him there".

He still prefers a morning sippy cup of milk in the morning, and a sippy of chocolate milk after school. He could live off of hot dogs and chili, I swear he might never get tired of that. He is a slow eater, but I hear that will change this year in Kindergarten, when they have about 15 minutes to eat their lunch. That will definitely be and adjustment, as he takes more time than my geriatric patients take to finish a meal. ;)

He sleeps well all night, and can still nap without issue. It's notable that during the school year he gets extra cranky by Friday's - because of staying up late and getting up when Mommy and Daddy leave for work, and there's just short "rest time" or "brain break" at school. On weekend though, he can still nap for an hour or two, especially on days when he has swam hard in the morning or been busy with the family.

His little relationship with the Lord is a precious one to see. He was helping his Dad mow the lawn not too long ago, and Dad asked him to push the mower that was turned off, to the front of the house. He started to push, quickly had trouble and stopped. He said outloud, "Hang on a second, I need to pray". He then bowed his head, said a silent prayer, and then looked up with a face of determination. Next thing I know, he's digging his toes into the grass as he's pushed forward with all of his little body weight to make that mower move, and by golly, he did it successfully, all while grining with accomplishment. It was one of the sweetest things to see! It wasn't that long ago that he was sick at school, and his teachers called to tell me they had changed his shirt that he got sick on, but were going to see how he did. I called and checked on him but he made it the whole day. When I picked him up he simply said "my tummy was hurting, but I prayed to God to help me feel better and then he made my tummy not hurt!". Faith like a child, so honest and pure.

Speaking of praying, we are working on praying about our whining and fit throwing. We are working on reminding him to stop and pray and ask for Jesus to help him calm down and ask respectfully for his wants or needs to be met - all without throwing a fit. He still has his good days and bad days at home, but overall, he's a great kid and is learning daily. He even told me the other day that he knew he could pray about his legs growing to be even lengths and that "God was going to fix it". Amen, little man; you definitely got this!

He is working on memorizing his first Bible verse, and pretty much has it down pat. Proverbs 12:22 is the verse. It was given to him at Gymnastics class and we talk about it as often as possible, and we repeat it in the car so he has it down pat.

Gymnastics is another new thing for him. He has so much energy, yet he could sit inside and watch his favorite TV show "Paw Patrol" for the entire night if we let him. So, we enrolled him in a gymnastics class for now. I think it's been good at teaching him to listen and follow directs, and in a large group setting. This will hopefully be something he will enjoy doing, and maybe he will want to try other sports and activities as we go on. He definitely loves swimming and has been asking about taking more swimming classes. We will see what develops over the next year for sure!

He's a smart little guy, always able to tell me different facts about things, and he is constantly learning. He still has some difficulty with speech, 'chip' and 'ship' tend to sound the same when he pronounces them, as do 'shoes' and chews'. Those darn "ch" sounds! Another thing is "think". It always comes out as "fink". I love it. And he told us that his grandparents recently took a vacation to "Alasaka" which - I didn't even WANT to correct him.

And oh, this little boy as a big brother. It is just heart melting. There are times when gets frustrated and pushes his brother, or takes a toy away from him, but you can tell he immediately knows it's wrong. As soon as Caysen starts to cry, he will be hugging him, apologizing to him and trying to get him to be quiet - and hurry! - before Mom and Dad hear! ;)

But in all seriousness, he is the BEST big brother. He is incredibly patient, he likes to teach him how to do things and get Caysen to follow his lead. He will pat him ever so gently on the head and talk to him, while Caysen "mm-hmm's" and nods in agreement with whatever he is talking about. He understands what it means to take turns, who goes first, who gets to watch a show and he is sure to make sure Caysen gets what he wants. Often times he will speak up for his brother, as Caysen will point to something and only Camden will see it, so Camden will speak up for him. He knows exactly what Caysen wants and is one of the best at reading Caysen's speech and motions! He is SO good at taking care of his brother! He will give him rides on his toys around the house, makes sure he has his blankie, and will always share a bite of whatever he is eating. Their relationship is really a sweet one to see. I pray that Camden will always be a great protector for his little brother.

Camden, I hope you know how proud we are of you as parents. You are smart, kind, honest and inquisitive. You have a tender heart, a beautiful faith, and a loving little soul. We can't wait to see what is in store for you, to continue to watch you grow, and to enjoy time with you while we have it. You are a blessing in more ways than can be counted, and we can't wait to see the ways God will use you in your lifetime. We pray you continue to deepen your faith and share with others, and allow God to mold you into the sweet young boy you are becoming!

We love you to the moon and back,

Mommy

A Letter: Caysen is TWO

Dear Caysen,



Well little buddy, you've made it to age two - which is quite the accomplishment considering all you have been through in your two short years. Looking back I never would have guessed we would go through all that we have, that I would have cried so many tears in the past two years, and know all of that and just how much you are THRIVING now.



It was two years ago today that my world was grey (literally!) and you entered this world screaming but with 'wet lungs'. Three days from that day, after just being discharged home, we went through more than we could ever guess, due to your half of a heart that was not detected prenatally or even postnatally.



Despite the warnings about the cardiogenic shock and the damage to multiple organs and resulting brain bleeds affecting your motor movement, your eating habits, and your overall ability to function; you continue to prove to everyone just what you CAN do. And if you get anything out of this letter or living with half of a heart, that is what I want you to focus on. Exactly what you can do.



These days you are still hovering around 21 or 22 lbs. You are getting taller, having gained an inch in the last month or so, measuring in at 32 inches. You wear anything from 12 months to 2T, 2T things swallow you up. Pants and shorts tend to range in the 12-18 month area. Your swimsuit is a 12 month size and we can barely keep it on you! You wear a size 4 diaper, a size 5 shoe, and a grin as big as Texas, with a single dimple in your right cheek that one easily gets lost in.



You continue to grow teeth in the most random of patterns, and are currently cutting some eye teeth. You still only have 4 bottom teeth, but have about 8 on top. Your eating habits vary greatly. On days where you have a fever from teeth, you don't eat at all. We end up using your g tube to push veggies and fruits in you. Otherwise you have a fairly good appetite. Some of your favorites are still hummus, salsa, avocado, hot dogs (you bring me the hot dogs from the fridge allll the time!), the soft and crunchy parts from Daddy's cajun trail mix, steak, most fruits, goldfish, and you really love pomegranate. You still get meds and soy formula through your g tube as your intake is still small in regards to what you need to eat to grow. We keep hovering around that 22lb mark!



You have the greatest laugh. I can't even describe how bubbly and heartwarming it is to hear your giggle. And when you laugh your dimple comes out and I just want to eat you with a spoon, you are just so adorable! You are almost always smiling (unless you are teething), and you LOVE to be outside. You beg to go out almost non-stop, especially now that it's warm.



Finally, you are starting to communicate more! You can say "bye" really well (which sounds like a southern bye-'bah'), mom, dad, brother, bubble (for Bubble Guppies the show - or to blow bubbles), Pearl, all done, more, thank you, bath, night night". Just this past week you started saying "no", and it sounds so cute when you say it (I'm sure that'll change, but for now - your tone is adorable!) I'm sure that I'm missing some, but that's a majority. You sign some words that you don't say, Like "please". Sometimes you will say "more" while signing "please". Even though you don't talk a whole lot, you get your point across. You will walk up to whoever you want to talk to and bang on their leg or arm with your open hand until they respond to you. Once you have their attention, you point. And let me tell you, you are the valedictorian of pointing. You can point at all sorts of things to get your needs met, or to get people to understand you. You answer most questions with "uh huh" in yes fashion, while nodding. It's pretty adorable, because we can ask you all kinds of things and you will mostly respond with a yes, with your slow and deliberate head nod.



Your memory amazes me. I can still show you a picture of Andi and you smile and point. I thank God for using you to allow me to meet such a beautiful person and have her in my life. She played a huge role in your life, and even though you won't remember her in the future, I have some priceless pictures of you two that I will always cherish! I will always talk about her to you, and I hope that you will always know what she meant to our family. We were so blessed to have her in our lives while we did.



You love the water. Showers, baths, swimming pools, puddles. You can't seem to get enough of the water to tide you over. You love being outside and that coupled with water - the swimming pool may be your best friend!



You also really adore your brother. You will talk about him, ask for him, point out things that are his. You know to take his blankie to his room and put it on his bed so he can find it after school. You love to do anything he is doing, eating or trying. He's extra patient with you, and your relationship is quite precious to see.



Another major milestone for you was allowing time away from Mommy and tolerating drop off at the church nursery. Now, you walk in proudly, eager to play with their toys. You will pop your paci out of your mouth, give me a little wave and say "bah bah" and you're on your way. You still love your Mommy comforts, but lately you have been more of a Daddy's boy than EVER! You ask for Daddy all the time, you call for him in the night, you want him to hold you, play with you, and you want to go with him EVERYWHERE. When I get home in the afternoons before Daddy, you almost always point out his mower and his blower and remind me that it's "Daddy's", and then ask to mow.



Your sleep schedule is still pretty whack. You do what you want to and when you want to! You are sleeping through the nights a little better, but some nights you are up and the only way for you to go back to sleep is to bring you to the center of the bed with Mom and Dad. Don't get too used to that buddy - it's just that Mom and Dad are desperate for sleep! You usually go to bed around 9/930 and are usually up to see us off about 545ish. Luckily your Cici watches you during the day so you can nap as you are tired. On a normal day you will nap about 2 hours at midday - but you're always switching it up on us, sometimes needing two naps.



Speaking of your Cici - how thankful are you for her? I can't think of a better way to have things for you. You get to stay home in your germ free environment if needed, and you can nap and eat on demand. It works out great because Physical Therapy and Speech Therapy still visit us at home, and Cici takes care of all of that. She makes you food, vitamixing healthy things to put in your gtube - like beets and kale, she rocks you when you're teething and need extra cuddles, and is there to give you round the clock Motrin and Tylenol when you are teething or sickly. She's been there for you through thick and thin, especially through the really difficult times. We are so thankful she can do this for you!



This fall should be an exciting time for you and Cici. Your dad and I talked seriously about putting you into daycare, but at the time you still seem to have so many demands and it's so expensive for part time care in two places. So far we have decided to keep you at home for a bit, and allow you more freedom. This fall you will start a gymnastics class, and you will also go to a daytime Bible Study Fellowship class once a week. You still get interactions with more kids, hopefully learn some more social skills all while still being able to care for you and your special needs. This will allow us to keep you close in case you get sick or aren't feeling well, without anyone having to miss extra work time.



We are so excited for what your future holds. Of course, in the near future is another open heart surgery to complete the palliative care, but other than that - seeing what else you can accomplish when something is put in front of you is rewarding to see. When I reflect back on everything, I get flash backs of Chris and I wearily dropping ourselves into bed at night after the long NICU days, interactions with doctors, doing everything we could to be a part of your care and getting well, as well as trying to care for your older brother. I vividly remember the outfit you wore that day to the ER, the staff gave it back to us to take home that night because there was no way you were going to wear it with all those lines. At the time, it was like a gut punch. Were you ever going to wear it - or anything for that matter, again? Your daddy and I took that little newborn sized onesie, and we put it on a baby pillow in between us in bed, along with a prayer blanket that was made for you. Nightly, we would clasp hands and pray over it - praying for you, for your future, and for all that God could do in your life. They were often clinging, desperate and begging prayers, but nevertheless, we prayed over that little white button up onesie with animals on it. Some nights, I would be home so late - I would wake your Daddy up to pray, or sometimes even clasp his sleeping hand and pray while he rested. We did that during your whole NICU stay, praying that you would get to come back home to us, believing in God's faithfulness and never giving up hope.



Just the other night, you cried from your crib in your room. Your Daddy went to grab you but before he got up he said "its already 4, can I just bring him here?". I mumbled yes, while he stumbled to get you. In that time I thought back, to the onesie. When it was just your clothing between us for 70 long days and nights, not knowing if you would ever make it home again. And now, you'll cry at home, and we get to put your little 22 lb self between us. Time can change so many things. In two years we went from a tiny and empty onesie to having you really there with us, and we have taken many steps and detours along the way. But hitting each milestone? Is such a beautiful blessing.



Caysen, you are living proof of what you CAN do. Of what God CAN do. You have had more near death and terrifying experiences than most people do in a lifetime. And here you are, showing what together you and God CAN do. You can achieve whatever you dream of! You have proven exactly what you can do by walking and now running after your brother. If you want to run a business, you can. If you want to help others (and I hope you always will), you can. If you want to play sports, I'm sure not going to stop you (cardiologist approved, of course!). But I want you to know, that living with half of a heart may come with disappointments. Be prepared for those. There are times where you may not be able to keep up. Where you will have to sit out. But I want you to remember that is momentary. Please focus on the fact that you CAN do whatever you put your mind to. And you have done it! You can walk. You can talk. You can eat. You can. You can. You can! Don't let the can'ts discourage you.



And that Caysen, is the truth. God is why you can do anything you put your mind to. You can! God is faithful. God is good. He will see you through. You may not always understand why or how or the path it takes to get there, but He will always see you through! The Lord will fight for you, and he already has. If you learn only one thing in this life, I hope that it is just that - faith and trust in the Lord, and just how far it will take you!



We love you so much Caysen, your hiccup laughter, your darling dimple, blond hair and ornery sense of humor. You, my little one, are a perfect example of mercy and grace and God's promises. We love you to the moon and back!



As long as I'm living, my baby you'll be,



Mommy

I would have lost heart, unless I had believed that I would see the goodness of the Lord in the land of the living. Wait on the Lord; be of good courage, and He shall strengthen your heart; wait, I say, on the Lord!

Psalm 27:13-14 NKJV

Caysen 1 Year: A Letter

My sweet little Caysen,

This time a year ago, I sure thought I had been through the ringer. I thought your arrival would "solve" my personal health issues and we could move on to our normal, happy life as a family of four. You see, I spent Memorial Day weekend last year, dealing with a terrible headache. A migraine like I've never had. This particular headache didn't go away after multiple sleeps. It lasted for a week. And when it went away, it started taking my vision with it.

After a whirlwind of appointments while 36/37 weeks pregnant with you, seeing Neurologists, Optho-Neurologists, getting an MRI, a spinal tap at 37 weeks with subsequent spinal headaches (that are of the devil) to accompany it, we finally decided that it was time to take you out to prevent further vision loss, as no one could say if I would regain it. 

During one of those appointments while dealing with spinal headaches at 37 weeks pregnant with a broken down car in a city two hours away, not able to sit up without vomiting and trying to stay cool in the summer heat; my mom, your CiCi, glanced at me and said words that foreshadowed MORE than we ever could have predicted about the coming weeks. She said "I don't know what it is about this baby, but he is special. God has a divine purpose for this baby!"

We had an excellent hospital experience for your birth. We had one of the best L&D Nurses, she took the best care of us and later she even came and brought us snacks while you were in the NICU. You were born with wet lungs, crying loudly, and spent the first 12 hours in the newborn nursery.  No one told me much of anything, and I trusted their judgment and didn't ask many questions. They kept saying that the issues you had were normal and you would be fine. I'm not a worrier by nature, so I was just so thrilled when 12 hours later I finally got to see you, hold you, and see your dimple that everyone was telling me about. 

After 24 hours you were finally released to my room in the hospital. Before we knew it, it was time to go home. Ironically, we were offered an extra night stay in the hospital. But, being a second time mom, I was confident in the decision that we would be okay at home, so we headed out that Saturday afternoon. Little did we know the ride we were about to be in for...

We spent that first evening at home, attempting to sleep, recuperate, and get you to eat. It wasn't long before you had labored breathing early that Sunday. We then started a whole new journey, one we weren't prepared for: a diagnosis that got missed time and time again during pregnancy and at the hospital after delivery. 

I'll never forget being visited by the doctor in the waiting room that day. It took a long time for them to come visit us and give us updates after first arriving on the floor in the NICU. We would later find out its because they were pulling out all the stops to save your little life. When the doctor finally did visit, she kept repeating slowly with a shake of her head, "he's a sick, sick little boy", her face grim, she kept looking to the floor and at her clenched fists in between bouts of eye contact. You could tell by the way she drew in her breath before speaking, and the shake of her head when using the word "sick", that it was not good news. Her body language told us that you could tell she wasn't sure how things were going to pan out, and in those moments I've never had my heart sink so deeply in my chest or feel so very torn to pieces. That feeling in my gut, those tears that came that day, I will never forget how it felt. I will never forget seeing others reactions to it, especially your Daddy's quavering voice and heartbreaking sobs as we have to call family and explain what's happening. Never again do I want to relive that, but it seems like it was just yesterday, it's still so fresh in my mind. 

We were finally allowed back to see you in the NICU, where we were explained more of what happened to you, and that it was indeed a heart defect that caused the issue. The cardiologist sat us down and talked us through it - telling us what it meant, even showing us pictures and diagrams to explain.  She was careful to remind us that your biggest issue wasn't just your heart, but if you would survive the next few weeks after being so near death. We were finally able to stand over you that evening and stare at you - but you remained untouchable for a couple days, because with each touch your vitals would fall and you were deemed "hands off". How hard that was for me is difficult to explain, but just when you want to comfort your child the most, we could not do so. But what we could do was pray, and that we did - joining hands over your little incubator bed, med pumps whirring putting 14 different life saving meds into you, all while in our tiny NICU room with countless friends and family that would visit us and we would pray over you, claiming power in Jesus's blood, speaking healing words, keeping the faith the best we knew how.

You my little one, have been through SO SO much in a short 365 days. You have seen roughly 4.2 months in the hospital - that totals out to 127 days of your first year. This includes a 3 month NICU stay, a month PICU stay, countless stays for gut issues/dehydration and not tolerating your feeds. You've been in cardiogenic shock, reportedly having seizures due to blood on the brain, more jaundiced than most babies while stooling white with liver issues, which landed us in OKC with a liver specialist and a near surgery to help with your liver issues. You've vomited feeds repeatedly earning you a G Tube with fundoplication, you've stooled blood countless times due to an undiagnosed milk protein allergy for the first six months of life. Two open heart surgeries are on that list, as well as almost every scan and test under the sun, ranging from a simple x-ray to sweat test for Cystic Fibrosis, HIDA scan, upper and lower scopes, Ultrasounds, MRIs, and gobs of echoes. You have been under anesthesia roughly 7 times, you have had 4 heart caths, a G tube and liver biopsy, a 13 day hospital stay out of state for your last open heart surgery and in one stay alone you got over 50 sticks in an attempt to get any sort of access to your veins. You have had central lines, multiple arterial lines, PICC lines, and had more cords and wires coming from you in those 127 days than I ever thought was possible coming from such a small body. You have a team of specialists and doctors that you see/have seen, ranging from cardiology, hepatology, opthalmologist, pediatrician, pediatric surgeon (for g tube needs), GI, nutritionist (shout out to cousin Emily!), and you just got discharged from the neurologist with a closed file!

We have been surrounded by amazing family, friends and prayer warriors getting us through this past year. They sprang into action, bringing meals, praying without ceasing, offering childcare, donating time, money, love. Visiting us in the hospital, offering continual encouragement through the journey, reminding us how great it will be to look back at what we survived. You have brought new friends and people into our lives, fellow heart moms and families, AMAZING nursing staff and doctors, people that we couldn't imagine how we would have made it through without them and their support. In fact, they are what make the journey bearable.

You currently have no teeth, a ton more hair than your brother EVER had (you have had three haircuts already!!), and more chins that I know what to do with. You have a G Tube and are primarily fed through that, since you just haven't shown interest in wanting to eat orally. Your smile is captivating, with a breathtaking little dimple that I can't ever seem to crawl out of. You speak one word to date, "da-da" and your Dad is quite pleased! You nap when you please, but usually not for long enough periods. We are working on getting a schedule but for so long we have been used to you dictating the rules that we don't know what to do! You are addicted to your pacifier and NEED it to sleep. You adore your brother and he is so sweet and gentle with you. You love to watch him, and are constantly observing his actions.

You are on five medications these days: Lasix, Enalapril, Periactin, Prevacid, and Aspirin. We are currently weaning the Lasix so that's exciting! You wear a size three diaper but due to your big belly I'm likely going to move you up soon if you keep gaining weight like crazy. You wear mostly 12 month clothes, we've been noticing the 9 month stuff is getting pretty tight. You weigh 18lbs and 4oz and your height is 27 and 3/4 inches.



You sit beautifully. You aren't able to put yourself into sit, but you can fall out. You lean foward to your knees to reach and act like you want to crawl, and as of three days before your birthday? YOU CAN CRAWL! You have to really want it - and so far you only crawl for two things. A TV remote or a cell phone. You will lay on your belly now, we are working on getting you to tolerate that.  You don't roll all that well but you can do it. You aren't a fan of weight bearing, but we are still practicing. Same with oral feeds and speech therapy. You don't quite understand how to eat or drink because you didn't for so long. You are definitely delayed in these modalities, but progressing. You'll get there!

As your mom, I don't know that I won't be able to set foot in a hospital without cringing and thinking of all the difficult times we have had. The familiar smells infiltrate my senses and I can identify each room we have ever been in, and what that hospital stay was for, or what news we might have received. I will always have little things that will remind us of our journey together, this emotional roller coaster that has given me more stomach drops, the constant painful wishing I could take your place, numerous tears, but at the same time so. much. joy! I want to take your place daily, and I realize this is such a good lesson. How God must have felt wanting to take His son's place on that cross! 

We are ever so grateful for the path we have been on, leading to new and beautiful friendships, a new appreciation for all that we have been given and most importantly renewed faith and respect for our amazing God and all of his blessings. Without Him, we would not have been able to turn you over so easily into the hands of others for care, or been able to withstand the negative news we were constantly given in those first weeks, or just to survive this year. Our lives were shaken and rocked in a way they never have been, and we will never be the same. You may be living with half a heart, but together we are whole.

I have learned to not take a single thing for granted. To recognize how each day is a gift. I have hopes and dreams and aspirations for you, but the most important thing I pray for is for God to use you, use your story, and for you to grow to know and love him. He has taken us further, higher, and deeper into His love and promises than we ever have been shown before, and we will always shout from the rooftops that the glory is to God. In the past year, TWO different times we were told you likely needed a transplant. Once for your liver, another for your heart. And BOTH times, God carried us through when we placed our hope in Him. You, little one, are a true work of God. 

Looking at you on the outside, sometimes I forget your half a heart, that you will always be different. But what a blessing to look at you now, and be able to do that. I really can't find the words to describe just HOW difficult this past year was. The almost losing you, the constant gagging, vomiting, psychomotor delays, hospital stays, blue lips, pooping blood, all the negative things. But now when I look at you, I see such beauty. All of God's promises wrapped up in a little 18 lb body. I pray that I will always remember His work in your life with every glance at you.

You are truly a miracle, saved multiple times by God's grace. You are stronger than I ever will be, still smiling and happy and I am so humbled and honored to call you mine, and to be your mother. I pray that I will guide you properly as you grow, that you will love with all of your 2 chambered heart - which is fuller and bigger than my whole, 4 chambered heart. Thank you for bringing our family together, teaching us about life along the way. You are simply amazing.

I'll love you forever; as long as I'm living my baby you'll be,

Mommy

11 Months: A Letter

Caysen,

We are so so so so blessed to be writing about your 11 months of life. You are getting ever closer to that one year mark and after the year we've had, I just can't believe it!

You are growing so big these days. You are 18lbs as of your last weight. You are on the chart finally for weight at 10th percentile, but apparently you are stil lagging on height as you are still only at 1st percentile. You wear a size 3 diaper, your clothes range anywhere from 6-12 months depending on the brand, we just started putting you in 12 month clothes and it fits in the shirts just fine, the pants are still a little large.

We are working on changing up your feeds.You were on a continuous feed until a few weeks ago. We dropped your over night continuous feed and have switched your feeds to bolus, but and recently just switched up your feeds to be four hours apart and bigger feeds. It's slow going but needs to happen. You like not being hooked up to your pump all day long and having more free time! (or maybe that's just mommy!)

In the past month you have decided to surprise us and drink a little by mouth, but usually only water and only when you want to. It isn't any certain time or thing that makes you want to drink it seems, and there's nothing that really seems to motivate you.  We are praying you will conitnue to want to eat by mouth, that you will enjoy it and just decide one day that you are ready to eat food. Right now, you just play in food, make a big mess, and hold it. You like to chew on harder foods like apple slices and chips, but don't prefer to eat much of anything.

You are getting stronger, and we are noticing some progress! When sitting you will rock foward and bear some weight through your arms. Occasionally you will fall to your stomach, and you don't hate it anymore. You will lay there, and sometmes you will ROLL OVER! I am so excited to annouce that you are now 11 months old and can roll over from tummy to back if you so choose! yay! We have tried to practice bearing weight through your feet and well, you just aren't a fan. We will keep trying!

Sleep. Oh is sleep ever elusive. You don't always sleep well at night. You wake up if you need turned (since you just learned how to roll, maybe that will change!) You wake up if you lose your paci, and more often than not you were waking up with gas issues and lately you were waking up because either your nap was too awesome or your stomach was really hurting (had a few days off issues of purple blood coming from your stomach). Switching to bolus feeds instead of the long feed and you actually seem to sleep harder. It has been really nice! Hopefully you will continue to improve in this respect!

We love that you are developing your personality and talking to us more, smiling and laughing and interacting. Your favorite games are Peek A Boo and Pat A Cake, making your dimple show without a doubt. You LOVE to watch your brother, you enjoy doing anything that invovles getting out of the house.  Car rides usually allow you to sleep, you enjoy coming to church and watching praise and worship with your ear plugs and serving with us - you are an excellent door greeter! You're quite the adorable little guy and tend to create a traffic jam at the doors when we serve!

We are just trucking along to your one year mark - happily watching you grow and progress now that you are s/p interstage. It's a thing of beauty, to look at you and realize just how far - you really have come! God has really outdone himself when he gave us you! Planning your 1st birthday gives me nothing more than chills thinking about the journey we have taken. This time a year ago I was having headaches and vision problems, slowly losing my eyesight while anticipating your arrival. Together we have gone through SO MUCH, and I couldn't be prouder of you!

Love you to the moon and back,

Mommy

Nine Months: A Letter

Dear Caysen,

Here we are, sitting in a hospital room in Columbus, Ohio approximately 9 days out from your second open heart surgery. Who would have thought that this is where our path would lead? Never in a million years would I guess we would have travelled this far, or ever had to step so far outside of our comfort zone.

This past month has been CHALLENGING. It started off with your brother getting RSV riiiiight before your surgery. If you were to have any virus they would have pushed surgery out, and you were a very sick kid yourself. You weren't tolerating any of your feeds, the amount of air regurgitation and vomiting you were doing on a daily basis was depressing. You had blood coming out of your G-Tube feeds and you were just miserable even on a slooooooow continuous feed. I'm unsure how we managed to keep you from losing weight, it was super tough. We sent your brother away for a week and I sanitized All! The! Things! to be sure that you wouldn't get sick. I held my breath and prayed you would stay well, and before we knew it, we found ourselves in the car on the way to Ohio.

You have been busy this month, you weigh about 14lbs and 13 oz, you are wearing size 2 or 3 diapers depending on if you are planning on dropping poop grenades. You wear size 6-9 month clothes but still have a smaller waist.

Since surgery we have changed our day feeds back to bolus. You are taking 140 mLs, 5 times a day and are working on increasing it. You are doing well with this, less air than before but still having some occasional issues. The main issue right now seems to be your stool. What is that stuff about?

A good few days before surgery you FINALLY started sitting up on your own. You still would topple over but you preferred to be upright. So adorable, I love that you like to be up and part of the crowd. Since surgery you have done even better and are pretty stable, I think sitting up on their mattresses in the cribs that are extra cushy really helps with that.

This month also brought about your first haircut. (Okay, maybe like your 2nd or 3rd haircut). You had a horrible combover going on and you needed your surgery mohawk. I must say, it really suits you well. You are super adorable and fierce, all at the same time.

Oh, Caysen, I can't thank you enough for all that you teach me on a daily basis about patience, trust and everything in between. This journey we are on has taken us so many places, meeting all kinds of amazing people caring for you, and learning everyones' story. You, Caysen, have an incredible story yourself, but as you grow older you will learn that you are not the only person out there. Everyone has a story, has a history or a hurt, something that they too have overcome.  I hope that one day we will get to return the favor to some of these people as we have had so much good shared with us.m Whether it be through encouragement, meals, prayers, or compassionate care, we will pay it forward without a doubt.

This month was one of the most challenging for me emotionally. Handing you back over for surgery wasn't an easy thing, and I could only think of how God must have felt handing over his Son to die on the cross. You see,  I wasn't handing you over to die, but to live. But that thought of giving you over and putting all my trust and faith in the Lord and letting it out of my hands, was so hard. As a Mom you want to control everything, and handing you over left things to be exactly the opposite. Such a good lesson to learn.

In the surgery waiting room that day, we made friends with a local couple who had a six year old having her first open heart, but she had a few other procedures as a baby. The family asked me, how I was holding up. Why wasn't I crying? I gave them my reasons, and explained God was going to take care of you. As they asked more questions about your condition and what that might mean for your future they said, "Aren't you sad? Isn't that hard for you knowing how his future may be tough?" And my answer is, yes and no. Of course it hurts, sweet boy, to think of all of your future challenges (But! look how far you've come!) At the same time, we are focused on TODAY. And the now, and each and every moment. If we get sad about what time we might not have in the future, I'll forget to enjoy this second. So? We won't worry. I can truly say Caysen, that going through something as difficult as that, was made better when leaning on Him. I hope that when your future does get tough, we can remember this lesson!

Just remember little C, God knows what is best for us, and has seen us through it all!

Love you to the moon and back,
Mommy

8 Months: A Letter

Dear Caysen,

Oh goodness, what a month it has been. We are so thankful for another beautiful month with you, and this month marks you turning EIGHT months old! 

You have kept us busy this past month, with continued appointments, feeding issues, and of course, being a happy little night owl (read: minimal sleep for Mommy!)

This month you weigh in right at 14 pounds and 8 ounces. We just upped you to size two diapers, and you are wearing six month and six to nine month clothes. Your height is around 25 inches and your kissable cheeks make you look like you are a chunky monkey.

Your hair is still long on top, despite another trim to keep it from falling in your eyes and face. Its looking blonder to me, but time will tell. Your eyes are still a darker blue, I've always thought they were closer to navy. 

This month you have had lots of issues with your feeds. We put you completely on formula while I cut soy and dairy, and after a good 3.5 weeks we transitioned you back to breast milk. You have TONS of air in there - it's just insane. If we don't burp you before, during and after the feed, you vomit past your fundo, crying the entire time. You've had flecks of dried dark blood come back out in your feeds as well. As the month has progressed the flecks have turned into chunks, and they have gotten redder. As a result, we have started Zantac and Prevacid, and are hoping for things to smooth out in that area. In other news, just being on the breast milk you aren't gaining much, really hardly at all. But we want to get your tummy troubles sorted before making more changes. 

You are smiling all! the! time! when you feel well, almost giggling. You adore watching big sister Pearl and you think your four legged friend is fascinating. You love to talk and scream and chatter right about 8pm, also your big brother's bedtime. It's simply adorable and I'm just glad you are around to chatter - so squeal away little brother! 

We have had appointment after appointment this month, the best news being a clear EEG so we are weaning our seizure medicine. Yay! As soon as you get home from these appointments your germophobe Mom completely strips you down, everyone changes clothes, and you get a bath immediately. We have to keep you well, because as of your eight month birthday there is only 19 days until your next open heart surgery! We are trying to keep you away from your big brother who has RSV as of four days before this letter. We are no strangers to doing things the difficult way - this shall be no different. ;)

That was another major development this month, deciding on a surgeon. I have always been more than comfortable with doing the next surgeries here, as I have complete faith in the doctors here and their skill sets. I have always prayed along this journey for our steps to be led and guided in the right direction. Somehow, by turn of events, surgery was not possible in town, and after having your chart sent to two different hospitals for opinions, we picked the one that we felt we were being pointed towards. 

You are getting stronger and better at tummy time. You can roll but stop as soon as you reach your sides, never completing the roll because why would you want to be on your tummy anyway? You still hate tummy time after all. You are getting stronger at sitting, but still need work with your lower back strength. 

Caysen, one of my favorite times with you, is letting you sit on my lap to play, watching you grin, and kissing under those ears of yours. I absolutely love to hold you and calm you, and to feel you relax and gaze up at me is the sweetest. You are into grabbing and pulling my hair, and have started using your tiny little hands to touch my face. You are simply amazing, and looking down at you and seeing pink cheeks is nothing short of a miracle. 

As frustrating as it can be, I love watching your routine before bed. Soon enough, I'll be missing having a tiny baby that would rather grin at me than sleep, so I try to soak it up. Once you get tired, you whine when held and want to be laid down. You fall asleep best laying on your right side, with your paci, in your rock in play. After a few minutes I can move you to your crib. You seem to have gotten used to this routine for some reason, and settle the best. I am not sure what will happen when you outgrow your rock and play, but I guess we will worry about that when we get there.

Oh Caysen, we are both damaged goods, and PTSD is no joke. I can't lay you on your back with strangers around without you bursting into tears afraid you're going to be poked. I can't move out of earshot from you during a feed, for fear you will cough, vomit and aspirate and you need to stay well. One bad feed with blood and air and we start to prepare ourselves for the worst, are you still allergic to the milk? Is something else wrong? It's never ending. We are both so fragile. But nothing compares to seeing you kick your feet and flap those hands around with the biggest dimpled smile when I approach. It makes it all melt away. You are such a little gift, and we are so blessed by you!

You are looking so big these days, and to think back on our journey so far - it makes each and every grin in our direction That. Much. Sweeter!

Love you to the moon and back,

Mommy

Caysen: A Half Birthday Letter

Dearest Caysen,

 

Can you believe we are here discussing your HALF BIRTHDAY? Oh, what a half a year it has been.

 

This past month you have spent at home after being discharged from the hospital the day after Thanksgiving. You have had some follow up outpatient appointments but nothing overly exciting and it has been SO NICE. Thank goodness for shiny new stents in your heart! We spent your first Christmas with you AT HOME. Granted, you slept through most of the family Christmas and you stayed away from extended family for germ reasons, but you were HOME! :)

 

This month you weigh about 12 and a half pounds, depending on the scale you are weighed on. You have tons of hair centered up top, it is still brownish, but lighter than when you were born. Your eyes are a navy color still - I'm wondering what color they will be! You wear size one diapers, size 6 month clothes for length. You are taking about 3 ounces of fortified breast milk by G Tube only since you decided taking a bottle was for the birds. Your day feeds are three ounces over the course of 2 hours and you get an extra long night feed.

 

You sleep from about 1030-730 on your continuous feed, wake up for a short period and then sleep again until almost 11. You are not so good at napping - and tend to want to be held to nap. Of course we are so busy hooking and unhooking you from feeds all day that once you are asleep you rarely stay asleep. 30 minutes is a good nap for you, but it's not uncommon that you would stay awake for 3-4 hour periods then get overly tired (read: fussy).

 

You have had weekly visits with Sooner Start and are getting stronger in that area. You are spontaneously reaching better - you just don't seem overly motivated for anything. ;)  You still don't roll, and you hate tummy time with a passion. You still don't have the back of the neck muscles to really hold your head up - thats what tummy time will help with. But you haaaaaaaate it. Overall your neck control is improving and we've been working on trunk control. It just seem so hard to make progress in that area when you don't take your feeds well and want to continually gag/wretch during them. You are getting fed ALL the time making therapy time difficult! Not to mention the cord we are attached to when you are getting fed continuously. But - we will get there. Eventually.

 

You still seem to have issues with air in your belly - and when you gag because of too much air in there - you will vomit past your fundo. This happens usually daily, if we can't get to your button fast enough. It's furstrating as we can tell it's painful for you, and yet there's nothing we can do. Plenty of times we can have you hooked up to vent - yet you will still vomit past the fundo despite having your Mickey open. Its awful to watch. :(

 

On Christmas Eve you decided you wanted to add blood to your poopy diapers. We are no stranger to this - and are changing things up in hopes to be able to troubleshoot and keep you at home instead of in the hospital again for the SAME thing in the past - where all they will do is send it off to be tested and confirm that yes, it is indeed blood. Oh, little c - I am so weary of this. So tired of hospitals, doctors, nurses and the little surprises you throw at us all the time. Is it so much to ask for peaceful time at home ya lil turkey?

We still have no idea what the future holds. When will your surgery be? Where? How will you handle it? How long will you be in the hospital? But all of these questions are trivial to ask repeatedly, despite that being such a human thing to want to do. I continually find myself remembering to pray for our steps to be directed. I don't know the answer to those questions, no one here does. But, I know that they have already been planned out and we just need peace to go where we are supposed to and to deal with what is handed out. 

The other day I was driving to work, and often times I use that time to get lost in thought and prayer. I was praying for you, for what is to come, as I was driving through some really thick freezing fog. It was blanketing the cars, the grass, and you couldn't see anything until you were right up on it. I passed through one intersection and before I knew it, it was COMPLETELY clear, all around me. It was such a strange thing, to be lost and without clear direction in the fog, to being able to see really far ahead, and clearly - all in a split second. It was so funny that I was praying for you when I realized suddenly the fog was gone. God was winking at me in that moment, reminding me that I may be confused about your bloody stools, about your heart surgeries, but it will all clear up. We will have direction. It's such a beautiful promise. 

Oh Caysen, your six months here on this earth have been intense to say the least. You have spent 100 days inpatient in your short 184 days of life. 54 percent of your days in the hospital! But you know what? 2014 is going to be our year. Our year for growth, promise and healing. We are going to learn that much more this coming year, go through even more ups and downs, but we rest in the comfort knowing we will be taken care of. 

I was rocking you the other night in your room after a particular fussy time - and it brought tears to my eyes. Tears because I know you are going through so much, and yet you can't tell us what hurts. Tears because you are so little, yet so big in so many ways. Because I realize how swiftly these stressful six months have gone, and how my little baby is growing. And I am SO grateful that you are here to grow! So thankful to reach a half birthday with you. I will forever be grateful for each smile you give me - each day, each moment. Love you bub!

Jesus Loves You Little C, and so does your family!

Mommy

Five Months: A Letter

Dear Caysen,

Oh sweet boy. Daily you keep us on our toes. I start writing these month updates early, so that I can post them on time. As I started writing this one, I couldn't help but question WHERE and WHAT your next steps are going to be.

This month has been stressful. You spent your first Halloween inpatient but got discharged from the hospital on the 2nd of November, and we happily took you home after being treated for what we thought was NEC. You tolerated your feeds great and you were doing well. You lasted at home for 8 days. The first five were fantastic!  You took your feeds by mouth, (Even finishing entire feeds!!), you took a bigger volume and in faster time and you tolerated it great. Then suddenly it went down hill and oh so fast. So fast that we had you back in the ER on a Sunday. What is it with that place and Sundays? I hate the ER, hate it. They didn't do the right thing the first time we were there, and I'd venture to say they didn't this time either, although this time was not near as severe as the first.

Anyway, in the span of two days, they poked the living daylights out of you trying to start and IV. You were poked in the head, hand, arms, legs, groin. At least 40 times or so. One of the nurses there, referred to it as "the massacre", which it really was the truth! The Child Life Specialist who gives out the Beads of Courage gave us 50 black beads to represent each poke, she wanted to be sure we covered them all. That's insane. Finally you had a heart cath and they got a central line.

The cath showed your pressures were questionable. The next day you got crankier and more upset. Before we knew it - you were in heart failure and they were intubating to give your heart a rest. Your lactic acid levels that are supposed to be around 1, were almost to 12. You were VERY sick, and it happened so fast.

I remember holding you outside in the sun in the unseasonably warm weather, that last day that we were home. Your Dad was putting up a string of Christmas lights, we were soaking up the gorgeous weather. I noticed the next door neighbor smiling at me as I held you in my arms, guiding your Dad to hang them straight. I looked down at you, knowing we were taking you in to the ER in just a few minutes, as you had missed your last feed. But he needed to finish up, and I needed that extra long warm cuddle in the sun. It's bittersweet, to remember those moments so vividly, and remember exactly what I was thinking during the moments of uncertainty.

Your stats vary this month. You are weighing in at 11.5 pounds or so, depending on how much fluid you are retaining. You are 23 inches, your hair is impressively long and people always ask if you were born with that much. The answer is no, but what you haven't grown in weight wise you managed to make that up in hair. You were wearing 3-6 month clothes - although now with all your lines and wires all you wear is your size one diapers. Your eyes are still dark blue. I think your awesome hair has lightened some at the roots, but we shall see. 

We sure had a roller coaster of a month. Going from being told you may need a transplant, to being told we have a few months before our next move (which is likely surgery), its a pretty wild ride. Boy, you like to keep us on our toes!

My favorite part about you is your dimpled smile. Its been a bit since you have felt well enough to show it, but it's starting to come back! I am so proud of how strong you are. In your five short months you have taught me more than I could have ever bargained for. I've learned about trust, strength and mainly patience. Who knew you were going to be such a good teacher?!?

This journey gets more interesting as each month passes, with the highest of highs and the lowest of lows. I want off the roller coaster so! bad! But at the same time, if that took me away from you - then I'll stay on for the ride. Someone just find me a barf bag, would ya? ;)

I am beyond thrilled that our steps continually are directed in the ways we should go. So often things seems questionable or scary but if we pray for clear direction, we are always clearly led. God is good Caysen!

We are hoping to be able to take you home for a bit. We have big plans to strengthen you, feed you, and most importantly cuddle the snuggles out of you. We can't wait, and despite all the unknown we still have to just rest and know that it will get taken care of when it comes. 

Love you to the moon and back,

Mommy