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,
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