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!

That Trust Thing Again...

My thoughts have been swirling for the past few days, as it seems to happen after a discharge from the hospital. The whole stay went smoothly, but I was surprised at how much I missed two of my dear friends - one being Andi and the other a doctor friend who moved on to another state to practice medicine. I found myself reflecting back on the aloneness while in the hospital - feeling like those that I knew were in my corner were no longer there to "check in" on me, if you will. And the last time we were inpatient - I had just become close to Andi. At that time I didn't realize I was only going to have a short span of one year with her - but in that one year to be impacted in far greater ways that I could ever imagine. To be educated on so many things, supported in vital ways, and calmed with a level of understanding and expertise that was invaluable in our daily life.



Some days the void of her loss doesn't seem so black and dark;  or so deep and wide. But other days it's nearly impossible to crawl out of the expanse.









“For the LORD God is our sun and our shield. He gives us grace and glory. The LORD will withhold no good thing from those who do what is right. O LORD of Heaven’s Armies, what joy for those who trust in you.”

Psalms 84:11-12 NLT

This one verse right here. Been doing a lot of thinking on that trust word. 

I pray at the beginning of each year for a word.

A word that God wants me to focus on. One that I can learn to fully live by and focus on. In 2014 my word was trust. We had been through so much in 2013, and Caysen was SO sick, I knew that I was still learning to fully trust and grasp what it meant to do so. Trust was what needed to be focused on. Especially since Caysen's Comprehensive Stage 2 was coming up in March of 2014. I had to learn to fully trust in God's plan; the things I couldn't see. It was an incredibly tough year, but I thought I had picked up the meaning of the word. I felt that I lived it, breathed it and learned to completely trust Him with handing Caysen over for such a HUGE surgery. 

So this year, in January, I prayed again for my word. And I just could not shake the word "trust" again. I couldn't figure why I should have the same word, but each time I prayed, multiple times over the course of a couple of weeks, the Lord kept taking me back to that same word. Every. Time. 

Looking back, I know now that was God nudging me back to that word for a reason. He knew what was to come this year, that I would shortly lose my best friend Andi, and that it would be the hardest, deepest and most painful loss of a loved one that I had yet to experience. Sure, I've lost friends and family but it was different for those losses as it may have been expected or seemed like it was time. That was not the case with Andi. So sudden, unexpected and unfair to us left behind that it has been so very excruciating. This year likely holds a surgery we didn't expect to be quite so soon. The difficult decision to have a littler and younger kid do the Fontan surgery isn't an easy one, especially when there can be so many complications when they are smaller. God knew the difficulty of what was to come that I couldn't see and He wanted me to TRUST in Him, yet again. Because the tests this year have been bigger. Deeper. Requiring more strength.

And for crying out loud, that trust thing is the hardest to get a hang of. Trusting that Andi had bigger things to fulfill in heaven. Trusting that taking her now - someone so young, smart, full of promise and drive to help others. The most knowledgeable person I have ever met - that taking her now was indeed for the best. Trusting that the timing of Caysen's surgery is perfect for him and his little broken heart. Trusting that he won't get sick and we can do this surgery before fall and before sick season. Trust, trust, trust, in more ways than one. 

And just when i think I have it down, I realize that I might have wavered, or doubted. For trust walks hand in hand with faith. The faith that God will carry you through, that His ways are higher than our ways, that his plans for our future are better than we can imagine. Even when that involves heavenly plans for someone that we love dearly.

When you do finally fully trust in Him, it's like this verse says. He will withhold no good. Oh, what joy it is, to trust. So even though I'm still a work in progress at finding myself fully trusting, when one does succeed and see the blessings poured out hand over foot, or when you feel that comfort and peace knowing God has the future perfectly planned; it's like no other. And a little bit of trust, goes a long way. Once you start to trust Him fully with what you have, it becomes easier to give Him everything. And let me tell you, as difficult as it is - I KNOW, beyond a shadow of a doubt, I couldn't do any of this without Him.



God is good, even when I don't understand. God is good, even when I don't see a future - or a way out. God is good, even when I'm hurting, or when Caysen or my family is hurting. God is good. He relentlessly and beautifully cares for us so deeply, that we can't fathom what a joy it is to Him, when we trust him fully. Do you trust Him? You should definitely give it a  try. 

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

Nine months

It was just yesterday that I was dropping of my big boy for his first day of Pre-K. And here we are, finishing up the year and I have a Kindergartener on my hands.

How exactly does it happen?

I reflect on just how much he has changed in that span from August to May. In all reality, 9 months is so short - its just the time it takes for someone to have a pregnancy, the time it takes for people to safely lose weight, and its the amount of time it takes to get a copyright. In that time though, big C has had a birthday, a few good holidays and all the seasons in between.

When I dropped him off for his first day of Pre-K, he was still three. He was shorter, ornery, and huggable. He liked extra cuddle time, he needed help making every little decision and he was learning about his personal choices and consequences. He adored spending time with my best friend, Andi. She would come and play angry birds with him on the iPad, give him hugs and build marble tracks with him. He loved it.

He's so big now, the boy that made me a mom.

So opinionated. He moves so quickly, is tall, and is four. He's a great big brother, often sharing with his brother or pointing out the new things his brother has learned. He prays nightly for his friend Andi that he misses, and prays for her family. Every. Single. Night.

He is the most tender hearted, compassionate guy when it comes to his loved ones. He loves stairs, thrives on routine, and still is addicted to his morning sippy cup with milk. (Daddy swears the milk doesn't taste the same if you take the sippy away, so I guess it will stay for now).

Caysen has changed too. He went from just learning how to walk, to trying to run. He went from no teeth, to 12 teeth. (only 4 on the bottom!) He went from super short and barely growing to gaining inches. He went from barely talking to nodding yes and no, signing more and speaking more clearly. He went from crying at drop off to church nursery, to walking in and waving bye, as he's ready to play with their toys. He went from crying in swimming lessons to begging for more, wanting to jump off the side over and over.

I look at how my life has changed. I stopped pumping for Caysen in that time, dealt with another winter, learned how to shoot a gun, took on an intern at work, and Caysen got his first real sick bug, which was super scary for a bit because of course all the signs of sickness are also the signs of heart failure. I learned the importance of a good strong hug. I learned the importance of appreciating others. I learned that I desperately love thieves essential oil to help with any sickies. And, I lost my very best friend, in an incredibly unexpected and painful change to the story that I had pictured in my head. Through her loss, I gained a new best friend. I researched more than you would imagine about health concerns and HLHS. I cried more than I ever thought possible. It's hard to describe the changes that are so small yet they seem like something insurmountable, but really, things are just SO different.

When I think back to where I was in August, I NEVER would have pictured this road. The way things have changed. Doing life so differently than I was before, yet still so similiar.

God has a plan. He knows what he is doing, and He knows better than I do about what will come and what is to be. I have to trust in Him. Trust in the path he is taking us on. Trust that this road that we are taking, this one that I didn't picture, is indeed the perfect path.
God always has different ways of drawing us near, bringing us back to Him. In those moments when we feel alone, those most painful nights, God is closer than we can imagine. He is over everything, walking us through it, by our side. Like it says in Exodus 14:14 - The Lord will fight for you, You need only be still. And in those dark moments, he is fighting to draw you close.

2 years ago in May, I started having health problems while pregnant with Caysen, including loss of vision. If you had told me 2 years ago that this is the road we would travel and the path we would take, if you were to tell me all the things that were to happen to us in that time, including heart defects, open heart surgeries and traveling across the country for medical care; I would NEVER in a million years believe you. I wouldn't believe the people that have come into my life. In the same respects I wouldn't believe the ones that have gone WAY too soon, jerked so painfully out of my life that the hurt remains. I wouldn't believe the things we have seen and done, or the things we have put our kids through. It would be hard to fathom what we as a family could survive and endure; and how we could grow our faith like we have.

But God is good, and always good. We will shout it from the rooftops, just what he has given us. Best friends that save our child's life. (I mean, how many people can say that?) A child that we can look at and just appreciate how far he has come in a short time, that is nothing short of a miracle. Friends, family, and another day to share His great love, and to love each other. Take it all in, friends. If you learn anything from me, please don't miss that! Time here is short, be thankful for what you have loved, and for what you have loved and lost.

It can be so easy to wall off, close up, shut everything inward. But no, we are supposed to share burdens, love unconditionally and speak life into one another.

So thankful for the last nine months. For the growth as a family. When I reflect back, I am sure to cherish each step. Because in those 9 months I learned just how quickly life can change, and how short our time is here.

So...how are you using your time?



First day:



















Last day:

On Writing

Well hello there, it's been a while hasn't it?



Life has been so extremely busy, that I lost the chance and time to write. I didn't write Caysen an 18 month letter (mom fail), and I haven't been using my outlet of writing for myself, for my kids, for anyone to remember our journey.



Sometimes you just have to be in the mood to write. Sometimes, there just isn't enough time in the world, to sit down and say what you want to say. The words you want to write that you feel inside just don't fall out onto the keyboard the way you like or hear in your head.



I have written lots of letters, summaries, stories for both boys, our families struggles, all on this little old blog. Usually they are fairly easy to write, to tell and to express.



But a few weeks ago, I was given the beautiful opportunity to write for my friend. The chance to speak at her funeral was one that I knew I wanted to do, no question. The hard part? The hard part is the writing. How does one, with a heart so incredibly full of love and words and adjectives, summarize the best friend they've had into a short little speech that explains what her life meant to you and your family? How is that even remotely possible?



It wasn't an easy thing to do. I started over many different times. Deciding what to say that could adequately explain what she meant. I think I did a good job, yes. But I think with more time to heal, more time to deal with emotions, I could come up with a novel.



As I sit here while I type this, my sweet little half of a heart youngest son, Caysen, sits in my lap. He lets me play with his extremely cold, blue hand and I kiss his hair, he looks at me with his yogurt stained face, watching the tears slide down my cheek, and he tries to understand what that means. He doesn't understand tears, and searches my face for what I'm feeling. And what I'm feeling is that I still can't believe the journey that our family has been on.



The very journey that Andi played a HUGE role in, and that I will forever be grateful.



The hardest part to accept - is that she is no longer here. I can accept and know that she is safe, healthy, not in pain, hearing without hearing aids, and will be waiting for us in Heaven when we get there.  I feel that she was saved from something worse, more than we could ever think or know because we aren't God himself, and only he truly knows. I know that God took her because that was the best option for her.



But, the hard part is that she IS NOT HERE. She isn't here to watch my boys grow. To see Caysen get big, after all she did for him. To know the role she played. She is not here to talk me down from the proverbial medical ledge with a corny joke or funny story; when I'm stressed out from germs and lab results and upcoming heart caths and open heart surgeries. She isn't here to continue doctoring, to finish what she started. To finish what she had such an amazing drive and determination to complete - despite having every POSSIBLE and potential thing she could have to make things more difficult. (hello - have you ever met a deaf doctor - that was still a total bad ass? Have you ever met someone living across the country from her husband and still one of the bubbliest and funnest people you have ever met?). Yeah, didn't think so. Because despite the odds stacked against her, it made her more determined, more confident that she was doing what she was supposed to be doing.



That is such an admirable thing. To know, without a doubt, despite the troubles and hardships, that God has put kids and medicine on your heart to do, despite every road block. I pray when God speaks to me that I will always be so obedient.



A wise friend told me, which knocked the wind out of me -- but she said that she would never, ever consider bringing Andi back and taking her out of the grasp of our Lord and Savior. She said she couldn't be that selfish. The more I think about it? So true. When we are in His presence, it will be such a powerful thing, so awe inspiring, that we won't even be able to stand upright. We will fall to our knees as His greatness renders us speechless. How could I take her away from that? What a great and beautiful thing, that she is up there happy, healed, whole, with all of the loved ones who went before her, patients she cared for, and her grandmother that she spoke so highly of.



I think about her often. I think about her husband and family. I know that if I am hurting, they are hurting a thousand times over. I pray they find peace in the Lord, their Savior. I pray they know, they see, His glory and his goodness. I pray that they turn to Him, as there is nothing, NOTHING, Andi would want more, than to spend an eternity in heaven with her family and loved ones.



It doesn't take away from how hard it hurts. Tonight, at bedtime, Camden and I were saying his prayers. He prayed for Andi and her family, and said "Please help them to not be sad and to not miss Andi while she is in heaven". Then he turned to me and asked me "Mom, were you Andi's friend?" I answered yes, and he did something he never had before - He prayed "Please help Andi to not miss Mom too much, and for Mom to not miss Andi". He was hugging me in the same way Andi would hug me, standing high enough so I could hear his heart. I always took comfort in hearing her heart beat, strong and powerful. I would always pray that Caysen's would sound as strong as hers. But at the same time, it was all so bittersweet.  I realized I don't get to listen to her heart anymore. Physically or emotionally. I miss physically hearing her heart. I miss knowing what's on her heart. I miss that simple comfort.



But because of her, I have THREE hearts in my family to listen to. To savor. To love on with my heart. Like I have said before,  she made our family whole.



We both said, and I even have it in her handwriting, that God knew what He was doing when that pharmacy messed things up. Him bringing us together was a gift in more ways than we could ever count. Thank you, God. For your goodness you bring to our lives and allowing this angel into ours.



"You, dear children, are from God and have overcome them, because the one who is in you is greater than the one who is in the world". 1 John 4:4

Dear Pump: A Letter

Dear Faithful Medela Pump,

This milk bar is officially closing. 

It's bittersweet, really.

Unless there is some large change of plans in our family planning, we are likely at our child stopping point. I was always open to three, but Caysen has been quite the doozy. I won't say that I wouldn't ever want others, but at this point I'm just relishing in Caysen and all that he is. I am slightly mourning the fact that my breastfeeding journeys were never what I had determined they were going to be.

As you may know, my breastfeeding journey with Camden wasn't quite what I had prepared for. He nursed, but wasn't so great at it. His latch was weak, and he was the SLOWEST eater (and still is to this very day), which wasn't kosher for pumping or returning back to work after 11 weeks. Once I did return to work, drinking from the tap eventually ended, and it was a relationship with the pump and I, and I managed to exclusively pump until he was 13 months old. I didn't mind it, doing what is best for my child is of utmost importance, and it was something I wanted to do.

With Caysen, I was even more determined before his birth. I made sure my milk came in as soon as I could get it to, supplementing, pumping in the hospital - despite the fact that my newborn spent the first 12 hours in the newborn nursery. I had read up on breastfeeding, gotten ideas and advice. I made sure to meet with lactation consultants in the hospital after he was born, getting all the assistance I needed from holds, to how he was latching. He was showing more progress than his brother, but I still used a SNS to help encourage him. I was armed and ready and excited for the journey.

Things came crashing down on day three, and I did good to even remember to pump that day and thereafter. I kept going at the prompting and encouragement of some NICU nurses and family members. They made sure I was drinking my water, friends brought me lactation cookies, and I trudged along. 

I kept having horrible thoughts cross my mind, "if he dies and I'm still pumping milk, will I be able to handle that?", "why pump if he can't even be fed?". I wasn't sure what I was doing, I just knew that I had nothing else to do while sitting in that NICU room the first few weeks and crying. Might as well make the best of it, right?

As my hormones leveled and I became clearer headed, I began to have a sense of determination. There lay my baby, covered in wires and tubes and unable to be held, but there is ONE thing I can control, and it's what he eats, when he gets to eat. And I can give him what I feel is best.  I timed things like clockwork, pumping every three hours, setting an alarm to wake up at home because I didn't have a baby to wake me. I was going to do this, and it was going to be what he needed.

Come January, at 6 months old and after lots of extremely bloody stools, multiple inpatient hospitalizations and one GI scope, we had the diagnosis of milk protein allergy. This meant formula. All that hard work, and they wanted me to do formula? 

Nope. I allowed it for two weeks while I went dairy and soy free to accommodate him. I didn't make it that far, throw out that much stored dairy filled breast milk to just stop now. I remained diary and soy free for 4 months, and have been dairy free for almost nine. It is one of the single most hardest diets I have ever done, having to read ALL the labels, not eat at certain restaurants while the rest of the family chows down. It has taken more self control that I ever realized possible, but you know what? 

I wasn't going to quit. I wasn't going to stop, not because of some dietary restriction. I was determined to give him what was best, he already had so much difficulty with GI and digestion issues, I wasn't going to change my mind. I was one determined Mommy. Every three hours, hooking myself up to that darned pump, forgoing sleep for the last almost 14 months to do what I felt was the best for him. He's a little fighter and deserved as much help as I could give him. 

It's come to a time where he can tolerate soy formula, and after almost 14 months, it's time to put the pump down. Caysen is growing beautifully, and his diet is consisting more of foods and not just milk. 

Throughout this terrifying and scary journey I would hear things like, "how do you do it?" and "You are so strong". The truth is, I'm not that strong. You just do what you do, when you feel like there is no other choice. I took it day by day, hour by hour. I had no control in most anything, but that. THAT was something I could control, and once I decided to, you couldn't stop me. It was a first big step in continuing to move forward. I could pump for him. I could wake up each day with my baby in a hospital. I could make it another day, another week, another month. It was the first step in the journey to realizing what I CAN do.

I hate you Medela pump. And yet, I love you Medela pump. So much of my time and family is tangled up in the tubing of that pump, but it's what made feeding my son's possible. You got me through NICU and PICU stays, two open heart surgeries, and countless nights alone without a baby at home. In those moments that I would wake up in the middle of the night to pump, I would use it to pray for my baby still in the hospital, in the care of nurses, before calling for a middle of the night update if I could possibly stay awake. You got me through physical and emotional pain, and to no longer have regularly scheduled meetings is, like I said, bittersweet. 

Thank you pump, for allowing me to do what I felt convicted in my heart was best for my boys and family. Thank you for allowing me to still feed my babies breastmilk. Thank you for always being there, accountable, steady. Thank you for starting me on the journey of realizing what decisions I can control, and helping me through the difficult times. Without you, this journey would have been completely different.

Signed, 

One determined pumping Mom

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

Exhaustion and Grace

Oh goodness, how nice it is to be past Interstage and to be semi-functioning like a normal baby. It's so nice to not have to worry about the germs of winter, the dehydration of not tolerating feeds due to an unhealthy heart. It's been a trying year, and no one can know the journey until they've walked it.

 

I think the most frustrating part is that he still is delayed. Still behind in areas that continue to cause lack of sleep. He still doesn't turn or sleep well and isn't so good at self soothing. He wakes us up more times in a night than I can count. But, he's so much healthier now that this shouldn't be taken as a complaint, overall I know that I am more blessed than I could even begin to put into words.

 

When I look back on all that we have been through the past year, I am amazed at how far we have been taken and how much we have survived. By the grace of God we did it, and with Him we made it through.

 

I have been pushed to the limits, mentally, physically, emotionally. Sleep deprivation is scary and tough, and it is still a struggle.

 

People look at little C now and think it is all fine and dandy. He looks good, so things should be easy, right? Well for the most part, it is. But, I still need that little bit of grace. That leeway. It is still hard to not get sleep, to make doctors appointments, to realize that each and every PTO hour of a total of almost 12 weeks in the past year has not been spent on vacation or at home snuggling a new baby but around the whirring and beeping of feeding pumps, ventilators, monitors with nurses talking, that time has been spent at a hospital or visiting a doctor. That's NOT vacation.

 

And I know without a doubt it's not the way anyone else would choose to take their vacation. In short, I'm tapped out at times. I'm tired, I'm exhausted, and doing my best to not burn out. It just seems that people forget how hard the past year has been, how hard I have worked to juggle all things Caysen and doctors appointments, hospitals, family, a left out big brother, a husband and a fulltime job. It has literally been, without a doubt, the HARDEST thing I have ever had to do.

 

So even though things are going well now? I'm still asking for that little bit of grace. I'm still trying to catch my breath from the marathon of the past year. Is that too much to ask? I think it's not.

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

10 Months: A Letter

Dear Caysen,

What a month we have had! We spent the first four days of this month finishing up our inpatient hospitalization in Ohio. We discharged on the last day of the month of March and welcomed April in happily with nice warm naps and sleep in our own beds. It was fantastic!

Since we have returned from surgery we are in awe at you and how much better you seem to be feeling. You are digesting you foods at a rate of 135ml an hour. You sleep better, still not perfect but better, for sure. When you wake up now it's for turning or because you lost your paci. At least it's not to wake up to vomit because there was too much gas in your belly! We have followed up with your many an specialists as it has kept us on our toes - thats for sure! In other news our cardiologist is thrilled with your progress. We are working on getting your healthy and bigger and getting you used to your new blood flow. Many of our specialist visits won't be for a few more months, we are finally starting to space things out.

You weigh in at 16 pounds, 9 ounces and are 27ish inches tall. You are wearing size three diaper, it seems as if we just skipped right on through the size twos. You are wearing 6-9 month clothes, you still have a fairly small waist. You are still getting 5 bolus feeds a day of 140mL, but at the 5 o'clock feed we let you play with food and work on feeding before starting your feed. You are doing better at putting new foods in your mouth and trying them, hopefully soon we will have you snacking away!

You are developing well, we are continuing with our Soonercare and are getting stronger! We are putting you through your paces daily. Diaper changes we work on rolling. We practice sitting ourself up using our hands and reaching. We are working on tummy time over the boppy or with rolls and trying to show you that you can get yourself out of that predicament. We work on putting you on your hands and knees to get stronger, and even bearing weight through your feet and trying to get used to standing. We work on talking/babbling and even wanting to play in food or bring it to your face. Little by little we see improvements every day! We can't wait until you are eating better by mouth, it's so hard to be patient because it is such slow process so far. Praying for improvement in this area!

Our big development this month was failing a hearing test that was given by Soonercare. They come out to the house to follow up on hearing and reassess, and they tried for two different months to get accurate testing on your left ear. There was fluid on your left ear for quite some time. Finally the fluid was gone, but your test showed that you failed 3 out of 4 frequencies. We have our appointment tomorrow to be further evaluated.

This month you had your first Easter! Your first official family gathering. We have taken you on lots of walks, gotten you outside and in some fresh air.  You are loving your new found freedom, and I can only hope that we can continue to give you more freedom and yet keep you well!

You have developed a severe attachment to me, and Daddy as well. If I turn my back on you and move around in the SAME room as you, you begin to cry. Leaving the room? Out of the question. I know this is a normal thing, but I can't help but think it's made a bit more severe after all you have been through!

We are so busy and so blessed by you. I had a surreal moment earlier at my in laws house. I was the only one inside, everyone else was on the back porch, sitting in the porch gliders and playing and I happened to glance out through the blinds and the sight took my breath away. I couldn't help but remember back to last summer when I was sitting in those same gliders after taking my once weekly hospital break to spend time with your big brother. You were still in the hospital after your first open heart surgery, still with lots of complications. I remember wondering if you were going to make it to enjoy a summer with us, and what it would be like. So when I saw that sight tonight, I had to stop and thank God and count my blessings. How lucky I am to be your mother, and for you to be here with us each day! God has really walked us through and I love the little reminders like that of just how far we have come!

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