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

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

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

7 Months: A Letter

Happy 7 months Little C! 

I can't believe it has been another month already, time flies so fast these days! We are getting ever closer to needing your next surgery, which makes Mommy a little antsy. Ah, who are we kidding, a LOT antsy! There are so many things to do, and there is so much unknown. Your Mommy is a planner if you hadn't noticed, so theres a lot to do! We had it narrowed down to two hospitals, Saint Louis Children's and Nationwide Children's Hospital. After lots of praying and discussion we decided on the surgeon at Nationwide. He seems to have the most experience with your type of defect and first open heart, so we feel the most comfortable with that surgeon.

This past month has been so busy. We ended 2013 with the loss of a very dear family member, your Great Grandpa Allen. While he only met you in the NICU, I am so glad that he did get to meet you. It was a bittersweet end of 2013 and beginning of 2014, saying goodbye to someone we dearly loved.

We were ecstatic to start 2014 with you AT HOME. But unfortunately that was short lived. Before we knew it - you weren't tolerating feeds, you had SO MUCH AIR in your belly that we couldn't get anything in. After sleeping with you on the floor in your room next to us (well - Daddy did), and getting NO sleep, we made the call to your cardiologist to check heart function. Our last hospital stay it was said that not tolerating feeds was heart related, so we went to go check that out, ASAP, as we were slightly worried (read: panicked) that something was going terribly wrong. You were given the all clear from the heart standpoint, but we couldn't stay home with you not tolerating your feeds. 

Before we knew it we were back at the hospital in the same predicament we always are, with you being a super hard stick, no one able to get a line. We spent a few rough nights of them forcing pedialyte and you crying all night. Finally you got gut rest, got a line, they scoped, and found that you had a very "rashy" gut. After biopsies the results were consistent with a protein allergy. They started you on the most basic of all formulas and sent us home after a week with a sample can of formula and the flu. Yes, you read that right. We picked up some germs while we were there, and you tested positive for flu. Now that we have been two weeks on that formula we are just hoping your gut will heal up and tolerate feeds. You still seem to have ridiculous amounts of air that just breeds in there, so it's all very touch an go.

This month you are still barely on the growth chart at less than 1 percent all around. You weigh 13 lbs and 10 oz, you are 25 inches long, and your head is 34 cm. You are still wearing size 1 diapers, you are fitting into 6 month onesies, but are starting to get too tall for those. You hair is still amazingly puffy with body, and it still has curl to it most days. Your Daddy is still dying to trim it! You are sleeping so-so on your continuous feeds at night, you definitely have to be vented half way through, and you cry at times when you lose your paci or if you want to be turned. You still aren't taking anything by mouth, but we are trying to encourage you to put things in your mouth. (this is so backwards for germ related reasons!!). You enjoy your paci, you love chewing on things like my knuckles, washcloths in the bathtub, and stuffed animals. We are hoping that once we figure out your belly issues maybe you'll want to eat by mouth again!

You are doing better at tummy time. Even though we still do it inclined, you are definitely getting stronger. You have started to understand the point of your jumper and you love jumping around and playing with the toys. You have found your feet, and are attempting to take socks off some days. You are getting better and turning side to side on your back, and you are sitting up fairly well with assist. You have really started to notice Pearl, and you love to watch her. You are pretty happy go lucky, unless you are having issues with a feed or if your fur sister gets overly excited with her tail and whacks you with it.

You are down to 4 different meds right now. It's crazy, and almost weird to draw up only 3 at 8am and 3 at 8pm. It's a vast improvement from up to six each time!

We still find that we walk on eggshells with you. Every time you don't tolerate a feed, or are overly full of air in your belly, we get nervous. The last thing we want is you to get sick, or for there to be another heart issue. Again. You have made us far more cautious and concerned, and we find our conversations seem to always revolve around you, your feeds, your day, your attitude. Despite all this, you are our total joy. No matter how little sleep we get or how concerned we are, you flash us a little smile and you are forgiven a thousand times over! You can give us one heart melting coo and we are putty in your hands. We didn't sign up for this stress, sleep deprivation, and huge life changing decisions when thinking of you, but I know we would both say we wouldn't have it any other way. Nothing could make us love you any less, that's for sure, and we will always be there to fight for you, to back you up, and to encourage you. We love you!

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

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

Caysen's Dedication Letter

Dear Caysen,

Tonight we are dedicating you at church. A night we weren't sure we would ever have the honor to experience. 

Honestly, your Dad and I debated about whether this timing was wise or not. You are in a very fragile state - not tolerating your feeds well, and with your heart in a "band - aided" state that if you were to get sick, we would likely be back in the hospital after just discharging 16 days earlier. Those germs, those people with all their new germs, make everything so risky. But? We don't know what the future holds or where you will be during the next dedication. 

We decided this was far too important to us. We want to make this statement before our friends and family, we want to commit to raise you in a Godly home, teaching you about Christ and His love for YOU, and most importantly giving you back to Him.

And you sir, he loves you so very much! He has proven His love for you time and time again in your short five months. From assisting the doctors to save you on your third day of life, to countless surgeries, hospital visits, procedures and interventions. You have been through more than most children this age, and you are still here today by His grace.

Caysen, your Dad and I had such big plans for you. We had mapped out the way we were going to do things. But God had different plans. Bigger plans. He has great things in store for you. I have learned not to plan ahead much further than tomorrow, as God always has a different plan. But, it's a BETTER plan. These days I don't want much for you, besides for you to remain with us. I don't care what you do in your future, or what you are or are not capable of. Honestly, I want the best but when it comes down to it, I don't care if you grow up to be a successful businessman or a cook flipping burgers at McDonalds. I want you to have joy and to know Him, and all that He is. As long as you have that, I know you will be wealthy in more ways that you ever could need.

I want you to know on this night that we are dedicating you, how much we have learned from you. (And not just in medical terminology and diagnoses!) You have taught us more in your short time here with us than we have learned in our entire lifetimes. We have grown closer together, we have learned to seek and ask for help, and most importantly how to walk the closest we have ever been with the Lord. We can't thank you enough for strengthening our bond, our committment towards our family and most importantly our faith. We have learned that there are so many highs and lows, that sometimes it's a sickening roller coaster. But you would never appreciate the highs, if it weren't for those stomach dropping lows. Besides, it can be lonely at the top. But when you are low and leaning on Him, you find much more comfort than you realize.

I was thinking about your name the other day. We really didn't decide until the week before you were born if you were going to be a Corbin or a Caysen. When I go back and look up the meaning of your name, I find a variety of answers. "A variation of Casey", "pure" and "vigilant one". The last two particulary stick out in my mind. You are so young, so pure, so innocent and have been through so much. We have spent countless hours in the hospital, awake at night, praying and keeping vigil over you. The more I look back on it now, your name is just perfect and completely fitting for you.

I'll close with your life verse. It was hard to choose, as you have SO MANY verses that I use to think of you. The entire passage from Jesus Calling on your day of birth is one of my FAVORITE ever, one of the best reads that I go back and look on every time something comes up and I need encouragement. But I didn't choose those verses as your life verse. I chose the verse given to me by my friend Malissa, one that is fitting as it is the Psalm of your birth DAY and birth YEAR. I have included the verse after - because fittingly verse 14 discusses the heart. 2014 Is going to be a great year!

I remain confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord. (Psalm 27:13, 14 NIV)

We love you so much Caysen. We are beyond thankful for you and have been so blessed by you in countless ways. You by far are the most difficult, challenging and yet rewarding thing we have ever been given the task of caring for. We love you more than we could ever put into words.

Love you to the moon and back!

Mommy and Daddy

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

Four Months: A Letter

Sweet Caysen,

Four months ago today I had just delivered you by c-section; and with my world still grey and blurry, I looked down at you with your cute little dimple and wondered if I would ever be able to see the actual color of your eyes. Would I be able to see you grow, but in color?

Little did I know what was to come. It seems so selfish of me to have been worried about what I would see, considering all you have been through.  Ironic that I was worried about seeing, because I have seen more than I would have ever thought, and most of it being how God carried you through everything. These past four months have been nothing short of amazing. Looking back at how much you endured, I'm still shocked that you are here today. You really defied all the odds, without a doubt.

I love that you get to be at home now for the most part. We are so incredibly blessed to have your Cici (my mom), to take care of you daily. I know without a doubt it is the BEST possible care, she loves on you, I mean dotes on you, puts you through your paces with PT and keeps you as germ free as possible. We are SO fortunate that she QUIT A JOB, yes, quit a job(!) for us Caysen! All so that your mommy could keep hers for now. That is so selfless, and we are truly the luckiest in the world to have her! Not a day goes by that I don't think how special it is that we have her, and boy is she pouring all of her energy INTO you and our little family.

This month you have had a ton of appointments. You now have seven doctors to follow up with, that leaves us with about 2-3 appointments a week, plus Sooner Start visits. We haven't even followed up with one, she didn't want to see you until you're six months or so! We have been hitting up the cardiologist either weekly or every other week since being discharged from the hospital. It makes mommy crazy, she doesn't like all the germs from going out so much. Hopefully we will get through some of these appointments and can have a hiatus. You picked up a brand new doctor this month - an ophthalmologist. Your neurologist decided it would be a good idea to get things checked out since you have had brain bleeds. He was the second doctor to ask recently if your eyes had been checked, so why not.

We have had a couple Sooner Start appointments in the home. Oh my goodness, just a little bit of work and you are a fussy camper. You need it though, we have go to keep you from getting stiff and we need you stronger! Being hospitalized for the first 69 of 72 days of life, of course you are behind.

This month you are still wearing size one diapers, wearing mostly 0-3 month or 3 month clothing. You have really started to fill out! Your last weight was 11 pounds and 7 ounces, you are 22 and 3/4 inches. You are still getting your continuous feeds over night and sleep fantastic, and during the day we are still working on your oral intake. You eat the best half asleep and relaxed. When you are awake? Not so much. You get about 85mls every three hours. Four days before four months old we got admitted to the hospital again for GI issues. Pooping bloody red diapers and not tolerating your feeds. Your O2 stats started dipping lower and you once again are proving you didn't read the textbooks and are a little mystery. They are treating for necrotizing enterocolitis yet they don't think that is truly the issue. Time will tell, and we pray for God's provision through this storm.

You continue to love watching your brother, you are talking and smiling more. Your neck muscles are starting to finally hold up those heavy cheeks of yours and we are starting to finally tolerate tummy time  a little more.

Your hair is awesome, and I'm not the only one that thinks that! It's definitely your daddy's hairline, but you have so much body. You have so much more hair than your brother ever did!

So often during this month, I have looked at you and just stared in wonder. You have been through so much, and I am just in awe of you. If it's not one thing thrown your way, its another. But little boy, we take it all in stride. Just know that all of this is just to show us how great God is. This month people keep reminding me how God is good. Then others ask, if he is good, why do bad things happen to good people? Well, Satan does the bad. But God has continually poured out his blessings in your life so far, and we will continue to wait expectantly for his blessings and keep our faith so he will show us his faithfulness. We cannot blame God for Satan's evil. Just remember when you doubt, that fear and worry creeps in and God is wiling to give, we must just ask. And we are asking for continued blessings in your life!

You are a true miracle, it just amazes me when staff at the hospital come in and ask if you are truly the same baby from that terrible day. They always say "oh but he looks SO good!", and they marvel at you after what you have been through so far. You, sir, already have SUCH a testimony.

Love you to the moon and back,
Mommy