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.