Saturday, November 8, 2014

A year ago...

Sunday Nov 10th 2013 we waited to take Caysen back to the hospital while chris finished up stringing his Christmas lights. It was a warm day. I held him in my arms in the warmth of the sun, thanking God for the beautiful day, while directing Chris what lights to straighten from the ground. Camden was with grandparents. Caysen was sick and we knew we would have to go back to the hospital, we were just delaying the inevitable and trying to finish up. We had only been home a week from our last hospital stay. He was still so little then, around 12 lbs, with so much hair. He laid across my arms so perfect, and the neighbors came home and smiled at me from across their lawn, glancing at him. He was of course hooked up to his mickey extension and vent tube through his g tube, but it wasn't obvious. I could only smile back at them and think "ha! If they only knew what they can't see". It is true, you never know what someone else is going through, what they may be dealing with. The complete oblivion they saw when they looked at me? I mean, everything looked perfectly peaceful and storybook.
At the time he was sleeping in my arms soaking up the sun and breathing my scent. But I knew where we were going within the hour. And I didn't even know just how bad things would get. At the time, he was rejecting pedialyte, crying non stop, not sleeping cause of his gut pain, and we were taking turns sleeping on the floor with him. We waited too long to get to the ER, cause that's when they had to put a line in during his cath two days later because they poked him 50x for IV access and weren't successful.

And now today. Hanging the same Christmas lights, on yet another warm sunny day almost exactly a year later. But this year he walks and almost scrapes his face when he falls repeatedly on the driveway. I look at my toothless sixteen month old, and think where we were when he was just 4 months.

Crazy. It is so nice to be able to look back and recognize that path. That the suffering is what was actually beautiful. The suffering is where we see God the most. And looking back on the suffering I see the blessings poured out, and see just how close God is. God is good!

Location:W Quincy St,Broken Arrow,United States

Thursday, August 14, 2014

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.

One determined pumping Mom

Thursday, June 26, 2014

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,


Wednesday, June 4, 2014

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.

Tuesday, May 27, 2014

11 Months: A Letter


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,

Sunday, April 27, 2014

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!

Thursday, March 27, 2014

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,

Thursday, February 27, 2014

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,

Monday, January 27, 2014

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, 

Sunday, January 19, 2014


Oh bloggity blog! I am so busy these days that I rarely get to sit and write and get all my thoughts and emotions out! 

We've been busy. It's three weeks into a new year practically. How does this happen? My word for the year is Trust. I asked Chris his word and he told me The same. Ironic, and so much so that I accused him of stealing my word first! 

My verse to go with it is Hebrews 10:23. 

Let us hold tightly without wavering to the hope we affirm, for God can be trusted to keep his promise. (NLT)

It's perfectly said, and a great reminder for this year and what is to come. Something that is continually a work in progress for me! 

Big stuff to come soon this year, including a big huge open heart surgery. Ya know, no pressure. Trust will be key! 

Here are some pictures to tide you over...