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,
Mommy



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,
Mommy





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, 
Mommy





Sunday, January 19, 2014

Randomness...

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...







Sunday, December 29, 2013

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






Friday, December 20, 2013

Half A Heart

Another tearjerker of a heart poem/story while we are at it: Author - Unknown.

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. He asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."

Wednesday, December 18, 2013

What's it like?

I saw this poem the other day and had to post it as it is so perfectly said! 


What is it like to have a child with a CHD?

It's Lasix, Aspirin, Enalapril....
It's wondering...Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held him...(I'd waited so long)
It's knowing that I need...to help him grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking his sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping
It's heart caths, x-rays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do his nails look blue?
It's cringing inside... at what he's been through.
It's dozens of calls to his pediatrician...
(She knows me by name...I'm a mom on a mission!)
It's winter's homebound...and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching him sleeping...his breathing is steady...
It's surgery day...and I'll never be ready.
It's handing him over...( I'm still not prepared...)
It's knowing that his heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying...it's hoping...that he'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected...
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching him chasing...a small butterfly...
It's the moment I realized...I've stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we're all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.