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

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."

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.

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

Transparency...

***I'm going to be transparent here. I'm going to write things down that I need to get out, so I can remember what I was thinking along this journey. Even if it means staying up late and getting less sleep, I still want to write it out. I want to remember that I'm still human, and to remember my raw feelings and emotions. They are still valid feelings that I have, and even though I know we were destined to walk this path and we will be protected and taken care of - I am still human.***

 

 

 

Sometimes I just want to fast foward the time. I want to be over and done with the next few surgeries. I want to know how Caysen is going to be. I want to know when he will be able to sit up, roll over, etc.

 

It is hard looking at other babies and seeing them hold their heads up, or hearing of friends' babies who are younger than him and are rolling over. Ouch. It really makes his delays that much more apparent. I tried the other day to get him to push back with his feet and "stand" on his legs with my hands supporting under his arms and around his upper body. No dice. He folds on top of his legs like a wet noodle. It raises questions in your mind, questions that you don't want to answer to, yet you can't seem to push out of your brain. Is that part of his little brain damaged? Will that ever work?

 

While we were in the hospital we were asked if he draws his legs up when he uses the restroom. I told them no. I had to explain myself, "he's delayed, so it's hard to say". I get tired of saying that. And, it's so hard to be patient. To see if and when he will reach those milestones.  Then I think about the next surgery. The "Big" one. The hardest. The one that will continue to set us back. The one that has the least success rate.

 

I am ready to be done with that surgery, and yet I dread it at the same time. So much difficulty comes with it - and he's still such a mystery. We can only hope and pray that he will go into that surgery as healthy as possible. Will all of his other "issues" get figured out well enough?

 

I guess I'm just tired. Tired of waiting. Tired of only getting 4-5 hours of sleep a night. Tired of pouring all my energy and everything I have into my family and housework and things of those nature - and still not having enough to go around. I'm tired of working in a place where people come in for treatment daily just because they don't want to exist. The irony isn't lost on me that I work with people who no longer want to live - and then I go home and fight like you wouldn't believe for my little boy who I WANT to live a very full life. Don't those people know what they have been given? Life is so precious. Others complain about a stomach bug or a common cold going through their family.  I can't even begin to describe what I would give for that to be my biggest concern. They're worried about a tiny fever in their baby, whereas my life is consumed with oxygen saturations, feeding pumps and medications. Shouldn't people be more grateful for the blessings they do have? Hearing people say and talk about things like that? Tiring. Just tiring.

 

It is sometimes so hard to appreciate the small victories, to look at him and realize how good he looks and how far he has really come - when all of that can be overshadowed by the path ahead of us. It's a very gloomy and foggy path with no real direction, one that you wouldn't want to travel down by choice but you have to because its the ONLY way. And it seems like you're walking backwards sometimes, because you're moving so slowly.

 

Daily, I have to remind myself to appreciate the small victories. Tummy time that didn't end in horrible tears. Smiles from the little guy. Tolerating one of his feeds like a champ. If you don't cling on to those little things, you drown in those bigger and scarier things. You have to remember to take it one day at a time. You look too far ahead and you get overwhelmed. Like the way you feel when you are on top of a really tall high dive and about to jump. It seems so easy - until you look down and see how far you really have to go. It makes you want to back up, change your mind, cower around the edges, or not even jump.

 

Unfortunately, we have to jump. We have to take this path. And as much as I want to see the future, I also don't want to wish away this sweet little baby. He is so precious, so incredibly strong, and such a little miracle. Looking at him, I am reminded daily of God's grace. What Satan tried to use for evil, God has worked miracles in and through him. So, despite the fact that I am tired, I am weak, I am so! over! it! - we are truly lucky to have the opportunity to walk this journey. We are blessed to still have Caysen, and to continually learn each day what it means to have such a wonderful Savior.

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

Midweekish Random Things

It's been a long time since a random post. So, here goes nothing.

-I miss working out. Before Caysen I had grand plans to return to the gym after about 4 weeks, like I did with Camden. HA! Zumba and I better have a date soon.

-Because life is SO hectic right now, my eating habits are POOR. I am going to have to get some stuff together like crock pot meals or something so that I am eating a bit healthier. All of us need it really.

-Age Three. OH EM GEE. Enough said.

-Work is so hard for me to keep up. I do not even have a second of down time, besides my pumping time. I've learned to pump and chart. TMI? Maybe. But it's doable.

-I am tired. I average 5 hours of sleep a night or so. I think it's just my new normal and my body may be getting used to it.

-I think Camden may be on the verge of being potty trained! He is FINALLY getting number 2 down after issues and regression after little c was born.

-Thank GOD for my mom. Can you believe how much she has given up to help me/Caysen out? Amazing. I'm sure I'll have more on this later.

-My iPhone is dangling by a thread. Just barely hanging on. iOS 7? It's like a bad acid trip.

-I still think Camden needs gymnastics or some sort of event to look forward to. He's wearing me out, but with as much as we have going on I think one more thing on our plate and we might break. Or break something at least.

-Our families are amazing. SO SO SO glad we live nearby. It truly takes a village!

Maybe next time I'll have a post of more substance. Can you believe October is flying by? It shall soon be time for Caysen's big surgery. Slow down Father Time!

Three Months: A Letter

Oh Caysen, where to begin.

We have had such a busy month this past month. The first part of the month was spent still in the NICU, trying to problem solve your yellowing skin. When they hit a roadblock, they discharged us from the local hospital here and sent us two hours away to the Children's hospital in the bigger city, that has a liver specialist, the only one in the midwest. The hepatologist saw us at an appointment and decided from there to admit you. We were admitted on a Tuesday, and by the grace of God we discharged on Thursday. We went in thinking you were going to have a repeated liver biopsy, and a procedure called the Kasai procedure to move your intestine directly to your liver as they were thinking you had a condition called biliary atresia. We were told biliary atresia is 100 percent fatal if not treated, and it was critical to have the best success (read: no liver transplant) was to get the Kasai procedure done before the three month mark, and you were two weeks away from three months. You were ON THE SCHEDULE for surgery as of Wednesday, they had even written npo orders (nothing by mouth after a certain time). That's how close we were to surgery!

But then you decided to poop brown. And your lab values went down. And they sent us back home! We went from being on the list for surgery, to being kicked out!! How amazing is that? God is so good Caysen, and we see his faithfulness with your journey DAILY. I have been told since then, that seeing direct bilirubin levels go down that fast is uncommon. That, sir, is God!

After coming back home, we started going to a multitude of follow up appointments. Met your pediatrician, (she's SO super nice, your brother just LOVED her too!), had another echo, got some more lab draws done and have just enjoyed trying to fatten you up at home.

Your cardiologist noticed your lower oxygen saturations and noticed your ASD between your two atriums is closing up, so he took you to the cath lab to put another stent in your heart to buy time before we have this big heart surgery. This was done three days before you turned three months!

Again, we see God is ever faithful, as I was praying hard for a clear direction for the doctors as to whether they would have a stent placed, or if they would go ahead and do the Norwood. It sounded like they may consider just going right ahead with surgery. Well, guess what? The surgeons were out of town during the conference to make a game plan, so our decision was clear!

This month you have grown so much taller! I wish I could say you are a little chunker, but you just aren't there yet. You weigh 10lbs or so, you are about 23 inches tall. (I think she pulled you too hard when she went to measure you. This puts you at 50 percentile for height, and 2ish percentile for weight.

You have SO much hair. It looks curly sometimes, and it's just adorable. Definitely still have your daddy's hairline! Your eyes still look grey-ish to me at times, more often than not though they look dark blue. You are smiling more when awake, but because of your inefficient heart you sleep A LOT.

You love to watch your brother, to watch anything with color like your brother's cartoons. You don't like to have gas in your belly and require frequent venting through your Mickey button. You sleep almost all night with your continuous feeds going, and you rarely cry unless you need to burp, or you decide you may be hungry.

You are wearing 3 month clothes, but only because of length. You wear mostly footy pajamas, because it's the easiest to work with the mickey button. Your diapers are a size one now. Before placing the stent, you were breathing faster and your O2 sats were lower, so you could barely take anything by mouth. I'm talking like 8mls (remember, 30 mls is an ounce). Since having your stent placed, you can take at least the ounce, sometimes a little more. We are working so hard on getting you to hold your head up, pull your hands to midline and to tolerate tummy time. You qualified for Sooner Start services based on your delays, which is good because we will take all the help we can get! You love your swing, it really seems to calm you. We love that you are looking around more, taking in your surroundings. And the daytime smiles? SLAY. ME. You can have anything you want kid, just flash me that smile! ;)

Little mister, we continue to see God's ever faithfulness each step of the way. We claim His healing and protection over you as we continue on this journey. We are so lucky to be on this path with you, as you continue to teach us with each passing day. We have learned so much about ourselves, each other, and our walk with the Lord. We can't thank you enough and we love you!

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

Caysen: Two Months. A Letter.

Another roller coaster of a month has gone by, and you are continuing to grow and change before our very eyes.

This month the roller coaster started out with a warning from one of your neonatologists about your brain. We knew there was a significant bleed, but had never been told that the ventricles were swelling. In addition to that information they discussed the possibility of needing a shunt placed in your brain. 

After more waiting and testing and even more praying, we were told the ventricles were decreasing in size and the blood was clearing. Another example of God's healing through you and how beautiful it is! 

In this time you have also gotten a G a tube for feeds, since you just couldn't keep up. It's a lot of work eating all the food they want you to eat! Its hard for you to keep up with how many calories you need and how many you burn with your little heart working overtime! When you had the tube placed they also checked out your other organs and did a liver biopsy since you have been stooling white for a week. White stool means absence of bile, which is backing up in your body. You are noticeably yellower/tanner these days and that is what we have to figure out! 

You are continuing to be more awake, tracking things, even a few awake smiles. You are supposed to get 70ml every three hours, you are on five medications. You still rarely cry. You weighed 8lbs and 9oz at two months and are 22inches. You are still in newborn diapers, wearing newborn and 0-3 month clothes. 

Mommy had to return to work this month. It has been so hard, having your heart in multiple places. I just want to sit with you, be with you and work on getting your food taken by mouth.  I have had to learn to give up even more control than what I had, and being away from you is so hard. I know you are in good hands though. 

Caysen, I don't know how to even put into words how much you have taught me in your two months. You are a lesson and a reminder to me daily how precious life is, how important it is to savor every moment, every breath, every feeding, etc. Each new day is a reason to celebrate that we have been graced with another sweet day with you. You are our sunshine, our hope and joy, our testimony that God is so so good. 

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

Mommy

My sister thinks Caysen has a striking resemblance to Cam from Modern Family. I'll admit - I do see it! :)

Camden, Three Years. A Letter.

Wow. Three years? Is that even remotely possible?

You have changed so much this year. You are smart, spunky, string willed and so very sweet.

We spent much of the past year preparing your two year old self for your biggest life change yet - adding a brother. We talked about it so often that I think you were truly ready. We prayed for him nightly, and we would talk about sharing toys with him and giving him your old room. Now that he has spent the first of his life at the hospital, I'm not sure how much of it you "get". But you will ask to hold him. We don't push you, we wait until you ask. And when it does happen it's pretty heart melting! I can't wait to really see the two of you together. 

It's amazing how much you pick up these days. You are too smart for your own good. You have been spending extra time with your grandparents, whch has resulted in you complaining of your back hurting. You told your daddy the other day you were "going to go have coffee with mom and dad", which is what your grandma does on weekdays before work.  It goes to show you are listening when we don't think you are!

You talk SO SO much. You are adorable when talking, you can't say your Ls or your Vs well, but we are getting there! You love visiting brother in the hospital, and you love spending time with your cousins. 

You are wearing size 2T an 3T, despite the 3Ts being a little baggy. We finally got you to wear flip flops this summer. We have noticed your size 6 shoes are getting tight. You still love pouches, and are mostly potty trained. You told us not too long ago that you are afraid to poop on the potty. Here's to hoping that doesn't last too long! 

You are a good sleeper, and you still don't leave your bed without calling us to come get you. Despite having your world turned upside down with brother in the hospital, you have adjusted fairly well to the new routine, and can still nap with the best of 'em. 

You love practicing your flash cards with daddy, playing in your sandbox an demanding you get your way. 

Camden, you are still our first little blessing, the one who made us parents. The one who teaches us day by day more than we could have expected. We are so proud of you, and so thankful that God lent you to us. If there is anything I want you to get out of this broken world, it's just how great our God is, and how much he takes care of us. That has been shown to us so much lately, but we know you are too young to really remember or understand it. 

Continue learning, growing and being a silly little boy that you are. You are our joy, our excitement in the morning, our heart, our little snow cone lover. We are so proud that we have the honor of being your parents!

Hi Ho, Hi Ho...

In just a few days I will return to work. It happened so fast. 7.5 weeks and it is time to return. I am so bummed to leave little c at the hospital and I am just hoping and praying he will get awesome nurses like he has.  Its nerve wracking. Especially since his main thing is to work on feeds, and if he gets someone who patient with him he will get quite a bit down. But that's the problem, they don't always just have all the time to devote to sitting with my baby While he slowly eats, I mean, there are other children here. 

G tube is highly likely. He's off the phenobarbital and so so so much more awake. Pray for no seizures, ever! Buuuuut... his feeds just haven't increased enough. If he shows off something major in the next two days they may change their minds, but i kind of doubt it. And hey, if that means it gets us out of here, lets do it! 

I think if there was such a thing as NICU psychosis, I sm developing it....

Keep praying and following along on FB for updates!

You Think You Know...

You think you know, but you have no idea what it's like. Unless you have physically had your baby in the hospital for the first six weeks of his or her life. You have no idea how hard it is. How bad you just want your baby at home, so your family can be complete - and somewhat normal. 

You neglect yourself trying to get as much time in that small horse stall sized room as possible. You forget to eat, after all no food is allowed in the room. 

When you are with your baby, all you can think about is being at home with your big boy. When you are at home with the oldest all you can think about is the baby all alone at the hospital - being cared for by a nurse you just met yesterday, or just at shift change. It's hard - that feeling of being completely torn between two places and there not being enough of you to go around. 

In a week, I will return to work, with one kid at home and my newborn still in the hospital. That thought is simply nauseating, how on earth am I going to be in three places and not feel like someone or something is being neglected? 

Doctors keep giving us false hope about going home. The cardiologists come in and say its okay to go home with an NG tube. Then the neonatologists come in and say absolutely no way, that's too risky. The cardiologists say that he needs  to be bigger before he will eat better, and surely that can be done at home. The Neos say, too big of a risk of infection.

So we wait. Wait on him to eat better. Wait on him to be stronger and take his feeds by mouth. And just hope and pray that he gets to come home sooner rather than later. 

I know it's blurry...

But I love this kid so much it hurts! 

Caysen: 1 Month. A Letter.

Dear Caysen,

Boy - have you taken us for a wild, wild ride this first month. We were eagerly anticipating your arrival, talking about what a change it would be for Camden and how he would take on the role of big brother while you slipped easily into the little brother role.

We talked about what it would be like for you to join us, having two car seats in the back, we planned to show you off to Grandparents and to take you to church and to wear you around while chasing your spunky almost 3 year old brother.

Little did we know that you and God had different plans for us. A completely different path to travel, a overgrown and wooded path that not many around us even knew existed.

That Sunday morning we had no idea how close we would cut things, or how different our lives would be. Forever. Despite spending the first month of your life dealing with emotions we never expected, events we could have never predicted in our wildest dreams, we still count ourselves so lucky to be your parents.

It has been a long month, one that started out with barely being able to touch or cuddle you, to now being able to feed you and actually see your eyes. It's amazing how far you have come. It was so long before I got to see those eyes again. Far too long.

You have been through more than anyone else I know, and you are only a month old.

Here are a few stats:

You weigh in at 7lbs and 11 ounces and are 53 cm long (20.8 inches or something like that). You are wearing size one diapers - they are huge on you. You were wearing preemie for a LONG time, but once you started retaining fluid after your first open heart surgery - they switched you to a size one after putting you on all of those diuretics. And boy, you were able to FILL them up for sure.

You are still wearing newborn clothes - in fact you have only been wearing clothes for about 3 days now. Your incision has healed nicely and you came off of most of your monitors and IV lines so you are allowed clothes.

You tend to run on the cool side very easily. We keep you wrapped up and your temp will still be below normal - yet you might even be a little sweaty under your little arms.

Occasionally you will get a line down your face - where one side will be a completely different color than the other side. Dr Jackson said that is just because you are a heart baby.

You are starting to look around more, take things in and track things. You aren't awake very much, I'm sure it's hard to recover from a surgery like that. You usually have an awake hour or two per shift.

You love to cuddle, and mommy loves it too!

We have only had you home for a mere 18 hours our so - before you got sick, but we cannot wait for what is to come. For you to come home. Again. You are our little heart warrior - you are stronger than the entire family combined, and you are nothing short of an absolute miracle after surviving what you did. Each day nurses come up to me and recall the day you came in - stating they can't believe you are the same baby. I'm so happy to hear that - it goes to show that God is SO GOOD. Caysen, if there is one thing I want you to get out of all of these trials you will go through in your little life - it's that God is taking care of you, and he will see you through it all. He has already seen you through so so so so much.

We love you to the moon and back, stay strong!!      

one month picture

I love this shot because he's looking at his Daddy. :)

Picking a surgery..

So after that terrible Sunday, we spent the next few days in shock trying to figure out what exactly this meant. What it meant for his future, for our future.

There were so many things up in the air. They told us he would need surgeries, but no one wanted to discuss or explain what these surgeries were because "why plan for it - you can't take a crashing baby to the OR". Well, that's true - but at the same time, what on earth was happening?

It was hard enough to deal with the fact that I didn't have a baby at home, I had a baby at the hospital. A very sick baby. A baby who might not be the same after it is all said and done. All while wondering if I would have a baby to take home in the end?

They explain that the only thing that was keeping him alive was the PDA vein that was open and allowing blood to flow through his heart. He has a very small aorta, combined with no left ventricle there was no blood pumping to the body. A few days after birth is when the PDA begins to close on its own. And when that happened is when he started crashing, that's when my baby started struggling to live.

At the hospital they continued to do various testing to determine his organ functioning. After a few rounds of FFP (Fresh Frozen Plasma) they were able to get his liver back on track so things would clot. They were checking his blood gases so frequently they had to give him more blood. He was still on a vent - they were having to add nitrogen to it as to not flood his lungs. He was breathings sub-atmospheric air. We breathe 21% oxygen, he was breathing only 17%.  His heart rate of course was still elevated and they were having a hard time getting his heart and lungs regulated the way they would like.

His kidneys weren't having any output. He was on TPN. He had MRIs/Echos/Ultrasound of Head. PICC lines inserted, arterial line removed from his umbilical cord and moved to his arm. That is how they check the blood pressure.

The head ultrasound showed that there was blood on his brain. Brain bleeds from lack of oxygen and build up of lactic acid. They weren't sure how severe so they did an MRI. MRI showed grade three - but the pediatric neurologist said there was also tissue damage which is a grade four. He mentioned that he wasn't sure how it would affect him, that it is rare for full term babies to have this sort of ischemic issue. The pediatric neurologist wouldn't come out and say "stroke" or determine really how things looked. He just mentioned over and over that it is too early to tell what may happen but he is likely to have issues as a result. We won't be able to tell until we want him to start hitting those developmental milestones.

So that was like a kick in the chest, where you lose all your air and you can't breathe for a bit afterwards. I knew it was likely and had been warned, but that doesn't make it an easy thing to hear.

The very next day I met with the pediatric cardiologist who wants to perform the surgeries on little C. She is quite a trip to listen to. She mentions that because of his brain bleeds he will not be a candidate to start the 3 necessary open heart surgeries as they all require heart and lung bypass. With brain bleeds they are guaranteed to make it worse, so they are unable to do anything of that sort. She explains he will have to have FOUR open heart surgeries now - the first one is called a Hybrid. This one involves placing a stent in his PDA vein to keep blood flowing through there and banding the pulmonary arteries. This will essentially "buy" us a few months for his brain to heal before he will need the first major open heart surgery called the Norwood.

As she explains all of these surgeries and how they are done - it's amazingly scary to hear. They literally will rewire the plumbing to his heart - and in the end my sweet little boy will essentially only have a two chambered heart - and it will do all of the pumping of blood to the organs, as they will have the rest of the blood drain directly to his lungs, making that a passive blood flow. It is absolutely insane to think of what it is that they can do.

Anyways - the surgeon is still quite a trip. She sort of talks circles around me. She gives us two options for how to proceed with the Hybrid - either by stent placement or injecting something into the PDA vein to keep it open. She gives these options - then basically tells us to pick which one - giving absolutely no direction to take. She was almost unhelpful when it came to that.

She mentions also that each time he goes on heart and lung bypass it will affect his brain. She explains heart and lung bypass as "literally freezing your child until there is no activity in any of the organs" and states that kids after being put on heart/lung bypass do not have normal MRIs afterwards. Then she reminds us that he will need this three times, on top of whatever damage has already been done to his brain.

He has so many obstacles to over come, and he's not even three weeks old!

He has his first surgery tomorrow - the stent placement and banding of the pulmonary arteries. It is taking place in the afternoon and will last four hours or so. If you are free - please take a second to send up some prayers for my little guy and for the surgeons working on him as they place the stent, crack his tiny chest and work on his walnut sized heart. I pray for steady hands, optimal decision making with stent size and placement and for God's will to be done. Thank you so much for your thoughts and prayers!