Tuesday, March 31, 2015

On Grief


It's a tidal wave of emotions, a pool you can't seem to swim out of. You seem to have forgotten your life vest, and you do your best to just float.

Some days are good. You accept things, you realize why things are that way and the hurt is minimal. But other days...it hits you like a ton of bricks. It's so incredibly difficult and no matter what you do, you can't seem to get out of your funk. You question why repeatedly, and you just can't seem to understand. The hurt cuts so deep that you would do anything to get away from the pain.

I was watching Grey's Anatomy a few weeks ago they said a line about one of the characters who was undergoing a surgery and not expected to live.

"She's in my head, but I'm not ready for my head to be the only place where she exists." 

yeah, that. Do you think anyone is EVER ready for that? I can make a safe assumption here to say that in most cases, no. People aren't ready for that. I can think of all of the friends, family and co-workers of my dear Andi, and I can tell you in that instance? Beyond a shadow of a doubt, NO. Definitely not.

I've done a lot of reading lately, Bible devotionals, books, really anything. A few on the specific topic of grief and healthy grief. One thing that seems to come up repeatedly is that if you don't talk about it and deal with it from the beginning, it manifests in unhealthy ways and will continue to be a bother for years, even messing with your own personal health.

I read this particular exerpt in one of my Bible reading plans on YouVersion. It's called Deep Grief and is by Lysa TerKeurst:

Deep Grief

I stood at the side of a casket too small to accept. Pink roses were draped everywhere. And I watched my mom as she lay across the casket. Within that casket laid part of her heart, so quiet and so still. Her little girl was gone.

It was the type of loss that cuts a heart so viciously it forever defines you. A loss called "deep grief'.

I remember standing paralyzed at the funeral. Just days before we were doing everyday things; suddently it all stopped. People were everywhere. Soft chatter filled in the gaps of our stunned silence. Eventually people went back to their own lives, and we carried on with ours, bound in deep grief.

I desperately longed for God to fix things. To take away my bloodshot eyes. To take away my anger toward him. To take away my guilt for being the one that lived. I felt I didn't deserve to be happy, ever.

This is the reality of deep grief. Even when you love God and believe in his promises, healing takes time.

It takes wading through an ocean of tears.

It takes discovering one day that the sun still shines and it's okay to smile.

It takes prayer, and a decison to stop asking for answers and to start asking for perspective.

Then one day you take off the blanket of deep grief. You fold it neatly and tuck it away. You no longer hate or resist it. For underneath it, wondrous things have happened. Things that can only come about when Divine hope intersects with a broken world.

And finally you can see years stretching before you once again. You look up, blow a kiss, wipe a tear and find it's still possible to dance.

I just love how she worded this. It is so honest and true. Those are all of the initial feelings that one might feel, and it is just so hard to accept. She goes on to the part where she talks about taking off the blanket of deep grief. The first thing I noticed is that she didn't mention a time frame. Because, there is no time frame. It takes as long as it takes. You may wear that blanket for a LONG time. It may take a while before you feel comfortable without it. You get to a love/hate relationship with that blanket. It's almost like a security blanket, but at the same time it's not healthy. Because what grown adult takes their blanket with them everywhere? But that doesn't mean that it's a bad thing. In that moment, at that time, you do what you need to do to cope. To grieve. She gives hope, saying that eventually one day you will be able to step away from it. You won't have such a love/hate relationship with grief. The part where she mentioned that you will "see years stretching before you once again"? That part is SO comforting to read. When you lose a loved one, and especially unexpectedly, it seems like you can barely see until tomorrow. The thought of looking ahead is an impossible task. There is just no way to even think of seeing years ahead. It is just unfathomable.

It's good to know that one day it will be.

Even in the Bible, Jesus wept over the death of his dear friend, Lazarus.

It says in John 11:33-36; (we pick up where Jesus is speaking to Mary - who was the sister of Lazarus)

When Jesus saw her weeping, and the Jews who had come along with her also weeping, he was deeply moved in spirit and troubled. "Where have you laid him?" he asked. "Come and see, Lord," they replied. Jesus wept. Then the Jews said, "See how he loved him!"

How beautiful is this scripture? Jesus wept right along with them. Jesus was not above the painful and crushing emotion. Jesus wept. And so can we. It's perfectly normal. God wants to hear your heart, and by letting it all out he can slowly begin the process of helping you heal. God weeps along side us as we grieve our loved ones. He feels our hurt and knows our pain. And when we start to heal, he can give us hope and comfort. We may begin to realize what a beautiful place our loved ones have reached. To have all the things the Lord can bless them with in heaven, and to be perfectly healed and well, and rejoicing in His greatness.

But for now, it's okay to cry. Its okay to hurt, to be mad and sad. To be homesick to join those loved ones in heaven. Because they are experiencing one of the most beautiful things that anyone has ever been given, and to join them one day in heaven will be a glorious meeting. Our time will come, but for now we must carry on their legacy here on earth. And what an honor it is, to have the chance to do that!

Tuesday, March 24, 2015

What you need to know about.... PTSD.


Post Traumatic Stress Disorder. 

Most people don't know what that is, or the different levels of severity. I'm here to say that just about everyone out there has likely had some sort of experience with a traumatic event in their life. PTSD is all about those traumatic events and how we cope. Keep in mind, it can also be a reaction to a traumatic life stressor, and everyones stressors and how they handle them are different.

After my experience with Caysen, the last few weeks of pregnancy, the first few -- oh 10 months of his life -- I would say that I have a touch of PTSD. I always considered myself the opposite of a helicopter parent. I was laid back with Camden, letting him eat dirt based off the philosophy, "God made dirt, dirt don't hurt". I let him cry it out, a little bump on his head never hurt anyone, and once when he split his forehead open a little bit - I just super glued it together instead of rushing to ER.

Then Caysen came along, changed up my whole parenting style. Suddenly, I became a germ sanitizing freak, carrying a cart cover and hand sanitizer everywhere. I hover, and when he sniffles and I tend to worry about hospital stays, needing oxygen and watching for prolonged blue spells. Why? Because in the past when he tanked, it would happen so fast. And having watched your child fight for his life on more than one occasion, it tends to mark you.

Most of you all know that I work in the health field, specifically mental health. In all of my years of experience if I have learned anything, its that no one is spared from this area. Mental health is an interesting thing, really leaving no one untouched. PTSD from events can effect you and shape your future.

Life events can leave you scarred and scared. Scared to break down walls, to unnumb yourself, to share your feelings. They can leave you feeling isolated and alone, leaving you clammed up and in bed, not wanting to face the world.

People need to know that there is no shame in getting help when you need it. About talking about your stressors. Talking to friends, to counselors. There is nothing wrong with admitting that you can't do it alone. In fact, there is more strength in admitting you can't do it alone. That is admirable, admitting you need support and taking things in stride with your head up, determined to not let it win.

And most importantly, I hope people use this time to know that their one true helper and healer - is God. He's always on your side, he will never leave or forsake you. I read in a book about a golfer - and how they look to make shots. Do they focus on the trees they are trying to shoot through, or do they focus on the gap and what's beyond it? The gap. That. That's what we have to remember. Keep your eyes on him. Keep your eyes on the gap and what is beyond.

I have seen PTSD come in so many ways, shapes and forms. I have seen it attack loved ones in the form of sick family members or illnesses, to physical attacks, to a variety of emotional situations.

It can rear it's ugly head at any second. Caysen quits tolerating his feeds for two days and naturally I want to start getting jittery and analyze every waking move, take notes on every missed or vomited feed and try to figure what the root of the cause is. I tend to pray for fevers and diarrhea so I can chalk it up to a virus - and not something like poor heart function/heart failure. My life is so drastically different with child number 2, I never expected to pray for a virus to ease my mind.

This is just my own personal experience. But in my world, I have witnessed many different people battle PTSD and each battle is unique. Just remember, that you never know what someone is fighting. Be compassionate, live kindly. Encourage others. And when someone wants to open up to you to talk? Listen. Share. Encourage them to seek help however they may need. And remind them of their Heavenly Father who loves them so deeply, and so intensely and is the comforter to us all.

And finally - the why. Why does PTSD exist? I have no answers for you except that we live in a broken, broken world. And that is why our hope lies in Him.

Jesus replied, "You do not realize now what I am doing, but later you will understand." - John 13:7

The thought of my suffering and homelessness is bitter beyond words. I will never forget this awful time, as I grieve over my loss. Yes I still dare to hope when I remember this: The faithful love of the Lord never ends! His mercies never cease. Great is his faithfulness; his mercies begin afresh each morning. -Lamentations 3:19-23

Blessed are you who hunger now, for you will be satisfied. Blessed are you who weep now, for you will laugh. -Luke 6:21

Thursday, March 5, 2015

Time Heals All Wounds...or Not.

Yesterday was tough. A month has passed, and Andi just seems so incredibly far. I don't want to be further away. The further away from that day we go, it almost seems to make it worse.

The saying goes, "Time heals all wounds".

That saying makes me wrinkle my nose in frustration. 

Why, you might ask? Simply because, the wounds remain. Eventually, like you would have with a real life wound, it will scab over and be covered with scar tissue but visible scarring remains. On top of that, you also have the emotional pain associated with the injury.

No matter how you are hurt, scars remain. Those scars remind us that the past is, indeed, incredibly real. 

Unfortunately, as time goes on from such a great loss, the pain remains fresh for those close. The wounds they bear seem to be cut that much deeper, wider and the injury is just so intensely and consistently present. To those that weren't as close, they seem to carry on without as much pain or hurt. It's as if their scars heal so much quicker, and those of us trying to slowly heal get left behind and forgotten about. We seem to sit behind stuck in a dimly lit hospital room attached to a wound vac because our non-healing and stubborn wound has left us hospital bound, unable to free ourselves from cords to get out to the fresh air and everyday routine. (sorry for the hospital reference there..)

The hard part about losing a loved one? The scars aren't visible to just a passer by. To co workers, to strangers, or even on a day by day basis. You can't know the injury by looking, there is no attached wound vac, no zipper scar, no visible chest tube scarring. When others look at me, they don't know the scars on my heart and soul, the pain of my loss, or that I have only acknowledged that loss no less than a hundred times already in the span of six hours upon waking for my day.

Sure, time will help to heal the wound of loss, but there will always be reminders. 

But at the same time, I almost don't want to heal. I want those reminders. I want them repeatedly, so that the legacy of my beautiful friend lives on. I don't want it to heal completely and be like our friendship never happened, our support of each other, our disagreements, and our amazing triumphs over difficulties and trials. I want to be marked, forever. People need to know what I knew about her as a person. They need to know how she changed lives. They need to know about her compassion for others, how genuine her love was for her patients and families, and the way she served others. They need to know how she saved lives. 

In the same way, I want to be sure that I live my life so it is known that I have been marked by Christ. I want reminders of his goodness, his grace, how he has walked me through the hard times and how I can prove it by my scars. People need to know Him. I need to share with others His goodness, His encompassing love that surrounds me and gives me peace when I feel like there is just no hope. They need to know how He changes lives, how He cares for us.  In the same way that Andi helped saved Caysen's life, others need to know He saves lives. They need to know that we get to see her again, because of Him. That she is safe and healthy and with those who went before her - because of Him. They need to know by His grace, we are saved through faith. They need to know that He saved her.

Wounds suck. Especially the slow healing ones. As time goes on, it seems as if others have forgotten, but I have not. I'm still deeply changed by the loss of Andi, and always will be.

Thankfully, God has given me new interactions to try to help me with healing. Friends and family of Andi's that are with me as we walk through this healing process. I will always speak of Andi and share about what she did for us. I will always try to live my life in the way she did, serving others and being so incredibly selfless. (I remember when she told me that she couldn't drive through a McDonalds without donating EVERY TIME to Ronald McDonald House because she knew how many people were served by those - including some of her very dear friends.) She spent more time thinking about others than herself. She always went the extra step, whether she had the time or energy for it, she did it anyway because she cared. She was dedicated to helping those in need - and the more I think about it, that is very Christ-like in itself. 

I want to be sure I live that way. Caring for others, devoted to them, and most importantly sharing the love of Christ. Andi is happy and healed and well in heaven, and we can all have that too! We all have that to look forward to. We have that because of God's deep love for us. All we have to do is accept it.

It's a place that is so beautifully perfect, we don't need time to heal wounds. We will already be healed. Perfectly. 

There will be no scars. 

"He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away. He who has seated on the throne said, 'I am making everything new!' Then he said, 'Write this down, for these things are trustworthy and true'". - Revelation 21: 4-5

“Listen to God with a broken heart. He is not only the doctor who mends it, but also the father who wipes away the tears.” 

Wednesday, February 25, 2015

On Writing

Well hello there, it's been a while hasn't it?

Life has been so extremely busy, that I lost the chance and time to write. I didn't write Caysen an 18 month letter (mom fail), and I haven't been using my outlet of writing for myself, for my kids, for anyone to remember our journey.

Sometimes you just have to be in the mood to write. Sometimes, there just isn't enough time in the world, to sit down and say what you want to say. The words you want to write that you feel inside just don't fall out onto the keyboard the way you like or hear in your head.

I have written lots of letters, summaries, stories for both boys, our families struggles, all on this little old blog. Usually they are fairly easy to write, to tell and to express.

But a few weeks ago, I was given the beautiful opportunity to write for my friend. The chance to speak at her funeral was one that I knew I wanted to do, no question. The hard part? The hard part is the writing. How does one, with a heart so incredibly full of love and words and adjectives, summarize the best friend they've had into a short little speech that explains what her life meant to you and your family? How is that even remotely possible?

It wasn't an easy thing to do. I started over many different times. Deciding what to say that could adequately explain what she meant. I think I did a good job, yes. But I think with more time to heal, more time to deal with emotions, I could come up with a novel.

As I sit here while I type this, my sweet little half of a heart youngest son, Caysen, sits in my lap. He lets me play with his extremely cold, blue hand and I kiss his hair, he looks at me with his yogurt stained face, watching the tears slide down my cheek, and he tries to understand what that means. He doesn't understand tears, and searches my face for what I'm feeling. And what I'm feeling is that I still can't believe the journey that our family has been on.

The very journey that Andi played a HUGE role in, and that I will forever be grateful.

The hardest part to accept - is that she is no longer here. I can accept and know that she is safe, healthy, not in pain, hearing without hearing aids, and will be waiting for us in Heaven when we get there.  I feel that she was saved from something worse, more than we could ever think or know because we aren't God himself, and only he truly knows. I know that God took her because that was the best option for her.

But, the hard part is that she IS NOT HERE. She isn't here to watch my boys grow. To see Caysen get big, after all she did for him. To know the role she played. She is not here to talk me down from the proverbial medical ledge with a corny joke or funny story; when I'm stressed out from germs and lab results and upcoming heart caths and open heart surgeries. She isn't here to continue doctoring, to finish what she started. To finish what she had such an amazing drive and determination to complete - despite having every POSSIBLE and potential thing she could have to make things more difficult. (hello - have you ever met a deaf doctor - that was still a total bad ass? Have you ever met someone living across the country from her husband and still one of the bubbliest and funnest people you have ever met?). Yeah, didn't think so. Because despite the odds stacked against her, it made her more determined, more confident that she was doing what she was supposed to be doing.

That is such an admirable thing. To know, without a doubt, despite the troubles and hardships, that God has put kids and medicine on your heart to do, despite every road block. I pray when God speaks to me that I will always be so obedient.

A wise friend told me, which knocked the wind out of me -- but she said that she would never, ever consider bringing Andi back and taking her out of the grasp of our Lord and Savior. She said she couldn't be that selfish. The more I think about it? So true. When we are in His presence, it will be such a powerful thing, so awe inspiring, that we won't even be able to stand upright. We will fall to our knees as His greatness renders us speechless. How could I take her away from that? What a great and beautiful thing, that she is up there happy, healed, whole, with all of the loved ones who went before her, patients she cared for, and her grandmother that she spoke so highly of.

I think about her often. I think about her husband and family. I know that if I am hurting, they are hurting a thousand times over. I pray they find peace in the Lord, their Savior. I pray they know, they see, His glory and his goodness. I pray that they turn to Him, as there is nothing, NOTHING, Andi would want more, than to spend an eternity in heaven with her family and loved ones.

It doesn't take away from how hard it hurts. Tonight, at bedtime, Camden and I were saying his prayers. He prayed for Andi and her family, and said "Please help them to not be sad and to not miss Andi while she is in heaven". Then he turned to me and asked me "Mom, were you Andi's friend?" I answered yes, and he did something he never had before - He prayed "Please help Andi to not miss Mom too much, and for Mom to not miss Andi". He was hugging me in the same way Andi would hug me, standing high enough so I could hear his heart. I always took comfort in hearing her heart beat, strong and powerful. I would always pray that Caysen's would sound as strong as hers. But at the same time, it was all so bittersweet.  I realized I don't get to listen to her heart anymore. Physically or emotionally. I miss physically hearing her heart. I miss knowing what's on her heart. I miss that simple comfort.

But because of her, I have THREE hearts in my family to listen to. To savor. To love on with my heart. Like I have said before,  she made our family whole.

We both said, and I even have it in her handwriting, that God knew what He was doing when that pharmacy messed things up. Him bringing us together was a gift in more ways than we could ever count. Thank you, God. For your goodness you bring to our lives and allowing this angel into ours.

"You, dear children, are from God and have overcome them, because the one who is in you is greater than the one who is in the world". 1 John 4:4

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,