Chapter Eight: "Let There Be"

Imagine there is nothing. Just, nothing. No sun no light no dark nothing. No time.

But there's God.

He's there and He decides He wants to make stuff. Loads of stuff. Atoms and Giraffes and Bears (even Teddy Bears) and Hair and Sun and Air and Nitrogen and Balloons. He simply speaks and everything that we know to be, is. Because He says so.

When He did this, He saw everything.

He saw so far forward into the future that He saw a little tiny baby boy whose heart maybe needs a little bit of help. He saw how much that little baby would struggle, He knew that baby wouldn't survive without some help. So He started a Chain of Events.

First He made medicine and x-rays and hospitals where people with compassion decided they wanted to take care of other people. Then He made microscopes and gave people the talent and drive to figure out how to cut into people to help fix them. He knew that sin would be so crazy in this world that it would eventually affect our bodies and He wanted to help. So He sent people. Doctors and Surgeons and Nurses and Technicians and Janitors and Policemen.

Born to this world was a little girl, who grew up to be a woman, who went to school to be a doctor, who started to look at hearts, who started to look at little kids hearts, who meets moms and explains "This is what we found, this is what we can do."

Born to this world was a little boy, who grew up with younger siblings, who struggled to know who he was, who was lost for a little while, who met a girl who fell in love with him and he decided he wanted to be a man and they got married, and had a baby girl and then found out they were pregnant with a baby boy and that baby boy would have one ventricle in his heart.

God set it up. Boom boom boom, like a bowling ball, He set up the pins and set in motion what is happening right now.

He did this on the very first day that He created the world. He said "Let There Be" and there was.

There was light and dark and fish and birds and animals and grass and trees and science and math and time and day and night and there was Dean Blair Jaques V. Right from the very start of this world God was writing my little baby boys story.

How freaking cool is that? 

Pretty freaking cool.

Chapter Seven: "Dear Ellie..."

Dear Ellie,

This is as much your story as it is your little brothers. You don't know this, but you are giving up so so so much so that Daddy and I can be with him. You won't remember so I want to tell you, because it is important.

You are such a little girl. So tiny still. I feel like your little brother will take very much after the Carrigan side of things, as you took after the Jaques side of things. He might outweigh you pretty quickly. You will always be the big sister though. You will always have 20 months of life on him and trust me, that 20 months will go a long way at some point.

Don't forget that I had you first. Don't forget how precious those 19 months of just you and me and Daddy were. Don't ever, even for a minute, think I don't love you as much now that you have a brother.

My heart grows to hold both of you, in big big ways.

I want you to know that people love you. Uncle John and Aunt Kackie who watched you while I was in labor, giving up their Super Bowl Sunday to come take you. Mimi who flew all the way from India to meet your brother and to be here to play with you...I can't tell you how wonderful it was to know that you were with her. That she was with you. Grammy and Grumpy who might have you for a month or two while we wait and see how baby brother does. All of these people love you, so much.

None of them are Me though.

I feel guilty Ellie. I feel like less of a Mommy because I can't do everything for both of my babies. I miss you during the week in the worst ways. I'm terrified I'm going to annoy Grammy because I ask after you all the time. I'm terrified that she will resent having to look after you for weeks while I'm here at a hospital. (She assures me this is not the case...but she's your Grammy, not your Mommy, and I don't want you to ever forget that). (So for now, it's fine that she gives you ginger snaps with whipped cream).

I have to fight every day to remember that this is what God has given us. I have to fight every day to remember that in Christ I am enough, and I want to fight, because I want you to know that. You are loved. You are enough. You are strong. You are beautiful. You are kind. You are a Daughter of Christ and His love for you is BEYOND what I will ever be able to tell you.

But if I don't believe those things for myself, I know you will never believe them for yourself.

So I fight.

We're fighters Ellie. We come from some strong women, women who have been through the ringer and come out stronger on the other side.

You and me, girlfriend, we're going to come out stronger from this.

I'm going to ask so much of you one day, especially when it comes to your little brother. I'm going to ask you be kinder and gentler to him. I'm going to ask you to protect him and watch out for him on the bus and while you guys are at school. I'm going to ask you to take care of him when I can't, and I'm going to ask you to stick up for him when I'm treating him like a fragile baby doll. He's not. My head knows this, but my heart doesn't yet. Be his Big Sister. Stand up to me sometimes too.

Already you are giving up so much time with me and Daddy. Already you are making sacrifices of love, already you are showing your little brother how much you love him, simply by letting me and Daddy be here while the Doctors fix his "owies" as you like to call it. Already you are strong and teaching me to be strong. Already you show me so much compassion when you snuggle me while I cry, just because I have the privilege of holding you.

We are going to argue one day Ellie girl. We are going to fight and scream and be so so angry at each other. I might not like you and you might not like me. In fact, I promise that we won't like each other for a while. I also promise that at the end of the day, there is nothing you could do that would make me love you less. Never. My Mama said that to me once and I will say it to you, because it's truth.

You won't remember the long weeks without us, you won't remember the Facetime calls or the Skype Dates. You won't remember the tedious car rides where you tell me "ow ow ow" just because you want out of the car seat.

You won't know that I cried the other night because I just wanted to be home with my babies, you won't know that my heart hurts every time I had to leave you.

You wouldn't know any of this, unless I told you. And I want to tell you Ellie girl.

Because your brother is fighting a battle. Because you and me and Daddy...we are all fighting a battle.

And without you, you brave strong beautiful little girl, we wouldn't make such a great team.

Deano's story is your story too Ellie.

Don't forget that.

Love,
Mama

Chapter Six: "Celebrate the Highs and Pray through the Lows"

Blair and I have a lot time to talk right now. We cover a wide variety of things and a lot of what I start to think about stems from that.

Today we were, of course, talking about our son.

I was asking him if I seemed to pessimistic, and he said that at times, yes, I am. I thought I was being realistic about what all is happening, but Blair just said "Sometimes, I wish you would be less...scared and more trusting." (Maybe not in those exact words, but that's what I got from his tone and as we talked more, I think this was what he was trying to say.)

As we drove home from the hospital tonight I wondered "Is this what Love really looks like?"

Let me back up here...

I didn't think a lot about this time while we were pregnant. I knew in my head that we would spend a lot of time at the hospital. I knew that it would be hard to see my son go through these surgeries. I knew that I wouldn't get to hold him like I wanted, or feed him like I wanted for a while. I accepted it.

But I didn't let it sink in, and I think this, in the end, worked against me.

Here is the truth. Cold and hard and fact: I was afraid of loving my son too much.

Afraid that if I gave my whole heart into loving him he would never wake up. Afraid, every single step of the way, that at some point we would receive that call. The one every parent dreads when they are away from their children. Oh the trust that Mama's must put in others and in God...

It was easier, for a time, to remain aloof, to think in facts, to make light of the good days, brushing them off. In my mind good news was fleeting and I was waiting waiting waiting for something that might never happen. I watched my husband and my family and his family celebrate every mile stone, as small as they might be, but my heart couldn't commit to celebrating with them. It was too afraid.

My sister in law, one of them, texted me the other day. I hope she doesn't mind me sharing this, but it's been resounding like drums in my heart ever since I read it. She said "...It makes me miss everyone more than I usually do but at the same time I feel closer to everyone as we all come together to celebrate the highs and pray through the lows."

Here is my family celebrating every weaned medicine, every open eye, every single bit of good news and here I was, his Mama, holding back. Waiting for the bad. Expecting it. Preparing for it.

Is this what real Love really is?

Committing to the highs and the lows? Embracing every single beautiful moment, moving forward, and truly loosing your heart to another human?

It's still widely thought that love doesn't hurt. Because I'm in a real place and because I can, I'm calling BS.

Yeah...yeah it would hurt to lose my son. Yeah it hurts every time I watch him struggle to cry. Yeah it hurts every time I see his blood pressure go up and can't do anything about it. Yeah it hurt to see him cut open, his heart beating there in his chest, pale, and un-moving except for that beating. Yeah it hurt to not be able to hold him. Yeah it hurt that he didn't move or open his eyes for ten days. Yes. Yes this type of love is so big and so crazy and so wonderful that it hurts.

Tonight I helped change his diaper twice. I...why is it so important and significant that I changed my sons diaper? Because he is my son and I love him and this is the first time I have changed his diaper.

Tonight I rubbed my lips and nose on his precious little head. I sang him songs that I sing to his sister and read my favorite psalms to him. Why is this so important and significant?

Because tonight, I just...I just stopped holding back. I just finally felt like this is my baby and this is his life and yes, yes scary things might happen with him. I just finally opened my heart to him and welcomed him in there no matter how much it hurts or might hurt. I don't want my son to remember all his life that his mom thought he was too fragile to love.

Let me repeat that, more for me than you.

I don't want my son to remember all his life that his mom thought he was too fragile to love.

He got his feeding tube put in today and he got the colostrum I worked and worked for. It just...felt like...Christmas morning and my Birthday and his Birthday and every other significant day ever. It felt big. So so big. And I celebrated and was excited and won't shut up about how beautiful he is and wonderful it is to see his eyes and stroke his hair and rub his legs and to sing to him and hear him calm...

Is this what Love really looks like?

Yeah. Love is celebrating the highs and praying through the lows and opening your heart to the possibility that it will be crushed like never before. It's so big and wonderful that it doesn't matter. It will never matter that my son might end up being the one who breaks my heart or that my daughter could break my heart...children have an amazing hold on their mama's. Whether they are on this side of Heaven or not.

My mind drifts back to Jesus on the cross. It drifts there a lot. His heart, God's heart, broke for us all that day. Sinners everyone. We, as children, have the ability to hurt the Lord like no other and He STILL did it for us, still gave up His life. It is important to remind myself: my children hold only pieces of my heart, my God holds all of it. And He has some strong super glue. With that glue I can love and love freely, no matter what might or might not happen, because the Lord can always glue the pieces of my heart back together and make it even more beautiful.

As we get older...we start to see love in new ways. I just never thought my children would teach me so much. I just had no inkling that my son, this barely two week old baby, would be able to teach me more about love in those barely two weeks than I've learned in three years of marriage.

Love is celebrating the highs and praying through the lows and opening your heart, no matter the circumstances. It's not just children either, husbands, wives, parents, siblings, friends all have the ability to hurt you so deeply that you think you won't be able to bounce back.

I refuse to live with my heart closed to love. Refuse to act like just because someone has the ability to hurt me (whether on purpose, or just through circumstances) that I won't love them.

It's Big and Wonderful and Scary and Awesome. It's Highs and Lows and every step in between.

And worth it.

Love is worth it.

Chapter Five: "Our God is In Control"

I hate that sometimes. I wrote the title and immediately was like "That's such a yuppie Christian thing to say. Ugh Madalynn."

Just because something is said a lot though, doesn't mean that it isn't true. This is truth.
God is in Control.

I remind myself of that a lot, I have to. We have so many ups and downs, I got sick, Ellie has a cold and will not be staying with us this weekend (and I will miss her something fierce), Blair finally admitted how useless he feels...how he was ok with me being sick because it meant he could take care of me.

We gave ourselves permission not to be at the hospital all night. We put our trust in our son's Doctors and Nurses and I told myself all afternoon, "God is in Control." I've heard it said that He's up all night so I don't have to be.

I find amazing comfort in that thought.

Some days, this just...this just sucks. Hard. A lot. More than I can describe unless you've gone through it. Not something similar, it. This. Hypoplastic Left Heart Syndrome. Open heart surgery mere DAYS after being born. Do you know what newborns should do? Poop meconium, nurse at my breast, and make little sounds in the middle of the night that make me smile. They should be crying moving, wiggling, I should be changing his diapers.

My reality: I. Have. To. Wait. And pray and talk to him and rub his fuzzy little head and be away. And I can't plan a dag-on thing. I have NO idea when we get to come home. None. And even when I do find out, I won't trust it. Yesterday he was doing great, by this morning, they were doing an echo because they weren't seeing progress as he should. By this afternoon he was ok. Seriously, what the hell?

We don't go day by day. We go hour by hour.
And we wait. So much waiting.

Look though, there has been laughter. God knew that we would need laughter.

The day he had surgery his godparents came and sat with us. I love them. They crack me up and it was so good to laugh with them during that time of waiting.

Like the time my amazing mother in law and Blair's Mamaw came to bring Ellie to see us. They took us back to Front Royal to get things and boy was it an adventure. We made wrong turns. We got lost. I had to pump in the car, hysterical. I had them rolling. "Oh Hello DC, this is my boob, yup, it's happening, move alone."

Or the night I was just having a bad day. I have this weird thing right now that when I cry, I would just rather be alone. Most of the time, this happens in the shower. Blair knows. He lets me and I love that. I jump in thinking "I'll cry for a little and get it out and be done and move on." God knew that I needed laughter. Basically, with pumping, I had not been emptying myself well enough and had a knot. I worked it out in the shower and then just shot milk for a good two minutes and I laughed and laughed.

Yes. That was a story about me milking myself. You know what? I want my son to know that story some day. Because dude, it's FUNNY.

Wednesday night My amazing mother in law brought Ellie in to have dinner with us, and then she and Blair went to see Deano. When they got back I had given Ellie a bath and put her in her footie pj's. Her pj's don't have good traction. My girl LOVES LOVES LOVES the elevators, she dances in them, and tries to push the buttons. When we all got in to say good bye for the night, she ran and completely wiped out and fell on her bum and hit her head. And the three of us just laughed and laughed and laughed. (She laughed to, by the way)

Yesterday, Blair's voice randomly cracked while he was talking to one of  Deano's nurses. I thought I was going to pee my pants.

Here is why these things are so important: because God is in Control. He knew, he so so so knew that we would need to fill our time with laughter. He knew we would need to allow ourselves to laugh.

I've been thinking about that all day. I was sick and came back early and slept and prayed and talked to people. If I were in control I would have completely forgotten about Joy and Laughter.

My God is so good that He doesn't forget those things.

I've been told how strong people think I am. Suddenly, I feel it. Don't get me wrong, they did their echo today and I was terrified they would "find" something. Being strong doesn't mean you're not scared though. I think it just means that you cry when you gotta (in the shower or wherever) and then you wipe those tears and say ok. Next battle. Bring it.

There are so many people I wish I could thank. So many who have no idea what their kindnesses mean to me. My cousin was here to day, haven't seen that kid in forever, and what did I do? Fought tears and asked to drive me somewhere. Without hesitation he did. (His girlfriend is so lucky to have him...shout to Carter who has actually subscribed to my blog...you are winning, just so you know)(and so is he). My parents, Blair's parents, friends from church, my older sisters, my big brothers...strangers I've never met in person...God is using YOU all to remind me that this is not something we are fighting alone.

God is using YOU all to remind me of His unfailing wonderful Control in my life, in Blair's, in Ellie's, in my Son's.

Literally every time I start to feel discouraged SOMEONE texts me. Every. Single. Time.

I am blown away by God's control. I am blown away by His love.

I am hiding there. Sheltered in His wings. Crying and Laughing when I need to.

I am thankful. More than anyone will ever know for the way this is drawing me close to God and closer to those who love me and whom I love.

Chapter Four: "Think of Quiet as Healing"

When it comes to my kids, I think, like most moms, I'm a doer. I want to DO things. Things that seem unimportant to you mean the world to me.

I see other moms right now with their babies, big ones, small ones, fresh from the womb ones...I see them holding and snuggling their babies. I fight against being jealous, though I am. I give that up and remember how my life is so richly blessed. I take that to Jesus. Daily.

Right now my days consist of being in a hospital room with my husband and my now week old son. We bring our kindles (We read), our computers, I have a bag of craft things. We listen to music, I post things to Facebook, I text my friends. I Skype with my beautiful girl. Today, I paid a bill, planned our month in finances, organized a list of people who are willing to help watch our girl, called my mother in law, called my Mother, planned, wrote lists, and crafted a cute name tag for Deano's bed.

I had uninterrupted time in the quiet of the day.

There was no Ellie talking about bears, no her getting into something she shouldn't or climbing on a table. She wasn't pitching a fit, she wasn't whining or singing. She wasn't here to dance to the music Blair played for a short time.

There was no Deano waking up, demanding to be nursed, crying because he was wet, needing a diaper change. There was no Ellie trying to kiss Deano for the tenth time, no her trying to pick him up. He doesn't coo, he doesn't cry, he doesn't stir. He is still.

This room is still. This room is quiet save for the many machines that monitor and beep and keep my sons heart and lungs and kidneys working. There is a low hum in his room. Often this place is just so quiet.

I chafe at it. It gets under my skin. I talk to Blair about everything and nothing to fill the silence. I talk, but not too loud, afraid that if I do I might miss the slightest sound. I play music, worship songs encouraging me to draw deeper to Christ, but not too loudly, because this space feels as though there is something there, just on the brink, and if anything is too loud we will not hear it.

I want to hear my son cry. I want to hear him coo. I want to see his eyes. I want to snuggle him close. Hold him to me and whisper my love to him, my love and God's and Daddy's and Ellie's. I still do that, I talk to him all the time. I joke him about his "girlfriends" (nurses) and remind him that he will under no circumstances be a player. I told him about the day I found out I was pregnant, how I told Amanda through Facebook before I told anyone else. How scared I was.

How all I wanted, more than anything, was for him to have a heartbeat.

How I cried when I first heard his heart beat.

How scared I was when I found out it was his heart that had an issue...how I wondered, in the silence of the night, if at any time, his heart would just stop...

I tell him how wonderful it was to feel and see him move inside me. To watch him grow. To bring him here, though in my soul I wanted him to stay in me, safe.

Someone reminded me today, that there is healing in the quiet. In the stillness.

My son's chest is still open. If he were moving, there is so much that could go wrong. It is hard not to hear him cry, but oh, am I thankful that this has given him a chance to live.

There are things that God is teaching me that I didn't know I needed to learn. Like how to be still. How to appreciate the quiet. How to accept it and live in it. How NOT to fill the silence. How to enjoy it and love it. How to see the deafening beauty that is the quiet hum of a machine. To see beauty in his open chest and swollen body.

I am reminded, daily, that he could be gone by now. When I look up from my book or my craft or my lists or as I get off the phone and see his little head there...there is a feeling of love that overtakes me. Of remembrance that this surgery has given my son a chance at life here with me, with Blair, with his sister, and Grammy and Mimi, and Grandpa and Grumpy, and countless Aunts and Uncles, and cousins.

Today I was reminded that the quiet means he is healing.

I couldn't help but think of the times God has seemed quiet in my life.

Put those thoughts together.

Maybe those times we think God is quiet, He isn't.
Maybe He's just leaving room for us to heal.

Embrace a quiet night.
Let it Heal you.  

Chapter Three: "He's There, just Out of Reach"

Last night we slept in real beds. It is amazing the things you take for granted. It was amazing to have pillows and blankets and get to sleep next to Blair. We so needed the time to be together, alone.

Blair is so patient with me. I don't understand how he is handling this so well, even though he assures me he's not really. I had a good friend remind me that when your milk comes in, there is a chance that your hormones might shift and cause you to be a little weepy. Oh yes, this is true. Blair has seen me cry about many things. Most of the time it's not even about Deano. I cried the other night because I bought him the wrong thing from the cafeteria for dinner.

I cried last night at four AM because I didn't have my babies.

Blair's Mom, who came from India to be here for us, brought Ellie to see us yesterday. I came out of a shower and there was my girl. My beautiful, healthy, running, toddling girl. So precious. And talking so much! Oh my heart! Oh my darling daughter!

I don't think anyone can fathom the guilt I feel not having either of my babies to put to bed. Can't know how excited I was to change Ellie's diaper (and it was even a messy one!) yesterday.

I have a newborn baby. And I got a good nights rest. I was up to pump, but I still got good rest. This is practically unheard of for a momma with a newborn!

My heart aches to have my children with me. When we stopped at our house to pick things up yesterday, I looked at the corner where his pack and play should be set up (it's not yet), and his dresser, and all the amazing things people have made for him and yes, I cried. I want them home with me. I want my babies.

I told Blair this morning it almost feels like we're on a surreal vacation, because we get to sleep so much, and don't have to lug Ellie's things all over, and I'm not constantly nursing our son.

But I wish I was.

All of my very soul wishes for my babies, I can't say it enough. I'm a Momma without her babies right now...I feel misplaced in the world.

I walk slowly still, recovering from his birth. I wonder what people must think of me, this slow woman walking to and from her car in the hospital. I want to shout and scream, "I just had a baby!"

As much as this is Deano's story, it's Ellie's too. My girl is spending so much time away from me. Oh Lord do I miss her. All the sudden she looks so big...Dc Children's Hospital has this little bear called Dr.Bear, it's their mascot. She loves him. All through out the hospital she pointed to them and said "Da Bears! Da Bears!" She was enamored with them. I held her up in a window and we looked and looked at them. I can't wait to see her be a big sister. It hurts me deeply that she didn't get to come see Deano before his surgery. I'm grateful that they were able to get it done quickly and successfully, but I wanted her to just see her "baby". Just once. And yes, it's out of fear that it might be the only time.

We aren't out of the woods yet. I celebrate each moment. Every day since Monday I wake up thinking "Thank you Father, for this day." Friday I kissed Blair good morning and said "We made it one more day. One more day."

Time has never felt so precious. We are living in the moment in an amazing way. Accepting enough Grace for the day. Thankful for the new mercies. Thankful for the prayers. Thankful for the love. Thankful for my family, for Blair's family, for the people who love us, my sister friends, and Blair's brother in arms. There are people across this country praying for my son, right this very moment.

How humbling. To be so loved. Whoah. Today one of the Elders from our Church drove out to DC to just see how Blair and I were doing, to pray with us. Just because he woke up thinking about us.

Writing this post, there are more tears.

I've gotten a lot of feedback about writing and sharing his story. I have to. I process things this way. And if my story and Deano's story can help others, why would I not? Look I've met so many other HLHS Momma's. Ones who have gone through this, are going through it, or have yet to go through it. My heart hurts for each and every one of us. My heart is angry at the sin in this world that has caused such pain and heartache. I am constantly reminding myself of God's sovereignty and His Great Love for us. I am constantly reminding myself that this is breaking God's heart too.

It feels like my babies are here, just so far out of my reach. My mama heart wants to do so much more for them, both of them. Especially for my beautiful swollen baby boy.

I have to remind myself, minute by minute, that if they are out of my reach, if I am unable to get to them the way I want to, they are not, nor will they ever be, out of God's reach.

So snuggle your babies, your children, close. Call them up please, tell them that you love them. Treasure the moments that are hard, that are difficult. Drop everything for them, please, if not for yourselves, do it for me. Do it for my Ellie girl who is being spoiled by Mimi, and for my Son who can't be held by me just yet.

When you go to sleep tonight, remember your children are held by the Ultimate Father. Remember that you are held by Him as well. Remember you are His Child and His heart is for you.

Remember no one is out of His reach.

Chapter Two: "I'm scared Daddy"

I keep thinking that we've reached the hardest part. I keep thinking, nothing can get harder than this moment. I keep getting proved wrong.

Yesterday there was a lot of waiting. We started our morning at 7:00 AM. I sat in a chair and held Deano (newest best nickname, I've been using it, it's totally sticking, will explain it later) and kissed him and played with his toes. Blair held him too and gave him kisses.

We walked with our son to an elevator and they took him down. We took our infant son and gave him to people who we were trusting to take care of his tiny tiny heart. I cried when we said goodbye, praying that it wouldn't be the last time we saw him.

We walked back and got ready for the day. Decided to go get breakfast. We ended up spending a lot of time in the cafeteria, holding hands, eating food (so much food), and of course, reading.

We were given this pager that could give us updates. We knew when he went into surgery, we knew how he was doing, we knew when he was on the bypass machine. Breathing. Hoping. Reading the amazing posts from friends who were praying, people I don't know who, people who I might never meet. Oh how precious. Thank you. All of you. Oh how amazing the body of Christ.

Deano's godparents came to see us. They came and sat with us, talked with us, laughed with us. I appreciated their love. We could talk about baby boy, we could not, we could go eat, there was no real plan and it was nice. Katharine gave me a big bag of crafty stickers and smash book, I had no idea how much I would need it later. I had made all these plans to bring coloring books and my art journals...none of that happened. Which is ok. It left room for God to use Katharine.

We decided to go out of the hospital to get lunch. I went up to his room to pump, just as we got done and decided to go we were informed that he was out of surgery and we could talk to the surgeon. We did. Everything went well according to him, it would still be a while before we could go see our son. We went to lunch. It was an adventure, but I was thankful for the time AWAY from the hospital.

Then we got back.

When we got to the CICU we were told he was back there and we could go see him.

Walking into his room took...took everything.

He did not look like my baby boy, and I was more than terrified, I was ashamed of myself.

I didn't want to touch him, I didn't want to talk to him, I wanted to turn from that room and not see his open chest or the tubes or the machines or his closed eyes or his pale skin. I wanted to run. I struggled hard not to just start sobbing, but tears leaked from my face.

I went to use the rest room and struggled to bring myself back into his room. I was quiet. I didn't know who to talk to, I didn't know what to say, I didn't know where to go. I honestly, and I am not happy about this thought, considered how to get out of the hospital to get home. I wanted to go home. I wanted to bring him with me.

And I couldn't.

Blair and I...we just sat behind him on a couch together. Nurses rushed around him, monitors beeped, there was nothing we could do for our son. We were very very quiet.

My mom and dad kept telling me to talk to him and I just felt this deep deep shame that I couldn't bring myself to do it. Blair insists that I give myself some grace in this, because I was very tired and cramping more and more. I couldn't bring a chair to his bedside, so I had/have to stand when I talk to him. After Blair saw me swaying on my feet, he insisted it was ok for us to sit quietly in the back ground and let them work.

I thought about Ellie. I wanted her. I wanted to hold her and see her and hug and hope. I wanted to remember that I had a child who wasn't in the hospital, who was "safe", who could hug me and throw tantrums. I just wanted her.

I texted my daddy. I told him how scared I was. I think I was telling my Heavenly Father that too.

If I could have, I would have crawled into my Daddy's lap and let him hold me. But I knew that if any of my family were here with us during this time, I would just completely lose it. He did offer to come, and the offer meant more than he knows.

It was such a reminder of God's love. Blair and I sat and held hands. Just sat together while they worked on our son. And I just told told my Father in Heaven "I'm scared Daddy."

And that was ok.

Things were...so sketchy for a time, and I'm sure there will be other sketchy times. As I write this nurses and a surgeon are draining some of the blood from around his heart because it's putting too much pressure there. I can't see what they are doing. But I am trusting they are doing it.

He was losing a lot of blood yesterday night. At one point, we were asked to step out while they x-rayed his chest. While they were out doing it, his heart beat dropped quickly. We stood in the hallway while an alarm sounded and ten nurses came running down the hallway, all alert, all ready to do what they needed to do for our little son.

We stepped out. I got some snacks for dinner, I'm not sure either of us could have eaten much. I pumped. We just sat. We both admitted to how scared we were...and talked about how beautiful it was that they could do all this for him. We Skyped with Blair's Mom and saw Ellie. I sobbed.

In one week, I have had my second child, been through more emotional stress than I ever thought possible, have found out that people all over the country are praying for us, and heard my daughter use actual words! Whew!

Blair and I couldn't get over how big she sounded! And oh how good it was for my heart.

Things, for me, got better after that. We came back to his night nurses, who just touched my heart. One of them told me she had a friend named Dean and they all called him Deano, and she apologized for calling him that and told me she would stop if I wanted her to. I didn't. I love it. I don't know why, but ever since I keep calling him my baby Deano.

He started to do better. His color improved and they got to clean him up a little tiny more. I'm more confident and ready to rub his hair and talk to him. It still is hard for me to stand by him. I go in little spurts. I rub his head and tell him not to get used to all this attention. I show him the milk I've pumped for him and tell him he needs to get better so he can have some of it. I wait. I sleep. I pray. I write down some of the texts I've gotten so I can keep them forever. I hope.

There are not enough words to tell you how terrifying and shocking it was to see him after surgery. My heart aches for the people who have yet to go through this, and for the ones who already have. I am working on accepting and forgiving myself for wanting to run at first. I am working on seeing myself the way others have told me they see me: strong, but strong in the Lord. I am working on resting more and drinking more water.

Minute by minute. Day by day.

Daddy, Father, Lord, I am scared.

It's ok, He says, I watched my son on a cross. I know this hurt. I hurt too. 

Breathe.

And Praise God, my son is Four Days old.
And those four days with him have been amazing.