A constant battle between awareness and choosing to avoid

Blogging gives me a release. Sometimes when I feel a certain way or feel misunderstood it's therapeutic to get it out. Here's what's been on my mind lately..the brutal honesty and all.

February is a month for awareness about heart disease. Heart disease in women, heart defects in infants, etc. You've seen me post many things about donating, to please wear red, pictures of our journey to hopefully have you remember that this road isn't easy. That's part of me...to bring awareness. Awareness = caring = donations = research = lives changed.

The other part of me wants nothing to do with it. Count me out. Some days I feel angry that I'm even in this category. One organ is effecting my beautiful little girl. One organ made my pregnancy stressful and not blissful. One organ makes me stressed to finish our family. One organ made me miss a lot of her babyhood. It's a sadness I've been dealing with lately. One organ made me not be able to breast feed her. One organ made her have crap on her face her whole babyhood. One organ made me not sleep with her every night..she was at the hospital, I was at the condo. One organ made us quarantined and miss out on summer, fall, winter, and starting to be spring.. One organ makes me feel her hands and feet, mentally remember how much urine output she's had today, check her heart rate and saturations daily, look at her coloring, fear after every vomit...I feel robbed by CHD. Sometimes want to feel naive and live like I don't know. I don't like this reality. It's a mean reality that never goes away. 

Sometimes reading other heart blogs or looking at other kids pictures makes me fear for her. 99.9% of heart moms are a little negative about their child, almost like they are waiting for the ball to drop or watching a "dying" child. I can't and won't live that way..it's not good thoughts for me. It's not fair for her, she has no choice on her life. She's ours and I'm her biggest cheerleader for an AWESOME and full life. 

Knowing we can't have a transplant in this science age (that's why we need research funding and fast)...this heart is all we have for now. I can't live like it's a car speeding into death. I won't. I trust The Lord with our lives, he turned our last hopeless situation around. 

Sometimes I want to sit down with those moms and say "all your other children are dying kids" all completely healthy people are "dying people"...why live like you are an exception? Nobody told you when your healthy child was born that they get 95 years or 10, it's not your answer to know. Your mind thinks the two are seperate, were all dying people.

There will be nothing I tell London she can't do. If she wants to play a sport...go right ahead. When we were pro life in utero, we are pro life out of it. 

February is a double edged sword for me..we desperately need awareness and research but part of me doesn't like the category that puts me in. Call it rude if you will..it's how I cope with it. Please donate, know that these kids are 1 in 100. It's a brutal reality and one I care to fix but also wish I could toss. Xo

Trauma and my smiling Bible

Living in these last 7 months was like autopilot survival mode. You wake up, do what you have to do..another day down waiting for surgery and "going home".  I almost was numb, I had no emotion most days. I don't think I even cried when I should have. Every single thing she did I had to watch for. Children's has a safe at home program that has red flags to look for. Faster breathing, vomiting more than twice a day, fever, change in color, anything that is "different than her norm". We checked her heart rate and oxygen saturations everyday, we weighed her at night. Every Friday or Monday we went to clinic to have a doctor and the hospital put their eye on her. Throw in many trips that something was critically wrong, we would stay overnight..for many nights. One time it was worse than we brought her in for. All the things I was taught to look for..happened. Her heart failed. 

We finally got surgery and were considered high risk all around the hospital. The child who was so unpredictable. The surgeon who loved her and would do surgery..knowing her risk. She was in his category of higher risk for mortality. I signed papers saying I was okay with that. 

I remember laying there that night before surgery knowing tomorrow the odds could be she is no longer with me. We could have lost our battle. The battle we all gave our life for. 

She did amazing. Out in 6 days and came home. 

We all struggled. London wasn't doing well with feeds anymore. My day was trying passy dips, baby food, bottle, playing in food, putting milk in syringes and squirting with her passy, sippy cups, etc. with nothing but screaming or vomiting after she gagged at me. I cried for lots of reasons. I was grateful, sad, beaten...

What in the world did I just go through? I can't believe I did it. It's trauma. A car wreck of emotions for 7 months.. Just not outwardly visible. 7 months not counting the months of pregnancy knowing what we will face. The 13+ times I was told I could abort. 

I felt moments of grief in my jubilation. I witnessed a miracle but many moments when little things are hard (eating), I grieve the loss of a "healthy" child. Grief all the while being thankful with all my heart. What a double sword. 

I'm not a negative person. I don't live like that. You'll never see me live like that. London will be treated and live normally, like I never knew of her weak heart. 

I needed to get it out..it's not healthy for that much trauma and to keep it in. 

She's a gift from Jesus to me. She gives me no choice than to learn patience, thanksgiving, mercy, pureness, "stronger than the grave", sympathy to many with depression, sympathy to many with helplessness, sympathy to all moms. 

She's a gift of all the hard lessons in life. I get it all at once in a smiling beautiful pink package. For that, I'll take trauma everyday for the rest of my life. 

A new world from a new life

Before I had London I could have never imagined the life I have now. Who I would be now. I worried about the silly things. My life was so complicated. What would people think? What's everybody else doing? How could I have that? What does my future hold? What if? Wonder when? Wonder what they will do? Typical keeping up with the joneses life worries. 

I've been changed. My world is different. 

The things I've seen, the people I've met. The children I've seen who've been taken home to Jesus so soon. That "look" on parents eyes in the ICU. Holding on to numbers praying they are in a safe range. The conversations I've had. Rounds in the morning and the look on the doctors face that you are in a critical situation, no dancing around it. The rushing of doctors and nurses into rooms because the child is dying. Coming in a room one morning to seeing empty beds, and they weren't sent "home". The feeling I get every time London gets an echo or a test run. The anxiety of the things I was told about London that turned out not to be true. The pregnancy that people were scared to talk to me about because it was an awkward subject. The fear every day that I would lose her or she would come early. The schedule in my mind of her surgeries and our life in and out of the hospital. The worry of complications and things that weren't  caught before. Leaving my husband and house for 6+ months and giving up all of my life to care for London. Not being able to take her out in between surgeries in fear of getting her sick.  Worrying about heart failure..on the daily.

I am not too cool to admit I already have post traumatic stress disorder. Yes, an anxiety problem. 

Children's is such a miracle place, but also makes me so nervous walking in. Its the place I left every night praying my baby would be there by morning. The place where all of this happened. The place I came to hand her over to a surgery that is VERY risky and theres no way to know how she would do..we would have to "wait and see". The place I've taken her back a FEW times since going "home", every time I worry if this "is it". 

Every day in the condo I take care of London and patiently wait to her NEXT surgery so I can go "home" to Oklahoma and have my life again. I miss my house, I miss running around town, I miss my friends, I miss eating out with my husband and family. I miss getting dressed and seeing people other than doctors and nurses. I'm so ready for us to be home and have a sense of what this world calls "normal". Normal to me now days is not being trapped by hospitals and medical bills...and that's okay. 

We've been through a lot, but are so blessed. I know many families personally that would LOVE to be in our shoes. We have our baby and shes doing very well. I'm blessed, grateful and being very honest..proud of myself for walking through burning hell. Straight up terrible things.

We walk through burning hell again in a few short weeks for her Glenn. The Glenn is by no means as serious or traumatic but all I know is traumatic. I don't know any open heart surgery that isn't. 

I'm still the same ol Chelsey..but so much simpler.. I love being a Horkey. I love a good laugh. I love to smile. I love being a caretaker. I love myself. I love to hope. I love being a friend. I love the life of London. Simpler in the way of my time and energy. 

Same Chelsey, just have been stabbed quite bit but stitched up again. I guess London is not the only one that will walk away with some scars. Good scars. 

What it's like..

As I've had a chance to adjust to the ups and downs of the CICU I've learned a lot about life, a lot about love and a lot about  myself. 

Now that things have slowed down and I can even think a normal thought I reflect on how long yet so short these 3 weeks have been. This journey sometimes has already felt like a lifetime."

The night before surgery I remember holding her and just holding back from bawling. I knew that tomorrow she would have her perfect chest scarred. Her heart would be stitched in all different places and she would be either with us or not with us. Below are pictures the night before with her jaundice and chest being rubbed for sanitation purposes.

I knew her chances were great but there was a chance I would never hold her again. I would never smell her smell again. I would never feel what it was like to see her look at me. I bawled leaving the hospital and just prayed "heal London..and I hope it's with me."

Surgery day comes around and I could truly feel the magnitude of prayers for us. I honestly believe I couldn't have done it without it. I sat in the family room with family and just zoned out. I honestly don't remember what I even thought about it felt. God gave me an "out". When it was finally over we were allowed to go back and see her. London did excellent during surgery but horrible late that night and throughout the night. I looked at Trey and cried saying "I just need to wake up and it's tomorrow." Im not going to put it lightly, we were brought to hell. Having 15+ people surrounding your baby and her losing so much blood they bring in 22 transfusions is nothing I will ever forget. The rush and stress of the room will never leave me. Clearly as you can imagine we felt so helpless and are basically begging God for this to go well and turn around. 

My first big meltdown was the day after surgery. I walk in and she looks like a totally different baby. Most moms would probably  take pictures to remember what the baby went through..I will never want to remember that. Her personality was taken from me. Her chest was still open. No matter how many doctors tell me otherwise, the feeling of "I did this to you" screams at you all day. Your child looks that sick and it's a horrible mind game. I cried at many reasons: she's temporarily "gone" from the sedation, she's so terribly sick from a heart that will never totally be "fixed", and I miss her. That day is a hurt I will never forget..How much I missed London. 

Every time a doctor or technician comes in her room to look at her my stomach drops. A Hypoplastic heart has robbed me from thinking "that wouldn't happen to us?"..now I think all things would happen to us. I love her so much and have already known way too many times the feeling of "what if she's not here tomorrow?"

With a heart baby there are many emotions. The main emotion I feel is fear. I will admit many many times I am scared of London. She's such an angel and this world tells me every second I should be scared of her. A friend of mine that has a hypo-plastic  baby sent me a message the other night and we were talking about this very thing. She used to remind herself of that precious verse.."I have prayed for this child and have been given the desire of my heart."

I know for a fact Jesus knows how much I love London, how much I want London here with us and the desire of my heart. The desire of my heart has already won many battles medicine told me were not going to be won. 

London's birth story

What a week! I have so many emotions all at the same time...first I will begin on how this beauty entered the world. 

Tuesday night around 6 pm Trey and I walked into UT Southwestern labor and delivery to start induction. I had a precious nurse Nikki that I soon became besties with. We both have a love for shopping and talked about our favorite Etsy stores, baby boutiques, and life in general. She was perfectly what I needed..low key and an instant friend! They gave me some pain medicine and an Ambien to sleep and the morning we would start the process! Around 7 am they started my Petocin drip and things went relatively slow. Our new day nurse was Maria and she was just as precious. She was so calming and helpful. We asked her around lunch what time she predicted and how fast she thinks London would come..she predicted 8-9 pm. 

A few hours later around 2 pm Trey noticed in my face I was experiencing pain. My epidural was working but something was changing. I started to get "the shakes". My nurse checked and said "we're having a baby!" All nurses rushed in, NICU and Dr. Santiago were setting up. Dr. Santiago had to tell me to stop pushing because London was COMING! We didn't push long at all. 

At 3:31 we heard the loudest scream and sweet girl was thrown on my chest. They immediately took her off and NICU assessed her. They put her by my face and took her out. Immediately in the NICU they started her prostaglandins and incubated her to be taken to Childrens. 

After birth I had really bad shakes and was in quite a bit of pain. They took me to postpartum and had to give me medicine to basically knock me out. A few hours later I was talking to my mom in the room and the nurse said "Michelle..Trey needs to talk to Chelsey"..

Trey came in with the red swollen eyes and a white piece of paper. I immediately thought London had already died. Trey sat on my bed and told me that her pulmonary veins are small and this doctor doesn't think she's life sustaining. I went numb. No tears, because I had none. 

Trey laid down next to me and two hours later a nurse from Childrens that was caring for London said "this baby isn't that baby..please hold out hope that that is not the case.." 

Morning comes and two doctors come in and said London did excellent overnight on her own. Her flow through those small pulmonary veins is excellent. Although they are small they don't compromise her in any way. They said they are so sorry for our experience and they can't control people's attitudes or what comes out of other doctors mouths. 

Trey immediately gets to hold her and he crashes. Emotionally and physically all he wants to do is hold her. She was "brought back to us". 

Each of these days we have been up at Childrens  and London is doing "good". She's got beautiful color, her stats are great but her labs are what shows she needs her Norwood. I hate when doctors come in or we call in the morning. I hate every time they say she needed a blood transfusion. My stomach drops and I have held my breath more than I can count. 

Trey has been amazing. He takes care of rolling my wheelchair around, helping my every move, helps me stand up, and has been PRECIOUS with London. He's so good at managing it all. 

People ask how we are doing..we're surviving. Its such a hour by hour day. I hold her and just plead for her life. She's gorgeous and so perfect. It's so hard to look at her and know her heart is so wrong. 

London has taught us the miracle of life, for on our knees prayers, and that this world has great people. All the people that have joined Londons heart, come to see us, sent us things, and cared for us without even knowing us. Most people in this world have great spirits. 

Thank you for your prayers. This next week makes me nauseous to think about even though it will save her life. It's such a chess match. 

We adore you beautiful girl, your birth was such an answered prayer and miracle. 

No I don't hear his voice.

Lately I have had such a mind game with myself, God and others questions about how we feel about God in all of this...

Questions from other people about "Are you mad at God?", statements like "God gave you this because he knew you could handle it" and my own questions of "what are you doing? Why this?"

I am definitely not perfect. There are days and actually multiple days where I don't pray because I just don't know what to say. Sometimes I feel like I don't understand and so I don't know what's "right" or "wrong" to pray for. 

The statement "God gave you this because he knew you could handle it". I do have pit bull mommy genes for my own reasons but I didn't like the association between God GIVING me a sick child. I think this world gives sickness..God heals to show his glory. God allows things, I don't think God GIVES hurtful things. Yes, I was bred to be a fighting mom..but I don't think he gave me a sick child for that reason. 

The closest I ever felt to God was right before I got pregnant with London. I was so whiney and begging God for a child. I turned to every verse that had a inkling of "I have plans for you" and just felt as though he would sustain me each day with me having hope of a future.I took that pregnancy test and shook and sobbed..I felt his presence. It was almost like a "relax" I know what I'm doing..way more than you. 

Ever since finding out about London I have never once been mad at God. Yes, I've been frustrated like he stepped away from me..but no anger. The truth is I probably stepped away. I stepped away in an effort to try to understand all these questions..which is doubting and not showing faith. I don't hear his voice but I've always felt these things very strongly. 

I gave you her. 

She is here for a reason. 

Your life isn't over, this doesn't define your life. I have so much for you. 

Yes I'm entirely stressed of all the scary things. Her having more health problems, her length of life, etc. But never once have I been mad. 

As I approach looking into her eyes in a few days. I hope all those feelings flood me time and time again. I hope my walls of protection come down and I trust in him each day for strength. 

I am now in London mode. Her safe birth, surgeries and care are my number one. The best interest of that little missy is my summer. Never once will I be mad at God for that. 

"Lord you created me. Perfectly shaping me. I know my heart is safe in your arms. Lord you know everything so when I feel afraid, I put my faith in you. This life is yours to give so with each new day let it bring you praise..For I am fearfully and wonderfully made. Before I was born you numbered my days. The story is yours, I'm just a page." 

Precious girl, here we go! Next summer we will have you in a cute swimsuit and I'll squeeze you, see your zipper scar down your chest and say "dang...we made it. What a HELL of a ride." 

Real mommy of Dallas

We made it! Late last night we paraded all of my stuff + all of London's crazy loot into the condo. The condo is precisely 8 minutes from Children's Medical Center. Trey has a tiny sliver of closet for if she's born early he already has things here...and can just jump in a car!

I feel so overwhelmed with thanks to the Bartees. All we had to bring we're clothes and baby things. It has inspired me so much to hopefully one day repay all the blessings we have been given in a time of need. I hope somebody else going through a life changing event can feel this level of friendship. I hope someday I am as giving and gracious as this family has been to us. I hope it inspires YOU to reach out and serve others in any way you can.

This is a little snapshot into the new Horkey condo and where we will bring this precious little girl "home".