Feeding battle..which is actually a battle we all have.

As you all know London's aversion to feeding has gone on...almost 10 months. 

The last time eating was a pleasurable experience was in the womb. She never got to eat her first week of life. That's when babies get the eating thing down! When she was able to eat..she never tasted it or worked for it. She finally got to taste it and vomited constantly. Eating means it came up..try to feed that same taste to her? She's not stupid..she just wouldn't do it. She knew it would come back up and burn. The taste was ruined. 

We tried every bottle at babies r us. Every formula. Every concoction of how to make it different...nothing.

Try teaching a 8 month old new tricks she should've learned week one...try almost saying "okay, so now you gotta work for it..and like it...which you never have" 

I spent countless nights and days crying over her eating. Something seemed so evil about me not being able to feed her. That's what mommies do. I felt robbed. It stung like a knife to see moms feed..or breast feed (but that hurt will always be there). It was my deepest desire to just feed my child. I feared for the future. I feared that she would one day look me in the eye and feel anger that I didn't try harder for her. I didn't push and try every avenue for it to not go to surgery and have a tube/scar along with her others. 

Satan will always find ways to sneak guilt into me. Her feeding in ways was a big way I felt another guilt. It was another way he could sneak thoughts like "look at this other scar...you did this to her." 

It would be mountains and valleys. Some days I would be okay that it's not working..because we've been so blessed 

with many other things. Some days I was every other word but okay and was point blank furious. I'm not proud of my behavior and actions some days. 

One night in my brokenness I prayed "God, please help her THRIVE..I've made this about me..please make her THRIVE." I hoped that would envelop all that was the problem.  

She slowly started to eat. Eating slowly became easy. Drinking was now impossible. It seemed like we were drowning. So much progress but in the same place. Still needing a tube.

I pulled the tube for the second time with all hopes in my heart it was the very last time. The first day she just ate..all formula was snuck in food bites. That night I felt defeated. It still wasn't enough to keep it out. 

The next morning it went about the same. I called Trey so defeated that we can eat, take medicine but no liquid. Liquid was going to be it..the tube would have to go down again. When would the cycle ever be broken? 

She went down for her morning nap and I thought to myself...she likes food...I snuck formula in food...try liquid formula/food? We have a mini blender and I put all her formula for a feed and a squeeze of her favorite baby food. Blended that puppy up and tried it...she downed all but 2 oz of her feed..which she then completed in food. Tried it again that night and she took even more. 

Another miracle. Another desire of my heart fulfilled. I worked DAMN hard for it. I now have a PHD in "the misery camp of feeding a aversion baby". 

99.999% of us don't have a feeding aversion..but guess what we do have? A surrender aversion. Every time I've given her over..he rewards me.

Give over your stress, your hurt, your desires, your sins, your mistakes..your starving for success..I promise the one who created you knows exactly the way. It might not be all the avenues you've tried. Keep trying for what you want and need. The first, 500th or 10 months worth...14+ times a day might not be it..but one day he will give you just the right ticket. 

Keep trying. He listens and one day you will finally be full, satisfied and thriving. 

Xo

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".

Hearts, half a heart, hearts and more half a hearts..

Lately our little family has gone through so many emotions. Some good & some bad. The past few weeks its really hit us how fast she will be here. We are so excited to see her but I don't have the natural feeling of a mother "just wanting her out". I go to doctors appointments and hear all the women say that and I just cant relate. I also can't relate to complaining about pregnancy. I know I can't stay pregnant forever, but sometimes I want to..just to know she's safe. Other days I want her to be here so some of the things people say will stop.

Being pregnant with a baby like London has taught me so much on how to be a friend to people in times like this.

We are SO grateful for all the support, prayers and people wanting to know everything about London's progress but sometimes people giving you random information, comparing health stories, saying they understand, or whispering when they talk to you like you are a whimpering flower with such a pitiful story is frustrating. Feeling "pitiful" is the worst. Theres nothing we can do about it. It is sad and unfortunate, it is absolutely not what you want for anybody..but it's already happened. I don't need to sound ungrateful or sassy but its just honesty. Too much is too much and honestly nobody knows how much we talk about in doctors appointments. I know TOO much.

Trey and I have had many conversations lately on how we've tried to almost shield ourselves from the emotions these next few months will bring. Its impossible but the human heart tries to build protection from hurt. We've got big windows for hurt coming up. I move to Dallas on May 17th to start my journey of being London's mom there. I won't move back to Oklahoma City until she is very clearly stable after her second surgery, the Glenn. It's hard to prepare a marriage for only weekend visits. We are 100% game for all we need to do for her best care but we also are stressed about missing each other. He's my best friend in this whole world and we have so much fun together. Our lives will for sure be different but it's our calling to give her the best care. I need to be close to the hospital and he needs to be here for his job. We will do it and come through stronger. "For better or for worse, in SICKNESS and in health."

Lately I shut myself off from information. I don't want to hear about hearts, I don't want to watch shows about hearts, I don't want to talk to anyone about this anymore. I have exhausted myself with all of that and you know what?? Shes not here yet so who knows if or what will happen. Talking about it is wasting my good energy that I need to handle all of this. Now is time to spend time with Trey, my puppy, get everything ready for her arrival and soak in days away from a hospital. I have around 4 doctors appointments a week (stress tests included) and that's where I leave the conversation of hearts. London's story will be different from all heart babies because every human body is different. Time with doctors is enough about hearts for now.

So, if you follow me on Facebook, Instagram, etc. you will see lots of husby/puppy lovin, swelling pregnant body, moving, and nesting! Lets worry about those hearts/ half a heart in about a month...

Lets get real here...

Long time no post right? This past weekend was my first shower. While we were in town for that we did maternity pictures that were a gift from a lifelong friend, Tara Hobgood Photography. She captured our first "family" photos with our little Milly..which became our first Christmas card. My shower was more than I could have ever asked for. Beautiful gifts, beautiful decorations and even more important, people who have loved me for years that put so much time and effort into making it that way. The time with family was great, the time soaking in being pregnant was great but something sparked in me as I was in the bathtub on our last night.

I'm scared.

I'm scared of MY heart. Sounds selfish, but it's honesty. I can feel myself getting scared of how I will feel. How I'll feel when I see her...how I'll feel when I touch her...how I'll feel when they take her away for surgery. How I will feel if its not going to go the way I want it to.

It's hard being called "strong", "inspirational" and "wonderful" in all of this when these emotions hit. I appreciate that so much but it would be a lie to say I never feel like this. It could last for minutes or days.

My prayers every day and night lately are for that to go away. I don't want that emotion now.

While I was in TJMAXX today trying to distract myself with something I love, I think The Lord "spoke" to me..if you believe in that sort of thing.

The memory of me nailing a piece of paper to a wooden cross at a booth at the Oklahoma state fair 3 days before I was pregnant with London. It felt such a relief to let go of "trying" and give it away. The paper said "a baby for Trey and Chelsey"

I haven't thought of that since it happened actually..but I did today.

I gave it up once, and hopefully I can give the worry of all of this away. I never ask for anything on these blogs, and its uncomfortable for me to ask, but I sincerely need prayers and support.

"Even though I walk through the valley of the shadow of death, I will not fear.."

A dream is a wish your heart makes..

Several people have sent me dreams they have had of London. I wanted to write these down and share the similarities so I and London could always remember.

1. This person was in a hospital and there was lots of shuffling around. Many people running around and lots of sound. They turned around and in a room was a little girl, blonde hair, coloring so peacefully. They woke up and knew it was London.

2. This person was sitting there talking to a little girl in a pink dress. Casual conversation with a happy toddler. Woke up and knew it was London.

3. This person met London and The Lord told her "she is perfect" she is a creation of being "born again".

4. This person said that London has changed their life and made them want to be different. They prayed to see her face and they saw a little girl in their dream that night.

Sweet girl,
I hope you are able to watch Cinderella and sing "a dream is a wish your heart makes...when you're fast asleep!" Many people have wishes you are going to be okay. Xox

Not mine.

This past week I was sent a devotional that really comforted me as well as reminded me that I can't control London's life.

Today a friend of mine that has a son with Hypoplastic left heart (London has right) is in the cardiac ICU with her son, Beckham, after he has done so well for three months. He started looking off and not eating yesterday and they took him in. The echo showed he had a small heart attack that has started a leak in his tricuspid valve. He was put back on the ECMO life support machine and they are waiting a few days to see his condition. Here's a mama that had a son smiling and perfect a few days ago and now he is back on the ECMO.

This whole heart journey is a roller coaster. I am positive because..I like to live my life happy. What am I suppose to do just shrivel up and be depressed my whole life because my child has a heart problem? That's not fun for me, my friends, my family or my daughter to have a negative stressed out mom. I don't want that pressure on her. I dont want to push everyone away because its not fun to be around me. Because I am positive and wish the best for my girl doesn't mean it's not terrifying. I am scared and literally dont know my life story at all each day. my life could go so many ways. London honestly takes life day by day. Mama takes life day by day. I have a feeling each birthday and milestone I will be overwhelmed with "Whew! We made it to ____."

The devotional is this:

"I know your heart and I know how much you love those close to you. I am your creator and giver of every good gift. I have given you loved ones to share your life with. But you, my child, must remember that those you love ultimately belong to me, not you. I didn't give you those loved ones to tear you apart or to give you a fear of the future. Like Abraham with his son Isaac, I need you to open your heart and give them back to me. Trust me with everything you need regarding them. Place your hand in mine and trust me to be with you and your loved one with all this life brings."

At the end of the day, London belongs to Him. Beckham belongs to Him. If he feels that the way to heal Beckham or London is to take them home, that's his plan. I know that would rip our hearts out and hurt forever, but one day we would see His face and understand why. It's called faith and trust.

Until my daughter has her own story, I'm going to believe she's going to pull through and life a long and fulfilled life. Nobody can take that gift from me as I approach her birth. London is a fresh start and I have great hope in her.

This Thursday we have our last ultrasound for her. The last time we will see her sweetness until she's born.

Time to soak in being pregnant with her, get on this horse and hope the best for her. She can do it.

Today and the next few days, say a prayer for little Beckham.

Frequently asked questions

Through this whole process there have been a few questions that I have been asked a few times. I totally understand why. This diagnosis is so rare and complicated that its hard to understand how it all works.

Since you know all this now, why are you not doing a surgery on you with her in utero?

There is that option. You usually have to go to Boston to have that procedure done and there are many risks for not only myself but London. Her chances are much better outside the womb. Our surgeon in Dallas is one of the top 5 CHD surgeons in the nation and his success rates are over 85%. I would much rather give my child those odds than something that is "risky" and "new".


Will London be born naturally or a scheduled c section?

There is no medical reason a Hypoplastic baby would need to be taken by c section. She can be born naturally no problem. I actually pray that she will be. That will allow me to be over at Childrens with her sooner and not have surgery right when my baby does. This would knock off one stressor. Of course it's all depending on how I do. I pray I make it to her 39th week (when they will do a scheduled induction) and can deliver her naturally.


Will you get to hold her? how soon will they take her away?

Trey and I will get to hold her and take some pictures with her for a little bit if she's looking stable. She will immediately be sent to the NICU to stabilize her before her transport to the CICU at Childrens. She will be in my delivery hospital for a few hours (if she looks good) and will be at Childrens the same day. Yes, we will get to touch her and hold her, take pictures and then she will be transported.


How can she wait a few days until her surgery?

There are two holes that all fetuses have in utero that is allowing her to get blood flow just fine right now. Immediately in the NICU they will start a tube through her belly button that administers medicine that tricks those two holes to stay open. The holes naturally stay open for a few hours. They will take extra caution and start the medicine very soon. The medicine makes her body think she's still in utero. Blood will flow through those holes and she will have adequate flow. They will monitor her with echos, oxygen levels, feeding tubes, etc. until her surgery a few days after birth. She will always be watched for every little vital sign. The medicine and nurses will be keeping her alive until her surgery.


After her birth they will do more testing a and watching her to make sure she had no unseen genetic disorders or all her bodies functions are working properly. Her chances of having anything else unseen is 2-3%.


After I am released from my labor and delivery hospital I am free to be over at Childrens with her. My doctor mentioned yesterday how I can have a "free pass" to visit Childrens while I am still admitted to the other hospital. I guess they will take me by wheelchair and a nurse to take me to see her if I would like. Lucky for us there is Skype, for many reasons.


Will she have to have the THREE surgeries?

Yes. The Hypoplastic heart surgeries are to have a series of surgeries to create the heart to function as a single ventricle. Your ventricle that is underdeveloped will never be able to adequately function correctly. You are working on a baby so each section is to do a series while the heart gets bigger. They are called the Norwood, Glenn and Fontan procedures. each are named after the doctor that created them. All three are a chest surgery, none go through the legs. This also creates less stress on the heart. She will have to have the three, and hopefully no more.


Will you be able to breast feed?

Yes, but after her surgery and she's strong enough to eat. I will pump and save to then teach her the bottle. If she is not gaining they will change her to high calorie formula. London must gain weight good and continue to grow. Logical reasons of that are developmental, heart growth and strength. She will be watched big time for feedings and gaining. Obviously in the hospital they will check those things but I will also check when we bring her home. She will be weighed every day and I will check her pulse oxygen levels.


How did this happen?

"Bad luck" is a common word you will hear for this diagnosis. The main culprit is her tricuspid valve never developing and her heart received very little blood flow in some parts. No flow, no grow.

What's her heartbeat now?
London's heartbeat is usually 147 the past few weeks. That is what normal babies in this stage of pregnancy are. Her heartbeat shows no sign of difference.

I might have left some of your questions out but I find that these are some many of you wonder about. I hope this helps you understand better and understand our game plan for getting London here!

If you just believe...

We are currently on the road back to Oklahoma City. Today could not have felt more long but I wanted to write some things down so I don't forget. I want to encourage each of you to ask specific prayers.

Listen to my prayers this past week and how they were answered today.

1. Please allow London to face forward so they can see her heart better.

Last time she was facing backwards and they had to see things through the shadow of her ribs.

Today: when we started she was facing forward and in "great position". Answered.

Two hours into it she flipped around..and I would too. That's too long to be stared at ;)

2. I prayed for her aortic arch. I wanted God to give me a better answer.

Today: Both doctors thought that it looked skinny and that there was no reason for concern. It could still be interrupted but its leaning more towards a coarctation. Now it's a better answer. Answered, in his way.

3. For her ultrasound, I wanted to see more of her face. I prayed for her to move her hands away from her face.

Today: full face shot and saw up her nose. Ruled out cleft lip, mouth problems and she was swallowing. All signs her mouth is formed correctly. Less concern for genetic disorders. Answered, in his way.

4. Heart problems can correspond with kidneys. I wanted answers on kidneys.

Today: as she was swallowing the fluid the nurse checked the flow of fluid in her stomach and her kidneys..all functioning perfectly. No concern for problems with kidneys. Answered.

London weighs 2.5 pounds. She's a little girl but still in average range! She's moving much more than the safe range which is a great sign for her muscle function.


God doesn't just hear "general prayers", he hears prayers about kidneys and babies positions...and answers those who BELIEVE he will.


“Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations.” – Jeremiah 1:5

Headed to the big D

Tomorrow we leave for Dallas for our big appointments Wednesday. We start with a heart echo. This time London's heart is big enough to see the full situation. Last time we got a diagnosis but two parts of it were in question because it was too early to tell. This time we will learn if her aortic arch is interrupted or not. If it is not interrupted the aortic arch will have to be widened as it is too skinny. Interrupted, it will be widened and connected to the bottom of her heart. We will sit with the doctors after they determine and discuss the process of surgery that they already explained. This time it will be definite and know which part will be added on to her Norwood procedure. I pray her aorta is better than expected and her hypoplastic right ventricle is all she will deal with.

After lunch we go straight to the maternal fetal medicine doctor where they will do a full ultrasound on London. This is just because she will be delivering London and have not done an ultrasound for herself. Our doctor here has done frequent ultrasounds on London and has updated all of our doctors. I hope she's much more cooperative this time and we can see her full face and more of her body. We will meet with that doctor after to discuss my care, date of move to Dallas and London's delivery.

I am feeling pretty good. This whole hypoplastic journey has taken away my worry..worry makes me sick and nothing changes. Earlier today I was sitting in my chair after eating my tasty breakfast and just called out to God. Give me strength, give me hope and give me eyes for the future. Don't look at the now or even the near future and fear, we will pull through. Give London strength, give London health and send us an angel. An angel to make their way to Dallas this Wednesday...


"When sickness and death are at my door, trying to steal from me...They cannot take what I've already laid down at Jesus feet. You are my treasure."

Fast moving train

This next Wednesday we have our second appointment in Dallas for London. This time we will do another ECHO (heart sonogram), meet with the pediatric cardiologist,a full sonogram with our new maternal/fetal medicine doctor that will deliver her and also a consultation with her.

As I approach my third trimester I have so many feelings running through my mind. This pregnancy seems to be flying by for me! I really am amazed at how fast she has grown and how fast she will be here. I keep telling myself to enjoy every second because its going to be here before I know it. Moving to Dallas in a few weeks and this whole process speeding up is pretty soon.

So many people ask me how I feel about her delivery day getting closer. I really try not to think about it because I really dont know how I feel. Half of me wants to keep her in there because she is doing so well. She has those two parts of her heart open (in utero) and right now its allowing her to live just fine. Half of me wants to get our show on the road and stop anticipating it. Its hard to anticipate all of this. How can you anticipate open heart surgery for your baby? How can you anticipate being in the hospital next to her like that? You can't.

Like my previous posts, I talk about the fears that creep in. I don't know how this will all go, I hope for the best and know that it is all in Gods hands. My humanly way is to want to keep her in there so I can control how I feel. I guess I could answer that question with "I dont know..."

Matt Hammitt that has the son with a hypoplastic heart (previous blog post about All of Me) wrote another song that has been great for me lately:

"I want to hold on, because I'm afraid...
I didn't ask for it to be this way.
Somehow I found myself caught in the gray.Reaching out for fear, running out of faith.
You know what I don't..so help me to let go.
You're in control, so help me to let go. I want to let go.
I want to let go of what I can't change, because I can't wrap my mind around your ways.
I've got more questions than I have answers these days. Please don't let my suffering go to waste.
You know what I dont, so help me to let go. You're in control...help me to let go."

Next week will be a big step. I really catch myself praying everyday that it goes well. I know she is growing okay but I really want her heart to be doing okay. I would love for her aortic arch and aorta to be better than what they "couldn't tell" last time. This time they will check and see if it is just skinny or if it is interrupted. All you who are praying, I would love for a very specific prayer...London's aortic arch to be better than expected. Please prepare Trey, his family and my heart as we go through another whole day of analyzing London.

I saw a cute thing on Pinterest where the girl put up notes on each week and how the pregnancy is going. I just recently started doing weekly bumpdates, but I thought this was cute to start now in the final stretch. There are alot of things to remember about this pregnancy with London, but this is a fun way to remember the little things.

How far along? going on 28 weeks

Total weight gain: up 19 lbs. (yikes)

Maternity clothes? yep -  have been since about 12 weeks!

Stretch marks? none yet (knock on wood)

Sleep: I toss and turn about every hour.  My hips start crushing if I dont switch sides every now and then.

Best moment this week: London had the hiccups.

Miss Anything? Nope! I have loved being pregnant.

Movement: LOTS! she is a fiesty little one. Mostly after cold water, a meal or right when I lay down for bed.

Food cravings: Chocolate milk.

Anything making you queasy or sick: Not anymore..thank goodness! If you asked me that before 15 weeks I would say EVERYTHING!

Gender: Girl

Labor Signs: No
Symptoms: Feeling pretty great! I definately popped around 25 weeks!

Belly Button in or out? in but VERY flat.
Wedding rings on or off? off, bought me a temp at Dillards! ;)

Happy or Moody most of the time: Happy! Maybe ask somebody else ;)

Looking forward to: kissing her foreheard.

All in all, I am doing good. I have a peace, but I am scared that all this is coming so soon. Gear up mama, you got a heck of a ride and a little charmer to fight for.

labels and hopes for you.

Dear London,
Today I had a doctors appointment and outside the door I could hear the doctor say "this is the lady with the hypoplastic right baby", my mind was tough for me but hurt for you. I didn't like that someday you will hear that with your own ears. I have several hopes for you but one of the main one is that you grow up without labels and fears of what you are.

1. I hope you look at people as people. Nobody has a label. All of us are human and are just as valuable in this world as you. No human body is perfect.
2. I hope you never fear because of what people call you. You do have a serious heart condition, but that doesn't mean you are less. It doesn't mean you won't do as much as them.
3. I hope you have an extra love for people that have struggle. I hope you don't judge or get irritated at those who don't...not everybody knows what struggle is. This is your life, they have theirs.
4. I hope you don't live in fear or worry. I am going to raise you the best I can without fear. Again, none of us know our life expectancy...you shouldn't worry about yours.


I know you will hear many things in your life about your condition. I pray you don't see yourself any differently. Don't ever feel less than. I hope you love people of all sorts and that you never label somebody. You are a little girl, not a hypoplastic baby.

My hypoplastic baby is a little girl, she will be born a miracle just like any other baby.

Love,
Your mommy

before London, my God will come through ALWAYS

I have struggled with putting this post up for a while because it seems like such a personal time to us. Before London came into this world, I worried about becoming a mother. I knew I was going to marry Trey but I didn't know how fast the baby bug would hit me. Right after we got married I really dreamed of a family. I wanted to meet ours. I have always been curious about my role as a mother. I took mental notes my entire life on what kind of mom I wanted to be. London didn't come about in 5 minutes, it was a sweet journey until she came into being. I can't say that we had lots of "trouble" because I know very many do, and I don't like to make light of that...but it surely was not an immediate thing.

The month before we found out about London there are some things that have stuck out to me that God has really reminded me of since her diagnosis.

1. I put this song on repeat that month..Always by Kristian Stanfill. The link is below if you would like to listen:

 

"My foes are many, they rise against me..but I will hold my ground. I will not fear the war, I will not fear the storm, my help is on the way. My help is on the way.

O my God, he will not delay. My refuge and strength, always.

I will not fear, his promise is true...my God will come through, always."

 

This song seems to be part of who London is. Funny how he let me meditate on it before I even knew of her.

 

2. It was the first month in our new home. We successfully built our house, we decorated it how we liked, we started to create new memories. We were able to get settled and find out about her life there.

 

3. I took the test and found out we were getting blessed with her the DAY before we met our precious niece. The next day after finding out we were going to be parents we held a sweet newborn. I remember looking at that sweet new baby and holding back tears. I loved her so much instantly, how would I feel about my own?

 

 

4. We found out that London would be due in June, our wedding month.

 

 

 

 

 

 

 

I want to encourage all of you who are "waiting" on something. I encourage you to wait and see. His plan is so much better than yours. No this is NOT my plan for London to have a life threatening illness, but its his.

 

At church this Sunday they played "Always" and I was taken back. No matter what the story is for London, no matter what the end result is...she is here for a sweet reason. I am excited to meet her and find out why here, why this and why you? We love you.

sincere thank you, hug through the screen.

In the past few weeks Trey and I have felt so overwhelmed at how generous all of you blog readers and friends have been. Its been so nice to hear from the people we have, get all the encouragement we have gotten and feel such love. Our families included!

Each of you brings a smile to our face as you tell us you are praying for our baby, or even just "thinking of you!". I wish I could find a way to tell each of you how much it means to us. I could squeeze your neck and most likely get teary as I sincerely tell you thank you from the bottom of my heart. Sickness and negativity have a way of making you feel so alone, we do not feel that way. Every minute I have a down moment, I seem to get a text from a friend or a facebook notification. I think God knows how much it comforts me to know we have an army. I know I cannot do all of this alone.

I will not be able to explain how much it warmed my heart to see all the people who offered their homes in Dallas. The family (I wont say their name) that offered their townhouse 8 minutes from children's for as long as we need it...completely furnished. To have the weight of finding a place to live for 6-8 months in Dallas taken off was enormous. Having family in Dallas is so comforting, but also having a home of our own...a place to bring a screaming precious miracle newborn home..is nothing I could ever think of thanking enough. What a special place: started out as a gift, a place to call "home" after such emotionally draining days, and the first place we bring her home.

London has gotten so many precious treasures from friends. I will remember each one specifically and who it came from. Getting clothes has been so nice because my defense mechanism doesn't allow me to buy them when I see them. I have gotten her about 2 outfits but I buy 3-6 months because I KNOW she will be able to wear clothes then. Until she comes home from the hospital she wont be able to wear outside clothes. Bows and socks not included! She has gotten a few bows from her mama...that I cant resist! Etsy knows me by name.

Here is a picture of this past Friday as I was putting gifts away:

Material things are sweet but you know whats sweeter? Your thoughts, prayers and just being friends. I have been meaning to tell each of you:

1. thank you. I love each of you.
2. this world is GOOD, there are such good people.
3. I hope London will grow up to meet each of you. I want you to see her smile and hear her tell you "thank you"

Appointment

Today we had our appointment with Dr. Stanley. He is our favorite person to see so far in this whole process. He really sits with us, makes an effort to try to make the appointment fun, small talks, and sincerely wants the best for us. He suggests things to make this all easier.

Today London was a toot and it was really frustrating. Last time I explained how she is folded in half....well she seriously IS folded in half. Both of her feet and hands are RIGHT by her face. It would make sense that ALL my movement is on the right side. Lately if you look at my right side you might see an arm or leg come out...YES you can see it through my clothes!

I was a little bummed today because I was really really looking forward to seeing her face. I find so much comfort when I can really study her. I didn't go to medical school and don't really know how to study her heart when they do that, so seeing her face is something I can understand. I know Trey and and I know my features. Its fun to try to figure out who she will look like.

Below is a picture of London on the left (her left arm and bottom of her chin...among some placenta and body parts haha) & me on the right:

Of course with googling London's heart condition she is at a higher risk for chromosomal problems. Doesn't mean she has it, but congenital heart defects are shown in some of those. Stanley told us that he thinks theres only about a 2-3% chance she would have anything. There are no markers he has caught in three appointments and her anatomy looks perfect to him. He did a whole talk to us on not recommending an amniocentesis because they can be wrong, they can hurt the baby and he is noticing that in the new fields of genetic studies they don't show every abnormality anyway. There is always that possibility though. I try to tell myself that that's true for any pregnancy, you really don't know complete child until they are here in your arms...and sometimes much longer after.

We go to Dallas on March 20th for her next ECHO (reminder: that means heart sonogram) and meet with the maternal/fetal medicine doctors. We set up all information with them and we will get another ultrasound that day.




Girlfriend,
We know you like to yoga stretch....but it would be nice to see your face.

xox,
Trey and Chelsey