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

Strength vs. Rest

Lately I have heard from so many people "You have so much strength". I appreciate those words so much but lately I have learned what "strength" is:

Although I seem so positive, I am not out of touch with reality.

I know how serious London's condition is and I almost know too much. I know that my daughter will never have a normal heart, I know that she has a life threatening condition. She will always be a single ventricle patient. I know her days are more fragile than the normal babies. I know her risks in each surgery. I know the risks in her everyday life. I know the doctor's appointments that will always follow her. I know what it feels like to be the woman with the sick baby. I know how it feels to have people scared to talk about the baby because they don't know what to say. I know what it feels like to not know my life plan, AT ALL. I know what it feels like to simply have no brain power left, to have complete mental exhaustion.

Sometimes it all seems too much. Last week my life felt so "heavy". I felt like everyday seemed to be filled with worry, and not enough with life's simple pleasures. One day last week I was alone for a little while and started to cry...slowly that cry turned into a full blown ugly cry. During that cry I said out loud to God "make it stop...at least for a little while".
That was my whole prayer that day, I was out of words and didn't know what to pray after praying for multiple times a day ongoing for months. I was tired of it all.

The very next day I felt such relief. A giant weight was lifted off my shoulders and life seemed light hearted again. There was so much goofiness in our house, time with friends felt normal, it felt good to smile in pictures and REALLY be smiling from within. I was given "rest".

The funny part about it all is nothing about my situation went away...London is still up for quite the battle and we have the journey ahead of us. The part that changed was I asked for "rest".

This cycle will come and go, shes not even here yet. But I consider this a training run...ask for it.

Strength comes when you ask for it. I still cry, I still worry, I still have so much anxiety every single doctors appointment...and that won't go away.

God didn't ask for perfect people, sometimes life gets too much and heavy. The best we can do is admit it and regroup.

"Come to me all you who are weary or burdened, I will give you rest..."

Pineapples, Applesauce and Bodybags?

There have been MANY funny parts of being pregnant with London. Being pregnant cracks me up because my body went through some whack-a-do things. I will list them to make you laugh on your Wednesday afternoon:

1. When I first found out I was pregnant I went to bed around 6 o clock....every night. Poor husband.
2. I had dreams of being in rooms with body bags, pulling them down individually and putting them in the backyard, ONE I left for the bathtub. Another dream, I was in a field of giant grasshoppers.... Sick out and who am I?
3. I craved SALT and BBQ the first trimester.
4. Me and the potty were dates for my 8 times a day up chucking. Made for interesting days for 6 weeks.
5. The nose bleeds were OUT OF CONTROL, I would bleed in the car, talking to somebody mid conversation, doing anything pretty much..I was a bleeder. I feel sorry for anyone driving next to me on the freeway, nose bleeds everyday...scheduled at 5.
6. Second trimester came around and I got obsessed with pineapples and orange juice. I drank an entire gallon of OJ around Christmas time in .5 seconds flat. Pass the pineapple pizza please.
7. I craved anything with spinach and mushrooms.
8. Sweets were nasty first trimester, awesome the second.
9. I am CLUMSY these days. I bump into everything, drop close to everything.
10. I wouldn't trade one second of it! Well...maybe the creepy dreams.

Here's to the graceful, weird dreaming, potty hugging, and salt gorging pregnant girls! I feel ya.

All of me

This past week was one of the biggest weeks for me. I feel like I have aged 10 years just in one week. I went through being overwhelmed, stress, fear, sadness, anger, tenseness, controlling, etc.....about every emotion a person can have as a defense mechanism.

I feel like my defense wall went way up this week. I wanted to guard myself from the emotions I was feeling. I have always turned "tough" when I don't think I can handle how I feel. I shut down and introvert myself. Trey can always sense when I am getting too tough.

There are a few things that I have learned that really changed my heart the past few days.

The Christian band Sanctus Real has a band member that had a son with Hypo plastic LEFT Heart Syndrome (London has RIGHT). Matt Hammitt wrote a few songs during his and his wife's battle with the heart journey.

He talked about the defense mechanism that they went through with all the uncertainty for their sons birth. He had all the feelings that I had and decided to turn it around. Its a choice how we live each day. You choose fear, sadness, irritation in your life. This song is about his decision to live life each day with no fear of whats to come. His child deserves all of him, no matter what COULD happen.


Afraid to love something that could break
Could I move on if you were torn away?
I'm so close to what I can't control, I can't give you half my heart and pray he makes you whole.
You're going to have all of me, You're going to have all of me
You're worth every falling tear, You're worth facing any fear
You're going to know all my love, even if it's not enough
Enough to mend our broken hearts, but giving you all of me is where I'll start.

I won't let sadness steal you from my arms, I won't let pain keep you from my heart.
I'll trade the fear of all that I could lose, for every moment I'll share with you.
You're going to have all of me, You're going to have all of me
You're worth every falling tear, You're worth facing any fear
You're going to know all my love, even if it's not enough
Enough to mend our broken hearts, but giving you all of me is where I'll start.

Heaven brought you to this moment, its too wonderful to speak
You're worth all of me, You're worth all of me
So let me recklessly love you even if I bleed, You're worth all of me.

You're going to have all of me, You're going to have all of me
You're worth every falling tear, You're worth facing any fear
You're going to know all my love, even if it's not enough
Enough to mend our broken hearts, but giving you all of me is where I'll start.

This song has been on repeat to me the past few days. I can chose to live in fear, sadness, irritation, and build walls or I can be living each day one second, minute, hour at a time. I will deal with things as they come, London deserves "all of me".

Each of you readers out there: go to bed tonight knowing you CHOOSE your day. You can choose happiness. None of us know our tomorrow, don't let fear guard you from life.

Diagnosis and where we go from here

Yesterday we were in Dallas for our first cardiology appointment for London. We showed up at Children's Dallas and were taken to the third floor for her first ECHO first. For those of you that don't know what an ECHO is, it is a heart sonogram. I laid on the table for one hour and 45 mins as three people whispered and looked at each and every inch of her heart. It was so comforting to have Trey and his parents in there with me. After that long screening we were told to go next door for a "consultation" with the doctor. We sat at a small table and all pulled out notebooks/notes to take as she spoke. She showed us a picture and explanation of what normal anatomy of a heart looks like...and then showed us what London has.

The diagnosis is:
1) Tricuspid artresia- London's tricuspid artery never formed correctly. Therefore, her right ventricle didn't grow with her. She basically put it in easy terms by saying "no flow, no grow"
2) Hypo plastic Right Ventricle- Hypo plastic right ventricle means a smaller barely functioning right ventricle.
3) Smaller aortic valve - skinnier than normal aortic arches.
4) Concern for aortic interrupted arch - her aortic arch might not be connected to the bottom of her heart.
5) London has a larger ventricular sepal opening (which is actually good for all of her other defects)

Our surgeon will be Dr. Joseph Forbess. I have heard so many WONDERFUL things about Dr. Forbess. Yesterday was no exception on the wonderful things about him. He actually is known for his work on hypo plastic hearts and aortic arch reconstruction. His statistics are MUCH better than the national average (which is 85%).

After the diagnosis we went on a tour of the cardiac ICU to see where London will be taken after I deliver her. We were told yesterday that usually they are pretty stable after birth and we will be able to hold her/take some pictures. She will be taken there in the first day of life and will be watched very closely. Her condition if not treated, she would turn very blue fast. Taking her to the NICU allows them to monitor oxygen levels, blood flow and her stability.

She will have her first open heart surgery in the first week of life. This surgery is called the Norwood (which I mentioned in my previous blogs). This surgery will be a giant change for her heart. They will block off parts of her heart and do some "re plumbing". They will create a shunt for her to get better blood flow to her lungs. This surgery is also where Dr. Forbess will reconstruct and widen her aortic arch. After this surgery is her most critical time period, her heart has to learn how to function this way. She has to learn how to eat, gain weight, and the pressure in her lungs must go down. Of course we heard statistics, things that "could" happen, things shes at higher risk for, etc. She will be in the ICU for around 3-4 weeks if she does well. Two people can sleep in the room so I will most likely sleep there most nights. She will then be moved to the 8th floor where they will teach Trey and I how to take care of her. We will learn how to check her oxygen levels, weigh her (everyday), care for her scar... The 8th floor is the step closer to going home.

Home, well that's another thing we talked about yesterday...I will most likely have to live in Dallas until her next surgery, the Glenn, (4-6 months of age). They like these high risk babies to be around 20-30 mins close to Childrens. Most of the infant deaths in these cases are because the families aren't close enough to the hospital if something were to go wrong. We are still trying to figure out our plan for that time period. Most likely we will find an apartment for me and Trey will just come up on weekends. I know this is such a short period of time and is whats best for our daughter...but I'm going to miss being with my husband.

Yesterday was more than draining. Probably one of the most draining days of my life. Its such a weird feeling to be pregnant with a baby that will have such struggle. Walking through that hospital was also a giant reality check, this is my new life.

I guess one positive of yesterday is we know what specific things to pray for and it could have been worse.

Specific things to pray for:
1) Londons aortic arch/aorta to grow with her.
2) Blood flow in the aorta and aortic arch to not have "back flow" in her brain. For her brain to not experience any delays or physical delays.
3) Her lungs to grow strong.
4) That I don't go into labor early, she is full term and is big as we can get her.


This is one of the least fun blog posts...but its reality. I'm stressed, so incredibly tired and wish more than anything in this world I could give her a better heart. I will get better but yesterday was hard. It's hard to feel like God can't hear me.
Driving home around 11, Trey just said "I love you. I wouldn't change anything about you."
I guess it's Jesus in disguise, telling me "I've sent people to help you, I love you."

Thank you for the prayers,  we all need them.

ultrasound appointment and girl time

Today was our first ultrasound appointment since our not so favorite day...

We went in and I was a giant chatty Kathy as we waited in the waiting room. If you know me at all, you know that when I am nervous I just talk and talk and talk. Trey was very sweet and was my talking partner today. They finally let us in and it was another good hour of looking at London and her heart. I have become much more observant in ultrasounds after the last one and watched every second. Every word they typed and sound they listened to, I watched. The lady typed the words "cerebellum" "aorta" "pulm vein" "kidneys" etc. A sigh of relief would come each time she would type those words because I would know that means "SHE HAS THAT!" It sounds so silly but now that I am in the world of birth defects, I am worried about ALL the birth defects.
Dr. Stanley came in and was so sweet... Remembered us and every lick of conversation we have had or had that day three weeks ago. He looked at her and said the same thing he said last time but also the words "she looks perfect everywhere else. Nothing worse by any means."
That was such a sigh of relief. Although her heart condition is very serious, fatal if not treated...she is fixable. Her condition is not "hopeless", in fact, she has about a 85% chance of doing well.
If we can get London through her three open heart surgeries (gulp!) we can make it through.

Don't get me wrong - today was hard. I'm much stronger than three weeks ago and can accept three open heart surgeries easier because it is necessary for her life...but I don't want it. If I could give anything, pay anything, give anything out of my body...I would. But I cant, I can be her mother and pray for her. As much as I would like for it to go away and as much as I wanted it to, it didn't. But her story isn't over yet!

London's funny personality traits:
She has reallyy long skinny legs
She has pouty lips (just like her mama!)
A pointy nose just like the Horkey side
Long skinny feet
She loves her feet and hands right by her face, that's right, shes basically in stretching upside down at all times.
She moves ALOT
Trey calls her Londybear, which is hilarious. Every time I see bears I think of the princess. Bears and hearts are in her future.


After work today I had a hair appointment, which was just a great end to today. I'm stressed, relieved, sad, happy and overwhelmed all at the same time. I am so grateful for prayers, overwhelmed that this is our future, but hopeful and grateful for all the other bridges we missed.

Information overload

The past few days us Horkeys have been a tad under the weather. A virus has blown through our little house and has slowed us down. Treys passed much quicker than mine...and he had it first.

Being sick has made me learn a few things. I don't do well at home with a iPad being too close to research. I have looked at information, blogs, doctors, hospitals, questions I should ask, etc. until it has made me (even more) sick. Today I have banned myself from all of those things. I don't necessarily think it makes me a bad mother to not want to know. I don't want to know all the bad stories, bad treatments, bad recoveries and bad things that "could" happen. I now chose to accept London's case differently. Yes, she might have the same diagnosis as those kids, but her recovery and healing could be different. Her statistics could be different. No case is ever the same.

Today was definitely a low day when I realized I had filled my mind with entirely too much "stress". I brought all this stress upon myself. I knew it would creep up after a few weeks. There are some things that people have said lately that sting:

"I just cant imagine" ---well, me either.

"I don't know how you are going to do it" ---well, me either

"I didn't want to tell you, I know you have so much going on" --- I don't like to feel "different"

I am the same ol Chelsey, just learning how to live life completely differently than I have. I don't sweat the small stuff...because I can't. I still need the contacts from friends, funny stories, light hearted events and joys I always have...actually, even more now than ever.


I know that being a parent you will always worry about your child. I already feel an immense worry for my little girl. But you know what? there is NOTHING I can do about it but give it to God. God knows my story a few months down this road and no amount of information, studies, blogs, etc. will make myself feel any better or my situation any different. We have been put in such good hands in Oklahoma City along with Dallas and I trust that the Lord is going to work along with them to get us where we need to be. This Thursday we look at London again and I already feel excited to see her. The last time I saw her I felt sad for her. I am ready to look at her and thank her for moving so much lately, to almost tell me..."hey mom, chill out. I'm just peachy in here! O and also, stop looking at the internet."

I know most of your aren't in my situation, but we can all learn a little on you cannot CONTROL it or COMPARE your life to anyone elses.

We all have a separate story and God wants us to just show up in life and "do not be afraid".