8 1/2 years later

March 2015

November 2021

I am not sure what brought me to my blog this morning. Maybe it is because we are coming up on Emma Kate's 13-year anniversary since her Glenn... it feels crazy just typing that. Maybe it is because she has been watching Good Luck Charlie again and it reminds me of her Fontan stay. Or maybe I just want to offer some encouragement or hope to those parents who may stumble across this blog after finding out a heart diagnosis for their child... do people still read blogs anymore? Either way, I just wanted to update Emma Kate's HLHS journey so it isn't stuck on being in the hospital after her Fontan 8 1/2 years ago.

Emma Kate came home in July of 2013. And then she went to Kindergarten and that seems like forever ago... and then she had a relatively normal elementary school experience. She did school plays, she went to the beach, she made friends, she went to Disney World way too many times. She fit her role as middle child perfectly. Always looking up to her big sister and wanting her attention. And mostly loving her little brother and loving his attention. She is now in the 8th grade. She is a cheerleader and she loves social studies. She loves the Gilmore Girls, the Office, and anything teenage romcom. 

She lives life.

And I don't write that lightly. I understand that some children in her situation aren't as fortunate. We are extremely grateful for the life that she is living. We are grateful that she is alive. And we are heartbroken knowing that isn't always the case with children with HLHS. Sometimes we have survivors guilt if that is the correct term in this situation. We don't feel guilty that she is alive but we are broken that some others don't have the same experience. 

HLHS used to consume most of our thoughts. The diagnosis was her life. I feel selfish saying that we don't think that way anymore. It is always in the back of our minds, but mostly way back. We prayed that she would live a normal life and praise God she does. We prayed for a fighter and I know God was laughing knowing who she would become. She is the strongest 5 ft tall 85 lbs human on the planet. She can bring all the joy and sometimes all the sass and stubbornness you could expect from someone who has been through all that she has. She loves to act and hopes to become an actress. She is compassionate and is an extremely thoughtful gift giver. We have a special handshake and a special butterfly kiss goodnight. She is funny and has an infectious laugh. If you didn't know about her HLHS, you wouldn't know. But she is ok talking about it. 

If you are reading this and are beginning your child's HLHS journey, know that we are praying for you. I don't know what the outcome will be or why. The heart community is an amazing group of parents put in a place they never wanted to be in, but who are in it together. If your story is different than ours, please know that there are people out there who have gone through what you are about to and can be a source of strength, knowledge, compassion, and comfort. 

If you are reading this and are one of the countless people who have prayed over Emma Kate and me and Bethany, thank you. It is still humbling having people come up that I do not know and ask me how Emma Kate is doing. I have said before and I will the rest of my life, we have received the blessings from your prayers and supports and I am eternally grateful for you.

And if you happen to be a doctor or nurse who has cared for Emma Kate or any children like her - you are forever my hero. We may put HLHS in the back of our minds, but you all are always the best in our eyes. The love that you have given to us and to thousands of other families is nothing short of miraculous. Thank you for performing miracles every day. You are a blessing. 

Day 2

Sorry for the delay in updating about Emma Kate.  It is much more difficult to take time to gather thoughts and type this time around.  Simply because Emma Kate is a child and not a baby.  Even though she has slept quite a lot since her surgery was complete it is difficult to leave her side.

Yesterday morning we were able to listen in during "family rounds".  This is new since the last time we were here in 2009.  Every morning in the ICU, parents have to leave for 3 or so hours so the Dr.'s can discuss each patient.  Egleston now gives the option for parents to be waiting nearby the ICU and come listen when they are rounding on your child.  Bethany and I enjoyed this because we got to hear multiple Dr.'s discuss Emma Kate's status plus the course of action for the day. 

We learned that Emma Kate was doing well.  Well enough, in fact, that she could leave the ICU and go to the Step Down Unit.  The Step Down Unit is a million times more comfortable for everyone, so this was a pleasant surprise.  The goal for the day was to let Emma Kate rest as much as possible and perhaps walk to the bathroom in her room.  They also wanted to see her drink and eat as much as she was willing and able to do. 

Overall, she had a good day.  She slept on and off for the majority of the afternoon and evening.  Her biggest discomfort, and they are a HUGE discomfort, are her chest tubes.  They hurt when she coughs, they hurt when she takes deep breaths, they pretty much hurt anytime she moves more than just a little.  Unfortunately, they have to stay in until they have stopped draining and they won't stop draining until she is moving around as much as possible. 

She accomplished one of her big goals by walking to the bathroom yesterday afternoon!  We have been trying to encourage her to drink as much and often as possible, but she has very little interest in doing so.  It is hard for her because her throat is still very sore from the breathing tube.  Her stomach started to hurt a little and she said she was ready to go to the bathroom.  It was uncomfortable, again because of the tubes, but she was a big girl and made it all the way and peed for the first time since having her catheter removed.  This is a big deal, as she needs to be taking in plenty of fluids and also letting out plenty of fluids.  She walked again late last night to the bathroom but this time couldn't pee.  As of 7:10am on Thursday morning, she has only peed the one time.  Please pray that she will continue to want to drink her gatorade and will start going to the bathroom regularly.  It is now 7:55am and she just peed!  So let's just pray she keeps that up!

Emma Kate spent a few minutes this morning snuggling with Bethany in the rocking chair and I think that was heaven for both parties.  She started to hurt a little, so she is currently laying in bed watching an episode of Good Luck Charlie.  The remote where the sound comes out is pressed firmly against her ear and she is smiling from time to time.  She hasn't had much of an appetite but we are hopeful that will change today.  We just ordered her pancakes, cheese grits, eggs and a blueberry muffin and she is excited.  We figure a bite of each will be a start.

We have to remind ourselves that she is still less than 48 hours removed from the Fontan.  She seems to have come so far, so fast, that we find ourselves making sure we aren't pushing her too hard.  My hope and prayer is that she rests and rests and drinks and eats to find the energy to start to feel comfortable walking.  I pray that her sats stay in the upper 80s-lower 90s while she rests.  I pray that she pees plenty and drains less and less so she can have her tubes removed.  I pray that she continues to heal the way that she has and feels more and more like Emma Katie every hour.

Again, I can't say enough how much your prayers are felt and appreciated.  We will try to update again later this afternoon.  Just know that we are spending good time loving on our Emma Kate and are looking forward to letting you all do the same!

Post Fontan

Emma Kate did wonderfully yesterday, much to the relief of her tired parents.  Bethany and I got little sleep Monday night preparing for the Fontan.  Fortunately Emma Kate slept through the night.  We arrived at Egleston yesterday morning around 5:45 and we were taken back around 6.  Emma Kate was happy and snuggling with her pillow, blanket and her new minion "Stuart".  After taking her versed, she was out in 5 minutes.  Anesthesiology came to take her around 7:30 and we went out to sit and wait.

Her surgery went faster than we expected, ending around 11:45.  We met with Dr. Alsoufi and he confirmed that there were no surprises and everything went as planned.  He let us know that these next several hours are critical as her body adjusts to her new physiology.  We were able to go back and see her for the first time around 1:15.  It is never easy to see our daughter with a breathing tube, chest tubes and wires surrounding her body, but what a relief it was to see her "post-fontan".

Post Fontan is something we have dreamed about for a lifetime.  Now, our little girl doesn't have a scheduled surgery on the horizon.  Not to say there won't be more, but nothing is currently in the works.  And she has pink toes and pink fingers and pink lips.  She has always been beautiful and now this is just pink icing on the cake. 

Yesterday afternoon, Emma Kate began waking up and becoming more alert.  When she would recognize that we were there, she would mouth that she wanted some water.  We were told that she would have to be extubated and then wait 4-6 hours for her belly to wake up to prevent EK from throwing up.  This was definitely the hardest part of yesterday afternoon/evening as we would only be able to tell her "soon".

She was extubated around 5:15 and, after many teary requests, received her first two medicine cups of water around 9:30.  This was satisfying enough for her to close her eyes and sleep for an hour.  When she woke back up, she looked at me and I thought she said "I want you to rub my back".  As I started to rub her back, she said "No, I want water from my bag".  We bought her a water bottle two days ago and that is all she can think about.  She had a few more sips throughout the night and has, unfortunately, spit some back up.  She did eat a few graham crackers and was able to hold those down.  Our prayer is that she can build up the strength to hold food and water down more and more throughout the day.

Overall, Emma Kate is doing great.  Other than spitting up some water, she did have a little issue with high blood pressure.  They have put her on some medicine that has brought it down a good bit.  Her chest tube drainage is looking good and this will be monitored for several days.

It is now 7:30am on Wednesday morning.  We are currently waiting for "family rounds" where we can go listen to the Dr.'s discuss Emma Kate and her plans.  We have heard that she might go to the step down unit tonight or tomorrow depending on how she is doing.  The thought is also to have her try to walk sometime today or tomorrow.  The more movement she can have, the better her chest can drain and prevent fluid buildup.  We will update later after hearing the latest. 

I know that Bethany and I often say thank you for your thoughts and prayers, but we are truly grateful and humbled by the love and support we have received.  It is amazing to get messages from all over of people praying for Emma Kate.  My phone died twice yesterday from the activity.  Please don't let that stop you, it is wonderful.  And please know that if we haven't responded, it isn't that we didn't get the message or that we didn't want to write back.  We hope to be able to respond to each one of you when we have the opportunity.  Until then, thank you with all that we are. 

Fontan - 7/9 7:30 am

Today was a little harder than I expected.  I have been trying to mentally prepare myself for this for a few weeks, but I guess this is something that doesn't get easier with time.  It seems to be quite the opposite. 

I think what I am struggling with is knowing what will happen tomorrow and I can't take that hurt away from my daughter.  Emma Kate comes to me to comfort her when she has a bad dream at night.  She comes to me to hold her when she is tired and wants to snuggle on the couch.  She comes to me to carry her when she is too tired to walk up the stairs.  And now, at the time when she is the weakest, I have to give her to someone else and trust them with her life.  I feel completely helpless. 

Let me be clear. I have full confidence that Emma Kate will get through this surgery and thrive as she has after her first two surgeries.  I believe that God has a distinct and perfect purpose for Emma Kate's life and has His hand wrapped firmly around her heart.  I believe that these miracle workers at Egleston are prepared and able to and will indeed do an amazing job tomorrow morning.  But I also know that Emma Kate will go through 5 hours of open heart surgery.  She will spend a few days in the intensive care unit with wires and tubes that will, at best be uncomfortable for her and, at worst, will cause her pain.  She will have her blood drawn numerous times and be woken up throughout the day and night by beeps and nurses and mommy and daddy checking on her.  That is why today has been hard.  I know what is ahead and can't protect her from it.  

All that said, Emma Kate did great today.  She got a little bored waiting around as different Dr.'s and nurses came by to explain the next few days and have us fill out paperwork.  She also didn't care too much for the lab work but bounced back quickly when all was done.  She asked Bethany if she could now walk up the stairs without getting tired.  I am so ready for that to be the case.  This evening, she was overtired and a little anxious.  She doesn't fully grasp what all is going on but knows something is going to happen tomorrow.  She was a little restless but finally snuggled with me and Bethany and is now passed out.  I pray she has sweet, restful dreams.

She will be the first case tomorrow, meaning we will be at the hospital at 6am.  She will get versed (princess juice as EK calls it) soon after we arrive to help make her sleepy.  They will take her back around 730 and hope to begin the procedure around 8.  If all goes well, she should be back in the ICU around 1pm and we will be able to see her around 2.

We have received numerous calls, texts, emails and facebook messages of encouragement and prayers and we are tremendously thankful for each one.  I feel selfish always asking for the prayers of others, some who have never met us, but still I plead for them.  I believe that Emma Kate is a result of the power of prayer and will always hold firm in that belief.  So if you would, please pray tomorrow morning for our Emma Kate.  Ask that God walk with our new surgeon, Dr. Alsoufi, and allow his hand to do the work he was trained for.  Ask that His presence fill the operating room so that peace and wisdom would abound.  I would also humbly ask that you pray for a peace that passes all understanding to cover me and Bethany as we sit and wait and wonder and pray.  Finally, pray fervently that Emma Kate will have the strength to endure this third surgery and that His comfort and healing would consume her these next few weeks.

We will update as we can tomorrow.  Thank you many many times over for lifting up our sweet girl.  She is our heart and our joy.  

July 9th

Four years and four months ago I last blogged about Emma Kate. I blink, and she truly is growing before my eyes. As I read through her journey this evening, I found myself laughing and crying at the situations and circumstances that seem so far away from the present. Our days are no longer filled with thoughts of ng tubes or chylothorax, but instead Lalaloopsy dolls and One Direction songs. Baby Einstein movies have turned into hours of Good Luck Charlie episodes and Wreck it Ralph. No food for 10 days is just an awful distant memory. Now, hot dogs and spaghetti followed by Nutella and Cheddar Bunnies fill her belly. She loves to sip coke but will request water with all her meals.

Since March of 2009, Emma Kate has learned to crawl, walk, run, dance and flip wherever she has a few feet of space. She has traveled to Hawaii, New York City and numerous places in between. She is shy to strangers and a comedian to friends and family. She idolizes her big sister and will do anything and everything to get her attention. She has become a big sister, a role that was unexpected but one that fills her heart more and more everyday. She is a mama's girl and a daddy's girl all at the same time. She loves to snuggle and knows what to say to put a smile on my face. She doesn't pronounce her R's and our southern girl speaks with a New England accent. She weighs 30lbs soaking wet, and yet, is full of spunk. She loves Taylor Swift, One Direction, "Gangnam Style" and "Call Me Maybe". For all intents and purposes, she is a typical almost 5-year old little girl.

Typical, that is, except for her heart. I say that our days are no longer consumed with thoughts of Hypoplastic Left Heart Syndrome, but that is not entirely true. At the back of our minds has been the lingering thought of the Fontan, the third of the three-stage open heart surgery plan that we have known about for 5 years now. 5 years ago, we thought she would've had the Fontan at around 2 or 3 years old. Fortunately, because she has been doing so well, her cardiologist and surgeon have wanted to wait as long as possible.

Now the wait is over. Emma Kate will have her Fontan, next Tuesday, July 9th, again at Egleston in Atlanta. The only difference will be her surgeon. Our hero and Emma Kate's surgeon for her first two stages, Dr. Kirshbom, is now the Chief of Pediatric Cardiac Surgery at Yale and Connecticut Children's hospital. While we are disappointed that Dr. Kirshbom will not be doing Emma Kate's surgery, Egleston is a place that we love and trust with all we are for EK's care. So we will head to Atlanta Sunday night for a full day of pre-op on Monday. And then on to Tuesday.

We understand that we are blessed beyond measure for how well she is doing and has done, but the weight of this surgery is unbelievably overwhelming. Again, we have known about this for over 5 years and now it is here. For the third time, my little girl will go on bypass and have open heart surgery. Please pray for our strength as we prepare Emma Kate for this life-saving event. She is the strongest child I know but I still get weak thinking about the surgery. Please pray for her surgeon and surgical team, that they will do an amazing job working on her heart. Please pray for the nurses that will love her as she heals over the next few weeks. And most importantly, please pray for our Emma Kate. We call her Emma Kate, Katie Bug and Emily Katherine. Pray that our little girl gets through this with all that she is and that this dreaded event will, in 5 years, just be an awful distant memory.

Grateful, Yet Humble

February is supposed to be the shortest month of the year but it seemed to last forever. But thankfully, it is long gone. February went out with awful thunderstorms and March, quite fittingly, came in with beautiful snow.

Snow that was cold and yet refreshing. Snow that only lasted a few hours yet left its mark and reminder that all things are made new and unique. And like snow, all things come and go. And all things are brief.

As I type this, two families of children with heart defects are going through completely different emotions. One family, my own, is rejoicing. Thankful that our month long stay after the Glenn is over. Emma Kate will be discharged in a few hours and will hopefully head home for several months before her Fontan.

Emma Kate will come home and learn how to sit up, crawl, walk and talk before heading back for hopefully her final surgery. She will finally learn what it is to be a normal child. No more keeping her in the house in fear of her shunt clotting. No more keeping her away from other people. She can finally meet our family. And I am so very grateful.

The other family, the Gledhill's, are experiencing every parent's worst nightmare. A nightmare that Bethany and I have had more frequently since having Emma Kate. They are losing their Gracie. And it is breaking my heart.

It has been so hard to watch Emma Kate go through what she has yet she is doing amazing. Gracie hasn't been as fortunate. I have never met this family and I probably never will. But I hurt for them. These heart children around the country become an extension of our family. And when they suffer, we suffer. I hate this defect with all that I am. I pray daily for a cure.

So as I sit here today, I am grateful and weak all in one. I am so excited that my family will all be home today. But am crushed that another family will never be able to say that again.

May I never take things for granted.

And may I never complain again.

Dear Future Son

Dear Future Son,

It is a Sunday morning in February. February 22nd to be exact. I am sitting here with your future wife, Emma Kate. And as I hold her, my thoughts keep going to you. You have been on my mind a lot this week which is strange because I am not sure if you are even alive yet.

You see, my Emma Kate is fighting hard to meet you one day. She has not eaten today, and has not for the last week in order to correct a complication from surgery. Her second open heart surgery in her short 5 months of life. And this road isn’t finished yet. We will head to Atlanta tomorrow where they will perform another surgery to hopefully correct this complication.

It has been a rough week on me and Bethany. Watching our sweet angel cry because she is hungry has, at times, been too hard to handle. But for some reason, thinking of you makes me smile. I smile because she won’t remember this. She fights hard today, so that one day she will know nothing but happiness. Sure, times will be challenging, but nothing will compare to this. And she can overcome anything.

I smile because she has inspired me more in 6 months than I will be able to inspire her in a lifetime. And you better be amazing, because I can guarantee that she is. Know that I will not make it easy on you. Not because I don’t like you but because she is worth it. And I will have to make sure that you are worth it. She is not fighting this hard now for nothing later.

Every day, until I give you her hand, I promise to kiss her good morning and good night, with hopes that you will do the same. I promise to dance with her in the living room to cheesy Disney songs, with hopes that you will do the same. I promise to read her fairy tales of knights in shining armor, in hopes that you will be the same. I promise to listen to her and get to know her heart, with the hope that you will do the same. And I promise to love her unconditionally, forever, with the hopes that you will do the same.

One day I will walk her down the aisle and hand her to you. But know that my love for her will never stop growing. My prayer is that you will love her even more than I do, which in my mind right now is impossible. But I pray that you will strive every day to reach that. Her heart is fragile and I pray that you will make it whole. I pray for you daily and promise to do so for the rest of my life. I pray that God is molding your heart right now to beat perfectly with hers.

But most of all, I pray that God draws your heart to His. I pray that He teaches you how to be a man after His heart. I pray that He teaches you to love others more than yourself. That you will know how to love Emma Kate’s heart through how you have loved your mother’s heart. That you will respect her how you have respected your father.

And I pray that you are a better man than I am.

Love,
Brooks