Bethany and I have been taking turns staying the night in EK's room so that one of us is fully rested at the RMH while the other takes care of Emma Kate during the night. It is also nice for one of us to put Anna Brooke to bed and be there when she wakes up. It is amazing how much we have missed her through all of this. Bethany stayed Monday night, I stayed Tuesday and then again Wednesday (so I could be rested for the pretend drive home Thursday!), Bethany last night and I will stay tonight.
Though we are growing tired of it by the minute, the step-down unit is nice (your typical hospital room) and the staff has been great. Bethany eats her meals free (all breast feeding moms do, which I think is awesome) and mine are only $5. The food is decent but I don't think either of us will eat chicken fingers again for quite a while. And I can't stress enough how much both of us miss our bed. I think massages at Ross Bridge are in our future.
Anna Brooke has been doing wonderful. She spent several days in Warner Robins with Kiki and Lito and seemed to have a great time. She has also enjoyed spending so much time with Nana. Today on our date, Anna Brooke over heard someone say Starbucks and she said, "ooh, let's go to starbucks with Nana. We can get another blueberry muffin". I think she is enjoying being spoiled by her grandparents. Bethany and I are so blessed to have such wonderful parents to help us out with everything.
As for our date, we spent the morning at the Georgia Aquarium. It is very nice but I am glad she was free! I think she enjoyed it but will enjoy it more when she is older. Her favorite things were the waterfall "just like on little Einstein's!", "mt. McKinley" (a pile of rocks with snow for the arctic fish) "just like on little Einstein's!" and the 3-D fish movie because of her "secret agent super spy glasses". Oh, and the seals were cool, too. Then we headed to the Varsity for hot dogs and a pc (icy chocolate milk). On our way home she said "I had a wonderful time with the fish and you daddy". I love that kid.
Emma Kate is doing great will almost everything. She had her oxygen tube and head iv removed on Tuesday, and her pacing wires removed today. Her sats (blood pressure, oxygen level, heart rate) are looking awesome. Sometimes her oxygen levels are a little too high but this is better than being too low. She loves to be held by mommy and daddy and stays awake for all visitors. I think she loves showing off her big blue eyes! She hates having her diaper changed and getting x-rays done. Other than that, she spends her days sleeping or talking (grunting) to us.
The physical therapist says she has great muscle tone and feels she will meet all goals on time. The speech therapist has given her two bottles and has been impressed with her ability to swallow. Aspiration is a big fear for heart babies so this is great that EK can drink. Today she took her car seat test. This test is usually done for an hour to an hour and a half to simulate how the baby will do in the car on the ride home. Because our trip is 2 1/2 hours, Emma Kate sat there and slept for 2 1/2 hours. She is ready to ride.
The reason we are still here... Emma Kate is fed 55ml of milk through a ng tube (tube through her nose directly to her stomach) for an hour and a half every three hours. If her stomach can tolerate this, she will move to 55ml an hour and so on until she is taking everything from a bottle. Typically, when children get to 55ml and hour they can go home because the doctors feel confident they are handling the food. Unfortunately, she is having a difficult time handling the feed. Reflux is very common in heart kids but she spits up a lot. They want to keep monitoring her until she can hold food down a little better.
Bethany and I are so proud of how well Emma Kate is doing. Now we just pray that she can start to handle this food. Please pray that she will start to tolerate it better. She has done so well with everything else and I know that she will get the hang of this soon. Thank you for your prayers and praises. We can't wait for you all to meet our sweet little girl.
On one hand I am ready to be there. Ready to sleep in my own bed. Ready to wake up to Anna Brooke asking for "nemo" juice. Ready to take a shower in my own shower. I am ready to lay in our bed with our two little girls and see Anna Brooke learn to be a big sister. And I am ready to see Emma Kate grow stronger and learn to smile and laugh.
On the other hand, I am not quite ready to leave. This surgery has been so straining on us mentally for quite a while. And yet it has been such an incredible experience to encounter. Please don't get me wrong, I have hated seeing my daughter endure what no child should and my wife what no parent should. But somehow, now, I feel so refreshed. It has been terrifying, humbling and breathtaking. Now watching her sleep and breath on her own I feel I can breath. Through this chaos has come complete order. I believe that these events only happen a few times in life. And the outcome of this event is my amazing Emma Kate.
This has been the greatest journey I have ever been apart of and I am just a bystander. I have laughed, cried, sang, cursed and have gained more insight into life than I could have ever imagined. I have witnessed the birth of my beautiful daughter, witnessed the indescribable mystery of God's creation, witnessed the awesome ability of man's medical might and witnessed the wonderful power of prayer from family, friends and complete strangers.
I am ready to be home. But I am not ready to forget this. I fear when we get home life will become fast paced again. I fear going to work and toiling over meaningless things. I fear getting caught up in the mundane, getting caught up in the things that don't matter. In here, life seems so simple: Love my wife, my girls, my family and everyone else. Love them all with everything that I am. Be sincere and live each moment with the same passion as my Anna Brooke. And take each breath with the gentleness of my Emma Kate.
Now she lays here with only an internal heart line and IV's with medicine. No more breathing machine, chest tube or catheter. No more numbers for me to stare at and worry when one jumps or drops. She is close to just relying on me and Bethany. This is a little scary but we can't wait to have her as our own. She currently has a feeding tube through her nose and is getting her first bit of food as I write this. Hopefully her body will take this well and she can be bottle fed soon. We are just happy that after 8 days, she is actually getting food.
I am still cautious about her future, but she has been amazing. To say that life has been challenging the last few months would be an understatement. But the way she fights shows us nothing is impossible. I look at the scar on Emma Kate's chest that will forever be a part of her. It is a scar that some day she might be insecure about. I pray that she isn't. I pray that she is proud of it. Proud of a sign that forever tells her that she is stronger than most. Stronger than her daddy will ever be. Bethany and I keep calling her our little fighter. But that is too masculine a word for something as precious as she. There needs to be a new word for something so fragile yet so strong. Someone so new and innocent yet already a conqueror of death. The only words I can think of are Emma Kate. Her name speaks it perfectly to me.
Our other worry in all of this was how a 2 1/2 year old, strong-willed child would handle the separation from her best friend. Also, how her mommy would handle being away from her little princess. I am very proud to say that both are doing well! Anna Brooke went to Kiki and Lito's house yesterday and didn't cry for us once! I think she is truly enjoying being spoiled; first by nana and papa and now by kiki and lito. Bethany had a hard time waking up this morning without AB but knows this is a big important step for both of them. I am very blessed and proud of all of my girls!
I will try to update again soon, perhaps even from the step-down unit. Writing has been very therapeutic for me. Thank you all for sharing this journey with us and for your prayers and support. We all need each other. We still have a long road ahead but each step is making the next a little easier.
As we sit and talk with Emma Kate, we ask the nurses thousands of questions. I'm sure we ask the same things over and over but the nurses continue to answer with a smile. (Please thank God for Kim, Rachel, Brenda, Kristina, Allison, Heretta, Rachel again, Lisa, Heretta again, Lisa again and Lauren). They explain each tube, drain, button and medicine over and over. I try to pretend like I know what is going on but actually I'm just glad EK is in their hands.
Emma Kate is currently still swollen in her face, arms and legs. This is a side effect of all the liquid being put into her body with not much being let out. The body has to work hard after surgery to pee and it is even harder for someone who is 5 days old. They told me yesterday they would like to see her between 15-20 ml per hour but would settle for 10. She hit 12 the first hour we were there and never looked back. She got as high as 31ml! I know it is weird to be excited about pee but it feels good knowing one of her goals and seeing her reach it.
As of Sunday morning, Emma Kate has not had any major setbacks and for this we are grateful. We know there are many days still to come but these first few have gone well. We have taken many pics of her with her wires and I will post them soon. They are hard to look at but I have taken them for several reasons. First, I always want to remember what my little hero went through. Problems and struggles will never seem as difficult compared to this. Second, I want Emma Kate to see these when she is older. I want her to know how hard she fought and how truly precious she is. I also want to show every boy who knocks on my door in the future just how much my Emma Kate means to me. I think these pics will be stronger than a gun.
During our stay here, we have built relationships with other heart parents who understand exactly what we are going through. It has been a great emotional release to deeply exhale and look over and see another dad nod with sympathy. To be able to walk over and say "You guys should go get some rest... There is a huge parking garage to go scream in... (and my personal favorite) I just don't understand the heart at all!!" With these people, we have quickly formed a bond. We rejoice in their victories and pray hard in the struggles. We look forward to the day when we aren't seeing them in the CICU and instead in the Step-down unit. That is still a little while away.
I don't know why God chose Emma Kate to endure this. But I do know that my faith in Him grows by the minute. And my faith in man is growing as well. If only we could all look past our differences and reach out and give each other a hug. What a wonderful world it would be.
Emma Kate fought hard today. They took her away this morning and put her on heart and lung bypass around 9 am. At 1 pm we were called and told that she came off of bypass without any problems. Though our hearts haven't started back quite yet, this was a big step. Thank you God for hearing me.
Dr. Kirshbom came and said everything went as smoothly as he could have hoped. He said she didn't have much swelling so he was able to close her chest in the OR. He said the next 12-24 hours are the most critical and that she will be monitored very closely. (as of 11pm when I left her, everything was looking good. They have upped a little of her medicine to help with profusion but this is relatively normal. Her nurse said her chest tube is showing that she is having very little bleeding which is great. She has a little "extra" noise in her chest which is caused from fluids that they are draining. I have my pager and cell phone by my side just in case anything is to change).
When Dr. Kirshbom left, Bethany and I cried and cried. What a blessing that her surgery went so well. I know this is still an uphill climb but I am thankful a big piece of the trip is underway. Emma Kate is our little fighter and I could not love her more.
I often told Bethany that Emma Kate would be born on 8/22/08 because 8 is Bethany's favorite number and 2 is mine. She was not born on the 22nd, but on the 22nd she was given a chance at life. I want to cry, I want to scream, I want to dance, I want to rejoice with all that I am.
Today I witnessed someone walk in, whom I have never met, and casually introduce himself to my family. He explained what he was going to do to my newborn daughter's heart like I would explain how to turn on the computer. He talked about a procedure that is the difference between life and death for Emma Kate with such a calm confidence that I have chills thinking about it now. I wake up in the morning wanting to make an impact in this world and end up playing XBOX. He wakes up in the morning and repairs the hearts of children of people he doesn't even know. I am sure he makes a good living but whatever it is will never be enough. He has given my little girl a shot at life. Thank you is an insult to say. It is way beyond that. When he left after her surgery, Bethany said she just wanted to kiss him. I think I could too.
I sit in a room full of tiny babies with tiny injured hearts and look around at a room full of nurses who are smarter than I could ever dream of being. They spend 12 hour shifts looking at monitors and working on computers that detail Emma Kate's every heart beat. They don't sit around and play solitaire or gossip or complain. They pump and prod and poke and pray and sing and hold and comfort children in order to heal with the hopes the child never has to come back.
This is a sanctuary unlike any I have ever stepped foot. I'm sure outside these walls they are normal people with pain, with problems of their own. But here, within the security of these doors, these people, these doctors, these nurses, these blessings... in here to me and countless others... these people are heroes. And I am grateful in a way that awakens my soul.
Brooks and Bethany
I called Bethany, who with her mom and Anna Brooke were in the car on the way from Birmingham, and told her about the plan. She began to cry a little (tears of joy) as this is what we were hoping for. I told her that Dr. Kirshbom was in surgery and would speak with us when Bethany arrived. I spent about two hours with EK and went to eat lunch.
Bethany arrived in Atlanta around 1:45 and we went and sat with Emma Kate. She is still doing very well. She has the chubbiest little cheeks for a child that was only 5 lbs 13oz! She is sleeping all the time, as newborns do, and all of her tests are coming back well.
Dr. Kirsbom came to meet with us around 2:15 and discussed the plans. Emma Kate will have her Norwood tomorrow morning to mid-day. She is the second case of the day meaning Dr. K has another surgery before hers. The estimated time for surgery is around noon. He said that there is a chance that his first case won't show up tomorrow and if this happens EK will go at 7:15am. This means that Bethany and I will get to the hospital around 6:30am so we can be with her before she goes if she does go first.
Dr. K discussed the procedure in depth and the plans before and after. (Here is a link that explains the Norwood. For you heart parents out there, Dr. K will be doing the Sano instead of the BT shunt). The surgery should last roughly 6 hours and we will be called by a nurse every hour to explain where they are and how EK is doing. After her surgery, she will remain in the CICU until she is stable enough to go to the step-down unit. She won't be able to "step-down" until the majority of her wires and tubes are removed.
Dr. K explained that Emma Kate is a typical HLHS baby and feels her surgery has a 85-90% success rate. This stat falls in-line with Norwood patients. He did say that her aorta is very small --2-2.5 mm (not cm as I posted before) but this is not uncommon for HLHS babies. We will meet with him again tomorrow when surgery is complete.
So where does this leave us? Scared, excited, nervous, exhausted, etc. You name it, we are going through it. We are very glad that step 1 will begin tomorrow. This has been a surgery that has been hanging over our heads for months and now it is finally here. We are more scared than we have ever been in our lives. We are planning to get as much rest as possible tonight so that we can be ready for what is about to come.
Emma Kate is real now. I can touch her, smell her, kiss her and I am going to allow someone to take her away and stop her heart. It is the weirdest feeling I have ever known. I know that they are doing it to save her life but it takes my breath away. Please dear God let her surgery be a success. I can't say that loud enough and it still feels like a whisper. Please allow the doctors and nurses do their jobs with the knowledge and talents and abilities that you gave them. And please let my sweet little girl with her chubby cheeks and her long skinny fingers and toes and her head full of hair and her sweet little tongue and her soft precious skin get through all of this. Please hear all of the prayers that are being brought to you on behalf of Emma Kate. And if it is not too selfish, please hear mine.
At around 9:30 I was finally able to go and see her and she is doing great! I spoke for a while with Dr. Clay (pediatric cardiologist on duty) and he went over more details about HLHS. Basic things that Bethany and I have heard several times but it is still refreshing to hear over and over again. I do like that each doctor has been consistent in explaining EK's diagnosis. He said that she is stable and everything looks good for surgery. The surgeon's will do their rounds tomorrow morning and will meet with us to go over her surgery schedule. It is looking like it will be either Friday or Monday.
When Dr. Clay was finished, Emma Kate's two nurses (Kim and Rachel) went over basic rules and guidelines for the CICU. They also explained each of her wires and said that two of her medications she was on at UAB (one for blood pressure and one for helping the heart pump) were removed because she didn't need them. The ports are still attached in case she needs them in the future.
After all of the information, I called Bethany and then just sat with Emma Kate. She slept for the 2 1/2 hours I was in there! I rubbed her head for the good majority of the time (she has so much dark hair!) and let her know how much we love her. I also told her about all of you praying for her. We also watched Misty May and Kerri Walsh win gold in Beach Volleyball which she thoroughly enjoyed! She will like the Olympics like her daddy and big sister.
I am planning on getting a good night's rest and heading over in the morning to hopefully meet with the surgeon. They gave me a pager and have my cell phone and room number just in case anything is to happen. I feel like our little girl is in good hands and am anxious to find out when her surgery will be. I am also ready for Bethany and Anna Brooke to get here tomorrow. Beth will be discharged sometime in the morning and they will head over shortly after that.
I took a few pics of her tonight but I will post those later. For now, good night and we will update in the morning.
For those of you wondering, Emma Kate will be in the Cardiac ICU at the Children's Hospital of Atlanta/Egleston. We are still not sure when her surgery will be but believe it will be Friday or Monday at the latest. We will know more when the surgeons in Atlanta have a look at her.
She has done so well so far and we are very hopeful that this will continue. We are getting close to the Norwood which has me a little freaked out. It is just so weird because she seems so perfectly healthy. But I know that inside her little heart needs help. Please keep praying that she will handle everything as well as she has been and that mommy and daddy will be able to handle it as well. We are definitely hanging in there and appreciate all of your support.
I will try to update tonight after she gets settled in Atlanta.
Bethany and Emma Kate are doing Great!! Bethany said this delivery was night and day compared to Anna Brooke. She had some trouble with the contractions but when it came down for EK to come, it was smooth sailing.
Emma Kate is doing amazingly well. She was born at 4:37pm and was 5 lbs 13 oz and 19 1/4 inches long. She is in the NICU now and is very stable. Her oxygen levels are moving around 97-100. She will be monitored all night and we will find out in the morning when she will be transported to Atlanta.
I am actually going home now (11:50pm) to get some rest (Bethany's cousin Marti is staying the next few days with Beth) as I will be driving to Atlanta tomorrow. Emma Kate will be taken to Atlanta sometime tomorrow and we would like for me to be there when she gets there. Bethany will head over on Thursday when she is discharged with her mom and Anna Brooke.
We aren't sure when her surgery will be but think it will be late this week or next Monday. The docs said after doing an echo and taking x-rays that Emma Kate's heart has no new conditions to be concerned with. This is great news. Her left ventricle is very small as is her aorta (2.4cm) but this is what they expected. She has no leaking in any of her valves and all arteries look strong.
I will try to update when I get a chance in Atlanta. Thank you all for your thoughts, prayers and comments. She is such a beautiful mild mannered little angel. Bethany and I both were able to hold her for a little while late this evening and she is so sweet. She kept looking around and sticking out her little tongue. I loved the fact that I was able to soothe her cries by just talking to her. Whenever I would speak, she would calm down to listen. She is already holding my heart!
Here are a few pics from the day... We will post more later.
Aunt Kristy (for Brooks)
We are SO VERY EXCITED to have Emma Kate with us. I know that we need to get rest tonight but I am sure neither of us will sleep. Nana just arrived from Virginia and will be on Anna Brooke duty for the next week or so. Kiki and Lito are heading up from Warner Robins in the morning and Marti is heading up from Auburn. We are thankful that we will have family with us and welcome anyone that would like to visit us. The same goes for Atlanta. Anyone that would like to see our little girl and pray for her and tell her to fight with all she has is welcome.
I will update as often as possible from the hospital at UAB the next few days and then again in Atlanta. I plan to update daily, if not more, with pics and various things that are going on. Until then, thanks for the prayers and I am anxious to show you pics of Emma Kate!
The month of July has seen quite a few ups and downs and plans being made and then changed as soon as they feel concrete. I write this now, feeling as if I know the plan, but understand that it could change any day. And I think I am ok with this... this utter chaos. It is teaching me patience like I have never known.
The Plan (as of 11:30am on 7/25):
-Emma Kate is going to be born in Birmingham at UAB Hospital. She is due August 24Th, but could obviously come any time around then. The goal is to let her come on her own time, but will discuss inducing if necessary. After debating having EK in either Atlanta or Birmingham, we feel it is in the best interest for all of us if Bethany just hangs around here until EK is born. The doctors said this would not affect Emma Kate at all as they often fly HLHS babies to other hospitals from UAB.
-Depending on how Emma Kate is after birth, we will wait a few days before transporting to the Children's Hospital of Atlanta where she will have her Norwood procedure. Bethany and I visited CHOA a few weeks ago and feel very confident that EK will be well taken care of.
-While in Atlanta, we will be staying at the Ronald McDonald house a block away from the hospital. We are very blessed that this facility is available and so close to CHOA. We also have several volunteers (Kiki, Nana, etc.) to help love on Anna Brooke and all of us during this time. We are so thankful for this and could not get through this without their support.
We feel that this "plan" is our best option available. Having the logistics figured out has gotten us very excited for Emma Kate's arrival. We are also scared to death of her surgeries. Part of me knows that everything will be alright and the doctors know what they are doing. But part of me cries daily with the fear of something going wrong... for some reason losing her. I try to push those feeling's away, but they creep up from time to time. It is a genuine fear that I have. And I don't know how to make it stop.
Please keep praying for Emma Kate... and for Bethany, me and Anna Brooke. It has been hard but I know blessings are just around the corner. Thank you for your love and support. It means more than you know.
The thing that I struggle with most is wanting to say something important. Wanting what I write to matter. Wanting what I think, what I feel, what I do to make a difference. I think this is something that we all struggle with. We struggle with wanting to be liked... wanting to be important... wanting to have worth. We call friends and vent about our problems because we want our problems to matter. We give advice that we feel is best because we want our words to be important. We tell stories and write blogs so that what we have seen and what we have done has significance. In the end, I think we just want to be loved. But often we are selfish and want to be loved more than we want to love. I am guilty of this. And for this I apologize. I want to be better at loving others. And in a non-selfish way, maybe this will make a better impact for the world that I desire. And I hope that I can begin to use my experiences as lessons along the way. That I could gain Wisdom from all situations in order to be a better man.
This is where I have been this month:
-A few doctors appointments to learn more about our sweet Emma Kate. She is growing well and it looks as though her heart is in good shape for surgeries. It also appears that everything will be able to take place in Atlanta. Praise God for this! This, needless to say, is a blessing that Bethany and I had not even anticipated. It will definitely be a comfort to be surrounded by family during this time.
-Biloxi, twice, gambling so that I could win millions, buy everything Bethany and I ever wanted or needed and all would be right in the world. Both times came away with more than I walked in with and still felt empty. Though I try to convince myself over and over again, it will never be the money that will make me happy. I truly do enjoy playing roulette though. And for some reason... I am good at it. haha
-The Dentist which led to the Oral Surgeon. I like how everyone who talks about getting their wisdom teeth removed all have the same awful reaction. It was very encouraging to hear such "fun" experiences BEFORE mine were removed. And yes, it has been rough and I still don't have feeling in my bottom lip and chin (4 days later) but I will try to be kind in my recollection to those about to endure the experience. And I am thankful for my wife and her ability to comfort and nurture. God has blessed my wife with many wonderful gifts and for some reason blessed me with the rewards.
-Warner Robins to visit my family. It is always way too short a visit and always way too long in between visits. The highlight of the trip was definitely watching my mother dominate the "hula hoop" on the wii fit. It was nice to see us "gamers" fail only to watch mom set the bar high. Keep it up Mom!
-Golfing with Todd and Chad at Farm Links for Father's Day(I didn't forget Megan! But it definitely needed to be a highlight!). Anytime I get to play 36 holes of golf it is a great day but this course made it better. And I was proud of my new found discipline. I didn't drink any of the coke in the glass bottle!
-Virginia to watch my Brother-in-Law Zach graduate high school. While working his after-grad party I realized that I am a lot closer to 30 than I am to 18. And I am strangely ok with this. And I realized that I still love Washington D.C. Something about the city reminds me of being 10 and wanting to be President. Seeing the Declaration of Independence and reading what "ordinary" men wrote and visioned for a country not yet formed is inspiring.
This month has been long and hard, but it has been good. It has been full of lessons that I am seeking hard to grasp. They are pointing me towards a life that perhaps will be difficult. But God has provided me with the tools necessary.
In Troy, Odysseus says "Men are haunted by the vastness of eternity. And so we ask ourselves: will our actions echo across the centuries? Will strangers hear our names long after we are gone, and wonder who we were, how bravely we fought, how fiercely we loved".
My actions may not be echoed across the centuries. But I hope they will make a ripple today. For what I do today matters more than I give credit. And if I can give my all today with love to those that I know, then perhaps this will make more than an echo throughout eternity.
I guess it started when Bethany and I were heading out to our Pediatric Cardiologist appointment. Bethany's sister, Erin, came over to watch Anna Brooke (which she has done several times) and Anna Brooke pitched a fit (she has a hard time whenever Bethany leaves her and makes herself throw-up). And, of course, she ate the whole bowl of Cheerios's. So after cleaning up her mess and leaving a screaming child in the hands of her poor pregnant aunt, we head to UAB with only 30 minutes to get there and find a parking spot. We make it to the parking garage in about 25 minutes and drive through all 5 levels, finally finding a spot in a corner as far away from where we need to be as possible. We make our way to the doctors office and arrive only five minutes late. Not too bad all things considering.
After waiting only 45 minutes (note to self: no need to ever worry about being late here) we are called back to our room. The appointment was similar to the last: Dr. Colvin looked at Emma Kate's heart for a while and explained what he was looking for and what he saw. He said the pulmonary artery looked good and that blood flow was going to and from all the places necessary for surgery. One issue that he was struggling with getting a good view of her aorta. He said he believed it was just under 1mm (very small but not abnormal with HLHS) and that he would look again at our next visit.
We asked him a few questions and were kind of shell-shocked with his answer to our last question. We asked when we could meet the surgeon for Emma Kate. He asked our due date (Aug. 24th) and said that they are having a change of command (not sure when or who) and that Emma Kate might have her first surgery at the Children's Hospital in Boston. I think we were both a little stunned as we didn't ask any questions after. We left our appointment and just started talking about everything. And we are left with tons of questions...
How long after she is born will she be flown to Boston? He said that she would still be delivered at UAB, so how long until her surgery? Will we fly with her? Hotels? Insurance? Work? What do we do? Obviously we will be with her... but what about Anna Brooke? It is going to be hard enough on her even if the surgery is in Birmingham. I love my Anna Brooke and we want to make this as easy on her as possible. And a lot more questions that I can't think of right now.
And then all i could think about was Boston. Bethany and I have wanted to take a trip to Boston for a few years. I love the Red Sox (I liked them before the bandwagoners-mainly because of the "B" on the hat). I want to get a shirt from Harvard , see the old north church, walk through Boston Common and get a picture of us on Yawkee Way. And all I kept picturing was taking my wife and two girls to a baseball game and eating hot dogs. I want to go to Boston but not like this.
That is when I broke down. I think this is becoming more real to me. In the back of my mind, I keep hoping that this is all a mistake and her heart is healthy. But this is reality. My daughter has HLHS. She will have open heart surgery a few days after she is born. Whether her surgery is in Birmingham or Boston (where the majority of all HLHS surgery cases I read seem to take place) or anywhere else in the world I don't care. I want her to be in the best hands possible. Because one day my wife, two girls and I will go to a game in Boston. And we will visit Nana and Papa in Germany. And we will go spend a week at the beach with Kiki and Lito. And all of this crying and worrying and wondering will be better spent laughing and playing and growing. Even though I hate this, I am ok being weak right now. Because I know that I will be strong for her when she is born.
One of the greatest impacts made in my life has been by my mother. She gave me life. Not only in a literal sense but she helped create my thoughts, my personality, my interests. Our personalities are so similar it is scary. She is why I am an optimist. In every situation, she knows that there is a purpose and a positive outcome. To see all that she has overcome in my 27 years inspires me to have no fear. She wanted to comfort us through her cancer... who does that? I am thankful for her smile, her laugh and most of all her conversation. No one else can I call and talk to for an hour and a half about nothing and feel like I have gained something from it. She has sacrificed so much in her life so that I could have more. I strive to make it worth it for her. I said there aren't enough words and there never will be. I love you mom. You will always be my hero.
As I have been inspired by my mother, I have also been blessed to grow up so close to my grandmother. Throughout the course of my life, she has been a mother, grandmother, friend and supporter of mine. If I ever need words of encouragement or uplifting, she is there. I'm not sure she knows it but hers are the words I look for when I am feeling down. I have always felt loved by her from her actions. She always seems proud of me even when I feel I am nothing. That means more than she could know. I love you Grandma. And I love your macaroni :)
As I was thinking about the "mothers" in my life I can't help but laugh when I think about the next one. My sister is 16 months older than I am and now has a 2 1/2 year old son. But she has been working on becoming a mother for 27 years! From telling me "NO NO!" (my first word) to waking me up for school (in high school), she has always been there to make sure I am ok and taken care of. The parts of motherhood that she has already mastered are being loving and caring. She is so good at caring for her family (all of us) and making sure everything is the way it should be. She is the only other person in the world who came from where I came and I am blessed that I can call her my sister. I love you Kristy. You are what the French call "merveilleux".
The next mother became my mother a little more than 3 years ago. When I married Bethany I could have never imagined how much I would rely on my mother-in-law Dixie. From her words of guidance and wisdom to her care and concern for my well being, she has given me the assurance that she will always be there for me and my family. She lives a life in a manner that Bethany longs to live and for that I am blessed. She has accepted me in her life as a son and I will always look to her as a mother. I love you Dixie. Thank you for the gift I always prayed for!
When I met Bethany, I called my mom in the middle of the night to tell her. I can still picture her in that black shirt and jean shorts. I was so taken by everything about her. We talked on the steps of the Marvin Pittman building (administration offices at GSU) for 3-4 hours and deep down I knew that I wanted to grow old with her. As we dated over the next five years, I could no longer picture my children without seeing her as their mother. After only a year of being married, God blessed us with our first child and Bethany began doing was she was created to do. To be blessed with Bethany as the mother of my children is more than I deserve. She asks me all the time why I love her. I cannot imagine not loving her. She is the only person that can make me smile the way she does. She is the person that makes me want to know who I am. She is the reason I stay up at night wondering what better I can do to provide for her and my girls. She makes me want to become a better man. She is my rock and she loves me for who I am. I love you Beth. Du machts mich glucklich.
These women are why I am who I am. And they are the reason that I want to become more.
"You've got so much up ahead
You'll make new friends
You should see your kids and wife
And I'd end up saying have no fear
These are nowhere near the best years of your life".
I would tell him that it all works out wonderfully. There would only be a few requests...
Spend more time with Mom and Kristy... you will still be close, but won't see them nearly enough.
Go get to know Dad... you will miss him more than you can imagine.
Go visit Cheyenne... you don't know her at all now.
Take Grandma and Grandpa out for dinner... you still learn so much from them.
Let Granny know that she always made you smile.
Work Out!... You are still lazy, but trying to overcome it.
Don't sweat not going to UGA... Your best friends and wife are at Georgia Southern waiting.
DON'T GET THE MBNA CARD!... It was way too stressful paying it off.
Tell Chad (while spending another late night over pancakes) the who's and the when's of our future are incredible... You should see your kids and wife!
Donate blood... It will mean more to you later.
In the end I would say enjoy it all. You are blessed more than you deserve.
Perhaps the lesson in all of this is to see the things that we didn't do well and attempt to do a better job now. To make sure that in 10 years we can look back and see less regret or things unfinished. I wonder what 37 yr old Brooks will have in store for me... I am excited to find out.
Tomorrow morning, after our Little Einstein/Backyardigans/Dora time, I am sure we will head to the park and let Anna Brooke exert as much energy as possible. She loves to swing and slide, as I am sure all 2 year old's do, and it wears her out for nap time! I know that sounds awful, but sometimes her naps are a blessing! Tomorrow evening, we are heading to the church for "secret church" (I will blog on that later) and Aunt Erin and Uncle Josh are watching AB. They have been so awesome in watching her so often! We are excited for our nephew Jackson to come so we can return the favor!
On Sunday, after church, I think we are going to drive around and look at houses. This has become a hobby of ours as we hope to find the "perfect house" soon. Not that we haven't enjoyed our apartment for the last two years, but living on the third floor is going to be tough on Bethany with a 2yr old and a newborn. It would just be great to have a yard... and a garage... and no three flights of stairs. So hopefully we will find a house that is just right that we can somehow get into before Emma Kate arrives.
We don't have any appointments for a while (May 28th is our next one) but I will be sure to update when we learn anything new!
The first is the first site I found with a child with HLHS. You can go to either www.babysamson.com or http://www.wonderbliss.com/ . They named their son Samson because they wanted him to have strength. I think that is awesome. He is scheduled for his third surgery, Fontan, on May 21.
The second site is http://www.olivia-ann.com/wordpress/. This little girl has completed the three surgeries. The mother's stories of her pregnancy diagnosis and her eventual letters to the doctor (he told her she should terminate the pregnancy) are amazing.
The third site is http://babyabbysheart.blogspot.com/. Abby has had the first two surgeries and has an older sister named Anna (so this obviously touched my heart).
I have been completely blown away by the detail of these ultrasounds! It is so incredible to see Emma Kate inside and out. It makes me wonder.. how do people not believe in a Creator?? Emma Kate is so tiny, yet so complex. It often takes things like these to make me realize how incredible God is. And He is even more than I can fathom. Shirts today claim Jesus to be our "homeboy" but He is so much more. He is our friend, He does want an intimate relationship with us and He does want us to recognize him in a personal way but more than that He wants us to recognize that He is Holy.
Nichole Nordeman, who is an amazing songwriter, wrote:
"You came and chose to wear the skin of all of us.
And it's easy to forget You left a throne.
And the line gets blurry all the time.
Between daily and Divine.
And it's hard to know the difference.
Oh, let me not forget to tremble.
Oh, let me not forget to tremble.
Face down on the ground do I dare,
To take the liberty to stare at You.
Oh, let me NOT...
Oh, let me NOT forget to tremble."
It is my prayer today that I would not forget to tremble in His presence. That through these trials and even during times of joy that I would not forget that God is the creator of all things. He spoke and we came into being. HE IS HOLY!
To say how I am feeling right now is difficult. My heart is broken that the flesh of my flesh is hurting and I cannot help her. I feel weak and helpless for what my daughter will go through. I am terrified of needles (although terrified probably isn't strong enough a word) but I would go through it all so that she wouldn't have to. I am clinging to the promise that God's grace is sufficient. His power is made perfect in our weakness.
I also firmly believe that God is in control. In the garden Jesus asked God to take the cup away. This was my prayer. Please take this cup away from Emma Kate. But Jesus was faithful to His purpose. Not my will, but Yours be done. What a difficult prayer to pray!
But this is our prayer: God, we do not understand Your ways but we know that Your ways are perfect. Though they may seem difficult at first, Your ways are right. Your ways are best. "As the heavens are higher than the earth, so are Your ways higher than my ways and Your thoughts are better than my thoughts. As the rain and the snow come down from heaven, and do not return to it without watering the earth, so is Your word that goes out from Your mouth: It will not return to You empty, but will accomplish what You desire and achieve the purpose for which You sent it".
I also wanted to share a little bit from our sermon at church yesterday:
(We have been attending the Church at Brook Hills in Birmingham. The pastor, David Platt, is truly a man of God. To hear memorized scripture pour from his heart is inspiring. Not because it is memorized, but because it is learned. It is hidden in is heart. It is a fire shut up in his bones that indeed he cannot keep in. Oh that this could be my heart's desire. To desire God in such a way that I would meditate on His word with such passion, that I would hide It in my heart so that I wouldn't sin against Him).
David has been talking about salvation the past few weeks and yesterday discussed grace and faith. Grace is given to us through salvation even though we do not deserve it. This is a concept that we learn very early in church but something that really hit home yesterday. Salvation isn't something that I was handed at the age of 7 and then put in my pocket. Salvation is given to me daily. Every single day. Even though God showed me grace yesterday, I still do not deserve it today. I still have nothing to offer. But He is faithful to complete what He has started in me. Every single day. And what is so amazing about this grace? He doesn't expect or need anything in return! What could I give God anyway? For even in my best attempts, I am still wretched. I am still ruined! But through the grace of God and the blood of Jesus, he does not see this ruin. He sees His Glory reflected back.
This is where we come in... through our faith in Jesus. David put it like this: "Faith involves radical dependence on God's work in our lives. We need HIM to mold our hearts. We need HIM to empower our lives." He does not need us for apart from Him we can create no good thing. But... But, when we put our faith in God and rely on him with a "radical dependence" then God receives all the Glory! What a beautiful picture of how His Grace for us and though us allows us to bring Glory to Him!
I wanted to thank you all again for your faith in God for Emma Kate. It has definitely inspired me to have faith in her healing. Bethany has her appointment on Wednesday, April 30 at 8:00 am central time. We will let you know what we find out.
I say all of that to say this: I praise God that she has a heartbeat. I praise God that inside of Bethany, she already has her mother and her sister's nose. I praise God that she is Fearfully and Wonderfully Made. I believe that God creates all things... ALL THINGS perfect. He does not make mistakes. He is perfectly knitting the fabrics of Emma Kate's being as I type this. This is why I have the problem with the term "defect". It makes it seem like a mistake, an accident, an error. Nothing about her or any of the people who are born with this is an error. Just a condition that causes one to fight harder, pray harder and rely harder on God.
And this is where I am stuck. How do I pray? Obviously we want Emma Kate to have a healthy heart. We want on Wednesday morning to hear the Specialist say, "there must be some mistake, you don't need to be here. Her heart is perfectly healthy". Is it selfish to fall down on my knees and say "God, please heal her now. Please heal her so she doesn't have to go through all of this"? Is it wrong to not expect a miracle? Is it wrong to pray these things and then continue to research this condition with the anticipations that these surgeries will be a necessity? I am thankful that God has given wisdom to the men and women who perform these surgeries. What a miracle it must be to touch and infants heart and help it beat.
I pray that God will be given the glory in all these things, regardless of the situation. I pray He heals Emma Kate, either in the womb or through the doctors after she is born. I pray that God will give encouragement, wisdom, reassurance, comfort and patience to both myself and Bethany.
And I pray that I can become more concerned with others than just with myself. Why is it that we become advocates of a cause only when it directly affects ourselves, or our own gain? I long to care for the people of this world as Jesus did. To put him first, then others, then myself.
Please pray for our sweet Emma Kate. She is nestled up comfy and cozy inside Bethany right now and knows nothing different. Pray that God will be glorified throughout his healing of her heart. And pray for the other little children that are in various stages of surgeries as God heals their hearts.