Almost Home

We are sitting in the CICU still. Emma Kate was given floor orders this morning but there are no beds available in the step-down unit. So we wait in our own little private room in the icu and hope another family is discharged so we can get one step closer to Birmingham. EK is doing awesome. As I write this she is snuggled peacefully in Bethany's arms and they are both content. And all I can think about is home.

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.


My Girls

The past week seems to be a blur in my head. A week ago this evening, I sat in the Cardiac ICU with a day old Emma Kate uncertain of her future. Not knowing when her surgery would be. Not knowing how it would turn out.

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.



We are about to head up to see Emma Kate and we got great news. She was extubated (breathing tubes removed from her mouth) this morning! The doctors and nurses have been very impressed with her breathing and were slowly weening her off the machine. They told us last night they were going to run a few tests and see if she could handle breathing on her own. We were expecting her to be extubated tomorrow morning but this is a very pleasant surprise. Seeing those tubes in her mouth has been one of the harder things of this process because she seems so uncomfortable. When she cries, there is no sound, just a red squished up face. We can't wait to go kiss those sweet little lips and hear her cry as much as she wants to! What a good way to start the morning!


48 Hours

It has been 48 hours since the doctors took Emma Kate away for her Norwood. They told us that the first 48 hours are the most critical after surgery. So far, EK is doing better than I could have ever hoped.

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.


A Day of Heroes

It has been a very long day. As I type this, it is 12:15am and my wife and two daughters are sound asleep. And at this exact moment, I have peace. For today I have cried many tears and tried to laugh when I could but tonight all is as right as can 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.

Emma Kate Is Done With Surgery

Just spoke with Dr. Kirshbom and he said Emma Kate did great. We will see her in about an hour and I will update with all details after we see her. We just wanted to let you know that her surgery went well.

Emma Kate in Surgery

We found out this morning that Emma Kate was moved to the first case. We walked with her up to the OR, and around 7:35am, the OR nurse said that Dr. Kirshbom should begin between 8:30 and 9:00am. The nurse will give us a call when they have begun. And she will also call every hour during the surgery. Bethany was able to hold Emma Kate for a few minutes. And when we walked with her to the OR she was wide awake looking around at everything and everyone. Thank you for your prayers and we will keep you updated.
Brooks and Bethany


Emma Kate's Norwood is Tomorrow (Friday)!!!

I got to Egleston this morning around 10:00am just as the morning rounds were wrapping up. They don't allow anyone in the CICU during rounds so this was my plan. As I walked in, I saw Tracy (surgery coordinator who Bethany and I met last month on our visit) and she said that the plan was to have Emma Kate's Norwood tomorrow morning. She wasn't 100 % sure, but that is what she believed was the plan. She also said that Dr. Kirshbom would be doing the surgery. This was definitely a blessing as we have heard that he is very skilled in the Norwood. (Obviously all the doctors here are good at the procedure, we have just heard that he is the best).

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.


Emma Kate is at Egleston

It is about 12:30am est and I have just left Emma Kate in the Cardiac ICU at Egleston. I arrived in Atlanta around 6:15 pm est and checked into the RMH and headed over to Egleston around 7:15. Unfortunately this was during their shift change so I had to wait around for what seemed like forever. I was assured that EK was indeed at the hospital and that the cardiologist was doing an echo on her.

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.

Heading to Atlanta

We just got word from the transport team that they will start loading Emma Kate up in about an hour (2:15pm cst). The nurse practitioner believes that they will be taking her by ambulance because she is stable and not on a ventilator. I will be following the ambulance so I can be with EK when she gets to the hospital.

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.


Pink Bundle of Joy

It is late and I had typed a long long post about how great of a day it has been and it didn't save. I will type something again tomorrow when I get to Atlanta.

To summarize:

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.

Emma Kate is Here!!

Emma Kate arrived at 4:37pm (cst). She weighed 5lbs 13oz and looked great! According to her Kiki and daddy, she's "very pink" and has lots of dark hair. Brooks will post pictures as soon as he can. Brooks said Bethany is doing well and feeling very good. The doctors have already taken her down to the NICU, but Bethany was able to hold her before hand because Emma Kate was doing so well, and Brooks was allowed to cut the cord. Emma Kate was even given an APGAR score of 8/9 out of 10 (and they rarely ever give 10's), so this is wonderful news. Brooks said they should be able to go down to NICU to see her around 6pm (CST), so I'll post more once we've been updated. Thanks to everyone for all of your good thoughts and prayers!!
Aunt Kristy

Update #2

This is Kristy again (Brooks' sister). Just wanted to post another quick update. My mom just called where she and some other visitors have been sent out to the waiting room. The nurses are wanting Bethany to rest for a while, so Brooks is keeping her company. Bethany is now measuring at 6.75 centimeters, and her contractions are 1 to 2.5 minutes apart. She and Emma Kate are still doing well, just getting a little tired! That's about all for now. I will post again as soon as I hear more information!
Aunt Kristy

Update #1

Bethany is already dilated 4 centimeters (which is good news!). She is getting her epidural as of 10am (cst). Her contractions are anywhere from 1 to 4 minutes apart. The doctors are impressed with her progress, and continue to keep an eye on her and the baby. Once the epidural is in place, the doctors will break her water. There is one concern: Emma Kate's heart rate drops after a contraction. The doctor viewed this and felt everything was okay for now. We have also spoken with the pediatric NICU doctor, and he has said that if Emma Kate is stable, she should be flown to Atlanta either tomorrow or Thursday. We will keep you posted on further updates.
Aunt Kristy (for Brooks)


August and Everything After

I know I said I would get better about posting but we have been busy the last few weeks. We are now all settled in our new apartment which is a good thing being that Emma Kate will be born TOMORROW! The doctor told Bethany last week said that this would be a good week to induce and picked Tuesday so EK could be flown to Atlanta mid to late week. We obviously don't know when she will head to Atlanta but think it will be Thursday or Friday. We are heading to UAB tomorrow at 8am. Hopefully things will go quickly for Bethany!!

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!