by Christine Méndez, Illustration by Rafael Vilá

This is the story of Kaitlyn Bree ...One of the CHD Warriors, One of the Too many special Hearts ...A very Special Girl for me. Kaitlyn has fought as all the warriors do! I have been following her story ever since I became A Warrior For CHD and you, Kaitlyn... taught me what A fighter we can all be. You are only 1 year old but You have taught me that there is no giving up and that if you fight we can all fight and win because after all there is no loser in this war. All The warriors Fight and giving up is not an option for them and those who are in heaven Fought and are all heroes in our life. I will never stop praying and spreading hope and awareness with you little Warriors and in my wish to never stop I have a dream and it is to Meet you all one day ...does not matter where and when but I will meet you.

To The Group ..to my team, to members and friends, to the many people who receive this wonderful and blessed Digital Magazine I will Love for each and everyone of you to make a stop for one second and put your hand over your heart and think how much we have and how much do our children need , After thinking ...Thank God for all you have and then allow your soul to give the most big recognition of love to our babies ...Love them, Pray for them and hug them with Awareness ...
Always and Forever... Christine

Narrated by Christina Bree

Ever since I could remember I have dreamed about getting married and having children. Well about two years ago I was told that I had a very small chance of ever getting pregnant. At that moment in my life I was devastated, I couldn’t believe something I wanted so badly I would never be able to have. Then about six months later I met Michael, the love of my life. We started seeing each other and fell in love instantly, we were and still are everything to one another. Then about a year after us seeing each other we were given then best gift in the world, we were expecting. We were a bottle of mixed emotions, happy, excited, scared, nervous, you name we felt it.

I still remember going in for our first ultra sound appointment, it was the greatest feeling in the world seeing our little baby for the first time! The technician showed us her little feet, her legs, arms, and her cute little hands. She always had her hands in front of her face little stinker. Even before the tech. told us it was a girl, we both knew. We even had her name picked out, Kaitlyn Bree. We were so happy and so excited, it was the greatest feeling in the world. But the technician kept going over Kaitlyn’s heart and then she went out to call the radiologist and she did that about four times. I remember telling Michael that there was something wrong and he just told me not to worry everything was alright. So that night we went out and celebrating the life of our little girl, it was the greatest diner we had ever shared.

The next day I went to work just like any other day and I got a phone call that would change both our lives and our little girls life forever. My OB/GYN called to tell me that I needed to come up to Perinatology Office where they have better equipment to look at our babies heart. I remember asking her what was wrong with her heart and she was telling me that she wasn’t exactly for sure but it was very serious and that I needed to come up right away. I called Michael at work in tears telling him that he needed to meet me at the hospital right away that there was something wrong with that baby. I think we both got there within minuets. We had quite a wait in the waiting room, which hard in itself. Michael and I just held each other praying that our baby girl was fine.

About after a half hour of waiting the nurse brought us back to this room with a big screen on the wall and a huge ultra sound machine right next to the bed. When the Dr. Robertson came in, Perinatologist, said that he has looked over the original ultra sound taken the day before and he needed to look over the heart because the technician couldn’t’ get a big picture, but he told us not to worry it was probably nothing. About after fifteen minuets of him looking another doctor came in, Dr. Danford, a cardiologist, took a look for himself. This was when Dr. Danford took my hand and said that our baby girl had a very saver heart condition called Hypoplastic Left Heart Syndrome. I honestly don’t really remember much about that day except for Michael and I holding each other crying. I have never seen a man cry so hard in my life. We were so scared that we were going to loose our little miracle child. Dr. Robertson and one of the cardiologists Dr. Danford, come in and talk to us and explain what HLHS was and how serious it was. We were told that at that time one in 100 babies have a type of congenital heart defect and four in ten thousand have HLHS. He explained to us that it is a very serous defect and it would require a lot of special care to save our little girls life.

That night Michael and I made a pact that no matter what was wrong with our little angel and what the future would entail for her, we would not give up on her. Over the next few months we had a series of appointments and tests to make sure Kaitlyn was growing normally and to make sure there were no changes in her heart. Around 7 months we met the surgeon that would be working on Kaitlyn, Dr. Hammel. He went over what HLHS was and what the treatment options were. He explained that we had to make a choice and we had three options. One was do nothing, take our baby girl home and watch her die (comfort care), two a series of three open heart surgeries, and three, heart transplant. We knew right away that we wanted to do the series of operations. He explained to us that a few days after Kaitlyn was born she would need her first set of three surgeries. He said that we should be prepared that she would look very purple when she is born and would probably need a breathing tube. It was all a little bit overwhelming to us, but we knew she would be in great hands.

Over the next month I had appointments every week, sometimes twice a week, since it was getting so close to delivery. We had decided with my OB/GYN, Dr. Itkin that we would do a planned C-section to help reduce the risk on Kaitlyn. On September 14, 2007 I went in to see if we could be expecting our little angel. Well she was ready to come and at 12:40pm little miss Kaitlyn Bree was here. They held her up for me to see and she was so beautiful, she was pretty purple, but she was breathing all on her own. She didn’t even cry, she just let out a couple of whimpers. She weighed 6lbs, 13 oz, and was 19 inches long. They took her back to the NICU to get her hooked up to IV’s and medicines. About an hour and a half later I was wheeled to the NICU to finally get to see and hold my baby girl. It was the greatest feeling in the world to get to hold my baby girl for the first time.

Over the next few days Kaitlyn had a heart echo which showed that she was truly an HLHS baby like they had expected with quite a small aorta. She did prove to be a very strong baby girl, she never needed to be put on the vent, not once. She just had to be under the nitrogen hood until her surgery to help keep her O2 levels up. She had her first open heart surgery when she was only four days old. She was taken in early that morning, all of our family was there to give her kisses and hugs and then Mike and I walked her down to the OR to tell her good-byes and good lucks. It was the hardest thing we have ever had to do was hand our baby girl over to the surgeons knowing she only had a 75% chance of survival. I remember that day very well it was one of the longest days of our lives. Her surgery was only supposed to last 6 hours and 8 at most, well Kaitlyn had other plans. She thought she would give the surgeons a challenge, and that she did, she really did. When they started to work on her aortic arch they realized that Kaitlyn’s aorta was much smaller then anyone had thought and while trying to repair it, “fell apart”. The doctors came out to tell us what happened and to let us know that Kaitlyn was having serious problems and that they were having difficulties controlling the bleeding. I was so scared that we were going to loose our baby girl before we even got a chance to get to hold her. After thirteen hours of surgery and six hours on bi pass Kaitlyn was finally out. She was not out of the woods yet, and there was a chance that she could start bleeding again, but she was out. They then took her to the PICU where they then hooked her up to monitors and got her all ready for us to come see her.
It took nearly two hours before we were able to go back and see her, but when we finally did no words can describe how I felt. Kaitlyn was laying there on the table so helpless with a breathing tube, an iv out of both wrists and both feet, pumping all the necessary medicines she needed to stay alive. But the thing I will never forget was her chest wide open to prevent swelling. I remember seeing her tiny little heart beating through a tiny piece of surgical tape. That night I stayed by her side for almost four hours and then Michael and I had to go rest. She did pretty well that night she through a few PVC’s here and there and an irregular heart rate and high blood pressure, but all that is to be expected. Over the next few weeks Kaitlyn had a few complications but nothing horrible and a month later Kaitlyn finally got to come home with us.

October 18, 2007 was the best day we had in a long time, that was the day we finally got to bring our little angel home. It was the greatest feeling in the world to finally walk out with our baby girl. We only had her home for about a week before we had to go back to the hospital. But that was the best week ever. We got to do all the things we never had a chance to do in the hospital. We got to give her first real bath, which I do have to say is a lot harder then it looks. We got to just all be at home and be a “normal” family for once.

But then on October 26, 2007 Kaitlyn was being extremely fussy and just wasn’t herself and we were told to take her to the ER. We later found out that Kaitlyn was extremely dehydrated and needed IV fluids. So believe it or not we were back in the hospital. The next day they did a heart echo just to make sure that her heart was doing great. We when we got the results back we go a little more then we had expected. It showed that Kaitlyn’s aorta was slowly closing off and that she would need a heart catheter. To balloon it back open and possibly a stint. They sent her echo to a heart catheter. Specialist in Cleveland who decided that it could wait a until November 8, 2007. On October 30 we were discharged and able to go back home and celebrate our baby girl’s first Halloween.

The night before her heart catheter was one of the hardest nights I have ever had. I kept having this horrible feeling that something horrible was going to happen the next day and I begged and pleaded to cancel the characterization. But I knew in my heart that she needed it or she would die. I still remember that night till this day. She played in her glider most of the night laughing and smiling, she was such a happy little girl. Then we all sat on the couch together and just held each other as she fell asleep in our arms. The next day we got all of her stuff packed and ready to go. We had to be there around 10 that morning so it was an early start. When we got there her grandpa, my father, was there waiting to give her hugs and kisses. Then it was time to go back to the C.A.R.E.S Unit and get her ready for the procedure. Everyone came back to give Kaitlyn her hugs and kisses and then it was time for her to go. Having to kiss my daughter one last time yet again was so hard. I prayed and prayed that the feelings I had were just of a worried mother.

After they took Kaitlyn Michael and I went out to the Lobby to try and stay busy. We were told that it was a pretty routine procedure and that the death rate was less then 10%. So Michael had to go back to work and me and the family were waiting for this to be all over. Well not even hour after her going in a nurse came out and asked me to come with her. I hesitated but I found the strength in me to lift myself up from the chair and walk with her. Then it hit me half way across the lobby, I demanded to know where my little girl is and what was going on. She said that I needed to come with her and she would talk to me, but I would not move. The next thing I remember is falling to the ground and saying no she’s fine your wrong. My mom and Michaels mom both rushed over and asked what was going on and that’s when I knew that I wasn’t dreaming Kaitlyn had stopped breathing. They then helped me get off the ground and take me to the C.A.R.E.S Unit to talk to me more. The nurse said that the narrowing was way worse then anyone had expected and that even before they had started the procedure Kaitlyn’s heart just gave out, she just wasn’t strong enough. Over the next hour was a major blur I remember the nurse going back in forth between us and Kaitlyn. After about 10 minuets after this Michael comes in and that’s when we both fell apart together. We just held each other and prayed to God to save our baby girl. After what seemed like an eternity the doctor came out and said that Kaitlyn is on the echo machine and is on a breathing tube but is alive. They were able to finish the heart catheter and place the stint.

Over the next few days Kaitlyn started to stabilize and seemed to be doing very well. She hadn’t woke up yet but her vital signs were stable and strong. So two days later the doctors decided that she was ready to go down for and M. R. I. to find out how much brain damage she sustained. I went with her as they rolled her down to the M. R. I level I gave her a kiss on the forehead and told her to be a good girl. Well the technician came out a wheeled her bed in and slowly lifted her off of the table and even before he could set her down she feel limp and the machines all went to zero. I remember the Code 4 siren going off and then the tech. yelling she’s not breathing and rushing her off to Emergency Room right down the hall. All I could do is stand there and watch. Looking at my daughter not breathing and watch everyone fight to save her life once again. Not even two minuets later Dr. Hammel comes running down the hallway screaming get out of my way, let me in. At that point I was freaking out demanding they tell me what was going on and begging them to save her life. At one point I remember falling to the floor screaming at the top of my lungs pleading with God to not take my baby girl. That’s when my mother came and sat down beside me holding me telling me she was going to be fine. I was so scared, my little girl was dying right before my eyes and there was nothing I could do. I had to see what no mother should ever had to see, their child not breathing. About after 25 minuets Kaitlyn was put back on echo and was “alive” again.

After about an hour she was moved back up to the ICU while on echo, she was in very critical condition. We were told that they did not know if she would make it through the night, but we never gave up hope. Then Dr. Hammel and another doctor came in to talk to us once again about what happened and what they had thought on the situation. They explained to us that Kaitlyn’s brain was severely damaged and that there was very little if any chance that she would ever wake up. They told us that babies with little brain damage could be a vegetable and babies with extensive brain damage you would never know. At this point we just had to sit and ride it out. They wanted us to know that if we were expecting her to be “normal” then we to know that will never happen. We then told them that she has never been “normal” and that just because she wasn’t going to be rocket scientist that we would give up on her. We explained to them that we were in this 100% and that when Kaitlyn was ready to give up she would let us know, but until that time we will keep going forward. Kaitlyn remanded on echo until the next day and we were told that this was very risky because if she wasn’t ready to come of they would have no open source to hook her back up. We all said a prayer and told her that we are always with her and left the room as they took her echo. Thankfully she came off very well and was holding her own.

Eventually we were able to get another M.R.I. done to find out what the damage was and how bad it was. When we got the results it was hard to see to say the least, it showed that she had devastating brain damage. They said that she had suffered from at least two strokes that effected pretty much every part of her brain. They explained to us that they thought that she would still never wake up and that if she did she would probably need a track to breath and that she would never function as a “normal” child. But we told them that we would take our chances, and that is what we did.

Over the next few days Kaitlyn was very stable but still hadn’t woken up and shown not signs of stimulation. About a week later Kaitlyn was moving her limbs and we were told that it was involuntary muscle movement, but we knew in our hearts she was telling us she wasn’t ready to give up yet. I think that it was close to two weeks later Kaitlyn finally opened her beautiful, blue eyes and at that moment my heart melted. At that moment we knew she was going to make it. We just kept taking every day, day by day and just watching her improve everyday!

She finally was well enough to be in a private room which is where we spent our first Christmas. It was the best Christmas ever, she looked so beautiful in her little red dress, what a gorgeous baby girl! We had a lot of good times in that room and met a great friend who we spent almost four months getting to know. Unfortunately Kaitlyn developed a blood infection and had to have six weeks of IV antibiotics. During that time they did another heart echo to see how things were going and were concerned that her shunt maybe clotting off. They had to do another heart catheter, and thankfully that went very smoothly and they noticed that there was nothing going on with her shunt, it was working perfectly. But she was ready for her second stage of surgery. We were told that they would schedule her second stage in about a week and that’s when Michael and I sat down and asked them if we could bring our little girl home, even if it was just for a week.

After awhile of convincing Kaitlyn finally was able to come home in February, it was so wonderful to finally have her back home, nerve racking but wonderful! Michael took a week off work and we spent the whole week together just enjoying having her home! The day before her surgery we realized that we have never taken Kaitlyn outside to experience the world and that’s when we knew we had to do it, we took her to her first bookstore. I loved walking in with my baby girl just like every other parent and feeling that since of “normalcy.”

The next day was the day of her second surgery yet another hard day for her daddy and I. We had to say yet another set of good-byes and I love yous, but this time we both felt that she was going to do great! After about an hour of getting her ready to take her to surgery the nurses came back to take her back. I got to hold her and walk her all the way to the OR doors. I gave her a big kiss and told her mommy will always be with her and to be strong. After about 6 hours the nurse came out and talked with us explaining that Kaitlyn was having problems keeping her oxygen levels up so they had to put back in her BT shunt with bi directional Glenn and that brought them right back up. As far as we know Dr. Hammel has never performed this type of bi directional Glenn before. So this just goes to show how special our little girl truly is.

She recovered from this surgery quiet quickly with very few complications. She did remain on the breathing tube for about two weeks which can cause problems with keeping her oxygen levels high because you need to be off of the vent with the Glenn operation. But eventually she got better and came off the vent and was breathing very well all on her own. She was in the hospital for almost a month before she got to come back home.

She was home for about a month and it was wonderful. We finally got to talk Kaitlyn out for walks and to see the world, she loved it. Her eyes would get so big when she was outside, it was truly amazing! After about a month we noticed that Kaitlyn was having acid reflex issues really bad and was throwing up quite a bit, so we made an appointment with one of the pediatric surgeons to discus a G button. We decided that it was the best option for Kaitlyn so that next week Kaitlyn was to go in for surgery. This surgery usually last around 3 hours and they usually go home the next day. Well as we all know Kaitlyn has her plans. The surgery went quiet well no complications during surgery and she was put in the PICU for observation that night just because of her history. Well that night Kaitlyn was having problems with keeping her blood pressure down and her heart rate down so they had to start a morphine drip. She was in so much pain that she was showing it in her vital signs. The next day wasn’t any better, Kaitlyn was still in a lot of pain. They said that it was normal and that over time she would feel better.

Well Kaitlyn was put in a private room about a week or so later and she still wasn’t doing so well. She was very swollen and was put on oxygen because she was having difficulties breathing. We later found out that she had a lot of fluid pulling on her lungs and needed to be on an extra dose of lasix for a couple of days. About two days later Kaitlyn was looking a lot better but then she started having difficulties keeping her feeds down. So a couple of days turned in to a couple of weeks, which turned into a month. After a series of trials and errors we finally got Kaitlyn on a good feeding regiment where she was getting the calories and the fluids she needed.

Now she has been home for almost three months and is thriving very well. She is growing and improving everyday! Even tough we don’t know what each day will bring we learned to cherish each day and thank God for blessing us with this beautiful little miracle. She may never be “normal” but that makes her all the more special!!

Provided by Christine Méndez, Narration by Christina Bree

Illustrations by Rafael Vilá