Monday, April 20, 2015

I've been trying to muster up words for the past two weeks to even try to express my thoughts and feelings. There have been so many things I want to explain, but for the first time in this journey I haven't been able to find the words to write. I would like to thank everyone for expressing their condolences to us. Things obviously have not been easy, but through everyone's love and support it has really helped get us through those toughest times. Also, thank you to the nurses, doctors, social workers, everyone who helped care for our precious Kennedy and I. The jobs people like you do are not easy. I have the utmost respect for all of you, any of you that work jobs like these. Thank you for saving lives.

Sunday night, the night before Kennedy was born, was the worst nights sleep I've ever experienced. I only got a couple of short hours of sleep, all of which I'm not sure I was even sleeping. The morning (5 am) came very quick, and before I knew it we were walking into the hospital. Everything was different. People were expecting us, knew our story, and knew who we were. Our delivery nurse was the same nurse we had during fetal intervention, which really eased my nerves. We had a private pre-op room on the women's floor. So many people were coming in and out in the hour and a half we were there. Doctors, nurses, and surgeons, they all knew where we were. We then were taken downstairs to the general surgical floor where Kennedy would be delivered and operated on. On our way through the halls, the heart surgeon was waiting for us, he waited around the corner until I had passed, then walked behind with Blaine. The moment I saw him my heart dropped and my eyes welled with tears. Things were happening. He gave me so much comfort, but there is never enough comfort when you have to place your child into someone else's hands for surgery. We met with the anesthesiologists in a pre-op room, then they took me back to the operating room, leaving Blaine behind with the Chaplin who would be baptizing Kennedy.

Just arrived at the hospital.

Meeting the anesthesiologists

Operating room 15. The room to the left of it, operating room 17. Upon arriving into OR 15, it was already filled with nurses and people awaiting our arrival, once again. Things were moving very quickly. The room was cold and big. The operating table was very skinny and hard. A lot of things I expected in an OR, just never expected to be experiencing it in this way. There were multiple people maneuvering me around the table to get me positioned correctly before giving me my spinal tap. Sitting upright on an operating table, hugging a pillow, awkwardly trying to sit a certain way getting a large needle shoved into my back was not comfortable. My hands began shaking, then my legs, and my body, along with a chattering jaw. I'm not sure if I was necessarily shaking because I was cold, I had a warm blanket on, or scared. Scared for my baby and what was to come of all this. So many people are trying to talk to me and asking questions, there were pops and zings going up my spine, and I am still terrified. Things seemed to be moving in slow motion, but everything around me also seemed to be moving in hyper speed. They asked me to lie down and almost instantly my toes were numb. The lights were very bright, people were working on both sides of me and someone was standing at my head doing other things. The delivery nurse went through her call, and everyone else went around the room, stated their name and their job. Next thing I know, the drape is up and they are calling down for Blaine to come. It was quite a walk, so it took him a few minutes to arrive. Within that time, the anesthesiologist asked if I felt any sharp pinches or pain, I said no, then a minute or two later she asked again, and as before, nothing.

Kennedy's nurses waiting for her

I began to feel nauseous. I turned my head to the right and she grabbed a kidney bowl and an alcohol swab and waved it in front of my nose. Blaine finally arrived, and apparently the doctor had already started my incision. I was extremely nauseous. I couldn't move my head, I was too scared. I just lay there with my eyes closed breathing in my nose and out my mouth praying to God Kennedy would be ok. That she would come out and cry, at least once. One of my biggest fears was that I would never hear her cry because she would be that sick. The anesthesiologist told me each time if I were going to feel pressure, and when Kennedy arrived and took her first breath, I felt like the doctor put as much of his body weight on my stomach as he could, which took my breath away. She let out a few good cries, and instantly my life changed. Blaine kept telling me how beautiful and perfect she was. My heart was broken all at once . The first time I would be able to see her she wouldn't be perfect anymore. She would have an incision as long as her chest, and would be on tubes and medicine....the things no one wants to see on anyone no matter who it is. Kennedy's heart surgeon came in and talked to me as the nurses were prepping her. Blaine got to oversee Kennedy's baptism, then she was out the door to OR 17. Blaine came and sat back down by me as the OBs were closing my belly, showing me pictures of our beautiful girl. I don't recall many details once Kennedy was taken out of the room. I was exhausted. I could barely keep my eyes open in recovery. Blaine and I just sat in the dark room with my eyes heavy trying to wake up enough for when people came in to the room. Each time I fell asleep, my pulse ox would go down, and the nurse would have to come in and wake me up so it would go back up to a normal number. At that point I just wanted to sleep until I could see my girl. I know Blaine told me the cardiologist called Kennedy a rockstar after she was born. The nurse that was giving us updates came in pretty quick and said Kennedy was put on bypass within 45 minutes after birth and she would be back once she heard more details from surgery. Blaine left recovery for a little while to go see his brother who was waiting downstairs, and to allow me a little time to rest. Not too much later, the nurse came back and said surgery was done. She was surprised at how fast it went and the doctor would be up shortly to speak with us.

Right after birth

The cardiologists looking at her heart via ultrasound

Prepping Kennedy for surgery

Kennedy's heart surgeon (Dr. Ohye) talking to me before he left for her surgery 

Kennedy leaving for surgery

Waiting for the doctors to finish closing my belly

She did great. They were very happy with how things went and she was on her way up to the CTICU. The doctor tried putting pulmonary bands on after he removed the septum, but she didn't respond well, so he took them back off and they would wait until Thursday, when her next surgery was scheduled to determine what surgery they would perform. He said we would be able to go up and see her in about an hour. The clock was ticking. Our delivery nurse wanted to get me moved to my postpartum room so I could go see her as soon as I could. I got a kick start to my recovery the moment the doctor said we could go see her. I felt ok. I was just really tired and hungry. They got us moved to our room around the hour mark, and Blaine asked if we could go see her. As much as I wanted to, I got pretty nauseous and hot from moving beds, so I decided to just wait a little longer so I could eat a little something. He went up there and began observing around the multiple nurses and doctors that were monitoring her minute by minute. I knew our families were there waiting at the hospital, so I decided I was ready to go up and see her. We arrived upstairs to her bay, and the first time I got to see her I broke. I was broken. Such a strong little girl already, has had more in her short life than I have in my short 25 years. I couldn't and wouldn't stand to walk to her bedside. I didn't think I could stand up without falling over I felt so weak and helpless in the moment.

Kennedy before surgery

Kennedy after surgery

First time meeting Kennedy

<3 <3 <3

I got back down to my room and had Blaine go get our families. I needed to see Carsyn. Everyone came up to my room, and Blaine took everyone 2 by 2 upstairs to see Kennedy. I wish I could have been there with her. Everyone hung around until right around dinner time then headed their separate ways for the night. I ordered my dinner and Blaine went back upstairs with Kennedy. Throughout the afternoon, he would text me updates. I was still extremely woozy and out of it, so I couldn't quite comprehend very much of what he was telling me. They put her on paralytics, because any little touch or irritation dropped her stats. She was on 9 different medications for so many different reasons. I ate my dinner and had Blaine come get me. We went downstairs to get Blaine some dinner then headed back upstairs to spend the evening with our baby girl.

Blaine got me settled into the recliner, while he sat and watched the Tigers. The shifts were changing, so new people were coming in and out of her bay constantly, even though I didn't notice them much because I couldn't keep my eyes open. We weren't upstairs very long when the new cardiologist came and spoke with us. He said he talked to the cardiologist that was on previous, re-evaluated Kennedy himself, and called the heart surgeon. They said her chest wasn't moving the way they wanted it to and her ventilator was turned up as high as it could go. They decided they needed to open up her chest to try and give her lungs some room to expand. We had to leave so they could do that, so we went back down to our room right around 8:00 pm to wait for someone to come update us..............



My heart wants to burst even thinking about this moment. It makes me sick, mad, and angry all over again.

A social worker came down to our room and said the doctors asked us to come upstairs because Kennedy was declining. I wanted to throw up. I got out of bed and hugged Blaine and lost it. I was so scared. What was wrong, and what was happening. I thought she was doing well. I knew things were a little shaky, but they called her a rockstar this morning. They said she was awesome. Why is this happening. Blaine basically ran through the halls pushing my wheelchair. We turned a corner and saw a nurse turn around then run back to the ICU, and when we reached the doors another nurse asked us to go to a consultation room. We got into the room and had to wait...the 5 minutes we sat there felt like an hour. The doctor came in and sat down in front of us. The look on his face.....I could feel it in my throat. In my chest. "This is something I never want to have to tell a parent. Kennedy didn't make it."

I can't even begin to write about how I felt in the moment or what it was even like. It is something I would never wish upon anyone to have to feel. Helpless. Cheated. Mad. Angry. I could go on and on. I didn't initially blame anyone or anything. All I wanted was to hold my baby. 12 hours. 12 hours and 7 minutes she lived. She fought so hard, and still came out on top. Painless, with a full heart, and healthy lungs.....but how? Why? So many questions that I didn't have then, but would later.

Coming into this day, we knew she was sick. They let us know she would be one of the most sick kids in the hospital, which is why she was so many peoples number one priority. The smiles after she was born from all the doctors, surgeons, and nurses gave us so much hope. Life. And it was all torn away. I don't even know if I got to say bye. I know I wish I would have spent more time with her. Or told her I loved her one more time, even though I could have sat there and said I love you repeatedly and it still wouldn't have been enough. I wish things would have gone differently, but they didn't. Everyone knew she had half a heart. And the doctors were trying to help her by giving her lungs relief. They opened her chest and her lungs weren't moving the way they wanted them to. They were stiff looking and not expanding and contracting the way they needed them to. They then decided to try and drain some of the fluid in her abdomen by opening up her abdominal wall and to give her lungs even more room to expand. The fluid started flooding out, and in a split second she was gone. They did everything they could to revive her. They shocked her heart twice, palpated her heart by hand to try and get it to start again...it was just too weak. Her heart was a half and weak, her lungs were even more sick, we just didn't know it. The smallest thing could have pushed her over the edge. Draining the fluid could have caused her heart to fail by not allowing enough blood to pump through it, but we won't know for sure.

The heart and lungs go hand in hand. The intact atrial septum caused so much pressure damage to the vessels in the lungs that they were stiff and weak. If she survived, she was so sick she probably wouldn't have been a candidate for the Norwood procedure. She would have been a good candidate for a heart transplant, but would have probably needed a lung transplant also. If she would have had a heart transplant, her lungs would have been too sick for her to survive, and if she had a lung transplant, her heart would have been to weak and would have failed. Ultimately, her lungs failed her, and her heart wasn't physically whole. Fetal intervention, if it were successful, could have saved her life. I would choose it a thousand times over just to give her one more fighting chance.

As much as I want her here, and wish I could have had more time, I am happy knowing she won't have to worry about her future or if she will live to be ____ years old. She won't have to experience the hurt and heartache that comes along with an individual's life, no matter who you are. It's selfish of me to want her here. Some days I feel wrong for putting her through this, but I know she has made me stronger, and has given me what I needed in my life to love big and take chances, and that is the exact reason God placed her in our lives.

I could have held her all night that night. Through my swollen, blurry eyes, to me she was sleeping. Sleeping babies are always perfect and she was perfect. Perfectly beautiful. It hurts not knowing what her eyes ever looked like, what her smile was to be, her personality, her love for life, and the love she would have gotten from her big sister. The hours we were with her were not enough. They will never be enough. Until eternity arrives, it will never be enough.

I love you.

Blaine and I, for the next 3 days lay side by side in my hospital bed......for people who don't know me, I like my space. I needed him, and I still need him. Everyday going through the aches and pains of having a baby, but not having a baby, hurts. It more than hurts. Physically and emotionally. It's not fair, and it sucks. Hearing the cries in the hallways of newborn babies makes your heart hurt. Seeing all the Mom's with healthy pregnancies hurts. Seeing families with siblings how ours could have, should have, and would have been hurts. Losing your child sucks. We stayed in our room for the most part, barely ever leaving until I could be discharged. We did go downstairs for dinner Tuesday night, but I felt like a sore thumb. Even though I finally put on normal clothes, and walked downstairs myself, I felt like people were staring at my swollen eyes wondering why I was in the hospital like that. I didn't and don't feel normal. I feel hurt and robbed of a life that could have been. I never wanted to think of having to plan my child's funeral. Of where to bury her, what to dress her in, what type of services to have, or what type of casket to buy. Baby caskets are hard to come by. They aren't popular, and they should never have to be used. Babies should never have to be put into a casket. Plain and simple. I was ready for the life I was about to embark on. I was ready for what I was going to have to sacrifice to give her the best life I could give her, and it was all taken from me.

The past two weeks have been the worst. I say that because it's true. They have been awful. We got many visits from all our nurses and doctors that we had seen more often than our own families the past 5 months. They became family to us, so each visit was tough. Wednesday they allowed me to get discharged and said I could leave whenever I wanted to. All I wanted was to get out of there as fast as I could. When the moment came to leave, I didn't want to. I didn't want to leave the only place I had with Kennedy, even though she was no longer there herself. I felt guilty for leaving, like I was trying to move on without her. I still feel that way daily. I don't want to move on without her. I don't want to move on in general. I automatically carry her wherever I go, but I don't feel that way. We went straight to Blaine's parent's house in Ohio. That evening, we went to the funeral home. I hate the way funeral homes smell of flowers. I've hated it since my mom died. No matter where I go, if I get that smell of flowers, it makes me sick to my stomach every time. Picking out a casket for something so innocent isn't easy. Seeing a casket so small is even harder. 24 inches long on the inside. That's all the bigger it was......

The few days following getting discharged were physically and emotionally challenging. Thursday, we had to go shopping for funeral clothes. I didn't have any dress clothes, so I had to go shopping. I walked through Kohl's slowly and depressingly. I wasn't happy. I didn't want to be shopping for funeral clothes when I was miserable. I had to try on all the clothes by myself, which I hadn't gotten dressed without help in days. It was painful and my ankles and legs felt like they weighed 500 lbs...probably because they were so swollen. I didn't even put my shoes on. I walked through the store pushing a wheelchair in my socks. Blaine had to put the shoes on my swollen feet to try on, and help me up off the benches after I sat down. Each day I took a 3+ hour nap. I never really got too sore, but when I did I realized I hadn't taken my medicine for a long time. The physical pain was so much easier to handle than the emotional pain. But when they combined at the same time, there was no holding back.

The weekend services began on Saturday, we got to see Kennedy Saturday afternoon, and she was beautiful. Too perfect to be broken inside and to have gone so wrong. The pain of having to bury anyone is undeniable. Having to say goodbye will always leave you broken. I never imagined at the age of 25 I would have had to experience this so much, let alone one of them being my own child. The days since then have been numbing. The past almost 7 years I hated feeling the way I felt losing my mom. I was bitter and didn't feel like a lot of the world didn't understand how I felt. It kills me knowing how much Blaine hurts. I never wanted him to know what I felt like for 7 years. He knew I hurt, but how much, and now he knows, except so much more. As they say, the love for your own child is unlike any other.

Viewing at the church

Kennedy has a beautiful view from where she was laid to rest. The blue skies and the flat, Ohio fields...you can't beat it. Blaine and I will be happy when our time comes. Being reunited with our 8 lb 2 oz heart warrior princess. It's humbling being 25 years old and knowing where you will be laid to rest, but comforting knowing you will be surrounded by loved ones.

Yesterday was 2 weeks from her birth. I finally took my steri strips off my incision. Removing each strip of tape was difficult, more emotionally than physically. As my physical wounds are healing and scarring, my emotional wounds are still wide open. Kennedy touched so many more lives than just our families than we can even imagine to know about in her short 12 hours and 7 minutes of life. I was beyond blessed to carry her for 38 weeks and 2 days and feel her at her strongest moments. The pain of losing something so precious is heartbreaking. Right now, I'm not focused on moving on. I'm focused on being the best wife and mom I can be to my two humans here, thanks to my angel in Heaven...but first I think I will take my naps and let housework and cooking slide until I get around to doing it all. I will continue to love big and take chances, and most importantly live without regrets from those chances, no matter the outcome. I will never regret giving my child a chance. I would take what I had a million times over and over again.

If you have babies or children, please love them extra. Never take for granted the life and love you have in front of you, and never ask for them to grow up too fast. Love big, take chances, and live your life to the fullest. Please do it for Kennedy. We love each and everyone of you for all you have done for us, even if it has just been reading our story. That's all we wanted was to inspire and impact lives. Support CHDs and know the importance of pulse ox testing with newborns, it could save your baby. Be an organ donor, you could change a families life...it could have been ours.

Although this will probably be my last post for a little while, I don't plan on stopping......

Kennedy Gayle Maag

April 20, 2015 8:36 am - April 20, 2015 8:43 pm

Kennedy, my sweet baby girl. I love you beyond infinity. I will always love you and rejoice in the life you gave us, even though it was short. You have opened my eyes to so many things, and brought so many amazing people into my life. I can't wait to tell your siblings about their angel, and teach them and show them how to love unconditionally and fully. My heart will always be broken and ache until we meet again. Keep watch over your Daddy and sisters (Carsyn and Izzy). Thank you for helping me love them more than I could have before you. Show your Lola how much I love her and let her know I miss her. I'm glad she was there to carry you home. Rest in Paradise my precious girl. I love you so, so, so much. Until we meet again.

Photo by {A} Stitch in Time Photography

Photo by {A} Stitch in Time Photography

Photo by {A} Stitch in Time Photography