Four Months Later

I've been wanting to write for quite some time now, I just haven't had the courage to do it. I am still broken, shattered, in so many different ways. I feel so guilty for continuing my life without Kennedy, but she is always giving us signs, daily, that she is with us.

The last 4 months have been pretty overwhelming. Trying to wrangle my emotions on the daily, and feeling like a black cloud in every room I walk into has been the toughest of battles. I can't explain the way I feel when I am in a room of people I should be comfortable around, because I am not comfortable. I'm scared of making mistakes, of making others uncomfortable with my presence, or saying something wrong. I often don't have much of a filter, and I have seemed to just blurt out what's on my mind. I do know I am not alone. I do know other mothers who feel the way I do, and do the same thing. I don't mean by any harm or to be snotty, I just do it. Then there's days I really don't want to do anything. I feel like I need days, sometimes back to back days or more, to relax and not feel....or feel, feel everything I feel inside that no one else is aware of. I find myself sitting in the corner of couches not saying much, being awkward, and I'm ok with it. I've been trying to live my life openly and say yes to more things than I normally would. There have been so many situations over the last 4 months that I have been very uncomfortable. I get anxious about social gatherings or parties. I don't enjoy feeling like the cloud that walks into a happy room, so I have avoided a lot of those types of things, unfortunately. I don't think many people understand truly how I feel, unless you're that mom that walks into a room of other parents who know your story. Or are that couple that walk into a room and hear the whispers from others and the awkward sympathy smiles. It's not fun. It's an awful reminder of something I don't want to be unhappy about. It's something I want people to feel comfortable bringing her up. And with the sympathy smiles, it always makes me want to cry. I always give that quivery, uncomfortable,  half smile back. I've also deactivated my Facebook for awhile. And since I've done that, I've felt better about myself. I was so concerned with other people, I needed to stop that and focus on myself. It has been so wonderful. Much more wonderful than I ever expected!

I've never had 4 months go by so slowly. So so so painfully slow. Not that I want it to go by quick. I would go back and relive April 20 over and over and over again. Relive the pain. The hurt. Everything, just to have those moments again, except this time I wouldn't take it for granted. The words of the doctors and nurses. I have flashbacks almost everyday. Sometimes they seem comforting, but other times I just wish they would stop for a few moments. I often see the meeting room we sat in when the doctor told us Kennedy died. The operating room as Kennedy was born, and the feels, the tears, the heavy chest I felt when I heard her little cry. The most painful car ride home. The physical and emotional pain we felt walking out of the hospital for the last time thinking that was it....we spent so many times walking around that hospital to appointments that I was uncomfortable leaving. I didn't want to. That was the only place I had from Kennedy. She was Mott Children's Hospital to us, and we had to leave.

This summer has been not the most of relaxing summers we've had. Even though that was my goal. We really haven't had much time to spend with just the 3 (4 if you include Izzy) of us, as Blaine still has to work, and the weddings we've had, the summer just ran away from us. Lately, I've been job searching myself, still. I've been job searching for the last 3 years, and no one wants to hire me. It just adds a little more frustration to the mix. The past few weeks have been good. I've started to feel a little happier, and feel better about myself. I've been working out daily, which has made me feel the best I've felt since December when we heard Kennedy's diagnosis. I still feel like I am grieving occasionally. I still haven't and I am not sure if I ever will accept the fact that Kennedy is really gone. I will never be okay with the fact she is gone.

I've found a lot of comfort in reading a blog called Scribbles and Crumbs. The mom lost her baby boy, Charlie. Her words resonate so loudly within me, I can literally feel her words going through me when I am reading. They aren't always the happiest of blogs, but they are real. They bring my feelings to life, and often times, that is the hardest part about all of this. I can't explain to people how I am feeling or what I am experiencing. If any of you are interested in reading an amazing blog, I highly suggest reading her blog, even if you don't directly relate.

SCRIBBLES AND CRUMBS BLOG

Carsyn has been so amazing to us along this grieving journey. She's 20 months old now, and we cannot get her to stop talking. She knows who her sister is, and will point out butterflies anywhere we are. She LOVES babies, and it kills me that she doesn't have her baby sister here. She will get the big sister opportunity again in the future, but who knows when that will be. Her love for her dog is unreal. She is always looking for Izzy. She feeds her everything she eats, and Izzy is more than willing to accept the half a granola bar or cheese stick Carsyn offers. They brighten my day and make me thankful for the blessings I do have in life, although I don't always act that way. I do get irritated easily, but Blaine is always there to swoop in and save me.

We ordered Kennedy's headstone last month, so hopefully it will arrive by December. It's humbling to be 25 years old and buying  your headstone for your grave, and it wasn't done because I "wanted" to. I know for a fact I didn't want to have to bury my child, but she gives me something to look forward to. She has had a couple visitors who have left little gifts with her. Thank you so much to whoever you are. Carsyn loves all toys that are left out there. She never wants to leave when we go to visit Kennedy.

I also want to thank everyone for their continued love and support. As much as I wish I didn't need it, I know I do. I need every bit of it. Thank you all, again.





Ana </3

Normality

As normal as my life has seemed to return, it's not....at all. Everyday things are difficult to do. Yesterday, Blaine left for the week for Regionals in Jacksonville. This is the first time he's left for more than just a couple days, let alone the first time I've been away from him for one night since the night of April 18. I haven't cleaned the house or cooked in over a month. I've been so thankful for those who have looked past the mess and have cooked or offered gift cards and money for us. Today, I cleaned the house. I sorted through the many gifts we received and items for Kennedy. To say the least, I couldn't imagine having to sort through items she actually used or belonged to her, but every single item I looked through made me think of her. They brought back feelings of hating how I feel so often. I feel like people look at me and wonder why I still feel this way, then I realize it's been less than two months. Two months isn't enough time to grieve the loss of a child. And I don't think two years is either.

I found the memory box that was given to us at the hospital, which before didn't have much in it besides her little bracelets and a few other small items, one being a little baggy with a few locks of her dark hair, which looks a lot like my own. As I opened the box, inside was a copy of her obituary, a copy of the letter Blaine had wrote to her, and the molds of her little hand and footprints. I stood there for a few minutes longing to get to hold her again. Kiss her cheeks. Just one more minute. One more hour. Just one day.

Being out in public has been very hard for me. I just wish people could see and understand what I've went through. I still have baby weight. I still have postpartum symptoms that makes me feel yucky. It's so difficult for me to get dressed daily. I don't and won't have anything to show for why I look or feel the way I do, besides a scar across my belly that reminds me daily of the blessing I carried for 38 weeks. Every time, that line takes me back to what should have been. I see parents with babies, little girls with siblings, happy families that don't have a worry in the world and I hate it. I hate feeling jealous of people for being happy, for having babies, when I should have been like them. I've held 2 babies since Kennedy, and each time I have just wanted to lose myself in tears and heartbreak. I honestly hated holding them. I didn't enjoy it, at all. I've hated seeing pictures of grandmothers holding their newest grandchild, even though I know Kennedy has been in my mom's arms for 37 days.

My heart is shattered and broken beyond repair, but I have a great bandaid that covers my hurt and holds me together. Without that beautiful girl, my life may have been broken forever.

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

38 Weeks, 2 Days

Well, here we are. It's so hard to believe the time has already come and we get to finally meet our precious Kennedy in the morning. This week has been absolutely crazy. I'm sorry to anyone who has messaged, text, or called me and I didn't answer or haven't responded. Trying to pack all our bags, clean the house, raise a toddler, and still get my naps in has been very time consuming.

Carsyn and I arrived yesterday afternoon to Ann Arbor. We stopped at the outlet mall on the way and did a little shopping, then we checked into our hotel and went to dinner with Blake and Jolene. We then waited to pick Blaine up from the airport, as he was flying in to Ypsilanti from his meet in Virginia. He didn't get in until almost 1:00am, but it was nice to be able to see him right off the plane. Of course, it was a long night trying to get Carsyn back to sleep.

Today, we weren't sure what to do. We wanted to go to the zoo, but Carsyn was pretty grumpy already from the day and night before, and it was supposed to rain in the afternoon. Instead, we went to Cabela's and met Blaine's parents there after I got my pre-op blood work done at the hospital. It was basically like going to the zoo or aquarium! Carsyn got to see all the animals and fish, and she did not want to leave. We could have been there all day chasing her around from animal display to animal display. For the first time all pregnancy, my ankles swelled. Once we left, we came back to Ann Arbor and took a nap. We then enjoyed a nice dinner with our parents and Blake and Jo. Carsyn is now off with Grandma and Grandpa Maag, definitely a bittersweet moment. Hard to believe she will be a big sister, and we will be parents of two beautiful girls.

There are SO many different emotions flowing through my mind. As excited I am to finally meet Miss Kennedy, I am equally as scared. It's so hard to admit, but I am terrified. I don't know how her health will be when she arrives and I don't know so many other factors regarding her in general. When people say to me, "You must be so excited to meet her finally." I think to myself, I am, yes, of course. But in another way I wish she could just stay where she is, where I know she is safe and protected. God has a plan, and we will see what that is. He's brought her this far for a reason, and I pray he continues to work his miracles through the doctors, surgeons, and nurses. There have been so many times I have cried and wondered why these things are put on babies, children, and innocent animals. It's amazing all the kids that are living well and living 'normal' lives that have the same defects Kennedy has. However, every journey is different. Some have had to fight harder than others, and some have been blessed with a smoother fight. There is no timeline or time telling how long we could be in the hospital, how long she could be on ______ medications, or on her feeding tube. We don't know any of that. We have been living this journey day by day, and we will continue to do so from here on out. We will keep fighting no matter what happens along our journey. We will fight for those babies that will be diagnosed with these CHDs in the future, for those that are living with them today, and for those that have lost their battle with CHDs. Like I said, every journey is different. I am so confident in today's medicine and our doctors, and first and foremost, Kennedy. Don't get me wrong, I have loved Carsyn from the moment I knew I was pregnant. But no one understands the love a Mommy has for her heart baby, unless you are one. You love all your children all the same, but with a sick baby, it's a completely different love.

We are off to the hospital in the morning around 6:00. Surgery is scheduled for 7:30. We will update everyone as soon as we possibly can. Most updates will be posted to our Facebook group (link below) and as I come to it, I will continue updating the blog. If you are interested in the most up to date information we highly suggest joining our group. Please pray for us all tomorrow, and most importantly, Kennedy. She is so loved already.

FACEBOOK GROUP: KENNEDY'S FIGHT


I would like to share a short timeline of our journey and their significance....

December 8 -- In 2001, my maternal Grandfather passed away unexpectedly. On this day in 2014, we found out Kennedy had a heart defect. At that point the significance was unknown.

January 7 -- My mom's birthday. As most know, she passed away unexpectedly and pretty suddenly in 2008. On this day in 2015, we found out Kennedy's heart defect was much more than we expected. She had HLHS.

February 5 --  My oldest brother's birthday. The doctors confirmed Kennedy's intact atrial septum, and scheduled fetal intervention for February 24.

April 20 -- My mom's brother's (Gary) birthday. My uncle is kind enough to share his birthday with the birth of his great niece. Happy Birthday, Tito Lolo Gary!

Although, these dates may not seem very significant to others, they are all very special to me, and most certainly will never be forgotten.

37 Weeks

I cannot believe how fast the last week has gone. The weeks waiting for 36 weeks seemed to take forever, simply because it was crucial to make it there. Now we are nearly one week away from delivery day! Just 10 short days away.

Last week, the team had a comprehensive meeting about delivering Kennedy, finalizing all the details. Yesterday, we had an ultrasound and a fetal echo. The ascites in her belly has remained the same, and the doctor said the edema under her scalp has seemed to go down a bit! Such amazing news. Praise the Lord! With all that being said, yesterday was our last set of appointments before April 20.

The day of delivery is obviously going to be pretty hectic. We are the first scheduled appointment, scheduled for 7:30AM. We will have to arrive at the hospital around 6AM to get me prepped for surgery. Instead of delivering me on the woman's floor where they typically deliver babies, we will be delivering on the general surgery floor in the OR next to our surgeon's (Dr. Ohye) OR. Blaine will not be with me for my epidural, as they will be prepping him to meet us in the OR for delivery. I am so happy and grateful he will be able to be there with us and get to see his baby girl. Once Kennedy is delivered, she will get cleaned up, vitals taken, baptized, pictures taken, and prepped to head over to the next OR for her septostomy. Blaine and I will be returning to recovery and they will be keeping him updated. Once I can be moved into my postpartum room and Kennedy is out of surgery, I am hoping I will be able to go up and see her ASAP.

These last few weeks have been pretty stressful in themselves, let alone this next week and a half. I still feel like I have gotten nothing done, besides trying to keep the house decently picked up. Sleep at night isn't easy, and I still have to pack our bags!!! Yikes. Thankfully, I still feel great, besides my sore hips and lack of sleep for the most part. No signs of labor yet. And I at least have my lists written out for what I need to pack for Carsyn and I. My dad is coming this weekend and will be taking Izzy back to Ohio with him, until we are ready for her to come back home. Every time I think of her leaving, I get teary eyed and slightly upset. It's always been difficult for me to leave her. The longest she's been gone has been 2 weeks. I don't even know the next time I will see her, and Carsyn has been all about her dog lately, which really breaks my heart. When Izzy isn't visible to her, she always asks, "Where's Izzy?" She says Izzy better than she says anything else. At least I know Izzy will be taken care of, I just hope she doesn't forget me! ;)

As we all prepare for these final days before our lives really take on a big change, I have started a group on Facebook (link is posted at the end) for all those who would like to follow. I will continue to update the blog, as it is very therapeutic for me to write about my thoughts and feelings, but on the group it will be easier to post updates and pictures and for people to contact us. Please understand that we have begun these things (blog and group) to try and update all our friends and families as easily as possible for us. We love hearing from everyone, but trying to text, call, and message each individual back can be overwhelming. So if we don't directly respond to you, do not take it personally! We still enjoy hearing from you all! :)

God bless,

The Maag Family

Photo courtesy of A Stitch in Time Photography

Big sister laying with little sister's blanket.

Photo courtesy of A Stitch in Time Photography

Please keep sharing our fundraising page, as our journey is just beginning.

Facebook page

36 Weeks

With a big sigh of relief, we are so happy that we have made it to full term. If Kennedy decides to make her appearance before April 20, they will do what they can. On the other hand, as time is quickly winding down, there seems to be endless things to do. As there always seems to be an endless list of things to do before having a baby, I feel like my list seems twice as long this time around as we won't be home in a few days after delivery. Trying to set up arrangements to get the dog home to Ohio with my dad (even though it will break my heart to see her go, and I will cry like a little baby), packing bags for Blaine, Carsyn, and I and not knowing how much to pack, getting last minute baby items that we will need, etc. my list seems to just go on and on and on. It's kind of overwhelming when all I want to do is sleep, as I haven't been sleeping well with the combination of being uncomfortable and my racing mind. Carsyn has been sick this past week, and thankfully my aunt, uncle, and little cousins were visiting this week over their spring break, and they were beyond a HUGE help and allowing me to nap for 2+ hours almost everyday.

Our doctors appointments haven't been anything dramatic, as of late, praise God. Nothing much has changed in regards to the ascites (fluid in her abdomen), but her heart is still pumping strong and her biophysical profile looks great. As the stress from the appointments has been minimal, with time ticking down so quickly, we have been getting pretty emotional. Our emotions seem to be running wild and are going in every direction. I absolutely cannot wait to see her, but on the other hand I am so scared, nervous, and anxious. I know things will be hard and this is going to be a lifelong journey, but I guess you never know the circumstances until you are in the moment. I hate this feeling, but it's extremely difficult seeing all our friends having adorable, happy, and healthy babies, along with happy families with their new bundles of joy. I feel so selfish and jealous, but I feel like it's not something I can control. I don't know when I will even be able to hold Kennedy, or what her health will be like when she arrives, besides being already very, very sick. Don't get me wrong, I am so incredibly happy for all those people, I just wish I could join them in that realm.

Blaine will be traveling to Louisville, KY next weekend and Virginia the following weekend for track meets. And in 17 short days, Kennedy is scheduled to arrive. Please continue to pray for us as this journey is just beginning.

The pictures below were taken by Amie of A Stitch in Time Photography from Haslett, MI. Thank you to Blaine's athletes for this amazing gift, and an even bigger thank you to Amie for donating her time and sessions to us to help capture some beautiful photos along this difficult journey.

Going home..

It's definitely been a tough and trying few days. The doctors are still stumped and don't know where the fluid is coming from. I have been on a medication to help her heart pump a little stronger to see if it helps lower the fluids, however, it's such a slow process it could take some time still. The doctor came in today and ran a quick ultrasound. Since it's such a slow process, she can't really tell if the fluid has gotten better or worse. She was reassured that it is continuing to stay away from the heart and lungs, and that there weren't any drastic changes in the current fluid just from seeing with the naked eye. The MFM team discussed and agreed upon us going home for the night to be with Carsyn and get to sleep in our own bed. Maybe it would be a little less stressful on me, and in turn help Kennedy. I am continuing my medication, and we have an ultrasound scheduled for tomorrow, Monday, March 16, back in Ann Arbor. We also then have another appointment in Ann Arbor scheduled for Wednesday, March 18, where we will reevaluate again, and also meet with the surgeon that will be working on Kennedy.

We are praying the fluid level stays the same or gets better, and pray it stays away from her heart and lungs. I am pretty nervous being home now, but I am so happy to be with my girls for the night and day.  I'm hoping I can relax a little bit and get some better rest than I have been in the hospital.

Thank you all for your loving prayers and support.