Building a bond

A bond between two people is a very tender and vulnerable experience. It is where walls are broken down and raw emotions are shared without fear, instead excitement and love. I woud like to say that my bond with emmalynn was instant but it wasnt. My love for her was instant and my protection over her was instant, but the bond shared between mother and daughter was delayed. Maybe because she was taken from me so soon after she was born. Maybe because I was overcome by other emotions that I couldnt even focus on building my bond with her. Most likely it was my overwhelming fear of hurting her and, in all honesty, of actually having the real possibility of touching her wrong and killing her. Our situation was so intense that it took a while for me to feel confident as a mother and to allow myself to not be afraid of making mistakes. I remember the first diaper I changed, I lifted her the wrong way and it made her breathing tube dislodge and she started to crash. Can you imagine the fear of taking care of her? How was I supposed to be her mom when I couldnt even touch her without an alarm going off telling me I was doing it wrong? Well thank God for putting angels in Arkansas Children’s Hospital to help allow my bond to build. I remember the day it happened. The love that oozed out of me from that moment on is nothing short of a blessing.

Rules were distinct and endless in the NICU. Don’t touch this. Don’t look here. Don’t be there. So obviously, as new parents already afraid of the circumstances, we were very aware of the rules and tried our best to follow them. Because things seemed so strict, I never even considered the possibility of making Emmalynn’s pod (the unit she stayed in) her own. One night while I was standing by Emmalynn’s bed, one of the soon to be primary nurses Miranda asked me if I had any sheets to put on her bed. I looked at her in awe like “are we pulling a super sneak attack and playing dumb like we don’t know that we only can use the plain white sheets that feel like sand paper?” I said no I didn’t know that was an option. She laughed and said this is your baby, you can do whatever you want. Imagine trumpets blaring from the gates of Heaven and my reality setting in. This is still my baby. We are in a less than ideal situation but this is still my baby and by gosh she is not a plain white sheet kind of girl. After that day, I don’t think anything that touched her was plain white if it was not mandatory. She also helped me put on Emmalynn’s first bow. And if you look through her pictures, Emmalynn rarely had a naked head. Miranda gave me the gift of starting to find Emmalynn’s style and starting to build my bond as a mother taking care of her child.

After two weeks of ups and downs and still not having the chance to hold my little girl, Dr Lyle and Jesse decided that us holding Emmalynn might be just what she needed to help her heal. In that moment, I was able to feel her in my arms, cradle her like I had always imagined, and watch as her daddy, so big and strong, softly embrace her like any other father would hold his daughter. In this moment, the reality of our family growing stronger and the bonds developed were iron clad. Not just mother and daughter but my bond with my husband as parents. As we continued to watch how the nurses and doctors handled Emmalynn, and our natural instinct kicked in, our ability to care for Emmalynn soon was easy. Dr. Lyle gave us confidence to physically handle our baby as if the machines were imaginary.

Shannon, Emmalynn’s nurse from the first night that we had throughout her journey, was the first to ask me about painting her nails. I was in shock. I could paint her nails!! Of course I want to paint her nails. Mani/Pedi day with my girl? That is every mother’s dream day! After about a month, we were allowed to dress Emmalynn and her daddy put on her first outfit. This was the beginning of styling sessions each morning, either by a group of nurses going through her outfits and voting on the best, or by me standing over her drawers making sure she was dressed to impress her boyfriend Dr Lyle. This little girl was dressed better than me on even my best day. I wanted her to experience everything every other little girl experienced. By giving her everything I could she was giving me everything I could ever ask for. We even tried tummy time which is supposedly the most comfortable position for babies, babies who have been moved around and molded correctly. Poor Emmalynn was not able to turn her head so her tummy time was face flat in the mattress time. Even though she was not able to do it for long, she even had tummy time on my chest and I got to kind of feel her face nuzzled in my neck. I got to where I would prepare to hold her for 3 to 4 hours. (we could only get her up once a day and I was going to make it last) I would eat, go to the bathroom, and strategically place my drink, phone, and blanket next to me so that nothing could interrupt our mother daughter time. My heart was hers and no one and nothing could come between that…not even restroom breaks haha.

Emmalynn even had a best friend and had her one and only picture with another baby made with her. Claire was another baby we met while at children’s hospital and she also had trisomy 18. We were blessed to meet her and her parents Lauren and Kyle through passing in our pod. Derek and I walked by her each day we wanted to meet them through curiosity because they looked a lot like each other and when I say looked like each other, I mean they both had rockin style and natural beauty of course. When we first met, we had no idea the kind of bond we would hold. This family soon became our family. We shared each milestone together. Each week birthday we would celebrate together. Our dinners were family affairs on the patio. The first poopy diaper was shared through our glass wall divider met with shrills of genuine joy for each other because it was a beautiful gift we were waiting to uncover in those stinky diapers. To this day, I still talk with Claire’s mom and find comfort knowing that our babies are playing together in the presence of our Lord. All of this must sound so trivial but when you are placed in a situation with a medically fragile child, even these small things are huge occurrences that dont come naturally because we are in an unnatural circumstance. Yes I know how to put an outfit and a bow on a baby. I have changed diapers and painted nails and toenails many times but this was so different! It was like riding a bike for the first time, terrifying when the security of our parents' hand was taken off the seat but the best feeling in the world when we realized we could handle it on our own.

Our time at the hospital showed me how to be a mom, how to love someone unconditionally and allow myself to let people in completely, and even more, it showed me how your actions can change the course of someone’s day and provide support and comfort without knowing it. Our nurses Miranda, Shannon, Stephanie, lisa, amber, Ashley, Lindsey, Molly, Jesse, Mike, Erin, and of course Dr Lyle provided encouragement with simply showing faith in our ability to be parents despite the machines. Despite the medical conditions. Their faith in our ability helped to create the courage I needed to let myself be her mom and to let our bond grow. That is a gift that nurses give every day and get little to no recognition for. I can never thank them enough for their support. My bond with my daughter is stronger than I could ever imagine even after she left us. I now have a perfect angel holding part of my heart in heaven.

Feelings unknown

I think every one of us has experienced an intense situation. One where you look back and think "I can't believe we made it through this" type of experience. And after it is all said and done, you finally get the release of all the emotions you were holding onto that come on like a flood. You can imagine that while we were in the hospital we had every emotion possible It was hard enough getting the shocking news that she had trisomy 18 and dealing with the fact that we were unable to, as parents, fix the problem that our little girl was faced with, but when we found out she had a fused trachea and esophagus and had to have surgery to fix it, we had a whole new battle to face.

Emmalynn was only born at 3 pounds and from the start, we were told that she had to have surgery to fix this problem which was causing a multitude of her other problems, but she could not have surgery until she was 5 pounds. 2 pounds doesn't sound like it would be a big deal at all. Pump her full of milk and lets get this party started right? WRONG! We went through trials and tribulations for 8 weeks waiting for this little girl to gain that 2 pounds. Emmalynn fought with her breathing tube and crashed a couple of times the first couple of weeks due to her tube getting pulled out just enough to stop working for her so on top of trying to get her feeds up and get her to gain weight, we were just trying to get this wiggle worm to keep her breathing tube in. One day her lolli commented on how big she was getting and my motherly instinct kicked in and I knew something was wrong. After 2 weeks and closing in on 4 pounds Emmalynn gets an infection, which to this day we have no idea what kind of infection she had, and it sets us back almost 6 weeks. She gained a pound of fluid over night. The team was stumped and it caused the doctors to pull every trick out of their knowledge hats to try to get this fluid off.

With every diaper, we either celebrated from finding a heavy diaper or we worried from it being too dry. Seeing our poor little girl go through such hardship slowly broke my heart but I kept on praying and I kept on believing that our little girl was going to make it through this. She made it this far despite what the doctors thought...she's a spitfire just like her daddy so she was going to kick this too :)

The doctors tried so many different things that I couldn't begin to list it all out. I even emailed some friends of mine in medical school to see if I could give the doctors suggestions but nothing was working. Dr. Marotti even told me I needed to prepare for the worst. Nope it wasn't her time and I knew it so I didn't prepare for anything but success and success we finally found in Dr. Arrington. The man who has saved our babies lives for 30 years figured it out. Double lasik 2 times a day finally did the trick and our little one was ready for her big day. We finally got the date for our surgery and we had our prayer warriors at work to get us prepared. Our family took off work to be at the hospital for the biggest, scariest day we have every experienced to provide us support and be there for little E.

Despite my faith and pure exhaustion from being at the hospital, I could not sleep a wink the night before her big day. I stayed up all night just watching my little girl and thinking about the things that this surgery meant. It meant that our little girl could finally be able to get some relief from the air pressure built up in her stomach. This meant that she would be able to start the journey towards healing and making it home. And most of all, it meant me and her daddy could hold her without fear that we were going to cause her to crash and inflict pain on her because of our selfish want to be near her. Think about if you were going to be going into surgery the next day...I know that I would be scared and restless and probably not the happiest person in the world. Not our baby. No our angel was happier than I think I had seen her to date. She was smiling and playing around all night. In a time that I am supposed to be strong and comforting her, she was providing me strength through her strength. It felt like she was looking and me and saying "mom its going to be ok. I got this".

(night before surgery)

God showed me His over abundance of peace through these eyes. The next morning we got up bright and early and got ready for the long wait. The surgeons came in and got us prepared once again on what to expect. He said it would be at least 3 hours until he would be done and they would come talk to us when it was over in the waiting room. Derek and I walked her to her surgery prep room and kissed her goodbye. Talk about the hardest moment since the day she first left for children's hospital. I hadn't left her side before this and all I wanted to do is hop on that bed with her and hold her during surgery. The doctor said no so I went ahead and held tight to Derek and walked to the waiting room. Our family was there with us waiting for the good news. We watched as doctor's came out and talked to parents in the waiting room to give them updates and also seeing families go back to a private room where they were receiving what we thought was horrible news. One blessing I received while waiting was I got to finally meet another mommy, Jill, who's beautiful daughter Ellie has trisomy 18. Her little girl is 8 years old and was having back surgery the same day Emmalynn was having surgery. Just talking to her gave me some hope for our future. So after talking for a little bit I went back to sitting patiently waiting on the doctor.

Ok truth...anyone who knows me knows it wasn't patiently haha. I asked the front desk at least 20 times if they knew anything but they kept answering the same way...no. After an hour and a half I walked back up towards the desk to ask them for another update when an individual called for Emmalynn's parents. Derek and I ran up to the man and he said the doctor wanted to talk to us by ourselves in the consultation room. Immediate panic set in. All the other doctors were coming out to the waiting room to talk to families, why was he taking us to a private room? Emmalynn wasn't supposed to be done for 3 hours and it had been half that time. What did this mean? Is our baby girl ok? I asked the man why he was taking us to a room and he said the doctor wanted to talk to us in private. My spirit sank. Thank goodness my husband was holding me because if not I would have fallen.

Derek and I leave our family in the waiting room and we go to find out the news from our doctor. Looking back I am reminded of what a strong bond me and Derek have even in the worst of situations. When I am weak, he gives me strength and no matter what happens, we know we have each other to turn to. How blessed can two people be?

The doctor finally comes in to tell us about the surgery and he automatically starts talking about the logistics and I guess in my fear I missed him saying the surgery was done. Once he finally quit talking I said, Wait she is out of surgery?. He laughed and said yes things went great. At that moment I started shaking profusely from release of tension, fear, anxiety, every negative emotion possible maybe. I just can't believe it. I hug him and thank him for taking care of our daughter and sit to gather myself for a minute before walking out to our family. To this day I admire him so much. God blessed this 6 foot something inch man, with huge hands, the ability to piece together God's tiny angels and fix their ailments.

I experienced a flood of emotions I have never had before. I walked out to our parents, went straight to my sister and said she is ok. But instead of laughing or smiling I just sob and fall into my sister's arms. My baby girl made it through the biggest obstacle she had faced this far and she did it with ease. I couldn't stop crying from pure joy...I realized I went into this day with dread that she was not going to make it. I had no control over the outcome and when I knew she was finally ok, I was overcome with happiness and relief. I will never forget the feeling of God's grace this day. No other way to describe it. Derek and I could finally breath a little easier knowing that we were on the downhill side of the mountain we had been facing for so long. Luckily the doctor warned me that she would look pretty bad after surgery and she did. She was very swollen with a bandage over her incision and a drainage pump to make sure her wound was healing properly. The team got her to the room and got her comfortable. Over the next few weeks she healed and we began the rest of our journey. And what a journey it ended up being.

Even in the worst of situations God was there. Even when I was mad, turned my back completely from Him and didn't believe that He was listening to me, He was there watching over His angel and our family. Providing strength and peace shining through the eyes of a 5 pound baby girl. The day I found out our little girl finally had some relief and could breath easier, I began to breath a little easier too. A day of her having surgery doesn't seem like it would be one of my happiest memories but I don't focus on the surgery. All I see is the day Emmalynn could finally breath air into her lungs and was pieced back together...when a little bit of each of us was pieced back together.

God's Plan

It has been a long time since I have been able to post on here. Derek and I finally bought our new home and moved up to Prairie Grove in NWA. It is such an amazing feeling to be in our own home instead of apartment living. Even though I am overwhelmed with joy and feeling incredibly blessed about being able to buy our house, I have a bittersweet feeling because Emmalynn is not a part of this new journey. We packed all of her things into the spare bedroom closet that would have been her nursery. I just don't have the heart to go through her things yet. Is that healthy? Probably not but even after 8 months without her I can't face the boxes of her things. The idea of giving her stuff away feels wrong. I know she will never use them here on earth and we have no need for them right now but I have hopes for being able to use them again soon. While we were in the hospital, the idea of bringing Emmalynn home was a big part of what kept me sane. I had bought all of the things she needed to come home, my mom and I spent an entire day decorating and organizing the nursery and doing laundry to ensure her clothes were clean and ready to go. The longer we were there the more we realized if she did come home we needed to be close to the hospital because we knew we would have regular doctor appointments and check ups multiple times a month so that is what took us to Conway. This was never really our home though. Derek and I have wanted to live in NWA from the start and have always talked about planting our roots here so here we are.

Next week would have been her 1 year birthday here with us and this has made me go through a whirlwind of emotions. Just sitting in the classes I am in now, which I was supposed to take last summer but couldnt because of being on bedrest, has made me extremely sad. It sometimes feels surreal to be back in class and part of me feels resentment because, at this point, I was supposed to have graduated, obtained my license and be home enjoying our 1 year old daughter. Instead, I am trying to finish my degree and mourning the loss of our daughter while attempting to move on with our lives. I am not only sad, I am mad. Mad at what could have been...what I thought should have been. I am so thankful for my father in law Don who let me have these feelings without guilt. He told me while in the hospital that it is ok to be mad at God but to do it with open hands and release my feelings to Him. I know He has a plan and a purpose for all things and I have accepted it with the belief that good things will come out of our experience, but I still have times of sadness where these beliefs are hard to lean on. No one has the book with all the answers on how to grieve...we all do it differently and sometimes it can be overwhelming and lonely making the loss seem worse.

Carrie Underwood's new song, See You Again, sings so true to my heart. It starts with pain of her slipping away but ends with hope and faith that I will see her again. Emmalynn is with us all the time in the stars watching over us and sending us her love. This new song comes on the radio and I try to sing to where Emmalynn can hear me but the words can barely come out. This week I should be finishing up getting supplies for her 1st birthday party and seeing which of her little friends will be coming to help celebrate but instead I'm facing the 31st with sadness of what should have been. To try to get through the rest of the month I am going to post my favorite memories we had with her. Even if our time with her was short, it was filled with mommy/daddy bloopers, baby cuteness, parental learning, family and relationship growing. We were tested, entertained, and transformed in a matter of 118 days so I will turn my mourning into a sort of celebration of life.

My absolute favorite memory is captured in this picture. Look at that smile....so sweet and her outfit is so adorable on those cute polkadot sheets. Now imagine an hour prior changing her first outfit of the day because her good ole diuretics made her release what seemed to be a pound of fluid all over her sheets and outfit. That was an easy fix. Now fast forward another 20 minutes and imagine standing around in our private room talking to one of our favorite nurses, Lisa, and getting a wiff of something not so pleasant. Obviously we blamed Derek at first because lets be honest, he's a boy and anyone who knows Derek knows this isn't a far fetch to accuse him. But he denied it so I looked next at my little angel. I thought surely she just tooted being the cutie patootie she is but was I oh so wrong. I lift up her blanket and I see the beginning of the biggest blow out I have ever seen. At this point she was only 5 pounds so you can understand my shock when I see what is waiting for me. I undo her onesie and I see that my child had not only filled her diaper, but she had pooped up her front and down her back. Derek took one look and started to literally gag from the smell. It took us at least 30 minutes to scrub her down, change her sheets, and change her sheets again because she pooped on her first set of new sheets as soon as we put them under her! Talk about breaking us in right! After we were all done this was the look she had until she fell asleep. I would change a hundred dirty diapers a minute every single minute for the rest of my life if I could see this look on her face every single day. We got a bit of normalcy in a world of chaos and we got to be parents in a funny situation. I got to experience what other parents get to experience with the man I love most in the world. Priceless. Even on the worst of days, I can go back to this memory and find the strength to smile and I am reminded of the multitude of blessings we truly have had before, during, and after the hospital. Who knew a dirty diaper could do so much :)