I don't even know where to begin and I don't want everyone to read a 500 page book. I will just tell some of my most favorite memories from the NICU.
Obviously I was up in the NICU every second that I could be. I was also recovering from a painful c-section so I wasn't able to be up with them 24/7 although sometimes I desperately pushed my limits. The first few days ran into each other. It was hard enough trying to figure out the NICU and all of their rules. At this point we didn't even consider that Hazel would pass away we were just happy that they were here on earth with us. We knew Hazel had special needs but we didn't realize how severe. It was hard looking at them through the incubators… not being able to pick them up and hold them. These are some of my favorite moments of the first few days:
-Opening Parley's incubator door for the first time and touching her soft little fingers.
- Seeing Hazel's dark hair and skin (just like her mommas)
- The nurses telling me Hazel went off of her respirator and was breathing on her own with the help of some oxygen. This gave us hope and at that point I didn't think she would ever go back to the respirator. I feel so naive looking back but we honestly had never heard of trisomy 18 before we had gotten pregnant. These are the only pictures we got with Hazel alive and not on the respirator. It was in the middle of the night so the quality is horrible. I love these pictures more than anything because you can see her beautiful little face and mouth.
- Hazel opening her eyes every time she heard our voices when we walked into the room. Parley was ALWAYS sleeping. She hardly ever opened her eyes when we came to see her. But Hazel knew our voices and knew she needed to take every chance she had to be with us.
- Seeing pictures of Parley after her first bath and the cute little hat the NICU gave her. I wasn't there to witness it because I was down in my room sleeping/recovering .
- Hearing Parley's small cry. I never got to hear Hazel's cry because of her breathing tube. Although, Ethan did get to hear Hazel's little voice once and I am SO grateful one of us got to.
- Touching Parley's soft blonde hair (WHAT? My babies were not supposed to have blonde hair! haha)
- Watching Ethan change Parley's diaper for the first time.
- Actually changing Parley's diaper for the first time. Let me tell you it was a hard thing to do with all of those cords getting in the way.
- Touching Hazels soft wrinkly skin and taking her temperature.
Monday afternoon, after being in the hospital for a week, I was released to go. I didn't want to go home. I didn't want to leave the hospital without the twins in my arms. It was so easy to wake up in the hospital bed and wheelchair myself up to the NICU to see my beautiful girls. That monday night we got a call from the doctors that would change our lives forever.
We went into the hospital. They had gotten the results from Hazel's blood tests and it confirmed that she had FULL Trisomy 18. The doctor told us that since she was born prematurely, had a heart defect, and had problems with her lungs that her life expectancy was 2 weeks. They told us there are children who live to 1 year of age and rare occasions that they live past that and into adulthood. The ones that do survive are severely handicap and will be in and out of the hospital the rest of their lives. She just told us our odds. They didn't pressure us into anything. Just told us the facts. She had tears in her eyes and told us that she could tell this baby was meant to be in our family. She mentioned God and I was so happy she did. They told us what our choices were and that they would honor whatever we wanted. They left the room for us to talk. As soon as they left I collapsed in Ethans arms. My shoulders were shaking uncontrollably and I could hardly breathe. We held onto one another. We were both in tears as Ethan prayed with his entire being on what we should do. We prayed to help us understand Hazel's condition and to help us know what was the best route for our sweet daughter. We ended the prayer and looked at each other and I said the words, "we need to take her off the respirator" I don't know where it came from or why I even said those words so fast. Looking back I should have asked a million and one questions but in my heart I knew that Heavenly Father had put those words and thoughts in my head. We both agreed and cried some more. The doctor came back in and I told her our decision. I told her how I knew without a doubt that Hazel has a special spirit and how grateful I was that she chose me to be her mother. The doctors and nurses were so stunned on how well we handled it. She told us that there was something special about our family and that she thought we were doing the right thing. We called our parents and could barley get through the phone calls. It was tough. We sat in that room for about an hour crying and talking and then went back into the NICU room and sat with our sweet girls.
I then told the nurses that we wanted to take the comfort care route with Hazel. No more poking and prodding with needles, no more test, no more blue light. I just wanted her last couple of days to be somewhat enjoyable. We made the decision that on that Thursday, August 29, 2013 we would take her off the respirator. HARDEST decision of my entire life. Once they knew Hazel wasn't going to live I got to do almost whatever I wanted with her. I got to change her little diaper. I felt like her tiny little legs were going to break in my hands as I lifted her up. Then 5 days after she was born I was finally able to hold her.
They placed her in my arms and her tiny little eyes opened and looked straight at me. Her spirit wasn't that of a baby. It was so much older and wiser than mine. I literally could see heaven through her eyes. I feel that Heavenly Father let Hazel know what was going on. She knew exactly who we were. She knew that she didn't have much time and that we had a hard decision to make. Her eyes weren't that of a severely handicap baby. Her eyes told me that she loved me and that I was making the right choice. I held her for over an hour and just soaked her in. She felt like a feather; so tiny and perfect. I studied her as much as I could. She had the cutest little blue sun hat on that the NICU provided and she looked like a little old lady baby. We LOVED her in that sun hat. My mom said that she looked just like my great grandma Hatch. It made me smile.
- When Ethan stuck his finger inside the incubator and held Hazel's hand and as soon as their fingers met she opened up one little eye and looked straight at him. It was like she was saying "Oh! Hi dad!"
- When we got to put parley in clothes for the very first time. It was hard because we were so excited of the great lengths Parley was taking. She was getting stronger and healthier by the minute. Parley never needed any special treatments. She was born too early to learn how to suck and swallow in the womb so she had a tiny feeding tube but other than that she was just the healthiest little preemie ever. All the while Hazel was a few steps away getting weaker and weaker by the minute. I felt guilty a lot for being happy and excited about Parley when her sister was having such a hard time. So many mixed emotions. But man did Parley look so cute in that Preemie onesie! It cracked me up that it was too big on her!
Wednesday came. The day before we took hazel off the respirator. I was patiently waiting for this day because they said I could do kangaroo care with Hazel. Skin to skin. I had been craving it and it was finally here. They placed her tiny little body on my chest and I felt whole. I could feel her breathing. She could hear my heart. She was home. Her tiny body fit perfectly on my chest. I laid there with her for the longest time. Smelling her hair. Kissing the top of her head. Rubbing her tiny little back. Holding her small bum in the palm of my hand. Her little clenched fingers held on to my chest as best as they could. I could feel her tiny fingers run over my skin. It was what I had been dreaming of. The nurses had to turn up her respirator and it was working extra hard to keep her breathing. They had given her morphine earlier that day because the tube down her throat was rubbing and causing her so much pain. I could hear her little gasps of breath and it broke my heart. Friends and family took turns coming in and seeing us together. Over 15 people were there to see her and Parley.
Then out of the blue one of the nurses came over with a little bundle of blankets. It was Parley! The cords were all over the place but we made it work. Then the nurse placed Parley in my arms. My twin girls together for the first time! As soon as they placed Parley in my arms next to Hazel I heard Hazel's respirator go silent. I frantically looked down at her and then at the machine. Her breathing had steadied and she was absolutely at peace. Hot tears rolled down my cheeks. She felt her sister near. This was just what she needed. My life saver of a sister Brittney was there with her camera and snapped shots and videos of the whole moment. Ethan came over next to us and we spent the next 30 minutes together as a whole family. My life had never felt more complete than that moment. The nurse then had to take Parley away to do some of her cares and as soon as she left my arms Hazel gasped and her respirator went back up. I could hear it get louder and stronger. Poor little Hazel just wanted her best friend and sister near. Once again, Parley came back and once again Hazel's breathing steadied. It was truly amazing. The bond that these sisters have is such a miracle. I feel so blessed that I was given twins. We snuggled a bit more and then it was time to put her back into the incubator. I wanted to hold her on my chest and stay in this moment for forever. I didn't want to let it go. I didn't want tomorrow to come. I didn't want to say goodbye to my sweet daughter.
The hospital gave us a small "nesting room" inside of the NICU for parents who were in our type of situation so that we could be close to Hazel incase anything happened. It was so nice to be able to sleep in a hospital room and get up and see the girls when we pleased. That night around 2am Ethan and I went to visit the girls. It would be our last night with both of them together here on earth. This night was extra special because Ethan was able to hold Hazel for the first time. He was also able to do skin to skin. Seeing them put our sweet Hazel on her daddy was an emotional moment for both of us. I knew Ethan would be a great dad but man he exceeded my expectations. The love he has for Hazel is unreal. They had such a special bond. He sang her a special Jack Johnson song; the one he sang to her through her incubator every time he came to see her. These are the lyrics he would sing her:
I watched as his big hands held her back. The only thing you could see was her tiny little head on his chest. They brought Parley over and I was able to hold her next to Ethan. We were together. This family of mine was just what I had dreamed of. We are a forever family and nothing brings me more comfort than knowing that. We stayed there for hours and into the early morning. Neither one of us wanting to say goodnight. Tomorrow was our last day of this tiny chapter with Hazel and we didn't want it to end.
Hazel's Passing: To be continued