The Day our Angel got her Wings

March 20, 2016:

I had been moved from ICU the night before and spent the evening on the Labor and Delivery recovery floor. My heart was not so ready for this move; because little did I know that the walls would be thin, that when I would be required to get up to go for my walk I would hear the cries of newborn babies, I would hear the laughing and giggling of families in adjacent rooms, a feeling I had felt when Levi was born. How many other Moms were struggling when I held Levi snug in my arms in the hospital room? How had I never even thought about that? I think part of me thought maybe there was a "special" wing in the hospital for that, but I know now, there isn't. A mom is a mom, whether her baby is in her arms or fighting for their life in the NICU. We were all the same.

When Adam and I woke up that morning I rang for a wheelchair so that I could go see my little Baby Girl, I was still on an IV and hooked up to several monitors so a wheelchair was still needed. I also wasn't able to stand for a super long time yet. As we made our way down to the NICU my heart was beating so fast. We didn't get a call in the middle of the night so that had to be a good sign, right? As we entered the NICU and made our way to the back right corner pod, I could hear the ventilator working hard and her alarms going off. UGH, why couldn't we come down today to here the normal beeps of the monitor? 

But there she was, sleeping in her little incubator (they had to keep her sedated so that she didn't pull on all of her wires) and still looking like the most perfect little girl. It felt like falling in love all over again, I just couldn't get over how much she looked like her brother Levi, except for that super blonde hair like her Mama. The nurse told Adam and I that she had "kept her on her toes" all morning. Not the greatest sign, but I had read about that from several hydrops blogs. We were well aware that the fight after Harper was born was going to be the hardest. Still, nothing can prepare you. As I saw the doctor make her way over I tried not to make eye contact. Lately, every discussion I have had with this woman was more and more sad news. I completely understand that is her job, but for once, I just wanted some time to myself, time to imagine  that everything would be ok.

Mrs. Wear? (Do I really have to look over and here what she is about to tell me?)
I look up and I can see it in her eyes. I know this is about to be devastating news. "Yes"
"I'm so sorry to tell you, but we have tried everything, Harper does not seem to be responding well to any of our treatments. She is on the highest dose of the meds that I can give her, she is on the highest setting I can have the ventilator on because I don't want to put holes in her lungs. Her reading's just aren't getting any better. I need to tell you now that per your request before, if her heart rate drops below 80, that is when I would want to start compressions. Take your time, but I want you and your husband to talk about the decisions that will need to be made today."

Adam and I looked at each other, "What do we do now?". The thought of "giving up" on your daughter is enough to bring your entire being to it's knees. When we looked at each other all you could see was love, love and so much pain. To be honest, we couldn't answer just then, we would decide when the moment was right, but we had talked about it a bit last night. That Harper's heart was the part of her that was keeping her alive, it was strong and we both knew that once her heart started to show failure, it most likely would just be a matter of time before we would have to say goodbye to our sweet baby girl. So we stayed with Harper for the rest of the afternoon and we just watched. We watched her, we watched the monitors, we watched the nurse give her medication after medication. Her heart rate was dropping, several times we gave each other the look. Deep down we both knew what this meant, but neither one of us wanted to say it out loud.

88, 87, 86... our hearts were racing.

Is this it? By now we were in the mid evening, just watching and holding each other and holding the hand of our baby girl who was desperately fighting. The tears started to roll down our cheeks, 85...84... All I could tell myself was "Please go back up, Please go back up". I was desperate for a miracle, I begged God to not let this happen. I wasn't ready. The doctor approached us again, "We are going to try one more round of medication, but it's not looking like things will resolve tonight." I held my breath as I watched the doctor inject more medicine into one of the IV lines for Harper. I couldn't breathe. Please; Please let this work. I was begging with my entire soul. I held Harper's hand, afraid to let it go. Will we be one of the lucky ones? Tears were streaming down our face, we knew it would take a miracle at this point. After a few minutes her heart rate started to climb, Adam and I glanced at each other with eyes full of relief for the moment. We knew this wasn't the end of her fight, but we were so incredibly thankful for more time. Anything at this point, was more than we could ask for.  The doctor soon approached, "Mrs. Wear, I'm not sure what is happening but Harper seems to be responding to the medicine, so for now we are just going to continue to monitor her." Oh my heart, these were words that this Mama needed to hear.

Adam and I soaked in as much time as we could with our little girl, we had decided that tonight we were going to take shifts so that she wasn't left alone. I had the first shift with her and I told Adam that I would call him if her heart rate dropped below a certain number so had plenty of time to make it for the worst case scenario. There were rooms right across from the NICU for parents to stay so he didn't have to be far. My IV had come out earlier, so Adams mom agreed to stay with Harper while the nurses took me to one of the rooms to attempt to put one back in. She promised to text if anything started to look strange. I went with the nurse and after several minutes and several failed attempts to get one in my weak arms the nurse decided she was going to have to go get a different size. I told them that Harper had given us a scare earlier so if it was ok with them, I wanted to go back with her while they rounded up more supplies. They agreed. As I approached my daughters pod I could hear the alarms going off. Adam's mom looked up and said "I was just about to call you, I already let Adam know."

My heart sank. Here we go again. Will we be as lucky this time? At this point it was a little after Midnight, we had made it another day technically. March 21, 2016. A day that forever will remain in my heart. Adam arrived quickly, grabbed my hand and held tight. We prayed. We cried. We watched the numbers drop again. "Please go back up." "C'mon little girl, you did it once before." "Please God, don't let this be it." I can't explain it but this time felt different, I think a part of us knew the minute the second decline began. Tears streaming down our faces. We knew we would have to make a decision this time. Do we attempt CPR, knowing that her body was failing, that brain damage was imminent, or do we hold her and watch her fly into another world? Both situations seemed like a Lose v Lose. What I wouldn't give or do to have her healthy and in my arms. This was real life. This was what watching a piece of yourself slip away felt like. An indescribable pain that will permanently be wretched in my heart and in my soul.

Her heart rate continued to drop. Adam and I looked at each other with tear filled eyes, neither one of us wanted to make the decision. I could hear the monitor continue to decline. I knew it was time, but I just couldn't. I just physically could not utter the words, "I'm ready to take my daughter off of life support." I wanted to fight, I wanted to pray, I wanted a miracle so badly it hurt. But time was not our friend, in a matter of a few more minutes Harper's heart rate dropped to 80. I looked at Adam again and with tears streaming down our faces we nodded at each other.

It was time.

It was time to hold our baby girl and get as many snuggles in as we possibly could before she left this earth. I called the nurse over and told her we were ready. She alerted the doc and a team of the most caring NICU nurses and docs began to unhook our daughter from every machine but the ventilator as quickly as possible so we could spend as much time as possible with our baby girl. They placed her in my arms and for the next few minutes her Dad and I did nothing but hold her, cry for her and love her. We studied every little line on her face, we watched her little belly move up and down from the ventilator, we held her tight for as much time as we could before her brave little heart stopped beating. I will always remember the doctor walking over, holding the stethoscope to her little chest and telling me there was no longer a heart beat. Our little girl had finally left her earthly body. I had never felt so much pain in all of my life and at the same time so much love.

It's hard to imagine this could ever happen to you. It's hard to believe that at the age of 30, I would forever have a hole in my heart that I feared would never go away. I wanted to believe so badly that this was all made up, just one really bad dream that I would wake up from. I wanted to believe that our miracle was still going to happen. Well, I now know that I was right about part of it, the sadness never goes away, it softens, but yet it remains. The memories of that day will never go away. It wasn't a dream, it was our reality. The hours that her dad and I were able to hold her after she died will forever be remembered. But one thing is for sure, it doesn't all come with sadness. There are so many memories we can look back on from that day and be so incredibly thankful for.

We were thankful for the time we got to watch her and know her. We were thankful for the moments of hope she gave us. We were thankful that she fought so incredibly hard. We were thankful to be surrounded by love and prayers. We were thankful she was able to be baptized in the hospital. We were thankful that we got to hold her and be with her when she was placed in the arms of an angel. We were thankful that she was ours and we were hers and nothing was ever going to take that away from us.

Harper may not be with us physically anymore. She flies high above us now, watching over our loved ones and fulfilling God's plan in a way we never imagined. Regardless of where she is, she will always be a part of us. I may not always know how to answer questions regarding my history and hers but one thing is for sure, she will never be forgotten. We will cherish our daughter and love her from afar. We will celebrate her with all of our hearts and we will remember those three beautiful days we spent with her and the love that surrounded us each and every moment She was our daughter, she was our second child, she was our fighter and for that we are so incredibly blessed.

*WE LOVE YOU HARPER LYNN!*