The Fight

Adam spent the night in one of the rooms near the NICU on the night of March 18 so he could be nearby in case he was needed for our little fighter. She had made it through the night, Adam went to visit her real quick the next morning before he headed back up to the ICU to see how things were going.  As far as we knew, Harper had made it through the night, was fighting hard and that, for now, was the bright light we were focusing on. Harper had another chest tube placed in her sometime overnight, I was so unaware of what was happening to our baby girl. I was so unaware of how much she was struggling. That morning my OB came to visit, one of the many visits we would have during my stay. She told me my stats were looking good, but not great, that I would need a plasma transfusion to help bring me back up to speed. She said that they would use the same donor that I received the blood transfusion from since everything had been matched the previous day. She also reminded me of one important decision Adam and I were actually able to make before Harper was born...

"Kate, are you and Adam still interested in having Harper Baptized?" I quickly responded "Yes". So much had happened that I had almost forgotten that decision. My OB left the room and stated she would take care of everything. Could she be any better? She just knew how to bring peace to an incredibly uncertain situation. Within 15 minutes of her leaving the room we got a phone call from her. "Kate, the priest is actually here now, so I'm sending someone up to come get you. I'm clearing you to come visit so you can be here for the baptism." My heart skipped five beats when I heard those words.

FINALLY.

I get to see my daughter, I get to study every crinkle in her skin, every roll on her body, every strand of blonde hair. I finally get to see it all for myself. The nurses arrived in my room shortly after hanging up the phone and I was prepped to get up. It was my first time getting out of bed after my C-section and I was warned it would not be pretty. I told them "I'll be ok" because deep down I knew I had one thing on my mind and that was to go see my daughter, so pain or no pain, this was happening. I made it into the wheelchair, with my IV drip friend attached and away we went. My heart was racing, I was so excited and yet I was so fearful. I had no idea what to expect. I had been waiting for this moment for almost 24 hours and now it was finally here. I was going to meet her and I was going to watch a very special moment all at the same time. Adam had been to the NICU so many times he knew the drill by now. We checked in at the front, we washed our hands and he took me to the pod that Harper was staying in. She was in the far back of the room and as we passed all of the other little ones I realized for the first time how incredibly sick mine was. Harper was the only baby (out of five) in her pod that was on a ventilator. Her alarms were constantly going off, meaning something was falling below the "limits" that the doctor had set. But when I was able to lay my eyes on our sweet girl, I couldn't hear any of those noises.  My heart was so elated when I saw her, I was in a trance. When I tell you I could not take my eyes off of her, in no way am I exaggerating. I remember just staring at her, taking it all in and never once looking back. They had opened her bed so the priest (the same priest whom baptized Levi actually) could begin the ceremony. It was a quick one, since she couldn't be outside her incubator for long and yet it was so incredibly special.

As they closed the incubator up and the priest said a few words to Adam, I just sat right next to my little girl, talking to her, praying over her, staring at her. My first words out of my mouth when I saw her were "Wow, she looks so much like Levi." And she did. The only difference was that she had blonde hair (like her Momma) and Levi had dark hair at birth (like his Daddy). She was beautiful and she looked nothing like a preemie at all. I saw the weight 7 pounds, 6 ounces written on her dry erase board. Most likely her weight at her last weigh in and my heart just started pounding, that was Levi's birth weight. What a coincidence. That has to mean something right? That has to mean everything is going to be ok? That's such a healthy weight. She's going to be ok. Remember, Dr. Pepperell said her APGAR scores when she left the OR were actually much better than they predicted.

That moment of HOPE, that moment of pure bliss lasted only for a few moments for this Momma though. I was about to get the most devastating news of my life. News that I had hoped would never come the day we found out Harper was sick.

"Mrs. Wear" (Harper's NICU doctor was trying to get my attention)

Do I have to answer that's me? Can't I just sit here for a moment and pretend like the world is good and that everything is going to be perfect? By the tone in her voice I could tell it was not going to be great news like I had just been imagining.

"Mrs. Wear, I need to talk to you for a moment about your daughter. I'm so sorry to tell you this because I know you are trying to get well yourself but I need to let you know that your daughter is VERY sick. We are trying our best to keep her stabilized but her readings are not where they need to be. We are giving her everything we can possibly think of but she has been keeping us on our toes. I'm so sorry to tell you but I don't think she is going to have much longer with us. She is just very very sick."

Tears. Insurmountable Tears. So much so that I was asked several times if I was ok. So many times I wanted to scream "OF COURSE NOT!". She just told me my daughter was dying, how can any mom say that they are ok at that moment. I just wanted time for myself, time to be with my daughter, time for us to be a family here on earth for as long as that might be. The doctor had no idea if we had days or if we had hours, Harper did not present with a diagnosis that many knew a lot about. Since there wasn't a reason found for her diagnosis the most they could do was treat her symptoms and it looked to be that her lungs were just severely underdeveloped. They weren't circulating the oxygen throughout her body like they should, they just couldn't keep up with the demand. But her heart, oh her heart was strong, her heart beat steady and it was making up for the work that the lungs just couldn't handle, but we all knew that could only last so long. If she didn't make a turn for the better tonight, it wasn't going to be long.

I stayed for a few hours during my first trip to see her, leaving was the hardest thing I've ever done at that moment. I prayed that we would get some more time together and up to the ICU room I went for my plasma treatment. I wish I could say that I remember fully what happened when I left that NICU room but to be honest, all I can remember feeling is numb. Words can't describe it. The girl I just left in the NICU looked so perfect on the outside and yet on the inside, she was dying. How? Why? We aren't giving up though, there's still a little HOPE, I've read stories like hers where the parents said they almost lost their child multiple times. I lingered on that hope for the next few hours. After my plasma treatment my scores were looking better, I was being discharged from the ICU and given a regular room on the post delivery floor. I found my way to my new room, met with the nurse and then asked if I could get a wheelchair to go visit Harper again.

Adam wheeled me downstairs this time, and my heart was racing, I couldn't wait to see her again, to hold her hand, to sit by her and study every crease and every line of her little body all over again. She was such a cute baby. When we arrived,  the evening NICU nurse could not have been any sweeter, she was apparently the same nurse as the night before and told Adam and I that our little girl liked to keep her busy. She was so positive though, and so upbeat and made such a dismal situation a little lighter. She was even able to put a smile  on our face, something we hadn't felt in quite some time. She also let us know that we had made it down just in time for diaper change and asked Adam if he wanted to help her change Harper's diaper. Of course he said yes and to work he was put. I can't even explain how that little gesture helped these grieving parents so incredibly much. We were doing a normal thing, that we would do for a normal child and that little piece gave us HOPE, gave us a sense of normalcy even if it only lasted a few moments. Harper's vitals were still looking about the same that night, no change; in my mind I just kept telling myself "At least they aren't getting worse."

The NICU night doctor introduced herself and explained to Adam and I, just like the day doctor did, how sick Harper was. I told her I understood. She then asked if things were to get rough that night if we would want them to revive her. Not a question any parent ever wants to answer. Adam and I looked at each other and we both knew we weren't ready to give up on her yet. Harper's heart rate was perfect and we knew her heart was trying to so hard to compensate for the rest of her body, so we simultaneously said "YES." The doctor reassured us she would do everything she could and double checked she had our numbers correctly promising to call if anything were to happen over night. We stayed with Harper for a few hours that night, until I knew it was time to get some rest. I finally let go of my little girls hand and had Adam bring me back upstairs where we both would attempt some rest. {It's pretty impossible to "rest" while you know your daughter is fighting for her life, but nevertheless I knew the next day was going to be just as long so I attempted to get as much as possible.}

We had no idea what that next day was going to bring us, that March 20th of 2016 would be the last full day we would see our daughter here on earth. We had no idea that at just 30 years old we were going to have to make some of the hardest decisions of our lifetime. We just had no idea. But for now, we were grateful that we had another day with our daughter awaiting us.

And with that, I pick up another broken piece, after sharing a bit more in depth this Unimaginable Journey and I place that piece along this broken path knowing that one day, this path will be complete and on that day, I will be reunited up above with the ones I love.