I’ve been dreading writing this entry for about a month now which explains why I haven’t written anything in about that long. As you might know, the 21st is my baby girl’s birthday. I’m not sure how I’m going to be feeling on Sunday but I wanted to get some things out before I changed my mind or couldn’t get them across.
As I think about the events that led up to the day that you were born, I remember I was feeling a bit scared, anxious, proud, nervous, and a bit excited all rolled into. She wasn’t going to be born under the best circumstances and we all knew it ahead of time. When the time came, the SU was rolled into the OR and all the nurses and doctors were ready and the procedure began. I had to sit by the SU’s head on a stool so I couldn’t see anything. The sight of blood makes me squeamish and I didn’t want to take away any attention that needed to be placed on the baby or on the SU. I could hear everything though. After a few short minutes you were welcomed into the world without a sound. You weren’t breathing on your own and I remember that you were a shade of purplish blue. We later learned that your Apgar score was 1. Your heart was beating and that’s the only response you gave. Due to the circumstances, you were whisked away to the level 3 nursery with your grandmother right by your side. I stayed to be with your mom.
Being in the level 3 nursery was a foreign concept to me. I’d been to one on a scouting career night when I was 17 but I never thought I would be there myself for my own child so I didn’t really pay any attention to anything other than the really tiny babies that we saw. There was the giraffe, the isolette, all the tubes, the IVs, the machines, monitors, the alarms, the beeping, the medical terminology, figuring out which doctor was on today, which nurse we had that day, the procedures that needed to be done, and a myriad of other things. It was overwhelming to say the least. I’m a sponge so I soak a lot of things in and then decompress hours later.
We had our ups and downs in the NICU where some days were good and some days were bad. You started on the ventilator, then had to go back on the oscillator, back to the ventilator, finally off the ventilator onto nasal canulas, back the ventilator, etc. In the time that we were at Evergreen we learned who the staff was, their names, things about their family, their schedules, which doctors were on when, and when your medicines were due to be changed. Most of this time is a blur to me and I don’t know if its me blocking it out or if it was just so overwhelming that I’ll never remember much of it.
These are the things that I do remember about you. I remember that you were a fighter and you didn’t give up. You knew we were there even though you probably couldn’t see us. You knew us by the sounds of our voices. I knew that you knew who I was because when I would walk in the room and touch you or talk to you I could see the response on the monitors. I remember that when I gave you your name and a blessing you reached up with your tiny hand and touched my palm as if to say, “I hear you daddy. It’s ok and thanks for doing it.” I remember the first time I got to hold you. I was so scared that I was doing it wrong or that I would pull a wire or tube or something else would happen. I can’t describe the feelings I felt as I got to hold you in my arms. It was the proudest moment of my life and something I’ll never forget. I’ll always cherish that time we had together. You knew it was me holding you. The nurses and your mom noticed it too because the alarms didn’t go off and your sat’s stayed up in the upper 90s which hadn’t happened in a while. I just held you and you were so tiny. I didn’t get to hold you very much and that’s something that I regret. Above all, you were my miracle baby. We just didn’t know it yet.
As the days turned into weeks, and the weeks into months we began to discover that something was wrong. I remember I was holding you and you started shaking. I wasn’t sure if you just had a cold chill or not and you had one episode and then another. I called the nurse in to see you and you had another while I was there. She immediately went and got the doctor and the doctor told us you were having seizures. He wasn’t sure why but he said he needed to do some procedures to try and figure out why. Within a couple of days after that you nearly died. It was on a Saturday morning in December. (I’m sorry I can’t remember which day exactly. It was the first or the second Saturday but I’m leaning more towards the 9th). While the nurse was in the room your heart stopped and you stopped breathing. A code blue was called and everyone came running. I don’t remember much of what happened that day other than the doctors told us not to leave that they weren’t sure if you were going to make it or not. We kept a vigil in your room with either me or mom being there at all times. They ran a bunch of tests and had to give you epinephrine two or three more times that day.
It turned out that you had contracted a nasty bacterial infection called Pseudomonas aeruginosa. They told us it was a miracle that you had survived and that most preemies don’t survive it. They had to do a spinal tap to make sure it hadn’t infected your spinal fluid and I remember that was the one day that I finally heard you cry. I couldn’t barely stand to listen to it and your mother burst into tears. I had to take her down the hallway to calm her down. Your spinal fluids came back clear and they said that was a good thing. They thought that with medication and the fact that they caught it so soon that you would make it although the percentages weren’t in your favor. This episode led to you being back on the oscillator and ventilator off and on again. After a couple of weeks you were making progress but the test results weren’t showing anything that the doctors could see. Then the seizures came back. You had more while I was holding you and the nurse said you had one so bad that you almost jumped out of your crib and bounced onto the floor. The doctors decided to do another EKG and an ultrasound of your head. Once they did that the story of what happened to you and why you were our miracle baby began to unfold.
The results of the ultra sound on your head showed the doctor some things that he couldn’t tell what they were exactly but it didn’t look good. He couldn’t explain your seizures but your heart patterns were normal and your heart was just fine. He gave us the news that we should transport you over to Children’s Hospital in Seattle. I was terrified once again because all I had heard were some not so great things about Children’s and that if you had to go there something was really wrong. You were transported to Children’s on Christmas eve. When we got there the nurses and doctors explained to us that they would get you settled in and get you stable but that nothing was likely to happen until the 26th because of the holiday. We spent Christmas in shifts at home and at the hospital.
They ran all kinds of tests on you. Blood tests, ultra sounds, an MRI, and almost anything else they could think of. We had all kinds of specialists coming by to see you. The battery of tests they ran on you provided us with the information we needed but didn’t necessarily want to hear. They called meeting with all of the doctors, the nurses, the social worker, the palliative care representative, and us. In this meeting it was discovered that you had suffered a massive stroke in utero. When the doctors were explaining what had happened we were kind of in denial or trying to rationalize it saying ok, so she’ll be a little slow or maybe she won’t move as well but we can deal with that. It wasn’t until they showed us the results of the MRI that we understood. About 85-90% of your brain matter was dead. All that was left intact was your frontal lobe and your cerebellum. It was like cold daggers into our hearts. My heart sank as I knew it was REALLY bad news. The doctors explained that it was rare for a fetus to have a stroke in utero and even more rare for one to survive it to be born and for one who suffered one as bad as she did to live for two months. We asked lots of questions and most of them I don’t remember other than me asking if you could see or hear us or if you knew we were there. I couldn’t bear the thought of you not knowing I was there. They told us they couldn’t be sure but that you seeing anything other than lights or darks or anything at all was slim to none because the area of the brain that processes the images sent from your eyes was dead. They said it was like running a computer without a monitor. The computer runs but with no monitor you can’t see what’s going on. They said you were likely to hear us because you responded to your name and to other sounds. From that they deduced that yes you knew we were there. I only asked because I wanted validation that I hadn’t failed as a father by not being there as much as I probably should have been.
After we learned all of this we retired for the night to our room upstairs and we both just crashed on the bed and cried. We had no idea this could happen and all of the questions were running through our head. Why us? What does this mean? Where do we go from here? What kind of life will she have? Could we have caught this sooner? As the days progressed we hoped that you would get better but it didn’t appear to be going that way.
I remember on December 30th I got a quiet feeling in head almost like someone whispered that now that we knew what was wrong that your time on this earth was done. I dismissed it because I didn’t want to believe it. On Monday your mom called me an we were talking on the phone and she said something to the effect of, “I think maybe its time we sign that DNR they keep asking us about.” I remember crying and through my tears on the phone I said something like, “I’ve been getting that feeling too. I think maybe as much we don’t want to that its time for us to let her go.” That was the hardest thing in the world for me to decide. You were my miracle baby and my pride and joy. I was so proud of you and I couldn’t bear to let you go. However, the answer I got from your mom sealed it for me. She said to me, “I’ve been feeling the same way. How long have you felt that way.” “Since Sunday afternoon” I said.
We got to the hospital on Monday and we told the doctors that we would sign the DNR and that if you got progressively worse that maybe it was time for us to let you go. You weren’t getting much better and we felt like you needed another blessing. Dallin S. came by to give you a blessing Wednesday night and our thoughts were confirmed. He gave you a blessing that released you back to your Heavenly Father rather than trying to heal you. He said to us after he was done, “You never expect to give a blessing like that and I hope I don’t have to do anymore like that.” We knew Wednesday night that our time with you was small. We weren’t sure how much longer we had.
I got a phone call Thursday morning and I was instructed to get to the hospital and that we didn’t think you would make it much longer. You were on the oscillator and your condition had deteriorated overnight. You couldn’t keep your sat’s above 80% and since they day you were born they hadn’t been that low. We called everybody to the hospital to say one final goodbye. We knew that this was the day that we had to let you go home. As the day wore on you got worse and worse and the decision was finally made to unhook you from your all of your tubes and machines. They told us that you wouldn’t likely live much longer than 30 minutes or so. I remember your mom getting on the hospital bed and laying down and then they unhooked you and laid you onto the bed next to her and she began to scream at you. I didn’t like her screaming at you and it scared me and she knew it. She needed a miracle and she needed you to breathe on your own and be healed so we could take you home. Those 30 minutes that they gave you turned into 45 minutes, then to an hour, then to two, and then three. We obtained the proper paperwork to take you home so we could have some privacy. Your cousins, your uncle M and Auntie J came by. Grandma and Grandpa were there and that was the first time that Grandpa got to hold you. He always had refused before but not because he didn’t love you. He was intimidated by all the wires and machines and he didn’t want to mess it up.
I always believed that you were always thinking of us first rather than yourself. You waited until we knew what was wrong with you and to what extent you had suffered. It was only appropriate that you passed when we found a moment to be all together and joking around that you knew in that instant we weren’t all fixated on you and that it was ok to go while we weren’t looking. We had just put you down on the bed to change you into some new clothes and put you in the car seat when you left us. We knew you were gone by how your body was. The nurse silently confirmed for us that we were right. You died on Thursday January 4, 2007 around 5:50pm.
You left behind a family who was crazy about you and especially a daddy that was looking forward to doing all those daddy things with you. Diaper changes, feeding times, rocking, snuggling, trying to get you to say mama, and most of all sitting on the couch watching Hockey Night in Canada while I tried to explain to you the nuances of ice hockey.
At the time I was shocked and felt numb. I still do some days and I do right now. Sometimes I think about all the things you would be doing now had you not had the stroke and sometimes I feel cheated. I think I’ll always feel that way in some respects. Instead of letting this eat at me and focusing on all the negative things I’ve chosen to honor you by remembering the few good times we had and the little victories we had together. You beat the odds and really were my miracle baby. I miss you so much I can barely stand it. It hurts because I see all the other dads with their kids and just reminds me of how much I’ve missed out on and I think its not fair. My mother always told me life isn’t fair but damnit, she didn’t have to be so right about it. I
I’ll always try to focus on the good things and not so much on the bad things. You had your time here and were needed elsewhere to serve in another capacity. In a way I think I must be pretty special to have been given a child like you. I just hope I can make you proud and that when you’re looking down on me from heaven that you can say to your friends up there, “Hey did you see that? That’s MY daddy down there doing that.”
I love you baby girl and miss you so very much.
Happy Birthday Amy Lynne,
Love,
Daddy
), walking, and doing whatever else she could to challenge us.