Monday, May 16, 2011

Surrounded by Angels (Part 2)

Just after 1:30, our nurse came to get us. As she led us down the hall, I couldn't help but feel like I was being led to my death. She led us to another office where our doctor, social worker, and the neurologist were waiting. 

We sat down. The doctors began to fumble in the unfamiliar setting to pull up the scans to compare the previous week's and that morning's images. The neurologist couldn't figure out how to get the images side by side and how to use the mouse to point out specific things - as he struggled trying to get the right image and get them to be side-by-side I nearly had an anxiety attack. I was so close to yelling "I don't care about the side by side. JUST TALK TO US!!"

But I sat there. In silence. telling myself to breathe.

They showed us the images. Our hopes were destroyed. That miracle we'd been looking for wasn't going to happen. Things weren't better - but they weren't really worse. His brain hemmoraging had progressed but only slightly. We asked questions making sure that there wasn't a glimmer of hope some place we hadn't thought of. Again we were told he would be paralyzed on the left side of his body. Because he had basically suffered a severe stroke, he would never walk, talk, or do anything for himself. He had a very high chance of being severely mentally handicapped and would have some degree of cerebral palsy.

Again we were told of our options. To either keep sustaining him and choosing that outcome as his best case scenario or to let him go - comfortably and peacefully. We cried. They told us that there was no rush. That the parent room would continue to be ours as long as we needed.

I asked about pain because I just wanted to make sure he wasn't suffering now or ever. Fred commented about how we didn't think it was fair to keep him trapped in a body he couldn't use, to which the doctors looked at us as if we were confused.

We talked about quality of life. Discussing whether we were prolonging the inevitable and only keeping him for selfish reasons. We were reassured that there was no rush - but you could tell my our doctor's tone that she didn't expect him to make it much longer in the state he was in.

We knew the answer. We had had it confirmed multiple times. Freddie's journey was finished. He had come to Earth for what he needed and was simply hanging on because we needed him. We hadn't been able to say goodbye, yet in this moment we knew that was what needed to happen. 

We told the doctors - they all seemed surprised that we would choose to have it happen that day. Telling us that we didn't need to rush. But I knew there was no way I could spend another night in that hospital knowing it was coming. It was time. 

I asked what we did from there - because there was no way I could utter the words to end his journey. Our nurse who had been silent the whole time simply said, "all you have to say is that you're ready to hold him. As soon as you're ready, we'll make it happen".

We left the room feeling a sense of comfort, relief, sadness, and heartache all rolled into one. We told my family who immediately began to try to get a hold of Holly to come take pictures that evening. Knowing that his journey would end that night, my parents set off to change my sister's flights (once again), renew their rental car (once again) and see what they could figure out with the photographer.

We went in next to Freddie and just sat. Trying to absorb every inch of him. Because we had made the decision they weren't going to give him any additional transfusions or progressive care. They were to keep him where he was essentially. Our nurse was so sweet and will actually receive her own post. She sat and talked to us but then would give us our space to spend time with our baby. She was the nurse we needed that day (more on that in her post).

It was so strange but as we sat there next to Freddie, for the first time in a week I felt a glimmer of happiness. At that moment, I knew this was something I could handle. God wouldn't give us something we couldn't do - so we could do this. I felt this overwhelming peace and comfort. There was this feeling surrounding him that you couldn't help but feel peace. Fred and I were able to openly discuss where we would bury him, how we felt, and how lucky we had been to have the chance to be with our little boy for a whole week - without tears. We were just happy. Happy to have this time together as a family. Happy to have had a week to spend with our son - holding his hand, singing him songs, and tickling his feet. Happy to know he wasn't going to be in pain or have to struggle. 

We didn't know when it was going to happen. It was kind of something that we were waiting to see when a photographer could come. We sat next to him all afternoon, only leaving when sterile procedures were going on. Unfortunately, Holly was unable to come due to her schedule. Our nurse had told us about a nurse that could take pictures so we thought it was an option though we weren't excited about it. As we tried to figure something out, I made a last minute phone call to my good friend Hillary. It was probably around 5pm. I called Hillary and just asked if maybe she would call her photographer friend Aubry to see if maybe Aubry would be willing to come take pictures. I had never met Aubry - but I knew she took amazing pictures. Hillary quickly called Aubry who dropped everything and worked it out to come. She wouldn't be able to make it out there until about 9:00 but she would be there.

Then it turned into the waiting game again - but this time without the pain, dispare, and utter devastation. We were still all of those things but we couldn't feel it. 

Our room was cleaned up, bags removed and taken to the car. We spent the evening rotating with Freddie and trying to get as much time with him as we could. When 7:00 came, I was actually devastated to see our nurse go. I almost begged her to stay on until we too were ready to leave. Our night nurse was one that had been with Freddie quite a bit before. She wasn't unfriendly but wasn't overly friendly either. That night because she knew of the events that were to take place, she was incredibly nice. She opened up to tell us that she too had lost a child. While she didn't say much, she did say how things would get better and that we would be happy again.

Note: There is no way I can fully describe the experiences we had this night and I guess there isn't a reason I need to. I wish I could have bottled the feelings and comfort we felt that night. To share with others, hold on to during our hard times, and to feel forever. I can't put into words everything that we experienced as we returned our son to our Heavenly Father that night but I hope that in reading this that you too can feel the Spirit and know of our testimonies.

At about 9:30, Aubry and Hillary got there. The nurses had set up curtains around Freddie so that we could have a little privacy. Luckily, there was only one other baby in his pod and his parents weren't visiting so we were able to bring everyone back. 

We were as ready as we were ever going to be. 

The nurses brought over a rocking chair and they moved his bed a little to give more room for us to sit with him. They were going to sedate him to keep him comfortable and calm. They would remove what they could and we would hold him as he was still hooked up to the ventilator. As soon as we were ready, they would disconnect his ventilator switching to manual oxygen and we would go back to the parent room where we would say goodbye in private. 

As they prepared his sedation, the oxygen, and everything else I just stood next to him. He was so beautiful as he laid there calmly. As I stood there holding his hand, all of a sudden his heart rate spiked and for the first time in a week I was pushed aside because something wasn't right. He was crashing. I have never been so scared. I knew it was the end but this wasn't the end that we'd planned. 

Somehow his air tube had come out, they had to rush to stabilize him and give him manual breaths. His doctor strongly suggested that we come hold him then and make this our goodbye. I couldn't move. I sat there paralyzed unable to answer. She then asked if we wanted them to hook him back up to the ventilator - she must have asked a few times before it registered because I then semi-yelled "I don't know! I can't make that decision!" Fred instructed her to hook him back up. I began feeling guilty - what if this was him being called home and we made them bring him back. But then Fred told me we were okay. Freddie needed us to say goodbye to him the way we had planned so that WE could have the closure we needed. They did and once they stabilized him they had me go over and sit in the rocking chair. 

They put a warm blanket on my arm and placed my son in my arms for the first time in both of our lives. He was my son. My miracle. My greatest achievement.

He was so tiny. Holding his 1lb 3oz body was the greatest moment of my life. He was the most important thing in the world and nothing else mattered. I just cried. Fred sat next to me and held both little Freddie and me. Our family came up and got to meet him close up. 
After a while I switched with Fred so he could hold him. Seeing Fred hold his son was another of the greatest moments in my life. I can't explain it but I've never felt so proud.

While sitting next to Freddie it was much easier to kiss his sweet head because when you were holding him you were limited in the movements you could make with his air tube being so fragile. Next to him, I was able to just kiss and smell and talk to him much closer. 

We took a bunch of pictures, talked to Freddie, and eventually it was time. They unhooked his machine and switched to manually breathing again. Fred stood up and walked ever so slowly with the respiration therapist and our nurse down to the parent room. I followed.

Our family and photographer waited in the family waiting room.

We got into the room and I again took my baby boy into my arms. For awhile the respiration therapist kept providing his breaths as we sat there in silence just drinking our son in. Then it was time.

They removed his breathing tube and for the first time we were able to see his entire beautiful face. The nurse and the therapist left the room. I wish I could fully describe the feeling in the room - we were literally surrounded by angels. I know we were. There was this comfort, peace, and presence that was so...overwhelming. It was like being in a cloud. I know without a doubt we weren't alone.

We sat there telling Freddie how much we loved him, that we were grateful he chose us and that we were able to spend a week with him. We told him that we knew he must he important to only need to come to earth for a short while and that we would make it back to him someday. Fred told him how proud he was of him and that he couldn't think of anyone better to carry on his name. He told him how we hoped he would never leave us and that we would be able to feel of his presence often. 

We watched as our son's heart beat slowed down and at 11:05PM we felt it as his spirit left his body. I have never felt that way before - we were sustained by a feeling so powerful and comforting that we couldn't be sad. We could only smile because our son was home. He free of the pain and struggle that he had faced and he was whole. We knew we would see him again. 

After a few minutes of holding him close, feeling the presence of angels, and trying to absorb everything feeling, impression, and emotions - Fred went to get our family. 

During the next couple hours we held Freddie, bathed him, took pictures that we would forever treasure, and dressed him in the smallest outfit we could find. 

Around 1:30AM, we said goodbye to Aubry and Hillary. Then to my parents and sisters. We gathered the rest of our things, signed some paperwork, and went home.  

I cannot begin to express my gratitude for Aubry and Holly. Both are amazing phoenix photographers that were so kind as so donate their time and talents to come take pictures that mean more than anyone could ever know. We've been so blessed during all of this by the love, support, and kindness from everyone around us. We cannot thank everyone enough. While this may have been the end of Freddie's earthly journey, in the week that he spent here with us he impacted many lives and was loved by many. 

We are so grateful to all the nurses we had at St. Joes. We were lucky to have some amazing nurses, many of whom had lost a child of their own. I truly admire their strength to work somewhere like the NICU - I couldn't do it.

We are grateful for the Gospel of Jesus Christ. For our testimonies of eternal families and the Atonement. This trial is one we believe no one should have to go through this because of Christ's Atonement we are able to. We believe our family is eternal and we will see our baby boy someday. We are grateful for the Spirit we've felt so often during this because without our knowledge of the Gospel and our faith, I honestly do not think I could live through this. 


Abbey said...

I have tears streaming down my face. Those pictures are so amazing. What a treasure. Its such a blessing we have to know you will be with him again. He is perfect.. And you are beautiful! Love you!

Sydney said...

Oh sweet sister, I can't even imagine the courage it took for you to write this post. I was there and reading your words has brought a string of emotions back. I too felt the angels and the calm peaceful feeling that was in that room. It will be a day I won't soon forget.

Baby Freddie was indeed a spiritual giant called home to continue his mission. His spirit was strong and I have no doubt he's going to watch over you and Fred until he meets you again.

Love you Sis.

kate said...

yep. i'm bawling.

you described this so beautifully, that i've got goosebumps.

i'm so happy you had time with your sweet boy before he returned to his father in heaven.

Chelsie and Trace said...

Chana thank you so much for telling us your story and everything that you two have gone through. I have been crying thinking about you guys and in reading your post's. He is such a perfect little boy. I know we don't live close but if you need anything let me know.

Caro said...

You guys are the perfect family. I cant stop thinking about you.

The Millers said...

You are incredible. I feel so blessed to read your words Chana.

Haley Reay said...

I love you.

Curt, Lace and Harper said...

You are an incredible strong faithful women. Your posts have been so beautifully written. Thank you for sharing your's and Fred story. Your pictures with little Freddie are so beautiful. Again Thank you for your testimony. Also the sweet reminder of Eternal Families. Love Ya and wish you the best!

Kati said...

These pictures really show how tiny that beautiful baby was! It is so hard to comprehend a 1 lb. 3 oz. baby. These pictures are beautiful and will certainly be priceless to you both.

I wish you would have had a better experience with all of the professionals that were working at the hospital. I think that sometimes they just have no idea how big of a part they play in these situations. To them, it is just another day on the job. To you...this is your life. Your whole life. Fortunately, your wonderful family was there to pick up the lack of kindness and help you through. Good nurses and medical staff are truly a blessing...and I am so glad you had a wonderful nurse to help you through that last day at the hospital. I look forward to "her post"....

What a beautiful story of faith, hope and love. You are a beautiful mom, wife, sister and daughter. I have no doubt that you were chosen specifically to have this beautiful baby boy.

Thanks for sharing your story to remind us all of what is truly important in this life.

Karamie said...

Thank you for sharing this, it has truly touched me! I've cried many times while reading your posts. I hope you feel that very special spirit with you in these next months as you get back into life and I want you to know I have been so touched by the way you wrote your story here and how you dealt with such a very hard trial. You have been on my mind a lot and I pray that you will continue to feel peace. You are an inspiration to all!

Kate said...

I also have tears streaming down my face. Thank you for sharing your story Chana, you are inspiring and amazing and I admire you! I imagine it was extremely difficult to write, but it has truly touched me and reminded me of what's most important in life.

Your sweet family pictures are beautiful, you can see and feel of all of your great faith, love and courage. They brought a smile to my face and peace to my heart as I looked at them. What a special and sweet boy Freddie was, and what a lucky boy to have you both as his parents. Thank you for your examples!

Stan & Ash said...

Those pictures are amazing!
My mom lost her baby girl when she was 1 and a half to a liver disease. Every year we run race called running with Angels at thanksgiving point. It is such a beautiful way to remember her and so comforting to be surrounded with people who have felt similar pain. Maybe someday that will be something you would find peace I doing.
He is a beautiful baby and I am so happy for the time you were able to spend with him and the peace you were Able to have surround you.
Your amazing. Love you

Amanda said...

Oh Chana, I don't even know what to say.... I want to give you a hug. Thank you for your story. The way you describe everything really is incredible, you tell it so well. I could feel a great spirit just reading, I can't even imagine being there, I am so glad that you were that comforted. Thank you for sharing your testimony too. You, my dear, are amazing. Really. Amazing.

Zoë Smith said...

Here it is more than a year later. We are unknown to one another yet still part of the fabric of humanity. I grieve for you and your loss and hold the thought dearly in my heart that each day brings you peace and healing.