Monday, April 25, 2011


It's hard to know where to start for this part of the story. This was one of our hardest days or perhaps the beginning of hard days.

When we called Thursday morning, the nurse told us that Freddie had had a rough night. His potassium levels were high so they had started him on a new medication to get them under control. The worry with high potassium levels is that it can lead to cardiac arrest. After hearing this we kicked it into high gear to pack and get ready for a week stay in Phoenix.

We hurried to the hospital and when we made it to Freddie's bedside the worry was mostly under control. His levels had dropped - and we felt relief again.

Of course there was still plenty to worry about. Our little man required a lot of support to stay at his critical but stable status. He had changed to a different ventilator that constantly stimulated his lungs though he needed almost no additional oxygen. This new ventilator was loud and made his body constantly vibrate - but he liked the stimulation.

That afternoon, they did a head ultrasound. They had found some blood in Freddie's urine and in most cases, with babies if there is blood in the urine its an indication of bleeding in other places in the body. The doctors had done a head ultrasound on Wednesday but it came back inconclusive so they wanted to double check.

Hours went by without so much as a cause or reason to worry in addition to what we were already doing. We were never rushed out or moved to assist our little guy. It was just a "regular" day.

Fred's parents and his sister Mandy and her family arrived from driving straight through from Arkansas. so we spent the day rotating through all of us sitting next to Freddie (only 2 were allowed at the bedside and 1 person had to be parent).

Toward the end of the day, our nurse told us that the doctor wanted to talk to us as soon as she was done with one of her other patients. Still no worry.

We waited next to Freddie and our doctor walked right past us.We were slightly confused but didn't think much. A couple minutes later our nurse came and told us that the doctor wanted to talk to us in her office. Dread immediately hit me. Doctors don't pull you into their office for good news.

We walked with our nurse back to her office where our doctor and social worker also were. Another bad sign. As we sat there, our nurse walked away and came back with a box of tissues - bad sign number 3.

Our doctor showed us the scans from Wednesday. It was easy to see how there could be confusion as to what was actually going on and therefore little to be worried about. She explained that there were indications of possible brain hemmoraging but nothing definite. She told us that bleeds in the brain were classified into 4 stages. Stages 1-2 usually caused little damage but stages 3-4 caused severe damage and even death.

Next she pulled up that day's scans. Immediately we could see the difference. What was an empty space in the ventricals the day before was now completely saturated with blood. The right side of the brain was so full of blood that it was pressing into the left side. It didn't take a medical degree to see the damage. It was devastating. Our doctor pointed out several things and then took us back into the parent room. We sat down and they began telling us about the damage and what it meant for our little boy.

Our perfect, tiny little boy had a stage 4 hemmorage. Because the bleeding was in the brain there was nothing they could do to reverse it, drain it, or make it better faster. They couldn't do anything but let the body drain it on its own. The damage was irreversible and we were told that Freddie had a 95-98% chance of being severely mentally handicapped, would most likely never walk, talk, or do anything for himself, and they told us that he would almost positively have cerebral palsy. And that outcome was ONLY if he was to not have any additional struggles. that was his best case scenario.

They began talking about outcomes, quality of life, DNRs, choices, survival, and a million other things. We couldn't even understand what they were saying. We knew they were asking us something but we couldn't understand the question. We were given a choice. A choice no parent should ever have to make. Would we chose to put our child through months and months of struggle, pain, tests, and hope that he survived - knowing that if he made it through the NICU he would have cerebral palsy and severe disabilities.

Or would we recognize the Lord's plan and allow our child to return home to heaven after completing his short journey here.

We sobbed. This wasn't the way our story was supposed to play out. We were supposed to take home a healthy miracle baby that would beat the odds.

While our doctor was hoping for some kind of decision at that moment, we couldn't give her one. They left us and we continued to cry as we prayed for guidance in what we should do.

We had our families come in and they could immediately tell the news wasn't good. I couldn't look at anyone as they entered the room so my mom immediately rushed to my side and began to cry. We told them what the doctors said and we all cried.  We prayed together as a family and both Fred and I received blessings. I can't describe the feeling in the room - there was the complete and utter dispare but at the same time there was this feeling of comfort and peace. Our parents told us they would support our decision - which ever one we made. We were grateful for this but at the same time I didn't feel qualified to make this decision. I felt like a child - not old enough to do anything for myself, let alone make a decision about the life of another.

When we finally composed ourselves, we emerged from the room and went to sit with our son. When I sat next to Freddie, I couldn't keep it together. How could something that looked so perfect on the outside be so broken on the inside? It couldn't be possible. He reacted to our touch, to me tickling his feet, to our voices - how could he have such a massive brain injury?

I remember that I asked our nurse, in broken sobs, what would happen if the bleeding was gone the next day? What if it healed itself? Her answer was - the damage is done. Even when the bleeding stops, the damage has already been done and there is no fixing it. These words broke my heart.

I think we immediately knew what we had to do but we couldn't vocalize it. How do you say those words out loud? We couldn't do it. We prayed the decision would be taken from us because we weren't sure we could actually say goodbye on our own.

Every night at the NICU the nurses swapped from 7-7:30 so we were kicked out. When we went back in after shift change, the entire mood around Freddie had changed. That hope and optimism that had surrounded him over that last couple days was gone. Replacing it was this awkward tension as though all the nurses and staff were staring at us knowing what Freddie's future held. The hope and smiles were gone - instead there were sympathetic looks, avoiding eyes, and hushed whispers.

Our night nurse approached us as we sat at Freddie's incubator and said, "I'm sure you're up to date on the latest and I heard you heard the bad news" (sympathetic smile) This immediately causes me to break into tears (aka sobs) and she walks away.

In my head I was thinking, yes I know some "bad news" but what "bad news" are you talking about? What are the rumors about my son?

That night we had our bishop come out to offer us some kind of guidance. We told him the prognosis, introduced him to Freddie, and he told us that he felt that there was no right decision. He said that the Spirit would guide us to make the right decision and therefore we couldn't make the wrong one.  When he left we felt additional comfort and peace - yet the same uneasy feeling that WE had to make this decision.

The hospital then gave us that parent room for the night. We were relieved they allowed us to stay in the parent room. After hearing the news about Freddie I couldn't bear to leave him. I needed to be next to him talking to him, telling him how much we loved him and were proud of him. I needed to be singing his favorite song, Forget You (the Glee version), tickling his feet, and making him hold my hand - even when he didn't want to.

We stayed in the NICU until almost 2:00 that morning when I finally pulled myself away to force to get some sleep rest (insert praise for sleeping pills).


kate said...

man. i'm bawling and i'm at work. i knew i should've waited to read this until later.

you are amazing with words, chana. i know this must be so hard for you to write down, but i'm sure one day you'll be thankful to go back and read your thoughts.

love you lady!

The Millers said...

That is not a decision a parent should ever have to make. I cannot believe what incredible strength you both must have to have endured this. I'm so glad you felt the comfort of the Spirit during that time and I hope you continue to feel it in the future.

I'm sending you all my love and hugs!!!!!

Lacey said...

Thank you for sharing your story. It is the most heart wrenching thing I've ever ever heard. I wish I could just come give you a hug.. You guys are amazing

Chelsie and Trace said...

I too am at work and bawling I too again should have waited to read at home.
You two have some strength that I don't think I would have. I'm glad that you had family there with you as well as the comforting feeling from the spirt I know that helps in these very hard days. Still thinking about you, love ya!

Brandon and Amanda Brady said...

I love that his favorite song is "Forget You." Classic Glee. Reminds me so much of you!! Takes after his cute mama! So sorry you had to be left with this decision.

Amanda said...

I'm the same as those other two, I'm not at work per say, but I do have a client coming over any second and here I sit, crying and hurting for you guys. I know I'm not the first to say this, but thank you for telling your story Chana. My heart goes out to you and Fred. I think and pray for you every day.

Karamie said...

I'm in tears! Wow, I cannot imagine how hard that day and the hours to follow must have been and still are! You are in my prayers! Thank you for sharing this extremely tender experience with all of are amazing!

Anonymous said...

Chana, I've been wanting to call you, but I know I will just bawl and bawl to you. You guys are so strong, and I'm so sorry you've had to go through this. I'm so thankful for your eternal outlook and I know you'll get through this. Love you. Amber

erica said...

ou are an amazing momma! I couldn’t help but cry and love this little baby through reading how much you love him. Again your faith continues to amaze me. You are an example to me of true unconditional love of a mother! Reminds me not to take any moment for granted! Thank you again for sharing your story, it breaks my heart but also strengthens my testimony as I read about what faith you and Fred have! Hang in there Chana!

anne said...

My Gift

Of course you’ll get a gift from me this year.
You won’t know the size or color or shape of this gift,
but you’ll get one just the same.
Its price won’t matter
because my gift shows in a small way
that you and your life are most important to me, my life, my happiness.
And, if by chance,
another receives a larger, brighter, more costly gift than you,
it does not matter. . .
What does matter is The Gift.
And giving. Knowing . . .
The Gift to man is life.
Your life will not be the same length as mine.
Who is to say his Gift should have been different.
This Gift . . .Life . . .
Only He who gives knows why one may be longer or shorter.
Your Gift will be different from mine.
We would not wish for the same . . .
The Gift is given.
We receive
The Gift.