no catchy title here...

Sunday:
This was the first day where just the two of us had the opportunity to just sit with Freddie as long as possible. Fred's family had left, my parents were at church 40 minutes away so we just sat as our little family in the NICU.

As we sat there in the morning, we noticed that Freddie's neck looked...thicker. I noticed it but thought that maybe it was just the position that they had him in that made him look that way. A little while later, the nurse asked if we thought his neck looked thicker. His neck was swelling up which made his tiny chin disappear and made him look like he had a "gobbler". His neck was literally almost the width of his tiny shoulders. They did an x-ray and discovered that his PICC line was going up into his neck blocking the drainage of any fluid from his neck or head.

Mr. Thick-Chin

They had to go in and pull the PICC line out a little to see if it would make the swelling go down. After they pulled it out a little they would look to see if he had any other viable veins to put in another PICC line. The doctor on duty that day told us that if the swelling didn't go down and they couldn't find another vein that potentially this could be the beginning of the end. He was at great risks for blood clots and the only way for them to get blood clots out of the neck was to give blood thinners - but because he was on such high dosages of blood pressure meds he wasn't a candidate for that.

after the neck went down

Unfortunately, the nurse blew the one vein he had left so a new PICC line wasn't going to work. Luckily though the swelling went down pretty rapidly.

Monday:
Fred took a much needed afternoon away from the hospital. He had to finish up some school stuff so after he left I barely left Freddie's side. literally. I was exhausted and I couldn't sit at his incubator without touching him somehow - usually with my hand cradling the top of his little head. Poor Freddie. He was probably so sick of me. Plus his little incubator was hot with ample humidity - so he was stuck with his mom's sweaty hand on his head, chest, foot, or trying to hold his hand all day.

I sat there as the parents of the other babies in the pod came and went, I rested my head against his incubator and told him it was okay if he needed to go. That we loved him so much and were so proud of his fight but that we knew the plan and he shouldn't hold on if it was his time.

Monday evening as I sat next to Freddie, the group of doctors came around doing rounds. I hated when they did this. It was awful - like being on an episode of scrubs or greys anatomy. Yes please sit and talk about our baby's grim future as though his sobbing, emotional, and human mother isn't sitting right there. No, please. When they came around was my time to take a break so I wouldn't have to hear it.

After the group of greenies left, the director of the unit and the doctor on duty that night approached me at Freddie's incubator. They began asking me questions on our decisions, feelings, impressions from the other specialists, etc. I told them what the other doctors had told us but that we weren't ready to make or vocalize a decision yet. The doctor on duty then said something that really made me realize that we really were on borrowed time and that Freddie was hanging on because WE wanted him there.

She told me that while they didn't want to pressure me and that they would continue giving him the best care possible - that we only had a window of time to make this decision. He had graduated from one ventilator to another and that while he still required a lot of support, if he kept progressing with his breathing and lung abilities (which could happen within a week) he could be taken off the ventilator. Once he was off the ventilator, the decision was no longer ours. Once he was breathing on his own - we had made our choice and that was the life we'd chosen to give him.

I started sobbing. This was the first time anyone had mentioned that time was running out. We knew that wasn't the life he was to live. We had received confirmation that his time on Earth was to be short but we also didn't have the power to say goodbye yet. Every day we were with him made it harder and harder to make that decision. We were so in love with this baby and of course we didn't want to say goodbye. In our heart of hearts we were still hoping for a miracle.

Fred got back and came in to sit next to Freddie to make up for all the lost time that day.

My parents had been there all day but decided to get out and go "get grapes" (my mom is bad at lying). When they came back, my two sisters were with them. My sisters had flown in from Utah to meet Freddie. They would be there for the night and then leave in the morning. As the night progressed and I told everyone about the conversation I had with the drs. We knew we would ultimately be making some big, hard decisions the next day. Because of this, my sisters changed their flights to leave Tuesday night instead.

That night we took turns in next to Freddie, snuck away to dinner, and skyped with my brothers and their families so they could meet our little man too. (sidenote: how cool was it that we were able to skype with Fred's fam and mine so that they could meet our babe? answer: extra cool)

Fred had to take a few finals the next morning, so he went home to our house to sleep. I had pretty much decided that if Fred wasn't there, I wasn't sure I could sleep so  I would probably just sit in next to Freddie all night. Which was fine by me - I was invincible. I didn't need sleep and I definitely didn't need to eat. Instead of leaving me alone, my little sister opted to spend the night with me while my older sister took the hotel room. We stayed with Freddie until about 2:00 AM and then went to get some shut eye.

postscript: I feel like there is so much I'm leaving out. I hate it. I hate not being able to capture every moment through this blog to remember what it felt like. These posts are getting shorter - which I'm sure some are glad for - but for me it means I'm leaving things out. Which breaks my heart and brings tears.

One Month

Today would have been Freddie's one month birthday.

Happy Birthday baby boy. 

We love you and miss you more than you could ever know. 

I hope they have birthday parties in heaven.

Another Point of View

The photographer, Holly Brimhall wrote an amazing post about her experience in the NICU with Freddie. The mother in me sees it as bragging rights for my child - so everyone should read it.

My baby is and was amazing. Someday you'll all get to meet him.

Click to Read Holly's Post

Saturday

When I was home in February for work, I was at my sister's house. She had shown me Holly Brimhall, this photographer in Mesa that took ah-mazing newborn pictures. I fell in love. Because she was so talented and amazing, she was also out of my "we're broke" budget. But I looked at her site regularly, followed her blog, and dreamed of the shots I would take with my little baby.

Fast forward to the present - our nurses had talked to us about the organization Now I Lay Me Down To Sleep and while I couldn't think of setting something like that up because it broke my heart, my mom and sister took matters into their own hands. My sister contacted Holly and without hesitation Holly offered to come and take pictures for us. That Saturday, she drove more than an hour to take pictures of us with our little boy.

Saturday was a big day. 

In the morning, I followed the same routine - wake up, throw my hair back, put on my flip flops and head into Freddie to say good morning and sit for a little bit before being kicked out at shift change.

I hated that we were doing pictures because I knew what it meant in the long run. However, these pictures are now something we'll treasure for the rest of our lives.

In Freddie's journal I wrote:

Today we did a photoshoot with you. You did a great job. I couldn't stop holding your hand all morning so you were a little sick of us trying to hold your hand for pictures. The nurses were so great with helping us. They opened your bed and we got to pick you up. This was the first time we got to hold you in any way. Because you're on a special ventilator, we could only lift you about 3 inches but those 3 inches meant the world. You're so tiny that you can fit in your daddy's hand. Our favorite part about about doing pictures was that we were able to kiss you. After 4 long days, we finally got to kiss your sweet little head. You are so sweet baby boy. Even the photographer could tell you were a special spirit and cried.

We know you are one of the very best of God's children and we are so lucky you chose us to spend your earthly time with.

Tonight you were quite the popular boy. So many of our friends came by to meet you. So many people love you. 


Tonight your daddy also gave you a blessing and named you for our Church. He gave you the most beautiful blessing - He loves you so much.


Both of your grandpas and your uncle Matt stood in the circle to bless you. I know that if you are to be whole, you will be. But if your mortal journey is done then that's okay too.

Toward the end of the photoshoot, Freddie got the hiccups. Something I never got to feel while he was inside of me. I just sat there crying with my hand on his chest amazed that something so tiny could have something as normal as the hiccups and that something so normal could be something I wanted to hold onto forever.

Three generations of Freds

After Freddie's blessing, we had to say goodbye to Fred's family who had to make the 19-hour trek back to Arkansas. It was probably one of the hardest goodbyes. As I sat watching everyone say goodbye to Freddie I couldn't help but sob. Our nurses were great and kept his bed open so that everyone could touch and kiss him. I didn't want to accept that this would be the last time they got to see him in this life. I didn't want to face that when his parents came back in 2 weeks for graduation that we wouldn't still be there. fighting. But I knew we wouldn't be. 

Friday

The next morning - I was wide awake at 6:00 AM and in next to Freddie (PJs, unbrushed teeth, crazy hair and all). I stayed in there until the shift change and then force myself into the shower to be semi presentable. The mood was still the same. There was pity and sadness in everyone's eyes yet hardly anyone would look me in the eyes. I guess I couldn't blame them - I was a wreck. I would pull it together just in time to start sobbing and crying again. Our nurses learned to have a box of tissue on each side of Freddie's bed because I needed them. The other parents of the other babies in his area barely looked at me - again, I couldn't blame them and I wouldn't have wanted to talk to them anyway.

Fred on the other hand was exhausted. Every day the emotional and mental strain had him ready to sleep for days. 

We were so lucky to have our families surrounding us. Our parents took care of things we couldn't, got us food when we didn't know it'd been hours since we'd eaten, and hugged us, listened to us, and cried with us. It made such a huge difference to have both of our families there.

Friday was just an all around bad day. Nothing monumental happened with Freddie but it was the knowledge of what we knew that kept us in tears.

We had been told about the organization Now I Lay Me Down To Sleep, a group of photographers that comes in and takes pictures for parents of a terminal baby at no cost. We had decided we wanted pictures but weren't ready to actually schedule something. If we scheduled something it meant that we had made up our mind and that the end was near. My mom and my sister had gone behind my back and contacted a local photographer that I loved and though she wasn't part of the group, she had volunteered to come do it. My mom had scheduled her to come that night. When she told me this I broke down (in the NICU mind you) - told her I couldn't do it and that we wouldn't do it that night. Thankfullly she was okay with us cancelling last minute.

We battled with the decision and tried to figure out if it was selfish to keep him and hope - because after all everyone was praying for him and aren't prayers answered? My mom reminded me - not all the prayers were to help him heal, but to do God's will and help us be strong.

What if our child was meant to be an example to others in this life while in that state? If we chose the wrong thing - was it because we couldn't handle it? Not because he couldn't?

Friday afternoon, a neurologist came to talk to us to offer a second opinion. Fred had left to go check on school things at the hotel so Fred's mom and sister sat with me as the doctors talked more about outcomes.

When they left, I felt strangely comforted. As though things weren't as bad as they seemed. The neurologist had said that based solely on his brain injury, he would at the very least be completely paralyzed on the left side of his body and would most likely suffer from stiffening (when your arms curl back into your body). He said they couldn't be positive of the mental damage and that he wouldn't walk but that there was a chance (however small it might be) that the left side of his brain would take on the role of speech and he might be able to talk. They said they were having a neuro surgeon look at his scans as well to look for hydrosphylis which causes cerebral palsy. This was all I heard. At the end of the conversation there was that awkward pause again. The one that indicated that a question had been asked and that I needed to provide an answer - but once again I didn't know what was being asked or said. I couldn't give an answer.

When they left, my MIL and SIL looked at me with sad eyes. I told them how I felt like things weren't as bad and that maybe we should go for that tiny glimmer of hope. Both my MIL and SIL shook their heads - unlike me they were able to stay focused and listen to what the doctors were actually saying. What they were actually saying was "this is really bad - your little boy's body is failing and it doesn't look like he's going to make it. If by some miracle your baby does make it - he will be severely handicapped."

oh. that's what they said?

Luckily my MIL was in there because she was able to grasp the question that was being asked. They wanted to know whether or not we wanted them to do everything in their power to save him if things started to crash. They had told us previously that doing chest compressions on him would do more damage than good - so I knew that was something that we didn't want them to do. My biggest concern was that he was to be in no pain or discomfort.

That night, Fred made me leave the hospital to go to dinner with his family. We went somewhere within five miles of the hospital. The minute we sat at our table - I began to have anxiety. My whole body began to sweat, I couldn't stop moving for fear of having a full blown panic attack. What if something happened while we were gone? I wasn't going to eat though I'd ordered something so at one point I thought 'I can't stay here. I'm going to get a taxi or run back to the hospital if I have to'. It was the longest 45 minutes of my life.

I pretty much ran back into the NICU when we got back to the hospital - and then couldn't leave Freddie's side for hours.

We decided that night that we wanted anyone and everyone to meet our little man. Everyone deserved the chance to meet a perfect child and to feel of his presence and God's love. I think if we could have we would have taken him on tour - he was that amazing.

A little video of freddie's toes. Ignore the sobs.

That night, at 11:30 we were back in our parent room (beginning to feel like permanent residents). I was writing in Freddie's journal, Fred was watching tv. There was a knock on the door and there was the neuro surgeon. He and our nurse came in and he preceded to tell us that he'd looked at Freddie's scans and that there weren't any signs of swelling yet but that most likely there would be. He told us all about "chances" and that at the very least Freddie would have developmental issues. What does that mean? He'll read at a 3rd grade level in the 6th grade? Because we can handle that.


Once again, my mind began to wander. I didn't hear anything he was saying. I began thinking things like: why is he wearing a surgical cap? Did he just come from surgery? Why is he here so late? Oh he isn't wearing a ring. Maybe I could set him up with someone?

After he left, Fred looked at me and said, "if I hear the word chance one more time I think I'll punch someone." It was true. After the first meeting with our doctor who had been harsh but realistic, all we had heard from other doctors was that there was a chance for this or a chance for that. We both had wanted to scream.  At what cost do we hold out hoping that one of the chances worked out? How long do we put our baby through this just hoping he survives?

We went back in to sit next to Freddie for the next couple hours. Sleep meant nothing to me - it was merely something the nurses and my family told me I needed to have. But what did it matter? Soon I wouldn't be able to sit next to my baby at all.

Thursday.

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).

A Blur

Tuesday
When we got to St. Joseph's, we found our little boy and didn't leave his side. The mood around Freddie was extremely positive. We kept hearing things like "it'll be a long, tough road but he'll make it - and so will you" and "Take pictures every day because when you take him home you'll be amazed at where this little man started".

We were overwhelmed and worried but felt nothing but optimism.

Freddie was extremely active when we were with him. He was punching and kicking non-stop - movements I recognized. Movements that I should have been feeling...not seeing. He had these huge feet and extra long skinny fingers.

The nurses were incredibly supportive. The staff took us into a parent room and told us it was ours for the night. We sat in there trying to gain some footing as to what the next four months of our lives would be like.

We sat on the bed in complete and utter exhaustion. We had someone from the March of Dimes come talk to us and left us with even more hope about how great our little man was and how we would fight this battle until we took home our baby boy.

At around 11pm, my parents walked through the door. We took them back to meet little Freddie, at about 1am it was decided that there was no way I was going to get any sleep in that room and it was best just to drive the 40 minutes home.

Wednesday
The next morning, we woke up tried to take care of a little business like making sure my work projects were handed off, that little Freddie was listed on our insurance, and that Fred was covered with school and work. Fred's mom called to say they were leaving soon and would be there the following afternoon.

We packed up some snacks, clothes, and journals to head right back out to the hospital.

Freddie had had a rough night but we still felt like there was nothing to be worried about. He was critical but stable. He needed help to breathe but didn't need much oxygen. His blood pressure was really low so every time they took blood for tests they had to give him a transfusion (approx. 6 cc's) and he needed the assistance of 3 different blood pressure meds. He was being pumped with all sorts of medications that he looked pink, healthy, and plump.

Because of his traumatic birth experience, he was extremely bruised and battered so he was under the billirubin lights to decrease his bruising.

We took all of this in stride because again, there was this optimism surrounding him from us, his doctors, and his nurses.

We met with a social worker as well. We were told that we may qualify for the Ronald McDonald House and be able to spend some time there instead of commuting the 40 minutes each way - every day. Our social worker was nice, but cold. She was very matter-of-fact, to the point, and lacked any degree of compassion. When we first met her, she approached us in a way that was like "well? what do you need me for?" to which our answer would have been "um. we have no idea. We've never done this before - what do we need to be doing?"

Her gold star moment was that she was able to get us a room at the extended stay hotel (directly behind the hospital) for a week from a private donor. After the week expired, she would see about renewing it or look into the Ronald McDonald House. We would have to spend the night at home again but then we would have the room starting the next day. This was a huge relief as driving back and forth to our house was going to get expensive and time consuming. Not to mention that if something went wrong during a time we weren't there, it would take us at least 40 minutes to get to the hospital.

We sat next to him pretty much the rest of the day - taking turns only to rotate the 2 allowed back there. We left the hospital only to eat dinner and then to finally head home at the end of the night.