Thursday, May 26, 2011

Freddie's Graveside

On Saturday, April 23rd we buried our baby.

We held a graveside service for our son, inviting only close friends and family.
It was windy. cold. and not sunny like the weather had promised.

My dad conducted and spoke briefly about our son and the Savior, my best friends sang Families Can Be Together Forever, Fred spoke, my sister Sydney read a poem, we all released balloons in honor of Freddie, and Fred's father dedicated the grave.

It was perfect.
I wanted to share the talk Fred gave. He did such an amazing job and I know our little boy was there and was so proud.

It’s hard to know where to begin in speaking about Freddie’s short journey here on Earth.
As parents, we all want the best for our children. For us, the best for Freddie involved the hardest decision and heartache ever imaginable. We had faith the Lord had a plan and the faith to follow our promptings as hard as it might be.

We were so blessed to be able to spend a week with our perfect son. To have precious memories to hold on to of his sweet personality. We wish that everyone was able to meet Freddie. He had a spirit about him that was indescribable. At 23 weeks, he was born this tiny, perfect baby. He had long bony fingers, HUGE feet, eyelashes, Chana’s chin, my ears, and a good sized Taylor nose. He was born bald but by day 5 he had fuzzy hair and a unibrow. He was beautiful.

There was nothing better than sitting beside him with his tiny fingers wrapped around yours. He was always willing to hold your hand until you wore out your welcome – at which time he would quickly pull his hand out of yours and NOT give it back. Chana’s favorite thing was to tickle Freddie’s big feet. He immediately reacted by pulling his feet away, spreading his toes, and scrunching his face in annoyance.

We once fought over the duty of changing diapers when the baby came – however when our story changed and we were given the opportunity to change his tiny diaper a handful of times it was something we almost fought over to be able to do it. I never thought I would be excited or come running to change a diaper.

Holding our son was the greatest moment of our lives. How something so small and almost weightless could capture your heart so completely was amazing.

The final moments we had with our son only solidified our testimonies of the Gospel as we could feel the comfort and peace of Heaven surrounding us. We knew this was part of God’s plan and that our son had an important mission to complete in Heaven. As one of God’s most valiant sons, he had only needed to come to Earth to gain a body. We are so grateful he chose us. This little boy has changed our lives and the lives of so many others in his short journey.

We know we will see him again and that we will be able to raise our perfect son. In the meantime, we have a guardian angel watching over us, preparing our future children, and serving valiantly in Heaven.

Freddie – Thank you for picking us. We love you more than words could ever convey. Thank you for your perfect example. We will be working hard to make it back to you. We pray that you will always be with us. We hope you’re telling your brothers and sisters how great but sometimes annoying we may are and that you’ll watch over the rest of us.

We are so proud of you and your perfect example. We’re proud to be your parents.We couldn’t ask for a more perfect son to carry on my name.

Fred Joseph Wald VI you will be missed, celebrated, and will always hold a giant piece of our hearts. We know we will see you again and can’t wait for that sweet reunion.

We love you.

We cried because we miss our little boy. We smiled because we have memories of our week with him.
We know he's safe and whole and most importantly happy. We know we'll see him again.

Monday, May 23, 2011


Life is hard. No one should ever have to go through this trial and I wouldn't wish this pain on anyone. I know that I couldn't get through this without a number of things - the support of our families, friends, and even strangers, my testimony of the Gospel, and Fred.

Fred has truly been my rock during this. We're both grieving beyond belief but Fred is the strong one. The one who holds me when I sob (only grimacing slightly when tears are mixed with boogers), who tells me I'm beautiful when I haven't worn make up in weeks and I look like I've aged 40 years and been hit by a truck (to which he says "no, not a truck. Maybe just a mini van"), and who tells me over and over again how we're going to be okay and that we can do this because we're not alone. He is constantly taking care of me whether it's finding someone to come check on me during the day (because being alone is the hardest), bringing me a sonic drink, or surprising me by having one of my good friends Emily come do my nasty hair the night before Freddie's graveside (because he knew how gross I felt with 4-inch roots).

On April 21st, we were able to celebrate a little despite everything that has been going on.
Fred graduated from school! Fred is the first in his family to graduate from college. Ever.

Our lives were turned upside down just a week before finals and his graduation. He was able to keep it together to finish school, take his finals, and graduate. I'm so proud of his accomplishment and hard work. He worked hard to graduate as one of the best in his class.
Fred and his older sister Mandy
Fred and his proud parents
Fred and his hot wife

I wish I could find the words to express how grateful I am for him. We've grown more in the last few weeks then in the last few years - He deserves credit for keeping me sane and for any strength that you think I may have.

Friday, May 20, 2011

Tender Mercies

I wrote this the day after Freddie's passing. Instead of changing all of the language to seem as if I wrote it today I decided to keep it as is.

Before all of "this" I never fully understood what a tender mercy was. They talked about them all the time in conference talks and at church but honestly I had no idea what they were talking about. However, after the week we've had there have been so many tender mercies from the Lord and I finally know what it means.

I wanted to share a couple instances that meant so much to us.

Before last week, we hadn't planned on delivering with my OB or in Arizona at all. We've wanted to move back to Utah for the Summer so that we could be closer to family when the baby came and Fred would be able to get more experience with a busier golf season.

Upon going into labor, we found ourselves wishing we were in Utah simply because in our situation we wanted to be surrounded by LDS people. People who wouldn't look at us strangely if we asked to do a blessing or gawk at my funny under clothes. People who would share experiences or thoughts with an LDS perspective, and have compassion knowing what we believe in and how to possibly comfort us.

Not to say that non-LDS people don't do any of those things. Because we know they do...

After delivery, I was assigned a new nurse. We were scared. worried. and still in complete shock that we had just had a baby. My new nurse came in, introduced herself, and told us that soon we would be able to see our little boy. When she was leaving, she said, "Are you LDS?" we said yes. Unsure of where this could be going...She then said "I thought so. I'm LDS too and if you guys would like to do a blessing for you and for the baby that would be okay. We can make sure it happens before they life flight him."

Immediately we felt comfortable and were able to openly discuss what we'd like to happen before we had to say goodbye to our baby as he left for a different hospital.

My nurse was great. She was very supportive and made sure that our priority was to get me out of there as soon as possible so we could get to where our baby was.

After leaving that hospital to basically take residence at another, we constantly wished that we had an LDS nurse, social worker, or doctor. We were surrounded by professionals all week that didn't seem to have the compassion or faith that we did. They were all wonderful but very matter-of-fact and blunt in regards to our situation. There was less about the after and more about the death, which made everything even harder.

Tuesday, April 12th, was our hardest day. We knew the decision we had to make and dreaded it. About half way through the day (after our meeting with the doctors), our nurse Kerri approached us at Freddie's bedside and said, "I noticed you guys were LDS. I am too. I also lost a child - so while I can't imagine what you're going through in this situation. I do know the pain of losing a child. Can you imagine going through this without the knowledge that we have?"

We immediately teared up and felt a huge comfort. Through tears I told her that we had been praying for her. We knew that she was meant to be our nurse especially on that day. Kerri spent a lot of her time that day talking to us about her experience losing her daughter 20 years before and how her testimony has grown since. I know that she was inspired to tell us the things she did and while she even said that she hoped what she had to say helped in some way, she helped us in ways she may never know.

One thing that she said really touched me. She said that when she went through her similar trial, she felt as though she had a choice. To let this define her in a way that made her bitter, angry, and different for the rest of her life or she could use this experience to shape her into a stronger person, mother, and wife and allow the atonement to take her burden and make her a better person. She chose to move forward to be a better person. She said that even 20 years later it still made her cry but that the more she talked about it the better she felt. She said that someday we would be in the situation where our story would be one that touched someone else's life.

I am so grateful for the all of the tender mercies we've received and continue to receive. This is something that we will never get over - but that is the beauty of it. Little Freddie has changed our lives, and we are being molded into what we hope will someday be stronger versions of ourselves. This trial is one that no one should ever have to go through, we hope that someday we can help another family in some small way.

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. 

Sunday, May 15, 2011

Tuesday (Part 1)

I'm already dreading writing this post. As I was looking through my posts, I was hoping that I had already written this. No such luck. There is this indescribable pain and peace that I have writing this. I would give anything to have our circumstances be different. To have a baby that was still inside me, or even fighting with an excellent prognosis in the NICU. But that isn't our story.

As usual I woke up and went right in to see Freddie. When I went in, they were doing his head ultrasound. I didn't want to see the images right then because I knew we would be pulled into an office later that day. I stood back until they finished and then went to do the usual - sit next to Freddie until shift change.

The nurses in the NICU did 3 days on - so we'd had only a handful of nurses because they would typically finish their scheduled days with the same baby. That morning he had a new nurse, she was someone around my mom's age. She kindly introduced herself, updated me on my baby's night, and then stood aside to let me have some time with my baby. I told him good morning, talked to him about the dreams he'd had, and just held his hand.

While the nurses were swapping, I went back to eat the breakfast my older sister had picked up on her walk to the hospital from the hotel and I got "ready" for the day. Getting ready for me meant - get in the shower, sob my guts out while in the shower (hoping the sobs were muffled), get dressed in something that wasn't maternity or if it was didn't look it, do my hair, and put on waterproof mascara. Voila. There is your how-to guide to looking haggard yet beautiful(ly destroyed).

As soon as I was finished getting ready, I was in with Freddie. I wasn't leaving, so my family took turns rotating through. While I was sitting next Freddie, the head nurse for the NICU came up to tell me that our doctor and the team of specialists was planning on reviewing Freddie's scans and then talking to us at 1:30. My heart sank. Everything changed to a count down to 1:30. We knew things weren't going to be better. Or at least not in a way that would save our son from a lifetime of struggle. Yet at the same time we hoped. Hoped that literally by a grand miracle the bleeding would be gone. The damage reversed. That all our little boy had to do was get bigger and stronger and then we would take home a healthy baby boy who beat the odds and was an inspiration to all.

This is where the details of the day begin to get foggy.

I can't remember the exact order of things that morning - only that it felt like days.

Fred had been at school all morning, attempting to clear his head to finish his finals to graduate the following week. He was able to finally get back to the hospital around 11:00. We had been kicked out of the NICU because Freddie was getting a new bed. His current bed had a broken door (where you stick you arm through) the door had fallen off and in its place was a piece of plastic keeping the humidity and temperature up. it broke on his 1st night there but because he was so critical they couldn't move him until Tuesday. Again a tiny victory that made you think hope wasn't lost. While they moved him we had to leave so Fred was forced to just sit. and wait. He could hardly stand it. All he wanted to do was be in there with his son. Finally we got the call saying we could come back in. Fred and I went in and only a little while later we were kicked out again for another procedure on another baby. This time it would be a little while longer so Freddie's nurse made Fred promise to make me eat. We went down to the cafeteria where Fred ate and I picked at his food. My parents and sisters who had been roaming the halls restlessly (my mom literally cannot sit still) came to find us. We updated them on Freddie's new bed and that the doctors would be pulling us in at 1:30.

After the alloted time, we went back upstairs and back inside with Freddie. soon after we were kicked out again. I'm not sure on the timing of everything but while we were kicked out we went back into our room where we cuddled on the bed trying to get 30 seconds of rest in our restless week. As we both fell asleep, someone knocked on the door. I sat up and our social worker walked in. Instead of seeing that we were obviously trying to rest in the spare moment that we had, she flipped on the light and came to sit down at the chair at the end of the bed.

I haven't blogged much about our social worker - she was incredibly cold. She seemed to try and force a tiny bit of compassion but it just came out as "yeah yeah your baby is early and there is no hope". She had had the nerve to talk to me corner me on Friday in the NICU about my "options" (this is the day after we learned our baby wasn't going to make it...the last thing I wanted to talk were those options) and made the point of telling me that she was leaving soon for the weekend so she wanted to tell me before she clocked out. Honestly, I don't think she expected to see us Monday. Then on Monday morning, she stopped by Freddie's bed where Fred and I were both in tears. She had gone to the opposite side of his bed and simply said, "Mind telling me how the weekend went?" in a cold, accusing voice. 

As she sat at the end of the bed, she talked to us about our options again. About what we could do to make our last moments special. There was actually a glimmer of sympathy in her eyes. We talked about how we most definitely wanted a photographer there to capture us holding him for the first time and how I wanted hand imprints if I could get them. As she was telling us about the imprint kit they had, my sister Sydney came in to grab her purse. She walked in and as she was leaning over to grab her purse off a chair, Marilyn said, "should we continue this in private?" Sydney quickly said, "I'm just grabbing something. I'm not staying". So she left. Moments later, my parents came in and sat down (they knew how much we disliked our social worker). Marilyn repeated that same question. I was so annoyed. We were talking about imprints. Nothing crazy personal. Fred just said, we're all family. It doesn't matter. She talked to us more about the imprints and said she would get us one to look at.

She left to go grab the imprints and a few other things and we told my parents the other things she had talked to us about. We then looked at the clock. It was about 1:10. We decided that we needed to go in to see Freddie before the doctors pulled us aside. So off we went. As we were walking down the hall, Marilyn was walking back up with the imprints. We told her that we were going to go see Freddie and would look at the imprints later.

Monday, May 9, 2011

no catchy title here...

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.

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.