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.

The Beginning

Over the last couple of months, before Freddie came to Earth I'd been having weird thoughts and feelings regarding having a baby. For some reason, whenever I talked about it with my friends or with family, I could never fully picture me with this baby and I kept receiving promptings that this pregnancy wasn't going to go as I'd planned and I needed to be prepared for that. Of course, I brushed off any and all of those thoughts telling myself I was crazy and was making up thoughts like that. I'd never even told Fred this until we were in the midst of the only week we would have with our perfect baby boy in this life. Looking back I know I was being prepared by the Spirit and that I've known something was going to happen - I just didn't know what.

My pregnancy was perfect. There I said it. I was never sick. never tired. I felt great and I even felt cute. I had little to complain about and therefore little to worry about. Monday, April 4th was like any other day. I worked and chatted with friends about finalizing baby shower lists and dates, girls trips, and an upcoming Utah trip. That night, I began having some weird stomach cramping and Freddie wasn't moving as much as he usually did. I was of course nervous but tried not to think about it because I just knew I was being paranoid. The cramping began to get painful and continued all night but I still tried to brush it off thinking that this was all normal pregnancy stuff and it was finally my turn to have something to complain about. Around 3:30 AM the cramping was accompanied by bleeding and that's when I decided we needed to go to the hospital just in case.

On the way to the hospital, I talked/cried to the OB on call at my office (someone I'd never met or heard of). She wasn't worried about the symptoms but agreed that I needed to go. Fred thought we should go to the Mercy Gilbert Hospital which is about 10 minutes from where we live. I said no, the Chandler Hospital was within 3 minutes and since they were going to give me some medicine and send me home it didn't matter where we went.

When we checked in at labor and delivery, they did a couple quick tests, hooked me up to a fetal heart rate monitor, and then ordered an ultrasound. I continued to have cramping which was getting more and more painful. The triage nurse commented that it looked like I could be having some minor contractions but nothing consistent. She checked on the bleeding and then left us alone.

During the ultrasound, the technician wasn't worried. She told us that Freddie's heart rate was fine and the placenta was fine as well. I continued to have cramping so she asked if I had received anything for the pain yet and said that hopefully they would be getting me something soon. As she left, I began to cramp again and the nurse came in to lower my bed to help  relieve some of the pain. Moments later, three nurses surrounded my bed and were telling me that they were taking me into a room.

As they wheeled me into a room, I kept thinking "why are they taking me into a room? I just need some medicine and an order to be on bed rest and then send me home!!!"

When we got into my room, they had me move beds. When I sat up the room was a beehive of activity - there were nurses moving very quickly organizing equipment, an incubator, and a million other things. We had no idea what was happening. Poor Fred just had to stand in a corner to stay out of the way yet no one would say what was happening. One minute they weren't talking to us just buzzing around us and the next I had an IV and a nurse was in my face asking me what we wanted to do if our baby came out and wasn't breathing.

What do you mean if our baby came out? I'm only 23 weeks pregnant and I just need to be sent home.

Of course Fred and I said we wanted to save our baby but how was it possible that I was in labor?

The nurses tried to help me breath through the cramping which I was told were actually contractions - something that hadn't crossed my mind because I 1. had never been in labor and 2. was only 23 weeks pregnant so this wasn't a possibility.

At this point, I begin to panic and yet I'm still contracting and it's getting more and more painful. I uncalmly ask for something for the pain - something to stop the contracting - anything and am told that there is nothing they can give me because I am dilated to a 10 and anything they gave me would mostly effect the baby at that point which would do more harm than good.

WAIT. DILATED TO A 10??

They told me that I was having this baby and all they were waiting for was the neonatologist and my doctor and then we would begin.

It was probably about 6am at this point. I tell Fred that I want a blessing before this happens - he immediately gets on the phone and tells me that two of our friends are on their way.

The Neonatologist and OB get there and immediately begin prepping. The nurse pops back into my face to tell me all about the risks and outcomes with having a 23 week old baby and does an excellent job of scaring us.

My contractions are strengthening and when my doctor is all suited up she tells me that she's going to break my water. As she's reaching for the hook, my water breaks. She tells me that during my next contraction I need to push. At this point my contractions are about every 45 seconds, after she says this everything stopped.

I didn't have a contraction for another 3 minutes. It was the longest, scariest, most restful period. Then another one came and out came Freddie. This is a bit gross- but he literally shot out. The doctor barely caught him and actually kind of fumbled him in the process.

He was born at 6:22 AM.

They wisked him away and once they got him breathing and somewhat stabilized, Fred was able to go over and look at his tiny newborn son.  On their way out they stopped and showed me this tiny little person. I couldn't see much of him and they literally only paused on their way to the NICU.

They finished taking care of me and cleared out. I felt fine. Like nothing had ever happened.

Our friends called Fred because they had just gotten there to give me a blessing - he went out to speak to them and I just sat staring at the now empty room - wondering how this could have happened and when I was going to wake up. Finally a nurse comes to ask if they've fed me. nope. So they get my order and leave to find me a breakfast tray. Fred comes back in and then a new nurse comes in to say she's replacing whoever my previous nurse was and would be taking care of me. She was great (and will get her own post). She knew of our worries and told us that they were working on stabilizing little Freddie and that as soon as they did he would be moved to St. Joseph's hospital in Phoenix that had more experience with babies his size. She told us that before they life flighted him she would make sure we got to see him.

Our first family picture

We were so blessed that our friends lived just as close to the hospital because they were able to come back and give both me and little Freddie a blessing. As soon as they finished my blessing, my nurse came in and told us we could see our baby. We all went down to the NICU and there he was. This tiny, 1 pound 6 ounce, 11 inch baby boy. He was perfect.

While in the NICU, our friends Curtis & Craig were able to bless Freddie. It was one of the most tender experiences I've ever witnessed. Freddie was in an incubator and Curtis was only able to get one finger on his tiny head. Despite the rush of motion in the NICU, there was a peace that was evident as Curtis blessed Freddie.

While the Helicopter crew came to prepare Freddie for flight, one of the NICU nurses came up to me and put her arm around me and offered a prayer. The staff there was very sweet and supportive. They told us countless stories of babies his size beating the odds and making it.

Don't be alarmed. The plastic was to keep his tiny body warm and add humidity

Ready for his flight

Freddie was then life flighted to St. Joseph's and we were sent back up to a new room. We spent a few hours there (wondering why we were at a hospital. I felt great) and then they discharged me. In total, we were in the hospital for less than ten hours. What I would later call a drive by birthing. They didn't have a chart for me - we weren't served any food - and all of the expectations I had about birth were blown.

This is everything we brought to the hospital.
My purse & a book.

Where was my crushed ice and free hospital mug? (this may actually be the things I was most concerned with - in regards to my hospital stay that is)

Freddie

Fred Joseph Wald VI was born 17 weeks early on April 5th.
He was on a special mission from heaven and needed only to receive his mortal body. While in our arms on April 12th, he returned home to his Heavenly Father. He is one of God's most precious angels and we are so lucky he chose us as his Earthly parents.

We know he is with us and that we will see him again.

This is by far the hardest thing we have ever gone through. One of my nurses told me that it was therapeutic to tell the story and that the more I talked about little Freddie and our brief time together on Earth - the more I would heal. I've decided to document Freddie's journey in hopes that it will  not only help me heal in a small way but give us a place to remember our incredible experiences, heartaches, and tender mercies from the Lord.