Our Journey (What Happened)

I keep looking at the moon and thinking, this is the moon that my baby was suppose to be born under. He was suppose to be an October baby, here any minute. and now its been two long months with out him and I can not imagine how I am going to live the rest of my life feeling this way. Its just layers of overwhelming heartbreak and immense pain.


He was my first pregnancy/child. I LOVED being pregnant with Truman. He is the best thing that ever happened to us. I was so excited to add a member to our family.


My friend Julie came to visit me the weekend of June 24th. That was the weekend that my pre-eclampsia started. I was 23 weeks pregnant. I had noticed a spike in weight gain but this is the weekend when my swelling really started to be bad.
I had early on set severe pre-eclampsia and only I was believing it.

I went to the doctors for the swelling and they took my blood pressure. It had gone up. Not enough for them to be concerned, yet, but they were going to keep an eye on it. 
Weeks passed and the swelling remained intense and uncomfortable. I went in for my glucose test and my blood pressure had increased again. This was the day I diagnosed my self with pre-eclampsia. I had always had great (low) blood pressure and I knew that my weight gain was not because of my eating and exercise habits. My doctors were not convinced. They had me talk to the nutritionist who I had been in close contact with my entire pregnancy. I told the nutritionist that i was following her diet very closely, eating super healthy and staying active and she still told me to lay off of the salt and increase my protein (which isn't good for pre-eclampsia either). I felt like they all thought I was lying to them.


Weeks passed and I stared to feel bouts of what I called "impending doom". It was like a very instinctual distress, something was just very very wrong. I called my doctors office on July 22nd after hours explaining that they had been watching my blood pressure rise and my swelling but that that night in particular something was very wrong. She told me to take a bath, relax and call in the morning if need be. If I wanted to, i could probably get that  midwife fired because I was emergency flown out of my county 48 hours later. "Relaxing" and changing your diet does not stop pre-eclampsia. She is lucky that I did not start having seizures and/or die that night.

The next day we went for a small hike and then out to dinner with Jeff's sister Naomi and her new husband. While we were ordering, my impending sense of doom was sooooo powerful that I thought I was going to lose consciousness. Jeff was very into the idea of going to a movie. I told Jeff that I was not going to a movie until I get my blood pressure taken. I had bought an at home blood pressure cuff that day and went out to the car to take a reading. It was my first time using it and the reading was so high that Jeff thought it was broken. So i went to CVS and used their machine and low an behold my blood pressure was 157/110, it was confirmed to be correct. Which if you don't know, is dangerously high. This is what I mean when I say, "I caught my pre-eclampsia". My Doctors should have been watching me more closely, they should have taken me more seriously and believed me about my weight gain. I can't help but think how things might be different today if I would have just continued to ignore my instincts and let them monitor me at their leisure.


It was after office hours, so I called the Doctor on call, told her my blood pressure readings and how I had been swelling and she said "Go to the Birth Center immediately."


I went and they hooked me up to monitor the baby and did some blood work. They finally diagnosed me with pre-eclampsia that evening. I was told that for the remainder of my pregnancy that I had to remain on bed rest. I was so sad that the water birth that I had planned for slipped away from me just like that. I was so sad that i couldn't go to my pregnancy swim classes anymore. I had no idea how much sadder it was going to get. I was now a high risk pregnancy with lots of concerns to think about. My goal was to make it to 37 weeks. They sent me home with container to fill full of urine so that they could get a 24 hour protein sample. This test lets them know if my kidneys are starting to stress or fail due to the disease.


The next day I dropped off my urine sample at the lab at the hospital. It was a Saturday. 
Around 5pm that evening I got 3 missed calls from the Birth Center. They finally reached me through Jeff's phone saying that I need to come back to the hospital immediately. My heart dropped, I knew that this was serious. They don't call you in on a Saturday night from your emergency contacts phone unless there is a big problem. I asked the nurse on the line if I had some time to shower and she seemed even concerned with that. I left immediately.


When we got to the Birth Center/ hospital, the head doctor was there in the hallway waiting. He said that my protein levels were dangerously high. I was hooked up to machines again, more blood work. They placed an IV catheter in my right hand. It was the first IV that i have ever had. They started me on IV fluids, a drug they call "Mag" and few other drugs. 
I had headaches throughout my pregnancy that I now know where part of my disease, but then I didn't know. I just thought I was having regular pregnancy migraines. I never took any drugs at all, not a single Tylenol. I wanted my baby to have the purest existence that he could. I ate all organic food. I went from that to being pumped full of drugs.


 Hours passed and finally the doctor came in to talk to me. He told me that my disease had progressed so quickly and severely that I would need to be flown to San Francisco right then and there. My Urine sample read that my protein levels were over 5,000 (normal levels are below 30). I was shocked and scared out of my mind. I had one hour to digest all of this information. Jeff had to run home to get me some belongings and I sat there and cried because i couldn't say goodbye to my dogs. I called my Dad, who lives in Florida, and told him to meet me in San Francisco. Jeff would have to stay behind, at home, to figure out what to do with the dogs before he could drive down to be with us. 


I can not fly, seriously. i need major drugs in my system or else I am projectile vomiting the entire time and crying. I begged my doctor to let me drive down to San Francisco, which is about 6 hours south from where i live. They said no, I have to be under medical care at this point, it was too dangerous. 


Jeff got back to the hospital just in time to spend 5 mins with me before for the ambulance that showed up to take me to the airport. This first ambulance that I have ever been in. and the first Mercy flight/ emergency flight that I ever had taken.


I was terrified, sad, concerned and mostly filled to the brim with anxiety. The mix of emotions was intense but I tried my best to stay cheerful and positive. In my mind, I was going to meet my baby and that was all that mattered to me. I would do whatever it took.

During, the flight I was strapped down to a hard surface where i couldn't bend my knees. It was uncomfortable and very cramped, as you can see the cock pit is right there. I had them give me extra drugs to keep me from throwing up. They constantly monitored the baby during our flight. 


I had the one EMT take a photo of me on the plane for "the baby book." I explained to her that someday, this would be a wild story to tell my son about.


 I had been crying but I smiled for the picture. The people that I have shown the picture to say, "wow, you look so happy." The truth is I was was out of my mind with mixed emotions of every kind and drugged. I may have looked happy but I was a wreck posing for picture that I thought I could laugh at later. I am not laughing at all now. Now that picture is a reminder of all the hopes that I had for me and my son even at the worst moments on our journey together.


Finally the flight was over. It was about 2am in the morning. I got to the hospital by 2:30am. 


As soon as I was in my room at UCSF, I was getting more blood drawn, a new IV catheter, ultra sounds, IV fluids, things attached to my belly for baby monitoring. So many people were rushing in and out of the room.


Finally I got to sleep by 4am and was woken up again at 7am for Doctor rounds. 


Doctor rounds were seriously like being on the tv show "Grey's Anatomy." I met so many doctors and so many nurses during my stay there that it would make your head spin. 


This is when I started to really pay attention. By the second day I was running my own machines in my room. I am thankful everyday for my medical training as a Veterinary nurse. I honestly believe that with out that training I would not have had a clue what was going on with my own body and I would have blindly gone for the ride. But I was Truman and my own best advocate, that i am confident about.


The monitoring machines had a volume adjustment and I listened to my son's heart beat for 8 days straight. He was the soundtrack to my stay at UCSF.


During these 8 days before he was born I did notice changes in him. He became less active. I was still being medicated with "Mag" a HORRIBLE drug that makes you feel like you were hit by a car. It makes you feel worse then any hangover that you've ever had, it burns while going into you and they keep you on it for days. It prevents you from having damaging seizures which is why they kept me on it. 


By day four my baby's heart rate started dropping, they called them "de-cells". They would rush in, in emergency mode, and there would be anxiety and tension in the air until they would find his heart beat and it would stabilize. I can not tell you how many times this happened. I was on oxygen myself for two days there. I had doctor and after doctor telling me the worst possible thing any expectant mother wants to hear and that is "emergency c-section." 


I already felt like i was at war, I was trying so hard to stay strong. I KNEW that if I needed an emergency c-section that I would be completely traumatized for the rest of my life. I was already traumatized enough. So I started to talk and put my foot down. I feel like often at hospitals, Doctors get so focused on cutting and emergency mode and ego and routine that they forget that they are dealing with an actual person. 


I will spare you all the in between details because my suffering was all worth it but its good to know a general idea of what i endured.
IV fluid drugs that burned, bed rest to the point that my skin felt like it was going to break open, ego emergency modes, real emergency modes, sky high blood pressure, risks of stroke & debilitating seizure, being kept awake for days, being told i can not eat or drink anything for days, my urine protein tests increased to Over 7,000, constant blood tests, monitoring, pain, complete change in diet when I was allowed to eat, drugs drugs drugs, even more swelling, and much much more. 


Calling Jeff and my Dad in the middle of the night on July 28th to come quick was the most eventful night. We were all stressed beyond functioning properly, exhausted in every sense of the word. That was the day that we thought Truman was going to come, but didn't.


The day before Truman came they sent me down for a ultrasound to see if my placenta was starting to detach or if the blood flow to Truman was decreasing. There was a cot next to me in the ultrasound room and my Dad laid down. We were talking and laughing together, trying to stay light during such an awful time. My Dad was so exhausted that he ended up falling asleep mid conversation. and started snoring!! lol Maybe you just have to know my family to think this is hysterical and adorable. Jeff took a picture, again for the "Baby Book" so we could add this part when telling Truman how silly his grandpa is. I'm sure the ultrasound tech thought we were weird, but I don't care, It was an "us" family moment.


You can really see in this picture how wide I have gotten from the Mag and fluids. I was holding so much water that it hurt.


On August 1st the Doctor rounds came late. When they finally came they discussed the decells with me and the results of the ultrasound. The Chef Attending doctor took a look at Truman's strip and asked me a few questions about his activity. the ultrasound pictures showed that my placenta was pulling away and he was getting decreased food and oxygen from me from when i had first arrived. He thought that at this point in was in our best interest to plan a C-section for later that day.


The c-section it self was very traumatic, for Jeff, not me. He said that my blood was everywhere. He was shaking and visibly a wreck, I spent most of my surgery comforting him. I had amazing anesthesiologist who helped me, but no one prepared or helped Jeff. He was such a strong Dad that day, I'll forever be proud of what he went through by my side. 


I lost so much blood during surgery that I needed a transfusion.


My Son was born on 8/1/11 at 3:53pm. he was 2lbs and 29w 4d.  
I heard one little cry escape him. then nothing. 


They worked on him to stabilize him. I was pretty drugged the first time that I saw him. They were wheeling him out of surgery they stopped, removed the Positive pressure breathing apparatus and said "Here's you son, Momma". I looked at him and all I remember is a blur of movement and then them quickly placing the breathing support back on him and out the door they went. The rest of surgery felt like it took forever. 
At the end they were counting gauze from surgery and they were missing one. All I remember thinking is, it would be my luck, if they can't find that gauze and have to open me back up. But they found it after like 15 mins. lol 


I was told that they had to make a "classical incision" on my uterus. Meaning I will never be able to labor in the future, if I do conceive I will need a planned C-section around 35 weeks. So I will always have Pre-mature babies. That is if I can get pregnant again, I have to wait 2 years until I can find out. and if I do get pregnant I have a 50% chance of this happening to me again.


i went to recovery, vomited and watched the nurses run around me filling out paper work. My incision looked awful and was oozing all sorts of fluids so they had Dr. Rowan come and look at it. It had been 4 hours and I still had not been able to touch and really see my son. Dr. Rowan looked at my incision and wasn't going to let me go down to the NICU to see Truman at all that night. I looked at her and got very serious, I needed to see my son. She finally agreed that a small visit was okay.


Randomly enough, Jeff too a picture of me in recovery, lol. My first photo as an official mother.

We got to his incubator station and he was laying there all pink and swollen with tubes everywhere.


The minute i saw him my heart felt like it was going to explode out of my chest. I love him so much. Words will never do it justice. 


We couldn't hold him. But i touched his face, head and feet. This is when we took our first and only family picture.

He was whimpering. Like he was suffering, like it was painful for him to breathe. 
He was trying so hard for us.
I was just so over the moon to see and touch him that I believed everyone when they told me that he was going to be just fine. I was starting to get nauseous from the anesthesia again so I decided I better leave before I threw up all over the NICU.

The next day I hit the ground running. Everyone was amazed at how tough I was. I had to get healthy fast for Truman and I was willing to do anything. He was all the mattered to me.
He seemed more stable. His color looked great. 
It seemed like everything was going to be okay. He needed to be on a ventilator to help him breathe but they assured us that this was normal.
We heard that NICU babies take steps forward and then back all the time and not to worry to much when set backs happen. They save 29 week old babies all the time and seemed very confident.

Those were the best three days of my life. by far. Jeff and I were both SO proud to be parents to him.
He held my finger, he opened his eyes and looked directly into my eyes, i saw him cry (no sound came out because of the tubing). 
That moment that he looked into my eyes, I will never forget. I was lucky enough to have my oldest friend Julie standing right next to me to see it too. I will forever hold on to that memory, I so deeply cherish that moment. I knew that he knew me, I knew that he could hear me and that he knew I was there with him.


He was all i ever wanted and needed in life. 
My mother is gone. Its just me, my Dad and Jeff. 
My son made us a family again. 
I was so excited for Christmas because we had a reason to celebrate again. 
I was excited for so. many. things. 
and purely grateful ever since i found out that i was pregnant with him. 


We had a few set back in the NICU. He started having an ever harder time breathing on the ventilator so they switched him to another ventilator and gave him three doses of surfactant which is a drug that is suppose to help with the development of the lungs.


No one ever gave us information to think that my son wasn't going to make it. Everyone was extremely positive about his condition. My Dad was the only voice of reason through out all of this. He kept very level headed about the reality of Truman's condition and made it known even though we weren't having it. In retrospect, I don't know why i didn't question the doctor's more about Truman, I mean he was 2 lbs and very small for 29 weeks. But I trusted that they knew what they were doing. and left it as that.


The night before he died i had mother's intuition. 
A doctor came down to my room and asked me to sign papers consenting to get Truman a blood transfusion. As the information was coming out of his mouth, it felt like the universe had wound up and slapped me across the face.


The doctor assured me that, again, this is a normal NICU baby thing and not to panic. I signed the papers and he was on his way back to Truman. As soon as he left the room, I turned to Jeff and said, "Something is going wrong, I don't want my baby to die." and burst into sobs. I just didn't understand how his body wasn't making enough red blood cells. It wasn't like he was bleeding from anywhere.


Often when Jeff gets overwhelmed, he falls asleep, narcoleptic style. We were both so sick with worry that he curled up on his chair and fell asleep. I couldn't fall asleep, I had to see my baby. I wanted to let the doctor's do their thing to help my son but I needed him to know that his Mommy was with him.


I could barely walk and was certainly not suppose to walk to the other side of the hospital.  


I stumbled out to a wheel chair and wheeled myself across the hospital floor to get to my son. 
I felt slightly panicked as i was wheeling, i remember thinking how it felt like i was in a movie, or a nightmare, something was so surreal about the entire thing as i wheeled down the hallway. Either way I felt like i was being watched from a different point of view.
I have felt that "movie" feeling before in my life when horrible things have happened to me. By now you'd think I'd recognize that feeling as a warning, but I guess I just never want it to be reality so I push through it even though I have a heavy sense about it that I can't fully describe.

He seemed sleepy and as sweet as ever when i got to him. He kicked my hand and rubbed his feet gently back and forth. 
I ask him how he was doing, talked to him for a bit and I told him that I love him.I left him at about 12:30am and went to bed. 

At 4:30 am 8/4/11 i shot up out of now where. bright eyed. 
I didn't question at the time why I woke up out of no where, I figured I was on a new Mommy time. 
My milk had come in remarkably well. I figured I would pump and then wheel down again to see Truman and drop my breast milk off at the freezer.


My intuition failed me this time, i had no idea that on the other side of my floor my son was starting to die.

As soon as i attached to the pump, there was a knock at the door. 
I yelled out "hold on" and then i heard a voice from behind the curtain, "No, you need to come now, your son is coding." 

We got to the NICU and everything was moving in slow motion. The room was dark. There was a crowd of doctors and nurses standing around him. 
They parted as we approached. There was a single spot light shining down on Truman.
My baby, my sweet boy, was blue. 
They were doing chest compressions and breathing for him. 
I started asking questions, I have no idea what I said other then did you give him drugs? (to try and revive him)I was crying hysterically, Jeff was crying. 
I knew that there was no turning back, he was dead. 
I told them to stop and let us hold our son. They removed all of his tubing and he passed away as we held him for the first time.


The pain at that moment, it cut threw me like lightening and its intensity is absolutely indescribable. It was beyond deafening. I will carry that pain with me until the day that I die. That I know. 
 It was a nightmare. it was a movie, it was someone else's sick script that we were living in and none of it made any sense at all. 


I am angry that I was given something so absolutely beautiful, the family that I always wanted and he suffered and we suffered and now we have to spend the rest of our lives without him. I lost so much that day. Not just my son, but my hope, my happiness, my personality, my entire life. Its fucked up.


I know that he lost consciousness while he was dying but it kills me that he went through that and I wasn't with him. It is my job to protect my baby and make him feel safe. My instincts were firing and I listened but not close enough.

We sat with him in the NICU for about a half an hour and then I decided to take him back to my room with me. I laid with him for 2-3 hours just looking at him. Talking to him. I finally got to see his precious face without all the tubing covering it. 
I wish SO much that i spent more time with him now. Because it feels like only 5 mins now.


My son never got to eat food, he never got to drink a drink, all he knew was needles and tubes. He never got to be held the way every baby desires to be held. I never got to change his diaper. I never even saw his little butt. There is a part of my son, the boy that Jeff and I made from scratch, that we never saw and we'll never see again.
it was the worst day of my life. 

The tears, the pain, the questions, the confusion, the shock, the anger. 
Time has escaped me and is the most abstract thing.
Its hard to believe that this all happened to me. its very confusing.

I don't know where to go from here. 
I don't know what to do. 
All i want is my son back. I just want to protect him and take care of him. 
I am a completely different person now that this has happened to us. Everything has changed.


Later that day all the babies on our floor were crying. I'm sure the other mother's heard everyone in my room echo back in waves of sobs. We would have done anything to hear Truman cry, because it would mean that he'd be alive.


Truman's doctor came to talk with me. They expressed how "shocked" that they were by his passing. To them is was sudden and out of left field. "It took everyone by surprise", were their words.I'm not sure how much I believe it all in retrospect. I feel like maybe they were just a little cocky and doing the best that they could but not overly concerned because they weren't playing that close of attention. I do believe that even if they were paying closer attention that Truman would have died, eventually.


He was just too small, too premature and had been starved by our placenta for too long. His body couldn't take it.


The autopsy report came back as cause of death: bleeding in the lungs.
But he also had bleeding in his brain and heart. I think its hard to speculate which came first.
I'll never know. But it doesn't matter. Its the Pre-eclampsia that really killed him.


It was very hard to leave the hospital with out him. When I stepped outside and there was this hustling city all around me, I couldn't understand how I had gotten there. I had teleported there pregnant and now I was leaving without my baby. I sobbed the whole 6 hours home. I wanted Truman in the car with us. I wanted to be a happy family.


With in two weeks, I lost 65 lbs of weight, all of it was water from the Mag and pre-eclampsia. That means that in the 7 months that i was pregnant I only gained 10 pounds of actual pregnancy weight. And to think no one believed me, they all thought I was sneaking one too may candy bars.


That is just part of our long story. There is way more.
I think about it all over and over again in my mind.


Its been 2 months today that this happened to us.
I miss my son more then anyone will ever understand.


I love you Truman. I hope, so much, that you know that.