Most of the time when I'm bored at work, I find myself surfing the internet. I'm usually reading about one of two topics. EMS or baby loss. While sometimes it is totally depressing to make myself think about things, other times it is also therapeutic. I don't think I know anybody in my personal life that truly understands where I'm at right now. The fact that I really have nobody that "gets it" leads to a lot of small meltdowns. But on the internet... I fit in. I'm sadly welcomed in. There are stories similar to mine and some far more heartbreaking. But they know my words. They speak them even before I do. It's a horrible bond, but a comforting one. I know some of them read here, and I read there, and I'm so very thankful for them.

One site, faces of loss, shows such normal women and shares their stories. Some are so incredibly close to mine. Another shares stories just through words. I found words tonight from an unnamed mother that are so incredibly dead-on for me that I need to post it here so I don't lose it. I don't see it as profound or sentimental as some seem to be, this one is just real. These are the words I can't find to explain to people. These are almost the exact words I said to my Gavin the night before he died, when I had to tell him that everything would be okay and I accepted why he needed to leave me. 

I told her how sorry I was and that I loved her and did not want her to suffer. I would rather suffer every day for the rest of my life than to allow her to suffer one moment in her life.
~Mom of an Angel

I'll take pain and suffering a million times over when it means that he doesn't have to. 

~K

Sadly?!

Somebody posted on facebook this morning, "Sadly had to watch my son turn 1 this week".
I realize life is not all about me, and people generally don't care about what I think but seriously?! Could you not find a different way to phrase that? If you're reading here, let me teach you something I learned from being a mother for just 12 days. Your child's birthday is not sad. Sad is watching your son die. Sad is knowing your son will never turn 1. Or any other number for that matter.
I realize the poster just worded it poorly and I hope was not actually sad about it, but I generally think before I post on facebook, and wonder if my post is going to hurt anyone or offend someone when I didn't mean for that to happen. If you're going to post stupid shit like that, just remove me from your friends list. I work pretty hard at being normal and when I fail it's usually my own fault, so I don't really need anybody else causing the bad moments for me.

Truth.

"If you know someone who has lost a child, and you're afraid to mention them because you think you might make them sad by reminding them that they died -- you're not reminding them. They didn't forget they died. What you're reminding them of is that you remembered that they lived, and that is a great gift."
--Elizabeth Edwards

Gavin's Life! Part 3: Hard Days

The first two parts were so easy for me to write... it was very raw and open. It's never been hard for me to talk about Gavin, but writing about his death just hurts. Hurts like freaking hell. Some days have just been hard lately. I think I was very numb for awhile and reality finally decided to settle in, and it's a reality that just down right sucks. There are still some details that I (we) just aren't going to share, but I'll do my best.
I don't want to admit this, but the day they told us about his diagnosis, I had a pretty hardcore breakdown. I left as soon as our meeting ended, and I'm completely ashamed of that. I could have stayed all day, but I chose not to. I gave up precious moments because I was weak. I couldn't handle looking at Gavin without breaking down and crying, and I didn't want that to be how our moments with him went. I can't even type that without crying! Ugh. So we went home, as I badly needed to compose myself and digest some of what we had been bulldozed with. My eyes were so puffy it hurt to open them!
The next morning, I went back. I had a lot of people asking if they could come meet Gavin, but I really wanted some alone time to just be with my baby so I spent the day ignoring people. My parents and sister did end up coming, which was good because I ended up getting to hold Gavin for the first time so I had some photographers! It was quite a setup to get to hold him, having to set all his lines and vent just right so nothing was pulling... I almost felt bad that the nurses had to do it! But I desperately needed that connection, and I think they knew that. That was the first moment of happy I'd felt in a few days at least!
The next day (Monday) we had another care conference. All of Gavin's doctors and nurses and neurologists and social workers were there, which was incredibly overwhelming, and they wanted decisions (like we had any!). He was breathing on his own, always was, and he was ready to be extubated. There were many what-if scenarios, and many questions we did not have answers for. Did we want to be discharged and set up hospice in our home? I said if he reached the preemie milestones and was big enough to take home then hell yes we would- but if not, the care he needed was at the hospital. We could be there 24 hours a day- his doctors couldn't do that at our home. And seriously, he was less than 3 pounds! I'm convinced they asked this question in a moment of insanity. Did we want all cares and feedings stopped to allow natural death? I think this answer may have startled them, no way in hell will my son not be fed when he's hungry! Looking back, that was the one time I raised my voice. In that moment, and many to come, I fully understood the "mama bear" instinct. The entire situation was out of my control, but I felt a fierce need to protect him as much as I could. Then I cried. Big ugly tears. I didn't know what the right answers were, but we did the best we could.
*Side note: Anybody who saw the Grey's Anatomy episode about Morgan's premature baby that ended up dying that aired within a week or two of this, I could seriously hurt somebody for not warning me. That shit should come with a disclaimer.
Anyways. We decided to have a Meet Gavin day before he was extubated... just in case it didn't go well. We wanted to get it out of the way so we could spend our time just focusing on Gavin and not worrying about coordinating times for people to come and having to put on happy faces.. that sounds awful, but I just wanted to be alone. So Tuesday was the big day, and meet Gavin they did! It was a constant parade of visitors, and I'm sure he was just as worn out as we were by the end of the day, if not more. It was so so great to have so many people that care about us and our son, but it was an incredibly hard day because I knew as they were meeting him they were also having to say goodbye to him in case they didn't see him again. I know it was a hard thing for every single person, and I will always admire and love them for that. We were all able to keep it pretty light, "Yes, he sure is cute!" "Yep, that's definitely my nose!" "Definitely got daddy's feet!" but you could hear the pain in everybodys voices. I think the hardest was Nate's grandma. She was so incredibly heartbroken, but unlike the rest of us she was not trying to hide it. If you've never seen a grandma cry, let me tell you, it hurts. She asked if she could touch him so I opened up the isolette for her and she grabbed on for dear life. She held his arm and just cried. She kept saying "he's so perfect, just so perfect." I agree, Grandma. Our baby couldn't have been more perfect.

Break

Part 3 is coming soon, I promise. Life has been handing me a few more hurdles and I'm having a tough time. I'll be back!

Gavin's Life! Part 2. His first week.

Gavin was born at 2 lbs 8 oz, 16 inches long on March 26th, 2012. A few days earlier I had received two doses of betamethasone to mature his lungs, so when he was born he was able to breathe on his own but was working kind of hard at it so he got an ET tube placed to support his breathing. He had a hard time regulating his blood pressure, so he was on a dopamine drip and also insulin to control his blood sugar. Nate was able to be with him right away, but I had to wait until the next morning when I could get out of my hospital bed. I finally got there, and he was soooo teeny, but so perfect.
For the first 4 days of Gavin's life, it was a mix of medications and tests to figure out how to stabilize him better. He had lots of visitors and got to meet a lot of family! He liked to stretch out and show off his enormous feet and hands for everybody, and he definitely stole their hearts along with ours. On Day 4, they were going to do an MRI on Gavin, because we knew he had some fluid on his brain, and Dr. A told me they had done an ultrasound of his head and were a little concerned because his brain looked a little smooth. I of course went home and consulted Dr. Google. What I found was definitely not good. That was the point I began to get very worried, but I also knew that any time you look for a diagnosis on the internet you either come up with cancer or death, so I tried to move that to the back of my mind. I got a phone call that night that the neurology team wanted to meet with us on Saturday (Day 6).

Day 5. I arrived at the hospital and checked up on Gavin, I believe he was off of most of his medications at that point but was getting a blood transfusion for something. He looked good and wiggly and got really mad when I touched him with my chilly hands. I noticed at that moment that his sleeping position looked seriously uncomfortable, but after staring at him for awhile I realized that he was sleeping in the exact position that I do. On his side with his head cranked back, arms up and leg stuck out. And he was perfectly content. I held his hand and just smiled. After a few minutes, Dr. A came in and told me things were going well and he was pretty stable, and he wanted to tell me how the MRI went. He said we could wait to discuss it until the next day when Nate was coming for our meeting, but I have no patience and told him to get on with it. He proceeded to tell me that our Gavin would not live. He had lissencephaly, he said, and it wasn't my fault. I nodded my head and stared at my tiny and helpless son, numb. I had waited so long for him, and I wasn't going to be able to keep him. I started sobbing, and Dr. A kept apologizing. Gavin woke up from his comfortable sleep and started kicking and squirming and he did not calm down until I stopped crying. I made a decision at that moment, that my baby would not feel my pain. I didn't know how long we had with him, and he was going to feel nothing but love and our happiness that he had made us parents. I told Dr. A I would come back when I could compose myself better. If my son's life was going to be short, I was not going to let him feel one ounce of our sadness, because we were so incredibly happy to have him, no matter how the tides had turned.
Dr. A called me later that evening and said Gavin's genetics testing had come back, and he had Miller-Dieker syndrome, the same thing I had found on the internet the night before and was hoping so much that my Gavin did not have it. The life expectancy was extremely short, and the quality of life was not good. It was a life expectancy of pain and suffering, and I was horrified. I help people for a living, and in this instance there was absolutely nothing I could do to help my son. Helpless. Useless. I decided to stick with the only plan of action I could come up with, just love him hard for as long as he would let me. He would not see sad tears, he did not get to feel my pain.
We did meet with the neurology team the next morning. They repeated everything Dr. A had already filled me in on. They showed us the MRI of Gavin's brain, and used a lot of different ways to explain the progression of his syndrome. Among other things, there would be seizures... profound mental retardation... loss of muscle tone... breathing difficulty... feeding difficulty... and ultimately, death. I sobbed, again.
I don't know why, but I feel the need to clarify something. Throughout our prenatal testing, we found out about certain issues the baby had. We knew that he more than likely wouldn't be the definition of "normal". We knew he would have some sort of delays, and we did.not.care. That little boy could not have been more perfect in our eyes, and always was and would have been. My little Gavin, he was made for me.

Gavin's Life! Part 1. Pregnancy.

I've been asked by several people about my Gavin's story. I love to share it, and it usually ends up being an hours long conversation where I bring the other person to tears. I don't try to do that, I promise, but I'm pretty open and honest about it. There's your warning.
I suppose the beginning would be a great place to start, but I'm not sure where that beginning really is. I've had several pregnancy losses over the last few years. Devastating, those little buggers. So be assured, Gavin was very very very very wanted. I spent the first few months of my pregnancy with him afraid that I would lose him too. Once we got to the 20 week mark, I finally relaxed a little and started to believe that I might actually have a baby! Around that time, we had some abnormal test results that sent us to the cities for more testing, and I wrote about those visits already so I won't bore anybody with those details. As I write this, I realize there may be others with similar problems and I want to be able to help if I am able, so if there are ever any pregnant people reading this, my abnormal test results were from a quad screen, and I tested high for a neural tube defect, which turned out to not even be an issue. I find that I can't delete my words after I speak them, and I like to blog how I talk. It often ends up in random unorganized messes, but such is my life!
Anyways. Pregnancy was pretty difficult on me, physically. I literally threw up for 6 months. I had polyhydramnios, too much amniotic fluid, and that makes every aspect of life just plain uncomfortable. At the end of my pregnancy with a 2.5 lb baby in there at 32 weeks, I was measuring at 40. I couldn't sit, I couldn't lie down, if I stood for more than half hour my legs swelled to the size of tree trunks, I just hurt all the time. Then one random Monday (32 weeks and 5 days, I believe) I went for a check-up with my normal doctor and my blood pressure was 180/112 and I was apparently having regular contractions, although I wasn't feeling them. She sent me to the hospital in the cities via the ambulance service I work for, lights and sirens, with my co-workers in charge of my care. I was pretty embarrassed about the whole thing and really just wanted to go by private vehicle, but apparently I was at a pretty significant risk for a seizure or a stroke, so my doctor was having none of that idea. I got to Riverside around 4:30, Nate got there probably around 6:30. They did several UA tests, because the triad of pre-eclampsia is hypertension, edema, and protein in the urine. My first UA came back negative, and they explained to me that sometimes when your protein gets so high it kind of cancels itself out. The second UA tested it in a different way and as they expected, it was off the charts. That's about when Nate arrived, and they informed us that our baby would be arriving that night. They gave me the choice of how I wanted to attempt to deliver, but said if we tried the normal method there was about a 50% chance that he would be in distress and we would have to go with an emergency c-section. There is nothing that scares me more than the words "emergency" and "surgery" in the same phrase. I just picture mass chaos and scalpels flying everywhere.. so I chose the planned, much more relaxed surgery. (I know this is warped thinking and that's not what actually happens.) Around 8:30 pm, we were wheeled down for surgery, my first ever.
I was given a spinal block, and then the curtain went up. A spinal block is very misleading, as it turns out it only blocks pain, and everything else is very very much felt. I could feel the cutting, I could feel the pulling and yanking and I felt when they broke my water. (I also heard it when it hit the floor! No joke!) I felt when they pulled my baby out and told us he was a boy, which we already knew. 9:08 pm. Nate went over to see him as the NICU team did their thing and I got to hear Gavin squawk a few times from across the room before he got his tube put in. I remember being so happy about that tiny little cry, because it made me believe that he was going to be okay. I knew that he was getting the best care he possibly could, and everything would be fine. That was the point I finally let myself relax, and I rolled over as well as I could and threw up. They brought Gavin over for me to see and he was all bundled up so all I could see was his face. I thought he was so so tiny, but he looked good. I cried, and he was whisked away to the NICU.
That's pretty much the end of my part of the story, because that's where Gavin's begins.

I wrote earlier about the pregnant part of this whole equation, and I do have to add that as much as it sucked, I wouldn't change it for the world. I will never ever whine or complain about being pregnant, because without the 7 months of crap, I wouldn't have gotten my Gavin. I'd go through worlds of pain for that boy, if only that would help.