Tuesday, December 11, 2012

STAR Ceremony

Last week I spoke at the S.T.A.R.(Special Treasures Are Remembered) candlelight ceremony. STAR is the program at my hospital for infant/pregnancy loss.

I figured my journey should be heard and possibly help other moms out there. I'm posting my speech for those all over the world to read that need to see they are NOT ALONE.

Cullen’s Story

Good evening
I’m Allison and I’m a mom to 4 beautiful children: Stella, almost 8 Georgia just turned 4 and my twin boys Grady who is 17 months old and Cullen. Cullen was born alive and grew his wings at 5 hrs old. This is his story & my journey.

November 2010, I found out surprisingly that we were expecting It was NOT something we EVER thought about. I never really saw us as more than a family of 4.

In, December I went in to my doctor to confirm my pregnancy with a blood test, but the numbers were showing that I must be further along. The OBs office sent me to Peninsula Imaging for my US since they figured I was about 11 weeks

I sat in the waiting room that morning, nervous and feeling like something was VERY wrong.
The really nice US tech brought me back and started....at First glance, I knew that THAT wasn’t an 11 week old “Size of a Fig” baby. NOPE, she said I was only 7 weeks along....the size of a blueberry. THEN she did a split screen. TWINS. I laughed. I cried, I laughed some more and then cried even louder. I’m sure I could have been heard outside the room.

HOW in the world are we ever going to afford 2 babies at the same time? I cried on the way home. I walked in the door and as my husband opened it I just started to ball even louder. Looking back, of course it wasn’t that I didn’t want the babies...I was scared about raising 2 more children PLUS dealing with my Georgia who was just shy of 2 yrs old and who was SO difficult in the first place. Afterall she was still getting up several times a night crying because of horrible reflux.

I was so hard on myself for most of my pregnancy. I played LOTS of mind games with myself. I felt like I didn’t want the babies, but looking back, I KNOW I was just scared. I don’t handle pregnancy well....it actually hates me. I lose weight, can hardly eat/drink am nauseous 24 hrs a day, how in the world will my body grow 2 healthy children while sucking everything out of me.

I read books on being pregnant with multiples...I googled everything I knew then learned a WHOLE new bunch of things. Growing multiples was NOT easy. The demand on your body is amazing. It certainly wasn’t like my doctors described....”just eat a little more than normal”. Diet is so very important as well as supplements.

I contacted a professor who actually was also a nurse/author of a book called “what to expect when you’re expecting twins, triplets or quads”
I asked her for a diet to follow. She was very concerned with the fact that I had hyperemesis and was so sick, she said if anything, that that was my number one priority.
SO, I called the OBs office and asked to be seen ASAP. I was very lucky because the Dr I saw knew exactly what was going on and gave me a medication that honestly changed my life. SO, there on out for just about my whole pregnancy I was taking 3 different anti nausea medication 6-8 times a day so I was able to eat & stay hydrated and try to keep my babies growing in a healthy way.

February 2011 at 18 weeks pregnant, we drove to Annapolis to the Center for Maternal Fetal Medicine...I was so nervous!!!
WELL, we found out we were having 2 boys!!! They were SO healthy! Baby A, on my right side, had a BEAUTIFUL, perfect heart and had all sorts of fun kicking his brothers head and my bladder, Baby B, liked to kick me in the ribs! We were SO excited. BOYS! I didn’t know what to do with a boy, let alone 2!! All I knew was glitter, bows, toy high heels and dress up crowns! I was SO unbelievably happy. That drive home....was the best.

I began seeing the OBs every 2 weeks, regular USs at peninsula imaging every 4 for growth.

I had a great group of friends online all due with twins in July 2011....It was so nice to compare stories and see how everyone was hanging in there. It was also scary because of few of my friends were being monitored for TTTS.

TTTS is normally monitored and looked for when a multiple pregnancy has 2 babies or more sharing the same placenta. Friends of mine were being flown across the country to specialized doctors for laser surgery to separate blood vessels being shared by the babies, so one baby didn’t get more of the blood circulation than the other. Friends of mine were put on bedrest at 18-20 weeks. a few whose babies did have ttts delivered at 24, 25, 28, & 30 weeks. Needless to say I was fully aware of TTTS.

I insisted I nickname the boys, because I needed to call them something rather than A & B....I came up with the dynamic duo, Batman and Robin. Baby A (was originally b) was my Robin, because Robin in all those old tv shows was just super excited about crime fighting and had constant ideas.and seemed jumpy, like my baby always on the move and flipping around! Baby B, head down, seemed too cool and calm...just like batman...totally in control.

Every US i had I learned where to look at the computer so I was able to track the boys progress and sizes.
As the weeks went by and I got bigger and bigger and so uncomfortable that I would cry getting in and out of bed, and well forget about rolling over. The pain was excruciating. My stomach had stretched so far even one of my Drs said he didn’t think I could get any bigger.

I began to be concerned with Robin “my Cullen” although I didn’t tell anyone I had already named him. He would fuss, wiggle around like something was wrong; then there would be nothing.
I was so worried about him.
I made lots of trips to L& D to check on him...I was there so often many of the nurses became comfortable with me to the point where they would tease me and make me laugh to help calm my nerves.
My last US I had at 33 weeks, proved to me what was going on....Cullen was now much bigger than Batman.

June 23rd I contracted all day. I attempted to sleep but woke up around 4 to go to the bathroom, because when you are THAT huge, all you can do is pee. Well, i was a little worried because I already had a UTI and I thought my bladder was really irritated. I woke Jimmy up and told him I was going to L&D like it was nothing. (I was 35 weeks)

Talk about a big surprise when the doctor came in and told me I was in actual labor and they were going to do my c section. I was in total shock.
I was prepared for them to say “Go Home you’re fine.”
I called Jimmy and surprised him and said we were having our boys today!!!
I got a hold of my mom in CA and told her to get on a plane!

Looking back, I wish I had savored the moment more. I wish I took a picture of me HUGE and pregnant....because that would have been the last time I would be with both my boys alive.

In the OR I was overwhelmed with the amount of people for a twin csection.

I was VERY lucky the spinal worked the 3rd time because the first 2 shot down my right leg. They were thinking they would have to put me under. I’m so glad I wasn’t.

The started the surgery and out came baby B, Batman, My Grady all 6.2 lbs of him. He was very pale....very pale. A minute later Robin, My sweet sweet Cullen was born with the tiniest of cries, he was 7.14 and reddish purple and swollen. I knew immediately they were victims of TTTS.

So much of the next 5 hrs are still a blur. I have lots of memories,.

memories I don’t ever want to forget because those are the only ones I have of Cullen.

I will never forget the faces of those that worked on him.
I will never forget the nurses crying, the nurses wiping my tears, holding my hands, praying over me. I will never forget Dr Urban getting in my face telling me I did nothing to cause this...becuase at this point all I was doing was screaming and blaming myself because I “didn’t want them” That I did want them now.
I will never forget the sound of him trying to breathe as I finally held him as he lay limp in my arms,I repeatedly told him How sorry I was and that I really loved him and wanted him.
I will never forget the fact that I told them to take him away from me.

I don’t remember much of the rest of the day. Cullen died at 12:30 in the afternoon.
I remember not feeling well. Being hot, then cold.
Being alone and then being in a room full of people. To say I felt numb, is a total understatement.
It was denial.
I tried to reason or just convince myself that this was the way it was supposed to be.
I kept telling myself that THIS was the way it was meant to be, I was only supposed to have one of them.
I decided that the distress Cullen was in put me into active labor. That he truly was his brothers superhero. When my heart was so heavy I placed blame...it’s what mothers do best, I blamed myself. The pain was physical mental and emotional.

There was simply no way I could FEEL this pain for the rest of my life.

I guess I wouldn’t let myself “FEEL” because I had Grady in the NICU fighting for his little life. Grady needed an immediate blood transfusion or he could die too. Cullen was born with more than 2/3s of Grady’s blood inside him plus his own. I don’t believe he had many reflexes. At an hour old his beautiful eyes were fixed and dilated.
They tried for 4 more hours after he coded to save his life. They gave my baby every possible chance.

The past 17 months has been a roller coaster of emotions.
Dealing with the death of your child....is nothing short of extreme pain. I’ve read that there are anywhere from 5-7 types or stages of grieving. I feel I’ve gotten stuck in a few of those stages then revert...it’s a vicious cycle. I think one of the most difficult or maybe annoying thing would be when someone compares the death of someone they know or other relative to my baby dying and my grieving. It’s just not the same, We shouldn’t “compare”
And most importantly, I think those who have never experienced the death of their own child, should never ever judge an angel parent until they’ve walked their journey.

I experienced denial for so long. I think after denial I was angry....but while all this was happening in my heart and head I was raising 3 children. I was taking children to and from school. Life didn’t pause for me. Life just kept going.....I went through the motions. day in. day out. I became like a robot and I had to, if I didn’t want to feel the pain.

Grieving a child’s death...is so hard. For the most part, you don’t have many memories, or like me, the ones you do are not pleasant or happy ones. i’ve learned so much on my journey. I’ve learned that once you hit rock bottom, you really do find out who your true friends are.
I have found that as a loss mom I simply cannot to be quiet.
I have 4 children.
I had a child die. I’m allowed to grieve for however long I want or need.
Cullen has taught me to stand up for myself.
To ask for help.
I recently had to stay in the hospital because I had hit bottom.
I knew my life was turning for the worst.
I was afraid for my children.
I voluntarily checked myself in....to the mental health unit.

I was admitted...and STILL in denial. They kept asking my plan for suicide. I told them I didn’t want to kill myself. I wanted to hurt myself so I’d end up in the hospital....I didn’t want to THINK about a million things each day. I wanted to cry about Cullen and not wipe my tears because I needed to cook, change a diaper or check homework. I needed time. Time JUST. FOR ME. I didn’t want to admit wanting to drive off the bypass was actually a plan for my suicide.
I’m not sure I still am ok saying that.

In the hospital, I didn’t get to be alone, or just cry....but I was able to begin the healing process. I was able to FINALLY let go of any notion that I caused Cullen to die. That I was going to love him no matter what and that even though I constantly told myself in my head that it would be so much easier if we were having just one baby, That no matter what I was GOING TO LOVE BOTH of my twin boys.
I think being in the hospital with 10 strangers who I openly told my story to helped. I was ready to start to heal. I was ready to let go of some of that pain, some of the blame I put on myself. As mothers I learned that we carry an immense amount of blame. I met other moms in the hospital that week, they too had a great deal of stress, pain and placed blame upon themselves. We are all here just doing the best we can with what we have.
I learned that for most women, especially myself, I can simply cannot do it all. I need to learn to ask for help and that asking for help is really a gift you can give yourself.

I came out of the hospital, scared & almost afraid of the real world. It was overwhelming being thrown back into LIFE. Because like before, life doesn’t pause, it doesn’t slow down even. My children expected me back. I have learned to be honest with everyone and that includes my children. I’ve learned that if I tell my children I’m okay I’m not doing anyone any good. SO now, they know if I’m sad or just tired or just need a break. Because I’m human, I’m not a superhero.

My girls talk about Cullen all the time. Stella draws pictures of him as an angel looking over us. And Georgia, well she still talks about when he is better and he comes home she will hug him. I’m teaching Grady that Cullen is his brother that he can say HI to his pictures, that we love him and miss him.

I have stronger days and not so strong days.
Grieving and Healing is a journey that as much as you want it to have an end....the END is just too strong of a word when it involves your baby. I guess it comes back to the stages of grief. Acceptance of what has happened. There are times I accept this. I accept that this is what is. At times I’m angry, depressed I still will go backwards and stay in the denial stage. Denial is so much better than reality. I remind myself everyone is on a journey. You simply do not know what a person has been through that day, that week or even in their lifetime to affect them. I’ve become more conscience of this on a daily basis. Cullen has made me this way. Cullen has shown me that compassion towards others takes center stage. I hope to instill this in all of my children. I just want to be a better person.

SO here I am, my journey continues. I don’t know where it will take me. But I do know I will never forget my beautiful son, the one that even though he never spoke a word, never touched his feet to the ground has made a permanent mark on my heart on my soul and in the hearts of many others.