Wednesday, August 20, 2014

Scar Tissue Part 2


" Your baby has a condition that is not compatible with life" this is what they said......this is what I heard, "Your baby will die." Later I would find out that Cady had what  is called tripoidy. (http://www.healthline.com/health/triploidy#Overview1 ).  Essentially 2 sperm fertilized 1 egg so she had an entire extra set of chromosomes. Only about 1 percent of conceptions are triploid.....it just doesnt happen that often. 

Triploidy is a lethal condition. Fetuses with the abnormality rarely survive to birth. Many are spontaneously miscarried during the first trimester or stillborn before reaching full-term. The few infants that do survive to term will have severe and multiple birth defects. These might include growth retardation, heart defects, and neural tube defects (Spina bifida). Infants born with Triploidy typically will not live more than a few days after delivery

 I can remember my OB telling me that I had given her a safe place to live and she just didn't want to let go. That really didn't make me feel much better, but I didn't feel like such a failure knowing that my womb was doing its God Given job. The question now became, what do we do?  Do we wait to deliver her when she is ready, perhaps 10-12 more weeks? Do we induce labor now? I just wanted someone to tell me what to do.

Triploidy cannot be treated or cured. Pregnancies that last until the baby is delivered are rare. In the event an infant does survive, doctors and healthcare providers usually provide palliative care. Medicinal and surgical treatments are not used due to the ultimate lethal nature of the condition.

 Numbness had set in and I had become a different person. There was no joy, no love, no hope. We decided to call our priest, that would help, he would help. Long story short, my husband lost his faith that day. We were turned away, made to feel like we were doing something wrong, and told that the "church" would not condone or support an induction because it would be considered, in their eyes, as an abortion.(even though she could not, would not , survive ). When we asked if someone would at least come to baptize her when she was born, they denied....."you can just do it yourself" they said. The last place that I expected to feel rejection was at my church. We needed help, support , Christ-like unconditional love. What we got was......well, nothing. 
Days of tears and sleepless nights followed. I wrestled with all of my inner demons, I'm bad, I'm flawed, I'm wrong. With a long history of depression, I started to slip into a very dark place. I wasnt even sure that my womb was safe anymore. 
We made the decision to induce labor. I was sick, depressed and Cadys outcome would not be any different had we waited any longer. I checked into Labor and Delivery, I didn't get to pick out an outfit for Cady to go home in, she already had a closet full of clothes, but went into L and D with a small bag my mom packed.  I didn't even care. This was a nightmare. The L and D staff met us with somber half smiles and well meaning pats on the back, no words exchanged, just a gown given and the lights dimmed. The rest of that day was a blur. I wanted my mom to be with us, I wasn't sure how I was going to deal with this and my husband would need support. The doctor on call arrived and began the induction. Over the next few hours, I remember specific events. I was on a sedative so my memory is a bit cloudy. I remember a nurse coming in and crying. She said that there was a couple down the hall having a healthy baby that they didn't want and she was having a hard time seeing us so devastated and so desperate for a healthy baby of our own. I recall the room staying dark. I know our friends Rob and Sarah came to see us and to cry with us. I kind of just wanted to die. Another nurse came to ask if we wanted Cady to be cremated. Oh God. How do you even make that decision. I think I blacked out. We did decide to have her hand and footprints done after birth but we requested no photos. I regret that decision almost everyday. As I began to dilate, my doctor gave us a grim warning. "Don't be surprised if Cady takes a breath or two immediately after delivery. Please don't mistake this for her trying to survive, she can not." Please God, don't let her take a breath. Please give us this one wish. Please. 
I then remember getting up to use the restroom. Once I sat down, I felt tremendous pressure. I yelled and screamed for Chris. "Shes coming! Get me back to bed! I cant deliver her in here!" In the nick of time, I laid down, no time for the doctor to get there, she was coming and Chris was there. Somehow he managed to get gloves and a gown on...... he delivered our baby. She did not take a breath. 
My OB arrived shortly after this and handed her to me. She looked like Chris. She was a tiny baby bird, eyes closed, she was beautiful. My mom baptized her. I remember asking her to do it again....just in case. We all held her, smiled and tried to take it all in. I don't know how long I held her, it never would have been long enough. Finally I had to let her go. I can not tell you how hard it was to hand her over to the nurse knowing that I would never see her again. The nurse, tears in her eyes, took my baby and left.
The next couple of weeks and months were a bit of a haze. I had to go back to work and I was asked almost everyday when I was due....I wanted to wear a sign around my neck that said "my baby died". 
About 2 weeks after I returned to work I got a call during a case. I'm not sure who called, but they said that they had Cady's ashes and I could come pick them up when every I was ready.....pretty sure Id never be ready for that ......but it needed to be done. 
I walked down to the lobby and met a very nice looking lady who handed me a brown heart shaped box. She gave me a hug and left. I literally sat down on the floor of the Trauma Center lobby , holding a box of ashes and I cried. I had to go back to work....what did I do with the box, our daughter? Did I put her in my locker? Did I bring her into the OR? What if someone threw her out after the case. There were no answers. I was certain, right around this time, that I would never be the same. 

Scar Tissue Part 1


It is every year right around this time, August 21 to be exact, that I put up a veiled post on facebook, mention the Cady Kathleen, remind my friends how old she would be, and spend some time reading all of the cards and notes I saved from all those years ago. I suppose that doing this is therapy of some sort and is surely making me stronger, better, recovered etc, etc, etc..... But, I feel like part of me is just still trying to catch a glimpse of who I was before she died. 

I have issues. Well, we ALL have issues but I will admit that mine can be overwhelming...for me and for my family. I can remember a time.....about 16-17 years ago, when I had no fear. I tried new things, I flew in a 2 seater plane, I traveled , I swam in the ocean, I got a tattoo, I loved hard.....I was ALIVE. During this time I met my husband ,  quickly and madly fell in love and was engaged 4 months later. Shortly after our wedding, our close friend was diagnosed with pancreatic cancer at age 39. He died a few short months later leaving behind a young wife and 3 small children. It was in watching this horror story transpire that we made the decision to jump head first into parenthood. Life was precious and fragile and time was not meant to be wasted.

We were married on March 18 and I was pregnant by the end of the month. I was 24 years old. 

I can remember anticipating our ultrasound with mad excitement. Were we having a girl or a boy? Would she have my nose or Chris's eyes? Long lanky limbs? Blonde hair or brown? We bought a crib, I pained our guest bedroom a soothing light blue color and found the perfect Moon and Stars bedding suitable for either a boy or a girl. I sat in there with my heart full of love for this little nugget that was nestled so snugly inside of my safe belly.  

The ultrasound day arrived, just a routine, mid term ultrasound.....really though, for us, it was purely to find out if our nugget was a Little Chris or a Little E. My mom wanted to join us as this was her first grandchild, Im her oldest daughter and well, I just wanted her there to share in the excitement. I remember wearing a denim jumper... ( yes I wore a denim jumper, no comment). My mom had given it to me from her closet, she thought it would be the perfect maternity dress. It had one big pocket on the front. Yuck:). Anyways, moving on.... C and I both worked at Vanderbilt, so naturally my prenatal care would be done there on campus. The three of us waited patiently for my ultrasound. I remember drinking lots of water just to be sure we got the best view of baby Roman, I wanted to leave there knowing for sure if we were expecting a boy or a girl! It never crossed my mind that anything could be wrong. 

Finally it was our turn. We piled into the little dark room, giddy with excitement. I hoped up on the table and got ready to see the baby. The sonographer came in and entered what seemed like a ridiculous amount of information into the computer,made idle chit chat, turned the monitor so I had a good view and then FINALLY readied the ultrasound probe and placed the warm jelly on my tummy. YAY! Here it was, my heart was racing I was beyond excited. I turned my head to the right to see the monitor. She moved the probe all around, up,down, side to side....often times putting quite a bit of pressure on my belly. She asked me how far along I was again. Then she turned the monitor away, I couldnt see the baby anymore. I asked if she could tell if we were having a boy or a girl. She said, " Um, yes, its a girl." But why did her voice change? Why did she turn the monitor away? What was happening? I asked Chris, he just shook his head and shrugged his shoulders. The sonographer then stood up and said that she needed to get the radiologist. That wasnt normal was it? I looked at my mom. I could see that her brow was furrowed and she looked confused. 

When the sonographer  returned, she turned off the ultraound machine and said I could get dressed. Why didnt I get one of those  little black and white pictures for our baby book? What was happening! She said that my OB wanted to see us. So the 3 of us shuffled quietly across the street, me back in my denim jumper, Chris staring straight ahead and my mom holding my hand. When we arrived to check in, they immediately ushered us back to an open room. My chart was on the door along with a box of kleenex. Remember though that we still knew NOTHING. I looked at Chris and asked why there were kleenex on the door. Was something wrong with the baby? Did they make a mistake? This was not good and my heart sank. We waited now in a bright sterile exam room with a box of kleenex on the table between us.Was I supposed to be crying? What for? My OB finally peeked her head in and asked us to come to her office, so we could have some space. What the hell was going on? 

She sat down and said something like, " Your ultrasound shows that there is something wrong with your baby." I kind of stopped listening after that. The room started spinning, I saw black, I stopped feeling for a moment.  My initial thoughts were how was I going to care for a special needs child...(I still felt like a child myself, actually, at 24 I was).... what kind of quality of life would she have, what did I do wrong, why me? I then remember breaking out into violent sobs, unabashedly wailing with pure grief. Im sure that the entire office heard me and I really didnt care. My world had been rocked and I didnt even know what the diagnosis was. Chris didnt know what to do with me . After a few minutes and a few choked sobs of his own, he went into his default Doctor mode and asked our OB what was next. She said that I needed an amniocentesis to confirm what the u/s showed, and I still had no idea what that even was, i just knew it was bad. She suggested we go for coffee while she tried to get us in to see the high risk OB that afternoon for an amnio. Coffee?! I was pregnant, coffee was a no-no right? Why was she suggesting that? So off we shuffled down the street to Starbucks. We really had nothing to say. My phone rang about an hour later. It was our OB. She said that she got us an appt first thing the next morning. She told Chris that she called me in a prescription for xanax, to give me one when we got home so I could rest. I looked at him like he had 2 heads. I couldnt take xanax while I was pregnant. That would hurt the baby. Chris looked at me as said that clearly the side effects of the xanax on the baby were the least of our concerns. This was just getting worse by the minute. That was one of the longest nights of my life. 

The next day I was the first appointment the the high risk clinic. Actually, I think the doc came in early and put me on the schedule first as a favor. I was scared. I was alone. Chris was a surgical resident and had to work. I remember seeing the huge needle, the blue colored fluid and thinking that this was not how it was supposed to be. The amnio hurt, a lot. But little baby girl loved the extra fluid that was now surrounding her. The doctor even said.....look at her swim!....she loves the water. Is she ok I asked, I didnt even hear what he said....I was too busy watching my baby swim. I went home and waited.




Scar Tissue Part 3


Cady Kathleen Roman was born August 21. Cady Kathleen Roman died August 21. My mom and Chris and I think my sister,  dismantled the crib, took everything off the walls and packed away every trace of our child. I had told them that I didnt want to walk in there and see anything that reminded me of her, so to please get rid of it all.  For a long while after that, I had a very hard time even looking at anyone who was pregnant. I resented them. I was angry. I know that anger is one of the many stages of grief and I was grieving hard. I isolated myself. I went through the motions of living. I was not a nice person. We decided to go away for a bit. We went out to Colorado. Our nieces lived there. They were so little and I could not look at them with out breaking down in tears. We had lots of talks out there in the mountains, shed lots of tears and somehow managed to survive. 
We were told to wait a year to try to get pregnant again, my body and mind needed rest, I had just delivered a baby. That was the plan.....well, I guess that was the plan. It was kind of unspoken. I remember October rolling around and thinking that it was time, against all advice except what I knew to be right in my heart.....Chris's birthday was the 19th and in his card, I wrote, "I'm ready to try again". He was thrilled of course, not only had he lost his daughter, he was quickly losing his wife..... I had become a shell of a human....... it was this decision , to try again , that ultimately saved me. It didn't take long and I was pregnant again. I knew that this was the right thing to do. Having another human depending on me for survival shook me out of the hell that I called my life. I was cautious, obnoxiously so.....afraid at every OB visit, fearing sometimes even expecting ,loss again. Time went by, weeks into months and months in to a term pregnancy. We made it. I gave birth to our second daughter July 13, 2001, less than one year after burying Cady. 
Since then, we suffered another loss (another story entirely) but also had another sweet baby girl ,Maddox, in 2005. Noting that our  50 % success rate on delivering healthy babies (G4 P2) was not really ideal, our doctor agreed to a tubal ligation....mentally, emotionally and physically....I could not get pregnant again. 
Fast forward to today, 14 years later. I still bear the scars of this loss. You cant see them, I keep them hidden.....However,  I worry, excessively so sometimes, about my kids and their well being.Thank God I have Chris. He keeps me sane and grounded and is constantly reassuring me that all is well.  I guess when you experience loss, it takes time to trust again. My work in this lifetime is to learn to trust again. To trust that all is exactly as it should be, to not expect the worst (because you might actually get the best) and to know that life is not to be feared. I try to not project my worry onto my kids and believe it or not, my oldest daughter is often my voice of reason. She has perfected the phrase...."don't worry Mommy.". I say it all the time, our kids are our greatest teachers. They see life through a pure and innocent lens and remind us to be thankful. I am still very much in process and have a lot of work to do, but these days, I can pick my battles with greater ease. I'm learning to trust and am often putting myself in situations that require me to trust those around me, complete strangers sometimes. I'm slowly fanning my girl's wings and encouraging them to learn to fly and to trust. I was given this gift of two amazing healthy daughters. I do not take that responsibility lightly. I prayed for these kids, to be given the chance of motherhood again.  My kids come first, it is their time....such a fleeting, precious time......
Sometimes it takes an injury, often a significant injury to give us a chance to rebuild what was broken. And more often than not..... That place that was weak and hopeless becomes a place that is stronger than the rest. We are all fighting our own battles. Some public, some silent and mine is no more significant than any other.....but we are all warriors. Happy Birthday Sweet Cady. Mommy loves you.