Healing Week 2

I believe the worst part is over.

I think of our boy many many times a day but now that his ashes are home, I feel like a page was turned. 

Bringing him home was difficult. I had pictured it so differently...

I had imagined Francis and I, two proud yet paranoid parents, walking in the door, not knowing what to show the little guy first: his room, Chinook, the backyard? I pictured lying him down on our bed and enjoying  having time with him by myself, away from the hospital. I would play him some records, the ones I listened to while I was pregnant, making sure he was properly introduced to music. I'd change him into his awesome PJs we picked out for him on our first trip to the store. I'd show him how soft Chinook's fur is. There would be hundreds of pictures and a multitude of oohs and ahhhs.... Then if I was lucky I could get an hour or so of sleep next to him near the fireplace (Hey it's a dream, it doesn't need to be realistic).

Instead, I walked in the door with a little urn wrapped in a velvet bag and some legal documents. I hugged that little bag, as pathetic as that sounds, and welcomed him home nonetheless. With time, we will find a place to scatter the ashes. We have already received as a gift a beautiful sculpture to mark the spot. 

I find it rather sad that nobody other than Francis and myself got to hold him. I feel like he's a fleeting memory to them, that he will be very easily forgotten. I remind myself that others are loving him by showing him respect through their sympathies. When the cards and emails stop coming in, when people expect you to be happy and move on, that's when it hits you. We can't expect others to feel as strongly about him as we do. Physical contact changes everything. To other people going through this, I would urge them to consider inviting those close to you to the hospital...so they can hold your baby too, so you have that memory to share with them.

Our first post-termination medical appointment went well. My doctor only asked questions to make sure we were doing OK both physically and emotionally. I wasn't poked or prodded in any way. We are expecting a call from CHEO for a genetic counselling session soon. I don't know anybody who went through this process so I am curious as to what our options are and what lies ahead. We will keep you posted on our findings...

We are now both back at work. We were very lucky to have had the opportunity to stay away for so long. It allowed us to deal with our emotions rather than evade them. It gave me time to properly thank the medical staff for all they have done for me. It allowed me enough time to heal physically as well. Normally I advise people to keep busy when they go through difficult times, but in cases like this, I think it's important to take the time to focus on feelings and allowing yourself to cry. Trying to bypass grieving stages is not wise in the long run.

On Being Brave

I never considered myself to be a very brave person. As a matter of fact, I tend to get down on myself for letting fear get in the way of my dreams. So it came as a bit of a surprise to me to see that's how people felt about me and how I faced this situation. 

I am flattered, but I would like to say that I can't imagine how anybody could live through what we did without appearing courageous to others. I was not brave for terminating. I chose that path because I felt it was right. The women who decide to continue the pregnancy are just as brave for following their own moral compasses. 

I will take credit for one tiny thing though, and maybe that's what most of you meant when you called me brave: I told the truth about what happened. Some women can't find the strength to do that. However, I know a lot of them don't have the luxury of having supportive family and friends like I do. So thank you. Thank you for making it easy to be honest, to be brave.

Have a great week everyone.

Healing - Week 1

Physical Healing

The most difficult part this week was not the bleeding or muscle soreness or even the milk coming in, it was having to stay busy without being physically active. It seemed every time I pushed myself my bleeding got worse, and I would have to lay back down starring at the ceiling, having nothing to do but think. Those who know me well know how dangerous that is.

Having said that, the physical healing was, and continues to be a bit of a challenge.

The first few days weren't as bad as I expected them to be. Emotionally it was very difficult but physically, other than exhaustion and stiffness, I felt OK. The bleeding was under control, the IV bruising started healing, my headaches were going away. Then the milk came in....

Milk coming in is excruciating painful when your need to let it pass. Your hormones try their best to convince you that you should be breastfeeding an infant. Normally a mother would welcome this milestone. In cases like mine, you count the days until it's over, applying ice packs, avoiding showers and losing sleep because of the discomfort. It's especially difficult because everyone wants to give you hugs and even the slightest of pressure makes you feel like veins will break and skin will tear.

Luckily, the worse of the pain only lasted 3-4 days.

I am guessing that the same hormones that made the milk come in then try to shrink your uterus back to its normal size , giving you cramps and ejecting any foreign tissue or blood clots along the way (I realize this may be too much information for some). It's not as bad as it sounds, I didn't take any pain relief medication because I wanted to feel how it was progressing.

It's been over a week now and I think most of the bleeding is over. When I press below my navel it feels like it did before I was pregnant. It's with both relief and great sadness that I find my body returning back to the person I was before our little boy came along.

Emotional Healing

The grieving process has been very confusing. It is hard to allow yourself to feel sad when it was your decision. It is hard to grieve a little boy that never was. What you grieve for instead are the dreams you had for him. You grieve the vision you had of yourself as a parent. If it wasn't for the fact I held him in my arms I wouldn't know who to grieve.

I go through what-if scenarios, I doubt my decision, I feel horrible, I feel relieved, I feel horrible because I feel relieved. Then I have a moment where I feel things will be OK. It is quickly followed by the dread that I might not be coping correctly, that I will spiral back into grief forever. Some days I fear the opposite, that I will forget him with time. I already feel disconnected with the picture of me holding our boy. I want to go back there and see his face again, feel the strangely serene emotions that overtook me as I was holding him.

I cry often...I cried when I put away my maternity clothing and books, I cried when I filled his memory box with little things I had bought for him...I will surely cry again when I pick up his ashes from the funeral home. I already know Christmas will be difficult and that February 23rd will be a sad reminder of a milestone that will never be. There are still a lot of tears to come. I'm not going to pretend otherwise.

On a side note, I read that a lot of grieving mothers have a hard time being around pregnant women or babies. I seem to be OK with it. I suppose everyone deals differently. What I do find extremely difficult is seeing parents being rudely impatient with their children. Then again, I felt that way before as well...it has just intensified. I know I will crack and do the same one day but right now, it just seems to me like everyone who has healthy children should consider themselves lucky and not sweat the small stuff.

Grieving without Faith

I cannot conceive of a God who rewards and punishes his creatures, or has a will of the kind that we experience in ourselves. Neither can I nor would I want to conceive of an individual that survives his physical death; let feeble souls, from fear or absurd egoism, cherish such thoughts. I am satisfied with the mystery of the eternity of life and with the awareness and a glimpse of the marvelous structure of the existing world, together with the devoted striving to comprehend a portion, be it ever so tiny, of the Reason that manifests itself in nature. (Albert Einstein, The World as I See It)

Many who have faith in a supreme being can't imagine how difficult it must be to accept death without the promise of an afterlife. Death and spirituality often go hand in hand.

Now that I have lost a child, I can see how picturing my little boy in a happy place looking after me could be comforting. It is a romantic idea. However, it is not part of my belief system.

It's not my belief that this happened for a reason. It's not my belief that this was part of some elaborate plan. It's not my belief that my boy is still consciously alive somewhere.

What I believe is that he lives through me and through Francis because we will remember him always. I believe I can always call on him and talk to him through the emotions and memories he stirs inside me.   I believe that what my boy and I had to go through was an unfortunate coincidence rather than some divine planned out event.

Believing this certainly makes it easier to heal. There is less guilt, less anger, less feeling of being dejected when you know genetic anomalies is a natural part of life,  that the odds just sucked this time around,  that there was nothing you did that caused this to happen.

Just as many find solace in a supreme being , I find solace in believing we are truly free, masters of our own fate. It is with that belief that I will continue to heal.

Tips on Surviving the First Week

• Watch baby-free movies. No tear jerkers. No chick flicks. I dove into the Harry Potter series.
• Visit http://www.aheartbreakingchoice.com/. Yes you'll cry but it will be good "hey I'm not alone" tears.
• Don't rush into having people over. You need alone time. Lots of it.
• Accept help graciously. 
• Eat well. This is not the time to punish your body. If you don't feel like cooking, see point above.
• Sleep well. If you find this difficult because of pain, consider medication.
• Get fresh air. Walk in a natural environment if you can, even if just a little bit. 
• Remember you are still alive. Do a little something you love every day.
• Take this tragedy as an opportunity to grow, to strive to live a better life. Honor your child through positive change.
• Understand things will get better and be reassured you will never forget your child. If you must, establish new family rituals that will reassure you of that fact. 

Heartbreaking news

Amniocentesis Results

On Monday morning, CHEO left a message asking us to call them back. I remembered them telling us that normally if the amnio results were bad, the call would come from our family doctor so I had my hopes up the results were good. I couldn't wait to find out if it was a boy or girl, and to hear everything would be OK.

I waited patiently at home for some news. I saw Francis pull in the driveway and got nervous. Francis came in, looked at me with the most pitiful look I had ever seen and started crying. I thought for a second it was of joy. He told me things weren't OK. That the baby tested positive for Trisomy 21. It didn't make sense in my head. Our odds were good. Everything was fine up to now. We had seen the ultrasound, our bloodwork didn't seem to worry our doctor or the genetic councilor.

I called CHEO for more information. We were told the results took everyone by surprise, including the technicians and doctors who had looked at my blood work and ultrasounds thus far. We had very low chances. We were 1:110. But we were that 1. I quietly asked if I was carrying a boy or girl.

The councilor didn't seem to want to tell me. She asked me if I was sure I wanted to know. I did. A little boy, she said. I asked what the next steps were. She said we had decisions to make, and that our doctor would be the one to arrange anything should we decide to terminate.

Decision

Francis and I were a mess the rest of the day. We felt guilt and sadness and disbelief and like everything around us was falling apart. Telling our parents was immensely difficult. We knew it would break their hearts. We also knew they would be there for us no matter what our decision was, and that helped greatly.

Most of all, what made me shed tear after tear after tear was that my baby boy was sick . Parents want only the best for their children, and I suppose that was our first true experience as parents.

Francis and I talked a lot. I researched. I learned about all the physical issues associated with Down Syndrome. I read about the chances of our boy being highly functioning. I read about all the problems our child could face as a newborn, toddler and into adulthood. I read about all the wonderful examples of children and adults with Down Syndrome who have pushed their own limits and lead fulfilling lives. I read about the majority of others affected who are not as successful. I read about leukemia and early Alzheimer and all other diseases closely linked with Trisomy 21. I read about how other parents in our situation had dealt with the decision. It comforted me to know we weren't alone. It lifted some guilt to know that we were part of a very big majority (90%) who considered termination. It's not something people speak of openly. It makes people uncomfortable, and with good reason.

When people think of terminating a pregnancy with a child with Down Syndrome, they associate it with discrimination. They assume the parents terminate because they will not have a "perfect" child. That is not the case, let me assure you.

With the knowledge we needed, and with our personal experiences, we decided that terminating would be the right decision for the baby and ourselves. Admitting that brought a mixed bag of emotions.

Termination 

We met with my doctor Wednesday and informed her of our decision. I had a lot of questions about the actual termination procedure.

This is difficult to write but I feel that I owe it to all the other ladies who opened up online and helped me through this decision.

(http://www.aheartbreakingchoice.com/T21/NoRight.aspx really relates to our story).

Unfortunately, prenatal diagnosis normally happens in the second trimester, and so the pregnancy is quite far along by the time a decision can be made. When you are past a certain number of weeks, I believe it is 18, a Dilation and Evacuation (d&e) can't occur. In my case, terminating will mean induction and labour. It's exactly the same process as a full term birth but with chemical induction and the mother is given morphine to ease the pain. One of the risks is that the placenta isn't ejected along with the baby. If this happens, a curettage happens under full anesthesia.

I'm scared. I'm scared because I know being induced is painful. I'm scared to give birth without the happiness that comes with it. I'm scared to see my tiny baby boy, even for a second. I'm scared he will somehow feel pain or feel unloved. I'm scared of the recovery. I'm scared of the emotions that will happen later.

We are on a waiting list at the hospital. We were supposed to start induction this morning but we keep getting bumped because of emergencies. The wait is horrible...but we are trying to make the most of it.

Yesterday Francis and I tried to do things that bring us joy, things we wanted to share with him before he leaves us. We went for walks in the forest to look at the beautiful leaves. We rested in bed and Francis played lullabies on his acoustic guitar near my belly while I just sat there and cried. I talked to him and told him it wasn't his fault and that I was so sorry he wasn't healthy. I told him I would do everything I could so that he didn't feel pain. I would take care of him the best I could. I told him I'm not a perfect mother and this isn't a perfect world and I hoped he understood and could feel that I was being truthful. I told him I would try to live better for him...that I would learn from his brief time with me. That I don't regret having him in my life. That his life would not be in vain.

We know we will remember him always, but we would also like concrete reminders of what he has taught us. He will always be my first child. Perhaps I could plant sunflowers every year, since it was my first time doing so this year and the growth of the flowers from seed to flower coincided with his brief life. Francis would like to record his lullaby. I would like to have a special place in the forest where I can go to think of him....

Update: Termination

I was sitting updating the blog when the hospital called us in. We checked into the birthing centre at 3:30pm.

Again, this is not easy to write but I really feel it's important for me to do so...

The staff at Montfort was outstanding from the start. They showed us to our room, they explained what would happen next. A doctor came in and answered all our questions. He told us, like I had read, that 90% of people faced with our decision choose to do the same difficult choice for their child. He felt it was the right choice. He saw I was very quiet and told us we shouldn't feel guilty. I asked if anything he was going to do would hurt our baby. He said no, that a lot of research showed he would not suffer. He reassured us and was a source of great comfort. The nurse stood by and later told us she was touched by the conversation we had.

The doctor inserted the first induction pills and told us that every 4 hours I would get another dose. That I would need about 3- 4 doses before big contractions would start. That would mean 24-48 hours in the hospital.

At 8 pm, my family doctor came by and said she wasn't keen on a 48 hour estimate they gave me. She increased the dosage and inserted my second dose.

A few hours later mild cramps started and I got really big chills. I couldn't zip up my hoodie I was shaking so much. Francis tried to warm me up in my hospital bed but after they got worse we called the nurse in. We learned labour pains causes adrenalin to rise, that it happens quite often. I took a bath to help.

4 hours later, my third dose was inserted. I was given a sleeping pill because the doctors felt it was important for me to get sleep but knew it would be difficult to do so with the cramps. The cramps got progressively worse. I tried to sleep but there was just too much pain. Whatever pill they gave me didn't work. I ended up in the bathroom vomiting over and over. I was offered a gravol shot but refused it. I'm not a huge fan of needles. An hour or so later I was back in the bathroom vomiting away. Francis couldn't stand it anymore and called the nurse back in. She injected me with the gravol. I really wanted to rest at this point. 4 am was approaching and I knew the next dose was coming. Poor Francis hadn't slept yet and was at my bedside the whole time either holding my hand or playing in my hair.

The gravol didn't work. I was sick again, this time too weak to make it to the bathroom. The nurse felt it was time for the morphine. I didn't fight it. The IV insertion process is painful and in my case they had a hard time so they had to do it twice. Francis looked like he wanted to throw something when he saw the additional pain I was going through. The morphine wasn't what I expected. I felt aware and the pain was still there but it became much more bearable. I had a hard time keeping my eyes open. I was instructed to press a button anytime I felt I needed it. They explained it was not dangerous because they had programmed my max doses in the machine. I couldn't exceed my max even if I kept pressing away. I managed to sleep for an hour or so on and off. Francis slept for an hour or so as well.

At around 6am my contractions started. They startled me a bit because they felt a bit like stomach cramps. I kept moving from my bed to the bathroom. When the nurse came in around 7:45, I told her about the contractions. She checked and said she could see the baby's head so she rushed off to call the doctor. She teased me a bit for my morphine trigger finger. I had pressed 90 times but my max dosage limit had limited me to only 30-some shots. I'm a morphine junkie. Who knew...

Francis had gone to get a coffee so I texted him and told him to hurry upstairs. I was told not to push even though my instincts told me to. She prepared the bed for delivery. My doctor came in and helped me through it. Our boy was dead at birth. They cleaned him up and left us alone so we could hold him and say goodbye. I held his tiny little hand and looked down on him with as much love as any parent. I was happy to finally meet him face to face.

I needed a curettage after delivery. Normally they do it under general anesthesia but it would have meant a longer wait. The doctor suggested doing it with only morphine. I wanted to get it over with so accepted. It was painful even with morphine. Francis' hand was squished during the 15-20 minutes it took.

Because I was less than 20 weeks pregnant and he only weighed 300 grams, the legalities were simple. I asked for his body to be cremated through our local funeral home. I didn't want our boy to be treated as medical waste. I also thought it would be nice if we could spread his ashes in the forest.

The staff at Montfort gave us a memory box which contained his bracelet, hand prints and footprints. My doctor took pictures of him in his tiny little woolen hat for us. Francis got a good shot of me holding him. We left the hospital and our boy behind. It was difficult for me to walk out.

We drove home exhausted and slept for 14 hours. I cried when I woke up and instinctively touched my belly as I had done for the last 5 months. I felt empty.

We had to head to the funeral home to sign papers. I cried there too as I signed the forms as the deceased's mother.

I miss him. A lot. I miss talking to him about the world and all the great things he would see and experience. I'm sad he was sick. I'm sad I wasn't able to make it all better.

But we still feel our decision was the right one. We are happy he never suffered.

We are grateful for the support of our friends and family. It came in various forms..from emails to flowers to a freezer full of home made meals. We are very lucky.

His story doesn't end here. Neither will this blog. I intend on updating it with our healing process. I really hope this finds other mothers and couples in our situation. It is my goal to break the silence and speak truthfully about the heartbreaking decision many of us have to make.