Søren at 8 weeks gestation - Hi Mum and Dad!

The Beginning

We had a lot of worries with Søren. No real reason for them, we just did. Our miscarriages were always reminders for us and the only real reason for the fears we were harbouring. Loss can do that to people; it makes them fearful, points out what's at stake, illuminates what can't be controlled. But aside from some annoying nasal conjestion, my pregnancy was completely uneventful. We had started to ease up, started to breathe evenly again. I had just picked out our stroller, a very hip and stylish piece of baby conveying equipment! I was really proud of that pram! I would actually 'visit' it at the neighbourhood baby shop, imagining it as a perfect reflection of the whimsical personality I perceived to be developing inside of me. I was really getting excited! I remember spending one afternoon observing mothers getting on and off the bus. Research I told myself, for when I have a baby, groceries, and a stroller corraled between two hands. Hmmm. Looks tough!

Then one day, I had a little bit of spotting. "Nothing to worry about" I told myself. We went to the hospital right away, just 'in case'. No one seemed particularly worried about it, they did a trace of Søren's heartbeat, monitored my uterus for any activity and decided it was 'just one of those things'. Ok. I had anticipated an ultrasound but they didn't seem concerned. Did I blow it? Should I have been more assertive? Would they have seen anything? Unanswerable questions... The spotting tapered off over the following week.

Sunday night. More spotting. Fresher, brighter. Oh dear. We'll go right away in the morning. It just has got to be 'nothing to worry about'. I remember praying so hard that night for everything to be ok, fighting the sense of foreboding that had begun leaking into my brain and trickling down into my heart. The next morning we were off to the hospital, heading up on the bus, acting casual, laughing even. We'll go to a movie afterwards. How about Austin Powers? It will be good to laugh!

This time, they decide to do a pelvic exam, one midwife thought she was detecting a little uterine activity. We'll check, just in case. Ooo, grim look. Second opinion. Two grim looks. A bad discovery. Oh dear.

The next thing I know the room was filled with tense technicians, neonatologists, midwives, doctor's, anesthesiologists, the works. What is wrong?!! What they say can't really be true. I was 4 cm dialated, my membranes were protruding and Søren's feet were in them! How could this be? I was given drugs to stop the labour (which I was not feeling), steroids for his lungs, IVs, everything was ready for his arrival. We waited and waited. What a long night. But he never came that day. Nor the next. Or the next. I was confined to strict bedrest, only allowed to lie on one side or the other. I felt imprisoned, but the longer it went, the longer I felt I could go.

We had some scares - more bleeding, more steroids, magnesium to prevent Cerebral Palsy, long talks with specialists and NICU neonatologists. They're prepping us. They want us ready. They're showing us pictures of what to expect. Ok. We're ready. As much as we can be... The nursing staff is ready for us too. They've got the trolley outside my door, waiting. Daily traces of the baby's heartbeat reveal a "Happy baby!", a fact I found reassuring. As the days went by, we started to feel more and more confident that things were going to be alright. Every extra day increased our baby's chances by about 2 percent! My cervix had closed but thinned, the doctors were smiling, the nurses were happy, everyone was optimistic. I started to let down my guard. Our final ultrasound revealed a happy baby, just like they said. He sure had grown! I remember his beautiful face. And what a kicker he was that day!

Søren at 19 weeks - 2 months before he was born.

Søren's Birth

Two weeks after I was admitted to hospital, I went into labour. It was Saturday night. Don't go home tonight, Kieron. I feel funny, different. Don't go. At first I could hardly feel them, the contractions. I remember thinking, "Is that a contraction?" I remember saying, "I think I'm having contractions. I think...." They couldn't pick them up on the monitor. They must not be very strong then. There was something else as well. I was bleeding. In fact, I was bleeding more than usual. I know that woman bleed when they are in labour but this didn't feel right. Is this a bad sign? It must be. The resident is called. "Yes, I think you will have the baby tonight or tomorrow." Off to the labour ward, my third visit in all. What will it be like? "He is only 28.1 weeks, it should be rather quick. But there is a problem, his feet are at the cervix, we are afraid of the cord coming down before him."

Long night of waiting - 12 hours pass. Doctor's are in and out. They want to prepare me for a c-section, just in case, and yes, Kieron will be able to be there for the birth. With the epidural, I don't feel any of the contractions. Why haven't the membranes broken? This is mystifying and troubling. "We can't break them for fear of the cord." Yes...well. More blood. Big chunks of blood. Oh, oh, what's that? Lot's and lot's of blood. Stress. The baby's not doing very well. My blood pressure's dropping. What's happening to me?... "I'm sorry, Karin. We are taking you to theatre. We need to do an emergency ceasarian. I'm so sorry." She looks so upset, my surgeon. I don't want one. I'm afraid. Is the baby ok?? A tearful goodbye to Kieron. He won't see his baby being born. I want him to be there, I need him with us and I can't do anything about it! My heart splinters. We leave him at the door, to wait and worry alone. He later tells me he thought we both were going to die and he'd be left all alone.

The Next Few Days

Søren is born. They say to Kieron, this is a very sick baby. He thinks, of course - he's only 28.1 weeks, the neonatologist has already warned us of possible breathing complications. We were prepped, remember? And based on statistics, he has an excellent chance! I'm groggy, trying to come around, trying to work my legs. Kieron is so excited. He beams at me, we have a boy! We always knew he was going to be a boy, everyone said so. He shows me a polaroid of a little fellow lying on a table, tape holding tubes in place, a little blue blanket with teddy bears covering him. That's him. Really? I wish I could see him better...remove all those tubes and wires. What a sweet little head, I like his head. And those feet, they are endearing. So those are the famous feet that have been so much trouble! When can we see him? I wonder when I will get to finally hold him?

They are working to stablize him, he's in Level 3 care - the highest a baby can go. They never said he was so sick he would die. But, there are problems. The doctor says, your amnionic fluid was infected and very smelly. No! Søren was very compromised during the birth. He has suffered a brain haemorrhage and he's septic. He is having problems breathing, his lungs are white. They do a scan of his brain - grade 3 bleeding is detected. This could be bad. He has an infection too - we don't know what it is. He is suffering from complete renal failure - his kidneys won't work. Do we want him baptised? NO. That will mean he is going to die. I don't want him to die! Kieron organizes the baptism. I don't want to go for fear that he will die. Bev, my nurse, gently encourages me to go, Søren will need his mother there. We go down to the nursery, it's only the second time I've gone down. But, I can't get near Søren. I am on a bed and can't see or hold him. What should I do? Should I be talking to him? What does he look like? He is so far away. Can't they see that he needs me? Maybe if I feed him he'll recover. Shouldn't we be pumping my breasts? Maybe tommorrow, Bev says. The priest is crying at the baptism. What does he know that I don't know??

Søren will make it. He's got such strong willed parents that some of that tenacity has got to wear off onto him. I'm sure he'll be fine. Maybe not perfect, but that is ok. We love him the way that he is. They wake us in the middle of the night. "Søren's not doing very well. We are having trouble stablizing him. We are giving him less than a 50% chance of making it through the night." Kieron goes down to be with him. I want to go. Should I go? Everyone wants me to rest. It's so hard to rest when I know that I should be with my baby.

In the morning, he is still unstable but he's putting up a fight. Another day of praying for him. Maybe he'll be ok. Maybe he'll make it! After all, they said that babies have their up's and down's in the NICU. I'm getting a little bit more mobile and can see him better. They have gotten me into a wheelchair and I sit there and stare at him. He's a very sweet little lad. He looks a little like my great Uncle Carl. But mostly, he looks like Kieron. Back and forth, nursery, room. Should we pump my breasts yet? Not yet. Tomorrow.

Tomorrow comes

"We have a very sick baby here." The list of problems grows. The neotatologist goes over every single one of them while we sit at Søren's side. I'm staring at our son, watching the air puff into him at rapid speed. He's on a high frequency ventilator and I sit and watch the numbers and listen to the clicks and beeps. The other parents who are keeping a vigil over their own sick babies are aware. I watch a tiny infant, much smaller than Søren, give a few energetic kicks and realize I haven't even seen my own son move. The only thing I saw him do was curl his right index finger up to his palm. And that was yesterday. I feel faint. I have a headache. I can't listen to this. What? What did you say? Let's take Mum out. I think Mum's a little overwhelmed. This is too much for Mum. She needs a rest. Cry, cry, cry. What do we do?? Get a second opinion, for our own peace of mind. The second opinion doctor is iritatingly softspoken and speaks with heartfelt insincerity. I don't like him right from the start. I want to shout, WHATDOWEDO?? But, I don't, I'm too polite. He tells us all of the gruesome details of what Søren will go through over the next few days, putting images in our minds that we will never be able to erase. Does he ever say that he is dying? No.

We have to decide for ourselves that our little boy is dying, and that he should come off life support. We don't want him to suffer. Does this second opinion doctor think that we do? Is that why he thinks we should hear these gruesome details? Why is he torturing us? I lash out at him. He must think I am hysterical. We go down to see Søren again. Kieron is trying to get friends to bring more film. The technicians are doing another brain scan. My mum calls and I choke into the phone,"He's not going to make it!!

"We'll be there as soon as we can." She crys. I feel another mother watching me. Her eyes tell me she's horrified for us. I also know that she is relieved for herself. I would feel the same. Days later, she comes up to me when we are leaving and gives me a big hug and simple says,"You are in my thoughts."

We need to let Søren go. Yes, we can do this. Now what? What do we do? Who do we talk to? Will Kieron have time to run home and get the Winnie the Pooh book that we got for him before he was conceived? He's distraught, hysterical. "I want to get his book!! We make sure nothing can happen until Kieron gets back with that book.

Søren's Last Few Hours

Finally. We sit with him. Finally. We hold him. We rock him in the rocking chair. He is very still, but alive. Kieron reads his own favorite Winnie the Pooh stories to him and tells him about our families. We have a captive audience because of his wonderfully clear voice. We even smiled a few times and chucked at the stories between our tears. We tell him how much we were looking forward to raising him and being his parents. I sit and stare at him and try to kiss him, but I can barely reach his forehead. He's wonderfully warm and so, so soft. It bothers me that the ventilator is making a dent in his chest. Can you stop that please? It's making a red mark. I don't like that. It's crushing him. Trish, his special nurse, fiddles with it, trying to make it better. Thank God for Trish. It is so wonderful to finally hold our son. So wonderful. So brief. After many hours, we decide. Ok. It's time. Yes, we will come back in a minute. They take us to the parents room while they remove all of the extra lines.

He's all dressed in a little blue sweater and cap that the hospital gave him. Trish put a nappy on him and he's wearing little booties. It's time. We watch as they remove the ventilator. Shock. The tube is so long. That tube was inside my little boy? Kieron holds him. Søren doesn't gasp or move. Instead he dies very peacefully. This shocks me too. I don't know what I thought would happen but I didn't think that the transition from living to dying would be so inperceptible. Was I expecting a fight? I feel like a terrible mother for wondering.

I'm glad he didn't struggle. Ever so glad of that. This is the first time we get to really see him without tape and tubes and I am amazed by his beauty. The doctor feels for his heartbeat. None.

We take him to the parents room where we can bath him and be with him. Kieron carries Søren as we proceed past all the other babies for the very last time. My eyes catch the movement of one little dark haired one, face all scrunched up, lips all pursed. I wish, I wish, I wish Søren could be like that baby, and not the silent bundle enveloped in Kieron arms. How I wish I could have heard him cry. Søren is such a beautiful baby, a lovely little lad. I love him. I love him deeply. I wanted to be a good mother for him. We take his foot prints and hand prints.

I ask, Have you ever done ear prints before? No! We do ear prints, Trish's first and last of Søren. She sets up the bath. Have you ever bathed a newborn before? No! Kieron bathes Søren, his first and last bath. The tape marks won't come off of his head. Can we get those tape marks off, off of his head please? Doesn't look like it. Oh well. Oh. Well.

It's time. We finally go back to our room, leaving Søren in the competent hands of his devoted nurse, Trish. We are so exhausted that we order pizza and sit in front of the T.V. They make sure we know - we can see him anytime. Anytime.

Søren having a beautiful bath

Nightmares. I wake hitting myself. Smack, smack on the abdomen. Ow! I worry about hurting myself. My wound. Oh, cry, cry, cry. Next morning, my milk comes in. Oh, how dare you!! What do I do with this? I am resentful of the nurses suggestions. Isn't there some baby out there who could use this? Søren can share. He won't mind. It hurts, it hurts! It hurts so much to be so useless. To be so childless. We go sit with Søren in the parents room and just cry, cry, cry. Night comes. More nightmares. Shaking, wailing, I wake hitting myself. Smack, smack. Cry, cry, cry. Kieron goes and gets Søren. I feel better just to see him again. He's cold. But he's still soft and he's still beautiful. He makes me feel validated. He makes me feel like a mother. I did have a baby. This one. Søren.

Friday comes, time to go home. I am able to walk around more and more and my infection seems to be clearing up. So, we try to spend one final day with our Søren. The peace of the day is spoiled for Kieron because he is having to make funeral arrangements with the crematorium and also he is having to do some work. Thankfully, he is able to spend time with Søren in the afternoon. I do a few drawings but mostly I just sit and stare, drinking in as much of my boy as I possibly can. Drinking in a lifetime of information in our last afternoon together as a family. We say goodbye. Leaving requires walking past the gift shop, a shop filled with little baby clothes and toys, a shop filled with 'It's a Boy!' balloons. What a stupid place for a shop! A sad reminder to me that no one gave us anything. People don't give presents to dead babies.

The Aftermath

Soren's funeral was small and private, only a few close friends and my own mom and dad. We played music that we had been listening to during the pregnancy - Billy Bragg, Philip Glass, Eric Satie. Beforehand, Kieron and my friend Jasna, did some molds of Sørens hands, feet and face. The face molds will be made into bronzes. Kieron describes it as one of the most pleasurable moments he spent with Søren because it was actually something that he got to DO with his son. We left Søren with two letters, one from Kieron and one from me, a photo of the three of us together, an origami dog, and a stuffed moose to watch over him. We placed the photo and letters in his hands, over his heart. And the moose and dog were wrapped up nice and snug next to his side.

This is the last time we saw our boy.

His ashes now occupy a space on the shelf, instead of photographs capturing his first smile.

My mom and Søren

Since then, we have had our ups and downs, good and bad days. We have come to realize that our lives are forever changed and so we do not expect things to ever really be the same. That doesn't mean that we can't laugh at funny things or enjoy ourselves. We do. There are some who may view Søren's death as a thing of the past. But the reality is this, every day is a day without our son. Our daily life is filled with the emptiness that his absence creates. We live in a quiet home without Søren. And this is difficult to endure, yet we will have to endure being without him for the rest of our lives.

Some people seem to marvel at our strength, our ability to cope. They say things like, I don't know if I could handle losing a child. Implicit in this comment is the suggestion that they think we can. It's not really like that. We have no options, were given no choices. Our one choice was to be parents, something we decided long before we were ever pregnant. To have our son die was not a choice made by us. We had planned on having him grow up, live happily and perhaps have children of his own. We had planned to hold those grandchildren in our own arms one day. We cannot bring him back, alter the outcome. Our day is one of adaption, a daily honing of survival skills to help cope with the pain. This challenge is indefinite.

And as horrible it is to endure, over and over again, we haven't stopped trying to fullfill our dream of a family. We want to try for a brother or sister for Søren. We will take the risk. And hope.

Søren receives gentle caring by his daddy.