Oliver's Story

To fully understand who we are as a family, you need to understand Oliver's story. 

On September 30, 2014 we met and said goodbye to our tiny little man. He had been diagnosed with an incredibly severe Congenital Diaphragmatic Hernia and was given almost no chance of survival. We made the most difficult choice we have ever made and chose to meet him at 22 weeks instead of hoping I would make it to full term. It was a crushing experience and one that I hope others can gain some insight from. Here is his story...

Oliver John Eliuk

On September 30 at 7:15 in the morning we met and said goodbye to our tiny little boy. We named him Oliver John Eliuk and at 22 weeks gestation and just over one pound.... he was perfect. 

Oliver's story has been a difficult one to document but one I thought was important to remember. Not only so that I have something to look back on when I miss him the most.... but so that those families who are faced with the same impossible choices we were are able to gain some insight and maybe some comfort from our experience. 

I am now a mother of three and I am proud to say that. His story begins here. 

September 15, 2014 ~

I don't even know where to start with this story. 

Going into our ultrasound on September 5th I was excited. So excited to have the tech put the baby's gender in an envelope for us to reveal at a later time. Excited to see our little nugget and how he or she was doing. I could not wait to hear that everything was great and we were almost half way. I could not wait to share the ultrasound pictures of our sweet little one with our families. 

I followed the technician into the room as Dave waited in the waiting room. I climbed on the bed and spent the next half an hour or so casually talking with the technician about our excitement over this third baby and how our kids are really happy about having another sibling.... especially Sydney. I spoke with the tech about what an interesting job she has but how it must be really difficult when you see something bad on the ultrasound and can't tell the parents. She agreed that it is hard but ensured me that they are well trained or those situations. When she had taken all of the necessary photos she called Dave into the room and showed us our tiny baby. Baby was kicking and waving like crazy and Dave and I were so exited. It was incredible to see our little nugget and I couldn't help but comment several times about how cute he or she was. It was just another moment that bonded us even further to this little being. We were happy. 

I honestly thought that everything would be fine when we left that office. Aside from a small but normal hiccup here and there, we have had two perfectly healthy kids and pregnancies. Unfortunately this one will not be easy or normal at all. 

When I went to Lethbridge to visit my family last week I received a call telling me that I need to make an appointment to see my OB right away. I knew it was bad. I could feel it. The office is only open during the week so I called while driving home on Monday morning and waited for Margie (my doctor's amazing nurse) to call back when she had a moment. Luckily that call came after I had gotten home.

"Stephanie, I have some results from your ultrasound that we are extremely worried about. It looks like your baby is missing half of it's diaphragm. We can't see it on the ultrasound. I am so sorry to have to tell you this over the phone...." 

Margie was incredible with me. I immediately started sobbing and Dave tried to take the phone from me to finish the conversation but I would not let him. I asked the question that every other mother would have asked.... Can the baby survive this?

"I don't know.... I wish I could tell you more but I promise we will get you in to see the best specialists. I just don't know if the baby could survive as it gets bigger..."

I honestly don't think I have ever been that shocked, sad and scared at the same time. Our baby has only developed half a diaphragm and we have no idea what this means. We have no idea if this is an immediate death sentence or if there is a chance of survival. We don't know what to expect or how we will get through this. We don't know how we will tell the kids...

We have two appointments with specialists in the morning. The first is with a Genetic Counselor and the second is to perform an Amniocentesis. I am terrified and hopeful when it comes to learning the test results. I can only hope for the best and lean on Dave for his support. 

This whole thing has made me feel the strangest rush of emotion. Obviously sadness and fear top the list. But there is also the feeling of guilt. I pushed Dave to have a third baby and I am the one who is being trusted to grow and protect our child. I also have this overwhelming feeling of dependency. Whenever Dave has been away from me this last week I feel anxious. He has been my rock and protector and has kept me sane and reassured. I do not think I would be where I am without him. We are going through this together and he has made that abundantly clear. 

The uncertainties are almost debilitating.

Mrs. E

Oliver ~ 20 Weeks

September 15, 2014 ~

This is such a strange post for me. 

Usually at this point in my pregnancy I am excited and looking toward the second half of my time growing the baby and keeping it safe. But this time is different. This time the halfway mark is a sad milestone for me. It marks a point of uncertainty and fear. Another milestone passed and we still have no idea what will happen to the little person growing inside of me. 

This time our baby is sick. We don't know how sick or what the outcome will be and only time and doctors appointments will be able to answer any of our questions. I am so sad. Sad that I don't know what to do or how all of this will play out. Sad that Sydney and Henry may never meet this sibling. 

I am also scared. Scared of what the next few weeks will bring and how they will dictate the path that our family will be traveling on. I am scared of our first specialist appointments tomorrow. Of the conversations we will have with the genetic counselor and the amniocentesis that I will have to endure. I am scared of what they will tell us and the questions that are sure to follow from those around us. I am terrified of the looks of pity and sadness that we are sure to get from people and I hate the idea of a million people asking me if I am ok.... I'm not. I am scared of the decisions that we will have to make for our family. I am just scared. 

This is easily the most difficult "half way through my pregnancy" update I have ever given and one of the most difficult moments of my life. I am tired, scared and sad. 

Mrs. E

Oliver ~ The Worst Diagnosis

September 17, 2014 ~ 

Yesterday was the hardest day we have had on the journey so far.

David and I spent the entire day with the specialists at the Lois Hole Womens Clinic. The objective was to see how our little baby is doing and make some decisions. We needed to know exactly what was happening. Yesterday we received our diagnosis.

As soon as the ultrasound images popped up on the TV screen I could see that something was very wrong. Our baby's stomach was beside it's heart and everything looked wrong. The diagnosis was very clear. Congenital Diaphragmatic Hernia.

The simplified explanation is that as the baby grew the diaphragm did not develop properly on the left side. The diaphragm usually acts as a barrier between the organs in the chest and those in the belly. Because the barrier is not in tact the stomach, bowel, liver and intestines can move through the opening into the chest moving the heart over to the right side of the chest and compressing the lungs not allowing them to grow. This is what has happened to our little one. On it's own this is not a terminal diagnosis. Surgery has come a long way and it can be reversed once the baby is born with a success rate of about 70 percent. However,  many CDH babies are have other issues to contend with. Each of these developmental and chromosomal issues take a away from the chance of survival. 

Only testing and time will tell the fate of our baby and all we can do is wait and ask questions. In the end there will be an impossible decisions  to be made... and I am desperately not looking forward to it.

Mrs. E

Oliver ~ The Exhausted Pin Cushion

September 18, 2014 ~

I am so tired.

I have been poked and tested all week and I can't even begin to explain how I am feeling physically. Aside from fighting a wicked cold, I have been in consult rooms, on ultrasound tables, on the phone with doctors and in bed for hours and hours this week. It has been a true test of patience and my ability to handle my emotions while gathering as much information as possible.

Today was our amniocentesis. I would be lying if I said that is only hurt a little. The pain when the needle entered my skin was one of the worst things I have ever experienced. It stung. I cramped. My eyes welled up. I could barely walk after.  The only thing that got me through today was knowing that we will learn so much more about our little baby from this test.

Over 60 percent of CDH babies are diagnosed with some type of genetic disorder as well as their physical problems. By doing the amnio we will be able to get a pretty good idea of what our baby is facing. It also helps us come up with a final prognosis.

I have been in bed all day sleeping and trying to ignore how much my belly hurts.  It is now 12:30am and David is sleeping beside me. I can't sleep tonight and it is frustrating.  I know that part of my insomnia is because I slept so much today but another part of it is that I just can't stop thinking.  I can't help but wonder what decision we will make once all of our results are in. I can't help but wonder what it would be like to hold our 22 week old baby. I can't help but wonder if this baby actually has a chance at life and what his or her quality of life might be like if they survive. I am tired of thinking and tired of tests.

Mrs. E

Oliver ~ So So Sad

September 20, 2014 ~ 

I am so extremely sad these days.

I know that if I get out and start doing normal things with the kids I will feel better..... but I just have no energy to do it. I know that what we are going through brings this type of sadness, but it is almost crushing when you experience it for the first time. It is like there is a giant sumo wrestler sitting on my chest and I can't breathe. I feel heavy and tired and so discouraged. It is the hardest thing I have ever dealt with.

After Sydney was born I experienced some pretty rough postpartum anxiety. As the night came closer I struggled to stay calm and all of my parenting fears would start rising like a giant wave threatening to take me out. I knew what it was and I was always able to talk myself through it or confide in David and have him help me. This time it's different.

There is nothing you can do with sadness but experience it. It is part of the grieving process and I know that.... but I also can't wait for it to be over. I can't wait to be back to myself.

Mrs. E

Oliver ~ A Tiny Rainbow Heart

September 25, 2014 ~ 

We spent the entire morning in the hospital again.

We met with doctors to have another ultrasound done and to discuss our test results from this last week. On Monday we had our fetal echo done.... it was then that we started to admit to ourselves that things are not looking great for our tiny baby.

The echo took forever. It was in an older part of the hospital that was quiet and isolated.  It made me feel very alone and extremely sad for some reason and all I wanted was to get out of there. When I laid on the table and the doctor began to look at the baby's heart I could see it flash up on the screen. A tiny flickering multi colored sign of life. Echo machines use multiple colors to show the flow of blood within the heart and it's vessels and arteries. It truly is a beautiful thing. For some reason seeing this tiny rainbow heart on the screen made me feel a little bit lighter. It gave me hope.

When the fetal echo specialist came in to discuss the results of the echo I knew it wasn't good. The left pulmonary artery that supplies blood flow to the left lung is half of the size it is supposed to be. This indicates that the lung is at least half the size it is supposed to be....

See, the idea behind the CDH surgery is that they move all of the belly organs back down to where they are supposed to be, re-build the diaphragm and hopefully give the lungs room to re-inflate. Unfortunately,  the success of the surgery depends on the baby having a full set of lungs to re-inflate.... Our baby does not have this.

We knew right then and there that we would more than likely be saying goodbye to our baby at some point. To say that we are devastated is the understatement of the century. Any hope that we had of our child surviving the massive amount of surgery and intervention it would have to endure went out the window and reality started to set in.

This morning we walked into the clinic knowing that they would tell us not to have our hopes up. We waited an hour and a half before being brought into an ultrasound room. The TV that is used for the parents to watch the ultrasound was broken and I was thankful for that. I can't see it anymore.  I can't take seeing how hurt our baby is. I closed my eyes while they looked at the screen carefully.  David sat quietly. When the doctor came in he gave us no further answers and insisted we wait to discuss his findings until after we met with the post surgical baby doctor.

We were led to the same room we waited in for hours that first day in the clinic. It's a sad, windowless consult room that makes me anxious.  The post surgical doctor came in and awkwardly asked us what questions we had. The first thing I thought was "Aren't you supposed to be giving us information and running us through what to expect? Why do I have to lead this conversation?" She let us know that the prognosis for CDH kids is never really positive and that we had a particularily difficult case. I managed to keep my tears from overcoming me until she started to discuss at what point they would stop with medical intervention and do their best to make our baby comfortable until he or she passes away. That's when everything hit me. This is actually happening.

She left and our doctor came in to discuss further options. He ran us through several scenarios including what will happen if we choose to end this pregnancy early. This is where I started to really lose my composure. We finished our conversation and I told David to take me home. I was tired... I am tired.

Tomorrow is our last meeting. After that we must make a decision. This is the most difficult decision we have ever made.

Mrs. E

Oliver ~ Final Moments

Oliver ~ Meeting Our Little Man

September 28, 2014 ~ 

I'm 22 weeks tomorrow.

I will also meet my sweet baby tomorrow. Tomorrow is my induction day and I am feeling a rush of mixed emotions. I am sad, I am scared, I feel incredibly uncertain and I am also in a state of disbelief. I can't believe that after 22 weeks we will be meeting and saying goodbye to our very sick little baby.

I know that even though I think I know how it will feel to hold our child, I know that I have no idea. I am aware that I am going to feel a new emotion tomorrow.  Just as I felt a new emotion the first time I held Sydney and Henry. We call it love for lack of a better word but it is something much deeper and complex. I know that the emotion will define this experience for me and I have to say that I am not looking forward to it. 

Please send us strength and supportive thoughts during this time. We will need everything we can get.

Mrs. E

October 4, 2014 ~

It has taken me a few days to sit down to actually write this.

We walked into the hospital at 7am on Monday knowing that this would be the most difficult day of our lives. We checked in at admitting and made our way up to the gynecological ward when we were shown into our private room. After changing into my hospital gown I climbed into my bed to prepare for the worst.

The first major hurdle came when we got the news that our doctor would actually not be in to start the induction until noon. That meant that we would have to wait hours before we even started doing anything. I have never seen David so mad and protective. His first reaction to the delay was to try to get things moving.  The last thing he wanted was to have me waiting longer than I needed to.  We played scrabble and chatted to pass the time. After an early lunch, it was time to get everything started.

As I signed the paperwork and laid on the table to be given induction medication and a Foley balloon it hit me that there was no turning back. The countdown to Oliver's birth had begun and I couldn't stop the sobs. I cried as David guided me back to our room and cried as he helped me into bed. I slept most of the afternoon. I was exhausted from the emotional roller coaster of the morning and the stress of the entire situation.

I started having small contractions at around 4pm but things didn't really get started until after 7pm. David ran out and picked me up some sushi and we had and light dinner. I can't even begin to explain the nerves and fears that were running through me at this point. I found myself randomly crying throughout the evening.  I knew what was coming and and I kept telling David that I didn't want to do it. I was so afraid.

Hours of small contractions flew by. I slept and we played a few more games of scrabble to keep our minds off of the inevitable. At sometime around one in the morning everything changed.

I was in an excruciating amount of pain but did not want to take the morphine. They cannot give you an epidural on the gynecological unit. In order to have one administered I would have had to be moved up to the labor and delivery ward. They do not like to do this because they figure that the emotional pain of being surrounded by women delivering healthy full term babies would be to much. That being said.... If you really want one they will do that for you. My fear with the morphine was that it would make me nauseous. David really wanted me to take the pain mess.  I think it was hard for him to see me I  so much pain. After they gave me gravol I finally succumbed and took my first dose. It didn't work immediately and this is when I started to panic. The pain was unbelievable and I started begging for an epidural. David convinced me to wait until I could have one more dose. As soon as that dose entered my system I was out. The combination of the morphine and the gravol knocked me right out. Two and a half hours flew by. I would sleep for two minutes and wake up to breathe through a minute long contraction.

At around five thirty the pain changed once more and got worse. I had to try to control the pain for another two hours. At seven all I could feel was pressure. I pressed the call button and an aid poked her head in to ask if I was ok. I yelled at her to grab a nurse and she ran to grab one. It was shift change so they were all doing hand off at the time. They barely had enough time to run in the room and get me onto my back before Oliver was born. We had chosen to wait to see him until he was bathed and wrapped up so he was taken out of the room immediately. 

I can't even begin to try to explain how I felt in those moments after his birth. My heart was absolutely breaking and I sobbed uncontrollably. It was the most physically and emotionally painful thing I have ever endured.... and I immediately missed my baby. All I felt was an entirely new level of grief and sadness.

After being cleaned up and given some time alone with David, they brought our little boy in so I could hold him. David  was not comfortable seeing him so I was careful to respect that. When the nurse handed him to me I could not hold back the tears. He was a perfect tiny little man and he looked exactly like his siblings. They had put him in a very tiny cloth diaper and handmade knit hat and he was wrapped in a beautiful blanket made by volunteers. They had given him a tiny white basket to sleep in and I was immediately in love.

David gave me a few moments alone with my little man. I took the time to cry and apologize to him. I told him how loved he was and how we wanted so badly for him to be a little bit healthier. I told him I would never forget him and he would always be a part of our family. I tried to memorize his tiny face and took the time to look at his tiny toes and little fingers. I gave him as much of me and my love that I possibly could, so he knew that if I could do anything to change the outcome I would.  If I could do anything to keep him with me I would.  If I could have given him a healthy body I would.

It is difficult to explain, but it was hard not to have a tiny bit of happiness on that day. In the end I had given birth to a perfectly beautiful baby. I had fallen in love with someone new. I had gotten to hold him.

The rest of our time in the hospital was an absolute blur. I struggled with some pretty major bleeding that required three separate treatments (essentially fully awake D&C's) and it kept me in the hospital an extra night. At one point I sat up only to completely fill my bed with blood. I honestly thought I was going to die at one point. It was terrifying and I am so glad that that piece is over.

In the end I dragged my feet leaving the hospital. I knew that leaving meant that Oliver would be taken down to the morgue and that he would be alone. I was scared for him and devastated to be leaving him. In the end I left the hospital with a bear and a box of mementos.  I cried uncontrollably as we walked to the car and I went home and slept.

I met and said goodbye to Oliver in the same day.

Mrs. E

Back to Work Anxiety

November 19, 2014 ~

Well, I am back at work. 

Six weeks after Oliver's birth I am sitting at my desk trying to pretend that all of this feels completely normal. I will be honest, the routine is kind of nice but I am missing the kids and the safety of my home. I feel like I have been tossed out into the world now and it is not up to me how people will treat me, react to me or what they will say to me. I have to prepare for the worst and hope for the best. 

This is the part that I was so afraid of. I was afraid of trying to find normal after something so abnormal. I was terrified of being judged or receiving nothing but overly sympathetic looks. I was nervous about awkward interactions with people... about people asking me if we had our baby. It has all happened already and I haven't cried yet. I think I will get through this but or now I will try to push down some of my anxiety and enjoy my time with some of the best co-workers that a girl could ask for. 

Mrs. E

I Would Have Been 30 Weeks...

November 25, 2014 ~ 

I feel like such a dummy....

When I sat down at my work computer this morning and opened my email and calendar, I was jolted by a sad reminder of my sweet Oliver. When I found out I was pregnant I was so excited that I set weekly reminders of how far along I was in my calendar. This morning the reminder said 30 weeks.... I would have been 30 weeks along with this tiny man. 

These are the last photos I have of Oliver alive. They were taken at our 19 week ultrasound.... before I knew anything was wrong and before our lives were forever changed. I am sad that she wasn't able to get a good profile picture for me. He was super active that day and would not sit still to have his picture taken. I will be completely honest and tell you that this is actually the first time I have ever looked at these photos. I have been carrying the CD around with me in my purse since they were taken. I just couldn't bring myself to look at them. They remind me of my excitement and my naivety.... I would have been 30 weeks. 

Mrs. E

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