Faces of Loss, Faces of Hope

Andrea

Mom to Lucas Peter

Born December 1st, 2009, Passed December 25th, 2009

Keswick, Ontario

I found out that I was pregnant on April 15^th 2009. My husband and I were completely shocked and delighted because we had only just started trying the month earlier. 

 

I was the happiest I had ever felt in my life. Watching my belly grow and having an instantaneous bond with the little life growing inside me was everything to me. I loved talking to other mothers about motherhood and their pregnancies to compare myself with them. 

Everything was going great with me and the baby, and my husband and I were counting down the days until our ultrasound that was going to be on August 14^th 2009. I was going to be 20 weeks at that point and we were going to finally find out the sex of the baby. 

We went to our ultrasound on August 14^th, and asked the ultrasound tech to write the sex of the baby down on a piece of paper so my husband and I could read it together by ourselves.  

After the appointment, we went over to our favourite restaurant, the Keg and read the little sheet of paper the tech had written on, and it said “It appears you are having a BOY”. My husband and I were overjoyed to learn we were having a boy and couldn’t contain ourselves sitting in the restaurant. We toasted (me with sparkling water) to having a perfectly healthy baby boy. 

A week later we went for a routine doctor’s appointment with my family doctor. He went over the usual measurements, weight check, blood pressure check etc. Then he looked down at some sheets of paper and said, “Oh, I have the results from the ultrasound you did last week”. As he read the results, he mentioned to us that it looked like the ultrasound tech could not get a clear picture of the baby’s heart. He explained to us that this can be normal as the baby could have had a limb in front of the chest when the ultrasound was being done. With this re-assurance from the doctor, my husband and I did not worry that much, because how could anything go wrong with our little baby?  

My family doctor sent us to a fetal cardiac specialist to get a clear ultrasound of the heart. I remember sitting in the waiting room waiting to meet with the specialist, not worrying about anything. 

My husband and I went in and talked with the doctor for a few minutes and then started with the cardiac ultrasound. Right away my husband and I could tell that something was wrong, very wrong. The doctor was talking to himself, saying what he was seeing about my baby’s heart. 

I began to cry because I really didn’t know what was happening. The doctor ended the ultrasound and pulled us back into his office. He explained to us that our baby had a very sick heart. He told us that Lucas had a congenital heart defect called Ebstiens Anomaly with pulmonary atriesia. At that point my world came to a shattering halt. I didn’t really hear what else he was saying. Thank goodness my husband was there and he absorbed all the details of what Ebstiens Anomaly and pulmonary atriesia was. The specialist told us that we had to make a decision on whether or not we should continue with the pregnancy.  

My husband and I were numb walking out of the specialist appointment. We called both of our families who immediately dropped everything to rush over to be with us.

The cardiac specialist had set us up with an emergency appointment at Sick Kids Hospital. We had one week between our specialist appointment and our Sick Kids appointment, and that week was one of the hardest weeks of our lives.

To my husband and I, there was no decision on whether we were keeping the baby or not. This was our baby that I could feel moving inside me, fighting to live. How could I give up on him? 

August 21^st was the big day. The Sick Kids appointment, the last place any expecting parent wants to be. My husband and I felt completely sick to our stomachs with nerves, not to mention I still had morning sickness which was a bad combination.  

We signed in and went into our fetal echocardiogram ultrasound. There were doctors from all over the world in on our appointment, which made us feel very intimidated. The ultrasound lasted 5 hours, with different doctors coming into to give their opinion on the diagnosis. 

After the ultrasound was over we went into a little room and waited for the cardiologist to come in and talk to us about our options. 

Two cardiologists came in and began to explain that Lucas did in fact have Ebstiens Anomaly and pulmonary atriesia. My husband and I began to cry, because it was finally confirmed by the best children’s hospital in the world that our little baby was sick.  

The cardiologist explained to us that there was a set of 3 surgeries that would have to be done with Lucas. One would have to be done right after birth, the second at around 6-8 months old and the third and final surgery would be done at around 3-4 years old. The cardiologist told us that the success rate for survival after the surgeries was 93-95%. My husband and I finally had someone telling us that they could help our baby, and that after 3 surgeries he was going to live a normal life.  

I was instructed that I had to deliver Lucas at Mt. Sinai hospital in Toronto as they were a high risk hospital and they were next door to Sick Kids hospital.

We walked out of the hospital that day totally hopeful and positive about the outcome at the hospital.

The next four months would consist of many Sick Kids appointments, high risk pregnancy ob appointments and regular ob appointments. I ended work early because I was not able to focus on work and everything that was happening with the baby.

On November 30^{th at} 6am, 3 ½ weeks before my scheduled due date, I felt a lot of contractions and a lot of back pain. My husband I bundled up and headed down to Mt. Sinai to get checked out. I was told that my water had perforated at the top of my uterus and was slowly leaking. They immediately got me into a room and started me on Pitocin to get my contractions stronger. I got an epidural that completely eased my pain, and let me enjoy my labour.  

At approximately 3:45 am on December 1^st, the doctors checked me and told me that I was 10 centimetres. The nurse told me to do some practice pushes to see what would happen. As soon as I started pushing, Lucas’s head started coming out. The nurse quickly got the doctors into my room and they instructed me to keep pushing. I pushed for 17 minutes and at 4:06 am Lucas was born. He was immediately whisked away to get checked out and to get some iv’s that would give him continuous medicine that would keep a hole in his heart open which was needed for the first surgery.

About 15 minutes after Lucas was born I was finally able to go and see him. I got wheeled in by my husband and saw Lucas lying there crying with tubes and oxygen masks everywhere. He looked so beautiful, just like his daddy. We stayed with Lucas as long as we could and then he was taken away to Sick Kids.

My husband went with Lucas to Sick Kids, and I was instructed to go to my room and rest. After seeing Lucas crying and acting like a normal baby, I was able to let my husband go with him and I went to get a few hours of sleep.

At approx 9 am, I woke up and wanted to go see Lucas. My husband wheeled me over to see him. Lucas was in an incubator as he was a preemie. He was sleeping soundly and reacted to our voices when we walked into the room. I was finally able to hold Lucas. I have held other baby’s, but nothing compares to holding your own baby. It was the best feeling in the world.

My husband and I were able to get a room at the Ronald McDonald house in Toronto, which was such a blessing to be around families that were experiencing the same thing that we were going through. 

Lucas would stay in the Sick Kids hospital room until December 9^th, which was when his first surgery was scheduled.  

The surgery took 4 hours to complete, and afterwards the surgeon came out and told us that Lucas did great. We went into the ICU to see Lucas after the Surgery and he was very sleepy from the medicine and the surgery.

The next few weeks were very volatile with Lucas’s recovery. We were at the hospital 20 hours a day and only went back to the Ronald McDonald house to sleep and shower.

On December 20th, Lucas was moved out the ICU and moved into a private recovery room. After talking with other parents and hospital staff, this was a good place to be because it meant that we were going to be released soon.

On December 23^rd we were told that Lucas was released from the hospital. We were so happy that we were going to have our baby boy home for Christmas day.

We brought Lucas home and we felt like normal parents, there were no tubes, beeping from monitors, nothing. We had no idea what we were doing, but told ourselves that no first time parent knows what they are doing.  

We were on a VERY tight schedule with Lucas’s medicines and needles he needed. It was very hectic trying to get into a routine with everything. 

On Christmas Day, we woke up and had a wonderful, yet tired Christmas Morning. We opened all of Lucas’s presents and showed him all his fun books, toys and clothes. We had a really relaxing afternoon, and had just started to make Christmas dinner.  

I was feeding Lucas and he really would not eat anything, he was just sleeping. I passed him to my husband to see if he could get him to eat, and suddenly Lucas went blue in my husband’s arms. I immediately called 911 and they were at our house within 5 minutes. I was completely hysterical trying to talk with the 911 operator. The paramedic took Lucas from us and began working on him. 

The ambulance quickly left our driveway and my husband and I frantically followed behind. When we got to the hospital, we saw 12-15 doctors surrounding Lucas trying to help him. We were quickly brought to the room next door to ask us questions about his heart condition. We were answering the best we could under the circumstances.  

After we finished explaining everything to the nurses, the doctor came in and told us that Lucas had passed away. I can remember screaming at the top of my lungs and falling to the floor. My husband and I wept there for hours. We went into see our precious little boy, laying there so peacefully, like he was sleeping. We stayed with him until they had to take him away, and then met our family in the family waiting room. I was in complete shock, and could not actually believe what had happened to us.

We got taken home and went to bed.  I don’t know how I managed to sleep that night, but I did. I woke up and it was so real and fresh. I felt as though I had a knife in my heart. It was hard to breath, let alone do anything else. I couldn’t get out of bed for days, and finally got out of bed to go to my little babies funeral.  

The funeral was beautifully done; it was a great tribute to my little angel that touched our hearts for 25 days. 

I will forever cherish Lucas in my heart everyday. He is my little angel that is watching from above and guiding us in the way of happiness again.   

You can contact Andrea at aderrick@rogers.com