Mom to Isabella Rose

January 13, 2011 to February 22, 2011

Red Deer, Alberta, Canada

In May of 2010 we found out we were pregnant. We were very excited but also a little scared. We had had 2 miscarriages prior – in November 2002 at 11 weeks and December 2008 at 13 weeks. At the time, we had 2 beautiful and healthy kids, Jake who was 6 and Katelyn who was 4, and we couldn’t wait to share this experience with them.

We wanted to wait to tell many of our family and friends until we had our first trimester screening. I was a little nervous for our screening in July, but was relieved when the doctors said there was a heartbeat and that the baby was developing fine. So, at the end of August, we went to Calgary for a detailed ultrasound. The doctors said the baby looked good, but they couldn’t get a great picture of the heart. After what felt like hours, the baby moved just enough to get a good picture. The room got very quiet and more and more doctors started coming in. Finally, they turned on the lights and told us they were sure that there was a hole in the heart. I felt like I was hit by a truck – I was not at all prepared for this news. They wanted us to come back the following week to have an echocardiogram done on the baby. After shedding many tears, we knew that there was nothing we could do in the doctor’s office so we came home. The drive took about 2 hours and it was completely quiet. So many thoughts run through your head – why is this happening to this perfect baby, how do I tell my kids, family, and friends, can I handle this?

The following week felt like it took a month to come. But the appointment did come and we went in for the echo and to meet with a cardiologist. She told us that there was a hole in the heart and that the condition was called Atrioventricular Septal Defect (AVSD). I choked on the words as I asked, “Am I carrying this baby to bury, then?” You never think that you would have to ask a doctor such a thing and I felt so guilty for even thinking such a thing. She reassured us that this was a very operable condition and that the baby would have a very close to normal life after the surgery was done. She explained to us that the baby could be carried to full term and delivered naturally and we would have to spend about 7-10 days in the hospital to find the right combination of meds. The baby could then come home, but we would have to watch for heart failure at about 4-6 weeks (but it would be controlled by the meds), and then the baby would have surgery at about 4-6 months old. Even with all this news, we felt comforted that the success rate was high and that the doctor’s predicted that after surgery, our baby was going to be fine.

So, then it came time to tell our family and friends. They were all supportive, but I don’t really think they understood what was happening. I heard all the stories about how they knew someone who had a hole in their heart and they were just fine. I knew that they were trying to comfort us the best they could and I did appreciate it. For the remainder of my pregnancy, I went to Calgary every two weeks to alternate between regular ultrasounds and echos for the baby. Nothing seemed to change too much – which was good news. At 37 weeks, they told me that I would be induced at 39 weeks – Jan. 12, 2011. We were having the baby in Calgary, just because it is a bigger center with more knowledge of these situations.

So on Jan. 12, we drove to Calgary to have our baby – the final piece of our family. I was induced that evening and at 2:39am on January 13th, we got to meet our baby that we had seen so many times in pictures. It was a girl!! She came into this world as a feisty little thing!! Isabella Rose was 5 lbs 13 oz (smaller than our other babies) but was very strong. She looked so much like her older sister and was one of the most precious things I have seen in my life. She ate right away and was doing amazingly well. The cardiologists came to see her at 7:00 that night, did an echo, and told us that her heart appeared better than they thought it was prenatally. We could actually maybe go home in 5 days or so. It was the best news we good hear. It felt like it was the first time that I could breathe after finding out about her heart prenatally.

Izzie’s journey from this point on was filled with many turns that we were not prepared for.

On day 2, Izzie was moved from the NICU side to the special care nursery. Everything was going as expected – and then very quickly, our world was turned upside down. Izzie grew too tired to eat and we were moved back to the NICU side. In that one day, we seen our beautiful baby girl get poked, a feeding tube put in and finally put on a ventilator. I cannot put into words what it was like to see her like this. It felt so unfair and all I knew was that if I could do this for her, I would in a heartbeat. No one seemed to know what was happening. But she was fighting! And she was strong! And on day 5 our baby girl was back to her feisty self and off all the machines – I could not have been more proud of her!! At this time, she was on her heart meds and she would have to stay on them until her surgery. Because Izzie fought herself back, we transferred to the Children’s Hospital. We could breathe again. But just as quickly as before, after being at the Children’s hospital for a day, she took another turn. She was back on the machines, and this time her little heart had been damaged. We had no idea where our next turn was going to take us. Again, our strong girl fought back against this and stabilized. After almost a week at the Children’s Hospital, on Jan. 26 she was transferred to the Stollery Hospital in Edmonton. There they are specialized in hearts and had the top pediatric cardiologists and surgeons.

At the Stollery, they stabilized Isabella more and continued to monitor her heart regularly with echoes. No one knew why Izzie’s heart reacted the way it had, so the surgeons were not sure which operation they should do. But they told us, that something could be done, and that she was one of the strongest babies they’d seen. She had so much fight in her and bounced back from everything. She was eating again (through IV) and then I saw the most amazing thing – she was sucking on her soother. At times such as this, what may seem like a small thing is actually a huge victory. We celebrated all these victories!! I was with her on Feb. 21 at about midnight when one the doctors came to me and said it was time to make a decision on surgery. If we were not going to do surgery right away, Izzie could maybe be transferred to another place until the point she was big enough to do surgery. Everything was looking up. So I wasn’t surprised when my husband (who was at home this time with our other kids while I stayed at the Ronald McDonald House) phoned me on the morning of the 22nd at 7:00 and told me he had called and checked in at the hospital and they suggested he come to Edmonton. I told him about the conversation that I had the night before and that I thought they wanted him there to discuss and make a decision regarding a surgery. After ending my call with him, I headed straight to the hospital.

I remember driving to the hospital and thinking that today our lives were going to change. We were going to finally make a decision and have some direction as to what was going to happen next. I was happy!! The minute I walked into the NICU and saw my beautiful baby girl, I knew my life was changing, but not in the way I had hoped. There were more machines now than when I left the night before at 2:00, there were more nurses and the doctors were there. I remember slowing down and thinking that if I just walk a little slower, she’ll be better before I get there. It’s funny, you would think that you would run in a situation like that – but not me, I walked. When I got to her bed and saw her, I completely broke down because my baby girl looked up at me and told me it was time to let her go. She was just too tired. Once my husband arrived, the doctors explained to us that she got sick that morning at 5:00am and they could not figure out what had caused such a change. Isabella hung on until her Daddy, brother and sister got there. Surrounded by the ones who loved her the most, and in my arms, Isabella peacefully took her last breath.

In Izzie’s 6 weeks with us, we built memories that will last lifetime. I remember the hours that I would hold her when I was able to. I remember listening to her Daddy telling her stories about what life will be like for her when she gets home – he promised that she would never be in trouble. I remember the way she would wake up whenever she heard her big brother’s voice. I remember the expression on her big sister’s face when one night we went to the hospital at 11:00pm so Katelyn could help the nurse sponge bathe Izzie. I remember when the NICU was quiet at night, and I would read to her and she would just watch me. I remember when she wasn’t happy – she would let us all know by trying to rip out her lines. I remember how she hated my long hair and would pull on it as it brushed her face when I leaned over to give her a kiss. I remember the way she smelled – the best smell in the world. I remember how beautiful she looked when she was wrapped in her yellow blanket – today when I think of her, I see yellow. But most of all, I remember sitting beside her bed and thinking how she completed our family.

It’s been a year since Izzie left us – and this is what I have learned. On Feb. 22, my baby girl passed away and at that same moment a piece of me died, too. My other kids’ innocence died as well. But I choose to believe that in all of this, something else has been born, even if it is only that we as a family have more compassion for others. There is no doubt that Izzie, in her 6 short weeks with us changed me, her dad, brother, sister and other family members. For me, she has made me a better mom for Jake & Katie. But I know she has also changed people who never knew her. We are all better off for having her in our lives. I also know that if I had 1 more baby or even 10 more babies, my family would never be complete, because Izzie is not here. But I would not give up those 6 weeks for anything – I thank God that He gave her to me, even if it was for way to short of time.

There is not a day that goes by that I do not think of my baby girl and I hope that day never comes. I’m so lucky that Izzie chose me to be her mommy and I am so proud to call her mine. My arms still physically ache at night – because I long to hold her one more time. But I know that one day I will see her again in Heaven and on that day I will hold her. But until that day comes, I hope she knows how much I miss her and just how much I love her. Since Feb. 22, I have been holding my breath, but I am learning to breathe again…

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  1. Jennifer says:

    I love you, through reading your words. My son also died in the stollery childrens’ hospital. my arms also ache every night as I long to hold him. I am also learning how to breathe again. It has been nine years, and though the pain gets softer, it still takes hold some days. you are not alone. and you are loved.

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