Friday, 10 February 2012

The Meeting Marathon Update

I can't promise this will be a quick update, I'm not even sure I'll be able to remember everything but I will do my best to fill you all in on the last 72 hours of our life.

We drove up to Edmonton on Wednesday night, it was an odd feeling as I realized that the next time I made this drive, I would be moving up there and staying until Hope was transferred to the Calgary Children's Hospital.  We had an easy drive up, only one bathroom break for the pregnant passenger and Sadie was in Calgary with our friends, so we didn't have to worry about her getting bored.

On Thursday morning, we arrived at the hospital where I will deliver and were instantly greeted by a huge display that read, 'MY HOPE IS...'.  We thought that was cute and knew that our Hope would arrive in that very building in just a short time.  We had our echocardiogram done first, it is always a long test and as I get bigger, I also get more uncomfortable.  After the first 40 minutes I began to feel terrible pain in my hips and pelvis area and had to ask the doctor to let me move around a little.  They were having trouble seeing some of Hope's heart and wanted me to stay still as they were finally getting a good picture.  I just kept praying, "Lord, please help them to find what they're looking for so I don't start crying."  She finally finished and said she would go and get the cardiology specialist to take a look at everything and then he would come and see us.  When I stood up from the table, I nearly fell over in pain.  My entire pelvis was locked and throbbing, Shawn had to help me get moving again so the feeling would come back.  We spent the next half hour waiting, eating animal crackers and talking about how boring these appointments always were...we're like little kids!

The specialist arrived with the news that he wanted to take another look, so I climbed back on the dreaded table and it started again.  He was saying things to the other doctor, but mumbled horribly and Shawn and I were trying to make out what they were discussing.  They decided that they could see some valve they thought was missing and seemed happy with that.  We were then told that Hope's aorta is less than 3mm and will likely not grow any further.  This can cause complications in surgery as it is difficult for the surgeon to work with such a small aorta.  We are asking that you pray, our God is better than science and can make her aorta grow, at least until it is more than 3mm and she is no longer in the dangerous zone for surgery.  Other than this complication, her heart is looking great; no leaking valves, no signs of heart failure and the blood is flowing as best it can without the left side.

We finished the echo about 15 minutes after our ultrasound was supposed to begin, we had to quickly (I'm not too quick right now) walk over to another building and begin the ultrasound.  Thankfully, because we were late, we had to wait for 40 minutes and it gave my body a chance to move and recover from the last test.  We ate lunch in the waiting room and read books as we waited to be called in.

The ultrasound was much shorter in length.  They believe that Hope is now 3 pounds, 7 ounces and is in the 25% for weight.  We need her to be a good weight for surgery, they told us that even 1 ounce can make a big difference.  I guess I can eat as many cupcakes as I want now!  Don't invite me over for salads, but if you make something with some can count on me to eat it!  They also confirmed that Hope is VERY low in the womb.  This was no surprise to me, I feel like she is about to fall out many times and wondered if she was low.  It looks like the cervix is still holding strong and should not be a concern for premature labour, but they will continue to check this at the ultrasounds every two weeks.  Hope needs be at least 4.5 pounds at birth or we would have even more complications to deal with.

After the ultrasound I was thrilled to get off the bed and could hardly move.  We had to wait for the Perinatologist to come in, so I made shawn lay on the bed and give me his chair.  He was thrilled and the doctor got a good laugh when he arrived and shawn pulled up his shirt to start the ultrasound.  The doctor took us into a meeting room and began discussing Hope's case a little further.  He let us know that they will NOT be inducing me, but will let me go naturally unless I get too far past my due date.  I really did not want to be induced and was happy to hear I wouldn't have to be.  Please pray that I go into labour naturally and do not need to receive any induction drugs.  I did not tolerate them well with Sadie and really hope to avoid them.  He realized during the meeting that they had failed to assign an obstetrician to us.  They have since done that, but we were not able to meet the OB and will have to wait until we return next month.  We were at the hospital for 5 hours by the time we got to leave and were both a little zoned out.

We then drove over to the Ronald McDonald house, we wanted to see where it was and what it was like.  We were taken through the house on a tour and told all about the house.  It was beautiful and looks like a kids dream, we're not sure that Sadie will ever want to come home!  I was not prepared for the other guests, we rode in the elevator with a little girl that had just finished chemo and my heart broke for her.  I'm sure there will be many families that capture our hearts while we're there.  We were thrilled to learn that our friends can visit and we can have other people watch Sadie in the house as well.  I think it will be the perfect place for our stay, although it felt weird to picture ourselves living there for at least 2 months.

We finished off the day by wandering around and doing some window shopping before we met some friends for dinner.  It was a good way to take our minds off the day and avoid thinking about the next day and the rest of our meetings.  We hadn't seen our friends since July and enjoyed catching up with them.

We spent Friday morning with Shawn's aunt, she prepared a wonderful breakfast and spoiled us rotten. They were incredible hosts and so hospitable.  We went with her to the 'Enjoy Centre' and shopped around the green house, it's a wonderful place in the winter because of all the sun that shines through.  I'll have to bring Sadie back when we move next month so she can see it as well.  We went back to the house for lunch and then said our goodbyes and drove to the Children's Hospital.

As I stood in the hospital waiting for Shawn, he was parking the car, I was overwhelmed with the reality of where I was.  Knowing that our daughter would go through so many challenges in that very building and experience such pain was almost too much to bare.  As Shawn and I rode the elevators I began to cry and wished our situation was different.  The social worker met us and took us over to the conference room, we could see my mom and sister on the screen when we walked into the room, that was a pleasant and comforting sight.  Our cardiologist in Calgary was video conferenced in as well as the Perinatologist we'd seen the day before.  In the room with us were the Neonatologist, Cardiologist, Social Worker and a nurse of some kind.  The surgeons do not attend the meetings, we won't meet our surgeon until Hope's surgery.

The meeting was a lot of information but a great time to have our questions answered.  We were blown away by the responses.  We were given so many surprising answers that were much more positive than we had been previously told.  We are so glad we chose the Edmonton hospital, as they seem to have much better policies than the others we have read about.  We were told that unless I have a c-section, I am able to leave the hospital as soon as I feel comfortable and can come to see Hope.  I will have to return to sleep but am able to leave without being discharged.  They are also going to try to give me 30 minutes with Hope before they take her and transfer her.  This is much better than we had heard and were thrilled to have that much time.  It was confirmed that our family will be able to come in and see Hope in the NICU, they'll even let Sadie come in for a photo with her sister!

We spoke a lot about Hope's surgery, it will likely happen in the first 5-10 days of her life.  We had been previously told that it would be the first 3-7 days.  The surgery will likely take around 5 hours to complete, it will be a long wait for us I'm sure.  It sounds like they will try to transfer Hope back to calgary within a month of her surgery if we don't have any complications.  We had previously been told that it would be more like 6 weeks.  This was also great news, we'll want to get back to our house and our support network too.

After the meeting, the social worker took Shawn and I over to the NICU for a tour.  Standing in the NICU I started to cry again.  I don't want my little girl to have to live there and I felt such pain for the other families that were there already.  It looks very well run and was good to get a mental picture, but was also a true dose of reality.  The social worker was wonderful and did a great job of explaining everything and making us feel more comfortable.

We began the journey home in the late afternoon/early evening and were able to pick up Sadie before she went to bed.  She looked like she was having a great time and seemed a little disappointed when we put her in the car.  She went to bed without a fuss when we got home and seemed to be happy in her crib again.  I cried on our first night away from her, I realize that we will say goodbye to her often while in Edmonton.  It was a relief to see she was so resilient and just as happy as she is when we're around.  We're blessed to have such an easy going child and we can only pray that she stays that way.

Thank you for praying for us over the last few days, we definitely did better than we had expected and feeling more prepared for our big move in 6 weeks.  Shawn plans to spend this weekend insulating the attic to make the house warmer for Hope.  I'll spend the weekend getting ready for this week with Sadie; trips to the grocery store, cooking and making plans with friends.  It's good to be home, we'll try to enjoy every moment for the next 6 weeks.


  1. Amy you are such an amazing young woman. To hear your heart in written words reveals a life with great faith and courage. Following your story has been a gift and helps me pray in ways that I might not have known. The news about Hope is so encouraging and in six weeks our God is able to do great things. Keeping you in thought and prayers.

  2. Dear Amy,
    I read your blog for the first time today. I have been meaning to do it for so long, and somehow never got around to it before. I see you and Shawn almost every Sunday at church and I have prayed for you many times over the last several months, but I never truly allowed myself to enter into the pain of your journey until today. I read your first and last entry and several in between and then I got down on my face before the Lord and wept and prayed for you and your family. And I can only say thank you for sharing so openly of yourself and I am sorry that I have not likewise had the courage to share myself with you. I will continue to pray over the next six weeks and beyond, and more earnestly now that I have allowed myself to be touched by your story. Praying especially that she makes it to a comfortable 5 pounds so that surgery is not an issue.

  3. Hey Amy, I'm Bridget - Ryan and Christen's good friends. I just want you to know that my heart is totally with you, Shawn and Hope. Your story moves me so deeply. You have my prayers.

    1. Thank you guys, we so appreciate the prayers and are happy to have you with us in South Africa!

  4. Thanks for sharing Amy. I am kind of at a loss for words.... being a fellow expectant mother, I can only imagine how you must be feeling. I am SO ENCOURAGED by how much you guys are trusting the Lord for miraculous healing! ~Jacki Crandall