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 fat...you 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.

Tuesday, 7 February 2012

Edmonton Bound

Tomorrow evening we depart for Edmonton and begin the planning for Hope's arrival at the hospital.  Sadie is going to stay with our friends in Calgary and will spend 2.5 nights away from us for the first time ever.  Hopefully she'll do well and won't cause them too much grief.

We're feeling very anxious about our trip and also realizing how little time is left before our move to Edmonton.  While there, we'll be taking a tour of the Ronald McDonald House, having an ultrasound and echo done at the hospital where I'll deliver, as well as meeting with all the doctors that will be involved in Hope's care at the Children's Hospital.  We've been told to expect an information overload and a huge dose of reality.  We'll be taken on a tour of the NICU and meet a lot of people that will be a part of our everyday life with Hope in Edmonton.

We're looking forward to having our questions answered, but also fearful to learn some of the answers to our tougher questions.  We're glad we'll be returning to Calgary on the Friday night and have the weekend together to process all we've seen and heard before Shawn returns to work on Monday.  We are so grateful for the company he works for.  They have been amazing through this entire process and completely understanding of our situation.  They have agreed to work with us through this journey and are truly a wonderful company.

Reality of our life in Calgary has also set in, we now realize how many projects we still need to finish around the house before Hope's arrival and that we only have 2 free weekends left to do them!  We are blessed with amazing friends that have agreed to help us out and we're hoping to have everything completed in time.  If only a painting company in Calgary would call randomly and say, "we want to paint all your window frames, door frames, doors and two bedrooms for you for free!"  I can dream right??  It would save our friends from a lot of sweat and hard work around here.

I'm trying to get organized and be sure I have everything in order before March arrives; paying bills, filing our taxes, packing things we'll need there and preparing things we'll need upon our return.  It's a good thing I like to plan, this is sure taking a lot of planning to put together and I'm sure I'll miss some of the things anyway.

We'll update you on the weekend about our time in Edmonton and the information we receive.  Until then, thank you for lifting us up in prayer as this is a tough week and we really need it!

Friday, 3 February 2012

30 weeks...10 weeks until 40!

Today officially marks 30 weeks pregnant for us.  I can't believe how quickly time has gone and how close we are to the end.  Next week we'll find out if they are going to induce me or not, this will give us a better idea of how many weeks we have until the end.  I'm feeling pretty nervous about the trip to Edmonton and trying not to dwell on it.

This weekend, Shawn has gone to Fernie with a friend to snowboard, and I have a friend from Ontario here for a visit.  It's a great distraction for us and keeps us busy so we don't have time to worry about the upcoming trip.  We're taking Sadie over to the zoo tomorrow, I want to spend as much time with her as I can, I'm already dreading the time we'll spend apart when Hope arrives.  Please pray for us as we await our trip to Edmonton next week.




Monday, 30 January 2012

Little Leaps of Faith

I spent the weekend getting ready for Hope.  I started by washing all of our newborn and 0-3 month clothes from Sadie, as well as the ones I've been able to pick up for Hope.  As I began folding them, I realized that a lot of Sadie's things are not going to work for Hope.  All of the newborn sleepers, over the head shirts and pants had to be put directly back into the storage bin.  This was tough for me, you picture your next child being able to use all these nice things and never consider that they'll spend their entire newborn stage in the NICU.  I was able to put some of the 0-3 month clothes that won't work at the hospital, but will work at home, into the drawers in the nursery.  This was a total leap of faith for me and was a little harder than I had imagined.  I know that it's important to move forward and prepare for Hope with all the faith and hope that God can give us.  I also realize that there is a chance I'll be packing all those clothes away if Hope doesn't make it home.

When I finished I felt like I needed to push myself further, so I washed all the 3-6 month clothes.  I know that Hope will keep us very busy and we won't have a lot of free time on our hands after she arrives.  As a result, I knew it was better to be prepared in advance for her and not doing things at the last minute.  As I folded these larger clothes I looked over at Shawn and said, "do you think she'll ever get to wear these?"  He is much stronger than I am at times and simply said, "we're going to hope so!"  So, the drawers in the nursery are full of clean clothes that are waiting for Hope to fill.  I truly pray that she'll be able to enjoy each piece and be here for a long time, wearing all of Sadie's clothes that still sit in storage.

Last Thursday night, we went to a small group of grade 12 students from Centre Street Church to share more about our current journey.  These students were such a blessing to us and presented us with some beautiful things that represented Hope to them.  Shawn was able to hang the pictures on the wall of the nursery this weekend that one of the students had drawn so beautifully.  It will be such a gift to tell Hope about all the people that loved her before she was born.

This is a week free of doctor's appointments, I think it will be good for Sadie.  Lately she's been getting a little nervous when I leave, I think all the babysitters are starting to get to her after all these weeks of appointments.  Next week we leave her with some friends as we travel to Edmonton for 2 nights and 3 days.  Although I feel terrible leaving her, I know it's good preparation for the months we'll be in Edmonton and she'll have to be loved by others as we focus on Hope.

Please pray for us as we deal with the reality of trusting Sadie's care to our friends and family and the feelings of guilt that sometimes creep in.  Continue to pray against the narrowing of Hope's hole in her heart and for her continued growth.  If you've seen me in the last week, you know that she's sure growing!!  Please also pray for the company Shawn works for as they make decisions about his leave of absence and whether or not they will pay him during this time.  Thank you!

Thursday, 26 January 2012

Blessings that are hard to believe

We are truly blessed.  I've been reflecting on that over the last few weeks and can't get over how blessed we are.  I think that many of us have the impression that when good things happen in our lives, God is blessing us.  I now realize that God blesses us when bad things are happening in our lives, sometimes in a greater way.  This experience has been more positive in our lives than it has been negative so far.  We believe that the world is evil and that people are heartless, the news reminds us of this every night.  Every once in a while a story appears of someone who did something nice and we're all shocked.  It happens constantly, I'm truly blown away.  God has taken something terrible in our lives and used it to make us sit back and truly enjoy life.  I see more value in all of my relationships, I see my marriage and my daughter in a new light.  I even have a deeper passion for Bliss cupcakes...is that even possible?

After Hope was diagnosed we found out about 'Sisters By Heart', they are a support group for parents of children with HLHS.  They sent us a care package of supplies that we would need in the NICU for Hope and offered a lot of advice for the road ahead.  Many of the things in the package were donated by parents who had lost their children to HLHS.  I follow their blog and was touched to see a blog about a mom who lost her little boy, Jack Ryan, to HLHS in 2008.  She has made and donated blankets for the NICU that are the perfect size.  Hope was a lucky recipient of one of her blankets and after reading her story, I hold that blanket as a more precious gift.  We also received Baby Legs, these are leg warmers for Hope to keep her warm while she can't have pants or sleepers on.  The company http://www.babylegs.com donated these to Sisters By Heart as well.  I emailed them to thank them for being so generous and caring about the organization.  They emailed back and said that they have sent me a package with some larger ones for Hope's future surgeries!  Seriously?  I am amazed that companies care about our baby and don't even know us at all.

Another amazing gift came from Paper Blanks.  If you have never used one of their journals, I recommend you get over to Chapters and pick one up.  These journals have nice thick pages, lay flat so you can write on both sides and are usually very beautiful to look at (www.paperblanks.com).  I find that investing in a nice journal, gives me the desire to sit down and write.  After journaling one night, I emailed them and thanked them for making such an awesome product that was truly a form of therapy to me currently.  A lady from the company emailed me back and simply said that they were glad I enjoyed their product and wanted to help me continue in my journaling by sending me 3 of them in the mail!!  Really?  I thought only Ellen or Oprah did this sort of thing.  Now I can sit at the Fairmont in Jasper in 3 weeks and enjoy journaling, I have lots of empty pages to fill.  It almost feels like God has rolled out a red carpet, I'm nothing special to the world and yet I seem to be treated as though I have a gift of some kind.

Getting our mail has become an enjoyable activity.  I have always loved mail and have a few friends that I continue to correspond by snail mail with on a regular basis.  Since Hope's diagnosis, the mail has become more exciting and I am surprised at times by the people who take the time to write an encouraging word and send it our way.  What a blessing to see the return address of someone you haven't seen in years, it is with true joy that I take in each one of those cards.  They are precious to me and I keep them so that one day, Hope will know how loved she is, even before she was born.  Friends from afar have sent gift cards to provide us with dinner when they weren't able to make something.  Shawn and I use these cards to go on dates and allow Sadie's grandparents to have a date with her!  It's truly amazing to see the creativity and thought that has gone into some of the things that have shown up on our doorstep, all of them precious and completely valued.

Thank you has truly lost it's value, it seems like such an easy thing to say and we hear it from so many people that it has lost its effect.  I don't know how to express in words how completely humbled and truly thankful we are to the thoughtfulness of so many of you.  It means so much and as my mom likes to tell me, "it's God putting little post-it notes of encouragement into my day".  It truly is, when something like this happens, it changes the course and attitude of my entire day, even my week.  Thank you for providing us with such precious gifts; words of encouragement, gas, food, toys for Sadie, clothes for Hope and even a relaxing massage for me!  You all know who you are, but I wanted to tell you all again, how much we need you and are so thankful for you.

Two weeks from today we'll be in Edmonton to meet with all the doctors, we look forward to our questions being answered.  We also dread the reality of our situation sinking in further and facing a truth that is just around the corner now.  We know that we are not alone, the people that surround us are incredible and there are people who read this blog that I may never meet.  For each of you, we are thankful, we can only hope to meet you one day and introduce you to the little girl that stole a piece of your heart as we fought to keep hers beating.
The first time we saw Hope, before we knew about the struggles that she would face.

Tuesday, 24 January 2012

Pregnancy is truly here now...

I am now over 7 months pregnant and all the "fun" things have returned from last time.  I still feel blessed that I made it so far before it began, but I'm not very happy that it caught up with me.  My lower back is in a lot of pain and picking up Sadie is very difficult.  The top of my belly is going numb from nerves being pinched and my pubis is in extreme pain with each step I take.  I'm trying to stay positive and believe that things will improve, but I'm willing to accept that they won't.

We've finally reached the point of truly considering a cleaning lady, we hate to spend the money but don't want to live in filth either.  I need to keep my strength to care for Sadie and don't want to choose my toilet cleaning over my little girl!

I've had some success in finding side snapping onesies for Hope.  These will be used in the NICU to keep from having to put things over her head (wires and tubes would be in the way), and also to avoid having snaps or zippers that will lay on her incision.  They're not easy to find but I've collected a handful and feel more prepared for Hope's arrival.  A great baby consignment store in Calgary is closing and has everything on sale, I'm sorry for them but happy for my sweet deals!

Tomorrow Sadie and I will spend the afternoon with her Oma, that will save me from picking her up too much and give my back a little rest.  We're very lucky to have family and friends around us that can pick up in the areas that we're lacking.

Please continue to pray that the hole in Hope's heart would not narrow, and join us in praying for some release from the pain my body is experiencing.  Hope is extremely active in the belly and we're feeling her kicks and punches throughout the day.  We're so thankful that she continues to grow and appears to be strong.


Thursday, 19 January 2012

A Fairmont Blessing...

I just wanted to tell you all about something VERY exciting that happened for us today.  We feel completely blessed, and wanted you all to hear about the wonderful people that exist in our world today.

Shawn and I had been looking at going to Fernie for our anniversary in February, but couldn't find a decent rate at the hotels.  I'm not sure if there is a ski competition that weekend or what, all the hotels were very expensive or already full.  I started looking at hotels in Jasper and found much better rates.  We could stay at the Fairmont in Jasper for the same price as the Best Western in Fernie...not a tough decision!

My Aunt Marg has always taught us that, it never hurts to ask.  My mom was talking to me about our trip and suggested I email the Fairmont to see if we could get a nicer room.  I sent them an email and just briefly explained our current situation and how much this weekend away means to us.  I heard back from them this week and spoke to them today.  Wow, did they ever go above and beyond our expectation!  They allowed us to book our room online, where we found an incredible deal, then took our reservation and changed it so that we are in one of the Lakefront suites.  They also offered us the Honeymoon cottage if we wanted, but were told the Lakefront suites were bigger and had a more beautiful view.  Isn't that so kind?

We are now even more excited for our weekend away and the chance to stay in a room we would never be able to pay for.  We know that God does these things in our lives to encourage us when we need it and give us some light in dark situations.  Good thing my Aunt Marg and my Mom were there to push me out of my comfort zone, you never know what someone is willing to do until you ask.

Here is a link to their website if you want to check them out:
"http://www.fairmont.com/jasper"
I'm sure you're welcome there anytime...just not the weekend we're there in February :)