Saturday, 31 December 2011

A New Year with new fear...

2012 is only 5 hours away.  It's hard to believe another year has been completed and a new one is about to begin.  2012 will be an interesting year for our family with so many unknowns.  Currently Sadie has croup and has been having a difficult time sleeping and eating.  She goes through phases of happy and miserable all day.  I wonder if Hope will be cranky when she's sick or if she won't know what it feels like to be healthy when she's a baby.

We got a call this week from the Stollery Children's Hospital in Edmonton.  We've been booked to go there February 9 and 10th to have an echo, ultrasound and a meeting with all the surgeons, cardiologists, neonatologists and anyone else that will be involved in Hope's case.  This is when a lot of our questions will be answered and reality will set in further after a tour of the hospital that Hope will start her life out in.  They also let us know that I'll be delivering at the Royal Alex hospital and will have to stay for at least 24 hours after birth.  This was difficult to hear and caused some tears.  Although they are going to try their best to give me some time with Hope, she won't be with me for long before they take her and Shawn over to the Stollery hospital by ambulance.  I already mourn the loss of those first 24 hours with my baby and yet I feel excited for Shawn to have those precious moments with her.  Shawn will be able to give her the love I can't and he won't have to share her with my mom and I at all!

We've decided to leave Sadie in Calgary during this visit to Edmonton.  We know that she's going to be spending many days away from us after Hope is born and needs to start adjusting.  We've never left Sadie for more than one night.  This will be her first time going for 2 1/2 days without seeing either of us.  We've asked some good friends of ours to take her, so we know she'll be very happy with them and feel safe as well.

During my pregnancy with Sadie I developed SPD (Symphysis Pubis Dysfunction).   It's basically a big word for very sore hips!  As I got bigger with Sadie I started to have a lot of pain while walking and eventually started to have my hips lock and not be able to move.  I was treated throughout the rest of my pregnancy to keep me on my feet and for a long time after she was born to get me back to the normal position.  I started treatments as soon as I found out I was pregnant with Hope and have done very well until this week.  I'm starting to feel that same pain as I'm walking and would ask that you join me in praying it does not get worse and that I'll be able to continue walking and playing on the floor with Sadie.

January 18th is my next echo on the baby's heart and my next OB appointment.  Until then I won't have any medical updates for you, just a reflection of the journey in my heart to share.  I hope you all have a wonderful New Year and I wanted to thank you again for continuing to pray for our family into the new year as well.  I'm home alone, Shawn is snowboarding, as the year changes but I didn't want to bring Sadie near any healthy children.  It's a small taste of the future, I know that being Hope's mom will cause me to miss out on other things in life.  I'm learning to value the time with my child and choose to not miss out on her instead!

Wednesday, 28 December 2011

Can you handle a little more prayer? (please??)

I now have the permission to share this publicly:
Our family is humbling ourselves once again as we come to you all and ask, would you pray for another one of our little ones?  After meeting with the pediatric cardiologist here in Calgary, she suggested that I ask my siblings to have their children scanned as well.  HLHS is a congenital heart defect and is often found in families with previously diagnosed heart defects in children.  They were surprised to find no family history on either side of our families and thought it would be good to make sure there weren't any that had been undiagnosed.  I did not want to email my siblings after this, I felt like it was undue stress to put on them and that the kids all seemed very healthy.  After some time, and encouragement from my mom, I sent the email and decided to put the responsibility in their hands.

Ryan and Christen were able to get an appointment with their family doctor and booked the echos within a week.  Lindsay and Andy have met with the doctor but need to be referred to a cardiologist before their children can be booked for scans.  The doctor that did see them looked for signs of heart defect and didn't see anything concerning and feels that they will likely have clear scans when they are completed sometime in the New Year.  Sadie has a scan booked for January 10th....we are praying that she is clear of any heart defect, and find ourselves thinking.....would God really allow us to walk through this with both of our children?

The day before Christmas Eve, we got the devastating news that Ziah's echo (Ryan and Christen's son) came back showing a very rare congenital heart defect.  At this point they are waiting to meet with a specialist on January 12th to look at the echo and get some much needed answers.  Their family doctor was not able to offer a lot of information and was totally unfamiliar with the diagnosis.  I was able to get ahold of my pediatric cardiologist here in Calgary before Christmas to get a little more information for them.

At this point we know that Ziah has atrial septal defect (ASD), a hole in his heart.  The echo does not say what size the hole is and this information will make a HUGE impact on how they treat it.  If the hole is very tiny, they may do nothing as this happens with small children and will close on it's own most likely.  If the hole is a little bigger than they like, they may repair it with a catheter.  If the hole is huge, this may require open heart surgery to be repaired and is the least desirable situation as we hope Ziah will not have to have surgery at all, of course!  The written part of the echo does not sound like the hole is large but until the pictures are looked at by a specialist, we can't know for sure and will have to wait.

Ziah appears to also have Cor Triatriatum Dexter, I bet that's a new term for most of you!!  This means that his right atrium is subdivided by a thin membrane that essentially gives him a 5th chamber in his heart.  It's weird to know that Ziah has 5 chambers and Hope only has 2.  We've heard a few different results for this and again, we need to wait until the experts look at his specific scan to give us the next steps that he'll face.  There is a chance they will be able to leave it and simply keep him under observation as the two chambers are communicating and the blood is pumping through the membrane.  If the specialist feels that the membrane is going to cause problems in Ziah's life and future, he may be looking at surgery for this defect as well.

So, as you can imagine we would like you to PRAY!! We have two weeks to ask the Lord to heal this little man and work a miracle in his heart.  We are praying that when he sees the specialist there will no longer be a hole in his heart, that the membrane would not be in a position that will cause problems and will heal on it's own or be gone!  We are praying that he will not need surgery and will live a long and healthy life.  We are thankful as a family that Hope's condition has allowed us to find out about Ziah and have the opportunity to watch him closely and get him the medical attention that he needs.  We are thankful that this heart defect is fixable and has a good prognosis.

God must have big plans for this little boy in bringing this to light in such a way.  We also believe that he'll be able to encourage Hope and tell her that without her condition, we would have never known about his.  God has used Hope to bring our family to our knees, deepen our love for one another and our children and to encourage others.  We pray that Hope continues to make a deep impact in this world and believe that our God is capable and has both Hope and Ziah in His great hands.

Happy Birthday to me!!

Today is my 28th birthday and I am blessed to celebrate it with my parents!  This morning we had pancakes after sending Shawn off to work and I was blessed by a surprise flower delivery too!  We then headed out to meet with my new Obstetrician in Calgary at the hospital.  My dad got the fun task of entertaining Sadie while my mom and I were meeting with the doctor.  She was a very nice woman and seemed willing to spend time with us to answer questions.  My mom was able to hear little Hope's heart beating for the first time.

Hope continues to measure a little small on the outside of the belly but measures perfectly in ultrasounds, which are more accurate for growth.  On January 18th we go for our next Echo of Hope's heart and will also meet with the Obstetrician once again that morning.  At this point it still appears that Hope is not battling any other health conditions or defects and we praise the Lord for that.  We are blessed to know that although she has a severe heart defect, she doesn't have the added burden of other conditions as far as they know.

This afternoon my mom and I are going to have lunch with a couple of my girlfriends and my dad is again being kind enough to keep Sadie busy while we're gone.  Going through this trial in life, I have a new appreciation for my friends and family and value them in a special way.  When Shawn gets home we'll go out and celebrate my birthday together in my favourite way, at a restaurant!!

Christmas was nice and relaxing this year, that is always a gift.  It was nice to wake up in our own home and have a slow relaxing day of puzzles, games and good food.  We feel very blessed by the gift of God's son and the salvation we have in him.  It is a blessing to know that, although Hope will only have 1/2 a heart while she's here with us on earth, she'll have a perfect body in heaven for all eternity.

With Christmas over and the new year around the corner, we know that our due date will arrive quickly as well.  We have an appointment booked in early February to meet with all the surgeons and specialists we'll be working with in Edmonton to plan for our delivery.  It will be great to picture where we'll be and have some of our questions about delivery answered.  It will also be hard though, as reality will set in once again of what is ahead.  Thank you for continuing to lift us up in prayer, it is the greatest gift.

Wednesday, 21 December 2011

The 4th Ultrasound

Today we had our 4th ultrasound with baby Hope.  She appears to be right on track with her growth and all her other organs and limbs look just fine.  She has done a wonderful thing and turned around so her head is now down.  That will make our chances of a natural delivery more possible than if she remained in the breech position.

Our cousins, Mark and Laurel, were in town visiting and were able to join us for the ultrasound to meet Hope and keep Sadie from pulling any important cords out of the wall.  This appointment was relatively short in comparison to the ultrasound/echoes we have.  Our next echo is going to be in January and will be another 2-4 hour long appointment.  I don't think we'll even attempt to bring Sadie along for that adventure.    I may have to bribe Shawn to get him to come along, this time we won't forget to pack some snacks!

We are very thankful that other than her heart, Hope is looking very healthy and should be quite strong.  They saw no signs of heart failure or anything else obvious when they took a quick look at the heart today. Thank you for praying for us, we praise the Lord for the positive report today and only pray that the good reports continue as we wait to meet her.

Friday, 16 December 2011

One Month Ago

Today marks the one month anniversary of Hope's diagnosis.  It feels like forever ago and also like yesterday.  I can replay the entire morning in my head like a movie I've seen in the past.  I still remember what I fed Sadie for breakfast and exactly what outfit I dressed in her before we left the house.  I remember Sadie playing in the ultrasound waiting room and feeling stressed because nature was calling and I couldn't answer without emptying my bladder at the same time!! haha  It would be nice to go back to the days when that was a stressful thing in my life.

Today we are 23 weeks pregnant, only 17 weeks until our due date arrives.  I think about the day I go into labour and know that it will stir up great relief, that the waiting is over, and horrible fear for the real adventure and emotional roller coaster will begin.  I worry I won't have prepared myself enough and have the strength I'll need.  I also realize there's no real way to prepare for it and I'm going to have to 'wing it' anyway.  I'm already mourning the loss of time with Sadie.  She's learning so much everyday and changes so quickly.  Each day she starts saying new words and discovering something different in her world.  I resent the fact that I won't be able to be with her often right after Hope is born and will miss out on this part of her journey.

I've found myself EXTREMELY sensitive warned!  I don't seem to have the strength to just let things bounce off me or refuse to accept negative comments upon myself.  I feel like an emotionally wounded child that is a sponge and can't seem to cast off the things that are not right to carry.  I need to learn to communicate this better and find a way to kindly say to people, "that hurt my feelings" or "I find it difficult when you make comments like that".  Negative comments about almost anything are crushing, I feel like a lot of my world is negative and I search for positivity in people and conversations and crave it more than anything.  Please pray for me, that God would help me communicate this to those around me in love and that it would be a positive thing in all our lives.  We all complain a lot about such silly things, I'm a good complainer too so I know!!

I've been mourning the loss of freedom.  The idea that we can't go to Ontario this summer and I won't be able to spend time with my family at the cottage.  Instead, I'll likely be in Edmonton with Hope going through the second surgery.  The reality though is that I'll be more blessed to be in Edmonton as it will mean our baby survived the first surgery and that being at the cottage is actually where we'd end up if we lost our fight with Hope.  

Any of our friends in Calgary would agree that our house is very cold, all the time.  We have our thermostat up very high and it feels like it's at 15 instead of 25.  We know that Hope will have poor circulation and will not tolerate this well.  We can't afford to have Hope getting sick just because our house is too cold.  As a result, we're keeping very busy as we ready our home for Hope and work at making it a warmer place.  Next week we have a new furnace being installed and we'll say goodbye to the furnace that has been chugging along since 1964.  We're having multiple quotes done on our windows as they are VERY expensive and also necessary to replace.  I spend most mornings with some strange man from another window or furnace company giving me a quote.  When we're done with all the renos, you'll all be able to stop packing your wool socks, slippers and blankets every time you come over.  You can thank Hope for that one!

Thank you to all of you who have given your hearts to Hope already and committed to praying for her as she continues to grow.  We truly thank you for the last month and beg you for the next few months as well!  We know that there is an army praying for our little girl and our family and we are truly blessed.  If you don't live here, please pray for the people that surround us in Calgary, I'm sure being around us can be very draining right now.  To say that we're a bit "needy" feels like an understatement, it's sad but true.

Monday, 12 December 2011

Crafts and Kicks

Another weekend has passed bringing us closer to meeting Hope.  On Sunday morning as we woke up I placed Shawn's hand on my stomach and he was able to enjoy Hope's kicking for the first time.  It is always such a beautiful thing when the dad gets to feel the baby kick for the first time and it all becomes more real.  We are so grateful that Hope will continue to grow and develop normally while she waits in the womb to meet the outside world.  At this point, her body is totally unaware of her missing left ventricle.

On Saturday morning we took Sadie to a Santa Claus breakfast at the community centre next to our house.  As we expected, santa was not a welcomed sight in Sadie's day and she cried as soon as she was near him.      
second attempt was also a fail

no love for santa at the mall

We've come to realize that we won't get a photo of Sadie smiling on Santa's knee this year no matter how many different Santas we bring her to visit!

After the breakfast, Shawn headed home with Sadie while I looked around the craft sale at all the treasures.  I was looking at some really pretty hats and started chatting with the women that were making them.  They were both moms and began asking me questions about my pregnancy.  Naturally, it gets to a point where I would either have to lie or share the situation with Hope.  As I shared with these women they began to cry, one of them reached onto the table and handed me a little teal hat and said that she wanted Hope to have it.  I obviously started to cry myself, I was so touched by her kindness and felt overwhelmed that a stranger wanted to give a gift to our little girl.  With Hope's circulation being poor, hats will be real important for her after she's born.  I love the hat and will definitely order more from 'Hoots n' Hats' if we need them for Hope.  I put a picture of the hat below in case any moms in Calgary are looking for a great company to order hats from!
Hope's first hat!

On Friday morning (I seem to be going through the weekend backwards!) I was blessed with a Sadie-free morning.  My second cousin, Cheryl, took Sadie so I could finish up my Christmas shopping at the mall.  It was so nice not to have someone telling me when I should be finished looking!  It was also a tough morning on me emotionally as I walked around the mall.  I realize that I'm expecting a baby, but it still feels almost odd to buy things for her.  I was looking at some things in the Bay and I felt like a woman without kids that was buying baby clothes for no reason.  It really is a step of faith to buy things for our Hope when we don't know how long we'll have her.  I really believe it's an important step for me in trusting God with Hope and moving forward, believing that I will have her.  Shawn also reminded me that there are so many babies in need and if we weren't able to use the things we buy, we could always bless someone else with them.

I stopped in the Pottery Barn to buy another Christmas stocking and as I checked out, the cashier asked, "would you like to donate to the Alberta Children's Hospital?"  It was just another reminder of where we were headed and how much I would need the Children's Hospital in the years to come and how fortunate we are to have one so close.  I'm coming to the conclusion that no matter what I do, I can't get away from the reality that faces us with Hope and it reminds me to be on my knees.  I don't have the strength to go Christmas shopping without asking God to give me the strength I need so I won't sit on the floor in the mall and cry.  I did sit on my kitchen floor and sob for Hope in the afternoon on Friday but was able to pull myself together and know that we had friends coming over with dinner that night to keep us busy and remind us that we are not alone.  We are truly blessed by those around us and some days that is the only thing that makes you get off the floor!

We have our next ultrasound in 10 days.  We won't have any medical updates until then but we'll do our best to keep you in the loop with how we're doing overall.

Tuesday, 6 December 2011

Early Birthday Gifts!

I have some wonderful news, I found out today that I got an appointment with the OB at the hospital on December 28th.  That is the day of my 28th birthday and the day before I was supposed to go back to the maternity clinic.  I had the pleasure of calling to cancel my appointment for the 29th and my mom will be able to come meet my OB while she's here too.  That may not excite some of you but trust me, my mom will enjoy coming to that visit and knowing who's taking care of me.

I spoke with a woman today at the Ronald McDonald House in Edmonton and we are officially on the waiting list for our arrival on March 23rd.  At this point you have to stay on the waiting list as they won't 'kick' a family out.  If a family that is currently there were to find out they needed to stay longer, it could delay us getting our room on the 23rd.  They do have connections with hotels by the hospital to get us great rates while we wait if we need them though.  We'll find out the week before where we stand and can make plans from there.  Let's start praying for healthy kids that get to go home and make room for our family to move in!

I watched a tour of the house on youtube today and was really excited for Sadie to go.  It looks like heaven for a kid to live in that house.  She is going to have a million new things to play with and explore.  I'm hoping to have her up in Edmonton as much as we can but we realize the difficulty with childcare may limit that ability.  We'll have to see as the time draws closer.

I still have my hours of tears through the day but I am feeling stronger this week than last.  I think I feel emotionally drained more this week some how though.  Sadie has a cold and has been keeping us up at night, it's always harder to start a day with no sleep.  I'm finding it hard to make it out on social engagements as I just feel like a sack of hammers that needs a nap...and a shower!  I'm hoping she'll get better quickly and that God will protect Shawn and I from her germs too.  I think I need to take a day for myself in the next couple of weeks and just go shopping alone or something for the day.  Overall I'm still finding great comfort in the Lord and His promises.  I find most of my tears come when I read another child's story or think about the hardships that are coming.  I don't feel angry at all, just sad.

One of my greatest struggles in communication with others is the long term realities of Hope's condition.  It comes so naturally for people to say, "everything will be okay" or something along those lines.  I get the idea that a lot of people think if she survives her 3 surgeries that she's home free.  I wish that were true but realize it's not.  Many children with HLHS make it through the surgeries, it's heart failure that is so dangerous for them and can take them years after the surgeries are completed.  I beg each of you not to forget us as this journey continues.  We are desperate for your prayers now, as we wait, but also as Hope lives with us.  This is not a journey that will taper off, she will always have 1/2 a heart and that is a reality we need to face.

Sunday, 4 December 2011

Precious Hope

We started the weekend with the blessing of this gift.  Friends of ours had this beautiful necklace made for us to treasure as we wait for Hope's arrival.  We were so touched and love the idea, it's gotten me on a real 'Hope' kick and I spent some time looking at things online this weekend that would be neat to decorate her nursery with as well.  It was a pretty great weekend; we played games with some friends on Friday night, had dinner with the family and watched a movie on the couch on Saturday and spent Sunday doing some Christmas shopping and watching Amazing Race with our neighbours, it's our tradition for Sunday nights.

I will likely have one more appointment at the maternity clinic that I don't enjoy but was able to book that appointment while my parents are here.  I'm sure my mom will keep me grounded while I'm there and remind me that I can make it through the appointment and stay strong.  Hope is moving around like crazy now and still enjoys doing a dance on my bladder.  They say you stop having the urge to pee so often by this stage of pregnancy but that is simply not true!

We've made contact with the Ronald McDonald House in Edmonton and are starting that process.  Please join us in praying that we'll be able to move there directly on March 23rd and don't need to move around multiple times.

Thank you for continuing with us and praying for us, here is our latest belly update photo:

Thursday, 1 December 2011

Two blogs in a row...a bad sign!

When I have enough to say two days in a row, it's not usually a great sign.  Today I had my first appointment at my old maternity clinic since the diagnosis.  I have been referred to an OB at the hospital but am still waiting to get in and had to go to the clinic to be weighed and such today.  The nurse that came into the room had clearly not opened my file before entering.
She noticed the baby had HLHS and started by saying, "that's not a big deal, they can fix that so don't even worry about it."  I now realize this woman has no idea what she's talking about and I'm hoping it's all over quickly.  She proceeds to take forever in measuring me, tells me my baby is measuring too small and then asks if I have any questions about the diagnosis she could answer.  Why would I ask her a question about something she's clearly uneducated about?  Wouldn't it have been better for her to say nothing at all?  When she left the room I sat waiting for the doctor and all I could hear was the heartbeats of everyone else's babies in the rooms around me.  This was tough, I felt jealousy towards the other women that were having routine visits and would then carry on with their days.

The doctor was a lot better and started by apologizing for the diagnosis, stated he was not an expert but was willing to talk if I needed to.  He said I'd likely have to see them there once more before I get into the OB at the hospital as that wouldn't happen until the new year.  Please join me in praying that I can get in BEFORE the new year so I don't have to go back to the clinic.  It's truly painful to have someone come speak to you that knows nothing about your situation and then proceeds to go out in the hall and talk about you to the other nurses and you can hear them!  I asked the doctor about the size of the baby, he had all the results from the ultrasounds that are more precise than a measuring tape on my stomach.  He said the baby is a perfect size and even a little pudgy around the belly with a big head.  Sounds fun to birth!

Overall my day was full of time with good friends and that made it easier.  My friend had come with me to the appointment at the clinic which meant I didn't have to get into the car and ball all the way home.  Instead I got to talk with her and stay calm.  After dinner tonight I was looking at another HLHS baby's blog and made a terrible mistake.  I have seen pictures of these babies in bath tubs with scars that are all healed and look not too bad.  I looked at post surgery pictures tonight, not realizing how drastically different they would be and how hard they would be to see.  I absolutely lost it as I thought of my little Hope with all those tubes and that horrible cut down the centre of her chest.  Overall it's a good thing for me to prepare myself for but I was surprised by my reaction.

Thankfully tomorrow is Friday and I have some plans during the day to keep myself busy and then I'll have Shawn home with me for the weekend.  I hope we have an amazing weekend full of some laughs so I can make up for all these tears lately!