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!
Saturday, 31 December 2011
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.
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.
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.
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 lately...be 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.
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 lately...be 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.
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!
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.
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| second attempt was also a fail |
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| 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.
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
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!
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!
Wednesday, 30 November 2011
Some days are tough...
I wasn't planning on writing anything today, I was even explaining to my mom why it wasn't "worthy" of a blog entry. Then I remembered that I had promised to be honest as I walked through this journey and felt guilty that I'd asked you to come along but was only sharing my strong days with you. Today was not one of those days and it was a tough one.
I was laying in bed last night when the sadness started, I started to feel alone in my pain. I tried to explain it to Shawn and although I felt like I knew why, I didn't know how to explain it to someone else without offending. I need to be clear when I say, our friends and family have been VERY supportive and there is nothing they're doing wrong. I just realized that when tragedy strikes it shocks people, the first time you heard about Hope it was shocking and sticks with you. Together we carried that shock and the weight of the situation. Over time the rest of the world has to go back to their normal lives, I've done it myself as I walk through tragedy with friends. Life continues and nothing has changed, it's a sad story but you still have to live your lives. I feel like the only one who can't just continue to live a normal life and it's lonely. I have a long waiting period, another 4 months before the real journey begins.
Last night I had one dream after the next of Shawn and I meeting other families who have children with HLHS. In most cases they were actual people that keep blogs I've read but have never met. It was like my entire sleep was consumed with thoughts about Hope's heart and I had no way to wake up and get away from it.
Today I had a ton of love from friends; I had a friend here for lunch, dinners dropped off and a friend here for dinner. It's not that I'm truly alone, I just feel alone in my pain. Today was one of those days that I carried tears right on the edge of my eyes and fought to keep them back. At times they fall without permission but I spent most of the day controlling them and saving myself from a cry headache! My hope is that I'll wake up fresh tomorrow and ready to be strong again but for today I feel tired and like I'm not strong enough for this fight. I would truly appreciate your prayer not only for Hope but also for us!
I was laying in bed last night when the sadness started, I started to feel alone in my pain. I tried to explain it to Shawn and although I felt like I knew why, I didn't know how to explain it to someone else without offending. I need to be clear when I say, our friends and family have been VERY supportive and there is nothing they're doing wrong. I just realized that when tragedy strikes it shocks people, the first time you heard about Hope it was shocking and sticks with you. Together we carried that shock and the weight of the situation. Over time the rest of the world has to go back to their normal lives, I've done it myself as I walk through tragedy with friends. Life continues and nothing has changed, it's a sad story but you still have to live your lives. I feel like the only one who can't just continue to live a normal life and it's lonely. I have a long waiting period, another 4 months before the real journey begins.
Last night I had one dream after the next of Shawn and I meeting other families who have children with HLHS. In most cases they were actual people that keep blogs I've read but have never met. It was like my entire sleep was consumed with thoughts about Hope's heart and I had no way to wake up and get away from it.
Today I had a ton of love from friends; I had a friend here for lunch, dinners dropped off and a friend here for dinner. It's not that I'm truly alone, I just feel alone in my pain. Today was one of those days that I carried tears right on the edge of my eyes and fought to keep them back. At times they fall without permission but I spent most of the day controlling them and saving myself from a cry headache! My hope is that I'll wake up fresh tomorrow and ready to be strong again but for today I feel tired and like I'm not strong enough for this fight. I would truly appreciate your prayer not only for Hope but also for us!
Tuesday, 29 November 2011
The blessings are new every morning
Many people have asked how we're doing, it sounds wrong to say great but we'd be lying to say we were terrible. I struggle sometimes to move forward in life, I feel guilty at times when I live like nothing has changed. I have to remind myself each day that God's peace is what brings joy into each day and that although we continue to live our lives, we never cease to pray for Hope.
I work hard at staying busy and have wonderful friends who have helped keep my calendar booked. It's been wonderful to see Hope's name all over the city with Christmas coming. We are constantly reminded that our little girl is coming and praying that she gets to stay for as long as possible. We still cry at random times, tonight we were watching a documentary about lottery winners. It seems like a safe movie to watch but we were very wrong, a scene of a family having an ultrasound made us both tear up again. I'm learning that it's okay to cry, but that if I make it through a day without tears, that's okay too.
Each day comes with new blessings, we find joy in the smallest things these days. I've learned to appreciate each and every gift and not let things pass unnoticed. Thank you to everyone who has been the blessing, or brought the blessing!
I work hard at staying busy and have wonderful friends who have helped keep my calendar booked. It's been wonderful to see Hope's name all over the city with Christmas coming. We are constantly reminded that our little girl is coming and praying that she gets to stay for as long as possible. We still cry at random times, tonight we were watching a documentary about lottery winners. It seems like a safe movie to watch but we were very wrong, a scene of a family having an ultrasound made us both tear up again. I'm learning that it's okay to cry, but that if I make it through a day without tears, that's okay too.
Each day comes with new blessings, we find joy in the smallest things these days. I've learned to appreciate each and every gift and not let things pass unnoticed. Thank you to everyone who has been the blessing, or brought the blessing!
Friday, 25 November 2011
Halfway to Hope.
Today marks the halfway point in our pregnancy, 20 weeks until we arrive at our due date and know that, if we have yet to deliver...the doctors will make it happen! We look forward to holding our Hope and seeing her face for the first time. The last few days I have started to feel numb in a way and worried that I wasn't constantly crying any longer. As I was driving today I finally realized that I wasn't numb, I was experiencing peace.
We already feel that our little girl has so much purpose. Her heart may be 1/2 the size it should be but her impact is so much greater in this world as a result. She has already been a testimony of faith and hope in Jesus Christ. Can you be proud of a child that has yet to be born? I have a feeling she's going to be a pretty tough little girl.
Thank you everyone for your continued encouragement to our family and your prayers for Hope. We are blessed by the support that surrounds us and we feel stronger standing with each of you around us.
We've been keeping ourselves busy by setting up a 'Big Girl' room for Sadie. It's coming together nicely and although we have no idea when we'll move her into it, it's a wonderful distraction. We do plan to ready the nursery for Hope before we leave for Edmonton. It's a step of faith as we can only pray we are able to bring her home with us. It's important for me to move forward in faith and stay as positive as possible, it's a way to protect myself from allowing doubt to consume me.
Tonight is Shawn's company Christmas party. We're looking forward to a date night and the opportunity to sleep in tomorrow morning! Sadie will be with her Oma and Opa and we know she'll be having a blast as they love her like crazy. I'm sure she'll get her hands on a treat or two if she asks often enough :).
Over the next 20 weeks we'll be sure to post any information we receive from scans or appointments we have at the doctor. It'll be a long wait but we'll make it to April before we know it!
We already feel that our little girl has so much purpose. Her heart may be 1/2 the size it should be but her impact is so much greater in this world as a result. She has already been a testimony of faith and hope in Jesus Christ. Can you be proud of a child that has yet to be born? I have a feeling she's going to be a pretty tough little girl.
Thank you everyone for your continued encouragement to our family and your prayers for Hope. We are blessed by the support that surrounds us and we feel stronger standing with each of you around us.
We've been keeping ourselves busy by setting up a 'Big Girl' room for Sadie. It's coming together nicely and although we have no idea when we'll move her into it, it's a wonderful distraction. We do plan to ready the nursery for Hope before we leave for Edmonton. It's a step of faith as we can only pray we are able to bring her home with us. It's important for me to move forward in faith and stay as positive as possible, it's a way to protect myself from allowing doubt to consume me.
Tonight is Shawn's company Christmas party. We're looking forward to a date night and the opportunity to sleep in tomorrow morning! Sadie will be with her Oma and Opa and we know she'll be having a blast as they love her like crazy. I'm sure she'll get her hands on a treat or two if she asks often enough :).
Over the next 20 weeks we'll be sure to post any information we receive from scans or appointments we have at the doctor. It'll be a long wait but we'll make it to April before we know it!
Wednesday, 23 November 2011
She's a she and she has a name!!
We are thrilled to introduce you all to our unborn little girl, Hope Taylor Koslowski. We received the news this morning that confirmed the first suspicion, she is a girl!
Wow, where to begin to sum up our appointment, it was 4 hours long and we will never forget to bring snacks again. We started with a tech that did our Ultrasound/Echo on the baby's heart for about an hour. It was long and a little boring. She asked at one point if we were going to fall asleep as the lights were low and we were both tired after a bad night with Sadie. When she was finished the doctors had to take a look at it so the waiting began...we waited for almost an hour!
A team of 3 doctors came into the room and said they had a few things they wanted to look at again and started the second Ultrasound/Echo. This one was only 15 minutes and they did talk amongst themselves but they spoke in a bit of code, "yeah, I don't see that thing that we thought we saw". Nothing we could pick up so we just sat and listened to them but didn't say anything.
When this was finished and the top of my pants was now officially soaked in the ultrasound gel, we were done with the tests. We were lead into the consultation room to begin waiting, again. We were there for about 20 minutes before 2 of the 3 doctors returned. They began with the picture (a good one this time) of a regular heart and what it looked like. Once she was finished she pulled out another sheet with a regular right side and a very miniature left side. She explained that our baby girl does have a very small left ventricle but that it is not pumping any blood and is thought to be useless.
They officially confirmed our diagnosis of HLHS and informed us that we have a very severe case on our hands with the left side doing no work. They asked us how we wanted to proceed and we were able to let them know that we were choosing to move forward with the surgery. She began to walk us through the surgeries in detail, answer our questions and give us a lot more clarity. After speaking with the doctor we are very confidently choosing to undergo the surgeries at the Children's Hospital in Edmonton. They then began to go through some details for the rest of our pregnancy.
Shawn and I will now be seeing an OB in Calgary for the rest of our pregnancy and receiving scans every few weeks to continue to track the baby's growth. At this point the right side of the heart looks VERY healthy and strong, no leaks or weak spots. They will continue to look at this as it is good news for us going into the surgery with zero working parts on the left side of the heart. The OB in Calgary will also be important if I happened to go into early labour for any reason. Little Hope would then be airlifted to Edmonton.
We will be travelling to Edmonton at 32 weeks pregnant to meet with all the doctors we'll work with after birth. We'll be undergoing a lot of the same tests so they can become personally familiar with our case and confidently treat our little girl. We are going to be moving up to Edmonton at 37 weeks pregnant and have been cleared to deliver naturally! As long as there are no complications we won't have to be C-sectioned as this is harder on the baby's lungs. I won't be allowed to make it to my due date and will be induced if I get close. Sadie's heart rate plummeted from the induction drug and we are praying against this. Please join us in praying that I will go into natural and healthy labour sometime after we get to Edmonton and before 39 weeks ends. Hope will be delivered and then taken with daddy to the children's hospital. Once I am cleared to leave I will be allowed to go over and join them in the NICU.
After Hope is born she will be given a medication to keep the duct open that is pumping the blood to the rest of her body. This drug can cause some breathing issues and she may need to be on a ventilator but we won' know until we get there. The surgery will take place somewhere between day 3 and 7 of her life. We are thrilled to have this time with her before the operation and were thrilled that she wouldn't be taken right away. We won't be allowed to breastfeed during this time as it will be too difficult for her to eat and breath with the condition of her lungs. I am able to pump and have them feed the milk to her through a feeding tube. After surgery the average recovery is 4-6 weeks in hospital if there are no complications. If Hope is in a stable non-surgical place, they will airlift her back to Calgary so that we can continue her care here and sleep in our own beds!
Hope's second surgery will take place between 4-6 months of age, this surgery is much less dangerous than the first, although it is still open heart surgery. The third and final surgery will take place between 1-3 years of age. It is totally based on the weight and strength of the child. They need the child to be at least 30 pounds and will wait for that time before operating. Besides the surgeries there will be MRI's and cardiac catheters for other testing. This is our best case scenario with no other complications coming into play.
The first surgery has a lower percentage of surgical deaths than we first thought and are happy to hear that. We will be most at risk until the second surgery is completed. During this time there is a lot of risk of sudden death and other complications related to the heart defect. This will be a time of extreme faith and trust in our God as we keep Hope in his hands. We know that God gives us our children as a gift, but they are His no matter what. We pray that God will bless us with a long time to love Hope but we know that if he doesn't, she gets to be with Him instead!
They did not see any signs of other defects or syndromes. At this point it appears that we are only battling the HLHS and for that we are thankful. Being a girl, Hope has a chance of Turners Syndrome but does not show any markers for it currently. We have decided against and amnio and will find out only after she's born if this is something to worry about. Please pray against this with us as well.
Other than surgeries and complicated procedures that need to be done, the rest of our care can happen in Calgary. We are truly lucky to have a children's hospital in our city and will get a bit more time at home as a result. We are also lucky that Edmonton is driving distance from our house (3 hours) and that we know some people who live there.
We are struggling with the fact that they can not give us a life expectancy for Hope but have told us that she will need a transplant in adult or teen life. Her chances of ever carrying a child of her own are very slim because of the danger to her health. These are all things that we don't enjoy hearing and mourn for the loss of her dreams already. We pray that she is passionate about adoption and drop dead gorgeous so that any man would not be able to help but marry her, even if they couldn't have a promised future with her.
We were told that as a child she will be able to keep up with other children and run around. Once she is a teen she will notice shortness of breath and fatigue but they strongly encourage her to exercise. It will strengthen the right side of her heart and is not dangerous for her. Contact sports are out because of the blood thinners she'll be on but she could play soccer like her daddy. Maybe she'll hate sports like her mom and won't notice the inconvenience at all! HLHS babies are found to have a slightly lower than average IQ. Knowing this in advance we plan to have Hope in music and language studies to give her a little boost in the brain. We are praying she'll make the honour roll anyway and be spared from learning difficulties that will frustrate her.
Please continue to pray with us for Hope and for the rest of the pregnancy. It looks like she will carry to the end and continue to grow, for that we are thankful. Our prayers is for an on time delivery that does not need an induction, just like in the movies! We are hoping to be able to successfully deliver naturally, that also means my mom would be able to join us for the delivery and that is a special gift. We are praying that she will be strong at birth, that her lungs will tolerate the medication well and that her first surgery will be successful and that she'll recover easily from it. We are praying for peace about having to leave Sadie so often with others and not be able to love on her ourselves. We are blessed to have so many people that we trust to watch her, that is a gift. Most of all, we are praying that this little princess proves them all wrong and grows the left ventricle to normal size and begins pumping blood to her body herself.
Thank you for caring and for your support. Our journey continues and we will have many different struggles and appointments so we'll continue to keep you posted.
Wow, where to begin to sum up our appointment, it was 4 hours long and we will never forget to bring snacks again. We started with a tech that did our Ultrasound/Echo on the baby's heart for about an hour. It was long and a little boring. She asked at one point if we were going to fall asleep as the lights were low and we were both tired after a bad night with Sadie. When she was finished the doctors had to take a look at it so the waiting began...we waited for almost an hour!
A team of 3 doctors came into the room and said they had a few things they wanted to look at again and started the second Ultrasound/Echo. This one was only 15 minutes and they did talk amongst themselves but they spoke in a bit of code, "yeah, I don't see that thing that we thought we saw". Nothing we could pick up so we just sat and listened to them but didn't say anything.
When this was finished and the top of my pants was now officially soaked in the ultrasound gel, we were done with the tests. We were lead into the consultation room to begin waiting, again. We were there for about 20 minutes before 2 of the 3 doctors returned. They began with the picture (a good one this time) of a regular heart and what it looked like. Once she was finished she pulled out another sheet with a regular right side and a very miniature left side. She explained that our baby girl does have a very small left ventricle but that it is not pumping any blood and is thought to be useless.
They officially confirmed our diagnosis of HLHS and informed us that we have a very severe case on our hands with the left side doing no work. They asked us how we wanted to proceed and we were able to let them know that we were choosing to move forward with the surgery. She began to walk us through the surgeries in detail, answer our questions and give us a lot more clarity. After speaking with the doctor we are very confidently choosing to undergo the surgeries at the Children's Hospital in Edmonton. They then began to go through some details for the rest of our pregnancy.
Shawn and I will now be seeing an OB in Calgary for the rest of our pregnancy and receiving scans every few weeks to continue to track the baby's growth. At this point the right side of the heart looks VERY healthy and strong, no leaks or weak spots. They will continue to look at this as it is good news for us going into the surgery with zero working parts on the left side of the heart. The OB in Calgary will also be important if I happened to go into early labour for any reason. Little Hope would then be airlifted to Edmonton.
We will be travelling to Edmonton at 32 weeks pregnant to meet with all the doctors we'll work with after birth. We'll be undergoing a lot of the same tests so they can become personally familiar with our case and confidently treat our little girl. We are going to be moving up to Edmonton at 37 weeks pregnant and have been cleared to deliver naturally! As long as there are no complications we won't have to be C-sectioned as this is harder on the baby's lungs. I won't be allowed to make it to my due date and will be induced if I get close. Sadie's heart rate plummeted from the induction drug and we are praying against this. Please join us in praying that I will go into natural and healthy labour sometime after we get to Edmonton and before 39 weeks ends. Hope will be delivered and then taken with daddy to the children's hospital. Once I am cleared to leave I will be allowed to go over and join them in the NICU.
After Hope is born she will be given a medication to keep the duct open that is pumping the blood to the rest of her body. This drug can cause some breathing issues and she may need to be on a ventilator but we won' know until we get there. The surgery will take place somewhere between day 3 and 7 of her life. We are thrilled to have this time with her before the operation and were thrilled that she wouldn't be taken right away. We won't be allowed to breastfeed during this time as it will be too difficult for her to eat and breath with the condition of her lungs. I am able to pump and have them feed the milk to her through a feeding tube. After surgery the average recovery is 4-6 weeks in hospital if there are no complications. If Hope is in a stable non-surgical place, they will airlift her back to Calgary so that we can continue her care here and sleep in our own beds!
Hope's second surgery will take place between 4-6 months of age, this surgery is much less dangerous than the first, although it is still open heart surgery. The third and final surgery will take place between 1-3 years of age. It is totally based on the weight and strength of the child. They need the child to be at least 30 pounds and will wait for that time before operating. Besides the surgeries there will be MRI's and cardiac catheters for other testing. This is our best case scenario with no other complications coming into play.
The first surgery has a lower percentage of surgical deaths than we first thought and are happy to hear that. We will be most at risk until the second surgery is completed. During this time there is a lot of risk of sudden death and other complications related to the heart defect. This will be a time of extreme faith and trust in our God as we keep Hope in his hands. We know that God gives us our children as a gift, but they are His no matter what. We pray that God will bless us with a long time to love Hope but we know that if he doesn't, she gets to be with Him instead!
They did not see any signs of other defects or syndromes. At this point it appears that we are only battling the HLHS and for that we are thankful. Being a girl, Hope has a chance of Turners Syndrome but does not show any markers for it currently. We have decided against and amnio and will find out only after she's born if this is something to worry about. Please pray against this with us as well.
Other than surgeries and complicated procedures that need to be done, the rest of our care can happen in Calgary. We are truly lucky to have a children's hospital in our city and will get a bit more time at home as a result. We are also lucky that Edmonton is driving distance from our house (3 hours) and that we know some people who live there.
We are struggling with the fact that they can not give us a life expectancy for Hope but have told us that she will need a transplant in adult or teen life. Her chances of ever carrying a child of her own are very slim because of the danger to her health. These are all things that we don't enjoy hearing and mourn for the loss of her dreams already. We pray that she is passionate about adoption and drop dead gorgeous so that any man would not be able to help but marry her, even if they couldn't have a promised future with her.
We were told that as a child she will be able to keep up with other children and run around. Once she is a teen she will notice shortness of breath and fatigue but they strongly encourage her to exercise. It will strengthen the right side of her heart and is not dangerous for her. Contact sports are out because of the blood thinners she'll be on but she could play soccer like her daddy. Maybe she'll hate sports like her mom and won't notice the inconvenience at all! HLHS babies are found to have a slightly lower than average IQ. Knowing this in advance we plan to have Hope in music and language studies to give her a little boost in the brain. We are praying she'll make the honour roll anyway and be spared from learning difficulties that will frustrate her.
Please continue to pray with us for Hope and for the rest of the pregnancy. It looks like she will carry to the end and continue to grow, for that we are thankful. Our prayers is for an on time delivery that does not need an induction, just like in the movies! We are hoping to be able to successfully deliver naturally, that also means my mom would be able to join us for the delivery and that is a special gift. We are praying that she will be strong at birth, that her lungs will tolerate the medication well and that her first surgery will be successful and that she'll recover easily from it. We are praying for peace about having to leave Sadie so often with others and not be able to love on her ourselves. We are blessed to have so many people that we trust to watch her, that is a gift. Most of all, we are praying that this little princess proves them all wrong and grows the left ventricle to normal size and begins pumping blood to her body herself.
Thank you for caring and for your support. Our journey continues and we will have many different struggles and appointments so we'll continue to keep you posted.
Tuesday, 22 November 2011
The Day Before...
Less than 24 hours until we meet with the specialist, have more tests done on the baby's heart and get more information than we'll know what to do with. Anyone who knows me well would tell you that I am extremely impatient. Reading Ephesians is always a struggle when I come to, "love is patient". By only the power of God I have not felt impatient waiting for this appointment at all. By the power of prayer I actually feel a lot of peace as we prepare for tomorrow morning. I can't help but laugh when I think of how many times I've prayed for patience, I believe God is going to give me some finally!
A second mom in Calgary came over this morning to keep me busy, play with Sadie and make me dinner! I sit here writing while Sadie naps, my apple pie for dessert bakes and my belly is full from a wonderful lunch that she also provided. Wow, how can God bless you with more than one fantastic mom? We truly are blessed by the people around us.
Last night we officially named our baby and after a gender confirmation tomorrow, will allow you to pray for her (or him) by name. We wanted Sadie's name to be a surprise but there are more miracles to announce with this second baby and her name doesn't seem like big news.
Thank you for continuing to pray for us, we'll be sure to update you at some point tomorrow after our appointment as well. We are surviving, God is a wonderful comfort to our family and has raised up some incredible people to spoil us and make us constantly wonder, "are we that nice?"
A second mom in Calgary came over this morning to keep me busy, play with Sadie and make me dinner! I sit here writing while Sadie naps, my apple pie for dessert bakes and my belly is full from a wonderful lunch that she also provided. Wow, how can God bless you with more than one fantastic mom? We truly are blessed by the people around us.
Last night we officially named our baby and after a gender confirmation tomorrow, will allow you to pray for her (or him) by name. We wanted Sadie's name to be a surprise but there are more miracles to announce with this second baby and her name doesn't seem like big news.
Thank you for continuing to pray for us, we'll be sure to update you at some point tomorrow after our appointment as well. We are surviving, God is a wonderful comfort to our family and has raised up some incredible people to spoil us and make us constantly wonder, "are we that nice?"
Monday, 21 November 2011
Sunday, 20 November 2011
Support from above and beyond
It has been 4 days since we received the news of our baby's broken heart. Reality has set in at this point and although we still have many questions, we have a general understanding that life will never be the same.
I don't know how to articulate this properly but, in a weird way, we feel blessed. Last night I sat and read some of "Crazy Love" by Francis Chan. Previously I found this book not to be very 'deep' and full of facts we've already heard. My entire perspective on life has now changed and reading of God's love was like hearing it for the first time. When I finished I sat and talked with Shawn, my heart full of so much thanks. All my life I have wanted more of God, more passion for him, more desire for him, and more discipline to seek him. I now have the privilege of being in a place of brokenness that requires me to not turn to Him at times, but to let Him carry me at all times. I've finally gotten what I've always wanted, full dependence on God. God can no longer be a part of my life but must utterly consume my life if we're going to survive this rough road.
Our friends and family have been amazing, this support is humbling to me and is also going to take some time to accept. When I log onto our blog and see followers I don't know, get emails from strangers or hear people I've never met are praying, I am overwhelmed to say the least. The things that used to matter are now so small in life. I find it difficult to make meals for my family, a task I previously enjoyed. I can't find the ambition to clean my floors and yet still find all the cheerios on my socks annoying. Perhaps that will come in time but right now I just want to be with people, sit and read.
Many people have asked us what they can do or shared their desire to help and their uncertainty of what to do. I like to do things myself and find it hard to accept help and especially to ask for it. I believe this is something that is going to need some serious work in my life! So I've decided to try and be honest, to make our lives more vulnerable and share our needs as they come up and force myself not to be ashamed of our need for help.
We need love. The best thing you can for us right now is love on us. To keep me busy during the day by going for coffee, hitting the grocery store, having play dates or whatever. My thoughts are overwhelming and I truly enjoy being busy right now. You can feel free to call but please do not be offended if we don't answer, at times I feel tired of saying the same things and can't seem to make myself pick up the phone. Your words of encouragement and promises of prayer are a great strength. Anyone that was around while I lived away from home will know that I love to write and receive letters...if you want to send mail I will open it with joy :).
We have been blessed by a couple of people dropping off meals. It is a blessing beyond words to reheat something and sit down and eat. Shawn really likes to eat good food and I feel guilty when I serve him a salami sandwich. It is a blessing as a wife to serve him a nice meal, bless him through it and to know that I didn't even make it! Tonight we have friends coming over with dinner to sit and eat with us, keep us busy and well fed. This is a huge blessing, we love to spend time with you and want you to come by, don't be afraid to make us cry.
Christmas is getting closer and it's hard to think about decorating. Sadie is getting bigger and we're planning to make a 'Big Girl' room for her. These are all things I would normally love and although I'll still enjoy doing them, I would love to do them with company. If this is the type of thing you enjoy, come and join me!
Most of all, please pray for us. Feel free to share our story with anyone you know that will pray. We are not keeping our story quiet to protect our vulnerability. We realize that the prayers of God's people is worth it and we choose to embrace the publicity of our suffering.
Thank you for your emails, your phone calls, your visits and your prayers. We love our friends and family and are so lucky to have such a great support system. We can only hope that you know how much we appreciate you and that no matter how consumed we are with our own situation, that we always take the time to be sure you know we care about your lives as well. We love you all.
I don't know how to articulate this properly but, in a weird way, we feel blessed. Last night I sat and read some of "Crazy Love" by Francis Chan. Previously I found this book not to be very 'deep' and full of facts we've already heard. My entire perspective on life has now changed and reading of God's love was like hearing it for the first time. When I finished I sat and talked with Shawn, my heart full of so much thanks. All my life I have wanted more of God, more passion for him, more desire for him, and more discipline to seek him. I now have the privilege of being in a place of brokenness that requires me to not turn to Him at times, but to let Him carry me at all times. I've finally gotten what I've always wanted, full dependence on God. God can no longer be a part of my life but must utterly consume my life if we're going to survive this rough road.
Our friends and family have been amazing, this support is humbling to me and is also going to take some time to accept. When I log onto our blog and see followers I don't know, get emails from strangers or hear people I've never met are praying, I am overwhelmed to say the least. The things that used to matter are now so small in life. I find it difficult to make meals for my family, a task I previously enjoyed. I can't find the ambition to clean my floors and yet still find all the cheerios on my socks annoying. Perhaps that will come in time but right now I just want to be with people, sit and read.
Many people have asked us what they can do or shared their desire to help and their uncertainty of what to do. I like to do things myself and find it hard to accept help and especially to ask for it. I believe this is something that is going to need some serious work in my life! So I've decided to try and be honest, to make our lives more vulnerable and share our needs as they come up and force myself not to be ashamed of our need for help.
We need love. The best thing you can for us right now is love on us. To keep me busy during the day by going for coffee, hitting the grocery store, having play dates or whatever. My thoughts are overwhelming and I truly enjoy being busy right now. You can feel free to call but please do not be offended if we don't answer, at times I feel tired of saying the same things and can't seem to make myself pick up the phone. Your words of encouragement and promises of prayer are a great strength. Anyone that was around while I lived away from home will know that I love to write and receive letters...if you want to send mail I will open it with joy :).
We have been blessed by a couple of people dropping off meals. It is a blessing beyond words to reheat something and sit down and eat. Shawn really likes to eat good food and I feel guilty when I serve him a salami sandwich. It is a blessing as a wife to serve him a nice meal, bless him through it and to know that I didn't even make it! Tonight we have friends coming over with dinner to sit and eat with us, keep us busy and well fed. This is a huge blessing, we love to spend time with you and want you to come by, don't be afraid to make us cry.
Christmas is getting closer and it's hard to think about decorating. Sadie is getting bigger and we're planning to make a 'Big Girl' room for her. These are all things I would normally love and although I'll still enjoy doing them, I would love to do them with company. If this is the type of thing you enjoy, come and join me!
Most of all, please pray for us. Feel free to share our story with anyone you know that will pray. We are not keeping our story quiet to protect our vulnerability. We realize that the prayers of God's people is worth it and we choose to embrace the publicity of our suffering.
Thank you for your emails, your phone calls, your visits and your prayers. We love our friends and family and are so lucky to have such a great support system. We can only hope that you know how much we appreciate you and that no matter how consumed we are with our own situation, that we always take the time to be sure you know we care about your lives as well. We love you all.
Friday, 18 November 2011
Our Story Begins...
On November 16th Shawn, Sadie and I headed to the ultrasound clinic for our 18 week ultrasound. We talked about whether it would be a boy or a girl and threw around some name ideas. We agreed to have a medical student attend the ultrasound and things got underway. The technician began looking at the babies profile, limbs and brain. She continually described things to the student and would show her why our baby was healthy but what the signs of a problem would look like.
The baby was in a tough position so it took a bit of time for the technician to make a guess, she's guessing it's a girl! A little sister for Sadie to adore. Sadie began to get a little antsy so Shawn took her out to the waiting room to play. The technician began to look at the baby's heart and seemed to get quiet. She had me roll onto my side in an attempt to get a better picture. She continually looked at the heart, no longer speaking to the student or myself. I saw her type a question mark onto the screen and something about the left side of the heart. It was all in short form and I wasn't sure what it meant but was certain a question mark was a bad sign. I knew the ultrasound shouldn't be taking this long and began watching the clock on the screen. When we passed the hour mark I began to really worry and wanted Shawn to come back.
The technician made a joke about me needing to pee and handed me some kleenex to wipe off my belly. She told me she was going to have the doctor to come speak with us and to wait in the room. I ran to the bathroom and then quickly out to the waiting room. I asked Shawn to come back in with Sadie and told him I thought there was a problem. As we began to wait I told him she was looking at the heart and it was taking too long. He tried to reassure me and told me not to jump to conclusions. Sadie was going crazy, we hadn't expected such a long appointment and were running out of ways to entertain her.
After what seemed like a long time, a nurse came in and brought some cookies and a sticker for Sadie. She told us we'd be more comfortable in a room down the hall. As we walked down the hall to the 'Consult Room' I knew things were about to get worse. We sat down and I told Shawn again, something was wrong. We waited for a long time for the doctor to arrive.
The doctor finally arrived, with the medical student. She looked like she'd lost a bet and was about to enter her worst nightmare. The doctor sat down and talked to Sadie for a second and then told us he had bad news, it was very serious and going to be tough. He started out by drawing a heart and apologizing for his artistic abilities. He then scratched out the entire left side of the heart and proceeded to tell us that our baby was missing the left side of her heart. He told us that the heart would not grow or develop any further and this was not going to change. He then began with our options...
1. Terminate the pregnancy and make the most 'humane' decision for the baby's sake.
2. Carry the baby to full term, deliver here in Calgary and put the baby in palliative care until, "nature took its course". He told us it would happen quickly and the baby would not suffer.
3. Carry the baby to full term and deliver in Edmonton at the heart centre. He told us the baby would go for immediate open heart surgery and would continue to have another 2 surgeries before her 5th birthday. He warned us to think about the child we already had, the time we would need to spend away from home and the emotional strain on our family.
He apologized for ruining our lives, told us we had some tough decisions to make, and that a nurse would be following him in with our first appointment at the heart specialist for next week. Tears were already streaming down my face but I had been staying composed. As the doctor closed the door I began to weep and stood up to fall into Shawn's arms. We had nothing to say as we waited for the nurse to arrive.
The nurse apologized for our pain and handed us the details for our first appointment. We picked up our things and started the long walk out of the office. As we passed through the waiting room and I saw all the excited moms and dads waiting for the first sight of their babies, I felt jealous.
Here begins a long journey for our family. We have chosen option 3 without a thought and are awaiting our first appointment on November 23rd. We feel overwhelmed by the people that need to be updated and decided a blog was our best option. As we find out details or need to vent, we'll be here.
Right now we are not doing well and have had many hours of tears and struggles. We are thankful for our family and friends, their support has been amazing. We are fully relying on the Lord for the strength we need each day and believe that he is going to carry us through. We're not sure why he's chosen us and feel like we're not ready but are willing.
We are asking the world to pray. Will you join us on our knees as we ask the Lord to heal our baby's broken heart? We are asking for a whole heart and the faith to believe it can happen. We need the strength to trust in God's plan whether he heals her heart or has us go through the first surgery. We need wisdom as we research the best place for the surgery and the logistics to make it happen. Our God is all powerful and we choose to believe in His power.
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