I am coming to a place of realizing that I may not have long to 'cling' to my Hope after she's born. In response I am trying to work at holding onto the hope that I have in Jesus Christ to comfort me through that difficult time and find strength in Him. Shawn and I watched a tv show that features a family giving birth to an HLHS baby in the States. I'm including the link if you're interested in watching, it gives you a better idea of what Hope's delivery and first few hours could look like.
http://www.videobb.com/watch_video.php?v=eAnmNtrFqdBX
Hopefully that works for you all.
Today I met with my obstetrician and then had an echo done on Hope's heart. It was a long day with a lot of doctors! The OB appointment was pretty fast. I had Sadie with me and she was entertaining everyone in the office. They listened to the baby, charted my weight and the growth of my belly. It was nothing too exciting or new. In the afternoon I went for the echo and left Sadie with a babysitter - it's a good thing too, the appointment was 3 hours long and involved a lot of waiting. I was greeted with another $16 parking bill at the end of the visit, if it wasn't -30 I would I have considered walking a bit to save some money. In this weather, I would have paid double to be close to the doors!!
The echo is about an hour in length and involves checking the basics of the baby; head size, stomach, length of legs and weight. Hope is measuring perfectly for 28 weeks and continues to grow on track, she is currently weighing in at 2 pounds 7 ounces and they seemed pleased with this. After measuring different parts of the baby they began to focus on the heart completely. They usually spend over 40 minutes measuring every piece, listening and looking at blood flow and making notes of any changes. This process has become very painful for me with my SPD. During much of the echo I was positioned on my side, which was extremely uncomfortable, but allowed them to get the best pictures of Hope. I am not looking forward to the next one (3 weeks from now in Edmonton) and would love your prayer in this matter.
After the echo was completed, I began the waiting game. It takes quite a while for the cardiologist to examine the results, consult with the cardiologists in Edmonton and come back to speak with me. During this time I read my book, wrote in my journal and worked on my homework for a Beth Moore Bible study I'm in. It was a great time for me and I didn't mind the wait, this time I had remembered to pack snacks too!
The neonatologist saw me first and confirmed that Hope's growth is excellent and they couldn't be happier with it. Praise the Lord for that! After being seen in Edmonton, we'll begin having ultrasounds every 2 weeks to make sure this growth continues throughout my last trimester.
The cardiologist came in at the end and said everything was still looking good and they felt positive about what they were seeing with Hope. She said that Hope is a very 'general' candidate for surgery, meaning that she's pretty textbook in her HLHS. She commented that the right atrium had good function and the right ventricle looked normal and thin, which is apparently a good thing. She said the lung arteries were growing well and that would help in her breathing after birth.
She informed me that the reason it had taken so long was that they were looking at the pulmonary veins that were going into the atrial defect (hole), to be sure that the blood flow was active enough. She said that there was the appearance that it might narrow but that it appeared the blood was still flowing currently. Going forward, this is something they will keep a close eye on but will not get a good picture of it's exact condition until Hope is born. Seeing the heart through my stomach and Hope's is not the best picture. They will do an echo on Hope as soon as she is stable after birth and get the best picture of her heart at that time.
So, we would like everyone to pray that this hole would NOT narrow and that the blood would continue to flow actively through this area. After Hope is born, the medication they put her on will force the blood to continue flowing as it has in utero and not switch to a flow that includes the left side of the heart. If there is a narrowing, it will cause this to be problematic and could result in more drastic measures needing to be taken. Let's pray that the Lord would keep the hole open and that no other intervention will be required after birth.
In the meantime, we will continuing trusting the Lord with Hope's heart and pray that we get more positive news after the echo in Edmonton.
Wednesday, 18 January 2012
Sunday, 15 January 2012
Doctor-a-thon
This week I have 5 doctor appointments in 3 days, a real overload of medical care. It involves a lot of coordinating babysitters for Sadie and we are truly blessed to have so many willing friends. This morning in church the pastor was talking about dreams we have for the future. He mentioned the dream of our children having children and I cried as I thought of Hope and having to tell her that she won't be able to give birth herself. This evening, Shawn and I sat down to watch a documentary he'd recorded on medical stories that involve children. Just our luck, the show was about a baby with a heart defect that went in for surgery soon after birth. In one scene, they show the mother holding her son for the first time, 3 days after birth. This was really hard to see and a realistic fear that we both hold each day. We couldn't seem to turn it off as we wanted to see what would happen. It got to the part where he needed his second surgery and said, 'to be continued'. Of course that would happen! We have some days of great strength and other days that are full of tears. Overall, we're making it through and getting closer to our move to Edmonton.
I spent Saturday in the kitchen with some girlfriends, we made meals to pack the freezer and have some things ready for after Hope arrives and life is busy. I have 41 new meals in the freezer and will have to work to avoid using them all before we head to Edmonton in 10 weeks. The more we have ready, the easier the transition with Hope should be.
Wednesday this week we'll have our most important appointments - the obstetrician in the morning and an echo of Hope's heart in the afternoon. Shawn and I have decided that I'll attend these appointments alone this week. It's not our most ideal option, but we realize that Shawn will need to take a lot of time off work and with so many appointments, and it's hard for him to make it to all of them. I'll ask the cardiologist to call him at work and have him come to the office if she's going to give me any further bad news, to be sure I won't be alone for that. Please pray for strength and peace for both of us as we do this. We'll update you all as we receive any news from the doctors this week.
I spent Saturday in the kitchen with some girlfriends, we made meals to pack the freezer and have some things ready for after Hope arrives and life is busy. I have 41 new meals in the freezer and will have to work to avoid using them all before we head to Edmonton in 10 weeks. The more we have ready, the easier the transition with Hope should be.
Wednesday this week we'll have our most important appointments - the obstetrician in the morning and an echo of Hope's heart in the afternoon. Shawn and I have decided that I'll attend these appointments alone this week. It's not our most ideal option, but we realize that Shawn will need to take a lot of time off work and with so many appointments, and it's hard for him to make it to all of them. I'll ask the cardiologist to call him at work and have him come to the office if she's going to give me any further bad news, to be sure I won't be alone for that. Please pray for strength and peace for both of us as we do this. We'll update you all as we receive any news from the doctors this week.
Thursday, 12 January 2012
Update from Ryan and Christen
Here is a personal note from Ryan and Christen:
"In going into our long anticipated appointment with the pediatric cardiologist this morning, we had no idea what to expect. God surpassed any expectations we had of our 'best-case' scenarios. After reading our referral letter with the given diagnosis and looking at the results from Ziah's initial echo, the specialist was concerned and decided to do an echo of his own. After checking and rechecking, he concluded beyond a shadow of doubt that "Ziah's heart is functioning completely normal. He is fine!". At these words, I cannot express the relief (and surprise) that washed over Ryan and me. It turns out that "Cor Triatriatum Dexter" was a misdiagnosis. He does have a membrane that has grown across his left atria but it is not located where they originally said, and where it is is completely inconsequential to the functioning of his heart. As far as the diagnosis of an ASD, the cardiologist said that is not a correct diagnosis either, as there is now a flap that overlaps the hole in Ziah's heart that the specialist is confident will seal itself over time and is also inconsequential. The only thing that this means for Ziah's future is that he should never scuba dive. I laughed when he said this, considering how trivial that is compared to what could have been.
We are so grateful for all of your prayers and messages of encouragement. We believe that God heard your prayers, whether it truly was 2 different cases of misdiagnoses of heart defects, or whether Ziah was healed. we have seen how God has used this to glorify Himself and bring our family closer. For that, we are grateful. Thank you, we have been encouraged to pray even more for Hope as we have just seen so clearly the power of prayer!" - Ryan and Christen
Isn't that great news? We're thrilled as a family and wanted to share the news right away so you could all praise the Lord as well!
"In going into our long anticipated appointment with the pediatric cardiologist this morning, we had no idea what to expect. God surpassed any expectations we had of our 'best-case' scenarios. After reading our referral letter with the given diagnosis and looking at the results from Ziah's initial echo, the specialist was concerned and decided to do an echo of his own. After checking and rechecking, he concluded beyond a shadow of doubt that "Ziah's heart is functioning completely normal. He is fine!". At these words, I cannot express the relief (and surprise) that washed over Ryan and me. It turns out that "Cor Triatriatum Dexter" was a misdiagnosis. He does have a membrane that has grown across his left atria but it is not located where they originally said, and where it is is completely inconsequential to the functioning of his heart. As far as the diagnosis of an ASD, the cardiologist said that is not a correct diagnosis either, as there is now a flap that overlaps the hole in Ziah's heart that the specialist is confident will seal itself over time and is also inconsequential. The only thing that this means for Ziah's future is that he should never scuba dive. I laughed when he said this, considering how trivial that is compared to what could have been.
We are so grateful for all of your prayers and messages of encouragement. We believe that God heard your prayers, whether it truly was 2 different cases of misdiagnoses of heart defects, or whether Ziah was healed. we have seen how God has used this to glorify Himself and bring our family closer. For that, we are grateful. Thank you, we have been encouraged to pray even more for Hope as we have just seen so clearly the power of prayer!" - Ryan and Christen
Isn't that great news? We're thrilled as a family and wanted to share the news right away so you could all praise the Lord as well!
Tuesday, 10 January 2012
Sadie's all clear!
We were thrilled and relieved to receive a normal echo report for Sadie. The cardiologist came in immediately after the procedure to inform me that everything was perfect. Sadie was a real star and was very patient while they ran the test. It took longer than normal because of her croup, they had trouble seeing her heart properly and needed to take some extra pictures. This delay was unsettling to me, I started to cry as I walked out of the hospital. I fully believe that God does not give us more than we can handle and he knows, I can't handle two children with heart problems. The relief was overwhelming and difficult to contain.
It was an interesting experience in the cardiology unit of the children's hospital. Everyone was very kind and warm, they greeted me like an old friend and were sure to introduce themselves. Many of them reminded me that I'll get to know them well after Hope returns to Calgary. This will become a second home for us as we go to multiple cardiology appointments with Hope. I felt as though I was being welcomed into a club as a new member, sadly it was a club I didn't want a membership to.
We are thankful for the wonderful care we receive and look forward to working with such pleasant staff in the future. Thank you for your prayers, we truly praise God for Sadie's positive report.
It was an interesting experience in the cardiology unit of the children's hospital. Everyone was very kind and warm, they greeted me like an old friend and were sure to introduce themselves. Many of them reminded me that I'll get to know them well after Hope returns to Calgary. This will become a second home for us as we go to multiple cardiology appointments with Hope. I felt as though I was being welcomed into a club as a new member, sadly it was a club I didn't want a membership to.
We are thankful for the wonderful care we receive and look forward to working with such pleasant staff in the future. Thank you for your prayers, we truly praise God for Sadie's positive report.
Sadie the Supergirl!
Please pray for Sadie and I this morning as we head to the children's hospital. Sadie is going to have her heart echo done and we're hoping for normal, clear results that don't show any abnormalities. Shawn and I have both had scans done in the last 10 years and received normal results, this is a relief for sure!
Please pray that Sadie won't be afraid or freak out while the test is being done. She is usually a supergirl when it comes to doctors. She likes to watch what they are doing and sit very still, this works out wonderfully when they are listening to her chest or looking in her ears. I'm hoping today will have the same results! The cardiologist said she would call me at home with the results, so I don't have to go back in to receive them, I'll let you all know as soon as we find out.
Thank you!
Sunday, 8 January 2012
Baby girls galore!
People have always told me that I'm very blunt, honest and open. Sometimes this has been said as an encouragement and other times as a rebuke. I have sat over the last couple of months and often wondered how much is appropriate to share or not to share in our journey. I haven't come up with an answer, just a desire to be honest, to make Hope's life a testimony for the Lord and to vent my feelings so I can move forward each day. Today as I was reading I came across this quote by Elie Wiesel, "Whoever survives a test, whatever it may be, must tell the story. That is his duty." This reminded me once again that God uses each struggle we have, in others' lives. With that in mind I share my latest battle, the battle of the baby girl...
I want everyone to first understand that I never look at another child and wish they would take a defective heart and give their healthy heart to Hope. I am at peace with the fact that God chose Hope's heart for her, I battle instead with his choice to make me her mother! Lately a lot of people have gotten pregnant, had babies, written books or made movies that involve baby girls.
A few of our friends have had beautiful, healthy baby girls in the last month. When I see these little girls I naturally think of Hope. When I look at how small and delicate they are, my heart breaks at the thought of someone so fragile being taken into surgery. When I see how small they are I mourn the fact that Hope won't be home until she's much older. When you have a preemie they are in the hospital for a long time, but when they come home they are still the size of a regular newborn or smaller. I sometimes picture myself bringing home a toddler to meet our friends for the first time. I know this is hopefully a stretch of the imagination but I'm sure you understand what I'm saying.
Last night I went to see the new Twilight movie. Feel free to mock me in your head, a good love story is beautiful, even if it involves vampires. In the movie the main character gives birth to a baby, a baby girl. I can't seem to watch, hear or read about the birth of a baby girl without getting sad, overwhelmed and contemplative about the future.
This flood of baby girls has pushed me back into reality and constantly reminds me of what is shortly ahead. I notice a great change in my personality as a result, I'm not as free spirited or funny as I used to be. Life is all more serious to me and I have to force myself to have fun sometimes. I need to work at seeing baby girls as a reminder of God's wonderful creation and not as a reminder of what I won't have, another healthy baby girl like Sadie. Each day I ask the Lord to show me true joy, maybe I've lost the fake things that used to make me laugh and I'm finally seeing true joy?
Yesterday Shawn was sick with a cold and Sadie was a bit fussy from the impending eye teeth. I'm overtired from her being sick last week and not having Shawn's help this weekend to allow me to recover. As I drove Sadie to Wal-mart, so Shawn could have a nap in a quiet house, she screamed the entire way because I had put water instead of milk in her cup. At the 1/2 way point in the journey, I started to scream back at her. I told her to get over it, stop crying, give me a break, be patient and anything else I could think of. When I lay in bed last night all I could think was, I'm not patient enough to be the parent of a child with special needs of any kind. I can't handle a regular breakdown of a healthy child, how can I be an amazing Mom to Hope and show her patience and loving kindness?
Shawn refuses to tell me lies about my own weaknesses, he knows that I am extremely impatient and probably fears for us all as well. As I cried myself to sleep, he simply held me and reminded me that he loves me the way I am, impatience and all. Then this morning in church I sang out from my soul, "you're all I need, you're all I've ever wanted" and I realized again, I can't do this. For that very reason God chose me to be Hope's mom, because I'm not able. Every step of parenting her will require the strength that only God can give. Every moment left in this pregnancy and every precious time her heart beats will all be through the Lord. So I'm publicly over sharing, that I am not capable of this, I'm not strong enough and I'm scared to death. My God is big enough, strong enough and loving enough to get me through each day from here on.
I want everyone to first understand that I never look at another child and wish they would take a defective heart and give their healthy heart to Hope. I am at peace with the fact that God chose Hope's heart for her, I battle instead with his choice to make me her mother! Lately a lot of people have gotten pregnant, had babies, written books or made movies that involve baby girls.
A few of our friends have had beautiful, healthy baby girls in the last month. When I see these little girls I naturally think of Hope. When I look at how small and delicate they are, my heart breaks at the thought of someone so fragile being taken into surgery. When I see how small they are I mourn the fact that Hope won't be home until she's much older. When you have a preemie they are in the hospital for a long time, but when they come home they are still the size of a regular newborn or smaller. I sometimes picture myself bringing home a toddler to meet our friends for the first time. I know this is hopefully a stretch of the imagination but I'm sure you understand what I'm saying.
Last night I went to see the new Twilight movie. Feel free to mock me in your head, a good love story is beautiful, even if it involves vampires. In the movie the main character gives birth to a baby, a baby girl. I can't seem to watch, hear or read about the birth of a baby girl without getting sad, overwhelmed and contemplative about the future.
This flood of baby girls has pushed me back into reality and constantly reminds me of what is shortly ahead. I notice a great change in my personality as a result, I'm not as free spirited or funny as I used to be. Life is all more serious to me and I have to force myself to have fun sometimes. I need to work at seeing baby girls as a reminder of God's wonderful creation and not as a reminder of what I won't have, another healthy baby girl like Sadie. Each day I ask the Lord to show me true joy, maybe I've lost the fake things that used to make me laugh and I'm finally seeing true joy?
Yesterday Shawn was sick with a cold and Sadie was a bit fussy from the impending eye teeth. I'm overtired from her being sick last week and not having Shawn's help this weekend to allow me to recover. As I drove Sadie to Wal-mart, so Shawn could have a nap in a quiet house, she screamed the entire way because I had put water instead of milk in her cup. At the 1/2 way point in the journey, I started to scream back at her. I told her to get over it, stop crying, give me a break, be patient and anything else I could think of. When I lay in bed last night all I could think was, I'm not patient enough to be the parent of a child with special needs of any kind. I can't handle a regular breakdown of a healthy child, how can I be an amazing Mom to Hope and show her patience and loving kindness?
Shawn refuses to tell me lies about my own weaknesses, he knows that I am extremely impatient and probably fears for us all as well. As I cried myself to sleep, he simply held me and reminded me that he loves me the way I am, impatience and all. Then this morning in church I sang out from my soul, "you're all I need, you're all I've ever wanted" and I realized again, I can't do this. For that very reason God chose me to be Hope's mom, because I'm not able. Every step of parenting her will require the strength that only God can give. Every moment left in this pregnancy and every precious time her heart beats will all be through the Lord. So I'm publicly over sharing, that I am not capable of this, I'm not strong enough and I'm scared to death. My God is big enough, strong enough and loving enough to get me through each day from here on.
Thursday, 5 January 2012
Almost too close...
2 months ago when Hope was diagnosed I thought April 13th would never come. Today I couldn't stop thinking about how close it was, too close. Hope is completely healthy and safe while in the womb and that gives me a lot of peace, coming into the world is truly a death sentence for her without surgery.
Sadie has been sick over the last week and is finally feeling a lot better. As we finish off croup and an ear infection, Sadie is now getting all 4 eye teeth at once and has some trouble falling asleep at night. Tonight as I sat in the chair rocking her back to sleep I fell in love once again. I wasn't in a hurry to put her back to bed, I could have held her until morning. She will truly sacrifice so much having a sister that needs so much care. This experience has already changed the way I parent Sadie and I see the changes in Shawn as well. When Sadie asks for a bath, it doesn't seem like a drag, the park seems like a fun idea and going out during the day to make her happy is a joy. When she screams for no reason and drives me crazy, it doesn't ruin my day, only the moment and I seem to forget about it quickly.
Today I got a letter from the children's hospital in Edmonton confirming our visit in February, I'm sure the time will go quickly before we're there and the short road to Hope's arrival will be right in front of us. We realize now that our lives, our marriage and our future will never be the same. We have finally come to a place where we truly understand that we NEED God and not just choose him.
I'm in the process of planning a long weekend away for Shawn and I in February. Sadie will be staying with her grandparents and then some friends of ours. We realize that this may be our last 'getaway' for a long time. It's a sad thought as we know the importance of taking time away to keep our marriage healthy and strong. Please pray for protection upon our marriage as we enter a season that won't easily allow for us to focus on one another without distraction. We want this experience to make us closer than we ever imagined and not break us down, we pray that the enemy doesn't try to attack us while we're down.
Thank you for caring about my family and continuing to read our updates.
Sadie has been sick over the last week and is finally feeling a lot better. As we finish off croup and an ear infection, Sadie is now getting all 4 eye teeth at once and has some trouble falling asleep at night. Tonight as I sat in the chair rocking her back to sleep I fell in love once again. I wasn't in a hurry to put her back to bed, I could have held her until morning. She will truly sacrifice so much having a sister that needs so much care. This experience has already changed the way I parent Sadie and I see the changes in Shawn as well. When Sadie asks for a bath, it doesn't seem like a drag, the park seems like a fun idea and going out during the day to make her happy is a joy. When she screams for no reason and drives me crazy, it doesn't ruin my day, only the moment and I seem to forget about it quickly.
Today I got a letter from the children's hospital in Edmonton confirming our visit in February, I'm sure the time will go quickly before we're there and the short road to Hope's arrival will be right in front of us. We realize now that our lives, our marriage and our future will never be the same. We have finally come to a place where we truly understand that we NEED God and not just choose him.
I'm in the process of planning a long weekend away for Shawn and I in February. Sadie will be staying with her grandparents and then some friends of ours. We realize that this may be our last 'getaway' for a long time. It's a sad thought as we know the importance of taking time away to keep our marriage healthy and strong. Please pray for protection upon our marriage as we enter a season that won't easily allow for us to focus on one another without distraction. We want this experience to make us closer than we ever imagined and not break us down, we pray that the enemy doesn't try to attack us while we're down.
Thank you for caring about my family and continuing to read our updates.
 |
| It feels like just yesterday that we welcomed Sadie into our family and entered the world of parenthood. Today I spent time looking back at those early days and longing for something so easy with Hope. |
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