Tomorrow at 9:30am Ontario time, my mom will be sharing on television about Hope's story. It's on CTS here, not sure what channel that will be for each of you, but it's 51 at our house. I believe it will air at 9:30am here as well, but I'm recording all morning just in case. I'm looking forward to watching it when I get home from the hospital. Please join me in praying that her story not only draws people closer to the Lord and gets them on their knees, but that it raises awareness for organ donation and that it floods the gates of Heaven with prayers for a heart for Hope.
Today was a day I have been dreading. It was the first day of training for the run with Heart Beats in October. The last time I ran, was for the run last October! Seven months later, I've begun to run again to work towards my goal of running the entire 5 km without needing to walk. As we get closer, I'll post a link for anyone that would like to sponsor a runner on our team. If you're interested in running, let me know and I can send you the info to sign up for the 5 or 10 km run or the walks. My faithful running buddy arrived this morning and I dragged myself outside. It was honestly not as horrible as I had anticipated. The last 10 minutes were much harder than the first, but I have survived and I'm truly looking forward to the exercise and the time it gives me to chat with friends as we run. Last year we ran as team Hope Holly Lincoln. We plan to have the same name this year and run for the 3 babies that started this journey together. I was thinking our team t-shirts should say, "Running for broken hearts made whole" or something to that effect. We know that Lincoln's broken heart was made whole in Heaven. Holly's 1/2 heart was made whole when she received her transplant last August, and we await that day that Hope's 1/2 heart will become a whole. We pray that is here on earth, but know that Jesus will give her a perfect heart in Heaven, even if not here on earth.
I had an amazing afternoon cuddling Hope and looking into her beautiful face. I was struck by how amazing our God is today. Hope was created with only 1/2 her heart, but there were also people created with incredible brains that found ways to surgically keep a child with 1/2 a heart alive. That absolutely amazed me today. I looked down at my precious girl and imagined a heart 1/2 the size it's supposed to be and yet working overtime to keep her organs running and her body alive. It's simply a miracle and absolutely incredible to witness. Every heart beat is a miracle and I choose to celebrate each one.
Hope was getting a bit warmer as the day progressed and I'm worried she may develop a fever overnight. Shawn noticed that her heart rate was a bit higher as we headed out for the day and we are hoping it's nothing. Please join us in praying against infection. Our cardiologist is wonderful and told me this morning that he overruled the decision to lower Hope's heart meds at this point. They may consider it in a few days, but he felt she still needed the higher dose and I couldn't agree more.
My mom arrives tomorrow night, she flies out after her interview. Over the next week my entire family will slowly arrive in Calgary. We had hoped to go on a family vacation this year, it's the only time we're all together. With Hope's serious condition, it was clearly not an option and they've all chosen to come here so we can be together. I keep telling Shawn that once they all arrive, both our entire families will be in the same city. Could there be a more perfect time to receive the call that a heart was found for Hope? Last night I had a dream that the call came when our house was full of people. I could only make out the face of one friend, but perhaps the rest were family. I was amazed that as I grabbed my things to rush to Edmonton in my dream, I felt total and complete peace. Lord, give us your peace until you give Hope a heart that is no longer broken.
Monday, 20 May 2013
Sunday, 19 May 2013
Previously Loved?
This weekend has truly been a weekend in many ways. With the help of others, we've been able to avoid crazy early mornings, spend quality time with Sadie, go to church this morning and run errands with the rest of the world on the weekend. We accomplished a fair amount and feel slightly less burnt out than we have been feeling.
Hope is still tolerating the pure breast milk and has not thrown up for probably 48 hours. As a result, the doctors have decided to try lowering her heart meds over the next couple of days to get her back to 5 mg instead of 7.5 mg. I personally feel this is a waste of time and that we'll need to go back up on the meds as soon as they try to concentrate her feeds. The meds are not good for Hope long term, so I'm trying to be optimistic and believe that this is possible. We all know that I'm fairly sure it will fail and she'll be back up to her current dose by next weekend. Please pray that I'm wrong.
Our house is starting to feel more like our home and Sadie's room is finally dark enough to keep her sleeping in the mornings. Things are finding their new places around the house and all of the boxes have officially been unpacked. We lose possession of our old house on Friday and need to figure out a way to remove a few of the things left there before then.
I was sitting in our living room this afternoon looking around at all the "stuff" we have in life. It's amazing how when you want your child to have life, nothing else seems that great. I still think it looks better when we have curtains up, or after the couch arrived, and I certainly notice when the boxes are off the floor. It's more that as I sit in the room that I worked to create, I realize that I'd give up everything and anything to have Hope in my life. I would give my house, our car and every penny we have in the bank to the donor family if that's what it took. In a lot of ways it's more difficult to wait for the Lord's provision. Yes, he is going to bring us a heart without taking everything we have, but he's going to do that in HIS timing and not mine.
Hope has been more cuddly lately and is now willing to sleep in your arms as you hold her. This is something I deeply enjoy, but also worry about. She appears weaker and more fragile to me. Perhaps that is her tiny body. I long for the day that she crawls around our home and gets into everything she shouldn't. I look forward to the frustration of her running around when I want her to sit still. We just want our girl to receive a new heart and get stronger.
I often struggle with the term 'new heart' as the heart is not new. I feel it would be more fitting to call it; 'previously loved' or 'gently used'. The only new heart you have is the one you are born with or the one you receive after accepting Jesus as your Saviour. I also feel like saying, 'new heart' takes away from the donor family who 'used' that heart before Hope. One day it will come to me and I'll find the term I'm looking for to express how I see a heart that is gifted to our girl. We continue to pray that a family is able to make that most difficult choice and sacrifice to save our little girl's life.
Hope is still tolerating the pure breast milk and has not thrown up for probably 48 hours. As a result, the doctors have decided to try lowering her heart meds over the next couple of days to get her back to 5 mg instead of 7.5 mg. I personally feel this is a waste of time and that we'll need to go back up on the meds as soon as they try to concentrate her feeds. The meds are not good for Hope long term, so I'm trying to be optimistic and believe that this is possible. We all know that I'm fairly sure it will fail and she'll be back up to her current dose by next weekend. Please pray that I'm wrong.
Our house is starting to feel more like our home and Sadie's room is finally dark enough to keep her sleeping in the mornings. Things are finding their new places around the house and all of the boxes have officially been unpacked. We lose possession of our old house on Friday and need to figure out a way to remove a few of the things left there before then.
I was sitting in our living room this afternoon looking around at all the "stuff" we have in life. It's amazing how when you want your child to have life, nothing else seems that great. I still think it looks better when we have curtains up, or after the couch arrived, and I certainly notice when the boxes are off the floor. It's more that as I sit in the room that I worked to create, I realize that I'd give up everything and anything to have Hope in my life. I would give my house, our car and every penny we have in the bank to the donor family if that's what it took. In a lot of ways it's more difficult to wait for the Lord's provision. Yes, he is going to bring us a heart without taking everything we have, but he's going to do that in HIS timing and not mine.
Hope has been more cuddly lately and is now willing to sleep in your arms as you hold her. This is something I deeply enjoy, but also worry about. She appears weaker and more fragile to me. Perhaps that is her tiny body. I long for the day that she crawls around our home and gets into everything she shouldn't. I look forward to the frustration of her running around when I want her to sit still. We just want our girl to receive a new heart and get stronger.
I often struggle with the term 'new heart' as the heart is not new. I feel it would be more fitting to call it; 'previously loved' or 'gently used'. The only new heart you have is the one you are born with or the one you receive after accepting Jesus as your Saviour. I also feel like saying, 'new heart' takes away from the donor family who 'used' that heart before Hope. One day it will come to me and I'll find the term I'm looking for to express how I see a heart that is gifted to our girl. We continue to pray that a family is able to make that most difficult choice and sacrifice to save our little girl's life.
Friday, 17 May 2013
Wedding Words
There are benefits to being overwhelmed. I am extremely productive once I hit complete burn out. In an effort to stop thinking about Hope and the wait for a heart, I do everything and anything else. Sometimes that simply involves watching Shawn do the things I need done around the house. Tonight we were able to get a few of the curtains hung and a few more things on the walls as well. That always feels good and relieves some of the underlying stress. I could have continued watching him work all night long, but eventually he told me he was done for the night.
Today Hope continued to throw up, but was stable enough to stay in Calgary. They've decided that although Hope is walking a thin line, they'll try to work out some of the issues this weekend and see if we can stay in Calgary a little longer. Hope is now on 7.5 mg of her heart meds, the max dose is 20. With the vomiting continuing, they'll likely need to go up again but we do not want to get anywhere close to 20 until we know a heart is around the corner because there's no where to go from there.
It was nice to spend the night at home as a family tonight. Sadie was happy to have us both here and even sat down and watched a bit of our wedding video with us. It was the first time we've watched it since we were married 5 years ago. It was a good reminder to hear my brother's words to us at the wedding (he married us). At one point he said, "you need to be ready for difficult times and trials when they come, and they will come." Thank you Ryan, they did come and your words were a blessing the second time around too.
Hope is on pure breast milk now and is certainly not getting enough calories. Please pray we can find a solution that will work here in Calgary and do not need to head to Edmonton just yet. We are praying that our next drive to Edmonton is for a new heart.
Today Hope continued to throw up, but was stable enough to stay in Calgary. They've decided that although Hope is walking a thin line, they'll try to work out some of the issues this weekend and see if we can stay in Calgary a little longer. Hope is now on 7.5 mg of her heart meds, the max dose is 20. With the vomiting continuing, they'll likely need to go up again but we do not want to get anywhere close to 20 until we know a heart is around the corner because there's no where to go from there.
It was nice to spend the night at home as a family tonight. Sadie was happy to have us both here and even sat down and watched a bit of our wedding video with us. It was the first time we've watched it since we were married 5 years ago. It was a good reminder to hear my brother's words to us at the wedding (he married us). At one point he said, "you need to be ready for difficult times and trials when they come, and they will come." Thank you Ryan, they did come and your words were a blessing the second time around too.
Hope is on pure breast milk now and is certainly not getting enough calories. Please pray we can find a solution that will work here in Calgary and do not need to head to Edmonton just yet. We are praying that our next drive to Edmonton is for a new heart.
Thursday, 16 May 2013
Extreme Highs and Lows
The last 24 hours has been one of the most intense roller coaster of emotions we've experienced yet. I am typing this as quickly as possible as my migraine is not enjoying the computer screen. There is simply too much going on to not update and have you all praying more specifically.
It started early this morning just after midnight. Shawn and I were asleep in bed, had not been asleep for long but had finally managed to fall asleep. Our home phone rang and Shawn managed to get there before I could. I ran next to him saying, "Oh my goodness!" over and over. He handed me the phone and I anxiously answered, hoping we were getting a heart. Unfortunately it was the Calgary hospital calling with bad news. Hope had been vomiting blood and they would be holding her feeds for the night.
This morning I arrived exhausted. Although I had a shower, I heard more today about how tired I looked than I normally do. I simply did not sleep well after the discouraging news and the extreme high of thinking we were getting a heart, to the low of realizing there was no heart and Hope was getting worse.
Hope was extremely sleepy all day today and less grumpy, but not herself. Her feeds were re-started and after only a couple of hours, the vomiting returned. The blood has not increased so we don't know what that is from at this point as it wasn't severe enough to warrant a great deal of testing. Her feeds were rested for a while and restarted. The vomiting returned and Hope was not happy. The feeds are coming back undigested and clearly not tolerated.
This evening just before 7pm the hospital called once again. Hope continues to not tolerate her feeds and they needed to make a decision on what to do. This morning Hope weighed in at only 12 pounds. That does not leave her a great deal of weight to lose and we need to guard every gram on her body. The doctors did not feel that putting her on IV fluids through the night was safe with her being so skinny. They decided instead to up her heart meds. That doesn't sound like a big deal, but you can only go so high on them and they reserve this tactic as a last option. Hope's dose was increased by 50% of her previous dose. If this works, we have more time. If this is not effective, Edmonton will be contacted in the morning and there is a good chance we'll be heading to Edmonton for the Berlin heart. This is obviously devasting news and signals the end of our battle with Hope. If Hope does not get a heart quickly, there is nothing more they can do. Although the Berlin heart may give us more time, it is also extremely dangerous with Hope's clotting tendency and how tiny she is.
Just before 10 tonight I found out that one of Hope's heart friends is getting a new heart tomorrow morning. You would think I would feel jealous and frustrated. I actually feel slightly encouraged. I have felt all along that until Caleb got a heart, Hope would not receive one. It is more complicated to match hearts than simply the number of people on the list, but I always felt he would get a heart first. Knowing that his heart has arrived, I feel like Hope's heart will not be as far away as I had thought it would be.
We need a miracle. We could truly use a heart by morning if possible. I know that God is in control and is watching over our family. I pray that his plan is for Hope to have a new heart before she needs a Berlin heart. Please join us in praying for a miracle. We are also praying for a heart for Curtis, pray for him as you think of Hope. He's much older than her and needs a bigger heart, but is in great need as well. Pray for the parents of North America. I read an article this week that talked of the lack of organ donors and how the problem is getting worse and not better. I pray that Hope's story not only raises awareness for her, but for everyone that will need an organ in the years to come.
It started early this morning just after midnight. Shawn and I were asleep in bed, had not been asleep for long but had finally managed to fall asleep. Our home phone rang and Shawn managed to get there before I could. I ran next to him saying, "Oh my goodness!" over and over. He handed me the phone and I anxiously answered, hoping we were getting a heart. Unfortunately it was the Calgary hospital calling with bad news. Hope had been vomiting blood and they would be holding her feeds for the night.
This morning I arrived exhausted. Although I had a shower, I heard more today about how tired I looked than I normally do. I simply did not sleep well after the discouraging news and the extreme high of thinking we were getting a heart, to the low of realizing there was no heart and Hope was getting worse.
Hope was extremely sleepy all day today and less grumpy, but not herself. Her feeds were re-started and after only a couple of hours, the vomiting returned. The blood has not increased so we don't know what that is from at this point as it wasn't severe enough to warrant a great deal of testing. Her feeds were rested for a while and restarted. The vomiting returned and Hope was not happy. The feeds are coming back undigested and clearly not tolerated.
This evening just before 7pm the hospital called once again. Hope continues to not tolerate her feeds and they needed to make a decision on what to do. This morning Hope weighed in at only 12 pounds. That does not leave her a great deal of weight to lose and we need to guard every gram on her body. The doctors did not feel that putting her on IV fluids through the night was safe with her being so skinny. They decided instead to up her heart meds. That doesn't sound like a big deal, but you can only go so high on them and they reserve this tactic as a last option. Hope's dose was increased by 50% of her previous dose. If this works, we have more time. If this is not effective, Edmonton will be contacted in the morning and there is a good chance we'll be heading to Edmonton for the Berlin heart. This is obviously devasting news and signals the end of our battle with Hope. If Hope does not get a heart quickly, there is nothing more they can do. Although the Berlin heart may give us more time, it is also extremely dangerous with Hope's clotting tendency and how tiny she is.
Just before 10 tonight I found out that one of Hope's heart friends is getting a new heart tomorrow morning. You would think I would feel jealous and frustrated. I actually feel slightly encouraged. I have felt all along that until Caleb got a heart, Hope would not receive one. It is more complicated to match hearts than simply the number of people on the list, but I always felt he would get a heart first. Knowing that his heart has arrived, I feel like Hope's heart will not be as far away as I had thought it would be.
We need a miracle. We could truly use a heart by morning if possible. I know that God is in control and is watching over our family. I pray that his plan is for Hope to have a new heart before she needs a Berlin heart. Please join us in praying for a miracle. We are also praying for a heart for Curtis, pray for him as you think of Hope. He's much older than her and needs a bigger heart, but is in great need as well. Pray for the parents of North America. I read an article this week that talked of the lack of organ donors and how the problem is getting worse and not better. I pray that Hope's story not only raises awareness for her, but for everyone that will need an organ in the years to come.
Wednesday, 15 May 2013
A New Tooth
This week I have been reminded of how sick and twisted this sinful world is. Many of you have likely heard of and been following the disappearance and murder of Tim Bosma. I have finally understood how people that do not know us well, could care so deeply for our family. Each morning I would look for updates on my cell phone, often before getting out of bed. I have prayed throughout the day, constantly for this family. Our world is sinful and fallen, we will never live in a world that is truly safe until we reach Heaven.
Hope has been decently stable. Yesterday I saw for the first time how dependent she's become on her heart meds. She needed a large volume of blood drawn for some transplant blood work and they decided it wouldn't be easy to get off her body. In an effort to save her from being poked multiple times, they agreed to take it off her line. Something that would never have happened if the doctor from Edmonton wasn't here for the week. The heart med is only effective while it's running and disappears from the body in seconds. It was stopped for a total of 90 seconds at most. In that short time, Hope's heart rate went extremely high, her oxygen levels dropped and she began breathing very quickly. Lord, her little heart is fighting to keep going, but she needs a new one.
Hope was beyond miserable today. She woke up for the day at 5am and could not fall asleep for a decent nap. Assuming she was teething, I kept looking at her red gums on the bottom and looked for new teeth. After hours, I finally realized a tooth had broken through on the top. Hope has finally gotten another tooth, her third, after 5 long months with no new teeth. I'm thankful it's a normal problem for once and not a major issue.
Thank you for continuing to pray for us all.
Hope has been decently stable. Yesterday I saw for the first time how dependent she's become on her heart meds. She needed a large volume of blood drawn for some transplant blood work and they decided it wouldn't be easy to get off her body. In an effort to save her from being poked multiple times, they agreed to take it off her line. Something that would never have happened if the doctor from Edmonton wasn't here for the week. The heart med is only effective while it's running and disappears from the body in seconds. It was stopped for a total of 90 seconds at most. In that short time, Hope's heart rate went extremely high, her oxygen levels dropped and she began breathing very quickly. Lord, her little heart is fighting to keep going, but she needs a new one.
Hope was beyond miserable today. She woke up for the day at 5am and could not fall asleep for a decent nap. Assuming she was teething, I kept looking at her red gums on the bottom and looked for new teeth. After hours, I finally realized a tooth had broken through on the top. Hope has finally gotten another tooth, her third, after 5 long months with no new teeth. I'm thankful it's a normal problem for once and not a major issue.
Thank you for continuing to pray for us all.
Monday, 13 May 2013
A Shorter Wait?
I had planned to write yesterday but was honestly struggling through the day and felt that my emotions were too all over the map to put into words. I cried myself to sleep on Saturday and could not figure out why I had so much emotion. I finally realized that Mother's Day weekend was pushing me over the edge. I kept hearing people talk about all the fun things they were going to do as a family and cute things the kids would do with Daddy for their Mom. Eventually it got to me and I felt sad knowing that we would celebrate those morning moments without Hope.
On Sunday morning I got up and went into Sadie's room. The first thing she said to was, "I want Baby Hope to come home Mommy." It was a sweet thing to hear her say, but not what I needed in a deeply emotional moment. All day I fought off the tears when someone asked how I was doing or gave me a hug. It was tough.
I managed to pull myself together in the evening, once again realizing that crying about my life doesn't change it. Shawn and I had a nice evening together and I tried to not think about the pain and focus on the joy I feel when I'm with the girls.
This morning I started another week with Hope. I was feeling pretty tired before we even began the week. I happened to notice the board that lists the doctors on service in the ICU. One of our favourite ICU doctors from Edmonton is down helping out in Calgary for the week. I was thrilled to know that I'd be working with him this week and that he'd have a good understanding of where Hope has been. He told me today that he's never seen her looking so well before. That was encouraging! I also met with our cardiologist and he told me that although Hope has only been on the list for transplant for 2 weeks, she has the most common blood type. She can take a heart from any blood type and typically children with her blood type do not wait as long as others. I sure hope he's right!
I came home to a letter from the Stollery letting us know that Hope was given TPN (liquid nutrients) in Edmonton that they later discovered had been mixed incorrectly in the pharmacy. Obviously she did alright through it, but it just reminds me that there are a lot of risks to hospital life and we need to get Hope home and living in a more normal environment as soon as we can!
I've had to eat my pride today and accept a friend's invitation to bring food and another friend's kindness to come and help clean some of the dirt and dust that covers our new home. I want to do these things, I'm even good at them, but I'm simply not getting to them and it's not getting done. This has been done for us in the past, I just feel that after 13 months our friends deserve a break too! I am thankful again tonight that we are not alone. We have God, which is our strength and he is our hope. We are also extremely blessed by our friends and all those that stand with us and sacrifice their own time to keep our family going. I do hope that one day I can return the kindness to others!
On Sunday morning I got up and went into Sadie's room. The first thing she said to was, "I want Baby Hope to come home Mommy." It was a sweet thing to hear her say, but not what I needed in a deeply emotional moment. All day I fought off the tears when someone asked how I was doing or gave me a hug. It was tough.
I managed to pull myself together in the evening, once again realizing that crying about my life doesn't change it. Shawn and I had a nice evening together and I tried to not think about the pain and focus on the joy I feel when I'm with the girls.
This morning I started another week with Hope. I was feeling pretty tired before we even began the week. I happened to notice the board that lists the doctors on service in the ICU. One of our favourite ICU doctors from Edmonton is down helping out in Calgary for the week. I was thrilled to know that I'd be working with him this week and that he'd have a good understanding of where Hope has been. He told me today that he's never seen her looking so well before. That was encouraging! I also met with our cardiologist and he told me that although Hope has only been on the list for transplant for 2 weeks, she has the most common blood type. She can take a heart from any blood type and typically children with her blood type do not wait as long as others. I sure hope he's right!
I came home to a letter from the Stollery letting us know that Hope was given TPN (liquid nutrients) in Edmonton that they later discovered had been mixed incorrectly in the pharmacy. Obviously she did alright through it, but it just reminds me that there are a lot of risks to hospital life and we need to get Hope home and living in a more normal environment as soon as we can!
I've had to eat my pride today and accept a friend's invitation to bring food and another friend's kindness to come and help clean some of the dirt and dust that covers our new home. I want to do these things, I'm even good at them, but I'm simply not getting to them and it's not getting done. This has been done for us in the past, I just feel that after 13 months our friends deserve a break too! I am thankful again tonight that we are not alone. We have God, which is our strength and he is our hope. We are also extremely blessed by our friends and all those that stand with us and sacrifice their own time to keep our family going. I do hope that one day I can return the kindness to others!
Saturday, 11 May 2013
A Weary Mother
Some days I feel the strength of a lion, or Jesus in me. Other days I feel like I'm weak and not able to carry on. Today was a tough day. This morning, for the millionth time, we had to all get up early in order to drive Shawn to the hospital. We are a one car family and have been all along. It works perfectly for our family because of where we live. Shawn rides his bike to work and in the evenings, we go out as a family or one of us stays home with the kids anyway. This still works during the week for us, but the weekends are now a dreaded thing in our home. If I want to accomplish anything, or give Shawn a break later in the day, we have to get Sadie up early and go to the hospital in the morning to drop Shawn off.
This weekend was especially bad as Shawn needed to do a lot of "man" work on the old house. We still had things in the garage that needed to be thrown away, taken to the dump or moved. Shawn was going to spend the morning at the hospital and I was going to take over at noon, with Sadie. Sadie does well at the hospital for a time, but 5 hours is sure pushing it. Thankfully my Mother in law rescued me and came to help me with the two girls at the hospital. Sadie was then taken with some friends to a BBQ with lots of kids that she's been begging us to go play with.
When I was a true stay at home mom, I used to get together with friends all the time. Now that I'm at the hospital all day and Sadie is with Melanie, her nanny, we hardly get together for play dates. This is difficult on me as I miss those times with my friends, but it's also hard on Sadie as well. On Friday I sat and cried after thinking about the beautiful weather and playing at the park with Sadie. Instead I sat in a room all day with a baby that slept for half of my time there, but will randomly wake and be upset if I'm gone.
Shawn and I are burnt out. As we pulled up to the hospital this morning he asked me if I was okay and I burst into tears. I am so frustrated. I just want Hope to come home and now it could literally be months or even years before that's possible. I know that I'll pull myself together for my family, but I'm terrified of continuing this journey for the entire summer and perhaps into next year.
One of the ICU doctors convinced the nurses to transfer Hope's pile of pumps, tubes and wires into her stroller. They then allowed us to walk around outside with her for a few minutes, with them of course! It wasn't a long walk, but was wonderful to get Hope outside and a much needed distraction from another day at the hospital.
As this journey continues and has no end in sight, I find we spend less hours at the hospital. I used to be shocked when I would see children alone, now I understand. We still don't like Hope to be alone and only leave when she has a volunteer or friend with her, but we do leave. At first we left at dinner time, then overnight and now we've realized how burnt out we are and have started looking for people to sit with her on Saturday and Sunday mornings so we can actually look forward to a lower stress weekend and some quality time with Sadie. I feel guilty at times, but then I have to remind myself that we are protecting our family by keeping ourselves from completely breaking down. If this was short term we could stop our lives, but it's not. Eventually I have to start grocery shopping, paying bills and taking care of our family again.
Hope is back on oxygen full time now. She was needing it more and is currently relying on it. She continues to have diarrhea at night and threw up in the night last night. By the pile of laundry I found today, I'm guessing she threw up a lot. She was off feeds until we got in this morning and appears to be alright now. The doctors did find a way to put her diuretics through the PICC line with the heart meds! That will help with Hope's breathing as they are much more effective. At the same time, the diuretics are slowly destroying her kidneys in the process. We need a heart and we need it sooner rather than later.
I enter my second Mother's Day with Hope and my third with Sadie, completely exhausted. I love my kids and I will fight for them no matter what, but I long for the day that Shawn and I can leave them with people we trust and go on a much needed vacation. We're praying that is possible before 2020! We know that our families are tired as well, we have relied on them a lot over the last 13 months. God, would you bless our family with a heart soon? Would you give the family that is going to lose their child, the strength to donate their organs? Would you give us hope to cling to until that happens?
This weekend was especially bad as Shawn needed to do a lot of "man" work on the old house. We still had things in the garage that needed to be thrown away, taken to the dump or moved. Shawn was going to spend the morning at the hospital and I was going to take over at noon, with Sadie. Sadie does well at the hospital for a time, but 5 hours is sure pushing it. Thankfully my Mother in law rescued me and came to help me with the two girls at the hospital. Sadie was then taken with some friends to a BBQ with lots of kids that she's been begging us to go play with.
When I was a true stay at home mom, I used to get together with friends all the time. Now that I'm at the hospital all day and Sadie is with Melanie, her nanny, we hardly get together for play dates. This is difficult on me as I miss those times with my friends, but it's also hard on Sadie as well. On Friday I sat and cried after thinking about the beautiful weather and playing at the park with Sadie. Instead I sat in a room all day with a baby that slept for half of my time there, but will randomly wake and be upset if I'm gone.
Shawn and I are burnt out. As we pulled up to the hospital this morning he asked me if I was okay and I burst into tears. I am so frustrated. I just want Hope to come home and now it could literally be months or even years before that's possible. I know that I'll pull myself together for my family, but I'm terrified of continuing this journey for the entire summer and perhaps into next year.
One of the ICU doctors convinced the nurses to transfer Hope's pile of pumps, tubes and wires into her stroller. They then allowed us to walk around outside with her for a few minutes, with them of course! It wasn't a long walk, but was wonderful to get Hope outside and a much needed distraction from another day at the hospital.
As this journey continues and has no end in sight, I find we spend less hours at the hospital. I used to be shocked when I would see children alone, now I understand. We still don't like Hope to be alone and only leave when she has a volunteer or friend with her, but we do leave. At first we left at dinner time, then overnight and now we've realized how burnt out we are and have started looking for people to sit with her on Saturday and Sunday mornings so we can actually look forward to a lower stress weekend and some quality time with Sadie. I feel guilty at times, but then I have to remind myself that we are protecting our family by keeping ourselves from completely breaking down. If this was short term we could stop our lives, but it's not. Eventually I have to start grocery shopping, paying bills and taking care of our family again.
Hope is back on oxygen full time now. She was needing it more and is currently relying on it. She continues to have diarrhea at night and threw up in the night last night. By the pile of laundry I found today, I'm guessing she threw up a lot. She was off feeds until we got in this morning and appears to be alright now. The doctors did find a way to put her diuretics through the PICC line with the heart meds! That will help with Hope's breathing as they are much more effective. At the same time, the diuretics are slowly destroying her kidneys in the process. We need a heart and we need it sooner rather than later.
I enter my second Mother's Day with Hope and my third with Sadie, completely exhausted. I love my kids and I will fight for them no matter what, but I long for the day that Shawn and I can leave them with people we trust and go on a much needed vacation. We're praying that is possible before 2020! We know that our families are tired as well, we have relied on them a lot over the last 13 months. God, would you bless our family with a heart soon? Would you give the family that is going to lose their child, the strength to donate their organs? Would you give us hope to cling to until that happens?
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