Hope's IV finally went after what I believe was 13 days. She has now been on oral diuretics for last 24 hours as a result. The grunting has returned and we're hopeful that she'll be able to adapt on her own and not need a new IV. Hope had diarrhea last night, but only once today for me. They changed the concentration of her feed in the morning, that could have been the solution. Hopefully her tummy will settle out and we won't have to lower her calorie count anymore. That little lady needs to get a lot bigger, it's better for her health. It also opens up our options for Hope. She needs to get bigger in order to receive certain heart interventions. She's still so skinny, I can feel her entire spine when I pick her up.
Hope was screaming when I walked in this morning, I could hear her down the hall. She stopped as soon as I picked her up and I felt badly that she was so upset. The nurses tell me each morning that Hope is miserable until I arrive. I wish I could be there at 6:30 when she wakes up, but then I would miss out on sleep, and my morning with Sadie. There is just no easy answer. When Hope was on the ward, we had someone stay overnight with her. In the PICU there is no bed for someone to stay. We could have them bring in a pull out couch, but it's not an ideal sleeping environment and we feel badly asking someone to stay.
Hope had to have blood taken from a heel poke today. That is how they run a blood gas. Hope is poked with a needle like a diabetic would be, but they squeeze the blood out and into a tube. Hope screamed so hard, that she slept for over 3 hours after it was over. I can tell that her body is so weak and it discourages me. Physio is difficult as I feel badly torturing a child who's life is already so tough. I know that the end result is worth it, but right now it feels mean.
I have only 5 boxes left unpacked. Mostly of things I don't want or need to unpack in the garage once we get around to building some shelves. I made a list this morning of handy man things I need Shawn to do. I'm trying to pace myself in bugging him about it all as he works all day and isn't thrilled to work all night afterwards. Fair enough! We have the things we need; beds, towels, kitchen stuff and places to sit. We may take a while to hang things on our walls, but that happens often when people move!
Continuing to wait for a heart. Please continue to pray.
Thursday, 9 May 2013
Tuesday, 7 May 2013
Power Down
Writing updates can be stressful some days. Currently in life it is a huge burden. I want to update and give people specifics to pray for and I want to make sure people don't forget about Hope. At the same time, I don't often find the time until midnight and I'm getting 6 hours or less of sleep a night and I'm exhausted. I'm not sure how to remedy that until we finish unpacking or Hope gets out of the hospital!
Hope is still decently stable. Her respiration rate is high (she's breathing quickly) and the doctors are hoping this is not the start of an infection. Please pray against infection in her body as she'd need to be taken off the transplant list until it cleared. Today they increased the oil that is being added to Hope's feeds and she appears to be tolerating it. She is almost at her calorie goal and we're hoping she'll start to gain weight. This morning Hope weighed in at only 13 pounds. She has continued to lose weight as we've been in hospital and is lighter than she was at admission, 9 months ago.
Tomorrow the doctors will increase the iron supplement that Hope is receiving and we're hoping her stomach will continue to tolerate it. She needs the extra iron and she's done very well with it so far. Hope's fluid balance continues to be a problem. I think she is extremely dehydrated just by knowing what she normally looks like. According to the amount of fluid that goes in and comes out, she's retaining a lot of fluid. I asked the doctors to come down on her diuretics today as Hope is so thirsty and I don't care what the numbers show, Hope's body looks dry to me and she's not happy like that. Hopefully she balanced out and will be more comfortable by morning.
Tonight we went over to the old house to sell an old hutch we had in the garage to a stranger from kijiji. On the way out we ran into our old neighbours from across the street. We don't know them well and they asked us what we were doing and if we'd moved and such. We got on to talking about Hope and they told us that they have a grandchild going for heart surgery in Edmonton sometime soon as well. The husband commented on the fact that our community has been amazing rallying around us. He said they have noticed all the people coming by to drop things off, chip in with yard work or the many faces picking up Sadie. I was touched to know that even without words, God was showing this man the importance of community. It reminded me once again of how much we need those around us and how that is the only way we've made it through this last 13 months with Hope.
Rachelle is heading back to Ontario tomorrow morning and we're very sad to lose her. It's been incredible to have an extra set of hands around here. Shawn and I could not have done as much as we have without her help. We keep joking that we're going to turn off the power tonight to make sure her phone doesn't wake her up in the morning!
I'm personally struggling right now with the idea of waiting for a heart. I've mentioned before that I'm not the most patient woman. I think waiting to find out if you child will receive a potential future, or die waiting is one of the most painful things to maintain your patience through. We know that Hope needs to get a heart quickly, and yet I look at some of the other children waiting and wonder how long it will take to get a heart. I hope it will be soon, but I have a feeling we're in for the long haul. I'm not sure how much longer we can carry on without a complete burn out. Shawn and I are extremely sleep deprived and our bodies are slowly shutting down. Please pray for strength and for joy in the midst of these struggles.
Hope is still decently stable. Her respiration rate is high (she's breathing quickly) and the doctors are hoping this is not the start of an infection. Please pray against infection in her body as she'd need to be taken off the transplant list until it cleared. Today they increased the oil that is being added to Hope's feeds and she appears to be tolerating it. She is almost at her calorie goal and we're hoping she'll start to gain weight. This morning Hope weighed in at only 13 pounds. She has continued to lose weight as we've been in hospital and is lighter than she was at admission, 9 months ago.
Tomorrow the doctors will increase the iron supplement that Hope is receiving and we're hoping her stomach will continue to tolerate it. She needs the extra iron and she's done very well with it so far. Hope's fluid balance continues to be a problem. I think she is extremely dehydrated just by knowing what she normally looks like. According to the amount of fluid that goes in and comes out, she's retaining a lot of fluid. I asked the doctors to come down on her diuretics today as Hope is so thirsty and I don't care what the numbers show, Hope's body looks dry to me and she's not happy like that. Hopefully she balanced out and will be more comfortable by morning.
Tonight we went over to the old house to sell an old hutch we had in the garage to a stranger from kijiji. On the way out we ran into our old neighbours from across the street. We don't know them well and they asked us what we were doing and if we'd moved and such. We got on to talking about Hope and they told us that they have a grandchild going for heart surgery in Edmonton sometime soon as well. The husband commented on the fact that our community has been amazing rallying around us. He said they have noticed all the people coming by to drop things off, chip in with yard work or the many faces picking up Sadie. I was touched to know that even without words, God was showing this man the importance of community. It reminded me once again of how much we need those around us and how that is the only way we've made it through this last 13 months with Hope.
Rachelle is heading back to Ontario tomorrow morning and we're very sad to lose her. It's been incredible to have an extra set of hands around here. Shawn and I could not have done as much as we have without her help. We keep joking that we're going to turn off the power tonight to make sure her phone doesn't wake her up in the morning!
I'm personally struggling right now with the idea of waiting for a heart. I've mentioned before that I'm not the most patient woman. I think waiting to find out if you child will receive a potential future, or die waiting is one of the most painful things to maintain your patience through. We know that Hope needs to get a heart quickly, and yet I look at some of the other children waiting and wonder how long it will take to get a heart. I hope it will be soon, but I have a feeling we're in for the long haul. I'm not sure how much longer we can carry on without a complete burn out. Shawn and I are extremely sleep deprived and our bodies are slowly shutting down. Please pray for strength and for joy in the midst of these struggles.
Saturday, 4 May 2013
Holmes on Homes
Moving is stressful in the most normal circumstances. I will admit that I am quite stressed and find my patience level to be extremely low, but I think we're doing fairly well with all things considered. I have the motivation of knowing that we could be called to Edmonton at any moment. I think about what I want to come home to and it pushes me to do as much as I possibly can. I would guess that there are only 10% of the boxes left unpacked. Many of them are boxes of things we likely should have thrown out to begin with.
On Thursday I wasn't able to see Hope at all. On Friday I was losing my mind by the afternoon and went over to have a quick snuggle to get me through the evening of unpacking. This morning I woke up early and got over to the hospital as quickly as I could. I was only going to be there until noon and I wanted as much time as possible. I want to be finished with everything so I can get back to seeing more of my girl! Hope was excited to cuddle and quickly settled to sleep in my arms. We spent the morning together and I got a lot of smiles out of her. She received a blood transfusion yesterday and it appears to be helping her feel a lot better.
Hope was started on some oral iron supplements yesterday. These can be extremely tough on the stomach and we are hopeful that Hope's body will not fight against the added iron. Please pray that they are able to continue giving this to Hope as she really needs it. Tomorrow Hope will spend the morning with Shawn. She absolutely lights up when he's around and smiles more for him than anyone else. I'm going to try to hit 6 different locations to run errands and get to the hospital by 2. I'm not sure that's possible, but I'm going to give it a valiant effort.
The extra hassles have made this move that much more difficult. Our brand new washing machine is not working properly. Samsung is sending someone out, on Tuesday. We've been going over to the old house to do laundry as we have piles of things and a toddler that sometimes accidentally pees her pants. You simply cannot live with pee pants in your house for too long! We bought stools for the island and one of them was damaged in the box. I'll now have to drive back to the store for an exchange. Our cable/internet was hooked up on Thursday, did not work, and was re-connected today. The curtain rods I bought do not work, the curtains are too short and we have yet to find a lot of Shawn's tools. Where is Mike Holmes when you need him? Shawn is great, but he only has two hands!
Sadie has adjusted well, she seems excited about her new room and is already familiar with all the new locations for her toys. Shawn and I are both exhausted, aching all over and longing for a vacation. We deeply pray that Hope gets a heart quickly and that it makes a huge impact on her overall health. We would love to have her stable, at home and eventually ready to get on a plane. All dreams we talk about often and continue to long for. Thank you for praying for our family and for being patient as I've struggled to find the time for updating.
On Thursday I wasn't able to see Hope at all. On Friday I was losing my mind by the afternoon and went over to have a quick snuggle to get me through the evening of unpacking. This morning I woke up early and got over to the hospital as quickly as I could. I was only going to be there until noon and I wanted as much time as possible. I want to be finished with everything so I can get back to seeing more of my girl! Hope was excited to cuddle and quickly settled to sleep in my arms. We spent the morning together and I got a lot of smiles out of her. She received a blood transfusion yesterday and it appears to be helping her feel a lot better.
Hope was started on some oral iron supplements yesterday. These can be extremely tough on the stomach and we are hopeful that Hope's body will not fight against the added iron. Please pray that they are able to continue giving this to Hope as she really needs it. Tomorrow Hope will spend the morning with Shawn. She absolutely lights up when he's around and smiles more for him than anyone else. I'm going to try to hit 6 different locations to run errands and get to the hospital by 2. I'm not sure that's possible, but I'm going to give it a valiant effort.
The extra hassles have made this move that much more difficult. Our brand new washing machine is not working properly. Samsung is sending someone out, on Tuesday. We've been going over to the old house to do laundry as we have piles of things and a toddler that sometimes accidentally pees her pants. You simply cannot live with pee pants in your house for too long! We bought stools for the island and one of them was damaged in the box. I'll now have to drive back to the store for an exchange. Our cable/internet was hooked up on Thursday, did not work, and was re-connected today. The curtain rods I bought do not work, the curtains are too short and we have yet to find a lot of Shawn's tools. Where is Mike Holmes when you need him? Shawn is great, but he only has two hands!
Sadie has adjusted well, she seems excited about her new room and is already familiar with all the new locations for her toys. Shawn and I are both exhausted, aching all over and longing for a vacation. We deeply pray that Hope gets a heart quickly and that it makes a huge impact on her overall health. We would love to have her stable, at home and eventually ready to get on a plane. All dreams we talk about often and continue to long for. Thank you for praying for our family and for being patient as I've struggled to find the time for updating.
Friday, 3 May 2013
Officially Listed!
Today was moving day! And that's why it's me, Amy's mom, who is writing this blog!!......
The move has gone well and Amy, Shawn and Sadie are in their new house. They may be surrounded by boxes, but the beds are made up and they can crawl in bed tonight knowing that the biggest job is done! Many thanks to their awesome friends who have helped in various ways....packing, unpacking, providing meals, keeping Sadie entertained, cuddling Hope and just being supportive and generous with their time and their love. What a blessing you have been!
Hope was officially listed for transplant on Wednesday. And now, the wait begins. The doctors have told Amy and Shawn that the best chance for Hope would be to get a new heart quickly. They have talked to them about other options to give her more time, should Hope's heart continue to fail, but because of Hope's complicated anatomy, these options are not ideal for her and some should not even be considered. For instance, ecmo, the heart/lung assistance machine. Because of Hope's clot in her neck, the doctors feel that by the time they were able to find a viable vein to use to place the cannula, too much time would have elapsed and Hope would be at risk for brain damage. The Berlin heart is an option (mechanical heart) but this could also be very risky for Hope due to her tendency to clot. A clot while on the Berlin heart could result in a stroke for her. All in all, the ideal scenario would be for Hope to get a new heart as soon as possible. And so....this is what we are praying for!
Ever since we got the news that Hope would be born with a severe heart defect, people have been praying for her and her family. Many of you reading this blog right now have been faithfully and earnestly praying throughout this long and difficult journey. Today, the stats for the blog show that this site has been visited over one million times and people in 65 different countries have read the blog at some point since it was created. We believe, without a doubt that Hope would not be here today, if not for the army of prayer warriors standing in the gap for her. She has overcome so much this past year through God's miraculous power! We give Him ALL the glory for what HE has done in this little girl's life and we humbly ask Him to continue to spare her life and give her the new heart that she so desperately needs.
The move has gone well and Amy, Shawn and Sadie are in their new house. They may be surrounded by boxes, but the beds are made up and they can crawl in bed tonight knowing that the biggest job is done! Many thanks to their awesome friends who have helped in various ways....packing, unpacking, providing meals, keeping Sadie entertained, cuddling Hope and just being supportive and generous with their time and their love. What a blessing you have been!
Hope was officially listed for transplant on Wednesday. And now, the wait begins. The doctors have told Amy and Shawn that the best chance for Hope would be to get a new heart quickly. They have talked to them about other options to give her more time, should Hope's heart continue to fail, but because of Hope's complicated anatomy, these options are not ideal for her and some should not even be considered. For instance, ecmo, the heart/lung assistance machine. Because of Hope's clot in her neck, the doctors feel that by the time they were able to find a viable vein to use to place the cannula, too much time would have elapsed and Hope would be at risk for brain damage. The Berlin heart is an option (mechanical heart) but this could also be very risky for Hope due to her tendency to clot. A clot while on the Berlin heart could result in a stroke for her. All in all, the ideal scenario would be for Hope to get a new heart as soon as possible. And so....this is what we are praying for!
Ever since we got the news that Hope would be born with a severe heart defect, people have been praying for her and her family. Many of you reading this blog right now have been faithfully and earnestly praying throughout this long and difficult journey. Today, the stats for the blog show that this site has been visited over one million times and people in 65 different countries have read the blog at some point since it was created. We believe, without a doubt that Hope would not be here today, if not for the army of prayer warriors standing in the gap for her. She has overcome so much this past year through God's miraculous power! We give Him ALL the glory for what HE has done in this little girl's life and we humbly ask Him to continue to spare her life and give her the new heart that she so desperately needs.
Tuesday, 30 April 2013
New Beginnings
I am very thankful to say we are back in Calgary! Hope was transferred around lunch time and was back in the Calgary PICU just after 2pm today. I made the long drive back with Sadie and Rachelle and went straight to the hospital to see Hope. We sat with Hope for a couple of hours, but eventually my exhaustion won and we headed home. I continued to pack boxes and try to get things organized around the house, but by 8pm I was on the couch and dead to the world. I'm not sure if I've ever felt so tired, I feel like I'm more exhausted than I was after an extremely long labour with Sadie!
I know that my body is physically tired and lacking sleep, but I'm fairly confident that the true exhaustion is emotional. Last week was extremely overwhelming and very draining. I wish that I was coming back to a relaxing life, sadly that's not possible with Hope...and a move! I'm hopeful that if I run myself ragged for the next few days, it will pay off by having some time to relax in the future? I'm sure it won't work out that way, but I can dream.
Tomorrow morning the transplant team will have their conference and make a final decision regarding Hope. We are anxious to have answers, but do not feel comforted by being listed for a transplant. Although it is what we believe she needs, it's not what we wanted for her. Please pray for Shawn and I as we begin to face that reality that our daughter needs a new heart in order to live. It's something we believed would happen when she was much older, but not when she was only a year old.
May 1st will mark a day of new beginnings for us, a new house and the wait for a healthy new heart. Please Lord, would you give us the strength to continue this journey with Hope? We are weak, but You are strong. We are tired, but You never tire and will always carry us through.
I know that my body is physically tired and lacking sleep, but I'm fairly confident that the true exhaustion is emotional. Last week was extremely overwhelming and very draining. I wish that I was coming back to a relaxing life, sadly that's not possible with Hope...and a move! I'm hopeful that if I run myself ragged for the next few days, it will pay off by having some time to relax in the future? I'm sure it won't work out that way, but I can dream.
Tomorrow morning the transplant team will have their conference and make a final decision regarding Hope. We are anxious to have answers, but do not feel comforted by being listed for a transplant. Although it is what we believe she needs, it's not what we wanted for her. Please pray for Shawn and I as we begin to face that reality that our daughter needs a new heart in order to live. It's something we believed would happen when she was much older, but not when she was only a year old.
May 1st will mark a day of new beginnings for us, a new house and the wait for a healthy new heart. Please Lord, would you give us the strength to continue this journey with Hope? We are weak, but You are strong. We are tired, but You never tire and will always carry us through.
Monday, 29 April 2013
April Snow Storms
Last night I could not sleep and was up reading until almost 1am. I finally fell asleep for only 6 hours before Shawn and I were up to be at the hospital on time. I am exhausted today, but was thankful to have Shawn with me and not to be going through this all alone.
During rounds the doctor said that Hope would likely be listed in the next few days for transplant. That was the first time we'd heard that things were progressing in that direction. After rounds we were taken into his office with the head of transplant and a few of the residents. We had the meeting that we were supposed to have last week, the meeting that had not gone well. It's a difficult meeting to sit through, even though we are aware of all the risks, it's not easy to hear them listed.
We were told that Hope is an extremely high risk transplant. The clots she already has in her body raise her risks a lot and her high pressures from her tiny pulmonary arteries will continue to be a problem post transplant. There is no guarantee that having a whole heart will correct her feeding issues or liver dysfunction. Hope is already forming calcium in her kidneys from her long term diuretics treatment. The medications she'll be on post transplant will also damage her kidneys and we can only pray it does not get bad enough to make them shut down. The medications required post transplant have a high risk for causing cancer and other not so nice things. There is always the risk of rejection and infection as well. It is not a cure, as I've said before. It is another step in her treatment, but not a final solution.
Hope will be discussed tomorrow in surgical rounds again. As long as the surgeons maintain their opinion that surgery is not an option at this point, Hope will be put on the list on Wednesday. This is not a final decision. If Hope somehow improves and is able to go home and come off the heart assistance meds, she would be taken off the list in hopes that she could have the Fontan (3rd surgery). Shawn and I agree that if she is able to have her final surgery, we would prefer that over a transplant and the risks associated with it at this point.
After the meeting with transplant, Shawn and I met with the doctor that does all the VAD's (ventricular assistance devices) for the hospital. Edmonton has one of the best programs in the world for VAD's (an artificial heart that pumps for your own heart while waiting for a transplant). He explained that the longer Hope is on the heart assistance drugs, the more it will damage her heart, although currently helping her. If she has to wait a long time for a heart, there is a chance that she'll need a VAD to stay alive as she waits. The VAD would need to be attached while she was still healthy enough to handle the surgery so it could happen before you would think she needs it. Hope's size only allows her to be a candidate for a Berlin Heart. I'm not even sure how to explain it properly, please google it, you'll be amazed at what they can do these days!
The Berlin Heart comes with another set of risks for Hope. Blood clots and stroke are a major risk and Hope clots more than the average baby. We pray we don't end up needing to be on the Berlin Heart. It would require Hope to be in Edmonton and in hospital until the new heart was found. The doctors feel that in Hope's current condition, she may be able to live up to a year waiting for a heart. We were also told that her blood type, A, is more highly matched and it could lower her wait time. The list is currently long and they have seen patients wait from 2 hours to 2 years on the list. We need to spread the word about organ and tissue donation. It is truly the gift that we are waiting for.
After an exhausting and difficult morning, we were told that Calgary was on their way to pick us up and would arrive in 2 hours. Shortly after, we were told that the flight was grounded due to weather and transport today was cancelled. The stress of moving, being stuck in Edmonton and the emotional exhaustion of this trip has been almost too much. They will try to transfer Hope tomorrow morning, please pray that it actually happens!
As long as Hope is relatively stable, we should be able to wait in Calgary until a heart is found for Hope. They've told us to expect a wait of 6-9 months and the potential that Hope might be in hospital and potentially in PICU through that entire time. It's difficult for us to think about still being in hospital at Christmas time this year, but it is easily possible. We appreciate your prayers right now - we sure need them.
During rounds the doctor said that Hope would likely be listed in the next few days for transplant. That was the first time we'd heard that things were progressing in that direction. After rounds we were taken into his office with the head of transplant and a few of the residents. We had the meeting that we were supposed to have last week, the meeting that had not gone well. It's a difficult meeting to sit through, even though we are aware of all the risks, it's not easy to hear them listed.
We were told that Hope is an extremely high risk transplant. The clots she already has in her body raise her risks a lot and her high pressures from her tiny pulmonary arteries will continue to be a problem post transplant. There is no guarantee that having a whole heart will correct her feeding issues or liver dysfunction. Hope is already forming calcium in her kidneys from her long term diuretics treatment. The medications she'll be on post transplant will also damage her kidneys and we can only pray it does not get bad enough to make them shut down. The medications required post transplant have a high risk for causing cancer and other not so nice things. There is always the risk of rejection and infection as well. It is not a cure, as I've said before. It is another step in her treatment, but not a final solution.
Hope will be discussed tomorrow in surgical rounds again. As long as the surgeons maintain their opinion that surgery is not an option at this point, Hope will be put on the list on Wednesday. This is not a final decision. If Hope somehow improves and is able to go home and come off the heart assistance meds, she would be taken off the list in hopes that she could have the Fontan (3rd surgery). Shawn and I agree that if she is able to have her final surgery, we would prefer that over a transplant and the risks associated with it at this point.
After the meeting with transplant, Shawn and I met with the doctor that does all the VAD's (ventricular assistance devices) for the hospital. Edmonton has one of the best programs in the world for VAD's (an artificial heart that pumps for your own heart while waiting for a transplant). He explained that the longer Hope is on the heart assistance drugs, the more it will damage her heart, although currently helping her. If she has to wait a long time for a heart, there is a chance that she'll need a VAD to stay alive as she waits. The VAD would need to be attached while she was still healthy enough to handle the surgery so it could happen before you would think she needs it. Hope's size only allows her to be a candidate for a Berlin Heart. I'm not even sure how to explain it properly, please google it, you'll be amazed at what they can do these days!
The Berlin Heart comes with another set of risks for Hope. Blood clots and stroke are a major risk and Hope clots more than the average baby. We pray we don't end up needing to be on the Berlin Heart. It would require Hope to be in Edmonton and in hospital until the new heart was found. The doctors feel that in Hope's current condition, she may be able to live up to a year waiting for a heart. We were also told that her blood type, A, is more highly matched and it could lower her wait time. The list is currently long and they have seen patients wait from 2 hours to 2 years on the list. We need to spread the word about organ and tissue donation. It is truly the gift that we are waiting for.
After an exhausting and difficult morning, we were told that Calgary was on their way to pick us up and would arrive in 2 hours. Shortly after, we were told that the flight was grounded due to weather and transport today was cancelled. The stress of moving, being stuck in Edmonton and the emotional exhaustion of this trip has been almost too much. They will try to transfer Hope tomorrow morning, please pray that it actually happens!
As long as Hope is relatively stable, we should be able to wait in Calgary until a heart is found for Hope. They've told us to expect a wait of 6-9 months and the potential that Hope might be in hospital and potentially in PICU through that entire time. It's difficult for us to think about still being in hospital at Christmas time this year, but it is easily possible. We appreciate your prayers right now - we sure need them.
Sunday, 28 April 2013
Open Beds
Hope had another good day. Shawn and I have been told we can sit down with the transplant doctors tomorrow sometime between 9 and 11. We'd like to have the meeting we were supposed to have last week that turned out poorly. Hopefully we'll be able to express our thoughts on Hope's current condition and hear their ideas as well. We will likely still have to wait until Wednesday for a final decision about transplant.
Hope's feeds are being concentrated with a pediatric formula. She is receiving 85% breast milk and 15% formula and tolerating it beautifully. It just shows how much of a difference the heart medication makes for her entire body. Hopefully she will begin to gain weight as she's continued to lose weight for the last few days. If she's not able to gain weight they'll stop attempting to feed her completely and move her to 100% TPN (liquid IV nutrients). Please pray that Hope is able to get a little bit chunky on the food that is currently going into her belly.
I don't feel as exhausted as I did before Shawn, Sadie and Rachelle arrived, thankfully. I am still anxious to get home and back to my bed and a routine I'm more familiar with. One of the nurses called Calgary today to remind them we were coming back tomorrow and to ask about the bed availability. Calgary has lots of space and we should be able to return if nothing comes up. I'm truly hoping we can get home tomorrow as a family. I'm not sure I can handle another week without Sadie and Shawn, especially as we move.
Tomorrow will hopefully be a busy day of packing up our things here, cleaning the apartment and driving back to Calgary. Please continue to pray for Hope and our family as we make that long journey once again.
Hope's feeds are being concentrated with a pediatric formula. She is receiving 85% breast milk and 15% formula and tolerating it beautifully. It just shows how much of a difference the heart medication makes for her entire body. Hopefully she will begin to gain weight as she's continued to lose weight for the last few days. If she's not able to gain weight they'll stop attempting to feed her completely and move her to 100% TPN (liquid IV nutrients). Please pray that Hope is able to get a little bit chunky on the food that is currently going into her belly.
I don't feel as exhausted as I did before Shawn, Sadie and Rachelle arrived, thankfully. I am still anxious to get home and back to my bed and a routine I'm more familiar with. One of the nurses called Calgary today to remind them we were coming back tomorrow and to ask about the bed availability. Calgary has lots of space and we should be able to return if nothing comes up. I'm truly hoping we can get home tomorrow as a family. I'm not sure I can handle another week without Sadie and Shawn, especially as we move.
Tomorrow will hopefully be a busy day of packing up our things here, cleaning the apartment and driving back to Calgary. Please continue to pray for Hope and our family as we make that long journey once again.
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