All along we have said that God is using others to deeply bless our family. Today was no different, but I was very aware of how much we need others once again.
I left for the hospital after running down to the basement to retrieve my jacket I had just washed. Less than 2 hours later, Melanie called to say the basement was covered in water. It had been completely dry when I was down there in the morning. I was not in a position to leave the hospital today as we were having some issues with Hope's breast milk. The fat was not separating and it was something I needed to stay close to remedy as soon as the milk settled. We were 5 minutes away from running out of feed when I was finally able to mix more. Shawn was at work and I felt helpless knowing that so many of our things were sitting in puddles.
Melanie went above and beyond the call of duty. She put Sadie into a bathing suit and rain boots and began tackling the water. Shawn talked her through how to turn off the water to avoid any further damage. We had a lot of boxes, a mattress, rugs, camping gear, Christmas decorations and other things in storage. The drywall is wet along two walls and we have a lot to reorganize, but we were fortunate. The damage could have been much worse if Melanie had not found the problem so quickly. Imagine how bad it would have been if no one had noticed until the evening!
Shawn's dad came over to the house and discovered that the valve on the water heater was broken. He called a plumber and had it fixed today. The plumber suggested we replace the entire water heater sometime soon but we've decided to wait it out as it's not very old and we feel like we should be able to get more time out of it.
A friend came over, with her 2 kids, and sorted through some things and helped get the reorganization started. We are so blessed to have so many amazing people in our lives that drop everything and come to our rescue.
After a trip to the dentist, I ran to Wal-mart to stock up on Rubbermaids to be sure that nothing is on the floor in a cardboard box again. It's too risky, we could have lost so much more if the things had sat much longer in all that water. I realized today that Hope has caused me to see that life is bigger than these annoyances. Yes, it was very inconvenient and not a fun experience, but what did it cost me? It cost us a few hundred dollars to replace the valve and another hundred on rubbermaids. In the long run, no one in our family was harmed and life will continue. Does it really matter if we lose a few of our earthly possessions?
I'm not sure how it's possible after today, but I feel very blessed. We have incredible support from others, Hope is getting stronger and we have a home...that is currently a bit damp! This evening I'll have to head back to the hospital to mix more of Hope's feed as she's going to run out at 11pm. It's a hassle once again, but we're blessed to have donor milk and the opportunity to feed something to Hope!
Thank you to everyone that is carrying us through life right now. We clearly could not do this alone and appear to be collecting drama!
Thursday, 28 February 2013
Tuesday, 26 February 2013
EATING!!
I feel badly that so many faithful people check our blog and find no updates some days. I find I go through spurts that I simply can't write every day and not enough is going on to warrant it either. The last few days have been very mellow and not much has changed.
Today was more exciting with the start of feeds! Hope is now receiving breast milk from a friend of mine. She is taking 2 mls an hour to start. She is currently doing well and we hope to move her up to 5 mls an hour tomorrow if she's ready. The next two weeks will give us a good idea of how Hope's body tolerates food, and how much longer we'll need to be in the hospital.
Hope sounded very stuffy when I came in this morning. The doctors decided to do a swab of her nose and send it away for testing. This is a precaution, in case she caught a cold or virus. I feel like she just needed some help with booger removal. I asked the nurse to bring in a better suction tube and we were able to remove a serious amount of boogers. I'm sure anyone would feel better after an extraction like that! The stuffy sound has stopped and she appears completely herself to me. We'll see what tomorrow holds, until then she is on isolation.
Sadie has been sick once again. She had a low grade fever yesterday morning and I started her on regular Tylenol. She put herself down for a nap at 2pm and was still sleeping when I got home at 5:30pm. She threw up at 6:30 and then perked up and was more like herself. Through the night she was up a few times crying and had a fever of 103.8 at one point. I continued with the Tylenol and was hoping she'd just snap out of it. Melanie sent me a message at noon to say that Sadie had put herself to bed once again and was asleep. This is so out of character for her and I knew something wasn't right.
Sadie has been complaining about being tired for almost 2 weeks. I began to worry that she had something funny going on in her body. I had Melanie bring her to the hospital and switch places with me. I went to Emergency with Sadie while Melanie watched Hope. Sadie was seen quite quickly and they discovered a throat infection. The doctor felt that it looked viral and should improve over the next few days with sleep, popsicles and Tylenol. I pray that he is right and I don't end up back at the hospital with her anytime soon. She's been sleeping for the last 4 hours and we haven't heard anything from her at this point. I pray she's on the mend and I'm not torn between my two sick girls again.
They also took blood and urine from Sadie to look for anything that would explain why she is always so tired. Nothing came back positive and they felt that she would improve with time. Sadie was very unimpressed with the nurse for taking her blood. She sat completely still until they poked her, then she was offended! I have an incredibly horrible nervous reaction. I laugh sometimes when I feel uncomfortable and am not sure what to do. I laugh at my kids while they're in pain sometimes and it's so terrible because I worry the nurses will think I actually find it funny, which I most certainly don't. I do feel a bit uneasy about how tired she is and hope we aren't missing something important. At the same time, she's 2 and often repeats something that she has said in the past. Perhaps she was tired 2 weeks ago, and simply decided it was fun to repeat often!
Nursey is feeling better and is back with Hope tonight. Hope is such a big fan and is happy to have her buddy back. We always relax more when we feel like Hope is with someone that knows her well and will pick up on anything that doesn't look right.
Please pray for Hope as her body is re-introduced to food. The fat is being removed from the breast milk and she remains on a fat free diet. Please pray that she tolerates this well and it's the solution we've been looking for. We are praying that she will transition well when we introduce fats once again. Please pray against any sickness in Hope's body and that Sadie will heal quickly and be able to see her sister once again. She was very upset that she wasn't allowed to go up and see her sister today. As for Shawn and me, we're just trying to keep on top of everything in our lives. We are in a fairly good routine, but still find piles of things we hope to get done at some point. I think everyone has those piles!
Today was more exciting with the start of feeds! Hope is now receiving breast milk from a friend of mine. She is taking 2 mls an hour to start. She is currently doing well and we hope to move her up to 5 mls an hour tomorrow if she's ready. The next two weeks will give us a good idea of how Hope's body tolerates food, and how much longer we'll need to be in the hospital.
Hope sounded very stuffy when I came in this morning. The doctors decided to do a swab of her nose and send it away for testing. This is a precaution, in case she caught a cold or virus. I feel like she just needed some help with booger removal. I asked the nurse to bring in a better suction tube and we were able to remove a serious amount of boogers. I'm sure anyone would feel better after an extraction like that! The stuffy sound has stopped and she appears completely herself to me. We'll see what tomorrow holds, until then she is on isolation.
Sadie has been sick once again. She had a low grade fever yesterday morning and I started her on regular Tylenol. She put herself down for a nap at 2pm and was still sleeping when I got home at 5:30pm. She threw up at 6:30 and then perked up and was more like herself. Through the night she was up a few times crying and had a fever of 103.8 at one point. I continued with the Tylenol and was hoping she'd just snap out of it. Melanie sent me a message at noon to say that Sadie had put herself to bed once again and was asleep. This is so out of character for her and I knew something wasn't right.
Sadie has been complaining about being tired for almost 2 weeks. I began to worry that she had something funny going on in her body. I had Melanie bring her to the hospital and switch places with me. I went to Emergency with Sadie while Melanie watched Hope. Sadie was seen quite quickly and they discovered a throat infection. The doctor felt that it looked viral and should improve over the next few days with sleep, popsicles and Tylenol. I pray that he is right and I don't end up back at the hospital with her anytime soon. She's been sleeping for the last 4 hours and we haven't heard anything from her at this point. I pray she's on the mend and I'm not torn between my two sick girls again.
They also took blood and urine from Sadie to look for anything that would explain why she is always so tired. Nothing came back positive and they felt that she would improve with time. Sadie was very unimpressed with the nurse for taking her blood. She sat completely still until they poked her, then she was offended! I have an incredibly horrible nervous reaction. I laugh sometimes when I feel uncomfortable and am not sure what to do. I laugh at my kids while they're in pain sometimes and it's so terrible because I worry the nurses will think I actually find it funny, which I most certainly don't. I do feel a bit uneasy about how tired she is and hope we aren't missing something important. At the same time, she's 2 and often repeats something that she has said in the past. Perhaps she was tired 2 weeks ago, and simply decided it was fun to repeat often!
Nursey is feeling better and is back with Hope tonight. Hope is such a big fan and is happy to have her buddy back. We always relax more when we feel like Hope is with someone that knows her well and will pick up on anything that doesn't look right.
Please pray for Hope as her body is re-introduced to food. The fat is being removed from the breast milk and she remains on a fat free diet. Please pray that she tolerates this well and it's the solution we've been looking for. We are praying that she will transition well when we introduce fats once again. Please pray against any sickness in Hope's body and that Sadie will heal quickly and be able to see her sister once again. She was very upset that she wasn't allowed to go up and see her sister today. As for Shawn and me, we're just trying to keep on top of everything in our lives. We are in a fairly good routine, but still find piles of things we hope to get done at some point. I think everyone has those piles!
Sunday, 24 February 2013
Food in Sight
Things appear to be in order for Hope to begin receiving donor breast milk tomorrow. We are anxious to get her back to feeding, but are worried that the Chyle will come back. It will be so discouraging if we have to start all over again with pure TPN and need to wait another month to attempt feeding. Hope will receive the fat-free breast milk for 2 weeks before her regular feeds are introduced slowly and we see how she does. History with Hope should teach me to not expect an easy road, but for some reason I am truly hopeful this will be a success.
This weekend Shawn and I had the privilege of celebrating our 5 year anniversary. We had a wonderful evening out together and talked a lot about why we didn't go on more dates. It is such a gift to spend time with him and I am going to work harder at making sure we have that time more often. We also talked a lot about the dream vacation we plan to take when our little girl is more stable. We need a second honeymoon after the year we've had!
Hope continues to be a delight and smiles all the time. Today she sat on my lap playing with toys and smiling over at her Daddy. Shawn and I both commented that she is so ready to come home and if we can get her eating, that can be a reality!
Hope's sweet nursey is not feeling very well at the moment. Would you join us in praying that Rachelle would begin feeling better and get back to her old self quickly. She is such a huge blessing to our family and Hope really loves her. We sure miss not having her around all the time and care so much for her.
This weekend Shawn and I had the privilege of celebrating our 5 year anniversary. We had a wonderful evening out together and talked a lot about why we didn't go on more dates. It is such a gift to spend time with him and I am going to work harder at making sure we have that time more often. We also talked a lot about the dream vacation we plan to take when our little girl is more stable. We need a second honeymoon after the year we've had!
Hope continues to be a delight and smiles all the time. Today she sat on my lap playing with toys and smiling over at her Daddy. Shawn and I both commented that she is so ready to come home and if we can get her eating, that can be a reality!
Hope's sweet nursey is not feeling very well at the moment. Would you join us in praying that Rachelle would begin feeling better and get back to her old self quickly. She is such a huge blessing to our family and Hope really loves her. We sure miss not having her around all the time and care so much for her.
Thursday, 21 February 2013
He Gives and Takes Away
We always hold back excitement. This does not stem from a lack of faith. We believe that God is capable of healing Hope completely. He could put a whole heart in her body as she sleeps this very moment. We hold back because of experience. We have learned that getting excited and having that excitement shattered, is very painful.
This morning Hope was taken for her liver ultrasound in the morning. In the afternoon I was told that it does not appear that anything has changed. The portal vein is still clotted and there are no obvious signs of improvement. I guess I'm hoping it was a bad picture and they're not 100% sure, but they never said that.
I feel like we tasted the beauty of Hope's future for a short time, but had it taken away once again. We will continue to pray that her life will be miraculously spared and that we will have the privilege of watching her grow up.
I feel as though I've been in and out of the hospital for the last two weeks. When Hope first went into the hospital I postponed everything and assumed I would rebook at a later time. After 6 months I'm realizing that I need to go to the dentist and all the other doctors in life. I have been booking appointments that are past due and trying to arrange getting everywhere I need to be. It's not easy, but it is nice to cross something off my to do list. I need to learn to live life with a child in the hospital and another one at home.
They were hoping to start Hope on feeds today but with some support from the staff, I convinced them not to. Tomorrow a friend will be having blood tests done to make her eligible to donate milk to Hope. In 1-3 days those tests will be back and we'll be able to start feeding Hope once again. I would rather wait the 1-3 days and give Hope breast milk than start her on a feed I expect to cause problems. I am deeply hoping this works and we can get out of the hospital!
I believe that God gives to us, but He also takes away. I pray that He gives us Hope and does not take her away. At the same time I pray that He takes away fear and doubt in my life and gives me faith and patience. Some days I come to God asking for so many things. I wonder if He feels like Santa as I go through my wish list. Yet, I also have so many things to thank Him for. God has given us children, something many families dream of. God has provided for all of our needs; I am not hungry, naked or cold. Although I have so many days that I beg God for a miracle in Hope, I also thank Him for each day I have with her.
This morning Hope was taken for her liver ultrasound in the morning. In the afternoon I was told that it does not appear that anything has changed. The portal vein is still clotted and there are no obvious signs of improvement. I guess I'm hoping it was a bad picture and they're not 100% sure, but they never said that.
I feel like we tasted the beauty of Hope's future for a short time, but had it taken away once again. We will continue to pray that her life will be miraculously spared and that we will have the privilege of watching her grow up.
I feel as though I've been in and out of the hospital for the last two weeks. When Hope first went into the hospital I postponed everything and assumed I would rebook at a later time. After 6 months I'm realizing that I need to go to the dentist and all the other doctors in life. I have been booking appointments that are past due and trying to arrange getting everywhere I need to be. It's not easy, but it is nice to cross something off my to do list. I need to learn to live life with a child in the hospital and another one at home.
They were hoping to start Hope on feeds today but with some support from the staff, I convinced them not to. Tomorrow a friend will be having blood tests done to make her eligible to donate milk to Hope. In 1-3 days those tests will be back and we'll be able to start feeding Hope once again. I would rather wait the 1-3 days and give Hope breast milk than start her on a feed I expect to cause problems. I am deeply hoping this works and we can get out of the hospital!
I believe that God gives to us, but He also takes away. I pray that He gives us Hope and does not take her away. At the same time I pray that He takes away fear and doubt in my life and gives me faith and patience. Some days I come to God asking for so many things. I wonder if He feels like Santa as I go through my wish list. Yet, I also have so many things to thank Him for. God has given us children, something many families dream of. God has provided for all of our needs; I am not hungry, naked or cold. Although I have so many days that I beg God for a miracle in Hope, I also thank Him for each day I have with her.
Wednesday, 20 February 2013
Dangerous Hope
It's difficult to blog on the days that I know the entry is going to be long and difficult to communicate well. Please be patient as I try my best to bring you all into the meeting and up to date.
There is still some debate on what to do next with Hope's feeds. One team feels that Hope should have feeds introduced tomorrow. It would be done slowly and she would remain on TPN until she is able to tolerate full feeds. They plan to start her on a feed that she did not tolerate last time it was attempted. Shawn and I have our doubts that this is going to be effective. If a feed is started and the chylothorax returns, we have to start over again. Hope will go back on TPN for 4 weeks and after that is completed, we'll try another feed. Today we were told that if we were being pessimistic, but realistic, Hope could have another 3-4 months in the hospital. This was difficult to hear and extremely hard to accept. They plan to begin home TPN training with us, but this will take over 6 weeks and will take time to set up. It would get us home faster though.
The other opinion is that Hope should be put onto breast milk as she comes off TPN. Shawn and I feel that this is the better option. I am out of breast milk and the joint opinion of the staff involved, is that the milk bank would not be an option. After the breast milk is processed there, it would be missing some of the elements that Hope would need with her Chylothorax. So, we are exploring the use of some of our friends' breast milk. This is not an easy answer either and comes with a LOT of red tape. With Hope's future likely including a heart transplant and breast milk carrying many infections from a mother, anyone that donated would have to be tested for anything dangerous to Hope and this could take weeks to complete. As a result, it may not help us with our first attempt at introducing feeds. This is all still being debated and will take time, as it changes every day and is difficult to keep up with. I guess we'll find out tomorrow which option is going to be attempted first.
Hope will transition to the Complex Care team next week and will be followed by 2 Nurse Practitioners and a Pediatrician that do not change. This will give her extremely consistent care and will help keep track of all her complexities. Shawn and I feel strongly that this will make a positive impact in Hope's life. We are truly thankful for this opportunity and were able to meet one of the NP's today and feel that we'll be in good hands.
Now here is the difficult part. I feel as though someone has called us and told us that we've won a free cruise. We've all gotten those calls and you know it's too good to be true. We have been given some hope for our little Hope and are taking it with a grain of salt. We know that hope can be a dangerous thing, but are finding it difficult not to be excited.
When Hope's varices were greatly improved in Edmonton, the doctors were surprised. They did not make a huge deal of this and simply moved forward. Today we were informed that this is actually a miracle and does not make any sense. The varices should not have improved with only one treatment, it's just not possible and does not make any sense to them. The doctors are stunned and have trouble believing this has happened.
When the liver specialist met with me in Calgary, he explained that in very rare cases, the portal vein can improve. In less than 1% of people with portal vein hypertension, the body will naturally rebuild the portal vein and the issues will completely resolve without any intervention. We were told to not let ourselves think about it as it was nearly impossible. Today, the doctors have suggested that there is a possibility that this is happening. They are planning to do an ultrasound of Hope's liver to take a look and see what they can see. It is difficult to get a good look at the liver, and we truly need prayer that this test would be clear and they would be able to see exactly what's happening in the portal vein. If Hope is in the less than 1% that naturally correct the problem, it is truly a game changer.
If this has happened, Hope is not only a candidate for a heart transplant, but also a candidate for the Fontan. She would be able to have the Fontan (her 3rd surgery) at age 3-4 as she is supposed to. If this is our reality, there is no denying that God has truly done a miracle in her liver. Something we were told wasn't going to happen, may have happened. We know that like us, you are all wanting to jump up and down and announce that Hope's liver is cured. We don't recommend this stance just yet, as we need to confirm that this is really happening as we have no real evidence, other than the vast improvement in her varices. It would explain, however, why the varices and ascites have improved, but we need to wait and find out if this is true before we go crazy!
Hope's long term plan is not possible to speculate on until we have an answer with the liver. Please join us in praying for this miracle! Can you imagine if this was true?? One of our most major issues would be behind us. The liver surgery in Toronto would no longer be necessary. Hope's chance at a future would be greatly improved and her next steps would be possible. This kind of hope is dangerous in our roller coaster journey with Hope but we know, with God, all things are possible!
Please also join us in praying that by some complete miracle, Hope's body would tolerate her feeds. If she actually tolerated her feeds and the Chyle did not return, Hope could be home in 2 weeks. Most doctors feel that this is a pipe dream and never going to happen. Today I'm feeling adventurous and choosing to live on the edge a little. Can you imagine if we were home with Hope in 2 weeks? Ahhh, the very thought of it is like a vacation from our current reality. All we can do is continue to pray and ask for a miracle. At the same time, we know that God has a plan that is greater than our plan and we will believe He is good no matter what. Some days we don't understand why, but we believe in a God that loves us and has not promised that life would be all candy and rainbows. Today, I really Hope God has plans for Hope to return home though!
There is still some debate on what to do next with Hope's feeds. One team feels that Hope should have feeds introduced tomorrow. It would be done slowly and she would remain on TPN until she is able to tolerate full feeds. They plan to start her on a feed that she did not tolerate last time it was attempted. Shawn and I have our doubts that this is going to be effective. If a feed is started and the chylothorax returns, we have to start over again. Hope will go back on TPN for 4 weeks and after that is completed, we'll try another feed. Today we were told that if we were being pessimistic, but realistic, Hope could have another 3-4 months in the hospital. This was difficult to hear and extremely hard to accept. They plan to begin home TPN training with us, but this will take over 6 weeks and will take time to set up. It would get us home faster though.
The other opinion is that Hope should be put onto breast milk as she comes off TPN. Shawn and I feel that this is the better option. I am out of breast milk and the joint opinion of the staff involved, is that the milk bank would not be an option. After the breast milk is processed there, it would be missing some of the elements that Hope would need with her Chylothorax. So, we are exploring the use of some of our friends' breast milk. This is not an easy answer either and comes with a LOT of red tape. With Hope's future likely including a heart transplant and breast milk carrying many infections from a mother, anyone that donated would have to be tested for anything dangerous to Hope and this could take weeks to complete. As a result, it may not help us with our first attempt at introducing feeds. This is all still being debated and will take time, as it changes every day and is difficult to keep up with. I guess we'll find out tomorrow which option is going to be attempted first.
Hope will transition to the Complex Care team next week and will be followed by 2 Nurse Practitioners and a Pediatrician that do not change. This will give her extremely consistent care and will help keep track of all her complexities. Shawn and I feel strongly that this will make a positive impact in Hope's life. We are truly thankful for this opportunity and were able to meet one of the NP's today and feel that we'll be in good hands.
Now here is the difficult part. I feel as though someone has called us and told us that we've won a free cruise. We've all gotten those calls and you know it's too good to be true. We have been given some hope for our little Hope and are taking it with a grain of salt. We know that hope can be a dangerous thing, but are finding it difficult not to be excited.
When Hope's varices were greatly improved in Edmonton, the doctors were surprised. They did not make a huge deal of this and simply moved forward. Today we were informed that this is actually a miracle and does not make any sense. The varices should not have improved with only one treatment, it's just not possible and does not make any sense to them. The doctors are stunned and have trouble believing this has happened.
When the liver specialist met with me in Calgary, he explained that in very rare cases, the portal vein can improve. In less than 1% of people with portal vein hypertension, the body will naturally rebuild the portal vein and the issues will completely resolve without any intervention. We were told to not let ourselves think about it as it was nearly impossible. Today, the doctors have suggested that there is a possibility that this is happening. They are planning to do an ultrasound of Hope's liver to take a look and see what they can see. It is difficult to get a good look at the liver, and we truly need prayer that this test would be clear and they would be able to see exactly what's happening in the portal vein. If Hope is in the less than 1% that naturally correct the problem, it is truly a game changer.
If this has happened, Hope is not only a candidate for a heart transplant, but also a candidate for the Fontan. She would be able to have the Fontan (her 3rd surgery) at age 3-4 as she is supposed to. If this is our reality, there is no denying that God has truly done a miracle in her liver. Something we were told wasn't going to happen, may have happened. We know that like us, you are all wanting to jump up and down and announce that Hope's liver is cured. We don't recommend this stance just yet, as we need to confirm that this is really happening as we have no real evidence, other than the vast improvement in her varices. It would explain, however, why the varices and ascites have improved, but we need to wait and find out if this is true before we go crazy!
Hope's long term plan is not possible to speculate on until we have an answer with the liver. Please join us in praying for this miracle! Can you imagine if this was true?? One of our most major issues would be behind us. The liver surgery in Toronto would no longer be necessary. Hope's chance at a future would be greatly improved and her next steps would be possible. This kind of hope is dangerous in our roller coaster journey with Hope but we know, with God, all things are possible!
Please also join us in praying that by some complete miracle, Hope's body would tolerate her feeds. If she actually tolerated her feeds and the Chyle did not return, Hope could be home in 2 weeks. Most doctors feel that this is a pipe dream and never going to happen. Today I'm feeling adventurous and choosing to live on the edge a little. Can you imagine if we were home with Hope in 2 weeks? Ahhh, the very thought of it is like a vacation from our current reality. All we can do is continue to pray and ask for a miracle. At the same time, we know that God has a plan that is greater than our plan and we will believe He is good no matter what. Some days we don't understand why, but we believe in a God that loves us and has not promised that life would be all candy and rainbows. Today, I really Hope God has plans for Hope to return home though!
Tuesday, 19 February 2013
Genius Convention Take 2
Hope had another good day. Not much is changing with her care at the moment. The doctors have decided to finish Hope's TPN schedule on Thursday. At that point, they are hoping to start introducing breast milk and see how she does. We are praying that there are no problems and we're able move forward and get this little lady home!
This afternoon I sat with the physiotherapist and worked with Hope. We are working to have her sit up and develop her core strength. She has a long way to go and it can be frustrating. At the same time, I see progress in small areas and feel encouraged. Some days it's hard to imagine that Hope will grow up and run around with Sadie.
Tomorrow at 1pm Shawn and I will be sitting down with the hematologist, cardiologist x2, pediatrician, GI doctor, nutritionist and a few others. They are hoping to video conference in Dr. Kantor from Edmonton, but are skeptical that his schedule will allow this. We are praying this miracle happens, it would bring a doctor into the meeting that believes our daughter has a future. This meeting will lay out a care plan for Hope and decide what is next for her. These meetings can be very overwhelming and at times discouraging. Please pray for Shawn and I as we prepare to absorb a lot of information all at once.
We are entering a difficult parenting stage with Sadie. She has always been a very easy going and obedient child, and she is starting to have some interesting moments. We need wisdom as we work at finding ways to have her obey us and remain patient. We also need to find a way to get her to eat dinner. Each night we sit down as a family and it seems to be a non-stop fight to get her to eat and sit with us. We're both so tired from the stress of Hope that we don't have the energy to deal with Sadie's behaviour. We want to raise our girls well and worry that our focus on Hope is negatively affecting Sadie. After a bout of poor behaviour, Sadie will turn around and be the wonderful little girl we've raised for 2.5 years and we wonder how to make that girl stay!
Thank you for continuing to pray for our family. I am still adjusting to being back in Calgary. There are moments in the day with Hope that I stop and think, I get to go home when I leave here today! It's always wonderful to end my day with Shawn and Sadie and to know that I'll be seeing Hope in the morning too. I try not to focus on getting Hope home constantly, it makes it difficult when things are delayed. On the other hand, it's such an incredible thought and a dream that sneaks into my mind often.
This afternoon I sat with the physiotherapist and worked with Hope. We are working to have her sit up and develop her core strength. She has a long way to go and it can be frustrating. At the same time, I see progress in small areas and feel encouraged. Some days it's hard to imagine that Hope will grow up and run around with Sadie.
Tomorrow at 1pm Shawn and I will be sitting down with the hematologist, cardiologist x2, pediatrician, GI doctor, nutritionist and a few others. They are hoping to video conference in Dr. Kantor from Edmonton, but are skeptical that his schedule will allow this. We are praying this miracle happens, it would bring a doctor into the meeting that believes our daughter has a future. This meeting will lay out a care plan for Hope and decide what is next for her. These meetings can be very overwhelming and at times discouraging. Please pray for Shawn and I as we prepare to absorb a lot of information all at once.
We are entering a difficult parenting stage with Sadie. She has always been a very easy going and obedient child, and she is starting to have some interesting moments. We need wisdom as we work at finding ways to have her obey us and remain patient. We also need to find a way to get her to eat dinner. Each night we sit down as a family and it seems to be a non-stop fight to get her to eat and sit with us. We're both so tired from the stress of Hope that we don't have the energy to deal with Sadie's behaviour. We want to raise our girls well and worry that our focus on Hope is negatively affecting Sadie. After a bout of poor behaviour, Sadie will turn around and be the wonderful little girl we've raised for 2.5 years and we wonder how to make that girl stay!
Thank you for continuing to pray for our family. I am still adjusting to being back in Calgary. There are moments in the day with Hope that I stop and think, I get to go home when I leave here today! It's always wonderful to end my day with Shawn and Sadie and to know that I'll be seeing Hope in the morning too. I try not to focus on getting Hope home constantly, it makes it difficult when things are delayed. On the other hand, it's such an incredible thought and a dream that sneaks into my mind often.
Monday, 18 February 2013
Memories and Toddler Moments
On Saturday we went over to the hospital as a family. Sadie did well for hours but eventually needed a break from the hospital. Sadie and I made a run to Superstore and Dollarama to get her out for a bit. We were not able to find something we'd been looking for and decided to head over to London Drugs. I never thought anything of it until I walked into the mall holding Sadie's hand. The last time I had been in that mall was on November 16, 2011. I had walked in with Sadie and Shawn to have an ultrasound and find out if our little baby was a girl or a boy. We walked out heart broken and crushed, our baby girl had a heart that was broken. The emotions flooded back as I walked through the mall and I was in awe of how much more we'd been through than I ever imagined possible. I cannot help but give glory to God. This is not possible without the Lord as no one is strong enough to take so much.
We headed back to the hospital after dropping off our groceries and spent the rest of the day at the hospital as a family. It's amazing to be together as a family, I just wish it could be in our own home. I hold onto the hope that it will happen sometime soon.
This morning the plan was the same, to head to the hospital as a family. I have no idea what happened to Sadie through the night, but she woke up a little naughty. She kept insisting that she had to pee and wanted to sit on the toilet forever. We needed to leave and eventually had to pin her down and dress her. She proceeded to pee her pants as soon as we had her coat and shoes on. It was not a relaxing or enjoyable start to 'Family Day'.
Once we arrived at the hospital Sadie was more herself and the rest of the day went well. The doctors came to speak to us about Hope. It sounds like the meeting with all the important doctors should be happening on Wednesday or Thursday. They drew blood this afternoon, that has to be done peripherally and cannot be taken from her line. We asked for the nurses from ICU to come up and draw it from her head. This is often a better place to draw from Hope and can be done with one poke. They agreed and the blood was drawn with one poke.
It sounds like Hope will finish her round of pure TPN later this week. Once that is finished, they plan to start giving Hope breast milk from the milk bank here in Calgary. It will be spun and all the fat will be removed from it initially as her body is still not able to have any fat. This is because of the Chylothorax in her lungs. Hopefully this is successful and we have Hope eating right away and are able to get her home!
In the late afternoon we got some results from the blood work. Hope's platelets have been very low for a long time. Today they came back perfect and her electrolytes are perfect as well! It appears her body is much happier at the moment and she is doing well. She has lost some weight since returning to Calgary and is at her weight from July. We worry that she'll continue to lose once on breast milk and hope that she'll be able to get back on higher fat feeds quickly. She's been 11 pounds for so long, I feel like we'll need to have a party when she hits 12 pounds!
Another week begins tomorrow, I always hate when Shawn has to go back to work and I have to be alone at the hospital. I just want my girls at home so we can greet Shawn when he gets in from work each day. Please continue to pray that this happens soon!
We headed back to the hospital after dropping off our groceries and spent the rest of the day at the hospital as a family. It's amazing to be together as a family, I just wish it could be in our own home. I hold onto the hope that it will happen sometime soon.
This morning the plan was the same, to head to the hospital as a family. I have no idea what happened to Sadie through the night, but she woke up a little naughty. She kept insisting that she had to pee and wanted to sit on the toilet forever. We needed to leave and eventually had to pin her down and dress her. She proceeded to pee her pants as soon as we had her coat and shoes on. It was not a relaxing or enjoyable start to 'Family Day'.
Once we arrived at the hospital Sadie was more herself and the rest of the day went well. The doctors came to speak to us about Hope. It sounds like the meeting with all the important doctors should be happening on Wednesday or Thursday. They drew blood this afternoon, that has to be done peripherally and cannot be taken from her line. We asked for the nurses from ICU to come up and draw it from her head. This is often a better place to draw from Hope and can be done with one poke. They agreed and the blood was drawn with one poke.
It sounds like Hope will finish her round of pure TPN later this week. Once that is finished, they plan to start giving Hope breast milk from the milk bank here in Calgary. It will be spun and all the fat will be removed from it initially as her body is still not able to have any fat. This is because of the Chylothorax in her lungs. Hopefully this is successful and we have Hope eating right away and are able to get her home!
In the late afternoon we got some results from the blood work. Hope's platelets have been very low for a long time. Today they came back perfect and her electrolytes are perfect as well! It appears her body is much happier at the moment and she is doing well. She has lost some weight since returning to Calgary and is at her weight from July. We worry that she'll continue to lose once on breast milk and hope that she'll be able to get back on higher fat feeds quickly. She's been 11 pounds for so long, I feel like we'll need to have a party when she hits 12 pounds!
Another week begins tomorrow, I always hate when Shawn has to go back to work and I have to be alone at the hospital. I just want my girls at home so we can greet Shawn when he gets in from work each day. Please continue to pray that this happens soon!
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