Your word is a lamp
to guide my feet
to guide my feet
and a light for my path.
Psalm 119:105
Thursday, September 30, 2010
Feeds, Doctors, and Sunsets
Where to start? I have had alot of ideas today of what I wanted to write but I know that realistically speaking, there is only time to stick to the bare bones. We are tired. And worn. It surprises me that it's still been such a tough week because the nights are fantastic! We are starting to recover physically because we have now had respite for three nights now! I am finally getting over my cold. The paperwork however, is a big headache. We are really looking forward to having this stuff worked out soon. Dave and I have had time (barely) to talk about only the things that absolutely have to get done. I am so thankful that Dave has been able to spend several hours on figuring out payroll today. (including several phone calls to other families who are experienced in this). I just can't seem to wrap my brain around numbers and tax forms when I feel like the house is still crashing down around me.
Feedings have not gone well lately. She is finally resting but for most of the day, she has needed to eat every hour and often every 15 minutes. She sucks, then pulls away and cries. She ate roughly between 5 - 15 ml each feeding. Then we reheat the milk and try again. Feeding Rachel is definetly a full-time job. We are hoping this is just because of her cold and that things change soon. Tricia, you asked about a feeding tube. I think that this is something we would do only if absolutely necessary. That's my understanding anyway. We are planning to try a medication for reflux - she may be having pain with swallowing because of this. It will take about 5 days before we might notice a real difference.
This morning we had an apointment at the Children's- with our Cardiologist, a Pediatrician, a Nutritionist, and a nurse in Cardiology. I wish you could have seen that room - and how these people respond and light up around Rachel. Rachel was wooing everyone with her smiles. She was so awake and happy. (I wish that had carried over into the rest of the day!) We talked about alot of things....Here's a summary:
1. We haven't heard back from Toronto yet. We sent off the echos for another opinion on her heart. He may want more tests to be done, possibly an MRI. One was done in utero, but it was hard to get good images. We have hestitated on doing another one because it involves sedation and an IV. Her hands are so tiny and overall, she has seemed so fragile. We still don't know if the benefits are worth it, but we are leaning more towards doing it now simply because we are curious to know more about her heart and what it might do in the future. One option to try first is to wrap her very tightly and hope she doesn't move. We might try this first. However, she would still need the IV.
2. Some of you might find this interesting: Edmonton is rated one of the best centres for heart surgery in the world. Toronto and Boston are on par surgically speaking. Our Doctor has practised in Toronto and I understood that she had also done some work in Boston - she is very familiar with both centres. And there are few places in Canada and even the world that have a place like the Children's Hospital here in Calgary. We feel very fortunate to have such great care.
3. We discussed her diet at length - trying to figure out ways to help her go longer between feeds. There doesn't seem to be one right now. Please ask God to give us endurance. This is the one thing that is the most discouraging for us right now.
4. Rachel is now 6 lbs and 6 ounces! And....drumroll please...her oxygen levels are 79%! She was 78% at birth. The only guess is that the collateral arteries that have been closing - have caused other ones to open up. If that confuses you, you are not the only one. But feel free to ask me more about that.
5. Some of you have asked, "Why don't we give her oxygen? Would this not help her to grow and develop to her full mental and physical capacity?" This is a good question. Our Doctor had a much longer and more detailed answer for this but basically this is what she said (I think!) : Her heart is mixing oxygenated and de-oxygenated blood. Giving more oxygen would not make much difference in this case,as it would just become mixed again. Also, whatever developmental differences she has now, have been there from the start - and not because of lack of oxygen.
6. We were strongly advised to get flu shots, particularly Rachel. They are especially concerned about a certain virus - ahh, what is the name now?? and it usually surfaces in December. They say that if Rachel gets this virus, she will get very very sick. Most of us just get sick - we hate it - but we get over it. I already know 4 children in Hospital (with underlying problems) because they have caught a virus. For them, a virus can mean death. Please pray for these families, and us as we enter the flu season. That reminds me. Ryder, the little boy I asked you to pray for, is home again. He was in Hospital because he caught a virus. He is okay now but the family is nervous about flu season. They feel like they are living in a bubble.
The Wailin Jennys song I added to the blog player is in honor of a dear friend who stopped by here on the way to B.C. Paul and Sandi Mutch, I am so glad you could meet Rachel for a little bit. And celebrate your birthday! Glad too that we could see their pictures of their recent trip to South America. I have no words for the beauty of what they saw. Absolutely incredible. This world still holds so much beauty.
Last night I saw something that literally took my breath away. I had been feeling down - after a certain conversation I had just had, and I was driving away from Superstore when I turned my head to check for traffic - and then I saw the sky. If you could hear my inner thoughts, it would be a Gasp (almost painful for the beauty of it). I wanted to stay right there in the middle of the road. I felt the most incredible sense of wonder - it was as if the curtains were pulled back and I could see heaven. It was pure agony to turn and face in the other direction - and drive towards the darkness.
This reminded me of a book called "A Grace Disguised"that I read not long ago. It was written by a man who had lost his wife and mother and daughter in one car accident. He dreams of a setting sun and desperate to escape the coming darkness, he runs west trying to capture the sun's warmth and light. Later he learned of a poem (through a friend) by John Donne - and it points to the fact that though east and west appear as opposites, if we follow one or the other long enough and far enough - they do in time, come together.
He writes, "Later my sister Diane, told me that the quickest way for anyone to reach the sun and the light of day is not to run west, chasing after the setting sun, but to head east, plunging into the darkness until one comes to the sunrise...Since I knew that darkness was inevitable and unavoidable, I decided from that point on to walk into the darkness rather than try to outrun it, to let my experience of loss take me on a journey wherever it would lead...I chose to turn toward the pain, however falteringly, and to yield to the loss, though I had no idea at the time what that would mean..."
Ha!! So much for sticking to bare bones! I want to write more but I hope that encourages someone to go pick up the book and read it for themselves! Good-night!
Feedings have not gone well lately. She is finally resting but for most of the day, she has needed to eat every hour and often every 15 minutes. She sucks, then pulls away and cries. She ate roughly between 5 - 15 ml each feeding. Then we reheat the milk and try again. Feeding Rachel is definetly a full-time job. We are hoping this is just because of her cold and that things change soon. Tricia, you asked about a feeding tube. I think that this is something we would do only if absolutely necessary. That's my understanding anyway. We are planning to try a medication for reflux - she may be having pain with swallowing because of this. It will take about 5 days before we might notice a real difference.
This morning we had an apointment at the Children's- with our Cardiologist, a Pediatrician, a Nutritionist, and a nurse in Cardiology. I wish you could have seen that room - and how these people respond and light up around Rachel. Rachel was wooing everyone with her smiles. She was so awake and happy. (I wish that had carried over into the rest of the day!) We talked about alot of things....Here's a summary:
1. We haven't heard back from Toronto yet. We sent off the echos for another opinion on her heart. He may want more tests to be done, possibly an MRI. One was done in utero, but it was hard to get good images. We have hestitated on doing another one because it involves sedation and an IV. Her hands are so tiny and overall, she has seemed so fragile. We still don't know if the benefits are worth it, but we are leaning more towards doing it now simply because we are curious to know more about her heart and what it might do in the future. One option to try first is to wrap her very tightly and hope she doesn't move. We might try this first. However, she would still need the IV.
2. Some of you might find this interesting: Edmonton is rated one of the best centres for heart surgery in the world. Toronto and Boston are on par surgically speaking. Our Doctor has practised in Toronto and I understood that she had also done some work in Boston - she is very familiar with both centres. And there are few places in Canada and even the world that have a place like the Children's Hospital here in Calgary. We feel very fortunate to have such great care.
3. We discussed her diet at length - trying to figure out ways to help her go longer between feeds. There doesn't seem to be one right now. Please ask God to give us endurance. This is the one thing that is the most discouraging for us right now.
4. Rachel is now 6 lbs and 6 ounces! And....drumroll please...her oxygen levels are 79%! She was 78% at birth. The only guess is that the collateral arteries that have been closing - have caused other ones to open up. If that confuses you, you are not the only one. But feel free to ask me more about that.
5. Some of you have asked, "Why don't we give her oxygen? Would this not help her to grow and develop to her full mental and physical capacity?" This is a good question. Our Doctor had a much longer and more detailed answer for this but basically this is what she said (I think!) : Her heart is mixing oxygenated and de-oxygenated blood. Giving more oxygen would not make much difference in this case,as it would just become mixed again. Also, whatever developmental differences she has now, have been there from the start - and not because of lack of oxygen.
6. We were strongly advised to get flu shots, particularly Rachel. They are especially concerned about a certain virus - ahh, what is the name now?? and it usually surfaces in December. They say that if Rachel gets this virus, she will get very very sick. Most of us just get sick - we hate it - but we get over it. I already know 4 children in Hospital (with underlying problems) because they have caught a virus. For them, a virus can mean death. Please pray for these families, and us as we enter the flu season. That reminds me. Ryder, the little boy I asked you to pray for, is home again. He was in Hospital because he caught a virus. He is okay now but the family is nervous about flu season. They feel like they are living in a bubble.
The Wailin Jennys song I added to the blog player is in honor of a dear friend who stopped by here on the way to B.C. Paul and Sandi Mutch, I am so glad you could meet Rachel for a little bit. And celebrate your birthday! Glad too that we could see their pictures of their recent trip to South America. I have no words for the beauty of what they saw. Absolutely incredible. This world still holds so much beauty.
Last night I saw something that literally took my breath away. I had been feeling down - after a certain conversation I had just had, and I was driving away from Superstore when I turned my head to check for traffic - and then I saw the sky. If you could hear my inner thoughts, it would be a Gasp (almost painful for the beauty of it). I wanted to stay right there in the middle of the road. I felt the most incredible sense of wonder - it was as if the curtains were pulled back and I could see heaven. It was pure agony to turn and face in the other direction - and drive towards the darkness.
This reminded me of a book called "A Grace Disguised"that I read not long ago. It was written by a man who had lost his wife and mother and daughter in one car accident. He dreams of a setting sun and desperate to escape the coming darkness, he runs west trying to capture the sun's warmth and light. Later he learned of a poem (through a friend) by John Donne - and it points to the fact that though east and west appear as opposites, if we follow one or the other long enough and far enough - they do in time, come together.
He writes, "Later my sister Diane, told me that the quickest way for anyone to reach the sun and the light of day is not to run west, chasing after the setting sun, but to head east, plunging into the darkness until one comes to the sunrise...Since I knew that darkness was inevitable and unavoidable, I decided from that point on to walk into the darkness rather than try to outrun it, to let my experience of loss take me on a journey wherever it would lead...I chose to turn toward the pain, however falteringly, and to yield to the loss, though I had no idea at the time what that would mean..."
Ha!! So much for sticking to bare bones! I want to write more but I hope that encourages someone to go pick up the book and read it for themselves! Good-night!
Monday, September 27, 2010
Tonight we Sleep!
We have exciting news! We have people to do in-home respite now! Starting tonight, someone will take care of Rachel 5 nights a week. I am so excited. Last night was awful. Rachel has a bad cold and was awake and unhappy for most of the night. Dave was awake till 4:30 with her and I took over then. Poor little girl. It is really tough to watch her try to drink and cough and cry. She is so miserable.
Do you want to know something incredibly beautiful though? One of our new Respite workers had a dream about Rachel before she heard about her! She had dreamt she was holding a baby - her husband said that she never dreams about babies. A day or two later they were over at our friend's place. Our pastor friend told them about our need for respite and right away she sensed that Rachel was the baby she had dreamt about. I nearly cried when I heard that. Thank-you God! No matter how long they decide to work for us, we know that they are an answer to prayer.
I am noticing that it is getting more difficult to carry Rachel around...and she does SO love to be held alot. I don't think she is that much heavier, but she has grown alot in length and she doesn't hold her head up. Speaking of growing longer, I have a question for my Calgary friends. Does anyone have Girl newborn/ 0-3 month sleepers that I can borrow? (She doesn't grow that fast so we'll probably have them for awhile) I borrowed alot for Abigail so I don't have much under 6 months. It would be best if you were not expecting to use them again. I will try my best to keep them in great shape, but you know how things play out in real life. Thank-you:)
Do you want to know something incredibly beautiful though? One of our new Respite workers had a dream about Rachel before she heard about her! She had dreamt she was holding a baby - her husband said that she never dreams about babies. A day or two later they were over at our friend's place. Our pastor friend told them about our need for respite and right away she sensed that Rachel was the baby she had dreamt about. I nearly cried when I heard that. Thank-you God! No matter how long they decide to work for us, we know that they are an answer to prayer.
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| Last night Ethan asked to hold Rachel before going to bed. I just had to take this picture. |
I am noticing that it is getting more difficult to carry Rachel around...and she does SO love to be held alot. I don't think she is that much heavier, but she has grown alot in length and she doesn't hold her head up. Speaking of growing longer, I have a question for my Calgary friends. Does anyone have Girl newborn/ 0-3 month sleepers that I can borrow? (She doesn't grow that fast so we'll probably have them for awhile) I borrowed alot for Abigail so I don't have much under 6 months. It would be best if you were not expecting to use them again. I will try my best to keep them in great shape, but you know how things play out in real life. Thank-you:)
Saturday, September 25, 2010
Pray for Ryder
I would like to ask you to pray for a little boy. He is 2 months old and he has hypoplastic left heart syndrome. (he was born with half a heart) His grandma is Ethan's playschool teacher. I met her when I registered Ethan for school. I was 8 months pregnant with Rachel and I think Ryder was due the next month. His first surgery at a few days of age, went remarkably well, and everything was looking well. A few days ago, when Dave was picking Ethan up from school, she mentioned that her grandson was in the Hospital. Dave doesn't remember the details but she had sounded quite concerned. He has an older sister who is four I think. I can't stop thinking about them and wondering how they are doing. The unknowns, the hope that he will pull through, an older sibling who wonders what is happening to her baby brother, and why her parents are so sad. I hurt for them and as I hold our little girl, my heart aches for us too.
About the cold situation in our house, Ethan and Abigail are better. But now Rachel is sick. It's so hard to hear her cough. Tonight a friend is coming to do respite. We hope she can do this once a week! I'll have to try not to think of Rachel (not that I don't trust our friend with her) but you know how us moms are - it's hard to put aside the feeling of responsibility sometimes and completely rest. (especially when that child is sick)
It was so nice to see the sun again in Calgary! And the Autumn leaves are beautiful. I hope those of you in Calgary were able to take advantage of the good weather today. I took Abigail to the zoo this morning for Princess Day (she was pretty thrilled about wearing her Princess costume) and to Costco for lunch. Dave took the older kids for a walk to Superstore later in the day. I even sat outside and watched Ethan ride his bike for a bit. It was the kind of day we haven't had in a long time and I am so thankful for the beauty that was in it.
About the cold situation in our house, Ethan and Abigail are better. But now Rachel is sick. It's so hard to hear her cough. Tonight a friend is coming to do respite. We hope she can do this once a week! I'll have to try not to think of Rachel (not that I don't trust our friend with her) but you know how us moms are - it's hard to put aside the feeling of responsibility sometimes and completely rest. (especially when that child is sick)
It was so nice to see the sun again in Calgary! And the Autumn leaves are beautiful. I hope those of you in Calgary were able to take advantage of the good weather today. I took Abigail to the zoo this morning for Princess Day (she was pretty thrilled about wearing her Princess costume) and to Costco for lunch. Dave took the older kids for a walk to Superstore later in the day. I even sat outside and watched Ethan ride his bike for a bit. It was the kind of day we haven't had in a long time and I am so thankful for the beauty that was in it.
Wednesday, September 22, 2010
Four Months Old
The last few days have been really tough - physically and mentally. Ethan and Abigail have colds. Rachel is fussy and wanting to be held all the time. The longest nap she had today was probably 30 minutes. Even the big orange hospital soother that usually works, isn't. Dave and I have to work out schedules, appointments, respite issues etc...and it feels likes I am just spinning my wheels and not getting anything done. I feel like I am really getting a taste now of what it is like to have three kids! Rachel used to sleep all the time and now she's awake for most of the day - it is quite the change. That's why it was SO GOOD for us to get out for a few hours tonight to celebrate Dave's 33rd birthday. Friends watched the two older kids and we took Rachel out for dinner at Tony Roma's. Thanks guys!
I dressed Rachel in one of Abigail's dresses (that she wore at two weeks old and probably grew out of a week later) I remember going through Abigail's baby clothes when I was 8 months pregnant - and picking up this particular dress. I cried because I didn't know if Rachel would ever be able to wear it - and now she is! Happy Birthday to Daddy! ....and Happy 4th month birthday to Rachel!
I dressed Rachel in one of Abigail's dresses (that she wore at two weeks old and probably grew out of a week later) I remember going through Abigail's baby clothes when I was 8 months pregnant - and picking up this particular dress. I cried because I didn't know if Rachel would ever be able to wear it - and now she is! Happy Birthday to Daddy! ....and Happy 4th month birthday to Rachel!
Monday, September 20, 2010
Overdue pictures
I thought this blog was overdue for some pictures. Here are a few...
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| Holding head up in Sling (Going for a walk with staff at Hospice) |
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| Cooing and smiling |
Sunday, September 19, 2010
Footprints
We all made it to church this morning! Amazing! I think it has been 5 weeks since we have all made it there. (holidays, colds etc..) After church, we ink stamped all our kids feet and added their footprints to the others on a nursery wall. We had always meant to do this with the older two but time kind of flew away on us. I like that all of their prints are close to each other. And one day....when Rachel is gone and my heart aches with missing her, I will look at that wall and remember this day. Her footprints will remind us that she really was here - that she made her imprint on the world and on our hearts.
Yesterday I made a quick trip to the grocery store. I admit, I am definetly a CBC girl - our dial rarely moves from it, but this time I decided to chance the Christian radio channel. I heard the announcer talking about some musician who just had their third child. It sounded so happy and I had this little stab of jealousy. I wished so desperately in that one moment that Rachel was healthy and it was a cruel reminder of what we had wanted life to hold for us. I moved to turn it off but then I heard the words "unfortunately he was diagnosed with a heart malformation called Hypoplastic Left Heart Syndrome. Right now he is in surgery fighting for his life." (one the the things Rachel has is hypoplastic right heart)
Suddenly I wasn't jealous. Instead I was weeping. Just a few extra words made the difference. And I thought a bit about jealousy. How so often I think I know how to paint the picture of a person's life - and yet I really have no idea what forms of suffering others are secretly going through or will go through. Some people do seem to get hit by unbelievable suffering again and again - life is so unfair. Still, none of us are exempt. God, help me to have your perspective. Help me today, to choose thankfulness instead of bitterness. I want my life to be ruled by Love, not fear. This is so hard sometimes. You know how weak I am.
Shortly after that announcement, this song by Rich Mullins came on. I love the words. I think Rich Mullins was killed in a car accident not that long ago, right? When I was in high school, a teacher gave us all a cassette tape of Rich Mullins. At the time this music wasn't exacly the 'coolest' but I secretly listened to his music over and over again and it got me through some tough times. Sometimes we have no idea what a difference our 'little' gifts can make.
Thank-you God - You and your plans for us are bigger than anything we are facing right now or will ever face. Your love is deeper, more true and loyal than we can imagine.
Rich Mullins "If I Stand"
There's more that rises in the morning than the sun
And more that shines in the night than just the moon
It's more than just this fire here that keeps me warm
In a shelter that is larger than this room
And there's a loyalty that's deeper than mere sentiments
And a music higher than the songs that I can sing
The stuff of Earth competes for the allegiance
I owe only to the giver of all good things
So if I stand let me stand on the promise
That you will pull me through
And if I can't, let me fall on the grace
That first brought me to You
And if I sing let me sing for the joy
That has born in me these songs
And if I weep let it be as a man
Who is longing for his home
There's more that dances on the prairies than the wind
More that pulses in the ocean than the tide
There's a love that is fiercer than the love between friends
More gentle than a mother's when her baby's at her side
Yesterday I made a quick trip to the grocery store. I admit, I am definetly a CBC girl - our dial rarely moves from it, but this time I decided to chance the Christian radio channel. I heard the announcer talking about some musician who just had their third child. It sounded so happy and I had this little stab of jealousy. I wished so desperately in that one moment that Rachel was healthy and it was a cruel reminder of what we had wanted life to hold for us. I moved to turn it off but then I heard the words "unfortunately he was diagnosed with a heart malformation called Hypoplastic Left Heart Syndrome. Right now he is in surgery fighting for his life." (one the the things Rachel has is hypoplastic right heart)
Suddenly I wasn't jealous. Instead I was weeping. Just a few extra words made the difference. And I thought a bit about jealousy. How so often I think I know how to paint the picture of a person's life - and yet I really have no idea what forms of suffering others are secretly going through or will go through. Some people do seem to get hit by unbelievable suffering again and again - life is so unfair. Still, none of us are exempt. God, help me to have your perspective. Help me today, to choose thankfulness instead of bitterness. I want my life to be ruled by Love, not fear. This is so hard sometimes. You know how weak I am.
Shortly after that announcement, this song by Rich Mullins came on. I love the words. I think Rich Mullins was killed in a car accident not that long ago, right? When I was in high school, a teacher gave us all a cassette tape of Rich Mullins. At the time this music wasn't exacly the 'coolest' but I secretly listened to his music over and over again and it got me through some tough times. Sometimes we have no idea what a difference our 'little' gifts can make.
Thank-you God - You and your plans for us are bigger than anything we are facing right now or will ever face. Your love is deeper, more true and loyal than we can imagine.
Rich Mullins "If I Stand"
There's more that rises in the morning than the sun
And more that shines in the night than just the moon
It's more than just this fire here that keeps me warm
In a shelter that is larger than this room
And there's a loyalty that's deeper than mere sentiments
And a music higher than the songs that I can sing
The stuff of Earth competes for the allegiance
I owe only to the giver of all good things
So if I stand let me stand on the promise
That you will pull me through
And if I can't, let me fall on the grace
That first brought me to You
And if I sing let me sing for the joy
That has born in me these songs
And if I weep let it be as a man
Who is longing for his home
There's more that dances on the prairies than the wind
More that pulses in the ocean than the tide
There's a love that is fiercer than the love between friends
More gentle than a mother's when her baby's at her side
Thursday, September 16, 2010
Out of Sorts
Thank-you everyone for reading these updates and for keeping us in your thoughts!! We also want to say Thank-you to an anonymous Giver - we received your generous money gift in the church offering two Sundays ago! We have been blessed by all of you in so many ways. Thank-you.
We are all feeling out of sorts this week. Although living at the Hospice has given us more rest - we are finding scheduling a challenge. With Ethan starting playschool this week, dentist apointments, Dave's work and one vehicle, we have been a bit frazzled. Living out of two homes is crazy sometimes, although we are so incredibly thankful for the Hospice! This morning, Dave brought us all home for the day before going to work. Usually the kids seem happy about being home - but I can tell that the kids also feel out of sorts - they are probably picking up on our stress.
Rachel is doing very well. Sadly, the new formula mix is not helping her to go longer between feeds. And we think it might be making her more constipated. So we are going back to the original mix. Good news is that we have been approved for 50 hours of night respite care. We were really surprised and thankful to get this much! The downside is that is has turned out to be more complicated than we thought. This means doing payroll, and possibly paying more out of our pocket to make it worthwhile for someone to consider taking the job. We have found a few people who are very interested but we haven't had time to get the details worked out yet.
Rachel has been so responsive to us. The staff have taken her into the Multi-sensory room at the Hospice a few times - it is a room to stimulate the senses (intended for kids with developmental challenges) - with lava lights, vibrating tables, a water bed etc... Rachel really loves the lights. She has also been doing a bit of tummy time!! She is even lifting her head a little bit from this position. It's great seeing her do these things! She is so tiny, newborn size and yet she is developing in her own way - and looking like an older baby.
Dave's parents were just out for five days. They lived at our house and visited us at the Hospice. It was wonderful having them here! One huge gift they gave us was a birthday party for Abigail. (it's actually her third party but this time she had some little friends her age - three sisters that she is quite enthralled with!) They cleaned the house and got everything ready, and even made little take-home bags for the kids.
I think my cold is finally on its way out - three weeks later. I slept last night for the first time. Sleep makes such a difference! Two more nights before we are back on full-duty Rachel care. We will be home Saturday morning.
We are all feeling out of sorts this week. Although living at the Hospice has given us more rest - we are finding scheduling a challenge. With Ethan starting playschool this week, dentist apointments, Dave's work and one vehicle, we have been a bit frazzled. Living out of two homes is crazy sometimes, although we are so incredibly thankful for the Hospice! This morning, Dave brought us all home for the day before going to work. Usually the kids seem happy about being home - but I can tell that the kids also feel out of sorts - they are probably picking up on our stress.
Rachel is doing very well. Sadly, the new formula mix is not helping her to go longer between feeds. And we think it might be making her more constipated. So we are going back to the original mix. Good news is that we have been approved for 50 hours of night respite care. We were really surprised and thankful to get this much! The downside is that is has turned out to be more complicated than we thought. This means doing payroll, and possibly paying more out of our pocket to make it worthwhile for someone to consider taking the job. We have found a few people who are very interested but we haven't had time to get the details worked out yet.
Rachel has been so responsive to us. The staff have taken her into the Multi-sensory room at the Hospice a few times - it is a room to stimulate the senses (intended for kids with developmental challenges) - with lava lights, vibrating tables, a water bed etc... Rachel really loves the lights. She has also been doing a bit of tummy time!! She is even lifting her head a little bit from this position. It's great seeing her do these things! She is so tiny, newborn size and yet she is developing in her own way - and looking like an older baby.
Dave's parents were just out for five days. They lived at our house and visited us at the Hospice. It was wonderful having them here! One huge gift they gave us was a birthday party for Abigail. (it's actually her third party but this time she had some little friends her age - three sisters that she is quite enthralled with!) They cleaned the house and got everything ready, and even made little take-home bags for the kids.
I think my cold is finally on its way out - three weeks later. I slept last night for the first time. Sleep makes such a difference! Two more nights before we are back on full-duty Rachel care. We will be home Saturday morning.
Saturday, September 11, 2010
Rainy Day
I just spoke with one of Rachel's palliative care doctors. We're going to increase the concentration of formula to water and hopefully this will help her to feel fuller longer. We are still feeding her roughly every two hours. It would be wonderful if this would give us better nights!
Ethan said something sweet yesterday. He and Abigail had bounded into our room, after having night snack downstairs. They both went over to Rachel, kissed her and stroked her head. Then Ethan said "She makes me want to take care of her forever". Such a good big brother.
Rachel has been fussier today. But I am hoping to get a little nap in yet this afternoon. This cold has really been hanging on. Grandma is with the two older kids at our house - Grandpa and Dave are doing some odds and end jobs at home as well. So it's just me and Rachel hanging out here at the Hospice for a few hours!
Ethan said something sweet yesterday. He and Abigail had bounded into our room, after having night snack downstairs. They both went over to Rachel, kissed her and stroked her head. Then Ethan said "She makes me want to take care of her forever". Such a good big brother.
Rachel has been fussier today. But I am hoping to get a little nap in yet this afternoon. This cold has really been hanging on. Grandma is with the two older kids at our house - Grandpa and Dave are doing some odds and end jobs at home as well. So it's just me and Rachel hanging out here at the Hospice for a few hours!
Thursday, September 9, 2010
Gift of More Time
I will be so glad when my cold is over! But boy, are we glad to hand Rachel over to the nurses at the end of the day and know that she will be well taken care of all night. Rachel is doing really well!! Amazingly well, in fact. She is no longer throwing up - the rice milk is doing it's job. She rarely coughs these days too. She isn't constipated anymore. She gained weight. She is now 6 lbs even! She has a layer of fat around her that she didn't have a short time ago. She is holding her head up a little bit! She is smiling and communicating with us a little too, making little sounds when we talk to her.
And her oxygen levels have stayed high! You may remember that her levels hovered around the 50-60 mark for most of the last 3 months and then suddenly shot up to 70. It is still in the low 70's. Our cardiologist said it might have something to do with other arteries going into the lungs - they may have expanded a bit to allow more flow. (not only are her pulmonary arteries abnormal but all the arteries going into her lungs and this kind of contracting or expanding is typical of this type of artery) She wasn't surprised by it but she said that perhaps we will have Rachel with us much longer than we first thought. This possibility used to scare us - we knew that the longer we had her, the harder the grief would be. Yet this time was different. Dave and I both were surprised at how GLAD we were to hear this. We feel like cheering this little girl on...This little girl who is so bravely living her life. (in Dave's mom's words) And we felt so happy about having her with us longer! This was really the first time this produced this kind of response in us and it took us a bit by surprise.
Our Cardiologist is planning to ask one of her colleagues in Toronto to look at the echocardiogram for us. It sounds like these echos can be pretty tricky to read, especially when the arteries/veins, heart structure etc..are as complicated as Rachel's. I appreciate our Doctor and her interest in finding out all she can about what is going on inside her heart. We are so glad both for her expertise and her caring manner. This applies to Rachel's whole support team. They seem so eager to figure out ways to help her.
So much has changed since those early days after Rachel was born. We used to think she would be gone or start deteriorating anytime and that thought affected every thought of the future, every plan. For example, I even wondered if I should put Ethan into playschool because our lives seems so topsy-turvy. We have lived away from home almost as much as we have been at home this summer. When others wanted to make plans a week or month down the road, we used to say "well, we will see how Rachel is doing." It was hard and exhausting, living like Rachel might die any day. We can only live that way for so long. I did put Ethan in playschool and even though I don't know how it will work, I am very glad I did. Please continue to pray for us as we learn to navigate this new 'normal'. There are times when I feel like everything is possible and God is in control and then other times when it feels like the complete opposite is true. I usually feel the latter in the middle of the night when I am feeling desperate for sleeep...so I know I can't put too much weight on these feelings. But in a way, it does feel like life as we knew it before is 'ruined'.
I was thinking this afternoon of a Isaiah 43:19. Just previously in that chapter, God talks of how He saved the Israelites by opening this path through the sea and drowing the Egyptians who were pursuing them - no small feat. And then He says, "But forget all that - it is nothing compared to what I am going to do. He says, " For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland."
I love that picture. I love knowing that God is actively, right now, doing a new thing in the wildernesses and wastelands of our lives. I often don't feel that way when I am in the middle of the wasteland - at times it is hard to see that God is doing anything at all. I feel lost - and the road we are on, endless. But when I look back at previous times when life as I knew it was "ruined", I can see how God did something new and good. And how it looked like nothing I had seen before. How I was never the same again..and I wouldn't want to be.
I am not saying that I think the new thing God is doing, is fixing Rachel's heart. He might be. But that wasn't what I meant. As far as we know, Rachel's heart situation is unchanged. And there is no surgery to fix the problems she has right now. But I do believe that God is at work, in unseen ways, right now....He is using this 'wilderness' to shape us into the people He wants us to be. I think that when we look back at this time, no matter what the outcome, that we will see how He was at work. My Grandma Plett had a favorite song. The words were "My Lord knows the way through the wilderness. All I have to do is follow." It expresses a trust that I want to have too. We may feel lost, ruined. But God is in the business of bringing Good from what seems like a tragedy, in the lives of those who trust Him. That's just Who He is.
Dave's parents just texted. They will be arriving in Calgary at two this morning! They will be staying at our house while we are at the Hospice. It will be great to see them and share Rachel (and her smiles) with them.
And her oxygen levels have stayed high! You may remember that her levels hovered around the 50-60 mark for most of the last 3 months and then suddenly shot up to 70. It is still in the low 70's. Our cardiologist said it might have something to do with other arteries going into the lungs - they may have expanded a bit to allow more flow. (not only are her pulmonary arteries abnormal but all the arteries going into her lungs and this kind of contracting or expanding is typical of this type of artery) She wasn't surprised by it but she said that perhaps we will have Rachel with us much longer than we first thought. This possibility used to scare us - we knew that the longer we had her, the harder the grief would be. Yet this time was different. Dave and I both were surprised at how GLAD we were to hear this. We feel like cheering this little girl on...This little girl who is so bravely living her life. (in Dave's mom's words) And we felt so happy about having her with us longer! This was really the first time this produced this kind of response in us and it took us a bit by surprise.
Our Cardiologist is planning to ask one of her colleagues in Toronto to look at the echocardiogram for us. It sounds like these echos can be pretty tricky to read, especially when the arteries/veins, heart structure etc..are as complicated as Rachel's. I appreciate our Doctor and her interest in finding out all she can about what is going on inside her heart. We are so glad both for her expertise and her caring manner. This applies to Rachel's whole support team. They seem so eager to figure out ways to help her.
So much has changed since those early days after Rachel was born. We used to think she would be gone or start deteriorating anytime and that thought affected every thought of the future, every plan. For example, I even wondered if I should put Ethan into playschool because our lives seems so topsy-turvy. We have lived away from home almost as much as we have been at home this summer. When others wanted to make plans a week or month down the road, we used to say "well, we will see how Rachel is doing." It was hard and exhausting, living like Rachel might die any day. We can only live that way for so long. I did put Ethan in playschool and even though I don't know how it will work, I am very glad I did. Please continue to pray for us as we learn to navigate this new 'normal'. There are times when I feel like everything is possible and God is in control and then other times when it feels like the complete opposite is true. I usually feel the latter in the middle of the night when I am feeling desperate for sleeep...so I know I can't put too much weight on these feelings. But in a way, it does feel like life as we knew it before is 'ruined'.
I was thinking this afternoon of a Isaiah 43:19. Just previously in that chapter, God talks of how He saved the Israelites by opening this path through the sea and drowing the Egyptians who were pursuing them - no small feat. And then He says, "But forget all that - it is nothing compared to what I am going to do. He says, " For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland."
I love that picture. I love knowing that God is actively, right now, doing a new thing in the wildernesses and wastelands of our lives. I often don't feel that way when I am in the middle of the wasteland - at times it is hard to see that God is doing anything at all. I feel lost - and the road we are on, endless. But when I look back at previous times when life as I knew it was "ruined", I can see how God did something new and good. And how it looked like nothing I had seen before. How I was never the same again..and I wouldn't want to be.
I am not saying that I think the new thing God is doing, is fixing Rachel's heart. He might be. But that wasn't what I meant. As far as we know, Rachel's heart situation is unchanged. And there is no surgery to fix the problems she has right now. But I do believe that God is at work, in unseen ways, right now....He is using this 'wilderness' to shape us into the people He wants us to be. I think that when we look back at this time, no matter what the outcome, that we will see how He was at work. My Grandma Plett had a favorite song. The words were "My Lord knows the way through the wilderness. All I have to do is follow." It expresses a trust that I want to have too. We may feel lost, ruined. But God is in the business of bringing Good from what seems like a tragedy, in the lives of those who trust Him. That's just Who He is.
Dave's parents just texted. They will be arriving in Calgary at two this morning! They will be staying at our house while we are at the Hospice. It will be great to see them and share Rachel (and her smiles) with them.
Monday, September 6, 2010
A Sudden Growth Spurt
On Thursday my parents decided spur of the moment to jump in the car and drive to Calgary! The fields were much too wet to do anything and they didn't know when their next opportunity would be to see us. It was so good to have them. I was still sick. My voice started coming back yesterday and I wanted to talk! But it was so wonderful to have them here. They stayed two full days. Mom took Rachel one whole night for us so we could rest. Rest being the key word because I coughed pretty much all night. You are right Roselle....there should be a law against moms of young kids getting sick! Thank-you everyone for your notes and well wishes and prayers!! We also had some special visitors from Manitoba drop in on Sunday night.
Mom and I also went shopping for Rachel because she has had a little growth spurt!! She is now wearing one month sleepers from Sears. (7 lbs) They look pretty baggy on her but when she stretches out her legs, they almost reach the ends. We also graduated her to Newborn diapers tonight! (The preemies still fit better but she was wetting them through.) This is great because it is a bit hard to find preemie diapers. We think she may have gained a bit of weight - and we will know very soon because...we are going back to the Flames House tomorrow!!
We are falling more and more in love with our little girl. There are so many thoughts, so many things I want to write about here - tough questions and conversations I am chewing over. But not the time to do it. If you see me, feel free to ask me about it though! I'd love to share with you in person what is on my heart - what we are wrestling with these days in relation to Rachel and what God has been teaching me. I want to hear your heart too! Thanks again for being our friends in this journey. Good-night!
ps - one more thing: Does anyone know where to find doll socks?? the NB socks are waaaaay too big.
Mom and I also went shopping for Rachel because she has had a little growth spurt!! She is now wearing one month sleepers from Sears. (7 lbs) They look pretty baggy on her but when she stretches out her legs, they almost reach the ends. We also graduated her to Newborn diapers tonight! (The preemies still fit better but she was wetting them through.) This is great because it is a bit hard to find preemie diapers. We think she may have gained a bit of weight - and we will know very soon because...we are going back to the Flames House tomorrow!!
We are falling more and more in love with our little girl. There are so many thoughts, so many things I want to write about here - tough questions and conversations I am chewing over. But not the time to do it. If you see me, feel free to ask me about it though! I'd love to share with you in person what is on my heart - what we are wrestling with these days in relation to Rachel and what God has been teaching me. I want to hear your heart too! Thanks again for being our friends in this journey. Good-night!
ps - one more thing: Does anyone know where to find doll socks?? the NB socks are waaaaay too big.
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| Listening to Rachel's heart on May 22 - picture by NILMDTS |
Thursday, September 2, 2010
A Tough Week (3 1/2 months old)
The last week has been pretty tough. We are just trying to stay afloat so I haven't written anything for awhile. I came down with a really bad throat infection just before Dave went back to work. It was also just after I finally made it to my second gym class in a year. O well - I tell myself there will be time later to focus on losing weight. It's hard these days to be kind to myself in that area. The most frustrating thing now about being sick is not being able to talk, make the phone calls I need to make (or think I have to make) and direct my kids during the day. No one else is sick here yet. Hopefully that doesn't change.
But people have been asking about Rachel so I'll give a brief update. I keep hearing that people are checking this blog every day! Wow. (I like to bug Dave about how many 'followers' Rachel has gained in her short life compared to his blog followers...he he) Rachel sure is loved by many. Thank-you for being so interested in our journey. She's still doing the same as far as we can see. She does seem to be eating better these days. (still every 2 hours or so though). She seems fairly happy too. She is very responsive to us and it seems like she is trying to talk.
Dave's brother Tim came to visit us for a few days! This was his first time to meet Rachel and we were really glad to have him here. Dave and Tim took the two older kids to Heart Creek Trail for most of a day. I got some rest at home with Rachel.
We are expecting to see both our parents in the next while too! Next Tuesday we are back at the Hospice (maybe for a week) and we are really looking forward to getting some sleep again. Please pray for David as he has returned to work. We believe that God is sustaining us. This time of sickness and exhaustion too shall pass.
But people have been asking about Rachel so I'll give a brief update. I keep hearing that people are checking this blog every day! Wow. (I like to bug Dave about how many 'followers' Rachel has gained in her short life compared to his blog followers...he he) Rachel sure is loved by many. Thank-you for being so interested in our journey. She's still doing the same as far as we can see. She does seem to be eating better these days. (still every 2 hours or so though). She seems fairly happy too. She is very responsive to us and it seems like she is trying to talk.
Dave's brother Tim came to visit us for a few days! This was his first time to meet Rachel and we were really glad to have him here. Dave and Tim took the two older kids to Heart Creek Trail for most of a day. I got some rest at home with Rachel.
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| Sleeping with her sheep (Abigail gave it to her to help her sleep) |
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