This needs to be short so that I can head to bed to get some sleep before the late night feed and meds. Today was similar to yesterday. Isaac went to church with his grandparents but unfortunately we didn't get there. We gave Josiah morphine with all his daytime feeds. We are usually able to stop the morphine at 6:00 PM as he's been sleeping well at night thankfully, so that's the plan again. Josiah was in the stroller a lot today. We had some cuddles though they are not quite as you might imagine. He tends to want to arch his head back and he's not a fan of Mommy sitting down. We had some visitors this evening and a delicious dinner.
Graham heads back to work in the morning. Please pray that this next transition goes well for all of us. We appreciate your love, support, and prayers. Good night!
Blessings,
Elizabeth
Sunday, 6 January 2013
Fresh tears
I cry tonight for the boy I don't know. For the eight month old who smiles and giggles and coos and chatters and flies forwards and backwards on his mama's legs. For the boy who happily nurses to sleep and loves to eat his food in his chair at the table. For the boy who loves to be with his older brother who makes him laugh. This boy breathes easily and deeply and has rosy skin.
I wouldn't trade Josiah for the world. He is a beautiful gift from God. I wish I had more happy memories. The lovely palliative care doctor asked us to tell him about Josiah. Did he have a favourite toy? What was his personality? What are our memories from before we went to the hospital? A lot of that time was challenging too.
Though he looked perfect, he had so much wrong with his heart at birth. What a gift to be able to take him home a week after birth. Amazingly, the doctors expect him to die of something he didn't have at birth - pulmonary vein stenosis. A small percentage of babies who have their TAPVD fixed then acquire pulmonary vein stenosis which is what happened to Josiah.
We were watching a DVD tonight in which someone died. That's what set this off. I can't imagine the moment when breathing stops. What on earth would I do next, except to pray and cry and thank God for His mercies - for they are new every morning. I will need them again and again. I can't imagine not being able to hold him in my arms. My sweet Josiah with the beautiful smiles - Mommy will always love you.
I wouldn't trade Josiah for the world. He is a beautiful gift from God. I wish I had more happy memories. The lovely palliative care doctor asked us to tell him about Josiah. Did he have a favourite toy? What was his personality? What are our memories from before we went to the hospital? A lot of that time was challenging too.
Though he looked perfect, he had so much wrong with his heart at birth. What a gift to be able to take him home a week after birth. Amazingly, the doctors expect him to die of something he didn't have at birth - pulmonary vein stenosis. A small percentage of babies who have their TAPVD fixed then acquire pulmonary vein stenosis which is what happened to Josiah.
We were watching a DVD tonight in which someone died. That's what set this off. I can't imagine the moment when breathing stops. What on earth would I do next, except to pray and cry and thank God for His mercies - for they are new every morning. I will need them again and again. I can't imagine not being able to hold him in my arms. My sweet Josiah with the beautiful smiles - Mommy will always love you.
Saturday, 5 January 2013
Short Report
There's not much to report today. I did have some cuddles with Josiah so that was special. We gave him morphine with his feeds. He enjoyed the taste of prunes at 6:00 PM and we changed his tapes and nasal prongs tonight. Isaac coloured a picture of a plane for Josiah which is now taped to the crib. Isaac likes to pat Josiah like he sees me doing when I'm trying to calm him.
It's time to put the Christmas tree away and have a good night's sleep. Isaac slept until 6:00 AM this morning so that was a blessing!
Thank you for your prayers and support!
Blessings,
Elizabeth
It's time to put the Christmas tree away and have a good night's sleep. Isaac slept until 6:00 AM this morning so that was a blessing!
Thank you for your prayers and support!
Blessings,
Elizabeth
Friday, 4 January 2013
One year later
Yeay - Isaac's back! We've had fun being with Isaac today. He's such a joy.
It was a year ago today, on the first Friday in January, that Graham and I travelled to Toronto for my first echocardiogram at SickKids Hospital. During the appointment we met with a cardiologist who outlined Josiah's prognosis and our options. They confirmed everything we had heard at McMaster Children's Hospital the week before. From the hospital we travelled to Stouffville to talk and cry with our friends before returning home.
We didn't know all that was coming but we knew it would be challenging and we knew we wouldn't walk alone as God, our family, and friends would be with us and Josiah. We also didn't know about all the wonderful people we would meet along the way, including hospital staff, nurses, doctors, surgeons, patients' families, Ronald McDonald House staff and families, and new friends in Toronto. A lot happens during a year. We thank God for the gift of Josiah, we thank Him for all His amazing provisions, and we thank Him for the love, joy, and peace that is ours through Christ Jesus.
Graham and I had a real date today! Graham's parents brought Isaac home and then stayed to help the rest of the day. Right before we thought Isaac was going to have a nap, I went to get blood work done while Graham picked up some medical supplies. Then we went out for lunch! I think this is the first time we have both left the house at the same time without Josiah. It was nice to be together - we tried to stay awake to chat. Graham goes back to work on Monday so life is about to change again.
We enjoyed a delicious supper together tonight before Graham's parents headed back home. Isaac particularly enjoyed his spinach.
The physiotherapist came today and worked briefly with Josiah. Josiah did not have a great day. The nurse practitioner wasn't able to come today but she'll come next week.
Thanks for all of your love, support, and prayers.
Blessings,
Elizabeth
It was a year ago today, on the first Friday in January, that Graham and I travelled to Toronto for my first echocardiogram at SickKids Hospital. During the appointment we met with a cardiologist who outlined Josiah's prognosis and our options. They confirmed everything we had heard at McMaster Children's Hospital the week before. From the hospital we travelled to Stouffville to talk and cry with our friends before returning home.
We didn't know all that was coming but we knew it would be challenging and we knew we wouldn't walk alone as God, our family, and friends would be with us and Josiah. We also didn't know about all the wonderful people we would meet along the way, including hospital staff, nurses, doctors, surgeons, patients' families, Ronald McDonald House staff and families, and new friends in Toronto. A lot happens during a year. We thank God for the gift of Josiah, we thank Him for all His amazing provisions, and we thank Him for the love, joy, and peace that is ours through Christ Jesus.
Graham and I had a real date today! Graham's parents brought Isaac home and then stayed to help the rest of the day. Right before we thought Isaac was going to have a nap, I went to get blood work done while Graham picked up some medical supplies. Then we went out for lunch! I think this is the first time we have both left the house at the same time without Josiah. It was nice to be together - we tried to stay awake to chat. Graham goes back to work on Monday so life is about to change again.
We enjoyed a delicious supper together tonight before Graham's parents headed back home. Isaac particularly enjoyed his spinach.
The physiotherapist came today and worked briefly with Josiah. Josiah did not have a great day. The nurse practitioner wasn't able to come today but she'll come next week.
Thanks for all of your love, support, and prayers.
Blessings,
Elizabeth
Thursday, 3 January 2013
Isaac's back tomorrow
Josiah fell asleep around 11:30 PM last night and then was only up around 1:30 AM for a diaper change. He again slept until 8:00 AM, right through his 6:00 AM feed. I'm always a little nervous when I give him his meds when he is sleeping as at least one of them is very cold which bothers him when he is awake. Thankfully tonight we were able to get him to sleep around 7:45 PM, though he has been fragile.
He moaned and cried a lot today. Even stroller rides didn't seem enjoyable to him today. He did enjoy some nice cuddles with his uncle though. I'm wondering if part of the reason he was happier yesterday was due to our morphine schedule from the previous few days. Perhaps we should have kept giving him lots of morphine yesterday. It's hard to want to give him morphine when he's calm and happy. The nurse practitioner will be back tomorrow so we'll ask for her advice.
My cold is mainly in my chest now. I'm refraining from cuddling Josiah. We look forward to showering Isaac with hugs and kisses when he returns with Grandma and Grandpa Faulkner tomorrow. We've missed him. Each time we call him on FaceTime he's full of energy and stories to tell.
We enjoyed a delicious tamale pie tonight for dinner.
I've been trying to sort through a bin of paperwork that we brought back from SickKids. I'm imagining a paperless society with documents that file themselves. There were photos in the bin of Josiah from before his stay at SickKids. He seemed so normal then even though his anatomy has always been problematic. Every so often I'll look at him now and imagine his face without the nose prongs and NG tube. He did go a couple of days without needing any oxygen in the hospital.
We've signed up Isaac for a weekly program at the library so it will be fun to go to that with him starting next week. Our nursing shifts will start a half hour earlier at 7:30 AM so that Graham has time to get ready for work. For January at least Graham will drive to work instead of taking the bus as it will save time.
Goodnight and thank you for holding us up in your prayers.
Blessings,
Elizabeth
He moaned and cried a lot today. Even stroller rides didn't seem enjoyable to him today. He did enjoy some nice cuddles with his uncle though. I'm wondering if part of the reason he was happier yesterday was due to our morphine schedule from the previous few days. Perhaps we should have kept giving him lots of morphine yesterday. It's hard to want to give him morphine when he's calm and happy. The nurse practitioner will be back tomorrow so we'll ask for her advice.
My cold is mainly in my chest now. I'm refraining from cuddling Josiah. We look forward to showering Isaac with hugs and kisses when he returns with Grandma and Grandpa Faulkner tomorrow. We've missed him. Each time we call him on FaceTime he's full of energy and stories to tell.
We enjoyed a delicious tamale pie tonight for dinner.
I've been trying to sort through a bin of paperwork that we brought back from SickKids. I'm imagining a paperless society with documents that file themselves. There were photos in the bin of Josiah from before his stay at SickKids. He seemed so normal then even though his anatomy has always been problematic. Every so often I'll look at him now and imagine his face without the nose prongs and NG tube. He did go a couple of days without needing any oxygen in the hospital.
We've signed up Isaac for a weekly program at the library so it will be fun to go to that with him starting next week. Our nursing shifts will start a half hour earlier at 7:30 AM so that Graham has time to get ready for work. For January at least Graham will drive to work instead of taking the bus as it will save time.
Goodnight and thank you for holding us up in your prayers.
Blessings,
Elizabeth
Wednesday, 2 January 2013
Smiles
Someone out there must have prayed for smiles because we received quite a few of them today from Josiah! It was a good day. Josiah only had morphine at 6:00 AM and 6:00 PM. Thankfully, he's also had BMs two days in a row. He is more fussy this evening but we're going to see if Tylenol and Benadryl will help. Gone are the days it seems when Josiah went to sleep right after his enox shot at 7:00. It's nearing 10:00 PM and Graham is pushing him in the stroller. Actually, we just discovered that he really likes the puppy that sings and dances to "It Makes Me Want to Shout." He stared at it when it sang and as soon as it stopped he made a huge pout on his face and started to cry. He immediately stopped when the puppy started singing again. I guess that gives us another trick up our sleeves.
He woke up around 1:30 AM last night but he fell asleep after I changed his diaper and then he slept until I knocked over the oxygen tank around 8:00 AM (it makes quite a loud noise). He slept right through his 6:00 AM meds and feed.
Graham and I were planning to get a little more sleep this morning but then someone knocked on the door and there was the dietitian whom I had forgotten was coming. I checked the calendar and realized that the social worker from Hospice was coming at 10:00 so we each washed and dressed instead.
Josiah lost a little weight. This didn't surprise me given that we decreased his feeds. As he is dehydrated we thought we'd increase his feeds again. We expect he'll tolerate it.
The social worker from Hospice was very helpful. Our main questions were about Isaac and how to talk to him about what's going on. We appreciated all that she had to say. One very good point was not to just say to Isaac that Josiah is sick but to use the actual name of the disease (pulmonary vein stenosis, for example). This is important as Mommy and Daddy also get sick but it's not the same thing.
The doctor said my lungs sounded clear at my appointment today so I should be at the tail end of this cold. We'll see how the night goes and then decide in the morning if Isaac will return tomorrow or the next day.
We enjoyed some delicious homemade turkey soup for dinner. Hopefully we'll be able to get to bed soon. If we can't get Josiah to sleep in the evenings it's going to be very difficult for Graham and I to get enough sleep when Graham returns to work so please pray about this.
Thank you for your prayers and support!
Blessings,
Elizabeth
He woke up around 1:30 AM last night but he fell asleep after I changed his diaper and then he slept until I knocked over the oxygen tank around 8:00 AM (it makes quite a loud noise). He slept right through his 6:00 AM meds and feed.
Graham and I were planning to get a little more sleep this morning but then someone knocked on the door and there was the dietitian whom I had forgotten was coming. I checked the calendar and realized that the social worker from Hospice was coming at 10:00 so we each washed and dressed instead.
Josiah lost a little weight. This didn't surprise me given that we decreased his feeds. As he is dehydrated we thought we'd increase his feeds again. We expect he'll tolerate it.
The social worker from Hospice was very helpful. Our main questions were about Isaac and how to talk to him about what's going on. We appreciated all that she had to say. One very good point was not to just say to Isaac that Josiah is sick but to use the actual name of the disease (pulmonary vein stenosis, for example). This is important as Mommy and Daddy also get sick but it's not the same thing.
The doctor said my lungs sounded clear at my appointment today so I should be at the tail end of this cold. We'll see how the night goes and then decide in the morning if Isaac will return tomorrow or the next day.
We enjoyed some delicious homemade turkey soup for dinner. Hopefully we'll be able to get to bed soon. If we can't get Josiah to sleep in the evenings it's going to be very difficult for Graham and I to get enough sleep when Graham returns to work so please pray about this.
Thank you for your prayers and support!
Blessings,
Elizabeth
Tuesday, 1 January 2013
Happy 2013!
Happy New Year!
It's hard to believe it's 2013.
Our nurse informed me today that the Chinese remedy I took last night (water boiled with ginger and brown sugar) unfortunately only helps at the onset of a cold. They have other herbs that they use for my stage of a cold but he and his wife didn't think it would be wise for me to try the remedy in case it doesn't have the same effect on me as I am not Chinese. Too bad. It's sweet of them to be so caring. I do think/hope I'm on the upward swing of this cold. I happen to have a physical scheduled for tomorrow so I'll be able to get the doctor to listen to my lungs just in case.
Last night Josiah started crying on and off around 3:00 AM. I changed his diaper but that didn't help for long. We gave him morphine around 3:45 and then Graham put him in the stroller where he eventually had a long sleep. He was in the stroller a lot today and even had many of his feeds there. He seems to be most comfortable when he's upright and moving.
His life right now mainly consists of sleeping, stroller rides, some times of moaning, and some cuddles. We especially appreciate any time when he is alert and happy as these times are rare. He is definitely moaning less, for which we are very thankful. He does like his muslin receiving blankets and often likes to sleep with the blanket touching his face. This is a photo of Graham holding Josiah's feed over the stroller.
We were able to get more rest today. Thank you for all your support, prayers, and encouraging words.
Blessings,
Elizabeth and Graham
It's hard to believe it's 2013.
Last night Josiah started crying on and off around 3:00 AM. I changed his diaper but that didn't help for long. We gave him morphine around 3:45 and then Graham put him in the stroller where he eventually had a long sleep. He was in the stroller a lot today and even had many of his feeds there. He seems to be most comfortable when he's upright and moving.
His life right now mainly consists of sleeping, stroller rides, some times of moaning, and some cuddles. We especially appreciate any time when he is alert and happy as these times are rare. He is definitely moaning less, for which we are very thankful. He does like his muslin receiving blankets and often likes to sleep with the blanket touching his face. This is a photo of Graham holding Josiah's feed over the stroller.
We were able to get more rest today. Thank you for all your support, prayers, and encouraging words.
Blessings,
Elizabeth and Graham
Subscribe to:
Posts (Atom)