It was wonderful to be back at our church this morning. The nurse came to the house at 9:30 AM to hep lock Josiah's PICC line, so we were late arriving for the 10:00 AM service but we were still able to participate in the singing time. We sang the song, "Glory to God Forever". One part is "Take my life and let it be all for you and for your glory, take my life and let it be yours." I was standing rocking Josiah in my arms. I do want that to be true in my life (I have a long way to go) but I also sang the song replacing "my" with "his," referring to Josiah. As I stood singing, I thought that if I had to choose between a short life for Josiah that brought glory to God and a long life that did not bring him glory, I would choose the former. Of course, it's not a choice and I realize that Josiah can't choose to bring glory to God himself as a baby but I do believe that God can be glorified through Josiah's life even now and that's what we want.
Thankfully Josiah slept peacefully through church, aided by a little morphine. He was fussy this morning with laboured breathing and we couldn't calm him down so we gave him some morphine. It would have been nice to say hi to people at church but we had to leave early in order to be home to get his meds and milk ready for 12:00 PM. Actually, we left at the perfect time because when we pulled in the driveway, one of Graham's wonderful colleagues was at the door ready to bless us with various treats. It was lovely to see her.
Isaac is quite good at saying "Sorry" (pronounced Saw-ree), although he is also apt to repeat the behaviour of which he is guilty. Did I mention he was two? Today while sitting on the potty he starting hitting his knee with his new toy hammer. I said that I didn't want him to hit himself as he could hurt himself. He immediately stroked his knee and said, "Sorry knee." Earlier in the week, when his cardboard crocodile fell off the coffee table (his ark) onto the floor, he gently picked it up, cradling it in his arms and said, "Sorry."
We had another delicious dinner provided tonight thanks to yet another friend. We are blessed!
It's time to sign off. We'll be glad to see our shift nurse again tomorrow morning. Thank you for your prayers and support!
Blessings,
Elizabeth
Sunday, 9 December 2012
Saturday, 8 December 2012
Party day
Last night Graham and I debated whether or not to suction Josiah. He was awake around 4:00 AM and his breathing sounded very congested. We prepared everything we needed but his breathing improved after a number of sneezes and coughs. Thankfully his lungs sounded completely clear when the nurse listened to them today. (Even though we don't have a shift nurse on the weekends, a nurse still comes by to heplock Josiah's PICC line.)
Josiah had quite a good day today. We gave him a bath this morning and that tuckered him out so he had a sleep. We asked the nurse to help us with changing Josiah's face tapes. It's not the nicest process for Josiah but we tried to be as gentle as possible. For some reason the tapes didn't do their job well today as we needed to remove and add more tape a few times. Thankfully we have a product that makes the tapes peel off without hurting Josiah. Tonight Graham heard the faint sound of the sat monitor alarm going off. When he looked in the crib he found Josiah happily playing with the nasal prongs in his hands (out of his nose) and the sat monitor wasn't reading correctly as the probe had fallen off his big toe. We added more tape.
We had a fun day. Before his nap, Isaac helped to decorate his birthday cake with smarties. It looked great though he was a little disappointed to have to wait to eat his cake. After he woke up he had a great time watching Grandpa F. blow up balloons and let some go. He enjoyed being with his cousins, aunts and uncles, and grandparents. One of my wonderful sister-in-laws made a delicious dinner for everyone while I had a nap. Thank you!
We brought Josiah out to the living room and he was blessed to have many cuddles and I was blessed to watch him being content in his family's arms. He breathed clearly today and didn't cough much. The nurse told us that it's possible that his larger feeds could cause some extra nasal congestion or he could have a cold. We're praying for clear nasal passages. We don't want to have to suction him. I believe it's very scary for him.
We were very blessed with a visit from members of our church family tonight. The love and support that we have received from our church family has been incredible.
I'm currently listening to a sermon podcast about the suffering of children. Perhaps I'll comment on it another day. It's time to head to bed. Good night. If you are reading this, I hope you know the love, joy, and peace of Jesus.
Blessings,
Elizabeth
P.S. What peace it is to know that we are always in God's hands. Here is "Your Hands" by J.J. Heller:
Josiah had quite a good day today. We gave him a bath this morning and that tuckered him out so he had a sleep. We asked the nurse to help us with changing Josiah's face tapes. It's not the nicest process for Josiah but we tried to be as gentle as possible. For some reason the tapes didn't do their job well today as we needed to remove and add more tape a few times. Thankfully we have a product that makes the tapes peel off without hurting Josiah. Tonight Graham heard the faint sound of the sat monitor alarm going off. When he looked in the crib he found Josiah happily playing with the nasal prongs in his hands (out of his nose) and the sat monitor wasn't reading correctly as the probe had fallen off his big toe. We added more tape.
We had a fun day. Before his nap, Isaac helped to decorate his birthday cake with smarties. It looked great though he was a little disappointed to have to wait to eat his cake. After he woke up he had a great time watching Grandpa F. blow up balloons and let some go. He enjoyed being with his cousins, aunts and uncles, and grandparents. One of my wonderful sister-in-laws made a delicious dinner for everyone while I had a nap. Thank you!
We brought Josiah out to the living room and he was blessed to have many cuddles and I was blessed to watch him being content in his family's arms. He breathed clearly today and didn't cough much. The nurse told us that it's possible that his larger feeds could cause some extra nasal congestion or he could have a cold. We're praying for clear nasal passages. We don't want to have to suction him. I believe it's very scary for him.
We were very blessed with a visit from members of our church family tonight. The love and support that we have received from our church family has been incredible.
I'm currently listening to a sermon podcast about the suffering of children. Perhaps I'll comment on it another day. It's time to head to bed. Good night. If you are reading this, I hope you know the love, joy, and peace of Jesus.
Blessings,
Elizabeth
P.S. What peace it is to know that we are always in God's hands. Here is "Your Hands" by J.J. Heller:
Friday, 7 December 2012
Christmas decorating
Tonight will be a late night but the Christmas tree is up, we've had our eggnog, and Amy Grant is singing "Emmanuel, God with us." I'm so thankful that He is. There is light in this darkness and His name is Jesus, the light of the world (John 8:12).
Last night we had another couch date as we watched the following 12 minute video of John Piper reading his poem, The Innkeeper. It was a good reminder for me after writing yesterday's blog post of the suffering and pain throughout history and all over the world ... and of God's amazing redemptive plan which came through the suffering and death of Jesus.
Josiah was quite irritable today. He has been coughing more and had some nasal congestion but both the nurse and physiotherapist said his lungs sound good and clear. We looked at the suction machine tonight to make sure it's set up in case we need it.
The physiotherapist was pleased with his work today. It's her first real assessment of him and she'll be back in two weeks so we need to keep up with the exercises. He's tolerated his increased feeds today.
We're celebrating Isaac's second birthday tomorrow with family so I'd better get some sleep!
Thanks so much for your prayers.
Blessings,
Elizabeth
Last night we had another couch date as we watched the following 12 minute video of John Piper reading his poem, The Innkeeper. It was a good reminder for me after writing yesterday's blog post of the suffering and pain throughout history and all over the world ... and of God's amazing redemptive plan which came through the suffering and death of Jesus.
Josiah was quite irritable today. He has been coughing more and had some nasal congestion but both the nurse and physiotherapist said his lungs sound good and clear. We looked at the suction machine tonight to make sure it's set up in case we need it.
The physiotherapist was pleased with his work today. It's her first real assessment of him and she'll be back in two weeks so we need to keep up with the exercises. He's tolerated his increased feeds today.
We're celebrating Isaac's second birthday tomorrow with family so I'd better get some sleep!
Thanks so much for your prayers.
Blessings,
Elizabeth
Thursday, 6 December 2012
Thinking
I went to bed early last night. I put the light off, closed my eyes, ... and started to think. Sleep comes quickly at 12:45 AM but at 9:15 PM the thoughts come - the thoughts that are either deep inside or just below the surface - the ones I keep at bay with Isaac, dishes, meds, visitors, music, anything but cleaning. It's probably good for me to try to process this reality we're living. After Graham came to bed and fell asleep I started looking at photos on the iPod. It's remarkably easy to go through the day and not think and not feel pain. God, what are you going to ask of us? This isn't supposed to make sense. It can't make sense. I can't make the logic argument for a suffering baby bringing glory to God. However, I do know that God brings good out of bad, that God is good, He's in control, He loves us, and I can trust Him. That's all I know and I can rest in that knowledge even in times of pain and loss. I'm speaking in faith to some extent as I haven't walked this particular journey before but God has never failed me.
Family and friends came by today. It's really nice to see people again. Graham had a meeting to attend tonight so it was great to have a friend over to keep me company and help with Isaac.
I realized today that Josiah's picc line was not heplocked yesterday due to some miscommunication. It's supposed to be done every twenty-four hours. Thankfully the line flushed well when the nurse came today. There was some bleeding at the site of the line so the nurse changed the dressing again.
The dietician came this morning. Josiah lost weight over the last week and a half so we're increasing his feeds and we'll see if he tolerates it both by not having reflux issues and not becoming puffy.
The last couple of mornings Josiah has woken up around 4:00 AM. Although it's a tad early, he smiles at me then and this morning he cooed and was clearly amused by the puppets on his DVD. It's the happiest I see him all day so I don't want to miss it. I would love to figure out how to help him be happier throughout the day.
We've noticed Josiah coughing a little last night and today. I forgot to ask the nurse to listen to his chest. The physiotherapist is coming tomorrow morning so I hope Josiah is in good form to work hard. I'd love to see some progression in his physical abilities.
It's time to lay my head on my pillow. Thank you for your prayers and support!
Blessings,
Elizabeth
Family and friends came by today. It's really nice to see people again. Graham had a meeting to attend tonight so it was great to have a friend over to keep me company and help with Isaac.
I realized today that Josiah's picc line was not heplocked yesterday due to some miscommunication. It's supposed to be done every twenty-four hours. Thankfully the line flushed well when the nurse came today. There was some bleeding at the site of the line so the nurse changed the dressing again.
The dietician came this morning. Josiah lost weight over the last week and a half so we're increasing his feeds and we'll see if he tolerates it both by not having reflux issues and not becoming puffy.
The last couple of mornings Josiah has woken up around 4:00 AM. Although it's a tad early, he smiles at me then and this morning he cooed and was clearly amused by the puppets on his DVD. It's the happiest I see him all day so I don't want to miss it. I would love to figure out how to help him be happier throughout the day.
We've noticed Josiah coughing a little last night and today. I forgot to ask the nurse to listen to his chest. The physiotherapist is coming tomorrow morning so I hope Josiah is in good form to work hard. I'd love to see some progression in his physical abilities.
It's time to lay my head on my pillow. Thank you for your prayers and support!
Blessings,
Elizabeth
Wednesday, 5 December 2012
Out of the house
Josiah made it out of the house today. He wasn't very excited to wear his winter jacket or sit in the car seat when the car wasn't moving but he did fairly well. We needed to go to the hospital to have his NG tube changed and to have an xray to confirm that it was in the right place in his stomach. Lack of extra hands on our expedition was not a problem. My dad drove us in his van and Graham, myself, and the nurse pushed the stroller and the oxygen tank and carried all our supplies. We left around 10:15 AM and made it back home at 12:00, just in time for Josiah's lunch and meds. I think he enjoyed being in the stroller again with something to look at other than our hallways.
We saw our paediatrician at the hospital. He very kindly gave us his pager number in case we ever needed to contact him quickly. It was nice to see some of the nurses we saw back in the spring when we had regular visits to Grand River Hospital.
We had family and friends over again today. Both Graham and I had a long nap which was much appreciated as we were both with our boys during the early morning hours. I may have already mentioned this but we feel very blessed that both our boys go to bed at 7:00 PM. We still have things to do for Josiah after that time but it feels like we get some down time. Of course, I'm on schedule to go to bed around 9:00 PM tonight. I'm a night owl and I can think of so many things I'd rather do than go to bed then but it will be good for all of us.
I heard Josiah getting very upset tonight. When I went into his room I realized that it was because his Baby Einstein DVD had ended and gone back to the main menu page. He was fine as soon as I started the DVD. He also often cries when the credits start rolling. At least he is communicating effectively.
Time to move along. We're thankful to God for another day.
Blessings,
Elizabeth
We saw our paediatrician at the hospital. He very kindly gave us his pager number in case we ever needed to contact him quickly. It was nice to see some of the nurses we saw back in the spring when we had regular visits to Grand River Hospital.
We had family and friends over again today. Both Graham and I had a long nap which was much appreciated as we were both with our boys during the early morning hours. I may have already mentioned this but we feel very blessed that both our boys go to bed at 7:00 PM. We still have things to do for Josiah after that time but it feels like we get some down time. Of course, I'm on schedule to go to bed around 9:00 PM tonight. I'm a night owl and I can think of so many things I'd rather do than go to bed then but it will be good for all of us.
I heard Josiah getting very upset tonight. When I went into his room I realized that it was because his Baby Einstein DVD had ended and gone back to the main menu page. He was fine as soon as I started the DVD. He also often cries when the credits start rolling. At least he is communicating effectively.
Time to move along. We're thankful to God for another day.
Blessings,
Elizabeth
Tuesday, 4 December 2012
NG tube troubles
We need to get a little more sleep. We're going to try staggering when we go to bed. One of us will go to bed early while the other one does the 9:00 PM feed. Then the first person will get up around 11:40 PM to prepare for the midnight feed and be able to go back to bed around 12:40 AM. We'll try this tomorrow night.
This morning a few family members dropped by for a visit, including a second cousin to play with Isaac. We had two friends visit later in the day.
I was thinking earlier this week that I wasn't able to fulfill a tradition this year. Each year a friend and I go to a pottery show and I buy a mug. This would have been the fourth year. I missed the Spring show as we had just arrived home with Josiah and I missed the fall show as we were at SickKids. Well, my friend showed up today with a mug that she had bought for me at the show. Wow! Another friend came by tonight and helped get me get out of the house for the first time since returning to Kitchener. I am blessed to have such wonderful and thoughtful friends.
Our shift nurse said that he held Josiah too much yesterday as his back was hurting him last night. Today we tried Josiah in our carrier and this worked well. Our nurse was happy to give his arms a break.
We received a call from one of our awesome nurse practitioners at SickKids. She was just checking in to find out how we were doing. It was nice to hear her voice.
We had been thinking that Josiah's NG tube was migrating a little but we discovered tonight that it has moved two inches out of his nose. We can still hear the pop a little (when we are preparing to give his meds) so we're praying that it doesn't move any more until we can go to our outpatient clinic at the local hospital tomorrow morning, preferably after his 9:00 AM feed. That way we'll have a two hour window before his next feed and medications are due. They will insert the tube and then give Josiah an x-ray to ensure that the tube is in the correct place.
Josiah enjoyed tasting sweet potato today. He was a beautiful mess. I'm not making the food like I did with Isaac and the jars only last three days so we'll have sweet potato for the next couple of days and then we'll move on to blueberries or squash. It's nice to see him take interest in food.
It's time to head to bed. Our wonderful God supplies all our needs. Thank you for blessing us by reading this blog and praying. He hears you.
Blessings,
Elizabeth
This morning a few family members dropped by for a visit, including a second cousin to play with Isaac. We had two friends visit later in the day.
I was thinking earlier this week that I wasn't able to fulfill a tradition this year. Each year a friend and I go to a pottery show and I buy a mug. This would have been the fourth year. I missed the Spring show as we had just arrived home with Josiah and I missed the fall show as we were at SickKids. Well, my friend showed up today with a mug that she had bought for me at the show. Wow! Another friend came by tonight and helped get me get out of the house for the first time since returning to Kitchener. I am blessed to have such wonderful and thoughtful friends.
Our shift nurse said that he held Josiah too much yesterday as his back was hurting him last night. Today we tried Josiah in our carrier and this worked well. Our nurse was happy to give his arms a break.
We received a call from one of our awesome nurse practitioners at SickKids. She was just checking in to find out how we were doing. It was nice to hear her voice.
We had been thinking that Josiah's NG tube was migrating a little but we discovered tonight that it has moved two inches out of his nose. We can still hear the pop a little (when we are preparing to give his meds) so we're praying that it doesn't move any more until we can go to our outpatient clinic at the local hospital tomorrow morning, preferably after his 9:00 AM feed. That way we'll have a two hour window before his next feed and medications are due. They will insert the tube and then give Josiah an x-ray to ensure that the tube is in the correct place.
Josiah enjoyed tasting sweet potato today. He was a beautiful mess. I'm not making the food like I did with Isaac and the jars only last three days so we'll have sweet potato for the next couple of days and then we'll move on to blueberries or squash. It's nice to see him take interest in food.
It's time to head to bed. Our wonderful God supplies all our needs. Thank you for blessing us by reading this blog and praying. He hears you.
Blessings,
Elizabeth
Monday, 3 December 2012
A fussy night and day
Josiah had a fussy night last night. Actually, Isaac woke up for some reason in the middle of the night (this is rare for him) so Graham tended to him and I stayed with Josiah. Isaac had a great day today but Josiah was hard to settle throughout the day, though he did give what appeared to be belly laughs shortly before he went to sleep tonight. Graham was blessed to be able to attend Sarah Tapley's life celebration today.
When Josiah is fussy and upset, his sats go down so we often give him blow by which means we hold an oxygen mask close to his face at a rate of six to eight litres of oxygen per minute. We've been doing this more often so we ordered more tanks this morning. We didn't hear the delivery person at the door but thankfully they left the tanks outside which we were alerted to when my parents arrived to take Isaac to the library. Isaac and Josiah are so blessed to have four incredible grandparents.
Isaac actually asked to go to the potty today and he knew how to perform when he got there. Of course he later peed in the bathtub but it looks like we might be getting somewhere.
We were blessed with visits from family and friends today. We're looking forward to having a good night's sleep and a great day tomorrow!
Blessings,
Elizabeth
When Josiah is fussy and upset, his sats go down so we often give him blow by which means we hold an oxygen mask close to his face at a rate of six to eight litres of oxygen per minute. We've been doing this more often so we ordered more tanks this morning. We didn't hear the delivery person at the door but thankfully they left the tanks outside which we were alerted to when my parents arrived to take Isaac to the library. Isaac and Josiah are so blessed to have four incredible grandparents.
Isaac actually asked to go to the potty today and he knew how to perform when he got there. Of course he later peed in the bathtub but it looks like we might be getting somewhere.
We were blessed with visits from family and friends today. We're looking forward to having a good night's sleep and a great day tomorrow!
Blessings,
Elizabeth
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