Beautiful gift

Sadly, we missed church today.  Graham has a cold so he tried to get some extra rest throughout the day.  We're praying that he recuperates quickly and the rest of us stay healthy.  He kept his distance from Josiah today.  

I didn't think I was allowed to heplock Josiah's PICC line but the visiting nurse said that I could.  The theory is easy but the challenge for me is just dealing with air bubbles while pulling two different liquids into the one syringe (heparin and saline).  Today's nurse did one syringe and I did the other (Josiah has two lumens on his PICC line and they each need to be heplocked daily.)  This week I'll try to do one of the lumens each day with the visiting nurse and then I'm hopeful that I'll be able to do it on Christmas so that a nurse doesn't have to come and see us.  We've already said that we won't need the shift nurse on Christmas in the hope that he'll be able to be with his family.

My brother came over today so Isaac and Josiah had some quality uncle time and Graham and I had some rest in addition to quality brother time.  Other friends from church came over and blessed us this evening.  It's always nice when others are able to hold Josiah.  He's definitely a chunk.  We're rethinking the amount of his feeds.  At the hospital we had reduced his feeds to 75 mL every three hours but then when the dietitian here said he'd lost weight we decided to increase the amount of his feed if he tolerated it.  He certainly tolerated it in that he hasn't had reflux with his feeds; however, it's difficult to say if it's made him fussier.  We shouldn't have been surprised that he had lost weight and we originally reduced the amount so that he would be more comfortable.  On the other hand, some of his fussy times seem to be about a half hour before his feed, possibly indicating that he is hungry.  If only he could tell me clearly what he's feeling!  We pray for wisdom and believe God gives it.     

"Children are a gift from the LORD; they are a reward from him." (Psalm 127:3)  Josiah is a beautiful gift and we thank God for him.

Thanks for your prayers and support!

Blessings,

Elizabeth

A fussy boy

We gave Josiah morphine five times today, starting at 1:00 AM.  He went to sleep fussy last night and woke up the same way.  I was in Isaac's room this morning when I heard Josiah crying loudly with Graham.  I put Isaac's light on and gave him his children's Bible and another book and then Graham and I worked on calming Josiah down with morphine and blow by oxygen.  Around half an hour later, Isaac called for me.  I went in and said that Daddy and Mommy were helping Josiah.  He said, "Help too." and climbed out of bed.  I said he needed to go to the potty and then I said he could help by praying so he put his hands together and prayed after me for Josiah while sitting on the potty.  Graham told me that later in the morning Isaac noticed a cut on Graham's hands so he said, "Dear God, Daddy better.  Amen."

We miss our nurse on Saturdays but Graham's parents blessed us tremendously with their love and help today.

Between crying spells, Josiah enjoyed some time on his mat and in his swing and in the stroller.  At one point he particularly enjoyed me kissing his tummy.  We're thankful for the great moments.

Thank you for your prayers and support!

Blessings,

Elizabeth

Another outing

Isaac and I ventured over to Grandma and Grandpa's house today for a visit.  A couple of minutes after I left, a friend showed up at our home whom I haven't seen for months.  I look forward to seeing her soon.  While Isaac napped I went to the mall to return a couple of items I bought yesterday.  I had bought a zippered fleece for Josiah but once home I realized that it would be too warm for him (he gets sweaty and clammy very easily) and the hood would get in the way while he was sleeping.  I went through Isaac's old clothes yesterday and realized that Josiah can easily wear button up shirts and thin zippered tops.  Since coming home he's only been in buttoned sleepers as we can put them on and not affect the oxygen tubing and we can easily access his tummy to check pops and his foot for the sat probe at night.  It will be nice to get him out of the sleepers for a change.

It's good to get out of the house but as I drove with Isaac I thought that there should be two children in the car with me.  

I've been trying to get Josiah on his mat between 7:00 and 8:00 in the morning before the nurse arrives.  He's usually awake then and in a relatively good mood.  This tires him out so then he sleeps for a while after that.  He has good mornings but he's often irritable in the afternoon.  We gave him his 6:00 morphine an hour earlier but we probably should have given it to him earlier in the afternoon.  He's been irritable this evening and hard to settle.  We gave him some benadryl but we may need to give him more morphine.  Graham is in with him now while I type this so I'll say goodnight.

Thank you for all your support and your continued prayers.  We appreciate your perseverance in praying for us.      

Blessings,

Elizabeth

Eight months old

For some reason it seems harder to listen to Josiah cry.   I don't want him to be sad or uncomfortable or in pain. 

I drove today for the first time since July.  I did a little Christmas shopping at the mall.  I couldn't resist the Elmo underwear for Isaac.  He's not ready for them yet but he may be soon and a little extra motivation won't hurt.

A staff member from the Hospice of Waterloo Region came to our home today.  We will get paired with a volunteer who will come to our home once a week, starting in January.  Visits are usually between one and four hours.  We think we'll have the volunteer play with Isaac.  We may also have their social worker come and speak with us to give us tips about how to speak with Isaac about all that's going on.  Isaac likes to pat Josiah like he sees me doing to soothe him.  He also likes to pass him toys.  Isaac watched us give Josiah a bath in our baby bathtub yesterday (typically we've just been giving him sponge baths to keep his PICC line dry).  Graham was not surprised when Isaac asked to have his bath in the baby bathtub tonight.   

Isaac had a lot of fun on his "aunt date" today and was very happy to play with his cousins after they finished school.  He also had fun with his second cousin late this afternoon.

It's time to refill the bags with syringes and head to bed.  Thank you so much for your prayers and support.  It's hard to believe that Josiah turned eight months old today.

Blessings,

Elizabeth

Pewter and Poetry

I was thinking last night about how lovely it is to watch Josiah sleeping peacefully.  His sats are often high 70s or low 80s when he's asleep and he looks quite perfect apart from the NG tube and the nose prongs.  Josiah slept well last night.  He just woke up once when he needed his diaper changed, and then went back to sleep. 

Josiah had a good day today.  He tolerated exercise time and he was even on his tummy for quite a while.  He usually just cries when I put him on his tummy.  He also gave beautiful smiles to his grandparents before his lunch.

I've liked pewter since my kindergarten teacher gave me something made out of pewter.  I was in grade five at the time and I'm pretty sure it was a little bunny pin.  Graham and I honeymooned in Nova Scotia and part of our trip was in Mahone Bay where there is a pewter studio.  We order a pewter ornament every year and our children have their own ornament with their name, birth date and Bible verse.  Josiah's ornament arrived yesterday.  It's called "Cherish" and shows a mother holding a baby.  This year's annual ornament is a mother polar bear with her two cubs.  Graham bought me a pewter heart necklace on our honeymoon so I also have a necklace for each child.  Josiah's necklace arrived yesterday as well.  It's called "Heart Beat."  It has a little cut-out heart on the bottom and the rest is a hammered texture.  I chose it because of the heart and because it made me think of the poem below by John Donne.  I don't like violence and this poem has violent imagery but I like the poem and I feel like it goes along with this journey.  I do hope it doesn't offend anyone.

BATTER my heart, three person'd God; for, you
As yet but knocke, breathe, shine, and seeke to mend;
That I may rise, and stand, o'erthrow mee,'and bend
Your force, to breake, blowe, burn and make me new.
I, like an usurpt towne, to'another due,	5
Labour to'admit you, but Oh, to no end,
Reason your viceroy in mee, mee should defend,
But is captiv'd, and proves weake or untrue.
Yet dearely'I love you,'and would be loved faine,
But am betroth'd unto your enemie:	10
Divorce mee,'untie, or breake that knot againe;
Take mee to you, imprison mee, for I
Except you'enthrall mee, never shall be free,
Nor ever chast, except you ravish mee.

It's sort of the poetic version of, "Please hit me over the head with a two-by-four Lord.  I need You to come and change me  - this will hurt.  I need You to capture my heart, mind, and soul because I can't do this on my own.  I need the freedom that only you can give by taking me to Yourself as Your own."

I don't want to think about where we'd be without family and friends (that includes our church of course).  We had three grandparents here over the course of the day helping out and the fourth grandparent was no doubt praying up a storm.  Once again we were blessed with delicious food today. 

I'm so thankful for our shift nursing and for our wonderful nurse who sings to Josiah and rocks him back and forth and tries to soothe him ... and I also fiercely wish that I didn't need a nurse to look after my son.

Thank you for your love, prayers, and support.  God's provisions are abundant.

Blessings,

Elizabeth

Birthday Boy

The birthday boy relaxing with his pet giraffe

Isaac is now officially two years old as today is his real birthday.  He clearly wanted to start his birthday early as he awoke before 5:00 but he eventually went back to sleep.  He opened our gifts today and had the end of the birthday cake.  Actually, we were trying to get him to eat more vegetables at dinner.  We said, "What do big boys eat?"  and right away he responded, "Cake."

Josiah had a better night last night.  We give him lasix at midnight so he usually needs his wet diaper changed at some point in the night.  This morning we had an uneventful trip to the hospital.  Josiah reacted reasonably well to the shots and the nurse thought his PICC line site looked fine.  The doctor wondered if we should consider removing it due to the risks of infection but we've decided to keep it for now as there are other risks involved with removing it as well as the benefit of having access for a morphine pump, if the need arose.  We're praying it doesn't get infected.  

Heading into the cold with Grandma and Grandpa

We gave Josiah more morphine and blow by oxygen today.  We may start giving him three regular doses of morphine in addition to whenever he needs it (we are currently giving two regular doses).  He was making a moaning sound today.

Graham and I were both able to have naps to catch up on lost sleep while Isaac visited his grandparents at their home.  He really is an amazing boy and just goes with the flow of what's happening. 

It's time for sleep.  Thanks so much for your prayers and support.

Blessings,

Elizabeth

PICC line to be assessed

We are heading to Grand River Hospital early tomorrow morning as Josiah is getting a vaccine and his paediatrician will also assess his PICC line.  It's been weeping the last few days so the nurse asked us to see the doctor.  We're praying that it will be okay as we really do not want to lose this line for various reasons, not the least of which is the fact that the end of the line is in the middle of a large clot.

Josiah was up a lot last night.  I gave him morphine at 3:30 AM.  It seems like he might be confusing day and night.  He was irritable and uncomfortable today.

I'm going to try to go to bed now so that I can attempt to keep my sanity.  Thank you so much for your prayers and support.

Blessings,

Elizabeth