Happy Valentine's Day!

The dietitian was here this morning.  She weighs and measures Josiah.  He has lost a little weight since she was here a couple of weeks ago.  It didn't dawn on me at the time but I later remembered that we  didn't feed him solids for a week when he was sick so I suspect that's part of the reason he lost a little weight.

I asked her about giving Josiah milk every three and a half hours and she is fine with us trying that.  We'll start this Saturday.  This will allow me to start his last feed at 11:30 PM instead of 12:00 AM so I'll get to bed a little earlier. 

Josiah had an alright day.  He enjoys eating his solid food in the kitchen.  He seems to be arching back his neck and head more which is often something babies do when they need more oxygen.  His sleeping sats are lower as well.  Oh how I would love to give his body more oxygen.  I remember looking at him when he was on ECMO at the hospital the night before his last surgery.  His lips were red because all of his blood was being oxygenated and pumped through his body.  I had never seen him with red lips before.  I just looked back at the photos and found one with the monitor showing his oxygen sats at 99%.   

I didn't mention yesterday that we had a few hours of nursing last evening, hence we were able to get Starbucks and spend an hour on the couch.  The show we were watching had someone die.  They talked about the funeral home workers taking the body.  How does a mother say, "You can take away his body now"?  

I had some quality hide and seek time with Isaac.  He told me where to hide three times in a row, which coincidentally was the same place that he hid.  I usually look for him and say out loud things like, "Where is Isaac?  He's not in the kitchen."  Isaac mimicked me and narrated as he looked for me in different places until he came to where he knew I was hiding.  What a joy!

My mom made a delicious dessert to share with us today, complete with chocolate hearts from Laura Secord.  Isaac was thrilled.  

I danced with my Valentine's today.  Here's the song.  I suggest you dance with your Valentine.

Thanks for all your prayers and support!

Blessings,

Elizabeth

Psalm 16:8,11
I know the Lord is always with me.  I will not be shaken, for he is right beside me. ... You will show me the way of life, granting me the joy of your presence and the pleasures of living with you forever.

10 Months Old!

Josiah is 10 months old today!  We praise God for our ten months with him.  He celebrated with creamed corn for lunch and a delightful mixture of green beans and peaches for dinner.  Graham and I celebrated with Starbucks and a date on the couch watching a movie.  

We both noticed that Josiah's face seems puffier today.  If something is becoming blocked in Josiah, fluids could back up and cause his face to become puffy.  Please pray about this.

The lovely wound care specialist came today and suggested some new taping possibilities and gave me some skin cream to try on Josiah's cheeks.  I showed her a blog that my aunt told me about and she ordered a sample of one of the tapes for me that was recommended.  It may also be that Josiah's skin will be sensitive to any tape.  His poor cheeks get so red as you can see from the photo.   (Please note that the tapes in the top photo look horrible but I didn't want to change them until the nurse saw what was happening.)

Josiah certainly put on a show for the nurse; he was going at his tapes with all his might.  Even with thick socks on his hands, I'm sure his tube would have come out if I hadn't been there to stop him.  We changed his tapes this afternoon and tried Duoderm with Tegaderm over top and sealed the edges with a Cavilon wipe.  I haven't tried that last step before so I'm hoping it works.  It worked well when she tried it on my arm.

I was talking to Isaac about Jesus yesterday (while he was being disciplined).  He said that Jesus is in heaven and I was starting to explain how Jesus is also in Mommy and Daddy.  He laughed and pulled on my shirt saying, "Jesus is in Mommy's tummy?"  I'm so thankful Jesus walks with us through this journey.

I'm going to say goodnight.  We thank you so much for your love and prayers.   

Blessings,

Elizabeth

Galatians 2:20
I have been crucified with Christ and I no longer live, but Christ lives in me.  The life I now live in the body, I live by faith in the son of God, who loved me and gave himself for me.

Sweet sleep

Praise God from whom all blessings flow ... we slept last night!  Isaac slept until just before 6:00 AM and Josiah awoke as I was giving him his 6:00 AM meds.  It was a lovely surprise to be in my own bed when the alarm went off this morning.

We went to the local hospital this morning for Josiah's monthly RSV injection.  Two nurses each gave him an injection in his thighs at the same time.  Josiah did fairly well.  Unfortunately, due to Josiah being on an anti-coagulant, we needed to put firm pressure on the injection sites for five minutes and then I needed to give him his enoxaparin shot and hold that site down for another five minutes.  Josiah is not a fan of this process.  She was born in Romania so she was quite surprised to see a map of Romania hanging on the wall in Josiah's room.  Graham was in Romania several times before we were married.  I'm afraid we haven't redecorated since the room was an office.  It wasn't Josiah's room until we came home as he spent his early months in our bedroom. 

Isaac had a better day today so I'm hoping this is a short cold.  He doesn't like not being able to go in the "baby's room."

The physiotherapist was here today.  She was very pleased that his lungs sounded so clear.  I was with Isaac while she worked with Josiah but she told me that Josiah stayed on his tummy longer and held his head higher and turned it from side to side more.  I asked her about next steps.  She said that babies usually roll from their tummies to their backs but to do that they need to be able to push up with their arms.  Josiah can't do that yet. 

I did a big grocery shop yesterday and made a meal tonight.  It felt great to peel and cut up vegetables and make dinner with a recipe.  It's also nice that Isaac ate his whole bowl and asked for more.  (Obviously broccoli was not a key ingredient in this meal!)  It feels good to do some normal things. 

A friend of mine told me that she heard her almost two-year old over the monitor when he woke up.  He was praying for Josiah, asking God to help.  Wow!  My dad told me a quotation by Oswald Chambers: "The meaning of prayer is that we get hold of God, not of the answer."  So many people have been praying for us for so long.  I hope you are coming closer to God.   

The wound care nurse is coming tomorrow afternoon.   
 
Josiah was quite tired today.  I saw his paediatrician briefly at the hospital this morning.  The nurse practitioner had contacted him with her thoughts about his swollen face.  He told me that it could be a sign that the pulmonary veins were becoming more obstructed.  I thought there would be congestion in his lungs when that happened but he told me that congestion would eventually happen but not necessarily right away.  Neither Graham or I noticed more swelling but perhaps it's because we see him every day. 

The paediatrician also thought that it would be fine to move to giving Josiah his milk every four hours after I told him I would speak with the dietitian regarding the schedule, later this week.  The question will be whether or not he can tolerate larger feeds.  The primary reason would be to enable us to get a little more sleep by going to bed earlier.

Thank you very much for your prayers! 

Blessings,

Elizabeth

Matthew 11:28-30
Then Jesus said, "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest.  Take my yoke upon you.  Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light." 

Two cheeky (and lovely) boys

I wrote last night that one of our boys needed to sleep so that Graham could sleep.  After writing that, I realized that it wasn't true.  Graham could also sleep if only one boy needed me at a time.  It was actually quite amusing how perfectly the boys took over from each other.  A few times I finished with one of them and went to the door and then heard the other one.  It's nice to see that they are already cooperating and working together.  I slept in three beds last night - well, two beds and a comfortable chair.  God knows exactly what we can handle. 

Actually, Josiah had a much better night last night.  He didn't wake up until just after 3:30 AM and that was because he knocked his nasal prongs out of his nose.  I'm going to ask our visiting nurse if she knows where we can get some No No's to put on Josiah's arms at night so that he can't reach his face.  The socks keep him from scratching his face but he can still rub against the tape and the nasal prongs and he showed me how in the middle of the night how he can bite the sock and pull it off.  He knows how to impress his mommy. 

The nurse practitioner was here today.  She listened to Josiah's lungs and said they sounded clear.  We praise God for clear lungs.  If we all had the same cold, Josiah was the least affected.  We are praying that Josiah does not catch Isaac's cold.  I think it would also be a miracle if I don't catch it.  I told someone that I missed the memo on how not to catch a cold from your two-year old.  If you have this memo, please send it to me.

Our nurse practitioner has referred us to a wound care specialist due to Josiah's reaction to his face tapes.  This was great news.  She should have different tapes and techniques to try.

Josiah had extra morphine today and was hard to settle at times but he also had wonderful smiles twice.  I thank God for those beautiful smiles.  The nurse practitioner thought Josiah's face looked extra puffy and wondered if that was a sign of the disease progressing. 

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

Blessings,

Elizabeth

1 Corinthians 13:12
Now we see things imperfectly as in a cloudy mirror, but then we will see everything with perfect clarity.  All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely. 

Hoping for sleep

After another night with very little sleep, Graham and I decided to stay at home this morning and take shifts sleeping while the other looked after Josiah.  Isaac went to church with his grandparents.  We are now wondering if Isaac is getting sick as he has been coughing a little in his bed tonight and he keeps waking up crying. 

It was great to see Graham's parents this afternoon.  They brought a yummy meal and had fun with the boys.  Josiah joined us at the dinner table to try beans for the first time.  I wouldn't say they are his favourite. 

Josiah was up last night but he was generally happy.  I think perhaps if I have the energy I should just try to play with him if he's up and happy tonight in order to tire him out.  His mood was up and down today.  We need one of the boys to sleep so that Graham can get some sleep.  Speaking of sleep, I'd better head to bed. 

Thanks so much for keeping us in your prayers! 

Blessings,

Elizabeth

Isaiah 41:13
For I hold you by your right hand - I, the Lord your God.  And I say to you, "Don't be afraid.  I am here to help you."

Breakfast date

As Isaac was enjoying time with his cousins this morning, Graham and I were able to leave the house for a few hours together while the nurse was here watching Josiah.  We had a nice breakfast and then went to a couple of stores.  It was definitely a treat!

We picked up a digital alarm clock for Isaac's room.  We're hoping to teach him to go back to sleep if the first number is not a 6 or a 7.  We are ever hopeful.

Josiah had a better day today.  He did gag a little one time which was a little disconcerting.  He also had some great smiles.  At one time when he was crying today, Isaac came in and tried to console Josiah, mimicking what I said and did. 

Our biggest needs in regards to Josiah are his nights and his face tapes.  The last several nights have not been good.  He has woken up often and either been irritable or wide awake.  At times he'll fall back to sleep easily, only to wake up a few minutes later.  We need to find tapes that don't bother Josiah's skin.  His cheeks are very red.  It also needs to be a tape that Josiah cannot remove easily as he is quite skilled in that area.  We've had some new suggestions so we are hoping something works. 

Josiah often appears to be scratching his face.  We are unsure if this is due to his morphine or just due to the irritation of the nose prongs and the tapes on his face.  The socks we put on his hands help but even with his socks on he would have pulled out his NG tube today had I not been there to grab him.  His perseverance is impressive! 

We are without our sat monitor tonight as all of our infant sensors no longer work.  We'll order more on Monday.  Perhaps this will result in all of us having more sleep. 

Thank you so much for all of your prayers and support and kind words.  We appreciate you so much!

Blessings,

Elizabeth

Psalm 3:3
But you, O Lord, are a shield around me; you are my glory, the one who holds my head high.

Snow Day

It's been quite the snow day today.  The university was closed today so Graham was home from work.  It was a treat to have him here.  Our nurse made it to our house but her car did get stuck in the snow on the way to our home and a police officer helped her and her husband get back on the road. 

Graham spent a lot of his time shovelling our driveway repeatedly today.  He also had fun with Isaac while I napped this afternoon (I didn't get much sleep last night) and then he drove Isaac to his cousins' home where he is spending the night.

Josiah hasn't had a great day.  He managed to pull out his NG tube about four inches while he was getting his feed but I was able to push it back in without any problems.  There is a much greater risk of aspiration if the tube comes out when he is getting milk.  Thankfully our nurse has quick hands. 

We're not sure why Josiah is crying more these days.  Some of it may be due to teething but I don't think that's all of it.  He's also up a lot at night.  The fact that I don't feel completely exhausted is definitely the grace of God.  I am thankful.

I received an email from the mother of one of Josiah's roommates when he was in the transition room at SickKids.  Her little girl had a heart transplant a few weeks ago and she's doing great.  May God bless her abundantly and draw near to those who made the decision to donate.

We had a nice visit with our pastor and his wife tonight.  They prayed for Josiah before they left.

It's nice to be in a warm home as the wind howls outside.  If we were born in most of countries of the world we couldn't possibly have this life.  Josiah wouldn't be here.  We are thankful.

Thank you for your prayers!    

Blessings,

Elizabeth

Psalm 42:8
But each day the Lord pours his unfailing love upon me, and through each night I sing his songs, praying to God who gives me life.