Home

We are home, and it feels strange.  I think it’s maybe like how a solder feels after being away on the battle-ground, and then finds himself home and the battle is over.   We are grieving the loss our sweet daughter and we miss her so much.  But on the other hand, there is so much relief that she is finally at peace and isn’t hurting anymore.   It’s grief mixed with relief.   And it all comes in waves.  One minute we are fine and dealing with practical issues, and then the next minute we are swamped with feelings of sadness.  I didn’t want to go to bed last night because I knew that once I actually stopped being busy I would probably just cry and cry.  And I did.    But knowing what she was going through in the last days of her life helps comfort me knowing that she is more alive in heaven right now then we are here down on earth.  She is free from her body of death and has gone into eternal light.

And I’m happy to report that the kids are doing good.  One of the doctor’s from the PACT team told us that children grieve in puddles and adults grieve in rivers.  And I liked that and it’s proving to be true.    The kids hop in and out of their sadness, sad one minute and happy the next, which really isn’t unlike Jason and I, I just think we feel it deeper.

But oh I miss my baby!  What I wouldn’t give to have her back wtih us!   But in my heart I know that she had to go.   The doctors and nurses were very honest with me which we appreciated so much, and I’m so glad we could let Ava go before her suffering got worse.

And we just wanted to thank everyone again for all the kindness showed to us.  For Jason’s parents who came down to see Ava before she died, for my parents who came and supported us and cared for our kids during her death.  For the nurses and doctors and staff from our ward 4D at Sick Kids who showed us so much kindness and compassion… they really do feel like my family now.  We want to thank our church family for praying and supporting us, for my friend’s who cleaned my house this week, for friends who brought food and flowers to welcome us home.   And for all you readers who have left us comments just letting us know that you are here for us.

Tomorrow I will give you some info about the funeral, but I have to go now because I am too tired to think.  But happy (mostly) to be at home, even if it’s without our Birdy.

,

When..

Just a quick post tonight… but I wanted to say that Ava had a pretty good day.   This morning when I got to the hospital Ava woke up and I took her off her CPAP and she was really cuddly, she nestled right in and I loved every minute of it.  But then it didn’t take long before she let me know she had enough and she wanted her CPAP back on again and then went back to sleep.  The second time she woke up was around noon – again she went off her CPAP and played with her toys and I took her for a quick walk around the unit.  And then she was tired again and the CPAP went back on, but she had a hard time settling down to sleeep, but thankfully was able calm down with some Advil and slept till about 4:00 pm.   She woke up quite happy and came off her CPAP again, and I gave her a bath and played with her and  then she was tired so I put her CPAP back on and she sat on my lap for a while and then she got  tired, we put her CPAP back on her and she went back to sleep!  This is story of Ava’s life right now.  She can be awake and off of her CPAP for about 45 minutes at a time, and then she spends the rest of the day sleeping.  But that’s OK.   We keep her comfortable and she is generally happy and I just pray she can stay stable until a heart comes in.

And now a little bit of news… tomorrow first thing Ava is getting her picc line rewired to a double lumen!    Which may not seem like anything big, but I’m excited by it. 🙂   Ava gets most of her meds by IV and sometimes they aren’t compatible, like the two she is getting right now.  Because right now her picc only has one line going into it, it means that everytime she gets her IV lasix, they have to stop her heart medication, flush the line, administer the lasix, flush the line and then start up her heart meds.  And now that she is on IV antibiotics, she needed to have a peripheral IV put in and that is just another poke.  So a picc line with two ports will it so much easier to get drugs into Ava, and Jason and I are really glad they are finally getting this done.

And on another note, our family is seperated again this week; the boys had day camp back at home and Sophia is back with my mom and Sarah is spending some quality time with Jason’s mom.   And so Sophia called me tonight from my parents house and in her sweet little 4 year old way asked me… “Mom, when are we going to be home forever with Ava?”  And it kinda broke my heart.   I wish I could give her answer as Jason and I want to know “when” too… but only God knows that.  So we keep on waiting!

Isaiah 30:18 (ESV)

18 Therefore the Lord waits to be gracious to you,
and therefore he exalts himself to show mercy to you.
For the Lord is a God of justice;
blessed are all those who wait for him.

Amen!

6 weeks of survival…

Ok – so we are 3 days into being home and I’m already exhausted…. oh dear.    And this is with Jason still home and my mom here and people bringing us dinners… scary huh?   It’s just that caring for Ava doesn’t leave a lot of room for sleep at night – I’m up for an hour at midnight,  feeding Ava, giving her meds and then pumping.   And then again at 3:00 am for at least a half hour feeding her again and then again for another hour around 6:00 am feeding her, giving her meds and pumping again.   Phew…

And with her ng tube,  feeding her is pretty slow, and it has to be slow or else she will throw everything up.   At the hospital they used an electric pump that just pushed her milk through her tube into her tummy over an hour.  But  since you can’t go home on a pump, we are using the gravity system instead which is a bottle that is attached to a tube with a drip chamber.  You hang the bottle upside down, adjust how fast it drips into the tube and let it go.  Except gravity is tricky because it can just stop when the pressure gets to high, or it can run through too quick,  and so it needs to be watched pretty close and because of that I’ve stopped using it at night.   I’ve tried, but night number two I woke up to realize that Ava’s entire feed hadn’t gone through at all, the milk was stone cold and she was starving.  I was so mad!    But another reason not to use it as night is just for safety,  if she somehow pulled her ng tube out, or if the milk started flowing too fast it could choke her.  So now at night I have to manually put the milk in a syringe and push it through the ng tube which I try to do over 40 minutes.  It’s nothing like feeding a normal healthy baby.  Nothing at all like getting up in the night and taking your sleepy hungry baby to bed with you and lying there nursing the baby  as you both fall contented back to sleep.   I wish.

And Ava still isn’t regularly breastfeeding…  which is a blog post in itself so I’ll chat about that later.

In good news, we spent yesterday afternoon at the hospital here in London so the cardiologist here could get a baseline on Ava.  She got a chest x-ray (poor little monkey) and an EKG, an echocardiogram and some blood-work.  A full work-over and thankfully everything looks great.   The nurse practitioner here in London was wonderful and I’m so glad that we live close to a good hospital.  We will be doing shared care, so next week we go back to Toronto and then back again in a few weeks to London.   We see each place once a month I think so every two weeks Ava will be seen by a cardiologist.  We will also be visiting Ava’s pediatrician here in London and we have a nurse that will come to our house once a week to check her out as well, so hopefully nothing falls through the cracks during this ‘interstage’ that Ava is in between her first two surgeries.   This isn’t a good time for single-ventricle baby’s as I think I mentioned before – they are very fragile with not much resistance so it will be nice to get through this time till her next surgery.

And that is where my six weeks of survival comes in.    Even though we are home, it doesn’t feel like home because I’m not picking back up my normal life… no baking, or shopping or cleaning or cooking, and it doesn’t feel that good.  But then after chatting with my wonderful caring and supportive husband tonight – who himself has had his hands full caring for the kids and trying to sort Sarah’s diabetes stuff out so she can go back to school – I realized that it’s kinda like taking your first baby home.  I always say that the first six weeks with a new baby is often just about survival, as you learn your new baby and get used to sleepless night… and that thought cheered me up because that’s kinda like life for us right now.   These first 6 weeks will likely be tough.  But as Jason says, she hopefully will get stronger every day and things will get easier and maybe even by the end of March we will be talking about her next surgery which would be awesome.

So it’s just about taking this day by day, sleeping when I can, not trying to do too much and just realizing once again that this is a moment in time.  God will get us through it.  It’s tough now, but I can hardly wait till we can look back in a few years and say, wow, remember when we first brought Ava home and how with the help of friends and family and by getting our strength from God, we got through.

And it is good to be home.   And I’d rather be here than at the hospital.   So I hope I’m not whining,  I just need to start this 6 week count-down and keep my eyes on the prize of getting her bigger and stronger.  So please bear with me, I hope I don’t get too grumpy and I’m sure eventually all will be OK.  🙂

We’re Home!!!

Wow, after 7 weeks of being away, we are finally home and it feels wonderful!!!!  We thought we would never get out of Toronto on time yesterday, because there were alot of lose ends to tidy up as Jason checked out of the Ronald MacDonald house and I tried to leave the hospital.     And even though Ava didn’t love the trip home – her first trip in a car seat – we still managed OK.  And I think Ava likes home.  I sure do… I can finally relax!    Well kinda, in between giving Ava meds 8 times a day and pumping and trying to nurse her and then tube feeding her 8 times a day,  we are a little bit busy over here.

But we were happy to see our wonderful neighbours actually missed us and we were welcomed home by this…

welcomehome

And there were balloons and streamers all over our fence outside and a gift inside and another poster…

poster

I will say it again, we have great neighbours.

And we also had to put up a sign on our doors asking for healthy visitors only please… which feels a bit snooty, but the fact is that Ava just can’t get sick – because if she does she will end up in the hospital.  Even tonight she was breathing a little bit too fast so I had to call the Dr on call at Sick Kids and thankfully she started breathing slower, but I have to keep an eye on her and he was talking about adjusting her medication, but even something as simple as that could land her back in the hospital which is something we wish to avoid for obvious reasons.

So we thank God for bringing us home and together again, and pray extra hard that God will keep Ava healthy until her next surgery.

I get to sleep in my own bed again tonight with my baby right there with me… hurrah!

4-Wheelers and a Baby

Doesn’t that just sound like it should go together, 4-wheelers and babies?  What a perfect combination.  But that is what this past Sunday was all about for us.   My middle brother John  and his wife had their second daughter and so we made the journey home to see them.

Here he is holding his baby daughter.  Isn’t she a sweetie?  Here’s one a little closer…

So now on my side of the family there are 13 grandchildren made up of  7 boys and 6 girls… almost even!

And because we were already in the area and because the kids were longing to go visit my youngest brother  Dan, we arranged to spend some time his family and his four wheelers.  And to be honest it isn’t their little cousins or my brother’s charm that’s the draw,  I’m pretty sure it’s the 4-wheelers.   And they are pretty lucky because they got all the time they wanted on them and more.

Here is Erik riding around the house…

And William’s turn seen here with my brother with his son on the big one.

And you may ask how I felt when my boys were riding… and to be honest I felt mostly fine.  You know, there is always that bit in you that wants to keep your kids wrapped up in downy blankets and kept somewhere safe, but I have that tiny bit of thrill seeker in me and I can’t not allow them to do these sort of things that I myself love to do.  But you can be guaranteed that my boys will approach a dirt-bike with my blessing….. oh no… if I have my way they will NEVER get near one of those death traps, NEVER.

And I’m so dad-gum mad I didn’t get a pic of my nephew riding his little 4-wheeler, oh-so-cute.   We tried Sarah on that one because it has a kill-switch on a remote just in case.  But in her case that kill-switch came into play too many times so we decided Sarah best to keep to this…

Slow and steady is the name of the game here.   Because it is a bit of a trick to learn how to adjust the speed, steer and LOOK where you are going.  I think she may have had trouble with the first two and never did catch on to the third part – which also happens to be the most important.

We had such a great day with family.   It almost makes us want to move back home and buy some land and get us some 4-wheeler’s of our own.  Almost.