Sweet comfort

Today we took our baby home

He likes it here.

kb & db

Family

We are extremely thankful for our family. From Drew's Grandparents to his aunts, uncles, cousins, great aunts and uncles, great cousins (or second cousins, third cousins and whatever else one calls them) and especially great grandma. Not to mention our non-related family members...

This video is a small representation of our gratefulness for our family. Drew loves his Canucks mobile from his cousin Gavin (and Daijah, Charlize, Aunty Debbie and Uncle Curtis). He spends lots of time grinning from ear to ear while enthusiastically batting away at the bears. Go Canucks! He also loves his "Leafs Suck" t-shirt from Uncle Chris. Karla loves fruit, as evidenced by her joy in eating some carefully peeled oranges from Aunty Liza. And to all the rest of our family: Thank you for being so great!

Some words

If a picture is worth a thousand words than how much is a video? Regardless, Drew has something to say to you all.

Love

60

...days that is.

Yesterday was Drew's two month birthday. Today he is sixty days old, which means day sixty in the NICU. So much has happened since day one but I am loathe to attempt a summary because the thought seems exhausting. The light at the end of the tunnel that is our discharge date is in sight (I think). Maybe next week? Don't hold me to it but please pray for the possibility.

We've gone from this:

Day 1

To this:

2 Months (somewhat blurry because he loves to squirm)

Drew is growing and improving by the day. Yesterday I performed my first trach tube change. It went smooth-as-butter and now I'm officially qualified to do all of Drew's trach care. Karla is the one we call Dr. (just a Ph.d so that doesn't really count right?) but now you can call me nurse. Actually, most of the nurses in the NICU have never performed a trach tube change so maybe you should call me an RT (respiratory therapist). Maybe I'll just stick to Daddy.

Karla is breastfeeding Drew which is awesome. This has resulted in a stream of onlookers as no one has seen a ventilated baby breastfeed before. I think Drew is smart like his Mommy. With the two of them working together who knows what other amazing feats we'll see. He still needs his official feeding study to make sure he isn't aspirating any of his milk but we're confident that he'll pass the test.

Drew is also very social and loves to interact. He fixates on faces. You get the impression that he is processing a very thorough opinion when he is looking at you. I think the jury is still out on Daddy. Grandma and Grandpa V. visited over the weekend which was a big thrill for Drew. The more cuddles he gets the better.

This week is another busy one. Karla will do a trach change, Drew gets his vaccinations, we'll get him a rigged-out stroller and he'll have a feeding study. Hopefully we'll get to do our care-by-parent weekend at the end of the week (a dress rehearsal for going home done in a deep dark corner of the hospital). It also appears that Drew is going through a growth spurt because he can't get enough of the good stuff. When we do occasionally feed him with a bottle, giving him what would be a calculated suitable amount (things are closely measured in the NICU), he finishes in minutes and looks for more. They don't have flow meters for breasts but I think he is getting substantially more than the calculated amount.

Thanks for praying for us. While things are mostly great this is still very hard. Drew still has "unusual" breath holding spells although we are able to manage them (we think...so far so good). The uncertainty of the cause of Drew's breathing difficulty coupled with the uncertainty of his future prognosis is always on our minds. For the most part it doesn't affect our daily functioning as we trust in God's provision to see us through this, but it is still present. Pray that we don't worry in the uncertainty.

Two month family portrait

Happy breathing!

db

Stroller

It's time to shop for a stroller. I remember thinking about this back in the heady, innocent days of pregnancy. Looking for strollers reminds me of shopping for a car; down to the not-too-pushy but strangely friendly sales-people. Who knew that strollers had so many features that I didn't know I even needed? Now if I could only find one with a remote control... Which takes me to what we do need. A stroller that can equip the added weight of a ventilator, suction machine, emergency supplies and yes, even a baby and maybe some diapers too. Despite all of that I am actually excited for this. Getting a stroller means we're going to put Drew in it, which means we're one step closer to going home.

Getting a stroller also makes me feel somewhat normal. This is the kind of thing that Dad's are supposed to do. I say this with a measure of sarcasm as doing normal dad things at normal baby places is a relative thing. Facing this "outside of the expected normal experience" of having a sick baby has forced me to view the "expected normal experience" from the outside. There is a certain point when our expectations mold our actions. I can all to easily fall into the trap of my wanted expectations leading my actions rather than my calling (calling opens a whole new can of worms but please read calling as my life as a follower of Jesus Christ - everything). Am I proceeding in hope or am I walking with a sense of entitlement? (For a perspective on entitlement read the book of Romans in the New Testament) And what are my wanted expectations and are they valid?

As we endeavor to pray in all things with thanksgiving I pray that we are able to respond appropriately to whatever is thrown our way. I pray that our expectations are defined and lead by our calling. I pray that any sense of entitlement we have doesn't cause us to become bitter when things happen outside our expectations. We also don't give up hope of a healing miracle for Drew.


Time to get a stroller.

db

Deep thoughts

Blue Juice

So far so good with Drew's feeding studies. Blue seems to be our theme colour. Blue milk is ok, blue clothes are nice, blue hospital gowns are expected, blue baby isn't so Smurfy.

Hope and such

Karla mentioned in a recent post that a genetic test which we expected to confirm Drew's diagnosis was, in fact, negative. That news came as a surprise to us and Drew's medical team although it hasn't changed his treatment. I was hoping for confirmation mostly to give us something to hang our hats on, but also because of the possibility of finally getting a diagnosis for myself. For those of you who don't know me, I've been sick since my teenage years and I have never received a specific diagnosis for what I have. As a father you like to see yourself in your children but this is a bit much.

The Bible is full of promises; comforting, inspiring, beautiful but also sobering, humbling and frightening. In fact, the latter make the former that much greater. We've received some great messages this past week reminding us of many of God's promises. One of the themes throughout the Bible is the promise that God provides in our times of need. His mercies are new each day, He is our strength in times of weakness, He provides that which we are lacking. Part of why I was so disappointed with Drew's negative genetic test was because I placed a measure of hope in its outcome. I would know why he has breathing problems and would probably have more certainty for the future. If my hope rests on anything other than God I will eventually be disappointed.

This has me thinking about situations. It is easy, at least for me, to become a situational relativist. I compare my situation(s) with others to measure the relative niceness or difficulty of my situation. Sure my baby is sick but he isn't as bad as some of the other babies in the hospital. Or, this sure sucks. Why can't I have a normal healthy child like those other new parents going home after delivering? That is beside the point. We have been given this situation(s) and God will provide for our every need. And I don't say this as a matter of if. God has provided our every need and He will see us through this and anything else that comes our way.

So if we put our hope in anything but God, or we are controlled by our situation(s) and their relation to other peoples situations, we will be left hopeless. We shouldn't ignore them or brush them off as easy when they're hard. We can be comforted by and seek strength from God because He promises it. Easier said than done. I pray that we don't try harder but that we react in faith. And that we remember and are thankful.

Please don't mourn us. Drew is happy and healthy (for the most part). Our days are filled with laughs and I poke fun at Karla just as much as I always have. Don't try to imagine what we are going through. Pray for us and be thankful with us. Place your hope in God and embrace your situations while being aware of others situations. And if you're going to have a beer make sure it's craft beer. Seriously.

db

Mobile watching

Yup, it's true what Mommy said. I had a tough week last week. But it wasn't all bad and I'm feeling better. I even got to cuddle with Uncle Giddy last night! Life is good.

Here I am watching my mobile. I love watching the animals float above me, but mostly I stay interested to oblige Mommy and Daddy. They are kinda weird, those two. As long as my soother is close by I stay happy. Do you like my fancy belt? It keeps my ventilator tubes nicely stable. Sometimes I grab them just to make sure they're firmly attached. You can also see that I'm hyper-extended to keep pressure off my chin and neck. It's supposed to be uncomfortable but I don't mind. I'm quite tough by baby standards, at least that's what everyone tells me.

Anyway, thanks for praying for me. And thanks for praying for my Mommy and Daddy. And thanks for the great crib toys Renna. I know you're bigger than me but I'm growing really fast so you better watch out (by the way I think you're really cute).

Here's a video of me watching my mobile. Notice how I can stay focused on one animal all the way around. It's a new trick I learned and I'm kinda proud of it. And I'm not that stinky, Mommy is just sensitive. Daddy thinks I smell fine and cheers me on every time I make a stink. Daddy sure is cool.

drew

bonus snacks

Until Drew passes the first of his feeding studies tomorrow he is only allowed to have "a few drops" of milk in his mouth at a time. Lucky for Drew, Mommy's interpretation of "a few drops" is perhaps a little more generous than the nurses intended.

kb

The bad, the good, and the soother count

Happy Easter everyone!

This week has had a lot of ups and downs:

Drew has started to have severe breath holding spells when he is upset. He can hold his breath until he turns totally blue and passes out, causing the alarms to go off and the nurses to come running. No one seems to know why he is doing this or what can be done about it.

We also got results from the genetic test that we hoped would confirm Drew's suspected diagnosis. Surprisingly, the results were negative (apparently genetics doesn't have the answer for everything?) so now we don't know why he has this breathing problem. It's frustrating for us, but doesn't make much of a difference for Drew, since his symptoms need to be addressed regardless of the cause.

The great thing is that we have started to be able to do a lot of Drew's care ourselves. We do most of his trach care, with nurses watching in case of an emergency. We can now pick him up with just the two of us, instead of having to have a nurse put him in our arms. And yesterday we gave him his first real bath to wash off 6 weeks of accumulated stinkiness.

Drew is usually awake for most of the day, waking up around 8 or 9 am and going to sleep around 8 or 9 pm, with convenient naps around lunch and dinner (I'm not sure what kind of trouble he gets into at night). He loves reading books, watching his mobile, spitting his soother onto the floor (once they hit the floor the soothers get replaced; the soother count for this weekend? 5, so far) and spending hours contemplating his musical aquarium (aka. his "crib crack", another loaner from dear Renna).

Here is a video of him helping get ready for his bath by unhooking his ventilator.


kb