Room with a view

aka the presidential suite

Unsettled

Drewby isn't feeling so hot right now. The most likely culprit is withdrawal from his post-operative sedatives. After a steady reduction of the lovely midazolam all last week his dosages have increased substantially for the last two days. Add to that a shot of morphine this morning. Ah, the counter intuitive nature of drug withdrawal treatment. He is also experiencing some impressive gas. Put these two annoyances together and you get one unhappy little Drew.

The poor guy isn't able to sleep for too long or too soundly with all this happening. He is jittery and agitated and plain grumpy. This has made for some late nights for me and long days for Karla as we are reluctant to leave his side right now. Again, another "usual" parenting experience with a NICU twist. Looking forward to no more twists!

Pray that Drew will feel better. For calmed nerves, no pain and reduced gas. Pray that Karla and I have patience and that we get enough rest. We're taking our home tracheostomy care training this week so the least amount of distractions the better.

Thanks for your prayers!

db

Withdrawal and Gas

It's a late night tonight. Drew had one of his grumpier days today. A combination of gas pains and withdrawal. One a very normal baby experience, the other somewhat more special...

Disclaimer: I take no responsibility for the cheesiness of this post. I blame fatherhood. The curse of the dad joke is now rearing it's ugly head with me. Who am I to fight it?

Drew told me he wanted to share some thoughts:

Today I'm feeling kinda grumpy.

So grumpy I don't even want my soother...

Okay, maybe I do want my soother. But I'm still a bit perturbed

This calls for some serious thinking. But what to think about?

I think I really love my Mommy. Yup I really do.

And she really loves me.

She's kind of goofy though...

I think Daddy is gonna be in big trouble...

Yup, he's gonna be in big trouble. But Mommy and I still love him...

drew/db

Packing on the pounds

Apparently lying around flat on your back for 10 days while your food gets delivered straight to your tummy is conducive to packing on the pounds. Our little Drew now weighs in at 8 lbs 7 oz, nearly 2 lbs above his birth weight (and still 1.5 lbs below his mommy's weight when she was born!)

Lying around flat on your back is also conducive to flattening the back of your head. Next week we start working on looking side to side to try and round it out again.

kb

Thank you Mrs. Hoving

Throughout this experience with Drew we have received countless encouraging messages from you. And we have experienced countless encouraging acts from you. Words and actions. We recognize these works as God blessing us through you.

Let me tell you about Mrs. Hoving (just a little bit or else I would never be able to finish). She was one of the first people that taught me about prayer. She also taught me about faith, and continues to do so. Mrs. Hoving has experienced many things in her life. Lots of it challenging. I would be hard-pressed to be able to find anyone else who has as much joy as her. I'm talking deep down, life affecting, life effecting true joy.

Please pray for and with her. For healing for Mr. Hoving and for continued strength and trust in Him. I also pray thanks that the Lord works through her; for the example she sets. When I was thinking about this last night the words to the song "It Is Well With My Soul" kept going through my head. Click on the title for a brief explanation about the song (you want to talk about perspective...).

It Is Well With My Soul

When peace like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well, with my soul.

Refrain:
It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.

Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.

My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!

For me, be it Christ, be it Christ hence to live:
If Jordan above me shall roll,
No pang shall be mine, for in death as in life,
Thou wilt whisper Thy peace to my soul.

But Lord, 'tis for Thee, for Thy coming we wait,
The sky, not the grave, is our goal;
Oh, trump of the angel! Oh, voice of the Lord!
Blessed hope, blessed rest of my soul.

And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.

Horatio Spafford


I'll leave you with a snippet from Mrs. Hoving's last email to us (I hope you don't mind Mrs. H):

"The bottom line is that we need to trust the loving -kindness and ultimate wisdom of our God and it is a life fight - not easy, but the answer. WE pray - our part and not demand -that is what is hard, but how much bigger is our God and His love was proven in Christ's outstretched arms."

db

Theme Song

If you listen closely you'll hear a song playing in the background. We like to encourage Drew to listen to the chorus.



db

Drew scores +++

I have to tell this story because it is just so stinkin' hilarious, I laugh out loud every time I think of it.

When we arrive at Drew's bedside one of the first things we do is take a look at the nurses notes to find out what he's been up to while we've been away (was he awake? upset? did he need any medications? ect).
The other night when we arrived Drew's nurse was on her break and on his chart it was noted that Drew recently received a "midazolam bolus" as he was "awake and agitated" with what we thought said "anus movement +++"
As we waited for his nurse to return, David and I puzzled over how one might observe anus movement, why one might wish to do so, and what kind of complex grading scale might be used to score such an observation.
His nurse found it highly entertaining when she returned and clarified for us that what she had in fact scribbled down was "arms movement +++"

kb

Getting it just right

It feels good to be wearing clothes again...but I'm missing something.

Hmmm.  I like my soother but that's not it. 

That's more like it.  

Goodnight!

drew

Cheap Sunglasses

Sappy Sapperson

That is what Karla now calls me. Not too sure when I became the sappy one of the family. I think I've cried more in these last 31 days then in the last 31 years...more than two or three times I reckon. And those who know Karla well know that she is funny, but this is getting to be too much. She figures that as long as I'm churning out the sappy stuff she'll keep giving the people what they want.

Drew is healing up nicely. His surgeon changed his trachea tube today and Drew handled it like a champ. He was awake the whole time but seemed to have other things on his mind because he didn't even bat an eye. He has some redness around the site but nothing too concerning. This means they'll start to wean him off the hard stuff and we'll get to hold him again. And hopefully we can give him a bath because he's starting to get smelly. I guess the new baby smell doesn't last forever.

We met our tracheostomy care instructor today and got our training schedule set. Things are moving along. If all goes to plan we'll hopefully be kicked out of the hospital in late April.

Here is a picture of our big highlight from last week. We got to hold an Olympic gold medal. I didn't intend to hold it like that. Honest.



db

IFYOU ARE HAVING TROUBLES...

Since when did normal become the new maximum?


In the pump room at the NICU this one cheeky little breast pump has the audacity to suggest that unless you are operating at maximum intensity you are not, in fact, "normal". I would find this distressing (what's an over-achiever left to do when the best you can accomplish is merely normal?) if it were not for this sticker:

which makes me smile every time I sit down. I imagine there has been many a NICU mom who looks at this and thinks "Oh, if you only knew the troubles I have..." This sticker makes me fondly think of our dear friend, Laura. As most who know her would agree, Laura is one nurse who may actually be able to assist with your "troubles".

kb

Faith

or more thoughts on perspective

14 What good is it, my brothers, if someone says he has faith but does not have works? Can that faith save him? 15 If a brother or sister is poorly clothed and lacking in daily food, 16 and one of you says to them, "Go in peace, be warmed and filled," without giving them the things needed for the body, what good is that? 17 So also faith by itself, if it does not have works, is dead.
James 2:14-17 (esv translation)

Karla and I have been receiving some very meaningful encouragements from some of you mentioning how our faith has been evident throughout this hard time. We appreciate those comments and given them, I thought it would be good to articulate, or at least try to explain, what this faith thing is. And trust me, we are far from having this figured out. Most days feel like we are just getting by. Our faith is anchored and we're tied to that anchor, but we are constantly been buffeted by the wind. I'm thankful that the rope is strong and that I didn't tie it.

To me, faith is active belief or, put another way, motivating belief. For us that motivating belief is in God. To put it further, it is a gift from God through Jesus Christ and the working power of the Holy Spirit. I will be the first to admit that apart from this we would not have the strength or hope to get through this trying time. This gift of faith gives us hope which is manifest in love. So when we say that we have faith in God, not only does it give us the strength and hope to go on, but even better, it defines and motivates how we go on.

I think that one of the points James is trying to make in the above passage is that faith is shown in actions that align with words. (There is more to the passage. You would do good to read the rest. Actions reveal ones heart; they are responsive.) You know the expression, "Talk is cheap." I don't think I would take it that far. Words are good and necessary, but if your words aren't matched by your actions your credibility will, and should be, called in to question. Jesus called this type, "White-washed tombs."(Matthew 23:27) Of course we aren't perfect. In our case we have many doubts, experience sadness and anger and fear and uncertainty...the list goes on. But we also have so many examples of God blessing and providing for us. Our faith is not blind!(Karla does sometimes call me blindly optimistic. I think that's just typical pessimist or cynicism speak, but that's another discussion...sort of) We have been continually blessed by all of you and have seen many answers to prayer during this time. Our hope is not pie-in-the-sky. I can't begin to express how much God gives us and how He equips us day to day to day.

So we pray that our response - words and actions - is full of thankfulness and praise to Him. We pray that no matter what, God is glorified through little Drew. And we pray that you are thankful with us as you continue to give us support.



db

Note: I wrote this post yesterday and hadn't published it yet because I didn't want to overwhelm the blog with posts. In the spirit of being transparent - My cheeks are stained with tears right now. We are emotionally and physically strained by this. As I talked about in an earlier email, this is a roller coaster ride. I'm not happy that my son is experiencing these challenges. Newborn babies should not have to suffer. But despite my feelings right now, what I wrote above still stands.

Dopey Drew

You didn't seem to mind the picture of Drew recovering from his surgery so here is a video from the same time. This was taken 3 days ago but is a fair representation of his current status. This is actually one of his more awake moments other than when he decides to test the limits of his nurses patience by attempting some squirms. That usually results in an extra shot of drugs. Almost like he knows....

My favourite part is when Karla finds out I'm filming. I'll probably have to watch my back now.



db

Patience

Remember the song about having patience? "Have patience, have patience, don't be in such a hurry. When you get inpatient, you always start to worry." Karla often sings this song to Drew when he is unsettled, usually when he's hungry. I now find myself hearing it in my head along with the line from the Tom Petty song, The Waiting, "The Waiting is the hardest part." This whole surgery on our baby thing has been tough. If the day of the surgery wasn't stressful enough, waiting as he heals has been hard. As previously mentioned, Drew isn't allowed to move too much (at all) which requires a constant dose of painkillers and sedatives. We want nothing more than for our son to be comfortable, but watching him receive these drugs is not fun. This isn't your usual baby tylenol or whiskey on the soother stuff.

Drew is healing nicely. His incision seems to be closing properly and the trachea tube is stable. His tube will be changed on Monday during which the channel (the hole in his neck) will be assessed after which he'll hopefully be weaned from his drugs. The next several weeks will include assessing Drew's ventilation needs, getting our care network and equipment organized and training on how to care for his needs. They don't teach tracheotomy and ventilator care at prenatal classes. A big gap, if you ask me.

As of now it looks like Drew will need 24 hour ventilator support. Pray that as he grows he will need less time on the ventilator. We are coming to grips with the major adjustment our life is facing. I wouldn't trade Drew for the world. He is awesome and the more I get to know him the more I love him (not sure how that works because I loved him more than imaginable from the first time I saw him).

After some indecision on the matter I have decided to include a picture of Drew as he is right now. My hope is that this helps guide you in praying for him.



Here's to looking forward to seeing our squirmy, kicking Drew again soon!

db

Awesome

(With the risk of over posting, we post again...)


This is a picture of tonight's supper, courtesy of Scott (Uncle Animal) and Cathy. It is an appropriate representation of the support we have been receiving. Unbelievably awesome! And every single other meal we have received has been top notch. From the lasagnas, soups, homemade bread, pasta, stew (mmmm Murphy meat), salads, desserts, freshly baked cookies, scones, muffins, loaf, scotch and on and on.

As Karla said, you guys really are +++. I can't state enough how significant it has been to have all of you supporting us. Every single encouragement - words and actions - helps us get through our days. If you ever think about encouraging someone, follow through and actually do it. We can attest to the fact that it makes a huge difference.

God has given us much reason to be thankful as He uses you to bless us. We pray that as you bless, you will be blessed by Him.

db

Soother

Drew loves his soother. Sucking is his favourite past-time. Even now, as he is heavily sedated to keep him from moving too much, his mouth still moves. Here is a video from last week showing Drew doing what he loves - being in Mommy's arms sucking on his soother.

Looking at videos and pictures of Drew from last week helps us cope with this week.



db

You guys are +++

This is Drew's big fat medical record.

It contains loads of info about Drew: his diagnostic work-up, specialist consultations, daily care plan. And other important details, like the fact that he gets exactly 69mL of breast milk every 3 hours. That's over 500mL per day for a guy weighing just over 3 kg, so essentially he consumes 1/6th of his body weight in fluid each day. To put that into perspective it would be like you or I drinking 9 or 10L of milk per day. As someone who attempted the "Chocolate Milk Challenge" (4L of milk in 1 hr) one lovely Thanksgiving weekend in Lethbridge over 10 years ago, I can attest to the fact that that is certainly not possible. Drew's medical record also contains such critical information as the total weight of every dirty diaper he has had since his birth (I'm tempted to put that into perspective for you as well, but that would require collection of data that even this scientist is hesitant to gather).

Drew's record also contains info about me that I would rather not know, most specifically the frightening details about my labour and delivery. Apparently it was "difficult" with "prolonged second stage labour", "failure to progress" and "delivery by delayed cesarean after two unsuccessful forceps attempts, due to mother's wish" (not sure who that refers to, since this mother certainly never wished for any of this).

And believe it or not, it also has information about you guys, our endlessly supportive family and friends. Because having a sick baby is such a stressful life event, every NICU family is assigned a social worker who assesses the family support network and facilitates access to hospital and community programs like spiritual care, financial assistance, and support groups. Our social worker's report on our personal support network is summed up as: "Karla and David's support is +++".

And we can attest to the fact that this is most certainly the case. For the last three weeks we've had a continuous supply of encouraging emails, prayers, parcels, cards, texts, care packages, meals, coffee cards, phone calls and visitors. And each one has given us the strength to get through another challenging day.

Thank you. This isn't something we could have lived through on our own.

kb

Surgery update

Drew's surgery went smoothly and as expected. Now we wait as he heals. He seemed to be somewhat uncomfortable post-up but his doctors and nurses were able to stabilize him without too much trouble.

Please pray that Drew heals without complication and that he not be in too much pain. Pray that we would have the endurance for this as we won't be able to hold him for at least a week. Drew has to stay significantly sedated while he recovers so we won't get to interact with our normally active little guy.

Thanks for your continued prayers and encouragement!

Here is a picture and a video from last week so you won't go through Drew withdrawal.

Sleeping in daddy's arms



The video is of Drew sawing logs. Make sure you have your speaker volume on as this is more for your ears as opposed to your eyes.

ps. Karla is currently enjoying her first glass of wine in almost ten months.

Surgery Day

Please pray for Drew as he goes for surgery today at noon. I've attached an email I received from my mom this morning. (I hope you don't mind mom)

Good Morning David & Karla,

This is Drew's "S" Day and I must admit to initial apprehension when I got up this morning. It is not an unusual reaction................anyway, I made my cup of coffee and got out my Bible as is my morning practice. And God is so faithful to meet us at our point of need. Once again promises from Scripture came to mind. We are to "Cast our cares on God because He cares for us" (and especially cares for our precious Drew). And He promises "Strength for the Day". My mind and emotions are quieted and my full trust in God is, once again, firmly placed.
We are praying much.................

Love Mom & Dad
a.k.a. Drew's Grandma & Grandpa

db

Getting some

Karla: "Those comments about perspective were kind of mean."

David: "Maybe. But I haven't finished my thought yet. I guess that's the risk of written communication."

Karla: "Now people might be worried about if they said that to you."

(This is part of why I love Karla so much. She is always thinking about others ahead of herself)

David: "Good point, I do appreciate the encouragement and the farthest thing from my mind was to make anyone feel bad."

Karla: "I really am getting perspective from this you know."

David: "I know, me too. Perspective is good and necessary but I guess I just wish the means were a bit different for us right now."

Karla: "Why don't you get some perspective."

Followed by much laughter...

Drew's perspective

Perspective

I'm not sure when Karla decided to claim the spot of family comedian. So far all of my blog post ideas are of the thought provoking or serious nature...I think...maybe that isn't true and what I think is thought provoking is mere child's play for the rest of you. You be the judge.

Before I proceed I want to apologize to all you grammar geeks out there (you know who you are). If I misplace, a comma or uses badder grammar or misuse! punctuation please forgive me. And maybe try to ease off on the nerd factor too. I always find it ironic that grammar geeks are so proud of this nerdy tendency. I digress.

I've noticed that when something alarming happens, something that shakes us out of our daily lives, the statement: "Really puts things in perspective eh?" is declared. Whenever I hear this I tend to bristle. After some reflection I think I know why I respond this way. Two reasons: a) I have heard the statement in relation to my own life plenty of times, and b) there is a need for us to seek or, at least, acknowledge the need for perspective. Part of my annoyance to the statement boils down to my attitude that, "I have plenty of perspective thank you very much. Why don't you get some."

Because I don't want to bore you with an overly long blog post, I will add more on the topic of perspective at a later date. To be continued as it were.

Before I end here is a quick update: Drew's surgery has been scheduled for Monday at noon. We look forward to this but the next week will be hard. Post-operative, Drew will be heavily sedated for about one week as he needs time to heal. We will miss his alert and squirmy awake times but know that it is imperative that his tracheotomy heals properly.

Please pray that the surgery proceeds without complication, that healing is fast and smooth, that Drew will remain properly intubated through the weekend (he likes to self extubate on Sundays) and that we will have patience during his times of sedated recovery. Also continue to pray for healing. It is easy to get caught up in the medical necessities of our situation. Pray that our hope remains on the One who gives us hope, not on the means by which Drew is treated.

db

Music Time

Here I am relaxing in my crib listening to my favourite song. Thanks to my good friend Renna for lending me her mobile. I love listening to the music while watching the crazy animals float above me. Sorry for the quality of the video. It's the best my daddy can do, although I gave him a bit of a pep talk about holding the camera more steady. Hope you're all having as good of a day as I am!

drew

And now I will brag just a little bit

It's quite possible that my child is a genius.

Early this week, at just two weeks old, Drew started to smile. At first just randomly for no apparent reason, but in the last two days he's smiled a few times in response to coaxing and silly faces from mommy and daddy.

(I choose to ignore any suggestion that this may be due purely to the sheer volume of silly faces we make on a daily basis rather than a demonstration of cause and effect)

According to my mommy magazine, babies are expected to start smiling between 8 - 10 weeks of age. So, Drew has apparently met this milestone in 1/4 the time it takes a normal child. At this rate we expect that he will defend his PhD before his 8th birthday.

kb

Photo-op Sundays

Like his dad, Drew has discovered that if you're gonna be sick, it helps to be impossibly cute and charming. He has amassed quite a crew of followers in the NICU and each morning shift begins with a string of visits from his favorite nurses. Here are some pics from Photo-op Sundays, during which Drew pulls out his ventilator tubes and gets a few hours of freedom before being re-intubated.

February 28, 9 days old



March 7, 16 days old

thanks for bearing with us as we get this blog thing figured out!
kb