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Thursday, April 28, 2016

April 28 Update: Of Spilt Milk and Caffeine

What? Caffeine? Addictive?!

Today Jayna would have been 35 weeks in the womb. She is 6 weeks old and weighs 4.3 pounds.  Since our last update we've discovered that caffeine really is addictive. Who would'a thunk it! Jayna was put back on caffeine this past Saturday when it became apparent she was not yet able to sustain an acceptable respiratory and heart rate without it. It seems she wasn't ready to quit her morning coffee cold turkey. Little munchkin!

The past week has been rather uneventful as we continue to wait for Jayna to gain the strength she needs to be discharged from hospital and start her life at home. When either of us show up at the unit, the nurses back off and we're in charge - we change her, bathe her, hold her, and Candy has had ever increasing success at nursing her (exciting!), all of which has has been encouraging, priming us for the impending hand-off. So although we've had our fair share of language issues with the staff at NICU here, and are still trying to get used to the somewhat looser approach they take in the care of our little dipper, all in all I'd say we've been able to communicate with them at an acceptable level. We've just had to exercise a little assertiveness, something which Candy is loathe to do (yes, you heard it here first!), and I have a hard time doing without being rude, towering over people, and appearing maniacal. I now prefer to sit clean shaven (sort of), and bespectacled when I assert myself. People seem to respond better to me that way. Imagine!

No More Bleed!

Great news! This morning Jayna had another head ultrasound taken, and it came back clear; the brain bleed is gone! Praise the Lord!

Spilt Milk

On the home front things are continuing to move forward, as in - I am approaching 'crazy' at an incredible rate of speed. You see, I know school needs to happen; I decide when I wake up in the morning that it's going to happen; and then it's dinner time and it hasn't happened! At least not to the level I envisioned it should. I've slowly been discovering that the kids don't want to do school. They'd much rather play. I know it should have been obvious, but more often than not I need to learn obvious things by experience before they become truly obvious to me. Maybe I'm not alone. At any rate, our kids need to be motivated to do school and I need to be the motivator.  The problem is that I have a hard enough time motivating myself! I was ranting to Candy about all of this earlier today in the car as we drove to the hospital and she just smiled knowingly and said, "Really?" then went on to explain to me how important it is to make a plan at the beginning of each week, deciding which days we'll be doing school, and how each day will look. So, rather than lament the lost time this week, in essence crying over spilt milk, I'm going to suck it up and push through. All with the help and grace of my Lord, Jesus! Guess what I'll be doing Sunday evening? Enjoy the video!

Thursday, April 21, 2016

April 21 Update: Getting Schooled

Today Jayna was bottle-fed for the first time! We arrived at the hospital while they were prepping for feeding time and were told that they had planned to try the bottle for one feeding today, just to see how she would do with it. So Candy nursed Jayna for a brief period until it was apparent she was too tired to continue, (breastfeeding and bottle feeding are like exercise for preemies), and then we transferred her allotted milk to a bottle and Candy was able to feed her that way. What a blessing it was! She sputtered, she coughed, she burped (my kinda girl!) and all of this was so precious - driving home (to me at least) that we actually have a real baby on our hands here! Sounds weird I know, but that's me. All she didn't do for me today was fart, but I'm sure that will come.

Jayna still requires some additional oxygen to keep her levels acceptable, but she has been having fewer dips and spells and has also been tolerating her feedings very well, with fewer spells at the tail end of her feedings than she had been having. They took her off of caffeine 2 days ago and are closely monitoring her heart to see how she will respond. The caffeine was to treat AOP (Apnea of Prematurity) which are spells where Jayna would stop breathing and her heart rate would drop below 80 bpm (normal heart rate for her should be 140-180 bpm). This little shot of morning joe would stimulate her breathing and keep her alert as well as regulate her heart rate. After 7 days off of caffeine, and a clear demonstration that she can handle these dips without it, she will have to go another 5 straight days without an apneic spell, and without requiring additional O2, before the docs will release her into the big wide world. Jayna will be 35 weeks next Thursday. So the earliest we could see her home would be two Wednesdays from now. Praise the Lord!! Please keep praying for her that all of these things will line up at the right time for her to be able to come home.

On the home front, this week has not been as successful school-wise as last week, but the kids are all still alive, well-fed, and happy AND I am happy to report that all of the winter stuff has been gathered, washed, and put away for the season! I can imagine someone might say, "ooh - that's an accomplishment?!", but let me tell you, this is no small task in our home. Seven kids and two adults worth of winter coats, boots, hats, scarves, mitts, neck warmers, snow pants... honestly, it actually feels like you've just won an award when you've completed a task like this! But I digress...

Last night, we took our first family trip somewhere since Jayna was born; a drive to a local park for some fun in the evening sun (and ice cream bars, yah!). We all needed that. It felt great to go out together and do something as a family. The pics you see here at are of Candy schooling her hubby on the court. She is definitely recovering well from that c-section!

Friday, April 15, 2016

April 15 Update: On Marriage, Hospital Transfers and Oatmeal

Yesterday our precious peanut was finally transferred to a hospital closer to home and in our own Belle Province. We had about 2 hours notice of the transfer, but thankfully Candy was already at the hospital when we found out so she was able to travel in the Transport vehicle with Jayna. Once they arrived, and I was able to leave the fracas at home to join her, we were orientated (in quite broken English) as to the policies and procedures for Jayna's new digs. We were very impressed at the effort everyone at the new hospital made to communicate with us in English. They were gentle and patient with us as we asked for clarification on different things. This makes all the difference, I think, to whether our experience there will be a good or a bad one.

Jayna is growing! I was amazed when I saw her yesterday at how much she'd grown in the 4 days since I'd last seen her. She's now 3.5 lbs and showing some definite chunk!! Her oxygen levels are improving as well, which has been very encouraging. We were told before she was transferred that in the move from one hospital to another, she was essentially going from one of the healthiest babies at the one hospital, to one of the 'sickest' babies at the other, so we could expect the staff at the new hospital to be on edge until they were confident Jayna's condition was stable and improving. In keeping with that estimation, Jayna is back in an isollette (incubator) for at least 48hrs. Also, if we want to handle her, we must wear a gown and latex gloves. Not sure whether that is a 48hr thing as well, but that could end up a point of contention with us as we have been enjoying skin to skin care with her for some time now. To not be able to touch her without gloves seems a little over cautious and even detrimental to Jayna's overall development. So pray for us that we will be gentle in our communication, and that this new NICU will lighten up a bit and let us hold our child without a latex barrier. Overall, though, we are excited to have her closer to home, and impressed with what we've seen of the staff here in Quebec.

On the home front, we had decided this past week-end to try to establish some semblance of a routine in our lives for sanity's sake. We decided to treat the visits to the hospital as we would a job, where Candy leaves early-(ish) for the hospital each day, and I stay home and do school with the kids (along with meals, laundry, cleaning - whatever). After week one, I have re-discovered that I absolutely love teaching the kids, but before anyone goes and gets the idea that I am a super-dad, let it be known that laundry and housework did not really get done this week. The kids are all still alive, and not TOO hungry, so I believe overall the week was a success here at the house, but I have a lot to learn about managing a home. It seems that we are in an either/or situation here. Either the housework and school get done and the kids go hungry, OR school and meals get done but the house goes to pot.  Thank God for week-ends!! All you homeschooling moms - God bless you.  You have my utmost respect and admiration.

Today Candy and I celebrate our 16th anniversary. Sixteen years ago today, at this very moment, 08:50, I was scarfing down my step-mom's amazing oatmeal; my last breakfast as a single man. Today we celebrate our glorious union and guess what's for breakfast?  I was told before we got married that I should think long and hard before having kids, that they would "suck the life right out of me". Now, at one child every two years since we said the words, "I Do", I can truly agree with the thinking part of that admonition, but nothing would 'suck' more than life without these precious kids. We're better for having had them, they truly are a blessing from the Lord, and my amazing wife is truly a fruitful vine at the heart of our home.

Saturday, April 9, 2016

April 09 Update: To Fret or Not to Fret

Moving... moving... moving...

Yesterday we were told that Jayna will be transferred sometime soon to a hospital in our own province, (we live in Quebec but she is presently at an Ottawa hospital). I will admit that when I first heard this, my heart sank. I began worrying over language issues, quality of care for Jayna, parking issues, and the list goes on. I started to panic and think of ways we could possibly persuade the medical team in Ottawa to let her remain there and forego the transfer. The issue was fast becoming a mountain in my mind until a bit later in the day after a conversation with my wise wife. Simply put, my response had been one of fear and not of faith and was an indicator that I had begun to put my trust in man. Over the course of the evening, and into this morning, I was able to work through this and come to a place again where I realize that wherever Jayna goes, whatever her care, at the risk of sounding cliche, God is in control. He knows where she will be, and He will be with her there as He's been with her everywhere else. Her Great Physician is a travelling doctor who will not leave her side. Considering that this travelling Doctor is the One who formed her inward parts and knit her together in her mother's womb, I'd say she's in pretty safe hands! My worrying won't accomplish anything but a little loss of hair pigment.

Around 2 months before this whole affair began Candy had been reading through the book of James in the Bible and the Holy Spirit impressed on her heart how important it was going to be for us to be patient and endure. That whole principal of patient endurance kept coming back to her and as she shared it with me I could really see that the Lord was speaking to us, though at the time we had no idea what was coming. Up to this point I've been sort of coasting along, but it has finally begun to sink in (I'm a little of a hard-boiled egg when it comes to learning life lessons), how much I need to rest in Jesus, and through prayer and quiet rest, allow Him to bear this burden rather than try to figure everything out and tackle it all on my own. In this way, I can be patient and endure this thing with joy and peace rather than anxiety.

So fast forward to this morning... Candy and I got up early, scarfed down a quick breakfast and left for the hospital as soon as we could, picking up my mom and sister along the way. We wanted to be there for Jayna's 11:00 handling time so Candy could hold her and try to introduce Jayna to nursing. When we arrived, we learned that the doctors had not done their rounds yet. This was great news for me as it meant we would be there for rounds, (our first time since she was born), and having the entire team there to answer our questions is an ideal situation. When the team of doctors arrived for rounds, who would be the Neonatologist on staff but a man we knew from a church we used to attend in Ottawa. In fact, I had taught his eldest son in children's church there! Though it had been 10 years since we'd seen him, he recognized us right away and we had a great update on Jayna's condition and detailed replies to our questions complete with video animation (he showed us on his iPad what Jayna's heart looks like). I felt so blessed to know that he was there, a Christian doctor taking care of my daughter. I was so encouraged by these things and knew that all of this had been orchestrated by the Lord. It's like the Lord was just putting an exclamation point on all that I'd been meditating on.

So Jayna is in a cot now, no more incubator or heated bed. Her O2 needs are still higher than they should be but they were able to reduce that again this morning after suctioning more goop out of her nasal passage. I guess she's still fighting this cold. Not surprising when you consider most of us take around 2 weeks to fight through a cold and WE  have fully developed immune systems. She has a slight heart murmur, but nothing of any concern. There's no plan for a repeat brain ultrasound until she's ready for discharge, and another x-ray of her chest yesterday turned up no sign of any lung issues. They will hold off transferring her to this other hospital until her oxygen needs stabilize. As of now it's day to day - they will decide each morning based on her condition whether or not the transfer will happen. This is fine with us. Again, we know who holds tomorrow!

Wednesday, April 6, 2016

April 06 Update

Mommy and Daddy's foreheads feed baby Jayna!

Sound asleep....
As some of you may know, we were waiting to hear the results of Jayna's repeat brain ultrasound yesterday. Good news - the brain bleed has not grown, and is showing some resolution! Praise the Lord! Jayna is still on O2 at varying levels, and everyone is still in the dark as to the cause of that - though the prevailing theory is that she's still getting over a cold. Apart from that, she is growing as she should. She is still under 3lbs, but should have that benchmark broken by week's end if she keeps gaining weight at the rate she has been.

As a family we are all looking forward to the day when we can get back into some semblance of a workable routine. Housework, homeschooling, groceries - all of these things are kind of in throw together mode right now as we've added daily rides to and from hospital and recovery time for Mommy, who I'm afraid feels her only raison d'ĂȘtre at this moment is to pump, eat and sleep. She has been staying positive though and with a little help from the rest of us is allowing herself the time she needs to regain her strength. Life will be changing all over again once Jayna begins breastfeeding (right now, she's still only being tube fed), and then again when we finally get the little pink bundle home to her family!

On a different note, I want to convey our thanks to all who have helped us in some way over the past 4 weeks, and who continue to help by way of prayer, encouraging notes and other material things. We received dinner every day between March 11-31 as well as frozen meals that we've been able to pull out in a pinch since then. We've been given grocery gift cards, monetary gifts from church, friends, and family, restaurant gift cards from family, baby clothes, crib and other items in such a shower of blessing that all I can do is shake my head. People have come by to help us clean our house, bless the kids with McDonald's lunch and visits from family and friends, and a fresh supply of deadly (ouch, my foot!) lego to keep them occupied, and just to say hi, and this has all been greatly appreciated. We do intend to do up individual thank-you's for everyone, but we'd like to also give this sort of 'blanket-thanks' to you all! God bless each one of you.

The view out our window on April 06
Right now as I look out my window at the blizzard taking place outside (cue the laughter from all you Arctic dwellers), it's hard to believe that gardening season is just around the corner. Not that any of us here have a green thumb, I'd say muddy-brown at best, but we do intend to do our best to stick something in the ground this year that we might be able to dig up later on and eat. It offsets ever so slightly the cost of feeding the ravenous teenagers in our midst. But for now I just sit and watch the snow fall.

God is good! 

Saturday, April 2, 2016

April 02 Update: Moving to a New Unit!

Since our last update we learned that baby Jayna had caught a cold. Most likely the same one all of us were fighting when she was first born (her first gift from Mommy and Daddy!!). After some blood work it was determined that it was a viral rather than a bacterial infection so she would not need anti-biotics. The doctors were quite sure her need for O2 was due to this cold she was fighting and this has turned out to be the case as they have been able to steadily ween her from the O2 so that now, with the cold on it's way out, she is on a very minimal amount. Hopefully she'll be off it altogether within a day or two! Jayna's also been moved from her incubator to an open air bed which means easier access to her during our visits.

The great news for us this morning is that Jayna was moved to the newborn observation unit within NICU. She's no longer in the super intensive care section of the unit, which tells us that the level of concern over her ability to thrive has diminished considerably.

More good news is that Candy's been producing more than enough milk so Jayna has been on a steady supply of the best milk money can buy.  On top of all this, Candy's blood pressure has been coming down so she's been able to cut back on the meds significantly. Praise the Lord!

So we continue to watch Jayna's condition grow stronger and stronger and are so excited for the day she'll finally be able to come home to us. Our youngest daughter keeps praying, "that Jayna will be able to come home from the hospital but not too soon so she won't have to go back to the hospital". It's just a reminder to us to be patient and trust the Lord's timing as His timing is always best; never too late, never too early!

Next hurdle will be Tuesday's brain ultrasound!

Thanks again for all your prayers - God is good!