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Sunday, May 22, 2016

May 22 Update: Homecoming!

Part 1: The Anticipation...

Praise be to God, the day has finally dawned! Our little Jayna will be discharged this very afternoon, and will brighten our home with her arrival. In the hope that I can in some small way convey to you all both the anticipation and the thrill of her arrival, I've decided to write this entry in two parts; a pre and a post homecoming. Jayna has been off oxygen since Wednesday, May 11 (notice that lovely "0") and off caffeine since Saturday May 14. She has gone 7 days without incident since the caffeine was removed. We took everyone to visit Jayna in the hospital one last time on Thursday and brought in her carseat at the doctor's request. Neither of us had been aware before, but preemies must pass a carseat test before they can be discharged. This test consists of seating the sleeping child in their carseat and monitoring them for any breathing/heart/oxygen issues for 30 minutes. She failed the first test on Thursday, but passsed with flying colours in the re-test 24 hours later. That was the last hurdle. Now only the finish line remains!

Everyone here is so excited, but none so apparently as our youngest two; 6 and 7 years old. They, with all of us, have prayed and thanked God each day for Jayna's safe arrival. They are up early with me, eagerly discussing between them what life will be like here with their new baby sister. On Friday our 13 year old son and I worked energetically on our bedroom, rearranging it to accommodate Jayna's crib and change station while the rest of the kids broke into teams, each taking a section of the house to tidy. Below is a picture of the part of our bedroom I've obtained security clearance to post on the internet. Candy and I have been surveying this scene with expectancy since Friday. I'll drop my dear wife off at the hospital this morning, come home to see the kids off to church for 3pm, then head back to the hospital to pick up our little peanut for the maiden voyage in our luxuriously silver and rust coloured 2002 Elantra GT. I feel like renting a Cadillac! But lets keep what's important, important.

Part 2: The Thrill...

Slight change of plans - we were late getting to the hospital, so rather than drop Candy and return for her and Jayna later, we just stayed together, received a flurry of last minute instruction from the Doc and nurses, and left the hospital at 2:00, WITH JAYNA!!!

She's home, and rather than run on at the mouth trying to put words to the incredible feeling, I've strung together a little v-log, accessible below, for you all to see. I'll apologize in advance for the lack of polish, and the fact that it ends rather abruptly. My eyes were beginning to cross towards the end there...

Praise the Lord!! Thank you all so much for your continued prayer. It has been a long journey, and one that has only just begun, but we are so grateful to have her finally home. As I write this, the children have yet to see her home - but they will be returning from church soon and then the party will begin in earnest. Soooo exciting.

Friday, May 13, 2016

May 13 Update: Who Needs Oxygen Anyway?!

Our little beauty was taken off of oxygen on Wednesday! Now, they will only be giving her supplemental oxygen during her feedings. Jayna is behaving more and more like a newborn: her wakeful times are lengthening in duration, she’s fussing more when she’s uncomfortable, and she’s really chunking out! Her feeds are more frequently by bottle now rather than gavage tube, though the nurses still have a difficult time keeping her awake long enough for her to complete a bottle feed. Candy was able to nurse her for 20 minutes the other day, a breakthrough for sure. She is till having apneic spells where she will stop breathing altogether causing her oxygen sats to plummet. We’re being told that if she can go five straight days without a spell, they will remove the caffeine. After that, she’ll need to go another five days without a spell before they will feel comfortable discharging her. So at the very least, she will be in hospital for another ten days. Interestingly, we’re finding this period a bit more difficult in a way because now that Jayna is behaving as a newborn, her need for extra care is not so apparent to us, making it harder to leave her there each day. Our other children are feeling the strain as well. Just the other day, our seven year old daughter came to us and said, “Daddy, it’s sad when a member of your family is in the hospital, and they’re taking so long to come home. You just want them to come home.” I couldn’t have said it better myself. 

Though it is sometimes sad, there is also hope. I was reminded last week that hope, the hope we have in Jesus, does not disappoint. So we press through, in hope believing, and know that it is simply a matter of time before the peanut joins her family at home. Thank you all again for your prayers and support. I've added a little video below, isn't she sweet!

Friday, May 6, 2016

May 06 Update: Of Flu's and School and the Little Dipper

Jayna is today 5.005 pounds of pure baby. Apparently Mommy's got the goods! She's due for another echo of her heart today, as well as an eye test; both routine. I mentioned last week that she had been put back on caffeine, and that has not changed. Up until today, she had not had a brady (heart) dip for an entire week, however this morning her heart rate dipped to 65 for 15 seconds. She did bounce back from that without intervention though, which is a good sign. Candy spoke with the doctor yesterday and she explained how the caffeine, Jayna's heart rate, and the oxygen saturation in her blood are all interconnected. She said the reason they had kept the caffeine going despite no brady dips was that Jayna had still been having O2 desaturations, (O2 level dipping below 88 for a prolonged period). They had thought to remove the caffeine again today since she hadn't had a brady dip for so long and has been averaging only one O2 dip per day, but that may not happen now given this morning's episode; we shall see. You may be wondering what the big deal is about the caffeine - basically it's one of those milestones we need to see before she can come home. I guess sometimes you just have to quit the coffee before anything good can happen in your life. Other things that need to happen are the successful withdrawal of additional O2,  and a demonstration that she can stay awake long enough to get all her feeds in by bottle or breast. Our little dipper is incorrigibly snoozy. With all our other kids, it was possible to wake them when they'd fallen asleep feeding, but Jayna is just too interested in the back of her eyelids, which necessitates any remaining feeding being given by gavage tube. Our oldest son, born at 35 weeks, was also a pretty sleepy baby. It is quite normal for pre-mature or pre-term babies to be sleepy. I think I might be a preemie in disguise.

So flu kinda' rhymes with school but that's about as good as it gets. Last Saturday, we had a scary episode here as our middle son abruptly came into the living room from bed announcing with tears and a panicked look on his face that he could not breathe. One of our other children had had a flu earlier in the week, and he had apparently caught it with a vengeance. We prayed, then immediately administered an asthma puffer, threw him in the car and were off to CHEO. It was 10:20pm. At 4:20am we crawled up the steps and collapsed into bed after blood work, a dual shot of antibiotics, and a steroid for his breathing. I finally succumbed to the bloomin' bug yesterday, and I've been wandering around the house uselessly ever since; school's out!

Keep us in prayer. We're struggling to push through, "But thanks be to God, who always leads us in triumph in Christ, and manifests through us the sweet aroma of the knowledge of Him in every place"(2 Cor 2:14). I say this from a place of need and trust, because I don't feel very triumphant at the moment. Here's a verse I read this morning, that I hadn't noticed before, "...if you are not firm in faith, you will not be firm at all" (Isa. 7:9b). We need to live our life by faith, losing ourselves and embracing Christ. If we cannot be firm in that most fundamental of places, the rest will not work right, consigning us to frustration and rendering us unfruitful. Please pray for us, that we will exercise mountain moving faith, and trust the Lord with all our hearts!