Welcome

This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.







This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.





The content might sometimes get a little heavy. As an understatement..







WARNING:







People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.





If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.



I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.





Welcome along!





Sunday, April 28, 2013

Welcoming Janaia: Part Two

I know the big question on all minds.  You are wondering if Janaia is PBD free or not, and why I haven't mentioned it.  The answer is simply that we still don't know for sure.

When she was born, I felt her skull.  Her fontanels were totally NORMAL.  A huge sigh of relief.  She was interested in nursing right away.  She seemed very "normal and healthy.  I went home felling optimistic.

But Janaia had a tongue-tie like her oldest brother, Caeden.  And soon nursing was not going well.  She kept me up all night, for the whole first week.  We had her tongue-tie released, but things were still not going well with nursing.  She went a week without any weight gain.

I was quickly heading for crazy-town.  Lack of sleep, worry and frustration over nursing and weight gain, and the whole thing just felt so much like a repeat of how it went with Joel...  and I was just flooded with memories and feelings about Joel.  Janaia's features started looking more and more like Joel's.  I didn't feel optimistic.  I felt worried and sad.

Those first two weeks were doozys.  Metabolics didn't even get us in for blood work until she was two weeks old.  Which meant we had two more weeks to wait for a confident answer.  To top it all off, my milk supply was dwindling, and we had to use some formula.  We had to rent a double breast pump and I was back to pumping and bottling milk, like I had to with Joel.  I had to suppliment with formula too, a real disappointment. 

But this is when things started to turn around.  Janaia started to gain some good weight.  By the middle of her third week, she was 8lbs, 14oz (birth weight was 8lbs, 4oz).  I got (slightly) more sleep because Steve could bottle her for the first watch of the night while I got three hours of sleep.

To sum it up:  We still don't have the blood work back.  It's still hard at times, I might be a bit paranoid as I watch for any signs of PBD.  As nothing big has appeared, and as she has gain more weight in a week than Joel did the whole first month, I feel more optimistic again. 

I am still not getting much sleep, but she is a very good natured baby and doesn't cry much.  I think the problem is a bit of GERD, or 'baby reflux.'  It seems like she is spitting up a lot, gagging, etc., during sleep and that wakes her up.  She's fine if I hold her, it's just laying her down that is the trouble.  Yes, in order to survive, I sleep sitting up, holding her securely propped in my arms.  It is totally against the "lay them down flat on their backs in only a sleeper" rule, but sometimes increasing one risk very slightly is better than increasing the huge risk that in an overtired state I accidentally set the house on fire, or end up with a complete breakdown.  It's not ideal, but it works better than the alternative. 

And I'm really hoping that if I get my milk supply up to snuff so we don't need formula, maybe the reflux/spitting up will get better and she'll sleep better lying down in her bassinet.  She now prefers the bottle, and it is a bummer that I STILL don't have enough milk and have to use some formula.  I'm not sure I'll ever get her back on the breast, but for now we are not worrying about that, because things have been way to emotional around here as it is...

  But so far, compared to both Caeden and Joel, she cries a lot less than either of them, and has lots more happy, bright, alert times that Joel did in the first three months.  So far, no sign of the colic that plagued my first three months with Caeden.  So far.  So far she is very easy to settle and loves to cuddle.  We are totally in love with her.  Neither Steve nor I can get enough of looking at her bright eyes and perky little face.  Every day I feel so blessed, and every day I try not to worry or be sad, thinking how awful it would be to get back the blood work if the news was PBD.  She'd still be worth it, every bit of it.  But it is a heck of a price, the pain that would come with the blessing of having her.

I know we have been covered in prayers.  Thank you one and all.  It is a test of faith, for sure.  Here are the words from another Bible verse song that I have been singing:  "Every good and perfect gift comes from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows."  Thank you Father, for my good and perfect gift.  And that You do not change.

Now, some pictures!  :)



Friday, April 19, 2013

Welcoming Janaia, Part One

My daughter is two weeks old today, but of course, with a new baby in the house I have not been able to post here!

I should, in fact, be sleeping right now, and I am going to toddle off shortly, but I thought I'd at least take 20 mins and see how far I got in updating you.

Janaia Lee Smith was born on April 5th at 11:18pm.  She weighed 8 pounds and 4oz.  She was 21 inches and 3/4 long.  (you pronounce her name "Jan-A-ah" or "Ja-Nay-ah," either way, tomato, tomato.)  Her name means "God is gracious," for those who like to know.

For those of you remotely interested, here is a brief recap of her birth.  I sprung a small leak in my waters on the morning of the 5th and felt sure that by evening I'd be in labour.  Sure enough, at 7:40 regular contractions started every 5 minutes.  After only 4 of them I phoned the midwife and we drove to the birth centre.  (Since Joel was born in only 3 hours, I wasn't waiting any longer)

We arrived at the birth centre a little after 8.  After the prelims, I got into the huge bathtub full of very warm water.  There I managed the pain of the contractions fairly well for about two hours.  It was great, actually.  I mean, painful, but great.  :)

Then things started to get really intense.  I was only at 7 cm and was very disappointed because the contractions/pain had really intensified.  They offered me nitrous oxide and I took it!  This was at 11:10.  I had a contraction and my water broke.  Then I had two super massively painful, intense contractions and at the end of the second one, Janaia's head was crowning!  Between 11:10 and 11:18 I went from 7cm to full delivery of my beautiful little girl!

She floated out into the water and they handed her to me.  She cried briefly and quieted as I held her and cried myself.  I was so blessed, I had gotten the birth (excepting the pain, of course) that I had really wanted, in the birth centre, just Steve and I and the mid-wives and doula.  It was quiet and peaceful and so private.

The midwives checked us out for the next three hours, her blood sugar was great, she passed all her tests and I did OK too.  They released us, and we headed home for our new life together.

Now I better sign off and try to sleep.  I have had minimal sleep for the past two weeks, but that is for another day.  For now, here are some pictures.  :)