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!  :)



6 comments:

  1. She really does look like a little doll! Praying for daily strength for you! Tamara

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  2. Hi Karen, What a beautiful baby girl!!! I have checking your blog all the time for the news and after a crazy week away from work, checked today to see this precious little face. Wow, just amazing and beautiful. Congratulations to you your whole family. You are always in my thoughts.

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  3. Oh Karen...she is so beautiful....and PERFECT. I'm sorry about the feeding issues, those seem pretty common...I had sooo many with both of my babies. I am praying all blood work is fine....so many encouraging signs that all is well with her. Keep your faith. good luck with the sleep...have you tried one of the Fisher price Rock n plays instead of a bassinet...it safely positions baby in an elevated position. I know so many people who were saved from the spit ups and reflux issues with those.
    Karaleen

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  4. My goodness we have a lot in common. IN addition to the GD, I also had awful times with nursing. I gave up on my first, successfully nursed my second until he was 22 months old (with supplementation) and had to pump and bottle feed my third. With the third I took 21 pills a day.

    Is Domperidone available to you? I swear that it allowed me to pump enough to feed him until he was one.

    HUGS

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  5. Oh Karen, She is so beautiful!! For some reason, she just makes me think of what Queen Esther would have looked like with that thick dark hair, those big bright and intelligent eyes and perfectly shaped lips. I hopes things soon start getting easier with the feedings. It must be so difficult waiting for all for the bloodwork. It is always the waiting the is the hardest. Glad to hear she is gaining weight though! She looks wonderfully healthy! Wishing you good long sleeps!

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