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Wednesday, 20 October 2010

Feeling deflated

Well, the potential of a dream baby are quickly fizzling before our eyes.  And we are scared stiff at what this could possibly mean.  Sivana started breaking out in tiny spots at five weeks (typical of baby acne which typically kicks in at six weeks); however, this was how everything started for Ethan, too.

We have been watching the spots grow into an overall red splotches all over her head and face (just like Ethan).  And she is now extremely restless during the day, unable to sleep for long periods of time, crying and fussing pretty much non-stop.  I thank God the nights have not been affected yet.  She typically wakes up only once or twice in the night and goes right back to sleep, which allows me to find some energy to deal with the day.  Pediatrician says it is likely seborrheic dermatitis which could go away on its own OR could progress into eczema hence allergies... argh!!!!

Thank God Duane has taken holiday time as he has been the one to do the three to four hours a day of driving Isabel to and from school.  If I had to fit that kind of dead-time-space into my day, I think I would go crazy.  I barely feel sane right now as it is!

And what have doctors said to-date about all the appointments we've had? 

Sivana's left kidney looks the same as it did in fetal assessments; however, she now has a cyst on her right kidney.  They are not concerned about this as it appears to be a "regular" cyst and because she is doing so well (she weighed 9 lbs 14 oz at six weeks) they are not concerned.  She is however being referred to a kidney specialist.

Anika's VCUG came back positive for vesico-ureteral reflux (level 3).  Basically, she has backflow up towards her right kidney and they want her on low-dose antibiotics indefinitely until the valve strengthens.  Are you flippin' kidding me??  Isn't there more damage done by long-term use of antibiotics than the occasional backflow??  Obviously we have yet more research to do and other specialists to meet with including a bladder specialist we are now being referred to.

Isabel's spasms are apparently myoclonic seizures!  We did not know this and thankfully we are able to treat these now, too.  But this means an increase in her current anti epileptic med PLUS an additional medication which has to be introduced extremely slowly due to its risks.  But if we did NOT introduce this new med, these "minor" seizures would get worse (which is what they had been doing) which could result in serious issues swallowing saliva and risk of death should they occur in the night. 

Ethan has been having breathing issues so we have had to introduce inhalers twice a day which he has adapted to very well.  We have named his puffer Puff-Puff and he speaks with a cross between a Mexican and French accent.

We now have Melina living with us full time until court proceedings can begin to change custody arrangements.  This one I will not delve into too much details about but suffice it to say that I ask that you pray for Melina during this time.  She has expressed for several years now that she is tired of being pulled between two completely different worlds and wishes she could have a home base.  I thought this very fair and expressed my support in that desire (thinking full well she would opt to live at her dad's given that we have lots of rules, structure, accountability, more conservative faith, and a very hectic household of small children who constantly barge in on personal space).  To our surprise, she expressed wanting to live here!  This is not being met with open arms by her father and what we had hoped could be a fair discussion is turning into a battle.

And why??  Especially given that nothing is ever carved in stone!  Especially given that neither parent would EVER be forbidden from seeing Melina!  I am baffled at the resistance and am preparing to stand behind Melina in whatever she chooses.  She has exhibited incredible maturity in her reasoning and we support her 100%.

So prayers for grace, wisdom and a loving heart as we embark on this part of our journey.  We are open to see where we may be wrong, but trust that we are doing what is best.  Bottom line, I am feeling overwhelmed these days and wondering if this is what every parent endures?  Barely keeping their head above the water?  Feeling in certain moments like your drowning?  Or wishing you were?

Would you believe I have had to stop typing five times now to deal with a screaming baby... rock her back to sleep... only to have her wake up screaming again and again and again? 

Why do some people get the perfect babies that sleep and eat and sleep and eat and sleep and eat and never make a fuss?  What are we doing wrong???

On that chipper note, wish this entry could have some humour to it but I am feeling too deflated to look on the bright side of anything these days.  Hopefully the next time I touch base, I'll feel more like a human being who actually accomplishes things around here instead of some incompetent mother who depends far too much on her husband's help, keeping him from getting out in the fields... just feeling like nothing but a leech.  RSVP anytime to this pity party with a few prayers!


Cindy said...

Wow! That's a lot. I think under the current circumstances it would be natural for you to feel that "when it rains, it pours!"

You are doing everything you can, and are a wonderful Mom.

God will continue to help you through this. I will continue to pray for you and your family.
Your cousin,

Anonymous said...

Rita, you are so beyond amazing. Like Cindy said, it's natural to feel overwhelmed but i think you are probably the strongest person I know. Life never throws you more than you can handle and it's clear that you are capable of superhuman things based on the curve balls you catch seemingly every day. thoughts are with you.