Monday, February 28, 2011

She needs us Today

Tomorrow will hold answers for us.  Tomorrow we go back to the cardiologist and hopefully schedule the surgery that will fix Reagan's heart and bring our family back to a reasonable level of stress and uncertainty.  Tomorrow  I can trust that Reagan's doctors are doing all they can to make sure she has a full, happy life.  Today I want to talk about a little girl who doesn't know that such a tomorrow could exist for her.  Her name is Olga and she has a family who wants her desperately, though she does not yet know that.

Olga turned five last month. She has spent the last five years in an orphanage in Eastern Europe, without the love of a mommy and daddy- simply because she arrived in life exactly as God designed her. One chromosome too many, and her fate was sealed from birth.

Sealed, because in Eastern Europe, babies who are born with Down syndrome are deemed unacceptable at birth. They are discarded as cast-offs of society, and when they turn five they leave the only home they've ever known...

And I wish I could say that for most of these children, leaving that home meant going to a place of safety, a place of happiness, a place where they would finally know the love of a family...know what it meant to be cuddled or sung to or read to, tucked in at night, prayed for, loved.
Instead, they are taken to a place that most people wouldn't leave their family pet.

A place of living hell, where they will never know the tenderness of a parent, never know the security of being raised in a family, and there they will stay, one ugly, pain-filled day at a time...until they die.

These are words written about Elizabeth, an orphan on Reece's Rainbow who had been transferred to a mental institution, waiting for a family to step forward for her.

I wonder where she thought she was going as they led her out of the orphanage that day. Did she think that maybe it was finally her turn? That they were taking her to her forever Mommy and Daddy?
And when they instead took her inside that dreadful place, when they shaved her head and tied her to a too-small metal crib
when they turned their backs and
when they left her confused, terrified,
in a room where the wails of schizophrenic adults echo through the cold air
what was going through her young mind?
Did she wonder if she was being punished?
How long did she hold out hope that this was only temporary?
That any minute, they would come and take her back to the baby house
to her baby dolls and teddy bear,
to her best friend, Angelina?

Did she long to free her arms from the restraints
to cover her head with her hands to drown out
the scary noises
the scary sights
the scary smells?
That could be my Reagan….

It could be your child.
And what if it were?
What if you woke up one morning
and by some hellish, twilight-zone twist of fate
your child wasn’t still tucked into that warm bed down the hall,
what if your child was trapped
across the dark sea
in that nightmare that is
the institution?

Rescue those being led away to death; hold back those staggering toward slaughter. Proverbs 24:11
Olga is being rescued today, thanks to so many of gave so much and created such a large grant that a family was able to step forward and start the process of adoption.
The Abells have done so much already, towards rescuing Olga. I can't even imagine all the paperwork and prayer and emotion and finances that goes into an international adoption. They have done numerous fundraisers, and will continue to do so until they can bring Olga home.
Through the help of so many, a grant of over $13,000 has been raised for Olga's adoption. That grant is set aside for the final travel costs and fees that it will take to bring Olga home. It will take every penny of that and then some.
Right now the Abells are in need of raising the $7,000 that is needed to submit their dossier for Olga. Without that dossier we don't even know if Olga has been transferred yet. Here in America you just pick up the phone and ask these questions. But here in America we don't tie five year old girls to cribs to keep them from climbing out.
The Abells need to submit that dossier as soon as possible- at the very least to find out if she has been transferred already- because I know an army of prayer warriors who is going to want to know that piece of information as well. And at the very most, it could be able to hold Olga at the baby house until the Abells can rescue her. I wish I could say with certainty that she won't be transferred- truthfully we just don't know that.
Olga has been so heavy on my heart for months- friends, I want you to know that I DO trust that God has a plan here.
I prayed like crazy for a way to help the Abells. I truly believe that there is a network of people who love Olga here in blogland...a net that is woven by God and is stretching out across this blessed country we live in, and even beyond to generous hearts in other nations. I really cannot express enough how thankful I am to be a small part of what God has already done for Olga, Peter and Kareen. But I don't think our job is done.
Olga needs us.
I don't want her to spend one more forsaken day in that place than she has to.

So I'm just asking- for one day- for you to do whatever you could to help Olga. Whether that's $10 or $20 or even a hundred...if you are able to help raise this money for the dossier, please do so HERE...
This is the link for the Family Sponsorship Page on Reece's Rainbow...every single dollar goes to the Abell's adoption fund, and every single dollar will help.

We're calling this A Day to Save Olga, because there are about 17 of us blogging mamas who have set aside this day to blog, post on Facebook, pray, give and spread the word to SAVE OLGA.  Lets bring her to her tomorrow.
Will you help us?

Thursday, February 17, 2011

Holding Pattern

Have you ever wondered where the phrase "we're in a holding pattern" comes from?  I know.  Back to my flying days.  A holding pattern is an oval pattern flown around a fixed point while you are waiting for further clearance, usually for landing.  With Reagan's heart that is where we are right now.  Holding.  Waiting to be told what we already know is going to happen.  Reagan is going to have surgery to close the hole in her heart.  Since recovering from her bout with RSV  she has finally managed to gain 3 ounces, but her cardiologist isn't very impressed.  Nor is her mommy when I consider the work that goes into that little gain.  Reagan is five months old today and still does not quite weigh 9 pounds.  We are now feeding her 20-22 ounces of fortified 24 calorie per ounce milk per day.  She fools everybody because she looks good.  But it is taking a LOT of calories and energy for her to pull it off.  Her heart has not changed in five months and we are coming to the conclusion that it is not likely to do so anytime soon, if ever.  Surgery now would ease the workload on her body and allow her to grow and develop more normally.  With the relatively small risks of surgery we feel it's the best way to go.  However at her appointment yesterday Dr. Kuhn changed his first statement of it being time to close the hole to giving her two more weeks to show a decent gain (after he realized she'd lost weight in the hospital).  He says we have some time because her pressures are still good.  Note the word still.  They will not stay good forever and it's better not to wait until her lungs are damaged.  So here we are. Holding.  Planning for surgery, but not completely sure it will happen.

Sunday, February 13, 2011


Today I took a break.  Rafael was off for his last day of vacation and we got the baby dedicated at church.  I have seen a good number of baby dedications over the years.  I've had both of my older girls dedicated there.  I have never seen such a moving dedication as was done for Reagan this morning.  Pastor Don as always talked about how the dedication is really more about us committing to raising our daughter(s) and our family and the church supporting us.  Then he talked about Reagan's heart.
 And he asked entire congregation to hold out their hands as if they were holding her.  And he prayed for her, and her heart.  And he thanked God for the gift of new life and for HER special life.  And through it all she held his hand and smiled.
 And I was reminded that she is not MY child; rather she is GOD'S child whom he has trusted to me.

After church we went with Grammy and Papa for a picnic and hike in Bogart Park and I nursed my baby without a thought of schedules or extra calories and we had some precious family time.

We played with "kitty tails" (Clarisse's version of cattails), and climbed the "mountain" and played in the playground.
 It was a truly wonderful day.  And then to top it off I got to talk to my best friend  and hear her fun story about getting engaged last night!  (Love you Jodi)

Friday, February 11, 2011

Normal is just a setting on the dryer

Normal...what's that?  I keep thinking that soon, soon, life will return to normal.  And I keep reminding myself that there is really no such thing.  Life doesn't come with rules or guarantees.  Life is constantly changing and waiting for normal just drives us crazy.  So I am trying to accept that normal doesn't exist and roll with the circumstances that I have been given on a day to day basis so as not to get resentful of the trials that (lets face it) have been coming fast and furious lately.  Grace and faith are my foundation right now, and the reason I am able to face each day (that and the fact that my husband finally has some time off work).  When I look at what we have actually faced in the last few weeks it is obvious that my own strength is not enough.  Failure to thrive.  Pumping. Bottle feeding.  Sick Cadence.  Sick Clarisse.  Sick husband.  Sick Reagan.  Hospital.  Sick Cadence again.  More weight loss. Cadence with an ear infection and burst eardrum.  Pumping not working well.   Oh yeah and Reagan is technically in Mild Congestive Heart Failure so I'm on pins and needles wondering what is going to happen with that.
I keep wondering when I'm going to catch a break.  It seems like just when I start to get into a routine of  pumping, feeding, medicating something changes and interrupts it, and it is so easy to start feeling resentful of the circumstances.  So I'm owning the promise that God is with us through ALL of this and that I am growing stronger through it.
 I can feel his purpose even when I can't see exactly what it is or where we're going.  And then I read about the amazing things he is doing in the lives of others I care about like Susanna's family getting ready to adopt.  And how a little boy named Peter has gone from hopeless to a family in a week and is very close to a full grant (its not to late to help and maybe win too) to come home!  If God can (does) work these miracles then I think I can't trust him with my trials too.  Though I sure wouldn't complain about a few days without drama :)

Wednesday, February 2, 2011


Yay!  We're going home!  I am so tired of this room in isolation.  I want to take my baby out of her for a walk or something.  My heart breaks for little ones who are stuck in iso for weeks and months!  Reagan is better and stable and her discharge paperwork is done.  My big girls are coming for a picnic while we wait for the nebulizer to arrive and then we are outta here.  Home!  To be with my girls and my husband again!  This has been an interesting experience though, and a good training session if we have to face surgery down the hall in a couple of months.  If I can remember anything after I get some sleep I have a few good stories to share.  In the meantime bye bye hospital and here's a picture of Reagan without wires and monitors :)
P.S. Reagan is going home to her loving family.  These little ones still need to find theirs.  Amazing things are happening!

Tuesday, February 1, 2011

One more night

First off we will be staying one more night.  Reagan seems to be improving, but her chest is still retracting a lot with her breathing and she is responding well to the breathing treatments so they are keeping her here to continue with that and will see how she is in the morning.  She is looking a lot perkier than last night though.  My poor sweetie has never looked so tired and miserable!  More good news- the new cardiologist that we the BEST here according to our nurse friend :)  And he just happened to have an available appointment last Monday with two days notice.  Coincidence?  More more good news- Reagan's CCS approval has gone through so her cardiology and very likely this admission will be covered.  Reagan (and me -grin-) has had a stream of wonderful visitors today!  Thank you all for your company and advise!  Grammy came to spend the day with us.
 Our friend who used to be the Child Life Specialist here came and brought lunch and snacks and lots of advise on how to advocate for Reagan (she has more experience in this than anyone should ever have to have).
Another friend came and showed us great pictures of Reagan's cute little buddy and helped her out with a little OMT :)  And her daddy's cousin...yet another doctor came by to see us and make sure the night shift was up to the task ;)
And last but not least, the most important news of all.  I must link over to Patti's blog because wonderful things are happening there.  Three little sweeties are going to be rescued and the timing on this little fundraising giveaway is unbelievable!  NOT a coincidence :)

Holding her own

Classic Reagan is making everybody fall in love with her charm and spunk :)  She held her own through the night.  No oxygen has been needed, she is maintaining oxygen levels above 92 all by herself.  She fights like crazy against the suctioning, but it helping a lot.  We are very happy with her nurses.  The night shift nurse and the day shift nurse both ordered me breakfast so I have been well fed, and they are continuing to let me nurse her so this is wonderful.  If she continues to hold steady through the day they will likely release her this evening!


Reagan showing spunk with her right hand trying to get that mask out of her face.

My poor sweetie has been admitted to Loma Linda Children's Hospital for RSV and either pneumonia or partially collapsed lungs.  It has been an incredibly harrowing day, but she is resting comfortably right now.  I'm counting our blessings.  We switched cardiology care to Loma Linda one week ago today and because of that she has been admitted to the Cardiac unit.  VERY good thing!  Once we got past triage in the ER (that took way too long considering her pediatrician called ahead) her nurses have all been truly wonderful.  They felt so bad that they couldn't get an iv started easily.  Poor baby got poked so many times,  they eventually placed it in her head, but it doesn't bother her.  She has had three breathing treatments which haven't done much for her, but they also deep suctioned her which she HATED, however it has helped and she is the best she's been in a few days.  As of right now they are letting me nurse her so that is a good thing especially since it took her so long to get a room that I hadn't had much chance to pump.  I am going to attempt some rest before they come in to check her and suction her (sob) again, but I will continue to update as I get any new information.
Grammy singing Reagan to sleep after a traumatic iv placement.