adoption loss, please pray for my friends

My dear friend Alison has spent the last months preparing her heart, her family and her home to adopt a beautiful little girl diagnosed with Spina Bifida in an adoption story that God perfectly orchestrated. 

They spent the past week welcoming Seraphia Caritas and being by her side through surgery, recovery.  They brought her home, introduced her to the boys. 

And then, the birth mother changed her mind. 

My heart is breaking for them. 

Please keep the O family in your prayers.

diagnosed

Today my son was clinically diagnosed with Williams Syndrome.

A few weeks ago my brother, a medical student, mentioned that Augie had textbook characteristics.  I looked it up and was surprised.  Not only by the facial features, but the personality traits.  Primarily speech delays and super friendly, even to strangers.

From early on there have been things going on.  A mother's instinct, you could say.  The first month he was in our care we were at his Pediatrician four separate times.  Dx: bronchiolitis and pre-asthmatic.  He had these mini, mild (never-quite-diagnosed-as) seizures. Even today, I am not sure they were seizures...possibly temperature sensitivity (he wakes up cold and it takes him longer than usual to warm up, he is usually shivering during this time).  His forehead also had an unusual attraction to concrete.

If you look closely at this picture, it has been Photoshopped...along with many others, to attempt to conceal the bruisey head in otherwise cute pictures.  

We first met with a pediatric neurologist around his first birthday.  One tight heel cord led to two MRIs which led to two diagnoses: 1. Possible Tethered Cord (this is a mild form of Spina Bifida....I think this was a 'CYA' dx on the part of the radiologist, I don't think he has this, but it will be monitored over time).  2. Chiari 1 Malformation (an incidental finding that we are blessed to know in the event of future problems). 

Oh yeah...and as I mentioned before, speech delays.  He was in weekly OT from 6-18 months old at which point he qualified out.

So, in a nutshell, we have been hot on the trail of whatever THIS was for a while now.  The conversation with my brother was not a shocker.  It will take about two weeks for a confirmation by way of the genetic test.  But, as soon as we stepped into the geneticist's office, he was throwing out all these words and quickly confirmed the clinical diagnosis.

So, tonight, I read.  I research.  And the reality starts to sink in.

In my reading words like "mental retardation" and "adult day homes" stand out.  As do "shorter life expectancy" and "lack of social boundaries".  I am encouraged that he is highly functioning.  As a whole, he is doing so well.  He is a beautiful, amazing, sweet little boy.  He is my heart.  Tonight my heart hurts a little as I attempt to process what this means for his future.  He has a 50% chance of passing this on to his children (though many WS adults don't have the ability for lasting relationships).  That is one of a long list of what may lay ahead for an adult with WS.

So many random things are running through my head.
- I am grateful for the show Parenthood and processing the idea of life with a a special needs child.
- God intended us to be parents to special needs kids, before we even met Catie.
- I am glad I enrolled Rosie in pre-K to have some time to focus on the needs (and OT appointments) for the babies this upcoming year.
- I am grateful for a Catholic special needs school very near by, and that adoption subsidies would likely cover any cost involved.   

I am sad.  I want to cry.  This will impact our future...and certainly, obviously his.  I know there is undiscovered joy and greater meaning that will be revealed over time.  For now...we are processing.

a lesson in feeding tubes

Tomorrow 'Catie' will be having surgery at 7.30am to close her feeding tube opening.  Surgery is rarely necessary...but she needs it.  Pray for her!


On the occasion of officially being done with the tubes (wahoo!) I thought I would take a moment to educate others on what exactly we dealt with (she dealt with) in the tube department.

Catie was in NICU for the first four months of her life.  I am not certain when exactly the feeding tube was placed, but I believe it was closer to the end of her stay.  Due to her drug addiction she was not feeding well and subsequently classified as failure to thrive. 

When I first met Catie, she had a GJ Tube.  It was a long tube, dangling from her body that had three ports.  One for the balloon (which is blown up inside her stomach to keep the tube in place), one for her G (gastric or stomach) port and one for the J (Jejunum) port.  No one is quite sure why the doctors felt Catie needed the additional J port, rather than just a stomach port, but the assumption is that babies are less likely to deal with reflux from medications when they are sent down the J port.  Catie and her WONDERFUL first foster mom worked hard together to wean from tube feeding to where she was taking in enough calories by mouth. 

What her GJ Tube looked like from the outside

It was surgically inserted into her Stomach and Jejunum

We did pretty well with the JG tube.  We normally dressed her in a onesie so she or our other kids could not pull it.  By the time she entered our care, she was eating exclusively by mouth and no longer receiving any meds.  Our responsibilities included daily care of the tube (flushing it with tap water) and care of her stoma (cleaning her opening as it was quite leaky and irritated).  So, despite the non use of the tube, doctors wanted to keep it in until fears of her weight gain issues had passed.  The JG tube remained in...until the wonderful day when she was not wearing a onesie and I picked her up out of the exersaucer.  Suddenly I was soaked.  I thought she had a messy diaper and I looked down and 'aaaagggghhhhh'.  I had pulled out her tube.  A trip to our local ER and they placed a temporary catheter to hold the stoma open.  A week later and a trip to the children's hospital further away, and Catie was downgraded to MicKey G tube.  If she needed to have the J portion reinserted, it would have had to be done surgically by scope.  Fortunately, the Mic Key tube insertion was a quick process in the doctors office.  I learned how to insert it, in the event it was pulled out. 

The Mic Key tube was SO much nicer.  So, as before, responsibilities were flushing the tube, cleaning the stoma. checking the balloon fluid level and on occasion, removing the tube to check for leaks or replacing it. 

Catie had the Mic Key tube up until December, when I begged her doctor to get rid of it altogether.  There is no way in haities I was going to mess up her progress and put food in that thing.  No set backs here buddy!  Her weight gain was still slow, but consistent with her growth, so he agreed.  Removal was simple.  I got home that night and took it out.  I put a gauze on top and put her to bed.  Instructions were if it had not closed in 48 hours I may have to come back and get a stitch. 

Well...something got lost in doctor lingo.  After three days I discovered a small leak.  For the last several weeks I have lovingly referred to her site as her blow hole.  I have had to keep it covered and tomorrow it will finally be surgically closed.  Not quite 'just a stitch' but a simple procedure supposedly.

So...hopefully you have enjoyed your brief lesson on feeding tubes.  As I have never fed through a feeding tube, I can't be of too much help.  We have some fancy equipment in our garage and I have learned words such as bolus, that never really applied to us.  BUT, if you ever encounter a child with a tube, Be Not Afraid! 

adoption opportunity

I was just asked if I know anyone that wants to adopt a little girl.

She is special needs and uber adorable.

One year old, down syndrome, maternal drug addiction, feeding tube; Hispanic.    Doing well, LOVES to interact and talk.  Paternal rights terminated.  In need of a good, loving, permanent home.  Please email me for more information.