12.10.2011

Accentuate the Positive

"You've got to accentuate the positive
Eliminate the negative
Latch on to the affirmitive Don't mess with Mister In-Between"
These days, my goal is to follow the words of the fabulous and oh-so-handsome Bing Crosby.

True to my usual response to just about anything... I start out very emotional and overwhelmed, soon followed by work mode.  I like to attribute work mode to my parents who always emphasized the fact that when there's a problem... DO!

A week ago, I wasn't able to Google Hypoplastic Left Heart Syndrome, but this week I was able to start researching and looking into our baby's condition and what happens now.  Although I am still hesitant to dive into resources like support groups and talking to other parents of children with this defect, I am feeling ready to start planning for the year ahead of us.

I spent several days looking into our options after baby is born.  It has come to our attention that while this condition is rare, the surgery is very well-known and has been successfully practiced for many years.  Outside of Oregon, there are several facilities that specialize in children's heart transplants and heart surgery.  Also, there is a fairly new option of fetal intervention at the Boston Children's Hospital.  Both the heart transplant and fetal intervention options are very risky and are not recommended unless the Fontan Sequence is unsuccessful.  With the help of various contacts in the medical field and research of my own, we are feeling very confident in receiving treatment here in Oregon.  Not to mention the stress it would add on the baby and our family to travel and seek out of state care.  

We have been really lucky to have great neighbors- Bobby, Katie and their 18 month old Lucy.  Katie is a labor & delivery nurse AND her dad just happens to be an Obstetrician at the hospital we will need to deliver baby Armitage.  Katie talked to her dad about our case and he not only confirmed that Dr. King, our Pediatric Cardiologist is the best of the best- but that he would be more than happy to take over our care.  I was able to set up an appointment with him next week and we will go from there.  I was nervous about finding another OB that we could trust and here we have one just fall into our lap!  The best part?  My OHP plan is through Providence because my care was planned to be all through Providence providers and facilities.  Now that we are being transferred to Legacy Emmanuel, I was worried we wouldn't be covered.  BUT, both our new OB and Pediatric Cardiologist are networked with Providence insurance plans.  

Now for the very best news this week... we received 2 out of 3 results from the amniocentesis and our baby has all 23 pairs of chromosomes testing normal.  The last test is for DiGeorge Syndrome, an abnormality in the 22 chromosome.  Our genetic counselor Jeri told me that after seeing the other results, it would be very rare for the DiGeorge Syndrome to come out positive- but she will notify me as soon as they know, which should be within the next two weeks.

As for home life, Londyn hasn't been herself this last week.  She hasn't been sleeping well, won't eat much and the most alarming... doesn't want to participate in her dance classes.  She loves to talk dance class up, but when we get there- she just wants me to sit with her by the door in class.  I have a feeling that she is acting on the stress and chaos of what is going on, so we are just trying to stick to her normal routine.  I am making more of a point to give her lots of snuggles and special time with as much undivided attention as I can give.  Through all of this, she is the best distraction from worry and stress.  Christmas is an especially sweet experience this year.  She is all about Santa, Jingle Bells, snowmen, Christmas trees and decorated houses.  At night, we've been reading Christmas stories and when we talk about Mary & Joseph, she calls them "Mommy & Daddy"... and of course, baby Jesus is " baby brother, sister".

Tree Lighting & Parade in Old Town Sherwood

Dress Up Day @ Dance Class

We are anxiously awaiting Christmas morning, as an envelope labeled "Gender" sits on our mantle... just itching to be opened.  It will certainly be THE BEST Christmas gift of the year.  

3 comments:

SarahAnd said...

That is some great news! And Londyn and brother, sister are very lucky children to have such terrific parents. You guys are in our prayers!

SarahAnd said...

That is some great news! And Londyn and brother, sister are very lucky children to have such terrific parents. You guys are in our prayers!

Kelly(M&M) said...

Thanks for being so open with all of this. I am so happy for you for the good news. You have an amazing family and all your friends will be here for you. You are an inspiration of hope! I think you are awesome! I can't wait to hear if your sweet baby will be a boy or girl! We did the same thing for Christmas one time(although, Jeff didn't even know I had the ultrasound done- it wasn't scheduled until January!) and it was my favorite present!