Yup...so far that seems about right

Saw this one someone's FB profile and found myself nodding.  It sounds just about right so far.  Not sure where the plane will actually land, but working on still looking forward to the adventure!

What it's like to have a baby with a congenital problem: 

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. 

Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. 

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

News

The call finally came.  I was in the driveway of the beach house, rushing off to a lady's lunch with the Linda and Mother Hale, Olivia in tow and fussy in the back seat.  The car was literally on and I took the call with the window down and Michael standing right there.

"Good news!  No 22q!!"

I think that poor genetics counselor was as happy as we were!  A boulder was lifted off my shoulders immediately.  It was not the result I expected.  Not at all, but certainly the one we wanted.  Now we only had to focus on his heart and getting him healthy.  No scary genetics issue.  Music to my ears.

Suddenly -- and in the week that's followed since we heard -- things started feeling more manageable.  Sure, there are my moments when I can't sleep and sit on the bed for an hour bawling my eyes out from fear and concern.  But those moments aren't every day and, I'm guessing, are to be expected.

Two weeks to go until our next consult at the hospital.  For all the questions we have shared with the program team, they really haven't been forthcoming at all.  "That's something we'll cover on the 30th."  Seems that we'll cover everything on the 30th!  I remain in the dark on what life will look like for our family in the next year.  Will there be complications?  How long will he be in the ICU?  Will I be working?  Will Little Man be in daycare or at home with me?  How in the world will Olivia adjust and how will we feel like we're balancing the two of them fairly?

There's a lot to understand and so little out there on the internet.  I've found a couple Facebook groups that have been helpful and desperately combed existing blogs to read their posts about the months following similar surgeries.  But there seems to be so few out there who have truncus AND an older sibling AND both parents working AND blahblahblah.  I miss having people to "talk" to online, like I did while weathering the two IVFs.  We're sharing this diagnosis more publicly in a couple weeks, so hopefully folks will come out of the woodwork with "my cousin went through that" and "let me send you my neighbor's email."

In the mean time, I'm waiting (not so patiently) for our consult in 12 days (but who's counting?) and making the plans that I can make.  Yesterday I requested a case manager through Aetna and started the process of requesting statements of medical payments already made this tax year, anticipating the possibility of getting a deduction on our federal taxes.  My conversation with the Aetna person was encouraging yesterday, as she thinks that we will be 100% covered for the birth and surgery because we're already hitting our maximum out of pocket (thank you, oh Mr. IVF).  I guess, if you had the chance to plan it, having an IVF, a c-section, and open heart surgery all in one year is the way to go!  I'm not holding my breath until the new case manager confirms this, but it's a step in the right direction.

Otherwise, putting one foot in front of the other.  Watching my sugars and insulin, worrying a tad about weight gain (more this pregnancy than last), and trying to get the fun stuff done (O's big girl room).  There's lots of calls, doctor's appointments, bills, work balancing, and plain ole' tasks to get through...enough to keep anyone busy.  We can do it, but thank goodness for a flexible employer and weekends!

Onward and upward!

Disappointment

They told us repeatedly that we would have the results by the end of the day today.  They never came.

Moments before "close of business," I'm distracting Olivia on the Merry-go-round at Playland and see Michael bolt for a quiet place to talk on the phone.  A call had finally come in.  After repeated messages and conversations.  Each time we revolved around I tried my best to read his body language.  Nodding.  Slumped shoulders.  No expression.  The music just rang in my ears as I became convinced it was bad news.  I covered the ground between the horsies and him in seconds.

"No news." He went onto explain that the lab just didn't have the results.  We should never have been told (by three separate counselors) that we should expect results today.  "So sorry, but there's nothing more we know."  I was enraged.  How cruel, to drag us along in expectation and only offer a shred of information when results didn't come.  I cried a hard, ugly cry in the middle of the street behind a public bathroom, not caring who saw me or who wondered what would make me act like that.

I was angry at Michael.  For being so nice to the counselor.  For not demanding more information.  Essentially for not being me and doing what I would have done if I answered the phone.  In retrospect, I was too hard on him, but I felt betrayed.  I was hurting and he should have hollered at the person who hurt me, he should have argued until he got an answer.  There's no room for nice guy in medicine.  But it's the nice guy in him that I love, which makes my reaction unfair.

I called the counselor back while standing in the street.  Explained to her that this just wasn't good enough.  We deserved answers.  We had done everything they told us to do. They owed us the respect of a clear reason why.


Long walk home, streaked with tears and moved forward with completely numbed legs.  All I could think about was why were we being punished?  Why does it have to be worse?  Isn't it bad enough that he's sick?  Why do we need to go through this to learn if he's really, really sick?  Tired, beaten anger followed me home and fueled a small handful of further conversations with counselors.  Self righteous tears streamed down my face as I negotiated with a counselor to actually call someone in the lab -- a person, a real human being -- and find out if the test had been run and when.  I was done with hearing about the guidelines and wanted to know what the hell was happening.

Turns out we weren't going to get a result today after all.  The first slide on which they performed the FISH microarray test yielded results, but not enough to reach the threshold of that would lead to a conclusive "result."  No mention of if they saw deletions or not...I had no energy to ask.  They had to run another slide through the same process.  "The lab is hopeful to have an answer in 3 more days."

And this was the first moment I truly felt defeated.  I bargained with myself all week.  Just make it through the weekend.  Make it to day 7 and you can finally know.  Keep your chin up, be sociable when friends visit, find other topics to talk about, pretend that this isn't on your mind constantly...just get through.  And then you'll know.

Or not.

I'm afraid.  I'm fearful of how this might change his life.  How it would change all of our lives.  And yet I can't go there yet, not until I know whether he is 22q.  I can't grieve the loss of a chromosomally "normal" child unless I know that child was never meant to be.  I just simply don't have the energy.  All of our trials during this pregnancy have taken their toll.  A hard IVF.  A slow beta.  A grossly enlarged yolk sac.  Waiting for impending miscarriage every week.  Waiting to have a CVS.  Waiting for the results.  Abnormalities on the anatomy scan.  And that dreaded day I sat in the conference room with three kind people who told me my life was going to be remarkably different than I ever thought.

And now we wait again.  Three more days of vacation spent on the edge of an emotional knife.  Thank goodness for Olivia.  Without her, I doubt I would have held it together this long.  She helps her Mamma be a tough cookie.  And I love her so.

Coming up for air

Our world has completely changed.  I didn't expect it to change and it has taken me days to even begin to think clearly about it all.  On Monday, we learned there was a problem with the shape of vessels leading away from Little Man's heart.  On Tuesday, I was in to get a fetal echo at CHOP, waiting quietly and patiently while the tech took an hour of images.  She left the room and returned to explain that I would meet with a doctor, nurse, and social worker.  My heart sank.  Alone, I sat around a table in a small conference room and learned that our son has a very rare congenital heart defect (truncus arteriosus) that has left only one artery where there should be two.  Open heart surgery will be performed right after birth.  There's no option - he needs it to live.  And he will need more for the rest of his life.

And the bad news continued.  "22q11.2 deletion" is a possibility - accompanies this heart defect in 30% of the cases.  The syndrome was considerably more frightening than the prospect of open heart surgery.  Learning disabilities, facial deformities, serious mental illness, problems feeding, spine problems...these are only a few.  A new test will be run. You should know within weeks if he has this.

Digest.  Shift into pragmatic mode.  Ask about prognosis.  Ask about mortality rates.  Ask about chances and risks and percentages.  Try my best to remember it all so I can call my husband -- my dear husband who is patiently wading through meetings, checking his cell every moment -- to tell him that his son is sick, very sick.

I'll write one day about the details, but for now I am making my way through this week following.  Holiday with my Dad.  Beach time with my family.  Sharing a weekend with friends.  It all should be happy, but I struggle to sleep and steal moments in corners to cry.  I lay staring at the wall in the dead of night wondering about affording hospital bills and having less (time, money, energy) for Olivia.  We are resolved about the heart condition -- convinced we can make it through and create a good life for our son and our family.  We are terrified of 22q and a lifetime of unknowns, of waiting for yet another shoe to drop and disrupt his happiness and peace.

Thursday came and went without a call.  Friday came and went without a call.  Monday feels miles away, but we've been promised results by then.  I find myself wishing away these days and dreading hearing the cell ring.  I'm sick with worry and consumed by concern for...everything.  I doubt I will ever forget these handful of days while our family dangles in limbo.

Home sick...again

Currently home sick with little O. This year she has had chicken pox, hand fot and mouth, 7 ear infections, and (now) croup in the summer. Is the rumor true that this is all money in the immune system bank? I sure hope so!

17 Weeks

It's been a busy week with this little man!  Had second visit with the nutritionist to help me manage my sugars, a check up with the perinatologist to get med review, and regular OB appointment.  Whew!  The nutritionist was, as always, only minimally helpful and really just about getting through the mandated steps to get the GDM covered.  She was a nice person, but offered only one piece of helpful info -- a list of good snacks that I can use to help plan my days.  So far, I haven't had the time to review it, but I will for ideas to shake up my ritual of living off of Luna protein bars when I tank at the office.

Perinatologist was a great visit.  The little man is doing wonderfully and measuring right on track.  Over 6 oz now and 5 inches from the top of his head to rump.  Hard to believe he's so big already.  They couldn't see much by way of diagnostic on this scan, but we'll know a lot more at the anatomy scan on July 2nd.  MomMom is going to that one.  My little present to her.  She's so excited.  The doc started me back on insulin again -- 10 u of NPH in the evening and no more metformin.  So far, it's kind of controlling my fasting, but my 2+ readings are through the roof.  This will take a little time to dial in.

OB was a good visit yesterday.  I'm still having miserable headaches, but he has nothing else to offer that will help beyond the firocet.  At least that helps.  Baby's heartbeat was easy to find, moving up in my belly, and nice and strong.  I love hearing it.  Next visit not for another 4-weeks...excellent!  Hopefully we'll spread some of these appointments out while we can.  The third trimester is going to be a cluster of visits that I'm already not looking forward to. 

I'm starting to feel nesty.  And by nesty, I mean completely panicked that our house is out of order and not ready for another child.  Because it isn't!  Michael is going to start work on the big girl room, but the project is a huge one and I doubt it will go as quickly as he predicts.  The basement is a wreck and we kind of need some order down there so I can find things like hand-me-downs, toys, and Christmas decorations.  And I have not prepared a single thing for the new baby because I don't have anyplace to put it.  I need that back room to be done soon!  Sigh.

Yesterday, Olivia learned -- no, embraced -- the word NO. 

It came out of nowhere and now it litters every interaction.  No means no.  No means yes.  No means I have no idea how to say what I really mean so no.

She wants to talk.  She desperately wants to talk, babbling phrases and inflections all day long.  Even her teachers noticed a change this week.  She's trying so hard.  So I guess this is frustration gap filler until those neurons line up and we can understand what comes out of her mouth.  Oy.

In other news, my headache marathon continues.  I wake with it, drag through the day with it, and lay down at night with it.  The OB didn't mind filling the Fiorocet prescription to help kick it, but I haven't had a moment to go pick up the script.  Until then, I squint in pain at the monitor and wonder how much longer until I can take another Tylenol.  I forgot how lousy this was last time!