Tuesday, September 4, 2012

Getting With the Program

Last week we had our first appointment at the new hospital.  Special thanks to our emergency last minute babysitter who met us at the hospital after a midnight text from me.  Because I have the bestest friends in the whole wild world!

We met with a nurse and a doctor who explained the program we will be part of.

Um.  Amazing!

Let's just pretend they sat me down and hooked me up to a mind reading machine.  Then they custom designed a program around me.

That's pretty much how it felt.  I'm sure it's how it feels to every woman going through it.  Because that is really what it is.  Let's figure out exactly what kind of care and treatment a woman carrying a high risk baby would want and then provide exactly that!  What a novel concept!!

First of all they are a referral center only.  They only provide care for women with babies who have some kind of high risk diagnosis.  Which means they are entirely equipped to handle care of high risk babies.  They also have actual experience with Trisomy 13 babies.

They are experienced and therefore know exactly how to react.  They know how to speak to us without saying the wrong things or avoiding the subject.  They are kind and compassionate but at the same time they are able to share information without watering down the facts.

At one point my husband asked what the doctor's experience was with the babies they had delivered who had Trisomy 13.  How long they had lived.  Because as he said, it's one thing to look at a bunch of statistics. It's another to talk to someone with actual experience.  The doctor immediately responded, "Oh, you really don't want to ask that question."  Then he stopped himself.  "Of course what I mean is, you do need to ask that question.  It's just not the answer you would want to hear."  He said that in his experience they usually make it anywhere from an hour or two to a few days.  It is pretty much unheard of for them to leave the hospital.

This is something we knew.  But again, it's one thing to see the statistics and another to talk to someone with actual experience.

But he went on to say that nothing is impossible and that is why they have to be prepared for anything.  (Thank you, this is what I have been saying.)  They have to be equipped to meet the baby's needs whatever they might be.  If that means going home, however statistically unlikely that might be, they are prepared for that.  He said they recently had a baby born with such a severe diagnosis, statistically he had almost a 0% chance of survival, even for a few minutes.  He said that baby went home.  As of our conversation, on day 20, that baby was still living.  The fact is that each baby has to be treated individually.  He went on to say they treat the babies the exact same way they would treat an adult.  (Wait, like real people?!)

Now wait just a minute.  You aren't getting excited yet are you?  Because there is so much more!

For starters part of their program deals with helping our other children.  That's right.  They have a family life therapist who will meet with our children and engage in play therapy to help determine what they have picked up on so far.  Then they will help us work with them to prepare them.  (Mind readers!!!  Way to pick up on my biggest concern right there!)

Ok, now get this.  We will have a conference.  They will bring in all the doctors and nurses and therapists that will be involved in the whole process to sit down with us and lay everything out for us.  Basically he said we will hear their experiences and opinions.  He said we will be hearing lots of different ideas and opinions but he stressed that they are just the opinions of those doctors.  Options.  (Options?!  Is that not exactly what I have been asking for?!)  In the end it will be all our decisions that count.  They will abide by what we decide.  (What!!!!!????  Am I in some alternate dream reality.  Seriously this is all too good to be true.)

And the list just goes on.  They will take me on a tour of labor and delivery, and the NICU.  We will meet with the Neonatologist.  They will find out exactly what labor and delivery nurses will be scheduled when I give birth so I can meet them ahead of time.  So that everyone involved will be familiar.  (I know!)

Oh, and they want me to write up a birth plan.  With all the details about what I want and expect.  Yup, that's right THEY want ME to write up MY plan so they can make sure to abide by MY wishes.  (Insert gaping open mouthed emoticon of shock here...)  THEN they make copies of MY birth plan and pass them out to everyone involved and put a copy in my chart so that EVERYONE can be well informed of MY wishes.  Oh, what if I change my mind?  Well, then they go back and pick up all copies of my original birth plan and destroy them and pass out copies of my new plan.  What if I change my mind the day of / moment of?  No problem!  They will abide by my wishes.  They just want to be prepared so they can follow my wishes.  So that I can make the most of the time I have with my son.  ':-o <----yup that's the emoticon right there (adding the one raised eyebrow)...

They even gave me actual literature to take home and read.  Not just the half hearted offer and then the "oh well I don't have anything good to offer, you should probably just check the internet..."  3 books to read over. Gift of a Lifetime by Tammy Tate, The Journey of a Lifetime by Tammy Tate, and A Gift of Time: Continuing Your Pregnancy When Your Baby's Life is Expected to Be Brief by Amy Kuebelbeck and Deborah L. Davis, PH.D.
Gift of a Lifetime is a little booklet with some basic information and beautiful pictures of babies who had brief lives with their families.  The Journey of a Lifetime is a companion to Gift of a Lifetime and is more of a workbook with some helpful templates for things like preparing a birthplan and lists of keepsakes, songs, resources, etc.  A Gift of Time is a full sized book and is a guide for going through the process of a pregnancy and birth of a child with a short life expectancy.  It is filled with quotes from parents describing their experiences throughout.  It also contains a sample birth plan at the end and is filled with ideas and various approaches.  It does a good job of covering a wide variety of reactions and decisions to show that there is not just one right way to react and act.  When the nurse handed it to me she warned me that it could be a bit of a tearjerker but that it is packed with good information.  It's true that some parts are hard to read but it is easy to skim and skip about to find specific information.  I am reading it from the beginning but occasionally skip ahead to skim through a future chapter if I have specific questions about something covered later.

Can anyone say miracle?  Miracles actually.  Because every one of those doctors and nurses and therapists are miracles.  Can you imagine what it must take to do the work they do?  I mean work that makes a difference, there is no denying that.  But I can only imagine how hard it must be.  Because how much do they really get to see the difference they are making?  They get to be there to help mothers and fathers and children who are going through shock and grief.  They help them go through the process of preparing for and delivering babies who usually don't get to go home.  Or if they do they are looking forward to the difficult process of surgeries and procedures and other challenges.  These amazing men and women go back to work every day and witness that kind of pain and they continue on doing what some people would see as pointless.  People who would not see a difference if the end result is the same.  But there is a difference.  Because the process makes all the difference in the world.  And I only hope I can even begin to show them how grateful I am for the service they provide.

Special thanks to Cari and to everyone else who has been praying for us through this whole process.  I truly felt the presence of those prayers and and army of saints supporting me during that meeting.  Cari, St. Gianna and Blessed John Paul II were right there next to me.

While we were there we also scheduled the birth date.  One of the few advantages of having a c-section.  Our son will be born on October 22nd.