Sorry, this one is going to be long too…

So, on Wed (3/23/11) Josh had to take the whole afternoon off from work so that we could go to a bunch of appointments.  First we met with the perinatologist (or pregnancy specialist).  My cervix “looked fine” but they didn’t tell me more than that.  My amniotic levels are now up to 38cm and I am insanely uncomfortable.  They didn’t measure my belly so I don’t know how many weeks I’m measuring at, but I’m gonna go ahead and call it “waaaay to many weeks” (lol).  The Dr. said I could still try for a natural birth but I realized today I forgot to ask a couple of other questions.  The Dr. was kind of acting like he was in a big hurry and we were in his way…which was odd because last time, we couldn’t get him to shut up and he acted like he has all day long to repeat himself over and over (lol).

The geneticist came to the appointment with a bunch of information for us.  A folder with pamphlets, and book and a VHS….yes, that’s right a VHS.  The funny thing is the book says over and over, “Make SURE you get the LATEST information”.  The book is from 1995! But it’s still a good starter place.

I was afraid of the appointment because I was afraid that everyone would be making sad eyes at us and asking us how we are doing.  I was nervous that they wouldn’t believe me when I told them how good we are doing actually because they don’t really know us.  But fortunately everyone was really lighthearted and laughing the whole time!  (For a minute I thought, “I wonder if others would find this incredibly insensitive of everyone!”  But it was exactly what I wanted.)

The exam room at this place is odd.  You lay in this weird chair in the very center of the room.  The sonographer sits on your right to do the ultrasound and there are three chairs lined up against the wall on the opposite side of you for family members. The nurse sits at a computer behind your head and I don’t have any idea what she is doing but she’s always there to book my next appointment afterwards.  The wall past your feet resembles a kitchen.  It has a counter and cupboards and under cabinet lighting, but it’s covered with pictures of twins, triplets and very pregnant past clients like myself.  The geneticist leans up against the counter while the Dr. and student resident hover around the cramped room or squeeze just inside the door.

The Dr. really spent as little time with us as possible and didn’t say if he thought I’d be going much further or anything like that.  He did say I should try to not take the Procardia if I can.  Since my contractions start at the same time every night, and they don’t seem to be changing anything, we might as well let my body do it’s own natural rhythm.  Of course I had already stopped taking it unless absolutely necessary so that’s not really anything new either.

I tried to ask him about this severe stabbing constant pain in my upper belly and he was like, “Yep, your belly is really big, your muscles are stretching,” (the other night the pain was so bad I considered going to L&D and begging them to drain some fluid for a minute).  I am pretty sure my stomach muscles are tearing and will never recover.  I tried to ask him about the pain on my lower left side.  It feels like round ligament pain but it’s almost constant.  And he was like “Yep, your belly is really big.” Oh, ok, thanks…

Then they gave us one picture of a 3D ultrasound of the baby’s face.  I can’t explain why but seeing his face made an almost uncontrollable lump in my throat begin to grow.  I was ready for the appointment to be over.  I needed to be alone.  As soon as the appointment was over I took a minute in the bathroom to cry.   Then I pulled myself together (barely) enough to ride the elevator down to the main entrance of the building.

Josh and I walked from the Perinatologists office in the Kaiser building across the street to the hospital for our scheduled tour of the NICU and L&D.  It was such a gorgeous day with the sent of Spring in the air, the warm Sun and the cool breeze and I uncontrollably sobbed for the whole walk.  I had to stop in the parking lot and pull myself together before we could go into the hospital.  Josh was so amazing at being there and being exactly what I needed.  I hope I’ve been able to do the same for him along this journey.

Baby #2 3D ultrasound of his face from 3/23/11

Then we went into the NICU at the hospital and met with Dr. C who works there.  She sat us down and talked about all the possible outcomes.  Even though his heart looked good on the ultra sound, they will do an EKG and other tests to confirm the duodenal atresia.  He will need IV nutrients at first and eventually a feeding tube as he recovers.  He may need a tube to keep his belly from becoming distended.  He may also need breathing help which can be anything from a nasal cannula to a ventilator.  He may need them all the time or just as he sleeps.  It was a long list of “maybe’s”.

The earlier he’s born the more likely he’ll need help breathing but the Dr. said that even if we make it to full term, he may still need help breathing because babies with Down syndrome tend to have weaker muscle mass and tend to need help with that at first.  She also said that because of the massive amount of fluid I have she’s concerned there is also an upper esophagus blockage.  It will be one of the many things checked at birth but he may also need surgery for that.  I think lots of other things were said but at the moments that is all I remember.

She kept asking me for questions but I couldn’t think of many because it was all so new.  I did ask if I would be able to hold him after birth or if he would be taken straight into surgery.  This question couldn’t escape my lips without tears accompanying it.  She said, depending on a lot of things, I may be able to hold him or at least see him but the nurses may need to take him away for things that need to be done.  She said he won’t be rushed into surgery, that will happen probably after the first day.  I asked about people coming to see him and she said, “If people want to come wait for a chance to see him they can, if you want, but there is really no guarantee when, or if that will happen in the beginning, so I’d tell them to wait”.

She took us on a tour of the NICU and introduced us to all the machines.  She showed us where he’ll be recovering and where I’ll be trying to get him to nurse on a set schedule for anywhere from two weeks to months.  Again it depends on a lot of things like his recovery from surgery but also babies with Down’s syndrome can have a problem with tongue thrusting and so feeding can be very difficult to get right.  She said as soon as I go into labor they will try to book us one of the guest rooms upstairs in the hospital that is set aside for families with babies in the NICU but there is no guarantee we will be able to get one.  We may be driving back and forth a lot or getting a hotel downtown for a while.  Again, we just have to wait and see.

I know this sounds like a lot of doom and gloom but I think Dr.’s believe it is their responsibility to prepare you for the worst.  I tend to not dwell too much on the many things that “could” happen.  I’m really focused on the now.  I’m glad I’ve been told as much as possible so that I can be aware of all of the possibilities, but I feel ready to take things as they come.  One thing at a time right?  And with the help of Josh, my Mom, Dad, and family, my friends like Pro and other friends (new and old) who have been amazing already, and, of course God I know we will be ok.  Some days will be harder than others.  That is already the case.  But many hands make difficult days lighter and many smiles make brighter days last longer.

We toured L&D and the nurses we met were great!  I hope at least some of them are on duty when I’m there but I think the nurses there in general are probably great so I was relieved to see that.

It was a long and exhausting day and it took me almost a week to blog about because there was so much to process!  Today is about resting and reading and learning as much as I can now.

Thank you guys again so much for following us on this journey and for the overwhelming outpouring of love and support!


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9 Responses to Preparation

  1. Phyllis Koenig says:

    What a journey you and Josh are on. Praying for you!

  2. Mom says:

    I’m glad to see you write this post, because it means you’ve been able to process most of this info, at least. That was a tough day!

  3. Andrea Oakley says:

    Thank you for sharing your day with us. *hug*

  4. Carrie says:

    Thanks for sharing your heart with us. Your son has an adorable little angel face and resembles Jaden.

    Hugs to you and Josh.

  5. Christne says:

    What a journey! Thanks for sharing. We love you

  6. Adrienne says:

    Hi! Just wanted to welcome you to this journey! I know it’s all kind of overwhelming right now but things will settle and when they do you’ll be amazed at how much love you have for your little boy. He will bring you so much joy! My son is almost 2 and I clearly remember posting on the baby center DS boards and being anxious, scared, no knowing what to expect. I too started blogging while pregnant with him and it really helped. I “met” a lot of other families with little one that had Down syndrome. Feel free to visit us at

  7. Adrienne says:

    Hi! Just wanted to welcome you to this journey! I know it’s all kind of overwhelming right now but things will settle and when they do you’ll be amazed at how much love you have for your little boy. He will bring you so much joy! My son is almost 2 and I clearly remember posting on the baby center DS boards and being anxious, scared, no knowing what to expect. I too started blogging while pregnant with him and it really helped. I “met” a lot of other families with little ones that had Down syndrome. Best wishes to you!

  8. Sandie Higley says:

    Amanda, thank you so much for keeping us in the loop…praying for you! What a sweet, angelic face he has!

  9. Erica says:

    Thank you for taking us on your journey-you & Josh are brave & so full of love & hope-you have to know you WILL make it through this & you WILL be ok. Your son is just beautiful!

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