A Quick Run Down of Friday’s Treatment

11

April 17, 2011

I’m trying to keep this one quick so my wording is a bit brief (for me).

On Friday I went in to be drained for the second time.  At the appointment they told me it would be safer to do it in Labor and Delivery since every time you do this it raises the risks.  They are still small risks but they still go up each time.  The Dr. (again someone I was meeting for the first time, but she was very nice) left the decision up to me but as soon as she said “small chance” any of theses risks could happen, I decided to go to L & D.  Literally every single thing they have told me I had a “small chance” of happening this pregnancy, has happened so….

Again we had to go through them not being able to find everything they needed to do the procedure for a long time and the nurses telling me it was because they “so very rarely do this procedure”.  And it’s such a rare procedure that everyone wanted to watch.  I think we ended up with me, my mom, the Dr., two nurses, two residents and one or two students in the room.  Everyone wanted to watch this “rare” procedure.

I was actually a lot more nervous this time.  I knew it was going to hurt a bit but the longer they took to set up and the more precautions they put in place the more nervous I got.  As they started poking me I asked Mom to pray for the baby because by that point I was genuinely terrified.  The Dr. told me though that after the first poke the needle is removed and only the tubing is left so even if the baby bumps it he’s ok, it’s just a plastic tube.  And he did bump it, a lot.  He was super active the whole time.

They were able to drain 3 liters this time but they were going for 4.

They then had me and the baby monitored for about 45 min afterwards.  Before they couldn’t even get his heartbeat on the monitor because there was so much fluid even though we could all see him being VERY active on the ultra sound (during which there was this one magic moment where he looked right at us and he looked so much like Jayden!  Then the nurse said “Hi bubba”-her nickname for stubborn babies she can’t get on the monitor-and he waved!  It was so cute!).  Afterwards, they were able to hear it easily and we got to watch my spastic stomach cramps and contractions on the monitor.

I’m not sure why but I was in a LOT of pain for a while afterwards.  Everything on my right side hurt very very badly from my upper back to my hip joints to stomach, everything.  I think my body just did this freak out adjustment period thing.

I slept a lot yesterday and threw up all morning today, then slept most of today.  I think tomorrow I’ll actually be able to enjoy the fact that I have so much relief from the pressure but the thing that sucks the most right now is that I am almost certain I tore a muscle in my belly before we drained it the first time.  I have to actually hold that spot in with my fingers to walk and the longer I stand the more excruciating it becomes.  So I’m still kind of bed ridden but I’m choosing to be grateful for the good things like being able to roll over in bed, breath deep enough to actually take my asthma medicine, or (the one that’s most important to me) have Jayden sit on my lap for a bit so I can read him a book and hold him close.

They’re still saying it will probably be a weekly thing but I’m hoping to hold out for two weeks.  I’ll probably stop writing about every time but I’ll post short updates on my Facebook.  I’m hoping this week I’ll have the energy to do a post about our meeting with the Dr. who may do the baby’s surgery (that happened last week) and a post about the name we are thinking we will use and why.

I started this blog to share what I learn about Down syndrome and how I learn it, but so far that hasn’t been what it’s been about.  I have really not been doing too much research on the Down syndrome right now.  I have the rest of my life to learn day by day about that and for now the focus is the pregnancy and preparing for the NICU stuff right after birth.  Everything else will come in its time.  Josh read somewhere that something to keep in mind is even with the Down syndrome a baby is still just a baby and really our main concern at first will be having two kids under two years old.

Thank you all again for your thoughts and prayers.  I truly believe the successes we’ve had so far (like getting to 35 weeks today! yay!) have been because we have such amazing support from you guys!  I hope you know how much we love and appreciate  you all. <3

Categories: Discoveries.

Relief!

12

April 9, 2011

 

So today was another check-up with the perinatologist.

I bumped into our usual nurse in the elevator and she asked, “How are you?”, in the way people do when the answer is supposed to be, “Good” or “Fine”.  But I said, “I’m MISERABLE!”, with maybe a bit of a smile, but definitely in all seriousness.  She looked shocked so I said, “I’m just being honest.”, and laughed.

I met ANOTHER new Dr. today.  I really have the worst luck with that, but I really liked this guy.  Everyone who saw my belly said “Oh my god!”, and everyone who touched it said, “Oh man you are as hard as a rock!”, and the nurse (who I adore) said, “You know who you look like? Octomom!” (hahahahahaha….sigh…yeah…I know…) (Also, I was gonna post pics here of Octomom at full term but the images grossed me out! lol Feel free to google them if you like, but I don’t think I look QUITE that bad…but close)

The Dr. said my cervix looks good and it doesn’t look like labor is imminent, but then again with this condition things can change quickly.  The baby is measuring perfectly in the 50% percentile which is good because babies with Down’s can measure a few weeks behind.  He is about 5lbs!  His heart rate was perfect and my blood pressure was perfect (which I always worry about since I had pre-eclampsia with Jayden).

We discussed how absolutely miserable I was physically.  I was having pain in my upper abdomen that felt like my muscles were literally tearing, severe round ligament pain, not sleeping because rolling over takes 10 min because it’s so painful, back pain and trouble breathing to name a FEW.  Thursday I think I cried almost all day just out of pure frustration from the never ending discomfort.

So we decided to drain some fluid.

They do it the same way amniocentesis is done but with a wider needle and they take much more than is needed for amnio tests.  They had me lay on my back, found the deepest pocket of fluid with an ultrasound, numbed my skin and inserted the needle into the peak of my belly.  Soon though I said, “I’m feeling a little nauseous (it was more than a little but I was trying to be tough).  Is that from the release of pressure?”  They told me to try rolling to my side to see if that helped but when I did the fluid stopped draining and we had only just started.  So I rolled back to my back and said “I can endure a little nausea for this” because I was so desperate for relief.  But very soon I realized I was covered in sweat, very nauseous, shaking and seeing little fireflies.  Again I tried to just be tough, breath through it and stay calm.

The nurse looked at me and said “You’re going to pass out.”  And I said, “No I think I’m just scared and freaking out a little and it’s making me hot” (Which would really be very unlike me, medical stuff doesn’t usually freak me out).  And she said, “No you just went pale, you need to roll over now!”, and pushed me over to my left side.

Apparently when you have that much pressure and you’re laying on your back, your organs can be crushed and blood flow to the brain stops!  Good to know!

They had to start over with me on my side and re-insert the needle in a new spot.  These spots can be very sore for a few days because they monitor the needle and the baby with an ultrasound and they wiggle the needle around to avoid him as he moves and to keep the flow going as steady as possible.  Every time they had to change the bottle the needle leaked and all in all it was a very messy processes.  I was really glad I had asked Josh to leave the room.  Even though I had wanted his hand to hold a few times, it was almost a bit much for me and I enjoy studying dead people soooooo…  I’m not sure anyone else not medically certified would have made it without passing out!

They were able to take more than 2 liters of fluid!  I didn’t understand why they had to stop at that (something to do with pressure and flow) but they said I still have over 5 liters left in there.  Normal amounts is 1 liter…. ONE!  And I had over SEVEN!  No wonder I was miserable! (Interesting note though-The Dr. said a liter weighs a bit over 2lbs so that plus the weight of the baby is actually a bit over the amount of weight I’ve gained! Since I asked how much it weighed, he later teased, me saying I should run out and weigh myself the moment the procedure was over. lol) (Also, Ok, So maybe I don’t think I look quite like Octomom but I have enough fluid to have SEVEN babies sooooooo….maybe I do?  One of these days I may get brave enough to post a pic we took of me from the side a couple of weeks ago but my face looks so miserable I can’t quite bring myself to do it)

They had me stay and lie down in another room and drink juice for a while.  I had to get the fireflies to go away, get some color back into my face and be able to walk straight.  The nurse said “I don’t want you to leave until you feel like a natural woman”. (lol)  I thought, “Well then I guess I’m here until I deliver because right now I just feel like a house”. (lol) The nurse later gave me a hug on the way out.  I thought that was so sweet.

They told me to take pictures of the 5 filled bottles of fluid for my scrapbook (these guys made me laugh a lot today which was so nice)!  I didn’t take a pic of that but I do have a pic of a toilet for you! (lol)  The normal floor this office is on is under-construction so they are sharing a space with the place people go for gastric bypass surgery consultations (which added to the whole mess of things with the procedure because they have only been in the new place for two days and they didn’t know where half of the stuff was that they needed at first-also the nurse said they very rarely do this-that was reassuring…).  The toilet seats and benches in the waiting room were all extra large.  Some even to the point where they made me feel small and that is QUITE the feat right now.  It made me grateful that this misery is so so so temporary and I prayed for the people in the office that day who were searching for relief too, just a different type.  But seriously, how awesome is this toilet?!

It looks like it's made from UFO parts!

I’m feeling soooo much better now!  I can BREATHE!!!  I’m pretty sore in the injection sites and I have to take it easy tomorrow because there are some risks with this process but I can’t explain how much better I feel.

The Dr. said I have to call on Monday and let them know if it feels like the fluid had returned already.  If so they’ll drain me again next week but if not they’ll wait two.  They intend on just repeat draining me until I reach full term.  It wasn’t a fun procedure but if I can make it to full term and NOT be begging God to put me in a coma, I’m happy.

I’m 34 weeks today which was the second milestone the Dr.’s were hoping for!  Now we aim for 37 weeks and he’ll be “officially” full term!!!

Categories: Discoveries.

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Preparation

9

March 28, 2011

 

 

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!

-Amanda

Categories: Discoveries.

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Hope in Many Forms

9

March 20, 2011

Our son Jayden at almost 15 months old 3/20/11

 

I cannot express the gratitude I have for the unbelievable outpouring of support we have received.  From families who have experienced similar things, to parents and siblings of children with disabilities, everyone has given wisdom, encouragement and advice.  I posted “My First Thoughts” on the birth forum I participate on (babycenter.com-Shout out: May 2011 is the BEST group EVER!! lol) and the amazing amount of support was just astounding!  People have contacted me on Facebook, called me, or stopped by to just pour love, support and encouragement on us.  I KNOW people are praying for us and I cannot believe the peace I feel.

I still cry sometimes.  It’s still hard for me to grasp that the term “mentally disabled” or “mentally challenged” would scribe my child.  But every time a thought like this slips into my mind, I cry if I need to and run to God with it.  He has, each and every time, shown me ways my son’s life will be beautiful.

Some people have encouraged us with Scripture.  Some have been “brutally honest” about how hard it will be sometimes but still encouraged me to endure and see the joys it will also bring.  Some have given specific advice about legal rights to brush up on, things to look for in a pediatrician, people to contact and talk to and organizations to join.  Strangers have told me that I have already inspired them and friends have pointed out my strengths and stated their faith in my ability to do this.  I cannot tell you how much those mean to me.

I wanted to address one comment though that I’ve received a few times.  I’ve had a few people say that they had a cousin of a friend or a friend of a friend or a distant relative who was told by the doctors that their child would have Down’s and their baby was born perfectly normal.  I have not, however been able to find out from anyone if they were told this after amniocentesis or blood work or an ultrasound.  And PLEASE know that I am not saying I don’t want to hear comments like this.  I do.  I welcome all the encouragements people have sent our way!!!

I could be remembering this wrong, but I believe what the geneticist told us was that the blood work you have done early in pregnancy only tells you what percent CHANCE you have of having a baby with Down’s and it’s only about 80% accurate.  So a 55% chance that is only accurate 80% of the time is not what I would consider reliable…or helpful even.

It also includes your age in the calculation which seems odd to me.  Many people (including many doctors I’ve seen) say that women over 40 have a higher chance of having a baby with Down’s.  But the average age of a Mother when she has a baby with Down’s is 26.  The idea that women over 40 have a higher risk comes from the fact that the percentage is higher in that category simply because less women over 40 have babies.  Not only that, but it’s really just a hypothesis at this point that the age of the egg contributes to the likely hood of an extra chromosome.

Ultrasounds are notoriously unreliable.  I can’t count the number of stories I’ve heard about people being told the wrong sex of the baby or the wrong weight based on an ultrasound.

But amniocentesis is 99.9% accurate.  Either the extra chromosome is there in the cells or it’s not.  There’s really no other way around it.  I’m not saying this to diminish hope or to say that people shouldn’t pray that a miraculous healing would be true for us.  But I would like to explain why I don’t think this is in the plan for us.

From the moment we found out our baby has Down’s God has been with me, encouraging me and answering my cries.  He has not been saying “I will heal your son”.  He has been saying, “Here is why I chose you to care for this very special life” and “Here is how I have already prepared you”.  God has been showing me things about myself, my husband, our first son Jayden, and both of our families that make us the PERFECT group for this amazing gift!

I wish I could share them all with you but He has been showering me with praise and encouragement for four days now.  It would take a while to type!

Another reason I feel at peace is that God had already told me he has a plan for this guy.

Around 20 weeks gestation, when we found out it was a boy, I was actually mad.  I was mad that I was pregnant again before I even knew if, or when, I would have another child.  I was now even more mad because I really wanted a girl and I kind of thought I deserved, “for once”, to get what I wanted, especially after the very rough year I had been having.  I told God I knew I was acting like a spoiled brat, stomping and shaking my head, but I couldn’t let go of how badly I had wanted a girl.  God told me “This is not about YOU!  This boy’s life has a plan.  I have brought him here, to you, at this time, so that he will be where and when I want him, to do the things I have planned for him and to impact the lives I will bring his way”.  How funny that I found that comforting, but I did.  Sometimes God tells me to just suck it up and trust Him lol.

So when I was told my son would have Down syndrome, I was sad and shocked but already knew, I mean KNEW, that God had planned this, expected it, and even prepared me for it.

Now, it’s possible I could be wrong (it’s happened once or twice lol) about whether or not God will heal my son’s Down syndrome.  There is really no way anyone can predict the future or what God has in store for any of us.  And if God has put on your heart for you to pray for a miraculous healing then you should, PLEASE, continue to do that.

But for now, I am finding hope and comfort at every turn and I am really, genuinely excited to meet this little man and watch God’s plan for him unfold.

And just so today’s post has some pictures, I will share the pictures I got of my son and husband at the park today!  It was windy and Jayden (and I) dislike the wind very much so he’s making funny faces in a few of them lol.

 

I LOVE his eyelashes in this one!

 

 

Guess what Jayden sees? A GIRL!!! lol

Sprinkling rocks

 

"Hold on Dad, I got this step" lol

 

Just like Mommy! Dislikes tunnels and wind!

Categories: Discoveries.

My first thoughts

3

March 18, 2011

 

 

This was the note I posted on my Facebook and in my birth group forum:

So the genetisist called today and our son has Down syndrome.  I don’t even know enough about it to know what that really means yet.  The test is 99.9% accurate so there is little room for doubt.

I had Josh come home early from work so that I could tell him in person.  We have shared the news with our immediate families and everyone has shed some tears as the news is still a shock no matter what the warning signs were.

Our Dr. recommended the Mile High Down Syndrome Association so we have been doing some reading there.

I’m feeling a lot of things right now.  But I’ll tell you the good things I believe.  Josh and I have recently been through some very hard things that not only brought us closer together than we have been in years but also brought us closer to God.  When I found out I was pregnant I actually said to Josh, “Do you think God allowed us to go through that because he knew we needed to be together and with him because there is going to be something wrong with the baby?”  Josh said “nah” but I think that may have been the Holy Spirit warning me.

I truly believe that God has a plan for both of my sons lives and that He has prepared me with what I will need to do this.

I believe God is with me.

I believe that I am a strong woman and that perhaps, we were chosen to raise this very special life because of our strengths.

I still believe in miracles and there is always the chance of a miraculous healing by God but I feel at peace with the path I currently see before me.

I’m sad about a lot of things and maybe even mad and scared about a few but I will not be mad at God for one second.  It is only by His grace that I have children and I will do my best to be the best possible mother I can to both of my beautiful, perfect boys.

Josh and I have both decided to start blogging about this experience.   Not only will it help us sort out our thoughts, but maybe it will help someone else going through something similar.  I’ll probably post a link to mine later.

Again I love you all and thank you so much for your prayers.  Please continue to pray for a miraculous healing for our boy or that I can at least make it as far as possible with this pregnancy so the surgery will be as safe as possible.

 

Categories: Discoveries.

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The Beginning

9

March 18, 2011

 

 

My future posts will be MUCH shorter and probably include a picture or two…

Oh gosh, where should I begin with this story…

At the end of August my husband and I went through some very difficult things.  In September I found out I was 3 weeks pregnant with our second child.  Our first child, our son Jayden, was only 8 months old.  I was going to school full time, working part time, writing a thesis, building a show based on my thesis at work, mourning and recovering from the things my husband and I had just gone through, raising a baby boy and now I had first trimester morning sickness and exhaustion.

I am still not sure how I did it, but I managed to complete the semester and even got straight A’s.  (Note: I just got a letter yesterday 4/8/11 that I made the Dean’s List for maintaining a 4.0 while take a full credit load! Yay!)

In December we learned it was a boy and to be honest I was a bit disappointed and mad.  Even though I knew it was foolish I thought that since I had returned to God in the recent trials that He would bless me by giving me the girl I wanted.  But in the end in only took a few days for God to show me that this little boy’s life was not about me and what I wanted.  God told me he has a plan for this boy and I am only the vessel.

I started to become excited about my two little beautiful boys, so close in age, running around as best friends, tumbling in the grass and causing general mayhem together everyday of their lives.  I thought about how I would teach them that nothing matters more than family and I would pray everyday that they would be good to each other forever.

I joked once with my Mom that I felt sorry for the new boy coming because there was just no way he could be as beautiful as Jayden.  Jayden is truly handsome…and SMART!

My second trimester started and then the second semester started and besides the continued morning sickness everything was going perfectly.  I had only gained about 2 lbs total and both I and the baby were measuring perfectly on schedule.  (Side note: Because I know there will be a question or two about it- I am plus size and so I’m only supposed to gain about 15-20 lbs for the whole pregnancy.  I was carefully watching what I ate and staying very active because I know the pounds come quickly in the third trimester.  My Dr. was happy with my weight gain.)  I was doing my best to have a happy, healthy pregnancy despite the stresses I was under because I am due May 21st and finals are the week of May 2nd.

Then suddenly, like a fast moving storm you can’t control, everything changed.

On Monday, Feb. 14th, Valentines Day, I had a regular 26 week check-up (it’s normally 28 weeks but I was a bit off because I had missed an appointment earlier).  Since almost every appointment I’ve had, I’ve seen a different Dr. I will just abbreviate their names to first initials. Dr. F noticed I had gained a total of 5 lbs and my belly was measuring about 4 weeks ahead.  She guessed it was just that I had gained all 5 lbs in my belly and it didn’t concern her.

On Thursday the next week, I was grabbing lunch after class and heading to work.  While I waited for Einstein’s to make my sandwich I realized I had just had about 6 contractions in 10 minutes.  I had been having Braxton-Hicks for a while but this was a lot.  I called the nurse advice line and they had me come in to be checked.  Sure enough I was having a lot but the baby was moving and the heart rate was good.  Dr. N checked my cervix and it was still 3.9cm in length so I wasn’t “in labor”.  The Dr. sent me home, told me to drink water and rest but told me to come back the next day for a recheck.

On Friday while Dr. P was doing the recheck she measured my belly.  I was one day away from being 28 weeks and I was measuring at 37 weeks.  Dr. P did an ultra sound and realized I had too much amniotic fluid, a condition called Polyhydramnios.  Normal is between 5 – 20 cm and I was measuring at 25 cm.  She said this can be caused by something wrong with the baby so he’s not swallowing the fluid like he should or it can be cause by no apparent reason.  She referred me to Perinatology.

On Saturday (28 weeks gestation) I went to a concert and even though I was sitting and drinking water the whole time I had to leave early because of the frequency and intensity of my contractions.  When I got home I was able to get them under control.

On Sunday, after having contractions all day long, resting and literally drinking over 10 sixteen ounce glasses of water, I went in to Labor and Delivery.  They measured my cervix at 3.8 and so sent me home.  The Dr. there said that because I have Polyhydramnios I was going to have a lot of contractions and that I should only come to L & D if they are intense, consecutive or I have other labor signs.

On Wednesday that week I saw Dr. H at Perinatology and he couldn’t see anything wrong with the baby but warned me that didn’t mean there wasn’t something there it just meant he couldn’t see it.  The baby was measuring right on schedule at 3lbs but I now had about 30 cm of fluid and was contracting like crazy.  He told me I should probably not continue with school since I have to walk about a mile a day to get to all my classes and that I really needed to rest as much as possible.  He said, “At this point, we are hoping you make it to 32 weeks”.  I spent all day Thursday and Friday figuring out how to remove myself from school and set up working and writing my thesis at home.  Dr. H gave me Indomethicine to slow the contractions and maybe reduce the amniotic fluid, but I could only take it for two days.  It made me sooooo sick and dizzy and I couldn’t eat.

On Friday I called the office and they switched me to Procardia but the Dr. who was on duty wanted me to come see him on Monday so he could check me himself.

So we are now at three weeks since the first appointment where something was a bit off.

On Monday (29 weeks, 2 days gestation) I saw Dr. S.  at Perinatology.  He saw what he called a “double-bubble” on the ultra sound.  He said this means the baby had doudenal atresia and will need surgery shortly after birth to fix it.  He said he would have Neonatology contact me to set up an appointment to discuss the surgery.  He then told us that about 25% of infants with this condition also have Down Syndrome.

At first I thought I had no need to do the amniocentesis because I had no intention of ever having an abortion so what difference would it make?  But I knew the test would show that our baby didn’t have Down Syndrome and everyone could just rest easier with that reassurance.  So we decided to go ahead with the test.

They told me it would take two weeks to get the results back.  I put out notes on Facebook and asked people to pray but in my heart I just knew our baby was ok.

I can’t remember what day it was but that morning I lost my mucus plug and I even the Procardia wasn’t making the contractions stop all day.  The nurses had me go to L & D again since it was close to 5 pm and their office was closing soon.  At L & D they measured my cervix at 3.1 cm in length and closed so they sent me home.  They offered me shots and more drugs to stop the contractions but I felt like as long as they weren’t making me “progress” I could handle them at home.  My amniotic fluid was measuring at 35 cm.  The nurse said that, unfortunately, because of my condition I would probably be in and out of L & D several times this pregnancy.

On Friday my Mom helped me take my son Jayden to his one year check up (two months late because of insurance issues).  He had to get 5 shots and 6 vaccinations but he was perfect in every measurable way.

On Tuesday, March 15th I saw Dr. F again for the first time in a month (since Valentines day).  She just listened to the baby’s heart rate which was perfect and measured my belly.  I am now measuring at 43 weeks and I am only 30 weeks pregnant.

Yesterday, March 16th someone called but I decided not to answer it because I was napping.

I had just been chatting on AIM with my husband about, what he had for lunch, how I was going to finish school, how his work was going so well and how he was really excited about some new things he was doing with music.  I decided to see who had called, they didn’t leave a message.

When the Kaiser operator told me it was genetics I started to get nervous.  She offered to connect me to them.

While the line rang I had a million thoughts.  I thought “surely she is only calling because the results are good and she wanted me to know right away”.  ”They wouldn’t call you and tell you bad results over the phone”.  ”Why am I shaking?”  ”Why am I afraid?”  ”I should tell Josh they called and I am waiting for them to answer and that I’m a bit nervous and shaking.  He’ll calm me down.”

But before I could type to Josh, the lady from genetics answered the phone.  She said “I know it’s a week early but I have the results from your amniocentesis.  It was positive for Down syndrome, your baby has trisomy 21.”

She first asked if I would be “continuing with the pregnancy, even though we are so far along” and I said “absolutely” with out even blinking.  She then began to ramble off all this information about groups we could join and websites we could look at.

I could feel the lump in my throat growing to uncontrollable proportions and I knew I was doing my best to keep it together.  She kept asking if I had any questions.  I couldn’t think of any so I started to think if anyone has asked me one lately.  I remembered my Mom asking if there are different levels of Down syndrome.  The lady explained that there are but only time will tell how much my son has.  The amnio can’t tell us that.  Then said said things like “years ago they only lived to be 21 years old but today they are living to 65″ and “many are able to go to school and have jobs and some even live on their own or with friends”.

And suddenly it hit me.

This is going to be hard.

I began to sob.

I truly thought the results would be negative.  I truly believed my son would be fine.  Despite all the warnings I did not see this coming.

She offered to be there if I needed to talk even though I don’t know her that well and said she would stop by my appointment with Dr. S on this coming Wed to give me an informational packet.  I said “thank you” and hung up.

I wanted to tell Josh right away.  But I couldn’t AIM it to him and I didn’t want to tell him while he was at work.

So I told my Mom first.

She immediately held me and we cried together.  She told me “this isn’t right”, “this is too much”, “it wasn’t supposed to be this way”.  All things I was thinking but couldn’t even put into words.

She called Josh for me and told him I needed him to come home.  She couldn’t tell him why but he needed to come now.  He and my Dad carpool to work since they both work downtown so he and my Dad arrived at the same time.

We talked, we cried, we prayed.

We called his family and sent texts and emails to our friends and co-workers.  His Mom and Dad came over that night and prayed with us.  We all thanked God for the blessing he was giving us and for making us all the perfect family for this amazing guy that was coming.

My husband started a blog so that he could try to sort it all out and I decided to do the same.  We both decided that since this was something we knew absolutely nothing about, maybe someone could benefit by reading about our journey.  His blog (which is so far MUCH less wordy than mine-I wish I could do that) is here: http://downsyndromedad.com/

The next post I will do is what I posted on my Facebook and in my birth club forum.  It is truly how I felt at the time I wrote it.

Since then I’ve had many many more thoughts and learned a few things.  Some of my thoughts are sad and angry and some are at peace with everything around me…  I intend on continuing my story by being as open and transparent about everything I think, feel and learn on this journey.  But for now, I had to write this one very very long foundational post to bring everyone up to speed with where we are now.

My next appointment is with Dr. S on Wednesday that I had already set up before hearing this news.  I had also already set up an appointment with neonatology because no matter what the test results were he was still going to need surgery.  So those two appointments will be one right after the other.  Then we will tour the NICU and L&D and we will get pre-registered at that hospital since it is a different hospital than I was planning on delivering at.

My future posts will be more personal and less time-line but I had to tell the story from the beginning.  I’m exhausted now and going to bed.  Thank you for coming on this journey with me.

Categories: The Beginning.

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