The Beginning

 

 

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.

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13 Responses to The Beginning

  1. Josh says:

    Wow I can’t imagine how long this took to write! Even though I was involved in the entire thing, it was good to read through everything that happened so I can make more sense of it in my head. It’s all been a bit surreal, and still is.

    I know one thing for certain though: we can do anything if we stick together!

  2. Pro says:

    Amanda,
    I am just so in awe of you for embracing this with open arms. It would be really easy to shut down and close everyone out, but as we should have known you would, you are holding your head high and even maintaining a smile most days. These last few months, heck this last year, has not been easy and you have pushed through with such grace – I am truly astounded. You and your family are beginning a whole new journey. It’s going to be a learning experience for all of you, everyday. I am proud to call you my friend and am excited to see what your future has in store. I love you all dearly and I can’t wait to meet your new little man.

    All my love,
    Linds

  3. Andrea Oakley says:

    Sweet Amanda, dear Josh,

    I have been on a very similar journey in my life and I remember my fears, sorrows, and experiences very well. I just want you to know that my thoughts love, and prayers are with you. I am sewing two monsters for your beautiful boys. As you And your Mom said, “this is too much to bear”. And yet you will, with grace somedays and with anger, sorrow, and anguish other days. And all of those emotions are valid and okay.

    All my love,
    Andrea

  4. Andrea Oakley says:

    Oh and I meant to tell you that I got in touch with the Mile High Down Syndrom Association when I was expecting Gabriel and they were wonderful. They had a lot of information and were loving and kind.

  5. Andrea Oakley says:

    Oops Syndrome not Syndrom. 🙂

  6. Connie Fort says:

    Amanda, I am so sorry. Thank you for sharing you experience with us. I can hear your heart and know you Father is so pleased with you and Josh. This is not the end, but the beginning of a miraculous journey for you! I will try to do better keeping up with Facebook! Love you both.

  7. Ashby Daniels says:

    Since I just found your blog, I clicked “If you’re new, start here…” We have definitely been on the same journey! Only recently have I started posting about my daughter’s condition on FB. One day I hope to chronicle her story like you have Levi’s. Thanks for sharing.

    • Amanda says:

      Thanks Ashby. How old is your daughter? If you do a blog, be sure to post a link here so I can read it! =) I haven’t posted here in a really long time. I need to get on it! So glad we’ve connected!

  8. Courtney says:

    Wow!
    I’m just starting to read this, found it by searching for swallowing aversions with ng tube. My daughter is 4 weeks today & we found out at birth that she had trisomy 21. I’m still learning so much, she’s still in the nicu, and am worried out of my brains! Reading about your son had given me some hope! Thank you!

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