Today was the last day.....

Ok little man we have made it to 23 weeks and 6 days.  According to The State of Michigan tomorrow you are considered "viable".  To me it means nothing because several weeks ago when I was given the option to discontinue pregnancy I chose not to.  Since then I have not gotten any more bad news and hope for that to be the case your remaining 15 weeks in utero.  You have a good heart with no defects, you have two functioning kidneys, and you are swallowing appropriately.  Keep up the good work!!  We are not sure about your hands and arms though so next time we see you in an ultrasound can you please show us your hands and arms?  You should also know that you have a mommy, daddy, and big sister that are anxious to meet you, along with several other family members. 

This week you have turned into quite the acrobat.  We are able to sit on the couch and watch you move from the outside of my belly.  I don't mind when you keep me awake night, just know that I will have to keep you awake in the day by drinking coffee.  Tuesday I will meet with the NICU team to get any questions answered and a tour in case you need a little help when you are born.  I am hopeful that since we will be so prepared you show us that you are in charge and not need any help. 

Stay strong little man.  We love you.

Links with info about Trisomy 18

Here are a few links about Trisomy 18. 

http://www.trisomyhelp.org/


http://www.chromosome18.org/TheConditions/Trisomy18/tabid/130/Default.aspx


http://www.trisomy.org/resources/soft-publications-concerning-trisom/trisomy-18-facts/

23 Weeks ~ 17 more to go!

Yes, this is me.  23 weeks pregnant.  This week went pretty well.  I found a new OB.  One that will allow me to have a c-section.  His office has also scheduled me with the NICU team to discuss my options and possible scenarios at time of delivery.  Sleep is finally returning to me slowly but surely, I can fall asleep but fail to remain sleeping through the night. 


On another note...
Every time my daughter says "it's not fair" I find myself thinking deeper into the saying.  FAIR.  How can this be fair.  I feel like I am being punished for something.  Why is it I have to have my son's life dangled above my head as punishment for some unknown crime?  Why is a question we may never have the answer to, but there is nothing more to do than live each and every day and appreciate those and what you do have because you never know what tomorrow may bring.

~ Late Start ~

I know, I should have started with day one but thankfully I keep excellent records and have a good memory.....

My Son Amir's Journey

 

I have decided on using "Team Amir" as our slogan.  Because Amir will need an entire team of supporters.  I  certainly can't do what I need to for him without the support of others.  Everyone plays an important role in Amir's team from my family, other families going through the same struggle, medical providers that believe in my son as much as I do, and everyone we can share our story with to allow others the same chance and hope that we have.  "Trisomy 18 is a diagnosis not a prognosis" ~borrowed from a friend

December 16, 2011:  Today I found out that I passed my CPC exam, I came home and couldn't wait to call and let everyone know!!  For some reason a late cycle did not cross my mind until 8:30 this evening, so off to Dollar General to get "the test".  Less than 1 minute later.....2 lines.  NO WAY!!!!  I had begged my husband for another baby for several years and had actually given up years ago on asking any more....How lucky to have two good things happen in the same day!

December 20, 2011:  CRASH!!!  Yes, I did just get hit by a garbage truck in my brand new car.  What does this mean, a trip to the ER after telling the police officer that I was pregnant.  Hello ambulance ride....and and several hours in the ER.  At least I got an ultrasound....worst part was the ER policy is to not let the patient see the monitor.  I know they tech is not allowed to tell you anything but it never hurts to ask...Right?  All I wanted to know if there was a baby in there.  I did get out of her "I saw more than I expected, ask the Dr for your due date and the heart rate".  Then I had to wait on the Dr.  Finally he came back and confirmed there was only one baby and that I was six weeks and one day along and gave my my due date 8/13/2012.  Yay!!

January 12, 2012:  Nurse OB intake appointment.  Sure I will take the blood test....why not....since it has been 10 years since I had a baby.  First set is a no result kind of test and it will be repeated in several weeks for the set that provides results.

February 24, 2012:  Second set of blood drawn.  Nothing eventful at this appointment.

March 1, 2012:  12:05pm Nurse call:  "Your blood work came back today and we need you to come in and speak to the doctor".  Immediate nausea sets in.  I ask "does my baby have Down Syndrome?"  she quickly says no.  The positive screen is for Trisomy 18.  "DO NOT GOOGLE IT"  Can you come in at 3pm.  Great, now I have to wait 3 hours how am I supposed to work?  First thing I do, call my mom.  Second thing I do.....GOOGLE Trisomy 18.  I know she said not to, but she never should have told me what it was if she didn't want me to look it up.  Finally appointment time.  I get this speech from my Dr "we have a lot of false positives so really you can't worry right now"  I finally get an ultrasound that I get to see my little baby.  Where we are told that there is nothing abnormal with the ultrasound, but he wanted me to see the specialist and have an amnio done if they recommend it.

March 3, 2012:  Since my Dr's office was not able to tell me if I was having a boy or a girl I went to Baby Envision.  Big sister Adrianna got to make the announcement.

March 14, 2012:  Today I see the specialist.  To be completely honest, I believed my Dr when he told me that my ultrasound was fine, and hadn't done much worrying.  I guess the level II ultrasound is much more accurate than a normal ultrasound.  First done by a Resident OB, nothing said.  Then done by the nurse, again nothing said.  Finally the Maternal Fetal Specialist comes in and starts her ultrasound.  We hear choroid plexus cysts, slight strawberry shaped skull, some questionable arm deformity, 2 vessel cord, and he was measuring smaller than he should be.  She tells my mom and I that she is very sure that he has Trisomy 18 but I needed an amnio to confirm.  When asked if I needed some time to decide I didn't because I knew going in that I would only have it done if she suggested it, I would not ask for it.  After a few tears and a trip to the potty here we go.......HOLY CRAMP!.....that hurt.  I seen in the shadow how long the needle was and had to close my eyes.  I didn't want to talk about it with my mom who was with me, to my husband who was going to ask why I was not at work, to my daughter that also would wonder why I was not at work, to my sisters, to NOBODY.  I cried all night.  My daughter was very mad at me because I wouldn't tell her why I was so sad....not that I wouldn't, I couldn't.  I could not bring myself to tell her.  She wanted a brother so bad and now I was going to take that away from her before she even got a chance to be a sister. 

March 19, 2012:  FISH test results came in today.  Dr explains that there is a full 3rd 18th chromosome.  So this is it.  Diagnosis confirmed :(  I had already had that gut feeling it was for sure but I had hope that there could be something else.  Now what?  I cry for several hours.  I try to hide it but people just know that something is wrong. 

March 20, 2012:  Call to my regular Dr because my next appointment was with the midwife and I wanted to see him.  So I get to see him today.  Yay, another look at my baby.  Look at how perfect he looks, I am still in shock that there is something wrong. 

I also told Adrianna today that there is something wrong with our baby.  She did not take it well.  Everything I told her that could happen she had an answer as to how the doctors should be able to fix him.  That is their job right?  Fix what ails their patients.  She is only 10, and this was a lot for her to take.  We cried for an hour together, and decided he is our special blessing and we will cherish every moment we are allowed with him.

March 23, 2012:  Today my final amnio report is back.  I know, I already knew that he has Trisomy 18.....why am I still so upset to hear it?  The specialist wants me to come back to speak to her on what to do next. 

March 28, 2012:  Back to the specialist.  Today I made my point clear that I was going to continue with my pregnancy.  I was hit with statistics, but I already knew as I have been on the internet for countless hours crying and researching. 

Can I get some good news...PLEASE!!  Baby Amir's heart is good, and his kidneys are good, and the only visible defect is something with his arms or hands. 

April 8, 2012:  Happy Easter :(  How can I celebrate a holiday when I don't know if I will be able to share it next year with my whole family.  So I fake it for my daughter.  I get up, hide her Easter basket, put the turkey in the oven and return to bed.  We have lunch, go to my mom's for dinner, then return home back to my bed.  It seems I have spent a lot of time here lately but certainly not sleeping.  I am hopeful that one day I will be able to sleep again normally.

April 15, 2012:  Happy 10th Birthday Big Sister Adrianna.  Again, lots of sadness as I remember the past 10 years of her Birthday Celebrations.  Still very hopeful that we get to do the same with Amir.