FINGERS and Swimming space increase...lol

5/29/2012  Well Amir you have more fluid this week than last.  I did tell my doctor that draining the amnionic fluid was not going to happen though.  We get to go back next week to see how much more fluid gain in another week.  Yesterday we had 38cm and 41cm, last week we had 34cm and 37cm.  I did remember to ask what was "normal" and 25cm is the high end of normal.  I have a short week at work this week due to Memorial Day, I am hoping this to be my last week of work so I can relax and have some relief.  Next week I go to the maternal fetal specialist and hit 30 weeks YAY!!!  Our goal is to make it past 34 weeks so Amir's lungs are fully developed.  I still hope to go longer than that though.  I will get an updated weight Monday with her and I am sure fluid levels will be checked but not compared until my follow up Wednesday.   

Biggest news of the week.....we finally see fingers on an ultrasound picture.  After being told several different things about Amir's hands and fingers it is finally confirmed that he does have fingers.  We saw forearms last time which we were also told were missing/underdeveloped.  Very good news that my little man will have the ability to "touch and feel". 

 See them?  In the top hand fisted.

Feet again for Aunt Missy :)

And a belly shot 29 weeks and 1 day.





Kind of strange how things happen....

I got a call at 3:06am......My youngest sister Kelli was in labor and my mom is 3 hours away.  She was hours or less away from having a c-section.  I just had a conversation yesterday with a girl at work that I wasn't going to be able to go to the hospital to see her baby, but in the rare chance I would be able to go I would have to go alone when nobody else would be there.  I couldn't imagine being alone having a baby so I didn't have a second thought about going up there with her. 

As I waited in the chair in the hallway I was sad, I choked back at least a million tears.  Not about her having a baby but with all the uncertainty with mine. 

5/25/2012 at 5:36am baby Isabelle arrived.  5 pounds 9 ounces and 17 inches long.

Kelli and I both cried a little with her first whimper.  I left with Isabelle while they finished up her surgery.  I got to feed Isabelle her first bottle and hold her even before her mom did. 

Baby Amir was sleeping for the first hour, but must have known something was going on because he was awake and kicking me.  He kicked me through the entire surgery and while I was in the nursery with Isabella.  He usually sleeps until about 10:00am so this is not his norm. 

As soon as I hit the down button on the elevator to leave holding back was over.  I am glad I was able to hold back at the hospital though because telling my story to everyone would have been awful. 

Congrats to my baby sister :) and her new baby.  I am glad I got to be there.


Here is our belly shot today 28 weeks + 4 days.

Seen little man twice in one week!

Sunday May 20th I got to see Amir on 4d ultrasound at Baby Envision thanks to a very special organization Sustaining Grace.  Scott and Diane's daughter Grace was also diagnosed with Trisomy 18 early in pregnancy and they chose to carry their daughter as I have my son.

I loved being able to see him and direct the tech where to look.  I finally got to see that Amir does have forearms and hands and fingers.  I believe what he has is called radial aplasia.  It is where there is no radial bone in the forearm.  His forearms are short but they are present.  This occurs in less than 5% of Trisomy 18 babies.  It still seems we have dodged the 90% chance of congenital heart defects.  So we will take the arm thing with a huge sigh of relief.

We even got to pick out a heart beat animal.  Big sister Adrianna picked out the monkey because it will match the Rock Star Monkey bedding set we picked out. 

Today May 23rd I had a routine 28 week OB appointment.  Well, I failed my 1 hour glucose tolerance test :(  so I will have to follow a high sugar diet for 3 days then have a 3 hour glucose tolerance test.  My belly is measuring 37cm (normal is 28cm for 28 weeks pregnant) so I got a surprise ultrasound today.  I got to see Amir but the real reason was to check my fluid level.  3 weeks ago I had 30cm pockets of fluid and today I had 37cm pockets of fluid.....so I get to go back in another week for an ultrasound recheck of fluid level.  My OB is checking with the maternal fetal specialist to see if putting me on a medication called Indocin would help to lower the fluid level.  One good thing about this medication is it is also used to treat preterm labor and I have been having contractions daily for weeks now, maybe that would help with those as well.  The other option he will be talking to her about is draining the excess fluid (I will be politely refusing) the risk involved to Amir is not worth the benefits to me. 

As always thoughts and prayers are always appreciated.

I give you breath....

May 14, 2012

Today I spent the entire day in Labor and Delivery.  No, not for labor or anything close.  I went to the ER because my lap band fill port felt like it had turned and it hurt bad.  Our ER says anytime after 20 weeks pregnant no matter what you are seen for you have to go to labor and delivery to be seen.  Kind of silly I know.  It just happens that I was also having contractions every 2-3 minutes apart.  Nothing new as they are the same as I have been feeling for the past couple of weeks.  So I got almost 10 hours on the contraction monitor and almost 10 hours of hearing baby Amir's heart beat.  Late in the day my OB came in and did an ultrasound.  Yep he confirmed I have a ton of extra fluid.  BUT we also got to see breathing for the first time.  You know most parents do not have to worry about that but it is my biggest fear, Amir being born and not knowing to breath.  It was very reassuring to know that he is at least practicing.  I can't wait to hold and meet my little man <3

5 more days to our 4d ultrasound I can't wait to post the video!!

27 Weeks tomorrow

27 weeks pregnant tomorrow, today is Mothers Day 5/13/2012.  We did not have much planned today, I enjoyed some quiet time while Adrianna and Andrew napped for a couple hours this afternoon.  I went to see the Chiropractor last Friday and he is going to be my new best friend for a while :)  I have pretty bad upper back pain but he told me it is only because water weight is much heavier than baby weight and since I have so much extra fluid that will not get any better :(  Still not complaining though. 

My biggest craving at the moment is barbecue chicken breasts, so we had dinner at home after talking about eating out all week.  Adrianna entered the "Why my mom deserves a day at the spa" essay contest at school and won me a full body massage at a local spa.  Her principal called me Friday and told me that she had won and she was going to read her essay to me on the phone.  I cried before she could start.  She talked about Amir and how stressed out I am lately, and how I do so much for her and her dad that She was supposed to bring home a copy for me but she forgot it in her desk.  I guess I will have to post a copy of that later. 

Belly shot update, big difference from 4 weeks ago. 

I have to have a glucose tolerance test one day this week.  Yay!  Not really but it is necessary.  Then on Sunday we go to Baby Envision for a 4d ultrasound.  I will get 30 minutes on DVD of baby Amir and a heart beat animal with his heart beat this is probably the most exciting thing I have to look forward to for the next few weeks. 

GOOD NEWS from the Pediatric Cardiologist

Today we went to the pediatric cardiologist.  Walking in today was sure scary.  I was almost set on getting bad news.  But, he was not able to see a heart defect.  This is our 3rd normal fetal echo, and this means that I don't have to go back and see him again and Amir will have a cardiac ultrasound shortly after birth.  I will have one more in 4 weeks with the maternal fetal specialist.  There is such a high number of Trisomy 18 babies that do have heart defects I am very hopeful that we have avoided adding to the number.

Can someone please tell me what is so "incompatible with life" in my baby's situation?  Because I am just not seeing it in my case. 

This week my husband noticed how big my belly is getting.  I just wish big belly meant big baby.  Amir is still small but hopefully gains some much needed weight these next few weeks.  26 weeks 3 days pregnant today I see my OB in  2 weeks so may not have much to update on until then........

As always thoughts and prayers are appreciated.......

26 Weeks and counting......

Here we are on the eve of 26 weeks pregnant.  This week we see the pediatric cardiologist.  I hope for nothing more than good news.  If baby Amir's heart is good we have a better chance of coming home a few days after birth and skipping the NICU stay!  We have already had 2 fetal echo's that were normal so I can find no reason in my head that this one should be any different. 

Shopping for baby things is kind of scary to me still but I did break down this weekend and buy 2 outfits and some crib shoes for him because I am going to bring him home.  I also completed a gift registry at Babies R Us.  I won't be having a shower before he is born but hope to plan a meet and greet after he is born.  Kind of like a welcome party. 

Today I sent an email to Now I Lay Me Down to Sleep, they offer photography at the hospital in situations like mine, and of course balled my eyes out the entire time I typed it.  But just in case something happens it is important to me to have pictures of as much as we can.

I have been sleeping much better and even had a dream the other night about Amir and he was at home with his family <3 right where he belongs.  Even with all the extra fluid around Amir I am not uncomfortable.  I feel him move a lot.  Last night was the "super moon"  I am not really superstitious but of course had a fear of labor or something else crazy so I was up a lot and so was Amir.  Thankfully nothing eventful happened here with us!  Adrianna and I love to sit and watch him roll around in my belly, kind of has become our new pass time.  I am hopeful that I can still tolerate the extra fluid in the end though because that is likely what determines the day I have my c-section. 

~ Fingers double crossed for our appointment on Thursday, and as always any thoughts or prayers are always appreciated ~

Very Busy Week.....

This past week has been busy to say the least.  Last week I seen my new OB where I measured 10+ weeks ahead of schedule, went to the NICU to meet one of the doctors that will take care of my little man, met a little girl that shares his "diagnosis", and had another ultrasound.

NICU (April 24, 2012)
OMG!  What a scary place.  As soon as the nurse buzzed me in I completely lost it.  Emotions got the best of me and I cried the entire walk to the nurses station as I passed all the baby rooms with parents standing around the incubators and heard the tiny little baby cries.  Covenant Medical Center Saginaw, Michigan, I met an awesome Dr. here Dr. Chi and he assured me that my baby would be treated equally to all the other babies there.  That was big news for me because I have heard of babies with Trisomy 18 not being treated equally or given the same chance.  We talked for almost an hour and he told a story of a baby girl with Trisomy 18 he was there for her delivery and care 16 years ago and her mom had sent him several letters updating him that she was still alive after being told that she would not make it and how saddening it was for him to get the letter two years ago when she would have turned 14 years old stating that she had died as a result of injuries in an automobile accident.  He used another famous little girl with Trisomy 18 that is 3 now as another example Bella Santorum (her daddy was running for the republican presidential candidate but dropped out to be more available for her) so he in no way was discouraging any care that I want for my son at birth.  My birth plan is now near completion in notes here and there I just need to get it typed in a document so my OB can have it in my chart. 

"Stella" (April 29, 2012)
Today Adrianna and I took a road trip to Sterling Heights.  We met Stella and her mom and dad.  Very lovely family.  I have been around handicapped adults basically for my whole life and obviously to become a handicapped adult one must start out as a handicapped infant, then child.  Stella was just under 4 pounds at birth.  Why is this so scary to me?  I have never seen a preemie in real life.  A baby less than 7 pounds scares me.  It makes me think "fragile".   I know it is a phase and will pass when I do meet my little man, but it's still very scary now!  Currently Stella is small, but very happy.  She even let Adrianna and I ~ complete strangers ~ hold and play with her.  She has a trach and had a ventilator until Christmas Eve 2011.  I read her mom's post this week and they have officially turned in the ventilator!  Kind of like a graduation :)  Yay for Stella.  I was comforted to learn where they got really good care for Stella, and know that option is available to me if I need it.  This visit really took away my fear of ventilators.  I actually had an instant feeling of comfort as I got in my car to drive home.  This visit was what I needed to ease some of my apprehensions on bringing home my baby. 

Ultrasound (May 2, 2012)
Today I got to see my little man Amir again.  Priceless!  He currently weighs 1 pound 7 ounces.  This is only the 7th percentile but at least he is on the charts.  I also learned that I have over twice the amount of fluid considered normal.  That would explain the pressure when I stand and walk, but I am not complaining.  Look at how happy he is with all that extra fluid to "swim" in. 

Here are his feet, my sister Melissa loves feet.

We now know for sure that Amir's arms are not "normal", and his left foot is clubbed.  What does that mean?  Nothing to us really. We love him no matter what.  It may in the future mean some altering of his long sleeves, luckily I have 2 sisters that can sew and I am sure one would be willing to teach me :) 


Life in General
Is alright I guess.  I still have a hard time completely focusing on certain tasks.  Some days worry drives me completely insane, others I can't stand talking to or being around people at all.  I feel more comfortable at home than I do out and at work.  However we have bills to pay and NEED the income right now as how long I will be off from work is still a question with no answer.

Adrianna is still being a super big sister.  Every time Amir moves she wants to feel him and watch him kick me. 

My husband is still kind of quiet about the whole thing as he does not do well with grief.