Tuesday, January 22, 2013

Update on Baby Girl's Heart

We had our fetal echocardiogram today to get a better picture of Baby Girl's heart.  She sat still for most of the scan but for the last part put her dancing shoes on and made it a little more difficult for the sonographer.  Haha!

After the scan, the doctor informed us that our daughter has what appears to be an inlet VSD?  Basically she has a pretty large hole in her heart which will require correction in the form of open heart surgery when she is a few months old.  Thankfully this likely won't have too much of an impact on her delivery and she should still be able to be born naturally rather than by c-section.  It's also good news that she will have a few months to put some meat on her bones before the surgery!

We will keep you updated as we get more news!!  Keep us in your prayers!!

Sunday, January 20, 2013

23 Week Update

23 Week Bump

General Update:
These past two weeks have been absolutely wonderful.  Caleb and I have fully recovered from the news that our daughter will have Down syndrome.  I don't think we've had one sad day since I wrote the post about getting the news!  Sometimes I wonder if something is wrong with us for accepting the diagnosis as quickly as we have.  I've read that some people feel detached from their growing belly and pregnancy in general.  We haven't had that problem at all!  In fact, this is probably the happiest we've been since we found out I was pregnant!  This morning, while we were laying in bed watching Baby Girl dance in my tummy, we were both overcome with how excited we are to meet her.  We both feel so blessed to be expecting a precious little girl.

In the past two weeks, we've been overwhelmed with the outpouring of support we've received from family, friends, and strangers!  It has been so heartwarming and comforting.  I became a part of a group on Facebook for Maine families who have children with Down syndrome.  People I have never met reached out  to say congratulations and to assure us that their children were the biggest blessings in their lives.  I am so excited to move back to Maine and meet some of these families!  Another blog that I have fallen in love with is noahsdad.com.  Check it out if you get a minute!

This week we have a fetal echocardiogram scheduled for our little one.  This will allow us to get a better look at her heart.  Our fingers are crossed that we will get more good news!  Keep sending your good vibes our way!  We will update you with the results when we get them.

Thank you all for letting us know that you will love our little girl no matter how many chromosomes she has! 

Whoa!  She is getting bigger!!

Update on our Daughter's Development
-Her face is fully formed.  We can't wait to kiss those cheeks!-
-She's listening to our voices and my heartbeat.  Guess I better start reading to her!-

Saturday, January 19, 2013

Inspirational Song

This song came on the radio when Caleb and I were driving to his parents' home to tell them the news about our daughter having Down syndrome.  It was so comforting and made me cry like a baby!  It feels like it was written for our little girl.  This new journey we've embarked on is somewhere we never dreamed we would go, but it will be a great ride.  Enjoy the song!  :)

Sunday, January 6, 2013

Week 21--It's a Girl!

Our daughter!

21 Week Bump--Over halfway there!

General News:
Caleb and I had our mid-pregnancy ultrasound on December 13, 2012.  On the train ride to Tufts, we were talking about whether there was a boy or a girl in there.  I was convinced that it was a girl, while Caleb was sure it was a boy (maybe just to contradict me).  Pretty early on in the ultrasound, we found out that my maternal instincts were right on the money!  Caleb immediately started to have anxiety about what it would be like to raise a girl, but we were happy.

A little while later during the ultrasound, Caleb and I started to suspect that something was not right.  When I asked the ultrasound tech if our baby girl looked healthy, she responded, "I don't know, I just take the pictures".  One of our friends, Melony, is an ultrasound tech and in the past she had informed me that this is what they tell patients when things are not normal.  My heart sank.  When the long ultrasound was finally over, she asked us to sit tight and said that a doctor would be in to see us shortly.  After waiting for what seemed like forever, Dr. Panda came in and informed us that our baby had a few bright spots in her ultrasound:  an echogenic bowel and an echogenic intracardiac focus.  Of course this meant nothing to us, so she went on to explain that these were soft markers for Down syndrome.  She was clear in saying that this did not mean our baby had Down syndrome, in fact, these markers can also show up in babies who are perfectly healthy.  She offered us a meeting with a genetic counselor which we agreed to and asked us to schedule another ultrasound to get a better view our our baby's heart.

After the ultrasound, we had to meet with Dr. Critchfield (our doc).  She explained to us our options for testing and said that, given my age (baseline risk for my age is 1/1,400), chances were that our baby was perfectly healthy.  We were starting to feel a bit better.

Meeting with Amy (our genetic counselor) was a breath of fresh air.  She was really kind and empathetic.  She calculated our risk of having a baby with Down syndrome using our family histories and the ultrasound findings to be 1/100.  She gave us more information about our testing options and we opted for the noninvasive pregnancy test (NIPT), a new test which has only been out for about a year.  This test works by pulling some of the baby's DNA out of my blood and has been proven to be incredibly accurate and near diagnostic.  We would receive the results in 10 days.

On December 26, 2012, Caleb and I were in Madawaska.  I had a feeling we were going to get the call that day and stayed in bed praying for a full hour before I went upstairs.  I prayed for our baby girl to be as healthy as possible.  I prayed for strength.  I prayed for understanding.  Finally I made my way upstairs, where my dad and Caleb were chatting in the living room.  I realized that I had forgotten my phone and asked Caleb to go get it while I went to the bathroom, just in case Amy called.  Sure enough, as Caleb was climbing up the stairs, my phone started ringing.  When he answered, he said he immediately knew that Amy was in "delivering bad news" mode.  She asked where we were, if I was around, and if this was a good time to talk.  We sat down at the kitchen table and put her on speaker phone.  "The test results are back.  They show that your baby has a greater than 99% chance of being born with Down syndrome."  It literally felt like all the oxygen had been sucked out of the room.  I've heard people say that before, but I didn't understand it until that point.  Amy went on to talk about meeting with a geneticist, setting us up with a family who has a child with Down syndrome, etc, etc, etc.  We were listening but we weren't.  It felt surreal...  Like a bad dream.  She offered us an amniocentesis to confirm the results, but we didn't really see the point at that time.  We hung up with the understanding that we would be in touch in the next few days.

It's amazing how your life can change so much in such a short amount of time.  Caleb and I sat crying while we tried to process the news.  What did this mean for our daughter's future?  For our future family?  Why do other people who drink, smoke, do drugs, have an unhealthy diet, get pregnant when they are older, etc. get to have healthy babies and not us?   After I stopped crying, I immediately jumped into research mode.  I grabbed a laptop and started reading everything I could find about Down syndrome.  I read a short letter called, "Welcome to Holland" which is a beautiful way to describe what it's like raising a child with a disability.  I also bought the book, "Babies with Down Syndrome: A New Parents' Guide", which has been wonderful and very helpful.  I learned that there is nothing I did or didn't do that caused our baby girl to have Down syndrome.  Down syndrome doesn't discriminate based on race, level of education, or anything.  It just happens.

Slowly, we started to see the up-side.  Our baby girl will still do everything typical babies do, it will just take her a little longer to get there.  She will still have her own personality, interests, dislikes.  She will be her own person.  Her quality of life will be just fine!  Another pro that I shared with Caleb is that the divorce rate for couples who have a child with Down syndrome is lower than that of the general population.  Yay!  We are determined that our daughter will do great things, and we will help her get there!  In the beginning, that will mean taking her to physical therapy, occupational therapy, and speech therapy appointments frequently.  As she grows up, we plan on having high expectations for her.  She will teach us a great many things and we can't wait to learn from her.  Our hope is that our daughter will teach everyone around her that she is more like them than she is different from them.

Upon our return to Boston, we had an ultrasound focusing on Baby Girl's heart.  With Down syndrome, there is an increased risk of heart problems, some of which may require surgery.  Thankfully, the doctor said that her heart looks fine.  We scheduled a fetal echocardiogram in a few weeks, just to be sure.  We also had an amniocentesis to confirm the results of the NIPT.  Caleb was watching the ultrasound screen during the procedure and said our daughter was trying to swat the needle away with her hand, haha.  Dr. Critchfield called me on Friday and gave us the news that we had been expecting.  We are certain that there's a baby girl in there and we are also certain that she has Down syndrome.

We started spreading the news to our families right after we got the phone call in Maine.  Everyone was initially shocked, but very accepting and understanding.  It was so encouraging to see how much love and support our baby girl will be surrounded by.  Since then, it has been a roller coaster ride of emotions.  Some days, we feel really good, but other days we are still a little sad.  Thankfully, the sad days are becoming less frequent and are making way for excitement.  We can't wait to meet our daughter and love her so much already.  Every time we feel her kick, we are reminded that she is a baby, not a syndrome.  We already can't imagine our lives without her.

Our Request:
Please try to use sensitive language around us.  We know it's sometimes a habit, but please try to remove the word, "retarded", from your vocabulary.  We find it extremely offensive.  Also, please try to use "person-first" language.  We are expecting a baby with Down syndrome, not a Down syndrome baby.  She is a person first, not a syndrome.  It would also be appreciated if you did not tell us, "I knew someone who was supposed to have a baby with Down syndrome and they came out perfectly healthy".  Our baby girl has Down syndrome, we have accepted it and would appreciate it if you could do the same.

Please do not bring up abortion.  We were told by the doctors that it was rare for parents to continue a pregnancy when they get this news--90% terminate the pregnancy.  This is not the option for us.  As far as we can tell, other than an extra chromosome, she is as healthy as can be.  She will still need to be fed, diapered, cuddled, etc.  She will still go to school and have crushes on boys, etc.  Things will be different than we had planned, but different is not a bad thing.

When you talk to us about our precious baby, please make sure you do not say sorry.  A new life is nothing to be sorry about!  We couldn't be more thrilled to be expecting a baby girl.  We made the decision to tell people about our baby girl's Down syndrome now so that people can get any initial sadness, awkwardness out of the way.  This way, when she is born, she will be welcomed with open arms, smiling faces, and tears of joy, not tears of grief.

What is Baby Girl up to this week?
-She has a lifetime's supply of eggs in her ovaries-
-Her digestive system is functioning so she's working on preparing that first poop for us to clean up-