Our Sweet Boy

 

I debated sharing this on this blog, as I separated our family blog for a reason, but our family blog is private, and I want to share our story with everyone, as I have already drawn strength in reading others' experiences who have been down similar paths.

Last week I went in for my 20 week ultrasound, and got some very surprising news. It has been a heartbreaking week, filled with ups and downs, emotions, and lots and lots of prayers. Below are the last three posts from my family blog. I will try to keep this blog updated with posts about our sweet boy.

 

Tuesday, January 31, 2012

What if our blessings come through raindrops?

 

We went in for our 20 week ultrasound. I was feeling excited and a bit nervous for some reason. My mom randomly booked a flight to come out and visit me next week, and in the back of my mind I felt like maybe there was a reason she was coming...like I needed her for something but I didn't know what yet.
The ultrasound started out very exciting. Right off little guy showed us his "boy parts". I couldln't believe it! I had hoped and hoped it would be a boy, but I was still so surprised and so excited! The ultrasound went on, with the ultrasound quietly taking measurements and telling us every so often that such and such looked "normal". I felt like everything was going good! Then she got to his head. She spent a long time looking there, and stopped saying that everything looked "normal." I also noticed his little hands...they were balled up in fists the entire time. When we were finished, she got up and said she would go see if they were ready for my scheduled appointment with the nurse practitioner. Next thing I know, my doctor walked in. She said she wanted to take a look again at the baby, as there were some abnormalities that were concerning. I sat back down, kind of shocked. She proceeded to go through the ultrasound and show me her concerns. His right foot is curved, and his clenched hands are both signs of a chromosomal disorder. But the very obvious thing that she showed me next was his face. He has a large cleft in his lip, and the right side of his brain is showing signs that things didn't fuse together properly. We are being referred to a maternal fetal medicine doctor on Thursday, who will do a more in depth ultrasound as well as an amniocentisis. Until then, we don't have many answers, and all we can do is pray.
I'm so grateful for my testimony and knowledge of the gospel. I know that this little boy chose to come to our family (though I'm not sure why) and I know that he is sent here, for however long, to teach us. I know that while his body may not be perfect, his little spirit is, and he will someday be able to obtain a perfect body. I pray for the strength I need this next few months to still be the mother I need to be for Brynlie and to have the faith that I need in my Heavenly Father's plan for me and out family.

Thursday, February 2, 2012

Answers

Today we went to a fetal maternal medicine doctor to do some more ultrasounds and an amniocentisis. The ultrasound took about an hour...they really looked closely at everything. Then the doctor came in and went over the ultrasound again. She was very quiet while looking and we just let her do her thing, a little too afraid to ask any questions. Then she had us go wait for her in a consultation room. She took about 15 minutes, then came in and sat down. She went over the ultrasound with us, and told us what she saw. She saw the cleft, which she's pretty sure involves his pallate. His ears are very low, and his jaw and chin are hardly formed. His hands were still clenched tightly in little fists over his face. His legs were crossed, and his feet looked webbed. All of these are signs that we dreaded. Trisomy 18. I had been reading about it for the last few days, and as she described each of these signs, my heart sank. I knew the survival rate for babies with Trisomy 18--only 50% even make it to birth. Of those that do, the survival rate after birth is so so low, with the likelihood three times less in boys than in girls. Then she told us she also saw brain and heart defects. All of these things combined made her say with 90% confidence that he has Trisomy 18. We decided to do an amnio just to have a definitive answer, and so we will know how to proceed, especially what we will do if he makes it to birth.
As I looked over the ultrasound pictures when I got home, I realized just how deformed his little body is. His little face, his hands and wrists, some of his limbs are small, etc. I cried as I realized that this precious boy just needed to get a body, no matter what kind of body it was.
The amnio results will come back Monday, and then we will have more of a definitive answer, but I know in my heart that this little boy's time on earth will be very, very short. This was quite shocking news, and it's going to take a long time to get used to. My heart aches when I think of the crib bedding my mom and I had planned to make him, of the star quilt my mom made that I was going to drape over his rocking chair, all the little boy clothes I couldn't wait to buy, Brynlie wrestling down on her little brother in a year or two...My heart just aches. I have definitely felt some tender mercies over the last two days. Flowers waiting at our front door. So many phone calls, texts, and emails of friends from all over telling me our names were on the temple prayer roll and that they were praying for us. We have definitely felt that added strength. Yesterday we prayed to have a peaceful day. During lunch, Brynlie and I went and picked Rich up from work and went to Subway to get a FebrANY 5-dollar foot long. Our hearts were heavy and we thought a picnic at the park might cheer us up. Our next door neighbor walked in behind us and said, "I knew there was a reason I was supposed to stop here for lunch!" As we ordered our sandwiches, he told the cashier to not let us pay for them, that he was buying our lunches. My eyes filled with tears. It was so small, but I truly felt it was Heavenly Father's way of letting us know that he's watching over us, and that He will continue to send angels along our path.

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not, this is not our home
It's not our home

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

"Blessings" by Laura Story