Thursday, April 24, 2008

The Road Before Us...

Monday was the day that our entire world was turned upside down. I had this intuition that something was somehow "off" with my pregnancy. My symptoms were subsiding, and I didn't know if it was just that time in pregnancy (around 12 weeks) where that starts to happen, or if there was something wrong. So I called the doctor.

They brought me in at 10:30 to check the heartbeat on the doppler. No heartbeat. So, they sent me for a sonogram. They found a good heartbeat, but also found two very concerning abnormalities... an abdominal defect (omphalocele) and more concerning, something called a cystic hygroma. Basically, it is a thick cystic thing filled with fluid on the back of the baby's neck. The fold on the baby's neck should measure 1-2mm. Our baby's measured well over 8mm. Since my miscarriage was also the result of a chromosomal abnormality (triploidy), they sent us to a genetic counselor. We met for a while with the genetic counselor who basically she suspects another chromosomal abnormality with the baby. When I asked specifically what she suspected, she named two trisomy disorders (trisomy 13 and 18) both of which are lethal, usually with the baby being carried to term or close to it, and then either being stillborn or dieing shortly thereafter. An omphalocele or umbilical hernia is also often present with both of these trisomies. She suggested doing a chromosomal test (called CVS), so we went to Holy Cross Hospital to have that done. The doctor there also measured the thickness of the baby's neck, and said that given the severity of the thickness, that research only suggests a 10-15% chance of viability, meaning the baby being born alive (not a normal, healthy birth or life). There was no ray of hope in anything we heard yesterday. The "best case" scenario would be Turner's Syndrome or Down Syndrome, the worst being the trisomy 13 or 18. Some of the students at Stephen Knolls, the school with children with severe and profound disabilities where Spencer used to work, had those coniditons. The genetic counselor also said she was concerned about a possible heart defect, but that it's too early to tell that.

With my miscarriage last Novemeber, there were 3 days in between the day we found out and the day of my d&c.... three heart-wrenching days of walking around knowing I carrying around my dead baby inside me. This, however, is much worse. There's no definitive end.

And I am scared. I don't know if I am more scared of another miscarriage, of the baby being stillborn, or of the baby being born living and us having no idea how long he or she will be with us. I am scared of the possibility of raising a child with multiple severe and profound disabilities.

I want to pray and ask God for a miracle; but what if He says no? I want to pray and ask for God's will to be done; but I am terrified of what that is. I don't know how to pray for this situation or how to navigate it. All I know is that God hears me, He loves us, and that He will carry us through this.

25 comments:

ThereseAnn said...

Stacy,
I invite you to join our community and find support from many parents to also have had poor prenatal diagnosis of trisomy 13. Whether you do or not, we will be happy to offer you the hope that your child's life and spirit will bring.
Please come and visit our site and email me if you'd like a message board invite...There is always hope... and these families can help you walk that journey,
Your baby and you will be in our prayers...hubby too.
ThereseAnn, mom to Natalia (full trisomy 13) 7 yrs.
http://www.livingwithtrisomy13.org

pauzhaan said...

My daughter, who is now 18, has Turner Syndrome. Ours was a prenatal diagnosis too.

Kyla is a student at our local community college while she pursues a career as a professional snowboarder.

She is tenacious and loving and wonderful.

Should your diagnosis be TS, I hope you can carry to term. We were simply lucky -- most TS pregnancy's do result in miscarriage.

I'll keep my eye on your blog. I wish you the best.

Michelle said...

I was also told the chances of miscarriage (at about 16 weeks) was near 100% due to Turners. Happy to say that we let nature take it's course and I now have a gorgeous, smart, and wonderful 7 year old. Hang in there and keep the faith.

Ashley R Sellers said...

Hi, I found you through a friend and just felt lead to say God is good and you can ask for that miracle--ask for it everyday with faith it will be ok and start praying as if the baby is fine. Keep the faith and we will definitely be praying for you too!

Anonymous said...

please visit www.nilmdts.com

Brandi Bee said...

Wow. i had a cousin born with trisomy 18. She was a beauty. I know yall are having a trying journey. I wanted a baby more than anything and i couldn't imagine something like that happenening. I will be praying for baby Issac. Be encouraged. God still does miracles. He is a very loving God and he loves Issac much more than anyone on earth ever can. I'm sure He wants the best for your baby too. I love you and i'll keep in touch.

Anonymous said...

Stacy,

I am a friend of Kirsten's and wanted to let you know I am thinking of you and praying for you and your husband. I believe God has a miracle in store for you......I also pray for his peace that passes all understanding. I know God will be with you in the delivery room and that his mighty angels will be surrounding you, your husband, family, friends, and most of all baby Isaac.

Hugs to you!

Anonymous said...

prayers from Nebraska. found your blog thru my cousin, Angela, her son just had open heart surgery and has Downs. God is good all the time. You are all in His hands and you have learned massive Truths along your journey. God bless and use you all to His glory. Marcia

Anonymous said...

I wish you peace and faith on your jurney tomarrow the 7th..... i have been reading your blog and i envy you for your strength you have and your faith in god..... he will prevail and make it ok..... i pray for isacc, that he will live in his glory and the glory of god and all that is good. i pray for your family and friends that somthing good will come out of this , where there are clouds you know the sun is behind them waiting to brke thru!

Elisabeth said...

Wow! Reading your story is like reliving mine. I want you to know that you are not alone. When we gave birth to our Matthew, it was one of the most peaceful experiences I had been through in life. God will hold you, that is his promise. Hold tight to your faith. It will be hard somedays. Especially when you are singing songs of victory and triumph in church. Remember that He loves you and you will see Isaac again someday. I always tell people that I have a third son who lives with his "daddy". Thanks for sharing your story with the world. My prayers are truly with you today.

Elisabeth

ruffdiamond said...

I found your blog through Busted Babymaker. From one babylost momma to another, I am so sorry for your loss.

Anonymous said...

Stacy, Spencer & Isaac -

You are all in my thoughts and prayers..Isaac you are now up in heaven with my baby girl Isabella...She will guide you..

I know your pain all too well and I just wanted to say you are not alone! (I felt so very much alone) I lost my Isabella on 6-20-08 at 22 weeks..I found strength thru reading and support groups..

If you ever need another angel mom to talk too please feel free to email me... nicoleasamona@yahoo.com

Hugs & Prayers
Nicole

Anonymous said...

I just don't know what to say. One thing that I'm certain of is that God never put more on us than we can bear. I know that He will give you and your husband peace.
Keep the faith

hzleydqt said...

I just read your story for the very first time and I just want to say I am sorry for the loss of baby Isaac. 33 years ago I was born at Holy Cross hospital and for some reason I was drawn to your post. I had read about your blog on Angie Smith's blog. God bless you!

sharonvw said...

Hi Stacy
I'm only read this post now, as I was referred to your blog by Busted Babymaker. I'm so very sorry for your loss of precious Isaac.
I've had numerous miscarriages and we did PGD with our last IVF which picked up Trisomy 13 (Patau's Syndrome) I can only imagine how devastating your diagnosis must have been as when I heard that half my embryo's were Trisomy 13 during an IVF, I thought my heart would break. So I cannot imagine what the last few months have been like for you and your husband.
((((HUGS))))

Sarah said...

So sorry to read of your loss. I pray God's perfect peace will wash over you and your family.

Diana Hardy said...

Stacy and Spencer,
God has plans that we can't comprehend at times. But they are as he states, plans for our good and not to harm us. For some unknown reason he needs Isaac with him now and he knows that the two of you will continue your faith in him, even at the hardest hours and most difficult times. Jesus and Isaac are with you!

Collette said...

Hi Stacy
I found your blog at Busted Babymaker and I wanted to tell you I am very sorry for your loss. I have a very dear friend whose first born was born with trisomy 13. My heart goes out to you and your family.

Anonymous said...

You are in my thought and prayers. Your story is so touching!

Ronald Arturo Alvarez Bernal said...

From Ronald Arturo Alvarez Bernal, Maria Teresa's Longstreth brother, from Bogotá, Colombia. South América.

Dear Stacy and Spencer,

I have hear from you since a long time ego. Jack´s, my brother in law, grand douhther. As soon as María Teresa sent me by mail Isaac's webb page, I opened and read since the begining the story of Isaac. As you said at the end of the firt part: "I don´t know how to pray", I have to say you I don´t know what to say. But really, from the deep of my soul, I just want to send you a little, simple and humble thought of mine.

Everything what ever God does is perfect. Everything what ever God does has a purpose, and absolutly everything what He does has a deep meaning. Isaac is, not was, he still is, and for ever, a God's creation. Isaac has, therefore: perfection, purpose and meaning.

Isaac´s purpose is to exist, to be, and to live in his lover's heart. Through that purpose he is giving at the same time his meaning. And it is to give to both of you a new meaning in your live, no matter how painfull is what you are feeling in this moment. No matter how sad both of you are, with the time Isaac is going to tell you the meaning that he has had in your lives. How and what, I don´t know, but I am sure he will. And when that happen you are going to see and to understand the importance of this fact for your own existences, and you will be very happy shearing Isaac´s existence, purpuse, perfection and meaning. Just keep praying, keep living, keep together and keep loving, that is what Isaac wanted to say you with his wonderfull and endless sixteen minutes of live. Sixteen minutes, aparently a very short time, but with a huge and deep meaning.

No matter we haven´t met together in the past, through your grand father, my niece Rachel and your aunt Robin, I have met you, and I am feeling very sorry too. But with too much hope in my heart.

Sincerely,

Ronald A. Alvarez Bernal.

Angela said...

I am so sorry for your loss and will keep your family in my prayers. My son died in the womb and was delivered September 6 of 2008 at 32 weeks. The doctors told us he had Trisomy 13 at my ultrasound at 20 weeks. Please let me know if you would like to talk.

Anonymous said...

July 16,1964 my darling Linda and Joyce went to be with God. I had them for 17hours. They will always be a part of my heart and my memory. Now my two adult daughters and four grandchildren also know and remember them. May God bless you with beautiful memories of your precious Isaac.

I know that we will each see our children again.

Lucy and Ethel said...

I have just found your blog, and by now, I have no idea where!

I'm the mom of an angel baby, too. Our Jeffrey was diagnosed with spinal muscular atrophy (SMA) and earned his official wings at 5-1/2 months in 1997.

I still love to hear that Jeffrey's story is reaching new folks, and I thought you'd like to know the same about your little guy :)

Helen/'Lucy'

Heather said...

Wow, I remember these feelings. My 20-week ultrasound this past May also opened these same fears. Different issues, but same fears and, ultimately, the same end. I'm so, so sorry.

Mindy said...

I am new to your blog and as I peeked around was struck by the fact that my daughter was born on the day you received your initial diagnosis with Isaac. I cannot imagine the painful journey you and your husband have been on, but reading through your posts I have been so encouraged by your faithfulness to God and trust in Him throughout it all. God bless you and congratulations on Eliana - enjoy this wonderful new part of your journey knowing God is still always in control and that NO parents knows that they are doing all of the time. :)