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| Celebrating Gandhi's birthday at the Taj Mahal 22w5d |
We let joy permeate us. It oozed out of our pores. It filled our hearts and our lives. We shared our joy with the world. The parts of us that laid dormant through our struggle to get pregnant breathed with life again. We were joyful.
When I woke up yesterday morning, 23 weeks pregnant with two babies I already love so much, I was filled with joy and was excited for our scan. For the first time this pregnancy I was not nervous to go to the doctor. All I thought about was how I'd get to see the babies' faces again and their little hands and feet. I wondered if my suspicions of gender would be proved. I thought about having the cribs delivered and when my amazon package would arrive. The day sailed on quickly filled with joyful thoughts. After dinner I had my prescribed ice-cream. You see, the last time we went the babies were sleeping so we couldn't get the echocardiogram done. Ice-cream helps the babies wake up and move around. I happily obliged.
Sure enough it did the trick. When we arrived for our 7:30pm appointment the babies were rocking and rolling. The doctor got right to it. Baby A was being very cooperative and we ooh-ed and ahh-ed joyfully. Baby A's little hand was nuzzled up next to his or her cheek and was measuring right on target. Baby B was not being as cooperative. After a few minutes the doctor decided to have me lay on my side for a while in the hope that baby B would turn around so we could get a good reading. As we waited Jason and I chatted about baby names. We made up some silly names. We thought of special family members we'd like to honor. We were joyful. Our joy filled the room.
When the doctor came back he was pleased that Baby B had turned to show us his heart. When I saw the image on the screen I felt the joy leave me. I felt it leave the room. In that moment with the beat of Baby B's heart, everything changed. It was very quiet and I suddenly felt like I couldn't breathe. I heard the doctor explain what he saw. I suddenly felt very cold and started to shiver uncontrollably. I knew it was very very bad. I cried as the doctor explained that Baby B has a very rare congenital heart defect called Hypo-plastic Left Heart Syndrome with mitral and aortic stenosis (HLHS). Without intensive, ongoing medical intervention he will not live. With intensive, ongoing medical intervention he might live.
This morning when I woke up, 23 weeks pregnant with two babies I already love so much, the joy was gone and I don't know what to do next. We have so many questions and we don't know where to go to get them answered.
How do I grow a baby only to let it die?
How do we choose a life of pain and surgeries and hospitals for a baby?
How do we give Baby A the life he or she deserves?
How do we do this in India where our jobs (and insurance) and friends are?
How could we afford to go to the states to get our baby the care he needs if we leave our jobs here in India?
How could this happen to us after all we've been through?
My heart goes out to you for this mixed bag of emotions. I don't have any answers to any of your questions, but I do hear you and I'm thinking of you all. Many hugs!
ReplyDeleteOh Kate I am incredibly sad to read this and my thoughts and prayers are with you and your husband and your babies. I know two couples whose baby was diagnosed with this condition and I have just tried to find their blog for you so you can read it. Just if for nothing else but to give you a perspective of another couple faced with this. Their little girl is a beautiful 12 year old now after a lot of operations. There is no 'right' option in this so take whatever time you need. Life just isn't fair sometimes and I wish it wasn't so. There are no right words to say but in your question 'how do I grow a baby only to let it die' (oh to even have to write that is so awful for you Kate) but another Mum I know said she did it so he could give his sister life. Dear God this is not how it should be. xxxxxxxxxxxxxxxxxxxxxxx
ReplyDeleteDearest Kate,
ReplyDeleteI can only imagine the devastation you felt and probably continue to feel after receiving this news, especially when you were finally able to let your guard down and embrace that you are finally going to become a parent. All you wish for is to be able to give life and love to your children and nourish their souls as they grow. The fear of the unknown about the 'known' can be paralyzing. There is no one that can understand your feelings and fears but you. I am sending you a universe of love. I am with you heart to heart. All my love...
thinking of you and your sweet babies....
ReplyDeleteI'm typing through tears. I'm so very sorry that you are faced with this situation after all you have been through. And it makes no sense that you have to make decisions like that about your unborn child(ren). No parent should have to ask themselves those questions. You and your husband will come to the right decision for your family...it will take time and it will be the hardest thing you have ever done but you will know the right answer(s). Again, I'm so very sorry...you did not deserve this and I hate that it's happening to you.
ReplyDeleteThis is so unfair, it isn't supposed to be like this. You have paid your dues and you and your babies deserve nothing but happiness in this pregnancy. I hate that everytime we have a little faith that things will be okay we get the rug pulled from under us. Thinking of you and your sweet babies. Sending you strength and love.
ReplyDeleteSending strength and love in this difficult time. I am just so sorry.
ReplyDeleteOh god, Kate - I'm so so sorry! What is your doctor recommending? This is just terrible.
ReplyDeleteI am so sorry! Sending positive thoughts your way.
ReplyDeleteI am so very sorry to hear this. This is so unfair to you and to your babies. Sending lots of strength and hope to you.
ReplyDeletekd
I am so sorry. The condition of my son may have been different, but I had to answer some of those very questions you asked yourself. It’s not easy, but in the end you have to live with whatever decisions you make. Trust in your heart it will lead you in the right direction for your family.
ReplyDeleteI am so so sorry to hear this. My heart goes out to you and your family. Thinking of you and your sweet babies.
ReplyDeleteI'm here from KC's blog... I am so incredibly sorry to hear what you're going through. I wish you so much strength as you go through this. My heart goes out to you.
ReplyDeleteI'm so sorry for your bad news, and wish you and your family, and the doctors you'll be working with, all the best.
ReplyDeleteTotal stranger here, but please check out this blog http://jouneytojosie.blogspot.com/p/hlhs.html, hopefully it will be an encouragement to you
ReplyDeleteSo sorry about this, no one should have to make such decisions. Thinking of you and your family.
ReplyDeleteThinking of you Kate...so sorry...God bless and best wishes...
ReplyDeleteSending the biggest hugs to you.
ReplyDeleteoh Kate i am so sorry to read this news, sending you thoughts filled with strength and courage, huge squashey cyber ((hugs)) its so unfair, Thinking of you and your precious little ones x
ReplyDeleteCannot imagine the process you are now walking. Does knowing this now offer any in-utero surgery options? Or with twins is that too risky? So very sorry you are in this situation especially after all the pain of infertility and pent-up dreams and hopes. Love does surround you and I hope this helps even a tiny bit.
ReplyDeleteThinking of you and your babies. This has to be so hard...
ReplyDeleteI'm so so sorry. I can imagine how hard and painful this would be. We grow so attached to these little beings who move inside us and it's devastating when something is wrong that could or does threaten their lives. I lost twins last year and it was the worst experience of my life. I pray that you can find a solution for your baby and one that allows him or her to have a relatively healthy life. I know you need a lot more information and the decisions you will face are going to be more than difficult. Keep that love in your heart. Your babies need it.
ReplyDeleteThinking of you, MissConception (Alissa)
Here via JustHeather on Mel's Lost and Found Connections Abound. I am so sorry to read about the news you received. Having been through a similar experience in 2008, I know all too well how devastating that can be.
ReplyDeleteI am not sure what resources you have been given or looked into, but I highly recommend perinatalhspice.org and two books, one called The Gift of Time by Amy Kubelbeck and Dr. Deborah Davis and another by Amy Kubelbeck called Waiting with Gabriel. I also wrote a lot about my family's journey with our daughter Molly in 2008 on my blog and a CarePage called BabyBenson2008.
Molly had a very rare and severe combination of congenital heart defects, as well as Left Atrial Isomerism. Sadly, she did not survive long after her birth on April 17, 2008, just shy of 30 weeks gestation. Please know that you and your family will be in my thoughts and prayers and please feel free to reach out to me if I can be of support or a resource for you.
Finally, if you go on Caring Bridge and/or CarePages and search for congenital heart defects you can find a lot of other "heart families" to connect with. We found that really helpful when I was carrying Molly. Sorry, I keep thinking of more things... I have a resource page on my blog, that may have some helpful links for you: http://bereavedandblessed.com/resources-links/congenital-heart-defects/ and this post includes a letter that I wrote to myself after Molly's death, but that I would have liked to receive the day of the diagnosis: http://bereavedandblessed.com/2009/04/remembering-molly-1-year-happy-birthday/
You can and will get through this, one day, one hour, one step at a time. (((HUGS))) to you.
Kate
ReplyDeleteI am just catching up on blogs and am just in tears reading about your little one. I am so sorry to hear about Baby B heart problems. I am praying for you and your little ones and am just so sorry at how unfair life is. It is heartbreaking to read this and I will be praying and praying for a miracle for little twinnie B. Thinking of you, K, J and Molly xxxxx
Stumbled on to your blog while hopping through blogrolls today. This is most definitely a challenging place to be. Just want you to know you are in my thoughts and prayers along with your babies....sending hugs to you!
ReplyDeleteI'm so so sorry for your devastating news. I feel your pain and confusion, I know those questions too well. Our baby boy was diagnosed with HLHS at 20weeks of pregnancy. It's a heartbreaking and soul-crushing place to be at. Sending you so much strength to wade through all that needs to be considered for you, your family and your little one.
ReplyDeleteI'm not sure what your options are there and since you are carrying twins, but you are probably in the midst of finding out.. in the end, you do what you feel is 'best' in this horrible situation. Nothing is right or wrong. You are asking the right questions, and as hard as it is, keep asking them and talk about it with the people you trust.
I wrote about our journey very openly but have blogs password protected, please don't hesitate to email me and I let you know the password.
Sending hugs, somehow you will get through this, one step at a time.
I am so sorry to hear this news. Sending you strength, love and light.
ReplyDeleteI'm here from marwil's blog. I'm so sorry about this news and the decisions you and your husband will have to make because of it. I hope it helps you to know that there are total strangers out there thinking of you and supporting you, whatever you choose for your family. Sending hugs.
ReplyDeleteI am so sorry to hear this news!!! Thinking about you all.
ReplyDelete