Pregnant after 35
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Freaking Out...

Went to the children's hospital today for our fetal echo only to be told that our baby has hypoplastic left heart syndrome.  The good news is that we found it early and can now have a plan for when the baby is born, necessary surgeries, long term care, etc.  The bad news is that I am so scared and know that there is nothing I can do about it. I'm not going to be able to deliver in our home town, the baby is going to need to be transported to NeoNatal ICU immediately and I have a lifetime of worry ahead of me.  I'm sad and trying to be optimistic  but am a complete wreck.

Re: Freaking Out...

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    I am so, so sorry!  I can't imagine how you feel but I am wishing and praying nothing but the best for you and your little one!  Thank goodness you discovered this early enough to plan for the best care for your baby from the minute he/she arrives. 
    Eleanor Paige, born 3/27/08 Noah Christopher, born 10/2/10 Image and video hosting by TinyPic Image and video hosting by TinyPic Image and video hosting by TinyPic Lilypie Fourth Birthday tickers Lilypie First Birthday tickers
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    First Hello! So nice to meet someone from Merced. I grew up in LeGrand and visit Merced often.

    I am so sorry to hear about your situation. Big Hugs!

    Lilypie Maternity tickers"> Lilypie Second Birthday tickers
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    I'm so sorry that they found a heart issue. It sounds like your doctors are planning and keeping you informed of everything and there is a good team ready to take excellent care of your baby.
    I am a Wonder-Mom!
    DD#1 - January 2008
    DD#2 - September 2010
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    It is definitely understandable for you to be a complete wreck, since I didn't know what that was I looked it up. To be prepared is the best way to feel more in control, I hope you are able to find a wonderful hospital and doctor that has experience with this condition, when you are ready to deliver I hope all will be perfectly well with your LO. I said a little prayer for you both and keep up positive thoughts.
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    I am so sorry.  My T&P are with you, your family and your LO.
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    I'm so sorry you are dealing with this; I can only imagine how upset and scared you must feel.  I will pray for your baby and your peace of mind - it sounds like there is a good plan in motion for your baby to receive the best care on delivery. 
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    So sorry to hear about the baby but at least you found out early and the team of docs will be there for you, I cannot imagine what you are going through and I hope everything is ok
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    My DH's best friend's daughter has HLHS.  She will be turning 5 in May and is a beautiful, intelligent girl.  Her mom delivered in Boston and I "think" she had her first surgery within days of her birth.  She is doing wonderful-actually, today was the American Heart Association's Heartwalk where she and other heart friends are supported by family and friends.  Her mom also created a Carepage and was able to keep family and friends informed of her little girl.  I hope you can find some local moms or a message board of others that have children with HLHS so you can get the support and information you need. 
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    As the parent of a little girl who was born with a heart abnormality - I can certainly understand your fears.  I can tell you that it is great that they found out so early.  It is amazing what they can do in utero to help keep your baby healthy and monitored.  With my daughter, they unfortunately didn't catch her cardiac issue until she was in congestive heart failure.  They gave us a 50% chance that she would survive.  Today she is just our little miracle!  She is bright and active and people are amazed that this is the same little baby.

    I know it's scary and nothing is the way you dreamed or planned it would be.  My daughter was moved to another hosptial in the cardiac intensive care unit the day after she was born.  I was so sad that I couldn't hold her or be with her all the time (I had a c-section and couldn't be with her for two days).  Even though it was an abnormal situation, what I can tell you is that my memories of that time are so positive, despite everything, because of the amazing staff at the Children's Hospital where she was (it was in Boston).  I can't explain how supportive they are, and they know what you are going through.  It helps so much. 

    I don't know what your baby's condition will entail treatment wise, but I can tell you that the bond and love you will feel for this little person will amaze you and their strength and resiliency is amazing. I have so much respect for my daughter and the things she has fought through. I really believe it made her stronger.

    Even though there will be ongoing check ups and tests etc. you will be amazed at how much you will learn, and the confidence facing this will give you.  Science is amazing and the technology is there to help your baby - you will develop relationships with all of the baby's providers and after a while it won't seem strange to you and you will look forward to seeing them and seeing the baby's progress.

    I wish you all the best!  Try to take one day at a time and be grateful for any positives there are.  Try not to think of the long term issues and just focus on what is happening now, and the little joys you can take from whatever situation you are in.  In our case, on the tough days, I would be happy that I was able to pump milk to be tube fed to my daughter, or that I could touch her or (eventually) hold her.  I tried not to think about "what if" or what would come next, and it really helped us to all stay calm and focused.  You will be in my thoughts.  Good luck!

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