Tuesday, July 2, 2013

Our Baby

This is a difficult post to write. 

Earlier this year we learned that we are expecting our first baby in October.  The excitement was overwhelming.  The news came after several years of trying unsuccessfully to conceive due to my having endometriosis.  When we found out we were so happy and blessed to finally start our journey of parenthood.  Little did we know that the struggle of infertility would be replaced with an even greater one.

Just as a little background, I am currently 23 weeks along and so far the pregnancy has gone very well.  I had minimal nausea and have felt great for the most part.  At the outset of the pregnancy I was diagnosed with  slight hypothyroidism but the doctor was not too concerned.  I was put on a low dose of Eutirox and that seemed to fix things.  Nothing was out of the ordinary and our busy schedules continued as normal with the addition of monthly OB appointments in Rome.  A few weeks ago I started to be able to feel the baby kicking.  It is such a weird and awesome feeling.  Ryan has even been able to feel a few of the stronger kicks.  We also found out that we are a having a girl!

Last week we had our morphological ultrasound and the doctor spotted a focus, or bright spot, on the baby's heart.  He told us that it was probably nothing to worry about but that we should have a fetal echocardiogram just to make sure.  The first echocardiogram was yesterday, Monday.  The baby was being very uncooperative and the doctors were not able to get a good view of the heart.  They were able to confirm the presence of a focus in the left ventricle but they could not see the aortic valve very well.  It was the doctor's recommendation that we see a pediatric cardiac specialist today, Tuesday.  It was the pediatric cardiac specialist who told us today that something is seriously wrong with our baby's heart.  While I do not pretend to understand the full diagnosis (trying to translate medical Italian is not easy), the information that we received was that there is something seriously wrong with the baby's aorta.  This has caused a number of problems including putting a great amount of stress on the left ventricle.  This is a problem that will only continue to worsen as the pregnancy progresses.  There is a chance that the baby's heart will fail before it reaches full term.  If the baby does reach full term and is delivered successfully, she will require immediate surgery.  The list of possible complications and genetic birth defects is long.

At this point we are just taking our time to process what we have been told and to pray.  We will begin to make decisions regarding medical care in a the next day or two.  We will try to keep you all updated on the baby's status and our plans as the information becomes available.  Right now we ask that you please keep us in your prayers.  We are especially asking for the intercession of Blessed John Paul II who is due to be canonized in October around when the baby is due.

Thank you to all of you who have already contacted us with words of encouragement.  We are obviously struggling right now and your love and support mean so much to us.

8 comments:

  1. Praying for you. Saw your post via facebook of a friend, and will pray deeply. We too, are expecting a girl soon.

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  2. I saw your post via a Facebook friend as well- I'm expecting a baby girl in September and also struggled to conceive, so this hit especially close to home. I'll be praying for all 3 members of your little lady and you both!

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  3. A friend passed along your story, and my heart goes out to you. My husband and I lost our first child, a boy, last June at 24 weeks, after we learned he had Hypoplastic Left Heart Syndrome. I will be sending all the good energy to you and your baby. If you ever need support from another kind of heart mom, please know I'm here. I've blogged extensively about loving and losing Lorenzo at www.jennifermassoni.com

    Much love to you,
    Jenn <3

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  4. I saw your post via a friend (Hadro et al) on facebook, and I simply had to drop by. Our #3 is a Cardiac Kid, (joeytramma.blogspot.com) and we've been through a lot with him. He's gone from VERY sick with 3 heart defects (including coarctation of the aorta and aortic stenosis) with LOTS of complications... to a happy, crazy, active, wonderful 3 year old. Please know that I will be praying for your family in a very special way - cardiac kids and their families have a very special place in my heart and my prayers!!! If you ever have any questions or need support or interpretation (my husband speaks italian and I am a nurse) PLEASE do not hesitate. kateandpat @ gmail . com

    Most importantly, remember that your Baby Girl is wonderfully and PERFECTLY made! That God loves her even more than you do, and His Love is infinite and perfect. You will hear lots of the word "defect" and do not be offended (it's just the medical term) and do not be discouraged. She is made in His Love and His Image and whatever her life holds, it is through His grace that you will all touch lives sHaring His Love.

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  5. I have learned of your situation through my UD connections, and I just want you to know that I am praying for you as is my online (UD) prayer group. This morning, I will call my sister's convent in Rockford, IL - then you will have a group of cloistered Poor Clares praying for you and your baby. My husband and I had our first daughter at the end of our first year as Rome Assistants; no health complications, but I was in the hospital only about 8 minutes before she was born (we had to get all the way to Salvator Mundi hospital in the Center of town...)! Anyway, my heart goes out to you. If you need any help translating that medical Italian - or need any other kind of support I could offer, please email me (lmobus@vermontel.net) or friend me on Facebook (Lisa Fougerousse Mobus). Actually, I could put you in touch with my sister as well, another UD grad; her 7th child (of 8) was born with a heart defect and had to have 3 surgeries before the age of 2. Many blessings to you, Ellen and Ryan, and to your precious baby girl.

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  6. Ellen, I am so sorry for your diagnosis of your precious little girl. I also received an adverse prenatal diagnosis that included among several things a heart defect. Just the news of a diagnosis like this is such a loss. A loss of a carefree pregnancy. I know the feeling of having the joy of your pregnancy lost with just one doctors appointment. We had a baby girl who surprised everyone and made it to full term. After much prayer and tears we decided to embrace every moment of our daughter's life, kicks, hiccups, and flips. She was with us for 90 minutes after her birth. Moments that I would not trade for anything...even the fear and pain we experienced. I have started a ministry in Virginia named Embracing Grace that is affiliated with Richmond/Arlington Dioceses. We have many resources to share with you. The challenge of parenting a fragile baby comes with many graces and is such a witness of unconditional love. also know that such a challenge can only be met with prayer and community. Our family has become close to your brother, Danny. He is best friends with my son and I consider him one of our own!! We feel honored to know your family. Please know that all of you are in our prayers. We are here to support you as you cherish the life that has been given in this baby girl. embracinggracepeer@gmail.com.

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  7. Just wanted to continue to let you know that my husband and I are praying for y'all.

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  8. You have our prayers! We are friends of the Jones family and UDers as well. After many many years of struggling with infertility (also due to endometriosis), I know the heartache you must feel from that. We will pray for this new cross you are bearing and for your sweet Caroline!!

    With love and prayers -

    Andrew, Emily, and Anthony Glicksman

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