Wednesday, September 30, 2015

The unthinkable.

In early September, at our 25 weeks gestation sonogram, Sean and I heard the news no parents should ever have to hear. "There's something wrong with your baby's heart." We weren't really told anything in addition to that. Instead we were told that an appointment would be made with a pediatric cardiologist to diagnose and investigate the issue with our baby's heart. After preforming a fetal echocardiogram, the pediatric cardiologist subsequently referred us to Vanderbilt for more specialized care and confirmation of the diagnosis. The fetal cardiologist at Vanderbilt confirmed what the doctor her in town suspected. Pulmonary Atresia with a Ventricular Septal Defect. If that wasn't bad enough we were told that she may also have other birth defects including an upper airway obstruction or laryngeal atresia, and/or a chromosomal disorder.

In a couple weeks we will return to Vanderbilt to have an MRI. The MRI will investigate the potential  airway obstruction. If there is an obstruction, things will become much more complicated for our little one. The pediatric surgeon stated that babies with either of these disorders have a hard time, and the combination doesn't bode well in terms of prognosis. If she does have the obstruction Sean and I will have to relocate to Nashville as we will not be able to risk going into labor away from Vanderbilt. She will have be delivered via what's called an EXIT procedure- meaning she will have to have a surgical intervention to establish an airway while she is still connected to her placenta. Her heart defect will only complicate this procedure.

We won't know until she is born whether or not she has a chromosomal disorder to top it all off. The chromosomal disorder she is at risk for is call DiGeorge Syndrome. It was described to us as spectrum disorder that has a wide range of severity. Most of the time it affect mental and immune function. The last thing our little Avie needs is to be immunocompromised.

All of this has been quite difficult for Sean and I to process and handle. There are still so many unknowns. We don't know we'll get to bring our baby home, and if we do get to bring her home if we'll ever hear her sweet voice or laughter. She has the potential to be quite ill if she does make it through. However if she only has the congenital heart defect than her prognosis is positive. She will face have multiple open heart surgeries (the first couple being in her first 6 months of life) in her life but she should grow to be a happy, relatively healthy child with the appropriate interventions and care.

Please keep our sweet Avelyn Marie in your thoughts and prayers. She needs all the support she can get.

I will do my best to update this blog as time progresses and we learn more. I want to keep all friends and family who love us updated, but have found it taxing to contact everyone individually.

8 comments:

  1. Hang in there my beautiful baby girl! I love you.
    Sean too
    Dad

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    1. You're the best daddio. I love you lots and am sure little Avelyn will be just as crazy about her papa!

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  2. Hey Sean and sommer,

    My heart hurts to hear your news, I just wanted to tell you my story. When aiden was born in 2006 he was diagnosed with meconium illus, we went into an 8 hrs surgery at 27 hrs old with a 50/50 prognosis, also tentatively with cystic firbrosis, I was a mess! He made it through surgery, and ended with a negative cf test! Now he is healthy and amazing! When I was pregnant with eben from the beginning they diagnosed him with the same thing as aiden, thus more surgery, as well as downs syndrome. My whole pregnancy I was thinking how was it going to handle this again! When he was born, there was no downs syndrome or meconium ilius. There is hope, even though they have a definite on the heart defect there is always hope that it won't be as bad as they prepare you for! Have faith in your baby girl! Good luck,

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    1. Thanks for the positive thoughts Jessie. I am so grateful your Aiden and Eben are happy and healthy. We are surely hoping for the best case scenario too.
      Somer

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  3. This comment has been removed by the author.

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    1. Sorry, it needed editing. But inserted below.

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  4. Hi Sommer and Sean! This is Deacon Carl & Kathy Crump. I am the deacon at St. John's Episcopal, where your Father and Mother attend. They have asked us and we are praying for Avelya. Kathy and I are members of the Order of St. Luke the Physician, a healing ministry. While I serve on the Altar on Sundays' Kathy provides healing prayer and anointing during communion. What we want to do, and have talked Shelly and Allen, and we will contact all the people we know, at all the churches we have served at, and asking them to do the same, hoping to get prayer warriors throughout God's green earth praying for Avelya and yourselves. When we know the date and times of the procedure/delivery we will start praying thru for Avelya. Praying thru versus praying for, is that we will continue to pray from the beginning of the delivery until the end. Through our prayers we will build a wall of prayer around the delivery room, not allowing any evil spirits to interfere with the work of the Doctors and the Lord Jesus. We pray in the Name of Jesus Christ that Alevya will be healed before delivery, that all her internal organs will be completely formed, and that there will be no deficiencies in any of her bodily systems, and will be born a happy, healthy child, with the beauty of her mother, and long life. As new tests are scheduled we will pray thru the testing and providing a wall of prayer around your child. We will start today sending the emails and texts to all we know, praying for them to do the same, and will alert them to the coming tests.May God Bless you and Sean, give you strength and hope in the Lord Jesus Christ and his healing.

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    1. Thank you Mr. Crump. We truly appreciate your efforts and positive thoughts for our little Avelyn. We go for an MRI on the 13th of October from 9-11 am central time. We won't know the results until the next day sometime. I will post those here as soon as I am able and also inform Allen and Shelley soon afterward.
      Best wishes and God Bless.
      Somer

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