About Lil’ Sophie

Arrival of Sophia Ann Bagwill

Lil’ Sophie (7 months)

I am 1 today!!!

This is a blog about Lil’ Sophia Ann Bagwill. She was born full term @ 41 weeks on 1/20/2010 weighing 5lbs 4oz. The pregnancy was easy and  there were no complications to alert us of any issues.  She was delivered emergency cesarean, as her umbilical cord was wrapped several times around her legs causing her heart rate to drop. Immediately after birth a heart murmur was detected, but no one was alarmed by this, as it’s very common. Even though she was small, she was considered healthy enough to go home with us. The following day upon discharge began our journey with Lil’ Sophie as we attended our 1st Cardiac appointment to learn about her congenital heart defect. She has pulmonary valve stenosis which can/was corrected with surgery. However, we’ve learned that this was the least of her medical problems.

The 1st 3 months of life is when one by one, Lil’ Sophie’s issues started to present themselves. It has become clear now, that something happened to her early on in utero. But no one seems to know what. The Drs, Surgeons, and Specialists are on a hunt for some type of genetic syndrome to explain what’s going on inside Sophie’s little body. But it’s really like finding a needle in a haystack. They have not been able to associate her symptoms/condition with ANY other case so far, and she continues to be a mystery. Below is a running list of medical conditions that have effected our little girl. Maybe someday – a connection of these issues with a cause will give us the explanation the doctors have been looking for.

UPDATE:  On May 22, 2011 Lil’ Sophie had a liver transplant. Things are going well so far and have remedied a few of the conditions below.

Congenital Absence of the Portal Vein -Liver Transplant gave her a new Portal Vein!

Abnormal Liver heading towards liver failure -New liver from a precious donor!

Portal Hypertension – alleviated by liver transplant

Esophageal Varices – alleviated by liver transplant

Chronic Ascites – alleviated by liver transplant

Pulmonary Valve Stenosis with small distal branch arteries – Replaced Valve @ 10months, will need to redo once she’s older

Absent Gallbladder and enlarged Spleen

Failure to Thrive – Broviac Line with TPN gave her nutrients until liver transplant

Lack of Absorption of Essential Vitamins/Minerals (borderline Rickets)

Hypothyroidism

Lil’ Sophie’s been seen by 3 Geneticists. She’s tested negative for Alagille,  Noonan’s, and Costello syndrome. Dr’s have also ruled out Biliary Atresia, PFIC, and a growing list of other conditions.

Her experiences so far have included:   16+ Echocardiograms, 6+ Cardiac Caths, 1 Open Heart Surgery, 1 Liver Transplant, 5 bile duct surgeries, 4 bile duct stent change procedures, 2 MRI’s, 1 Head Ultrasound, 5 Abdominal Ultrasounds, 3 Liver Biopsies, 3 Broviac Line Surgeries, 3 Endoscopies, plus too many xrays to count and lab blood draws continuously.

She’s a miracle and each day that goes by continues to remind us of that.  Her journey is ongoing and we welcome you to check back for updates on this roller coaster ride. Thank you in advance for all your prayers and encouragement. They help us get through the hard days.

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9 Responses to “About Lil’ Sophie”

  1. Jenny – God has brought you and your sweet baby girl to my mind and prayers many times over the last few months. I’ll continue to pray. Love to yaa’ll!

  2. You are a really strong family and we pray that the drs will come up with some solutions/answers for you.Thinking of you always.

  3. Just when I think I cant be more impressed with your family you get a little better. Pray regularly for all of you

  4. Wow what a brave little girl she is!! U all must be so proud and happy that ur little girl has been so strong! Ur story has a similarity to mine! My daughter who’s 15 weeks old is also a mystery to the doctors she has them scratching there heads! She has been diagnosed with mild pulmonary valve stenosis, hyperinsulinisum, hypopatuitaryisum, Colombona of one eye they thought she had costellos but genetics doc said no! She’s had other tests done all came back normal, she also has breathing problems she’s on and off the oxygen at times and she picks up illness very easily and takes it out of her! But despite all what she’s going through she still managers to smile and amaze us everyday! We haven’t took her home yet she been in hospital since day 1!! She’s getting there and it’s great too see ur beautiful little girl doing well despite all her troubles she’s been through! take care Ang x

    • Hang in there Angela! It’s a very scary road. I’ll be praying for you guys. I’m not sure how far down the path of support you have gone. It’s definitely easier to cope when you can reach out to others who’ve walked before you. It’s especially hard for someone like you (or me) when there is no specific diagnosis. I have found groups on Facebook that I often ask questions and receive encouraging words from. For example because Sophie has a heart condition, I’m part of: Congenital Heart Defects group on FB. If my daughter is about to have a procedure I can post about it and get information from others who’ve had that same procedure done. You may have to do your own researching based on the conditions she’s presenting. If you have trouble connecting with Congenital Heart Defects, (it’s a closed group due to people making up conditions for attention – why people would do something like that is beyond me) let me know and I’ll send a note to the Admin of the group to accept your request to join.

      Best wishes on your journey. You are your girlie’s best advocate. As exhausting as it can be, try to stay on top of the medical staff and your gut instinct if something doesn’t seem right. We rely so much on the experience of medical professionals, but sometimes they are on their own journey when a child is complicated. Hopefully, your in a place that you feel comfortable with their wisdom and access to special testing. But never feel bad if you feel like you need to get a second opinion. Stay strong momma! It’s hard, hard work.

      If you ever find yourself in a situation that your in need of fundraiser items for medical expenses feel free to take a look at my Etsy shop. On occasion I do what I can to donate to other mothers who’ve been thrown into the world of medical chaos. I can’t give much, but would be happy to send a couple items to a silent auction taking place in the US. http://www.etsy.com/shop/jewel4u

      Take care,
      You’ll be in my thoughts and prayers.
      Jenny

  5. It’s so sad when little ones are so sick – it makes one feel so use/hopeless.
    Good luck on our journey and all the best to you and your family.

  6. Hi Jenny, I had no idea of the journey you have been on with your precious daughter. I noticed your last update was in March. Any updates? I have read a portion of her journey, will be back to read more.

    Please know you are all in my prayers!

    Much love,
    Mary

    • Thanks Mary! It has definitely been a journey. But we feel so incredibly blessed.
      Thank you for the prayers.
      BTW – loving your updates. I keep meaning to write. Keep them coming as they inspire me and others!
      ❤ Jenny

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