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  #1  
December 21st, 2007, 07:41 PM
Chang217's Avatar Veteran
Join Date: Jul 2007
Posts: 181
I would like to joing you ladies on the high risk board....

DH and I learned during our 20 week ultrasound that our baby girl has a non-cancerous liquid filled mass on her left lung that needs to be removed. It is called a Congenital Cystic Adnomatoid Malformation or CCAM and it is a space occupying lesion. Basically, it’s like she has a water balloon in her chest that displaces her heart and does not allow for anything else to develop fully. The CCAM was growing so rapidly that we needed to act quickly. We flew to the Children’s Hospital of Philadelphia (CHOP) where they did a high resolution ultrasound, MRI and Echocardiogram. The next day, the doctors drained the mass and the liquid started to fill back up immediately. Within a few more days, I was in the operating room where they placed a shunt in her lung mass that continuously drains the CCAM. It was amazing that they could work through me to do this procedure on our unborn daughter. We are now back at home in Florida and we are doing weekly ultrasounds to monitor the CCAM and make sure the shunt is draining. We have been praying so praying HARD for good news each week—and the shunt has been draining and the mass is MUCH smaller no longer displacing our baby’s heart. Just when we started celebrating our weekly visit to the hospital, we were hit with another rare condition. Last week, I was diagnosed with Obstetric Cholestasis (OC) which is a specific liver condition in which the normal flow of bile is impaired in the mother’s body resulting severe itching and other more severe risks to the baby (i.e., infant stillbirth, premature labor, fetal distress, and hemorrhaging in both mother and child). They did an amniocentesis which came back clear so we are grateful that this is not a chromosomal issue. In just a few weeks (at 33 weeks) I will be headed back to CHOP where I will stay until they deliver my daughter at 36 weeks. They will need to tend to her shunt immediately and may or may not need to perform surgery immediately (depending on how she is breathing). We have faith that that God is fighting for our daughter.
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  #2  
December 22nd, 2007, 08:10 AM
Cindermella's Avatar Freakin Know it all
Join Date: Aug 2005
Location: Canada
Posts: 13,606
Wow that is quite the ordeal. You are in my thoughts and prayers.

You seem to be holding up quite nicely tho right?

Welcome to the high risk board
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  #3  
December 22nd, 2007, 03:16 PM
Chang217's Avatar Veteran
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Yes, at first I was devastated but now I am in "mommy fight mode". I figure since she has been so strong-- I certainly need to be. Thanks for your thoughts and prayers.
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  #4  
December 22nd, 2007, 03:52 PM
sle4life's Avatar Veteran
Join Date: Aug 2007
Location: North Carolina
Posts: 153
Many blessings to you as you travel far from home. There isn't anywhere closer that can help you with your condition? Seems extreme to have to be that far away from friends and family. Hang in there and keep praying. God is still in the business of working miracles!
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  #5  
December 22nd, 2007, 04:27 PM
Cindermella's Avatar Freakin Know it all
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sometimes it is worth going to extremes

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  #6  
December 22nd, 2007, 08:27 PM
Chang217's Avatar Veteran
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I would absolutely LOVE to stay and deliver locally but the high risk hospital in Orlando only handles about 6 of these lung lesions a year and none have been the type of lung mass that my daughter has (liquid filled). Also, they have never cared for a fetal lung shunt. When I was being treated here...the perinatalogists were just watching the mass expand in her chest (they were baffled) and the doctors here told me that a hospital like the CHOP would only take me if my daughter was in heart failure. Luckily something made me just call CHOP on my own. They asked for my records and said with the size the mass had grown to, I needed to be up there the next day. By the time I got there, liquid was forming in her chest. At the CHOP they said if I did not get there when I did she most likely would not have made it. The CHOP and the Cincinnati Fetal Center are the only hospitals that specialize in these lung lesions. When I was at the CHOP I lived in the Ronald McDonald house and there were families there from Puerto Rico, Iraq, Iowa, Georgia and two of us from Florida. People travel from all over because the diagnosis is so rare that most OBs have never seen a CCAM (lung lesion). I am so nervous to move back into the Ronald McDonald house in less than three weeks. I would rather be home hands down but I need to give my daughter the best care I can. Sorry I know that was a long answer. Smile!!!
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  #7  
December 23rd, 2007, 02:46 PM
Astrid's Avatar Platinum Supermommy
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Hi sweetie! I am so sorry you have had to go through so much in such a short amount of time. I am glad to see everything went well & the shunt is working. THere are many sacrifices that we make as mothers. I am currently on bed rest for incompetent cervix that is also funneling a bit. I'll do what ever it takes as you will. My prayers are w/ you.
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  #8  
December 24th, 2007, 09:18 PM
Chang217's Avatar Veteran
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Quote:
Hi sweetie! I am so sorry you have had to go through so much in such a short amount of time. I am glad to see everything went well & the shunt is working. THere are many sacrifices that we make as mothers. I am currently on bed rest for incompetent cervix that is also funneling a bit. I'll do what ever it takes as you will. My prayers are w/ you.[/b]

You are right! We will do anything for these little ones. I read your story and see that you will be on bed rest for awhile. I hope you find alot to do to pass the time. I will keep checking on you. Merry Christmas!
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  #9  
December 25th, 2007, 08:57 AM
Super Mommy
Join Date: Dec 2007
Posts: 577
I'll be praying for you and your sweet precious little child within you!
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  #10  
December 26th, 2007, 07:01 AM
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Hi, welcome to the high risk board... Sounds like you are going through quite a scary time, but I do know that CHOP is an amazing hospital (here in MD we transfer all our MOST critical up there if Hopkins is full). I know its not an easy process, but in the end it will all be so wonderful and such a miracle to hold your little girl in your arms. You are already SUCH a great mommy to her! Continued prayers and thoughts as you round the final bend with your pg, and heres to a very blessed and happy New Year for you and Taylor!
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  #11  
December 26th, 2007, 08:12 PM
Chang217's Avatar Veteran
Join Date: Jul 2007
Posts: 181
Thank you.... and happy New Year to all the High Risk Ladies!

I hit my 30 week marker yesterday so we are celebrating! My baby shower is next week (Yay! So excited!!) then I will be packing up and heading to PA where I will be living at the Ronald McDonald house. This may sound crazy but I will be happy to get there and get settled in. It means I only have 3.5 weeks left.

Good night everyone!
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  #12  
December 27th, 2007, 06:09 AM
Cindermella's Avatar Freakin Know it all
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Location: Canada
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Bring the laptop.
We need to know how you are doing.
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I am the "who" when you call, "Who's there?"

I put the "D" in lysdexia

Sanity is a cozy lie.



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