God alone is Sovereign

1 Chronicles 29:11

Yours, O LORD, is the greatness and the power and the glory and the victory and the majesty, for all that is in the heavens and in the earth is yours. Yours is the kingdom, O LORD, and you are exalted as head above all.

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Tuesday, August 18, 2009

Hypoplastic Right Heart Syndrome


Today was a huge day in the life of the Bentley family. We saw a specialist this afternoon who diagnosed our little girl with Hypoplastic Right Heart Syndrome. Basically her right ventricle as well as her pulmonary artery are underdeveloped and can not support her once she is out of the womb. Obviously we are still in a bit of shock to the news and are trying to process everything that the doctor told us….

Our baby girl will be born in Charleston, SC at MUSC.


Brian & I will begin meeting with a Pediatric Cardiologist in Charleston as well as a pediatric surgeon in Charleston in the next couple of weeks for more extensive testing and to come up with a plan for her upon her arrival.


Our little girl will most likely be born by c-section.


Upon her birth, she will immediately be taken to the Pediatric Intensive Care Unit where they will start her on a drug that will keep a valve open in her heart that normally closes once babies are born. Keeping the valve open will allow them to do necessary testing on her heart before surgery.


She will most likely have her first open heart surgery when she is 2 or 3 days old.


We will remain in Charleston with her until she is doing well enough to be released home. For some children it can be as soon as a month for some children it can be many months and of course some children do not survive the surgery.


If she is doing well then they will do another open heart surgery on her when she is about 6 months old…a possible third open heart surgery might be needed between the ages of 18 months to 3 years.

We will have more information as to her specific condition and game plan after meeting with the specialist from Charleston in the coming weeks. We’ll be sure to post that as soon as we have more details. Her estimated due date is January 2, 2010 – but with the c-section they will probably take her a week early so my guess is that she will be born the last week in December. I’ll know more after meeting with the Pediatric Cardiologist.

What are we thankful for….. the doctor told us that many of these children with heart problems have genetic disorders which can be the cause. However, our doctor did not think she had a genetic disorder at all as everything else about her appeared to be normal. He said the problem seemed to be isolated only to her heart. While her heart condition is very serious we are thankful that the problem appears to be isolated there.

What we need prayer for…… we do not have insurance to cover any expenses prior to the babies birth and are going to be applying for financial assistance. I am hoping to have the applications completed & turned in this week. The doctor did tell us that we needed to do whatever we could to get Medicaid. So, certainly if you could be praying for God to provide us the financial means necessary to treat our daughter that would certainly be a huge blessing to us.

So…. Brian, Zachary and I (along with Brian’s Mom who has volunteered to be our Nanny for the week) are going to be traveling to Florida on Friday for a week of vacation. We have had this vacation planned for some time and are looking forward to a quiet week at the beach where we can pray as well as enjoy each other’s company before things start to get crazy for our family. We are hoping to be “unplugged” while we are down there so probably won’t be making any updates until we return.

If you feel led to….. we have two cats that are going to need a new home pretty quickly. We love them, but our priorities have truly shifted and we are not going to be able to keep them. If you can provide them a good home or know of someone who can please let us know. We love them and want them to go somewhere they will be loved & cared for since they have been a part of our family for so long. We just won’t be able to financially care for them or even physically care for them in the coming months so we need to make other arrangements for them ASAP.

Thank you… for continuing to pray for us – specifically for our little girl. Your encouraging e-mails and phone calls truly mean so much to us. We have broken hearts over our little girl’s broken heart and we continue to pray for her complete healing. Our God is the SAME God He was before we went to the doctor. Whatever path he has laid for us we will walk trusting HIM.

James 1:2-4 “Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.”

James 1:12 “Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love Him.”

1 Peter 4:12 “Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you. But rejoice insofar as you share Christ’s sufferings, that you may also rejoice and be glad when His glory is revealed.”

1 Peter 4:16 “Yet if anyone suffers as a Christian, let him not be ashamed, but let him glorify God in that name.”

Matthew 11:28-29 Jesus said, “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls”

Romans 15:13 “May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit”


P.S. – I am happy to report that as I am typing this update our little girl is excitedly kicking away in my womb and turning somersaults (one of her favorite past-times). She is a most active little girl and seems to be thriving in my womb. Also, we are going to be working on giving our little girl a name while we are on vacation so hopefully when we get back from Florida we can share that with you and you can start praying for her by name J

God Alone is Sovereign

1 Chronicles 29:11

“Yours, O LORD, is the greatness and the power and the glory and the victory and the majesty, for all that is in the heavens and in the earth is Yours. Yours is the kingdom, O LORD, and You are exalted as head above it all."

10 comments:

Jennifer said...

She is SO Beautiful!!!! I have no words for how passionately I will be praying for you all!!!! Jermiah 29:11--- He has a HOPE and a FUTURE for your sweet girl!!!
LOVE YOU guys!
Jenn

.dead.man.walking. said...

I got your blog url from your twitter. i got your twitter url from Geordee's twitter. Geordee's and Cecily's son was born with HLHS two months back and is progressing quite well.

We will be keeping your family in our prayers. Our Lord is faithful. May God shower you and your family with His peace that passes all understanding.

With warm Christian love and regards, especially for the miracle of God that will be born today.

Johns and Suja (India)

seangosnell said...

Praying for you all. And working on spreading the word to get more folks praying and crying out to our God for you. Love you folks. Sean Gosnell

.dead.man.walking. said...

oops! i just checked that she will be born in Jan. That leaves us more time to pray for her before she is born. :))

God is faithful.

Susan said...

I recently came across your blog and have been reading along. I thought I would leave my first comment. I don't know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.


Susan

http://onlinemariogames.net

Lisa said...

Hi,

I found you through Twitter. I am a mom of 2 HRHS boys. My youngest son is 3 1/2 and has HRHS. He was born with pulmonary stenosis and several other heart defects. We were told to terminate the day we found out!
We were also told that he would need a shunt surgery right after birth. However, he was able to skip that surgery and go home on day 4. He just had the second surgery (the glenn) this year at 3 yrs old.

There is a great support group at www.hypoplasticrighthearts.org

Praying for your family!
Lisa @
All That and a Box Rocks

valeria said...

Hello,
My son to be has also been diagnosed with HLHS last Friday. I can truly understand what you and your family are going through. Our son will be born on Dec 11th, but also labour might be induced a week before this. I haven´t been told about the possibility of the C-section, I will check it out.
I just wanted to let you know that you are not alone, I am also a very faithful person and we are praying very hard to have the strength to remain joyful even after the news, during our last pregnancy trimester, for our son. I will be moving to Boston to deliver so thata our little one can be intervened there soon after birth.
All the best to you and your family, we will also keep you all in our prayers.
Valeria

manu said...

Hypoplastic Right Heart Syndrome (HRHS):Causes,Symptoms and Treatment

Hypoplastic Right Heart Syndrome (HRHS) is a condition that is even more rare than Hypoplastic Left Heart Syndrome (HLHS). HRHS refers to the underdevelopment of the right side structures of the heart, which means that the chambers, valves and related blood vessels on the right side of the heart are malformed.

http://heart-consult.com/articles/149/what-you-should-know-about-hypoplastic-right-heart-syndrome-hrhs

belindA said...

Hi..I came across ur blog cause i can't log into my HRHS account but i have an almost 11yr old HRHS, w/ aortic Insufficiency and pulmonary atresia, post fontan..I dindt find out till after birth, dont worry, God is good and has both our childrens heart in His hands..He is the Miracle maker! Blessings:)

Anonymous said...

I am the uncle of Lorenzo Morales who was born with this as well and he is 5 yrs old and is doing great just like your precious baby will to