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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Friday, August 28, 2009

The Rarest of the Rare


Today is Friday, August 28 and Brian & I met with Anna Grace’s Pediatric Cardiologist for the first time today. His name is Dr. Raunikar and he practices here in Greenville. Our appointment today was for Anna Grace’s first echocardiogram to further diagnose her heart condition and to start the ball rolling for preparing a plan of action for her birth. We felt very fortunate to be able to see him so quickly because as most of you know we are only temporarily approved for Medicaid for 30 days. There are no guarantees that after 30 days we will have maternity coverage and so as many doctors’ appointments that we can fit in during this 30 day period is a blessing.

Dr. Raunikar is a man probably in his mid-forties with kind eyes and a quick smile. His bedside manner was impeccable and I felt at ease with him from that start. He also gave us an indication at the start of the meeting that he was a Christian as he quoted Psalm 139 to us as he began Anna Grace’s echocardiogram.

So, Dr. Raunikar proceeded to look at Anna Grace’s heart and surprisingly she seemed to want to cooperate today, which is certainly something to be thankful for. The doctor talked to us as he went through the examination of her heart and told us what he was looking at which we too were able to see on a large monitor they had mounted to the wall. He was glad to answer questions and he was very thorough. After about 30 minutes of examining her heart I was able to get dressed and we met him in another room to talk about what he found in less technical terms.

So basically he confirmed her diagnosis as Hypoplastic Right Heart Syndrome – which we already knew, but he explained in greater detail about Anna Grace’s specific heart defects. He explained it to us like this, which made a lot of sense to me. He said that to say someone has a learning disability would be a correct statement, but to say that someone had dyslexia would be a more correct statement. It is a more specific diagnosis. So, saying that Anna Grace has Hypoplastic Right Heart Syndrome is correct, but it is a broad diagnosis. Specifically, Anna Grace’s heart appears to have the following problems: (now this is about to get technical so some of you will find this helpful & some of you will want to skip right over it which I totally understand). The biggest issues which he was able to identify today are that she has: Tricuspid atresia with possible transposition of the great arteries as well as an arterial septal defect. Whew, it’s a mouthful isn’t it????? If you want to read more about it you can go to this page & it will explain in greater detail about these problems: http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/tricuspid.htm

Dr. Raunikar then proceeded to tell us that this was the “rarest of the rare” for heart defects. So, the plan of action right now is that Brian & I will be traveling to Charleston to meet with a team of pediatric cardiology surgeons to get a second opinion on Dr. Raunikar’s diagnosis as well as come up with a more specific plan of action for her actual surgeries. I will also meet with a Maternal-Fetal Specialist in Charleston who will actually be doing my c-section. We are praying that we can get these visits scheduled before our 30 day Medicaid window expires so we sincerely hope that you will join us in praying that God will work these details out for us.

Dr. Raunikar said that the most probable plan of treatment for Anna Grace will be that she will be born in Charleston & upon her birth will have further testing done to re-confirm the findings from in the womb. Then depending on what they find upon her birth they will do her first surgery anywhere from a couple of days old to a few weeks old. If she gets through that surgery then at about 4 months she will have a heart cath done to be sure that her heart can sustain the second surgery (called the bi-direction glenn) which will be performed at about 6 months of age. If she makes it through that surgery then when she reaches 30 pounds she will have another heart cath to be sure her heart is strong enough to sustain the 3rd surgery (called a fontaine completion). These three surgeries are all open-heart surgeries and are pretty serious business for anyone, let alone a tiny baby. So…. Dr. Raunikar said that it really is critical that I not deliver her until at least 39 weeks and that she be delivered in Charleston. Also, the bigger she is the better. So – I am praying that I can carry her to 39 weeks & that she will be a BIG, BIG, CHUBBY baby! Zachary was 8 ½ pounds at 39 weeks so I’m praying that Anna Grace will match her big brother pound for pound!

We ended our visit with Dr. Raunikar by sharing our Faith with him and he in turn shared with us that he is also a Christian. As a matter of fact, he said that when he was in college he debated about being a Youth Minister or a Cardiologist. Obviously, God chose for him to go into medicine, but he is actively involved ministry in a closed situation so I can’t go into more detail about that other than to say that he is actively serving our Lord. What a blessing to have him as Anna Grace’s doctor! We prayed together at the conclusion of our meeting and it was truly a sweet time.

So, his office will be contacting us next week with the date of the appointments in Charleston. Brian & I will have to travel down there for a whirlwind day of doctor visits. Zachary of course will not be able to travel with us since this again is not a toddler friendly trip. We will post more info about those appointments once we know more.

So, I know this has turned out to be a VERY long post. There is still a lot to say, but I will leave it for another day that is not so packed full of technical lingo.

Please continue to pray for God to provide the financial resources we need to cover these medical visits – either through Medicaid or another way.

Please pray for healing of Anna Grace’s heart.

Please pray for wisdom for the doctors we will be meeting with in Charleston.

Please pray for Zachary as his little life is about to change in so many ways – that God will give him the maturity he needs to cope – and of course for loving caretakers to be there for him in our absence.

Please pray that God will CONTINUE to give us the strength to make it through each day & that we are faithful to glorify HIM in our words and actions during this time of great trial. (You know we CAN NOT do this without JESUS sustaining us)!!!

Here are some things I am thankful for today….

That Dr. Raunikar is a Christian. That Anna Grace cooperated during her echocardiogram today. That today’s doctor visit was covered by Medicaid. That we have wonderful friends & family who are faithful to continue to pray for our family. That we have found a home for our kitty Jedi (still looking for a home for our other kitty Nova). That we had a wonderful family vacation in Florida.

4 comments:

Lisa said...

I've been following your story on Twitter. I have two boys with HRHS. My oldest son was born nearly 17 years ago with Tricuspid atresia, transposition, atrial septal defect, ventricular septal defect, and a coarctation of the aorta. We did not have a good outcome. Clint passed away at 9 weeks due to surgery complications. I hesitate to post because of the negativity. However, it was many years ago and medical techonology has changed in amazing ways since then. I know first hand since my 3 yr old also has HRHS, but not the tricuspid atresia version.
I urge you to join the support group at www.hypoplasticrighthearts.org. There are many TA/TGA kids there!

God bless as you wait for Grace's arrival. If you want to talk, please contact me through my blog or twitter (LisalynSchaffer).
Praying for you all in TN~

BrianB. said...

Lisa,

We really appreciate your prayers and feel blessed you are following our story.

We trust whatever plans God has for Anna Grace.

We will be checking into joining the support group at HypoplasticRightHearts.Org

May God bless you for your faithfulness to pray for us.

Brian and Tina

BrianB. said...
This comment has been removed by the author.
Kimberly said...

I figured I would leave a note here tonight, instead of just e-mailing you, Tina. :)

I love you dearly...therefore, I already love little Anna Grace dearly. Know that my girls and I are praying for her in the morning on the way to school...and I am praying for all of you.

I love reading in this post how you and Brian are able to see God's hand moving on your behalf. I love how you live a life that looks for His hand, even in the midst of many questions and difficult times.

Love you,
K