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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Wednesday, September 23, 2009

Update on Anna Grace

We have made it back home from Charleston, SC and our whirlwind day of doctor’s visits. Let me just say that it is good to be home! Zachary is in bed & I thought I would take the next few minutes to update everyone on what happened today in Charleston.

We started our day early with our first doctor visit being with Dr. S who is a Pediatric Cardiologist at MUSC. We met with a very nice nurse to start with who performed the echocardiogram of Anna Grace’s heart. Then she took the pictures for Dr. S to review while we waited. After some time we got to meet with Dr. S and he confirmed the diagnosis that Dr. R in Greenville had given us. Dr. S also elaborated on her condition which is a little more complex than Dr. R had originally thought. Dr. S said that she does have Hypoplastic Right Heart Syndrome. Specifically… Tricuspid Atresia, Transposition of the Great Vessels and the Atrial Septal Defect. He also noted that her aorta was significantly smaller than it should be and in addition one of her heart valves appears to be leaking. So… Dr. S basically said that upon her birth she will need to have her first open heart surgery at about 1 week old and that if the testing done on her heart upon her birth confirms what we see in the womb then her first open heart surgery would be the most complex type of surgery that they do, specifically a procedure called the Norwood. Dr. S said that her size is very important and so the bigger she is the better she should be able to tolerate the surgery. He also elaborated on some specific things we could expect upon her birth – basically that once she is born she will be wisked away to the Pediatric Intensive Care Unit where they will insert into her belly button lines that will feed her since she won’t be able to eat like a normal baby does. There is also a high likelihood that she will be placed on a breathing tube at this time until her surgery. He said that we would be able to touch her but that we wouldn’t be able to hold her during this time so as not to disturb the lines. He suggested that we make audio tapes or CD’s to play in a portable CD player that we could place under her incubator so that she could hear our voices when we weren’t able to be there with her. Dr. S was very informative and helpful and we prayed with him before leaving. Truly it was a very emotionally trying meeting.

From there we went swiftly to our next doctor’s appointment which was with the Maternal-Fetal Specialist – this is the doctor who will be doing the actual delivery. We were about 1 ½ hours late to this appointment so we were thankful that they were still able to see us. Basically here we met with a doctor in the practice, Dr. M. She is not the doctor who will be doing Anna Grace’s deliver, that doctor, Dr. C, was not there today and we actually won’t meet him until the day of delivery. We explained our situation to Dr. M and got into their computer system so that we would technically be patients of that practice upon delivery. We also scheduled her delivery date – Anna Grace’s birthday will be Wednesday, December 30 at 8:00 am – well, pending her not arriving any sooner. Please be praying with us that she does not come early because it really is critical that she not be born early. We won’t see these doctors again until her delivery unless there are complications in my pregnancy which require me to go to Charleston before her delivery date.

From there we went for an ultrasound to look over the rest of Anna Grace’s body to be sure that everything else with her looked fine. We spent some time during the ultrasound just looking at our little girl – she has two arms, two legs, all 10 fingers & toes. I started to tear up just seeing her beautiful face and how comfortable and peaceful she looked inside my womb. It was a sweet few moments where I could just enjoy looking at my little girl and enjoy her sweet movements. Our ultrasound technician left us to go review the pictures of our daughter with the doctor who came back in the room after about 30 minutes to go over the results with us. The doctor told us that there appeared to be an issue with Anna Grace’s trachea – the trachea is the tube that goes from your mouth to your stomach. She said that she would like our Maternal-Fetal doctor in Greenville to continue to watch that closely to see how it developed through the rest of the pregnancy. Basically, this would affect her ability to eat – which is serious – but obviously not as serious as the problem with her heart – so certainly secondary to that condition. It was not something we expected to hear as it has not been mentioned to us before. We believe that God is sovereign and that He is knitting together Anna Grace in my womb so in this we will trust Him too. But, please join us in praying that her trachea will begin to develop normally and that this will not be an issue for her. Our sweet daughter appears to have quite a road ahead of her.

After this we took about 15 minutes to eat some lunch at a Subway restaurant that was located in the hospital before it was onto our next appointment with Crossbridge Ministries. A friend of mine from MOPS told me about this ministry in Charleston and I gave them a call and we were able to set up a quick meeting with them while we were there. We met with two wonderful Christian ladies – Lynn & Julie. They met us at the hospital on some benches and they told us about their ministry. Basically, they minister to families who travel to MUSC from out-of-town for serious medical problems (like us). They basically become your adoptive family while you are away from your home, family, friends & Church. They will come to the hospital and pray with you, hold your hand – basically do what your friends & family would do with you if they were in town with you. It was a comfort to know there are people, specifically Christians, in Charleston that I can call if I need to once my family goes back home. I feel really blessed to have them there and thank God for these sweet sisters in Christ who are so willing to give of themselves to love on strangers. Please join me in praising God for these ladies!

Finally, we met with the Ronald McDonald house. We met with the House Manager there who gave us a tour of the house. We were also able to be put on the waiting list since we have a scheduled delivery date – although it is a first come first served basis with Ronald McDonald house so we won’t know if we’ll be able to stay there until the day of her delivery. It really is a nice house and they provide dinner for the families who stay there everyday at 5:30. There are also laundry facilities there. Each family gets a room which has two twin beds and a sink. There are community bathrooms down the hall that everyone shares. The house is about 3 blocks from the childrens hospital so it would really be a blessing if we were able to stay there. Please join us in praying that God will work out the details with Ronald McDonald house.

After that we started our drive home – tired and a little overwhelmed with all that had happened. After we got home I had a voice mail on my answering machine from my doctor’s office saying they needed to talk with me about some test results, so I will be calling them on Wednesday to find out what that is about. Brian also discovered a lump on Zachary’s neck when we got home which we feel like will warrant a visit to the doctor’s office to have checked out. Please be praying with us about these two things as well.

Things I am thankful for today……

I am thankful for friends who gave so generously financially for us to be able to take this trip to Charleston – that truly was a blessing to not have to try to come up with the money for our travel expenses.

I am thankful that all of today’s doctor visits and tests were covered by Medicaid. Praise God who is our provider!!!!

I am thankful that I got to see my daughter’s beautiful face today in 4D – technology used the right way can be such a huge blessing!

I am thankful for a husband who loves God, loves me and loves his children.

I am thankful for the ladies of Crossbridge Ministries who are already praying for our family and are just waiting to love on us – talk about meeting physical needs – thank you Jesus!

I am thankful to be home and for the sweet kisses I received from my son when I walked through the door. Two year olds can be challenging at times but OH… those are some SWEET kisses. I cherish every one of them!!!!

I am thankful for my parents who kept Zachary for us and took such great care of him while we were in Charleston. What a blessing that I could go & know that he was being cared for and loved on!

I am thankful that God says “Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go” Joshua 1:9

Tina B.

1 comment:

Leighann said...

Tina, I randomly came across your blog today while showing my son's nurse how another person found my blog (by doing a google search on HRHS). My son has many similar heart defects to Anna Grace and is now 7 months old. You can read our story at www.marquissclan.blogspost.com I believe also that God is sovereign and has you, your daughter, your husband and your son in the palm of his hand. As my mother-in-law reminded me before Ryan was born, "HE has the itty-bitty baby in HIS hand..."

On a side note - our caseworker at our hospital told us that Ryan would be considered 'disabled' by the government because he has a CHD and so would be eligible for medicaid for life. this doesn't extend to the whole family of course, but you might ask around for anna grace being covered herself.

my email is on my blog if you want more feedback or want to bounce anything off of someone who has been where you are now, feeling the same things. God bless.