Decision Time!

Where should I begin....

Yesterday we had our appointment with Dr. Colvin. He was wonderful, as usual, and every time we go visit him he blows me away with his knowledge! He did a fetal echo and measured some arteries: the pulmonary artery, etc. and concluded that they were good in size; also the "squeeze" of her heart (how it is beating) is good too. These are all important things to have for a successful first surgery!! He also said that he's confident that he could measure her aorta, however, its very small (1 to 2 mm). My heart leaped for joy when I heard him say that he could see it! Praise the Lord! :) I am just thankful it is there. He did make the comment that although it would be easier for the surgeon to work on a larger aorta, it can still be done successfully on one of her size. It's just harder. I'm sure I have mentioned this before, too, but the Norwood is the harder of the three surgeries. The second and third are "easy" he said, compared with the first. So it is just a matter of getting through the Norwood and keeping her stable in between surgeries.

We were given some awesome news about the possibility of where to have Emma Kate's Norwood. Atlanta's Egleston Children's Hospital is apparently a place that children are also sent for this surgery! I have heard about kids from Macon being sent there, but for some reason never actually considered this as an alternative for us. Honestly, this is a HUGE relief. For the past month I've been stressing out about the logistics with Boston or Philly. Atlanta would be a lot easier, especially considering we have family there. However, we do not want to compromise quality for convenience. Dr. Colvin said that the risks for the surgery would be the same as in Boston, Philly, etc and if Atlanta would be more convenient for us (all factors considered) then he is recommending that we go there! This will also be awesome with family being so close!

We still have a final decision to make, though, and this is the situation: Around mid-August, Dr. Knott-Craig (the surgeon who is leaving UAB) will be transferring somewhere. (I don't know where, but I'm kind of curious to find out). This makes it kind of hard to know what to do with my due date being August 24 (only 8 weeks away! Yikes!) Here are the options as we were told. We can:

A) Wait around to see if Dr. K-C will still be here when I deliver here in Bham. Then wait for Emma Kate to come on her own (which could be WHO KNOWS WHEN, deliver here and if he is still here, stay here. If not, have to figure out right then where to go. Seems kind of last-minute and STRESSFUL to me).

B) Go ahead and plan to have Emma Kate here in Bham and also plan on making arrangements at another hospital to have her first surgery.

or C) Plan an induction date in another city (Boston, Philadelphia, or Atlanta) have her there, and have her first surgery where we plan to be.

Please pray with us as we talk to the doctors, do the research, etc. Also, if anyone out there knows of any children who have HLHS and been treated at Egleston, I would love to hear their experiences! Especially any information about surgeons would be helpful.

Poor Brooks had his wisdom teeth pulled the day before this appointment and I'm sure he was completely miserable sitting there while being in so much pain. He's such a good husband and father for coming with me. The nurse at the front desk was so sweet and gave him some ice packs for his swollen cheeks as we were leaving! She was really kind and she's always reassuring about stuff with Emma Kate. She was commenting how these next couple of years will be really tough, but they see kids who have heart issues who are older, in their twenties, and doing very well.

Just wanted to remind myself...

"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well" Psalm 139: 13-14

GREAT visit!

I'm 30 weeks! Wow! I can hardly believe that there are only 10 weeks left until my due date! I had an appointment for a routine check-up with a doctor I hadn't met before, Dr. Kimberlin. This was my first "regular" appointment in Maternal/Fetal medicine (the high-risk pregnancy docs). These doctors will be taking care of me from now on. Dr. Kimberlin was SUPER nice! I really liked her. She gave me a "Welcome Packet" with information about UAB hospital and some other stuff. She also discussed my history and stuff. This Maternal/Fetal medicine group of docs that I will see now include 10 doctors!! Now I have met 3 of them (Kimberlin, Owen and Davis).

I had a few questions today about delivery, since I know I'll be delivering Emma Kate @ UAB hospital. Basically, they want to let me stay pregnant until EK is ready to get here on her own. NO induction unless absolutely necessary. They want her to be as big and healthy as possible so she can be stable for all the action that will happen after she's born. I know she'll need every ounce and pound she gains! (I am taking advantage of this, by the way. I ate a whole pack of Oreos in 5 days!!)

One thing I need to put on my priorities list is to get a sibling tour of the hospital so Anna Brooke will be slightly more familiar with the floor when we go to have EK! And if she has the photographic memory that Brooks believes she does, she'll definitely remember. That child remembers everything! Oh, and one other cool thing I found out is that when patients deliver at UAB, they get either a free stroller/car seat combo or a Medela breast pump! SCORE! So I signed up for a breast pump since we've got the other stuff already. I was so excited about that!

Next week we go talk to Dr. Colvin about our little one's heart some more. Hopefully we'll get some answers on the aorta situation. Thanks for all the continued prayers. :)

Emma Kate's Aorta

diagram of a hypoplastic left heart

We went to see a doctor in fetal anomalies named Dr. Davis who I actually really liked. He is part of the practice that Dr. Owen is also part of. Dr. Davis was great! All he did was a sono. My regular check up (where they do weight, blood pressure, etc) is next week. Anyway, Emma Kate is growing really well, he said. She weighs about 3 lbs, 3 ozs. All that is normal, 54th percentile for babies her gestational age. However, he said he didn't see her aorta, which is a major blood vessel from the left ventricle to the body. Typically in HLHS patients, the aorta is abnormally small. For some reason, when he said that he didn't see this, it really freaked me out!

At our last visit to Dr. Colvin, he said that he thought he saw it, and even measured it at about 1mm (normal at this point is about 5 or 6mm, I believe). However, he could not be 100% certain that he saw it. That gives me a little more hope.


Our next visit with Colvin is in 2 weeks. I am sure he'll look again for it. As I've learned recently, the heart is still growing and things tend to "appear" (easier to see?) later as she gets bigger. If I feel the need, I'll get a second opinion on her heart maybe by sending tapes up to Boston or Philadelphia. I hadn't even thought about this until I e-mailed Erika (Sammy's mom) to ask her what her thoughts were. Another HLHS mom suggested getting another opinion. I'm glad I have this support, because I don't know what I would do without it. I'd be lost, for sure! (Thank you, Erika, and other moms, for all your support!)


Anyway, I don't know what the prognosis is for a child without an aorta, but my request is to please pray that Emma Kate has hers!! I know God isn't going to give us anything we can't handle... its just so scary. On the way home from our appointment, I just broke down. I have been so emotionally exhausted ever since. It's been very hard just to think about Emma Kate going through all she will go through. It isn't too late to pray for healing, either. I believe she will be healed with all my heart, however God chooses to do so.


By the way, we got a little more clarification on the whole "going to Boston" issue. Dr. Davis was very aware of the surgeon leaving who performs the Norwood (1st surgery) before my due date. He said that he would suggest we have Emma Kate here, in Birmingham, and afterwards, she will be airlifted to Boston or Philadelphia or somewhere else. (I still have some questions about when we will find out where!) Then we will follow. Another prayer request: Anna Brooke. I am assuming that we will bring her with us, but we'll obviously be busy. Just pray that we have adequate help with her. I don't know how, but I have faith that God will work it out. I have to have faith in this, because it is driving me crazy to think about leaving her.


Okay... I'm really tired. Goodnight!

Lots to catch up on

We have some news that most of you are probably already aware of via Brooks' blog. But I'll summarize. We visited Dr. Colvin, the pediatric cardiologist, a couple of weeks ago and were blindsided by the news that Emma Kate's first surgery is probably not going to be performed at UAB hospital. Come to find out, the only doctor that performs the Norwood (1st surgery) is leaving UAB the first of August.

What does all this mean? We have some options, but most likely we will be going to either Children's Hospital of Philadelphia (CHP) or Boston (CHB). The pioneering surgery of the Norwood was performed at CHP. However, the leading doctors in the country that do these surgeries are located at CHB. Plus the fact that we have done some research and feel that CHB will be a better option for us.

Additionally, this also raises a question in our minds: What do we do with Anna Brooke? We always assumed up to this point that we would have help here in Birmingham and she would be able to stay in the comfort of her home. However, with all the stuff that goes on before/during/after Emma Kate's surgeries, we will need to bring AB with us. Who will help us? Where do all of us stay? What do we do with her while we are at the hospital? How will all of this affect her, my sweet girl? The last thing I want is for her to feel "abandoned" and left somewhere without seeing Mommy and Daddy for weeks.

Another question: Do I have Emma Kate at CHB? or at UAB and airlift her to Boston? If her first surgery is in Boston, will ALL of her surgeries have to be there? Should we have them elsewhere?

A lot of this depends on insurance, unfortunately, and I have no idea what to expect. We still have a lot of asking to do and a lot of answers to wait on before we can make any decisions. Let me also say that I am typing this out after digesting all of this for a couple of weeks. When we first found out, I was basically hysterical! I had no idea what to think. All I could do was cry and sleep and say "WHY?"

This is not easy, but we are depending on God, on our friends and family and on the resources we are being provided through others. We've been very blessed by all of the support we're being shown and are so thankful for it! I don't know what we'd do without it! I know that there's a reason for all of this and that ultimately God will be glorified in all of this. It's just hard for us to see now.

On Thursday I go in to see Dr. Owen, who made EK's diagnosis. He will be my OB/GYN from this point on. I am hopeful about this appointment, but I'm also kind of dreading it because of our encounter last visit.

Emma Kate seems to be doing very well. She is moving A LOT! Not as much as Anna Brooke did at this point. But I wonder if the reason I feel that way is because I have a 2 year old to keep up with this time! Lately all I have been craving is hot dogs, hamburgers and root beer floats. Oh yeah, and grapefruit. This is weird to me because all I craved with AB was Sweet Tarts. Very bizarre. :)