Wednesday, June 30, 2010

Birmingham Pediatric Surgeon

Yesterday Jeff & I met with Dr. Harmon at UAB/Childrens. He is a pediatric surgeon here in Birmingham. Dr. G thought it would be a good idea to meet someone in case of a emergency situation. He was very nice and all the information he gave us was on target with Cincinnati and the other doctors. That was reassuring.
After meeting with him and weighing all of our options we have officially decided to deliver in Cincinnati. Mainly for their experienced team and secondly for insurance purposes. My insurance does not cover me at UAB and with the cost that we just incurred in one days time at Cincinnati I can not imagine paying those bills!
Although it would be much more convenient to stay here in Birmingham and deliver the girls and for Blakely to have her surgery here, Cincinnati is where we are more comfortable, so that is where we are headed.
My next follow-up visit at CCH is next Tuesday the 6th. I am anxious to have everything checked out again and to get our "final" plan of action. Once we come home we will know the (cross our fingers) delivery date, etc.

Thursday, June 24, 2010

Mama's Profile

This is a picture of my belly 2 weeks ago when I was 22 weeks preggers. I haven't worked up the courage to take a picture more less display on the internet at 24 weeks. Yikes!
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The Girls Headshots

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Check up time

Today was my bi-weekly check-up with both Dr. Christine & Dr. Gonzalez-Ruiz.

At Dr. Christine's office the US technician looked at the girls and got me a great profile shot of Blakely, who for once was cooperating. Palmer, not so much. Everything seemed to be fine with them from their stand point. I measured at 30 weeks which is about 5 weeks ahead. I am actually on 24 weeks as of this past Monday. I will go back to Dr. Christine next week for my routine sugar test. Good times!

On to the next appointment which was at Dr. G's office. They measured the SCT and checked both babies CCO (combined cardiac output). This measurement lets them know if the blood supply is adequate to the needed parts. Dr. G said that obviously the SCT had grown and her CCO was slightly higher than last time. These two things are expected. As long as Blake is growing so will these. He puts things in the Ok or Not Ok category. She is in the Ok category. So this was great news! She is a fighter and a tough cookie. Dr. G said she is showing no signs of distress at this point.

We were to have already met with the pediatric surgeon and neurosurgeon here in Birmingham, but there has been a issue. The original surgeon is leaving Alabama. So we will now meet with someone else next week or at least by the time we go back to Cincinnati which is July 6th. We are only doing this as a Plan "B" course of action for if a emergency were to arise. Basically Jeff & I have decided to deliver in Cincinnati. I have been asking God to guide us on this decision and looks like he is making the decision for us. Thank goodness though that someone is making decisions for us-whew!

Dr. G also stated today that I will start steroids anywhere between 26-28 weeks of gestation to pump up the girls lungs since they will arrive so early.

Seems to be though that AK being so little was a fluke and that I am meant to have big babies. Blakely weighed in at 1 pound 11 ounces and Palmer at 1 pound 10 ounces. He said if they went to term they would be whoppers! I am thankful that my after dinner snack of oreos and milk is doing their body good! Because it is not doing mine any good at all!!!
They are in the 70th percentile which is wonderful for twins!

So today was a good day. I am anxious to go back to Cincinnati to get a final plan for their appearance. It seems so far away when I'm walking to my car in 100 degree weather, but in actuality it is only about 8-10 more weeks. Jeff & I will be parents of twin girls-who is scared???

I got a profile picture of each of the girls today and will post them soon. They of course look just like their daddy and big sis.

Saturday, June 12, 2010

A note from a friend

My grandmother's friend, Kim Posey, sells Longerberger baskets. She has decided to start a fund for Blakely from her commission profits. So sweet. Here is the information.










Thursday, June 10, 2010

Dr. Gonzalez visit

Today was our bi-weekly visit to Dr. Gonzalez who is the maternal fetal medicine doctor at Brookwood. I had a doppler and a echo amongst other ultrasound test today. The doctor said that the teratoma had grown but not much and that the cardiac output was higher but only my a millimeter. This is expected. The twins are both growing so obviously the teratoma and cardiac output will increase each time. They both measured 1 pound and 2 ounces which is right in the middle of the road. Not too big not too small. Hooray! I can't believe they are that big, but happy they are. Dr. Gonzalez agreed with everything the doctors at Children's in Cincinnati said. He is setting us up with a consultation with a couple of pedatric surgeons here in Birmingham. Jeff and I want to get as many opinions about her surgery as possible. Jeff is still wanting me to deliver in Cincinnati and Blake have her surgery there. We are only meeting with the surgeons here just to make sure they aren't as qualified. It would obviously be easier to deliver and have her surgery here, but we want the best doctor. So location doesn't matter right now.
I am not sure when we will meet with the surgeons here at Children's of Birmingham. I will see my OB and the MFM doctor in two weeks, then back to Cincinnati for another appointment. By that point we will have made our decision. Thank you again for all praying. Please continue to pray because either way this is going to be a long journey.

Tuesday, June 8, 2010

Baby B (Palmer) 4-D

Palmer 4-D @ 22 weeks. Blakely would not cooperate (shocking I know) to get her picture taken.
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22 week appointment

I went to my regular OBGYN today, Dr. Christine. The tech measured the teratoma (which had grown from Wednesday) and checked out their heartrates. The heartrates were wonderful. The teratoma is expected to grow though since she was bigger.
My belly measured 27 weeks which is great! The bigger these babies are the better. Not so great though that I will officially be gigantic soon. She has cut out my workouts and any type of exercise completely, so sad:(. No more bootcamp ladies.
We explained everything to her that went on in Cincinnati and she agreed with their findings. We are going to see the MFM doctor here Thursday for a echo of the twins heart and teratoma measurement. We are going to ask him to refer us to the pediatric surgeons at Children's Hospital Birmingham for a consult. We just want to get as many opinions as possible, which Dr. Christine encouraged. Then we will make our decision on Birmingham versus Cincinnati.
Blakely would not cooperate today at all with showing us her face, but Palmer did and I got a great 4-D shot of her. I will post it later along with the gigantic belly! Prepare yourself.

Wednesday, June 2, 2010


Jeff, myself, and my mother-in-law headed to Cincinnati Tuesday afternoon. After several "pit stops" we made it to Cincinnati around 9:00 p.m. Eastern time.
Our appointments started at 9:00 a.m. at Cincinnati Children's Hospital. First, we had a MRI. It lasted about a hour. I was strapped into the crazy contraction on my side, given headphones, and video goggles and watched The Devil Wears Prada. I love that movie. Once that was over I headed over to ultrasound for my 2 hour target ultrasound. The radiologist popped in and assessed some things and said everything looked good from her stand point. A Echo of their hearts was next and btw I was starving at this point because I had not been able to eat all morning. I mean seriously! The echo was fairly quick, 45 minutes. We met with the cardiologist. He said that both babies hearts looked to be doing great! So at this point all was wonderful.
Finally, lunch! We ate in the cafeteria which by the way, kudos to CCHMC, your pizza is amazing!

Off to meet with social services, the RN, and our final team meeting. I had to run back down to radiology to have a quick retest done on one of the scans, ran back up to the Fetal Care Center, and met with social services. The RN/midwife came in next to go over questions and inform us of the staff and agenda for the "team meeting". Side note:

There was a woman who was also having a team meeting (I am assuming she was pregnant as well) and she did not receive good news today. She was heartbroken and crying in the hallway. She has been on my mind and I just wanted to get everyone to give her a quick prayer.

So back to the team meeting. When I say team, I mean team. There were 6 people in there + the 3 of us. Each had their own duty and job. The main doctor was Dr. Liem. They explained to us baby A situation and our plan of action. So here we go....

Blake has a SCT (sacrococcygeal teratoma). Since our last scan 3 weeks in Birmingham at Dr. Gonzalez it has grown 6 times the size of what it was. It now measures 4X4X4. To them, this was still very small and seemed to be growing at a normal rate, not rapidly (which doesn't compute to Jeff cause anything that grows 6 times in size in 13 days is not slow). They said in comparison her brain and her teratoma are the same size just as a comparison. They feel it will continue to grow at this rate which is faster over the next 4-6 weeks then tapering off after that. Dr. Liem estimated that it would be around 1 pound by the time she is born.

The next 4-6 weeks are going to be our "critical" time. This is when intervention would not necessarily have a positive turnout. Once we make it to 28 weeks Blake's chances continue to increase greatly. BTW I am 21 weeks now. The only possible intervention would be to give me steroids to boost lungs and development in case she were in danger and both babies needed to be delivered prior to 28 weeks. The doctor and team didn't feel like this would be the case, but in saying that teratoma's are unpredictable and there is no way to know.

I have a appointment here in Cincinnati in 4 weeks for another ultrasound and echo to compare and monitor the teratoma's progress and Blake's heart. I will also see Dr. Gonzalez bi-weekly as well as Dr. Christine.

The teratoma at this point is not effecting any other part of her body. All of her major organs are great as well as her brain. The teratoma is a type II teratoma. This is good. It means it is mostly outside of her body and only a small part inside. The part or "root" that is inside might be entering her spinal fluid. They are not 100% on this yet. The hope is for it to grow on the outside and not the inside and not effect any more of her spinal cord and fluid. Because it is on her hiney it has the potential to put pressure on her bowel and cause a obstruction. This will not be known until she is born. There are several other things that could be effected but won't be fully known until birth and examination through ultrasound and MRI.

The team here is suggesting we deliver here in Cincinnati rather than Birmingham. Only because the doctors here have a better knowledge and more experience with teratomas. They see and do surgery several times a year. We aren't deciding anything until after the next appointment in 4 weeks. They would like to deliver anywhere from 32-34 weeks depending on many factors.

Game plan for delivery:
I will deliver both twins via c-section. Palmer and I will stay at the main University hospital and Blake will be sent over to Children's. They will run multiple test on her to examine the teratoma. They will need to make sure she does not have any bowel issues or kidney or heart issues before surgery. In about 2-3 days after her birth she will have the teratoma resected hopefully in one swoop. The surgery is 4-6 hours long. Along with the removal of the SCT they will have to remove her tailbone. Can't do one without the other. The doctor feels like research is showing that we have no use for a tailbone. She will need multiple cosmetic plastic surgeries on her hiney due to lack of muscle tone and excess skin from the teratoma. But those will not come until she is a little older. She will need to stay in the NICU for 4-6 weeks then hopefully be able to come home.

Until she is 3 or 4 she will have appointments every 3 months to make sure all is well with her. Once she is potty trained they will know if the teratoma effected her bowel or urinary muscles. She will also have a repeat MRI yearly.

The doctor felt 90% confident that she would not have any other problems after the SCT was removed. He felt like she would be able to run and jump and play as normal. She might have slight lack of muscle development, but again that is another one of the many "ifs" we were told today.

Basically at this point. The tumor is growing but at a slower rate or "normal" rate to the doctors. She is healthy otherwise and seems to not have any effects of the tumor. The possibility of her being born at a safe gestation is good. The possibility of a good or great outcome after tumor resection is likely.

This is going to be a long hard road, but there seems to be a very great and wonderful light at the end of the tunnel. Each week will tell more. We will reassess everything again in 4 weeks and our hope is that the reassessment isn't any different. That is what we are praying and crossing our fingers for!

The staff here at CCH are so nice, knowledgeable, and organized. I was very pleased with my visit and glad we came and are able to access people who have a clue and actually care. The Dr. was confident and sure and that was very reassuring to two parents who are clueless and scared.
Please, please continue to pray for slight to no growth, no pregnancy complications, and our unknown journey ahead.