Cinncinati

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.

Another update

The CCH called and our appointment is changed to June 2nd, which is Wednesday. So we will be leaving on Tuesday. I am actually sort of excited it is earlier because we all know I have NO patience when it comes to waiting.

Cincinnati here we come

I got the call from Cincinnati Children's Hospital yesterday about our appointment. The nurse called and went over stuff with me and gave me a short run down of all they will be doing. We are leaving Thursday the 3rd of June and my appointments will be on that Friday. I will be having several test run and then they will assess her teratoma and we will meet with a doctor and a fetal surgeon.

They are hoping to send us home the following day and never see us again. Once we are back in Birmingham, Dr. Gonzalez will monitor me and Baby A (Blakely) each week with echos and ultrasounds to keep track of the growth. Crossing our fingers she and Baby B (Palmer) make it to a viable gestational age and then they will deliver them via c-section. Blakely "Blake" will then be taken to Children's Hospital here in Birmingham the day of her birth or day after for surgery and will remain in the NICU at Children's until she is fully recovered and can come home. Palmer & I will stay wherever I deliver and then they will send Palmer home once the NICU feels she is good to go.

The nurse at CCH stated that due to my twin pregnancy the options of intrauterine ablation or surgery is not going to happen. It is too risky to the other baby. So if this teratoma is rapid growing the only option will be to deliver the twins, no matter how old or developed they are. If it is before 26 weeks they will be delivered at CCH not here in Birmingham. That is the worst case scenario since most twins are viable before 28 weeks. They are hoping this is not going to happen.

Please keep us in your prayers for safe travel and keep praying that the teratoma is slow growing and not effecting other organs and that her heart remains stable.

Latest Update on Baby A

We heard from Cincinnati today. The coordinator took my information and registered me into their system. She said they were just waiting on my records from Dr. Gonzalez office. Hopefully they got it today and will call tomorrow with my appointment.

I also got a call from my regular OB, Dr. Christine today. She consulted with her friend, a MFM doctor at UAB who said that Cincinnati was the place to be. So that maybe me feel good. Again they both reinterated that the best option is to keep her in for as long as possible and then resect the teratoma after she is born. This would happen the day of or day after she is born at Children's Hospital here in Birmingham, unless they have to take her before she is viable.

I will update once we have our appointment.

Sacrococcygeal Teratoma (SCT) - My Child Has - Children's Hospital Boston

Sacrococcygeal Teratoma (SCT) - My Child Has - Children's Hospital Boston

See earlier post for details

SCT

Today we visited Dr. Gonzalez who is a maternal fetal specialist at Brookwood Medical here in Birmingham. We went to see him because Baby A has a mass on her coccyx or hiney. After a very indepth ultrasound the doctor determined she has a sacrococcygeal teretoma or hiney tumor. The tumor is most commonly benign. This teratoma is due to chromosomes that at conception could not make up their mind what they wanted to do or be. So they formed on the outside of her body. They have cells and vessels like any other portion of her body. Because of this blood is being pumped into the teratoma.
If untreated it will continue to grow as she grows. It can grow to be bigger than her and will at that point put her at risk for heart failure. So the treatment is to remove it inutero. We are being sent to a more specialized doctor at a different hospital in either Miami, Houston, Cincinnati, or Pittsburg. Our doctor is waiting to hear who has the first available appointment. We will then go there and meet with them to get their opinion,diagnosis, and treatment.
From what we understand, after the removal or killing of the tumor she will continue to have normal fetal development and lead a normal life.
Visit the post in the other entry for all the details and treatment options if you are curious.
We are thankful it isn't anymore more serious but are obviously still concerned about her. Keep us in your prayers!

Belly Pics

Here is what the "BELLY" looks like at 19 weeks. It seems to be growing really quickly. I also saw my OB this week. The babies are growing as they should and their heartrates are strong. Baby A has a questionable protrusion coming from the top of her sacrum. We are visiting a maternal fetal medicine doctor today to get a more indepth evaluation. We are hoping and praying she is fine.