Wednesday, June 2, 2010

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.

6 comments:

  1. We are praying for you and your sweet babies!

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  2. Kristen
    I am a friend of your mom's but want you to know that I am praying and will send this prayer request to my church and my Bible Study group. I am a strong believer in prayer and I know I serve a mighty God. I want to pray right now...
    I ask Him right now in the name of Jesus to stop the growth of this teratoma and even shrink what is there. Father I ask that you give this sweet couple and their families peace that You are in total control of this situation. Father I ask that their finiaces are met as I am sure there has been many medical bills. Father God I know You will receive the Glory for the healing in this baby. I also lift up the other lady that Kristen met while she was in Cincinnati. We do not know what was going on but you do and we ask that you give her peace also. Father God I just love and praise You and thank You for what You are doing in this baby right now. In the precious name of Jesus I pray. Amen

    Kristen I know God is working right now as that sweet baby is growing in your tummy. I will continue to pray and stand on the Word of God for your healing. I love your mom dearly, she was my grandbabies teacher during a real hard year for us and was always there for me.

    Theresa Holderfield

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  3. Still praying for all of you! Give all of your worries to God and He will take care of the rest!

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  4. Kristen, I have really been thinking of you all often. I really feel like things sound very positive. I will continue to pray for you all. If there is anything that I can do, I would really like to help.

    Melissa Moran

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  5. "Ah, Sovereign Lord, you have made the heavens and the earth by your great power and outstretched arm. Nothing is too hard for you." Jeremiah 32:17

    We are praying for all of you! With much love, Paul and Jen

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  6. Praying for you guys! "Be strong and courageous, do not fear or be afraid, for the Lord your God is with you; he will never leave or forsake you." Joshua 1:9

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