Wednesday, June 2, 2010

Prenatal Surgery!!

We were randomized to PRENATAL!!  Very excited, but also very scared at the same time.  I believe this is God's plan for Ruth, and I trust in Him completely.

So, to recap this crazy day:

We met with the pediatric urologist, anesthesiologist, spina bifida clinic nurse coordinator, neonatologist, and the head of the MOMS Study, prenatal surgeon Dr. Diana Farmer.  We also had the fetal echo, which was normal as expected. 

We got our MRI results from yesterday.  The lesion in S1, as we knew before.  Her ventricle size in her brain is now about a 15mm (it was at 13/14mm at the last mri). Her Chiari II malformation in her brain is BARELY THERE!! We barely qualified for the study because it was so mild. That is really good news - Yay!

We met back at the FTC for randomization. We signed consent forms, both of us took a pychological test, and then our fate was up to a computer! I think I prepared mentally more for the fact that we wouldn't get the surgery, than the fact that we would!

So tomorrow (Thursday) night I go to the hospital to be admitted. Friday I don't get to eat, they pump me with medicines and place the epidural (for pain management after the surgery). The surgery itself is scheduled for 3:30 PM CST. I will be under deep general anethesia for the surgery, and will have the epidural for pain for about 48 hours afterwards, with a lot of medicines to prevent premature labor. I do know with this surgery, since the placenta is up front, they will have to take out my uterus and do the surgery from the back side of my uterus. They will not take Ruth completely out, just stick her little butt out to repair the lesion. The biggest risk is premature birth. I will remain on medicine around the clock to prevent contractions until she is ready to be born. Ruth needs to stay in until hopefully 34-36 weeks before making her complete appearance in this world. She will be 24 weeks at the time of the surgery.

We really appreciate all the support, love, and prayers received. I know it's no accident we are here now. Prayers still very much needed for her health, and mine, through this surgery and recovery.

Here is the video that talks a little about the prenatal surgery:

Evaluation Day 1

Sorry this post didn't come last night, we got back really late and I just crashed.  Here is a recap of the day, everything is looking very positive right now!

7:15 - met with the study coordinators, Rachel and Tamara.  They were both extremely nice, and made us feel very comfortable.

8:00 - detailed sonogram with Dr. Filly.  We were told he is a super star in the world of sonograms.  No surprises there, Ruth's lesion was at the same level we expected, she still has club feet and Chiari II, nothing else was wrong with her (no kidney/heart issues, etc).  This was a big hurdle in the study, her spina bifida has to be what they called "isolated".   Meaning, everything she has abnormal has to do with her spina bifida, there is nothing else wrong.

Then we met with the pediatric neurosurgeon, Dr. Gupta.  He answered all our questions, and made us feel a lot better about the risks involved with the surgery, and what to expect with the post natal surgery as well.  He would do Ruth's surgery, whether it is the prenatal or postnatal version.

After that we met with one of the perinatologists, Dr. Wu.  We were both very impressed with him.  He took my history, and talked some about the risks of the surgery.  He also told us how they would do the prenatal surgery.  Since the placenta is at the front/top of my uterus, they would remove the uterus and make the cut at the back/top.  They would pull Ruth so that her little butt sticks out through the opening and do the surgery like that.  She would never be completely removed from my uterus during the surgery.  She would of course, hopefully sometime around 37 weeks, be born with a regular c-section.  I would never be able to have a vaginal birth again due to the type of incisions (plus having two c-sections in the same surgery), but that really isn't an issue for us since Ruth is our 5th and last child.

We had a quick lunch, quite the views here!  The weather is really yucky.  I miss my 100 degree Texas weather, this cold and windy stuff is NOT for me. :-)

After lunch, we went over to the NICU (what they call the Intensive Care Nursery here) and met with the social worker and took a tour.  It was really hard looking at all those struggling babies, but they were so cute.  I can't wait to meet Ruth.

We then took a cab across town to the imaging place for the MRI.  Ruth decided to be VERY wiggly during the whole thing, and it ended up taking more than 3 hours.  I had quite the headache after that was done.  It is NOT fun laying in a tunnel completely still for that long.  I am so glad that was over!! 

We didn't get out of there until after 6 PM (local time).  We walked around to find some place to eat, fighting all the Giants baseball fans since the stadium was right there.  We ate, and took a cab back to the inn.  I was so beat I went pretty much straight to bed.

We had a little extra time this morning since we don't need to be up there until 9, and my body is still running on TX time zone, so I was up around 5. 

Today, we meet with the pediatric urologist, prenatal surgeon, neonatologist, social worker, the spina bifida clinic coordinator, and have a fetal echo.  After all that, the doctors all meet and decide our fate.  We should know if we get the surgery or not by the end of today!!   Prayers still very much appreciated.