Monday, May 21, 2007

Email #1

This is the 1st email I sent to our loved ones...

Hello to all of our family and friends-

The Designer and I had a busy past few days! Where do I begin....

Day #1
We left our house on Thursday morning at 4:30am. It was very difficult for me because I was not sure if I would see my "puppy" again until Sept. or Oct. and as most of you know, he is definitely one of my best buds. I was not sure when I would see Denver again. Also, I was not sure if I would be back to Colorado or if this was goodbye forever to my life here. Also, the day before was my last day at work and I am not going to be a Legacy next year, so that was challenging saying goodbye as well. Overall, I was just VERY emotional.

When we left for San Francisco we were hoping and praying that we would be selected for the inutero surgery group. We wanted to give our little "princess" the best chance for a "normal" life and felt that that would be the best chance of doing so. We were, however, praying still that God's will be done and not ours!

We arrived at the San Francisco airport at around 8:30am and took a shuttle to our bed and breakfast, which was one block away from the university hospital. Our first appointment was at 10:00am. It was for an ultrasound. We got to see great pictures of our little girl. She was a wiggle worm, which is pretty typical lately. The sonographer was friendly, but did not give us much information. The doctor came in and spent some time with us, but did not really talk to us much either. That was frustrating because we wanted to know what was going on. We asked if he could see where the lesion was at on her back and he said he was trying to find it and never did tell us. Thankfully, we found out from someone else later (more on that later).

We were supposed to meet with a social worker and some of the other doctors for consultations, but we were behind because our first appointment took so long. Instead of the consultations, we ate lunch before our next appointment, which was with the cardiologist at 1:00pm. The cardiologist looked very closely at the baby's heart. She said what all of the other doctors had said since we learned we were pregnant. "Wow, she has a beautiful, strong heart!" Nothing wrong there!! While I was laying on the table having the Echo, Dr. Harrison came in. We had no idea who he was, but soon found that he is deemed, "the grandfather of fetal surgery." He is the guy that was going to actually open me up and get the baby ready for the neurosurgeon to do his magic. He was so friendly and calming. It was a relief to meet him. He is the one who told us that the ultrasound found that the lesions is in the L5-S2 range. That is lower than we had originally thought and probably means a better prognosis with regards to her mobility. We are very pleased to hear that.

After the Echo we finally met with Stephanie, the social worker. She was very high strung, but very nice. She said that we were holding up remarkably well (better than most) and wanted to know how we were really feeling. Besides tired we responded that there was no reason for us to worry because God had everything under control and that is exactly how we wanted it. She commended us for that. She then had the perinatologist come in. He would also be part of the surgical team. He came in and talked about the inutero surgery itself. He explained the risks and rewards. He reminded us that there was no confirmed rewards to the inutero surgery and that is why this is a clinical trial (experimental) in the first place. He then added that there were additional risks in my situation. The baby is breach and the placenta is on the front side of my uterus. Because of this, they would have to take the entire uterus out of my abdomen, flip it over, make the incision and do the surgery on the baby. The extra risk revolved around the placenta. If anything happened to that, the likelihood was that the baby would not survive! They have done some surgeries with this additional risk, but could not really give us statistics on it. He told us a lot of other things, but The Designer and I both left having some serious red flags about the inutero surgery. We met with the neonatologist and he explained the consequences of a premature birth, which was likely to happen if we did have the fetal surgery. After those consultations were over we had a little break (not long enough for a nap though!).

We got to finally meet the surgeon that would actually do the repair on the baby's back. Dr. Gupta is one of the best neurosurgeons in the world! He was very direct and at times seemed somewhat agitated with our questions, but he did answer them all. He would be the dr. for her back surgery whether it was done inutero or after birth.

Finally we were done with our first day and we were exhausted. We went to get some dinner and then to the UCSF bookstore, which was right across the street from the hospital. We bought the baby some scrubs! They are adorable. We went back to our room and crashed for the night.

Day #2
This day started very early as well. We had an MRI scheduled to begin at 7am and it was on a different campus, so we had to shuttle over. We had to get up early to get there on time. The technician told us that fetal MRI's usually take 1h 10m, but sometimes can take as long as 1h 30m. I am slightly claustrophobic, so the thought of an MRI was kind of freaky to me in the first place, but I knew that I could handle anything for our baby so in I went. As soon as I laid down on the table the baby started moving and did not stop until the whole ordeal was over! I could not believe her! Because of her being a little stinker, I was in the tub for 1h 45 m and it felt like an eternity. I thought I was done and then the tech said that he had to redo some shots because the baby wouldn't sit still. I survived, but boy was I ready to get the heck out of there! Later we got to see some of the images and they were amazing. Also, we learned beforehand that this is the only machine of its kind in the entire WORLD and that we had the best technology ever, looking at her. We knew we were getting great care for our baby girl.

We then were supposed to meet with the social worker again because she was supposed to make sure we were ready to say yes or no about participating in the study. After stopping for a breakfast and a LOT of prayer, we headed up to her office. We were still very anxious about the news with the placenta and the extra risk involved. We told her of our concerns and that we wanted to meet with the doctor who told us that info again before we made up our minds. She set up the meeting. We talked to him about our concerns and he made me feel a little better, but not completely. I asked him if he would recommend his wife have this same surgery, should it be necessary and he flat out said NO! But, he said, that was because he had other children for her to care for. He said it was not because of the risks involved with the baby. Still, The Designer and I were not completely comfortable.

We walked over to where we had to make up our minds officially. We decided the night before that we would tell them we wanted to be in the study, they would then "flip the coin" so-to-speak and if it came up with inutero and we were still uncomfortable, we would back out. We were told that although legally they couldn't make us participate, it would be a huge disservice to all involved if that occurred and that they expected a level of commitment from us. They said that if we were not ready we could have more time. The Designer and I knew what we had to do. We went in and told them that we wanted to be randomized knowing full well that God was going to have to intervene and have His will done. We prayed and waited for the results...God is awesome and knew exactly what we needed and had us selected for the post birth group. We were both relieved, but I really thought The Designer was going to kiss the lady! :) He later told me he would have thrown up on her if the results were different! YUCKY!!!!!

After we finished all of the paperwork The Designer and I spent a night on the town. We went to Fishermans Wharf and took a short cruise around Alcatraz and under the Gold Gate Bridge. It was beautiful. We saw lots of Sea Lions, wind surfers, and beautiful scenery. It was so relaxing and enjoyable. We also found a shop that The Designers mom told us about where you can pick an oyster and they open it up and get the pearl from inside. The Designer decided to have that made into a necklace with the baby's birthstone (Sept) on it. It is cute. I will wear it until she is old enough to have it. We were exhausted again and took the streetcar in the wrong direction, so it took us over an hour to get back to our room. By that time I think I was sleep walking.

So, what's next?
Well, since were are in the post natal surgery group, we will be flying back to San Francisco in the first week of Sept. (week 37 of pregnancy) for a c-section. They will do an amnio to see if the baby's lungs are developed and if they are, we will have the c-section that same day. If they are not, we will have to wait for a week and then they will take her by c-section. Either way, the day after she is born they will do the back repair (closure) surgery on her. I will be in the hospital 3-5 days and the baby will be in for longer, depending on how well she is doing. If the fluid on her brain doesn't drain itself, they will put a shunt in her head when she is about 7 days old. There is quick recover from that surgery. They told us to plan on staying in San Francisco between 2 and 3 weeks total. We absolutely cannot wait to meet our princess!!!!

Prayer Requests:
I know that so many of you have been praying for us over and the past three weeks. It has been such a learning and growing experience for both The Designer and I. We are so blessed to have friends and family like all of you, who care so much for us and our little princess. We could use prayers as follows:
1) We are still moving back to MI this summer, so pray that the move goes smoothly. 2) Pray that the pregnancy continues as it has been going or better. We don't need/want any other surprises unless they are good, of course! 3) Pray that our house sells quickly 4) That the surgery in Sept. will go well and, or course 5) For a miracle that our little one will be healed completely by the grace of God and she will have no medical problems when she arrives.

Please know that The Designer and I are both at peace with everything that has happened and is still happening to and around us. We see God at work around us each and every day and feel so fortunate to call ourselves children of His. We know that God works for the good of those that love him and we are no exception.

Thank you for your continued prayers. God bless.
The Designer, The Professor & baby

2 comments:

Sherri said...

Your last couple of posts left us hanging and I couldn't wait to read your next post! God always takes care of us :)

I'm forgiven said...

I love it when you were selected for post birth surgery for the baby and you said it was good because if they told you anything else, the designer would have thrown up on the lady. So funny in the midst of all the unknowns. Wonderful to hear of you faith through it all. Anita