Little Miss Difficult

It is already clear we are going to have a feisty little one on our hands. We have hardly had a single test where she cooperated. For the past month we have been subjected to weekly checkups, non-stress tests and ultrasounds. With each exam there is a certain criteria the baby must meet to be satisfactory. During the non-stress test the doctor is looking for a certain level of ups and downs in her heartbeat. After our first test lasted almost 40 mins passed the standard 20 mins, the nurse suggested the next time I bring a snack to try to stimulate the baby. So this week I came prepared with juice and granola. Lucy did cartwheels for the non-stress test and then completely fell asleep for the ultrasound. It's frustrating that because I fall under the "high-risk" umbrella due to the spina bifida we must be subjected to all these extra tests, even though we know there is nothing wrong...other than what we know is wrong. Other than the hole in her back, Lucy is perfectly healthy. Hmm. It's amazing how far the mind can progress in a matter of months. Our little peanut will surely face some challenges in her life. But in reality she will have much more in common with her peers than not.

7 weeks to go!

Wow, the last month has flown by! I am now 31 weeks pregnant so we only have 7 more weeks to go before we meet our little Lucy-Lou!! After a few months of chaos surrounding her diagnosis, it has been nice to have some time to just be a normal pregnant woman again. At this point though I sort of feel the chaos coming back as we approach the final weeks. Overall I am still feeling very good, just tired and feeling bigger by the second!

I am feeling nervous about my surgery and of course even more so for Lucy. We have a good team of doctors in place ready for her arrival though so at this point we are just ready to meet her and hold her and deal with whatever may come.

You're too Good for Surgery

After many phone calls and a couple sleepless nights word finally came last Tuesday that our insurance company had approved our trip. Wednesday afternoon we headed out for a whirlwind 24 hours in Philadelphia.

We reported to the Children's hospital at 7:15am Thursday morning. After a quick overview of the day with our coordinator our first appointment was a detailed ultrasound which lasted close to 2.5 hrs. Of the two or three we had previously this was certainly the clearest images we had seen of our baby girl so that was a fun way to start the day!

After the ultrasound we met with the genetic counselor. She made a chart of our family history to help determine if there was anything in our families that would increase our risk for any particular condition (there wasn't). By this time it was about 10:45am so we were ready for a break. We had a few minutes to relax before it was time for the MRI. I had never had one before so I wasn't exactly sure what to expect. It was certainly a test of mind over matter. That tube is so tight! For the first few seconds I didn't think I was going to be able to go through with it. Then I just tried to close my eyes as much as possible to keep calm. It lasted about 45 minutes. I certainly would not want to do that again any time soon but it was manageable. I was so happy when they said it was over though!

It was now almost 1pm and we had not had any lunch. We stopped into the convenience store on the 1st floor to pick up a few snacks. Kenny had filled his coat pockets with snacks from home but our supply was dwindling! I was not allowed to eat much before the MRI for fear it would excite the baby and prolong the test....and we do NOT want to prolong the MRI. I even got Kenny in trouble with our "Mom" for the day when she caught him handing me a chocolate chip granola bar. I was just looking at it, I swear! Sorry Kenny ;o) 

Next on the agenda was the ECHO. This ultrasound is a specific look at the baby's heart which lasted about 30-45 mins. You would think that just laying on the table wouldn't be too hard but after hours of testing I was getting antsy. Thankfully we are down to our last two appointments of the day! Our next meeting was definitely the most informational. We sat down with the high risk OB who went over in detail the results of all the tests we had just had. Using a diagram of the body she went from head to toe explaining what issues we know our daughter will most likely have and what issues are still a possibility. The information we were given was consistent with the preliminary testing we had done at home, just a little more in depth. I think it was beneficial to us to have it presented in a head-to-toe manner so that we could envision our daughter as a whole person, and not just the defect we had been focusing on for the last few weeks. She told us that on the Spina Bifida spectrum our daughter is consistently at the mild end. She will most likely have a few manageable issues but will certainly be capable of living a happy and fulfilling life.

Our last meeting of the day was with the Chief of Neurosurgery. One of the first things he said was "well, you're too good for surgery". Our daughter's diagnosis is mild enough that doing fetal surgery is not worth the risk. This is good news! We know that we have done everything we could up to this point. Now we can try to relax and get ready to welcome our baby girl home in a few months! 

There are two key phrases I have learned go hand in hand with Spina Bifida. "Wait and see", and "but this could change". There is not a doctor on the planet that could predict with 100% certainty what our daughter will face in the years to come. We will arm ourselves with as much information as we can with the understanding that we will just have to hope for the best and take whatever comes our way! 

Amnio Results

We finally got a call from the genetic counselor on Wednesday. The amnio showed an elevated AFP level which indicates the lesion is open. This doesn't really tell us a whole lot other than the fact that we need to pursue fetal surgery to prevent any further damage before birth. Next we will be going for a surgery consult at the Children's Hospital of Philadelphia. They have an intensive program of testing that will give us more information about our daughter's diagnosis and whether we are candidates for the fetal surgery.

It's a girl, do you want to keep her?

Friday morning finally came after an agonizing week of waiting. Kenny and I headed over to the specialist for our level 2 ultrasound. After waiting for more than half an hour we were finally escorted into the room. The ultrasound tech was very friendly pointing out femurs, kidneys and hands as she went. Then as nonchalantly as she pointed out the organs she said "I see girl". I actually almost missed it. I said "you think it's a girl?". It's a girl! We are having a girl! I looked over at Kenny to see the biggest smile on his face. The tech continued her scan as the news settled in. She said she had a few more images to capture and then the doctor would be in. I was certain that at any moment she would be telling us our baby girl was fine and we could go home to celebrate. 

As the doctor walked in the ultrasound tech asked him if he had reviewed our images. He said no. She said "I'm thinking "mening" not "myelo". Instantly I realized we were about to receive bad news. A couple minutes later the doctor looked at me and said very matter of factly "this is a classic meningocele". Our daughter has Spina Bifida. Instantly I was overwhelmed. I reached out for Kenny's hand and tried to understand everything they were saying. I heard words like "defect", "spinal cord", "amniocentesis", and "surgery". The doctor pointed out our daughter's defect on the ultrasound. He told us we would need more tests to understand the severity of her condition. He told us there would be other things to consider like having fetal surgery and whether we wanted to continue the pregnancy. We were told the genetic counselor would come speak to us about our options. A few minutes later the doctor and ultrasound tech left the room to give us a few minutes alone.

As the door closed behind them I unraveled. I wrapped my arms around Kenny and cried from deep in my soul. We felt such joy finding out our baby was a girl. Then just minutes later they were telling us she might not ever come home. There really aren't words to describe how devastating that is. By the time the counselor knocked on the door we were in a state of shock. The tears turned to questions but it was difficult to find words to articulate them. We were told the amniocentesis was optional, and not without risk, but we decided to move forward with it to get more answers. The counselor left the room to set up the procedure. At this point we had been in the office for more than three hours. Kenny was so strong. He looked at me and said "please don't cry, we have to be positive". So through glassy, tear filled eyes I said "I'll try".

After about 15 minutes the ultrasound tech led us back to her room. The doctor came in right after us and quickly began prepping for the amnio. I'm glad it was done so quickly because I would have been really nervous if we had to wait for another day. It really wasn't that bad. Certainly not something I'd like to do again, but not nearly as bad as you think it's going to be when you see the size of that needle. At this point we have to wait for the results of the amnio to decide what to do next. So again we wait...

It could be nothing, but...

Yesterday Kenny and I had our much anticipated 20 week ultrasound. We had been counting down the days for weeks hoping to finally know if we were having a boy or a girl.

After a while I began to notice the ultrasound tech acting flustered. She told us we would have to have another scan because the baby's position was preventing her from getting the necessary images. She also was unable to tell us the sex...which seemed like a big deal at the time. After the ultrasound we went across the hall to wait for our checkup. A few minutes later the doctor told us she saw something on the ultrasound. She told us it could be "nothing" but if it's something this is what it is. She then handed me a post-it with the word "Myelomeningocele" on it. She asked if we had any questions. I was blank. It had never really occurred to me that something would be wrong. It wasn't until we got home that I googled the word and realized our baby could have Spina Bifida. In one minute I went from thinking that not knowing the baby's sex was our biggest problem, to wondering if s/he would ever walk. Devastated is not a big enough word for the pain I was feeling.

Our doctor told us to wait for a phone call from the specialist. She told us we would go in for a level two ultrasound ASAP. In my mind I thought they would call any minute and we'd be out the door. No such luck. It was more than 24 hours before the office called. Your appt is Jan. 27th she said. Jan 27th?! It might as well have been Oct. 27th. How can I wait another seven days not knowing if our baby is OK?! Unfortunately we don't get to decide, so we wait...