Our Trip to CHOP Day 2
The next morning, we got up bright and early, packed the van up and checked out of that creepy hotel room. We grabbed a quick bite for breakfast and made our way back to the hospital. This was the big day, by the afternoon I would have a final answer on if my baby needed fetal surgery. We made our way back up to where the Garbose family special delivery area was, checked in, and waited to be called. The first thing on the schedule this morning was to have a full detail extensive sonogram done which would take nearly an hour or two to be completed. As the nurse appeared bright eyed and bushy tailed, I couldn’t help but jump with excitement to see my beautiful baby girl again since that terrible amniocentesis. As we walked back to the exam room and got prepped, I couldn’t help but think this is it baby girl we are on the home stretch, we are going to make it all better. Now keep in mind that we had many people praying over us and for my sweet baby girl, we all were believing and praying for a miracle. As the scan went on my mom, myself, and the nurse all looked at the screen of the sonogram. The first part was all the measurement gathering, checking the blood flow, her heartbeat, measuring her sack of spinal fluid. The nurse then turned the sonogram into the 3D pictures to get a better look at her spine and the cyst of spinal fluid that had developed. As she was looking at the 3D picture she began to flip back to the normal picture, very intently looking at her sack, examining it, measuring it, looking at it repeatedly. She began to say that there weren’t as many nerve endings exposed in the baby’s myelomeningocele as there typically are with one that high and as she flipped the picture back to 3D to snap one last good picture of my sweet baby girl, the nurse captured her smiling in it. It was absolutely mind blowing, I looked at my mom to make sure she saw it, the nurse looked at me, and I said, “well I guess that was her way of telling me she is going to be okay.” The nurse finished up, handed me the towel to clean off all the extra gel, and walked us back out to the waiting room. She informed us that we were free to go grab some food from the cafeteria and to meet back up here around 11am because the team of doctors needed time to review all the tests, scans, and reports to make the final decision on if my sweet baby girl needed fetal surgery.
My mom and I wondered down to the cafeteria and checked out all the amazing options that they had to offer. They had a grill area, a Chinese area, a sandwich and salad bar, easy grab and go lunches, anything you could of possibly wanted you could find there. Honestly, I was so caught up in the waiting for the meeting with the doctors that our time in the cafeteria was sort of a blur. We grabbed our food, we found of table, and we began to eat and talk in hopes to kill time quickly and make our way back upstairs to get the answer we and everyone else back home was waiting for, if we would be having surgery or not. As time ticked by it finally got close enough for us to clear our spots, throw out our trash, and make our way back up to meet with the advocate who would explain all the tests results, findings, and give us the much waited for answer of our two day trip to Philadelphia. As we took the elevator up, I held my mom’s hand, she looked me in the eye and said, “no matter what honey we will figure this out.” As she finished speaking the elevator dinged and the doors opened, only feet of space and time stood between hearing the outcome of all the tests, and for the first time I wanted time to stand still. We took our seats in the waiting room and the whole waiting process started all over again.
A few minutes went by and our advocate, the one with all the answers, appeared in the doorway. She greeted us and made small talk as we made our way to a small meeting room. My mom and I took seats opposite of her at the table and laid out before us were papers with diagrams, words I have never heard of, and pamphlets of information. The lady began by reviewing all the different tests I had undergone and the importance of each one in making the final decision. After explaining each test, she started with the diagnosis of my baby girl; she did in fact have spina bifida, to be more specific it was a myelomeningocele, the worst form of it. Her myelomeningocele was from her T6 in her spine to T11, meaning it was in the middle of her back and likely to have very many nerves and nerve ending exposed within it. As the lady continued to review her notes and the reports, she shared too much of all our surprise the ultrasound that was conducted showed very minimal nerves within her myelomeningocele, which was very uncommon. Unfortunately, due to her myelomeningocele she also had something called a Chiari malformation of the brain. As she explained that due to the pressure and weight of the myelomeningocele, it was causing the baby’s cerebellum of the brain to be pulled down into her spinal column, she was sketching on a paper to visually show us what she meant. While this was something we did not expect, she did clarify that there was no excess fluid on the brain, meaning that besides the Chiari malformation my baby had a normal brain and would not need any extra procedures for shunts and drains of excess fluid.
After hearing these things, I took a deep breath, knowing the final answer was going to be given at any moment now was killing me. I remember thinking that even if we needed fetal surgery the goodness that we were walking out of the hospital with was well worth it. I remember looking down at all the papers scattered across the table and absorbing all the information that was shared, I looked up at our advocate and asked, “so what does all this mean…will we be scheduling fetal surgery.” As she held my eyes a smile began to spread across her face as she said, “Well the doctors are perplexed and stunned that your baby girl has the worst form, but yet everything has presented it self so mild with limited nerve endings exposed they all agree that your baby does not need fetal surgery. They would like to continue to monitor you and the baby, but they all believe she will be born perfectly fine with very little effects from her myelomeningocele. The only thing they are unsure of is if she will be born with a closed myelomeningocele or an open one, but we have some time before we have to worry about that.” I literally sat there, jaw dropped, and completely in shock of the words that I was hearing, here I was prepared to be scheduling a surgery and she didn’t need it. The doctors may not have understood it, but in that small room I knew He had heard all my prayers and that my baby girl was going to be okay, that God would never give me more then I could handle. As we finished our meeting, gathered the paper work, and all the reports, we walked out to schedule our next appointment at CHOP, I would still see my primary OB/GYN until we got closer to delivery, but the doctors of children’s hospital of Philadelphia still wanted to monitor progress until then just to make sure that my baby girl would be okay.
As we were walking out of the hospital, I couldn’t help but to soak up the hospital and everyone we came across. I think my mom and I walked out of that hospital just a little different then when we walked in. Not for the fact of being told all the good news we had received, but after spending time in a place like that it changes a person. You realize everyone is fighting a battle that you may not have any idea about, so be nice to everyone you meet, because you may just be the only light that shines that day. We made our way to the car and I remember looking at my mom, grabbing her hand and saying, “lets go home, I can’t wait to share the good news with everyone. God has us, and its because of Him that we are leaving today just a little it lighter” and with that we were on our way home.
About halfway home, I decided to start calling and letting close family members and friends know the outcome of our weekend in Philadelphia. I started with my sister Jeanie, as the phone rang, I waited on baited breathe anticipating her to pick up. When she picked up I was instantly at a loss for words, so we made small talk at first about how her and the family was doing and then she asked, “how did everything go? Do you and the baby need surgery?” I took a deep breath and began to tell my sister every detail about the fetal surgery evaluation from the process to the hospital to the different tests that they did, but I saved the best for last. I paused and then told her, “To the doctors surprise her myelomeningocele was a very mild case, with very limited nerve endings exposed, the doctors believe that she will be fine with very little developmental delays and that she does not need surgery!” Jeanie exclaimed, “Oh Kristen, that is amazing news! I’m so happy for you!” We chatted for a little longer, said our goodbyes, and hung up the phone. One phone call down and a few more to go, I thought this wasn’t so bad; actually this is just what I needed. Next phone call was my other sister, Jaimie. I dialed Jaimie’s number, hit send, and it began to ring. Man, the length of time that it took for each ring seemed like time was standing still, finally she picks up, “hey Noodle Head, I was waiting to hear from you.” Noodle head, my childhood nick name from her that has stuck well into my adulthood. “Hey Jaimie, so I was calling to tell you the results and final answer about fetal surgery, do you have a minute to chat” I asked. I should have known that even if she didn’t really have time, she was going to make time to hear all about my weekend of fetal surgery testing and the much-anticipated answer of if we needed surgery. I began with explaining the hospital and how breath taking it was, all the tests and procedures that they did, and then finally got to the good part the answer she had been waiting for. “So after all the tests that they did, the doctors reviewed everything and were shocked to find that she did have the worst form of spina bifida called a myelomeningocele, but there were very little nerve endings in the sac which isn’t normal, but they believe she will have very little issues once she is born, so we do not need surgery” I exclaimed! On the other end I heard my big sister take a deep breath and said, “Oh that is amazing. God totally has you both in His hands. I don’t know how you haven’t cried or completely lost it over all of this. I cry over it all the time for you, but you have been so strong and brave through all of this.” As she finished I could her the tears in her eyes and her voice getting choked up, I simply replied, “I do cry every once in a while, but I know that God won’t give me more then I can handle. I get my strength through Him and believing that He has us and we will be taken care of.” It’s not often that as a little sister, you get to be an inspiration to your older siblings, but this was a moment that I will always remember. We talked for a little bit longer about what was to expect and how I was moving forward with CHOP and appointments, said our goodbyes, and hung up the phone.
I sat in that moment for a little bit, I didn’t think anything of everything that I was going through, I was doing it because I had to do it for my baby. Reflecting on that time though moves me to tears nowadays, to be so young and faced with such big decisions, God clearly knew what he was doing in the midst of all of it; to see how He was at work through it all and never left us is absolutely breathtaking. After sitting in it for a few moments, I turned up my moms radio, turned on my favorite jam song, and sang my heart out, mom laughing and on that drive I found a moment to breathe in all that God had done for me and my baby; the other phone calls could wait until later.
