I've been really bad at updating..and honestly, I tried many times to sit down and write, but it just wasn't there. And I should know better and remember, that when I don't feel like it, is when I need to do these things the most.
I've sat here wondering how to update..because time always eases the pain. I felt a lot of frustration, anger, confusion and heartache last week..and at the same time I felt comfort. But after all is said and done..I just NEVER felt that peace that all doors were shut and that was the end. That was the hardest part..I was trying to do what I felt was right, I was following the guidance of the spirit in going to Nashville, I've always felt like this fetal surgery was what we were supposed to do..so being told No by 1 Doctor, not the spirit, after we made that sacrifice was so hard to accept.
But we did.
We packed up our bags and flew home. We prayed for comfort that that was the end and we tried to move on with our lives. But my heart was just empty. I tried to throw myself back into work and I tried to walk around the house and get into the festivities of Halloween, and I tried to volunteer at Addy's school..but I felt like I was in a twilight zone and this was just not what I was supposed to be doing. I thought that maybe I just wasn't being humble enough..and this whole time I was doing something that "I" wanted to do. But there's nothing fun or enticing about this surgery. It scares me and it has it's risks..but I was doing it because I felt it was right for our family.
Looking back at Nashville there are lots of blessings that happened. We didn't go there for nothing
Everything happens for a reason.
After being told during our evaluation on Monday that there were some abnormalities with my placenta and that they wanted to wait and see if it healed..we had a series of events that lead us to opportunities to forget about ourselves and help others and share the gospel of Jesus Christ. We helped 2 homeless men that in return helped us more than we helped them. Isn't it funny how that happens? :) It reminded me of the importance of slowing down in life. We didn't have non-stop errands to be running there..so when someone stopped and asked for help, we spent hours talking with them and getting to know their story. What an amazing experience that is. To hear what happened along the way to bring them to where they are now..and share with them how this isn't the end of their story, and how they can move forward and start new. It was so humbling to experience that and remember that EVERY SINGLE person on this earth is struggling with something. Our struggles are just all different. But when we help one another, it eases our burdens. We had lunch with one of them, and helped him find an AA meeting/house. The other we spent the next few days, helping him with different things and having the missionaries meet with him in our hotel room. We've talked with him since coming home, and we know those experiences will always stay with us.
We were able to meet a family that had the fetal surgery almost a year ago and meet their adorable little girl. To see her and ask them questions was a priceless experience.
Everything happens for a reason.
We learned more about Camden, about the surgery and what his struggles mean right now. He doesn't have hydrocephalus yet, but he does have the hindbrain herniation which is where the brain is being sucked like a vacuum into his spine, from the hole in his spine. The #1 benefit of fetal surgery, is it reverses that quickly. So being able to do the surgery would help his brain go back where it's supposed to, and he wouldn't get hydrocephalus since he doesn't have it yet. We learned that his defect/lesion in his spine is larger than we thought and the nerves that are connected with those open lumbar regions in his spine mainly affect him from the hips down. Again..closing that hole could prevent more damage to the nerves and be amazing for Camden.
Everything happens for a reason.
Onto the whirlwind of events yesterday:
I had 2 Doctor appointments yesterday. 1 with a new High Risk Specialist who is nationally known and came highly recommended. When he heard about our story this far, he made calls to Denver Children's Hospital where he personally knows 2 of the Doctors on the Fetal Surgery team and asked them if they would consider our case. They said yes. This was before ever meeting us. When we came in yesterday I was blown away by his enthusiasm and energy and expertise. I felt so comforted moving forward knowing I was in good hands. He told us what he'd been doing so far with our case and I immediately asked about the issues with the placenta. He pointed to the ultra sound screen and said, "THESE??? You're worried about these placental lakes?!?!"
I started laughing and said, well yes..that's why Vanderbilt wouldn't do the surgery.
He continued to tell us that 1 in 10 women have these during their pregnancies and they're nothing to be concerned about. But with fetal surgery, the main 3 hospitals don't like anything less than perfect so they always have the best possible outcomes. Understandable..but we've also felt very strongly knowing that I will be okay, and Denver won't put me at risk just to do a surgery..that wouldn't benefit them at all.
He continued to tell us that 1 in 10 women have these during their pregnancies and they're nothing to be concerned about. But with fetal surgery, the main 3 hospitals don't like anything less than perfect so they always have the best possible outcomes. Understandable..but we've also felt very strongly knowing that I will be okay, and Denver won't put me at risk just to do a surgery..that wouldn't benefit them at all.
We've learned that the neurosurgeon that will be performing the surgery on Camden was trained under the Doctor who created the surgery, and he was part of the Mom's study and now trains other hospitals in how to do this surgery. So the entire team may not be the best, but the Surgeon is one of the best. My Doctor strongly suggested meeting with them. so we are. We went to the temple last night and received the answers we needed, as hard as they are to accept and do this all over again. Everything is already set in place and Colorado will be flying us out and providing us with housing.
Huge blessings.
We leave Sunday night, evaluations all day Monday, and I believe surgery is Tuesday but I'm not sure. Friday will be my deadline, when I'm 26 weeks, so it's somewhat ironic that this all fell into place for us just in time. ;)
Huge blessings.
We leave Sunday night, evaluations all day Monday, and I believe surgery is Tuesday but I'm not sure. Friday will be my deadline, when I'm 26 weeks, so it's somewhat ironic that this all fell into place for us just in time. ;)
Everything happens for a reason.
We have done everything we can. We didn't go searching for this last option..it fell into our laps and we know without a doubt that we need to do it. We don't want to..this isn't convenient, we're emotionally exhausted, I am scared for the unknowns of never being in surgery before and praying my body can keep him in as long as possible, and we don't enjoy throwing other people's lives out of whack to help us, but when the Spirit speaks, we listen. and there is always a reason for everything.
Tell me friend, why are you blind?Why doesn't he who worked the miraclessend light into your eyesTell me friend if you understand.Why doesn't he with power to raise the dead just make you whole again?It would be so easy for him.I watch you and in sorrow question why.Then you my friend in perfect faith reply.
Didn't he say he sent us to be tested?Didn't he say the way would not be sure?But didn't he say that we could live with himForever more, well and whole,If we but patiently endure?After the trial we would be blessedBut this life is the test.
Tell me friend, I see your pain.Why when you pray in faith for healing does the crippling thorn remain?Help me see if you understand.Why doesn't he who heal the lame mancome with healing in his wings?It would be so easy for him.I watch you and in sorrow question whyThen you my friend in perfect faith reply
Didn't he say he sent us to be tested?Didn't he say the way would not be sure?But didn't he say that we could live with himForever more, well and whole,If we but patiently endure?After the trialWe would be blessed.But this life is the test.
Tell me love why must you die?Why must your loved ones stand with empty arms and ask the question why?Help me know so I can go on.How when your love in faith sustain me,Can the precious gift be gone?From the depths of sorrow I cry.Though pangs of grief within my soul arise,The whisperings of the spirit still my cries.
Didn't he say he sent us to be tested?Didn't he say the way would not be sure?But didn't he say we could live with himForever more, well and whole,If we but patiently endure?After the trial we would be blessed.But this life is the test.
