Friday, September 16, 2011

Learning More at Children’s Hospital

Yesterday we got to visit the children’s hospital where Mason will have surgery shortly after he is born.  My husband and I met with several people and came away with too much information to even process, but that’s okay.  We were able to get some questions answered and learned things along the way.  I thought I would share our visit so I don’t forget it.

First we met with Becky, the Fetal Diagnostics Coordinator.  She’s full of information and is one of our go to people if we have questions or need to set appointments between now and Mason’s birth.  She gave us a tour of Children’s.  We walked all over that hospital and went to a place I never wanted to go – the NICU, or Neonatal Intensive Care Unit.  Talk about overwhelming!  We walked between aisles and aisles of babies who are all very sick or very early or some combination of the two. 

I am grateful, don’t get me wrong.  Seeing how well-equipped each area was, the many monitors, nurses, video cameras, and more all right there to help was reassuring.  I just don’t want my baby to need to be there.  It breaks my momma heart that he won’t have the ‘being held every moment’ experience that the others started out with.   

We got to see a little guy who was being released that day who has Spina Bifida.  Honestly, that was a total blessing.  Spina Bifida is not super common, so our large childrens hospital only sees about 10-12 babies born with it each year.  We were able to talk with the nurse caring for this little guy, ask her questions, and even see the place on his back where he has been “put back together”.  While each child’s scar/closure will be different, it was nice to see one in person and know that at just 9 days out he was able to be laid on his back and was healing nicely. 

After the NICU we spent time talking with Becky and another hospital person who will be there for questions as needed.  Becky asked if we plan to stay at the Ronald McDonald house there beside the hospital.  I had not thought that would be possible as we only live an hour away, but we are in another county and so we can.  Yes!  Being a five minute walk through the hospital from my son or an hour plus drive in winter weather is pretty much a no-brainer.  While my husband will also spend some time at home with the other children, I will stay pretty much completely there.  Especially since I’ll be recovering from my own surgery (oh joy).  I won’t be any help at home with my six older children, they won’t be allowed to climb on mommy, and Mason really needs me more for that two week period.

Our next stop was an appointment with the pediatric neurosurgeon who will likely do Mason’s surgery on his back, as well as putting in a shunt if it is needed.  He was okay, but a bit annoying.  His outlook seemed to be, “You won’t know anything for sure until the baby is born, so there’s not much to say.  And your baby doesn’t have hydrocephalis yet (though he’s got a 90 percent chance of it and will require a shunt) so why talk about the shunt procedure either?”  Grr….  Thankfully I had a list of questions I wanted to ask, so I got those answered and we could move on. 

Our third appointment of the day was with a lady named Margaret.  She’s the Nurse Coordinator for the Myelomeningocele Clinic at Childrens.  She is the person who will help us coordinate care for Mason after we’re released from Children’s.  She’s our resource person for living the rest of our life, basically. 

I also like the way Children’s Myelo Clinic works.  Every Friday they have clinic and a doctor, therapist, or specialist for pretty much anything a spina bifida child could need will be there.  You show up in the morning and see whomever you need to over the course of a couple of hours.  YAY!  That means we’ve combined multiple doctors and practices into a single visit. 

So How Do I Feel Now?

We’ve known about Mason’s Spina Bifida for just over two weeks.  While some of the details overwhelm me at times, I’m doing pretty good.  I can say 100% that we are thrilled to be Mason’s parents and I can’t wait to meet my little man.  I already wonder who he’ll look like, and what combination of personalities he’ll have compared to the rest of his siblings.  I feel peace and I know that is all God’s blessing.  I’m praying more and feeling closer to Him than ever before because I really do have to just trust His plan. 


  1. Tristan,
    I began following your homeschool blog last year through the TOS Crew. So glad I did!

    I am following Mason's journal as a reminder to pray for you and your family. My prayers are with you today.


  2. Thanks Heidi, we feel the prayers, that's for sure!


  3. Tristan,
    You amaze me. I have been reading your homeschool blog for a while now and I have always enjoyed it. I never have posted a comment before but I really just needed to tell you that your positive outlook and strength is amazing to me. Thank you.

  4. Tristan,

    Praying for you, Mason, and the rest of the family. I remember when I learned about Spina Bifada in high school, it was essentially a death sentence. Sounds like they have come a long way!

    Looking forward to Mason's arrival and hearing more about the special little man God has planned for you!

  5. Hey Tristan! I want to be on the child care rotation for you while you are in the Ronald McDonald house. I don't have to babysit anymore, so I am pretty much available to you all the time. I would love to give you and your family practical help during that time, so LET ME HELP :)

  6. Tristan

    We are praying for all of you. We get a lot of the "I'm so sorry" since our youngest became sick but it's God's will and I'm sure that he has big things in plan for my little boy and yours.


  7. Thank you for sharing your journey. You and your family are and will be such an inspiration to so many. I will be praying for you family, but also for the doctor's so that they will be able to take appropriate actions for both Mason, and you.

  8. Hi Tristan,
    My friend referred me to your blog after she read about Mason and his diagnosis. I have a 3 year old that was diagnosed with hydrocephalus at 19 weeks gestation. She also has chiari malformation, delayed development, reflux and kidney reflux. I have read your posts and can relate to many of your feelings. There are many great resources available and support groups through Facebook. Please find me through Facebook (Lacy Greene Merrill) and I will invite you to these groups as they are private and hidden groups. Some great sites are, and Please check out my blog Carly's whole story is found there. I also have links to the sites I listed as well as other hydro friends who also have children with spinal bifida. My dad works in the temple with a brother who's daughter has spinal bifida and hydro who is leading a completely normal life. There is hope and a close hydro community to lend support. I hope this information helps and please feel free to ask anything.

  9. Another thought, maybe start asking now when Mason can receive a Priesthood Blessing after he is born, Prep the medical establishment if this is something you want before surgery, before transfer, whatever. But since this is not a common request at Riverside or Nationwide, you may want to start laying groundwork, if it is on your list of desires for Mason early on. Hopefully, I have not overstepped any bounds. Just thought you have so much on your mind.

  10. Thanks for the suggestions and prayers everyone!

    Amy Beth - You're not overstepping bounds at all, and that IS on our list of things that must happen before Mason transfers hospitals. We're currently planning to have a second priesthood holder come to the hospital when my C-Section is scheduled and you're right, I need to start make that known to the docs. Thanks for the reminder!


  11. This is amazing! @ 2 weeks after finding out I was a zombie ... a praying zombie but a zombie none the less LOL. Our 1st meeting with the neurosurgeon was "interesting" as well.


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