Wednesday, November 30, 2011

Dumb OB and the Dreaded Hydrocephalus

ROWLEETRISTAN20111130143249603Today was ultrasound day, as well as meeting an OB at the hospital where I’ll deliver.  It’s a bit of a long story, and there are updates and changes in Mason’s status, so read on to learn all about it!

First I went to meet the OB who is likely to perform my C-section.  Ahem, I can tell you right now she won’t be the doctor doing my surgery.  First, the clinic was late so they had to call upstairs and tell my perinatologist and ultrasound that I would be late to their appointment.  Then when the OB came in to talk to me and check me out she had no clue about my situation.  She knew Mason has SB, but she thought I was just having a vaginal delivery. 

She tried to tell me I didn’t know what I was talking about (that we would need a C-section).  Ha!  Don’t even go there lady.  We got that cleared up - I have to have a C-section because Mason’s opening on his back is so high and big that the only way to protect it from further damage is to deliver without him being squeezed through the birth canal. 

She then proceeded to explain that we would just plan to deliver a week before my due date and that I really didn’t need to have more ultrasounds.  “His spina bifida isn’t going to change, so you don’t need to keep looking at it,” was her reasoning.  WRONG again.  We’re not checking his SB in the ultrasounds, we’re watching for hydrocephalus to begin (fluid backing up in the brain, swelling).  That can change right up to delivery.  Dumb lady.   

So after all that I finally get to go up to Maternal Fetal Medicine and wait for them to fit me in for my ultrasound now that I was 40 minutes late thanks to the OB.  They got me in with an ultrasound lady who had not seen me before.  Can I just say here folks that it’s important to know your history and what questions to ask?  She and a student did my scans.  I saw on the scans of Mason’s brain some changes and when she didn’t bring them up I did

ME: “Have his ventricles started backing up with fluid?  They look a lot different than 4 weeks ago.”

Ultrasound Lady: “Um, I don’t know.  They do look a bit big but it could be normal.  I guess I should go look at your last measurements and let the perinatologist know.”

Duh.  Why take measurements if you’re not going to use them?

A few minutes later in comes one of the perinatologists I’ve seen before, one I like because he knows all about SB and the issues we’re looking at.  Dr. M confirmed what I thought. Mason has begun to develop hydrocephalus.  This is NOT good.  It’s not totally unexpected but we had hoped it would not happen this soon. 

Basically, we’ll have to monitor how fast the fluid backs up and choose a delivery date that lets Mason get as close to full term as we can without jeopardizing his brain with too much swelling.  We’re probably looking at a premature delivery unless God intervenes.  Right now we go back in 3 weeks.  Instead of our goal being January our goal is just 36 weeks.  Every day counts at this point.  Every day closer to 36 weeks means more maturity and a healthier start for Mason.

If his fluid has increased like it did this last time we’ll be having a December baby.  He’ll be premature.  He may not be able to breath on his own.  And within 48 hours he’ll undergo a double surgery – closing up his back/spine plus brain surgery to place a permanent shunt to drain the extra fluid. 

Oh, and lest things be easy, there’s another wrench in the works.  This week Mason decided to turn breech.  While that does not usually matter if you’re doing a c-section, in Mason’s case it does.  His head is up by my ribs, his butt, legs, and back are not.  In a typical c-section the doctor cuts your skin horizontally down near your pubic bone AND cuts your uterus horizontally.  If Mason is breech that would mean they would be grabbing and pulling right on his back and open spine.  Not safe. 

To avoid that if Mason stays breech the incision in my uterus itself will be vertical, to give them more room to get him out and other places on his body to grab onto.  A vertical incision means I can never again go into labor.  All other pregnancies must end in a c-section to avoid a very real possibility of uterine rupture, which often ends in a dead baby and possibly a dead mommy. 

The good news is everything else looks great.  Mason is growing on target, we could see him practicing his breathing on ultrasound, and he’s still got some time before we’ll be forced into delivery by the hydrocephalus.

Other good news – my perinatologist heard my frustrations with the OB and offered to put me on his delivery list.  In other words, someone who really knows what he’s doing and has delivered other babies with SB will deliver my baby unless something crazy happens.  He even gave me his email and phone number if we need to reach him at off hours (like if I go into labor).

How I’m Feeling:

Physically I’m hurting.  I knew Mason had turned breech before I went in because the last three days I’ve been in pain from his new position.  It’s a mix of back pain and sciatic nerve pain.  It’s not my favorite part of pregnancy but it’s manageable.  One blessing from the breech position was they could get a really good look at the ventricles in his brain today, which is important in measuring his fluid backup.

Emotionally I’m still in a bit of a shock.  Having a baby in three weeks is not something I want but it is a big possibility now.  Having a premature baby is now the most likely scenario.  That means so many things will be harder – his recovery from surgeries, breathing(he probably won’t be able to breath on his own), how long he’ll be in the hospital.  My recovery will be harder if he stays breech too, a vertical incision heals slower.  I was really hoping we could avoid hydrocephalus until after he was born, but God’s got a different plan.

I’m crying if I think about it too much.  It’s getting so close and there is no way to be ready for something like this.  There are so many things I would not have chosen in this path God put us on.  And yet there is still peace.  I know Mason’s life is exactly what God has planned and that none of these developments are taking Him by surprise.  I may be the last one to know the plan, but in all honesty I don’t need to know the plan I just need to let God take care of the details. 

18 comments:

  1. I am praying for you and for baby Mason.

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  2. Oh Tristan I don't have anything to say except MY FAMILY IS PRAYING AND WE HAVE YOU ON MY PRAYER LIST... I know my God can do wonderful things and lets just keep praying and having faith together!! I love ya and Im so sorry this is something thats coming in your path... XOXO

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  3. Praying for you and baby Mason.

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  4. Tristan, you are one strong and courageous woman and mama. Stay strong. You can do this! Praying for strength and peace for you, and a healthy baby born in Father's perfect time and a safe delivery.

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  5. Hi Tristan, your strength & trust in the Lord in this difficult time has truly been an inspiration to me. I pray for your safe delivery & for Mason's good health.

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  6. YOU are amazing! Your family is amazing! Keep the faith!

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  7. {{{{{{HUGS!}}}}}} I'm so sorry for all the heartache right now! (And especially for the frustration with ignorant "professionals!") You and your family are in my prayers-- especially little Mason.

    I pray that you and your husband will continue to have the peace from the Lord that you need through this time.

    Love,
    Rachel

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  8. Hugs Tristan! I am glad that the delivery will be done with someone that knows what they are doing....

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  9. Heavenly Father does demand that we move forward with faith, doesn't He?!?! He's sure giving you the opportunity to practice!! I've had seasons just like this. You and Mason will be in my prayers--prayers for good health and competent medical care and continuing peace.

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  10. I'm praying, too. I'm glad your peri will do your section. Thank you for your updates and the privilege to pray for you and Mason.

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  11. Oh Tristan, I am so sorry for the heartache and anxiety and must feel. You are so on top of everything, you must feel totally overwhelmed right now. Hugs and prayers for you.

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  12. Tristan ~ I would be crying a lot, too. I so admire your faith, strength, and tenacity. That OB WAS a dumb lady. I am so proud you advocated for yourself and Mason.

    You know I am praying for all of you. So many unknowns and scary scenarios, but we know God is in control.

    Hugs!

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  13. How frustrating with the OB! I'm glad you are seeing someone you can trust, and on their list now. Is Mason more at risk of breathing troubles because of his condition? If he is not, please do not be anxious about his breathing if he is born at 36 weeks. My third baby (otherwise healthy) was born at 35 weeks unexpectedly and I was so anxious about his breathing. Several friends reassured me that their babies at that gestation had no breathing troubles, and I just wanted to pass that reassurance on to you, if it applies to Mason - my little one breathed and cried as a full term newborn right from the start. If Mason is practising his breathing already he is maturing his lungs well! :) I am praying for him, and for you. I hope he will turn round and have no worsening with the hydrocephalus when you go back!

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  14. You are so strong, and a true inspiration with your faith and honesty. You guys are in our prayers. Do you know if they are planning on doing steroid shots to help mature his lungs or is that something they can't do given your circumstances?

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  15. It looks as though you have plenty of online support! Many of these people may be "virtual friends", but they are friends nonetheless.

    Please know that even those of us who have never met you will be praying for you and your baby.

    We'll also be remembering your family (the other siblings are still around, right? lol).

    We'll pray for your husband because once your baby is born, his job description will be very different.

    Know that as a Relief Society President myself, I would want to stay very informed of your progress. I would want updates and I would want a very open and candid dialogue so that when the needs arise (and they will arise), we will know exactly what to do because we've been planning all along. That is what ward families are for. That is what Relief Society is for...we are a family...we have a sisterhood...and we help each other. Please keep your ward family in the loop.

    Many blessings your way!!

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  16. I just said a prayer for you and shed some tears for you. I'm sure things will work out, but life sure stinks sometimes. Hugs and love.

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  17. They never mentioned looking for hydro while Z was still in my stomach, never. I had 15 ultrasounds total because of monitoring his growth (they thought he was underweight until he was born 8lbs 1oz) & never a peep about pre-birth hydro. Interesting.

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