times a tickin'

Quick Summary:

36 weeks pregnant

Dahlia has myelomeningocele Spina Bifida which is the most severe type. Her spine isn't closed and nerves are being exposed to amniotic fluid while spinal fluid is leaking.

She wasn't a candidate for fetal surgery b/c nerve damage had been done already (which obviously can not be reversed) and also b/c they didn't see significant hind brain herniation which is a good thing
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We decided to go to Vanderbilt and have a post natal surgery to close her spine... the best ever, Dr. Brody is coming with (BLESS him).

Potential affects:
Myelomeningocele will affect her motor skills. It isn't likely to affect anything cognitive. Motor skills being movement and function below the lesion. Her lesion is at L4/L5 which is great as it is super low on her spine.

She will possibly have hydrocephalus; however, her brain ventricles are dilated minimally and WE PRAY she doesn't have it. If she does, we pray it won't present right away and a procedure can be done several weeks out. We are opting in to do an ECV procedure instead of a shunt ONLY if we have to.

Her left kidney is severely dilated which the urologist thinks is actually due to the spina bifida -good thing in my eyes. The "meat" of the kidney looks good and she is producing plenty of fluid. This could be due to bladder nerves being injured but he doesn't think it's a separate issue. We won't know until she is here what her bladder and bowel function will be.

Her feet and severely clubbed and will be casted once she's born for 6 weeks. She will have her casts cut off weekly in Chattanooga and replaced. If casting isn't successful we will go to an achilles procedure that is done in office at Vanderbilt and then move to bracing if needed. We are unsure of what her leg/ankle/foot function will be. Typically the location of the lesion means damage to the ankle, which we can see in the clubbing. L3 usually affects the flexion and extension of the knee, we think hers WONT be affected.. we pray.

The last Ultrasound showed her weighing 5lb 14 oz (AWESOME!- we need to fatten her up for surgery). She has lots of hair, her daddy's chin and cheeks waiting to be kissed. They want to do an EKG of her heart again as they can't tell if her aorta is narrow or normal. I'm choosing not to even think about this.


So I met a 30 year old man who has myelomeningocele in his thoracic region- neck and his story is a tough one to hear. One thing I hold on to...he told me that they refer to this as a "Snowflake Effect" that every child is completely different. Most of what we know is this: WE WONT KNOW UNTIL SHE GETS HERE. Like all day.

Here is the plan: The whole family goes to Nashville on July 19 to be near incase I go into labor. The C-section is scheduled for July 25 @ 9:00 am (A Wednesday). Dollie will have her spine closed over the next two days. An ultrasound of her brain will be done to see if her ventricles have dilated anymore and if her soft spot feels ok or if there is built up pressure in her head (all signs of hydrocephalus). If she doesn't present with hydrocephalus she will remain in the NICU until her wound heals, she will be checked out by urology, neuro, ortho, and the neonatologist to make sure her respiratory is ok, she is eating, and nothing else looks crazy.

Something I didn't know- Once I have the C-section, she will quickly be whisked away to the NICU. Adam will go with her, Cielito will be with me. I wont be able to go see her until my spinal tap wears off... pretty nervous about this small time frame. We won't be able to hold her, or nurse her, she will stay in an "incubator" until her wound is cleared. We will get to snuggle her and sing to her while she is in the NICU and I will pump milk during that time.

I wish I could explain to her that it will all be over soon and WHY we are having to do this.

Mama bear is so so so real. I have never gotten in a fight and would likely run if someone tried to hit me... if it were my kids, I could murder a 600 lb Hulk with my bare hands. Something just kicks in and you see red... you will do WHATEVER it takes to protect your babies. I wonder what it's going to be like to hear my baby cry and not be able to grab her, rock her, nurse her, shhh her... this is what I fear most.

I am so glad that she will be at Vanderbilt and that she will be in the NICU being watched so much more closely than my eyes could possibly do. I'm so thankful that I will be able to recover after having a C-section and that I will have friends to love on me.

I'm not scared about her well being. I know she is going to be right where she needs to be. The best care. The best hands. The best trained. The most experienced. They can do this in their sleep. I'm not worried about a C-section, the pain, recovery, limitations. I'll follow instructions, and I'll pull up my big girl pants and do just fine.

I just wish I could give her an explanation. I didn't do this to her. I would take it from her. I don't want to hurt her. I will never abandon her. She isn't alone. She is going to be ok.

The feeling of when your child falls and scrapes their knee, you rush over to sweep them up. They need YOU. You kiss their bloody knee, clean it off, get a princess band aid and some neosporin, they can sit and snuggle with you as long as they need to stop the tears. You stop everything in that moment to love your sweet innocent vulnerable baby... to ease the pain, to love harder than you ever have.

I wish I could sweep her up right away and explain.

Soon enough baby Doll, 3 weeks until we meet you, 3.5 until I hold you. You are already such an inspiration.

Asking for prayers for all possible medical scenarios to run smoothly. For God to have His healing hand on that sweet baby. For her to have strength, for me to have courage.
xoxo