Thursday, October 11, 2012

All About Evan

Thank you for your prayers for Evan! We continue getting good news about his progress; clearly, the prayers are being answered and we couldn't be more grateful parents. I promised more details about my child. Here they are in full force:
Evan has a mess of dark, (dare I say curly), hair on his head and a bit of lighter hair on his shoulders--typical for preemies--he'll lose it later. He has not opened his eyes yet. His upper lip sticks out a bit from his bottom lip and he has a dimple in his chin, just like daddy. His head is a little pointy on top, not quite as rounded as most c-section babies. His fontanelle is still soft which indicates there is not yet too much pressure from the extra fluid in his brain. He'll continue to be monitored by Neurologists for head circumference and fontanelle tenderness over the next few weeks (and his whole life, really) to know how his head is handling the excess fluid. 

Evan was taking a little longer than he should to "pink up" after he was born so he was hooked up to an oxygen mask over his nose (CPAP) for the first day to help his lungs expand. Most of the time the added oxygen goes into his lungs but occasionally it goes into his stomach and can cause cramping. He was given a tube down his mouth and into his stomach to filter out this oxygen. He was changed to a less-invasive nasal oxygen tube on Tuesday night and did so well he was taken off all oxygen support on Wednesday night and continues to breath strong on his own. He has a puny cry and the cutest girly squeal when he gets upset. He still gets the hiccups a lot.

Evan was given an IV in his hand for nutrition since he couldn't start feeding until the CPAP was removed. On Wednesday the pediatricians wanted to start real feedings so I attempted breastfeeding. I didn't expect Evan to be so strong at the beginning but it looks like he takes after his daddy's appetite and is quite the sucker, though he tires quickly. To supplement his feedings he has a tiny tube down his nose and into his stomach and he gets fed some formula through there. Once he can adapt to a full diet of breast milk he'll get the IV and feeding tube removed.

Evan has "leads" all over his body to monitor his heart rate, respirations, and oxygen saturation. He doesn't like getting his temperature (ducky thermometer stuck up his armpit) or his blood pressure checked. He is cathed along with his diaper changes. For now we're told he mostly empties his bladder on his own. He will continue to be followed by Urologists who will eventually complete a full urodynamics test to see how well his bladder functions and to know how much we'll need to cath him when we get home. Many, many people with Spina Bifida use catheters and I've heard this is actually a really simple aspect of Spina Bifida to deal with.

Evan's surgery site on his back is healing well. There is about an inch of stitches and then a skin patch about the size of a silver dollar. The goal is for his skin to close over the patch. Until that happens he's being watched by Neurosurgeons to make sure the patch doesn't open up, leak fluid, or get infected. If this happens he'll have an additional minor surgery to close up the skin. For now the area is covered with gauze that gets changed 3 times a day. His pillow is designed to keep him on his side to avoid pressure on his back while it continues to heal.

Evan flinches whenever he's touched. His legs flail and his toes flare out. Both of his feet are turned inwards just enough to classify them as clubbed. We'll work with Orthopedic Surgeons and Physical Therapists to determine if he'll need casts or just stretching/exercises to straighten them.

As if infants aren't hard enough to hold, Evan is especially tricky since you can't put too much pressure on his lower back yet and he has tubes all over that get caught and tangled. I feel a little silly asking for help but the nurses are excellent with getting him out of his bed and into my arms.When I fed him I accidentally stripped off some of his monitors and his oxygen tube. I'm sure I'll get better and I'm sure it'll get easier when he gets his tubes removed. Grandma finally got to hold Evan for 10 minutes before she left on Wednesday. She couldn't get enough of the little guy and I can't blame her--he is quite a cutie.


  1. I'm so glad that he is doing well right now! He is so darling Jenna. Congratulations to you and Isaiah. How much longer will you need to be in the hospital in SF with him?

    1. That's the million dollar question! After a week we'll have a better idea of his progress and how much longer we have here. If everything continues smoothly I imagine we'll be home before Halloween. :)

  2. Congratulations!!! He is so cute!! I can not believe all that hair!

  3. He's adorable. It sounds like you're already adjusting to life with a newborn. Congrats.

  4. Yeah for new babies! I can't believe you had an almost 6 lb baby, you were tiny and looked great! We are praying for all to continue to go well!

  5. He is so so cute! What a handsome little guy. Summer was sitting here with me looking at the pictures and she was saying 'look mom! It's a baby! Just like Austin! His ear is like Austin and his skin is like Austin's.' :) So true... he's as precious as any baby ever. And look at you little Mama! You look wonderful!! How are you holding up? I can only imagine it's all a bit overwhelming right now. Just remember how much you are loved and we're all here for you... even across many miles. Love you tons!!!

  6. Congratulations guys! He is such a doll. We can't wait to meet him. Love his name too!