Evan's Heart and Hip

Here I am complaining about my situation, and then I take a look at my son:

EKG

Echocardiogram

Pavlik Harness

I'll explain.

Recently Evan started having episodes of supraventricular tachycardia (SVT) where his heart rate gets really high--like 280 beats per minute. At first they were sporadic, short-lived, and he came out of them on his own. The docs tested his electrolytes and gave him an echocardiogram and EKG. Everything came back normal so they decided to postpone treatment. Then when I came in 2 days ago I found out he had a 15 minute episode of SVT and didn't come out of it until ice was placed on his forehead. All day he continued having short SVTs. His nurse had to encourage him out of them with ice or by shoving a tube down his throat. It was not looking good. She called in the Docs. They called in Cardiology. They hooked Evan up to a 12-lead EKG to track one of his episodes. They did another test of his electrolytes. Everything still looked normal except that he's still having these SVTs. The docs decided to start Evan on a heart medication and he has not had a single SVT since.

Next:

Evan has a dislocated left hip which is fairly commonly associated with Spina Bifida. He gets to wear this lovely skydiving suit that puts his hip closer to the socket in hopes of relocating the hip. Right now he wears it for 12 hours on/12 hours off. When we go home he'll wear it for 22 hours a day. When he's 4 weeks old we'll have a follow-up hip ultrasound to see if the hip is relocated. If it's not relocated, Evan will get a more rigid cast of some sorts to make sure his hip is in place correctly. Super annoying, yes, but it's nice that this is a fixable problem and it's definitely better to fix his hip while he can't walk anyway.

The good news is amidst all these new complications...Evan is eating!! No tube feeds for almost 2 days. Go Evan!

The NICU

Here's a typical post I might write about our experience so far in the Neonatal Intensive Care Unit (NICU):

Evan is progressing, even if it's slow and some days are a step back. When he was first born he only ate for about 5 minutes before falling asleep but now he usually lasts about 15 minutes. His record was 25 minutes--what a champ! The nurses are so encouraging with each feeding and they give us hope that some day we'll go home and forget this whole experience. Sometimes its annoying when the other babies in Evan's room are crying and he's trying to sleep but it's also nice to share a room with other parents who can relate with my experience. All of our babies have their own challenges and we all work together to stay positive. I think Evan has the most doctor visits. He is followed by urology, neurology, neurosurgery, neonatology, cardiology, othopediatry, occupational therapy, physical therapy...

and yet the only reason we're staying in the NICU is because he won't eat on his own.

Here's how I really feel about the NICU right now:

It really stinks to be a brand new mother who is away from her husband while trying to raise her child under the control of demanding doctors and nurses. I wish I could hold my son without fear of pulling off the wire monitors he's connected to. I feel badly when Evan is subjected to seemingly constant pushing and rubbing and blood draws. I cried the first time I had to change the dressing on his back because the tape was pulling his sensitive skin and he was squirming, kicking, and crying. It pains me to leave Evan at night, especially when he's laying in bed with his eyes wide open. I don't trust all of the nurses here. I wish I had control of my son's care. I don't always have a positive attitude about my trials. Right now I just wanna go home.

Mr. Evan

Evan and I had a little photo shoot with Jana Eliason today. She did SUCH a great job helping us document this precious time while Evan is a newborn. He is definitely his father's son, don'tcha think?

 

October 14, 2012

Today Evan is 5 days old and would be 35 weeks if  he was still in utero. He acts just like a 35 week old baby should. He sleeps a LOT and cries very little. He is learning how to suck, swallow, and breathe all at once. He kinda stinks at eating. But it's okay! He's getting better every day. I keep telling him the sooner he learns to eat the sooner we go home, but he's the boss. I don't have an estimated date of departure. It's up to Evan.

What does Evan do all day?

He sleeps.

Then every 3 hours he repeats this routine:

Check temperature
Change diaper
Catheter
Try to eat
Fall asleep
Get fed through a tube
Cuddle with mama

Then he goes back to sleep.

The nurse started putting clothes on him today. They're just borrowed from the hospital so they're a little big but cute anyway. He opens his eyes open occasionally but only during his routine--which is not a good time to take pictures, sorry. He was sorta peeking his right eye open during this picture. Maybe we'll get an open-eyed picture next week when he's a little older and less sleepy.

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.

Evan Michael Hudson

Evan Michael Hudson, born October 9, 2012 at 10:15 am. 5lbs. 15 1/2 oz.  17 1/2 in. Details to come.

SF Baby Shower

All of the nicest ladies in the world live in the Sunset Ward in San Francisco. Knowing that I got "stuck" here in SF prior to having a real baby shower they threw me a baby shower here in my hospital room! **Keep in mind I didn't know any of these women prior to coming here for surgery 2 months ago. Since my room has limited space the shower was open-house style and it was complete with decorations and delicious food, all brought and prepared by these awesome ladies. The nurses found out we were having a shower so they requested a harpist to come entertain us while we were setting up. During the shower a 15-year old from the ward came with his mom and his cello and gave us another beautiful private serenade. This ward has shared their time, motherhood advice, and their love with me over the past 2 months and I could not be more grateful for being "stuck" in such a perfect place with such loving saints.

See the cute little poof ball hanging from the ceiling? There were 5 of them spread throughout the room.

There were labels and little "Baby Hudson" signs for all the food