Thursday, November 17, 2011

Jumpin' for Joy!

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Can you believe it?! Before Emma was born we didn't know if she'd have any mobility in her legs or feet... Just look at her go! (Shawn and I are jumpin' for joy, too!!) She is such a miracle. Last week her doctor started her on regular calorie formula because she's gaining weight so well. In fact, he even said she was "pudgy". Who knew that could fell like such a compliment! :) Also, the other day we were at the dentist and a complete stranger who had no clue of her past said, "She looks so healthy!" I just smiled and thanked her, but inside I was beaming. I could've never imagined that by the time Emma was almost 8 months old she would be just like any other baby. There is always the worry that her shunt might clog or that her ankles and feet may not work just right when she gets older, but all is well. In fact, her physical therapist was very impressed with her ankles. When she puts her weight on them while we hold her up they stay nice and straight without rolling or collapsing.


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Oh my gosh, talk about kisses that just melt your heart.



Look what I can do mom!



This is an outfit I wore when I was a baby.



For the love of food!!



Our little lady bug.

Friday, September 23, 2011

No More Feeding Tube!!!!!!

Hooray for Emma! Today is her 6 month birthday and there is so much to celebrate! She was eating so well that on August 15th we took her feeding tube out for a 2 week trial run. Now, almost 6 weeks later, she's still going strong! Her weight gain hasn't been consistently an ounce a day like her pediatrician Dr. Terashima would like, but at least she hasn't lost weight. I tell you what, it is sure nice to not have to always worry about her pulling it out (especially now that she is a lot more coordinated with her hands) or it getting wrapped around her neck, or catching the end in chairs when you stand up, etc, etc... Not to mention how nice it is to not have to wash all the syringes. I finally took the back-up tube and face tape out of her diaper bag yesterday and it was so liberating! She is still on a higher calorie formula for now (27 cal.) but we hope to slowly back it down to the normal 20 cal.

Dr. Garnreiter, Emma's cardiologist at Primary Children's, saw her 2 weeks ago and said that her heart murmur (VSD) is still there but continues to improve. He took her off the Lasix which was her only medicine at this point... No more medications to keep track of (another HOORAY)! We won't need to go back to cardiology until she's a year old. :)

Emma's shunt incisions have healed beautifully and it continues to work properly. She scratches at it a lot on the side of her head and when I asked the neurosurgeon about it he said that is very common because it itches while it's still healing. I asked my dad if his shunt itches and he says that it does and he has to rub it. Poor little thing, I just keep her finger nails trimmed and hope she doesn't scratch it too hard.

Developmentally she is right on track according to Susan the physical therapist. We couldn't be more thrilled that the spina bifida itself has had such a relatively small impact on her motor skills... We will know more as she gets older if it will impact her ability to walk, but things are looking good. Below is a picture of her learning to sit up that I took 2 weeks ago.

Our Little Aggie

Sweet girl, 5 months old.

On to bigger and better (I think) things, like rice cereal...

...and sweet potatoes!!


I love to see those tiny toes wiggle against all odds!

Learning to sit up!

Now that takes some skill.

Sunday, July 31, 2011

Shunt Surgery - July 19, 2011

Emma's shunt surgery went really well. The hardest part for Shawn and I was as she was comming out of surgery, She was really disoriented still from the anesthesia. She looked so confused and when she started to cry her voice was really hoarse from the breathing tube that had made her throat raw. Hardly any sound came out at all and it was heart wrenching. She had a brief allergic reaction to either the Betadine or Lortab, but the recovery went well otherwise. I was able to stay in her room overnight and we were home by 12:30 the next afternoon. The only pain medication she had been on was Tylenol and she was doing great... Until about an hour after we got home. Then the crying (screaming) began. We finally were able to get her some Percocet at 11:00pm and she was finally able to get some rest. The surgery involved two incisions on her head and one on her tummy (the fluid drains down a tube into her abdomen where it is absorbed). She will need the shunt for the rest of her life. Unfortunately they tend to plug up and malfunction and she may need to have it replaced anywhere from 5 times in the first year to once in 5 years, we'll hope for the latter. She is doing great now, almost two weeks later. We have noticed a big improvement in her hand/eye coordination and overall development, she smiles a lot more and has even started to laugh! :)


Ok, It's just sad that they have hospital gowns that small.




With G-ma and G-pa Vernon post surgery.



Emma and Grandpa are now "shunt buddies". You can see the drainage tube under her skin running down the right side of her head.



Luckily they only needed to shave a small section of hair.


Daddy is funny!

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Monday, July 18, 2011

An Eventful Day

We met with Emma's Neurosurgeon today at Primary Children's. She hasn't thrown up for a few days... but she is in pain. She has serious crying (screaming) fits through out the day for anywhere from 20 min to 2 and a half hours. At night she either sleeps for eight hours straight from exhaustion or fusses every hour. It's so hard to know what the problem is with any baby who cries so we have been trying everything under the sun from different formulas to gas medication with no success but were still confused since she hasn't been showing some of the "classic" signs of hydrocephalus (being unable to look up, rapid increase of head circumference, etc.). The neurosurgeon ordered another CT scan to compare with the one we had done in April and I took a picture of the computer screen comparing the two (see below).

Her second CT scan at almost 4 months old.


Looking at a cross section of Emma's brain from above, the dark shapes in the center are the ventricals that have spinal fluid built up in them. The image on the right was on April 23rd and on the left July 18th (today).
She is scheduled for surgery to get a shunt at 8:15 tomorrow morning. I'm nervous about her having to go through the surgery, but can't handle another minute of seeing her in pain and not being able to comfort her. I just hope it helps.

Tuesday, July 12, 2011

The Journey Continues

Emma is doing so well overall. I can't believe she'll be 4 months old in a week and a half! She still hasn't needed to get a shunt and the hole in her heart continues to close on its own. Also, her kidneys are completely better and we only have to give her one medicine once a day for her heart rather than four medicines multiple times a day. Unfortunately she has been sick for the last five days with an upset stomach, the poor thing. :( We're going to the doctor again this afternoon.

Our little skittle.

That frown absolutely KILLS me!

Getting fed by cousin Christsia at Snowbird.

Just a small sample of the never ending things I get to wash all day long. :)

Who knew that it could be so bright outside even when you're in the shade? We had her feeding tube out for six days but she didn't gain enough weight so we had to put it back in. :(
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Apparently her Uncle Justin can speak her language really well!
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Friday, May 13, 2011

Three Weeks of Being Home

After just 3 days home we got to visit the ER. She was eating very little and crying a lot and her head measurement was bigger. It was a Saturday and our pediatrician said we had better take her in. We were there for 3 lovely hours trying to keep her happy while keeping her from eating just in case they needed to do the surgery. They wrapped her tight in a blankie and strapped her down for a CAT scan. The noisy huge machine rotated around her head and she just laid there perfectly still and sucked on her binky, what a good girl!! The results came back and her ventricles were enlarged a little bit but still not enough to do the shunt surgery. It gave us peace of mind to know that her head was still okay, it must've just been a bad day. What a guessing game!!

Snuggles with daddy in the ER



Emma had a 4 hour long appointment at the spina bifida clinic at Primary's last Friday the 6th. We saw about 10 different doctors and specialists at the SB clinic and it was all really informative. They all loved to see how well she is doing. Our most exciting news is that since her kidneys and bladder look great, the Urologist says we no longer have to cath her once a day. HOORAY!! Also, her head circumference is following a stable growth curve so we still don't need a shunt yet, they'll check that again in 3 weeks.


Ahhh, breakfast in bed.

Cutie Pie!!

First Easter

Meeting Great Grandpa Yates for the first time... He passed away two days later, we will miss him!

First stroller ride, I'm not so sure about the cool breeze and bright sun!


We had an appointment with the cardiologist yesterday, after doing a heart ultrasound and an EKG (see picture below) we learned that the hole in her heart is getting slightly smaller!!! The doctor is hopeful that it will close on its own, we are SO excited! Her fast breathing and fatigue while eating will slowly improve as her heart does and she'll get better at eating by mouth with time.

We thought she had gone wireless, I guess not!

Wednesday, April 20, 2011

HOME AT LAST!!!!

Emma has upgraded to wireless!!

We finally get to dress her in her very own clothes. :)

The rainy drive home, she slept the whole way.

In her nursery at last.

"Nurse Julie" getting all her evening medications ready. (Don't worry... those are just syringes to put into her feeding tube, not needles for shots!)

Shawn and I have had permanent smiles all day long. We have loved having Emma home with us ALL DAY (well, we got discharged from Primary Children's at about noon). Yes, now the hard part of taking the night shifts begins, but bring it on. Luckily my mom is staying with us for a few days to help. I've got lots of follow-up appointments scheduled with each of Emma's many doctors so that they can continue to monitor her progress, meanwhile we'll just keep doing what we have been doing pretty much -minus the hospital! Unfortunately we still can't have anyone under 18 years old hold her yet since it's still RSV season and we have to be VERY careful that she doesn't get sick, especially before her shunt surgery which may or may not be in a couple of weeks. Because of all that our sweet girl has been through these last four weeks and all of her internal problems (heart, lungs, brain fluid, spine, etc.) she is very susceptible to getting sick. The last thing we want is for her to head right back to the hospital.

Well, I will still probably post when we find out when her surgery will be or if there are any other major changes... and of course to share extra cute pictures. Otherwise, this will probably be the last of the frequent updates. Once again, we cannot thank everyone enough for your unending love, prayers, and support!!

Sunday, April 17, 2011

"Look Ma, no tube!"

RAWRRR!!!

Cute as a button!

Emma got to take a little break from her feeding tube being in her nose (and throat, and stomach). I got to learn how to put a new tube in... pretty crazy! Yes, she really hated it but I can't say blame her. I wish she would eat all her food so we could just leave it out, at least she's getting a little better at it.

So fun to see here cute little face with no tube. Hopefully she won't need it for too much longer.



Saturday, April 16, 2011

We Wish We Knew!

When is she coming home? Is she getting a shunt? When is she going to get a shunt? Will they send her home with a feeding tube? These are the questions that we seem to get asked everyday. We wish we knew! Heck...we wish the doctors knew! What we do know is that her head circumference is half a centimeter larger. The results from the head ultrasound showed that her ventricles are slightly enlarged, but not enlarged enough to put in a shunt yet. The neurosurgeons will hopefully have more news for us on Monday. If they wait to do the shunt and if she continues to gain weight they might send her home at the end of next week. Everyone cross your fingers!
"It's fun to be me!"

It is so hard to leave her at night, especially when she is wide awake and being such a good girl. We resorted to using her musical light-up toy to entertain her while we snuck away so she didn't feel like she was being ditched. It was still hard to leave!

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Wednesday, April 13, 2011

And the Waiting Continues

Apparently the conference of doctors today was only for the cardiologists rather that all of Emma's doctors. They must not have decided on doing anything different with her heart right now than to wait until her hydrocephalus is under control, they never came and gave me more news. Friday she'll get another head ultrasound done.

Emma LOVED to hear Grandpa Vernon whistle like a little birdie.

Great big smiles for grandpa.

Rub a dub dub, cute girl in a tub!

All clean and warm.

A priceless snuggle moment. :)