Update

Faith's surgery lasted over 5 hours.  Her NeuroSurgeon was able to 'put a hole in the cyst' that was pressing on her brain stem.  Everything was going well until the end of the surgery when her brain swelled temporarily and then went back down on its own.  They don't know why this happend or what affect it will have.  We just have to wait and see.  She had a bad night and day after surgery. She was very uncomfortable and in a lot of pain.  Her blood count was low and she had to have a transfusion.  She had an MRI of her brain and spine yesterday that was 2 hours long so she had to be intubated for that.  She did very well and was able to be extubated right away.  We are still waiting to get those results.  She had a good night last night and started eating some.  Today, she is just getting tylenol for pain and not eating much and sleeping alot.  This is to be expected after the rough few days she has had.  She is still in the ICU but is doing well.  Hopefully we will be able to take her home in a few days but no word on that yet.  Thank you for all of your prayers and support. 

Good News and Not So Good News

The results of Faith's MRI were both good and not so good.  The good news is that she has more brain tissue than her last MRI showed.  We are very pleased and thankful for that.  The bad news is that she has a cyst pushing on her brain stem.  Your brain stem is responsible for basic vital functions like breathing, heart beat, and blood pressure.  Thankfully, Faith is not having any symptoms but they could come on very slowly or very quickly.  We have decided to go ahead with surgery and it is scheduled for this week Thursday.  She will be cleared by her Pediatrician tomorrow, a head ultrasound on Wednesday, and surgery is scheduled for 7:30 am on Thursday.  Her Neurosurgeon will attempt to poke a hole in the cyst and her current shunt will take care of the fluid that drains out.  If he is unable to do that, he will place a shunt on the back of her head that drains the fluid from the cyst.  This will be the 7th operation that is brain related and is the riskiest to date.  Your continued support and prayers are appreciated!

Jewels "babysitting" Faith

taken June 18, 2012

Being Such a Good Girl as I wait to have MRI

taken June 18, 2012

What have we been up to this past month?

This past month has been good but busy.  Faith's potassium level is under control with diet and medication.  She is having blood work and seeing her Nephrologist (kidney doctor) once a month now.  She had an MRI on Monday which was ordered only because it is routine so they can see how things look now.  Her MRI could not have went more smoothly.  She tolerated not eating or sleeping very well. She had AWESOME Nurse Sue who took such good care of her and Mommy and Grandma Smith too!  She has an appointment with her Neurosurgeon to discuss the MRI tomorrow.   Next week she has an  ultrasound and visit with her Urologist for a follow up.  Hopefully he will give us a better idea when her reconstructive surgery to correct her Colostomy (stool), Vaginostomy (vagina), and Vesicostomy (urine).  July will be another busy month of appointments. 


We are very pleased with Faith's progress.  She is doing better than we imagined.  She has just started rolling over from her stomach to her back.  Yesterday before her MRI she rolled from her back to her side.  She has lots of happy time lately and we are loving it!

6 months old

taken June 5, 2012

Helping Mommy do laundry

taken May 31, 2012

Hi Everybody!

taken on May 28, 2012

6 Month Pictures!

Faith is 6 months old already!  Here is a preview of her pictures taken by her fabulous Aunt Amy!
http://www.acarrollphotography.net/2012/06/baby-faith-6-months/

Still Home and Doing Very Well

Faith's last hospital stay was the shortest stay to date.  We were there for literally 24 hours.  We are so thankful they were able to get her potassium down and stable so we could get back home.  Helen DeVos Children's Hospital and their staff are great but there is no place like home!  Faith has been doing very well since coming home 2 weeks ago.  She is sleeping so much better and goes down very easily most of the time.  She is a much happier baby because she is feeling good.  She is having lots of happy awake time and loves to play.  She loves to be talked to, read to, and sang to.  She is cooing and smiling a lot these days.  This all makes for a much happier Mommy and Daddy!  We still feel like we are recovering from the last 5 months of hospital stays, doctors appointments, and very little sleep but feel like each day things are getting little better.  Faith still has quite a few appointments but not as many each week.  She has physical therapy and occupational therapy both once a week for an hour each.  A visiting nurse comes to weigh her, check her vitals, and check on her once a week.  About once a week we have a visit downtown to one of her various specialist who each like to see her about once a month.  She was having to have blood work done every few days before her hospital stay.  Now that her potassium level is good, she only has to have it done every other week.  Once the level stays good consistently, she should only have to have it done once a month.  We are hopeful that her level will stay stable so she doesn't have to have blood work so often.  They have a hard drawing her blood and it is not a fun experience for anyone involved.  She is such a little trooper!!!
Love and Hugs,
The Sunde's