Birthday Celebration #1 of ? 11/18/12

Faith will be turing 1 on December 5th.  This picture is from the first party that we had for her.

Lovin my new train 11/27/12

So Cute & So Happy! 11/27/12

Reading to Grandma Smith 11/13/12

11/4/12 - Waiting to be Discharged

11/2/12 - Surgery Day

Update

Surgery Tomorrow

Faith will be having surgery tomorrow at 10:10am to have a G-Tube placed.  She should be able to go home in 2 days.  The reasons she needs it is because her blood tests show signs of dehydration and she is falling off her growth curve.  She is still a peanut at just 15 lbs. 7½ oz.  People with kidney disease require 20-30% more intake and most Nephrology patients require a G-Tube.   

Here is Wikipedia's definition:
A gastric feeding tube (G-tube or "button") is a tube inserted through a small incision in the abdomen into the stomach and is used for long-term enteral nutrition. One type is the percutaneous endoscopic gastrostomy (PEG) tube which is placed endoscopically. The position of the endoscope can be visualized on the outside of the patient's abdomen because it contains a powerful light source. A needle is inserted through the abdomen, visualized within the stomach by the endoscope, and a suture passed through the needle is grasped by the endoscope and pulled up through the esophagus. The suture is then tied to the end of the PEG tube that will be external, and pulled back down through the esophagus, stomach, and out through the abdominal wall. The insertion takes about 20 minutes. The tube is kept within the stomach either by a balloon on its tip (which can be deflated) or by a retention dome which is wider than the tract of the tube.

Gastric feeding tubes are suitable for long-term use, though they sometimes need to be replaced if used long term. The G-tube can be useful where there is difficulty with swallowing because of neurologic or anatomic disorders (stroke, esophageal atresia, tracheoesophageal fistula), and to avoid the risk of aspiration pneumonia. However, in patients with advanced dementia or adult failure to thrive it does not decrease the risk of pneumonia.

 

MRI Results

 

The results from Faith's MRI were not what we had hoped for.  It showed that the cyst pressing on her brain stem is larger.  She had surgery to fenestrate (poke a hole in) it in July.  For some reason, the cyst is not draining.  She will most likely have to have another brain shunt placed that will drain the cyst.  The good news is that she has no symptoms (i.e. trouble breathing and/or swallowing).  They did order a Swallow Study but it could not be scheduled until December 27.  We hope that they have a cancellation or add appointment times so she can have that done much sooner. 

 

We are also very happy to say that the shunt she has now (which is the 3rd one they placed) has been in and working wonderfully since February 14!  Maybe the 3rd time is the charm! :)

 

She is doing very well otherwise and is a very happy little girl.  It is hard to believe that she will be 11 months old on Monday.  Please keep the support and prayers coming.

 

With Love and Appreciation,

The Sunde's

 

 

 

Our Adorable Butterfly!

How Time Flies!

It is so hard to believe that it has been 3 months since Faith had her last surgery.  We are so thankful for that and feel very blessed.  She has been doing so well these past few months.  She is still getting PT and OT each once a week and they are happy with her progress.  She is rolling around like crazy and loves to play.  She can sit on her own for a short amount of time so we are working on that a lot.  We are also working on crawling but she is not very interested.  She continues to learn new things and changes all the time.  She is very happy most of the time.  She smiles a lot and loves to blow bubbles and makes lots of sounds. She is a great sleeper at night and doesn't nap much during the day.  She is very curious about everything.  She is our little miracle and we couldn't be happier with her progress.  Thank you everyone for your prayers and keep 'em coming.  We greatly appreciate it.   

As if life wasn't busy enough for us, I went back to work in July.  We are all adjusting to it well.  Faith loves to play with Grandma Sunde and Grandma Smith on the days that Mommy works.

Hope all is well with everyone.  I will try to update more often.
With Love and Appreciation,
The Sunde's

Cousins 10/13/12

MRI 10/15/12

Happy before my MRI even though I am tired and hungry. It is a standard follow up to her surgery in July.

She did so great for her MRI and now we wait to get the results next week Wednesday 10/17/12.

Jewels and Faith 10/11/12

Cutie Pie! 9/28/12

This adorable picture was taken by my bestie, the fabulous Amy Carroll of Amy Carroll Photography

Getting So Big! 9/27/12

Carrots 9/20/12

Peas 9/11/12

Since cereal (oatmeal she hated rice) has been going so well, Faith's dietician from Nephrology (kidney doctor) said we could start introducing veggies and fruits. We started tonight with peas and she ate them right up! :)

How Cute Am I? 9/2/12

Faith & Jewels 8/28/12

Playing with Aunt Sammy 8/14/12

Taken by Aunt Sammy

Helping Mommmy do dished, it is never too early to start! - August 9, 2012

Loving my jumperoo now that I am big enough to go it in! - August 5, 2012

Eating Cereal for the 1st Time - August 2, 2012

Faith Camping - July 29, 2012

cute picture of Faith in the hospital 7/17/12

All is well!

We are all so glad to finally be back at home.  Faith is doing very well.  She is her happy little self and sleeping through the night.  This makes Mommy and Daddy very happy! 

She had a 6 month follow up appointment with her Neurologist who is very happy with her progress.  We are very sad that she is moving to Florida but wish her the very best.  She was playing with Faith and the toy she was using scared Faith.  This is the first time we have ever seen her scared. 

So many appointments for this little peanut but she just goes with the flow these days which makes it so much easier on us!

UPDATE 7/17/12

Tuesday 7/17/12
The results of Faith's CT were good. She was on bed rest/laying flat only so it is so nice to finally be able to hold her again. She has not had any vomiting in over 24 hours. We are still waiting for Neurosurgery to round on her and tell us the plan. We are hopeful she will go home today. She is mostly acting her normal, happy self and needing Tylenol occasionally.

Neurosurgery finally rounded on her and.... we are going home today!!!!

Good Morning!

Happy Girl!

UPDATES

Sunday 7/15/12

Faith had a good night. She was moved from the PICU to Peds today which means 1 step closer to home. She still is not eating great but good enough to have her central line out. She is Smiley and playing during her awake time. Getting to be more and more like herself each day. She could possibly go home tomorrow. Fingers crossed!

Faith had a good day. She is eating better but not great. She is doing all of the things she did before surgery and we are so thankful for that. We will get the results of her MRI tomorrow from her Neurosurgeon and find out when he will let us bring her home. She is sleeping soundly now so I better do the same. This place is exhausting!

Monday 7/16/12

Faith had a very good night. She woke up once to eat and needed some pain meds and is still sleeping! Waiting on her NeuroSurgeon to let us know the plan. Hope to see him soon but I won't hold my breath. :)

NeuroSurgery was just in to see Faith.  They are concerned that she has been vomitting the past few days.  She will have CT done today and go from there.  She will NOT be going home today.  :(

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

Admitted Again!

Faith has been doing well at home since she came home from the hospital.  She has been having her potassium checked periodically and it has been coming down.  Today her potassium was back up to the level it was when she was last admitted.  They called with these results and told us we had to bring her in right away to be admitted.  They are giving her treatments to bring the potassium down.  They have also changed her to a new formula concoction.  At this point, we do not know why her kidneys are not doing their job.  She should only have to be admitted for a few days.  Thank you for all of your love and support.

3 Month Pictures

A preview of Faith's 3 month pictures taken by my bestie, the fabulous Amy Carroll! We will treasure these forever! http://www.acarrollphotography.net/2012/03/baby-faith-3-months/

Faith with Jewels

Another Hospital Stay

Faith was admitted to the hospital again last week.  On Monday night she started acting very irritable and uncomfortable just like she did 2 weeks ago.  Her feedings gradually decreased and by late on Tuesday afternoon she didn't want to eat at all.  We thought she might have another bowel blockage because she was acting identically to what she did when she had one 2 weeks ago and was admitted for 2 days for this.  We took her to the ER at Helen DeVos Children's Hospital.  She did not have a blockage but had an extremely high potassium level.  This is a concern because it can cause heart and kidney problems.  It can also cause muscle pain and slow digestion.  Thankfully, both of her EKGs turned out good which means her heart was fine.  They were able to get the potassium level down with medication.  After 2 days she was sent home with a new medication to treat this and special formula.  She is not allowed to have breast milk any longer.  It is difficult for me that she is not able to have breast milk but at the same time I am glad to be able to quit pumping after over 4 months.  We have a  lot of breast milk in the freezer and plan to donate it to NICU babies! :)  Faith now has a new specialist to see, a Nephrologist (kidney doctor). 

Since coming home, Faith has been doing much better.  She is happy because she feels better!  She still likes to eat every 3-4 hours.  If we are lucky, we get a 5 hour stretch during the night.  She now weighs 11 lbs. 3 oz.  She just grew out of her 0-3months clothes because she is too long for them. 

Thank you for all of your love and support!

4 Months Old!

Faith will be 4 months old Thursday.  She was doing fairly well until this past Saturday night.  She was extremely fussy, inconsolable, and had a lot of swelling along her shunt tract.  Thankfully, her shunt was not infected!  She had a partial blockage in her bowel that worked itself out.  She did have to spend Saturday to Tuesday at Helen DeVos Children's Hospital.  We are thankful to be back home with her so soon.

Home 4 Weeks!

Faith has been home for 4 weeks.  She will be 15 weeks old (adjusted age = 10 weeks old) tomorrow.  As of this past Monday, she was still sleeping 3 hours at a time at the most and wanting to do it during the middle of the day.  On Friday night, she slept 4 hours straight from Midnight to 4 am.  Last night, she slept 6 hours straight from 10pm to 4am.  We woke up thinking something was very wrong but everything was just fine.  Wow, what a huge change in just a few days.  Here is to this continuing!  Sleeping so well at night makes her hungrier and less sleepy during the day time.  She is having a lot more happy awake time.  Mommy and Daddy are much happier too!  :)  Faith smiled in response to my smile for the first time yesterday and I cried with happiness.  She is now weighing 9 lbs. 11 oz.  She is definitely longer too because she out grew her newborn size clothes. 

Thank you for all of your love, support, and prayers.  Please leave us a comment!

With Love,
The Sunde's

Photos taken today by Aunt Sammy!

Photos 3/3/12

Look at those chubby cheeks! 3/1/12

Hmmmmm

Home for 3 Weeks!

Faith has been home for 3 weeks now.  In some ways it seems shorter but in others it seems longer especially at 6am when she hasn't let me sleep all night.  She will be 14 weeks old tomorrow.  Since she was 5 weeks early, her adjusted age is 9 weeks old.  Plus, we have to to take into consideration all the time she spent in the NICU/PICU.  So far, she is acting fairly appropriate for her age or maybe just a little bit behind.  She still has her days and nights mixed up.  After a week of keeping her up during the day as much as possible, we were all very cranky to say the least.  It did not do any good to wake her during the day and not let her sleep much.  She was still up all night, not eating well at all, and cranky all day and night.  She is also colicky and is cranky because of that during the night.  We are hoping and praying the colic passes very soon and once it does we will work on a schedule.  For now, I sleep during the day when she does and am up all night with her.  It is still very difficult to get much sleep because she has appointments in the afternoon when I need to be sleeping.  This week is going to be rough with an appointment each day Monday thru Thursday.  Thankfully 2 of the appointments are at our house but the other 2 are downtown.  It is going to be a busy, exhausting week!


Thank you for your continued support and prayers!
With Love,
The Sunde's

Enjoying a swing! 2/24/12

Time Flies!

It is hard to believe that as of tomorrow Faith will be home for 2 weeks already.  She turned 12 weeks old on Monday.  She is doing fine but has her days and nights mixed up.  We are working on fixing that!  :)  She has had several doctor appointments and they have no concerns.  Mommy was sick for a few days and quarantined to our bedroom but is starting to feel better now.  Daddy had to take a few days off from work and rely a little more on Grandma Sunde than usual.  Grandma Sunde and Grandma Smith have been helping out a lot!  Faith still has a lot of restrictions on visitors because if she gets sick, it will likely land her back in the hospital.  So, for now, only GrandParents are allowed to see her.  Once cold/flu season is over and she gets bigger and stronger, she will be able to have visitors and start meeting everyone!
Please continue to keep her in your thoughts and prayers.  We pray that her brain shunt continues to work properly for a very, very, very long time! 
With Love,
The Sunde's

Surgery went well

Faith's surgery today went well. She was off the ventilator right right after surgery. She was irritable after surgery and needed Tylenol and morphine to keep her comfortable.  She will be given antibiotics for a few days to eliminate any chance of infection.  We are praying that she has a good night!  If all goes well, she *should* be able to come home in the next week or so.




When she is older I am sure she is going to be mad at me about this picture.  They keep shaving spots of hair off of her head when the shunt is moved.  The first one was on the left, the second one was on the right, and this one is on the back.  So there is a unique shaped spot of hair in between. Before long she will have hair covering all of it and you won't even be able to see it.  We think that she is the most adorable baby ever no matter what her hair looks like!  Just look at that face! :)  She has the cutest nose I have ever seen!


Last night I read back through all of the blog posts since the first ultrasound at 20 weeks.  It has been a tough but also rewarding journey we have been on.  This journey has made us stronger individually, as a couple, and in our faith in God.  

We hope and pray that everyone we care about is doing well.  It is very difficult to keep up on every
thing going on with everyone when we can hardly keep up on the laundry! ;)


With Love,
Steve, Michele, & Faith Sunde

Surgery Tomorrow

Faith's EVD (external ventricular drain) is still not working but she is doing well despite that.  She will be having surgery tomorrow at 11am to remove the EVD and replace it with a VP Shunt (ventriculoperitoneal shunt).  Faith turned 10 weeks old today and tomorrow will be her 8th surgery.   She has been through more in 10 weeks then most of us do in our entire life.  She is a strong little fighter!  This is the 3rd VP Shunt Faith has had.  We are hoping and praying that 3rd times the charm!

What is a Ventriculoperitoneal shunt?
VP Shunt is a catheter which is placed inside the ventricles (the fluid-filled spaces within the brain) and is attached to a valve which limits the amount and direction of flow of the fluid. This valve is then connected to a long catheter that is tunneled under the skin from the head down to the abdomen where it ends in the abdominal cavity (the peritoneum). This type of hydrocephalus shunt diverts the excess fluid from inside the ventricles in the brain to the abdomen where it can be re-absorbed.


Any questions about this post, another post, any of Faith's medical diagnosis, or anything else?  Please email them to: mickeyshelljoy@hotmail.com so we can answer them for you.  Chances are that if you are wondering, so is someone else! :) 

We are SO, SO, SO HAPPY and Thankful that Faith continues to act appropriately for her age.  She loves music and watching her mobile.  She loves it when I read to her and especially books with bright colored pages!

Please keep Faith in your thoughts and prayers tomorrow and always!

With Love,
The Sunde's

Update

Faith's surgery on Thursday to repair the left side leak in her head went well.  She has been doing fine since surgery with stable vitals, eating well, and acting appropriately.  However, her EVD (external ventricular drain)/External Shunt is not draining any CSF (cerebral spinal fluid) as it should be.  There has been no CSF output since shortly after surgery.  They will most likely have to do surgery tomorrow to replace the EVD with a new one.  Either way, her shunt will not be able to be internalized on Thursday.

We do our best to update our blog as often as possible but it is much easier to update facebook and post pictures there too.  If you are not our friend on facebook and have a page, please friend request us: Michele DeBoer Sunde and/or Steven Sunde

Sleepy Girl

Precious Angel 2/2/12

Faith with her new quilt from the hospital 2/7/12

Faith waiting to go to surgery on 2/9/12

Faith snuggling with Daddy before surgery on 2/2/12

Surgery #7 Today

Faith is having her 7th surgery today.  This surgery is to repair the leak on the left side of her head where her 1st shunt was.  This site continues to leak.  This is a problem because if fluid can get out then infection can get in.  They can not put in a new internal shunt until this leak is fixed.  If everything goes as planned and the leak is fixed, she will have surgery to internalize her shunt next week Thursday.  Please keep her in your thoughts and prayers.  Thank you for all of your support!

With Love,
The Sunde's

Faith is 9 weeks old!

Faith is now 9 weeks old already.  She is doing well since surgery.  They test CSF (cerebral spinal fluid) every few days for infection.  The 1st culture was positve but all of the cultures since continue to be negative.  She has one more day of antibiotics.  They will continue to test the CSF between now and surgery.  The surgery to internalize her shunt is tentatively scheduled for next week Thursday, February 16th.  They have not decided yet where the new shunt will be placed.  Her 1st shunt was on the left side of her head.  The 2nd shunt was on the right side.  The left side of her head continues to leak.  This is how they feel that bacteria was able to get in.  It makes sense that if CSF can come out of the site, that bacteria can get in.  They feel that this site will eventually get enough scar tissue to heal completely and not leak but it will just take time.

We appreciate your continued support during this tough time.  Faith is such a little fighter!

With Love,
Steve and Michele

Surgery went well

Faith's shunt was infected and had to be externalized today.  The surgery went well.  They were able to take out the breathing tube so she won't have to be on a ventilator.  This is great news because she has always been agitated in the past when she had to be on the ventilator after surgery.  She is in recovery now and we are waiting to see her.  She will have the external shunt for approximately 10-14 days.  Depending how things go, she will have another surgery to put in another new shunt. 

Faith is just 8 weeks old and this is her 6th surgery.  She is such a fighter!  It is so hard for us to see her go through all of this.  We are thankful that she will not remember it! 

Surgery Again

Faith's shunt study showed that her shunt is malfunctioning.  They are trying to squeeze her in tomorrow and she is tentatively scheduled for surgery sometime between 3-5pm.  If they can't fit her in tomorrow, she will have it on Friday.  They are giving her tylenol to try to keep her comfortable.  She is very lethargic and not eating much.  We will try to update as much as possible.  Please keep her in your thoughts and prayers.  Thank you for all of your support.
With Love,
Steve and Michele

Back at Helen DeVos Children's Hospital

Faith was doing well at home for a few days.  Tuesday she became very lethargic, low grade fever, and not eating. We brought her to the ER and she was admitted to the PICU (Pediatric Intensive Care Unit).  They will be doing a shunt study this afternoon to be sure her shunt is working properly.  They will also take a culture of CSF (cerebral spinal fluid) to check for infection.  That culture is checked daily for 3 days.  Her first shunt site is leaking again.  They are talking that she may have to have surgery tomorrow to try to repair that.  Prayers appreciated!

Coming Home!

Faith is finally coming home tomorrow.  And this time it is going to be for good!

Finally an Update!

Highlights since last blog update:

1/12/12–1/15/12 – A rough few days for Faith recovering from surgery and being unable to be moved or held due to her external shunt.

1/16/12 - Faith is 6 weeks old today! Sleeping beauty getting her rest before her MRI.

 

Faith is so adorable even with an external brain shunt coming out of her head. Our little fighter!

 

Faith sleeping in her buggy going to MRI

 

Faith's MRI went very well. She slept through it and did not have to be sedated at all. :)

1/18/12 - Faith will be having surgery tomorrow around 12:30 pm. This surgery is to put in a new brain shunt and take out the external shunt. This is her 5th surgery and she is just 6 weeks old. She is a fighter!  Thoughts and prayers appreciated as always! :) ♥

1/19/12 - Faith's surgery went well. She is resting comfortably. They *should* be able to take her off the ventilator overnight.

1/20/12 - Faith was taken off the ventilator at 9:30 pm last night. She had to be given a blood transfusion because her hemoglobin was low after surgery. She took less than an ounce and then slept for hours. At 3:30 am she took 3 ounces which is what she was taking before surgery. She is definitely a great eater. I was able to hold her twice yesterday which was so awesome because we have not been able to hold her for 14 days! ♥  

1/21/12-1/23/12 – Good days for Faith!  She has been so much happier now that she can be held again and go in a bouncy seat too.  They even passed her around at the nurses station for an hour and she just loved it. 

1/24/12 - Faith is 7 weeks old already! She is being monitored closely to be sure her shunt is working properly. We hope and pray it does! We are SO ready for her to be home with us.