Sometimes a picture is worth a thousand words.

Faith loves to smile at her Mom

Hopefully we will be home by dinner tonight.

Thanks for all your prayers.

To the Floor

On Friday we went up to see Faith in the morning and when we arrived to the PICU, her nurse told us Faith will be moving to the floor soon.  We were so excited!  In another words that means she is getting better, everything is going wonderfully and she no longer need to be in the ICU. Praise the Lord!

When Faith was moved to the floor later that day, we spoke with her doctor and he said if everything stays the same or keeps getting better then we could expect for Faith to go home on Wednesday.  Since we have been in this boat a few times now, we will only be excited when she is in the carseat in our van on the way home.  Then we both will know she is really coming home.  They will not discharge Faith if any of her numbers are off, like her temp or gets any kind of infection.  Please pray that her health stays well and she remains strong.

I went and saw her today and she looks wonderful!  She told me she is ready to come home! :)  Ever since her trache was placed I really feel like she has been awake and more alert more.  My theory is because she no longer has to work so hard to breath she can use that energy being awake and looking around.  However she is still on that puff of extra oxygen so please also pray that she will soon, very soon grow out of needing that and she would be able to breath completely on her own.

As for helping me out...With Faith having the G-Tube (feeding tube) placed we will be feeding her through her stomach.  There is a "button" on her stomach where we will be attaching a tube to feed her.  With that being said, Faith is in need of some 3-6 month shirts, not onesies and no snaps in the crotch area, a true shirt.  This way we will be able to pull up the shirt and attach the tube and not have to take off shorts and then unsnap her shirt.  The true shirt will make it so easy.  The only reason I am adding this in the blog is because I have looked many many places for shirts 3-6 months and can not find any.  If you find a store please let me know.  Thanks!

No more ventilator!!!!

A few videos for your viewing pleasure--->

A beautiful bright eyed girl with a trache and g-tube just a few hours after surgery on Monday.

Removed the ventilator at around 2:00AM Teusday morning. A happy Dad gets to hold her.

No more ventilator!!! Get that sucker out of here!

She's Out of Surgery...Again

Faith is out of surgery! Everything went great. She is now in recovery and it is sooo nice to see her face without any hoses or tape on it. The chubby cheeks do exsist and they are beautiful!!! I will post a picture as soon as I get a chance.

Thanks so much to everyone who is thinking of us today. A special thanks to these two ladies who brought us some munchies to enjoy while we are here. The lady on the left, Melanie, is a blog follower who we have never met until today. The lady on the right, Stephanie is one of my brother, Travis' friends. These two ladies are in a bible study together.

Melanie Sloan and Stephanie Claunch

Another special Thanks to Mimi (phoebe) and Papop (doc), Don and Linda Verge, and Aunt Alison and Cousin Hudson for coming to hang out with us while the surgery was in progress. Of course MANY other thanks go out to everyone else who has been helping us in many ways and thank you so much for your prayers.

Here we Go!!

They have taken her back and we just heard that they have already started!!!  (it's 11:00am)  Hope just a few hours and she will be back in her room!!!

Surgery Today

We just got word that the surgery time will be around 10:30am, so in about an hour.  Keep checking the blog and we will try to keep it updated!  The Lord is at work, because one of the surgeons just came by and said there is normally never time on a Monday in OR.  Normally they are doing cases that came in from over the weekend or scheduled out patient.  Thank You Jesus for the time slot today!!!

Thanks so much for all your prayers.

Surgery Scheduled

Surgery has been scheduled. Until today, it looked as if surgery would not be until later in the week, but today a slot opened up and we are now scheduled for surgery tomorrow (Monday). This is a relief. Now that Surgery is inevitable, and Faith has been intubated once again, we don't want to wait any longer than we have to.

Faith will be having three procedures performed; a tracheostomy, gastronostomy, and a fundoplication.

-Tracheostomy (trache)- In this procedure a tube will placed below Faith's vocal cords that will allow free passage of air to her lungs.

-Gastronostomy (G-tube)- In this procedure a tube is placed as a direct feeding line to her stomach. Since Faith is incapable of protecting her airway while drinking we will feed her through this tube instead of a bottle to prevent fluid from going into her lungs.

-Fundoplication (Fundo)- It is not uncommon to perform this procedure with a gastrostomy. The tightening of the esophagus prevents reflux from occurring. Faith has pretty severe reflux and this will help her not to vomit.



While we would prefer that none of these procedures be performed on Faith. It has become apparent that she needs them for the time being. The good news is that the trache and g-tube are reversible. The doctors have told us that it is not unreasonable to think that Faith will eventually grow out of the issues. So we will continue to take it all day by day. Please pray that the procedures go well and we will let you know as soon as she is out.

After these procedures, if all goes well with recovery, we will be headed home within a couple of weeks. Yippee!!!

Thanks for your prayers.

Moving Forward

We went to Children's Mercy tonight to see Faith and to Skype with the Grandparents who live in Billings, MT (Mic's Dad and Stepmom).  They called and were in need of a "Faith Fix", so we made it happen via web cam. :) 

While we were there today Faith's Attending doctor and main pediatrician resident doctor came by and talked with Mic and I about the next step for Faith.  Of course we were hoping they would say, "well you can take her home tomorrow", but he didn't.  Faith will be going to surgery to have a tracheostomy and a gastrostomy next week.  We know having this done will be a major lifestyle change but we are really ready to have her home, and are ready to make any kind of change to make that happen.  God has been very faithful.  We have many praises even though we don't necessarily want the trache and g-tube.  We still see many blessing everyday that God has and is giving our family.  This has been my verse from before Faith was even here and was still in my womb...

Jeremiah 29:11  For I know the plans for you, declares the Lord, plan to prosper you and not to harm you, plans to give you hope and a future.

I know that the Lord has already written her story and I am soo excited to see what the next chapter will bring.  I know there is hope in our future!  And I have no worries about what the Lord will bring us because he is holding Faith's hand when I not able to be at the hospital at her bedside.  And when I am there I feel him there with me. 

Mason (age 4) went to Vacation Bible School last year and we had purchased the music soundtrack CD from the church, Prince of Peace.  I know that God works in the smallest ways but on that CD there is a very up beat version of the song Today is the Day and it is the best song.  Today is the day the Lord has made let us rejoice and be glad in it (Psalm 118:24) .  When I hear that song I know that Today is the day not yesterday and not tomorrow but Today.  We live one day at a time and that is hard for me to think about.  I like to have all the plans and details worked out on paper, but God has shown me that he is in control and we need to live one day at a time.

Our new normal will be hard, but we both know that we can do it because God is on our side!  We have an awesome family and body of supporters who pray for us all the time.  We just had a 24 hour prayer chain that happened last weekend but I really think someone somewhere is praying for Faith and our family all hours of the day.  Thank you for all your prayers!  We really do feel peace about what's going to be happening next week.

Now We Wait....

Dr. Hornig (neurosurgery) stopped by yesterday to tell me he will not be doing anything about Faith's shunt. He went on to explain that after placing the shunt (at birth) her ventricles became a "healthy small". Now that they have more fluid in them they are a little more "plump" and still a healthy size. Dr. Hornig comes into Faith's room everyday to check her fontinel (soft spot). If the fontinel is enlarged or full then the shunt has stopped working and would need to be replaced. This is not the case for Faith, her fontinel feels perfect!

Elizabeth and I went and saw Faith today while Mason was at preschool. I spoke with the entourage of Doctors on Faith's case and they said since Faith has started to cough some and has a lot less secretions (saliva) in her throat, nose and mouth, they would feel better if we waited until next week to proceed with the plan of placing the trache and g-tube. I am really praying that through this experience God's light will be shown to the Doctors. We serve an awesome God! So, we will wait and pray for Faith over the next week to see if she will continue to progress with in the area.

Thanks for all your prayers and support.

                             From Today's Visit! 11 weeks 1 day and 9.9 lbs

Relapse

Friends and Family,

I am sure you have noticed that I have not updated the blog in sometime. I don’t like to be the barer of bad news and Faith’s situation has gotton worse over the past week. While Faith has been able to breath on her own, the doctors did not feel that her breathing ability was improved enough to take her home. The doctor’s concern was that Faith’s vocal cords were still paralyzed and that if any unforeseen event occurred (respiratory infection, fever, allergies, etc.) her airway could close up and put her in a very risky situation.

In addition to breathing issues it seems that Faith has also lost her ability to swallow. This means that the muscles in charge of protecting her air way and moving fluid down her throat are also paralyzed. Instead of feeding Faith with a bottle she is currently fed through her nose with a tube routed to her stomach.

On Friday we met with all of the specialists associated with Faith’s case. The plan was to perform a CT scan Monday to review the cyst in her brain. If the cyst was larger the Neurosurgeon would place a stint to allow this area in her cerebellum to drain. If the cyst in her brain was the same size or smaller the Neurosurgeon would do nothing and Faith would go to surgery to have a tracheostomy and a gastrostomy. In short the trach would be a tube below her voice box that would allow her to breath, the gastro would be a tube directly to her stomach that would allow us to feed her. Both of these items can be removed and heal back up in the event that she grows out of these issues.

This was the plan...

Over the weekend Faith began showing signs of relapse. The night nurses reported that Faith was having more apneas and what appeared to be mild seizures. Up to now it seemed that these issues had been resolved by her decompression surgery, so this was very alarming. Today the CT scan revealed that Faith’s shunt had stopped working and fluid has begun to collect in the upper ventricle of her brain again. We are waiting to here from the Neurosurgeon, but we assume that he will want to perform surgery as soon as possible to replace the shunt.

Ashley is with her now and we will let you know as soon as we know more.

Thanks for your prayers.

More Pictures

We have added some pictures to the Album tab. Check them out!

Still going strong

Just a quick update to let you all know that Faith is still breathing on her own. They have her on a 1/4 liter of oxygen, and she still has some strider when she's awake but the doctors, feel like she is doing well. If she continues on this track until Sunday, they will move her out of the PICU to a normal floor. We are making progress toward coming home. Very exciting.

Thanks for all your prayers.

Going Strong

It is now 5:57am and Faith was extubated around 5:00pm last night and she is STILL going strong with NO breathing machine!!!!  ALL PRAISE to the LORD!!!  Please keep praying!  She slept from about midnight to 5:30am on her tummy.  I think she has missed being on her tummy due to all the tubes for the breathing machine.  She has a feeding tube threw her nose and it is on a slow but continuous flow of formula.  We will just keep updating as the day progresses!

PS-HAPPY BIRTHDAY DAD! LOVE YOU -ashley

Here We Go!

They will be by soon to extubate!!!! Within the hour! PRAY!!!

One step at time

The Doctors stop by and said we are going to start the weaning process of the breathing machine.  If all goes well then they will extubate her late afternoon or early evening.  We will then see how she does and that will determine the next step.