Hospital Stay Continues...

Faith does has a way of drawing a crowd even if it is just her family.

She really love to grab faces and hair...big sister Hope plays along.

She likes to show off her IV, or just yank it out if she can.

Feeling great today...someone want to play ball?

Faith is still in the hospital, but we are expecting to get out tomorrow.  We will see if the surgery was successful in removing the bleeding problem, and we are also hopeful that it will remove some of the pain she has been experiencing during her feedings.  She just starting eating slowing today.  We have been waiting for her intestines to start working again as they stop when they are handled during surgery.  She was quite happy when we left her with Momma at the hospital.  It will be nice to get out.  We think that we were in the hospital during this same weekend last year.  It is amazing the difference between last year and this year.  She is recovering so fast now.  She had surgery on Friday morning, and she was off pain meds by Saturday...I would like to see some of you try that. :)

Ambulance Trip and Hospital

Just when we thought the hospital was a not so fond memory....we're back.  On Wednesday, Faith had another bleeding episode except this time the blood poured out of her intestines quickly and in a fairly significant way.  Jesi had walked to a therapy appointment and hence did not have the van.  She would have just driven to the hospital, but she wisely had them call an ambulance since walking would have taken way too long.  The blood came out in a large enough quantity that it poured out of her diaper and pooled on the floor.

We are now in the hospital and had a test yesterday for Meckel's.  Meckel's can randomly bleed in your small intestines.  The test was negative so the next option became surgery to physically look at the small intestines.  So we opted for the surgery which we had this morning at 9.  The surgeon found a growth on her small intestines and removed it.  Gross, but it was squirting blood so we think it was the culprit.  He was easily able to get it out and close her up without removing a section of intestine which is good.  He also removed her appendix while he was at it so I guess we won't have to worry about any infection there.  He did mention that he has never seen anything like it...surprise, our daughter has something that a doctor has never seen.  Faith is recovering nicely, and we hope to be out of here by Sunday.  We are also hopeful that this could have been the cause of some of her pain while being fed.  By God's grace, we will see a great improvement in her feeding.

On a positive note for Hope (our 5 year old), she had to witness the bloodloss episode, but got to ride in the front seat of the ambulance which she thought was so cool.

Colonoscopy update

Well, today was our big day for Faith's colonoscopy.  We watched as they gave her some happy juice to make her sleep.  It took less than 30 seconds for her to go under with this stuff.  She was already tired and almost fell asleep watching Baby Einstein videos which she seemed to enjoy.  Once under, we were told it would be at least 45 minutes and they would let us know if it was more than an hour as polyps would take about 5 minutes for each one to be removed.  When the doc yelled down the hall to us after maybe 30 minutes, we were quite surprised.  He expected to find polyps and possible many, but found none.  Instead he found a swollen lymph node that was being rubbed across during each bowel movement which would cause it to bleed.  The bleeding had subsided a few days ago so no real problem.  He did take a biopsy to have her tested for any allergies which seemed like a good idea - glad he thought of it.

This is all very good news and Faith seems to be recovering very quickly from the colonoscopy.  We are beginning to wonder if the sickness (possible pneumonia) she had recently is to blame for this and other issues.  As many of you know, we have started using the bipap for sleeping because her apnea seemed to reappear recently.  She had been sweating as she would go to sleep which is a sign of fighting for oxygen.  Well in the past few days, she has stopped sweating as she falls asleep.  This has made us wonder if she was sick longer than we knew and caused signs of apnea.  Not sure, but we are going to watch and see.  As she laid in the hospital today sleeping comfortably without her bipap or any other aid, her O2 levels were consistently at 97% and never dropped below 94%.  Before her jaw distraction, she would quickly drop into the 80s.  So as you can see, we are wondering if she really needs the bipap on a regular basis or just when she is sick.  Now you have experienced my attempt to practice medicine and reason through all of this craziness...thanks for all your prayers!!

Blood Tranfusion and a little fun on Mackinac Island

Faith enjoys the view at Mackinaw Island, MI from our hotel room.

Mackinac Island allows no motorized vehicles on the island.

The Smith girls enjoy the beautiful day and view as Faith hangs onto the railing.

Somehow Daddy always gets a smile out of Faith

If this doesn't make your feel patriotic, you're not a patriot.

Momma gets to enjoy the evening without Faith, and a beautiful view from the Grand Hotel's porch.

This is the Mackinac Bridge to Michigan's Upper Peninsula on our walk back to our hotel.

Faith is hanging with Hope in the hotel room...get off the phone and play with me.

Eli with his Mackinac Island hat as we leave with Mackinac Island in the background.

Blood transfusion...did it catch your attention?  Well, it had nothing to do with our little trip to Mackinac Island, but yes, Faith had a blood transfusion last week.  She has been bleeding in her bowel movements and lost enough that she needed the transfusion.  In fact, tomorrow we are taking her in for a colonoscopy.  Not quite 3 and getting her first colonoscopy...well, here we go.  She is doing well, and the blood transfusion was like giving her an upper.  Doc thinks she might have polyps so we will see.  This should be a fairly short outpatient procedure.  We will let you know how it goes.

If you have never been to Mackinac Island (pronounced Mackinaw), this is one of the more beautiful places on earth.  it is situated at the northern part of Michigan at the mouth of Lake Huron where the water flows from Lake Michigan and Lake Superior.  The waters of Lake Huron are beautifully blue and clear as you get near shore.  The island allows horses and bikes with motorized vehicle use limited mostly to emergency vehicles.  If you ever get the chance, this is one place worth visiting.

Video below...

Faith loves loud noises and we took this video of her laughing to our banging sounds.  The funniest part was after we took the video.  I was laying on the floor across from her watching the video on the camera.  She started laughing hard again because she could hear the banging sounds again through the camera's audio.

Hope you enjoy the video...remember this is a little girl who was not supposed to live, likely interact with us in this way.

Faith laughing

Summer of heat

Messy, but good.

Here is a picture of a hot and sticky little Faith.  We had given her a little ring sucker which she had seemed to enjoy.  Faith had another follow up sleep study.  It did show that she is dipping at times during her sleep...not sure why, but we may be using the bipap again to see how she does.  The last few nights she has slept all the way through the night, but she does wake us up during the typical night.  We are still having gas issues, but she definitely handles the gas better than she used to.  She does spit up still, but will go through plenty of days when she doesn't spit up.  We really need to start trying our own food mixtures, but time hasn't really been easy to come by this summer. 

We went to see Tobymac, Peter Furler, Mandisa, and Jamie Grace last night.  Faith enjoyed it, but then fell asleep during the loudest part of it with her ear plugs in her ears.  She is really handling things so much better which has allowed us to travel and do things we would normally do...even bike rides with her in the toddler seat.  We still keep the feeding tube and a cup with us at all times to keep her vented and well, catch it if we don't.