This blog was started to document our walk through jaw distraction surgery and how it is helping Faith overcome some of the serious issues she has faced including obstructive sleep apnea. After researching jaw distraction surgery, we could only find one other T-18 child to have this procedure done. We hope our story will help other families dealing with Trisomy 18 and we look forward to the day God completes the work He has begun in Faith.
Monday, November 14, 2011
Out of the Hospital
We did make it out of the hospital, but it was by Monday (a week ago), not Sunday as I had hoped. Faith is doing much better and does not appear to be having any pain during her bowel movements. We still have the crazy gas problems which might be accentuated by fighting a little bug. Faith's big sis Hope has been having some stomach pains and feeling a little bad, but not horrible. Faith seems as though she may be fighting it as well. She has definitely improved from yesterday to today so maybe she will get over this and the gas soon. We are beginning to give her regular food to see if that makes a difference.
Sunday, November 6, 2011
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? |
Friday, November 4, 2011
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.
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.
Wednesday, October 26, 2011
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!!
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!!
Tuesday, October 25, 2011
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. |
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.
Wednesday, October 12, 2011
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.
Hope you enjoy the video...remember this is a little girl who was not supposed to live, likely interact with us in this way.
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