Wednesday, January 30, 2008

Yesterday was an eventful day. Faith went down to the OR for a bronch (aka scope her airway) to see if there were any granuloma (or growths) in her airway. Like previous bronchs it was very difficult to get down her swollen vocal chords. The edema is still pretty significant, which was probably caused by her long term intubation (now you know why we were so stressed every time she got put back on the vent in the NICU!) Faith's pulmonary team wants an Ear, Nose and Throat (ENT) doc to do another bronch next week. There are some options to decrease the swelling such as a surgery to scrap off the scar tissue, but time and growth is the best option at this point. Faith did very well through the procedure and is back to her smiley self this morning.
When I was in the waiting room yesterday I read a quote in a magazine that I can't seem to get out of my head: "Ships are safe in harbors, but that's not what ships are for." This lead me to think about the dozens of kids at TCH who spend their lives in the hospital, thus the Safe Harbor Project was born! We want to advocate for these families and start an organization that works on getitng these kids home (SAFELY). Children deserve safe harbors at home, not in hospitals. Unfortunately as you all know from what has happened to us both times we went home, for medical fragile children like Faith, home is not always a safe place. SO this is our new mission! In order for things to change there needs to be new legislation to increase funding and awareness of this growing problem. We'll let you know as things progress and we get this project rolling.
Have a great day!
Brian and Jen

Friday, January 25, 2008

Faith is just a week away from turning 1 year old! She is truly her own person. Her personality is coming out more and more these days. We could write a whole book on the faces of Faith. We've got to watch out because she is turning out to be a little flirt- she's a pro at batting her eye lashes and giving mischievous grins.... She's just a lot of fun to play with.
Faith had a surprise eye exam today. Nothing new to report. It was reconfirmed that she is blind in her left eye. Her eye doc does believe that she can see light, but cannot see much else. It was interesting because he put his hand over each eye- every time he cupped her right eye she freaked out but when he put it over her left eye there was not a response. The damage that was done to her eye is irreversible- it's not something that can "grow" or "develop" (we know with God ALL things are possible....) her right eye is pretty near sighted and she will be fitted for glasses on February 7th. It's such a miracle that she can see as much as she can. We were prepared that her vision would be minimal. The docs said that if she had not received those laser eye surgeries she'd be totally blind. He also said that in a few years Faith can have her left eye cosmetically realigned so it does not drift like it does now-it will not improve any vision (the damage is irreversible) but it will make it appear as though she has normal vision. We're not sure how we feel about this (putting the poor girl through another surgery purely for cosmetic reasons sounds harsh..) however the eye doc said that when these kids go to school it's important for them to have some normalcy.
On another note we are touched that you check the blog not only for updates about Faith but for her friend Emily as well. I told this to Emily's mom today and she was touched. It also came at a good time because once again she needs our prayers. Emily is trach/vented just like Faith but has had a much larger battle to fight (imagine that). She received a heart transplant a little over a year ago and has not had an easy time since. A few weeks before Christmas she coded three times (meaning she stopped breathing and her heart stoped beating....) it appeared that her body was rejecting the heart. Today after work when I stopped in to say hi she did not look good. Sure enough she was sent back down to the PICU. Emily's mom wanted me to share her story with you because she knows how the power of prayer has saved her daughter. Please join us again in lifting up this precious little angel.
Thanks so much,
Brian and Jen

Sunday, January 20, 2008

While I was drinking my coffee this morning it hit me.....ya know what....Faith is doing pretty darn well....just's been about 3 months since she's had an IV....about 2 since she's been on antibiotics....she's growing welll and smiling more and more each day. She's even getting two new teeth on top! No, she won't be sitting up by her birthday (new goal..sitting up by her ADJUSTED birthday...) but she is doing new things each day. She has rolling over from side to side nailed down (she doesn't go on her tummy because of all her tubes....) her Uncle Josh even commented on how she's getting "rowdy" scooting herself off of pillows and rolling to reach toys and see (Yes, SEE!) people.
It's crazy to think that in two weeks from tomorrow Faith will be 1 year old! Speaking off which on Saturday February 2nd we have throwing a bash for our little princess- we've been attempting to get out invitations to everyone we know but in the hustle and bustle we know we've forgotten some of you so consider this an open invitation! The party will be from 2-4 at the hospital. For more information you can e-mail me ( One of our friends said, "If any baby deserves a big first birthday party, it's Faith" we couldn't agree more. :)
Have a great week!
Brian and Jen

Monday, January 14, 2008

Houston we've got a problem....

Hmmm....we knew Faith's rapid weight gain was too good to be true. And what an interesting problem to have- she's a tank! The nutritionist did a fat fold test on Faith to measure how much body fat she had and the results were a little sad.....Faith has very little muscle and a lot of fat. Coming from a girl who's thigh was as big as a pinky it sounds like a good problem to have but it's not really. Because Faith doesn't use her muscles the way other babies do they aren't developing properly. Think about it- other babies her age (adjusted and real age) are crawling, pulling themselves up on things and are constantly exercising their muscles. Faith just basically lays down all day. It's been very difficult knowing this and going to work- when we are not with Faith she just lays there, physical therapy and occupational therapy do come and work with her but in an 8 hour day that only does so much. :( The good news is they are upping her PT time so she will get more exercising. They also cut down on her calories so when she recieves breastmilk it's just pure breast milk- this is such a contrast to Faith's first 10 months of life- we'd try to cram the maximum carloiers her body would take into every feed. The good news is she is growing- we just need her to grow longer and put those fighting muscles to work!
Well thanks so much for checking in today!
Brian and Jen :)

Tuesday, January 8, 2008

Life is what happens when you are busy making other plans...

Above: Wooooohoooo Happy New Year! 2008 will be great (that's for you Amy...)
Below: What other kind of humiliating things do my parents have in store for me this year?

I’ve been meaning to post lately- I had in mind what I was going to write. We were excited because Faith was weaning quickly on the vent. Her rehab therapist even put a little bug in our ear that he thought she could be off the vent this summer (meaning she could come home this summer).

Then the inevitable happened.

Yesterday her rate went down from 12 (breaths per minute) to 10. During morning rounds her pulmonary doc told me how 10 was a significant number- how it was a really good sign that her lungs were healing. We were stoked. Then Faith had a sleepless night then we noticed her working pretty hard. After requesting an x-ray we learned that her right lobe (lung) was collapsing. The good news is this wasn’t the type of collapsing you see when there is an illness- it’s the type you see when you take away support. SO basically Faith told everyone to sloooooooow down. She needs time. She needs to grow. It’s a little disappointing to us because this shows how much she really needs the ventilator. Rats. At least she is not sick, at least she is safe. So it probably won’t be summer now (I know a lot you you will tell us to think positive and who knows but you guys don’t see what we see- we see 2 year olds with the same problems as Faith who have spent their whole lives in hospitals....just like us). It’s a little daunting to think of spending that much time in a hospital but as we’re sure you guys know, you’d do anything for your kids. It helps that we are in a different mind set as well. In the NICU it was all about counting days. You’d greet other families in the unit by exchanging the number of days you’d been there- we can’t do that now (it’s been well over 300 but whose counting...) we don’t count months...we’re not even going to count years... and heck we won’t even count breaths (’s all the same...) at this point we’re just counting correction we’re counting 1 life and that’s more than we had at this time last year. :)
Thanks for checking in, thanks for hanging on with us.
Brian and Jen

Friday, January 4, 2008

Happy New Year everyone!!!! We have a feeling 2008 is going to be a great year. My friend Amy told me the other day..’You guys probably just had the most traumatic year of your lives.... So it can only get better." I think she’s right. :) Faith is ringing in the new year at 18 pounds! Can you believe it! She’s a tub! She’s getting so big they had to cut back on her calories (they fortify breastmilk w/extra calories) she is getting so round but is not very they are trying to even her out. What a wonderful problem to have, huh? Other than that Faith is doing well. She’s really been rolling around lately. If someone walks into the room she turns her body to get a look at them. Speaking of looking we know a lot of you have been wondering about her eyes. She hasn’t had an eye exam in a while but will be getting one in a few weeks. You may remember us talking about glasses a few months ago. Faith’s new eye doc at Children’s does not like to put glasses on babies before they are a year old- Faith’s eye doc at St. Joe’s wanted to put her in glasses right a way. We hope that she will receive her glasses soon- we think it will really help. Faith’s eyes are definitely better than we thought. She looks at people from across the room and recognizes faces. Unfortunately we do notice her vision is not equal to other babies her age. You still have to get pretty close to her for her to recognize you or smile and her left eye is defiantly of track. You may have noticed in the slide show her left eye is often unfocused. It also looks cloudy- almost how a blind person’s eye looks. Nevertheless we are so grateful for the eyesight she has.
Faith’s respiratory status continues to remain stable. The big goal is for her to strengthen her upper core, which will help stabilize her airway. Sitting up will be an indicator that she is ready for less support. SO that’s what we’ve been working on. Our goal is that she will sit up by 1st birthday-, which is about 1 month away! Well thank you for checking in today. We wish you all a happy and healthy New Year!

Brian and Jen

PS: We have some other happy news to report- Faith’s friend Emily is doing great! A few weeks ago she came very very close to losing her life- we are happy to report that she is out of the PICU and back up on the floor with Faith. This is nothing short of a miracle. Her mom credits all of the prayers for saving her daughter!