Sunday, August 31, 2008
I feel as though I offended some people with my last post. My apologies if I came across pessimistic and self-absorbed. It was never my inattention to make those of you who do not have a sick child feel bad. It is only human to think about the grass on the other side of the fence from time to time.
For sometime now I've been thinking about where to go with this blog. Before Faith was born I didn't even know what a blog was. One of our nurses in the NICU introduced us to a family who had set up a blog to inform others of their daughter's progress. During Faith's hospital stay the blog was a way to update people on her condition. This was especially helpful during Faith's NICU stay when things were pretty touch and go.
Now that Faith is home and doing well this blog has become a journal for me. At the end of the day it's a way to reflect and process everything we've gone through. In doing this there is a degree of vulnerability, as we publish our thoughts for everyone to read. This especially difficult when almost everyone we know in our personal life follows this blog. Lately I've thought about stopping the blog. I feel as though it has served it's purpose and it's time to begin a new chapter. But then I am reminded of the people who have become a part of Faith's life. Sometimes I run into the most random people who tell me they have been following Faith's story and how it has touched them.
I am a frequent follower of other people's blogs. Some of these blogs are about children who are battling chronic conditions and their status is pretty day to day. When I read these blogs I feel silly about writing about the ordinary and mundane things like Faith's field trips. I also follow blogs by families who have been trough tragedy or are enduring their own hardships. They also write about the day to day stuff like birthday parties and field trips. I enjoy peeking in on their life and reading of happy times, especially when I know where they have come from. It makes the sweet moments even sweeter. Without sounding narcissistic I am reminded that maybe some of you feel that way about our blog, especially those of you who have been with us since day one.
So I am not sure what we are going to do. I've thought about setting up a personal blog where I can journal, vent and express my feelings about adjusting to life with a medically fragile child, or I might just continue griping on here and if you'd like to hang on with us for this ride we always have an open seat, window and all.
Thanks for hanging in there with us,
Jen and Brian.
PS: This blog is not just for us, or for you, but for Faith. One day I hope she will be able to read not only the stories of her life but of her parent's as well. Hopefully she won't remember these first few turbulent years of her life, but will have these collections of writings to reminded her of the miracle she is!
Wednesday, August 27, 2008
Sunday, August 24, 2008
I hope you all have a better week then ours was last week! ;)
More on Faith later...
Saturday, August 16, 2008
What a special summer it was. Although I taught summer school, it was the longest I ever got to be with Faith (I had a 4 week maternity leave after having her, yes c-section and all). It was just sooooo nice to be a family! I (Jen) will be working part time as a reading specialist again this year which will allow me flexibility to be with Faith.
We have not published the drama we have had with our nurses or the nursing agency- we are taking the high road on that one. As you know we were very worried we wouldn’t find someone by the time school started. Well the LORD really worked everything out and we have found an outstanding nurse to work the days I am at school. We are still working out the kinks as we switch over to a new agency, so I am taking a few weeks off of school until we get everything squared away. Not the way I wanted to start the year off but it is our only choice. We are very blessed and excited about our new nurse though! Now if we could only get some help at night! ;)
I realized that there were a lot of pictures from our summer we have not shared with all of you. So it was a great excuse to put together another montage! Enjoy!
Monday, August 11, 2008
Tracheosto-mommies: This picture is funny. First we tried to get just the kids in the picture but everyone was having a meltdown (and Faith kept pulling Noel's hair). So we had to get the mommy's involved. As you can see the girls are full of drama, and Milo is just chillin' (such a boy!)
Saturday, August 9, 2008
Above: Faith and her primary night nurse Judy. Judy took care of Faith from the second day of her life. Faith was not an easy baby to take care of, Judy (and our other nurses) spent many nights rocking her to life (and we mean that quite literally! Her heart rate would often plummet and she would need stimulation to get it going again!)
Below: Faith says hi to her fellow NICU alum, Rylie.
Above: Jane (RT) and Judy (RN)
Below: Patty, one of Faith's primary nurses
Above: Lisa (another primary nurse) Below: Erin (another primary and the person who put the day together (you did a great job Erin- thank you!)
Below: Dr. Ellina Liptsen. I will never forget doctor Ellina because she was the doc who was on the day Faith was born. Before going into the delivery room we met her in the NICU and she described how she would save our baby's life.
Above: Teena was Faith's first primary nurse. Like Judy she took care of Faith from her second day of life.
Above: Faith and Danielle (RT)
Can you tell this girl is exhausted?! You'd think she would TOTALLY crash after the big day- well she did for 10 minutes in the car but wouldn't take a nap when we got home. This girl sure loves a party!
These pictures bring tears to my eyes. Words cannot express how thankful we are to our St. Joe's family. We walked away from the day feeling so loved and supported. They have been with us every step of the way. We are forever grateful for the priceless gift they given us, and most of all for the love and compassion they have shown our family. Thanks guys- WE LOVE YOU ALL!!!
Tuesday, August 5, 2008
What got us through the 420 days spent in the hospital (Yes...we counted...) was thinking about the future...it's also what gets us through the sleepless nights. I picture Faith 5. Head full of curls, big toothy grin, heading off to Kindergarten with a Dora the Explorer backpack. This "this too shall pass" mentality is sometimes the only thing that gets us through the day.
But now we will relish that our daughter is 18 months old. We will enjoy her silent laughter, delight in her mischievous grins, and take pride that she thinks her mom and dad (and dogs of course) are the coolest people on Earth.
PS: Please remind Faith of that last sentence when she is 18 years old!
Saturday, August 2, 2008
When we went to Gymboree a few weeks ago there was a sign in the classroom that read, "Who says first words have to be words?" The sign was promoting their baby sign language class.
As you know Faith cannot make noise so audible words will have to wait. We've been working on sign language but Faith doesn't seem to be catching on. Lately we've been concerned about what goes on cognitively with Faith. She is very interactive and happy but she doesn't seem to "get things." For example she doesn't know labels. Multiple times a day we ask her "where's Daddy?" or "where's Mommy?" She just smiles. Kids half her age know and understand words such as "toy" or "bottle." We aren't even sure if she knows her name. Yesterday Faith proved that there's a lot more going on in her little noggin then we thought. We were sitting on the couch and we asked her "Where's Elway?" (Elway is our yellow lab) she looked over in his direction. We both looked at each other...naaa..just a coincidence. Again.."Where's Elway?" Again she looked. Ok...we said..let's test this.."Where's mommy?" She didn't look at Elway, she didn't look at me. "Where's the TV?" Again...she didn't look anywhere. Once more we asked if she knew where Elway was, and again she looked at him.WOW!! It was real!!! Today I kept asking her, and again and again she'd look for him...even when he wasn't in the room. She also did the same thing with our other dog, Buffalo!
I can't even begin to tell you how much this meant to us. It was as if we connected with her. The only thing I can relate this to is what it might be like sitting by someone in a coma and talking to them for months...sometimes years and getting no response..then one day you get a flicker of the hand, or a nod of the head..... all along this person who you thought was not aware of what you've been saying responds to you...they were listening they just didn't have the ability to respond. Until one day it happens....
So we're taking this as Faith's first "words." no they aren't spoken...they aren't even signed...but they are understood. And that speaks volumes to us!
OK so now that we have the sappy story out of the way here are some clips of Faith playing with her "brothers." She is so enthralled with them- anytime they come near her she beams with delight. They are very good to her too- in fact we have to worry more about her hurting them! She really tortures them...grabbing their tails, poking eyes, holding onto their fur as tight as she can. Buffalo (the chocolate lab) tolerates her beatings the best. In the first clip you'll see how Elway gets a little freaked when she goes for the tail: