Sunday, August 31, 2008

Our Future Blogger...

A few weeks ago Faith's OT brought a computer program for Faith to use. She can just bang on the keyboard and the characters will move. Always the screen junkie, Faith loves it! It's only a matter of time before she starts blogging herself!

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

A different sort of view...

To earn some extra money (something we are always trying to do) I've been watching a 2 1/2 year old and an 8 month old during the evenings (their parents are in the hotel business and have to work extra duty b/c of the DNC). First of all I now have a new respect for trach families who have other children. I cannot even fathom how they manage to take care of multiple children and a child with special needs. Hats off!

A few months ago I wrote a post about how having a typical child scared me. I now know how right I was. I grew up babysitting. At 16 I always had a bay on my hip. Feeding, burping, diapering, all came natural. I was always proud of my experience and knew how it would help me down the road when I became a mommy.

A year ago when Faith inherited all of her extra hardware everything was so foreign. There are still people in our lives who cannot wrap their minds around the concept of a g-tube ("What do you mean she doesn't eat?!") Last night when it was time to feed this little 8 month old baby I put a spoon into his mouth and he ate it. It freaked me out. I looked at Brian..."what do I do next?" I tried again..he took another bite. Later on Brian gave him a bottle. We watched in awe as this little boy just sat there suckling....later Brian confided in me how we was also scared. Boy, how things can change!

It never fazed me that this little boy ran circles around Faith. At half her age he is doing things far beyond her physical and cognitive level. At this point that's to be expected. What did make us a little sad was the way his eyes moved. When people come over to the house for short visits they often say, "What do you mean she can't see?! She is looking!!" We won't deny this....but the way Faith sees is far from normal. When Brian was holding this baby I noticed how his eyes focused on things across the room. He watched his daddy drive down the street, he seemed to study details of people's faces... it was just different. Lately it seems like Faith's left eye has been glossing over. Like the way blind people's eyes look.

We are far over the comparing baby game. It's something parents love to do. As special need parents we learn very quickly it's a game to be avoided (not because you don't want to talk about it but because you just have bigger things to worry about). But when you someone else's child doing something that should be a God given right, something like being able to see, it just stings deep. It's not envy, it's just a different type of pain that only those who have felt it can describe.

This is something I don't think anyone truly understands unless you have a child like ours. We don't expect people to understand...we don't expect people to know what this is like. Sometimes the words the mean the most are..."I don't must be really hard.."

I'll end this post on a positive note. Last Tuesday after Faith's occupational therapy session we went through the motions of saying goodbye. Waving has been a long term goal for Faith, something she has been unable to do. Her OT always sings a goodbye song then waves her hands at Faith while exaggerating the movements. Week after week we go through this routine, however this time Faith look her little hand, raised it up and moved her fingers. We'll take it! Three witnesses all agreed that could have been a bye-bye. She repeated the movement again. but has yet to repeat it since then. Her OT comes again tomorrow, maybe she's the winning ticket. And if she doesn't, that's OK. At this point we'll take whatever we can get!

Sunday, August 24, 2008

Amazon knows best.....

Since I haven't had much time to blog these days, I'm always writing updates in my head so when I finally get the time to sit down I'll have something to write. This week I was planning a rant. We've had a very stressful week and it was one of those weeks where we've thrown our hands up in the air and surrendered. I was searching on for something unrelated to anything medical when a window popped up on my browser that said.."Amazon recommends: The child with a tracheostomy and gastrostomy: parental stress and coping in the home--a pilot study. I couldn't help but laugh. The computer knows. It was then I realized I don't have to rant and rave this week; someone has already written that book, and someone already understands!

I hope you all have a better week then ours was last week! ;)

More on Faith later...

Saturday, August 16, 2008

Summer Lovin'

You know the school year has begun when our blog posts are few and far between. Although we still have a good month until the official end of summer, as teachers we measure summer by when we have to go back to work!

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

Neck Breathers Unite!

We had another special day on Sunday. We had a picnic in the park for Colorado families who have kids with trachs. We got to see Milo and Noel who were at Children's with Faith and we got to meet Marissa and her family (who we met though this blog!) We also met another family who has a little girl as Children's right now. It was a lot of fun to be around people who truly understand what life is like for trach families! Here are some pics from the day:

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!)

Above: Faith and Milo. Milo is now off of the vent for three hours a day- which is a good thing because he's a runner!
Above: (L-R) Marissa shakes it up while Noel and Faith takes it all in.

Saturday, August 9, 2008

Reunion Day

Today was a very special day. We attended St. Joesph's Hospital NICU reunion! We have been looking forward to this day for a long time. It was SOOOOOOO wonderful to see all of our old friends! These heroic men and women not only SAVED our daughter's life (Many, many times we might add!) they taught us to be parents and how to embrace the challenges that have come our way. They truly are our heroes, friends, and family. We apologize to those from Joe's we did not get to get a picture with- it was a crazy day!

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.
Below: Lynn (NPP) I will also never forget Lynn. Since I couldn't go see Faith for the first 24 hours after she was born Lynn came and filled me in on what was going on in the NICU.

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

Happy 18 Months Faith!

Yesterday marked Faith's 18th month of life. I can't believe we are parents of an 18 month old...this is probably how parents feel when their children turn 18 years old (x a hundred of course...) Despite going through the hardest year and a half of our lives it's gone rather quick....and to be honest I am glad! Yes part of me is sad that our little girl is growing up but the other part is happy. Growth=better health.

What got us through the 420 days spent in the hospital (Yes...we counted...) was thinking about the'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

Puppy Love

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: