Sunday, June 29, 2008

This is a picture of a girl who hasn't slept in days. We'd show you one of her parents (equally as frightening) but we don't want to scare you away!


Can you tell that this little stinker is feeling better? The secretions are still crazy (I think Brian suctioned more than 100 times last kidding...) but she seems to be back to her little spunky self this morning. If anything will cheer her up it's the man with the ears!

For the first year of Faith's life she showed no interest at all in TV. We know this is a good thing as babies shouldn't really watch TV in the first place, but it always made us feel different. My friends who had babies always commented on what their child's favorite shows were. This always made me a little sad. It wasn't the fact that Faith didn't like TV but the possibility that she couldn't see the TV. Once she got her glasses she would glace at the TV in the hospital, but it was pretty high up on a shelf so I don't think she could see it very well. Since being home Faith has turned into a TV junky. I know this is bad, but sometimes we just need a breather. We're still not sure how much see "sees" of the TV- she seems to like the music and colors. We do know that she sees something- anytime Mickey Mouse comes on she just goes nuts. When he comes walking up and says "Hey-ya everybody!" It puts the biggest smile on her face, and ours too. This little sense of normalcy gives us some reassurance. Not only is she possibly seeing something but she has a preference, she understands, and most importantly something makes her happy. Little moments like these makes our home feel like the happiest place on earth. :)

Saturday, June 28, 2008

We're still here :)

The good news is we are still home. After speaking with the pulmonary docs at the hospital we decided to try to wait this one out at home. We came to the conclusion that there really isn't anything they'd do there different from what we do at home (after all she's already on a ventilator!) They prescribed steroids, which seem to have already taken effect. Faith seems to be feeling better- she looks like an insomniac now, her eyes are very red and baggy. She hasn't slept in about a day. Hopefully she'll (and we'll) get some much needed rest tonight. So there were no trips to Farmer's markets today...isn't that always how it works? I tell ya. One of these days maybe our lives will slow down! 'Tis life with a medically fragile child I suppose. Well thanks for hanging in there with us, all your prayers were felt!
little Faith needs your prayers today. She has gotten a lot worse. We are on the verge of going in.....trying to do all we can to keep her home (while keeping her safe...) just wanted to send out the prayer chain!

Sleepless in Seattle? They've got nothing on us!

It's 2:30 am- another sleepless night. This time I find it more manageable just to stay awake. Tonight Faith needs sooooo much suctioning. Poor thing. She just looks so uncomfortable. She also is running a fever. Which for her is very, very odd. She's had maybe one fever in her entire life.
Nights have been incredibly difficult for us to manage. Faith just isn't a good sleeper. She just gets really restless. We've tried every trick in the book- we've even started to give her melatonin (her pediatrician suggest this) which did not work either. We just REALLY need a night nurse. That's our prayer these days. I don't know how much longer we can do this. After a while it just really wares on you. You know that feeling when you wake up in the middle of the night, glance at your alarm clock and it says 12 or 1 and you are so happy because that means you have 6 more hours to go...well when it's your night with Faith it's the opposite. Every hour that goes by, however sleepless it might be, is closer to daylight, closer to normalcy.
I know this comes with the territory- sleepless nights with a baby and all- but when you have a kid with a trach and on a vent it's a little different. Especially when they are sick- there are no runny noses (since air does not go through Faith's nose she doesn't get gunky up there) instead she has a trach that fills with secretions. The only thing on my mind tonight is to keep her lungs and airway clear. Well... that and the annoying sound of her peep valve on her vent....I don't know what it is but always around this time when the headache starts to set in the sound of that thing right next to my ear (it sounds like a dishwasher that badly needs to replaced...) just gets to me. Maybe that's why tonight I just needed to stay up. Tonight I'm looking online for Famer's Markets in the area I can maybe sneak away to tomorrow. Awww...that sounds nice.

Friday, June 27, 2008

Murphy's Law as it applies to trach kids:

A few days ago I was thinking how this is the longest Faith has ever gone without being sick and how we have been fortunate not to have any unplanned hospital visits. Well Murphy's law took effect and our streak ended.

The past few days Faith has had yellow secretions from her trach- just a little cold, we thought. Yesterday when she woke up from her nap she was lethargic. She even let me put a thermometer in ear without flinching- anyone who knows Faith knows that this very un Faith like. So we called our Pediatrician at Children's and of course they told us to come in.
Since it was getting close to after hours we had to go through the emergency department.
Murphy's other law with sick kids is that they perk up when you get take them in, which happened to Faith. :) Nevertheless we got an antibiotic and left. Wow- imagine that!!!! The sick and twisted part of this story is we actually had a wonderful time while in the ED- we got to see some nurse friends and catch up with the staff (it's also pretty sad when the people at he front desk know your name..) When we were driving away Brian said.."I just feel so comfortable at the's like our second home." I think this is a testament to all of the wonderful people we have met along this journey who have made us feel right at home in the most not so home like places!!! :)

SO Faith is doing better and we are home- in our REAL home. Imagine that! :)

Tuesday, June 24, 2008

I'm All Shook Up

Watch out Elvis- there's a new rocker in town. Faith can shake, rattle and roll and has quite the following of groupies.

Sunday, June 22, 2008

A voice for Faith

Faith is a stander! Ok not an independent stander but she bears weight on her feet (which is HUGE) and allows us to hold herself up. She likes to hang on the the rails of the crib, and with support she stands. This "bearing weight" thing has been a long road. A few weeks ago if you would put her on your lap and try to get her to stand the minute her feet touched the floor she'd pull them up. So needless to say this is huge! Her physical therapist noted how Faith is going to learn the pull to stand backwards- she doesn't use her arms to hold herself up (once again a lot of it could be/c of her sensory issues....)but plants her feet and depending on the texture of the surface she'll hold on.
This past week we had Faith's IFSP (family service plan) meeting with her early intervention team (for those teacher friend's reading this it's like an IEP for babies). We have these meetings twice a year and come up with goals for the next 6 months. In the past our goals were always right along the lines with the traditional babie's first year milestones. This time time around we had goals FOR FAITH, not goals based on her age or what typical babies should be doing. There was really no mention about crawling or walking (two things that are still far off....) but more about what we wish for Faith. (It's dreaming those new dreams- Thanks Ann!) Our biggest wish for Faith is that she would have a voice- not an audible one-although that would be nice! ;) but for her to be able to communicate. As some of you may or may not know b/c of Faith's swollen airway and trach she is unable to produce any sounds. On a good day you may hear some very faint grunts when she is upset, but other than that she's Ariel from the Little Mirmaid. Whenever we take her anywhere or she meets someone new, people always comment on what a good baby she is because she doesn't cry like typical babies- what these people don't know is a lot of the time while they are saying that she IS crying, just not audibly.
Because off Faith's inability to makes sounds our wish is that she will learn to communicate with us in whatever way she can. For the past few months we have been using sign language with Faith, although she hasn't really caught on. In fact she doesn't even wave hi or bye. As Faith is getting older she is becoming more aware of what she wants. Her inmobility and inability to voice what she wants often causes her (and us) frusteration. So that is our new dream for Faith. We would like her to be able to say what she wants so we know how to help her. And it would be one more way to have a connection with her. We don't know when we'll hear the words, "momma" or "dadda" but we'll take in a sign or even in a look. We have no doubt in our mind that Faith knows we are her parents, but if we say, "where's daddy?" or "look at mommy" she gives us a blank stare. But that stuff isn't that important, what's important is that Faith knows that she has a family who loves her and who will do anything for her.

Allison Krauss said it best in the song "When you say nothing at all".....

It's amazing how you can speak right to my heart
Without saying a word, you can light up the dark
Try as I may, I could never explain
What I hear when you don't say a thing
The smile on your face lets me know that you need me
There's a truth in your eyes saying you'll never leave me
The touch of your hand says you'll catch me if ever I fall
You say it best when you say nothing at all

All day long I can hear people talking out loud
But when you hold me near, you drown out the crowd
Old Mr. Webster could never define
What's being said between your heart and mine
The smile on your face lets me know that you need me
There's a truth in your eyes saying you'll never leave me
The touch of your hand says you'll catch me if ever I fall
You say it best when you say nothing at all
The smile on your face lets me know that you need me
There's a truth in your eyes saying you'll never leave me
The touch of your hand says you'll catch me if ever I fall
You say it best when you say nothing at all

Tuesday, June 17, 2008

A week of Firsts

Faith's friend Noel came over to play last week. Noel was Faith's neighbor at the hospital for three months. The two tube buddies had a great time (and so did the tube moms!) We had to laugh at the situation-it was like the Doritos commercial where the moms are gabbing away and their newborns are just sitting in their carriers totally unaware of where they were....except our kids are toddlers and they just sit attached to ventilators. Yes, it's sad but we found humor in it. ;)

Reachin' for the 'Los! (our nickname for Buffalo)

One of the first things we learned about trachs is that you can't go swimming with them (or should we say it is not highly recommended!) But no one said anything about baby pools!!!! Of course Faith absolutely hated it- but she did stop crying long enough for us to get the above shot of her looking cool in the pool!

I promised the kids in my summer school class that I'd snap a picture of the birds nest in one of our flower pots. Since this blog is all about tiny miracles we thought we'd share it with you. :)

Yes, it was a week of firsts for Faith. She had her first play date, first time in a pool, and first time out at a restaurant! Brian and I finally got up the nerve to take Faith out on Father's day- and we all came out alive!!!!! PHEW! It was a bit of an ordeal- traveling with Faith and all of her equipment is like a three ring circus. People just don't really understand until they see us coming. And boy did they see us coming. Of course we got many many weird looks, which is only natural. At one point I said to Brian.."I think it's not the hole in her neck that freaks people out, it's probably all the tubes.." We both looked at each other and disagreement, "No, it's the hole in her neck..." :)
Nevertheless we did it, and Faith didn't freak out too much when we got home (although she did get pretty stressed at the restaurant).

Summer is just rolling along. We've been pretty busy with Faith. Between doctor appointments, therapy sessions, and our own crazy schedules it seems like everyday is as hectic as the last.
A few months ago I made a list of all the things I wanted to get accomplished over the summer- it's already mid June and I haven't touched any of them. Oh well- the important thing is we are home! Faith has officially been home for 2 months now. Wow. Someone at a NICU support group once told me that a significant date is when you've been home longer then you've been in the hospital- unfortunately we won't know what that's like until next April but hey I can already see what they mean!
Well Faith is finally sleep and it's time for us to turn in as well (we only have about an hour until she starts tossing and turning...)

Saturday, June 14, 2008

Saturday, June 7, 2008

Am I cool or what?

She sure is growing up isn't she? Faith got her first set of wheels this week- her first taste of independence. If you look at the first picture what may seem like a little detail to some is huge for us- look at her feet. First of all Faith has just got to the point where she puts her feet on the ground and bears some weight. A lot of this has to do with her sensory issues and texture- but notice how her feet are flat on the mat. I don't even like to way those types of mats feel on bare feet and neither did Faith- until today she tolerated it! Her physcial therpaist has commented on how she has "funky feet" meaning they turn out (kinda bow legged) when they are on the ground. However in this picture she has them flat, and turned perfectly. So once again Faith says, "You can't label me!"
We are settling into the routines of summer. Yes, we know we have it good. I (Jen) am going to teach Summer school until July 3rd while Brian makes some much needed repairs on the house (and paints it!!!) Summer came at a perfect time as we are still having some nursing problems. Basically we only have one nurse right now- which is ok because one of us is always home now. Even though I am teaching a little this summer in many ways it feels like our first summer as a family. It's hard to believe last year we were going back and forth to the NICU- right about now debating whether or not we were going to do the trach/g-tube surgeries. A year ago every blog there was a report on the lastest crisis- now we have to come up with stuff to blog about!
Amazing how time flies, amazing how far our little girl has come (and us as parents as well!)

Hopefully those of you who have subscribed are receiving updates via e-mail- if not our apologies we are still trying to figure all of this high tech blogging out!

Thursday, June 5, 2008

Working out the kinks

Ok we found a way to make receiving updates easier- simply enter your e-mail address in the side bar and voila! Thank!

Wednesday, June 4, 2008

Stepping into the 21st century of blogging (we're getting there!!)

As much as we love having multiple hits a day (btw there have been 27,000 in the past year!)we know that many of you stop by multiple times a week sometimes even a day when there isn't a post (sorry about that!) T0 alleviate this problem (and give you back a few more minutes a day!) we've enabled a feature where you will get an automatic notification via e-mail every time this page is updated. All you have to do is give us your email address (sorry there isn't an easier way..) you can leave your e-mail in the comments section or by e-mailing
We will have this feature up and running in a few days!!!!

Sunday, June 1, 2008

On a Lighter Note

Pics from the week:
Look at that sassy smile! The fact that Faith is outside and her eyes aren't shut is amazing. We have found that mid-morning there is nice shade on the deck- perfect for Faith! We've also figured away to just roll the vent next the the sliding glass door and voila; instant access to the outside world!
Below: Faith helps mommy make banana bread (she despises her high chair!)

Above: Faith's hospital head is almost gone!!! She was pretty bald in the back for a while- she still has preemie pancake head but her hair is filling out nicely.Above: 'Atta girl Faith- quite the model she knows how to perfectly cover up those "not to be seen on the Internet" parts while showing off her birthday suit.
Exercise time! Gotta love those toes!