Sticky Fingers

For the typical child these photos are not out of the ordinary; baby in high chair, gooey fingers, and messy cheeks. For Faith these pictures are another breakthrough.

Much of Faith's inability to eat has to do with the texture of food. As a part of her sensory processing disorder anything that is cold, hot, bumpy, slimy, or any different type of texture sends Faith over the edge.

Every time I cook or bake I take Faith into the kitchen with me. Usually she sits on her Dora tractor (as she has grown to hate her high chair). Yesterday I decided to give the high chair another shot. On this particular day Faith was an active participant in the baking. As I was pouring the banana bread batter into the pan she did what any 18 month old baby would do- she reached for the goo and grabbed it. No, she wasn't smiling, she didn't bring it to her mouth, but she was doing it! And she continued to "play" in it.

For those who know Faith and work with her on these "baby skills" the banana bread grab was a milestone! As I was cleaning Faith off I realized that this was the first time I had ever done this. I cleaned off the high chair I had envisioned wiping off when we were pregnant and picked it

out. This week a year ago we brought the high chair out of the box and set it up in anticipation of Faith's homecoming from the NICU. Faith never got to sit in it because she was admited to Children's a few days later. The high chair sat in our kitchen collecting dust for the next five months. Eventually we repacked it in the box and put it in the basement. At Children's Faith used a different high chair that gave her more support. By the time she came home in April she had grown to loathe the high chair, much less the texture of baby food. We brought the high chair out, but it just sat there like it had done before.

This story is not about the high chair (for she has sat in the high chair before), it's about reclaiming something that was taken away from us. it is about experiencing a normal baby moment.

As I struggled to get the creases between her tiny finger clean I realized that our moment had arrived, sticky fingers and all.

Breath by Breath

I heard about this story from a fellow trach mom. Faith uses the exact same ventilator as the girl in the video clip. I thought this might shed a little glimpse of what our daily life is like:

http://www.boston.com/news/local/massachusetts/articles/2008/07/24/when_life_hangs_by_a_tube/?page=1

Faith Visits the Aquarium

Three reasons why we are field trip crazy: 1.) We are both teachers, have the time, and are hanging onto every last thread of summer we can. 2.) During RSV we won't be going ANYWHERE so we have to live it up now. 3.) We couldn't do these things with Faith for so long, and we only dreamed about them during her 14 months in the hospital so we are living the dream now. :)



We took Faith to the an aquarium in Denver on Monday. She had a blast! Brian's mom is here from Buffalo so it was nice for her to get to experience something new with Faith. It seemed like Faith was looking at the fish but she was kind of "all over the place.." but looking back at the pictures she is really looking at them!!!

Above: Shark bait!! Below: Faith gets up close and personal with an otter. Doesn't her hair look light in this picture? It's a light brown but the way the light is shinning on it she almost looks like a red head!

Below: Daddy teaches Faith all about fish. Maybe one day she can go fishing with him!

Above: Grandma Reming takes Faith in for a closer look.
You might be wondering how we fit all of Faith's equipment in the stroller (especially you vent parents who know how much you need to take along! And not having a kid kart does make this a challenge!) The answer to this is the stroller has a really deep storage bin underneath that stores the battery and ventilator. We hang the suction machine and oxygen on the handle bars. All the rest of the supplies are in the purple backpack Brian in sporting (what daddy's do for their daughters!)

Above: If you look close enough you can see a stingray.

Isn't it kinda neat to see Faith exploring the world after picture after picture in the same hospital room?

She did it!

(Faith did not know we were filming her when we shot this (until the very end) she was supposed to be napping. :)

Today Faith hit a milestone we've been waiting for. A few minutes after we put Faith down for her afternoon nap Brian glanced at the video monitor and ran upstairs. I thought something terrible had happened (a disconnect or something) nope- nothing terrible- something very exciting. Faith was in the 4-point (crawling position) she got herself from lying down into that position all by herself. Yes, this is a 6 month old skill but for us, and for Faith it is a skill we never thought she'd obtain.

Faith HATES being on her tummy- and for good reason. Her g-tube in her stomach and trach w/ventilator tubing makes it very difficult. Faith's therapists have been working with her for a loooong time (in the hospital and at home) to get her into four point. She usually cries whenever we put her into this position. Faith does not roll onto her tummy so obviously sitting up on her own has a challenge- until today!!!

As you all know Faith does everything on her terms, in her own way (and yes, in her own time...) that's how she is doing this sitting up thing. She relies on her legs to push her up (not arm strength like typical babies). She is still trying to figure out how to get herself from 4-point to sitting (she has to slide her legs...tubing makes this difficult) but she did do this a few time!

Not only did she do it once but she continued to do it every time we put her back down. And we thought she wasn't a good sleeper now! Just wait!!! This is a very exciting milestone not because it's a physical barrier she crossed but because it gives her more choices, and more freedom. She often becomes frustrated because she can't do things typical babies her age do. She thumps her feet while laying down, singling to us that she wants up (this is one of her only forms of communication...) now she can choose whether or not she wants up or down. I think her life just got a little easier for her and a little bit more challenge for us! But this is a challenge we will fully embrace!

Thanks for all of your prayers for Emerson- we are truly touched on how many of you responded!!! :) She is hanging in there thanks to all of your prayers.

Prayer Request

It's time to call out the troops. Prayer warriors we need you. While we were at The Children's Hospital we met a little girl named Emerson. Emerson has a metabolic disorder and was recently transferred from Denver to Omaha, Nebraska to undergo a multiple organ transplant (pancreas, liver, bowel...) the transplant was their only hope for survival. Today, a month after transplant Emerson is clinging to life. I follow their blog very closely and her mom Erika has asked for many prayers. I am asking you to please keep little Emerson in your prayers tonight.
You can follow Emerson's progress at: http://www.cotaforemersonw.com/node/35

Sick again?!

Yesterday Brian and I decided to do something out of the ordinary. We haven't "lived it" up in about two years so we decided to take a day and have some fun. We went to Water World (a water park) and had a blast. While we had a lot of fun we couldn't stop thinking of Faith and how we cannot wait to take her to places like that someday (minus the trach of course).

It's just out luck that when we finally do something for ourselves we come back and Faith was a mess. She had a dusky tone, she wasn't smiling, and she was retracting. Her lungs sounded very wheezy, her nostrils were flaring and her heart rate was 180. She is usually on a 1/2 liter of oxygen and her oxygen saturation level is 98...well we put her on a liter of O2 and her sats just stayed above 90. We've grown as parents because we didn't rush to the phone or to the hospital. We knew if we got through the night we could go in the morning (and avoid all of the midnight er hoopla...) We also knew that there wasn't much they'd do there that we couldn't do at home (increase her support, O2, and give her breathing treatments).
Today Faith looked a little better. Since we already have an appointment scheduled for tomorrow the docs wanted us to try to wait until then. She has her smiles back, so we will wait another day.

We want Faith to be around other babies and experience new things but she is showing us that her immune system is compromised and we have to handle her interactions with others with care. This isn't going to stop us from taking her out, but we will be a little bit more cautious. After all it is summer...these are supposed to be her healthy months!

On a happier note here are some pics from our day from you know where... ;)


This is as close to the beach as Faith will ever get (at least for now..) another thing kids with trachs aren't supposed to do is to be around sand (tiny granules and openings in necks that lead to the lungs are not a good match!) (Pics from World of Wonder Children's Museum)
Another thing Faith will not see for a LONG LONG (we're talking decades here...)time is behind the wheel of a car. ;) Lucky for us she wasn't thrilled with the idea either. 'Atta girl Faith!
In the dino cave- Faith is brave!
Ahoy-Matey! Faith sails the high seas (with a little help from daddy).

Home sweet, Grandmas. This was Faith's first time at Grandma Mary's house. My mom of course, was thrilled. :)

Another night in paradise. :P

Ever since Faith has been home there have been many "what if's" that I have played over and over in my mind. One of them played out in typical Reming fashion last night:


Before go into detail about the "incident" here's some background on our day yesterday. We had a new roof installed (compliments of our insurance agency)on Monday. The roofing company said if they worked from dawn until dusk they could do it in one day, which sounded great to us! We knew Faith wouldn't tolerate the banging all day so we headed out very early.


As you can imagine traveling with a ventilator dependent child is not an easy task. As one of my fellow trach/vent moms called it our "portable PICU" is quite dramatic. To make Faith's vent potable we have to change the tubing, which is a pain in the neck in itself. One of us "bags" (manually breaths for her using a resuscitation bag) while the other switches out the circuit (tubing). Next we have to grab the oxygen tank, the battery for the vent, the suction machine, the resuscitation bag, feeding pump, spare supplies (extra trachs, ties, g-tube stuff, etc.)oh yeah and somewhere in there is a diaper bag (which we usually end up forgetting)with all of the typical stuff babies need. On this particular day we also traveled with the ventilator stand and heater for our stops at Grandma's house in between outings.


We probably went overboard, but we had fun taking Faith to the Children's museum, the mall, Kohls, and back and forth from my mom's house. We probably loaded and unloaded Faith 12 times into the car (my fellow trach/vent families can appreciate that feat..) It was a fun but exhausting day. We were anxious to get Faith back to our house to get her set up on humidity and because it was one of the very few nights we had a night nurse! Woooowhooo!!


So we got home and unpacked everything (once again the portable picu list in reverse...) set up her tube feed and just as Faith finally fell asleep it happened: Total darkness. Pitch black. The power is off.


When I was younger I secretly loved it when the power went off. It was always exciting. We would light candles and bring out the flash lights. The anticipation of not knowing when the lights would come back on was always thrilling. When the power abruptly came back on I was always a little disappointed. This was not the case last night.


We have two 9 hour back up batteries for Faith's ventilator (the 9 hours is used loosely..our traveling battery which they say can last 8 hours always seems to lose it's juice around hour 3....) Anyhow so this wasn't really the problem. The problem was that Faith's heater does not run off of a battery. The heater is what provides humidity to her trach, something that is critical in living with a trach. If this were any other day where Faith was at home and on humidity the entire day we wouldn't have worried so much. But on this paritucalr day she had been off of humidity the longest she's ever gone. Her secretions were starting to get thick....this wasn't good.

We were sure that it would come back on quickly...as the minutes passed and passed we called Excel (our energy company). When you have a child that is on life support equipment before hospital discharge you fill out a form that is sent to Excel detailing your child's condition, alerting them of the energy dependent needs of your child. We found out this form is meaningless. There was nothing they could do. No back up generator? Nope. My mind raced to a story I read about a month ago of a woman who spent 60 some years in an iron lung (another form of mechanical ventilation) only to die after a storm wiped out the power in their home.


We finally got an answer from excel- they estimated they would have power restored around 2am, however this was not a guarantee. We knew what we had to do. SO we re-packed our portable PICU (in the dark mind you, once again trach/vent families will appreciate that!) and headed back to my mom's house 20 minutes away. Poor Faith. What a day! Poor us, we cancelled our much needed night nurse.

While driving we realized that almost every block in our neighborhood had power. it was just our block and just our luck!!!

It wasn't such a bad night- All three of us (well four counting Elway) slept on a blow up mattress on my mom's living room floor. We have never slept like that with Faith- her in the middle. Yes it was a challenge with all her tubing but we made it work. In the morning we had to scoot on out of there because it was Tuesday- Faith's busiest day of the week (she receives occupational, speech, and physical therapy all in the same day...)

So that was our drama. I know I probably made it sound more dramatic then it was, but it was an ordeal. Especially when you are tired beyond means. This morning as Brian loaded the heavy vent stand back into the car he sighed.."I'm so ready to be done with all of this!" Me too..I said..me too.

~The Butterfly~
Once upon a time in a land far far away. There was a wonderful old man who loved everything. Animals, spiders, insects....

One day while walking through the woods the nice old man found a cocoon. Feeling lonely he decided to take the cocoon home to watch its beautiful transformation from a funny little cocoon to a beautiful butterfly. He gently placed the cocoon on his kitchen table, and watched over it for days.

Suddenly on the seventh day the cocoon started to move. It moved frantically! The old man felt sorry for the little butterfly inside the cocoon. He watched it struggle and struggle and struggle!

Finally the old man feeling so sorry for the cocooned butterfly rushed to its aide with a surgical scalpel and gently slit the cocoon so the butterfly could emerge. Just one slice was all it took, and the butterfly broke free from its cocoon only to wilt over in a completely motionless state.

The old man did not know what to think. Had he accidentally killed the little butterfly? No, it's still moving a little bit.! Maybe it's sick! Who the heck would know?
He was dumbfounded, and quite perplexed! What should I do, he said. Well he felt so sorry for the little creature that he decided the best thing he could do for the butterfly was to place it gently back into its cocoon. He did so, and placed a drop of honey on it to seal the cocoon, leaving the butterfly to nestle in its natural state.

Well the next day he noticed that the cocoon was moving again. Wow, he said! It moved and moved and struggled and struggled. Finally the butterfly broke free from its cocoon and stretched its wings out far and wide. Big time yawn!

Its beautiful wings were filled with wonderful colors! It looked around and took off! It was flying! Its so beautiful! The old man was jumping with joy! Wow! Go Baby, Go! And that wonderful butterfly did that just that, it flew and flew till it was almost out of the old mans sight. What a joy, he exclaimed! But then he started to think. What did I do wrong by trying to help that beautiful little butterfly out at first?

The old man went into town. Found the library, and read every book he could on butterflies and cocoons. Finally the answer appeared. The butterfly has to struggle and struggle while inside the cocoon.

That's how it gets its strength. That's just what they are designed to overcome in order to be strong and beautiful. Well needless to say the old man was shocked, saddened, and somewhat relieved. Now he knows the reason why they do what they do. It was only his perception that made it appear that the butterfly was having a hard time.

Well from then on the old man knew that loving something sometimes means to pray for it and cheer it on! He realized that God was wonderful, and that sometimes appearances aren't what they seem to be. That we all are beautiful butterflies, even though we have our apparent struggles in life...
Author Unknown

One of the Gang!

Above: Faith and her new friends play some music! Below: Grandma Mary plays with Faith in Grand Rabbits- I used to play in this independently owned toy store when I was a kid!



This week is full of firsts! Today Faith went to her first class! We attended a Gymboree music class. Faith had a BLAST! She was so intrigued by the other babies. She had a huge smile on her face whenever another baby came her way. This was soooo good for Faith, good for grandma and me, and good for the other moms and their babies! My mom said it would make all of them appreciate how easy they have it after seeing us! Nevertheless it was a lot of fun. I think we are going to enroll Faith in the class. I wasn't even sad when I saw babies half her age far more advanced then she is...I think I am starting to get over that. I was just sooooo proud of Faith. She has come such along way. For her to be in a room outside of the house (or hospital)interacting and smiling was just such a blessing!!!!)

Today also marked Faith's first trip into Boulder. It was special to be in the town I was born and raised in with my daughter. :) Boulder is about 20 mins from where we live but we don't head that way very often anymore- but I guess we will now!!!

It is such a JOY to experience all of these special moments with our little girl!

Among the Butterflies.....

Today we went on Faith's first field trip! Yes, it's hard work getting out and about but we want Faith to experience all of the things other kids get to- so off we went! We thought the butterfly pavilion would be a great first trip since Faith is the butterfly girl herself. She did Wonderful. It was really encouraging! She didn't "shut down" until we got outside and it was really bright. Her eyes still have a difficult time adjusting to light.

We hope you enjoy the photos! And a BIG thank you the Faith's primary nurses at Children's who gave us a gift card to the pavilion along with other "butterfly" goodies when we left the hospital (including the butterfly shirt Faith is wearing in the pics!)

This picture is for Aunt Susan. She sent Faith this "Don't make me call my Aunt" shirt after giving the doctors a piece of her mind when she visited Faith last February. She made the doctors promise not to poke her on her birthday. :) Needless to say they listened! (And are listening now!!!)

Today Faith had a bronch (aka they took a look at her airway....) we were a little unsure of what we where going to see. The news was pretty good- surprisingly the swelling has gone down a little bit. We are a little unsure if this is because of the steroids she was recently on, but our ENT also pointed out that her being sick recently would have made them more inflamed, despite the steroids. The doc even let a out a shout of glee (ENT's are definitely a different breed...) when he saw her vocal chord! He wasn't sure if they were moving (which is a whole 'nother drama we will deal with later) but the edema had subsided enough that he could see them. :) This is a positive sign. SO we go back in three months to see what he sees again. SO all in all it was a good result.

Faith had an eye exam a few weeks ago, my apologies for not sharing that info with you! Basically her right eye (the eye that she can see out of..) has gotten a little bit worse. It is a little more nearsighted then it was last February. Her opt. doc said she will probably need a new prescription for her glasses in about 6 months..(hmmm..I wonder what color we should get ...suggestions...?) Her left eye is still the same; no vision. I don't know if we shared this information with you all or not but Faith is at risk for going totally blind. Because of her advanced ROP and the two eye surgeries that saved the sight she has now (without a doubt she would be completely blind if it had not been for those surgeries...) her retinas are hanging on by "threads." If the retina detaches there isn't anything they can do. This can happen a week from now...15 years from now...or never (we'll take the third option please!!!!) Knowing this it is a blessing that Faith sees what she does now. She definitely copes with her vision loss- most people wouldn't even know she was partially blind if we didn't tell them. It is apparent that Faith can't see more than 4-5 feet in front of her- even with her glasses. If she is in her crib and I am at the door, she can't see me. The good news is we have a lot of good people working with her to optimize the vision she does have. She has a vision therapist from the Anchor Center for Blind Children that comes out and teaches us how best meet Faith's vision needs. I was looking forward to going to Anchor with Faith this summer for their Toddler group- but the MRSA police blowed the whistle and we can't. :( I hope all of this MRSA nonsense is cleared up before Faith goes to preschool because we would love for her to go there!!

So this post was a little random- I don't know how we made it from bronchs to eyes to MRSA but oh well- just wanted to keep you all in the loop!

A different kind of anniversary

Today marks the one year anniversary of our initiation into the neck breathers club. A lot has changed since then. I'll never forget how terrified we were when we found out Faith what getting a trach. I recently looked back at our blog entries from last June and July- Faith had an episode almost every day! We did everything to avoid the trach and g-tube, little did we know then that they were the best thing to ever happen to her. When Faith received her trach it saved her life (a month later when she became vented it GAVE her life).

The trach is such apart of her now- and of us. In a way it has become our identity- we now are in network of "trach families" who get together, e-mail each other to exchange tips and share challenges of raising a child with a tube in their neck. The trach doesn't even bother us anymore. We are scared for the day when she doesn't have it. So when is that day going ot come? Who knows...

Last year Faith's first ENT (ear, nose and throat) doc gave us the impression that she'd have the trach for about a year...he described her airway as "complicated" but the fact that she was on a high flow nasal cannula showed that she could make it without a trach in the not too distant future (the term "making it" is used loosely...having an episode every day is not "making it" in our book...) nevertheless it's been a year and Faith is no where near being decannulated (a term they use to mean without a trach..) Her last bronch was April- her new ENT said that her airway was still really swollen- he couldn't even see her vocal chords. We asked if this was very common- to be this swollen a year after intubation he said "no...I've seen it once or twice..." hmm... that's comforting. Like we said be for this isn't really surprising to us, nor disheartening- the trach we don't mind- now this vent on the other hand we'd give this up in a heartbeat!! Faith was another bronch scheduled for tomorrow- we'll see what they have to say this time.

So Happy Trach Day to Faith- and I guess to us as well. Today is a celebration of overcoming the challenges of taking care of a child with a tracheostomy. We did it! We're doing it! Wow. I never thought we'd become this comfortable or this accustomed to trach life. I am sure a year from now we'll look back and know even more than we do today. No this is something we never wanted to know about nor expected to, but when your trip to Italy is diverted to Holland sometimes you have no choice but to smell the tulips. :)

Happy 4th!!!

Mommy and Faith: All American Girls. Faith is officially 17months old today- awww... our little girl is growing up!
Happy 4th everybody!!! This is an exciting day- this is the first major holiday we haven't spent in the hospital- wooowhooo!!! I saw a shirt fI wanted to get for her that said.."I'm In-de-pen-dent" but I couldn't find her size. Oh well she doesn't need a shirt to say it- on this day we not only celebrate our countries' freedom but Faith's freedom from the hospital. Maybe next year at this time we will be celebrating freedom from tubes! ;) Have a happy holiday!

My newly found blogger friends have inspired me to try to figure out how to put videos of Faith on here- I can't seem to figure how to do it on the camcorder but using our digital camera I can do it. Sorry about the sound, but it's kind of fitting because Faith doesn't make noise anyway! Here's one I like to call giggles and grins:




This one is amazing to me because Faith is so "aware" of Elway- while she is a little overwhelmed by him in this video she follows him with her eyes. Whenever I cook I bring Faith in the kitchen and she ride on her Dora tractor- the whole time she is so interested in the dogs. Their water dish is right by her, which she thinks is really cool. What's also amazing about this video is how Faith rotates her trunk. This has been a huge PT goal for her- which she is beginning to master!


Faith is in the "dumping' stage. Very age appropriate we might add! :)

Faith slept the better last night than she has all week. She only woke up a few times- yay!!! The culprit was identified; Faith is growing pseudomonas in her trach. This strain of bacteria is almost a rite of passage for trach kids- almost every trach kid I know is colonized with it. I guess Faith just felt left out. We thought something smelled different this time, and it was. So here's to another drug resistant bug she's colonized with- yipee! ;)

Today is July 1st- you have no idea how much that freaks us out. We've had a lot of drama with the nursing situation (which I won't go into detail about....) but basically our goal was to find a skilled, reliable nurse this summer. In theory we had a good 2 1/2 months to become comfortable with them before the school year starts and we'd leave them alone with her. It's July 1st and we haven't had any luck. This comes as no surprise since we spent 8 months in the hospital waiting for nursing. As each day passes the knots in my stomach tighten- knowing that ours days are limited. I just wish we could drop Faith off at a daycare or hiring a nanny or something. In those instances you get to interview and pick a choose the people you want taking care of your child. Instead we are at the mercy of our nursing agency. There is a day care that's an extension of Children's who caters to medically fragile children- Medicaid would even foot the bill for Faith to go..but Faith can't go since she is colonized with MRSA. Which is very frustrating because the MRSA is in her trach and she is on a vent, so it's a closed circuit. Did we mention this daycare is right on our way to work? Rats. The only thing that helps me remain positive at this point is that there are 31 days in July. Ok minus today we have 30. We need a nursing miracle!!!!! (And while we're at it we'll shoot for the moon we need a NIGHT nursing miracle!)