Our Moment

When we learned we were going to have an extremely premature delivery we knew we were in for a rough ride. Once we arrived in the NICU we were under the impression that our baby would learn to breathe, eat and grow and we were going to take her home around her due date- obviously this was not the case for us....then we learned that she would need more support...a few tubes for a couple of years...then she would go on to lead a normal life. We are learning that the affects of prematurity last far beyond the NICU or a few years with breathing support...

All parents who have kids with special needs have their moment. Whether it be in a doctors office when a diagnosis is given or the living room when they realize their child is needs beyond that of a normal child. Remember the scene in Mr. Holland's Opus when the mom drops a pot on the kitchen floor next to her toddler and he doesn't startle a bit? (they soon learn he is deaf...) we had a similar moment this weekend.

We took Faith to a graduation party this past weekend for a friend we met in the hospital who is fighting cancer. Faith did pretty good at the party and looked as though she had a good time. She did not "shut down" as she typically does when we venture out to the outside world which we took as a good sign. When we came back it was time to put Faith to bed. We knew this would be difficult- every time Faith goes anywhere (to a doctor appointment, outside on a walk, etc.) she does not settle down. In fact she gets wild! I remember after her first birthday party she didn't sleep for a week! This night her not settling down was different. I left her side to go prepare her formula when glanced at her in the video monitor and saw her banging her head against the crib mattress. It wasn't just the banging that bothered me- it was the repetitive motion, the way she was inconsolable when we picked her up, the way she was in a world of her own. We've been around enough babies to know what Faith was doing was not typical.

Brian and I have both knew something was going on neurologically with Faith for a while now- it's something we've never really talked about until that night. Several health professionals have also commented- her pediatrician noted her poor reflexes and asked if she has ever had an eeg or head ultra sound, her OT has picked up on her repetitive behavior like spinning wheels (they call this "stimming....")

When a baby is born prematurely their nervous systems are not fully in tact. While other babies's nervous system develop in the comfort a their mother's womb, preemies are forced to develop these organs in the outside world. As you can imagine this is a shock to the system for such a tiny, under developed baby. This results in sensory issues and that's what we see in Faith. The sensory scale has a wide spectrum- one end severe autism, the other some minor sensory sensitivities We are not sure where Faith fits on this scale, but we do know she has some form of sensory processing disorder. When she gets over stimulated she doesn't know how to take in all of the information, organize it, and make sense of it. Instead her body goes into hyper defensive mode. She is also extremely hyper sensitive to textures and touch. She does not like to cuddle, does not make eye contact (this can be due to her vision loss) and doesn't get typical baby games like peek-a-boo.

That night Faith wasn't the only restless person in the house. My mind raced with what if's and what nows.... we can deal with ventilators and feeding tubes but this stuff scared us. The thought of how long term this could be was over whelming, the fear of not being able to give her all she needs consumed us. How are we going to do this?

The following morning Brian appeared from Faith's room beaming like a proud father at a high school graduation, "I was sensitive to Faith';s sensory need last night," he said "I figured out a new way to suction her where I don't need any light."

Ahh...ok.... I sighed with relief..how are we going to do this? Like everything else we've encountered-one step at a time.

And we are going to do just fine.

:)

As if this blog wasn't over stimulating enough....... we decided since we've started a new chapter in Faith's life (ok...actually a new book!!!) it was time to take the blog in a new direction. We are still working out the kinks- so pardon all of the dead links- we'll have this all updated soon!

The Next American Idol

Watching the Idol finale- I have all I need: The remote, my microphone, my "adorable idol" onesie..and oh yeah my phone...1-888....What'd ya mean I have to vote for a David..I thought Daddy was singing! Yes it's true- Faith has been a fan from day one. Sad to say but she's never missed an idol this season...(her night nurses at TCH can testify to that) so of course she had to get all geared up tonight. :) Seriously though we think she is a little idol herself. Tonight she paid no attention to the TV until one of the finalist started singing and she was enthralled. Every other night we change her trach ties, which is not one of her favorite things. We've recently discovered that if we sing while doing this she instantly calms down. It's kind of a neat little trick- it's like night and day! Maybe this is b/c from the time she was in the NICU we've had a constant stream of music in her room or maybe babies are just naturally soothed by melodies..or perhaps we have a budding little idol one our hands who one day will make one heck of a story (we can see the producers pitching it to the networks....) whatever it is she gets our vote!

Fun in the Sun

Since Faith isn't too fond of walks today we ventured outside to our backyard. Faith did surprisingly well!
Where two or more are gathered there the boys are. As you can see we come as a packaged deal.
Lookin' Sassy!

Boy all that sun made me exhausted! Time to watch my shows!
What a day!
We just wanted to share these pictures with you. Are we normal or what? ;)

Toothers!

We rarely get a peek inside Faith's mouth (due to her oral aversion the only fingers she lets in are her own) so I couldn't resist snapping a shot of her little toothers coming in. She has three on top and three on the bottom. Alright Faith, now when are you going to use those for something nutritious?

Tomorrow is a special day for us- it's Faith adjusted first birthday!!! If you are not in the preemie world this might sound a little weird to you but here it goes: Faith's originally due date was May 15th, 2007. Although she was born February 4th, developmentally and gestationally we count her age from her due date- so just think of the 3 1/2 months before May 15th as her being in a womb outside the womb. Nevertheless it's a good excuse to celebrate 2 birthdays!

Taa-Daa!

Greenwood K-8 6th grade art students posing with their mural. At Children's each floor is a certian animal, the 8th floor is the moose floor so they painted a moose! We need to give credit to Faith's nurse from TCH, Kim (pictured on the right)who came up with this idea months ago (Thanks Kim!!!)

Yesterday was a very special day. Brian's 6th grade art class presented a mural to the 8th floor at the Children's Hospital. The picture now hangs across from Faith's old room. The is special not only because Faith was the first occupant in that room but it was a place where many memories were made. We spent many firsts there- Halloween, Thanksgiving, Christmas, Faith's first birthday- not many people can remember exactly where there child was when they first discovered something, (like the first tooth or the first time sitting up...) we can, we were in room 827. Now it's like a part of Faith will always be on the 8th floor.

The day was also special because it was like our two worlds from the past year came together. Some of you may not know this but Brian and I both teacher at the same school (no that's not where we met, we always get asked that!) Our school has been extremely graceful and wonderful to us throughout this whole process. There is no way we could go through what we have without their support and flexibility. The faculty and students have all been integral parts of getting us where we are today. I don't think 15 minutes goes by in the school day when another teacher or a student asks, "How's Faith?" The Lord knew what He was doing when three years ago I drove to interview at a school that was 45 minutes away from our house and only 5 minutes away from the future home of the new Children's hospital. Who would have known that this school would also be in need of an art teacher a year and a half later! His divinty never ceases to amaze us!

Brian was very proud of his students- they did a great job. Can you believe they painted that all by themselves? The only part Brian had in it was painting the butterfly (for you know who!) The reception was very nice for the kids- we could tell it made them feel very special. Three of Faith's primary nurses were there, which meant a lot to us. It was a perfect way to give back to a place that has done so much for us!

So if you're ever at Children's (hopefully just visiting...) head on up to the 8th floor and right across from a little place we like to call home hangs a mural that represents the people who have stood behind us every step of the way!

Thanks for stopping by!

Brian, Jen and Faith :)

Happy Mother's Day!

You know you are officially a mom when all you want to do on Mother's Day is take a nap! Well there were no naps to be had (maybe next year?) but we still had a great weekend. On Saturday I did something very un-Jen like- it didn't involve a hospital or work! I went to a Mother's Tea put on by Cerebral Palsy of Colorado. It was really neat to be amongst such inspirational women. Everyone at the table had a special needs child, every mom was my hero. I'm not saying this about myself but I think God truly chooses the strongest, most courageous women to be parents of children with special needs. As I looked around the room I was truly in awe of the strength that was before me! It was also neat to connect with people and various organizations we want to get involved in to make the lives for special needs kids and their families better (I didn't forget about Safe Harbor...we still have big plans for that one!)
It was not only great to get out and do something different for a change it was a breath of fresh air being around people who really "get' what we go through. To put it simply, I was with my people.
Well cross your fingers and your toes because today Faith and I are going to go somewhere that doesn't involve her being poked or prodded- we are going to a hospital, yes but for non-medical related proposes. Brian's 6th grade art class finished the mural and will be presenting it to the Children's Hospital this afternoon. Faith and I (and nurse in tow) are going to make it to the reception- here's to a smooth departure!
We'll take pictures!
Jen :)

A tiny bump in the road

On Tuesday Faith and I had our first none medical trip into the outside world planned. I was excited to taker her somewhere other than the doctors office. We were going to speak to a group of women about prematurity. Wouldn’t you know it that that’s the one day Faith has an issue!!! We’ve been home for 4 weeks, everyday has been fine and the one day we plan to go somewhere something happens- that's our life. Well it ended up not being a huge deal but I was a little freaked for a while. Faith woke up Tuesday morning with blood around her trach site. Her trach ties were covered and every time I suctioned I got blood. Other then just being messy Faith seemed quite content so we knew she wasn’t in big trouble. Nevertheless the docs were concerned so we took her in. At Children’s they ran some labs, which all came back negative so that ruled out illness. She required a lot of suctioning the night before which probably caused some trauma to her airway. Last night we realized that we’ve been suctioning too far. The catheters we use at home are different than the ones we’ve been using at the hospital so we’ve been going passed her trach which was causing irritation, thus the blood. Poor Faith! Well we’ve corrected the problem and Faith is good to go now. Through this all we’ve discovered another inconvenience about having a medically fragile child- we can’t just get up and go whenever we want. It's virtually impossible to take faith in the car by yourself- there’s just too much equipment. So when the doc called on Tuesday and wanted us to come in and I was by myself and didn’t know what to do. Fortunately we work at a place that is very understanding and Brian got off a little earlier and came with us. Of course if it was a big emergency we would have gone via ambulance (we’ve had plenty of practice at that) but this was not the case. I guess it just made us feel a little trapped- we long for the day where Faith is off of the vent and we can get around with her more easily!
So that's about it. So we didn't mean to scare you all on Tuesday (word quickly spread that Faith had an unplanned trip to Children's and people freaked...) this is probably a normal response knowing our history, but hospital trips have become routine. It was nice, however, not to have to stay! ;)
Brian, Jen and Faith

Another sleepless night, another epiphany. Somewhere in the witching hour (from 12 to 3 the time when you can count on Faith being restless, every night) in occurred to me; we're actually doing this, and we're doing it pretty well.

Just when I thought she was going to settle down and I was going to be able to finally get some sleep, her feeding pump went off- I got up to switch it off when I realized I left the medicine port open on her feeding tube, thus all 180ml's of her feed was in her bed. Rookie mistake...I thought. Time to strip the bed, change her clothes, and restart her feed. As I was threading her ventilator tubing through her PJ's I remembered how this would happen almost every feed the week after she underwent her g-tube/trach surgeries. "I can't do this anymore" I cried to Faith's nurse as I was covered in her stomach contents. "I can't take care of my own child..." Flashback a week earlier when Faith's neonatologist came in and told us that he had scheduled the tracheotomy surgery...."No!" We cried..."No....we can't take care of a baby like that....." One of Faith's nurses reassured us.."YOU are going to be the expert...YOU are going to be able to come back a year from now and teach us all about trachs and g-tubes." As nice as this sounded I didn't believe her...there's no way we could learn all there is to learn about taking care of a medically fragile child.

We've had a lot of visitors to the house lately, most everyone comments on how much we know, how amazed they are that we do all we do. The comment always makes us feel a little uncomfortable...of course we do all that we do....how else would we live? It's the typical stuff that scares me...feeding a baby food with a spoon, burping them, giving a bath in an actual bath tub.... We can change trachs, suction, pull out a resuscitation bag and start bagging Faith without blinking. It's the normal stuff like changing crib sheets that gives us headaches.

It's 2:05 as I struggle to get on end of the crib sheet over the corner I glance at the IV pole attached to Faith's vent...time to change the inhalation bag that drips into her heater....I'd much rather do that..I call to Brian in the next room.."honey can you please help me with these stupid crib sheets.." He groggily stumbles in, tries to force the corner end of the sheet over the edge
sees that there is water built up in the vent tubing, stops what he's doing and disconnects the circuit and empties the water. It's ironic- the things we'd rather do. For the life of us we can't figure out why crib sheets are so difficult to put on and have to be so tight.......oh yeah....suffocation hazard.....risk of SIDS....things we don't have to worry about b/c our baby breathes through her neck on a machine....for a moment we wish we were back at the hospital, where there was an endless supply of sheets and they could easily fit over any bed... Ok that's not realistic..I guess we're going to have to doing this normal parenting stuff on top of everything else...we'd rather just have to do the everything else...who wants to be normal anyway?

It's 2:20 now...I'm suctioning Faith as Brian attempts to put the sheets on our way- he rips the sides, and says, "I'm done!" He takes her feeding pump, dumps the formal in, primes the line, hooks it to Faith's stomach and heads back to bed. Phew.....those sheets sure we're hard.

Faith may be a Rockies fan but she's a Yankee at heart (that and she loves playing with daddy's hat!) This is a huge milestone- a month ago she'd freak if you'd put something on her head (yes, even those pictures of her with her sun hat on were very well planned- she'd usually rip it off the second after we'd take a picture.) Anyhow.... Faith has come along way!!! Our days are pretty busy- between the equipment company people, physical and occupational therapists, and the nurses it seems like people are always coming and going. This makes Faith feel right at home (she's used to a lot going on around her)

If one things for sure the dog's life have sure been upgraded!!!! (We've also learned what poor dog trainers we've been- the dog whisperer would be appalled at what goes on in our house. (Let's just say there aren't many boundaries..yes we know we need to work on this before Faith turns 3.....or else she'll be walking all over us too!)Nevertheless we are one big happy family.

Thanks for checking in,

Brian, Jen, and Faith (and Buffalo and Elway too....)