Friday, October 31, 2008

Happy Halloween!

Why.....



Do I continue to torture my child.....




year after year....?


Because YOU are Wonder Woman....




And you are our super hero!


Wednesday, October 29, 2008

Letting it go, pumpkin by pumpkin

Dear Faith,

I don't know what it is, but I love pumpkins. I have to get my hands on anything and everything that is pumpkin related. So when your father and I decided to get married it was a no brainier that we would marry in the fall and have pumpkins galore at our wedding. In fact, I really wanted to get married in a pumpkin patch but your father, the voice or reason in this relationship, put his foot down, after all, "you never know what the weather is going to be like in October" (and I am glad he did b/c it poured all day on our big day).

I've dreamed of taking you to the pumpkin patch since were just a bumpkin in my tummy. Last year the hospital had a little pumpkin patch outside on the lawn. I really wanted to take you out but could not because you were in isolation. So THIS was the year we were going to take you to the patch. October has been a crazy month, and every weekend has been so busy. We planned our excursion for the third week of October. So of course that's the weekend everyone in the house gets sick. As I poured your daddy Ginger Ale and wiped your runny nose all I could think of were the rotting pumpkins and how every hour we were not there there was one less pumpkin to pick, one less pumpkin in pristine condition.

So in typical neurotic-mom-fashion I packed up the fam because WE WERE GOING TO THE PUMPKIN PATCH! In my head I envisioned you in an adorable fall outfit. The night before our excursion I headed out to Target to find this perfect outfit- the only holiday outfits they had had trees and reindeer on them (is it just me or does it get earlier and earlier each year)? This was the first thing I had to let go.

I also had very high expectations for pictures at the patch. I not only had you dressed in your perfect Autumn outfit in my head but had you smiling on hay bails, waving on tractors (since you have never waved before this was going to be your first time..) and a perfect family picture next to an assortment of fall decor.

As we drove in I picked out the perfect spot for hay bail pictures I noted to Brian that we'd hit it up before we left.

To my dismay you despised the pumpkin patch. The minute we set you down you started to bawl (this was a time we were thankful your cry is not audible). The sun was in your eyes, the wind was blowing dust in your face, the the crunch of the hay on your feet put you over the edge.

Not the day at the patch I had envisioned. Just a few pictures...that's all I wanted.... we quickly snapped some (as the batteries were dying) picked out a pumpkin (and no...they were not rotting like I had obsessed over the previous night- there were lots of beautiful pumpkins...we could have easily waited a few days to go and there would have been enough for us).

They were however, overpriced. Apparently your daddy and I are in the wrong business. If we had a patch of our own we'd break the bank just working one month of the year. I couldn't bring myself to pay $7 for multiple pumpkins, especially when they are $2.50 at Wal-Mart (Yes, I know supporting the farmers is worth it but I got to tell ya, we did the math and I think the farmer's at this patch are going to be just fine) so we decided to pick just ONE pumpkin and get the rest somewhere else (something we've yet to do) but I got to tell ya for someone who loves pumpkins this was yet another thing I had to let go.

By the time we loaded you back in the car and drove to that "perfect hay bail" spot we were all spent. I couldn't bare the thought of unloading the vent and all that goes with it one more time. So once again I just let it go.

As we drove away I thought about how this was never how I envisioned taking my child to a pumpkin patch. Towing a ventilator, caring an ambu bag was not what I had in mind. Then again during the very dark first few months of your life I could never imagine taking you to a pumpkin patch. Realizing this made me extremely grateful that we got to experience this with you.

All in all it was a successful trip. The fact that we even attempted to take you to the pumpkin patch was a feat worth celebrating.

Maybe next year we will get the shots of you sitting on a hay bail or waving on a tractor, and if we don't that's perfectly OK with me. You will always be picture perfect in my book, just as you are.

Love you my pumpkin bumpkin,
Mommy & Daddy too







Daddy, I don't think we're at home anymore. Is this Kansas?
Above: You're not going to leave me here, are you? Below: This is good as it gets.



Above: The scenery was the star in this photo session.


Below: We couldn't find anyone to take our picture (the ventilator has a way of repealing people) so we did it ourselves. Faith didn't get the memo to look up- she was still hoping someone else would come put us out of our misery and just take a picture so we could leave.

Daddy, how much longer is she going to make us do this?

Daddy's thinking the same thing...

Sunday, October 26, 2008




Dear Faith,


I follow a couple of blogs that post a weekly feature called "Not Me Monday." It's a fun little way to fess up to all of the things that make us human. Well this weekend you did something superhuman (by our standards) and we did something we weren't supposed to do, so I thought it would be a perfect time to join the Not Me Monday gang.




video



(Hmmm...did anyone notice anything?)

This is certainly is NOT a video of you crawling around, laughing, banging on your drum, hooked up to oxygen, and oxygen alone. Because WE would never take you off of your ventilator for 30 minutes without getting a doctor's order. ;)


And this is not what your pulse oximeter read after 30 minutes of you breathing by yourself....





(for those non-medical people out there these numbers are VERY good).


There are some other things I do not want to admit-

I did not drag my family to the pumpkin patch after the stomach flu ransacked our house for 2 days (pics to come...no..not of the flu of the pumpkin patch...) because it's all I wanted to do on my b-day.




I was not in tears today at the pharmacy because they still didn't have your prescriptions filled after I went there three days in a row and called before I went to make sure they were filled. You are not already out of some of your meds which does not make me even more of a wreck than I already am.



We did not take apart your crib this evening and you are not laying on the floor of your room on a mattress- (Kosovo-style) because this was not our last stitch effort to get you to sleep better.



Hmmm..and maybe this reverse psychology stuff will work on you tonight- and you will not get a good night's sleep tonight because Lord knows we don't all need it.



We love you, sleepless nights and all, little lamb,


Mommy & Daddy too.


Wednesday, October 22, 2008

The only letters we want to write are Zzz's!

My apologies for not blogging for a while. I've had so much I've wanted to write about. I wanted to write Faith a letter about how Brian and I recently celebrated our wedding anniversary (has it only been 4 years?)....I wanted to write about how Faith got a nasty GI bug and we had to take her to the hospital to get pumped with fluids..this all happening the day after I had surgery on my leg and Brian was sick....I wanted to write about how we took Faith to the Zoo and it was disastrous. I wanted to write about how excited I was when there was a front page article on Amendment 51 in the newspaper this past weekend (we know the family featured) and how outraged I was when I read this article. I wanted to write how our Medicaid has been suspended and we are receiving bills totalling in the thousands and how this has made us so much more passionate about 51. I've had so much I've wanted to say and no time or energy to do it all.


About a month ago I saw a story on the Today show about a man who abandoned his 9 children at a local hospital under the protection of the Safe Haven Law. The TV segment was full of people critisizing him and the local government for not bringing charges against him. My reaction was quite different. This man had lost his wife a year prior as she gave birth to their ninth child. My heart just went out to him. How overwhelmed he must of felt. How helpless. I can never imagine abandoning my children but then again I could never imagine taking care of nine all by myself.


This week we reached our breaking point. We would never abandon Faith in a million years but we have reached the point of total exhaustion and helplessness. I have not been blogging because it takes three hours to get her to go to bed. After that we have one hour (if we are lucky) to catch some Zzzz's. After that it's hours and hours of Faith crying uncontrollably, shaking the rails of her crib, pulling her trach and banging her head. The more she cries the more she produces secretions and needs to be suctioned. Her sats also drop and her pulse ox alarms. During this time we just sit there in tears. She will do this for hours upon hours. She cannot cry herself to sleep like most babies because her sensory system is so out of whack. We cannot let her "work it out" because she endangers herself. We've gotten to the point where we drug her every night but noting seems to help anymore.


This reaches far beyond toddler tantrums, this is a medical issue. For the past year we've discussed this with doctor upon doctor who usually brush this off as a phase she will grow out of. Faith has never been a good sleeper and is getting progessively worse. Fortunately she has a really great occupational therapist who DOES believe us and thinks this has a lot to do with her sensory problems. When she was born her nervous system was not fully developed. You can imagine being in the hospital for the first 14 month of life and being poked and prodded and hooked to tubes and monitors does not help this.


We are far from perfect parents but I do not think this is a parenting issue (although most of the people I talk to this about seem to think otherwise...) I welcome these people to spend a night with our daughter and then they can further criticize our parenting skills.


We can handle all of the medical stuff, we cannot handle it without sleep. The last thing I wanted to do was write another post complaining...but at this point I cannot write about anything else. We cannot do this anymore. I guess we are just asking for prayers, good vibes, whatever your thing is- we need all of the help we can get. It's getting to the point where the lack of sleep isn't safe for anyone.


Please bare with us during this insane time as posts might be a little sparse!
Jen & Brian

Monday, October 13, 2008

Joy, Unexpected

"FAITH is the substance of things HOPED for, the evidence of things unseen.”
–Hebrews 11:1

Dear Faith,


A few months ago a friend of ours asked me if you will ever be able to read. I am a reading teacher and the thought had never crossed my mind. If I were asked the same question a year ago it probably would have thrown me into a state anxiety as I would stress and obsess over what might lay ahead. A year later my reply to this was a simple, “I don’t know.” And I haven’t thought about it since.

I am very new to this journey and am constantly evolving not only as a parent but as a person as well. In the past year and a half I have learned (through the help of others) to take each day as it comes. Everyday we are happy with what we have (you are alive) and anything on top of that is just icing on the cake.

We never expected you to crawl. It’s not that we didn’t think you were capable of it, it’s just a way to cope when the future is so unclear. No, this is not a lack of Faith, I believe it is putting FULL Faith in Him that wherever this journey takes us, everything will be OK.


I woke up Friday morning like a child on Christmas. I couldn't’t wait to play with you and see you crawl! Although your “crawling” looks more like a frog trying to hop with paralyzed legs, it is such an extraordinary step. I can tell it takes so much out of you. Every reach looks exhausting, but you are getting stronger with each movement.

We are so proud of you Faith. Like your Aunt Libby said…there is much more joy to come!

Love you,
Mommy & Daddy too.

PS: You need to get better again missy! Over the weekend you got really sick (this time worse than the last time). We had a scary night where your sats dropped and you were pretty dusky. For a while you were on twice the amount of oxygen you normally are. Once again you are on an antibiotic, which hopefully will clear it up- your mommy and daddy are very tired and need to sleep (and so do you).



********************************************************************

Thank you to all who have left comments and sent e-mails congratulating Faith on her big accomplishment. I said this at Faith’s first birthday party and I will say it again. The saying, “It takes a village to raise a child” has never rung truer. In a way each one of you has had a hand in raising Faith. The fact the people actually care about our daughter means so much. So thank you!!!


Holly- thanks for you interest in helping special families! I would love to talk to you more about what we have done in CO. If you get time shoot me an e-mail @ jen22at@hotmail.com (I tried looking for yours but couldn't find it). Thanks!

Thursday, October 9, 2008

A day for the books

Dear Faith,

Today was an exciting day.

During occupational therapy it "looked" like you did the sign for "more." We have been working on this for a year now. The fact that you put your hands together when prompted for "more" was such an accomplishment!

And then....

This evening after dinner I went out to run a few errands. I got a call from your daddy (usually this means he can't find something....) I dug to the bottom of my purse (which always takes the entire rings..) and answered. I was in shock. I rushed home. And I saw it for myself.......
video


Yes, it's true.

Tonight you crawled your first crawl. This is something we thought you'd never do. It's something we let go of a long time ago. It's something you proved us wrong on. You go girl!

Here's another shot just in case you don't believe.....
video

What an exciting day! We could not be more proud of you, Faith. Today truly is a day for the books. Who knows what you WILL do next!

We love you little crawlie bug,

Mommy ( & Daddy too).

PS: It's time for you to get off the vent now girly- or it's time to get a longer extension cord! ;) (Advice, Janay?!)

PSS: Our apologies for the poor video quality. We are still living in the stone ages of the digital camera world.

Wednesday, October 8, 2008



"This is my Father’s world, and to my listening ears
All nature sings, and round me rings the music of the spheres.
This is my Father’s world: I rest me in the thought
Of rocks and trees, of skies and seas;
His hand the wonders wrought. "

-My Father's World



The Hymn above is from one of your favorite CD's you like to listen to. There is something about that song that gives me chills.




Dear Faith,


It’s been over a week since I decided to write to you, and ever since I've been putting off writing this first letter. I have a million things I want to say to you, donzens of letters have been running through my head. Where to begin? Well, the truth is this is not really the beginning. I've been writing to you for 20 months now…wow I can’t believe you are 20 months old. Soon we won't refer to your age in months...soon you will be 2! I'm not going to start with the sappy how-you-were-born story, you already know that one all too well. I am just going to pick off where we are right now.


This is what I want to say to you today.....


I believe that all children have a connection with music. It's something ingrained in them but as they grow their world becomes filled with noise and they stop listening. This is not true for you. Your relationship with music is uncanny.


Perhaps it begun when you were in my tummy. I remember the long (but not long enough) days spent in the hospital before you were born. I would often place the hospital bed TV remote on my stomach and have you listen to the hospital's "relaxing music" channel. I could not control what was going on in my body, but I thought by doing this I was somehow helping you (and at the time that thought was helping me).


Or perhaps your special connection with music is because of the continuous melodies we played for you as you grew in your isolette in the NICU. I think we drove the other parents and nurses nuts with the constant classical rendition of "Kumbiya" on your Hello Kitty boom box (are they even called boom boxes anymore? Boy I am out of touch). Once again, I think the music was more for us than for you, but you liked it too.


Maybe you are comforted by music because during the eight months you spent at The Children's Hospital, every morning before I left for work, I would put one of your favorite CD's on repeat, thinking the music would keep you company until I returned.


Now you are 20 months old. Whenever a note is played you immediately stop what you are doing, become alert and look to find the source. When I cook dinner while watching the evening news, whenever a commercial comes on you are mesmerized. When daddy's cellphone rings and plays a song you are transfixed. It's the only way we can do your trach care anymore. You throw a fit when we change your trach ties, but if we sing, you stop. You can pick out a note in the nosiest of environments. If there is a tune, you are attentive. You don't clap your hands, you don't dance, you don't even smile. Your entire body becomes paralyzed, your eyes widen and you just listen.


You began music therapy last week. I worked all summer to try to get this set up for you. We decided to start it even though we have not been approved for the funding. Watching you entranced with the music was worth it all. My favorite part was when the therapist played her guitar and you put both hands (and Faith, you never use both hands for anything) on the guitar base for the entire song. Maybe you liked feeling the vibrations, I think you were feeling the music.


Music is your gift Faith. It moves you in ways words cannot describe. You have used your gift to teach me how to slow down and listen to the music in my life. We come from a long line of "doers." People in our family are always rushing around doing "things." You reminded me to slow down and listen a few weeks ago when we were in the store for the first time together; I was ready to go and headed for the check out. As we passed the music-playing end cap, you heard it and were hypnotized. I saw this and stopped. Today, when we were walking home from the park I was tired, hungry and ready to be home. As we walked by the high school marching band you turned your head to hear. I saw this and stopped. We sat there for a little while just listening to the band as the blowing leaves applauded.


I cannot wait to take you to the symphony. Your dad and I aren't the symphony-going type of people, but I think you could teach us to appreciate it. Or maybe you'd enjoy one of those laser light shows at the Planetarium that die hard Pink Floyd fans go to and are often "on something." We aren't those type of people either, but there's always time to experience something new.


My wish for you is that you will always hear the music. I hope you are just as captivated by every note you hear 10 years from now as you are today. Please keep reminding me to slow down and listen, for I have become like the others and have let the noise of life get in the way of the simple pleasure of a song.


But now it's time for bed my princess. Your Hello Kitty CD player is cued and will soon replace the noisome hum of your ventilator. Goodnight my little Mozart.


I love you,


Mommy (and Daddy too)

Thursday, October 2, 2008

A season of change

Look! We're actually married!! And we got to act like a couple today! We went to a wedding up in the mountains which was a lot of fun. We didn't think we were both going to be able to attend but things came together (imagine that). We joked with friends that no one was going to believe us that we actually left Faith for the day so we had to take a picture to prove it (and no, there is not ventilator is the background).


It was so nice to drive in the mountains and see all of the fall colors. It looked as if God took a paint brush and covered the trees with gold. Fall is the season of change, so it is timely that the way we share our lives is changing as well.


I've been contemplating what to do with this blog for some time now. Sometimes I just want to stop it. Other times I feel like I have so much to say and there is not enough time in the day to write it all.

As I wrote a few weeks ago, I often feel silly writing about the every day stuff. I often feel I am complaining (and yes, I know it's perfectly OK if I am). I also wrote that although the voice of my writing is directed at you, I am writing for Faith. I have so much I want to say to her, so much I want to tell her, but it just doesn't seem like she understands. A typical baby interacts with people by cooing, babbling, and imitating. With Faith, communication isn't reciprocal nor does it seem like it is understood. The only "break through" we have ever had was when we asked her "Where's Elway?" and she looked for him. Remember about a month ago when I wrote how she "waved" goodbye? If that was really a wave it was the first and last time she's ever done it. Her therapists' agree that she understands more than she can show. It appears as though the wheels are turning, she just doesn't have the motor plan to show what she is thinking.



Medically Faith cannot communicate because her airway is so damaged. Unlike most other kids we know with trachs, Faith does not have an air leak therefore does not make any sounds. I find that sometimes this gets in the way of how I interact with her. I do talk to Faith, but sometimes I find myself just sitting next to her and a long time will pass before anything is said. No doubt, this is how we communicate. I have so much I want to say to her. I often find myself talking to "future faith." A Faith without tubes and machines. A Faith who understands what I am telling her.

Earlier this week it came to me. I am going to change the format of this blog and tell Faith everything I am thinking. Instead of "blogging in my head" I am going to blog to Faith. Faith does not have a baby book (I found it rather depressing when I begun to fill out a generic fill-in-the-blank baby book...on the first page there was a section for baby's birth weight with blank line that ended with pounds. I took a pen, crossed out the "s" and sighed) but she does have this blog. As you all know, this blog was originally set up to inform people on Faith's status when she was in the hospital. Now, it is my gift to her.
While I may not write this way on every post, from now on the majority of my posts will be written letters to her. In no way am I trying to be the next Maya Angelou, nor do I claim to have such profound thoughts that I feel so entitled to share them with all of you. I am just a mom who wants to talk to her daughter. I am not out to teach her life lessons (trust me, I am still learning my own) but am seeking to have a conversation with her. Who knows if she will ever understand what I say or write. But no one will ever be able to say I didn't tell her.

Although my thoughts will be directed at her, by no means do I intend not include all of you. If I didn't want you to read them, I wouldn't share them with you. Feel free to continue to comment and speak to us, as it helps to have some form of reciprocation.


Thank you for continuing to be a part of our lives as we continue to evolve on this journey.


Brian and Jen :)