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


Jen said...

You left a post tonight on my blog(the tale of two coins) and I wasn't sure who you were. So I checked out your blog tonight. I have just spent the last few hours reading your entire blog and reading about your adorable daughter Faith. She is so cute!! I too want to thank you for sharing your story with us bloggers. I think that you are both great parents. You have been so strong through the last year and a half. I can't imagine going through what you, your husband and your perfect little girl have gone through and the toll it must be putting on you as well. I just wanted to tell you that I think the two of you are great parents. I too am in the education field, actually early childhood is my specialty. I don't know many people that would be able to do what the two of you have done for Faith. I just wanted to tell you not to give up and that you are not bad parents, you have been through alot and you are tired. I'm sending you whatever you need to help you get through this difficult time. Prayers, good vibes, good thoughts, healthy thoughts for your entire family. Whatever you need you have it from me. Remember you are great parents and your daughter is beautiful.

Marissa said...

OMG Jen, I am so sorry to read all that you are going through. Please never feel you need to apologize for not blogging. This is your world and we are privelleged to peek in every once in a while.

I too can empathize with the man in Nebraska with the 9 kids and I don't have nearly as much going on as you do. It is so hard to keep it going day after day, especially on little to no sleep and with little to no outside help. And add to it the fact that you are worried about the health and well-being of your little hard.

I WISH we could plop our kiddos in their cribs, turn out the light and leave the room like most "normal" parents, but we can't. I was just telling my mom what an ordeal it is to get Marissa to sleep for this very reason. These kids are attached to machines with tubes and wires(Faith's actually helps her breathe for Pete's sake!) and if we let them "work it out" as you say, they really CAN enndanger themselves (stragulation hazzards).

What a shame that people who know you choose to judge your parenting abilities before they have walked a mile (or even an inch) in your shoes. I for one know that it is definitely not a parenting issue. There are just some things that are out of our control as parents.

And Medicaid suspended?!? What the ****?!?

Please know that I am sending out massive amounts of prayers and good vibes for things to turn around. My heart breaks and I am crying right along with you my friends. Please (and I'm not kidding) let me know if there is ANYTHING I can do to help you in ANY way. I will do all I can.

Lots of Love,


Hope said...

Bless your hearts. I'm sorry. I can't imagine what you two are dealing with. If I lived closer, you bet I'd be helping you any way I could. You're right, you can't do it all, who would? You basically have a PICU set up in your home and are required to keep your own baby alive and thriving. It seems whenever something good happenes for Faith (ie crawling) something bad soon follows. It's always 2 steps back. I would call her doctors, make them listen. (But I know how some doctors can be......)

I'm thinking and praying for the three of you. I feel horrible that I can't offer more than encouraging words and prayers.

Anonymous said...

Hi Jen and Brian,
This is Kristin (NNP from way back in the day at St. Joe's). I've never stopped thinking about the three of you. I have been checking in on Faith every once in a while since she left St. Joe's. I have wanted to leave you a comment so many times, but my google account was acting funky and I couldn't leave one without a password, so I was pumped when I saw that I could leave one "anonymously". Faith has definitely come a LONG ways in the past year and most of that progress is because of the two of you. You have been such dedicated parents from the day she was born!
I can sense the exhaustion and frustration in your blog today, and rightfully so. I can't imagine not sleeping night after night. There comes a point where you seriously cannot do it anymore. I don't know what your current nursing situation is, but if you're looking for more help, let's chat.
All the best,

Anonymous said...

I'm so sorry. I know how difficult life is with a "normal" GOSH I HATE THAT WORD child. It takes me an hour to put him to bed and he has no issues.

I can't even fathom your situation.

Please know that you are in my prayers and in my thoughts. I hope you find a solution. I wish I had the answer for you.


Rachel Marini said...

Jen, my heart goes out to you and your husband. I know what it's like without sleep and it's NOT good- especially with you having to get up and go to work. I have been praying for you guys today and hope that some help comes your way. I'm not sure where you live, but if we lived close I would be more than happy to come out and do some nights for you all. Every little bit helps. Hoping that things start to look UP for you all and Faith.

Anonymous said...

Jen and Brian,

I am so sorry this time is so hard and that you guys are done and exhausted. I want you to know that John and I are walking with you, we love you so much and we hate to see you both so tired. You two are incredible parents who have done the most amazing job with Faith. She is a little angel who needs a lot of love and care and you are two wonderful parents who need rest and need a break. Do not be hard on yourselves, you are doing an absolutely amazing job with her! Please know that we are praying every day for you, and we are here for you if there is anything we can do. We would be happy to help in any way that we can. We love you!! Katie & John

Daryl and Sara said...

Jen and Brian,

We pray for you both (and Faith) every night, and we will continue to do so.

Thanks for being two of our heroes.

Daryl and Sara

Dana said...

Jen and Brian,
Your doing a wonderful job with Faith. You're doing your best. She's grown so much and you've all come so far.
I will pray for you as well. Don't give in. HE will give your the strength you need. I am not sure what you believe but I need to be reminded often that I can't do it without GOD. We try to do it all as parents and we need to just turn it right back over to HIM.
I wish I was there as well.
KEEP talking until you find a doctor to listen to you. Perhaps at a developmental clinic? Someone out there can help you.
You are amazing parents!
Warm Wishes,

Tina said...

Jen and Brian,
I have no idea how you can do it, day after day of no sleep, work, Faith being sick, the two of you being sick, insurance companies, the list goes on and on. I am so sorry to hear that you still haven't gotten sleep, well not just sleep but rest. Sure you've gotten a few hours of sleep here and there since April, but you haven't gotten real rest in such a long time. That is my main pray for you that the Lord would bring rest to your souls, to your family and to your minds. You two are amazing parents and anyone who would question that must not fully understand you. I am also praying that someone would finally listen to you that this is not just a normal sleepless baby. And if they don't want to listen you should invite them over for a sleep over with Faith! I just wanted to give you this verse, (I cut and pasted it from a very great blog post I once read!) I hope it can be of some encouragement to you:
"The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; His understanding is unsearchable. He gives power to the faint, and to Him who has no might He increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint. "
(Isaiah 40:27-31)
Sweet dreams,(I hope)

Anonymous said...

God grant Faith peaceful sweet dreams every night, incredible 24/7 nursing coverage, good health for all of you and the govt. to pay the bills like it better. I'm praying, praying, praying for you.
Mary T.

Anonymous said...

Happy Birthday!


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