A New Year

This should definitely prove to everyone that blogging is not for me. It's been four months since my last post and since then so much has happened.

Claire finally came home a week before Thanksgiving. Our wonderful case worker at the hospital was able to have all of our home health equipment and accessories come from one company, which makes it less of a headache...sometimes. She was also able to find a home nursing company willing to take on our case. Since then we have found a wonderful nurse to cover three day shifts (while Adam is in class), a nurse for the other two weekdays (not sure about her yet) and two days a week overnights are covered. It was an adjustment to get used to, but a relief that we didn't have to have family stay with us in order to have care for Claire.

I'm still struggling to get us approved again for medicaid. That was cut off in December due to us making about $200-500 too much a month. The waiver programs are great, but it seems forever to receive approval. I have pre-approval for most, but for some aspects of the medical supplies, the provider is getting antsy and is looking for me to pay. I hope they, and the nursing company can wait one more month. I figured out the cost for our portion of nursing after United Healthcare pays their part, $2002/month! I cannot afford that on one paycheck and a husband going back to school.

Oh yes, we decided that since the job market was not improving as hoped that we would send Adam back to school for a bachelor's degree in Industrial Design. The program will take him a good two years, so he should be done by the end of 2011 (fingers crossed). The first semester went really well and gave us a chance to meet the amazing, supportive people who will be teaching him. They were more that understanding and encouraging when he could not attend class due to Claire's surgeries, set-backs, and release from the hospital. His second semester just started and we are feeling optimistic.

Getting back to Claire, we had our first pediatrician appointment the day of release, which only led us to our first opthamologist appointment less then a week later. The diagnosis was an unexpected one, bi-lateral cataracts. Within the next two weeks, both eyes had been operated on. Since, things have gotten better. She has started wearing her daily contacts, which is not a fun battle. It appears that she is seeing more, but we are set for one more operation this Friday, to remove some scar tissue from her left eye. Not uncommon, but still nothing I am looking forward to.

Her development is slow, but progressing. A physical therapist comes to the house twice a week and a occupational therapist should hopfully be starting once a week very soon. We have another swallow study set up for next week to determine what types of solids she'll tolerate orally. I'm still struggling to get her take anything orally. My minor break-through came at the beginning of December when she started sticking her tongue out on her own to taste the food. It takes about 45 minutes to get two small spoonfulls in her, maybe. :-)

Overall she is the joy in my life. I couldn't ask for a sweeter girl. She doesn't complain, she's self soothing and entertaining, but that doesn't stop mom and dad from absolutely spoiling her with our attention. Saturday mornings are the best when you can put her on her travel tank, take her down stairs and read to her while sipping my morning coffee. Now that she's home our family feels complete.

Fingers crossed that I remember to post again after this week's surgery, lol maybe we should cross our toes too.

Another update

Claire has been doing great since her last surgery. Feedings have been going well; never knew I could be so happy about poop. She managed to get an upper respiratory infection, but is being treated and seems to be doing better. Adam and I are much more comfortable with trach and G-tube cleanings. Adam did a fantastic job changing Claire's trach on Tuesday. I'm still really nervous about it, and partially avoiding the situation. Last night while doing cleanings with her primary her trach came out and I almost fainted. She got really red in the face, but seemed to recover without a problem.

She's being so well just on CPAP that I wouldn't be completly surprised if we were able to ween her off of it before leaving the hospital. I am not placing any expectations on it, just a wishful hope. Still no word on when we might expect her home. The doctore's aren't ready to discuss it yet. I can't believe she's 3 months old already. She's getting so big and really developing her own personality. I just hope she starts smiling some more soon.

The post

Our Dearest Claire ~

I want to start with a promise, I promise you that the world isn't as cruel as it seems to be right now. The world is actually full of absolutely amazing and phenomenal things that will do nothing less for you than confuse, contort, mystify, amaze, amuse, and down right make you cry with every ounce of emotion you can muster.

We have been there from the beginning, through every tear and every ounce of fear and pain you've had to endure, your mom and I will always be there. You have shown us the true meaning of strength and perseverance, never wavering and always fighting to see what happens next. Next Saturday you will be 12 weeks old, and as much as I hate to admit it I remember the minutes and seconds when we all, most especially you, fought for 12 hours old. You made that goal, and then it was 12 days, then 3 weeks, and now almost 3 months later we're looking forward to 3 years. I have no doubt that all the goals you set in life will be conquered and reset in much the same stride as your first 3 months.

It won't be like this for long, I promise it will be a memory held close to everyone's chest before we know it. We do have a long road to travel, but soon enough we'll be going to the zoo, and museums, and baseball games. Even sooner after that you'll be riding your first bike, climbing your first mountains, and watching your first elk walk across the street in Estes Park. There will be tough days ahead, there is no doubt about that, but those days will be the bread crumbs of your life. Someday you'll follow them back to the very first day and see the truth in the quote "What doesn't kill you can only make you stronger." We all follow that mantra, but few have the experience to truly live it.

Claire, I have never seen a miracle and can't always believe in them, but if I were to define what a miracle means to me, the definition would simply be "You." I have seen many amazing things in life so far and am sure to see more, you have undoubtedly plucked the brass ring permanently from the rest of my life. You've given me a sense of the world, you've shown me how fragile it can be and how much you have to love it in order for it to make any sense. One of my favorite quotes of all time happened just this year from an amazing man, Coach Don Meyer. He has shared your path in his own life, overcoming great odds at even greater torture. I hope that these words ring in your head for many years to come as they are in mine;

"Peace is not the absence of trouble, trials, and torment...but calm in the midst of them" ~ Coach Don Meyer

You have proven those words to be truth down to their very root, you have lived those words, and I know you will continue to do so. I look forward to the days ahead of us, no matter how they happen to unfold, we will all be there with you and for you should you ever need our strength, as I know we will need yours.

Day in and day out forever, Claire, you are everything to us. The days of joy and happiness are there on the road ahead of us, it may be hard to see them right now, but I promise that it won't be like this for long. Happiness isn't always supposed to be easy, right now we wrestle every ounce of it out of any situation we can. You are the reason that is possible.

You are our love, our heart, our one and only sunshine, and our reason to believe in hope.

Love unconditional and unending,
Daddy and Mommy

http://www.youtube.com/watch?v=-FPI8gV2A60

On the road to recovery?

Thursday's surgery went really well. Claire seems to be doing so much better. In fact they started feeding her again yesterday and she's already pooped. Ah, the things we get excited about as we become parents. She seems so much happier not to have that breathing tube in her mouth. She's definitely smiling on a more regular basis. Adam and I love to watch her play with her mouth. Her lips and tongue are so new and exciting to her, it's adorable.

Despite her strides after recovery, I am not getting overly excited. The last thing I want to do to myself is start thinking she might come home in the next month or so. I don't think I could take the disappointment of it not happening. So it may sound calous, but I want to stay realistic. There's still a chance something else could go wrong. I hope to God it doesn't, but you never know.

Yesterday, Adam sent out and posted the link to his website, http://askusandshutup.blogspot.com/2009/08/letter-to-our-daughter.html. It contains the sweetest, most honest letter and video. Adam put them together out of the love he has for Claire. I'm jealous he's able to write so well. I feel I should do something similar, but I can't imagine what to say. He said everything. I know it won't be like I'm copying him, but I don't want to feel like I'm competing with him either. Besides, I'm the mommy, I'll always be loved the most. Hahaha, I'm kidding.

Another surgery

So we spoke with the doctor last night and it looks like Claire might have another surgery on Thursday. This is to explore her intestines and figure out why they cannot feed her. While in there they are going to put in a trach and GI tube. I have been a ball of emotions the last few days. My mom is in town, set to leave tomorrow, but I think we are going to extend her trip through the weekend.

Sunday I held her. Things were going well, until the end. We had a nurse come in to suction her and the next thing I know she's turning blue, not breathing and limp. Turns out her airway either spasmed close, collapsed, or did a little of both. My heart stopped, it was the worst sight and feeling I have had since she was born. Then last night while talking to the doctor I was given another reality check. I knew she would need a trach for a while, coming home with one. I just didn't realize that she would most likely have it for 9-12 months. That means even if she is home, we won't be able to take her any where until the trach is out. I won't be able to enjoy my daughter as mother's with healthy babies do until next summer, maybe even fall. A part of my heart is breaking.

We had also discussed the idea of having in-home nursing assistance. It was a little startling to think of someone in our house for that reason, but I was also reassured for the help. The doctor last night informed us that most insurance companies do not cover in-home care. That's great! So instead of paying for in-home care, the insurance company is willing to pay ten times the amount to keep her in the hospital. I'm doing my best to keep a realistic time-frame of when she may come home, but I'm not sure of anything anymore.

This is making much more resentful of mothers who have healthy babies. I'm ready to shut myself into my small world and not let anyone else in. Maybe Adam is willing to deal with our friends, family, and the rest of society for me.

Claire's surgery last week to close her PDA went well. It seems to have helped her health. She looks better than she ever has. I realize that we still have a long way to go so my hopes of coming home early are not increasing. Our next step is to see whether we can ween her off of the ventilator or replace her tube with a trach. I would love to see her off the ventilator, but I have a feeling that won't happen. On Sunday the little stinker pulled her ET tube out; the nurses said she lasted all of 5 seconds without assistance. I can't wait to see the pictures they took while her tube was out. It will be the first time I get to see her full face.

She's been much more awake and alert lately. Now I'm starting to feel guilty because we've been told that she might be bored so we can bring in whatever we think might entertain her. Last night it broke my heart. She was wide awake when it was time for Adam and I to leave. I always feel like I'm abandoning her when I have to walk away and she's awake. I can't wait to see her again tonight!

My first blog

I'm nervous, I've never blogged before and I'm not sure I'm comfortable putting my life out there for others to read. On the other hand I think it will be good for me to get my feelings out, plus this will alleviate me from having to repeat my story over and over again.

Claire will be two months old tomorrow and I already feel like Adam and I have been pushed to our limits. We found out Claire had Congenital Diaphragmatic Hernia (CDH) when I was 22 wks pregnant. It was a shock and definitely unexpected. Tons of information was being thrown in our direction and all I remember hearing was that this could potentially be a fatal defect and that I was going to have an amniocentesis to test for downs syndrome. Luckily the tests cleared us for downs, but we still knew we had a long road ahead of us. Throughout the pregnancy Claire's tests were great, her development overall was on target despite the CDH. But don't be fooled, we were always aware that her health was a crap shoot until birth. We took all positive outlook and kind words in stride all the while doing our best to make them understand all the potential outcomes. Around my seventh month my health started to take a turn and the onstage of preeclampsia started. I was gaining 10-12 pounds a week and my body started swelling more than expected. My doctor appointments became more frequent and I became more uncomfortable.

On May 6th I was admitted into the hospital for an amnioreduction and placed on bed rest for the remainder of my pregnancy. For those of you who have never had one an amniocentesis is unpleasant, but it is a piece of cake compared to an amnioreduction. They removed 1-1/2 liters of fluid from me, and that only put me at the high end of normal. I only stayed in the hospital for a few days and spent the rest of my time at home. It was nice being home and resting, not to mention the extra loss weight and improved swelling was a bonus. Going to the bathroom no longer felt like an impossible task. By the time I was readmitted in the hospital to have Claire, my fluid and swelling was at an all-time high and my blood pressure was through the roof, but through it all Claire was happy as a clam inside of me, unaffected by it all.

June 4th I was sent back to the hospital. My preeclampsia had become too dangerous and the doctors wanted to induce me. Every four hours for the next forty hours a pill was placed inside me in hopes it cause me to dilate. I dubbed this lovely procedure the "two finger special." Two days later and still no dilation, my blood pressure was better and there was talk of sending me home. Thirty minutes later my placenta rips from my stomach wall and I start bleeding profusely. Needless to say, I was rushed for an emergency C-section. I was allowed to kiss Claire before she was whisked out of the room. I wouldn't see her again for another 3 hours, but little did I know she flat lined twice. When I was wheeled down in my bed to see her again it was explained that they weren't sure she would make it through the night. It was then I felt my worst nightmares coming alive. By blessing alone, Claire made it through the night and has gotten stronger every day since. It took about 10 days before the doctors felt comfortable fixing her CDH.