You know you've got a sick kid when...

I started pondering this the other day and thought that it would be a fun way for me to return to my blog!
So, without further delay......

You know you have a sick kid when:

1. Not only do you know your kid's insurance member ID by heart, you also know the member appeal line number and the phone options to get to a mostly real person, before the prompt.

2. You know ALL of the receptionists names' and can recognize them by their voice.

3. When leaving a phone message, regardless of recipient, you spell your child's first and last name, birth date and a number where you can be reached.

4. You know the general schedule of the people at the pharmacy and know when to go to avoid the annoying clerk.

5. That deductible that seemed so high, was reached in the second month of the policy. And the yearly out of pocket max is reached four months into the "new" year.

6. And when you call Children's Hospital during the week, you can ask Moniqua how her weekend was.

7. You know the home health delivery schedule and that if the phone rings at 9 am on Tuesday, it's Apria calling to see what we need for our delivery the next day.

8. You have discovered that good things happen if you compliment the receptionist and the intake nurse on their nails, hair, etc


More to come soon.

The smallest victories

In the poem I posted a few weeks ago, it mentions not taking anything for granted. Adorable baby babbles. Rolly poly little baby thighs. And baby pants. Well, that last one is just for us.

Because Hannah has such bad reflux, she has been unable to wear pants since she was born. The pressure from the elastic waistband would put too much pressure on her little belly. causing her reflux to break through the medication. Within a short time, she would be fussy, grumpy and crying for no apparent reason. Except I knew why she would cry. And all it would take for her to settle down is a little momma snuggle and for her to ditch the pants. But today was a big day. She has successfully worn pants ALL day. (Envision a cascade of balloons falling from the ceiling while a band, appearing out of nowhere, starts to play a victory song.)

Ahhh, the little things that make the day wonderful.

Getting better

The healing process from our experiences with Hannah and her troubles is an interesting one. At first, it is overwhelming and you feel like the most worthless being on the planet. Then one day, things start to get better. And better. And better. Until you start to let your guard down. And that is when things get really messy. As I have worked through my feelings and emotions, I unintentionally put a little bit of that guard back up. Quickly stuffed the worst and scariest feelings into a cardboard box, shoving it high onto a closet shelf. I took my big marker and wrote "Do not open - ever" on the outside of the box. I thought that was all I had to do. Until this week, when that last little bit of the guard came crashing down.
I saw one of my online friend's pictures of her freshly baked newborn. No tubes. Fabulous skin to skin time. Nursing in bed without pumps and residual volumes. And all of a sudden, these terrible feelings came out of the box. Like someone had ripped off the tape and dumped the box upside down. I am not saying that I want her to experience what I have. Not in the least. I am ecstatic for every new mom that welcomes a baby into the world without drama or fear. (Other than the "what did I just get myself into" fear of course!) Many of my closest friends are pregnant right now. I pray every night that they have a fabulous pregnancies and healthy newborns. And I will be truly happy for each and every one of them when things go perfectly for them. But I have this terrible sorrow that when I see these pictures I just want to lay down and cry. It sucks out all of my energy and strength and deflates me like a week old birthday balloon after being drug around by a toddler. Great mental pic, huh? It reminds me of what I didn't experience with Hannah. More importantly, what I wasn't able to give her. Instead of me comforting her during her transition into her new world, she was sedated and laying under a heat lamp. Instead of skin to skin time while she learned to nurse, I hooked up to a pump eight times a day. I realize now how much I miss the "normal" newborn experience with her. I am so thankful that we have her here now. My brain won't let me even imagine how much worse this could be. I just struggle to chase out this feeling of misfortune. And I think fondly back at Emily's newborn days and how wonderful it was. I wish I could explain the inner turmoil. Moreover, I am surprised with these feelings. After feeling so much better for so long, I thought that this skeleton had been laid to rest. Apparently he was creeping in the shadows waiting for this moment.

I am so thankful for this blog. It has helped me heal in a way that was so unexpected. I started this blog because I needed to vent off all of this emotional upheaval before the top of my head blew off. And since my head is still intact, I'd say it has been a success. I am thankful for everyone that reads it. I hope that I am able to help someone by sharing my experiences with life, love and everything in between. In the next few weeks, I think I might start blogging about a wider range of topics, if that is okay with all of you. I would love to share more of what the board girls are up to and our adventures, instead of just stories of our past and recent crisis. Of course, I will still use my blog to prevent unintended head eruptions. And toddler tantrums in grocery stores. Okay, that last one was just wishful thinking! I love you.

Tomorrow...dum, dum, dum

Tomorrow night is Hannah's much awaited sleep study. Finally, after waiting six weeks just to schedule it. And then waiting another five weeks to get in. We have finally made it to the appointment that is making all of us hold our breath. Hoping, wishing and praying for answers. Trying not to dare to think, "Will we know why?". Oh, the hope. And trying to prepare ourselves for the very real possibility of another normal test. But there is one emotion that I wasn't really prepared for. Leaving Emily for a night.

This is Emily. She has a firm grasp of many of my heart strings.

These are Emily's curls that make my ovaries ache.

And here are the pig tails that remind me that even though she is in the full throws of toddler-dom, that my sweet, perfect baby is still in there. Somewhere.

 And this is what Emily does when I leave. Phase 1: The look

(Please ignore the dirty cheeks. Keeping this toddler clean is much harder than it looks!)

Phase 2:  The meltdown...

And then I feel like a schmuck. A schmuck that just stepped on a baby duck. Wow, that was graphic. Sorry about that. I have only been away from Emily overnight seven times. And out of those seven, five of them were in the hospital with Hannah. I am dreading the overwhelming guilt I will feel when I kiss those sweet toddler cheeks tomorrow night and leave. At least I'll have a board girl to keep me company. 



I don't know why, but...

I don't know why, but I emailed my blog "hero" this week. I felt kind of silly. Strike that, really silly. I tried not to just write about how much she inspired me. I made a valiant effort to try and explain why I felt that I needed to write her. I attempted to thank her for teaching me to cook as well as teaching me to blog. I tried not to sound like a preteen writing her favorite boy band singer. I don't know, maybe I wasn't successful. Maybe I sounded like a total freak and I am now on her list of banned emails. Who knows, now that she is so popular, she may not have even read the email herself. Some assistant probably screens them for her to prevent the inevitable boredom of hearing how fabulous she is. See, there it is again. Boy band crush. But hey, I have a lot to thank this woman for. She makes me laugh even when I don't feel like it. Her blog is always there for me, even when I am stuck on house arrest because pertussis is making the rounds in the Fort. I some how feel less lonely when I read her blog. Maybe it is because I can relate to what she writes about. Not true you say? How could I possibly have something in common other than a computer to another blogger? Well, she posts cute, adorable pictures of Spring calves next to pictures of peach pie. Or fabulous pictures of steak seared to perfection and then writes about how the basset hound ruined dinner. See why I like her blog? It is like my little inner monologue creeps out while I sleep and writes a blog. I have been secretly hiding on to hope that maybe she'll write me back. But after a week, I highly doubt it. Oh well, at least I got all of that off my chest and now I feel like I can continue on with my day. Happy trails my friends.
And since my posts are rarely complete without a picture....here is one of Miss Emily...who will soon be joining my blog topics.

A light at the end

It had been a whole week since Hannah's last desaturation. That week was blissful. She was doing so well that in the morning I debated about turning down her oxygen even further. I decided against it and I am so thankful I did. But this time aound it was so much harder. I don't know if it was because this one was worse clinically in some way or if in just a week's time I had gotten out of practice of dealing with my apnea kid.

 I would like to wander off topic for a moment and continue to express my unbridled hatred for her pulse oximeter. I keep waiting for someone to pop out of my closet and tell me that I've been on some form of a candid camera show. I stare at it for a few minutes. Perfect wave form. Great sats. I turn around - it beeps. I turn back around to face it. The alarm silences itself. I walk away and get to the doorway. It beeps again. Seriously? Where is the camera crew to apologize and show me my little footage from the show?! I digress, back to Hannah.
I was changing Hannah and noticed that she wasn't cooing or doing her normal adorable things I do when I change her. I took one look at her face and knew she was sliding down fast. Her lips turned blue and her tongue wasn't pink. (Insert any number of inappropriate words here. That way you will truly feel like you were in the moment with us.) I check her tubes and cannula while with my third hand (it only appears during times of crisis and panic) cranks up her oxygen to a full liter. I pick her up and start talking to her. Because, obviously she has full control over the situation and if I just ask her nicely she'll bring up her saturations for me. (I seriously wonder why anyone trusts me with kids in the first place.) Here is when I really want to throw this fancy monitor with all the bells and whistles out the window. I can't get a reading on her. Of course, this is the first question her doctor asks me-how low did she go? I resist the urge to yell, "I don't freaking know because the bloody machine wouldn't read". Instead I try to explain how an inanimate object wouldn't work even though I did the same thing I always have. Thankfully, her doctor understands how frustrating this monitor can be and doesn't call CPS. Hannah finally came around after a short time. I hate how time slows down when things like this happen. In reality, I know that her desaturation can be measured in seconds not minutes. But it feels like hours when it actually happens. Sigh. Wow, off topic again. Sorry about that. The hard part about this time is that it took her much longer to get really stable and happy again. She rode her full liter setting for a few hours. I was able to turn her back to a half a liter by bedtime and normal settings in the morning. But for awhile, she was barely maintaining at a liter. I have this terrible feeling that if we don't get into the sleep lab soon, we'll be doing an informal study at PVH as in inpatient.
I have been carrying around this one bad desaturation all of last week. I let it hang around like the odor my boots emit when I been working hogs. The way it wafts into the air even when it isn't pleasant or invited. Then the weekend came and we had some wonderful people come visit us. They have walked this road. They have worn the exact stinky boots that we are forced to wear now. They understand what turmoil we are in and what the constant stress and worry can do. And it was so reassuring. All I can come up with is that this past weekend was like a big, warm hug. (Corny I know, but it is the best I can do. I went to school to count cows afterall.) It energized us and gave us a new understanding of where we stand. And all of a sudden, I can see a light at the end of the road. It isn't big or bright. But baby, I see it and I am not letting go of it.  

How preemie Moms are chosen

To all the preemie moms out there, who struggle with the what ifs and the whys. I know a few people have tried to help me understand this. But for some reason, this little poem helps.

~~
How Preemie Moms Are Chosen ~Erma Bombeck

Did you ever wonder how the mothers of premature babies are chosen?
Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles.
"Give her a preemie." The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God.
"Could I give a premature baby a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy. This one is perfect.  She has just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air.
God smiles. "A mirror will suffice."
~~

Some how, after reading this, my less than perfect child seems seamlessly perfect!