Lessons from Hannah: Part 1

Hannah is useful for many things. Most of them are fabulous. She can get a grumpy toddler to squeal with joy. She can make even the worst day better with one of her smiles. Watching her sleep may be one of the greatest pleasures ever. My arms are getting toned without doing formal exercises. (Okay, that one is just for me.) Other things are not bad, but I don't wake up and leap out of my bed for them. Diapers, diapers, and more diapers. The never ending parade of bottle washing. Wondering how she can spit up that much when I only put a small amount in. Some things are less than ideal. Stress. Bills. Worry. Fighting to get the meds in her that I know may help, but watching her gag makes me cringe. But even though we have just a few less ideal things that come with Hannah, she is perfect and I wouldn't trade her for anything. This journey we have been on has been quite an experience. But she has forced us to grow as a family and as a couple. She has taught me to be a nurturing mother and a fierce warrior all at the same time. She has taught us balance even in times of uncertainty. She has taught me a few other things too.

Lesson 1: Timing is everything. A good day for the Seger girls hangs in the balance each morning. Sleeping in and missing her first dose of meds is definitely not worth the havoc that the afternoon will bring. Never, ever miss the first dose.
Lesson 2: Don't trust anything without using your brain first. I realize that this is pretty common sense, but it is a very important lesson. I obviously needed to be reminded of it. Even if the monitor says that Hannah is desaturating, look, look, look at the baby first. Don't trust a doctor who doesn't even look at your baby. Trust the doctor who spends a half an hour on the phone with you at least twice a week, even if he doesn't have fancy credentials behind his name.
Lesson 3: Naked is good. There are few simpler joys than laying on the couch naked kicking your legs. Okay, maybe that is just Hannah's joy. But that brings us nicely to lesson number 4.
Lesson 4: KISS it baby. Yup. My high school English teacher, Ms. Small, would be proud I still use her principle-keep it simple silly. Yes, multitasking is a fabulous skill that many people, including me, find appealing and time saving. However, multitasking while dragging a pulse oximeter and an oxygen tube around is an invitation for disaster. A few people have told me that I have a super power. Relax, it runs in my family. Mine is lack of grace. I can trip over imaginary cracks in the floor, slip on a non-existent ice patch, or just fall while walking. So you can see how walking, with a cord, a tube, and baby while not focusing on the immediate need to stay upright could be dangerous for me. But what I have noticed is that while not keeping myself so ridiculously busy, I notice other things that I would have missed. Those things help me appreciate the simple joys that our world offers us. Sometimes we are too busy to see them. But sometimes we catch them. An elderly couple holding hands in the grocery store after fifty plus years of marriage. A smile from a kid who just got a cookie from the bakery lady. (Can you tell I was just at the grocery store? Hang with me here, I don't get out much.) Watching someone light up as they realize that someone noticed them and they do matter. Or someone else holding open a door for a solider and thanking them for their service. My goal is to see as many of them as possible and enjoy them to their fullest extent. Thank you my dearest Hannah. You have so much to teach us don't you?

Sherpa....

I think I must be a pretty pitiful sight when I am in town with both girls. People hold open doors for us. Strangers scramble to get us a cart or offer for us to cut in line. Others give us a really, really wide berth. Is it the fact that I have two under two that causes this general outburst from the public? I think it is more that other than the two babies I am hauling around, I also have a diaper bag and a huge oxygen tank with accompanying dangling, trip inviting tube that wiggles around my feet with each step. I added it up the other day and I haul over fifty pounds of baby and gear in and out of the car each time we stop. "No, that can't be right!" you exclaim and ponder why someone hasn't taken the children away from a woman who clearly can't add. "Oh no, I am good with numbers." I protest. Let me show you some fun momma math:
Car seat: 10 pounds (Hannah stays in her car seat, aka "The bubble" to keep her as far from real world germs as possible)
Hannah: 14 pounds 5 ounces (as of 1/14/11)
Emily: 19 pounds (she rarely walks these days in public-the house arrest has it's downfalls for her too)
Oxygen Tank: 8-10 pounds (depending on fill level)
Diaper Bag: 3-5 pounds (also depending on fill level!)
Grand Total: 54-58 pounds.
No wonder my back hurts at the end of the day. And yes, I guess watching a woman try to balance all of those pounds through a parking lot would cause people to pause, watch and then sometimes help. I used to tell people I had it all and I didn't need any help. I am invincible I would bellow (inside my head of course). I am woman-hear me roar! Again, just in the confines of my little blond head. But I'm tired and my back hurts. I now find myself welcoming the offer of help from strangers. Unless they smell funny. Or it is dark. Or if I don't have time to have the what is wrong with your baby chat. I have found the "Thanks, but my dog won't let you near the truck" line, delivered with a smile, works really well. It doesn't matter if I am not driving the truck. Or if my wonderful Bear dog is at home, probably sleeping on the sofa like a naughty dog. They don't know that. And it makes me giggle thinking of my naughty dog and my husband's truck, which leads me down a whole other road.

Dang you oxygen tank!

Hannah had a rough night last night. This cold is not going away easily. She has been fighting it for ten days. She started to get better and then took a turn back in the other direction. She's tired. I'm tired. Ben is tired. We take turns getting up in the middle of the night to do percussion on her chest. It is supposed to help her move all that "junk" out. All I can see it doing is teaching my baby, who just figured out to sleep through the night, to wake up in the middle of the night. I had great plans to rebel last night. I thought I'd let the poor kid get one good night sleep. And yes, I was being a little greedy and hoping for a good night sleep for myself too. Hannah woke up at midnight coughing. And at half past. And at one. At two I gave in. And at three, her alarms on the monitors started going off. She wasn't keeping her saturations up.  I got back out of bed. I checked all the lines. I checked her cannula. All fine. So dang. I had to believe the monitor at this point. I watched her for another ten minutes. She wasn't getting any better. So back out of bed again, this time to turn up her oxygen. Why, why, why, are her oxygen needs still going up? Isn't she supposed to be getting better at this point? Or at least stable? I am beginning to doubt her diagnosis now. I am getting an irrational hatred of the oxygen tank. Is it still irrational even if I admit it? I know the tank has nothing to do with our current problem. But if I could pick it up, so help me God, I would do some serious damage to that thing. Instead, I try to remind myself that the tank is the sole reason I am able to keep Hannah at home. And for that I am so grateful. So I am off to try another new recipe for mocha brownies. And I wonder why my pants no longer fit the way they used to. Sigh. I guess it is the lesser of two evils at this point.

Bath Time

I am having a dark day. There really isn't any true reason for it. Hannah's little friend Scarlett made it out of her second brain surgery and her tumor is gone. Hannah has found new interest in nursing and may actually get the hang of it. Emily is being an adorable and amazingly patient toddler. Today should be a great day. But I can't help but fight back tears. I think it comes from bath time.
Yes, bath time. Bath time is what strains my heart and teeters me on the brink of gloom and sadness. Why? Because about once every other week Hannah is healthy enough and stable enough to take off her oxygen while she bathes. I take off her tender grips and for even a few minutes, she looks like a normal, healthy baby. I snap pictures of my tubeless baby like a visitor at Disneyland. I gaze at her and see her full beauty, not hidden by the mask of her weak lungs. I see her as God made her, perfect. But then the hard part comes, getting her back into her "outfit". I have to put the stickers that she hates back on her cheeks. I have to hold her head down so that she can't faille to avoid them. She cries. I cry. We both cry together. I hook her back up to her oxygen and we have to face our reality again. Things aren't normal. They aren't going to be normal for a long time. Sometimes I look around and wonder what I did to push my path in this direction. Is it karma? Did God get distracted by some epic disaster when He was creating her tiny body? Did I run over a kitten in a past life?  And then Hannah lets out a joyful squeal as Emily runs around the corner to say hi to her little sister. I wouldn't trade that moment for anything. Suddenly, even though things aren't normal, they are perfect. And maybe today won't be so bad after all.

Why I Blog....

I know that even though things are hard right now, we've got it easy compared to many. A trip to Children's Hospital is a good reminder of that. Passing the huge PICU on the 3rd floor and hearing the beeping of the monitors slap me back into reality pretty fast. But then a little voice says as I enter those big glass doors, "If we don't have it so bad, then why is my baby here?".  This inner turmoil has made me into an emotional wreck, trying to hold it together for my girls. After all, what good am I if I just wallow and give up? This is my motivation to start this blog. I need a place to vent and stress and gripe without feeling like I need to be grateful it isn't worse. Yes, I am so thankful that Hannah can be at home and that she will eventually out grow this. But I need a place to mourn the loss of a normal, healthy baby. Wires, tubes and monitors that we drag around with us eventually takes its toll on normal.  And I am not implying that we don't have an amazing support network. My closest friends have become my family, stepping up and helping to hold my little family together. There is something so wonderful when people who were just casual acquaintances last year become people that you know you couldn't live without. I'm not to saying that our families haven't been amazing as well.  But there is only so much that friends and family can take. I feel like I can't be completely honest all the time without people worrying about me. I am fine. I am strong. I am a cowgirl and it will take much more than this to break me. But to stay that way I need a place that I can vent all of my dark feelings and deepest fears. That place is here. It isn't all butterflies and flowers. It is messy and real.  Consider yourself warned. Read on if you wish or hit the back button, I won't judge either way.

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Me vs. Pulmonology: The Epic Battle

A few weeks ago we went to Children's for our first visit to the Denver Campus. Well, our first visit to either campus. We saw the head of cardiology and we loved the whole experience. Minus the fact that she was sick enough to need to be there of course! We had a nurse that was assigned to us and she made everything so much easier. She met us at the check in desk, walked to the different tests with us, met us anywhere in the hospital anytime anything was going on with Hannah. What a positive experience the whole thing was. And then we went back to see the Pulmonology department.
Wow, what a different experience. From the intake desk, we felt much more like cattle being pushed through the chute than our red carpet treatment from the week before. The intake nurse was nice, efficient and cooed at Hannah. The doctor that came in first was kind and patient. She explained that she was working with the pulmonologist that would be in charge of Hannah. I liked her well enough. She seemed well past the point of exhaustion and looked like she had been on call for the past week. But she was able to smile at us. I know when I'm that tired, there is no smiling. So the fact that she smiled meant alot. Respiratory therapy came and took her pulse ox with and without oxygen. I remember the therapist saying that even though she wasn't clinically desaturating (she went from 98 to 91), the fact that her heartrate when up when we turned the oxygen off wasn't a great sign that she was handling the room air well. She told us to turn the oxygen back on and she would let her doctors know of her concern. Then the pulmonologist came in. He was very clinical. He listened to Hannah's lungs for less than a minute. He didn't make eye contact. Looked at me and said that without any clinical data he couldn't tell us what was wrong. I asked why she needed more oxygen each week. He got very short with me. Almost snippy. I hate how he made me feel. He made me feel like I was wasting his time and that I had no reason to bring my baby to him. He made me feel like I had made all of this up. He made me feel so small and insignificant. This is where things got better. Did I mention that I was able to bring my brother in law with me? The fancy, super fantastic ER doctor brother in law who isn't afraid of pushy doctors. He came to be our advocate and to translate things from doctor to plain English. I am so thankful that we had him there! He asked a similar question in doctor language. I saw the pulmonologist's ears turn red. Apparently we weren't and aren't ever going to be his favorite patients. He he he. Ah, the simple joys. Then my brother in law questioned the pulmonolgist's diagnosis. More than just his ears turned red. We have been referred to the sleep study lab so that he can get "real clinical data". Okay, fine. After talking with my brother in law, it is the most logical next step. (Even if the pulmonologist was an arse.) Downside-wait time is 4-6 weeks. Okay, so now this is a test in patience. Well, the pulmonologist wasn't exactly accurate on the wait time. Yes, 4-6 weeks, but 4-6 weeks until we got a call to be scheduled another 6 weeks out. But at least the people at the sleep lab seem nice. I guess only time will tell. For now, there are no clear winners in this battle. But instead of crying every time I think of that appointment, I chuckle now-thinking of the pulmonologist's ears. He he he. Maybe we did win after all.