Thursday, September 29, 2011

Days Like This



Ava consuming my Halloween Decor

Was almost driven crazy today. Yes, they have been little annoyances. But truly, sometimes it's the little things that drive you to the edge.
It didn't help I suppose that last night, I went back in my blog to look at some pictures of Ava and her hair line, and decide whether I'm giving her traction alopecia. (no.) This brought me back to last December, when her hair was all cutely professionally done (as in done by a friend) for our final court appearance. And then I read about Lily's birthday in October which is fast approaching, and about the NICU, and about hospice, and about her death. I had recently revisited this in my Hospital posts, but only from memory. Going back and seeing is different. Seeing her little feet, her tubes, her puckered lips waiting for chap stick. Seeing her all sweet and warm and still looking so weary. So I cried and cried, and then took Ella up to read before bed, and decided there's no reason I can't have Ella see me cry (it's okay to be sad or mad, after all) and I told Ella I was sad because I missed Lily, and that made me let forth a big ole' sloppy sob, and Ella just nodded and said "Well, she's a good baby."
I agreed and we read a Cinderella book (Ella's choice) and Little Bear, (my choice) and a weird bunny book about a baby bunny who doesn't want to be a doctor or a farmer or a lion tamer, he just wants to be a daddy rabbit with lots of children, to which I say then baby bunny better find a job.
Anyways, then we went to sleep.
Back to today. This is self indulgent but I'm going to go through my small annoyances just to make myself feel justified in being annoyed.
It started my phone claims I hit "dismiss" instead of "snooze" when my alarm went off, which means I missed my early morning all-by-myself read and work out session which I have enjoyed the past few days. When I did wake up I was glaring at my phone and it's alarm and noticed an overdraft notice from my bank, and found that Ella's preschool just barely cashed her tuition check I turned in six weeks ago. And yes, I should have known it hadn't been cashed but as I eluded to, I only started watching my finances like four weeks ago. So...totally annoyed. That of course means a fee. Grrrr and I have been so careful so that just drives me nuts.
Anyway, got up, briefly thought Ella might be well enough to go to school because she didn't weep and cough all night, but she woke up with a giant deep lung type hacking, so she missed it again. (That and the check just clearing....grrrrr, preschool.)
The morning went fine and I did get some exercise in, which doesn't work as well with kids sitting on your back when you try to do plank...or maybe that's better...but here's what happened from there:


  • Zar came home from work sick just in time to hear Ava slip and bonk her head on the wall after her bath. Much Screaming.

  • Ava, my child who does NOT like candy, found a cutely displayed jar of candy corn on a shelf, dumped it over her head and wildly stuffed them in her mouth while I tried to clean them up. Was funny until noticed orange drool all over carpet. Did I mention I was on my hands and knees scrubbing out carpet stains YESTERDAY...

  • Kids threw all my bathroom counter bottles in the slowly draining tub while I was stupidly trying to style my hair for the first time in a couple weeks.

  • Kids repeatedly slipped on wet bathroom floor (from splashing) and injured themselves while I repeatedly asked them beat it, curling iron in hand.

  • Kids feel neglected so start randomly screaming to point I am sure cops will be called. Also throw themselves on floor and hit heads again.

  • Hair looks awful.

  • Kids throw goldfish around room and grind into carpet while I dress.

  • Cat barfs on carpet. (carpet now huge mess of cat vomit, orange gold fish crumbs and massive amounts of candy corn drool, at least is festive.)

  • Ella goes out to garage to get into car while I put Ava's shoes on, and decides instead to crawl under car, where she gets her darling new cream colored dress all covered in black grime and oil.

  • Zar lays in bed and moans.

  • Meet sister, mom, and nieces at mall, eat chicken, my kids scream, her kids are angels. People stare.

  • Stupidly go to Sephora to get orange Halloween nail polish, thinking fun activity for me and kids, baby pedicures. STUPIDLY let Ella carry nail polish, ordering DO NOT DROP THIS which she of course immediately does, and it splatters all over the floor, shelves, and sister. Apologize profusely and stand them dumbly asking Ella to say sorry. Feel like jerk.

  • Rude construction worker gestures at me for who knows what, and I fight not to swerve into him on way home.

  • Glance into back seat and don't see Ella in her car seat, nearly have a heart attack, realize I forgot to buckle her in and she has quietly left her seat and is playing on the floor of the car. Feel awful.

If you have gotten this far, you will glad to know I now feel ashamed of my list, as now looks like a normal day and perhaps it was just my mood that was different. Probably due to last night's emotion fest. Anyway, both kids fell asleep on the way home and I carried them upstairs, dumped them in their cribs and got almost two hours to watch Ghost Hunters and work on my book page rosette wreath which I finally finished. And there is beef stew in the crock pot I made for my poor sick husband, who does not seem interested in leaving the bedroom. And Ella has not had an accident in days, including two full nights in big girl undies. And got compliment from black lady at mall on Ava's spiral curls. Sometimes it takes blogging to work out what's really going on. So...I had better just shut up and post.

Friday, September 23, 2011

Feeling Good

So the internet has been down at our home for the last few weeks, at first just partially so, and then completely, and no one really got around to calling on it until today. Thank goodness that someone was Zar as it took an hour and $40 to fix, which seems ridiculous, but the modem was out of warranty...or similar. But we're back up, with faster speeds, so hooray! Now maybe I will have the patience to upload more picture of my kids at the zoo. Yes.



Aside from the zoo, there are other things I've been up to. Here is a brief update.




Potty Training (warning, mentions potty stuff.): Success! Finally after months of fighting it and acting all squirrely, I told Ella that on Tuesday we are throwing away the diapers, and you are going to pee in the potty. She, shockingly, agreed. We talked about it all week and told all our friends who oohed and ahhed. Then we did it. Woke up, got naked (her), sang a song and dumped the diapers in a (clean) garbage bag. She did so great. We stayed inside and she peed and yes....pooped...in the potty all day long. It was awesome. That was last Tuesday and she is now going to preschool and Target and Costco in big girl pants and doing fabulous. We've had a few accidents obviously, a bad one with her poor sitter, but really it's been awesome. I look forward to doing a better, faster, less prolonged training with Ava. And the checkout girl at Target laughed heartily when Ella informed her that she worked at "The Panny Store."


Organization: I've decided, now not having the stress and emotional struggle of a special needs child, that I can no longer spend money like a drunken sailor. This is something I should have figured out years ago, but honestly, with everything else going on, it was just one thing I couldn't bear to think about. We were covering our medical bills, and I was happy. Even if that meant treating ourselves...okay...myself, and my kids, to little luxuries that perhaps were out of our non-existent budget. So now, having decided to look for ways to save money and pay attention to my I's and O's, turns out I need to come up with other stuff to do other than wander the mall or Target, aka, The Panny Store. This has, actually, been awesome. I have rearranged my kitchen and finally threw away the stale and spilled weight watchers cereal in my cupboard, moved the pots and pans around and used our billions of old medical tubs to organize our pantry. These tubs will be familiar to anyone with kids who frequent the hospital, but we had even more than normal due to the pumping and storing I did for Lily during her NICU stay. See tubs. Couldn't bear to cover her sweet little name on the "Snax" tub. Sigh.


I also, having discovered and explored Pinterest.com (GO NOW) have learned to make laundry detergent from bars of Fels Naptha (smells almost as good as Pine Sol, drove around with a bar in my car for awhile) washing soda and borax. This has been fun and economical, along with my reusable dryer sheets cut from old flannel burp rags and a fabric softener concoction. Too...fun. I feel like a full on pioneer. With an Ipad. And pinterest. In the interest of full disclosure I get a huge kick out of scooping my little teaspoons of powder into my laundry, but I still take no joy from folding it.


More Pinterest Exploration and resulting crafts: I did a lot of pinning before our internet went down, and therefore had lots of ideas for stuff to do while I wasn't shopping and/or waiting for potty success. Here are my copy-cat Halloween decorations I stole, which have been up for...way too long already. Thank you Cricut, dead sticks, and black spray paint. Oh yes, and the dollar store, another recent discovery. Their pasta is mushy but everything else, eye opening.

Thinking About Deadly Epidemics: Yes...we have been hearing about the importance of food storage and disaster preparedness for many years...there have been entire conference weekends pretty much dedicated to it...but it took a movie about a super bat/pig virus to get my butt in gear. I guess I always assumed if there were some sort of earthquake any food I had managed to store would be buried in the basement, or I could still run up to the the Smiths and loot with the rest of them, or focus on getting to Shannon's house were the giant Shelf Reliance system is...but my goodness, what if it were a VIRUS TYPE DISASTER??? (such as in the recent movie release, Contagion)Those people were waiting in emergency food lines like 20 DAYS IN. With masks and guns. I mean C'MON. I'm happy to report I worked a couple of these beauties into the budget, so I can relax a bit, and am now focusing on the more economical beans and wheat type storage. Slowly. Oh, and I made my own tiny pantry organization thing out of an empty muscle milk box. (pinterest). For black beans. Cuz I have like NINE CANS. So...yeah, all is safely gathered in, if you know what I mean.
Feels good to be potty trained (both Ella and I), organized, somewhat in control of my spending, overly decorated, and blogging again.






















Tuesday, September 13, 2011

What we've been up to:

first and foremost... Staying cool...

hangin' at the zoo...
relaxing up the canyon...


First day of preschool!

BAAAA
Loving the State Fair
Enjoying early Fall to the fullest.










































Sunday, September 11, 2011

10 years

Before I was a blogger, I was a journal keeper. Thankfully, quite a dedicated one actually. Tonight I pulled out a big white Deseret book journal with a stick figure dancing to the caption "livin' la Vida loca" and the phrase "Midwives Help People Out" written inside the front cover. This book covers my life from January 1st 2000 to my wedding day, September 27, 2002. Quite a crazy, turbulent, painful and wonderful time in my life. I wanted to see what I had written on
9/11, and was pleased I had the wherewithal to take the time to write something. Although it was just the facts. At the time I had been writing mostly in a grungy yellow notebook with "Erin's House of Pain" etched on the cover. Very unfortunately, this notebook is lost to the ages, because believe it or not, it covers THE most life changing months of my life, the months in which I truly grew up, in all it's raw and painful but necessary details. But that is neither here nor there. The point is, the most personal thing I wrote on 9/11 is that I went to my Institute class,
("You were in COLLEGE??!" my then 8th grade brother squawked tonight when I mentioned this fact) and then left, because it felt inappropriate to go to Latin Dancing which was next on my schedule.
In the weeks surrounding 9/11, I had my heart broken, like really, really broken, went to therapy, wore a ring I wish I still had that said "WHOLE" to remind me I was enough on my own, got into nursing school, turned 21, moved out into my first apartment, and met my husband (and consequently wrote some major cheesy poetry).
I was so self involved that I know for a fact I didn't even cry that day. I remember thinking I should be crying, that would be the appropriate response for a young lady, but it didn't happen. I since have cried when watching old clips, movies and during embarrassing country songs in my car, but at the time it fit so neatly into the theme of my life that it hardly shocked me. I had built up walls to protect myself in the proceeding days and the sounds of terror and sorrow were muffled and far away. It was a time of tragedy out of the blue and loss and growth. It was a time of tears and pulling together and change. Of anger. Of being more careful. Of new priorities. Of innocence lost.
Tonight watching the tribute shows, I couldn't believe ten years have passed. I cried this time, and thought of my family, my kids, and how much differently I would react today than that 20 year old girl who wasn't a bit surprised the world was ending. The gravity, finally, has sunk in.


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Sunday, September 04, 2011

Hospitals. The conclusion. Finally.

We had high hopes when Lily was born. I did, at least. Her heart looked fairly healthy on echo, her skull was pleasingly round on ultrasound, and she was big. And so, having accepted that we were getting a new membership to the special needs club, I was hoping for a chance to be amazing at it. I was counting on Lily to make it easy for me. No big surgeries, no scary unknown, and hope of hopes, no oxygen.
When Lily was whisked to the NICU at age 20 minutes, I felt those plans slipping away. Still, she graduated quickly from the little room at the hospital where she was born and was soon a big fixture in the feeder grower area, sunning under her bili-lights and taking milk by bottle. I thought she would be home soon after I was discharged. Leaving the hospital without her was so sad and felt so wrong that I have blocked it out. But I remember going back when they called in the night to say she had aspirated and would be taking no more milk by mouth. Back in the small NICU room, in the back with the sickest babies, I just wanted her transferred to the big hospital, where they would fix everything. Where they would declare that comparatively she was so healthy-so big! - and we could go home.
Lily transferred. She went to the NICU, and soon I was wondering why I thought this would simplify things. They looked closer. They saw how fragile she was, even comparatively. The NICU doctor talked to me, and said her death was a matter of now, or later. I nodded and thought "Well, isn't yours too?"
When Lily did come home, with a g-tube and oxygen and a terrible diaper rash, I thought we had made it. I thought finally our journey could begin. I could work hard with her on positioning, and tummy time, and physiotherapy, and all those things I should have worked harder on with Charlotte. Yet before I knew it I was calling across the driveway to the approaching therapist that Lily had stopped breathing and we were going to the hospital. And bringing her pulse ox downstairs to keep on her at all times because she was so sensitive to position changes. We kept taking her back to the ER, to the PICU, where she would lay quietly for a few days in one of those cage-like cribs, hooked up to even more tubes than usual and then come back home with no new miracle. I knew she was having seizures and when we finally caught one on EKG during a respiratory related PICU stay, I pulled out ice cream cups to celebrate. Now we could fix her. Now the real journey would start.
The meds seemed to work briefly. We saw the neurologist who mostly just shook his head. I stopped taking her up to the ER and instead made frequent trips to the doctor's office to get her suctioned. It took forever and I had a two year old, a six month old, and Lily with me. But at least we were together. Finally, during one of those doctor visits I mentioned hospice, then burst into tears. It felt like giving up.
But if it was giving up, it was what Lily needed. I stopped worrying so much about the journey and focused on Right Now. I gave her long coconut oil baths and massages. We played music. We let hospice bring us her meds and a suction machine. When her alarms went off in the night and she turned blue, fear would grip my throat and I would start thinking of how much to pack for the hospital. But instead, we would hold her, and pray, and eventually go back to sleep. It wasn't easy, and sometimes it still felt like giving up on her. But it wasn't.
Eventually I stopped hooking her up to her monitor except at night. Suddenly she looked pinker and my stress level dropped. The seizures, however worsened, and each one seemed like it was the end. We had hospice support, and family support, and dinners brought to our door.
I brought Lily to bed with us. I kept a hand on her all night long. I smelled her head constantly and took pictures of her big feet.
One Sunday morning just as we were waking up, it seemed like Lily was ready. Her oxygen went down down down. She was sleeping. We were crying. I began to panic, it seemed scary and wrong to do this without the hospital support. I wanted staff, and curtains pulled, and someone in scrubs with authority to tell us what to do. But the feeling passed, and I tried to be brave, even without a doctor there.
We all sat on the bed, even the babies. We were in pajamas. We were next to the window. It was sunny, and quiet. We sang to her, Consider the Lilies. And Lily, slowly, left one home for another.
Hospitals may be for healing, but when it came time for Lily to be fully healed, we had all we needed at home.
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