Wednesday, December 31, 2008


Had to post this pic of Kennedy kissing Charlotte Halloween 2007.


I dreamt last night that my goal was to have another baby by Christmas 2009. That is not my goal. Concerning children, my goal is to lose 10 pounds, save a lot of money, and have pre-diagnostic in-vitro fertilization done sometime in 2010. Probably male embryos only, so Zar can have a son.
The keyword of 2008 was Pregnancy. As I've mentioned before, there were a LOT of pregnancies around me in 2008, including, of course, my own. Mine was not planned. Zar and I have a fifty percent chance each time we conceive of making a baby with serious health problems. However, according to medical science, those unhealthy embryos should not survive to become fetuses. But then Charlotte did. Charlotte has survived to become a baby, and then a toddler. So from what we can tell, our chance of carrying and giving birth to another child with chromosomal issues is between 12 and 25%.
In February 2008 I found out I was pregnant. I remember looking at those little pink lines and feeling calm and slightly annoyed. I was thinner than I'd ever been before in my adult life. I was really into designer jeans. (sevens.)
My first thought was not "Oh my goodness what have I done?" I did not sense months of fear and sorrow ahead of me, which was strange as fear and sorrow ruled my first pregnancy. Of course the thought that this baby might not be healthy crossed my mind, but from the get-go I was quite sure that all was well. With Charlotte I always felt that things were not right, but that it would be okay.
My biggest fear, in fact, was what others would think of me. How irresponsible, to get pregnant again. How foolish and stupid. I know this because I've thought these things about families who choose to trust in God and get pregnant again despite bad odds. I also knew my mother would have a rough time dealing with the unknown, so I decided to have prenatal testing done and not tell my parents about the pregnancy until we had the results.
However, the doctor wouldn't do the CVS until 12 weeks, and by that time I had overindulged myself up 15 lbs and felt I needed to provide an explanation. We told my parents by putting Charlotte in a t-shirt that read "Big Sister 2008". My whole family screamed so loud that Charlotte passed out. My mom even said "It feels different this time, I have a good feeling about this."
That doesn't mean she didn't want to know for sure. In early April I had my CVS. A couple days later the doctor called to inform me that the test had failed, the sample was insufficient. He offered to repeat it free of charge, but I refused. The test carries a small risk, was uncomfortable and exhausting, and the results wouldn't have changed anything.
My parents did not handle the news well. They demanded I repeat the test. They mentioned abortion. My mom said "Have you really thought this through?" I hung up on her. I was in San Francisco and although she kept calling, I didn't answer for 18 hours just to punish her.
When I finally consented to speak to her, I told her I would not tolerate any more negative talk. I told her the hardest part of my first pregnancy was having my dad refer to the baby as "it" and ask "are you going to feed it if it lives?" the night before she was born. I told her to lay off and stop poisoning this experience for me. She apologized and said she still felt everything was fine.
But the next time I was at her house, I overheard her talking on the phone. She said that everyone thought I was crazy and naive. She said I already looked soooo pregnant and there would be no hiding it if something went wrong. She said she was worried and afraid. This was not what she had assured me. I began to think the hardest part of this would not be watching another sick baby be born, and possibly die, but admitting to everyone that I had been wrong, my faith had been misplaced and I had been stupid to let this happen again.
And yet, I couldn't deny that somehow I felt like this baby was healthy. I was furious at my mom for doubting me. I avoided my parents for the next few weeks as much as I could.
One Saturday morning before work, I went to the clinic had had my blood drawn for the quad screen, which with Charlotte had been our first solid indication that things were not fine. I didn't tell anyone I was having it drawn, not even my husband. I remembered the day three years ago when my doctor called me at work to tell me my baby had a 1 in 84 chance of having a trisomy, and how I had sobbed in the back room the rest of the day.
On Monday morning, I checked the results. I knew they were supposed to take a few days and my heart nearly stopped when I saw the word "Complete." I held my breath and clicked.
Normal.
I called my mom and told her my test showed this baby had a 1 in 3200 chance of having a trisomy. I practically crowed I told you so. When I told Zar he wasn't surprised. "Oh that's great!" he said. "I thought you weren't having that drawn?"

I want more children. I do not necessarily want more pregnancies. I am certainly open to adoption, or IVF. Or, we could risk it and just go off the pill. Even with my last experience, I am not open to that. This time was easy because the pregnancy was a surprise and I had resolved long ago to leave it in God's hands. So why can't I have the faith and trust to just let the chromosomes fall where they may? I believe God helps those who help themselves. I don't believe in too many unnecessary risks. In the end, it's all in God's hands, but I see no problem in stacking the deck in my favor. Charlotte is the greatest blessing I have ever received. I thank God for her every day. And I thank God that He saw fit to bless me with another little girl whose greatest trial thus far has been dandruff.

Sunday, December 28, 2008



Zar and I spent all of 2008 and most of 2007 as nursery leaders in our ward. At first it seemed fun and easy--hang out together and with Charlotte and teach lessons such as "I am Thankful for Fish." Also the snack time was a bonus, even if it was just marshmallows and pretzels.
After a few months, though, I really started to miss Real Church. Nursery could be exhausting--I liked most of the kids, one or two in particular, but I was tired of trying to play on hard cold floor in a dress. Plus there was the screaming, the pooping, the boogers, the fact that everyone without small children thought we were inactive. I started to feel like I was inactive as well. I kind of started to act like it.
Then winter came, and Charlotte caught a cold. For most kids, no big deal, but for Charlotte it can be life threatening. We suspected she had caught it from nursery--the boogers and coughing had been extreme that week. Charlotte's doctor recommended we get out of nursery ASAP. In December 2007 we explained this to our Bishop who said he would work on it.
A few weeks later they released...the other nursery worker.
Now I was feeling bitter. I'm sure there were plenty of lessons to be learned that I missed, but I was furious. I felt like my daughter's life was in danger and no one cared. I started taking her to Relief Society with me and leaving Zar in nursery. He was very dedicated and long suffering. I was just mad.
When the spring came, Charlotte went back to nursery and did fine. By this time I was pregnant and playing on the floor was out of the question, but I wasn't trying anyway. The kids I really liked were gone, the new ones were just babies and I spent nursery with Charlotte making sure no one sneezed on her and she didn't touch any filthy toys.
Finding substitutes for nursery when we were going out of town was virtually impossible. No one was keen on being ward babysitter, even for a week. I hate to say it, but I hadn't felt so far away from the church ever before in my life. I was still bitter, angry and losing faith.
One September Sunday I had a complete break down. Zar had been in Michigan for a few days that week and I had been home alone with Charlotte who was very sick. I had changed 7 diapers, outfits, and blankets the night before. There was a little boy making an ungodly wailing noise which scared Charlotte and she started to scream. I was 36 weeks pregnant. I started to shake and sob. Zar had to take me home.
I stopped going to nursery. A few weeks later I had a brand new baby so I stayed home. The day I went back I sent Charlotte to nursery with Zar, and I took Ella with me.
Charlotte got sick. She was sick for weeks. I don't know if she caught it in nursery, but she caught it somewhere. Just when she seemed to be getting better, she stopped breathing on the school bus. We ended up in the hospital.
Last week we saw our Bishop. "Charlotte doesn't have the same immune system as other kids. She can't be in nursery. We need to be out of nursery."
"We'll work on it." said the Bishop.
This week I took Charlotte with me and Zar took Ella to nursery. When I poked my head in after relief society, Zar told me we were being released today. Or rather, he was being released. I released myself months ago.
I am thrilled to start a new year Not In Nursery. I know it's my fault, that I didn't magnify my calling, but being in nursery for two years really, really hurt me spiritually. I don't understand why we had to be in there so long. I guess the only positive thing I can say is I didn't leave the church over it. I have another chance, another year. I feel much better about church already, and I feel like I'm on my way back. I hope my next calling, and my actions, bring me closer to God, instead of just anger and bitterness. I also hope it doesn't endanger anyone's life. Guess I'm funny like that.

Thursday, December 25, 2008






Merry Christmas!

Tuesday, December 23, 2008


It's Christmas Eve Eve so I thought I'd write about...Valentines Day.

For our first Valentines Day as a married couple, Zar took me out to eat downtown. We couldn't get reservations until 9pm, which is pretty much my bed time, and we didn't get our food until nearly ten, and not even I want to eat lobster at 10 pm.

The following year we decided to stay home and we spent the whole day together. We searched all the cookbooks we got for our wedding and put together an awesome menu, then went to the grocery store and got all the ingredients. We made crab cakes and lamb chops and crab legs because they were on sale. It was a strange combination but a lot of fun and everything was delicious.

The next year we tried to make a roast chicken from a recipe in a magazine. The whole condo was filled with smoke and we were very depressed as we had just found out the baby I was carrying would likely not survive. That's all I remember.

In 2006 I can't remember what we made, but I remember Zar left to go get flat leaf parsley, and while he was gone I sliced my finger open, screamed, and waved it around wildly, spraying blood all over the kitchen. I was still finding dried drops of it months later when we moved. Anyway, I sat waiting for Zar to come home as I was certain I needed stitches. Did I mention I was wearing a little fur trimmed red nightie with hearts on it that barely covered my post pregnancy bum? I was. Then a car pulled into our parking spot right outside our bay window, and I jumped up and stood there in all my glory in the headlights. Then I realized it was my in-laws, come to give Charlotte a Valentine. They sat in their car, unsure what to make of my welcome, and I crawled into the bedroom and put on a robe. They chose to leave the gift on the porch and run for it. Zar came home and only my pride needed stitches.

In 2o07 we were in our new home, Zar worked late, and my in-laws came over. They rang the bell and then hid in case I answered the door in a bunny outfit. Once I proved appropriate they appeared and gave me a pair of ruby earrings. It was the highlight of the day. I know that because I don't remember anything else. For all I know Zar never got home.

This year I found out I was pregnant on February 13. The next day I treated myself to a bizarre spa treatment--I basically lay on a table in a steamy room while a woman bathed me. One might suppose I could bathe myself, which is why I doubt I will ever pay for that particular treatment again. I don't remember a thing about dinner, or gifts, or being naked in front of my in-laws. Just the spa girl.

I am thinking about Valentine's Day because today I decided to make the balsamic lamb chops we made for our 2nd year. By the time Zar got home 30 minutes late the kitchen was full of strange smells and burnt oil. He ate the chops, the water logged wild rice and a few green beans, and a huge pile of potato chips. I forgot to pull out the Martinelli's Cider I was chilling, and when I finally did Zar looked at me with horror and asked if I am pregnant. I told him if I were pregnant I would be sobbing and tearing my hair out, not offering him lamb and cider.
Which brings this entry to an end. Merry Christmas Eve Eve, and Happy Valentines Day!

Friday, December 19, 2008


Thinking about birthing lately, as everyone has been doing it.
Owen, Jack, Hayes, Ella, Megan, Ethan, Caroline and Paige, I welcome you all.
All came with fascinating birth stories, which I have always been interested in, so much that I had plans to become a midwife after high school. A semester in labor and delivery nursing changed that.
The ideal is beautiful, and I wanted it so, so much. With Charlotte the goal was for her to breath, just once, and her heart was not tolerating labor well, so a Cesarean section after 18 hours of induced labor was the right choice. But with Ella, I did not want another surgical birth.
I read the books, I got my docs support, I listened to Hypnobirthing on my Ipod. I meditated and prayed and rolled around on a giant ball. I pictured myself waking up in labor, staying at home as long as possible, snacking, resting, standing in the shower, breathing. I practiced breathing a lot. I bawled through multiple episodes of "A Baby Story."I drank raspberry leaf tea and took Evening Primrose Oil. I really tried to BELIEVE in my body.
If there is one thing I know, it's that nature sometimes needs help. Yeah, the body is designed to work perfectly, it is designed to use oxygen, to walk, to birth. But it doesn't always live up to that design. Some people, like Charlotte, use supplemental oxygen their entire lives just to survive. Some people, again, like Charlotte, will never walk. Some people, like me, need surgery to safely deliver a baby.
In the end I packed, I went to Olive Garden, I slept well all night, my husband drove me to the hospital at 6 am and I delivered Ella, 8 lbs, 4 oz, via c-section at 8 am.
Oh well. So I didn't get my glossy ideal birthing story. I did get a beautiful baby girl and a new neat and tidy scar.
I also got something very c-section moms ever get--pictures of the birth in all it's bloody, fascinating, surgical glory. I didn't know my dad was taking these pictures, but it's just one of the benefits of having an anesthesiologist father. I think the pictures are incredible, but I will spare you a description. I will say that I am happy to share these pictures with friends, and have done so with many of my girlfriends. Shockingly, not one husband, NOT EVEN MY OWN, have wanted to see them. It's all perfectly decent. It's just a hole in a tummy. I don't see what the issue is, and it's what I have instead of the wonderful water-breaking-at-Walmart story. Which goes to show you, in the end we all get something special to share, even if it isn't what we begged, prepared, and prayed for!

Thursday, December 18, 2008


I have two daughters, Charlotte Grace and Eleanor Julie. When I was in high school I felt I would be different--pretty and thin and confident--if my name were Lydia or Alicia instead of Erin. Erin is short and dull and boring, which is how I often felt. It isn't even decidedly feminine. I wanted to be grand and sexy and gorgeous. Danielle! Victoria!

I named my second daughter Eleanor. While I was pregnant, I mentioned this name to very few, preferring to tell them her name was Ella. More than once people violently attacked the name Eleanor, comparing it to Agnes, Beulah, Gertrude. And yet, my little girl is Eleanor Julie Hayes.

Let me defend myself. I feel the name Eleanor is lovely, feminine, classic, strong. Maybe a tiny bit dowdy is all. I think Charlotte is one of the most beautiful names in the world, but she is called "Chuckie" by her aunts. Chuckie is worse than Gertrude, for sure. But I named Eleanor so, for the nickname, Ella.

Ella is clearly feminine, clearly confident and smart. She is the 15 year old I used to pick up from school who was all these things, as well as happy and clever and cute. She wasn't weight obsessed and she didn't waste her time crying over dumb boys. She was athletic and joked with her parents. She was kind. She ate burgers. She ran.

Eleanor Julie can choose who she is, and she can change her name accordingly. She may always be my Ella-Bell, but she may chose to be no-nonsense Eleanor, or sweet Ellie, or tomboy Els, or sexy Elle. She may be complicated Nora, independent Leah, old fashioned Nellie or Nell. She may scrap the whole thing and be Julie, after her Grandma. So when I named my daughter Eleanor, I had her well-being in mind. I want her to choose for herself who she is, and not use her name as an excuse to be anything. Or not be.

And yet, when Grandma calls her Eleanor, I stop her. Her name is ELLA, I say. ELLA.

Thursday, December 11, 2008

What Sucks About the Hospital
  • Having a sick kid.
  • Pumping milk for your absent baby and having docs walk in without knocking.
  • But then, I don't care if they forget to knock, as long as they SHOW UP.
  • Missing "Dr. Phil" because you are waiting for an aide to come pick you up from Imaging.
  • Gaining a pound a day on food that doesn't even taste good.
  • Having your kid get C. difficile, which results in buckets of mustard like poo.
  • Feeling like maybe, for the first time ever, you may be getting it too.
  • Never seeing your 8 week old baby, or your husband, or unfiltered daylight, or shampoo.
  • Waiting for doctors, waiting for tests, waiting for bad news, waiting to leave.
  • The strange lethargy and exhaustion that sets in, although you are just sitting there. All day.
  • Having a sick kid.
What Isn't So Awful

  • When your kid is still laughing through it all.
  • The truffles in the cafeteria. And Chicken Noodle Day. Okay, some things taste good.
  • When the doctors don't have such awful news.
  • Oprah. Everyday, without guilt.
  • Visitors that bring sushi, gummi bears, Excedrin, or just themselves.
  • Feeling justified in not getting that Christmas shopping done.
  • Nurses who remember the stuff you ask for.
  • Time to read to, play with, and snuggle your kid, without thinking of the laundry.
  • Fun surprises: Dog Therapy, a stuffed duck, the book cart, the donut and milk cart.
  • Dr. Day, our cardiologist who called me directly and visited too. And didn't rush.
  • No IV this time, catheter, intubation or near death experiences.
  • Knowing that your kid is in sinus rhythm, her sats are good, and she's not having seizures.
  • Going back home again.

Wednesday, December 10, 2008


I've been sleeping like a rock. Zar stays at the hospital with Boo, and I, a nursing mother, get to go home and lay in my huge, quiet, empty bed and sleep all night long, or from 11 to 6:30, when Ella gets up and we go back to the hospital. There is no snoring from Zar or Boo. (The night nurses enjoy that from the comfort of their station, right outside our room.) There is no clicking feeding pump, humming humidifier, or alarming monitor. No toddler nightmares and resulting shrieks. There is simply dark, heavenly, peace.

This is the reason I can handle the days here, trying to push my opinion on the doctors without being insulting, watching my little girl being held down, screaming, for various tests.
We were supposed to go home yesterday, told to keep Charlotte on her oxygen monitor whenever possible, told it was probably a "brain blip" and there was nothing to be done.
"what about reflux induced apnea?"
"It's not reflux." says Dr. Cline, "She has a nissen and is on prevacid."
"But what if?"
"Well call Meyers then."
So I do, and Meyers wants one more test before we go home.

Major, immediate, life threatening REFLUX.

Charlotte needs surgery. Last time she had surgery, March, 2007, she barely pulled through.
So here we are. Do we do the surgery, which she may not survive, or do we do nothing, knowing any moment she could turn blue and die, any moment she could come down with aspiration pneumonia, and even if she doesn't, the reflux is eroding her insides and making her heart condition worse?
I am thinking surgery.
During the night Charlotte spikes a fever and requires a couple sheet changes.
No surgery any time soon! No going home either, except for those short, sweet, heavenly nights.


PS. In case you are wondering...
Charlotte had a surgery to tighten the top of her stomach--a Nissen Procedure. It is supposed to hold the stomach closed when it is full, like a drawstring bag. It has loosened so that she is again refluxing acid and stomach contents into her esophagus. Charlotte is good at "protecting her airway" so when this happens, her throat spasms closed, which keeps the reflux from entering her lungs and giving her pneumonia. However, with her throat closed, she cannot breath. When she tries to push air out of her lungs she "vagals out" meaning she puts pressure on her vagus nerve and passes out. This occurred on the school bus on November 20th, in the car on the 5th, and again Sunday morning the 7th, when we finally decided to come to the hospital and ask to be admitted. She now requires a repeat Nissen to tighten the wrap on her stomach. However she also had contracted C. diff which will probably postpone any surgery for weeks, and keep us in the hospital as well.

Monday, December 08, 2008


Ponytailed and Pajamaed-I find my family back in the hospital after an amazing run--it's been 21 months since we were last an in-patient family, if you don't count that overnighter in July, which I don't.
Made easier this time by the fact I am on maternity leave and don't call work each morning with feeble promises to try and make it when I can.
Made more difficult by 8 week old Ella, who thankfully, behaves like an angel.
Charlotte, dressed in last years Christmas dress that still fits, (just a wee bit short) sitting on the bed waiting to go to church Sunday morning, suddenly goes blank and tips over like a chess piece.
Something is definitely going on, there is no denying it now. It's not just a cold and congestion, resulting in poor oxygenation. There is something major going on.
Charlotte is admitted, and I decline to sign the DNR.
Charlotte is on telemetry; someone is watching her heart rhythm 24 hours a day, and thus far, no "remarkable events" have occurred. She also undergoes an EEG, sleeping quietly while a couple dozen probes on her skull measure her brain waves. No seizure activity either.
She is happy and enjoys the constant presence of either mom or dad, eats multiple servings of vanilla pudding, explores the light-up musical seahorse Grandma brings her.
So all good news? Most likely we will go home unsure of what has caused these episodes, three in as many weeks. To rule out major cardiac and neuro events is a comforting, but the unknown is still terrifying. They could be a fluke, disappear never to return, but I'm afraid I'll spend the next few months on edge, constantly checking for dusky lips and blank eyes. But at least now I have hope of having those months, when for the past three days I've been saying goodbye.

Saturday, December 06, 2008

I just want everyone to know that I use this blog to decompress and deal with stuff that happens to me. It's sometimes quite dramatic and maybe difficult to read about living with a seriously ill child, but it really really helps me to write about it.

Please know that we are fine, that we we have been dealing with stuff like this for more than three years, that we aren't traumatized or falling apart. Scary experiences come with parenthood, especially special needs parenthood, but it's worth the time we get with our daughter. So please don't worry about me or Charlotte. 95% of the time she is the happiest girl on earth. Her life is fragile, but all life is.
Another Close Call


Do you know this sound?
When I heard it, I reacted instantly, even though it was a relatively normal toddler sound, kind of a snort, kind of a snore. My nursing education came rushing back and I thought "agonal breathing." I was taught to not use the term "death rattle." Its offensive to the family.
Seconds later I was half in the backseat, my face pressed against my daughter's, breathing for her, saying things like "not good" and "purple" in between breaths. My husband freaking out in the front seat, stopped at a traffic light, on the way home from his birthday dinner shouts "IS SHE BREATHING!?"
I breath, and wait.
"No."
She doesn't breath on her own for long, dark seconds, my hand on her chest, feeling her heart slow but steady, giving her little puffs of my own air. Why do I get so calm? Zar is panicking at another traffic light, I say "relax Zar." And I breath.
We go home. We have friends following us, peeling into the driveway behind us, seeing me holding her to my body, my feet still in the front seat.
Inside she wails. Here we have nearly unlimited oxygen, a mask, a flat surface. She cries and breaths, but she isn't there.
We don't go to the hospital--we were just there and they can't help.
Finally I say "If she's going to go, I'd rather it be here."

Have you said that about your child?

We stay home. She falls into a rhythm; two shrieks and then what appears to be a small seizure, then normal crying, slowing, calming down, then the shrieks and she stiffens again.

I am ready. I have been expecting this. I tell her to go home. We love you so much, but if it's time to go home, go home. Zar cries and holds her.

Charlotte stays.

Two hours later she falls into a deep sleep. We don't know whether she will be herself when she wakes up, or if she will.

She sleeps deep all night. In the morning her dad kneels at her bed and watches her wake up. She reaches for his face, and smiles, and is herself again.

Are you tired of hearing about my child's brushes with death? Me too.

Friday, December 05, 2008





My Mother-in-law once told me that once, while carrying around my chubby, screaming, ear-infection prone infant husband-to-be, in the middle of the night, for the 10th night in a row, she had a brief fantasy of grabbing him by the ankles and slamming him into the wall.
But she didn't, and therefore Zar is 30 years old today!
Obviously a big milestone birthday. This morning he got a cable knit sweater that looked cooler at 5am on Black Friday, and a Wii game we already own. And I failed to wake him up on time for work.
Sometimes, like my mother in law, I want to kill Zar. But rarely. He no longer screams and cries at night, no longer has ear infections.
He does twist his ankle every time I force him to go hiking, has a 30 year love affair with TV, and bases his emotional stability on whether the Utes beat the cougs.
I met my husband on a Sunday night at Ward Prayer. A true Mormon Story, like something you'd see on TLC-I was thinner and young and wearing a sleeveless shirt as I didn't want to even KNOW someone who would judge an unmarried mormon girl for wearing a sleeveless shirt. I got up from the couch to go get another cookie, (my world revolves around cookies) and on my way to the kitchen could see that there were no more cookies. And yet kept walking, thinking "what am I going to do once I get to the kitchen? Turn around and come back? And there was my husband, also thinner, young, using his drivers license to prove that his name really is Zar. Which I used to find out his last name and immediately try it out with my first. He was not wearing a sleeveless shirt.
Married a year later, much to his parent's delight, who thought his TV love affair may turn out to be his only.
My husband is generous and kind to everyone. He always gives me the Target gift cards he occasionally gets at work. He tips well (but not as well as I) and can strike up a conversation with strangers, or waiters. He loves attention (Sagittarius) and talks, and laughs, loudly.

My husband is a great dad. He loves his little girls and sings them songs and gives them kisses. When Charlotte had her clothes cut off her for her ambulance ride, he went to Old Navy and bought her new jeans, cords, a sweater and a pea coat, so she wouldn't have to wear hospital pajamas home. He is intuitive with them--if I am nervous about sending Charlotte to school, and he says he is too, she doesn't go. If he says she is fine, she is. He calls his new baby Ella-Bell.

My husband is a hard worker. He very, very rarely takes a sick day. He currently works full time, then goes to school two or three days a week from 6 pm to 10 pm. He goes to a study session from 8 to noon on Saturdays, does homework nearly every night, and plays with the nursery kids on Sunday while I sit in the foyer with my babies. He is on the honor roll.

My husband is a great husband. He provides me with everything I need, and even when I was making nearly as much as he, my money mostly went to me things, clothes I wanted, groceries I chose, gym membership, overpriced hair dresser, lunches out. He loves me even when I am depressed, "making rash emotional statements", pregnant, cranky, or broken out. He doesn't make me feel bad when I chose not to clean the house, or make dinner, or get dressed that day. He wants to spend time with me.

Maybe he occasionally makes dumb comments about my stretch marks, drops chips on the floor...and steps on them, or stays out all night gambling on vacation. I hate the sports radio he listens to, I hate most TV, I am not wild about his snoring (the death rattle)-But...he's a wonderful man, a wonderful dad, a wonderful husband, and I love him with all my heart.

Thursday, December 04, 2008


THE STEALS! THE DEALS!

Since having kids, I don't get out as much, due to how long it takes to load two kids into a town car sized stroller, due to the fact that Ella's feedings require a certain amount of nudity I prefer to keep private, the number of accessories Charlotte requires for a day out to continue breathing and all that. (you must bold the word nudity, always. Or in my family--nudidity)
BUT...at 9 am every morning, a new item is posted on BABYSTEALS.COM, and I am quite dedicated to being there to see the new images upload. Just one item. Usually a high end non-nesscessity: a ultra luxe diaper bag, an insanely expensive silky/furry tiny baby blanket, an incredibly detailed hand embroidered Chinese silk spit rag. But these overpriced items are always 50, 60, even 70% off, and they sell out fast, and I find myself FRANTIC to fill my virtual shopping cart before I lose out and some other mom gets that baby poncho with pom-poms.
Plus I love getting mail. And since being on maternity leave in early October, I have continued to receive a full paycheck biweekly, which I did not expect to occur past November 1. Making it especially tempting to purchase high-end baby items each morning and rabidly await their arrival a couple days later.
Last night Zar noticed Ella wrapped in her new Ally Zabba pink and brown silky/minky blankey, original price a freaking SIXTY DOLLARS, bought by me for a mere $25, which also pleasingly sold out by 9:07 after by purchase was complete. He questioned my wisdom for spending my non-income on non-essentials, at Christmas time, when we have my medical bills, Ella's medical bills, Charlotte's never ending medical bills, and owe A LOT of tithing. I promised to be better, to be frugal, stop going out to lunch and buying silky things and thank goodness the girl's Santa picture is already paid for and I did such a good job on black Friday at 4am.
This morning my paycheck didn't come. And I bought Charlotte that poncho, pom poms and all!
BOOYAH, another STEAL!

Wednesday, December 03, 2008



Ellasaurus is an angel baby. I feel guilty bragging but it's nothing I did--she is just a natural sleeper. Yesterday I woke up at 6:30 am trying to remember when I fed her last, which turned out to be 10 pm the previous evening. Sneaking into her room I whisper "Elwa?" and she starts awake and does her dinosaur squak and I feed her, and she drops back to sleep for another two hours. This morning she got up at 5:30, but only because big sister had a bad dream and woke up wailing. Charlotte then did her usual, laying in bed from 5:30-6:30 laughing, calling for mom ("Ha? Ha?") and pulling off her oxygen. On last check she was face planted in her mattress snoring away.
It's 8 am and one of those rare mornings I decide to take some serious me-time and go to the gym at 6am. Hilarious how me-time is now going to the gym, when it used to be a neccesary evil that happened to make me feel good.
To those who think I lead a rough life with Charlotte and her emergencies and medical devices, don't worry. Most nights I sleep at least 7 consecutive hours, and thats with a seven week old baby. Some days I get to the gym. I have sister-night and a lunch with Amanda and Jack almost weekly. I'm fine and we are fine.
If there is anything I've learned it's that Charlotte is in God's hands and so am I. Sometimes I forget that and freak out and cry and sob that it's not fair, but God can do anything, and He made her just as she is meant to be. One day He will take her home and that will be hard for me, but not for her. For her it will be a huge celebration, with those who went before her clapping and hugging her, notably her great grandma I never met, her 2nd favorite pooch Molly--and she will be walking and not have anything taped to her face or stuck in her ear or surgically implanted in her tummy. It will be the ultimate graduation party. For the rest of my life she'll be watching me and sending me "tinks" as we call them on the trisomy message board, little signs to say she's happy and here. To think of losing her breaks my heart, but if I could see what awaits her I know it would be hard to ask her to stay.
Charlotte is fine, no better or worse than ever, but now and then she reminds us to treasure the time we have with her, with everyone. You never know, you just never know!

Wednesday, November 26, 2008


Three Years Later...
I should be sleeping. Last night Charlotte went to sleep at 10:30 wearing an oxygen mask because she will not breath through her nose. At midnight Zar woke me up to "snuf" her--i.e. suck all the snot out of her head with a bulb syringe whilst she screams. At 1:14 she had a fever of 102.1 and wouldn't stop sobbing, her toes were blue, the rest was red. She got motrin and a cool bath and bounced in her baby seat like an infant, not a 23 pound toddler. She slept and I checked at 2, then 3, and she was still hot. Tylenol. At four she was crying again, albuterol treatment, honey for her cough. Ella ate at 4:30. At 6:30 Zar called from her room--still hot. 103.1. More motrin. Another bath. Snuffing. At 7 I called the doctor. Appointment at 8:30. Now she is sleeping, amoxicillian on board, Ella is sleeping, and I am typing, like an idiot. GO TO SLEEP. I can't sleep, I have two babies.
Last week I was waiting for Charlotte's school bus, trying to get one more thing done before it came--and the phone rang. I picked it up and ran outside, all apologies for not waiting by the curb. No bus.
"Is this Charlotte's mom?"
Uh-oh.
"There's been an emergency. Charlotte isn't breathing. I will call you back."
A wave of...calm! I hurry inside and pack a diaper bag. I feed the baby. I changed my shoes even. We are going to the hospital and I must be ready.
The phone rings again--Charlotte is breathing. I can hear her crying. Send her to Primary's, I say, no one else knows what to do with her.
I call Zar. I put Ella in the car and I leave the garage open so the driver can drop off Charlotte's wheelchair later. I rush to the hospital, and when I am within a mile, I hear a siren. Everyone pulls over, and lets my baby's ambulance fly by. I feel entitled to cut off a Taurus and speed behind her to the hospital, where Zar is waiting. Charlotte cries. She is pale, she is snotty, she is upset and naked. Her darling pink and gray sweater has been cut off her body.
But...we go home three hours later.
We haven't spent more than a night in the hospital in almost two years. Incredible. I don't remember how to do it, to suspend myself in time, ponytailed, pajamaed, wandering the halls at night. I have a life again, I have a baby. I have TWO! I don't have time to live in the hospital.
So, today, I let Charlotte sleep. I let the antibiotic work it's miraculous magic. I hope for clear breathing, good saturation, pink lips and toes, my smiley girl back from death's door yet again. I hope we can stay home.