Wednesday, April 29, 2009

I keep thinking that today will be the day we hear our latest test results, but we are still waiting.
Three and a half weeks ago Zar underwent a chromosomal FISH test on "The Swim Team" as I affectionately will refer to them from here on out. It will tell us what percentage of the swim team has normal or balanced chromosomes, compared to unbalanced. Mathematically and logically, it should come out 50/50, but it doesn't. For whatever cruel reason, the number of unbalanced sperm tends to higher than half, sometimes greatly so. The doctor wanted this test done, and depending on the percentage, he will advise us whether or not to try in vitro fertilization. I don't know what number will be the cut off. All he said was "And if it's like, 90, 95% abnormal, obviously the chances of getting a healthy embryo would be small, and we would cancel the process."
I will probably be writing a lot about IVF or adoption in the days, weeks, months, years to come, so here is an overview.
Zar has a balanced translocation between chromosomes 9 and 16. This means that pieces of these chromosomes broke off, switched places and reattached. He has all the genetic material he needs, so he is generally speaking, normal. When Charlotte was conceived, she got one normal 9 from me, and one 9 from Zar which had an extra chunk of 16 stuck to it, resulting in partial trisomy 16. That nine also was missing part of itself which was stuck to one of Zar's 16s, resulting in partial monosomy 9. She then got normal a normal 16 from me, and the normal 16 from Zar, as everyone has pairs of chromosomes and only one of each pair (in 9 and 16) is abnormal in Zar. Had she gotten the abnormal 16 from Zar, she would be just like him in having a balanced translocation. But she didn't. She also could have gotten two normal chromosomes from him, or she could have gotten the abnormal 16 and the normal 9, resulting in partial trisomy 9, partial monosomy 16, which we feel would have been immediately fatal, resulting in early miscarriage. But who's to say?
We found out about Charlotte early in our pregnancy. We chose to carry to term, expecting her to pass away before she was born or shortly thereafter. She didn't and she was wonderful.
Ella came around as a surprise and we tried to test her chromosomes by CVS during pregnancy but the test failed and I chose not to repeat it, instead relying on blood tests and ultrasound to check on her. Plus I wouldn't have terminated anyway, so it didn't REALLY matter. To this day we don't know her chromosomal status. She may be a carrier and need to deal with these reproductive issues when she grows up, but she definitely does not have serious issues like Charlotte did.
Three days before Charlotte passed away, I had an IUD placed to keep me from getting pregnant, as history shows I'm not too great with the pill.I felt like I was so blessed to have a healthy baby I shouldn't push my luck. One day after Charlotte passed away, I said I wanted to start trying for another very soon. Whoops.
We set up an appointment with the infertility clinic. I figured with my fertility and the fact we have Ella, and my body did not miscarry Charlotte when the doctors said almost certainly it would, that I would have no issue getting pregnant using IVF with embryos that had been tested and shown to be healthy.
Instead we found out that there is a real possibility that even after drugging me up to get a whole lotta eggs, and using ICSI to inject each egg with a swimmer (which cannot be tested individually first) we could very well not get any healthy embryos and the whole thing would be a bust. Which will cost $15,000, is not covered by insurance, and could very well not result in a baby. And let's be honest, if it does result in a baby, that also means a long, tedious pregnancy, which I also do not enjoy. Also I am at high risk for hyperstimulation syndrome which could cause my ovaries to swell, my body to fill with fluid and land me in the hospital. And cancel our cycle. And lets not forget that even in a perfect cycle, with perfect embryos, there is still the shots, the surgeries, the waiting, the testing, the risks...the money.

So any day now we should find out what the next step is. Zar wants to do IVF, but is open to adoption. I am fine either way. Depending on the test results, I will either get my IUD removed and stop nursing Ella, which she is pretty much bored with anyway, or we will attend an orientation meeting at LDS Family Services at the end of May. The problem with that is I would really like Ella and my next child to be close in age, and we could wait for years at LDS Family. There are other options adoptionwise, and they are much more expensive but much faster. We will also be exploring these agencies.

The annoying part is Zar called last Wednesday....a week ago, and the test results are in, but are in dictation, which to me means they are waiting to be typed up or entered in or something. He called again on Monday and they are still in dictation, and he was told it could take another week. Luckily I am well versed in waiting for test results, and as test results go, they are pretty benign. I've mastered test result patience.

Ella has woken up and is exploring the tape holding her diaper on. Perhaps I should go check on her progress.

I will update you when I myself am updated.

Thursday, April 23, 2009

Ella is wonderful. I love being her mom. I love watching her grow and everything she does shocks me. She reaches for a toy, she sits on her own, she makes a hilarious high pitched squeal, and I am certain I am in the presence of genius. Ella wants to crawl so badly. She gets so frustrated laying on her tummy and trying so hard, she ends up crying and exhausted. I just smile and tell her she'll get there soon. Too soon, really. Just take it easy!
I miss Charlotte so much. I end up crying and exhausted too. I have good days and bad, good hours, bad minutes, moments of joy and despair. But I am comforted to know she was here as long as she needed to be. In her last few weeks, I could see a difference in her. She had started to understand that she was different. She had a difficult winter and missed a lot of school. Her final report card mentioned, more than once, that she seemed tired and had lost some of her skills she had in the beginning of the year. I cried when I read that. Charlotte knew she was different and that her time was short, and I think she stopped trying quite so hard.
I know, if she were still here, that seeing Ella sit, and squeal, and reach and grasp, would have frustrated Charlotte, maybe even hurt her little ego, and that's the last thing she needed. Charlotte knew she was loved, that she was popular and special. So she went to where she can do and be everything she wanted. Where she can fly.
I miss her but I know it was time for her to move on. She took it easy while she was here, she was my baby for so long, and it leaves me breathless to see how quickly Ella is growing. And to know what my baby Charlotte is doing now.
I'm sure she watches me cry and struggle and fight and just shakes her head and smiles. You'll get here soon Mom. Take it easy.

Tuesday, April 21, 2009

Welcome those from ICLW! I'm noticing people doing an intro post and thought I should do that, especially since what I posted last night is a bit heavy and sad.
My husband Zar and I have had two children, Charlotte and Ella. While pregnant with Charlotte we saw some funny stuff on ultrasound and eventually she was diagnosed with partial trisomy 16, partial monosomy 9. We did not expect her to live to term but she did and lived for more than 3 years. She was incredible and sweet and beautiful. She passed away two months ago today from a common respiratory virus, RSV.
Ella was born last October. She was a surprise pregnancy and we tried a CVS to find out if she is a carrier of the condition that led to Charlotte's diagnosis. The test failed but she looked fine on ultrasound, and I felt good about her health. We still don't know her carrier status but she is beautiful, healthy and has saved our sanity since we lost Charlotte.
We are currently looking into IVF with pre-diagnosis done on the embryos. I don't feel comfortable just trying for another child and hoping it turns out okay, and since knowing Charlotte I could never terminate a pregnancy that may turn out like her. We are waiting to find out what percentage of Zar's swimmers are normal or balanced compared to unbalanced. We are also open to adoption. We are excited but very nervous.
We are just learning to adjust to our new status as a "normal" family without a special needs child. It's hard and strange and we want our sweet girl back. I don't know what we would do without Ella. I am still grieving pretty hard but thank goodness for good friends, family and faith. Just taking it a day at a time. Oh and please excuse the above picture, I'd just given birth. Sorta. Surgically, rather.

Monday, April 20, 2009

In one hour it will be the 21st, and it will have been 2 months since Charlotte passed away.
Two months ago I was sitting in the corner of PICU room 31/32 with Zar and trying to see Charlotte. She was surrounded by doctors in blue, bright lights and wires. Occasionally I could see her foot, gleaming white. Or her hair. Or her hand.
I already knew Charlotte was not much longer for this world. I had known earlier when the nurse had sent us away so she could be intubated. I had asked the respiratory therapist to take a picture of me kissing her. As we walked away from her room, I ran back and took one last look. I tried to tell myself I was being silly and over-dramatic.
The intubation went well, her best ever, actually. I let myself be relieved. But at dinner, during the hour they kick you out of the PICU, Zar had said we should call and check on her. I didn't want to. I knew this was the...last...moment of normalcy. Relative normalcy.
And then we were sitting in the corner watching the doctors work. And try to place an arterial line. And a PICC line. And hook her up to 8 different syringe pumps. And then a ventilator.
Our family came that night. They were encouraged but I stood shaking my head. Why do I have to be so negative?
I went to the sleep room and lay down for awhile. I thought of her birth, I thought of her early sleepy days, I thought of the first time she looked me in the eye and the first time she smiled, and laughed. I remembered the therapist saying early on that a goal for her would be "to hold a toy at midline" and even that, even just that, made me think "She will never do that. "
But she did. She held a toy at midline. She sat up and looked at books and kicked over drinks within her reach just to be funny. She was amazing. I said her name into the dark.

Zar came to get me.

She just couldn't keep her oxygen up. Suddenly she was dropping like a rock. Her oxygen sats dropped to the 30s, and Zar and I were on either side of the bed, holding her hands, saying goodbye. The doctor said "Let's try one more thing" and I reluctantly let her hand go.
Out in the hall I made that horrible sound that mothers make. My knees buckled and I went limp in my husbands arms and wailed, and wailed, and wailed, and I hate to think of the other mothers that had to hear me that night.
When it was over Charlotte was on a new ventilator, and satting higher, and I thought "Why did we pull her back again? She just wants to go!"
I sat at her bedside til dawn and Zar went to the dark sleep room. At 7 am, when the nurses have to send you away for an hour, our nurse said I could stay, but that I really should get some sleep as it could be a long, long day. Charlotte wasn't coming back. We all knew it. But the last hours can be the longest.
I went to the sleep room. I woke up Zar. We talked.
We decided.
We called our family.
Maybe, soon, I'll talk more about what happened after that. When the night was over.
But not tonight.

This is a repost of an entry I did in December 2008 about BabySteals. (Which I bought a boppy from this morning.) They are turning ONE and having a blog contest...I figure I already wrote a blog about them and as their biggest fan, I am happy to repost it. And I already had the blog badge. Man I rock.

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) 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 day or so 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 my 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 already. 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.
This morning my paycheck didn't come. And I bought Charlotte that poncho, pom poms and all.
BOOYAH, another STEAL!

Thursday, April 16, 2009

Sheepishly I filled out the questionnaire. Yes Ella can sit briefly without help. Yes she smiles spontaneously. Yes she squeals with delight. Yes she can push up on her arms. Yes she turns to her name. Yes, yes yes. Do I still have questions about my child's health? Yes.
Why is she so yittle!?
I got Ella into the doctor a little earlier by calling and claiming she had a rash. (fingers crossed.)
Ella is officially 13 pounds, 5 oz. She is on the 10th percentile, which pleased me. She is 26.6 inches tall, the 75th percentile, which also pleased me. It apparently pleased Dr. Metcalf too. He felt the ratio was fine. A little skinny. Plotted on the growth chart, her weight has fallen off a bit. She is going back in 6 weeks for a weight check up. I'm going to power pack the little sucker a bit. No daughter of mine is going to be skinny. It goes against everything my angst ridden body issues represent.
In all seriousness, just writing down my fears about Ella helped to calm them. Seeing Dr. Metcalf and watching Ella flirt and smile and show off helped too. I feel fine. Ella is fine. She is developing fine. Thanks for your concern and for checking back. Whatever issues may arise down the road we can handle. No child is perfect, genetically or otherwise.
In other news, yesterday I dropped off Charlotte's wheelchair to her preschool classroom as a donation. It was hard. I had kept the little red wheelchair in the living room for weeks, and then moved it to the hall, but kept telling myself that it was too heavy to lift into the car on my own, or that I should really thoroughly clean it first, and take off the masking tape that says my daughters name, and find every spare nut and knob that came with it, and then I'd take it in.
In the end, I got up on Wednesday, lifted it easily into the hatchback, loaded Ella in the car and drove the three minutes to Truman Elementary. I didn't wash the seat covers. I didn't wipe the fingerprints off the arm rests. I didn't remove her name. I just took it, and wheeled it into room 41.
Her teacher said she missed her and I started to cry. I haven't cried over Charlotte in weeks.
I left the little red wheelchair and I will miss it, sitting in the corner with the white winged teddy bear sitting in it's seat.
It was just one more thing I had to let go of.

Sunday, April 12, 2009

I'm going to be perfectly honest. I'm worried about Ella. I told myself, and everyone else, that I wouldn't compare Ella to any other baby. I said that I'd already had that kind of stress with Charlotte, and now I've learned that kids develop on their own terms in their own time. So I'm embarrassed to say that I'm scared. Not a lot. But a tiny bit.
Ella is tiny. When she was born she was 8 pounds, four ounces, a good, chunky sized baby. By her four month appointment, she was just under 12 pounds, and had dropped to to the 10th percentile for weight. She is now six months old, as of yesterday. From what I can tell from my fiddlings with the bathroom scale, she is about 13.5 pounds. Which is what, the 5th percentile? A little less?
We were paying $450 a month for my insurance, fantastic, premium insurance at a part time rate, and with Boo, it was worth it. I canceled it right after she left us. We are now on my husbands less fantastic insurance, insurance that makes physicians (like my dad) roll their eyes and say "Oh Great." So we've had to change pediatricians, and I can't get into our new one for three more weeks.
I'm probably being dumb, because developmentally Ella is right on track. She can sit for brief moments on her own. She is eating solid food, she rolls both ways and is trying to crawl, she babbles and laughs and is a happy, darling baby.
And that's the other thing. She is so, so happy. She has had two fits in her life, she doesn't cry much, she just smiles and laughs and coos all..the...time. I probably shouldn't complain, but is that normal?
And she has very sensitive skin. It actually has gotten better, but her chest is covered with rough bumps and she breaks out into hives when dogs lick her.
And that's it. I'm being ridiculous, right? I've just lost a child. A wonderful child, with special needs, and maybe I know a little too much about genetic disorders, and development, and what can go wrong. Getting started with IVF, and the genetic counseling, and the testing, has made me look at Ella and say "How is it possible you were born normal?" Because really, the chances are very small.
Like Ella.

Thursday, April 09, 2009

Carefully they laid out on the table Trials one, two, three, four, five and six.

"Choose one," they said.

"Oh, any," she cried, with a horror born of the best of Halloweens,
"Any but number five. It would kill me. I promise you I would not survive."

They thanked her graciously, escorted her out, then gift-wrapped, addressed, and labeled
"Special delivery" Trial number five -

Sent with love from those whose assignment it is
to make sure you know that you can go
through trials one, two, three, four, ninety-nine,
Or five --
And, incredibly, Come out alive.

Carol Lynn Pearson

Thursday, April 02, 2009

I have a vision of Charlotte in my head. She is sitting on my lap so I'm just inches from her sweet little face, and she isn't wearing oxygen. She is smiling, her hands are on my shoulders, and she is wearing the pink shirt her dad got her with big flowers that I accidentally drew on with black sharpie while wrapping it for Christmas. And black pants. And bicals, her signature shoe. Here's the best part--she laughs like she always did, and then says happily "Mommy!" like it's the most natural thing in the world.

It seems like last year the winter went on and on, too, doesn't it? I remember sitting on this very couch looking out at the wind and wet and grayness, and getting all weepy because I wanted spring so badly. I was pregnant and had just thrown up and wanted to just go for a walk outside for heaven's sake. The next thing I knew it was the blazing hot summer and I was desperate for a little cold rain.
This year it seems the spring has come and gone back into winter. I am grateful there was a little spring, way back a month ago around the days Charlotte passed. The day she went home the sky was blindingly blue, and the sun through the car window on the way home was warm and I focused on that and not the empty carseat behind me. The sun came out the day of her funeral while we were at the cemetery and for a few minutes it was surprisingly warm and beautiful out. I sat in that folding chair in my black wool coat, clutching a white teddy bear and a pink tulip and felt as cozy as if I were just waking up in bed with Charlotte snuggled between my husband and I. And there were a few days it was gorgeous out, and with birds singing in the trees around us we went up to her grave and covered it with with beads and plastic Easter eggs and more tulips.
It is as if it is winter again. Picturing her grave under snow makes me sad. I picture the colors on her lollipop headstone running as it melts and refreezes again. The first month was full of sun and joy and happy tears for remembering her goodness. These past few days I feel left behind and cold. It is such a long weary road home. The least I could use is a little sun.
My hope lies in Easter. The year I was pregnant with Charlotte, I remember Easter feeling so much more holy than ever before, because it applied so directly to my baby and I. The rebirth. Triumph over the grave. The bright springtime sun and the forsythia and the empty tomb.
Oh I hope the spring arrives by Easter this year. I am in the midst of the days of darkness and sorrow. I will wait for the morning of the third day.