Tuesday, October 23, 2007

It never ends...

Just when I think I can catch my breath.....

So last week was pretty crazy. I took all the kids in for their yearly appointments. Lu was thrilled to find out that she needs glasses. She has been telling me this for months and I didn't believe her (but to be fair, she also tells me she needs braces and a cast.....). Norah's appointment was stressful. She is developmentally behind. I know this. She also has issues with both of her eyes. They both wander and I don't think that she sees very well. The pediatrician thinks that she is "officially" developmentally delayed. Again, not a huge surprise, but still hard to hear. She is 15 months old and she doesn't walk or support her weight, have any words or seem to recognize any words, she doesn't do a lot of things that 9 month old are supposed to be doing. The good news here is that now that she is "official" we qualify to start on the rounds of occupational therapy, physical therapy, speech therapy, etc. We might even quality with the county for them to pay for some of it. Either way, we can have a game plan. The bad news is that this means one million doctor appointments. Gah. Norah has hit some of her marks late, but she has hit them. I am not sure if this delay is just Norah needing a bit of help and being on her own timeline, or if she really is not capable of learning to do these things.

She was also diagnosed at too skinny or "failure to thrive". Apparently she doesn't eat that much. I do feed her, but she is my third. I give her some food on a spoon, and often small pieces of what we are eating for lunch or dinner while she is in her chair. I just never paid that much attention to how much was actually going in and staying down. Not enough. So, I am supposed to feed her / offer her food multiple times a day and get as many calories in her as I can. Not as easy as it looks. She has rejected Ensure and will drink whole milk. I might move to half and half. I make her oatmeal with lots of butter and sugar and mashed potatoes with sour cream and butter, but would welcome any high calorie, healthy foods. A friend suggested Greek Style yogurt, it has like 20 grams of fat per cup. That is the right idea.

Yesterday I got a call from my doctor that she wanted to "discuss some test results with me". I had gone in for my 16 week screen (blood test). This pregnancy is considered to be on the low end of high risk. She decided to do all the screens to put my mind at ease and rule out lots of things. When SHE wanted to talk to me, I knew something was wrong. Usually the nurse just calls me to say "everything is OK". I immediately went to the Internet and googled the test to see what it could be. I learned a lot. This test is to screen out things like Spina Bifida, Downs and other neural tubal defects. Gulp. I also read that it only has a 65 percent accuracy rate. Many doctors won't even recommend the tests b/c it comes back positive and then people stress out and they get more tests and almost always everything is fine. It isn't worth the stress. Lucky me. When I talked to her, she told me that I tested positive for a possibility for this baby to have Downs. The test can't tell you if your child DOES have it, just gives you a probability number. In normal pregnancies for people my age (33) the changes are like 1 in 10,000. Often when people come back with a positive it will tell them their chances are 1:674 or even 1:68. Mine came back 1:10. That is high. High enough to recommend an amnio. I worry a bit about that because the chances of miscarriage with an amnio are like 1:150. Most of the time this is an option so you can think about termination. In the case of Downs, termination is not an option for me. There are, however, some other NTD's that would make me sit down and really, really think. Also, in light of all that has happened in the last 6 months (much of which is still being dealt with, daily, and it feels like an uphill battle most of the time...) and the Norah stuff, I want to know what I am going to be dealing with. Will I be dealing with one special needs child or two? Or none?

So, there you have it. We have the big test on Thursday. This was the day my husband and I were supposed to go to Disneyworld for the weekend (no kids) for a friends' wedding and a fun getaway. Instead, I will be having a needle stuck in my uterus and have to come home where I am not allowed to walk or lift for 5 days and hope that I don't have a miscarriage. Then I wait to find out the results. Then we can go trick or treating. Sounds like a fun weekend, doesn't it?

I don't mean to sound doom and gloom and depressed and in fact, I am doing much better today than I was last week (thank you drugs....). I just really feel that I keep getting knocked down and then I brush myself off and stand up again and then get punched again. I just need it to stop. No matter what the test reveals, it will be better than not knowing for the next 5 months. And, I still have a 90% chance that things are fine. And if they aren't, there are worse things. Prayers are always appreciated. Not for a particular outcome, but for peace and strenght to get through the next few days. Also pray for Jacob to suddenly be calm and stop figuring how to rip the childproof handles off the doors. And to stay out of the fridge. And to stop elbowing me in the chest. In fact, if I could outsource Jacob things would be much different in this house. :-) Any takers? Carina? JUST KIDDING!

If anyone has had an amnio before will you fill me in? How much does it hurt? Do I really need 5 days after to take it easy? Just curious. I just went to Trader Joes and loaded up on Pirates Booty (my crack), frozen Orange Stirfry chicken, stuffed pork chops, Korma sauce and Naan for easy Curry, Granola and Caramelized Onion and Gruyere pizza. Seriously, I want to marry Trader Joes. No "cooking" for me this week, but we will still eat very, very well.

I will try and post pictures of the pumpkin patch and the girls matching orange dresses. I have to down load them first........

P.S. Does anyone have a good book recommendation? I will read anything and will have some time on my hands. I would love to dig into a few new books.....

32 comments:

wendysue said...

Yuck Bek. Just like they say at McD. . "You deserve a break today!" I'm sorry that there were so many things all at once, on top of everything else. I think one good thing with Norah's "official" diagnosis is that now you can get the services. I think here beginning at 18 months they qualify for free services from the school system, so she may qualify for those soon out there. Hopefully she is just what you said "delayed", which means that she'll catch up, just on her own time. Whitney is still doing some catching up, but with the in-home visits is turning the corner now with her speech.

As for the little stinker on the way, we just never know huh? Matt's sister has a little boy (almost 5 now, I can't believe it), that ultrasounds and initial tests said yes to downs, I'm not sure if she had an amnio, but another test said no, but she was glad she had that initial testing because when he was born, all the clear signs were there. She was only 24 I think when he was born. He had some health problems in the beginning but by about 2 1/2, he was really over all of that.

Hang in there! I'll give you a call soon. I'm heading out to CA for my sisters father-in-law's funeral, but I'll be back by Monday.

As for a book, we just read Twilight by Stephanie Meyer for book club, it's a cheesy young adult book, but it's a quick read and pretty good. It's also a series of 3, so if you like the first you could have 2 more to read! (Or you could try to get an advanced copy of Chris' book "Eventide Masquerade. . " :)

Julie P said...

BEK!! Be well, friend.

On the sidebar of my site is a link to my "Good Reads" shelf...a few of the books I've read the past year, and their rating.

c jane said...

Your endurance amazes me Bek. I am in awe.

Mayhem said...

Wow, that sure is a lot to deal with! And I'm sorry you have to miss your mini-vacation with your husband. Will the kids still stay with someone else so you can get a bit of a rest?

Just so you know, even with all you have going on, you still write with grace and composure about everything! I wish you all the best.

Emily said...

Prayers are coming your way, sister. I know you'll make it.

Carrie said...

Wow! That's a lot to deal with all at once. I'll be thinking about you and sending good thoughts your way!

more caffeine, please said...

I am praying for you - you're amazing. I would take Jacob for you if I lived near. He and Mac could see who could escape from the dog run the fastest...

Ana said...

OH my word ... too much! I am glad you stocked up on some TJ's yums. That will help.

I've had two friends give birth to DS babies in the last 5 years or so. One knew starting at about your stage of pgcy. For the other it was a surprise at birth. It was much better to know so they could be prepared to treat associated medical conditions asap. I'm glad you have a chance to know one way or the other.

Thinking of you, praying for you ...

La Yen said...

I love you. Put Cubby in a box and send him to EP.

And read "The Last Chinese Chef."

And know that Heavenly Father knows you and your kids, and knows how it is supposed to be.

compulsive writer said...

The Ladies Auxiliary

Prayers are on the way.

And I love what La Yen just said, too.

Hugs too.

Queen Scarlett said...

Adding my prayers and a - La Yen says exactly what we wish we'd said.

If you're looking to be a bit bawdy:
Trading Up by Candice Bushnell

Something with a bit of everything and lots of girl power:
Angry Housewives eating Bon Bons

Something beautiful and lovely:
The History of Love by Nicole Krauss

YA novel:
Keturrah and Lord Death

Children's book that will make you laugh:
Martina the Beautiful Cockroach

ps. I love that you get back up every time. Thanks for always teaching me.

Miriam said...

Definitely praying for peace and strength. I haven't had an amnio, but a friend did and for her it wasn't so bad. She said it didn't really hurt, but was wierd feeling and of course a tad nerve-wracking.

The five days, if you have good help, might not be a bad thing. I feel a little like your daughter wishing for "a cast" or something innocuous every once in a while to take me out of one of the busier weeks. But I don't imagine for a minute waiting and being careful like that would be much fun or very relaxing at all.

Sorry you have to go through this, I'll be thinking of you.

Bek said...

Thanks for all your kind words. I am feeling the love in blogland.

I am feeling much better about things. I just want to know. And I just remember my famous other life motto "it is what it is".

I was just the other day thinking what La Yen said. God knows who my kids are and I trust that...

Geo said...

Bek, I want to add my love and prayers too--for God's comfort, angels, blessings, all our love, and your own deep faith to sustain you. I think you are amazing.

Geo said...

P.S. I was just thinking, God must have such trust in you.

AzĂșcar said...

I don't know, El Guille is driving me UP THE WALL INSANE CRAZY today, so maybe a little Cubby would occupy him?

Pillars of the Earth- about the building of a medieval cathedral in southern England, I think you might like it.

For escapist fare, let's see, why don't I send you an invite to GoodReads?

Lindsey said...

So sorry you have to go through all this stuff. (Uh, I'm going to stop complaining about my life right now.)

I hope everything turns out fine.

I like the #1 Ladies Detective Agency books. Always happy, good, and uplifting.

And then there's also anything by P.G. Woodhouse. (We can't get enough of Jeeves and Wooster,)

~j. said...

Bek, I want you to know that you are not coming off as "doom and gloom" -- you are among friends and we appreciate your letting us know what's going on in your life. I love you.

Camille said...

Wow Bek. I was hearing that song from about 10 years ago when I was reading your post. "I get knocked down, I get up again..." I'm so sorry it's all coming at you at once right now. What an absolute crazy nightmare.

Books - Read the Twilight Serious by Stephenie Meyer - there are 3 right now & the next is due in 2008. We have several threads in the book forum on TT. You can read all 3 in the five days they are fast reads. Get them!!! (The author graduated from BYU)

Kathy's Korner said...

Bek!!!!!! I was so excited to see your blog up again, missed you tons!!

BIG HUGS coming your way. Big ones.

And just stick Jacob on a plane and I'll pick him up on the other end. He and S will have a ball. And I wanted to do some redecorating anyway. :)

I'd put off that ol amnio. Another week won't hurt...and go to Disney....you need to be in a dreamworld for a few days!

Sarah Jane said...

hi bek-
Sorry to hear about a really tough day! As a mom, I totally sympathize!
Go ahead and email me:
sarahjanestudios.com
I have been wanting to get going on illustrating some black/brown babies for a while. I have had a few requests. I'd be happy to hear specific requests...shoot me off an email when you get a sec;)
www.sarahjanestudios.com

away2me said...

Sorry you have so much on your plate. I know you'll make the best decision for you and your family. I know I would want to know in order to prepare, 1:10 is a tough number to swallow.

As for books I totally agree with Camille, get the Twilight Series, buy all 3 at once, you'll read them faster than any other books before. Also The Kite Runner is a good book.

Stephanie C. said...

I had an amnio when pregnant with my son. I had all sorts of pregnancy complications with him. My screening test came back with odds like yours for DS. We decided to do the amnio since I'd had complications. If DS was diagnosed we were still keeping the baby, we just wanted to be prepared. I was a nervious wreck before the amnio. Then I called my mom about it. She'd had difficult pregnancies. On the last one, she had to have amnios done every 2 weeks to check the baby's lung development. This was before ultrasounds. The doctor would feel her belly to see how the baby was positioned and do the amnio! It made me feel better to know that nowadays doctors use the ultrasound to guide them. I felt fine after the amnio...went back to work actually. But I had a desk job and so I was able to take it easy. With my daughter, the odds for DS came back the same. We had a level 2 ultrasound done and based on those results felt confident enough that she didn't have any disability and so we skipped the amnio. I also had no pregancy complications with her. I read somewhere a couple years ago that some women just have naturally high AFP levels and this doesn't mean they are at higher risk for DS child. It is very stressful to go thru all this but seriously, I find that strong support from family friends, lots of prayers, and a double order of McDonald's fries can do a lot to give you peace.

Bek said...

Thank you so much Stephanie for you story. I know that the odds are very much in our favor, and we are still a bit early for the Level 2.... I think that it IS the stress that gets you. It is nerve wracking.... I appreciate your story so much. In the end, it doesn't matter if the baby DOES have DS...just waiting and stressing is the worst.... yuck.

Mandy said...

After everything you've been going through you don't need this. I hope everything turns out fine and that you can get a break from all the stress. Big hugs to you and hang in there.

Suzie Petunia said...

When it rains, it pours! You have so much to deal with... my prayers for peace are with you and your family. You are strong and you will continue to pick yourself up and dust yourself off. I know I'm mostly just a "blogging friend", but I've learned what a strong person you are. You can do this!

As for a book recommendation... I read The Time Traveler's Wife a couple months ago and LOVED it. Seriously loved it. It is by Audrey Niffeneger.

sarah said...

Bek-

Holy Stress batman! I will definitely be praying for you...and all of yours! My favorite Mother Teresa quote is: "I know God will not give me anything I can't handle. I just wish that He didn't trust me so much."

angie said...

Oh Bek. My thoughts and prayers are with you. You are an amazing person. Keep brushing yourself off. Keep fighting.

Leisha said...

Did you watch the last American Inventor? You need the little stuffed alien that repeats over and over again "Everything is going to be ooooo-kaaaaaay"

You seem to have a handle on not getting too far ahead of yourself on worry and stress, just take everything one step at a time and I'm sure it will all be oooooo-kaaaaaay!

merritt said...

oh my goodness, i read "the glass castle" last week, or more accurately, in one afternoon/evening of last week. impossible for me to put down. i LOVE page turners like that!

stephanie garcia said...

Bek,

Our second daughter did not walk until 19 months and we ended up receiving services for her over the course of several years. You might remember that she suffered some birth trauma and eventually was diagnosed with mild CP. In our experience, it took awhile to get the ball rolling to receive services but we persevered and it was worth it in the end - Isabel loved therapy and did great. I am sure Norah will, too!

You are a great Mom and no matter what happens, this new baby is truly precious and has a special purpose in your family ... May you feel God's comfort and strength today and in the weeks ahead!

Maralise said...

I can help you with calorie boosting if you're interested (my son is "failure to thrive" and we have received some excellent advice from his dietitian.

I'd be happy to email you a list of the "recipes" that they gave us (or post them here) if you feel like you can take in any more new information right now.