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August 13th

We have a date for Lennon’s surgery.

Oh God, I am so scared. What if something happens to her? I couldn’t stand it.

I feel like I am going to die just THINKING about losing her.

My sweet baby, she has to be ok. She just has to.

I know I have to do this, but I *really* wish I didn’t.

Oh, and she has croup right now. My poor little monkey! Evy is sure to come down with it next. We are doing steroids and nebulizer treatments (which aren’t doing much, but at least she is in good spirits).

If you are the praying type, please pray for my little one(s), and for me to find the strength I need to get through this. I would greatly appreciate it.

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::sigh::

No, we did not have the amnio today.

However, we ARE going to have it – at 32 weeks when the baby is viable and out of the really scary preemie phase. That is what the doctors and nurses suggested today.

In a nut shell, this is what happened:

They did not find any soft markers on the ultrasound but warned us that they only show up in 55% of Down’s cases and to not get our hopes up. Our results were pretty high, they said, about has high as the average 48 year old’s chances of having a Down’s baby. They said that even if this baby doesn’t have Down’s, that SOMETHING made those test results come out the way that they did and that, basically, we should be prepared for anything.

They gave us some really cute ultrasound images.

He has Evelynn’s nose.

I can’t get my scanner to work since moving, but I will try to take a picture of the picture later and post that. I’ve been so bad about pictures.

I really wish that the amnio didn’t have such a high risk of miscarriage because I really would like to know. I know it’s selfish, but I would feel so much better if I just knew what to expect – you know?

I’ve been doing some reading

 It’s just hard.

Not knowing.

Overall things are going better though. It’s not that our situation has improved any, it hasn’t (lol). But, I am just SO done being depressed about it. It doesn’t suit me. I cannot maintain that level of unhappiness…So I’ve decided to just not be upset. There is nothing I can do about anything right now. My life is in a holding pattern and all I can do is enjoy being pregnant, enjoy my beautiful girls and my wonderful husband and take it day by day.

So, that’s what I’m going to do.

Oh, and I enrolled the girls in day care. They start on the 20th. I’m really nervous about it (and about how the heck I am going to afford it). But I think it will be a good thing overall.

I was driving to work yesterday and traffic was stopped on the freeway ahead of me (can you see where this is going already?).

I coasted to a stop and then watched the cars behind me, getting nervous because they were still going really fast. I watched until the guy who pulled up behind me stopped, he came up on me really fast and got closer than I would have liked…but he did stop. So I looked away – I think I was checking the gas or something – I don’t remember. The next thing I knew my car was flying forward.

I still don’t know EXACTLY what happened, but there were four cars involved total (mine being the first, I didn’t hit anyone else). The car behind me wasn’t too bad off and my car’s back bumper will need to be replaced, I think that is the only damage, but the last two cars are totaled.

I went into shock pretty badly I guess…it took me FOREVER to be able to call 911…my cell phone went flying due to the impact and must have gotten damaged because I had to eff around with it forever to get it to finally call out. I knew that I wasn’t really injured (just some soreness from the seat beltand getting HIT BY A CAR…but I was scared out my mind for the baby. Hubby was convinced for awhile that I had hit my head because I was very confused and couldn’t answer questions about how old I was or where I lived for several long seconds after being asked. However, nothing on my head hurts. I think I was just that freaked out and shaken up (literally).

After my first (hopefully last) ride in an ambulance, my first ER trauma assessment (I felt like I was in an episode of Grey’s Anatomy), and a very boring overnight hospital stay – I can say that the Bean is a-ok. Whew.

I started to cry in the ER when Hubby showed up – I asked him why the bad luck just wouldn’t stop coming theses days.

He had a really good point.

This was NOT bad luck.

I was not hurt, the Bean was not hurt.

Maybe this means our luck is turning around? I sure hope so!

Decision Time…

I got the call at work while I was on the phone with a client. I actually had to hang up with the client (someone I had been trying to get a hold of for MONTHS!) because I was getting some of the worse news in my life – to date.

My doctor, who is incredibly blunt, starting out by telling me that the results of the test that I had taken had come back positive. It took me a few seconds to figure out what test she was even talking about. Even once I realized what she was saying I didn’t panic at first. I figured that it had either come back positive for spina bifida (which we had already seen on the ultrasound was unlikely) or some other thing but with a really high ratio.

I asked what it had come back positive for.

She said Downs Syndrome.

I am surprised.

She explains that we really need to schedule an amnio to find out for sure because some babies with Downs are very sick, particularly if they are female.

I tell her that we are having a boy and that I don’t think I want an amnio.

She says that we really need the amnio so that we can begin to get an idea of what this child is going to need at birth etc.

I ask what the odds are that this baby has Downs anyway (fully expecting to hear 1 in 250 or MAYBE 1 in 100). I am only 28 after all!

When I hear 1 in 24 my stomach drops out.

Oh. God.

This is actually a possibility.

In shocking I agree to schedule the amnio, thinking at the time that I will probably do it but also knowing that I will have time in the meantime to make up my mind.

I hang up, shut my office door, call my husband and burst into tears. I am unable to stop crying for several hours, including sitting through a meeting at work.

Hubby stopped by my office to check on my and my friend who also works at my office also came in for awhile. I don’t remember much about any of it except sobbing my way through most of a box of kleenexand saying that I cannot believe that ALL of my children are going to be special needs!

That was yesterday.

Today I actually feel much better.

I have no idea what I am going to do about the amnio. I have an appointment to have one next Wednesday, but beforehand they are going ot do another level II ultrasound and another round of genetic counseling. I am sort of thinking that if they find any indicators for Downs on the ultrasound that I will likely not have the ultrasound – no point. If they find nothing on the ultrasound, I have a really tough decision to make. I asked if they would let me wait until after 24 weeks when the baby is viable, they said no but said that they wouldn’t tell me why over the phone (WTF?).

I just don’t know. I want to know now that I know it is a likelihood, but I wish I knew nothing at all.

I really wish I hadn’t done the quad screen. I only did it to check for spina bifida, I never thought about what it would mean to me if I got a positive on any of the other tests.

Having a child with Downs Syndrome is far from being the end of the world to me.

Is it what I would want for my child? Of course not. But as far as disabilities go…if that’s the worst we get I’ll be very happy with that.

I have been working with Downs Syndrome children since I was 16 and I have always enjoyed them more than any of the other DD children I have worked with. There is just something about them…

This child will be a blessing either way.

I just wish I didn’t know so that I didn’t have to make a decision about risking his life over an amnio (a 1 in 200 chance of miscarriage…much lower than the risk that this child does have Downs…).

Of course I don’t want to put my child at risk when I wouldn’t terminate either way. But now I feel like I need to know so I can have some peace over the next four months and so I know whether or not I need to prepare my family and friends that my child may not be exactly what they are expecting.

::sigh::

What would you do?

And…

My quead screen just came back.

This baby has a 1 in 24 chance of having Downs Syndrome.

Of course it does.

Of. Course.

I haven’t lost my job, yet, but the budget cuts are going through (best case scenario). I just got cut down from full time to 30 hours a week, and with these cuts I’ll either be laid off or cut further.

Alex is about to start the IVIG to prep him for the kidney transplant. We, OF COURSE, don’t have a date yet – but they keep calling him asking him to do random things (psych eval, dentist appointment, abdominal ultrasound, etc) and saying that it will be soon. It will be in LA for sure, which means they will look into making him stay out there in some sort of facility for about four months.

So, that’s just the background. Ya ready for today’s latest and greatest?

My mom can’t watch the girls anymore.

That’s not what she would tell you if you asked her, but she hasn’t watched them for the majority of the past two months and I don’t see things changing anytime soon. Before we went on vacation she wanted a week off (fine), then she had a whole bunch of doctors appointments (fine), then she wanted another week off but wasn’t sure when yet. When we went to Hawaii I asked if she would take her vacation while we took ours “No, I’ve already made other plans for the week you’ll be gone”. When we got back it was more doctors appointments, now her back is out.

I can’t really complain since she refused to let me pay her. But give me a break I need something reliable. When I found out that we were having twins I was REALLY hoping that this arrangement would work out since I could really afford daycare for two (and I sure as F*CK can’t afford it for three!), but I always knew it wouldn’t.

I found a program that will pay for day care for children with special needs if the parents can show a financial need. They said that they have a waiting list and the state budget cuts have left no funding for them to take new participants at this time. They will send me an application, but don’t hold my breath.

So, swallowing my pride, I tried looking into Welfare. Not pretty either. Because my father is a federal employee, he would refuse to participate lest it be an embarrassment to him. Since he is an adult in the home we are living in, they would need info and possibly fingerprints on him. That’s a no go. PLUS, even though we would qualify on every other level, our cars are worth too much money. I have a 2008 Matrix and Hubby has a 2002 Montero Sport. Not luxury cars, and if I end up losing my job my car will be the first thing to go. But right now Hubby needs his to get to dialysis and appointments and I need a nice car for work, it’s part of my job.

Right now Hubby has stopped working (it was under the table anyway) and is staying home with the girls. Once his IVIG starts we are SOL. I have NO CLUE what to do after that. I also have no clue what to do with the girls on dialysis days. I can’t even pay someone to watch them just for those few hours – not without his income.

Oh, and did I mention that I graduated (officially this time) last Thursday and that my student loans will be coming due around the time I am on maternity leave for the Bean?

Seriously, I’m ready to freak the hell out. I have been meaning to make an appointment with a psychiatrist, but I haven’t had time. (Ha!)

I am incredibly depressed and frustrated with all of this. I feel like a huge ass embarrassment. There is a stigma associated with having three kids in two years, with living with my parents, with going on welfare (not that I can even DO that).

How did I get here? I went to college. I got good grades. I went to a good school! I worked my ASS off.

I got married before I had kids.

I was trying for ONE baby!

Not that I didn’t or don’t want three…I DO….I just didn’t want them all at once.

I could have handled daycare for one. I could have taken a second job or looked for a new one if I wasn’t pregnant. I knew better than to get pregnant/have more than one baby before Hubby got his transplant! Life just didn’t work out that way. I just wanted one baby, just in case (God forbid) something happened to Hubby in one of his surgeries or something.

I don’t in ANY way mean to sound ungrateful for the girls or the boy. I am thrilled! They are the one amazingly perfect thing that I have going on right now and all of this stress stems from being worried about giving them all that they need and deserve. I am SO blessed to have gone from not being able to have any babies to being given three amazing miracles.

Now I just need to know how we are going to provide for them. =(

Are the powers that be going to toss me a life preserver anytime soon?

Cause, I’m seriously wigging out. Like, can’t sleep, can’t eat, can’t stop imagining what I will say at my Husbands/daughter’s funerals (though I have no reason to believe that either one of them is going to die anytime soon…it’s all just stress related), can’t perform at work, withdrawing from friends, bat-sh*t crazy!

To add further frustration, Hubby pretty much refuses (or is incapable) of making decisions or even – really – contributing to them. All of the major decisions in this family fall on me. Vacations, health care, employment, vehicles, insurance, finances, living arrangements, EVERYTHING. I have to tell him when to go to the doctor, when to take the girls to the doctor, whether or not Lennon will have surgery, and so on. Most of the time this is great, cause I’m bossy and any arrangement other than this would likely lead to bloodshed (or at least divorce) – right now I just REALLY want someone else to come along with some fantastic answers and plans of action and just make it so that I don’t have to worry about any of it. Just once.

PS Yes, I know how stupid it looks that we just went to Hawaii now. I had no idea I was about to lose my job before we went. It was still worth it.

Since most of you do not live in the state of California and, therefore, may not know I’ll start with the background details.

Our state is f*cked.

Basically, we have no money and none left to borrow and are on the brink of filing bankruptcy. Of course no one who works for the state is going to get paid after July which is when the state has announced that they will run out of funds to make payments.

Guess who’s employer is funded by the state?

YEP!

We had an emergency meeting last week at which we were told that we have enough money to stay in business for three months after we stop getting paid and that is it. Already the specific program that I work with (which is funded pretty much entirely on grants and donations) has lost funding this year.

So yea. I’m screwed I think.

Lovely.

Oh, and did I mention that my OB said she wants me off work at 29 weeks? Ohhh yes.

On second thought, maybe that’s a good thing. That’s about 10 weeks from now and then I could collect disability before I have to start collecting unemployment. ::sigh::

The most frustrating part is that I can’t even look for another job. Cause I’m pregnant. Who would hire me (in this economy particularly) just to have me go on maternity leave in a few months.

If I have a single hair left on my head by the end of all of this I’ll be amazed.

Oh, and I am currently waiting for my quad screen test results to come back. ::biting nails::

OB Appointment

First of all, what a HUGE difference seeing a high risk OB makes. And being seen at a real (fancy) hospital this time around doesn’t hurt either.

I knew I should have pushed harder to be seen by someone else when I was pregnant with the girls. ::sigh:: Oh well, too late now.

Anyhow, so the OB lady DID give me a hard time about my weight this time. lol I’m up 8 lbs since I got pregnant. Which, I guess is a lot…I don’t know. It doesn’t seem like it to me because from what I understand you’re supposed to gain around 25 lbs or so while pregnant and if I keep gaining at the rate I have been (about 2 lbs a month) I’ll be at around 20 lbs when I have this lil guy. Maybe she’s taking into consideration the 15 lbs I had yet to lose after the girls?

I’m sort of irked, but at the same time I *have* been eating really badly (french fries and coke anyone?). A bit more veggies and fruit and a few less sugary drinks is not going to be a bad thing. We’ll see what happens.

I refuse to ignore cravings or diet though (unless I develop gestational diabetes of course). Last night, for example, I was craving chocolate – so I ate a few Reese’s Pieces. I could have eaten the whole bag, but I didn’t. =) See? I’m learning.

What really shocked/impressed/scared the crap out of me though was that she said that she doesn’t want me to work past 29 weeks.

Um.

Really?!

She says she wants me off work by the time I started going into labor with the girls. She said she would consider letting me work a few weeks longer if it was a reduced work load (ie, no more driving all over Southern Cali like I usually do).

I was not prepared for that. Plus I am already in hot water at work (I have been really slacking and a complete zombie ever since we found out that Lennon was going to need this surgery). Ugh. Not sure how I’m going to handle this one. Of course I’ll do whatever I have to do to get the Bean here safely – stay tuned.

OH! And I’m 28 today. Totally snuck up on me too!

PS. Hop on over to the other site and check out how cute Lennon is in her helmet!

Aloha!

So, Hawaii was fantastic. OF course! =)

The girls traveled so well, Hubby and I can’t believe it. When we first boarded the plane in Los Angeles Lennon and I were seated next to a couple from France (I am guessing – but they spoke French and told me that they were from Europe). When we first walked up they glared at us and said “You’re sitting HERE?!” – they were SO PISSED! They wouldn’t speak to us, talk to us, nothing.

By the end of the trip (the girls spent the entire 6 hour (TURBULENT) flight sleeping or flirting with those around them – no crying at all) the couple was completely in love with her. Too funny.

So I do have some tips on traveling with infants/twins:

1) Baby carrier (backpack type) – these were a lifesaver on the plane. My arms would have fallen off if I had had to really hold her the entire time. Plus I felt like it really kept her safe when the plane was rocking violently side to side (eeek!). I was even able to go potty with her strapped to me – impressive, eh?

2) Blankies – toss them over their heads for night night.

3) Juice – if nothing else distracts them, this might save you.

4) Bring enough ear plugs for everyone around you! – I got two huge tubs of them at Rite Aid and even though we never needed them, everyone was really impressed that we offered. It makes people around you relax when they realize that you are not going to just let your kid scream, that you’re going to really try to work with them. And that makes people want to offer to help! =)

5) Ipod – cause you’re not going to have a free hand to do anything else. I uploaded an audio book to mine, it was a sanity saver.

6) Bring your own car seat if you can (don’t recommend it with twins because you will have enough to carry already) – but the car seats you can rent from car rental agencies SUCK! They are generally clean(ish), but they are CHEAP and difficult to use.

7) Bring the smallest stroller you can.

8) TOYS!

9) Disposable bibs and spoons ROCK!

10) Don’t stress, the babies can smell fear (so not kidding).

11) If you are traveling with two lap infants don’t be surprised if your airline separates you from your travel companion. At least on the planes we flew on there were not enough oxygen masks to go around if there are more than one lap infants per row.

That’s about it. More to come & pics on Flikr.

PS Lennon’s site has been updated, if you’re interested in following along.

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