Saturday, May 26, 2012

Little Riot Girl pt 3

There were a few minor obstacles to be dealt with here and there.
At about 28 weeks (I think) I started having a lot of contractions. They would be about 5 minutes apart for about an hour, drop to ten minutes apart for an hour, fade away for a bit, do it again... all lasting around five or so hours at a time. Lame. The general consensus was I was just doing too much and had an "Irritable Uterus" so I was put on "Modified Bed Rest". Basically, quit running around for 5-12 hours a day and spend more time at home. If I went out to say the grocery for an hour, I need to go home and rest for two. That sort of thing.

It actually did seem to help.

At my last growth check ultrasound, we however, got more bad news.
My little Riot is not growing and striving in the womb.
She was in the 67th percentile for growth, then dropped to34, then all the way down to the 9th.

Her head was measuring on target but her abdomen was measuring two weeks behind. This gave her the diagnosis of Asymetrical Interuterine Growth Restriction.

It means that something is not functioning correctly within the womb and she is pulling what nutrients she can get to her brain and not getting the fat deposits and overall growth that she should.

Because of this she needs to be monitored very closely. If the conditions in the womb stay stable, she can stay in, week to week. But if she starts to show any signs of distress or drops weight or is overall not striving she needs to be pulled out fairly quickly.

IUGR is tied closely to stillbirth. :-(

The overall prognosis is we are trying to keep her in as long as possible, but get her out before the environment in the womb deteriorates.

We know that she will *most* likely have to come out as soon as she is to term. For some reason the incident of stillbirth dramatically increases after 37 weeks.
We know that no matter how long she stays in, she'll be small. She will most likely have to visit the NICU for a bit. IUGR babies are normally born between 3-5 pounds. The good news is, because she is already over three pounds, she should be one of the "bigger" IUGR babies. Hopefully, she'll stay in long enough for her lungs to be developed.

IF all the things line up correctly, she'll stay healthy in there until closer to the end of June, her lungs will be developed, she'll be close to five pounds, and I can have a normal (although induced) vaginal birth.

The complications that could come up revolve around if she is in distress or if she is still able to get nutrients and oxygen. She might have to be induced early. We might only be allowed to do a c-section because sometimes the stress of labor is too much for an already stressed, small baby.
We might have to do steroid shots to boost her lung development for an early delivery.

There's a whole lot of if's involved right now.

My doctors say that with proper monitoring I have no higher risk of stillbirth than anyone else as of right now. That it will be a slow deterioration with warning signs. After her next growth check, from there we will develop more of a plan.
Right now we are doing a growth check one week and the next week a Biophysical Profile. Depending on how they go, we will add in more doctor visits with more ultrasounds and more NST's.

I can't say I'm not a little scared again. I was fine with the clubfoot, but this does make me more concerned again about 'further issues'. The keep telling me that they are unrelated and I have no 'higher risk' than anyone else.. they actually say I have a lower chance than anyone else at the moment because we've already ruled out pretty much everything and the ultrasounds would have picked up anything else abnormal by this point. I'm also still scared that she won't be coming home with me. I'm scared she'll pass in the womb before I get a chance to rush to the hospital, even though they assure me that won't happen. I'm scared she'll have problems in the NICU and maybe not do well. Overall, I'm scared of not knowing.

I'm a little bit of a control freak to an extent. I at least need to know. I need to know what I'm facing. I need to know how to plan. I need to know what to research, what I can do. But I can't. I can't really know or plan for anything right now.

I don't know what comes with having a preemie baby. I don't know what comes with having a preemie baby with special needs. I don't know what "Stuff" is best... should I get a swing? Should I get a bouncer? Are they too 'stimulating" or "stressful"? Do they put her at the wrong angle? Is her casts going to be too heavy on her hips to be sat in those things? How do I sling her with casts? How do I sling a preemie baby? How do I sling a Preemie baby with Casts? Holy crap! It's just all very scary and very challenging.

I'm afraid for our birth. I'm scared of c-sections. I'm scared of not making the right decisions based on my fears. I'm afraid that the "Holistic Crunchy Mama" in me is trained too well in birth and medical interventions to make the RIGHT choices for Riot. What is I am so afraid of the interventions that I refuse something that she really needs? What if my birth fears make things harder for her, or make her not make it at all?

I'm afraid of what is going to happen after the birth. I'm afraid that I might reject her a little because she is not the "baby I dreamed of" instead of celebrating her for the baby she IS. I feel terrible for that.

I'm afraid that she will not be breathing, that her lungs will be too small, that there will be something wrong, she'll be too weak. That she'll be whisked away for testing and procedures and I won't even be able to see her. I"m afraid of PPD/PPA. I'm afraid of how I'll be treated.

I'm afraid of her being in the NICU. I'm afraid our breastfeeding relationship and bonding will be affected. I'm afraid of what the time I'll have to be away will do to my Rebel girl. I'm afraid the tubes and monitors will scare me. I'm afraid of coming home without my baby.

I'm afraid of Bringing her home. What do I do? What will having a tiny baby mean?

I'm afraid of what people will say. What will they think? Will we get mean looks? Pathetic looks of sympathy? Will people make mean comments about her casts? Will people think I've hurt her?

There's so much. So much to be scary. So much to be afraid of.

I'm holding up. I'm being strong. I'm taking things day by day.

But this blow after blow is starting to get to me. I can't enjoy this pregnancy at all. I know it's my last and that makes it all even more bitter. I already know I won't be able to enjoy my birth and that also makes me very bitter.

But I'll love my little Riot no matter what. I DO overall, have faith that things are going to be fine. I have faith that I can handle all of this. I have faith my little Riot choose me and she is going to be the perfect addition to our family. I just have to get her here. :-)

Little Riot Girl Pt 2

20 weeks to 24 went pretty well.
Other than some awful morning sickness in the very start things had gone okay and the pregnancy had not been overtly bad.
I was a little concerned how nursing my Rebel girl and being pregnant would good. (And honestly, that should be a whole other blog post) but health wise it did not appear to be affecting me or Riot.
I was insanely tied some days, but eh, I'm insanely tired some days when I'm not pregnant. :-)

We went to our 24 week ultrasound to get the rest of her measurements. It was taking awhile without a lot of talking and I was started to get concerned that something was wrong.

The ultrasound tech kind of looked over and said, "Your baby has clubfoot affecting both feet." I had heard of clubfoot before. I was, of course, a little crushed and concerned. She said, it's not a big deal and it is pretty easily corrected. Even that one of the girls that worked with her was born with two clubfeet. However, it can be linked to other issues and that is why they were trying to get a better look at some things.

We had still not seen her face and we wanted to rule out cleft palate for sure. Knowing there was one genetic defect was bad enough without having to have the concern that there could be more. I wasn't sure how to feel or what to think at that point.

For the most part we were told that everything they could see was checking out okay. They were able to confirm she had all her fingers and all her toes (and no extra) they were able to see that the cord had the proper  chambers, the heart the proper chambers, the brain checked out etc etc. She looked okay other than the feet but there were still a few things we needed to check out and she was not cooperating. (Little Riot)

We were told the doctor would come in and talk to us. We waited.
And waited. I was getting anxious and panic'y.

I was trying to tell myself, it wasn't a big deal. Things would be fine. No big deal. It was just clubfoot, you do some casting and bracing and it's over. But the concept and idea of MORE issues was weighing very heavy on me. As well as, what did this mean? How was her first few months going to go? Does this affect my birth choices at all? Will she be whisked away from me after birth? etc etc

The doctor came in and it went exactly like this, no joke

Doctor walks in, goes straight to ultrasound monitor, flips through images:
Doctor: "So your baby has clubfoot (.) (?) " - not sure if it was a statement or question
Me, "Yes, I guess it appears so"
Doctor: "Well, do you know what this means, do you have any questions?"
Me: "Well, yes, I guess probably about a 100"
Doctor: "we will schedule you a follow up"
Doctor hands chart to nurse, walks out.

Super duper frikin awesome.

thank goodness gracious that I had an appointment at my regular OB right after.
I finished checking out. Dropout had to go back to work, things were crazy over there that day and I went to my OB.

I think I added some things into the ultrasound above that I actually didn't know until I met with him.
He was the one to tell me that everything else looked good. He said she had her fingers and toes, and the cord was good, placenta, she had all her organs, the heart looked good, spine looked good, basically that there was no reason to believe it would be anything more than a case of clubfoot.
He said that combined with my quad screening that came up with next to no chance of Down Syndrome, Tri 13/18 and other "big" issue genetic conditions that things looked okay.

That was very reassuring. I'm grateful he was able to at least somewhat calm those fears.

From there we had to meet with the genetic counselor.
That meeting actually went well. The GC was very sweet. Dropout was not able to get off work. (We had been trying to avoid him taking any actual time off so he'd have more with Riot got her) so I brought Erin along who is a friend of mine. She was really sweet to come with me.

The GC said that Clubfoot is actually one of the most common birth defects and normally it is not associated with any other conditions. There's a few things that seem to be connected but because of the quad screening we had pretty much ruled them out. We talked some more about family history. It turns out after this came out that my mother told me my uncle had been born with clubfoot, also Dropout had a mild version that they call "pigeon toed" and a few other mild cases like that apparently ran on both sides of the family.

Therefore, I left pretty confident that there was nothing left to be concerned about. It was just a random case of genetic bilateral clubfoot and she'd just be a little special needs for a little while. No big deal. :-)

I did a lot of research. I needed to prepare myself for what we would be looking at.
What the plan was going to be. How we should treat it. Where are the best doctors?

I found a method of treatment that I really liked called the Ponseti Method. I found a great support group online of moms (and dads) from all over that have used the method. It was nice to find that.

The doctor that was closest to me and recommend was in Atlanta, GA. So I set up a consultation.

We set up a babysitter for Rebel (and Lil, Oh, who's now decided she wants her online nickname to be Punky) and drove down to Atlanta. It wasn't that bad of a drive.

Dr. Schrader kind of looked at us like we were crazy though. He said there was no point in me driving all the way down there because there's a doctor in Knoxville that he knew and trained with and would do a good job.

But hearing that from a recommended doctor did reassure me.
He confirmed what we would be looking at treatment wise.

About 4-14 days after birth we will start a casting process. The casts will go from toes to thighs and will be changed out once a week for about 5-6 weeks. From there she will have a small surgery to clip the Achilles tendon. Then she will go back into a cast for three weeks while that heals. From there she will get special shoes that have a bar that connects across the bottom and she will wear it close to 24 hours a day for about six months. Then she'll wear it less and less until she's only wearing it at night for about 4 years.

Overall, no big deal.

We were joking about ways to make it 'fun". Having someone decorate her casts. Painting them. Making funny t shirts for nosy people in public, lol that sort of thing.

I'm sort of interested in how it is going to challenge some of my 'crunchy' parenting practices.
Babywearing for example is going to be challenging but I'm very interested in trying!
Nursing will be a bit of a challenge with the casts and the bar, and I'm sure co sleeping could prevent a few challenges too... So there's some new fun crunchy challenges I'll have to face parenting a special needs baby.

I'll be sure to update and blog a little more on how all of that goes!

But there's still a little more to come...

My Little Riot Girl pt 1

So many times I've meant to come and update this. So many times I felt like I should come here and share what was going on.
At first I wanted to share the exciting news that we were once again expecting! But then, I didn't get around to it.
Then I wanted to share that we were going to have a new little baby girl! We were happy and excited about our new little one. She was a little difficult in the womb like her big sister Rebel so we nicknamed her Riot.

I wanted to come and tell everyone about our new bundle and all of our excitement.

Then the bad news started coming in. It was one thing, and then another, and then another. I wanted to blog it at that point just to document it. To share my emotions as I went through this step by step.

I wanted to share the research I was doing. The thoughts that all but encompassed my life.

But I guess while I was living it, and people knew, I wasn't really ready to face it all.

As I am pretty much weeks from delivery, I'm going to go through this as step by step as I can.

I AM still expecting. She is still very loved and very much anticipated. We still love each and every aspect of our little Riot. It's just been a bit of a hard journey so far.

So, this is part one.

First, we had somewhat planned and talked about adding a new little one into the family at *some* point. There had been no clear decisions made. However, in the mean time as I'd blogged before with the hives they had a suspension that I had a progesterone allergy and pulled me off birth control. We were doing the Natural Family Planning route... and honestly, it was working great lol because I pretty much knew the exact time and moment that little Riot was conceived. I knew I was ovulating, and knew something should be done to 'prevent' said little Riot from being conceived but thought, oh what will ONE TIME do? lol 

So here we were about 4 weeks later. I was still nursing so no real cycles to track or be late from so to speak so I took a test 'just in case' and figured it was just out of paranoia. Lo and behold the little plus sign came up pretty quick.

I think Dropout and I were both a little flabbergasted but we were still happy and excited. I'm a pretty fertile chic apparently ;-)

Everything seemed to go okay in the start. My doctor checked my levels immediately and did an ultrasound to date and make sure things looked okay after my previous losses and issues. I like that they take things seriously there and try to do what they can to make things go smooth from the start.

Other than a scare or two in the beginning when we couldn't find her, then couldn't find a heartbeat later on, things went smooth. My uterus is very tilted. (Almost "backwards" they say) so ultrasounds can be hard.

We had another scare later on when the doctor tried to use the doppler to hear the heartbeat, even at a point we should be able to, and couldn't find it and I had to be rushed to an ultrasound to check. Did an ultrasound on the tummy and couldn't find her, then had to do a vaginal ultrasound and found her. It was scary to be so far and feel like something could have happened. But it was just my silly uterus again and things were fine.

My thyroid meds had to be adjusted twice to make sure that things were okay and we had to do lots of bloodwork and checking but otherwise things were looking good. :-)

We were excited about going to our 20 week ultrasound to confirm things were going okay and find out what gender our little one was.

Dropout left work to come and we found out that we were having another little girl. Everything looked good on the ultrasound. She was being a little difficult and they couldn't do all the check off's they do at the 20 week ultrasound so we were told come back in 4 weeks to get the rest. But what they could see, looked good.

The plan was to come back in four weeks and get a look at the other organs and things we had been unable to see, then once a month for a growth check due to my autoimmune and thyroid issues.