Speaking of...

Today we had Lily's speech evaluation. They deemed that she was not far enough along developmentally to benefit from intensive speech therapy. So, we will have it once a month for now.

That's fine with me...my schedule is pretty full with Lily appointments as it is. Besides, the therapist said it was clear that we were pretty in touch with the therapies that Lily needed, and it was obvious we worked with her quite frequently.

I wish I could get her to say something other than "Ma". She seems to have even forgotten how to make the "Ba" sound, because she's all wrapped up in ma ma ma ma ma ma ma.

Now, it gives me the warm fuzzies to hear her say ma ma, but she needs to move on, and add another sound to her repertoire.

The therapist also asked if we were doing sign, and said that it would definitely be a good idea for her... give her a feeling of more control about her communication. So, hopefully she'll get to that point soon. I want to be able to teach her, and learn it myself, but not until she is ready.

I'm so tired it isn't funny, and Lily has yet another doctors appointment tomorrow. Lovely.

However, this an appointment with the new pediatrician, so hopefully the one we get this time will seem confident, and actually listen to me.

Snow, Feeding, and Constipation

So, Lil had been constipated since wednesday before last. When she went to her pediatrician, he wasn't worried because she was in a good mood, and her stomach wasn't taut. Even said she still had an appetite. Before she got constipated, she was eating all of her bottle. After she got constipated, it went down to 2-3 oz again.

So, yesterday, I called her GI and he called in a prescription for her. It was supposed to take a day to work. Within 5 hours she had 2 blow outs. I love her GI, he actually listens to me.

To moms out there: Trust your instinct, not always what the doctor says.

Lily's still asleep, which means I have time to actually update this thing.

She had therapy (occupational) yesterday, and we worked on Feeding. Beth got her to eat so much more than I normally can. I was a little jealous, but that doesn't make sense - she's a therapist. She's trained to do this stuff, of course she's going to have more luck.

When reading a post on WTE, I read about several mommas who already have their kids on sippy cups. We aren't even planning to try Lily on a sippy until 13, but most likely 15 months.  Its a little thing to be upset about, but to me its just another sign of how far behind she is.

Kyle and I worked on standing and crawling with her last night. I got her on her hands and knees, and he distracted her so that she was looking up, and not realizing what was going on. We actually had some success. She stayed in that position for a few minutes. We had similar luck with standing.

I realize, with Lily especially, its all about repetition and muscle building. If we keep working with her on it, she eventually gets it and becomes able to do it on her own. If we leave off for even a couple days, though, we have to start all over again.

Sometimes I still get depressed thinking about everything, and I try to remember then that I have to count my blessings. If we hadn't gotten Lily's surgery, she might not even be alive. If she didn't have so many therapy visits, and I didn't work with her so much, then she might be much, much further behind than she currently is.

On the 18th, we have her neurology appointment. Its the big one where we find out more details on her head ultrasound, and where to go from here. I'm nervous about it. I wish some of my friends lived closer. I'd like her to be able to interact with other children, and not just mommy and therapists and stuff.

I had a nightmare last night that I had gotten pregnant again. I was so against being pregnant again that in my dream, I was trying to gather the money to have an abortion even though the father was begging me to keep the baby. I love Lily so much, but I never want to go through this again.

Downtime

So, Christmas was pretty good for Lily.

I didn't think she'd be able to open gifts, but she tore right into them. We just had to keep taking paper away from her so she wouldn't get fascinated by one strip and forget the rest.

She got several things from my mom, and three things from Kyle and I. I got her a chatterphone because I'd been meaning to get her one...and kept forgetting.  Its to work on her finger dexterity. Then, I got her two one-dollar hats. I got those mainly because I wanted something I could crumble up in paper to surprise her with. He bought the tissue paper that she tore into.

I want a rocker. I want one so badly it isn't funny. Rather that bring her clear downstairs into bright light for every feeding, I'd like to just be able to sit in her room and rock her and feed her.

Hopefully I can get one when I get my tax return. Kyle promised to get me one, but he promised that before she was even born..so..... Not going there.

We were working on standing today. Lily has issues with standing. She will lock her legs and promptly bend at the waist. Today was the first time she managed to lock her legs and stand up perfectly straight. She can't do it for very long, but its a definite improvement.

I've also given her tummy a break today, and not tubed her at all. I just let her take her time with her bottle. She actually finishes 90 percent of it on her own if I just let her do it at her pace. She also has gotten mashed potatoes. She absolutely loves them.

Kyle's in Dayton tonight, so its just me and Lils at home. I'm taking the opportunity to touch up my roots. There are just certain things I don't do when he's around, and that's one of them. I get tired of the smart ass remarks.

I have a feeling I'm going to be pulling her into bed with me. I hate sleeping alone.

She has been digging tummy time lately. Its so strange. Today she laid on her tummy, craned her neck up, and watched several minutes of Supernatural with me. I loved it. I put her on her ladybug, and she goes 'round and 'round on it. Its cute.

I can't wait until Jan 18th. That is when we have her neurology appointment, and we find out more about that corpus callosum thing. I can't believe how much it scares me. I think it scares me more than her heart problem ever did.

I've got black satin sheets on the bed tonight. Maybe I shouldn't have Lily sleep with me. She might slide right off the bed. LOL!

Circling the Drain

The first time I heard that expression, I was reading a Harry Potter fanfic.  Its amazing how things you read/hear in the stupidest of places can stick with you. It has definitely stuck with me.

I feel like that's what I'm doing now. Circling the drain. Fighting against it, but still inevitably circling it. Hoping desperately that someone will stop it up, and stop the pull, even as I'm losing my will to fight.

I'm not suicidal. I wouldn't do anything that would take me away from Lily. I'm just losing my will to fight to do anything more than to survive and give Lily a life. I've stopped going on to my favorite sites. I rarely have contact with the March Mommies anymore.

My life consists of Lily and work. Lily, and work. Even Kyle barely factors in anymore. He causes me more anger than anything else. I care about him, and I think I'll always care about him...but I'm tired. I'm tired of always being the forgiving one. Of always being the one who stays quiet, who goes with the flow. Being tired of it doesn't mean I want to radically change it though. I'm not determined to suddenly stand up for myself and want I want...

I'm too tired for that.

Instead, whatever happens...happens. As long as Lily is taken care of.

She had therapy today. We worked on teaching her to crawl. I was so tired that I laid down on the mat and almost fell asleep. In CH, surrounded by screaming babies being put through their paces, I almost fell asleep. I think I actually did for a few minutes. Then, on the drive home, I could barely concentrate on my driving. My thoughts were wondering everywhere, and I was just so... angry.

I can't even say specifically what I was angry at. I don't know. I just know that I was.

Kyle's asleep on the couch right now. I look at him, and I think that I hate him. I look at him, and I think that I don't know how or why I love him...I just know that I do. I know that he is part of the force that keeps me circling the drain. I know that Lily and I need to get away from him, but I don't know how. I don't know how to start over. I kid myself by saying that I'm strong enough to just pack up, take Lily, and move away.

I'm not that strong. I believe so that I am unworthy of affection, of love. That I should be grateful for the crumbs that I get. I can't walk away from him because I honestly don't believe I'll find anyone else.

Lily was a character today. At one point, she was sitting perfectly upright, with her fingers interlaced, clasped high up on her chest. She was sitting, and looking around. Looking around with an expression on her face that said she was Lord of all that she surveyed. This child is a trip. I looked at her and said "you are such a dork." Her response? To smile at me, and continue surveying her domain.

That child has me completely wrapped around her little finger. Its kind of pitiful, really.

I was talking to therapist. Discussing what I'd read about children with ACC/DCC. The therapist said that she had children before with this, and that they had walked, they had learned to talk, etc. It gave me some hope. I have a GI appointment on Monday. I'm going to ask them to make a Speech Therapy referral.

I wish there were more hours in the day. I wish I made enough money that I could just stay home and take care of Lily. I don't want to be a SAHM, but maybe at the same time I would feel at least moderately less...burned out.

I"m watching The Signal. Its a little weird. This is very stream-of-conscious. Lots of people dying.

I'm going to be 27 in a few days. I was thinking about all that I had accomplished in life...and I realized the answer was...nothing. I couldn't even manage to have a healthy child. Yeah, I'm a *real* winner.

That wasn't a slight towards Lily. Healthy or not, I adore that little girl.

8 am is too early

Lily had another assessment done today to see if she would require (still) her weekly home health care nurse visits. I was hoping the assessor would say Nope, she's good.

Nope, she's not. I think the visits are going to continue until Lily actually shows up on the weight chart.

Bugger.

Don't get me wrong, I LIKE our HHCN Natasha. I just don't like getting up at 730 every wednesday. LOL.

Todays measurements:
Weight: 13.15 lb
Height: 26.5 in
Head: 44 cm

She's got a GI appointment on Monday, at 8 am. That's going to be a long day, because its also the day I work 8 hours. Ugh.

Oh, I think its possible for a child to get too comfy in the water. I had her with me for a bath last night, and she was laying on my chest, splashing the water with one hand. Then she'd try to roll over off me. Apparently she hasn't gotten the message that she could drown doing that, lol.

I cannot believe Christmas is next week. Holy hell. That just sucks.  Well, I got her tissue paper and box, though, so we're good. I figure she's 9 months old, there's no point in buying her something that cost a lot of money.

So Much Better

Lily doesn't have a cardiologist visit for three months now.

She's eating 2 ounces, like clockwork, out of her bottles, so we're still going to have the Mickey Button in for a while (The button replaced the tube). She no longer needs OT, but they are going to continue to have her come just to practice the skills she already knew.

I was researching missing corpus callosums today. Kind of some scary stuff to find out. Like the fact that Lily will, almost suredly, have some sort of learning disability. In the most severe case, she could have trouble walking, talking, problems interacting with others, and severe mental retardation.

This, strangely, is harder for me to cope with than her heart problems were. I always thought to myself, "I can handle a baby with physical disabilities, but not one with a mental disability." I have no patience for people with learning disabilities. It never occurred to me that Lily could be anything less than extremely intelligent. I don't know how I'm going to handle it if she is even moderately mentally disabled.

I know I'll handle it, just like I've handled everything else... I just don't know how. I'm afraid I'll get upset with her too easily when I'm trying to teach her things. When I look into the future, and see her bringing home "C"s, if that's the best she can do...will I be disappointed? Will I be able to hug her and congratulate her, and mean it? Or will I be disappointed?

Its a tough thing to think about.

Lily's day today:

Bottle at 9:00 a.m.
Therapy from 9:15 to 10:15 a.m.
Play from 10:15 to 11:15 a.m.
Nap from 11:15 to 1:00 p.m.
Bottle from 1:00pm to 1:30 p.m.
Play from 1:30 to 2:30 p.m.
Walk from 2:30 to 3:30 p.m.
Nap from 3:30 to 5:30pm (Yeah, I forgot she was due for a feeding.)
Bottle from 6:00 to 6:15 p.m.
Hot Wings nomming from 6:15 to 6:30 p.m.
Bottle from 6:30 p.m. to 7:00 p.m.

Yeah, I gave my child Hot Wings sauce (the hot traditional) to nom on...and she loved it. She fussed whenenver I tried to eat, because she needed to nom on it first. Too cute, and too weird.

Lily's just a wee bit strange, but I like her that way.

The therapist brought a "Spin and explore garden gym" with her today. Basically, put Lily on her tummy, and let her spin on it exploring things. Not really sure how this is going to go over.

Oh, here is a recent Pic of Lily:

Its Lily with her first build-a-bear, Chomper. Yes, the bandana fits her. Yes, we've put it on her. Pictures will happen at some point.

Feeding Issues

Shortly after Lily was taken off the ventilator, they started trying to bottle feed her. The first time, she ate 5 mLs. Soon she'd moved up to 15 mLs (half an ounce). However, she seemed stuck there. Now, when she was in the regular cardiac unit (C5), we concentrated primarily on feeding her.

They had told me when Lily was placed on the ventilator that there was a chance she would not be too fond of eating afterwards. Negative associations or something like that. However, soon a pattern developed. Lily would eat like she was starving up to about an ounce to two ounces... then she would just stop. Abruptly. You couldn't coax her to eat anymore. She was receiving most of her nutrition via an NG tube (feeding tube up the nose.)

This is a picture of Lily in C5 with Harry the Hippo, which some of the March Mommies sent her.

It soon became apparent that her feeding issues was not something going to be easily fixed. Around August 11th, they came to me and said it was either an extended (months) hospital stay, or we could put a Gtube in (Tube through her belly) and send her home. Obviously, I opted for the Gtube.

August 14th, Lily was released from the hospital.

This is a picture of her with the Gtube.