The Feisty Lily

The Feisty Lily

Friday, December 18, 2009

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.

Thursday, December 17, 2009

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.

Hospital and Surgery

In the previous post, the last picture was of Lily at 10 am on the day she was admitted to the hospital.

The following picture is about 6 pm that day.


That picture is titled "Blue Baby". The shoe fits. At the emergency room, where she went for evaluation, her pulse ox was down to 80. Later that night, she was transferred to the cardiac floor for monitoring.

Lily actually wasn't put on oxygen until she'd been there for a couple of days. For the most part, it was just EKGs and monitoring everything constantly. I would go visit Lily, go to work, sometimes go back to visit Lily, go home and eat and sleep...repeat. The only variation was that sometimes I visited her in the evening instead of the morning.

They had decided to keep her until June 22nd to do a heart cath, because if the pressures in her heart were high, then they couldn't do surgery because "She wouldn't make it off the operating table." Her OHS (Open Heart Surgery) was scheduled for June 25th. Saturday night, Lily's pulse ox dropped into the fifties. They had to work with her and move her around and stuff to get her pulse ox back to normal (at least normal for her.)

Well, that Tuesday, they wheeled her down to the Cath lab. Some time later, I think about an hour later, the doctor came to talk to me.

Lily was now on a ventilator. If they took her off the ventilator, it would kill her. Apparently her lung had collapsed. Lily's left bronchus was, in just a matter of anatomy, between her pulmonary artery and her aorta. Due to the pressures in her heartl/lungs, that left bronchus had been collapsed.

She was admitted to the CICU (Cardiac Infant Care Unit). She was heavily sedated, but they had to keep sedating her. One of my lighter memories of that time is about this sedation. I had just walked in the door to her room, and the nurse that was stationed there came up to me, put her arm around me, and said "Honey, normally I encourage parents to talk to their baby, to interact with them, let them know that you are there... HOwever, in this case...If you wake her up, I'll kill you."

Hence, the "Feisty Lily" nickname. She quickly developed a reputation for being a stubborn pain in the ass, and I don't know how many times I heard someone say something along the lines of "You can definitely tell she's a redhead" or "Oh, so THIS is LILY!!"

June 24th, the cardiac surgeon came to me and said that we were going to go ahead and do surgery. Keep in mind, this was not long after I had been told that the pressures in her heart were very high (and right before that was that they couldn't do surgery if the pressures in her heart were high because it would kill her.)

This is Lily in the CICU before surgery.
Her hands were tied to her legs to keep her from squirming and trying to yank the ventilator out.

However, that night, Lily unexplainably popped a fever. So, they pumped her full of broad spectrum antibiotics. Surgery was put off until June 30th. June 28th...Lily popped a fever again. We thought we were going to have to put it off again. However, no, on June 30th, early in the morning, Lily was headed into surgery.

I bugged the doctors way in advance to make sure I was allowed to hold her before surgery. Due to having the ventilator in, I hadn't been allowed to, and I wanted (one last) chance to hold my baby (just in case). So, I did, in the pre-op area, while one of the scrubbed in people pumped air into her lungs, I cuddled her briefly, gave her a kiss, and told her I loved her.

Then we waited. We waited, and we took walks, and we waited, and we took walks. An hour and a half later, she was out of surgery. About a half hour after that, I got to see her.

Oh, my god, there are things you never want to see, and your baby after OHS is one of them.

She was under a paralytic on top of her sedation, so she wasn't moving at all. Her skin was gray. One of her eyes was partially pulled open by this thing that they had on her forehead to measure the flow of blood to her brain. There was a large bandage on the center line of her chest. However, the absolute worst part were these three large tubes that were coming out of her, from below her ribcage. These tubes were pumping blood and other discharge out of her chest cavity.

She looked dead, except for the stuff coming out of those tubes, and the reassuring beeps of the monitor. She looked dead, and I thought, for a brief moment, that I had lost her - even if her heart hadn't stopped yet, I had lost her.




She was still going to be on the ventilator for a while. The surgeon said he manually manipulated her lung while he was in her chest - and that it was literally stiff.

My mom was there, and so was Kyle. Mom instantly burst into tears. I didn't, but I couldn't handle consoling mom. I instead whispered to Kyle to keep her in the room, and I walked outside to the park. I sat there, my arms around my knees, and nearly lost it. However, instead of losing it, I called a couple of my March Mommies and let them know what was going on.

A few days later, the chest tubes were removed. Well, all except for one that they ended up putting in to the area around her lung to drain fluid off. 

She still hadn't opened her eyes, however, it wasn't too much longer until she did. Shortly after they put the tube in to drain fluid off her lungs, they took Lily off the ventilator, and put her on the CPAP. She looked like an alien. Actually, about the time she opened her eyes for the first time, I got to hold her while she was still on the ventilator. We had to be very careful, but it was wonderful. As soon as she was placed on the CPAP, I could hold her a lot more though. Oh, btw, CPAPS are fucking NOISY! LOL.




Basically as soon as they put her on the CPAP, they started taking her off of it, and putting her on regular oxygen for little bits of time. So, within a week, Lily was actually on just a regular nasal canula.



This is a picture of her first time off the CPAP, and on regular oxygen. Quite a change.
Oh, and yeah, Lily hates nasal canulas.  
That is a before surgery pic, but it makes me laugh every time I look at it. Its actually from the day she was admitted.

Around the first of August, Lily was transferred down from the CICU to the regular cardiac unit, where the next step of our journey began.

See next post.


Lets backtrack...

I have a feeling I should have started this long before Lily was 9 months old. It might be a good outlet for various frustrations. Heh.

For anyone who might read this, let me introduce my daughter.

Name: Lily
Nicknames: Yoda, Goober, Munchkin, Lily Bee. Li'l Bee
Age: 9 months
Height: 26 in
Weight: 14 lb 2 oz

When I was pregnant with Lily, all my ultrasounds came back normal. They lied. After having a rough pregnancy, I had Lily on her due date. About twelve hours later, she was admitted into the ICU.

I still remember it clearly. I thought everything was fine. She turned purple when she screamed, but I thought it was because...well...she was screaming. Who wouldn't turn colors. The pediatrician on call had Lily brought down to the nursery at 730 pm. About 8 pm, the pedi came back up and said we needed to talk.

She told me that upon examining Lily, it became obvious that something was wrong. Something was wrong with her heart, to be specific. They suspected she had a hole in it. Wow, did she ever...that and then more. They ran various tests on her, bringing in specialists from other hospitals, and stuff.

I went from having my baby in my arms, to not even being able to hold her but once in two days. She had wires everywhere, and a binky that covered half her face in her mouth. I hadn't wanted her to use a bink. They had also cut off her umbilical cord stump, and stuck an IV in her belly button. She was 7 lb 6 oz. 19.5 inches long.

I had her on Saturday. That Tuesday she was transferred to Children's Hospital. She was there until March 17th. They did so many tests, but the great thing about Childrens was that I was allowed to hold her any time that I wanted, except for during some of the tests. It was so hard to walk in there, see her laying in the little incubator, spend a few hours with her, and then have to walk away because I couldn't spend the night in there.

(We were even allowed to put clothes on her, overtop her EKG stuff..which is why you see no wires in this picture.)

Soon diagnoses were coming left and right. Lily had a large VSD, an ASD (which we actually didn't find out about until later), the right side of her heart was enlarged. Her aortic valve was bicuspid instead of tricuspid. There is this little duct at the top of your heart that is supposed to close by the time you are five days old. It didn't. This called a PDA. That's just what was up with her heart.

Brainwise we discovered that she had small, heterotopic gray matter cysts in the ventricles of her brain. This means, they said, that her brain wasn't fully formed. I wasn't worried about that, because a couple years ago it was discovered that I had the same thing. I've got a relatively high IQ, and am normal except for a few small health problems, and no balance (well, practically no balance). We were also told that she either has an arachnoid cyst OR an enlarged cysterna magna. Well, I've got the enlarged cysterna magna, so I'm not too worried about that either. If its an arachnoid cyst, though, its a whole 'nother story.

We thought that was all, and that was quite enough, thankyouverymuch!

She was released from the hospital, out of it for a week and a half, and promptly back in the hospital for a week.

While she was originally in the NICU at CH, they had told me at first that her heart might require surgery. However, the way they made it sound, it was months/years down the road. When she was admitted back into the hospital, suddenly it was days/weeks down the road. I almost flipped my lid. I admit it. I had a full out crying, ohmygodwhyme fit. I had enough sense to find someone to talk to. That pastor is now not allowed within fifteen feet of me or my baby, because I WILL deck him.

I ended up at another hospital that night for psychiatric evaluation. They wanted to keep me a few days to get me stabilized. Like I was going to leave my baby. Yeah. Right. I argued until I was blue in the face - and won. That morning, six am, I was back at Lily's bedside. Who wasn't going to lose their gourd with all that was going on?

After a week in the hospital, Lily was released. We had a ton of doctors appointments, including weekly pediatrician appointments. I originally breastfed, but didn't mind her having formula. Soon the cardiologist and other doctors were telling me I could no longer breastfeed Lily. That my milk didn't have enough calories in it. I stopped when Lily was about 2 months old. By 3 months old, she had just BARELY broken 9 lbs. Remember, she was 7 lb, 6 oz when she was born.

One night, my mom was changing her diaper, and she squirted blood out of her butt. The pediatrician ran a test a few days later, and said that Lily was soy AND milk intolerant. We immediately put her on Alimentum. I should mention at this point that Lily was also very colicky - she cried from 9 pm to 1 am every night. (This was particularly frustrating considering that I was under orders from the doctor to try to keep her from crying as much as possible.) Within the day, Lily didn't cry as much. By the end of the week on the new formula, her colic had basically disappeared.

However, she still wasn't gaining weight. A home health care nurse came out every week to weigh her. I got hooked up with Help Me Grow.

Then Children Services showed up. Someone had called them on me for Lily's obvious failure to thrive. What. The. Fuck?! The lady showed up with a nurse, and they set about examining Lily, and asking me questions. I named all of Lily's health problems, rattled off a list of her doctors appointments, told them that we had a surgery date...signed a bunch of papers allowing them to verify everything, and invited them back for a follow up. I had nothing to hide, but ohmygod I was pissed. If you think I'm mistreating my baby, have the FUCKING BALLS to ASK if something is wrong with her first! The nurse that was examining Lily finally said "You can't compare her to a normal baby."

Thank God that nurse had some common sense. CPS did come out for a follow-up visit that was very cursory - and asked if there was anything I needed. A week later, Lily had a shiny new crib to call her own. I love that crib! They also told me that if I ever needed help, I could call and ask for a voluntary caseworker. That has always been at the back of my mind. I will utilize them if it is for the best.

Oh, Lily also had reflux.

On June 18th, I took her to the doctor because she was throwing up a lot more than normal. He tested her pulse ox, and it was really low. We talked about admitting her to tank up before surgery.


                                       This is Lily about 10 a.m. that day.
Surgery and Hospital : Next post.