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.
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.
Surgery and Hospital : Next post.
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