Genetic Defects pt. 8 - Home? (563 hits)
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Submitted by SmalltownSally (View user info) at 2009-05-19 03:51:38 EDT
http://www.ubersite.com/m/121963 Cook's
The next few days were engulfed in a cottony fog. I was afraid to sleep... didn't even want to try. I was terrified that I'd wake up to her alarms, to a crash cart, to bustling nurses speaking in hushed tones and peeking sideways at me from the corner of their eyes, offering me water and stacks of gauze to wipe the tears that wouldn't fall. It was 2 days before I could actually look at her. Because of her tendency to retain fluids, they'd left her chest open, sternum spread, so they could have a direct line of sight on her heart at all times. It was covered with a clear patch to keep it sterile, and I had to warn the nurses to cover her up before I walked past her bed. I'd already seen her dead. It had taken weeks to forget the image of her limp, purple foot dangling over the edge of her ambient warmer before jerking out straight with the shock of the defib paddles. I didn't want to look at her when she was 5 and see her open chest and beating heart in my mind's eye.
Monday morning came, and Dr. Tam came to look at her before they made the choice to close her up. It was a short consultation before the nurses began making the rounds, kicking all the visitors out so that he could do her procedure at the bedside. I stumbled sleepily to the waiting room, clutching my phone in my fist. They would call when I could come back, just sit tight. The waiting room was crammed full of a large Mexican family - mother, grandmother, 6 kids with buzzcuts and rat-tails. I scrunched up on the couch and tried not to lose my mind with worry. I must have dozed off, because it seemed an inordinately short amount of time before my phone was ringing, and I was given the all clear. The close-up had gone off without a hitch... she'd have a first attempt at coming off the ventilator later that afternoon.
Emma improved daily, but I began to feel like I was circling the drain. I slipped further and further inside of myself, afraid to hope, afraid to plan, afraid to even discuss a future. I didn't want to jinx her. The recovery nurse came to ask where I wanted her to go to get better - Dell in Austin, or Scott & White in Temple. Or would she do recovery here in Dallas? I couldn't answer. All I wanted was to go home, but I was so afraid to voice the need. After 48 hours of contemplation, Medicaid answered for me. They refused to allow a medical transport. She'd have her month of recovery in Dallas. Merry Christmas, Mama.
The only person I could open up to was Jurgen, the friend that Shawn had introduced me to. We spent hours chatting to each other online, answering his questions, him striving to draw me out of the black cloud I felt so lost in. When we weren't talking about Emma's medical state, we talked about his little boy, just a few months older than Emmie, or movies, or video games. Anything to keep my mind in the right place. He was a champ. Never lost his cool with me, the eternal optimist, the shy flirt. Shawn had known exactly what he was doing when he put Jurgen in charge of getting the baby updates. He'd seen that matchup from a mile away.
At 2am on December 19th, a nurse shook me awake. "A room opened up on the recovery floor. If you like, we can move you now, or we can wait till morning, but the room may be gone by then..." I didn't hesitate.
"Give me 10 minutes to get our stuff together. We'll go now."
A private room... it was like heaven! Just the thought of four walls and no noise! My spirits rose like a helium balloon inside my chest. As the nurses wheeled Emma up, I followed with my giant suitcase, my pillow, my laptop, and Emma the First, the ragdoll I'd had since I was 2. In my mind's eye, I saw a glass-enclosed pod like #15 at Dell. A door. How great it would be to just have a door? But when we got to the recovery wing, I discovered that our room was nothing at all like pod 15 at Dell. It was so much better!
Emma went to a crib, a bed like any normal baby would have. A twin-sized bed was pushed into the corner with actual blankets on it. There were thick blackout curtains on the floor to ceiling window. A recliner that rocked. Dimmer switches on the lights. A table, a phone, a TV. A private bath, with - holiest of holies! A bathtub! I caught myself humming quietly as I made the bed up with pretty blankets for my daughter as the nurses got all of her equipment swapped over, leads changed, monitors switched on. They weighed her, showed me how to work the television and call button, handed Emma to me and left, closing the door quietly behind themselves. We were alone. ALONE! I finally managed to see the light at the end of the tunnel as I tucked my girl in, gave her her lovey to cuddle, and went to lay down on real, clean, crisp sheets.
Morning came, and with it came the endless flow. I was assured that there wouldn't be this kind of traffic in the coming days, but I had a whole new staff to acquaint myself with. I had no problem obliging. I loved it that they would knock and then had to wait for my permission to enter. After a month of being on constant display, I ate up the privacy I now had like a starving man does a loaf of bread.I couldn't keep their names straight, and in the long run it wouldn't matter. Christmas was right around the corner, and everyone was working weird schedules and covering for each other so that people could be with their families. We never had the same faces 2 days in a row. My own would be coming up the day before Christmas Eve, so that I didn't have to be alone. And Jurgen was coming that afternoon to spend his 3 days off with me.
The next two weeks were a blur of activity. Every day, the physical therapist was there to work on Emma's bottle skills, which were sad at best. Then the home health nurse would come to coach me on the nebulizer, or how to care for Emma's sutures, what signs to look for in case of infection, how to insert her nasogastral tube for feeds, how to program the feeding pump. They all joked that by the time we went home, I'd be able to pass a nurse's exam with my eyes closed.
Emma was having a horrible time keeping her formula down, and wasn't taking to the bottle at all, so the GI team came in to discuss a g-button. After Emma's NG tube tied itself into a knot in her stomach two nights in a row, I capitulated to the surgery. Reluctantly. Tearfully. I didn't want more holes poked in her. I spilled it all out to Jurgen that night on the phone, just happy to have someone in which to confide without having to worry about their feelings. He took the day off from work to make the 3 hour drive to sit with me through a surgery wait that would only be about 2 hours. What a guy.
24 hours before the surgery, they ran a pH test on the baby to make sure she didn't have severe acid reflux. I was left with a little box connected to a probe that was fed up my daughter's nose and down er throat. Press button 1 for a cough, button 2 for a spit up. The knife-and-fork button when she's feeding, the sit-up/lie-down button when she was sitting up or lying down, the sleep/awake button when she was asleep or awake. Make note of all her meds and when she gets them, exactly how much formula she gets, and if she throws up, catch it in this little tub so we can measure the amounts. Jurgen the Amazing took a 5 hour button-pushing watch so I could get some sleep. I nicknamed him Jackpot.
December 31st, Emma's G-button was put in with no complications. 24 hours on IV fluids, 48 hours of slow-testing formula, and then... the magic words! Take Her Home! I called my mother. Emma might make it home for my grandfather's 85th birthday. Pray pray pray, and cross your fingers.
January 5th, my parents came for us. Everything was packed up. I'd checked and rechecked every single nook and cranny of the room to make sure I had everything. Mother and Dad arrived at 3pm, running half an hour ahead of an ice storm. I was nervous, breathing fast, jittery. Dad and I went outside and braved the frozen wind for a cigarette. My last one. I'd started again when we came to Dallas, but had sworn to quit as soon as Emma went outside for the first time. Our things were packed into a wagon. I put Emma's fluffy pink hat on her head and tied the strings under her chin. My hands shook as I pulled all the leads off her chest for the last time. I picked up my bundle of pink, powdery goodness and headed out the door.
I almost ran to the elevator. I felt like I was doing something wrong. At any moment I would hear someone shout, "Stop! Where are you going with that kid?!" But no one did. We made it to the elevator. Through what felt like miles of hallway. Into another elevator. Over the skybridge to the parking garage. My hand hesitated a moment on the door. I started to glance back over my shoulder, but for fear of turning to a pillar of salt, I stopped and barreled through the door.
Sitting in the back seat, my fingers clutched in my sleeping daughter's kung-fu grip, I laid my head on her lap and let the tears go.
She's 8 months old on Thursday.
User Reviews
Submitted by Merlina (user info) at 2009-05-28 05:16:17 EDT (#)
Ranking: 2
Submitted by mystiamoon (user info) at 2009-05-28 04:55:54 EDT (#)
Ranking: -2
THIS IS COOKIELASS
THATS HER DAUGHTER.
LOOK AT HER MYSPACE LINK ON MY LAST POST.
~~~
it doesn't matter..
Submitted by mystiamoon (user info) at 2009-05-28 04:55:54 EDT (#)
Ranking: -2
THIS IS COOKIELASS
THATS HER DAUGHTER.
LOOK AT HER MYSPACE LINK ON MY LAST POST.
Submitted by RoadSong (user info) at 2009-05-28 00:58:15 EDT (#)
Ranking: 2
Submitted by SmalltownSally (user info) at 2009-05-19 23:48:43 PDT (#)
Ranking: 0
@RoadSong - Sorry it's so long between the posts. I probably could have finished it all in the span of a week, but Tiny Tots keeps me on my toes, and I don't generally have much time for being online. I haven't really responded to comments because it wasn't the spirit in which I started posting. I just needed to get it all out. Plus, this being the place that it is, there were bound to be haters. And there were. So, while everyone is entitled to their opinion, and if it clashes with mine, I try to explain my side, you can never change anyone's mind. And I didn't want to divert my purpose by trying to explain myself. It's not what I came here for, and I'm still deciding if I feel the need to stick around. But I appreciate the support I've gotten from total strangers. It was unexpected and probably undeserved, but appreciated.
~~~~~~~~~~~~~~
Yes, this story has always seemed like a journal you wrote for yourself. What a long hard journey you and she endured. Perhaps there will be small photo posts on her birthdays?
There are some here who came to love your baby as we read of her fight to live. I am one of them.
Submitted by Dimenhydrinate (user info) at 2009-05-23 16:19:35 EDT (#)
Ranking: 0
I fucking hate babies.
Submitted by Little_Sally (user info) at 2009-05-23 04:55:39 EDT (#)
Ranking: 0
ummmmm I'm sorry ubersite only has room for ONE (1) Sally, and I was here first. If you could change your username to "smalltowntommy" or "littlevillagevictor" or even "guythatpostsabunchofthingsthatidon'treadmissy" it would be much appreciated.
k thanks bye
Submitted by BLITZKREIG_BOB (user info) at 2009-05-21 09:00:28 EDT (#)
Ranking: 2
No Comment
Submitted by monkeyswithguns (user info) at 2009-05-21 08:46:40 EDT (#)
Ranking: 2
I have a gay cat, and I shot an opossum last night because it was trying to hump him. Also, I didn't read this.
Submitted by osmosianist (user info) at 2009-05-20 22:40:21 EDT (#)
Ranking: -2
Not very good.
Submitted by bustedcompass (user info) at 2009-05-20 19:45:41 EDT (#)
Ranking: 2
No Comment
Submitted by TheStitch (user info) at 2009-05-20 18:12:53 EDT (#)
Ranking: 2
Submitted by SmalltownSally (user info) at 2009-05-20 02:48:43 EDT (#)
Ranking: 0
@Emission - I thought it was pretty clear that this was the end of the story. I mean, technically there's more, because she's fixed and healthy now, but this part, the hard part, was all I felt the need to get out.
_____________________________________________________________________________________________
She's fixed and healthy - that's all I was hoping to hear. Though I lurk on Uber all the time, the first thing I looked for every day was to see the latest on your saga. Glad to see it was a happy ending; she looks great.
Submitted by HurtByTheSun (user info) at 2009-05-20 13:28:45 EDT (#)
Ranking: 0
FJ is a homo, pass it on.
Submitted by SmalltownSally (user info) at 2009-05-20 02:48:43 EDT (#)
Ranking: 0
@Emission - I thought it was pretty clear that this was the end of the story. I mean, technically there's more, because she's fixed and healthy now, but this part, the hard part, was all I felt the need to get out.
@TuTs - I couldn't compare strife... anytime you have an actual fear for your child's life it's horrifying. Just because mine lasted a little longer doesn't invalidate what you went through. Good on you for not backing down just because the doctors thought you were nuts. Sometimes, a parent is the only thing standing between a kid and death.
@Pioneer - Hardly. Yesterday, I was playing with her on the bed and cracked her in the face with a rattle. She looked at me like I was a total tool right before she burst into heartbreaking cries. But thanks for the sentiment... every mother loves to think she's the best mom ever.
@RoadSong - Sorry it's so long between the posts. I probably could have finished it all in the span of a week, but Tiny Tots keeps me on my toes, and I don't generally have much time for being online. I haven't really responded to comments because it wasn't the spirit in which I started posting. I just needed to get it all out. Plus, this being the place that it is, there were bound to be haters. And there were. So, while everyone is entitled to their opinion, and if it clashes with mine, I try to explain my side, you can never change anyone's mind. And I didn't want to divert my purpose by trying to explain myself. It's not what I came here for, and I'm still deciding if I feel the need to stick around. But I appreciate the support I've gotten from total strangers. It was unexpected and probably undeserved, but appreciated.
Submitted by RoadSong (user info) at 2009-05-19 23:51:25 EDT (#)
Ranking: 2
I have been waiting, waiting, and WAITING to hear from you again.
A couple of days ago I thought to make a comment on a previous post of yours to ask about you and the baby...
She is beautiful, thank you for sharing the story and the photos.
I have noticed that you do not respond to comments made on your posts.
May I ask why?
Blessings to you and yours.
Submitted by HateMudkips (user info) at 2009-05-19 21:36:07 EDT (#)
Ranking: 2
:)
Submitted by Lib (user info) at 2009-05-19 19:33:25 EDT (#)
Ranking: 2
really happy to here this all turned out well for you and your little Emma.
Submitted by inion_de_trua (user info) at 2009-05-19 17:25:17 EDT (#)
Ranking: 2
No Comment
Submitted by PioneerBill (user info) at 2009-05-19 15:55:24 EDT (#)
Ranking: 2
Emma has the best Mother any child could be blessed with!
Good Bless both of you.
Submitted by mystiamoon (user info) at 2009-05-19 14:33:14 EDT (#)
Ranking: 2
No Comment
Submitted by scourge (user info) at 2009-05-19 13:22:21 EDT (#)
Ranking: 2
i like babies.
Submitted by SgtHartman (user info) at 2009-05-19 08:24:17 EDT (#)
Ranking: 2
AWWWWWWWWWWWWWWW
Submitted by TuTs (user info) at 2009-05-19 08:21:40 EDT (#)
Ranking: 2
Glad your bub is home and I hope she is well.
When my little girl was one she caught pneumonia and we had to spend a fornight in intensive care because she needed to be intubated, because both her lungs were affected. Doctors suck. When she first got sick and was breathing funny I took her to the GP who said she was fine and sent me home. I still knew something was wrong so I took her to the hospital emergency room, they gave me antibiotics and sent me home. That night laying in my bed her lips were blue, she was gasping and hadn't had a drink for two days. So I took her back to the hospital and refused to leave until somebody did something.
A different and nicer Doctor to the first one came, new immediately that something was wrong, put a fluid drip in her hand and ordered an x-ray. By 8.00 the next morning they realized I wasn't just some stupid hysterical (which they always think you are because they are the Doctor gods and you are an idiot woman) and sent her via ambulance up to the childrens hospital. It was two weeks before christmas and she had just learnt to walk. They removed the breathing tube after a week and had her with the nasal oxygen tubes. They let us out a day before Christmas and removed her IV and weaned her off the oxygen over three days, but warned that she might have to come back if the oral antibiotics stopped working (in the hospital she was on IV ones). She lost so much weight and couldn't walk anymore.
It sucks when babies get sick and it's not fair. This story reminded me off our own tiny brush with the hospital system and made me so thankful that what I experienced was trivial compared to what some parents go through. Again I'm glad your child got well and I hope she is still healthy.
Submitted by EmissionImpossible (user info) at 2009-05-19 06:21:01 EDT (#)
Ranking: 1
its beautiful and all but when does it end?
Submitted by Desz (user info) at 2009-05-19 05:14:16 EDT (#)
Ranking: 2
no Dr.House?
no dead baby jokes?
Not what i expected but still a very nice tale
Submitted by littledan (user info) at 2009-05-19 05:00:26 EDT (#)
Ranking: 2
I'm glad to hear that she's home, and judging from the pictures, she has been for a little while.
Congratulations.
Submitted by F.J.Bell (user info) at 2009-05-19 04:25:46 EDT (#)
Ranking: 2
Babies!