Belle and the Buglet: January 2011

I've been writing and rewriting this post for a week now. It's so hard to read what I've written and make sense of some of it (like the parts where I was sobbing and typing -- those drafts are amusing). I'm putting it all here though - the good, bad and ugly... just a little more cohesively written.

It started off with relief on Monday night (the 27th) that Norah was going to have her surgery. My baby was going to be "fixed" before something could kill her intestine and then, maybe, we could relax a little with every feeding, cry and poop. She had a bath and was cuddly and ate well, but didn't sleep as well as she typically does. A little before 4, she was sleeping on me and I was watching her - I couldn't fall asleep for that last hour before the alarm was going to go off.

I was scared. I didn't feel relief anymore, just fear.
What was going to happen to my baby? What was she going to think when she woke up in the PACU and I wasn't there? What if something went wrong? What if she doesn't need this surgery?
What if she doesn't need the surgery, was (and is) the big one. 70% of kids intestine twist within the first month of life, 90% within the first year... that leaves 10% unaccounted for. 10% that doesn't twist. 10%. I was told she had a less than 10% chance of making it to term - forget about being born, just making it to term. Norah is our miracle baby. She defied odds and continues to do so - I see big things from that little girl, and she's already proving me right by teaching us all so much everyday.
What if I was putting her through all the pain for nothing? I'd done everything cautiously when it comes to Norah, why should this be any different? She had to endure the physical pain this time, not me. THAT'S what made it different.

Surgery went well, a little long b/c anesthesia had a hard time getting the iv's in, but she did beautifully through it.

Surgery sucks y'all.

As an adult, you can weigh the pros and cons of a procedure/treatment and understand why you're in pain and ask for medications and speak up if those medications don't work.
As a baby, you rely on your parent to notice your pain level and keep you medicated and comfortable. They start you off on the lowest, possibly therapeutic dose of pain medications and it's up to Mom & Dad to decide if you're in pain and need more.
That sucks. You don't want to overdose your kid, but you don't want them to feel any pain either and how do you know what's hurting to make her cry like that?

In the PACU, they were trying to get her to take pedialyte, which she wanted no part of. She was really groggy, but seemed ok. She was trying to focus on us when we talked to her, but she was really out of it.

PACU

A little later, after she settled in and the anesthesia wore off up in the PICU, Norah was in agony.

If the blanket on the warmer was touched, she'd cry out in pain. Mostly, she just laid there, moaning in pain. She looked and sounded as though she was dying.
It was horrible.
It was the most horrific sounds I've ever heard in my life and I caused them. I hate myself, and will probably never forgive myself, for her having that surgery and being in that kind of pain. I've never wanted out of this life more than I did that night. I wanted to hold her and make her better, but touching her made her hurt. Everything, even someone walking in and around her room moving the air, made her hurt. What kind of mother puts her child through that electively? I stood over her warmer, sobbing and therefore hurting her even more, just wishing there was something that I could do. Anything. I would have done anything if I thought it would make her comfortable.

The smallest (most minuscule actually) good part of babies being given the lowest possibly therapeutic dose of pain meds is that it can be increased at anytime. While I sobbed, a nurse asked me what I thought the problem was and I told her. My baby hurts and I can't fix it. She's in so much pain and I caused it. I just want her to not be in pain.
Within a couple minutes, she'd had another dose of morphine and it was upped and ordered for every hour, and the anesthesia team was back at her bedside, increasing her epidural. There was some relief. Not tons, but she wasn't in so much pain and could tolerate people moving around the room and, to a degree, touching her again.

I got to hold her for almost an hour.

Her comfort was short lived though.

Her oxygen levels kept plummeting. She was still in pain, but it was partially masked by the morphine. Her belly was HUGELY distended (45cm around - by the time she was discharged, it was more normal at just under 38cm) and an x-ray was ordered.
Seriously, as lame as it is, the x-ray sent me over the edge. I cried, big ugly tears and couldn't calm myself until it was over. She wasn't even touched b/c the x-ray blank thingy went under her warmer and not under her directly. I had to leave the room. The room with glass walls. I had to step outside the large open door of the room with glass walls. It was just one more thing I couldn't be beside her for and I lost it.

The x-ray showed air in her belly so an ng tube was placed to suction some of it out. I had no problems with the ng tube going into my child, but the x-ray crushed me. WTF is wrong with me?!? I was at her feet when it was placed and cradling her head before they started the suction. A LOT of air and bile came up, and her belly went down 3cm in a matter of seconds. She was visibly more comfortable.

getting settled

pulse oximeter

not feeling so hot

oxygen and ng tubes

We were both able to get a little sleep, but 6am surgical rounds were right on time.

Her surgeon (Dr. H.) thought that the epidural was doing more harm than good and should be removed. The downside of that was that she'd be relying on morphine (and tylenol) to control the pain, and that can slow the intestines from waking up after surgery. She still had the ng tube and that wasn't going to be removed until after she pooped and proved that her bowel was working for more than making gas. She'd have bowel sounds one minute and then her belly would go silent. I heard and felt her have gas, the nurses did too, but then...nothing.

Once her epidural and catheter were removed, she was like a new baby. It became much easier to manage her pain and she would go upwards of 6hrs between morphine doses as long as she got tylenol every 4.

Nick brought Jordan up to visit and Norah was happy to see her sister. I'll never forget her trying to open her eyes, and when they would open, focus on Belly, even for just a second, while she talked to her. It was amazing.

She had a great day, but again, her night was tough. She really, really had to poop. She managed a tiny, little, rock hard poop pellet but that was it. She got a lot of morphine over night to keep her comfortable, but that was a double edged sword b/c it slowed down her bowel.

desperate to stay awake

yeah, we moved in.

6am Thursday morning surgical rounds were quick. They ordered a suppository to help her out if/when that worked, she could lose the ng tube and we'd discuss starting pedialyte at evening rounds. AWESOME!

She had a suppository that really didn't help. She pooped over 2 hrs after she got it, and she pooped it out, whole - that thing didn't melt at all. She pooped twice - both HUGE. **Norah, I love you and when you're 10 I will understand why you hate me b/c I talked about your poop on the interwebz, I promise** She was mostly comfortable, and we stayed on top of the tylenol so that she'd get it every 4-6 hrs and morphine as needed.

The surgical attending ordered an echocardiogram b/c she wanted to make sure there was a reason for all of Norah's desats. The echo looked about the same as it did on 12/15 and we'll discuss what to do about it at her next cardi appointment on the 12th.

She was moved to a step-down room in the PICU and at 9pm, she had some pedialyte. My girl was doing so much better, still having pain, but it was (mostly) easily manageable. Another night with more morphine than I'd have hoped, but if she really didn't need it, she'd be in a general peds room soon.

waiting patiently for the ng tube to go

step down room

ALERT!

heaven

Norah was cleared to try formula at morning rounds on Friday and would be going to the general peds floor that afternoon. We were thrilled! She'd had her last dose of morphine at 4am and wouldn't be allowed to have it on the floor. Girly missed her formula! She was so happy to have a bottle! Friday was pretty uneventful otherwise. She moved into her new room around 3 and we just hung out.

After being so good about not pulling out any of her tubes or ivs (ok, other than moving her cannula every chance she got), she yanked out the iv in her right hand. Blood everywhere. I felt so bad, I didn't know why she was so upset until there was blood running down my hand.

She and I rang in the new year cuddled on the chair bed and watching some fireworks out the window.