So having a baby at home? Yeah, it's really hard work and thus I have been remiss in her daily updates. Here's what you missed on GLEE. Here's what has happened since we've been home. From here on out I'll try to update several times a week. My plan is to document her first year here and print it out in book form as her baby book.
(Click here to see daily updates from her birth through homecoming)
On April 10 we got the call that we would be rooming in at the hospital the next day. They had told us to expect to stay overnight for a few days so we packed a huge bag and settled in for hours and hours of training on her equipment. She came home with a heart/apnea monitor, a feeding tube and pump and a suction machine for us to suction out her nose/mouth when she has large amounts of vomiting so that she doesn't aspirate.
And then the morning of April 12 they said we could take her home! We were shocked, we thought we'd be there longer. Here is the post from Homecoming Day.
Before we left the hospital they decided to put in a month long feeding tube vs a week long one. The one they inserted was much larger than the one she had in and caused her what is called "tube trauma"
Here is where I tell you everything that happened after we came home and then you're all like "so that's why she barely blogged for a month."
For the first 48 hours that she was home she choked constantly, all day long and set off her monitors over and over. I felt like this was due to the size of the tube. I asked for it to be taken out and given a 6.5 FR tube instead. We were assigned home nursing so our nurse came out and removed the tube and put in a new one. The larger tube had rubbed a raw spot in Scarlette's nasal passage and throat and she was bleeding. The doctor instructed us to put the new tube in and assured us that she would heal fine around the feeding tube.
For the next week she was such a miserable baby. Every time the tube dispensed food (every 6 seconds or so) it would move in her throat, rub the raw spot and cause her to gag and choke. We stayed up all night long with her because she was vomitting and gagging constantly. During the daytime she was gagging while taking her bottle and setting off her alarms.
I felt really strongly as though the tube needed to be removed to allow her healing time because she CAN drink from a bottle, the feeding tube is only to allow for weight gain because she is very underweight and because she is on Elecare she doesn't get the amount of nutrients she needs. I felt as though we should remove the tube and reinsert it after she had healed. This resulted in many calls to the specialist 🙂 When tube-change day came, I could not get her feeding tube back in. She was so swollen. Jeff and I decided to leave it out. She was a totally different baby without it. At her next appt a few days later, the specialist ordered it put back in. I asked our home nurse to do it since I wasn't able and she couldn't get it in either. We waited for the swelling to go down and then our nurse re-inserted the tube per the dr's orders.
For the next few days any time I pulled her residuals or she spit up, there was dried blood in it. I continuously called the specialist and kept being told by the nurse that she would heal around it. She kept up the same pattern as before, she was so sick. I called my NICU doctor who agreed with me that Scarlette would be okay without the tube for some healing time. So Jeff and I made the executive decision to go against doctor's orders and pull the tube (hence the note about me in the chart, lol) We assured them we would carefully monitor her weight and feedings (which I'd been doing obessively anyhow) but honestly? She was vomiting every time she ate with the tube in, which seemed counter productive to her weight gain. They agreed to a week long trial without it as long as I agreed to wake her up to eat every 3 hours at night.
Scarlette's done AMAZING without it. She has gained so much weight and we've seen a drastic reduction in her amount of vomiting. AND she sleeps at night in between feedings rather than choking/gagging/crying all night long. She had to gain an ounce per day to be able to stay off the feeding tube.
When we went back to visit they insisted she was 3.5 ounces short. But they were counting from the last visit, when she'd been on the feeding tube and was vomiting often. I gave them our chart from the days she'd been OFF the feeding tube and it showed that she had gained an ounce per day or more for every day since the tube was removed. So we got them to agree to leave the tube out as long as her weight gain continues in that fashion. YAY!
I know that I was being incredibly pushy and insistent but I felt like they weren't hearing me. They kept telling me not to try to rush her off the feeding tube and I kept telling them that I didn't care if she was on a feeding tube. My issue was not that she was on a feeding tube. My issue was that she needed a break to heal from the tube trauma. She'd been on a feeding tube for months with no issues and I have no problem putting it back in if need be, but it seemed cruel to me to not give her time to heal. I think we finally got on the same page!
We're finally starting to get into a rythym around here now- the first few weeks were just awful because she was so sick all day long and were getting no sleep at all. I had to sit holding her upright all night long so she wouldn't aspirate and even with my mom coming to help we still woke up every time the alarm went off.
And that's why I rarely wrote 🙂 I'm going to attempt to keep up with updating here though. Plus, she's so stinkin cute. She's laying next to me kicking her hanging rattle toy on her play mat and cooing every time she gets it.
