On Friday night/Saturday, doctors confirmed Ellie's heart condition, confirmed her double bubble (stomach blockage), and also did all of the initial intake. Surgery was late on Saturday afternoon. Although my mom was at the airport already, I had several friends come over on Saturday, and my dear friend Sherri stayed with me throughout the surgery until Ellie was in recovery. We didn't know what time Ellie would be in surgery, but I am eternally grateful for Sherri's presence that day and chalk it up to divine intervention on the timing.
Along with correcting the duodenal atresia, Ellie also had a malrotation of the intestines. (OK, so I think that's what it's called. Her intestines are in the wrong spot.) I guess this can happen, but most people who have the condition don't know until they have an "acute event." I'm not sure how acute "acute" is, but Ellie will not have an event, because the surgeons did something to make her backward or out of place intestines work. And if you want the real medical version of that, sorry, you have to ask someone who wasn't on a combination of painkillers and no sleep when she listened to the surgical report. Anyway, the surgery was a success. As for my surgery and recovery, I was released from the hospital on Sunday, around 48 hours after delivering Ellie. If anyone is looking for an OB recommendation, let me know, I will be thrilled to recommend my doctors. They kept my concerns about Ellie in mind and provided healing time needed, but also got me out quickly.
Ellie is recovering nicely, but there have been bumps along the road. The PICC line migrated a bit, causing an arrhythmia that took most of Wednesday to identify, locate the cause of, and correct. The fix was easy, but Ellie had a rough day with being poked and prodded. She is not yet eating, and is fed via IV fluids and lipids until her GI function returns (or begins) following the surgery. She also has met with some huge successes. I never thought I'd care so much about poop, but first poop is a big sign of progress with these surgeries. We got poop on Tuesday, despite the fact that we knew it could take a week or more. We are learning to be patient, because this was great progress, but doesn't mean she can dive right in and chow down on BBQ chicken just yet. She also was off the ventilator before I even arrived at Children's on Sunday.
Our little girl is fighting her way through recovery. The internet at the hospital isn't great, so I can only update from home. Yesterday I was at the hospital from 7 am until 10 pm, so today I have a ride and will arrive closer to 10 am and stay later. Ellie has entertained several visitors thus far, and her daddy and I are so grateful for them, for the friends bringing us dinner and groceries, and for the emails, facebooks, and words of encouragement.
(See that line in her nose? See that hand near the line? The line won't hurt if she pulls it out, but it'll hurt a lot to get back in! Careful, Ellie!) |
I am loving reading Ellie's story, Megan! What an amazing little girl, and of course, amazing parents!
ReplyDeleteHi Megan. I've been trying to find stories of NICU experiencesbloh duodenal atresia and I've come across Ellie's story twice. It's so great to see all that she's overcome.
ReplyDeleteWe were diagnosed at 26 weeks with the double bubble in utero and opted not to do the amnio but we did do the MaterniT21. Those results came back negative and there aren't any other visible markers for DS so we think it's just the blockage we're dealing with.
I'd like to hear more about the surgery and everything surrounding the blockage...did you have polyhydramnios? Etc...do you know any other people with stories similar to mine?
If you'd like to contact me, my email is krystlebailey68@hotmail.com. Thanks for your time.