So yeah, we’re home. Forgot to post. I knew I was forgetting something. Sorry, everyone! But yes, home. Doing well. Evie is thrilled to be back in her space again (as are the rest of us). She was actually discharged over the weekend, but we had an appointment on Monday, so we hung around town and had some (very much needed) family time.
Fishing, ice cream, and puppets and dancing (and taking a bow) at Barnes and Noble. So much normal!
We also stopped at the fire station close to our hotel to see if they ever gave tours. The girls were thoroughly spoiled.
Evie kept signing ‘sit’ and pointing to the fire truck.
So now we just watch her, monitor her hemoglobin if she starts bleeding again, and do blood transfusions if needed. And hopefully stay home for a good long time. It’s been such an exhausting long year. Her first intussusception was in July and it’s been the most intense stress I’ve ever experienced since then. We’re all ready for some quiet and our normal level of stress.
Thank you again for all the prayers. And hopefully the blog is just a bit quiet for a while as we have a (relatively) boring, uneventful summer.
First and foremost, I want to thank everyone who sent cards and gifts for our special birthday girl. I am overwhelmed by the sheer number of people who took the time to make her day enjoyable. Friday morning was a bit rough and I thought we’d just go downhill from there, but then the cards and balloons starting arriving and we were able to take her off the morphine drip, she was so happy. It was the perfect distraction the day after surgery.
We’re still waiting for her bowels to wake up, but she’s comfortable and in good spirits. We even walked around the unit a bit and she showed off her jumping skills for all the staff. EVERYONE seems to know her now.
Alright, on to the pictures! I haven’t even gotten all of the cards opened and hung yet! It’s just crazy!
Can you believe it???? It’s not exactly the ideal setting for her 4th birthday, but she’s still with us and growing and thriving and we’re thrilled. Hopefully she’s not in too much pain today and we can have a little fun.
I had to make another video, of course, but I did it last week since I wasn’t sure if I’d have time with everything else going on. I think these two songs perfectly capture Evie in so many ways. Enjoy!
Here are posts from her first three birthdays if you want to catch up.
This Day Last Year
Evie is Two!
Three Years of Happiness
Well, I think we got fairly good news. Evie’s small intestine looked pretty good. There was a small spot at the part that we worked on last time that looked like it may have been bleeding, but it was pretty mild. That can sometimes happen with a bowel resection, so they weren’t too keen on doing yet another bowel resection. Then it could just happen again AND she’d have lost more of her small intestine. So they decided to just leave it.
What does this mean for her? Well, it means we’ll continue monitoring her. We’ll watch for black stools, check her hemoglobin, and do blood transfusions as needed. If the bleeds stop on their own, we’ll just continue to wait and let it heal on its own. If a bleed does not stop or is more severe, then we’ll probably need to go back in and take that section out. Bowel resections can take about two years to fully heal, so hopefully if we give it time, it will get better. This last bleed was certainly much slower which is encouraging.
It’s not ideal. We’d all love a quick fix. But this is Evie. Things just are rarely that simple. The good/great news is that since that bowel resection in March, Evie’s done better than she’s ever done with feedings and growth. Even some of her heart rate issues seem to have improved (though no one is quite sure why). So what we did then was a GOOD thing and it made a big difference for her. It makes me think that this may have been a birth defect that’s been causing issues all along and I’m so so glad we found it.
Evie has a rough recovery ahead of her. The push endoscopy that was done today is significantly more traumatic on the bowels than the resection we did in March. It took nearly two weeks for her bowel to reawaken that time, so it could be a long stay again. She does have quite a bit more weight reserves this time, though, so it’s always possible that healing will be quicker. Just never know with this girl. They have the pain management team handling her case this time to make sure she’s kept comfortable which is encouraging.
Please just pray that she heals quickly, isn’t in too much pain, and that the bleeds DO get better on their own. Thank you all for your prayers and support. This has been such a long hard road for Evie and our family, but I think we feel encouraged by today’s discoveries.
They just took her back. PICC will be placed first and then surgery. Will likely be around 4 hours.
The OR is delayed today so we’re just waiting around, trying to keep the girls entertained until they come get Evie for surgery.
Surgery is scheduled for 11:20 today for about 4 hours. Please pray that we find the source of bleeding, that it doesn’t require taking out too much more of her intestines, and that no damage is done during the surgery itself (which is always a risk when you’re moving things around in there). It’s going to be a long day.
I apologize for not updating more, but we’ve mostly just been monitoring Evie. Last week however her hemoglobin dropped to 9.0 (from 10.0 a few days before) so we were squeezed in to see hematology locally to decide what to do. Since we want her hemoglobin levels nice and high before surgery, it was decided to do a blood transfusion to top her off. We were able to just do it at the infusion center instead of being admitted which was wonderful. Her hemoglobin is great at 12.7 now, so it did the job.
Next step is another exploratory surgery in Cincinnati this coming Thursday, the 7th. The day before her birthday. Boo. It is what it is, though.
Please just pray for safe travels and that we finally locate the bleed and fix it once and for all! And pray that Evie recovers well and her bowels don’t take so long to wake up. We’ve packed as much weight on her as we can, but it will still be hard on her not being able to get food OR IV lipids until her bowel wakes up.