April 17, 2016

The tough update

It's a little late coming, but I wanted to do a quick update about our last visit to U of M since so many have asked us about it. I'm constantly amazed by how many people still care about our family and Meili's progress. We've been at this for over three years now...three years of appointments, therapies and searching for answers. At times it feels like drudgery for us, but the emails, messages and personal interactions remind us that we still have people in our corner.

We had a full day of appointments, beginning at 9am. On the list for the day was a re-evaluation with her pediatric GI, an appointment with the adoption medicine doctor, a follow-up with the child psychologist and then a replacement of her feeding tube (apparently, after several months they are typically replaced anyway, because despite routine cleaning, build-up occurs and they begin to get clogged more often).

Looking a little chunkier


The good news is that Meili gained about 5 pounds during the three months she had been using the feeding tube. Considering we actually were only able to use it about two of those three months because of our previous feeding tube fiascos, we were pretty pleased with that and so was our doctor. On a more practical note, we are happy that her underwear isn't baggy and her pants are finally staying up. It sure makes getting dressed and out the door during the crazy morning routine a lot easier!

Checking to see if the J-tube was still properly placed. We thought it had likely shifted into her stomach, and if that was the case, planned to request a G-tube instead since insertion of G-tubes is typically easier. It hadn't, so we kept the J-tube.
So for now, the plan is to continue using the tube for another three months. If her progress continues at the current rate, we will begin to back the feeds down after our July appointment and see if she will start consuming enough orally to keep up with the growth.

THE OTHER APPOINTMENTS (and the hard part):

We've mentioned before that we are amazed with the doctors at U of M. They work together and collaborate like nothing else we've ever seen. It's so refreshing to see a team of doctors and know that each one you talk to knows exactly what the last one you saw said and did. We trust this team because of their knowledge, expertise and experience, specifically with internationally adopted children. They understand the trajectory you can expect for these kids from hard places. They see it and live it day in and day out. They get it. After four months of working with them, we are finally beginning to get a clearer understanding of Meili's history, traumatic past and her future. We needed them to be straight with us.
And they were.

We were told, that we can expect life-long struggles for our little girl.

In all honesty, we knew that. But it is still so hard to hear someone say it.

Heartbreaking, really.

We've gone through a range of emotions; both of us in different ways. Maybe eventually we'll share some of them. Maybe more about it all. This is why this post took so long to write. How much do you tell everyone...and when?

We wanted to share enough, so that those of you who are in our corner can continue to pray for us, because in spite of all of this, we still believe that our God is able to do immeasurably more than all we can ask or imagine. Please keep praying, not just for us, but for all adoptive families. We truly need and appreciate each petition more than you can know.

January 15, 2016

Third time's a charm??

Apparently, we are either cursed by the feeding-tube fairy or we just have really bad luck. This week was pretty rough on us and little Meili. After a very traumatic placement of the second feeding tube last week, we have had nothing but trouble. It worked well for about 24 hours before we started getting "line clogged" errors from the pump. A good nurse-friend came and helped us get it unclogged and we thought we were in the clear, but it only got worse from there. We began to think it may be kinked inside her stomach, since we really couldn't find any reason for such frequent clogging. By Wednesday night it was error-ing every 15 minutes and since we only run feeds at night, this was making for some very frustrating, sleep-deprived nights for us. 

We went in on Thursday morning to have an x-ray and discovered that, as we had suspected, the tube was coiled in her stomach again and it did appear to have a place where it may have kinked as well. The tube that was placed locally was a completely different kind of tube than U of M had placed, and since the U of M tube worked well (before it got pulled), and because of our horrible experience here,  Miss Meili is back at U of M today getting her third tube placed.

Prayers appreciated that this will be her LAST tube and that it will function correctly and we can get this weight-gain thing back on track!!

January 10, 2016

30 pounds and counting....

It's been a little while since we left U of M, but since several people have asked, I wanted to do a quick update. I meant to do it just a day or two after we were discharged, but life happened and now we're 10 days out. Since then we've actually had a few interesting things happen, so I guess I can just cover them all now.

By December 31, we were at full feeds at U of M and running them only 12 hours/day, which was their goal for when we went home. We had expected them to do additional contrast testing, and even though we and our adoption doctor wanted to have them done, the GI doctor didn't think it was necessary. She was concerned it wouldn't show anything new since we'd only just started feeds, and she didn't want Meili to be exposed to any extra radiation. We admitted that was a valid point. Once we knew there wouldn't be any testing and it was the last day of the year, we pushed to be discharged to avoid spending our entire health insurance deductible on the first day of 2016.

Meili was tired of being in the hospital.

And she was eating well by mouth.

She loved the play room, and the visiting therapy dog, but we were ready to go.

We were discharged on the 31st, and made it home just in time to ring in the new year with some friends. We were exhausted, but it was great to talk to someone besides doctors and nurses. The feeding tube came home with us and will be in for a minimum of 4-6 weeks. We run it 12 hours a day, usually from about 7pm - 7am. 

We've been having Meili sleep in our room so we can hear the pump if there are any issues, and we've learned the hard way what happens when you fill a small child with lots of fluid at night. Between bathroom trips (which we have to help with since she can't carry all the gear), pump alarms and Meili being a very LOUD sleeper, it's almost like having a newborn again!

And I'm still cringing every time I put the formula into the feeding bag. Because of this whole process, I've learned a lot about formula and NJ tubes, including the lack of availability of high-quality nourishing options that don't contain garbage ingredients. Meili's tube is an NJ (Nasal-Jejunum), and unfortunately it would be very difficult to feed a blenderized real-food diet through it, so we're pretty much stuck with the pre-made stuff. Despite my issues with it, adding those extra calories every day has proved to help - as of last Monday she was up almost 2 pounds!

Tomorrow we'll check the gains from week-two, although as far as feeding goes, this certainly wasn't a perfect week for us. We had a bit of an "issue" on Wednesday that resulted in Meili's tube getting pulled out about 6 inches. Jon was right there and instinctively stuck it back in, but to no avail. We did an x-ray and determined that it had been dislodged from the jejunum and was coiled in her stomach.

Not good.

Both our primary care doc here and our doc at U of M advised that if they couldn't maneuver it back into place (which was unlikely) it would need to be pulled and new one inserted, which would mean they would have to put her under again.

So back to the hospital we went, not to U of M but down to Sioux Falls. I don't even know how to describe our experience here, so in the interest of not saying something I'll regret, I'll try to sum it up briefly. The tube knotted in her stomach during the "maneuver" so they brought in two interventional doctors who knew nothing about her past, her history, or really anything that was going on. 

This guy here, is my hero for helping restrain her while she screamed for 90 minutes, while multiple tubes were pulled and inserted over and over again, with no medication, and without putting her under.

I couldn't handle it and hand to step away. It was by far one of our toughest parenting days, and certainly our most difficult medical scenario. We were reminded again why we chose to take our daughter to U of M.

Thankfully, some wonderful nurses were there and felt so bad after the whole ordeal they let Meili go to big prize closet. She's now the proud owner of a lovely American Girl named Grace.

She was starving, having not eaten for 8+ hours and asked for noodles when we were done. Jon commented she could have asked for a car and he would have gotten it for her for all she'd just gone through.

A few noodles did make everything a little better. 

So we're back to "normal" now, trying to get some extra calories in this cutie. Hopefully despite our setback this week, we'll see some gains. In the mean time, we are trying to be very, very careful to make sure that tube stays exactly where it's supposed to!