Progress

We had a great appointment this morning with Claire's general surgeon and took some big steps forward.

She changed our rectal irrigations to only as needed and our dilations to every other day!! We have been doing both basically every day (once or twice per day) since the day she was born so we are really excited about this. These have always been hard on my Mama heart.

We also talked quite a bit about what she expects for Claire's long-term bowel management. I've been scared to ask (because I didn't think I wanted to know the answer!) but I'm glad that I did, she is hopeful that Claire will do really well with a fairly minimal bowel regimen although she did say that her and I will be lifelong friends so it will be a process and I'm sure I still have a lot to learn.

We also talked G-tube, the great news is .... she still thinks that Claire might not need it!!!! AND we got our wish, she called Claire's GI doc who was at another clinic today and ... no more NJ as of this morning!! Claire is back to an NG which means that her feeding tube is in her stomach. She hasn't had anything in her stomach for about a month and a half now so we are really excited about this, sweet thing gets to "eat" and feel full again <3. We are still using the pump as it will take time for Claire's stomach to expand (it's really small now from being empty for so long) and the pump allows the same volume to go in over a longer period of time, once her stomach has had some time to adjust, we will try bolus feeds and then, if she tolerates those well, we can start trying to feed her by mouth again! We are letting her set the pace and seeing how she does at each step.

No more NJ means that we don't have to keep her restrained anymore because if the NG gets pulled out (which I'm sure it will!), I can put it back in at home. No more $75 trips to the ER (we've had 3 just for replacing the NJ and one was on Levi's birthday, poor buddy). It will be great for her motor development to not have to keep her hands bundled up and again, it's progress! It means that she's making steps toward being able to take food by mouth again.

The only big difference is that we can't run an NG 24 hours/day like we have been doing with the NJ so Claire will be at a faster rate (32ml/hr) during the day (for 18 hours) and then she will get to be disconnected for 6 hours, these will be the only hours that I will be allowed to sleep but the trade-off is steps in the right direction and that's more than worth it!! We go back in on Tuesday to see her GI doctor and to evaluate how she's done with the new plan.

It is truly amazing how quickly we have developed relationships with the staff in the clinics and at the hospital. With as much time as we spend there and all that we go through together, they start to feel like family. Sarah is one of our favorites and she's moving to another clinic, we are very sad to see her go. I wish there was a way to thank these very special people, they sure deserve it! Here's a picture from our appointment today:

Because we switched to the NG, our appointment was longer than expected because we had to wait for an X-ray and also an added appointment with the dietitian so, being the great sister that she is, Claire hung out at the park in the rain so that Big Brother could play for a little while:

And we are finally able to take real baths again now that Claire's scar is healing! Claire loves baths and Big Sister loves helping:

Romans 8:37 (NLT)

"No, despite all these things, overwhelming victory is ours through Christ, who loved us."

Goodnight fellow Victors - little steps, big steps, just keep on taking steps. We've got this!


Thank you for cheering us on <3!