July 30, 2010

And the Grastrojejunal Tube is in place! It has been a pretty stressful 24 hours, so to start the blog I'm posting a fun bath photo from earlier this week. Look how much hair she's getting!

Yesterday we departed Houghton at 7 a.m. EDT and ended Charlotte's feeds at 9 a.m. CST in preparation for her 3 p.m. procedure at Children's Hospital of Wisconsin. At around 11 a.m. she woke up from her car nap and was the happiest, most content baby we have ever, ever seen. It was absolutely delightful. She stayed awake for the rest of the day (a first!) and played happily in the car and then in the hotel room when we arrived around 2 p.m.

Then we, being the cruel parents she has every reason to believe we are, took her to the Radiology center at CHW for her GJ Tube. This was supposed to be painless, but then we've heard that before.

Only one of us could be in the room with her during the procedure so I stayed while Patrick went to the waiting room. The Physician's Assistant performing the procedure had never seen an AMT button before and struggled to remove it. Another doctor made an attempt and just as their frustration was becoming clear and they were leaning toward calling GI to come remove it, it came out with one hard tug. By this time Charlotte is screaming with tears rolling down her face and I'm trying so hard not to cry (the PA said if we couldn't handle it we should both be in the waiting room so I had to look tough).

Of course placing the GJ Tube didn't go smoothly either. For some reason they had difficulty pushing it in but eventually everything was in place. In all, the procedure probably took no more than 15 minutes. When Patrick came back to the procedure room he surprised Charlotte with a balloon! She loves these balloons - so fun to play with. Here they are with the balloon back at the hotel:

We thought the GJ Tube would externally look just like the G Tube, with a low profile button. When we arrived the PA told us she had to be 20 lbs to receive the low profile version and since she's only 15 lbs 15 oz (almost 16 lbs!!!!) she got a bulky piece of hardware.

The picture above shows the material they gave us to wrap around her belly and keep the external portion of the GJ covered, away from prying, pulling hands.

And here is what we see of her GJ Tube. The round disk should be kept flush with her skin and just above it is a black mark so we can monitor if the tube is being pulled out of place. As you can see, there are three ports.

BAL. is the port used to inflate the balloon which holds the GJ in place. We are never to touch it because we would have no way of knowing if the placement is correct. Only Radiology can do this.

Gastric empties directly into her stomach. We won't use this port unless we are told to vent her G-tube and let the gastric juices out.

Jejunal empties directly into her intestines and this is where we hook in her pump to administer her feeds.

An up close view of the entry point which is often compared to the holes many people have in their ears for earrings.

Here she is all hooked up! The pump is now running at a rate of 45 mls/hr. She's yawning (not crying) in this picture.

I spoke with the Dietician at the GI Clinic this morning and she is decreasing the volume of Charlotte's feeds from 1050 mls/day to 805 mls per day. So, we'll be feeding her at a rate of 35 mls/hr 23 hrs/day. We need to flush the tube with 10 ccs of water every 4 hours to prevent it from getting plugged. If it does get plugged, get this - we can try to clear it with coke! If that doesn't work we'd need to bring her back to CHW for a fresh tube - not an easy thing for us to do in Houghton, but it'll happen if it needs to.

Last night was a rough night. Charlotte probably slept a total of 4 restless hours. I'm currently waiting on a return call from the GI Nurse to find out if we can do something to make her more comfortable.

On a side note, I've been told more than once since having Charlotte how lucky I am that she was premature and I didn't have to get so big and uncomfortable with my pregnancy. I want to let everyone know that having a premature baby is in no way a good thing. Having a premature baby that we got to take home is very much a blessing but I would trade any amount of pregnancy weight for a full-term, healthy baby. Even now it's heartbreaking to hold her hand and hold her down while she screams during procedures and last night to hold her for hours while she cried out of discomfort and threw up stomach juices. But again, the blessing is that we get to hold her and love her and know that things are going to get better, 20 years from now these will all be distant memories.