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.

July 18

Another beautiful day on Lake Superior. After a week of 90 degrees in Minnesota it was a bit of a relief to come back to highs in the 70s (no break from the humidity however).

Charlotte has been so happy during the day this week. She plays for long stretches of time and is scooting around on her butt. No crawling yet though.

The trade-off has been some pretty intense nights. Between teething and stomach discomfort Charlotte has been protesting at pretty regular intervals overnight . We're interested to see what effect the GJ tube has. The longer continuous feeding regimen didn't pan out. She threw up just as much only smaller amounts, more often for 20 hours per day. So we're back on 2 hours on, 1 hour off until she gets the GJ on 7/29. Never thought I'd say I'm glad we're back on 2hours on, 1 hour off.

Getting less sleep overnight has meant that Charlotte sleeps a little later in the morning which mom and dad have both appreciated. After a relaxed morning we headed out with the intention of going to Hungarian Falls, but as we drove someone nodded off in her car seat and so we kept driving north for awhile, arriving at Seven Mile Point on Lake Superior.

July 11, 2010

We had a great vacation. Charlotte saw both sets of grandparents and met many of my aunts, uncles, cousins, and second cousins. It's so nice to finally feel free to take her places without fearing every cough/sneeze and without pushing hand sanitizer on everyone within arms reach of Charlotte.

We are happy to have arrived home safely and are getting back into our routine. Here are a few pictures from the week:

We visited Oxbow Park with my parents, Aunt Mary, cousin Karen, and Karen's 3 kids. The weather was perfect (some might say it was hot) and the day was lots of fun.

It was impossible to get a picture with all 4 kids looking at the camera, but this was pretty close.

Children of the Corn? No, just Charlotte's first time seeing a corn stalk!

Charlotte isn't quite sure what to think of grass, especially damp grass. Though she is quite skilled at not touching the grass with any of her limbs - look at that balance!

"He loves me, he loves me not..."

She wants to crawl, and is so close! Good thing she's not going anywhere too fast because our apartment is not yet baby proofed. We're slowly but surely packing up all of our books and bookshelves so that she won't pull them down on top of herself when she does become mobile.

Here's a picture of Pat going against doctor's orders. :) Charlotte loves to stand and she's pretty good at holding herself up against the couch. However, the developmental doctor, Dr. Bear, strongly advised us to not hold her up with her weight on her legs. Her philosophy is that babies have so many stages to go through (sitting, crawling, then pulling themselves up, then walking) and we don't want to encourage her to skip them. We follow the rules most of the time, but sometimes it's just fun to see her stand up...and she loves it!

A day late, but here is Charlotte's 11 month photo! What a great 11 months it has been - and almost one year! We feel so blessed to have such a fun, happy little baby. Sure she has a feeding tube, but she is so easy to take care of. She's just a happy girl...except for an hour or so before bed time during which she experiences the "unhappy hour" (thanks to the Hoenisch's for that term, I like it). Oh, and she's getting her first tooth! We can feel it when she bites our finger, and just this morning we could see where the skin is starting to break. I was beginning to worry she might be limited to jell-o forever!

We have an appointment with Radiology at CHW to have Charlotte's G tube converted to a GJ tube on July 29. At first we wanted to put it off until September and hope she would start keeping her food down, but it's just not likely and we hope getting this done sooner rather than later will make her life more pleasant and make her want to eat by mouth. In addition to concern about her weight gain, the GI doc's decision to move forward with the GJ tube was precipitated by the speech therapist putting a bit of applesauce on Charlotte's lip. Charlotte immediately threw up without even touching the applesauce with her tongue or the inside of her mouth. Who would want to eat when their gag reflex is that strong? Definitely not Charlotte.

July 6, 2010

No new pictures, but I wanted to type up a blog about Charlotte's appointments in Milwaukee today. She saw Dr. Arvedson (speech therapy) and Dr. Stephens (GI).

Charlotte impressed Dr. Arvedson and took water from the spoon like a pro. She even took sips out of a plastic cup but threw up as soon as applesauce was introduced. Dr. Arvedson said we should try to stop feeding practice before it gets to that point but she'd wanted to push her a bit and see what she'd do. She also advised we give Charlotte flat suckers, pretzel rods, and whole pickles to put in her mouth. I'm looking forward to seeing what she does with them.

Dr. Stephens has joined Pat and I in the 'Concerned about Charlotte's Lack of Weight Gain Camp' and wants to take some steps to reduce the amount she throws up.

Her measurements today were:
Weight: 15 lbs 6 oz (6.985 grams)
Length: 25.2 inches (64.1 cm)

Dr. Stephens is recommending we replace Charlotte's Gastrostomy tube with a Gastrojejunal (GJ) Tube, and he placed the order for a GJ Tube so that we can come back as soon as we'd like to have radiology put it in. The GJ Tube will bypass the stomach and deposit feeds directly into the intestines, theoretically preventing Charlotte from throwing up. A picture of a GJ Tube can be seen here: http://www.mountnittany.org/assets/images/krames/115616.jpg

Once on the GJ Tube Charlotte will need to be on continuous feeds, meaning she'll be connected to her pump for most of the day. Currently she is connected 14 hours a day - 2 hours on, 1 hour off from 4 a.m. to midnight at a rate of 70 mls/hr. Now, we're going to reduce her rate to 60 mls/hour over 16 hrs/day starting at 5 a.m. and ending at midnight. We'll be playing with the timing and feed rate over the coming weeks and hopefully she'll keep more of her feeds down.

We're happy the medical part of our vacation is over and we can relax and enjoy the beautiful (and humid!) summer weather.

July 4, 2010

Vacation time! We arrived in Eau Claire late Wednesday night to start our vacation. We enjoyed spending time with Pat's parents and Charlotte got to take her first sink bath. Judging by the smiles on her face, I don't think she missed her whale tub too much.

We had a very short visit with my cousin Heather's family in Cadott. For whatever reason Charlotte's pump didn't charge properly the night before and it wasn't until we arrived that the battery died, preventing us from starting her feed. So, we quickly returned to Eau Claire and plugged in her pump. Lesson learned: we will always bring the pump charger with us just in case.


Saturday morning came early and we left Eau Claire at 4:30 a.m. for Afton, MN for the Afton 50k Trail Run. Patrick made me proud and dropped out when he felt the heat getting to him; perhaps a decision made easier since he has his sights on future races and didn't want to delay his training. Charlotte enjoyed the race and even got in a nice nap!

That afternoon while Pat went to a Twins game my parents picked up Charlotte and me and brought us to Kasson for Charlotte's first trip to Southeastern Minnesota.

Happy 4th of July! Charlotte showed us a new first today, she smiled for the camera. Really hammed it up!

Immediately preceding this photo was a very serious face until she saw the camera pointed in her direction.

Say Cheese!
So tired. Goodnight.