Tuesday, April 13, 2010

April 13, 2010


What a week of travel! Last Wednesday we departed Houghton for La Crosse, WI. On the way stopped by Pat's parents' home in Eau Claire to pick-up Charlotte's baby jogger. We'd been waiting until spring and for Charlotte's neck strength to develop before purchasing any type of stroller, and the time has come. Pat's sister was kind enough to pick it up from the REI store in Bloomington and give it to their parents for storage until last Wednesday. Charlotte likes it as long as she's moving and tends to fall asleep for most of her time in it.

We were in La Crosse Wednesday - Saturday. Charlotte doesn't mind hotel stays, especially when we bring her favorite items from home: her musical, light-up ring stacker and the boppy. I attended a conference while my parents visited and spent time with Pat and Charlotte. On Saturday Pat's sister drove down from the Twin Cities for the afternoon and that evening Charlotte met our friend Cara. Charlotte just loved all the visitors!

Before leaving La Crosse on Sunday we decided to take a tourist's detour up Granddad's Bluff. Quite the view and a nice opportunity for a family photo (with us facing into the sun, hence all the squinty eyes). We headed to Milwaukee on Sunday and enjoyed dinner with the Mehls. Now that its April we're loving taking Charlotte out and being less germaphobic.

Monday we returned to Children's Hospital of Wisconsin to see the GI Specialist. Our scheduled visit wasn't until mid-May, but Charlotte has been vomiting large, concerning amounts. She stopped gaining weight about 2 weeks ago, leveling off at 13 lbs 9 oz, so the doctor and nurses thought we might try a new button.

The Mic-Key button, which she had before, has a balloon which is inflated inside the stomach to hold it in place. Her new button, the AMT button, has a smaller "mushroom" which holds it in place. The Mic-Key button was nice because in March they gave us extra buttons and supplies in case it should come out, we could replace it ourselves at home. The AMT button can only be removed and replaced by a doctor and its more painful for Charlotte. Case in point, prior to the tube insertion Charlotte was smiling and talking to the nurse, which she continued even as the Mic-Key button was removed. As soon as the nurse began pushing the AMT button in Charlotte's face showed feelings of betrayal and she just screamed. Her little tears are just heartbreaking! We hope the smaller mushroom will take up less space in the stomach, resulting in fewer episodes.

Because we live pretty far from CHW and we can't just go back in a couple days if things don't work out we asked lots of questions about what else could be the problem. Other options included a GJ Tube which would bypass the stomach and empty directly into her lower intestines. This is not ideal because we want her digestive system to continue working as normally as possible and because this tube would require a very slow feed rate, meaning Charlotte would be attached to her pump 14 hours a day. Other approaches would be more invasive with pretty serious complications.

It has only been a couple days but we haven't seen much (if any) improvement with the AMT button, but are hoping things improve as she gets older. We'll continue to watch her weight very closely to avoid serious nutritional deficits.

The best part of our trip to CHW was running into a friend from the NICU. It was also nice to see other parents with kids of all ages feeding them through tubes in the waiting room. After this trip we've decided we need to get Charlotte outside and are going to try to be comfortable with stares and questions as we feed her in public places. We apologize now for any floors or furniture she throws up on. We'll clean it up to the best of our ability. :)

While there the speech therapist made time in her schedule to see Charlotte. We are to continue introducing positive experiences with a the spoon (dry, then with a drop of water, then with a drop of milk) for about 5 minutes, 3 times/day. The therapist was confident Charlotte would not be throwing up like this when she goes to school, so that was good news. We hope she'll be eating normally by then too, but slow and steady wins the race (as per the speech therapist who reminded us of the tortoise and the hare).


After riding in the car from Milwaukee to the UP Charlotte wanted to drive the last leg of our trip. We strapped her in to the driver's seat but she was much more interested in the seat belt than the road, so we had to put her back in her car seat. We'll try again in about 16 years.

Note: No children were harmed nor cars turned on in the taking of this photograph.


Here is Charlotte's traditional monthly photo. This one is for 8 months, even though it was taken 3 days after the 10th. We were on the road for the 10th and forgot the beanie baby at home. However, we know her weight hasn't changed so its pretty accurate. Her 8 month weight: 13 lbs 9 oz and length: 22.75 inches.

4 comments on "April 13, 2010"

Andi on April 14, 2010 at 7:24 AM said...

Sounds like a fun trip. Hang in there, guys!

Anonymous said...

Way too cute pictures!

Anonymous said...

HI Katie, Patrick, Charlotte,

Thanks for posting. Looking forward to seeing you in Duluth come Grandma's weekend. Charlotte has come a long ways Baby!

Love, The Duluth Housing Crew &
Leona

Debbie said...

She can take me for a ride anytime!!
Beautiful girl and so lucky to have you guys for parents!!

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