May 5, 2005:  Routine doctor's appointment at Texas Children's Neonatolgoy Graduate Clinic.  Weight:  12 lbs 13 oz  Length:  23.4 inches

Head Circumference:  40.6 centimeters

 

Overall, she is staying on her percentile curves (around 50th or so for weight and head circumference/a little less for length)

 

May 13, 2005:  Today we took Theresa back to her surgeon, Dr. Cass, to have  her feeding tube replaced with a gastrostomy "button."  It isn't exactly flush with her skin (it sticks out about a centimeter or so), but it should be a large improvement over the tube which didn't allow her to lay on her stomach at all.  She was NOT happy about the replacement though.  She was smiling at him before it happened, and then he yanked out the tube, and inserted the button and she was MAD!  It almost sounded like she was cursing at him! :)

 

Tim fed her at the clinic, but I am apprehensive about it since it is "new."  I tried at home, and you have to press pretty hard to "lock" the extension tube into place and I guess she is still pretty sore, because she cried and so I didn't press hard enough and the tube came out of the button while I was feeding her!  I soaked her and then we had to start all over again.

 

May 14, 2005:  This button is still new to me, so I don't like it (I'm hoping it will grow on me)  Today, I forgot to close the med port on her extension tube and it got her wet.  She is still sore and cranky from the button, so we haven't given her any tummy time yet.

 

May 15, 2005:  This time Tim forgot to close the med port (sorry Theresa!) and got her wet, but we are learning.  She is less sore, but still we are cautious with bathing her (supposedly it isn't a problem) and tummy time.

 

May 17, 2005:  Since her therapist is coming tomorrow, we decided to try tummy time.  She doesn't like it, but I don't think it is from pain or discomfort from the button, I think it is just unusual to her.  We're getting more used to feeding her with the "button" but since you don't leave the extension tube in her it doesn't allow the excess volume to go anywhere, and so she has been gagging a lot more after her feedings.

 

May 18, 2005:  She had therapy, and still fretted when we put her on her stomach, but at least she can actually lay on it.

 

May 20, 2005:  Her 4 month appointment (delayed due to her g-button procedure) was today with her local pediatrician, Dr. Ingraham.  her weight was 13 pounds 9 ounces; length was 24 inches, and head circumference was measured at 42 centimenters.  A little bit off the curve with her head circumference, but no one mentioned anything, so I guess we'll wait and see.  She was excellent (as usual) when it came to immunization shots.  I guess having everything else done to her prepared her to take minor pain without fussing too badly.

 

May 25, 2005:  When Theresa's therapist came today, she would not cooperate at ALL!! Yesterday, she was extremely fussy as well, but I just attributed it to going to Nathaniel's gymnastics class and getting too hot since she was in the front carrier the whole time.  When she got home I noticed her old hernia repair scar was red, but again, I just thought it was because of the front carrier.  This morning I noticed it was oozing a little (puss?) but it has always had a hard scab on it so I thought it had gotten knocked loose.  Her  therapist, Joyce, really noticed that she wasn't being "Theresa" so I called and got her an appointment to see Dr. Cass' sub on Friday (he is out of the country at a conference.)

 

May 26, 2005:  Even though her appointment is on Friday, I called this morning to have her seen today.  My mom came over for a visit, and it looked even worse than yesterday.  A pustule had formed on a formerly healed part of the scar, and the part that was oozing puss was also oozing blood when she wretched (which she had also been doing a bit more)  We were afraid it was an infection, so they fit us in today with a doctor who had never met Theresa.

 

Much to our relief and surprise, the fellow that actually assited on the hernai repair, Dr. Miniati was there and saw her name on the list and took her appointment.  The infection hadn't spread, so he assigned her an antibiotic that was good for skin infections and showed us how to bandage it (with a wet bandage) and when it dried and stuck to the scab to rip it off (yes I actually have to do this twice a day) until the old skin is gone and new healthy skin grows up.  Apparently, it was never healing right, and her body was tricking itself by forming the wrong kind of skin (a loose, stringy patch) instead of solid, heatlhy tissue.

 

She screamed at him and glared even when he was done.  Dr. Miniati felt badly, but he did help her.  I just don't want her to glare at me when I have to do it at home!

 

She was weighed, and is up to 14 pounds even.

 

May 27, 2005:  Her scar is already looking so much better than last week even!  I HATE having to do the wet/dry bandages, but if it helps....

 

We have started Theresa on rice cereal in the hopes that she will try to eat by mouth if it isn't too thick (we were doing thickened AR formula with a spoon, which she was okay with, but we think that this will taste better - it certainly smells a lot better!)

 

If I sing a lot of "food songs" (I like to Eat Apples and Bananas is the favorite right now) she will at least let me spoon it in before she refuses anymore.  She's not necessarily swallowing it, but she isn't automatically gagging and screaming either.  I can get about 1/2 ounce in 15 minutes.

 

May 31, 2005:  It is nearly completely healed.  I don't mind doing the bandages anymore because it is getting so small.  It looks better than it ever did and doesn't seem to make her overall scar as obvious as it used to be.