Thursday, March 11, 2010

So, one of the problems with having a blog when you don't have reliable internet access means that there can be BIG breaks between posts. It has been just over a month since my last post, and a lot has happened since then. February began with our first hospital admission with Isabella, and ended with the next. I'll get to that in a bit.

We had a busy if relatively unremarkable couple of weeks in the middle of February. We did some skiing and swimming with the girls. Mimi discovered the "special" pool at Smugg's, and we have made it our new hangout. Aside from the earsplitting noise, the North Hill pool is amazing. The older girls don't stop running, swimming, and playing the entire time we are there. Bella has a blast with the water fountains, too! We took Aunt Katie and Avery there this past weekend, and they even had fun. Mimi took the girls skiing several times, and they are skiing like pros. Look out Lindsay Vonn!

Addie has been going to art class with Mrs. Z again. She has a wonderful time, and comes home with the most beautiful projects. Her ceramic fish is going to look great in our bathroom! I hope to have both girls start gymnastics in the next couple of weeks. It should be fun, and a good way for them to burn off a bit of energy!

School vacation started on the 24th of February, and we had big plans. Unfortunately, Isabella had plans of her own! She did not feel well on Sunday, and she told us by doing a lot of crying. As this is something Bella does not do (ever), we thought she might have an ear infection. We brought her in to the dr.'s, and she checked out okay. He thought she might be hurting from pressure in her ears due to a bit of a cold. She didn't eat well at all on Sunday, but we didn't worry because she was due for her regular blood draw on Monday morning. I brought her in Monday morning to have her blood draw, then we went downstairs for her g.i. series (a precursor to her having a g-tube). While I was there Dr. Burke's office called to say her ammonia was 83. This was the highest it had been since her original hyperammonemia immediately after birth. Needless to say, I kind of panicked a bit. I went right back to the Comfort Zone to feed her, and asked Dr. Burke's office to call Dr. Korson at Tufts (Dr. Burke was on vacation). They called back to say that they were going to admit Bella. Thank God for the Comfort Zone and Tracy and Betsy. They started Bella's i.v. on the first try, and we were admitted right from there, bypassing the E.R.

In the interest of keeping things exciting, Bella decided to throw us some curve balls, and her ammonia went up overnight on Monday night. By Tuesday morning it was at about 150, and her doctors put her on i.v. meds and nutrition. That brought her levels back down by Wednesday, and we were all very relieved. We did decide that we could not go home without a g-tube though. We all felt that it was likely that we would end up back at the hospital very quickly, as we had not been able to get Bella to take all of her food by mouth, and that is what was causing her ammonia levels to rise. Luckily the pediatric surgeon had room on his schedule and was able to do the procedure on Thursday morning. Everything went very well, and she now has a neat little tube in her belly. We refer to this as her g-string. She also wears g-diapers, and will soon have a g-button when the hole has healed up enough. What exactly do you think "g" stands for?

Though Bella did very well with her surgery, she was pretty uncomfortable for the next couple of days (talk about breaking our hearts!), and it takes a bit of time to transition from i.v. to oral meds and nutrition. It was a slow process, but we were able to leave the hospital on Sunday afternoon. By this time Bella and I had not set foot outside for seven days. We were ready to leave!!!!

The next few days were spent getting fresh air for mommy and Bella, with walks and visits to the sugarhouse. I was able to go to my soccer game on Wednesday, and Daddy did a tube feeding all by himself. Yipee! Eating is now a great experience for Bella. She takes her horrible meds through her tube, so she doesn't have that awful taste in her mouth EVER. As a result, she seems to actually enjoy eating. I start every bottle by mouth, and finish with the tube if she shows signs of wanting to stop. The amazing thing is that she often finishes or almost finishes her whole bottle!!! She is even eating solid foods twice a day now. Green beans seem to have taken the early lead as far as favorites go! Her sisters are the most amazing helpers when it comes time to distracting her and keeping her little hands away from her tube. We all learned very quickly that this needs to be done. She grabbed the tube on our second day home and it really hurt her. Her sisters were a bit traumatized, so they are very quick to help when I need it. They even took her swimming last weekend!

Aunt Katie and Avery came up this past weekend, and we had a lot of fun. We kept things very mellow, but it was great to see them. We can't wait to hit the armpit, I mean NJ, as a family in April. Steve has to be there for work, so it is a great time for us all to visit for a long weekend. We can't wait to see Aunt Molly's new apartment (and man). Here's to the g-tube and a more enjoyable life for everyone!!!

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