The babies are patiently awaiting their surgeries. In the meantime, they have been put on continuous tube feeds, the tube itself was moved down past the stomach a bit and there are no more bottle feeds. They were still vomiting/spitting up a great deal so these changes are definitely making life a bit more comfortable for the twins until their surgeries.
Tenley loves her singing birdies
Sunday, June 13, 2010
Thursday, June 10, 2010
June 10, 2010 - Part II
Easy news first...both babies did well with their allergy tests. Will had a small trace of allergies for beef, nuts and chocolate but none of these should be an issue since he shouldn't be eating these foods anyway until he's much older. Tenley showed no sign of any allergies.
The reflux test results told a much different story. A PH level of 4 is considered highly acidic. Normal babies reach a PH of 4 maybe 5-10 times in a 24 hour period. Tenley reached a PH of 4 over 200 times and Will reached it over 250 times. All this means is that both babies are now proven to have very severe reflux and will require a three hour surgery to help minimize, if not eradicate, the reflux. They are trying to schedule both babies for the same day but they wont know for sure until somtime later next week. The surgery is called "Nissen" and basically what it entails is wrapping a part of the stomach around the esophogus which then creates a one-way valve to stop the stomach contents from going back up the espophogus. After the surgery, they will need to be intubated again (either over night or for a few days) until they can prove they are breathing on their own again. At first, this wrap around the esopogus will be very tight and will therefore make it difficult for them to vomit or burp. So, they will also be getting a G-Tube inserted which not only serves as a "venting out" mechanism but it will also be used for tube feeding once the babies go home. G Tubes are great for babies who don't take bottle feeding well, however they often times become infected and fall out so it's just an extra something to keep mommy and daddy busy until they are fully on bottle feeds and can have it removed. Some babies have the G Tube in for 4 months while others need it for years
For now, they are off the allergy-free formula (which Will never liked that much anyway) and have every feed via feeding tube except for one time a day when it's a bottle full of mom's milk.
The reflux test results told a much different story. A PH level of 4 is considered highly acidic. Normal babies reach a PH of 4 maybe 5-10 times in a 24 hour period. Tenley reached a PH of 4 over 200 times and Will reached it over 250 times. All this means is that both babies are now proven to have very severe reflux and will require a three hour surgery to help minimize, if not eradicate, the reflux. They are trying to schedule both babies for the same day but they wont know for sure until somtime later next week. The surgery is called "Nissen" and basically what it entails is wrapping a part of the stomach around the esophogus which then creates a one-way valve to stop the stomach contents from going back up the espophogus. After the surgery, they will need to be intubated again (either over night or for a few days) until they can prove they are breathing on their own again. At first, this wrap around the esopogus will be very tight and will therefore make it difficult for them to vomit or burp. So, they will also be getting a G-Tube inserted which not only serves as a "venting out" mechanism but it will also be used for tube feeding once the babies go home. G Tubes are great for babies who don't take bottle feeding well, however they often times become infected and fall out so it's just an extra something to keep mommy and daddy busy until they are fully on bottle feeds and can have it removed. Some babies have the G Tube in for 4 months while others need it for years
For now, they are off the allergy-free formula (which Will never liked that much anyway) and have every feed via feeding tube except for one time a day when it's a bottle full of mom's milk.
June 10, 2010
I will have a nice, long post tonight....I left my notes at home and I want to make sure I don't leave any part out. There was a lot discussed in their meeting with the surgeon yesterday (allergy test and PH test results) so stay tuned for that update. To tide you over for now, since it's been a few days, here are some cute pics...
Monday, June 7, 2010
June 7, 2010
Tenley and Will are both off their Prevacid (reflux medicine) in preparation for their PH probe tests today and tomorrow. They've been Prevacid-free for a few days now and they pretty much either spit up or vomit after every feeding at this point. This makes mommy and daddy sad, but they have to stay off the med for more accurate test results.
Sleeping babies
Will in his Physical Therapy chair admiring the mobile
Happy Family
Sleeping babies
Will in his Physical Therapy chair admiring the mobile
Happy Family
Friday, June 4, 2010
June 4, 2010
Tenley had a very successful eye exam. Her eyes are considered to be in a stable status and therefore do not require another exam for a month or so (her and Will are now both on the same eye exam schedule). She decided last night that she wanted to eat a full bottle for the first time in awhile! She weiged in at 7lbs 10ozs.
Will had an EEG yesterday. The reults showed no proof of any seizure activity. They just wanted to test him again since they haven't been increasing his medicine even though he's been gaining weight. He weighed in at 8lbs 7ozs.
Both babies were seen by a surgeon to evaluate whether or not they will be discharged with G-Tubes (a feeding tube that is surgically inserted so they can still be tube fed when they get released if needed). It was determined that they both need a PH probe test (which lasts a full 24 hours) in order to move forward with any decision. Tenley's PH probe test is Monday and Will's is Tuesday. They will meet with the surgeon on Wednesday where they will discuss these results and hopefully the allergy test results (allergy test results take up to 10 days).
Will had an EEG yesterday. The reults showed no proof of any seizure activity. They just wanted to test him again since they haven't been increasing his medicine even though he's been gaining weight. He weighed in at 8lbs 7ozs.
Both babies were seen by a surgeon to evaluate whether or not they will be discharged with G-Tubes (a feeding tube that is surgically inserted so they can still be tube fed when they get released if needed). It was determined that they both need a PH probe test (which lasts a full 24 hours) in order to move forward with any decision. Tenley's PH probe test is Monday and Will's is Tuesday. They will meet with the surgeon on Wednesday where they will discuss these results and hopefully the allergy test results (allergy test results take up to 10 days).
Thursday, June 3, 2010
June 3, 2010
I apologize for my lack of blogging. Moving is a bit time consuming and REALLY exhausting.
Not too much status-wise to report. Both babies had blood taken Tuesday to determine if they have any allergies. Due to their age, the test will show true positive results, but could show that they aren't allergic to something when they really could be. It's just worth a shot at this point to see if they do get any true results showing allergies.
Tenley is still really congested...it's only day 7 on the allergy-free formula so there's still 7 more days for improvement. Will is still doing his infamous spree of eating really well for multiple feeds then refusing to take much at all from the next few feeds.
Not too much status-wise to report. Both babies had blood taken Tuesday to determine if they have any allergies. Due to their age, the test will show true positive results, but could show that they aren't allergic to something when they really could be. It's just worth a shot at this point to see if they do get any true results showing allergies.
Tenley is still really congested...it's only day 7 on the allergy-free formula so there's still 7 more days for improvement. Will is still doing his infamous spree of eating really well for multiple feeds then refusing to take much at all from the next few feeds.
Wednesday, June 2, 2010
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