Bekah's doctors kept going back and forth with deciding whether or not to send us home before surgery, when surgery would occur, etc. There was so much information thrown at us all at once. It was very confusing at the time.
She was not eating well at all. She was getting sick every bottle so they were needing to NG tube feed her but she would get sick even then. It was very hard to watch her struggle so hard and get so tired so easily. She did not like the NG tubes and kept pulling them out but since she wasn't taking enough by bottle; they needed to keep inserting new ones.
All the tests that they ran for her digestive system came back negative so nothing was wrong there. After many trials and errors; it was concluded that it may just be Reflux and hopefully she will outgrow it. She was also put on the Sensitive-Lactose Free Formula. After a few weeks, she was starting to eat very well and gaining weight.
At one of many ECHOs that she has had, they discovered that her Main Valve is leaking which made them want to do her first open heart surgery sooner than later. We would definitely NOT be going home before surgery. Now it was a waiting game to see when Surgery would be scheduled. And, once again they went back and forth. She was stable enough to wait on surgery BUT we also couldn't go home. It was a little frustrating to say the least.
If that wasn't enough... They had some genetic testing done because of the type of CHDs my husband A.J. and Bekah has co insides with DiGeorge Syndrome. They were both positive for DiGeorge Syndrome(depletion of Chromosome 22q); which also has many other symptoms along with CHDs. ( Tetrology of Fellot and Truncus Arteriosus).
She was not eating well at all. She was getting sick every bottle so they were needing to NG tube feed her but she would get sick even then. It was very hard to watch her struggle so hard and get so tired so easily. She did not like the NG tubes and kept pulling them out but since she wasn't taking enough by bottle; they needed to keep inserting new ones.
All the tests that they ran for her digestive system came back negative so nothing was wrong there. After many trials and errors; it was concluded that it may just be Reflux and hopefully she will outgrow it. She was also put on the Sensitive-Lactose Free Formula. After a few weeks, she was starting to eat very well and gaining weight.
At one of many ECHOs that she has had, they discovered that her Main Valve is leaking which made them want to do her first open heart surgery sooner than later. We would definitely NOT be going home before surgery. Now it was a waiting game to see when Surgery would be scheduled. And, once again they went back and forth. She was stable enough to wait on surgery BUT we also couldn't go home. It was a little frustrating to say the least.
If that wasn't enough... They had some genetic testing done because of the type of CHDs my husband A.J. and Bekah has co insides with DiGeorge Syndrome. They were both positive for DiGeorge Syndrome(depletion of Chromosome 22q); which also has many other symptoms along with CHDs. ( Tetrology of Fellot and Truncus Arteriosus).
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