When we arrived at the new hospital it was chaotic.. We arrived on May 10, 2009 and her 1st open heart surgery called the Norwood was scheduled for May 12, 2009.. I cried so much.. The day before her surgery I got a surprise. They finally let me hold my baby girl for about 10 minutes. Oh how I longed for this.. She was so fragile, I was scared to hold her with all her wires and tubes.. On the morning of her surgery we had a minister come in and say a blessing over her..To help God guide the dr.s hand durning her surgery.. When they took her off to the OR, I just sat and cried and cried and prayed so much.. It was like a 4 hour surgery.. When it was over the dr. came out and told us it all went well.. Thank you god for keeping her safe. After about 4 days we came in and she was off the vent. We were totally shocked. But we got too excited because she d-stated and had to go back on the vent. We were told we would stay at that hospital until her recovery to go home.. Well that was not to be the case.. They sent her back to the original hospital 10 days after surgery.. We got to the hospital about an hour after she arrived.. The dr. met us and said Bethanne was in bad shape. They sent her back with septisemia.. Her stomach was bloated and they infiltrated a calcium drip in her left arm and she almost lost her arm.. The dr. was so mad because they didn't know the cause of the stomach or anything. Things did not look good at all..She was in worse shape now then before.. She was in the NICU for a long time..She was d-stating about 8-9 times a day.. The beepers and sounds of the machines was very scary and mind boggling. After about a month of being back at this hospital the dr. ran some tests to see if Bethanne had cystic fibrosis.. If she did they feared she would never come off the ventilator..So I told my friend I was going to ask the drs. to remove the vent and let whatever happened, happen. I didn't want to keep seeing her live like this.. It wasn't fair.. Well I never did ask them to take her off. So each day her belly just wasn't getting better. It wasn't getting worse either. We would come home on the weekends to get a break from the hospital which is 3 hours away and her cardiologist called me a few times and said things weren't good and he didn't expect her to pull through.. Oh dear God, what can I do? How can I save my baby? The answer was, I couldn't. If God wanted her home she was going. Then one morning we went in and the vent was gone.. Oh my god what are they doing.. After they removed the vent and some of the pain meds she started getting better.. The first time to hear her cry was just so heart wrenching. But I could finally hold my little girl now.. It had been about 1 1/2 months after her surgery. Our next obstacle was getting her to feed.. She would not take the bottle for long and then she always threw up.. She didn't take well to the formula so they tried using breast milk. She did no better on that.. They put in a NG tube in her nose to feed her.. She was doing well with that.. They started out with very little bits of formula.. Then we started small feeds with the bottle, still not real good with that..Finally the day came when she came off the oxygen. Oh what a thrill that was.. Our daughter was getting better.. She would soon be coming home.. They decided in order for her to come home she needed a mickey button (feeding tube) So another surgery to put that in. We had to learn how to feed her through the button.. That was a scary experience.. But we did it.. It was time to bring our little girl home.. Finally..On July 29, 2009 it was time. I was so happy to get Bethanne home but so very scared too.. What is something happened? What would I do? But I just took it day by day.. We worked on bottle feeding her also.. After a month of being home she only ate from the bottle. No more feeding tube feeds.. That was so great.. When we got her home she thrived. She grew and she is so very loved.. She had lots of company.. She has liked the attention.. It was nice to hold her all the time and not to hear any beeps. At her 6 month check up with the cardiologist and kidney dr. all was well.. They removed the mickey button.. That was a great day.. Bethanne continues to thrive and learn.. In January when Bethanne was 9 months old she had to go in for a heart cath.. They were hoping they could wait about 6-8 weeks for her second surgery but overnight they could not keep her oxygen above 70, so she was sent to the same hospital that did her first open heart surgery..
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