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First follow up doctor appointment
We went to our first follow up visit to the cardiologist today. As you can tell from the picture we had a GREAT visit. Gracelyn is up 5 ounces since last Thursday. She is eating almost a full bottle (50 cc's) every feeding. We tried giving her her medications by mouth and she did great. They tested her saturation with and without her oxygen on, she was at 100% when calm and at 88% when she was crying. They want her between 75-85%, she is a lot higher than they want her. So, needless to say, we have lost the oxygen and the feeding tube!! YEAH! We are so happy! Jeff couldn't wait to get them off. The minute the doctor walked out of the room he began removing things.
She has also been taken off of half of her medications. She is still on the beta blocker and aspirin. Both of which she could be on for the rest of her life and we didn't expect the doctors to take her off of them. They did chest x-rays today and it showed that her heart was larger than it was when we left a week ago. The doctor told us that the x-rays aren't exact and that any movement could affect the picture. He told us he wanted to do and echo on her right then and that we would know what was going on before we left. Fortunately, he was right, nothing was wrong. The x-ray didn't show her heart exactly as it is. The sonographer that did her echo kept saying how great her heart function was. The doctor told us that he is sure she will have to have the next procedure, but miracles do happen. We pray for those miracles to heal her heart. We won't know for a while what is going to happen. We learned today that though her right ventricle is really small, thick and firm, everyone's right ventricle is when they are born. Sometimes is takes 1-3 months to loosen and with her probably 6 months, but the chance for it to grow IS there. We won't know exactly what it is going to do for a while, but fortunately with the third surgery taking place in 2-3 years we have the time for it to change and improve. We have hope that it can grow and begin to work. It is really difficult to sit back and know that things can change, but have no control or power to help her chance of improvement. Right now our only power is our greatest power and that is the power of prayer. We are so grateful to those that continue to offer prayers on her behalf.
We went to our first follow up visit to the cardiologist today. As you can tell from the picture we had a GREAT visit. Gracelyn is up 5 ounces since last Thursday. She is eating almost a full bottle (50 cc's) every feeding. We tried giving her her medications by mouth and she did great. They tested her saturation with and without her oxygen on, she was at 100% when calm and at 88% when she was crying. They want her between 75-85%, she is a lot higher than they want her. So, needless to say, we have lost the oxygen and the feeding tube!! YEAH! We are so happy! Jeff couldn't wait to get them off. The minute the doctor walked out of the room he began removing things.
She has also been taken off of half of her medications. She is still on the beta blocker and aspirin. Both of which she could be on for the rest of her life and we didn't expect the doctors to take her off of them. They did chest x-rays today and it showed that her heart was larger than it was when we left a week ago. The doctor told us that the x-rays aren't exact and that any movement could affect the picture. He told us he wanted to do and echo on her right then and that we would know what was going on before we left. Fortunately, he was right, nothing was wrong. The x-ray didn't show her heart exactly as it is. The sonographer that did her echo kept saying how great her heart function was. The doctor told us that he is sure she will have to have the next procedure, but miracles do happen. We pray for those miracles to heal her heart. We won't know for a while what is going to happen. We learned today that though her right ventricle is really small, thick and firm, everyone's right ventricle is when they are born. Sometimes is takes 1-3 months to loosen and with her probably 6 months, but the chance for it to grow IS there. We won't know exactly what it is going to do for a while, but fortunately with the third surgery taking place in 2-3 years we have the time for it to change and improve. We have hope that it can grow and begin to work. It is really difficult to sit back and know that things can change, but have no control or power to help her chance of improvement. Right now our only power is our greatest power and that is the power of prayer. We are so grateful to those that continue to offer prayers on her behalf.
She is so darling! Glad to hear her appt went well! -Jen
ReplyDeleteYIPPEE!!!!! I am so excited that she has all of her tubes out! When Emma was able to have all of hers off, we upgraded her to a "wireless" status. I hope you enjoy your new wireless version of Gracelyn. I hope she continues to amaze us.
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