Some Background Info Pt. 2!
I never believed anybody who told me "It gets easier" "things will get better" "soon this will become normal". But to my surprise, it actually did!! we just took things one day at a time, reached out to support groups, and learned more about Chloe. Actually, this is part of the reason I started this blog. If I can help anyone know that it truly does get better and that you are not alone then I am happy. Chloe went from a very fragile, miserable, healing newborn to a happy, active 6 months old with quite the personality! I thank God for getting us through it. We managed to do what we thought was impossible. Not only are we just getting by, we are very very happy and so proud of Chloe. I do not regret a single thing. Of course if I could, I would trade places with my daughter and take away the complications, but I also believe everything happens for a reason and I would not change a thing. Everything that we went through and will continue to go through is shaping us to become the family we are supposed to be. Chloe is going to be such a strong woman one day who just kicks butt!! The journey is nowhere near over, she will need lifelong treatments, operations and medical care from time to time. That is just the reality of CHD (Congenital Heart Disease). Ill talk more about what the future could mean for Chloe in another post. Right now I am going to tell you about how things changed.
A huge, huge change is Chloe's feeding situation. She went from having a rigged AMT G-JET (which she pulled out like every 3 days) to having a G tube. The G tube cut out so much stress from our lives. The G tube is different because it feeds her into her stomach, it can actually be submerged under water (yay for better baths!!), can't get pulled out super easily, and if it does get pulled out I can replace it myself. Thank God she had not pulled it out yet! *knocks on wood* Now that we are feeding her into the G, she isn't continuously venting from the G anymore. We were told just to vent her if she is gassy or fussy. To be on the safe side, I vent her after every nap just to prevent any fussiness that could happen (she's not allowed to cry, remember) Ill try to make a post showing how we feed and vent Chloe sometime! she still can't burp and because the surgeon made her nissin fun duplication so tight, she may never burp. It cannot be undone but it may loosen with time. The good thing about her tolerating food into her tummy is now we get to start...FEEDING THERAPY!!!!!! This was the best news I got all year so far. It means a future without the tube...even if it takes a couple years. When she was fed into the intestines I couldn't see an end in sight with the tube. I thought she may honestly need it forever. Even if she did, I know we would all be ok and make it would. We wouldn't be sad about it, it would just be a different way of feeding her. So we are currently in a process of condensing her feeds to get to the goal of bolus feeding her. The difference between continuous and bolus: continuous feeds are a slow rate, continuously throughout the day and night, a lot of times up to 24 hrs a day. Bolus feeds are a much faster rate, a "meal" if you will. A larger amount of food in a small amount of time, a few times a day. We are slowly making our way to bolus as long as she tolerates it. We have to go slow because she does have another surgery coming up so we don't want to upset things...she is in a great place now!
Cardiac wise, she is stable. she is not on any supplemental oxygen right now. She was on oxygen for about a week before she had another operation. The operation was to add a second stent to her BT shunt to increase more blood flow again. She is outgrowing her shunt but the full repair was not preformed yet because she was sick at the time. If she is sick during surgery is can be deadly because the lungs don't respond well to the bypass machine. She needs to be perfectly healthy for her full repair! During that operation for the stent, the surgeon got a good look at her hear and said she is a very good candidate for surgery, pressures are good and sizes are good so that is promising. Right now we just focus on letting her grow and keeping her healthy!
Overall, Chloe is doing very very well for the time being. We are treating her like a normal baby, just with some extra special care. We do get her out of the house, she loves going for adventures! We don't really limit her, she hardly cries anymore, and I feel like things are really progressing in such a good way. She is in feeding therapy and also starting occupational therapy after the full repair surgery. She is also doing a daily nebulizer treatment to prevent sickness, getting her RSV shots monthly, and getting her glasses soon. Baby steps!
I never believed anybody who told me "It gets easier" "things will get better" "soon this will become normal". But to my surprise, it actually did!! we just took things one day at a time, reached out to support groups, and learned more about Chloe. Actually, this is part of the reason I started this blog. If I can help anyone know that it truly does get better and that you are not alone then I am happy. Chloe went from a very fragile, miserable, healing newborn to a happy, active 6 months old with quite the personality! I thank God for getting us through it. We managed to do what we thought was impossible. Not only are we just getting by, we are very very happy and so proud of Chloe. I do not regret a single thing. Of course if I could, I would trade places with my daughter and take away the complications, but I also believe everything happens for a reason and I would not change a thing. Everything that we went through and will continue to go through is shaping us to become the family we are supposed to be. Chloe is going to be such a strong woman one day who just kicks butt!! The journey is nowhere near over, she will need lifelong treatments, operations and medical care from time to time. That is just the reality of CHD (Congenital Heart Disease). Ill talk more about what the future could mean for Chloe in another post. Right now I am going to tell you about how things changed.
A huge, huge change is Chloe's feeding situation. She went from having a rigged AMT G-JET (which she pulled out like every 3 days) to having a G tube. The G tube cut out so much stress from our lives. The G tube is different because it feeds her into her stomach, it can actually be submerged under water (yay for better baths!!), can't get pulled out super easily, and if it does get pulled out I can replace it myself. Thank God she had not pulled it out yet! *knocks on wood* Now that we are feeding her into the G, she isn't continuously venting from the G anymore. We were told just to vent her if she is gassy or fussy. To be on the safe side, I vent her after every nap just to prevent any fussiness that could happen (she's not allowed to cry, remember) Ill try to make a post showing how we feed and vent Chloe sometime! she still can't burp and because the surgeon made her nissin fun duplication so tight, she may never burp. It cannot be undone but it may loosen with time. The good thing about her tolerating food into her tummy is now we get to start...FEEDING THERAPY!!!!!! This was the best news I got all year so far. It means a future without the tube...even if it takes a couple years. When she was fed into the intestines I couldn't see an end in sight with the tube. I thought she may honestly need it forever. Even if she did, I know we would all be ok and make it would. We wouldn't be sad about it, it would just be a different way of feeding her. So we are currently in a process of condensing her feeds to get to the goal of bolus feeding her. The difference between continuous and bolus: continuous feeds are a slow rate, continuously throughout the day and night, a lot of times up to 24 hrs a day. Bolus feeds are a much faster rate, a "meal" if you will. A larger amount of food in a small amount of time, a few times a day. We are slowly making our way to bolus as long as she tolerates it. We have to go slow because she does have another surgery coming up so we don't want to upset things...she is in a great place now!
Cardiac wise, she is stable. she is not on any supplemental oxygen right now. She was on oxygen for about a week before she had another operation. The operation was to add a second stent to her BT shunt to increase more blood flow again. She is outgrowing her shunt but the full repair was not preformed yet because she was sick at the time. If she is sick during surgery is can be deadly because the lungs don't respond well to the bypass machine. She needs to be perfectly healthy for her full repair! During that operation for the stent, the surgeon got a good look at her hear and said she is a very good candidate for surgery, pressures are good and sizes are good so that is promising. Right now we just focus on letting her grow and keeping her healthy!
Overall, Chloe is doing very very well for the time being. We are treating her like a normal baby, just with some extra special care. We do get her out of the house, she loves going for adventures! We don't really limit her, she hardly cries anymore, and I feel like things are really progressing in such a good way. She is in feeding therapy and also starting occupational therapy after the full repair surgery. She is also doing a daily nebulizer treatment to prevent sickness, getting her RSV shots monthly, and getting her glasses soon. Baby steps!
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| This was after her latest operation to add that second stent in her heart. |
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| feeding Chloe!! |
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| Daddy making her laugh |
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| Meeting my friend! |
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| she has such a personality lol |
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| she can say DADA |
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| she loves bath time! |
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| Halloween with daddy |
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