Chloe's journey

Feeding Chloe Update  I just wanted to post an update on feeding chloe.  Ever since her heart surgery, she has been eating an entire jar of baby food each sitting!! We feed her 1-2 times a day right now. She's finishing that jar in 20 minutes or less with no puking or choking! This is such an improvement and it gives me hope especially when we resume feeding therapy. As for taking a bottle, no progress but she's 8 months old so I'm not too worried. We will be working with a sippy cup soon though .   Another update is the tube feedings. Before the surgery we we're slowly making our way to bolus feeds but we did put the compressions on hold just in case she didn't tolerate it.  3 days ago I compressed her feeds again and she's tolerating it beautifully .Now she's at a higher rate and gets 6 hours off the tube instead of 4! My plan is to take her off the tube 3 times a day for 2 hours. Before connecting her back to the tube I will first feed her by mouth. If

Chloe's recovery journey Chloe is making me so proud with how well she is recovering from this monster surgery. I bet shes doing better than I would ha ha. I just want to document her progress so one day when shes older and about to go through another surgery, I can show her this blog and she will know that even from the start, she was a strong little lady! I will never have the words to explain all of the emotions we are going through as a family on this heart journey.  Its scary, amazing, strong, emotional, and more.   Day 1: Chloe was able to be exubated right after surgery. She was awake but drifting off a lot. Very sedated from narcotics and the anesthesia still in her system. She was not fed at all today as eating too soon can cause problems. She would probably try to throw up which can be dangerous with her being on the vent and so sedated. I don't think she knows who we are or whats going on at all. The important thing is she successfully made it through open heart

Before an after Tetrology of Fallot repair ****warning graphic images!!*** Just a warning, I am posting graphic images in this post because I want to share what the truth of what this looks like. Also, I am saving this just in case I lose these images-at least it will be saved here too! I will be posting Chloe's actual heart before and after as well as pictures of her. Chloe before and after: Before her repair, she had a BT shunt and stents so her normal oxygen saturation's were 75-85. If she was crying her sats would drop to the 50s. This is why she wasn't allowed to cry! She was always dusky but turned very very blue when her sats were in the 50s. Now her normal oxygen saturation's are 95-100. That's the same as you and I! Her sats when shes been crying hard for over 10 minutes barely even reach 88. That would happen to you and I if we cried very hard for an extended period of time too. Its amazing isn't it? Now she will have much more energy, be happ

Open Heart Surgery   Chloe finally had her open heart surgery to repair tetrology of fallot. She did amazing and probably will not need another heart surgery for many many years! She will still need yearly cardiology checkups with echos and will need valve replacements through her life but the main, big monster surgery is finally out of the way. She is the strongest little baby I know- stronger than me in many ways. I hope she is proud of her scars because it shows the battles she fought and won all before she even turned one.    For some reason I actually was not nervous about her going through this. I had a sense of calm the entire time. It might have been God because she had and still has so many people praying for her. I just feel like there is a reason shes here. Shes going to make an impact on this world.   After surgery, her surgeon, Dr.Langley, talked to us. Chloe's grandma Loretta and great-grandma Tammy were with me. Dr.Langley explained how surgery went and the futur