Chloe's journey

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 hear...

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 wen...

Surgery Cancelled Well, bad news. Today Chloe and I got to Post Op and we received some news. Her surgery has been cancelled. The worst part is we were told this after she got labs and testing done. Her surgery was cancelled because of a big emergency case. I am trying to be positive because at least Chloe is stable enough that its ok and I am grateful that she wasn't the big emergency case. Still, this is upsetting because this is the 4th time her surgery has been cancelled. Kody already called of work and we got everything all prepared. I should be getting a call tomorrow with a new date. I am also worried that she will get sick again as it is cold and flu season, and that will delay her surgery even further. I appreciate all the prayers and please keep praying because she should be having her surgery soon still. Her surgeon told me today that she is a priority and that he wants her to have her surgery sooner rather than later so that is good. Im p...

Open Heart Surgery Today was such a busy day... a couple of appointments for Chloe, cleaning, etc. Today was also a bit life changing. We now have a date for Chloe's open heart surgery.  When she was born, we were told her full repair would be between 4-6 months old or when she is at least 13 lbs. Her surgery was pushed back 3 times because she kept getting sick! Now at almost 7 months and almost 15 lbs we finally have a date!!. Chloe will be going for a cardiac catheterization in 3 days, November 29th so the surgeon will have the correct measurements and pressures of her heart. The actual surgery date is set for December 7th, a Friday and the day before her dads birthday.  We are anxiously awaiting and counting down. We have been waiting for this day for way too long. Now its not even 2 weeks from now. Just 11 days!! I am still in a bit of disbelief. I keep thinking she's going to get sick again and it will push it back even further. I know I need t...

Chloe latest Cardiology Appointment  Chloe had her biweekly cardiology appointment on Friday. This appointment was different though. She had her usual Echo, EKG, pulse ox check, height and weight. But this time, her cardiologist said "Has the surgical team called you yet?"....nope?  "If you do not hear from them by monday morning, call the surgeon on tuesday. Here is his personal number."    On wednesday, the surgery team discussed Chloes case. Her full heart repair will be soon! We all want her to have the heart repair before cold and flu season or if she gets sick, it pushes the surgery back another 6 weeks!  So this thursday, Chloe and I meet with her heart surgeon.  The nerves have officially begun. Yes she has already had an open heart surgery and a few heart catheterizations, but the full repair is much more intense. Much more involved. She most likely will need to be put on a heart-lung bypass machine. I pray that the weig...