So, Noah is doing pretty good. He enjoyed seeing his sister and being held by his daddy this weekend. Nick said Noah studied him for about an hour before dozing off to sleep. Those two have a lot of catching up to do.
The latest with Noah is that they are sure that he will be getting the g-button feeding tube. You can google it. Basically it is an opening where Noah can get his feedings by tube directly into his tummy. There are a lot of good things about this for Noah. Most all heart patient babies get these, there are many reasons for that. Basically heart patient babies need more support in feeding because their hearts are working so hard in general that they have a hard time digesting without having heart function drop. So, with Noah being 4 months old already and him having a large aversion to anything oral right now. The best step for him is this button. The catch is that they are trying to decide if he needs a fundoplycation or not. (google it as well) This will help him to not throw up. (Chanci Henderson, if you are reading this, I know you are an expert, so I hope you don't get offended by my lack of proper spelling or words usage) haha. I know a lot of people have had terrible times with this, but we are at a place where this must happen for Noah to go home and begin to thrive. We must trust our doctors and they are so incredible. We do know that we can begin to have a normal life for the 4 of us soon if he gets this done. We could possibly be home by the end of the month if things go ok. So, I ask you to pray for wisdom for our doctors as they do one more test tomorrow to decide on the fundoplycation. Please pray for Noah. He has had a stressful few days. This whole weekend he has been fussy and uncomfortable. There is some possible fluid build up on his right side, so he will get an xray tomorrow to check. He needed to go back up on oxygen today to help get his saturations up. He de-sats a lot when he is mad and uncomfortable, so they gave him some extra support. They got a PIV in since his other one quit working, so they can continue IV meds when needed. He got to get some stuff off his head today. All the monitors and the IV came out that was on his head. Please lift Noah up so that he can recover quickly from the gbutton surgery (final surgery until he is 3 years old we pray) and then we can make our way upstairs to begin our journey home. Truly, I am just humbled, terrified and excited all at the same time. I cannot even begin to imagine what life will be like in a matter of weeks. I just know that even with a button, we can find a new normal. Noah will be able to wear clothes again, work on tummy time, play time, he can learn to eat cereal, puree's and other soft foods, learn a sippy cup, be held as much as he wants, get constant love and attention from his sissy, the 4 of us CAN BE TOGETHER. Noah loves to watch his daddy and sissy. He will just be thrilled when we get home to see them interact and laugh. We will all be together and we will all learn together. I will update here as we know more. Lots to learn before we get home. Please pray for strength and peace of mind as we learn. Pray that Nick can get the amount of time off work to learn and bring noah home when that time comes. Pray for all the details to work out, for us to be clear minded and refreshed as we begin the next phase of this journey. Also, pray that things at home will be ironed out and worked out for our arrival. There are things that need to be done. Our home needs a good deep cleaning, we have some things that need to be sold, etc. So pray for stamina for us as we prepare. We are still weeks out from getting anywhere close to home, but my goodness the word home is just a miracle to even be saying right now. Praise God!!!! Thanks and love to all!
shaina
