Today marks 3 months since Madi had her second repair surgery! It seems like so long ago some days and not on others! We have had a busy week and will be pretty busy in the weeks to come. Big news for this week, Madi is off all of her drips! That means the only medicines she is getting are being delivered through her J tube. She had a new, longer J tube put in on Tuesday because she kept having problems with her other one leaking and so far this one has been much better! They have slowly started weaning some of the medicines she gets through her tube and it will take us several months to get her off of those. Matthew and I have started some of our trach training. We each have to do at least 2 trach changes (taking out her trach and replacing with a new one) before we will be able to come home. We are being trained on the ventilator tonight and meet with several nursing agencies next week. We have lots of things to get set up and arranged at the house to accommodate Madi and all her equipment. We are very excited for the possibility of coming home soon, they haven’t given us a date and we haven’t asked. We just know as long as things continue the way they are it is at least on the horizon. Madi will come home in an ambulance and we will have 24 hour in home nursing for at least a little while, but she will require nursing care most of the time if not all. The last almost 6 months has been such a roller coaster. We are so thankful that Madi is finally doing well. Some days are good days and some days are bad days. We have definitely watched our child come way to close to death many times, way more than any parent should have to experience. Some days are so hard, this definitely would not have been a journey we would have chosen. There are days I wish I could just go back to the hospital and have her and come home 2 days later and everything be fantastic. I feel like I missed so much of that experience and joy when I had her. I would be lying to say I don’t have bad days and struggle, but that is exactly why we need God and His help through this trial. I didn’t know until this week, that we would have to bring Madi home in an ambulance. I was kind of sad not to be loading her up in her carseat and finally driving away with my whole family in the car, but we will be thrilled to have her home so none of that will matter in the end.

So in the next few weeks we will be learning lots of new things! What to do in case your baby turns blue ha-ha. Not really funny, but not something I pictured learning. We will know how to be able to give Madi rescue breaths, CPR,  change her trach in an emergency if it comes out or if it is plugged with mucous. We won’t be leaving the house unless we take half the hospital with us, so don’t expect to see us at the grocery store just browsing lol. I know we will adjust to all these things, after a little bit of time. We have called the power company to let them know about the ventilator. We have talked to numerous nursing agencies, had a home check, been reading up on our insurance, trach training, along with other things. These are exciting times, never what we expected, and I am sure the day we bring her home will be surreal. We will probably take a life vacation for a few days and enjoy having all 4 of us home, and the company of a nurse.

We are still so appreciative of all the prayers for our family and Madi! We have especially been amazed by everyone’s selflessness in giving to make sure we have made it through all this. The hospital hasn’t sent us one bill yet… they are probably ordering some more paper to print it lol but people have went out of their way to make sure Hudson has a fantastic Christmas, or we have food or gas money. We get anonymous cards all the time or small blessings from people we don’t even know! Just know we pray the Lord will bless you all for all your prayers and giving. We are so blessed to have so many who love our family and extended family! God has used so many to be a blessing to us in so many ways and we can’t thank you all enough! We can’t wait to share photo’s of our sweet Madi at home… we will keep you posted as we know more! Exciting times!!