Hold on… that is exactly what we have been doing for the last 5 months, even longer since we knew Madi might have some problems we may be presented with when she was born. I remember feeling so devastated after they said there may be something wrong with our baby girl. All the joy we had for the pregnancy seemed to go out the window, replaced by fear. Of course we were still excited and thanked the Lord for blessing us with this precious life, but so nervous, anxious and unsure of what it would be like when she was born! Shortly after she was born, we were so optimistic of Madi’s prognosis and if you have followed our updates from the beginning you know that it seems like it has been one thing after another. Still we praise the Lord for every time He has continued to bring Madi through every situation and He has brought us through as well. I was talking with Matthew the other day and just mentioning the ways God has had his hand on Madi through this whole journey… I will try and explain some of what I was telling him! When we found out Madi may have esophageal atresia it laid the groundwork to have extra hands present at her birth, ready to offer her more care than the typical newborn. Had this not been the case, since she seemed perfectly healthy at birth we would have treated her like any other newborn, only to have her eat and aspirate, and possibly die during that episode. That was the Lord’s first provision for our sweet Madi. In the OR when she was born they passed an NG tube down into her stomach, knowing now the way her anatomy was, it is only by God’s grace that they didn’t puncture her lung when they passed the tube. The Lord allowed Madi to breath on her own when she was born with little to no assistance, had she been in distress and not been able to breath we would of had no way to intubate her safely and assist her with that… another provision! We could list a whole page of things just like this where the Lord has constantly had His hand on Madi. In ways we can not even understand or don’t even see He has always protected her and brought her through. We pray that He continues to do that!

Now for our current situation…Madi has been intubated, sedated, and paralyzed since Sunday 11/16. They have decided the best option for Madi at this point is to go ahead and have a trach placed tomorrow. This was never what we wanted for Madi from the beginning, but we trust the Lord and he has more or less left this as our only option. The biggest concern with placing a trach is that it will deteriorate or damage her repair, our constant prayer will be that this is not the case. It will definitely be a life altering change for Madi to have this new “accessory.” The benefits of having this is that she should finally be able to work towards coming home if everything goes well. Even if she still required the support of a ventilator we can come home with nursing care and care for her AT HOME. She may not require the ventilator and may only need cpap. She can receive that as well from the home ventilator. The best scenario would be that she only needs the trach to stent open her airway and won’t need any additional support. If she can work towards this goal it will be wonderful. Her type 2 cleft will be put on the back burner for now until we decide it is a good and safe time to correct that, I know we will be in no rush to take her back to the hospital! I know for those looking in this situation must seem overwhelming, and trust us it is! Our desire is for others to learn and grow through this experience with us! So many times through this journey I have hated the word “normal” because that is something the world would consider Madi not to be. I have stressed and said over and over that Madi is exactly the way God intended her to be, He made her special, one of a kind, just like each of us. There are so many children in the world who may not fall in the parameters of normal. I have only scratched the surface of what their parents must go through or how they feel when caring for their child. If I could encourage everyone of one thing it would be to be more accepting of others. Pretty soon we will be sharing some pictures of our beautiful baby girl with her new “accessory.” Feel free to ask us questions or research it. We don’t want her to be scary or different, we want others to embrace the way God made her. Our eyes have been opened to so many different ways the Lord can make children and I hope that Madi may help even one of you to reach out to another family you may pass that’s unique and encourage their parents. I know having someone encourage me or be kind to Madi will be very important to us once she is out and about. Everything Madi will have can and may be temporary, or she may need them for her whole life, but our goal is to make life as normal as possible for Madi. We know that God chose us to be her parents for a very specific purpose and we can’t wait to enjoy this journey with her! Please pray for her as she has her surgery tomorrow to place her trach, she will be paralyzed and sedated at least for a week for this to heal so this is a critical time for her. We are so blessed to have, what we think are, the best surgeons in the world! Everyone loves Madi and excited to see her continue to grow and improve!

I am going to post some pictures of different times Madi has went to the OR so it may help you understand the steps along the way!