Nehemiah is doing amazingly well. We are actually hopeful that we will go home soon. Just a few days ago they were talking about transferring us back to the NICU in Mobile, but now they are talking about educating me and just sending us home.
Josh and I are amazed and humbled at how God is working in our lives.
Nehemiah is recovering from the heart surgery quite well. The surgery did not go as well as we had hoped, but it was still good. The surgeon had hoped for a better result from the PA (pulmonary artery) Band. He was not able to restrict the flow of oxygenated blood into the lungs to the degree that he had hoped, but he was able to make things better for Nehemiah.
Nehemiah is breathing on his own. He came off of the respirator over the weekend and was placed on a nasal canella. Yesterday, he came off of all respiratory assistance, and he has done great.
Today, the nurse turned off Nehemiah’s bed. This means that he is not receiving any heat from the bed. He has tolerated this great. We tried this over the weekend, but he couldn’t tolerate it. His core body temperature dropped, but he has done great today. His temperature has been good at each assessment.
Nehemiah’s only tube is the nasal feeding tube. He is trying to take a bottle, and he is trying to learn to nurse. But, both of these methods wear him out before he has taken enough food to grow and not go hungry.
So, we are looking at going home with the feeing tube.
The doctor and nurse practitioner are looking into methods of home health so that we can just be released from here to our house. Part of this will be teaching me how to use the feeding tube and introducing me to a nurse that will make regular home visits.
Josh and I are ecstatic and scared. We are thankful to God for the mighty work he is doing in Nehemiah’s life. Nehemiah has surprised the doctor’s each step of the way. It is because God has chosen to work in Nehemiah’s life this way.
Thank you for petitioning God with Josh and I. You have blessed Josh, Nehemiah, and I greatly. Thank you.
The next obstacles that Nehemiah faces are learning to eat, getting strong enough to eat all of his food through his mouth, growing and gaining weight, and a hernia. If the hernia does not heal or go away, he could be facing another surgery at some point. This will mean going on the respirator again, and each time he goes on it there is a fear that he will not come back off or his lungs will be damaged too much to come off again. The doctors and nurses tell us that all of these obstacles are common for babies his size and especially with his condition, but they are large obstacles for Nehemiah, and the doctors do not really give us any hope that he can do it. We know he can not by himself, but if God chooses that it is His will for Nehemiah to do it, he will. We are praying for our little man and the obstacles he faces. We ask that you please continue to pray with us.