No News Really is Good News

Where is Zane today? Well, the lesson of the week for me has been that 'no news is good news'! The less my phone rings, the better. I had a meeting this past Friday to discuss Zane's prognosis and his new plan. Many had such high expectations of Zane not doing well when he was taken off the ventilator because he did so poorly last time he was taken off, that we hadn't really made a structured plan for if he succeeded. But, succeed he did!

I think that this meeting was the most refreshing meeting in regards to Zane since the time I found out his heart was normal on the fetal echocardiogram! Doctors cautioned that he is still high risk for having a severe episode of apnea that would cause him to pass away, or for being unable to retain enough nutrients to thrive properly, but they also had a greater sense of optimism than i had ever received. With a big smile the doctor explained that 'while those severe things could happen, they haven't yet, and we don't know when or for sure that they will happen. So right now what we have is time, which is great!' After i heard this it was hard for me to maintain focus, i wanted to stop him mid-sentence just to say 'Wait! Good news? Is this really good news about my son? Am I actually hearing that we are going to start moving in a positive direction? Can I actually be a little excited now and not have the thought of Zane's death constantly looming in the back of my mind?" So many miracles and amazing things have happened with Zane but this is what I have been waiting for, the moment when we stop preparing for his death, and can realistically begin preparing for his life! Oh what a blessing!

The road ahead is definitely a difficult one and it could be months before we are able to bring Zane home, but at least we now have a goal we are working towards! Our hope is to increase his nutrition, figure out what Zane will tolerate eating best that will allow him to grow big and strong, and hopefully in effect decrease his episodes of apnea. Since removing the tube we have found that Zane's apnea is most often related to an obstruction in the airway (usually a build up of mucus he is unable to cough up), as opposed to the inability neurologically to breathe consistently. He seems to have a few times where he will stop breathing b/c of a neurological problem but those episodes have all been very short, and he has recovered from them like the champ he is!

Today what I know about Zane is that after we took his tube out he lost weight b/c everything he was doing required more calories, and for the most part he was receiving just enough breastmilk to keep him hydrated. However, we have now increased his feeds and nutrition. Zane is gaining weight, and has not had an episode of apnea, emesis, or a bradycardia in 2 days!!! These things are such a huge blessing to me. This is why no news is good news! As opposed to earlier this week when his heart rate was dropping down as low as 11, yikes stripes! Each day is really such a blessing and no news has truly been the best news of all! Please continue to pray specifically for zane to grow, handle feedings well, breathe well, full resolution of his brain bleed, and healthy mental and physical development! Thank you all so much