Dear Family and Friends,
For the first time in my son's life, I am proud to say Everett looks healthy! While I can't put my finger on what is making him look so good, Zac and I both agree that there is something very different about our little boy...maybe it's a healthy glow or fewer wrinkles, I don't know. But whatever it is...I hope it never goes away!!!
It has been 10 days since his surgery. After swelling up so much that every inch of his skin was taught and shiny (and getting nicknamed Marshmallow Man by the nurses), Everett is finally looking much more like himself and that precious face that has stolen my heart is gazing back at me once more. His eyes are open and remain a beautiful blue, his arms are swatting the nurses, and his legs are kicking his blankets loose. All signs point to him feeling better...and it shows!
His ileostomy looks great (even better than I anticipated) and is putting out stool. It is a great relief to know that everything is connected properly. His abdomen is much less distended and is only slightly swollen from the surgery. His incision looks healthy and is healing well. This afternoon he started on breast milk again...1 ml per hour! The necrotizing colitis is pretty much resolved and his lab values are normalizing. The doctors are pleased with his progress.
He is on a new ventilator called a NAVA vent (Neural Acquired Ventilation Assist). This brand new machine has the technology to actually sense when Everett's respiratory center in his brain is telling his diaphragm to take a breath. Then it quickly analyzes what assistance he might need and provides it. The beauty of this vent is that it will not give him any more or less help than he needs. And it leaves most of the work up to him. He has been on it for three days and is doing really, really well. He is to the point where he could be taken off the vent and allowed to breathe on his own, but we've decided to leave him on until Tuesday, when he will likely have surgery on his eyes.
Everett has developed Retinopathy of Prematurity. The doctors have been monitoring him closely for weeks, but with the high levels of oxygen he received last week, the disease has progressed and now intervention is required. On Tuesday, he will undergo laser eye surgery to remove part of his immature retina and allow proper growth of the blood vessels in his eyes. Without this procedure he has a 50% chance of blindness. With the surgery, those chances drop to less than 10%. His new eye surgeon is the only doctor in the country who operates exclusively on babies and comes very highly recommended. Again, we are thankful for small blessings and that so many great doctors are available to us here in LA. After the eye surgery, he will be able to come off the vent and breathe on his own.
His weight tonight was 4lb. 1oz.! Of course, some of that is still residual fluid from his surgery, but he is defiantly plumping up nicely. He has already captured the hearts of his nurses and doctors with his one-eyed stares, non-stop sucking on his vent tube, and countless expressions. His personality hasn't changed at all. We still do not know how long he is going to be in LA. His eye surgeon would like to keep him here as long as possible, so we may be looking at three more weeks at least. We are getting the hang of the hospital, getting to know the staff, and are feeling a little better about the whole situation. While we were disappointed to have to leave SV, we are thankful for the care that has been provided and are relieved that he is feeling so much better.
We are staying with my aunt in La Crescenta, which is about 30 minutes from the hospital. She is a very gracious host and we are so thankful that she has taken us in!!! We love getting emails, phone calls, and texts from all of you at home. In fact, during my dark moments, I read the encouraging emails many of you have sent and my spirit is renewed...so thanks for all your love. We feel it even from afar!!! We are making baby steps forward and that is the best feeling in the world!
The Bollinger Family
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