Long Long - a true miracle

Baby Long was abandoned as a newborn, a tiny little guy with a big cleft. His orphanage sent him to a special home that nurtures babies with clefts until they are big and strong enough for surgery. But little Long was often sick. He didn't get bigger and stronger. He had repeated bouts of pneumonia that usually landed him in the hospital, where doctors tried their best to help him get better. He would get a little better, but would get sick again and again. Finally, in September of last year the doctors realized they could do no more. His little lungs were just not strong enough, and his trachea was damaged from repeated intubations. He was on respiratory support and they could not get him breathing on his own again.

At that point (when little Long was almost a year old), the special cleft home contacted us and asked if there was any way we could accept him for hospice care. When we saw the photo below, we knew there was no way we could say no to this precious little boy:

Right at the time when we said we'd be happy to try to help, the doctors were successful in withdrawing the respiratory support. Little Long was breathing on his own again! Unfortunately, the doctors said it was pointless to ever hospitalize him again. They told us that if he got sick and needed intubation one more time then it was unlikely he would ever be successfully extubated again. So we transferred him to our hospice, planning to provide palliative care, but hoping against hope that he might somehow NOT get sick, and gain weight and strength until he could be healthy enough for cleft surgery. Here he is when he first arrived, alert and spunky, but still very frail. He was 11 months old and weighed just 9 lbs.

In October of last year he celebrated his first birthday, and as each day and week slipped by, we hoped and prayed that he would stay healthy. And he did. By December he had some off and on respiratory infections and used supplemental oxygen, but mostly he remained stable. He started to gain weight, but had a long way to go to catch up! We began to feel more confident about treating his infections at home, but when we had a chance to ask some international experts for help, we jumped at that chance! The international hospital in Beijing has a foundation that helps children like baby Long, and they agreed to evaluate and see how they might be able to help.

After his initial evaluation, the pediatricians there suspected he was aspirating milk during feedings, and that might be the cause of his recurrent pnuemonias. They recommended inserting a g-tube, so that feedings could go directly into his stomach and there would be no risk of aspiration at all. Surgery for the g-tube was donated by their foundation, and little Long came through that just fine. Here he is in January recovering from that:

The g-tube surgery did not end all of his recurrent pnuemonias, but his condition did not worsen. By spring we were all rejoicing that he has made it through the winter, and started to look at options for repairing the cleft. Unfortunately, because of his prior respiratory issues (and difficultly with extubations) none of the hospitals in Beijing would accept him for surgery.

So we began looking outside China, and were able to make arrangements with LEAP Foundation in Dallas, TX for Long to travel there for surgery. We have worked with LEAP in the past, and are incredibly grateful for the amazing craniofacial transformations they are able to do for little ones like baby Long. Here he is in May, just before he flew to Texas:

Once he arrived in Texas, two very generous host families met him at the airport and welcomed him into their homes. Little Long's struggles were not over, though - his first few weeks in the US saw more illness and hospitalizations. Many tests were run and other problems were ruled out. Ultimately, doctors there realized that he was still aspirating, even though he has no oral feedings. His reflux was severe enough to cause aspirations and lung infections, even with the g-tube. Once that was under control, little Long finally stopped getting sick so often. Surgery was scheduled for mid-July.

Incredibly enough, just one week before surgery, Long came down with croup and surgery had to be postponed. But he has recovered from that and is doing well. His host family sent us this photo to show how well he is doing now:

Little Long's surgery has been re-scheduled for August 30th. We hope and pray that he will remain healthy and surgery will proceed without further delays. We can hardly believe this little guy has come so far and beat such incredible odds. We know God must have big plans for his life!

UPDATE: January, 2012 update can be found here.