On one hand, it feels like sooo long ago that we were living in the revolving doors of the hospital, hoping and working so hard to bring Truitt home. On the other hand, the hospital days feel as fresh as yesterday. But the reality is that Truitt has been home about 3 1/2 weeks now. He no longer feels like a preemie, but a newborn who just needs a little extra care. He now weighs over 7lbs 10oz, and has outgrown one of his outfits. (I hate it when they start doing that!)
In the 3 1/2 weeks that he has been home, Truitt has seen his pediatrician, midwives, orthopedic surgeon, general pediatric surgeon, plastic surgeon, occupational therapists, chiropractor, dentist (for tongue tie revision), and a cranial sacral therapist. And tomorrow we will add to the list lactation consultants. So while we are taking care of this precious little man at home, we are still working with various doctors and specialists to try and find a diagnosis/cure for the swelling in his hands and feet.
So far, the plastic surgeon is the only one that has had any confidence in what she thinks it might be. She thinks that it is a malformation of his capillaries (a form of hemangioma in his tissues)- basically too many capillaries. If that is what it is, they usually absorb back into the body over a few years time, and will mostly fix itself. This would explain why the tips of his fingers were the first thing to shrink and regain normal coloring, instead of the areas closest to his heart improving first. She was uncertain if there is maybe something else lymphatic related going on in his feet as well, as they seem to be worse than his hands now. It is odd that the swelling/discoloration is so symmetrical, which rules out the things that would usually cause congenital swelling like this (vascular occlusion, amniotic bands, etc.). We think that his hands are possibly coming down faster because he moves them more, and the bigger he gets, the more he will kick his legs and feet around, and hopefully speed up their healing some. So for now, we just wait and pray that they continue to get better, and continue massaging him as much as possible to help move the fluid along. In the meantime, the surgeons here are consulting with pediatric vascular specialists, and congenital hand specialists out of state.
We are thinking now that the swelling in his hands and feet is something separate from the hydrops. It’s possible that the hydrops may have caused the swelling in the extremities or whatever caused the swelling in the extremities caused the hydrops, or they could be two separate things totally unrelated to each other. The swelling in his lungs, abdomen, and the rest of his body caused by the hydrops has not returned, and he appears to be completely healed from the hydrops. The swelling in his feet has increased some over the last two weeks. We have been told that the swelling could fluctuate, but it still makes us nervous– especially since we don’t know what is causing it in the first place and therefore don’t know how to treat it.
He had his tongue tie revised about a week and a half ago, so we are now able to work on getting him to nurse more and take the bottle less. Leisel was not quite prepared for the learning curve that this would have. We spent 6 weeks teaching him how to eat from a bottle, and are now starting over teaching him how to eat from the breast. Having him be able to solely nurse and not need the bottle is going to be so helpful to our family as it will free up a huge chunk of Leisel’s tied-down time with the pump.
- Tongue tie revision went smoothly
- His direct bilirubin levels came back low even though he’s been off the medicine for it, which rules out the concern for liver disease
- He is getting stronger and nursing better
- Swelling in his hands is improving
- For the swelling in his hands and especially his feet to go down quickly and stay down
- For wisdom for the doctors as they consult and try to determine the cause for the swelling in hands and feet
- That he will become efficient at nursing, and not need the bottles anymore