Hope and Pain

"The Lord said to him, 'Who has made man's mouth? Or who makes him mute or deaf, or seeing or blind? Is it not I the Lord?'"
Exodus 4: 11

Well today (Wednesday 7-8-09) was a day of hope and pain for Tara, Laura and I. I love and hate days like these. It actually started yesterday (Tuesday 7-7-09). Laura got to go for an unscheduled car ride, so daddy could make an unexpected run to the eye doctor. Nothing major, but I still needed to go. The long and short of it is that I have to put a bunch of eye drops in my eyes during the day, and some goop in my eyes before I go to bed each night. The goop is a little weird.

Then Laura's Granny came over yesterday evening (7-7-09) to play with her. This allowed Tara and I to get out and run an errand and go to dinner. Later yesterday evening we did the tummy time exercise again. It went very well. Laura was able to hold her head up and turn it and lay it back down with pretty good control. This was enough to have us just about jumping out of our skins in excitement. Then she amazed us even more by actually scooting on her belly just a little. The end result of that, was that she actually spun herself about 90 degrees. It was just so amazing to watch her do this all by herself, with no help from mommy or daddy.

However, she was not yet done with us. A little later when Tara was putting Laura back in her crib, Laura (who was on her back at this point) lifted her head again. This, in and of itself, is not that big a deal, but Laura did it right when Tara was about to adjust the sheet the she was going to swaddle Laura in. It was as if Laura had figured out what was coming and decided to help Tara.

Today (7-8-09) Early Childhood Intervention came by to do an evaluation. After many questions, and some hands on work, they determined that Laura is right where she should be for a baby of three weeks and three days old. We decided that our goal for the next 6 months would be to get Laura off of her NG tube, and to be feeding either by bottle or breast (with some rice cereal being worked in, with our Pediatrician's approval).

They also gave us some things to try with Laura to help her figure out her feeding. These included stroking her cheeks. This is to get her to pucker in preparation for the feeding. They also suggested that we gently tap around her mouth to further encourage the sucking motion. This made Tara and I very happy.

Once again her Granny came by to play with her for a little while. Then this evening we did the tummy time exercise. Again, she amazed us by picking her head up and turning it even more smoothly to the other side than she had done last night. She did this a couple of times for us. Who would have thought that such a simple thing would have brought us so much joy and excitement.

Then about an hour before one of her feedings she began her sucking motions. This caused Tara to lactate before she was ready. We jumped on the chance, and breast fed Laura. It was one of the best experiences that we have had yet with breast feeding.

So at this point you are thinking I see the hope Laura (a Down Syndrome baby) has given you, where is the pain? Well after the breast feeding I changed Laura. No big deal. She seemed much happier (which is normal for her) after her diaper change. We then moved her NG tube to the other nostril. This really sucks. First, you take it out. Not that big a deal. She fusses a little, but calms down once it is out. Unfortunately, you have to put it back in. Then NG tube runs through the nose to the stomach. Laura does not like this part of the procedure (not that I blame her). It is one of those thing you have to do, even though your baby does not like it. Our hearts break every time we have to do it, because she hates it so. The only thing that gets us through it, is that we know it is best for her. Otherwise it is a gut wrenching, awful experience that I HATE having to go through.

The best thing about the NG tube is that after placing it, and taping it down, is that we get to hold Laura afterword. This calms both her and us down. We will be so glad once that thing is gone.