Wednesday, January 14, 2009

Day 11--Baby Steps

Dexter was switched to a low-tech bed today--an "open crib" like all the healthy newborns get. He's still attached to monitors and some oxygen and a feeding tube through his nose, but comparatively, he seems so easy to pick up now!
Dexter's mini-miracle of the day was progress in eating just in time. The developmental therapist came to his 9;30 feed today to do the oral exercises she'd developed. When she stuck her finger in his mouth to stimulate his sucking reflex, she noticed "marked improvement" and decided he was ready to try sucking a little milk again. So she called the speech pathologist who came with a student in tow and the team got to work on a "finger feed." First, they thickened his milk to nectar consistency and put it in a syringe with a skinny little tube coming off of the end. The developmental therapist taped the little tube to her gloved finger and the speech pathologist got her stethoscope ready to auscultate his swallows. She stuck her finger in, and he sucked a little and swallowed a little and didn't startle or choke or desat too much. He managed to get 4 ml down before he got the hiccups. They determined that coordinating swallowing while hiccuping was too big a challenge, so when he didn't recuperate from his hiccups after a couple minutes, they called it a wrap and gavaged the rest, as they say. I thought, "whew, he did 4 ml and his full feed is 56!" But the nurse and speech pathologist and developmental therapist were all very encouraged at his progress, so I reminded myself that baby steps in the right direction are fantastic. A little later when the attending pediatrician came to talk to me, I realized just what a miracle this little step of progress was. She told me that the neurologist had looked at Monday's EEG and found essentially the same thing she saw from the other one done when he was so sedated--he looks neurologically immature. No one knows just what that means for his future, but she was very encouraged by the progress he's made since birth. She said that as they had talked about Dexter, they decided that his brain abnormality would mean he would need a G-tube surgically inserted to send him home, but that after his progress with sucking this morning, they felt they could hold off on the G-tube and give him a chance to learn to eat orally. She said it may take him a couple weeks or even a month to get to the point where he can take his full feeds orally and go home, but based on today, he's making progress in that direction and they are going to be patient with that. Aaron and I felt so relieved to hear that a G-tube is not immediately neccessary. Thank you for your prayers--I know that the Lord is answering them. Let's continue to pray that Dexter will have the energy and coordination to suck, swallow, and breathe. And that his parents will be patient with his extended stay in the NICU--we want our sweet little guy home so bad!!

And now I want to thank our heroes of the day--Aaron's classmates who came to the rescue during cranky hour. Xander actually fell asleep next to me today, but when Elodie woke up, which woke me up and then Xander, he was apparently not done napping because he was in quite a rage. Of course, I needed to pump, meaning my needy kids got far less attention than they needed, so when Aaron walked in 15 minutes later, I was putting milk in the freeezer and both kids were screaming upstairs. I warned Aaron that he might not want to be home right now, but he just said, "I have something that will help," and pulled out two giant presents all wrapped up. When I called upstairs, "Dad's home and he has presents for you, " the crying stopped. It made their day. THANKS for your thoughtfulness and generousity!!! We ALL really appreciate it. I'll let this picture speak for Xander. As for Elodie, I didn't catch a picture of it, but when it was naptime, she wanted her new baby brother doll in there with her and threw her other dolls out. "He's so soft," she crooned in her sweetest little voice. She loves it.

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