Yesterday Tyler had an amazing day. We ab-libbed feedings all day yesterday. We took the nasal feeding tube out and just waited for him to wake up on his own to start the diaper change process and to nurse him. He visited with Rachel for a short period. She thought she'd help with a diaper change. She was ok until she wanted me to hold her and pitched a fit. We expect this and are prepared for a strong willed jealous child when we do go home..
Most preemies shut down for 48 hours after an eye exam, so we didn't expect too much from him yesterday. He had an eye exam on Wednesday. If anyone has seen one of these exams, it looks like a military torture procedure. They clip the eye lids open, stick a probe in, and shine bright light into dilated eyes with out being sedated. So it's completely understandable that a baby doesn't want to wake up for a long while. Tyler was a little sluggish waking up in the morning and early afternoon. The evening and night feedings, he woke up on his own and opened his poor little eyes for me. He only lost 50 grams yesterday. It sounds like everyone expected him to have lost more. They did feed him by tube last night so I could sleep and today we are ab-libbing again.
Already he had a good awake time and nursing time at 10am this morning. I'm already thinking about signing him up for burping contests. He let one out and I swear it had to been someone else. So most of my days will be spent at the hospital so when he is hungry we can nurse him. Sometime soon I'll even be here at nights to establish night nursing. Once we are comfortable with him nursing well, we can introduce a bottle so I can get out of the hospital and someone can feed him with a bottle.
We've kinda brushed over a couple of important topics the last couple of days. His head issues and to shunt or not as well as discharge. Right now surgery is on hold indefinitely. His most recent MRI clearly shows smaller ventricles and fluid movement to the outside of his brain. Again the fluid is produced in the ventricles, goes down the spinal cord, back up the spine, and absorb in the area between his brain and skull. These changes are very encouraging that he could resolve this without surgery. He will get another MRI next week to check on the progress.
He also has a two cysts forming in his brain. These are normal after have a bleed in the brain matter itself. When bleeding occurs in the brain matter, a cyst forms to clear out the blood and afterwards it becomes a hole. The damage to this area was done when it bled and brain tissue won't grow back. They are small, but we will also watch them to make sure they don't get too big and block the fluid path again. He is not out of the woods for a shunt yet, but we are not going to put one in until he clinically needs it.
The last couple of days, we have been focused on getting the rest of the discharge list completed. He came off his caffeine this past Monday. So this coming Tuesday we can start the A and B countdown. He has to go seven days without any apnea's or bradicardias. These have become very infrequent and mild over the last 7 days so we are fairly confident that he will accomplish this in a few weeks. Tyler also has to be taking all his nutrition by mouth, either nursing or bottles. We are currently working on that and expect to have that figured out in the next week or two. He can manage his own body temperature so check that off the list. We are seriously looking at Tyler being able to come home in the next 2 to 3 weeks. Ben went home this weekend to set up the cradle and swing. General a baby is coming home things that I wasn't able to do before I went into the hospital.
And it's hard taking pictures of Tyler while holding him. I'll try to get one today when he is awake if I can.
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