Unexpected Update

This is an unexpected update- not just because I already updated the blog once today, but because of the reason for the update.

I mentioned the car seat study in my last post, and how Dylan failed his first attempt. The plan was for Barb and I to meet with the nurse practicioner covering the schedule on Monday to go over how to manage a preemie in a car seat and to do his evaluation for a second time then.

Today, when we arrived at the hospital, we noticed something odd on his chart. Normally his vitals are taken two or three times per shift. I noticed his chart today showed that they were taken 5 times over the course of one hour. Each entry looked normal- good sats, good heart rate. So why did they take them so often, I wondered. Well... I flipped the chart over and there was a note: "Passed Car Seat Study Today!!!"

We found out that his practicioner picked up an extra shift this afternoon, and decided to go ahead with the eval since she was there and he seemed to be doing very well.

So... good news for our little guy. He still has the RoP screening tomorrow, but things are looking very good for a Wednesday homecoming for the little one. It still isn't set in stone, but we are hopeful for sure.

Waiting semi-patiently

Dylan continues to grow and learn, and we continue to wait for him to be ready to come home.

He is doing fairly well. He has had no spontaneous episodes of bradycardia or O2 desats. He has had a few desats while feeding, but these can sometimes be attributed to positioning or the fact that he doesn't always pace himself well when eating. Sometimes he gets so interested in the eating part of things that we have to pull back on the bottle for a few seconds and give him time to catch his breath.

We experimented with the bottles that we were planning on using at home with him the other day, but Dylan apparently doesn't like change. When he was using the new bottles, he couldn't quite get a good seal around the nipple and had to work very hard to get anything out of the bottle. This caused him to desat a bit and to brady as well. So... we've put those bottles away and we'll just use the ones that he's gotten used to at the NICU until he's a bit bigger and stronger.

He continues to get physical therapy to strengthen his trunk muscles, and it definately appears to be working. He still has some work ahead of him though, as he needs to be able to hold his head up and keep his lungs expanded for when he get';s into the carseat. He failed his first attempt at the carseat study, having some difficulty keeping his sats up when in the upright seated position. He just needs some time and more work to get those muscles strong enough to support his head to keep his airway open and to help expand his lungs as needed, especially when in a more compressed position like they are when sitting.

Overall, he's moving along at a solid, steady pace. We'd love for him to make huge amounts of progress voernight and be ready to come home tomorrow, but that's not very realistic, so we'll just keep working with him as he allows us to and take things as they come.

I'll probably be going to updating the blog on Wednesdays and Sundays from now on. It's just been too difficult to try and do it at night after our visits, so I figured posting twice a week in the morning would be a great way to keep anyone interested up to date. Of course if there are any major developments, we'll post sooner, but for now, count on the Wed/Sun updates.

Closer and closer

Dylan continues to get closer to coming home.

My conversation with his doctor on Monday went very well. She feels that he is very close to coming home, and if he can go a week without any desat spells or bradycardia, he will be on his way. He actually has a new doctor and nurse practicioner, as the old team have rotated out at the beginning of the month, and they are following the same plan. We've been told that the doctor is "very conservative" though, so hopefully that won't stand in his way of coming home.

He has an exam scheduled for Monday to screen for Retinopathy of Prematurity, a potential problem with the growth of blood vessels in the eyes of preemies. This is one of the hurdles he has to clear before heading home.

Also, he needs to pass a "car seat test" where he will have to spend an hour in his car seat without experiencing any desats. Sometimes preemies, especially those with low upper body muscle tone, will have issues keeping their lungs inflated well enough when is the semi-upright position that they have to sit in while in a car seat. This test will ensure that he will be safe for the ride home.

He continues to feed well, and still exclusively from a bottle. There are a few tricks to getting him to feed at times, as it is still not natural for him to be eating at all. It's hard to remember that he still should be inside his mom, cooking and that he is still learning to do the simple things that you might take for granted from a full term baby. But, even if it does take a bit of work sometimes, Dylan does a great job of feeding and it is reflected in his growth.

As of last night, he weighed 5 lbs 14.9 oz.

His feed schedule has been changed to allow for what they call "ad lib, on demand" feeding. Essentially, this is a change from being fed every 3 hours in that it allows for the nurses to take better advantage of his alert states and feed him when he is ready. Sometimes, he would be scheduled for a feeding at 9pm, but would be wide awake at 8pm. When 9pm came along, the window had been missed and he was sound asleep. That won't be an issue now. He basically get's to eat any time from 2 hours since his last feeding, up to 4 hours from his last feeding, whenever he is most awake, and he eats as much as he wants, with a goal of at least 50cc. As long as he continues to gain weight, feeding shouldn't be a hurdle he faces before heading home.

All in all, he is making good progress. He is just starting another 7 day waiting period though, to go without the bradycardia. Apparently, the nurse that was watching over him for the last two nights observed a brady, and that has reset him for a week. It's tough to be patient when he's so close to coming home, but we're doing our best.