Wednesday, May 6, 2009

Big Steps, Little Steps

Well, Riley is doing wonderful in the weight gaining department. As of last night, he was up to 3 pounds 14 ounces. His feeds are now up to 35 ml/3 hours. So very happy with that.

Since the infection that Riley went through a few weeks back, his breathing hasn't gotten back to what it was. It is a hard thing to see, especially since he was doing so well with that portion of his development during the first week and a bit of his life. But that damn infection just knocked him back so much. And I know that there is nothing that could have been done for it in any way, shape or form, but that doesn't mean that I don't hate it. Unfortunately, there is no one to rage and rant at for it. It is what it is. He went from being down to low flow to being back on bi-phasic CPAP (this means that it keeps his pressures, and in essence, if they aren't up to what the machine dictates, it gives him an extra breath). His pressures on the bi-phasic have been maxed (which is 10%/7%), and his oxygen has constantly been at 32% (room pressure, what we breath, is 21%). This has been a constant for the last 2 weeks. They have attempted to bring these numbers down, but to no avail. One nurse attempted to bring his oxygen down to 29%, to which he began spelling every 10 minutes. Not good. They had no choice but to bring it back up again. It is just hard, given that he has made virtually no progress as far as that is concerned.

Our primary nurse was in today, and I asked her about this - if the doctors would order another xray to see if there was something impeding his improvement of his lungs. We discussed that, and the fact that nothing has changed at all in the last 2 weeks, which was worrying me very much since the last change was just after the infection - dropping the oxygen from 42% to 32%. So she decided to dropped his pressures, despite the doctor having said that they didn't want to because of the number of spells he was having, purely because she thought he was ready, and she is the one that has to watch over him. He seemed to be doing good on the lower pressures. The numbers are still high (8%/5%), but at least we are finally seeing some movement.

We got the results of his second follow up ultrasound. He still has the grade two intercranial bleed, however it appears to be slightly smaller. They will do another follow up in two weeks time.

He also has his eye exam scheduled for Monday (it should have been last Monday, but someone forgot to put it on the list). His poor little eyes are all puffy still from the CPAP (the CPAP causes their eyes to swell, I would assume due to the pressure constantly being pushed into their sinus cavity along with the lungs). :(

They also requested a physio consult for him, which was performed today. Both Tony and I noticed a while ago that his left foot was sitting a little wonky. I know that it is normal for babies, especially preterms, to have much more flexibility in their extremities, but it has hit a point that it no longer seems normal, and with his spelling, they are not able to position him differently as often as they are with other babies, so he seems to have developed a preference to being frog legged. The physio therapist would like him moved more, even if it is just to his back with towels or blankets at his hips to bring them in a little more. She is also going to start coming in daily at 9 a.m. to work with his legs - doing stretching and such - so that they are no longer showing resistance to the movements.

In other news, it appears that I am a trend setter, but not necessarily in a good way. 4 weeks after I announced I was expecting at work, one of the girls who worked around the corner from my desk announced she was too...4 weeks from my due date (obvious to some, but not necessarily everyone). 2 weeks later, another one. Well, the one who was due 4 weeks after me gave birth last Friday to her son. He was 2 lbs 12 (great weight) and was born at 28 weeks 1. He is, so far, doing great. Got the very last bed space available in all of Ontario (they began shipping babies to Buffalo on Friday as they had no space in our NICUs). She is doing great (got to go see her son for the first time on Monday just past), despite the pain of the c-section. But, of course, they are now watching the one due 6 weeks after me like a hawk. Oddly, she was the one who told me about the other birth. I`ve told her already that she is not allowed to follow suit. That her son has to stay inside her until at least 37 weeks.

Anywho, that is really all. Still sitting around waiting for EI, as my file is still currently under review...there is a backlog, shockingly enough. Not sure when I will actually see anything, but at this moment in time, we have gone through most of our savings (and with our wedding being a few months off, that is not particularly a good thing) and have had to pull our daughter from school-daycare. Flip side to the saving money in that respect is that I can no longer go down to the hospital to spend my days with Riley, and have to find some way of being content with seeing him in the evenings and on the weekends. It is hard, and I spend much of the time calling up to them to see how he is, but, again, it is what it is.

Oh, and on knitting related news, I finally finished the socks for know, the ones I started back in August of last year. :) Finally done. And I am almost finished the first of his guitarman socks. Feeling so productive some times. (I have found that I can balance the pumping bottles on my legs and work on socks without a problem - yeah, I am talented like that.)


1 comment:

Keltie said...

Whew! So much going on! I'm thrilled to hear that he's doing well and gaining. That's a great sign. I wish I'd been more like you WRT being on top of what's up with him and asking all the right questions. That's something I wasn't as good at. I found it so hard to keep track of what was going on.

Also, you shouldn't be beating yourself up in the SLIGHTEST for seeing him 'only' on evenings and weekends. What good are you to anyone (especially yourself) if you're running yourself into the ground? There were some babies at WCH that I maybe only once or twice saw any family at their incubator the entire time we were there. If you're seeing him every day you are doing great!

Breathing was also Essie's hardest hurdle to overcome. I guess it's just a lot of work and when they need that energy for something else, they really need it.

So glad to read this update, and I'd love to hook up at one of the events this summer! We're definitely going to the WCH NICU picnic, but that's all I know of so far.