Tuesday, June 30, 2009


Well, today we are three days overdue, and Riley is 3 months old. Interesting that, eh?

Anywho, I spent a loverly weekend at the hospital (and yes, for those of you who have asked and who are wondering, Mount Sinai WAS under quarantine for H1N1...there was an exposure to both the NICU and Level II nurseries due to a visitor with H1N1). Last week, we were still battling with the doctors telling us that Riley could not handle oral feeds. This came about when one of the nurses we got stuck with...and yes, I mean "got stuck with"...gave him a bottle too quickly, and he immediately vomiting almost the entire feed back up. Now, prior to this, Riley had taken maybe 8 bottles...and all of them had been paced. I called in last week to hear "well, he took his bottle too quickly and threw it all back up". Um, first off, the kid is 12 weeks old. He didn't take anything too quickly, you gave it to him too quickly. Second off, please tell me for the love of christ that you didn't chart it that way, as I have spent the last 2 weeks battling for them to provide him with bottles when I am not there to breast feed, since that is the only thing keeping them from sending him home on oxygen.

Well, sure enough, the damn RN had charted it, and Riley's feeds were changed back to 1 bottle per shift; breast feeding on demand ad lib when mom in. Meaning, in short, that if I wasn't there to breast feed him, he would be allowed to do one bottle, and other than that, it would all go through his feeding tube. So yes, I freaked out and forced them to see that he can handle it. I booked myself into their care by parent room, and spent the entire weekend in the damn level II showing them that he could do it. I hate that it had to come to that. That the level of credit he is being given is completely negligible unless I am taking it into my own hands. But, the up side of it is that the feeding tube is completely gone now, and is not going to be going back in. He is now on bottle or breast, period end of story.

Of course, it helps that he is no longer at Mount Sinai.

That's right. No more 6 doctor panel in order to change things. No more nurses agreeing that things should be different, but doctor on call not wanting to stir the pot by changing anything. No more "your son can't do this, but we aren't going to bother setting up any sort of a plan to get him to". How freaking awesome is that?!?

While I was rooming in at MS, I spoke with one of the doctors (after they grudgingly admitted that he was able to handle all oral feeds) about starting the process to transfer him out to Credit Valley, if they had space, and home on oxygen, if they didn't. He stated CV had no spaces, but that he could certainly put in the request to start the home on oxygen process...which would take about 3 weeks! 3 weeks?!? "If we rush it, we may be able to get it through in 10 - 14 days." Okay, I don't even want to have him here under your "care" for another day let alone another 2 weeks. Then, of course, this was mentioned to one of the nurses, who completely contradicted him in his timeline (saying that it only took a few days for the process and approval to go through). Followed by another doctor contradicting both of their timelines. Yeah, it was time for us to get out of that place.

However, one of our nurses was a gem and called CV (where she also works) about a bed space for him since he was born there. They had one, and were willing to hold it for Riley until the clearance regarding H1N1 was given. Great! Wonderful! Phenom! Until they decided that there was another baby in the level 2 who had been on the list to transfer to CV (who was born at Mount Sinai) that they decided they would let have that bed space. Um, first off, Riley was born there. He has top priority to go back. Second off, the baby in question who essentially stole our bed space has been having issues and even the other nurses have flat out said that he shouldn't be transferred anytime soon. But yeah, sure, you go ahead and give our damn spot to that baby. Can't say as how I could expect any less.

I am sure that if I wasn't dealing with constant negativity (such as being told that Riley going from "he can't survive off his CPAP" to 50-80 ccs of oxygen in a little less than 2 weeks being considered "not very good" and "virtually no progress"), I may have been a little more understanding. As it is, not really. I am no longer in the mood to play nice with that place.

So, Riley has moved to Trillium. I went over his first night to visit him (around 1:30 a.m.). He was settled and great. He is already making progress on what he was when he was at MS. He is down to 75ccs of oxygen at 50%, which is a big step up from the 80-100 ccs of oxygen at 100% that they kept sticking him on at MS. And he only has one doctor who will decide upon his care based on him. Hmmm...taking things on a baby by baby basis? What an interesting concept.

I also love that he is allowed to have all the little knitted things I made for him (such as his hats and his booties and his blanket). AND, best of all, my daughter is so very happy that she can finally touch him, and hold his hand, and rub his back. She was almost in tears over the fact that she couldn't do any of that.

His doctor (the only one that he has) has decided that she wants to monitor him for a few days, and will decide on Monday if sending him home on oxygen would be the best bet. If she believes so, we will have the RTs in that morning, and hopefully have him home a few days after that. If she thinks that he is doing good and making some real progress, to the point that in a few weeks, she thinks he can shake the need for the oxygen all together, she will let us know, and they will keep him in for those few weeks.

Either way, it takes me 15 minutes to drive over there in heavy-ish traffic. I can go up and feed him, come home and eat and play with my daughter, go back for his next feed (almost have a normal life. And I don't have to battle people for my son to get an inch of credit. That is probably one of the nicest things.


Wednesday, June 24, 2009

Please Sir, I Want Off This Ride

Well, it has been a rough ride, and still it is going. :( I hate that. Most of the people who we started our NICU journey with are home now. A few who we knew that had preterms after us are prepping to go home (the last of whom will be home this Saturday). We, however, can't even get moved closer to home.

Many of the friends we made while at the NICU have gone home now. The last of them left yesterday. Most of them were born after Riley (both gestational and actual). And still we are looking at July or August to get him home. And, as they have already discussed him coming home on oxygen, that is likely going to be the case. I hate this. I really and truly hate this. It is beyond frustrating and I hate that I feel like some hormonally charged, angst ridden teenager. It has been 12 weeks. Our due date is Sunday. And still we do not have a clue when our son is coming home.

Riley's breathing issues are getting better, slowly...very slowly. He is now down to low-flow 24/7. But that doesn't mean sweet jack at the moment, since he is still down in Toronto in the Annex, and still requiring enough oxygen that they haven't even bothered to discuss discharging him with us.

He makes these baby steps, that most of the preemies made weeks before him, gestationally speaking, and even though I get very excited about it because he is doing things better, or without intervention, to say the least, it is still a baby step that should have been taken weeks ago. Seriously, can I even call him a preemie anymore? I mean, he is past being "full term". He is over 8.5 lbs.

And I hate having to explain to people that yes, I did have a baby, but no, he is not home. Yes, I know I was due this month. No, I did not go full term. No, it is not a freaking vacation having a full term child who is not able to be home with us, so please stop making it seem like a dream that I don't have to wake up to screaming and dirty diapers several times over the course of the night.

I don't know when he started smiling. When did he learn this one? (I hate that I cannot just appreciate the smile, as my first thought AFTER "OMG, look how cute he is" was "I bet one of the nurses here was the first to see this miracle".)

I'm frustrated. Seriously frustrated. And, as before, there is not a damn thing that I can do about it. I can suck it up, drive down to Toronto to spend a few hours with him (because with another child at home, I don't have the luxury of spending 24/7 with him down there), come back home, clean and cook and go through the motions of everyday, ordinary life, pump, and cry myself to sleep; only to repeat it all over again the next day. Just like I have the last 85 days.

A part of me cannot stand going down to that hospital anymore. There is nothing wrong with the hospital itself. Don't think that in the least. This is not like my experience with Women's where I despised the place because of the people I was dealing with and the "care" I received. I just can't stand going down there anymore and knowing that I have to leave that part of my heart there every night. And as much as I don't want to do this anymore, as much as I cannot stand even thinking of heading down there again, I know that I will, because I cannot stand to not go down to see him and be with him.

This is the blanket I mentioned in my previous post. I am about 1/2 way done now, but have become so lackadaisical in continuing it, because it seems to have become a bit symbolic in the downward spiral pattern. That is how this is starting to feel...and that is, sadly, the only thing that I can think of whenever I pick it up. (Yes, great big fie on the friend who pointed that one out to me.)

I won't apologize for the sullenness of this post. (You read it and no one forced you.) I got set off this morning when I received yet another "they are sending my son home on Saturday...I am no where near ready. Are you guys?" text message. Yes, I am freaking ready. I am more than ready...yes, we have all our furniture and all the accoutrements that babies come with and likely will never need.


Monday, June 8, 2009

The Post In Which KnittyBitch Tries to See the Bright Side

Well dear readers, as you know, my son's breathing has been an uphill issue with the hubby and I. Earlier this week, after questioning if it might be related to the fact that I have an immune system disorder (my body fails to respond when I have a simple infection, and often times does not respond to infection in the "ordinary" course), or other medical problems which have occurred on both hubby's side of the family and mine, as well as questioning what I might have done wrong (if you are or know a preterm mother, the guilt is a common, though illogical, thing), we finally received a straight answer, of sorts. My son has been diagnosed with a chronic lung disease. It is gestationally related (he is over 36 weeks and still requires a fair amount of outside help with breathing), and sadly there is nothing that anyone can do to facilitate his recovery from it. This type of lung disease does not have any hard and fast rules for what can be done to make the child breath. Some things work for some children, some things work for others. But, there is nothing that is constant with any child, beyond time. So, at this moment in time, we are looking at "at least" another 3-4 weeks in the NICU. Because of how badly he responds to low-flow (i.e. the last time they tried him on it, he was at 600 oxygen on low-flow, and destated to 49% in less than 10 minutes), they want to give him more time before trying again. This has hit the point of frustration that is well beyond having anything left to say.

So the above was actually written last weekend. On Tuesday just past, we had our family meeting with the staff neonatalogist and the nurses, as well as the NICU coordinator and social worker at the hospital. At that meeting, we were advised that we were looking at at least 6-8 weeks of Riley remaining in the hospital, before they would look at sending him home on oxygen. They decided that they weren't going to even consider trying him on the low-flow again for another week. He just didn't get it. Both of us expressed our frustration at the fact that we honestly believe that he can do these things, but that he isn't being given a chance to try in circumstances that are optimal for success (i.e. every time that he was apparently tried on low-flow, we were never there for it, despite calling in to tell them when we would be). So on Wednesday, we arrive to be told that they are putting him on one hour low-flow during breastfeeding, and will keep him on the 9 hours of high flow as well. What? What happened to the statements of "he can't handle it, so we aren't even going to try"? Apparently our nurse for the day, who was one who had been there for many years, decided she also believed he could do it, so screw it, she was trying. The RTs agreed with her. So it was done. And he did amazing! They put him at 400, and for the entire hour, WHILE BREASTFEEDING, the lowest his saturation went was 96%. This is, I should mention, much better than he ever does on the CPAP. So the nurse charted how well he did, and decided that she would tell the Drs that he could handle the hour without issue. Thursday, same thing. One hour LF...they had to turn it down to 100 just to stop him from setting off his "over saturating" alarm. All this while breastfeeding. Amazing!

That evening, they moved Riley to the annex (which is a step between NICU and Level 2). It was agreed there that they would increase his breastfeeds and his low flow, since he appeared to be doing great with it. Since they are still operating under the assumption that he can't do it, though, they only increased it to 6 hours and completely got rid of the high flow, but what can you do. So, we are now doing 6 hours of low flow and 2 sessions of breastfeeding a day. Hopefully, since the nurses in the Annex are awesome and have seen how well he is doing and read his past charts (often times asking me "um, why is he still on the CPAP? I don't want to put him back on it, he hates it"), I am hoping that on Monday they will increase his low-flow time.

I must say, though, that I hate (and I mean deep down hate) that the doctors keep telling us that our son can't do things, and that he is not able to handle these things that we know he can, and finally agreeing with us. I have stopped attending the rounds for this reason. They piss me off. I know that they "have the child's best interest" at heart, but I am sick to death of fighting them, and it doesn't amount to anything, so...

In other news, I have started the OpArt blanket for Riley. Not too far into it, but after only a few rounds, you can already see the illusionary effect of it. I have also completely finished his sweater, and several more of the aviatrix hats.

I will post with pictures later, but for the moment, check out the chunky monkey:

Tuesday, June 2, 2009

Since I am Getting Married Soon

Just thought I would share this, since it is probably one of the best answers ever (leave it to Grover, man)!


Yeah, I can't believe that. I am still sort of stunned by the fact that my little man turned 2 months old yesterday, however isn't due for another 26 days. That is, all things considered, really very freaky.

However, on the topic of my little man, he is doing good. They have upped his high flow to 6 hours daily. WEEEE!!!! Hoping it means that we will start to hear the word "low flow" being tossed around soon. Seriously...it has been over 2 months now. I hate that when I go in to visit him at the NICU, babies who have been there for 2 weeks who were born at a younger gestation than him are chilling out on the low flow and looking to be transferred down to level 2 while they are still within their first month of life.

I know, I know. You can't compare babies. But still, it is bloody frustrating. I mean, I had the lovely shots in my hips which were supposed to mature his lungs...most of these ladies didn't. Riley didn't have to be resuscitated...most of these babies did. Riley is 63 days old...most of these babies are under 30. Why the hell can't he get rid of this CPAP?

Yesterday, he did amazing on the 6 hours of high flow. Rocked it out at 35% for the entire 6 hours...and stayed in the mid to high 90s the entire time. Then they flipped him back to CPAP...at 40%...because he kept desating at anything lower. Seriously? Seriously...what the hell is that?

Anywho, rant over now. I am still happy that he is doing so well, and that he is starting to make progress, and that he is doing good with the breastfeeding. I am just very disappointed with seeing every other baby around us move from intubation to biphasic CPAP to CPAP at room pressure while my little guy is going ass backwards and keeps going up in necessary oxygen on the bloody CPAP.

I guess the worse part is that there is nothing that can be done, and no reason that can be found for this. His lungs appear to be fine and very well developed. He just doesn't seem to have the ability to keep his saturation levels up. And I am getting really, REALLY sick of hearing "well, he will do it on his own at his own time". I know this. I realize that I won't have a twelve year old still sitting around in the NICU. But that doesn't mean that all the false hope of him moving to a level 2 and being home before his due date that I was filled with from the comments of how wonderful he was doing and how healthy and strong he was (all things being considered) doesn't affect me every waking hour. And the fact of the matter is that if I were to have had him today, he would be coming home with me tomorrow.