Wednesday, April 22, 2009

I'd Update More, but I have better things to do right now

Wow...does that sound mean or what? It's not. But I do have better things. My time right now is somehow split between spending the days with my boy down at the hospital, spending my evenings with my girl at home, spending my nights with the big boy at home, spending the wee hours of the morning waking to subject myself to the horrible yellow monster known as my medela, and somehow fitting in a nap every so often.

I actually have been able to get some knitting done too. I am about 3/4s of the way done my lilian top (wee!!! can't wait for the weather to be nice enough that I can actually wear it, too). I am planning on making a bunting bag with car seat space (for the seatbelt to fit into) next. Can you guess who this is for???

I'm currently working on a cross stitch birth announcement for my boy, too. I did one for my darling daughter when she was born, and haven't really done one in a few years, but thankfully it is one of those easy things that once you know what you are doing, you are set.

I will post some pictures of both of these when I have the time to take a picture that is half decent (currently they are not turning out so well...thinking I might need to try to get a few more of those nap things mentioned before in order to function in a normal manner...just a thought).

So, on to one part of the "better things to do", Riley is doing great. He has really started to root now whenever we hold him (he has no discretion...goes after the other half's nipples just as often as he goes after mine). Whenever I do kangaroo care with him, he fights and fusses and sets off his saturation alarms until I acquiesce and let him go into a position of his choosing...often being using my boobie as a pillow, and sprawling sideways. But, hey, if he is comfy and settled and not setting off alarms, it is good by me.

Here we are after today's just takes all the energy out of him to move the few inches to the left or right:

His current weight is sitting at 1350 grams (11 grams to 3 lbs). They redid the ultrasound on his head this morning, too. And, due to the grade 2 bleed still being present at the last follow up, they are expecting to get the results back to us tomorrow morning. Our primary nurse is also going to see about starting him on the non-nurtitive nursing this weekend, as he is obviously ready given the rooting. Their only concern is the CPAP. Usually they like for a baby to be off of it. But, since he has done well with the low flow before (and given that his caffeine has been upped, as well as the RT upping his pressure while lowering his oxygen), she is hoping they may agree to putting him on the low flow for those. We shall see. And besides, if not, it is not like my poor nipples aren't receiving enough abuse as it is. (Good lord, I miss the days of having a child attached to them, as opposed to an unforgiving body seems to be on the 3 hour schedule, so the upside is that I don't leak at the sound of a crying child; the downside is that I do leak every time it hits over 3 hours since my last pumping.)

The big little one is doing wonderfully as well. I think we have decided her "it is all about me" day that we are planning on doing with her (since she has been so wonderful in understanding why we all go down to the hospital on the weekends, and why mommy isn't working, but still drops her off at school/daycare and so forth) is going to be spent at the science centre. Damn but the girl is smart. She is completely reading on her own now (although she still does like for us to read to her every once in a while)! She is also starting to understand how to tie her own shoes!

Well, that is about all that is new and exciting in our world. I'm for bed now (just popped on while I had the bottles/shields/etc. sterilizing...if you are expecting, I highly recommend getting one of those microwave sterilizers...they are a godsend).


Monday, April 13, 2009

The Ups and Downs

As a parent of a preemie, especially one in a level 3 nursery, you prepare yourself for the worst, even if they are doing great. You are warned time and time again that pre-term infants are likely to slide back on the progress scale. That every big step forward can mean a big step back as well. And sadly that appeared to happen yesterday.

I called in to the hospital to see how he was doing yesterday morning, and was told that he had had a few apnea episodes through the evening, so they put him back on the biphasic CPAP (the one that provides him with a breath periodically). Ok, I can live with that. A little disappointing, but considering that he should still be spending another 8-10 weeks inside of me, I can deal with that. His lungs are, after all, still very immature and he is still learning to breath.

Well, when I get there last night, after spending the day caring for an over stimulated 5 year old (she got into the Easter candy while I was in the other room) and a sick husband, I find out that in addition to the set back with his breathing that occurred overnight, they are now thinking that they will have to re-intabate him (put the breathing tube back in). They also told me that he was very lethargic that morning, so they took some blood to test for infection - both viral and bacterial - as well as having performed a lumbar puncture. His tummy was all distended and hard for no reason, so they stopped feeding him and conducted x-rays on his chest and belly. They are thinking that he may be septic.

And cue tears.

No, this is not a pity post. It is just very disheartening when he has been doing so well. I know that we were prepared for all the bad things that can happen. We have been made aware of all the things that can go wrong and backward stepping we may have to do. But that doesn't make it hurt any less. That doesn't mean that seeing him looking more fragile than before, and knowing that he is now on 3 different antibiotics, possibly septic, had to go through an LP, has to go for the head scan now not only for the bleed but also because they need to make sure that there is no viral infection in the fluid in his brain, and is no longer being fed because they are not sure what has caused the distending of the belly isn't a horrible thing to stand there and see. Especially when he has been doing so very very good.

He is doing better today. He was good through the night and remained on the biphasic CPAP. His belly had softened as well. They are not sure if it was just him having a bad day yesterday or whether he was reacting to the antibiotics (meaning that there is an infection somewhere in that little body). Either way, they won't have the results from any of the blood work until tomorrow afternoon at the earliest. They started feeding him again this afternoon - half of what he had gotten up to (so 6 ml/2 hours).

Yesterday truly did feel like a slap in the face. Yes, I know that it is all about him. But it is very heartbreaking to know that there is nothing I can do for him anymore. At least a few weeks ago, sitting around and following doctor`s orders was good enough for him. Making sure I was eating right was good for him. Drinking lots of water was good for him. Now there is nothing I can do to protect him from these things that should not affect him...things that he should be inside of me still using my body to fight, create, etc. And for those who wonder why some of us feel guilt...this is why. Our bodies are supposed to protect these little angels. Our bodies are supposed to be the ones helping them to create antibodies, and learn to breath, and mature and develop to the point that they know and can without any sort of medical intervention. Somewhere along the line, my body decided it didn`t or couldn`t do so. Somewhere along the line, my baby boy realized that he was in just as much danger inside of me as out. And yes, there is the part of my brain that tells me I am an idiot for feeling this way. But guilt does not care about logic.


Friday, April 10, 2009

Welcome to the Kilo Club

Yep, we are officially members of the kilo club. See:

For those who have been through the NICU, you know what this means. And why it would make us so very happy. For those who don't, essentially it means that our little guy is over a kilo, and they are expecting that he will remain that way (their weigh fluctuates during the first few weeks of life...all baby's weight does...but for those who are near or under the kilo mark, making it to one kilo is a huge thing).

Yesterday, I spent the entire day at the hospital with Riley. Tony and Am came by in the evening. We got to spend some great family time...with Ammy asking a thousand and one questions about how he was doing and when she could touch and when he could come home. Of course, after about 30 minutes, this quickly became "when are we going to my cousins?" Meh...can't expect too much, I guess.

Riley was supposed to have his second ultrasound, the follow up regarding the bleeds in his brain, yesterday, however, it was written down as being scheduled for today...which is a holiday. Not sure when it will be done now, but today we were told it wouldn't be until Tuesday. :( I am trying not to worry about that one, but it is hard.

The umbilical line has come out today, too. This will be much more comfortable for him, I imagine, and at the very least, his belly button can heal and he can be placed on his stomach more (which is better for their breathing and digestion and a whole slew of other things).

They have decided that Riley will be put on low flow when being held, and will continue for as long as he is tolerating it well. Today, he was on the low flow for just over 2 hours! Unfortunately, he had two episodes with the heart rate (not the saturation levels - which is a great thing in and of itself), so they decided not to stress him out and put him back on CPAP. But, for being only 10 days old, over 2 hours on the low flow is awesome.

And, since it is only fair, here is proud papa with his little man:

Well, that is all for now. Hopefully things will continue to progress as well as they have been. His feeding is now up to 10 ml/2 hours...only 6 more til he is at the level they want...and with him being upped every 8 hours, and with how well he is tolerating it, I can't see it being a problem to get him up there.

In art related news, I have picked up the sweater I started prior to his birth. I haven't had the energy or mental fortitude to take it up since then. But, today, I finally started doing it again. WEE!!! I was somewhat surprised that my fingers haven't forgotten what to do.

I also started working on a birth record cross stitch for Riley. We bought it a while back, but I hadn't started it, as he wasn't expected until June. So, I have decided to start that...(I did one for Ammy too when she was born). Should be something to keep me occupied when waiting for family visits (on the weekends, when the other half is done work, we all head down for about an hour or 2...but since there are only so many times that I can rearrange his room, and everything else is fairly clean, there isn't much to do here except go crazy).


Tuesday, April 7, 2009

My little angel

Originally uploaded by knittybitch

Today they let me hold my little boy. I was so over joyed at that. He is doing great, too. They started feeding him 2 days ago (1 ml/6 hours). He had gained 30 grams at his weighing yesterday evening (after losing an initial 240 grams), so this was great to hear. And to boot, they have upped his feeding to 2 ml every 2 hours. They are thinking that it might be upped to 3 ml every 2 hours if he continues to respond so well to the feeding.

And I love that the nurses and doctors have decided to let us become much more involved. We are able to change him and clean him, provide him with a soother if he is upset, and, of course, hold him for limited periods of time. We are also now able to help with his feeding.

The only thing that we have hit that *might* be a problem is that he does have 2 small bleeds in his brain. Bleeds are very common, and he has one grade one and one grade two. They are not overly concerned about the grade one, however the grade two may cause an issue. Often times, it is reabsorbed into the brain, however they will be completing another scan on Friday to see if it is getting better, or if they will have to look into putting a shunt into the ventrical.

Otherwise, he is doing great. Did great on the low flow today, and is finally gaining weight.


Thursday, April 2, 2009

I swear it is not an April Fool's joke

yes, both my hubby and I have twisted senses of humor, but no, we are not that mean.

This is what we had to say many times over the course of yesterday.

Riley Russell Naugle made his debut yesterday morning at 7:50 a.m. weighing in at 2 lbs 9 oz. A little on the early side (27 weeks 3 days), but everything appears to be going good at this moment.

Will update more detailedly when I have a few.