Simon: 2 week update

I figured it might be about time to jot down some of the things that have been going on the past couple of weeks.  Simon is still in the NICU.  It's feeling tough and sad at times.  I know that it's important to bring home a healthy baby that can manage on his own, but leaving him there day-after-day is getting tougher and tougher.  It doesn't help that we keep having these expectations, not that anyone has said for sure, but with the comments nurses give us we've set our own expectations of when it he'll come home.  When those expectations aren't met it just makes us sad and frustrated.  We are eager to have him home and at the last unmet expectation I'm really trying not to have anymore until they say he can come home tomorrow or whatever... it's really hard though.


Anyway... I should tell this in story form, but that seems daunting so instead I'm going to go with bullets just to hopefully get most of the information out there.  The last post left off with his birth, so going to try to start there.

• The day after he was born we were finally able to hold him for a bit.  Which was nice, although not nearly long enough.  He was still very hooked up, and they didn't want us to jostle him around too much.  Simon was on a breathing tube, a PIC line, monitors and CPAP machine.
• It took the cardiologist awhile to figure out the right kind of medicine to control his atrial flutter.  The medicines they would put him on would work for awhile, but then he'd jump back into the abnormal rhythm.  The finally landed on the drug flecainide.  At first they were trying to avoid using it because of the potential side effects.  Flecainide can help stop heart arrhythmia but it can also cause it.  The good news is Simon is responding really well to this drug and they are keeping him on it.  When he goes home Dan and I will have to continue to monitor his heart rate a few times a day via a stethoscope and possibly a monitor at times.  Simon will most likely be on this drug for 6 months (there's no magic amount of time for this). We will continue to give him it after he is able to come home.  They sent off Simon's blood to get his levels with this drug and they came back slightly low over the weekend.  The cardiologist previously said that if they came back low they wouldn't increase since he's responding well to the level he's on.  We will probably find out more today.
• Simon came off the breathing tube before I left the hospital which was great.  He was still on the CPAP machine for awhile.  He stayed on that and they slowly changed it over to a new CPAP machine and then to oxygen and lowered his levels from there.  He's now off all breathing help.
• His PIC line began irritating his leg so they removed it and added a normal IV.  At that point he was only on basically sugar water.  Eventually that came out too when he was getting enough food to sustain him.
• Last week they moved him to a step down unit.  This is a good thing, it's the same amount of care, but they move the babies that are more stable to his area.  He started in the Butterfly Pod and now he's in the Panda Pod.
• Last Thursday he got circumcised and did really well - it hasn't bothered him at all.  They've ordered a lot of tests that he'll need to get done before he can go home including that procedure.  Over the weekend he passed his hearing test which is also good.  He'll need to pass the car seat test.  He failed the first attempt... hopefully not the second time.
• That's where we are at... the eating issue.  This is the main thing keeping Simon in the hospital.  He needs to be able to eat his bottles and he just tires out and becomes uninterested in bottles.  They've been slowly increasing the amount of breast milk he's been getting.  The last update is he's up to 65ml which is about 2oz.  When we go in it seems like he's doing better each day... or we are hoping so anyway.  Dan and I have both tried to feed him with varying results.  Sometimes we are able to get him to take half a bottle, other times not much at all.  We just keep hoping it will just click with him.  The doctors and nurses have said this is totally a possibility but also trying not to get our hopes up - he will get it when he gets it.  What he doesn't finish in his bottle he gets fed via a tube (which is down his nose).  Sometimes they just give him the whole feeding via the tube.  I'd think he's taking about half of his feeding via bottle.
• Speaking of feeding him I have tried to nurse him once (he gave a couple of sucks before just hanging out).  I should probably try more but mostly I've been pumping.  I've been getting more than enough to keep up with his feedings but the pumping does rule my entire day.  I'm not sure how I'll go forward, but I'll keep pumping for the time being.  Maybe when he's home we'll work on nursing together.  I'm just not sure how I want to go about it.  A lot of it I just want him to eat so he can come home and not that anyone has said he'll get confused, I just don't want to add another element to this feeding thing.  We will see what happens.  He's getting food and so far it's all been from me and I know that's good for him.  The pumping isn't the most fun thing I've ever done but I'm starting to get into a good routine and understanding what works for me.  It's not a forever thing and that's what I keep telling myself.
• I've been doing pretty good with my recovery.  At the beginning of the weekend I was still feeling pretty sore, but over the weekend I've started to feel a lot better and less sore.  I haven't taken as much pain medication and I feel my stamina coming back.  I am still wearing the binder they gave me.

So that's a brief update of where we are at... Simon needs to eat so he can come home.  So please send out good vibes into the universe that he starts to eat real well and can come home and meet his animal family.  Also, so we can get into a routine at home and really start to feel like a little family.

Holding him for the first time

Dan getting his chance

Open eyes (just the CPAP machine and the little tube is the feeding tube)

No more breathing tubes!  He does love sucking his paci

First bottle feeding - you feed them turned to the side just in case they take on too much for them to swallow it will go into his cheek instead of the back of his throat

Dan trying a feeding

Life is rough - Simon also likes to put his hands by his face

A goofy picture I caught