Wednesday, October 21, 2015

Simon: One Month

On Simon's due date he turns one month old - October 20







Trying out this format, might need to add different categories as we go along...

Weight:  Simon was 7lbs 14oz at his doctor's appointment last Wednesday.  At his cardiologist appointment he weighed 8lbs 3oz




Height:  At his doctor appointment he was 20.5 inches




Medical Issues:  Oh Simon, already had so many medical issues in his little one month of life.  The good news is none of these issues are long standing ones and all have been resolved.  I've talked about how he was in the NICU and finally was eating well enough to come home.  One day we went into the NICU and our angel nurse, Cindy, had simply changed the nipple in his bottle from newborn to size one and that seemed to be the magic equation since he's been eating and not looking back.

Simon had his first pediatrician appointment last week at 3 weeks... which isn't normally a weekly appointment, but we were instructed to go a few days after he got discharged from the NICU.  As a side note I really stressed about how to pick a pedi, like how do you do it when you don't care that much (that sounds bad, but I'm not a picky person so it's not like I had very specific needs or wants) I ended up deciding somewhere close to us was important and went with that.  I looked at pedi websites and ended up picking the one we did.  It was really nice when I was at the hospital and the NICU and the staff there saying how good this office was and how much they liked that doctor. The doctor visited Simon in the hospital quite often so he totally knew all about Simon when we went to the office which was really nice.  The doctor said this is the first time he's had a patient with an atrial flutter and the first time he's ever entered his medication into a chart.  He said he could only pick a tablet form instead of the liquid that Simon is on. He told me that we should continue to have the medication made at Mercy instead of a local pharmacy since it's normally in tablet form and we wouldn't want them messing up making it special for him.  While this might make some people nervous, really I think it just makes Simon special... he had this really weird condition that makes him unique.  I guess it's easier to say that since I know this isn't a lifelong issue and it's under control.

Simon sees the cardiologist today. Everything is looking good.  Simon had to get another EKG - which takes longer to get set up than it actually takes to run it.  They have to stick all these sensors on him and with his squirmy body sometimes it's hard to keep all the sensors stuck at the same time and long enough to get a good reading.  Eventually it all worked.  Simon is looking good and the plan is to keep him on the medication for roughly 6 months when we will go back to the cardiologist.  The idea is that we won't change the dosage but he will get bigger so he'll basically wean himself off the medication.

I want to give Simon mad props regarding taking his medication, Flecainide.  We have to give it to him twice a day.  They showed us in the hospital by squirting it in the side of his mouth while he sucks on a paci.  This has worked out beyond perfect.  He sucks it down each time and hasn't spit it back out (don't jinx me by putting this out on the interwebs).  It must not taste bad because it's not a problem at all!

I hope that Simon's medical issues are squished into his first month of life and it's smooth sailing from here on out.


Sleep:  We decided that since Simon was already sleeping in a crib in the NICU we would continue that.  I'll say we've done ok with that and he does sleep in his crib sometimes, but I've been bad in the last week with him sleeping in rock n play and me sleeping on the couch.  But getting out of bed to put the paci back in his mouth only to walk back to our bedroom and just get back into bed before he starts crying again and I have to get back up wears on you a bit.  I'm going to try to be better this in the next weeks.  We were keeping him on the same eating schedule he was on in the NICU, but I started to let him tell me when he's hungry - especially overnight.  Sunday night he gave me a four hour stretch of sleep - amazing.  He sleeps pretty much during the day as well. although I'm noticing he's waking up more.


Clothes/Diapers (Sizes):  I've been putting him in newborn diapers, although at the end of his stay in the NICU they were putting him in size 1.  I had packages of NB and wanted to use them... I think we have one package left to go through.  The same goes for clothes.  I try to put him in newborn things since let's do it while we can, but we put him in three month stuff too.  The footed newborn jammies feel like his legs are all scrunched up so I guess maybe he's long?  Around the house we normally have him in onesies (either long or short sleeve) and wear the footed stuff when we go out.  I dress him in gowns typically at night and he sleeps in a swaddle or a Halo sleep sack.



Diet:  We tried to do the nursing thing, but every time I tried he'd give a couple of sucks and then give up... so I guess that makes me an exclusive pumper.  So far that's been going well and I've been able to keep up with his feedings (giving him fresh milk) and still have some left over to freeze.  When he left the NICU he was getting around 60ml (2ozs) and now he's up to close to 3oz.  He normally finishes all his bottles and is eating about 8 times a day.




Baby Gear Love:  For this month, the rock n play for sure as he's in that a lot!  We also like the paci and sometimes he uses the Wubbanub pretty effectively.  The Born Free bottles have been working for us (I forgot his Dr. Browns bottle at the hospital grr, luckily he'll use the bottles we have).  The swaddles/sleep sacks are great. 




Milestones/Firsts:  First first trip out was to visit his grandma Charlotte and he does pretty well in the car.  His head control is getting a lot better too.  His first doctor's appointment.




Likes:  His paci, eating (finally!), laying on his chest on us, sleeping, the vibration of the rock n play.


Dislikes:  Being naked, diaper changes, being hungry, hiccups




Things I Don't Want to Forget:  Simon can sleep - I wouldn't call our house a quiet one with the bird and the dogs barking, but he sleeps right through it - does not phase him.  The dogs really want to be close to him, although we've slowly been integrating them.  The dogs don't like when he cries and they seem concerned.  At the end of the month we've had them both out at the same time under heavy supervision.  Quina will look at him, but that's about the most interest she has and the cats could not care less about him (such a cat thing).  We end up changing his outfit at least once a day, but sometimes more.  It's funny to hear him fart.  When he cries it's so dramatic (wah wah wah wah waaaaaaaaahhhhhh) and I mostly just laugh.  His hands and feet seem so big for a small baby.



Monday, October 5, 2015

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