Happy Holidays

We've had a great few weeks since C has been home from the hospital.  Its been different having a baby that eats in 20 minutes instead of an hour and 20 minutes.  We took C to the houses of both sets of grandparents.  Taking him out of the house was surprisingly liberating.  I was very excited to have him experience life outside of our bedroom and the hospital.  The world is growing for him, every day.  The beginning of January continues the hectic medical schedule we've had.  Hopefully we're on the downward slope of the bell curve.  We have appointments with our pediatrician for Synagis, the urologist for his kidney reflux, the GI doc for his tummy reflux and the cardiologist for his mitral valve reflux... I know its regurgitation, but I was on a reflux trend so I thought I should keep going with it... *grin* OH well.. its probably not as funny as I think it is... We're still lacking sleep, I assume that is normal for parents of a 4 month old.  We're not allowed to let him sleep through the night quite yet, I'm hoping that will change soon along with perhaps not having to fortify his bottles anymore.  If we can stop doing that I can pump less and breast feed more.  That would be lovely... 

We're home...

So we've been home for about 36 hours now and we're very happy, but still trying to catch up on sleep.

I'll post when my brain starts working again.  Once we stepped down to the floor I went from getting 6 hours of sleep per night to 3 hours of sleep per night.  Adding that into the all nighter in the PICU and I'm just plain exhausted... But also thrilled.  C used to take about 1.5 hours to feed, now we can feed him and give him meds in under 25 minutes... its amazing.

Steppin' on down to the Cardiac Floor

After C broke the pacer wire it was decided he really didn't need it anyway.  The wires were removed and about 10 minutes later so was his chest drain.  Almost as soon as the pacer wires were removed the PVCs stopped.  It seems they were somewhat irritating for his heart.  Removing the chest drain allowed a little bit of air into his chest cavity causing a slight pneumothroax.  The doctors were all set to release us today, but one of the residents didn't agree.  She wants to wait until Monday when she can talk to GI to confirm how his remaining reflux issues should be handled and wants me to have a consult with lactation for eventual breast feeding.

They aren't allowing me to breast feed right now because they want to fortify his feedings still.  I'm a bit frustrated by this.  Without fortification, C gained about 30 grams a day.  But because his volumes weren't what they expected for weight gain if the breast milk had the average of 20 kCal per feeding, they decided he wasn't getting enough calories.  I've expressed my confusion over this given his weight gain both in the 2 days since he started eating again (and his intake is up significantly from that point) and his weight gain prior to the repair when we were in for feeding issues.  In both instances he's not taking their goal volumes, but he's gaining weight and isn't dehydrated.  She carefully explained to me (again) that breast milk has 20 kCal.  I interjected the word average at this point, because it isn't that every woman's breast milk has 20 kCal, its that they have 20 kCal on average.  

I really wanted to be able to trial breast feeding in the hospital to see if he ate long enough, had adequate weight gain and adequate output.  I'm frustrated that they aren't willing to try that when he's clearly gaining weight even when his intake isn't what they were wanting.  I'm even more frustrated that they only prepped minimum intake requirements each feeding and I had to ask for more.  Overnight when I slept, they only fed the minimum even though he would take more.  The nurses had orders for 45 mL per feeding ad lib so that's what they tried to have me do.  Then I get stuck fortifying because those orders meant his intake wasn't around 112 mL per feeding which is what they were looking for.  C wants to eat about 60-80 mL per feeding and I think he'd do just fine on that.  I wish they'd let me test it.  It also seems that C is unlikely to cry when hungry as a rule since we've always fed him every 3 hours whether he is awake or not.  I hope he gets to demanding food soon, it would be helpful to know when he's ready to cluster feed for the evening.

I'm going to try to talk to the resident again, but I'm afraid that each time I do, I  prolong our stay here.  Maybe I'll try and work with my pediatrician to deal with this.  Though its a greater risk of cold/flu infection to go there.  *sigh*

We don't need no stinkin' pacemaker

C has decided he no longer needs the pace maker. So at 10 o'clock at night, he snapped the negative wire on the ventricle pacer.  The ventricle was the only thing being paced, so the pace maker became useless.  Worse, because it didn't have both the positive and negative wire, the pace maker was not sensing the beats and fired once per second.  C was screaming and our nurse kept saying "but it shouldn't be firing, he's not at 60 beats per minute".  TheMan said "I think by definition, broken means not working correctly".  The nurse went and got the resident on the floor who also stood looking at the pace maker.  I again pointed out the green pacing light was flsahing instead of the orange sensing light.  She decided (finally) to just turn the pacemaker off.  Silence fell as C stopped screaming since he was no longer getting shocked.  The lead up was a bit frustrating, but having the pace maker off is both nerve wracking  and fantastic.

Happy again!!

Our happy baby is back and he's flirting with anyone who gets within 20 feet of him!  Its been a pretty good day all around in the PICU.  A couple I've been talking to finally got some good news, another couple finally graduated to their floor and C is a happy baby.  This is a banner day.  Yesterday they turned the pacemaker down to 80 and let it act as a backup.  It still fired fairly regularly, so this morning they turned it down to 60 to see where his heart rate was going.  He's still running fairly slowly (heart rates in the high eighties to hundred-teens.  That's why we are still in the PICU.  Also, he's throwing PVCs like a crazy baby.  The alarm has been going almost non stop for hours.  But, his perfusion is good and his vitals are stable, so its really just annoying at this point.

The central line and arterial lines have been removed and a new peripheral line is in (only 2 sticks!).  All we really have left is the pacer wires and the drain.  Still enough that I can't change his diaper, but not nearly as overwhelming as it was!

Someday He'll Be Happy Again

Some days are harder than others.  After C was extubated Saturday night, I was feeling pretty good.  Sunday, during the day C got a bit fussy around 4pm.  Our nurse talked to the resident and they decided to change his pacemaker settings to see if that was the culprit.  I noticed C was a bit warm and asked them to take his temp.  They did, and it was a bit high so they took a bunch of cultures.  We're still waiting for those results.  We had the same night nurse last night as the night before.  She's not my favorite.  I like to know why things are being done and I like to feel welcome in my child's room.  Neither of those things happen with this nusrse.  She was very competent and she took good care of C, she just generally made me feel like she didn't want to talk to me or for me to be there.  When I left to go to the Ronald McDonald rooms for the night, I told the nurse to call if he needed me.  When I got back in the morning, she told me he'd been crying for 7 hours.  I'm not at all clear what about seven hours of crying didn't indicate that he needed me, but apparently it didn't.  To be fair, she tried a very large number of comfort measures, I just really wish she would have called me.  She is aware that I wished for a phone call, and tonight we have different nurse(s) -- one rock star of a nurse and the guy she's training.  The guy is pretty cool, but not baby savvy and I don't feel a real connection with him..

I spoke with the nurse practicioner who spoke with the cardiac electrophysiologist and he's not comfortable making a call regarding the JET and the heart block until we've weaned of the amiodarone.  It causes heart block and can do other weird things, so he'd like us to be totally off that for a bit then decide if C needs a pace maker.

C continued to cry for most of the day and into the evening.  We've now got him in the crib which is angled in a bouncy seat which is angled with towels behind him to get him to sit up further.  He seems relatively content at this time, but still not my happy boy.  I have to keep reminding myself that this is not forever and he will be happy again, someday.  Just not today.

Post Op Day 4 & 5

Early on Saturday, C shared his view of ventilators specifically and the situation in general:

Saturday Evening at 10pm C was extubated *YAY!*

C is still experiencing JET and I found out during rounds that he actually has some heart block going on too.  We will be in the PICU until the JET/heart block goes away or we get a pacemaker.

Nightly Update: Day 3 Post Op

First, can I say it in no way seems as if its only been three days since C had surgery?!  It feels like it has been FOREVER!  They cut out the sedation and pain meds along with the paralytics so C is a tiny bit awake.  In substantive terms, this means he wiggles, and his fingers will curl around my finger.  It also means he's in baby restraints, but it doesn't bother me as much as they seem to think it would.  The last thing I'd want is for him to remove one of the tubes or wires that are working to get him better right now.  He's eating 12 ml/hr now on continuous feed.  They are weaning down the Nitric Oxide and weaning on the vent as well.  The drain is down to using bulb suction instead of the big suction device because he's got so little drainage now.  He continues to go in and out of JET but he's tolerating it for the most part.  He's being paced at 140 now, but when he gets into one of his JET spells and can't get out of it, they sometimes bump him to 150.  This is better than the 170 he was at, and I have to remind myself its only been three days and JET can take up to 14 to resolve.

I have asked the doctors to let me know when I should start worrying and until they say I should be concerned, I'm going to continue to just coast along.  On the suggestion of some other heart parents, I have brought along our video camera so we can take video of the first time we get to hold C again, I hope to be able to post it soon.  Technically, I'll have to find a way to have someone post it to my account for me, because the hospital network doesn't allow access to YouTube.

I dreamt last night that I went into C's hospital room and he smiled at me.  So when I woke up and realized that can't happen yet, it was really hard.  I miss my happy baby, and I have this vague guilt that I handed him over to feel all this pain.  I know we couldn't go much further as we were and I know the repair is the only direction we could go in, but there's no way to explain that to him, and I find that harder to take.

But every day there are fewer medicines, less tubes and more signs of life.  The progress helps.

I miss my baby

I miss my baby. C was so engaging and awake the night before his surgery.  He played and babbled and generally was a riot to hang out with.  He didn't go to sleep until after midnight.  He didn't go to sleep until after midnight and slept all the way to the hospital and through check in.  He didn't fuss about not being fed and was sweet and funny and cuddly.  My last view of him was him peering at me over the nurse's shoulder as she carried him off to the OR.

Now he's still and quiet.  For the first time since he came out of NICU we can't hold him.  They keep him cool because of the JET and we don't get to see his beautiful blue eyes.  I've hardly left his side from the day he was born until they walked him to surgery and it wasn't enough time.  There isn't enough time to make this separation OK.  Statistically, we'll be reunited. So I feel guilty for missing my baby.

There are moms I've shared and loved with online who don't get to see their babies again.  There are families in the PICU here who get terrible news.  I feel guilty for missing my baby and being sad, I know I should be grateful for how comparatively well things are going, but it is still hard and scary and I can't help but miss him.

Medical Update

The bad stuff: C continues to experience JET rhythms that break through the pacer's current rate.  Most of the other issues he's experiencing relate back to the underlying JET.  His urine output dips, he has occasional perfusion issues, he has some blood pressure issues and the ventricles aren't functioning quite the way we'd like to see them.

The good stuff:  C is being weaned off of the Nitric Oxide and the paralytics.  He's also being fed breast milk via NG tube.  He's currently receiving 3ml per hour continuous feed.

Post Surgery Pictures

C is being kept sedated and paralyzed while he heals.  He's on a ventilator and has a pacemaker.  This morning they had him pacing at about 170 to keep his heart beating above the JET he has been experiencing.  This evening its down to 150.

Day 2 Morning Update

C's heart continues to slip into an arrhythmia called Junctional Ectopic Tachycardia (JET), this sometimes happens after open heart surgery. C's getting amiodarone and some extra bolous fluids every once in a while to help. They are also pacing his heart with an external pace maker.  He's currently being paced at about 160bpm to keep his heart beating faster than the level where they are seeing the JET occur. They had to add a mild diuretic because his urine output decreased a bit with all this heart stuff.  But they say he continues to profuse well even when in JET, which is apparently a good thing.  We aren't even 24 hours post-op yet and we did have a pulmonary hypertensive crisis in the OR so he'll stay sedated and paralyzed again today.

Late night/Early Morning Update - Day 2ish

When TheMan and I went by to drop off milk at 11 before we went to bed, there were a few people in C's room.  He's been having episodes of a concerning heart rhythm called Junctional Ectopic Tachycardia (JET).  They were working to use the pacemaker to get his heart beating faster than would allow for the JET.  I just got back from my 4am pump and he's doing much better according to his nurse.  We'll be better able to understand what is going on after a bit more sleep.  C looks good otherwise.