Getting our groove on

Hi everyone.  We’ve had a good week overall.  Jacob’s been home for just over a week now, and we’re getting into a groove.  Charlie and Sammy are doing their things in the hospital and we’re getting closer to hiring a nanny.

Let’s start with Jacob.  He had visits from the John Muir Home Health nurse on Sunday and Dr. Nash on Tuesday.  He weighed about the same for each visit: 5 pounds, 8oz.  Dr. Nash’s scale had him slightly higher at 5, 8.5.

Monday I had to travel for the day to Los Angeles, so Kristen had him on her own for about 19 hours.  Overall she did really well, and so did he.  I know Kristen was completely wiped out though, and when I got him at 12am, I took over “watch” through the night so Kristen could get some better sleep.

We kept the dogs downstairs with me and that has really helped them get used to Jacob being in the house.  Finley is still extremely excited, but they’re not doing nearly the whining they’ve been doing.  They’re still fascinated by him though, so we share that with Finley.  Sophie’s barely interested and is enjoying all the distraction, since that means Finley’s food is left alone and Sophie can sneak in and eat it.  I think Sophie’s had 2 breakfasts and 2 dinners at least twice this week.

We filled our first Diaper Genie bag; Approximately 40 diapers!

Jacob didn’t poop the first few days we had him and then on Thursday night he proceeded to fill three diapers around midnight.  It must have felt so good.  He regularly “toots” throughout the day.  Kristen calls him “Toots McGee.”  There may not be much poop, but diaper changes are a regular occurrence – every three hours.  This week we filled up our first Diaper Genie bag.  If this is what we get from one boy in a week, I can’t imagine what it’s going to be like with three boys in the house!

We’re having fun with him home and we think he’s growing a lot.  We’ve upped his feedings to about 2.5oz, or about 75mL, though on Saturday morning he took on 90mL, or 3oz.


On Saturday morning, Charlie clocked in at 2640 grams, or 5 pounds, 13 ounces.  He’s gaining weight quickly.  The doctors have him on 24-calorie formula to help him grow faster, which should produce better lungs.

IMG_7764Last Sunday, Aunt Jamie and I gave Charlie a bath and it turned out to be a total fail.  We didn’t get the cheese on his neck folds or under his arms.  It left him as a stinky boy.  They nurses fixed the problem.Now we know better.

Charlie is back on the Vapotherm machine, at 2 liters per minute and 21% oxygen.  This is as low as the unit will go.  So it’s just providing some air to help give him a little help in breathing.  He’s had a lung that’s not fully inflated, so this help isn’t a bad thing.  He’s definitely breathing a bit slower now, which is good.  He’s having fewer desats too.

Charlie’s been doing better with his bottle feedings.  He’s moved from Pathway A to Pathway C, which is 4-6 bottles per day when cues are present.  The nurse on Saturday morning thinks he’ll be on this Pathway for quite some time.  I was thinking he’d be home next weekend, but maybe not.



Sammy’s looking better, though he’s still a bit puffy, and he’s still on his VapoTherm machine.  He’s now 6 pounds, 2 ounces as of Saturday morning.  He’s growing so big because they are feeding him 27-calorie formula.  Similar to Charlie, the idea is to get him growing as fast as possible and that will help his lung function.

He’s still getting anywhere from 24% – 35% oxygen on a daily basis.  When he’s on his tummy, about an hour after feeding, he’s at the lowest range.  He’s at the higher range when he’s on his back shortly after a feeding.  The little guy just needs more time.

On Friday, he had another round of Lasix, the diuretic drug. This is designed to help reduce some of the puffiness that we see, and as of Saturday morning it’s working.  But his immature lungs are likely to cause fluid buildup, and swelling, again, so he’s likely to get another dose in a week or two.


We’ve made a lot of progress in our search for a nanny.  On Saturday we found somebody we think we like.  Now it’s just a matter of putting her through a “test” day, doing a background check and hopefully she’ll be hired by next weekend.

This coming week, I’m off to Miami for 3 days, 2 nights for some business meetings.  The good news is I’ll get to see my dad and have some good Cuban food.  You can’t get that here in the Bay area.  While I’m gone, Kristen’s mom, Karen, will take a few days to come up and help out.  Then I’m going to take the week of February 8th off to help get caught up on things.

Some pictures:


Exhausted, but for the wrong reasons

Jacob had been home for 3 nights now and he’s been great.  He eats and pees about every three hours – sometimes more, sometimes less.  He cries but it seems limited to only when he has a wet diaper or when he’s hungry.  So things are going well from that perspective.

Still, we’re having trouble.   It’s the girls in our life that are causing the problem; namely Finley and Sophie.  These dogs have been completely crazy since we brought home Jacob.  Especially Finley.  She can’t seem to get enough of him, wanting to lick his hand, ear, face – even his hair.  Sophie only seems to get spun up when Finley does.  So that’s made for three nights with limited sleep.  I’ve slept better than Kristen, and she’s only getting about 3-4 hours per 24-hour period.

Travel took me to LA for the day, but I’m headed home on the last flight of the night.  I’ll take some Jacob duty for a bit and then try to sleep before a 7am video call.  Ugh!  Time for me to start planning some time off.


Samuel (top) and Charlie
 Charlie is back on the Vapotherm machine, but just at the lowest setting.  The doctor suggested he go back on to help him breathe a bit easier while he’s learning the bottle.  He’s now at Pathway B and he’s doing well.  Today he took 100% of a bottle for the speech therapist, who hasn’t been able to get him this far before.  So I would guess Charlie could come home sometime late next week.

Samuel’s doing good.  He had a bath on Sunday and he pooped in his bath bucket.  That was an interesting experience.  While I cleaned that out he pooped some more for Kristen and nurse Emily.  He was a disaster!  Pretty funny though!

That’s it for now!  Off to board my plane!

Here comes Jacob!

Jacob goes home

Friday, January 22nd was a good day for the Mazza family.  Jacob Todd Mazza came home today.

Jacob’s first graduation!  All the nurses signed the certificate.  We couldn’t have done this without them!

Jacob is just 37-weeks-old, gestationally, so he’s still three weeks premature.   It’s been 6.5 weeks since he was born.  He’s advanced really quickly with his breathing and his feeding, and now he takes bottles like a champion.  He came home at 5 pounds, 7 ounces.  He had an eye test Friday morning and his eyes are fine.  We need to go back in two weeks for another test.  Dr. Nash, our pediatrician, will make a house call to visit Jacob on Tuesday at 12:45p.  A nurse from John Muir hospital will come see him on Sunday sometime.

Jacob does his car seat test.

On Wednesday he passed his car seat test.  This is a test where they place him in the car seat for 90 minutes to ensure he doesn’t have any of the A’s, B’s or D’s (Apnea, Bradycardia’s or Desaturations).  He was a little upset at first, but the minute I took out my camera to take some video of all the screaming, he fell asleep.  It was funny as it took about 30 seconds flat to go from screaming baby to out cold.

We believe we’re prepared at home.  The boys’ room has been done for quite some time.  This week we got some formula and Dr. Brown’s bottles (special thanks to fellow triplet parents Laura and Charles for the recommendation) and then fellow triplet father Paul Kahalewai, from Petaluma, CA, shipped us 48 bottles of formula that he got from his Similac rep, and about 100 slow-flow nipples.  (Thanks Paul!!)

I’m pretty sure Kristen is going to move into the boys room to be with Jacob, or she’ll move one of the Rock’n Plays into the guest room, and she’ll stay in there with him. Or she’ll stay downstairs on the sofa while he’s in the Pack’n Play.   We both have to get comfortable with him being home, and being new parents we’re going to be a little over-the-top for a while.  Better to do this with one and then add a second in a few weeks, and then a third a few weeks later.

When we walked in the door on Friday, Finley and Sophie were very happy to see their new brothers.  Finley has been going crazy the entire evening.  She was able to come see him and give him a few “kisses”.  Sophie’s just excited because Finley is.  It will be tough giving the the same attention level they’ve gotten in the past, especially from Kristen.

Charlie takes a full bottle

While Jacob is home, Charlie’s likely a week or two away.  This week he took his first full bottle.  That’s 60mL of fluid, or 2oz.  He’s still on Pathway A and he has to get to Pathway E before he can go home.

The Pathway system at John Muir is a steady acceleration of taking bottles and relying less and less on the feeding tubes.  Pathway A is trying the bottle out when they show cues, and they graduate to Pathway B when they’ve taken at least 75% of two bottles over a 24-hour period.  They graduate Pathway E when the feeding tube is out and they can reliably take all their feedings on bottles or breastfeeding.

Charlie has been on Pathway A for almost 3 weeks now.  He’s still breathing a bit fast, and a baby really can’t take a bottle well when he’s breathing really fast.  So his lungs just have a bit more maturing to do and we’ll try him on the bottle here and there.  Once he gets the hang of the feeding and his breathing is more in order, he can go from Pathway A to Pathway E in about a week.  My prediction is it will be another two weeks before Charlie comes home.

Otherwise he’s doing pretty well.  On Friday he weighed 5 pounds, 2 ounces, so he’s gaining weight quickly.  He had an eye exam on Friday too, and all is good.


Samuel continues to make good progress.  He’s crossed the 5 pound mark too, coming in right there.  He definitely looks healthier and we’re optimistically seeing signs that his lungs are developing.  His challenge isn’t so much breathing, but it’s getting quality oxygen to saturate his blood supply.  This is why he gets these “desats”.  The Vapotherm machine pumps somewhere between 21% and 35% pure oxygen into him to help ensure he remains saturated.  As his lungs develop, he’ll be able to do this on his own.

This week Sammy’s Vapotherm needs have steadily declined.  When we called on Thursday morning to check on the boys, he had spent most of the night between 23% and 28%, and the nurse kept lowering it.  I held him for almost 90 minutes on Thursday and he had slight desats, but overall he was doing well and seemed comfortable.  The nurse actually took the monitor off his foot and put it on his arm, and his stats shot up even better.

When he’s laying in his incubator (Isolette, as I’m now told) he seems to do better on his left side or on his belly.  His PDA isn’t believed to be an issue anymore.  He opens his eyes a lot more and he’s constantly looking around at what’s going on.  There’s almost no crying at all.  We’re not sure if this is because he’s getting so much oxygen and the feeding tube is down his throat, or if he’s just even-keeled.  Time will tell!

It’s not really a decision, but we’ve all but stopped the breastfeeding.  Instead Kristen will focus on pumping and giving breastmilk through a bottle.  It’s just too difficult to try and breastfeed all three babies.

Jacob’s toe

I’ve mentioned to many family members about Jacob’s wonky toe.  For the record, wonky means “crooked; off-center; askew” on Google.

It’s the “ring” toe on his right foot.  We thought it may correct itself by now, but it doesn’t seem to be moving.  It’s really not a big deal at all.  I’ll bet he becomes a fast runner, in fact.  Pretty cool feature to have on my boy.  I wish I had this to match him!

What a difference a week makes

I’m back from my travels.  I spent the past five business days on the road, with stops in Chicago, Boston, NYC and Atlanta.  But the best stop of the week for me is back in Walnut Creek, CA to hang with my boys.

The boys had an up-and-down week, as usual.  This week was a bit scary for Samuel.  Let’s start there.


On Tuesday afternoon, as I was flying from Chicago to Boston, Samuel had an episode where he had his typical reflux.  But as the milk came back up, he was not able to turn his head and eject it from his body.  Instead he started gagging on it and it caused him to choke and stop breathing.  The heart rate monitor went from normal (~150-160 bpm) to ~7 to flat-line.

Kristen witnessed all this from the monitor while holding Charlie.  Sometimes the cables on the monitors become detached, but she knew this was real when the nurse ran in and then called for help to others.  The nurse told me they never had to do any chest compressions to restart his heart beat, and once they were able to clear his airway, he was able to start breathing again.  They took steps to empty everything from his stomach, and made sure no milk made its way into his lungs.  They’ve been watching closely the past few days for infection, but he seems OK.

The whole episode scared the bejesus out of Kristen, and of course me.  I felt bad for Samuel that it happened and he’s having such a rough time, bad for Kristen that I wasn’t there for her and just miserable that I couldn’t do anything about it.  Needless to say, I didn’t sleep well Tuesday night.

Sammy was doing great on Saturday morning!

The doctor and nurses have changed Samuel’s feeding to a continuous feeding, where they drip the food in via gavage over a 4-hour window.  So it goes very slowly now.  They also gave him Lasix, a diuretic to try and rid him of some puffiness.

As of Saturday morning, he’s doing much better.  He still has desats on a regular basis, but they’ve taken him off the CPAP and put him on a large cannula Vapotherm, with 4 liters per minute of flow, at 24% – 34% oxygen.  The CPAP mask just isn’t making a good seal.

I have to say that he looks like he’s grown a ton.  He had his eyes wide open this morning and his face and body are looking fuller.  We just need to continue to be really patient as he works his way through it.  The nurses continue to tell us that if there’s any abnormality, it’s with Jacob and Charlie doing so well.  Remember, we’re only just more than 36-weeks old gestationally, with almost four weeks to go before their 40-week due date.

Special thanks to my mother-in-law, Karen, for dropping everything and driving to be with Kristen on Wednesday.  That meant I didn’t have to interrupt my business trip and go home early.  I’m glad Kristen had some help and support.  And frankly she’s been wanting to come up and see the boys anyway, so I’m sure it wasn’t too much of a twist of the arm.

As of Saturday, Samuel weighs 4 pounds, 7oz.  They say he went backwards from yesterday, but they attribute 4 or 5 ounces to the CPAP mask and hat that we was wearing.  They did another echo to check his PDA and the good news is it’s now half the size it was before.  The doctor estimates it’s just 1.5mm.  Before it was 3.0mm.  Finally, Samuel had his “top popped” meaning he’s no longer under the heat in his “isolette” (aka incubator).


Grandma Karen holds Charlie while Grandpa Rick looks on.

Charlie has moved to his big-boy bed (i.e. the bassinet) and continues to do well.  He’s still on Level A in the Pathways system, which means he’s not doing great on the bottle.  The nurses say he’s still breathing a bit fast, which makes it hard to breathe when taking a bottle.  They’re really conscious of doing it on his schedule under his conditions, because they don’t want the bottle feeding to be a miserable experience.  So they try here and there, and he’s doing OK.  This morning he took about 40% of a bottle, whereas last night he took just 4ml – not enough for them to even count it as a try.  He continues to get the gavage feedings.

Charlie is up to 4 pounds, 11.4oz this morning.  So he’s gone from the smallest baby to the second largest.  Samuel weighs less, but Samuel physically looks bigger.

Charlie had his hearing test this week, which Kristen reports he passed with flying colors.  Apparently they hook up monitors to his head and look for brainwave activity as they do the test.  I’m glad he’s able to hear well.  A speech therapist came by as well this week to look at his mouth since he’s not taking his bottle so well.  They suggested a different low-flow nipple, but confirmed there are no issues with his mouth.  So we’ve given him feedings with this nipple.

Saturday was bath day, so I got better video of Charlie’s bath, since my mother didn’t like the short video last week.


Jacob also got a hearing test this week and also passed.  No issues there.

On Thursday, Kristen got a call from Dr. Nash, our pediatrician, who said he wanted to come by and do the circumcision for Jacob and Charlie.  Dr. Wei, the neonatologist had called him and said both boys weren’t far from being released.  Our preference is to have it done in the hospital before their release. Dr. Nash said Jacob was ready for the procedure, but Charlie needed a bit more growth before they took anything away.  (Kristen’s always making fun of Charlie’s penis and how small it is.  Poor baby boy.  It’s not THAT small… he is a Mazza after all!)

Kristen and mom both liked Dr. Nash’s jokes.  For example:

Dr. Nash:  How much does Jacob weigh?

Kristen:  He’s right at five pounds now.

Dr. Nash: Not for long.  He’ll weigh a lot less when I’m done!

Kristen said Jacob took the circumcision like a champ and barely fussed.  When he did, they gave him some sugar water and it calmed him right down.  It will take a week or so for him to heal.  It’s a bit painful for him to pee.  He was really crying this morning, for example, and as I was changing his diaper, he peed all over the place (the wall, my hand, his clothes, his own hand, etc.), but he stopped crying immediately.  I guess it was just painful.  Glad to know the equipment still works though.  Good job Dr. Nash!

Jacob gets a bottle on Saturday morning.

Jacob has been on 100% bottle and breast feedings now for several days.  He pulled out his feeding tube a few days ago and they left it out since he’s taking the feedings so well.  The nurse told me this morning he seems to like the same nipple that Charlie is using.  It’s causing less air to get into the bottle and he’s able to go further without burping.  He’s just more comfortable with that.  We’re also taking the advice from our friends Laura and Charles, who suggested we use Dr. Brown’s bottles.  So we’ve ordered some of those.  We’ll pickup a few today at Buy Buy Baby, along with a supply of formula.

Jacob is on “Pathway E” – the final step. And today we brought a carseat in for his carseat test.  He’ll have to sit in the carseat for 90 minutes while maintaining his heart rate and oxygen levels.  Kristen and I will attend a discharge class on Sunday afternoon.  If the carseat test goes well, and he continues to take his feedings without the need for a tube, AND continues with no A’s B’s and D’s, he is scheduled to go home this week.  Yahoo!!!  It’s about to get real!

Finally, Jacob had his final ultrasound on his head, to check for any bleeding and they did an echo to check his PDA.  It’s closed, though there’s a faint murmur still, but no cardiac follow up is needed.

That’s it for this week.  It should be an exciting week if we can bring Jacob home this week, and Jacob will come home as soon as he learns to feed properly.


1 Month Old

Just like the annoying parents you love to hate, we’re going to be those people who celebrate small milestones like their 1-Month birthday.  That’s today, January 9th. To celebrate the day we stopped by the hospital for several hours this morning and gave all three boys their weekly bath.

Samuel was first and got a scrub-down bath because of all the CPAP gear on his head.  He tolerated it really well and no desats for him.  Kristen was leaning in and just as I warned her to be careful in case he starts to pee, he peed all over the place.  He didn’t get Kristen though.

We changed out his heart monitors and pulse ox monitor and got him settled back in with a new diaper.  He’s not out of the woods but certainly is doing better.  We think Sammy will be the biggest of the boys. His hands are noticeably bigger than his brothers, and he just looks bigger in general.

Jacob was next and he got the warming lights brought in for his dunk in the bath.  He did well and seemed to enjoy the tub time.  Kristen got him all posed for his official 1-month pose and I got some video.


Charlie was third and he felt the need to show how his boy parts work too, almost peeing on Kristen.  We got him settled into the bucket for a quick bath and some photos.  He did very well too.

Dr. Wei stopped by to share results of the boys’ eye test from Friday morning.  An eye doctor did an inspection and the results were great.  The boys are exactly where they should be in their development.

After Kristen pumped we left for a night in Half Moon Bay.  This night was supposed to happen about a month ago, but better late than never.  It will be our last night away together for a while.

I won’t have many posts this coming week because of my business trip.  I’ll miss the boys terribly but I’m looking forward to coming home and seeing them next weekend.


Week 4 Update

When I was younger, I used to like to go on roller coasters.  They were lots of fun and the faster and steeper they went, the better it was.  You’d get a rush of adrenaline, and you’d want to go right back on again, even if waiting in the line another hour.

Kristen and I both want off the current roller coaster we’re on with Samuel.  It’s emotionally draining and physically exhausting.  There’s no adrenaline rush – just some tears and sadness as our little boy works hard the first month of his life.  We get enjoyment out of spending time with him, but we just want him to get better and out of these ups and downs.

Today is Week 4 since the boys were born, and while Jacob and Charlie continue to make positive strides forward, it’s a two steps forward, 1.5 steps backwards for Samuel.


Let’s start with Sammy.  He’s weighing in at 3 pounds, 14 oz yesterday.  Today he gained 150 grams (5oz.), which is all but impossible. We know it’s one of the side effects from his up-and-down week:

  • Heavy breathing and looking uncomfortable
  • A three-day treatment of Indomethacin to treat his PDA.
  • Not eating / getting any milk during the Indomethacin treatment.
  • Getting an IV to get nutrition and fluids while not eating.
  • Not peeing because of the Indomethacin
  • Getting a treatment of Lasix (a diuretic) to help reduce the fluid that’s built up because of the IV and not peeing.
  • Being put back on the CPAP machine because of the fluid build up.
  • Being taken off the CPAP machine and back to Vapotherm.
  • Needing 55% oxygen on Vapotherm, so going back to CPAP
  • Having blood pulled to check for any infections.
  • Getting an injection of antibiotics in case there’s an infection in his lungs from all the fluid buildup.
  • Having a steady supply of eye gunk.
  • Getting stuck with a needle so many times, the nurses are running out of veins to stick.

I had some words (stern, though not angry words) with the doctors this morning, as Kristen and I are frustrated with what seems to be an inconsistent plan of care.  We continue to encounter a slew of doctors who all take different approaches, and it seems that sometimes the doctors take actions that are counter to what another doctor had prescribed, or told us.  They all have their own approach to medicine.

You would think we’d see the same doctor or doctors on a regular basis, and it’s been anything but.  I’m not sure how many neonatologists work at John Muir Walnut Creek, but I can count at least 8 different doctors over the past four weeks

We’re very close to this situation and frustrated to see Samuel not make the progress we think he should be making, though that progress may be unfair on a day-to-day basis.  He is a premature baby not even 35 weeks old gestationally.  It’s also just sad to see him looking so sad and tired.  Sometimes no news from the doctor may be better.

One doctor told us the Indomethacin showed a 0.5mm reduction in the PDA.  It’s now down to 2.5mm, from 3.0mm.  He said the cardiologist told him if she saw a baby with 2.5mm PDA, she wouldn’t take any action at all and just would let it heal.  A prior doctor told us normal for newborns is 1.5mm to 1.8mm.  A doctor this morning said it was sealed enough to make a difference in the murmur.

If you pull out a ruler and remember that 10mm = 1cm, you can see how 3.0 to 2.5mm looks like next to nothing.  I guess it makes some level of difference though.  We just have to do more waiting for a few days before they decide if it truly is behind us as a problem or not.

When I left the hospital on Wednesday night, his IV was leaking and the nurses needed to put a new one in.  It took them about 15 minutes to find a suitable vein.  He handled all he poking and prodding like a champ though.  That boy is going to be golden and get whatever he wants for a while.  I keep promising him an extra scoop of ice cream.  That’s a promise I’ll keep.  (Also for the record, my dad, David Mazza, promised to become a Miami Dolphins fan when Sammy gets well.  We will all get together next year and watch a Dolphins game.  It’s amazing how a 4-week old boy can make him a Fins fan, something his 40-something son couldn’t ever do).


Jacob graduates from his incubator to a bassinet.

Jacob is now at 4 pounds, 2oz.  He’s now out of his incubator and is into a bassinet.  He’s getting some good feedings, and he’s practicing his breastfeeding with Kristen, and his bottle feeding with me, Kristen and the nurses.  I’m told last night he took 44% of one feed via bottle.  That’s outstanding progress.  He has a ways to go on the feeding, but I expect over the next two weeks he’ll become a champ.  Feeding on his own is the last major hurdle he  has to pass before he comes home, since he can already maintain his temperature on his own, and he’s at the minimum weight for the car seat.

Kristen did tell me that Jacob had a nice reflux episode today.  Reflux for these newborns is a complete vomit of their breastmilk.  Now that we’re dressing him in some outfits, I’m discovering why we need more zipper outfits than snaps.


Charlie is now 3 pounds, 12oz.  He’s still the smallest boy, but he’s doing quite well.  He’s now able to maintain his temperature comfortably, so his top is popped permanently, and he’s getting dressed in clothes now too.  He only has his heart monitors, pulse-ox monitor and feeding tube connecting him, just like Jacob.  Charlie’s also practicing his breastfeeding and bottle feeding.  The nurse tells me he took 29% of one feeding at 3:30 this morning, and then the rest through the feeding tube.  He’s managing a few sucks and swallows when Kristen breastfeeds him, so he’s getting the hang of it.

Kristen said just as Jacob had his reflux episode, Charlie joined in, destroying his outfit with vomit.  Oh well!  I guess we’ll be doing laundry forever.


I posted an ad on for a nanny.  We decided it’s time to start the interviewing and hiring process, so when the boys come home we have somebody we can start with quickly.  We’ll break them in with Jacob when he gets home (my prediction:  The week of the 18th.) and then Charlie (my prediction: The week of the 25th).  Samuel may not be home with us until early Feb.

On Saturday, Kristen and I will go to the hospital in the morning, and then we’re going to Half Moon Bay for an evening at the Ritz Carlton, and a nice dinner out.  This was the baby moon we had planned for the weekend that she went into the hospital at the 24-week mark, so we’re making it up.  We have to, since we have gift certificates that are only good at a Ritz Carlton!  We’ll be back to the hospital on Sunday.

Finally, next week I’m likely to have a delayed update since I’m traveling for work.  I’ll be in Chicago, Boston, New York and Atlanta over a 4-day period.  I literally wake up, go to meetings until 3pm each day and then head to the airport to fly to the next city.  Brutal!  Even more brutal that I won’t be able to see my boys other than on FaceTime.

The Comeback Kid

It’s Monday night and I’m in with the boys.  Kristen took the early shift today. I had to work the entire day, so I ate dinner, got a download from Kristen, and then headed over to the hospital.

I can describe Samuel as the comeback kid now. It certainly too soon to claim victory, but just looking at that little boy…you can see he’s a new man!  

He’s had 2 rounds of Indomethicin already, with the third and final dose to be administered at 10pm tonight.  He’s breathing much more comfortably and he’s not only off the CPAP machine, he’s back on the Vapotherm at 4 liters and 24% oxygen.  And he’s on his back.  

By comparison, last Wednesday he was breathing well over 100 breaths per minute, on 4 liters at 35%-40% oxygen and on his stomach.  He looked defeated.

Now he’s resting like a grown man taking a nap!  I even told the nurse he looks healthier.  His skin just seems to fit him better now and his face seems fuller.  Part of that could be the IV fluid, but I prefer to think its him getting healthier.

The doctor had ordered another echo for Tuesday and we’ll then talk about the results.  Hopefully the echo validates what we’re seeing.  We’re just so happy he appears to be doing much better.

Jacob and Charlie were moved into the same room today. Their room is a little bigger now and accommodates two babies. This is the room typically reserved for twins. It’s right next door to where Samuel is.

Tomorrow I’ll post another update after the echo.  But that will be likely later since we are having dinner with Laura and Charles Seidel, who just too took their triplets home from the same hospital!

Samuel update

Thanks for all the messages and phone calls of concern and love.  We take this stuff pretty hard but the nurses and doctors have made us feel like this is somewhat expected and part of the process, so nothing much to be concerned with.  Still, until Samuel’s breathing like Jacob and Charlie are we will still be concerned.

  On Saturday Samuel got a dose of Indomethicin and it seems to be working.  One of the telltale signs that it’s working is decreased urine output / reduced kidney function, and that’s what they’re seeing.  We haven’t talked to the doctor yet but we confirmed a second round of the drug is ordered.  Charlie had three rounds, for comparison.  I expect they’ll do the same with Sammy and then take another echo to see the difference.

Speaking of seeing the difference, he looks sad with his CPAP mask on but he also looks tremendously more relaxed in his breathing.  His chest retractions are greatly reduced and he’s definitely more comfortable.
 Jacob hit the 4-pound mark today.  He’s breastfeeding when Kristen is here and he’s practicing with a bottle too.  Yesterday he took 10mL.  Jacob got a bath yesterday too.

Charlie gets his bath today.  He’s also practicing with a bottle.  He had his top popped for a bit but he got cold yesterday so it’s down again.  They’ll try him in a day or so when he gains another ounce or two.

We’ll have another update on Samuel in a couple days.

Life in the NICU is a roller coaster

Kristen and I usually spend between 4 and 8 hours per day in the NICU.  Most of that time is spent holding the boys, changing diapers, giving baths and talking with nurses and doctors about progress.  It’s great to see the daily progress with Jacob and Charlie, but it’s been frustrating to see Samuel not making the same progress.

Samuel was making some progress but this week he’s slipped back again.  He’s gone from 3 liters and 24% or 25% oxygen on the Vapotherm machine on Tuesday, to 37% oxygen and back to the CPAP machine today.  That’s a few steps backwards.  Sammy’s had a terrible time breathing and it’s been getting worse the past few days.  They did an X-Ray on Thursday and it showed a lot more “cloudy” conditions in his chest, meaning more fluid.

The ordered some dieuretics and started those on Thursday.  But after 2 days there was no noticeable change.  

Today they did  an echo and found he’s getting even worse.  The PDA is still quite large and the he’s getting a lot of blood flow to his lungs, which makes him work really hard.  The left side of his heart is working far harder than the right because of the PDA.

So now we’re moving on to Indomethicin.  This is the same drug they gave Charlie about 2 weeks ago.

The older the child is, the less-effective Indomethicin is.  We’ve been asking for several days as far as when we’d get this drug administered, and the doctor’s have been uniform in the fact that “wait and see” has been the best course of action.  But it’s clear now that Sammy is telling them this treatment plan so far is not working.  So Dr. Mikas asked if they can administer this.  We talked about risks, success factors and everything else and the short answer is this is Sammy’s best hope for help, outside of heart surgery.

We should know more about how this will work on Monday or Tuesday.  We’ll hope for good results with this treatment.  Hopefully this gets the roller coaster headed back up again.