Happy Memorial Day!

Happy Memorial Day everyone!  Kristen is out at the mall, Samuel’s eating his lunch and Jacob is sleeping off his milk coma from his early lunch.  So I thought I’d take a few minutes and get caught up on the blog.

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Who can pass up a chance to snuggle with these boys?

We’re kind of into a normal rhythm at this point with the boys.  Our days are fairly regular though we live our lives in three-hour increments.  One of my friends asked me the other day what my Memorial Day plans were, and I just kind of laughed.  We don’t plan anything more than about three hours from now.

Samuel’s growing well.  He’s getting close to 13 pounds now.  Earlier in the week we felt like he was coming down with another cold as he’s been coughing worse than normal, and he’s been stuffed up.  We took him to see Dr. Nash on Tuesday and just to be on the safe side, Dr. Nash put him on Amoxycillin twice per day, but I don’t think he’s got anything that will help with.  Most of his mucous is thin and clear, with some occasional yellow.  Last night he seems to be doing better.  We moved him into our room again last Monday, but I think tonight we’ll put him back in his own room with the video monitor back on him.

He’s doing a lot of smiling these days, and he’s happy to spend time with mommy and daddy.  He also loves hanging out with Stevie.  We haven’t spent a lot of time on tummy time with him this week, just because of his mucous situation.  But we’ll get back to that this week.  Still, his neck is getting noticeably stronger, but he has a long way to go.

Jacob is a great baby, though he’s a handful.  He’s gotten used to be held all the time, so he’s not really good at occupying himself and keeping himself entertained.  I’ve started leaving him a bit more in his rock and play to cry it out, but after 5 minutes or so I cave in and go get him.

He’s drinking about 180mL per feeding – almost 6 ounces – but he doesn’t do that well for daddy.  He kills it with Stevie and mommy though.  Maybe they have more patience.  He’s also really good at determining when mommy, daddy or Stevie are comfortable, and then he cries to make sure we get up and move around during the feeding.  He likes to bounce and rock most of the day – during his feedings too.  So if you’re too comfortable, he’ll make you uncomfortable quickly.

I’ve also learned that I should only wear t-shirts and nothing fancy when I’m on baby duty – which is almost always.  Its a regular occurrence for me to wear some of Jacob’s food after it’s been in his stomach.  Jacob vomits on me about twice per day now.  Samuel doesn’t vomit at all, of course, because of his Nissen Fundoplication procedure.  It seems to be working well!

We’re scheduled to have some pictures taken on June 11th, and next weekend we may venture down to the community pool.  We’ll make sure we take them after they poop for the day, and we’ll get some special water diapers meant for the pool.  It should be a fun new experience, and at this point I’m in favor of anything that will get us out of the house.

OK, well it’s time to go make some more formula.  These boys won’t stay still for long and I need to use my available time wisely.  Here are some pictures from the past week or so.  I’ll add more later when Kristen gets home.

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Jacob loves his teething toy, which looks like a banana-shaped toothbrush.
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Jamie came over on Saturday and brought steaks and veggies. So we grilled and ate outside, since the weather was perfect. Thanks Jamie! Come back anytime!
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Jacob after one of his bottles in his typical milk-coma pose.
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Samuel had the biggest diaper of all time this week. It covered his boy parts and was clear up to his belly button. Of course he didn’t go the day before, so this wasn’t entirely unexpected. I had to wear gloves for this “Brown Out.”
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Our family room has turned into a nursery. Sammy gets lots of feedings in this swing. You can see his feeding bags, and his oxygen machine.
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The right side of the family room has lots of equipment too. Don’t ask why there’s a picture of the Great Wall of China on the TV.
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Charlie’s cause of death

Thursday marked the 90-day mark from when Charlie died, on February 19th.  The Contra Costa County Coroner told us that a typical autopsy and final report on cause of death would take 60-90 days.  Then last month they warned the number of deaths was high, and there’s only one pathologist working on all these, so it could take even longer.  But we got the call on Friday afternoon, on Day 91, that the cause of death was now known.

Charlie’s official cause of death is Sudden Cardiorespiratory Arrest due to Bronchopulmonary dysplasia due to Prematurity.  Essentially his heart stopped suddenly because of his chronic lung disease, or underdeveloped lungs.  I’m still unclear whether I could have done something faster or different to save him.

Deputy Wong, the inspector for our case from the Coroner’s office, said there’s a lot more information in the report from the pathologist and we could get a copy of the report in about two weeks.  For now we’re going to bone up on exactly what this means.

When we get the report, we’ll likely try and setup time with the Neonatologists at Walnut Creek to see if they can break it down in laymens terms for us.  They may learn something from it as well that can help future babies in a similar situation.

This is the start of process of understanding this all. On the one hand, I’m glad they were able to pinpoint something.  We were somewhat expecting a generic “SIDS” classification, which wouldn’t really explain much.  On the other hand, I’m now concerned on what this may mean for Jacob and Samuel, and if they may be susceptible to anything.

 

The latest from the Mazza’s

Hi everyone.  I apologize as it’s been a while since I last posted a blog.  But we’ve been a little busy!

Samuel has been home now for just past two weeks and he’s doing great.  The first few days, he had a surprised look on his face and I’m sure he wasn’t really clear on where he was, what was going on, etc.  But he quickly settled in and he’s really going through some good changes that are noticeable by all.

First, he’s smiling a lot more.  It doesn’t take much to get him to put a grin on his face.  He’s also a lot more active and playing with his toys quite a bit during the day.  He still sleeps a good portion of the day, which is needed for development, but we like to see him interacting so much.  He’s also cooing loudly, which seems to indicate his vocal cords are thinking about starting to act normal.  He’s still a quiet cryer, with little sound, and when he sleeps he has lots of grunt-like noises.

Both boys have their cribs in our bedroom, but earlier this week we decided that Samuel makes too much noise at night, so we moved him to his own room.  We setup a wireless camera that’s focused on him, and so we can see his pulse-ox monitor.

Speaking of that pulse-ox monitor, it goes off regularly, but it’s almost never related to a desat or brady.  Usually it alarms when there’s a bad signal or no signal.  He does get a little antsy and drop into the low 90s or high 80’s when he’s getting his diaper changed, or when he’s upset about something.  But otherwise he’s proving it’s not tremendously necessary.

We do notice that if we take his oxygen away, he does drop to max into the mid-90’s.  He’s only on 1/4 liter of flow per minute, which is the equivalent of about a cup of air being pumped into him  every 60 seconds.  It’s not much at all.  In fact I can’t even really feel it coming out of the oxygen machine.  But it seems to make a difference for him so we’ll keep it going and check it again in about a month.

Samuel’s feedings are proving to be really easy to administer.  We hook up him at 9am, 12pm, 3pm and 6pm for 80mL of formula that’s pumped into his belly over a 1-hour period.  Then at 9pm we put him to bed and set the machine to pump 465mL of food into him at 55mL per hour.  So that’s a continuous feed from 9pm – 6am the next morning.  He seems to take it ok, and his “button” is working well.  We keep it clean each day and we’ll get it changed out in a couple months.  We change his nasal cannula weekly and we change his feeding bag and venting bag daily.

We’re pretty sure both boys are teething now.  We can see inside Sammy’s mouth and it looks like it could be the start of a tooth coming through.  But we’re not certain.  He certainly drools a fair amount.   And Jacob drools a lot and is fairly cranky.  Dr. Nash says it’s not necessarily an indication of teething, but they could be.  Only time will tell.

Dr. Nash was over twice to see Samuel and to make sure everything was going well.  The first time he visited, on the 5th, Samuel weighed 11 pounds, 4 ounces.  Then just under a week later, he was 11 pounds, 10 ounces.  We also weighed Jacob on the 11th and he was 12 pounds, 10 ounces with all his clothes on.  We think he’s actually closer to 12 pounds 2 ounces.  Either way I think we’re to the point where we can take out his premie insert for his car seat.

We celebrated the boys’ 5-month birthday on the 9th and their adjusted 3-month birthday on the 12th.

Grandpa Dave and Grandma Melinda visited this week for a few days and had great fun holding and playing with the boys.  Grandpa Dave promises to come back for their 1-year birthday, and we’ll watch the Miami Dolphins game that weekend together, all cheering for the Dolphins.  This is significant, since my dad is a life-long Dolphins hater who promised Samuel that when he got healthy he’d change and become a fan.  I’m not so sold that he’ll be rooting for the Fins, but we’ll see.

Thursday marks three months since Charlie passed away.  I still haven’t heard anything from the Contra Costa County Medical Examiner about the cause of his death.  We think about him every day and miss him terribly.  Life is definitely not the same without him.

Anyway, we’re having as much fun with the boys as we can have, and I think the best thing to do at this point is just share a bunch of photos over the past two weeks. Enjoy!

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Kristen celebrates her first Mother’s Day with a nice picture with the boys.
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We celebrated five months on May 9th. Wow!
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Jacob and Samuel snuggle for a quick pic.
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Two tough guys. Who are you lookin’ at?
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Jacob’s all dressed up for work, but he invaded Sammy’s crib. That didn’t make Sammy happy.
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Play time one morning called for a photo.
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Grandpa Dave and Grandma Melinda bought the boys these golfing outfits. They’re ready to hit the course with their daddy!
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Time for both boys to sit on the couch. Jacob’s getting good at it. Sammy’s catching up quickly.
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This was snapped a moment later. Apparently Jacob didn’t like sitting up *that* much.
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Samuel having some fun with his mom. Great to see smiles like this from this little guy!
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Grandpa Dave tries to eat and hold Jacob at the same time. He did pretty good before Jacob erupted.
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Samuel’s first morning at home had him relaxing with some toys.

Sammy’s settling in at home

IMG_8303Samuel has only known hospitals his entire life.  He’s been there since December 9, 2015 when he was born.  But Tuesday, May 3, 2016 – 146 days later – Sammy finally came home!

I already got Kristen a great Mother’s Day gift – one she’ll love – but something tells me the real gift will be having her boys under one roof.

Samuel’s discharge actually started last Thursday when the paperwork got underway.  Doctors continued to evaluate him on Friday and over the weekend, and then on Monday we got a bunch of phone calls from medical supply companies telling us they needed to stop by and deliver things before he could be discharged.

 

On Thursday I learned how to use the gastric port for feedings.  It’s pretty straight forward, though it’s scary to learn how the “button” is anchored in his belly and the fact it can just fall out.  If it falls out, we have to take him to the emergency room so they can put it back in quickly, before the port hole closes.  They also will have to double-check via x-ray that the port is in the correct spot going to his tummy, and not going to another area.

In a few months, we’ll be able to take the button out on our own to replace it if necessary.  They said the button hole is similar to a hole made in your ear when getting an earring.  If you take the earring out too soon, the hole will close up.  But after a couple months, the hole will just stay open.

Anyway the feedings will be intimidating at first, but we’ll get there.  I found a good example posted on YouTube of how it works.  Unlike the video, though, we’ll be using a machine to do it instead of doing it manually.  You’ll get the point after the first few minutes.

On Tuesday afternoon we received Samuel’s equipment.  It consisted of three things: an oxygen generator, a pulse ox monitor and a feeding machine.

The oxygen generator is a large machine that looks like an air conditioning unit.  It has a 25-foot oxygen tube on it that connects to his nasal cannula.  We also got 6 oxygen tanks that we can take with us, and got training on how to use all.  They also delivered a pulse-ox monitor used to measure the amount of oxygen in his blood and his heart rate.  It goes around his foot.

Then a bit later we got Sammy’s food pump delivered.  He gets feedings at 9am, 12pm, 3pm and 6pm, and then beginning at 9pm he gets a continuous feed until 6am.  In total he’s getting about 27.5oz. per day, which is appropriate for his weight.  At this point, because of his surgeries and his vocal cord status, he’s not getting any feedings by mouth. We’re able to dip his pacifier into the formula so he can taste it, but that’s about it.

After we got all the equipment, we jumped in the car and raced over to Stanford to get him.  In fact we left so excited we forgot to bring his stroller and an outfit for him to wear.  We had to stop at Nordstrom’s in the Stanford Mall to get something he could wear home.  We did manage to bring his portable oxygen and pulse ox machine.

He had his final feeding a bit early – at 5:30 and then away we went!  He did awesome for his first car trip and barely made a peep.  Sammy’s Aunt Jamie stayed with Jacob after Stevie left, and she was there to document the event when we walked in the door.

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Sammy wasn’t really sure what the deal was with this car seat thing.
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Lots of smiles as we left the NICU for the last time!

It’s going to be so nice not having to drive to a hospital each day.  We can spend that time playing with him, making him stronger and getting him to know his brother.  We’ll have plenty of doctor’s visits in the coming days and weeks and we’ve learned already that hauling the pulse-ox, oxygen generator and his feeding machine around will be a challenge.  But we’re up for it!

Thank You

I want to thank all our family and friends – near and far – for their support, well-wishes, kind thoughts, prayers and even food deliveries!  The support and optimism has been amazing, and Sammy’s doing well because of it.

I also want to thank the nurses and doctors at John Muir Hospital in Walnut Creek.  Many of them are our friends now and it’s stunning to get calls and text messages from so many of them just wondering how Samuel was doing, long after he left.  We built some real relationships with them and they’re so sincere, not to mention great at their jobs.

We had our ups, downs and frustrations with Lucille Packard Children’s Hospital, but in the end they helped Samuel recover from his Rhinovirus and get healthy enough to come home.  And of course the folks at Benioff Children’s Hospital got his heart healthy, so thank you to them too.

We’ll continue to post updates as the boys grow, though I’ll try to make them meaningful updates with lots of pictures, major milestones and lots of other events.

Miscellaneous

Sammy weighs 11 pounds 4 oz as of May 5th.  He’s 23 inches long.

Jacob is now 11 pounds, 10 ounces.  We didn’t get his length this time.

Some random pics from the past week:

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Sammy was all smiles when he found out he’s coming home.
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Sammy with his favorite toy in the hospital. He loves this!
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Daddy had to wear a tie to work last week, so Jacob put one on too.