Sammy gets Speech Therapy

Sammy gets Speech Therapy

On Tuesday, Samuel went to visit his new speech therapist, Heather, and then he went to visit his physical therapist, Laurel.  This was his first visit to speech therapy.  It just took a really long time to get the appointments set.  But Kristen reported that Heather was great, and his first therapy is to start gnawing on dried fruit.  He’s not in any danger of biting the mango you see in the picture, but it gives him the exercise of biting down and manipulating the mango with his tongue, getting the tongue into different areas of his mouth.  We also need to work on his gag reflex, which is a bit too far forward in his mouth.  That’s somewhat expected since he doesn’t get a lot of food in his mouth.

Kristen said that Sammy had a great workout with Laurel too.  He sat and stared into her eyes for a while.  Sammy is hit and miss at PT, since he can get easily tired and very, very cranky.  But he had great energy today.  He’s had great energy yesterday too.

We’re moving him from five feedings to four feedings per day, and this is the last week of five feedings.  Starting next Monday he’ll be fed at 6:30am, 10:30am, 2:30pm and 6:30pm, and he’ll get 205mL per feeding.  That’s 820mL per day, or almost 28 ounces of formula.  He’ll also continue to get some baby food by mouth three times per day.

In Jacob news, we officially have a pretty good walker on our hands.  He’s able to move his way around the living room pretty easily. He loves playing chase around the couch now, and he loves to chase Sophie around the couch.  He’s still a little  unstable and we’re not quite ready to take him on a walk outside, but we should be able to do that very, very soon to see how he does.  He still prefers to crawl sometimes, especially if we’re showing off his talents to others.  That little stinker!

That’s it for now!


January Update

img_9323Hi Everyone… another exciting update from the Mazza household, where Samuel and Jacob are growing like two weeds!

We just passed the one-year mark of when we brought Jacob home.  It was fun to revisit that post I did a year ago to see how small he was, and to compare to how big he is now.  We’ve officially declared him a “walker” now, since he can take 2-3 steps reliably, and we’ve seen him go as far as 6 steps before losing his balance.  I think it’s less of a balance issue and more of a confidence issue.  He’ll get there.

Jacob is about a week away from being off all formula.  We’re weaning him off the formula and moving him to whole milk.  Now he gets four bottles per day, with 6oz. of milk and 2oz. of formula.  By next week we should be at 100% milk.  It will be nice to swap this out for milk, since formula is more expensive.

Jacob paid a visit to Target with mom, and made himself comfortable in the cart.

He eats pretty much what we eat now.  He especially loves bananas and peas.  He does get baby food (stage 4), but we’re trying to change our eating habits to have things that he can eat with us.

Jacob is still taking two naps per day, and he’s doing pretty good with them now.  Lately both he and Sammy have been sleeping a bit later – until 6:30am or even 7am.  We’re thrilled to have the extra sleep ourselves!

Samuel is doing well too.  He’s getting a lot of attention from his physical therapists, occupational therapists and other specialty doctors.  We’re looking forward to working closer with his speech therapist on his feeding.

He got clearance today to go from 5 feedings to 4 feedings per day, using his feeding pump into his G-Tube, of course.  He will get the same amount, but we’ll just give it as a larger feeding.  And we should be able to speed things up a bit over time so the feedings will go faster.  The goal is not to spend 5 hours per day getting food pumped in, so he can do more playing, therapy, learning, etc.

Sammy also gets some baby food on a regular basis now.  He likes it a lot, though the first bite is always a bit of an adventure.  And now the OT folks want us to work with him on starting to take some liquids through a cup.  We’re going to bypass the bottle completely, I think, since he’s forgotten what to do and isn’t reacting well to it.

Sammy smiles while wearing his “Mom” sweater.  He’s practicing for Valentine’s Day.

His strength is really improving.  His physical therapist, Laurel, is always impressed when he comes to see her.  She told me earlier this week that his abs are a bit weak, but the rest of him is getting really strong.  It’s OK that his abs are weak, considering he has a G-Tube right through the middle of them.

We can put Samuel down on the floor on his back now and he’s very likely to roll over.  He’s kind of funny since he grunts and groans the whole way.  Now we need to work on turning those grunts and groans into babbling.

In other news, we learned today that Stevie, our nanny, will no longer be with us.  We wish her well and now we start our search for somebody else to help.  It really is great when we can get reliable help who can handle the boys.  Last Friday Kristen and I went on a lunch date, and then went bowling in Danville.  I learned that I’m not a very good bowler, and Kristen isn’t much better than me.  But she beat me in both games and I did not let her win!

Many of you know I left my company back in November.  I have nothing to share on the job front, other than I’m interviewing at a few locations.  But its’ been really great to spend more time with the boys.  Still, I’m ready to get back to a day job, and hope to land something great soon.

The Eyes Have It!

The Eyes Have It!
Sammy says “Happy New Year”.  This may be his best smile ever.

Happy New Year everyone.  Time for another installment of what’s going on in the Mazza household.  We’re just shy of 13 months old now – almost 11 months gestationally – and the boys are doing well overall.

Today they had an eye appointment with a pediatric ophthalmologist.  Samuel previously saw an eye doctor, who promptly declared him cortically blind.  This was back in October, and understandably Kristen came home in tears.  It made me mad because I knew he wasn’t blind, and shame on a doctor for declaring that.  We’ve since fired Dr. Chou, and won’t be going back to her.  (She also did a test called a refraction, which wasn’t necessary.  Most medical plans won’t cover that, but I learned today my vision plan may cover it.)

And then for Jacob, when he saw Dr. Nash in December for his one-year check-up, they ran a test via some iPhone app and said he may have some eye issues, and he referred us to get Jacob checked out.

So today, we took both boys to see Dr. Victoria Hsu from the UCSF Benioff Children’s hospital today.  Luckily they have a San Ramon office, which is super convenient for us.  Both boys had an examination and then had some drops in their eyes to widen the pupil.  Both boys are far-sighted, but neither boy is a concern at all.  As their brain matures, they should grow out of most of it.  Regular eye tests will tell us for sure.

Samuel does have his right pupil 20% larger than his left pupil, and the doctor says his right eye isn’t maturing as it should.  So Samuel gets to be a pirate now, wearing an eye patch over his left eye for two hours per day for the next few months.  The goal is to eliminate the left eye, forcing the right eye to work harder and mature.

Sammy sports his eye patch.

As a more general update, the boys are doing well.  Samuel’s absolutely doing great with his physical therapy.  The therapists are ecstatic about his progress.  His tummy time is going well and he’s able to roll over on his own now.  He still has to learn to get his arm out of the way, but he’s able to do it.  And when he’s on his tummy, he’s doing a great job of lifting his head off the ground.  That means his neck muscles are really getting stronger.  We’re so proud of his work ethic!

He’s interacting with his toys pretty well, and he’s generally having a good time most of the time.  He still has a long way to go, but Samuel’s well on his way to “catching up”.

Jacob is almost to the point where he can walk on his own. He likes to walk around the living room, holding on to everything, and in the past few days he’s been taking a step here or a couple steps there on his own, from the ottoman to the sofa, for example.  He’s going to start the transition from formula to milk over the next several weeks, and then by sometime in February we’re pretty sure he’ll be off formula.  He’s learning how to use his sippy cup, and he eats nearly everything we put in front of him.  Last night he had peas – one of his favorite foods – a slice of turkey and some baby food.

Stevie has been out the past three weeks, but we’ve been lucky and fortunate enough to have a great fill-in: Bianca, who’s a college student from San Ramon.  She goes to school out of town and needed a job for the exact dates that Stevie was gone.  She’s done a fabulous job, and we hope to keep in contact with her.

Jacob in his bear outfit, following a ride in the wagon with Bianca

That’s about it for now.  Happy January!

Mazza Triplets: 1 Year!

Hi everyone… today is December 9th and we’ll celebrate Jacob and Samuel’s birthday today.  They are one year old today.  Tomorrow we’ll have a party with a few friends and family members.  It’s nothing big, and please don’t feel offended if you didn’t get an invite to come hang with us.

Grandpa Bob, Grandma Selena, Grandpa Rick, Grandma Karen, Grandpa Dave and Grandma Melinda are all coming into town from Jerome, ID, Visalia, CA and Davie, FL, respectively.  Grandma Barbara (Deebee as she likes to be called) and Grandpa Steve are not able to make the party from Costa Rica.  Aunt Jamie will also be here, along with just a few close friends and some of the nurses who helped us while in the NICU.

I thought I’d put together a short review, reflecting on the ups and downs we had.  And boy did we have some ups and downs!  The theme of the boys’ birthday party is Where the Wild Things Are, and it’s a very fitting theme for our boys.


Let me start by immediately remembering our beloved Charlie.  Losing Charlie is by far the hardest thing Kristen and I will ever go through.  It has been immensely hard to carry on this year.  If you’re not up to speed on the story, I’ll save you the details but we lost Charlie on the morning of Friday, February 19, 2016.  He had been home just five days at that point.

Kristen and I have been preparing some things for the party and it’s been hard looking at the pictures, wondering what kind of antics he and his brothers would be getting into.  I keep wondering what he would have looked like at this point.  More hair than Jacob or less (definitely more than Sammy)?  Taller or shorter than the other two?  Heavier or lighter?  Would he be walking by now, or crawling?  Would he be a good sleeper?  Would he say “mama” and “daddy” yet?

We’ll never know the answers to any of these questions.  There are times when I think life is incredibly unfair in taking my boy so early on in his life.  I played golf a few weeks ago and while waiting to tee off, I could see for miles and miles around me on a very clear day.  And it’s times like those where I get a few tears thinking about him.  Other times I need to leave the room to have a very hard cry.  I’m definitely a much more emotional person now.

Kristen took some grief “classes” this year at a local church, with others who have lost relatives.  Most weren’t babies.  We also have met some people from John Muir Medical Center in Walnut Creek who’ve also lost their babies at various stages.  One of the biggest lessons learned is the grief will never go away, but it will become easier over time to think about Charlie and not become a puddle of tears.  For now we’ll just try and cope the best we can, leaning on friends and family to get us through the years.

We’re grateful we have Samuel and Jacob around, as coping would be a lot harder.  But they keep us so busy, and smiling so often with their physical and mental growth so we don’t have to be sad.


mazza1year-07Samuel is just over 18 pounds now, and he’s in the 50th percentile for a boy adjusted to 10 months old.  He’s come so far this year and he’s had more medical procedures and visits in his short life – many more than I’ve had in my entire life. He’s my hero in so many ways.   He’s so much braver than I am, too.

A quick recap of Samuels’ adventure includes lots of time on his tummy at the NICU in Walnut Creek.  His Ductus Arteriosus (PDA) got wider in early February and he had to be transferred to UCSF Benioff Children’s Hospital Oakland to have surgery to close it.  The surgery either cut or nicked his left vocal cord nerve, and he’s had a paralyzed vocal cord ever since.  He was transferred back to John Muir Medical Center on the day Charlie died.

In late March Samuel developed a condition called Pyloric Stenosis, where the connection between his stomach and intestines got too thick, preventing liquid from adequately clearing his stomach.  Instead he vomited everything back up.  So he had another surgery to fix that.  While under that surgery, the doctors found he had a bilateral hernia, so they fixed that while he was under anesthesia.

He was recovering from that second surgery when he got very sick and had trouble breathing. The doctors at John Muir couldn’t tell what was going on and why he was going backwards, so he was transferred to Lucile Packard Children’s Hospital at Stanford University in Palo Alto, where they have full-time respiratory doctors.  Immediately he was determined to have Rhinovirus, and when he arrived at LPCH he was intubated and quarantined for almost two weeks.

All this time he continued to receive his feedings via feeding tube.  He can’t take a bottle because of this paralyzed vocal cord – he would aspirate liquid into his lungs.  When he was sufficiently healed from the Rhinovirus, he underwent another swallow study which determined he was aspirating into his lungs.  That’s when they decided to have a Gastric Port inserted into his belly, and he had a Nissen Fundoplication completed at the same time.  The Nissen effectively wraps the stomach around the esophagus, preventing reflux.

Finally, on May 5, 2016, Samuel was released from the hospital for the first time and we brought him home.

Today he sees a batter of doctors including speech therapists, occupational therapists, physical therapists, pulmonary doctors, gastrointestinal doctors, ophthalmologists, and even genetics doctors.  He’s hypotonic, which means he has low muscle tone.  He’s not able to rollover, sit up, crawl, stand or anything else that a normal 10-month-old baby (adjusted) would do.  He’s made great progress in the past few months, but he has a long road ahead.  We hope the next year will allow him to start to catch up to his brother, who’s ready to play quite hard.

Sammy is a great napper.  He likes to sleep through most of his feedings, which are done via a machine that pumps in 160mL of food five times per day.  He’s not a bad sleeper at night, but he’s not great.  He sometimes cries quite hard, but he calms himself down after a couple minutes.

He’s started taking Stage 2 food – about a tablespoon at a time.  He recently passed his swallow study at John Muir, and he’s cleared to take more food and learn how to take a bottle again.  But so far the bottle is slow.  He’s just not sure what to do with it.  We don’t reasonably think he’ll be off his G-Tube anytime soon, though we wish he could yank it out forever right now and take a bottle and other food by mouth.

On the whole, Samuel is a true delight to be in our lives.


mazza1year-31Jacob is also a delight, but in so many different ways.  Samuel’s personality is low-key, but Jacob is boisterous and crazy, and we’re having so much fun watching him grow and develop into a little boy.

Jacob was the first to come home from the hospital in January.  He came home about 4 weeks premature, at 36 weeks of gestation.  He was off oxygen very early and was the first to take a bottle.

Kristen and I can remember the night we brought him home.  We looked at each other and thought, “Stuff just got real.”  Finley and Sophie also welcomed him home by freaking out for about three days.  We barely slept the first night because (a) we were so worried about him just surviving the night and (b) Finley and Sophie whined the entire night.  But he did great, and the dogs quickly accepted him.

He was so tiny when he came home – Just over four pounds.  Today he’s about 18 pounds or so.  He has long dirty-blond hair, and he has blue eyes that everyone talks about.  He smiles at almost everybody, and most women he comes in contact with just melt.  He’s going to be a ladies’ man for sure!  He was the first to get two teeth on the bottom, and the two top front teeth are on their way in now.

For the first nine months that Jacob was home, we largely ignored all the advice that was given of getting him on a schedule.  We were on his schedule, and that largely translated into him sleeping on Kristen in the evening, and on Stevie during the day.  Finally, in late September I talked Kristen into trying a sleep method to get him to sleep on his own in his crib, without all the cuddling.  Now he’s getting 11 hours of sleep per night, though he can still be a lousy napper.  And if he doesn’t get a good nap, you can really witness a cranky boy late in the afternoon.

Jacob’s crawling skills are outstanding.  He motors around the living room all day long.  He’s quick to visit you in the kitchen, or just venture in there on his own if he feels like it.  His latest antic is crawling as fast as he can over to the dog’s water dish.  He had both hands in the dish not too long ago before I could get him out.

He also likes to stand.  He’s able to hold on to the furniture or the Super Yard gates we have around the living room, and he can get himself around quite handily.  He’s still a bit wobbly, but he’s really doing well developing his balance.  I can’t wait for him to take his first steps, but at the same time I know it’s going to be even harder chasing him around the house on his feet.

He’s also a squirmy little boy.  Changing his diaper and clothes is an outright adventure now.  The changing table really won’t hold him anymore, as he squirms and turns over.  He’s just too interested in things around the changing table.  Even when you give him a toy, or his pants, to distract him, he still manages to make it difficult to get dressed.

Jacob is a champion eater.  He gets about four bottles per day – each being between seven and nine ounces.  And he gets Stage 3 baby food at 8am, 12pm and 5pm.  He also has been eating whatever mom and dad have been eating, so he’s had some meatloaf, white beans, pasta noodles, eggs and other foods.  So far he’s eaten just about everything we’ve given him, though he does have to play with it first.  He also likes his Yogi’s (small yogurt chips), which are good for finger food and building dexterity.

Jacob has a tremendous laugh, can be very ticklish and can be very affectionate.  He also somehow knows all the things he shouldn’t touch, and of course he wants to tough them or put them in his mouth.  Things like the remote control, my iPhone, my flip flops, Sammy’s feeding tubes, Sammy’s oxygen tubing, etc.  For some reason he’s also attracted to the oven, the trash compactor, the recycling bin and a small paint dot on the baseboard near the stove!  Random stuff!

Jacob’s doing a lot of babbling lately, and he’s oh-so-close to getting his first words out.  I’m not sure he knows his name yet, but if you call his name, most time he’ll stop and turnaround to see what’s going on.

Kristen misses her marathon snuggles with Jacob to get him to sleep, and she gets so excited about putting him to bed, when she can have time to read him The Goodnight Train each night and spend a few minutes as he zonks out for the night.  I love doing that too, buy seeing Kristen’s excitement makes me let her do it each night.  I handle getting Samuel to bed.


I can’t write a year in review without mentioning and giving credit to our nanny, Stevie.  We found her on the week before Charlie died, and I thought she may not come back.  It’s a horrible event to be in the home and witness the death of a child.  But we can’t say enough about the work she’s done this year, and we’re very glad she’s working with us.  We trust her with the boys, enough so that we don’t mind taking a date night (or day) once in a while and letting her run things on her own.  She reads to the boys, plays with them, does the physical therapy routines with Sammy, gets them their formula or other food, takes Jacob on wagon rides and just generally helps out.  We really are fortunate to have Stevie in our lives, and she’s always going to be a big sister of sorts to these boys.

Finally, this has been a year of professional change too.  In November, I parted ways with my company, AECOM and I’m looking for my next adventure.  Losing a child and going through the year that we’ve gone through makes you reconsider exactly what you’re doing in life, how happy you are, how meaningful your work is, etc.  I don’t know what’s next for me professionally, but I’m confident I’m going into choosing my next job differently than I’ve ever chosen a job.  It’s going to be meaningful to choose a company where I can be home to see the boys grow up, where I can coach little league or their soccer team, help them with their homework, etc.  The work-life balance is more important than ever, and I can’t forget that I want to be a good husband to Kristen too.

Thanks for all the words of wisdom, support, help and other that many of you have given us the past year.  We’re eternally thankful for your caring.  We look forward to you being a part of the boys’ lives as they grow up.

One year down!



Samuel’s Swallow Study

Samuel snoozes as we enter John Muir Medical Center in Walnut Creek.

Hi everyone.  We are preparing for the boys’ first birthday, which is just 10 days away now!  Holy cow does time fly.  I’ll have another posting on their birthday, reflecting back on our first year, but I thought I’d post a short update for now on Samuel’s latest swallow study.

In case you’re out of the loop, let me quickly catch you up.  Samuel had a PDA ligation procedure in February to close a valve that was shunting blood away from his lungs.  The valve is part of his heart, called a Patent Ductus.  The PDA is Patent Ductus Arteriosus.

That surgery is done via an incision near the left shoulder blade, on Samuel’s back.  It just so happens that your vocal chord nerves run through this area of the back.  And while the surgeon who did the surgery is world-class, it’s often an outcome that the procedure will result in temporary or permanent paralysis of the left vocal chord.  And so far that’s the case with Samuel – his left vocal chord is paralyzed.

A recent scope down his throat hasn’t shown any improvement yet, but  we’re hopeful it will gain some functionality with time.

Anyway, this means that his vocal chords aren’t able to function properly, which means it could impact his ability to speak, and swallow.  If the chord doesn’t move, it won’t close properly, forcing food down your esophagus.  Instead it may allow some food or liquid down your windpipe, which will aspirate into your lungs.  This was a problem early on for Samuel that led to us making the decision to have the G-Port put into his tummy for feedings.

Let’s now fast-forward to November 29th – yesterday.  We took Samuel in for a follow up swallow study, which is where Samuel is given different mixtures of formula and baby food that has Barium mixed in.  These are fed to him while high-frequency X-rays are taken to watch how his mouth, tongue, throat, vocal chords, windpipe and esophagus all work together.  The X-rays are about 30-frames per second, which is the same quality of TV that you watch at home.

Samuel was all smiles in his Turboform chair, though he lost his cool a few minutes later. He didn’t like having to wait for the doctor, I guess.

Samuel was all smiles when we arrived into the X-ray room and got him situated, but it took a little time before the doctor arrived and that was enough time for Samuel to lose his cool.  It took about 15 minutes to get him calmed down and to do the test, and then Kristen fed him formula, a thicker “nectar”, which was formula that was just thickened, an even thicker nectar and finally some Stage 2 baby food, which is what we’ve been feeding him for quite some time now.

The good news is that Samuel passed the tests with flying colors.  The doctor and the speech therapist both said they saw lots of good things on the x-rays, and nothing negative.  They liked how he held the food in his mouth and controlled the swallow in little bits, even with the thin liquids.  They didn’t see any aspiration into the windpipe or lungs at all and they’re impressed with his progress.  Of course they’ll go back and review the high-resolution footage at a slower pace to be certain that there was nothing negative going on.  But Samuel gave us good cues too, since he didn’t cough at all during the feeding.  It was all nice and smooth.

The result of all of this is we can now start ramping up his feedings with both a bottle and increased amounts of Stage 2 food.  We’re going to go slow, starting with more Stage 2 food, which he’s used to already (and loves!).  But we’re going to introduce a bottle into the mix now with about 20mL of formula.  Of course he’s forgotten how to take a bottle, so we’ll need to work with him to re-learn that skill.  He loves his pacifier, but this is shaped a bit different.

When we give him his food on a spoon, we also need to change the way we give it to him, allowing him to take it off the spoon instead of what we do now, which is kind of scrape it into his mouth via his teeth, gums or lips.  Essentially we need to teach him how to eat.

This is all very encouraging and is likely the first step towards having his G-Port removed and having him eat like a normal kid.  It’s likely to be 6-9 months at best before we can even talk about removing the G-Port, so we have a long road ahead.  But if he advances quickly and is able to take all his feedings by mouth, obviously there’s no reason to keep that “button” on his belly.  I know he wants it gone, and I desperately want it gone.  We both hate it!

After the swallow study was over, we asked if we could stop into the NICU to say hello and the Speech Therapist walked us up.  Of course they were excited to see us, though we didn’t get to see all the nurses and doctors who took care of the boys during their time there.  But it was nice to see familiar faces we haven’t seen since April, in some cases, and I’m still stunned at how many people truly had an affinity for Samuel, Jacob and Charlie.  Everyone told us we’re one of the unique families to come through the NICU, and you have to believe it based upon the turnout and genuine interest for the boys.  It was nice seeing everyone and we look forward to seeing more nurses and doctors soon.

We got to see some of our favorite doctors and nurses. Two callouts: Dr. Sandhu (left) was the lead doctor in the NICU the morning the boys were born last year, and Valerie (next to stroller) cared for Samuel, Jacob and Charlie the most during their time at the NICU. The rest of the nurses all had the boys too for some frequency.



Sammy Oxygen Update

Sammy was all smiles as he heads to his pulmonologist appointment on Monday.

Hey everyone.  On Monday, Samuel went to see his pulmonologist, Dr. Newasker.  She’s the person who’s be working with him on how to wean him off his oxygen.  One of the critical factors in coming off oxygen completely has been to  pass a sleep study, which took place about three weeks ago.

At any rate, Dr. N. spoke with Kristen about the results, and the bottom line is he needs to stay on oxygen at night for a bit longer.  And by a bit longer, I mean until March, 2017.  During the sleep study, he had a few results that were problematic, and it looks like he had some sleep apnea.  So we’ll continue to put him on oxygen at night and during longer car trips.  He has no issues being off oxygen during the day or for short (less than 2 hours) car trips.

This is disappointing to me, but we’ll do what’s best for Sammy.  I really love seeing him without his face stickers and oxygen tubing, and I know he likes getting this stuff off his face too.

He was supposed to have his swallow study again on Tuesday morning, but he’s been under the weather – so has Jacob – and we delayed it.  I think Kristen said it’s now scheduled for sometime in late November.  The swallow study will help tell how his vocal chords are working, and if he’s able to start taking a bottle.  Previously he was aspirating a tiny bit into his lungs, but a tiny bit is too much.  He gets some Stage 2 food now and he seems to love it (most flavors anyway).  He also handles it without any aspiration, so hopefully he’ll be cleared to take on more.  Feeding him through his G-Port is painful, as the area is often red and irritated.  I really can’t wait to get him off that feeding tube.

Sammy’s also seeing his physical therapist weekly now, and Laurel is really impressed with his progress each week.  He’s working on tummy time and strengthening his upper body muscles, his core, etc.  He’s now able to bring his hands to his face, and if you put a toy in front of him, such as on a mobile, he’ll reach out and touch it most of the time.  He still has a long way to go before he’ll sit up on his own, or even hold his head steady on his own.  But the progress is definitely noticeable.  We have to give credit to Stevie for this too.  She’s really been working with him each day and the progress shows.

Anyway, that’s it for now.


September Update

img_8667Hi everyone.  It’s been a while since my last blog update, so I thought I’d take a few minutes to put one together.  Right now the boys are sleeping, and so is Kristen.  So the house is nice and quiet.  I should be doing other things, like cleaning the mounds of paper in my office.  But this will suffice.

My last update was on their 8-month birthday.  We’re now at the 9.5-month mark and the boys are doing well.  Here are the highlights for each.


img_8635In Sammy’s August trip to his GI doctor, she saw that his breathing is coming along nicely.  We had started taking him off oxygen for 30-45 minutes at a time – mostly at bed time.  Dr. Newaskar saw him and he wasn’t on any oxygen at all for that visit.  So she said we can start taking him off regularly, starting with 30 minutes and going up 30 minutes every other day.  We’re now having him off oxygen more than 10 hours per day.  In fact we get up and take his face stickers off, since we won’t need them until the evening.

We also leave his pulse ox monitor turned off when he’s on oxygen, only turning it on when he’s off oxygen to watch him.  But truthfully the only time it really goes off is when the connection is bad.  Even this weekend, we’ve left him off of that most of the time too and he’s doing just fine.

Sammy continues to go to physical therapy to get stronger.  I’m not sure if I’ve covered it before, but he’s Hypotonic, meaning he has incredibly low muscle tone.  So he continues to spend most of his days on his back.  The PT is focused at helping him build muscles in his legs, his core, his arms, etc.  So we do exercises with him on various equipment, or even just using our legs.  I like to sit with Sammy, supporting his head, while he sits up.  He really seems to enjoy that too.

It is clear the work we’re putting in is making him stronger, but he has a ways to go to before he’ll roll over or sit up on his own.

This morning, September 25th, we noticed that Samuel’s first teeth broke through.  I knew they were coming any day, since you could see his gums looking like they had teeth under them.  The first tooth through is the lower-left-front tooth.  It’s hard to see, but easy to feel.  It’s also possible the lower-right-front tooth is through his gums too, but I can’t be certain yet.

Sammy is going for a sleep study this week in Mountain View.  On Tuesday night, I have to drive him over to this hospital and stay with him for the night while they monitor how he sleeps and his oxygen needs.  A successful sleep study is required before he can be permanently taken off oxygen.


Jacob has two teeth coming in.

Jacob is progressing really well.  He’s a master of sitting up on his own, he has the crawling thing down now, and he loves to climb up to a standing position, often standing with only one arm holding him up.  Of course he’s still wobbly and unable to support himself yet, but I’m guessing we’ll have a walker by the time he’s one.

Jacob’s first teeth came through last week.  He had one, and then the second one came a couple days later.  They’re a bit easier to see, though he still has so much saliva in his mouth at all times that it’s still hard to see.

Jacob’s big accomplishment has been re-learning how to sleep.  Or maybe Kristen and I’ve been the ones learning.  I’m not certain.  We decided to do something called the Sleep Wave.  The basic premise is to start a strict calming routine right before bed, and then once he’s in bed, crying, we start our “wave” of visits to calm him down.  Previously he would only fall asleep on somebody, and if you put him down and he quickly woke up, he needed somebody to fall asleep again.  Kristen and I – mostly Kristen – were up frequently with him in the middle of the night.

Now when we put him down, he does cry, but we leave him with, “Nighty night, sleepy tight, we love you Jacob.” And then walk out.  We let him cry for five minutes and then do it again.  But we don’t linger or dilly-dally.  We’re in the room and out in 7-8 seconds, just repeating our statement.

The first few nights it didn’t seem to work well.  But the last few nights it’s worked great.  Saturday night, for instance, he was put down about 6:45pm, after getting a bath, a bottle and a couple of stories.  The Goodnight Train is the last book we read to him.  Then Kristen put him down and he was out.  He woke up at 5:50am this morning.  A darn good night!

Naps are a bit harder, and he’s still having trouble.  The doctors who wrote the book we’re following say the Sleep Wave for naps may take 3 weeks to master.  We also think their room is too light, so we need some blackout shades.

On the whole, he’s a much happier baby, and we’re happier parents, because everyone’s now able to sleep.

This and That

img_8655We recently met with our friends Paul and Rachel Kahalewai.  They have triplet boys too that are just a bit older than Sammy and Jacob.  We met them in Sonoma in late August.  It was interesting seeing all the looks of people staring at us.  We still struggle with all the people who look at Sammy and Jacob and say, “Twins?!”  They all look confused when I say, “No, Triplets.”  I’ve been explaining very quickly that Charlie died in February, but I’m going to start changing my answer to just, “No.”

We took the boys down to Carlsbad, CA for a week of vacation.  My in-laws, Rick and Karen, joined us, and so did Kristen’s sister, Jamie, and Kristen’s brother, Brian, along with his girlfriend Chelsea and her son Oliver.  It was nice to see everyone, and we did some fun things like going to the San Diego Zoo and to the beach.  Kristen was able to break away and do some paddle boarding with her siblings while I watched the boys with the grandparents.

Samuel barely made a peep the entire ride in the car.  Jacob was vocal, as he usually is, and cried the last 50 miles on both days of the drive down there.  On the drive back, Kristen and I decided to brave it.  We left early and drove the entire ~500 miles in one day.  All things considered, Jacob was really reasonable for that trip too.  I do think we came to the realization it’s a lot of work taking them out like that, so we’re going to wait for them to get a little older before we attempt that again.

img_8699On the drive down there, we got to stop and see Kristen’s grandma – the boys’ great grandma.  She’s 96-years young and there’s no doubt we made her day with an hour-long visit.  She got to hold both boys for a bit, and it was nice to see her doing well.

We attended the NICU reunion party for John Muir Hospital.  They have that every year so all the NICU babies can come back to see the doctors and nurses.  We saw many of the doctors and nurses who helped us and it was good to catch up with them since we last saw them in April.  Some of them now are friends on Facebook, so they get to see our pictures of the boys regularly.

img_8677Kristen and I got a date night together to go see the Counting Crows in Mountain View, CA at the Amphitheatre.  I got Kristen tickets for a “Meet & Greet” which allowed us to see their warm up in the mid-afternoon, and then we got to take a picture with them.  The Meet & Greet portion was neat, but pretty disappointing considering the price paid versus what we got.  They should call it a “Listen and Take Picture” session instead.  The band members just weren’t into it.  Luckily they put on a good show later.

Finally, we have just a single outstanding hospital bill at this point, but it’s problematic.  The insurance company has rejected the cost of the helicopter that took Samuel from Walnut Creek to Lucille Packard Children’s Hospital when he was having breathing problems.  The outstanding bill for that flight is more than $31,000.  The insurance company already paid about $4,000, but are saying we didn’t ask for permission to fly him, and it wasn’t required.  I just love when insurance company doctors who’ve never met my son and who’ve never spoken to the neonatologists and nurses start making judgments on what’s medically necessary or not.  I only add this in here because (a) it’s amazing to me and (b) we’re almost done.

Well, I guess that’s it for now.  I’ll do another blog soon, when time presents itself.  The boys are up now, so time to get back to entertaining!

Here are some of the recent photos we like.

Jacob and Samuel play one morning. Play usually means Jacob going after Samuel’s tubes, wires and toys.
Another morning hanging out. No oxygen, wires or tubes for Sammy!
Grandma B gets some great Sammy cuddles in Visalia.
Grandma B gets a good look from Jacob.