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.

Samuel

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

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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.

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

 

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