Success for Sammy’s Surgery

Success for Sammy’s Surgery

On Thursday morning, Samuel had surgery to fix his Pyloric Stenosis.  The surgery took place at John Muir Medical Center in Walnut Creek.  Dr. Thomas Hui performed the surgery, while Dr. Katherina Lee was the anesthesiologist.

The surgery was slated to start at 10am, but they started prepping Samuel shortly after 8am when I arrived at the hospital.  Kristen arrived at the hospital at about 6:30am.  She just stayed up following Jacob’s 5am feeding.

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Kristen looks on after giving Samuel a kiss before he left for surgery on Thursday morning.

They gave Samuel some morphine and atropine to get things going.  Then Dr. Lee and Dr. Mikas, the staff neonatologist, took care of the intubation, or breathing tube.  We left the room so we didn’t have to watch it.  He was intubated and then started to wake up a bit.  They gave him a bit more medicine to calm him down and then he was asleep.  We gave him a kiss goodbye and they took him out.  We went into the break room to sit and wait.

Shortly before 10am, Dr. Sandhu came in and told us that everything was going well, but they found he had a bi-lateral hernia.  He wanted to know if we wanted that repaired while he was in the OR.  Certainly!  We gave authorization, and then spoke with the nurse, Dr. Lee and Dr. Hui to authorize it.  Dr. Hui told me the Pyloric Stenosis surgery was already done and it had gone well, so they’d fix the hernia now.  Dr. Lee said the anesthesia was going well and he’d be under a bit longer, but there weren’t any issues expected.

About a half hour later, Dr. Hui came into the break room and told us everything was done.  It would take a few minutes for him to come back to the NICU, but the surgery went well.  He shared some pictures of the Pyloric Stenosis before he fixed it, and then shared before and after photos of the pocket where the hernia would take place.  He sewed it up nice and tight.

Sammy stayed intubated until about 7:30pm or so.  We went in to visit him in the evening and just missed the tube coming out.  He was just relaxing a bit.  Dr. Oesterbroeck visited him just after 8pm, and was impressed with how well he was doing.

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Sammy rests comfortably following his extubation.

Then on Friday, Kristen held Samuel for a long time and he did awesome.  We checked in with the nurses on Friday evening and Colleen said he was really doing well.  She couldn’t believe he just had surgery on Thursday morning.

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Samuel on Friday.  He was doing awesome for one day after surgery.

We’re really encouraged that he’s on the right track – FINALLY – but there’s still a ways to go.

Here are some pictures for your viewing pleasure:

Of course I can’t post a blog update without at least one or two pictures of Jacob:

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More surgery for Sammy

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Sammy (top) does his best Charlie impression on Wednesday.

Hi everyone.  It’s been a while since I sat down to put together another blog. There’s been a lot going on the past two weeks since I last posted an update.  Let’s start with an update on Samuel.

First, Samuel will have surgery on Thursday at 10am PT.  He has Pyloric Stenosis, a condition where his stomach can’t empty into his small intestine.  Instead things accumulate and then, with nowhere else to go, he vomits it back up.  He’s been vomiting quite frequently the past several days, so on Tuesday they did an ultrasound and confirmed the diagnosis.

He has to be intubated for this surgery, so we’re nervous about everything involved.  But he has to have it done.  Dr. Hui will do the procedure at John Muir Medical Center.  I’m taking the day off to be there with Kristen before he goes in, and Kristen and I will wait and see him after he gets out.  We hope this will have really good results for him.

In other news, Samuel had his circumcision on March 11th – my birthday.  The procedure went well and Dr. Nash and the nurses said he took it pretty well.  They did it in his room so they didn’t have to move all the oxygen equipment down the hall.  We had to do this before he hit 10 pounds, or else Dr. Nash wouldn’t do it.

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Samuel’s oxygen needs were at an all-time low on Wednesday, though the flow was bumped up to 4.0 liters per minute.

Speaking of weights, Samuel is now up to more than 9 pounds, 5ounces.  That’s where he was on Sunday and I’m not sure where he is today.  (Before I forget, Jacob weighed in at 9 pounds, 9 ounces on Sunday on the hospital scale, but he was fully clothed so he’s likely a few ounces less.)

Samuel also had a reflux test done last week.  They inserted a tube up his throat and down to his stomach.  The intention was to leave it there for 24 hours and measure the reflux over a period of time, during and after his feedings, and to try and correlate some of his coughing fits and uncomfortable looks to reflux.

We got the test results for this on Monday of this week and they showed he has reflux, but a normal amount.  There’s not a big reflux problem like we thought.  We’re hoping that this is all just tied to the Pyloric Stenosis and it’s all said and done after Thursday.

There’s good news to report as well.  Samuel’s oxygen needs are going down.  He’s been moved from 2 liters to 3 liters back to 2 liters and now 1 liter, as of Monday.  He was bumped up to 4 liters on Tuesday when they took him off all feedings.  They’re also trying to make sure he keeps his lungs and belly clean, and the extra flow will help.  But he also was turned down to just 21 percent oxygen on Wednesday, an all-time low for him.  Once the surgery is done, the doctors don’t really think he needs any sort of substantive flow.  We’ll see.

At the end of the day, the doctors are now talking about ideas on how to get Samuel home. He’s likely to come home on some level of oxygen, which he may need for a year or more.  Only time will tell.  It’s not completely uncommon.

Now we focus on feedings and getting him stronger with the bottle.  If he’s slow taking the bottle, or it causes some complications with his paralyzed vocal cord, they may opt to put in a gastro port, or a g-port as it’s sometimes called.  This would be yet ANOTHER surgery.  We would choose to do this over keeping his nasal feeding tube in.  The gastro port goes into his belly and looks like a second belly button.  We would try and feed him with a bottle, but if there were challenges, or he didn’t take it, at least we can get the nutrition  in him.  Again, this is not completely uncommon, and many parents do this.

Moving on to Jacob, he’s doing well, though he’s turning into a fussy boy in the mid-afternoon and evening hours.  We’re fairly certain he has colic, which can only be cured with time. In most cases it goes away at the four-or-five month-mark.  We’re at 1.5 months now on an adjusted basis, so we may have some long afternoons and evenings.  Interestingly enough, Jacob seems to do less crying when he’s naked.  Maybe he’s hot!  So we’re stripping him down to his diaper a little bit to get him to quiet down.

That’s it for now.  Time for some rest!

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Jacob chills out in his diaper. He’s much calmer when he’s not wearing any clothes. Who knew!

 

Birthday with the boys

I got to celebrate my birthday last Friday and it’s quite likely the best birthday I’ve ever had.  I got to spend time with both my boys, and I got nice cards from them.  But it was hard as I was missing Charlie on this day.

Kristen dressed up Samuel on Thursday so she could have a picture waiting for me when I woke up on Friday.  She dressed Sammy in a confetti party hat with a Happy Birthday Daddy sign in front of him.  When I woke up on Friday I was greeted by Jacob wearing his Happy Birthday Daddy shirt.  Kristen put him in it during the 4am feeding.  Of course a few hours later he peed on it.  But we cleaned  it and got it ready for a picture with my cake, on Friday night.  Finally, I got cards from both of them that I’m going to frame and save forever.  Here are some pictures from my birthday.

I don’t want to dwell too much on Charlie, but I did spend a chunk of time thinking about him, missing him.  I can’t believe I didn’t even get to celebrate a single birthday with him. I’ve grieved quiet a bit the past three weeks, but I still think I’m in shock about everything.  It’s so hard to believe he’s gone forever.

Let’s keep this somewhat upbeat with an update on Samuel.  He had a good week overall.  He did really well on 2 liters per minute of flow, and most of the time his oxygen needs were in the middle 20% range.  The doctors were going to move him to 1 liter of flow this upcoming week, but he’s going to get his circumcision this week.  It didn’t happen on Friday as we thought it would.  Dr. Nash only does them up to 10 pounds, and Samuel will officially be 9 pounds on Monday.  He’s only 17 grams away on Sunday morning!  Once he has the circumcision and stabilizes, they’ll keep moving his oxygen levels down.

Kristen and I gave him a bath on Sunday and I got a chance to get a good shot of his scar from the PDA surgery.  It’s healing pretty nicely.  The photo below shows it in comparison to Kristen’s hand.  I think it’s about two inches long, in total.

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This week Sammy will also see a visit from a Gastro Intestinal doctor.  The neonatologist wants to do a test to see how bad his reflux is.  It seems to be bad, but they want to see how bad to prescribe the proper medication.

Finally he’s been taking about two feedings per day via bottle.  He can go anywhere from 6-10mL on a “bad” feeding, but on a good feeding he can do the whole thing.  Today I gave him 65mL in about 30 minutes and he drank it all.  He’s been doing mostly 30-60mL, and it’s promising that he’ll soon start taking a larger quantity and more frequently.

That’s it for now!  Have a happy week for you and yours.

3-Month Update

Wednesday, March 9th was the 90th day the boys have been with us.  They are three months old now, and it’s been quite a journey with great highs and the lowest of lows.  But for Jacob and Samuel, we’re so excited about where they’ve been and what’s ahead.

12795362_10207540734010755_3156682732143165582_nThere’s not a lot of news on Jacob this week.  He visited Dr. Nash again after he sounded a little stuffy with his breathing.  We’re very, very wary of RSV, which can literally kill them.  So we keep Jacob away from most other people, and we don’t leave the house much, other than to visit Samuel in the hospital.  Dr. Nash said there were no issues with him catching a cold or anything.  He just sounds a little stuffy.
Dr. Nash did mention that Jacob’s hernia may be operated on sooner than planned.  He thought we should wait until the one-year mark before it’s addressed, but Dr. Mikas told Dr. Nash it’s not uncommon now for boys to have the surgery to fix things sooner than a year.  So we’re checking into that.  It’s clear he has a hernia, as once in a while his left testicle is significantly swollen and large!  My son…  he has big balls!
Jacob was taking 100-120mL of formula reliably, but that’s scaled back a bit.  I think he was going through a little growth spurt and needed more calories, but now he’s in a plateau.  He still takes anywhere from 75-110mL (2.5 – 3.5 ounces) and he’s eating about 22 ounces per day in total.  He’s 8 pounds, 10 ounces as of Monday morning when he visited Dr. Nash.
IMG_8002Samuel continues to makes progress in the NICU.  He’s down to 2.0 liters per minute on his Vapotherm flow, and he’s at anywhere from 24% to 30% oxygen, with most days spent in the 25% – 27% range.  So those are good numbers.
He had his first vaccines on Tuesday.  They were delayed a bit because of his PDA surgery, but it was finally time to get him caught up.  It caused a fever and for him to have a few more desaturations, but those were expected side effects.  They treated him with Tylenol and he seems to be doing better.
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Samuel’s X-Ray shows a big improvement on the left, over what he had on Feb 25th (right). You can see his PDA clip, his feeding tubes and the wires for his heart monitors as well.

On Thursday he had an X-ray and it shows big differences since his last one on Feb 25th.  The entire chest cavity is a lot clearer than it was a few weeks ago.  His main organs are a lot more evident, and overall he’s a lot less “cloudy”.  That likely means he’s drying up and his lungs are better able to form when they’re at the right moisture level.  These are all solid advances forward.

Samuel’s taking a bottle now about twice per day.  We are starting slow so it can be a successful feeding for him, and he associates happy thoughts with the food.  Some of the feedings are going about 65mL, while other times he tries and gets 6 or 8mL.  He’ll stay in the hospital until he can feed reliably as needed.
On Friday, March 11th – my birthday – Samuel’s slated to get his circumcision!  This poor kid is going to get even more ice cream now.

Sammy gets focus on his vocal cords

Sammy gets focus on his vocal cords

This was a good week for Samuel.  We’ve seen him make a lot of progress this week and he had two tests that helped tell a story of what’s NOT going on.

First, Sammy’s breathing better and looking better.  He’s had a lot of awake time, where he’s interacting with his musical toys, listening to various people read him books, playing with one of the nurses and just snuggling with me and Kristen.  He also got to meet Stevie this week, and she held him for an hour or so.

His oxygen needs last week were 3 liters-per-minute of flow, with between 30 and 35% oxygen.  This week he’s still on 3 liters-per-minute, but his oxygen needs are down in the 23% – 26% range.  So that’s really encouraging.  He still has desats – including some big ones.  But we’re a bit more confident those are simply tied to his need for lung development.  That just takes time.

Paralyzed Vocal Cords

On Monday, he had a visit from an Ear, Nose and Throat doctor, who inspected Sammy’s throat to see what was going on, since his voice has been raspy and soft since his PDA surgery.

One of the risks of the PDA surgery is the opportunity for the surgeon to touch, stretch or cut a nerve that controls the vocal cords.  We were told of this, but it was downplayed a bit more than it should have been.  It turns out it’s pretty common – and it’s not like we  had much choice. It also turns out that it looks like Sammy’s vocal cord nerve was at least touched.

The ENT doctor validated that Samuel’s left vocal cord is paralyzed.  It’s odd for me to say it, but that may not be as bad as it sounds.  My fear was that the vocal cord was allowing saliva or other liquids to escape down his windpipe into his lungs.  You and I experience this when we get water down the wrong pipe and we choke on it.  Can you imagine if this was just how your life went?  That was my fear.

r7_opencloseDr. Sandhu quickly ordered a test called a Swallow Test.  We did that earlier today.  Kristen and I got to be in the room for it, though we were behind a leaded-glass wall.  The swallow test has a speech therapist feed Samuel a bottle that has formula mixed with Barium.  This is an element that X-rays can’t penetrate.  As he takes his feeding, a series of X-ray images are taken in rapid succession, effectively looking like a video.  It shows the barium in his mouth, how his epiglottis is working, and what the impact is on his vocal cords.  It also showed where the liquid was going further into his body.

The test only took about 10 minutes, and Samuel passed with flying colors.  The good news is that his vocal cord may be paralyzed in a spot where it’s not allowing liquids to go down his windpipe.  The suck, swallow, breathe reflex worked exactly as expected.  We watched his epiglottis close and direct everything down his throat into his stomach.  No issues!  The speech therapist was thrilled, Dr. Sandhu was thrilled, the radiologist said the test couldn’t have gone any better, and Kristen and I were very happy to see this result. This means that Samuel can start taking a bottle carefully now.

Dr. Mikas stopped me in the hallway after the test and we talked for a few minutes.  He said the doctors were thinking that Sammy’s vocal cord nerve was simply stretched, and it should heal in time.  It may not mean complete recovery from paralysis, but certainly enough that he can breathe and eat normally, and his voice is likely to return so he can have a strong cry.  We need them to have a big voice to put up with Jacob, who has a big voice of his own.

There’s some hope he’ll get better sooner, and home to us.  He still has a ways to go, but we’re feeling a bit more confident now that he may get to live his life outside of a hospital soon enough.

Jacob

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Stevie reads a book to Jacob, and he loves it!

I shouldn’t end this without talking about Jacob.  He’s had a good week. He continues to be a really good baby, overall.  He’s eating very well – we may need to go to bigger bottles in a few weeks since he reliably takes more than 100 mL now (3-4 ounces).  He loves spending time with Stevie, who is doing a great job taking care of him, feeding him, changing diapers, playing with Jacob and reading books.  She’s making our lives easier, for sure, but not to the point where we’re not doing our jobs as parents.

We notice that Jacob is starting to outgrow many of the things that just a month ago he barely fit into.  His Pack ‘N Play is most noticeable, and his Rock ‘N Play is getting tight too.  He’s busting out of his clothes, and we’re done buying newborn diapers.  When we run out we’re going to #1’s – though we may have to go there before we run out!