The Mazza boys hope you have a great St. Patrick’s Day!
Sammy and Kristen are in Walnut Creek tonight at one of John Muir’s facilities doing another sleep study. This is where they’ll put lots of wires and sensors on him to checkout how he sleeps, how his breathing works, etc. The photo shown above is only about half-way through all the probes and sensors he has to wear.
The best case scenario is that the doctors find that Samuel doesn’t need any oxygen anymore and he sleeps perfect. We expect they’re going to say he doesn’t need the oxygen, but likely will have some sort of sleep apnea. I think he’ll have to do another sleep study soon to be fitted for a CPAP machine.
He did one of these sleep studies a few months ago. I went to that one with him down at one of Stanford’s facilities in Mountain View, and it didn’t seem like he slept all that well. They showed he didn’t really need any more oxygen at night, but he did have lots of pauses in breathing during the night. This is known as Apnea. So we’ve kept him on oxygen at night. this is why he has those rosy-red cheeks. We take the stickers off each morning that keeps his oxygen connected to his face at night.
We expect to get these results in about two weeks. We go to see Dr. Newaskar, his pulmonary doc, again on March 23rd, so hopefully the results will be back by then.
If I get another picture from Kristen I’ll post it. Kristen reports he’s really happy right now and very talkative to the nurse hooking him up. Good boy!
If you’ve been following our journey through insurance claims associated with the boys, most of them have been handled quite fairly. But there was one (and now a second one that I’ll cover separately) that was handled quite unfairly. This was for Samuel’s helicopter transfer from John Muir Walnut Creek to Lucile Packard Children’s Hospital in April, 2017.
Today I received a phone call that said there was “new information” related to the appeal, and it’s been re-evaluated and approved. This was for more than $34,000!
(Insert magic harp music with water-drop dissolve to go back in time)
Samuel was transferred from John Muir to Lucile Packard on April 5, 2016 after his respiratory activity was rapidly deteriorating. The doctors at John Muir couldn’t figure out what was going on, and the respiratory specialists that were needed just weren’t on-staff. The closest hospital that had these people was in Palo Alto – a 50-mile drive from our house. So after conferring with doctors and nurses at John Muir, who conferred with their colleagues at Lucile Packard, the decision was made to transfer Samuel quickly.
The doctors at Lucile Packard thought the situation was dire enough that they sent their air ambulance to get him, and he made the ~20-minute flight across the Bay. He was immediately intubated upon arrival, sedated and quarantined. It was later determined he was very sick.
When the medical claim was filed, Anthem, on behalf of my prior company, determined that the transfer was for a genetics evaluation and not anything urgent, and therefore they denied the claim. We went through three levels of appeal, providing more than 30-pages of medical information, notes from NICU Medical Directors at both hospitals, and other materials, only to have all the appeals rejected. All found the same thing: his transfer was for a genetics evaluation.
Doctors at John Muir said in their statement that they never would have asked to transfer Samuel for a genetics evaluation, and the doctors at Lucile Packard also stated they never would have approved the transfer. Doctors just don’t transfer patients for genetics evaluations. Yes, he needed a genetics evaluation, but it was never a factor in his transfer, and was the furthest thing from our mind.
After all the appeals, it went to an “independent third party reviewer” – selected by Anthem, of course. Surprise, they found in favor of Anthem for the exact same reason!
A few weeks ago I sent a note to the benefits leader at my former company, asking him to personally review the case and the notes. My claim is that Anthem and the third party failed to consider all the facts, and never did proper due diligence. They never called the doctors involved, despite my insistence they do so, and never took steps to clarify things.
I got a note back saying that Anthem’s work was done properly and they weren’t further reviewing this. I made one more reply to them asking them to take action, or my next stop was the CEO. I have a draft note already completed. I’ve also been working behind the scenes with a TV station in the Bay Area about this, and they’ve been drilling Anthem on this as well.
(Insert magic harp music with water-drop dissolve to come back to present day)
This morning, Anthem called and said they received new information, and now the claim was re-evaluated and the rejection was overturned. I’m to get a new Explanation of Benefits (EOB) and we should see this be paid in full by Anthem.
I’ve asked what the new information was, but they’re going to need to research this and get back to me. Perhaps I should let this go, but I’m really curious what made the difference. I don’t think there was any new information. I think they finally looked at everything that was submitted after the benefits department at AECOM forced them to. I hope this is what happened, and I can say “thank you” to them.
I won’t count my chickens on this until I receive paperwork showing it’s paid and behind us. And then we can focus on the last appeal – for another ambulance ride for Sammy to return to Walnut Creek from Oakland following his surgery last February on the day Charlie died. The insurance company paid 50% of the $18,036 bill. So now we’ll work to get the final part of this paid and behind us.
In closing, if you have an insurance claim that’s legit, don’t let the insurance companies get away with screwing you over. I knew our claim was legitimate, and persistence in trying to do the right thing seems to have paid off.
Hi everyone. Today’s post is going to be a bit of a long one. I want to explain something in detail to our friends and family, but also want to make sure I document it well for my own reference in the future. I also hope this contributes to the medical community, or other parents, who may have a similar thing their child is going through.
Early in January, 2016, one of the doctors at John Muir suggested that we may want to get a genetics test for Samuel. They were concerned that he wasn’t pacing as quickly as Jacob or Charlie, and they thought a genetics test would be helpful to rule in or out some things. So they pulled some blood on January 20th and sent it away for a genetics test.
The results took about three weeks to come back, and Dr. Tran finally got them on February 9th. We learned about this as Samuel was in his PDA Ligation surgery. Of course that’s the surgery that not only fixed his Patent Ductus Arteriosus, but also paralyzed his vocal chord. We took her call literally while Samuel was under the knife inside the Benioff Children’s hospital. Kristen and I did the call on my iPhone speakerphone, in a courtyard behind the hospital.
In short, Dr. Tran shared that Samuel had something called a genetic “micro-deletion”. As you may expect, a “micro-deletion” means there’s a small amount of DNA that’s missing. Originally she referred to a broad name of a PARK2 gene, but we got very specific information a bit later. Officially, Samuel is missing 351,219 base pairs in Chromosome 6, sub-section 26. We know this as a 6q26 micro-deletion.
The blood test results that came back show the following:
arr [hg19] 6q26(162,510,973-162,862,192) x1
Heres the breakdown of this reading:
arr – This indicates a chromosome Microarray test was performed
hg19 – This refers to the version of the human genome that was used for the test. As the genome is mapped, more information is available, allowing more exact results.
6 – The chromosome
q26 – The section where the missing material should be
162,510,973-162,862,192 – This is the “from” and “to” material that’s missing.
x1 – This means there’s just one copy of base pairs on each side of the chromosome, as you’d expect.
I’m not billing myself as an expert, but I’ve done a fair amount of research on this topic the past year, looking for answers. As such I’ve learned a lot. Of course you may remember from biology class that each human typically has 46 chromosomes. 23 are from the mom and 23 are from the dad. The last chromosome, Number 23, is an X from the mom and either an X or a Y from the dad that determines what sex you are.
Within each chromosome, there are base pairs of DNA. These are the building blocks and instructions that tell the body what to do, how to grow, etc. There are about 3,000,000,000 (3 Billion) base pairs in each person, spread across those 23 pairs of chromosomes. If you just focus on chromosome 6, there are approximately 171,000,000, or about 5.5% of all the DNA in your body.
Chromosome 6 is also broken into two “arms”. The short arm is called the “p” arm, while the long arm is called the “q” arm. (In case you’re wondering, “p” was chosen as an abbreviation for “petit”, while “q” was chosen because it’s next in the alphabet. Makes little sense to me, but whatever.) The short backstory is that the gap between the “p” and “q” arms is where the chromosome is attached to the spindle during cell division. Let’s not get too medical and just leave it there.
Samuel has his micro-deletion on the long-arm “q” section of chromosome 6, in a sub-section known as 26. There are only 27 sections on this chromosome, so he’s missing some DNA on the far end of this arm. 351,219 base pairs sounds like an awful lot of missing DNA, but remember this is out of 171,000,000 base pairs in this chromosome and 3 billion overall. Specifically, Samuel’s deletion is from base pair number 162,510,973 to 162,862,192.
So what does all this mean?
We’re not entirely sure what all this means yet. I’ve joined groups on Facebook for those who have deletions, and I’ve searched the Internet extensively to see who else is missing this. We’ve talked with a couple geneticists and Samuel, Kristen and I submitted some blood for extensive genetics testing (called Whole Exome Sequencing). Frankly, Kristen and I may end up learning things in this test about our own bodies that may be forecasting future problems like cancer, Alzheimer’s Disease, etc. So we’re a bit frightened to see what comes back.
The blood test results we should get in March will hopefully have some answers, or at least be able to further narrow things down, or be able to tell more definitively what we may have to deal with going forward.
There are all sorts of other children and people who are missing sections of 6q26, though the deletions are much larger (i.e. millions or tens of millions of missing pairs). We’ve also seen examples of people who are missing multiple sections (i.e. 6q26 + 6q27), or who have duplicate genes too. There are many different mutations that we’ve seen. But we haven’t found anybody who has such a tiny deletion, nor have we found anybody with the exact deletion, or reasonably close to the overlap. I posted the specifics on this page in case somebody comes across this and has something similar with themselves or their family. We’d love to talk with you!
Obviously the most interesting thing that Samuel is coping with is his Hypotonia, but since he’s still developing and can’t talk to us yet, we’re not sure what else we may be in store to deal with. We’ve seen others with 6q26 deletions showing symptoms of Autism, inability to speak until various age ranges from 3 or 4 all the way up to not being able to effectively communicate into high school. We’ve seen people who have some deletions who can’t go to the bathroom, have motor skill issues, etc. So we’re not sure what we’re in for.
For now, we continue to work carefully with Samuel on his physical therapy, occupational therapy and speech therapy. He’s showing great signs of progress almost on a weekly basis.
If you know something about this micro-deletion, or know of somebody who has something in 6q26, please feel free to contact us directly. We’d love to hear what your journey is or has been, and happy to share what we know at this point.
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!
Hi 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.
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.
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.
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.
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.
That’s about it for now. Happy January!
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.
Samuel 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.
Jacob 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 Care.com 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!
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 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.
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.