In this episode of Cribs, we’ll take a look at the sweet new digs of Samuel Mazza, who got an upgrade on Sunday.
Sammy started the day in his Isolette, where the top has been popped for several weeks now. But he’s been outgrowing that bed and no longer needs such a complex setup, so he put that on the market and decided to downsize and upgrade at the same time.
Samuel, who goes by Sammy to his friends and family, decided on a sweet new crib that is white with yellow, red, green and blue confetti. It has some nice wheels so he can be moved around easily, and it has a storage tray underneath the crib, where he can store his diapers, wipes, clothes and syringes. Sammy also says he stores the phone numbers from the nurses there too. He’s quite the ladies man!
Sammy moved in Sunday morning and immediately setup his mobile, and his musical light-up toy, which cranks out some really cool tunes! He also put up his “Be Mine” heart from Valentine’s Day, and he setup a new king-sized bed right in the middle.
“This is the next step in my move to dominate this NICU,” said Sammy, who’s still getting oxygen through a nasal cannula. “I’m pretty sure I’m the only baby with such a cool crib. I’m having a crib-warning party next week. I’ll be serving 24-calorie formula, so if you don’t like that, bring your own milk”
“It’s a pretty cool crib, “said 30-second-younger brother Jacob, “but I hope he’ll decide to stay here only for a short time and then come move in with me. I have an awesome Pack ‘N Play, a podster, several Rock ‘N Plays and an actual crib with Sammy’s name on it. It’s about time he blows this joint.”
The past week has been a blur. I’m writing this blog at 8:40am – about a week to the minute after Charlie died. The events of the past week have been unbelievable and heartbreaking, and Kristen and I have had a difficult time coping with what is now believed to be reality. Our little boy is gone.
The decisions we’ve had to make in the past seven days are decisions that no parent should ever be forced to make. We had to decide whether to bury our son or cremate him; we had to decide where to hold his memorial service (not a funeral) and who to invite, and we’ve had to decide how to honor him appropriately.
Thursday’s service had somewhere between 40 and 70 people. We’ll review the guestbook to get a better idea. We also had Charlie there in his urn, right next to the podium where Kristen and I spoke about him.
A good chunk of the people at the service came from John Muir’s NICU. One nurse told us that she’s never, ever seen a memorial service so well-attended by doctors and nurses. She said the boys have been so loved by the nurses, and Kristen and my involvement in their care on a daily basis helped develop a respect and friendship that make the doctors and nurses want to be there. This made us feel good.
We heard stories from the overnight nurse staff about how Charlie used to get some special attention in the wee hours. They also shared stories of how gassy he was – we know – and the various versions of his stink face – we know those too. We even saw some nurses we hadn’t previously met.
We also want to thank our family for coming in quickly from all over. Grandpa Bob, Grandma Selena and Uncle Brian came in from Twin Falls, ID. Grandpa Dave, Melinda and Aunt Sandi came in from South Florida. Grandma Mazza (a.k.a. Deebee) came in from Grecian, Costa Rica. Grandma Karen and Grandpa Rick came in from Visalia. Cousin Colleen came in from Visalia as well and Aunt Jamie came over from Burlingame. Even Kristen’s 96-year-old grandmother, Grandma Bordewyk, came in from Visalia. It’s been great having them all here for us.
“Deebee” holds Jacob.
Deebee holds her Sammy in the hospital. She took time to read him a book too.
96-year-old Grandma Bordewyk holds Jacob before Thursday’s service. She was so in love with him.
And of course we had some close friends in attendance. I have to give special thanks to Erica and Brady Hobby for connecting us with Pastor Cathy Burkholder at Community Presbyterian Church in Danville. Kristen and I had one meeting with Cathy and her staff, and they took care of the rest. What an outstanding and selfless contribution they all made, and we couldn’t be more grateful.
Following Thursday’s service, Kristen and I went over to John Muir in Walnut Creek and we spent some time with Samuel. Nurse Valerie and Nurse Emily had worked together to get Samuel into a special outfit we had picked out. It matched the one Jacob was wearing, and it was a variation of the outfit we had Charlie in for cremation. We took some pictures with our boys. We’re committed to taking more pictures with both boys together going forward, since we only had one photo of all three boys and us. We’ll cherish that photo forever.
I’m using Thursday’s service as a turning point of sorts. It’s easy for me to say I can move on from this event – the truth is I’ll never really be over this loss. Nor should I be. But I believe I can get back to functioning somewhat normal and be a great dad to Jacob and Samuel, and a great husband to Kristen. That’s all that really matters.
Last Monday was a great day. Charlie came home from the NICU and we had two of our three boys home. Kristen and I were so happy. Things were beginning to come together and we just had Samuel remaining to come home.
Just one week later – today – we spoke to the coroner, talked with people at a mortuary about cremation and finalized a memorial service at a local church.
Talk about a bad week.
We decided to cremate Charlie because we don’t want him being buried on his own someplace. A decision to bury him would be a decision for Kristen and I to choose our final resting place and we haven’t done that. Perhaps we need to do that, but we can’t be rushed into such a large decision. We also think it would be good to have Charlie here under our roof, so we can watch him and he can watch us. He’ll be a part of our lives forever and having him here ensures nobody will ever forget him.
Charlie’s remains were released to the funeral home this morning by the Contra Costa County Medical Examiner. The funeral home is working closely with us to expedite things so we can have him at the memorial on Thursday. We signed all the paperwork for the cremation, but there’s some other paperwork to be done by the county and state, and only after that is done will he be cremated.
I know I said we didn’t want to visit Charlie to see him again, but we changed our minds. So we got to see our boy one more time today. And my mother – his grandmother – finally got to meet her grandson. We brought an outfit for him to be cremated in, and we added some photos so he’s not alone.
Seeing him was somewhat comforting for Kristen, but it reminded me that my son is gone. It’s very clear though that it’s just a body and it’s no longer Charlie.
I spoke with the Deputy Inspector for the Contra Costa County Coroner today as well. He didn’t have a clear cause of death. I didn’t really expect him to have that today. It may be up to 90 days before we get something. I did give him some additional information and clarified some timelines for him. The inspector said they, and the doctors involved, aren’t looking at this as a SIDS issue. We agree and have good reason to believe Charlie had a hemorrhage or something else that caused him to stop breathing immediately and die. Only time will tell though.
The other thing we did today was meet with some nice folks at a local church to talk about a service on Thursday. They are helping out quite a bit, from the pastor to the deacons to others. The service will be Thursday at noon at the Community Presbyterian Church in Danville, but we’re keeping it to family, a very small group of friends and the doctor and nurse staff at John Muir hospital – Charlie’s second family. As a reminder to everyone, if you’d like to send something, we suggest you make a donation to John Muir’s NICU at this site: https://www.johnmuirhealth.com/secure/make-a-donation.html
Finally, I have to give a short shout-out to Build a Bear Workshop. Kristen wanted to get a white “angel” bear that we could have at the service. She had trouble finding one, so I called BABW in Pleasanton. A woman named Alexis heard our story and told me it was going to be her mission today to find us that bear. She called back a few hours later and said she found the bear, and was express shipping it from St. Louis. All of this was at no charge, too. I offered to pay but they wouldn’t take it. I’m not sure I’ve ever shopped in a BABW store, but I will now. Special thanks to Alexis!
I was going to post this on Friday, but obviously other things got in the way. I do have some good news: Samuel is back in Walnut Creek at John Muir. This is great for several reasons: (1) We’re really comfortable with the nursing and doctor staff there, (2) there are private rooms for us to use and (3) We can bring in other people – pretty much whomever we want.
We appreciate the care we got at Oakland, and some of the doctors do their rotation there as well, since it seems the neonatologist group is from a third-party company. Most are not directly employed by the hospital. We’re grateful that Sammy’s PDA was closed and he’s on the mend.
We visited with him on Saturday and Sunday, and my in-laws drove up from Visalia to be with us, so they got to spend time with Sammy too. He’s a lot more active these days. Yesterday we had story time with him and we’ve requested a mobile for his crib, since he seems really interested in what’s going on.
The doctor on Saturday talked to us about a small “adjustment” for Samuel. They want to snip the underside of his tongue. It sounds painful but they say administering a pain medicine would actually be more painful. It’s quick and the tongue heals really quickly. This will help him start nippling and will help with the overall use of his tongue.
This kid can’t catch a break!
Anyway, his grandma Barbara (a.ka. Abuela, a.k.a. Deebee) is in town today and Sammy’s anxious to meet her. It’s the only grandparent he hasn’t met yet.
First, thank you all for your show of support for our beloved Charlie. I’m so grateful many of you have connected with him both in person and virtually through my blog updates, Facebook postings and Instagram pictures and videos. The sentiments have come from people near and far – some of whom I don’t know, and some who I haven’t talked with in years. That’s OK.. I appreciate your words to help us.
We’ve had a few people ask where to make a donation or if there’s anything they can do. I don’t think we need any donations personally at this time – other than lots of positive love for Charlie, Samuel and Jacob.
But if you want to make some sort of a financial donation, I want to suggest that you make a donation to the John Muir Neonatal Intensive Care Unit (NICU) in Walnut Creek, California. These doctors and nurses have been part of our family since December 9th when Kristen gave birth. We’ve gotten to know them, hear stories about their family, they’ve been an awesome source of positivity and reassurance and they couldn’t be nicer people. We’ve probably had 30 or 40 nurses take part in our journey and all have been awesome. I want to particularly call out Valerie, Emily, Kris and Colleen, as they’ve had our boys the most. When we saw the doctors and nurses at the hospital on Friday, while visiting Samuel, they were in tears too.
This hospital provides a great service to premature babies and their families, and I can’t think of a better place to make a donation in Charlie’s honor.
Friends and family: We have the most horrible news possible to share. Charlie suffered a horrible event this morning and despite heroic efforts by EMT, firefighters, police officers and hospital staff, he was not able to be saved. Charlie Robert Mazza died at about 8:40am.
Kristen and I are devastated, to say the least. It’s simply unfathomable that I could be holding my boy at 7:30am, and he’d not be breathing at 7:40am.
We don’t know yet what caused this horrible event, but he developed a bloody nose shortly after 7:30. Grandpa Bob was holding him and then gave him to our nanny, Stevie, who noticed that he had a small dab of blood in his nose. Grandma Selena ran him up to Kristen, who came down the stairs screaming to me for help. I was already in my home office doing some work.
I ran out to see Charlie’s bloody nose and he was looking a little pale. I called our pediatrician, Dr. Nash, but almost immediately I decided he wasn’t breathing and needed CPR. Kristen called 911 and I laid Charlie down to start CPR. I had Dr. Nash on the phone while I was doing this and he was giving me pointers. I checked for choking hazards, tried rubbing his back vigorously and just did CPR.
The EMT crew was on-site within 7 or 8 minutes and took over CPR. They hooked up monitors and we could see there was no breathing or heart activity. They kept going, trying to install various medicine. Then they decided it was time to move him to the ambulance and to race him to San Ramon Medical Center.
Kristen and I raced out the door immediately and got ahead of the ambulance, but then it raced past us. We were just a couple minutes behind them arriving at the ER and we walked into a full triage attempt.
Doctors and nurses were working hard trying to stabilize him and they continued CPR. They continued until approximately 8:40am, and the two doctors on-site looked at each other and called off other efforts.
I was strong until that point, but Kristen and were in complete anguish. They let us hold our baby boy for about 20 minutes.
Doctors will do an autopsy to try and determine what happened. This may take a few days to complete, and it may be weeks or months before results come in.
We have Kristen’s mom, dad, step parents and sister on-site tonight. My family is coming in beginning Sunday. I don’t know if we’ll have a service other than something with our family.
To Charlie: We love you buddy, and though you won’t physically be here, you’ll be with us forever. We cherish the short time you were with us, and we were with you. Your mom and dad love you forever and we’ll see you someday.
Here are some of our favorite pictures of Charlie.
It’s been about a week so I thought I’d post an all-encompassing update. Some of you may follow my Facebook page for more “real-time” updates on a few things, but here’s a good recap of the last week.
First, Samuel had his PDA surgery last Tuesday. They were in and out faster than they thought and there were no complications. The PDA was bigger than they expected – 4mm+. One of the cardiac surgeons told me that’s bigger than many of the regular arteries that service the heart, so this surgery was a must!
Sammy was incredibly puffy the past few days, but the swelling is going down. He tried to cry on Sunday night – we’re not sure if it’s because he was in some pain or was just gassy. We thought he may be in a little pain, since all painkillers have been stopped. So they gave him some Tylenol. Still, we know he was gassy too! It was kind of good to see him want to cry, though, as we’ve really not seen much from him. He’s just been too tired and exhausted from trying to breathe.
Sammy will stay in Oakland at least a few more days. They may try to do an echo on his repaired PDA Monday or Tuesday, and that will also examine what’s going on with his lungs. Based upon that, they’ll determine when he’ll go back to Walnut Creek and John Muir. We like it there better because of the nurses, the private rooms and the overall experience. Plus it’s closer and we can bring his brothers with us when we visit.
One of the doctors wants Sammy to stay in Oakland so he’s closer to pulmonary doctors, but agreed to talk with us again after the echo. We’re pretty insistent that unless absolutely required, he goes back to Walnut Creek.
Kristen is one happy mom, taking her boy home. Todd was busy working and couldn’t be there.
Charlie arrives at home
Charlie was also on the move this week – from Walnut Creek to our house! He finally arrived home on Monday afternoon, following a 68-day stay in the hospital. We’re excited, but nervous, to have him home with Jacob. Now we have to try and get them on the same feeding, pooping, peeing and crying schedule as fast as we can, otherwise we’ll be up all night tending to both. We’ll have photos of him at home later.
One of the things you do when you’re getting ready to come home is to have your circumcision. I had the unfortunate job, with my dad (Grandpa Dave) of witnessing this poor little boy get his penis snipped. Dr. Nash did his usual routine of jokes – including one my father thought was the best thing ever (“I remember when I had my circumcision… I couldn’t walk for a year!”)
Charlie tried to stop the circumcision by peeing at Dr. Nash right as he was giving the lidocaine injections, but Dr. Nash has done thousands of these, so he was quick to react and avoid the tinkle. Charlie did manage to pee on me twice on Saturday while I was trying to change him. This was his payback for me allowing Dr. Nash to do his procedure.
Finally, there’s Jacob. Not a lot to report on him. He’s eating like a little boy should, and he seems to be growing quickly. He’s fairly fussy these days, which means he’s either hungry for more or incredibly gassy. It’s a little of both, I’m afraid. He’s still sleeping in our room in a Rock ‘n Play, and he grunts a lot while he’s sleeping. I think I’m going to sleep on the sofa the rest of the week while Kristen brings both of them into the bedroom and handles them at night. I need to work, so I actually have a good reason to get some sleep.
Our nanny, Stevie, started full-time today and she’s doing a great job. The help is so direly needed. I also posted an advertisement for a night-nanny three nights per week. We’ll see what kind of traction we get on that.
Special thanks to my dad (Grandpa Dave) and Melinda for flying out to see us on short-notice. They were a huge help this past week with everything from changing diapers to feeding the boys to feeding us! We’re left with lots of leftover and frozen food.
Kristen’s dad, Bob, and her stop-mom, Selena, are out from Idaho visiting us this week. They’re excited to see the boys and we’re looking forward to their help.
My mother will come visit us next Tuesday for a week. She lives in Costa Rica, so it’s a bit more difficult to get here. She wants to be called Deebee, just like she’s been called by her granddaughters for 14 years now. But Kristen and I are going to surprise her and tell her she’s to be known as “Abuela” to our boys.
Finally, I have to give a special shout-out to our friends Brady and Erica Hobby, who made us some calzones and brownies. Just wow, they are so good! And to Laura and Charles Seidel for another donation of clothes to our growing boys. Thank you so much!
That’s it for now. More later when I think of it, or have more to update.
On Tuesday, Samuel had his PDA closed at Children’s Hospital, so now he’s into recovery. I visited Samuel today in the hospital with my dad, Sammy’s grandpa. Kristen got some sleep in the morning and spent more time today with Charlie.
Samuel still had his breathing tube, his arterial line and his two IV’s. He’s still on morphine for pain, but they’re down to a very small amount. The doctor told us that they are hoping to wean him off the morphine and breathing tube today.
He still looks very puffy, though it’s less than Wednesday. We hopefully should see some more progress on Friday and each day it will get better.
The cardiac nurses came by to change the dressing on his incision. The incision was about two inches long. I managed to snap some photos below.
A view of his incision on the right. The left “x” is where his chest tube was on Wednesday.
A closer look at Sammy. He’s very puffy right now.
Samuel resting on Thursday.
After visiting with Sammy we went to visit with Charlie at the other hospital in Walnut Creek. The doctor said she called Dr. Nash, and his circumcision was scheduled for 3:30pm today.
That was an unexpected surprise.
I held him for while and then just about 4pm, Dr. Nash was ready to go. My dad and I both went with him and witnessed the event. I’ve never seen a circumcision before and I’m glad I’ll only have to see one more (Samuel). Dr. Nash told jokes to keep us comfortable, but I was somewhere on the verge of crying and having a heart attack. Right after Dr. Nash injected some lidocaine, Charlie tried to pee on him. Dr. Nash said it was his only and last defense!
Dr. Nash did a great job, but it was a very stressful event for us to witness. No pictures of this, obviously!
The fact he had this done means he’s close to being able to come home. A date isn’t set yet, but I expect to see him home next week.
I thought I’d post a late Tuesday evening update for everyone. It was quite the day for the Mazza family – especially Samuel. Today he had his PDA ligation surgery, where they closed off his PDA.
Kristen and I got to the hospital just past 9am, as we were told there was a chance he may go into surgery earlier than the scheduled 12pm surgery.It turned out the morning surgery went off without any delays, so we were second in line. It gave Kristen about two hours of hold time with Samuel.
We had visits from multiple social workers, multiple nurses and a few doctors, including the pediatric cardiologist, Dr. Olaf Reinhartz, and the anesthesiologist, Dr. Amit Gupta. Dr. Reinhartz was fairly short, explaining the surgery and reviewing some paperwork. He said it would be about an hour of preparation with IV’s and a central line being installed, but once he went into the room it would be about 45 minutes or so from start to finish. Dr. Gupta explained how the anesthesia worked, what he would do, potential blood transfusions, if necessary, etc.
They took Samuel away at 12:45. We got to kiss him and give him a hug, and then into the OR he went. We reasonably expected it would be a few hours before they called back looking for us. Dr. Reinhartz said he’d come by and tell us how the surgery went. So Kristen and I went outside to relax a bit, and get some fresh air. And we called Dr. Tran at Walnut Creek to check on some test results.
During this break, Dr. Tran told us that Charlie had been reduced yesterday from 2.0 liters per minute of flow down to 0.5 liters per minute, and he was doing so well they were trying him with all oxygen and flow turned off. He was doing awesome, taking his feedings without any trouble. So that was a piece of good news in the middle of our day.
After that call, I grabbed some lunch while Kristen went to pump. Lunch was brought to Kristen in the NICU.
As I was eating, at 1:50, Kristen texted me to say that the surgery was done and he was coming back shortly. So I scarfed down my chicken quesadilla and hurried back to the NICU. I made it about 10 minutes before Sammy arrived. The total time away was about 1.5 hours – far less than the 2-3 hours they expected.
It took the nurses and doctors about 20 minutes to get him settled in and while that was happening Dr. Reinhartz came by to talk to us. He said the PDA was very large, but it was closed and the surgery went very smoothly without any complications at all. I later spoke to another cardiologist who checked, and said the PDA was “4+”, meaning it was more than 4mm. The PDA was originally 3mm and went down to 1.8, so hearing it was 4mm was very surprising. This other doctor said the PDA was actually larger than some of the main arteries going into the heart, so this surgery would make a big difference on his well-being.
Samuel had IV’s in each of his feet, and a central line into a main artery in his right arm. This would be used to take any blood samples they would need without sticking him anymore (he’s been stuck enough with needles!). He also had a drainage line coming from his left side, near where the incision was made. He needs this for any swelling that may take place, so it’s a relief valve of sorts. And finally he had a breathing tube down his throat.
When he came out of surgery, he wasn’t doing any breathing on his own – the ventilator was doing everything for him. He just had too much medicine in him. When we called about 8:30pm on Tuesday to check on him, the breathing tube wasn’t doing anything – it was all Sammy. Maybe they’ll take it out tomorrow.
Kristen and I stayed for a bit of time after he came out, but we realized quickly there wouldn’t be much for us to do. He needed rest and wasn’t going to be able to interact with us, so we went to meet my dad, Melinda and Jacob over in Charlie’s room in Walnut Creek.
Hopefully we’ll start to see Samuel show signs of improvement on Wednesday. We can’t wait to get him back to Walnut Creek, and then finally to our house.
Tuesday is a special day. It’s the two-month birthday for the boys. But for Samuel, it’s another special day. It’s the day he’ll have surgery on his heart to repair the Patent Ductus Arteriosis (PDA).
Sammy’s surgery is slated sometime between 8am and 12pm. He’s slated to be the second surgery of the day, but could move up to first if the first child has problems, isn’t ready, doesn’t show up, etc. The doctors suggest that to be safe we should be at the hospital by 9am, so it will be a long day of waiting.
The nurse called us on Monday to review the risks of the surgery. This is something they do all the time, but there are many things that could go wrong, including impacting his vocal chords, infection or death. We don’t want to think about those things.
Doctors say they’ll know right away that the surgery is a success. They cut him open in the back, between the 3rd and 4th ribs, they’ll deflate his lung, clamp the PDA, sew it shut, check for blood flow, reinflate his lung and then sew him shut. He’ll be on an IV, a central line and most likely a catheter, not to mention a breathing tube / ventilator. It takes more than an hour of prep, but the surgery will only be about 45 minutes once they start. We were told it was faster before, but that was clarified on Monday.
On Monday Samuel got to meet his Grandpa Dave. Samuel’s middle name is David, and is named after him. It was a special meeting for my father, and he was quite emotional seeing his grandson in this state. I look forward to showing off Samuel in a better state in a few days when the PDA is closed and his blood and oxygen flow much better through his body.