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!