There’s a part of me that wants to stop writing this series of blog entries. At this point in the story, Jacob had come home from the NICU, and in a novel or movie, or a Chicken Soup for the Soul version, the story would be finished. Everyone would go on to live happily ever after, cue the credits, no more issues, all sunshine and rainbows. And while we were (and are) happy, sunshine and rainbows is not always the order of the day. The roller coaster had returned to the station, but there were other coasters to come.
The rest of June
Shortly before his release from the hospital, we did the baby announcement e-mail, and we tried to reflect the hope and fun over the nervousness. When Andrea and I got married, we did a PandA theme — “Paul and Andrea = PandA”. The invite was done up like a “show” announcement (we were married in a theatre), we had pandas as our logo and branding, a friend made a panda wedding cake. We call each other panda. Sometimes a little too much, but it was a nice idea. For the birth announcement, we continued the fun theme:
You may remember Paul and Andrea (PandA) from such smash successes as “PandAs in Love”, “The PandA Den”, and “The Great PandA Wedding”. But you haven’t seen anything yet – they searched high and low to bring you the best in new talent, including casting in Hawaii! Now PandA Productions is pleased to announce the latest edition of the PandA Chronicles: “Dawn of the Cub”.
This episode debuted on May 29, 2009 at 3:21 p.m. to a limited showing at the Ottawa General Hospital Theatre, starring Jacob McKenzie Sadler Horton as “the cub”. Definitely a charmer, Jacob (aka Jack the cub) was the star attraction of almost 37 weeks of promotional appearances at ultrasound clinics around Ottawa and a partial dress rehearsal 10 weeks earlier.
He debuted in dramatic fashion in Delivery Theatre (Section C), facilitated by stunt coordinators Dr. Moretti and Dr. Jones, and with both producers in attendance. Andrea received critical acclaim for her co-starring role and is now starring in her own spin-off called “The Great Recovery”. Paul received Honorable Mention for Best Supporting Marsupial in a Non-medicated Role.
Jacob made such an impression on the audience that they held a command performance in the Baby ICU Studios. Jacob is taking advantage of this opportunity to participate in additional training and workshops on breathing, eating, and tanning (which makes up for too much time playing with his little friend Billy Reuben). After several days of working closely with technology, Jacob unveiled his latest creation called “J-Cub in a Cot: Live and Unplugged”. It is anticipated that his training will be completed shortly, before his private limo whisks him away.
The producers are participating in workshops too on costumes, catering, and AST (Advanced Snuggling Techniques). In their spare time, they are completing set design at the Roundhay Theatre. Unfortunately, this has left them with little time to respond to Jacob’s fan mail and phone calls but promise they will catch up once Jacob moves to his permanent stage. In the meantime, they express their gratitude to the extensive support received from the PandA Network, from dress rehearsal to debut and beyond!
Early reviewers have included Nan Sadler, Nanna and Poppa Horton, Becky and Dean, Marie, and Mike and Terry. The Malcolm Media Group, Horton Communications, and Sadler Studios all gave him two thumbs up!
Highlights of the Reviews:
“Ha ha, Uncle Paul is going to get peed on!” – Stephanie (NB: Completed June 3rd)
“He’s beautiful…sob” – Marie
“It’s been 48 hours! Where the #?!$ are my bleeping pictures?” – Julie
“Hey squirt!” – Becky
“I learned how to walk, now when do I get to meet my new cousin?” – Grace
“He’s so tiny!” / “ He’s so adorable” – Everyone
“Hello, sunshine!” – Nana Horton
“This stapler doesn’t work very well.” – Dr. Jones
“Would you like to hold your baby?” – ICU nurses’ stupid question of the day
If you have read the previous entries, you can pick out some of the tough parts, otherwise we mostly hid behind the generic wording. Jacob came home on June 13th, a Saturday. We celebrated by cuddling and cutting the hospital bracelets off our wrists. And then settled into the life most new parents do when they come home from the hospital. Cuddling. Sleeping. Feeding. Pumping. Yes, pumping. Jacob couldn’t latch very well yet, and while we were able to feed him from the Haberman feeders, we wanted to get him onto the breast. So, regular consultations began with a lactation consultant. I don’t know how Andrea felt, but for me, I thought it would be just a matter of time and some trial and error. Jacob was out of NICU. He had “normal” issues left. Or at least, normal-ish. It was a time for optimism, fueled by denial perhaps. Although it appeared frustrating at times trying to get the right angle, more and more he was at the breast.
I was fortunate in that I was able to be off work for two more weeks. I had planned to only be off for just two weeks after the birth, but that time was eaten up by the NICU, so I took two more weeks so I could be home with Andrea. We went out in the stroller, hung out, tried to decompress. We introduced Jacob to the library and found out about the future baby time schedule for Andrea and him. They gave us a bag of stuff for new mothers, but no library card yet! We read to him, had a few visitors, showed off our bundle. My mother visited with my sister and niece, some friends dropped by. Simple pleasures.
One of our fun outings was to Westboro to check out a couple of baby stores. In addition to having a decent collection of bottles and nipples, including even some Haberman feeders, they had slings. Baby slings, baby backpacks, baby carriers of all makes and models. And they let us try them out. You could even rent a couple, try them out for a week, and then choose. Which we did. It was awesome. Nothing medical about it. Just fun parenting stuff.
But the knot in my stomach wouldn’t let go. It was there. Not constant. Not debilitating. Just present. I wanted to believe I could just relax and enjoy our baby, but I knew that some of what we were feeling was a bit of a lull. There was other stuff coming, the only question would be how serious. I had learned that parents of NICU graduates often suffer from a form of Vulnerable Baby Syndrome, and in mild forms it looks like simple helicopter parenting while more extreme forms look like paranoia or PTSD. It’s not simple over-protectiveness, like helicopter parenting. NICU parents don’t invent things to worry about, we have lots of issues already to worry about. Some we could do stuff about, some we couldn’t. For me, it was a form of hyper-vigilance at times. If Jacob coughed three times at night, and couldn’t seem to stop, I was on my feet and moving to his bedroom to see if this was a NICU-like “spell”. If he had a bad feed, and didn’t take his bottle, I wondered what that meant, if anything. During the early weeks home, my fear was mostly centred around his breathing.
June was also the month when we got asked “the stupid question” the first time. Think back to when you were single, it was “So, when are you going to meet someone?”. Then, when you were dating, “Is it serious?”. Then when serious, “So, when is the wedding?”. Then married, “So, when are you going to have kids?”. These are all incredibly stupid questions to ask anyone and should be banned from conversation.
The single person may have just come out of a bad break-up or might be incredibly lonely; the dating people may be having relationship problems; the married person might be having conception issues. And really, it’s none of your business.
For me, though, the new stupid question came completely out of the blue. I’d experienced all the other ones, but I was not expecting someone to say, “So, are you going to have more?” just two weeks after leaving the NICU. Honestly, I wanted to say, “Excuse me, do you think I could survive this one first?”. A friend, who also went through a similar experience, said she wanted to be even more blunt — “Can we wait and see if this one lives first?”. An incredibly stupid, clueless question to ask NICU parents, or any parents really. But it just emphasized the gulf between our experiences and other people’s. I was focusing on whether I could survive this roller coaster, and someone wanted to know if I wanted another ride.
We saw a pediatrician, got Jacob weighed, measured, etc. The doctor estimated low fifth percentile for size and weight. That, in and of itself, was not a huge concern. Someone has to be in the fifth percentile, just as someone has to be in the 95th percentile. They only worry if you change percentile lines going up too fast or down at all. Jacob couldn’t drop far anyway, but we would have to watch. We also did the “philosophy of preemies” dance for the first time — any baby before 37 weeks is considered a preemie, and so they adjust the milestones by the number of weeks premature. And use a totally different curve line to account for the early birth. Jacob was born at 36w, 5 days, as close to 37 weeks as anyone. Yet he also was in low fluids for 10 weeks — did that make him a preemie or not? Some doctors said yes, some said no. When I would say preemie, Andrea would quickly correct me to say “Not really, he was 36w, 5d”. While that may seem like mere semantics, it was the beginning of a difference in view between us on some of the medical issues and what they meant.
However, we also realized we were pretty lucky over all, not just for the Ottawa General NICU being close, but that the Children’s Hospital of Eastern Ontario (CHEO) was also in Ottawa. No long commutes, easy access to experts. We were referred to their physio department to have a look at Jacob’s broken clavicle (nothing to do) and his “torticollis”. If you’ve ever slept wrong and woke up with a stiff neck, it’s basically the same thing. Except in Jacob’s case, and with a lot of babies, this stiff neck resulted from his positioning before birth. Some stretching was in order to help correct it, and we started regular visits to CHEO to see a physiotherapist (P/T).
June 29th rolled around. Jacob’s 1 month birthday. I haven’t mentioned much to this point about Jacob’s herniated umbilical cord, but yes, he had one. It basically meant his belly button was an outie about the size of my thumb. The hospital checked it, said we should monitor it regularly, and check to see if it would “collapse” when pressed on. In other words, we had to press on the end and see if it would go back in. If it did, no worries; if it didn’t, or it got hard, we’d have to bring him to emergency. Apparently, in some Western countries, they push it in and put tape over it to hold it in. In some Asian countries, they put a coin over it, push it in, and tie it back to hold it in. Doing so means it disappears in about a year. Most Western countries do nothing about it, and it goes away also in about a year, treating it mostly as a cosmetic issue. After that year, if it doesn’t go away, they remove it through surgery if desired. We thought “Okay, we can do this, seems minor” and tried to get over our squeamishness of poking it and feeling it squish inward.
But the herniated umbilical cord also meant that Jacob didn’t like being on his stomach much, or so we thought i.e. that it was the cause. Not much tummy time to start with. On his 1 month birthday, we put him on his tummy, let him play for a bit. And he managed to roll over. I was ecstatic — Jacob rolled over already? Wasn’t that great! What a superstar!
Except we found out from the pediatrician and P/T that rolling over so early wasn’t great. Jacob shouldn’t have had enough tone in his legs and arm muscles to do that. I confess I didn’t really know what “tone” meant when they said it. I always thought “toning” was a good thing, like the way it is used with adults and exercise. Apparently not. It was referring to the physio standard of “too much or too little” muscle tone. Too little was an obvious problem, but I’d never heard of too much. As a result, I kind of dismissed it. I mean, really, could too much tone really be a problem? Ah, the naivete of that thought.
I was back to work, just starting to figure out how to balance things out. My boss, B, was awesome. Whatever time I needed, I could take it and then figure out the paperwork later. In addition, I had a staff member, A, who could handle the extra workload while I was away, whatever needed to be done. It was clear my first priority would and should be Andrea and Jacob, and work could be low on the list of worries.
Except here’s the thing. I take my job seriously. I derive some of my personal identity from how I approach work in a professional fashion, and ditching work without worrying about coverage is not in my psychological make-up. So I had a solid backup in place, and a supportive boss but I still wanted to be a good manager. The uber-new-dad, perfect manager / employee who got the balance right, figured things out. I wanted that, I didn’t accomplish it. I don’t want to spoil the story, but for the 3 months after Jacob was born, I never worked more than 3 days straight without having to take time off for an emergency, doctor’s appointment, etc. This was on top of the unexpected month I took when Jacob was born, and the previous regular leave in the ten weeks after the PPROM when I was going to the hospital once a week with Andrea, etc.
The number of appointments over June, July and August was unreal. We looked back in September and realized that on average, we had 2-3 appointments per week for the 12 weeks after Jacob came home. The pace was relentless, and partly why my knot never disappeared. Each time it was “okay, we’ll monitor, come see us again in 3-4 weeks”.
Andrea’s mom visited for a week about the time I went back to work. Separate from just the pleasure of seeing her hold her grandson, it was heaven for me, as I stopped worrying about Andrea and Jacob for a bit and let her worry about logistics, cart them around to some appointments. She took them up for a special consult with genetics to talk about his asymmetry and cataracts, but they were more interested in the link between the cataracts and the herniated umbilical cord. Apparently, they were doing a study and there appeared to be some link. They offered to do a genetic workup on Jacob, Andrea, and Marney, if we were interested, but as it would do nothing for treatment or change outcomes for Jacob, it seemed unnecessary poking and prodding of Jacob to do the blood test. Interesting, but not enough to warrant the study. We also had a visit from Jacob’s Great Grandfather, dubbed GG. It was great to see four generations of the Horton clan together on one couch, along with Andrea’s sister and her daughter.
Jacob started playing more on his Winnie the Pooh mat with a musical mobile above him. We experimented with a co-sleeper we got from a friend, and let Jacob try it out for naps. We thought it might be a good thing in the morning or at night perhaps if Andrea wanted to lay down with him for a while in the bed after I was gone. At the middle of the month, things seemed to be going well over all, Jacob was relatively stable, and we decided to show him off at the cottage to the entire Malcolm clan. It was a very normal weekend, figuring out diapers, sleeping arrangements, all in a new environment. Normal parenting stuff. It was a bit stressful, but overall, fun.
We had no idea that another week from hell was about to begin.