One Year

My sweet baby girl turns one today. I just can’t believe it. It has been quite the year. Somehow, it has been the longest year ever to pass by in the blink of an eye. Whenever there is an anniversary like this, I always think back to where I was and what I was doing the previous year, and if I am where I thought I would be in a year.

A year ago, I was in the recovery room after Penelope’s delivery, doing lots of skin-to-skin time with my tiny little newborn. I wish I could say that I was basking in the happy afterglow that comes after a birth, but my happiness was tinged with worry. I couldn’t shake the feeling that something was wrong. I was, however, completely in love with my baby. She was sweet and cuddly right from the beginning.

Newborn Penelope

Newborn Penelope

When she was born, I thought about what her first birthday would be like. I imagined that I would be back at work, and would have to fit her birthday party in around my work schedule. I pictured making her birthday cake and how we would take photos of her eating it and making a huge mess. I wondered if she would be walking yet, and what words she would be saying. How would she and Charlotte be getting along? I am somewhat ashamed to admit that I was dreading our house being under siege by a toddler again- that oh-so-exhausting period when these little ones are moving around; crawling, cruising, climbing, toddling, and getting into everything; not knowing that virtually everything they want to do would kill them without interference from someone older and wiser.

And now here we are, a year later. I have extended my maternity leave and so am not back at work yet. Charlotte and I will make her a cake, though she won’t be able to eat it (it brings tears to my eyes to type that sentence). She’s not walking; she’s actually not yet sitting up on her own, and she isn’t talking at all yet either.

What is even better than I had imagined, though, is Charlotte and Penelope’s relationship. Penelope absolutely adores her big sister; everything Charlotte does is fascinating to her, and Charlotte can always bring a smile to her face. And Charlotte is wonderful with her baby sister- she is always hugging her and kissing her, and she does so gently and lovingly. When Penelope had the NG tube, Charlotte would always help me as I retaped the tube- she would distract Penelope by singing to her and stroking her head to keep her calm. Despite all the time Charlotte gets left at home when we take Penelope to her various appointments, she is never jealous or resentful. This loving sisterly relationship has gone well beyond my wildest dreams of how the two would bond.

 

Sisters!

Sisters!

Penelope herself is a wonderful baby. She has a bright smile that lights up the room. She loves to cuddle and to be held. She likes playing with soft, crinkly books and biting on anything plastic. Actually, it doesn’t have to be plastic- those chompers have taken bites out of my finger on more than one occasion. She is, surprisingly, quite self-regulating. Nursing her was a nightmare those first seven months, but it was because she was smart enough to limit her feeds to volumes that she could handle without choking. When she does something out of the ordinary, it is money in the bank to bet that something is going on- teething, virus, whatever. She is a creature of routine. She now sleeps through the night, which is just so amazing. I love her so much and wouldn’t trade her for anything.

 

Mommy and Penelope selfie!

Mommy and Penelope selfie!

So, yes, things are not at all how I thought they would be. This past year has been fraught with heartache and challenges. But there has also been a lot of joy- like the first time Penelope smiled or the first time she rolled over- and a lot of love.

And on this day, I am thinking ahead to next year, Penelope’s 2nd birthday. Will she be walking and talking by then? What difficulties lie ahead of us this year? I don’t know. No one knows. But there is one thing I know for sure; no matter what Penelope is doing, no matter what milestones she has met or missed, no matter what her capabilities are, she will be very, very loved, by a lot of people, just like she is this year. And that is more than reason enough to celebrate.

 

The happy birthday girl!

The happy birthday girl!

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My Rockin’ Saturday Night

As the events of Saturday evening unfolded, I kept hearing Whigfield’s 90s anthem in my head, and thinking, “I doubt this is what she had in mind.”

To get to what happened on Saturday night, I first have to take you back to Thursday evening. On Thursday, I went out to dinner with a friend I hadn’t seen in awhile. Clare and I caught up over some delicious Mexican food, and two hours flew by in the blink of an eye. When I got home, Mark had put Penelope to bed, and she was sleeping soundly. Charlotte was heading to bed, and all was good. Once Charlotte was in bed, Mark met up with some of his friends for the evening. Around 10pm, Penelope woke up, and remained pretty unsettled for the rest of the night. This was very uncharacteristic of her- typically, she goes down around 7pm, and sleeps for a solid 10-12 hours. So I knew something was up with her, but I wasn’t sure what.

On Friday afternoon, Penelope was sitting in her high chair as her feed was going through, and she began to have these weird spasms. I had never seen her do anything like that before, but she seemed fine otherwise, and after about ten minutes or so it stopped happening, so I didn’t concern myself too much over it. It was an unusual enough movement, though, that I recorded her doing it on my phone- I knew she had a neurology appointment coming up, and thought it may prove helpful to discuss with the doctor.

Later in the day on Friday, as I was talking about the spasms with Mark, he told me that he had seen her do it on Thursday evening. Upon hearing that, I started getting more worried about it. Two separate episodes with the same type of spasm, and the fact that she had such a restless night, bothered me. I wondered if it could be related, and what it all meant.

On Friday evening, as we were sitting around the dinner table, she started having the spasms again. Maybe it was just the fact that I was worried about it at this point, but they seemed a lot worse, and I could tell that it wasn’t something she could control and that it was bothering her. This episode of the spasms was more prolonged than the previous episodes. I took her out of her chair and held her to see if that would stop it from happening, but it didn’t. She began to fuss and cry, and I could tell that she was getting tired. I took her into her room and got her ready for bed and held her for awhile more- all the while the spasms kept happening. I put her down in her crib to see what would happen- she had a couple more spasms and then fell into a deep sleep, literally about 30 seconds after I placed her in the crib.

This concerned me greatly. We have known that she is considered high risk for seizures since we got the MRI results in December. Could these spasms be seizures? Certainly, the way in which she fell into a deep sleep after the prolonged episode of spasms could indicate postictal (post-seizure) behaviour, but she didn’t fall asleep after the other episodes. I wasn’t quite sure what to think or what to do. After talking about it with Mark, we decided to leave her be for now, and watch to see if happened again, and if it did, I would take her to the ER. Despite having come to this decision, I felt very uneasy. I didn’t sleep well on Friday night, and neither did Penelope. She kept waking up and crying, which was so unlike her. At about 1am, Mark set up the video monitor in her room so we watch her from our room. Even though we had that monitor at the bedside, I still didn’t get much rest, worrying about what this all meant.

The next morning, Penelope seemed fine when she woke up- she was her usual happy self. She had a couple small spasms while her feed was going through but nothing like the night before. Still, it wasn’t sitting right with me. I took Charlotte to her friend’s birthday party that morning, which served as a great distraction. There’s nothing like seeing little girls dressed up as princesses and hanging out with Queen Elsa to take your mind off your worries.

Charlotte at the princess party

Charlotte at the princess party

 

When we got home, Mark reported that Penelope was fine and didn’t have any spasms while we were gone. As reassuring as that was to hear, I still had that sick feeling in my stomach that this wasn’t right. And then, while her afternoon feed was going, she started having the spasms again. They still weren’t as bad as the ones on Friday night, but I’d had enough. I had to get her checked out, for her sake and for mine.

So once the feed was finished, I loaded her up in the car, and we headed downtown for the Sick Kids ER, and we arrived around 6pm. As ER experiences go, it was actually pretty good- we were seen in a timely fashion and I felt my concerns were being taken seriously. I was extremely glad I had the video of the spasms on my phone- the doctors being able to see what was happening to her was invaluable, and since she didn’t have any spasms while we there, they wouldn’t have been witness to it otherwise.

When all was said and done, we left the ER around 11:30pm. We saw an ER resident, the staff doctor, and a neurology resident, and had blood work done- all in a span of less than six hours. Quite impressive. The decided upon course of action is to have an EEG done this morning to see if that can tell us anything, and to meet with the staff neurologist after the EEG. They normally sedate babies for an EEG, and unfortunately there are no sedated spots available for today, so I’m hoping that I will be able to get her to sleep naturally- otherwise, they won’t be able to do the test, and we will have to wait for a sedated spot to open up.

The good news is that she isn’t really having the spasms anymore. She will do the odd movement or grimace that doesn’t seem quite right to me, but nothing like what was happening over the weekend. So now it’s more wait and see, I guess. The other good news is that all of this has shaken me out of my funk from last week- it’s not that I’m happy that this has happened, more like it’s forced me to focus on what is important, and really reinforced how crucial it is to stay positive through all this.

Happy to be getting hugs from her sister

Happy to be getting hugs from her sister

So I know that reading this will make all the single and childless readers of my blog super-jealous of my partying lifestyle, but I make no apologies. Saturdays filled with princess parties and hanging out in the ER are just how we roll around here!

The Blues

It’s summertime- the weather is warm, the sun is shining, Mark is officially done summer school, The Mindy Project is streaming on Netflix, Penelope’s G-tube surgery is done, and Charlotte is as wonderful as ever- I have every reason to be happy, and yet I’m feeling a little…meh.  It’s not like I’m facing a depressive episode (been there, done that, that’s not what this is), just have a touch of the blues, I guess.

There’s probably a few different things contributing to it. Charlotte and I spent the weekend in Ottawa last weekend for a family reunion- it was something that I had been looking forward to for a long time, and it was even better than I had anticipated. Getting to see my Granny, and my aunts, uncles, and cousins was amazing. It was a lot of fun. And it was fantastic getting to spend some alone time with Charlotte- something I haven’t been able to do to that extent in a very long time. I also got to spend a lot of time with my sister and brother-in-law and my four nieces- we stayed in the same hotel, and it was wonderful. Charlotte and I made some fabulous memories, and I’m so glad we had the opportunity to make the trip.

Charlotte getting ready for the big party

Charlotte getting ready for the big party

The problem with having such a great weekend, though, is the letdown you feel when it’s over. For me, this letdown is always so intense. I feel despondent, certain that such a great time will never be had again. Once, when I was little, I had been having a great time visiting with my aunt, Barbara, while we were at my grandmother’s  house. Unfortunately, one day, Barbara had to leave to go back to her home as she had to work, and I was inconsolable. I cried and cried until I threw up. And while I may no longer exhibit that extreme physical reaction, my emotional response has not improved much since that time.

So that little post-holiday letdown has probably triggered this episode of the blues. It’s not helping that I didn’t get much sleep while we were away, and haven’t had a chance since we got home for much of a break yet. Penelope’s G-tube site became infected, so I had to get that taken care of, plus the stress of worrying about it means that a solid rest has not been in the cards for me this week. I guess I’m just at a bit of a loose end- wondering how things will turn out for Penelope, for me, for our family. I wish our plans to get away for a family vacation this summer hadn’t been scrapped, but since Penelope can’t travel for 6-8 weeks following the G-tube insertion, that’s how it has to be.

And of course there’s that one thing that always gets me down: I miss my mom. Some days, I just so badly want to talk to her, and it kills me that she’s not here. And what’s worse is the fact that she always knew when I was feeling down- she’d call me, and she would know, just by the sound of my voice when I said hello, that I was not myself. And that in itself, was always a comfort- she was the one person who always knew how I was feeling, without me having to say anything. And now she is gone.

And so now what? How do I shake off this funk and enjoy this summer that will be over all-too-soon? I guess if I knew how to do that, I wouldn’t be writing this post. Honestly, this wasn’t an easy post to write. I had to work up the motivation to write it, and I debated about sharing this, but this is what’s real; this is how I am feeling and I want this blog to be an accurate reflection of my life. I just want to feel like myself again- happy and able to focus on the positive- something I haven’t really been able to do this week.

Gotta get it together for these two monkeys

Gotta get it together for these two monkeys

The G-tube: Part Two

You can catch up on Part One here.

So, Penelope stayed in the PACU for about an hour. Once she was deemed ready, we were transferred up to the 7th floor, where she would stay until discharge. Upon our arrival on 7C, we were greeted by a nurse, who, as it turned out, wasn’t going to be Penelope’s nurse. She led us into the constant observation room, explaining that this was the only non-private room on the floor, but that the unit was full, so this is where we would have to stay for now. The room consisted of four patient beds, a patient bathroom, and a mini-nurses station. Penelope was assigned to the bed right beside the door.

This room was BUSY. People were coming and going constantly; phones ringing, babies crying, monitors beeping, etc. Luckily, Penelope was still pretty drowsy from the anesthetic and the morphine, so at this point, all the activity wasn’t bothering her. And I was just so relieved that everything had gone well that I didn’t care. There were only two cushioned chairs on the floor, both of which were in use, so I was given a regular plastic chair to sit in next to her crib, which I sank into happily, so relieved was I to have the surgery behind us.

Once we were all settled, Mark and my dad left the hospital, and I settled in to stay with Penelope. I had a book to read, and the hospital had wireless internet, so I could watch Netflix on my phone. The first couple hours passed comfortably enough. Penelope dozed on and off, and remained relaxed, despite the noise and all the tubes she had inserted. Her nurse checked on her frequently, and all was good. I had some dinner, and when I got back to the room, I started feeling pretty tired. I hadn’t slept much the night before, and it had been an emotionally draining day. Unfortunately, I was beginning to realize that sleep was probably not in the cards that night.

Penelope’s night nurse checked in with us after shift change and said that they had been hoping to get us moved into a private room by now, but that it likely wasn’t going to happen that night. She also mentioned that the mom of the baby in the bed beside Penelope’s doesn’t usually spend the night, so if she went home, I could have her pullout chair- the only one on the unit. I crossed my fingers that I could get my hands on that chair- without it, it was bound to be a long and uncomfortable night. That hard plastic chair which I had sat in, feeling so relieved earlier, was literally becoming a pain in the ass.

Around 8pm, the mom of the baby across from Penelope was heading home, and took pity on me and dragged her rocking chair across the room for me to sit in. I was grateful- though it wasn’t as comfortable as that coveted, cushioned, pull-out chair, it was still an improvement over my current seat.

Shortly after this exchange, another child was admitted to the room, and the noise level in the room increased correspondingly. Even though it was after 10pm, there was a steady stream of people coming in and out of the room, talking loudly, in addition to the monitors alarming and phones ringing. I was happy that Penelope was still quite drowsy from all the sedation she received earlier in the day- there’s no way she would have been able to sleep otherwise. Finally, around 11pm, the mom of the baby in the bed next to Penelope went home, and I laid claim to that pullout chair. Thanks to that chair, I was able to grab a bit of sleep, in about 20 minute increments, throughout the night. All in all, by the time Penelope had woken up for the day around 0430, I had slept for about 2-3 hours. So, not great, but better than not getting any sleep at all.

Wide awake, bright and early

Wide awake, bright and early

Penelope had woken up when the nurse came to check her vitals, and I could immediately tell that the sedating effects of the anesthesia and the morphine she had received had worn off. She was WIDE awake, and actually was pretty happy after she had a dose of Tylenol for pain. She was cooing and wiggling around, and I was so happy to see it. She was given a small amount of her formula through her new G-tube and she tolerated it well. This was a great sign.

Later in the morning, her nurse and I changed the dressing over her site, and it looked beautiful- no ugly redness or oozing. Another positive sign that she was recovering well. Her nurse also planned to take out the NG tube later that day, which I was really looking forward to. This NG tube that her surgeon had put in was much worse than the one she had at home- it was bigger, and she was having trouble swallowing with it in, and whoever had secured this tube to her face had inexplicably chosen to tape it right underneath her eye, and this offended both my mommy and my nursing sensibilities.

Seriously, who tapes an NG tube like that?

Seriously, who tapes an NG tube like that?

Around 0900, I felt that she was ready for a nap. I pulled the curtain around her crib to minimize distractions, and tried to get her settled. It didn’t work. Every time she fell asleep, something woke her up. A phone ringing, a monitor beeping, someone talking. As the day wore on and sleep continued to evade her, she went from mildly annoyed to cranky to enraged. I was told by the charge nurse that Penelope would get the next room that opened up, hopefully that afternoon.

Mark came by with Charlotte in the afternoon, and we switched roles. I  went home with Charlotte, feeling bad as I left him with an irritable Penelope. At least that awful NG tube was out by this time, so that was one less thing to bother her. Charlotte and I had a quiet afternoon and evening at home, and around 830pm, I heard from Mark that they had been moved to a private room. I was absolutely overjoyed to hear it. All afternoon, I had been worrying about how she and Mark would fare with another night in that busy room. After hearing that they had been moved, I was able to get a good night’s sleep.

When I returned to the hospital on Wednesday, I was rested and refreshed. Penelope’s IV had been taken out, so she finally had her hands free, for good now. She was fussy when I arrived, and it seemed that it was time for a feed. She was taking larger and larger volumes now at each feed. Once I had it going, she fell asleep. She slept through almost the entire feed, waking only towards the end. When it finished, I disconnected her and flushed the tube- and all hell broke loose. I don’t know if was just a coincidence or if the flushing of the tube triggered something in her digestive tract, but she proceeded to projectile vomit about 50 mL of her feed at the same time as an explosive stool made its way out of her diaper, and covered her dressing in poop. Thank god for call bells- I summoned her nurse, and we spent the next half hour cleaning the baby, the crib and changing her dressing.

After that, though, everything went pretty smoothly. I increased the volumes of her feeds more slowly to avoid another projectile vomiting incident, and after a far more restful night, we were discharged from the hospital by lunchtime on Thursday.

Happy to be at home

Happy to be at home

Since coming home, Penelope has continued to do well. She is SO happy to no longer have that NG tube and to have her hands free. She is full of big smiles, all day, every day. She has even had a bit of pureed food. She still gets fussy from time to time, we are still working on improving her feeding tolerance, and she still needs her dressing changed every day, but all in all, she is doing wonderfully. I want to thank everyone for all the well wishes and prayers that were sent our way for Penelope’s recovery. I’d also like to give a little shout-out to our friend, Amber, who owns a floral design business, serving the Durham region, called Wild Carrot Floral Design. She surprised us with a gorgeous bouquet of hydrangeas (which I love!) and chrysanthemums on Saturday, and I was bowled over by how beautiful the flowers were and how thoughtful it was of her to deliver them.

Beautiful flowers!

Beautiful flowers!

So that’s pretty much what to expect with a G-tube insertion. If you know anyone who is facing this procedure, or any other hospital stay with a little one, please share this post with them- the more you know about what to expect with something like this, the easier it is to handle. And I’m always happy to answer any questions or go into more detail if there’s something else you want to know.

We don’t know for how long Penelope will need the feeding tube. It could be months, years, or even forever. All I know right now is that she’s happy and she’s doing well. And that’s all that really matters.

So happy to see that messy face!

So happy to see that messy face!

The G-tube: Part One

On the Sunday evening before Penelope got her G-tube, I gave her a bath, and tucked her into bed, acutely aware that there were big changes ahead, and that this would be the last night of our current routine. I finished folding laundry, and packed up everything we would need for the following day. I set my alarm for 0430, and tried to get some sleep.

Of course, the alarm setting was completely unnecessary. I tossed and turned for a few hours, and slept in bits and pieces. At 0300, I was wide awake. At 0400, I gave up on getting any more rest, and got up for the day. I gave Penelope her last doses of medications, and set up her the last feed via the NG tube. I even gave her one last bath, knowing that she would only get sponge baths for the next two weeks. I dressed her in a simple onesie, and she was ready.

Some final sister cuddles before the big day

Some final sister cuddles before the big day

Now, complicating the proceedings that morning was the fact that this was Charlotte’s first morning at camp. We had signed her up awhile ago for a half-day sports camp for the month of July, and we would have to drop her off on the way to the hospital with Penelope. She needed to be at the camp at 0830, and we would need to be leaving the camp by 0915 to make it to the hospital by 1000. Should be plenty of time, right? I marvelled at how well that was going to work out! Mistake.

We decided that Mark would go into the building where the camp was being held with Charlotte, and I would stay in the car with Penelope. So I gave Charlotte a big hug and kiss, and off they went. Pretty much the moment the door closed behind them, Penelope started crying. I let her cry for a few minutes, hoping that she would just go back to sleep. Nope, that was not happening. Luckily, it had stopped pouring rain at that point, so I got out of the car, and took her out of the car seat and held her; swaying, bouncing, and jiggling, trying to soothe her. It sort of worked, eventually- the screaming dulled to a persistent whimper. By now, it was 0850, and I was starting to wonder what was taking so long. I could see Mark through the windows, walking down the hallway, and figured he was headed outside, so I strapped Penelope back into her carseat so we could leave as soon as he got to the car. That persistent whimper immediately turned into wailing. But, no big deal, she would fall asleep as soon as we got driving, which would be any moment now, since I assumed Mark was on his way outside. You have probably already guessed, but, no, he was not on his way outside. Once this became apparent to me, I texted him to find out what was going on. He replied with, “I have no idea. It’s crazy.”

Ugh. Penelope was really flipping out by then, so I got out of the car and into the driver’s seat and began driving in circles around the stadium parking lot. It worked like a charm- she stopped crying immediately and fell asleep. Clearly I should have been doing that for the previous twenty minutes. It’s now 0910. We need to leave soon to make it to the hospital on time. Mark finally emerges from the building, and I hop out so he can take over behind the wheel. We are finally on our way, but I am feeling unsettled by how chaotic the scene was at the camp drop-off. Now, in addition to my worries about Penelope, I was worrying about how Charlotte would fare that morning.

The drive to the hospital was uneventful, and we found parking and headed inside. We met my dad, who had come into the city to see Penelope through her surgery, and we headed up to the 7th floor to register. From here on out, things went smoothly. There were no issues with registration, and once that was settled, we went down to the IGT (Image Guided Therapy) department, where the procedure would take place. Penelope was starting to get fussy again at this point- she was hungry and tired, and she let us know it. The stroller became a vessel for pushing our belongings, as Penelope remained in my arms until the nurse came to take her away.

We were told the surgery would take about an hour, and it was recommended that we go have some lunch. I managed to eat a panini and a smoothie, without really tasting it- I just couldn’t concentrate on food until I knew Penelope was okay. Over this lunch break, I got word from Mark’s stepmom, Pam, aka Nana, that Charlotte had a wonderful morning at camp, playing with all her new friends. I felt so relieved at that- it was tough worrying about both girls, who were in different places and for different reasons. There was one stressor crossed off the list.

My happy camper!

My happy camper!

After we had eaten, we headed back to the OR waiting room to hear about Penelope. About ten minutes after we got back there, the surgeon appeared, and summoned us into a little room. He told us that everything had gone well- the G-tube was in place, and the team in recovery was waking her up. Once she was awake, we would be able to see her.

It took around another half hour or so before we were told they were ready for us to see her in the PACU (post-anesthesia care unit). We were led through some hallways and doors, and then brought to her bedside. My sweet angel was okay. She was very drowsy, laying in a crib. She had an IV in her hand and a new NG tube that would serve as drainage for the next 24 hours. As we came to her, she starting crying and whimpering. I could tell she was in some pain. The nurse gave her another dose of morphine, and the crying stopped. That would be the last dose of morphine she would need. She drifted in and out of consciousness for the next hour. I stayed by her side, holding her little hand. I knew the next few days would be difficult, but I was so relieved that surgery was over and that she was doing well.

Her sleepy little face after the surgery

Her sleepy little face after the surgery

You can read part two of this story here– this is turning into too long of an entry to put it all in one post. Thank you to everyone for all the support we have received through this tough time. I’ve said it before, and I will say it again- we are so lucky to have such wonderful family and friends.

Home

We are home. Everything went very well for Penelope this week. The G-tube was inserted on Monday. The NG tube came out on Tuesday. And we were discharged home on Thursday. She is recovering amazingly well. I will post a more detailed update about how it all went next week. For now, I am just cherishing the fact that we are home, and that the NG tube is gone. I knew that the NG tube stressed me out- always checking to make sure it was in the right place, re-taping it, replacing it when she pulled it out, etc, but I didn’t realize what a burden it was until it was gone. A huge weight has been lifted, and I just feel lighter and happier now, and I think Penelope does, too.

My beautiful baby!

My beautiful baby!

Big Day

Well, it’s finally here. Penelope will get her G tube today. It is 4:23am as I’m writing this. I had set my alarm for 4:30am but of course I didn’t need it. What little restless sleep I did get was interrupted by the thunderstorm that is currently happening here, so I was wide awake at 4am anyway. I’ve given her the last dose of medication and soon I will start her last feed. And then, in a few hours, we will head to the hospital. I am a bundle of nerves right now- I just want this over with.

I will post with an update on how it went when I can- I’m not sure when that will be. In the meantime, here is one last picture of Penelope with the NG tube for your viewing pleasure:

Can't wait to see that beautiful face without that hideous tube attached

Can’t wait to see that beautiful face without that hideous tube attached