The Waiting Game

If you ever need to avail yourself of our health care system, you better be prepared to wait. Wait for an appointment, wait to see the doctor, wait for test results. You will spend a lot of time waiting.

I have found myself once again waiting for the phone to ring. This time, I am waiting to hear when Penelope’s G-tube insertion will be performed. For those of you who are unfamiliar with a G-tube, it is a feeding tube that is surgically inserted into the stomach, as opposed to the NG (nasogastric) tube she has now, which is inserted through the nose, down the esophagus, and into the stomach. The NG tube is temporary- anyone with ongoing feeding issues should get a G-tube. Having a G-tube will allow Penelope to have her hands free- something she really needs to maximize her development. It could also help to reduce her reflux and regurgitation issues- with the NG tube, the stomach is never fully closed off from the esophagus, which can allow for increasing episodes of reflux and vomiting. At any rate, the G-tube will improve her quality of life- can you imagine how irritating it must be to have a tube taped to your face and inserted through your nose into your stomach? So needless to say, I am anxious for her to have this done.

It’s been almost four weeks now since we were seen in the G-tube clinic. I was told Penelope was a perfect candidate for the procedure, and that we would hear within 1-2 weeks as to when it would take place. I was told that there was a 3-month wait for it to be done- I wasn’t happy about that, but at least we were on the road to getting the G-tube. And now here I am, close to four weeks after that appointment, and I do not have a date for the procedure.

There are a couple things compounding my frustration. One is the fact that this is not the first time I have had to wait for a procedure to be scheduled. (If you are new to my blog, you can read about that here). Waiting to get that MRI done was incredibly frustrating. I don’t think I can adequately convey just how tortuous that time was for me. Everyday, waiting for the phone to ring. Worrying about what the results would be. Telling myself, every day, that I shouldn’t be so anxious, that the MRI results would be normal, and everything was going to be okay, but never really being able to convince myself of this. It was awful.

The second thing bothering me is that if Penelope’s swallowing problem had been detected earlier, she would probably already have a G-tube. Now, logically, I know that a baby aspirating during breastfeeding is not a common finding, and so it is understandable that it was not picked up right away. In reality, though, it is upsetting to think that I wouldn’t still be waiting, that Penelope could be getting on with her life, and that maybe her skills would be further along than they are now. And so my patience is wearing thin.

I lodged a complaint today with the hospital over how long it is taking to get the procedure scheduled. I’m done waiting. It is unfathomable to me that a family should be told that they will hear with 1-2 weeks about a procedure date, and then almost a month later, there is still no date set. It is cruel, and unnecessary. I don’t know if this complaint will result in anything getting scheduled. I do know that our pediatrician will back me up and will recommend that she gets it done as soon as possible. And at least I feel like I’m doing something.

Unfortunately, I don’t think this will be our last time waiting for something in the health care industry. But at least, right now, I have this face to comfort me while I wait:

20140528-205322.jpg

 

UPDATE: The squeaky wheel gets the grease. We now have a date for Penelope’s G-tube insertion and we are on the cancellation list. The date we have been given is at the beginning of July, so even if there is no cancellation slot, it’s still not too far away. I’m very happy and relieved to finally have this date.

Advertisements

Maternity Leave

My maternity leave is due to expire in July. I cannot believe how quickly this year has gone by. I remember my last day of work vividly- filled with anticipation about the baby coming, happy to have some alone time with Charlotte before her sibling would arrive, as well as some sadness to leave my jobs behind for a whole year. I knew I would miss the work and miss my colleagues, but I also sensed how quickly the time would go and knew that I would be facing my return in what would feel like a heartbeat.

To say that my maternity leave has not gone as planned would be an understatement. It was a little over a year ago when I was putting plans in place for my leave. I decided to stop working when I would be about 35 weeks along- Charlotte came along unexpectedly at 36 weeks, and I wanted to be prepared in case this baby decided to make a similar entrance. I was hoping to go longer than 36 weeks, as it would give me a much-needed break before the baby came. We had planned to keep Charlotte in daycare for 4 mornings per week- Kathy, her daycare provider, was a wonderful caregiver, and Charlotte had friends there and had really flourished under her care. This would give me time alone with the baby, time with both kids, and time alone to rest and prepare before the baby came. Tragically, only days before I was due to go on leave, Kathy had to close her daycare due to a cancer diagnosis, and she passed away only a few months later. This was a terrible loss. Kathy often reminded me of my mom, and we really miss her. Obviously, though of a great deal less importance than this tragedy, this required a last-minute change of plans for our daycare arrangements.

Fortunately, my in-laws have always been very helpful in supplementing our childcare needs. They offered to take Charlotte off my hands whenever I needed them, and I happily took them up on their offer. We also decided to enroll Charlotte in nursery school in September, which certainly proved to be a good decision.

In July, however, I had finished work, was heavily pregnant, and still needed to entertain and care for an active three year old. The very first day of my maternity leave was a hot and sunny one. I decided to take Charlotte out to the park. I envisioned a happy morning, watching her play on the slide and run around the playground, followed perhaps by going out for lunch. I started getting Charlotte ready, the first step being the application of sunscreen, what with it being such a scorching day. She of course wanted to do it herself, and I complied- big mistake. Almost immediately, she rubbed her sunscreen covered hands over her eyes, and soon was howling in pain. I did everything I could to make it better- splashed water into her eyes, washed her face and hands to prevent any further damage, but she was just too far gone. I convinced her (and myself) that we should still go to the park, and off we went, Charlotte with her red, swollen eyes, crying the whole way in the stroller, refusing to get out and play at the park, and eventually crying herself to sleep on our way home, and me, fighting back my own tears of frustration and feeling entirely inadequate.

A more successful day at the park

A more successful day at the park

On day two, we got a little further into the day before disaster struck. We actually made it to the park, where she happily ran around and played, and then I brought out the bubbles. Charlotte was ecstatic- she loves bubbles, and so we played with the bubbles for awhile before she went back to running around the playground. Now, there were a lot of kids around, and I’m still fuzzy on the details, but somehow, unbeknownst to me, the bubbles spilled on my phone. I didn’t realize this had happened until we got home and I tried to use my phone and it wouldn’t work. The screen simply glowed blankly, and I could see the unmistakable sheen of bubble solution trapped underneath. I’m guessing that some bubbles must have spilled or dripped onto the phone at the park, seeped into the phone and under the screen, and, since it was such a hot day, dried on the outside so that I didn’t notice anything was amiss when I packed it away with the rest of our things upon our departure.

So, two days into my maternity leave, and I had traumatized Charlotte with sunscreen and needed a new phone. Not exactly a rousing success. In fact, I was wishing I was still at work, and dealing with simple problems like infiltrating IVs or having to redo blood work because the sample clotted. Those problems have solutions, whereas I was feeling increasingly overwhelmed and apprehensive about how I would handle caring for a newborn and Charlotte.

Things did get better, at least for awhile. My in-laws would take Charlotte for the day at least a couple times a week, and the baby waited until Mark was finished teaching summer school to arrive. That was pretty much the best timing possible- it meant that Mark could do all of Charlotte’s care for the month of August and I could focus on the baby. And then Charlotte started nursery school in September, which provided me with some relief from the chaos of caring for an infant and a three year old on about three hours of broken sleep. And then, of course, things got a bit crazy around the end of September, which you can read about here.

And so here I am- not where I thought I would be a year ago. Given everything that has happened, and what Penelope’s current needs are, Mark and I have decided that I will take an extended leave to stay home with her for now. This was not an easy decision to come to- I truly love being a nurse, and I worked hard to get to where I am. And to be honest, I haven’t exactly felt like a smashing success as a stay-at-home mom. But Penelope’s needs, our family’s needs, have to come first right now. And really, even if the laundry isn’t done and dinner is a frozen pizza (again), as long as Penelope continues to thrive and improve and Charlotte continues to be the sweet, smart, thoughtful girl she is- there is no other accomplishment that could mean so much.

My two greatest achievements

My two greatest achievements

Happy Nurse’s Week!

In honour of this week of appreciation for the greatest profession in the world (not that I’m biased or anything), I am dedicating this post to nurses everywhere, and in particular, to the very special group of nurses with whom I work.

When Penelope was hospitalized in March for the insertion of her NG tube, there were no beds available for her at Sick Kids. Some calls were made, and as luck would have it, the pediatric unit at my hospital, the unit where I work, was able to admit her. Those eight days we were in the hospital were not easy, but they were made better by the wonderful group of nurses who looked after us.

To Zuzana, who upon our arrival and admission, made us tea and offered comfort right away- thank you. You immediately saw how tired and overwhelmed I was, and I am so appreciative of your care of Penelope and your efforts to help me.

To Heather B., who was our nurse that first night- thank you for doing the overnight feeds so that I could (attempt) sleep.

To Zoe, who took time to sit with me and and talk and hold Penelope, even though I’m sure she had a busy patient load- thank you for providing me with a sympathetic ear and hugs when I really needed them.

To Donna Jayne, who listened to me and laughed with me- thank you for brightening our stay with your presence.

To Lisa G., who cuddled Penelope and helped me as we struggled with the malfunctioning feeding pump all night long- thank you for laughing with me at a frustrating situation, crying with me as I struggled with what my baby is going through, and for being a great friend.

To Teresa, who knew what it felt like to be on the other side of the nursing station- thank you for empathizing with me.

To Heather S., for always listening to me and providing hugs when I needed them- thank you.

To Donna E., for your amazing skill at securing the NG tube- thank you for teaching me that Tegaderm on top of Duoderm is the way to go.

To Lisa C., who took the time to find a baby tub and helped me to bathe Penelope when I couldn’t stand the smell anymore- thank you for your loving care of my baby.

To Carolyn, who listened to my concerns about Penelope’s stool and advocated for us- thank you for taking me seriously and making sure that others did too.

To Kendra, whose continuous words of encouragement and support have lifted me up when I’ve felt down- thank you.

To Alyssa, who listened to me about my anxieties over Penelope’s health before we even knew there was something wrong- thank you for never making me feel like I was overreacting, thank you for all the help, support and advice you have provided me since Penelope was born, and thank you for being a great friend. You are going to be an amazing nurse practitioner in a few months.

To all of the nurses on the unit- the work you do is so important, and you all do a great job. You treated us so well, and I know it’s not just because you know me- that is how you treat all the patients and their families.

To all of the nurses I know and have encountered in my life- thank you. You are amazing, the work you do is amazing, and I appreciate all that you have done for me, for my family, and for all your patients.

Nurses everywhere provide invaluable care, support, knowledge, and skill to patients and their families. They work through mealtimes and go without bathroom breaks to care for their patients. They miss holidays and family gatherings to be with patients in their time of need. And they often go without the thanks and recognition they deserve for they service they provide. This Nurse’s Week, tell a nurse you know how much they are appreciated. It will mean a lot, and they truly deserve it.

Thank you, nurses, for taking great care of Penelope!

Thank you, nurses, for taking great care of Penelope!

Mother’s Day

Mother’s Day is coming up. I have two beautiful daughters to celebrate with this year. It should be a happy, relaxing day. But for me, it is bittersweet. On March 7, 2011, I lost my mom. She was only 57. And Mother’s Day, like every other holiday and special occasion, has not been the same since.

It is almost like with her death, a ceiling was created on how much happiness I could feel. No matter how joyous an occasion, I always know that I’m not enjoying it as much as I would with Mom here. These special occasions- birthdays, Christmas, Mother’s Day, etc- almost make me feel like I’m bipolar. One minute, I will be caught up in the excitement of seeing Charlotte open up her presents on Christmas morning, my heart almost bursting with happiness, and the next, I’m fighting back tears because my mom is missing it.

She has missed so much. Charlotte’s first steps, and words, and seeing her personality blossom into the smart, sweet, funny little girl she is now. She missed my graduation from nursing school- I know how proud she would have been, and how much she wanted to be there, and it haunts me that she didn’t make it. She missed the birth of three grandchildren, including the birth of my baby girl, Penelope. She would have loved being the grandmother to her six granddaughters. I acutely feel that loss at family gatherings.

Fortunately, I have many happy memories of the moments my mom was here for. She loved being the Mother of the Bride at my wedding and at my sister’s wedding. She was ecstatic with the births of her first three grandchildren- my two nieces, and my daughter, Charlotte. She saw my sister graduate from medical school. And she was here when I finally figured out what I wanted to do with my life, even if she didn’t make it to my graduation.

And then there are all the moments she was there for as we were growing up: dance classes and recitals, Brownies, pizza lunches and craft days at school, class trips- she was there for them all. Every week at our softball games, she would sit in her lawn chair with her knitting or her needlepoint or whatever other project she was working on at the moment. It would have been so much easier for her to stay at home and do those things, but she never did. She was always there, and that describes her perfectly- always there.

There for the good times, and the bad times too. She saw me through illness, disappointment, heartbreak, through all the mistakes I made over the years, always with a gentle spirit, ready to forgive and help and support me no matter what. She was truly the embodiment of unconditional love. She is my role model, and I hope to be the kind of mom to my girls that she was to my sister and I. There are days when I desperately wish she was still here so I could simply ask her, “How did you do it?” Our house was always impeccably clean, with homemade dinners every night, and she made it seem so easy. I struggle with finding the time and motivation to keep even a semi-clean house, and, well, let’s not even talk about my cooking.

My mom’s legacy to me is one of love. I miss her every day, and I know that will never go away. This Mother’s Day, and every day, I am going to try to break through that ceiling and to be as happy as I know Mom would have wanted me to be. It is the one gift I can still give to her.

228083_10150559615145511_1794585_n

Happy Mother’s Day, Mom. I love you.

Instincts

When Charlotte was born, I was amazed at how instinctual her behavior was. Before she came along, I worried about how I would teach her things. How will I teach her to eat? How will she know what to do? I thought about it all the time. I was reassured by people that she would just know what to do, but I didn’t really believe them- it seemed impossible to me. And yet, that is exactly what happened. Okay, sure, there were a few bumps in the road with breastfeeding at the start, but her instincts (and mine) took over, and we figured out how to make it work together. I was constantly in awe of how this little baby somehow just knew that we were her parents and she trusted us to take care of her. All the things I had worried about teaching her- eating, crawling, walking, talking, and even toilet training- happened much more naturally that I had thought possible. It became crystal clear to me that human beings are born with instincts on how to survive and grow.

What happens to those instincts as we get older? My instincts are still present, but I now possess the ability to doubt myself, and I constantly silence my instincts. At home, at work, everywhere- I just can’t seem to trust myself anymore. Working as a nurse, I might have a feeling about what was wrong with a patient, but I often lacked the confidence to voice those feelings, especially as a newly practicing nurse. When Penelope was born, I immediately felt that things were not right with her, but for months, I let others convince me that everything was fine. And of course, as it turns out, I was right. Just yesterday, I had to replace Penelope’s NG tube when it got pulled out, and when I was checking the placement of the tube, I felt that something was not right, but I still wasn’t confident in my instincts. Luckily, my aunt, who is a nurse and who knows me very well, could tell that I was unsure about the placement of the tube, and helped me figure it out. We pulled out the tube again, and saw that the end had coiled back on itself- so once again, my instincts were bang-on, and yet I doubted myself.

A rare photo of Penelope without the tube after it came out yesterday

A rare photo of Penelope without the tube after it came out yesterday

Am I alone in this? How do people silence their doubts and tune out the negative voices to really trust themselves? What will it take for me to be able to do this?

One thing I know for sure- when I return to work, I will strive to always take a parent’s instincts about what is happening with their child very seriously. I will strive to never dismiss it as the ramblings of an overly anxious parent, the way in which I was dismissed.

I hope that I can overcome this self-doubt that has plagued me. I hope I can gain the confidence to trust my instincts again. I hope I can find a way to do this.

Crystal Ball

Sometimes, I think back to where I was a year ago. I was working as a nurse, splitting my time between genetics and pediatrics, in positions that I loved. I was pregnant, with my belly getting bigger every day, feeling that baby squirm around all the time. I was so excited to find out if Charlotte was going to have a sister or a brother. Charlotte asked me every day about when the baby would arrive, and suggested names like “Baby Doll Carrot” for her sibling. I was filled with so much joy and anticipation. I was also experiencing a fair amount of anxiety about what the future would hold. I was worried about how I would manage caring for a newborn and an active preschooler. I wondered how Charlotte would feel with our attention being divided between her and the baby- I didn’t want her to feel left out or neglected. I think back about all of this, and I wonder, what if I’d had a crystal ball?

Baby belly, just a few days before delivery

Baby belly, just a few days before delivery

What if I had known what was in store for us? I wouldn’t have wasted any time worrying about how Charlotte would handle having a baby in the house. She walked into the hospital room to meet her baby sister with a huge, wondrous smile on her face, and there hasn’t been a moment of jealousy on her part. She has always been understanding of Penelope needing my attention, and even when the doctor’s appointments starting taking over our lives, she never reacted badly. Charlotte adjusted so easily and completely to Penelope, I still can’t quite believe it.

In love with her baby sister, right from the start

In love with her baby sister, right from the start

I wouldn’t have worried so much about how we would handle doubling the number of kids in the house. Somehow, we managed, and there have certainly been times when I have wanted to run screaming from the house (like yesterday, when Charlotte was suffering from a case of cabin fever and Penelope covered me head to toe in vomit and stool) but it hasn’t been as difficult to juggle the two girls as I had feared.

If I’d had that crystal ball, I would have spent all my time worrying about my unborn baby. All that joy and anticipation I experienced would have been lost. I suppose we might be a few months ahead in the diagnostic and medical intervention process, but I think we would pay too steep a price for a negligible benefit.

Nine months ago, our beautiful baby girl came into our lives. It has been a roller coaster of love, laughter, heartbreak, and acceptance. I’m still not at the point in this process where I can say I am no longer angry with how things have turned out- but I’m closer than I was even a month ago. Progress.

Then and now

Then and now