Then and Now.

We've been a busy bunch around here, so this post has been in the works for a couple of weeks.

Last year on Fathers Day Rafael received a hand made card from Max. Okay, maybe not really from Max. Kids from a local elementary school had volunteered their creative skills and made Father's Day cards from the NICU babies to their dads. It was very sweet. Inside the card the nurses included Max's foot and hand prints taken soon after he was born. Some of the foot prints had been made into magnets that now live on our fridge. They're tiny. We pulled one of the magnets off of the fridge on Father's Day of this year and marveled at how gigantic Max had become. We decided to make new prints of his hands and feet so we could frame them together and have a wonderful keepsake. While I was at it I decided to snap some photos of other tiny mementos with their now giant counterparts. Our peanut is a giant!

Yes...that is a penny for scale!

When Max was born we could have fit two of him into that tiny onesie. The tag says 3-5 lbs. He was nearly 2 months old before he fit into it.

That little white rectangle was Max's very first diaper (okay, not *the* actual diaper). When he was born it hung down to his knees.

That little blue and white dog hung out in Max's NICU crib for months. That's about how big he was when he was born - although not quite so fluffy. 

And the fifth installment in the "Max grows" saga. 

Rafael's Birthday - version 2.0.

Since Max's arrival a year ago, it seems as though June will be both a busy and reminiscent month for us.

32 years ago today (sorry, dear) Rafael was welcomed into this world on his mother's birthday. I guess Max just thought he'd be a great present for Dad's big day (although a little early). Our world was very different just a year ago, and looking back at the "Rafael's Birthday" post from last year, I am reminded just how far we've come and just how much we've grown and been strengthened by our journey together as a family.

Last year the span between Rafael's birthday on the 15th and Father's Day on the 20th was the most nerve racking, white-knuckled, gut wrenching time time we would spend in our 6 month roller coaster ride in the NICU.

We were given the news on Rafael's birthday that Max would be having the PDA ligation that had been discussed as plan B should the medication intended to close the PDA (patent ductus arteriosus) not work. It was pretty terrible news to get on your birthday. Finding out that your 11 day old micro preemie was about to have heart surgery wouldn't have been a treat on a good day of course.

I held Max for the very first time the day before - 10 days after he was born. In retrospect, I realize that the nurse, hearing of the possible surgery, insisted on getting Max out for his first cuddle for good reason. We just didn't know what the outcome of that surgery might be. It pains my heart to think of that now. I am grateful to have been blissfully unaware of what that week would bring. The PDA ligation is the most common surgery performed on preemies and the NICU staff were all very reassuring and confident. Outcomes were promising and babies usually did very well once recovered from surgery. Once the heart is fixed, the lungs can follow. We were looking forward to getting things rolling and getting him fixed up if that's what was necessary.

Surgery was performed two days later. We sat in an empty room in the NICU, staring at the clock. I don't remember what we talked about while we waited, if we talked at all. When we were finally able to see Max - splayed out on his belly, drugged into a still sleep, stable - we exhaled a sigh of relief. We stayed for awhile, staring at his tiny body, and eventually left to let him rest and recuperate, and for us to do the same. We returned later that evening and Max was doing well. His x-ray even showed a small improvement in his lungs. We were hopeful.

The next day, our visit to the NICU was met with much different news. Max's blood pressure had plummeted, he was in a critical post-operative state and was flirting with renal failure. He had six med pumps hooked up and flowing into his tiny veins to try to stabilize his blood pressure, control his pain, and deliver him liquids and nutrients. Rafael managed to muster the question I was too afraid to ask. The doctors weren't able to tell us if we'd get to bring our baby home. We were scared. I remember going home that night and laying in bed, unable to sleep. We both lay there in silence, getting up every two hours to call the NICU. I remember breaking down and sobbing in the shower, and the deep, guttural pain of not knowing. I don't remember much else.

The next few days were a slow climb out of a dark hole. Max, as he continued to do, mustered more strength than we both had combined and rallied on. His blood pressure stabilized, his kidneys started working again, and his lungs slowly cleared. But, you know how the story goes.

We've both been marveling lately at the difference a year makes and how grateful we are to have Max in our lives. We love being a family and watching Max grow, and change and become this wonderful little person that astounds us with his strength, joy, and boundless love. Max was certainly a wonderful birthday present for Rafael, but I'm sure the celebration this year was much sweeter.

As I sit here listening to Max breathing on the other side of the baby monitor, Rafael is out enjoying a celebratory drink - exactly how one should be spending their birthday. To my wonderful husband, and the fantastic father of our beautiful boy - Happy Birthday.

Top heavy.

If Max had been born on his due date, he would be 9 months old today. But never mind that - yesterday was an even more important day! Yesterday, five days after Max's first birthday, marked the day that we've spent more days at home than we did in the hospital. I think we were just as excited to clock that milestone as we were for Max's birthday. I was always sad that Max spent more time growing in the hospital than he spent growing inside of me - but now he's been home even longer than that, and it's an awesome feeling to have trumped the NICU time.

We had a whole bunch of appointments on Monday to ring in Max's new year. We started the morning with an audiology appointment, where we learned that Max really does not like things in his ears. I don't think I can state that strongly enough. Max lost interest in the televisions, lights, and puppets paired with sounds before the audiologist  could get an accurate picture of Max's hearing so she had to use the computer and ear piece to get a manual reading on his hearing. It was not well received. Max needed to stay relatively still and quiet during this process. We managed to calm him enough with bubbles to get a reading on one ear, but he protested so much that we have to return for a second appointment to get a reading on the other ear. Max is not a fussy kid, but he was having none of it. He screamed and sobbed the minute the little ear piece went in. We have no concerns about his hearing, but the audiologist can't give her official 'sign off' until she gets the reading. Ah well.

Next we met with the occupational therapist. We discussed some of our concerns (or observations, really) about Max's gross motor skills. While he is making progress toward milestones like sitting and crawling, we're hoping to help him catch up a little bit. To aid in these goals we're going to have our first visit with the physical therapist to see if there are some things we can do at home to help Max practice these skills (other than the obvious). Max is doing great with his fine motor skills - things like clapping, feeding himself with a spoon, banging objects together, taking objects out of containers, etc.

Thankfully they saved the vaccinations for last, as Max was in no mood for funny business by the time we made it to the end of our morning. Max was weighed and measured and is now 14lbs 9oz and 25.5 inches. His head circumference has made it onto the bottom of the 12 month charts, while the rest of him is still on the bottom of the 6 month charts - no wonder he's having trouble sitting, the poor kid is terribly top heavy!  Max was given a once over, given a poke in the arm and one in the leg, and we were on our way.

Because our doctor appointments were at the same hospital where Max spent the first several months of his life, we decided to take a swing upstairs to drop off some photos and visit the NICU staff. We were thrilled that the receptionist working the door had to strain her memory to remember us. I've never been so happy to have been forgotten. Some nurses and doctors came out and ohhed and ahhed at how big Max had gotten and chatted for a few minutes before we had both had our fill of being there. We both walked out with a bit of an odd feeling in the pit of our stomachs. It was nice to visit the people who took such good care of Max, but just being there stirred up so many feelings that we didn't care to revisit. Spending day in and day out in a place you have such a love/hate relationship with will do that I guess. Either way, it was nice to leave some photos for the 'NICU Stars' wall.

We're working on getting some photos together from Max's birthday celebration, so stay tuned for that!

Happy Birthday.

Happy Birthday to our Mighty Maximilian. We are so proud. You are so loved.

(more to come)

Mixed memories.

One year ago today, at roughly this hour, I was experiencing what I hadn't yet learned were contractions. I was 25 weeks and 5 days pregnant. We had had a busy week, it was fair to assume that my back was just sore and there wasn't anything to worry about.

The last picture of Max on the inside - 25 weeks

We had spent the previous week feverishly packing to move into our new apartment that we were approved for only days before the move in date. We spent all weekend finishing up our packing and all day Monday moving. On Tuesday I walked at my graduation with my B.Ed. On Wednesday we spent the morning cleaning our old apartment and I spent the afternoon at work. I went home feeling tired, but not out of the ordinary. I tried to soak away my sore back in the bath to no avail. Rafael was due to work until 1 am that night, but ended up getting off several hours early. Once I was curled in a ball on the couch we decided to call Health Links and talk to a nurse to see if there was any cause for concern. I really didn't want to be the paranoid pregnant lady showing up at the ER with braxton hicks. The nurse on the phone told us to get to the hospital so I could get checked out. I very sincerely expected to be home a few hours later and just told to take it easy for a few days. When I was told I was in pre-term labour, I was in shock. The sudden flurry of activity around me was overwhelming. People came and did their tests, gave medications, ordered ultrasounds, and came and told us just what to expect with a baby born at this gestation. It was a lot to take in. We were both shell shocked.

When the tests came back that told us that our baby would be born sometime in the next 2 weeks the gravity of the situation really took hold. Roughly 28 hours after I was admitted, Maximilian was born via emergency c-section at 2:46 am, just barely making it to 26 weeks gestation. He let out the tiniest squeak that broke the silence in the room. The team of doctors and nurses spent 15 minutes resuscitating him. We both held our breath until, what must have been an hour later when we were given an update and told that our baby was both stable, and a boy. We had no idea what the next 6 months held in store.

It's difficult for one day to be both the best and worst day of your life. I suddenly felt powerless to protect the one person that I was meant to keep safe. I felt like my body had failed me and him. I felt pretty short changed by the whole pregnancy and birth experience. I had looked forward to pregnancy for some time and I loved being pregnant. I cried many, "it's not fair" tears and mourned for the experience I had expected to have. I spent too much time playing the "what if" game - what if I hadn't worked so hard that week, what if I went to the hospital sooner, what if I could have held out long enough to get the second dose of steroids, what if I could have done something different. We were never given a reason for my pre-term labour, so I'll likely never have those answers.

I still have a lot of mixed feelings about what was meant to be the happiest day of my life. I still daydream about what it might have been like to have a 'normal' birth experience, to be filled with excitement and awe at seeing my baby for the first time, holding him to my chest, crying tears of joy and happiness. I've mostly come to terms with Max's birth story and instead choose to focus on the amazing triumph of the human spirit that is his life story. This year has been, without a doubt, the most eventful, roller coaster ride of my life. I'd definitely never choose to do it again, but the experience has shaped us as a family and I'm immensely proud of all we've been through together.

One day we'll have a heckuva story to tell Max.

Keep on keepin' on.

It's been awhile since we've had a real update around here. Now that we've broken out into the world we've been keeping ourselves fairly busy. It feels so blissfully normal. We visit with friends, go grocery shopping, run errands, stroll around the neighbourhood, pop into shops, and feed our coffee addiction all with Max in tow. Sure, we still have to plan around his meal times, but now that he's eating more, faster, and less frequently it's easier to do.

Hitching a ride with Dad.

Reflux was always a big hurdle in getting us all out the door. Max would take an hour (at least) to eat, and then remain upright for 30 minutes, and often snooze afterward. By the time he was up we didn't have much time before he needed to eat again. Now that he's older and we've introduced a blended meal in place of a liquid meal he's only taking 4 feeds of milk during the day. He's taking more volume over a shorter period of time now, and doesn't need to remain upright for quite so long - which is fantastic. In fact we've done away with his reflux meds entirely. We've long suspected that they didn't work very well for him so we did a trial run without the meds and didn't notice a difference at all. That was about a month ago and his reflux has been getting better and better since. We've even charted a few spit-up-less days - something I couldn't have imagined a few months ago. We're still changing our clothes from time to time, but it's encouraging to see progress.

Max seems to be growing steadily, although we haven't had a medical appointment in well over a month to tell us just how much he's been growing. He's gaining some new folds, growing out of clothes and my back tells me he's getting heavier. While we can't weigh him ourselves, we have pulled out the measuring tape and he's officially made it to twice his birth length!  Our next doctor appointment is coming up next week so we'll know for sure how much he weighs then.

Max is head over heels about the cats.

We're looking forward to getting some feedback about his developmental progress as well. He's beginning to fall a little behind in gross motor skills, or least he's on the late side of normal (in my completely unprofessional opinion), but it's nothing I'm particularly worried about. He seems to be doing everything on his own time. I think Max is doing well for a baby who was born 3 months early and spent 6 months in the hospital. He lost out on some prime developmental time during those last 3 months in a hospital bed. Add to that the lost tummy time from his g-tube surgery, and his outright refusal to sit as it aggravated his reflux, and you're bound to get a little behind. He is clearly showing progress, however. He's finally starting to be willing to stay in a seated position and generally only topples over when he tries to reach for something or look behind him.  He's actually enjoying being on his tummy, as he can push up through his arms - although he thinks it more fun to roll over than it is to attempt crawling. He did break out some army crawling skills one day, but I think he'll need to master sitting before he'll get to the crawling game with any real commitment. He is getting pretty good at turning himself in circles though - I often find him nearly upside down after leaving him to play in his crib for a few minutes. Max is talking up a storm and amuses us with his made up and accidental real words (oats, boat, abba, daaaaaa - so close to dad!) His current new trick is blowing raspberries and clapping. He's working on 4 top teeth so we're often wading through puddles of drool and trying to keep our fingers away from Max's mouth. The top middle teeth are nearly out and Max is chewing on anything that comes near his mouth. Yes - even food.

Meal time - a messy affair.

I've mostly abandoned trying to feed Max. This isn't to say he isn't being offered food. He just seems to have inherited an "I can do it myself" attitude and really prefers to feed himself. So, I load up the spoon and let him have at it. Sure, it ends up all over his face, often in his hair, sometimes in his eyes, but it does with increasing accuracy land in his mouth. I'm not sure that he really understands that he's eating - his goal seems to be soothing his gums on the soft spoon - but food is going in his mouth, he's tasting it and he's swallowing it. Eventually he's bound to put two and two together. Today for the very first time I put the spoon in his mouth and he closed his mouth around it to take off the food. That may not seem like a big deal, but the roof of his mouth has remained fairly sensitive for him and he would almost always gag and throw up when food got stuck there. For him to take food to the roof of his mouth, move the food around his mouth, and swallow it - well, that's a big deal. It's all progress in the right direction.

Life seems pretty great these days. We're coming up on Max's first birthday and we're wondering where the year went. Nearly a week after Max's birthday we'll finally have been home longer than we were in the hospital. So much of this year has seemed a blur, and other moments stood still for what felt like an eternity. Our lives have been changed forever and enriched in ways that Max will never know. We're very much looking forward to celebrating a monumental year with our Mighty Maximilian.

A lesson in Motherhood.

A year ago I was anxiously awaiting the arrival of the little bean growing inside me. I couldn't wait to be a Mum. Apparently that bean was listening. Little did I know that less than a month later I would be thrust into motherhood three months earlier than expected. When I said I couldn't wait, that wasn't exactly what I meant!

Those first several months of motherhood were not what I had in mind. I knew being a parent wouldn't always be easy and I was certain to face some challenges - but I had no idea what was in store for me. The last 11 months have taught me more than I had learned the 29 years prior. Being Max's Mum has taught me more than just what it means to be a parent.

I've learned how to be patient - really, truly patient. I've learned to accept that you just can't control everything. I've learned to find joy in the little things. I've learned that I'm a lot stronger than I thought I was. I've learned that I'm a lot more fragile than I'd like to admit. I've learned that I have a breaking point. I've learned that I can push myself so much further than I thought possible. I've learned that I can't do it all. I've learned how to smile so much that it hurts. I've learned the real meaning of stress and exhaustion. I've learned to be truly thankful for all that I have. I've learned what it feels like to be willing to do anything for someone you love. I've learned that my marriage really can withstand anything. Most importantly, I've learned the meaning of unwavering, undying, unconditional love.  

So, to Max - thank you for making me the mother and person that I am today.