Happy Birthday, Babies!

A whole year has gone by. 

I'm still in shock at this realization.

One year ago today saw the beginning and the end of a lot of things.  One year ago brought us some harsh realities, packaged up into two bundles of joy.

Last year, my twins were born six weeks early.  Wyatt first, then his sister Zoe a few minutes later.  Wyatt weighed in at 4 lbs, 13oz, while Zoe was much smaller at 4lbs, 1oz.  Both had oodles of dark hair and the gossamer skin of prematurity.  Both had bright blue eyes.  You could tell right away that Zoe was going to be the spitting image of me.  To the medical staff at least, you could tell right away that Wyatt had Trisomy 21 or Down Syndrome. 

I was certain of his diagnosis as I looked over at his warmer a few moments after he was born.  Each baby had a team at his or her bedside, including a physician and several nurses.  Zoe's team was joyful;  there were jokes and occasional pauses in their work as they reflected on some nuance of my beautiful, yet feisty daughter.  Wyatt's team were a stark contrast.  They spoke in hushed, respectful tones as they worked on my son with efficient, businesslike hands. My husband jokes that my writing is often a string of homilies.  He's right.  This is the moment that began as I looked back and forth across the surgical suite, comparing and contrasting Team A and Team B as they saw to the needs of my newborn children.

Wyatt's cry at birth was different than Zoe's.  When he let forth the first breath of air that he had sucked into his tiny lungs, he sounded all the world like the newborns you hear on TV... only in short bursts. Zoe's pitiful wail would change shortly to the commanding screech she has now, but I did not hear her until after she had been totally suctioned out.  "She is the one that sounds abnormal", I remember thinking to myself.  "He sounds just fine to me."  I would later understand that she sounded like any other premature baby, but at the time, it gave me something to rationalize.  After the Neonatologist gave his awkward pronouncement,  they eventually brought Wyatt over, sleepily bundled up for me to see.  I gave him a quick peck before he was taken away by his procession of gowned attendants to the NICU.  "He doesn't look like he has it..."

Zoe was brought to me, mummified and scowling.  She was so tiny... so much smaller than her twin.  Even bundled up, she was still smaller than a football.  Zoe was too far away for me to kiss and I was about to ask for her to be brought closer when she was handed off to my husband and they too were whisked off to parts unknown.

"So small... So small.  Please be okay...  Please..."

I did not get to hold my children until the next day when I dragged myself and my IV pole almost the length of the hospital to the NICU.  After a night of lying half awake and in constant pain, I needed them and they needed me. Anyone that ever refers to a Caesarian section as "the easy way out" need only talk to me and hear the particulars about that walk.  My nurse was very concerned as I forced myself along... after all, we were supposed to be just dangling my legs over the end of the bed and here I was, on a mission, with my ass hanging out of a johnny gown.  She knew better than to stop me however, for at that moment, I would have crawled there over her broken body if that is what it took.

The babies were in separate isolettes and I visited each one in turn.  I was there for over three hours as my nurse came and went with a wheelchair, hoping to coax me back to my bed where I needed to rest.  The sad part was that I was resting;  the NICU, despite housing very sick babies, is the quietest place in the hospital.  The frequent spine-jarring announcements are hushed, the lights are muted and everyone talks in dulcet tones.  I spent a good while with each of them and examined Wyatt myself.  His ears were smaller and lower on his head and had a telltale fold.  His eyes were almond shaped with epicanthal folds.  His nose had barely a bridge and his face was flatter than hers.  His skull was shaped differently, being wider at the back and smaller at the front, giving the appearance of "points" on either side.  The back of his head was flattened and you could feel that his soft spot was open in a V to his eyebrows.  His hands, much to my delight, did not have a singer palmar crease and his toes did not appear to be parted with a sandal gap. Other than his heart, no other "abnormalities" were discussed.  "Maybe he's Mosaic... "  My husband came and finally convinced me to return and if not rest, eat.  Which I did, ravenously.

Flash forward a year and here we are.  My husband is in the kitchen putting stew in the crock pot and the kids are having great time playing together on the floor behind me.  Those fragile little humans are now thriving babies, who astound and delight us daily.  The only thing that has developed more in the last year is us.  Our thinking, our way of doing things.  There was a time where Wyatt's diagnosis would have meant something terrible.  (It isn't.)  There was a time where I would not have thought that I would have so much interest in genetic disorders and have time to make a difference.  (I do).  There was a time where it seemed that nothing was going to be right again.  (It didn't turn out like that at all).  There was a lot more born a year ago on this day than just these two babies:  Team Logan,  our network and support systems, our awareness, our desire to educate and advocate.  Two parents of a special needs child came into existence too.  We have all come so far.  It has been very difficult at times, of that I will not lie.  We've made therapy a casual everyday thing, something we can do while we play.  We make mealtimes fun.  We explore our world through the kids eyes, whether they be blue, brown or have Brushfield spots.  We love our son and embrace his differences just as much as we do his "sameness".

Today we celebrate many things along with the birth of our children.  Today will celebrate life and love.  We celebrate inclusion, we celebrate acceptance.  We celebrate strength and endurance.  Knowledge, education, awareness, advocacy... the list goes on and on. 

We celebrate new beginnings today. 

Happy Birthday, Wyatt and Zoe.  You are both perfect in every way.

You guys ROCK!

Checking In

[originally posted to Facebook Thursday, March 31, 2011 at 4:22pm]

I will admit that it has been a long time since our last twin update. I will also admit that I am not sure what day it is or what my phone number is (which is scary as I've had it since '93). Wyatt and Zoe were born on February 16 and other than a few highlights that I can string together out of the haze, the days have flown by. I can't believe they are now 6 weeks old (and now officially "full term").

Preemies face many obstacles that most people don't even think of. This whole experience has been a giant learning/refresher curve for me as well. Born at 34 weeks and 4 days, the babies were unable to eat; although they do come equipped with a sucking reflex, they were too small and weak to actually draw milk from a bottle or breast and when they did, they tired easily. Both babies were a pretty good size, which allowed them to play catch up rather quickly, but it still meant tube feedings via nasogastric tube for most of their first few weeks.

My experience with the NICU, although positive (those girls are fantastic and have the sweetest gig up there!), is slowly receding into the realms of bad dreams. For the first two weeks, it was awkward but relatively easy; basically I had two babies by emergency C section... and then went back to work. At least it felt that way. I was only a patient in the hospital from the Wednesday night until Saturday morning (the only reason I got to stay Friday night was the fact that I was an RN on staff). Starting Sunday morning, I spent at least 7 hours a day, every day, in the NICU with the babies. The first week was pretty awful with the fresh C section as the walk from ER seemed to be never ending. I actually had to use a wheelchair as I was either in too much pain or completely pegged out by the time I got anywhere. Simple things like getting in and out of the van were torture. After about 10 days or so, the pain had dampened from "excruciating" to "annoying" and it was only there when going from a stand to a sit or something similar. I was still sleeping in my big leather armchair as lying flat and rolling over were impossible, but I was managing (I finally got back into my bed last week). I would spend all day with the babies, slowly assuming their care, trying to teach them to latch and holding them while a tube filled their tiny bellies with at first preemie formula, then some feeds of colostrum and then finally milk that I pumped and left for them. Every morning I would arrive between 9 and 10 with a cooler bag and make a deposit in the fridge (then eventually the freezer). I would get report (usually I arrived during rounds and could eavesdrop a bit) and start the day. They were fed every three hours, one hour apart. Zoe would start at 1100, Wyatt then at 1200, Zoe again at 1400 and then Wyatt again at 1500. By the end of the 3 o'clock feed I was usually exhausted and needed to sleep... that is if I hadn't already passed out with a baby in my arms at least once during the afternoon. Sleep thankfully came when I arrived home; when not pumping or eating I was sleeping and I needed it. I'm not a good sleeper to begin with but September was the last time I can remember getting more than 3 hours in a row. You can imagine my surprise when I was now clocking 6 or seven hours. Heaven! Then I would get up and do it all over again.

Sean was home for the first two weeks which made things pretty simple. We would take Quinn to school and then he would drop me at the hospital. The boys would come by for a visit later and then pick me up. It was difficult keeping Quinn occupied as he is a busy little guy, so we tried to keep his visits short. He would draw pictures and we decorated the babies rooms with them, much to the delight of the nurses. Still, it was very hard for him. We always reward good behaviour with a high-five around here... Quinn has added a "Go Team Logan" at the end which is just adorable. He flips back and forth between desperately wanting to help and being upset. It's all normal and it's improving, the closer we get to our "new normal" over here.

The staff, as I mentioned earlier, were fabulous. Organized, knowledgeable and very instinctive. They knew when to push and when to not with me, which I appreciated. They also made a point of appearing to keep their distance at times, which I also appreciated, even though I knew they were keeping a close eye on us. Finding out that you have a child with special needs is hard, that I know from both sides now. I felt bad for the social worker who was obligated to stop and talk to [read: assess] me, because she knew who I was and where I worked. I've had a few staff through, it's hard to assess the "assess-er" sometimes. She too was very nice. We talked about a few things, resources that were to be set up, but also my level of coping. I would be a complete fraud if I didn't mention the crying spells here, so there you have it. For the first two weeks, until Zoe came home, I would have my little moments at random. Partially hormonally fueled, but also grieving the loss of my "perfect" baby. It sounds a bit weird as I have a healthy baby, but during pregnancy, you have a fantasy baby (or babies, in my case) in your mind which is rarely what you get, but nevertheless it is there. Having a son with Down Syndrome was not my fantasy by far and I had acknowledge and accept it. Sounds very clinical now, doesn't it? It was, simply because the little psych nurse never left my shoulder, thank god, so I could rationally think my way through the crap if I just took a breath. It was like a whirlwind of pain as I grieved the loss of my fantasy football/scientist/rock star (or whatever) son and feared what the future would hold for him and what it would take to get him to whatever level he could achieve. I also cried for my own selfishness and for my own guilt, which you mothers out there will certainly comprehend. I cried silently while holding my son at the hospital and wiped my tears off his face while he slept. I sobbed uncontrollably in the shower. Once this all had started, I wouldn't have to think of anything at all and the tears would come on their own. Like in the grocery store. Or while waiting in line in the cafeteria. I also cried when I had to leave them every day, holding each one tight and kissing their tiny faces and hands. Part of me whispers "pathetic" as I write this, but it is dreadfully hard to leave your children behind. You truly don't know love until you become a parent. I know I am going to piss a few people off with that statement, but it is true. You may have pets, you may love your significant other, but you cannot comprehend the overwhelmingly pervasive feelings you get until you have children of your own. I'm sorry, but the cats and dogs just don't cut it. Each and every day, I felt as if I cut parts of myself away and left them behind. I couldn't stay and I dreaded coming back in the morning. It was hell.

I tried to contain it all when talking to family and friends, especially Quinn. There was one day when my Mom called and caught me off guard and got the brunt of it, but that was about it. I tried to stay up, to stay clinically focused as that provided some relief from the rawness, but the cracks would form and the tears would seep through. My grief, coupled with hormones, mixed with worry for the twins and guilt for ignoring Quinn really made things pretty toxic. Thankfully I have wonderful friends who would take Quinn for an afternoon on the weekends, which certainly helped and gave Sean and I some time to talk. I was just starting to come out of it when my one nurse told me that Zoe could go home the next day. Naturally, I burst into tears.

With each and every feed that I was there, we had been working on teaching the kids how to eat. Both had a strong suck, yet Wyatt's mouth shape led towards an unusual latch. The NICU rule was that they had to be NG feed free for 48 hours before they could go home and I was determined to make sure that happened. After I started bringing my "home cooking" in for them, we started "test weighing" them. Each time they fed, they would be weighed before and after to see what they had gotten off the breast and then "topped up" with either a bottle or a 'tube. Zoe progressed slowly but steadily from the start. Even when the kids were separated in their own isolettes, you knew just knew Zoe was the stronger one. Our little mighty Micro-Me pushed herself and did a little more every day. It was frustrating as these were preemie "baby steps", but you could see the progression with her daily. Wyatt was another story. He would feed from the bottle once a day, would have a freak feed once in a while, then fall back asleep and have to be tubed for a day and a half. I was delighted that the OT was a girl I had worked with at Etobicoke and together we worked on Wyatt, trying this technique and that on a bottle and analyzing the results. I had to teach him to pace himself as he would forget to breathe and choke or exhaust himself completely. We tried different holds, different nipples. The lactation consultant was also helpful, popping by daily with different holds and some words of encouragement. When he wasn't feeding, I held him and had him work on a soother to try and strengthen his facial muscles. Zoe's weight, after the initial loss, steadily climbed while Wyatt's rose and fell, seemingly at random. They were assessed by the dietician and the EBM (expressed breast milk) that they were getting had to be fortified with some formula to add extra calories. I generally equate formula to chips or some kind of ready made frozen entree, so you can understand how underwhelmed I was by this. Sure, it may have started out with good ingredients, but it's pretty much crap that puts weight on babies. In this instance, we're using it like protein powder to put weight on my preemies. To this day we are still using it and I look forward to when it is no longer needed. Not only is it expensive, but it's hard on their little tummies.

Sometime during the second week they began rooming together and shared a crib, which was nice for everyone as they were back together again. I also didn't have to sit helpless as I held one baby and heard my other crying from a room away. We were plugging along when I went in one day and our nurse told me that Zoe had been tube free for 24 hours. I wasn't going to get my hopes up as she was still quite small and I wasn't sure that they were going to let a four pound baby go home in a car seat, but it was still good news. The next day we had passed our mark and I was told she could go home if she passed her car seat test. Which, naturally, she did with flying colours. Two weeks to the day after she was born, we brought our baby girl home. Then the real work started.

My trips to "work" now became "take your kids to work day" as I lugged Zoe back and forth from home to the hospital. With Sean's return to work it made our lives more difficult as we tried and schedule visits to the NICU and still take into account things like Quinn going to school. Luckily, Sean's Dad came down for a week and looked after Quinn while I shuttled back and forth between Wyatt and home. Having one twin with me at home and one in the hospital was exhausting; I had to keep Zoe on the same schedule and was up most of the night with her and then had to pull my "shift" with Wyatt. Every feed that I was with Wyatt, he was learning and adapting and getting a little bit better. Unfortunately, with me being there for only 2-3 feeds a day, it was going to be a long drawn out process. By Tuesday of Wyatt's third week, I was getting frantic. Although that morning he had completed a full bottle (causing the staff to have a "Go Wyatt" happy dance, so they tell me...) it was going to be a long haul if I didn't step things up. Zoe and I would have to start doing 'round the clock stints with him in order to get him off his damn feeding tube. So, that Wednesday, we moved into one of the courtesy rooms. They are small, uncomfortable and almost impossible to sleep in, but it sufficed. I was there for over 32 hours and missed only one feed (the night nurse let me sleep as I guess I was pretty zombified by then). By the time I left I was exhausted and completely discouraged as there had been no sign of improvement at all. I was crying in the van as I told Sean my fears that our little guy might be in hospital for weeks, maybe even months at this rate. I went home and slept and then took Friday morning for Zoe and I. Up until that point, Zoe and I had not had a morning where we could just feed and rest and spend time other than in preparations/travel. Quinn was also going to his Grandpa's for a March Break after school that morning, so I wanted to be there to see him off and say goodbye. We had our morning, I got some sleep, I (tearfully!) saw Quinn off on his vacation adventure and I called the NICU to let them know that I would be in later. The nurse mentioned casually that Wyatt had been tube free since just after I had left. It was early, but it was a tiny bit of hope.

With our little seed of hope starting to sprout, Sean and I went to visit him in the evening for his 2100 feed. Still no tube! I talked to our nurse who told us to go ahead and bring in the car seat just in case as she felt this was the beginning of the end of the NG. She was so confident, in fact, that she had taken it out already. By the time we returned in the morning with the car seat, Wyatt had surpassed his 48 hours. I swear, it was as if someone had kicked the knees out from under me as I could barely stand with a mixture of joy and relief (and simple exhaustion).

We agreed to bring him home Monday as we needed to make sure all his follow up appointments had been take care of and links to community resources had been started. I went up with Zoe, just like every other day and hung out until Sean got of work and could bring us home. Again, RHIP as I'm sure they would have booted us out earlier if they had wanted to. It felt so good to bring them home together. It just felt... complete to tuck them into their bassinet that night, almost a month after I didn't make it to dinner.

Since then, we've been trying to find our stride. Having most of a week with just the babies helped as I could putter around their schedule as best I could. I also had to try and get them on the SAME schedule as the hour apart thing was unworkable at home. That part was easy, as was changing them to four hours just this past weekend.

Now the challenge will be to keep up with the appointments. Both have been seen by the family doctor and the pediatrician. Last week, during our routine pediatrician appointment, we were pleased to hear that she felt that the kids were doing well and gaining weight. Since Wyatt had only averaged 12 g per day since discharge, we have to continue with our formula top up for a while. Wyatt's AVSD seems to be quite balanced at the moment as well, so it is not posing any problems right now. The visit wasn't all good news however, as she found that Zoe had an inguinal hernia which had been totally missed up until that point. She reduced it in the office, but let us know that our little girl would need surgery too and probably sooner rather than later. We didn't treat it like a big deal, but it is just one more thing. We see the surgeon at McMaster on Monday (right in the middle of the hospital change over! It will be hell) and we see the cardiologist on Tuesday for Wyatt for his echo and to find out more about his surgery. I'm sure I'll have dates and whatnot by Wednesday, so I will update if there is anything.

The babies themselves are just darling and each has their own distinct personality. Zoe is colicky, loud and a laundry generator. Her eyes are the colour of hematite and are just as bright and shiny. She also ensures that no one gets any sleep around here. Wyatt is laid back, cries only in short bursts and is easy on the laundry. He is still very sleepy, but this morning he was wide awake and it was nice to sit with him as I got my Tassimo on. He gazed around with his dark blue eyes and focused on various things around the room like any other newborn. He can also hold his head up for a few seconds and has excellent muscle tone for Trisomy 21. We still don't know what the future will hold for him, but he seems to be pretty good with most things.

Right now they are chillin' in their swings, bellies full. I'm going to try and get some shut eye as I am only averaging about 3-5 hours total a day. That will get better, but for now, we soldier on. When you have twins you really learn your limits: how little sleep you can get, how little you can eat or drink, how much you can do with one hand or possibly a foot... How long it takes you to notice that it's been a while since the last shower. Which brings me to the next limit: memory. I don't have one. I don't know if I will every have one again, but for now, it's gone, baby. I have a book and a board I rely on; I would be completely messed up without either of them. The board is a cheapo whiteboard from the dollar store with "Mommy's Brain" written on it. It is stuck to the front of the fridge. On there I add any sort of random thought that I come across that need to be remembered. Right now, in random comic balloons, there are entries like "Bottles: 60ml". There are mini shopping lists: "Batteries, pop, toilet brush, mayo". There are memos like "Call ___________" and the most important one "Last Shower: ______". The book is different. It is a 3 column leger that keeps track of when they fed, who pooped, who took how much top up, who slept. It sounds ridiculous to parents of singletons, I'm sure, but it has to be done. Any sort of trend can be monitored as I have raw data; any sort of question any of the doctors may have about the day to day stuff, I have it at my fingertips ('cause it ain't stored upstairs). Both are invaluable tools that I would recommend to any new parent. Especially if they have or are having multiples.

Once again, thanks to all for the kind comments and emails. They have meant a lot to us over the last month and have given us fuel when we were running on empty. This is not easy and is getting harder with each new thing that crops up, but we can do this. We have to.

Go Team Logan, go.

The Best Laid Plans

[Originally posted to Facebook Tuesday, February 22, 2011 at 10:02pm]

Life never ceases to amaze me. Not 12 hours after my last post, I was in BCH in labour. What are the odds?

After our plumber adventure and my trip to pick up Quinn, the day was pretty uneventful. Naps were attempted, tv was watched. I was feeling very slow and heavy, so I stayed in bed to rest even after Sean came home. As I lay there, I was planning my evening: find all the bottles and such, get the crib linen washed and on the crib, sort out the bassinets, find a few missing boxes of baby things. It was a short but important list. Sean called me for dinner and on my way downstairs I made a quick stop in the washroom.

Where my water broke.

All Sean heard was "Gaaaahhh!". Once he figured out it had nothing to do with his beefaroni, we got moving.

The next 20 minutes were a blur as we topped up half-packed bags, fed our son and made plans for his sleepover. Luckily, my friend and I had sorted out the contingency details THAT MORNING. We piled in the van, the contractions hit and honestly, I don't remember much until I got in the ER doors and stumbled my way to the elevators to L&D. I'll spare you the details of the next three hours, but know that when I found out that my OB was on call, I may have been a little exuberant with my "OH THANK GOD!".

I had an emergency C-Section and other than an anesthesiologist who quite possibly thought he was an acupuncturist (OW!), it went reasonably smoothly. Once Mr. Jabby found the right spot, I was numb up to my chest (I could feel and use my arms this time, as opposed to the floating head phenomenon that I had with Quinn). Wyatt was born first, at 10:18 pm (4 lbs, 13oz). He was quickly whisked away to a warmer and I really didn't get to see him. I was about to say something when I felt a punch in the diaphragm from the inside. Seems Miss Zoe did not want to be born; in the words of the OB, she delivered the first baby, turned back and thought "where did the second baby go?", as both babies were head down at the start of the procedure. Zoe apparently did not want anything to do with what her brother was up to, had turned, crawled up as high as she could go and flipped over so that all the OB could find was her back. My OB spent the next few minutes trying to turn her manually (which meant more punches) so that she could be dragged kicking and screaming into the world. Which she was, at 10:21 (4 lbs, 1 oz).

Once she had been suctioned and I heard her cry, I turned my attention back to Wyatt's team who were clustered around his warming bed. They were too quiet. Then I knew.

I knew then, even before the Neonatologist came over with his sheepish look and cleared his throat what he was going to tell me.

I knew that Wyatt has Downs Syndrome.

He spoke quietly to my OB for a few seconds before she loudly announced (as she was sorting out my insides) "Jennifer knows. She chose not to have the amnio... she knows a lot about this. She's a nurse. She knows. She knows about the heart. Just tell her." What he said then was that Baby A (Wyatt) appeared to have some of the physical characteristics and hard markers of Downs Syndrome. We would not know exactly or the extent until the cord blood samples came back in a few days. I have no idea what I said in reply, but he seemed to be accepting of it and shuffled off. Wyatt was brought up to me all bundled a few minutes later and I got to kiss my son before he was whisked off to the NICU. Zoe was brought shortly after that and all I could think of was how small she looked. I didn't get to kiss her before she too disappeared. Sean followed them and I was left with the team, talking shop with them whilst they cleaned and stitched me up.

I had to remain in recovery until I could move my legs and wiggle my toes. I have no idea how long we were there but I managed to con some jello and a cheese sandwich out of my nurse (remember, I didn't get my beefaroni). On the way to my room they wheeled me through the NICU; I got to stroke Zoe's foot and touch Wyatt's hand before I was in my room for the night. It was a long night too... I couldn't have any pain meds until after 4:30 and it was only Naprosyn and Tylenol at that point anyway.

I didn't get to hold my kids until much later the next day when I stupidly made the long walk to the NICU on my first ambulation. I spent three hours there, holding each one, talking to them and tryng to not get all our tubes tangled up. It was hard leaving them and I was physically exhausted and in a great deal of pain. That little stunt set me back two days, but I'm happy to say that I am getting better.

As it stands now, they will be in hospital for weeks. There are a few milestones that they have to meet before we can entertain the idea of bringing them home. They are being fad mainly by nasogastric tube, but are encouraged to latch and have the occasional try at a bottle when they have the energy. They have to gain weight and to grow. They may come home together or individually. We won't know until we get there, basically. So far, any issues Wyatt has with anything seem to be due to his prematurity and not his Downs.

Both are beautiful babies and have their own personality. Wyatt will be my cuddle bug, I can tell. He has beautiful almond shaped eyes that are blue with a hint of green in them and the longest eyelashes I have ever seen on a newborn. Zoe has no problem letting you know what she wants and has the brightest blue eyes that can melt your heart or stare you down (I have no idea where she gets that from either).

We're waiting for the results of Wyatt's cardiac tests, which should be available tomorrow. His cord tests came back positive for Down's in all samples; we won't know the extent of his delays (if any) until we get there as well. It is what it is.

How are we doing? Quinn is on cloud nine about his new brother and sister. It hits Sean and I once in a while and I have at least one good cry daily and tear up frequently. I love my son dearly; that doesn't mean that I would ever have asked this for him. The grieving process is normal thing... I just have to let it happen (which, as you know, I'm not very good at). I am trying to go with the flow. It's hard, but I have to do it. I have to heal. That too, is what it is.

I am happy to note that neither of them has ever needed oxygen. They came off their IV's two days ago and just have their monitoring leads and NG tubes. Wyatt was moved to a crib yesterday; Zoe will need to stay in her isolette until she grows a bit. Wyatt has shown no signs of jaundice, while Zoe had two days at the spa, basking under the UV lamp (she hated it, BTW). Both are doing very well and are very healthy for preemies.

Both Sean and I would like to thank our friends and family for the tremendous support we have received over the last little while. From a few well placed words of support to looking after Quinn to making sure we remember to eat and sleep, it is all very much appreciated. The next little while is going to be rough, but it helps knowing that you are out there.

We'll keep you posted.

It Only Hurts When I Breathe...

[This was originally posted to Facebook on Thursday, January 13, 2011 at 10:36pm]

This is the hardest thing I've ever had to write.

By hard, I don't mean actually getting the words in some semblance of logical order as I've been waking up at 3am writing it in my head for about a week now. It won't leave me alone and if this is what it takes to get myself organized, than so be it.

I should probably explain a little more...

Last week was one of the roughest I've ever had to experience. On Monday, my Aunt passed away... by Wednesday, one of my friends/colleagues had been in a horrific MVC and it was uncertain whether she would pull through. Thursday my world fell apart at a doctor's appointment and Friday was the funeral. I've been a disaster since.

In order to make any of this make sense, I have to be chronological and some of you need a little background information.

After a year of trying to give Quinn a sibling, we gave up last summer. By July I was pregnant and by September we knew it was twins. Once the initial shock wore off, we did the usual screening tests known as Integrated Prenatal Screening or IPS. I was very distressed a few days later when my family doctor called to let me know that Twin B was fine, but Twin A had been flagged as potentially having Down's Syndrome. I was stunned, especially when I went back to the ultrasound pics I had been given and consulted the fetal measurements that I had covertly copied down. One of the measurements they consult is known as the nuchal transparency which is basically the amount of fluid that collects behind the baby's head at the neck. The larger that number, the higher the risk of Down's. Off the top of my head, I believe the cut off is 3mm; Twin A was 2.5 (Twin B was 2.1 and if memory serves, Quinn was 2.6). Not an alarming number. I did some research and scanned the Ultrasound images until I nearly went blind, looking for nasal bones and a few other clues that might give me a little hope. To me, I must have flunked the bloodwork as the babies looked fine. My doctor suggested we go for genetic counselling and we took the first appointment at Credit Valley.

The genetic counsellor was quite kind and explained to me that the bloodwork was pretty much irrelevant as I was having twins. Furthermore, with my age (38 at the time), I had a 1:125 chance of having a baby with Trisomy 21 (Down's Syndrome). With my test results, I had already beaten the odds as my results were 1:300. If we were really concerned, we could arrange to have amniocentesis, yet with those odds she wouldn't even recommend that. Sean and I looked at each other an said no thanks as the odds of miscarriage with the amnio' were twice that of actually having a Down's baby anyway. Besides, they wanted to test both twins and the idea of something happening to one of them distressed me greatly. We left the appointment much happier, with the knowledge that yes, we may be holding a Down's baby in several months time, but the odds were on our side.

This all took place just as the nausea kicked in; I spent (literally) four months with my head in the toilet. Since my Dad was undergoing his chemo at the time, we were both pretty pale and easily nauseated. I opted for no meds but I was pretty close to taking up Dad's offer of a couple of Zofran on many occasions. Coupled with shift work in ER in the 'Pod and a few other pregnancy symptoms, I was steadily losing weight and miserable as hell. The nausea let up some time around my birthday at the end of November and it was a pleasure to be able to eat and drink again. My mother's family threw me a lovely baby shower and the twins became real again... finally I was going to be able to enjoy this pregnancy and the promise of joy that it offered. We even chose names: Twin A, the boy was to be Wyatt Donald (the Donald after my grandfather) and Twin B, the girl, Zoe Margaret (the Margaret after Sean's late mother). They became real, separate individuals. As their movements became stronger, you could also start to differentiate a little bit of personality as well.

My belly grew larger, my steps became slower, my breathing more laboured and my temper shorter. I made it through Christmas and by New Years my OB took me off work. Well, as far as we know as Occ. Health seems to be mandated to things difficult, but I digress. She gave me a big lecture on relaxing and how I should try and sleep as much as I can as this was the easy part (she should know, she has had twins herself). Since Sean was actually able to go with me for a change, she made sure that he knew I was to be calm and reasonably stress free or as she put it "you're going to end up one of those patients in your pod". Duly noted. We went home, Sean took over most of the household chores and I continued on with my nursery project in between naps.

Then last week happened. One bombshell after another, with little frags here and there such as flunking my sugar test and whatnot. The biggest shocker was Thursday...

You have to understand that so far in this pregnancy I have seen: My family doctor, my OB, the guy filling in for my OB, A cardiologist (and worn a Holter monitor for 48 hours), a genetic counsellor... I've been having ultrasounds every two weeks since November. been seeing my OB bi-weekly for the same amount of time. Going to appointments is almost a full time job in itself for me. I mentioned to the genetic counsellor about my brother's Marfans and since that time everyone has been asking me about that as well. I wasn't all that surprised then when my OB wanted me to see a pediatric cardiologist that also does the fetal cardiology for our area. Naturally, I assumed that it had to do with the Marfans and I wasn't worried at all. I had a lovely time in his office watching his fish and we had a nice chat about Marfans and my brother before he sent me across the hall to have a quick echocardiogram done on the babies (for those not in the know, it's just a detailed ultrasound of the heart). Since I have been ultrasounded to death, I still wasn't worried and prepared to get all gooey.

After the echo, he called me back into his office. He let me know that Twin B (Zoe) was ok, but Twin A (|Wyatt) had (most likely) AVSD or AtrioVentricular Septal Defect. In other words, my Wyatt has a hole in his heart, one that if it didn't close on it's own, would cause him to have surgery at 6mos of age or so. To make matters worse, he explained that 75% of babies that have this particular heart defect also have Chromosonal Abnormalities. He cited Trisomy 21 (Down's Syndrome) as the biggest incidence. That was about the point I started to cry. He apologized profusely, and I let him know that it just wasn't that, my week had been horrible and I let him know why. He also works in ER and was saddened to hear of our colleague. Then we both got misty and it was downhill from there. He let me know that he was taking the images to Sick Kids the next day to share with some of his colleagues and if possible, fast track an appointment. I agreed, letting him know I would be out of town the next day at a funeral and could he please leave a message. I took a cab home as I could barely stand.

I got in the door and wailed my freaking teeth off for the next 15 minutes before I could get it together enough to call my husband at work and my parents before they left for the two days of visitation and funeral. I basically threw it at my parents matter of factly as that was the only way I could get it out. Sean... was a harder tell. What can I say? I had shock and despair and mother guilt and all sorts of nonsense whirling around in my head. You have to understand that this is one of those times where being a nurse is not a good thing. You comprehend totally in an instant and are able to forsee potential and actual problems and what interventions you will have to employ to get the best outcome. It makes for a very busy brain, especially when you are drawing diagrams and health teaching in your sleep. I'm only sleeping 3 hours consecutively now anyway...

I went to the funeral and managed to keep it together for the most part and focus on the loss of my Aunt. On the way home I borrowed my brother's cel and checked the messages. The babies cardiologist had indeed left a message, saying that he was getting them to book me in for next Friday (as in tomorrow) and right after was a message from the booking girl. So tomorrow, I have to be at Sick Kids at 9am for another echo and an indepth consultation with a cardiologist. Then it's fly home to feed everyone and then go to my OB appointment in the afternoon. It's going to be a full day...

So now, much as it's been since Friday, we wait. We wait to get any slip of information that might be helpful or might provide a fragment of hope. AVSD in itself is not a death sentence and yes, neither is Down's. I realize this. Both are going to be fucking hard though. Both are also the second best scenario when you take into account the other chromosonal probalems that AVSD is associated with. Aside from Trisomy 21 (Down's), there's also Trisomy 18 (Edward's Syndrome) which IS a death sentence, Polysplenia which is a drawn out death sentence and carries with it many horrific defects of the organs... and quite a few more that I could scare myself more with. On the other, non chromosonal side there are also things like Tetrology of Fallot or "blue baby syndrome", which could also occur with any of the above.

Ultimately, we don't know what we are facing. We don't know if amnio is an option right now, we don't know if we'd take that option, we simply have no idea. That, right there, is where the fear comes from.

Why am I doing this? It's really the easiest way to tell as many of my family and friends as possible. I can't keep explaining all of this over and over and fucking over again as it is just too much for me to handle properly right now. I also find myself having to repeat myself frequently and since people tend to retain more of the written word than the spoken, it was another easy solution. The "telephone" phenomenon has pretty much guaranteed that I can't trust others to pass this on properly as there are specific details that are easily missed.

So there you have it. It's a lot to digest and I'm trying to do so to keep from going over the top. I'm grumpy, I'm tired and I'm trying to stay calm. I also really don't need to hear any crap about still having one healthy baby, etc, etc as that is surely not the fucking point. With nine weeks to go, tops, we don't know if we are planning for one baby or two. We don't know where I will be delivering, who will end up in what hospital... if we are going to be planning a funeral. We simply do not know.

That, in itself, hurts more than anything.

You'll forgive me while I hope and pray for the other 25%...