Zoe and Wyatt's Excellent [Medical] Adventures

[Note:  This is one of the series of letters that I posted to my friends and family on Facebook between January and May of 2011.  They are rough, raw, painful in spots and are completely representative of the level of understanding I had about Down syndrome at the time (read: precious little).  Despite ump-teen years of nursing, I had very little understanding of what Intellectual Disabilities were and how deep my own ignorance ran. 

This is the story of Zoe's surgery and Wyatt's first trip to the cardiologist -Jxox]    

Believe it or not, we try to keep things reasonably drama free around here. The unwritten family rule is this: regardless of what washes up against the house, inside we stay cool.

We like it quiet.

Then we had twins. I fear that quiet is a thing of the past.

Monday and Tuesday of this past week were scheduled to be back to back appointment days. Monday was to be Zoe's consult with the surgeon while Tuesday was Wyatt's trip to the cardiologist. That changed Monday at Zoe's appointment. Her inguinal hernia  had become harder to reduce prior to this; in fact the last time I did it, I wanted to be sick as it required more pressure than I was comfortable with and it went in with an almost audible squish-pop. Yuck. The surgeon, who was French (which is only significant in that she is one of the few people that can pronounce my daughter's name correctly) had a hard time reducing it as well; she and Zoe battled it out for a few minutes before it popped back in. Zoe screamed the entire time. It was awful. The surgeon had an opening in her schedule the very next day, which when the shock wore off, we jumped at it. We took it for three reasons: 1) to get it over with, 2) as it was becoming harder to reduce, the chances of it becoming incarcerated were increasing all the time and 3) the surgeon was booked up for weeks doing complex 4 hour tumors and whatnot and with it getting worse, we didn't want to take any chances. Tuesday it was to be then.

Some of you may be shocked to learn that I don't have a cel phone... especially since I was practically married to mine at one time. To be honest, it's a leash that I'm happy to be without and I'm liking the money I'm saving. The unfortunate part is that there are probably three times a year that I could really use one. Monday was that day. I called Wyatt's cardiologist via payphone on my credit card and explained that we would have to reschedule and why. The receptionist was very sweet and told me she would leave a message at my home number with a new appointment. Fabulous. I figured it would be in a few weeks time, but what can you do? Wyatt's echo is very important, but Zoe's hernia was technically more "on fire" and as a parent, you have to make these difficult calls sometimes.

We did our pre-op, we headed home after a very long day at Mac. We planned to be home by noon and ended up being home just after four, which as you can imagine totally messed up everyone's feeding schedule and whatnot. Going anywhere with a baby is tricky as you have to pack their whole world; it's a major maneuver to get twins and a four year old out the door at any time. Once we had sorted out everyone and called a few people (and updated my status to take care of the rest of my peeps) we started our planning for the next day. I would be staying over with Zoe while Sean, Wyatt and Quinn would return home. I have enough EBM in my freezer for the whole NICU, so Wyatt would be more than taken care of for 24 hours. I packed clothes for both Zoe and myself, bottles, pumps, sterilizer bags, diapers, wipes... you name it. These days, hospitals don't supply anything as they expect you to bring your own supplies. If there is one thing I hate it is being unprepared, so it all had to go.

Zoe's surgery was booked for 1230; we were supposed to be there for 1100. We made it on time... and had to wait. And wait. And wait. Zoe had been NPO since her last feed at 6am, so keeping her quiet and happy was a bit of a challenge. Twins also make you a bit of a celebrity, so quite a few people were coming over to check us out and ask questions. This I normally don't mind, but with an hour's sleep and my daughter crying and her about to be cut open, I really didn't have the patience for it and had to grit my teeth a few times. We were finally called in and Zoe was "vitaled" and changed into a baby hospital gown (which was so big on her it looked like a christening gown). We wrapped her up in a hot flannel to soothe her a bit and it worked as she stopped crying and conked out. I was on edge as I walked back to the waiting area; halfway there I looked up and saw Sean's Aunt walking towards us. I almost burst into tears. It's amazing how comforting a familiar face can be in these situations; it's made even more so when it's family. (Also, thank you to the little birdie that passed my status update on... xox)

Our Aunt's visit also helped offset what was another lengthy wait. I have no idea what time they finally called us in, but it had to be close to 2. I walked in carrying my daughter and held her tight as I met quite a few members of her team and spoke to the surgeon. Since Zoe is only 6 weeks old I was unable to be with her as she went under and I was definitely banned from the OR. I had to hand my daughter over to a stranger and shuffle back to the waiting room to the rest of my family.

Sean wisely directed us to the cafeteria so that we could eat. Partly to take our minds off things but also to make sure that I would eat as I tend to forget these things when I am upset. Since I am breastfeeding twins, I need an extra thousand or so calories a day, so missing meals is right out. I rushed through my lunch, knowing that the surgeons actual part in the operation would take about 10 minutes and I wanted to be back there to meet up with her post-op. As it was, we got there just as she did. She let us know that Zoe did exceptionally well and I would be called in to be with her as soon as she started to wake up a bit. She also noted that there were no concerns from her point of view so that we could follow up with our pediatrician. Which, aside from being great news, is nice as it saves us another trip to Hamilton.

It seemed like an eternity passed before I was called in. Zoe was still asleep, but rooting like crazy and had to eat. She fed and before I knew it, our room upstairs was ready. This was a pleasant surprise as I expected to be in post op for at least a few more hours. As we were getting ready to move her upstairs, Sean told me that an old family friend of ours had stopped by and was waiting for us by the elevator. Zoe went upstairs while I talked to Dave for a little bit... once again, a friendly face in the middle of a chaotic day can make the world of difference. When we got upstairs, she was asleep in an enormous crib with rolled towels creating a little nest. They don't normally get babies that young I guess so she was a bit of a star with the staff as quite a few had to pop in to see "the baby" and "the twins". Since she was sleeping off the anesthetic and as comfortable as any princess, we nipped off to Shirley's for a fantastic (and much needed) home cooked meal.

I stayed on a hard little pull out couch thing that wrecked my hip and reminded me that I am old, but I did manage to get some solid sleep. I was very impressed with the staff... even though both her day nurse and night nurse's ages almost added up to mine, they were very knowledgeable and kind. They also gave us a bag with literature about the unit and a bear for Zoe (that was her second bear of the day as the OR nurses gave her a little one as well). Remember all my packing and planning? Not needed as they brought armfuls of diapers, wipes, formula, bottles... whatever I needed to the room. We're also talking proper wipes here, not the ghetto kleenex-y ones that they use at BCH that made my kids bums bleed. They were really helpful and ran to get anything that I thought I would need. It was almost a pleasure to be there.

Zoe was discharged home mid-afternoon on Wednesday and I was very happy to see my family again. We've managed her pain (if any) with Tylenol and kept her incision and tiny steri strips dry. They should come off in a day or two and then she can soak in the tub in another week.

Wyatt's cardiologist had re-booked him for Thursday afternoon, so there was to be no rest for this family. Knowing how busy he is, I was grateful that his secretary was able to totally rearrange the day to fit us in. I packed up all the kids and we headed off on another doctor adventure. I never really realized how many of these we've been doing until Friday morning when Quinn asked if we had to go to "the doctors". When I answered no, he then asked if we had to go to the hospital, to go for an ultrasound, to go for blood tests... After he had exhausted his list and I had answered no to all of them, he replied "Oh good. I'll just go play in the yard then. If I remember how...". Ouch.

The people at the cardiologist were very tolerant of the Swiss Family Logan descending upon them, with our massive stroller, diaper bags and assorted baby paraphernalia. Zoe and Quinn hung out in the waiting room with the secretary while Wyatt and I went in. Wyatt handled the checkup portion quite well but was pretty restless through the echocardiogram. I had to stoop down and hold his hands as he kept trying to take the probe away from the sonographer, the little monkey. We returned to our gear and the rest of the family for a few moments before the Doctor called me in again. He had the images running and told me that he wanted me to take a look at something.

As you all know, Wyatt has AVSD or Atrioventricular Septal Defect.  Wyatt's Dr. showed me that the ventricular part of the defect had narrowed since the last echo in utero. In other words, the bottom part of the hole was not as big as before, which was good news. In layman terms, this means that the mixing of oxygenated and deoxygenated blood in the heart would not be as much, thereby reducing his symptoms (as of now, he has none). He then continued to say that he wanted to repeat the echo in a month's time. If what he felt was happening was actually happening, we may be able to postpone Wyatt's surgery until he was four years old. The Doc was still going to present Wyatt at Sick Kids (ie: in Rounds) in a couple of months time, but he felt that things were not as dire as expected. This was fantastic news, to say the least. Waiting will give Wyatt's heart time to grow and he with it, thereby making it a little easier. We shall see in a month's time.

I'm not sure if I'm learning to appreciate the little things or if I'm getting better at handling new crises that come our way. The BFF commented the other day that I sound better (ie on her mini psychosocial assessment) this time (post-partum) than I did with Quinn, even though "this time" involves two very complicated babies. I have to agree with her. Even though Zoe has us all up all night long with her colic and revolving symptoms and Wyatt gives me the willies every time he freaks out and turns blue, it's do-able. I don't know how it is, but it is.

Now if I could only get some of that pesky sleep...

Checking In

[Note:  This is one of the series of letters that I posted to my friends and family on Facebook between January and May of 2011.  They are rough, raw, painful in spots and are completely representative of the level of understanding I had about Down syndrome at the time (read: precious little).  Despite ump-teen years of nursing, I had very little understanding of what Intellectual Disabilities were and how deep my own ignorance ran. 

This one in particular is our "NICU story", full of preemie babies, twins, post-C section stuff, firm diagnoses, post partum blues and overall NICU stuff. -Jxox]    

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 exhausted 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 was only there when going from a stand to a sit. 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--and when that was full, started on the freezer.  Usually I arrived during rounds and could eavesdrop a bit on report and start the day.

The babies 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 tired 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. Rest came when I got 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, 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 my area; 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 that and accept it. Sounds very clinical now, doesn't it? It was, simply because the little psych nurse never left my shoulder,  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 mourned the perceived 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 pain--both physical and mental--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 dietitian 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 a newborn with 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 ledger 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.