The Best Laid Plans

[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 "birth story", full of high risk pregnancies, emergency C-sections, twins, medical stuff, diagnoses and post partum blues. -Jxox]   

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 Neo-natologist came over with his sheepish look and cleared his throat what he was going to tell me.

I knew that Wyatt has Down 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 Down 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 trying 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 DS.

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 syndrome 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.

Par For the Course

[Note:  This is one of the letters that I posted to my friends and family on Facebook when we received Wyatt's inter-utero AVSD diagnosis and learned that there was a 75% chance of him having a chromosomal abnormality, probably Down syndrome.  These are rough, these are raw.  They are painful... and totally didn't have to be if I had any understanding about what DS was in the first place.  It is these early days that prompted me to start Down Wit Dat... to educate and to effect change.  Down syndrome is not something that needs to be grieved.  Ever.  -Jxox]      

Oh my.

It is very easy to remain positive in the face of good news. I've spent the last week as well balanced as a late 30-something year old pregnant woman with twins can be. Well, we can't be having that, can we?

After last week's visit to the High Risk clinic, my OB and I left it at "come see me in two weeks", "take your blood pressure next week", "have another ultrasound in two weeks" and "come in if there is a problem". You can imagine my surprise when her secretary called me on Friday to book an appointment for Tuesday. Not only did she call me when I was napping, but when she couldn't get a hold of me the first time, called my husband at work (who told her that I was probably having a nap). She then called me and booked me for what I thought was an office appointment at 1:15. With so few weeks left, I just chalked it up to it being the time for the weekly appointments.

Once again, I took my son off his school bus and brought him home long enough to visit the loo and pack him a lunch for our adventure. It was a good run in... the ice was melting, the glacier was retreating in spots and we were EARLY for a change. We walked into her office and found it clean and devoid of human life other than a very surprised secretary. It took a few minutes of explanation on both sides to figure out why I was there and not at the clinic; long story short I told her to call ahead and tell the clinic we would be late as we now had to take the bus the other way across town. Grrr!

Aside from being long, that trip was uneventful as well, other than I started to really wheeze and hurt as I walked. Normally I walk at about 3-4.5 mph as a rule, but I'm now down to a slow rolly-waddle with occasional breaks to catch my breath. I followed the instructions given to me by the receptionist and we toddled straight up to the third floor... only to be sent down to the ultrasound clinic to register again. My OB, the doll that she is, baby-sat my son while I took care of that bit of business (including the awkward explanation of why I didn't have my ultrasound requisition with me.) I got back to the third floor to find Quinn and my OB consulting over some of his drawings while a nurse stood by nodding in approval. What can I say, he's a ladies man. She went to quickly consult on a patient, I got a cheese sandwich into the boy and then it was my turn.

Quinn was drawing Mommy a card with roses on it, so I was chatting back and forth to him for the first while. My sonographer explained to me that we wouldn't be doing all the complex measuring today, rather we were checking to see how healthy and happy the babies were. There was a small bit of back and forth between us, but I really wasn't paying much attention until I heard "yeah, there's a couple of infarcts there". [record scratch]

I'm sorry, WHAT?!
 
Seems that Zoe's placenta has a "some" infarcts or areas of dead/scar tissue. I'm not sure how large they are or how much of the placenta is affected. This sometimes happens in normal pregnancies and I know that it happens a lot in Pregnancy Induced Hypertension (PIH) and Interuterine Growth Retardation (IUGR). It also happens near the end of pregnancy as the placenta starts to wind down. With my magic number still at three weeks, I wasn't happy to hear that. I was less happy to hear that Wyatt has dropped well into the pelvis (hence my trouble walking for the last few days) and that his placenta shows signs of starting to begin to break down. Damn... and blast.

I'm lucky that my sense of humour kicked in and I waved it all off as par for the course (either that or I've finally snapped, take your pick). At this point, seriously, what the heck else can I do? As it stands now, we (even more so than before) are going day by day. I monitor the babies daily, doing kick checks and whatnot, I spend even more time resting. I am on weekly trips to the High Risk clinic with weekly ultrasounds. We are still sticking with March 10th as our latest "go" date, but the reality is, I may get the tap next week. I may or may not get 24 hours to get my shit together before (depending on whether it is "planned" or "emergent" in nature). I wouldn't be worried if it wasn't for their little lungs and weight. 37 weeks with twins is good; 35 weeks (or less) is not as good and may mean some time on Bi-pap in the NICU while Mommy goes home.

My blood pressure, thankfully, is a few points down. I laughed and high-fived my OB; after the above news and a few other things this week, it should have been sky-high. I guess that is something in itself.

Today, my day includes remaining calm and dealing with the plumber. Yeah, we have a leak somewhere in the kitchen that is lifting the floor in front of the dishwasher. I guess that too is par for the course...

Putting the "Fat" in "Kung Hei Fat Choy"

[Note:  This is one of the letters that I posted to my friends and family on Facebook when we received Wyatt's inter-utero AVSD diagnosis and learned that there was a 75% chance of him having a chromosomal abnormality, probably Down syndrome.  These are rough, these are raw.  They are painful... and totally didn't have to be if I had any understanding about what DS was in the first place.  It is these early days that prompted me to start Down Wit Dat... to educate and to effect change.  Down syndrome is not something that needs to be grieved.  Ever.  -Jxox]      

After the last visit to the OB/High Risk Ultrasound clinic, I felt it was time to gain a little weight. It didn't hurt that my appetite magically turned on like a faucet either. Despite my previous size, I have had the hardest time gaining weight this time around; these twins are consuming me from the inside out. As you all know I had a really hard time early on with the nausea/vomiting; now the problem is just trying to eat with a stomach that seems to be a) lodged in my throat and b) the size of a small mandarin orange. As it stands now, I am nine (count them, NINE) pounds over my pre-pregnancy weight. It sounds lovely on the surface, but these babies need weight and with maximum four weeks left, they need it fast. So, I hit the pasta... and everything else that wasn't nailed down or at least moving slowly. Sean had bought a few packages of Chinese dumplings/pork buns, etc in the hopes of having them on Chinese New Year, but I ate them. Myself. One pack a night for a week. If you had peeked in my kitchen window at about 10pm, you would have found me drooling over a steaming pot. Say what you like about the nutritional content, but it was food, and fantastic. We have to get more this week... the popcorn and cheese and tomato sandwiches are just not cutting it.

Yesterday found Quinn and I on another "ultrasound adventure". You have to spin these things just right, to justify ripping him off one bus and tossing him on another while force feeding him a sandwich. We were a few minutes late, but that really didn't matter as the clinic was running an hour behind schedule. Keeping him occupied while trying to keep my eyes open was a bit tricky. However, eventually it was our turn and we tromped in.

The OB gave the sonographer her marching orders (with a wink and a smile at me "Did I miss anything, Jennifer?") and took her leave as I laughed and shook my head. Quinn then got to giggle a bit as once again, Mommy got covered in "icing" and we were off. I was ecstatic to learn that Zoe had not only gained weight, but she had rejoined her ORIGINAL growth curve. So at 4lbs even, she is well on her way to not being a NICU baby! Wyatt weighed in at 4.6lbs, so each put on between half and .7 lbs in two weeks. Yay babies (and yay dumplings)!

There was no other news from the ultrasound worth mentioning at this point other than things seem pretty good and I don't look like I'm going into labour just yet. In fact, I've been downgraded: I can see her in the office and continue with my ultrasounds in the regular clinic.

I asked her about my fasting sugar test (which I did January 10th and have been anxiously awaiting the results as I flunked the first one). She had to go look it up, but I was very pleased to hear that it too was normal. So, in the words of the BFF (who happens to be a Diabetic Educator) "If you don't get it now, you probably never will". In my words: "Pass the damn ice cream!".

Of course, we can't get through an appointment without some new drama cropping up and this time it was with me. I've been having some headaches lately (and chalking them up to weather/sinuses/stress) and it seems they could be reflective of my now increasing blood pressure. Now, to be fair, the result is the higher end of normal, but with a really low BP most of the time and up until now in the pregnancy, it could be the beginning of Pregnancy Induced Hypertension which could be very serious. Deathly serious. So, I've been sent home with instructions to RELAX, monitor my BP and if I get any additional symptoms to head directly to L&D. Roger Wilco.

So two new happy things and one more thing to try not to worry about. It's a fair trade, I guess. I'm trying to remain as calm and relaxed as possible; I try to fit in at least two naps a day, put my feet up all the time and try and seek out things that relax me (music, chilling in front of a fire watching TV, my ever faithful bathtub...). It sounds idyllic, I'm sure, but it just gives me more time to think up things that I should do before the babies come. Luckily, I have friends and family that remind me constantly that all will get done in time.

Which is good. Tick tock...