Cheers to the New Year

It is amazing how much can change over the course of a year. Last New Years Eve I was working at a bar, living in the dorms, and hooking up with one of my coworkers. Now only one year later, I am home in pajama pants, watching How I Met Your Mother and about to crack open a bottle of sparkling juice with my love, Caleb, while our newborn son sleeps.

I think back to those days, a short 365 days ago, and I have to smile. I was so young, yet I felt like an old soul. I had some rough times, some of the lowest of my life, but until this past week I don’t think I really understood the concept of heartache and the pain of loss.

12 days ago, my son was born, and it felt like that first week was just one extremely long, emotionally wearing day. We were told that our son would not live more than a day or two off of his tubes and IVs, and we had resigned ourselves to the fact that we had to say goodbye. But as you all know, Noah is a fighter. He decided to prove them wrong, and 10 days after he was born, we were finally able to go home.

When I say “the pain of loss”, it was more in a figurative sense. Being strong enough to say goodbye made me grow up more in one day than I think I have in the last 5 years of my life. Miraculously, I didn’t have to actually go through that pain in real time, because as you all know, and as I previously stated….my son is a fighter.

So now, life is good. We are “cautiously optimistic”. Noah is becoming more alert every day, and the question remains as to whether his seizures will come back once his meds completely wear off. The doctors have literally no idea how the brain damage will present itself as he grows up.

Tonight is New Years Eve, and as I usher in 2011, I am truly happy, both generally and in the sense that I am beyond ecstatic that we didn’t have to spend both Christmas AND New Years in Edmonton, a 6 hour drive away from home.

Happy New Year 🙂

Over the river…

I felt the need to update my blog today simply because SO much has happened in the 6 days since I wrote my last one.

When I last wrote, we had literally no hope at all. Over the couple of days following “the big news”, we finished things up as best we could and came to accept (as much as we really could) that my baby would pass away.

So on Christmas Eve, we had a lady come in and do foot and hand impressions, and we had the hospital photographer come in and take absolutely beautiful pictures of Noah for us. Caleb’s dad said a prayer, and I had a chaplin come in to give a blessing. My favorite part of what she said was that Noah could have died in utero, but he decided that he wanted to come out so he could meet us. Of course it made me bawl (well, what doesn’t these days!), but it was very nicely worded, and rather comforting.

At about 5 pm, Noah was taken off all of his tubes, and transported to our hostel room, en suite from the NICU. The photographer took some pictures of him de-tubed, and then left. Caleb and I took our shirts off and just laid with our son, skin-to-skin. We had no idea how long he’d hold on for, so we wanted every second to count, and we wanted it just to be us.

A few days passed. Noah held strong. We didn’t leave the room for 3 days straight, we just went down the hall to the bathroom and that was it. Luckily my parents and sister made it in one piece, and Caleb’s parents and sister were here too, so they took care of bringing us food. Neither of us could stand to leave the room for longer than it took to go to the bathroom. We were literally expecting Noah to stop breathing at any moment. The first night was the most terrifying. We didn’t even consciously fall asleep, it just happened, and we were so relieved that Noah didn’t pass away while we slept.

That night I had a dream that my Grandpa met Noah. My Grandpa died last December, and his funeral anniversary was my due date. The best part was that the Grandpa in my dream was the Grandpa that I remember….before he got really sick, and when he used to still live out at the acreage (he got moved to an old folk’s home about a year before he passed) and bake his delicious homemade bread. That’s the Grandpa that I like to remember, and that’s the Grandpa that met Noah. It was very comforting.

Then Monday (December 27) rolled around. The week before, the doctor had recommended that we take him off sooner rather than later, since she said that if we waited until Monday (which was the earliest possible day that Grande Prairie could take him, so that we could have him pass away at home with us) he’d likely be breathing on his own (he had been on ventilators). Basically she said that it would be extending his suffering, so we had decided to take him off on Christmas Eve, the day after she told us that.

We had a visit from another doctor, and during his examination of Noah, he was incredibly surprised to find that Noah had a sucking reflex. So then he suggested that we try feeding him (he had yet to be actually fed since birth….he had been on nutrition IVs, and that had been removed along with all of his other tubes on Christmas Eve), since he anticipated that we may experience vast disapproval from the palative care nurses we may come in contact with in Grande Prairie.

You may think us heartless, but please keep in mind that he wasn’t expected to even survive that first day off the tubes. It was an incredibly hard decision, but based on everything that the doctors had told us, it would have just extended his suffering.

So with the discovery of the sucking reflex, we tried a bottle. And against all odds, Noah sucked it back like he’d just been waiting to show us what he could do. So then we started him on a 3 hour feed schedule, mixing what little breast milk I had with formula. That turned out to be too close together, so we extended it to 4 hours, and he’s been good with that so far.

Today we had a conversation with a pediatrician. Noah happened to be awake while she was there, and lo and behold, our baby suddenly had a bit of a startle reflex!

She is a bit concerned with his legs since they are stuck in a “froggy” position, but the most wonderful thing happened…..while she was working his legs trying to get them to loosen……

HE. CRIED.

We couldn’t believe it!! We hadn’t heard him cry since we had left Grande Prairie a week ago. It’s funny that I was SO happy to hear my child cry. 🙂

They are now sending him for another EEG tomorrow, because they may have been wrong with his prognosis. The doctor had said that he was a “3” on the brain damage scale*, but now they think he may be a “2”, and the meds that he had been on had clouded his result.

The meds have a half-life of 100 hours (so, a very long time), so the question remains as to how much more Noah will change as the meds steadily wear off further.

She did say that sometimes seizures show up early and then never show up again, but obviously we’ll have no idea if this is the case for Noah until an extended amount of time has passed.

So we’ve gotten the go-ahead to take our lovely baby home tomorrow after he has his EEG. We get to drive him down, and we borrowed a car seat from a family friend of Caleb’s since ours is at home. We’re getting a referral to a pediatrician in Grande Prairie, and we’ll have to go see him within a week, just so that he has an idea of what Noah’s “baseline” is, and to get a better understanding of where he eventually goes.

There will still be damage, but as of this moment we have no idea how extensive it’ll be. The interesting thing is that as far as modern technology has gone, the brain is still a mystery in a lot of ways.

So right now, there is some happiness. Or as Caleb’s FB status said yesterday, “a glimmer of hope in the dark is a blinding light.”

We’re taking it one day at a time. We’re not out of the woods yet, but we’re certainly over the river.

“It bears all things, believes all things, hopes all things, endures all things. Love never fails.” 1 Cor. 13:4.

________________

* She explained the brain damage scale to us like this:

1- high blood pressure, hyper all the time

2- the opposite, lethargic and kind of slow

3- comatose, “catastrophic” damage [Noah’s original prognosis]

___________________

We’d like to extend a gigantic THANK YOU to everyone for their love, support, and prayers these last few days. You have no idea how much Caleb, Noah, and I appreciate it. ❤

And the world crashes down…

I was hoping that my new entry would be about Noah’s birth story and how we’re at home and learning about each other.

However, that’s not the hand we were dealt these past few days.

Noah James was born on December 19, 2010 at 7:54 pm. A healthy 8lbs 10 oz and 20.5″ long. My labor was super fast….I got induced at around 10:00 am on Sunday, sent home by 12:30, then the contractions started hard and fast and we were back at the hospital at around 4 pm, 3 cm dilated and 100% effaced. I got a shot of morphine to take the edge off and we were admitted. An hour and a half later I asked for an epidural, only to find that I was already 10 cm, and it was almost time to push. I pushed for an hour, and then at 7:54 pm, Mr Noah finally joined us on the outside.

Then everything started. He wasn’t breathing right away (he had the cord wrapped around his neck), so they immediately clamped and cut the cord and put him on the side table, and tried to resescitate him. 3 minutes later, he still hadn’t cried, so they wheeled him away to the NICU. Caleb went with him, while my mom stayed with me while I got stitched up and checked.

So I went up to the NICU about an hour later. My lovely baby boy was on this back tray, all hooked up to an IV and a CPAP. Caleb and I spent the next few hours saying hello.

They were worried because Noah had a couple holes in his lungs (they think it was the bag thing they had used to resescitate him at birth), but he got downgraded from a CPAP to a simple little nose prong thing, but he was breathing room air.

On Monday night (so, December 20) they moved him to his own little crib in the main part of the NICU.

On Tuesday morning when we went to visit him (they were calling me in every 3 hours to try to pump breast milk for him, so this was around 5 am), we wrote on the board next to his crib and I was thinking about how I wanted to decorate the board with some tinsel or something for Christmas, and both Caleb and I got to have some skin-to-skin cuddles. Noah had started this weird thing where he’d hold his breath for apparently no reason, but if we stroked him and woke him up, he’d start breathing again. Then at 7 we decided to go downstairs for some breakfast, and the nurse told me to come back at 8:30 to try to pump again.

We were a bit late coming up, the main elevator that I usually used to get upstairs was out so I had to walk a roundabout way up to the NICU.

So we got there at about 8:45…..only to find Noah on the back tray again, and a couple nurses and doctors swarming him. It turns out that he had had a seizure a few minutes before we got there, and they were sending him to the Stollery Children’s Hospital in Edmonton (a 6 hour drive away) for an MRI.

What followed was a giant clusterfuck of trying to get everything together so that we could drive up there and meet him at the hospital. I talked to nurses and my doctor so I could get discharged, I talked to a social worker who hooked us up with a place at the Stollery in their hostel room for Tuesday night, and then a spot at Ronald McDonald House starting on Wednesday. Then Caleb and I said goodbye to Noah, and we headed home to drop everything off and re-pack and start heading to Edmonton.

Noah got airlifted at around 4 pm, and he was in the NICU at the Stollery by 7.

Caleb’s sister and Dad drove up too, in a seperate vehicle.

Caleb and I made it to Edmonton in pretty good time, but then we got completely turned around and it took us over an hour to finally FIND Stollery. So we finally got up to the NICU at around 11 pm.

We talked to the nurse practitioner, and basically, he was on anti-seizure meds, but he was breathing ok. However, his intestines weren’t working properly, so he isn’t able to breast feed right now.

Eventually we went to bed, and after a lot of crying we were finally able to fall asleep. At that point we hadn’t had any sleep for 24 hours.

So this morning I woke up at around 9, on a solid 4 hours of sleep. I contemplating saying hello to Mr Baby, but then this intercom came on (it rings throughout the whole area) that says “CODE BLUE, 3A3”. It terrified me that I may come into the room to see a whole bunch of nurses and doctors crowded around Noah, so I instead stayed in my room.

Once Caleb was up, we went and visited Noah.

This afternoon we had a meeting with a social worker, who asked us about our histories, where we lived, our jobs, etc.

Then we were joined by a doctor and a team of nurses, who were there to tell us their findings.

They were in 0ne word, terrible.

It turns out that Noah is “catastrophically” brain dead. His brain waves are at zero, except for when he has his seizures. He’s breathing room air, but not fast enough, so a ventilator is breathing for him. He’s under massive doses of anti-seizure meds, so he’s basically in an asleep-like state 24/7. He doesn’t have a sucking or grabbing reflex (because of the meds that are suppressing his seizures).

What this means is that long term, Noah will likely never talk or walk or eat on his own. He is severely handicapped, and will have to basically live in the hospital for the rest of his life.

The doctor said that we have two options. 1) We take him off and “let nature do it’s course”, and he’ll pass away….or 2) He lives on ventilators for the rest of his life, and he likely won’t live to be 12 years old.

They’re still going to do a MRI, but basically it is just a formality. Because really, there is no choice. We have to make that choice that every parent dreads. It would be selfish to keep him around when his quality of life would be so poor.

My parents are driving up tomorrow, and we’re going to see if Noah can get shipped up to Grande Prairie for when they unplug him. I need to ask the doctor how long she thinks he’ll have. I’d prefer it if we could bring him home and have him pass away there, but I don’t want to have him die in transport.

I don’t remember what I thought “the worst day of my life” was, but today definitely takes that trophy.

I don’t even know what to do with myself anymore. I’ve spent this entire day crying and wondering WHY and hating life.

I just don’t understand. The doctor says that it was an “acute” thing, so in her words it is “very very bad luck”. There is literally nothing that I could have done differently. It’s just one of those things where it just HAPPENS.

I don’t even know…..”staying positive” literally means nothing now because what is there to stay positive about? These last 9 months have been so anticlimactic….because after all the worry, the pain, the planning…….my baby never gets to come home.

Getting Induced! (AHHH!!)

So today I am getting induced. We had a scare on Friday night that ended up in us going up to the hospital (everything is fine though!), and when she checked me, I mentioned that I was getting induced today, and she said that my cervix is pretty thin, so it probably wouldn’t take much. I was apparently about 1 cm dilated and 70% effaced, just like I was at my doctor’s appointment on Monday.

In a way, being induced makes me sad. It’s almost like my body has “failed” at doing what is one of the most natural things a woman’s body does: give birth. Call me a romantic, but I always imagined that I’d wake up in the middle of the night (you know, because it’s more dramatic that way) with my water broken and contractions rolling on their own. I wanted to have a natural, vaginal birth. But with how big he’s looking, there doesn’t seem to be much hope of that. Coupled with the fact that I’m probably going to be put on Pitocin, it lowers the chances even more.

In another way, it’s exciting and good, because it allows me to basically have a “baby appointment”. I can shower, shave, have everything together, etc, and I come in at a certain time, and things roll on. Then again, I know that it’s not going to be like,

8:00 Apply gel

9:30 Contractions start

….

6:00 BABY!

I know that we’ll still be running on the baby’s schedule….and this little jigger doesn’t seem to be in any hurry at all!

Well I am nervous beyond words….I mean, after months of waiting, I know that I will FINALLY meet my baby either today or early tomorrow (God forbid if it takes longer than that! Ugh!). That’s scary!

But I have to go now….fingers crossed!

 

Wanted: Baby!

So I am officially 4 days overdue…..STILL no baby!

Sigh….and of course my extended hospital visit on Tuesday has me super paranoid….I had a dream last night that he was stillborn :/ Scary!

My mother thinks that tomorrow is the day…..I certainly hope so! We finally have the crib mattress and now everything is washed, the baby clothes are all finally put away, the crib and the bassinet both have bedding in them….now they just need a baby! And all our hospital bags are finally packed, our room is clean so we actually have room to put the bassinet in there, lol.

Caleb: “I like that we have the house clean AFTER the due date, ahahaha”

Me: “Well, better late than never!”

And ain’t that the truth. No one’s ever been pregnant forever…..or so I have to keep telling myself, haha.

*Thinking baby thoughts*

………WeeeeeWoooooWeeeeeWooooo………(because baby thoughts apparently sound like an ambulance 😛 )

Yeah, he’s a sweetheart :)

So I creeped and found Caleb’s LiveJournal….this is an entry from January 24th titled: “girl crazy?”. It made me smile 🙂

so i spent friday night partying with college girls w00t 😄
I like one of them, her name is Olivia, which is only slightly weird because my sister’s name is olivia. but she’s like only 19 well 19 0n February 11. she’s a lot of fun, but i’m not sure i could see us going out, oddly enough 9 years feels like a lot. I’m 28 now, holy jeez it seems old compared to 19. I figure me and Olivia could be good friends though, she sat beside me and held my hand around her shoulder well me, her, and shelby drove around. I don’t wanna read anything into it because, she was drunk and I don’t wanna have my hopes completely dashed. But it felt like a girl anime we’re the two main characters have a thing for each other but they never really do anything. I was too happy to sleep last night lol I did get some sleep around 5am – 12:30pm though.
Is it weird that the thing I like most about her is being excited to see her? I’m such a goofball.
I’ll shut up now and go clean the house.

🙂

Come on, baby!

Today is officially “THE” day. The day that Caleb and I have been looking forward to since the first doctor’s visit back in April. It’s……THE DUE DATE.

But no baby yet.

I really should blame myself….my Fertile Myrtle-ness has obviously given him a delightfully comfortable womb to live in for the last 40 weeks.

Well guess what, Baby…..it’s EVICTION DAY!

Hurry up and meet us, we can’t wait any longer! 🙂

Are you going to have Daddy’s nose? The “Herzog” feet? Mommy’s eyes? We want to know! The anticipation is killing us!

Well, we do know that you will be here within the next 10 days FOR SURE. Mommy would certainly appreciate not having to be induced, so if you could make that a reality, that would be amazing.

Your Daddy and Grandma both think you’re coming on the 17th. Mommy could live with that.

SO get on it, Baby!

See you on the other side!

Love, Mom ♡