Sunday, January 31, 2010

PeePee TeePee

When you find out you are having a baby boy, most people start joking about pointing it down and avoiding getting a stream of pee in the face. They have those funny little teepee's you can put on to block the stream or just hold the diaper over it... I don't have that problem. In fact, I would love it if Kingsley let out a good stream. He did it once and Jeff and I just watched it in shock.

What he does do though is shoot stuff out his arse like nobodies business. I just got sprayed for the 4th time.  That's just so wrong. If you can visualize: Kingsley gets diapered on his tummy. His diaper and clothes go on backwards so that the snaps on his sleeper can be left open to air out his incision and his diaper is folded down.  So, I take off his diaper and I get his little bum pointing right up at me. Bad place to be. I need a tissue.

Saturday, January 30, 2010

Appointments and Recovery

Kingsley had two appointments yesterday. First he had a head ultrasound. It took over 2 hours to get myself and him ready and out the door - not including anything with the girls.  The whole nursing/cathing/diaper stuff takes forever. But, we got there and the ultrasound was uneventful. I realized how much I adore my Phil&Ted's stroller all over again. King could lie flat in it on his side for transport. Sweet. He slept through the whole appointment.

In the afternoon he had his first paed appointment. Our neuro nurse had already called ahead with the results from the ultrasound - normal! Yay! The appointment wasn't as smooth as the morning one. He cried and rooted the whole time. His back incision is a little infected looking in one spot. Can't keep the poop out!!! :( She gave me some cream for it. Otherwise, he is doing great! Growing and thriving.

My recovery is quite annoying. Whoever claims that a c/s recovery is just like a natural birth recovery is full of crap!!  At this point with both girls births, I was off all medication and feeling totally fine. Right now, I'm still on tylenol every 4 hours around the clock. If I miss it, I feel like I've been stabbed. I can't twist, can't bend too much, can't sit up, can't lift stuff. I can't pick up Cordelia! It's a bizarre feeling. I've never had surgery like this before, so the concept of recovery is foreign.  If we have a fourth child, I will definitely be having a VBAC. Why anyone would choose to have a c/s is beyond me. A baby is MEANT to come out the other way, not this way!

Thursday, January 28, 2010

Life at Home

Two days in and I'm amazed by one thing: the number of dipes and wipes I've gone through!!! The environmentalist in me is dying.  Kingsley has a pretty leaky bum, which apparently is normal for the first few months. It's a bit exhausting at times, to be honest. It beat me up yesterday, but today I'm feeling better. He sleeps most of the time, between pooping and nursing. There are moments where I'm convinced he really is like any other newborn. Except for the catheterizing, pooping, medicine, tummy sleeping, backward clothes/diapers, and big incisions... Otherwise though ;)

His sisters adore him. I was changing his diaper (for the 204th time) and Rachel was watching. King was on his tummy and I was cleaning him upside down. She pointed and asked, "What's that?"  I was like, ah, here we go, the 'Kingsley is different' talk, right? So I reminded her about his incision. She said, "No, that." And I explained the reason for the diaper drape. Again, she said, "No, that." Diaper rash? Nope. Backward diaper? Nope. OK, Rachel, no idea, what are you pointing at?  His scrotum. Totally different 'Kingsley is different' talk than I had in mind. Isn't that the way it is with kids?  We ended up having the talk about catheters today.  She was totally unfazed and watched with no problem. 

Tomorrow he has a follow up head ultrasound to make sure his ventricles aren't growing and the shunt is working. In the afternoon he has his first appointment with the supposedly-amazing paediatrician that I fought to get. My first outings with him! I'm considering bringing a whole bag of diapers.

Tuesday, January 26, 2010

He's Home!!

After 11 days and 2 hours, Kingsley was discharged from the hospital today! YIPPEE!!!

The day started off alright. I got to drop Rachel off at preschool and go visit King by myself (Jeff went to work).  I hung out and listened to the parents of one of his roommates while Kingsley slept.  There are some strange people in this world.

I took Kingsley down to a test... I forget the name already. I swear, I should not have any more children or all of my brain cells may be fried. Anyway, it ended up being done by a girl/woman I went to highschool with, which was kind of cool. They pumped his bladder full and then took pictures of him peeing (which he did - yea!).  He had to be on his back, which irritated the incision and made me anxious.

Kingsley also had his hearing tested finally. His right ear failed (the one with the shunt behind it).  They had to do the brain stem version because he's 'high risk' for something, but when the tester did the usual version in his ear, he passed. But that test was taboo and doesn't count so he'll have to go get his ear tested again. Whatever.

And then after a long slow day of eavesdropping, our neuro nurse finally arrived to tell us Kingsley was sprung! She answered all of our hasty questions about caring for him at home and minutes later we were (okay, I was) getting him dressed and ready to go! The nurses were so sweet, all coming in to say goodbye and see us off. They are so wonderful.

Rachel was beside herself with excitement when she saw us home. Poor thing has been missing me so much. It's been killing me to leave her and Cordelia this week. We had some quick cuddles and photos and then Grandma had the task of calming them down and getting them into bed. Since then, I've been changing 4 poopy diapers and nursing nonstop. It's good to be home.


Monday, January 25, 2010

Day 10

Today we had a visit from the clinic nurse. She did a Cath'ing 101 class for my mom, Jeff's mom and I. Fascinating. ;)  The highlight for me was the Tubey colouring book for Rachel that will teach her all about why her brother needs to be cath'ed. It made me laugh until I hurt, which admittedly doesn't take much these days.  Jeff missed the lesson because he went back to work.

Kingsley and I had a pretty uneventful day otherwise. He had a bit of a fussy afternoon. Now that he's been held he just doesn't want to be in his box anymore, but who can blame him? He nursed pretty much all afternoon and we got a lot of snuggle time.  He got another roommate (4 of them in here now). The parents of one continue to entertain us with their innocence and first-time-parent naivity.  It helps pass the time. 

The biggest excitement was the nurse telling us she sees no reason for us to stay here and Kingsley can come home! We need the neuro to approve it and we're hoping that happens tomorrow. Going to put the carseat in tonight, just in case since that was one thing we didn't get knocked off the list before he was born.  There's a big list of things to get from the pharmacy from his meds (oxybutynin and amoxicillan) to his catheters and all of the accessories that come along with. I also need to figure out what outfit to bring him home in. My little chubbers - they never seem to be able to fit the newborn stuff! I thought for sure he would.  They are talking about him having one last urinary thing tomorrow sometime. I hope that doesn't hold us up another day. 

Friday, January 22, 2010

Day 7

He's a week old today, if you can believe that?? Feels like a minute and a lifetime all at once. But I suppose it feels like that with every new baby!


Kingsley is still doing really well. We're in no man's land of waiting to see what happens next. We've had visits from orthopedics, urology, physio, social work, various nurses with different specialties, and of course his neuro team. He's all monitor/tube free now!

It'll take awhile longer to figure out what's up with his legs/feet. He seems to be able to move his hips and knees, his ankles and toes he moves, but not fully. One foot is stronger than the other. We're not sure yet if he can feel his feet, or how much in his legs. It's difficult to figure out bc he has had IV's and monitors in/on his feet and then the obvious - he can't talk. He seems to improve every day though. The prognosis is still that he will walk, but his right foot for sure will likely need some kind of orthotic, if not both feet. Minor!

His bowel/bladder stuff is what we expected, but still He can void, but doesn't do it fully. We are currently catheterizing him (in/out, not in all the time) every 4 hours and they've started to teach me how to do it for when he comes home. He still needs some more uro follow up to figure it out. He poops endlessly, which is good and bad. Good that he doesn't need help, bad that he can't control it at all and it makes his bum sooooo irritated. He's going to hate me one day for telling people all of this, isn't he?

Otherwise, he is perfection. The nurses are all in love with him, but how could you not be? He's bf'ing like a pro! All my worries for nothing, this boy loves his milk. He's also allowed to be held and snuggled now, which is absolutely blissful. I finally get to 'be his mom' and start changing diapers, bathing him, feeding him, soothing him when he's upset, rocking him to sleep... All the things you take for granted when you get to bring your baby home right away! I loooove it.

Right now I feel like I'm living a dual life. It's rough being split in two between home and the hospital. If I sit for longer than 2 minutes I fall asleep, no matter who is talking to me. Whoever said recovering from a c/s was just as easy as a natural birth was soooo wrong. When I laugh, sneeze, cough, turn, or sit up I feel like I'm being stabbed in the gut. No idea when this pain is going to end, but OMG it hurts. Still loving the tylenol. The antibiotics are so disgusting.
He comes home sometime this week. They were saying early in the week, now they're saying mid-week... no idea when it'll happen, but I can't wait!!

Thursday, January 21, 2010

Day 6

Last night Jeff informed me that my stomach looked disgusting. Apparently there is something nasty happening above my incision that I haven't been able to see. He's right, I checked. I asked one of Kingsley's nurses about it today and she said I should go to emerg. Great fun! Turns out it may or may not be a staph infection, but probably. They took a swab and gave me some antibiotics. Lovely.

Today was a rough day. I don't know why exactly, but today things just seemed hard. Sometimes, he seems like a little baby with a few problems. Sometimes it feels like the SB trumps everything else. I held him for a long time today and I gave him to Jeff to hold for a bit and when I put him back in his box he had pooped and it had gotten up to his incision and his incision was irritated... it felt like my mom-instincts were all wrong. How the hell am I going to do this?

Tuesday, January 19, 2010

Day 4

My little man is doing so well. Honestly, you would not believe what he has been through unless you saw his battle scars because he is just awesome. I've been discharged so I'm spending my time now just sitting beside him watching him sleep. I could do this all day! ... actually, I probably will.


They've got him on a few monitors still, but nothing on his beautiful face anymore. He has been taking formula and now *drum roll* breast milk! YAY! When I'm here, I get to try and feed him before giving him a bottle. So far, he doesn't quite know what to do with it in his mouth and my milk isn't strong enough to give him the idea, but we're going to figure it out eventually.

As for the long term stuff... right now they are cath'ing him every 4 hours. I saw how it was done and it's not as scary as I thought. Most things aren't as scary once they're applied to my little angel though. He just makes things seem bareable. We're almost certain that he does have the L5 stuff and that his limitations begin at S1. The neuro said he'll walk for sure, just with braces likely. He has movement in his toes and some in his ankle/foot, but not full movement we don't think and possibly not feeling.

Monday, January 18, 2010

Day 3

He had his shunt put in tonight. It was the scariest 2 hours of my life I think. I know that the back surgery was just as serious, but either the lack of drugs or the horror stories I've made the mistake of reading online made this much much worse.  His neuro decided that it was inevitable and we may as well get it done now.  He had an u/s on his head this morning which had confirmed that the ventricles had indeed been growing and were the reason for his head growth.


I'm so exhausted. I don't want to repeat today.

Sunday, January 17, 2010

Day 2

He's doing so well. He's healing well and getting more alert. He moves around a lot and shows us a little personality now. He recognizes my and Jeff's voice and calms right down when we're in there touching him and talking to him if he's upset. He's off the IV and is being fed formula until my milk comes in so that they don't have to re-poke him. I have gotten to 'hold' him 3 times and twice try to get him to latch on. It's quite awkward, and nothing much happens but we're trying!

Tomorrow he's having an u/s on his head bc it's getting bigger. He'll likely get his shunt in the next couple of days whenever the OR can fit him in. Then we just wait for him to heal so we can take him home. He should be home with me at the end of this week or early next week. I am so excited for that!

Saturday, January 16, 2010

Day 1

He's had quite the day. He was quite sad looking this morning with his respirator still in and his face all puffy from being on his tummy, but he recovered a bit by noon and had the tubes taken out. Yea! He also had to be cath'ed overnight bc he wasn't pooping/peeing after his surgery. This wasn't happy news, but not unexpected.


When we went up to see him just after lunch the nurses floored me by asking if I wanted to hold him! What a question!! He got to lay on a pillow on my lap. I couldn't REALLY hold him, but got to do a half snuggle and that was the most delicious thing ever. He seemed quite happy about it as well.

Rachel and Cordelia came to visit him and were totally fine with his wires and monitors. They have nothing to compare though, so perhaps they think this is what happens to all babies!

This evening, they moved him from the PCCU to the 7th floor, which means he doesn't need as close monitoring anymore. What a trooper! We didn't expect he'd move this fast! As soon as we got up there to see his new digs, I discovered he had pooped!! All on his own! Let's hope this is a sign of things to come.

His IV was causing him problems, so they took it out and couldn't find another good place that he'd tolerate it so they are going to try without for a while. This means that they have to start feeding him formula in a bottle, which sucks. But I am determined that either pumping will work or soon enough he'll be able to have the real deal. So far, I'm producing zilch. All in time.

The last thing is that his head circum. has gone up a bit. They're going to do an u/s on Monday. He'll likely need a shunt, which is also not unexpected, but still sucks a bit.


He's Out!

He is out of surgery. It lasted just over 2 hours. The neurosurgeon said it went perfectly. His back (or actually, his little bum crack) looks better than any other the nurses have apparently seen. They all say it's the best one. Well, of course it is! ;) It's a nice neat line of stitches a couple inches long. They have told us he's vitals are strong and he's been perfectly stable. He is intubated but they think he'll be doing well enough that it'll be out tomorrow morning. He's on a bit of morphine right now for the pain.


Jeff and I got to spend about an hour and a half with him after his surgery. He's just so strong and beautiful! We couldn't be more happy about how everything has been going. Going to try and get some sleep now so we can be there in the morning when he wakes up and they take some of his tubes and stuff off.

Friday, January 15, 2010

He's Here!!

I had an ultrasound and OB appointment this morning. He did stellar on his biophysical profile (showing us that he could move and practice breathing and all of that). Some where between the u/s and the OB getting to me I started having contractions. Just those mild barely noticeable ones, but for those of you who recall how Rachel and Cordelia came into the world, that means go-time. I begrudgingly let the OB know. She decided I should head over to the hospital and that today would be the day.


I arrived there around 1:30. Jeff met me there. I got all strapped up. Just after 3pm my OB arrived and they took me to the OR. The c/s wasn't as bad as the horror stories in my mind. He was born at 3:58pm. My amazing OB immediately brought him to me to see. He was covered in vernix to the point where we couldn't even see anything on his back. They took him to the warm room to get cleaned up while I was stitched up. I could hear him wailing his little heart out for Jeff. He weighed in at 7lbs13.3oz. Our neurosurgeon checked him out and came to let me know that he had movement in his hips and knees, but not sure about his ankles. One foot seemed sort of curved but was flexible (i.e. not a club foot). We'll see what that means down the road.

After he was cleaned up my amazing OB insisted he be brought to see me in his little box. I could just barely see his hairy little back and chubby cheeks. He's gorgeous ;) They wheeled me downstairs to recovery and ta-da! There was my beauty waiting for me. He joined me in my room for about 15 minutes so Jeff and I could ooh and aww over his perfection, hold his hand, and tell him how amazing he is. He went to the PCCU (paediatric critical care unit) where he'll be staying for the next little while. Jeff went down to visit him while I was up in my new room in the mom/baby wing. Once I could move enough, I got to go visit (at about 8:30). We hung out for a bit and then at 9pm the OR called and said his turn had come. It's currently 10pm and he is in surgery to close his back.

I'm doing fine. Nervous about how he is doing and anxious for him to get out so we can see him again. He is truly amazing.


Thursday, January 14, 2010

Play Dates and Mom Dates

I'm trying to get in a hundred things before Monday.  Today the girls had 2 final playdates with friends of ours before the baby comes and we go into germ lockdown. I also finally got to meet another mom of an SB baby! Meeting her was amazing.  Her daughter was born this past summer, so she's just a few months ahead of me in going through all of this.  She showed me pictures of her time in the hospital, told me about her experience with the neuro team and the SB team at TVCC, and basically made me feel like I'm not the only one in the world going through this. It was awesome!  I feel much more prepared for this whole experience.

Tomorrow I have my last OB appointment.

4 more days until he's born!

Tuesday, January 12, 2010

BCBA!

I found out today that I passed my BCBA recertification exam! YAY!!! Now I can forget about work for awhile longer. :)

Sunday, January 10, 2010

Mad Planning

Now that we have a date and it's so close, I'm trying to plan everything.  I have meal plans and grocery lists set up. The nanny will be with the girls during the day and I'm coordinating Grandparent schedules to cover the girls in the afternoon. I have no idea when/if I'll come home or if I'll want to stay there...

Friday with the u/s and OB and then preadmit appointment (the meeting with the hospital before surgery where you get all the 411 and sign stuff) was bruttal for some reason. I didn't get any bad news, but spent the whole time trying not to cry.  Mostly the reality of not seeing him or touching him or talking to him or anything between when he is born and when he goes for surgery was upsetting. How is he supposed to know I'm there? Won't he be absolutely terrified? I've been so focused on my surgery and his surgery, that my own recovery in the immediate sense never occured to me. My surgery will be another 40min after he's out, then I lie in recovery for 2 hours, then I'm stuck in bed. I won't be able to see him until I can sit in a wheelchair, which the nurse guessed would be that evening. How come I never realized that I'd be in huge pain and drugged? Just more stuff I have to accept and not dwell on.

Friday, January 8, 2010

His Birth Day!

I had my OB appointment today and his birth date is going to be... January 18! I'm scheduled for 10:30am with my OB; I have to be there at 8:30am for prep and whatever.  He is going to have his back closure surgery sometime that afternoon or evening. It's so real now! I have to pack my bags and start getting ready. I can't believe he'll be here in 10 days.

Wednesday, January 6, 2010

Glee

I've been feeling quite spoiled lately. We have our nanny here during the day to help with the girls and keep the house tidy and cook meals since I'm supposed to be taking it easy and all of that. She's going to be with us until I'm recovered from my c/s.  I spend my days hanging out with the girls and watching episodes of my new favourite show, Glee. Seriously, nothing makes me happier right now. :)

I've been calling the OB's office every day. They haven't heard yet from neuro about a date. I have an appointment on Friday.

Saturday, January 2, 2010

New Years...

We're on the other side! This is wild. A few more days and we should be getting a birthdate for this little man.
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