Ooooo .....Not So Fast!

Yep there has been a delay and it really isn't such a bad thing. The occupational therapists (OT)want some more time focusing on Alistair's hand splints and particularly his latch and suck. OT just feel that one more week would put everything ahead that much more. I'm happy with that really as I know the team down here and feel that they have the experience working with CDH kids in this situation. Plus there is an OT that specializes solely in hand splints for kids and she truly is incredible at it. So now they are talking about the end of next week. So heres hoping we still have a bed up there by then. But whatever shall be shall be! It definitely is a transition going for a room of 12 critical kids to your very own spot. Of course it should be better right?! Well by the end of today it was, but I definitely had to get use to the idea as the original room was a very supportive social busy environment with several eyes upon Alistair, where now its just the two of us with someone watching a telemetry screen from outside the room. So this is getting a lot more like reality and as I said by the end of the day I was in love with the idea and felt it a priviledge to have our own space. It just goes to show how quikly one feels supported in an institutionalized setting...... Anyhow the OT came in today and was able to bottle feed Alistair 13ml with a good suck. So bonus! Why not the boob you ask?! Well they don't believe in the nipple confusion idea and OT just wanted to assess his sucking reflexes which I guess is easier with the bottle. Anyhow Megan the OT will be in tomorrow to work with us with breast feeding. He definitely gets tuckered out so its a once a day thing at the moment..... He sure likes the concept of the boob but he doesn't known what to do with it quite yet. It will take a lot of persistence on my part to get him to the stage of actually getting a feed out of it. He does get in there and root around and he loves to scratch the heck out of my chest with his ever growing claw like nails! After a bit he seems to get a bit P.O'd that he's not having the success he'd like from the dang thing! .....Well now that we don't have to race out of here it will allow Jason and I to enjoy the 3 nights he'll be down. It will even be all the better with a private room so we can just be as a family for once. Well you even have the luck of hearing Alistair rootytoot on this video! LOL He's definitely a tootin machine. Not sure what parent he got that from........ K Enjoy There People! Cheers Julie

Holy Schiznat!

T

Well when the ball gets rolling it sure gets momentum! I didn't have to guess any longer about whether it would be sooner or later before we headed north. They're hoping to get us up to Pr George THIS FRIDAY! WOO HOOO! Once there is a bed available and the kid is appropriate to transfer they try to move as quick as possible so they don't loose the bed. In addition, this NICU can always use relief. So today Alistair got to see the genetic councellors. That was quite interesting they definitely exam every little crease and bump that exists. There is a handful of conditions that are related to CDH and they just want to rule out any correlation. There didn't seem to be any major red flags. One thing I found interesting, but they didn't say that it was necessarily Alistair's situation, was that sometimes several irregularities can stem from a pregnancy originally being a set of twins. There is then the idea that for whatever reason one twin didn't make it early in the pregnancy and the result was absorbed by the womb. Then this material can cause clots which could have interrupted the development at a certain period during the pregnancy hence causing CDH, contractures etc.... Again they said they weren't necessarily saying that this was the case with Alistair but situations like this do occur. Anyhow found that interesting. Another big thing today was i arrived and they had taken Alistair off high flow oxygen and put him on only 25cc(which is about as low as one can go) of regular oxygen. So he's just getting O2 without the pressure behind it which was to help him expand his lungs. They even tried him completely without for a good hour but he just required a little wiff of O2 yet. The third big thing of the day was Alistair is officially over SEVEN POUNDS! So he's definitely a big boy now. O and lastly they transfered us to another area and gave us a private room so to give us privacy so that we can work on breast feeding before heading out. So lots and lots of changes. Anyhow just because they hope to get us north on Friday doesn't mean its going to happen. They have only so many neonatal transfer teams in the province and we are low priority. So if someone critical needs a flight we are bumped. But whatever the case all very exciting. So of course Jason will be flying one way and I'll be either flying or driving north with Jason. We'll see.

K well with all these big changes I suddenly realized I better get organized here to head out in the last min. So just did a bunch of cleaning. yahoo my favorite past time....unhuh!
K chat again soon!
Cheers Julie
ps the white board was by our bed and mom drew the pic. I also came to the hosp today and found the pics down up by the night nurse. nice!

Skin to Skin

Well that mobile definitely paid off. I shouldn't be surprised after being mandated by a well seasoned nurse. She knew what she was talking about. Ya I was quite amazed really how intently he watched the thing go around and around. Luckily it doesn't sound to painful either ( I have a thing with noisy toys...)Genetics didn't make it today but the occupational therapists came by and refitted Alistairs splints. They definitely put in a lot of attention to them. His middle fingers were contracted to about 90 deg and now they open about 140 deg. So definitely progress. Its like they have to stretch the skin on the palm of his hand as it grew short. Plus the knuckles are a bit stiff. They figure in a year of splints and stretching he should have regular hands. So thats a bonus. They also got talking about getting Alistair into breast feeding. So they figured a good start would be some skin to skin and an introduction to the faucet of the milk maker. I had to pump off first so I'd be "dry". Well flip! I thought I was reducing the supply .....8 bottles later or 560mls later........yes like my bud Sandra said if I were a cow they'd genetically clone me! Anyhooo Alistair seemed quite interested gumming away which is a darn good start considering the situation he's been through. So a couple times a day and he may just get the hang of it all! He had enough after 10min and then we did some skin to skin. Don't know why but the ol' tear ducts wanted to flow but I managed to hold back. Definitely another lovely moment in motherhood. He just seemed to be content using my milk jugs as pillows! lol ...
K enjoy the pics
Julie

Mandated to get Mobile

Another day in the life of Alistair MacMillan. Today a nurse I asked to primary for us pretty near mandated that I get my butt out and buy a mobile for the boy! So I took her advice and its quite nice really. Just makes things feel a little less institutionalized. In addition, some nurses like BJ make it a significant part of their job just to make a really nice gender appropriate bedding. This just makes it all the more extra special......Genetics is coming tomorrow for an assessment to do an overview of Alistair so just the thought of this has put me a bit on edge today. But as Jason would say "Slow down!" So we will see..... We did find out though that there is a bed being saved for us at the NICU in Pr. George so thats pretty exciting. They may actually send us there sooner than later! Woohoo! As much as this is a very nice arrangement, waking up in a more familiar environment only 5 hours from Jason would be wonderful. Who knows we may even have to put his plane ticket on credit. But again I can hear my man telling me to "slow down" again!

Well I had better hit the hay!
Cheers Julie

Bathing Beauty

Hello! So another hot day down this way..... Today I got to see Alistair get truely pissed off for about 20min. He was literally spitting mad as mama caught his little belly button stump on the ECG cords and voila his stump came off. Oops! I had one PO'd little munchkin for a bit. It made me think of one of his first days when he was still sedated and paralyzed and i looked out of the private room and saw this little babe crying up a storm and i thought "O if I could just see Alistair cry!" Well today I surly did and I'll tell you what the reflexion definitely made me appreciate it. He definitely is fiesty when he wants to be. We're getting into the daily bath routine now and he definitely needed it after his melt down as he was just perspiring after that. So once he had calmed down for a bit I got him in the bath. Does he ever just mellow. If you have the ability to see the videos you'll see how mellow he truly gets. Its bizzare. Its almost like when one puts a hamster on its back and they konk out. He just loves the water poured over his little body. But once he's brought out he stays mellow but beccomes wide awake and checks out his little world. I definitely enjoy this.

Well I promised myself I'd get to bed before midnight tonight as I'm attempting to get in a somewhat normal routine and going to bed at 2 or 3 in the morning just doesn't set one into any type of normal routine. So even if I'm in bed by midnight that'll be a small feat for this lady.

K Hope all is having a great long weekend and so glad Cousin Jess got home safely after being in the middle of a hurricane at the Big Valley Jamborie! Yikes.

Cheers till next time!
Julie

Visitor Coming

Not a whole lot to say today except JASON's COMING BACK DOWN! Whoop Whoop! Mom and son are estatic! He's flying down next Friday and back on Monday. You only see your son grow up once. Yep so yah that is the GREAT & SUPER news! I can't believe how much Alistair changes daily so its nice Jason gets to see him again before we get transfered north. Another one of those spur of the moment decisions these MacMillans decided to make. I've had a few people ask how I'm doing mentally etc... And all I can say is GREAT! No this girl missed the bluey boat THANK GOD as there has been enough on the platter as it is. But ya I feel great. I just couldn't be any happier due to Alistairs progress and overll state. AND yes ...i'm taking time for me too. Don't you guys worry! (thats to the nursing buddies) For example: I went for a swim this morning and sat out in the sunshine later today and had a vanilla bean latte as I read one of Barack Obamas books AND I even dipped into a glass of red wine tonight! (and no I'm not giving alcohol infused breast milk to Alistair!) I have so much stocked up I could chuck everything I pump for a couple months and Alistair would still have breast milk to consume. Well if you check out the videos you'll see Alistair is avidly back on the soother. They figure he was just getting phlegm built up in the back of his throat due to reflux and he wasn't swallowing it. So then when I stuck the soother in he'd gag. I was worried he may acquire an aversion to the whole soother/nipple concept but thankfully not! K obviously I had more to say then expected. Anyhow must get to bed!\ Cheers Julie

Threatening 7 lbs!

Well our little guy is threatening to hit 7 lbs here sooner than later. Tonight he was weighed in at 6 lbs 9 oz. So he's still on the up and up. They also decreased the amount of pressure going into his lungs. So he is now at the minimum flow for high flow nasal prongs. So he's still making steps in the right direction. I've posted more pics today. The one of the lady with Alistair is Betty. She is one of the charge nurses who was unfortunately for us going on holidays today for 3 weeks. Absolutely an incredible woman/nurse. She grew up in India and speaks punjabi, chinese, and english. In addition, she has been working in the NICU for TWENTY-ONE years! She sure brings a sense of stability to the place. Loved having her present. Also just a very jovial and humourous woman. She remembers the days when they would weigh the kids on slings that attached to "meat hooks". The other pic shows you how Alistair can give the peace sign without even trying. The splints are making headway in correcting all that. The amount of focus that solely goes into his fingers in this place is unreal. Interestingly enough on rounds the other day it was the physiotherapist that recommended that Alistair have a full neurological work up just to ensure that he has no other concerns for his future. There is no red flags in this regard but they feel he should be checked just to catch something early if there is a concern. Some of this entails blood work that has to be sent off to France and England which I found interesting. Well this girl is off to bed once again. Have a great long weekend for those of you here in the Big Beautiful British Columbia. Cheers Julie