Weight Gain!

Well I am so super glad that Alistair is finally packing on the pounds again. He gained a whole 60 grams in 24 hours. It all made sense to me why he was loosing weight and I was told it wasn't alarming etc BUT I guess I have nothing better to do then to be a bit of a worry wort. So worry I did. They did start him on a caloric supplement just to boost him a tad as like I said before they can't give him full feeds for his weight as he doesn't tolerate it yet so they have to beef up the milk. Mind you he is on 55 ml every 3 hours. Don't know off hand what a full feed would be for him at this stage but more than he's getting. He's also obviously putting less work into breathing which is nice as well. So bonus bonus bonus. He also had his neuro exam today and the doc feels overall he's doing well. He is a tad hypotonic but he thinks its in regards to the work of breathing and nutritional intake which makes sense to me. Anyhow they are definitely on the ball well assessments here. They are going to be following up with him 4-6 months down the road as well following our discharge. So that will be another trip south from the north. K beddy bye time! Cheers Julie

Yahoo for Public Health Care!

Well all through this whole process I have been thinking "Thank goodness we live in Canada" Honestly staff are already calling Alistair a million dollar baby and perhaps thats not quite true but I'd say 1/4 to 1/2 a mill! I just really wonder what our expenses would be if we were in the States. I have heard that if its for a little one like this its different, but I wouldn't want to find out. And even if you have insurance in the states the fear that there is a chance you wouldn't be covered is enough stress as it is.

If I tally things up I lost count of my ultrasounds at 15 of them which go for at least $200 a pop. So there is at least 3 grand. I had numerous visits with my own family doctor for regular assessments, and who did a great deal of referals for me. These included seeing a genetic councellor two times in Prince George, and two referrals in Vancouver. The first day of referrals down here I must have seen at least 4 or 5 perinatologists, a pediatric cardialogist, genetic councellors, lab techs, U/S techs, and maternal fetal medicine nurses. Then once I actually moved down I had a visit with the perinatologist in maternal fetal medicine once a week, an ultrasound weekly, and home care nurses preforming nonstress tests biweekly in my apartment. Then I was induced and in hospital for 5 days, delivered, on antibiotics personally, went to the OR, had a resus team for Alistair, and then Alistair has been in the NICU since then at 4 GRAND per day! Yep every single kid in the Women's NICU is a 4 grand a day babe as then it prevents them from having to keep track of every little item for each one. So whether a kid is on just oral feeds to bulk up or on a ton of machines with a one on one nurse like Alistair was at the beginning it
's 4 grand. So yeppers not that its all about the money but it sure makes you darn humble after the max I have ever had to spend is $87 a month for health care and then you get in this reality of life.

I have a cousin that moved back to Canada as he was paying $15,000 a year for his family of 5 and they were getting more and more allergies and the insurance companies were threatening to increase their health coverage! Thats with no major underlying probs! So ya our health system isn't perfect but hells bells I think its pretty darn fricken good!

Another quick story: I had a bit of a startle last night as I was climbing into bed at 2am (Yes I'm getting to be a bit of a night owl) Anyhoo the bloomin fire alarm went off. So I thought there is no flippin way I'm going to get stuck on the 14th floor in a fire if this is the real macoy! So I grabbed my most tresured items, yes my camera with pics of Alistair and I was off down the stairs. Interesting experience. I had two guys fly by me on the stair well and thats all i saw for peps there. Then i get around to the front of the apartment and there was a max of 60 peps outside at the end! Not what I'd call brilliant for a apartment with 26 floors. A good 1/2 hour later 3 fire trucks came and the guys piled out in there heavy gear in 27 above for a false alarm! Poor lads! ~ I thanked them and took a picture of their trucks as everyone stood around grumbling. Quite entertaining really.....

another video!

Hola! This is going to be short and sweet as this mama needs to head to bed. I never seem to get there until after midnight! Another great day BUT HOT HOT HOT! It was 27 deg at 11pm tonight. Wow I just keep reminding myself that it'll be 40 below before we know it so as Jason would say quit your B*@CHING! Alistair and i had another 5 hours plus of cuddling today. He did loose a tad more weight ie 6 grams but the doc said that normally at this stage they weigh weekly not daily and they won't be doing drastic stuff with daily weights. They did increase his feeds from 50ml to 55ml every 3 hours as he wasn't up to full feeds yet. However they are trying to do a balancing act as too much feeding causes him to vomit and too little causes him to drop weight. Anyhow he did a pretty good job of keeping it down today. Mind you he did slime my hand a few times just to remind me that I was mom! K enjoy this video from the 27th Nighty night! ~ JULIE

Hot Stuff!

Hello Hello!

Another hot one! I spent most of it indoors but when I did go outside at 3ish and 10pm it was still sweltering! I'm just sweating sitting in this apartment with all the windows open. Glad I'm not 90 years old in this heat today. Blah

Well once again I had another long enjoyable day with Alistair. I got to the hospital around 1130 and left about 10pm. I wasn't going to stay so late but as soon as Alistair's night nurse came on the little munchkin beside him needed some immediate extra attention so I just figured I'd hang out with my son in the mean time. We had two long cuddles and again WOW my son is hot stuff! If I didn't know any better I would have figured I was going through early menopause. I was told today that moms body temp rises when cuddling to keep her kidlet warm. Warm we were! True or not I was flippin hot!

Alistair is pluggin along pretty darn good. He had lost weight again tonight so they are going to consider adding a supplement to my milk to get him going in the other direction. They don't really seem to surprised as he has been taking off CPAP and therefore he has to work a lot harder to breath. (yes he's still off the CPAP) In addition they have increased his feeds quite rapidly to 50ml and they figure that the pressure up on his diaphragm increases his workout. Everything at the moment is a bit of a marathon for my little guy. He even has said no to the soother that last couple days as he has been having some reflux (another very common thing with CDH kids) and it seems to gag him more so than give him pleasure. So they have also started him on some ranitidine to help with the reflux. But all in all he's pluggin away nicely.

He seems to have a bit of a fan club at the NICU. Several of the nurses have labeled him "the king" as he sits propped up in his bed. They say he gives directions and they have to follow his orders. "Its all up to him" Anyhow its nice to see so many people that seem genuinely interested in his status.

Well this girl had better go to bed!
Enjoy the little clip
Cheers Julie

First Bath with Mom & Off CPAP (for now!)

Well just as I was thinking there was going to be nothing to write about voila I'm back writing again. To my surprise Alistair was still off CPAP when I got to the hospital at noon. I just assumed he would be back on as it can be such a process. But no, he was on high flow oxygen that ranged from 23-25% (thats pretty good!)They also have him in semi-fowlers (like sitting in a car seat) to take pressure off the diaphragm. He still may go back on but just the fact that he has coped for 24 hours is such a big step for our little guy. Plus Alistair loves the fact he doesn't have thsoe plastic tubes jammed up his nostrils. But wouldn't any of us! The other great thing about him being off CPAP is that snuggles are so much more dooable for. Today we got in over 5 hours of cuddling!! I have to say I love it. I totally didn't get this mom and babe bond thing until now. Frick I can and did for 5 hours do nothing but watch him and smell his little head! Maybe thats why my milk is coming in so well! I guess for moms who are having problems with their milk letting down, the nurses will take a blanket that the kid has laid on give it to the mom. Then when she is pumping she's suppose to take it out and lay it on her chest so she can smell it and supposidly it helps with the milk coming in. Interesting! Perhaps all the smelling I did of Alistair while he was vented helped me. I truly would stick my big snouzer to his head and smell him as it was the closest I could get to the little gaffer at the time! He smelled pretty darn good too!

I ended up staying through shift change tonight and Alistair's night nurse asked if I wanted to bath him. So we got another first under our belt. He absolutely loved it. Maryann just got me to stick him right in the water with the warm towel wrapped around him and he was in heaven. It probably reminded him of the extra large bath he created in utero. He then was placed into a nice fresh bed (which we all love) with a warm towel, and as you can see he was happily snoozin!

Well that was a long great day. Now hopefully this darn apartment will cool off. We are all experience a heat wave in BC! Enjoy it before we're at 40 below!

Cheers People
Julie

We're here for a bit!

Well I swear this kid of mine is changing by the day. He seems to be getting plumper as we speak. Tonight he'll actually be on "full feeds" which is awesome. They keep reducing his IV nutrition (TPN & Intralipids) and it looks like he'll have his PICC line removed in a couple of days if he keeps up with all the good work. A PICC is a peripherally inserted central catheter. So basically an IV that is inserted for long term use and is threaded close to the heart so the meds are mixing with a higher blood volume. His was inserted into a vein on his head and threaded along and actually its the charge nurses that tend to insert them here. My usual routine is to get to the hospital around noon or one and stay till just before shift change at 7pm. So today I got to snuggle again for a couple of hours. Since his CPAP was rubbing his nose a bit too much they wanted to give his nose a break so we got to try again without the CPAP. He actually did really quite well and mellowed out in my arms. He does fluctuate a bit in color from pale to pink but I guess that his vessels in his lungs will continue to spasm for awhile yet. But they did do a blood gas (blood work that makes sure his body is compensating properly and not making his blood too acidic or basic) at about 630pm and he was doing well. Then I just called again at 10pm and he was still doing ok without the CPAP and they were going to repeat another blood gas just to make sure. I ended up asking one of the charge nurses, who has written her masters on CDH, what her best guess would be in regards to us getting home. Her answer was 6-8 weeks. So we still have a bit of a while to call this southern part of the province home. iIn some respects I was surprised and others i wasn't. I guess I was a tad hopefull that we'd maybe progress out of here a little quicker. However, its nice to have the reality now then down the road as I can get my head wrapped around it now rather than be hopefull all along and get disappointed. So bonus for having accomodation till the end of August. Then I may just have to figure something out for September. Well I got my butt out and went for a walk in Central Park, a 90 hectare park within a block of the apartment. I put on a good stride for about an hour and man does this bod feel it! Geeze I guess it'll take some time to get back to the ol' bod I had before! LOL K as usual I go picture crazy daily! I think I'm at 370 odd pics so far. LOL I know ridiculous but fun! Enjoy the little video clip Cheers Julie

whoop whoop yellow poop!

Yeppers that was the excitement of the day yesterday. Its quite significant for Alistair really as it means my breast milk has gone from mouth to diaper. So he has past the test of having his bowel and stomach manipulated following surgery and of course jammed up in the left chest for several months. So super bonus! Tomorrow he will be up to full feeds which is about 50ml every 3 hours. Today I was able to give him a total of a ml drop by drop around his soother and he seemed super delighted sucking madly away. So once he gets off this CPAP, which could still be awhile, he can try the real mccoy! Well this mama has to get use to it just being her and her son for the next while. Jason and Mom drove North yesterday. Another tear shedding moment! I definitely miss them. Especially Jason's good hugs but hey thats the reality of it all. I just have to get in a bit of a solo mama routine and things will normalize for me. Soon enough! Actually things are progressing so well compared to what we expected. But I don't dare ask when they'd expect us to head home as I definitely don't want to fixate on a specific date. Plus I think its really hard to determine as each babe moves through each step so differently. Basically, Alistair has to do three things. He has to beable to take feeds from the breast or bottle, gain weight while doing so, and beable to breath on his own without any support. So I'd have to say we are definitely on the right track. Last night he was weighed at 6lbs 4 oz which is definitely up from his birth weight of 5lbs 14oz. Which isn't too shabby considering they were still trying to decrease his weight exactly one week ago to get rid of all the extra fluid. Plus he won't be on his full diet until tomorrow. So go Alistair go! Well its a gorgeous night here. A major lightening storm is occuring this side of the mountains up the valley and then when one looks towards the city its sihoetted against a pinky orange sky. Gorgeous. I definitely don't struggle with the view here at night. I'm also getting some major views of incredible fireworks shows that last at least 15 min if not more as there is a world wide competition going on her in Van. Well Alistair and I have been having some great cuddles. Hope this finds you all well Cheers Julie

Mad Jersey Cow!

Well this girl is definitely a mad jersey cow. Why mad? Well due to the fact I was in England living on a farm after 1980 I am not allowed to donate any milk or blood for that matter. They say I have a potential to be a mad cow carrier! Hmmm No comments on that one please LOL! It's really unfortunate as I am producing anywhere from 1400- 1800 ml every 24 hours! Yes over a litre a day. So I'm over producing at the moment considering that Alistair is on 14ml every 3 hours. I did just call the NICU though and they said that the team has decided to increase his feeds by 3 ml every other feed. So perhaps he'll start to make a dent on my frozen supply. They have a great system at Women's regarding breast milk. Its actually the only hosptial in Canada that all0ws moms to donate their milk which is why its a bummer I'm a mad cow! I've already maxed out how much I can store at the hosptial so lucky for me there is a big freezer at the apartment. They get you to mark the first week of milk you pump off as its the "gold" as they say. So Alistair still have a bit to go before he's off the gold. I am actually starting to throw out the first milk pumped off as the "hind milk" or later stuff is supposedly richer in fat etc...So fat he shall get! Actually just in the past couple of days its been very obvious that he is plumping out just on basic things like his fingers in toes. So its nice for this mama to see.

I have to say the whole pumping process has been quite the experience. My very first try I got 50ml off which is so unusual I guess. Then it rapidly decreased to nothing for a good 24 hours. I have to say when your child is laying there paralyzed and sedated and all you can do is be present it means so much to a mom to beable to pump and get something. It surprised me how much of guilt trip it was when the good ol' boobs weren't doing their job. So any of you who work with moms and breastfeeding its all about support support support! Cause if I hadn't been the stubborn person I am I would have stopped. Frick and now look at me its gone to the other side of being on the verge of ridiculous!

Another thing about the whole breat expressing thing is they have a room in the NICU where you can pump with all the other moms. Its actually very therapeutic for a lot of the moms because you all get chatting about your particular situations. I have to say this environment makes me feel like I'm one of the luckier ladies and not only because of my crazy milk production. Most of the moms are there with their very premature babies. I can't even count the number of moms there with babes who were born at 24-26 weeks and 40 weeks is term! Alistair is actually labeled as the "big boy" by the team. Anyhow these other families have such a journey of unknown. Like Jason has said we are just so fortunate to only be dealing with what we were expecting prior to birth and nothing more like bone density issues, blindness, mental ability, bleeds on the brain, lungs collapsing, etc etc... I just talked to a mom whose kid is in the NICU and his due date is Sept 20th!!! So yep we feel very very fortuate in the scheme of things.

You may notice on our little family pic that Alistair has some splints on his hands. We have known all along that he has some contractures of his middle fingers and a bit to his wrists and thumbs. But I have to say it was on the bottom of our list of concerns. So it must be good if we are at a point of being concerned with his hands and wrists. Anyhow the team here is totally on it which is nice. So the little guy is wearing splints on his hands for 3 hours and off for an hour.

They did take off the CPAP today and put him on room air but after about 4 hours he was using too much energy to breath. So slowly but surely he will be eventually weaned off. They plan to keep him on CPAP at night and then when ever I'm about to cuddle he can be on room air or nasal prongs. So lots of little baby steps!

K blah blah blah blah
I do get pretty chatty on this thing. I had better get off it and spend some anniversary time with the hubby! Jason realized yesterday that our anniversary was today! Priorities hey!

K Cheers for now! Julie

Dad and Son

Yesterday Jason got to hold Alistair for the first time. Alistair instandtly relaxed in his arms. The nurses were trying to get Jason to take off his shirt for skin to skin! I'm not sure if that was to benefit Alistair or the nurses!! LOL It was wonderful to see Jason holding our little guy. It has always made me feel a bit soft watching any guy holding their son and then when you see your own husband doing so the feeling is overwhelming wonderful. I think Alistair really enjoys being held period! Its nice that he is finally off the vent so we can do so. They are still talking about attempting to wean him off the CPAP Thurs. He's presently breathing room air so its more the pressure in his lungs that he's presently dependent on. I called this morning and they have uped his feeds to 6ml every 3 hours. There is a lot of acid in his stomach but they feel if they push the feeds it will eventually rectify itself. His poops are increasing so thats a bonus!

Well another hot and positive day down here!
Cheers to All
Julie

Ready for a space shuttle mission!

Well Mr Alistair is making more positive moves in the right direction but the poor little guy looks like he should have jumped on the last shuttle that headed out to space! His contraption looks more invasive then the past stuff but it really isn't. This "CPAP" machine is a step away from having to have any respiratory support. The last machine he was on was a ventilator and with that he had to have a tube down his throat into his lungs and many factors were controlled. However, with the CPAP it just uses positive airway pressure with a sealed nasal prong to help reduce Alistair's work of breathing and improve gas exchange. I thinking he'll be on it for a week or so till he graduates from it but we will see. He still has some indrawing with it which just means he still has to work a bit to breath even with the CPAP. But anyhow doesn't he just look cute! Its so nice that he's on CPAP as I have been able to hold him a lot more. Yesterday I held him for 4 hours and it was wonderful. It's also great as I get to hear his little muffled cries, he gets to suck like crazy on his soother, and he even took a ml of my milk from a bottle! At the moment they are giving the majority of his milk by a tube that is now through his mouth into his stomach. Yesterday he was on 3ml every 3 hours and he didn't have any problem with it. I guess for his age they want to eventually get him up to about 50ml every 3 hours. He is also off all meds except TPN and Intralipid (basically liquid food). So we'll keep crossing our fingers that he keeps moving along in the right direction.

Cheers Julie

ushkabushka! Crocodile Tears

Well today was Alistair's due date and did he ever make it a big day and of course his dad and uncle went for a overnight sail to Saltspring Island so I got to enjoy it all with Grandma Hedges. We got there just after lunch and Jenny, Alistair's nurse, said they were plannning to extubate him around 2pm. So she figured I should have a cuddle before all the goings on. So before I new it I was holding Alistair in my arms for the first time. O my goodness, the crocodile tears just flooded my shirt and little Alistair. Suprisingly enough its not that obvious on the pictures above. But anyhow it was wondeful and I got to hold him for about 45 minutes. It was just such a lovely feeling after only being able to feel his warmth on the palm of my hand from his head over the past 12 days. Then at two the big moment came to extubate. Really a very simple procedure. Just the idea is quite significant and i got to see his whole face without a ton of tubes for the first time. Not too bad looking if I can say so myself. So from 2 till 7pm he managed with just some nasal prongs or a tad of oxygen given into his nose. But unfortunately he had some extensive indrawing(straining where you can see his chest pulls in just around the area of his sternum) Plus they took an xray and his lungs were not inflated as the doc would have liked So just as I left at 7pm for supper he got placed on CPAP. This is just a basic machine that places his lungs under positive pressure to help them stay inflated and provide better oxygenation. The great thing is that he is maintained on the lowest settings so hopefully its a short transitional stage to being support free. The worst part is it is quite the off putting contraption visually. Worse then the vent. Plus they sometimes go back to intubation as the little ones don't cope so well as it proves to be to irritating to them. So its all trial and error. However, when I returned at 11pm he was a tad unsettled but the nurse had just down a bunch of other care and blood gases ( heel poke for blood) So I stayed about an hour and he seemed to settle while I placed my hands once again on his head and chest. so I'm hoping he can cope with just the CPAP and not get intubated again. But whatever shall be shall be.

Supper I have to say was excellent. My friend Carol Ward up in FSJ hooked me up with a kiwi friend of hers, Jan-Louise, that works in the NICU. So she had mom and I over for some scrummy salmon dinner and a glass or two of pinot grigo! It all went down really nicely along with the fabulous conversation. Its just great for the brain to have a chin wag that takes you away from solely focusing on conversation that is 100% about the NICU environment as one can become overly submearsed. If that makes any sense?!??!

Well this girl better head to bed!
Cheerio Julie

Grandma Hedges & Uncle George

Well Alistair is proving to be a little trooper! He is now completely weaned of the Morphine and the midazolam is down to 35 mcg/kg. They have also reduced the dosages of his two diuretics: lasix and ethacrynic acid. Early this am they weighed him at 2700 gr so still a tad above his birth weight of 2670 gr. So they still figure he needs to get a bit more fluid off. One can sure see the difference in his face from day to day just with the shift in fluids. As of yesterday he started taking some breaths on his own which is super to see. He's on 24% O2 today with 15 supported breaths a min, and his lung compliance is around 15%! All this means is he's on the right track! They were thinking of extubating him tonight but his CO2 came back a little high so they want to hold off another day or two. But again its all being controlled so another not so big a deal aspect. He's still not being tube fed as green bile has been coming up and the doc said its just like his little gastro system is too full. All the meds he was and is on have slowed his gut down so it takes a bit before its operating properly. However, its coming back clearer and clearer each day so they are thinking tomorrow or the next they'll try to tube feed him again. I definitely have enough milk banked up when he's up for it as I've already past my max in the storage freezers at the hospital! He continues to pee and poop up a storm though so that is reassuring to see. As for opening his eyes Alistair still refuses. He continues to threaten to do so with the raise of an eye brow or a severe grimace here and there but not as of yet. So perhaps tomorrow!

Uncle George flew in today for the weekend to meet his little nephew. Again another great moment. It's so special to see Grandma Hedges and Uncle George in the same room with our little guy. It just makes things seem so much more on the right track for getting home. After visiting with our little guy we headed to Queen Elizabeth Park and walked about the quarry gardens. Then we decided to treat ourselves to the "Seasons in the Park" restaurant. We sat out on the patio and had the best seat in the house with a framed view of Vancouver city. I'll tell you what. If you want a high class meal which will make you drool with every bite you must come to this restaurant. Albeit, it was a pricy meal but O MY GAUD GOOD STUFF! Actually not just good ......phenomenol! After we had stuffed our faces with this incredible food we headed back to say good night to Alistair. He definitely is looking content apart from the odd choking episode on his tube. We just keep crossing our fingers that each day progresses like the last.

Well people...I get a lot of thank yous for updating and taking the time to make posts on this blog. But I have to say its really a therapeutic thing for me. Instead of having a councellor I blog and get my thoughts out so THANKS TO YOU!

Hope all is well on your end!
Cheers Julie

Not Enough About Jason!

Hello Hello!

So all along I've been meaning to write specifically about my husband Jason throughout this whole experience. He truly has been an incredible support, husband, and father. From the Sunday that he arrived he has been amazing. He's hugged and held me through emotional break downs, been comical when I need to have my mind averted, and just been present with silence. Even though I told him he should go back to the apartment when I first was induced so he could have a decent sleep he refused. The whole 5 days I was in the hospital Jason slept by my stretcher on the floor on a hard grey mattress. When I was up in the night to express milk he was up cleaning the equipment. When I had emotional breakdowns in the middle of the night he seemed to know what to say and do. During labour was the only time I got a little irritated by Jason. And you know why? Although I'm not a loud labourer he was still able to sleep so soundly on the floor beside me that I had to at first quietly and then yell his name TEN times before he woke. And then he said "I'm hardly sleeping" LOL What a guy! But all through the labour he would get up, rub my back, hold my hand, and just be present. He went with his son Alistair to be at his side as soon as he could but he was back quickly to see his wife off to the OR. When I came out of the OR having my panic attack he was there to support me, rubbing my neck and back while it spasmed. So all in all I am one VERY FORTUNATE WIFE! As I've said in the past we have always been close but this experience has just brought us to a whole other level. (ooo this is making me emotional) But I just wanted to highlight how special he has been to me! - Jason just found out I'm writing about him and said well it shouldn't take you long "JERK is just a four letter word so it shouldn't take you long " LOL what a guy! Love him! (The pic above of Jason eatting is him having his cuban cigar equivalent i.e. a 2lb lobster and a New York Steak!)

Well we had another great day yesterday. We got to the NICU and Alistair had been moved out of his private room to the general population! Like Dr. Singh said "you know what that means don't you!" with a big smile. So yepperoos Alistair is making nice headway. The day before he was barely moving on his own but yesterday he was doing a lot of movement but he refused to open his little eyes. Although he did make a few attempts but who would want to open them and see nice flourescent lights for your first sighting? He was crinkling his forhead, grabbing my fingers, and coughing on the tube in his throat which was all great to see. So perhaps today he'll open his little bitty eyes for mama. Yesterday they had cut his morphine in half again to 25 mcg, he's off the epi, and they're weaning him off the nitric oxice (vasodialator of lung vessels). His system seems to be quite content with all the changes which is great to see. It was also fun to have Grandma Hedges see her grandson for the first time. Was that ever a tear jerker for me too. Another lovely moment. Mom and I spent about 5 hours chatting to Alistair and each other at his side. Ooo one more thing that was great news! They did an echocardiogram (checks his heart function) and all is well! I got the thumbs up from Rosanna, a "fellow" which is a doc going for more specialty schooling (thats my basic attenpt at explaining it!) So that was great to hear as his heart has been somewhat stressed working against his irritated lungs.

Well I had better header to see my son!
Cheers People!
Julie

Pre & Post Surgery Lung X-ray

Well Alistair had another great day! Alistair had his paralytic stopped so we got to see him move for the first time ever! It was lovely. He was sticking out his tongue, moving his lips, and wiggeling his toes and fingers. He's still very sedated but he does respond even when i give him a smooch on his head. Like I said its lovely. They ar also weaning him off some of his meds such as epi to see how his system tolerates it. Right now his blood pressure seems satisfied with the changes along with his O2 sats. So like I am moving forward cautiously optimistic!! : ) I have posted two x-rays one is taken just after he was born and you can see that his heart is squished to the right and his left lung his really small. Its hard to see too but his stomach and intestines are up in the left chest. Then the other x-ray was taken today and you can really see how much things have moved about. Just below the left lung it appears grey and that is fluid that took up the spot when they moved the stomach and intestines. This is expected. So yep all this makes this mama happy. Another thing that made this women happy is I jumped on the scale at the hospital for the first time since delivering and i lost TWENTY-ONE POUNDS!!! Yes same scale that weighed me before and after. I think this girl was retaining some water! LOL My legs were definitely tree trunks for the first few days. Anyhow that was a nice little treat for this girl too. Well my mom is coming tomorrow which is exciting for all of us!

Chat again soon!
Cheers Julie

Some New Pictures!

I finally remembered to bring the camera home. I called in to the NICU and talked to the nurse several times last night and Alistair was staying relatively stable so finally at midnight I was able to crash and crash i did! 8 hours later this jersey cow woke up! I had drenched the bed with my good ol' milk supply! LOL I never would have thought. Anyhow I definitely woke rested and got on the phone again to the NICU after the team did their rounds. Alistair was stable and they were able to reduce some perameters in several areas which was a positive. In addition, his heart was starting to shift back to the left as they were hoping yesterday. They believe that there had been some air in his left upper chest and once it got reabsorbedd his heart was able to start shifting back. They feel that this could have caused increased stress causing the changes yesterday. His left lung looks great for size. It appears he has at least 1/2 his left lung so they feel it must have had a significant chance to develop prior to the intestine and stomach sneaking up and taking its place. So we are now hoping that his lungs perfuse well on their own and there is no future problems with hypertension there so that we don't have to go on more meds which could affect other systems. A friend that works at NICU said that one should try to proceed cautiously optimistic and keep in mind that when things are altered or changed one really doesn't know how these little ones will react. So she said don't be alarmed if Alistair gets taken off meds or vents etc and then gets put back on as the team really doesn't know until things are removed if these little guys can tolerate it yet. So good advice for us! Anyhow just made another call to NICU and Alistair is unchanged since earlier today which is a good thing. Anyhow the following pictures are ones that have been taken from my first time of seeing our little guy after getting out of the OR to today where he is much less swollen. Enjoy! Julie

K I'm having an issue with posting pictures from fickr as a slide show but so for now just copy and paste the link below in the address bar and you should beable to see some more pictures! Hope this works. If this isn't working for you let me know!

http://www.flickr.com/photos/40497184@N08/sets/72157621296874583/

Some Pictures!

I was able to grab a couple pictures off our video camera to share with you all! I'll post more later today if I remember to pick up the camera. I just talked to Alistair's nurse and she says he is stable. They have done more tweaking and to attempt to get various parameters to a specific level but all in all he had a relatively stable night which is reassuring. K enjoy the pictures of our little guy.
Cheers Julie