Wednesday, December 12, 2012

And the rest...

I'm not strong enough to leave this over the next few days. I've just been through my JM posts and just want to get this done.

This was what Rodger posted for me after Zac was born...

April 9 2008

Hello all Mellie's friends.

Big day has come and almost gone and all we have to show for it is a healthy baby boy! Mellie wanted me to update you all on how things went as soon as I got home, so here I am.

How the hell am I supposed to get this Big Mac out of this stupid box? Ahh. Got it.

So, we are the proud owners of a pink male human born at precisely 8:00pm tonight after 9.5 hrs labour. Given his heart condition and younger gestational age, us naive parents were suspecting a little bub. Not to be up staged, he weighed in at 3560 grams, 9lb 13.6oz and 53.5cm, 21in. That's 125 grams heavier than his female counterpart. Bloody hell those Big Macs are small. I could have sworn they took more than 3 bites last time I had one.

Mellie did very well only needing the happy fun gas for about 2 hours at the end of her ordeal. She's very proud of herself as are everyone else present at the birth. Zac's doing fine in the NICU and now that he's out of mum, the doctors have been able to get a good look at his heart. Sufficed to say, he's top priority for transfer to the Royal Children's and looks like he might be having his first op sooner rather than later. They call these fries?!?! Fries do not DROOP!

I left the camera at the hospital, so no pics yet, but definitely tomorrow.

April 11 2008

Zac's post-natal diagnosis is the same as his pre-natal diagnosis...Transposition of the Great Arteries, Hypoplastic right heart, VSD and Pulmonary Atresia. So far there is still no bed for him at the RCH. There was yesterday and we even had a time for it, until a doctor ordered CPAP on an older blood gas, so it had to be cancelled. Very annoying. There should be a bed for him over the weekend sometime with his surgery happening over the weekend or very early next week.

I've been able to feed him a few times but cardiac babies can be very sleepy babies, and so he's not overly interesting. Guess me and the breast pump are gonna become best buddies for a while. I got to hold him for about 20 minutes this morning. He had a bit of a feed, burped, then curled and sighed and feel asleep on me. He's not overly fussed on being touch by the nurses but they all have cold hands so I can't really blame him for it. Its rather odd to hear him cry in the NICU. All the other babies in with him are premmies, and have that little squeal cry and he has this seemingly loud newborn howl.

Rodger made a mistake when he posted too by the way. Zac is NOT 9 pounds 13.5 ounces... he's 7 pounds 13.5 ounces. Still bigger than Jas but only by a few ounces. There are two possible reasons for this... I may have had GD. While I was in labor we were talking to the midwife and found out that my result was 'borderline' and I should have then gone and done the 3 hour one. The second possible reason is our dates were off. I guess there is also a possibilty that it is a combination of the both of those.

April 14 2008

Even though I knew this day would come, nothing could prepare me for watching them take Zac away. I just wanted to grab him up and tell everyone to leave him alone and stop poking him!

They took him in at about 11:20am and its now 1pm. He may be in until 6 or 7 tonight. Instead of sitting at the RCH and doing nothing we have come home. When the surgeon is done he will call and we will go back in. Mum has Jassie today and tonight so we can stay as long as we want tonight.

Hearing all the details about the surgery really brought it all home for me. I'm glad the consent forms only needed one of us to sign them as I don't know if I would have been able to. The next few days will be tough. Hopefully though Zac will be one of those amazing babies that only spends a few days in the ICU. Realistically though, he may spend up to 3 weeks there. What scared me the most was hearing that for the first few post-op days his chest will be left open, so I'm going to assume no cuddles for the next few days. That hurts so much as it all happened so fast this morning that there wasn't time to cuddle him. The last time we got cuddles was last night.

April 17

We had some great news about Zac today! When we got there this morning not only was he off the vent totally but he was on only minimal O2 support!! This is a BIG step as cardiac babies are well known for being overly sleepy and needing added support and needing to be very slowly weaned off it. There was talk today about transferring him today to the Cardiac Ward and out of NICU but this came from one of the interns and the head doctor wanted him to stay till tomorrow. This evening this turned out to be a good thing.

Zac had a tachycardia episode. They define it as a heart rate of 200 bmp for longer than x period of time. There were meds ordered to control it but Zac controlled it on his own. The nurse explained that is can happen when they have been awake for a while... almost like he got over excited. They can't be too concerned about it as we only found out about it when we rang a few minutes ago and they are still looking at transferring him out of the NICU tomorrow. I kind of knew something not so good had to happen at some stage. It just seemed to be going a bit too well. Now we just have to hope that its an isolated incident and that it doesn't happen worse and they need to call us. I could also use some sleep vibes. He's doing well now though so that should help, as should the fact he got it under control himself. Rodger explained it to me like this..."He just want to see what his newly designed ticker was capable of".

April 19

Zac's being moved today out of ICU!!!! Just waiting for a bed up on the cardic ward!! This is a huge step in the right direction, which is him coming home. The ICU nurses/drs work towards getting up to CW, and then the goal up there is to get him home!


Zac was having some de-sat issues and was re-admitted to the PICU the following morning.

April 21

This is partly copy and pasted from elsewhere so bare with me...

They did an ultrasound on him today and it seems to be a problem with his diaphragm. It requires further testing but that hasn't yet been done and probably won't be till tomorrow. He's ok when he's over on one side. He has really good sats. Its just when he's on the other side and sometimes on his back. The dr's all seem to have AWOL there today. There was no one around. Its frustrating because I want answers. I want to know what is going on and I want to know what will be done about it.

And if I'm asked one more time by one more person how many times a day I'm expressing milk for him I'm gonna scream!!! I'm doing all that I can. Of course I'm not going to have a huge supply. He hasn't attempted a breastfeed since last Sunday the 13th and I haven't even been allowed to hold him since Saturday.

I've been home for about 40min now and have cried the whole time. That's all I'm doing of late. I just answers. I want my baby home. Its just not fair!!

Jassie got her first cuddle on Saturday. She is so sweet with him. She points and says "brother". I was holding him and she was sitting next to me. She kept leaning over and stroking his head then laying her head on his to give him cuddles. Then she'd pick her head up and kiss him before repeating. Its hurts so much to think that if something happens she won't remember him.

I feel selfish too. Jassie has started doing things that I haven't noticed coz I'm so preoccupied with Zac. Rodger is doing everything with her. I'm suprised she even knows who I am anymore. Zac is now 12 days old and Rodger has only held him twice and Jassie's only had one lot of cuddles. Stress makes me tired too and so all I want to do when I'm at home is sleep until the next time I can go in.

I'm mad and annoyed at everyone. Rodger for being able to "switch off" and being able to spend so much time with Jassie. Jassie for being too young to take into the hospital all the time which limits the amount of time Rodger can go in which means I'm left alone to deal with it all. I'm even made at Zac for being sick. I'm mad at my mother for searching out the phone number there and calling and demanding to speak with me. I'm mad at my brother for hitting my car and claiming its not his fault (the law says otherwise). We were getting ready to sell my car. We can't afford to fix it to sell it. I'm mad at my in-laws for not paying Rodger enough. Ends are now barely meeting and while public transport is cheaper than driving in its still a strain since I can't get a concession ticket since everything is in Rodger's name since he's the one that works. I'm even mad at Huggies for putting a delicate looking newborn boy on the packaging of their newborn nappies. I think I'm going crazy...

April 23

My poor little bubba. It seems it is Zac's diaphragm causing him respiratory distress. He's having another scan done on it in about 20 min and if it is he will be operated on this afternoon sometime. I'm in two minds about it. On one hand I want it to be something that is fixed that easily but on the other hand I don't want him to have yet another surgery.

I got there at about 2pm yesterday. I really did try to take the whole day off but I just couldn't. Half a day did help though. When I got there the little ratbag was having another tachy episode. He'd started it just as his nurse was about to take out his pacing wires. The pacing wires were inserted to help his heart re-start after being on by-pass last week. They can also be used to help 'pace' the heart if it gets to fast. And that's what happened yesterday. He was fine after that though. I never got my cuddle as I didn't want to upset him after that. He was wide awake for a while though and so I dropped the side on his bed and got as close as I could and we had a little talk. He makes the cutest faces ever. He was focusing on my face and everything.

Rodger and I are both going in today. Thus far Rodger was going back to work this week but since he's had to take Jassie with him he has decided to make use of all the sick and holiday leave he has and take the time Zac is in hospital off. Maybe not all of it but for the time being anyways. Jassie had half a day at home yesterday and for the first time since her last day at home she slept all night. I think it was effecting her more than we thought. This was as well, Rodger will be able to visit Zac more. Jas is in daycare two days a week so he'll come in on those days and every second week he will go in on Friday and I will stay home with Jassie. That gives me a break from the NICU and time with Jassie and Rodger more time with Zac. His parents aren't happy about it but then again they are void of all emotion towards their grandchildren so it comes at no suprise to me.

There is net access somewhere at the hospital and I think its free. I just need to find it. If Zac does have more surgery today I might spend that time looking for it to keep you all up-to-date. Although I do have shopping I need to do so its also tempting to make Rodger take me into the city to do it. We'll pay through the nose for what I need but at least it will be done. Just have to wait and see. Guess it depends on how long the surgery will take.

April 29

He's back in ICU with an infection and having lots of trouble maintaining his O2 sats

It seems to be some sort of respiratory infection. No idea on whether its bacterial or viral. He's had blood taken for a culture but that won't be back for a few days. As odd as it may sound I hope its bacterial as its easier to treat. They have already started him on anti-bugs just in case. As far as we know (haven't been able to get onto his nurse yet this morning, she was on a break when we rang) he is still only on nasal prongs. We were told that he *may* need to go back on cpap if his de-sats continue and he has trouble breathing.

He was fine yesterday morning when I got there but by 2pm he wasn't. Its a very scary thing when your holding your child and they stop breathing every few breaths coz they are having so much trouble. Blue is not a colour I want his lips to be.

May 2

I was woken at 7:30 this morning by the phone. He is again having breathing issues and will quite possibly be sent back to ICU for a forth time. No one has told me any more info than that. I can do this for much longer, I am no longer coping.

May 14

Zac's home-coming has been postponed indefinably. His is still having some increased work of breathing and they still think it may be connected to his feeds. It will be a few more days before we know. If it's not connected to his feeding then no one really has any idea what the heck is going on. We have a date for his second op and that is sometime early August. However, if they can't figure out what his breathing is from, it may be sooner if he's strong enough. I don't even want to think about what happens if he's not strong enough. Hopefully though it is reflux and the meds help, and we can slowly increase his feeds and he can come home. Even then though we are still probably looking at end of the month at the earliest. I've pulled him out of all the studies he was apart of. I can't do it anymore. As much as we hate to do it, next week Rodger is going back to work three days of the week. I'll go in on Mondays, Wednesday, and Thursdays. Rodger will stay home with Jas on Mondays, I'll be home Tuesdays and Fridays with her and she has daycare Wednesdays and Thursdays. Rodger will come in on Thursdays and the weekends. Its just all becoming a bit too much to cope with. So until he comes home I won't be around here. I don't really have an April baby right now.

June 6

He's tolerating his increased feeds. He's been on 30ml per hour (continuously) through his NG tube, and then a 35ml bottle every three hours!!! His feeds will be reviewed by the drs when they do rounds soonish, but that is the largest amount he has ever had and tolerated, and the fact he's finishing that bottle is AMAZING!!

June 8

Zac has been having some bradycardia episodes (low heart rate). However, one of the most common causes of it is high potassium levels which he has a history of. Its also very easily treated if that is the cause of it. Course it may mean a few extra days before he can come home. Then again, it might not if it can be treated easily. We won't know till Tuesday as his dr isn't in again till then since Monday is a public holiday. We will be speaking a a dr of some sort when we go in today though. I know they were investigating that cause of it, so hopefully they will have found it by the time we get there, and started to treat it. On the upside, they haven't changed his feeds which is something the last hospital would do if he looked at them funny (or so it seemed).

I was upset to when we first found out, but after rememering that he has a history of high potassium and that that can lead to lower heart rates, I'm totally calm again. He has been moved to ICU but only because the nurse patient ratio is lower just in case something happens. I would imagine once the cause is found and treatment started he will go back to his ward.

June 9

Zac is going downhill and fast. He is now on a ventilator as he is having trouble breathing on his own. Please pray for my little boy. I don't want to loose him

June 11

First... thank you all so much for all your kind thoughts and prayers... I think they are working...

Blood cultures aren't back so still unsure on the infection.

Zac was weaned off his sedation today and so is awake. We got there just after he woke. He had this look of utter fear on his face. It was so sad to see an innocent 2 month old look scared. He calmed down after a bit and even gave us some huge smiles.

His is still on the vent but is breathing pretty much on his own. They should be trying to wean him off the vent tomorrow. They did try today but then an on-call dr (i don't really like them, i prefer ones who know zac) decided to see if upping the vent again would change anything. It did... for about 10 min. The vent is still up as the nurses think its best not to mess with it too much until the cardio team see Zac in the morning. He's getting no added oxygen through it, its just helping him 70%ish of the time. It will allow him to rest and hopefully get better sooner.

He has the same nurse tonight as he did last night and she says he is better than last night. That's always good to hear. From what we can see, it probably is some sort of an infection. He has been on broad-spectrum anti-bugs for a few days and seems to be slowly getting better. I know from experiance that bacterial infections that require anti-bugs heal slowly, and the person gets better slowly.

When we first arrived today he was having 2 beats then a pause, by the time we left he was having at least 3 beats before a pause, and even up to 5 or 6 beats before a pause. This is what makes us think that it may be an infection of some sort and as it clears his heart returns to a more normal rhythm. The main concern is that the rate is still lower than what it should be.

If his heart continues to skip beats there are few treatment options from what we have been told. It may be drugs, it may be a pacemaker or it may be that Zac will just have an irregular heart beat. Only time will tell.

June 11 (later)

I just tried to post a blank message that's how nervous I am right now.

Zac's surgeon has just called... they are going ahead with the pacemaker...NOW. As in this afternoon, now now. Not only that but... at the same time they will be doing his second stage op. This was not supposed to happen until August. Its very unusual for it to be moved forward and very rare for it to be moved forward by 2 whole months.

The recovery after this one is usually easier but given how difficult Zac has proven to be, it may be the same. Either way it kind of a good thing as this op turns these babies around.

This is so not what we were expecting, but hopefully it will make our little boy healthy again.

June 13

We just got home after a long day.

His op was down for 7:30 but the hospital were having power problems and so he never got in till 10:30am. The op only took 3 and 1/2 hours instead of the 4-5 we were told. Thus far Zac is doing well and is stable. His pacemaker is in and working well. They are hoping to wean him off the vent tomorrow. His sedation is already being weaned. He even opened his eyes once while we were there. And best of all (even if this is kinda odd and ewww) he's peeing like a champ!! Without the help of Lasix!!! Trust me its a good thing!

There was now a huge gap in my posts. I think things just got to me really bad. I know there was a lot of back and forth about him being transferred and when it would be. Then there was this post...

July 25


*points at siggy*

I'd edited my siggy and put "All being well Zac will be home July 29th!"

July 29


Take a guess what this post was about! haha!

August 13th 2008 (would have been at about 8:30pmish)

Yeah again. *sigh* He's gotten worse over the course of the day and after a visit to a GP we're taking him into the hospital

August 14th 2008 (Would have been at about 2am)

My baby boy is gone. He stopped breathing at the dr's with Rodger, there was nothing they could do for him. My baby boy is gone.

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