Day 152 & 153 - Smiles :)

The last 2 days have seemed to drag, nothing particular has been happening but last night I was very upset. I have been eating here at the hospital and last night I had a meat pie. About half and hour after that I felt faint and didn't feel right. I got the nurse to take Jett off me and I went into MACU (which is where I'm staying in the hospital) I layed down for a bit then went back to jett. When I got in there I was hot and cold and had to leave again. I ended up vomiting which meant I couldn't go back into the nursery :( I ended up getting a room at Ronald Mac house for the night and Jett had to be tube fed overnight. It was so awful not being able to see him. I felt ok after I vomited so I knew it was the food, but had to stay away regardless. It was the first time I have spent that long away from Jett since he was born. It was awful, I knew he'd be crying and wondering where I was.. I had a sleep and woke up at 2am which is normally when i feed him. I soent most of the night in tears and missing my baby so much.. When I got up in the morning I rang the nursery. I was told I had to stay away for 24 - 48 hours. Anyway, I called the CNC in the morning and explained that I had no more vomiting, no other symptom and that I was sure it was the food. So after some discussion with Jett's Dr I was allowed in THANK GOD!!! As soon as I went in he fed like he'd never been fed. I had missed hi so much I gave him millions of cuddles and kisses :) I was even rewarded with a smile. He is so cute he does a half smile and looks away as if he's shy.. He's only done it a few times, I can't wait til he gets a big grin.. I'm sure it wont be long now..

Today Jett had his bath and weigh. He now weighs 4628, so he only lost 20gms which is good. Hopefully he will start putting on weight again :)He loves his bath, but prefers being on his tummy. If I put him on his back he tries to roll over, so he spends most of the time on his tummy. I let water drip over his face today and he liked it. I think I have a water baby :) Can't wait til next summer!

Jett had bloods done yesterday, he doesn't even flinch when they do a venous stab, he's so brave. His coagulation factors in his blood are good and his solenium (trace element in blood) is on the low side of normal so he will only have a few more days of that and that should be ceased. His vitamin levels weren't back yet.That's about all that's been happening, Jett has been touring ICN in his pram getting loads of attention from the nurses. They all love him and can't believe how good he looks. He is still a bit jaundiced but it's slowly disappearing. Jett is 5 months old tomorrow! I can't believe it!

Day 150 & 151 - 1st outing..

Yesterday Jett had his first outing.. Well, in the pram that is lol.. I took him in the pram around to ICN where we lived for so long! He didn't mind the pram, but he was a lot happier when the nurses took him out for cuddles. We got lots of pictures with the nurses and talked about back in the day Lol.. Jett is such a miracle. We were standing outside the room he had his first operation in and remembered the terrible news that was given. Both nurses were there that day. They said they remember so clearly how grim it looked for Jett. They themselves simply can't believe how far he has come :) I can't believe it's real.. I'm taking my baby home.. Soon :)

Today Jett had his weigh and he has lost more weight. 80gms in fact. Dr D said not to be concerned though just yet. I am just worried that we wont be able to go home until he shows steady weight gains.. Only time will tell.

Jett had his second hearing test today and failed :( In both ears.. Last test he failed the right but passed the left so it was a bit of a surprise. Anyway now we will see an audiologist in about 2 weeks so he can have further testing. I'm trying not to worry..

Jett is still feeding beautifully and is just the love of my life!! Can't wait to have him home!!!

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Day 149 - Hearing test

So as expected Jett lost quite a bit of weight now that he's off the TPN.. He now weighs 4728. He did weigh 4898!! No one is worried just yet though, I just hope he puts some back on by Sundays weigh..

Last night was our second night of baby led nursing and Jett again had a great night. He had his last feed at 10 then didn't wake til 2am then 6am, so it was pretty much like the night before. Not sure if I mentioned in the last post but I managed to score a hospital bed on the same floor as Jett so I just stay here now. The nurses just call me when he wakes and I'm only 2 seconds away :).. Jett has still been feeding well during the day, he feeds just about every hour. I don't mind, I love feeding him and cuddling him. It's the best :)

Jett had his hearing test today. They put little ear muffs on him and connect 3 sticky dots (similar to ECG leads) to his head and shoulder. They then measure the brain waves which tells if there's brain response to the sound. Jett's right ear failed, but left ear passed. They re do the test and if he still doesn't pass with both ears we will then see an audiologist. I was a bit surprised he failed, he always responds to noise. I was wondering if maybe the ear phone wasn't stuck to his ear properly and it was letting other sounds in? Anyway I'll find out when they do it again tomorrow. He is at high risk because of the long term ventilation, oxygen etc and considering only a few weeks ago I had no idea if he'd even survive, I think if we get out of here with mild hearing loss in one ear, I think we have done ok.. I know he's not deaf. Anyway, whatever happens I'll deal with.. For now I'm going back to the nice thoughts of getting him home, which is closer than ever!!

Day 146, 147 & 148 - Central line out!

Today Jett is 21weeks old.. He has been Earthside almost as long as I was pregnant!!!

Anyway...

Yay, yesterday Jett's central line got taken out! It was slowly weaned down and left at 1ml for about 16 hours then it was out! I was so happy I cried. The first time ever my baby is line free :). Jett isn't even monitored anymore. No oxygen sats or heart monitor woo hoo! He had a lovely bath being able to float and splash his arms. He had tummy time and looked like a little froggy. I think he'll be a water baby :). Jett got weighed and was 4898gms. He'll probably lose some weight now the TPN has gone but as long as it creeps back up he'll be fine.

Jett had no reaction to his vaccinations at all so I was glad about that. Home is sooo close.

After some persuasion I have been given a bed here at the hospital so Jett and I are on the same floor. We had our first night of baby led nursing last night and it went beautifully. He only woke up once through the night :). This means his NG tube can go! He doesn't need it for anything :) yay yay yay! I am so happy Jett is feeding so well. He fed every hour yesterday, so I only left quickly for lunch. Apart from that I'm here. Jett was awake all day yesterday except for 2 hours when he slept on my chest. Gotta go, bub's awake :)

Medication details

I haven't updated the info on Jett's meds for a while so while my snuggy boy is asleep on my chest that's what I'll do.

Daily selenium - this is a trace element he is deficient in. It was added to his TPN but he's been having it orally for the last few days.

Weekly Vitamin k - Jett was having fortnightly injections but is now having it orally and will continue to have it until his liver function is better. (He has conjugated bilirubinaemia caused from long term TPN)

daily pentavit - a multi vitamin he is on this specifically because he is deficient in vit A & D

Nilstat - both cream and oral drops to prevent thrush which can be caused from TPN

He had a stat dose of vit A yesterday and still has soluvit added to his TPN.

Jett had full bloods done yesterday which include liver function. He will continue to have these tests fortnightly until further notice :) Jett's head circumference yesterday was 38.8cm

Today Jett had his immunisations. He had 3 needles normally its only 2 but I didn't want him to have the hep B, so hey had to separate the vax. :( he cried but then when he had the oral rotateq he forgot all about it! It's really sweet so he loved it. I was cuddling him the whole time so of course he had a breast feed after :) he's back on full monitoring now for 24 hours to make sure he doesn't apnoea or brady. He should be fine though, at the moment he's sleeping soundly. :)

Day 144 & 145 - :)

Both yesterday and today Jett had big sleeps, he must be having a growth spurt :) I got massively frustrated yesterday because his TPN was put up to match his weight gain again! So for each Ml it was brought down, it only went back up! Also I was upset because they changed his NG tube overnight. They are not supposed to do ANYTHING without me there, especially because Jett doesn't even need his tube through the day, he could have had the day without it.. Anyway, I got over it and had a good day. The nurses know now, there are notes everywhere lol.

Dr D put Jett's feeds up faster today to compensate for the TPN going up over the weekend. He's now on 60ml 3hourly overnight and still demand feeding through the day. (I don't like the term demand feeding, maybe I can say we are doing baby led nursing?? )His TPN is coming down 1ml QID as his feeds increase still by 3mls. The TPN should be finished tomorrow night.. Yay! The central line will come out! I can't wait.. Then we will start baby led nursing overnight too!

Jett got weighed today, his weight is 4890gms which is great. I'm so happy he is putting weight on without his milk being measured. He may lose weight when the TPN goes. It wont matter though, as long as he starts to put it back on. Jett loved his bath today. It relaxes him and he sleeps well after it. I can't wait til he can float properly with no lines in!!!

Immunisations tomorrow :( I really thought hard about doing it, Sometimes it can make them go backwards in terms of needing oxygen. I don't think it will though. Jett is 6wks adjusted, he's not a tiny prem anymore. He is having all of them except Hep B. Not sure if I will keep with the schedule, I may delay further vaxxes..

I can't believe our time here is coming to a close... I couldn't be happier!!!

Day 142 & 143 - 6weeks adjusted

Well my days have been about cuddling and feeding :). Jett is completely demand fed through the day and has fed every 1 to 2 hours. It's been great I have been able to ditch a few expressing sessions. Technically the lactation consultants advise you to express still but I'm too busy holding Jett. I still express in the morning, twice through the day and then before bed and my supply is great :)

Jett's tube feeds are going up 3ml twice daily which means the TPN is coming down 1ml twice daily. Bummer is they put it up because of his weight, but its back down to 7.77 now. Hopefully Wednesday it'll go. Then we can start demand feeding overnight too. Jett's weight today is 4828gms, its good he's putting on weight he's obviously getting enough booby milk :)

I'm really happy feeding is going so well. I am so happy. It shouldn't be much longer and I'll have my son home! I'm finding it quite challenging because Jett needs so much stimulation and its hard being stuck in the one spot. I'm getting head aches all the time from having a sore neck, although the last 2 days I've hidden in the corner with a recliner lol. I'm getting spoilt, if there are any meals spare I always get them. Most of the nurses know me well ;)

Well I'm on my phone and Jett is waking so next update will be in a couple of days :)