Day 92 & 93

JETT

Day 92, 29th December, exactly 3 months old!! - Cuddle day :)

Today Jett had his blood test to test his coagulation factors in his blood. The tests came back good, but it could also be due to the Vit K he had a couple of days ago. His platelets were up, 107 so that's good.

Jett's oxygen requirement is at 29% which is good, although his rate is up a bit at 40. He is tolerating handling and suctions quite well lately, sometimes brady's to let you know he needs suctioning, but he doesn't need all his ventilation pressures increased anymore. His secretions are no longer blood stained and they have thinned out a bit, although he still sounds very rattly.

We had a lovely cuddle for 3hrs, he was asleep on my chest and I slept too. It's the best. His oxygen requirement remained the same, he seems to tolerate being upright better than the cradle hold. I think with the cradle hold he slips down and his lungs get a bit squashed.He needed his tube re taped after his cuddle, he is so strong and the tube loosens very quickly because he pulls his head away from it..

I think thats all that happened today :) Oh, I think I forgot to mention he had his head circumference measured at the beginning of the week and it was about 36 or 36.5cms.

Day 93 - Wash and weigh day

Mummy's little boy wants to be a smelly boy lol, he has hated his bath the last couple of times! They have been very quick! He has been fine getting weighed though, I don't think the nurses even increased his oxygen for the transfer. His weight today was 3590gms, so that's a loss of 235gms. dr D is happy with that though, since she increased his lasix a couple of days ago and also put him on a potassium sparing diuretic spironolactone. Dr D feels that todays weight is his real weight rather than fluid :)

Dr D said she is going to start harassing the surgeons to get the ball rolling for the contrast next week. Scary, but good too.. I guess the hard thing is that the contrast still wont give us a definitive answer as to what's happening inside that little tummy of his!

Jett had to have another tube re tape today. Twice actually. 1st time they did it because he'd had an xray this morning to see if the tube needed repositioning and it did, so they put it further down. That has to be done because he is growing so much, unfortunately because he slobbers so much and moves against the tube it became really loose quite quickly so was done again tonight. He handles tuube re tapes really well, he just lays there. Last night though an unfamiliar nurse had him and restricted his arms and he fought the whole time. The nurses that know him and know he's ok, don't pin him down and he is a lot more relaxed. Plus I am there to hold his arms if need be, but normally he's pretty good.

He has been positioned midline over the last few days and he seems to like it. Sometimes he does, other times he just gags on the tube. If he is ok, I like it because then he can see his mobile properly. Not sure what he can see, but he can definitely see something, when I move it his eyes flick up to watch it. I'm glad he has a little bit of stimulation. He must be so bored now that he's getting older. His sedation was weaned down to 1mcg the other day and tonight it is being cut out completely which means he will be more and more alert. I sing and read him stories, but still, not being picked up or be able to be taken outside must be awful.. I can't wait til I can take him outside. He has to be off breathing support first though, so a long way to go yet!

I think that's it, here some cute pics of Jett with his teddy. I encourage him to hold it otherwise he holds his tube which is not good lol!

Day 90 & 91

JETT

Day 90 - Cuddle day :)

Jett had his blood gas today, they are only done twice weekly now, his CO2 was 89 so his ventilation rate was increased to 40. His platelets were 71, so have dropped again :(.. He had a liver ultrasound, they are checking to make sure his liver isn't enlarged and that the bile ducts are working correctly and aren't blocked. Apart form that it was a fairly uneventful day, still has thick lung secretions and brady's if he's not suctioned regularly. The secretions are only stained with old blood, it's not fresh blood which is good.

When I spoke to the nurse about organising my cuddle time she said it was handed over that I had been having too many cuddles. I was really upset and confused by this as Jett is stable and his Dr said she was happy for me to have regular cuddles. Anyway, upon further investigation, she said it was because I had been having cuddles every day, which i haven't. It was clarified that I was only having 2nd daily cuddles which is what I am allowed to have, so I got my cuddle after his afternoon cares. It was soo nice, I didn't cradle hold him, I had him upright on my chest and he slept beautifully (so did I) for over 3hrs :)

I was really upset when the nurse thought at first I couldn't have a cuddle. It is so fucked that I have been a Mum for 90 days and have never been alone with my son. It sux that I have to 'arrange' to hold him. It sux that I am trying to get as many cuddles as I can get because I am so scared that this is the extent of my motherhood. I am so scared of him having surgery. I am scared I'm going to lose my baby and not know what it's like to be a mother outside of the hospital.

This really sux that we are still here in hospital. I'm so over not being able to mother my son the way I want. :( I just want to get my baby home.

Day 91 - Wash and weigh day

Today jett was weighed and he weighs 3852gms! Dr D thinks he has a little bit more fluid since going on to the oral lasix, so she has put his dose up to 4 times a day instead of twice. The lung secretions are ok now, still thick with the occasional blood staining, so Dr D still wants to do coagulation tests. This involves an arterial stab :( She is going to do it tomorrow when his blood gas is due. My poor little baby :( So fucking unfair.

The surgeons were talking about putting Jett on profylactic antibiotics because the sediment in his wee could be faeces , so he is at risk of a kidney infection apparently. They think it could be caused by a fistula. Trust my boy to be weeing poo! Not nice at all.. I am dreading this surgery, I am so terrified of what they will find in his tummy. I am scared they wont be able to fix him. I'm so scared he's going to die. The thought that this could be it sickens me. Every day I am with him, I am trying to make the most of each day so I have no regrets. I hate thinking about it, but both the Dr and the surgeon have confirmed that it is a very real possibility nothing can be done for him. I haven't lost hope though, I still express and I still talk about getting him home, I have to try to be positive. I can't give up on him. I have to believe that this isn't how our story ends.. I am just hoping for a miracle.

Day 87, 88, & 89 Jett's first xmas :)

JETT Day 87, Saturday, Christmas eve

I think it was a relatively uneventful day (I can't remember, it's now Monday!) He had a wash and weigh, I can't remember his exact weight but it was around 3.5kgs. Oh now I remember the event lol - Jett had a nice wash, tolerated it really well, but when they out him in the scales he lost it and had to be suctioned and bagged right there on the scales! The nurses have started to say I've been there too long because I didn't even freak out, I just moved out of the way and continued making up his cot.

You know you've been in ICN too long when...

*You don't even flinch when your son turns purple and has to be bagged

*when he starts to desat and you just yell to the nurse "I think he needs a suction"

* When you instruct the nurses exactly what the last nurse dressed your son's wound with and they don't bother to double check because they trust you know what you are on about

* When the ICN nurses greet you by name and ask how Jett's doing even though they haven't looked after him for ages..

*When it's wash and weigh day and you just walk in and start preparing things, the nurses say "Just call us when he needs a suction"

*When the area surrounding Jett's cot looks more like a bedroom than a hospital space

* When you're in the same room for so long you see babies come and go many times

* When your baby was the smallest in the room, but is now the biggest

They are just a few examples. I'll add more later lol.

No changes made to anything ventilation or medication wise.

I tried to dress him a in a green "My first xmas" suit but he spewed on it so had to get changed. I am determined to get at least one picture Lol.

Day 88, Sunday Christmas day!!

Today I changed Jett into his xmas suit again but couldn't manage to get a pic of him where he wasn't crying. I left it and thought I'd get some later but when I went back in the arvo after quiet time we turned him on his back (he'd had a long sleep on his tummy)to find his bag had leaked so he ended up with poo all over his outfit. I came to the conclusion then that he just didn't like it so he got changed again lol!

Jett had a pretty settled morning but then in the late arvo his lung secretions were really blood stained. The Dr was going to put a cannula in and take a full blood count and a coagulation test. I was really upset because I thought I'd miss out on my cuddle. The Dr rang Jett's Dr, Dr D and she was happy to leave the test til tomorrow, but he had a vitamin K injection instead. Life certainly goes on in the ICN, nothing stops for xmas in there!

The day overall was pretty good, Ronald Mac house put on a really good lunch, cold meats, prawns oysters, salmon and a range of salads.There was heaps there and we were able to pack some into containers for later. I ended up getting my cuddle, from 9pm til 1am. It was so nice, first time I have snuggled my own baby on Xmas. I missed Taite and Seth so much, even if I had Jett home Xmas will still be hard, nothing will be as it should be without my babies.

Jett was really settled with his cuddle, but was on 50% oxygen which is quite high. He has been weaned back down to his normal 35% though now. When I put him back to bed he was wide awake for ages! He was looking at his new mobile that Santa bought :) He loves it.

I'm so glad I got to spend a Christmas with him, I am very aware it could be our only one. Our cuddle was very special :)

Here are some xmas day pics :)

Feast at Ron's house :)

My lil baby having a xmas snooze

"Waaah, I hate this xmas suit!"

aww, xmas snuggles with Mama :)

Day 89, Monday, boxing day

Jett had another wash and weigh he is a massive 3656gms :) He didn't enjoy his bath today which was unusual, but tolerated the weigh really well, which is good. The Dr's decided not to do the coagulation test today, just his normal blood gas and full blood count. He hasn't had it done yet though, probably later this arvo..

Jett had a long period of awake time after his wash and weigh. I put the mobile in front of him and he seems to enjoy looking at it. He has a small teddy with a santa hat and I get him to hold the hat, so he doesn't hold his tube. I'll be very surprised if he doesn't pull his tube out someday soon. I hope not though, that would not be good!

Jett loved his dummy this morning, he was showing signs of hunger so I put some breast milk on his dummy and he loved it. He seems to have a good suck reflex, I hope that when he is ready to start having proper breastfeeds he takes to it easily.

January is nearing and it's scary. The day Jett has his surgery will be a scary day. Mum is coming up in mid Jan to stay with me, so she'll be here for Jett's surgery. I can't wait to see her again. Bring on 2012 and bringing my boy home!!! Everything has to be ok, I can't imagine leaving this hopital without my son.

Day 86 - Cuddles :)

JETT

Today I had a nice long chat with Dr D. She said the contrast study will be done in about 2wks and it might be done over a few days. They will put contrast first in Jett's NG tube, then depending where it goes, they will then decide whether they put contrast in his drain, up his bottom, or both.. Then comes surgery a week or so later.. This means that surgery is probably about 4wks away. I asked her if she thinks it will drag out til Feb and she said No, Jett is probably as stable as he will get. It's really really fucking scary. I asked her if she thought the actual surgery was risky or if the biggest risk was that they wouldn't be able to fix his bowel, and she said she feels he is strong enough for the surgery, he has already proven he's a fighter, but fixing his bowel is another matter. They have to cut through all the adhesions that formed first of all, then from there see how much bowel is viable. It will be a massive surgery. What we are hoping is that will be able to form a stoma, start him on feeds then have the stoma reversed.. I am hoping he has enough bowel to live.. If he doesn't then it will be decision time.. I don't want to have to do that again.

Ventilation wise, things are the same. He has been taking a bit to recover after suctions today, but he recovers eventually. We had a cuddle from 5pm til just after 8pm. He was so snuggy and comfy :) Mummy had a nap too, it was so nice.

Jett seems to be doing well on the oral frusemide, his nappies are still really full and he has a bit of fluid but not too much. They are using 3kgs as his working weight. His Morph and Medaz got weaned again by 1 today, so now he's only on 2mcgs/kg/hr.

As his surgery draws nearer I am getting very scared. I am aware that the next 4wks or so is very very precious. I can't lose my Son, I just can't, not after the twins, not after coming so far with him, but if I do I know I have been the best Mummy I can be. He has brought so much joy to my life, I feel like my heart is going to burst with love every time I look at him. I am just hoping for a miracle, because I honestly think if he has enough viable gut to survive, and this surgery is a success the rest will be a breeze and we will be home in no time.. He is a miracle already. Christmas will be bittersweet for me this year, having Jett here, but in hospital and of course always missing my twins, but I'm really looking forward to Jett's first Christmas, and I hope it's the first of many we spend together :)

I need Jett, I have no idea how I would be able to function in normal daily life if I lose my 3rd Son. He is my last chance at being a Mother to a living baby. He simply HAS to be ok. Surely my motherhood journey will extend to further than the NICU? He's gotta come home, There's just no other option :)

Day 84 & 85 12wks old today!!

JETT

Somewhere along the line I have recorded his weight wrong. His last weight was actually 3288gms. Today he got weighed and he was 3398gms :) I do think he is a bit more edematis since he has been having oral lasix, but he still looks good and his nappies are still very wet, so at least we know some of it is getting absorbed somewhere :)

He is doing the same ventilation wise, his rate and pressures remain the same and his oxygen averages 34%. I think I mentioned in the last post, but his morph and medaz have been gradually weaned so are now at 3mcgs. His drain has been draining, but it was oozing onto his skin. The surgeons thiought the tube was blocked so we cut the drain short to only a few cms long and put a colostomy bag around it, so the drain just drains into that. It's much better. The bag is tucked into his nappy and clothes, so now when you move him he doesn't have a long tube hanging out of his clothes. He looks neat and tidy :) The only lines he has now is his central line and ventilator, he's much easier to transfer now, they just quickly disconnect the ventilator while moving him. I love seeing him breath on his own! He copes well for short amounts of time :)

Sometimes he gets really unsettled, it's hard to tell if he's hungry, in pain, or just having a whinge because he's older and he's a bit bored. I HATE that when he cries I can't just pick him up.. Instead I lay my head as close to him as I can and hold his hand while singing to him. I hope my closeness makes him feel more secure, kind of like a cuddle but not quite. He seems to settle when I do this. I also sometimes put some EBM on his dummy, but I don't want to make his hunger worse if that's the problem. Last night I had a cuddle and he was a bit unsettled during it, but it was late at night and that's often his awake time anyway. He sleeps and wakes throughout the day, but I have noticed at night he's always awake from 9.30 til about 11pm. He was still awake when I left last night, it was the night the nurses replace all the IV and central lines so because it's sterile I have to leave. They left me there until 12.45am though, so that was ok. I just hate leaving him awake. I don't want him to think he has to self settle. I like to be there so he feels secure while going to sleep. I know that when he has his 4am cares he has to settle himself to sleep, I hate that thought, but selfishly I am too tired to get up go at that time of the morning although I normally wake to express around then. I wish I could just sleep there right next to him..

I bought his xmas present today. A cot mobile. At least it's something he can use. It will brighten up his cot anyway. I can't wait to unwrap it with him. My first xmas with a living baby. Wow, so special. We are having a cuddle that day :) I can't wait! I know that it's not ideal, but this is our first xmas together. I hope it's our first of many.

MUMMY

I am ok. I swing between sad and happy. A couple of days ago I felt sorry for myself and Jett and thought how unfair the world is, but today I feel good. I am so glad Jett is still here with me :) Christmas will be special this year. I just hope next Christmas is better cos we will be at home :)

Day 83

JETT

My lil Jett is getting so big! His weight today was 3234gms.. That's about 7lb 2oz :)... He's getting chub on his legs that's not fluid.. It's gorgeous!!

Last night we had an awesome skin to skin cuddle :) When he was put to bed we had to change his dressings around the drains. He is leaking out of both drain sites, but mainly from around the intact drain. It's definitely poo, it smells so strong. So I ended up with jett's poo on me for the first time lol. Again this morning it leaked but instead of changing the dressing we just reinforced it because it's not good for his skin. This afternoon though it had leaked again, so it had to be changed. This time it has jelanet on it, gauze, then comfeel dressing, then tegaderm, so hopefully it wont leak through! I am hoping and praying with all my heart that this is a good sign that his bowel is somehow working..

It has led me to think about how I will handle it if Jett has to have a colostomy that can't be reversed. I can't imagine what it will be like for him or how his life will be affected. I really really hope a miracle happens. I know a colosotomy isn't a big deal for me.. I'm happy to take him home in any state. I love him, he's my son, but I hate the thought that he could be teased about it, or that he wont have girlfriends etc because of it :( Oh well cross that bridge if we come to it. I will just be glad to have him home one day.

I can't believe that we are still in ICN at Christmas. It's hard knowing that we should be nearly home, it's hard knowing he may never come home. He has to though, we have come so far. The joy this little man has brought to my life is amazing. I feel like my heart is about to burst with love. I love seeing him first thing in the morning. He is always asleep and I wake him up with kisses :) I swear he smiled at me this morning when I was kissing him. Whatever face he pulled was cute anyway :)

This afternoon his IV finally went. I was surprised it lasted for the blood transfusion! So now he will be given his lasix orally 2mg/kg and his caffeine will stop. I'm so glad he doesn't need another IV... Yet.

Here is a pic of him in an outfit that was originally bought 3yrs ago for his brothers :) OMG he's so cute I wanna eat him for breakfast, lunch and dinner!!!

Day 80, 81 & 82

JETT

Saturday, Day 80

Tonight my baby and I had a looong cuddle :) I had my baby in my arms from 5pm to 9pm and it was bliss. Jett has been fairly settled ventilation wise, still needing frequent suctions though. The secretions aren't really blood stained anymore so that's good. No changes to any meds today, IV is still in with caffeine and frusemide going through it.

Sunday, Day 81

A big day for my darling :) My lil fatty had his wash and weigh today! 3114gms :) He had a nice bath and most of his cradle cap has finally gone. I have been using coconut oil the physio gave us then giving him a good exfoliation :) My brave boy had his tube re taped today and his NG tube changed. It took many goes and 3 nurses to get his NG tube in for some reason. His little nostril ended up bleeding, it was awful. That's why I want to be there when they do things like this. Although most of the time it is straight forward there can be that 1 time where it is difficult, therefore being traumatic for Jett. I was glad I was there to give him EBM on his dummy and hold his little hand.

I have noticed the older and more alert Jett is, the more he cues he's hungry. I hate that he can't eat. I try to put EBM on his dummy and he loves it :) I am also trying to make sure he doesn't need the dummy to settle, trying other techniques like singing to him, patting his bum etc.. It works most of the time. He loves it when I sing to him. He likes his head stroked too sometimes. He likes to be swaddled tight. I find if his arms are flapping about he hits himself with his cannula. Before I leave at night I turn him on his side, snuggle him up tight and pat his bum. I always wait until he's sound asleep before I leave. I still haven't got used to leaving him. I still find it so hard. I just wish we were at home :(

Monday, Day 82

Today Jett had a cap gas and full bloods done. His CO2 is lower, it was only 71 which is good for him. His HB was also low unfortunately, 75, so he has blood running now. Luckily that IV was still in. :)

Jett also has some sediment in his wee. He had a sample taken, so they will send it off. I am hoping it's not faeces, but it's possible that some sort of fistula has formed in there. Anyway, they will test it and if they think it is, they'll let the surgeons know. It probably wont change anything, they'll just keep an eye out for infection. The other possibility is a urinary tract infection. I hope it's not that, but at least if it is, it's easy to treat.

Jett also had an echo today. His heart is still enlarged and the duct in his heart is still moderate, measuring at 2mm. They were hoping it was smaller or had closed but, no, it's still there. Not sure what plan of action will be taken for that, if any, at this stage. I haven't seen Dr D since he had the echo..

ETA: Jett just had his eye test. I wanted the consultant to do it, but he wasn't there so I let the registrar do it. She said this time stage 2 zone 3. I don't want her to do it anymore. Last time she said stage 2 and when the consultant looked he said it was stage 1. Not that I don't believe her, but.... I will be having a loong chat again with Dr D about it again. he's almost term now, so I don't think it's necessary if there hasn't been major changes. 6 monthly tests, even monthly, but not weekly.. I hate it so much, Jett coped really well though, no brady's this time :).. He also had his HC measured, it's now 34cms :) The average size of a full term bubba :) He's got lots of brain in there :) He's so clever!!

I am getting a cuddle tonight :) I can't wait

I think we are all caught up, Jett is such a busy bubba :)