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Friday, December 30, 2011

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!

Wednesday, December 28, 2011

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.

Sunday, December 25, 2011

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.

Friday, December 23, 2011

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 :)

Thursday, December 22, 2011

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 :)

Tuesday, December 20, 2011

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!!!

Monday, December 19, 2011

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 :)

Friday, December 16, 2011

Day 79

JETT

Today was a busy day for Jett. He had a wash and Mummy noticed that just above the dressing above his central line was red. I called a nurse, who then called another nurse and they decided to take down the dressing.. His poor little arm was so red and bruised under the dressing and there was a big indent where the line was against his arm :( it looked really sore. He has just gotten so big so the dressing was tight.. They gave it a clean and re dressed it putting gauze under the line, so when he grows it wont indent. I'm so glad it's fixed now, it would have been sore :(

After that big even he got weighed.. My fat man is 2958kgs :) Wow!!!! considering he was 874gms born, he's just huge lol. They are taking into consideration that the frusemide has been reduced though, so they are still using 2.7 as a working weight. Jett's morph and medaz was weaned to 4mcgs from 10 today.. Caffeine is to stop next week. Good news is, if the IV tissues Dr D is just going to give the frusemide orally, so no more IV's :)

The nurse that has him tonight put ear muffs on him because he was getting restless when it got a bit noisy in there. He looks very cute. Jett loves it when I sing to him, last night he was really unsettled so I wrapped him up tight and sang 'silent night' to him and he calmed and went to sleep straight away. Today I was singing 12 days of xmas.. He loved it :) All the nurses love Jett. Even when they are not in his room some of them come to visit him. The nurse that has him tonight hasn't had him since he had surgery. She can't believe how big he is.. He's Mama's growing boy!!!

MUMMY

Well today is the day that the OB and I spoke about making his birthday, waaay back when I was still pregnant lol. I would have been 36+6wks today. Although the date wasn't booked, I know that he would have been born by planned c section in the next week, hopefully home in time for Xmas. Well, that's so far from reality!! I can't believe my baby is almost 3 months old.

I do think of the what if's, but he's here and I am so blessed he's fighting so hard. I am so grateful that this xmas I will be with my only living son. I miss Taite and Seth so much. I wish I was buying them pressies from Santy and I wish I was having a normal Xmas with my babies. I will make the best of it though, it will be a very special Xmas this year with my lil Earthside Miracle. Jett makes me so happy :)

I am looking forward to Xmas. Xmas eve I am going out for dinner with some friends :) I am actually going to get dressed into something that doesn't have breastmilk spilled on it and wear make up Lol. It will be hard to leave Jett, but I normally leave him for an hour or 2 while I have dinner anyway and where we are going isn't far.. I think I will enjoy it, then I can come back and spend the rest of the time with my bub.. They will have a hard time getting me out of the nursery over xmas lol.. I am really hoping that next Xmas will be better though, Jett and I will be home and we can have a proper xmas :)

Thursday, December 15, 2011

Day 77 & 78

Jett

Wednesday, Day 77

Today Jett had a really good scrub :) Instead of just getting a couple of pots of water and doing a gentle sponge, I got a big bowl and some clothes and gave him a really good bath. It's amazing how filthy they get just laying there lol.. It was like he was shedding skin, I gave him a good exfoliation and he loved it. Next time we are going to sit him in the bowl.. We just have to be careful not to get his IV and central line wet. He was also weighed today, 2888gms!! My fat boy Lol..

He was sat up for the first time today.. So cute. He was wide awake and looked so confused. He has never seen the world at that angle before!

He had his tube changed today for a bigger one. They gave him a big bolus of morph and medaz. He has become so resistant to them, when they tried to sedate him for his tube change he had to have about 15mls!! They put his rate up to 40 and left it there til he woke up properly.. When they took it out they got a couple of pictures for me. They said he let out a cry when they took the tube out. I can't wait to hear him cry!




Look Mum, no tubes :) 1st pic is of him crying 2nd pic is as the sedation is kicking in lol







Dr D said that he would be having a contrast study done sometime in the new year and surgery is still planned for "Well into January" No date booked yet. Jett is creeping up to that 3kg mark. I think he will get there before they are ready to operate.

He had his frusemide reduced and his morph and medaz are slowly going to be weaned starting next week.

Thursday, Day 78 - 11 weeks old!!

We had a cuddle tonight :).. Jett is stable so we are having 2nd daily cuddles, yay! I had him for 2hrs and then he got unsettled.. We thought he was hot, so we uncovered him and he calmed a bit, but then kept crying.. After we put him back to bed he was still really unsettled. I hope he's not in pain. The Drs are aware and they will watch him. Clinically he is ok, oxygen is good, temp is good. Maybe he's just having a whinge now that he's older he needs more interaction. I am going to buy him a mobile for his cot :) It looks so cute when he cries, I wish I could hear him. I hate not knowing what's wrong though..

Today Dr D increased his TPN. His working weight is now 2.7kgs. He had the dressings around his drain changed tonight and coped with that really well. His drain is still draining a little bit and the Drs are pretty happy about that. We are all hoping it is a sign that his gut is working somewhere along the line.

Since his tube change he has only had small brady's and recovers quickly. I think it's making a difference, his oxygen is down to 30% and his rate is back down to 35. He had a cap gas done though and his CO2 was high. I think it was 94.. His PH though is still good, so his body is compensating. I thiknk that's all the news for Little Jetty boy. he looks cuter by the day ;)

Tuesday, December 13, 2011

Day 75 & 76

Jett

Monday, Day 75

Jett had a full blood count and cap gas. CO2 is at 85, which is not great, platelets are at 104 which is good. Probably the best they've ever been.

Jett is still having brady's with suctions, lung secretions are still quite thick. He's spending a lot of time coughing and gagging on the ventilation tube. I was supposed to have a cuddle in the afternoon, but he had a major brady and had to be bagged for the 3rd day in a row.. I was in the expressing room when I heard the emergency bell go, not realising til after it was for my son :(..

The drain in his small intestine has started to drain something :) Finally it's doing what it's supposed to be doing. I am hoping this is a good sign as it could possibly mean there is some form of communication somewhere along the line. Unfortunately we wont find out til next month..

Tuesday, Day 76

Dr D is back today YAY!!! (She is never allowed to go away again!)

This morning I was woken at 5am. It was Jett's nurse ringing. My darling had another big brady requiring bagging. He certainly knows how to get attention that boy!! So yeah, not a great start to the day..

All these episodes and watching him gag on the tube etc was making me think maybe he'd had enough.. Maybe he was saying he didn't want the tube anymore. I wasn't sure what our options would be. I spoke to Dr D about my concerns and she feels that although he is needing to be bagged it shouldn't be too detrimental to his health. (I was worried about lack of oxygen causing brain damage). She agrees that Jett has had enough of the tube. Often bigger babies do this thing called splinting. It's basically where they tense their chest and fight the ventilator. It stops the gas exchange from happening which causes de sats and bradys.There's not much they can do about it, Dr D said if it got really bad they could give him more sedation but they don't want him so relaxed he doesn't breath at all by himself. Unfortunately his CO2 is still high so he can't be extubated yet. She doesn't think he's ready. Dr D doesn't want to give him steroids to get off the vent because when he has surgery he will have to be ventilated again, so there's not much point. Jett had an xray this morning which showed the tube may not be down far enough because he's getting so big so the nurses re taped his tube and put it down further. Dr D wants to re tube him with a bigger tube in the next week or so. She definitely doesn't think he is at a point where he is struggling so much he wont make it to surgery.

He is growing e coli in his tube, but Dr D is not giving him AB's yet because he has been on them for so long and she thinks his body needs a break. She said if his lung secretions get worse or he shows signs of infection she may consider starting them. E coli is easily treated with a course of AB's.

I also discussed my concerns about the TPN affecting his liver. Dr D assured me this is very normal and the liver regenerates very quickly once TPN is stopped. Providing his surgery goes well and he can start feeding, his liver should have normal function not long after the TPN is stopped. They are hopefully looking at doing a contrast in the new year then surgery is still set for late January. No official date yet though.. I asked if Jett's little lungs would cope being ventilated for another month and she seems to think with the new bigger tube he'll be ok. Although he still has Chronic Lung Disease it isn't bad enough that he can't come back from it.. I think surgery is Jett's biggest hill to climb at the moment. I really hope they can do something. My son can't go through all this to not make it out of here...

Jett's lasix infusion may be stopped or reduced in the next few days. Dr D is just going to watch him and see what she thinks. On Monday Jett will be having another echo to check the duct in his heart.. They can still hear it's there but hopefully as he's grown the duct has become less significant..

I think thats about it.. I am getting a cuddle today at 3pm :) Can't wait!!

MUMMY

Well, I have been going through a lot of emotional turmoil. Watching my son struggle and reject the ventilation is really fucking hard. It made me question if I was doing the right thing. I don't want to keep pushing Jett if he's tired. Speaking to Dr D this morning though gave me back the hope I started losing. As explained above, the bradys and de sats are caused by the splinting and also from the lung secretions. If Jett didn't need surgery, I have no doubt he would have been extubated by now. There's still fight in my son. He's come this far. I wont give up on him. I just want what's best for him and sometimes I really feel like I don't know. All I can do is go with my instincts and be guided by the medical team. I'm glad Dr D is such an awesome Dr and I trust her. I trust that if she thinks it's becoming too much for him, she'll let me know. For now though, Jett and I push on another day. In a way I just wish January would hurry up. In another way, I terrified. For now though I have to try and treasure each day and take it as it comes. It's hard though to not get ahead of myself. I want to plan for the future.. I can't though, not yet. I just need to keep up my hope and trust that my son will make it home with his Mama..

I also want to add that the nurses have been amazing. They really take the time to look after me as well as Jett, I'm so grateful for the wonderful nurses out there.

Sunday, December 11, 2011

Day 73 & 74

I want to start this post by saying over the last 10wks the support I have received is absolutely amazing. Jett and I have received money, gifts, cards, letters, frozen meals and lots of kind words and thoughts. Please know that every gift, every card, every letter, every kind thought and message is so much appreciated. I don't have time to thank everyone personally, I have so many beautiful people in my life, so please take this as a big thank you. Thank you all for everything. Thank you for feeding me, giving me gifts I will treasure forever and thank you for giving me your love and kindness. It helps to keep me going :) xxxxxx


JETT

Saturday, Day 73


Well, what a crappy start to the day. I walk in to find Jett's cot a mess and him all uncovered. The room was in chaos.. It had been very busy, with new babies coming in, but as soon as the nurse saw me she came up to me and told me Jett had an 'episode'.. Meaning he saturated low, had a brady and had to be bagged.. Great! They assured me though that he recovered very quickly as soon as he was suctioned. He had really really thick lung secretions blocking his airway :( His secretions were still blood stained, but it looked to be old blood, no fresh blood yay.. Jett's oxygen requirement was ranging from 45% - 65% and his Peep pressure had been put up to 8 from 6.. His carbon dioxide had also gone up to 87 from 85.. I really felt like we were going back not forward..

Then the next crappy thing that happened was Jett's neighbour got moved :(.. Great news for them :)but not for us lol.. Ever since we moved into that room after Jett's surgery Bubba S and his Mum had been Jett's neighbour. We used to joke they were like brothers copying each other. It was really nice for me to have someone to chat to.. It makes days looong sitting in there with Jett with nothing to listen to except alarms... I still go visit them in their new room though :)

By the arvo my day finally improved when found out that Jett's platelets had gone up to 102, so they don't think there is a problem with his blood clotting. As the night progressed Jett's lung secretions were still thick, but had thinned out a bit and weren't as blood stained. Yay :) I also got a cuddle :) I held Jett for 4hours from 8pm til midnight :) It was soooo relaxing and because it was night it wasn't as busy. Jett managed to have his oxygen weaned to 39% which was the lowest he had been for 2 days :)

Needless to say although my day was shitty, after my long snuggle that night I went home very content :)

Day 74

Today Jett's oxygen has been weaned further sitting around 32%.. Still increased with handling, but at least it has been able to be brought down a bit :)His lung secretions are still thick and tinged pink, but he seems better today.. Although he did have another brady and have to be bagged this morning just before I got there. Again though, it's just because of the secretions. Regular suctions seem to help. He is having them every hour or 2nd hour.

Lil Jett Plane was weighed today. He coped with the handling really well. He now weighs 2716gms :) He is weeing like a champion, so we are hoping when Dr D is back she might stop the frusemide infusion. (Dr D is back tomorrow YAY!!!!!) The Drs seem pretty happy that he doesn't have much fluid and he doesn't look puffy like he did :) My main concern with stopping the frusemide is that his IV might not stay.. He's had that one in for a while now, it's managed to stay patent. I wish he could get rid of it, but he still has his caffeine through it.. If his frusemide stops he may just have some saline run through it to keep the vein open.. I think that is all the news regarding Master Jett :)

MUMMY

Wow, Mama had a bad day yesterday.. I am starting to really feel it. I have been doing this for a long time! Wake up, express, hospital, express, do Jett's cares, express, eat, express.... You get the idea... It's the same routine day in day out. Sometimes I just want a normal life. Sometimes I want to go to a friends place, or go SOMEWHERE other than the hospital.. I could, but that means leaving my son, so I can't..

Jett is 36wks adjusted now.. Sometimes I think if only he'd been born now. I know there's no point thinking "what if", he's here now. But sometimes it's hard. Especially because there is no fucking end in sight.. Before Jett comes home he has to:

*Make it through surgery (which is about 6wks away)

Then it could take ANOTHER 10wks to:

*Establish tube feeds
*wean off the ventilator
*wean off CPAP
*Establish suck feeds

That's like another 16wks in hospital if there aren't further complications.. So this is my life for a looong time..

I feel ripped off (again) I want to be a normal mother to my son. I want to spend time with him out of the hospital. I want to have him home. I want to be able to plan my day around what I want. I want to be able to lay in MY bed, snuggling him. I want to sleep next to him, not in a different building.. It's so hard to leave him every night. It really sux that whatever I want to do, I have to do without him. I can't even eat when I want because eating means time away from him.. So I live by the clock continuously..

I feel guilty when I say I don't want this life, because if Jett's here, this is our life and I'd take this life over losing Jett. Losing a baby is much harder than this.. I still grieve for my twins every single day. What I mean is, I want things to be different. I want to have a healthy baby at home.. I am holding onto whatever hope I have that ONE DAY I will have my son home.. For now though I just ride the waves, have down days, have better days.. I can do this.. Jett and I can do this together. Holding him last night made all my sadness and anxiety go away because right now he is here and I am blessed to have every day with him..

That was probably all muddled with negative and positive thoughts.. A bit like my mind :) It may not have made sense, but it is what it is.

I love my Jett Plane so so much. :)

Friday, December 9, 2011

Day 70, 71 & 72

Before I start this novel of the last 3 days I want to say that I am welcoming visitors again leading up to xmas.. It could change from day to day though so please check with me first and let me know when I should expect you :)

Also a reminder: Although Jett is in an open cot and is so much bigger now you MUST remember that he was born very premature. Please don't come and see us if you have had or have a cold, runny nose, sore throat, fever, infection or cold sore. These viruses can have damaging or fatal outcomes for the babies. If you do visit us at some stage, PLEASE DO NOT TOUCH JETT. I know it's tempting, he is very very cute, but the ONLY people that have permission to touch Jett apart from the medical team is Jade and Myself..


Now to catch up on the last 3 days.....

Jett

Wednesday, Day 70

Jett has still been having blood stained secretions so the Drs ordered formal bloods to check his coagulation factors and his liver function. I wasn't aware they would need to take blood from an artery, so I gave permission over the phone to do it without me there. (I thought it would be from a heel prick) Silly me. I got to the hospital shortly after and his left leg was all swollen and bruised. I was told a registrar had attempted it.. I was so fucking angry. It was my understanding that Jett is CONSULTANT ONLY when trying to get blood and venous access.. Plus I was angry at myself because I wasn't there for him while they were doing it :(..

Anyway, later that day the consultant came to do it. I was made aware that he didn't want me present while he was doing it, as he said it makes it harder for him when parents watch.. I explained that I wouldn't watch I was simply there to be there for my son, hold his hand and give him EBM so it took some convincing, but he let me stay if I promised to turn away and not watch him.. I was happy to not watch I just wanted to comfort Jett as much as I could. I'm glad I did stay, as it took Dr C 2 attempts to get the blood. Jett was madly sucking on his dummy and gripping my finger so tight.. My poor baby.. In the end they couldn't test for the coagulation as the blood clotted.. (Ironic lol) The liver function test came back and it was elevated. That is due to the TPN. They will just monitor it.. Dr C is still undecided whether he wants to get more bloods, but they gave Jett a vitamin K injection just in case there are problems with him clotting.

Later that night I got a cuddle. I love cuddles with my boy.. I never ever want to let him go! He was asleep when I was holding him, but so very alert later on that night! I can't believe how different he looks dressed and in an open cot!! I even managed to get a nice pic of him with his eyes open, which is a miracle, normally he frowns because he hates the bright light..

Her are some pics of him in his new open cot!


















Thursday, Day 71 10wks old today!



OMG look at my baby!!!!

Today was such a milestone! With a bit of creativity with a pair of scissors, we managed to dress Jett in his own clothes! I only had to cut out one arm for his central line and when the pic is taken from the right you can't even notice lol.. He looks very very cute!!! He was washed and weighed yesterday, he is now weighing in at 2666gms! He is getting so big. I wish I could take him home.. If only he'd been born now..

His oxygen requirement was higher today at 40% and his carbon dioxide was high at 85. He is compensating with his PH level, but still, it's very high. He is still having very very thick blood stained secretions. Dr C is still undecided whether or not he wants to do repeat bloods for coagulation. I don't think much else happened, I am just in awe of my beautiful baby who looks so much like a full termer. It's so hard to believe he's so sick..

Friday, Day 72

Well today Dr C decided that since Jett is almost 36wks adjusted, it's time the parameters of his oxygen saturations were changed. Previously, the machine would alarm if his sats went below 83 or higher than 94.. Now apparently because he is much older his sats should be sitting in the high 90's always.. Now his machine alarms if his oxygen sats go below 88..

This is really annoying and a bit depressing because he doesn't always saturate that high.. This means 2 things.. 1 his alarm goes off all the time, and 2 his oxygen requirement is higher. Oxygen is a drug, and it has it's risks. I really wanted to get his oxygen requirement down, if possible to 21% which is room air, now that seems another goal that wont be met in the near future :( Today his oxygen requirement is sitting at 42% :(

It is a very stark reminder that although my baby looks full term, is big and alert (not to mention GORGEOUS!!) he is still a very very sick baby. I was advised today by the nurse that it is almost definite he will remain ventilated until after his next surgery.. That's a long time to be ventilated and his little lungs are getting more and more damaged :(.. It's also possible he could require a tracheostomy if his ventilation is going to be long term..(It's possible, not definite and his Dr would decide if this is necessary)

This journey has already been long and it's going to be even longer.. I was also reminded that there is a possibility Jett wont come home at all... I know that. I know there are still many hurdles to overcome. I know he may not come home, but it is so fucking hard to believe when you look at him. He's gorgeous! He's so alert now, so big. It's so hard to not pick him up. It's so hard to imaging that he is so sick because he looks like any normal newborn baby. (just with tubes).. So today I came out of my little world of denial for a minute but I still have hope that I will bring my Lil Jett Plane home... One day next year..

Wednesday, December 7, 2011

Big catch up - Day 67, 68 & 69!

JETT

So much has happened over the past few days..

Day 67 - Sunday

Jett had his Head circumference done as well as his wash and weigh. He is a big boy weighing in at 2530gms.. He had actually lost weight from the last weigh but that is a good thing because it was excess fluid he lost not weight! His head circumference is a massive 32cms :).. His nasogastric tube was changed and it was put down 1cm further to reach his tummy.. He is a growing boy lol. He is still having some aspirates but very light in colour and not much at a time so that is good. He is still having thick secretions sucked from his lungs and it is blood stained. The Dr isn't concerned at the moment, but they are keeping an eye on it. All antibiotics stopped today. The Drs figure he had been on them for 3wks, the bugs should be gone by now. They were worried if they didn't stop them he would end up with a bug resistant to antibiotics. They are happy just to watch him over the next few days and hopefully he wont display signs of infection.

Day 68 - Monday

Jett's platelets had come up from 59 to 72 which is great news, he has another full blood count Friday. He only has his blood gases done 2nd daily now which is good. Now the Arterial line has gone he has to have heel pricks, so his heels were getting all bruised. The changes to his levels weren't usually significant enough to make changes to his treatment anyway, so 2nd daily is sufficient.. His oxygen level is sitting well on 34%, not even being increased much for cares. Suctions however are a different story and he still often brady's when he has them :(.

Today he had his eye test.. FUCKING TWICE!! :(.. It sux and is so traumatic. He had a brady during it again :(. After the first test the Reg said he had stage 2, zone 2 ROP and he needed to be checked again in a week.. About an hour later the boss Dr came back because he wanted a look as well.. Luckily he was very quick, (no brady that time!)and he said Jett looked like he had stage 1 zone 2.. With ROP, stage 1 & 2 usually corrects itself and there isn't need for laser surgery.. Anyway, Dr Boss guy said he is low risk, so Jett doesn't have to be checked again for 2wks thank god! I want boss guy to do it from now on, he was so fast. Anyway, at least it was a better result when he did it and Jett is saved from going through it again next week.

Day 69 - Tuesday

Jett had another wash and weigh today, he weighed in at 2596 :). His oxygen was weaned down to 29% which is so good! He is able to be positioned on his tummy again and he seems to really like it.

Jett went into a proper open air cot tonight. He is dressed (in a hospital gown) and is wrapped up in his own snuggy blankys :)He looks so much like a term baby. It is so so hard not to pick him up. His skin has matured so much and he looks so good. I will upload pics when I have time, I'm just trying to do a quick update before I get too behind!

His lung secretions are still a bit blood stained but not as much, they are still thick though.. He sounds like an old smoker and gets really agitated when he needs to be suctioned. It must be so uncomfy for him.

I think I have caught up on the main events of the past few days. My baby is doing so well and I'm so proud of him.. He will be 10wks old on Thursday, I can't believe it. It's gone quick, but sometimes feels like we have been here forever! My goal is for Jett and I to be home by March.. Bring on the day I get to snuggle my babe whenever I want!!!! At the moment we are having twice weekly cuddles. I should be getting one tomorrow. I'm so excited!!

MUMMY

So many emotions right now, a friend of mine got transferred back to her hometown today (Hi Miss J, if you're reading xx) I am so happy for her, but it was hard to see her go. We have spent the past 9wks together, sharing an experience that is like no other. We got to know each other so well, in such a short amount of time. We have laughed and cried together, expressed together and watched one another's babies grow from skinny newborns to plump full termers! It is amazing the friendships you form in here. I am sad Jett and I are still here doing the same thing, when others are progressing.It is hard to see babies move onto special care then eventually home while we are still stuck in NICU. On the other hand I am glad that Jett and I are still here.. Jett's here and I am happy about that. I am having a positive day today, he looks so good, this little Bubba of mine is coming home.. Not yet, but by March!!! He just has to! He has come so far and shows such strength. Every day here is another day closer to going home. I love you my gorgeous baby boy, Mama's so proud :) I better go get some sleep now! I'll catch up more about me later :)

Saturday, December 3, 2011

Day 65 & 66

JETT

Well Lil Jettski had another eventful day yesterday. His IV tissued which meant he had to get another one. His AB's were supposed to be finished today, but for some reason he is on them til tomorrow now. I stayed with him while they did the cannula, he had been really unsettled all day, wriggling and crying, so I didn't want to leave him. I must admit, I normally leave the room when they do cannula's, that was one thing I couldn't stand to see them do, but I just couldn't leave him and figured I shouldn't be so selfish, I need to be there with my son. I'm glad I stayed, I held his hand and gave him Mam's milk on a cotton bud. Dr C did the cannula and got it in straight away, Jett didn't even flinch. He is my big brave boy!

The surgeons spoke to me yesterday about the ooze coming out of the hole where Jett's drain was and they are happy that it's gastric juices, not pus, and they are glad it has a hole to come out of instead of building up in his abdominal cavity. The main thing they were concerned about was that it would cause the skin around to break down, so they put a bag around it last night.. It's weird, it's like a proper colostomy bag, so it catches all the ooze. It is strange seeing him with a bag. I wonder if he will need one forever? So for now it's doing the job, it means he doesn't have to have dressings changed all the time and his skin around it should remain intact.

Jett also had a FBC yesterday, his albumin was 20 so he had a transfusion scrubbed into his line last night. That has now finished. His platelets were a little bit low apparently, but Dr C doesn't really talk to me much, so I'm not sure if they are concerned or not. I can't wait til Dr D gets back!! I'm just so used to her and she is very present. She always comes to talk to me. Dr C is a great Dr, he is director of NICU, he just doesn't say much..

I think that covers the events of yesterday..

Today, I got a cuddle! I just thought I would ask this morning and the nurse said it should be fine, she'd just check with the Drs, so I went to express then when I came back a chair was there for me :)




I was so happy, it was such a nice snuggly cuddle. He was really good, his oxygen was sitting really high :) I was pissed off though, I ended up busting for the toilet, so had to put him to bed earlier than I wanted.. It was nice though, I still had him for about 2hrs.

Jett's fridge is now gone! Now he doesn't have his central line he doesn't need it. I kept the sign "Jett's medication fridge" I can't wait til he comes off these antibiotics tomorrow. I am hoping the IV lasts til then..

MUMMY

I had a shit day yesterday, I just feel so helpless. I wish I could make Jett better and have him home with me. I loved our cuddles today, I'm so lucky to have him. I love my baby so much. I love and miss my little twins today. I wish I could cuddle them too :(

Remembering Jett's big brothers today...

3 years ago today, Jett's big brothers died. Today I remember them and everything they brought to my life

http://taiteandseth.blogspot.com/ (Blog)

http://www.youtube.com/watch?v=nwKueKkuSEA (A montage)

For some reason the links aren't working, but you can copy and paste the links into the address bar..

Thursday, December 1, 2011

Day 63 & 64 - 9 weeks old today!!!

Jett

Well Jett Plane had an eventful day yesterday. We had a cuddle which was soooo nice. He had been weaned down to 34% oxygen which was really good. During the cuddle he was sitting on about 40% but maintained high sats for most of the time.. It was a long 3 hour cuddle and he looked pretty peaceful in my arms :)

Unfortunately yesterday he couldn't escape a blood transfusion :(. His HB was 76 on a formal FBC. After his cuddle Dr C put a cannula in and he got his blood. Luckily the cannula went in straight away. It's good his little veins have been given time to recover.

Jett's arterial line lost trace also yesterday so it was taken out. Now he has to have his heel pricked to get blood. Luckily they are only doing daily blood gases and 3rd daily full blood counts.

He is still not liking his head turns and suctions. He has had thick mucous plugs in his lungs. He had a major brady yesterday while they were suctioning him. They had to bag him and he still didn't respond so they hit the emergency bell. As all the Drs came in his heart rate came back up, and within no time he was back to normal rate and pressures on his ventilation. It happened again this morning too, except he responded to the bagging. It's a bit scary when I see it, but I didn't freak out as much this morning because I know how quickly he recovers. It's these bloody suctions that set him off. The larger tube must be really irritating him. A nurse mentioned this morning that Dr C (who is taking over while Dr D is away) was thinking of extubating him, but his carbon dioxide was too high.. It was the 1st I'd heard of it. It's a bit scary, but I would be happy if bub was on CPAP in the next couple of weeks. It would be great to get rid of that tube. Only if Jett's ready though!

I also found out that the surgeons are using 3kgs as a ball park figure to when Jett might next have surgery. It doesn't mean he will, when he gets to 3kgs, but it's a goal to work towards. He is 2.2kgs now, so 800gms to go. Could be in a month or so.. They did say it wouldn't be before xmas, it may be soon after. I'm not sure how I feel about that. I'm scared of him having surgery, but we can't really move forward if we don't.. I'm just scared he wont survive the surgery. Or that he wont have enough viable gut to keep him alive.. It's just scary all round, but something will happen one day. He can't stay ventilated on TPN forever..

Today his drain site was oozing more than it had been. His dressing was changed this morning, so I really noticed it. I voiced my concerns to the nurse and she paged the surgeons but they didn't come. I'll make sure it's handed over in the morning. It doesn't really matter that it's oozing, it's probably better that the gunk is coming out, rather than staying in his abdominal cavity it's just different, it's darker and there's blood in it. Anyway the surgeons will be around tomorrow no doubt and the Drs know about it..

I think that's about all. Today Jett was fairly settled. He always goes red after a blood transfusion. His ventilation has been stable, only having oxygen increased to 40% for handling, otherwise he sits on about 34 - 35%.

MUMMY

I'm going well. I'm really happy, I have been off antibiotics and diflucan for a few days now, so I have clean milk again Yay!

I'm going for lunch with some of my new friends tomorrow, I can't wait. I'm going to have a nice juicy steak and a wine lol... I'm really happy I have made friends here :)