Day 61 & 62.. :)

LOL Check out Jett's angry face :) Soooo cute!





JETT

I'm really enjoying watching my Son's personality develop more and more every day. He is so strong willed, definitely not shy of letting anyone know when he's unhappy! He has the cutest lil angry face and also the cutest lil smiley face. Oh hell, every face he pulls is cute!! I'm just so so in love!!!!!! *Gushing over now, I can't believe I'm one of those mothers lol*

Another awesome couple of days, bub has been really settled and his oxygen has been sitting steadily on 37%. He has been tolerating head turns and today he had a wash which he tolerated really well. He didn't have his ventilation increased at all and still maintained his oxygen sats :) I'm wondering if it is because he has his big boy tube in?

Jett has also been impressing the nurses with his suctions.. They have been getting out the thickest secretions.. It's gross actually lol, but he must feel so much better after. The Drs have also increased his fluids and TPN as they are using his weight of 2265gms as a working weight! His edema has gone down, although not completely gone, I hope the increase in fluids doesn't make it come back..

Jett's HB was a bit low on his blood gases, but he escaped a transfusion because his FBC showed a HB level of 87 and that is more accurate. Praying his HB doesn't drop, I don't want him to have to have an IV put in.

I did a rough length measurement today, he is approx 43cms long!! His head circumference is 31.5cms :) I can't believe how big he is getting. He is actually big enough to fit into premmie size clothes. He can't though because of all his lines.. One of the Mums was joking today by the time we can dress him he'll be in OO size, he's getting that big lol.

Dr D has gone away and I'm still unaware of who has taken over.. Dr D said it was Dr K, but I haven't seen him yet, then a nurse mentioned she thought Dr C has taken over. I'll find out tomorrow.

I am having a cuddle tomorrow, I am so excited! I just hope he handles the transfer well. He did last time, so it shouldn't be a problem. I actually think my baby is getting cuter by the day :) He soo loves his nappy free time, I try and give him as long as possible, then he screws his little face up and bends his legs when it's time for the nappy to go back on lol. I have increased his breast milk lolly pops to everytime I express at the cot. He sucks it and sticks his tongue out, I wish I could feed him properly..

MUMMY

I have been good, apart from the pain in my breasts. It is absolute hell, but I can't do anything about it, so I just have to deal with it. I am focusing on the goal that one day I will be able to breast feed my baby and then it will all be worth it.

Last night a baby died, it was really sad, it really brings me down to Earth and makes me realise that yes, this NICU journey is hard, but everyday prem babies are dying and I am so lucky that I have my Lil Jettski still with me. On Saturday it will be the twins 3rd year anniversary of their death. 3yrs ago, it was me whose babies died. I wish I could give those parents a cuddle, but I didn't know them, and I haven't seen them since.

When I think of my children, I am so grateful for the things they have brought to my life. I have met some of the most amazing people, if Taite and Seth hadn't existed I may not have met them otherwise. Same for my Lil Jett, I have become friends with other parents of prems, and I think they will be lifelong friends. It makes being here a bit more normal. To be able to have a chat and a laugh right by our baby's cots is so good.

I have definitely adjusted to the NICU life. I know this because I feel like I am living rather than just existing. It is hard to explain to people who haven't experienced it. It definitely helps having friendships, it brings normality to your life.

Well, time to express now YUK :/

Day 59 & 60

JETT

Day 59

Jett had a really good day, he had minimal handling, only getting touched by me doing his cares and his nurse doing his suctions, he was sitting on 40% oxygen and was really comfortable. He was handling his suctions and head turns a lot better than he had been and the nurse put it down to his albumin transfusion he had overnight. It helped with his fluid retention and made him more comfortable :)

Unfortunately though he had to have his tube re taped :( So much for minimal handling! He rarely has days where he is just left alone. He coped really well though with no bradys :)

Apart from that yesterday was a quiet day, with no changes to his ventilation.

Day 60

This morning when I came in my lil baby was a bit unsettled, wriggling and crying :(. I did his temp and it was high, but it must have been the position of the temp probe not reading properly and making his cot hot. By the time I did his cares and settled him his temp was back down to normal thank god, and he was really settled again. (His temp probe was also adjusted)

He was weighed today, he's a huge 2265gms! A lot of it still would be fluid, but he should be 2kgs we think. He's getting so big, imagine how big he would be if he was on Mama's milk! When they weighed him he had a bed change, so while they were getting the scales and his new linen ready he had some nappy free time. He loves it, kicking his legs and lifting his bum up. I wish he could have more nappy free time, but it is really hard, because if he wee's on the sheets it's quite an ordeal to change them. I give him as much nappy free time as possible though it's good for him and he enjoys it so much.

I don't think anything else happened today. Jett's Dad visited for a whole 1hr today. I went back after he was gone while Jett had another head turn. He didn't like it and had a bit of a brady, nothing major though and his recovery was quick. I hope he has another settled day. He is so much better than he has been. He has to have his dressings around his drain changed today though, I doubt he'll like that :(

MUMMY

While Jett's happy, I'm happy! As I said above he has been much more settled and comfortable so I'm glad. He was doing the smiley face he does so much yesterday and this morning. It's soooo cute!!

Today was an exciting day for a couple I met up here. They got to take their twins home after 10wks and 2 days :) We became good friends because the twins were in the same room as Jett for quite sometime. I'm so excited for them, and I can't wait til that day comes for Jett and I :)

Day 58

JETT

My lil babe looks good today, his HB is a little low at 97 and because there aren't many changes being made, Dr D has cut back blood gases to only once daily and his full blood count every 3 days instead of every 2 days so they aren't taking too much blood off him. His albumin was 19 so he is having some transfused tonight the nurses will scrub it into his line. Ventilation is still the same, it depends what nurse is on as to what his oxygen sits at. Some prefer to leave it higher to prevent frequent desats, others test his boundaries a bit by leaving the oxygen lower. Although he does desat frequently, he almost always recovers quite well on his own.

He had a wash and weigh today. His weight was 2106gms.. It is not an accurate weight though, he has so much edema, but still, some of it is him and he has put on a bit of weight... They are still using the weight of 1.6kg to calculate med doses.

I forgot to mention, last week I measured his length, although it's not really accurate, he was about 41cm :). Last time he was only 37cm, he's definitely getting longer. His HC is about 30cm. My babe will be 34wks adjusted tomorrow.

MUMMY

I feel a bit emotional tonight. It's hard watching my babe get stronger, but know he's still so sick. He fights the ventilation tube, I just wish he was strong enough to come off it. I love my baby so so much. He hates me reading to him, but I keep trying different books from time to time and tonight I found one he liked. His sats were sitting on 96% :) I am about to go back soon. I miss him even in the couple of hours I come back to have dinner. I hate that I live on a time schedule and I can't just eat when I want. (Well I can, but eating means being away from him) I am so over expressing. I got some avantan cream from the dermatologist today, and there is a crack in my nipple, so I will use lanisoh on that. It's so painful. I dream of feeding my baby normally. It just seems so out of reach. I have to believe though that this is all worth it and we will look back on this in years to come and it will be such a short journey compared to the rest of our lives..

Day 55, 56 & 57. Jett is 8wks old!

JETT

It's been a big few days so I'll do some things in point form to save time..

Day 55

Lasix infusion started - Saves breaking the central line if Dr D needs to increase/decrease the dose.

Gentamicin started - In case Jett has any more bugs. His platelets aren't going up, so it's possible he does. Dr D not too worried though as he's not showing any other signs of being sick.

Average oxygen sitting on 36%, rate and pressures still the same.

Day 56

Surgeons speaking about taking out the drain in his abscess. It's not draining anything, so there isn't much point in it being there. It is only a portal for infection if it stays.

Average oxygen 35% - Jett is having desats but is recovering fairly quickly without increasing his oxygen requirement. Rate and pressures the same.

Jett is hating having his 3hrly head turns, and sometimes needs increased oxygen and ventilation to deal with bradys and desats.

Day 57

A big day for my Bubba today.. Drain in abscess came out. He coped really well, his oxygen was only increased to 40% and he didn't desat or brady. The drain came out really easily which was good there was no pulling or anything. Jett was given a bolus dose of morph and medaz though to relax him 1st. There is a hole where the drain was which is covered by a dressing, but the surgeons didn't want it held together with steri strips. If there is still anything to drain out, it can still drain out the hole which is what they want. It has oozed a little bit, but not too much.

The other big thing that happened today was Dr D replaced his ventilation tube. He had outgrown the one he had, it had been in since he was born. I was worried it would be traumatic, but Dr D gave him enough M&M's to go to sleep. She ended up giving him 4.5mls because he has become a little resistant to it and wouldn't go to sleep! It took him about 25mins because they started the M&M's in 1ml doses.

Hopefully this new tube will improve his breathing enough to wean him off. Dr D is happy to wean him if Jett is showing signs of coping. During the vent tube change and the circuit change he had had to be bagged and both times my strong boy did most of the breathing by himself! I'm so proud of him! The only concern with getting him on CPAP is that it could increase the air in his gut. Dr D said we'll cross that bridge when we get to it, at the moment she is happy with everything he's doing. The brady's he has are totally normal and his rate of ventilation is low considering what my boy has been through.

Although Jett having brady's is normal, it's not nice to watch.. Lets just say purple isn't Mummy's favourite shade of colour! The nurses are really calm during the resus and he recovers very quickly.. They haven't had to bag him, all they do is increase his ventilation til his HR returns to normal, then it's weaned straight back down..

I think I'm all updated! Not much really changes, my boy just plods along, going with the flow. Things only change when Jett says it's time. Surgery is a long way off yet though, when Jett's ready, he'll let us know!

MUMMY

Oh god, where do I begin? I have had a big few days too...

I had my D&C on Tuesday, I had a spinal with sedation which was effective. I recovered really quickly and in no time at all I was harassing the nurses to take out my catheter so I could go and see my babe. They were reluctant at first, but then they realised that I wouldn't give up, so relented at last. By 10pm that night (Op was at 12) I was walking with my catheter out and down to see my baby!! I hadn't seen him since 7 that morning. I missed him so so much. I had stayed with him the night before.. I slept by his crib in a recliner. It was the best waking up next to my baby. I can't wait to have him home.

My birth trauma didn't come up, except for when I was being wheeled into the anaesthetic bay. I had flashbacks because that's where I birthed my Son under very traumatic circumstances. I coped well though and I'm glad it's over and done with now :)I am on augmentin until I finish the course then thats it.. Hopefully I can work on getting my milk clean again! I am still on the diflucan but it's not making any difference. I am seeing a dermatologist tomorrow which will hopefully fix my last health issue :)

I was tossing up whether or not to make this blog private as it seems someone thinks they can take information out of it and use it against me.. As I read back on these posts though, I know I have done nothing but speak raw truth about myself and my son. People can be confronted by that, I guess, but I have decided that it's their issue, not mine, so I wont stop blogging and I wont stop sharing this journey with the public. I truly believe this can help someone one day. If just one person reads this and can relate and find comfort in the fact that they are not alone it's worth it. I'm not doing it for that reason though, I'm doing this so that when Jett's all grown up and I am old I can look back on this and say "Wow, Jett, we did this. We survived this rollercoaster together" and I will feel proud that I never gave up being true to my Son and myself. Fuck what anyone else thinks!! :)

Day 54 - Taite and Seth's birthday

Cuddles with Mama!!! (If you click on the 1st pic you can see some of the lines etc.. It really was a production. It takes 3 nurses to transfer him and his lines. It's a wonder they could ever untangle him Lol)

JETT

Today Jett and I wished his brothers happy 3rd birthday, and celebrated with a cuddle! I had to cradle hold him, but that was ok, I got to look at him and stroke his head. He loved it.. He is still on 10mcgs of Morph and medaz and was given a bolus dose before he was transferred onto me. It was quite a production with all his lines, and of course the fridge had to be moved! We had a beautiful 3hr cuddle. He has still been having a few desats, so his rate and pressures were brought up on his ventilation a bit, which prevented any desats.. Dr D was really happy with how he coped and is happy to make it a regular thing.. I think the nurses will chuck sickies on cuddle day. It's really a lot of work for them before and after.. Like Dr D said though "Oh well, we do what we have to do" God I LOVE her!!! She really has the best interests of not only Bub, but Mum at heart. I couldn't have asked for a better Dr.

Jett had his eye test this afternoon :( I had spoken to Dr D about putting it off. They normally have it at 32wks (adjusted) but Jett was only a few days post op so they left it til this week. Dr D explained the importance of having it because it can pick up early signs of ROP (Retinopathy of Prematurity) and sometimes laser surgery can prevent them going blind if it's caught early.. Jett is in a high risk category because of the amount of oxygen he has needed as well as him being so early.

Anyway, the test was awful. I gave him a breast milk lolly pop (soaked a cotton bud and swabbed his mouth!) and held his hand. They give him drops to dilate the pupils then local anaesthetic drops then they retract the eye and look at the blood vessels at the back. Jett hated it, he had major desats, even though his rate pressures etc had been increased, and he had a bradycardia.. It took him a while to recover, desatting and having another brady. It is awful and I'm so glad I was there to hold his hand. I cried after they did it. He was so unhappy. My poor little baby. He was gripping my hand so tight :( The result was good!! I was shocked.. He does have to have repeat tests though. His next one is in 2wks.

He has such busy days, no wonder he gets so tired!! He's such a beautiful brave boy!

MUMMY

I had an awesome day (apart from Jett's eye test :( ) I put on make up and felt good. I can't believe it has been 3yrs since my precious twins were born! It was such a beautiful day, it was really nice to get out in the sun and release their balloons. Having a cuddle with Jett was special too of course!

I am feeling positive about my procedure tomorrow. I am hoping it will be a miracle cure Lol.. Once all this crap in my uterus has gone, maybe my milk will increase and my body will start to heal! I'm not anxious about it at all, I just want it over with! Mum has booked her flight, she goes home the end of the week. Not thinking about that yet!

Day 52 & 53

JETT

Over the last 2 days Jett has been more settled on the 10mcgs of Morph and medaz thank goodness. Yesterday his rate was brought back up to 35 from 30 and his PIP up to 16 from 15 as he was having too many desats. Jett once again showed his authority yesterday when his arterial line lost trace. The nurses weren't sure they if the could save it and were thinking of taking it out when Dr D came along and she repositioned it, explaining that Jett only like's his art lines taped a particular way lol.. I was so glad it didn't have to come out, because it wouldn't have been nice having to have another one put it.

Jett also let the surgeon know he wasn't too keen on the idea of surgery by having a major desat when she touched his foot! The Surgeon (Dr R) said his next surgery wont be until after xmas. It's not far away, but in a way it is. I am a bit worried that in that time something will happen to force them to operate earlier. I hope not. My goal now is for Jett to be off the ventilator and on CPAP for xmas.. I am praying he gets strong enough in the next 6 or so weeks to pull through this surgery and have enough viable bowel for Dr R to be able to do something. In the meantime, his TPN has been increased which has caused him to become even more puffy than he was. When he has his head turned the side that he has been laying on is totally flat and he can't open his eyes :(.. Poor Baby. His platelets had dropped again yesterday, but Dr D wasn't too concerned.

Jett will probably be having the drain in his abscess taken out maybe next week. It doesn't seem to be draining much, so no need for it to be there. The drain in his intestine will be staying.. One positive, at least he will stay in an open cot while it's in and Mummy has better access.

MUMMY

I'm in pain and over it. Can't wait to feel better physically, then it might be easier to deal with the emotional stuff. It's so hard seeing Jett ventilated day in, day out. We don't seem to be moving forward. In a way I'm glad surgery is a while away because I know he may not survive. I really want him to be here for xmas. It is hard though, I hope he can get stronger and get off this ventilator soon. I would like him on CPAP by xmas. I don't know what other goal to work towards.

It's Taite and Seth's birthday tomorrow. I miss them so much. If I didn't have Jett I would be a sobbing mess probably not getting out of bed, but I have to for Lil Jett. I really hope I have a nice day tomorrow. I am looking forward to my cuddle :)

Day 51

JETT

My poor baby was so unsettled last night and this morning, he kept moving then screwing up his face crying :(. He must have been in pain after his big day yesterday.. The Dr put his morph and medaz back up to 8 from 4mcgs then we did his cares. After that he was still no happier so he had a bolus dose of morph, then eventually they put his infusion back up to 10mcgs. After that he settled thank god. It's so awful seeing my baby in pain..

His platelets had dropped a bit today, but Dr D isn't worried. She expected it after what went on yesterday..

Apart from all that Jett has had a well deserved quiet day. Dr D thinks I'll still be ok to get my cuddle on Monday so I'm really looking forward to that. It will have been 2wks since I have held him.

MUMMY

Big day for me today, lucky Mum was here because I spent most of the day at the Obsteric review clinic waiting to speak to the anaesthetist, having bloods taken etc. My D & C is booked for Tuesday. I am not happy it has to be done, but glad that it will be finally over with. The Dr did a speculum exam and my cervix is open full of clots. She wanted to do something ASAP, but as I'm considered high risk they want to do it in daylight hours, during the week so Tuesday it is. I am scared of Post traumatic stress disorder relating to Jett's birth. When I had bloods done today it was awful. The needle went in but he lost my vein so was digging around for it. It was painful and took me right back to theatre after Jett's birth. I had to tell him to stop and try the other arm. I was a crying mess. I can't believe how a simple blood test can make me feel this way. My birth trauma had been pushed to the back of my mind in the too hard basket, but this is bringing it all back.

The anaesthetist suggested I have a spinal for the D & C. I nearly had a heart attack, the thought of being awake if I start hemorrhaging is terrifying, but I know it would be better than having a general anaesthetic. So we then spoke about having a spinal with light sedation. Maybe that will be an option. Anyway we can discuss it on Tuesday.

It's going to kill me being away from my baby all day, and I have to stay in overnight, most likely in ICU, so i wont be able to see him then either. So glad Mum is here to sit with him. I might even see if I can stay with him all night Monday night. I so can't wait for my hold on Monday, because of his drains I have to hold him in a cradle hold rather than skin to skin. Although I would prefer skin to skin cradle hold will be good too because I will be able to stare at his beautiful face. I just love looking at him. He pulls all these weird facials, he's soo gorgeous!! I just can't believe I have a 7wk old baby. I can't believe he's mine. I am so glad he's still here and fighting on everyday. I can't wait til I can take him home and just be a normal Mama.

Day 50 - 7wks old today

JETT

Well another big day for my baby today. His HB was 79 this morning so Dr D couldn't hold off on doing a transfusion any longer, so my Baby had to have another IV.. Luckily his veins have recovered a little bit so Dr D got it in his leg and it didn't take long.. After that the surgeons came to put a little bit of dye in the drain that goes into his small intestine. He has a T tube in there and they suspected that it may have come out. Sure enough, the dye oozed out next to the drain on the other side which indicated dye had gone into his abdominal cavity and wasn't contained in the bowel. 2 reasons this could happen. 1, it could be because of a perforation, either an old one or new one or 2 One side of the tube could have come out. They were with him for 5 hours gradually putting in dye then x raying him. The surgeon that did his actual surgery wasn't there today, but they spoke to her on the phone and at this stage they aren't going to do anything. Removing the drain would mean surgery and they aren't willing to do that yet.

No changes to his ventilation today.. His carbon dioxide is a bit higher than it has been, but still within the range that Dr D is happy with. She is happy with the rest of his blood results. His platelets are coming up all by themselves..

My brave baby Jett tolerated all the handling well. He is so clever.

MUMMY

Well I have had a fucked day today.. I was out of the room for most of the time when the surgeons were there because they were scrubbing his line in,plus I had to sort shit out with centrelink. When I finished at centrelink I called and found out the surgeons were still with him. I got there after quiet time and they were STILL there, I totally panicked then Dr D took me in to show me the xrays.. At that stage she hadn't spoken to Jett's surgeon so they weren't sure what the next step was. It was so scary to think he may have had another perforation..

Then my day got worse when the Obstetric reg I see came to find me in the nursery. Fab news: I have to have a D & C.. Which means a general anaesthetic.. Fucking great. Thank god Mum will be here to sit with my babe. They are getting a professor to do it instead of a reg or consultant because I am considered high risk after everything that happened after Jett's delivery. All I asked is that they don't do it Monday. It is Taite and Seth's birthday and I want to have a cuddle with my only living son.

I am scared about going to theatre, I am scared what would happen if something happened to me. Normally I wouldn't worry about this stuff, but it's brought up all the fear after what happened after Jett's birth. I really need a break. I am so stressed and my milk is suffering. It doesn't help that I can barely express without being in agony..

Having a bad bad day today :(

Day 49

JETT


Pic 1 - Lil Jett with his eyes open while his Mem (my Mum) blocks the light from his eyes!

Pic 2 - My Baby is taking over the nursery! Has his own bar fridge next to his cot..

Pic 3 - Even in the hospital, you can't escape Chrissy decorations

Pic 4 - My baby loves holding his glad wrap blanky :)

Another good day today with bub's ventilation. The surgeons came to see Jett this morning and took the steri strips off his scar. I can't believe it's healed already! It is barely noticeable! They were thinking of taking out the drain in his abscess but although it's not draining anything through the drain, serous fluid is coming out all around it so they want to leave it in for now..

Bub's rate is down to 35 again, Pip 15 peep 6 and he's around 30% oxygen. A bit higher for handling.. Jett is so brave, when the surgeon was poking around his tummy he barely reacted. Unbelievable! His morph and medaz are down another 4, so he is on 12mcg.

He had his tube re taped today. He has another skin tear on his face :( Only tiny, his skin must be so fragile. The nurse was very careful and used loads of remove.

His blood results were good, his platelets are still coming up by themselves and his HB is still high enough to escape a transfusion. He is still puffy but he doesn't need an albumin transfusion just yet.

When the nurses had to redress around Bubs drains he had his nappy off.. Jett loves nappy off time :) He also loves having his feet massaged when I change his sats probe. It's very cute.

MUMMY

I am going insane I'm so tired. I expressed this morning and fell back asleep and didn't wake til 8. I freaked because I wanted to get there to see the surgeon. Luckily I made it and all my anxiety went away once I saw my beautiful son :)

I went to ORC today to see about the results of my ultrasound and basically they said they are not sure whether it's retained product or an AVM and no one wants to send me to theatre because I am too risky. They were having a big meeting with consultants today and were hoping to make a plan. Unfortunately my consultant wasn't there so they are going to try and chase her down tomorrow. Both these conditions (retained product or AVM) can cause major issues (AVM can be life threatening) if left, so someone will have to do something soon. I don't want to have to go to theatre when Mum goes home. At least while she's here she can sit with Jett when I can't. My nipples are still really sore. I have to hand express out of my left side because its too sore to use the pump.. I'm really really going insane with it.. If the diflucan doesn't work, a dermatologist is my only hope. I don't want to lose my milk supply, so expressing 8 times a day with sore boobs is just what I have to do. I am under so much stress, not only with Jett, but with other stuff too. Luckily I have heaps of support from my friends. Everyone is doing everything they can to help me. Things will be sorted soon hopefully. I just have to believe in it all working out.. It will be all worth it when Jett comes home and we are both healthy!

Day 48

JETT

Last night I went to do Bubby's cares and he had been moved. The light in his new room was very bright and he didn't like it. I didn't like having him in that room, we want our old spot back!

He had a couple of brady's last night, but recovered quickly. It makes me paranoid.

His vent rate went back up to 40 last night with the move. He was desatting and just not recovering. They also increased his PIP up 1. Today though, the pip has been reduced although the rate has stayed the same.

There's talk about the drain that's in his abscess coming out, not sure when, but probably in the next few days. His Morph and medaz have been weaned a further 4mcgs, so he's now only on 12. I really hope he still has some M&M's on board when they remove the drain..

Nothing much changed today, he was looking a bit more puffy this arvo, but his urine output is still good so they are just watching it.

His HB was 89 and originally Dr D wanted to transfuse if it was under 90, but it means having an IV put in. She said she'll wait til it gets to 80 before transfusing, hopefully his veins would have recovered a bit and IV access might be a bit easier. They are only doing 8th hourly gases so they are not taking as much blood from him.

I am used to the room he's in now.. It has the most windows, so during the day he is in mostly natural light which is good. There is also a park we can see from his window, that's where we are going to release balloons for Taite and Seth's birthday on Monday.

MUMMY

Today was not a good day for me. The fact that my baby may not make it was at the forefront of my mind for some reason.. I woke up and just wanted to cry... All day. I really hope tomorrow is a better day.

The thing I hate about Jett being in an open cot is that he hates bright light and in the open cot he isn't shaded from it like in the isolette. He seemed a bit better with it tonight, although the lights weren't too bright. If it's really bright when I go back they'll have to do something about it. He squirms and squints his eyes when it's bright. I couldn't imagine trying to sleep in that either, poor baby.

I went and got a massage today. I wanted an hour, but I started getting anxious being away from the nursery. A nurse had him that hadn't had him before so I wanted to make sure I was there for his cares. I still enjoyed a half hour massage though, then got back to my baby :) Tried giving him as much nappy free time as I could but he needed a suction, so it wasn't long.. He loves kicking his little legs..

I bought a diary that I keep by his cot. In this blog I write a lot of clinical stuff, so in that I want cute personality stuff. So far one nurse has written in it, and I wrote him a letter. If I can write down what his personality is like on that day, I think it would make an awesome keepsake and an interesting read for when he comes home. It's also nice to know what nurses are looking after my Babe and what side of his personality he displays that day.. :)

I am so tired. I went for an U/S today and whatever is going on with my uterus is still going on. My cervix is open and my uterus is full of clots. The radiologist said it hadn't changed since my last scan 4wks ago. She also thinks it isn't retained product it's an Arteriovenous malformation (google it, it's too hard to explain :) lol) Either way, my body has issues. I can't believe that all I have ever wanted was to have kids and I have had so much trauma associated with it! My Lil Jettski is worth it though, it's just really hard knowing he is it. No more kids. He simply HAS to make it!!!!

Day 47

JETT

My boy had a big day today.. Last night his IV tissued and Dr D had already said that because he is very hard to get IV access, another central line would be put in. So today it was. They got the Director of NICU Dr Cartwright to do it. He got it in first time :) So Bubby now has 2 central lines and an arterial line. He handled it so well though, my brave boy.

His ventilation has been weaned AGAIN! His rate is now down to 35! WOW! Lol. His platelets are starting to come up by themselves and his HB is ok, so no transfusions.. Dr D is really happy with him, that infection is still at bay, blood cultures are still negative :)

Jett is now weaned off ALL BP meds :) :) :) His morph and medaz were weaned to 16 this morning and Dr D will hopefully wean him by 4 everyday til he's off.

The new AB he started yesterday is called vancomycin. He is now only on lasix once a day instead of twice and his edema has gone down soooo much!

Today he was so cute, when I did his cares I left his nappy off for ages. He loved it, kicking all over the place, lifting his bum up off the bed. He is so strong. Then as soon as I put the nappy on he peed, but he didn't wait til I got the nappy done up so it went everywhere.. It's the small things like that that make me feel like a real Mum. :) It is awesome with him being in an open cot. I have heaps more access to him. He will be in an open cot for a long time yet. Probably until the drains come out.

He is getting moved out of his private room. It was supposed to be earlier today, but there was a delay so he might be moved by the time I get back tonight. We have gone into a different room than he was in. It is the room Taite was in when he was first born. Disappointed we can't go back to our room, but there is a good medical reason so I'm totally happy with the decision made.

I am amazed everyday how much my babe is improving. I am hoping with every fibre of my being he is telling me "Mum, this is a sign I'm coming home" I need this Baby to come home. I am so so so in love!!! He is so responsive to mine and Mum's voice. He knows exactly who I am.. He does that smile when I talk and trys to open his eyes. He couldn't quite get them open today. He gets the shits badly. Such a strong little personality!! Strong like his Mama :) :) :)

MUMMY

I have a little lump in my belly and it hurts so off to ORC I went today. They seem to think it's from the clexane injections but I'm not so sure.. Anyway, I have an U/S tomorrow, so hopefully if anything is there it will show.

BOOB TMI :)

I got the Dr there to call my cardiologist at Prince Charles and ask if I can take Diflucan for my thrushy boobs she said yes!!!!! I am so hoping this works.

I am seeing the psychologist regularly, I saw her today and we discussed how they could help me if we had a bad outcome. I told her to drug me... But wait til after the funeral because I want to plan it myself.

I am feeling good today though so don't want to talk about that.. I'm not in denial though. I have thought about it.

Apart from that I feel good. My relationship is over, but I'm good with that. No loss. I have been doing this NICU journey by myself (well with Mum) so it makes no difference. I don't have any energy to focus on anything or anyone but Jett. My boy is my world..

Day 46 :)

(The last post was written Saturday 12th not Fri 11th, the date has displayed wrong because I started a post on the 11th but completed it on the 12th.)

JETT

Jett is again doing beautifully today :) His pressures and rate have come down overnight and today. Ventilation details are: Rate 55, pip 16, peep 6 and he has been on about 23% oxygen most of the day, only increasing it for his cares.

He had a minimal sponge bath today and a bed change. He handled that so well. His oxygen was increased but his pressure and rate was left the same and he didn't desat once! Totally different to 2 days ago where he had a major brady and desat..

He also had his tube retaped. I hate that, it's so traumatising. He now had a skin tear on his face :( I don't think the nurse used remover to unstick the tape.. If she did it wasn't enough.. She applied bactroban (I think it's that) to prevent infection.. I will NOT be happy if his face gets infected..

So all in all he has had another good day, the only concerning thing is he has had 7 and 8ml aspirates. Not really sure what that means, the Dr didn't seem too worried. I am scared his bowel will perforate again. He didn't show symptoms last time, but I am hoping that because his ventilation is being decreased that is a good sign that all is ok, it's just part of the healing process.

They have changed his AB's again. I can't remember the name of the new one, but the gentamicin and fluclox have been ceased, so now he's on 2 types of AB's.. Praying that it works and this infection doesn't spread. His HB is 92 so no blood transfusion, he isn't really symptomatic anyway.. His BP is good, the only medication he is on for that now is the hydrocortisone. The dopamine and dobutamine are gone.. Yay!!

List of drugs at the moment:

Meropenem
new AB (I forget the name)
Lasix
caffeine
hydrocortisone
Morphine
medazalam
KCL & Sodium are added to his TPN..

I think that's all, but he has certainly tried out the pharmacy :)

MUMMY

A fairly good day, except when the nurse talks to me about Jett she speaks like he's going to die. She was saying things like "Just enjoy make the most of every day with him and know that you have learnt from his journey" Umm, I'm kinda hoping I will CONTINUE to learn from his journey, and this journey isn't over. There was other things she was saying but I can't think of them now..

I can't believe how Jett looks. He looks so good. He still has a lot of edema, but he is a good colour and is very active despite being on 20mcgs of morph and medaz. He was wide awake today for his cares and bath. We had the best eye contact this morning.. Now he is 32wks adjusted, he is due for an eye test. They wont do it this week, but I'm sure they will do it soon. I'll ask Dr D tomorrow.

TMI about boobs (AGAIN)

My nipples are still very very sore. I have stopped using daktarin and am now using canestan cream on them.. I am really hoping that clears them up.. If not I will ask my cardiologist if she really thinks it's risky to take the diflucan tablet. I must have systemic thrush, it is so persistant and I think the tablet is the only thing that will get rid of it.. I have tried everything else! Lets see how the canestan works. Fingers crossed...

Day 44 & day 45 :)

JETT

Wow! I am so amazed at my little Jett Plane's strength. Yesterday, 2 days post op, he was able to be brought down on his ventilation pressure and oxygen.. I am amazed that he has recovered so well from what was a huge operation.

The biggest event yesterday was he had a bed change (Yay he's back to sleeping on his own sheets!) He didn't handle that too well, having a brady and his oxygen saturation went down to the 40's.. My Amazing Jett recovered very quickly though as soon as he settled and was back to 25% oxygen.

The Dr's had taken a sample of what was coming out of the drain in his abscess. The results came back that he has a staph infection :(.. His blood cultures are still negative though, so no blood stream infection, and by the results of his bloods Dr D said it looks like we are staying on top of the infection. They have changed his antibiotics so now he is on Gentamicin, meropenum & one more which I forget the name of.. I'll ask again.. It's Fluclox :)

Dr D was so surprised to see Jett had a staph infection, rather than a typical gut bug.. She said Jett certainly is full of surprises and "Beats to his own drum" I thought that was cute and it certainly is true.

I am looking for Jett to stable enough for a cuddle on the twins birthday. Dr D thinks it is on the cards, but it wont be a long cuddle and no skin to skin cos he can't be on his tummy.. Thats ok though.. Any cuddle is better than no cuddle.

He is still on morph and medaz for pain, but he has weaned off 1 of his BP meds and the other is really low dose :)

Today Jett has continued being great. His pip has been reduced to 20 :) He was on room air (21% oxygen) for a bit today, but had to go back up to 25%. That's still so good though. He has low HB so will probably have a blood transfusion soon. He had albumin yesterday and he is on lasix twice daily.. I didn't want him moved yesterday so the beautiful Clinical Nurse Consultant spoke to me and kept us in the private room. It is good in there, we have lots of space. Bub is still in an open cot with glad wrap as a blanket to keep the heat in :)

When he is doing so well, I feel positive, but no amount of strength or time can unstick his gut. We just have to hope and pray this baby gets strong enough for another surgery and he has enough live gut to form a stoma. This baby has to come home..

MUMMY

Exhausted, on auto pilot. Swinging between feeling positive and telling Jett he has to come home, to silently planning his funeral. It's awful. I hate this, I hate that this is my reality. I hate that so many people take their babes for granted. Jett is so amazing, but there are no guarantees. I need to focus on the moment, but it's hard.. Especially with the twins birthday so close. I can't believe they died in this very hospital. Jett HAS to make it. I don't know how I'll be able to function in daily life without him. Jett is my last chance at being a Mama to a living baby. This is not how my story ends. it just can't be.

ETA: I just came back from the hospital and my babies blood gas allowed his ventilation to be weaned AGAIN :) Pip is now 18 :).. HB is 93 so may not a transfusion just yet :). My heart almosts bursts with love everytime I see him :) I'm so proud of him, and his brothers.. I am thinking they are helping him :)

Surgery day 42 & day 43 update ( 6 weeks old today!)

Yesterday Jett had surgery. It took 2 and half hours. When Jade and I went in to finally speak with the Drs we didn't like what we heard.

They opened him up and no bowel spilled out. They dug around inside and found that the bowel was all stuck together. Somewhere along the line, Jett had perforations. They were never seen on the numerous x rays. The contents of his gut had spilled out into the abdominal cavity and over time has formed adhesions. His bowel is all stuck together in a big knot. The surgeons couldn't even tell which end was which. It was also stuck to the abdominal wall and his liver. There is an abscess in the abdominal cavity.

Jett is lucky that he didn't get an infection in his bloodstream.

The surgeons couldn't form a stoma, because they couldn't find any part of the bowel that wasn't stuck. Pulling it apart and trying to untangle the mess would have cause him to bleed out and they would have lost him then and there. They almost lost him just from opening him up and handling him, he required transfusions, he lost quite a lot of blood.

The surgeons ended up putting in 2 drains. 1 in the abscess to drain out the pus & the 2nd one in his small intestine to prevent further spillage in his abdominal cavity. The have also continued with 4 different types of antibiotics to prevent the infection from the abscess spreading into his bloodstream.

My little baby has to get strong enough for the surgeons to open him up again and untangle and unstick everything. They think by the time he is strong enough his bowel would have died and there will be nothing they can do. When I asked yesterday if Jett will survive, Dr D said he had a slim chance.

Today Mum was up and I had another meeting with Dr D. She re capped what she told me yesterday and I think I understand it. I asked her when they think he could be strong enough for the surgery. She said it could take months. So what that means is Jett could remain on TPN (Total Parenteral Nutrition) for months, stabilise, be strong enough for surgery then they could open him up and not be able to save any of his bowel. Without a bowel he can't eat.. He can't live on TPN. I asked her today for a number.. She said he has a 5 - 10% chance of survival..

On top of all this there are other things to consider. Keeping him on ventilation can make his Chronic Lung disease worse. The infection in his abdominal cavity could spread to his blood stream and he could die from that.. It is very touch and go.

Then last night we had post surgery complications. His BP was dangerously low and I was warned he may not survive the night... He did though and today his BP has remained stable. :)

My mind is going a million miles. Jett has to make it, I have to have faith.. But the reality is he may not..

My goals have now changed. I wanted to have him in special care at xmas, now I just hope he's still alive.

I asked Dr D if we were putting him through all this for nothing. She said there is hope, there is still a chance. She said she will let me know if she thinks he is too sick to keep pushing him.

The hardest thing about all this is the waiting. We wont know if his bowel can be saved until he is strong enough to have the surgery (or a contrast). This will take weeks or even months. We wont know if his lungs will be able to handle being ventilated for so long.. If his lungs get so bad he needs high frequency vent and nitric oxide (like he did at first) Dr D will probably suggest it could be time to let go.

Trying to focus on NOW though. He's still alive, he doesn't have a bloodstream infection and his ventilation isn't too high considering his huge operation. Ventilation is: Rate 70, Pip 25, Peep 8, oxygen 42%.

More good news today he had a head scan which was clear and an echo which showed his heart was working well and the duct hasn't changed, so at least that's something..

I'll try and fill in the finer details later, for now I don't have the energy. I have tried to explain this as best I can. It is confusing and difficult to process.

Day 41 - Update

JETT

Jett has still had a few desats involving him going grey, it's very scary, but he hasn't had anymore bradys.

The surgeons came to talk to me and the plan is they will most likely operate tomorrow. They will make a small cut in his right side and create a stoma. Then when he gets a bit stronger they will then go ahead with the contrast and do another surgery to remove the dead or narrowed part of the bowel, then he'll have another surgery to reverse the stoma.. So 3 surgeries, but they just feel that he wouldn't be strong enough to tolerate the full surgery tomorrow.

I have been advised that surgery is risky, but leaving it could be riskier. We are worried that if he doesn't have surgery, he could end up with a perforation and that would result in emergency surgery. At least this way, it's planned, through the day with lots of back up and Jett's Dr will be there. I think that they have left it as long as they can, and by doing this stoma once he recovers Jett will be able to get back on Mama's milk and get stronger for the next surgery. I have been assured I have a great team, 2 of the best surgeons will be doing the operation. (So they tell me) Bub wont be transported to the childrens hospital, they are just going to a procedure room on the same floor to minimise travelling.

I have to consent to the surgery of course, but I honestly feel that between his Dr's and the surgeons they have weighed up the risks over time and decided accordingly. I don't feel it has been a rash decision on anyones part and everyone wants the best possible outcome for my baby. There are no guarantees though. I am really scared.

MUMMY

I have had an awful day today, so much to process. I have no clue how I am going to sleep tonight, but I know I need to, because I need to be strong for my baby tomorrow.

Anyone reading, please pray to whoever/whatever you believe in.

I have faith my little Jett Plane will pull through, he's so brave and strong. He has so many people who love him and lots of special guardian angels watching over him.

I am still so scared and I can't believe this is happening to my boy :(

Day 41

JETT

Well yesterday was a good day until I changed his nappy last night. He had a nappy change earlier that had a tiny streak of blood in it and we were hoping it was just trauma around his anus from the enema, but then his next nappy change proved different. It was full of poo and clotty blood :(. The Dr's immediately did a blood count and an x ray, both of which came back the same as the previous ones, so that was a good sign. Nothing was done overnight as his ventilation was stable. This morning at 4am his nappy had more blood in it, so I was at the hospital early this morning, to sit with my baby.

When they did his blood gas at 6am Jett had a major bradycardia and his oxygen saturations dropped down to 20%. He was grey, it was awful. Luckily though he didn't need to be bagged, they just increased his ventilation rate and he recovered quite quickly. Later on when they managed to get a blood gas, it came back that his carbon dioxide was 88 so they increased his vent rate permanently from 40 to 45.

He then had another massive desat, with his oxygen levels dropping to the 30's so his rate was again increased to 50..

When his Dr (Dr D) came to see him she wanted to start him back on antibiotics in case he has an infection in his gut (possibly NEC, which has been mentioned in earlier posts) so to start him on AB's she first needed to put in a cannula. :( One hour she was in there with him and when she finally got a vein it was in his head :(.

I cried when I saw it, my beautiful baby's head, was one part of him untouched and now it had a drip in it :(... It is so unfair, I hate seeing my baby boy like this :(

Dr D is thinking that the surgeons will just have to operate without a contrast. She was going to talk to them today and I am hoping to see them this afternoon. Dr D seems to think surgery is likely in the next couple of days. So scared for my baby boy.

MUMMY

Sad and scared. Angry that my baby has to go through this.. Fucking sux. My baby is laying in an isolette with a fucking drip in his head and possibly about to have surgery. It really isn't fair. He is so brave. I love my baby so much.

Day 40

JETT

Well the morning didn't start so well, when I rang at 5.30 I was told he needed a cannula re site, however, when I got there Dr D said he is fine to have his meds orally so no need for another cannula!! He is only having caffeine and lasix through it anyway. Things would only change if he needed a transfusion or if he needed AB's again.

Jett has had a good day, oxygen down to 30% and we had a cuddle this morning :) 2hr skin to skin :). His oxygen wasn't too bad, he had a major desat when he was first put on me and his oxygen was put up to 40% but it was able to be brought back down to 34% :) He is still swinging a bit, but they try not to chase him with oxygen, they like him to come up on his own and today he has been recovering from desats quite quickly.

He had a microlax enema and did big poo's. I'm not used to changing pooey nappies lol.. He has been cheeky today, peeing on his sheets twice today while I was doing his nappy.. Creating washing for his Mama.. I love it though, it makes me feel like a normal Mum in a way lol..

He had an abdo U/S today and his tummy looked good. So at this stage, no contrast, no surgery. I think it will be left as long as possible. His platelets are still dropping they are only 59 now. Jett had a urine test to rule out CMV. (Cytomegalovirus). If he has it, it's not dangerous, it's really common, but they want to rule it out as apparently it can cause platelets to drop. They won't even treat it, if he does have it.

Next week he will be 32wks gestation, so he will be having an eye test for ROP (retinopathy of prematurity)... I don't want him to have it cos it will hurt him :(.. Mama will be there holding his hand and they normally give sucrose for pain relief, or EBM.. Jett will be having EBM on his dummy. When I left to come and have dinner he was so comfy on his tummy :) I'll be heading back soon :)

MUMMY

TMI post about boobs :)

So my nipples aren't getting better despite being on the hydrocortisone cream for 3 nights now.. So between myself and the lactation consultant, we decided it was thrush. I went to ORC for a script for diflucan, but it contraindicates with my heart condition so they said no, just stop taking the antibiotics and resume anti fungal cream. I have turned down the power of the breast pump and they seem a bit better so hopefully my body will recover soon. I am excited to be off all meds and finally have clean milk for my bub. (Not that he's feeding at the moment, but he will!) Apart from my nipple issues, I feel good today, I love snuggles with my babe :)

Day 37, 38 & 39

JETT

Today Jett has been good, his ventilation rate has been weaned from 45 to 40 and his oxygen has been weaned down to 30%. It has been anywhere from 30 - 40% the last few days. He has had a few issues with cannula's tissuing so has had to have a couple of resites.. Not very nice. He now has a cannula in his ankle :( He hates it..

He had a weigh the other night and weighs 1560gms. He still has a bit of fluid though, so they are going off his previous weight.. He had an albumin transfusion yesterday, his level was at 19 and Dr D wants him tranfused if he goes under 20..

As far as his gut is concerned, not much change, Dr D is still concerned about some bowel inflammation so still doesn't want to do the contrast, he is being assessed on a daily basis, but Dr D will be back on tomorrow so we will see what happens.. Soon they may have to just do it, I'm not sure how long they can leave it. He can't even get off the ventilation til after the surgery, so in a way, I just wish it would happen so we can start moving forward again. Having said that I don't want to rush him. I trust that Dr D is definitely doing what's best for Jett :) The surgeons come on a daily basis aswell. Day 37, they put a cotton bud up his bum to try and stimulate him to poo. It was awful, Jett was crying so much and his little face went purple. It distressed me too. I hate seeing my babe that upset. It didn't work anyway, still no poo.

I haven't had a cuddle for 3 days, yesterday i felt he was too unstable and today I wasn't allowed because they changed his ventilation rate and wasn't sure how he'd cope with it, so it was best to let him rest. It's really hard though. I just wish I could be a normal Mum.. I'm hoping I get a cuddle tomorrow, since he has been pretty good today :)

MUMMY

I can't believe I have been living this life for 5wks. I have been living at Ronald Mac house, spending my days in the hospital and expressing 8 times a day for 5 weeks!!! I am hoping only another 10wks to go then we can come home..

As Jett gets bigger and stronger, it's actually becoming harder for me. I watch how much he fights and know how angry and uncomfortable he must be. It's great he's getting stronger, it's great he fights but my god it's hard to watch him fight his tube and knock hands away when the nurses or dr are doing something.. He had his tube and NG tube changed today, he hates it and they have to hold his arms and legs down because of how much he fights. It's awful to watch, but I always make sure I'm there, even if it's just talking to him. Today though a nurse let me touch him and hold his hand while they were doing it. Most nurses don't. It's funny how just holding my son's hand can calm us both. He actually handles it quite well. He was only put up to 40% oxygen. Although they did increase his rate back up to 45 just for that, because it is so traumatic. His little face gets red from them pulling the tape off. Makes me so sad to see him like this. I just want to protect him and I can't :( I can't wait til I have him home. I am so proud of my lil Jett Plane he is so brave :)

Day 36 - Cuddles are oh so nice!!!

JETT

Jett is doing well today, not as many desats today.. He had his tube re taped but Mummy was there with him, he coped quite well with it..

He has been so alert today, opening his eyes wide and having a real good look around. My baby is growing up! He has lost heaps of fluid so is looking really really good :)

Dr D came and spoke to me today and explained that at this stage she is still not happy to do the contrast study as his bowel is still showing signs of inflammation so she thinks the contrast could do more harm.. She discussed with the surgeons the possibility of just operating without the contrast but they weren't happy to do that because they don't want to miss anything that the contrast could pick up, so it's a balancing act at this point.. Dr D said next week, it will most likely be done whether he is better or not, so hopefully the inflammation goes.

This afternoon we had cuddles.. 4hrs of skin to skin bliss. We love cuddles :)

Now I'm just at home (well Ron's) feeling nice and relaxed after my cuddle. I'll go back in about an hour to express and read his bedtime story then BED :)

MUMMY

Oh dear, where to begin? So Mum left today, I really wish she didn't have to go, she helped me so much and it was so nice having her here. I know she'll be back though.. As if she can stay away from her lil Jettski!! Lol..

I had a psychologist appointment today, that was good, I spoke about Taite and Seth a bit. They would have been 3 this month. I am finding it harder the closer it gets. Especially with the amount of twins in NICU. I have no idea what I will do for their birthday yet, but I'll figure it out.

TMI paragraph about boobs.....

Physically I am still really run down, I have had chronic thrush on my nipples for about 2wks and it's just not getting better. I'm doing all the right things, so in the end the registrar from ORC (Obstetric Review Centre)spoke to a dermatologist for me. She recommended I stop the antifungal cream and I am prescribed hydrocortisol cream and they took a swab. They think maybe I have some sort of allergy or contact dermatitis. They also took a swab to rule out infection although that is unlikely because I am on loads of antibiotics due to this retained product.. Anyway hopefully this will all be resolved soon because it makes expressing even more painful than it already is...

Day 35

JETT

Quick one today, Jett has been stable. Contrast will most likely be on Friday, surgery if needed will be next week.. The uncertainty is driving me nuts, but he is ok at the moment and they want him to be the best they can if he does have to have surgery..

He had a wash and weigh today, he loved being washed, normally he hates it, but he was so chilled it was cute! His new weight is 1495gms. It is good that he has lost about 50gms in fluid :)

He is now on daily lasix and had a blood transfusion today as his HB was 80. 5 minutes into the transfusion his cannula tissued.. I was so upset that they had to resite it. It took them over half an hour to get a vein :( Then when they FINALLY got it in a new baby had arrived in the room so I had to leave because there was a sterile procedure. I just wanted to be with my baby and was devastated I missed doing his 6pm cares.. It is so awful, he has no pain relief, it must hurt him, especially when they try and try to get veins.. By the time I went in after the sterile procedure, he was fast asleep on his tummy looking quite comfy.. I stayed for about an hour and a half then came for dinner. Now I am about to have a sleep and go back for his midnight cares..

MUMMY

I am ok now, I was extremely distressed when he had his cannula resited though.. I couldn't make it through today without tears. I wonder when that day will come?

I am very spoilt, I have so many friends who have made me lovely meals and sent me gifts.. I appreciate it all so much!!!

Mum leaves tomorrow, not sure how I will cope without her, but I will somehow.. My brothers need her home, so I guess I have to share..

Day 34

JETT

We had cuddles today!!!! The contrast imaging will probably be Thursday, from speaking to the Dr (although Jett's Dr wasn't here today)nothing at this stage is certain, just waiting waiting.. He has had a fairly good day today, his morning blood gas was good so his rate was reduced to 45 and his pressure (PIP) was reduced from 20 to 18 which is great news. He looks good, and loved cuddles with Mummy :)

We had skin to skin for 4hrs and we had a lovely sleep together. His oxygen has been swinging a bit, but mainly good. I am hoping it not the duct in his heart starting to cause trouble.. His oxygen support is ranging from 27% and has only been taken up to 32% today during movement and cares..

I can't believe I have forgotten to mention MY BABY SMILES!!! He has been smiling from 3wks old :) I swear it's not wind or a funny facial! (Ok it may be but it looks soooo cute! Especially when I say "I love you Jett" and he does it!)

I think that's about it for today, not much else has changed, contrast imaging will probably be Thursday, not sure about anything else...

MUMMY

I feel good today, cuddles are so good.. After cuddles I went shopping and bought some tops and a skirt. I felt normal and because I had such lovely cuddles I managed to enjoy shopping and didn't feel anxious once.

We have a really really good crew in our room. We all chat and share our experiences. It was really special today to the parents of one bub have a proper big bath :) It will be a sad day for me when they graduate to the next room,(for my own selfish reasons of course!! I love having a laugh with the parents :) but it is so beautiful to see them doing so well, we are really happy for them.. On the other hand though, one of the Mum's had a rough time with her boy last night and today, it is so sad to see :( and it is s a stark reminder that things can change so quickly and at any time. It is a very emotional place to be..