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.