Day 124 & 125 - EXTUBATION!!!!!!!!!!!!!!!!!!!!

Look at that gorgeous face!!!

CPAP

Well today has been HUGE!! Jett had his ventilation removed at 10.30am :) He spent a little time with nothing on his face while they got the CPAP organised.. To see my beautiful son without anything on his face was the best!!

About CPAP

CPAP stands for Continuous Positive Airway Pressure. Jett is breathing on his own, but the CPAP keeps the air sacs in his lungs open so he doesn't have to work so hard to breath. At the moment the PEEP (pressure) is 8. They generally slowly wean down to 5 before coming off it.

About today :)

There were so many nurses visiting Jett today, around the time of his extubation he was surrounded by about 4 nurses.. One nurse commented there was a party at Jett's cot Lol.. He was cool about it all. Had no idea what all the fuss was about! I got a video of the extubation and then a couple more since.. I LOVE hearing my baby cry!!!!!!! (well, I don't want him to cry, but it's nice that I can hear him without that bloody tube!) It's so hoarse and soft. It sounds like a cat.. Very cute!

He had about half an hour off CPAP again with his cares this arvo. He tolerated it sooo well, he had sats of 100%!! It was a shame to put it back on him, I hope he's not on it for long. One of the nurses picked him up and passed him to me! I had a cuddle of my son, unplanned!!! I was standing, rocking him like a normal Mum!!!!!!!!!!!!!!!!!!!!!!!! He was looking up at me cooing. We were talking to each other it was so cute! He is so clever!! We had a lovely conversation!

After I put him down I changed his nappy and there was a little poo!!! He had done one this morning about the same size. It's so exciting.. The surgeons gave the ok to start feeds this morning, they can hear bowel sounds with the stethoscope and his aspirates are fairly clear. One thing at a time though, breathing came first! Feeds will probably start in the next couple of days..

I asked Dr D what we needed to get home.. We need Jett to be off breathing support and for him to be tolerating full feeds. Full feeds means 60mls 3hrly.. Dr D is happy to let us go home with an NG tube, so suck feeds will come slowly, but they don't have to be fully established before we go home.. Yay!

Jett had a wash and weigh last night he weighs 4430gms, so he'd lost some weight but it was fluid anyway, so all is good. We had a cuddle last night too. I can't wait til I don't have to schedule cuddles anymore :)

Jett has not struggled at all to breathe which is amazing. He has been ventilated for such a long time! He has come off the vent all by himself, with no steroids!! He could have done this weeks (months) ago, if not for his gut issues.. I will be interested to see how he goes overnight. He was awake literally all day today.. We were joking that he is scared to sleep in case he wakes with the tube back in! When he sleeps though, he may forget to breath and have apnoeas and bradys. It's normal though.. As long as it's not too many! The lowest his oxygen sats went today were 90% even when he was off it. It's awesome

This is a day I have been waiting for. Today, makes it all worth it. My son is such a star. I'm so proud of him. I am so so happy. Bringing my son home is becoming a reality!!!!! :)

Day 123 - 6 days post op - 4 months old today!!!

Jett had another good blood gas today. His rate has been weaned to 20. The registrars and nurses are talking about when he'll be extubated.. I absolutely cannot wait to see his gorgeous face without that tube in! Hopefully this week, it is up to Dr D though :)

I want a cuddle, hoping I can have one tomorrow. Jett doesn't appear to be in any pain at all, he lifts his legs when I change his nappy and he isn't agitated or unsettled at all. His sedation has been weaned by 4 again today so he is only on 4mcgs of his M&M's.. His aspirates are still large but they are quite clear.. Again though, it's Dr D's call when he starts feeding.

Today I bought some playschool and wiggles CD's to play him. His Mem bought some wrist rattles and another toy to hang on his cot. He was reaching out and grasping it! He is so clever :) He was awake for ages this afternoon, I love having my alert boy back :)

Jett is still on antibiotics til tomorrow. He will be having his lasix IV as long as the IV lasts.. Secretly I want it to go so he has another hand to hold lol :) He always has his hand on his head and can't do it with the IV,cos the board is in the way.. I think he misses it :)

So another good day for Jett today, Yay!!

Definitely, My hero, just like his outfit says

He loves his new toys!!

Day 122 - 5 days post op - 3wks adjusted

*Just to start I need to make a correction. I said Jett had a blockage in his duodenum, that was incorrect, it was his jejunum, so they cut that part out and joined it up. *

Another great day for my lil Jett star! He is down to having daily blood gases. Today his CO2 was 60 and his PH was 4.3. It is the PH they are paying attention to now, more than the CO2. His PH should be between 3.5 and 4.5 so his was good. His ventilation has been weaned further today now his rate is 25 and his pip is 18.. The lowest it has ever been!!!!!!!! His oxygen is at about 25% and he has oxygen sats of 98% :) Jett's sedation was also weaned again by 4mcgs, so it's now at 8.

Jett's arterial line started leaking tonight and when the nurse went to re tape it, Jett pulled his hand away, pulling it out. It doesn't matter though, he doesn't really need it. I'm glad because it is one line less and he now has a free hand.

Jett's antibiotics will finish on Monday, unless his IV tissues before that. If his IV goes Dr D was happy to cease the AB's so he wont have to have the cannula resited. Yay!

My lil fatty had a sponge wash and weigh today. He tolerated it really well. He doesn't seem to be in any pain. He lifts his legs while I change his nappy and seems fine :) His weight today was 4510gms! He is a bit swollen though, so it's not entirely accurate. Still, he's a big boy!

His aspirates from the NG tube have increased. If they go more than 15mls at a time, he has fluid replacement so his electrolytes etc stay balanced. I was a bit worried about increased aspirates, but apparently it's ok, it means the gut is producing more gastric juices. They are not worried about it at the moment. The aspirates are still a bit green, but it looks clearer to me. I am keen for Jett to start on milk, but at the same time don't want to rush him.. We have waited this long, whats another week or so! I would hate for him to start feeding and have it put stress on the joins in his intestine, slow and steady wins the race...

I have been on motilium since Tuesday to build up my supply, it seems to be working. It has increased by about 10 - 20mls per pump, so not a great deal, but it's something. I know with all my frozen milk, at least I'll have enough for him until he can feed from me himself. Then he'll just have to work hard to build up my supply. :) I think he'll be quite happy to do that :)

My little star - 4 days post op :)

No idea how the star ended up in his ear! Lol

Today, 5 days post op.. "I love my Mama this much!! ( 2 days ago I bought him the book 'Guess how much I love you... He loves it and quite clearly understands it!!)

Day 121 - 4days post op

Jett has had a good day. His M&M's were weaned again today so he is on 12mcgs now. He has still been sleeping most of the time. In his wakeful periods he still looks a bit out of it..

Jett's rate was reduced to 30, the lowest it's been in a long long time. His pip was reduced to 20 which is what it was before surgery.. His oxygen is around 25%. He is doing so well. last night though, he had some issues maintaining his temperature so he had to have an overhead heater. he was ok today. He was wrapped up all snuggy with a hat on :) His bonnets and beanies are all to small for him now, Mum bought him a gorgeous beanie, but I had to wash it before he wears it. Hopefully it wont take long to dry :)

Dr D and the surgeons are really happy with him. Hopefully feeds will be started on Monday :) I started motilium on Tuesday, it has increased my supply a bit. Jett will have to work hard to build my supply when he finally starts feeding, but that's ok. It'll happen! I can't WAIT!!! Hopefully I can have cuddles in a week or so. I miss his snuggles..

Day 120 - 17wks old today, 3 days post op!

Wow!!!! So 3 days post op and my little man is doing so well!!! Jett's oxygen had gone down to 25% overnight! It has gone up a tiny bit today but only to 30%. He seems to like lying with his head to his right, so when he faces the left he's not as happy lol..

His ventilation wasn't weaned further as yet because the blood gas machine has been playing up so he hasn't had his done yet. His sedation has been weaned by 4mcgs, so he has woken up a bit, but still very drowsy! He was lifting his legs up when I was doing his nappy. Ouch!!

Jett's aspirates from the NG tube are getting clearer!!!!!!!!!!!!!! We are waiting for Dr D's clearance to start mama's milk.. I'm trying not to get too excited though.. They may still wanna wait til he poos or farts which he hasn't yet. The bit of inflammation around his tummy has settled right down so they shouldn't need to put him on fluclox.. Awesome! The surgeons, Drs and nurses are all really happy with no concerns :)

My baby is getting dressed and moved to his big cot this arvo when I go back to do his cares. yay!!!

In the early days of our journey I remember saying to Mum "I wonder if there's a time when I'll make it through they day without crying" It happened eventually, but now I'm back to crying everyday. Only this time it's with happiness, joy and so much pride. No matter what happens in my life now, absolutely no one can take my happiness away. I have my son and that's all that matters!!!!!

Day 119 - 2 days post op..

Aaah, my lil Jett! He's doing so so well. Both his blood gases today have been good. His Pip was weaned this morning to 22 and then this afternoon his rate was weaned to 35 from 40.. :)

Dr D stopped his flagyl today so now he's just on the ampicillin and gentamicin. There is a little bit of red inflammation around Jett's wound so they are keeping an eye on it. They may start another antibiotic called fluclox. Jett will be slowly weaned off sedation tomorrow, 4mcgs a day.. I hope he handles it.. If he's too uncomfortable they'll just put them back up!

Jett is still pretty wacked out, he opens his eyes but just can't keep them open. It's so cute. He has a bit of swelling but not too bad considering. He looks really good. It is amazing how these little babies can recover so fast!

Apparently there is talk of him having his 2 month immunisations.. I haven't discussed this with Dr D yet.. I'm not fussed on him having them yet. I'll catch her tomorrow morning hopefully.

He's just gorgeous! One of the nurses bought him a packet of stars and said they are to mark his cuteness rating lol. We always joke he scores 20/10 and how it should be recorded on his obs chart lol.. He has a star now stuck to the tape on his cheek.. My lil Jett is a star, he has had lots of nurses visit him since his Op. Everyone is soooo proud of my precious boy!!! Mummy is very proud and so excited.. I bought his car seat today :) I'm so so happy!!! I get to take my boy home!!! :)

Day 116, 117 & 118 - Surgery!!!

Wow, so Jett has had his surgery!! Finally..

I have written this post in 2 parts.. Pre op and post op..

Part 1 - Written 1430 on Monday January 23rd 2012 while Jett was in theatre, while waiting in the parents lounge of the Peadiatric Intensive Care Unit at Royal Children's Hospital :)

Yesterday, the day before surgery was a hard day. It was in the back of my mind that spending time with Jett is very precious. It's a big surgery coming up..

Last night I got a lovely cuddle. From 9.30pm - 2am. I then put him back to bed and changed his nappy expecting him to sleep and for me to go and have a few hours before his big day.. That didn't happen. Jett was wide awake! I couldn't leave him wide awake. I didn't want to leave him wide awake.. I stayed with him til he fell asleep at 5am. I went back to Ron's for a quick shower and packed my surgery survival kit. When Mum woke up it was still early, so I had a half hour power nap from 6.30 til 7am. We arrived at the hospital at 7.30am.. There wasn't a time for surgery but it was booked for 11am.. The time went surprisingly fast. Jett had to have his tube re taped, and his bag had leaked but instead of changing it all I just re enforced it with comfeel. It wasn't enough though, it leaked again!!! All over his clean blankets lol! Re enforced again but this time with a bigger piece of comfeel. Jett was then changed into a theatre gown, I applied some calm and clear essence to his pulse points and the waiting began.

Cuddles with mama night before theatre

Jett in his theatre gown

While we waited I held his hand, cuddled him as best I could and sang him songs. I told him how there are so so many people thinking of him and praying for him. Nurses wrote good luck messages in his little diary I keep by his bed.

Then word came that the surgeons were held up.. It would be after midday now.. Mum went down to grab me some subway for lunch and I ducked out quickly to eat it in the parents lounge. I didn't want to spend precious time away from my son. I needed him to feel my presence and gain strength from that.

Then the time came. The surgeon Dr McB came and spoke to me with the anesthetist. He explained that while him and other Surgeon Dr R were operating the anesthetist would be looking after Jett's ventilation ect.. Dr McB told me that the aim was to untangle Jett's bowel, cut out affected areas and join up the good bits. He said more than likely there will be multiple joins so they would form a stoma above the joins to give them time to heal before making them work.. He said they would do as much as they could.. As much as Jett will let them do. If he becomes compromised they'll stop. It could take more surgeries to do what they need to do. Once they start today, they will have to keep operating until they do what needs to be done. Even if it means multiple surgeries.. The risk he mentioned was operating near the liver. Once the liver starts to bleed it can be hard to stop.. They have blood on standbye for him..

Not long after that Jett was loaded into the neo cot and off we went to the children's hospital. It's about a 10 minute walk through the Royal Women's to get to the children's hospital. Jett's ID was checked and consent form was double checked. Then it was time to say goodbye. I kissed Jett's hand multiple times and told him I loved him and needed him to be strong. I asked him to let the surgeons do what they needed and I'll be here when they have finished. I silently asked my big boys Taite and Seth to look after their brother. He was taken to theatre and I cried..

Loaded in the neo cot just before leaving to go to the children's hospital

As I write this I am sitting in the parents lounge of the Peadiatric Intensive Care Unit. This is where the surgeons will most likely come to once they've finished. When it's over Jett will be loaded back into the neo cot and back to his normal room in ICN..

Part 2 - Written today, Tuesday the 24th Jan 2012. One day post op..

The day of surgery was a long one.. After writing that post yesterday, I killed more time playing on the internet.. I spent time on facebook, dodging people's questions about when surgery was.. Hardly anyone knew the date.. I didn't want to do lots of updates, I didn't want people to be asking me if he was out of surgery yet..

Finally at 1750 my phone rang. It was surgeon R. She explained the long way around what they did in theatre. I wasn't listening, I wanted to get to the point.. Is my child going to survive? Finally she wrapped up the conversation with "So he has 2 joins in his bowel and no stoma" I cried! No stoma, thats fantastic!!! She told me I could meet him in his room in the ICN in about half an hour.. I explained I was right there at the PICU parents lounge. "Oh well, come to where you left him then and wait" So Yay! I hugged Mum and cried, my baby was ok!!! I waited about half an hour outside the theatre then finally he was wheeled out in the neo cot. He looked beautiful! So big. He didn't look sick! I cried with happiness and said hello to my precious baby. I silently thanked everyone for keeping us in their thoughts and prayers. I thanked Taite and Seth for watching over their brother. I thanked Jett for being so strong and never giving up :)

We got to his room in ICN and I was hugged by many nurses! Yay, Jett made it through. The operation was successful! No one could believe he didn't have a stoma. No one could believe they only made 2 joins in his bowel.. This was GREAT news! I was so excited, I couldn't stop crying.. I was exhausted so once I knew he was stable I left to have a sleep. It took me some time to wind down, but once I fell asleep I slept soundly..

Surgical details:

Jett had about 3cms cut out of his duodenum then a small wedge cut out of where the drain was. So all in all he lost hardly any bowel! His large colon looked good and there is a track from stomach to bum :)

The surgeons managed to divide all the adhesions. Not quite sure if they had to cut through near his liver, I forgot to ask..

Jett did need blood transfusions, but was no where near as critcal as his first surgery. He received 90ml/hr/kilo

Jett received ketamine before coming back to ICN so he was pretty zonked!

The incision is all the way across his stomach.. I haven't measured it though.. It has minimal ooze.

Possible concerns:

Due to Jett receiving blood plus his normal TPN they were concerned about the amount of fluid. It's also a concern when he is so sedated that he wont wee. He did though, no catheter was needed. He still has good urine output today.

It's possible his bowel will be lazy IF he doesn't have any bowel action in about 2wks they may have to do a stoma because they want to start feeding him ASAP.. It's unlikely though, he will need that. There are so many people waiting for this boy to poo! I wonder if he will kill me when he's older for putting this on the internet???? LOl

Infection of the wound is possible. Jett has been put on Ampicillin, gentamicin and flagyl..

Where to from here?

So the aim now is to keep Jett comfortable. He was started on Morph and Medaz last night, 20mcg/kg/hr. This stops him from being in pain and from becoming active and splitting the scar. He did start to wake up a bit today though :)

We want him to fart, possibly poo, and have clear aspirates from his NG tube. At the moment aspirates are green which is normal.. Once that happens feeds will be introduced slowly.. 1ml of Mama's milk 3hrly to start..

Once he has recovered and feeding next step will be getting him off the ventilator and onto CPAP (Continuous Positive Airway Pressure).. He will most likely need steroids because he has been ventilated for so long..

How he's recovering today

Seeing Dr D today was so nice.. She came into the room doing a happy dance and wearing a big smile :) When I saw the surgeon I wanted to kiss her! I thanked her sincerely for the fantastic work she and the rest of the team did.

My amazing boy is doing so well. His ventilation is at a rate of 40, Peep is 8 Pip is at 24, oxygen at 42%. His urine output is great and he is having 6 hrly blood gases. His last gas was good, his CO2 was only 59 so his pip was weaned to 23, but his oxygen saturations were sitting on 94, they should be 95 or above, so they increased the pip back to 24.. Aspirates are green which is normal.. He is needing frequent suctions still. Unfortunately because he is so sedated he is unable to communicate when he needs a suction, so it's not until his saturations drop that they know he needs it. Twice he has had a big mucous plug which has made him splint his chest resulting in a big brady and he had to be bagged. I know that will change though once he's less sedated.

Medications: He is on antibiotics - Gentamicin, ampicillin and flagyl. He's still on lasix, TPN and his sedation..

He had 2 IV's, 1 arterial line and his central line.. 1 of the IV's was removed today yay!

All about Mama :)

I am so so happy! I was relatively calm while waiting for the surgery. All up he was in theatre for 5hrs. I left him at 1.30pm and saw him at 6.30pm. I'm so glad I had my Mum there waiting with me. She was and has been a fantastic support right from the beginning. I love her so much.. The emotions I experienced leading up to and during the surgery were indescribable. The fear, but knowing that we would have an answer and that there would be some sort of plan to go home... I was so terrified I may not be taking him home..To think 11wks ago I was told he may not survive the night. To be told he has only has a 5-10% chance of making it.. Wow!!! My boy is so strong. I love him so much.. There's nothing quite like the feeling of not having the fear your son is going to die. It's so nice that I can buy stuff and not think in the back of my head it may never be used.. In fact, to mark the occasion, tomorrow I am buying a car seat and having it installed. It will be ready for our trip home when he's ready. I am so looking forward to our life together! There's still a long way to go but.... I"M TAKING MY SON HOME!!!!!!!!!!!!

*Massive smile and happy dance!!!*

Just returned from theatre

Jett's incision

Jett waking up but still wacked out today

He definitely scores 100 stars on the cuteness rating :)...

Day 114 & 115 - 2 weeks old adjusted

Not much to report, Jett has been very settled. Ventilation still the same. Cuddle day was yesterday and I was upset my cuddle was cut short and he was put back to bed after only an hour. His TPN was going to run out which is normally not a problem, but it was line night so they didn't want to fill it, they wanted to change the whole line which is a sterile procedure. I think the nurse wanted to re tape his tube before she did his line, so that took extra time.. His tube gets loose so quickly, he only had it re taped that morning, he is just so strong whipping his head from side to side. He also slobbers a lot which doesn't help. He has grazes on the left side where the tape ripped the skin. Bactroban is being applied with his cares. It's such a shame he has to have it re taped so frequently.. Better than self extubating though..

The nurse last night said because he wasn't out long I may get a cuddle today, but when I asked this morning I was given the choice of today or tomorrow. I chose tomorrow as he is having bloods etc done in the morning so I think it will be nice for him to have a cuddle after all that. I am planning a long cuddle in the evening, there is nothing to stop us and it's not line night. Just have to pray that if the room gets an admission its through the day..

Today was wash and weigh day. He also had his vitamin K injection today.. The nurse was going to give him a big bath but was advised against it. They didn't want to risk his central line getting wet so he had sponge bath. It'll be a long time before he has a big bath again. Jett was weighed I can't remember exactly what his weight was 3984gms maybe?.. I forgot to write it down. I'll check when I go back tonight..

As today closes in we are another day closer to surgery. I'm a wreck.. For 10wks I have been waiting for this.. Now it's here I'm terrified. My milk supply is suffering big time, I am producing not much more than 200mls a day.. I am sick of pumping.. I still pump 9 times in a 24hr period. I just hope that once Jett has recovered from surgery and we are looking towards a future at home my milk will come back. I can't have gone through all this pain and agony of pumping for nothing.. I have to have a bit of faith, it's just hard when my body is failing me. (Again).

I'm sick of the uncertainty I face every day. Who is looking after Jett today? Has she looked after him before? Does she know he needs suctioning frequently, does she know how involved I am? Will she just let me do my thing or will she hover over me? Will she have him for 8 or 12hrs? Will he be allowed a big bath? Will he be allowed a cuddle? When will she be happy for these things to happen? It all depends on the nurse. I'm tired. I'm over it. I want Jett home.

ETA: After I wrote this post I went back to see Jett and find out who has Jett overnight. I was happy to see the nurse who had him. She is a beautiful compassionate nurse and I feel confident that if I'm not there overnight and Jett is upset she would take the time to sit and comfort him.. Anyway, I got there and said hello to my baby and she came up to me and whispered "Do you want a cuddle?" Of course I did but first clarified that if I cuddle tonight I still get my cuddle tomorrow night and she said yes of course... So I expressed and we got my precious boy out. I had him skin to skin for 2 and a half hours. After that I had to leave so another family could spend precious time with their very sick baby.. She wont be Earthside much longer :(

That nurse really made my night.. She is an amazing woman who has had her own challenges and has just found out she is pregnant. I am so happy for her, she will make an awesome Mummy..

During the lead up to this surgery, my mind is going 100 miles an hour. Normally I am asleep within 15mins of getting Jett but tonight my mind wouldn't stop. I felt his soft skin and smelt his baby smell. I told him how thankful I am he is here with me. I told him he can't give up, he has to be strong.. I told him all about the life we were going to have outside hospital.. He was wide awake listening to every word.. Then I read him a story and sang to him. He fell asleep soon after.. I love it when he is asleep on my chest. That is where he belongs..

Now I am desperately trying to wind down..I can't stop thinking about the week ahead..

Day 111, 112 &113 - 16 weeks old today!

The last few days have been fairly uneventful, which is good :) Jett had another big bath on Tuesday which he loved. He was tipping his head back so I let him put the back of his head in the water and it gave him a bit of a fright. I don't think he liked his ears getting wet!

It was a really busy day yesterday in Jett's room so he had lovely cuddles later in the evening. He was so settled all day yesterday. I figure he's sleeping to conserve his energy for his big day next week.

Jett had a sponge bath today because it was busy again and it takes 3 nurses to give him a big bath, between holding him, the tube and bed making. Hopefully he'll have another big bath on Saturday.. He got weighed today and weighed 3896gms.. He had lost weight his previous 2 weighs so it's good he's putting it back on again :)

Jett had his blood gas this morning, his CO2 was only 51 so his ventilation has been weaned. The pip had been weaned his last gas from 20 to 19 so today it was weaned to 18 :) His rate was weaned from 40 to 35. His oxygen is still room air (21%) and his saturations sit at 100 most of the time. Jett is low in some trace elements so they are adding something to his TPN.. Something starting with S.. I can't remember the name of it! Also not sure if I mentioned it, but Jett's IV came out on Sunday so his antibiotics were stopped. I had to catch another midstream urine sample which I did successfully to check if he still has e coli. No results as yet..

I am really happy he is so stable. He is definitely as well as he can be in preparation for surgery. He has been awake and alert and loving his time sitting up :)

Here are some pics :) I love my beautiful boy sooooo much!!!

Sitting up like the big boys do!

Snuggy buggy after his big bath

Wearing his cranky pants (and trying to pull that tube out!)

Dressed like a true Aussie in his tracky pants and singlet! So cute :)

Day 109 & 110

Day 109

Jett and I had an awful night last night. Jett cried for 3hrs straight, from 11pm til 2am. It was really heartbreaking not being able to pick him up and comfort him. :( All I could do was rock his cot, sing to him and hold his hand or put my hands on his body. It didn't help that the nurse was a bit patronising, she kept telling me to go home and get some rest. Yeah, like I'm going to go sleep while my son is in distress.. There is no way while I am alive Jett will knowingly be left to cry all alone. She certainly didn't offer to sit with him, Which is fine, he was in such a state I wouldn't have left anyway, but with some nurses you just know that they will sit with your babe to comfort them if you're not there. I definitely didn't trust her to do that. So for 3hrs I tried to do my best to settle him. Nothing worked. I asked the nurse to reposition him and that worked for all of 2 seconds. I tried everything, rocking, singing, talking, I took my hands off him in case he didn't want to be touched and still nothing. The nurse suctioned him, checked his IV sites I made sure he wasn't laying on anything and I still couldn't find anything that would have made him uncomfortable. He just kept crying. I wanted to hold him so much. Eventually he took the dummy, (he didn't even want that for ages) and I held it there until he was fast asleep. A couple of times I thought he'd calmed down but it never lasted long. It was so distressing and really distressing not being able to do anything. One of the other nurses came down to the room and asked why I was there so late and when I said Jett wouldn't settle she asked his nurse if I could pick him up but the nurse said no because of what happened with his central line :(. I hate this, I hate that my son was so upset and I couldn't comfort him :(.. I hate that I felt pressured to get him to sleep so I could go. FUCK being in hospital with people watching me with my son. I just want to be at home with my baby with him in my arms. The way it should be!

Today was a much better day. Little Jett wore himself out last night and slept all morning lol. I did too. I just put my neck pillow on his cot and rest my head down. It's not the most comfortable, sitting in a chair with my head on his bed, but it works. His oxygen had come up to about 30% during the day, but when he settled it came back down to 21% again :)After quiet time he had his wash and weigh, he weighed 3858gms so he had lost a bit of weight. He was really settled tonight which was good, so I managed to get home and get some sleep.

Day 110 - Cuddles :)

Today was another good day for Jett. He was settled all day sitting on only 21% oxygen with sats of 100 :)

I had a chat with the surgeon today, Dr R. She is the one who did his op last time and will be doing it again. Jett wont be having the 3rd contrast, she is pretty happy there isn't a fistula between his bladder and bowel which is great news..

I signed the consent form for surgery which is booked for next week. We spoke about the risks and what she is hoping to do. It's really complicated. She said the contrast showed a blockage high up from the stomach. She said if she makes a stoma that high he wont have enough bowel to absorb nutrients, basically the food will go in his stomach and pour straight out. So what they want to do is kind of form 2 stomas. This is really hard to explain as I don't fully understand it myself, but I'll do my best to explain what I understand of it.. Basically he'll eat, it'll go into his stomach and come out of the stoma formed. Gastric juices and partly digested food will then go back into the bowel through another stoma and then the nutrients can be absorbed..(It's called re feeding) They will then wait til he's bigger and stronger and hopefully go back in and reverse the 2 stomas and connect his bowel.. Hopefully.. All this depends on if she can even get in to do that. Dr R said she is very concerned about what could happen while she is trying to untangle his bowel. She said the risks are: Bleeding out, damage to liver and holes in the bowel. She said they may not be able to do anything because getting through all the scarring and adhesions is going to be a huge job and it's risky. I am scared, but I know she had to give it to me straight. Jett may not come out of this. The worst case scenario is that he dies on the table. They will have blood ready to transfuse, but she said with little babies and such a big operation, the risk of bleeding out is very real. That is my worst fucking nightmare. He can't die on the table..

So as you can imagine I was a mess this morning. We have been waiting nearly 10wks for this surgery and now it's here I'm scared. I know it will go one way or the other. I need a fucking miracle. I need to bring this baby home.

Today wasn't all bad news though. Jett had an echo and the duct in his heart has closed.. All by itself! He didn't even have medication! I'm hoping that this is a sign of things to come.. :)

Jett and I had snuggles this afternoon. He's so big now I can't believe it. I just sit and stare at him, kiss him and I am savouring each second with him. I love him so much. He was so settled during our cuddle. Still only on 21% oxygen and sats of 100 :)..

As far as surgery goes, he is in the best health he can be for it. His ventilation is remaining very stable and there aren't really any other concerns.. The registrar is going to speak to Dr D about giving him vit K on Saturday rather than the Thursday it would be due. That would give his blood the best clotting result when he has his coagulation factors tested before his operation.

Jett had his head circumference done today, it is 37cm.. He has the most kissable head :) He is back in his cot now, not the open care system :) When I got in this morning he was crying, cried all through his nappy change then we sat him up. He was so happy. He has gorgeous inquisitive eyes that check everything out. I'm so blessed to have Jett. I had a nurse last night tell me that Jett has definitely become part of many peoples hearts. She was saying that he is very loved by many of the nurses there and they are all cheering him on :) Jett has touched the lives of so many, people that know him, or people that know about him. He just has to get through this operation. I have to believe in miracles :. He is such an amazing little boy, it is a privilege to be his Mama..

Day 106, 107 & 108 - One week adjusted!

Day 106 - Cuddle day

Yay, Jett and I finally had cuddles. We hadn't had a cuddle since Sunday :) It was so nice :).. Jett's oxygen has come down heaps and he was fluctuating between 23 and 30% which is great. Dr D thinks it could be the antibiotics helping.(I can't remember if I mentioned this but Jett was put on ampicillin and gentamicin for e coli.)

Jett also got weighed today. Normally weighs and cuddle are on alternate days but both hadn't been done for ages. He weighed in at 3870gms which is pretty good. He didn't lose weight which is great considering he was only on fluids from Saturday to wednesday! Jett's platelets were 201 and the rest of his blood results were pretty good.

No date for surgery as yet. Not even sure when the 3rd contrast will be

Day 107

I have hardly seen my baby today, there was a new admission so the room has been closed for most of the day. I have been there to do Jett's cares and give him a bath though.. The contrast stuff is coming out of all ends. He did a big spew last night and has mucousy stuff coming out of his bottom. I can't wait til after the surgery. When I saw the surgical reg last night I told her I wanted to have a meeting with the surgeons next week to discuss best and worst case, what they hope to achieve etc.. I think the main goal is to get Jett feeding, so hopefully they will go in and be able to form a stoma. They can get him feeding after that and worry about the rest later. I told Dr D that I am totally fine with going home with a stoma and an NG tube if necessary. I just want him home.. I'm scared of the upcoming surgery, but hoping that my strong brave little man will ok..

Day 108

This morning when I came in my baby was very unsettled so instead of having a cuddle in the arvo like I normally do I had one this morning to settle him. He loved his cuddle, I had him skin to skin and he was awake looking around. Then he did something that made my heart break... He attached to my chest and started sucking. Then when he realised no milk was coming out he kept moving his head and attaching to different parts of my chest :(.. He so wants to breast feed and I really want to feed him. I love that he has such a strong instinct to try and find the milk and latch on but it's so hard when he can't. I absolutely can't wait til this surgery is over and he can feed. The day we can breast feed will be the best. I had to end up giving him his dummy so he would stop looking for milk on my chest.

Our cuddle ended abruptly when I noticed blood all over my gown. Jett's central line had leaked. We put him to bed and the nurses took his dressing down. Luckily the line was still secure in his arm, but the catheter bit that leads to the IV pump had a hole in it. One of the consultants had to come and re thread it. So glad his central line was still ok. He only had it put in on Wednesday.

Even though we only had a short cuddle it was enough to settle Jett. We put him on his tummy and was fast asleep for 3hrs. His oxygen went down to 21% which is as low as it can go. 21% is the same as room air :)

Still no date for surgery, not even sure when the 3rd contrast study will be done. I do know that surgery will be fairly soon though. It's just a matter of getting the team together. I think they plan to have 2 surgeons like they did last time. I keep getting warned what a big operation it will be.. I know it will and I'm scared, but sometimes it's nice to be in a bit of denial and look past the surgery and see him recovered and feeding.. Hopefully that's what will happen. I have no idea what I will do the day of the surgery. I doubt I'll leave the hospital though. It'll be over at the kids. I hope they have good waiting rooms. Jett's first surgery was 3 hrs this one will probably be much longer. I just hope they can do something and he tolerates it well. I don't want anymore talks like last time. After his first op I got the "He may not survive the night" talk. He did though!! My little man is so brave and strong. He just has to be ok!

Jett's CO2 from his last gas was only 45 :) I am wondering if Dr D will bring his rate down on his vent. Maybe not, maybe she'll just wait til after surgery. Jett should be having an echo on Monday to check his duct. He was supposed to have it the other day but Dr D wants someone in particular to do it.

I think that's all that has been happening. Jett still looks very cute :)

Day 104 & 105 - Contrast x rays started!!!

Day 104

It was a busy day today. Dr D came in this morning to do Jett's central line, unfortunately after trying for over and hour she admitted defeat and called on Dr C the director. He planned to do it in the arvo after his contrast, but as it turned out we got back too late, so central line will be done tomorrow. Jett is now in an open care system again because the cot can be moved up and down. He looks so big in it now!

Jett has been started on gentamicin and ampicillin for the e coli in his tube. Dr D thinks that it could be why his oxygen requirement had gone up as it was up to 50%.. She has also ordered an echo to check his duct.. He had pink lung secretions again so more vit K was given and it was decided he will have a vit K shot fortnightly now.. His lasix has been dropped from 4 times a day to 2 :)

Jett's ventilation was increased because of the sedation so his rate is 50, Pip 24, peep 7 and oxygen around 50%.

The contrast

Jett was given 2 bolus doses and a continuous infusion of morph and medaz for the insertion of the central line so he was totally wacked out when he had his contrast. We went over to the children's at 1pm. I went in there with him and they started by putting contrast down his naso gastric tube. They x rayed and waited but it wasn't moving past his stomach. They decided they would wait an hour and a half then x ray again. So we waited in the x ray room til after 3pm then they started again. The contrast still hadn't moved past his tummy so they decided to put the contrast in his drain. The contrast went through up to his stomach, so they don't think there was a blockage, they just think his stomach doesn't work because he has never really been fed. Anyway, we don't get official results til all the contrasts are done. The next contrast will be an enema and will be done once the contrast from the NG tube and drain has gone.. Jett slept the entire time Lol. His first outing and he was fast asleep!!! I am getting impatient now and just want this all to be over. I think surgery will be next week..

Day 105, the 2nd contrast, very unexpected!

Jett was still a bit sedated this morning, even though his infusion was stopped last night. He was given another bolus dose before Dr C finally put in the central line though. The central line went in at about lunch and I spoke to Dr D after that and she told me Jett's next contrast may be this arvo which was really unexpected! Sure enough at about 2.30 I got the call and they said radiology wanted him over ASAP. So at about 3pm we were back at the children's hospital while my lil baby had a catheter in his bum and contrast through it.. The contrast didn't take long, it moved quite quickly so we were out of there in no time. Again, no official results but the contrast went through what looked like most of the large bowel :). Jett was asleep through the procedure, but he woke up on the way back.. He was wide awake looking around. I was pointing out trees out the window lol, he had his eyes squeezed shut because it was so bright! I think he liked his little adventure though :)

Not sure when the next contrast will be, I'm hoping it will happen quickly. The next contrast they will put a catheter in his penis and put contrast in his bladder. This is to check if there's a fistula between his bladder and bowel. My poor baby, it's so invasive :(..

Jett is still in his open care system, I'm hoping now his central line is in he can go back in his big boy cot. I want to be able to sit him up again so he can look around, and that can only be done in his other cot. He wont be able to have big boy baths anymore because his central line is right up the top of his arm, near his arm pit. It will be too hard to keep dry.. I am hoping for a cuddle tomorrow, I haven't had one since Sunday!

Jett's rate is back down to 40, pip, 22, peep 7 and oxygen came down a bit to 46%. Echo didn't get done today.

I think that's it, a very busy couple of days!!!

Day 102 & 103

Day 102 - Cuddle day :)

Jett was quite unsettled today, he wanted to suck on his dummy all the time. I don't mind, but because of the tube he can't keep it in his mouth so someone has to hold it. I hold it when I'm there but I worry about when I'm not there. The nurses haven't got time to sit and hold his dummy so he gets upset :( His oxygen has gone up to about 45% today which is quite high. We had cuddles in the evening and he was really settled, but after about an hour he was a bit restless. I still had him for 3hrs though, I'm not sure when I can have another cuddle..

Day 103

Well today Jett was supposed to have his central line out in and some bloods taken but the nursery was really busy with a new admission so it will be done in the morning. I am disappointed because I was hoping to get in a sneaky quick cuddle before Jett's contrast. No such luck :(

Jett slept most of today which was good considering he was so unsettled yesterday. I have been trying to settle him without his dummy and it has worked today. His oxygen requirement has increased again though today up to 50%. It's unusual considering he's not agitated or anything.. He is still needing fairly frequent suctions his lung secretions are still quite thick.

I thought Jett had another eye test today, but the Dr checked the notes and he was given the all clear with his eyes and doesn't have to have them checked for 6 months :) Makes Mama very happy :)Tomorrow will be a busy day with his central line and contrast x ray. I really hope everything goes ok.. Pray, light candles, send vibes, do whatever you believe could help us get good new tomorrow :)

Day 100 & 101!!!!!!!!!!!!

100 days!!!

Well today the nurses decorated Jett's cot with balloons that said happy 100 days and made a beautiful card which lots of the nurses and Drs signed :), he also got a blanket and a couple teddy's..

I got a date for Jett's first contrast xray. It will be on Tuesday. I was given dates later in the month but when I saw the surgeon she said that wasn't right, so she had them changed to when they were supposed to be, which is next week. Just to recap in case you have only recently started reading, Jett has to have an xray with contrast to see what's happening with his bowel. He will have to have 3 contrast x rays, the first one they will put dye down his naso gastric tube, then a few days later they will put some dye in his bottom, then a few days later they will put it in his drain, which sits in his small intestine. The x ray will show where the dye goes and hopefully show where the bowel is narrowed. It is possible some of the bowel has died so it should show that. Hopefully from there the surgeons will make a plan soon after to operate. What they want to do is open him up and untangle his bowel and be able to separate the bowel that has adhered to his abdominal wall and liver. Once they do that, we are hoping he will have enough good bowel to allow them to cut out the affected part and join the rest up so he can start having feeding and absorbing nutrients. It will be a huge operation...

They had to do a rectal biopsy on Jett today :( it involved just taking out 3 small pieces of bowel to rule out Hirschsprung's disease, which is a blockage of the large intestine due to improper muscle movement in the bowel. They think it' s unlikely that he has it, but just want to rule it out before he has this big op.. He handled the biopsy well, it is really quick and the sample they take is from a part that has no pain receptors.. Even so he was given panadol and breast milk and Mummy was there holding his hand..

I also managed to get a midstream urine catch, but the results of that aren't back yet.

Jett and I had a lovely 4hr snuggle in the night time :), so so relaxing. No place I'd rather be and a lovely way to spend his 100 day birthday.

Day 101 - Jett's due date!!

Today I walked in the nursery to see my baby sitting up!! It was so cute. The nurse raised the back of his bed up and he was sitting up wide awake watching his mobile. He is so interactive. He loved it :) After that he had a big boy bath. The nurse made the water deep and he just floated in it. He splashed his arm and gave little kicks.. Very cute :)

After his bath the dressing of his central line was taken down because the tape was a bit tight around his arm. Unfortunately his central line had split so it had to be taken out. This means he has to have a new one because that's how he gets his nutrition :(.. It wont be done til Monday though, in the meantime he is just having fluids through an IV. The IV went in really easily, now he's older and his veins have had time to recover.. So next week will be a huge week for my baby, Monday he'll have central line and he also has to have bloods which involves having an arterial stab, then Tuesday it's off to the children's hospital for his x ray!!

I am really scared about the coming weeks, but kind of glad things are starting to move. We have been stagnant for so long. I know things could go either way, I'm just hoping it's the start of Jett's recovery and we can start looking forward to getting him home!!!

Some pics of my baby sitting up :)

Day 97,98 & 99

Well, the last few days have been uneventful. That's good, boring and uneventful is what we want :) The contrast xray is definitely next week, but no date or time yet. It's possible I could just walk in one morning and they tell me it's that day. I hope not, I need at least 24hrs to mentally prepare for it! I'm really getting nervous about upcoming surgery...

Jett's oxygen saturation parameters have gone up again since he is full term. Dr D wants him saturating between 92 and 95%. This meant at first his oxygen requirement came up to about 35%, but today it's back down. He hangs between 27 and 30%.

We had lovely cuddles last night for nearly 4 hours. By the time he goes back to bed I'm dehydrated lol, I don't care! I love love love cuddles with my boy!

He had his blood gas this morning and his CO2 was 63 which is really good for him :) His potassium is good still too. His urine out put is still great averaging around 90mls every napy change which is normally 6hrly.

Today he had his first ever big boy bath! Her loved it. He was crying during the transfer but as soon as he was in the water he relaxed straight away! He was splashing one arm about, the other had to be held above the water because of his central line. He had me bathing him, 1 nurse holding him and the other nurse holding his central line and ventilation tube! He will hopefully alternate now between sponge baths and big baths. His weight today was 3832gms :)

Dr D wants us to get a midstream urine sample. So each nappy change I stand there with a sterile jar waiting to catch his wee. Cheeky little monkey wont wee for me though! Normally he loves to wee as soon as the nappy is off, but not now we actually want him to! The reason Dr D wants the midstream is because she wants the cleanest sample possible to try and determine if there is bacteria in his wee, or if it's just on his skin..

My Mum and grandma come today :) Gana has never met Jett before, it's so exciting!

Day 94, 95 & 96 - Happy new year!

Not a lot has happened over the last few days, Jett had cuddles on new years eve in the arvo, he was wide awake and very alert :)He slept the new year away though, I was there at the stroke of midnight and he was fast asleep :) Ventilation is remaining stable he is on about 29% oxygen and up to about 33% for cares etc..

He had his wash and weigh yesterday he weighs 3685gms but he looked like he had a bit of edema, they are using 3590gms as his working weight. Since he has been on the potassium sparing diuretic they haven't needed to add potassium to his TPN, he has had blood gases the last 3 days in a row to check his potassium levels and they have been good. His CO2 has been much better since his rate has been increased to 40, his CO2 was 65 yesterday and about 71 today I think.

Today Jett has another eye test :( they are going to do his first though because it is cuddle day again. I was supposed to have him after his arvo cares but now I have to wait til they have done that. I am hoping a cuddle will settle him though after the trauma of the test. I hope it makes me feel better too,I feel like crap, I'm exhausted and emotionally drained. I am feeling very anxious when I have to leave Jett now he is more awake. He has been totally off the morphine and medazalam since Friday night.. He is so alert and a real wriggle worm. He is so beautiful, I love him so much, I need to have him home, my heart just aches to have him in my arms. I have been having trouble sleeping even though I am so tired. It's so awful and unnatural to leave my son and I hate the thought of him crying without me there to comfort him. I can't wait for the day he is home so I can just snuggle him all day and night, I want to be able to sleep next to him not in a different building, I don't want to have to leave him ever unless it's my choice and I feel ok to do do it. I hate having to choose between sleeping and being with my son, eating and being with my son. I just want a normal life with my baby. I want it to be how it should be.

New years even snuggles :)