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Sunday, May 13, 2012

Final post..

I never did really write a post that wraps up our journey.. I guess it's because the journey isn't over. It has just taken a different turn..

Today is Mothers Day. My first Mothers day with a living child. We have had a beautiful day. Jett is the light of my life, but I also remember his brothers and will always wonder what life would be like if they were here..

I found this poem and I thought it be appropriate to post here.

A Different Child By: Pandora MacMillian

People notice there's a special glow around you.

As you grow, surrounded by love, Never doubting you are wanted; Only look at the pride and joy In your mother's eyes.

And if sometimes between the smiles, There's a trace of tears, One day you'll understand. You'll understand there was once another child. A different child who was in her hopes and dreams.

That child will never outgrow the baby clothes. That child will never keep them up at night. In fact, that child will never be any trouble at all.

Except sometimes, in a silent moment, When a mother misses so much that different child. May hope and love wrap you warmly And may you learn the lesson forever...

How infinitely precious. How infinitely fragile. Is this life on earth.

One day, as a young man or woman, You may see another mother's tears, and silent grief Then you, and you alone, will understand and offer the greatest comfort.

When all hope seems lost, you will tell them with great compassion,

"I know how you feel. I'm only here, because my mother tried again"

And my Darling Jett, I'm so glad I did! I love you my Son, everyday I feel so lucky and so blessed. You amaze me everyday. Thank you for coming into my life xx

Sunday, March 4, 2012

Day 156 & 157 - WE'RE HOME!!!!!

Day 156

Last night we got the worst sleep, there was a child crying most of the night (not Jett), then at 4.50 the nurse wanted to do his obs and woke him! So unnecessary as they only needed to be done once a shift!! So of course when he woke he wanted a feed so first we had to undress him and weigh him. Poor lil Bub was cold and hungry it was awful!

I continued to push for discharge that morning, Jett was weighed twice, before a feed and after. His after feed weigh was 15gms heavier than yesterday's after feed weigh, so it took some negotiation with lactation consultants and dieticians as well as the paediatrician but they agreed to discharge us and just h ave me bring him in for weighs. It was awful having my son treated like he's sick again, and having us analysed. I had questions about my milk supply, which was fine until I started stressing!!! Even after they agreed to discharge though they first wanted to have his oxygen saturation monitored overnight, just to rule out his chronic lung disease as a problem slowing his weight gain. It was frustrating, but the registrar was willing to compromise so we went home agreeing to come back and stay overnight to have his oxygen monitored.

So home we went :), it was an amazing feeling, loading my son into his car seat and driving him home. I came home and sat on my lounge with him and relaxed for a few hours.. We had to be back at the hospital by 8. It was hard to go back, but I knew it would be my last night. So we got back and they put his pulse oximeter on and of course his sats were 100% Lol.. I knew they'd be fine. I was pissed off going back when we could have stayed at home. It was a frustrating night I just wanted the next day to come..

Day 157 - DISCHARGE!!!!!

After another awful nights sleep, I was sleeping upright most of the night because the nurse was strict on not letting us co sleep. I wound my bed up and held him, so if she popped her head in it looked like I was feeding! Jett just didn't want to sleep in his cot. He shouldn't sleep alone if he doesn't want, he has had too much of that. It's time to be with his Mummy whenever he want!!

At about 8am I started on my rampage again, pushing for discharge. The Dr that saw us this morning was actually normal. Not sure if he was a paediatrician or a reg, but he saw clearly that we didn't need to be there and we were out the door soon after :D I have to take Jett to get weighed on Monday and Tuesday then if he hasn't gained weight we'll see the dietician. We also have his audiologist appointment Tuesday too, so first week home will still be busy!

Leaving the hospital...... Aaaaah, freedom. What more can I say. Being at our local hospital was hell. They treated Jett like he was sick and treated me like I had no clue what I was doing. It was actually quite awful and even after we got out of there I was quite stressed. I'm worried about my milk supply so I am back to pumping as well as feeding. The LC (Lactation consultant) wants me to pump after EVERY feed. It's just impossible, so I am aiming for 4 or 5 a day. Jett is a booby monster, so hopefully the milk I lost with all the stress will come back soon..

So we came home and friends helped me unpack. I have recently moved house and although friends had helped me by doing most of the work before we came home, there was still a bit to do. Most of it is done now though, thanks to my wonderful friends. The main thing I did was set up Taite and Seth's cabinet :) I don't have their ashes anymore, but I still have 'Their Space' Taite and Seth know their place in my home and my heart

I am so happy tonight, some of the stress has gone, but I think it will take a few days to sink in. I've always wanted to be a Mummy, I have waited a long time for this. What a journey. 12 days in ICN with Taite and Seth was just the beginning of my journey and finally this chapter is closing. I got what I wanted. After struggling to fall pregnant,losing my twins then spending 138 days in Intensive Car Nursery, 16 days in Special Care then 3 days in the paediatric ward in my local hospital with Jett I am now happy.

I FINALLY GOT MY TAKE HOME BABY :)

Now, another chapter begins as I start life as a very proud Mama to my very much wanted and much loved son :)...

Jett truly is a miracle. He has come home with no known long term affects and the only medication he is on is pentavite..

Thursday, March 1, 2012

Day 154 & 155 - 5 months old!!!!

Day 154 Wednesday! - Transfer to local hospital

Sooo, today Jett had his first breath of fresh air, if only for a second! We were back transferred to our local hospital :) Jett had his first ride in a capsule. He slept the whole time which was lucky because it would have been a stressful trip otherwise!

I had been waiting for transfer since Monday, but things kept delaying it. I thought it was never going to happen, but it did!! Before we left Jett had photo's with the nurses and Dr D.. I cried when I left. Mixed emotions, relief but I was nervous too.. New hospital, new policies and procedures, new nurses. RBWH has been our home for the last 5 months. I've made some great friends that I will miss. I got Jett's discharge summary. 5 months condensed into 6 pages.. Some interesting facts: Jett had 10 blood transfusions. 7 courses of anti biotics. It also states his ventilation time in hours!! We are really lucky, the only medication he is on now is Vit K weekly, selenium but that will be ceased Friday and his pentavite. We have his follow up audiologist appointment on the 6th March and his follow up eye appointment sometime in March too. We will continue to see the surgeons in Brisbane in about 4 - 6 wks and also the gastroenterologist. Jett's liver is getting better since he's been off the TPN though, so hopefully that wont be ongoing. We will see a paediatrician locally :)

So we got here about lunch time. We are in the paediatric ward which is great. We have a private room, I have a bed next to his cot and there is more freedom with visitors etc.. NO MORE HORRIBLE WHITE GOWNS!!! :)

I want to get out of here ASAP, but they are cautious because of Jett's weight loss. So annoying because it's only from going off TPN and starting full breastfeeds. They weighed him when we got here and there was a difference of 80gms. I don't believe for a second that he lost 80gms in 1 day! The registrar was overreacting a little bit talking about how we need to find the cause of his weight loss and how he needs to see a steady gain before we go. I was thinking we would never get out! At least I can stay with him :)

Day 155

Well today I spoke to a Senior registrar that had some sense. They started making a plan for discharge. They had a lactation consultant come to check Jett was feeding well and tomorrow they are going to weigh him before then after a feed to try and gauge how much milk he is getting. If they feel he's not getting enough they may look at top ups or getting the dietician involved to add some calories to his diet. Either way, discharge is soon :)I have agreed to bring Bub in for weighs whenever they want. I just want to go home!!!

This afternoon was really special.. I put Jett in a wrap sling and took him outside!! It was the first time he'd been outside apart from the quick few seconds during the transfer yesterday. It was so nice. I sat out on a chair and he had a lovely breastfeed :) I put him in the sling again tonight and he loved it. He fell asleep every time. Jett is also smiling more now.. Proper smiles, it's not just a facial :) I love to see my boy smile. He's so gorgeous!!!!

I have had some friends visit. It's nice to not have such strict rules and be watched constantly.. I barely see the nurses here, I do everything for Jett, they just pop their head in a couple of times a shift to do his temperature and ask about feeds and nappies. It's good. I have a telly in here, it's nice to have my son next to me while I chill out on the laptop or watching my soapies :) Jett was in bed with me last night :). It was beautiful.. I love co sleeping, but it will be so much better in my bed!

Being such a hands on Mum makes me think of what I missed out on with the twins. I think now I am not stressed about Jett I have room for some of the grief to set in again. I'm a mother of 3, not 1. To get to the ambulance yesterday when we were leaving the hospital we had to go past the morgue. I asked the nurse if that's where the funeral directors pick up the dead bodies up to transport them. She said Yes.. It's strange to think that Taite and Seth also left that hospital through those very same doors.. How different it is this time.. I am so lucky to be taking my baby home this time. A few weeks ago, I had no idea if I would or not.. Now, it's almost here :)

Well that was a long post! So much to catch up on. I'm sure I have forgotten stuff but that's all for now.. This blog will be finishing very soon :)Remember though, you can add Jett on facebook, search for Jett babybutton or mybabybuttonjett@hotmail.com and you should find him. Remember to include a message to say who you are or you wont be accepted :)

Tuesday, February 28, 2012

Day 152 & 153 - Smiles :)

The last 2 days have seemed to drag, nothing particular has been happening but last night I was very upset. I have been eating here at the hospital and last night I had a meat pie. About half and hour after that I felt faint and didn't feel right. I got the nurse to take Jett off me and I went into MACU (which is where I'm staying in the hospital) I layed down for a bit then went back to jett. When I got in there I was hot and cold and had to leave again. I ended up vomiting which meant I couldn't go back into the nursery :( I ended up getting a room at Ronald Mac house for the night and Jett had to be tube fed overnight. It was so awful not being able to see him. I felt ok after I vomited so I knew it was the food, but had to stay away regardless. It was the first time I have spent that long away from Jett since he was born. It was awful, I knew he'd be crying and wondering where I was.. I had a sleep and woke up at 2am which is normally when i feed him. I soent most of the night in tears and missing my baby so much.. When I got up in the morning I rang the nursery. I was told I had to stay away for 24 - 48 hours. Anyway, I called the CNC in the morning and explained that I had no more vomiting, no other symptom and that I was sure it was the food. So after some discussion with Jett's Dr I was allowed in THANK GOD!!! As soon as I went in he fed like he'd never been fed. I had missed hi so much I gave him millions of cuddles and kisses :) I was even rewarded with a smile. He is so cute he does a half smile and looks away as if he's shy.. He's only done it a few times, I can't wait til he gets a big grin.. I'm sure it wont be long now..

Today Jett had his bath and weigh. He now weighs 4628, so he only lost 20gms which is good. Hopefully he will start putting on weight again :)He loves his bath, but prefers being on his tummy. If I put him on his back he tries to roll over, so he spends most of the time on his tummy. I let water drip over his face today and he liked it. I think I have a water baby :) Can't wait til next summer!

Jett had bloods done yesterday, he doesn't even flinch when they do a venous stab, he's so brave. His coagulation factors in his blood are good and his solenium (trace element in blood) is on the low side of normal so he will only have a few more days of that and that should be ceased. His vitamin levels weren't back yet.That's about all that's been happening, Jett has been touring ICN in his pram getting loads of attention from the nurses. They all love him and can't believe how good he looks. He is still a bit jaundiced but it's slowly disappearing. Jett is 5 months old tomorrow! I can't believe it!

Sunday, February 26, 2012

Day 150 & 151 - 1st outing..

Yesterday Jett had his first outing.. Well, in the pram that is lol.. I took him in the pram around to ICN where we lived for so long! He didn't mind the pram, but he was a lot happier when the nurses took him out for cuddles. We got lots of pictures with the nurses and talked about back in the day Lol.. Jett is such a miracle. We were standing outside the room he had his first operation in and remembered the terrible news that was given. Both nurses were there that day. They said they remember so clearly how grim it looked for Jett. They themselves simply can't believe how far he has come :) I can't believe it's real.. I'm taking my baby home.. Soon :)

Today Jett had his weigh and he has lost more weight. 80gms in fact. Dr D said not to be concerned though just yet. I am just worried that we wont be able to go home until he shows steady weight gains.. Only time will tell.

Jett had his second hearing test today and failed :( In both ears.. Last test he failed the right but passed the left so it was a bit of a surprise. Anyway now we will see an audiologist in about 2 weeks so he can have further testing. I'm trying not to worry..

Jett is still feeding beautifully and is just the love of my life!! Can't wait to have him home!!!

If you would like to see some pictures of Jett, become facebook friends with him! To request his friendship search for: Jett Babybutton. Please include a message of who you are and how you came across this blog, all requests must have a profile picture and a message or they wont be accepted :)

Friday, February 24, 2012

Day 149 - Hearing test

So as expected Jett lost quite a bit of weight now that he's off the TPN.. He now weighs 4728. He did weigh 4898!! No one is worried just yet though, I just hope he puts some back on by Sundays weigh..

Last night was our second night of baby led nursing and Jett again had a great night. He had his last feed at 10 then didn't wake til 2am then 6am, so it was pretty much like the night before. Not sure if I mentioned in the last post but I managed to score a hospital bed on the same floor as Jett so I just stay here now. The nurses just call me when he wakes and I'm only 2 seconds away :).. Jett has still been feeding well during the day, he feeds just about every hour. I don't mind, I love feeding him and cuddling him. It's the best :)

Jett had his hearing test today. They put little ear muffs on him and connect 3 sticky dots (similar to ECG leads) to his head and shoulder. They then measure the brain waves which tells if there's brain response to the sound. Jett's right ear failed, but left ear passed. They re do the test and if he still doesn't pass with both ears we will then see an audiologist. I was a bit surprised he failed, he always responds to noise. I was wondering if maybe the ear phone wasn't stuck to his ear properly and it was letting other sounds in? Anyway I'll find out when they do it again tomorrow. He is at high risk because of the long term ventilation, oxygen etc and considering only a few weeks ago I had no idea if he'd even survive, I think if we get out of here with mild hearing loss in one ear, I think we have done ok.. I know he's not deaf. Anyway, whatever happens I'll deal with.. For now I'm going back to the nice thoughts of getting him home, which is closer than ever!!

Thursday, February 23, 2012

Day 146, 147 & 148 - Central line out!

Today Jett is 21weeks old.. He has been Earthside almost as long as I was pregnant!!!

Anyway...

Yay, yesterday Jett's central line got taken out! It was slowly weaned down and left at 1ml for about 16 hours then it was out! I was so happy I cried. The first time ever my baby is line free :). Jett isn't even monitored anymore. No oxygen sats or heart monitor woo hoo! He had a lovely bath being able to float and splash his arms. He had tummy time and looked like a little froggy. I think he'll be a water baby :). Jett got weighed and was 4898gms. He'll probably lose some weight now the TPN has gone but as long as it creeps back up he'll be fine.

Jett had no reaction to his vaccinations at all so I was glad about that. Home is sooo close.

After some persuasion I have been given a bed here at the hospital so Jett and I are on the same floor. We had our first night of baby led nursing last night and it went beautifully. He only woke up once through the night :). This means his NG tube can go! He doesn't need it for anything :) yay yay yay! I am so happy Jett is feeding so well. He fed every hour yesterday, so I only left quickly for lunch. Apart from that I'm here. Jett was awake all day yesterday except for 2 hours when he slept on my chest. Gotta go, bub's awake :)

Tuesday, February 21, 2012

Medication details

I haven't updated the info on Jett's meds for a while so while my snuggy boy is asleep on my chest that's what I'll do.

Daily selenium - this is a trace element he is deficient in. It was added to his TPN but he's been having it orally for the last few days.

Weekly Vitamin k - Jett was having fortnightly injections but is now having it orally and will continue to have it until his liver function is better. (He has conjugated bilirubinaemia caused from long term TPN)

daily pentavit - a multi vitamin he is on this specifically because he is deficient in vit A & D

Nilstat - both cream and oral drops to prevent thrush which can be caused from TPN

He had a stat dose of vit A yesterday and still has soluvit added to his TPN.

Jett had full bloods done yesterday which include liver function. He will continue to have these tests fortnightly until further notice :) Jett's head circumference yesterday was 38.8cm

Today Jett had his immunisations. He had 3 needles normally its only 2 but I didn't want him to have the hep B, so hey had to separate the vax. :( he cried but then when he had the oral rotateq he forgot all about it! It's really sweet so he loved it. I was cuddling him the whole time so of course he had a breast feed after :) he's back on full monitoring now for 24 hours to make sure he doesn't apnoea or brady. He should be fine though, at the moment he's sleeping soundly. :)

Day 144 & 145 - :)

Both yesterday and today Jett had big sleeps, he must be having a growth spurt :) I got massively frustrated yesterday because his TPN was put up to match his weight gain again! So for each Ml it was brought down, it only went back up! Also I was upset because they changed his NG tube overnight. They are not supposed to do ANYTHING without me there, especially because Jett doesn't even need his tube through the day, he could have had the day without it.. Anyway, I got over it and had a good day. The nurses know now, there are notes everywhere lol.

Dr D put Jett's feeds up faster today to compensate for the TPN going up over the weekend. He's now on 60ml 3hourly overnight and still demand feeding through the day. (I don't like the term demand feeding, maybe I can say we are doing baby led nursing?? )His TPN is coming down 1ml QID as his feeds increase still by 3mls. The TPN should be finished tomorrow night.. Yay! The central line will come out! I can't wait.. Then we will start baby led nursing overnight too!

Jett got weighed today, his weight is 4890gms which is great. I'm so happy he is putting weight on without his milk being measured. He may lose weight when the TPN goes. It wont matter though, as long as he starts to put it back on. Jett loved his bath today. It relaxes him and he sleeps well after it. I can't wait til he can float properly with no lines in!!!

Immunisations tomorrow :( I really thought hard about doing it, Sometimes it can make them go backwards in terms of needing oxygen. I don't think it will though. Jett is 6wks adjusted, he's not a tiny prem anymore. He is having all of them except Hep B. Not sure if I will keep with the schedule, I may delay further vaxxes..

I can't believe our time here is coming to a close... I couldn't be happier!!!

Saturday, February 18, 2012

Day 142 & 143 - 6weeks adjusted

Well my days have been about cuddling and feeding :). Jett is completely demand fed through the day and has fed every 1 to 2 hours. It's been great I have been able to ditch a few expressing sessions. Technically the lactation consultants advise you to express still but I'm too busy holding Jett. I still express in the morning, twice through the day and then before bed and my supply is great :)

Jett's tube feeds are going up 3ml twice daily which means the TPN is coming down 1ml twice daily. Bummer is they put it up because of his weight, but its back down to 7.77 now. Hopefully Wednesday it'll go. Then we can start demand feeding overnight too. Jett's weight today is 4828gms, its good he's putting on weight he's obviously getting enough booby milk :)

I'm really happy feeding is going so well. I am so happy. It shouldn't be much longer and I'll have my son home! I'm finding it quite challenging because Jett needs so much stimulation and its hard being stuck in the one spot. I'm getting head aches all the time from having a sore neck, although the last 2 days I've hidden in the corner with a recliner lol. I'm getting spoilt, if there are any meals spare I always get them. Most of the nurses know me well ;)

Well I'm on my phone and Jett is waking so next update will be in a couple of days :)

Friday, February 17, 2012

Day 140 & 141 Baby led nursing :)

As I write this Jett is asleep on me :) We got a spot in the back corner near the window. It's because it has more space for all Jett's crap lol.. I joke its one of the perks for being long termers lol. (I love to hide in the back corner lol) Anyway I'm on my phone with baby in arms so excuse lack of punctuation and spelling errors.

So we are going well here in special care. Jett is now having 5 breast feeds a day, if he's awake, I feed him. I am going to chat to the clinical nurse consultant about staying in parent craft and doing 24 hour demand feeds. At the moment he is still being tube fed at night.

Jett is still on TPN but not for much longer, Dr D is going up faster with his tube feeds as of tomorrow which means TPN should be gone very soon. At the moment he's on 36ml feeds three hourly, then whatever he gets on the breast. Lasix will be weaned tomorrow and yesterday Jett came off his heart monitor. All he has now is his oxygen saturations probe. We will be getting transferred to our local hospital in a week or 2. I think all Dr D is waiting for is for him to tolerate full feeds (60mls 3 hourly) and be off TPN. Immunisation will be early next week so he will be monitored for reactions. After that though, we'll be off..

Jett has put on 34gms so he now weights 4754. It's good he is putting on weight, especially since he has come down on tpn and is mainly having breastfeeds. Obviously he's getting enough. My milk supply is so much better. I'm still on motilium, but having Jett feed has done wonders. Can't wait til the pump goes completely!

So it looks like we could be home soon yay! I am loving being a mummy that can do things for her child! I get here and feed him, then we either do tummy time or he has time in his vibrating rocker, or we have cuddles. Whatever Jett wants :). He doesn't sleep a lot during the day, so I get no time to do anything at all now.. I literally leave the nursery for about half an hour to eat then I'm back again.. He loves to sleep on my chest though :) It's just hard to nab a comfy recliner so my neck has been in agony from sitting uncomfortably all day. It's worth it.. Having him home will be so nice. He is so amazing, He is soooooo beautiful. I love him so much. I love the way he looks up at me when he's feeding. Just makes my heart burst with love and pride. My perfect boy :) So many people are proud of him! He's still the most visited baby by nurses. Lots of ICN nurses have come in to visit us in special care.. HE is a very loved boy!

Tuesday, February 14, 2012

Day 138 & 139 - Hello Special Care :)

Day 138

My baby is so clever! He had 2 breastfeeds today and didn't need to be topped up with a tube feed! He sometimes plays around but generally he attaches really well.

The physio came to see us today and we had tummy time on a play mat. He did really well with his head movement and follows toys.. He appears to be developing really well and reaching the milestones he should be for his adjusted age. Everyone is really happy with his progress.

Day 139

SPECIAL CARE!!!
This morning I came in for Jett's 8am breastfeed and was told that we were moving to special care. I was so happy I burst into tears.. Then I couldn't stop crying lol.. The other good news is we have gone up to 3 breast feeds a day, they are increasing every 2 days :)

Dr D came in this morning and Jett was happily feeding, Dr D said "Well I see you 2 have settled in well" :) It took us all of 15 mins lol..

Jett's breast feeds have gone well again today. He had a good feed for his 8am, without needing topping up with the tube, but his 2pm feed I woke him up for. He wasn't impressed and was more interested in sleeping than feeding so we tube fed him. He had a bath at about 3 then started showing cues, so I tried again and he did great. Attached really well and fed for quite sometime. I find in SCN (Special care nursery) it's more baby led. If he cues earlier than his feed time they are happy for me to feed, if he stops he can go back, so he ended up feeding on and off for an hour.. I love it. He looks up at me with these big eyes. Pure love..

Jett was weighed today, he has actually lost weight. Only 10grams though. He now weighs 4720. I'm wondering if it's because he's come down on the TPN. I hope he doesn't lose too much. That is what could stop us from going home.. He will be completely off TPN in about 10 days Yay!!! I'd say it wont be long after that we will be transferred to our local hospital. Then HOME!!!

I am really hoping we only have another month in hospital.. We are closer to that door though!

I am loving how awake and interactive Jett is. He has time in a vibrating chair in the mornings. He loves it normally but didn't this morning, he just wanted to be held.. So I held him :) I have mastered holding baby and pumping lol.. He almost smiled at me today. It was kind of a half smile. Very very cute! It wont be long.. I think he's about 5 weeks adjusted. He is a story teller. A chatterbox like his Mama :) He loves to be held. I hold him all day, then sometimes I try to sneak him back to bed.. Sometimes he stays asleep other times he doesn't. If he doesn't I just pick him back up again.. Luckily though he did sleep after his bath and feed so I was able to come back and have dinner. I am back at the house now, I will be going back for his 8pm feed, but I told them to call me if he wakes earlier. I wonder if they will lol..

The nurses seem nice so far, I miss my ICN nurses though. We built up a rapport over the 139 days lol. Some of them (MOST) really loved Jett and I think they are really happy he is doing so well..

He truly is my miracle baby!! I am so proud!

Sunday, February 12, 2012

Day 136 & 137 - I love having a booby baby!

Day 136

Not much happened today, Jett had a breastfeed for his 11am feed, he latched, played latched played then the last time he latched he sucked for a bit. I had a letdown and he coughed and spluttered a bit! He then did a huge burp and fell asleep! Lol..

We had cuddles ALL DAY. The only time he was in his cot was for 2 hours at quiet time and for half hour at handover! There was a spare hospital meal the nurse offered me so I didn't even have to leave for dinner, I just went in the parents lounge and ate :)

I absolutely LOVE being able to just walk in and pick my son up if he's crying! We love cuddles!!!

Day 137

Today Jett did really well at breastfeeding. He latched straight on and fed for a bit. He still plays but I am just so happy he can latch. I was so worried about having latch problems. I knew he wanted to, he's always been a keen sucker on his dummy etc, but as we were both learning I thought it could take some time.. No, not my boy.. He's starving Lol.. Then this afternoon we had a second feed and he was on for about 20mins!!! About 15 of that would have been good sucking with a stop for a burp in between! He even managed to latch back on by himself!!! I am so happy. THIS makes expressing worth it. This makes me feel like although I couldn't carry him to term, at least I can nourish him now.. Plus it means the sooner feeds are coming along the sooner we can go home!

Jett's TPN is down to 12 now, so a maximum of 12 days and he will be on milk completely. Having said that we have to watch he is putting on weight. He was weighed today and didn't put on anything. He was exactly the same.. At least he didn't lose weight..

Jett loved his bath today :)

Anyway this is a rush post, gotta get back to my baby, he's probably wanting Mummy cuddles!!! He has a lot of awake time now. I love it. He entertained some visitors over the last couple of days.. It's so good to see! I'm in love love love!!!! :)

Friday, February 10, 2012

Day 134 & 135 - Breathing and feeding!!!!! :)

Day 134

Jett's off cpap!!! He's so clever.. Just breathing on his own! It's so beautiful to see him with no tapes and crap on his face.. We had the best cuddle. I just stared and stroked his beautiful face for hours.. He had 4 stinky nappies for me to change yesterday!! Everything is working as it should... I'm so happy :)

Day 135

Wow, today has been huge!!! Since Jett has been off cpap since yesterday, it was time to move on.. We moved into a transition room. It's still ICN, but next stop is SPECIAL CARE! We will be there soon I'd say.. Maybe by the end of next week depending on beds etc.. Another step closer to being home with my son!! Jett was weighed today.. Little fatty is 4730gms! He is big, but when I saw a nurse cuddling him he still looked so tiny. He was dressed in triple zero clothes yesterday, but today I got him into a 4 zero.. It fits him, but not for much longer...!!!

The highlight of my day though wasn't moving rooms. It came about after we bathed and weighed Jett. The nurse said i could try breastfeeding!!!!!! I expressed first because Jett is only on 18mls so we didn't want to overload him. Jett latched straight away but only sucked for a minute or 2 before just playing. It was so good though :) Then this afternoon I tried again and it it took him a bit longer to latch but he went like a champ.. My little baby fed on and off for about half an hour, stopping for a burp and a play in between.. It was so normal and natural. It was absolutely everything I wanted it to be :) I feel like a Mummy now. I am so over the moon. It was so nice to pick my son up, breastfeed him, then hold him for ages while he slept on my chest.. Absolute bliss!!!

Since I've never fed before, I have no idea if he was attaching correctly, but he seems to be and it doesn't hurt. I was concerned about his ability to suck after being ventilated for so long, apparently a high palette can do damage to your nipples.. Oh well, it felt so nice and Jett was very very happy.. He was milk drunk with the hiccups and passed out on my chest after.. Seriously the best feeling ever... It make all those hours of pumping so worth it... I couldn't be happier! Things just get better! Can't wait to go home and I'm so excited that I have started what I hope will be a long breastfeeding journey!!

Wednesday, February 8, 2012

Day 132 & 133 - Cycling off CPAP!!

Day 132

So I walked in today and saw my son's face.. All of it!!!!! Without tape!! Dr D had given him 6hrs off his CPAP! He loved it, he did so well. It was a very quiet day, Dr D wanted minimal handling to give him the best chance of keeping the CPAP off. I didn't miss out on my snuggle though, I just did it in the arvo when he was back on..

Jett went up to 9mls of milk today, he had a massive spew in the morning, but it was after his meds and vitamins as well. The pentavite makes most babies spew. He tolerated the rest of his feeds really well.

His bowels are definitely working. In fact just after I got him out last night I saw him grunting and sure enough then came the smell so I had to change his bum before we could settle for our cuddle. I wonder if I'll ever get sick of him doing poos lol.

We had a really nice cuddle, I had him from about 7.30pm til after midnight. I would drift off to sleep and wake up to my gorgeous boy. It is the best. He was very comfy and slept most of the time, although at first he was trying to latch onto my chest so I had to cradle hold him :)

We haven't moved rooms yet, but it is definitely on the cards.. I'm excited but it will be weird! We have been in that room so long! I started going through my stuff here at Ron's and packing up. Basically now it's just my clothes and toiletries that need packing.. I'm so ready to go home!!!

Day 133

12 hours off CPAP today! From 9am til 9pm.. He has again done really well. He had his bath and weigh today as normal and I had a cuddle :) It was really nice cuddling him with nothing on his face. Normally I only have him for about 5mins before they put it back on. Not today though.. He snuggled right up into my neck and fell fast asleep. So natural and normal..

I can't remember his exact weight today, it's not that significant now, as long as he keeps putting weight on, which he does! He was about 4.7kgs.. I have him dressed in a triple zero T-shirt.. My little boy is growing up..

He went up on his feeds, 12mls today, no vomiting and his aspirates are scant :) He has pooed twice today! If he keeps this up his feeds will keep increasing :) I can't wait til we can try him at the breast. Dr D said he has to be on 30 - 40mls per feed.. Hopefully it will only take him a couple of weeks to get up there.. His TPN (Total parental nutrition) is being weaned 1ml per day as his feeds increase. So he's on 19mls, which means 19 days and all going well he'll be off it. No more central line... Then we really will have freedom. I have spoken to the nurses about taking him outside and once that central line goes I should be able to. Wow! That will be such an amazing moment, taking him outside for the first time! I can't wait!!!

So many things to look forward to now!!! I'm so proud of my little Jett Plane. I am so lucky to be his Mama!!!

Monday, February 6, 2012

Day 130 & 131

Since this journey is not an emotional rollercoaster anymore (YAY!!) I am thinking of finishing this blog soon.. What I will do instead is create a facebook page for Jett, that way I can control who is able to follow his journey instead of having it public on the net for anyone to find.. I will announce when it is the last ever post, I wont just stop posting, and I will also give details of the face book page so people can request to be added.

The reason I started this blog was originally to give people who have lost babies inspiration that you can get your happy ending.. What it turned into, was a very full on account of what the journey of having a premature baby can be like! I hope that this blog can help other people and give them strength to believe.. Miracles do happen.. Just look!! I feel so blessed :)

Jett at 9 days old

Jett now at 130 days old!

Day 130

Jett is still going really well, he had lovely cuddles yesterday :) I love getting sneaky stand up cuddles in when he has his CPAP off :)..

I ended up having to buy a deep freezer for my milk. I tried to get away with it, but I have filled another 2 drawers at the nursery.. I am donating some, but I still want to save most of it for just in case :)..

Day 131

An eventful day today! Jett's CPAP was weaned to 5 which is the lowest it is weaned to before it comes off. Dr D said after he's been on 5 for a couple of days then she'll cycle him off. Probably 6hrs off, one day, then 12 hours off the next then hopefully off!!! I would love if he was off by the weekend!

Jett had a bath today he isn't really liking his big baths at the moment. He cried the whole time.. It will be better when he gets his central line out and he can have a proper float.. I think he would enjoy being on his tummy in the bath too.. After his bath he had his weigh. He weighs 4644gms now! He has put on a bit of weight! Must be that Mama's milk!

Jett's feeds increased today!!!!! :) Yay! He is now on 6mls every 3 hours and every day it will increase by 3mls, so 9mls tomorrow! I asked Dr D when I can try him on the breast and she said he has to be on about 30 - 40mls per feed.. If his feeds keep increasing and he tolerates it, hopefully that is only a couple of weeks away :)

I think we will be moved to special care in the next couple of weeks. Once he is off CPAP and Dr D is confident he wont go back on it, it should be time to move on! It will be so weird to be out of ICN.. We have been in that room since Jett's first surgery!

Jett had bloods done today. Liver function, a full blood count and they tested some of his trace element levels.. I put EBM on his dummy and he didn't even cry! He is so so brave!

Today I have had 2 cuddles of Jett. Once this morning after his wash and weigh then this arvo he was unsettled so the nurse was happy for me to get him out. He settled straight away (of course!) and was fast asleep soon after. There is no point in him trying to settle him in his cot when he just gets more distressed. If I was at home I would pick him up more than once a day! I'd pick him up whenever he wanted cuddles.. He loves cuddles!

Jett also loves sitting up like a big boy! A change of scenery does him good! Here's a pic of him during some quick time off cpap!

Saturday, February 4, 2012

Day 128 & 129 - Every day is cuddle day!!

Day 128

Yay! I got permission from Dr D to have cuddles every day!!! When he's crying he loves cuddles. He settles straight away when he's with me..

Jett is going really well, the surgeons took Jett's dressing down yesterday and it looks really good. The scar is right across his tummy, but really neat. He can make up whatever story he wants to in years to come :)

The surgeons are happy to increase Jett's feeds when Dr D wants, she is just staying at 3mls though for now because he aspirates are still quite large. Maybe Monday his feeds will increase..

Jett had a nice night, sitting up and being entertained! The nurse that had him is so nice, she pays him loads of attention.. He has a rocker type chair she got for him. He loves sitting up like a big boy!

He's still doing really well on CPAP.. No bradys or apnoeas :)

Day 129

Jettski had a bath today and a weigh. He weighs 4.5kg now.. I can't remember the exact weight. He wasn't sure about the bath today, he cried on and off. We had cuddles straight after. I had him wrapped up and we snuggled together for ages. He was passed out it was so cute.. I hate having to put him down to express!! He has slept most of the day. I bet I am in for a good night tonight.. Hopefully if he's unsettled I can get him out again. Jett's CPAP was weaned to 6 today.. He is just doing so amazing.. On Monday dr D will most likely wean it to 5 then he will start having time off.. Maybe 4 or 6hrs at a time.. At the moment he only has time off during baths and cares. He really loves it and maintains his oxygen sats beautifully.

We might be getting moved to another room soon! It's still ICN but it's the transition room to special care... Oh yes, discharge is close!! (Well closer than it's ever been!!) I am so happy at the moment, I have a few things I need to sort out, but it'll be done. Nothing can bring me down :) I just love being a Mum to a living baby!!!! I can't wait to get home!

Thursday, February 2, 2012

Day 126 & 127 - Feeds started :)

Day 126 - cuddle day

Yay!! Jett started on Mam's milk today! 3mls every 3hours. They started at 8am. I was disappointed they didn't call me and let me know, I missed it by an hour :(.. Anyway, I got over it quickly and I was there for the next one. It is so exciting!! Jett's bowels are definitely working too.. Yay again! Lol..

We had a cuddle this afternoon, it was so nice. We didn't have skin to skin though, I didn't bother undressing him. When he was passed to me, I had him with nothing on his face for a bit. He was smooshing his face into my chest it was so cute. It was so nice to not have to worry about the tube! His CPAP went on soon after but even then if he slips down I can reposition him. It's so much easier. It's nice to hold him in different positions and look at his gorgeous face! We did get pics, but they aren't very good.

Jett copes so well off the CPAP, he'll be weaned fairly quickly I think. :)

Day 127 - wash and weigh

Well to start the morning Jett's CPAP was weaned to 7 from 8 yay!! I forgot to mention when he first went on CPAP his oxygen was 26%, now it's 21%.. (Same as room air!)

Jett had a big bath today :) With nothing on his face!!!!! We still had to be careful to not get his central line wet though. I can't wait til that's out and he can just float around! He cried during most of the bath.. I love hearing his cry.. He cries so loud now.. It's the best sound ever!

He is loving food, I have been putting EBM on his dummy when they put his feed down the tube so hopefully he will make the connection with the taste and suck. It must be so strange for him to have a full belly! He has been aspirating back most of the milk but Dr D said that'll happen, it will probably take a while for his gut to know what to do..

Jett was weighed today, he has lost a bit more weight he weighs 4406gms now..

The surgeons are really happy with how he is, they are going to take his dressing down tomorrow. Hopefully it has healed nicely and wont need to be re dressed.

I am so happy with the ways things are going, Jett is doing poos everyday, breathing and eating!!!! Sounds so basic, but it's definitely such an achievement. He is doing so well on CPAP and he does great off it. It just goes to show that if he didn't have gut problems he would have flown through and we'd be home by now.. It is amazing to think where he came from compared to where he is now. I can't wait to go home.. It's not that far away!!! :)

Snuggy cuddle with Mama after Jett's big bath!

Aww look at that gorgeous face!!!

That's a bit of a huffy face!

CPAP back on, look at my cute outfit!

Fast asleep after my exhausting big bath! Catching flies lol

Tuesday, January 31, 2012

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!!!!! :)

Sunday, January 29, 2012

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!!

Saturday, January 28, 2012

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!!)

Friday, January 27, 2012

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..

Thursday, January 26, 2012

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!!!!!

Wednesday, January 25, 2012

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!!! :)

Tuesday, January 24, 2012

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 :)...

Saturday, January 21, 2012

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..

Thursday, January 19, 2012

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 :)

Monday, January 16, 2012

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..

Saturday, January 14, 2012

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 :)