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..

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 :)