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 :)