There's no place like home!

We finally left the hospital about 7pm...maybe a tad earlier but I don't think so. I knew we had a very excited little girl waiting for us at home who also needed to get to bed for school the next day.

His hearing test before we escaped.

I so remember wrapping Jules up in his pram suit and tucking him in the car seat. I felt so very proud we were finally going to have a proper new parent moment. Everything else had been so wonky and about face.

Roger loaded the car as we seemed to have a whole lot of stuff from our long stay. 

I and I know Roger did felt very emotional...emotional as we handed back the key to our room that we had been staying in and emotional as we went and said goodbye to everybody. I did not want to do this as I just wanted to slip out as was not sure I could face everyone. People said how well he had done and I felt so strange. We said goodbye to lots of the other parents too wishing them well with their little (some very very little) ones.

Finally we were heading for the door, finally we were going to break free.

I think I cried the whole way out.

Very very proud daddy with his boy.

We had one last laugh and chuckle at the willies sprayed onto the ceiling of the lifts one more time. I remember looking at thes the night I was wheeled into this hospital and thinking how awful someone would spray onto the lift in a maternity hospital. It took me a number of days and looking at it from a different angle to realise they were winkies lol

Finally...our little fella smelt fresh air and had a breeze on his face...he frowned bless him.

We felt like we were stealing him. I love these pictures of Roger.

With the car loaded and Jules strapped in we headed home. I cried as we pulled out and stared at Jules the whole journey home not believing that he was coming with us. It was a moment I had not really dared to believe would actually come true.

The kids were starving as we had tried to order some food from Sainsbury's delivery the day before but they would not deliver it as Roger had not made it back in time so even though there was begging and pleading they took it away again...who'd have thought sausages and some pizza's etc would be so dangerous for a 17 year old!!

I dialled and ordered pizza to be delivered so it would be there when we got home....forward planning and all ;)

When we got home we got him inside and then did pretty much what I have done with all my other babies and that is plonked him down in his car seat and thought hmm what on earth do we do with him now. Everyone wanted a cuddle but he was asleep an the pizza turned up so I issued some threats about waking him, we ate the pizza and then let everyone have a cuddle. It felt so strange finally seeing him at home.

I had prepared his crib a week or so before I had him so it was all ready to go, waiting under a sheet to keep the dust off (paranoid mum). 

I can not even begin to tell you how utterly fantastic it felt to sink into bed that night. To feel the comfort. Those hospital beds are so flat and awful. The feel of the duvet after hard starchy sheet was amazing. Even using our own bathroom...all those things you take for granted.

I was waking Jules every 3 hours at this point even through the night till we knew he could take larger amounts to maintain his blood sugars so not entirely sure we had more than little sleeps in between feeding, changing and getting him back to sleep.

Waking the next morning to our gorgeous boy in his crib was a dream come true. What else was there to do apart from bring him into bed for a snuggle with mummy and daddy before his next feed and of course a fantastic photo opportunity.

During his time in NICU Jules underwent a lot of things....my next post will be all about that. I haven't finished, I have lots more to write about it all....aren't you all so lucky lol xx

Promoted To 'Homing in'.

Well once his blood sugars were on the level and seeing that I was in meltdown they agreed to let Jules come to my bedroom in the parents rest area.

I had been there for a week at this point. When he woke up I was turfed out of the post natal ward but they offered me a room for two nights. I really feel strongly that I was not capable of being on my own. I was in a lot of pain still and struggling to move. My pelvis was very bad after the operation. I felt very bruised down there so I feel that my legs and pelvis had not been supported. I suffered with SPD (Symphysis Pubis Dysfunction)so it 
must have been easy to cause me pain what with it being a tad 

delicate. I remember the first night laying in this single bed in a room so cold and drafty that the curtains were blowing.I was freezing, I was shaking and I do not feel the cold so bad. I did not know what to do, I could not move as my pelvis had locked and I was in so much pain from the c-section still and had been helping myself into and out of bed using the arms and headrest on the hospital bed when I had been downstairs on the post natal ward but here I was on a bed where there was nothing to grab hold of. I felt totally stuck. I think I cried just about all night.

Roger had to go home and check the kids plus I wanted to know he was getting sleep plus he was bringing in and washing my bits for me and taking food back for the kids etc. I eventually managed to move enough to get my by now big fat swollen feet and legs (thanks to not moving much and being sat in a chair all the time in NICU with the heat etc) by using the weight of my big fat lardy body I had managed to grab hold of the sheet and kind of shuffle myself around.

The morning after the second night I felt like my life was about to fall apart. I could not stand to leave him now he was awake, it felt wrong. I know many people have to leave their baby in NICU but when they are months premature versus full term only in now to establish feeding I feel that it is important that Mum is on hand. I would never have been able to establish breast feeding with the rules as it were and I would not have been able to drive back and forth to see him due to the c section and we felt that Roger was being nagged by now for a date to return to work and worried if I was home and he was at work for 12 hours a day how and when would I get to see Jules? 

That morning I had a shower and fell badly, it was so slippery in there and I just remember being on the floor sobbing my heart out trying to figure how I was going to leave Jules. They realised I was in a bad way when I got to see Jules and when the ward matron said about me going home I said well I will leave the room but I am not leaving him, I am going to sleep in the car outside or on the sofa in the parents area. I felt very strongly about leaving him especially at night. I had mentioned before that the day nurses were amazing but the night ones were mainly foreign it seemed to be and one had left him in a dirty nappy for a number of hours that had made him very sore and she did not seem to care. It was heartbreaking for me to find him sore and wet and been left so long that it had dried to him. They checked the notes and confirmed he had not been changed yet I could smell it as soon as I got close to him. Likewise the same nurse was almost causing a fire by putting a tea towel over a spot light on the desk to dull the light...it was smelling burnt and I had to beg her not to put it on there and went and complained to the nurse in charge...my baby boy was right next to it and after this I felt I could not relax and would be up and down all night checking on him. I was getting more and more tired and more and more run down because of this and only felt I could go and get a few hours sleep when Roger was with him during the daytime or one of the daytime nurses I trusted was working.

Anyway they realised that we were both emotionally in a bit of a bad way, we had done this journey primarily very alone and the staff kept expressing shock at us being alone and I think it was one thing that worked somewhat in our favour as they took pity on us and offered us a double room which we then had for a few nights....so it was to this room that Jules was let loose to us.

I remember pushing him through the double doors in his crib and out of the pain NICU into the waiting area and then into the parents area and through the door to the bedroom to shock Roger who had been having a catch up nap. I think he thought I had finally broke and kidnapped him lol.

So there we were....parents alone with our gorgeous boy for the first time. First thing I wanted to do was change him and give him a wash so what was the first thing Jules did...yep he pulled out his nasal tube. Ten minutes after we had left I was back there explaining what he had done and that it was half out and what to do. I do not think they believed me and thought it was me I think but they told me just to take it out so I did :) he was now free of wires except the one monitoring his breathing.

We knew we had to keep an eye on his feeding to make sure his blood sugars stayed up as we knew this was the catalyst for us to escape so I was waking him every 2-3 hours for some milk. I was even setting my phone alarm because if they came in to do a random check and his sugars were low he would be back to the ward. Well we worked really hard because each time they came he was doing really well. 24 hours after I made noises about wanting to go home. I had to get back due to child care for Jennifer and I had just about had enough and had severe cabin fever. I had been going out for the odd short try to buy bits or for a meal but I just wanted and needed my bed, Jules needed his family and the family needed us. They were very unsure and it took all day to get us discharged. The primary delay was waiting for the pharmacy to send up the prescription milk...then the consulant caught wind of our escape attempt. This was the one who had been leading us down the path to switch off life support about 10 days earlier. Jules had already been passed as fit to leave by a doctor but he would not let us go until he had checked him as he did not believe he was ready.

I held my breath the whole time he was examining him but shocked the consultant stood back and said I can not believe how good he is to me it seems he is a normal reacting healthy baby...and he signed us off...we had already packed by this point and were tapping our fingers to go, I think we may have walked anyways. I felt I had proved I could look after him safely and keep his sugars up etc and I wasn't stupid I would have taken him right back, in fact one of the nurses had said this that I had my wits about me and we would be fine!

I guess the only upsetting thing that day had been that he failed the hearing test but I will come to that in another post....

That Newborn Smell...

When I had Natalie I was only 17, it was 1989 and there was not as much written about how to bond and all the fluffy sweet stuff about having a baby. Everything was still very much practical information. I remember the night she was born cuddling her and the lovely the smell of her head, getting a giddy feeling when I smelt her. I remember very guiltily admitting this to a friend a while later and she admitted the same. Of course now, we all know about the newborn smell and how it appeals to us their mummy's and how it helps with the bonding etc.

As most of you know, Jules is my 5th baby but oh my gosh, the scent from him was so very strong, far stronger than any of my other children. It was animalistic almost. When I had cuddled him I could smell him all over, so very strong. Even with all the hand washing in NICU my hands constantly smelt of him, my clothes, my hair...everything. Even Roger said he could smell it so very strong on him when he got home. Am I silly that I kept one of his babygro's in a zip lock bag unwashed from that time? I have had the odd open of it and deep inhale and it takes me right back. I wonder if other mums who have had babies in NICU have noticed a different/stronger smell from their babies who did not need NICU?

By this time Jules was day 5/6. I had been trying to express for days and days. I was getting small amounts and that was fine for the first day or so when they were only giving him a few ml's per time to see how he tolerated it but soon he needed more. I remember my heart in my mouth when one of the nurses approached me and asked me if I had considered....and I was so scared for the next line because I worried she would say donated breast milk as this hospital ran a breast milk bank there whereby mothers with excess milk could donate it to the babies of mothers who were struggling. Now this is a personal choice as to if you ever choose to go down that route but personally for me I could not handle the idea of another woman's bodily fluids going into my baby. 

I personally do not sign up for the breast is best policy. I sign up for the whatever is best for mum and baby policy so it was with great relief that the nurse said have you considered formula milk because Julian is a large baby and he needs extra milk now as he is tolerating it so well.....phew...!! 

I think the way she said she was maybe used to mums saying no, I certainly saw relief in her face and body language when I told her I had Aptamil in my hospital bag ready as the hospital where he was born did not provide it and being a mum of larger babies the last of which wanted feeding 20 minutes after being put down constantly and I was hallucinating with tiredness I was prepared for another way.

Now I know that the whole breast is best versus formula is such a rugged topic but it is personal choice. I had been pumping every 3 hours and there was nothing there...I think the trauma of it all had totally caused something not to happen....even when Jules was able to wear clothes and I would take a worn item of his with me and I would inhale the smell of him...even when I stopped pumping I did not feel the milk there so much which was a shame as I had fully intended to be a real proper daisy the cow and feed Jules by expressed milk. I had researched it, and purchased all the equipment ready. One reason I had opted for expressing was because whenever I had breastfed my other children I could feel the energy draining out of me and would go into some kind of deep sleep...my ex husband found me slumped over Jennifer one day, thankfully he had only popped to the shops and was home quickly but I was totally out of it. Even more strange was that I was sat on the edge of the sofa in a fairly tense position as I was holding her under my arm. I decided by expressing if I fell asleep over a breast pump the baby was safe and Roger could also help take over....but then anyway when Jules was born so ill nature took over and I could not wait to feed him close to me but he had no reaction to me, we worried about his suck reflex and indeed from day 5-13 we were in hospital trying to get feeding sorted out for him as he had a weak suck, very lapse on one side and he could not tolerate large enough formula feeds to keep his blood sugars up so he would never have coped with getting enough breast milk in him and working at sucking on me and in fact we ended up resorting to using Infatrini, a higher calorie special prescription milk....it was the only thing that kept his sugars at a normal level and he could have the smaller volume feeds of this.

I can't even begin to tell you the stress this caused me. They kept trying to feed him by the bottle and he would get tired so they would then put the rest down his tube, then three hours later they would want me to wake him and try to feed him again but he was not hungry due to the large amounts they were putting down him. I think whilst the weight to feed ration is needed for teeny premature babies, using that formula on full term babies does not work. They wanted me to put 4 fl oz down him and I am sorry but no baby of mine has ever drunk that much at a week old.

The end result was he was constantly being sick, he was unhappy as he was so full and the minute you moved him he would be so badly sick. His little eyes looked so scared and I was petrified. I knew, call it mother's instinct that this was wrong and I felt no one listened to me, he was just not getting hungry because no sooner had he been sick they would fill him up again.

Jules totally stuffed full and not happy.

It was only when I totally broke down one morning when he had been sick again and they were trying to send me home and I felt there was no way I was leaving him when it was a silly feeding issue. In the end we had a mini conference with a head nurse and another nurse and agreed to feed on demand. It was only then when he woke for his feed and he did take more than he had ever had of his own accord but by checking his blood sugars we realised there was this issue and they agreed maybe is stomach could just not tolerate the large feeds versus what he needed to keep his sugars up that we changed to Infatrini and suddenly his sugars were fine.

During his time of trying to sort his feeding out he had his first bath. It was the Sunday so he was 11 days old. The nursery nurse was besides herself with excitement. It was Easter Sunday, we had dressed him up in a cute duck outfit for easter and I as very touched there was an easter card for him from all the staff by his bed that morning. The nurse was wondering how his hair would be after he had a hair wash. Jules had been born with approx 1 inch of dark hair all over...the money was on it going curly......

Jules the easter bunny xx

Jules asking has she done this before?

...and it went all fluffy and curly lol 

After Jules woke from his brain cooling....

I seem to recall the reaction was one of shock that he had woken up. It was one of lots of excitement from Daddy and myself for sure. I think we were both very excited that he seemed to be acting like a normal newborn...all blinky eyed and hello world.

I was so very worried if he went back to sleep he may never wake again. He was awake for about 20 minutes before he gradually drifted off again. He woke later on when I went up there and they told me he had woken a little bit and had cried like a little kitten mewing when they had moved him around. I remember hearing his first cry it was so very sweet...nothing like other newborns cries...it did get stronger over the next few days and soon became full force baby cry lol.

He had been through so much in the previous few days. He had been through blood transfusions and the full intensive care package. He had IV lines in his feet and his arms, he had blood taken and things done with his cord stump. It was never clamped with one of those plastic pegs. It had scissor clamps on it at first and then they sewed it up with what looked like darning thread. In fact he was about 4 weeks before his little cord stump fell off. I did not think it would ever come off. He has a little sticky out belly button now bless him.

I do not even know the emotions I had gone through those days of sitting by his incubator. I know I would quite often go up there in the middle of the night and sit with him and talk to him and beg him to come through all of this (before he woke and was still being cooled). I remember talking to him all about New York as daddy wanted to go there for his 40th birthday that coming October. I told him all about the big tall buildings he would see, how we would get there by flying high in the clouds on a big silver plane (American Airlines) and that we would go for a walk in Central Park and he could see all the trees. That we would go on a boat ride around Manhattan and go on the big yellow boat to Staten Island and go past Liberty. I also sung to him. I sung the Carpenter's 'Close to you'. I had sung it in hospital and it pacified my 3rd child Jordan when he had to have an operation and was treated for pyloric stenosis. I sung it to Jules too but normally ended up breaking down in tears. I made a deal that if he carried on doing well I would not sing him Donny Osmond songs lol.

Hormones...ahh hormones...what a terrible thing when your baby is so ill. I was all over the place. The minute they had heard that Jules had come off the ventilator I was whisked and removed from the Daffodil room. They gave me a single room on the post natal ward. It was hard as it was of course full of happy mum's with babies. I don't know if it was because I was from another hospital but the care was seriously lacking with hindsight. Don't get me wrong, on NICU they had lovely nurses (except some of the crazy foreign night ones). The midwives were lovely but they had no time, I had no advice on anything to do with the c section, no physio advice and I know they had someone coming round as I kind of gatecrashed one about a week later but she told me she was for first day advice so it was worthless to me by then. I didn't know they did not bring breakfast round either...no one had told me you had to hobble to the other end to get it yourself and the rest of the food was the absolute worse I have ever had the misfortune to experience in any hospital. It really was slop, who would serve up lasagne with mash potato? It all tasted the same. Even a ham and tomato sandwich tasted like toxic plastic. I was more or less a ward lodger and I just came and went and spent most of my time in NICU....they lacked comfy chairs and I think that not being able to relax really did not help my recovery from the C section. I was in constant pain.

On the Monday when he was 5 days old the most amazing thing happened...I got to cuddle Jules. I can not even begin to tell you how it felt apart from amazing!! The feeling of his weight on my chest was amazing, the smell of him was amazing, having him nuzzle into me was amazing. I cried and broke down...what else could I do? I felt like I had waited a lifetime for that cuddle...well I guess I had, Julian's lifetime! One of the nurses was taking photos and she just click clicked away, we have some lovely pictures of our first time together as a family.

                 

Click here for a video of Julian from his first day awake.