How Beautiful Is He?

Another good and uneventful day.

Yesterday E had a naso-gastric tube that had been taped right across his face. I was really worried about how they would take it off without hurting him. I asked everybody to make sure that if it was taken off while I was not there they were to use lots of solvent and be very gentle. This morning the tube had been replaced and his face was perfect (not one bit red) and the tube had been put in far more kindly.

M had a long chest hug today and E loved that almost as much as M did. My two boys!! I love them to bits.


Weigh Day

We expected E to lose a little weight as the drips had been providing him so much fluid and all his canulas had tissued meaning the fluid had gone into his tissues as it was too much for his kidneys to flush. He had lost indeed and his weight today is 1.725kgs – still brilliant.

He had a bath today as well and as always he loved that. He relaxes so much. Afterwards we dressed him in his vest, socks and hat. He was awake and really happy, just looking around with that beautiful contented face.

We had quite a good attempt at breastfeeding and he actually seemed to get something and was quite happy about the whole deal.

I now pick him up whenever he cries and he really likes that – me too. Gabrielle phoned me today (on her day off) to find out how he is – even "strangers" love him. Can't say I blame them!


Today I Felt Like A Mum

E is seeming to really respond to me . Today during his cares he became very upset and so when we were finished I held him to me and he settled immediately. I finally feel like I am his mother and I can reduce his stress. When he had his blood taken today he screamed (as you would) and I held his head and gave him his dummy and he calmed. The lady who takes his blood EVERY DAY is one of the kindest people I have ever met although I am sure that she thinks I hate her. I can understand how she thinks this - she approaches E's cot and I turn ashen and flee screaming, but really I just don't want E to associate me with all this pain. I feel quite safe in the belief that although the staff are all wonderful and kind - we will not take them home with us.

There has been a lot of talk about E getting a blood transfusion because he is so pale. His blood tests however show that his red blood cell count has gone up (a good thing) and are now at 10.5 from 9.9. We are hoping they continue to rise. Perhaps they should stop taking his blood every day and give him a chance to create some more!!!

All in all he is much better. He is now just on the growth plan – he needs to grow and get strong. He no longer needs the oxygen saturation monitor and is drip and canula free. All he has are his naso-gastric tube and heart and respiration monitors – he still has a few apneas which will hopefully cease as he matures.

Today he also had a good attempt at breastfeeding and also had his first hug with granny C.


Canulas and Retinopathy! Yugh

E tissues every canula that he has. Today I discovered that the canula in his hand had been transferred to his foot. Later that canula also tissued and needed to be replaced.

His stomach is so much better and today he finally pooed again. His stomach is soft and not distended and I am sure he is over his bug although he still looks very pale.

He had another bath today and loved that again. He really loves warmth. We weighed him and he weighs 1.795kgs. By next week I reckon he will be 2kg. His temperatures have been low since his bath but he is well snuggled and swaddled.

The ophthalmologist came to see him tonight and he has some retinopathy of prematurity – this means that the blood vessels around the retina have not developed properly yet – he will check it out again in two weeks but is pretty confident that it looks like it will not get worse and should get better. I was briefly shattered - I had thought he had the best eye sight in the ward! I am not googling retinopathy any further instead I am trying to take the confident and optimistic route. The test itself was hideous and I had to leave the ward. My poor little angel - how I wish I could take him with me. Seems unfair that I get to run away from the horrors that he is subjected to but, there is so much that I can handle and stuff in his eyes is more than I can handle.

He is definitely spending more time awake and is looking around so peacefully (I say looking around but the opthalmologist may not agree). The more I see him the more I love him, I can’t believe how much love I feel for him – it is quite an amazing feeling and at times can even blur the trauma we are going through. He even seems to love us at this early stage (and no, this is not because we are the only people who do not poke him and prod him, stick tubes in his nose and extract blood from his tiny feet).

His feeds were increased by 2ml every 6 hours today so he will be on full feeds tomorrow - this means the TPN can cease and all the canulas can come out. Thank the Lord! He looks so much better as a baby rather than a patient.


A Four Hour Cuddle

The highlight of my day was definitely my 4 hour cuddle with my wonderful, gorgeous, magnificent son. Highlight of my day? I mean highlight of my life! It was amazing to hold him for a whole four hours and see him so settled and at peace.

He is doing well – still full of canulas and the like although his antibiotics were ceased today. He is still on TPN until he is on full feeds and still needs his stimulant intravenously so the canulas must stay till for another three days.

The doctors, residents and fellows know I need to know every detail of E’s progress and I have become much a part of the morning routine – I never would have believed it but I really feel quite comfortable here.

I told E the story of his dad’s trip to Melbourne today and it became his favourite story although I must admit there is not much too it. We drive to the airport and I drop him at arrivals instead of departures and then he flies to Melbourne. Hey, E is still young and likes the sound of my voice so he'll take what he can get. I do try to be very expressive to get the true drama of the story across.


Clothes from Home

E now has a canula in his foot and his hand – one for the TPN and one for the antibiotics and “aminofalin” (sp) which is the stimulant that reminds him to breathe. Imagine that - a drug to remind you to breathe! Could take the party world by storm.

He is so much happier (more himself), he opens his eyes again and looks around. He is much better when I hold him and is certainly not so lethargic and “out of it”.

He could not have a bath today because of his canulas but Gabrielle, his favourite non family person, gave him a sponge bath with a hot towel – he absolutely loved it and relaxed completely. When he is well he has the best nature – so placid and warm. I love him to bits. When he is not well he still has the best nature but so listless and sad. It is those times that my love is soaked in tears. Who am I kidding? Lately I've been crying for no reason other than that E is in my life and I am stoked, scared and cannot wait to get him the hell home.

Surprise of a good nature this time. We weighed him tonight and he is 1.710kgs. We need to take into account his canulas etc but still it is fantastic to see his weight gain and he really looks like he has put on weight. You can see it on his face and arms and legs.

We put him in his own t-shirt after his bath – what a spunk! I know that this is not the best picture but you have to see his first time in clothes from home, right? Right


Keeping Him Warm

E’s colour looks so much better today although he is quite cool. His last 3 temperatures have been just under 36 degrees so he is very well wrapped – he has got a sock on the foot without the oxygen saturation monitor, he’s got his usual hat on, a vest instead of the usual cotton tops that he wears and even a jumper that looks like it could fit a Barbie doll.

He has had a quiet and settled day although he has had a couple of major screams. He particularly likes a hot blanket though and settles immediately once swaddled in that.

Dr C came to see him and started him back on feeds – 2ml 4 hourly. He is to stay on the antibiotics for another 48 hours. I feel much better knowing that he is getting so much better.


Softer, Flatter Stomach

Today I arrived to find that E had canulas in both his arms and so armboards on both his arms. Although this has no effect on his health at all, one provides his TPN while the other provides his antibiotics, it upset me so much to see him like this again.

He is getting better according to all the staff but M and I can see that he is definitely less alert and looks quite pale. He is very hungry though which I guess is a good sign. I keep reading articles about the stresses on babies in care and I worry so much about him. He does get so stressed when we unwrap him or when we change him. Lately he even stresses when we hold him. I just love him so much and I want him to feel well loved and secure. I don’t want him to feel scared and stressed.

On weekends when M can sit here with all of us it is so much easier. M makes me laugh and we talk next to E's bed like "normal parents. I am sure that E can feel the positive vibrations. Hopefully he can feel our love for him and some relief from the stress of being born to the world when you are just not ready to face it. M and I have certainly faced some stress during the last couple of weeks and it is not as if we have not had a few angry and emotional words thrown between the two of us but when we are next to E.... well sometimes for ages on end we can behave like adults for him. God - he is a good influence.

The surgeon came to see him again and is really happy with his tummy. It is much flatter and is nice and soft. His blood cultures have come back and there is no sign of bacterial infection.

He continues on the antibiotics and TPN.


Still No Food

Today I arrived to find E back in his cot. Apparently he had been very unsettled during the night (as I feared he would be) uncovered in his humidicrib. God I hate that he was unsettled and I was at home!!! His stomach looked much better. Last night it had been measured at 28.5cm and this morning it was 23.5cm. His weight has dropped, not surprisingly and he is now 1.510kgs.

The poor little man sucks furiously on his dummy. I can hear him from quite a distance. I am sure he is very hungry but at least I know his sucking reflex is well developed.

He had another x-ray today which shows an improvement although the bowels are still slightly dilated. John, the neonatal fellow told me about the horrors of NEC, how it can be fast and fatal (Dr C had only told me that sometimes in severe cases some of the bowel had to be removed). Dr C’s notes say “Treat as NEC, but probably not”. E will have to stay off feeds for another wo days and is going back on TPN. This in itself is stlightly devestating as really all we need to do is try and get him on full feeds so that he gains weight and come home.
The fact that he is on triple antibiotics is also causing some ripples in the extended family - ripples that I could well do without. I am trusting the medical staff fully and if they say triple anti-biotics I am going with that rather than the floral and herbal suggestions thrown at me from concerned family members. Funny that - I belive modern medicine may be a lot more productive than the bark of a tree!

E is still very quiet although when he does complain he gets great comfort from his dummy.


Today was a Nightmare

What a nightmare of a day! E is not at all well. This morning he made a poo eventually but his stomach was very distended. The long and short of it was that they did an x-ray and he has an obstruction in his bowel.

I felt like my world was falling apart when they put him on a drip, stopped his feeds and put him back into his humidicrib. Dr C explained that it was probably an infection. He told us about a disease called Necrotising Enter Colitis (NEC) that is the “premature baby infection” that he warned us about in Level 3. Basically the loops of his bowel were very dilated. The surgeon and his resident both saw E and thought it might be NEC. Another surgeon who saw him later in the day thought it was not bad enough to warrant surgery – one good thing!

Everyone was very concerned and kept stressing the seriousness of the condition. In myself I felt that he was feeling better than the day before. He was very lethargic but he somehow seemed happier to me and he made 4 large poos. I thought this was a really good sign.

By the evening his colour had improved and I felt that he was on the road to full recovery. He is on a drip – three antibiotics, saline and sugar. He has also had his oxygen saturation monitor replaced as his huge distended belly could push up on his diaphragm and make it hard to breathe.
I am finding it hard to breathe. I cannot believe this is the life we are leading. I cannot sleep, I cannot eat and I cannot function rationally. If there were a drought I am safe in my knowledge that my tears would break it


Not Feeling Flash

The morning started out so well. We weighed E and much to my astonishment – in fact I still don’t believe it, he has put on 108grams in 2 days bringing him to a grand total of 1.579kgs.

I bathed E almost unassisted (sounds like I’m the one making the progress) and again he loved his bath. He didn’t sleep through this one but he liked it nonetheless and was very calm.

The rest of the day was not so joyous. I am sure that the HMF (Human Millk Fortifier) that they have added to my breastmilk (via the tube feed) has made him constipated. I held him twice today and both times he screamed. He screws up his face like his tummy is really sore. It really distresses me to see him so upset. Also twice today his heart rate dropped and he needed to be prodded into action. He has also not opened his bowels since 9am this morning.

All in all not a good day coupled with the fact that I spoke to the surgeon about his upcoming hernia operation and circumcision and I am so scared for him.

We did not attend his 9pm cares as we went out for our 10th wedding anniversary. How times have changed. I worried about E all night, the doctors say I am stressing but he just does not look happy to me. I cried for much of the night. My husband is one patient man


A Calm and Uneventful Day

This little boy of ours is just so wonderful. More and more I look at him and love him more. He is looking so cute with a real baby face that has filled out and he is just so perfect and magnificent. Today one of his old nurses from Level 3, Joanna, came to look at his photos and asked if she could have one. I was very flattered that with all the babies she looks after she wanted a picture of E (not that I blamer her mind you).

We had an uneventful day – just lay around doing much of the same. The doctors have decided to add Human Milk Fortifier to his feeds so that he puts on extra calories.

We had another attempt at breastfeeding but I don’t think he is ready for it yet. It will happen when it is meant to.


First Bath

What an angel – so happy and contented. E loved his first bath (after the initial shock of getting in). He was so relaxed and calm that he fell asleep. He really seemed so happy even after his bath. When he was dried and had his clothes back on he seemed so happy. I just reread this paragraph and I think we can safely assume that he was happy. By the way in case you think I am brave and those are my hands in the photo I am not and nor are they. Those are the hands of the nurse Gabrielle who gave E his first bath.

The sweet pie (E not Gabrielle) has also put on a whopping 50g – he now weighs 1.410kgs.

We are continuing to try E on the breast. So far he is playing a bit but not really sucking. Nevertheless I just love holding him next to me.

Dr C told me that E could be transferred to the Prince of Wales Private . I am neither happy nor impressed. We are so settled and comfortable here, we know all the people and what is more important – they know E and really seem to care about him. Even the nurses not looking after him come to check him out and say hi and lavish him with praise.


Active and Alert, Handsome and Intelligent

This morning I arrived to find E completely buried in his blankets. His whole head was covered and I freaked a little (ok a lot) – I know that he is monitored but I really don’t want him to be so covered that he feels like he can’t breathe. I asked his nurse for that shift, to please not allow that to happen again. I know she won’t listen (thinks I’m neurotic) but next shift is Gabrielle and she is so in love with E that she wont allow anything “bad” to happen to him.

We put E on my breast again and he had one or two sucks. He sucks far better on the dummy but I am sure that we’ll get there. The sucking reflex is only learned at 34-35 weeks and he is only technically 33 weeks and 4 days.

When E is awake he is so alert and active. All his nurse notes comment on this. Yesterday one of the nurses gave him some black and white patterns to stick on the side of his cot. He looks at these patterns and is so aware of everything. He really seems to be a happy baby (and so intelligent and handsome).

At one time during the day the hernia was looking a bit better but unfortunately it is quite big again – still not causing him any distress.

Good news again. E is now on three hourly feeds and cares – a big step forward. Level 1 babies are on three hourly feeds and level 1 babies are getting ready to go home!! He is now tolerating 29ml every three hours and three hourly cares mean we get to cuddle more often. He has also moved to two cuddles a day.

Cuddled with M again – just a short one but he does so love his daddy’s hairy chest and melodic singing voice. In fact when I hold him he looks for chest hair (Thank God he doesn’t find any) and seems quite annoyed that all I have is these annoying nipples which I keep forcing into his mouth.


Cuddle and Cuddle and Cuddle (let's not think about surgery)

Today I arrived at the hospital and I read in E's notes that they had discovered a hernia on his right side. It was explained to us by the nurse, and later Dr C, that it is quite common in premature boys but it may require surgery. It will be reviewed before he leaves hospital and if he requires surgery it will be performed at the same time as his circumcision. The thought of my baby in surgery sickens me. The circumcision is something that conflicts me totally. I know my child must be circumcised as is his Jewish rite but the thought of the pain apalls me. I am not thinking about it right now nor am I thinking about the need for surgery for the hernia. Instead I am going to think about cuddling him.

This morning we tried E on the breast again and I can safely say it was one of the most wonderful things that has ever happened to me when my little angel sucked. It feels so right to be looking after him like that – to be doing some real mothering. After I “fed” and held him M had a cuddle. We can’t wait to bring him home and cuddle him and cuddle him and cuddle him.


A Good News Day

What a wonderful day! Life can only get better for my sweet man and it does - continually.

This morning E’s nurse Tara gave me all his good news. The little champion is maintaining his own body temperature and has now moved to an ordinary crib. He is tightly swaddled and covered in warm blankets and so settled and happy. He does occasionally go a bit red in the face and cry but he settles without any intervention. I am proud to say that I am also managing to handle my frequent tears with less intervention although I would not mind some hard drugs. We had to take home his big fluffy dog that was keeping him company as his crib is too small for the two of them. We put a smaller dog, Sally in and also a photo of M and I - just so that he doesn't forget who we are. My only hope now is that he does not confuse us with the fluffy dog (M is quite fluffy and NO I am not a dog)

His other good news is that we are going to slowly start introducing him to my breast. He may not drink from it but he will get used to it and we can bond some more. Any more bonding and we may need wallpaper stripper to pry us apart but I am happy to chance it.

Third big step for the day – E will have his first bath in two days providing he continues to maintain his own body temperature.


My Kingdom for a Sheet

The whole morning has been horribly unsettled and I have been crying almost as much as E. He has been vomiting and crying quite hysterically and he does not settle as quickly as he usually does. His nurse this morning, Claire, eventually put a sheet over him and he is so much happier. Later still, after his cares we wrapped him and he is rapped with that. He looks so calm and peaceful and for the time being the crying has stopped.

This afternoon during our cuddle E seemed to be really alert and hungry. He opened his mouth as if looking for food and when I gave him a dummy with milk on it he sucked vigorously and happily. Is it insane to be so proud of your child? I am sure that soon he will be able to start breast feeding.


29.5cm Head Circumference - Must be Brainy

E has put on another 35grams and now weighs 1.340kg. His head circumference is 29.5 a whopping 2cm larger than at birth.

He has a few unsettled times – mainly late afternoon where he cries and screams and I start to sweat and cry myself. I try very hard not to scream lest I get carted away. It is the hardest thing that I have ever had to do to watch my little boy in distress.

Today we had an almost two hour long cuddle courtesy of his nurse Angela who is the same nurse who looked after me in acute care after he was born. I really can’t wait to cuddle him whenever I like or rather whenever he likes. Actually whenever I like.

I had difficulty leaving E tonight as he had been so unsettled. When I phoned to check in the middle of the night he was settled and fast asleep. I felt much better, but still did not sleep. Being apart from your own baby is torture.


Mother Throws Tantrums, as you do

This morning I had yet another tantrum on behalf of my son. I arrived at the hospital to find that the overnight staff had turned off his oxygen saturation monitor. They had not disconnected him, just turned the monitor off. I was livid as I did not believe it was time to do this after all he had a desaturation requiring stimulation only yesterday. I spoke to the registrar and the nursing unit manager and it was switched back on. I also spoke to Dr C who agreed with me and told me that I could be as “painful” as I like. Not that I need an excuse really but it does sound so official coming from a doctor - almost like a prescription "you must be painful to the staff in order to get what you want".

I am sure the registrar on duty regrets having met me. After causing a huge fuss about the monitor he is rather nervous of me. Yesterday I clashed with him regarding feeds and so today when he approached me about the feeds again I could see the fear in his eyes. It was warranted. I thought he was increasing the feeds to fast – 1ml every 2nd feed (4 hours). When I came back after rest time he informed me that they are staying on 18ml every two hours for today and only going up tomorrow. No wonder I am so confused.

E had his oral-gastric tube changed to a naso-gastric tube and he hated that procedure. We can now see his mouth and chin properly and he looks gorgeous. His mouth is just like M’s only much much smaller and obviously a bit cuter. The nurse says he has a “strong character”. I know what that means - he is difficult, much like his mother.

I sit and I watch this precious baby all day and I cannot believe how much love I feel for him. He does not seem to sleep that much but even when he is awake he seems very content. It is only when you interfere with him that he gets upset. He does however love having his head touched and his feet stroked.


Hospital Notes

Today I read E’s hospital notes and they almost say more about my state than his. Obviously I have been far too worried about my baby. I wish I could be different but I just want him to be bigger/better and at home. I wonder if they know I am reading the notes. I am tempted to add to them saying how handsome and clever E is. Nah, my writing is too neat, they will know it's not from the doctor although I am sure that they will agree with the sentiment.

We had along kangaroo cuddle today and as always that is just heavenly. It feels so good to hold my baby, so natural and so right – I wish I could do it all the time.

He had another little “posset” today and just before that he seemed most distressed and angry. I guess I would be too if I was just about to throw up, nonetheless it freaks me to see him cry.

A pregnant friend of mine came to see E today. It is weird to imagine that she has a baby E’s size in her tummy and even odder to think that we should be having our babies at the same time and in fact I have already been a mom for two weeks. Older - yes, more experienced - maybe, calmer - no.


Exhausted. Absolutely Exhausted

It seems that I have a while to go before I can settle as easily as my young man.

Today E did another big vomit through his nose and mouth. He settled quicker than yesterday but still every little bit of distress makes me nervous at the moment. I just don’t want him to feel lonely or abandoned or in pain or upset, it feels so unnatural not to cuddle him or comfort him physically when he cries.

He also had his long line out today. A long is a special long lasting IV line that goes through a vein directly to the heart. It is the line which provided his Total Parent Nutrition (TPN). He no longer needs the TPN because he is on full feeds at 15ml every two hours.

M got another long “skin to skin” today. It is amazing how his voice soothes E. The nurse on duty said that we should be aware of this and use it to soothe E when he gets home. I think it may have been a very nice way of her telling us that M's voice is boring.

I was exhausted tonight and could not express much milk at all so I decided to go to the hospital in the middle of the night to see E and use the electric pump. I did not manage to express a thing and then came out to find that he had vomited again and he was just lying there in the vomit. He also looked very pale and I was distraught. His feet felt cold and he was uncovered and listless. The nurse on duty and I did not hit it off. I was furious that he was lying in his own vomit and I think she was furious that I was there after midnight telling her how to do her job. We changed him and I got to hold him while we changed his linen.
He soon settled but I felt like a zombie – no milk, no sleep and way too much stress. Even the fact that someone else was going to clean the linen didn't cheer me up. The doctor said that they monitor the babies carefully for 24 hours after the long line is removed as often there are “bugs” on the line and the baby may need to work hard to fight the bugs.
I am desperately worried about my listless baby and I am nauseous with exhaustion.


Acidic Vomit is Not a Good Title (nor is it a good thing to have)

At two weeks old E can reduce his dad to a pool of sweat.

I spent the morning with E who was crying when I arrived (and consequently so was I). He settled quickly, due in part to my brilliant settling techniques, that and the fact that I probably walked in at the tail end of his sobbing session. God I hate not being with him all the time. Anyway he seemed to be his normal content self until his 12 o’clock cares which M attended to by himself. E vomited a huge acidic vomit out of his mouth and nose. He desaturated badly after screaming through this acidic upheaval and becoming tangled in his leads. He needed additional oxygen to get through the whole ordeal. No oxygen was offered to M although I believe he needed it. We certainly need to learn to deal with theses stresses more effectively.

The rest of the day E was settled and he certainly made up for his horrible morning by having a long cuddle with M. M got to pouch him skin to skin and it made me so happy to see it that I managed to express by biggest amount yet. Let it be known that this is still not a big amount. I have become a cow that spends half her life attached to the end of a pump. If I were a real dairy cow I would be made into steak.

E is now on 13ml every two hours.


1.3kgs - What a Whopper

I arrived at the hospital this morning to find that they had to supplement my breast milk as I had not left enough for the whole night. I was briefly devastated – then I discovered that E had put on 100 grams. He now weighs a whopping 1.3kgs. He has well and truly overtaken his birth weight and is doing so well. If he continues to put on weight at this rate he’ll be a huge fatty in no time.

Dr C came to see me, he is really happy with E and says he is going exactly according to schedule. He reassured me again that E would not remember or be affected by any of this trauma.
E does seem so content now – he sleeps most of the time or lies very quietly with his eyes open like he is just checking the world out. He makes windy faces that look just like a smile and I laugh every time, he looks so hysterically cute. The only thing he really hates is having his nappy changed, he cries and gets himself into a state. This is the only time that his oxygen seems to desaturate although his chart says he has had a couple of apnoeas. I am tending to distrust the chart and trust my baby instead.


We Move to Level Two

E is magnificent.

The results of his routine brain scan came back and everything is normal. 12: 05pm - The doctor has just told me that E is a Level 2 baby. Yahoo! Our baby will move to Level 2 this afternoon. This is a huge step forward and one tiny step closer to home.

We finished reading our first book – Winnie the Pooh.

E is now in Level 2. I am still getting used to the place. It is very noisy. There are lots of alarms and crying babies. It makes you realise how sick the babies in level 3 are - not much crying from babies that are attached to ventilators, so although I absolutely abhor the sound of crying babies I know that this is a healthier environment. Let me stress at this time that it is not that I have anything against crying babies, it is just that I so badly want to comfort anyone that cries, it is like my maternal instinct kicks into overdrive and I rush into placate mode. Cry near me and I am likely to pat you and soothe you. That is just me.

This afternoon E did not saturate well lying on his back. On his tummy however, he is perfect. I am already known on the ward as a neurotic. I don’t like to think of it as neurotic, I prefer to say I just care very deeply about my child in a way that may be deemed overkill by people who fail to see that I am right.

Dr C phoned this afternoon to say congratulations on E's graduation to Level 2. I am very proud of him. I am also so very proud of E.

M and I are not spending a lot of time at home. We prefer to be near our offspring (funny that) but when we are at home we are putting all our energy into getting things ready for our man’s homecoming. We are exhausted and stressed. There have been some really bad days, we have been hugely emotional and stressed, exhausted and overwhelmed but thank God we can take that stress out on putting up wallpaper strips and assembling cots. God knows I'd like to use the hammer some other way but knocking nails in the cot is a good diversion. Neither of us has ever had to deal with anything like this before and so while we both face our fears and acknowledge our frailties we try and support each other (and not strangle each other with the pretty wallpaper border). We are lucky to have the love and strength that we share.

My milk supply is abysmal


A Humidicrib For My Boy that Breathes On His Own

This morning I arrived at the hospital to find E still breathing on his own. He has been breathing on his own with no oxygen assistance for almost 24 hours!!! And to think that just under two weeks ago I thought it was taken as a given that babies breathe on their own. Clearly I have much to learn

On this morning’s ward round it was decided that E should be moved to a humidicrib and there is a possibility that he might be moved to Level 2. I am overflowing with joy.

He is still alert and looking around. Now I worry that he won't sleep enough. I am really looking forward to this roller coaster ride that is parenthood.

My milk supply is starting to improve ever so slightly as I come off the blood pressure medication and I start to relax and get used to this hospital environment, also I am sure that it is related to the excellent progress that E is making.

E is now in his humidicrib and although I am sure that he is too hot, he seems very happy. The humidicrib regulates his temperature so he does not have to work on heating himself. We have to do his cares (nappy changes) etc through the “porthole” but today I got the chance to cuddle him under my top. I am aware that he can't lead a full, happy and productive life under my top but this just feels like it is where he belongs. I love him more and more all the time.

Feeds are increasing – he is now on 6ml every 2 hours – my son the glutton.


Day 11 - A Day of Firsts

Today M got his first cuddle and all through it E breathed unassisted. He still has a tube in his mouth and I am sure it is tickling his throat as he keeps opening his mouth up wide as if his throat is sore. Perhaps he is just trying to say that he loves us (trying so hard to be optimistic). The cuddle with M went so well that when they put E back down in his cot they left the c-pap off and our precious boy now breathes on his own.

He is so much happier and is definitely more awake to the world. This afternoon when we sat together he had both eyes open for about 15 minutes. He makes faces as if he is smiling and he really seems to be taking in his world. I cannot believe he should still be inside me – he seems so ready to be alive today. He is also on 4ml of breast milk fed through a tube every 2 hours so he should start to gain weight soon. Could do with a bit of weight gain, he is sitting on 1.18kgs today and although it does make carrying him seem so effortless it doesn't do wonders for his strength.

Today’s firsts:
First vomit
First time in dad’s arms (not related to the vomit)
First time both eyes open for his parents
First family photo


Day Ten - Another Cuddle

Still breathing with the aid of the c-pap. E loves to be tightly swaddled and gets most upset when we change his nappy.

Today we had our second cuddle. I held him for about 15 minutes and he slept peacefully and calmly. He is still attached to a thousand wires and machines so the cuddle is pretty close to the cot. I cannot wait to take him away from the trauma of the hospital and to a peaceful, calm home filled with happiness, love, health and laughter.

All the nursing staff tell us how uncomfortable the c-pap is and half the time when it falls out I don’t want to replace it. I never want E to associate me or my voice with any trauma or upheaval.


Day Nine - C-Pap Freaks Mum Out

Arrived at the hospital today to find E on c-pap. Small prongs inserted into his nostrils to give him air. I freaked out. I freaked out because he obviously needed more oxygen and I freaked out because I had not been there when he did. I also freaked out because freaking out was becoming the way I dealt with things. Before E had entered my life I had been calm and only really freaked out in particularly bad traffic or when someone was particularly stupid - ok so I freaked out a lot before E was born. But this was different, I was feeling such a lack of control. My baby needed things that I could not provide for him and other people could - they knew what he needed and I only knew how to love him.

When he cries I become distraught. I wish that there was a way that I could take the discomfort away from him. He settles really well when we place our hands firmly on his head and bottom or feet but I worry about the times that we are not there and on days like today when he just does not seem happy I feel like I just want to run away from the horror of the situation and take him with me.


Day Eight - Making Huge Strides

It was bound to happen. E was surely going to have another "best day of his life". Today was it .

At about 11am they took away the photo therapy lights and wrapped him in a warm blanket, they put a little top on him and he just loved the warmth and security of his new surroundings. At long last we can wrap our little angel up.

E is also breathing really well. He is hardly using the ventilator and breathing real air so today he was taken off the ventilator. He is GORGEOUS. They took the bandages that were holding the ventilator in place off his face and this was the first time we got to see him properly – he is just so perfect. A little while off the ventilator and he needed an oxygen box but all the doctors and nurses are really pleased with him. He is a real soldier. No cuddles though because he is using all his energy to breathe and can't waste that energy cuddling.

He definitely loves to sleep on his tummy.


Day Seven - Foray into Modelling

E is more active today. While this could be considered a good thing in normal circumstances it is rather distressing for his parents who do not know the difference between active and distressed. This "active" looks decidedly distressed. The nursing staff assure us that “all babies cry”. Um, yeah we know that. It's just that normally when babies cry their parents can pick them up and comfort them. I want to hold my baby so badly but all I can do is watch and sing to him, read to him and cry.

On the up side E managed to procure his first modelling shoot today. His doctor has developed a new phototherapy light eye mask, he has designed this itsy bitsy teen weeny (not polka dot) eye mask with an admittedly cute pair of sunglasses drawn on the outside. This is just a prototype and E is trialling it. He seems comfortable and looks like a super model (and I don't say this just because he has absolutely no body fat).

E is breathing above vent rate and everybody is happy with his progress. When I say everybody - I mean everybody in the medical field. We would like to fast forward 2 months.

Tonight we were forced to go and have dinner with the family. It was not the highlight of my day. I like to stay next to E's cot and sing and stare at him. We came to see him after dinner and he was fantastic, settled and calm. I would like to think it was not the fact that he had no-one droning on in his ear that allowed him to feel so settled. He is loving sleeping on his tummy and I feel not an inch of guilt about this. He is hooked up to so many monitors and has his own nurse dedicated to looking after him - there is no chance that he will stop breathing in this safe environment.


Day Six - The Cuddle

The photo therapy lights are still on and everybody tells me that he will be much happier when they are off and his body does not have to be so exposed. I wish that I did not have to hear that he will be much happier when... Can't he just be happy now? The poor little angel has no comfort around him other than the sound of our droning voices. I am reading him Winnie the Pooh, M is reading him The Economist - tell you much about ourselves? (In M's defence it is just the sound of our voices that is important - even if The Economist threatens to bore some of the nursing staff into a coma)

E is tolerating his cares and his feeds and is breathing above vent rate. He dribbles a lot and there are constant secretions in his mouth. He is more active today.

Okay - saving the best for last. Today was possibly the best day of E's very short life so far, not that there is much to compare it to but, today for 10 whole minutes he got to spend time where he belongs - with me.

Ta Da - I got to have my first cuddle with my son today. The amazing nursing staff swaddled him up, bundled all his wires together and handed me my baby. Can I explain what it is like to hold your baby for the first time when he is five days old? No I can't. I was petrified (yup - he was tiny and he was attached to a LOT of machinery), I was overjoyed, I was falling deeper in love and I was crying, laughing and sobbing at the same time. He was so content in my arms and even though there was more machinery than baby visible I just wanted to run away with him. I wanted him to stay in my arms far away from this clinical environment and I wanted to kiss him and touch him and tell him how much I love him. I managed to do the telling but still no kissing or touching because he loses to much oxygen (and that has nothing at all to do with the potency of my cuddles). I certainly did not manage to run away with him because boy that machinery is heavy stuff. That first cuddle will stay with me forever but vanity prevents me from posting the picture - put it this way, I cried a LOT.

I am 100% fully, wholly and undeniably in love. We are limited to one 10-minute cuddle a day as this is all he can handle. Living for the next one.