Daddy's turn

Sorry for no blog yesterday.... I just ran out of time and fell into bed as soon as we got home. We had a lot of visitors yesterday and daddy got his first cuddle!

We were so excited when the answer was 'yes' to our 'can daddy have his cuddle today?' question. We drove home for a shower and headed back clean, fresh, excited and more than ready. Phil had a kangaroo cuddle that lasted around 2 hours. The time just flies by too! Think he was a bit nervous at first, but looked very comfortable with him after that, and Jensen very much enjoyed snuggling on his daddy.

The cuddle was planned for Sunday, but as they were planning on making a lot of changes with Jensen's ventilation perhaps Sunday wouldn't happen. As it turns out Jensen is having another blood and platelet transfusion today and had a busy night with the nurses. They had to change his tube again as he was having a lot of secretions, and this change has caused his ventilation to go up. They had dropped it down yesterday from 60 supported breaths to just 40 out of the 60 breaths being supported by the machine. They are trying to mimic CPAP for him and prepare him for the change. There may be some delay due to the change of the tube last night, but hopefully he'll 'come to the party' as Dr Mary says.

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27/2/15

Not much to report on today, which is nice, Jensen has had a nice quiet day.

His milk feeds have been increased to 20 ml per kg, so having 1 1/2 ml two hourly. He has started back on his probiotics today too, so that will help sort his tummy and help with all the antibiotics he's been having.

This place has been a little better to be in today, not as much going on and not as many crying mothers about. A few new arrivals, with upset parents. I feel like chatting to them and giving them some hope, but I remember how we were when we first got here and know they probably don't want to chat, which is totally understandable. People here don't want to chat about their circumstance, I know I don't...only to a select few. So it's best to not ask questions and mainly keep to yourself.

Poor little Jensen has been trying to suck his thumb throughout the day, and because he has a splint on one hand and his oxygen probe on the other he is unable to get his fingers near his little mouth. His fingernails have grown very long too, but they are only paper thin and he won't be able to scratch himself with his marvellous talons.

He was won many hearts here in the NICU, with many nurses doting on him and commenting on his good looks, cuteness, and how big and fat he's getting... Just love him to pieces I do. He's the most beautiful thing I've seen ever (besides his daddy of course).

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One month

At 11:44pm it will be a month since Jensen's hasty arrival. He's come so far in that time, and is such a little trooper. Still a very long road ahead of us all, but we are getting there gradually. He's such a beautiful little superstar with so so much love surrounding him.

Today Jensen started his course of steroids to help him get off the ventilator. He's also increased his milk to one ml two hourly and is doing well with digesting it. He has grown in length from 30.3cms at birth to 36cms. His weight this morning was 1126g, although this is a large weight gain, it is mainly due to fluid and the new blood he got last night. Apparently he may continue to weigh more while he's on steroids, but the doctors have agreed that the pros far outweigh the cons with the steroids. He also had his follow up head scan today at 28 days and his next one won't be until he is discharged.

There have been a lot of crying mothers around today with some very sick babies, so we decided to head home a little early today for dinner. The NICU hasn't been a very nice environment today and I have had to take many walks outside to get away from all the goings on with other babies...it's just such a sad sad place for some.

Thanks Aunty Gemma for my cute new attire, I will be wearing the hat for daddy's cuddle

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28 weeks

Today Jensen is 28 weeks, which means 12 weeks until his due date! Still sounds like ages away, but at least it's closer than 17 weeks and we are a quarter of the way through.

Today Jensen's CO2 levels were a bit high again so he has been placed back on high frequency ventilation for a while. He has had another blood and platelet transfusion today. The doctors are trying to work out why his platelet level keeps dropping. It could be because of infection, but he is not presenting any signs in his bloods. They take some of his blood and let it dry out over 48 hours. In this time if there is an infection it will grow on the sample. None of this has happened with Jensen's blood sample. They have sent away some of my milk to test that, and I am hoping with all might that it's fine. He has been tolerating his milk well and is being kept at one ml four hourly for now. They are going slowly with this so not to upset his tummy again. His duct has reopened a little, and they are looking at giving him steroids to help him get off the ventilator, and which in turn may help close the duct.

This place is not always an enjoyable place to spend a day. There are the mums and the dads, some happy, some sad, some with blank faces. Some that like to chat, others that don't. Constant comparisons between babies, breast milk, and coping strategies. Nurses and doctors all around, some in scrubs, those that move in packs. Medical terminology flying around, precious ears trying not to listen. The constant beep and alarms of machinery. Downstairs, new mums taking their healthy full-term babies home from the maternity ward. Pregnant women all around. Injured and unwell patients escaping the ward air in need of some that's fresh. Sometimes this place is just shit. Sometimes a day takes a week to go by. But I know this place is the best place on Earth for our son, and I am thankful for all the care he gets, from such a well-equipped, well-run unit. And for that reason, and to support our tough little soldier, I will stay by his side each and everyday, until the day comes when we can finally take him home.

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The big weigh in

Jensen weighs a kilo! In fact, he weighed in overnight at 1003grams, so mummy has to get busy baking the celebratory kilo cake... I was so excited this morning I went around and informed all the other nurses of Jensen's heavy little self.

He has also started back on milk today. One ml every 4 hours by tube for now, so hopefully his tummy is all better now and will tolerate the milk well. The doctors have also cleared him of all infections, all tests have come back negative which means the infection in his bowel, umbilical area, and lung have gone. He has now ceased all antibiotics and should be ready for some steroids to help his duct close and to help him get off the ventilator and make the gradual progression to CPAP. While the infections were present they can't administer steroids as the steroids mask the infections. In total Jensen had six infections present within his little body. Boy what a tough strong little fighter we have.

Jensen's newest editions

Jensen's had quite a restful day today, not much poking and prodding, and lots of mummy just staring at him. All the nurses comment on what a handsome little chap he is, with his cute little face....seems as though mummy and daddy aren't so biased after all..

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4 weeks old

Today little man is 4 weeks old....another little milestone for him. It seems that these 4 weeks caught up with us this morning with both Phil and I struggling to get out of bed (more so than usual), but at the same time we are both feeling less stressed out and a little more relaxed. Perhaps it's because Jensen is now 4 weeks old, or that we had cuddles yesterday, which is a good sign of him being stable enough for these little progressions.

Speaking of cuddles, Phil was hoping for his cuddle this afternoon, but Jensen had a busy day today with some X-rays and the repositioning of his Tracheal tube, and his oxygen saturation has been swinging because of all of the handling, so today was not a good day for cuddles. The babies benefit enormously from kangaroo cuddles, but at the moment with all of his attachments and tubes it can be quite an ordeal getting him in and out of his little house. Hopefully it won't be too much longer for daddy.

The X-rays showed Jensen's bowels to be looking normal again after his infection, and his lungs look to be clearing that infection also. On top of this, the presence of candida in his body appears to have gone. This all means that he will stop antibiotics for these tomorrow and possibly start up again with his milk feeds.

Tonight is the big weigh in! We are hoping to hear in the morning that our little man weighs a kilogram. I was asked by the nurses if I had heard of the kilo cake, and was informed that mum needs to bake a cake to celebrate the kilo mark. Lucky I am an avid baker, and can happily comply to this request, although I haven't even looked at my oven since baking lamingtons on Australia Day (which ended up mouldy and uneaten due to the events of that day) but I have got all the ingredients ready to go tomorrow afternoon should we hear the news we are after.....We will be extremely disappointed should the little fella weigh in at 999grams...

I do believe the little man cracked a little smile this morning.....in between the million yawns he seems to do...just like his Mummy and daddy at the moment!

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Cuddle day!

I walked in to Jensen's room this morning to hear the nurses unaware say "but daddy is playing golf today". I startled them by saying 'yes he is'. Then the realisation hit...."am I getting cuddles today??". The answer was yes!! Still to be cleared with the doctors upon morning rounds so I didn't get my hopes up too soon, as that carrot has been dangled in this donkey's face a few times now. Nurses ask Doc, Doc says yes!, Phil was at golf....damn it! Text daddy....what's the earliest I can pick you up?? No post round beers today, quick shower and back for cuddles, Jensen's was moving house today.

So as previously mentioned the crib needs to be changed, cleaned etc after an amount of time. Each nurse has different perspectives on things and last week's 'no we don't do that anymore' has become a 'yes we are changing his crib today'. No real changes in accommodation for the little fella, just moving from a Mercedes to a Holden essentially. The only thing this crib doesn't have is a movable lid, and now, as Jensen is no longer the smallest chap in ICU, this humidicrib is now free for the fresh little ones.

We couldn't get back to the hospital quick enough....One day short of 4 weeks is a long time to wait to hold your first born little baby....mummys always get to go first, but it will be daddy's turn next. Only one cuddle per day is allowed and only with one person, and during this time the nurses like it to be mummy, daddy and baby time. Plus they are conscious of visitors breathing and getting too close to the little ones. The cuddles last for up to 3 hours depending on baby, and whether mummy's bladder, back and boobs last that long. Today's cuddle was around 2 1/2 hours....and gosh it flew by! I could have kept going, and Jensen seemed very content snuggled amongst my big milky airbags. The cuddles need to be substantial as it is quite a process to get them out, especially with all the tubes and tangles Jensen has. He responded very well and hopefully that means this can become a regular occurrence.. I can still smell his little scent and not sure I want to wash it off. I've kept the muslin wrapped over him during cuddles to remind me of his scent and help promote my milk production. Phil had a little sniff and a few little kisses and hand holds during snuggle time, and can't wait for his turn!

In other good news, the little chap weighed in at 977g...almost a kilogram! His head circumference has also gone from 22.7 to 23.8cms, and his tummy has returned to normal...just a little fluid around his neck and groin.

A little mirror used to see his face during cuddles

There are a million others but these should keep you satisfied until next time. What a fabulous little day we've all had..oh yes, and Phil came 6th at golf :)

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It's the weekend..

Jensen has been a very good boy today. The nurses have stretched the taping on his tracheal tube rather than repositioning it. He appears to not like being on his left side, I think with tube position he starts grabbing it and moving his head a lot which is not great when everyone is trying to keep the tube in place. He is a much happier little man on his back or right side, or even on his tummy.

The nurse with him last night said he was sucking his thumb through the night. He kept trying to get his hand in his mouth and when it was near started to suck, so she helped him by placing his thumb close enough for him to latch on to. What a cute little thing he is. Looks like there may be lots of orthodontic bills to come if he remains a thumb sucker....

His oxygen levels have been lowered by 16% today so he is on 28. It's not good for them to drop too rapidly as if they suddenly go up they can't drop and increase the levels too much or too often to accommodate these changes, it's not good for them, but it has been steady this afternoon.

Jensen is having his alternate day weigh in tonight, which I'm interested in seeing the results of in the morning. Yesterday he weighed in at 911grams, but due to the amount of fluid he was retaining is not his true weight. Previously he was 855g so I'm betting on him being around 880g in the morning. The humidicrib that Jensen is in weighs him so the nurses don't have to move him. They lift him up and zero the scale and lay him back down and read his weight. We recently found out this crib costs $51500...!!

Phil is off to golf in the morning (trying to gain some sort of normality again) so I am braving the docs rounds alone. I'm sure it will be all positive news in the morning, so I'm not too concerned. I've organised a little walk with a friend in the morning...also part of my sort of normality, and also to kill some time while Phil is off flogging little white balls through the grassland.

More special visitors today, and more to come tomorrow....boy it's tough being so popular!

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Don't scare mummy please

This morning when we arrived Jensen's puffy face had lessened and he looked more himself. The nurses gave him a thing called Lasix to help him get rid of fluid through his wee. It doubles his amount of urine and therefore gets rid of some fluid. He still has a little around his tummy. We also found out he has had an E.coli infection. The doctors knew he had an infection and have had trouble locating it, but have been treating it anyhow. Now it has been found, he will continue the antibiotics for the next couple of days. After this they will try him back on his milk again gradually.

There was quite a scare this morning for us all when the nurse looking after Jensen activated the emergency alarm. Doctors and nurses came running from everywhere and I just stood there frozen, in a panic. Jensen's oxygen saturation plummeted and the doctor gave him manual breaths while they sorted out the respirator. The little man recovered well and responded to the doctors' treatment, but it happened again within about 5 minutes. What happened was he had some secretions in his tube and his tube had moved 2ml and was irritating his carina (entrance to/part of lung). If something irritates our carina we cough and get rid of the irritation, little Jensen needs some help to do this. The doctors cleared the tube and stretched it out into the correct position. They considered repositioning it but as he had it replaced just the other day and he was in a fragile state today, they have left it alone. It is also only 2ml out of place which is most likely Jensen's doing by wriggling about, and he likes to hold onto it. I am thinking about restraining his little hands to stop them venturing to such places!! He seems to just love having his hands in or around his mouth or on his face or head. Daddy had harsh words with the little man when he got back from work today for misbehaving and keeping all the staff on their toes and scaring the life out of mummy.

He is resting nicely after another blood transfusion and looking very pink and healthy. He is wriggling about again, a sign of him feeling better. Just as long as keeps his hands off his tube!! Please find incriminating evidence below:

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A quiet day

Jensen is a little quiet today and not his usual wriggly little self. This may be because of the morphine he had last night during the changing of his tube procedure, or perhaps he's feeling a little unwell. This afternoon he has picked up a little and all his important things are back to normal.....gases, breathing, heart rate etc. He is just looking a little plump with some fluid around the place.

He has another day of leaving alone, and not much to report today. Still as popular as ever with all his visitors, presents and cards in the mail. Such a loved little boy already.

Phil and I are quite tired today, and I can't think of much else to report on today, so will say goodnight :)

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27 weeks

Today Jensen is 27 weeks gestation and one of the 'old kids on the block' around here. He has had a quiet couple of days as he has been behaving himself and all the other new babies need much more attention than he. This doesn't mean he's not getting the attention he needs, just that the doctors aren't too worried about him at the moment.

Jensen had a platelet transfusion this evening which went well and was about to have a change of respiration tube as we said goodnight. The tube has a leak, which means he's not getting the whole amount the machine is giving him. This is because he has grown out of this tube and requires one that is half a millimetre bigger. It's hard to explain and understand but he is getting enough, although the right amount will help him progress quicker onto the CPAP machine.

His oxygen has been great today and down around 24. Regular air is 21 so not far off.... Yesterday he was up to 40 and 60 at times so he has had that nicely under control today.

Jensen received his Zaky hand today. It has been used to cradle his little legs and stop them from flailing around the place and also to keep his massive nappy in place. It looks so enormous next to him, but it seems to comfort him nicely.

I had a chat with the lactation consultant today regarding my milk envy. Not that I'm spying, but I can't help but notice other mums pumping for less time and getting double what I do. I've come to the conclusion that their babies are much bigger than mine, so my body is giving me what I need to feed my little fella. I am going to try and get a bit more sleep when I can and drink some more water and see if that improves things. Our bodies are wonderful mechanisms. As my baby was born prematurely, my body produces milk of a higher concentration. It knows my baby needs more nourishment than others born full term, so provides that within my milk accordingly.

Speaking of other mums, this place is not really a place to strike up random conversations. I know I've avoided them at times as I don't want people to know my business some days. Other days it's good to talk to those going through similar experiences. It's just when others are telling their stories, often of their babies being born at 33 weeks plus and being under weight...only weighing 1.6kgs, and knowing the question "what about your baby" is coming. When I answer with born at 23 weeks weighing 633grams, the imminent expression on their face arrives and I can see them thinking themselves lucky, putting their situation into perspective with ours and giving me a 'poor you' expression. I don't enjoy this. I don't want people to feel sorry for us or show pity through their facial expressions and body language. We are all dealing with a situation that is less than ideal, unplanned, and unexpected. We will all get through this and be stronger and wiser for it. I don't want their pity to lessen my hope and create worry, as I believe deep within my heart Jensen will be just fine and will grow up to be a happy, healthy and mighty strong little boy, and baby step by baby step (or preemie step) he will be home where he belongs with his mummy and daddy.

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