17 feb

So I was teased this morning with the promise of holding Jensen today in his nest while they change his crib, only to be told they weren't going to change his crib now as that is 'old practice' and he'll stay in his current one as long as he can. So maybe I can have a kangaroo cuddle on the weekend instead.

A kangaroo cuddle is where the baby lays on your bare chest. You wear a hospital gown and no bra so it's a skin-to-skin cuddle which helps with the bonding process. All of Jensen's tubes and attachments will be placed strategically on the chair and sometimes taped in place. These cuddles can be between one and three hours long.

Today they are turning down his respiratory assistance in order to prompt Jensen to breathe more on his own. The aim is to get him onto a CPAP machine shortly, and for this to happen his lungs need to do more work on their own. If Jensen doesn't respond to the lower ventilation he may need some steroids to help him along.

Once he is on CPAP, he will be able to make noise. He will no longer have just a crying face when he's upset, but the noise to match. He sneezed a couple of times last week, little cutie, with no sound. Reminds me of that scene out of Lightning Jack where he gets shot in the foot.

Jensen has started back on his milk today, with 1ml two hourly. And his tummy is less swollen. So far, he has tolerated all but one feed, so hopefully he'll get back into the swing of things in that department. Another little weight gain overnight...now weighing in at 877g. Not too far away from a kilogram now! (2.2lbs).

The burns doctor paid us another visit today to check on Jensen's leg. Now he's just having some sorbolene cream put on it with a little dressing on top. It has healed well, but the skin is still so fragile.

Jensen's little neighbour Valentina hasn't been very well the last couple of days, and tonight is being transported to Westmead hospital for some surgery I believe. We are all sending out positive energy and thoughts for her, alongside Jensen, and all the other little preemies.

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3 weeks old

Little Jensen is 3 weeks old today....This morning, the doctor that was on when he was born couldn't believe how big he's gotten since she saw him last, and I think is quite impressed with his progress. This is the same doctor who told us he had a 30% chance of survival at birth, and other things we didn't want to hear, but Jensen is busy proving her wrong, keeping her happy, and quiet! He is one special little man.....

Not much happening today, a restful day. Still some swelling around his belly, but X-rays overnight show that it is just a bit of fluid and his bowels seem to have kicked back into gear properly.

Otherwise very busy day in the NICU today with four new arrivals. One at 24 weeks, one at 28 weeks and twins at 26 weeks. Seems that many people have premature babies. The poor father of the twins is doing this a second time round, with his first set of twins born at 27 weeks. So there's been a lot of traffic around today with doctors, nurses, machinery, humidicribs and new parents, all on the move.

We have just been quizzing Jensen's lovely nurse this evening, Kathy, on the requirements for him to move in to the High Dependency Unit. He needs to be 1.5kgs to be in a cot, and to not be on CPAP which is the next level of respiratory assistance Jensen will move on to when he is ready. We figure the whole weight thing will be a breeze, and hope the breathing thing will shortly follow. We are aiming for him to be in the HDU in time for my birthday, as that would be the best birthday present ever...and figure 6 weeks is not an unreasonable hope.

Speaking of best presents ever, Kathy says its just a matter of days until I can hold Jensen. They need to change him out of his humidicrib as he doesn't need the humidity anymore and it has to be cleaned after a while, so I will get to nurse him while they change over all the gear...I'm so bloody excited!!!

What a difference a day makes

We are super pleased to report that Jensen is looking and feeling much better today. Between us saying good night last night and arriving this morning Jensen has managed 4 poos which is a good sign his bowels and tummy are sorting themselves out with the help of the antibiotics. His tummy is still a little swollen but much less than yesterday, and he has a bit of fluid in areas, but his colour is back, his skin looks good, and his little eyes are nice and clear and healthy looking, and has weighed in at 849grams overnight.

Today the humidity in his crib has been switched off. This means that he is now in the same air as we are...around 45% humidity, and also that his skin is now strong enough without the moist air previously supplied by the humidicrib.
This morning Jensen's gases were very good and above the levels the doctors are wanting. He is also taking more breaths at times during the day. He was initiating 86 breaths out of 86 breaths earlier, which means he is getting the hang of breathing and not requiring as much assistance. When he is in a deep sleep however, he is not doing that many. The next step here for him is to move onto the CPAP machine, which is like a little oxygen mask strapped over his nose and mouth. This will help him with the initial breath, similar to the first hard part of blowing up a balloon, and Jensen will do the rest on his own. So whenever the doctors think he's ready...baby steps, baby steps.

This morning Jensen enjoyed a little massage and moisturise from his nurse Sharon. He particularly enjoyed having his calves massaged she noted, and says this is an area a lot of babies enjoy having massaged.

Today Jensen has now been promoted to 3 numbers on his screen just like all of his roomies, from his previous two. This just means that the blood pressure and heart rate device that has been attached to his left arm since birth has now been replaced with two little probes on his chest. Because his skin was so fragile at first he was unable to have them on his chest. They will be replacing the removed arterial line in the next little while which will enable them to take blood etc when necessary.
Jensen has been a popular little fellow today with lots of visitors. I do believe he has also quickly become a favourite of most of the nurses in the NICU...after all he is the cutest little one in town, with such a strong will. Bless his heart.

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Valentine's Day

Happy Valentine's Day everyone!
Phil and I had a quick romantic dinner for two at the local burger place tonight, which was nice. We also wished our little love Jensen happy Valentine's Day this morning. The doctors are still trying to figure out what's going on with his tummy, and there appears to be some fluid around his bowel which may be causing the problem. He has managed a bit of a poo this evening, and his aspirates(gastric juices) are clear, so that is all good news. We just want him back to his thriving little self as soon as possible, growing in leaps and bounds.
The last couple of days I have been struggling with the whole 'why is this happening?' What have we done to deserve this? And of course there is no answer or reason, and I'm hoping my brain will stop tormenting me with such questions and just focus on getting Jensen to where he needs to be. He was pumping out the breaths this morning, and is now having a good deep sleep. His heart rate and oxygen levels are all good as well.
Now onto this great little thing I have recently become aware of. It's called a Zaky hand pillow and it looks like an amputated Muppet's arm. The purpose of this thing is to imitate a mum or dad's touch for preemie babies. It is filled with some sort of bean, that can be moulded to allow the right amount of pressure for your baby. It can be used to comfort a baby, particularly a preemie, and give comfort as it imitates the womb by cradling the baby. It can be placed on top of the baby, as in a parent's hand when they are restless, and can be warmed to create the heat of a life like hand. The physiotherapist here has given us one to try which I have taken home and washed ready to snuggle the little Mr. Here's a pic for you all to visualise.

It turns out that I know a couple of the mothers here with their babies, which is very random indeed. I bumped in to one in the expressing room. Turns out she is a teacher at a school I had done some casual work at last year. Her baby was born at 36 weeks, but very underweight (1.6kgs), she is here with her little one in the Low Dependency Unit and preparing to go home very shortly. Another here with twins, I have paired up with at the gym for boxing. She too is a teacher funnily enough. Her babies were born at 30 weeks, but had Twin Transfusion Syndrome I think, which is where one twin takes all the nutrients from the other, so had one sick little bub upon birth. They have just moved this week from intensive care after 7 odd weeks to the High Dependency Unit across the hall. Although both of these ladies are just acquaintances, having chats with them has been a good outlet, everyone here is experiencing their own journey, none harder than the other, no mother wants to give birth to a baby they can't be with or take home right away. Poor things have had me crying on their shoulders in the hallway with breast milk in one hand, and my pump and timer in the other. A great way to get to know someone quickly I guess. I expect they may do the same to me one day, or even better...we can share stories of the little milestones of our little ones, and the eventual discharge from the NICU.

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TGIF

Today is a brand new day, and it's going to be a good one. Yesterday, I don't want to see happen again.

Little Jensen didn't look well yesterday, as I mentioned he had something going on with his tummy. It appears to be an infection, which they have started treating with antibiotics. The results from the blood taken will come back today which will confirm or deny the infection. Thankfully there is no perforation or bleeding. The doctor says the ibuprofen used to help close Jensen's duct could perhaps be the cause of his upset tummy, but regardless he has now ceased that medication, as the scans yesterday showed that his duct is now closing and has reduced from 3.8ml to 1.8ml, so is well on its way to closing. Once this is closed Jensen will feel better and his little system will be able to function more productively. The duct in babies born full term closes between 6 and 12 hours after birth. Before this, the placenta looks after the open duct, and once the placenta is gone the duct knows to close. Preemie babies take a little longer for theirs to close and usually need some assistance.

Today should be a nice quiet day for Jensen with lots of rest. I was speaking with the nurse educator Claire earlier (who is from Bury, UK.....he's just surrounded by the English here..Leeds, Manchester, Liverpool, Sheffield you name it) and she says the most important thing is that his lungs are working well, and it is a secondary problem with his tummy.

Amidst all the goings on of yesterday, I didn't even realise that Jensen had been returned to his usual mode of respiratory assistance. He was taken off the high frequency mode ventilation as his lungs were working too well, and essentially they were over ventilating him. The aspirates from his tummy (that is where they test the contents of his tummy to check digestion and so on) have been quite murky looking, but he has just been put on something to hopefully rectify this, and as the day has gone on the levels have decreased. His gases are good today (which include oxygen, carbon dioxide etc) his sodium a little low....this may be attributed to he no longer being in my tummy and he is missing out on his daily fix of twisties from mummy :).

This morning a burns specialist surgeon from Westmead hospital came to find us in the parent lounge. Note to doctors - please get straight to the point when introducing yourselves and your purpose for your visit to parents, none of this dilly dally small chat is required. We need to know straight away not to panic because of your presence. Anyway, he wanted our permission to use the burn (wound) on Jensen's leg to educate doctors and nurses in the future, and to publish and document his case in a medical journal, using pictorial evidence. Apparently there are another two cases of this having happened recently, at other hospitals, with the others being much more severe than Jensen's. I'll post a photo of Jensen's leg as it was last week, but the others I don't wish to share. We are more than happy to help educate nurses and assist in research necessary to inform such people on what may go wrong with such precious, fragile babies. His burn is not due to negligence or carelessness of the nurses, all babies, including those premature, are wiped with an alcohol wipe before having an injection. I guess the risk of infection if not, is high especially with the presence of fluids, blood and other secretions at times around during birth, and in Jensen's case, his skin was just too fragile to cope with it.

Jensen is part of some research in a couple of other areas too. I'm not sure if I mentioned previously, but the doctors here are researching the effects of probiotics on preemies, which we have agreed to, and also the effects of using iodine in the locating of blood lines, which we also agreed to. It turned out they could locate Jensen's without using the ink, but we were made aware of the side effects such as temporary thyroid dysfunction. All of this is being used as part of research in the care of premature babies, and therefore escalating the rates of survival and specialist care.

Phil and I would like to thank everyone for their love, support, friendship and positive energy. We truly have an amazing bunch of family and friends around us and appreciate everything you do, offer to do, or just wish you could do. All we ask is for everyone to stay positive, and please understand that on days like yesterday, Jensen or myself may not be up for visitors. Please don't be offended, sometimes he just needs a peaceful day of rest, and sometimes so does mummy. The nurses can be quite particular about this also, keeping the best interests of Jensen in mind.

Stay tuned for tomorrow's post where I will be informing you on a new, somewhat creepy, product that I have found to help comfort little Jensen while mummy can't.

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26 weeks

Yesterday turned into a busy day full of prodding and poking so I didn't get the chance to write a blog. I will make sure today's is a long one for you.

Today, Jensen is 26 + 1 weeks, just 14 weeks until he'll be full term. Wish I could jump into a time machine and be 14 weeks from now, going home with a happy, healthy baby.

Jensen wasn't getting rid of carbon dioxide from his body well yesterday so they have changed his respiratory assistance mode to high frequency. This gives him 600 breaths per minute and takes the pressure off his lungs. His lungs are just 2cms (about an inch) and they get tired easily. The high frequency mode is like a little whirlwind in his lung, and vibrates his body a little. When I came back from expressing, his eyes were open and his little body was vibrating. I cried. To me he looked like he didn't know what was going on. The next time I came back, he was asleep and looked much happier and only slightly fluttering. I don't like seeing him on this machine.

He had some tummy time again this morning, and has just been rolled onto his back. He looks like he is very comfortable on his knees, but when he is flipped back over, looks a bit squashed, due to the amount of fluid and softness of his head. He looked a lot like his daddy when he was a baby this morning I thought (nothing to do with his squashed head...).

Overnight Jensen was weighed again and is now 821grams. He seems to have started a trend of averaging a 25 gram weight gain per day. His head circumference has gone from 21.4 to 22.7cms. He is nil by mouth at the moment with the changes made yesterday, so hopefully it won't be too long before he's on milk again and can continue to grow and grow.

I found a website that sells clothing for preemies, and those that are the NICU. They accommodate for tubes, etc and are just a bunch of flaps that velcro together. We ordered one for babies weighing between 500g (1lb) and 1.5kg (3lb). His new little outfit arrived in the mail yesterday, it actually looks a bit big for him, but when he can wear clothing (which will be when he's out of the humidicrib) I guess we'll see. Here's a picture of it in daddy's hand.

Today is another busy day. Jensen is having another blood transfusion and scans on his head, heart, tummy and lungs. These are to check the progress of his duct closing and also just to check that everything else is well and functioning properly. His tummy is a bit upset today so they are sending away some blood to test for infections. "Welcome to the world of a preemie" the nurse said to me as I started crying again. At least this is all normal and they all go through it. The little loves have so much to deal with, you get one thing under control, and something else pops ups that needs attention. It's a two steps forward one step back kind of thing, which I need to remember, and Jensen's going to be such a resilient little thing after all this, and luckily he seems to have daddy's calm nature and not get bothered by too much.

The last couple of days there have been some ups and downs, and I guess we get a bit comfortable when he's doing well and are taken aback when he has a down day. I am not doing very well in the 'let's stay strong' department currently, but I am trying very hard. Phil on the other hand, is a tower of strength. I wish I had his strength, so I could comfort and support him as he does me. He is always trying to make me smile, and hugging me or holding my hand. He is the most amazing man I've known, and I count my lucky stars every day to have him by my side, and as Jensen's father. He is such a wonderful father already, which makes me love him even more than I already do.

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10/2/15

Today both Jensen and I are feeling a bit unsettled. Jensen being a bit restless, alongside me feeling very tired today, I think is the cause of my restlessness. I think Jensen's excuse is the start of the ibuprofen to help close his duct. Apparently the duct being open creates constant headaches, he was pulling little headache faces this morning, but appears less affected by them this afternoon...hopefully the medicine is doing its job. Also I think the whole opening of his eye yesterday has confused him, he is desperately trying to open the other, and then perhaps the world will make better sense to him.

I've actually decided to make a mobile for him instead of ordering one online. I figured it'll give me a little project to do in between expressing, doing his cares, and writing this blog.
His milk has again been increased today to 6ml two hourly, and he did a proper little poo for mummy this morning, which was much easier to change than the meconium ones. He weighed in at a hefty 769 grams last night so is doing well in the putting on weight department (has mummy's genes there). As his milk has now increased from 80ml per kg to 100ml per kg they are able to turn off his lipids which have been supplying him with the fat he needs, as he is now getting enough fat through his intake of milk.

When Phil and I arrived this morning, Jensen was all swaddled up and his legs were taped down to his nest. Because he's been a bit restless and very active, the nurses didn't want him to burn too many calories, so did this to stop him from moving about and also so he feels snug and secure. As they are turning down the humidity in his crib (55% today) his skin is drying out and will become less precious, so he is able to have a little muslin on as a light blanket. Maybe this means I will be able to hold him soon? I am desperate to have a cuddle with him, two weeks is a long time to wait. I hope it's not too much longer, but I don't want to keep asking and end up with the nurses letting me before Jensen is ready.

They are going to turn the respirator down shortly to encourage Jensen to increase his own breaths. He can be a bit lazy in this department and of course this is something that he will need to remember to do. It's often when he's fast asleep, he forgets to initiate his own breaths, allowing the ventilator to do all the work for him.
Last night I quizzed nurse Jill on why Jensen has a daily shot of caffeine. It's because it stimulates his heart and brain, and they kick in and remember to do what they are supposed to do, it prompts him to breathe and helps to regulate his system. Similar outcomes to those of us requiring a caffeine hit most mornings I guess, and something that most of his roomies are having as well.
This afternoon Jensen has some male company. His nurse is Cameron, a male nurse. I think Jensen, as much as he loves all the ladies, might appreciate another hairy faced male around. There are not too many of them in this department, I think just one or two out of the 80 nurses in the NICU.

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