31 weeks

Today little man is 31 weeks, 9 to go until his due date.

On doctors' rounds this morning it was very brief...'up his feeds to 160 ml as his duct has closed. Liver scan was good....Your son is very boring now', said the doctor to Phil. Yay! In this case we love boring!! That means that next week when doctor Mary is back on she can't call him a complex or challenging baby anymore, because now all he needs to do is get big and strong.

His milk is being fortified to 26 calories as of this morning and increasing to 160 ml per kilo, which is now 14ml every two hours. He is weighing in overnight, but not sure if this will have an effect straight away, so perhaps next weigh in will be the start of his bigness and strongness..

Yesterday I was introduced to another parent of a 23 weeker that had returned for a check up with Dr Jenny. Her baby was 13 months old corrected age, she said which I think means 13 months from her expected due date. I don't think I will be saying this to people as it is very confusing, and once they get a certain age it all evens out anyway. Obviously when Jensen is one year old, developmentally he will be around 8 months old. Things like crawling, teething, developing motor skills etc for Jensen will align with his age from his expected due date of 20th May. Of course I am going to spend every minute with him helping him to catch up and develop his skills so he will be no different from any other child his age. They say that premature babies are more socially aware and developed as they have been in the outside world from a much earlier age than those born at term. He already looks at us like he can see us, and responds to our voices and touch. When he hears our voices he tries to turn his head to where we are or move his eyes in that direction.

I know I was saying a few posts ago that we couldn't wait to hear him cry, but now his little squeaks of sadness make me want to cry. Such tiny little noises, so much so we have to put our ear almost inside the crib to hear them. I just want to pick him up and cuddle him when he is sad or cranky and have found not being able to a little tough. This is where my beautiful singing voice steps in and seems to settle him straight away. This morning I had to sing in front of the nurse...which was a little embarrassing for a minute until she saw how it calmed him down. None of them seem very keen to participate in the singing, except of course Ester....

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Duct duct.....gone!

Today is day 50 and today we got the news we've been hoping and praying for, for so long.....little fella's duct has closed!

As doctors were preparing to start the paracetamol trial to close his duct, they did some pre-trial blood tests and a scan on Jensen's heart (not sure why they didn't do it in reverse), with the scan showing that his duct had closed. The doctors couldn't hear it swooshing around on the stethoscope as usual but thought it may be because it had opened up too large, as they believed it to be of substantial size. Needless to say there is no need for him to participate in the research trial.

When I came out of  hiding from the doctors doing their things, nurse Iris had a big smile on her face and said she needed to tell me something. I hugged her and cried on her shoulder before dashing off to call Phil in tears of relief..(which I got in trouble for, for scaring the life out of him with my teary hello). This now means that little Jensen won't need surgery to close his duct, which the doctors mentioned may be necessary last week and has had us concerned since then. All of our prayers and wishes on curly chips (my pop always said they were lucky) and to our angels has worked....

This also means that blood will no longer be pumped through his lungs and he should find breathing a lot easier with no fluid about. Essentially the duct is a hole in the heart. When the blood returns to the heart to be oxygenated again, the blue blood, as it enters the heart goes purple. This is when Jensen desaturates. Now, (although all preemie babies often do), he shouldn't do so as much..

Everything else that happened today is not important and I can't recall, but today nothing else matters...except that once again our little trooper has exceeded the doctors and nursing staff and they truly believe him to be as much a little champion as we do....

Phil and I even hit the pub for a celebratory beverage....my first one in 7 months..

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7 weeks

Today little man is 7 weeks old.

The doctors are wanting Jensen to participate in a trial using paracetamol to close his duct. As the two previous standard drugs have not helped the duct close, he is a good candidate for the trial. Half the babies in the trial are given paracetamol and half are given sucrose solution to keep it fair and ethical. We are all for progress in research to inform further practice and very much hope that this works for him.

Jensen is a little jaundice which the doctors believe may be due to prolonged use of TPN. They are going to do a scan on his liver to see if this is the cause and are giving him specific vitamins to help break it down.

Another cuddle today, which was lovely. I read a few books to him and a couple of emails. He appears a little cranky today so I have found myself singing 'The Wheels on the Bus' a little too often, although he settles by the time I get to 'round and round'. The nurse today has wrapped him up like a little bug as he was pulling at his face and disturbing himself and his mask. They don't usually wrap them in humidicribs as it is quite warm but the nurse lowered the temperature of the crib a little to keep him settled.

Fast asleep on mummy's bosom

Another small weight loss this morning of 6 grams, which is usual while getting used to being on CPAP. They are now fortifying his milk with more calories to help fatten him up, but this may cause him to become a little constipated....(hope not)

Please don't get upset or concerned if I don't write a blog for a day or two. It's probably because we are busy with Jensen either cuddling or doing his cares and things, or we are so tired we just flop into bed upon getting home. It may simply be that I have left my iPad at the hospital. Now that we can have more cuddles that's 3 hours of my day taken up with snuggling instead of sitting beside him writing his story.

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It's a cuddle fest

As Jensen is being such a good boy, looks like we can cuddle a lot more often. I had a 3 hour one yesterday and Phil is having one today. Little chap is much more mobile now with no attachments on his arms and legs, and only his snorkel you have to worry about. This is taped to the chair behind or onto your clothing to support its position.

Now that his pic line has gone, all medications etc are done orally through his gastric tube, so that's just his milk, caffeine, vitamins, and steroids. His milk has increased to 140 ml now and as of this afternoon will be fortified. This is just to add 2 calories to each feed to fatten him up a little. He weighed in a little lighter last night, losing 68grams, but having the pic line removed and because he's had some Lasix again could contribute to the weight loss. He is also burning a lot of calories concentrating on breathing now too, so hopefully next weigh in will be a gain.

When Jensen has the prongs in he seems a little cranky. Ester the 'crazy aunty nurse' as she calls herself, told me I should be singing to him to help settle him. She has been singing 'twinkle twinkle' to him. She is a funny tiny little Asian lady, who looks grumpy most of the time but has a quick wit and cheekiness about her. I caught her trying to karate kick one of the cleaners last week down the hallway where she thought no one could see her. She also keeps calling Jensen 'she'. Phil and I constantly correct her, she gets cranky with herself, and then explained that in the Chinese language there is no word for he or she, they use the same word for both... So she is excused..

Anyhow, Jensen had a crying face on and was making the tiniest squeak of sadness, so I started singing to him. The only song I could think of was 'The Wheels on the Bus'. Me, working with children for the past 20 years, and I can't think of another song! The only other one I can remember all the words to is 'The Dingle Dangle Scarecrow'. I am very unimpressed with my singing repertoire. I do however love 'The wheels on the bus' because you can make up any words you please. My latest version includes 'The chickens on the bus go buk buk buk', and 'mummy really needs to google the words'. Jensen LOVES this song! It settles him straight away, and he goes off to sleep (Or maybe he just doesn't want to hear my awful singing, so pretends).

I have also started reading to him. It is much easier and I feel like less of a knob reading to him while he is in my arms rather to him in his humidicrib, although I know he enjoys both experiences. The Very Cranky Bear, a story of a plain yet thoughtful sheep, and some Dr Seuss were yesterday's delights. On today's reading list with daddy is a book about a Bradford City player...or maybe it's one written by a Bradford City player...should send the little tike straight off to sleep..

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Cuddle time

Today is my Grandma's birthday. She is one of Jensen's Angels, and we think of her, chat to her, and thank her every night for watching over our brave, tough, little super star. Alongside my grandma, Jensen has another 5 angels looking out for him and giving him the strength he needs everyday, in my Grandpa, Pop H, Grandma and Grandad Jefferson, and Grandad Jackson. We love and miss them all very much.

Little fella is still very happy on CPAP today. Seems as though we are news of the week. More often than not a nurse is congratulating us and telling us how proud they are of him, and how they have wanted to come into work when they are not rostered on as they are busting to see how Jensen is doing.

Cuddle day today, I found out when we arrived this morning. I was nervous about disrupting him and perhaps making him less stable than he is, but the nursing staff and doctors gave the go ahead and even suggested it. I had a nest cuddle today, or more so a bundle cuddle, like a real baby hug for nearly 3 hours. Didn't feel nearly that long, and could have kept going had my boobs not been about to explode, and the nurses wanting him back in his crib. Maybe we can get to the cuddle every day part soon.

We have progressed to sharing a nurse now, which makes me a little excited and nervous at the same time. It means that he is not critical enough to require his own personal nurse which is fabulous, and the nurse is shared between the baby next door, so one is never too far away...It also means that nurse Jill is needed for littler less stable bubs. I grabbed her on arrival tonight to share the news...it's been a week since she's seen him and we've all missed her...

Feeds up to 120 ml today. Pic line out tomorrow, just in case he doesn't tolerate a feed but no more TPN, just milk now. Should go up to 140ml tomorrow. He should stop the antibiotics tomorrow too when the pic line comes out.

Help! These are not my pockets!!

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30 weeks

Today little man is 30 weeks.

The nurses happily reported this morning that Jensen was doing well and is very stable on CPAP. He has been sleeping most of the time since the change, but I don't think he realises anything has changed. He does however, reach for the tube occasionally for something to grab hold of. This evening he had to have his gastric tube replaced as he yanked his out...little monkey. He got cranky with the nurses last night when they changed him from the mask to the prongs, and the little darling let out a tiny husky noise, because of course now he's off the ventilator, he can use his voice box. This morning when he was a bit cranky, he was crying I stuck my ear through the window of his crib to hear him, but could only hear a funny little raspy noise. We can't wait to hear him cry!

I'm not sure if he is finding it easier or he is exhausted, because he is sleeping quite soundly. He is putting all of his energy into breathing at the moment and may not put on weight while he is so busy burning calories on this...he weighed in this morning at 1049g, that's an increase of one whole gram..

Last night he had his arterial line removed from his leg, which is to check blood pressure and gases etc, so he now has 3 free limbs, and as of tomorrow will have them all free. They are planning on turning off the TPN machine tomorrow as he is predicted to increase his milk to 120ml so will no longer need intravenous feeding...the milk will be all that he needs and the 120ml is considered a full feed.

Daddy has had the day off work today as we were supposed to attend a meeting with the obstetrician about the birth. A labour less than two hours requires a debrief and discussion of possible causes of preterm labour. They send the placenta away for analysis and discuss the results. Often there are no results or answers as to why it all happened, but my midwife hinted that there was a small sign of an underlying infection, so Phil and I decided we can wait until Jensen is home to hear that information. We weren't going to go at all, but I do want to know why, and also if it would happen again, because if the answer is yes, Jensen will be an only child.

On doctors' rounds tonight they have decreased his CPAP pressure from 8 to 7. They are all extremely pleased with him and everyone is so proud of the little chap. We've had lots of congratulations from excited nurses due to his pleasing progress onto CPAP. Dr Jenny, says a couple more days before she can breathe a sigh of relief, but that's just her medical self and we know our little Jensen will be just fine. He is very much a little super star.



Oh and yesterday the remainder of the umbilical cord finally fell off, so now he has a real proper little belly button.

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A big day for a little chap

What a busy day we've had!

When Phil and I arrived this morning we were very happy to see little Jensen had remained on the same pressure overnight and not gone back up as the 'not so positive' doctor had predicted. As I was gathering my stuff to express, I heard the word 'extubate'. This word means to remove the breathing tube. So there it was, the plan was to extubate the tube and try Jensen on CPAP...(Continuous Positive Airway Pressure)!!

Cuddles were postponed obviously, as he needed to remain as stable as possible and well rested. Cuddles can be had every day on CPAP once he is used to it and doing well. It all happened around 11:30 this morning, I hid away in the expressing room, as I am not good with all the doctors around and especially the 'red trolley' (resuscitation trolley), besides I would have been in the way. Dana explained the procedure to me beforehand and came to tell me when it was done....less than 5 minutes later! She placed the CPAP over his nose so he got used to that sensation before removing the tube. The little scrap didn't know anything had been changed. He has been doing well with it this afternoon, in fact when I asked one of the nurses 'is he all good?' She said 'no, he's awesome'... They can monitor how he is handling the change by doing his gases, as it shows the amount of CO2 in his lungs and oxygen levels etc. Often such little preemies can have trouble getting rid of the CO2, this is why Jensen has previously been on high frequency, just to aid this process.

Jensen may need to have the tube put back in if he becomes tired or his gases are not ideal. If this is the case, it will only be a short time before they try him again. I'm just happy he's lasted the afternoon as it is such a big change for him, and as we know he prefers small changes rather than the large.

So today's change means that he is now inflating and deflating his lungs by himself. Previously on the ventilator he was initiating breaths and the machine was finishing them off for him, now the CPAP just opens the first part (similar to the first part of blowing up a balloon) and he does the rest. This of course is all new to him, and perhaps he was being lazy on the ventilator, or perhaps because the ventilator has done this his whole life so far, he didn't know he had to.

So while Jensen is on CPAP he will have his little helmet, snorkel and chin strap on. The mask is alternated with prongs every 6 to 8 hours or during his cares just to relieve some the pressure on his face for a while. This won't be happening until tomorrow as they are leaving things be for tonight.

Still on 7ml of milk today because of the big change, perhaps another increase tomorrow.

He has lots of drop in visits from nurses this afternoon who say 'oh he's doing so well' in a nicely surprised voice. They're all so happy and pleased with him. He is such a little trooper and he has let everyone know, and he keeps creating little seeds of doubt in the minds of medical staff on their traditional textbook expectations of a baby born at 23 weeks. We think Jensen will cause the rewriting of the books! They say often what a little fighter he is and how much determination he's got for such a wee little fella, God bless his little heart. In fact the doctors just did their rounds and said 'he's a little champion'...

We also heard yesterday that little Valentina's operation went well and she has just been waiting for a bed here as it's been full, that's why she's been away so long. News just in....she's arriving back tomorrow and her in her old room next to Jensen.

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