Tuckered after some tucker

Today little man started off the day with a fabulous breastfeed and showed off his skills to all the right people. He did such a fabulous job, he tuckered himself out for the rest of the day. The nurse says for him, if he can have one breastfeed like he did this morning, just once a day, that is fine, so not to get frustrated. Once he is off the Optiflow, he will have more energy and find it easier. We are hoping this is in the next couple of weeks, once he has had his vaccinations over the weekend.

He's had a very steady and stable day with his oxygen requirements remaining quite settled, and on the low side. He's just slept a lot in the quiet and dark today, it's been quite a restful, and peaceful day. Today the dietician came to review Jensen's calorie intake. The MCT oil he's been having is affecting his poos a little too much, so she has lowered that, and increased the calories with a substance called Polyjoule. This is just carbohydrate, or sugar. So his extra calories now consist of fat and sugar, rather than just the fat of the oil. It passes through his system quite quickly and easily, so won't be causing any obstructions like the fortifier.

Tomorrow we have our weekly visit from the physio, and a follow up eye check from the ophthalmologist.

Posted with Blogsy

37 weeks

Today little man is 37 weeks....3 weeks until he's supposed to be here.

After thinking that laser eye surgery was his last big yucky thing to get through, we got news yesterday that his hernia has returned. This means another lot of surgery to repair it. Seriously, we can not catch a break. After three months of living this, we are all well and truly over it all. I'm becoming frustrated with everything and little things are escalating in my mind into very large things.

We are yet to meet with the doctors and surgeons to go through it all, but have been advised so far that the hernia is a large one, and easily reducible, and therefore not an emergency situation like last time. Obviously if it becomes incarcerated and unable to be reduced, we will have to return to Westmead sooner rather than later, but for now it looks like something that can be taken care of once we get home, and Jensen is a bit bigger. As you can imagine we never wanted to return to Westmead hospital, but there, they are the experts.

Little man appears to have a little cough and a snuffle. They have taken a swab to test, and hopefully it's not anything to worry about.

We just want to bring him home now....three months is long enough!

Posted with Blogsy

Monday 27th April

Today little man is 13 weeks old.

It's crazy around here at the moment. New admissions being squeezed in to places they shouldn't. More stable ones being shipped out to make room for others. The whole state is currently red, which means no NICU in NSW has a bed available. From here I guess is where babies born, start being transferred to Canberra or Queensland. Lucky for us that we were booked in RNS in the first place, (if you are not, as soon as baby is old enough they are moved to the hospital where the birth was originally to take place, most hospitals can only care for babies from 36 weeks) that we are locals, and that we are out of intensive care....this is the part where beds are needed the most.

Little man tried for three breastfeeds today and did pretty well. He had two fabulous ones during the day and an extra one in the evening. He showed off his skills in front of the speech therapist too, who was very impressed with his efforts. She'll be visiting again later in the week, so I'm hoping he is starting to get used to coordinating the suck, swallow, and breathe routine, although I'm not sure I have the coordination for the nipple shield, a precious hungry baby, and tubes everywhere....

I was surprised with his enthusiasm for feeding today as he still appears very grumpy after his surgery. He hasn't tried to open his eyes lately and seems to be refusing to. His eyes aren't as puffy as last night but I was worried he might have been in a little pain. He is not on any eye drops or pain relief and Dr Swapnil says it can take up to 5 days to recover completely. I guess it's something we should have gone through with the eye surgeon, but it all happened quite quickly, and it wasn't something I really thought about until later. He'll be visiting again on Friday.

Posted with Blogsy

Three months old

Today little man is three months old. Today little man is very cranky, and tired after the goings on of yesterday. His eyes were a little puffy and looked a bit sore this morning. He hasn't opened them very much today. He has also cried a lot today, every time he is touched or woken.

Doctor Mary this morning said Jensen had recovered surprisingly well (???) from the surgery. This is because he had come off the ventilator quite quickly and straight back onto Optiflow which was being weened back down to four overnight, and he was in air. Once he got back to three this morning his oxygen went up to 24% which is where he has hovered for most of the day. He let everyone know he did not like the compression pack on his eyes, so we made do with some sunnies to block out the light (which he also protested about after a while). We ended up putting a screen up beside him to block any light that could have been bothering him.

He's back on to full feeds, and was due for a weigh in today. Due to his ever-present crankiness we will weigh him tomorrow, when hopefully he's feeling a little better. Apparently he had 1800 zaps of the laser in both eyes, which I guess is a massive amount for any human, let alone one weighing 1.6kgs....

We will be returning to breastfeeding tomorrow, and rumour has it going up to three a day. Hopefully little man is feeling up to it in the morning. Mummy took advantage of no breastfeeds today and had a little sleep in.

We didn't want to leave our little Jensen tonight as he was so sad and miserable.....I hope he's back to his happy little self in the morning.

Posted with Blogsy

Another little hurdle

So yesterday we were informed by the Ophthalmologist that Jensen would require laser surgery for Retinopathy of Prematurity (ROP). To be honest, deep down I kind of knew he would need it, but still I spent most of the day in bouts of tears. It wasn't so much because of the surgery, as I knew it was a fairly straightforward procedure, and performed here in the NICU, but more because it was just another thing the little fella had to go through, another hurdle for him to jump. He's just been through so much already and I just want him left alone now to grow. All I could say to him was that I am sorry.

So with yesterday behind us, Phil and I arrived early this morning to spend some time with Jensen before moving into the laser treatment room. Thankfully, the procedure is done here at the hospital, just next to ICU, so once Jensen was prepped and ready, he was wheeled just across the hall. The procedure itself took just one hour, but with intubation, morphine and so on, the whole thing took two hours. Phil and I sat dozing in the parent lounge watching the ANZAC services on television (daddy was tired from attending a dawn service this morning) waiting for news from the surgeon.

Doctor Smith was very happy with how the surgery went and said it couldn't have gone better and that Jensen was comfortable and a very good boy throughout. So now it's just a case of keeping an eye on him weekly while we are still in the hospital and every two or three weeks once we leave, just to make sure more surgery is not required at a later date, which is rare. Little man just needs a cold compression pack for the next 24 hours (which he does not like) and to recover. He was extubated at 4:30 this afternoon and gradually worked his way down from 6 litres of flow to 4, with the expectation to be back at 3 by the morning. It took him a little while to get back into the habit of breathing after being on the ventilator again and being so groggy and exhausted, but seems to be doing very well now. He's just a little puffy and a bit cranky. It's nice to hear his little voice again though, we've missed it, as we have holding him today.

Feeds will start again tonight at midnight, and he should be back on full feeds within 12 hours of that. Breastfeeding won't be attempted until he is feeling more like his little energetic self. Taking advantage of that, mummy is having a sleep in in the morning...

Posted with Blogsy

Whoa...hold on a minute

I am feeling a little frustrated with the whole feeding thing at the moment. The nurses are pushing for the bottles but as he gulps so much and hasn't got the whole swallowing thing down pat, he constantly braddys, and is then too exhausted to feed. I'm talking after two or three sucks. I feel like since then he hasn't been breastfeeding well either, so I am going to voice my concerns in the morning with the nursing staff. Everything moves so quickly in High Dependency it's making me anxious and I'm feeling very emotional about it all. We need baby steps, as we've gotten so used to, and it's gigantic ones over this side of the hallway.

A visit from the speech pathologist today to observe his breast and bottle feeding, no luck as he started on the bottle, exhausted himself, and then wouldn't breastfeed, so another visit tomorrow. She seems happy with him so far.

Also tomorrow is another eye test, so hopefully that won't mean surgery on Saturday. Poor little man with so many hurdles to jump....hopefully this is the last and we can just work on getting bigger and stronger. Little fella weighed in at 1668 grams today...little chunk.

Posted with Blogsy

36 weeks

Today little man is 36 weeks, 4 weeks until he is supposed to arrive.

Today he had his first little try with a bottle, and oh my goodness, he sucked like he was in an orphanage with twenty other babies fighting for the last gulp. He gulped so fast and so quick he was giving himself braddys and having to recover, poking his tongue out all over the place, then falling in a heap exhausted after not knowing what to do with all the milk he was trying to swallow. At his gestation, he is still learning how to suck, swallow, and breathe at the same time. Not a person around has any doubt he will be a fabulous feeder, once he gets the coordination of it all.

I got upset and had to hold back some tears when the nurse gave him his first bottle. I think it was because I couldn't do it, as well as the fact he was having a bottle and not the breast. Obviously because I am not staying here with him overnight he will have to take a bottle at some stage before coming home, but it was a big step and he was so good at it. I was also concerned he may prefer the bottle over the boob, but I have been advised it will help him to develop the muscles he requires to be a good breast feeder. It is also a similar texture to the nipple shield, so hopefully to him it's much of a muchness, with the bottle just being more of an instant gratification thing.

Weekly physio session today, merely another observation with some tips for strengthening and control. In such premature babies, the main concern is Cerebral Palsy. The physio however, is very happy with Jensen and says he has good strength, flexibility, and head control. She was very impressed with his head movement and control and also that he can bring his hands together (little cutie looked like he was praying). Apparently next week, he's having a go in a chair....not sure what that's about, but will find out I guess.

Posted with Blogsy

My new crib...

Little man is doing well after being hatched out yesterday (yes, that is actually the correct medical term used by the nursing staff for coming out of a humidicrib). He has maintained his temperature throughout and looks to be keeping his new home.

I'm a bit stiff after being wrapped all night

Today we have given three breastfeeds a go, but little man was a bit too tired this evening and conked out on my boob instead. The nurses may start giving him a bottle throughout the wee hours just to increase his daily suck feeds. It is also easier to register how much milk he has taken this way. I'm more than happy for him to have some bottle feeds as this will make life easier later, but I don't want him to prefer the bottle to breastfeeding, so fingers crossed.

Oh no....Aunty nurse found it! (the dreaded peanut pillow)

As word spreads around the NICU, I am met with lots of visits from nurses who have heard the news. Everyone is so pleased for us and so proud of Jensen. He's come such a long way, and yes it's taken a long long time, but he started so early, little, and weak, and is now growing into such a big, strong little boy. He has affected so many people around him in so many different ways, casting doubts over doctors' minds, creating hope for others in our situation, overcoming all odds against him, and leaving a loving and lasting impression on everyone who knows him....

Posted with Blogsy

12 weeks old

Initially, today was supposed to be my first day of maternity leave. It's also the day daddy was supposed to be banned from beer, in case I was to go into labour early (ha!) and need to be driven to the hospital. Instead, today little man is 12 weeks old, and today he moved into a big boy's bed. Yep, Jensen is now in a cot.

I was a little bit nervous about it when first mentioned this morning, but talked myself  around. Jensen can now maintain his body temperature consistently and is over the required weight for a cot, weighing in this morning at 1599 grams. Reasons he will enjoy his cot include: he can finally wear clothes, he can be wrapped now and sleep so much more soundly, not wake himself up with his arms flailing about the place, not pull his prongs and gastric tube out, and feel very warm and snuggly. Reasons he may not enjoy the experience.......he is wrapped up and tucked in soooooo tightly (something mummy hated her grandma doing), he'll now have to get himself used to sleeping without a cover over his head, noise from the baby next to him, and people ogling him and possibly touching him way too often.

Little fella hasn't put on very much weight this weigh in, just 23 grams, so his calories are being increased to 26. As he can't have the fortifier in his milk any longer, this is just a bigger dose of MCT oil. This can, and has made his poos loose, and I'm hoping won't worsen even more with the increase.

 Dressed in my 00000 and ready for my new house

Vaccinations were suggested today, but Jensen nor mummy like too many changes at once, so we have postponed them a week. He's only just been lowered onto Optiflow of 3, and should he get a temperature or feel unwell from the vaccines, he may need more respiratory assistance, and would then have to go back across the hall. Also, I would like to give him a bit of a chance to increase his weight a little more. As babies often need some respiratory support with immunisation, I won't wait until he's in Low Dependency, as that'd mean moving backwards, but I would like to just give him a break and let him grow a little. He has another eye test on Friday, and that has to be taken into account also. Should we have had the vaccinations today, he would have recovered by Friday....just in time to feel awful again with the eye drops and perhaps surgery....no thanks!

Posted with Blogsy

Daddy's birthday

Today is daddy's birthday, and along with some awesome presents from mummy and Jensen, daddy and mummy both received the best present ever......little Jensen has now gained residency in High Dependency!! One day short of 12 weeks in intensive care, little man has been packed up and wheeled across the hallway.

I tried to keep it a surprise for Phil, as I picked him up from golf. I told him I had forgotten about another present I had left for him at the hospital and for him to give me a few steps lead to hide it from him. Totally went for it with his boyish curiosity, until one of the doctors said to him 'your boy is in HDU today' as we were making our way down the hall. I whipped my head around with a disappointing glance.....my chance for a surprise however, soon returned when grandma and grandpa turned up and headed to intensive care only to be redirected to high dependency..

This morning on rounds they mentioned lowering his pressure to three and moving him, as yesterday's eye check proved inconclusive in regard to surgery, so now it's a case of should he end up needing the surgery, he can pop back in to intensive care to be ventilated for 48 hours and slide right on back to HDU afterwards. The ophthalmologist will come again on Friday for another look and if he thinks surgery is necessary, will be done the following day. Or if not, he will keep checking until he finds what he's looking for. He says Jensen is on the border of requiring laser as his blood vessels haven't quite gone far enough but are perhaps on their way. Bottom line is, he won't let him go blind, and that's all I'm concerned about. If he ends up needing glasses or has a lazy eye, so be it, and we can sort that out if and when, its no big deal in the scheme of things.

Little man has been very tired and a little grumpy today. This morning he had done a poo so large it was all over the sheets, his legs and back. It was a mission to change him and he required a top and tail bath before having a little breastfeed. By this time he was exhausted and had been awake for quite a while so wasn't really that interested. He had a couple of braddys and went a bit pale, which worried me, but the nurses say it was just a big morning for him and also could still be the side effects from the eye drops he had yesterday. They often cause desaturation, braddys, vomiting etc....in other words the babies don't particularly like having them.

Daddy had lovely birthday cuddles this afternoon in our new room and cuddle chair, as mummy unpacked, and tried to settle in to our new 'home' for now across the hall...

Posted with Blogsy

A peanut allergy

No changes again today. Little man was not interested in breastfeeding this morning. He flatly refused by closing his lips. I think he was too tired, as I kept him waiting until the doctors had done their rounds and they were a little late starting this morning. This afternoon however, he did well. After a slow start, he fed for around twenty minutes and had the perfect technique, bless him. He seems to sneeze at every breastfeed and I'm starting to think he's allergic to nipples! Speaking of nipples, my inhibitions are slowly evaporating as my breasts become a common part of the scenery for the nurses.

He had his first little tantrum today, and I realised I am going to have my work cut out for me in a while's time. The tanty was over his peanut pillow, and I do believe he doesn't enjoy it. He arched his back and slid himself up away from it. He also raised his bottom from the bed with his big strong legs. Looks like he's going to be a strong, determined and firey little munchkin.....

Dr Eye is coming again tomorrow for another check. Everyone is making me feel like surgery is a given, but we will find out in the morning. I'm not looking forward to it one bit. The eyes drops hurt and upset him, and our usual routine of feeds and cuddles will depend on how he's feeling. We are going to try and catch the doc in the morning as each time he's come previously we've missed him...even though we get here at 730 each morning.....tomorrow it's 7am just in case..

Posted with Blogsy

Love and snuggles

More breastfeeding today, which is lovely. It can be a bit frustrating though, as I have started using a nipple shield in order for Jensen to latch on correctly. Getting this on and in can be quite an ordeal, but once on, seems to work a treat. The preemies don't have the muscle strength in their mouth, or fat pads in their cheeks to latch, so the shield helps them draw the nipple in properly for a better feed. He is very enthusiastic bless him, and knows where the good stuff is. I feel much closer to him now that we have started breastfeeding, which is wonderful. I've been very aware that a lot of mums with babies that are separated from them have detachment issues, or the babies themselves do. Jensen definitely knows his mummy, as I had the nurse hold him for me in between cuddles as I needed a wee, and he flailed about and cried, but as soon as he was placed back on my chest he calmed down and started saturating high again.

Sourcing my own food is exhausting

A visit from the physiotherapist today (the first of weekly ones), proved well. She is happy with him and he is doing very well for his age. It's mainly an observation session for now, but she is impressed with his alertness and hand to mouth/face movement. This is the main thing she was looking for. She noted that his head is becoming slightly flat on his favoured right side, so has given Jensen a peanut pillow to help him keep his head straight and even it all out. She says it is minimal, and all preemies end up with a cone head usually due to the amount of time they lay around in their cribs developing, but not our little Jensen. However, with his peanut pillow on he looks like Princess Leia.

Speaking of Princess Leia, daddy has made his first (and only allowed) Star Wars paraphernalia purchase for Jensen, a Darth Vader pillow case. I do believe there is a knitted batman outfit for newborns on the way in the mail aswell.

Posted with Blogsy

35 weeks

Little man is 35 weeks today.....5 weeks until his due date.

No real changes today apart from going to two 'sucks' a day (two breastfeeds), which we are both enjoying. All the nurses are impressed at how clever he is, knowing what to do already. I haven't quite worked out my new expressing schedule though, to work in with breastfeeds and cuddles....

We had a very funny moment during this morning's breastfeed where Jensen had a sneeze coming, then he didn't, then he did again, then he didn't. Finally he sneezed and mummy laughed so hard he nearly jiggled off her chest. I wish I had recorded it, the funniest and cutest thing ever.

Watch out world...here comes another plumber!

Posted with Blogsy

Don't like goodbyes....

Today was an emotional day for us all. Today we said farewell to grandma and grandad Jackson as they commenced their long journey home. We have loved having them around, although we didn't get to see that much of them being in Westmead and all, it was just nice to have them here pottering about the place. We are hoping we will see them again sooner rather than later. I'm sure the security guards on the Harbour Bridge walk will be wondering where they are in a day or two..

Today little man weighed in at 1505 grams, so can now move on to three hourly feeds. He is now having 30 mls three hourly...I thought this might be a bit much for him with his previous tummy problems, but he has been digesting it well and crying for food around feeding time.

Doctor Martin is keen to get the ball rolling with Jensen and has lowered his Optiflow pressures to 5 today, with a plan for 4 tomorrow in order to ween him off it all together. He is also keen to increase the breastfeed to two a day. This is not included as a feed as for now he is only getting a drop here and there before exhausting himself. The oil seems to be working well and keeping things flowing nicely into his nappy, so much so that daddy had a little gag during cares.

Yesterday I plucked up the courage to ask the Nursing Unit Manager and Nursing Coordinator if we could break some rules and allow a little cuddle with grandma and grandad before they set off to the homeland. Turns out I shouldn't have worried so much, as they are aware of our situation and were more than happy to allow for this, as long as regular hygiene protocol was undertaken (you can be sure of that when mummy is around). So this morning, before heading to the airport lovely cuddles were had by all. A very special moment.

Posted with Blogsy

The breast day ever

Today little man is 11 weeks old. We are feeling like we are almost on the downhill slide to making our way home....or at least across the hall to HDU. I'm grateful we live so close to the hospital, as I'm sure trekking a further distance to the hospital, there and back daily would add to our exhaustion (as we experienced in Westmead). Some of the parents come from far places like Cronulla, Liverpool, and several from the Central Coast. The twins from Liverpool were transferred back last night. I assume like most other hospitals, they can only care for babies 34 weeks plus, and I figure they are at or around that age now. They were also moved to make way for the triplets that arrived last night... It's now a full unit again with four new admissions yesterday.

Little man had his dressing removed over the weekend, so can now enjoy his much loved tummy time again. The scar is barely visible and just looks like a wrinkle from his nappy. Mummy doesn't even get a churn in her tummy every time she looks at it...only when she thinks about it.

Jensen has started back on his vitamins today to help with his liver. His blood test has shown his liver to still be functioning a little abnormally. This, the doctors think is from prolonged use of TPN, and now he has had another week or so on it for the operation, it has shown up again. It hasn't got any worse, but hasn't got any better either. Also the antibiotic that he has been taking for the candida can influence the levels of liver function in a blood test, where it is actually the antibiotic giving a false reading rather than the liver. Due to the most recent test for candida coming back clear, they have now ceased the antibiotic. When bubs have any intravenous lines in they are also given this antibiotic as a precautionary measure as fungal infections are so easily passed on. Now that he has had the long line removed (as of yesterday, because he is on full feeds again), he has also stopped the precautionary dose.

Calories have begun again today, although in the form of an oil rather than the fortifier. As this caused a blockage in his bowel, the doctors have had to come up with other ways of fattening him up quickly. As he can't have the fortifier, he has to start having phosphate. This helps with bone density, development, and calcium intake as the oil doesn't contain this like the fortifier does, and preemies need a little assistance in this regard.

I have left the breast for last....oh sorry I mean the best. Yesterday little man had his first little go at breastfeeding. Apparently he was a born natural. The first session for the little ones is mainly a familiarisation session where they have a little nuzzle and lick just to get them interested and understanding that's where the good stuff comes from. But no not Jensen. He latched on and started sucking his little heart out, impressing all the nurses. Again today he had a good go but was a little fidgety as he was hungry and a little tired I think. He performed well in front of the lactation consultant who says he'll have no trouble feeding. His mouth and tongue were in the right position when feeding, which a lot of bubs don't figure out for a few weeks, especially at his gestation. Don't we just have ourselves such a little superstar in so many ways....

Posted with Blogsy