So the past couple of days have been a bit hectic, hence no blog entries for a while.
As you know little man wasn't well and ended up coming down with an infection in his bowel and a distended tummy on Saturday night/Sunday. On Monday morning Jensen was transferred to Westmead children's hospital to be close to the surgeons should he need his hernia operated on. At that stage it was a precautionary measure, as Dr Mary had a lot of trouble reducing it overnight.
I called Phil to let him know NETS were coming to pick Jensen up and before I knew it they had arrived. Phil hadn't even turned up yet. We knew it was a long process so thankfully daddy turned up in time. He wasn't handling being touched very well at first, but had the best of the best doctor with him upon transfer. Mummy rode shot gun in the ambulance with Jensen in his transportation device in the back with the doctor and nurse. I've never been so nervous in a vehicle (nor have I been in an ambulance) before.
We arrived at the hospital, shortly followed by daddy, and were set up in the NICU there, called Grace Ward.
The surgeon came to look, and was able to reduce his hernia so said there was no need for surgery. Phil and I breathed a sigh of relief. They were just going to keep an eye on his tummy. Next thing we knew the head surgeon came to see Jensen and bam ... he was on his way to theatre. The surgeon seemed very blasé about the whole thing which made us feel more at ease and we were both strangely calm. It was just a case of looking at his bowel through an incision in his abdomen if necessary and while they had him there were going to fix up the hernia. A two hour procedure by a very confident team. Phil and I said 'see you in a little while' to our Jensen and began the wait. We sat outside and prayed to our angels and looked strange, I guess kissing our phones (Jensen screen savers). We then sat in the car biding the time.
At around 10pm we hadn't heard anything. It had been 2 hours. We headed back into the ward and were told he didn't leave for theatre until 9pm. So we went and waited nervously in the parent lounge. I got the call at 11pm to say that the surgery was complete, he was fine, and on his way back to the ward. The surgeon had then got called into emergency surgery so we waited another hour or so for her to come and gives us the details. She said they didn't go into the abdomen as his bowel looked ok and they believed the hernia to be the issue not NEC. The hernia had been reducible initially, but in theatre there was a bowel loop under a knuckle of bowel that had not been reducible, otherwise known as an incarcerated hernia. This is what has been causing him pain. The surgeon tucked up the bowel and closed the hole. The hole is there to allow the testicle to drop, and in Jensen's case, this is where a bowel loop had snuck through. Now that the hole has been closed (his testicle has come through) the hernia shouldn't return. They also found some old milk curd obstructing his colon, so the surgeon massaged it down and we now wait for it to pass through naturally. This could be from the fortification of his milk, and would be the major cause of his distended tummy, and discomfort. NEC stands for Necrotizing Enterocolitis which is when part of the bowel dies and needs to be removed. It can be common in preemies as they are required to commence feeding before their gut is mature enough. The doctors have mentioned this at times of other infections, being that it could be the issue, luckily for us, it wasn't.
We said goodnight to our little super star and headed home for a short sleep. Such a long day.
Tuesday, 31 March 2015
Posted with Blogsy
Sunday, 29 March 2015
Mummy's birthday
Today hasn't been the best birthday I've ever had. We left little man last night with quite a bloated little tummy. The air from the CPAP machine causes them to have a 'CPAP' belly, which is why they put his gastric tube up to allow the air to be burped out. Because his tummy is so full of air it puts pressure on his lungs and he has to work harder to breathe, and starts misbehaving a little.
We got a call through the night to say they had taken 65 mls of air from his tummy and given him an X-ray of his bowel, which showed a pocket of air in one of his bowel loops, which essentially needs to be farted out. They started antibiotics as his infection level had increased and he is now on two lots of antibiotics to catch the infection should there be one. They have stopped his feeds for now and put him back on TPN. Yesterday he had increased his milk to 18 mls two hourly due to his large weight gain..he weighed in at 1330grams. No cuddles today sadly.
We met a few friends and family for a birthday lunch which was lovely, but I wasn't my happy self which I apologise to everyone for. When we returned to the hospital, he had been returned to the ventilator, which we knew was a possibility. This will just make everything easier for him and give him a little rest while his tummy sorts itself out. With this, his oxygen has come down to 22% and he is looking a better colour this evening. He may need another blood transfusion in the morning to boost his blood levels a little due to taking so much of it last night and today. He has had an arterial line put back in to take bloods and a couple of cannulas in his arms for the antibiotics and intravenous fluids. He has had another wee bag put on his pecker to test his urine and has had a swab taken of his skin, just to rule out every possible infection. Poor little tike has had quite the busy day.
I have been very spoiled by friends and family today and am lucky to have such wonderful people in my life. Daddy and Jensen even made a secret trip to Tiffany's with grandma and grandad for a beautiful bracelet and necklace for mummy's birthday. When we arrived this morning there was also a card in Jensen's crib for me, with his little footprints inside (wondering how they got this done without me noticing, and how I didn't see his little red feet after footprints).
Thank you to everyone for sharing their time and well wishes for my birthday today. I love you all and look forward to many happier days ahead with you all very soon. Most of all thank you to Phil for trying to make my day a happy one, loving me and spoiling me. I love you darling.
We got a call through the night to say they had taken 65 mls of air from his tummy and given him an X-ray of his bowel, which showed a pocket of air in one of his bowel loops, which essentially needs to be farted out. They started antibiotics as his infection level had increased and he is now on two lots of antibiotics to catch the infection should there be one. They have stopped his feeds for now and put him back on TPN. Yesterday he had increased his milk to 18 mls two hourly due to his large weight gain..he weighed in at 1330grams. No cuddles today sadly.
We met a few friends and family for a birthday lunch which was lovely, but I wasn't my happy self which I apologise to everyone for. When we returned to the hospital, he had been returned to the ventilator, which we knew was a possibility. This will just make everything easier for him and give him a little rest while his tummy sorts itself out. With this, his oxygen has come down to 22% and he is looking a better colour this evening. He may need another blood transfusion in the morning to boost his blood levels a little due to taking so much of it last night and today. He has had an arterial line put back in to take bloods and a couple of cannulas in his arms for the antibiotics and intravenous fluids. He has had another wee bag put on his pecker to test his urine and has had a swab taken of his skin, just to rule out every possible infection. Poor little tike has had quite the busy day.
I have been very spoiled by friends and family today and am lucky to have such wonderful people in my life. Daddy and Jensen even made a secret trip to Tiffany's with grandma and grandad for a beautiful bracelet and necklace for mummy's birthday. When we arrived this morning there was also a card in Jensen's crib for me, with his little footprints inside (wondering how they got this done without me noticing, and how I didn't see his little red feet after footprints).
Friday, 27 March 2015
A special day
Daddy had today off work so had some cuddles in the morning while mummy did a few jobs. And mummy wants cuddles on Sunday this week instead.
Grandma and grandad Jackson have arrived!
After what seemed like a long wait in the airport arrival lounge, a take away pizza on the way home and a quick shower and change we headed straight to the hospital to see little man. He had a fresh hat and chin strap put on this evening for the special occasion. Lots of loving stares and stayed for cares, so had his bottom on show and his little face without his mask briefly. He even woke up to say hello and welcome to grandma and grandad.
After what seemed like a long wait in the airport arrival lounge, a take away pizza on the way home and a quick shower and change we headed straight to the hospital to see little man. He had a fresh hat and chin strap put on this evening for the special occasion. Lots of loving stares and stayed for cares, so had his bottom on show and his little face without his mask briefly. He even woke up to say hello and welcome to grandma and grandad.
Thursday, 26 March 2015
32 weeks
In all the excitement of little man's weight gain, I forgot to mention he was 32 weeks yesterday. Which means we are half way and now have 8 weeks to go until his due date. This is also when they do the eye check that he had yesterday.
He had a blood test this morning just to check for any infection as his oxygen requirement had gone up briefly this morning. The doctors get a bit nervous because he had been so sick with infection previously. All clear results though thankfully and he has now had the cannula which was put in yesterday for the transfusion, removed (amid protest from little fella).
Kangaroo cuddles for 3 1/2 hours today with mummy and the doc says mummy needs to cuddle him all day as his oxygen drops by 10-12% and he saturates high, meaning he is very happy. Daddy's turn tomorrow as his golf game has been postponed.
One more sleep until Grandma and Grandad Jackson arrive...
Kangaroo cuddles for 3 1/2 hours today with mummy and the doc says mummy needs to cuddle him all day as his oxygen drops by 10-12% and he saturates high, meaning he is very happy. Daddy's turn tomorrow as his golf game has been postponed.
Wednesday, 25 March 2015
1234...........grams!
Jensen weighed in at 1234 grams this morning.....much more than we were hoping for, the little champ. Maybe he'll be 1300 by the weekend...
Due to his weight gain, his milk has increased to 16 mls two hourly which he is enjoying and should have a hand in some more rapid weight gain.
Little fella had a blood transfusion today as his haemoglobin levels had gotten low again. This is very common with preemies as they have blood taken so often, and they can't produce new cells as quick as everyone else. He's looking very pink this evening and as though he's been out in the sun a little too long.
He's also had his first eye check today with the eye specialist. He is having a follow up next week to determine the maturity of his eyes. Because he is so premature his eyes are immature and at risk of developing a displaced retina. This is where the blood vessels behind the eye don't stop growing due to being in oxygen, as well as being underdeveloped, and can grow over the retina and cause blindness. The doctor will usually examine him every 2 weeks to keep an eye on the blood vessels' growth and in the case of them looking like growing over the retina, laser eye surgery is required. This is also done within the NICU, so if it is something Jensen needs, he won't have to be transported to another hospital. Of course we are hoping this is not the case with our little super star. Apparently this is what happened to Stevie Wonder. He was born premature and had a lot of oxygen pumped into his incubator which caused his retinas to detach. Of course over the last 65 years since his birth the amount of research, medical developments and knowledge available has led to vast improvements in oxygen monitoring and created awareness of the need to keep an eye on the eyes.
Mummy had more cuddles today, in my gown bra less, which is much more comfortable for the both of us. The structure of my maternity bras don't allow them to sit flush on the chest, so besides catching remnants of my lunch, they also stick up, and Jensen ends up hovering above my chest. Now he just settles in in-between my boobs and zonks out for 3 hours. The nurses even commenced his blood transfusion while he was having cuddles today as he loves them so much, and is so settled.
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Strike a pose
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Little fella had a blood transfusion today as his haemoglobin levels had gotten low again. This is very common with preemies as they have blood taken so often, and they can't produce new cells as quick as everyone else. He's looking very pink this evening and as though he's been out in the sun a little too long.
Mummy had more cuddles today, in my gown bra less, which is much more comfortable for the both of us. The structure of my maternity bras don't allow them to sit flush on the chest, so besides catching remnants of my lunch, they also stick up, and Jensen ends up hovering above my chest. Now he just settles in in-between my boobs and zonks out for 3 hours. The nurses even commenced his blood transfusion while he was having cuddles today as he loves them so much, and is so settled.
Tuesday, 24 March 2015
Pardon me
Another quiet day for little man.
Cuddles with mummy again today, which we love so much. His oxygen drops low and he saturates high during cuddles, and seems to remain the same upon transfer back into his crib.
He's been burping a lot lately from the air pressure of the CPAP. His gastric tube is attached to the air hole on the top of his crib which allows him to push the air from his tummy and release it with a gurgling noise through his roof...sometimes it's so loud I can hear it from the other side of the room. He's a bit refluxy too.
He did another poo missile today all over the nurse's hand and down past his feet....very funny and quite messy...better out than in though. Perhaps mummy has to lay off the spicy food for a while to stop him from shooting poos all over the place.
Immunisations are due this week, but are not administered while babies are on CPAP of 7. This is something they will think about in a few more weeks. Immunisations are the only thing that are not age corrected and should be administered at birth age.
The nurse in charge of discharges came to visit today. We will spend time with her in Low Dependency more so than now, but she says we should be across the hall in 4 weeks or so, and even more exciting said we would be home before Jensen's due date. I am not counting on this as I don't want to be disappointed and only want him home when he is fully and absolutely ready. She said all he needs to be doing is 3 suck feeds a day to be coming home. He can come home on oxygen and with a gastric tube if necessary.....this thought is a little scary. The nurses will come to our house and set up the oxygen tanks. We will have a little one in a back pack for outings. The nurses will come to visit us, and check we are all doing well, especially if Jensen is still very little.
I have been doing lots of research on prams lately and today we have found the one we want which we can customise to our needs. We will have our own unique little pram for our own unique little boy. We've also been looking into car seats, cots and other requirements, there is so much to choose from and has become quite a frustrating and arduous task. We have narrowed our search down a little and have almost found what we want.
We had a little chat to Valentina's parents this evening, and seems she'll be ready to go home in 2 weeks....how very exciting. We will stay in contact with Claire and Nick and Jensen and Valentina will become little friends. Phil is actually playing golf with Nick on Friday.
Jensen is again neighbourless this evening with the last new neighbour moving across the hall tonight. This baby was massive at 2 kilos and the same gestation as Jensen. Makes me think he may have been around that size should he not have decided he couldn't wait to meet the world. Weigh in again in the morning, hoping for a 60 gram plus weight gain...he looks bigger and very much longer today.
Not long now till Grandma and Grandad Jackson arrive....only three more sleeps. We are very much looking forward to their visit and having them around for a few weeks...
Cuddles with mummy again today, which we love so much. His oxygen drops low and he saturates high during cuddles, and seems to remain the same upon transfer back into his crib.
He did another poo missile today all over the nurse's hand and down past his feet....very funny and quite messy...better out than in though. Perhaps mummy has to lay off the spicy food for a while to stop him from shooting poos all over the place.
Immunisations are due this week, but are not administered while babies are on CPAP of 7. This is something they will think about in a few more weeks. Immunisations are the only thing that are not age corrected and should be administered at birth age.
The nurse in charge of discharges came to visit today. We will spend time with her in Low Dependency more so than now, but she says we should be across the hall in 4 weeks or so, and even more exciting said we would be home before Jensen's due date. I am not counting on this as I don't want to be disappointed and only want him home when he is fully and absolutely ready. She said all he needs to be doing is 3 suck feeds a day to be coming home. He can come home on oxygen and with a gastric tube if necessary.....this thought is a little scary. The nurses will come to our house and set up the oxygen tanks. We will have a little one in a back pack for outings. The nurses will come to visit us, and check we are all doing well, especially if Jensen is still very little.
I have been doing lots of research on prams lately and today we have found the one we want which we can customise to our needs. We will have our own unique little pram for our own unique little boy. We've also been looking into car seats, cots and other requirements, there is so much to choose from and has become quite a frustrating and arduous task. We have narrowed our search down a little and have almost found what we want.
Jensen is again neighbourless this evening with the last new neighbour moving across the hall tonight. This baby was massive at 2 kilos and the same gestation as Jensen. Makes me think he may have been around that size should he not have decided he couldn't wait to meet the world. Weigh in again in the morning, hoping for a 60 gram plus weight gain...he looks bigger and very much longer today.
Not long now till Grandma and Grandad Jackson arrive....only three more sleeps. We are very much looking forward to their visit and having them around for a few weeks...
Monday, 23 March 2015
8 weeks
Today little man is 8 weeks old.
He's had another quiet day apart from a blood test this afternoon to make sure it's nothing metabolic causing his jaundice. Dr Mary is very happy with him and has noticed a big change since last time she was on. Oh and cuddles with mummy.
After a couple of quiet weeks in here, the place is now busy with lots of new arrivals and parents and relatives wandering around. As we are long term residents here, I have become quite possessive about the place and get cranky when people disturb my routine or the order of the place. I like to express in the parent lounge in the morning while I watch the news, I do not like it when other people think they can come in and use the facilities at this time...... I don't like it when people can't read the 'parents of babies in NICU only' sign in the parent lounge and congregate their whole family in there. I don't like people using our room as a short cut to theirs, I don't like making small talk comparisons about babies. In fact the first conversation was had just yesterday with Jensen's adjoining neighbours after 6 weeks. It's not a place to make friends. I get cranky with people who don't wash their hands when walking into the unit, when it is clearly signposted. I don't like it when people treat Intensive Care like their lounge room on their phones sipping a cup of coffee. I don't like it when people talk about us on the phone saying how they're in a much better position than us. I don't like being asked questions. I don't like seeing the fear on a new mum's faces. I get upset with nurses who are complacent and don't do their research. I don't like the pitiful puppy dog faces I get from the social workers, I don't like being told it's amazing your son has survived all he's been through at 23 weeks gestation. I don't like having to be here at all.
I do love lots of things about this place though. I love the care my son is receiving. I love the kind and caring nurses. I love the amount of training and education the staff participate in daily. I love the amount of thorough information we receive. I love that Jensen is so dear to so many nurses' hearts. I love that the nurses look out for me and Phil. I love that it is so close to home. I love that we can come whatever time we like. I love that it doesn't feel like a hospital. There's a lot more that I love but most of all I will love it when we can walk through those heavy doors with our little boy in our arms.
He's had another quiet day apart from a blood test this afternoon to make sure it's nothing metabolic causing his jaundice. Dr Mary is very happy with him and has noticed a big change since last time she was on. Oh and cuddles with mummy.
After a couple of quiet weeks in here, the place is now busy with lots of new arrivals and parents and relatives wandering around. As we are long term residents here, I have become quite possessive about the place and get cranky when people disturb my routine or the order of the place. I like to express in the parent lounge in the morning while I watch the news, I do not like it when other people think they can come in and use the facilities at this time...... I don't like it when people can't read the 'parents of babies in NICU only' sign in the parent lounge and congregate their whole family in there. I don't like people using our room as a short cut to theirs, I don't like making small talk comparisons about babies. In fact the first conversation was had just yesterday with Jensen's adjoining neighbours after 6 weeks. It's not a place to make friends. I get cranky with people who don't wash their hands when walking into the unit, when it is clearly signposted. I don't like it when people treat Intensive Care like their lounge room on their phones sipping a cup of coffee. I don't like it when people talk about us on the phone saying how they're in a much better position than us. I don't like being asked questions. I don't like seeing the fear on a new mum's faces. I get upset with nurses who are complacent and don't do their research. I don't like the pitiful puppy dog faces I get from the social workers, I don't like being told it's amazing your son has survived all he's been through at 23 weeks gestation. I don't like having to be here at all.
I do love lots of things about this place though. I love the care my son is receiving. I love the kind and caring nurses. I love the amount of training and education the staff participate in daily. I love the amount of thorough information we receive. I love that Jensen is so dear to so many nurses' hearts. I love that the nurses look out for me and Phil. I love that it is so close to home. I love that we can come whatever time we like. I love that it doesn't feel like a hospital. There's a lot more that I love but most of all I will love it when we can walk through those heavy doors with our little boy in our arms.
Sunday, 22 March 2015
The weekend
Jensen has been a popular little man today with lots of visitors. Grandma and grandpa James turned up during cuddle time with daddy, so mummy made them wear a mask as she is becoming neurotic and paranoid about germs of any sort.
We were lucky enough yesterday to be allowed a cuddle each. Phil was out at a job (for one of Jensen's nurses), and I was here on my own not cuddling Jensen as it was daddy's turn, so I asked if we could ever have more than one cuddle. 'No' was the answer, but before I could say much the nurse asked if I wanted one, as Jensen loves cuddles so much.....of course! I changed into my cuddle gown ASAP. The nurse said we had to keep it a secret because the rule is one a day, and was only letting us because she was doing a double shift. Little man was very happy with 5 hours of cuddles in one day.
This morning little man weighed in at 1088 grams, so his feeds have now gone up to 15 ml two hourly. Next weigh in is Wednesday morning. Hopefully he should average around 100 gram weight gain each week. No other changes today. The doctors are still with Jensen for a minimal amount of time on rounds, which pleases us greatly. Phil timed them yesterday.....just 55 seconds.
The nurse with Jensen today decided to dress him, when I saw her doing this I told her we had an outfit for him... He's almost too big for it now, but he still looks super cute in it.
Today is Aunty Sally and Cousin Tegan's birthday and we wish them both a happy and fabulous day and thank them for all of their messages of love and support. We can't wait for them to meet their new littlest relative.
This morning little man weighed in at 1088 grams, so his feeds have now gone up to 15 ml two hourly. Next weigh in is Wednesday morning. Hopefully he should average around 100 gram weight gain each week. No other changes today. The doctors are still with Jensen for a minimal amount of time on rounds, which pleases us greatly. Phil timed them yesterday.....just 55 seconds.
The nurse with Jensen today decided to dress him, when I saw her doing this I told her we had an outfit for him... He's almost too big for it now, but he still looks super cute in it.
Friday, 20 March 2015
The cutest thing
Another quiet day in the NICU for little fella. We love quiet days and hope for them often. Today is his first day of no steroids for a while so his oxygen levels have been swinging up and down a bit. Dr Shah mentioned yesterday this would possibly happen, so I'm not too concerned about it.
I had a big 3 hour cuddle today. I've had the sniffles for a few days so stayed away from cuddles this week until today, just in case. It's Phil's turn over the weekend and hopefully we can continue on with daily cuddles from here on. Jensen loves cuddles so much his oxygen is 10% less during cuddle time, he also loves being wrapped, and although the nurses don't really like to do it as it is hard to see their chest movement, some have done so to calm him down when he's cranky and it works a charm. He didn't even wake when being transferred back to his crib from cuddles. He looks so cute all wrapped up, like a little bug.
The cutest thing I have ever seen is a Jensen sneeze. He did about 8 of them during cuddles today. They come out of nowhere and go straight up his snorkel I guess with his mask on. I assume the pressure from the bubbles in his snorkel tickles his nose at times. That, or either he takes after his mumma and is just a big sneeze head.
Thursday, 19 March 2015
A hefty little fella
He did the biggest poo Claire (the nurse educator) had seen in a very long time...it was double the quantity, weighed almost as much as the little fella, and stunk out his crib....this is apparently blog worthy, as there is not much else to report...
Wednesday, 18 March 2015
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....
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..
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....
Tuesday, 17 March 2015
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..
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.
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..
Monday, 16 March 2015
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.
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.
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.
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| Fast asleep on mummy's bosom |
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.
Friday, 13 March 2015
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..
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..
Thursday, 12 March 2015
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.
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.
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.
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| Help! These are not my pockets!! |
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