Baby Georges story

[robj20]

Those of you from the Dadsnet thread will know the story but it gets lost in there so thought i would make a standalone thread as there seems a lot of interest. Sorry this is very long and its a bit of a jumble, during it all i lost all concept of time.

The wife and I have had a very unlucky time in the last few years, we got pregnant in late 2016 but lost that one at about 8 weeks. We got pregnant again mid 2017.

Fast forward to the 16th Feb 2018 it’s about 10pm and the wifes waters go. Now at this point were both panicking as its 5 weeks early.
We make our way to St Marys where she is admitted and i have to leave straight away as no guys are allowed on that ward after a certain time, now we had our niece with us so me and her head home and do our best to sleep.
Morning and i’m taking the niece to her mums and then heading to the hospital asim allowed in at 9am.
Straight after dropping the niece off i get a call and it’s the hospital saying my wife has been rushed into the delivery room and to do my best to hurry up.
So i speed up a little, those that know the hospital know parking is a pain, i run from the car to the ward. Knock on the door and am asked if i’m the husband and that im just in time.
Walk to the wife and the head is already out few seconds later and he’s born.

Now the tale reallys starts, he’s put on the wife briefly when the midwife takes him away suddenly over to the corner. Lots of things happening, floods of doctors and people arrive, we can hear things like “sats dropping” “intubate” “try again”
At this point a doctor comes over to us and tells us his oxygen levels are dropping and he's not breathing properly so they need to put a tube into his lungs to get oxygen in.

Next minute all hell breaks loose, it’s rare you see doctors lots of doctors all looking panicked and running but they did and it scared us like crazy. They were so preoccupied we were left alone with the midwife and didn’t know what was going on. Another load of people came crashing in with a big incubator this time, but not one of those normal ones this reminded me of that thing they put ET in.
We were told at this point he was being taken to the newborn intensive care unit and that was it he got carted off.

Some time later a nurse came back and told us which room he was in, my wife was now in a fit state but we first needed to go to her ward room. From there i pushed her up to the NICU, and we got to reception and signed in.
There was a strange atmosphere here, everyone looked sad, the odd person crying, not a nice place at all.
We ventured through past lots of rooms, Nursery looked nice enough, then came HDU (high dependency unit) not too bad either, babies in cots and the odd incubator.
Then we came to the rooms we were in ICU, past a couple that were nice and quiet, Room 4 was us, looked through the door and it was manic in there, this one incubator had screens around it and packed with doctors, nurses and specialists.
At this point we were still stood outside shocked and feeling lost, a nurse came out and asked if we were Georges parents and told us briefly what was happening.
We were taken to Georges side well as close as we could get there was no room for us.
One of the doctors then approached us and started explaining what was going on.
Basically his lungs weren’t working properly and he was now on a ventilator and getting a few drugs put into him.

So fast forward some more after things had calmed down and the parents came to see their grandchild.



At this point the doctor told us that although the ventilator was working what was confusing them was it was needing to do more and more of the work for George, he would stabilise and then his oxygen levels would start dropping again so they had to turn the oxygen and ventilator up higher. He was now on a great many drugs, mind boggling amount. The nurse was getting so frustrated with it, obviously you only have so many needles into you, and she was having to figure out which drugs could share the same line. When the doctor would arrive and prescribe another drug and she had to start all over again.

 

[robj20]

Sunday
Anyway i had to leave now and went home, and came back first thing the next morning. We were sat in the wifes ward room when a nurse burst in and said we needed to go see George.
We got to the room and noticed a strange noise, a noise no one experiencing it forgets. We were told he had maxed out the standard ventilator and was now on an oscillating ventilator and warned that looking at george while on this might be distressing, we were also told they were taking to multiple hospitals around the country to see if anyone had seen this before and they offered ventilation settings and such to see if those worked better.
Basically the oscillating one pumps and sucks the air in and out of his lungs very fast so he looks like his being tortured, physically shaking or bouncing around, horrible to see.
As time went on that day it became apparent even this wasn’t working, so out came the Nitric Oxide as well. We were told this was the last option there was no higher level of ventilation. His SATS sat steady at 100% for a couple of hours then shock as it dropped to 99 then 98 and so on but slowly. They were trying lots of drugs now, both sides of the bed had multiple racks with them on.
Mid afternoon on Sunday we were asked to go to a meeting with a couple of the doctors and other staff. They told as that it wasn't working and to be ready for the worst, the head of the unit told us that there was only one other thing he could think off but they didn't offer it there, he'd already started phoning around Alder Hey, Glasgow, one in London none had room, the nearest one with room was in Sweden.
This option was not something to take lightly but he thought it could work, the next difficulty was that George want actually eligible for this operation he was too young and under weight. It had never been done on a premature baby and not under 6lbs he was both of those i think he was about 5.2lbs. The operation isn't even to fix what ever George had but he thought it was the last option that could give them time to see what it was.
In the end our doctor pleaded with them and they said yes so off to Sweden was the plan.

It was also agreed i could stay on the ward Sunday night as things were changing by the minute.
Late Sunday evening we were called to the ICU as he was being sent straight away. It came all of a sudden so we ran down the corridor and stood outside his room, no one was allowed in the room or the corridor outside at this time we were actually asked to leave but another nurse that recognised is came over and told us that at the last minute Alder Hey had accepted him after Georges doctors had said he probably wouldn't make it to Sweden.

I phoned my mum and for the first time in a very very long time i cried like a baby, how does a little baby deserve this.

So here we met the NWTS team (i constantly look out for these ambulances now) North West & North Wales Paediatric Transport, they are a specialist ambulance unit that's basically staffed with two specialists and a doctor, plus driver.
I've never seen anything like it, they came in and took over immediately there focus and speed was amazing to see.
As they were leaving my wife burst into tears a nurse said don't worry they are the best. But it wasn't that she thought the incubator looked like a coffin.

So we had a last chat with the St Marys staff, our car reg was given so it could stay in the car park as long as needed i was told not to drive so we got the sister in law to take us with my mother in law as well.

We got to Alder Hey at late Sunday early Monday.
Lots of people have seen this place, however we were in for a shock we struggled to find where we were going and the place was closed virtually no one around. PICU we needed, we spotted a sign and followed it, got to a door with an intercom someone eventually let us through. Now this bit is nothing like the rest of the place its a long straight corridor that's featureless, off to the side you have what they call pods, first up is the burns unit, then you have HDU, then lastly ICU where George was. We walked in one of the doors and a nurse pushed us out and asked who we were there to see.
She took us to a small room with a sofa and a few chairs in and a jug of water.
About 20 minutes later a doctor arrived and talked is through what the operation was and what it entailed, ECMO it's called, Extracorporeal membrane oxygenation.
He was too have an opening made into his neck and his blood would be taken out of one artery round a machine and back in the other side, it would take over the function of both his heart and lungs in the hope that his lungs could recover from what ever was stopping them working.

I don't know if any of you have signed one of these consent forms but it's horrible, it was scribbled out obviously in a rush. Main points being the huge list of possible complications. The bit the i keep seeing in my nightmares is the bit under “Reason for operation” scribbled was the words “save life”
So i signed it and off he ran.
The next few hours were a blur apparently it took them about 3 hours, but they got him on the machine.

Mother in law and sister inlaw went home at that point and we went in to see George.
On entering this room it was like walking into the enterprise bridge. Immediately in front off you was a desk with people say at it with tonnes of computers and monitors along it, in an arch beyond that were bays with silly amounts of equipment around each bed.
He looked terrible i started regretting signing the form. It's something I've only recently even told my wife.



Anyway we got told we could sleep in the staff on-call room for that night and the next day we had a room at Ronald McDonald House.

 

[robj20]

Monday
We woke up and immediately went to see George.
Doctors were still there that we saw last night, we meet the two nurses looking after him today and started taking to them.
Other doctors arrived and walked is through the plan, lots of tests and scans basically.
After a few hours they knew what was wrong, PPHN, Persistent pulmonary hypertension of the newborn.
Basically a little valve that is shut while baby is in mum stops blood going around the lungs, this normally opens when you’re born. It was mostly still closed.
What they couldn't figure out was why. Cue all sorts of blood tests for everything they could think off, lots of questions about both of our health and lifestyle, where we live, was there any mold in the house, the questions were non stop.
Even to this day they don't know what caused it.

Anyway to speed things along George was on a ventilator but on a special mode that just keeps the lungs moving and damp.
A few times a day a guy would turn up and put a manual bag on his lungs and feel how stiff they were, to start with they barely moved. As the week went on they started to loosen up and repeated ultrasound scans were showing the valve had opened.
Now with ECMO you really don't want to be on it for long clots can form in the machine and if they find their way into the body it can be game over, the nurse looking solely after the ECMO machine constantly checked the pipework with a torch for clots and you could start seeing them after a few days, she said it’s a balancing act between allowing clots and how much Heparin you give.

A week or so later
So after a week they clamped the machine and changed the mode on the ventilator. He sat at 80%, but they wanted him off ECMO as soon as possible his Heparin was getting too high and too many clots were forming in the machine. So they added on Nitric Oxide again and he went up to 100% where he stayed, so they decided to carry out another operation and remove the ECMO lines.

Success, his lungs were now able to sustain him with the ventilator.
This was the first time since he was born we felt good. But it was short lived, they did an ultrasound of his head to check as he was so little the main concern was bleeding because of the Heparin. The next minute lots of conferring between the ultrasound operator and the doctors, then he's getting carted off for an MRI so they can have a better look as they are not happy.
About an hour later they returned and it was bad, as bad as it gets a grade 4 on the whole left side of his brain. The scan image is permanently etched into my mind the whole left side was just black which means fluid. The neurosurgeon explained how it’s not a case of operating as there was nothing left to operate on.

The doctors were gutted you could see what they were about to say. They didn't think he would make it much longer.
The wife just looked expressionless, totally blank like she wasn't there.
I felt numb i could see the doctors talking but couldn't hear them.

It was tough trying to sleep that night at any moment expecting a phone call telling us the worst. But it never came.
To everyone's amazement he made it through the night and that next day, more scans showed the bleed had stopped, but his head size was going up, you have these two ventricles in your head that have spinal fluid in them, the one on the left was blocked by blood clots.

It was said that now the best case was right side paralysis and no speech or understanding at all. Inside i thought to myself, what have i done signing that bit of paper, what’s the point, i certainly wouldn’t want that.

The neurosurgeon tried to explain how it was a very easy operation but i just can't imagine any brain surgery is easy. So off he went again and Mr Mallucci put a EVD external ventricular drain in, a tube in his brain dripping spinal fluid into a container.
This was to stay in until it either stopped dripping or they replaced it with a shunt.



The focus now was weaning him off some of the drugs and the ventilator,it was set to a mode that if it noticed him trying to breath it helped or did nothing but would not allow him to go too long without.
He was slowly doing more for himself and now off the Nitric Oxide as well.

 

[robj20]

Week Two
They decided he no longer needed to be at Alder Hey and we could return to St Marys, it was just a case of waiting for a bed.
We got the call late one evening while asleep at Ronald McDonald House, hurry up they said the NWTS team were already there getting him ready. They certainly don’t give you much notice.
So off we ran, its a fair distance from the house to the hospital as well, since they rebuilt it, you actually have to walk through the abandoned old hospital.
Same as last time, the team had totally trashed the place their sole focus on getting George stable and ready to go.



Back at St Marys now in the ICU again, maxed out on the ventilator but only because he's sedated still from the transport.
The next day me and the wife are unhappy, they do things so differently at St Marys we ask why his ventilator is on the mode it is as at Alder Hey they had him on such and such (BIPAP) they said that’s not possible i actually argue about it as i hate being called a lier.
They now have him on SIMV, the difference being one allows George to breath and the other does it all for him, so in our minds a huge step backwards.
I eventually found a photo on my phone showing it and they finally believe me enough to call Alder Hey and ask for the settings.
They changed all his drugs as well which George didn’t like and had a fit, i went a bit mental at this point and simply asked why when he came to you from Alder Hey in such a good position have you changed everything and put us back to square one.
Alder Hey used Fentanyl but St Marys don’t like that so changed to Morphine, lots of other things as well, Ketamine to something else. He was having withdrawal so these new meds needed to be dosed a lot higher to combat that.

So back where we were when we left now and George is starting to take a fair few breaths for himself.

Week Three
The EVD in his head was scaring us now, not because it was there but more because no one on ICU at St Marys knew what it was, me and the wife had to explain it to them. Eventually they called up someone from the Pediatric neurology department and they knew what it was but it wasn’t the exact setup they use.
The wife requested that the nurse be told not to mess with it and the nero guy agreed and said he would deal with that so he started seeing George twice a day to check the drain.
(You basically have to keep the end of the drip level with Georges head too high it doesn’t work, too low and it pours out of his head)
A few times the nurse would raise Georges bed and forget to adjust the drain.

After a few more days the Neuro guy was happy with the drain and head measurements so decided he didnt need it anymore, which was great news.
Out that came and we were now allowed into HDU as he was just on a few meds to keep him comfortable and a bit groggy.

In HDU the goal was getting off the ventilator
He’s now opening his eyes and moving a little, the great news is that he’s moving both his legs and left arm, though the right arms not so much.
Another bonus was we could now hold George which was amazing holding him for the first time many weeks after being born.



We get off the ventilator and onto CPAP which he didnt need for long until he went onto Optiflow, which i think if i remember rightly just pushes oxygen in. The last step is just a nasal cannula with oxygen.

Finally on just a cannula were moved to the nursery where they want to start feeding him he doesnt do well, and is refered to SALT (Speach and Language Therapy) they scan him while feeding and some of the milk is finding its way into his lungs.
So they thicken his milk and he does fine.

Roll on a few days and the wife and i are feeding him every meal by bottle, the nurses however choose to still use the feeding tube, its quicker and easier.

We cant leave until he feeds for 48 by bottle, this never happens as every morning we come to the hospital to find the tube back in because the hospital policy is to feed at set time, George doesnt want that so they put it down the tube and reset the 48 timers. The wife and i remove the tube and do all his daily feed by bottle at his own times.

We complained at this point and asked them to sort it out. They didn’t though.

 

[robj20]

Local Hospital
Just a normal baby ambulance this time.
Were now at our local hospital Bolton. On arrival we talk to the nurses and doctor and mention about the feeding they say they will see how it goes but at the minute will follow what St Marys were doing.
Morning, we arrive and the nurse that spent the night with George says how he loved his bottles, he had ripped the tube out himself and rather than put it back in she tried a bottle.
So he’s now on bottles all the time. Oxygen is still being given via the cannula but is going down all the time.

He got stuck on 0.01 oxygen at the hospital for over a week, there is no lower setting so its a struggle going from 0.01 to nothing. The decision is made to send us home on oxygen, so we have to have tanks delivered and put around the house and a few portable ones so we can still venture out.

Home at last
The day of going was was very nerve wracking, those of you with children must remember being kicked out of the hospital, now imagine that with a sick baby attached to a bottle of oxygen. The outreach team actually followed us home and made sure we set everything up at home correctly. From then on they came to the house everyday for about a week to check his sats and we were left with a monitor, but were advised to not use it unless we felt we needed to. He went home on 0.1 oxygen i think it was, the lowest you can have at home, but 10 times what he was getting at hospital.

Over the next few weeks the outreach team came less and less to the point of once a week, where they started taking him off the oxygen for longer and longer periods of time. Up to the last one where he had to go overnight without, i can tell you now both me and the wife just stared at the SATS monitor the whole night, it just sat at 100% with the very odd dip to 99%. He passed and they said leave him off, but keep it with us at all times, after checking him for a few days and still at 100% they arranged for the oxygen to be removed.

And so ends the initial drama.

Since then he has come on leaps and bounds, beating all expectations. We even got in touch with his cardiac surgeon at Alder Hey and he was amazed at his progress, one of his great successes and so happy he took the gamble on the surgery despite everything saying he'd die during that initial operation.

 

[Sankari]

Wow, that was a wild ride. Congratulations OP, and thank God for the NHS!

 

[Thekwango]

jesus, as a father that is a harrowing read mate. no idea how you and the wife are coping, you are both stronger than i would be. thoughts, prayers and every positive feeling i can muster are with you all.

EDIT: just saw you added pics....he's a gorgeous wee thing. it must have killed you both to see him hooked up like that - it's shredding me just looking at the pics, can't imagine (nor do i want to!) what it would be like to witness in real life.

 

[robj20]

And here we are just last week hes now 13 months old.




He has Physio team that come to the house every 4 weeks, still sees his consultant from Bolton every 6 weeks. A dietitian and SALT every 8 weeks.
He was discharged by Ear Nose and Throat, and discharged from Neurology.

Three people that i cant thank enough.
Mr Conor Mallucci his Neuro surgeon at Alder Hey.
Mr Ramana Dhannapuneni his cardiac surgeon at Alder Hey, without him taking the risks we wouldn't have George.
Dr Simon Power his NICU consultant who listened to us about what George needed rather than what facts and figures said. Amazing guy that would happily roll his sleeves up and change a nappy or play with the babies if he had the time. You dont see many at that level that do this.

Also Ronald McDonald house for giving us a home for two weeks for free while in Liverpool.
We have since donated a few hundred to them from friends and family. Plus my employer donated £1,000 as well.
https://ronaldmcdonaldhouseliverpool.org.uk


Speaking of my employer they were amazing, full pay and as much time off as i needed in total i think i was off work for about 3 months.

Loves his full english, especially black pudding and plumb tomatoes.


Likes a bit of takeaway as well, onion rings, chips and kebab meat. But refuses to use his right hand.

 

[Steedie]

Man that was a tough read...

Can I give you a hug? I need one as well after reading that

So, so happy to see those 13 month pics, what a gorgeous little man! And to see that he's surpassing all expectations, what a little fighter. Bless him, and you both. You're both incredibly strong to go through that

 

[byeo]

Jesus Christ, I'm sat here at my desk close to tears. I'm so glad it was a happy ending, honestly I was expecting the worst. George looks so cute, he's been through so much already in his life. I hope you and your wife are doing fine too, I can't imagine how hard it was for both of you. Me and my girlfriend are expecting our first in November and I prey to God everything goes ok.

Thank you for sharing such a personal story with a happy ending.

 

[Bickaxe]

Even after reading that I can not begin to imagine what it was like.
I can only echo the above and wish you and your family all the best for the future.

 

[dowie]

Glad you had a happy ending there OP

 

[Mrs Seabiscuit]

What a read, I am glad he is doing so well now.
One thing that strikes me from maybe the way its worded. Is how little explaining of what was going on you guys were given. When I used to work on a NICU even in an emergency situation a nurse would always fully explain to parents what was happening. There was always loads of nurses so this may have been why i saw that.
Did St Mary`s offer you an apology as it sounds like they needed too!
Wonder why i am unable to see pics!

 

[B1scu1T]

My word that is quite a little fighter you seem to have, overcome some incredible odds by the sounds of it. Can't even begin to fathom what that must have been like but very happy to hear things are going well. Unfortunately I cant see any of the pics on my end, not sure why.

All the best for the future mate, hopefully the rest of the adventure can return to the original script.

 

[robj20]

What a read, I am glad he is doing so well now.
One thing that strikes me from maybe the way its worded. Is how little explaining of what was going on you guys were given. When I used to work on a NICU even in an emergency situation a nurse would always fully explain to parents what was happening. There was always loads of nurses so this may have been why i saw that.
Did St Mary`s offer you an apology as it sounds like they needed too!
Wonder why i am unable to see pics!

It was always explained to us what was happening, just not always before it happened if you know what i mean, sometimes they just didn't have time.

Were actually thinking about legal action against St Marys, during that first Friday night Saturday morning the wife told them many times she thought she was giving birth, they just asked if it was her first because she wasn't showing enough pain.
Well eventually she demanded to see a doctor and when he checked he could see the head.

Later talks with people, one of the possible causes of PPHN is too long in the birth canal.

I will host the pics somewhere else, google photos must not work very well for some reason.

 

[Dis86]

Can't see the pics here

 

[Dup]

As the father of a healthy near 6 month old, that was a tough read which has culminated in a couple looks of "what's up with him" from a couple colleagues.

So glad it worked out for you and this is a great message to anyone in challenging hospital circumstances that if you're intimate with the details of somebodies care don't be afraid to voice any concerns as it literally could make all the difference, especially when multiple trusts are involved.

I look forward to more positive updates and hope you're enjoying parenthood now things are more positive

 

[robj20]

Can't see the pics here

Should work now i hope.

As the father of a healthy near 6 month old, that was a tough read which has culminated in a couple looks of "what's up with him" from a couple colleagues.

So glad it worked out for you and this is a great message to anyone in challenging hospital circumstances that if you're intimate with the details of somebodies care don't be afraid to voice any concerns as it literally could make all the difference, especially when multiple trusts are involved.

I look forward to more positive updates and hope you're enjoying parenthood now things are more positive

I will keep it updated, i had some good support in the Dadnet thread while i was actually going through all this last year, was good to talk about it.

 

[cheesyboy]

Phew, emotional ride just reading it!

Glad it's come to a happy conclusion. A terrible thing to have to go through.

 

[robj20]

Phew, emotional ride just reading it!

Glad it's come to a happy conclusion. A terrible thing to have to go through.

Its as happy as can be, we still have potential behavioural and learning difficulties, he might struggle to walk, he might not be able to do much with his right arm.
He also has sever reflux to the point his meds for that are maxed out.