The below are my updates to friends through Freddie’s life, mostly just for my records really as it is all a blur and i need to get some memories back. Ill tidy it up at some point. Feel free to ignore. I’m not actually sure all the dates are right from the early part as BK doesn’t split it by date – will have to try and work it out from his notes if i can get them.
Baby boy in scbu. Perfect idyllic textbook easy birth but he just would not breathe at birth. No explanation. I just cant make him wake up. No apparent suggestion it was birth related. He had a fine heartbeat which kept going throughout. Is pink and on respirator but just asleep. Born 12.30. Scbu say he is doing better than they expected a couple if hours ago. Has taken some breaths but no enough to be on his own. Helen has been in and we have cried a lot. I have no idea what will happen but I havent held him yet and have missed his first day.
Baby freddie. From much earlier. I think he is looking better now but still not woken. Feel a little more positive.
Freddie been off ventilator since midnight and breathing alone but fitting so now drugged. Problem seems to have been wonky blood acids Which unfortunately for my conscience was probably due to low oxygen at end (hopefully) of delivery. But midwife says that really nothing was making them think that was a problem other than moments before he was born when actually he was crowning. It is all such a shock. He can squeeze my fingers and has a suck reflex and flinched at light but hasnt yet woken and drugs will keep asleep till at least midnight now. Hoping for a miracle. Girls are so worried. Im okay if I am with him but not so good when away. All seems so ironic that of all of them he was the one that wasnt an emergency. This hospital is amazing. So relieved we are here not at pboro. Visiting restricted for some reason. But not sure I can bear to get their hopes up anyway. They have photos and am sending them lots of updates.
Better news. Brain ultrasound is all clear. No bleeds or swelling or bits missing. Very nice dr is very optimistic. Having a little oxygen As has got tired and a bit spluttery. Words optimistic about good recovery now being used. Having some light therapy as a bit yellow and kidneys and liver a little affected. But not causing worry. Plans to give a few mils of ebm later. Very odd to be expressing again but gives me am extra focus.
Evening has been one of very mixed emotions. Cuddle was lovely and he opened both eyes and looked at me and seemed to settle and even root..But within an hour he was being started on a 3rd medication to control fitting that I can barely even detect. So now he is out cold again. So hard to see where the path forwards is or find something to focus on. Still have no idea if I am going to make it home with a living baby nevermind a healthy one. Bloody fucking April. I knew this was going to happen. Am just beside myself trying to work out how to tell the girls we have either no baby or a disabled child to cope with. Am trying to console myself that no one seems to think it was a stupid decision to vbac and if it had occurred after a section I would have kicked myself. I just want a cross and waily baby to look after not an empty bedroom.
Have had some sleep with the help of a nice midwife and a sedative. Max is being allowed to stay. This place is just amazing and the staff are brilliant. Going back to see him in a minute. Max is with him. So frustrating to have my parenting reduced to nappy changes and lip wetting. Wish milk would come in. I think the trend is upwards but it is hard to hear the good when the more cautious is so potentially terrifying. Cant tell you what all you love and thoughts mean to us. Docs seem to feel fitting is not dreadful but needs to be controlled so it doesnt aggravate whatever the problem is. Would have been worse if it had begun immediately but it was about 12 hrs in. Gut feeling is, as it was throughout pregnancy, that this was always going to happen and is something about him and his body. Just hoping hell overcome it.
Cuddle. Ward round more positive today. I am just not cut out for uncertainty or waiting for things to play out. Back in just air now.
Doing quick update after having several hours sleep. Finally managing to remember to take care of myself. Have lost all of Friday afternoon From my memory which is a bit disorientating to say the least. Im doing okay. Not blaming self at all. I know one will ever believe me but I had a total premonition that this was going to happen and I really think it would have happened no matter what birth he had. In fact, although I know his blood results were a big big too lie at birth, I think that it might just have been him and if I had had a section electively, I would be wretched about having dragged him out. All the people in the room were stunned it happened.
So I promise Im whole and if the worst occurs, Freddie has given me something I needed so badly. BUT. His fitting seems to be stopping, if it was ever really there and he seems to be trying to fight through the meds now. Am seeing eyes more often. Hoping to give him more milk later. It was too much for him yesterday. Gave him too much to think about. Just off to see him now I have slept and express. Hoping he will still be looking good.
Had a nice couple of hours with him. He has been in just air for 24hrs now and is fine. He is moving his Tongue and has hiccups. Apparently hiccups could count as abnormal movements but I just dont buy that. He was a hiccuppy bump and if he was a normal babe then hiccups would be normal. I think it is fine. Feeling more positive again. He looks so beautiful.
Leaving myself notes here really but Freddie stopped the lipsmacking yesterday and opened his mouth. He breathes through that lots and also has started to clear his own throat of mucous. He does have an apnoea ? Monitor on now as he has been holding his breath but never enough to set it off and his SATS have stayed good even with the little gaps.
Todays doctor feels full recovery unlikely and that he falls into a category that will be somewhere between learning difficulties and some Form of hopefully mild crebral palsy. He is categorised as grade 2. Even Grade 3 can do well so to say the future is unclear is to put it mildly.
Very long day with some big wobbles that have hit both of us very hard. All feels like too much right now. Cant compute that I just cant Make this beautiful little boy be okay and do as he is told. So hard.
Update first. Freddie is still in the highest dependency bed but nothing is actually keeping him alive in terms of vital functions. He is doing all that himself but he is heavily drugged with very slow acting anti convulsants so being carefully monitored. He hasnt needed oxygen for days or had a SATS blip for days. But he is almost entirely timeless and unresponsive because of them and the time when he did have tone feels a long time ago. Plus it is hard to sort out in my head what was normal and what there was that they felt was fitting and abnormal movement.
So the possibility is that without the drugs he would be a sick boy indeed. Theyve started weaning him off the second drug; the third, which knocked him out totally, was only given once and should be nearly out now, but not necessarily completely. They may stop the second one tonight, they may not. Even if they stopped them all today, it would take 7 days to be drug free.
He appeared to have a short burst of fit like movements last night when his new dose was due but if stopped without help and hasnt repeated. Hard to know what to make of that. Was very hard on max. The fits could do more damage so need controlling but to know who he is and what he is able to do, he needs to be off them. They say babies who feed alone by day 7, if drug free, do best, but he wont be drug free. He us tolerating 3mls of milk every three hours and that should go up today and they will try to follow my supply which is doing better. But if I am honest, there has been nothing else new or good for a day or two. He is just utterly floppy and asleep.
On the upside he has had long cuddles with max and skin to skin with me and responds by being calmer and his sats get even better. MRI very shortly which terrifies me. I think they are less optimistic than they were but I could be wrong. As he wakes up, I can try feeding. If nothing else, I do have experience in making awkward babies feed.
They plan to swap to a brainwave test at addenbrookes. MRI would show us damage but brainwave will poss give us more of a sight of where we are going. Wont be that quick. Maybe by Friday.
He is going in the morning if no emergencies happen. Am not going with him as would have to ambulance follow and he had to go to frans hospital in the same little box as Fran used for her first ever operation. Feels all a bit too confusing and I will just drip. So I will pop home and spend some time with josie who is not speaking to me and being dreadful, kicking sisters and refusing to communicate with people. Poor girl. Her worst nightmare; she doesnt have her baby, she isnt the baby anymore and the baby has totally taken mummy away.
They have relented and said the girls can come and see him just for a few minutes. Then I will pop home with them, even if it will hurt To leave him. That way I can do a bit of smoothing at home, get the off to gym etc and dry any tears.
Just so low today. Not sure I have the strength for whatever comes next. Freddies drug withdrawal not going well and he is fitting again. Paed has given us a very honest assessment and it is that they think the outlook is very poor. In fact, she feels if might be unlikely he will wake up. But tempered as ever with caution as things can change. Once I asked directly, she agreed there might be a place for considering whether keeping him alive in the event of a crisis was the right thing. I am surprisingly okay, max is in bits. He fell completely in love and is frightened I will fall apart again. But if I am honest, I have already walked the lost baby path and at least I could grieve for Freddie. Have decided not to give girls more honest assessment until weekend after their show. Things could still change I guess. I feel far more desperate at the thought of a disabled child and somewhat just want it all over. And oh, my poor girls 🙁
EEG not really that bad. No dead spots (there is a more intelligent word for that but I cant remember it) and no suppressed fitting activity At the time which would have been very bad. And some normal activity of ordinary background brainwaves which could be all he has and could be drug suppressed. Still not waking up really but more normal moving and less twitching currently. I put my nipple slightly in his mouth and he licked off the milk and I think further back it triggered a suck. I think the paed was a little more positive although she would prefer physical evidence. She was slightly less inclined to discuss the grimmer sides but careful to imply there could be not much to him either. But. Just but. I have to help him give it his best shot.
Am not sure I believe in good news any more. But it feels like a teeny weeny peak. Just frightened it will give the girls too much of a lift. Rocked my core to come home and find both amelie and josie had already encompassed the possibility he might die.
Freddie fitted badly again yesterday evening. We have reluctantly agreed to one more dose of drugs but I think we have both lost hope now And have made it very clear we are not prepared to continue to dope him up only to be shattered again every few days. It isnt fair on any of us or him and I can see this is heading for a long and painful descent into where S is. So after the weekend we have told them we want to discuss the gentlest way of letting nature take a hand. My poor boy. My poor girls. And poor max.
Visiting is open now. We have a difficult conversation to have with the girls and then we will follow their lead and take them. The bottom of the stairs has a pile of presents they chose for him and it is just breaking my heart. They have finished their show now and we just have to find the words and the The worst thing is, he breathes unaided so there is no question of him just being allowed to slip away. It is going to be harder than that.
They dont know. No kne knows anything. He us going to have an MRI and a lumbar puncture which will show the extent if the damage and if there are any obvious syndromes or metabolic reasons. Given the delivery was no mite than mildly last minute hm is he okay? ish they have questioned me pretty closely about the pregnancy. Everytime he has a fit he then has a long bout of hiccups. He was a very hiccupy bump. Theyve taken my deep misgivings about the pregnancy surprisingly seriously and now I think back he tended to be very kicky, then very hiccupy and then asleep for long, long periods of time. I think he fitted then. It is possible without drugs his chest will congest and is heart will not cope. Or he might be awake. Or somewhere between. But their duty if care means keeping him comfortable. Weve asked for no more drugs and no resuss, certainly no resuss drugs but short acting drugs if he fits to keep him out of distress. But unless the tests show a clear indication of massive damage it problems they are slightly tied to their oaths to do no harm. Which is fair enough. I want a miracle but if I cant have that, I would like it to be over for us all as soon as possible.
Have told the girls now that we are not expecting much but still hoping for a miracle. But been honest as we can. Fran in bits; she already knew. But they all want to see him and asked to go and get to know him. At which point the nurse rang to tell me he has briefly opened his eyes, made a whimper and gas started to dribble rather than his spit just pooling in his throat. I think Freddie may be my youngest child to make me roll my eyes and exclaim bloody kids! how much of a rollercoaster could this possibly be?
Well. Took the girls to see him and that has helped them. Weve moved mattresses to all sleep together for now. And I went in to see Freddie And the combination of a suppository and a poo provoked such outrage in him that he opened his eyes and stared at me for a good five minutes. So now I have seen his eyes and I can take a lot of peace from that. One seemed rather unfocused and off centre but one was looking straight at me. No doubt tomorrow will have a crashing fall but that is a different day and for now I have seen his eyes and I can hold on to that memory.
Going to post a photo in a moment because I just need to show him off but dont read too much into it. It has come at the cost of a big fit In the night and the milder drugs only just controlled it. But we just had to know what is there underneath them.
He was like this for maybe 90 minutes this am. He is just so beautiful. If only he could get his little body under control.
Well. I hardly know what to say. Freddie had another long period of open eyes this evening, which included grumbly grunting, looking at me very normal movements with only a bit of a tremble in his hand, trying to clear his own mucous and even a bit of a go sucking on my finger. Nurses all agreed it was real and i took film for Max. He fell asleep very naturally afterwards, having had a tube feed and although he then got hiccups, he didnt seem to fit. He definitely responds to my voice and i think he tracked me a little. The hiccups didnt make him fit. Have left as really dont want to spend the night hovering over him waiting for another problem. Have told them to protect him and give him something if he has overdone it and needs a break. Fully expecting a big downer tomorrow as that seems to be how it goes but cant help having some hope there is a person in ther now, even if not a whole person.
Havent been called in overnight but just about to pump and then pop down. Really annoyed as I got in such a pickle that j didnt pump often enough and my milk has quartered do doing a massive fake pumped growth spurtalike to try and pull it back. I hate expressing. It is so odd to be doing it again.
Another day, another dip. Back on oxygen with a congested lung. Is fighting so hard and not fitting. Feel so bad for him and am suddenly So aware of how much I want him and how much I have got to come to terms with a normal future being very unlikely. He is just so lovely. But not fitting at mo. V cross as nurse did not call when oxygen went in. Had a paddy about it as she promised. Trying to be positive. He was still awake and okay this morning even after oxygen but then got too congested. At least I am learning to expect the dips.
Congested lung equals mucous or breathed in milk or infection or slightly more brutally, it has effectively collapsed. Mucous is s huge problem for him. He has quite a receding jaw, which I could tell on the 4d scans, and swallowing is hard. Actually they checked him for cleft today and I think Pierre robin syndrome is on their minds. It has always been a family possibility given we have a family mixed bag of midline faults. Lungs, I think, essentially easier to deal with so long as he doesnt have a crisis. No temp anyway.
We have done some tummy sleeping and it has worked. We just have to keep turning him. I did notice the chin on the 4d scan and wondered but didnt say it as thought people would roll their eyes. Heigh ho. Cant believe this exact time 4 years ago I was in such awful turmoil and dilemma as well. If brutally honest, I still cant decide which situation worse. What a crap thing to think.
I am so sorry to tell you that little Freddie slipped away this morning at about 9.20am. It was a very peaceful end, curled up in a big Double bed in both our arms. We made the decision to withdraw his oxygen after lots of chemicals in his blood changed and it became clear something in him had just failed. He died within a few minutes so I am sure we made the right choice for him and all of us. The doctors all agreed. Feel very sure that my instincts all along were correct and something was fundamentally wrong with him. I think he woke up to let me know it was not his birth that caused it. Am deeply relieved it is all over. Home with girls now and able to focus on them. Could not have asked more of the hospital; they were wonderful.