Saturday - 03Mar12
Minor update to what is described below. In fact the diapragm isn't really a single sheet: it's two. So it's the left diaphragm that's missing and that has since been replaced. There is a risk of scoliosis (as he could grow lopsided as the new diaphragm is pinned to his ribs on the left side) and also chest deformities for the same reason.
Overnight it was one of firsts. The first of three poohs on Saturday (this is good because it means that his internal organs are working), a small vomit and a cuddle. Clearly all the tubes and ventialtion are still attached and it's the nurses who left him out if his cot onto your lap, but proud moments for the Mother and me.
He does have his fathers's stranglers hands and prehensile feet (big ones too). Although they are both looking rather like pincushions much to the Mothers' distress. He went into surgery with an arterial line in his wrist and a central (long) line through the umbilicus. He didn't come back with the longline (they had to move the existing one for the surgery). This is turning out to be a problem and probably causes the Mother more distress than me. No doubt they expected that putting in a new line would be relatively easy and could be done back on the ward. In practise this is turning out to be trickier than normal. What this means is that all the drugs and the food have to go through small veins on the periphery which is less than ideal to say the least. The Mother is deeply unhappy about this, not just for the short term (Dylan is now a pincushion) but also the long-term difficulties and what sort of state his veins will be in given that he will be needing blood tests etc for a long time yet.
It's also interesting what bother the Mother being medical, and what bothers me who isn't. Being in a hospital is normal for the Mother as are all the alarms and beeps that are a continuous background especially in NICU. They really get to me, I don't like being kept in. On the other hand, the lack of long-line doens't really bother me (other than the whole pinchusion effect), I accept (more) the medics word that actually it's ok - not ideal but perfectly ok.
Friday Update Pt 2
Dylan got back from surgery at about 1700. We got to speak to the surgeon about an hour later. She seemed pleased with the way the surgery had gone. They had had to put a patch in as there was virtually no diaphragm to speak of which is what we were expecting. What this means is that Dylan will breathe only through the muscle effect of his lungs as his new diaphragm is non-muscular. The stomach, liver, bowel were all shifted back into their appropriate place and there was no cause for concern. They also took out his appendix. This is mostly because they can't really control where it may end up which would only cause confusions in later life should anyone try to find it.
He was on air only when he returned but became unhappy so they increased his oxygen intake and put him on morphine. There were also problems with his saturation levels: these were cleared up by change of position and clearing out tubes and mouth (he can't swallow at the moment).
Overnight they need to put in a line into the central circulation system in order to keep feeding him drugs. For the surgery they use lines that go into smaller vessels: this allows the belly area free to be cut into. Speaking of which, I am faintly disappointed with the scar. I was expecting flip-top baby. How's he going to attract the girls now? Everyone knows chicks dig scars ...
And yet again, we wait. To see what happens next, whether he's strong enough to recover from the surgery, whether anything gets infected and whether his lungs will do the job and he can learn how to breathe.
Friday Update Pt 1
All change its 1310 and Dylan is going to surgery. Less notice than we had thought. About 30 minutes in this case. Even the nurse looking after him was surprised. He'll be at the BCH for 1330 with the surgery taking place this afternoon. Hopefully he'll come back ok later on this afternoon or this evening.
Friday - 02Mar12
He opened his eyes properly. Even at 730 in the morning. Clearly he doesn't take after his mother.
In reality, the Mother has been expressing every 3hours, so comments like that will get me into serious trouble. The reason for the early start is that we needed to meet the surgeons.
What is the collective noun for a bunch of surgeons? Anyway in they all walked (about 10 of them) to discuss whether baby Dylan is ready for surgery. Ha! Only ten of them?! Where's the film crew....
Unfortunately moments earlier one of the surgeons had noticed that Dylan doesn't like his Dopamine altered and reacts to changes in levels quite quickly. Things like that make them nervous and it's best not to do that to them. After the briefest of conversations, out they swept onto the next patient.
The consultant surgeon then returned with the consultant neo-natologist to have a further conversation with us about what they were going to do and when. They're going to open him up, move everything back into the abdomen checking for twists and defects and fixing where appropriate. They'll either suture close the defect in the diaphragm or patch. If the patch, then they use Permacol which is pig-skin (or a derivative) which they think works better than artificial patches.
They don't entirely know when it will happen: the number of drugs needs to reduce and he needs to be off either the Dopamine or the Dobutamine. We'll also get little warning on exactly when it will happen. Saying that, the decision on whether the surgery will be performed will be taken in the morning or at lunchtime each day. Certainly we are expecting it to happen over the weekend and the fact that the surgeons have marked Dylan with incision points - clearly anatomy is not their strong point and neither is knowing their left or right. Hmm, perhaps I should retrain as a surgeon! One of the first decisions I have had to make as father is to give my consent for the surgery. It's an easy decision to make, but certainly one that gives plenty of concern.
We are very aware of how lucky we are. Not in just in terms of how well Dylan is doing but also the fact that we are in a position where we can both be around to support him without worrying about the bills too much. That and we do have a fantstic network of friends and family whose support has been magnificent and invaluable. One of the facts of the ward is that there are sicker babies within NICU, for families who are in very different situations to us, which is both very sobering and humbling.
We have also benefited from a number of charities all of whom do fantastic work and we hope to be able to support them in some way once the initial problems are over.
Thursday - 01Mar12
Dylan has given his father his first heart attack. It was time for the evening clean-up and nappy change. Oh, and story time of course! Today he hasn't been weeing very much and his belly was distended. It appears that that's because it was full of wee. 55ml of wee which in a 5 and a half pound baby is really rather a lot. That'll explain yesterdays swelling! Unfortunately for him, we found this out by putting in a catheter. His second in four days. He's also on a new drug which replaces the morphine and the atracurium which sedated and paralysed him. He's quite lively on the new drug - just muscle spasms. Anyway, he didn't appreciate the catheter and woke up. Which is BAD. Because he starts to try and breathe for himself. And he can't. He went blue, heart rate plummeted, and all we could do was to try and calm him so that he went back under again. Thankfully he did and was then given more drugs to make sure he didn't try that again.
Nappy has been put on really badly (by me).
On a much more positive note, this is just a blip. A dip in the rollercoaster. Because he's continuing to do very well. The drain used to empty his belly of gases has been removed and the remaining drugs are reducing slowly. The Mother and I need to get up and acroos to the ward for 7:30am in order to meet the surgeons. Hopefully they will operate tomorrow (Friday) but that does depend on space and his progress. It's probably better that the operation happens sooner rather than later as the longer he's connected to tubes the greater the likelihood of infection. That's just the way it works.
Also, we can really start to relate to him - we can touch him, comfort him. No hugs for Dylan yet, but it is a start.
We have been asked to leave the NICU accommodation. This is because there is space in the Ronald McDonald house and the NICU room is better used by a family whose baby is doing worse than ours. We may get moved back after the surgery as then it'll be our baby who's doing badly.
Wednesday - 29Feb12
Arrive back at the hospital in the morning to find that Dylan is still doing really well. Now he's off the nitrous gases and onto 25% oxygen which is the level that they would want him to be on if he went into surgery. Again the other drugs are also coming down in level. He's certainly a fighter!
The plan at the moment is that the drain will be removed tomorrow (Thursday) with surgery planned for Friday or Saturday depending on how well he continues to do, availability of surgeons, bedspace etc. The surgery will take place at the childrens hospital so he will be moved from NICU for the surgery and then brought back. He'll be away for about 4 or so hours. We won't be able to be with him.
There continues to be difficulty with accommodation. Nominally we would be allocated a space in hospital accommodation; however there are only a limited number of spaces shared between NICU and the childrens hospital. One of the aims of the Cots for Tots Grand Appeal is to help with this by building more parent accommodation for NICU patients. By 5pm we haven't heard anything so I book a superior room at The Clifton House Hotel (it's larger than a standard and includes a sofa - plenty of space for the Mother to relax and feel comfortable in) and walk down to pick up the key. Having done that, I then get told that actually there is a room. The hotel is very good about it. There is nothing to be done it's just the nature of the beast - rooms are very dependent on parents thinking that they will want them and the patients doing well or badly.
I get back at 6:30'ish to help clean Dylan up and change his nappy. Doesn't seem quite as happy as he was - he's sore from the catheter and there is an abdominal swelling and his eyes are looking puffy. Yes, we are paranoid.
We're waiting for the rollercoaster to begin - which might never happen - but is likely. Certainly after the surgery it is expected that he will be a much sicker baby and the four days after the surgery will be nerve-wracking.
On a more positive note the Mother is producing milk - which is then frozen - and although it's only a room we are currently only down the corridor from Dylan
Tuesday - 28Feb12
Dylan continues to do really well. He's been taken off the oscillator and is now on standard ventilation.
The Mother on the other hand is doing less well. She was meant to have been discharged but given she essentially collapsed whilst seeing Dylan in the afternoon and had to be wheeled back to the ward in a chair they agreed, somewhat reluctantly, that perhaps she wasn't ready to go home just yet.
The Mother's best friend arrives from London for a flying visit and BTB finally makes it home ater a sterling four days effort. She has been amazing.
As Dylan was doing well and didn't really have anywhere to stay, I decided to go back to Taunton. Unfortunately the World doesn't stop turning, there are always bills to pay and things to sort. Or in this case, a car to empty! I must have been looking pretty bad for the guy in the petrol station to comment that I was looking rough. Gee thanks!
Monday - 27Feb12
Finally, we got a night of sleep. No way near enough, but starting to claw back the cost of the last few days. Obviously the Mother has a greater need for sleep than me!
It's clear that the ward are unhappy with the thought of me staying an extra night. Although I have friends who are more than willing and happy to put me up, they are 10 to 15 minutes away by car and that's just a little too far to be comfortable at the moment.
BTB had stayed at a very nice hotel over night and I met her in town as, because we had a Dylan in our lives, the Mother needed a few things. Like bras and tops that allowed - if not feeding - at least access for pumps. Clearly I needed a treat too. So I bought myself a new jacket. Clearly I deserved it!
Dylan was doing really well and the oxygen and nitrous levels were dropping at a sufficient rate that there was already talk of taking him off the oscillatory ventilator and replacing it with a more standard form. This would be a requirement for surgery as Dylan would be transported to a different hospital.
The IM visited the Mother to see how she was healing and provided information and products to help with the healing process.
Because there was a difficulty with me staying on the ward and we had made an error of timings with BTBs trains, BTB and I stayed at The Clifton House Hotel. Top notch. Very comfortable, quiet and with a rather fine breakfast!
The grandparents got to see Dylan in the afternoon. We had wanted them to visit earlier rather than later on the off-chance that it would be the only opportunity for them to see him. One set did manage to lose their car in Bristol which took a while to locate. On the plus side, I have found more places to park in Bristol that I would never have found otherwise!
Due to infection risk, the number of tubes and some weird story involving finger tip loss and woollen gloves, Dylan can't get to meet Gaston the giraffe - a present for the Mother - or recieve the socks and hat made for him by BTB and the Mother's mother.
Minor update to what is described below. In fact the diapragm isn't really a single sheet: it's two. So it's the left diaphragm that's missing and that has since been replaced. There is a risk of scoliosis (as he could grow lopsided as the new diaphragm is pinned to his ribs on the left side) and also chest deformities for the same reason.
 |
| First cuddle for Dylan and the Mother |
He does have his fathers's stranglers hands and prehensile feet (big ones too). Although they are both looking rather like pincushions much to the Mothers' distress. He went into surgery with an arterial line in his wrist and a central (long) line through the umbilicus. He didn't come back with the longline (they had to move the existing one for the surgery). This is turning out to be a problem and probably causes the Mother more distress than me. No doubt they expected that putting in a new line would be relatively easy and could be done back on the ward. In practise this is turning out to be trickier than normal. What this means is that all the drugs and the food have to go through small veins on the periphery which is less than ideal to say the least. The Mother is deeply unhappy about this, not just for the short term (Dylan is now a pincushion) but also the long-term difficulties and what sort of state his veins will be in given that he will be needing blood tests etc for a long time yet.
 |
| Aww, he's got hold of my finger |
It's also interesting what bother the Mother being medical, and what bothers me who isn't. Being in a hospital is normal for the Mother as are all the alarms and beeps that are a continuous background especially in NICU. They really get to me, I don't like being kept in. On the other hand, the lack of long-line doens't really bother me (other than the whole pinchusion effect), I accept (more) the medics word that actually it's ok - not ideal but perfectly ok.
Friday Update Pt 2
Dylan got back from surgery at about 1700. We got to speak to the surgeon about an hour later. She seemed pleased with the way the surgery had gone. They had had to put a patch in as there was virtually no diaphragm to speak of which is what we were expecting. What this means is that Dylan will breathe only through the muscle effect of his lungs as his new diaphragm is non-muscular. The stomach, liver, bowel were all shifted back into their appropriate place and there was no cause for concern. They also took out his appendix. This is mostly because they can't really control where it may end up which would only cause confusions in later life should anyone try to find it.
He was on air only when he returned but became unhappy so they increased his oxygen intake and put him on morphine. There were also problems with his saturation levels: these were cleared up by change of position and clearing out tubes and mouth (he can't swallow at the moment).
 |
| Dylan's scar |
And yet again, we wait. To see what happens next, whether he's strong enough to recover from the surgery, whether anything gets infected and whether his lungs will do the job and he can learn how to breathe.
Friday Update Pt 1
All change its 1310 and Dylan is going to surgery. Less notice than we had thought. About 30 minutes in this case. Even the nurse looking after him was surprised. He'll be at the BCH for 1330 with the surgery taking place this afternoon. Hopefully he'll come back ok later on this afternoon or this evening.
Friday - 02Mar12
He opened his eyes properly. Even at 730 in the morning. Clearly he doesn't take after his mother.
 |
| "Oh my God who are you?!" |
What is the collective noun for a bunch of surgeons? Anyway in they all walked (about 10 of them) to discuss whether baby Dylan is ready for surgery. Ha! Only ten of them?! Where's the film crew....
Unfortunately moments earlier one of the surgeons had noticed that Dylan doesn't like his Dopamine altered and reacts to changes in levels quite quickly. Things like that make them nervous and it's best not to do that to them. After the briefest of conversations, out they swept onto the next patient.
The consultant surgeon then returned with the consultant neo-natologist to have a further conversation with us about what they were going to do and when. They're going to open him up, move everything back into the abdomen checking for twists and defects and fixing where appropriate. They'll either suture close the defect in the diaphragm or patch. If the patch, then they use Permacol which is pig-skin (or a derivative) which they think works better than artificial patches.
 |
| Arrows where the surgeons mark the operative site |
They don't entirely know when it will happen: the number of drugs needs to reduce and he needs to be off either the Dopamine or the Dobutamine. We'll also get little warning on exactly when it will happen. Saying that, the decision on whether the surgery will be performed will be taken in the morning or at lunchtime each day. Certainly we are expecting it to happen over the weekend and the fact that the surgeons have marked Dylan with incision points - clearly anatomy is not their strong point and neither is knowing their left or right. Hmm, perhaps I should retrain as a surgeon! One of the first decisions I have had to make as father is to give my consent for the surgery. It's an easy decision to make, but certainly one that gives plenty of concern.
We are very aware of how lucky we are. Not in just in terms of how well Dylan is doing but also the fact that we are in a position where we can both be around to support him without worrying about the bills too much. That and we do have a fantstic network of friends and family whose support has been magnificent and invaluable. One of the facts of the ward is that there are sicker babies within NICU, for families who are in very different situations to us, which is both very sobering and humbling.
We have also benefited from a number of charities all of whom do fantastic work and we hope to be able to support them in some way once the initial problems are over.
Thursday - 01Mar12
Dylan has given his father his first heart attack. It was time for the evening clean-up and nappy change. Oh, and story time of course! Today he hasn't been weeing very much and his belly was distended. It appears that that's because it was full of wee. 55ml of wee which in a 5 and a half pound baby is really rather a lot. That'll explain yesterdays swelling! Unfortunately for him, we found this out by putting in a catheter. His second in four days. He's also on a new drug which replaces the morphine and the atracurium which sedated and paralysed him. He's quite lively on the new drug - just muscle spasms. Anyway, he didn't appreciate the catheter and woke up. Which is BAD. Because he starts to try and breathe for himself. And he can't. He went blue, heart rate plummeted, and all we could do was to try and calm him so that he went back under again. Thankfully he did and was then given more drugs to make sure he didn't try that again.
Nappy has been put on really badly (by me).
On a much more positive note, this is just a blip. A dip in the rollercoaster. Because he's continuing to do very well. The drain used to empty his belly of gases has been removed and the remaining drugs are reducing slowly. The Mother and I need to get up and acroos to the ward for 7:30am in order to meet the surgeons. Hopefully they will operate tomorrow (Friday) but that does depend on space and his progress. It's probably better that the operation happens sooner rather than later as the longer he's connected to tubes the greater the likelihood of infection. That's just the way it works.
Also, we can really start to relate to him - we can touch him, comfort him. No hugs for Dylan yet, but it is a start.
We have been asked to leave the NICU accommodation. This is because there is space in the Ronald McDonald house and the NICU room is better used by a family whose baby is doing worse than ours. We may get moved back after the surgery as then it'll be our baby who's doing badly.
Wednesday - 29Feb12
Arrive back at the hospital in the morning to find that Dylan is still doing really well. Now he's off the nitrous gases and onto 25% oxygen which is the level that they would want him to be on if he went into surgery. Again the other drugs are also coming down in level. He's certainly a fighter!
The plan at the moment is that the drain will be removed tomorrow (Thursday) with surgery planned for Friday or Saturday depending on how well he continues to do, availability of surgeons, bedspace etc. The surgery will take place at the childrens hospital so he will be moved from NICU for the surgery and then brought back. He'll be away for about 4 or so hours. We won't be able to be with him.
There continues to be difficulty with accommodation. Nominally we would be allocated a space in hospital accommodation; however there are only a limited number of spaces shared between NICU and the childrens hospital. One of the aims of the Cots for Tots Grand Appeal is to help with this by building more parent accommodation for NICU patients. By 5pm we haven't heard anything so I book a superior room at The Clifton House Hotel (it's larger than a standard and includes a sofa - plenty of space for the Mother to relax and feel comfortable in) and walk down to pick up the key. Having done that, I then get told that actually there is a room. The hotel is very good about it. There is nothing to be done it's just the nature of the beast - rooms are very dependent on parents thinking that they will want them and the patients doing well or badly.
I get back at 6:30'ish to help clean Dylan up and change his nappy. Doesn't seem quite as happy as he was - he's sore from the catheter and there is an abdominal swelling and his eyes are looking puffy. Yes, we are paranoid.
We're waiting for the rollercoaster to begin - which might never happen - but is likely. Certainly after the surgery it is expected that he will be a much sicker baby and the four days after the surgery will be nerve-wracking.
On a more positive note the Mother is producing milk - which is then frozen - and although it's only a room we are currently only down the corridor from Dylan
Tuesday - 28Feb12
Dylan continues to do really well. He's been taken off the oscillator and is now on standard ventilation.
The Mother on the other hand is doing less well. She was meant to have been discharged but given she essentially collapsed whilst seeing Dylan in the afternoon and had to be wheeled back to the ward in a chair they agreed, somewhat reluctantly, that perhaps she wasn't ready to go home just yet.
The Mother's best friend arrives from London for a flying visit and BTB finally makes it home ater a sterling four days effort. She has been amazing.
As Dylan was doing well and didn't really have anywhere to stay, I decided to go back to Taunton. Unfortunately the World doesn't stop turning, there are always bills to pay and things to sort. Or in this case, a car to empty! I must have been looking pretty bad for the guy in the petrol station to comment that I was looking rough. Gee thanks!
Monday - 27Feb12
 | ||
| The Mother and Dylan surrounded by all the equipment keeping | him alive |
It's clear that the ward are unhappy with the thought of me staying an extra night. Although I have friends who are more than willing and happy to put me up, they are 10 to 15 minutes away by car and that's just a little too far to be comfortable at the moment.
BTB had stayed at a very nice hotel over night and I met her in town as, because we had a Dylan in our lives, the Mother needed a few things. Like bras and tops that allowed - if not feeding - at least access for pumps. Clearly I needed a treat too. So I bought myself a new jacket. Clearly I deserved it!
 |
| Dylan, stable with stomach deflated. |
The IM visited the Mother to see how she was healing and provided information and products to help with the healing process.
Because there was a difficulty with me staying on the ward and we had made an error of timings with BTBs trains, BTB and I stayed at The Clifton House Hotel. Top notch. Very comfortable, quiet and with a rather fine breakfast!
The grandparents got to see Dylan in the afternoon. We had wanted them to visit earlier rather than later on the off-chance that it would be the only opportunity for them to see him. One set did manage to lose their car in Bristol which took a while to locate. On the plus side, I have found more places to park in Bristol that I would never have found otherwise!
 |
| Gaston with knitted socks and hat, none of which Dylan can yet have |
Thank you!!! What lovely pictures! Holding you all tight today x
ReplyDeleteDon't play down the importance and trauma of giving consent, Dad. Easy because there is no other option... but so so hard to hand over your little one, with no garantee of good results. I post this knowing that your superstar is back in NICU. Consent is scary as hell, and when/if things like infections happen, you will almost certainly quesion giving that consent. That's ok too. You are doing your job as Father.. Well done.
ReplyDelete