Feeds by nasal tube

Things have progressed a little since Tuesday. Abigail is now on milk feeds only (breast milk supplemented by SMA) and is being given the full amount for a baby of her size by nasal-gastric tube. She doesn’t yet seem interested in suckling at all – nurses are trying to encourage this by giving her a dummy occasionally. This could be because the medication she’s on is making her drowsy; getting her milk via tube means she doesn’t have to ‘work’ for it and so she’s not encouraged to begin sucking; or that some more serious brain problem is preventing her sucking action from working. In the short term, this is the next big hurdle for Abigail – if she can feed on her own rather than by tube she will be a lot closer to coming home.

The ‘fitting’ and twitching seem to have really reduced in the last few days and externally have virtually stopped altogether. No one yet knows reasons for this or whether it has stopped – an MRI brain scan is being organised (possibly at King’s College Hospital in London) for a few weeks time which will check for structural abnormalities. If it’s clear it will be a big step forward but still wouldn’t completely rule out any problems later in life. The kidney and bowel deficiencies noted after Abby was born seem to have been overcome as she is passing waste OK now.

One week old

The weekend brought encouraging news on Abigail’s condition and although there hasn’t been a significant change in her at the beginning of this week, things are still positive. Nix came home from hospital on Sunday and we’re staying at my parents’ for a few days with a probable move back to our house tomorrow or Thursday. Nix is feeling much better and moving about quite well and has this morning had the last of her ‘staples’ extracted from her wound! She seems to be getting on well expressing milk for Abigail and is generally recovering well. We’re just hoping that the wound heals nicely and doesn’t get infected at all.

Yesterday (Monday) there was a lovely surprise waiting for us at the hospital, as Abby had been taken out of her incubator and moved into a normal cot. Because she’s virtually full-term and quite a size (compared to the premature babies in SCBU) she was overheating a bit in the incubator and was considered well enough to be dressed and placed in a standard cot. Nix was also able to cuddle her for quite some time. We spoke to all four consultant paediatricians plus an array of willing medical students on a ‘grand’ ward round, which is a once-a-week round for all the doctors with responsibility for the babies in Special Care. The news is that, externally at least, Abigail does not seem to be ‘fitting’ overtly at all now – although this must be tempered with the fact that although outwardly she appears OK, her brain may still have problems. The ‘abnormal movements’ and twitching also seem to have reduced. Certainly the doctors are sure that whatever twitching does occur now is clearly not the same as the seizures she was having in her first few days. Nix and I spent quite some time with her yesterday afternoon and she didn’t twitch at all.

Her medication level was also checked yesterday and may be reduced, and doctors say that because they still have no diagnosis, they remain unable to give any specific idea of the long term effects all this may have on Abby or how long she might be in hospital for. It does look as though she’ll be in at least another two weeks, though. When I pressed them about what the future may hold for Abigail, the consultant in charge did say that it was still possible that she could be either perfectly fine or have some degree of permanent brain damage. Although the current signs are good, we’re still being told to take it one day at a time.

Abigail will also be taken off antibiotics for the Group Strep B virus. This was a preventative measure to combat the possibility of becoming infected with this virus that Nix is a carrier of. It is potentially harmful if newborn babies are infected but it looks as though Abby is clear of that hurdle! The short term goals remain to stop fitting or twitching of any kind, to reduce her medication for that, to progress her feeding and to get her to the stage where she can suckle for herself.

Thank you once again for your thoughts, prayers, good wishes, cards, emails, texts, calls and visits. We’re overwhelmed with the support we’ve received at this difficult time and although it’s still a long road ahead of us, it looks as though Abigail is making the best possible progress she can at this stage.

Abby tries milk feeds

The latest news on baby Abigail (born Tuesday) seems to be very encouraging. Nix spoke with the consultant in charge this morning after the ward round and overall the doctors are pleased with Abby's progress. The fitting, which is now being called "abnormal movements", occurred less often yesterday (Friday) and was less severe. Abby had already had her sedation and anti-convulsive medication reduced and today it's been lowered even more. A second ultrasound has showed that some of the swelling on the brain has reduced, too.

Today Nix was able to hold Abigail again and even tried to feed her, although Abby didn't seem too interested. This good progress was prompted because a doctor examining her said that Abby had tried to suckle on his finger. As a result, Abigail has this evening began feeding on milk. She's even opened her eyes on several occasions and appears to be waking up a bit more. Doctors noted that she was quite wriggly and objected to having her nappy changed - another good sign.

Consultants say that they will continue to gradually reduce Abigail's medication over the next few days in an attempt to wean her off it, although they are still at a loss to explain the real reason behind all this. More tests will be done and Abby will have to return to hospital in a few weeks for a full MRI brain scan to check for structural abnormalities. There's no prediction yet as to how long she'll remain in hospital - we are still told to take it one day at a time - but she will almost certainly be on some form of medication for several months yet. In the short term, the next 48 hours are important to see how well she picks up on her milk feeding.

One consultant on duty this weekend remarked that she had briefly seen Abigail on Tuesday evening shortly after she was born and commented that prospects then "were not good". Since seeing Abby again yesterday and today she said that there had been good improvement in her yesterday and even more again today, and that she was almost "a different baby". Another registrar who had only seen Abby for the first time today sat down with Nix and asked her to explain Abby's full history, with everything that had happened from before the birth to now. After Nix had told him and he'd examined Abby he said "Given her history, I would not have expected her to be like this today." This is all very encouraging news!

It looks as though Nix will now come home from hospital some time tomorrow (Sunday) after which we’ll spend a few days recuperating at my parents’ house in Charlton before finishing getting our house ready for Abby! It looks like being a long road ahead of us, but thanks to so many of you, we are not alone in that journey. Thank you so much again.

Nix holds Abby for the first time

Thank you so much again for the concern, support, messages and prayer from across the country and the world for Abigail. It’s now 2pm on Friday and I’ll be going in to see Nix and Abby this afternoon, but this may be my only chance to update people today so here’s the latest.

We spoke to a consultant paediatrician yesterday evening on his ward round after examining Abigail. After not fitting for some 24 hours she began fitting mildly again yesterday, although these were not as severe (more of a ‘twitching’) and the oxygen saturation in her blood is now not dropping when she fits, whereas it was before. This means that further damage to the brain due to lack of oxygen should not occur.

When asked for further updates on things like reducing medication, discharge from SCBU, feeding, and long and short term prognosis, the consultant said that we still have to take each day as it comes. He reiterated that there was nothing in her notes or progress since birth that gave doctors cause for concern on her life, but that the two main areas of focus now were stopping the fitting and finding the cause for the fitting. The fitting is merely a symptom of a deeper cause, and it’s that that the doctors want to discover although they have admitted that the true cause may never be known.

Another ultrasound of Abby’s brain today revealed that all appears to be well superficially and some of the swelling has receded. There will almost certainly be an MRI scan of the deeper structures of the brain performed in a few weeks time to check for structural abnormalities. Curiously, the consultant said that although there had definitely been a low blood supply to Abby through the umbilical cord before birth (this was picked up on an ultrasound before the caesarean), pH levels in the blood sample taken from the cord after birth indicated that there had not been oxygen supply shortage to her before birth. In short, doctors are currently at a loss to explain the reason behind the distress, the lack of movement in the womb and now the fitting. More tests are to be done.

Nix was very emotional yesterday and I am not much better, but the love, concern and prayers for so many people really have been an enormous boost for all of us. Earlier today Nix was able to hold Abigail outside of the incubator which is obviously an important moment for both of them, although Abby did fit mildly in her arms. It looks as though the hospital are suggesting this coming Sunday as a possible date for Nix to come home – we are going to play it by ear right up to then. Regular visits to the hospital will be all the more difficult once we are further away and have to bring the children too.

The was some concern over swelling in Nix’s legs and feet that could have suggested possible deep-vein thrombosis (DVT) but I have just spoken to Nix and after spending two hours in ultrasound (and missing her lunch!) there appears to be no cause for alarm.

"A day at a time": the first update

Many, many thanks for the concern, love, prayers and kind words expressed by so many of you over the last two days. We are overwhelmed by the response and care from friends close by and far away. I thought I’d give an update on Abigail’s condition as we wanted people to be up to date on the situation.

As I write, Abigail is 44 hours old and seems to be doing much better. Nix and I had a long chat with the consultant in charge of her in the Special Care Baby Unit yesterday and Nix has also been to see Abby and the doctors in SCBU today. The latest news is that the medical staff are now “extremely confident” that Abigail will survive, although it’s become clear that things were very much touch and go before and during the caesarean. The registrar who performed the operation said that it had been “very timely”.

Abby is still on heavy medication to stop fitting caused by lack of oxygen to her in the womb, although the good news is that she doesn’t appear to have had a fit for 24 hours now. Doctors say that they are still expecting her to be in hospital for another week or so, but that in all probability she will be on some level of anti-fitting medication for several months. Staff will today try again to place electrodes on her head and perform a test looking for normal brain wave activity – something that was abandoned yesterday after the machine failed! Doctors are currently describing Abigail’s condition as “stable”, that is, she is not currently showing any unusual signs given her condition. They are reviewing her sugar/water feed intake as Abby has actually put on weight in the last day! This is not really what they want and could be a further indication of some temporary damage to her kidneys – in other words, she’s taking on more than she can get rid of.

Abigail is now breathing OK on her own and is off oxygen. Her heart, lungs and brain all appear to be fine, although her brain is slightly swollen but this is to be expected with the lack of oxygen and fitting. There appears to be some damage to her kidneys but this will ‘repair’ itself, and damage to the bowel. We don’t know what the long term effects of this might be. Doctors said yesterday that they feel Abby has a 50% chance of making a full and complete recovery with no ill effects at all and a 50% chance of some level of permanent brain damage. This might be that she’ll have mild learning difficulties, through to cerebral palsy and more serious mental handicaps. They say that even if she makes good progress and is discharged as among the 50% that are perfectly fine, it may well be that problems are picked up later in life: she may start fitting in her teens or even later, or she may have cerebral palsy or learning difficulties that won’t be picked up for a few years.

Nix is OK, although just today she has hit the expected very emotional stage usual a few days after birth. She’s now in a room on her own and is up and about walking occasionally to SCBU to see Abigail. The staff have been fantastic and almost everyone involved in the delivery room and operating theatre have been up to see her personally. The registrar who did the caesarean even stopped Nix in SCBU to give her a big hug! Nix is on heavy painkillers but her wound is said to be healing very nicely.

Rebekah and Joshua are fine (we are staying at my Mum and Dad’s although there are frequent trips home too) and they both know that Mummy and Abby are in hospital “a bit poorly”. Becky has certainly picked up that things are not quite what they should be, though, and is quite clingy. We are just taking each day one at a time at the moment.

Abigail Erin is born

Matt and Nix announce the birth of
Abigail Erin

Born two weeks early on Tuesday September 16th 2003
at 3:07pm weighing 6lb 14oz

Abby was born by emergency caesarean today after Nix had expressed concern that she’d not felt the baby moving for some time. She’d not been due to give birth until October 3rd. Shortly after delivery Abigail began to fit and was immediately transferred to the Special Care Baby Unit. Thank you to the many who’ve already sent messages of support and love. Whatever happens in the future we thank God for such a beautiful baby girl who has already captured the hearts of us all. Abigail means ‘Father’s delight’.