Thursday, 2 July 2009

The early days. January 28th '09- April '09

Day 0- 28th January 09
9:59 am Baby Hope born screaming! She came out bottom first by elective classical c-section weighing 4lbs 14oz
She scored 9/10 on apgar at 1 minute, and 10/10 at 5 mins. This is not what we were expecting as we were warned that she's likely have 'poor neurological tone'.
Hope's blood sugar was reported to be only 0.8 (should have been over 2)
'Aptimil given, baby not interested. Baby became blue and floppy. Taken to resucitare. Administered facial 02. Paed called. In view of baby's condition transferred to SCBU'

Day 1- 29th January 09
Hope is being fed by a nasal tube every 2 hours. Her blood sugar levels are improved.
We met with Dr. Zengeya . He had done an ultrasound on her head and found that her ventricles were measuring 17mm and 23mm (a scan just 2 weeks earlier has said they were 12mm and 17mm). Dr. Zengeya wasn't very positive about her prognosis. He wanted to see if she'd drink from a bottle today though didn't expect she'd be able to.

That afternoon, Hope came out of her incubator and into a 'hot cot' with breathing monitor.
At 4pm she took a feed from a bottle.
After her bottle, she had her first trip in a pram...for an MRI :O( I was gutted watching someone else take her for her first outing.
Just before midnight, Hope breastfed! Dr. Zengeya- WRONG!

Day 2-30th January 09
'3 hourly feeds of 44ml. Combination of bf/ng tube /bottle'
Kicked out of intensive care into special care (nursery). I'm now able to do all her feeds, nappy changes etc :O)

Day 3- 31st January 09
4 hourly feeds. Breastfeeding with bottle top ups of between 15-30ml. Ng tube only used at 3am when nurse fed her.
7pm, taken off hot-cot :O)

Day 4- 1st February 09
I requested that nursing staff didn't use the ng tube for her 3am feed (they use it because it's quicker). When i arrived for the 7am feed, the ng tube had been removed! This was such a huge milestone for us because we'd been warned prior to her being born that she may need to be tube fed for life! WRONG AGAIN!
The evening of that day we moved to the 'mother stay' unit, which is basically a home from home, but where they could check her over when needed.

Day 5- 2nd February 09 (worst snow for 18 years! :O) )
Trial demand feeding.
Weight 4lbs 9oz
Met Dr. Zengeya who was pleased with her progress. He discussed with us and showed us the MRI findings. The ventricles are very large :O( Apparently, they are now questioning whether she has a corpus callosum, which is odd since it stated on the prenatal MRI that 'the corpus callosum is present and normal'. I have to admit, the ventriculomegaly looks severe on MRI images...big black spaces where there should be brain :O(
He also stated that her cerebellum was 'Fine. Maybe a little bit small. Not a concern' WTF- this is why were advised to terminate!

Day 7- 4th February 09 – DISCHARGED!!! :O) :O) :O) a day i never allowed myself to even dream of- taking home a live baby!

Neonatal discharge: 'An MRI confirmed antenatal findings of ventriculomegaly and a small cerebellum. The ventriculomegaly was bilateral but more pronounced on the right, with dilation of the third but not fourth ventricle. There was a marked CSF space surrounding the cerebellum but also surrounding the cerebral hemispheres. A corpus callosum could not be identified, but had been normal on the antenatal MRI. There was evidence of porencephalic change in the right frontal lobe.
The scan was reviewed by the neurological team at Oxford who advised that no neurological input is required at present. (This is good news as there was talk of her needing surgery to insert a shunt).
Hope's parents are aware that some developmental and or motor delay is likely but that the degree of this is hard to predict. (this slightly more positive than prenatal reports which stated that she'll likely be severely handicapped and may never walk/talk).
She will be followed up in Dr Zengeya's clinic and will need twice weekly measurement of her head circumference in the meantime. Dr Chinthapalli has been asked to advice re: specialist neurological follow-up'. It's felt that no shunt is required as it was not the appearance of high pressure.

19th March 09
Hope is reviewed by Dr Zengeya. He seemed surprised by how well she seems to be doing, and said she's doing 'extremely well and hopefully she'll continue to do so'.
His report: 'Problem: Bilateral ventriculomegaly, IUGR (inutero growth restriction), a small cerebellum and possible absence of corpus callosum, small stature.
It was a pleasure to review Hope in my clinic today at aged 7 weeks with both her parents. She has made significant progress since discharge. She is breastfeeding on demand and receiving supplementary bottles feeds of 10oz of Aptimil per day. She has been gaining weight, although slowly. She appears to be very hungry and cries a lot. She smiles socially. She has good head control. She is now fixing and following with her eyes through greater than 90 degrees. She startles to noise and is beginning to respond to her mother's voice.
On examination she looks well. Her weight is 2.51kg (5lbs 8oz) which is below the 0.4th centile but she's beginning to approach it. Her head circumference is 33.4cm (0.4th centile and following it). She has a high arched palate but the rest of her physical examination is unremarkable. (I am inclined to disagree with him on this last point; he forgot to mention she's absolutely perfect and soooo beautiful, but I suppose in their terms unremarkable is good, especially since prenatally we were advised she may have dysmorphic features).
Hope remains small with a poor weight gain. She was seen by our dietician following the clinic visit who suggested that we should switch from aptimil to infatrini to boost her calorie intake. I will review her in 3 months time to monitor her progress. (3 months is great because it shows he's not too concerned at present).

24th April 09. aged 12 weeks
Hope is now 7lbs 4oz and has just moved into newborn clothes. She' spoilt! We never put her down. She has a tantrum if we ever try. If jobs need doing, I put her in her sling. She now sleeps about 4 hours at night, from 12-4, then comes for cuddles for rest of morning. Every time she wakes me at 4am I count myself lucky. She can roll onto her side. We have lil conversations. I think she may be slightly delayed, perhaps I'm just paranoid, but I don't think she smiles as much as a baby of 12 weeks should, but that just makes her smiles even more special. She really is doing so well. I'm so very proud of her. So far she's pretty much proving the medical profession wrong, and if and when the time comes that she stops proving them wrong..that's fine. I do think that she'll be delayed in some respects. Those big black spaces in her brain are bound to have some consequence, but I'm pretty certain that in her own time she will both walk and talk. Until then, she is my reason to smile again, the light of my life! My lil Hope!

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