Granny too soon

What a difficult time for you all. I do hope that there is better news today.

I really don't know what to do with myself today. My granddaughter has been making really good progress then two days ago everything changed and today she's really very poorly again. She was beginning to breastfeed and had just come off breathing support and then she had an extreme reaction to some oral medication and is back to where she was a couple of weeks ago - only it seems to be a much more serious problem now. It's night time there and my daughter has left the hospital completely exhausted and just gone to bed, so there won't be any more news (I hope) until about 8pm our time when my daughter returns to the hospital. It's a constant nagging ache - I know that worrying doesn't help and I'm keeping myself busy and trying to divert my thoughts, but I feel so, so useless!!
Baby's gestational age is nearly 37 weeks now and many other preemies seem to be out of the woods by this stage, but for our little one it seems that every advance is followed by a setback. My daughter said that baby was crying a lot today; something that has rarely happened before and is breaking my daughter's heart.

Sending all good wishes GA for the continued improvement for your tiny DGD. Thank you for the update, you and your DD are sounding strong and positive - a family of fighters

Thanks for the update ga. Preemie babies are amazing - such tiny scraps yet so resilient. 4lbs is quite a milestone and seems to bring with it lots of other positive changes. I hope she goes from strength to strength now........ And you, too!

I meant

GA, I'm so glad that the outlook is improving and that your precious GD is getting the best of attention. Thank you for updating us on her progress. [flrowers]

What a lot of worry for you, ga. Glad to hear the little one is making progress. Fingers crossed it will continue and you will have much to look forward to.

How is your mother?

It's so good to have your update granny activist. Your news brought tears to my eyes, family life with all it's joys and challenges set out in such a calm and loving way

Thank you to all who have enquired after my granddaughter.
Update: After many ups and downs (it's terrifying how quickly tiny babies can be fine one minute and at death's door the next), I think my gorgeous granddaughter may be out of the woods. (I hardly dare say that out loud as it's been such a rollercoaster.) She has suffered daily problems with oxygen depletion (bradycardia/desaturations) and still is unable to breathe unaided, but she's getting there and instances where she turns blue are now few and far between. She is finally putting on weight after having her feeds fortified and now weighs FOUR pounds. She has MRSA in both eyes that so far has not responded to eye drops or ointment, so today a new treatment is being tried that it's hoped will do the job.
My daughter is now meeting regularly with the speech and language therapist and the child development specialist to begin to plan for baby's ongoing care and to prepare for any consequences of the repeated lack of oxygen to baby's brain. There is a lot that can be done to improve the little one's prospects and my daughter is eager to learn as much as possible. To be honest I'm hopeful that in time all will be well, but actually I'm just so thankful that baby seems to be pulling through that I'm happy to deal with whatever the outcome is.

I wish I could offer some practical help grannyactivist but I am thinking of you and hoping for good news

and every possible positive vibe to you grannyactivist, to your daughter and her little baby and indeed to you, your sister and your mother. Hang on in there!

Don't forget to look after yourself too ga, I'm sending my very best wishes to you, the little one and her parents.

grannyactivist Such tiny babies seem to be prone to infections in spite of all the precautions taken in neonatal units. I'm glad to hear that she is recovering and making progress. Starship is truly a wonderful place.

Will your mum take nourishing liquid food?

ga my nephew born at 28 weeks - head the size of a tennis ball and weighing 2lbs - just obtained a 1st in his masters. Each day is a day gained.

ga she sounds like a little fighter. Thinking of you

Glad to hear your granddaughter is responding ga, and so good to read whenim64's story about her granddaughters.
Sending and positive thoughts

GA, you must be so worried, I do hope that your little granddaughter rallies and pulls through, likewise your mum.

(Hugs) ga This is what happened with both my little grandaughters, but the important thing is the frequent testing and adjusting of treatment. My daughter and SiL were given daily test results and would text to let us know that the infection was reducing as hoped. There would be occasional reversal which was tackled quickly. When they spoke to other anxious patents who were there on the unit, most of the babies had caught infections and recovered with treatment. We wondered whether infections were due to neglect of care, but the doctors and nurses explained the infection control regime, which included emptying rooms of all incubators and moving babies to newly decorated and deep cleaned units routinely. We got more confident as the babies upped their feeding, got over their infections and gained tiny amounts of weight. At one point, there was a plan to move one baby to another hospital for her first lumbar puncture because they needed some extra expertise for her, but a specialist came over to do it, decided not to after all (what a roller coaster that was!) and our little grandaughter's symptoms subsided overnight. Just hang on in there - it's both nightmare and living in limbo, but it passes.

grannya What a worrying time for you all. I'm glad to hear that your dgd is rallying, bless her, and I hope your mum finds her appetite soon.
Make sure you look after yourself too

What an agonising time for you all. It sounds as though your little DGD has a lot of fight in her! How lovely that you've actually been able to see her 'properly' now without the helmet. It must make you all feel better to see her like that, apart from her appearance, it's a sign of recovery. to you all.

Update:
I've been away for a few days holding my sister's hand as she is taking over with my mum - who is refusing to eat!! The adage 'You can take a horse to water.....' comes to mind. Mum has decided that she now wishes she had died at the age of 70 like her sister!
At the same time my granddaughter contracted a massive infection and has had to be intubated, have a blood transfusion, two lumbar punctures and is now on three different antibiotics. It's been touch and go every minute, but she's stabilised a little and is now producing some white blood cells to counter the infection. The intubation tube looks very painful, but it means that we now have some photo's of her without the ventilator 'helmet' on and she has lots of black hair and actually looks more like a baby. I've been liaising with my other children as my daughter (in NZ) hasn't got time to speak to us all and her siblings are desperately worried about their niece and needing me to keep them updated. I'm so glad that I've had slightly better news to pass on and I am very hopeful that this tenacious little baby is going to make it. Her weight has dropped quite considerably, but feeding is going to be resumed today so if her gut has recovered she should begin to reverse the losses.

grannya I'm so glad to hear that things are improving all round for your family. It will be nice for you to see your sister and for her to cope with your mum!
Sil sounds like a treasure who will do what's needed to look after his girls.
Best wishes to you all

Lovely that your news is so much more positive GA, may things continue to go well.

Lovely story Kate