Complications following possible HELLP

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Complications following possible HELLP

Postby tanikit » Wed May 14, 2014 12:09 am

My sister-in-law gave birth last night at 31 weeks exactly to her son who weighs 1.3kg. She had been in hospital since Sunday (10 May) with pre eclampsia. I am the only slightly medical person in my family and am therefore trying to get information for the rest of the family, however I do not have all the medical details. I know she had raised liver enzymes since Monday and that the baby's movements were slow on Monday. The baby was born late last night and is doing well in NICU (he did cry at birth but I have no other details about his treatment now), however since giving birth however (by C-section) they say my SIL's kidney and liver are failing and that she is jaundiced. She has been moved to high care now and her blood pressure is still raised though I do not know how high.

Has anyone been through this? What is likely to follow and how serious is this (I know it is very serious, but cannot find any prognostic indicators on line - they just say about 25% of women with HELLP develop serious complications) She is still in a lot of pain and again, I do not know if this is pain from the C-section or abdominal pain. If everything goes as it should then how long will she be in high care?

And finally for those who have been through a thing like this - how do I support their family (I know the husband is struggling and so too is my MIL) and what can I say? Is there a realistic way for the father to split himself between a preemie baby with all his needs and a very sick wife? Any help or words of encouragement appreciated.

Update: other information is that she is not producing urine at all since the birth. The baby was on a ventilator last night (I don't know if he is still on one) and he is being fed (I imagine by tube) and that the nurses are happy with this.
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Re: Complications following possible HELLP

Postby MomTimesThree » Wed May 14, 2014 07:01 pm

Welcome. I'm so sorry to hear of the complications your sister in law is facing. What a lucky family to have you reaching out for support and considering what is most helpful for them.

It is not uncommon to continue to face complications after birth. Pre-eclampsia and HELLP can leave long lasting complications, but each person is very unique. It sounds like she is in good hands- and I will keep good thoughts that her condition improves with time. I'm sure others with HELLP experience will also chime in.

In regards to what is helpful letting them know you are thinking of them and offering to be at the hospital with either their child or wife (so that someone is always looked after) can be helpful. Everything at home can really fall apart when you spend so much time at the hospital- so feeding dad- keeping the fridge full of healthy easy/on the go food, offering to keep track of mail/bills etc, mowing lawn. And depending on your relationship, these might be things you just do so dad doesn't have to worry about it.

If they are far from the hospital and dad will have to make lots of back and forth trips, gas gift cards- sometimes you can also provide "gift cards" to the hospital cafeteria too.

And don't forget to say congratulations- while it's not the way anyone wanted this lil' one to come into the world- lil' one still had a birthday and they still have the right to be proud new parents. :)

Keep posted as you're able,
Lauren
2008-Our Baby Girl, PTL born too early at 30w6d, Fought so hard... Forever Loved & Missed
2010- Lil' Bro, Pre-E at 29 weeks... Induced at 36w6d, Born 37w
2012- Lil' Sis, Super-imposed pre-e at 25 weeks, PTL & GD at 35 weeks, Evicted 36w
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Re: Complications following possible HELLP

Postby tanikit » Thu May 15, 2014 04:29 am

Thanks. Those are great ways to help - they have asked today that no one go to the hospital at all (visiting hours in high care are terribly limited so her husband will be there alone) so will try and get some food to her husband and see how he is doing when we can. I wouldn't have thought of cafetaria vouchers - that is a really good idea as I think he is eating there a lot now. Luckily he is close to the hospital though everyone else for now (parents in law etc) have far to travel. We have all sent congrats too. The baby is off the ventilator, we have seen photos (I think those photos also help one say congrats and he really is gorgeous and it makes it all more real for those hearing all this news) and he looks pretty good for a 31 weeker.
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Re: Complications following possible HELLP

Postby tanikit » Thu May 15, 2014 10:20 am

Here is an update: my SIL was moved to ICU this morning and is on dialysis. She has also had a platelet transfusion. Things are not going well. I have had no news on the baby - he appears to be ok.

We are trying to organise for my MIL to move in with my SIL's husband so that she will be closer to the hospital to visit her daughter. Also trying to organise that my MIL be allowed in to visit the baby in NICU as she has not been able to see him at all and it might help my SIL's husband to be able to deal with his wife and worry less about his son (obviously he will still be visiting him, but he cannot be in two places at once)
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Re: Complications following possible HELLP

Postby tanikit » Thu May 15, 2014 02:35 pm

Further updates: Daddy got to hold his baby today for the first time. My SIL is still very sick, though feeling slightly better since the dialysis and was able to talk to her mother on the phone this morning.
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Re: Complications following possible HELLP

Postby MomTimesThree » Thu May 15, 2014 08:08 pm

Thanks for the update! What a momentous day! Glad they are both making positive progress!

Keep 'em coming. We'll be rooting for them both!

Lauren
2008-Our Baby Girl, PTL born too early at 30w6d, Fought so hard... Forever Loved & Missed
2010- Lil' Bro, Pre-E at 29 weeks... Induced at 36w6d, Born 37w
2012- Lil' Sis, Super-imposed pre-e at 25 weeks, PTL & GD at 35 weeks, Evicted 36w
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Re: Complications following possible HELLP

Postby tanikit » Sat May 17, 2014 06:38 am

My SIL is still in ICU and still having dialysis treatment. Her blood pressure is around 160/100 - her mother and father went to visit her and her blood pressure went up when they visited so now only her husband is visiting again. The doctor said this is the worst case of HELLP he had seen, but again it happens so seldom that this is probably why - it is great to read other people's stories of this and know slightly more what can happen. I have no heard any more about her platelets and only know about the one transfusion. I also have not heard any more about her liver or whether she is still jaundiced or not.

Baby is still doing well - they said they would work on 2 months in NICU but again they are just estimating that based on his gestational age as they really do not know. They say they suspect my SIL will be in ICU another 5 days but again that is also just a guess. She is longing to see her baby, but he cannot be moved and neither can she right now - I think she was hoping they would let her go in a wheelchair but at the moment she has far too many monitors attached and with the blood pressure still high, it is probably not advisable.
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Re: Complications following possible HELLP

Postby tanikit » Sun May 18, 2014 06:21 pm

My husband went to visit his sister for the first time today - she is still in ICU. Her husband had been trying to set up a baby monitor in the NICU and ICU so she could at least see her baby, but the distance is too far - have suggested they try skype from one room to another, but it is a bit dangerous leaving computers lying around anywhere here - they will get stolen - maybe they will try with cellphones. They need to get some way she can see him though holding him would be better. She gets very tired with visitors very quickly, so they are trying to keep visiting to shorter sessions.

She has also been complaining that she wants to breastfeed and yet she has not been expressing and there is no news on whether they have stopped her milk from coming in or not which is another possibility. If they have not given her anything then she needs help to express if she really does want to breastfeed later and they also need to explain what drugs she is and will be on and if it is not really possible to do so.

Baby is still doing well. One of the photos they sent he looked a little jaundiced, but no one has said anything about that. I have asked how he is being fed, but no one can answer that either since I am not talking to the father and he is the only one who has been in there.
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Re: Complications following possible HELLP

Postby tanikit » Mon May 19, 2014 03:16 pm

My SIL managed to hold her baby for the first time today - she said she had to persuade them to let her off the dialysis machine (it needed servicing anyway so it was a good excuse) and was wheeled on her bed (no wheelchair) to NICU where she held her baby for half an hour before returning to ICU. She is still very weak and they say her potassium is a bit low and they are not so happy about that. She's been through a lot - now just praying her kidneys will start working by themselves so she can leave ICU soon. Baby is clearly still doing well - he has dropped to 1.2kg but that is to be expected. He is apparently feeding well.
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Re: Complications following possible HELLP

Postby tanikit » Tue May 20, 2014 08:20 pm

My SIL is not doing so well today - it has been a week now since the baby was born and 10 days since she was first admitted to hospital. She had blood in her urine this morning and her heart rate was irregular. It is very hard to get medical information - I know the potassium was low and I know she is still on dialysis. No idea what blood pressure med she is on as this could also be leading to low potassium. She is very depressed today and again this could be because she has been sick so long and could not see the baby today or it could be because she is so ill. Her mother said that she did not appear interested when asked about the baby today and her whole demeanor is down. No news on the baby today.

Her husband now has his family visiting him and they have also been to see my SIL today. She is still very weak and not up for many visitors. The entire family is feeling pretty desperate now - I guess after the birth of the baby everyone wants to celebrate - it feels that in many ways the baby is being forgotten and at the same time, the entire family needs support and we are all very anxious that my SIL get better.

I had my own two babies in NICU but only for a few days each and it was terribly tough, but I could get to them. I have absolutely no idea what my SIL is going through, but feel desperate for her and for those close to her.
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