Scared and I dont know where to turn.

[preemie12]

Dear ANYONE,

My baby delivered 12 June 2011, all of a sudden when the baby was just in his 30week 6 days. My wife complained of some stomach pain in the middle of the night, so we went to the hospital. The fetal heart beat was 80, and was dipping with increasing frequency. An emergency c-section was done, and the baby was delivered, but at birth there was no heartbeat. Baby was resuscitated with CPR and adrenaline shots. There was a huge blood clot found on the placenta, and my wife had high BP at that time, preeclempsia.

The baby is now in the NICU, but I just came back from meeting the doctor. The baby is on the ventilator, and will be for a while. The kidney and liver seem to have been damaged, possibly caused by lack of blood flow, oxygen when the baby wasn't breathing, and the heart was not beating. That period could have lasted a few minutes.

Doctor says there was blood oozing near the umbilical cord region, a little in the urine and stool. This and the fact that the baby has a deranged blood clotting profile means the baby has had damage to the liver and kidney. We have given plasma blood transfusion.

All we can do is wait and watch. The next 72 hours are critical. And i'm feeling so lost and helpless. Why can't someone just tell me everything is going to be OK? Will our baby have lifelong problems? What other organs are damaged? Will my kid ever lead a normal life? Why did blood come out of the urine - it is a big deal, isn't it?

I am so lost and have no idea what I can do. Can someone pleassssse help me, say something.

 

[Poorah]

First things first breathe!

The medical staff will never tell you everything is going to be ok, because they can't guarantee it will happen and they would never want to get your hopes up to later dash them. That however does not mean that things will not be ok, just that they can't possibly tell at this stage.

I would highly recommend you take things hour by hour. As you say, the next 72 hours are crucial, every hour that passes is an hour of that period dealt with. Hopefully the next few hours will give you some evidence that your little one is strong enough to get through this inital crisis and then go on to thrive.

As for your questions, you will soon discover there is no average premature baby. Because they all arrive due to different circumstances and at different stages of development, even babies born at the same gestational age and weight will progress through NICU differently. For the moment, concentrate on your immediate concerns, speak to your medical team, a big part of their job is to help to look after us worried parents.

Massive hugs to you and to your wife, this is a horribly frightening time. Many of us have been through similar experiences so please feel free to ask any questions you may have and I'm sure people will try their best to answer them.

 

[25weeker]

Sorry to hear you and your wife have had such a scary time.

The wait and see is the worst thing to hear but unfortunately that is all you get in neonatal.

Holly my surviving daughter didn't have a heartbeat when born and was fully resuscitated. Her agpar at 1 min was 1 which is the lowest score. As well as that she also had a grade IV ivh. Despite her rocky start she is currently 17 months/13 1/2 corrected and apart from bring small is showing no side effects. We probably won't know fully until she starts school but so far so good.

Sorry I cant give you any specific answers.

I will be thinking of you all over the next 72 hours.

Take care xx

 

[mum35]

I don't normally post things but I just want to say hang in there. The whole NICU process is terrifying and an emotional roller coaster. My twins were born at 30 weeks and spent 5 weeks in ICU. It's very frustrating because noone will tell you anything but as an earlier post says it's because no two babies are the same. I found talking to the other parents in the ICU a comfort as you feel very alone but realised that we were all in a similar state of shock and confusion. All the best for you and your little miracle.

 

[Marleysgirl]

Hi Preemie12 and

I would so love to tell you that everything is going to be alright but, if you found out next week that it's not, you'd only come back and moan at me for making false promises

All you can do at this stage is take it an hour at a time. As baby improves, you'll start taking it a day at a time, then a week at a time. You - and baby - will have good days and bad days, two steps forward and one step back.

Trust in the professionals, be there for your wife (who will be in physical pain from the c/section as well as mental anguish), and take as many photos as you can.

 

[katy1310]

I don't have any experience of this exact situation, but I too had pre-eclampsia and Sophie was delivered by emergency c-section at 27 weeks. Sophie and I both nearly lost our lives. She's now 15 months old (her due date was a year ago today) and has no apparent problems at all so far, although we don't know what will come up in the future.

As the others have said, you can just take it a day at a time and the NICU journey is a rollercoaster, but just talk to the nurses, ask anything you don't understand and we are all here for you and your wife. There is so much they can do now for preemies.

xxx

 

[RainbowGift]

They can do amazing things in NICUs. I saw some really early babies, with very major problems, get better and better each day. They are now home and doing GREAT! Get to know some other parents there and lean on each other, it's a special bond and a valuable friend who understands exactly what you are going through. That helped me a lot. Blood in the urine indicates certain problems but its not usually as scary as it sounds! It's way more common than you think and most of the time it is not very serious. If it is something serious, the doctors will get right on it. Ask questions! I asked a million. Tell them how you are feeling. Tell them "I'm scared, is there any reassurance you can give me? Have you seen this before? What happened in those cases?" etc.

This is such a tough and cruel way to have to begin parenthood! The way I looked at it is: I am going to be a better parent because I had to endure so many trials at the beginning. I am stronger and more capable now.

Focus on giving love to your baby and be *positive*, there is POWER in that!!

Love, love, love to you and your wife and LOVE, LOVE, LOVE to your baby!!xo

 

[preemie12]

Thanks so much everyone for your replies and support. It's incredible re-assuring just to hear about things from you.
Today there was still blood in the urine and the stool. It means definate kidney and liver damage, but the doctor says there's slight improvement. The baby got off the ventilator, but still needs breathing support today. I heard the baby cry for the first time in 2 days. I have never been through such an emotional time in my entire life, and there's just such a sinking feeling.
But you all are right, have to stay positive and try our best. What's done is done, and just hope that our baby can lead a normal, healthy life like so many of your preemie children.

 

[AUGmum]

You and ur family are in my thoughts. The NICU journey is filled with ups and downs but know that God doesn't give you anymore than you can handle. Take each day as it comes and i am praying that your little one pulls through.

 

[cat81]

I just wanted to say congratulations on your baby and I am so sorry that you are having to go through this. You are all in my thoughts and I hope that your baby continues to improve and that you get some good news soon. x

 

[Marleysgirl]

Thanks so much everyone for your replies and support. It's incredible re-assuring just to hear about things from you.
Today there was still blood in the urine and the stool. It means definate kidney and liver damage, but the doctor says there's slight improvement. The baby got off the ventilator, but still needs breathing support today. I heard the baby cry for the first time in 2 days. I have never been through such an emotional time in my entire life, and there's just such a sinking feeling.
But you all are right, have to stay positive and try our best. What's done is done, and just hope that our baby can lead a normal, healthy life like so many of your preemie children.

You hid three bits of news in your post ...

• The doctor says there's slight improvement
  
• The baby got off the ventilator
  
• You heard the baby cry for the first time in 2 days

These are three wonderful pieces of news

I know it's very overwhelming at the beginning, but things will get easier as you come to understand more about what is happening around and to your baby.

Celebrate the good news

 

[RainbowGift]

I thought this may help you... it explains how the kidneys are just not mature enough in some preemies and are still forming. Even in full term babies, the kidneys are forming a few weeks after birth. The staff there will regulate fluids and keep a close eye while his kidneys grow. If there is any problem beyond that they will take care of it.

I keep thinking about you and your wife, because I know the "sinking feeling" you are talking about. What a sickness in the soul!!! It is the most terrible feeling ever. You are going to get through this! Keep talking to the staff.

Your news really does sound very good. Already trying ventilator-free time! Already seeing improvements in the urine/stool! Already hearing that voice! These are all REALLY good signs, you have a tough little baby that is making GREAT strides! Focus on the good. I sang a lot, it helped the sick feeling... try it!

Love to you!!!! xoxoxo

Why Kidneys Fail in Preemies
Immature kidneys are the main cause of renal failure in preemies. Babies born prior to 35 weeks do not have fully developed kidneys. In the two weeks following birth of a full-term baby, the kidneys experience a rapid growth process, whereby the kidneys begin to function at full capacity. Diabetes or high blood pressure may also cause renal failure.

Identification/Symptoms
Symptoms of renal failure may include abnormal fluid levels, dehydration, blood in the urine, anemia and abnormal levels of minerals such as glucose, sodium, potassium, calcium and phosphates.

Treatment
The most common treatment for renal failure is regulation of fluids and minerals. For preemies, this means caregivers will calculate the baby's fluid and mineral needs to drops needed per minute, as administered by I.V.

Prevention/Solution
A full-term pregnancy (or pregnancy lasting more than 35 weeks of gestation) increases the odds that a baby will have fully developed kidneys. Once renal failure is detected in a pre-term infant, regulation of minerals and fluids is essential to keeping baby healthy and free of secondary complications.



Read more: Reasons for Renal Failure in a Preemie Infant | eHow.com https://www.ehow.com/facts_6370714_reasons-renal-failure-preemie-infant.html#ixzz1PHb9bhoq

 

[AP]

I just want to add my congratulations and Marleysgirl is spot on.
Being off the vent is a step in the right direction xxx

 

[katy1310]

I've been thinking about you all as well. Like the others have said, there were three bits of great news today - slight improvement, off the ventilator and crying.

Apart from a teeny little cry when she was born, it was weeks before we heard Sophie crying. She was on the ventilator for a couple of days after she was born, and CPAP for 10 weeks, and she was back on the ventilator for a couple of days when she was 3 weeks old.

It's a scary time for any family. Thinking of you all

 

[preemie12]

I cannot express in words how much all of your support means to me. It warms my heart to think there are people out there, who from only the goodness of their heart, are with me, feeling my pain and helping me through this. It means a tremendous amount and I hope you get whatever it is your heart desires.

Rainbowgift, thanks so much for the link. It helped to understand, and give a little hope that the kidneys CAN fix on their own.

Yesterday the usage of the machine that provides breathing assistance was weaned down a bit more, and hopefully in the next few days it will be removed fully. Lets hope for the best. There's still significant blood in the urine, doctor is saying the kidney and liver have been damaged, but the extent we cannot say. There was also a murmur in the heart, they've called a specialist next week, as there are a couple of holes in the heart - but again the doctor said it might heal on its own. I don't know. Trying to focus on the positive only, but it can be hard at times.

Thank you all once again, you've all been angels.

 

[rensben]

Just wanted to say that I am thinking of you, your wife and your baby. My son was born at 30 weeks 5 days and although he did not have any other complications it was a very stressful time for my husband and I. The doctors never told us everything would be fine even though my son was in very good health. We took things day by day. We watched and learned a lot in the NICU.We saw some amazing babies pull through some very tough situations. They are stronger than they look and will surprise you with how resiliant they can be. Have faith in your little one. Talk to him every day and let him know you love him and are there. It's really all you can do. Much love to you and your family.

 

[vermeil]

Hello preemie12! First congratulations on the birth of your baby! You are right, having a preemie is very scary and difficult. Many others have given you great advice so far. Just wanted to add that as scary as it sounds, it's common to have to ressuscitate preemies in the first few days and in the vast majority of the time they are just fine after. They had trouble ressuscitating my son, it took long minutes - the most terrifying day of my life - and a year later he's thriving and doing great.

What I found helped me a lot was to celebrate all the small milestones. The doctors told me these were the first 72 hours, then the first 10 days, then the first 6 weeks. At each of these we actually bought a small cake with candles and did our best to celebrate these steps - even if we were all sorely lacking sleep and scared out of our minds. It gave us something positive to focus on, a good moment to share.

Also ask in the hospital if you can talk to someone about your misgivings. I found that helped immensely too.

Finally the march of dimes website has lots of good info on preemies.

https://www.marchofdimes.com/prematurity/index_about.asp

Here`s a wonderful, illustrated interactive guide to preemies - highly recommended! For example they explain nicely how to interpret your babies`s gestures via small videos you can watch. It`s reassuring how familiar they were to me.

For Families: Understanding Your Premature Infant: An Interactive Program for Parents
https://www.milesforbabies.org/prematurity/index_families_66216.asp

the section NICU has GREAT tips for us parents
https://www.milesforbabies.org/index_nicu.asp

 

[nineena]

Hi there, firstly congrats on the birth of your little one. Nicu is such a very scary and emotional time but as others have said the staff can do AMAZING things and these baby's are so unbelievably strong.
As you've already said baby's off the ventilator and i presume the CPAP is being reduced too, thats FABULOUS.

A lot of preemies do have a heart murmur but in some cases they do resolve on their own. We were told Ella had one and by 4months it could no longer be heard.

We're all thinking of you and pray that your baby continues to make good progress xx

 

[RainbowGift]

My daughter had a heart murmur, too and it went away on it's own. Holes like these are more common than you would think, the organs are not fully developed and are still growing. I'm so glad that you are able to grab for the positive thoughts and you are holding on to them.

My son (I had twins) also had a problem with his heart. It's called SVT (supraventricular tachycardia). The electrical impulses get messed up because a tiny area didn't develop correctly to bridge the impulses. His heart rate would go up past 220 and he was put on medication to lower it. I was sent home thinking that I would be rushing to the hospital with him when I least expected it and using tactics like putting ice all over his face to slow the heart.... I was soooo sick and scared about this. Well.... I listen to his heart at home, and it is always sounding stable. His cardiologist visits are always great and his cardiologist now says that it looks like he has grown out of it. Still, he will take meds 'til he is nine months, just in case. It's a good example for you, of how something so terribly scary can turn out so well.

I continue to think about the three of you. I said a prayer for your babe today. xoxo LOVE!

 

[Marleysgirl]

Thanks for the update, preemie12 (Dad) - and another day with good news, the Cpap is already being turned down

How is Mum doing? Is she still in hospital, or has she been allowed to come home yet? I was fortunate in having a private room on the Postnatal ward, just down the corridor from NICU - so I stayed in as long as I could (a fortnight) so that I was as close as possible for as long as possible. Also, has anybody talked with her yet about expressing her milk and freezing it ready for when baby starts being fed?