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New and struggling

post #1 of 32
Thread Starter 
Hello ladies.

I just gave birth to my son at 34 weeks gestation by emergency induction on Saturday August 4th due to HELLP syndrome. I just was discharged from the hospital today after being there for a week. I was on the same floor as my son so I could go see him at anytime but my heart broke today leaving him behind. He was 3 lbs 14 oz 18 inches at birth. He is now 4 lbs 10 oz. he has been jaundiced pretty much ever since and they have him on the lights . His heart rate has been dropping frequently today it dropped to 63 bpm and it's so worrisome when those incubator alarms go off. Saying good night to him and going home without him is just the worst part. I trust he is in good hands but it's so hard and it's hard to find others that understand. I'm pumping milk every three hours for Him. He started taking it with a bottle today which is a huge deal and he is tolerating it ok. I hope to definitely do kangaroo care but right now I have so many emotions, I miss him so much it hurts and he should still be in my womb growing and thriving....makes me feel like a failure even though I know it's not my fault ... I know I couldn't hav eprevented it . But these added hormones don't help.

But it's nice to find others that understand.
post #2 of 32

hug2.gif

 

Congratulations on the birth of your son!  I know it's hard to believe now, but soon the NICU experience will be behind you.  It's little comfort when you are living the NICU rollercoaster and can't be with your baby all the time, I know.

 

My son was born at 32 weeks due to severe pre-e and spent 6 weeks in the NICU.  It was so hard.  But that was over 7 years ago and while I will never forget how traumatizing it was, it is a distant memory.  My second was born at 34 weeks and spent 10 days in the NICU, which was a huge relief after how long my son had been there. 

 

The most important things you can do now are keep pumping, nourish yourself, get as much rest as you can, and try not to blame yourself.  This is NOT your fault.  Don't forget that you are also recovering not just from childbirth, but from a life-threatening illness.  Please be kind to yourself!

post #3 of 32

awwww :(  so sorry to hear but i totally get your feelings.  i didn't have hellp, just pre e, but felt so guilty and mad at my body for essentially evicting our litte girl.  it's definitely a roller coaster ride.  two steps forward, one step back was good to keep in mind.  i felt fortunate that the nurses in our nicu were so nice.  they explained things i didn't understand even though one nurse's explanation was diff from another's sometimes and i think that's usually understandable.  hope your little guy's time there is short.  so glad you're pumping and it will pay off!  my girl still only nurses w/ a nipple shield; really wanted to avoid that but after trying to get her to latch four days in a row and then on the fifth day w/ the shield she started tranferring milk immediately i figured we'd use it as long as needed.  hope you can spend lots of time w/ your lo!  i couldn't as we have two olders but did as much as i could and mostly didn't feel guilty about that!

post #4 of 32

I understand where you are coming from.  Congratulations on surviving HELLP.  I'm a fellow HELLP survivor too.  On Dec 21st 2010 I developed sudden onset severe HELLP After being transported to the closest hospital with a NICU even though still unstable, My son was born via emergency C section on Dec 22.  My heart was damaged but its function falls within the "normal" range still so as of July 2011 it has not needed further treatment.  My other organs are still healing and my bloodwork is still not quite back to normal but almost.

My Son Nathaniel, was born at 1lb 14oz and 14" long. He is now 19months old and weighs 21lbs. He was on two different types of ventillators his first month of life. He was given decadron to help him get off the machines.  I honestly feel like it saved his life.  It changed him overnight! Within a few days he was on just oxygen. Though when they got him off the decadron, he had a predictable back step.

He also had heart rate drops and he would stop breathing.  No mother should have to go through seeing her child go through that, but for some reason, we were put in that situation.  I'm so sorry you are going through that and I hope he outgrows it quickly.  I know the alarms are scary, but they are just that, alarms.  I'm pretty sure every baby in the NICU sets them off at some time or another. :) My poor Nathaniel used to set his off with Bradies on bad days like once every 5 minutes He gave the nurses gray hairs.

You'll learn this too, there are different types of alarms.  There is almost always a warning before a bad alarm, so the nurses know to check just in case the other alarm is going to go off. 

Anyway Nathaniel is now doing great. They sent him home on oxygen and monitors he was on those for a couple of weeks then they took him off of them. I was still scared, so I put a Snuza Halo, (Now called a Snuza Hero) on him and kept it on him until it wore out! It's the best monitor I swear! I didn't have to worry about his breathing at night because it can even be set to click with every breath.  And if it doesn't feel him breathe it will vibrate to arouse him and will alarm if it doesn't feel him breathe again after that.  I loved it because It could react quicker than I could. It is less reliable in the car but I made him wear it around the clock anyway! lol

I hope you don't mind my sharing my story with you, HELLP is kind of a rare thing and super scary and we have a lot of healing to do afterward, if we can.  Our bodies do the best they can do.  I know how you feel when you say you feel like a failure.  I still feel like a failure.  But it isn't your fault.  If we knew what causes this I'm certain we'd avoid it.  No matter what I'm sure you did the best you could, it just sometimes reaches the point where the two can't survive together any more. 30, 40, or 50 years ago my friend, we would have been added to the list of women who passed from pregnancy toxemia. But we are still here! It may not feel so great yet, but it gets better in time. :) There are so many medical advancements every day! Don't blame yourself, unless you've had it before, no one sees it coming and more doctors each day are being trained to look for it. Just do the best you can given the situations. I'm sending lots of love and prayers your way.  And if you need ANYTHING feel free to contact me!

~J

post #5 of 32
Thread Starter 
Thank you so much for your kind words. Touched me so much it made me emotional but that's those hormones going on still too.


And jade Ty for sharing your story. I knew what pre e was but not HELLP and so when I was admitted to the hospital and then transported to a near hospital with a nicu I had no idea how serious my condition was and really no one else I talk to knows what it is or what it's about or how serious it is either. So it all took me by surprise. I'm on blood pressure meds right now and I can tell when my bp is too high. I get shaky , blurred vision, decreased urine output and a slight headache well I did too much today and got all those symptoms at once today. I really gotta take it easy on myself ...I don't think that reality hit me that I could have died. I still have fluid surrounding my liver and a few other organs. Sucks though I want to be well. For my son ... Ugh.


We plan to go see my lil man here soon but right now I'm recovering in bed since I decided to over do it. Hope I feel better soon so we can go see him.



Did any of you do kangaroo care???
post #6 of 32
Quote:
Originally Posted by Knicole View Post

Thank you so much for your kind words. Touched me so much it made me emotional but that's those hormones going on still too.
And jade Ty for sharing your story. I knew what pre e was but not HELLP and so when I was admitted to the hospital and then transported to a near hospital with a nicu I had no idea how serious my condition was and really no one else I talk to knows what it is or what it's about or how serious it is either. So it all took me by surprise. I'm on blood pressure meds right now and I can tell when my bp is too high. I get shaky , blurred vision, decreased urine output and a slight headache well I did too much today and got all those symptoms at once today. I really gotta take it easy on myself ...I don't think that reality hit me that I could have died. I still have fluid surrounding my liver and a few other organs. Sucks though I want to be well. For my son ... Ugh.
We plan to go see my lil man here soon but right now I'm recovering in bed since I decided to over do it. Hope I feel better soon so we can go see him.
Did any of you do kangaroo care???

 

Kangaroo care is essential!  Do it as often as you can.  There are only benefits - encourages bonding, helps baby regulate his temperature, helps weight gain, and helps regulate heart rate.  My hospital really encouraged it.  When I was too sick to visit my son for long while I was still in the hospital, the NICU nurse had my husband do kangaroo care.  He said "But my chest is really hairy!" and the nurse said "Too bad, take your shirt off!"  LOL.

 

When my 34 weeker was born, she was stable enough to not have to go to the NICU until she was a few hours old and exhibited symptoms of mag. sulfate toxicity (I had been on mag. for a week).  As soon as the nurses finished making sure she was doing ok, they had me do skin-to-skin with her, even while still in recovery (I had a c-section).  

 

Kangaroo care is so important for these little ones.

post #7 of 32

I did kangaroo care for as often and as long as they would let me.  My husband didn't because he travels alot for work. You definitely need to take it easy!!! At least until your fluid goes down.  The more you do, the more fluid will build up.  We stayed at the Ronald McDonald house that is just up the hill from the hospital our NICU is in. I would go to the NICU in the morning (Drive down the hill because I wasn't healthy enough to walk it) and stay in the NICU/hospital (the nurses would make me go eat lunch lol) until evening or my husband would come and be ready to leave.  The first few weeks though I couldn't do hardly anything and was in a wheel chair most of the time. :( That was the hardest.  Sitting there in the room and being able to see the hospital and not being able to be there with my son.  I lost two in my early 20s and then was infertile until Nathaniel came along when I was 30. I was scared to death that I'd loose him as he is my only chance at having my own biological child. 

Keep an eye on your blood pressure.  My BP went back to normal suddenly (I'm thinking it was once I got rid of the fluid my heart could keep up) while I was still on meds and it dropped all of a sudden and almost landed me back in the hospital a third time (first was delivery, second was congestive heart failure because they released me too soon). Definitely take it easy. HELLP is a bad thing to have had.  The good thing is you can recover now, but it will take time. 

One tiny thing of advise, wait a while before getting new glasses.  It doesn't hurt to have your eyes checked but my prescription changed this last and now my eyes are almost back to my old prescription. :)

Listen to your body, take it easy, and definitely do Kangaroo care.  I know it did wonders for my son.  One day he was having such a bad day, they let me hold him for 3+ hrs because the only time he didn't set off the alarms was when I was holding him.  It helped me too, so much, in my recovery to be able to spend that one on one time with him.  You feel he should still be with you, and I pretty sure he feels the same way.  The kangaroo care will help with that a TON!

post #8 of 32

lol sorry, that is "if you have glasses". :) I had my eyes checked because I even to this day have a blind spot. That's all I had though, no blurry, just a blind spot. 

post #9 of 32
Thread Starter 
Hello ladies thought I'd post an update and question.

Went and saw the lil man yesterday and was surprised to see that he was not only not on the jaundice lights but also not in an incubator. We also fed him from a bottle . He almost took all of it by mouth ...all but less than .5 oz actually even less. The problem is right now his lack of weight gain. Today is day 8 in the nicu and he has only gained 1 oz. so I am hopeful he starts packing some weight on soon.


And nowmy question....my husband came down with a cold. greensad.gif. I honestly am pissed about it because I know your contagious before you have symptoms and we were with our boy yesterday so I knowi should not be but I'm angry at my husband for possibly jeopardizing our sons health but I knowi gotta let that go I'm sure he did not know he would catch this cold :/. On that note should I wait to see him too since I'm around his germs ? And did any of you get sick while your babies were in the nicu? If so what did your nicu tell you? I plan to call them today and ask ...
post #10 of 32
I was lucky and didn't get sick the whole time. But I met parents who did and stayed home a day or two. There is no shame in that. It is not only your child at risk in the nicu. By the same token, your husband didn't mean to get sick and may not have known for sure he was getting sick. But it is definitely understandable to be mad at the situation. I would definitely ask the nicu, and if they do tell you to stay home a bit, don't take it too harshly. It is worth it to protect your child.
What do you mean by him not being in an incubator? What kind of bed is he in? My son was in the warming tray until he hit 4lbs, then the isolette until he could hold his body temp, and then a roll able bed that looked a little like a Rubbermaid tub. The first week is usually the easiest time (according to my sons doc) because they are still using nurishment from the womb. It is normal for them to loose a little and gain it back. I'm definitely praying it comes back quickly and easily.
Back to the beds, there are a million reasons for them to change, it never hurts to ask. My son had his heart run away with svt and he got moved back to a warming tray so they could reach him easier. They could have just needed to use the other bed somewhere else. I want to keep typing but my phone is acting up. I say ask the nurses about the bed. They won't mind.
post #11 of 32
Sorry. Finished waking up and reread your post.: ) congrats on the Los of the billi lights!!! It sounds like the little guy is doing really well!!!: )
post #12 of 32
Thread Starter 
He was in an isolette type bed but is now in a basin like bed thing.


Well we hit a big milestone today. I was able to. Successfully breast feed him. He latched on great right away and we heard him swallowing it was so awesome ! The only issue we have is he is a bit of a sleepy baby at feeding time...I spent four or so hours with him today. Momma and son time since the hubby is sick. He feeds soooo much better for us than the nurses, but what has kind of annoyed me with the nurses is they are not as patient with him like we are. So if he doesn't get through a bottle in sufficient time they are very quick to tube feed. I know they have other babies to take care of but this bothered me as one of the criteria to get him home as you all know is taking food from a nipple. So my hubby and I can get him to take near the whole bottle while nurses cannot. I am going to start the kangaroo care tomorrow because I def think the more time we can spend together the better he will begin to thrive.
post #13 of 32
Thread Starter 
He was in an isolette type bed but is now in a basin like bed thing.


Well we hit a big milestone today. I was able to. Successfully breast feed him. He latched on great right away and we heard him swallowing it was so awesome ! The only issue we have is he is a bit of a sleepy baby at feeding time...I spent four or so hours with him today. Momma and son time since the hubby is sick. He feeds soooo much better for us than the nurses, but what has kind of annoyed me with the nurses is they are not as patient with him like we are. So if he doesn't get through a bottle in sufficient time they are very quick to tube feed. I know they have other babies to take care of but this bothered me as one of the criteria to get him home as you all know is taking food from a nipple. So my hubby and I can get him to take near the whole bottle while nurses cannot. I am going to start the kangaroo care tomorrow because I def think the more time we can spend together the better he will begin to thrive.
post #14 of 32

I'm so glad to hear he is doing so well!!! I'm glad you are able to breastfeed him as well!  It's not unusual for them to be sleepy while eating.  Since they eat so often it is probably a good thing that the nurses don't push them too hard, so they are not still worn out come time for the next feeding.  It's all about building up stamina so they will be strong enough to get all their nutrition once they go home.  We were very lucky, our nurses were patient and I swear they could feed a rock. :) 

I've forgotten, maybe you can help me remember.  I wasn't able to breastfeed because I was maxed out on so many meds, but how do they keep track of how much he eats when he breastfeeds? Is it a weight thing? I'm trying to remember and can't.

post #15 of 32
Thread Starter 
Yeah it was explained to me today that they wanted me to keep track of total minutes of suckling then they calculate it off that some how ...

I saw one the doctors today, think he was a physical therapist? He said Liam (sons name smile.gif. ). Is doing so well he doesn't expect him to be there very much longer though that could still be a few weeks . We will see. It's up to him. He will be at 36 weeks gestation here on Friday and two weeks old on Saturday smile.gif

Today we were able to breast feed again but had a lot of trouble at the right breast. We couldn't get a good latch and everything felt awkward but I'm taking a nursing pillow with me tomorrow because the pillow they gave me today was totally flat and I need something bigger to get him to the breast since he's so small.
post #16 of 32

It sounds like your son is doing really great!!  :D  That's awesome!

 

My son was born at 33 weeks due to severe pre-e & HELLP.  He spent a month in the NICU.  I didn't have a husband and had to handle the whole NICU thing on my own.  (I left my abusive ex early 2nd tri).  My parents took care of my DD for me so I could be at the NICU as much as possible.

 

I remember being really frustarted about the feeding and how it seemed the nurses would jump to tube feeding him quick... but I also realized that pushing him too much wore him out too much, because once they let me try feeding him longer, and then he absolutely would not wake up for next feed.  The nurses do know what they are doing and know the baby is working hard on so many things.  Just think, your babe would still be inside of you right now, but he's already taking feeds at the breast and managing his temp!  That's HUGE!!

 

So, as crazy frustrating as it is, trust me, I remember it well, it's good to try to go with the flow as much as possible and let your LO gain all his strength. You will all come out of this so much stronger.  *hugs*
 

post #17 of 32
Quote:
Originally Posted by Phoenix~Mama View Post

It sounds like your son is doing really great!!  :D  That's awesome!

 

My son was born at 33 weeks due to severe pre-e & HELLP.  He spent a month in the NICU.  I didn't have a husband and had to handle the whole NICU thing on my own.  (I left my abusive ex early 2nd tri).  My parents took care of my DD for me so I could be at the NICU as much as possible.

 

I remember being really frustarted about the feeding and how it seemed the nurses would jump to tube feeding him quick... but I also realized that pushing him too much wore him out too much, because once they let me try feeding him longer, and then he absolutely would not wake up for next feed.  The nurses do know what they are doing and know the baby is working hard on so many things.  Just think, your babe would still be inside of you right now, but he's already taking feeds at the breast and managing his temp!  That's HUGE!!

 

So, as crazy frustrating as it is, trust me, I remember it well, it's good to try to go with the flow as much as possible and let your LO gain all his strength. You will all come out of this so much stronger.  *hugs*
 

I loved reading your post Phoenix~Mama.  It's so amazing what these little ones can do before they would typically need to. :)

post #18 of 32

Hi, Knicole.  Father of preemie twins here.  Hang in there.  It is normal to feel a raft of confused emotions when your got-here-too-soon baby is in an isolette.  But take it one day at a time and don't give up.  In a few years when you have a big healthy boy running around the house you'll look back on this and wonder how you made it through - but you will.  One day at a time.

post #19 of 32
Thread Starter 
Hey all...I'm having a really hard time today, I feel so sad. All I want to do is cry. Today is day 17 of Liam in the nicu. What is not helping me is when I go to the nicu I see nearly every time some one bringing home their baby. Or like today I see other babies in the nicu sitting in a car seat doing an oxygen test meaning they get to go home soon. I hate it... I hate this.
post #20 of 32
Quote:
Originally Posted by Knicole View Post

Hey all...I'm having a really hard time today, I feel so sad. All I want to do is cry. Today is day 17 of Liam in the nicu. What is not helping me is when I go to the nicu I see nearly every time some one bringing home their baby. Or like today I see other babies in the nicu sitting in a car seat doing an oxygen test meaning they get to go home soon. I hate it... I hate this.

 

hug2.gif

 

Hang in there.  One day in the not-too-distant future, it will be Liam doing that oxygen test, I promise.  As hard as it is not to bring your baby home, you wouldn't want to bring him home before he's ready.  And it's SO hard waiting for that readiness, but it can't be rushed.  I remember seeing other 32-weekers discharged at 3-4 weeks and wondering why mine was taking so long, but he just needed more time.  When I think that DS was in the NICU for 6 weeks, I don't know now how I got through a month and a half of that, but I did get through it and it was so long ago now that I have so many more memories out of the NICU than in it.

 

One very exciting day for me (besides his homecoming of course) was the day when he had been home longer than he had been in the hospital.  Try to think of those moments and how you will enjoy Liam when he is home, to try to look forward to what's going to happen instead of getting down about what's happening today.  

 

One strange benefit of having a NICU baby is that when it's your first and he finally comes home, you will TOTALLY know what to do and have a ton of confidence in your parenting because you've been practicing with supervision for so long.  :)

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