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Discussion Starter · #1 ·
I don't normally post, but I thought my birth story might be of interest to some of you. I could also use a bit of advice. And I am trying to type while holding my 4 day old daughter.

Short story - this was my 7th pregnancy, after three UCs and three miscarriages. It's been a tough pregnancy, with a lot of early bleeding. I found a local midwifery firm to do a "non-diagnostic" ultrasound at 24 weeks to rule out twins. They could only find one. As I run a small store and am constantly with lots of people, there was lots of remarks about my size. In hindsight, I probably should have tried to get another ultrasound.

I'd been having gentle prelabor for about a month, when I decided last Sunday that this was the real thing. Once we got home, though, it wasn't really progressing, and I felt comfortable enough to go to bed. Slept for about two hours, finally got up again around 2:30, clearly in active labor. Since my labors are always long affairs, I decided to let my husband sleep, and headed downstairs to turn on some labor music.

About 45 minutes later, surprised that I was being awfully vocal already, I sat down on the toilet and my water broke. I reached down and caught a small butt, with two legs to quickly follow. One more push and my daughter was out, pink and crying. Yelling for my bewildered husband, I headed to our living room. Easiest birth ever - and I caught her! I was ecstatic.

Within a few minutes, she latched on. As they usually are expelled fairly quickly, I was a bit surprised that my placenta didn't arrive. An hour passed, then an hour an a half and the afterpains I thought I was feeling magnified. Finally, again on the toilet, I tried pushing a little and something popped and lots of clear fluid poured out. Starting to worry a bit, I reached up and felt another butt, then legs slipped out. And then stopped. I screamed for my husband that there was another baby. I tried again to push his head out, but nothing happened. I changed positions, while my husband called 911, and tried pushing again. The 911 operator told my husband that I needed to be on my back, which was completely unhelpful. After another push did nothing, he reached inside and slid a stuck arm down, and the baby finally slid out. I didn't know this is what he did till days later - how he had the wherewithall to do that, with me screaming, is beyond me. He is amazing, in my book.

My son was not breathing, and not responsive, but was pink and looked good. I started rescue breathing - and the paramedics arrived. Literally, I think it was no more than 10 minutes from the time we realized we had another baby coming and their arrival. They immediately got a heartbeat, and intubated him. They somehow talked me into getting on a stretcher, after I delivered that single placenta, and lots of blood. I didn't know it, but they also manged to get my husband to hand over our daughter to them, who arrived at the hospital sometime after me. They decided to medivac my son, although he also arrived after me.

They shipped me to labor and delivery, who about freaked at the amount of blood. I tried explaining that I just need to walk around and release the clots and I would be okay, but they tried massaging my uterus (I about lost it; that was excruciating!) and insisted on a pelvic exam to check my cervix. All was fine, other than their concern about the blood loss. I signed myself out AMA. Meanwhile, my husband and other children had been reunited with our new daughter. It was over an hour till they could tell us anything about our son.

Finally, they allowed us upstairs to NICU. This has to be one of the worst experiences - so see your newborn covered in tubes, on a ventilator, unresponsive. We were grateful that he was stable, at least.

Over the next day, he became much more responsive, and the intubation tube was removed. Because of "possible seizure activity", he had been placed on phenobarbital, and had to wear a cooling cap till yesterday. All blood tests have come back stellar - to our knowledge, all major organs are functioning well. Today - day 4 - after nearly losing it completely in the NICU nursery after the attending told me we couldn't start nursing because he wants to use a bottle first - I finally got to hold him. They will be conducting an EEG in the morning. And an MRI on Monday. I am concerned that he seems very groggy. When he is awake, he will follow you intently, and grasp your hand, but he doesn't cry or exhibit many other facial expressions.

Maybe it's because I am 4 days postpartum, but I have been near (or in) tears all day. Holding our new son didn't help at all, considering his head's all mishapen from lying still on his back for days, and he looks very puffy from all of the fluids they've been giving him. I just want him home, but really I just want a second healthy newborn, and I am terrified about what is going on.

April
 

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Congratulations and hugs! What a dramatic entrance.

Hopefully someone more experienced will have more useful information to share. My first thought, though - could your son be groggy from the medication? Maybe it's making him really out of it.
 

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Oh, mama. First off, congratulations, and what aquick thinking hubby you have! I am sorry you are going through the NICU mess right now, and I pray that your precious boy will be home with you, soon.
hug2.gif
 

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I know what you mean about how awful an experience it is to see your child in the NICU. Fact: The NICU is a place where people cry. Some nurses, for reasons beyond my comprehension, are continually surprised by this, but most of them are pretty good.

I think that the babe following you intently and grasping your hands is a great sign. Those are fantastic things. I hope that the upcoming tests give you reassuring news, and that your whole family can come home soon.
 

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I am so sorry that people who did the ultrasound were incompetent. I am sorry that things did not go well for yourr child. I understand that the hospital can seem like a scary and hostile place but the NICU doctors and nurse have one goal in mind. The goal is to preserve your son's brain function and allow him to have the healthiest life possible. Sometime it requires measure that seem cruel from outside such as blood draws, tubes, catheters and even bottle feedings.

Request a meeting with the doctors, nurse and the social worked. You have the right to know what the treatment plan and prognosis is. Hospital probably has a support groups as well that can be very helpful

I Hope all turns out well. Modern medicine made amazing strides as far as treatment of newborns and infants.
 

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Discussion Starter · #8 ·
Thanks for your responses. I also think the Phenobarbital is making him groggy. I tried getting him to latch on today, but just couldn't get him to wake up enough. I pumped lots, though, and they've started giving him that. The NICU staff isn't all in agreement about the effects of a "low maintenance dose" - and suggested that there may be other neurological issues going on.

Last night they also decided that the short EEG that they did was sufficient. (But didn't tell me why, so I worried and cried half the night, thinking it was bad news.) The results indicate there is no seizure activity, though they also won't say the results are normal, either. But I think this is sufficient grounds to take him off the Phenobarbital. The attending refused to make the call, so we have a meeting scheduled for tomorrow with the neurologist.

If anyone has any resources regarding getting sleepy babies to latch, I'd be really grateful. This is our last hurdle - if we can nurse, and he can gain weight, we can take him home. And even though it probably sounds naive to say I think my milk might make the difference, I'm really hoping that this is my one superpower right now.
 

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I tickled my baby's feet when he was sleepy.

However, do not worry so much about latch right now. The neurological status is more important . There other way to feed the baby so he can gain weight.

Bottles are not evil My baby was breastfeed and I pumped because I went back to college 3 days after birth.

To me, nipple confusion danger is really overstated.

Meet with the neurologist after MRI as well. You are right, the attending will not calls the shot without neurologist. Brain is way too precious and neurologist it the right specialist to call the shots in this situation.

When time come for discharge planning, write everything down if they do not give you printed instructions. it is hard to remember everything Follow visits are very important.
 

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Discussion Starter · #11 ·
I agree - I am trying hard to not be militant about such things. Frankly, in this situation, it's a whole lot easier than I thought it would be - I was just so grateful that I have such an enormous supply and I could hand over 6 containers of expressed milk, and more in reserve, with lots left over for his sister. I am planning to spend much of the day there tomorrow, trying to latch, but really just holding and hoping his sleepy state improves.
 

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IBCLC/LLLL here. I would really encourage you to follow the doctors' and nurses' recommendations for now. For healthy newborns who are drinking at the breast vigorously, there is flexibility in working with care providers regarding their feeding recommendations if you don't agree with them. For babies that are fragile, it's essential to follow medical recommendations about health issues, while still letting them know that you would like to do skin to skin, pumping, and feeding as much breastmilk as medically appropriate. Doing skin to skin with your other baby will also help your milk supply.

I know you probably feel terrified and helpless. Now is a time to as much as possible put your trust in the medical experts who have the training and education to help sensitive babies have the best outcomes. Hugs.
 

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IBCLC/LLLL here. I would really encourage you to follow the doctors' and nurses' recommendations for now. For healthy newborns who are drinking at the breast vigorously, there is flexibility in working with care providers regarding their feeding recommendations if you don't agree with them. For babies that are fragile, it's essential to follow medical recommendations about health issues, while still letting them know that you would like to do skin to skin, pumping, and feeding as much breastmilk as medically appropriate. Doing skin to skin with your other baby will also help your milk supply.

I know you probably feel terrified and helpless. Now is a time to as much as possible put your trust in the medical experts who have the training and education to help sensitive babies have the best outcomes. Hugs.
 

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It's so hard to be patient for testing, and for the right doctors to be on. It completely sucks.

And the NICU in general sucks - saves babies, works miracles, and is about the least pleasant place you'll ever be, in about the worst mental state you'll ever be in. Give your emotions some running room. Cry when you need to. Take care of yourself. And indulge any whims you may have about bringing your son his own things - blankets and hats won't get tossed in with the hospital laundry, birthday cards will move with him, and there are some arguments that these things actually make a difference for fragile infants. No proof, but the nurses in our NICU were believers, and that stuff made me feel a little better, so I'm in favor.

I don't know how much holding is practical right now, but that's likely to help you both as well.
 

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Discussion Starter · #15 ·
So he's been progressively less sleepy - he gave nursing a really good attempt yesterday. Our meeting with the neurologist didn't achieve the results I wanted, but it did give us more perspective, I think. They insist, for one thing that they have much smaller babies on much higher doses of Phenobarb and they are not groggy and can latch on fine. So my son's issues are probably not the drug, but more an issue of his brain needing to heal. And I am optimistic that that is happening - he was more animated yesterday - even made some little noises. He doesn't have such a vacant expression. It's doubly hard, I think, having his sister with me - as much as I know it's unfair to compare, I always have her as this benchmark for what he should be doing.

There are still concerns about his gag reflex, but there was a little good news, too. He gets a bit raspy, probably because of his lying position, and was able to cough yesterday, and nicely cleared up the raspiness himself.

His neurologist/physician/nursing team also agreed with what a few of you relayed above - to some degree, the more external effort he has to make, such as through holding and moving and trying to nurse, is less energy his body has to focus on brain healing. I've been trying to remember that, even though I get pretty choked up typing it here.

Put myself on a bunch of different postpartum herbs, and restarted my prenatal (I had been experiencing lots of nausea during this last month, and the vitamins seemed to make it worse), and I think I am a little less on edge. Been trying to accept help from friends, too. I defended my dissertation last year this time - that was cake compared to this.
 

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Oh mama this must be so heart wrenching for you.
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I'm glad he seems to be doing better. Thank you for sharing your story and I hope we can be of some support.

I agree about the bottles. Yes keep trying to nurse but don't think bottles will lead to failure. Do what you've got to for now. BM is amazing stuff and I hope it will heal him.
 

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One thing that helps when you meet with doctor is to have prepared questions. Just write them down and go one by one.

I would ask something like that

1) What degree of brain damage my child suffered in your professional opinion?

2) I know every child is different, but from your experience, what sort of deficit we may experience down the road?

3) What additional treatment should we provide after we leave the hospital? Thing such as OT and PT?

4) How often should my child be evaluated by a neurologist after discharge?

5) How high is possibility of learning disabilities in the future?

6) Who can we see to find out about community recourses and support?
 

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hey, how is your son? i hope things are getting better for you all. you've not been forgotten.
 

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Discussion Starter · #19 ·
We're hoping to get him home today. We had a discharge plan for Friday - they had taken him off the Phenobarb and everything had been completed except for a final EEG. As it turned out, the EEG was deemed abnormal, so they have him back on Phenabarb, and have renewed their insistence that he is at risk for seizures. He also lost an oz from birth weight, and apparently babies can't leave until they are back up to birth weight or higher. It was a really emotional day.

So, I've been spending lots of time with his twin camped out in NICU, nursing and pumping for him. I agreed to bottle feed for several feedings a day, with a formula supplement added to help him gain weight. Anything to get him home...

He's still a lot sleepier than his sister, which concerns me. We're asking for a repeat EEG in two weeks, hoping that the results will be normal enough to remove him from the Phenobarbital.

Meanwhile, I don't know how I'll ever manage to get the house clean. And no one's eating well, and we're all exhausted. Been a long two weeks. It can only get better...
 

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i don't see a location but odds are you don't live near me or i would help with the house and cooking. i hope you are able to bring him home very soon! i would give the formula, for weight issues. don't wear yourself down more than you have to! i hope also you are able to enjoy your baby girl during this time. i feel this would be very difficult! happy mother's day!
 
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