Full/Near-term NICU support thread-- May/June 08 - Page 3 - Mothering Forums
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#61 of 135 Old 05-27-2008, 01:34 PM
 
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The one night that they made me leave her (discharged me and kicked me out, but she had to stay another night - only one, but still) I cried so much and so hard that not only could I not function, my right eye swelled completely shut. I just couldn't bear it. I don't know how anyone survives longer stays/surgeries, etc. other than that there's no other option.
I can relate to crying like that. Its so awful I don't know how anyone survives it for longer either. My son was born on a Friday and on Monday I woke up crying, couldn't eat, couldn't talk, just cried. I literally craved him, that sounds so weird but its true. I went to visit him and they said that they were admitting a baby so it would be an hour before we could go in, then when we went back it was shift change, another hour we couldn't get in. I finally got in, walked to his side and he was asleep. The nurse said "do not touch him, I don't want a crying baby on my shift". I lost it. I have never cried so hard in my life.

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Wife to Eddie. Mommy to Jamie (4), Allie (2) & Luke (born 11-14-11)

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#62 of 135 Old 05-27-2008, 03:10 PM
 
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My firstborn was a 42 weeker with a 4 day stay in the NICU. They didnt know what was wrong with him...he was constantly shaking and his eyes wouldnt stay in one spot-like he'd try to look at you and they'd roll up into his head. They thought I'd been on drugs at first, then they thought he was having siezures, then they didnt, they just didnt know what was wrong. He was realeased with a dx of *immature nervous system.* He later went on to get a diagnosis of epilepsy (at 6 months old) but the issues at birth faded in the first few months.

It was awful having him there, he was healthy otherwise and he would stop shaking when I held him, but then they'd say oh, he needs to be put back down. I was only 18 so I didnt feel like I could be pushy on anything, but it killed me only holding him for a few minutes and then being told to put him down. I wanted to hold him constantly! They also had an hour every 12 hours that no parents were allowed in the nicu and my room was just on the other side of the wall from my son. I could hear him screaming and wasnt allowed to go in to comfort him. I'd just cry with him in the other room. What made me even sadder was the lack of OTHER parents there! The NICU was FULL of babies-I think they had 8 beds and all of the others were preemies of varying degrees. Some of the babies never had visitors, others I'd see the parents once a day for maybe 20 minutes. I know people have work and real life and stuff but...I was there 24/7 and I couldnt imagine not being there.

Cari-mama to Eriq, Lile, Paikea, Kaidyn, and Mieke is here!! 2/9/10
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#63 of 135 Old 05-27-2008, 10:35 PM
 
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Thanks for making this thread. I have read the others and there are a few stories that sound similar to mine. I am subscribing.

I had a big baby with grunty breathing (who was still grunty 3 months later BTW). It took 33 hours to have him (with 3.5 hours of pushing) and it was almost another 33 hours before I was allowed to hold him. For no damn reason. He was there almost 5 days because the weekend was in the middle and no one would really look at him until Monday!

My son was never on the brink or anything, just grunty from the birth with low liver levels from decreased O2 at some point. He was never on anything other than room air, never had any tube but the IV. His intial apgar was a 2, but they never needed to even give him anything but a flick of the heels.

Most of the reason I couldn’t hold him was because he was a big healthy baby – the IV’s were hard to do and they put an umbilical line in. Once they did that, no one would let me hold him. In the middle of the night a nurse asked if I wanted to, I almost died of shock at the chance. Once it was all done, and he was back in the box the on-looker nurse said that it was completely against policy and that she would NEVER have let me hold him. Guess who was my evening nurse until we were released? Yeah. I had a screaming fit in the hallway after one encounter with her.

I spent months angry and regretful, I dwelled on it and especially one the one moment, before the umbilical line was put in, that I wanted to hold him and they said they just got him settled and didn’t want him to cry. DH said he was tired and we should just go rest – but I was on a birth high and wanted my baby. Neither of us knew that in a couple of hours he would have the line and no one would let us hold him then.

No one ever called us down for anything. We wanted to do and be a part of everything. Please, please call us when he needs a new diaper or needs to be cleaned. We want to help. Oh and don’t dream of just wanting to sit there and look at your sleeping baby – come back when he is awake – but how would you know if NO ONE EVER CALLED YOU! When I came down to find his hair washed – I was livid, but then the nurse changed and the new one promised she would be better. He was there 3 days when we were asked his NAME!!! We wrote it on the box, but no one ever asked before and his chart was missing that particular piece of info.

When I was finally allowed to feed him after 48 hours – more like 52 by the time anyone got around to it, it was one measured bottle of EBM and then when I went to hold him next I was told to gown up – when I didn’t get how I was s’posed to feed him the nurse said “Ohhh – your BREASTfeeding?!, well it will be a bit before you can do that.” She left to help another mother bottlefeed. She wanted me to feed him through the holes in the box with a bottle.

Oh and the mis-information? My son’s chart said meconium aspiration, when his birth record showed nothing below the cords, and his actual birth record says c-section when he had a vaginal, albeit forceps birth - hell he had a mark from that on the side of his head! I wonder if they treated him in ways that were completely unnecessary due to these errors.

I also know that the day he was born, another 11 lbs boy with the last name also starting with H was air lifted in. He had meconium aspiration and was a c-section. I overheard this while trying to pretend we couldn’t hear or see anything as is NICU custom. Most nurses that had my son also had this baby – so that they wouldn’t have to switch to teeny baby mode probably. They looked enough alike that I walked over to his box at one point in error. I know that this baby was sick enough that he was still there when we left.

Oh and they all kept saying that he was post-mature. He was 41 1/6 gestation according to his records, with few signs of post-maturity. He was even earlier according to my own dates, which were never considered. Also, it was wildly assumed that we were gestationally diabetic, but all tests came back negative. Just a big baby.

He remained in hospital with me for a few days after on IV antibiotics for his possible infection – with a tube in his head – which apparently they could have always done no problem. They apparently just didn't want to shave his head at that point without reason .

The situation leaves me with a complete lack of faith in the medical establishment, but oddly enough still terrified of home birth KWIM? I do sometimes wonder about PTSD. I certainly felt it when I took my DS back to visit another little baby. I felt like running when I left.

Even with the horrible pregnancy, extreme sickness and swelling with carpel tunnel, and the difficult birth complete with 3rd degree tearing and one permanently numb thigh, it is the NICU stay that prevents me from wanting another child.

Whew – this is the closest I have ever come to a birth story. Maybe one day I will be able to write something that wouldn’t have such a bitter aftertaste – something for the baby book.

Thanks for this thread. I really needed it.

Mother to a wonderful 4 year old boy born March 2007 who was once fuzmalesling.gifbfolderchild.gifdiaper.gif and still familybed1.gif

Starting once more from the beginning and  expecting bigeyes.gif a surprise someone pos.gif in September

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#64 of 135 Old 05-27-2008, 10:48 PM
 
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Wow, Kat, I am so sorry that you had to go through that. I think that NICU nurses really do need sensitivity training. It seems like most of them are this way.

Angie,
Wife to Eddie. Mommy to Jamie (4), Allie (2) & Luke (born 11-14-11)

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#65 of 135 Old 05-28-2008, 01:08 AM
 
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Whew – this is the closest I have ever come to a birth story. Maybe one day I will be able to write something that wouldn’t have such a bitter aftertaste – something for the baby book.

Thanks for this thread. I really needed it.
I'm sorry momma. I've tried to write my birth story several times and I just can't do it. I think I need to and will at some point, but not yet...

I hope writing that all down helped you in some way - and knowing others are here and care.
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#66 of 135 Old 05-28-2008, 01:31 AM
 
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Mine was the closest to a birth story, I have ever done too. I have only let out bits and pieces here and there because it is so unbelievable, I am afraid no one would believe me. But after reading more, I see how common my experience is and I find it to be really messed up. Then none of us do anything about it because we are just so glad to be out of the situation and forget about it, only you can't.

I am really NOT happy, after reading these posts. I HATE HATE HATE how freaking ignorant doctors and nurses can be. Doc'snemesis (LOVE the name) and Kat-soshi, I am really sorry you had to go through the double trauma of being misunderstood and treated insensitively in the midst of a trauma.

Jillian, I ABSOLUTELY have PTSD.
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#67 of 135 Old 05-28-2008, 05:02 AM - Thread Starter
 
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I have to say, I didn't have to deal with a lot of the issues you ladies faced. Our NICU was beautiful, the nurses were fantastic, the hospital was full of supportive people. There were very few problems related to the hospital staff; Most of the problems were in my head, especially with Bella. I just could not begin to accept that I'd failed at birth *again*. I mean, the first time was the first time, I'd never had the experience and I learned. The second birth was an emergency (even the most militant UCers have said, "Yeah, for a prolapsed cord I'd go to the ER), so things were out of my hands but at the same time, things went really well. With Bella, though... when she went to NICU I about lost it. I'd go in to see her and they'd say, "How are you doing?" and I'd say, "I want my baby, I want to take her out of here, when can I take her out of here?" I just couldn't get past it. I remember going back to my room and just sobbing hysterically.

But you know... when I went back to my room, the bed had inevitably been made up, and the breastpump was ready for me, and things were decent in all other ways. I was so happy to get her out of there, though.

Rynna, Mama to Bean (8), Boobah (6), Bella (4) and Bear (2)
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#68 of 135 Old 05-28-2008, 08:51 AM
 
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I have to say, I didn't have to deal with a lot of the issues you ladies faced. Our NICU was beautiful, the nurses were fantastic, the hospital was full of supportive people. There were very few problems related to the hospital staff;
I am glad to hear this. The LAST thing one needs when dealing with a situation like this, is ignorant and insensitive people.



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Most of the problems were in my head, especially with Bella. I just could not begin to accept that I'd failed at birth *again*. I mean, the first time was the first time, I'd never had the experience and I learned. The second birth was an emergency (even the most militant UCers have said, "Yeah, for a prolapsed cord I'd go to the ER), so things were out of my hands but at the same time, things went really well. With Bella, though... when she went to NICU I about lost it. I'd go in to see her and they'd say, "How are you doing?" and I'd say, "I want my baby, I want to take her out of here, when can I take her out of here?" I just couldn't get past it. I remember going back to my room and just sobbing hysterically.
Awwww, elonwy, that is sooo sad. I read these stories and my heart goes out to you women who had to deal with the trauma of being seperated from your baby at birth. I couldn't imagine. eeek, just thinking about it makes me feel funny inside. When I was leaving the hospital, they suggested I leave the baby there, and I flipped out, just at the thought!!. I think more awareness is needed for the psychological trauma of the mothers whose babies are put in NICU, so that they are guaranteed the emotional support that is needed.

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But you know... when I went back to my room, the bed had inevitably been made up, and the breastpump was ready for me, and things were decent in all other ways. I was so happy to get her out of there, though.
I don't hink it would have mattered if you were at the Plaza Hotel, nothing is right until you have baby where he she belongs. WITH YOU!!
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#69 of 135 Old 05-28-2008, 09:05 AM
 
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Thanks for reading it all - really - I need to write it all out I think - there was good along with the bad, and most of the bad was the nurses treatment of me. I need to remember the good too.

There is a real feeling in NICU that the babies belong to the nurses, not the parents. In the PICU they wouldn't dream of denying a child their mother if at all possible. In the NICU, well you have only been their mother a few hours right? They don't need you yet.

When I first saw him he was whimpering. I asked if I could touch him to calm him and the nurse said to me "They don't like it when they are stroked, it just upsets them more." and that was the first thing said to me concerning my son. You are incompetent. You can't do anything right. I wanted to scream at him, but I was in shock (in more ways than one) and I obeyed. When he left I put my hand in and lay it on his thigh, he quieted. I wanted to tell him my son was no preemie that couldn’t handle the world - he was an 11.2 lbs big baby boy. I wanted to let him know I wasn't completely ignorant, that I had read the NICU boards and that I knew not to over stimulate a preemie.

When I go back in time in my mind, I tell that nurse off and open the box to hold my son. I don't dwell on this scenario daily, hourly, like I once did. But it's still there. The only tubes were his IV, his BP and HR/breathing monitors and that's it. He was on room air. I blamed my DH a lot over the year. He asked me not to put up a fuss, to leave him be. They were right, we were tired and should go back upstairs. When we returned, it was too late and they had that f-ing umbilical line in, unsecured at that time even.

If we ever have another child, there will be a NICU contingency plan - we will have groups of people waiting in the wings to take shifts watching our child. With Ro, they asked if we wanted anyone else to have permission to visit without us, we didn't see the need. We trusted that he was being cared for. But next time we will make sure someone that knows us, calls us when they are taking him away for x-rays or when screams for 15 minutes inconsolably, or when he gets a bath.

I am glad to hear that there are good NICU’s out there. I think one of my biggest problems with it, it that I don’t feel my child belonged there. He wasn’t in trouble or dying. I think they would have been more companionate had he been really sick. As it was, I was just a hassle.

Do you know that I was always told that the best thing I could do for my baby was to go upstairs and pump – and it wasn’t until the last day that I noticed that there were pumps that you could use in the NICU at bedside?

I dream of a NICU with a bed for the mother and the incubator for the baby - beside one another.

Mother to a wonderful 4 year old boy born March 2007 who was once fuzmalesling.gifbfolderchild.gifdiaper.gif and still familybed1.gif

Starting once more from the beginning and  expecting bigeyes.gif a surprise someone pos.gif in September

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#70 of 135 Old 05-28-2008, 12:41 PM - Thread Starter
 
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Yes, see; Our NICU had two rooms that were in the unit, and if your baby was not in a warming isolette you could roll him into the room and pump. Breastfeeding mothers who had been discharged could spend the night or most of the day there, and there was a small fridge between the two rooms with clear sodas and juice, and an ice machine, small snacks and things. They advised me to go home and sleep, as I lived very close to the hospital when Bean was born, but I spent a few days pretty much living out of that room, pumping and feeding and trying to nurse my little fellow. It still hurt intensely to go home without him at night, but they really encouraged me to rest as much as possible so that I'd be *present* for him when I was there.

Rynna, Mama to Bean (8), Boobah (6), Bella (4) and Bear (2)
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#71 of 135 Old 05-28-2008, 01:13 PM
 
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Kat:

Have any of you written a letter to the hospital if you've received bad care? PLEASE do - even if it is a year later or more, they keep record of everything for several years. They take the letters seriously. We wrote a letter to the ER that almost sent us home when Evan was having congestive heart failure. That doctor's error could have cost Evan his life. He knew nothing about babies and was too stubborn to call in the on-call pedi. The hospital investigated everything and changed their policies because of it. We weren't looking to sue - just to change things for future parents.

We wrote a letter to the ER, and to the president of HR and to consumer affairs as well as filled out their survey.

I have to say that the CVICU Evan was in before and after heart surgery was pretty great. There was one nurse I didn't care much for because she always tried to get us to leave, so we just requested our favorite nurse every day and got her The LC was fabulous too. There were free drinks and snacks for us and the LC even loaned me a pump for free so I could pump while driving home to visit DS1. It was HORRIBLE being away from DS1 for those 10 days. But I knew Evan needed me more.

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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#72 of 135 Old 05-28-2008, 01:18 PM
 
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Zann was born at 40w 2 days at home. Straightforward 10 hour labor and I only pushed a couple of times. Apgar were 9 and 10 according to MW, 9 and 9 according to me. Anyway I had trouble keeping his temp up, but if I wore him and kept his wool hat on he was ok. Funny thing is I finished his hat, went to bed, and woke up in labor. I had knitted one earlier but I thought it would be too small and was right. Anyway I think the hat helped save his life. I look back at the pics now and I cannot believe how blue he was, I just thought it was jaundice. I made an appointment with the ped but kept having to re-schedule because the insurance could not figure out how to add him because of the hb. Anyway at 9 days he quit eating. I pumped and syringe fed him. That night he nursed twice and I thought things were looking up. He would sweat horribly, so I would strip him down, then he would freeze so I would bundle him back up. Finally the next morning we were co-sleeping and he was grunting. I thought he was hungry but he would not latch. I opened his pj to change his diaper and he was purple from the neck down. We went to the ER and my ped was there. She said his liver was very swollen and she thought he may have an infection. They did a chest X-Ray and his heart was huge. They had nothing there to help him. His blood sugar was 4 when they checked it the first time. I have no idea how he was breathing. His rectal temp got down to 93. The nurse said "We;re loosing ground, I don't think he's going to make it." It took several hours for the flight team to arrive. They intubated him finally. He was flown to ********** about 2 1/2 hours away. We got there about 20 mins after the plane brought him in, we drove 90 the entire way.

Anyway he has several congenital heart defects. He had severe coarctation of the aorta, which basically means that his aorta was pinched off to almost nothing, so he had that replaced at 2 weeks. He had a VSD, is borderline for hypoplastic left heart syndrome, aortic valve stenosis, his tricuspid valve is onle a bicuspid, and he has some extra tissue in his right ventricle that we are not sure what it is. He had his VSD closed at 4 months because the blood was shunting into his lungs and causing pulmonary hypertension. We are possibly looking at an aortic valve replacement. We go back to the cardiologist on Friday.

The NICU was a total shock. He had so many lines. The night nurse told me if I came in early the night before we could hold him. We went in at 4:30 and held him, I sang happy birthday, it was his 2 week birthday and I did not know if we would see a year. He had about a 75-80% chance of making it through surgery. He was so swollen and weak, his kidneys were staring to fail so we had to do the surgery even though he was having problems. They told me he would probably be brain damaged from all the time he was acidotic. The hospital ER where I brought him first had no idea how to take care of him, although they had the bicarb he needed they did not have it in that dose and nobody knew how to dilute it until the flight nurse got there. Anyway, he's 13 months and is walking and talking. He does drag his one leg a bit but I think that is from his first surgery, they operated through his back and there was a chance of paralysis.

THe CICU was the worst. All cardiac pts regardless of age were on the same unit. I was only allowed in for 20 mins three times per day. Thank goodness he was only in for 2 days. After the second surgery we were sent to a ped cardiac floor. I was able to room in and he could finally breath well enough to nurse again. I EP'ed for 4 months because he could not breathe well enough to latch and he was FTT so I had to add formula powder into my pumped milk. After closing the VSD that has not been a problem. So much more I could post............
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#73 of 135 Old 05-28-2008, 01:26 PM
 
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Zann was born at 40w 2 days at home. Straightforward 10 hour labor and I only pushed a couple of times. Apgar were 9 and 10 according to MW, 9 and 9 according to me. Anyway I had trouble keeping his temp up, but if I wore him and kept his wool hat on he was ok. Funny thing is I finished his hat, went to bed, and woke up in labor. I had knitted one earlier but I thought it would be too small and was right. Anyway I think the hat helped save his life. I look back at the pics now and I cannot believe how blue he was, I just thought it was jaundice. I made an appointment with the ped but kept having to re-schedule because the insurance could not figure out how to add him because of the hb. Anyway at 9 days he quit eating. I pumped and syringe fed him. That night he nursed twice and I thought things were looking up. He would sweat horribly, so I would strip him down, then he would freeze so I would bundle him back up. Finally the next morning we were co-sleeping and he was grunting. I thought he was hungry but he would not latch. I opened his pj to change his diaper and he was purple from the neck down. We went to the ER and my ped was there. She said his liver was very swollen and she thought he may have an infection. They did a chest X-Ray and his heart was huge. They had nothing there to help him. His blood sugar was 4 when they checked it the first time. I have no idea how he was breathing. His rectal temp got down to 93. The nurse said "We;re loosing ground, I don't think he's going to make it." It took several hours for the flight team to arrive. They intubated him finally. He was flown to ********** about 2 1/2 hours away. We got there about 20 mins after the plane brought him in, we drove 90 the entire way.

Anyway he has several congenital heart defects. He had severe coarctation of the aorta, which basically means that his aorta was pinched off to almost nothing, so he had that replaced at 2 weeks. He had a VSD, is borderline for hypoplastic left heart syndrome, aortic valve stenosis, his tricuspid valve is onle a bicuspid, and he has some extra tissue in his right ventricle that we are not sure what it is. He had his VSD closed at 4 months because the blood was shunting into his lungs and causing pulmonary hypertension. We are possibly looking at an aortic valve replacement. We go back to the cardiologist on Friday.

The NICU was a total shock. He had so many lines. The night nurse told me if I came in early the night before we could hold him. We went in at 4:30 and held him, I sang happy birthday, it was his 2 week birthday and I did not know if we would see a year. He had about a 75-80% chance of making it through surgery. He was so swollen and weak, his kidneys were staring to fail so we had to do the surgery even though he was having problems. They told me he would probably be brain damaged from all the time he was acidotic. The hospital ER where I brought him first had no idea how to take care of him, although they had the bicarb he needed they did not have it in that dose and nobody knew how to dilute it until the flight nurse got there. Anyway, he's 13 months and is walking and talking. He does drag his one leg a bit but I think that is from his first surgery, they operated through his back and there was a chance of paralysis.

THe CICU was the worst. All cardiac pts regardless of age were on the same unit. I was only allowed in for 20 mins three times per day. Thank goodness he was only in for 2 days. After the second surgery we were sent to a ped cardiac floor. I was able to room in and he could finally breath well enough to nurse again. I EP'ed for 4 months because he could not breathe well enough to latch and he was FTT so I had to add formula powder into my pumped milk. After closing the VSD that has not been a problem. So much more I could post............
Mama, our stories are eerily similar. I look back at the pics and see blueness now too. Evan's heart defects showed itself at 2 weeks too. I am so happy to hear that he is walking and talking! I hope his cardi appointment goes really well. I'll be thinking of both of you - please update when you can.

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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#74 of 135 Old 05-28-2008, 02:39 PM
 
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Rozzie'sma - I'm so sorry for all you and Zann went through. I can't imagine. I hope the next appt. goes well and that any long-term effects of his surgeries are things that will go away at some point. I also can't believe they kept him in the same unit as adults! That makes no sense. I am lucky that we live close to a really well-equipped university hospital.
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#75 of 135 Old 05-28-2008, 03:29 PM
 
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Rozzie'sma ... I am so sorry for what you and little zaan have been through. It sounds like a NIGHTMARE.
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#76 of 135 Old 05-28-2008, 03:37 PM
 
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Thanks for the hugs, it's been a little over a year now but it's still fresh in my mind. One of the worst parts of all of it is that he had such a wonderful birth, and people look at it like it caused his problems. They just don't believe me when I tell them there is only about a 20% chance they would have recognized his problems with an US anyway.
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#77 of 135 Old 05-28-2008, 04:28 PM
 
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Thanks for the hugs, it's been a little over a year now but it's still fresh in my mind. One of the worst parts of all of it is that he had such a wonderful birth, and people look at it like it caused his problems. They just don't believe me when I tell them there is only about a 20% chance they would have recognized his problems with an US anyway.
YES! Same here. Ev was also born at home with a MW and I get some seriously nasty looks when people hear that. The truth is that a majority of congenital heart defects are not discovered until after the baby has left the hospital in a hospital birth. It is not like they do ANYTHING to screen for CHDs. I wish more people knew this. I had one lady aske me yesterday if I thought they could have found Ev's defect if I had just given birth at a hospital.

With Evan I had a level 2 ultrasound and they still missed his heart defect. Heart defects are very rarely caught on u/s.

Evan's CVICU was for children newborn up to 18 years old too. Only because it was a children's hospital, otherwise it would have been all ages. So that doesn't surprise me that your LO was with all ages. They would have admitted him into the NICU except he was born at home and the NICU is a "sterile environment" and he had been out of the hospital. They first admitted him into the PICU, then diagnosed him with the heart defect then he became a "Cardiac patient" and was moved to their CVICU.

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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#78 of 135 Old 05-28-2008, 05:29 PM
 
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So many similar stories.... For those who had homebirths and two weeks at home before issues became apparent, it was a hard adjustment wasn't it? It was so hard for me, I felt like I birthed at home to prevent issues, and then here we were in the hospital. More then likely Gabrielle would of been exposed no matter what, but I also feel like I was in denial that Dh was sick. I was just too into my baby moon and nothing was going to interfere with that. I knew he had a cough, but it just didn't sink in how bad it was until it was too late. Because of DD2's illness and because I live in a very rural area, she was on the general pedi floor, which is also med/surg for adults. There is no PICU here, no real NICU either, all those babies get flighted 6 hours away. I was very, very lucky that our pedi kept Gabrielle here instead of transferring her to Children's. That would of been a nightmare beyond belief.

I talked to docs later and they were shocked that Gabrielle was kept here, they would of flighted her. The thing is, there is nothing that Children's could of done for her, we would of just been there for weeks just in case she didn't start breathing again after a coughing spell. And when I say spell, I mean coughing for minutes, having periods where she couldn't breathe for so long that she would turn blue, throw up, and pass out, only to wake up and do it over and over again everyday for months. Once we got her O2 figured out, and her "well" enough that I felt that I could manage her at home mostly, we went home, only returning to rehydration her with fluid when she would get too dehydrated from vomiting all the time.

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#79 of 135 Old 05-29-2008, 07:44 AM
 
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I am so glad that there was nothing seriously wrong with my child. The other mammas stories are so scary sometimes.

I am glad you heart mamas got the care your LOs needed, even if you had to go from the arms of the mother right into hell. At least you got that first bit of calm to your LOs life, maybe that's why they treated you like you were the mamma, because you actually had your child before bringing it to them.

Mother to a wonderful 4 year old boy born March 2007 who was once fuzmalesling.gifbfolderchild.gifdiaper.gif and still familybed1.gif

Starting once more from the beginning and  expecting bigeyes.gif a surprise someone pos.gif in September

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#80 of 135 Old 05-29-2008, 03:50 PM
 
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Were any of the other hb mamas "punished' for their hb. It was not as bad as it could have been but later the doc mentioned they would have discharged him a few days sooner but because of the hb he was afraid I would not bring him back. He said this a few months and many appointments, emails, and phone calls later. It really upset me. I was treated like an oddity by the nurses though, most of them had elective c-secs because they were afraid of birth, it was sad.

I did feel postive about having my son at home because I was able to bond with him more. The NICU nurses often tried to tell me I could not do things but because I was not recovering from a traumatic birth I was better able to advocate for my son.
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#81 of 135 Old 05-29-2008, 05:33 PM
 
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Were any of the other hb mamas "punished' for their hb.
Well the ER staff really treated me like I was insane for having a HB, but the CVICU staff was nice. I'm sure they thought I was weird but they never let on. The one nurse we kept requesting (and getting) was more natural and said she'd opt for a drug free birth when she had children too. There were lots of visitors from other departments and even other hospitals coming in to see "the baby with the rare defect that was born at home and doing so well" He was a little celebrity in that hospital because of his emergency entrance and near-death experience. It was sweet seeing everyone come back to check in on him.

I forgot to mention, when we were in the ER I got into a heated discussion with the Pedi nurse that was called down about circumcision. She was trying to catheterize him and I told her not to retract him. She kept yanking at his foreskin and said "Well have you decided what you are going to do about this yet" (pointing to his foreskin) and I said "I'm not going to do anything about it" She mumbled something about it needed to be retracted to be cleaned or it would get infected, increased risk for UTIs blah, blah, blah. This was a PEDI NURSE! I let her have it, and my MW saw how mad I was so she stepped in and educated her. All while my son was dying. Nice timing huh? I included this in our letter to the hospital.

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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#82 of 135 Old 05-29-2008, 06:39 PM
 
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Ohhhh don't get my started on the circ stuff. We had long made the decision to leave Zann intact so it was no big deal for me, but the other heart parents had a FIT when they learned they would not be "permited" to circ their sons. The up side of this was that the staff was foreskin friendly in procedures, but most of the nurses still thought it was awful and one pregnant NICU nurse was talking about how when her son was born "He wasn't going to look like an elephant etc." I am surprised I didn't get kicked out of the NICU for letting her have it with both barrels. She said "well I am getting it done under general anaestesia......" Needless to say I told her that if she was a nurse, educated about the foreskin and the risks of putting a newborn under and was still dumb enough to want it, than she was not qualified to EVER care for my son. I called down the director of nursing for the unit and got it in writing that she was never to be Zanns nurse.

However out of that I did get the best NICU nurse for his last few days. She even emptied a room where I could try to bf him, he was not on any monitors except the pulse-ox and she let me disconnect it and go in there with him. We also got to room in a few hours the day before he came home and I did all his care, including dressing him in whatever I wanted. She was an angel.
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#83 of 135 Old 05-29-2008, 06:46 PM
 
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I never knew that heart babies could not be circ'd...that is GREAT! I can't believe they would be mad about that. They would honestly want to put their children through yet another procedure aftear dealing with heart surgery? Wow, that is messed up. And the risk for infection and potential for endocarditis didn't scare them? Endocarditis can be deadly!

Good for you for having words with that nurse. That is rude of her to make comments like that.

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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#84 of 135 Old 05-29-2008, 07:20 PM
 
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At UAB where Zann had his surgeries that is the policy. The risk of infection and heart attack or stroke is just too great. I have heard of other places doing it under a general though. It turns my stomach to think of it. These kids already have so much pain
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#85 of 135 Old 05-29-2008, 08:57 PM
 
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The entire concept of circ'ing turns my stomach. I will never be able to understand on any level how anyone can cut off a part of their child's genitalia. It's completely beyond me.
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#86 of 135 Old 05-29-2008, 11:13 PM - Thread Starter
 
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Quote:
Originally Posted by rozzie'sma View Post
I did feel postive about having my son at home because I was able to bond with him more. The NICU nurses often tried to tell me I could not do things but because I was not recovering from a traumatic birth I was better able to advocate for my son.
I had a very time with Bean's NICU stay because I was sick myself; I was still on magnesium sulfate the first time I saw him, and despite having had a vaginal birth was unable to even sit straight up, let alone walk. It was insane.

I'll respectfully ask that discussion of circumcision be removed from the thread; I don't want it to get pulled and/or moved, and there's a whole forum for that.

Rynna, Mama to Bean (8), Boobah (6), Bella (4) and Bear (2)
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#87 of 135 Old 05-29-2008, 11:20 PM
 
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Were any of the other hb mamas "punished' for their hb.
Not at all. I think it's because I had a GREAT pedi on my side. Oddly enough, we never had a doc with DD1, never needed one. DH had requested that I find one and do an exam with DD2, and for some reason I went along with with, Usually that is something that I find not worth my time at all, especially since at that time we were living 35+ miles one way from town, going to the doc was a huge ordeal. My MW was very outspoken and had not exactly made many friends in the area with docs and hospital personal, the only doc she really liked was this pedi, so I made an appointment with her, had never met her before. Did the initial appointment thinking how nice she was, she thought is was awesome we had a HB, but that I'd probably never see her again. Little did I know that in one week I would be in and out of that office constantly. She really stuck up for us, pushing certain issues in the hospital, and with other docs.

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#88 of 135 Old 05-31-2008, 05:20 PM
 
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The short version of our story is that 5 years ago I went into the hospital to be induced using cyotec (HUGE problem). I was in terrible labor for 30 hours with contractions every 90 seconds. I got an epidural and my blood pressure dropped and the baby's heartbeat slowed way down (so slow that I asked what was wrong with her). The doctors buffed me up and continued with labor. After a few more hour and 2 hours of no progress while pushing, they tried forceps. The doc pulled hard enough to pull me down the table...twice! The forceps failed and we had an emergency c-section under general.

Miss Kat had SEVERE meconium asperation which progressed to Persistant Pulmonary Hypertension of the Newborn. We tried a vent and she crashed. She was then put on ECMO, which is a heart and lung bypass machine. She was on ECMO for 6 days, and a vent for 2 weeks. She ended up staying in the NICU for 6 weeks because she got septic (ended up having urinary reflux) and couldn't learn to eat. She stayed on O2 at home for almost 6 months while her lungs healed,

She is now almost 5. I had PTSD for at least a year. My best friend gave birth in the same room I was in and when I went to visit her the smell of the hospital made me throw up. When I would hear "NICU" sounds, I would have a panic attack. With time things got better.

There is a ton more to our story that includes medical malpractice and just all around terrible treatment, but this is so long alread!

Miss Kat was 10 pounds when she left the hospital. She never learned to nurse so I pumped exclusivly for 13 months. She is now Deaf, and it is from birth injury.

Just thought I wouls share. Every year around her birthday (June 3) I start looking at NICU and ECMO stuff again....
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#89 of 135 Old 06-01-2008, 12:47 AM
 
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Fairejour: I am sorry for what you and miss Kat went through. That must have been really scary. Happy early birthday to Miss Kat. How is she doing now?

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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#90 of 135 Old 06-01-2008, 02:11 AM
 
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She is great. Other than the deafness she is a normal, smart, rambunctious, crazy fun girl.

http://i268.photobucket.com/albums/j...esscloseup.jpg
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