Full/Near-term NICU support thread-- May/June 08 - Page 3

[Jilian]

Originally Posted by lilsparrow

Why do Drs. place so little importance on the mother's instinct? It is a gift, and should be utilized and a crucial part of medical care IMO. And this seems to be a common attitude among doctors. Jillians case is another ex.
I, for one, am TIRED of being blown off by arrogant doctors. (fume)

I wonder this too. There are very few doctors who will actually listen to a parent's instinct and I think they should rely heavily on instincts because they are rarely wrong. Luckily our cardiology team relies very heavily on mother's instincts. They even school patients on instincts and tell us to come in if something doesn't feel right - even if we are not sure. They promise not to belittle us or make us feel silly and say it is better to be safe and reassured. I love it. I wish more doctors were like this!

Even when Evan was born DH and I both felt extremely protective of him and worried that something was wrong with him - even though there were no signs yet. It is weird but we just *knew*. I thought I was just being paranoid because of his small size.

[gaidinsgirl]

I have thought of replying to this thread before but never can put how I feel/felt into words. My son was in the NICU for only 6 days but it was very tramatic for me. I thought he was perfectly healthy, he was born at 38 weeks 4 days. Weighed 8 lbs 13 ounces. The on call pediatrician told us that he had to be moved to a NICU in a hospital that was about 1.5 hours away. We were unable to hold him until he was 5 hours old and this was after basically begging them to let us hold him. There was nothing life threatening about his condition, the doctors just didn't know what was wrong so to the NICU he went. He had a large birthmark on his right arm/shoulder. It was twice the size it should be. The oncall doctor transfered him because he didn't know what to call what he had. I had had a c-section but was able to be released to go be with my son the next afternoon. He was in the NICU for only 6 days but it was horrible for me. I craved being with him. We had tried for 10 years before finally getting pregnant so having him taken to the NICU at all was devastating to me. I still wish that I had stood up for things and had things happen differently. I put too much trust in doctors.

I had to basically threaten the NICU nurses to make them NOT give my son formula. They were telling me that my milk was making him sick. They only feed babies every 3 hours and to me that is just insane. A formula fed baby might only need milk every 3 hours, but a bf baby needs it so much more often and when my son didn't gain back to his birth weight they threatened to "put a tube down his throat". I had to give him the bottle of ebm first and then they allowed me to try to nurse him but I had to be finished with both within 15 minutes so that they could put him back in his basinette. I wasn't ever allowed to hold or touch him if he was asleep because "we don't want crying babies on our shift". He wouldn't have cried because I would have been holding him. It's been over a year and I still cry thinking about it.

[lilsparrow]

Originally Posted by cj'smommy

Hi everyone, I'd like to subscribe if that's ok!

I'm due anyday now, but if my babe isn't here by the 28th (I'll be full term on the 30th) I'm having another c-section. I'm hoping and praying for a VBAC.

I know my babe will be in the NICU but not sure for how long. He's been diagnosed with a slow growing, benign brain tumor so he'll be there initially for observation and testing. If things look 'bad' which is a very slight possiblity, he'll be transported to another hospital for brain surgery right away. Ideally they'd like to wait a couple of months for him to get bigger. The bigger he is, the more blood volume he'll have and the more chance he has to survive the surgery.

Thanks for starting this thread, I've lurked here a lot trying to gather some information but as my little one will be full term, I haven't found too much.

HI Cj's mommy! I missed your post. I am sorry to hear about your baby's brain tumor. It is so sad, when what is supposed to be such a happy occasion is mixed with such sadness and worry. I hope your little one has plenty of time to grow and get strong, and that you have a substantial tim eot spend with him before his surgery.: And I pray for you, strength and courage as you come closer to your time. I know that already you are preparing a way for him and that much of his strength will come from the love and prayers of his family.

[lilsparrow]

Originally Posted by gwerydd

Liesbet was born at 35 weeks, weighing 4lbs 15 oz. she spent four days in the Level III NICU and 12 days in the Level II. it was stressful as i had a cesarean and we had no car so i had to beg and borrow rides from friends to visit her.

How horrible!! That must have been so hard. Like you didn't have enough to worry about. s

(and dh made me take the subway one week after my cesarean : )

I am sorry, but that was just mean. Talk about abandoning you in your time of need.

[lilsparrow]

Originally Posted by gaidinsgirl

I have thought of replying to this thread before but never can put how I feel/felt into words. My son was in the NICU for only 6 days but it was very tramatic for me. I thought he was perfectly healthy, he was born at 38 weeks 4 days. Weighed 8 lbs 13 ounces. The on call pediatrician told us that he had to be moved to a NICU in a hospital that was about 1.5 hours away. We were unable to hold him until he was 5 hours old and this was after basically begging them to let us hold him. There was nothing life threatening about his condition, the doctors just didn't know what was wrong so to the NICU he went. He had a large birthmark on his right arm/shoulder. It was twice the size it should be. The oncall doctor transfered him because he didn't know what to call what he had. I had had a c-section but was able to be released to go be with my son the next afternoon. He was in the NICU for only 6 days but it was horrible for me. I craved being with him. We had tried for 10 years before finally getting pregnant so having him taken to the NICU at all was devastating to me. I still wish that I had stood up for things and had things happen differently. I put too much trust in doctors.

I had to basically threaten the NICU nurses to make them NOT give my son formula. They were telling me that my milk was making him sick. They only feed babies every 3 hours and to me that is just insane. A formula fed baby might only need milk every 3 hours, but a bf baby needs it so much more often and when my son didn't gain back to his birth weight they threatened to "put a tube down his throat". I had to give him the bottle of ebm first and then they allowed me to try to nurse him but I had to be finished with both within 15 minutes so that they could put him back in his basinette. I wasn't ever allowed to hold or touch him if he was asleep because "we don't want crying babies on our shift". He wouldn't have cried because I would have been holding him. It's been over a year and I still cry thinking about it.

Omgosh!! I HATE HATE HATE hearing stories like this. I am so sorry for you, momma. I know exactly how you feel, about the attitude of your nurses anyway. Not the NICU, thank God. It has been two years for me, and I am very wary of hospitals and doctors. But it is getting better as time passes. I hope it does for you too.

[lilsparrow]

Originally Posted by Jilian

I wonder this too. There are very few doctors who will actually listen to a parent's instinct and I think they should rely heavily on instincts because they are rarely wrong. Luckily our cardiology team relies very heavily on mother's instincts. They even school patients on instincts and tell us to come in if something doesn't feel right - even if we are not sure. They promise not to belittle us or make us feel silly and say it is better to be safe and reassured. I love it. I wish more doctors were like this!

Even when Evan was born DH and I both felt extremely protective of him and worried that something was wrong with him - even though there were no signs yet. It is weird but we just *knew*. I thought I was just being paranoid because of his small size.

I saw that in your montage, that your ped blew you off, and the ER tried to too.

You are lucky to have doctors that recognize the incredible help to be gained from our instincts. I wish it would be more standard practice.

[lilsparrow]

Originally Posted by veganone

Hi Wendy - VSD is a hole between the ventricles of her heart. Most of the time they close on their own at some point, or shrink enough that surgery isn't needed, but if they don't then they surgically close them. She's doing really well - I think if it closes on its own they won't need to monitor her forever, but if it doesn't they will.

Thank you. Praying for the best possible outcome for your little Isabella.

[Jilian]

Originally Posted by gaidinsgirl

I have thought of replying to this thread before but never can put how I feel/felt into words.

It's been over a year and I still cry thinking about it.

I'm so sorry mama. Thank you for posting and sharing your story.

[AllieFaye]

I'd like to offer support to all the other full-term NICU moms. I've been there and know how horrible it can be. When my son was in the NICU, one nurse told us that it was the 40 weekers they see that have the worst outcomes. If they are admitted, it's because of serious problems that have nothing to do with gestational age. So, often it's the parents of full term moms who need the most support, either because they are going on to a regional children's hospital for surgery, or never taking a living child home. They don't necessarily get better with age. These kids won't be alright if they just get bigger. Add to that some unsupportive or uninformed things that people assume about the NICU - well, it's a special kind of hell.

It does get better in its own way. And, there is support out there.

[veganone]

Originally Posted by gaidinsgirl

I have thought of replying to this thread before but never can put how I feel/felt into words. My son was in the NICU for only 6 days but it was very tramatic for me. I thought he was perfectly healthy, he was born at 38 weeks 4 days. Weighed 8 lbs 13 ounces. The on call pediatrician told us that he had to be moved to a NICU in a hospital that was about 1.5 hours away. We were unable to hold him until he was 5 hours old and this was after basically begging them to let us hold him. There was nothing life threatening about his condition, the doctors just didn't know what was wrong so to the NICU he went. He had a large birthmark on his right arm/shoulder. It was twice the size it should be. The oncall doctor transfered him because he didn't know what to call what he had. I had had a c-section but was able to be released to go be with my son the next afternoon. He was in the NICU for only 6 days but it was horrible for me. I craved being with him. We had tried for 10 years before finally getting pregnant so having him taken to the NICU at all was devastating to me. I still wish that I had stood up for things and had things happen differently. I put too much trust in doctors.

I had to basically threaten the NICU nurses to make them NOT give my son formula. They were telling me that my milk was making him sick. They only feed babies every 3 hours and to me that is just insane. A formula fed baby might only need milk every 3 hours, but a bf baby needs it so much more often and when my son didn't gain back to his birth weight they threatened to "put a tube down his throat". I had to give him the bottle of ebm first and then they allowed me to try to nurse him but I had to be finished with both within 15 minutes so that they could put him back in his basinette. I wasn't ever allowed to hold or touch him if he was asleep because "we don't want crying babies on our shift". He wouldn't have cried because I would have been holding him. It's been over a year and I still cry thinking about it.

I'm so sorry - Isabella was only away from me for 2 nights and that was traumatic - people don't realize how awful it is to be separated from your newborn. I can't believe the breastfeeding stuff. We had pretty bad bfing support and were triple feeding for a long time I think partly because we had such crap support for the time we were in the hospital.

[Jilian]

Originally Posted by veganone

people don't realize how awful it is to be separated from your newborn.

Exactly. It is such a horrible feeling. It feels so unnatural to be able to see your baby struggling and not even be able to pick him up. It hurts a lot, more than words could ever describe. I still have to shut those memories out because they are too painful to deal with just yet. It was 7 days until we could hold Evan again after his surgery. Just thinking about it makes me feel like I am going to vomit.

[gaidinsgirl]

Originally Posted by veganone

people don't realize how awful it is to be separated from your newborn.

exactly. I will never forget how I felt. Everyone tells me that it gets easier and it does get easier but it still hurts. When the pediatrician said that he had to be transported i felt like my heart was being ripped out. My poor dh held it together because I couldn't even speak I just cried. I would never want anyone to experience this. Another really hard part for me was that Jamie was in the NICU for 12 shift changes and he never had the same nurse twice. They all had different rules and different ways they wanted things done and that really made it hard for me.

[cj'smommy]

Originally Posted by lilsparrow

HI Cj's mommy! I missed your post. I am sorry to hear about your baby's brain tumor. It is so sad, when what is supposed to be such a happy occasion is mixed with such sadness and worry. I hope your little one has plenty of time to grow and get strong, and that you have a substantial tim eot spend with him before his surgery.: And I pray for you, strength and courage as you come closer to your time. I know that already you are preparing a way for him and that much of his strength will come from the love and prayers of his family.

Thank you so much, you don't know how much your words mean to me.
I'm trying really, really hard not to get too anxious about it, but it's hard.

I keep hearing "Well at least you know he'll be in the NICU, so it's not a surprise." I can understand that, and I can't imagine how hard it must be not to expect it and have your baby whisked away without warning. On the other hand, knowing that as soon as he's born he'll be taken away and possibly transfered hasn't been easy either. I've known since January that it's going to happen and that one thing that is weighing heavy on my heart.


to everyone. I need to go back and read everyone's stories....

[Jilian]

Originally Posted by cj'smommy

I keep hearing "Well at least you know he'll be in the NICU, so it's not a surprise." I can understand that, and I can't imagine how hard it must be not to expect it and have your baby whisked away without warning. On the other hand, knowing that as soon as he's born he'll be taken away and possibly transfered hasn't been easy either. I've known since January that it's going to happen and that one thing that is weighing heavy on my heart.

I'm so sorry mama. Worrying must be really hard. Sometimes I think that knowing can be a curse. I am kind of happy that Evan's heart defect took us all by surprise, as awful as that may sound. Try as hard as you can to live in the moment and just enjoy each and every day and be fully present. It is so hard not knowing what the future holds, but none of us *really* know what the future holds. And sometimes what we imagine in our heads is a million times worse than what actually happens. Have you ever tried meditation? It has been a lifesaver for me. The book "The Power of Now" by Ekart Tolle (sp?) has helped me a lot.

Wishing you peace

[lilsparrow]

Originally Posted by cj'smommy

Thank you so much, you don't know how much your words mean to me.
I'm trying really, really hard not to get too anxious about it, but it's hard.

I keep hearing "Well at least you know he'll be in the NICU, so it's not a surprise." I can understand that, and I can't imagine how hard it must be not to expect it and have your baby whisked away without warning. On the other hand, knowing that as soon as he's born he'll be taken away and possibly transfered hasn't been easy either. I've known since January that it's going to happen and that one thing that is weighing heavy on my heart.


to everyone. I need to go back and read everyone's stories....

I have found when in the midst of a tragedy, to be wary of any phrase that begins with "At least...." It is usually followed by an insensitive statement that is supposed to instantly make you feel better and jump for joy. Then followed by a remark that lets you know they are offended by your inability to suddenly realize you have been looking at the situation ALL wrong.:

My favorite (and I heard this ALL the time) was when my son was diagnosed with Type 1. "Well, AT LEAST it's not cancer."

Cj'smommy ... hang in there. It's true that it's not a surprise, but that doesn't mean it will be less painful for you. Only that you were forewarned. I am trying to think of a situation when the pain was lessoned by knowing beforehand.

Let's see, "I'm going to punch you in the face." Nope, still hurts.

"On the 3rd day of September, you will have a splitting migraine, that will make you throw up and see stars." Still, hurts although I was able to have my trash can ready.

Sooooo stupid!! It would only lessen the pain if you could do something to avoid it! Like move out of the way, or change the outcome. The pain is not alleviated simply by *knowing.*

I think sensitivity 101 should be a mandatory class.

[OGirlieMama]

I just want to give to all of you mamas in here. Because my only experience is with very early preemies, it's easy to forget that a lot of later preemies and even FT babies end up in the NICU, too. I remember looking at the big 8 pounder next to my tiny babies one day and being hit with that realization - nothing is ever guaranteed.

Any time spent forcefully separated from your baby is an eternity and I am sorry so many of you went through this awful experience, and even more sorry that others have said things to try to minimize it.

[veganone]

Originally Posted by Jilian

Exactly. It is such a horrible feeling. It feels so unnatural to be able to see your baby struggling and not even be able to pick him up. It hurts a lot, more than words could ever describe. I still have to shut those memories out because they are too painful to deal with just yet. It was 7 days until we could hold Evan again after his surgery. Just thinking about it makes me feel like I am going to vomit.

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.

Originally Posted by gaidinsgirl

exactly. I will never forget how I felt. Everyone tells me that it gets easier and it does get easier but it still hurts. When the pediatrician said that he had to be transported i felt like my heart was being ripped out. My poor dh held it together because I couldn't even speak I just cried. I would never want anyone to experience this. Another really hard part for me was that Jamie was in the NICU for 12 shift changes and he never had the same nurse twice. They all had different rules and different ways they wanted things done and that really made it hard for me.

I'm so sorry for you too. It does still hurt, even for me...

Originally Posted by cj'smommy

Thank you so much, you don't know how much your words mean to me.
I'm trying really, really hard not to get too anxious about it, but it's hard.

I keep hearing "Well at least you know he'll be in the NICU, so it's not a surprise." .

I'm sorry momma - I can't even imagine knowing that your baby has something so scary. My prayers are with you and your LO. And knowing is NOT easier. No way - either way something that serious is awful. And when they tell you you can at least sleep while LO is in the NICU, smack them for me. Seriously, have a response prepared because I bet you'll hear it from some **&^().

Originally Posted by lilsparrow

I have found when in the midst of a tragedy, to be wary of any phrase that begins with "At least...." It is usually followed by an insensitive statement that is supposed to instantly make you feel better and jump for joy. Then followed by a remark that lets you know they are offended by your inability to suddenly realize you have been looking at the situation ALL wrong.:

My favorite (and I heard this ALL the time) was when my son was diagnosed with Type 1. "Well, AT LEAST it's not cancer."

Oh good grief. Yes, I'm so happy my child has a serious illness, thank you for your understanding. Holy cow...

Originally Posted by OGirlieMama

Any time spent forcefully separated from your baby is an eternity and I am sorry so many of you went through this awful experience, and even more sorry that others have said things to try to minimize it.

Thank you, momma. I'm sorry you had to deal with it so much longer than we did...

[Jilian]

Originally Posted by veganone

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'm sorry you had to be separated from her. That must have been really hard. I feel lucky because we didn't have a separation (except for the actual diagnosis when they kicked us out and surgery), I could see him at any time, just could not pick him up.

Did anyone feel like they suffered from PTSD after everything was done? I remember being on auto-pilot while everything was going on and then when we got home I started feeling a lot more scared. Things started sinking in and I started realized what happened and how close to death he was. I'm feeling better about it all now, but it has been almost a year. The one year anniversary coming up does make me a little weepy but I feel a million times better than I did last year!

[SweetTexasgal]

Hello Mamas

I so wish this thread had been around much sooner. My LO was born @ 39 weeks and spent a week in the NICU because of a meconium birth. I had no idea (obviously) until my water broke. I was calm and collected and understood they would whisk her away as soon as she was born, but I had no idea that I would not see her again for nearly 12 hours. It was awful!!! At first she was having a procedure....WHAT procedure???? I am her Mama...I should be there....then the nurse said I needed to rest before I visited the NICU. Do you really rest when all you can think about is your poor babe that is sitting in the NICU all alone?

I am so greatful for the wonderful care that she received in the NICU and that we basically had a very uneventful stay in the NICU, but I still feel the trauma of her birth, the not seeing her for hours, the going home without her and the insensitivity of many of the doctors and nurses. I keep thinking it will go away...but it hasn't.

[Jilian]

Originally Posted by SweetTexasgal

At first she was having a procedure....WHAT procedure???? I am her Mama...I should be there....then the nurse said I needed to rest before I visited the NICU. Do you really rest when all you can think about is your poor babe that is sitting in the NICU all alone?

They made us leave too. First they kicked us out of the room in the ER when he was being intubated, then when he was transported to the Children's hospital they had us wait in the waiting room for hours while they tried to find out what was wrong. I remember arriving @ the hospital and running after the transport team to follow Evan's isolette while DH parked the car. When we got into the PICU there was a team of 20+ people just waiting for him and that was the moment I realized something really scary was going on - we had no idea because a few hours prior the ER doctor was trying to discharge us because he was "fine"

Part of me feels relieved that I did not have to be there to see the awful procedures he went through and the other part feels horrible that he went through them alone. I wouldn't even have known all of the procedure that were done had I not looked at the medical records.

I had a lot of feelings of him not belonging to me too when he was in the hospital. I felt really out of my league. I'm the type that researched EVERYTHING related to parenting choices and thinks things out carefully. But I had no time to research, and really no choices even if I did research. It was hard for me to put 100% of my trust into strangers to care for him. Luckily they did a good job. But still...whoa!

Sorry for all of the ramblings. The one year anniversary of his surgery is in a few weeks and I'm still processing everything that happened and letting it go.