Preemie moms..... - Page 3

[Kodama]

wow.

[Sheal]

Originally Posted by Le Bec

No, I do see your point I just don't agree. I'm sorry you don't see that my NICU experience wasn't just based on being in a hospital. It was based on length of stay, prognosis, treatments, proceedures and surgery.

Things can be equally valid without being equal in difficulty.

So are you saying that because my 29 weeker only spent 6 weeks in hospital and came off of vent 9 hours after being born, had prem apnea and bradycardia that your NICU stay and experience was more difficult than mine? Or that my 33 weeker with bradies and apnea and a PDA and GERD are less difficult than your experiences?

It's not about the procedure, take procedure, stay length and gestation out of it and you still come up with the same fundimental raw emotions. The why me, the doubt and sense of failure, the stress and emotional turmoil. The not knowing, the sense of powerlessness when something goes wrong or takes a step back after taking two forward.

^^ Did you not go through those things too? Perhaps at a different intensity of emotions and thoughts than I did, or perhaps not but still went through it didn't you? As I did.

That's my point. peroid.

[susienjay]

Originally Posted by Le Bec

Maybe I'm missing your point. How can my experience of being told that my baby will most likely die during delivery and then, that she will probably die in her first few days or if she doesn't suffer major complications be the same as someone who's baby was taken directly to special care to be monitored while they to grow be the same thing?

No they aren't the same but that shouldn't diminish the feelings of someone that has a feeder/grower. Many moms that deliver at 32-34 weeks have had weeks or months of complications with their pregnancies. Not to mention an extremely traumatic birth experience. I don't think I've read a preemie birth story that wasn't awful. So while it may seem like we got off easy compared to what a micro goes through it doesn't necessarily make it easy to deal with.

My twins were 32 weekers and by preemie standards did really well. In our room the last 2 weeks we had a 25 weeker that was over 2 months old and he had finally gotten to 2 pounds. They tried a couple times while we were there to wean him off the vent but as of the day we went home he was still on it. It did give me a good perspective that I should be grateful my babies were doing so well but their NICU stay is still probably the most traumatic experience I've gone through. I had a 29 weeker after that and I don't know if it was knowing a little more what to expect but I handled her NICU stay a lot better than the twins even though she was 3 weeks earlier.

[Kodama]

I am sick and disgusted that we are having a "my baby was sicker than your baby" snarkfest here. Grow up.

There are full term babies who have died. Still birth. That is 100 times worse than what anyone here with living babies have gone through no matter how long your NICU stay was. Why? Because atleast they are ALIVE and HERE with you. So what if your baby was on the vent longer than others? So what if you have a 24 weeker and think anyone with a 33 weeker should STFU? That is your issue and you have a lot to work through.

Your priorities and thinking are screwed if you are thinking this way.

Everyone here with a preemie or child who was in the NICU for any length of time is lucky to have their children and have them be alive. 30 years ago, all of us would be grieving over our children who died at birth because the technology was simply not there to help them survive.

No matter what thou, we are lucky our children are alive. I can't stress enough that 30 years ago, we would all be grieving parents and be visiting our children at the cemetery because a lot of preemies did not survive.

Instead of bickering with each other about who has the right to complain, why not count your blessings. Be thankful you have your child. Who cares if the 2 day NICU stay was rough on someone and they want to vent. Be kind to one another. Sheesh.

[sarah1972]

Well, this got really crazy here, but going back to the original post, I do remember a book I read about ranges of prematurity. It was by Dr. Sears (and again, not recommended for micro moms - thanks Amys1st) but 36+ was considered FT, 30 to 35-6/7 weeks was considered premature, 27 through 29-6/7 weeks was considered extreme prematurity, and anything below 27 weeks was considered a micro. Maybe we should just stop using prematurity as a blanket term.

[Le Bec]

Your experience and my experience are not the same, I guess you can take that anyway you want. That of course, as I've said before, doesn't make your experience any more or less valid than mine.

Originally Posted by Sheal

It's not about the procedure, take procedure, stay length and gestation out of it and you still come up with the same fundimental raw emotions. The why me, the doubt and sense of failure, the stress and emotional turmoil. The not knowing, the sense of powerlessness when something goes wrong or takes a step back after taking two forward.

^^ Did you not go through those things too? Perhaps at a different intensity of emotions and thoughts than I did, or perhaps not but still went through it didn't you? As I did.

That's my point. peroid.

But see, my point is that you *can't* take those things out of my experience. They are part of what I went through, they will always be part of what I went through. This isn't a mathematical equation where you can just take away certain things and pretend they didn't happen. The level of emotion that I felt is not the same as what you would have experienced. Just as how another womans experience is worse than mine because she lost her child. To say that her and my experiences are the same because our babies were both in hospital is belittling and demeaning in the same way your saying that a baby who went to the hospital nursery because it needed monitoring for a day or so is the same as my five month stay is. By no stretch of the imagination are those things the same.

What you seem to be missing is that, just because I've said one experience is worse does not detract from how bad yours was. Your experience will always be as bad as it was but that doesn't make it equally as bad as another persons.

Originally Posted by susienjay

No they aren't the same but that shouldn't diminish the feelings of someone that has a feeder/grower. Many moms that deliver at 32-34 weeks have had weeks or months of complications with their pregnancies. Not to mention an extremely traumatic birth experience. I don't think I've read a preemie birth story that wasn't awful. So while it may seem like we got off easy compared to what a micro goes through it doesn't necessarily make it easy to deal with.

You're absolutely right Susien and if you read over my posts you'll see that I've said time and time again that it is absolutely horrible and the worst experience of a new mums life to have their baby - no matter what gestation - taken away at or shortly after birth.

[Sheal]

Originally Posted by sarah1972

Well, this got really crazy here, but going back to the original post, I do remember a book I read about ranges of prematurity. It was by Dr. Sears (and again, not recommended for micro moms - thanks Amys1st) but 36+ was considered FT, 30 to 35-6/7 weeks was considered premature, 27 through 29-6/7 weeks was considered extreme prematurity, and anything below 27 weeks was considered a micro. Maybe we should just stop using prematurity as a blanket term.

I think that's part of the problem too. The word premature can be perceived by people in many different ways. What some consider micro prems others may consider just extreme prematurity. What about 28 weeker twins. My SIL's twins were 28 weeks but according the docs at the time, because there are two of them they step back two weeks as well to account for two babies making the twins 26 weekers. Under the reference you quoted the twins were physically extreme premature but under the perceptions of the doctor and the standards at the time (and their size really, both were under 2 lbs at birth) they were considered micro prems.

My only point was that regardless of WHY the baby is there every NICU mama (and papa) goes through the same set of initial emotions and subsequent emotions at one point and time. The sets of emotions and feelings for NICU parents whether it's a 2 hr stay in NICU, a 2 week stay or 2 month stay intersects each other on an emotional scale. The experiences may not be the same in length, health and size or prematurity (or lack of) but the emotions are fundamentally on the same level as each other.

My last post wasn't a pissing match at who's baby was more sick or who stayed longer and had more problems. It was to convey that despite our different experiences and what happened with our babies we went through the same range of emotions albeit perhaps at different levels of emotion at different times within our experiences.

[Sheal]

Originally Posted by Le Bec

Your experience and my experience are not the same, I guess you can take that anyway you want. That of course, as I've said before, doesn't make your experience any more or less valid than mine.



But see, my point is that you *can't* take those things out of my experience. They are part of what I went through, they will always be part of what I went through. This isn't a mathematical equation where you can just take away certain things and pretend they didn't happen. The level of emotion that I felt is not the same as what you would have experienced. Just as how another womans experience is worse than mine because she lost her child. To say that her and my experiences are the same because our babies were both in hospital is belittling and demeaning in the same way your saying that a baby who went to the hospital nursery because it needed monitoring for a day or so is the same as my five month stay is. By no stretch of the imagination are those things the same.

What you seem to be missing is that, just because I've said my experience is worse does not detract from how bad yours was. Your experience will always be as bad as it was but that doesn't make it equally as bad as another persons.



You're absolutely right Susien and if you read over my posts you'll see that I've said time and time again that it is absolutely horrible and the worst experience of a new mums life to have their baby - no matter what gestation - taken away at or shortly after birth.

I've noticed something, your daughter was born in the same month and year as my 33 weeker. I imagine that your experiences are still raw and very new in your heart. I am not trying to devalue your experiences or associate it with mathematical computations. What I am saying is despite what we have experienced we went through many of the same emotions.

Let me tell you more about my 29 weeker. (I am assuming your lo is your first NICU baby?). My 29 weeker was my first baby. While I was on a cold operating room (because they had no birthing rooms left that night) table they had no time to move my son to another room to recucitate him. I had to watch him being worked on, brand new mama with no experience, no idea nothing. Why because some dumb arse nurse did not believe me that he was coming and they had no choice but to call NICU (and subsequently code pink) at the last second with no prep time. It's not fun watching CPR\recucitation on a baby that small, let alone one's own baby. I KNOW, absolutely know where you are coming from. I remember the nurse turning his head toward me while he was on the warmer with a tube down his throat, his eyes wide open, staring at us. I cherish that memory, you want to know why, because that was the first time our eyes met and despite all the hardships we had already over come and were about to over come and regardless of the outcome in the near (or far) future. He was ours.

I understand what you mean, all I am trying to convey is that those of us who have had it hard in our journey in NICU (INCLUDING MYSELF) need to look beyond the noses on our faces and realize that everyone experiences the NICU on some same level at some point (not all the time and not always the same level). It's not about the length of stay, it's not about the medical behind it, it's about the raw emotions that we all go through and deal with.

Yes, the medical is essentially part of it - for preemie moms and non-preemie moms. My 37 weeker was a footling breech with prolapsed cord - the nurses were panicing because they couldn't find a heart beat and kept saying the baby is dead. It's not easy hearing that just before they knock you out for an emergency c section with a nurse looming over you on the table with her arm clear to the elbow up your "who who". I have known the tears of fear for the life of all of my children. I just about had a 24 weeker (my second child) and at that time I doubt she would have survived but yes, I was lucky. She ended up being full term with intervention and hospital bed rest for 10 weeks.

I don't mean to sound like I'm diminishing your experiences or sound like I am being snarky. This is not a pissing match to me. I value the feelings and emotions of the people I've met in the NICU. Regardless of them being a 2 month stay, a hour stay or a 2 day stay.

I envy you Le Bec. You and your lo went through so much and from what I can see in your posts in this thread you are very passionate about your experiences and your little girl.

I think we come from different perspectives because I've gone through one difficult NICU stay and one that wasn't so difficult too. I have seen both sides of the coin.

[sarah1972]

Originally Posted by Sheal

I think that's part of the problem too. The word premature can be perceived by people in many different ways. What some consider micro prems others may consider just extreme prematurity. What about 28 weeker twins. My SIL's twins were 28 weeks but according the docs at the time, because there are two of them they step back two weeks as well to account for two babies making the twins 26 weekers. Under the reference you quoted the twins were physically extreme premature but under the perceptions of the doctor and the standards at the time (and their size really, both were under 2 lbs at birth) they were considered micro prems.

My only point was that regardless of WHY the baby is there every NICU mama (and papa) goes through the same set of initial emotions and subsequent emotions at one point and time. The sets of emotions and feelings for NICU parents whether it's a 2 hr stay in NICU, a 2 week stay or 2 month stay intersects each other on an emotional scale. The experiences may not be the same in length, health and size or prematurity (or lack of) but the emotions are fundamentally on the same level as each other.

My last post wasn't a pissing match at who's baby was more sick or who stayed longer and had more problems. It was to convey that despite our different experiences and what happened with our babies we went through the same range of emotions albeit perhaps at different levels of emotion at different times within our experiences.

You're absolutely right about the twins. I know a couple who gave birth to a 28-weeker who died 2 hours after birth. I'd say their NICU stay was infinitely worse than mine, and lasted 225 days and 18 hours SHORTER, without any surgeries either.

Obviously I had a micro with severe complications and a very long NICU stay. There were days when I got really really angry at the feeder/grower moms. It wasn't their fault either, I was just envious. I didn't want to sit on pins and needles anymore wondering if my baby would live. That's where the difference for me comes in. The feeder/grower moms pretty much knew their baby was going to live. I didn't have a clue for a long time and he got ill a couple of times that it scared the bejeesus out of me.

Interestingly, I know several preemies born at 28, 29, and 30 weeks who are worse off than my son right now, one trached, another with severe CP. Their NICU stay might have been easier, but their at-home lives are much harder.

And you know what, I have a lot of people come up to me and say "I know my situation wasn't as bad as yours.. but." I get the opposite feeling sometimes. I feel like I'm isolated because of my sick baby. I can't relate to other moms about just being a mom. Often times, the only people I can relate to are people with micros and parents of special needs children. These things can go both ways.

[homewithtwinsmama]

[QUOTE=Kodama;9711312]I am sick and disgusted that we are having a "my baby was sicker than your baby" snarkfest here. Grow up.

There are full term babies who have died. Still birth. That is 100 times worse than what anyone here with living babies have gone through no matter how long your NICU stay was. Why? Because atleast they are ALIVE and HERE with you. So what if your baby was on the vent longer than others? So what if you have a 24 weeker and think anyone with a 33 weeker should STFU? That is your issue and you have a lot to work through.

Your priorities and thinking are screwed if you are thinking this way.

As much as I totally agree with you I think this will be the straw that makes the mods lock the thread. I don't understand why someone would continue to try to revel in the drama of having the sickest baby and making other mothers feel they have it easy, but clearly there are those who won't let go. I had a baby die and honestly my experience of it was that my NICU stay with her twin was actually more traumatic. When I finally broke down and went for therapy the therapist and I were both surprised to find that the real root of the worst of my inability to cope was PTSD from the horrific NICU stay we had (chronicled under birth stories on the MDC website as A Crunchy Mama Makes Her Way in the NICU if anyone is interested). I had made pretty good progress on making peace with losing her sister, who would have been a severely disabled nearly vegetative bed/wheelchair ridden child had she managed to be in the 10% survival category I was given. That is to say that no one has any idea how they will react to trauma no matter how long or short it is experienced. I continue to be amazed that the MDC "community" has far to many women who feel the need to attack rather than support mother's going through rough challenges. And I am sick of investing in threads that what I consider "trolls" as they say on the net push to the point of lockage by the mods!

[Le Bec]

What you seem to be missing is that, just because I've said my experience is worse does not detract from how bad yours was. Your experience will always be as bad as it was but that doesn't make it equally as bad as another persons.

This is why I have a rule that I'm not to post comments in the heat of the moment. I really didn't mean to say "my".

Honestly, I think we're saying the same thing and somehow missing it. I agree, everyone must experience the same "base" emotions - I still talk to a lot of new NICU mums, a lot of whom have never had babies in the intensive care, they all say pretty much the same thing. As a mother fear for your child is *the* most powerful emotion. Woman do astounding things when they fear for their children.

That said, I honestly do think what makes a NICU experience easier or harder are those added extras (or lack their of). The length of time your child is ventilated or on CPAP, if your child has had surgery, other interventions they've had, seeing your baby born grey and not breathing (I have to say I can't imagine how scary that must have been for you to see what you did).

I envy you Le Bec. You and your lo went through so much and from what I can see in your posts in this thread you are very passionate about your experiences and your little girl.

I'm not sure Erin's doctors would agree that it's passion, they'd probably think it was pigheadedness. Seriously though, I've had to fight for her with doctors who didn't even want to have a pediatric team at her birth, and who didn't even know her name or that she was a girl but had decided that she was too weak and little to come of the vent, CPAP or oxygen. If I didn't advocate as strongly for her as I have we'd probably still be up at the hospital waiting for them to "let me" bring her home.

[irangel]

Ultimately I think it's a very raw topic for all of us as mothers. There are however certain emotions we can all relate to and I think we need to focus on what we have in common versus what we don't. Fear. Anger. Guilt. Sadness. Heartache. Inadequacy. These are all things that each and every one of us felt and we all need support as a result. I am truly sorry if I did offend anyone because that was not my intention.

[Le Bec]

Originally Posted by homewithtwinsmama

As much as I totally agree with you I think this will be the straw that makes the mods lock the thread. I don't understand why someone would continue to try to revel in the drama of having the sickest baby and making other mothers feel they have it easy, but clearly there are those who won't let go.

I don't know if this was aimed at me, though it probably was. I just want to say that I wasn't trying to out premmie anyone, though it probably came across that way, I was just trying to make my point understood.

[Sheal]

I agree, everyone must experience the same "base" emotions

This is what I meant, just lacked the proper words to convey what I meant or rather conveyed it in a different way.

Sheal

[Kodama]

I hope this thread does get locked and that everyone takes a look at their lives and realizes that they have a lot to be thankful for. Our little ones are miracles.

We have a lot to be thankful for this Thanksgiving.



That is the last of what I have to say about this subject.

[southernmommie]

I do not know or can comprehend where NICU moms are coming from. Nor do I try. These moms are going through a rough time in their own ways. My DD was born at 35+6 and I consider her preterm. NOT preemie (except in clothing sizes). She required absolutely no time in the NICU. So I cannot even pretend to know what these moms are going through just because my baby was born before the 37 full term mark. Those are just numbers when it comes to the health of your baby.

[annettemarie]

Mamas, at this point I am going to close the thread pending edits. Thanks for your patience.