Parents of former NICU or Preemie babies ??? - Page 3 - Mothering Forums
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#61 of 182 Old 04-21-2004, 12:56 AM
 
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Originally posted by Quirky

ITA with the posters above commenting about the anti-APness of the NICU: the nurses were constantly telling me I should put my son back in the plastic box because he needed to rest quietly. Ummm, no, my baby needs to be held by me or my husband.


This was, by far, the most frightening and frustrating aspect of having my son sequestered in NICU. It blew my mind that these NICU nurses weren't up on the latest literature (meaning 1990 on) and actively encouraging me to hold my son as often as possible. One nurse actually blamed my kangaroo care (which they begrudgingly allowed me to do) on his inability to feed as they wanted him to feed. She said I was spoiling him and I was also tiring him out. he needed peace and quiet to sleep properly. Drove me up a wall!

Momma to DS 1, age 8 and rainbow baby DS2 4-21-11.
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#62 of 182 Old 04-21-2004, 10:56 AM
 
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I was encouraged to hold Eli, even when I was still on the Magnesium & very weak and I needed someone else to help me with him. There were always people willing to help me nurse, and he never got a bottle or formula.. but he was much bigger than most of your babies, maybe that's the difference?

Rynna, Mama to Bean (8), Boobah (6), Bella (4) and Bear (2)
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#63 of 182 Old 04-21-2004, 01:54 PM
 
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Originally posted by eilonwy
I was encouraged to hold Eli, even when I was still on the Magnesium & very weak and I needed someone else to help me with him. There were always people willing to help me nurse, and he never got a bottle or formula.. but he was much bigger than most of your babies, maybe that's the difference?
I think it's more luck of the draw and location rather than how big babies are. I know that in Seattle, a friend of mine just had a baby who will be in NICU for about a month, and they have NICU set up in a special unit so that the babies stay with the moms in a private room. the nurses monitor via computer and are in very close proximity. The moms are encouraged to be as hands-on as possible.

Here in the south, you don't see that as much, if at all (I would love to know of hospitals in the south with stay-in-hoispital mom rooms for NICU pts).

My friend also told me that this is the only hospital in Seattle that has this kind of set-up.

Momma to DS 1, age 8 and rainbow baby DS2 4-21-11.
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#64 of 182 Old 04-21-2004, 07:38 PM
 
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Just an update as Bay had his one year check up yesterday (he's 13 months). He is 31 1/2 inches long and still just 18.9lbs. The doc suggested that we give him pudding, ice cream, and other high fat stuff?!?! I will party when he finally reaches that damn 20lbs mark. My life is trying to get fat on this kid~

Kimberley
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#65 of 182 Old 04-21-2004, 07:56 PM
 
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Originally posted by geekgolightly
I think it's more luck of the draw and location rather than how big babies are. I know that in Seattle, a friend of mine just had a baby who will be in NICU for about a month, and they have NICU set up in a special unit so that the babies stay with the moms in a private room. the nurses monitor via computer and are in very close proximity. The moms are encouraged to be as hands-on as possible.
That's how it was where I delivered. I was offered the chance to sleep in a room just off the NICU and have Eli with me the whole time he was there. I had to decline because I was totally unable to sleep when he was near me, I was so eager to spend time with him.

How did you ladies deal with not having the birth/labor/delivery/taking baby home situation that you'd planned on? I have to tell you, it was beyond shocking to me not to have Eli room in with me, to say nothing of not being able to take him home... . I was absolutely beside myself. I still am! I can remember being given a pamphlet at WIC while I was pregnant (designed for single teen moms-- I look very young. : ) where a girl is talking to another girl and says her goal is to take her baby home from the hospital with her. I looked at my mom and said "That never occured to me, to have that as a goal. I'm sure my son will come home with me." Famous last words, I guess.

Seriously --never in my wildest dreams did I imagine this. I told my niece she could visit him when he was born, but it turns out they only allow siblings into the NICU, so she wasn't able to see him. My heart still breaks when I think of this. I was so upset when I found out! She didn't talk to me for two weeks because of it, and we've always been very close.

I worry about it happening all over again.. thinking I'm going in to have a healthy, term baby and finding out that something's gone wrong and she'll have to stay at the hospital and Eli won't get to see her (he's too young even for siblings and he hasn't had the chicken pox or the chicken pox shot) and my nieces won't get to see her and it'll just spin my head like it did with Eli, only it'll be worse because I have to divide my time between Eli and NewBean.

We had an ultrasound that indicated a potential problem with NewBean's kidneys (it looks like she might only have one) and she'll have to have an ultrasound after she's born to verify. Most of what I've read has been reassuring; she's definately got one working kidney and most people do very well with that. Still, my mind swims with "what if's" and I sometimes find myself starting to panic about it. It was hard enough for me to leave Eli in the hospital, but at least when I was there with him I felt like I was in the right place. If NewBean needs to stay in the NICU, I'm going to feel torn every time, because I'll be with her, but her big brother will be waiting for his Mamma. . I have not told my nieces that they can visit NewBean in the hospital when she's born for that reason alone... what if they can't?

Rynna, Mama to Bean (8), Boobah (6), Bella (4) and Bear (2)
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#66 of 182 Old 04-21-2004, 08:48 PM - Thread Starter
 
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He is 31 1/2 inches long and still just 18.9lbs. The doc suggested that we give him pudding, ice cream, and other high fat stuff?!?! I will party when he finally reaches that damn 20lbs mark. My life is trying to get fat on this kid
I think this is extremely common, and I'm not sure why, to tell you the truth. My dd has grown like a weed from day 1, but ds has always struggled to stay on the charts. Right around 6 months his growth curve tapered off at 5th percentile! Anyway, at 23 months he is 33.5" and 23.5 lbs... he is pretty skinny, but is a very healthy kid. His height is around 50% I think and head is 75%!!

Anyway, we tried feeding him higher calorie foods back around 1 year, which wasn't a great success - the end result was he got fuller and so ate less. In other words, the net calories were still basically the same. And worse still, he was getting his calories from cheese toast and Kozy Shack pudding and such that he was starting to expect foods like that, I mean all the time not just occasionally. We realized pretty fast that was a disaster waiting to happen, and went back to offering mostly very healthy fare.

But most recently, he has been putting on the weight in the past couple of months. He always had "gut" issues for lack of a better word - loose poops, frequent poops, etc etc (sorry.. tmi) - but since starting him on Baby Jarrowdophilus (probiotics) his poops have firmed up nicely and he is up to almost 10th percentile in weight now, up from 3rd at his 18 month check-up.

Here is my PERSONAL opinion of what the problem was... I think his being preemie meant he didn't get that transfer of my immunogloblins and antibodies etc from the start (as this placental transfer occurs at the end of the 3rd trimester) PLUS he had a round of antibiotics (and none since - live and learn) at 6 months which I'm sure wiped out his gut flora. 6 months is when his weight started tapering.

If anyone's interested, there are some great threads in Health & Healing (e.g., Power of Probiotics) which were a great help to us.

HTH.. fwiw.
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#67 of 182 Old 04-21-2004, 08:55 PM - Thread Starter
 
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eilonwy

Your post made me want to cry right along with you. I hope your sweet bundle-to-be is healthy and also that you don't have to choose between your two children when the time comes. I know our month-long NICU stay was hard enough as it was, but at least I got to be with BOTH babies at the same time. I never really thought about that side before - my heart really goes out to the mamas who had another little one (or more) at home while baby was in the NICU.
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#68 of 182 Old 05-24-2004, 04:37 PM
 
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I've had two Nicu experiences.

My first baby I carried to full term. Perfect pregnancy, vaginal birth, no drugs, just perfect. I had him in my room for about 48 hours (if even that) and they took him to the NICU. Why? Well, when we had him circumsied (I was'nt thrilled about it at the time, but now am thankful) the circumcision would not heal and just bled all day. My husband felt there was something wrong and asked the doctors to look at it. They figured out he had Neonatal alloimmune thrombocytopenia. Basicly while I was pregnant I formed an antibody that was crossing over the placenta and killing my baby's platelets. It is a very rare disorder. Brandon only had a platelet coun't of 11,000 when normal is about 120,000. They told me they were not sure if he was going to live or die. This tore my heart apart, I could not believe it, he looked fine. They gave him a transfusion of doner platelets and he made it through the night. The next couple of days they gave him 2 or three transfusions of my platelets and then he started to build his own. It was so hard going home without him, especially since he was my first baby. I could'nt bare to go home and see an empty crib (we lived in a one bedroom apartment, so his crib was in our room), so I stayed with my mom. Brandon was in the NICU for a week, I could at least hold him all I wanted to when he was in there and touch him. It was hard seeing the tube coming out of his head where they gave him transfusions and he had the wires for the monitors (3 of them) and his little foot was so bruised from them poking it to get blood samples for platelet counts. Today he is a happy normal 6 year old.

With dd we knew she would probably be in the nicu, because she was certain to have the same problem. They gave me a treatment called IVIG for 10 weeks to try to slow down the antibodies that were crossing the placenta and killing the platelets. They took Hailey by c-section at 32 weeks so that she would not get any internal bleeding (the longer you keep them in with this disorder, the more the baby is at risk of getting an internal bleed and dying, my son was very lucky).

She came out great, she was 3 pounds 10 oz and the steroids must have worked, because she could sure scream. I got to see her for a few minutes before they stiched me up. Her platelets were fine and they gave her a little bit of oxygen, because she was breathing fast, but other than that they said she could probably breathe room air. They gave her 3 days of IVIG (one treatment a day) and she had a feeding tube she pulled out after 2 weeks and of course the wires for apnea, heart, etc... and a tube in her arm (she had it in her head for a day). Again it stunk to go home without her, I cried when they released me from the hospital.

I could touch her in the isolett, but the nurses told me when I could take her out. That stunk. This one nurse would only let me hold her for about an hour. That was heartbreaking, because I lived on the other side of town and that was the only time I would be there to see her, I could not be with her as much as I was with my son (he was born at a different hospital). It was even worse when she was moved to a crib, because they would cover her up and I could not see her just to sit and look at her. I took comfort in knowing that this was a sign that she would be coming home anytime. Hailey was in the NICU for 3 weeks and came home on an apnea monitor. Thankfully the alarms that did go off were all false. She is doing great today, they don't even have her on the preemie chart.
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#69 of 182 Old 06-07-2004, 03:57 PM
 
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#70 of 182 Old 06-07-2004, 06:32 PM
 
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Originally Posted by khrisday
The way the soap smelled- if I smell it again I feel sick to my stomach. The hospital my dd was in was an hour drive from our house, and although they found us a place to stay in the city across the street, we did have to drive back and forth several times. For the first few years afterwards, if we drove to the city I cried on the way. Even seeing a carpool van from the universtity made a catch in my throat. My dd did have to have part of her hair shaved for IV's. It felt like it would never grow back. I put her in hats for all of her baby pictures.

Uuggh, that smell. I smelled it once since my NICU experience, and it about knocked me down. I was shocked with the emotions that came with one whiff of that smell.

I dont know if I should even be posting here- My baby did not make it home from the NICU. he lived there for 3 weeks. I cant imagine any longer.
I feel for all you mamas. It makes no difference, 1 day or 300 days- a NICU experience is no fun.
That was 7 years ago, and now it feels like it happened to someone else. I walked around that place in a fog, I dont know how I lived then, I think back and it feels like I was on auto pilot, horrible, scary time.
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#71 of 182 Old 06-07-2004, 07:03 PM
 
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Hi all,


I am in tears having just read all of your stories. I am another one who didn't expect to not take her baby home with her.

I had an awesome pregnancy, wasn't sick, felt great, swam up until the day I went into labour. Labour wasn't even that bad.

I was nearly at 42 weeks when I went into labour.

I had been in labour for about 18 hours by that stage and was fully dialated, but had no urge to push. My dr. was on vacation (she had warned that she was going to be away during spring break at my very first appt and we had joked at the time that I would definately have my baby then) and the OB who was covering for her thought that breaking my water might allow her to move into position and allow me to need to push. (Breaking my water was the only invervention that I had had at that point)

When they broke my water, everything started to break loose. I looked as though I had pooped myself. My water was brown and thick with meconium. They figured that she had had some type of stress at least a week prior and had been practice breathing the meconium for that entire time.

Her (we didn't know the sex at this time) heart rate started decelerating with every contraction and we decided to go with the emergency c-section. There were two drs. an OB, four nurses and an anthes. in the room. The Anthes was trying to make me laugh by cracking stupid jokes ( I don't think that they realised the seriousness of her problems at that stage).

When they got Jade out she was green from soaking in meconium for so long, the inside of my uterus was green. They pumped her lungs and stomach and got a greater volume of meconium out than a newborns lungs and stomach could possibly hold. They literally ran out the door with her, giving me a 10-second look as they raced to the nursery to get her on o2.

DH went with her leaving me alone in recovery in serious denial that I had even had a baby, let alone one with serious problems. By the time I had made it back to the mat ward, they had arranged for a paediatrician and transport team to fly in to bring her to the nearest major centre.

When the paed. came in, he told us that she had a 15% chance of even making through the night and if she did there were so many potential side-effects - CP, brain bleeds, seizures etc etc etc. They were going to put her on an occillator ( sp) which is a super-industrial strength ventilator which shakes to help force air into the lungs. If that didn't work they were going to have to do heart-lung bypass surgery to place her on a machine called ECMO ( extra-corporeal membrane oxygenation) to breathe for her.

ECMO works by inserting two catheters into the jugular vein, down to the heart, one brings old blood out and runs it through a circuit to re-oxygenate the blood and the other brings the new blood into her body to help her breathe.

She did really well on this and was off in five days ( they had told us that she would be on it for two weeks) and on a ventilator for a week after that ( had been told four weeks for the vent). She did amazingly well and was out of NICU and SCN after a total of five weeks.

I have been amazed by the stories of non-AP hospital staff that the majority of you have experienced.

My experience couldn't have been more different that yours. As soon as Jade was disconnected from the tubes in her belly button ( were using those instead of IVs) I was able to hold her and could hold her as much as I could. Every dr and nurse encouraged me to pump, bring her to my breast, hold her spend as much time as I wanted in the nursery.

When the only reason that she was still in the hospital was because she wasn't eating they actively tried to discourage me from bottle-feeding my EBM to prevent nipple confusion. I had been getting major pressure from DH and SIL to just give her the bottle so we could get out of there and try and get BF established at home.

I had not had any problems pumping and ended up donating over 1000 oz to the milk bank and got named the "dairy queen"

We got out when Jade was five weeks old and finally got bf established at eight weeks, after working with seven different LCs and OTs.

She is 26 months old, still nursing, no problems at all.

We are truly blessed and like a pp said, definately see the world and parenting through different eyes than I would have without this experience. I believe that Jade is here and went through this horror in order to do amazing things in this world. I have learned so much about the human spirit, the sheer will to live and the incredible strength that these tiny bodies have. I never take her for granted because I recognise the incredible gift that I have been given.

Thank-you all for sharing your stories with us.
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#72 of 182 Old 06-15-2004, 11:02 AM
 
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#73 of 182 Old 06-15-2004, 11:57 AM
 
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interesting timing that this got bumped! My 29 week (completed) preemie ( 2lbs 8 oz) turned 4 yesterday!
Sometimes its so hard to believe that we've made it this far!
Many blessings to all of you and your families!
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#74 of 182 Old 06-15-2004, 01:08 PM
 
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I thought this would be a good thread to keep going.
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#75 of 182 Old 07-21-2004, 12:58 PM
 
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I would love some advise on makeing preemie cloths. Any one want to comment on there experience with this? Specificaly organic fabric, 3 sizes, wool jersey baby wear?I want to make for a friend and know very little about what would be good.
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#76 of 182 Old 07-21-2004, 01:20 PM - Thread Starter
 
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I think it is wonderful you're thinking of making baby clothes. I cannot express in words how amazing it was to see my babies in real clothes for the first time there in the NICU.

So, re: clothing... it depends if the baby is in the NICU still or not.

If in the NICU, I would recommend:

* 100% cotton knit only -- babies are in heated isolettes
* Short sleeves -- won't interfere with IVs on hands/lower arms
* Open legs (no footies) -- won't interfere with IVs on feet/ankles
* Snap or tie fronts - for easy dressing/undressing
* Snap or tie bottoms (e.g., a onesie outfit that comes from the back under the crotch and snaps in front mid-belly; plus the top of the shirt then buttons down from the neck) -- for easy diaper changes
* White or "quiet" prints in soft colors -- nothing to harsh or jarring for baby

If just out of the NICU but still too teeny for 0-3M clothes, follow the same guidelines as above if the baby is on an apnea monitor, breathing tubes, feeding tubes, IVs, central line, etc. Otherwise, just make nice outfits suitable for any newborn who sleeps all day (e.g., footie pajamas, soft knit hats, etc.). Use completely soft fabrics -- wool sounds too scratchy to me for a preemie, who can be very sensitive. Make sure snaps, zippers, appliques, etc. are well covered against baby's fragile skin. Remember that until babies reach their original due date (or a little beyond) they have trouble regulating their body temperatures, so I found breathable cotton terry to be wonderful (long sleeves, long legs) even in the heat of summer which is when my babies came home from the hospital.

I hope this helps!
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#77 of 182 Old 07-21-2004, 01:50 PM
 
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Neat thread! Just found it! My preemie is going to be 2 years old on the 25th. She was a 33 weeker and weighed 2.1 pounds. Her total NICU stay was 4 months. She had alot of surgeries while she was there from her genetic abnormalities. None from her prematurity. She was on a vent on and off for a lng time and went home on o2 and apnea monitor. Our hospital was very AP friendly. We were encouraged to hold and talk to her often as long as we could devote more than 45 minutes per session to holding her. They didn't want her being taken in and out and getting cold and tired. That was understandable. I was allowed to first hold her at 6 days old before her first surgery. She was still on a vent with a UAC line but I think the doc feared I'd never hold her if not then. It was all very hard and emotional for all of us. My first daughter was only 2 when she was born so it was very hard having to divide my time that way. Luckily, my DH is military and he was given leave the whole time she was there. It was 2 hours away from our home and we stayed in a hotel near the hospital. We only went home one time to get clothes ect... I'm scared to death of this ever happening again. I never want to enter another NICU as long as I live.

THE SOAP! OMG, the other day I was at my OB and I took my 4 y/o with me to the bathroom for my urine dip and as we washed our hands we just looked at each other... I cried. I hate that smell and love it at the same time. So much pain surrounded that smell but I knew it meant I was close to her, almost there...My daughter remembered that soap too. She said "hey mama, it's NICU soap!"
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#78 of 182 Old 07-21-2004, 04:52 PM
 
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My daughter was born by emergency c-section nearly four weeks ago. She did not have to go to the NICU, but there may be something wrong with her kidneys; I'm keeping my fingers crossed that it's just a strange thing which won't result in anything serious at this point. Even so, she has had her blood drawn four times and had two ultrasounds since her birth; she's scheduled for another ultrasound next week, just before her one-month appointment.

I've been hoping fervently that I'll never have to see the inside of the NICU again, but if there is something seriously wrong with Rivkah, and she needs surgery or more interventions she's probably still too small for PICU (not that that's much better. ) Her kidney issues have left me feeling seriously conflicted about NICU's and dividing my time between her and her big brother.

Eli is growing beautifully; you'd never know that he didn't come home with me from the hospital. People tend to think he's older than he is, though, and because he's smaller than average I'm still asked if he was a preemie (which he wasn't.) "Wow, he's really small for two and a half!" Yes, that's because he's 20 months old. :LOL He certainly acts two, though.

Rynna, Mama to Bean (8), Boobah (6), Bella (4) and Bear (2)
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#79 of 182 Old 07-21-2004, 06:35 PM
 
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My daughter Delilah was born at 26 weeks gestation. She was 2lbs. She was a twin, and her sister Melody died in eutero of Cystic hygroma, which is a pretty rare genetic disease. The twins were identical and sharing an imbulical cord, so when Melody died, Delilah started pumping her own blood into her. As a result, Delilah's heart became stressed and enlarged, which is a sign of a heart beginning to fail. They did an emergency c-section after chancing it and giving me sterroids for two days. They warned me that Delilah would probably have the same disease as Melody, as they were identical twins sharing an umbilical cord, and that she would not be expected to live beyond age 3. She had many complications after birth, such as not being able to breath, having a hole in her heart, the list goes on and on. One day one, the Doc told me not to name her or see her, because she was not expected to live past that first day and it would only make it harder for me. Well, she did live, and soon was able to feed through an umbilical line.

It turned out that she did not have the Cystic hygroma, which they said had never happened before, and that we would be in some kind of medical books as the first case. She was in the NICU for about a month and a half, but was improving so quickly that they soon moved her to the next nursery down, which is like an urgent care. I did not have the same experience as some with the hospital. They encouraged as much contact as possible, and tought me how to care for her as much as possible. When they would be doing a particularly nasty procedure (like the pick lines up her arms into her shoulder in order to find a vein big enough to i.v.) they would have me put my hands on the underside of her feet to give her support. She had been at Stanford medical hospital all this time, and once she was 4lbs they were able to bring her down to the local hospital in an ambulance, and she came home a month later at 5lbs.

She is doing great now, she is 4, very athletic, the top dancer in her ballet class, she swims like a frog, and was accepted at a school for advanced and gifted children. She is still small, but they said she may always be smaller than average due to the extreme conditions of her birth.
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#80 of 182 Old 07-21-2004, 09:33 PM - Thread Starter
 
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Just reading through these posts is so empowering. It's amazing what obstacles little ones of all shapes and sizes have overcome!

eilonwy - I really hope your adorable baby (I love the photos!!) is OK and this is long behind you soon. p.s., your son is ADORABLE!!
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#81 of 182 Old 07-23-2004, 11:34 AM
 
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Wow, thanks for starting this thread. Very timely for me to have found it today too.

My little Veronica is a graduate of both the NICU and the PICU. I won't post our whole story today because it still just gets me to upset.

Veronica was born on her due date super healthy great pregnancy. But she has Down syndrome and a CHD. She spent 4 days in the NICU.

Today is the one year anniversary of her open heart surgery. She spent 12 days in the PICU.

Now we are facing another open heart surgery and are meeting with the surgeon on monday. I just hate thinking about it.

I know what you all mean about scars. Veronica has "vampire bites" on her neck, foot, groin, a "lady bug" from her chesttube, and of course her "zipper".

She is pretty far behind developmentally but moving forward so that is all that matters. She is still pretty small I don't even know if she has doubled her birth weight yet.

I am glad to have found you mama's. I have been feeling very alone lately. I remember when she was first born thinking now we are one of those families that I used to feel sorry for and said I can't imagine having _____. but now I don't have to imagine I have to figure out how to deal with it. My friends who try to be nice but can't think of any thing to say so they comment on how long her hair is getting(that she looks like she has a comb over- NICE) and tell there kids not to tell me how much better their baby is doing than Veronica. There needs to be some sort of handbook. Or maybe I need to stop telling people with babies it is hard for me.

Ah, I am rambleing and just having another one of my really bad days. Sorry.

I do have to add...I just wish my friends and everyone could get to meet Veronica and really know her. She is just the sweetest little thing. She is always happy and smiling. She is the light of our lives and a real joy. I wouldn't trade her for the world.

Christi
DS1(12), DD(7)blessed with T21, DS2(2), and DD2 - newly arrived 1/28/11
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#82 of 182 Old 07-23-2004, 03:27 PM
 
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I have tried several times to post to this thread but every time I can't bring myself to. I guess my emotions are still too raw.

As I read through all the posts, I'm flooded once again with the emotions the NICU produced. My daughter was born at 23 weeks due to unstoppable preterm labor, weighing in at a might 1 pound 5 ounces. Her birthday was the saddest day of my life. I remember during her delivery the doctor told me to push and I faked it. I thought there is no way I am going to assist in forcing this little life out of me. I was able to see her for just a moment before they took her to the NICU. I was told at best she had a 40% chance of survival and if she did make it, most likely she would have some major health problems. It was more than a week before we were able to touch her and about a month before we could hold her. We spent 116 days on a roller coaster of emotions. But some amazing things happened during that time. How many people can say they watched their baby develop nipples? Three days before my due date, DD came home and other than some eye issues, has been healthy and gaining weight wonderfully. She'll be 9 months on Saturday and weighs 15 pounds.

We had a wonderful NICU staff that encouraged use to hold as often as possible, once she was healthy enough and to breastfeed. (Though after 110 days of pumping, my milk was no where to be found.) I feel for those moms that did not have a positive NICU staff, that would make an awful situation unbearable.

I have not come to terms yet with the loss of a "perfect" pregnancy and birth. I don't even know what the third trimester is like! I long to be pregnant again but am terrified of another NICU experience. Finding support is probably the hardest thing now a days since unless you've gone through the NICU experience or have a special needs child, most people don't understand what it is like.

Does anyone else struggle with feeling personally responsible for their babies health problems as a result of their own body failing?

Nap time is over,
Michele

Michele - Homeschooling mom to Hadley, (10/03 - the 23 week preemie miracle) and Noah, (08/05)
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#83 of 182 Old 07-24-2004, 08:41 PM
 
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Quote:
Originally Posted by hadleys_mom
Does anyone else struggle with feeling personally responsible for their babies health problems as a result of their own body failing?
I feel this way too, just because I have yet to experience the perfect, easy, natural pregnancy, labor, delivery, that people are always raving about. Eli went to the NICU, there's something wrong with Rivkah's kidneys (though it's looking more and more like something we'll just watch)... It makes me feel a bit defective. Especially with my water breaking the way it does. It's like, my amniotic sac doesn't actually "break" it sort of slowly disolves and the fluid leaks out so slowly that I can barely tell it's happend (and the doctors can't tell at all, until they do an ultrasound and see that the fluid is gone). Why me, what am I doing wrong? This time, I took in gallons of vitamin C, hoping that my sac would remain intact, and it didn't work, it melted away just like last time. Only this time, I didn't have contractions, I didn't go into labor at all. It messes with my head.

Your baby had a much rougher time of it than mine did, but I can still relate to how you're feeling.

Rynna, Mama to Bean (8), Boobah (6), Bella (4) and Bear (2)
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#84 of 182 Old 07-24-2004, 09:01 PM
 
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my son Jack was born at 34 weeks unexpectidly..i was actaully induced after my water broke. He was fine and didnt need the NICU, however because of my previous "preemie" baby they kept a close eye on my cervical length during my pregnancy with grace and it kept getting shorter and shorter. At 19 weeks they sent me to a perinatoligist to see about getting a cerclage put in. When i got there they said i was 100% effaced and 1-2 cm dilated and there was nothing to stich
he said he was sorry, but i was too far along to help and to drive home the 2 hrs and call my OB
My ob admitted me, on Aug 12th of last year and there i stayed upside down in trundellenburgh (sp?) and full of drugs until oct 18th when Grace was born at 30 weeks. She was 3 lbs 12 oz and 17 inches long. She stayed in the NICU A little over a month and now at 9 months is holding her own.

I was seeing an OB and a HB midwive together...had i made it to 37 weeks, she would have been born at home. I hate to seem greedy since i am lucky to even HAVE her...but i morn my "dream birth". She is prob my last baby and that saddens me as well
I am also upset by what i did to jack. He was a nursing 2 yr old at the time who was used to being home with me all the time..in fact he had NEVER had a babysitter up until that point. He needed to start full time daycare the next day and had a HORRIBLE HORRIBLE adjsutment.
He refused to eat, drink, play or use the bathroom the WHOLE day and all he did was cry. They ended up putting me on zoloft for my horrible depression.

I have to stop writing now..i am too emotional...
i'll continue later
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#85 of 182 Old 07-25-2004, 02:36 AM
 
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I've been looking for a thread like this! Elliott was born at 34 weeks. One day I went to the OB for my regular appointment, the next thing I knew I was in the hospital. I had pre-eclampsia. My blood pressure was very high, and I was completely puffy. I felt like a mess. They gave me a steroid injection for Elliott's lungs, and an iv full of magnesium to control the blood pressure. I felt like crap for two days. Finally, they delivered him by c-section Friday morning.

I definitely felt guilty that my problem forced him out early. Luckily, he had no major problems. He stayed in the NICU for two weeks, to gain weight primarily. I was torn between wanting to spend every minute with him, and wanting to rest.

Whenever we're out of the house and people say, he's so tiny! Or, how many days old is he? (He's 8 weeks!) I feel incredibly protective.

We had and, to a certain extent, have a lot of problems with breastfeeding. Finding a good LC changed everything. He's finally on now, but I still have to give him bottles because he wasn't gaining. My next challenge will be to slowly remove the bottles.

Sometimes I think about whether or not we'll have more kids, and whether I'll ever be able to give birth naturally.
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#86 of 182 Old 07-25-2004, 02:53 AM
 
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Well I know this is for former NICU or preemie babies but I didnt find anything for current so here I am.
My daughter Mia was born June 17th 04 at 24 weeks. She weighed in at 1lb 3oz. She is now almost 6 weeks old. This is by far the worst thing for a parent to endure. I keep trying to tell myself it's making me stronger but every time I walk into the NICU to see my baby my knees get weak and every phone call I get from the hospital makes me feel like I am going to pass out. The emotions of this roller coaster ride is very draining.
She is now 1lb 12oz. Her major issue is lung problems. She was just put back on the oscillator last night, her lungs are in bad shape. She has a cyst on her lung that is getting bigger and she is battling high CO2 levels in her blood. She has had no brain bleeds. She had a PDA that closed with her first dose of meds. She had many seizures and for now is on long term phenobarbitol (?sp) and is also on morphine to help relax her. They said she is too active and aggrivated so the phenobarb is helping to calm her down. She has had 2 rounds (3 days each round) of steriods. She also had the surfacant when she was born a total of 4 doses. She also battled low blood sugars which she has pulled through and also low blood pressures. She hasnt needed meds for her blood pressure for almost a week.
I know she has a very long road ahead of her. I would give anything to hold her. They keep telling me maybe next week. My arms feel so empty.
This might sound weird but how many of you felt like you wanted to get pregnant again? I keep thinking maybe this time nothing will go wrong, maybe I would be able to carry longer. My DH said I just feel that way because I have HAD a baby but the baby isnt here with us. I guess I will feel more like a mommy when I can hold her. She IS my last baby. I have 2 other kids and actually signed a consent form to have my tubes tied but ended up delivery in a different hospital and they would NOT tie my tubes. They said they couldnt because of the situation. I know I cant get pregnant again but what I wouldnt give to be able to have a normal pregnancy. Mia was my 9th pregnancy. I had a 24 weeker 14 years ago who weighed in at 1lb 4oz but he only survived 22 hours. I had my DD at 35 weeks she was 5lb 5oz and my DS at 36 weeks he was 5lb 15oz. The other pregnancies were miscarriages between my 4th and 5th month. My 2 kids that I do have were hellish pregnancies. Mia's pregnancy was horrible too. Here I sit no longer pregnant and with a micro preemie WHY would I even THINK about wanting to get pregnant again?! I am nuts!
Well that is me and my story. I made a web page for Mia that ya'll can check out HERE

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#87 of 182 Old 07-25-2004, 09:01 PM
 
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Lori - I am so sorry that you are going through this after such a difficult series of pregnancies and losses.

Nobody can understand what you are going through better than those of us who have been there with you.

Hugs and prayers for you and your family.

Lisa
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#88 of 182 Old 07-25-2004, 10:50 PM
 
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to all of you for sharing your stories, and prayers to those of you who are going thru this now.

Dd was born by semi-emergent c/s at 31 weeks 4 days. I had been in the hospital the greater part of a month for a placenta previa, bleeding, and finally preterm labor. She was in the NICU for 5 weeks, and did very well, but it was still a nightmare as all you know. Our NICU was good about letting me kangaroo her, nurse her, etc., but some of the nurses were horrendous - one told me my milk was too rich and that was why dd was vomiting her first feeds! Another gave another mom a hard time about holding her baby, which was especially sad because she was commuting from an hour away and couldn't be at the hospital much. My biggest complaint is about the LCs - they were incredibly good at getting moms to pump, but not so good about actually helping babies to nurse! Before I left the hospital, one told me that I'd endanger my child if I just nursed her at home!!! We were very lucky to get the breastfeeding thing down on our own - in part because dd "got it", and also because I had previously nursed ds. Still had tons of trouble with thrush because of all the antibiotics both of us had been on.

I have a lot of guilt too about leaving ds. Thank God, he weaned himself at 19 mos, just a month or 2 before I was first hospitalized, but the separation was so hard on both of us. Dh was amazing through the whole thing. He took almost 2 mos off from work, basically moved down with ds to the hospital where we were, and helped keep us all together. (The NICU was 3 hours from our home - I had left home at 27 weeks pregnant and was gone for 3 months!)

Dd is now an amazing CHUNKY (!) 19 mo old. Still nursing! She's a very spirited child and the world's worst sleeper, which I wonder if it has to do with her early experiences.

I'm very grateful that she is so healthy. No more pregnancies for us, tho' - my chances of having another previa are extremely high, and I never ever want to go thru all that again!
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#89 of 182 Old 07-26-2004, 12:55 AM
 
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Paige,

What does semi-emergent mean? Sort of an emergency or a baby who is partially vaginally delivered?

Thanks,

Lisa
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#90 of 182 Old 07-26-2004, 11:17 AM
 
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Hi Lisa,
What I meant was that it was urgent but not emergent, ie, I didn't have to have general anesthesia. Basically, I had started bleeding again (right after dh had brought me a piece of key lime pie), and the doctor said, the baby's stable, you're stable for now, it's time to deliver you. Vag delivery wasn't an option because of the previa, my placenta was covering part of my cervix, and dd was footling breech to boot. I tried and tried to negotiate one more day with the doctor but no go. In retrospect, it was a huge relief to have had it all over with, even tho' I would have liked her to stay inside a few days more.
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