Support for parents of preemies & NICU babies, #2 - Page 5

[jkpmomtoboys]

Originally Posted by etoilech

I do not agree with keeping (preemies) kids away from people for the first year. We kept Erik away from people we KNEW had colds and were sick, but I think you do them a disservice by not exposing them to normal environments. That's how their immune system grows.

It's all good and well if you don't agree with it, but preemies are not like normal babies and I think YOU'RE doing a disserve by giving people that one-size-fits-all advice.

My viewpoint is that I did not spend 2 months in the NICU with my son only to put him back in there because I was too careless or too selfish to see that his immune system needed extra time to grow without being attacked by viruses and bacteria. He had his whole life to be in "normal environments".

Like I said, I kept him home the first entire calendar year but also kept him out of public places the second cold and flu season as well.

I'm interested in seeing evidence that preemies' (or any newborn's)
immune system grows by exposure to viruses because I keep hearing that by lay people all over the place but have never seen it evidenced in any medical journal.

I believed in preparation, not luck, to keep my preemie healthy.

[etoilech]

Originally Posted by jkpmomtoboys

It's all good and well if you don't agree with it, but preemies are not like normal babies and I think YOU'RE doing a disserve by giving people that one-size-fits-all advice.

My viewpoint is that I did not spend 2 months in the NICU with my son only to put him back in there because I was too careless or too selfish to see that his immune system needed extra time to grow without being attacked by viruses and bacteria. He had his whole life to be in "normal environments".

Like I said, I kept him home the first entire calendar year but also kept him out of public places the second cold and flu season as well.

I'm interested in seeing evidence that preemies' (or any newborn's)
immune system grows by exposure to viruses because I keep hearing that by lay people all over the place but have never seen it evidenced in any medical journal.

I believed in preparation, not luck, to keep my preemie healthy.

Firstly, I am not giving anyone advice. I said what we did and what we were advised to do. I also said we did not have a sickly child or a child who had extensive difficulties... I may have felt differently and been advised differently if that has been the case.

I think telling everyone to vaccinate for RSV is one sized fits all advice, so pardon me for sharing our experience and what is or in this case is not recommended in Switzerland.

As for being selfish and careless by exposing my son to everyday situations. Whatever. :

You cannot keep them in a plastic bubble their entire lives and sorry that I think isolating ourselves for a year is over-cautious in the case of an otherwise healthy preemie. I don't know your kid's issues, obviously they must have warranted such caution.

If you want to read about immunology and how the immune system develops it's quite interesting. It is also interesting about how microbial systems factor into this. Just b/c you haven't read anything to the contrary, doesn't mean the information is not out there. As for being a lay, person... I have a degree in microbiology and molecular cell science. Which sounds far more impressive than it is, but does not make me a "lay-person" as far immunology is concerned.

I also spent 11 weeks in the NICU, so don't think I don't know what it's like. I just disagree about keeping an otherwise healthy preemie isolated from normal situations (we certainly didn't take him around sick people knowingly, what parent would?), b/c a healthy child's immune system can take the exposure and even benefits from it.

“It’s not the Germ - but the condition within the body.” - Luis Pasteur

[sweetpeasmom]

The staff at my NICU actually said not to keep her isolated. We brought her home in Jan and did keep her away from public places until April, after that i just went about our normal lives. I saw no reason in keeping her isolated more than that, i think you need to get a bit of germs here and there. I spent 15 weeks in the NICU with her but I didn't feel like i needed to keep her isolated, now if she had some severe health issues to deal with, then i would have taken that into account but she didn't luckily. This is the second winter season for us and i've taken her everywhere, lots of playgroups too.

[tikva18]

Well, my babies were not actually eligible for the rsv shots; for some reason they just got really whopped. I have been careful to keep them away from sick people, but not paranoid nuts - I am taking them out some - and was not advised to keep them away. In the meantime, Gedalya had to go to the E.R. yesterday, his hemoglobin is really low - we spent the day there and they let us go as long as we were willing to see the dr. on Mon. a.m. At least I trusted my instincts - I had been told that I was overreacting - I mean after all, he only has a double ear infection - why am I saying he's so sick. When they got his cbc results they wanted us to rush straight to the hospital - they were considering having to do a transfusion. At this time, we do not know what is causing the problem, but we've ruled out active bleeding and cancer, G-d forbid.

[Lousli]

I don't know if it makes you feel any better Rivka, but the RSV shots only protect against RSV, a type of respiratory virus. It would not protect against cold, flu, strep, ear infections, etc. It is usally only given to higher risk preemies (those born with underdeveloped lungs, those in daycare settings, etc.) In our case, Hazel had pretty great lungs, but her older sister is in preschool so they authorized her getting the shot for 2 seasons.

[etoilech]

Originally Posted by tikva18

Well, my babies were not actually eligible for the rsv shots; for some reason they just got really whopped. I have been careful to keep them away from sick people, but not paranoid nuts - I am taking them out some - and was not advised to keep them away. In the meantime, Gedalya had to go to the E.R. yesterday, his hemoglobin is really low - we spent the day there and they let us go as long as we were willing to see the dr. on Mon. a.m. At least I trusted my instincts - I had been told that I was overreacting - I mean after all, he only has a double ear infection - why am I saying he's so sick. When they got his cbc results they wanted us to rush straight to the hospital - they were considering having to do a transfusion. At this time, we do not know what is causing the problem, but we've ruled out active bleeding and cancer, G-d forbid.

My son had to have a transfusion for the same thing. I hope that they can get it to come up with supplementation (iron, my son was supplemented in the NICU and at home for 6 months with Actif ferrin).

They couldn't find any reason for Erik's problem either. Eventually we had to have a transfusion. It wasn't fun, but he was MUCH better afterwards. His iron levels dipped again, but they didn't want to do another transfusion b/c they said his body had to take over and it wouldn't with continual transfusions. It eventually got better and he was fine.

I'm so sorry you have to go through this. It's so hard. Listen to your instincts mama. They will serve you well.

RSV stands for respiratory syncytial virus. My son had it last summer (!) at about 2 years old. Not all cases are a problem. Erik's case was very mild. It was treated with inhaled steriods, a cortisone nose spray, and inhaled ventolin (albuterol for you Americans ). It didn't take long to clear up although it did linger and we have to watch him a bit with colds. He's fine.

I can understand vaccinating preemies with lung issues and other health problems, but it's not always such a danger and a lot of kids have RSV and never know it.

Anyway, I hope your little ones are feeling better and they can get the hemoglobin levels up without transfusion. If it comes to transfusion, please PM me if you wanna talk about it.

take care!

Olivia

[tikva18]

Originally Posted by Lousli

I don't know if it makes you feel any better Rivka, but the RSV shots only protect against RSV, a type of respiratory virus. It would not protect against cold, flu, strep, ear infections, etc. It is usally only given to higher risk preemies (those born with underdeveloped lungs, those in daycare settings, etc.) In our case, Hazel had pretty great lungs, but her older sister is in preschool so they authorized her getting the shot for 2 seasons.

I am aware of that. we had a number of risk factors, but not the ones to warrant the vaccine. Our ped was pretty upset about it. Fortunately, my babies did not have lung or heart problems. Some of the risk factors which we have: 'overcrowded' home ( I have 5 kids), school-age siblings, low birth weight, early birthdate..

ear infections are just luck of the draw kind of thing

[Sleepymama]

My full term NICU baby (heart defect) has always gotten sick so easily. As a baby he was in daycare for about a month when I went back to work (he was 9 months) and we had to take him out because he was sick from the first day he was there. He just gets colds on top of colds and then secondary infections and it just gets worse because he couldn't sleep while sick. And he stops eating and growing. Anyway, I keep thinking that exposure is going to make his immune system stronger and it is just a very slow process. He still at age 3 gets sick at the drop of a hat, and we decided to take him out of preschool last summer for cold & flu season. He might get to go back later this spring, not sure.

He also should have gotten the RSV shots the first year but there was some disagreement between his peds cardiologist (who rec'd them) and the shot clinic, who wouldn't give them to babies with cyanotic heart defects because of the risk of pulmonary hypertension (PC says that is bogus). By the time they worked out their disagreement RSV season was over. We never took him anywhere until well after his surgeries were done anyway, and we didn't have other kids then.

[eilonwy]

My son tends toward anemia; he's never needed a transfusion (kenahara!) but it could still be in his future because he's got an enzyme deficiency. BeanBean is G-6 PD deficient; in the presence of certain chemicals, his red blood cells will essentially melt. : They found it in his newborn screening, but my state (PA) does one of the most comprehensive newborn screens of any state in the country. Is it possible that this is what's wrong with your little boy? G-6-PD deficiency is a sex-linked, genetic trait, meaning it's much more common in boys than in girls (though if your son has it, any daughter of yours has a 50% chance of being a carrier for it). You can read more about it here. In general, it doesn't cause any problems for either of us, but I do have to be aware of it. He can't take sulfa drugs or drugs that contain sulfa drugs (like bactrim, for example), or a whole bunch of other medications (asprin, antimalarials, etc) and I couldn't take them while I was nursing him. A glass of tonic water (contains quinine) could prove fatal for him, as could exposure to mothballs or fava beans.

These things aren't terribly difficult to avoid in the modern world, but like I said I have to be aware of it. BeanBean knows that he can't drink tonic water, and he knows to ask if something is seltzer or tonic water before he drinks it. He knows that he is *never* to take his sister's medicine (or anyone else's) unless Mamma or Daddy gives it to him (BooBah spent the first year of her life taking bactrim every single day to prevent UTIs). His grandparents all know that he can't have chick peas or fava beans, and if it's not a familiar food they will ask me before they offer something to him. One time MIL recieved some hand-me-downs for BeanBean which had, for some unknown reason, been stored in mothballs. I tried to air them out, but they kept that mothball smell until he'd outgrown them, so he never wore them; I wasn't about to take any chances. Other than that, it's never come up, but that's because we're careful about it.

[CarenSwan]

I've been so happy to see all the interest in a Preemie/NICU sub-forum. I know that would make it a lot easier for me to ask some of my questions. Here's one for you all: some of you have mentioned low iron levels in your preemie. My little Clara Justice has recently started solids, and I'm wondering if I should pay extra attention to getting iron-rich foods in her. Overall she's been pretty healthy, though she has had her share of nasty resperitory sickness. I want to get her iron levels tested when we go for her 9mo well baby visit. Do any of you have any thoughts on this or experience?

Also, to anyone in the NICU!

[etoilech]

This may be an unpopular opinion, but I really think my son's low iron and subsequent blood transfusion was due to too early cord clamping. I can understand clamping the cord and cutting if the baby is in distress or needs O2 or mum's own iron reserves are too low and needs a managed 3rd stage, but my son had apgars of 9 and 10 and I was perfectly healthy. I'd be interested to hear other people's experiences and thoughts on this.

CarenSwan, we did try to pay attention to iron rich foods in the first year. It ws hard, but I do think it made a difference. One of his first foods was turkey pureed (just cooked in the oven with a touch of olive oil and pureed with breastmilk). We also tried to pair foods so we got the most out of the meal. I'll have to find my book. I used Annabel Karmel for recipes (her weaning advice was crap, but recipes were great). I also have sheet from my NICU about pairing foods for maxium benefit... it's in German, but I can translate it.

[Periwinkle]

IMO you should definitely stay on top of iron levels in a preemie. I also think the *combination* of prematurity, early cord clamping, low milk intake (and low stooling), and jaundice lead to low iron levels... it's a quadruple threat. I supplemented iron for both of my (preemie) twins until they could eat iron rich foods.

[CarenSwan]

Thanks for the thoughts on iron, Olivia and Periwinkle. I'd love a few suggestions on food pairing for optimum iron absorbtion. I have no idea about how/when her chord was clamped, because she was delivered via emercency c-sec and I couldn't see what they were doing. I'll have to ask my dh if he remembers, because he watched the whole thing. I'm assuming that they clamped it immediately as they whisked her off, but I'm not sure. No one (no drs, I mean) has talked to me about iron supplementing, so I'm not sure if that's because they think she isn't at risk, or because it's just fallen through the cracks. I'd love any suggestions of good stuff to read. Olivia, someone loaned me that Karmel book and I basically wrote it off when I read the intro about nursing and weaning, but I'll have to give the recipes another glance.

[sweetpeasmom]

My dd needed some blood transfusions and was low on iron while in the NICU. They gave her a supplement. I was told to give it to her when we went home, but honestly i never did. She had primarily just bm up until the time she had her iron tested at her 1 year appt and her levels were just fine. She had a delay in her cord clamping, i was part of a study on preemies and delayed cord clamping. I think back and think it's odd that even when she got the iron supplement she was still low in iron, but she's fine without the supplement. Then i read that some things high in iron are just hard to absorb, so maybe that goes for that supplement? honestly i don't know. I know that eating founds high in Vit C do help tremendously with iron absorbtion.

I wish we did have a preemie subforum, it would make things easier to discuss.

[crissei]

I had a perfect moment, in a perfect day!

Earlier today me and DS were sitting in the grass watching DH
dig in the garden. I was knitting leggings for DS and he was staring at the clouds when a huge swallowtail butterfly landed on his little hand! DS stayed very still and watched it flap its wings a couple of times before it flew away.
It was such a special thing to see.
Today is DSs one year adjusted birthday.: I'm feeling so happy all around. I have now met my original goal of BF DS to his corrected birthday, which seemed so impossible in those early days and months. And I see no end in sight!

[CarenSwan]

Congrats on your awsome committment to BF your little one, and Happy Birthday to little Bobby! What a beautiful moment with the butterfly! We're up in NH and no where near able to dig in the garden... *sigh* Enjoy spring!

[Jillbob]

Sorry for jumping in with being active for so long. We were doing great until recently and all of a sudden I feel like I've been hit with a train. Dd is doing great, she's not talking (at almost two) but I'm not really concerned about that, plenty of full term babies aren't talking at this age and she understands so much of what I tell her.

I'm the one having problems now. I suddenly feel like I did those first days in the NICU. My emotions are all over the place. I cry at the mere mention of premature babies. It's getting kind of ridiculous.

A little back story so you don't have to sort through the old thread to get my story lol. Ds1 was born at 31 weeks by c/s due to severe pre-e and hellp. He did great, came home after 4 weeks, mild developmental delays but great otherwise. Ds2 was full term and I was hoping for a VBAC but he was breech and the backwoods town we lived in at the time was not equipped to deal with that, nor was I educated enough. Dd was born at 28 weeks, due to fetal distress, low cord blood pressure, and pre-e.

I always thought I would have a vaginal full term birth. It was a given. The only woman in my family to have c/s was my aunt who didn't want to deal with the mess of going through labor (her words). My best friend is at the hospital right now having her 4th baby. I'm so jealous of her full term vaginal births it hurts and I hate that. I resented my sister and SIL for theirs as well. I've been told it's normal, but to feel so hateful about these women I love is tearing me up.

I just wanted one. Just one chance even to have a baby the way I wanted to, the way nature intended. I keep telling myself that in the grand scheme of things it's not that big of a deal. My children are wonderful. They're happy, healthy, goodnatured children with beautiful souls and I should be grateful they're with me, and I am, but...I don't know.

I know a lot of this has to do with dh and my decision not to have anymore children. We always said "3 or 4" but after dd was born he was adamant that we have no more children. I can' blame him, and after a while I came to realize that I couldn't risk it either. He had a vasectomy a couple of months ago. It hit me the other day that I'm not going to have any more babies. I'm never going to hold a newborn in my arms that I don't have to hand off to someone else again. When ds2 was born, dh was deployed and I sat alone in the hospital room holding him every minute I until we were released. It was amazing. I nursed him right away. There were no breastpumps, no tubes, no monitors, no wires. Just my baby and me getting to know each other. The nurses kept checking on us because we were so quiet and I never rang them.

Sorry this is so long and rambly and completely off topic from what you ladies were talking about lol. I just needed to say it "outloud" to someone who would understand. Thanks.

[Jillbob]

Ah crap I've got bad timing lol. Happy birthday Bobby!

[jkpmomtoboys]

I hear what you're saying. It's important to mourn the birth you never had. I spent a long time screaming at the women on "Baby Story". It started to get better when I accepted that this was the plan for my kids. (ds1 29w crash c/s; ds2 planned c/s due to circumstances of crash c/s) And that you know, it stunk and wasn't the plan, but I wouldn't want any other kids. Or any other life. And having my boys the way I did taught me so much. It taught me about expectations, about courage, about humiility....

Sorry if this is rambling...they are clamboring for challah french toast and I must run...

But I understand where you are coming from and it just takes some time.

Oh and when you get that baby urge, do what I do--I call one of my friends who has just been up all night with a newborn...

[jkpmomtoboys]

ack double post...