BLOG Q: please help answer this question for The Preemie Blog

urbanflowerpot

Parents of full term children (and those without children) usually think that preemie-issues remain behind at the hospital when your baby is discharged. What are some situations you?ve been in where you?ve wished you could explain your situation better? What would you want to share with parents of full term babies to help them understand what it?s like to parent a preemie?

 

When responding please avoid typing "this" to ditto a previous poster - it makes it hard to convey what's being said when I put it into blogger-response-mode.

 

Thanks girls!

snoangel79

I'm a new preemie mom (5 days, my twins were born Friday at 34w2d, daughter had IUGR so she is small for her gestation).

I'm already annoyed at how many people think they "can just come home". Also, the, "I want to see pictures". My kids had CPAPs on and you cannot even see their faces well. Another question asked immediately is, "when will they come home". Which of course we don't know. I don't know if I'm just hormonal but it's definitely annoying to me. I do have a medical background  (not a nurse but work in cord blood donation and collect cord blood for use in transplants) and the funny thing is is some of the friends asking also do too. I would think they "would know".

gysberger04

I wish I could explain how difficult it is to remain on lockdown through RSV season and not be able to take my DD to baby yoga, mommy and me groups, or just to go go out to Target, the grocery store or out for dinner with my husband and DD.  Even though my DD is growing like a weed and is 4 months old now, we still can't take her out due to the RSV risk.  It is a pain in the a**** when I have to ask 'are you healthy' whenever I want to go to my mom's house for a visit.  Also, PTSD from having a preemie is real and you don't just 'get over it' once you take you baby home from the hospital - the mental effects of having a preemie in the NICU don't go away once you come home from the hospital; I still have a hard time hearing about full-term baby mom complaints and the inaccuracies presented on Grey's Anatomy regarding preemies.

Floridamom224

I usually lurk, but I thought that this was a GREAT blog question! 

My DD was born at 34 weeks.  She spent a week in the NICU, and a typical 34 weeker spends more time there, but she did very well, so she was able to be released at 35 weeks.  It has been really hard to deal with parents of fullterm babies...they think that things will work for a preemie just like they worked for their full termer.  It just isn't so.  I am trying desperately to BF, but with LO being in the NICU, even with pumping, my supply really stinks.  LO also got formula in the NICU, so I have had to battle with nipple confusion.  A close friend of mine keeps offering her breast feeding advice, which is so nice, but has no correlation to my child.  Her child was able to be with her in the hospital and be released home with her.  we have an uphill battle due to the NICU stay.  Other moms also think that LO is just like their baby, just a little smaller.  I have found that just like advice given when I was pregnant, I just have to take it in stride and remember to focus on me and my LO.  Only I know what's best for her, and even if it is difficult to hear the advice bc it is frustrating when others don't understand our situation, I am trying to do the best I can!!!

LuckyMom0203

By far, the hardest thing to convey to friends and family once we were home from the hospital was that she was STILL a preemie, and we needed to treat her as such.  Not only were we extremely vigilant about germs (wanting to avoid rehospitalization) but we were also trying to counteract all the stimulation she received for 3 months in the NICU.  I felt so bad that she was constantly surrounded by bright lights, beeping machines and loud nurses (not to mention all her procedures and surgeries), that I wanted to make her time at home as peaceful and unstimulating as possible.  Even her neurologist told us, "Make your home like a spa-- low lights, soft music.  Try to counteract the NICU."  So we did.  And I think people had a hard time understanding a lot of that for her first few months home.

tarapiag

The biggest issue that we've had so far with trying to explain to full term parents is the RSV risk and risk of getting sick.  We wash hands frequently and are on lockdown through the RSV season but are still getting questions and comments like "kids need germs" and people looking at us like we're being too overprotective.  While we understand both of those concepts and don't want to become helicopter parents, our LO's physical makeup just won't be the same as a full term baby until they catch up at around age 2, and it's just too risky to chance until then.  Once I know that her physical development can handle it if she gets sick, I will absolutely take her to mommy and me, play dates, etc. since I DON'T want her growing up "in a bubble".  I guess the take away I would want is that the after effects of a preemie birth can continue for months or years, and to please not treat me as though I am being "that parent", or as though "she's home, so everything's ok".  Even though she may look like a "normal kid" to you, not having the same amount of time in utero means that there are no quick fixes.

tarapiag

Sorry if this sounded too much like a lecture ; we've been explaining this for months and I guess we've gotten used to "playing defense" so to speak, when talking about it

kaylaaimee

That prematurity require treatment well beyond release and while some of that treatment doesn't look like medical treatment, it most certainly is. The things we do are by doctor's orders. I'm not choosing to quarantine my daughter, my doctor told us to do that. If someone else's doctor told them to give their child an antibiotic for strep-throat, no one questions that. My doctor prescribing a quarantine for my child is no different than that.

Another thing is that I feel very alone in parenting her. I can't go by the baby books or what my friends children are doing. My 15 month old still has to eat purees and drink Elecare. I am so sick of making purees and paying $$$ for that formula but I can't just feed her normal food because she has two teeth, oral aversion issues and is allergic to milk. Since every preemie is so different, they need more specified care in even the simplest things like eating. It is frustrating to feel like I can't do simple, caregiving tasks without first discussing them with a doctor or therapist and it is more frustrating when people assume that I am just being controlling. I'd love to be able to be care-free parent I want to be.

adrielegorburu

There have been so many times that I wish I had a hand out to just give people to explain things. I really find it hard to politely ask questions like "is she a normal baby now?" or comments like "if you keep her in a bubble she wont ever be normal" - one of my favorites "she needs to be exposed to germs or her immune system wont ever get strong" - usually I give a short rude answer like "she IS a normal baby - a normal PREEMIE baby" and "I'd rather her have a weaker immune system and survive to see her second birthday."  But I have to say that now that she is almost a year old - i've found it harder to explain how her birth has effected me. Its hard to explain that PTSD doesnt just go away. That Im physically unable to have another baby yet. That I have real concerns about going through all this again. also I'm planning a big first birthday party - no one even my husband seems to understand why I'm throwing a one year old a big party.  I'm celebrating her LIFE - that she made it this far - that we (DH and I) have made it through all of this.

jenmikw

Most of things we do are by doctor's orders.  I don't choose to keep DS on lockdown because I think it will be fun.  We do it because it is what is recommended and we don't want to end up back in the hospital because I decided to take him to the grocery store.  Stemming from this we get comments (mostly from casual acquaintances who ask things like is he doing this yet...) to that affect that our lockdown and "lack of socialization" is what is causing DS to be developmentally delayed, even for his adjusted age.  In actuality he is probably doing better than if we took him to the mall every day and to story time at the library because instead of him spending the time in the stroller we're on the floor doing his OT exercises for an hour twice a day.  

Another annoyance is that people just don't understand all of the eating problems that preemies have.  Yes DS is HUGE but that still doesn't meant that we spent, and are still spending, a lot of time with him working on his suck, swallow, breathing, and having things in his mouth.