Thursday, April 26, 2012
...but we wish it did! All of us have heard comments like, "Well, s/he's home now - isn't it great to have life back to normal?" Except anyone who's had a full term baby (or no baby at all!) have no idea how different it is being a preemie parent. Sure, their weights are up and they're starting to look normal by your standards but behind the scenes we're rushing them to more specialist appointments than most adults have had in their lifetimes, speaking in codes and doing math in mLs, and frequently still responding to alarms. Even after equipment is gone we're on a totally different timeline - a preemie alter-universe - so please respect that.

Here is what some of our moms wanted to share. Please feel free to add your thoughts on this topic in the comments below.

First of all I would say..once you're a NICU mom.. you're ALWAYS a NICU mom.. I talk in ML's (vs. oz's) when I'm talking about how much my baby eats; I always feel like I'm educating people on why she's smaller, why she eats differently, etc. NICU moms are in a cult all their own.. :). I would ask for full-term baby mom's to consider our feelings when they talk about 'nesting' or 'getting the baby's room ready'..for most of us didn't get to do that. My baby wears oxygen for a little 'help' .. I'd like to explain to every one that looks at us cock-eyed.. that my baby won't be on O2 forever.. that she was actually off of it for 35+ days in the NICU then she had surgery for something ..and got back on it. Instead of throwing us the 'oh no poor baby' daggers.. ASK! OR.. MYOB! :)

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".

Party planning, visitors, outings, etc. Especially in the 1st year... Keeping them "cooped up" is a life saver, not something that is harmful to them or a disservice. It's for their protection, building immunity is a fine line for these preemies.

I also wish I had the answers about "when" this will happen or that will happen or "why". Oh and another thing I'd add, that preemies to qualify and "need" certain things that FT babies don't (such as therapy, and in a lot of cases additional health benefits), we aren't "taking advantage" of things, its because our children actually NEED these.

Being a preemie parent makes it very complicated to come up with an answer to "How old is your baby?"

The whole sickness thing. Yes, they look big and healthy, but their lungs are not the same as if they were born term. Therefore, I still need to be diligent about something as minor as a cold, even if she weighs 12 lbs.

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.

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!!!

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.
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.

Once a preemie mom, always a preemie mom. It's so hard to explain and have others understand that preemie babies, even though they have left the NICU, are much more affected by illnesses, especially RSV.

I think it's hard for FT moms to understand how our whole first year (and more) are so different. Especially for those of us who are quarentined. Constant vigilance about germs, countless visits to specialists, and not doing "normal" things... like playgroups. Also, preemie moms expect and even welcome therapy. We watch closely for any sign of delay and overanalyze it to death. We live in a constant balance of anxiety and justified worry. And birthdays are both cause for celebration as well as a day to remember trauma.

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.

I wish people would understand that just because LO is past her due date now that doesn't make her like a full term baby. We still have to be careful with germs and her development (milestones) are going to be 2 months behind. It's not fair to compare her with her cousin who was born full term 3 days after her.

Definitely the visitors, but for us, trust was a really big thing. It took us a good month to let anyone even hold him. I was so afraid to let anyone except DH hold him. He was past his due date before anyone besides us or medical personnel... had held up, and boy oh boy did I hover. I guess in my subconscious, I felt like only we knew what he had been through, and thus, only we knew how to hold him or take care of him. To this day, only 2 other people have even fed him. He is almost 7 months old.

Also, we aren't 'those' parents who are crazy and germophobes. There's a reason.

I am still traumatized by my child's sudden birth. Although she is here, healthy and happy, those feelings haven't just disappeared for me.

The restricting visitors/being overprotective/staying home during rsv season...a lot of family members and friends just didn't get it. We got a lot of slack from some family members in Pittsburgh when we didn't make the 5 hour trip to visit... for Christmas this year. My cousin said these words on Christmas eve to the rest of my family "my friend has twins and she doesn't keep them cooped up in the house all of the time. I can't believe they didn't even come for christmas". There is a reason the twins get rsv shots every month, why we avoid public places other than the doctors office, why we won't let anyone in the house if they've been around someone who's been sick, why we have hand sanitizer in every room and make sure everyone uses it before touching the kids. It's not to be mean, to be hermits, or to be "crazy" parents. Even though they look like "normal" babies, their immune systems and lungs aren't just yet. I wish people could get this.

One more: not all preemies are equal. Your friend's 2lber who was on breathing treatments for 4weeks probably needs more "lockdown" than my 2lber who wasn't on any breathing treatments after the first few hours. Trust that both your friend and I have discussed post nicu care with our team of specialists and are following accordingly.

I am just starting my nicu journey and am already annoyed mothers of full term babies. Nora was due the day after mothers day, and one of my sisters were up at the nicu yesterday and I said something about if she is discharged before day that I guess my first mothers day would be a quiet one. And she didn't understand why if she was discharged she couldn't be with our family that day... I tried nicely to explain that her being a premie is a whole different world than my sisters born at full term...yeah she still didn't get it.

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.

and I'll wrap up with this powerful letter:

Dear everyone,

You might not understand what it's like to have a preemie and I pray to God that you never know what the inside of a NICU looks like. I speak a language consisting mainly of acronyms like PDA,CPAP,P...ICC, CBC and many others. I don't intend to dumb things down when I speak about my NICU experience, you simply won't fortunate for you.

I spent 139 days in the hospital watching my baby struggle to breath, suffer numerous medical procedures and the pain of that will never go away.

Being a parent to a preemie means being extra cautious about every single thing my baby does or does not do. You may think I'm crazy because I use hand sanitizer 2947928472 times during our ten minute conversation.

When I say your baby is so fat, cubby, big...pretend I said your baby is healthy and looks great...because that's really what I mean. That being said, I apologize in advance for going on and on about trying everything to make my baby gain weight.

The acronym language continues post-NICU so if you need further explanation, don't hesitate to ask, us preemie moms love informing the general public about our preemie. There's this horrible flu-like virus called RSV, that's Im scared to death my preemie will contract you'd think it were the bubonic plague.

My preemie gets OT, PT and ST. She is DHH. Yes we receive SSI, which helps with her medical costs. That's all code for she receives occupational, physical and speech therapy. She is deaf/hard or hearing (the life saving antibiotics she received in the NICU damaged her auditory nerve). We receive supplemental security income to pay for her medical costs.

My preemie is a miracle...this has changed my entire view of the world. The fact that my baby is still not sitting on her own, crawling, pulling up onto furniture, or speaking full sentences makes my heart hurt but seeing my baby smile, wave and eat Cheerios warms my's the seemingly little things that amaze me.

I don't mean to sound unkind but not all preemies "catch up" by 2 so please don't feel sorry for us. Don't pity my baby.

Other stuff just FYI:

1. Vaccines are not the worst thing I've seen my baby endure....please don't compare.

2. Please don't always bring up the preemie thing....we are "normal" people....let's talk about baby stuff like which diapers you use, share your teething tips with me and make me feel like any first time mommy.

Preemie mama to a 24 week miracle baby


Diana Hood said...

My daughter is now 8 years old and was born at 30 weeks. She weighed just 3 pounds and 4 ounces. She was in the hospital for 6 weeks. If you are a mom of a full term and or healthy baby you have no idea how it feels to leave your baby at the hospital to go home not knowing when you are going to be able to take them home. Even the last week that my daughter was in the hospital, my daughter's release was almost put off more because of an alarm, but thank God the nurses did not hear the alarm. And the problem fixed itself just as quick as it was created. There was an alarm(BRADY) that checked her heart beat. If it went past a certain number then they added 5 days to her being in the hospital. The alarm only went off for a second then her heart rate went back to normal. The nurses never responded to the alarm. Which was fine with me, I was ready to get her home. Now she is a very healthy and smart girl who is actually tall for her age. She has some allergies, but they are minor. She was small and did not hit the milestones for babies her age till she was about 2. After that she just took off. I couldn't be more blessed and grateful that being a preemie has not held her back. To this day I still can't watch baby shows and how perfect all those mom's deliveries are. So for all those mom's whose babies are preemies and may be small or developmentally behind, don't give up hope that your baby will be another miracle and be absolutely healthy later on. Keep your chins up. I will all be alright.

Laume-White Lady said...

Thank you so much for this. My water broke at 25 weeks, spent 6.5 weeks on bed rest in the hospital and had my son at 32 weeks. He looks healthy and it's hard to explain that he's not. He randomly gets cyanotic around the mouth and nose due to poor oxygen exchange. But he has chunky cheeks so he must be fine. Smh. Everyone keeps wanting us to come over for the holidays and it's just hard!

Precious and priceless so lovable too, the world’s sweetest littlest miracle is, a baby like you.

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