While Finn was still in the hospital, I found this discussion. It's a collection of observations from parents of preemies. I have pulled out some highlights, with my comments in italics. This has been written and revised a few times, so it often refers to the time when Finn was still in the hospital, and the tenses are all messed up. It pains me, as a writer, but time is short for two-handed typing.
•Please don't judge me or my choices (this includes my birth choices and choices made in the NICU). This was not my dreamed for pregnancy, and nothing is going the way I want it to.
Seriously, people. Nothing good can come of being judgmental at such a time. Indeed, one would not think that people would judge, but it happens. Humans can't resist the chance to spew their opinions and prove that they are right. Sometimes the judgment comes in the form of a "helpful suggestion." I have found that advice and suggestions are only helpful when I ask for them or when they come from nurses or doctors at the NICU. "Helpful suggestions" are usually passive aggression cloaked in a shiny patina of good will. It's like getting a hot casserole of tuna noodle disapproval. To which I reply "No thank you. Would you like a steaming mug of shut the f*ck up?"
• Unless you are a doctor, please don't give me medical advice, unless I ask for it. (Even if you are a doctor, but not mine...) I got really tired of having to explain over and over again to people that were not medical providers why we were doing what we were. If I ask, give me your opinion.
See above. People just can't help themselves with this one. I bet I have done it to someone else. With the interwebs and the Power of the Google, everyone can look up information on preemies and tell us all about it, if they want to. The thing is, we know best at this point. We are in contact with the nurses and doctors who are caring for our son. We are in contact with our son himself, and we will either know what is best, or we will find out directly. Or, we will talk to other parents of preemies. Thanks for the help, but we are quite capable and knowledgeable.
• Please don't tell me how hard the last few months of pregnancy are or complain how horrible it was to be overdue around me.
Sweet merciful christmas, this is ridiculous, and it covers a few areas of stupid. First of all, you are whining about something I wish that I had. Why don't you tell me all about how hard it is to keep your Prius clean or what a pain it is to be constantly running our of deposit slips.
It would have been far better for both baby and I to be overdue than to endure two and a half months of hospital care. Second of all, you are not making me feel any better by telling me how much it sucked to have the thing I did not have, even if you are trying to make me feel better. The pain of full-term labor, the lower back pain of a third trimester, the exhaustion, the discomfort... really. I wish I had known those things. It's not that I look back in regret or think about this daily; I am thankful for what we have, but people don't need to remind me of what I missed.
• Don’t tell me about how lucky I am to not have to go through the last month or two of pregnancy.
Someone just said this to me in the yarn store. I understand that they are trying to be light and breezy, but I'd rather be pregnant. Don't get me wrong, we are in love with our baby, and we are happy to have him, but it would have been better for everyone had I gone through the last three months pregnancy. I had it happen again at the drug store when a college-age woman saw me, with Finn in the sling, and squealed "OH CUUUUUTE," drawing a one syllable word into polysyllable land. "How old?" "He's almost four months," I said, but he was born at 25 weeks, so he's a little small." "Oh my god, so lucky! You didn't have to go through all that pain." Yeah. I would much rather inflict that pain on a small infant than go through it myself. After all, at least he can't complain about it. Grown ups are such whiners.
• Don’t tell me how it’s ‘no big deal’ and everything will be fine because people have preemies all the time and they are just fine.
heh. Lots of preemies are just fine, and it's amazing what they can do nowadays. We are thankful for all the knowledge and technology. I know that people just don't know what to say in such a situation sometimes, and they are trying to be reassuring. I have not heard that it's "no big deal" from anyone, which is good. It was the littlest, biggest deal there has ever been in my life.
• Don't tell me how lucky I was to have my babies at the hospital so I could recover and catch up on sleep. There is nothing more in this world I wanted then to have my babies with me at all times. There is absolutely nothing 'lucky' about having babies in the hospital.
This is just a shade away from the whole "get your rest now" comment that I love so much. Again, I think it's just misguided positivity. People trying to "look on the bright side" of a difficult situation. I would think that the person who says something like that might go home and think "My god, I can't believe I said that." I know I would.
(Bitchy me would like to answer that comment with "Yes. We are lucky to have him in such a lovely, five star resort type situation. Nothing better than paying $6500 a night for room and board. Also, I think it's super fun to hook my boobs up to an electric sucking contraption six to eight times a day instead of a whimpering baby.")
• Don’t judge me if I have to go back to work while my baby is in the hospital. I may have used all my leave on bed rest, and have to go back to maintain the health insurance.
In my case, I have not used up my leave, but I feel that I need to be at work. I am taking my leave in fall, and we need two incomes. I would rather not be working, it's true, and I feel my obligations pulling me in two directions. Obligation to family and obligation to work. I worry that both are suffering, and I am trying to balance it out. No one has made me feel bad about having to work, but some people have made me feel bad about not holding my baby enough. Passive aggressive behavior rocks. I have received some surprise that I am back working, probably because of the emotional ramifications, but they expressed themselves with concern rather than judgment.
• Call and ask if I want visitors. I wanted people to come see my baby, but I needed to know so I could be there. Most NICU's have a limited visitor policy, so I need to be able to do some planning.
This is true. Not many people have met Finn. It's not that we don't want visitors, we just have to coordinate. So far, three friends and three family members have met him. That's it. It's hard for me to make plans, it's hard for me to be spontaneous, it's hard for me to make decisions. The only thing I can really count on is when I go to the hospital. Everything else is filler.
• Please do not expect to hold the baby, as my time holding my baby is very limited and honestly, I can't spare that time with others.
amen. Also, while Finn was in the hospital, we preferred to be the only ones who held him, not only for infection risk reduction, but because we wished to be bonding with our baby.
• Please don't continually ask me when my baby will be coming home. I have no idea.
This does not bother me. I understand that people are curious. And we really don't know. I would probably ask the same thing.
• Please don't compare my baby to other preemies you have known. Maybe I'm the only one but even the positive stories bugged me because I wasn't sure my son was going to be one of them.
The Other Preemie Stories don't bother me. It's good to know that we are not alone. I had no idea how common this is.
• Please tell me how cute my babies are and try not to go overboard on the "look how tiny!" stuff.
Again, does not really bother me. He's tiny. It's interesting.
(Of course, NOW he's enormous.)
• Please take your cues from me and the other people in the NICU and don't freak out at every alarm.
They are unnerving, but you get used to them. I have not had anyone freak out, but he does not have many visitors aside from us. Once you get used to them yourself, you can explain them to others, and it's not so bad. (Of course, when I hear them now, like on a videotape, it takes me right back there.)
• Research is great. Educating yourself is awesome. Please do not act like you are an expert on the subject because you read something on the internet or know a friend of a friend. Each baby is unique and different, and as such my baby may not fit into what you have read. Please do not attempt to teach me about my baby.
Thank you! I don't really need suggestions from lay people. I'll ask questions when I need answers. Usually, I will ask a nurse, doctor, or pharmacist if it's a medical question. If it's a mothering question, I'll probably ask my mom. I mean, most people don't like unsolicited advice in normal situations, especially parenting ones, think about how welcome it is in this situation. Usually, this is someone who just has an opinion about what you are doing wrong, and then has looked for supporting information so that they can tell you they are right. It's not usually about us or the baby, it's about themselves.
• Don’t expect me to answer your call or return it within the first 4 weeks of my preemie's arrival.
Four weeks? Wow. This person was being really good. It's been almost two months, and the last thing I want to deal with is the phone. And we are even pretty much into a routine! I have not seen most of my friends, I have not done many social things, our couples time together is mostly doing errands or being at the hospital. (He's been home for three months now, and I am still finding it difficult to return phone calls and emails, and it's even harder to get out to see people.)
• Don’t expect me for dinner today, Sunday, any upcoming holiday maybe for the next year. Now, because I will spend it with either my family at home or in the NICU. Later because your child may give my baby RSV, and it could hospitalize her or kill her.
This is something I am coming to realize... more about it later...
• Don’t use animal words or toys to describe them.
• Don’t ask about doll clothes.
I don't think that this would bother me either. He's really small. He was really, REALLY small. Not talking about it or noticing it does not make him bigger. I compare him to food, like meat or grain measurements.
• Never compare my baby to a runt.
Someone actually said something like that?! It's hard to believe.
• When you come into the NICU to visit my baby, focus only on my baby...don't peer at anyone else's baby. Privacy is nonexistent in the NICU, so we parents and visitors have to respect others' right to privacy and keep our eyes and ears on our own babies only.
This was hard to do. You are surrounded by up to five babies, and you feel some amount of concern and curiosity about all of them. When one is not there anymore, you usually notice, and you can only hope that the baby was transferred for good reasons. We are not sure, but we think that at least one baby may have died in Finn's last room at the NICU.
• Also if I am crying it isn't Post Partum Depression, it's because all my hopes and dreams for a healthy pregnancy, vaginal delivery and healthy baby have blown up. I don't need medication, I need support!
So far, I have cried five times, I think. I could probably name them all. That sounds like fun! I cried when I saw him in his isolette for the first time. I cried when I arrived home from the hospital without him. I cried the first time I visited him without Pete and his belly was swollen and someone asked me how I was. I cried the morning after he had his 11 spell night. I cried one night at home because I missed him. I think that's it. Oh wait; I cried in Snuffy's Malt Shop. I don't remember why.
Six times. It's lonely, leaving your baby in the hospital. It's not that I am "trying to be strong" or anything. I am not sure what it is. Maybe I just don't have time for it.
• Please don't preach to me. If you have not been here as the mother of a sick baby, you don't know anything about this.
No one likes preaching. Least of all someone who does not go to church.
• Please don't "should" on me. I'm doing my best. Please don't tell me how I "should" feel, react, behave. Please don't tell me I "should" live at the NICU, or judge me for staying at the hospital all the time.
No one likes "should-ing." Pretty much never say "You should have..." to someone. It's not helpful, and you can't go back and change it. Again, it's some trying to make themselves better by pointing out that they were right.
• Please understand that while my baby is in the hospital that is where my focus is. Please don't expect me to come to social activities.
It felt like a betrayal to be out having fun while Finn was in the hospital. Rationally, we knew that it was not a bad thing to do; that we did, in fact, need some fun time, but it usually felt strange and not all together... fun. Now, it's really hard to be away from him. The longest I have gone is six hours. At that point, I start to get jumpy. Not to mention that by morning, my boobs feel like basketballs and I can pump a full bottle in five minutes.
• Please don't give me parenting advice. I'm not really parenting my baby anyway; I'm doing what the hospital allows.
Parenting advice to preemie parents. Now that's rich.
• It is not easier to be a new parent to a preemie because I'm "resting and letting someone else take care of her." I want to be taking care of her. Waking up every three hours to pump is not restful, and it is much, much harder than waking up next to your sweet newborn baby.
Makes. Me. Crazy. People kept telling me to get my rest while I could. Because having a baby in the hospital was so relaxing. We were working and going to the hospital at least twice a day, and I had to pump. We still had to eat and take care of the cats and the house. Pete had gigs. There was no rest. I think that the two and a half months of hospital frenzy made this part, the time at home, both easier and harder. I was not rested when he came home, and I have not caught up. At the same time, we just get to be home now.
• Don't ask me what I need. I don't know what I need. Give me some suggestions if you want to help. Like "Can I take your laundry home and bring it back?" "Can I come load your dishwasher and wash the pans?" Can I clean out your car?"
During the hospital time, I have found that my ability to make decisions is gone when it comes to what I want or about making plans. It's easier to choose between options. When given a decision, I think about all the ramifications of each option and weigh them. I can't just say "Yes" or "No." I have to explain myself. When it comes to food, unless I have a craving, which is rare, I have no idea. These things are probably not new, just amplified by this experience and the general scattered state of my brain.
• Please congratulate me on my new baby. Please do not act like my baby is dead. Please do not send "thinking of you" or condolence cards. Please send me a congratulations on your new baby card.
See, now I thought the congratulations were weird. People don't normally receive congratulations for something that was done incorrectly. It was not an achievement, having a preemie.
It is, however, an achievement to get through the hospital experience with a healthy, happy baby and still be able to get along with your spouse or partner. I feel pretty good about that part.
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