july 23- so your friend is having a preemie...

i got the idea to do this from a fellow preemie mom blogger. i think it is a fabulous idea to talk about what preemie parents need, want, and could use. i know if i had a friend or family member who had a preemie, prior to our experience, i would have had no idea where to start. here are a bunch of ideas:

for parents

• knowledge is comfort- as scary as it was to start reading about the things that could go wrong with wren... it also helped me to feel involved. i could ask educated questions, better understand what i was told, and make better decisions about her care. i took the advice of other moms (and the book itself) and only read what pertained to our situation. it can be overwhelming and ominous to read about all the possible things that could happen.
• "preemies: the essential guide for premature babies". this can be found at borders, barnes and noble, amazon.com etc. it seems to be a common book and has so far been close to exhaustive for our experiences.
  
• "preemies" by dr. sears. this is one that has been recommended by several moms, but i haven't actually read firsthand.

• help with kangaroo care- it was a rather odd experience to hold wren for the first time. with the micro preemies, and perhaps some of the larger ones with certain problems, they are held skin to skin. we had to take our shirts off (and i took my bra off) and hold her to our chests. it was such an amazing time, but also a little weird. it's not what you expect holding your baby will be like. we have a few items, and want a few more, that make this experience the best it can be.

• a soft, rather warm, robe. i have a $15 ralph lauren steal that i picked up from ross. thadd wears it too. it has enough thickness to keep her warm, but is soft on her sensitive skin. i don't know if my husband even noticed, but it really helped me to feel less like i was in a hospital to wear something of my own. (rather than a hospital gown, which they gladly give us if/when we need it.) the babies typically need extra blankets if you use a hospital gown. it's just easier and more emotionally comfortable to wear a decent robe from home.
• a hand mirror. we still don't have one, and i wish we would have picked one up a month and a half ago. it is SO nice to be able to see her while i'm holding her. to watch her sleep. this is something that you can't do, when the baby is skin to skin on your chest, without help. i think this also would keep me from looking at the monitors so much. a nicu parent spends more time looking at the beeping screens than at their child... so it's nice to have your attention somewhere else for a change.
• some cute receiving blankets. these are good if you do have to use a hospital gown, or if the baby has a particularly hard time keeping her temp up. i say "cute" because every picture of anyone holding her is going to be of kangaroo care. if i need a blanket, i want a cute one.
  

• having a baby in the nicu is dang expensive for most people. we are SO fortunate to have our healthcare covered by the military... but there are still so many things that crop up when you have a preemie.
• for instance, we are lucky enough to be located pretty close to our baby, and yet, spend approximately $15-20 PER DAY in gas. it is 50 miles round trip to visit the hospital. i usually go during the morning/early afternoon, and we make another trip in the evening together when thadd gets off work. that is 100 miles a day just in hospital visits. that's not including the everyday errands that a person has to make. our car gets 25-27 miles to the gallon. and gas has been $3.something out here. all that to say, it just adds up quickly. and many parents don't have the luxury of making a trip each day because their babies are too far away- they're looking at room and board, long term, hours away from home. you can help by giving them giftcards. lots and lots of giftcards. one of the most thoughtful gifts we've received is money for gas.
  
• nicu parents are always needing to eat. whether you can help out by providing meals, fresh or frozen, or giftcards to restaurants in proximity to the hospital. we have many families from church who live close by, or on the way to the hospital. they have been amazing to have us over and be happy to let us eat and run. it is a HUGE support.
• it's easy to get carried away at parenting, especially when your child is sick. we've had to make time and budget money for dates, because it got away from us for a while and we could see a change in our relationship. (yeah, we've been trying to kill each other lately! a big sorry to our neighbors. :) between work, housework, church, visits to the hospital, everyday life, stress, and visitors... it's SUPER easy to forget that we're a couple. a gift for the parents to remind them that they're not JUST parents might help them along. this could be giving a close friend advice, a relationship book to read together, a giftcard to a restaurant, coffee shop, or other venue... just to give them some time to themselves. i cannot stress how important it is for the parents to have that time. this should also come with a "you have to take some time for yourself to be a good parent" talk. i feel so guilty for even missing one visit... even though i know it's impossible to be there all the time.
• offer to watch their kids, or feed their pets. these services can seriously drain the pocketbook. any help you can offer would probably be greatly appreciated by them. the older siblings will probably be allowed limited visits, depending on the nicu, but overall, it is hard to keep a child in the nicu or nicu waiting room for extended time periods, or on every visit.
  
• rides to and from the hospital. if you're going that way, or need to run errands in the vicinity, offer to pick up the parent(s) and drop them off for a visit. if you have the time to stay, that is even better. which leads me to my next point...
  

• please act like we have a baby. believe me when i say, i know how you feel. i would have been clueless and reacted the same way a few months ago. but having a sick child, is still having a child. i did feel a little weird when people would tell me "congratulations!" and i had my kid 13 weeks early! but it was better to hear that than nothing. so be sensitive to how your friends are feeling and remember they are parents! (i think this is especially pertinent to first time parents.)
• ask about the baby. i think more people ask about term babies than preemies in some situations. even if i don't want to talk about it, it shows that you're concerned. ask to see pictures, but be aware of what the baby will probably look like. if you're reading this you are no doubt wise, but you have internet (and great taste in blogs.)....
• send congrats cards, flowers, etc.
  
• do your research if you can. (can anyone say "GOOGLE"?) coming into a conversation with the parents and knowing just the littlest bit of information will be a help to them. especially if these are close friends. i feel particularly aggravated when some of my family doesn't have a clue what i'm talking about.. whether it be tests, results, equipment, or just everyday nicu terms, like "de-sat". this is probably because a parent with a child in the hospital is telling the same news about 1000 times! if you're invested in these people and the child, learn a little bit about the situation. it will really mean a lot to the parents. i have a link to terms on the sidebar of this blog. here's another link as a start: about the nicu
• throw a shower. be sure to talk to the mom about when she will feel comfortable with this. some mommies want to have it early to feel prepared and more in control. (i sure did!) some will feel very sad not being pregnant at their shower, and also not having a baby with them. some people also have concerns with germs and having a "sip and see" with a preemie. (i wouldn't have minded on those grounds, i was just wanting to get more prepared for her homecoming- 2.5 months away!)
• don't downplay the preemie's health concerns. always comparing their child to others is a bad idea. saying "they'll be fine" is a bad idea. it always cracked me up when i was pregnant, with a very high risk pregnancy (we knew she had growth restriction and might have to have a c/s as early as 25weeks), some really sweet ladies would always ask me "can you feel her kick? well, if you can feel her kicking she'll be just fine!". :) i appreciated their positive attitude, but it really had nothing to do with kicks.. and a preemie might not be "just fine". it is a very real possibility that they could have huge side effects for years to come, or for the rest of their lives. just lend an ear and give support.
• offer to update friends and family. this is especially important at the beginning and the end. while we were in the hospital, right after and immediately prior to my c/s the last thing i wanted to do was have to call a list of people. talking to a few family members was really helpful, and they disbursed the information. (my mom was actually updating my facebook after i got to the point that i no longer could/wanted to. it was really uplifting to get on later, after i was ready, and be able to read everyone's well wishes.)
• offer your talents, or resources, whatever they are. be creative. can you take pictures? do you have a video camera and the family doesn't? are you a techie whiz? offer to build a blog, or post photos or videos. if the parents aren't already familiar with how to do those things, the last stress they need is to have to learn how to do them. clean their house, work on their car. whatever you can think of that will save them time/money they will appreciate. both of our parents came out and helped us with our house. (we had moved just a few weeks before i went into the hospital.) they cleaned, organized, and did some projects that we needed done. (painting, sewing, hanging curtains, installing a/c.) it was great!
• put together goody bags/care packages periodically for their long hours at the nicu. especially when the parents are staying at the hospital full time. if they live close by, this may only be at the beginning and toward the end of the time their baby is there. if not, then they could be "living out of a suitcase" for up to months. magazines, books, snacks, crossword puzzles, a portable dvd player (loaner maybe?), drinks etc. maybe a pillow or other personal items, depending on what the situation at the hospital is. (my husband slept on a pull out chair with only a hospital blanket for about a week. this was partially his fault because he never thought to bring a pillow/blanket from home.)
  

• pumping comes with it's own set of trials and needs. most nicu moms will be pumping. breastmilk is really important for preemies, and if other nicus are like ours, they pretty much didn't give me a choice... they just wheeled the pump in!
• if the mommy doesn't already have a pump. try to make sure she has her own. i know that some hospitals will allow you to rent theirs, but i have experienced no difference in the "hospital grade" and my medela pump in style. it is super convenient to just be able to take it with me in a handy backpack wherever i go! (i inherited mine for free- what a blessing it has been! but i would say it is definitely worth it to buy one if they have to.)
• parts. a close friend was SO thoughtful to bring me extra parts for my pump when i was in the hospital. i never would have thought to send my husband to get them, or even ask for them... but it was helpful and stress relieving to not have to wash and dry a single set between each pumping session! ( i have 5 sets now. i think everyone pumping full time needs at least that many. a set dirty in the sink, a backup set in the pumping bag, a set i plan to use in the bag, maybe a bottle or two with milk in them at the nicu, and a set or two in the cupboard clean.) if you've been reading for a while you know that i have size XL boobs. (it's a curse.) so i have to use an uncommon size in the "horns". i live on oahu, and there is very limited options for buying pumping parts. we ran around to every store on the island that sells the different parts, and buying horns here, connectors there, bottles at a different place. my parents were coming for a visit at that time and brought some of these with them. who needs the stress of hunting something down when they've got so many other things to worry about!?
• me want FOOOOOD! as a milk producing woman, i can understand why the cows eat so much. i am hungry, like eat a full meal hungry, almost 24 hours a day. and thirsty! a bag of healthy-ish snacks, and maybe a nice bph free water bottle would be a great thing to have.
• most nursing covers aren't wide or long enough to successfully cover a pumping mommy's goodies. if she's actually wanting to be covered she's going to need more than the average "nursing wrap". most covers are made to only cover baby's head, and one breast at a time. i got a handmade one from a lady at church for my shower. it's one of the only things i can use now and i am THRILLED to have it! (i sometimes pump in the car- yes it's hard- and like to be covered. or, if i'm in at someones house in a room and am afraid someone might walk in.) i don't use it often, but when i need it i am SO glad to have it! to see if the wrap will fit, cup your breasts from underneath and hold them up...add about 3 inches from that to accommodate the horns, and connecting apparatus. adjust for the mommy's breast size. bigger means she'll need more length.
• breatmilk bags. i go through these things almost like i go through water! and they get expensive! for full time pumpers i would recommend lansinoh bags. they're cheaper, and freeze flat. but the measurement is completely off, and they don't stand on their own. generally lower quality. for periodic pumpers who also get to nurse, i would recommend the medela. you can pump directly into them, the measurements are accurate, and they stand on their own in the fridge. it is very important in my situation that the bags freeze flat though. a mommy who will be in the nicu for months to come is going to have LOTS of milk and need something that is a logical use of space.
• lansinoh cream. i rarely use it, but am glad to have it when i need it!
  
• pumping full time, and never having nursed, is totally different from nursing. i get my let downs when i hear beeping for goodness sakes! i think physiologically the body just responds differently to pumping than to breastfeeding. all the tips of "think about your baby".. etc.. that doesn't work if you've never had your baby to breast. and "smell something of theirs"... that doesn't work in the beginning either because baby doesn't smell like baby. (after about a month that worked a little better for me, when i started to identify what her smell was. thadd says it's "isolette smell". hehe..)
  

whew. i know that was a lot! and i feel like i'm forgetting some things as well. if you're a mommy, especially a preemie mommy, let me know your thoughts on these things. here's the link to the other mommy's blog that gave me the idea- taking on the world with our boy
click here for "what to get a nicu baby"