On Preemie Babies & Preemie Parents

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A lot of you have asked about this topic in passing, so I figured it was about time for a blogpost! The reality is, before having twins - I didn't know all the intricacies of the twin lingo and different types. So I definitely don't expect you to! And now that we have two 9 week premature babies, the same could be said of preemie lingo. The reality is, we have SO SO SO much to be thankful for. We had VERY healthy preemie babies - but there are still precautions to be taken. A lot of what you see on the blog is the happy moments, the milestones, and the joys of their first "public" outings; but what you don't see is the precautions and tons of effort in taking them "out." So a lot of you have asked about it, and I figured I'd post a few helpful tips to friends and family members of preemie babies.

Tip 1: Understand that there are a variety of different types of preemies

A preemature baby is considered any baby born before the 37th week of pregnancy. They are usually smaller in weight and height, and they occur in 8-10% of all pregnancies in the USA. But, also know there are differently categories of premature babies. For example, there is a difference in a baby that is 34 weeks premature and a baby that is 31 weeks, just as there is a difference in a baby that is 27 weeks premature. Also, every baby is an individual person so they may respond differently. For example, our girls were champs for their size and birth week (31 weeks). We really have a lot to be thankful for. But, when discussing prematurity with a mom of preemie/s, remember that your story of a distant friend who had a baby early at 38 weeks is a different situation. The graph beside this paragraph is from www.tommys.org - a great resource on preemie babies. I highly recommend it if you have a close friend or family member with preemies.

Tip 2: Staying in the NICU is difficult, give the parents grace.

There are no ifs, ands, or buts about it. Leaving your newborn baby behind is one of the most difficult things to do. And if the mom had any complications and was unable to see her baby/ies for any period of time, that is extremely difficult. Although the birth of a child is a celebration, sometimes the immediate afterwards can be a traumatic experience for parents of preemies. Prayers are oh so appreciated, but sometimes space is also needed. The Mister and I are extremely social people and one of the harder things about these babies' birth was that we couldn't share the girls with friends and family. Everyone wants those sweet memories of laying in a hospital bed whith your child/ren, happily sharing when family and friends visit. But, that isn't the birth experience that most parents of preemies get. Sometimes the kindest gift you can give these new parents are prayers/texts/words of encouragement and space. The day in and day out of spending weeks in hospital unable to take your child/ren home is extremely difficult; at the end of each day as I walked out of the hospital, once again without my babies, I was emotionally and physically spent. I had nothing left to give to anyone else. Parents of preemies in the NICU don't have time to maintain outside relationships while honing all their efforts onto caring for their child/ren; please do not be offended by this, but instead give them grace. I know I sure didn't have the stamina to entertain.

Tip 3: Allow the parents to offer for you to hold/touch their preemies.

Here's the hard part for me, I SO SO SO badly wanted family and friends to be able to hold our girls all of the time when they came home without having to make everyone "scrub in." I wanted to be able to take them out to coffee shops and meet my other new-mom friends. I wanted to be able to take them to church and pass them around. I wanted to take them to tailgates and toss them into the arms of our friends and not constantly be worried about RSV or other infections. But sadly, that is not the reality for moms of preemies. The truth is, even after the babies get past their "full-term" due date, some preemies are still premature. For example, our babies are still smaller than what they should be for their corrected age. Our girls are not on the charts yet with weight and height and they're three months old (6 weeks old corrected age). Felicity is still only 7 1/2 lbs. and Noel isn't much bigger. We're allowing friends and family members to hold them when we're in a controlled environment where people can wash their hands (& we've been doing that since we' brought them home from the hospital). But, if you see a tiny baby out in public or if one of your friends has a preemie baby, do NOT reach in and touch them without asking. Or even perhaps wait to see if the parents offer for you to hold them if you're in a public place. I absolutely HATE having to say no repeatedly to friends and family, but if I'm in a place that I feel is safe I definitely offer. Also, if you have a cold or are sick - or if you're even feeling like you may be fighting something off - as a way of caring for these babies (and for the sake of the sanity of their moms), please do not even come near them.

Tip 4: RSV is different for premature babies

RSV, respiratory syncytial (sin-SISH-uhl) virus, affects premature babies differently than it does full-term babies. This virus usually just causes a cold in the respiratory system for healthy babies, but in premature babies it can cause pneumonia, bronchitis, inflammation in the airways of the lungs and can even kill the baby (see this website fore more details). Here's the reality - every preemie mom dreads RSV season. I am thankful that we've not been put on house arrest like many preemies born around this season. BUT, our doctors have given us strong warnings of caution. No church nurseries, No childcare facilities, and be wary of having them around children. The girls are getting a preventative injection, Synagis, but it does not mean that they are free of risk. If you have a friend who has a preemie baby born during or around RSV season, know that it is a sense of anxiety. A cold is more than just a cold for the baby born prematurely. And again, depending on the week the baby was born, the risks differ. The earlier they were born, the greater the risks. So again - you might think the parents are being slightly - or entirely - over protective now that the babies are past their due date, but the parenting game they're playing is a whole different ball game than the one you play. Again, give them grace.

Tip 5: Grace. Grace. Grace. Grace. Grace.

I don't know if you're noticing a theme here, but if I were to put it bluntly - cut parents of preemies some slack. It is easy to get your feelings hurt by what appears to be an attempt to keep you at arms bay from their children. But give the parents grace. I know, personally, that it was really hard those first few weeks home to have to tell family members and friends "no" or "not yet." But just as our babies are growing physically, we as parents are growing in this journey as well. I really struggled telling out of state family members that if they wanted to visit they needed to get a hotel or that if they had small children they couldn't come until a certain date. It was hard, but necessary! And drawing those boundary lines still is hard, but its our job as parents. And those lines look different for everyone and should be made with the consultation of doctors, not the opinions of friends. I look forward to the day when I walk into church and can leave my girls in the nursery - really, I can't wait! But the reality is they're not ready. Again, remember that just because a baby is past their due date, it does not mean that they are now officially a "normal baby." It takes about 2-2 1/2 years for everything to eventually normalize.

Here's the honest truth and why I, and other moms of preemies, need your grace. I try really hard to be chill about it, but sometimes when we're out and about, I still have to fight the anxiety. I love it when folks come to the house and hold my girls, but when we're in a different environment, especially a public one, I still am hesitant. Instead of getting hurt feelings or making judgments that the parents are over protective, give the parents grace. They're doing the best they can. I assure you, the last few months of their lives have been turned upside down and as joyful as it is, they need your grace, I need your grace.

Over all, the two main ideas is GRACE & understanding. You never know what folks go through behind closed doors or what the background story it. If you have friends or family members with premature babies I highly recommend getting familiar with these two websites: Hand to Hold and Tommys. They have a lot of great resources and information on preemie babies and support for parents of preemies!

I hope this answers some of the questions you've been wondering, but if you have more - please feel free to ask! We're by no means offended. :) We know we're a bit of a freak show already.

Much love to you all!

Posted on November 15, 2012 and filed under Family, Preemies, Twinsies.