tag:blogger.com,1999:blog-3085597284217459353.post5909688774471244174..comments2023-05-26T07:20:12.377-04:00Comments on Our Little Miracle, Charlotte Amalie: For What It Is WorthAmanda Khttp://www.blogger.com/profile/05585402236984731784noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-3085597284217459353.post-62246149358873374842011-02-18T20:54:43.357-05:002011-02-18T20:54:43.357-05:00When I'm having an off day, sometimes when som...When I'm having an off day, sometimes when someone tells me about a preemie who's "just fine" I want to list all the preemies I know that died. So, there's a "what not to say" for the parents of preemies themselves! (I've never actually said it, except maybe once to my Mom.)Andreahttps://www.blogger.com/profile/17692424083977328727noreply@blogger.comtag:blogger.com,1999:blog-3085597284217459353.post-29658542718312278212011-02-16T18:36:47.214-05:002011-02-16T18:36:47.214-05:00This was so perfect! You hit every point. My fav...This was so perfect! You hit every point. My favorite is the one about someone who knows someone whose cousin had a baby early and now they are just great. Being in the trenches right now of life with preemie in the NICU I am so sick of hearing that!!!!! Thanks for this, you made me smile!Paigehttps://www.blogger.com/profile/16034954205316296981noreply@blogger.comtag:blogger.com,1999:blog-3085597284217459353.post-75849459943414157962011-02-14T17:00:39.270-05:002011-02-14T17:00:39.270-05:00Let's see, some of the things I didn't lik...Let's see, some of the things I didn't like were the hospital staff calling me "mom" and my husband "dad." It drove me CRAZY!!! I figure if your kid is in the NICU for 5 months then staff should make an effort to learn names. After all, I am my KID'S mom not yours!!! Looking back on it now I should have said something. Ah well :).<br />I also didn't like the my horror story can top yours. Someone had the nerve to do that to me the day my kid was getting CPR!! Her daughter was perfectly healthy and running around. I was so mad at her! Grrr... :)<br />The best things? My friends were WONDERFUL. I think when people just step in, work out a schedule of care, and carry it out it is the best. No questions asked. Start with the food. Always the most important in my book. My dear friend kicked us out of our kitchen and proceeded to make us the best quesidillas we have ever had before or since. <br />I agree that getting the kid home is a whole different journey too. The milestone thing? Oh yeah, I have been there too! :) My kiddo didn't meet any of them on time. I don't like milestones or percentiles.Amy, John, Sam, and Frankhttps://www.blogger.com/profile/09082023623444732116noreply@blogger.comtag:blogger.com,1999:blog-3085597284217459353.post-41330324611648490172011-02-14T00:33:57.794-05:002011-02-14T00:33:57.794-05:00When CA was first born, I didn't know if I sho...When CA was first born, I didn't know if I should always ask about how she (and the rest of you) were doing, or if I should leave it alone and give you a break from constantly giving updates. But at the same time, I didn't want to ignore the situation and pretend like it wasn't happening, because it obviously was and it was a large part of your life. You do an amazing job keeping the blog updated, so I always try to read it and stay updated myself. That way, I don't have to always ask you, or I can ask more specific questions. So thank you, thank you for investing so much time into this blog. It's a great help for me and for so many other people. I hope it's been a good therapeutic outlet for you, too.Amandahttps://www.blogger.com/profile/11855440727938477173noreply@blogger.comtag:blogger.com,1999:blog-3085597284217459353.post-88525505967204794072011-02-13T00:48:32.137-05:002011-02-13T00:48:32.137-05:00I forgot the most important one-- shown in researc...I forgot the most important one-- shown in research even-- Dad's have a harder time and are more likely to suffer from PTSD after the NICU stay. They hold everything together. In our case, he did most of the phone call fielding, updating, talking to doctors etc... Fathers are more likely to try to go back to work etc... It is hard on them. Check in on them, take them out for a beer, meet them in the hospital coffee shop. Listen to them, let them talk about it.Katyhttps://www.blogger.com/profile/01204518035543132517noreply@blogger.comtag:blogger.com,1999:blog-3085597284217459353.post-66147785670484140442011-02-13T00:43:33.117-05:002011-02-13T00:43:33.117-05:00The things that meant the most to me were acknowle...The things that meant the most to me were acknowledging my older son and how hard things were for him. Also sending him special things, especially things he could do with me. I was the person that he needed the most but I didn't have the energy to come up with ideas and I was pumping all the time so it was so nice when a new lego set or coloring stuff arrived-- stuff that felt almost zen for me to do but were all about him. <br /><br />I loved getting a pink baby card with just a little, thinking of you, congratulations, let me know how/ when I can help message written inside.<br /><br />I couldn't have lived without my flannel bathrobe that I had for kangaroo care in the NICU. It made it feel less medical and more cozy for me. I recommend that to any NICU mom!<br /><br />The hardest comments were the ones that were trying to be funny... nothing about this was funny... The worst was, You could have just hired a night nurse if you wanted to sleep through the night, it would have been cheaper than the hospital you know!<br /><br />Just because we are home does not mean everything is fine-- it really isn't. We still need help with our son. We still need to be able to vent. We are still exhausted. We are still in shock. In some ways our emotions are more raw a year out then they were when we were in the NICU. Please don't point out how it "could be worse" or say everything is fine now.<br /><br />Lastly, be aware of the family's religious beliefs. I loved when people prayed for me because they were sending positive energy for my baby into the universe but I wanted to scream when I was told "God won't give you more than you can handle" or "God has a purpose for this child" or "It is by the grace of God that she is alive and thriving" or "God chose you to be this child's mother". All of those things make ME feel like God is vengeful because no God that I believe in would put a child or a mother through this hell. I know some people find comfort in that so all I'm saying is know your audience :)Katyhttps://www.blogger.com/profile/01204518035543132517noreply@blogger.comtag:blogger.com,1999:blog-3085597284217459353.post-70838397760997623682011-02-12T19:25:38.674-05:002011-02-12T19:25:38.674-05:00amanda,
as i was thinking about this, i thought ho...amanda,<br />as i was thinking about this, i thought how any new (dare i say uncomfortable for some) situation (be it preemies to illness to even death)is often hard to address, so i think your post is great and so applicable to so many in so many ways. thanks for the insight and suggestions. :) as always, you are the best!jami v.https://www.blogger.com/profile/07312950633716123483noreply@blogger.comtag:blogger.com,1999:blog-3085597284217459353.post-52107143340401493792011-02-11T10:51:23.280-05:002011-02-11T10:51:23.280-05:00I love this post too. Here's a couple things I...I love this post too. Here's a couple things I could add:<br />DO offer support for the older sibling, if there is one. We are forever grateful for the friends and family who pitched in and helped take care of our Lucy while Daphne was very sick. There were offers of playdates, sleepovers, and just some fun company while we, our parents, were too exhausted, sad, terrified, to entertain a 3-year-old.<br />DON'T dismiss your friend and he/she says that the baby will not catch up by two. Just because some preemies do, it doesn't mean that theirs will. They know their baby and his or her circumstances best.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3085597284217459353.post-65433236742429941432011-02-11T08:24:50.836-05:002011-02-11T08:24:50.836-05:00That's a great post. When our LO was born, we...That's a great post. When our LO was born, we didn't hear from a lot of people- even close family members. I think they didn't know what to say. It hurt, it still does sometimes but I think they did not know how to handle it. I found myself protecting them as well- not sharing the difficult pictures: on the vent, swollen after surgery, the scars. Thank you- I have really had some self-reflection from this post.tarahttps://www.blogger.com/profile/17760344279062392380noreply@blogger.com