The NICU Post

Chris's hand and my hand on Evie, 10/16/11

You know that on this blog I’ve shared pretty much the whole story of the girls’ birth, while being as non-TMI as possible. If you would have told me three years ago that 1) I would be HAVING a twin birth experience to begin with, 2) it would be crazy scary, and 3) I would be sharing the story on a public blog, I would have laughed you right out of town. After all, whenever I’d flip through the channels and land on A Baby Story, I couldn’t get rid of that thing fast enough! So the thought of me sharing a birth story would have been utterly preposterous. Plus, I did nearly pass out having some blood drawn at the doctor’s office just this week. It was embarrassing. I'm one queasy girl. But here we are. I’ve blogged about our story so far for many reasons:

• to provide encouragement and hope to any mamas out there who go through some kind of scary pregnancy situation. I figure God allows each of us to go through things for a reason, and a lot of times that involves being able to help others who eventually go through something similar. In order for what I went through to be maximally beneficial to someone else out there who might need to hear about it, I figure it’s good to share what I’ve been through rather than just keeping it all bottled up inside. We need each other!
• to get it all down before what little I remember of it is completely erased from my memory. Plus, if I’m going to write it all down, I may as well share it with others, since so many people have asked me so many questions about it all. 
• (most importantly) to give God the glory He deserves for bringing all three of us - OK, four, including Chris :) - through this whole thing, to where we are today. 

Kangaroo Care with Tamsie, 10/19/11

However, up to this point, I have failed to blog about our NICU experience. Tamsie and Evangelyn were in the NICU for eight weeks, and those were the eight most difficult weeks of my life - not at all because of the hospital or doctors or nurses, because all of them were exceptionally amazing. ALL of them. No, those were hard weeks because I had just been through 29 weeks and 4 days of a joyful but intense pregnancy, and then my babies were born. Just like that, all our excitement and joy came to a sudden, shocking and scary halt, to be replaced by a constant, gnawing temptation to give myself over to worry and fear, as well as to overwhelming feelings of discouragement (this was NOT my plan!), despair (would the babies be OK???) and loneliness (it felt like hardly anyone could relate to me, and my family was so far away!). Above all, I just had to be patient and wait to have my babies home with me... and being patient has never been easy for me!

I’m not going into all the details of their NICU stay, except to give you a glimpse of what I felt during the whole thing. If you ever have friends with babies in the NICU, maybe this will help you understand some of what they're going through emotionally.

- It was indeed a roller coaster ride - and I hate roller coasters! One day we’d have fabulous news, and the next day, one of the girls would have regressed a bit. And even a minuscule regression can feel enormous to a mom whose babies still aren’t home, just because it’s not forward progress. Plus, I really didn’t know what would happen from one moment to the next. I didn’t know how any of us would end up at the time. (Remember, I wasn't completely out of the woods yet myself!) I will say that the Lord was extremely gracious and merciful to the girls and to us, because their stay was relatively uneventful overall, compared to what it could have been. 

- I’ll also never forget how I felt when I’d go out in public and see happy parents with a sweet newborn baby and be happy for them... but also ache so very much inside not to have my sweet babies with me. I felt like I should have some babies to show for what all I went through, but they couldn’t be with me - and it was just an awful, hollow feeling. 

- I was also plagued with guilt, wondering what I could have done differently to keep things from ending up as they did. However, I was reassured over and over and OVER again that TTTS comes out of nowhere, and that I was extremely fortunate not to have had problems earlier on in the pregnancy. Most of all, I am just so thankful the girls survived TTTS!!!!

- I would feel guilty having too much fun while they were in the NICU, even though I know that was entirely unwarranted, from a logical standpoint. Like I remember feeling bad eating at one of my favorite restaurants with Chris while they were being fed through feeding tubes.

- One of the most helpful things anyone did for me the entire time came in the form of a text from my dear friend Jane, who has been a NICU mom a few times herself. When she texted me to ask me how I was doing one night, I texted back that I just wasn’t cut out for handling what I was going through very well. I can already tend to be a bit of a worry wart, and this was just altogether too much for me to handle. She texted back a reminder that God would give me the grace to handle it one day at a time, which reminded me of Jesus's words in Matthew 6:34: “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.” That single piece of wisdom helped me more than I can ever say, because I stopped trying to handle the whole thing as a unit and started looking to Christ to give me the grace to handle each day as it came. And He totally did. Of course. :)

So what I would like to share at this point is primarily for the sake of helping you know how to help friends with kids in the NICU, should any of your friends ever find themselves in that situation. I’ve been wondering whether I should share about this, and the more friends I have mentioned it to, the more encouraged I have been to go forward with it. Plus, with a couple of friends with babies recently in the NICU, all of this is fresh on my mind, and I just feel like I should share. However, I've had reservations, because it's such a sensitive topic, and what we found helpful may not be what someone else would prefer. Also, I am fully aware that so many people were trying to be as helpful as they knew how to be, and the last thing I would want to do is sound ungrateful or hurt their feelings. Even so, I think I should share this. Who knows whether God will use it to minister to someone else out there in a similar situation.

HELPFUL

• Receiving gifts of friendship, love and prayer. These were by FAR the greatest gifts we were given during our time in the NICU. For example, one of the things that meant the most to me was when a precious friend of mine who is also a nurse came and met the girls in the NICU and prayed over the girls' incubators with me. Also, my dear friend Jennifer, who is also a stay-at-home mom and lives in North Carolina, kept me sane through everything by talking on the phone with me several times a week while Chris was at work. Her friendship and concern for me helped get me through such a trying time. Also, I can't say enough about how God used those prayers from so many friends, acquaintances, and friends and acquaintances OF friends and acquaintances, and answered them so faithfully.
• Receiving gifts of restaurant giftcards. We were up at the NICU every night, which made finding the time to eat dinner a pretty tricky thing to do. We found ourselves picking up food to go all the time - which gets expensive after a while. Giftcards helped ease that burden.
• Being surrounded by the excitement and joy of our family and friends, despite the unique circumstances. There was something really healing about being around people with a positive outlook who expressed pure happiness at the birth of our daughters and who didn’t let the scariness of the situation trump the joy of welcoming new life into the world. When people would tell me they were following our pictures and updates on Facebook, or when people seemed genuinely happy for us, that just meant the world to us.
• Hearing encouraging stories of families in similar situations. I particularly enjoyed hearing from people who were preemies themselves, just because I didn’t know anything much about preemies until all of this happened.
• Feeling like we were loved and not forgotten. We had to miss church during the whole NICU stay, due to being up at the hospital so late the night before, and it meant so much to us to hear from friends who missed us and were praying for us. It was good to know we weren't forgotten, even though we had to pull out of virtually every outside activity in our lives.
• Having us over for dinner. AMAZING. It was so good not to have to worry about dinner, and also so good to get to hang out with friends and feel semi-normal.
• Having friends who would just show up and ask how to help - then get busy helping. I mean they called first, of course, but then just came over and got to work! :) This was wonderful once the twins came home and we were completely overwhelmed, living in a city so far from family.

NOT AS HELPFUL

• Frozen meals. We needed all the freezer space we could get to store expressed milk. We were already having to throw out random foods we didn’t eat much of, just to make way for milk, and it was hard to keep finding room for everything as it was. This is why giftcards turned out to be so amazing. **EDIT: To clarify, frozen meals early on were GREAT! :) Once the girls came home, though, we had people offering to bring us frozen meals, but we told them there was just no room in the freezer. 
• Meals delivered in dishes that need to be returned. I think I still have some of these dishes in our house in Louisville to this day, because it can be so hard getting them back to their owners. I know this sounds odd, but seriously, with baby twins you just don't get out nearly as much.
• Giving us too much space. Chris and I were at a place where we needed to feel like we had a family away from family. However, I think some people were scared of getting in our way, so they kept their distance - but what we really needed was love and support. We needed to know we weren't alone in all of this, but we didn't always get that from people.
• Telling us horror stories. I guess a lot of people thought that since our girls were doing OK, it was alright to tell us about babies in similar situations who didn't do so well. Seriously? Just because my babies were stable right at that moment, everything could change in an instant. And please don’t be so shocked that my babies are doing well, because that makes me wonder why it’s so shocking and if things are about to take a turn for the worse. I would leave the hospital each night (for the most part) feeling empowered and hopeful and optimistic that everything would be fine, because that is how our doctors and nurses encouraged us to feel in our particular situation. Then I'd talk to people who had really no idea about our situation who would share horror stories with me, and all of a sudden I'd be given over to fear and worry until I went back to the hospital again. Not helpful.
• Making empty promises. Don’t tell us you’ll do something really sweet for us during this time and then not follow through. 
• The following types of comments:
• “At least you’re getting plenty of rest right now and not being woken up all night long!” Trust me, I would have given anything to trade in sleep for having my sweet girls home with me!
• “Well, they’re where they need to be.” Duh.
• “They weren’t supposed to be born yet.” Duh. Plus, this comment tended to trigger those irrational feelings of guilt over the fact that they had to come so soon. I would much rather hear people express thankfulness that the girls are OK!
• “How scary!!” Really? Thanks for reminding me.
• “Let me know if you need anything.” We heard this a lot once the girls were home. I know this one was well-intentioned, but please don’t tell me to tell you if I need anything. Of course I need a lot of help right now, but I’m probably going to feel awkward calling you up and asking for it. Just volunteer!
• “Do you think you’ll ever have any more kids?” Do I even need to comment on this one?
• Being upset if you haven’t heard from me lately. Umm, once again, seriously? I just had baby twins who were 1 lb 15 oz and 2 lbs 14 oz each, and now they’re in the NICU. I’m more scared than I’ve ever been in my life. My mind is everywhere and nowhere at once these days, so please extend some grace to me until things settle down a bit in my life.
• Acting like a C-section is the worst thing ever. Please.

I hope this whole post has been helpful or will be helpful to someone at some point.