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  • Renee Burns

June, 2020- NICU follow-ups, feeds, feelings, and a day in the life

Updated: Jan 28, 2021

Happy Wednesday- it appears our updates have shifted to more of a mid-week (or whenever we have energy to type) schedule! We are enjoying some unseasonably warm weather this week in Duluth, and are learning how to dress babies when it's 85 out, and also there are frost warnings at night (yes- a few nights ago there was a frost warning for us!). We've had a busy last week- the following is a run-down of our adventures: We had appointments in the cities on Thurs and Friday of last week, and the girls got to spend their first night in a hotel! It was eerie staying in a large hotel/convention center with probably 5 other people in the whole place. The room was without the normal amenities- cups, pen, notepad, information booklet- in order to help decrease stuff that would need to be sanitized. Non-the-less, we filled the place up with 2 cribs, a play mat, breast pump, nebulizing machine, bottles, bottle cleaning bins, measuring spoons and cups for formula, meds, and a cooler for transporting frozen milk to mix with fresh. Let's just say long gone are the days when Zach and I would pull up to any motel/hotel on the side of the road and walk in with only our wallets and be able to crash out...this was the first time we needed the luggage cart for a 12 hour hotel stay! The girls also got to see their aunt and uncle who live in the twin cities this past week. They brought dinner for us to the hotel, and we were able to sit outside and have a nice "social distance" meal. The girls have seen so few faces due to coming home during COVID that it was fun to watch them check out their aunt and uncle with excitement and curiosity. We spent the weekend hanging with the Duluth grandparents before they took off on a road trip to Washington via Colorado. Due to COVID, and our frequent visits to medical settings, we have been VERY careful about being around the grandparents. This weekend we felt comfortable to let them hold their grand-babies for the first time in about 2 months. Not only was it heart-filling to see the girls get some snuggles from their grandparents, but it was the FIRST TIME in TWO months that someone other than myself or Zach has held the babies- lets just say that we didn't really know what to do with ourselves, as we still inhaled our food and jumped up ready to take on the next task. It was difficult to allow ourselves to sit and attempt to enjoy a moment without a child in our arms. We also had our first official "social distancing" hang-out with friends to meet their new baby. It was strange acknowledging that they were the first people we had "hung out" with besides family since being discharged from the hospital (minus our NICU friends- but they're like family at this point- and they're also as quarantined as we've been). We sat outside on their deck, shared some beverages- then returned home for the nightly feeding routine. We've decided to spend the remainder of our week this week out at the cabin. The girls got a new tent, and we're excited to continue increasing time spent outdoors with them. They're turning into quite the road-warriors (which we're obviously happy about as travel is a big part of our family values!) So- besides the play-by-play of our family adventures over the past week, the following are the cliff notes of what we learned after our NICU follow-up appointments: Both girls had echocardiograms that showed that they still DO have little holes in their hearts. As previously mentioned, this is not an uncommon diagnosis in preemies, however since they are not closed yet we will be following up with a cardiologist in 4 months. Eloise had a pelvic ultrasound to follow-up on cysts that were identified on her uterus when we were in the hospital. We got great news they were all gone!! Vivian had speech and physical therapy- poor girl was worked by the end of the day! She got rave reviews by both of her providers regarding her range of motion and her "sucking and swallowing" muscles. Their doctor talked to us about the importance of the 4 month (adjusted) NICU check-up. He explained that this is the time they will start to see developmental delays, if any. His words, and I quote, were "The lights are definitely on in there for your girls..." and that at this point he saw no major concerns for any developmental delays. He called Eloise "strong and engaged" and Vivian "wirey and a bit stubborn"...we laughed and said that he could have been describing either one of their parents. The main focus for him is their weight gain, as they are barley on the curve (adjusted). And there you have it. So here I am, attached to my hospital-grade breast pump as I type this. The girls need to be upping their fortified milk intake by 20ml/feed. They are still needing to eat every 3 hrs, or 8x's/day. Each feed needs to be fortified with 26 cal. formula to breast milk at 90 to 100 ml's per feed. We have been going through 7 cubic feet of frozen milk- labeled with date and time of production. It's a trip to be defrosting milk labeled from 12-12-2019 @ 2:15 am- I'm like...whelp, good to know what I was doing then! It needed to be labeled like that because when they started taking my milk in the hospital we needed to deliver fresh milk daily that needed to be date/time stamped. Anyway, my little ladies have been rejecting the frozen milk, so I am still pumping- going on 7 months of pumping every 5-6 hours (at least)..and then feeding my girls 8x's/day. We're doing this because in order for the girls to take any of the frozen milk, we need to cut it with fresh milk. To say it's a full time job just to feed them is an understatement- This is what a "feed" looks like currently: 8:30pm- dammit we need fresh milk, I'll pump before the 9 pm feed 8:45- start to defrost some of the frozen milk to get it to the temp of the fresh milk 8:55- stop pumping, mix frozen and fresh milk, store the rest of the fresh milk 9:00- put together bottle parts, measure and mix formula to milk mixture 9:05- wake up a baby and change a diaper 9:10- PRAY that they will take THIS bottle THIS time without screaming, rejecting, arching, refluxing, etc... 9:30 (if all goes well)- Burp, snuggle, and sit with the baby to let their stomachs settle 9:45- attempt to swaddle and lay a baby down 10:00pm- TAKE A BIG SIGH of relief, and give yourself a pat on the back because it ONLY took 1 hour to feed a baby. 10:01- look at the clock and say FUCK I have to do this again in 2 hours! 10:15- hand wash the bottles for the next round at 12 am. **and this is just for 1 girl, so when you're doing them back to back, it's literally all you do in a day!** Non-the-less, we're here, we're moving from surviving to thriving, and learning how to give each other breaks, take care of ourselves, get work done, take care of 2 animals, and do the dishes. As we continue on this adventure as a Burns party of four I CAN NOT wait to look back at these days and say "man that was easy when they were little"....hahaha, but until then, we'll keep the updates coming- and if anyones got any tips on how to get preemies to grow faster, we'll take 'em!! ;-) Have a good night, and remember, if you're up in the middle of the night, there's a good chance we are too!! With love and gratitude- XOXO-



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