NICU Day Seventeen was Monday, November 24th (My sister’s birthday. Happy birthday, Aunt Sarah!! <3)
NICU Day Eighteen was Tuesday, November 25th
– Harper –
We woke up yesterday to a call from our night nurse, Crystal, saying that Harper decided to remove her own OG tube. She pulled it out, started to gag, dropped her heart rate, stopped breathing, her o2 sats dropped and she turned blue. This response is considered normal for preemies when they gag, but it was still a pretty traumatic episode for her. She had a few more episodes throughout the day during which she would brady down (drop her heart rate and do all of the above) for a few seconds. She brought herself back out of most of them, but she did need to be jostled to remind her to breathe a couple of times. This is scary when it happens, but it’s really not out of the ordinary. In fact, one of the criteria for babies leaving the NICU is to not do this for 5 days. One of her biggest episodes yesterday was during her cares when we decided to remove her OG tube all together in favor of an NG tube (in her nose instead of her mouth) and that was pretty rough on her. She turned blue pretty fast, but we were able to get her suctioned and she came back with no problem. Harper had two BIG improvements yesterday that we were SO excited about. First, she was weaned off of CPAP and onto high-flow, which is another step closer to breathing 100% on her own. Less pressure going into her nose means less air in her belly, which means better feeding. Today, Harper received feedings of around 17ml every 3 hours with NO residuals! She had two really big poops too! This kid is kicking ass with her feedings today, we are so excited. We knew that CPAP was making this more difficult for her because she was filling up with air and we really suspected that we would see an improvement when she was weaned off of it. Thankfully, we were right! Her weight today was 3 pounds, 11 ounces…. officially ONE POUND up from her birth weight! This kid is just growing chins like crazy. We are so proud of her. Ashley go to do about 3 hours of kangaroo (skin to skin) care today and she just does so well with it, her heart rate, temp and O2 sats are perfection. We are looking at weaning her down more on her respiratory support ASAP as long as she continues to do well. She’s catching up to her brother, slowly but surely!
Our nurses have craft time and leave these little gifts for us ❤
Hanging onto Grandpa Mikey’s finger.
Just. So. Many. Chins.
She was sleeping like this! Mouth wide open… crazy kid.
– Elliott –
Mr. Elliott has had a HUGE couple of days, it’s incredible. Yesterday, he was moved to the continuing care nursery where he will be focusing on learning how to eat from a bottle and nurse. Feeding is our big hurdle now. Ideally, we wanted to have then twins be exclusive nursers or at least only have breast milk, but that is not recommended for preemies. Because they aren’t getting the same nutrients that they would have been getting from the placenta for the last two weeks and another 6 weeks on top of that, they need a ton of calories really quickly to gain weight. Gaining weight and taking in calories is a huge undertaking for their underdeveloped bodies, so we fortify Ashley’s breast milk to have extra calories. Depending on what our pediatrician wants, we will have to supplement their diets for up to several months post discharge. This means they will probably only be able to nurse every other feeding, and the others will be pumped breast milk with special formula added for supplementation. Fortunately, our view on nursing isn’t “formula is BAD” as much as it’s “breast milk is GOOD” so as long as they are getting all those important nutrients and antibodies from Ashley’s milk we are all good in the hood. We are also not feeding them just formula or just breast milk. Every feeding is breast milk with a little extra goodies added in. Ashley is working on nursing, and he does very well for only being 34w4d adjusted. They don’t expect much of a latch from babies until about 35/36 weeks but Elliott roots and finds her nipple on his own very well. He has latched a few times and has gotten a few good swallows! Since I can’t nurse, I am in charge of bottle feeding. Speech therapy came in to observe me feeding him today, and it felt good to get an A+ on my preemie feeding technique! We were expecting it to be just like feeding a normal baby, but there is a lot more to it. We hold him in the side lying position (like nursing) and tickle his cheeks and nose with the bottle to get him to root (also like nursing). Because preemies haven’t figured out the whole suck-swallow-breathe thing yet, they need breaks after each couple of swallows to avoid them choking and having a brady episode (like Harper had) as a result. It sucks to take the bottle away when he has a good latch and is getting some food, but it’s better than having him choke! He has been taking anywhere from 10ml-17ml from the bottle at each feeding and the rest is then fed to him through his feeding tube as usual. Like I said before about the calories, we have to be careful with his feedings since they take so much energy out of him. By fortifying his milk, we are making sure that he’s not burning more calories by eating than he is taking in. Elliott’s other big achievement today was getting his first bath in a real tub! We gave him a swaddled bath and he absolutely loved it (though the pictures don’t make it look that way!) especially when we washed his hair. We are loving being able to dress him up in more clothes, he just looks so cute and fits right into those preemie clothes so well. Our friends Lisa and Kaitlyn were able to visit and hold him yesterday, Grandpa Mikey was able to hold him as well. Elliott weighs 4 pounds, 11 oz and is also exactly one pound up from his birth weight! He also has about 94 chins.
Elliott’s new room, that he is moving out of this evening. Our new one will be similar! My mom is cheesin’ around 🙂
My awesome friend Retha got the twins some really adorable stuffed animals from The Land of Nod, and Elliott’s alligator dwarfs him!
– Moms –
When we left they were about to move Elliott to yet another room, because our new unit has twin rooms. Both twins will have their own rooms, but there will be a sliding door between the two that we will keep open. This way we can actually take one of them into the other’s room and have them nap or be held together! Since the rooms are all usually occupied, we are moving into a room tonight and then we will move Harper in next door when she is ready to come over. (Should be within about a week if she keeps up the good work!) It is SO NICE having an actual room. We have a bed to sleep in, a fridge, a recliner, a TV, a desk for me to do my homework and even some family showers that we can use if we spend the night. We’ve been getting a lot of exercise walking back and forth between the two units all day for their cares, but we love having a home base where we can sit down for a minute. We’ve stayed later than usual the last couple of nights. It’s getting more and more intense every time we interact with the babies, they are so alert and have so much personality. It’s amazing to see them gain weight and become more responsive to our voices. We are still just totally in awe of our nurses and doctors… One of our doctors is a former customer of mine from the cigar store I used to work at, and he has been so supportive and sweet. He’s a friend of my mom’s as well (she worked at the cigar store for 6 years before I did) and we all got the chance to sit down and catch up about life and the babies last night before having a nice dinner with my mom and Mikey. Today, my sister in law Traci came to meet them for the first time and was able to hold Elliott, and then my Aunt Shellie and cousin Cassidy came to visit. It melted my butter when my Aunt Shellie got tearful looking down at little Harper. We are just surrounded by so much love, it’s overwhelming sometimes. ❤ My wonderful friend Lili flew in from Colorado today and we are meeting up with her tomorrow morning so she can meet them for the first time! Our friend Trisha (one of the three people actually present at our wedding lol) will be coming from New Mexico for Thanksgiving and will get to meet them on Thursday. Thanksgiving is going to be a challenge because we just can’t imagine leaving them alone on their firs Thanksgiving. Even though they won’t know or care, we will.
Ashley is still lactating like a mother (ha, see what I did there?) and we woke up to this unpleasant surprise after I apparently turned off her pumping alarm in my sleep and she slept through her pumping time by two hours. Whoopsies.
All in all, everything is going very well. The kids are not doing anything we wouldn’t expect from preemies, and everyone still agrees that they will not have ANY lasting physical or cognitive disabilities down the line. We just have to be patient with our little ones, and they are amazing us and making it worth it absolutely every day.
HUGE NEWS, by the way… We were sitting at lunch the other day and received a message from a woman in Portland who has a 3 month old daughter that was conceived using our same donor! The twins have a half sister! It was so exciting, we’ve all added one another on Facebook and we’re looking forward to keeping in touch. We think she looks like Elliott (or, Elliott looks like her haha) as they both have cleft chins, just like our donor. I know there are more babies out there that were conceived using the same donor, but we have yet to hear from any others. It was just really cool that she found us 🙂
Until next time,
Devan, Ashley, Elliott and Harper ❤