life in the NICU

IMG_5404.JPG The NICU breaks my heart. Seeing my girls in their incubators with their nasal gastric (NG) tubes and undergoing phototherapy for their jaundice makes me sad. My only saving grace is knowing that they’re on the upswing and doing better everyday. Holding, feeding, and talking with them is comforting. Watching them calm and soothe to our voices, back rubs, and holding their hands makes me feel like I’m doing something to help make them more comfortable. I’m (finally) starting to produce milk so contributing there also helps a lot. Right now they’re on donor breast milk so while I’m grateful for that, I’m looking forward to being able to feed my girls myself.

Everyday is different. It has it’s own victories and struggles. Our girls were progressing and doing well, headed home until the bilirubin in their blood increased. Looking back, I can see the yellowing in their skin and the whites of their eyes but I just thought that their skin had a yellow undertone & that their yellowing of the whites of their eyes was normal and would change over the course of time.

With Lo & Rhy being premature there’s so much that would develop & mature as they grew. Their livers being one of them. All babies are born with a level of bilirubin but preemies are more susceptible to jaundice due to the immaturity of their livers. I didn’t think jaundice was that big of a deal….. Until one of my girls had a level so high that could have damaged her brain. Fortunately, when we transferred units, her doctor in the new unit caught it soon enough and was proactive enough to start intensive phototherapy to bring her levels down quickly. And, thank God it worked. You have no idea the terror that washed over my body when the doctor updated me on their condition. For her to say that she’s “very concerned” terrified me. Although both girls have jaundice, one’s case was a lot more severe than the others. So, it was a matter of making sure who was who and whose levels were what and what therapy would be used for which kid. I’m already learning that with twins, it’s important to make sure the nurses and doctors know names and who is who because things can get really tricky, really fast.

IMG_5400.JPG What broke my heart the most was while they’re undergoing their phototherapy, they stay under the lights all day and only come out for feedings. (Their diapers can be changed in their incubator.) This was tough for us because we’d hold them for the duration of the majority of our visits, sometimes only putting them back to sleep. Not being allowed to do that hurt, especially when they were upset. We’d just talk to them and rub backs and hold hands through the little doors of the incubator. Tough part is when you stopped, they’d cry. So, we just stood there consoling them for however long it took.

IMG_5402.JPG Now, holding them for hours on end may seem like we’re headed down a path leading to disaster but NICU life is very different from the reality of having them home. In NICU, they have a nurse who is also responsible for 2, maybe 3 other babies. Most were sicker than our girls but recently our girls were more sick than the the other 2 babies their nurse was caring for. While I (obviously) love, respect, and will forever appreciate the NICU & their staff (they’re uhhhhhhh-MAZING!!!!!!), the reality of the situation is that they can’t hold these babies all the time. Due to prematurity, most need to be as still as possible, in their heated incubators to help them control their body temps, and conserve their energy. They shouldn’t be handled much. Also, there’s too much to do; there’s no time to sit and cuddle babes all day. Last, can you imagine the flack they’d get from parents about why this baby was held this long and that baby that long but my baby only this amount of time?! Trust me, as a teacher, it’s not a good idea!! All that to say, unless we’re holding them, they’re in their beds all day save being fed or bathed. And, that I’m not a fan of. I believe they need physical touch and cuddling, we all need the benefits of skin to skin, and a little body heat never hurt anyone! So, all day cuddles for the win!

We could tell today that they are feeling much, much better and that made this mama heart so happy! The high levels of bilirubin caused the girls to be very sleepy and lethargic and the lights caused them to dehydrate and lose weight. But, today, after a couple of days under lights, they are back to their alert and very feisty selves. It’s so funny to watch them fight things they don’t like and hold on to what they do! Their doctor has increased their feeds and finishing every other bottle or so which is waaaaay better than yesterday and especially the day before. They’d be so tired and drained that they’d sleep through most feedings and have to get the remainder of their milk tubed. But today!!!!!!!! my girls are eating like champs so I’m hoping they put on a few grams everyday. Consistent, daily increases in weight (even as slight as grams) is one of the requirements to get us out the door.

I’m thankful that their last day of phototherapy was today and they should be coming off lights tomorrow. I’m looking forward to meeting with the doctor tomorrow and praying for an excellent report. I’m looking forward to my girls being in NICU to just “feed and grow” like before. 12-15 hour days at the NICU aren’t fun at all…. I’m ready for all of us to be in our own beds and free from pokes and prods!!

IMG_5341.JPG My girls are definitely tough… But, more than that, their creator has his eye on them and has already written them into such a beautiful story. A story that will bring God so much glory and praise. This NICU life is scary for sure, but we are truly learning to trust God in a completely different arena. And, for that I’m truly grateful for this experience. It’s difficult to say you trust God with your entire life but have only had only Him to lean on in a couple of areas. The ability to trust God in every of your life means that you’ve had to learn to trust Him in every area of your life…… Which means you’ve been tested in all things. “No matter what” is easy when things are going well, ya know?

The mom of a NICU “alum” told us that there is life after the NICU……. I’m so ready to start that leg of this journey!!!

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Comments

  1. May the Lord meet you all right at your needs. So beautiful!

  2. You are A-MAYESING! I’m reading and checking online everyday for updates on you, T, Rhyann a nd Logann! I can only imagine the many emotions you feel, but know I love you guys soooooo much and my heart and prayers are there with you! I hope to meet the girls soon!

  3. Reading your words made me remember those difficult days again – the ones where you just want to cry and, I dunno, grab your babies and run (to where? where would we go?!). But what I will say, as someone who’s been “on the outside” now for a long time (my twins are 21 months corrected), the pain of days like this lessens eventually. Right now it’s like a scale and it’s weighted only on one side, with all the scary, painful, “what-if” times that you have in the NICU, feeling like your babies aren’t being held enough, and thinking you’re the worst mom ever for having to leave them even for a minute. But once you come home, you start to add amazing memories to the other side of the scale, the happy, hopeful, “OMG this is the best thing ever” side. And it balances out. You won’t forget those scary days, but they won’t be the main thoughts in your head anymore. Trust me, you can do this (there are so, so many of us who have been in your shoes and know that it’s possible.)

  4. Stay encouraged! Praying that the girls continue to improve and that you can all go home soon!

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