Our Twin NICU Journey - Days of a Wife

Oh man have I been wanting to write this post for awhile, but I honestly have been putting it off for two reasons 1. the emotions of looking back over everything and 2. having the time to sit down and write it all because it’s a lot. However, I knew I needed to document it all soon because time flies and so do the details!

If you didn’t already know before this post, our twin boys were born at 30 weeks and 4 days. You can read their birth story, along with why they came early in this post here.

How Long were the boys in the NICU?

We spent a lot of time in the NICU. Arrow was in the NICU for 36 days and Rhodes was in there for 53. I only ever missed one day of going to see them, and that was when I got mastitis and had a fever, so I wouldn’t have been able to pass the Covid fever check at the start of the hospital! When both boys were in the NICU I would go twice a day, once in the afternoon and once in the evening. In the afternoon I would only stay for around an hour and a half to two, but in the evening we would often stay 3-5 hours. Todd was often able to come for both, but depending on work, sometimes just came to one or the other. Once Arrow was home, I only went once a day when Todd would be home to watch Arrow. Since our boys were in the NICU during the pandemic, the rule was one parent per child, so we luckily were both able to go at the same time when they were both in there, unlike so many other parents. We felt very lucky. Because of this we both got to be there for many of their firsts, such as their first baths.

Also it was great because every morning we could expect a google duo call from the doctor when they were doing their rounds. I loved getting to see their faces and get an update from the doctor. We also were able to call any time of the day to the pod to get an update from the nurses that were working. Also, they had this awesome program that was an app on our phone that nurses and doctors could send pictures and messages to. Often times I would wake up at 2 am to pump and would get a sweet picture of our boys from our NICU nurse and it reassured me that they were both okay.

What are Care Times?

We also tried to time our visits around their care times. If you are new to NICU world, care times are usually ever 3-4 hours when the baby gets taken “care” of. This means they do temp check, diaper change, feeding etc. We would participate in whatever care activities we could and then afterwards we would do skin to skin or hold them all bundled up. This allowed us to interact with them when they were awake and also feel like real parents taking care of our babies!

The Beginning Days:

After the boys were born via c-section they were whisked right away to the NICU after they did a few vital things in the OR. Todd was able to follow the boys up. I stayed in recovery and ended up finally getting to see the boys in the NICU around 7pm that evening (they were born around 2:45PM).

When I was finally able to see them I was still a bit woozy from the c-section, so I had to be in a wheel chair and my time was super short because I started to feel like I was going to be sick while I was in there. I was barely able to see either boy because I couldn’t stand and they had tubes blocking the majority of their tiny faces! I also wasn’t able to hold either one yet, but I was happy to at least be near them and get a glimpse!

The next day I was able to stick my hand in the side of their isolettes and visit with them more. I also finally was able to hold Arrow, which was a very special moment. One of the hardest parts of their births was the fact that I wasn’t able to hold or see them right away when they were born! Rhodes was so tiny however, I wouldn’t be able to hold him for a few more days because he was on a special protocol that kept him as still as possible for a few days to prevent brain bleeds. We also got to see both of our little boys without their tubes, because they were having to change them all out. At this point they were both on oxygen, an IV, and a feeding tube through the mouth.

We checked out of the hospital and finally after 72 hours I was able to hold Rhodes! He was so tiny and precious! Also, when we returned both our boys were under the blue light with sunglasses because they both had a slight case of jaundice, but thankfully that did not last long!

In the next week, Todd also was finally able to hold both of the boys as well.

So from this point the boys had to master a few things before they could go home. They had to grow, control their temperature out from an isolette, breathe without the help of oxygen, and eat their full feeds from a bottle.

Arrow quickly was able to come off of his temperature control probe which was when he was able to start wearing clothes! Rhodes was pretty good at breathing in the beginning, but Arrow gave us a scare because he would get worked up at care times (he hated his CPAP (the thing that gives them oxygen) so much that he would scream and scream and scream and blow off all his oxygen and then hold his breath and start to turn a bit blue. This is called apnea and is rather common for preemie babies in the NICU, but for us parents it was scary and stressful! Thankfully the quick solution is to stimulate them by flicking their foot or rubbing their back, and the longer solution was to give them caffeine through their IV which was actually super common to give babies (I would have never guessed this because everyone is worried about drinking caffeine while pregnant and breastfeeding). Thankfully once we had one stressful evening of him doing it 3-4 times, he didn’t ever do it again!

The boys were also quickly given a “room air” trial. Which was to see if they could breathe off of just the oxygen that was in the air and not need the help of the CPAP. I had received steroid shots before they were born in case they came early. Both boys did well in the beginning on their room air trial, but Rhodes did eventually have to go back on it.

Week by Week:

During week 32 (32 weeks gestational age), Arrow hit his original birth weight and went above 4lbs! Rhodes was quickly gaining and ended the week at 2lbs 9.5 ounces. This was a big week because we were moved to a new pod, Pod D, which was a pod for preemies and not really babies in intensive care. Arrow ate from a bottle for the first time and breastfeed for the first time this week as well! He really took to breastfeeding well, and thankfully we had wonderful lactation support in the NICU because they have a lactation consultant there specifically for NICU moms!

We also had an emotional evening this week because Todd was around someone suspected of COVID, because of this, we decided to not go for our evening visit and we also had to notify the hospital (in the rules we were given). Thankfully the next day the person’s test came back that he was negative and we were able to go see them that evening! We were both in tears over the thought of missing not only one visit but possibly 14 days worth! That was our only exposure scare while we were in the NICU thankfully!

Week 33, Arrow got his first bath. They taught us how to give them a bath using a swaddle, which we still love to do at home!

I also finally got to hold both my boys at the same time! Such a special moment! Also, this week Rhodes blood sugar finally stabilized, which was something they had been monitoring for awhile. He was on continuous feeds (literally getting fed 24/7), to help stabilize it, so thankfully they were able to back off and everything stayed good!

Rhodes also was able to get his temperature prob off and was able to wear clothes and be swaddled! We also put the boys in their first matching outfits, premie size of course! Rhodes attempted to try breastfeeding this week, but he just wasn’t ready! We also were able to get Arrow’s circumcision this week, which he did awesome with!

Week 34 Rhodes hit 3lbs and that seemed like such a milestone because he wasn’t so tiny anymore! Rhodes also got his first bath and ate a full bottle. Rhodes also was able to switch to an open crib! Arrow ate a whole bottle too and kept progressing on how much he ate! Also, we celebrated one whole month! Our awesome primary nurse helped me to get them next to each other to grab a one month picture and she also made them a sweet craft!

Week 35 had some highs and lows. Rhodes got circumcised which stressed his body out a bit and he had to go back on CPAP to help give his body some energy (he was desating a lot, or dropping his stats often). On the other hand, Arrow ate lots of his food and was able to get his feeding tube removed!

This meant that we were able to stay overnight with him to see if he passed the test of eating enough food in 24 hours and he did! SO he came home! Honestly this was so sudden! We went in for our nightly visit and the doctor said he would be able to come home in the next day or two, we mentioned that we wanted to room-in and they said how about tonight!? We are talking 9 o’clock at night people! So we went back home, packed up our stuff to spend the night and came back. I legit did not sleep a wink I was so nervous! Also I had no idea how noisy of a baby Arrow was while sleeping! I wanted to constantly check to make sure he was okay. So the next day we had to wait around awhile to be discharged (it was night time by the time we got home!), but finally after 36 days, Arrow got to come home from the NICU!

Week 36 we adjusted to Arrow at home while Rhodes was still in the NICU. Honestly, yes it was sad to leave Rhodes there, however it was a good break-in to parenthood. I honestly might have felt a bit overwhelmed bringing both home at the same time, and also we were doing it totally solo because of the pandemic!

Arrow adjusted well to home, we started breastfeeding more which was great, however he still ate faster from a bottle. Todd took the week off from work, so we were able to alternate who went and saw Rhodes at the NICU and who stayed at home with Arrow. This week Rhodes was able to come off of his CPAP and on to a cannula, which is what you traditionally think of when you think of someone on oxygen. This just supplied him with some extra oxygen. The docs started to bring up Rhodes possibly needing to come home on oxygen and that was a bit overwhelming to think of caring for not only twins, but also trying to carry around oxygen tanks!

Week 37, they started a steroid treatment for Rhodes’ lungs and it ended up doing the trick to take Rhodes off of his cannula! Also during this time Rhodes’ newborn screening test kept coming back funky. They came back saying that Rhodes possibly had Maple Syrup Disorder, a rare metabolic disorder. No one thought Rhodes had a metabolic disorder, so the test was sent again. However, when the sample made it to the lab it wasn’t any good. We were told that these tests come back with false positives all the time and that there are causes in the beginning of a preemies life that can cause them to be thrown off, so we tabled it for awhile and just now got bloodwork drawn again to check to make sure everything is clear, which we are hoping and thinking everything is!

Week 38, Rhodes came home after 53 days in the NICU! They watched to make sure he was eating well and doing good off of oxygen and he did! He only came home having to do his steroid treatment twice a day using a nebulizer! Such a praise! Rhodes left the NICU weighing 5lbs! His last night in the NICU was Halloween, which was also the twins 38 week “due date.”

We are so thankful or stay in the NICU was relatively a smooth and easy one! We know so many people have had it way harder, and we feel blessed to have such a good medical team helping our boys!

How much does the NICU cost?

EHHHH it’s expensive! It’s often referred to as the most expensive babysitter ever, lol. Our Insurance was going to cover the majority of it, but still left us with a bit out of pocket, however thankfully medicaid can be applied for and used if you meet certain qualifications as a preemie and both our boys did! (One of them being that their stay was over 30 days long).

Best part about the NICU?

Being new parents, the NICU taught me a lot. It gave me the confidence to care for a very small baby! We learned how to diaper, dress, pace bottle feed, and breastfeed all while being connected to tubes.

Also we had some amazing nurses! Honestly the community there was fantastic and made the hours spent there not so bad! Our primary nurse was such a blessing and continues to be a good friend to our family today!

Advice for parents who have a baby or babies in the NICU?

Ask questions. Don’t be afraid of the beeping, but learn what the sounds mean. If the nurses aren’t running, don’t be afraid something is wrong. Advocate for your child, you know them best! If something seems off then say something! If you find a nurse you really like and trust, ask them to be your primary nurse (they will be assigned your baby every time they work). Don’t be afraid to skip a visit, watch some netflix and emotionally heal. The babies will be home sooner or later and you won’t have time to do that! Take advantage of the resources, especially the lactation consultant if you plan on breastfeeding, and snuggle your baby as much as you possibly can! They don’t want to snuggle like that for long!

Must have gear/products for the NICU?

Yes! A portable breast pump is great, I have loved the spectra S2. Also, this bra is fantastic to wear to the NICU because it’s both a pumping and nursing bra in one! Button up shirts are also a must for skin to skin. Also, check your hospitals policy, but you might be able to bring in swaddle blankets for your baby and their crib, as well as preemie clothes for them to wear. We also brought in a bottle we wanted to use, as well as a pillow to aid with breastfeeding!

What are the octopus dolls I see in the pictures with the boys?

The boys had quite a few accessories in their cribs! They both had scent dolls that I was given on day one to wear and put in there with them so that they could smell me. Also, the octopus dolls were given to them to hold on to (yes even preemies can hold on to stuff!) to help them not pull on their cords!

What was the hardest part emotionally about the NICU?

Oh man, there are a few things that come to mind. First, the expectations. I expected to hold my babies when they were born, I expected to dress them in clothes, I expected to breastfeed, I expected to be in a hospital room with my babies, I expected to take my babies home when I went home, etc. Having to grieve all of these expectations was a difficult part for sure. Sometimes if I dwell on these things I can still get sad about them, but I just have to remember how their story is unique and beautiful!

Secondly, it was hard to pump every three hours and wake up like I was supposed to have babies at home, but didn’t.

Third, the babies sometimes felt like they weren’t completely mine because I couldn’t make all their decisions. I mean I guess I could, but I wasn’t with them 24/7 deciding all the things the doctors and nurses were. It took me awhile when I got home to realize that I could make my own decisions about them because I was their mom!

Lastly, I had a hard time knowing they were alone laying in their crib and were only getting held a few hours a day. I worried that they wouldn’t know me as their mom or might wonder why their mom wasn’t with them! Todd helped me remember that when I wasn’t there to be watching over my boys, Jesus was. That picture in my mind helped easy the sadness.

Whew! That was a lot to cover and a ton of pictures! Good job if you made it this far! If you have any more questions feel free to ask in the comments below. If you were/are a NICU mama how long was your baby in the NICU?

P.S. I also was on a podcast where I talked all things twins and NICU life! Check it out here!

-Kasey

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