Friday, February 3, 2017

Our NICU Journey

I've been trying to write this post for the last three months. I wasn't even sure where to begin... that and the fact that my free time is pretty limited now that I have 3 month old twins running my life!

Our girls, Charlotte (Charley) and Madison (Maddy), were born on October 23rd -- you can read all about their birth story here -- which was 6 1/2 weeks early (my due date was December 8th). I knew throughout my pregnancy that there was a high probability they would come early, as most twins do. My goal was to make it to 37 weeks and even had a C-Section scheduled for that day. However, the girls clearly had other plans and arrived at 33.4 weeks gestational.

As soon as my water broke, I knew our girls would not be coming home with us anytime soon. I tried not to think about that part because, you know, I was in labor and my focus was on the contractions that had appeared out of nowhere :) 

Shortly after they were born, the girls were whisked away to the NICU at Brigham and Women's hospital (where I delivered). I'll say upfront that I couldn't be more grateful for the care we received during our stay there. It's not only one of the best hospitals in the country, but also has one of the best NICUs, and for that I will be forever thankful! Being away from my babies was truly one of the hardest things, but knowing they were under the best care helped ease the pain a bit.

From the onset, the girls were born super healthy (so thankful for this!). My water broke simply because the girls had run out of room to grow, rather than due to an infection or something. Charley had no major complications or health issues -- my now chubba wubba just needed to grow!

Charley, only 1 day old, sleeping with her mouth wide open (it kills me)!
Maddy was put on a CPAP machine, as it was taking too much energy for her to fully breath on her own, but she was only on it for 2 days and was never intubated (always breathing room air), which was amazing! From what I understand, the need for a CPAP is very normal for babies born at this gestational age (Charley was just an overachiever and didn't need one ha!). 

Both girls had IVs (the big white cast-looking thing in the above picture), which gave them fluids. They were also fed donor breast milk for the first 5 days or so, until my breastmilk started to come in. This was a great option that our NICU had, as it allowed the girls to receive all the antibodies and nutrients that I couldn't give them yet. 

On Day 5, I was discharged from the hospital and it was by far the most difficult day of my life. I looked forward to going home and sleeping in my own bed (and finally eat some real food), but even the thought of leaving my babies had me in tears. I was discharged in the morning and we spent the whole day with the girls in the NICU (they thankfully had their own private room, so we were able to spend significant amounts of time in there and be comfortable). Leaving to go home that night was the absolute worst. I cried before we left. I cried the whole way home. I cried the whole night without them there. All my husband and I did was look at pictures and videos of them the whole night. I felt helpless and incomplete. It's amazing how quickly your world changes once you have children. Nothing matters but them and leaving their side when they were only 5 days old was just awful. 

The next day, we got up first thing, ate breakfast, grabbed coffee, and made our way back into the hospital to be with our girls. This was pretty much the routine for the next four weeks. 

My husband decided to go back to work the week following my discharge, so that he could spend time at home with the girls once they were released. Since I had had a C Section, I wasn't able to drive for at least 2-3 weeks post-op. I will admit that it was difficult to depend on other people so much. All I wanted was to wake up and go see my girls on my own time, but I couldn't. I would wait for my mom to come pick me up and bring me to the hospital (I always tried to get there before their 11am feeding). Once there, I would stay by their side all day. Days consisted of pumping, helping the nurses take their temperatures and change their diapers (this was done before every feed), and do skin-to-skin whenever I was allowed to. In the beginning, we had to be careful to not overstimulate the girls or jostle them around too much as it would effect their ability to digest feeds. My husband would come in to the hospital after work to see the girls and then take us both home. Most days, we wouldn't get home until 8 or 9 pm. 

The days were so long and yet went by so fast. 

By week one, both girls had their IVs out and were able to spend some time outside of their incubators. Before then, we couldn't have them out for long and always had them bundled up in warm blankets (we still continued to do this, but the girls were also finally just big enough to fit into Preemie-sized clothes). They were just about 3-3 1/2 lbs in this picture (basically just skin and bones haha).

Kangarooing with Maddy -- skin to skin was my favorite <3
After two weeks, the girls were out of their incubators! When I arrived at the hospital that day, I honestly couldn't believe it. Tears of joy spilled from my eyes and I just kept staring at them both with amazement. There were no doors or walls surrounding my babies! I was free to pick them up and hold them whenever I wanted, but more importantly, it meant the girls were able to regulate their body temperature on their own, which was a key component to going home. Hooray! I always looked forward to seeing what the nurses dressed them in that day (I kept them plenty stocked with outfits and swaddle blankets). 

And for those of you wondering, the orange tubes in their noses are their feeding tubes! The girls loved to try and pull them out (and were successful more than a few times).

Once the girls hit 35 gestational weeks, we started to introduce bottle feeding (the last component to going home!). We started slowly; if the girls were really alert and awake at a feeding, we would try to feed them 10mLs (1 oz is approximately 30 mLs) through a bottle and the rest through their feeding tubes. Some days they did great and others, they just had zero interest in trying and would sleep through the entire feed. The main objective was to get them to eat, swallow, and breathe all at the same time (at that age, they are able to do all three separately but not necessarily all together). However, doing all that is extremely tiring for them, so it takes time to build them up to that point. Everyday we would try to bottle feed and depending on how well they did, we would increase in frequency and the amount in the bottle vs. in the feeding tube.

By week 3, the girls were identified as 'Feeder/Growers,' which basically means we were mainly focused on feeding (no other health complications). This stage was very frustrating for me as it was constantly two steps forward and one step back. The girls would take the bottle great and then there would be a day or two where they just wouldn't take it at all. At this point, I was just so anxious to get out of the NICU that I would get frustrated when they wouldn't eat from the bottle well. I know this isn't fair to them because the nurses warned us it was extremely common, but as an adult who can easily eat/drink, you just can't comprehend the difficulty of it for a preemie. 

The last two weeks in the NICU were solely focused on this. The goal was to get them to take all feeds by bottle for at least 24 hours straight. Once they were able to do that, the feeding tubes could come out and then shortly after, it would be time to go home!

On November 16th (middle of week 4), I arrived at the NICU to find both girls WITHOUT feeding tubes! I honestly couldn't even believe it. I literally jumped up  and down with excitement. The NP on duty was near by and started laughing at my reaction -- hey, I was SO happy, what can I say?! Then she gave me the best news, all else being equal, Charley could go home the next day. WHAT! WHAT! Queue the water works people. 

The NP also reminded me that Charley had to pass the car seat test before she could go home -- the test comprises of putting the baby in their car seat, fully strapped in, for 90 minutes (the max time a baby should be in the car seat daily) without any breathing issues. This of course put me in panic mode because I didn't even have the car seat installed or with me (thankfully I was able to go to our local police station the next day to get them both installed).

Thankfully she passed the car seat test and on November 17th, Charley was able to come home. Look at how tiny she was in the car seat!! She hadn't even reached 5 lbs yet (thankfully we bought the Chicco Key Fit 30 car seats, as their minimum weight is 4 lbs!).

Maddy unfortunately had to stay in the NICU a couple more days, as she had a sleep apnea episode one evening and the rule is that after an apnea episode, the baby has to remain in the hospital for 5 days to ensure it doesn't occur again. 

Those couple of days with one baby home and one baby still at the hospital were brutal. Not only because we wanted both of our babies home (and lets be honest, we wanted OUT of the hospital), but also because we weren't allowed to bring Charley with us to the hospital to see Maddy. Since flu season had begun, no child under the age of 12 was allowed in the NICU. Thankfully my parents live close by and were more than willing to watch Charley while we went into the hospital. It was hard for me to not stay all day with Maddy at the hospital, as I had been used to doing, but with Charley being home, I just couldn't.

We visited Maddy every day and she continued to take all her feeds from the bottle and had no other apnea episodes. She passed her car seat test with flying colors and finally we brought our baby girl home on November 20th, exactly 4 weeks after their birth date. I'm pretty sure it was one of the best days ever!

Maddy's first night home! Still can't believe how tiny she was <3

While spending the first 4 weeks of our daughter's lives at the hospital was not ideal and really difficult at times, there were a few pros to the whole experience. One pro is that it gave me time to heal from my C-Section. I was able get a full nights sleep and take it easy around the house, which ultimately left me in a better place physically and mentally when they did come home. The second upside was that four weeks in the NICU was like wearing training wheels. We were able to ease into parenthood and could constantly ask questions and learn all about newborn/preemie behavior. I wasn't anxious when we brought the girls home, but felt more confident than I had imagined I would, as I truly felt ready to handle it all.

I'm so thankful that our babies are healthy and happy. They continue to grow everyday and motherhood, while challenging, is simply the best!

If you made it through this post, you're a rockstar! I know it's lengthy, but hopefully our NICU journey can help other parents out there going through the same thing.

Xo, MacKenzie 

No comments:

Post a Comment