Before my water broke, I didn’t even know what NICU stood for. Even during the week I was in the hospital, I didn’t think much about it. We were actually scheduled to take a tour of the NICU on that Sunday afternoon but ironically ended up getting a first-hand look of a different kind. By the time our tour was supposed to take place, we were already NICU parents.
The first few times we went to the NICU on Sunday are kind of a blur – we were really still caught up in the euphoria of having a baby. We had lots of visitors between both sets of grandparents and various other family members who came. We had to organize our trips since only four people were allowed at Maddie’s bedside at a time. I finally got to hold her that afternoon, but Jordan and I were the only ones that could. Aside from being on a CPAP machine for about an hour when she was first born to make sure her lungs were capable of fully inflating, she never had to have any ventilation or oxygen. Overall, we were told she was doing very well and already proving to be a very stubborn and independent little girl!
Monday was more of the same. I guess it was strange not to have my baby with me all the time, but I really didn’t know any different since she was my first. In some ways it just felt like Jordan and I were back to the way we were – the two of us. We visited Maddie when we could (which I’ll explain more later) but spent most of the time in my recovery room resting and enjoying time with family.
The reality of our situation began to sink in on Tuesday as check out time approached. A small part of me was just relieved to be getting out of there after 10 ridiculous days, but obviously the predominant feeling was anything but relief. Throughout my pregnancy as I looked forward to Maddie’s arrival, NEVER did I think I would be leaving the hospital without her. Another one of those special moments that eluded me. But as it turned out, no sooner had we gotten home and gotten all our stuff inside then it was time to back to the hospital to see her! And basically, that’s the story of the next six weeks of our lives.
The first thing the NICU staff told us was to not even bother asking when she would be coming home. “Plan for your due date” was the company line. But I never believed we would be there even remotely that long. Yes, she was small, but she was perfectly healthy. She just needed to grow a little and learn how to suck. How hard could that be? Famous last words!
In the end, Maddie spent 43 days in the NICU and came home 13 days shy of her due date. Turns out that sucking is usually the very last reflex babies develop, and takes a LOOOOOONG time to perfect. They didn’t even want her trying to suck until she was 34 weeks (she was always referred to by her gestational age in the NICU, never her actual age). Until that time, she was fed through a tube inserted directly into her stomach. That bright orange tube stayed in almost the entire time she was there and became a prominent feature in all of our NICU pictures. Even once she started nursing, she didn’t have the stamina to eat as much as she needed so they would finish her feedings through the tube. Her very first feeding was a whopping 3 mL (30 mL is approximately one ounce). I would pump milk at home eight times a day and bring it to the hospital for her. Obviously I built up quite a stockpile! Once 34 weeks hit, she was allowed to start “non-nutritive sucking,” which basically meant I was supposed to put her up against me and get her used to just the thought of sucking, no latching required. She latched and started drinking the very first time. Of course, my hopes soared that she would be coming home soon, but instead we languished for weeks while she worked up to what was considered a full feeding. At first, I was only allowed to nurse her once a day so that she wouldn’t waste too many precious calories with the effort. She needed those puppies to grow! I had a 30-minute time limit for the same reason. Each feeding would begin and end with a weigh-in, which allowed the nurses to estimate how much she had actually gotten. As her numbers slowly improved, I got to add in more nursing until I was up to feeding her four times a day. She also got used to eating from bottles since Jordan and the night nurses utilized that method. As the days dragged on, our hopes of finally bringing her home basically hinged on what the scale read after each feeding. Numbers in the teens were heartbreaking. The day she broke 40 was one of the happiest we had.
The next thing we had to get used to was the schedule. The neonatologists explained to us that babies only grow when they’re in the deepest stage of sleep, so it was very important that Maddie get as much sleep as possible. Which wasn’t going to happen with Mom hovering around 24/7. So basically, we were put on a three-hour schedule. Every three hours, her nurse would “get in” with her: change her diaper, check her temperature and start her feeding. These were the times we could visit and interact with her. Other than that, we were politely asked to stay away. So our world became divided up into 3-hour intervals. At first, I was trying to go be with her every time, but after getting some common sense knocked into me by my husband and one particularly wonderful nurse (Lynda), I settled into a more manageable routine. I visited Maddie every day at 10 a.m., 1 p.m. 7 p.m. and 10 p.m. Jordan always joined me for the last two visits after he got home from work and school. I would spend about an hour at the hospital each time including the time it took to get through security, drop off my milk, get an update from her nurse, do her cares and spend time with her. Even something simple like changing her diaper became a much-anticipated event; we were determined to do everything we could to take care of her, even if that was limited to diaper duty. Then I would go home, pump, and eat something; by then it would pretty much be time to go back! Our lives revolved around these scheduled visits. We looked forward to each and every time we went and hated when it came time to go – walking out of the hospital over and over and over without her sucked. We started a tradition of stopping by 7-11 for donuts and Pepsi after our 10 p.m. visit – a little celebration of another day down.
Through these regular visits, Jordan and I became experts on all things Maddie. We were serious pros when it came to taking her temperature, reading her chart and interpreting her heart rate monitor and oxygen saturation numbers. While there were a couple nurses who probably thought us (meaning me) a tiny bit overbearing, most of them were awesome and would tell us anything and everything we wanted to know. I had many in-depth discussions about everything from the shape of her head to the color of her poop. We always said Maddie was so lucky to have so many wonderful “aunts” taking care of her! We learned how to give Maddie baths (with cotton balls at first before she graduated to a big girl tub), how to swaddle her and how to rotate her sleeping positions (because she was hooked up to monitors, Maddie got to sleep on her tummy and sides – her tummy was her favorite).
Holding her was always the biggest ordeal. There were so many cords and wires to unhook and position! At first we were only allowed to hold her twice a day. Because preemies have underdeveloped nervous systems, being held and touched can actually be very agitating to them. We weren’t supposed to stroke her at all and couldn’t rock in the chair when we held her. Instead, they taught us the art of containment touch, which is basically steady pressure applied in such a way as to make her feel like she’s still in the womb. Most of my holding times were skin-to-skin, which we learned has been proven to help preemie babies leave the hospital twice as fast. I usually held her at 10 a.m. because I missed her so much at night while Jordan preferred 10 p.m. when the NICU was the most quiet.
As I mentioned before, Maddie had very little in the way of actual health problems. She spent some time under a jaundice light (common for most babies), was on a steady stream of IV antibiotics during the first week and actually got regular doses of caffeine, which helped stimulate her heart rate. How ironic that pregnant women are supposed to stay away from caffeine during their pregnancies (I admit enjoying a Pepsi every once in a while) and yet here Maddie was getting regular fixes! Perhaps the weirdest procedure she had was the insertion of a PICC line. Basically, they inserted a tiny tube in her arm that ran all the way up her vein and across her chest close to her heart. This allowed them to administer any medicines, etc., without having to poke her every time. If you shined a light directly on her arm, you could actually see the tube … weird! The neonatologists took care of her for the first three weeks, but then they decided she was doing so well they were comfortable transferring care to her pediatrician, Dr. Later, who is seriously awesome! We chose Dr. Later based on my OBGYN’s recommendation, and I’m so glad we did! Because his office was actually connected to the hospital, he ended up taking care of a lot of the NICU babies, a fact which we of course didn’t know when we chose him but ended up being a huge comfort to us. All the nurses sang his praises, and he definitely knows his stuff when it comes to preemies. He came to check on Maddie every morning and has taken great care of her in the months since. I will definitely miss him when we move!
While we really appreciated Dr. Later and all of the wonderful NICU nurses, there was one person who became even more important to us during our NICU stay – Annie. Annie was Maddie’s occupational therapist. I know it sounds weird. I mean, at this point the girl couldn’t even eat much less hold down a job. But it turns out that an occupational therapist is just in the business of helping people in the occupation of living. Annie was an expert in all things preemie. Like, we’re talking, leading specialist in the country expert. Annie knew EVERYTHING and was anxious to teach us as much as she could about how to take care of our little girl and get her home. We spent the most time working on nursing since that’s what Maddie really had to learn, and Annie came to as many feedings as she could to make sure things were going well. We loved having her there and learning from her. She tended to be a bit straight forward in her approach (our motto became “it’s Annie’s way or the highway”) but we really just thought she was hilarious! She often told us that “Miss Madison” was her favorite, and she was definitely ours. Maddie’s baby doll is named Baby Annie in her honor :)
Obviously it would be impossible to sum up 43 days in one blog post (which is already getting too long as it is!) There are definitely hundreds of other stories I could tell, but I also don’t want to overlook the big picture. Being a NICU parent is unlike anything else I can imagine. I can’t even describe how hard it is to be told when you can and can’t visit and hold and feed your baby. Twice, when I went to visit her, she wasn’t there because they had moved her while I was gone – talk about scary! Her last move was to the “NICU overflow,” basically some back hallway on a lower floor with one nurse. Although they tried to tell me this was a good sign because it meant she was one of the closest babies to going home, I had a really hard time with that one! Sometimes I just wanted to walk in there and say “forget this; she’s my baby and I’m taking her home!” But we resolved at the very beginning of this process that we would be patient and trust the people who knew what they were doing. While we missed her terribly, we didn’t want her to come home a single second before she was ready. So we did the best we could. We visited so much and insisted on being so involved that when we really were getting ready to bring her home they broke protocol and didn’t ask us to stay overnight to prove that we could take care of her – by that time, we were doing everything for her anyway! I especially had fun “decorating” and brought her clothes, her laundry basket and some other odds and ends to make her space feel as cheerful as possible. Gramma Ter made her several hair bows to wear, which ended up starting a dangerous trend!
But our approach wasn’t for everyone. The saddest part of our NICU experience didn’t have anything to do with Maddie. It was seeing the other babies. Having a NICU baby is tough, and while I had the strength and support of an awesome husband, a wonderful extended family and especially a very loving Heavenly Father to help me cope, some parents just couldn’t handle it and reacted by staying away. Their thought was that they would let the NICU personnel take care of their baby until he/she was ready to come home, then they would come pick the baby up and start being parents. The baby next to Maddie in her last area was never visited. We once overhead a nurse on the phone with another set of parents, trying to convince them how important it was to visit and bond with their child. One unwed teenage mother refused to do any cares for her daughter, coming only to change her into various outfits (that really got Annie going) and take pictures before heading out again. Heartbreaking stuff. I obviously have no right to judge anyone else and don’t intend to sound like I am; I just hope Maddie knows that we did our best to love her and take care of her as much as we could.
Part of me still worries that one day she’ll compare the pictures of her early existence to what she will watch her brothers and sisters experience and feel cheated. Why didn’t we hold her more? Why do all her pictures have so many tubes and wires everywhere? How come we left her at the hospital but brought all the others home with us? Because you decided to kick a hole in Mommy’s tummy! ;) Sometimes I feel cheated. When it happened to my sister-in-law, I joked that if you knew the eventual outcome would still be good, who wouldn’t want to cut 8 weeks off their pregnancy, right?! WRONG. Whenever I hear women in their last trimester bemoaning swollen feet and huge stomachs, I just want to shake them and tell them how much worse the alternative is. I never got to experience so many of those things that serve as a sort of rite of passage into motherhood. And while we were of course incredibly happy when our little girl was born, our joy was tempered by the fear and anxiety of not knowing what was coming next.
I left that hospital without my baby four times a day, every day for 43 days. Each time, I felt like I was leaving a piece of my soul. Thank goodness for Pepsi and donuts at 7-11! And for wonderful doctors and nurses. And for the miracles of technology. And for Priesthood blessings. And for an AMAZING husband. And for a loving Heavenly Father. Because if there’s anything I want to take away from this experience and I want Maddie to know, it’s that she is a precious daughter of God. And even though we had to leave her way too many times, He never did.
Six days old
Maddie's digs
Waking up is hard to do!
Waking up is hard to do!
