If you are frequent readers of this blog you know that Isabella was born almost 6 weeks early. Even though we were lucky enough to have been in the incredible care of Lenox Hill Hospital in NYC it was still a difficult experience. Isabella was home after just 5 short days but so many people I know endure much longer and difficult stays. After our positive experience it has always been a goal of mine to contribute to a charity that supports the NICU. The nurses, doctors and staff are truly amazing people. Finally, I have the opportunity to get back.
My friend Chelsea MacMeekin, who recently had twins, one of which had an extended stay in the NICU, introduced me to The Cottie & Cake Fund. The Cottie & Cake Fund supports the neonatology program at Levine Children’s Hospital as well as the Charlotte Fetal Care Center. Most recently, funds raised through In the NIC of Time have supported new technology in Levine Children’s Hospital’s Neonatal Intensive Care Nursery. It provides a secure, private webcam system, installed at each infant’s bedside. It’s designed to offer parents secure, real-time video of their infant when they cannot be at the hospital. A free service to patients and their families. This offers peace of mind and alleviates some of the anxiety parents experience with a newborn in the hospital.
On November 9th I will be fortunate enough to attend an art auction at SOCO Gallery in support of this organization. The Cottie & Cake Fund was founded by an incredible family whose full story you can watch here. Be forewarned – you will need the tissues. In an effort to help raise awareness around the NICU and this fund, I want to share my friend Chelsea’s experience with the NICU. In case you aren’t in a position where you can financially give back you can at least know how to best provide support for a family going through this experience. So here is my very good friend Chelsea’s experience.
Chelsea MacMeekin’s NICU Story
For those that don’t know you, you are incredibly organized and efficient person. Tell us about the moment you found out you were having twins and how you as a super type A (I mean this in the nicest way possible) prepared for it.
It’s OK – I wear the ‘Super Type A’ badge proudly and I actually think that it benefitted me not only in the prep of having twins, but also in managing our first few months though it probably drove my husband crazy.
When our doctor told us there was a second heartbeat, I laughed at him. I legitimately thought that it was a funny OBGYN prank. It wasn’t a prank and he didn’t find it nearly as funny as I did. Whether it was because twins are high-risk or I was in shock, we didn’t do much preparation at first. On top of that, I was incredibly sick and fatigued my first trimester making it nearly impossible to focus on anything but counting down the hours until I was back in bed.
However, once I hit my second trimester and our scans continued to come back positively, I put my efforts into how we could make our lives as logistically easy as possible because that was something that I could control. Every time I was at Target, I’d buy diapers and wipes. I picked up clothing for their first year periodically while I was out and about. I stocked our pantry and freezer with easy meals. And I researched – a ton – on twin must-haves: which strollers were best (UppaBaby Vista), what car did we need (Unfortunately for my teenage self, a mini-van), how to wear twins (Weego Twin Carrier). We learned with our first that you can very rarely control what babies do. Even with best laid plans, every day can been a bit of a gamble. However, what I could control were these little things, like having enough supplies on hand, that ultimately took a big thing off of our plate.
20% of twins born will spend some time in the Neonatal Intensive Care Unit but your situation was rather unique. Can you tell us why?
At a baseline, we were prepared to have to spend time in the NICU with twins. They usually arrive earlier than full-term babies and are smaller and for those reasons require some additional time to grow and develop under supervised care. For us, we knew at least one of the girls would be in the NICU because at 30 weeks we identified that Elle had an issue with her intestines which caused them to not form properly, essentially leaving a twist and blockage in her tract. Though entirely treatable with a good outcome, she would require surgery immediately and recovery would take 4-8 weeks and then likely another surgery during which she would have to be in the NICU.
Can you share what it was like to have a child in the NICU? How long was Elle’s NICU stay?
Elle’s stay was a total of 72 days, almost 2 and a half months. There’s a lot of unpack when you talk about having a child in the NICU. There are not only a lot of complicated feelings that go along with it, but also logistically it is complicated as well (at least for us). The best & most succinct way I can describe it to people is that it is the best-worst-experience I hope you never have. There’s not much worse that I can equate to having a child in the intensive care unit from birth – it is heart-wrenching to say the very least. As a parent, your emotions range from happiness with every milestone your baby hits to sadness when there are setback to even guilt (oh the mother guilt) for the fact that your child has to go through what they are going through.
Then there is the sheer logistical side of things, which for us were not for the faint of heart. We had one child in pre-K, another newborn at home, and one in the NICU. It required an extreme amount of coordination in our day to get one to school, take care of the other that was home, and then go to the NICU to spend as much time with Elle as I could before I had to head home and go back to taking care of the other members of our household who were home. To a large extent, it felt like we were living two lives: one at home and one at the NICU which was very hard. With everything we did as a family of four, we had a piece of us that was missing and there was nothing that we could do expect wait.
To me, this was one of the hardest parts – trying to enjoy the present while dealing with the feelings surrounding not having your complete family home with you. It’s the little things like, we’ll never have pictures of the two of them together after birth or they both weren’t at their older brother’s preK graduation or even Elle and Lola didn’t even see each other after birth until Elle went in for her second surgery nearly two months after birth. I can appreciate that in the grand scheme of things, these aren’t tremendously big misses or terrible things, but they are reminders of why Elle wasn’t with us for those first few months and the feelings that go along with that.
Regardless of the emotional and logistical challenges, our experience in the NICU itself was nothing short of excellent which is why I coined it as the best-worst experience. From the care Elle received to the support that the entire team provided – it made an incredibly difficult and complicated time, a little easier. Most NICUs have such a depth of services and support for the families who have to use their services: from patient coordinators, to educational dinners, to physical therapists, and even massage therapists for the parents and that is all on top of the amazing medical professionals who are caring for your child (or children).
For those of us that have not been in the NICU can you describe the environment?
Even the best NICUs (and we were at one of the very best) are still very medically driven and they have to be. Even before entering, you have to essentially scrub in and put on disposable gown so that you don’t introduce unnecessary germs into the environment. In our unit, there were separate bedsides that your baby stays in for the majority of the time they are there which would be partitioned off for a little bit of privacy (though there’s not much). Depending upon their needs they usually start in an incubator and gradually progress up to an open metal crib. The NICU Team does an incredible job at making it feel as homey and comfortable as they possibly can by using blankets that they have on-site or you bring, clothes from home, and child development toys, but it is still an intensive care unit with constant machine sounds and fluorescent lights.
NICUs are also generally very busy. There are a lot of specialists, doctors, nurses, and staff around, but they all make a point to know you and your family. I was always amazed with how personal and specialized the care that we received was. They are incredibly knowledgeable about not only your child in the NICU but who you and your family are which is so nice because it gives you a level of comfort and ease in a very uncomfortable and uneasy situation.
The hardest part for me having in terms of having a baby in the NICU is leaving the hospital after giving birth without your child. What was the hardest part for you?
Hands down the hardest part for me was leaving our baby in the NICU to go home after I was discharged. The second hardest was the first time I went to the NICU by myself to visit Elle and had to leave again by myself. It never really gets easier, but you learn how to manage those feelings as best as you can.
Both babies reunited at home
Any tips for parents who are either preparing for this situation or going through it right now?
If you are preparing for it, I highly recommend scheduling a visit with your local NICU and meet with the neonatologist. It was incredibly helpful for us so that we could know what to expect and set our own expectations for overall what being in the NICU would be like. For those going through it right now, I would say, be gentle on yourself both physically and emotionally. Not only are you recovering from giving birth (which is difficult in and of itself), but in my experience, there are all sorts of difficult emotions that come with having a child in the NICU. You have to realize that you did an amazing job growing your baby and that you are doing a tremendous job in being a parent and managing something so serious so soon after having a baby. As a parent, it’s the hardest thing that I have done. Take it one day at a time and take time to take care of yourself.
I didn’t realize how incredible the experience of skin to skin was until I was able to experience it with Summer. Kangaroo care is the term that is typically used for preterm babies, infants wherein the infant is held, skin-to-skin, with an adult. Kangaroo care for pre-term infants may be restricted to a few hours per day, but if they are medically stable that time may be extended. Some parents may keep their babies in-arms for many hours per day. This might be slightly emotional but could you share your experience with skin to skin in the NICU. After having experienced both sides it is a very very different experience.
Not unlike many parents in the NICU, it was a few days before we were even able to hold Elle for the first time which was excruciating. However, as soon as we could do Kangaroo care, we did and it was such an amazing and wonderful experience. Our NICUs parameters were that if you were going to do it, it had to be for at least an hour. And it was a process between having to wipe yourself down to ensure that you weren’t sharing any germs with your baby that could jeopardize their health to getting her settled with all of the wires, but I felt that it was transformative for not only her, but me. There is such restorative and therapeutic powers in skin-to-skin contact and being able to provide that comfort to your child. In addition to that, for me, it was a wonderful opportunity to bond with her because I was not able to breast-feed her due to the nature of her recovery process.
When Elle was still in the NICU what kind of support did you find most helpful from friends and relatives? Don’t be shy…anything you could have done without?
I’m the type of person who is very quick to say that I am fine and that we don’t need anything. Mostly because I don’t want to impose on other people. In this situation, I didn’t have the bandwidth to take the time to figure out what we did need.
I found the most helpful support were my friends who inserted themselves in thoughtful ways and didn’t put the ownership on us to tell them what we needed. Friends who were simply there to talk to me about anything I wanted to talk about. Who dropped off coffee on my front porch with only a text afterwards to say that there was something waiting for us out front. The ones that brought us food so it was one less thing we had to consider, who took Liam for a fun afternoon. Anyone who checked in with us periodically and understood when it took me 3 days to return a text or a call. I often find that big life events like this take up all of your mental space. So anyone who made our lives a little easier or brighter without having to be directed was so much appreciated.
Oh what could I have done without….the well-intended comments that ended up coming out all wrong. It’s all of our nature to want to make people feel better and I truly appreciate that. However, people also tend to be unintentionally careless with words in wanting to help you find the silver lining in your situation. We got a lot of You guys get to ease on into having twins with one at home and one in the hospital – which upset me more than helped. To us, that wasn’t a silver lining or a bright side. We wanted our baby to be better and home with us. If there’s one thing that I learned from this experience it is this: when you are in these situations you don’t necessarily need someone to make you feel better by pointing out the positives of the situation. Rather, to help you feel better by simply being there to listen. To have empathy even if they don’t have experience in whatever you are going through.
You have an adorable 5? year old son named Liam who is inquisitive and intelligent beyond his young years. How did you explain this situation to him?
We’ve always had a very open and honest conversations when it comes to Liam. Within the appropriate framework of course. Initially we didn’t share what exactly was going on with Elle until we had met with the neonatologist and had a few more answers ourselves as to what to expect in the NICU. When we had those answers and were closer to my due date, we talked about it over dinner. We explained to Liam that though sisters were fine, one wasn’t going to come home immediately with us because she needed surgery right after being born and that he wouldn’t be able to meet her immediately.
We let him ask questions and answered him. He has had surgery himself so it made it somewhat easier for him to conceptualize. It was one of the most heart-breaking conversations that I have ever had to have with him. He was worried about his sister and sad that he wouldn’t get to meet her immediately. However, there was a truly cool moment that came out of it. Which is that Liam got to choose which girl was named what. We had already picked out names, but I had been set on waiting to meet them before we decided who was who. Liam had asked which one of his sisters needed surgery. In that moment, it felt right to let him pick which of his sister’s got which name.
Unfortunately, due to visitation restrictions, he didn’t meet Elle for a full month but when he did, it was awesome. He came to be a regular at the hospital with us over the weekends. It was nice to have him be a part of Elle’s recovery as well. Deciding how, when and what to expose your child to at 5 years old is a precarious balance. As a parent, you have an innate need to protect them from unnecessary and difficult things. We made sure that we always talked to Liam about what he saw in the NICU and if he had any questions. Ultimately, we never wanted him to be worried about Elle or afraid of the hospital. Nor did we not want him to be involved. So it felt right and worked well for our family to take the approach that we did.
Once we returned home from the hospital I was extremely protective of Isabella. We had to buy her preemie clothes and if anyone ever commented on her size I would lash out at them. Silly in hindsight but at the time I didn’t want her to experience any additional pain. Did you experience anything similar?
For what it’s worth, I don’t think that is silly in hindsight at all. I find that I am still incredibly protective of Elle and likely will continue to be. Because Elle does have a twin sister, there is natural comparison when we are out and about. Though they are fraternal twins, people still expect them to look alike. They don’t at all, but there’s also a size difference because of how different their nutrition was their first few months and that is commented on the most. Though Elle has done a great job at catching up to her sister, she is still smaller and likely will always be. I still bristle whenever anyone mentions it (and it happens a lot).
Sometimes we don’t give ourselves enough time to absorb the severity of the situation. We typically have to go right into business mode to do what’s best for this teeny tiny life. As a NICU mom did you find this to be a difficult experience? If so, how did you deal with it? Did you join any support groups?
Having a child in the NICU was one of the most difficult experiences I have had to date. I am incredibly good at compartmentalization probably to a fault. However, that’s how I survived the first few months. Though I was not immune to a breakdown or two (or maybe three or four). By-in-large, I lived by our NICU rotation schedule and kept my head down as business as usual. I definitely did not address the severity of Elle’s situation until much later when everyone was home.
It wasn’t until my husband and I started talking about the first day of her life, her physical condition when she was born and what occurred after she was whisked out of the OR that I was in, all of which I was unaware of, that the fragile nature of her situation really started to sink in. I honestly don’t think that I have fully processed or dealt with it yet. I think that it will take some time to unpack those feelings and experiences. After sharing this I feel like perhaps I should join a support group. I also feel lucky that I have incredibly wonderful sounding boards in my life. From my mother, to my husband, to my friends who are all generous with their time to listen to me. The good news is they usually like to listen over a glass of wine.
Now that the amazing baby girl Elle is home and you have had some time to adapt to being a family of 5 – what’s next?! Given your personality I know you will be giving back to the NICU staff and helping future NICU parents. Other than getting involved in the Cottie & Cake Fund what else can people do to give back?
Getting involved in an organization like Cottie & Cake is a great way if you have the time to do it. If you don’t have time, you can attend events like our annual event, An Evening Under the Stars, on April 21, 2018. Or you can donate items directly to your local NICU. They are always looking for preemie and newborn sized clothes, blankets, and hats. There are also other organizations that support your local hospitals like the Ronald McDonald Houses. Like many people, I’ve always thought it was important to give back. Particularly to organizations which we have a personal connection. In my opinion, if you can make one life a little easier, a little better then it’s worth whatever you can give. Whether that’s time, donations, or both.