Hand to Hold's Official Blog: Written by Parents for Parents

Life as a Preemie Working Mom after the NICU

I have yet to meet a mother who has said motherhood is anything like she anticipated. Furthermore, motherhood to a preemie is anything like any mother could ever imagine if she had to find herself in that position. It isn’t just about having a cute, small baby.

I had all of 10 minutes’ notice I was about to become a preemie mom, which was barely enough time to hysterically call my parents and send a few text messages before I found myself off on a wild stretcher ride and into a scene that looked like it was from a weekly TV medical drama that left my head spinning and body reeling. Clearly, this was not how it was supposed to happen. This was not the plan! This was not how I had imagined my right of passage into motherhood that I had waited 30 years for and fought for so hard for. This is not how it was supposed to be.

Over the next few days and weeks the reality of it all sets in. “He” is named Kellan Thomas. I couldn’t be more proud of my lil guy and all of his milestones over the next few weeks. Weeks become months. My life has been COMPLETELY flipped upside down. All these big “plans” I had for maternity leave were thrown out the window. All those dreams I had for bonding with my new baby, are now nightmares because I couldn’t even hold my baby for the first few days. Now all I can think about is his delivery, all the stuff they permanently engrave in your head in the NICU, the “dos” and “don’ts,” the tests he needs, the specialists he has to see, the unknowns, his eating, watching him sleep for endless hours because you’re afraid to let him go too long. And then there was what I had even put off an extra month, but it had always been looming over my head, you know, that 4 letter word—W-O-R-K!!!

Work? I mean who can think about work? I’m lucky if I brush my teeth by noon on a good day. Going back to work was always in the game plan from day one but having a preemie wasn’t a part of that game plan. So, doesn’t that mean we should take a look at plan B? Do we have a plan B?

So Plan B begins to take shape. The first thing we did was started weighing pros and cons. I quickly began to realize my worst fear was a reality. I was going to have to go back to work and I was going to have to leave Kellan; every day. How could I leave Kellan again? It was as devastating as being discharged from the hospital without him because he had to stay behind in the NICU. And now I have to think about going back to work and not being home with him? We had worked so hard to get him home. But I had to stay focused; I had to do this to provide for him. We were onto Plan B and this was how it had to be. Kellan would go to a private in-home daycare, I would return to work where I had good benefits, including private health insurance which was essential due to Kellan’s health problems as a result of his prematurity. This was the (new) plan.

It’s my first day back, the day I hoped I would never really have to face. It was surreal. It felt kind of like the first day of school. There were new people who I hadn’t met which had gotten hired and people who had left while I was out on leave. I felt like I had missed so much but deep down I think everyone knew what I was really missing. I made sure not to call to check on Kellan because I knew what it would do to me emotionally if I did. I survived the first day, then the second, and finally the first week. It took a few weeks for it to all catch up to me. It was probably the around the first month when the exhaustion and stress really started to take its toll. Kellan has severe reflux and feeding problems which cause him to have projectile vomiting spells. He wakes up several times a night as a result and to feed. The up and down all night, stress of getting back to the high paced work environment, being a preemie mom, and trying to maintaining a house is starting to become taxing. I feel like I have become a robot. Get up, do what I can to get thru the day, get thru the night, and repeat. I need an IV bag set to a constant drip and a personal assistant.

Now that I am back to work, barely keeping my head a float, I need to somehow have to add another layer to the equation and figure out how I am going to manage Kellan’s doctor’s appointments, therapy appointments and GI Specialist appointment, which is a 2.5 hour drive each way. I think I am going to need a pair of water wings because I feel I am already in above my head. How am I going to ask for more time off? I just came back to work and now I need to ask for sick leave to multiple doctor and specialist appointments, some in the same week? Do I even have sick time? I am going to miss important meetings. I can’t miss ‘that’ meeting! And how am I ever going to meet these deadlines? Wait, deadlines?

No one ever said being a preemie mom was going to be easy. I can safely tell you that being a working, professional, preemie mom is the hardest thing I have ever done to date. It really is a constant juggling act. I struggle each and every day to try to find a fair balance and often times wonder if I will ever find that balance or if there even is one? From managing meetings, departmental budgets and deadlines to feeding and medication schedules, doctor’s appointments, tests and everything in the middle, it’s a constant battle of prioritizing and finding the most efficient and effective means in which to meet all of the objectives.

With each closing day, I ask myself did I do the right thing? Does it ever get any easier? Is this really what’s best for my family? I think these questions are answered differently for everyone. For Kellan and I, the answer for right now is yes. I think it will always been a work in progress and we will adapt and overcome the situations life presents us with. It might not have been our initial plan but I am proud to say I am a working, preemie mom!

Jennifer Sweetman About Jennifer Sweetman

After years of battling endometriosis, severe polycystic ovary syndrome, multiple surgeries, years of infertility and nine doctors telling her she'd never conceive, Jennifer Sweetman (FL) gave birth to an amazing 33-weeker, Kellan. He was born via emergency c-section due to preeclampsia, premature rupture of membranes and separation of the placenta. After a brief NICU stay, Kellan now sees a myriad of specialists and therapists for reflux, GERD, torticollis, developmental delays, feeding issues and oral aversion. Jennifer believes prematurity needs a vocal advocate and that mindset led her to PB101. You can contact her on Facebook or via email.

Comments

  1. Lori Walters-Kramer says:

    Jennifer’s story mirrors mine. I used all my medical leave when my son was born at 28 weeks. We were advised to keep him out of daycare as long as possible so we had a nanny come to the house until Owen was 19 months. She was hired for 20 hours a week so my husband and I had to juggle our schedules. Before Owen was born I was easily putting in 60 hours a week. That had to change. In many respects I had a job that allowed for flexibility yet … the work *still* had to get done. Getting work done at home was very difficult. Owen was not a good sleeper, also had oral aversions, reflux and respiratory illnesses when he was a baby. He did get sick much more often when he got to daycare so I was very happy that we made the decision to keep him out of daycare as long as possible. I was in higher ed and was not as productive during those first 2 years of Owen’s life as I otherwise may have been. Even after he went to daycare he had PT, OT and appointsments with doctors. Those appointments, of course, take time and it also takes time to be educated about what is going on so you can be your child’s best advocate. I did kick it up a notch or two toward the end of my probationary period but one of my supervisors said I was not “consistently productive” and, in the end, my contract was not renewed. In short, the time I needed to focus on Owen was used against me. Things in the workplace have got to change so that parents of preemies are not punished because they have a medically fragile child.

    BTW – Owen is now 8! He has gotten stronger each year. He still struggles with tracheomalacia/bronchomalacia and was diagnosed as being Small for Gestational Age with no catch up growth (for which he is eligible for Human growth hormone therapy).

  2. I cannot tell you how similar our stories are. I too am a working mum of a 32week 2lbs 10oz preemie (who is almost 3 now and healthy):) I was planning on resigning, however I took one step at a time and here I am still working after 3 years. But i really couldn’t have worked if my company/supervisor/team was not as caring and flexible as they were. I was allowed to work anytime that worked for me (at times it was 5am to 2pm!), and for a few months I was even allowed to work from home for two days. I often wondered how preemie parents manage without an understanding work environment. My husband and I did not have any family, so we had to do everything. So if my co-workers/supervisors were not as awesome as they were, I would have had to quit. I hope all companies are as flexible and understanding as my company is.

  3. Melissa D says:

    My 26 weeker was in the NICU for 135 days, or 4 and 1/2 months. I had six weeks off to “recover from my c-section” (also known as “spend every waking moment with my tiny newborn daughter”) and then I HAD to go back to work. She was on my health insurance plan (my husband worked for a non-profit and had horrible benefits), and our million dollar baby obviously needed insurance. I HATED being at work while my baby was in the NICU and took a second six week leave (unpaid, plus “please pay us your insurance premium so your baby can keep going to the thousands of doctors’ appointments you have scheduled”) and then it was back to work for me for another two years. The very instant I could quit my job, I did. And obviously I’m still a little bitter about. :)

  4. Wow! You could not have summed up my life any better ~ except by adding in another baby! It is nice to know that there are other moms out there who simply cannot quit their jobs and stay at home with their preemies. Thank you for sharing this!

  5. Wow!! I am in the same position, I go back to work on Monday and am dreading it! I am a single mom of an 11 yr old girl & and an 8 week old preemie born at 25 weeks. I hate that I have to work while my precious baby is in the NICU & hate even more that I will be working when she comes home. My company has not been very understanding with all of this. I feel very angry & bitter at the world right now.

  6. Delona King says:

    Love this blog! I took 12 weeks of maternity leave and will be starting a 6 month leave of absence at the end of July. My preemie came home with oxygen and an apnea monitor, so I am the new housewife/stay at home mommy for a bit. The thought of going back to work is dreadful. I give you props for doing it!!

  7. My twins were born at 25weeks. My son spent 98 days in the NICU and my daughter was there 113 days. I always wanted to be a working mother- I thought modeling for my children the importnace of maintaining one’s own ambitions was important. But I never dreamed I’d be a working mother to preemies who are special needs infants. Balancing work priorities with the real needs of my babies is killing me… Literally. I feel like a piece of me dies every time I’m forced to pick something work related over them. I work for the government where you’d think I’d have support, but now that my duo are home, it’s “back to work mentality” and all about how my time off might affect others. There is no sense of work -life balance. No appreciation for life outside work when you have colleagues and supervisors with either no children or grown children. Disheartened, heartbroken and conflicted to the core. And like others, we are on my health insurance plan and with health issues still very much a part of our lives, we can’t risk losing it. I long for the day when I can quit and find a job that appreciates family and/or will let me work from home. Yes, being a working mother is hard. Being a working mother to preemie infants is the hardest thing imaginable.

  8. oh i was so glad to read your story, i don’t feel so alone. I am also facing that issue of going back to work. my son has been home 3 weeks now and I’m out of vacation time due to being in hospital for 11 days prior to his birth. My water broke at 28 weeks and at 29 weeks 4 days I had prolasped chord and had emergency c-section.

  9. Your story resonated with me. I had my son at 25 weeks 2 days via emergency c-section and returned to work 2 weeks later so that I could save my maternity leave for when he came home. After 4 months in the NICU, he finally came home. I was able to spend 12 weeks at home with him, but now I have to go back to work. I just finished my first full week and it feels harder than leaving him at the hospital. In the NICU, I knew he needed people with more skills than I had to take care of him. Now, I feel like a terrible person leaving him everyday because I am capable of caring for him. I explored the idea of staying at home full time or working part time, but financially, it isn’t possible. It breaks my heart to leave him everyday. The worst part is not being able to attend his doctor appointments. He averages 2 per week and with no accrued sick/vacation time, there’s no way I can even attempt to go. Returning to work had always been in the plan, but I never thought I’d be leaving a fragile, vulnerable child. It feels so lonely and the feeling of guilt are awful.

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