“If you will call your troubles experiences, and remember that every experience develops some latent force within you, you will grow vigorous and happy, however adverse your circumstances may seem to be.” ~ John Heywood
The last 2 weeks have been remarkable in so many ways. I suppose if I could summarize it all in one quote, I would borrow the above words from John Heywood, oh wait, I did that:) In the way that so many things in life work when you are meant to pay attention to them, the word NICU keeps arising in my inbox. Questions about how to help others going through the NICU, requests for me to reach out to folks who are going through the NICU experience, and traveling down the road of our own personal journey on Monday night at the March of Dimes event telling the 300 people in the room, most of whom have never been in the NICU just what is smells, tastes, looks and feels like to be there day after day.
Please know that while I don’t consider myself an expert, as there is really no such thing in that EVERY experience is different, I did spend nearly 4 months nearly 9-12 hours a day in the hospital/NICU so experience makes me a veteran of sorts. The variables differ in the babies, parents, coping, support, doctors, nurses, hospitals, and situations, but at its core, the spectrum of the emotions is similar. So, as I often wished someone would have handed me Guide or Core Tenants type of document when I was in the NICU, I decided to do one myself. So here it is, if you know anyone who is in the NICU or if you are in the NICU, please consider sharing this with them.
This is Shannon Pruitt’s NICU 101 Guide should you ever find yourself in one. This could also apply if you have a family member or friend in the hospital. The experiences are different, but you are part of a system now, and you must be aware and cognizant of the information below as you end up spending a lot of time in a land where you are not a native:
1. This experience will suck. No matter who you are or how you deal with things, it sucks.
2. Don’t get ahead of yourself – it Is absolutely great to read and research what is happening to you. A great resource is “Preemies, from Dana Weschsler Linden, Emma Trenti Paroli, and Mia Wechsler Donron, MD.” However, do not, I repeat, do not read ahead about everything that can go wrong. If you suspect something specific is wrong, talk to the nurses, talk to the doctors and do your research but you can completely freak yourself out by reading everything that “could happen” as this can be a long journey and can take a lot of different paths.
3. Make sure you have a good Pediatrician – Unless your baby is somewhere far away from you due to certain needs, if at all possible, make sure you have a pediatrician who has access and respect in the NICU. The nurses often told us that you can tell a good doctor by his propensity to re-swaddle a baby after his exam. Our Doctor, Doctor Scott Cohen and his partner Dr. Bess Raker, were amazing. One of them visited our babies every day and called me after to update me on their assessments. It’s like having an extra pair of eyes, an extra voice and a consigliere to bounce things off of when you think you might be crazy but also you just might be right.. If you are a high risk pregnancy or know someone who is, you would be wise to get your pediatrician meet and greet very early. We just happened to do ours at 27 weeks, little did I know when we signed our “hello, I am” sheet on Tuesday, I would be meeting Dr. Cohen again on the following Monday and our babies would have been delivered the day before.
4. Remember, there is a reason they call it the practice of medicine – Every child is different. Literally like snowflakes each one is a complicated system of being for which there is no manual. Therefore, Doctors just like everyone else must make assessments and decisions based on education, experience, common sense, and faith. The most important piece you can bring to the table is the willingness to learn. Treat the hospital like a new class you have been dying to take. Memorize the vocabulary, learn the sentence structure, the acronyms and the non-verbal cues. Taking the time to do this will make you a better advocate and more respected in this environment.
5. Talk, listen, and talk more – Although everyone processes differently, make the effort to talk to your partner. Talk about how you feel, how you process, and how you can work through this together.
6. People will want to, but won’t know how to support you, don’t be afraid to tell them. – Whether you need meals because you aren’t eating or don’t have time or want to cook, you need groceries, you need someone to water your plants or feed your pet, or you just need some space and time but are grateful for lovely messages, texts, or cards. Also, try not to cope for others. The more information you share with others, the more they too will feel fear for you and your family, so as best you can try to share information that is factual and that you will be comfortable answering questions about. For example if a doctor says, “your baby may have a brain bleed,” telling everyone you know that, sets you up for a. needing to answer questions about what that might mean, and b. this will scare them which may add pressure to your situation of feeling you need to comfort them. You must must must take care of yourself at this time. So share what you want to share but not things that may add additional pressure to you.
7. Allow yourself opportunities to grieve – this is one of the most challenging experiences you can go through. Be sure you allow yourself to feel the fear, the sadness and the confusion that comes with this experience. If you need to cry, cry. Don’t be embarrassed, you have to get it out.
8. Take advantage of NICU resources but beware of overly intrusive parents – From the time you walk through the doors, you will see parents who seem to have bond or are part of a club you never dreamed of wanting a membership for, but now wish more than anything you could get in. These relationships take time and like any relationships you must measure them wisely. You only have to talk about what you want to, when you want to and how you want to. Some parents want to share everything and complain while others’ issues are not as serious as yours but act like Chicken Little. You will naturally fall in with people who can support you when you need it but will also give you time when you need it.
9. Deal how you need to deal, but try not to isolate yourself – As a parent who was in the NICU everyday for hours on end, I saw parents of all types. Those that were there for hours on end like me, and those that could not bear to see their children in the state they were in and therefore those babies were all alone. These tiny babies need more than anything Love. Of course, oxygen, meds, antibiotics, etc. are critical but love conquers all. Good NICU nurses will help you do whatever you need to do to hold your child. The monitors, cords, wires, IVs, tubes, and their frailty will intimidate you but all you have to do is ask.
10.Be present – Another benefit of spending time in the hospital is “being known”. “Being known” is important because as an involved parent, you are better able to advocate for your child which you will absolutely need to do at several points during this process and this “being known” will help you to be taken seriously by the people controlling your child’s care. This will also help when you want to ask for a “family meeting” to discuss the status of your child’s care, which again as and advocate you should not be afraid to do.
11. Be respectful but ask questions – Like in any foreign land, you should always be respectful; however this does not mean you should be complacent. In the NICU, especially if you spend a great deal of time there, you will realize it’s important to stop pretending you understand what everyone is saying and ask questions. Do you own research but you also need to not be afraid to cross-reference what you have read with the practical applications for your child. Again, this is not the time to read up on NEC when there is no chance that your child may have it, but if you hear whisperings or something comes up in your conversations with your nurses, don’t be afraid to clarify. This said, if you do, also make sure that you are respectful of the people who are trying the best they can to help your child (ren).
12. Keep hope and faith alive. These children while so very fragile are strong and resilient and they are fighters. As someone said to me, these souls are here for a reason so as long as they are you fight right along side them and do everything you can to help them fight for every single moment.
13. Lose the guilt – it’s not your fault. – If you go to any of the NICU support groups (again, entirely up to you), one of the first topics discussed is often the topic of guilt. You can play back in your head a million times what you might have done that contributed to this situation, but the reality is, you will never know in most cases what happened and why it was time, so blaming yourself isn’t helpful nor does it make sense. Focusing on what you can do now and how you can help your child(ren) is a much better use of these emotions and brain power.
14. Go to www.marchofdimes.com as a resource for your experience. There is useful information there that can help.
15. Check out http://www.inspire.com/conditions/premature-babies/. It is by far the best online support network I found for different types of conditions, especially prematurity. This is surely one place you are not alone and if you feel like you can’t talk to live people in your network this may be a good place to release some of your emotions.
16. And as a last item, much like a post I did in the early stages of my blogging (https://mynewfavoriteday.com/2011/04/14/finding-strength-in-being-happy-in-holland-when-i-wanted-to-go-to-italy/) read the short essay by Emily Pearl Kingsley, “Welcome to Holland.” It is quite famous, but here is a link if you just want to read the poem and not my post: http://www.our-kids.org/archives/Holland.html
I hope this is helpful to someone out there somewhere. There are amazing people out there with similar experiences to you. If someone offers to have you talk to a friend, don’t be afraid to say yes. In full disclosure, this is not something I was good at, however, a few people sent me emails that I did not know based on friends telling them of my experience and it was so moving. So, perhaps that’s the last piece, if you are a friend of someone going through something like this, even allowing others “who have been through it” send a note might be a lovely gesture, but know your audience.
If you are going through this experience, or know someone who is, it’s hard to think how can today be ‘mynewfavoriteday’. But, this is where counting your blessings if only one at a time, can do wonders to realize how lucky you are to simply be able to say the baby is alive and that’s a great start. Much love and hugs if you are reading this and I wish you much strength, hope and faith.
If you do share this with someone, it would warm my heart to hear about it, so please comment if you can. Also, if you have your own thoughts about what might be helpful, please feel free to add those here as well! Thank you.
12 thoughts on “A “NICU 101 Guide for Parents and Families.” Please share if it can be valuable.”
Great job Shannon, well said. I will definitely pass on to others. You were a shining star in the NICU family and Q and E are very lucky to have you as their advocate, mother and friend.
Thanks so much Pam. That would be great as you know all too well, the NICU can be so foreign and it takes a while to find your footing. Thank you so much and thanks for being by our side during this journey, in and out of the NICU:)
I can’t imagine leaving my child in the NICU for 4 months! You are so brave and strong for doing so. Like you, I was one of those parents that was there all day, every day. Getting up was all about getting to the hospital, and going home was always heartbreaking, but full of hope that the next day would bring better news. I won’t go into a play-by-play here, but I can definitely relate to each of these tips. Thanks for sharing them…I wish I’d had them when my little one was in the NICU!
Leslie, thanks so so so much for commenting and leaving your story. I know this is the very very abridged version but your corroboration that this is something that you would have wanted means a lot to me.
Your statement about how getting up in the morning was all about going to the hospital struck a cord in my heart. As moms and survivors of this experience we have to be strong and brave, we have no other choice.
Is your little one doing well now?
Again, thanks for commenting it really does mean a lot as I am truly hopeful that someone like you and me will be able to use this in some way shape or form.
Wow, I can’t imagine what it must be like to deliver twins so prematurely and have every day be a new challenge but also a blessing because they are still with you. I’m very happy that they both made it out of the NICU, even if there are some residual effects. I’ll keep you and your family in my thoughts and prayers. The way you fight for your children is really quite inspiring. You don’t pity yourself. Instead, it appears you walk with pride, trying to make the best out of each day and that is really an inspiration.
Alex, your comment nearly made me cry and feel so proud at the same time. Thank you for your kind words and for saying what I have hoped would come through in this blog and through my words. I do feel a great sense of pride in the strength we have mustered through this experience and in E’s ability to push through all that she does on a daily basis and for Q to support her and still flourish and for our family as we try and find the meaning, inspiration and lessons in each day! Thank you again for reading and commenting, I really am grateful.
Keep doing what you are doing. Your family is a very special one with an inspiring story to tell. I know you will have an impact on so many people. Thank you for first commenting on my blog so I could find yours!
Thanks Alex, this is so touching and thoughtful. I really appreciate your sentiments and encouragement. Thanks for continuing to visit and comment, it means a lot to me.
How thoughtful written, this really all rings very true with me. I had an IUGR little one (1lbs10oz) at 29w5d and it was literally I didn’t feel she was moving quite her normal way going to bed one night and by the end of that day she had been born. So no chance to prepare for the NICU which, you could argue, was both a good and bad thing. As of course my experience was different I could have added 10pages of ranting about pumping breast milk. And oddly, I seemed to have a lot of issues with nurses who weren’t my baby’s nurse sticking their noses in. Had I not been next to her incubator, on more than 1 occasion I pro any would have decked said noses. For instance, high on the list of things NOT to say to a NICU momma is “I don’t know where your baby is”… But I digress.
My daughter is now 16 months actual and I adjust starting to read and interact with the preemie community as I feel I still have some healing to do. So I enjoy seeing your take. Some of my additional thoughts:
speaking to point #1 – it so belongs there, if I had stopped reading then I would have found that a fair summary.
I think it was point 4 – regarding what you share with others. I grew to hate hearing people ask “so she will be fine then, she’s doing good she will be fine?” people seemed to ask this wanting you to tell them it’s all fine so that they could feel good. I struggled with well-meaning people (my family and closest friends though were really fantastic support, so I should count myself lucky there)
Points 2 and 9 I think, damn I should have taken notes! About over-researching and the sort. My husband basically banned me because I was scaring the crap out of him and he was scared enough. I’m a researcher by nature and I have a BSc so I am armed with a lot more general knowledge on the subject then he had. But I did stop looking ahead while we were there, for him. I distinctly remember eyeing down a doctor at one point, about a week in maybe, saying “look, I think she is doing pretty well from the way everyone is talking, I’m not going torun through bunch of what-ifs with you. Just tell me if there is a MAC truck coming, a MAC truck, ok?” he understood.
About being present – I was a dawn to dusk, and sometimes beyond, presence. In ourNICU you could be there 23 hours a day. It was important to me to know every nuance – and I did. I agree that being known is important. You are the constant and it’s an important position so that you can educate the nurses and doctors and anyone else what is normal for your child. I certainly felt that the more you were there the more this was weighted. I think it was day5 or 6, rounds with 12 people around our incubator. One of the docs said to our nurse, while pointing to the incubator “is this one yours?” I knew what he meant, I did not take offense – but the Neonatologist did. She said loudly, hands on my shoulders: “this is mom. This is HER baby”. It was very empowering. It’s so hard to be so near yet so far and this one little line carried me far.
Thank you for writing this, for letting me stir up these feeling and spill them all out to you!
Hi Emma, so awesome that you are here, E’s name is actually Emma so my fondness for you came before you even wrote you amazing and strong comments. I know that place in your heart that hasn’t healed, it’s a big driver for why I started blogging in the first place. I too did not actively engage with the preemie community mostly because I process inwardly whereas my husband is external so he was in inspire all the time reading others stories, while I strictly told him not to share them with me.
I love your last line in your comments. It’s truly amazing how one line from someone can give you exactly what you need to be strong and to find your place. I think seeing your comment will definitely help someone else who is or has gone through something similar to us, and that is a wonderful gift you are giving them. I hope your daughter is well and she is so clearly a fighter and gets that from her mommy and daddy. I wish you and your family so much love, strength and healing. If you ever want to come back and share your thoughts I would be so happy and honored to have you here.