cathfriday

Hi, this message has reached me recently and I thought it would be great to share it also with the 99nicu community "We would like to promote an important survey about Patient and Family Center Care during the COVID-19 crisis developed by California Preterm Birth Initiative. The purpose of the survey is to gather information about changes to policies and practice due to COVID-19 and how hospitals are engaging patient and family advisors in planning and implementing changes. The following people are eligible to answer the survey: Hospital Administrator Patient Care Unit Leader Direct Patient Care Provider Patient- and family-centered care Coordinator/Director Patient/Family Advisory Council Member or other advisor role Data (de-identified) from the survey will be rapidly reported on website so that the results can be used to improve patient care as we all continue our work to lessen the impact of COVID-19 on patients and families. Please follow the link to the official website below: https://pretermbirthca.ucsf.edu/covid-19-hospital-restrictions-surveying-impact-patient-and-family-centered-care We appreciate your support and please consider forwarding this to your friends and colleagues in your organization and elsewhere. On behalf of the Separation and Closeness Experiences in the Neonatal Environment (SCENE) Steering group, Anna Axelin Director of the SCENE research group ------------------------------------ Anna Axelin, RN, PhD, Associate Professor Department of Nursing Science University of Turku, Finland FI-20014 e-mail: anmaax@utu.fi mobile: +358-40-502 9905 "

Thanks for your comment, Stefan! In Turku, it's very similar, but I'm getting information from Poland that in many places they first limited visiting hours for parents, and then banned parents from the NICU altogether... I have mixed feelings about it for sure. I don't want to belittle the threat the new virus is imposing, but I believe that the trauma of isolating parents from their baby might have equally devastating and maybe even longer-lasting consequences. Would love to hear more from others too!

Quick question- what are the rules right now in your NICU? Are the parents (asymptomatic) still allowed to visit/stay with their baby during the hospitalization in the unit? Share your thoughts and practices!

For months I've been dreaming to have a possibility to work from my sofa in my pyjamas. Now my dreams are coming true 😅 I keep hearing from people "oh but there's nothing you can do about it!" and it just triggers me. We can all contribute to improve the safety of the most fragile citizens by undertaking some measures. At least in this sense we are not completely "powerless"!

Dear fellow Ph.D. students, full-time researchers, and other fellow scientists, please #staythefuckhome. In many grant proposals, we write "this research has the potential to save lives, because... ". Let's face it- most of our research won't save lives (or at least not at once)*. No matter how fantastic our research projects are, science takes time. But what can actually save lives immediately is US STAYING HOME. This way we - the (relatively) young people in big academic campuses- won't be spreading the virus that might be deadly for others: for an old lady in the shop (who takes care of her ill husband at home), our senior supervisor (who is also an attending in the unit, so in case he gets sick, they would be running understaffed), a young mother (who will have only moderate symptoms, but will have to arrange some care for her children- possibly transferring them to her own parents, exposing them to an infection). Let's think outside of our own bubble. I don't know if there's much more we can do, but if we are lucky, it might be just enough. Work from home, write from home, think from home, read from home. We always complain that there's not enough time to read and learn- here's your chance! And if your main area of interest is neonatology, there's a fantastic treat for you- if you stay home. Karolinska NIDCAP Training and Research Center organizes a *fabulous* online conference. Go to their pages, write an email (stina.klemming@sll.se) and get your link to access this amazing event. Kind regards, Katarzyna #staythefuckhome Piatek *unless you're actually working on the vaccine or new drug for coronavirus- then just keep working ❤️

Oh well, so many thoughts after reading this article! Thanks for sharing! Although I agree with every word she says, I think that we should keep in mind that she describes the American reality, which in many ways may be different from European experiences. In many (most?) countries in Europe, we are privileged to have a generous parental leave and (rather) well-coordinated healthcare system. It doesn't change the fact that becoming a parent in the context of the Neonatal Intensive Care Unit must be extremely challenging- and we need to recognize the need to support NICU parents not only during hospitalization but also after the discharge. What really makes me grind my teeth is the fragment about guilt related to insufficient pumping. There is a beautiful (truly) article written by my colleague Sarah Holdren, in which she argues that many NICU mums feel that pumping is actually the only way they can contribute to their infant wellbeing because other ways to engage parents and promote closeness may not be available. I wholeheartedly recommend you reading that comparison of practices in Finland and the USA, the whole article is available here in Open Access. https://bmcpregnancychildbirth.biomedcentral.com/articles/10.1186/s12884-019-2505-2

It’s been some time since I last posted here. Many things have changed in my life since then- the most important transition being my decision to move to Finland to work as a research fellow with the Baby-friendly Ventilation Study Group in Turku. The life of a beginning clinical researcher deserves a separate post here (it may even come at some point). To celebrate my first anniversary in Finland I would like to share 3 things I wish somebody had told me before I moved here. Enjoy! 1.Get nylon pants. The weather in Finland is truly whimsical. We have had a kind spring, warm summer, and lovely, colorful autumn. I was able to enjoy each of these seasons, biking in the Archipelago, watching sun that never sets, traveling north to see ruska, and finally seeing Northern Lights for the first time in my life. My only concern here is rain. It doesn’t follow laws of gravity AT ALL. How is that possible, that those raindrops are not falling DOWN from the sky, but they are literally attacking you from every direction? It took me some time to overcome my frustration and find a solution. I have closely observed (relatively) happy Finns and discovered that the most important clothing item here is… nylon waterproof pants. The trick is they have to be big enough that you can pull them over your regular pants to keep you dry and warm when it rains. This small thing has definitely improved my comfort here. It has also created that precious feeling of belongingness- I could finally proudly join the rustling and swishing sisterhood of waterproof pants. 2. Drop in the fertility rate is a real thing. Ok, I am a doctor and I KNOW it is a real thing. I know that statistics don’t lie. I know. But I kind of didn’t want to acknowledge that it may actually impact my study. We have had a fairly good start of the patient recruitment, which had kept me busy in spring. But then summer had arrived, and the recruitment slowed down. I kept thinking that maybe it’s just because of the summertime in general (like preemies would be able to pick a season when they want to arrive early, right?). But then autumn has come, and it was time to face the music- I have a problem. In order to recruit the desired number of infants, I may either stay here forever OR I need to come up with a clever solution very soon. Thankfully, I have amazingly supportive supervisors here and we decided- we are expanding! That means more traveling for me (and possibly more blog posts for you)! 3. Compulsive talking about 99nicu may help you to dance more salsa. That statement may seem rather weird, but there is a logical explanation. Very recently I’ve had a chance to attend a regional neonatal meeting in Finland. I was asked to present highlights from the 99nicu Meetup in Copenhagen. Since I like the whole concept of 99nicu.org and loved two conferences I had attended, I took that task very seriously- meticulously prepared my PowerPoint presentation and practiced my performance out loud at home. I decided to tell participants about lectures I remembered the best- neonatal transports, simulations in the NICU and infants surviving at the limit of viability. You may argue that there were more important lectures there, but those were the ones that still “spark joy” after all these months. Do you remember that sim scenario of postpartum seizures in a birthing pool that Ruth Gottstein talked about? I’ve discussed it with so many people in so many places already, that it might have become my favorite topic of random conversations with strangers. Anyways, I think the presentation went well- participants awarded me the prize for the best presentation of the evening! I received a gift card that I can use for cultural or fitness activities in Turku- including more salsa classes in my favorite dance school. Voila! Thank you 99nicu!

Can you provide a link to the publication? Would love to read it!

Dear all, I would like to cordially invite you to join the NAVA ventilation workshops in Turku, Finland. The goal of this event is to increase skills on the use of NAVA ventilation in the NICUs, which already have some experience of NAVA and they have a Servo-i or Servo-n ventilator. We have last 5 places available! Date: 24-25.01.2019 Location: Turku, Finland Registration fee: 600€ + taxes (incl. lunches and refreshments during the workshops) How to register: contact Hanna Soukka (hanna.soukka@utu.fi or NAVA@tyks.fi before November 30, 2018) I've attached the preliminary program- check it out! In case of any questions, don't hesitate to ask here or email! On behalf of Hanna Soukka and Baby Friendly Ventilation Study Group, CathFriday NAVA workshop January 2019 invitation letter and preliminary program.pdf

July was very eventful for me and that had caused my on-line silence. I had a chance to visit again my beloved Finland and now I'm back with fresh thoughts and ideas (and also hundreds of photos). Enjoy! Kotiloma is a word in Finnish that means „vacation at home”. But in some NICUs around Finland it has grown into a bit different meaning. Kotiloma is a practice of arranging a little vacation at home for NICU patients before their final discharge. The routine is quite simple. On the kotiloma day parents come to the unit with a car seat and a set of clothes. When the seat is warm and the baby is ready, they just simply take their baby home for a day. Before they leave, they inform the staff about the time of their return. If they would feel insecure, they can always return to the unit sooner and their room will be waiting for them. The duration of the stay away from the unit can last from a couple of hours up to a whole weekend. Sounds interesting? There are two basic conditions: parents' willingness and staff's trust in parents' abilities. Parents need to be confident when it comes to securing baby’s needs. Since kotiloma applies mostly to preemies, parents are generally well prepared (hello Family Centered Care!) and very eager to take the baby home for this vacation. It’s like a free trial of full-time parenthood and you can still bring the baby back But seriously speaking, after spending several weeks in the unit with the baby, they really just want to change the surroundings and go out for a while. If the home is too far away, or if the thing is just logistically too difficult, they can take their child for a long walk in a baby stroller instead. Since parents are in the unit every day, taking care of their little one, it is quite simple for the medical staff (especially for the fantastic nurses!) to assess their preparedness, encourage them and prepare them also technically for kotiloma. Basically there are two types of kids who go for a vacation to home. The first one is when the baby is being fed by a feeding tube and getting close to the discharge date. Parents generally feel quite comfortable with using the tube and since they are practically living in the unit, it’s not a big hassle for them to take the baby home with this tube. The second group of babies are the ones on an "apnea countdown" . Those are sent home with saturation monitors and parents are specifically educated by nurses to interpret heart rate and SatO2. They are additionally trained in infant resuscitation. This whole „crash course” takes no more than 1 hour. If the parents are eager for the kotiloma and the staff is ready to train them, they can take the baby home for the daytime (so they can observe the monitors, but those babies have to return to the Unit for the nighttime.) If you are even a bit like me, and I know many of you are, you will ask „BUT WHO IS LEGALLY RESPONSIBLE FOR THAT BABY? WHO IS IN CHARGE IF ANYTHING HAPPENS?”. Well, since the kid is not really discharged from the hospital, that would be you. I know it sounds tricky, but my (not-so-)confidential informant Samuli Rautava from the TYKS NICU says, that since they’ve been doing that (already 5 years!), nothing has ever happened. If the family has any questions or concerns during the kotiloma, they are encouraged to call the nursing station. They are never left alone with their worries. When it comes to financial issues, I would say (naively) that nobody pays anything extra for that vacation. Since the kid hasn’t been discharged, the healthcare fund pays for the day in the unit. Parents provide their own car, clothes and the car seat. No more costs are involved. Easy as that Is it safe? Generally life is known to be a dangerous adventure But it’s easy to notice, that this practice is based on a mutual trust agreement. "You- The Parents- trust us- The Medical Staff- every day, that we perform medical procedures based on our best knowledge and best available evidence. So WE trust YOU, that you will not idle away our efforts and do your best to provide the best possible care to your baby". This cooperation is working well. Parents are properly educated in their baby’s needs (thanks to Close Collaboration with Parents Training Program). They learn how to perform CPR and call 112 in case of emergency. The nursing staff always gets the information about the condition of other siblings and cohabitants (to avoid infections etc). Okay, but what are the benefits? Besides empowerment of the parents (which is a huge thing, especially since they are on-their-way to the discharge date), it actually makes the whole discharge process easier. After the kotiloma parents' confidence grows. It is like a short trial of full stay-at-home parenthood. When you take your precious, fragile baby home, some questions may arise in your head. It feels good to know, that you will be able to ask them to your own pediatrician and nurses when you return to the unit. This practice enables parents to observe their child in a home setting. They notice how the baby looks around and curiously contemplates the new environment. It is also a good chance for other cohabitants (those furry ones too!) to get to know their future housemate. Kotiloma is simply a joy for parents, baby and whole family. A sign saying „our baby is doing fine”. Some happy moment to cherish. We all need those sometimes!

@Stefan Johansson I think that pushing the boundaries would be to intubate an infant on mothers chest during primary stabilization in the delivery room 😉I haven't heard about anybody doing that YET, but I'm watching carefully NINO Birth and Nils Bergman, they are very into KMC ; >

When it comes to inserting tubes, NICU staff is probably the most experienced in the world. Intubation is one of the first procedures we learn as young doctors in NICU. Some of us perform it through nose, some through mouth. But who performs it on mother’s or father’s chest? Well, I’ve seen it only once or twice, but that is a practice in Uppsala University Hospital. What do you need to perform it? An intubation set. A baby, that actually needs that intubation. It can be a planned or an acute one. And then you need that special thing- a parent (or a caregiver), that is willing to help you with the procedure. When I came back from Sweden, I shared this crazy idea with one neonatal nurse. She told me, that it must be extremely stressful for the parent and that she considers it inhumane to push parents to do that. Well, I can say that I partly agree with her, giving the specification of the unit she worked in at that time. It was a medium size NICU of the highest reference, where parents were welcome to visit the baby, but there were no beds for them, and the chairs for the kangaroo care were each time brought in for that short „session” of skin-to-skin care. LET’S TALK ABOUT SPONTANEITY THERE! But in Uppsala University Hospital this procedure is possible, because you have parents there all the time. They basically never leave the unit. If they are not doing skin-to-skin with their baby (watching a movie on a little player approved by the unit or reading a book), they are cooking or eating in the parent’s area or taking shower in their bathroom. They are not patients there, but they are staying there overnight, so in the morning you can see some of them sneaking out to the bathroom in their pyjamas. So in that situation, you don’t just have a scared parent, who is there from time to time, smiling nervously to his or her child through the plastic incubator. You have a semi-professional companion, who knows his or her baby’s needs best and who is there to care for their own infant. So back to the main topic. Intubation on parent’s chest. Ok, you may say- that sounds okay, but what are the benefits? Why should we risk intubating on an unstable ground? I asked Erik Normann, the Head of the Department of Neonatology in Akademiska Hospital in Uppsala the same question. His opinion is, that in that way child stays in it’s preferred care site during this stressful moment. And in case of spontaneous extubation during skin-to-skin care, you don’t have to move the child back to the incubator to place the tube, so this is quicker. And that skin-to-skin care just continues after the procedure. There’s no special technique or limitations for that procedure, but he admits, that it creates some logistic problems with the staff position around the bed. Also, bending over parent’s chest is not the most optimal working position (especially for taller doctors 😉). But what you get in return for that effort is a happier baby, supported and stabilized by their parents hands. I’m not sure if all of us are „there yet”. What is the more important, is that we are heading in that direction- to this mental NICUland, where parents are there for the baby all the time, to offer warmth of their skin and delicacy of their touch, and where medical staff is ready to accept their help and presence. Together we can do more! So hands up guys- who does that too in their unit? Who would like to try?✋✋✋

Thank for your encouraging comments @Aymen Eshene and @M C Fadous Khalife! I think that if the situation is stressful for the medical staff, it's probably also stressful for the baby and the parents. In those situations they could probably use even more of each other's support than when the baby is doing well. But I agree, we need to gather more information and tips from units like Turku, especially about how to cope with that stress around parents:) They do that every day for some years now! When it comes to space issues, it is a big problem. But I will try to show you, that the change starts with the attitude, and the architectural change will follow.