From Hope to Joy

A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds

I recently had the honor and pleasure of participating in the 3^rd Annual FDA-INC Neonatal Scientific Workshop in Bethesda, Maryland.

My role, as co-chair of the Communications Workgroup, was to plan and execute a 90 minute Breakout Session entitled “Communication Strategies to Promote a Research Culture”.

(Photo by Wakako Eklund)

Christina Bucci-Rechtweg (a pediatrician by trade who now works for Novartis Pharmaceuticals) was the other co-chair and I could not have asked for a better partner. Christina and I have known each other for a little over a year and I have had the pleasure of speaking with her on Capitol Hill on two different occasions (both addressing the Senate and the House of Representatives) on behalf of S.2041 and H.R. 5182. Christina is brilliant and hard-working and was instrumental in planning our Breakout Session activities.

But before I get into what our session was about and what we accomplished, I’m betting that you would like to know what INC and C-Path are and what the goal of the 3^rd Annual FDA-INC Neonatal Scientific Workshop actually was.

C-Path (Critical Path Institute) was founded in 2005 in Tucson, Arizona, and is an independent, non-profit organization dedicated to bringing scientists from the FDA, industry and academia all together to collaborate and improve the drug development and regulatory process for medical products.

INC (International Neonatal Consortium) launched on May 19, 2015, and is C-Path’s ninth consortium – a global collaboration formed to forge a predictable regulatory path for evaluating the safety and effectiveness of therapies for neonates.

“By uniting stakeholders from research institutions, drug developers, regulatory agencies, patient advocacy and other organizations,” said Janet Woodcock, Director of the U.S. Food and Drug Administration’s Center for Drug Evaluation and Research (FDA/CDER), “INC can develop practical tools that can be incorporated into clinical trials for neonates, which will then lead to more successful, efficient trials and provide this population with better treatments.”

INC’s Statement of Purpose:

INC will accelerate the development of safe and effective therapies for neonates. The consortium will engage the global neonatal community – families, neonatal nurses, academic scientists, regulators, pharmaceutical investigators, advocacy organizations, and funders – to focus on the needs of the neonate. Through teams that share data, knowledge, and expertise, INC will advance medical innovation and regulatory science for this underserved population.

I’m honored to be a part of INC!

At this workshop, co-sponsored by the FDA and Critical Path Institute, participants reviewed the progress of INC, discussed the challenges in conducting registration trials to prevent preterm birth, and the breakout groups tackled specific regulatory science issues for developing safe and effective therapies for neonates. Regulators from around the world engaged in working sessions with academic experts, interested companies, neonatal nursing organizations, NIH institutes, family groups and nonprofit organizations.

Day 1 began with several meetings of the working groups, including Severity for Neonatal Adverse Events, Retinopathy of Prematurity, and the Seizures Workgroup, and it ended with a workgroup dinner reception at the Bethesda North Marriott Hotel.

(PPA Members with Susan McCune- FDA Director of Pediatric Therapeutics: Photo by Wakako Eklund)

Day 2 began with Dr. Jonathan Davis (Tufts University, INC Co-Director) making the opening remarks. I also know Dr. Davis for over a year as he was the spearhead behind the Senate and House bills I mentioned above, and I had the pleasure of speaking on Capitol Hill with him. Dr. Davis has dedicated his entire career to bettering the outcomes of premature babies. Next, Susan McCune (Director of Office of Pediatric Therapeutics, FDA) gave a presentation titled “A New Era for Developing Neonatal Therapeutics”. After she was done speaking, each workgroup had a few minutes to share updates about what they have done and looked to accomplish in their Breakout Sessions. Soon after the workgroup summaries were complete, a presentation titled “Developing Endpoints for Use in Regulated Neonatal Trials” was given by Gerry Baer (FDA) and Ralph Bax (European Medicines Agency).

(Dr. Davis: Photo by Wakako Eklund)

(Me, Christina Bucci-Rechtweg, Dr. Jonathan Davis and Ally Kayton on Capitol Hill in 2016)

After a short coffee break, there was a panel session titled “Plenary Session on Challenges in Conducting Registration Trials to Prevent Preterm Birth”. Several people participated in this session, including Mark Turner (University of Liverpool, INC Co-Director), Olof Rugarn (Ferring Pharmaceuticals), Yosuke Komatsu (GlaxoSmithKline), Louise Kenny (University College- Cork Ireland), Errol Norwitz (Tufts Medical Center), Mehali Patel (Bliss), Deb Discenza (Preemie World and member of Preemie Parent Alliance), Ralph Bax (European Medicines Agency), and Barbara Wesley (FDA). Nicole Thiele from EFCNI (European Foundation for the Care of Newborn Infants) also called in and gave a presentation via WebEx.

(Mark Turner: Photo by Wakako Eklund)

Following the Plenary Session, we all took a break to eat lunch and get ready for the Breakout Sessions.

(Deb asked the members of PPA to stand. You can see me standing in the back! Photo by Wakako Eklund)

There were several concurrent Breakout Sessions, including the one that I was a part of, so I can only summarize what went on in the other sessions, after giving details about mine.

(Our Breakout Session: Photo by Wakako Eklund)

Christina Bucci-Rechtweg and I led the Breakout Session called “Communication Strategies to Promote a Research Culture”. We had a few goals. We wanted to build strategies that embed neonatal research that is family-centered in the NICU culture. In order to do this, we looked to first identify communication challenges in neonatal units that impede successful implementation of research.

(Members of the Communications Workgroup: Photo by Wakako Eklund)

We planned a mapping activity where we asked the participants to answer four questions regarding how parents are approached to enroll their babies in clinical trials and what makes them more likely to consent. This activity gave us a great deal of information on the current practices surrounding clinical trials in the NICU. Both Christina and I shared an informal literature review of some of the articles previously published on clinical trials in the NICU, from both the medical and the parent perspective. We also shared results from a survey we had previously given to parents of premature babies who are members of the Preemie Parent Alliance. This was also very telling and we are in the process of analyzing the entire survey, along with the parent comments and we will use that information to harness multi-stakeholder collaboration to address communication challenges and improve the quality and efficiency in neonatal research. Our session ended with a phone presentation given by Nicole Theile of EFCNI on a white paper they put out on the topics we were discussing.

Although Christina and I led the Breakout Session, we had a lot of input from the other members of our workgroup as well. I only recently joined INC and this workgroup so I am especially thankful to the other workgroup members for all of their work. They include Wakako Eklund (National Association of Neonatal Nurses), Lynn Hudson (C-Path), Carole Kenner (Council of International Neonatal Nurses), Jeff Ming (Sanofi Pharmaceuticals), Lily Mulugeta (FDA), Min Soo Park (Yonsei University), Ronald Portman (Novartis Pharmaceuticals), Randy Prescilla (Boston’s Children Hospital), Thomas Salaets (University of Leuven), Catherine Sherwin (University of Utah), Ine Skottheim Rusten (Norwegian Medicines Agency & PDCO), Adina Tocoian (Shire), Mark Turner (University of Liverpool), John Van Den Anker (Children’s National Health System), Sander Vinks (Cincinnati Children’s Hospital Medical Center), Kelly Wade (Children’s Hospital of Philadelphia), Siri Wang (Norwegian Medicines Agency and PDCO), and Anne Zajicek (National Institute of Child Health and Human Development/National Institutes of Health).

(Lynn Hudson from C-Path: Photo by Wakako Eklund)

(Ron Portman: Photo by Wakako Eklund)

Two other Breakout Sessions were running concurrently to ours and those were titled “Multiple Enrollment in Clinical Trials” (Co-Chaired by Dr. Jonathan Davis of Tufts Medical Center/INC Co-Director and Gerri Baer from the FDA) and “Long-term Outcomes” (Co-Chaired by Neil Marlow from the University College London and Mark Turner from the University of Liverpool/INC Co-Director). Although I could not attend either of those sessions, I heard their summaries at the end of the day and it seems as if both sessions were very successful.

The conference continued on with more concurrent Breakout Sessions after a short coffee break. I attended the session titled “Regulatory Challenges in Conducting Trials to Prevent Preterm Birth” (Chaired by Mark Turner). The other two Breakout Sessions were “Developing a Neonatal Common Protocol Template” (Co-Chaired by Ron Portman from Novartis Pharmaceuticals/INC Co-Director and Anne Cropp of Echelon Pharma Solutions) and “Applying Generic Severity Grading Criteria to Persistent Pulmonary Insufficiency of Prematurity” (Co-Chaired by Karel Allegaert and Thomas Salaets from the University of Leuven).

(“Regulatory Challenges in Conducting Trials to Prevent Preterm Birth”: Photo by Wakako Eklund)

Towards the end of the day we all assembled again as leaders from each Breakout Session reported back to the group with how their Breakout Session went, what was accomplished and what their next steps would be.

There were two more presentations given before Mark Turner’s closing remarks and our dinner reception.

First was “The Role of INC in Pediatric Trial Networks” by Edward Connor (PTC, I-ACT for Children) and William Tremm (Janssen Research & Development) and second was “Nonclinical Models of Neonatal Therapies” by Susan McCune (FDA). Both gave us a lot to think about as we me move towards our next steps on our INC committees.

(Christina and I in deep thought: Photo by Wakako Eklund)

Although I have spoken at several NICU events and nonprofit fundraisers in the realm of premature births, this was my first time participating in a conference where I felt that real change was being enacted towards preventing premature births as well as improving the treatments and medications used on our world’s current and future premature babies. As a member of The Morgan Leary Vaughan Fund’s Board of Directors, I can speak for the whole organization in saying that we are excited at the thought of new clinical trials being done to produce new medications to treat and cure Necrotizing Enterocolitis.

I can only hope that my present inexperience as a member of the International Neonatal Consortium (INC) will lead to vast experience in this space, as I continue to serve on INC’s Communications Workgroup. I look forward to what we will accomplish.

One of our first goals following this workshop is to create and publish INC’s quarterly newsletter.

Be on the lookout for it.

Please click HERE to view our first two publications of INC NEWS.

I want to mention two members of the Preemie Parent Alliance (PPA for short) that attended the event. Deb Discenza runs Preemie World, which she started after her daughter’s premature birth 13 years ago. Deb also spoke at the workshop. Dr. Yamile Jackson attended the workshop as well. She runs Nurtured by Design, a company she started after designing The Zaky and Kangaroo Zak. They are developmental products used on premature babies in the NICU and I highly recommend them both. She started her company after her son’s premature birth 15 years ago.

I would like to personally thank Christina Bucci-Rechtweg for her leadership and patience as I acclimated to the INC Communication Workgroup.

(Me and Christina)

Alicia West, Laura Butte and Lynn Hudson of C-Path deserve a lot of thanks (and rest!) for all of their hard work in putting the workshop together.

(Alisha and Laura from C-Path: Photo by Wakako Eklund)

I would also like to thank Wakako Eklund (NANN) for taking such wonderful photos at the event and allowing us to share them. She is a very talented Neonatal Nurse Practitioner and photographer!

(Wakako with Carol Kenner of COINN: Photo by Wakako Eklund)

And last, I would like to thank Dr. Jonathan Davis (Tufts University/INC Co-Director) who suggested that I get involved in INC and allowed me to make such meaningful connections. The future premature babies of the world will be much better off because of the dedication of Dr. Davis and his passion for neonatology.

Please visit INC’s website to see how you can help us with our goals. After all, advancements in neonatology cannot happen without research.

Oh, and I even got to see a Cherry Blossom. It was not down by the Potomac, but at least I got to see one!

As always, thank you for reading and for your support 🙂

Please comment on anything you found interesting or would like to know more about.

I recently had the pleasure of being part of the Prolacta Bioscience Education Day and Facility Tour in City of Industry, CA. in late January of this year. Many of the participants flew in from various locations across the United States and the group was made of up assorted careers and stakeholders- all of which have an interest in helping our most fragile patients- premature babies.

As most of the great ideas of the past began, the idea of Prolacta Bioscience began with a few like-minded and passionate people sitting around a dining room table discussing ways to help premature babies thrive.

They had a vision and were able to take their dream and turn it into a reality. This reality is something that many parents across the country are thankful for today.

Prolacta Bioscience, Inc. is the pioneer in standardized human milk-based nutritional products for premature infants in the neonatal intensive care unit (NICU). Prolacta believes that there is no adequate replacement for human breast milk and, as such, they believe infant nutritional products should be human milk-based. As a privately held, for-profit and scientifically driven company, committed to improving premature infant nutrition, Prolacta is using human milk to change the standard of care in the NICU.

In premature infants, breast milk feeding is associated with reduced infections and inflammatory diseases such as Necrotizing enterocolitis (NEC). NEC is a very serious disease where the intestinal tissue is injured or begins to die off and then a perforation occurs that allows bacteria and waste products to enter a baby’s blood stream. This very often leads to surgery requiring sections of the bowel to be removed and in many cases (about 40%) can lead to death. Human milk holds the power to reduce many of these cases.

For the first time in over six years, the American Academy of Pediatrics (AAP) has issued a policy statement regarding breastfeeding and the use of human milk. Their recommendations include a reaffirmation of exclusive breastfeeding for the first six months; use of human milk for all preterm infants, whether mother’s own milk or pasteurized donor human milk; and human milk should be fortified, with protein, minerals, and vitamins to ensure optimal nutrient intake for infants weighing less than 1500 grams at birth.

Prolacta Bioscience takes these recommendations very seriously.

They are the only company that provides standardized donor human milk fortified to a minimum of 20 Cal/fl oz and provides an average of 1.1 g protein/100ml. Moreover, they are they are the only company that provides a human milk-based fortifier essential for these tiny preemies. Their breast milk has a two-year shelf life supported by real-time stability studies. They also offer the only donor-matching program that tests for common drugs of abuse, nicotine or other “adulterations”. They screen all milk for HIV-1, HCV and HBV by polymerase chain reaction (PCR).

Here is the kicker- the type of analysis/testing that puts Prolacta Bioscience ahead of their competitors- far ahead!

Wait for it…

They store the DNA of all breast milk donors and are able to guarantee that mothers who were removed from the donor list for various reasons (drugs, alcohol, and other adulterations) cannot simply “try again” at a later date and donate milk in the future. Once you are removed from the donor program you cannot donate again and no one else can ever donate your milk under another name because they can match it to your specific forensic DNA profile. This protects all recipients from receiving human milk that was donated by someone who had unfit milk in the past.

You may be wondering why I attended the Prolacta Bioscience Clinical Discussion and Facility Tour.

First, I am a member of the Preemie Parent Alliance (PPA for short). Our Organization is dedicated to representing the needs and best interests of preemie families in all facets of healthcare policy, care guidelines, advocacy, education and family support. As a national network we are establishing a unified parent voice to advocate for infants, who cannot speak for themselves, and their families. PPA is a proud supporter of Prolacta Bioscience and their mission to make human milk available to all premature babies.

(Prolacta hangs the NICU Parent’s Bill of Rights- developed by the Preemie Parent Alliance)

Second, I am a member of The Morgan Leary Vaughan Fund’s Board of Directors. The Morgan Leary Vaughan Fund (Morgan’s Fund) is an all-volunteer, public charity dedicated to Necrotizing Enterocolitis (NEC). Our mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately cure NEC. I am a proud member of Morgan’s Fund and our mission fits in quite well with the goals of Prolacta Bioscience. We look forward to supporting all of Prolacta’s future research.

There is one more reason that I became interested in what Prolacta is doing. I have been teaching the secondary sciences at my local high school for over 18 years and all of this stuff is just plain fascinating!

Our day began with a delicious breakfast where Dr. Martin Lee (VP, Clinical Research and Development) and Dr. Victoria Niklas (Chief Medical and Scientific Officer) spoke to us about how Prolacta started, what they do, products they offer, and what they have accomplished since inception.

Right away I felt a vibe that you don’t often feel when visiting an industrial corporation. Everyone loves their job! From the people that spoke- to the people you passed in the hallways or chatted with in the labs- they all enjoy working at Prolacta and believe in what they do.

There is something to that.

Many Prolacta employees have a personal connection to a premature baby and that seems to motivate them even more. I can’t think of a better group of people to work on ways to improve the standard of care in the NICU, can you?

After our breakfast we were schooled on just how much effort goes into the guaranteeing the quality and safety of all Prolacta products. Scott Eaker (VP and Director of Quality and Regulatory Affairs) gave an impressive presentation on how they operate.

Next we learned about how the donor milk program works during a presentation by Raoqi Dulman (Director of Business Development). Since I already explained how detailed their milk donor screening process is, I will not do it again- but I will say that the processes they have in place puts Prolacta’s donor milk ahead of any other donor milk program out there, as far as quality and safety.

After after the presentations were done we were broken up into two groups and escorted around the facility. Joe Fournell (VP of Operations) was the leader of my tour. He was a great guide and he also has a connection to a premature birth.

The building is so clean that you could eat off their floors, although you are not allowed to eat in any other room but the conference room, for sanitary purposes. Lol!

Prolacta even has their own reverse osmosis water filtration system that they use just to clean any instruments that their products touch. They don’t add any water to their breast milk but they wanted to be sure everything is sanitary so they built their own water filtration system to ensure it. That’s pretty impressive!

The labs themselves far surpass any other science lab I have been to- and I have been to many as a career science teacher who takes a chemical engineering class each summer in various pharmaceutical companies on the east coast. The procedures in place and methods they use to guarantee that their donated breast milk is not only free from bacteria and viruses, but is also completely unsullied by anything from the lab, is downright amazing!

All employees who handle breast milk or other materials used in their products must be fully covered in gowns, gloves and masks. They look more like Hazmat inspectors than scientists working on human milk, but you can be sure that nothing is getting past those suits.

All labs are kept at a very cold temperature so that the milk remains stable. Because of this, many of the employees walking around in the lab areas are wearing snowsuits and winter gloves under their gowns. This is to ensure the quality of all of their human milk products.

What I also thought was incredible was how the coolers of breast milk are handled once they arrive. Each cooler is put in a window that is sealed on both sides and only one side can be opened at a time. This ensures that any outside dust or particles (but I did not see ANY- ANYWHERE!) cannot get sucked into the lab due to a draft or wind tunnel, and it also keeps the temperature at a constant refrigeration temperature. Once a mother’s cooler enters the lab side, a sample is taken from EACH cooler and tested for various diseases, bacteria, and viruses. EACH cooler of milk from EACH mother is also tested for opiates, tobacco, and a number of other substances that a mother could have in her system. They call this type of milk “adulterated” and they will not use ANY milk if any of those substances are found in the breast milk. I explained a lot of this earlier but it’s so impressive that I had to mention it again.

Each conference room and science lab has photos of babies hanging up and many rooms are named after babies that were successful and thrived because of using either Prolacta’s donor milk or a product made from Prolacta’s donor milk. It was beautiful to see so many success stories hanging up and I am sure that this motivates the employees each and every day.

Our tour ended with a Q & A session over lunch after a brief presentation from Scott Elster (CEO of Prolata Bioscience). He is pretty entertaining!

A shuttle took us back to our hotel where we had a few hours to rest before our networking dinner. It was nice to be able to sit and have some casual conversation with so many people who share the same goals and who feel just as much of a drive to help premature babies thrive.

Prolacta Bioscience is also participating in some very cutting edge scientific studies at the moment- looking into how human milk and it’s products can help with other diseases and disorders afflicting all types of children and not just premature babies.

One such study is in full-term babies diagnosed with single ventricle physiology (sometimes called a “single ventricle defect” or “single ventricle anomaly”). This is a disease where the babies functionally have only one heart ventricle (most of us have two). Typically these babies require corrective surgery within the first week or so of life. These babies are similar to premature babies in part because their heart condition renders them unable to take in large amounts of fluid, so feeding them sufficiently enough to allow them to grow is a challenge. This study is investigating whether the approach that has been proven successful in preemies of using a human milk-based fortifier modified to meet their particular needs will be able to deliver enough additional nutrition to allow these babies to grow and recover from their surgery faster than they currently do.

Prolacta is also conducting another exciting study in children between six months and five years old who require a bone marrow transplant. This study is testing whether the use of a human milk-based product to deliver a portion of their nutrition will have effects both on the bacterial population of their guts and on their immune systems, such that the rate of occurrence of a serious complication called graft-versus-host disease will be reduced.

I can’t wait to hear about these results and I wonder about the plethora of other medical issues that can be addressed by the science of human milk in the future. I’m sure that the scientists at Prolacta Bioscience are already brainstorming about it!

Well, I will finish with once again saying how impressed I was with Prolacta Bioscience and I feel honored that I was invited to participate in their Education Day and Facility Tour.

They even left a gift for me in my hotel room! And look at my view!

For more information on Prolacta’s cutting edge research in the field of human milk and to learn more about their donor milk program and products, please visit http://www.prolacta.com.

Click HERE to watch an exclusive “Behind-The-Scenes” video about Prolacta’s state-of-the-art human milk processing facility.

I hope I”m invited back for another event in the future!

I am once again proud to be a member of The Morgan Leary Vaughan Fund’s Board of Directors because today we sponsored our second education lecture at UConn Health in Farmington, Connecticut entitled “Influence of Gut Bacteria and Human Milk on Neonatal NEC”, as part of their Pediatric Translational Research Seminar Series.

Today’s lecture featured two of our Scientific Advisory Board members: presenter Dr. Michael Caplan and host Dr. Adam Matson. Stephanie Vaughan (President and Co-founder of The Morgan Leary Vaughan Fund) gave a heartfelt introduction into why she started The Morgan Leary Vaughn Fund and how Necrotizing Enterocolitis (NEC) has affected her family since her twins were born prematurely six years ago. You can read Stephanie’s story HERE.

Stephanie’s introduction was followed by Dr. Michael Caplan’s educational (and entertaining!) lecture on how human milk and probiotics may be helping to reduce the amount of premature babies afflicted with NEC.

In premature infants, breast milk feeding is associated with reduced infections and inflammatory diseases such as Necrotizing enterocolitis. NEC is a very serious disease where the intestinal tissue is injured or begins to die off and then a perforation occurs that allows bacteria and waste products to enter a baby’s blood stream. This very often leads to surgery requiring sections of the bowel to be removed and in many cases (about 40%) can lead to death. As more and more babies are surviving births at earlier gestations we must take a larger look into how to prevent this devastating disease and give our future premature babies a better chance at survival.

Dr. Caplan took us through the history of NEC and some of the original studies regarding different theories on what causes NEC and some ways it was treated in the past. He then showed us evidence from various clinical studies on how human milk diets and exclusive human milk diets (including fortifiers made from human milk) are showing some promise reducing the number of cases of NEC in premature babies. Dr. Caplan also showed us some studies on how probiotics are influencing the number of cases of NEC, but he was very careful not to endorse any particular strand or combination of probiotics as they all can have negative side effects because the physiology of each and every baby is very different.

Dr. Caplan endured quite a trip after canceled flights and long Uber rides to get to us and we are very thankful he came. He even showed up with a smile!

Below are a few of Dr. Caplan’s slides for you to view so that you get a feel of what was being discussed.

The Morgan Leary Vaughan Fund was proud to sponsor today’s event at UConn Health and we look forward to future collaborations.

The Morgan Leary Vaughan Fund (Morgan’s Fund) is an all-volunteer, public charity dedicated to Necrotizing Enterocolitis (NEC). Our mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately cure NEC.

Please stop back and visit www.micropreemie.net and morgansfund.org to see what events are coming up next and please share with anyone who may find this valuable.

Thank you for your support!

Below is a guest post by preemie mom and writer/blogger Carrie Willard.

It’s been a busy year and a while since I shared a guest blog post and I’m so excited to share this one because I admire Carrie for many reasons.

I hope you enjoy it.

“My seventh child was a preemie. Unlike my first seven pregnancies and births, which were uneventful and natural, this one was traumatic right from the start. We experienced multiple threatened miscarriages, bleeding and finally a rupture of membranes (PPROM) at 21 weeks. There were weeks of bed rest and hospitalizations, culminating in an emergent C-section and 11 week NICU stay for my little one.

My son is now 2 and thriving. I’m finally healing from the anxiety and fear I felt during that time, and feeling like my old self. Only, I’m different. My preemie taught me a few things.

One – It’s ok to do nothing.

I’ve always been a productive person who struggled to sit still. Visiting my tiny baby in NICU was an exercise in patience and stillness. It took nurses up to 45 minutes, sometimes longer if they were busy, to untangle my son’s leads and place him down the front of my shirt for kangaroo care. Then I dare not move lest his alarms begin blaring. Sitting and holding my son and bonding with him, giving him the gift of my presence and savoring his, was the most important thing I did all day, though it looked like nothing.

Two – Boundaries are good.

I gained a new appreciation for boundaries as I watched the NICU nurses carefully strap my sweet-potato sized newborn into a “snuggly” in his isolette, keeping him still and giving him a feeling of stability and safety. As his tiny legs kicked against the boundaries and found a wall of resistance, he began to learn what was him, and what was not him. The locked doors of the NICU, visitor rules and the hand-washing rituals also provided boundaries for well-being of its inhabitants.

Three – Patience – a virtue learned through adversity.

The mom of a preemie is told no over and over again. No, you can’t get out of bed. No, you can’t see your baby yet. No, you can’t hold your baby yet. No, you can’t put the baby to your breast. Those final days and weeks as your preemie looks like a “normal” full-term newborn are torturous. Your longing to have your baby home is palpable, but it’s not safe for your child to leave the hospital yet. Just when I thought I could wait no longer, I got a fresh length of patience handed to me, like a few more feet of rope.

Four – it’s ok to need help.

Early on in our NICU journey, recovering from a C-section, dizzy, exhausted and in pain, I would arrive into the NICU and collapse into the nearest nurse’s arms in a cascade of tears. It’s unlike me to show emotion in public, so this was not normal behavior for me. Struggling to bear up doesn’t mean you’re not strong. It means you need help. And that’s ok. Without the help of my husband, my older children, my friends, family and worship community, I wouldn’t have survived the experience as well as I did.

Five – Let go of unrealistic expectations and just do your best.

One of the most difficult things I had to accept about my son’s birth was the fact that he needed supplemental formula to gain weight. As a die-hard lactivist and former breastfeeding counselor, I knew what I was doing when it came to breastfeeding. My body may have betrayed my son by not keeping him in my womb for 40 weeks, but by golly I was going to nurse my baby! After a difficult period in which I experienced hot anger, shame and grief, I accepted a new normal. When I decided it was ok to give my son formula because he needed it, I felt peace. I used a Lact-Aid supplement to protect my milk supply and so my son would not develop a preference for bottles. (And I’m happy to report that he is still nursing at 2, and is long weaned from supplemental formula, something that makes me very proud!)

And finally, I come to the sixth point: Mothering is not all about me.

I didn’t want to give birth prematurely. I didn’t want to have to leave my son day after day in the NICU. I didn’t want the nightmares, the anxiety, the post-traumatic stress, the intense shame, the anger, the interruption of bonding with my newborn, the formula, the grieving of normal. But I don’t get to choose. Mothering is about holding a child’s hand as they walk down their path. It’s not about me.”

Carrie Willard is a homeschooling mom of 7 curious kiddos. She encourages moms to make time for their passions, goals and dreams during the busy child-rearing years at http://www.CarrieWillard.com/maketimeforyou

Check her out online!

Thanks for reading.

Having a baby in the Neonatal Intensive Care Unit (NICU) is emotionally challenging on a regular day, but add the holidays into the equation and it might be too much to handle!

My daughter spent 121 days in the NICU following her micro preemie birth at 23 weeks gestation. Since then I have made it my mission to help other parents who are struggling through their journey with prematurity.

Many parents wonder how they can possibly get through the holiday season with their baby in the NICU and not at home with them.

Below are 8 ways to help you celebrate the winter holidays with your NICU baby:

1. Hand write your Christmas cards and use them as Thank You cards

Whether your baby is spending most hours in an isolette or crib, you will have plenty of time to write. This is a great opportunity for you to thank people for their kindness. Some might have dropped off food, done your dishes, babysat, or just left you a supportive message.

2. Decorate your baby’s isolette or crib

Hang some ornaments or a wreath (not real pine!) over the isolette/crib. You could also decorate with some garland and tape up a few holiday cards. Why not take a picture of your home Christmas tree or Menorah and tape that to the wall also?

3. Skype

You could arrange Skype sessions with your family so that they can see your baby on Christmas or Hanukkah. You may need permission from the NICU nurses to do it, but it might be fun to have your family sing Christmas carols to your baby or just wish your baby a Merry Christmas or Happy Hanukkah.

4. Read your favorite holiday classic story to your baby

Babies love to be read to and studies show that it helps their brains develop and relaxes them so that they grow faster. Who wouldn’t want their Mommy or Daddy to read them a holiday book? This will also help you feel more in the holiday spirit.

5. Decorate preemie sized onesies for your baby to wear

If you have children at home, go buy a few preemie sized onesies and a few fabric markers at Toys R Us and decorate the shirts. It’s a great way for siblings to give a gift to their new baby brother/sister and they will also feel included. If your baby can’t wear cloths yet, make them anyway so that your new outfit can be the first one they put on!

6. Open gifts

Bring a few of your baby’s gifts to the NICU on Christmas Eve/Morning or on each day of Hanukkah and open them! There is no reason why you can’t do that to keep with your holiday tradition.

7. Bring some cookies/dreidels/latkes for the NICU staff

Whether you just met the NICU staff or have known them for months- they are your baby’s parents when you can’t be there and they will be there for you too. Wouldn’t it be nice to share the giving season with them and bring them some cookies or something else that shows them how thankful you are for them? Plus, you will get to celebrate with them and participate in one of your holiday traditions.

8. Celebrate New Year’s at noon

Bring some party hats and noisemakers to the hospital but don’t blow them! Put them next to your baby in the isolette/crib and take some pictures. These photos will be cherished for years to come. Plus, they represent a new year full of possibilities and promise and that’s what all NICU parents need. Then do your own New Year’s Countdown at NOON!

This originally appeared on my Huffington Post Parents page: 

http://www.huffingtonpost.com/entry/8-ways-to-celebrate-the-holidays-in-the-nicu_us_5850b2f5e4b0320ed05a9993

(Joy’s 1st Christmas)

(Joy at 4 years old)