Sometimes prematurity brings with it unexpected challenges. That was the case in Saran's story, which is complicated and sometimes difficult to read. But miracles happen, and she has been kind enough to share the long road she walked in her prematurity journey. This is Pt. IV - you can find Pt. I here, Pt. II here, and Pt. III here.
While milk donations reduce the level of stress of not being able to adequately nourish my baby, I do worry and have concerns related to unscreened, untested and unpasteurized milk, which apart from the risk of virus contamination, may also carry potential bacteria from incorrect storage and transportation. Though initially hesitant and reluctant to accept donations through milk sharing, I am comforted by the faith and trust that these moms wouldn’t feed their babies anything that is harmful, and knowing that I’m not the only one who struggle with it every day. Besides, like many other moms, I don’t have the time and luxury to pick and choose- we have to feed our babies.
I cannot begin to tell you how moved I am by the number moms on milk share forums, as well as the social networking site, Facebook and HM4HB (Human Milk for Human Babies), who responded with kindness and generosity. Who graciously shared their milk with baby Elise, a baby of whom they know nothing about except for the fact that she’s a preemie with a heart condition and in desperate need of milk. There were moms who were willing to drive the distance to deliver milk to us, and moms who broke into the last stash of milk that they had saved for their baby and made sure we had a supply of milk for Elise.
I can’t begin to express how grateful I am for their acts of kindness. Whether from afar or right around the corner, these moms came together as a community to do one thing that our health insurance would not do, to provide the much needed nourishing milk for sick babies like Elise. As we counted our blessings in the ounces of milk donated from strangers, we received wonderful news that the Mother’s Milk Bank of San Jose would donate milk to Elise for 2 months.
In the quest for finding milk for my baby, I have learned that I am not the only mom who was denied coverage by their insurance, despite having a prescription. There are still many moms with babies as sick as Elise, who haven’t been as fortunate as us, and are still in need. Though I accept milk bank donations with gratitude, I can’t help but feel a tremendous amount of guilt and sadness. Every day, moms are turned away empty-handed, from milk banks nationwide, and are forced to turn to complete strangers for milk through informal milk sharing or settle for the very formula that their baby isn’t able to tolerate.
Sadness, anger, and frustration fills my heart when I see donors hounded by the multiple moms begging for a donation; these moms have to plead in desperation for someone to consider donating to their babies over other babies. Moms who donated so much to other babies that they run out of milk for their own child and become the ones desperately seeking milk from others. Moms that must heartbreakingly say no to returning moms seeking more milk. Moms that sacrificed some of the donated milk they received to help nourish another baby in need. And it goes on…
It is absolutely illogical for insurance companies to not cover it as it could save the health care system tons of money in cost savings. And it’s truly a shame that there aren’t any publicly funded milk banks to assist these desperate moms. And it’s truly a shame that the Kardashians get more public attention when an everyday crisis like this, that we face individually and as a community, gets little publicity, if any.
Elise is our greatest achievement. From pregnancy complications, the struggles we experienced in the NICU, to the obstacles we encountered in providing nourishment for Elise, these experiences have challenged and refined me in ways I never anticipated. It has made me more compassionate toward parents of premature babies, and even parents of full-term babies alike, who struggle to provide their babies with breast milk and must seek it from others, and more grateful for moms who give graciously. I am humbled, as we have found ourselves desperately in need of other people’s help.
As a way to express our appreciation and gratitude for all the moms who have selflessly shared their milk with our special premature baby Elise, my sister-in-law and I are seeking to establish a 501(c)(3) non-profit organization. Once established, the organization will assist families with their milk prescription costs, ensuring that each baby will receive the human breast milk they so desperately need. I am writing to you in hope that you can help us start our non -profit organization, so that we may begin our mission to make pasteurized and screened breast milk more accessible when medically needed.
No baby or child should ever be denied prescription milk. You can help by connecting us with the appropriate person/organization, who is experienced with forming a non-profit organization, grant writing, and funding, or donate to our worthy cause. We would love to become your sister non-profit organization, if you are interested or would consider a partnership with us. Any help you can give will tremendously make a huge difference in the lives of these children and their families.
Thank you for your support in helping us help parents nourish their babies.
Sometimes prematurity brings with it unexpected challenges. That was the case in Saran's story, which is complicated and sometimes difficult to read. But miracles happen, and she has been kind enough to share the long road she walked in her prematurity journey. This is Pt. III - you can find Pt. I here and Pt. II here.
Nutrition for premature infants is essential for survival, growth, and development. Breast milk provides enormous health benefits and is highly recommended for first 6 months of life. It’s considered the ideal nutrition, especially for premature infants, as it contain antibodies (aka immunoglobins), other proteins and immune cells for protection against bacteria, viruses and cellular debris.
When Elise was born she was bottle-fed with fortified breast milk, to keep caloric intake at its highest for faster weight gain and “catch up”. As a result of Elise’s difficulty in feeding from my breast, I pumped and produced milk for her for 20 weeks. Unfortunately, like other mothers in my situation, I wasn’t producing enough and have since stopped producing all together. This is common among many mothers of premature babies as they are often times ill themselves and making milk is difficult for them, or they start out with a good amount and are so stressed out with the condition of their baby that their milk supply suffers.
Human Milk Banking Association of North America (HMBANA) Milk Banks are non-profit organizations that provide screened and pasteurized milk to help babies survive and thrive. Ninety-five percent of their recipients are preterm and sick infants in the hospital, however other infants receiving service include: babies who are failing to thrive on formula; has life-threatening diseases or conditions; failing immune systems; from multiple births or adoption, whose mothers aren’t able to provide/produce enough milk of their own; and babies of mothers whose breast milk isn’t suitable for consumption, either because of disease or prescription medications that pass through the milk.
Like blood, breast milk is a bodily fluid and can transmit diseases such as HIV, syphilis and hepatitis, in addition to remnants of alcohol and drugs, as well as bacteria. Milk banks abide by strict guidelines developed by Association of North HMBANA and the Food and Drug Administration (FDA) to ensure donor milk is free of infectious disease and bacterial contamination. Prior to distribution, the milk must undergo processing that includes the multi step screening of the donor, including blood tests, donor tracking, pasteurization, testing and analysis of the milk. Related operational costs include rental of office space, purchase of bottles and caps, freezers, and employee payroll. Volunteers are utilized whenever possible to curb the costs.
Though banks do not charge for the milk itself, recipients are assessed a processing fee to cover the cost for screening, collection, processing, distribution of milk, and related overhead expenses. One ounce can feed a micro preemie in the neonatal intensive care unit (NICU) for a full day, where as a 3 month-old can drink anywhere from 20-40 ounces a day or more. At a steep price of $3-$5.50 an ounce, more than the cost of formula, parents are forced to consider other options such as buying milk online for less than half the price or informal/casual milk sharing.
While insurance companies are much more likely to cover the processing fees when billed through the hospital (e.g milk ordered for NICU brought through the pharmacy), they rarely cover donor milk for outpatients. Milk banks may offer some financial assistance or grant a donation based on necessity and financial criteria, however the banks must prioritize the smallest and the sickest babies due to a huge demand for milk.
In 2012, milk banks across the nation dispensed 2.5 million ounces of milk, an increase from 2.1 million ounces in 2011. While demands keep increasing, the milk banks supply continues to be critically low, largely due to more hospitals are beginning to rely on breast milk as standard of care for premature babies. The slowdown may also be attributed to the increase in informal/casual milk sharing due to the expensive cost for milk through the milk bank. Clearly, the fee for pasteurized donor milk in North America is a barrier to access for some and while HMBANA leaders are working behind the scenes to shape health reform laws so all insurance companies cover this medical expense, there are no immediate resources available to assist with prescription milk coverage.
Despite Elise’s medical need and a prescription to the milk bank, which costs over $2,000/month out of pocket, our insurance will not provide coverage. Though I searched for organizations that could provide financial assistance to cover the cost of milk, I got nowhere. At 6 months old, our baby is now 9.5 lbs and is generally mistaken as a 2 months old. In desperation and as a last resort I have had to turn to complete strangers for the milk donations.
Stay tuned for Pt. IV!
Would you like to share your prematurity story on the Graham's Foundation blog? Email email@example.com to find out how!
Sometimes prematurity is part of a larger framework of events happening to a family. That was the case in Saran's story, which is complicated and sometimes difficult to read. But miracles happen, and she has been kind enough to share the long road she walked in her prematurity journey. This is Pt. II - you can find Pt. I here.
In my second trimester, I began having preterm contractions and my cervix began to shorten. During my 30 week checkup, we were told our baby wasn't growing properly, with an intrauterine growth restriction (IUGR), and growing at less than the one percentile. Despite our best effort to stay optimistic and positive, my husband and I were terrified of losing another, especially this far along in pregnancy. At 34 weeks, I was induced in a tertiary level hospital, 70 miles away from home as our baby stopped growing.
Within 24 hours our baby girl Elise was born, all naturally in a room that was neither prepared for birthing, nor with a pre-arranged delivery team. It was the most painful and terrifying experience I ever had but hearing the sound of my baby crying brought my husband and I to joyful, relieving tears. Finally our long-awaited baby was here, and she was worth everything that we had painfully endured over the years prior. She was our second chance to life.
After she was born, I received the pathology report of my placenta- I was diagnosed with chronic histiocytic intervillositis (CHI), a condition in which the baby is seen as a foreign object and my body has an immunological reaction to terminate the pregnancy. We were told from my perinatologist that 80-90% of CHI pregnancies end in miscarriage or stillbirth, and babies that are viable may potentially have health problems. Unfortunately, this condition has no cure and the recurrence rate is as high as 90%, which may be the explanation for previous miscarriages. Elise may be the only baby I have, and this fills me with wistfulness and sadness as I often dream of birthing little siblings to grow up beside her; I will always treasure the pleasures and pains of pregnancy and I am so grateful for being blessed with the experience of growing a tiny life inside of me…at least for once in this lifetime.
I will always remember the complex emotions and indescribable gratitude I had when I first saw her. Baby Elise spent her first 3 weeks in the Neonatal Intensive Care Unit (NICU). She had 2 small ventricular septal defects (VSD) and a patent ductus arteriosus (PDA) significant in size. The PDA, which is an open fetal blood vessel that should’ve closed after birth, affects the ability to feed and breathe resulting in slow growth. When, 5 weeks later, it still had not closed, Elise, only a mere 4 lbs, was re-hospitalized in the NICU for intravenous Indocin, a medication that can close the ductus. The treatment was unsuccessful despite our high hopes. Two weeks later, we knew something was wrong when she stopped feeding and experienced greater difficulty breathing.
We took her to the Emergency Room. She was again admitted, this time for acute congestive heart failure (CHF) and failure to thrive, and subsequently required nasal gastric (NG) tube feeding for nearly 2 weeks. On January 11, 2013, at 3 and half months old, a team of UCSF cardiologists attempted to close Elise’s PDA via cardiac catherization. This procedure was unsuccessful, and her doctors intend to attempt another catherization, when she is a hearty 11 pounds, with heart surgery as a back-up plan should she take a turn for the worse.
While she was at UCSF, Elise caught a virus from her little roommate. After being home for 1 week, she was taken to the ER, where she tested positive for pneumonia and respiratory syncytial virus (RSV) resulting in hospitalization. During a follow-up visit with her cardiologist, we found out that Elise had fallen off the chart as her growth significantly slowed down. At just 5 months, and weighing 8.5 lbs, she needed an urgent heart surgery to ligate the PDA at UCSF on March 2, 2013 due to her failure to thrive. Unfortunately, she developed a chylous pleural effusion/ chylothorax as a result of her heart surgery, and subsequently needed another surgery one week later.
After spending 3 weeks in the hospital, she was finally able to return home with NG tube in place for feeding. In all, our preemie has spent over 9 weeks in the hospital. Despite what Elise has been through at such a tender age, she is a miraculous fighter.
However, our struggles continued even after Elise graduated from the NICU and was able to come home with us. Along with the struggles of being parents to a premature baby as first time parents, the mounting medical debt, and financial hardships as a result of losing an income, we were faced with issues related to insurance coverage for Elise’s nutrition. After several baby formula trial-periods later, we had learned Elise has a formula allergy that includes gastroesophageal reflux disease (GERD), and proctocolitis, a mild form of food protein induced enterocolitis (FPIES) that causes bleeding of the lower bowel due to sensitivity to cow’s milk protein. As a result of her medical necessities, she was given a prescription by her pediatrician to the milk bank.
Pt. III coming soon...
Would you like to share your prematurity story on the Graham's Foundation blog? Email firstname.lastname@example.org to find out how!
Sometimes prematurity is part of a larger framework of events happening to a family. That was the case in Saran's story, which is complicated and sometimes difficult to read. But miracles happen, and she has been kind enough to share the long road she walked in her prematurity journey. Note: This will be Pt. I in an ongoing series.
My family and I are Cambodian refugees who survived the genocidal atrocities committed by Pol Pot and the Khmer Rouge in the mid-70s. We were very fortunate to have made it out alive, while two million Cambodians and eighty percent of my immediate family brutally perished during Pol Pot's regime. In 1983 we were sponsored by a kind-hearted and generous Samaritan who brought us to Santa Rosa, CA. Thirty years later we still live in beautiful Sonoma County. Though my family was poor, my parents instilled honorable values; family, education, strong work ethic, and contributing to the community that helped us immigrate to the United States.
My husband and I are grade-school sweethearts; we met in 7th grade and married when we were in college. While on the path to completing our educational goals we moved away from our home and our friends, living in Washington and the Sacramento Valley, but always yearned to be closer to our family. After attending Dominican University of California, and obtaining Master's Degrees in Occupational Therapy in 2008, we reestablished our home in Santa Rosa where our happiest memories were made.
During our scholastic pursuance at Dominican University in San Rafael, my father was diagnosed with thyroid cancer. Kevin and I involved ourselves extensively in his care plan, travelling throughout the Bay Area for doctor’s appointments and the multiple treatments he received. We both worked while in school; balancing school and work, and the duty of caring for my ailing parent. My father continues to battle cancer, and due to the type and aggressiveness of it he is not a candidate for further medical treatment. We have had to turn to alternative medicine in hopes of prolonging his life. While his illness is a constant reminder of the fragility of life, it has reemphasized the meaning and value of family and community.
Several years ago, my husband and I wanted to grow our family and have a baby. We were so excited about the joy and love that a baby would bring to our family, especially our aging parents. Heartbreakingly, during our first pregnancy I was diagnosed with Grave’s Disease and needed radioactive treatment, and I lost our child. We tried again, but I lost my second pregnancy to a miscarriage. Despite the heartache and sadness we felt over our losses, our strong desire and determination to expand our family impelled us to try again. During my third pregnancy, my father-in-law was diagnosed with a rare tonsil cancer.
As Occupational Therapists at a skilled nursing facility, Kevin and I were the ones helping patients, families, and caregivers manage and cope with aging, illness, and disease. Never in a million years did we imagine that we would become the ones needing so much support. A few years of clinical skills and witnessing the pains and struggles of those inflicted by cancer did not prepare us in the slightest bit in caring for our cancer-ridden fathers. And like previous pregnancies, my third one ended in a miscarriage as well.
Despite a myriad of tests and consultations with a genetic counselor, we couldn't get a definitive answer as to why I kept losing our babies. During my fourth pregnancy, my father-in-law died unexpectedly and suddenly from his cancer though he had been given a clean bill of health just six months prior. He was a wonderful father and a caring physician and his death sent shockwaves throughout our family and the many lives that he had touched. When we thought the worst was over, we lost our fourth baby to another miscarriage and received grave news that my father’s cancer had metastasized to his lungs. Our world had crumbled upon us, and the happiness and hope we once felt slowly faded into oblivion. My husband fell into a deep depression over the loss of our four babies and his father. As torn as I was, into a million pieces, I grieved silently and remained strong for my family.
Then about one year later and unexpectedly, I became pregnant again. This time I was placed on bed rest during my fourth week. Though there was no guarantee/assurance that I would have a positive pregnancy outcome, I was relieved from work and my doctor started me on progesterone therapy and baby aspirin. A team of high-risk doctors closely monitored my pregnancy as I developed complications. During a routine ultrasound, our baby was found to have a single umbilical artery, requiring frequent monitoring.
Pt. II coming soon...
Would you like to share your prematurity story on the Graham's Foundation blog? Email email@example.com to find out how!
We're so excited to introduce Lorena Vassolo, one of the members of our amazing Parent Resources team. She's an experienced preemie parent whose daughter has endured many medical challenges faced by preemies. Here is Lorena's story in brief:
My daughter Malena Lola was born at 25 weeks gestation and weighed 1.6 lbs. She spent almost 8 months in the NICU at the Alberta Children's Hospital in Calgary, Canada. During this time I spent every day with my baby girl - I would arrive at the hospital very early in the morning and stay until my baby girl was asleep for the night. These were very challenging and long months, but I did my best to always stay positive and hopeful. During her hospitalization, Malena needed a PDA ligation surgery, ROP eye surgery and a tracheotomy. Once discharged, she needed to be on home oxygen and humidity. Nowadays she is almost 2 years old and is completely off oxygen. Her lungs are healthy and strong and she still has her temporary tracheotomy. She is thriving and we are waiting for her next and final surgery to remove the tracheotomy.
And here are tips that Lorena put together for parents of preemies who are coping with the challenges that come with a trach:
It can be very scary and upsetting when you first discuss the need for your baby to have a trach. It will be a hard decision and you will struggle with it, but do remember always that you are your baby's most valuable advocate and trust your instincts. Don't be afraid to question the doctors and ask all the questions you need. It is their obligation to answer all your questions and concerns before such a big decision. And also remember that as scary as it may be, a trach is a way to provide your baby with a comfortable airway and free your baby of being intubated. It will allow your baby to start feeding orally and thrive.
I remember having to tell myself that my baby girl was much more than just her trach, and I made a decision not to let her trach define her. I also made the decision to see the trach as a positive step in her development and I always made sure to avoid any negative comments regarding the trach so that my baby girl would never feel a negative vibe towards her or her trach.
Babies are incredibly strong and resilient. Babies get used to things immediately because that is all they know, so follow their lead and adjust. Be flexible and adaptable, that will help you during the emotional roller coaster ride that is having your preemie baby in the NICU. Always stay positive, hopeful and use your voice to advocate for your baby when needed.
Doctors are human beings just like the rest of us, and it is alright to question them if necessary.
Once your baby has a trach, try to use your time in the hospital - watch, learn and practice. The time in the hospital before you get to go home gives you a great opportunity to become totally familiar and comfortable with your baby's trach. I found that the RTs (Respiratory Technicians) were great sources of information and could teach me a great deal. Also the nurses who are always around can also offer you tips and watch while you practice trach care, trach changes, etc.
Don't wait to learn it all during the trach training course. Take advantage of every moment you are at the hospital with your baby to do as much as you can by yourself. Tell the nurses and RTs that you want to learn how to do everything and make them teach you and allow you to try to do things on your own.
This will make you feel more comfortable with your baby's new trach and make you feel empowered to take care of your baby.
Make sure you become very familiar with the equipment and the trach supplies you will be needing at home. Start thinking about preparing your emergency kit bag, as well as your going out / diaper bag.
Make sure you have a stroller that can accommodate all the equipment that you will need to take with you when your baby goes out (i.e. suction machine, emergency kit, oxygen tanks, diaper bag, etc)
You will also be hiring nurses or caregivers to help you take care of your baby with a trach at home. Make sure you are involved in the selection process if possible to ensure you find the right fit for you and your family. Remember, this person will be in your home taking care of your baby every day and will become a part of your lives so make sure you have the right person.
Be clear on your standards and expectations, give them a detailed job description and train them to your liking. If you are not happy with the person do not hesitate to change them. Your baby's safety and happiness is most important, as well as your trust in this person.
Once your baby is home, make sure you spend time supervising and observing the nurse / caregiver to make sure they are doing things up to your standards. Make sure they have proper trach care training as well as valid Infant CPR Training.
During this time, the hospital will book numerous appointments for your baby. Feel free to meet with your baby's main doctor to discuss which appointments are most important and which can wait. Many times the hospital books the standard appointments without taking into account each baby's individual needs. In my experience, I was able to significantly reduce the number of appointments post discharge, that way we weren't spending each week at the hospital again.
And lastly, remember to enjoy each moment with your baby no matter what challenges come your way. Our babies are tiny mighty miracles that fight hard to live each day, and they inspire us to be strong and remind us just how precious life is. And even though your experience may not be as you had imagined or hoped, it is a true blessing to be chosen to be a preemie parent. Always remember, your baby is perfect just the way he or she is, the trach is just a part of your baby but it does not have to define him or her.
NOTE - I highly recommend joining the facebook group MOTB - Moms of Trach Babies - it welcomes all parents and family members of trach babies and it is a great source of knowledge and support. I am a member and they have been fantastic!
Feel free to check out my blog with my baby girl's journey with a trach at www.malenalola.com
Today, we wanted to share Antonia's story - she reached out to us to tell us her story of birthing at home at 32 weeks and everything that followed as her daughter Freya worked hard to come home. If you'd like to share your family's prematurity story along with a photo, please email firstname.lastname@example.org.
I ended up giving birth at home, pretty much alone (my husband was downstairs) at 32 weeks (in England). This was not how we had planned it. But so it was that Freya arrived at about 10:30am on Saturday 11th June, 2011. We called an ambulance and were transported to hospital. And so began Freya’s stay in the Special Care Baby Unit.
A midwife and a consultant met the ambulance and took Freya from me. I remember they were reassuring but I felt awful as they took her off me. I guess that motherly instinct had kicked in! The whole ambulance ride I was asking why Freya wasn’t sucking when I put her to my breast. It turns out that at 32 weeks a baby can’t suck – not something you take note of when pregnant!
So I was kept in until the Monday and told to visit Freya whenever I wanted. On the Sunday or it may even have been Saturday afternoon I was asked if I intended to express or breast feed and given a hospital grade pump to express with. I was advised to go and see Freya whenever I wanted as it would help my milk. I hadn’t decided either way prior to giving birth so I felt a bit shocked I recall and thinking ‘wow I’ve only just given birth early and I have to make these decisions!?’
When I was pregnant I felt very low, I would say almost depressed and was worried how I’d bond. So I went through so many thoughts when Freya was in the SCBU. It must be my fault for not feeling happy. Had I done something wrong? I’d been told to relax. I even knew at the time these feelings were normal but it didn’t make me feel any better.
So Freya started off I would say poorly. Not as poorly as some. And the thing that scared me the most was that I know of 2 babies born at 30 weeks, one was very ill and the other died. So I didn’t appreciate that 2 weeks can make a difference & those babies had issues already. I was just panicking massively. Freya started off having a CPAP mask. She also had jaundice. And then I think in the first week they called us to say they needed to put a line in. It turned out she had ‘gloopy blood’ and needed ‘Total Parental Nutrition’ or ‘TPN’. She also had caffeine.
During this time my parents had also returned home, several hours drive away and were worrying if they didn’t hear anything. So my husband took on the role of ‘Communications Director’ for our household. He emailed family daily with what was going on and pictures. And when Freya was weighed weekly he included those. Another thing I wasn’t aware of is that it’s normal for babies to drop in weight initially.
After her initial assistance she started to improve and I think on the second week was taken off the cpap mask. She was actually pulling it off herself so when the nurses removed it, a doctor questioned it and accepted the nurse’s response that it was doing her more harm in frustration than good.
About a week later she moved to the next room off most of the monitors and just having a heated cot. She must have been in there for a few weeks as she came home at 23 days.
One of the most difficult decisions for me came at day 7 when I was discharged from the midwife and she advised me to stop expressing milk as I was finding it hard. That ran out at about 10 days. I sat and spoke to the consultant looking after Freya and just cried. The following week Freya started sucking and had her first bottle.
After 3 weeks, on the Sunday night we were driving home and my husband sighed. He said ‘Freya please be a good girl and come home soon for Daddy, I don’t want to go to work tomorrow’. I rang the SCBU as I did every morning, the next day for an update. They said ‘she’s pulled her feeding tube out again’. I apologised and asked when it was going back in. They had previously said when she took all her bottles over 24 hours they’d discharge her and it hadn’t been 24 hours. They said ‘the consultant is looking at her now and is probably going to discharge her, as she obviously doesn’t need the feeding tube’. I rang my husband and said ‘I have some good news. Freya’s answered her Daddy’s prayers.’ I did include an in jest bad news but I can’t even remember what it was!
Between us we hurriedly packed separately and went into hospital and then had to get 1 car home. We spent a night in the parent flat as it was called, so if we had any questions or the staff needed to do anything we/they could. The next day we said an excited goodbye as we left the place that had been our home for 23 days and took Freya to her new home.
Freya is now a happy and healthy 20 month old. I took her to say goodbye to the staff 6 months ago as we moved to Luxembourg. I can never thank them enough for looking after our little girl. However, you can probably pick up from my writing, I was massively unprepared for our journey. One of the parents mentioned was a massive support and help to me but I think I would have really struggled had I not had her. There were times when I needed to talk to someone other than my husband but who just knew. And she was that person.
Who did you find yourself leaning on in or out of the NICU?
It’s simply a fact that premature birth turns a family's world upside down and tests the limits of their resilience. Parents of preemies face challenges that most people can't even imagine.
So it's only natural that your baby's early arrival can leave you feeling stressed out and frightened. Some of your fear may fade as you learn about and participate in your preemie's care, but you’ll likely experience a range of emotions throughout the prematurity journey. Here are some tips that can help you cope:
● Your preemie is just where he or she needs to be right now. Try to draw strength from that fact. The Neonatal Intensive Care Unit (NICU) is staffed by specially trained healthcare professionals who understand the special needs of premature babies.
● As overwhelming as the sights, sounds, and rhythm of the NICU can be, there are still many opportunities for bonding. If you are unable to hold your baby, you can read and sing, place an object infused with your scent in your baby's isolette, or simply participate in routine care. Even holding your baby's hand can be reassuring for both of you.
● Don't blame yourself. Many parents ask themselves if they are somehow to blame for their baby's premature birth, but it's a question that usually has no satisfying answer.
● Having an infant in the NICU is exhausting! Being there for your preemie means taking care of yourself, too. Eat and sleep. Don't sweat the small stuff at home. And if you're feeling depressed, talk to a professional.
Sometimes what weighs most heavily on parents of preemies is money. Specialist care in and out of the NICU can be expensive, and for those without insurance, difficult to handle. If you have insurance, make sure you understand what treatments will be covered. Parents without insurance or with limited insurance can apply for Medicaid or Social Security insurance programs. There are also services such as RxAssist that help preemie parents find patient assistance programs for medications not covered by insurance.
When parents of preemies have other children, professional responsibilities, or other duties, they may feel pulled in multiple directions. The stress of prematurity can also have an impact on relationships. Remember, the people in the NICU are taking the best possible care of your preemie when you can't be there. Ask for help and let others shoulder some of your responsibilities for a while.
Eventually the NICU can start to feel like a home away from home. Until then, try to adapt to your family’s new situation by staying grounded in the moment. Sometimes that may mean focusing exclusively on what is happening in the NICU – holding, feeding, and changing your baby. Other times, staying grounded may mean taking a few hours to address your own needs. You and your family will develop your own routines as time passes. Adjust to the realities of premature birth as slowly as you need to.
Sunday, March 10 is the second annual Parents of Preemies Day. This year, there will be local events in nine cities, as well as our first virtual event, a Twitter chat we're co-hosting with Alexa Stevenson, author of Half Baked, and Kasey Mathews, author of Preemie. Bloggers and the media have stepped up to help us spread the word - Parents of Preemies Day has been even been spotted on Parenting.com and Babble. And parents of babies in NICUs around the country will walk into parents' lounges where Parents of Preemies Day supporters have laid out spreads of snacks and other goodies.
So many parents and supporters have helped us spread the word - by blogging, sharing their stories on our Facebook page, and pledging to do something nice for the parents at their local NICUs on the big day. Blogger and preemie mom Rachel Cordeiro has done so much to help us share Parents of Preemies Day with moms and dads - and we wanted to share one of her beautiful poems here:
Each Day Too Long
Every passing moment Each gaze upon your face Longing to comfort you Within my sweet embrace The pain rips through my heart Almost breaking it in two Hoping, waiting, pleading— I beg to hold you soon But time passes slowly Stopping. Standing. Still. Someday I will hold you But until? Each day too long
Faithfully we visit We come both day and night Watching in amazement As you fight for your life! Days to weeks, weeks to months The calendar’s a blur Doctors share statistics “Her future is unsure” Without a doubt we know Praying. Believing. Still. Someday you’ll prove them wrong But until? Each day too long
Then our prayers were answered The special day arrived Bringing you home at last No “roller-coaster-ride"! Deep inside we wondered What struggles lie ahead? Had we known what we’d face Fears would have turned to dread Yes, there have been struggles Adjusting. Learning. Still. But each moment you’re home And until? No day too long
My joy turns to sorrow And quietly I weep For each precious baby Who gently went to sleep My heart breaks for parents Who know the greatest pain Arms aching with longing To hold their child again Instead, dreams lie shattered Grieving. Hurting. Still. For every moment gone. And until? Each day too long
As our lives continue Fellow parents we’ll meet Some stories already finished Others not quite complete No statistics matching Similar—not the same As we share our journey We bear each other’s pain This day’s for all of us. Remembering. Celebrating. Still. Our courage yet remains And will. Each day too long.
Rachel Cordeiro blogs at This Journey Our Life and has three beautiful children. She said "This poem is dedicated to every parent of a preemie. Whether you were blessed to bring your baby home, or your heart still aches with grief because you couldn’t; whether you’ve walked the NICU journey in years past or are currently trudging along its path. Today—every day—you’re celebrated."
Looking to get healthy and fit this coming new year? Graham’s Foundation needs you!!! It’s easy…just choose an event you would like to participate in (location and distance of your choice – we can help you find the perfect one), and we will give you tips on fundraising as well as assist you with training for your event; all while you raise awareness for prematurity and funds for Graham’s Foundation. What better time than the start of the new year to make the choice of getting (and staying) healthy while also giving back to the preemie community and helping other families get through their journey?
Support is a mainstay of Graham’s and it will continue to support you in your training. A virtual support group is being formed and will be with you every step of the way. The group will have the opportunity to learn goal setting strategies and racing tips in addition to being able to pose questions, and share struggles, accomplishments and inspiration to your virtual teammates.
With your participation we can reach even more families in need this coming year. There is no required amount of money you need to raise for your event; however here is the breakdown of how your fundraising efforts will be distributed:
$50 = 1 Graham’s Foundation care package
$300 = 10 Graham’s Foundation care packages
$500 = 20 Graham’s Foundation care packages
This is your opportunity to give hope, be resilient, and prove miracles do happen!
If we have peaked your interest, made your heart pump a little faster, or just got you thinking this may be something you want to look into further, please contact Andrea Silva at email@example.com.
“What lies behind us and what lies before us are tiny matters…compared to what lies within us”
– Ralph Waldo Emerson
permalink of post: http://grahamsfoundation.org/pc_url_28140769
Graham's Foundation is a not-for-profit organization recognized as tax-exempt under Internal Revenue Code section 501(c)(3). Our mission is to provide support to parents of premature babies. EIN 26-2880389