An Open Letter, Because this Happens Too Often to Too Many Mothers

Greetings Nurse XXXX,

After today’s visit it has occurred to me that the encounter I experienced today needs to be addressed.
At approximately 10:30 this morning, about 15 minutes into our visit you threatened to call CPS and promised to admit Aiden if he hadn’t gained weight by our next visit. Although I immediately called your statements threatening and made it clear how inappropriate they were I feel that I must clarify why the entire visit was inappropriate and unprofessional.
I am accustomed to meeting systemic bias when coming into the Peds speciality clinic with Aiden but I never imagined you would employ the scare tactics you attempted to use on me in order to coerce me into the path of treatment you felt was best. Being his mother and main care provider I felt that it’s been made clear that his wellbeing is of the utmost importance to me. Your desire to treat him with the replacement of a g-tube I feel is short sighted and does not consider the entire picture of his health and wellbeing, rather it provides a temporary fix for part of his health. As his mother I expect to be able to weigh in on these decisions. Your words today disempowered me as his caregiver and attempted to ignore the expertise I hold as his mother.
As you stated in our encounter, you are aware that at large, CPS is seen as a threat to families, this leads me to wonder why you would not clarify your statements to me when I made you aware of my initial discomfort at the thought. In your words CPS social workers do what they can to keep families together but I am unclear about why we would be discussing the cohesiveness of my family at a GI visit. At present my son is fed, clothed, and cared for by myself and his father without the assistance of any public assistance programs outside of his insurance. The implication here is that I as his mother am at fault for his failure to thrive, that I am in some way negligent and must be “supported” in order for his health to improve. I vehemently disagree with this thought.
At his last visit I asked for a series of tests to be done given family history and his slow growth. This request was denied. Today after I pushed back on your CPS statement, his tests were ordered. This is an especially important point to consider being that directly before, it was implied that I was at fault for his growth. It was only after I demonstrated my ability to advocate for myself that my initial request was honored. I heard you say that you were willing to screen him for celiac disease and hyperthyroidism but no mention was made of diabetes screening. I informed you he has two Young 1st cousins recently diagnosed with childhood diabetes. Was this screening left off because you do not have the clearance to order such a screen? I have called the pediatricians office already (after you refused to screen him initially) and got no response or follow up from his office either.
Given I felt unsafe and threatened I conceded to the other treatments given to me as options for Aiden out of fear and panic. The medication that was prescribed affects mood which leads me to believe that there is a neurological component to the medications interactions with the body. This concerns me, Aiden is still young and developing neurologically, his development as a young man in Baltimore City is at the forefront of my mind. I’m interested in any links you may have to research about the long term effects of PERIACTIN. I of course, will be researching myself. I intend on getting his bloodwork done as soon as his cold resolves. It is in your system that he was seen LAST week for an upper respiratory infection. He had a temperature that he developed over the weekend and I was not comfortable with getting his blood drawn while he is under the weather. As soon as his temperature stabilizes we will get his bloodwork done so it can be processed and tested. His father and I both want to discuss further the endoscopy, as I stated before I conceded to your suggestions based on the power dynamic in play at the time of the appointment but would like more information about risks before moving forward.
Aiden had a Nissen placed upon discharge from the PICU, it occurred to me as I processed our encounter, that the nissen may have a role in how much Aiden can tolerate to eat. Upon inspecting the notes of his visit today I noticed that individually his weight and height are on chart for his age it is his BMI that is below and falling. As his mother, I know that when he grows he first grows up and then out. If anyone were to ask my opinion of my sons growth I would venture to say that we are seeing the beginning of his current growth spurt which would account for his BMI. I am not a doctor but I am Aidens mom which makes me an expert in Aiden. Regardless of the bias you and your staff hold towards me, it must be acknowledged that I have the closest eye on his health.
Before bias is denied, let us first acknowledge that bias occurs in structural ways towards people that present to be in a population that is the recipient of bias. Although you may not feel that biased interactions take place in the office, they in fact do. The WIC discussion that we have every visit is one example. The assumption is that Aiden is not growing because we cannot afford food thus the recommendation to enroll in WIC although we have spoken repeatedly and at length about why WIC is not an option.
The work that I do is to advocate and stand for mothers in the position I was placed in today. I do not take my work lightly and I do not take the fact that I once again became my own client today. It is disheartening that the place that is supposed to be an ally in Aiden’s wellbeing threatened so cavalierly to do the opposite today. Research is showing us over and over again how provider bias and institutional systems of racism and classism are proving fatal for black mothers, children, and families. I hope that you can see and accept my concerns as examples of how bias plays out to rip families apart within the medical systems and I hope we can get back on track with addressing Aidens medical needs without the insistence that his parents are lacking or in some way unfit. I lost a lot of trust today and will hopefully be better supported and represented at our upcoming visit next month. I hope this message finds you well.
Best,
Ana

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Ana Temple Rodney is Aiden’s Mom. She is an author, doula, yoga instructor, Reiki master, and mom advocate based in Baltimore, Maryland. Ana is the Founder of The Rising Mama Brand and MOMCares initiative. The Rising Mama is a brand that serves mothers and families in the Baltimore area through Reiki energy healing services, body positive yoga instruction, and supportive doula services.
The MOM Cares initiative is a program that offers free postpartum doula services to mothers in the NICU that are under supported, facing financial stressors, and women of color. Services include transportation, meals, bedside advocacy, mindful wellness opportunities for mom, baby sitting for older siblings, and self care opportunities.
Find us on the web at
Facebook: https://www.facebook.com/therisingmama/
https://www.facebook.com/MOMCares-1824911787813252/
Instagram: @the_rising_mama
@MOMCares_baltimore

twitter @momcares_balt
Youtube: https://www.youtube.com/channel/UC4OMGwkXTqc-BgyH92Ql39A
Www.therisingmomcares.com

http://www.therisingmomcares.com

Prematurity Awareness Month: Diana and Khaliel

MOMCares is humbled to have received the stories of so many moms to observe Prematurity Awareness Month. Today we give honor to Diana and Khaliel. Diana is an artist and poet based out of Maryland.
Never in a million years will I have ever thought blue was going to be my favorite color. I birth pink in 2007 and I figured ….that was it for me. Especially intertwining with ladies, I never thought I will be having my second baby. Before he was planted in me, I remember I was in a domestic violence world with my enemy -who I once shared my heart with. I didn’t dare to restart another family when escape was my plan B. But something told me to go check and see if everything was ok with me. When the doctor told me I was 3 months I cried. I cried of sadness because I didn’t want my baby to share the same pain as I did in this relationship. I already had to protect baby number 1. I was numb and against the crazy plan in my head but my body wanted freedom so I made my way to the abortion clinic….or what I thought was an abortion clinic. Murder videos and sad songs was told as I sat on the couch and my soul started to cry. I knew I was a disappointment in God’s eyes. A lady came up to me and took me to the room,where she place a blue sheet over me and ask me if I wanted to hear the heartbeat. This was odd. But immediately I said “yes please”. That was the first time I heard him. I just reached 4 months. She looked at me and handed me a blue knitted hat and told me “my spirit says you’re having a boy”. I started crying. She then took me into another room and stated this was not an abortion clinic but rather a program that portray as an abortion clinic to help young women. She helped me. She took my daughter, my unborn son and I to a shelter and saved us. One month later, going into the doctor office for a regular check up was when I received the dreaded news. Doc told me “your son has trisomy 18” he was born with an extra chromosome in the wrong place. Of course I didn’t know what any of that meant.  He then said “I’m sorry but he won’t survive and it’s a rare case he might be born alive. “A rare case”. Those words slice through my lungs and I couldn’t breathe on the inside. However, I smiled on the outside and said, “I don’t want an abortion…I’ll just see what God has planned”. I walked out numb. ..I don’t even remember walking out the doctor office. I sat on a bench by a park. Quietly. I look at the kids playing and I realize…..I won’t have that kind of memory of my son. I cried. Uncontrollably. In public. By the park. I got up after an hour or so. I wiped my tears and I went to the shelter to my daughter. Each month I told myself he will live. Each month I rubbed my belly and loved him. Each month I prayed and created a deeper bond. I didn’t do a baby shower. I didn’t buy any baby clothes. I told Khaliel he can stay inside a long as he likes. I went through emotions after emotions. I kept wondering why did I get pregnant. Why did I allow him to force himself on me.  I went from Happy to depress..shit there was times I didnt want to live. I blamed myself. I blamed the man who put the seed in me. I didn’t want to grow this baby yet I was grateful and excited..43weeks later and it was overdue for him. Doctor had to induce me. It was time to meet fate. There were about 5 doctors in the room looking at me. They had a metal plate in me to place on Khaliel’s head due to his heartbeat dropping the pain was excruciating but I wanted to sacrifice myself for him. I didn’t want a cesarean. I wanted to push him, feel him. Even if it was going to be my last time. He came out with just 3 pushes…..and it was silent for what seem like forever but only for 30 secs……he cried. He cried so loud and so did I. Everyone was clapping and crying. Khaliel was alive. My baby boy beat the odds. After that, reality settled in. He was put on a breathing and feeding tube. I couldn’t nurse him. I couldn’t hold him due to the wires he was hooked up on. I was told he was never going to walk, run, dance, swallow, eat or barely talk on his own. Day in and day out I gave him my all. All of my energy, all of my love. I told carmen every hospital story of when Khaliel and I was together.  She seem excited just at 2yro. He was born January 30th. He passed the 99.1% of still birth and lived until March 28th where he gave his last breathe in a nurse’s arm. They called me and gave me the news over the phone. I screamed and ran as fast as I could. Being in Nyc means there was alot of trains. I got there within 45 minutes and saw him on the hospital bed. Not crying, not hurting and no wires. I smiled as I cried. He was free. He was ok now. I carried him without wires for the first time and I walked around singing lullabies. I thank God so much that day. He showed a miracle. A baby boy who survived the odds and left in the most peaceful state. It could have been worse. But it was joyous.

Going Home: Prematurity Awareness Month

I fantasized about taking Aiden home everyday we were in NICU care. Going home signified for me the end of the struggle. Everything would be alright if we could just get home. I would be able to be in charge of my sons care and we would be healthy and happy.

Unfortunately, discharge came with oxygen support, 3 inhalers, weekly appointments with 3 different specialists, in home visits, and the unsuspecting anxiety around not having machines monitoring him constantly. Suddenly, I felt overwhelmed and self conscious about being his primary care giver. With all my fantasies about leaving the NICU, getting home and home life didn’t really cross my mind until we got there. I initially felt like I had traded one prison for another as Aiden was dependent on oxygen support and only had four tanks for outside use a month. That made our visits to the doctors, errands, and visits to family impossibly anxiety inducing. We were on a clock, any hold up in the plan or our day outside immediately sent me into an internal frenzy, how long would this set us back? Would the oxygen last until we got home to our home unit? What would we have to cut out of our schedule to compensate for the missed time? Nevemind the constant faint terror I felt because there were suddenly no machines to alert me that something was wrong. I had to dial into Aiden in a different way. Our entire day was marked with medications and feedings with a nap or two worked in. Once he came home I began getting almost immediate pressure to go back to work but the journey towards Aidens healing had only begun. I made a decision to remain with him as I had in the NICU which was a difficult decision with financial repercussions I am still navigating. I set clear timelines for Aidens interventions at home. By age 1 he was without oxygen support, we also said goodbye to his home nurse and said hello to an occupational therapist to accompany his physical therapist. Aiden was prescribed his medications on an “as needed” basis by the time he was 1 and a half. By 1.5, Aiden had said goodbye to his pulmonologist and little by little we widdled away at his support. At 4, I have realized that his journey is just that a journey, and there may be a need for some type of support until he’s older but I’ve gotten a handle of that idea. It’s taken me a while but that’s where we are. NICU doesn’t always magically disappear into the sea if forgetfulness at discharge. Most times it continues for years.

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Ana Temple Rodney is Aiden’s Mom. She is an author, doula, yoga instructor, Reiki master, and mom advocate based in Baltimore, Maryland. Ana is the Founder of The Rising Mama Brand and MOMCares initiative. The Rising Mama is a brand that serves mothers and families in the Baltimore area through Reiki energy healing services, body positive yoga instruction, and supportive doula services.
The MOM Cares initiative is a program that offers free postpartum doula services to mothers in the NICU that are under supported, facing financial stressors, and women of color. Services include transportation, meals, bedside advocacy, mindful wellness opportunities for mom, baby sitting for older siblings, and self care opportunities.
Find us on the web at
Facebook: https://www.facebook.com/therisingmama/
https://www.facebook.com/MOMCares-1824911787813252/
Instagram: @the_rising_mama
@MOMCares_baltimore

twitter @momcares_balt
Youtube: https://www.youtube.com/channel/UC4OMGwkXTqc-BgyH92Ql39A
Www.therisingmomcares.com

http://www.therisingmomcares.com

Note to Self: YOU are your child Mama

Dear Mama,

I just had an experience at Aiden’s school. One of the teachers approached me earlier in the week to offer clothes that might fit Aiden. I believe in the power of cooperative community and have taken part in a number of hand me down and hand me up exchanges among moms in the community. Thinking nothing of it and saying yes, it quickly spiraled into a number of people reaching out to offer various forms of charitable donations. This took me aback because in my mind the offers began to feel like an indictment of the tireless work and energy I express to keep Aiden’s needs met. From the beginning Aiden has been the number one priority. Sacrafices big and small have been made in the name of his safety and comfort. As I spiraled into “I must be a failure of a mother” land I had to stop and ask myself why I was so bothered. Well, 1. I felt like any assumption that I was not capable of meeting Aiden’s needs would be seen as grounds to take him from me…WAIT, where did that come from?

This fear that has always been there, this fear that someone could take Aiden from me was planted early in the NICU when I was seen as a secondary at best caregiver to Aiden. His doctors, nurses, and medical team took care of Aiden, I just sat there feeling powerless. I asked to HOLD my son, I asked to FEED and BATH my son, I was pressured and made to feel guilty about my decisions for his medical care. The root of this stupid misunderstanding of overzealous people had more to do with feeling like I wasn’t a good enough mother and provider for Aiden than feeling judged for being open to a charitable gesture. As I sat in the kitchen processing and reminding myself of all the sacrafices, all the battles, all the love I’ve given to Aiden, I thought of you. Sitting in the NICU sometimes only holding his finger for 8 hours at a time, singing and reading books, sleeping with one eye open and keys in hand in case you needed to run back to the hospital. I remember the songs you sang to Aiden and they way you fought to feed him breastmilk until you couldn’t do it anymore. I thought of the angel and superhero you were to him in the NICU, the advocate (crazy Ms. Abram). I remembered the people that attempted to get information about Aiden by offering ill-meaning offers of charity. I remembered the connotation charity began to have with you as people stopped by the hospital to take selfies with “poor Ana and Aiden”. I remembered the fight within yourself between seeming ungrateful, actually needing help, and creating boundaries from the rumor mill. I remembered you fighting through all of that to arrive here, upset because someone wanted to dump all their clothes on you and may have decided you were in more need than you actually are, I remembered when you were in need for things and recieved most everything you needed twice over. I remember you judging yourself and feeling judged, feeling like you weren’t safe asking for a need because it became a way to manipulate you. But most of all I remember you being Aiden’s first and most pure line of defense, his MAMA. I think it’s time to continue the work and work on trusting yourself and evaluating your actual needs before saying yes to an offer, it’s time to start trusting that those around you don’t mean you and Aiden harm and realize that even if they did, you both are divinely protected. I just wanted to remind you and myself that we are kicking ass and Aiden is happy and cared for because that’s always been our priority. So take a deep breath and know that you are doing the best you can do and that’s pretty damn Amazing. Aiden is clean, fed, and happy 98% of the time, most moms will tell you that in itself is a feat. You…I…we are doing fine. Love you forever Mama.

Blessings,

Ana

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Ana Temple Rodney is Aiden’s Mom. She is an author, doula, yoga instructor, Reiki master, and mom advocate based in Baltimore, Maryland. Ana is the Founder of The Rising Mama Brand and MOMCares initiative. The Rising Mama is a brand that serves mothers and families in the Baltimore area through Reiki energy healing services, body positive yoga instruction, and supportive doula services.
The MOM Cares initiative is a program that offers free postpartum doula services to mothers in the NICU that are under supported, facing financial stressors, and women of color. Services include transportation, meals, bedside advocacy, mindful wellness opportunities for mom, baby sitting for older siblings, and self care opportunities.
Find us on the web at
Facebook: https://www.facebook.com/therisingmama/
https://www.facebook.com/MOMCares-1824911787813252/
Instagram: @the_rising_mama
@MOMCares_baltimore

twitter @momcares_balt
Youtube: https://www.youtube.com/channel/UC4OMGwkXTqc-BgyH92Ql39A
Www.therisingmomcares.com

http://www.therisingmomcares.com

Prematurity Awareness Month Kieta and KJ’s story

We are so humbled that families have agreed to share their stories with us in observance of Prematurity Awareness month. There is a need to make sure we are telling our stories and sharing our triumphs and challenges with the community. We honor the families that have shared pictures and stories around their journey as it continues to unfold.

 

Below you will find the birth story of Kieta M Iriarte and her little person AJ. Kieta is a entreprenuer in the Baltimore area who is focused on providing technical services to non profits and gvenment organizations in Baltimore and beyond.

Kieta M Iriarte

Birth Story of Karim “KJ” Amin

February 27, 2018

 

September 2013 my husband and I had a horrible miscarriage. We had just told our 2 daughters and all our family because we were one week away for the second trimester.  The day after we went to the doctor and there wasn’t a heartbeat.

 

In September of 2014, we were thrilled to announce that we were pregnant again. Knowing that this could be a high-risk pregnancy we were monitored.  We were also in transition as Karim took a contractor position and we moved to Winston Salem, NC.  Partly for his work, and partly because I didn’t want to work and wanted to focus on being pregnant and a mom to the girls.

 

Our initial due date was April 1, 2015 but at the 5th month we were told that I had a condition called placenta accreta/previa.  With this condition, I was told that I had to deliver prematurely, go on bed and pelvic rest, and have a 90% chance of having a hysterectomy and/or bleeding to death during childbirth.

 

My due date was pushed to March 15, then March 5, then was told I had to deliver at 35 weeks on February 28. The C-section was moved again to February 27th. In Winston Salem there are 2 hospitals.  Wake Forest which is a teaching hospital and Forsyth Hospital which has an entire birthing ward with amazing resources.

 

Our doctors choose to have the c-section at the teaching hospital. Unfortunately, the teaching hospital had zero knowledge or know how to deal with the complications that arise with a NICU baby and mom whom could not care for a baby.

 

When we arrived at the hospital triage they told us “we do not deliver babies in the hospital”.  Once they found our doctor and learned the severity we were told to go behind a curtain and I changed into a robe. From there we went to the operating room. At this point, we were told over 40 times that I could hemorrhage during the procedure and that it was a 90% chance I will have to have hysterectomy.

 

There were about 25 people in the operating room.  There were surgeons for the baby, oncologist, ob/gyns and all of their students.   My husband was there but I did not wake up until recovery. Karim said when KJ was born he was small and could not breath immediately. What does he do, stay with me or go with the baby to NICU?  We were told my risks of having an early C-section but we were never told the repercussions of having baby in the NICU.

 

My mother in law was able to stay with the girls.  She traveled to NC from Baltimore for the birth. When I woke up there were a number nurses. My doctor was nowhere to be found. In the room, I could not speak for myself.  I did not have a printed birth plan. They would not have listened.

 

My room  after my surgery was on the 7th floor. KJ was on the 4th floor.  I did not have to have a hysterectomy but I did need 2 blood transfusions.  I could not walk for 2 days. There was no skin to skin for 4 days.  I could not pump because I could not move.   My husband was able to do skin to skin.  It was also flu season so the girls and my mother in law could not visit the baby.

 

Once I was able to move from the bed to the wheel chair we would ask for transport to the 4th floor.  Over and over we were ignored, told no and not given the importance priority and support  that a mommy and baby need.

 

We complained many times that our requests were not being met.  No one seemed to feel as though it was a priority.  I  was in the hospital for a week.  Leaving the hospital without KJ was unbelievably hard.  I was used to having a baby and taking the baby home.  KJ had to stay in the hospital NICU for 20 days.  They gave us a website  we could log in and see him.  We tried to breastfeed but he was given formula right after delivery.  Without my consent.

 

KJ is an awesome 3 year old. I did not need a hysterectomy and we are both here to tell the story

Prematurity Awareness month: Complications for Mom, Blood clots

If you have read the blog at all, you know that most of the work I do currently stems from the premature birth of my son. This month, November, is Prematurity Awareness Month. In 2003, March of Dimes has been acknowledging November as Prematurity Awareness month. Each November organizations that support Premature babies and their families, families, and supporters have used November as an opportunity to raise awareness. MOMCares and the Rising Mama are no different.

This month we hope to highlight some of the challenges and triumphs of premature birth and bring awareness to how one might support a family dealing with a premature baby.

Babies born prematurely can face a number of challenges as they embark on a journey and fight for their life. Premature babies are categorized as babies born before 37 weeks gestation. Medically, 38 weeks is considered full term and 40 weeks is the ideal gestation for babies according to most medical professionals.

Mothers can also face complications. Personally, I experienced an emergency c-section at 28 weeks and 6 days gestation with my son. According to the Mayo Clinic, c-sections come with a list of possible complications that include,

  • Infection.
  • Postpartum hemorrhage.
  • Reactions to anesthesia
  • Blood clots.
  • Wound infection.
  • Surgical injury.
  • Increased risks during future pregnancies.

The first complication I noticbly experienced was blood clots. Late in the evening during the second day of my hospital stay, I began feeling discomfort in my left calf. I complained to the nurse that my leg cuffs had not been working (leg cuffs are electronic cuffs that cover your legs and massage them to decrease instances of blood clots). My legs were now sore but the nurse didnt seem to be alarmed. I continued to complain into the night until a friend advocated for me and a nurse finally called someone to do an ultrasound on my legs. In the middle of the night in the basement of the hospital, the technician found TWO blood clots in my left leg. I was immediately prescribed an anticoagulant or blood thinner to resolve the clots. I had to take an injection twice a day for at least 6 weeks and I was informed that I would need to be on blood thinners for any subsequent pregnancies in the future. Having developed blood clots puts me at risk for future blood clots period. I immediately felt even more broken than I originally felt and feared for any pregnancies in the future.

*NOTE* I am not a doctor and I am offering no medical advice or diagnosis. I am simply sharing the diagnosis’ that my son had as a result of his premature birth. Others you know may have experience with this diagnosis as it affects premature babies. I am sharing this information to raise awareness, encourage dialogue.

**************************************
Ana Temple Rodney is Aiden’s Mom. She is an author, doula, yoga instructor, Reiki master, and mom advocate based in Baltimore, Maryland. Ana is the Founder of The Rising Mama Brand and MOMCares initiative. The Rising Mama is a brand that serves mothers and families in the Baltimore area through Reiki energy healing services, body positive yoga instruction, and supportive doula services.
The MOM Cares initiative is a program that offers free postpartum doula services to mothers in the NICU that are under supported, facing financial stressors, and women of color. Services include transportation, meals, bedside advocacy, mindful wellness opportunities for mom, baby sitting for older siblings, and self care opportunities.
Find us on the web at
Facebook: https://www.facebook.com/therisingmama/
https://www.facebook.com/MOMCares-1824911787813252/
Instagram: @the_rising_mama
@MOMCares_baltimore

twitter @momcares_balt
Youtube: https://www.youtube.com/channel/UC4OMGwkXTqc-BgyH92Ql39A
Www.therisingmomcares.com

http://www.therisingmomcares.com

Prematurity Awareness Month: Complications for Baby

If you have read the blog at all, you know that most of the work I do currently stems from the premature birth of my son. This month, November,  is Prematurity Awareness Month. In 2003, March of Dimes has been acknowledging November as Prematurity Awareness month. Each November organizations that support Premature babies and their families, families, and supporters have used November as an opportunity to raise awareness. MOMCares and the Rising Mama are no different.

This month we hope to highlight some of the challenges and triumphs of premature birth and bring awareness to how one might support a family dealing with a premature baby.

Babies born prematurely can face a number of challenges as they embark on a journey and fight for their life. Premature babies are categorized as babies born before 37 weeks gestation. Medically, 38 weeks is considered full term and 40 weeks is the ideal gestation for babies according to most medical professionals.

One of the complications of Aiden’s premature birth was reflux or GERD (gastroesophageal disease) . Aiden was so small that his lungs were underdeveloped which caused him to breath rapidly and deeply. This breathing pattern created an environment when acid or bile from his stomach would come up into his esophagus. This would cause him to asperate or get liquid in his lungs which could have lead to pneumonia. We fought this issue throughout his entire 6 month NICU stay. Thankfully we were able to deal with his diagnosis through surgery and medication and as his lung disease began to resolve, so did his issues with reflux.

Below I have included some links to more reading about the specific implications of acid reflux and GERD on preemies.

 

*NOTE* I am not a doctor and I am offering no medical advice or diagnosis. I am simply sharing the diagnosis’ that my son had as a result of his premature birth. Others you know may have experience with this diagnosis as it affects premature babies. I am sharing this information to raise awareness, encourage dialogue and empathy.

 

https://www.verywellfamily.com/faqs-about-reflux-in-premature-babies-2748406

http://www.prematurity.org/baby/reflux-maroney.html

http://www.aappublications.org/news/2018/06/18/reflux061818

**************************************
Ana Temple Rodney is Aiden’s Mom. She is an author, doula, yoga instructor, Reiki master, and mom advocate based in Baltimore, Maryland. Ana is the Founder of The Rising Mama Brand and MOMCares initiative. The Rising Mama is a brand that serves mothers and families in the Baltimore area through Reiki energy healing services, body positive yoga instruction, and supportive doula services.
The MOM Cares initiative is a program that offers free postpartum doula services to mothers in the NICU that are under supported, facing financial stressors, and women of color. Services include transportation, meals, bedside advocacy, mindful wellness opportunities for mom, baby sitting for older siblings, and self care opportunities.
Find us on the web at
Facebook: https://www.facebook.com/therisingmama/
https://www.facebook.com/MOMCares-1824911787813252/
Instagram: @the_rising_mama
@MOMCares_baltimore

twitter @momcares_balt
Youtube: https://www.youtube.com/channel/UC4OMGwkXTqc-BgyH92Ql39A
Www.therisingmomcares.com

http://www.therisingmomcares.com

 

 

 

NICU Awareness Month Interview with Tiffany

To observe NICU Awareness Month, Ana had the opportunity to ask a few mothers to share their NICU experience.

Nationally, black babies represent the highest rate of premature birth, low birth weight, and fetal death while black women are 3 times more likely to die during or after birth than white women. This month and every month, the Rising Mama and MomCares stands with Black women and families facing this crisis.

We give thanks to Tiffany for her openness and candor in participating in this interview.

1. The first question will be asking you to share as much as you feel comfortable about your NICU birth story.

My name is Tiffany proud mother of 3, 2 of which were NICU miracles Ryian Christina my 35 weaker now 1 yr old also diagnosed with multicystic displastic kidney and Zen my 31 weaker now 5 months both delivered by emergency c section due to Hypertension/Preclampsia and other complications.

2. What were some of the unexpected challenges of your NICU experience?

Some of the unexpected challenges of my NICU experience were homelessness,cps,lack of family support,milk production, and connectedness.

3. Who was your support system during your NICU stay?

My support system during my NICU stay were my spouse and NICU staff

4. What advice would you share with a mother in the NICU today?

My advice for a NICU mama today is First, Breathe, have great faith & trust in your higher power, journal, self care, have patience with yourself and the process, and to surrender.

5. What was the greatest lesson you learned in the NICU?

My greatest lesson learned in the NICU was to have faith and surrender.

6. What did your experience look like after discharge from the NICU?

My experience after discharge looked like fear,uncertainty, chaos, and yet still joy that we “made it!” and reassurance.

7. Did you have a favorite nurse or medical staff during your NICU stay?

I most definitely had a few favorite NICU nurses during my stay. Mercy Medical Center has an amazing NICU staff.

8. How did your personal relationships change or evolve during your NICU stay?

My personal relationships during my NICU stay both changed and evolved specifically with my spouse the stress, exhaustion, uncertainty,and frustration challenged us yet made us stronger as a unit.However, as a woman/lifegiver there are things only that only we can understand physically and psychologically when it comes to emotions and connectedness.This is where we struggled the most. With ” family” and “friends ” my relationships changed drastically due to lack of support, mindfulness,and understanding.

9. What were some themes and lessons that came out of the NICU for you?

Lessons/ Themes that came from my NICU stay were 1) I am NOT in control
2) Spirituality and Mentality are EVERYTHING.

10. What was your most peaceful moment during your NICU stay?

My most peaceful moment during my NICU stay were the moments after a nurse intervened in the midst of a breakdown. She listened and held me
We prayed and she then spoke Blessings and positivity over my life. A strangers compassion and faith in me gave me both strength and peace.

11. Is there anything else you’d like to share?

On my last NICU stay the most challenging of the two. I was blessed with the presence of an amazing spirit Ms. Ana Rodney doula and creator of Momcares. Through her and her nonprofit I have recieved the highest level and most needed support both following discharge and postpartum. Financially, mentally,physically, and spiritually. From diapers, transportation to medical appts to distance Reiki.Momcares has been there for me in every step of my journey and gave me the reassurance after discharge that I am not alone and there are people who understand and genuinely care.

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Ana Temple Rodney is Aiden’s Mom. She is an author, doula, yoga instructor, Reiki master, and mom advocate based in Baltimore, Maryland. Ana is the Founder of The Rising Mama Brand and MOMCares initiative. The Rising Mama is a brand that serves mothers and families in the Baltimore area through Reiki energy healing services, body positive yoga instruction, and supportive doula services.

The MOM Cares initiative is a program that offers free postpartum doula services to mothers in the NICU that are under supported, facing financial stressors, and women of color. Services include transportation, meals, bedside advocacy, mindful wellness opportunities for mom, baby sitting for older siblings, and self care opportunities.

Find us on the web at

Facebook: https://www.facebook.com/therisingmama/

https://www.facebook.com/MOMCares-1824911787813252/

Instagram: @the_rising_mama

@MOMCares_baltimore

Youtube: https://www.youtube.com/channel/UC4OMGwkXTqc-BgyH92Ql39A

Www.therisingmomcares.com

http://www.therisingmomcares.com

Note to Self: What’s the Lesson? Patience.

Dear Mama,

They say Patience is a virtue. When waiting to be able to hold your little one or waiting to take your miracle home, or even waiting for your little one to come out of surgery or an intervention, you just want to hurry up and get to it. You don’t care about virtues, you want your baby. You want your baby to hit the milestones as soon as possible. You want your baby to sit up on their own, eat food without a feeding tube, (for God’s sake) come home already!

But what of patience is what you should be practicing? What if before you got to this earthly plane, you and your little one decided to spend significant time building your patience? I know that sounds crazy from where your standing but go with me for a second. We all have lessons or themes we find ourselves working on repeatedly throughout life. I know for sure patience has been on of my “areas of development ” . When it was time for Aiden to be discharged I was convinced that his discharge was all I needed in order to feel at ease and on control, in other words, I wouldn’t need my patience anymore. I wouldn’t need my patience anymore because I would be in control once again. But unfortunately, Aiden is 3 going on 4 and I still need to dig deep into my patience to make it through the day. I found that each day created an opportunity to be patient. The idea that everything would be “normal ” and thus under my control is just recently beginning to dissipate.

After the NICU it was medications, and doctors visits,and home therapies. As I crossed each thing off my list, something else seemed to populate onto the end of my list. I was rushing to get back into control but the thing is this might just be the lesson I signed up for. Patience. How comical! I may be missing something and from where you are sitting, your lesson might be something else but I ask you to slow down a bit, let some of the pressure ease and look for the lesson that is waiting for you in this trial? What can you get out of this? The heartache, the hurt, the loss of control, on a higher level, what is all of this cultivating in you?

As usual you are my hero and kicking ass navigating this process. I love you and keep swinging.

-Ana

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Ana Temple Rodney is Aiden’s Mom. She is an author, doula, yoga instructor, Reiki master, and mom advocate based in Baltimore, Maryland. Ana is the Founder of The Rising Mama Brand and MOMCares initiative. The Rising Mama is a brand that serves mothers and families in the Baltimore area through Reiki energy healing services, body positive yoga instruction, and supportive doula services.

The MOM Cares initiative is a program that offers free postpartum doula services to mothers in the NICU that are under supported, facing financial stressors, and women of color. Services include transportation, meals, bedside advocacy, mindful wellness opportunities for mom, baby sitting for older siblings, and self care opportunities.

Find us on the web at

Facebook: https://www.facebook.com/therisingmama/

https://www.facebook.com/MOMCares-1824911787813252/

Instagram: @the_rising_mama

@MOMCares_baltimore

Youtube: https://www.youtube.com/channel/UC4OMGwkXTqc-BgyH92Ql39A

Www.therisingmomcares.com

http://www.therisingmomcares.com

5 Things NOT to Say to a NICU Mom

To commemorate NICU Awareness month, I’ve decided to compile a list of helpful phrases to leave out of your mouth when speaking to a parent of a child in the NICU. Of course this list is based solely off of my experience and may differ from person to person based on their temperament. At anyrate, I believe this list covers a few commonly used phrases by people who don’t know what else to say

Of course if you know someone who has a child in the NICU, things are likely to be a bit precarious for a while and we all have been at a loss for words when attempting to console or check in. While there is never any way to know what a parent may need to hear, what I do know is there are a few things that a NICU parent NEVER wants to hear so here they are in no particular order.

5. “You’re GOING to be a great parent”. While this statement seems super supportive and positive it is deceiving. The use of the word “going” highlights the misconception that this mother is not yet a parent. A parent…a mother in particular, becomes a parent at the point of conception. It may be argued that it isn’t “real” until the child has been birthed, even with that thought, a NICU parent HAS birthed their child. They make life and death decisions daily, they worry and obsess about every decision, they are devoted to their child and their child’s survival, this means they ARE good parents. They are not waiting to go home in order to start parenting, like every other parent, their job starts promptly after delivery at the latest. Don’t negate their devotion to their child simply because they are not able to care independently for their child 24/7. If you want to uplift a NICU parent, tell them they are doing a great job and that the ARE good parents and their child’s best advocate. This is sometimes just enough to keep a weary parent from pulling their hair out.

4. “Take that baby home” this may communicate your desire for the baby to meet a healthy transition into the arms of the parent but what the parent hears is a reminder of how long it’s been and a slight judgement on the part of whomever is speaking. We all want baby home, yes but we want baby home safe and healing to a point that is manageable for the parent to be able to deal without the constant help and supervision of a medical team. Hospitals are businesses nowadays so trust me when I say, as soon as the child is ready, they will send them home. There are no doctors asking parents, “do you feel like taking your child home today?” And what’s more, there are no parents that would respond “eh naw not today, ask me about it tomorrow”. Demanding that a parent do something that they can’t control or stipulates is just a reminder of how out of control they are. If you must ask, ask if they know when the child is coming home which isn’t always a welcome question either as its hard to know these type of things far in advance due to the roller coaster nature of the NICU.

3. “When they do come home, you will never sleep again”
While this may in fact be true, the chances that a NICU parent doesn’t already know this are slim to none. I would almost go as far as to say a NICU parent craves the sleepless nights due to feedings and diaper changes and general crankiness as opposed to never getting a good night’s rest due to their child being across town instead of down the hall. In a situation that is already taxing, a NICU parent doesn’t need a reminder of the negative. Supportive and affirming visions about what home life will be like are what’s needed, not ominous predictions about how they will be uncomfortable. Parents don’t sleep, period. We all know that babies change our sleep patterns. NICU parents have enough dread and worry, try to relieve that with support and excitement.

2. “You aren’t the only one to go through this”

That of course is an unfortunate truth. As of 2012, 1 out of 9 births in the US was a premature birth according to the CDC. But the problem is that more than likely, YOU have not gone through this. Just like every pregnancy is different and every birth is different, every NICU scenario is different and all of them are challenging. To minimize an experience that you have no idea about, to downplay a situation you have never come close to, is insensitive and unfair. Depending on how the NICU Mom is handling things, you may not be aware of the severity. Things may look fine but could be crumbling. Things change very quickly in the NICU, what is promising one minute may very well deteriorate the next. It takes an especially strong (or sedated) person to handle all of this. Give them respect If you can’t support. “Good job”, “I’m proud of you”, these are things you can say in replacement for a comment that degrades all the work a NICU mom is doing to stay above water and to keep her family above water.

1. “Die” “death” “dying” “tie dye”. Pretty much any word that is associated with or sounds like the “D” word.

The one harsh and unrelenting reality that takes hold of even the most optimistic of NICU mom’s is the thought of death. There is no secret that children born premature are at high risk for death given their individual challenges, there is no reason to discuss it unless the NICU mom wants to. It’s there, they are thinking about it, it’s sitting in the back of their mind. Just steer clear. While my son was in the NICU I avoided movies, books, television shows and all types of media that dealt with death. It’s amazing how saturated our media is with death when you pay attention. Needless to say, I stayed away from the T.V. and was very picky about my books. The thought was too much to handle. Even family discussing religious death set me off. I didn’t want to talk or think about it. It was all I could do to stay focused on my son’s improvement. Long story short, watch your words. If the NICU mom wants to talk about it, then have at it. Everyone processes differently. My advice, mums the word until given notice it’s ok.

Words have power and sometimes in our attempt to relate or console in a hard situation, we say the wrong thing. Coming from a NICU mom, sometimes presence is enough. Take the lead from the mom or the dad, if they are smiling then smile, if they are crying let them cry, this is NOT about you. Support, encouragement, and affirmation are what’s needed most. We appreciate you, we love you, we are cranky and emotional, we just ask that you watch your words. Like the old adage says, if you don’t have anything nice to say, don’t say anything at all. Supporting someone through probably the roughest time of their life is difficult, the easiest thing to do is let them lead and stay positive. Hold space for them, you don’t have to “fix it”, you can’t. Being there is paramount, whether it’s being there in the hospital or being there over the phone to remind them to take care of themselves.

I am glad we are out of the hospital, the battle for my son’s continued growth and health still rages, the ones who made the difference were the ones who were just THERE. Support people are underrated and often not recognized but I am here to say thank you and offer a gift to be referenced when you just don’t know what to say.

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Ana Temple Rodney is Aiden’s Mom. She is an author, doula, yoga instructor, Reiki master, and mom advocate based in Baltimore, Maryland. Ana is the Founder of The Rising Mama Brand and MOMCares initiative. The Rising Mama is a brand that serves mothers and families in the Baltimore area through Reiki energy healing services, body positive yoga instruction, and supportive doula services.

The MOM Cares initiative is a program that offers free postpartum doula services to mothers in the NICU that are under supported, facing financial stressors, and women of color. Services include transportation, meals, bedside advocacy, mindful wellness opportunities for mom, baby sitting for older siblings, and self care opportunities.

Find us on the web at

Facebook: https://www.facebook.com/therisingmama/

https://www.facebook.com/MOMCares-1824911787813252/

Instagram: @the_rising_mama

@MOMCares_baltimore

Youtube: https://www.youtube.com/channel/UC4OMGwkXTqc-BgyH92Ql39A

http://www.therisingmomcares.com