Tag Archives: skin-to-skin holding

What NIDCAP meant to my NICU experience…

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Latoshia Rouse

Just 7 days earlier, I had an OBGYN visit. After a great visit, I asked other moms of multiples if they thought I would make it to 36 weeks. My doc seemed very confident that I would, but I wanted to talk to moms who had accomplished it. We laughed and giggled at the possibility of me breaking the record for triplet birth weights. Everything was going great! This day I was super tired. I was beginning to struggle with standing for short periods of time. I was seeing the toll this pregnancy was having on my body. I decided to lay down and rest, but I needed to go to the bathroom first. Once I got in there, I realized my water had broken. Within an hour I was in the emergency room. I still was not sure what all this meant, but I knew I was not going back home until I had them. I had a 3 year old at home and I was not able to be with him. I was so torn. Everything was messed up. My body was failing the babies I was carrying and I was not able to parent the baby that was here. This was a Tuesday and after the steroids/ magnesium, I delivered my babies on Friday morning. They were 26 weeks 6 days. 2lbs 10oz, 2lbs 8oz, and 2lbs 3oz of perfection. It was a whirlwind. I had 4 kids. From 1 kid to 4 kids in about 29 mins.

Latoshia, first time holding all three babies

After they were born, my kiddos went to the NICU. I didn’t get to see them at all. I was so anxious to see their faces. I felt like them being with me was a way I could help keep them calm. It was just a feeling. Later I would find out that my hunch was right. Meanwhile, my husband brought me pictures. We named them for the NICU staff and I was able to touch them gently. I was so proud of them. They were handling it. All the world was crashing down on them and they were still here. After some struggles in the beginning, I was starting to settle into the NICU life. I was taught about liquid gold and how breast milk was life saving. I was taught about how my touch would stabilize their breathing and heartrate. I was taught about brain development and how being there as much as possible to kangaroo would help develop their brains. All of a sudden, I was back. I was important in the life of my children. I could make a difference and I could parent them in the NICU. They were mine again.

Mommy Latoshia holds Ava and Layla

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Dad, William, holds Landon

I started to pay attention and learn each one to become the best expert I could be on them. What else do you do when the kid doesn’t talk back? You study them. You want to make sure your baby has the best premature experience they can have and you want to make it easy for them. After a few weeks of studying them, I showed up and there was a report taped on their isolette. It had NIDCAP and a rainbow line under it. I knew my hospital was a level IV, but I didn’t understand NIDCAP at the time. I started reading the report and it was spot on. The person who wrote this knew my babies. The report talked about what the baby liked and disliked. It made my babies individuals. It made the nurses aware that this child was different. This child has needs and was talking to them the best way he or she knew how.

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Ava, Landon and Layla, 5 years old

Layla, Latoshia, Brandon, Ava, William, and Landon

I later met with a soft-spoken gentle-natured doctor, actually the Infant & Family Specialist, and he was not like others I’d met. He was the person who wrote the report and he handled me with kid gloves. He spent time with me and explained the report. He answered my questions and gave me reassurance that what I was doing was great. It was the things that made me feel like my kids were getting the best possible care. They were there to care for my babies emotionally and not just physically. They were there to mitigate and that is exactly what I wanted. We could not turn back the hands of time, but we could mitigate the effects of prematurity for my kids. And that is the very best next thing. I’m forever grateful that my babies were born in a NIDCAP hospital. I credit that good fortune with the fact that all of my children are happy, healthy, and completely normal 5 years later.

-Latoshia Rouse
NICU Family Advisor and Coach

 

 

 

 

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NIDCAP – Mi experiencia personal con trillizos

Mónica Virchez

Tuve la oportunidad de tener a mis trillizos en el año 1999 en Londres, Inglaterra. Nacieron de 29 semanas de gestación en el Hospital Hammersmith y posteriormente los trasladaron al Hospital Saint Mary’s. Los bebés, dos niñas y un niño  pasaron dos meses en la UCI de neonatos de la Winnicott baby Unit. Durante la estancia en UCI recibimos información para poderlos apoyar en su desarrollo en general, sobre todo a nivel físico, psicológico y emocional. Trasladaron a los 3 bebes en una ambulancia especial para prematuros de un hospital a otro junto con una enfermera especializada con la que más tarde tuvimos mucho contacto. Cuando llegamos al segundo hospital encontramos un corcho colgado en la pared en donde venía escrito el nombre del personal sanitario para identificarlo más fácilmente a tanto a los médicos como a las enfermeras.

Instalaron a los bebes en una sala común pues había varios bebes ingresados y la unidad de cuidados intensivos se veía muy activa en ese momento.

Nos dio la bienvenida Inga Warren especialista en el desarrollo del bebe y después supimos que entrenadora del método NIDCAP en Inglaterra. Ella nos enseñó la unidad de cuidados intensivos, explicando cada diferente sala y lo que necesitamos saber sobre la Uci.

TRILLIZOS EN UCI. 1999 smPercibimos desde el inicio que era un lugar acogedor, silencioso y con la luz tenue. Vimos que colocaban mantas tipo cobertores protectores de luz en cada incubadora. Intentaban que hubiera poco ruido de los aparatos eléctricos que estaban cerca de los bebes. Al principio colocaron a las niñas en una sola incubadora para que estuvieran cercanas y guardaran calor, posteriormente me entere que a esto se le llamaba colecho y al niño en otra y compartían sala con otras incubadoras. Las primeras semanas los tres bebes tenían sonda endosogástrica y oxígeno.

El personal sanitario nos invitaba a ponerlos en una posición contenida de su cuerpo, tipo fetal para que así se sintieran más protegidos dentro de la incubadora.FotoCheryMasaje

Desde que pisamos la Unidad, las enfermeras nos motivaban e insistían mucho para poner en práctica el contacto piel con piel y el método canguro con nuestros trillizos aunque fuera un poco complicado por los tubos que llevaban consigo. Y también nos invitaban a estar  junto a la incubadora. Tanto su padre como yo nos lo poníamos en el pecho para sentirnos cerca de ellos. Luego nos explicaron que este método ayuda a que el bebe se sienta más seguro, calientito, su ritmo respiratorio y de corazón se estabilicen. Es un momento muy especial de comunión entre padres e hijos. Y fue una profunda experiencia para nosotros como padres con ellos.  Aprendimos el valorar que el contacto piel con piel es básico pues es  el alimento emocional del bebé. Lo practicábamos varias horas al día y posteriormente en casa cuando tuvieron el alta hospitalaria. Nos dimos cuenta que el método canguro está altamente relacionado con el vínculo padres-hijos, lactancia materna y el contacto con los hijos. Ponerlos en nuestro regazo funciono como una verdadera incubadora. Es un método que permite la atención más humanizada de la madre y niño prematuro. Brinda seguridad, favorece la sobrevivencia, es un método efectivo en el crecimiento y desarrollo del trillizos.metodo.cangur smniño prematuro. En la madre y la familia las ventajas son: favorece la relación madre- hijo. Fortalece el núcleo familiar y la confianza de los padres. Mejora la adaptación e integración al grupo familiar.

SWScan0000100011 smLa Uci neonatal se convirtió en nuestro segundo hogar y siempre nos sentimos muy cómodos en ella. Podíamos visitar a nuestros hijos las 24 horas a la hora que quisiéramos. Cuando teníamos dudas, preguntábamos a las enfermeras quienes nos daban indicaciones necesarias y nos animábamos para sobrellevar la difícil situación.

Acerca de mis trillizos, ellos nacieron en un hogar bilíngue donde se habla catalán y español. Nosotros vivimos en Madrid y ellos han asistido a una escuela bilingue, han aprendido 3 idiomas durante su estancia escolar: inglés, alemán y francés. La primera fué difícil y estresante para ellos. Fiona y Didac tuvieron que repetir curso en secundaria y fue algo que les ayudo mucho y fue muy relajante para nosotros. Durante el seguimiento del prematuro, ellos tuvieron revisión pediátrica y psicológica a los 4 y 8 años de edad y finalmente a los 16 años para una orientación vocacional con resultados óptimos.

_83A3015 as Smart Object-1 nuevaActualmente ellos tienen 19 años de edad y cursan la Universidad. Tania esta estudiando Administración de Empresas, Fiona estudia Psicología y Didac Relaciones Internacionales.

Siempre tratamos de que tuvieran las revisiones medicas y psicológicas necesarias durante su infancia y adolescencia. Creo que la dedicación y guía de los padres es muy importante. He dedicado 100% de mi tiempo en ellos y estamos muy orgullosos ellos y de los resultados académicos.

 

 

-Mónica Virchez
President
PREMATURA Association
Spain

 

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When Life Gives you Lemons: A Personal Story from Bulgaria about Pregnancy, Birth, Loss & Family, Part 2

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Nina Nikolova

In 2008, following the deaths of my children, I went home from the hospital feeling empty and broken-hearted. I simply wanted to close my eyes and die. I physically appeared to look pregnant and friends continued to enquire after the well being of my babies. I did not have the mental strength to deal with the reality of the situation and my husband was left to field the well-meant enquiries.

A number of months later we decided that we were strong enough to try for another pregnancy. The desire to have a family was so strong yet despite not being emotionally ready, we found the strength to embark on another pregnancy journey. Unfortunately the ICSI attempt failed and we had to face the stark reality of waiting for 12 months before we could try again (in Bulgaria families must wait 12 months between fertilization attempts).

Returning to work proved more difficult than I anticipated. While my friends and colleagues so dearly wanted to support and help me, they didn’t know how to speak with me, what questions to ask, or what I needed to help me in my grief.

It took the best part of a year to return to my former self, but I yearned to have children and life was incomplete without a family. I longed to feel happiness again and I longed to have children in my life… and so we embarked on our 4th ICSI fertilization attempt.

On one of our national Christian holidays, Blagoveshtenie, when we deliver good news to people, we discovered that our ICSI attempt had been successful. We were overcome with joy to discover that we had four fertilized eggs. Given the difficulties that we encountered with our first pregnancy, where we first implanted three embryos but took the decision to remove one to provide the remaining two a better chance of surviving, we decided to proceed with a twin pregnancy on this occasion.

I was confined to home during the pregnancy and was closely monitored by my medical team. I was required to take medication and inject daily in order to keep the pregnancy healthy. Instead of feeling the joy of carrying my babies in my womb, my days were spent crossing off days on a calendar, counting days, and praying so hard that my babies would stay safe.

During the third month I began to bleed very heavily and was hospitalized for one month, but no underlying cause was found for the bleeding. I opted to obtain the opinion of another doctor where it was discovered that I was carrying a third embryo that had died inside of my womb. The existence of this embryo was placing the well-being of my babies at risk, and the threat of infection that may lead to preterm labor was becoming a greater threat.

At six months my blood pressure began to become a concern to my medical team and I was referred to a cardiologist for treatment.

On a beautiful sunny September 9th, I visited my gynecologist for a routine checkup and was assured that the pregnancy was healthy. However less than 24 hours later at week 29 of my pregnancy, my waters broke and I knew that I would soon meet my babies. Strangely, I didn’t have any fear on this occasion; something I cannot explain. Perhaps given the pain that we had suffered in the past, I felt that my angel babies would keep us all safe.

Given the high risk nature of the pregnancy and ever rising blood pressure, the decision to deliver my babies by Caesarean Section was made by my medical team.  A little part of me still felt this overwhelming fear at what could happen and tears flowed inside for the babies I had lost. We had been on this road before and I wasn’t sure if I had the strength to come home childless again.

Baby Martin was born at 11 a.m. on September 11th weighing 1170 grams followed two minutes later by his sister Joana who weighed 930 grams. After a quick introduction to my babies they were taken away from me to be cared for by medical professionals. However in comparison to our previous experience, I felt different on this occasion; somehow I knew that the outcome would be favorable and sure enough, the experience couldn’t have been more different. I was encouraged to express milk (but there wasn’t a specific room for me to do so), I was permitted to remain in the hospital for a longer period of time in order to be with my babies, and when they were strong enough I was actively encouraged to breastfeed.

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Joana soothes herself on brother Martin’s hand

Typically in Bulgaria, families are allowed to visit the babies in the NICU only few times a week, depends on the hospital. Since the hospital was a private hospital, I was allowed daily access for one hour. Martin made good progress during his three month period in the NICU, but Joana struggled.  Four weeks after the birth, Joana’s doctor summoned us to a private meeting. With my only experience of such meetings ending in catastrophic news, I was understandably terrified. As Joana continued to struggle to progress from requiring CPAP and Oxygen support to breathe, I had convinced myself that the news about Joana would replicate that of our poor Alexandra. When the doctor disclosed that Joana had a fracture of her femur, I broke into laughter to a somewhat bemused physician. He would never understand the absolute relief that I felt that the news was not pertaining to Joana’s lung health. It was also discovered that Joana had only one kidney (not related to her prematurity). Shortly afterwards the doctors diagnosed Joana with rickets and she required Vitamin D injections intra-muscularly. As Vitamin D was not available in Bulgaria we had to order the medication from France and have it shipped to Bulgaria.

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Joana and Martin enjoy their grandfather’s Birthday celebration

It would be two months before I could hold Martin and 72 days before I could hold Joana. My babies were cared for in a very bright environment devoid of any signs of developmental care, a topic that I would only learn about many years after their birth. Kangaroo Mother Care wasn’t allowed in our unit because the doctors don’t want to accept it yet.

On the 30th of November Martin was discharged from the NICU, and Joana followed four days later. After the initial euphoria of both babies surviving their premature birth, the shock of having them home, without the support of the medical team overwhelmed us. There is no long-term follow up support in Bulgaria following discharge and after one home visit from our general practitioner, we were left to our own devices to care for our infants alone. We also were financially burdened after discharge and required to pay €4000 to the hospital to cover some of the cost of their care in the NICU.

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Nina with Joana and Martin at 6 years old

Struggling to come to terms with the way our health system cares for premature babies and their families, I, along with two parents whom I met while in the NICU, Nadya and Violeta, decided to create a foundation that would advocate for improved care and outcomes in our country. Our Premature Babies was founded in March 2012 and we are now the largest organization in Bulgaria to represent the needs of families of preterm infants. Through our international networks we have identified the short comings in our health systems, the greatest one is the lack of family centered care. We work closely with international organizations, such as the NIDCAP Federation International, in our efforts to introduce scientifically proven methods of care to the Bulgarian neonatal care system and we continue to be the voice of the newborns.

- Nina Nikolova
Chairwoman and Co-Founder of Our Premature Children Foundation, Bulgaria
Member, Parent Advisory Council, NIDCAP Federation International, Inc.
Sales Manager, Bulgarian Land Development

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An Irish Mother’s Journey: Preterm Birth and Beyond, Part 3

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Mandy Daly, Dip. H Diet & Nutrition, Dip. Ki Massage, ACII, DLDU

Leaving the secure if somewhat claustrophobic bubble of the NICU after three months was tinged with many conflicting emotions. We so desperately wanted to be a “normal” family, yet in our hearts we dreaded the day that the enormous responsibility of caring for our daughter would be placed on our shoulders alone. Our parenting journey to date had been filled with medical emergencies, medical interventions, enough medical personal to fill a football team and very little family time to enable us get to know Amelia.

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Warming It Up in the NICU

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Jeffrey R. Alberts, PhD, Professor of Psychological and Brain Sciences, Indiana University

This is my first blog ever, so I chose a big topic that can be discussed generally and then followed-up with additional, interesting information that I’d love to share.  Although the initial topic is big, it is just one word – warm.

The meaning of words has always fascinated me. Warm has two different kinds of meaning and both are important in the NICU environment. One meaning of warm is thermal, referring to moderate heat. The second meaning of warm is emotional, implying a positive attitude or support. These dual meanings – thermal and emotional – are not just an oddity of English. The same duality appears in every language that has been analyzed for this: Arabic, Bambara (from Mali), French, German, Hungarian, Finnish, Wolof (from Senegal), and more. Continue reading

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