Tag Archives: social work

Why I Am A March Of Dimes Ambassador Mom

A doll that is the size Charlie was at birth. The doll is wearing the same hat and diaper Charlie wore.

The doll in my hand is the size Charlie was at birth. The doll is wearing the same hat and diaper Charlie wore.

Today, Charlie and I kicked off another March of Dimes fundraising event at a local store. It was the first time I lost my composure as I told our story.

Why do it? Why rehash a painful story over and over again? The answer is simple really.

These are the reasons why I speak about our story and raise money for the March of Dimes:

It’s for the moms of angels. Even though I can’t possibly imagine the feelings of a loss so great, I want them to know that their baby is not forgotten. I want them to realize that they are not alone as they figure out how to carry on and find peace.

It’s for the moms of preemies. There are very few who understand the heartbreak, sadness, loneliness, and fright that come with having a preemie. I want them to have comfort, support, and hope.

It’s for the moms of babies with birth defects. I want to raise awareness, understanding, and support for those families.

Charlie and I as we finish our story.

Charlie and I as we finish our story.

It’s for NICU babies. I want them to have bright futures.

It’s for every pregnant woman: present and future. I want them to have a healthy pregnancy.

It’s for every newborn. I hope for healthy futures.

It is for myself. I need something good to come from all this (other than Charlie) so I can one day move past it.

And finally, it is my way of saying thank you for saving my baby and many others.


Programs, Waivers, And Forms… Oh My!

Any parent of a special needs child knows that expenses add up quickly. In addition to the usual child rearing expenses, we encounter expenses from PT, OT, speech therapy, doctor appointment co pays, dieticians, special formula, orthotics, home health nursing, and therapeutic equipment. Over the past few months, I sought information on programs for which we may qualify. Today, everything was in place to apply.

If you live in Virginia, I recommend Moms In Motion  for help with the Medicaid Waiver process. The organization does a great job providing explanations of the different types of Medicaid Waivers, who qualifies, and how to apply. In addition, they offer assistance with applying for two other programs that may be helpful for children with special needs.

For those who do not live in Virginia, ask your Early Intervention services coordinator for suggestions of where to start. Charlie’s services coordinator was extremely helpful with sending us literature and directed us to Moms in Motion. Another useful place to begin is the local department of social services.

Filling out the forms was time consuming and a little confusing. Honestly, some of the questions sounded like riddles. That is why it is helpful to have an agency like Moms in Motion available to answer questions. By the end of the process, I was more than a little frustrated and could only hope that I answered everything correctly. However, it was doable.

Thankfully, the forms are finally complete and ready to be submitted. My fingers are crossed that Charlie qualifies for one or more of the programs.

1896789_10101570854357149_1447267072_n

 

 


Happy National Social Work Month

I mentioned yesterday that March is a busy month. In addition to Child Life Month, it is also National Social Work Month.

One of the many learning experiences that came with Charlie’s birth was when I found myself in the role of the client. Here is my account taken from an earlier post:

I was well aware of the role of a social worker before I had my micro-preemie. A few years prior to Charlie’s birth, I had earned my BSW. The graduate program decision was in process when my husband proposed the idea of having a baby.

premie under the bili lightsCharlie’s early birth transposed things and placed me on the opposite side of the exchange from what I was accustomed. Therefore, it was peculiar for me to be visited by the NICU social worker a few hours after Charlie was born at twenty six weeks.

It was more than likely difficult for her to visit me during the midst of my nightmare. Anger was one of the many emotions I was experiencing at the time and I had no problem expressing it. But, social workers can be counted on to respond where they are needed no matter how unpleasant (or, in my case, angry) the situation may be.

The NICU social worker managed to introduce herself in between my magnesium sulfate fueled rants and my heartbroken sobs. She left a bag with booklets and literature about the NICU, preemies, and support organizations. I dismissed the encounter as something that was part of the administrative process and had no intention of ever speaking to her again. I mistakenly believed that I did not need a social worker. After all, I was one.

The day after I was discharged, she found me by my baby’s isolette. We retreated to a quiet room in the back of the NICU and talked. I profusely apologized for our first meeting. However, I was hardly more agreeable that day. Undeterred, she proceeded to address the concerns of a new long term NICU mom.

First, she helped me understand my baby’s insurance situation. That was followed by a crash course on our new NICU life which included information such as where to eat, where to pump, parking, visiting regulations, resources, and NICU procedures. Next, she explained that I needed to advocate for my baby.  Finally, we touched on the unthinkable as I asked about choices, decisions, and options in my baby’s care.

The first month or two that Charlie was in the NICU, I was consumed with grief. It was confusing for me to be lost in grief despite my baby’s survival. The NICU social worker directed me towards helpful resources and I attended NICU parent groups she provided. Eventually, the grief started to lift. Each time we passed in a hallway, she reminded me she was there if I needed anything.

2012-07-21 001 008After a little over two months, Charlie was considered a feeder-grower. At which point, we had opted to have her transferred to a different hospital. My husband and I looked forward to having a shorter drive, a private NICU room, and several other advantages the new hospital afforded. Despite our eager anticipation, the transfer stalled for unknown reasons.

No one could answer the questions I asked and appeared to be irked that I asked them. I was stuck, frustrated, and had no where else to turn. That night, I pounded out an angry email rant to the NICU social worker. I wanted her to sympathize. I needed to let off steam. I hoped she could explain what was happening and possibly offer ideas of what to do next.

Instead, her response exceeded anything I hoped for. She simply responded, “Do you want me to help you with this?” I was thrilled to have an ally and accepted her offer to help. She instructed me to meet with her the next day.

As I left for the hospital the following day, I muttered to my husband, “I’m not leaving the hospital today until I get my baby out.” Once at the hospital, I stomped through the parking garage with my teeth grit and fists clenched. I was ready for battle. I made my way up to the NICU with my head held high and chest thrust forward. If necessary, I was prepared to create a scene.

A fight wasn’t necessary that morning because the social worker had taken care of everything. She explained that Charlie had been, in essence, lost in the system. Due to the social worker’s intervention, Charlie would be transferred the following morning at 10 AM.

The social worker was there when I thought I was on my own and powerless. She was a compassionate voice of reason when I was overcome with emotion and overwhelmed by the situation. I can’t imagine how the three months in the NICU would have been without her.

Charlie resting peacefully after her transfer.

Charlie resting peacefully after her transfer.


The Cost Of It All

Financial cost is a topic that I frequently see discussed on medical ethics blogs and rarely discussed on the preemie parent blogs. Although, it is a regular topic of conversation on the closed preemie boards. An exception to this generalization is the Love That Max post titled How Much Do Therapies Cost For Your Child With Special Needs.

I can tell you from our experience it is expensive to have a preemie and/or a special needs child. Even though our household has a respectable income and we have “good” insurance coverage for Charlie, our budget is tight.

Where do these expenses come from? Therapist co pays (if covered at all), specialist co pays, re hospitalizations, diagnostic test co pays, lab co pays,  special formula (not covered by insurance), orthotic co pays, medicines with $50 co pays, dietitian (not covered by insurance), and other special equipment (such as therapeutic equipment). That is in addition to all regular expenses involved with raising a child.

Charlie is priceless to me and I would take on even more cost if I had to for her. So, like other preemie moms, I learned to fight automatic denials,  have become an expert in Charlie’s insurance coverage, and am sure to document everything. My husband and I make our clothes last longer, go without vacations or date nights (we haven’t been out on our own together since Charlie has been home from the NICU), and shop at outlet stores. Also, I am learning about health programs that are available as she grows older.

As lousy as it is to be forced to fight for the coverage we pay for or have to pay completely out of pocket for things, I consider us lucky. I have met many preemie moms that have lost their homes or been forced to declare bankruptcy. I have even met a parent that had to take their child overseas to receive affordable treatment.

I am not sure what the answer is but our health care system is broken. Even though we did everything we were “supposed” to do, I feel like the system failed us. We are not alone. The majority of people in this country are one medical catastrophe away from financial ruin. I want to know how this is a good thing for our country.

It is time there is pragmatic talk about agreeable solutions. Even with insurance, the American dream frequently dies with the birth of a micro preemie.

1525301_10101486309475769_1476275449_n


How March Of Dimes Helped When I Had A Preemie In The NICU

In honor of Prematurity Awareness Month, I am attempting to write a post a day (with the exception of power outages). With select posts, I hope to address a different aspect of our prematurity journey.

When I was a kid, a couple of the ladies in the neighborhood went door to door and collected for the March of Dimes. Other than having to do something with babies, I did not know what the March of Dimes did.

I had not thought about the March of Dimes again until after Charlie was born.

After meeting Charlie, I noticed there was a cart in the NICU hallway loaded with books. I looked over the cart and selected a thick book about preemies which became my new parenting guide. The book went everywhere with me during the following week as I made my way through its pages. I remember a label on the book because I picked nervously at the label while I sat in the NICU waiting room. The label read, “March of Dimes NICU Family Support Bedside Reading”.

About a week after Charlie was born, I wandered into my first NICU scrap booking class. I was a mess. I had cried until I no longer could, every breath felt like it took enormous effort, and I was functioning on autopilot in a haze. Scrap booking was the last thing I wanted to do. Despite everything, the NICU secretary insisted that I should go.

One of the pictures a NICU nurse had taken for my scrap book.

One of the pictures of Charlie a NICU nurse had taken for my scrapbook.

Once I arrived at the scrapbooking session, I was warmly greeted by the hospital’s March of Dimes NICU Family Support Specialist. She helped me choose a scrapbook and presented a few examples. There were several other parents who were already busy working on their scrapbooks. Although I could hardly speak, I went to work mindlessly pasting as I listened to the other parents talk.

It was the first of many sessions.

The weekly scrapbooking sessions made what was happening feel normal. It presented the opportunity to meet some of the other NICU parents. Additionally, the sessions not only made taking NICU pictures of our baby acceptable (something I wondered about) but encouraged it.  The scrapbooking class was how I learned about milestones that are unique to the NICU. It was a way for me to process what was happening at a time when words failed me.

There is a steep learning curve in the NICU. Medical terminology, equipment, and conditions are suddenly tossed at parents. To understand my baby’s needs and care, I attended classes offered to NICU parents by health professionals. The topics varied such as respiratory care, nutrition, and development. The classes were also part of the March of Dimes NICU Family Support program.

I wanted to expand on the information covered and found a neonatalogy text book in the hospital’s health sciences library. I had plenty of time to read and slowly worked my way through it. I read about the pulmonary surfactant my baby received. The book explained that the March of Dimes had played a role in its research and development.

One morning, around a month into Charlie’s NICU stay, I found it particularly difficult to drag myself into the hospital for yet another day. I couldn’t eat one more bite from the hospital cafeteria, spend one more minute in a very confined space, or withstand one more alarm in the clamor of the NICU. My morale was at a low point. When I finally trudged up to the NICU that morning, a basket with boxes of cookies (provided by the NICU Family Support Program) greeted me in the NICU waiting room. It sounds silly, but the small gesture rejuvenated me. I wolfed down a few cookies, scrubbed up, and resumed my daily bedside ritual.

Charlie came home after three very long months. But, contrary to popular belief, coming home doesn’t mean “it’s over”. It was merely the beginning of another chapter. Fortunately, I am able to connect with other NICU parents for support via the March of Dimes Share Your Story website. Recently, I was able to attend the annual gathering of the website’s users. It was wonderful to meet the other users face to face. I am in awe and inspired by the remarkable people I met.

The story does not end here. I continue to be in contact with the NICU Family Support Specialist (as well as one of the moms I befriended in class). The NICU support specialist was crucial during my NICU parenting journey. Among many things, she was a guide through my NICU experience, my first connection to the preemie community, and introduced me to preemie parenting life. Most importantly, she helped me rediscover my voice and empowered me during a time I felt I had been broken.

I am proud to say that we are a March of Dimes Ambassador Family. I want others to know what the March of Dimes does without having to experience the NICU. Being an ambassador is my way of saying thank you for what we have been given. If anything, I hope to make things better for the NICU families behind us by sharing our journey.

If you’d like to support our 2014 March For Babies team, you can do so at our team page located here.

Charlie at last year's March For Babies.

Charlie at last year’s March For Babies.


Social Workers: Overlooked Heroes In The World Of Premature Birth

In honor of Prematurity Awareness Month, I am attempting to write a post a day. With each post, I hope to address a different aspect of our prematurity journey. 

I have read many articles and posts about the wonderful medical professionals in the NICU and have written a few myself. However, there seems to be little written about social workers. There were two, in particular, who were heroes in the shadows of my NICU experience. I will not forget the support and comfort they provided.

I was well aware of the role of a social worker before I had my preemie. A few years prior to Charlie’s birth, I had earned my BSW. Charlie’s birth transposed things and placed me on the opposite side of the exchange from what I was accustomed. Therefore, it was peculiar for me to be visited by the NICU social worker a few hours after Charlie was born. I am sure that it was strange for her to visit me during the midst of my nightmare. Anger was one of the multitude of emotions I was experiencing at the time and I had no problem expressing it. But, social workers can be counted on to respond where they are needed no matter how unpleasant (or, in my case, angry) the situation may be. I didn’t know it at the time but I needed a social worker.

The NICU social worker managed to introduce herself in between my magnesium sulfate fueled rants and my heartbroken sobs. She left a bag with booklets and literature about the NICU, preemies, and support organizations. I dismissed the encounter as something that was part of the administrative process and had no intention of ever speaking to her again. I mistakenly believed that I did not need a social worker. She may have stopped by my room during the course of my stay but I had mastered the art of avoiding visitors by pretending I was asleep.

The day after I was discharged, she found me by my baby’s isolette. We retreated to a quiet room and talked. I profusely apologized for our first meeting. However, I was hardly more agreeable that day. Undeterred, she proceeded to address the concerns of a new long term NICU mom. First, she helped me to understand my baby’s insurance situation. That was followed by a crash course on our new NICU life which included information such as where to eat, where to pump, parking, visiting regulations, resources, and NICU procedures. Next, she explained that I needed to advocate for my baby.  Finally, we touched on the unthinkable as I asked about choices, decisions, and options in my baby’s care.

The first month or two that Charlie was in the NICU, I was consumed with grief. It was confusing for me to be lost in grief despite my baby’s survival. The NICU social worker directed me towards helpful resources and provided NICU parent groups. Eventually, the grief started to lift. Each time we passed in a hallway, she reminded me that she was there if I needed anything.

A little over two months into Charlie’s NICU stay, she was considered a feeder-grower. At which point, we had opted to have her transferred to a different hospital. My husband and I looked forward to having a shorter drive, a private NICU room, and several other advantages the new hospital afforded. Despite our eager anticipation, the transfer stalled.

We were told each day that our baby would probably transfer the next day. After a week of this, I had enough. It was one of those days in which my private kangaroo session had been peeped on by prying eyes, other babies’ visitors sniffled and coughed as they passed my baby’s isolette, and unattended kids screamed relentlessly all day in the NICU waiting room. I needed to get my baby out of there. No one could answer the questions I asked and appeared to be irked that I asked them. I was stuck and frustrated.

With no where else to turn, I wrote an angry email rant to the NICU social worker. I wanted her to sympathize. I needed to let off steam. I hoped she could explain what was happening and possibly have ideas of what to do next. Instead, her response exceeded anything I hoped for. She simply responded, “Do you want me to help you with this?” I realized that I had an ally and accepted her offer to help. She instructed me to meet with her the next day.

As I left for the hospital the following day, I muttered to my husband, “I’m not leaving the hospital today until I get my baby out.” Once at the hospital, I stomped through the parking garage with my teeth grit and fists clenched. I was ready for battle. I made my way up to the NICU with my head held high and chest thrust forward. If necessary, I was prepared to create a scene.

A battle wasn’t necessary that morning because the social worker had taken care of everything. She explained that Charlie had been, in essence, lost in the system. Due to her intervention, Charlie would be transferred the following morning at 10 AM.

My husband and I joke that Charlie would still reside in the first NICU if it weren’t for the NICU social worker. She was one of two social workers that were invaluable during our preemie journey. The second social worker was from the March of Dimes. That story is another post for later this month.


Meanwhile, On Capitol Hill…

It is easy for me to get wrapped up in the chaos of our daily lives. I am so busy trying to survive the ups and downs that I sometimes forget about happenings that occur outside of our bubble.

Thankfully, I was informed last week that there are two pieces of legislation currently in front of Congress that concern premature birth and newborns.

One piece is the PREEMIE Reauthorization Act (S. 252/H.R. 541). According to the March of Dimes website:

“If enacted, the bill will authorize enhanced research, education and intervention activities aimed at improving pregnancy outcomes.”

More can be found about the PREEMIE Reauthorization Act here.

The other piece is Newborn Screening Saves Lives Reauthorization Act (S.1417/H.1281). Once again, the March of Dimes Website provides a concise description of the bill:

“The Newborn Screening Saves Lives Reauthorization Act reauthorizes critical federal activities that assist states in improving and expanding their newborn screening programs, supporting parent and provider newborn screening education, and ensuring laboratory quality and surveillance.”

More about the Newborn Screening Save Lives Reauthorization Act is located here.

What can you do?

Advocating for these bills from the comfort of your home is simple. The March of Dimes Advocacy Action Center has made it easy to write your representative in support of this legislation.

Let’s get behind helping all babies.

Photo Credit: Monica DeMariano

Photo Credit: Monica DeMariano


Please Understand

Almost every preemie mom has a list of things they wish others knew. Here is mine:

  1.  Even though Charlie is no longer in isolation, I am still afraid of her getting unnecessarily sick (and having to return to the hospital). Please cover your mouth when you cough, do not touch her when we meet you in a doctor’s office waiting room, and refrain from asking to hold her immediately after graphically stating how sick you are. Please do not smoke around my baby (or any baby).
  2. I am exhausted. She is no longer in the hospital but it does not mean our ordeal is “over”. We are swamped with medical appointments, counting calories, managing medications, and various therapies. She needs to be fed often, sometimes she fights feeding, and struggles to keep down what she has eaten. There is very little that is “normal” about our lives yet. I still need your support and understanding.
  3. I do not know when or if she will reach her next developmental milestone and neither do her doctors. I can not answer questions such as “When will she be able to walk?” or “When will she be able to wean off of formula?” When people ask these questions, it reveals how disconnected they are from my world. It is similar to when we were constantly asked, “When is she coming home?” when she was in the NICU.
  4. I’m begging you. Please, no more anecdotes. Every baby (and preemie) is different. Charlie is doing things on her own time. I am okay with this. I do not want to hear a story about some other preemie that is “fine”.
  5. There are plenty of good sources to learn about preemies and the NICU. Please stop believing misinformation that is circulated like gossip.
  6. We live a very day to day existence. On tough days, it is one minute to the next.
  7. I miss many of my friends. We want to see you. Please invite us to visit or accept our invitation to visit.
  8. I had a plan of how I wanted to do things but it did not work out. I know breast is best, reusable diapers are better for the environment, and so forth. Many choices were made for me based on Charlie’s medical needs. I do not need to be “educated”.
  9. People who understand the least about what we have been through often feel they know the most about what is best. I am tired of being told “what I need to do”.
  10. I am really proud of my baby. We celebrate A LOT.

Other NICU moms, what do you think? Did I miss anything? What would you add?

blog


Learning To Advocate

I very clearly remember meeting the NICU social worker.  It was a week after Charlie’s birth. She was explaining NICU life, support systems, available resources, etc. Fortunately, she handed a stack of papers to me with the information in written form. My mind wandered as I thought about my baby, wondered how we ended up there, and worried about my lack of milk. Despite the mental fog, I do remember hearing her say, “You need to advocate for your baby.”

That statement perplexed me. What did she mean by advocate? They are the professionals. Won’t they always do what is best for my baby? I am at their mercy. I barely know a thing about medicine and even less about babies. I felt powerless. For what am I supposed to advocate? It did not really make sense at the time. However, I remembered her making that remark.

During Charlie’s first two months in the NICU, she was at a very large hospital with a giant open NICU. There was not much reason I felt the need to advocate. It seemed like a waiting game. Everything changed when it was time for her transfer.

Once she was well enough, we were planning on having Charlie transfered to a smaller hospital with private NICU rooms. I felt like I was losing my mind being constantly on display in the big NICU. I did not mind the nurses. The other babies’ visitors were the people I had an issue with.

I was crushed each time I would hear, “I did not know babies that were that small could live!” as people walked by Charlie’s isolette. People who could not resist the urge to peek over the screen on the few occasions I was able to kangaroo with Charlie were annoying. It angered me when people in the NICU waiting room would let their children run wild while other families were receiving devastating news in the same space. Worst of all, were the people whom insisted they weren’t sick when a nurse asked them about a cough or sniffle. Inevitably, the whole NICU room (it happened three times during Charlie’s two months) would be “in isolation” the next week due to outbreak of illness.

The staff and nurses were great. I grew weary of the other people. The lack of privacy was starting to affect my baby’s care. Kangaroo care was not allowed during isolation and I did not want her to have an illness brought in to her.

Finally, the day came that Charlie was declared a “feeder grower”. It meant she was well enough for transfer. My husband and I were ecstatic. Our drive to the hospital would be much shorter and we could have our privacy! It would be one step closer to home.

We anxiously waited days for the transfer to happen. Each day, we were told that it was time. However, “It will probably happen tomorrow” was all that we were told.

After a week, I had enough. I told my husband, “I’m not leaving the hospital today until I get Charlie out.” I sent emails and had a face to face meeting. Charlie was scheduled to transfer in less than twenty four hours. In short, the problem was that she was lost in the system. I don’t know how long we would have waited had I not decided to speak up.

That was my first experience of advocating in Charlie’s care. At the time, I felt guilty for raising a fuss. I was concerned that I was creating problems. In hind sight, I do not regret it and see that it was necessary.

Later, there were smaller issues in which I needed to speak up. For example, there was a visit with a particular specialist. She asked, “Why is Charlie wearing pink?” as she entered the exam room. I was not offended. Things like that happen with a name like Charlie. When I explained Charlie was a girl, the doctor told me that if I wanted to call my baby Charlie then I should have named her Charlotte. After she inquired why Charlie was so small, I requested Charlie be examined by another doctor.

The biggest and most recent example of advocacy occurred when Charlie could not move. I was told by numerous health professionals to “wait and see”. However, I knew that something was “not right”.

She missed all of her milestones at three months (adjusted). At six months, we were still waiting. I saw the look on the faces of medical personnel as they examined her. It was the look of quiet concern. I saw that look plenty of times during the three and a half months she and I were hospitalized. I wanted someone to come up with a plan rather than “wait and see”. I made sure that Charlie’s case was not handed off or left needlessly waiting. I asked questions and prodded for action. Mostly, I made sure that Charlie got the care she needed.

In the end, it does not matter to me if I come of as neurotic, pushy, obnoxious, or difficult. It is about Charlie, not me. What matters is that Charlie receive every opportunity to have a healthy and well adjusted life.

To me, being an advocate does not mean making sure that things are always fair. That would be an endless and impossible task because life is not fair. Instead, being an advocate means speaking up so Charlie gets what she needs.

I consider it fortuitous that out of everything that social worker said, I heard her instructions to advocate.

park1


Guilt

In my conversations with other NICU moms, guilt is a theme that makes a regular appearance. While the emotion is the same, the reasons each person experiences it vary. I have heard other moms say that they feel guilty that their bodies failed. Another mom in the NICU told me that she felt guilty for folding a load of laundry while on ordered bed rest. Similarly to these moms, I have my own and different sources of guilt.

My initial guilt stems from ignoring my instinct. At twenty weeks, I started seeing spots. I was alarmed by the leap my usually low blood pressure made when the opposite was expected. My instincts were screaming that something was not quite right. I feel guilty that I listened to other people when they dismissed my concerns as “part of being pregnant”. I feel guilty for allowing myself to believe when I was told that “everything is fine”.

I wish I would have listened more to myself and less to others.  However, this guilt was a painful lesson that served me later. I refused to “wait and see”  as advised when Charlie started displaying motor problems and sought intervention. This bit of guilt serves a purpose. Because of this, I am finding it possible to slowly let go of it.

The rest of my guilt emerges from the NICU. I felt guilty for falling to pieces when Charlie was born. I felt guilty for mourning, for being angry, for the days when all I could do was cry in front of her isolette, for all the jealousy I felt, and the resentment I harbored. I felt guilty for feeling those things because I thought I was better than that. I felt guilty for being so petty and small. I found out later that all of those feelings are normal and part of the process. That bit of knowledge made it easier for me to work through that guilt.

Then, there is the guilt I have yet to reason with. I feel guilty that my baby survived the NICU. There was a baby that passed while Charlie was in the NICU. As I watched those sobbing parents prepare to say good bye, I knew that it was purely luck that it was not me preparing to lose Charlie. On occasion, I meet other NICU parents who were not as fortunate as we were and I feel guilty. Because I know we were lucky, I feel guilty when I grow tired, weary, sad, frustrated, and angry about our lot.  This is the remaining aspect of guilt that I have trouble with. I am not sure what the answer is to relieve it.

With the passing of time, reading, and talking to other NICU moms, I have been able to come to terms with a large portion of my guilty feelings. I hope with more time, reflection, and discussion that I will one day be free of the remaining guilt. It is a heavy burden to needlessly carry around.


%d bloggers like this: