I'm adding an intro to this one because we're doing it a little differently. Instead of answering questions, RaeLee's mom has decided to share her full story, written out!
Ginger (mom) and he family are the Tri-State Ambassador Family for the March of Dimes, 2017! This includes many speaking engagements this year and participating in the March For Babies Walk in Ashland, KY on April 22, 2017. Click on that link for more information and how to join the event and/or donate. As their events get closer, I'll share them on the Come What May Facebook page.
Hello,
Ginger (mom) and he family are the Tri-State Ambassador Family for the March of Dimes, 2017! This includes many speaking engagements this year and participating in the March For Babies Walk in Ashland, KY on April 22, 2017. Click on that link for more information and how to join the event and/or donate. As their events get closer, I'll share them on the Come What May Facebook page.
Hello,
My name is Ginger Sweat. For 15 years my husband and I tried
to have a child of our own. I was told
at age 16 that I would probably never be able to conceive. In 2011 we decided it was time to go and see
a fertility specialist. He began running
tests and monitoring us. I began taking
some medications to help move things along and shortly after we began, we found
out we were expecting. We could not have
been more excited. Our heads were filled
with all sorts of thoughts of what was to come.
One thing I never even considered was having a premature baby. Having
our little girl as early as 23 weeks gestation never crossed either of our minds.
I did everything by the book during my pregnancy. I followed every doctors' order, I steered clear of any questionable foods, cut caffeine completely out, and took my prenatal vitamin everyday. I never missed a doctor appointment and never hesitated to call in if I felt uneasy about anything. In fact, at my last appointment--two days before going into labor--I had an exam, ekg, and consultation. The doctor sent us away feeling overjoyed with what he called our “perfect pregnancy.” The next day while at work I began having contractions. Everyone assured me that they were just Braxton Hicks and everything was fine. At first I thought I was just overreacting, but after some reading I realized what I was feeling didn’t seem to fit the definition. These contractions were very painful and were coming steadily, every few minutes. A coworker and trusted friend eventually convinced me that I needed to go to the hospital.
After a panicky ride to the hospital with my husband, we
were quickly taken into a triage room where they did an exam. Contrary to the
sinking feeling in my stomach, I quietly prayed that they would laugh, pat me
on the back, tell me I just needed to toughen up and send us on our way. I couldn’t
have been more wrong. I heard the words “dilated
to 4” and immediately felt as though I was free-falling into oblivion. All I
could think of was how early it was and how much I loved my baby. We had just found out that she was a girl and now
we were on the brink of losing her.
After an agonizing hour in the triage room, we were put into
a room and I began to receive magnesium. The hope was that the contractions
would be stopped. Even with my body
screaming that something was terribly wrong, I was still able to delude myself
into believing that this was some sort of magical cure and Jeremy and I would be back home before
long. After the second bag of magnesium I
was able to get the courage to ask when I would start to feel the contractions
stopping. Immediately I could see it in their faces. The words that followed
were just a formality. The nurse
tearfully advised me that magnesium would work for some women and not
others. I needed to hang on long enough
to get 2 rounds of steroids for the baby's very immature lungs, and that I
would be there until I delivered. Be that in the next few hours, or in the next
three months.
Now it was time for the neonatologist to come in and talk with
us. As the situation became clearer to Jeremy and me, we decided to ask him to
be straight-forward in explaining our circumstances. This was definitely not a
time where we wanted things to be sugar coated. Within a few sentences we had a
vastly different understanding about how our baby was going to come into this
world. He began to explain how extremely immature her lungs were, and that this
would by far be the biggest challenge.
He made sure we understood that upon birth she would need
immediate life support.
Next was an explanation of the unfortunate reality that the equipment needed to treat our daughter is simply not made small enough to accommodate such a tiny baby, and that if we decided to have the doctors attempt to save her life, they could actually do irreparable damage. We were also told to expect her to have a brain bleed. Obviously this type of information would shake any expectant parents to their core, without the terrible details that followed. A brain bleed could cause her to never walk or talk. She could be severely physically and developmentally impaired. The nature of her extreme prematurity could leave her blind or deaf. She may have to have extremities or even whole limbs amputated. She may be in a wheelchair or even bedridden for life. Needless to say, the chances of her experiencing a “normal” life should not be expected. Then came a long discussion on the possibilities of her having cerebral palsy, autism, or any number of lifelong debilitating illnesses.
God gave her to me and brought her into this world for a reason and it is meant to be. Being an absolute professional, he calmly asked one last time if we wanted to use all lifesaving options. We again said yes.
Next was an explanation of the unfortunate reality that the equipment needed to treat our daughter is simply not made small enough to accommodate such a tiny baby, and that if we decided to have the doctors attempt to save her life, they could actually do irreparable damage. We were also told to expect her to have a brain bleed. Obviously this type of information would shake any expectant parents to their core, without the terrible details that followed. A brain bleed could cause her to never walk or talk. She could be severely physically and developmentally impaired. The nature of her extreme prematurity could leave her blind or deaf. She may have to have extremities or even whole limbs amputated. She may be in a wheelchair or even bedridden for life. Needless to say, the chances of her experiencing a “normal” life should not be expected. Then came a long discussion on the possibilities of her having cerebral palsy, autism, or any number of lifelong debilitating illnesses.
Without
hesitation, my response came pouring out. I would be her eyes, her ears, her legs, her
arms, her hands, her mouth, anything she needed. I would be that if he would just try to save
her.
God gave her to me and brought her into this world for a reason and it is meant to be. Being an absolute professional, he calmly asked one last time if we wanted to use all lifesaving options. We again said yes.
On 12/15/2012
our little RaeLee Elyse rushed into this world at
a staggering 12 inches long and weighing 1lb 4oz.
The circumstances of her birth would be traumatic for both of us. I delivered her foot breech vaginally. During delivery my cervix closed on her neck. Despite the best efforts of myself and the doctor, my cervix had to be cut twice to get her out. All of the pulling and tugging caused bruising so bad that it was unsure if she was getting circulation to any of her extremities. Her neck was also cut during the procedure causing her to need three sutures. This was all a blur to me while it was happening. The only thing I can remember during labor were passing images of all the dreams, hopes, and aspirations I had crashing down. I wasn’t even sure our baby had made it through the delivery. I noticed all the nurses had such big tears running down their faces. I just couldn’t imagine they would be crying like that if she had lived. It was in this moment of absolute despair that I heard the doctor ask if we wanted to see her. They quickly brought her over and I said “I love you RaeLee” as loud as I could muster. At that exact moment she opened one beautiful blue eye and looked right at me. It was love at first sight. From that moment on all I could focus on was her. I had never wanted anything so badly in all my life.
We spent 116 days in the NICU.
We have met so many wonderful people along this crazy journey. I know that God put us on this path for a reason. I believe that it is my duty to pass on the information that I have learned through my daughter. She has truly defied so many odds and has taught me not to give up, even when medical professionals would.
I also longed for someone who had been through similar circumstances to share with. While going through this rollercoaster so many people said that they “understood,” only I knew they really did not. No one I knew, family or otherwise, had ever had a 1lb. 4oz. baby who required life support to take her first breath. No one I knew had a baby so medically fragile that they were unable to hold them for over a month.
There are so many things I will never forget from the
nicu. Our nurses bonded with us so
intensely. I love them like my own
family. They made every milestone, no
matter how small, seem huge because it was to us.
I was afraid to ask and had waited so long. My timid mom walked right up to a nurse and asked when I would be able to hold her. They were there within 10 minutes and had her out and on my chest. All of her firsts- her first bottle, her first big girl bath in a tub, and her first diaper change. Most of all, I think the day that she was moved into a crib from an isolet was the best. I was having a particularly rough day-- we were in the process of moving into a new home which we had purchased at the beginning of the pregnancy and had been tremendously delayed due to her premature birth. The nurses put up signs and they didn’t tell me. It was huge a surprise when I walked in. Gone were the days of worrying that ventilator would come flying out of her mouth and onto the floor setting off all the alarms and causing her to desaturate and not breathe. All I could think about was how I would be able to hold her whenever I wanted. I would no longer have to ask permission. That is when it all hit me. We were going to make it home, we were going to be able to “normally” parent our baby and shower her with endless love.
The first time I was able to hold her was so
amazing.
I was afraid to ask and had waited so long. My timid mom walked right up to a nurse and asked when I would be able to hold her. They were there within 10 minutes and had her out and on my chest. All of her firsts- her first bottle, her first big girl bath in a tub, and her first diaper change. Most of all, I think the day that she was moved into a crib from an isolet was the best. I was having a particularly rough day-- we were in the process of moving into a new home which we had purchased at the beginning of the pregnancy and had been tremendously delayed due to her premature birth. The nurses put up signs and they didn’t tell me. It was huge a surprise when I walked in. Gone were the days of worrying that ventilator would come flying out of her mouth and onto the floor setting off all the alarms and causing her to desaturate and not breathe. All I could think about was how I would be able to hold her whenever I wanted. I would no longer have to ask permission. That is when it all hit me. We were going to make it home, we were going to be able to “normally” parent our baby and shower her with endless love.
A few other areas where I may be able to help families, aside
from the medical issues micros deal with inside the hospital, are some of the
issues they face following discharge and the transition home. I felt that it was vital to get early
intervention (called Birth to Three in WV). At her birth we were told that RaeLee may never walk or be mobile, so it was the first thing we worked on. We
had a Birth To Three team member in our home the day after discharge and Physical Therapy
started that week.
She did everything delayed and it wasn’t until she turned 1 year old that she could even sit up unassisted for mere seconds. The day after her birthday I asked for a speech consultation. I thought we were progressing so well, but in actuality we were severely behind with food and speech. I thought I was doing what was best for her with making her homemade purees and starting her on oatmeal. After our speech evaluation I learned that RaeLee had sensory processing issues that were exacerbated by her high arched palate, which was caused from being ventilated for so long.
We found out very quickly that she could understand everything; she just could not express it. She was unable to eat certain textures that we still work on to this day, such as rice and pasta. She has a very sensitive gag reflex so we dealt with lots of “getting sick.” We were able to work through the skin sensory issues with brushing techniques and the food issues are so much better, but still a work in progress. To this day, she needs to drink carnation instant breakfast at least twice a day for added calories as she is still extremely small, weighing in at 20lbs at 3 years old. This has also given us the diagnosis of “failure to thrive.” However, she is the definition of thriving considering her beginning.
These things, along with her weak immune system and lungs, are the reason we have done medical lockdown for the last 3 RSV/flu seasons and the reason we have a preschool teacher come to our home instead of sending her to a classroom. We fought hard to get her synagis (a shot to help lessen the effects of RSV if she caught it) for not only the first year, but the second year home as well.
She did everything delayed and it wasn’t until she turned 1 year old that she could even sit up unassisted for mere seconds. The day after her birthday I asked for a speech consultation. I thought we were progressing so well, but in actuality we were severely behind with food and speech. I thought I was doing what was best for her with making her homemade purees and starting her on oatmeal. After our speech evaluation I learned that RaeLee had sensory processing issues that were exacerbated by her high arched palate, which was caused from being ventilated for so long.
We found out very quickly that she could understand everything; she just could not express it. She was unable to eat certain textures that we still work on to this day, such as rice and pasta. She has a very sensitive gag reflex so we dealt with lots of “getting sick.” We were able to work through the skin sensory issues with brushing techniques and the food issues are so much better, but still a work in progress. To this day, she needs to drink carnation instant breakfast at least twice a day for added calories as she is still extremely small, weighing in at 20lbs at 3 years old. This has also given us the diagnosis of “failure to thrive.” However, she is the definition of thriving considering her beginning.
These things, along with her weak immune system and lungs, are the reason we have done medical lockdown for the last 3 RSV/flu seasons and the reason we have a preschool teacher come to our home instead of sending her to a classroom. We fought hard to get her synagis (a shot to help lessen the effects of RSV if she caught it) for not only the first year, but the second year home as well.
We have experienced about all the therapy there is out
there. RaeLee has been and is still
receiving speech/feeding/sensory therapy, physical therapy, occupational
therapy and developmental therapy. It
is suspected that she has sensory processing disorder, ADD, ADHD, hyperactivity, and along with her speech delay she also has apraxia.
I also can offer the experience of having a term pregnancy
after a micro. Just 2 months into our 4
month nicu stay we found out we were expecting again. We were completely surprised. I did have lots of monitoring, cervical
lengths, ultrasounds, ekgs, and progesterone shots, but did make it to term
with the help of a high risk team. We just figured it would take help if we
ever considered a second child. If it
were left up to me I probably would not have tried out of fear of another
preterm birth. God had other plans and He knew better than me.
My girls
are 10 months apart.
They are best
friends and help each other out more than I can explain.
Things that I think all nicu parents/guardians should know:
*There is help out there.
If you feel overwhelmed it is ok to find someone to talk to. Whether it
be a professional or simply a mentor/friend who has experienced similar
situations. There should be no shame in
admitting you have PTSD/Anxiety. I have
both and have learned how to manage it and even turn it into positivity.
*If your child needs help developmentally, physically, or
emotionally, there is help for them as well.
Get a head start on any concerns. Early intervention can only help; it
will not hinder your child.
*Don’t be afraid to ask questions. Whether in the nicu or outside, ask questions.
*Keep a journal, one day you or your child will want to see how far they have come.
*Always do what is best for you and your child, what works for one may not work for others.
*Always always always trust your instincts. You are your child's advocate. You must be your child's voice.
*Your child is special and always will be, look how hard they
had to fight to be here. Never forget
that, not all parents are so blessed.
Some only walk away with memories.
*Special children are given to special people!
*Special children are given to special people!
Some examples of resources/blogs/sites that Ginger found helpful are below:
Graham's Foundation: Supporting Parents of Preemies
The Tiny Footprints Project (NICU photography)
The Anxiety I Don't Talk About as a Special Needs Parent (The Mighty)
Skin to Skin Contact
NICU Journey Wishes - A Parent's Perspective
Care.com Support for Preemies With Learning Delays
There is also an app available called MYPREEMIE that offers emotional, intellectual, and practical help to parents on their smart phone or tablet.
There are lots of Facebook groups available, too. Examples:
Tiny Miracles - 23 Weekers or Earlier
24 Week Preemies
Micro Preemie Support Network
NICU PTSD Support Group
Micro Preemie Moms
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