Most birth stories start with the day you were born. But
I’m going to start Tennyson’s birth story 2 days before she was born.
Parents love to talk about the day their children were born.
They want to detail every single amazing (or painful – depending on the mom)
moment they went through until they got to meet their baby, whom, let’s be
honest, was probably past his or her due date and was therefore, larger than
expected…my story is a little different –
okay it’s a lot different.
The last picture I have of myself while pregnant |
It was a Sunday. I was at the gym walking (really slow)
on the treadmill. I had been doing this every other day for a couple months.
Tenny and I had developed a little routine. Mom does anything remotely resembling
exercise – Tenny wiggles around like she’s dancing in mommy’s tummy. So I found it a little odd that day, when
after walking (really slow) on the treadmill, Tenny didn’t do her little dance.
I paid attention. I gave her a little push and told her to wake up. She was
being stubborn. I let it go and went about my day, which usually consisted of
sitting on the couch with my feet set on top of the ottoman in front of me,
while I watched, “A Baby Story”.
At night, when I laid down, Tenn was always active. I
always felt her at night and in the morning. Sunday night came and still no
movement. I started to panic…that kind of panic where your mind instantly goes
to the worst case scenario - when your chest
tightens and you think of every ‘what if’ situation it could be. Then you try to talk
yourself out of the worst case and ‘what if’ scenarios and you tell yourself everything
is probably just fine and you are worrying for no reason. I told my baby I’d
give her until the morning to start wiggling like normal. I felt like something
was wrong though.
If I could have
one do-over…knowing what I know now….I would have gone to the hospital that
night. But we don’t get do-overs and I’m okay with that now.
I woke up the next morning and waited for my baby to
start her wiggling. I laid in bed and talked to her and tried the usual things
that made her move. I didn’t feel anything. I was really scared now. I didn’t
want to worry my husband, but I called the hospital and told them that I
couldn’t feel my baby moving. The nurse told me that I needed to come in and be
checked.
I cried as I drove to the hospital.
No movement still, just a silent belly. Was my baby alive? I had a 30 minute
drive to worry and cry and when I got to the hospital I wiped away my tears and
put on a smile that showed I wasn’t really worried, that I was just doing this
as a formality. A smile that said “I’m sure everything is fine”.
The nurse took me to a room and hooked us both up to
monitors. She looked for her heartbeat and had trouble finding it, but then all
of a sudden, like a little drum being played, she found it. Thump, thump,
thump, thump, thump…I just started crying all over again. She was alive. She
had a heartbeat. The nurse asked if I was okay and I told her I thought that my
baby had died because I hadn’t felt her move. The nurse got me a wash cloth and
I wiped my tears away.
My relief was short lived. The fetal monitoring strip showed what I already knew. Tennyson wasn’t moving
like she should have been. The nurse was moving in and out of the room. She
asked me to drink some water. She asked me to drink a soda. Finally, they just
ordered me lunch and told me to eat something. I had been there for about 3
hours. The nurse said they like to see a baby have at least six good movements
an hour. Tennyson was having only 2-3. My husband joined me at the hospital
after I called him and told him what was happening. I was beginning to relax. I
figured we were in the best place that we could be – at a hospital being monitored.
A man came into our room dressed in plain clothes. He
didn’t introduce himself as a doctor. He asked me why I was there and I
actually thought he could have been a janitor. I don’t think I even realized
that he was a doctor until the nurse came in and started filling him in about
us. After about 4 hours of monitoring and no improvement from Tennyson, the
doctor decided to do an ultrasound. He wanted to see and make sure she had
enough fluid around her to be able to move. After a couple broken ultrasound
machines and a walk down the hall, the ultrasound showed that Tennyson had fluid
to move. That was it. He sent me home and told me to come back the following
day for a non-stress test.
I should have been feeling relieved. But I wasn’t.
Something was wrong, but I trusted that doctor. I trusted that he looked at
Tennyson and saw that she was okay. I trusted that he did his job to check on
my baby. If he had done his job – if he had done a complete biophysical
profile- he would have seen that Tennyson wasn’t doing well. He would have seen
that what should have been a 35 week gestation baby (5-6 pounds) was the size
of a 30 week gestation baby (2-3 pounds). I didn’t know anything different, but
to trust him. I had never been through this before and I trusted he was making
the best choices for us.
We went out to dinner with friends that night, and
afterwards we watched “Terminator 2”. Ironic, right? My baby was basically
dying inside of me that night. She was being deprived of precious blood and oxygen
to her tiny body that was barely getting enough to survive. Not even enough to
move.
Do-over #2 would have been to leave that hospital and
drive straight to another hospital. Tennyson should have been born that day.
But we don’t get do-overs and I’m okay with that now.
So I went to sleep that night, holding my belly, waiting
to feel even the tiniest movement from her. A sign that she was okay, but I
didn’t feel anything.
{There’s a reason doctors tell you to count
your kicks, ladies. I get that some babies are lazy. But if everything is truly
fine with your baby – the doctor will be able to show you and prove it to you.
Our baby wasn’t lazy – she was dying!} Can you tell I just got really angry thinking
about that day.....? {deep breath}
Morning came again with a silent belly. No movement. My
husband and I were both anxious to get to the hospital and see what was going
on with our baby. We actually had a pregnancy class at the hospital that day,
so we went a couple hours before the class to get our non-stress test (NST).
We arrived at the hospital and the nurses looked confused
and annoyed that we were there.
Nurse: “Are you high-risk?”
Me: No
Nurse: “Have you had a complicated pregnancy?”
Me: No
Nurse: “So why are you here?”
Me: “Well we were here yesterday because my baby isn’t
moving , they sent us home and told us to come back and get a NST today.”
Nurse: “Okay, have you been getting NSTs?”
Me: “No.”
So she took us back and hooked me up. She found
Tennyson’s heartbeat, and again, I was instantly relieved by the sound of it.
She watched the strip for about 30 seconds and left the room. She came back in
with another nurse. She pointed to something on the screen and then they left
again. This time, my mid-wife came in the room with them. She watched the
screen and asked me about my visit the day prior. I filled her in and she kept
watching the screen. She said what I already knew. My baby wasn’t moving the
way she was supposed to be. She took a handheld buzzer and told me she was
going to see how Tennyson reacted to it. (((((BUZZ))))). Nothing happened on
the screen. She didn’t move or react.
A doctor came in and introduced herself. I liked her. She
said kindly, but firmly, that my baby was telling her something. She said that
my baby was telling her she was not happy in the environment she was in. She needed to come of out of my belly as soon as
possible. I remember asking my midwife if
I could have a regular delivery instead of a c-section (you see how clearly I
was thinking?). Looking back that makes me laugh now – Midwife: “You need an
emergency c-section”, Me: “yeah I don’t want a c-section, can I have a natural
delivery?” Midwife:“No, you don’t have a choice”, Me: “Oh, okay.”. Then came
the tears…”we aren’t ready for her to come yet, we don’t even have anywhere for
her to sleep!” And then I remembered that it was adamantly made clear during
our birthing classes that they would not deliver any baby before 36 weeks. They
had said they just didn’t have the capability to support an infant under 36
weeks. When I cried this to the midwife, she said, “We don’t have a choice. She
needs to come out now.” The doctor was going to deliver my baby.
Any dreams of the birth I had planned for were quickly
crumpled up into a ball and thrown in the trash.
I was taken to get an I.V. placed. For some reason, the
nurses thought this was a good time to let the training nurse try to place an
I.V. It was also a great time to hand me
brochures on shaken baby syndrome and purple crying. Really? Was that the best time to give me those? Also in that
instant they needed our baby’s name. We had mostly concluded that her name
would be Tennyson, so Tennyson she was. After
4 tries from 3 different nurses later, I had my I.V. From the time the decision
was made for a c-section until I went to the operating room was an hour and a
half.
I told my husband to call my Mom and tell her what was
happening. He could not reach her so he called my older sister.
The anesthesiologist was ready to place my epidural and
it was just him, a nurse, and me in the room while he placed it. I remember the
nurse telling him a quick back story of why I was having an emergency
c-section. I remember her telling him that I had been sent home the day before
and when I looked at her she was giving him a look like – Can you believe they sent her home? The anesthesiologist said that
he couldn’t believe he was not called in because he was on call yesterday.
The epidural didn’t hurt. It was actually a calm moment
for me. As soon as I received the epidural people piled into the room; doctors,
nurses, and my husband.
I couldn’t control my body from shaking. I was nervous and scared for my baby. But I
had been reassured she would be 5-6lbs and that she would likely do fine.
I asked my husband if they had started yet. He said they
had. I didn’t feel anything. He stood over me with his hands on my shoulders,
watching it all. Nobody was saying anything. A few minutes later I asked him if
he could see her yet. He told me she was out already. She was blue. She wasn’t
breathing. He told me she was really small. They didn’t have the right size
tube to intubate her. I could hear the nurses saying over and over that they
needed a size one and that they only had a size three. One nurse rushes out. My
husband said they were using a bag to help her breathe. They took her away to
work on her. She never cried. I never got to see her. I never got to touch her,
or kiss her, or tell her I loved her. My husband went with her. So there I was - alone on an operating table
with strangers all around me trying to make small talk to keep my mind off of
what had just happened. “Where are you from? Do you have family near here?”
“No.” I replied.
Tennyson was 2 pounds 15 ounces, born on September 8th,
2009.
Tennyson within an hour of her birth |
I had one nurse that stayed with me the entire time after
the surgery. She had not been there the day before. She put warm heavy blankets
on me. I was given pain medication. I tried to rest, but I wanted to hear how
Tennyson was doing. My husband said that once Tenn had been in the nursery for
just a few minutes that they determined she needed to be air lifted to the
children’s hospital in Louisville. My midwife snapped a picture of her and
brought it to me. They called for a transport team and it took them at least an
hour and a half for them to arrive. Before they left with her, they brought her
in for me to meet her. They said they needed to leave so I only had a couple
minutes with her. I couldn’t hold her. She was in an isolette with cords and
tubes all around. It was such an awkward way to meet my baby – everyone staring
at our first moment together, watching me, and hearing my first words to her. I
didn’t know what to say. But I know I told her I loved her. She looked nothing
like I imagined. She had dark hair and dark eyes. She didn’t look well. She
didn’t move or blink. She just stared right through me. I touched her hand and
her limp little fingers. Then they took her. My husband came in the room and
sat with me. Some friends that were pregnant as well came in after their
pregnancy class had finished (which we were supposed to attend that day). Right
about that time the pain medicine kicked in and I don’t even remember our
conversation. I do remember looking out the window of our hospital room and
seeing the helicopter flying away with my baby.
Tennsyon shortly after arriving at the Kosair Children's Hospital |
My husband left shortly after to make the drive to Kosair
Children’s Hospital in Louisville, KY.
My family started calling. Everyone wanted to know how
Tenny was and I just had to tell them I didn’t know anything yet. Most of the
phone calls I didn’t answer. I don’t think I had absorbed what just happened. I
was in shock. I didn’t really want to talk to anyone. They took me to my own
room and I laid and waited for any news about my baby.
People think you get rest in the hospital…but you don’t.
People come in every hour it seems to give you medicine, check your vitals,
check your blood pressure, to ask how you are, to tell you to pump (and then
watch you do it to make sure you are doing it right – awesome), the nurses come
in, then the doctors check in, then the mid wife comes to check on you, then
there is paperwork to be filled out, the chaplain comes by, the lactation
consultant comes by, now you need to get up and walk, don’t forget to eat and
drink water, go to the bathroom, visitors come by (they are ok though), nurses
come in to push on your belly to make sure it’s shrinking okay, flowers are
delivered (they are okay too)…that sums up that first day of Tennyson’s life
for me. She was still pretty busy...
My husband came back to the hospital that night to stay
with me. He had some pictures of her. She looked swollen and nothing like the
baby I met earlier. The news wasn’t good. She had started having seizures
followed by apnea every fifteen minutes.
I remember thinking that she wasn’t going to make it
through the night. I had never heard of babies having seizures. But I was too
afraid of the answer, if I asked if my baby was going to live.
My husband got up early and made the drive back to the
hospital to be with Tennyson. I cried pretty much that entire day. The emotions
finally came and I couldn’t understand how we got to the place we were. What
went wrong? Why did things go wrong? What did I do wrong? Why didn’t anyone
know that she was so small? Why did they send me home the first day? Why was
this happening to us? I probably looked pretty pitiful that day. My nurse that
day was this wonderful woman – a big black lady who had a kind voice. She had a
deep southern accent and she sat with me and just told me to cry – “just get it
out, darlin” I remember her saying over and over. She didn’t tell me stop or
try and change the subject. I was grieving. I was grieving for the abrupt end
of my pregnancy, for the baby I thought I would have, for the birth I had
planned for, for the uncertain future of my new little family.
The nurse called the pediatrician and had her contact the
children’s hospital so I could have an update on Tennyson (no cell phones
allowed in the NICU, so I didn’t hear from my husband often). The pediatrician
came in and told me in medical lingo what was going on. I was crying and I said,
“I don’t even know what that means!” She stopped and realized I was not in any
position to process what she was saying. She wrote it all down for me in normal
words so I could have it to read when my eyes weren’t blurry from crying.
My husband came back that night and I was doing better. I
could only cry for so long before my nose was plugged and my head hurt. There
would be plenty more tears to come, but I was eager to be released the
following morning so I could go see Tennyson. Tennyson continuously had seizures
and apnea all day.
{Funny side
story: I had not packed my hospital bag,
so my husband had to go home and grab some clothes for me to wear to leave the
hospital in. He brought me pre-pregnancy clothes…you know, since I wasn’t
pregnant…and I shoved myself into those bad boys and looked like a stuffed
sausage when I left the next morning. Let this be a warning ladies – pack your
own bag and early!}
I was released and arrived at the children’s hospital.
Tennyson’s seizures were mostly under control. The apnea had stopped. She
already looked better than the pictures I had seen of her. She was hooked up to
a video EEG to monitor any seizures that might be occurring that we couldn’t
see. She slept most of the time, but had moments of being awake. That day was
like a crash course at medical school. Nurses explained what the alarms were
doing and why, while neonatologists and
neurologists gave us updates. One doctor that my husband warned me about took
my husband and me to a small room. My husband told me this doctor had a
sobering way of talking about the future. He told us we needed to be prepared
for a long road ahead and that we needed to start thinking about Tennyson’s
future in terms of her quality of life. I remember he said that it was just too
bad that this happened to us. He said we looked like nice people. He already
knew that Tennyson had a brain injury and that we were in for years of
developmental delays. My husband and I were still hoping this was just
temporary and she would be fine.
The next day was the first day I held my baby. She was
taken off oxygen supply and she had her first taste of milk. She also had an
MRI of her brain to see what damage had been done.
My first time holding Tennyson |
This sweet little girl had rocked our world and sent us
down a path less traveled.
My Mom flew in to be with us. She was such a proud new
Grandma. She had instant unconditional love for her. I could see it when she
held her for the first time. She ooh’d and ahh’d over a yawn or a stretch,
while I scrutinized every movement Tennyson made. I asked myself if that looked
normal or if it was what a typical baby would do. Knowing what I know now, I wish I could go
back in time at tell myself not to mourn all the things Tennyson wasn’t and
that she was more than I could have dreamed of. I wish I could tell myself to
not give a crap about “normal”! I wish I could tell myself about all the good
times that were to come – all the giggles and smiles and adventures and
wonderful memories. I wish I could tell myself how HAPPY we would be; how THANKFUL
we would be that we have this sweet miracle. I can’t imagine not knowing my
daughter; not knowing her adorable personality. I don’t ever want to know what
life would be like without her here with us.
My Mom with Tennyson |
The following Monday was September 14, 2009. Who would
have thought things could get worse? That morning was when Sarah called me
about Andrew’s death. Later that afternoon, we received the MRI results. My Mom
and I were sitting next to Tennyson’s tiny isolette when the doctor came to
tell us exactly what we had hoped we wouldn’t hear. Some white matter in her brain
had been damaged. The doctor said that a neurologist would talk to us and show
us the MRI so we could see what they had seen. I cried and my Mom cried, and
she said to me, “you know what? You are her Mama; you are all she needs”. I
guess I knew it was bad when my Mom cried. She’s a nurse, so she understood the
medical jargon that I didn’t. In the end Tennyson’s first diagnosis for her
first year was Hypoxic Ischemic Encephalopathy (HIE).
Broken down it means Hypoxic:
lack of oxygen, Ischemic: lack of
blood supply, Encephalopathy: brain
injury.
So my husband and I sat by her side every day. He would
post a new Alfred, Lord Tennyson poem each day on her isolette. This seemed to keep the doctors and nurses by
her side just a few moments longer each visit. We
held her when we could, but we mostly watched her sleep. I remember one day
during quiet time in the NICU, my husband and I were having a whispering conversation
that turned into a really funny joke and before we knew it we were laughing
until we were crying. A nurse behind us started laughing because we were
laughing so hard. She told us she didn’t even hear why we were laughing, but
that it was nice to hear laughter. She said they didn’t hear it very often in
the NICU. In that moment I knew we would be okay - no matter what happened. We
were still able to laugh together during the most difficult point in our lives.
Tennyson made great progress during the next 2 weeks. She
started eating all of her bottles by mouth rather than through her NG tube
(tube through her nose). She was gaining weight, was more alert, and was
holding her temperature. We were able to take her oxygen sensor off, then the NG
tube was removed. She was a little NICU champ! She had a fighting spirit from
the beginning and we were proud of her.
We brought her home on September 27th. She was
3 pounds 15 ounces. We spent 3 weeks in the hospital and we were ready to
settle into a routine together at home.
I feel like I could keep writing – but I just realized I
wrote about her birth story and her NICU stay…if you’ve made it this far, I
think you deserve a medal! Thank you for reading and please feel free to share
with anyone who you think might enjoy.
If you learn one thing from our story – trust your own
instincts and intuition - that gut feeling God gave you! NOBODY, will care about your baby as much as
YOU do.
Thanks for reading,
Amy
Tennyson is blessed to have you as hers! Your strength moves me and I wish I could sit and talk with you and meet sweet Tennyson. And I also firmly believe in listening to your gut!
ReplyDeleteAbsolutely beautiful Amy!! Thank you for sharing! (By the way, she gets her adorable personality from her adorable parents! You two are amazing.) Can't wait for the next post. Love to all three of you.
ReplyDeleteWhat a well written blog! My son has some of the same start. I felt much of what you felt. He is number 4! My welcome home from Iraq gift. His bi-physical u/s was a two. Our MRI concluded that our baby would be a vegetable and were advised to sign a dnr. He has his issues...okay...lots of issues but he walks far from a vegetable...I am guessing they meant he wouldn't eat vegetable!:) I look forward to reading more!
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ReplyDeleteI LIKE TO KNOW HOW SHE IS DOING NOW AND TO SAY THANK YOU FOR SHARE YOUR STORY
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ReplyDeleteAmy, even as your BFF I don't think I fully understood everything you were going through when I had made that call to you. My heart sank heavy reading this post, but it's so nice to see all the hope on the other side now...to be out of the valley, per say. I love you so much and you have been such an encouragement to me...you definitely run the race set before you with perseverance. You are so dear to me and I'm thankful for our friendship. Thank you for writing this.
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ReplyDeleteI have no idea what to say. I am speechless and in floods of tears. I just wanted you to know I had read it and to thank you for sharing something so painful.
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