Tennyson's Birth Story

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 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 8^th, 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!}

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 27^th. 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.

 

 

If you are a parent of a child diagnosed with Hypoxic Ischemic Encephalopathy, there are support groups out there. After two years, I finally found other parents who can relate to what we went through. I remember spending hours on the computer trying to find information about HIE when Tennyson was first diagnosed. There was very little information that was intended for parents of children starting out on this journey. The little information I did find, painted a very dark picture.

 

There are families whose children have amazing outcomes - who have developed normally. We had prayed for Tennyson to be one of those children, but that has not happened. The support groups are private, for many reasons, but I would be happy to connect you with the support groups I am part of if you simply e-mail me. This journey can make parents feel very isolated. You are not alone.

 

tennsense@gmail.com