The First Year

September 2009 was the start of our new life as a family. We brought Tennyson home from the hospital after a 3 week stay in the NICU and we were sent home with a long list of follow-up appointments she needed to go to. She had to go to the eye doctor, audiology, cardiology, her pediatrician, neonatologist, neurologist, and be enrolled in early intervention services. In the first month alone, she had more doctor appointments than most babies have in their first year.

One month old

To be honest though, she was a very different baby than the one we got to know in the hospital. She was thriving! She gained an entire pound during her first week home! She got big squishy cheeks and although she didn’t have any baby fat rolls, she looked really healthy. She settled into a good routine and we were genuinely enjoying getting to know her personality and being new parents. I loved dressing her up and giving her baths and snuggling with her in the mornings. As new parents we were exhausted and sleep deprived because we couldn’t get more than 2 hours of consecutive sleep at a time. It’s truly amazing how much you don’t appreciate sleep until you don’t get to sleep anymore. All those times I was able to sleep in, uninterrupted, until noon, were completely taken for granted.

6 weeks old

The first month home was an adjustment. My husband was back at work full time while I stayed at home and cared for Tennyson. She went home from the hospital on two seizure medicines and I worried regularly she would have a seizure while I was home alone with her. I was completely in love with my little girl. She had given us such clarity on what was really important in life. It was getting hard to believe the poor prognosis that had been given to her in the hospital. I hated taking her to the doctor. I always worried she would pick up a cold or a virus. {I don’t know why complete strangers think it’s okay to touch your baby!} The doctors would pull her legs and arms every which way in order to determine if her muscles had high or low tone, or if her body was regulating it properly. They checked reflexes and her eye tracking. Everyone was constantly evaluating her, writing down their own opinions and it was hard not to take their opinions personally. The doctors told me how critical the first two years were and I felt enormous pressure that my actions would directly affect how much she would be able to do later in life.

2 months old

One of the first times I left the house alone, I went to Walmart. Tenn was with the husband. I don’t know if it was just having the chance to be alone with my own thoughts for the first time or if I was just emotional in general, but I just sat in the parking lot and cried. I called my mom and told her I didn’t want to take Tennyson to any more appointments and that I hated taking her to them.  She told me I had to take her to them, and I knew I did, but I didn’t want to hear any more bad news. It was emotionally draining. Eventually I got used to hearing the same things . . .  “she has tight hips”, “she needs to work on her head control”, “her head isn’t growing at a normal rate.” I was doing everything and more they were telling me to do.

Tennyson's first Halloween

We moved from Kentucky to North Carolina when Tennyson was 3 months old. Moving with an infant was quite an experience. Looking back, I don’t even know how we did it! But we did. We transferred all of her medical care and doctors and set up new early intervention services.

Sleeping with Daddy

We went home for Christmas to introduce Tennyson to our family and friends that hadn’t met her yet. She did great. She started sleeping through the night while we were on that trip. She continued to sleep great for us when we returned home, which was a very welcome change.

3 months old

When I was pregnant I worried about random stuff . . . will she be good at sports, will she be smart, but never worried if her head will grow. When doctors started mentioning she may have microcephaly, I looked it up on google and did an image search. Worst idea ever. It scared me to death! I searched how to make the brain grow, like foods, and I couldn’t find anything that can make the brain grow. It was a really helpless feeling. I would measure her head before appointments to see if I was getting the same measurements as they were. I would argue with nurses over a quarter of a centimeter when we had different measurements. When I would give her a bath at night I’d say, “let’s wash your hair with the magic head growing shampoo”. I became obsessed with measuring her head and trying to explain away why she wasn’t catching up on the growth chart. I prayed a lot at night. I would fall asleep praying for her head to grow. But it just didn’t grow. She was diagnosed with microcephaly at 4 months of age by her neurologist.  She had x-rays taken to see if her sutures in her head had fused early which would prevent her brain from being able to grow, but the sutures were open. Eventually I just had to get over the fact that I couldn’t do anything to make her brain grow. That was hard. That was the first visual sign for me that her brain was damaged. Nobody could really tell by looking at her until about 9 or 10 months of age, when she was growing long, that there was something disproportionate about her body.

3 months old (again)

When a baby is born prematurely, his or her progress is tracked by two different ages: the real age and the adjusted age. To get a baby’s adjusted age, you subtract however many weeks early he or she is from the actual age. Tennyson was born 5 weeks early. So if her real age was 5 months (20 weeks) subtract 5 weeks from that and she would have been 15 weeks – or just at the end of 3 months for her adjusted age. I took it further than the doctors did though. When Tenn was born she was the size of a 30 week gestation baby so I subtracted another 5 weeks (from 20 weeks minus 5 for her adjusted age) and then I took into account that she just laid in the hospital for 3 weeks, so I would subtract 3 more weeks. So while everyone else expected her to be meeting 3 month old milestones, I gave her the benefit of the doubt and expected her to be at a 7 week old.

This helped me not worry too much when she failed to meet everyone else’s expectations. She started smiling around 3 ½ months old and I finally heard that sweet little giggle at 4months of age.

4 months old

She started physical therapy in January at 4 months old. She started out with an hour a week. Things were going well and although she wasn’t meeting milestones according to her real age, she wasn’t too far behind her adjusted age. She did show some improvement though.

That all changed when she hit 5 months of age. Her development for gross motor skills (sitting, crawling, and standing) came to a standstill. She also, had yet to develop any fine motor skills (talking and grasping) and still wasn’t reaching for toys. Her arms stayed by her sides. Even though she could track a toy visually, she never reached for them. Most of her physical therapy sessions were spent going through the motions of rolling over and deep stretching to loosen her muscles.

Tennyson at 5 months old

When her development stalled, I began to have anxiety attacks. I would wake up in the middle of the night and I literally thought I was going to die. My heart would beat so hard in my chest that I couldn’t think rationally about what was happening. At that time, I was still waiting for doctors to find answers about what had gone wrong with the placenta and why it had blood clots. The biopsy that came back from the placenta said I needed to be tested for blood clotting disorders, like lupus and protein C and S deficiencies. I lost my trust in doctors after Tennyson’s birth. I felt like they were missing something that could be wrong with me. I worried about blood clots constantly and was scared I would have a stroke. I ended up going to the emergency department one night because of chest pains and they did a full work up on me. They said I was healthy. It was really hard for me to believe them. I wouldn’t get any answers for another year.

{Just so you know, the night I made my husband go the emergency room with me, was the night the Saints won the Super Bowl! He missed the whole second half. What a guy!}

At 5 months old, I got Tennyson into occupational therapy as well as play therapy. I also enrolled her in Kindermusik classes. If Tennyson’s mind and body needed to be stimulated constantly in order to develop, then that’s what I was going to set up for her. She enjoyed her weekly music classes and it was our first chance to do something that “everyone else” was doing with their baby. It was fun and she responded with smiles and giggles. I really enjoyed the social part of it as well.

Getting bigger! 6 months old and so happy!

I worked with Tennyson for hours each day. Stretching, going through the motions of rolling, working on her visual tracking, and tummy time (which she absolutely hated!). I would put her on an exercise ball and use the law of gravity to stretch her muscles. She fell asleep each night and I stretched her for the second time. Still, there was no major development. Slowly it became obvious that Tennyson wouldn’t be like other kids. She wasn’t going to just be a little behind. I began to realize that development charts weren’t going to do anything, but make me think of her deficiencies. I put away the books on development and I focused on what she was doing, rather than what she was supposed to be doing. I listened to what doctors and therapists said about Tennyson and not a word that didn’t apply to her.

7 months old

At 7 months, she still wasn’t reaching for toys. Over and over and over and over I would place her hands on toys - showing her that she could hold them and play with them if she used her hands. When we learned that she was farsighted and had astigmatism, I special ordered her eyeglasses in hopes that allowing her to see clearly was all she needed to grab toys. She looked adorable in her glasses, but they didn’t make her want to grab toys yet.

8 months old

Then one day, around 9 months old, she did it. She grabbed a toy! It was the coolest moment! I was so incredibly happy. Not many other parents could appreciate what that meant to us. I bet I put her hands on those toys thousands of times. In my mind, I remember thinking, if I have to do every little skill thousands of times for her to learn it, I’ll do it. If that’s what she needs, I’ll do it. If that’s how her brain learns, I’ll do it.

We took a break from doctor appointments and therapies and went home for the summer to see family and friends in 2010. It was wonderful to have a mental break from all the evaluations and doctor appointments and a physical break because everyone wanted to get their hands on my sweet girl.

9 months old

We returned back to North Carolina and jumped back into a new routine with more therapies and new therapists. At that time, Tennyson was receiving about 6-7 therapies at our home a week. She wasn’t talking or sitting independently, and although she started to roll from her back to her tummy, that skill disappeared by the time she was around 11 months old. It was frustrating. We were both working so hard and it was certainly not her fault that her body wasn’t cooperating.

10 months old

I knew what was coming. I didn’t want to ask the question, but the time had come to just ask it and get it out there. I had an appointment with Tennyson’s developmental pediatrician. I asked her if Tennyson’s H.I.E. diagnosis would encompass her muscle tone issues or if I could expect another diagnosis soon. She said, “Are you talking about cerebral palsy?” and I told her, “Yes”. She said that in her opinion Tennyson would be diagnosed with cerebral palsy. I remember asking her if she could outgrow that diagnosis. She was honest and said that it was not likely she would.

11 months old

About a month later, the day before her first birthday, we saw her neurologist. My Mom came to visit for Tennyson’s birthday so she went with me to the appointment. I had a long list of questions for him and my Mom held Tennyson while I spoke with him. I worked my way down the list and eventually near the bottom was the same question I asked Tennyson’s developmental pediatrician. I could tell he was trying to be gentle in the way he was telling me what he was telling me. I thought I was prepared for the diagnosis, but I don’t think I was prepared to actually hear him say the words, “Your daughter has spastic diplegia cerebral palsy”. I was done with my list of questions and we talked for a few minutes about what that diagnosis meant and then we were finished. I didn’t cry in the office, but I did when we got outside. I’m thankful my Mom was there with me again. Mom always knows what to say. She said, “Look at her. She’s the same baby she was before we went in there - she’s no different”. She was right. I didn’t love her less or differently just because of a new label a doctor gave her. Life didn’t stop with a new diagnosis and so we kept on going.

Tennyson at her 1st birthday party

We celebrated her first birthday with my Mom and Tennyson’s Uncle and close friends. We reflected on where we were a year prior and just how far she had come in one year. She had a great party and looked absolutely adorable. We helped her open presents and ate cupcakes and pizza. We took a lot of photos and video. It was such a fun day!

For a girl so small at birth, she had come so far. Tennyson, has improved our lives tremendously. We have received many blessings and had many prayers answered.  

E-mail me at tennsens@gmail.com with any questions or feedback.

Amy

What's Not Wrong With Her

“What’s wrong with her?” If you ask me this question, I’m likely going to ask you, “What’s wrong with you?” There is nothing wrong with Tennyson - maybe different, but certainly not wrong. She is my normal. Even if it’s different to you, it feels normal to me. One scenario is typical for us: someone will ask, “how old is your little girl?” and I tell them how old she is, and they just say, “ooohhh.” It usually ends there. They have a sort of dumbstruck look on their face as they try and figure out what’s wrong with my sweet girl – trying to figure out why she isn’t doing what they expect her to be doing for that age. One time on a cross country flight, a flight attendant asked me if I had Tennyson tested for developmental delays. As if I wasn’t aware my child has developmental delays. I should have told her I just hadn’t gotten around to it, just to see her expression. Thanks, lady. I know this is a difficult question for an observer to ask, but there are better ways to approach us so my protective mommy instincts don’t kick in.

The best approach someone had with Tennyson was a nice compliment and then they simply asked, “May I ask what her diagnosis is?” At least she gave me more credit than the flight attendant did. She was just being curious and wanted to know more.

You won’t have to ask me, though, because her diagnoses are what I want to share with you today. Since one of the main reasons I started this whole blogging adventure is to educate people who want to know about her, it seems appropriate, rather than leaving you wondering. I have to admit, before I had Tennyson, I had no clue what any of these conditions were.

I guess I’ll start in order of appearance:

Severe IUGR:

Tennyson was diagnosed with this almost immediately after her birth. IUGR stands for Inter Uterine Growth Restriction (or Retardation, but I don’t prefer that word). It refers to the poor growth of a baby in the mother’s womb. The most common cause is a problem with the placenta. It can also be caused by infection, high blood pressure, smoking, drinking alcohol, abusing drugs, heart or kidney disease, or if you are having multiples (twins, triplets…etc.).

Tennyson on her birthday (to show you just how small she was!)

Hypoxic Ischemic Encephalopathy:

I talked about this diagnosis at the end of Tennyson’s birth story. She was diagnosed with this at 2 weeks of age. Broken down it means: Hypoxic: lack of oxygen, Ischemic: lack of blood, Encephalopathy: a specific brain injury. In other words, a brain injury caused by lack of oxygen and blood flow. When a baby’s brain has suffered from a lack of oxygen, it’s common for the baby to have seizures, have low APGAR scores, have varying muscle tone and reflexes (all of which Tennyson had). There are 3 degrees of HIE: mild, moderate, and severe. Tennyson was classified as having mild/moderate HIE.

Microcephaly:

Microcephaly is when the brain does not grow at a normal rate. Head circumference is measured from the forehead to the farthest point in the back of the head and is plotted on a growth chart. Tennyson was diagnosed with this at 4 months of age. There were concerns about her head circumference from about 2 months of age. Her head circumference at birth was 28 centimeters. Her head circumference now is 39 centimeters. A typical growth rate for a baby’s head is 1.5 to 2.5 centimeters a month. Her head size right now is the size that a typical baby’s head would be at 3 months of age. Tennyson is 28 months old.

GERD:

GERD stands for Gastroesophageal Reflux Disease. GERD is when the contents of the stomach go backwards into the esophagus. Tennyson was diagnosed “officially” at around 15 months…but we have been dealing with the effects of acid reflux since she was about 3 months old. She was put on her first reflux medicine, zantac, then prevacid, now she is on prilosec (among other meds). She has constantly had issues with spit-up and throw-up. There have been some scary throw-ups when she stopped breathing and it was so violent it came out her nose. Thank God for bulb syringes in those moments. They can save lives. Seriously. We worry about aspiration and because we know she does aspirate (when her food goes into her airway, rather than her esophagus) she has had multiple swallow studies.

Intermittent Esophoria:

This diagnosis came unexpectedly when Tennyson was 7 months old. Since Tenn was born early, her eyes were monitored for vision problems. Premature babies in general are more susceptible to vision problems since their eyes have not finished developing. It was determined early on, at 2 months of age, that her vision was good, a follow up at 3 months showed the same. Sometimes we noticed one of her eyes turned in when she was tired. When I asked the Ophthalmologist about this he did a really thorough exam and was able to see it. Intermittent Esophoria is when both eyes are open and can focus on a visual target, but occasionally one eye turns inward. This is improving as her eyes get stronger. She has prescription eyeglasses for farsightedness and astigmatism.

Tennyson - 4 months (example of intermittent esophoria)

Cerebral Palsy:

This is the diagnosis I knew in the back of my mind that was coming, but feared the most. Tennyson was diagnosed the day before her first birthday. Some children are bound to a wheelchair while others are much more functioning, but CP doesn’t necessarily mean the child isn’t smart or able to communicate.

CP occurs in about 1 out of every 1,000 births. Cerebral palsy is not progressive (it doesn’t get worse over time). You can’t catch it from anyone; you can’t test for it before your baby is born (I’ve been asked that one before). There is no cure - only management of the symptoms.  Cerebral Palsy is caused by an injury to the motor control areas of the brain. This can be anything from a lack of oxygen, a stroke, a brain bleed, a head injury, or an infection. CP prevents the brain from communicating with the muscles properly. I always think of it as the brain speaking English, but the muscles only understand Spanish. So any command the brain sends to the muscles, they don’t respond properly. There are different degrees of CP and different types. Cognitive ability is sometimes affected, but not in every case.

Tennyson has been diagnosed with Spastic Diplegia Cerebral Palsy. Spastic means muscle tightness. Diplegia CP means that it affects 2 of her limbs (the bottom half of her body). We are anticipating her diagnosis will eventually change to Quadriplegia Cerebral Palsy because she doesn’t move her arms or her legs typically. Quadriplegia CP means all 4 of her limbs are affected. She has the motor skills of a 5 month old. She doesn’t sit unsupported, crawl, bear weight on her legs, stand, or walk…yet. We learned early on that typical developmental timelines don’t apply to Tennyson. She is on her own timeline. But she is smart! She has a good understanding of the words and commands we say to her. She gets it.  

Oral Aversion & Dysphasia:

Imagine never enjoying food. Any experience with your mouth is unpleasant or painful and you never feel good because you are constantly throwing up. As adults, we know food is good. It brings us pleasure and it tastes good. It makes us feel good to fill our stomachs. A baby with oral aversion doesn’t know this because she hasn’t had any positive experiences with food. An adult will find a way to eat, but a baby will simply stop eating. That’s what happened to Tennyson. Oral aversion is a defensive behavior. Dysphasia complicates it by making it difficult to swallow safely and control food and saliva in the mouth. We have gone through phases of having to thicken her milk. She is on an all liquid diet, but we are making a lot of progress with her interest in food since she has had a G-tube placed. A G-tube is short for gastrostomy tube. It is a feeding tube that allows us to pump food directly into Tenn’s stomach and bypass her mouth.

Laryngeal Cleft (Type 2):

I never expected this diagnosis. This condition was found during an airway study last April. When a person swallows, there is a flap that covers the airway so the saliva or food goes into the stomach. That flap prevents food from going into the lungs. Tennyson’s “flap” had a hole in it. The “type 2” designates the size of the cleft. It can range from type 1 to type 4; the smaller the number the smaller the cleft. She had surgery last May to sew the 2 sides of the cleft together. She was one of the first children in the country to have her cleft repaired by a robot. We were told she had quite an audience of doctors and surgeons during her surgery. It healed perfectly and the hope is that she will eventually not aspirate any food or liquids.

Tennyson after her laryngeal cleft repair, May 2011

 Speech Apraxia:

As we neared the end of Tennyson’s first year, it was clear that Tennyson was developmentally delayed, so this was a diagnosis I expected. Speech Apraxia has to do with motor planning. Tennyson has been in speech therapy since 18 months of age (the earliest our insurance would cover it). She get’s speech therapy 2 times a week in our home and she is making progress. It was pretty clear from the start of speech therapy that Tennyson wanted to talk and copy what we were asking her to do. She has difficulty with the motor planning part of it, where her brain tells her muscles what to do to create the sounds she wants to.

Epilepsy:

By definition epilepsy is, “a brain disorder in which a person has repeated seizures over time” (2 or more seizures without an explainable cause). Although Tenny had seizures at birth, they were explained by her brain injury. They were well controlled and she was off her seizure meds by 4 months of age. She had one seizure at 8 months of age due to a high fever (this is a febrile seizure), but I honestly believed she would not have epilepsy. Last July she began having seizures regularly. They have been difficult to control. Her neurologist team has diagnosed them as “tonic spasms”. As a side note, infantile spasms are the worst kind of seizures and her tonic spasms are very similar and if uncontrolled could progress to infantile spasms.

Chromosome Abnormality:

I never expected this one either. We were referred to Genetics by our GI doctor.  Our GI doc thought it would be a good idea to see if there was anything metabolic going on genetically that was preventing her from wanting or being able to eat. Nothing was found that would help us with her feeding issues, but they did find a chromosome abnormality. It’s so rare, that Tennyson is only the 2^nd child in the world to be documented with it. There is another little boy in Finland who has it, but Tennyson is the only (documented) girl in the world with it. On one of her 19^th chromosomes, there is a small section of genes that is duplicated. It is called a micro-duplication. Because of the genes that are duplicated, they have told us that it could put her at a higher risk for heart problems or childhood cancers. After testing, however, Tennyson does not have any major problems like that.

Let me know if you have any questions about anything! I’d be happy to answer them! E-mail me at tennsense@gmail.com. Thanks for reading!

Amy

Why We Were at the Hospital (again) Today

Many of you wanted to know how Tennyson is doing now after reading her birth story. Overall she is doing well. I will continue with Tennyson’s history in the coming weeks, but I’ll share something current about her today.

I haven’t shared this with anyone except our close family and friends. Not for any significant reason other than it’s somewhat complex to explain.

Now that you know Tennyson’s story, you know that she was born really small. She was small because she was growth restricted. She was growth restricted because there were blood clots in the placenta. There were blood clots in the placenta most likely because of a gene mutation I have that was found months after her birth.

You have probably never heard of it, but some of you may have. The MTHFR (Methylene Tetrahydrafolate Reductase) gene helps the body breakdown and absorb folic acid and vitamin B. When a person has the gene mutation, the body may not produce the enzyme that breaks down and helps absorb those essential nutrients properly. I am a homozygous carrier of the MTHFR, meaning both copies of my gene are “mutated”.

Most of the time, women only find out they have it because they are unable to conceive or carry a pregnancy to term. In my case, I have been told it could be a relatively easy fix. I take a folic acid supplement. The idea is that if I take 10 times more folic acid that my body will hopefully absorb the proper amount like someone without the gene mutation.

So, what does this have to do with Tennyson?

Since I have 2 gene mutations, I know I have passed one of those on to Tennyson.

Less than a month ago, I came across a condition called Cerebral Folate Deficiency. As I was reading about it, a lot of the symptoms were similar to Tennyson’s. Her head slowed in growth at around 3-4 months of age. Her gross motor skills stalled at 5 months of age (and have remained there). She has delayed speech, she has irritable sleep, she started having seizures. She has spasticity in her muscles, but overall has low muscle tone. These are all symptomatic of CFD.

It was like I was reading about Tennyson in this medical article. I asked my husband to read it and he agreed. We both know all of Tennyson's symptoms can be attributed to cerebral palsy and the lack of oxygen and blood she suffered in utero or in the hours leading up to her birth. Some can also be attributed, however, to insufficient folic acid.

So I printed off my articles and underlined in RED every single thing that was similar between Tennyson and CFD.  I made an appointment with our neurology team. I rehearsed what I would say to them so they didn’t think I was a crazy mom who wanted her daughter tested for random conditions she found on the internet. I didn’t need to fight though! They thought it sounded reasonable to test her for it. Our neurology nurse practicioner pulled in a few other neurologists and did an exam. They went back and looked through old labwork and found indicators that she might have this deficiency.

I am glad I didn’t ignore how similar her symptoms were to this condition. I am not saying she has Cerebral Folate Deficiency. I am saying I have to be her advocate and find out if she does. It is my job to make sure she has all the tools she needs to reach her full potential – whatever that may be.  

The only way to test for CFD is through a lumbar puncture (drawing spinal fluid). The gene mutation can impair transport of folate from the blood to the brain. So brain levels of folate can be low, even if blood levels of folate are not.

That’s why we were at the hospital this morning. She had spinal fluid drawn and it will be tested. The team that was with her this morning said it couldn’t have gone better. I was only in the waiting room for about 10 minutes when they came out to tell me she was finished. The longest part was waiting for her to wake up from the anesthesia. Now, we have to wait two whole weeks before we know the results. I’m not going to lie, if she does have CFD, I will be pretty excited. If she doesn’t, it’s just one more thing we will know she doesn’t have. So I’m looking at it as a win-win situation. No disappointment.

Tennyson sleeping after her lumbar puncture

I want her to have this condition. I have been praying and praying and praying she has this! Why? Because it can be treated! Children with CFD that are given folinic acid (not folic acid) have made dramatic improvements within as little as a week of treatment beginning. Seizures can stop. Muscle tone can regulate. Speech and motor skills can progress. It would be pretty darn cool to see dramatic progress. As long as CFD is caught before the age of six, symptoms can reverse. After age 6, most kids do not have improvement with treatment.

I also want to share that this information might be helpful for people with children on the Autism spectrum. A lot of my reading on CFD talked about autism. This very recent article I found states that more children with autism spectrum disorders might actually have CFD. With proper diagnosis  of CFD and treatment, some children “showed  improvements  in seizures, attention, motor skills, neurological abnormalities, verbalizations, perseverative behavior, restricted interests, and social interaction in some children with autism.”

I hope this helps someone. Even if Tennyson doesn’t have it, it’s just another reminder that as parents we should always be the best advocates for our children.

e-mail me at tennsense@gmail.com with any feedback. I read it all.

Amy

Tennyson's Birth Story

I’m kind of dreading writing this story, but I’m going to do it anyways. We’ve come so far from those early days and it’s not easy to re-live them. The uncertainty, the pain, the anger, the sadness - not exactly the words people use to describe their baby’s birthdays.

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 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 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 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.

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.

E-mail me at tennsense@gmail.com . I read it all. I reply to it all.

Thanks for reading,

Amy

Hey Y'all

I hope y’all had a wonderful Christmas! We just returned from an after Christmas trip to Savannah, Georgia. (That’s where I picked up this southern accent from.). It seems to be a little tradition we have going. Last year we went to Asheville, North Carolina to see the Biltmore Mansion (highly recommended!). This year we took the train down to Savannah and ate at Paula Deen’s restaurant, “The Lady & Sons”. Amazing! The chicken pot pie was out of this world and I’m pretty sure if I ate like that every night I’d gain 10 pounds a week! I just love Paula Deen and how she says, “Hey Y’all!”. I’m gonna hug that lady one day. It’s on my bucket list, I guess.

At The Lady & Sons in Savannah, GA 

So it’s New Year’s Eve and I’m going to be ringing in 2012 with my sweet girl and The Husband. But there is one thing you can celebrate tomorrow other than New Year’s Day: Andrew’s Birthday! If you don’t know who Andrew is, you should definitely read about him here.

When I started my last post, I asked my BFF Sarah to write about Andrew and share his favorite bible verse. And she did! So, I’d like to share what she wrote:

I haven't written much at all about Andrew since he was killed. I know I should, but I just don't. One time I brought myself to write about 4 pages in a journal of quick memories I had that I didn't want to forget. That's it.

So...Here's all I can say about Andrew's bible verse.... He had a tattoo on his arm that read 'centurion'. He loved explaining to people what it meant if they asked...and probably even if they didn't ask. ;) The story that influenced the centurion tattoo was from the book of Matthew, chapter 8. The story of the centurion starts in verse 5. Here it is:

The Faith of the Centurion

⁵ When Jesus had entered Capernaum, a centurion came to him, asking for help. ⁶ “Lord,” he said, “my servant lies at home paralyzed, suffering terribly.”

⁷ Jesus said to him, “Shall I come and heal him?”

⁸ The centurion replied, “Lord, I do not deserve to have you come under my roof. But just say the word, and my servant will be healed. ⁹ For I myself am a man under authority, with soldiers under me. I tell this one, ‘Go,’ and he goes; and that one, ‘Come,’ and he comes. I say to my servant, ‘Do this,’ and he does it.”

¹⁰ When Jesus heard this, he was amazed and said to those following him, “Truly I tell you, I have not found anyone in Israel with such great faith. ¹¹ I say to you that many will come from the east and the west, and will take their places at the feast with Abraham, Isaac and Jacob in the kingdom of heaven. ¹² But the subjects of the kingdom will be thrown outside, into the darkness, where there will be weeping and gnashing of teeth.”

¹³ Then Jesus said to the centurion, “Go! Let it be done just as you believed it would.” And his servant was healed at that moment.

The thing that I think Andrew appreciated about this story was that it was about a soldier, who was a leader of men, yet he had humility and he definitely had faith! Andrew could and wanted to relate to this centurion and so he also liked to share this story to get to talk about Jesus and the Bible to anyone he could.

One of the things that amazed me most about Andrew and that I learned a lot from him was his faith. He had that child-like faith that is mentioned in the Bible. He would rest his hand on me and without me even knowing be praying for some pain I was complaining about earlier that day. A couple minutes later he would ask, "Hey, how is that pain now?"..."Actually", I said, "It’s gone...like it just left." He said, "I know." "You know?" "Yeah, I prayed about." His faith and relationship with God was just so matter of fact.

While he was deployed we learned about Tenny being born and right away I asked him to pray for her and Amy and her husband. I kept him up on every detail that would get passed to me and sometimes multiple times a day I got to talk to him to tell him how she was doing. I asked him to pray for her non-stop while he was out there working.

 Later that week I had my ultrasound on a Friday morning. Andrew called me the minute it was over so that I could tell him the news of a healthy baby with 10 fingers and 10 toes. We wanted to be surprised with the gender so I just shared with him that the baby had calf muscles like his and that it was "bootylicious" just like us! :) He cried .He was proud and excited. He also had to hang up because he would be on a small mission for a couple days and call me after the weekend.

 Monday morning is when the "green men" came and rang my doorbell, waking me from a lazy pregnant slumber. The rest of this story isn't really fitting for this blog, so I will stop here.

Sarah is a wonderful example of a faithful woman. I admire her faith and she is a huge source of inspiration for me. Thank you so much, Sarah! I really appreciate that you wrote that, and I’m sure I won’t be the only one! Happy Birthday, Andrew!!!

2011 was a roller coaster year, full of new information, and plans that changed unexpectedly – not uncommon in the Army I suppose. Here’s a quick wrap-up (in terms of Tennyson):

April :    We found out Tennyson had a Type 2 Laryngeal Cleft (more on this later)during an airway study. She also had her tongue “clipped” –aka- a Frenulectomy

May:      Tennyson had surgery to repair the laryngeal cleft

June:     Trip home to Washington for many friends and my sister’s wedding! Great trip!

July:       A couple days after we returned home, Tennyson began having seizures and was hospitalized and then diagnosed with epilepsy.

September:  Three trips to the ER and a slew of minor infections

October: Tennyson had a Gastrostomy Tube (G-Tube) placed.

November: Hospitalized again due to weight loss. (Nobody mentioned the volcano-erupting vomit that could come from placing a g-tube) Sheesh!

December: Seizures have continued on a daily basis despite medicine doses increasing, but we have something in the works with our Neurology team that we are hopeful about.(more on that later too!)

I’ve been making my own resolutions. One of my big ones is to develop this blog and really educate people who want to know about Tenn. I would love to be a support for other parents of special needs children, like others are and have been for me. We are going to jump right in this week starting with Tennyson’s birth story.

I also hope to advance my sewing and embroidery skills with the help of my new fancy shmancy Husqvarna Viking H Class embroidery and sewing machine. A Christmas present from The Husband (I love him!!!). Maybe a little shop on the internet? I’m still developing that one. Sewing is kind of like my own little therapy sessions. I was so excited I read the manual on the train ride to Savannah! Don't make fun of me, haha.

Do you have any resolutions?

Feel free to let me know if you have anything you are particularly interested in hearing about. I’ve seen some blogs do question and answer posts and they can be pretty funny/informative. So don’t be shy! E-mail me at tennsense@gmail.com or leave a comment! I really do read it all and I reply to it all.

Happy New Year! Hello 2012! Happy Birthday, Andrew!