Hurricane Natalie (0-9 Months)

In the beginning...

Just minutes old!

Natalie Rose Atherstone was born on Friday the 13th in November of 2009. She was only 20 hours old when my nightmares began. 20 hours. 20 (drug filled) stress free glorious hours to enjoy my beautiful baby girl before the holy hell of a hurricane began to blow. We've had a few moments of calm since then (she's 9 months old as I write this) where it was smooth sailing and happiness, but these periods are entirely too short and often set me up for a dreadful drop when the next storm begins to move in.

At 20 hours old and only 20 hours since I'd had major surgery (c-section) a pediatrician came into my room and told Nathan and I that she thought further testing was needed on Natalie. She suspected Downs Syndrome and questioned why I'd only had a blood test done and NOT an amniocentesis. She basically said that since I was so old (I had Natalie 2 weeks before I turned 35) I should have done every test possible. I told her that the AFP blood test had come back negative for Downs and that realistically at this point, it didn't really matter why I did or didn't do anything. The real question was, “What are we going to do NOW?” She ordered a chromosome test for Natalie and said, "It will take about 2 weeks to get the results. Try not to worry. Bye." Devastating doesn't even begin to describe the rabbit hole I fell down. I sobbed. Uncontrollably. Nathan just stared at me. I think this is when our communication skills began to crumble…

The rest of the hospital stay was spent worrying and having every nurse, doctor and anyone else remotely qualified take a look and give their opinion on Natalie's condition. I didn't see Downs in her features, but maybe I was too close and only seeing what I wanted to see. Everyone else looked at Natalie and said, "Absolutely not. That baby does not have Downs Syndrome." But the seed was already planted and I wasn't going to feel better until those test results were back.

Those 2 weeks were horrid and painful. The not knowing was (I thought at the time) the hardest thing I'd ever endured. Somewhere along the way Nathan got the idea that I wouldn't love Natalie if she did have Downs, I told him he was wrong. If anything I'd love her more. He didn't understand that every Mom has a "vision" for their child. You want them to grow up healthy, strong, and happy. You want to be a part of their lives as they grow up, find their passion, and fall in love. You picture them at all the stages of life running to you and needing hugs, kisses, guidance and love. All of a sudden that "vision" was gone and I was left trying to make sense of it all.

Downs didn't mean bad, it just meant different. And I was trying to figure out how different life was going to be for all of us and how I was still going to remain (somewhat) sane. 

Meanwhile, we met our pediatrician for the first time when she was 5 days old and he told us that she wasn't gaining enough weight to please him. I was breast feeding and he gave us a few more days, but stated that if she wasn't where she needed to be upon our return he'd recommend we change her to a formula only diet. He was also concerned with her length. She was too small for someone of her parent’s stature. (I am 5’9” and Nathan is 6’2”) He recommended us to a genetics counselor. Fear was really setting in now. I left feeling like a total failure. Could I do nothing right for this precious baby girl? I felt alone and scared. It seemed Nathan was putting distance between us and a strong undertow was pulling me under into the dark sea.

We returned back and in a few days and she'd gained enough weight to make him happy. He was impressed with her strength and her expressive personality. From the get go Natalie has had a very engaging way about her. She demands your attention without trying. She can light up a whole room just by being in it.

We met with the genetics counselor when Natalie was 21 days old and found out that her chromosome test had come back completely normal. Relief flooded over me and I thought I might do a little jig and then the one word no parent wants to hear after such good news was brought forth, “But.” How I have grown to loathe that one word. For me, it is the most dirty and vile word in the English language and rarely does it show up with anything nice to contribute to the party. But is the friend who brings beet salad to the potluck. (I apologize if you like beets, but (see there it is again) I think they taste like dirt.)

BUT… She is too small. She should be longer. Well, we can’t change how long she is, so what does that all mean? We need to wait. Are you kidding me?!? More waiting? Yup. She may have a growth hormone deficiency, she may have Dwarfism, she may be a midget, but come back in 6 months and we’ll see how she is growing and go from there. Now don’t get me wrong I LOVE our geneticist and her assistant. They are the two most helpful, concerned, and caring medical professionals I have met along this journey, but (oh bother) this was not helpful. Mind you our daughter isn’t even a month old when we are being told that we have to wait 6 months and see how it goes. Sigh.

I didn't tell very many people what was going on. It was too hard to speak the words out loud. I withdrew into a cozy pit of self loathing and despair. I did my best to put on a happy face and just love my little girl, but the whole time I knew that this was all somehow my fault. I had not had an easy pregnancy (puking every day was the norm, sometimes multiple times a day) and I knew that I had somehow, someway done something to cause all of my daughter's issues. I grew very isolated and lonely. I was only happy when I was with Natalie. She could always make me smile and bring me out from under the black clouds. When she wasn't with me I felt like a zombie. I managed to plaster a smile and say happy things when people were present, but when I was alone, I cried. A lot. 

Natalie is on the low end of the growth charts, but at least she is on them. She started out in the third percentile for length and weight and has finally (at 9 months) reached the fifth percentile. Woohoo! And yes these numbers are out of 100 percent. The worrying continues to this day, but I try to push it to the back of my mind… Try being the operative word.

She wore preemie sized clothing for the first few months of her life. She was still so tiny. We went to all our scheduled doctor appointments and had all our recommended vaccinations. We did our best to attempt some sort of normalcy and I tried not to stress out and worry, both of which I could get paid professionally for.

On 2/4/2010 I took Natalie to the doctor for a head cold that she'd had for weeks. She was just congested. That was her only symptom, but the poor girl couldn't breathe! The doctor seemed to think I was overreacting. To me breathing seemed like a fairly important aspect of life and she'd gone weeks without being able to do so out of her nose which made eating from a bottle very difficult. No matter how much I suctioned out her nose there was always  an instant refilling of mucus. They sent me home with a few pages of infants with colds and dismissed me. To this DAY she still suffers from congestion. When I bring it up as a possible factor in her condition, I am dismissed again. To me, anything that impedes oxygen reaching the brain seems vital in a young brain's development, but no medical professional seems to agree, so I do my best to keep her nose clear and she learned from a VERY young age how to breathe through her mouth. She's my smart little cookie.   

Four Months Old...

When Natalie turned 4 months old (3/13/2010) I stopped breast feeding and switched her to a strictly formula diet since I feared my lack of milk production may be the cause of her growth issue. This brought on the next hurricane…

Love this Blondie onsie. It still fits!

Within a few days of an all formula diet I had a totally different child on my hands. She was fussy, angry, and cried all the time. The polar opposite of my Natalie a few days prior. I thought it might be colic, but she was 4 months old and everyone said that she was too old for that to be the case. The only other thing it could be was the formula. I called to make a doctor’s appointment and was offered a phone appointment for that day, I took it. While she wailed in the background I explained what had happened and the pediatrician concluded she was allergic to milk based formula and to switch her to soy, immediately.

Thankfully, I had a free sample that had been mailed to me and I changed her food with her next feeding. A few days went by and all seemed well (we were in the eye of the storm) then without any warning, BAM! Colicky Natalie was back and she was in more pain and fussier then before. She was inconsolable. Nothing helped. Hours upon hours of screaming in pain and crying became our life. Getting her to sleep took an act of congress (and we all know how efficient our congress is) finally after a particularly gnarly 6 hour stint I’d had enough. I called the advice nurse and told her someone needed to see my baby. This was ridiculous. This was 4/8/2010.

After arguing with the nurse who spoke too softly and with such a thick accent (while my daughter screamed in agony on the background) it was hard to hear and understand her finally she asked if I’d prefer Dameron Hospital or Modesto Kaiser Hospital. Since Natalie was born in Modesto and aside from the one really horrible pediatrician who turned our lives inside out, we’d had good luck with everyone else we’d encountered. Modesto is only 10 minutes further away then Stockton's Dameron and so I went with what was familiar. Mom and I were in the truck and on our way with a very unhappy baby girl within minutes. Nathan had been in class that night, but left early to come meet us. The ride there Natalie drifted in and out of sleep. Thankfully.

It’d been weeks since she’d really eaten anything significant and we were coming up on one month of this battle. Doctors have told me it shouldn’t have had any affect on her growth and development, but really?!? One whole month of eating just enough to live, crying, being in pain, lack of sleep, and not being able to focus on playing and learning and growing… And it shouldn’t have ANY affect?? It just doesn’t add up to me. This is when I first started to notice she was falling behind in her growth goals. I know they are just guidelines and every child develops differently, but Natalie was falling behind significantly and began some odd behaviors. This was the first time I actually started to vocalize my thoughts and concerns with my Mom. At this point the divide between Nathan and I seemed to rival the Grand Canyon and talking to him about these things only seemed to make things worse. I retreated further into myself. I hated arguing with him.

When her mannerisms began to change Autism was one of the first things that came to my mind, but I knew it was WAY too early to come to any definitive conclusion. Autism can’t be successfully diagnosed until 16-24 months and she was only 5 months old, but I could NOT shake it. She began repetitive behaviors with her hands, she started to babble less, she stared at the ceiling fans for hours, she showed no change of expression when Nathan or I entered the room after being gone. She never reached out for us; she was indifferent to the people who loved her the most.

They sent us home from the hospital with yet another type of formula. The ER doctor decided that she wasn’t lactose intolerant and that such a radical change was what was throwing her body into these horrible stomach cramps. Formula number three has been a godsend and she is still on it today. Enfamil Gentlease with partially broken down proteins is just what her body needed, but nothing could take back the last month and the hell we’d all been through. I eventually came to terms with her setback and that we’d just have to work hard to catch her up. Around this time we started adding Gerber "real" foods to her diet in the hope it'd help her grow bigger and stronger. (She's now moved on to 2nd foods! Yay!)

Six Months old...

And then the next hurricane reared its head… At Natalie’s 6 month baby well check (5/18/2010) the doctor informed us that her growth was not acceptable. She was still too small and he was sending us back to genetics.

Grandma's Birthday and Natalie's 6 Month Birthday!

We met with genetics again just two days later. They decided to do some growth hormone tests to see if they might be the cause for her still being so small, and then... As always, more waiting.















Eight Months Old...

At Natalie's 8 month well check (7/27/2010) she completely fell off the growth chart. The pediatrician was visibly concerned and he prepared me for a diagnosis of Dwarfism. I made it out to the truck before I began to sob. I had already put Natalie into her car seat and had turned on some music to muffle my tears. Every time I turned around it was more bad news. Every doctor’s appointment lead to more tests, more misery, more worry. I felt so defeated. I felt like a failure. I felt like I was at the end of my rope. I felt like all I wanted to do was make her healthy and happy and go one month without some sort of drama surrounding her.

She rolls everywhere!

On 8/4/2010 we were back in the genetics lab. The doctor measured Natalie eight times and she found her to be back on the growth chart. Apparently the pediatrician and his medical assistant had measured her incorrectly. The geneticist went over her growth hormone tests with me and they all came back normal. Natalie was just going to be abnormally small for such large (I’m still not sure if I should take offense to that) parents. We should just love and nurture our beautiful little girl and appreciate every day with her. (Which we do!)


RELIEF. Thank whatever deity you pray to!! I couldn’t believe my ears. EIGHT MONTHS of hell and it all whittled down to she is just going to be small. At this point she is still in 0-3month clothing, but making the move into 3-6month and there isn’t a shoe out there that will fit her. A size zero is still so huge on her tiny little foot, but I didn’t care. I could live with this and then that horrid word returned when Nathan (who had to come to the appointment late due to work) entered the exam room… BUT…

But the geneticist had noticed some issues while we’d been in her office. The biggest concern being upon Nathan’s entrance into the room and Natalie didn’t react at all. She glanced up and acknowledged his presence, but there was no happiness or excitement that “Daddy was here” and this bothered the doctor. That paired with her noticing the Obsessive Compulsive Disorder (OCD) behaviors I had been noting lead her to ask, “Have you ever considered she might have Autism?”

Natalie has never reached out for us. She has never waved at us. She can’t clap her hands. She has already seemingly gone backwards in her vocabulary. From lots and lots of babbling to hardly any and dadada and mamama just disappeared, but I’m wondering if that is because she hasn’t felt well and has been fighting a cold lately. Natalie doesn’t seem to care what is gong on around her and doesn’t notice if I am gone for any length of time. When I do return from being gone for hours I get a glance and that is it, most of the time. She is totally disinterested in my return. She is very set in her ways and has a hard time adjusting to anything new or different. She can’t sleep if she isn’t in her crib, with her projector, and her toys. She has hand movements that she repeats over, and over, and over again especially when nervous. She “swims” on the floor when excited and just sort of flails about repeatedly or spins herself in circles. All Autistic tendencies.

Natalie also looks at you when you call her name (most of the time) and makes fairly good eye contact. She snuggles into you when you pick her up and at times she is so happy to see you that she actually giggles. (I experienced this recently on the return from my first night away from her.) She is happy and plays well with other kids. She doesn’t crawl, but does what we call “baby yoga” and it looks like she may go straight from sitting to walking. She is very smart and catches on quickly. All non-Autistic tendencies.  So what does it all mean?

After getting over the initial shock that geneticist saw the same things I had witnessed I whispered, “Yes, but I thought that it couldn’t be diagnosed until she is much older?” She said that that was true, but that huge strides were being made and that she wanted to do a more intricate chromosome test, send us to a physical therapist (to work on some of her development issues) and send us to a behavioral specialist. I could already see the storm clouds moving in. More tests, more doctors, more nightmares, no solutions and the worst thing, more waiting. I held it together until after the appointment when Nathan suggested grabbing lunch in the cafeteria in the medical center. I wasn’t hungry, but needed to sit down and absorb all of this information. I was sure that NOW I must be enduring the hardest thing in my life...

As we ate (Nathan ate, I picked at a muffin) I explained what Nathan had missed during the exam (he’d had to step out a few times due to so many people being stuffed into such a tiny room) and I started to cry. I felt lost. Downs, Dwarfism, now Autism?!?! What kind of sick joke was this?

Autism carried the same feeling that Downs brought. Not bad, just different and like Downs, Autism has such a wide spectrum, that there is really no way of determining how extensive the severity might be. From high functioning to total recluse we just won’t know until she is about 2-3 years old. My heart hurt, my stomach hurt, my head hurt and I felt like I wasn’t sure how much more I could take. "Constantly Waiting" should be tattooed on my forehead.

After our lunch Nathan headed back to work and I headed to the lab for yet another blood draw from my tiny Sweet Pea. She is such a trooper. She cries a little, but mostly she gives the phlebotomist dirty looks and seemingly plots her revenge on them. My mind still swirling we made it back to the truck and headed home. The test would take 2-3 weeks for results. Waiting had now moved up to #2 on my list of worst words ever.

The first chromosome test that had been done on Natalie (when she was just 20 hours old) was a simple microscope test where a technician looks at her chromosomes with the naked eye through a microscope for any visible abnormalities. This new test would be preformed by a computer with each chromosome being broken down into microscopic pieces. This would be much more in depth and would look at so much more then the first test. Let the waiting begin…

I set up the appointments with a physical therapist and the behavioral specialist and did my best to stay offline where there are tons of good, but also tons of bad information. I found a mother on a well known Autism website whose blog had just been posted. I was amazed at how similar our stories seemed. The blog could have been easily written by me. She has a daughter who was diagnosed early (11 months) and her ups and downs emotionally described me to a T. Boys are four times more likely to have Autism Spectrum Disorder (ASD) and I was having a hard time finding someone with a daughter to talk to and get advice from. This felt like fate. The world had heard my pleas and sent me this sign. I looked for her blog on google and found her facebook page. I sent her a note, terrified I was crossing some personal boundary and was overjoyed when she messaged me back and added me as a friend. I cried as I read her message and felt such relief that finally I had someone who understood the hell I was in. I still felt alone, but just not as isolated.

Nathan and mine’s communication skills had become very strained by this point. The stress of all these issues was taking a toll on us and I no longer felt like he and I were reading the same book, let alone being on the same page. It seeped into every part of our lives and the emotional separation had become difficult to accept. We just didn’t talk and when we did it seemed it lead to argument or one of us just giving up and shutting down.

The first stop was to the physical therapist. She saw us on my Dad’s birthday 8/12/2010 and it was an interesting visit. The therapist is very, um, “quirky” to say the least, but I don’t care about her personality I just want her to help my baby girl who at this point has been determined to be at least 2 months developmentally behind. She spent about 20 or so minutes with us and then sent me home with daily exercises to use to help Natalie catch up and get her “core” strengthened. We will be returning every other week until it appears she is much closer to where she should be physically. She stated that she saw no ASD tendencies, but she only spent 20 minutes with us, so… That didn’t make me feel a whole lot better.

She loves her horsey t-shirt!

On 8/16/2010 we found out that her chromosome tests all came back normal. Which was expected. Genetics are still is search of definite conclusive answers for ASD. The geneticist and her assistant had prepared me for this and I wasn’t surprised, just relieved and happy that it definitely wasn’t genetic so there is hope that behavioral therapy will work to redirect her brain.

Our next stop was the pediatric behavioral specialist. We found out that he works with an Autism foundation on his off time and has been specializing in ASD for over 10 years and has been a pediatric behavioral specialist for 25 plus years. He preformed multiple tests with Natalie and found that she was behind in some areas and on target in some. He assigned me some daily exercises to do with her to attempt to bring her development back on track. He said it is entirely too early to diagnose her with ASD. That the research he has read and been involved in has shown that a definite diagnosis can not come until 16-18 months. He stated that some children who showed these “Autistic Tendencies” early in life were followed and later found to have no symptoms whatsoever by 24 months and some did indeed end up with ASD. Basically at this point, we just don’t know. 

And that is where we are to date. We just don’t know. She has some tendencies that seem to be OCD/ASD, BUT she is too young to diagnosis. She is too small, BUT they think that it shouldn’t have any other affects on her. She is behind developmentally by about 2 months, BUT doctors seem to think we can help her catch up. She is a happy, beautiful baby, BUT these damn storms hover every day threatening to capsize our ship.

I have mourned the loss of the child I thought I’d have. I have mourned the loss of the Mother I thought I’d get to be. My heart has been ripped out and stomped on so many times that I fear it may become numb. I am slowly finding a way to deal with the every day ups and downs. I am finding strength in things like meditation, yoga, and mindfulness. I am reaching out to my friends and family for help when I need it. I am doing my best to enjoy every giggle and every smile and let go of the ever present chest crushing worries and fears. It is a daily, hourly, sometimes minutely battle that I do not always win. I am trying to stop blaming myself and focus on what I can do today to make her happy.

But. But. But. But I am stuck in a holding pattern. Waiting. Waiting. Waiting. Constantly waiting for the next wave to hit and the next hurricane to blow through. Frustrated. Frustrated. Frustrated. Frustrated that I haven’t had one full FRICKING 24 hour day since my child was born where I didn’t worry and fret about her future, her health and her well being. Angry. Angry. Angry. Angry that I was robbed. I was robbed of the joy and excitement a new baby should bring. I was robbed of the communication and contentment that my marriage used to be full of. I was robbed and I am not sure that any of it will ever be the same.

Nathan and I are seeking help to get our communication back on track. I am looking into Eastern Philosophy for direction in how to manage my mood and attitude. I am attempting to take care of me and find my happiness so that my family can benefit from it. I am trying to be a better daughter, wife, mother, friend and most importantly, a better Jakki.

So I wait. I carry our life jackets with us constantly, just in case a rain storm, tsunami, or hurricane should suddenly appear. I try to think positive. I try to keep Natalie out from underneath our microscopes where we dissect every little thing she does or doesn’t do. I try to look at the good in my life and be grateful for all I have. I have a happy daughter who has a radiance about her that can light up the room, and more importantly my heart. She is the best thing in my life and while this has been one hell of a 3 hour tour, I wouldn’t trade one second of it because it brought me Natalie. I will update this as we go and as I get the time. All I can say is… We are waiting and for now the waters are calm and still…

One of her Baby Yoga poses.

My Sweet Pea Diva!