Welcome AJ

On June 2nd 2011 a new little being was brought into this world. A beautiful 7lb 5 oz 19 1/2in long baby girl with so much hair, she could make a bald man cry.

The pregnancy was less than fun, and to be frank if this had been my first pregnancy, I am not sure there would have been a second. There were many scary moments – there is nothing like spending the 2nd month of pregnancy being told there was a 50/50 chance of the pregnancy being successful. Fortunately, the issue during that time resolved itself – but a new one in my last month of pregnancy reared it’s ugly head and had me frightened enough that I created a written will and special letters to my daughter(s) and husband – which thankfully I did not have to share.

The issues this pregnancy dealt me had me feeling very guilty though – guilty that each of them could be my fault. You see, I deal with chronic migraines. They are pretty much under control. When I have them (usually 1 episode a month that last 3-4 days) I take a medicine named Zomig. It helps relieve much of the pain. During my pregnancy though, they got out of control and I had to continue to take the medication after trying general OTC’s – which didn’t work.

As the pregnancy went on, and complications arose, I kept wondering if it was the medicine. However, I kept being encouraged that things should be fine, especially after early screenings for birth defects came up pretty clean. Both my doctor and husband thought I was being a bit neurotic and I would be told “think positively”.

So I breathed and hoped, and after getting through some last scary moments of my pregnancy Addison Joy (AJ) was born. Once we heard her cry both my husband and I cried. Although he told me I was being too much of a worry-wort during pregnancy, he was just as worried – so when we both saw her and heard her cry, counted her toes etc etc, we were so very relieved. We both could not wait to hold her. The nurses and drs checked her over and thought she looked great – no issues, no need for NICU, we had ourselves a beautiful military issued baby girl

After having spent 2 weeks previously in the hospital, and being able to have a typical birth, I went home the next day. I wanted to get back to my little girl at home and the rest of my family. I was apprehensive though. My oldest (at the time 3, she just turned 4 [Happy Birthday Abs]) is a rather exuberant child who has a very hard time playing by herself and not having someone by her side all day – that someone being me. I knew having a little one would be difficult, thankfully though my husband’s family was up to help us acclimate and get us onto some semblance of a routine.

I was able to bond with my newborn as they took my oldest out to play – I noticed right away something that looked like seizures – eyes rolling back, facial twitches – but nothing with the body. Which sent me back in my memory as to feeling tremors in my pregnant stomach. I even asked my OB if babies could have seizures in utero and if you would be able to feel them – but as I watched my daughter I also took note that she could be falling asleep – just with her eyes open like babies do at this age. I didn’t say anything because my family knew I was beating myself up through the whole pregnancy, and I didn’t want them to think I was still being a worry-wort.

During her second week of life, I kept noticing these “things”, mainly during early morning feeds. However once I started to notice a true pattern the beginning of the third week of her life, I called the dr with my concerns. Prior to calling him I did do what every loving (and neurotic) mother does – search google high and low for information – too much info – but there was one piece of gold that I found that allowed me to show the dr what i was seeing – it was this youtube.com video: .

This was the moment I knew I had a really great pediatrician – right away he got us into see the chief of neurology and his staff at the Tufts Children Hospital in Boston. They are an amazing group of doctors. We came in, I finally had my own video to share, and shared our story. They told us we would not be leaving the hospital without a plan. Originally we were there for an evaluation and EEG, but they added on a ultrasound as well. They wanted as much info as possible to help my little girl.

I wish I could leave this post and say – I was crazy and she is fine – just odd sleeping patterns. Unfortunately however, she had an abnormal EEG with hi-voltage patterns which indicate the likelihood of seizures. The ultrasound came back clean however – showing that there are no large abnormalities causing them. They have placed her on Keppra and tomorrow we go in for an MRI. The seizures are not under control yet though – just changing their presentation – but she had to be put on a rather low dose since her first dosage of the serum sedated her. So hopefully by the end of the week we will get them under control when we can raise the dosage – and also hopefully we will know from the MRI what her prognosis will be.

So now if you have not guessed it, the intent of this blog is to write about my daughters and my experience as a mother. I am sure many of the posts subsequent from this one will be focused on AJ and our experiences, especially for the next few months or so – as I hope to provide information that helps someone else, like the youtube video helped me. However, in addition to this, I will post about being a working mother, a mother who goes to school, childhood, milestones etc.


6 responses to “Welcome AJ

  • varun vyas

    it’s realy a great effort. hope Adission will get well soon

  • asenchik

    My husband knows your husband (I forget how at the moment) and he shared this post with me. I just wanted you to know that I’m praying for you and for your family…for complete healing for little AJ and for strength and endurance for you as you face this while trying to spin all the other plates in you have going in your life.

    -Shelley Micol

    • dnoller

      Thank you. I am grateful for your kind words- I need all the strength I can muster right now.

      (I believe our husbands know each other via programming in Python.)

  • Katie Cunningham

    I’m glad to see you started the blog — Trust me, it’ll give you some of your sanity back. You guys will be in my thoughts as you find your way through this.

    I think it’s every mother’s first instinct to blame themselves when there’s something wrong with their child, but down that way lies madness. It takes a while, but eventually you learn to stop blaming yourself.

    • dnoller

      I agree with you Katie, I am trying hard not to go down that path, but for every seizure that I see the first thought I have to fight off is “what did I do?”..

      Thank you for your caring words and also thank you for the encouragement on blogging I am sure over time it will help.

  • Nella

    Hi, a friend of mine sent me your link. I have a 15 month old who started her seizures when she was 9 days old. Your daughter is beautiful. If you need someone to talk to you can contact me. -Nella Sansguiri (I think my email should pop up)

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