Our Christmas Miracle

Two months ago, we were going through a very scary time. We were in the hospital with our youngest daughter, Sadie, who had just been diagnosed with a very rare and catastrophic type of epilepsy called Infantile Spasms. We had a lot of scary unknowns- if and when her development would be affected in any way, how long her seizures would take to respond to  treatment, and what kind of side effects the medications she was taking would have on her little body. It’s hard to describe the wave of emotions you go through as a parent when your child is diagnosed with something that could cause lifelong consequences. I went through periods of denial and sadness, but also periods of acceptance and perseverance. She needed me, and I had to let go of fear and anxiety and hold on tightly to faith and find a strength inside of me I didn’t know I had.

Her expression 99% of the time

A lot of people have come up to me asking if Sadie could just grow out of this. Some have told me that they too had seizures when they were little, and they went away as they got older and now live a perfectly normal life. Infantile Spasms (IS) is a little different. If left uncontrolled, development is largely affected and can be significantly delayed. Some of these babies regress back to a newborn state and have a difficult time catching up. In multiple studies done in babies with IS, overall intellectual and neurodevelopmental outcome is poor. Sadie’s prognosis seemed grim at first. Some babies end up doing 100% okay with absolutely no delay in development. Unfortunately, this happens in only about 10-20% of cases. The spectrum is wide, going from mild mental retardation to severe developmental delay with severe epilepsy. It was very difficult to hold my seemingly normal, healthy baby and think that her little brain could have already been impacted with so much damage.

Now, two months later, we have a little more insight on IS and what Sadie’s prognosis might be. Typically, development is less likely to be severely impacted if there is no found cause for her IS. Fortunately, no cause has been found yet for Sadie. Her MRI was clear along with all the blood work that was done. We are still waiting to hear back from genetics, but her neurologist seems to think that it will come back clear as well.

I’m a science nerd, and have been reading whatever literature I can find to educate myself more on Sadie’s condition. Not many studies have been done on babies with this type of epilepsy, but I was able to find the main factors that can lead to a more favorable developmental outcome. They are:

  • cryptogenic cause (no known cause)
  • Age of onset of spasms greater than 4 months old
  • No partial seizures accompanying the spasms
  • early onset of treatment
  • early and good response to treatment

What I found above didn’t make me feel any worse about how she would do long-term, but it didn’t make me feel any better either. So far she seems to be in the cryptogenic group. We also started treatment very early and aggressively, and she responded fairly early (within 2 weeks) and the spasms have been controlled so far on the medication she is taking. However, she was very young when her spasms started-  only 11 weeks old when we received the diagnosis, and I’m guessing she was having these spasms for at least 3 weeks if not more before I took her to the ER. She was still so little, I thought the seizures she was having were normal, involuntary newborn reflexes! She also had partial seizures with the spasms. It can be easy to focus on the negative, but I’m clinging to the hope that because we got her diagnosed early, before we even started noticing a delay in her development, she will be in the small percentage who develop normally with no return of epileptic spasms.

So far, this baby has been nothing short of a miracle. We left the hospital feeling very discouraged. She was still having multiple, long spasm episodes every day. We would increase her medicine, and she wouldn’t respond. Her follow up EEG was still abnormal after being on medication for two weeks. I felt as if we would get one blow after the other. But Sadie wasn’t discouraged. She wasn’t going to let epilepsy get in her way of crushing milestone after milestone, and she certainly wasn’t going to let it break her spirit.

As soon as we got home from the hospital, she rolled over for the first time. I couldn’t believe it, she was still having multiple spasm episodes per day and yet her development stayed 100% on track. We were told this would not happen. Her personality didn’t change, it got better. She is the happiest baby with the sweetest temperament. She’s taught me so much in her short life, and her strength amazes me every day. I know she doesn’t know any different, but she has every right to be mad with all that she’s been through! She’s faced all of this with a brave smile, and I’m learning through her that no matter what life throws at you, positivity and perseverance will get you through it. Negativity and worry only make things worse.

How is our little miracle baby doing now? Amazing. After two weeks of being on her medication and having long, multiple seizures and spasms every day, they finally stopped. For good. She’s meeting her milestones. She’s fully engaged with us, loves to babble, is fascinated with her big sister (and tries to keep up- so much that she was even attempting to crawl toward her the other day!!), has a strong tone and great head control, and flashes us big gummy grins nonstop. I’m most thankful for the smiles and giggles, some babies regress so much with IS that the smiles stop. With her bubbly personality, I think that would be the hardest for me.

Grabbing those tootsies!! Little milestones like this bring us so much joy.

Last week we had a follow up EEG. For the first time, it’s CLEAR. Those chaotic brain patterns have returned to normal. Ecstatic doesn’t even begin to describe the feeling I had when her neurologist read me the results! Her entire medical team was so happy that day, they were grinning from ear to ear. Sadie rocked her physical exam, gave them full eye contact and acted exactly how a four month baby should. They don’t see this often. It was an early Christmas present for all of us.

Normal EEG!!!

Credit could be given to science and pharmaceuticals. She’s taking medicine, and it’s doing it’s job. Credit could be given to Nick and I- her parents. We caught it early, considered it an emergency and took her in right away to get a video EEG and confirm her diagnosis, which led to early treatment. But I give full credit to God. Specific prayers were given, and specific prayers were answered. Not all babies respond as well to treatment as Sadie has. Most babies (>90%) have obvious developmental delay, most before the spasms even start. Even with her seizures worsening, she was still progressing. She was covered in prayer by so many people, and I’m so grateful. Things should be much worse, and I was fully prepared for that. So this….this is a miracle.

I’m thankful for so much this holiday season. I’m thankful for our sweet and faithful friends and family, and even for people we’ve never even met, who have been so faithful in lifting our baby girl up in prayer daily. I’m thankful for moms who also have children with epilepsy and have reached out to show me support. I’m thankful for the broken relationships that have been mended out of this. I’m thankful for a supportive husband, who agreed to let me stay at home full-time with the girls- just one week before all of this started. I couldn’t imagine balancing this and work right now. I’m thankful for my precious first born daughter, who is so loving and caring toward her little sister. She has proudly taken on the role of her protector and I’m am blown away with how affectionate she is with her. If Sadie has any problems down the road, I know Carli will be right there beside her, helping her in any way she can.

Obsessed with each other

There are still a lot of scary unknowns. Sadie isn’t in the clear yet. In two months, if we get another clear EEG, we will start to wean her off her medication. This is really scary to think about, because she could very well relapse. Then we start this process all over. We still don’t know how these little seizures could affect her brain long term. There’s still a great possibility that she could have a learning disability or other neurodevelopmental delays down the road. That’s not something we can focus on right now though. We are just taking one day at a time, and enjoying our precious baby girl as much as we can.

My last post I shared a video of Sadie having one of her spasm episodes. Here she is now….happy, healthy, and seizure-free!!!

 

 

 

 

Pregnancy Blues

I’m officially three weeks postpartum and am adjusting to being a mama of two. I love the newborn stage- the constant snuggles, their smell, their tiny fingers and toes, those little reflexes, their sweet innocence. And of course the best part…they can’t talk back! If kids stayed babies forever I don’t think I would be able to stop having them! Although some days certainly have been tough (as expected), I am loving it. And even though miss those tiny little kicks and hiccups in my belly, it’s nice to be able to snuggle little Sadie on the outside now.

My pregnancy with Sadie was much different than Carli’s, and somewhat difficult. I had the picture-perfect textbook pregnancy with my first. I exercised regularly, ate almost perfectly, gained the appropriate amount of weight, was extremely happy and excited, became emotional only over the expected stuff (Publix commercials and Mother’s Day ads), and nested the entire nine months. I couldn’t wait to be a mom.

I expected things to go about the same with this pregnancy- I loved being pregnant the first time and didn’t expect to feel any differently with my second. My first trimester was about the same, only leaving me slightly more nauseous. Early in my second trimester we found out we were having another girl- exactly what I wanted. I was ecstatic, and my motivation built to get the girls’ rooms ready, wash and sort out Carli’s baby clothes that had been put away, and start organizing the house to make room for another baby. I couldn’t believe that I was getting exactly what I  had always dreamed about since I was a little girl- raising sisters! It all seemed so surreal.

When I was about 20 weeks pregnant things changed. I can’t really pinpoint what happened, or if there was a certain event that caused it, but my mood instantly shifted. I no longer felt like I was in control of my emotions. I was constantly crying for no reason and lost my motivation to do anything. I became increasingly negative, my appetite became poor, and most days it was hard to function. Even something as simple as making a grocery list seemed daunting. I lashed out and distanced myself from my husband, became a lot quieter around friends, and just went through the motions when I was taking care of Carli. A lot of the time I would sit her in front of a movie so she wouldn’t notice when I went upstairs to cry. In some ways I felt helpless- and also very angry. It terrifies me to not be in control. I didn’t understand why I couldn’t just snap out of it. I didn’t know what was wrong with me- my usual personality had done a complete 180, and I  had no idea how to feel like myself again.

People started to notice, and I brushed it off,  blaming it on lack of sleep. It’s easy for me to be vulnerable about things that have happened in the past, but it’s extremely hard for me to be transparent about things I’m currently going through. I don’t like being a burden to people, and most of the time I’ll brush things off thinking it’s no big deal. There are people out there dealing with much worse! I felt selfish and angry with myself. Here I was, carrying a perfectly healthy baby girl with another beautiful and healthy toddler at home, and yet I felt completely torn apart inside. What was wrong with me??

At my 28 week prenatal visit my doctor’s office gave me a depression screen to fill out- normal protocol at that stage in the pregnancy. I remember answering the questions honestly and it giving me a pretty big wake up call. My doctor is amazing, and we had a pretty in-depth discussion about how I had been feeling. I remember telling her that I thought I may have postpartum depression- but I wasn’t postpartum! I had no idea that it can be common to have depression symptoms during pregnancy as well- these mothers being more at risk for postpartum depression. Pregnancy hormones can do some crazy things!

I had never understood how a mother could even go through something like postpartum depression. To me, pregnancy and childbirth were so romanticized, something absolutely wonderful. What in the world could cause a mother to be depressed after going through something so incredibly amazing- giving birth to a sweet baby? It never made sense to me, until now. It’s not something they could necessarily control. They weren’t bad moms for feeling that way either.

It’s hard for me to ask for help. But I was fully aware that if I didn’t I wasn’t only hurting myself, I was hurting my kids. And my poor husband! My doctor and I both decided that I wasn’t high enough risk to need any sort of medication, but I did agree to see a therapist who specializes in working with pregnant women. And honestly, it felt so great to be able to talk to a complete stranger about every little thing. I could fully unload everything I had on my mind to someone who didn’t know or judge me. She helped me to change my line of thinking to thoughts that were more realistic and grace-filled. She taught me how to deal with some of the emotions I  didn’t know what to do with.

Beach therapy

Along with getting professional help, I can’t be thankful enough for the support of my friends. They reached out to me, offered to help in any way they could, and most importantly they prayed for me. The minute I  finally opened up about how I was feeling to some of my friends, I felt as if a burden had been lifted. I no longer felt lonely, I felt support.

By the middle of my third trimester, I was already starting to feel more like myself again. And now, three weeks postpartum, I feel better than I have in months. I’m sure my husband would tell you I’m still slightly nuts- but I think it’s much closer to a level of normal for just having a baby a few weeks ago! I’m not sure where my emotional state would be right now if I hadn’t reached out for help. I don’t feel any signs of postpartum depression right now, and I’m keeping myself very aware of how I’m feeling mentally. I think it’s normal to feel a bit overwhelmed and stressed in this stage of life, but it’s not to the point where it is debilitating. If it gets to that point, I may need to reach out for help again. And I’ve accepted that it’s okay- I need to take care of myself first so I can be the best possible mom for my kids.

To keep myself grounded, I’m trying harder than ever to lower my expectations for myself and my family. More grace, more laughter, more messes, and a greater appreciation of the place I am in my life right now. Understanding that it’s not always going to be easy, and to accept that. To laugh at myself more and be kinder to myself. To ask for help when I need it, and accept that I can’t control everything.

So to anyone who was in my line of fire the past few months- I’m sorry. Thank you to everyone (especially my husband and Carli) who gave me unending grace. If you prayed for me, I felt it. If you fed me, if you offered to help in any way, if you just texted asking me how I was doing- you have no idea the impact that had on me.  From the bottom of my heart, thank you.

 

Facebook vs. Real Life

Taking a perfect photo of kids is tough. Rarely do I get a perfect picture that is social media post-worthy unless I try a hundred times. There’s bribing, making silly faces, jumping up and down like a fool trying to get them to laugh- it can be exhausting at times! However, the results can be hilarious. Reality is refreshing, and so much better than those perfect pictures sometimes. I’m very guilty of posting the most precious pictures on social media, but I also love it when someone posts an unfiltered  picture of their kid. I love seeing kids being kids- because they certainly aren’t perfect! And it makes my crazy life seem a little more normal.

Because I never delete pictures, and because I secretly love those imperfect pictures the best, here is a refreshing dose of picture taking reality (or Facebook vs Real Life, as I like to call it).

I am NOT happy you made me do this

 

The split second she stopped crying, I got a picture as soon as I could (because OF COURSE I had to document her first race on social media!

 

Not impressed with this daddy-daughter date that’s about to go down

 

Did you say dessert? Okay, I’ll give you a half-smile

 

We don’t care if you put us in matching shirts, we’re tired and hungry and aren’t posing for you right now

 

Did you say chicken nuggets? Will a fake smile do?

 

Seriously mom?? Can you at least dress me first before we take this sentimental photo of me looking at my newborn clothes?

 

I’ll only pretend like I care that these clothes are being passed down to my sister if you give me a paci first (filter added for the nostalgic effect of course).

 

I’m hot and I just want to eat the candy that’s in my Easter eggs- so get the phone out of my face please

 

Sometimes we can get her to take a sweet-looking picture with me. She was feeling generous this day- and we had Easter eggs to bribe her with #winning

 

Hey girls- hug and show me how much you love each other!

 

…..a thousand takes later

 

Can we please just GO??

 

After several attempts of two women doing everything we can out of desperation to get 3 kids to smile…not too bad!

 

That’s fine mom- you try and get your selfie in front of the castle at Magic Kingdom, I’ll sit here and pick my nose

Yup, still not feeling the selfie in front of this castle ya’ll

 

We decided on an angle that wouldn’t make it so obvious that she had NO interest in getting this very important picture

And sometimes, no matter how hard you try, that perfect picture just never comes.

It’s my party and I’ll cry if I want to! Plus I’m sick, so if you think you’re going to get a good picture of me on my birthday, you’re crazy.

 

Nope. Not today.

 

We tried so hard to get a good Thanksgiving photo this year…

…apparently we didn’t try hard enough

 

I tried so hard this Memorial Day to get a good picture of Carli and her friends. This picture, taken by a random guy at the parade, turned out to be my favorite. Not because my child is obviously having a meltdown due to the heat and lack of a nap, but because this is something I know I’ll look back on and be able to laugh about. Parenting for real.

And other times, you get the perfect photo without even having to try…

Completely captivated. Maybe if I dress up as a princess every time I take a picture she’ll cooperate for me?