Sadie’s Story- One last update

Exactly one year ago today, October 30 2017, I watched Sadie have her final (and hopefully forever last) seizure. I remember it so clearly too. We had just returned home from her first visit to meet her neurologist at the Infantile Spasms clinic in Atlanta. We hadn’t received the best news. Her EEG was still abnormal and there was some concern that she was continuing to have multiple spasm clusters per day, even after being on medication for over two weeks. Infantile Spasms are seizures that need to be controlled as soon as possible- otherwise neurological impairment is much more likely. I remember that drive home, feeling not defeated, but ready to fight. I didn’t have time to worry about her future or to feel sorry for our situation. All I could think about was getting her better. I could only be in the present, because the future was too scary to think about.

Sadie’s first night in the hospital

That evening we had gotten our oldest to bed and were sitting downstairs on the couch. Sadie was sleeping in the rock ‘n play beside us. She woke up, and I waited for her seizures to start. They always happened upon waking. Sure enough, she had a focal seizure then her spasms started. I looked at the clock, praying this would be a shorter cluster than usual. All I wanted was some good news to tell her nurse the next day. It was ten minutes long. Not good news, but I prayed again, pleading to God that tomorrow would be different.

The next day was Halloween. We made it through 24 hours with no seizures. Then it was a full week. Then a month. Then six months. The miracle we had been waiting for had happened.

 

What’s incredible is that now, watching Sadie, I sometimes forget everything that she’s been through. She’s a completely normal, happy 15 month old. As far as development goes she’s blown her motor skills out of the water! She was crawling at 8 months, taking steps by 10 months and walking at 11 months. She’s completely fearless when it comes to trying new things. By a year old, she was climbing to the top of the playground at every park we would go to and find the most challenging slide to go down. She refuses my help, she wants to do it all on her own. If you had told me she would be doing the things she is now a year ago, I wouldn’t have believed it. I remember sitting in the hospital, holding her all wrapped up in her tiny hospital gown, gauze all over her head with wires coming out, and the neurologist telling us exactly what we had feared…..

…….the side of the brain the seizures are affecting isn’t good

…….she’s not responding to treatment as quickly as we liked

……..normal development is highly unlikely with these babies

…….most babies with infantile spasms have moderate to severe neurological impairment

……..other seizure disorders can manifest, including Lenox Gataut Syndrome

At one point I stopped listening, I just couldn’t process any more. I spent hours on Facebook support groups, desperately trying to find success stories. There were a few. Most left me feeling discouraged. By our second day in the hospital I had stopped crying and had accepted the fact that I would be raising a special needs child. And I mentally started preparing myself for that. I hated the feeling that I was losing her, but I had to be strong for her. Even thinking about it now makes me emotional. I wouldn’t wish a sick child on any mother.

One of the many EEG’s Sadie had to do last year

My last blog post on Sadie was the end of 2017. A lot has happened since then. Her spasms stopped for good on October 30, 2017. Since then her focal seizures also stopped. There were a few instances around February and March of this year that we think she may have had a couple absence seizures. This was only through clinical observation (myself and my mom and husband), but they were never picked up on an EEG. Her case manager thinks they may have been absence seizures from what I described, but her neurologist dismissed it. So we keep the anniversary of her last seizure being on October 3o.

Sadie took her last dose of Sabril on March 22, 2018. I remember being so happy, yet terrified at the same time. Sadie HATED taking that medication, so much that I had to force it down her throat. Once we stopped, our morning routine became much more pleasant. I was so scared the seizures would come back and be even worse than they were before. Thankfully we were able to fully wean and her EEGs continued to show normal brain activity. Such a praise!!!

 

This summer we moved from our home in Georgia to Indianapolis, IN. We made the decision after Sadie was discharged from the hospital last fall that it would be better to be closer to family. We weren’t sure what Sadie’s future would hold, and wanted all the support we could get. We did our research, and found that Cincinnati Children’s hospital was ranked #3 nationally in neurology. Even though we weren’t displeased with Children’s Healthcare of Atlanta, we wanted her to have access to the best medical care possible. Cincinnati is only two hours from Indianapolis, and Indy was a location that Nick could easily transfer to as an en route air traffic controller.

It was tough leaving such an amazing community in Georgia. People there felt like family, especially with all the support we received while Sadie was in the hospital, and the days after as well. As hard as it was to leave, we know we made the right decision. We couldn’t be happier where we are right now! God has blessed us so much, surrounding us with amazing new friends and community, and reconnecting us with old friendships. I was nervous about the adjustment, but it’s been easier than I expected.

 

Sadie has had one appointment with her new neurologist in Cincinnati, and we were very impressed with her. She gave us insight we never had before. After numerous tests, blood draws, x-rays and an MRI, we have never been able to find the cause of Sadie’s infantile spasms and seizures. This was hard to accept, I wanted to know exactly why my daughter went through all that she did. And if there was something that could have been done to prevent it. I’ve been through some dark moments, blaming myself for possibly doing something wrong during my pregnancy with her. I had to put the blame somewhere, it was easiest to blame myself. Her neurologist mentioned that her seizures could have been caused by focal cortical dyplasia- an abnormality in the brain that can cause seizures and also infantile spasms. She said it’s an easy fix if she were to have it- “just an easy brain surgery.” That’s literally how she worded it. I’m not sure I would call any brain surgery “easy” but it did make me feel at ease that this wouldn’t be a serious issue. She told us it would be picked up on an MRI, just not the one Sadie had done a year ago because she was only 11 weeks old.  At this point, Sadie’s care plan stays the same. No medication. No more EEGs. Live a normal life. Unless she starts having seizures again- then she would consider doing an MRI again to see if cortical dysplasia really is the cause. Right now, we just hope and pray that she stays healthy!

The only concern we have right now with Sadie is her speech. At 15 months, she isn’t saying any words. She says “mama” but it’s more a sound (mamamama) than a word. She knows I’m mama, but also refers to other things as mamamama. Her seizures did affect the side of her brain that controls speech and comprehension, so we are starting to get a little worried that she may have some delay in that area. We are watching it and don’t want to get too upset about it just yet since she’s still so young. She was an early mover, maybe she’ll just be a late talker! It’s something we are watching, and if we have to get her involved in speech therapy to get her the help she needs, then we are more than ready to do that for her.

Other than that, I’m just chasing around an extremely busy toddler whose world is about to be rocked in a few months. We got the surprise of our lives this summer when we found out we were expecting our third little girl! I’ve had a lot of fear this pregnancy, but thankfully Nick and I have had genetic testing done and everything came back normal. This puts my mind at ease a little bit. As a mom it’s hard to not worry about your kids, and I know I’ve developed some additional anxiety after all we went through last year. When I took Sadie to the ER, completely convinced that I was overreacting only for it to be confirmed that I wasn’t- it definitely changed my perspective on a lot. My kids are not immune to everything, and we certainly aren’t invincible. Still, there’s a fine line between worrying too much and being too laid back. For instance, thinking about Sadie possibly developing seizures again terrifies me. Especially now that she’s mobile. What if she has one at the top of a playground, falls, and hits her head? I can’t not let her explore and learn how to be independent, so I can’t let that fear control me. Finding the balance can be tough, but I would drive my kids crazy otherwise!

I’ve shared Sadie’s story with so many moms who were in my position last year. Scared, in the hospital with their tiny baby, and so unsure of what the future will bring. I’m thankful that I can provide them encouragement and support during such a hard time. I still can’t believe the place that we’re at with Sadie- she truly is a miracle. To everyone who prayed so hard for her, who were there for us during that time, and was her cheerleader through it all- thank you so much!

The bottom two videos were taken exactly a year apart. The first is of Sadie having a cluster of spasms, at this point I had no idea it was a seizure activity. The second is of her today- healthy and seizure-free.

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!!!

 

 

 

 

Sadie’s Story

Two weeks ago today, life was completely normal. I had two beautiful, seemingly healthy little girls, stressed out only over little things like keeping the house clean, and had just made the decision to quit my part-time job to be at home full time with my babies. Even though I  had a three year old and a newborn, life wasn’t as hard as I thought it was going to be.

Sadie was proving herself to be the perfect baby. She’s a great sleeper, only fusses when she really needs something, gives out smiles constantly, is extremely laid back, and just has the sweetest little personality. All babies are sweet, but there’s just something special about her.  If all babies were as easy as she is, I wouldn’t be able to stop having them!

pure sugar

A few weeks ago I started to notice that Sadie had a really exaggerated startle reflex. At times, she would do it over and over again, even if there was nothing around to give her a reason to. Her eyes would get really wide when her arms went out, almost like she was scared of something. Carli never did anything like that, but I just figured Sadie was really sensitive. Babies have such an underdeveloped nervous system anyways and make weird movements all the time. I didn’t think anything of it.

My mom visited a couple weeks ago, and she also noticed Sadie making these movements. She also thought she was just doing the startle reflex all newborns do, but thought it was odd that she would do it numerous times before she stopped. Again, we just blamed it on an underdeveloped nervous system and normal reflexes.

Not long after my mom left I noticed that before Sadie started these weird jerky reflexes, she would squint her eyes, then would go cross-eyed for a few seconds before being able to re-open them. New babies have a hard time focusing, but it struck me as odd. I asked a group of girlfriends about all these weird things she was doing, telling them it was as if she was having little seizures. I didn’t actually think they were seizures, but it was the only word I could think of to describe it. A friend of mine (who is a nurse) told me that a seizure wouldn’t stop if I pick her up. I thought surely she would stop flailing her arms if I picked her up, so I tried the next day when she started doing it after waking from a nap. I held her tight and her arms wouldn’t stop making those movements. That’s when I knew something was wrong.

So I did what all worried moms do. I googled. Somehow my google search led me to a condition called “Infantile Spasms.” The more I read, the more I was trying to convince myself that she didn’t have it. There was no way my baby could have something this horribly wrong with her. It’s a rare type of seizure disorder, found only in infants, that causes significant brain damage. Most babies who have this (90%) go on to have severe developmental and cognitive delays. More than 50% of babies with Infantile Spasms will suffer from some other sort of epilepsy later in life.

After I found this scary diagnosis, I do what I always do when I’m worried one of my kids has something horribly wrong with them. Look for a reason she wouldn’t have this- so I kept googling. The description of the spasms didn’t sound like the movements she made. However, when I found YouTube videos of babies with infantile spasms, my heart sank. Their movements were almost identical to Sadie’s.

I showed Nick, and he agreed that our daughter could most definitely have this. I made an appointment with her pediatrician the next day, who set us up with an EEG and referred us to a neurologist. Unfortunately, as with most specialists, we weren’t able to get her seen by a pediatric neurologist for another 3 weeks. Our pediatrician thought the movements might be caused by silent reflux, and prescribed Zantec. I was hopeful she was right, but my gut just told me differently.

24 hours after our pediatrician appointment, Sadie had several more episodes. I didn’t feel like we could wait three more weeks for answers, so I took her to the emergency room at Children’s Healthcare of Atlanta. My husband and I both decided it was worth the $100 copay just to give us a peace of mind that nothing was horribly wrong with her. As soon as the ER physician saw a video that I took of Sadie having one of her episodes, he brought a neurology team in to look at her. Within an hour she was admitted and hooked up to an EEG.

That whole evening was a blur. I hadn’t prepared myself at all to be admitted, and I definitely hadn’t prepared myself for the worried looks on the doctors faces and the sense of urgency they had. I had fully expected to be sent home, feeling silly that I drove my baby to an emergency room an hour away just to be told she has really bad reflux. I called Nick, and he left work to come be with us at the hospital. His parents just so happened to be in town that weekend, so Carli was taken care of. My good friend Holli brought me clothes, my toothbrush and a few other things at home to get me through the night. I remember sitting in the hospital room with her, eating Chickfila and trying to talk  about anything but what was actually happening. I had no idea what the tests that were being run on Sadie would find, and I didn’t want to even think about it.

I got about 30 minutes of sleep that night. Sadie had several seizures, and my heart was breaking every time. It was so hard to see her, lying in a hospital bed with electrodes glued to her head and wires connecting her to a machine. I wanted to be able to make everything better, just like I do with my older daughter. Clean it, kiss it, and put a band-aid on it. But this was a boo boo I couldn’t fix.

The next morning she had an MRI, and that moment was one of the hardest moments to get through. The doctor warned me that I may not want to be with her while she was being sedated because it can be a pretty big shock. There was no way I was going to let her be sedated without me in there with her. Right before the doctor injected the propofol into her IV, she started getting fussy- poor thing was so hungry! It had been almost 10 hours since she was last able to eat. Within a matter of seconds of the getting the propofol, she immediately stopped fussing and became pale and completely limp. It broke me to see her that way. As I watched her tiny little body be placed into the big MRI machine I wanted so bad to take her away from that room and just run as fast as I could with her out of the hospital.

I called my mom as soon as I got back to our little waiting room. I remember crying so hard I could barely speak. I didn’t want them to find anything on the MRI, but at the same time I was slightly hopeful they would. I had gone through different diagnoses in my head, and a part of me hoped it was an easily treatable brain tumor. Anything involving the brain is scary, and that seemed like the best option out of everything else.

After several more tests were taken, including an x-ray, we were finally able to speak with the neurologist about her diagnosis. He showed us the EEG and confirmed what I was fearing the most- Sadie had an extremely rare and catastrophic form of epilepsy- infantile spasms (West’s Syndrome). Her brain was a mess of high voltage chaotic patterns. Patterns which prevent progression and cause regression. Patterns that would cause irreversible brain damage. At first I felt relief in knowing that we finally had answers. Then I felt as if I’d been kicked in the stomach. The neurologist was very blunt with us and did not sugarcoat her diagnosis. I felt as if I was losing my beautiful, perfect baby girl. What did this mean for her? I never pictured her not having a life like her sister.  I never imagined raising a kid with special needs. It was so much to take in. I kept probing the doctor, trying to get him to say that our case was different. Sadie would beat the odds and be okay. He didn’t. He couldn’t.

With infantile spasms, you treat it very aggressively. Each day having spasms is a day lost. We chose the medication Vigabatrin (Sabril) because Sadie was also having partial seizures before her spasm episodes and this type of medication would treat both the seizures and the spasms. We were warned that this medication could cause irreversible vision damage, but that seemed like a better option than irreversible brain damage. Sadie didn’t respond right away to the medication, and it was very discouraging. She would start the day off well, then have several episodes in the afternoon. Some days she would have long episodes (the longest being 16 minutes long) and some days her episodes would only last 2-3 minutes. It seemed that we would take two steps forward, then one step back. We were finally discharged six days after she was admitted, and she still wasn’t responding to the medication like we wanted her to. But everything that was being done for her at the hospital we could do for her at home. We were still slowly increasing her dose every three days, so we were hopeful that we just hadn’t reached her therapeutic dose yet.

Now we have been home for 4 days, and Sadie is doing much better. We have finally seen a huge improvement and she seems to be responding to the Sabril. We are also extremely hopeful that Sadie will be okay once we maintain full control of these little seizures. We haven’t seen any regression in her development (a really good sign) and she is continuing to meet her milestones. She actually rolled over this weekend! That’s a milestone she really isn’t expected to hit until another month from now. She’s her same sweet self, fully engaged when we talk to her and gives us nonstop gummy smiles. Gosh she’s just amazing. I’ve been blown away by what a little fighter she is. I know God gave her the personality and the strength to be able to handle whatever this condition throws at her.

Looking back at everything, we’ve been able to see God’s hand in all of this. We didn’t have to worry once about Carli- Nick’s parents happened to be here when Sadie was admitted, and my mom was able to be here to take over once we knew we would be staying awhile. We are in the best place we can be for this kind of diagnosis. Scottish Rite Children’s Hospital receives babies with Infantile Spasms weekly- so I felt that she had the best care she could get. There is even a clinic in Atlanta that specifically treats and follows kids with infantile spasms- which is crazy to me because this condition is so rare. We will be making the drive up there regularly now, but I feel blessed that our drive is only an hour away to get such dedicated care. The support we’ve had since this happened has been overwhelming. So many of our great friends came up to see us, bring us groceries, clothes from home, and anything else we needed. Just having them in that little hospital room with us was helpful and made us feel less alone. Three of my good friends visited right after we received her diagnosis- having them with me helped to numb the sting a little bit. Our pastor happened to be in the room with us when Sadie had to have a Vitamin B6 test done. During this test she had Vitamin B6 injected into her veins- and it burns! She was screaming and so uncomfortable- it was pretty traumatic. Just having the extra support in the room provided a sense of peace.

We don’t know how Sadie’s story is going to be written, this is something that is fully out of our control. That’s hard as a parent- I just want everything to be okay for her. I don’t want her to ever struggle. I don’t want kids to make fun of her if she has disabilities. I know that whatever God’s plan is for her life, it’s beautiful. No matter how this impacts her, I know she’ll bring joy wherever she goes. She’ll handle any challenges life throws at her with dignity and grace. She’ll be perfect no matter what.

Life isn’t perfect, and it certainly isn’t easy. Trials like this can break us, or they can make us stronger, better people in the end. I’m at peace knowing that God’s plan always wins in the end. I’m already seeing that at work. I’m holding onto these verses that happened to be a part of my devotions the week I was in the hospital with Sadie:

For I consider that the sufferings of this present time are not worth comparing with the glory that is going to be revealed to us. -Romans 8:18

We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. – 2 corinthians 4:8-9

And lastly, here is a video of Sadie having one of her episodes. This is what we showed the doctor in the emergency room, and is a classic clinical sign of infantile spasms. This usually goes misdiagnosed for months as colic or reflux because most pediatricians never see it in their practice. Only 1200 babies get diagnosed each year! Because we caught it so early, we are hoping there will be very little impact to her development.
My advice to other mothers? Always trust your gut when you think something may be wrong with your child. And google isn’t always bad! It’s what I found on google that scared me, and encouraged me to bring her in to get checked out. I’m so thankful we brought her in when we did and didn’t wait. Otherwise, things could have ended up much worse.

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?

Glass Houses

Going into motherhood, I had quite a few expectations of what I thought parenting would be like. During my first pregnancy I read every book I could on raising kids (which I thought made me some sort of expert), I memorized sleep schedules, and basically expected my baby to conform to the ideal child who adapts perfectly to the textbook discipline, sleep training and potty training regimens that all the experts insist work. Because all kids respond the same, right?

Oh, and as much as I hate to admit it, I would even judge moms I didn’t even know who would be out in public with their kids, looking like a hot mess. I mean, how hard could it really be to prevent your kid from having a massive tantrum in the middle of the toy aisle at Target? And does that 2 year old really need a paci in their mouth? I thought they made it look harder than it really was.

Maybe I just got hit with really bad karma for judging in the first place. Or maybe I’m just raising a perfectly normal two year old who throws mega tantrums (the worst of course being in public places), refuses to sleep without a paci (a battle I’m too scared to fight right now- sleep is just too precious), and is constantly testing her limits. But I got a huge wake-up call when I started this journey called motherhood.

Haha you’re crazy mom if you think I’m going to smile and be cute for this picture

Parenting isn’t easy. It’s messy, it’s selfless, it’s exhausting, and on those days that you can have a sense of humor, it’s hilarious. It’s not the always smiling faces, stain-free and matched clothes, beautifully put-together households and imperfect kids we see on Facebook and Instagram. Real parenting is dealing with mega tantrums, poop (so so much poop),  living off of 5 hours of sleep, making compromises, lots of boo boo’s, bribery, huge messes, and the acceptance of chaos. Even though nothing about parenting is perfect, it comes attached with the greatest love imaginable. I love my daughter and everything about being her mom. The learning curve has definitely been tough, but full of so much adventure.

Over these past 2 (almost 3) years, I’ve accepted the need to give up those expectations I clung so dearly to, and just go along with reality. My expectations were SO stereotypical for a first time mom. And now I find most of them to be pretty humorous.

The Expectations

My baby will stick to a perfect sleep schedule- she will be a Baby Wise poster child.

No child of mine will EVER  act out in public.

No screen time until she’s three years old. Then strict monitoring of no more than 30 minutes per day.

I will NEVER bribe with food-especially not with sweets.

Potty training will be easy. I’ll just do that 3 day boot camp method.

I will never rely on a pacifier to soothe my toddler- it will be gone once she’s a year old.

Of course I will do all of the those Pinterest activities I pinned over the nine months I was pregnant. From DIY projects with toddlers to science experiments- no pin will go unused!

My child will always listen to me, because I’ve read all the books on how to talk and listen to children effectively. I’ll talk to her using toddler-ese when she’s upset (because that’s the best method for talking to toddlers- just read The Happiest Toddler on the Block) and it will work like a charm.

She will always think I’m the greatest mommy ever…no matter what.

The Reality

Sleep schedules are great, but we had to go along with what worked for us. From BabyWise to Moms on Call, Carli refused them all. I think she was almost 2 1/2 before she was consistently sleeping through the night.  I was too tired to listen to her cry it out for an hour (because that’s what she would do) and I really just couldn’t even stand the sound of it. So I let her snuggle in bed with me in the middle of the night and that was the only way any of us would get any sleep. It’s all about survival!

I would love to meet a toddler who has never thrown a tantrum in public. The best tantrums involve throwing and breaking things that I have to end up paying for- there’s a toy store in Peachtree City that I’m sure would love to never see me or my daughter again. The lesson? Never take an overly-tired or overly-hungry two year old to a store and expect them to behave.

I’m not even going to shame myself anymore for allowing screen time. It helps us survive long car rides and grocery shopping trips I can’t avoid taking her on. It allows me to have an uninterrupted run with her in the jogging stroller. It gives me 30 minutes to cook dinner. It allows me to finish a cup of coffee in the morning. Most importantly, it is my golden ticket for preventing the dreaded car nap.

You can bet I never have the toddler who is screaming the entire plane ride. Ipad for the win!

I know better, especially being a dietitian. I bribe with food often. I know, it’s terrible. But- it WORKS. It’s amazing how easy it is to get a toddler out the door when they know a gummy bear is waiting for them as soon as they get buckled into the car seat. Before you start judging- it’s an omega-3 filled gummy, thank you! Just to lessen my own guilt.

Potty training was the most frustrating experience of my life.  That 3 day method? It’s not a one size fits all. My kid wanted nothing to do with it. All that came out of that was the most severe UTI our pediatrician has ever seen. My method? I sat her on the toilet and ate a popsicle in front of her. I said she could have one too if she went. It worked, and after that there was no turning back.

At almost 3 years old, my kid is addicted to her paci. Even though she only has it at nap and bedtime (for the most part….sometimes I whip it out in desperation), I’m about as unwilling for her to part with it as she is. I’ve heard too many stories of kids giving up nap once that paci is gone. No way can either of us survive without nap. And it’s such magic! It transforms a cranky, fussy toddler into a sweet sleepy baby in a nanosecond.

New goal…weaned by kindergarten??

I’ve done maybe two Pinterest activities with her. They always fail miserably. I’m not a crafty DIY type mom- and I’ve stopped pretending to be.

I think I’ll stick to the break and bake cookies next Christmas

Hahahahaha that toddler-ese talk? I’ve tried it, and Carli just looks at me like I’ve lost my mind. Raising her has completely humbled me after reading all those books. She is no textbook child (thank goodness!) and has a mind of her own. I’ve had to get creative with my parenting techniques and usually I just go with my own motherly instincts. The advice I’ve received provides a good foundation, but I’ve had to figure things out on my own throughout the past couple of years.

I know my kid loves me. But she doesn’t always think I’m so great. She’s given me the stink eye on plenty occasions- it’s a look straight out of mean girls and she has perfected it.

How I balance the expectations with reality

I stopped reading and I take well-meaning advice with a grain of salt. I avoid judgmental people and focus on what works best for us. I scroll through my newsfeed knowing that real life isn’t so well put together. I give myself grace, and my daughter even more. I laugh at the chaos when it used to make me cry.

It can be so easy to fall into the infamous “mommy wars.” It’s hard to not aim for perfection and let everyone think that I don’t have any flaws as a mother. Shame is very real, and if I focus on what everyone else thinks I’m doing wrong, I’m doing harm to both me and my kid. My closest friendships with other moms involve the ones who can be just as transparent around me- there is something so liberating about wearing your imperfections with no shame or judgement. We are all doing the best we can to survive some of the toughest, yet most incredibly rewarding years of our lives. Why hold back?  Authenticity is so much better than trying to be perfect.

The best part about motherhood? It’s an adventure, never boring and full of learning curves. Even with all those messy, chaotic, and exhausting days- the snuggles, hearing the words “I love you mommy” for the first time, the sweet little giggles, the big grins on their faces when you see them after being gone for awhile, and the big bear hugs make it all so incredibly worth it.

Our kids after a friend and I came home from a long run- these little faces are the best!

 

And one more because….#blessed

Choosing Today

I have been rushing through life for the past 12 years, ever since I graduated from high school.

Rushing to get through each semester of college. Rushing to get that cap and gown. Rushing to be done with school. Rushing through my internship so I could finally sit to take my dietitian board exam. Rushing to my wedding day. Rushing to get a job.

And finally, rushing to buy a house, get pets, get pregnant and to get to a stage a life where I felt content. No matter what, there was always something bigger and better I was rushing to get to. And once I got there, I always had a mourning period. Mourning the stage that I rushed to get through, without realizing how the busyness has distracted me from moments I will never get back.

I can barely even remember the events of the night my now-husband proposed to me, I was too busy thinking ahead to the wedding. College is a blur of a never-ending to-do list that I was a slave to. Our first year of marriage left me constantly distracted, wondering when and where we would finally settle down and buy and house, and if and when I would be able to get pregnant. When I did become pregnant, I couldn’t even enjoy my pregnancy. I let it fly by without stopping to enjoy the little amount of time I had left with just my husband and I. And as wonderful as it is to have her here, oh how I wish I would have savored those moments when I could feel her moving around inside of me!

Although for years my mentality has been “tomorrow will be better,” that has changed since becoming a mom. Time is a double-edged sword, both my friend and my enemy. It’s my friend when 7PM comes- when it’s finally time to start bath and getting ready for bed. Some days, 7PM cannot come soon enough. It’s my enemy when I’m constantly reminded how fast my baby is growing. She’s not a baby anymore. She’s become independent and is growing into a little person with her own opinion. I’ve heard the saying so many times- The days are long but the years are short. It’s so true.

Even though I desperately want time to stop, each day feels like a marathon that I’m just trying to get through.

The first mile is getting breakfast ready- it’s slow and steady because it’s the one time of the day that we can take it nice and easy- although my mind has the whole race planned out in my head and my entire day has already been strategized. Miles 2-8 are quick- get dressed, teeth brushed, bags packed, in the car, then out the door as quickly as possible to wherever we’re going- preschool drop-off, music class, the gym, grocery store. Miles 8-13- these are painful to get through but I know once I’m through them I’m halfway there to one of the best parts of the day: naptime. Lunch, cleanup, laundry, planning dinner and doing a couple phone consults with patients is something I try to get through quickly because I want at least one mile of rest, where I can take it nice and easy before she wakes up. Miles 14-22 are always the toughest mentally- that time between nap and dinner. By miles 22-26 I’m tired but encouraged because (most days) I have my cheerleader with me (my husband) who can help me to the finish line. Bedtime- after about 60 minutes of reading, singing the same song over and over and saying a prayer for everyone we know plus anything stuffed that’s in her room- the marathon is finally over.

Don’t get me wrong, I love every part of it. But I am so guilty of being stuck in the “just finish the race” mentality. Haven’t I learned?! I have. But I can’t seem to stop myself from wishing away today and longing for tomorrow.

I have a lot to look forward to, just like I always have. I look forward to watching my daughter grow up to be an independent young woman. I can’t wait to see what her interests and hobbies will be, and where her passions will lead her to. I’m excited to take her shopping for new school clothes, her prom dress, her wedding dress. I can’t wait to see her start a family and have babies of her own. But I don’t want to rush to get there. I don’t want to miss out anymore.

This stage of life- it’s hard. I’m okay with admitting that. Even though it’s hard, I wouldn’t trade it for any other season right now. It’s exactly where I want to be.

Today, Carli wanted me to play blocks with her before she napped. I had an afternoon planned with things we needed to do, so I wanted her down for a nap at a certain time. Instead of fighting it, I sat with her and helped her build a tower. We built the same tower over and over again. It fell down, we picked it back up and started over. Even though this is an activity that would typically so easily lose my attention, I couldn’t help but notice how fascinated she was with it all. I can’t even explain the joy it brought to her eyes- to have my full and undivided attention. It’s hard for me to just sit and play without a thousand things going through my head, or picking up things around me, or running upstairs for “just a minute” to throw in some laundry. She had my full presence. That’s what she needed and we both soaked up every minute.

 

 

Tomorrow is full of new adventures and milestones. I look forward to that. But today’s opportunities will be gone if I continue racing through them. Today I’m going to choose to be present and soak up each moment slowly and with intention. Because tomorrow, those blocks will be replaced with a completely new interest. Tomorrow, bedtime will be shorter and she won’t want me to read her the same book 20 times.  Tomorrow, she’ll be one day closer to fixing breakfast on her own. Tomorrow, while it may be easier, isn’t always better. So today, I’m here.