October 23 = Eventful Day

We started off the day by heading to Liam's appointment- I brought some playing cards for Malia to play with in hopes that she would be at least slightly entertained- it was pretty successful!

Then we headed to the Y for Malia's gymnastics class.  It's so fun watching her run around and just doing whatever she wants!  

On the way out of the Y, Malia started complaining about her nose- I looked in it and could tell something was in there so I took Liam to the CDC and headed to the ER- sure enough this is what they found... I have no clue what it is- it was black and spongy- who knows.

 While I was calling her PCM to let them know we went to the ER, this happened:

It really is incredible how quickly they can make such a big mess.

September 11 = ER Day

So the title can be alarming but the way Tricare works- because our primary care doctors work at a military clinic and those are closed on weekends, if we have an urgent matter on a weekend, our only option is to go to an urgent care center or the ER.  They don't have any urgent care centers near us that participate with Tricare so... Malia's ear had been bothering her and today some stuff started coming out of it so I decided to take her to the ER.  They wrote us a prescription for ear drops and an antibiotic and sent us on our way- pretty painless!

October 1 = Seizure Day

We had a feeling this day would come but it still took me by surprise.  Today was supposed to be a super exciting, fun day.  Zachary had an early day at school so he was leaving as I woke up but I got Malia up, changed and fed and then tackled Liam's morning routine.  We left, on time, for our 45 minute drive to the pumpkin patch!  I had memories of last year's pumpkin patch visit- we got cute pictures out of it and I had fun but Liam was a bit too young to enjoy it himself.  This time, he was going to ride a cow train, whatever that is, and a pony!  We had a ticket to pick out a pumpkin and to take a hay ride.  We got to the pumpkin patch, Malia was in her carrier, Liam was in the stroller- lunch was on the picnic table waiting for us for when we finished the tour and then it happened.  Something made me look down as we were walking towards the tour guide and Malia was having a seizure.  Following Zachary's example from almost 2 years ago, I stayed very calm and told the people around me my baby was having a seizure.  Liam's assistant teacher took Malia from me while I called 911 and while I was talking to the dispatcher, a parent who also happens to be a nurse started attending to her.  The dispatcher was asking me questions that I would, in turn, ask the nurse.  The ambulance got there pretty quickly and we loaded Malia and her car seat onto the ambulance and I drove Liam to Howard County General Hospital.

Funny side story.  As we were waiting for the ambulance I attempted to call Zachary.  His phone was doing random things all by itself and somehow answered itself while he was in class.  The whole class could hear me saying, "Hello?  Hello??" because I heard it pick up but Zachary wasn't talking.  After I hung up, one of the wives of the guys in Zachary's class had texted a group of us wives that I was able to respond to without clumsily trying to assemble a group text of my own and said "Malia just had a seizure and Zachary's not answering his phone.  Can someone get their husband to tell him to call me?"  At this point, all the guys in Zachary's class started looking at him and pointing at their phones trying to motion to him to look at it assuming I had texted him telling him to call me but instead, he thought they were trying to tell him to turn his phone off, that they could hear sound coming out of a phone and it was his.  After a few minutes he put together that maybe they were trying to say something else so he got his phone out and was able to email me and tell me he was on the way even with a very messed up phone.

We got to the hospital and they hadn't done anything yet besides hooking her up to a monitor.  Zachary got there about 45 minutes later and soon after that, they decided to discharge us.  We had told them we have the strongest possible family history of this and that she's going to have another seizure but they basically said if she has another seizure to bring her back in.  As we walked to the car we decided that when, not if, she had her next seizure we would take her to Walter Reed since Liam is established with a neurologist there and both his and Malia's records would be easily accessible being that Walter Reed is a military hospital.  As we were putting the kids in the car, Malia had a seizure.  We hadn't even left the parking lot.  So we stuck with the original plan.  We went home and grabbed some things, dropped Liam off at a friend's house and headed to Bethesda.  My parents left around that time and would pick Liam up from the friend's house and took care of him until we got home after what seemed to be an eternity.

This was Malia in the ER at Walter Reed- it took a while to get admitted but finally we were and she ended up having nine seizures total.  As they did with Liam, they wanted to make sure the cause of the seizure wasn't something scary so they did lots of tests.  Come to find out, Malia is an exceptionally hard blood draw so every time they would take blood, it took multiple tries.  She blew three IVs as well and for the third placement, had to go under anesthesia.  Because of all of this distress placed upon her, her heart rate went through the roof and they decided she needed to be moved to the PICU, convinced that whatever was causing her seizures was also causing the increase in her heart rate.  The stress of multiple IVs and blood draws was too simple of an answer (although it ended up being the right answer).

 In addition to the IVs and blood draws, she also had a CT scan and EEG and an EKG.

July 22 = Acid Reflux Day

When Liam was a few days/weeks old, he started having these episodes that looked like seizures.  Everyone in my family on my mom's side had seizures as a baby- I remember my brother having them in the hospital- we were about to take him home when it happened and a really nice nurse took me to a different room and we colored and talked about being a big sister- I was six but I remember it pretty clearly.  Because of our strong family history, I was expecting Liam to have seizures.  So when he had these episodes, I figured that's what they were.  We took a video and showed it to his pediatrician.  They referred us to neurology but we couldn't get an appointment until two months later.  Every doctor we showed, though, said they weren't seizures- it was severe acid reflux.  We put him on Zantac and by the time we had his neurology appointment, the episodes had stopped.  Fast Forward.  When Malia was born, we were on the lookout for seizures but were hoping for the best since Liam didn't have any until he was 5 months old- maybe Malia won't have any at all!  Well on the 22nd, she started doing the same thing Liam did.  They're a little different- they aren't quite as bad for as they were for him and we are hoping it stays that way.  I called the pediatrician to make her 1 week appointment and mentioned the episodes.  A nurse called me back within 5 minutes of making the appointment and recommended we take her to the ER to make sure they weren't seizures and that she didn't have a fever or anything that was obviously wrong going on.  So Mo and I took Malia to the ER.  Her temperature was 97.8 and she didn't have any episodes while we were there.  Zachary was on his way home from class so I was calling him periodically to update him.  At one point, the doctor had consulted a pediatric neurologist at another hospital and came back with their plan of action which was to do a 24 hour EEG.  I would have been okay with that but then she explained that Anne Arundel doesn't have the resources to complete this test so we would have to be transferred to a hospital in Washington, DC.  She also wanted to do blood work which they would do through the IV they would have to insert anyway for the transport.  I immediately started crying because I had flashbacks to tiny little Liam with an IV in his head and I just couldn't imagine having to watch Malia go through the same thing.  When the doctor left Mo asked me if I was okay with what she said.  At the time I wasn't remembering that as a parent, I have the option of disagreeing with the doctor.  This is dangerous because I do not have a medical degree but from my experience with Liam going through very similar symptoms, I really didn't think they were seizures.  If we went through this whole ordeal and she didn't have another episode in the following 24 hours (which she didn't), it would have all been for nothing.  I called Zachary to tell them the plan and he said he didn't want to do this- he was more aware of his parental choice than I was.  So he came to the hospital and talked to the doctor and explained where we were coming from.  She wasn't super understanding- you could tell she really thought we should go but she arranged for the discharge anyway.  My dad has a theory that each time one of us in this family has a seizure, the doctor in charge wants to be the one to figure out why these seizures have been happening to every baby for generations.  We just didn't want Malia to be their guinea pig and I'm glad we stood our ground because the EEG wouldn't have caught anything as she didn't have any episodes during the time she would have been monitored.  She's had more since and they are looking more and more like the ones Liam had.  They're also consistently after feeding which supports the acid reflux theory.

We took her to the pediatrician the next day and explained everything that happened.  He said that as a doctor, he sees where the ER doctor was coming from wanting to rule out seizures but that as a parent, he agreed with our decision.  He pointed out that he has the advantage of knowing us as parents (he's Liam's pediatrician as well) and knows that if we refused to follow the doctor's recommendation we had a valid reason and that our parental instinct is valuable.  He told us what to look for and strongly recommended that if she had another episode that lasted more than 3 minutes we take her back and we do whatever the doctor said but that we shouldn't worry too much about these 10-20 second episodes.  

So we are anxious about these episodes and we hate to see her go through the pain Liam went through.  I'm adjusting my diet, we're trying to burp her more and have her spend a lot of time upright vs. lying down and she has another appointment with the pediatrician on Monday.  We got a video of an episode so we can get his opinion.  Hopefully we can resolve this before too long.  And on a lighter note- here's a picture of both of the kiddos in the rock 'n' play.