After our sweet baby C was born, she seemed pretty normal to me.  She slept, she drank milk, and she had dirty diapers. Looking back, she was less active than a normal baby those first few weeks, but she seemed to be doing well.

I remember the first time she had a seizure.  I was feeling good and I was ready to take her out and ‘show her off’.  She was in the pack and play while I was packing the diaper bag.  I went over to get her to put her in her car seat and she was blue and wasn’t breathing.

I freaked out!

My baby was blue and not breathing.  My baby that was a do not resuscitate.

All of a sudden I realized how much I loved her and wanted her to be with me.  I think that up until that moment I had been subconsciously trying to protect myself from the heartache to come by not bonding with her.  I think I was trying to treat her like a patient–taking great care of her but trying to distance myself from the emotions.

Of course I couldn’t get my husband on the phone.  He was at a lecture with all of the other residents.  So I called all the residents. One at a time.  No one was answering.

I picked her up, flicked her foot…then I did a rescue breath.  I put her in her car seat and drove like a bat out of hell to the hospital (3 minutes away).  I pulled into the parking lot, opened the back door, and she was pink again! She was moving and doing her normal things…like breathing!

Then I thought about what I had done and what I should do at this point.  I had given a rescue breath even though my husband and I had agreed we weren’t going to do that.  But I had done it.  I wasn’t ready to lose my little girl.

So I was sitting in the parking lot of the ER, crying, with my beautiful PINK baby wondering what I should do.  If I take her in to the ER, there will be tests and poking and prodding that we didn’t want.  And I could explain the whole thing, but then what would they do? What would be the point of me taking her in there if I wasn’t going to let them do anything?

I called her pediatrician’s office and we went directly there.

(Oh, and my husband called me back when he realized I was calling all of the ortho residents.  He agreed with me to take her to the doctor and not the ER. )

Our pediatrician was great.  We met with him prior to Caroline’s birth.  He had an interest in genetic abnormalities and he was open to our treatment plan (which was to keep her comfortable). When we got to his office, they did her vital signs and he looked her over closely.  Everything was pretty normal. I was able to take a picture of her during the episode and I showed it to him.

He thought it was likely a seizure but he wanted to monitor her and be sure it was a seizure before starting any medications.

Everything was pretty normal for a couple of weeks after that episode.

Then she started having seizures for sure.  She would do a funny eye thing and stop breathing.  Our pediatrician came over to our house one Sunday night so he could see her and see exactly what was happening. He felt they were seizures and that we could start treatment.  We discussed the treatment options and felt that treating the seizures would be a comfort measure for her because seizures probably don’t feel good. She started having more frequent seizures. We went to his office the next day to get the prescription.

She was seizing and turning blue at least every hour.  We started phenobarbital at the recommendation of our doc but we weren’t sure if it was going to work.

My husband and I were pretty sure that she wasn’t going to live very long because she was essentially in status epilepticus (where you continuously seize and don’t recover in between).  We just did the best we could.  Held her, rocked her, fed her when she would eat.

We were so stressed.  We went to our favorite restaurant to meet a friend there and have a drink.  I remember one middle-aged woman coming up to us…my husband was holding Caroline…and saying what a beautiful baby she was–while she was completely blue! I just looked at my husband and he said thank you and we just chuckled to ourselves about how clueless this lady was.

The phenobarbital didn’t start working right away.  By day 3 on the meds she was down to 5 seizures that day.  The next day she didn’t have any.  We were so thankful that the medication was working and she was better.  She loved the taste if the medicine too–I mixed it into her breast milk or formula bottle.  We called it her ‘pink milk’ and she sucked it down!

(I stuck my finger in it once to taste it, it was pretty sweet but mild.)

The next few months we continued the phenobarbital.  If she had breakthrough seizures, we increased the dose. Usually you dose phenobarbital and check levels in the blood to adjust but we didn’t want to have to have her blood drawn all of the time (because we wanted to keep her comfortable) so our pediatrician agreed to increase it based on her seizures. He also agreed to treat the seizures himself instead of sending us to a specialist…until October.

We went to a wedding the first weekend of October in northern Michigan and we brought sweet baby C with us.  It was the wedding of my dear friend from residency and I was a bridesmaid.  We went to the rehearsal dinner…I just put our sweet baby in my Ergo carrier and wore her the whole time 🙂 The next day we went to a coffee shop and had breakfast and ran into another family with a little girl the same age as Caroline wearing the same cute fleece vest outfit!

I left my husband with the baby and went and got ready with the girls. While I was gone, Caroline had her first infantile spasm.  (A type of seizure specific to certain brain abnormalities like lisencephaly, Miller-Dieker, and tuberous sclerosis).  My husband didn’t know what it was.  He recorded it and sent it to me.  (We later showed it to our doc. ) What he did know was that it seemed like she was in pain.  She would scream and cry during it, seem to recover and do it again.  It was horrible to watch.  We tried Tylenol to see if that would help, nope. We increased her phenobarbital since we were out-of-town and that didn’t work either.

We went to the pediatrician when we got home and we showed him the video.  He told us he thought that they were infantile spasms and that they are notoriously hard to treat.  He said he didn’t feel comfortable treating those seizures and that we needed to go to a pediatric neurologist.

To be continued….