How Our Lives Changed- Diagnosis Journey: Part 1

Diagnosis Journey: Part 1-Epilepsy

 

 We were ecstatic when we found out we were pregnant, and even more excited with we found out we were having another little baby girl. Our lives before Sage were pretty normal. We had a toddler who was just as busy as any other, Brandon was working full time and I was lucky enough to be able to stay at home with Clover.

 

I guess you could say that Sage is our COVID baby because we found out we were pregnant with her right after we had COVID. In hindsight, I even had a feeling throughout my pregnancy that something was different this time around but shrugged it off as just a different pregnancy. I didn’t have many complications besides being diagnosed with Preeclampsia the day I had her. I had Clover by emergency c-section and decided to do a repeat c-section with Sage as well to avoid all the possible risks of a VBAC.

 

Earlier in the week I was feeling weird, so I took my blood pressure at Walmart, and it was pretty high…so I called in (it was a Sunday) and it just so happened that my doctor, Dr. Leavitt, was the one on call. He wanted me to come in then but agreed to see us first thing in the morning. By the next day my blood pressure had gone down but they still took my blood just in case.  A few days later I got a call early in the morning telling me that I had Preeclampsia, and I was going to have a baby that day. I called Brandon and told him to get home and we got my sister to come and watch Clover.

 

We got to the hospital and it was calm and relaxed (as calm and relaxed as you can be giving birth ). I walked into the OR and they did the c-section. I was able to do skin on skin with her while they sewed me up and it was so healing for me after the previous emergency one. When Sage was just a few hours old she was sighing when she breathed and I thought she was “self-soothing”, but apparently it was a sign she could be struggling to breathe. After some tests everything seemed normal, but little did I know it was a sign of bigger things to come.                                                                                                                                    

 

 

We were in the hospital for less than 48 hours total before we were released to go home. Sage was doing great, and I was doing well enough to go and we were ready to be home. Clover got to meet her new baby sister, and I loved the bond they immediately had with each other, and still have.

 

Everything seemed great until she was about 6 weeks old. We started noticing spasms type movements, and just felt like something was wrong. I actually tired to not look it up too much because I was scared of what I would find. But after they continued for a few weeks, I did start looking them up more and more.

We suspected were Infantile Spasms, and after they started increasing, we took her in to our doctor. The first time we took her she was 2.5 months old, and he assured us he had never seen a child with IS before in his career but to watch it until her 4 month well child checkup. It did give us some reassurance, but the uneasy feeling that something was wrong still stayed with us. When the Spasms increased over the next month we went in again and saw the PA in the doctor’s office. He told us right away that he believed in Mother’s Intuition and got us referred to a pediatric neurologist. At this point she was 3.5 months old and had just rolled over for the first time.

 

It was Friday July 23, 2021, and I tried to call the Neurologist’s office to get an appointment but couldn’t get through. So, Monday morning, I called and accidentally called too early and only reached the EEG tech. I told her what was going on with my baby girl and she got scheduled for 2 weeks later…I tried to call multiple other neurologists to get an earlier appointment, but they were all booked even father out. That night the Tech called me back and said I had been on her mind all day and they had a cancelation the next day for an EEG and offered it to us, of course I said yes.

 

The next day, while Sage was having the EEG done, the neurologist had another cancellation, so we were able to actually meet him that same day. He reviewed the EEG on the spot and said it looked normal, but Sage then had a cluster of spasms while he was in the room with us. After seeing her do that he ordered a longer EEG with video. So, we had to go back the next day to get that all set up and take it home with us overnight. It was one of the most stressful days I had ever had. I had to cart all the equipment everywhere we went while it was all attached to her. We then had to take it all back the next morning.

 

Because it was a longer EEG it took longer to review it and he said he would call us back the next day with the results. He called and said the machine had died in the middle of the night so didn’t get the full read, but from what he had it was still normal. He had me save his number just in case something else happened with her, or even to give him the good news that the spasms had stopped. The results being normal didn’t give me the relief I was hoping for…so we just sat in our anxious state waiting for the movement to stop, and praying they weren’t seizures.

 

Then 9 days later, the day after she turned 4 months old she had tonic-clonic seizures (grand Mal seizures) all day. I had pulled her into be to nurse her so we could all sleep longer, but I felt her little body tighten up super ridged. I hurriedly got her and Clover out of bed and called the neurologist, all the while she was stiff and twitching. I had never really seen a seizure before, and I was shaking as well out of fear and not knowing what to do.

 

The neurologist didn’t answer so I texted him, and he texted right back. I told him I thought she had had a seizure, but it was over by that point. He then told me to get a video the next time it happened and send it to him. It did happen again…over half a dozen times that day, every time she woke up, I had to watch my beautiful, innocent baby girl struggling to control her body and seizing. I called Brandon and told him what was going on, but we waited for the neurologist to get back to us. As soon as he saw the seizures, he told us to go to the ER and he had already called ahead letting them know we were coming and what meds to give her. I found out afterwards that he was actually out of the state visiting family, but he still helped us get Sage what she needed.

 

We got to the ER, they took all of us back, even Clover was there, and proceeded to do a bunch of tests on her. But the worst one by far was the urine sample because they had to do an in-and-out catheter, and Sage just screamed. Clover was sitting on Brandon’s lap at the time, and she told him very insistently that she needed to be with her sister, and she came and held Sage’s hand while they did it.

 

We were in the ER until about 4 A.M. and then had to find a 24 hour pharmacy to get her first ever medication, Keppra. The next day, she had the least amount of seizures she had ever had and seemed like a whole new baby! I needed a name to put to what was going on with my baby, so I asked the neurologist what it was that she was going through, he said she has Epilepsy. I was so hopeful that things were going to get easier, but to my dismay just a day or two went by and the seizures returned.

 

It was one of the worse days of our lives, and it is fitting that I choose today, August 9, 2023, on the 2 year anniversary of this life changing day, to start this Blog. This was the beginning of a whole new life for our whole family, new expectations, new realities, and new struggles I had never imagined could happen to us.