Since Hannah was born 6 weeks early because of preterm premature rupture of the membranes (PPROM), I have been taking progesterone injections weekly for the past 11 weeks, beginning when I was 16 weeks pregnant.
Overall, these injections have had incredibly horrible timing.
My first injection happened the day after Hannah was discharged from the hospital. A note about Hannah– in August she started having breath holding seizures. When she is over-tired and cries, she sometimes holds her breath, which makes her go into a seizure. The first time it happened, I thought she was dead. She went limp, stopped breathing, and her eyes rolled back in her head. Hysterical and panicked, I ran with my lifeless baby over to Pam’s house. I couldn’t figure out how to open my cell phone, and it took me way longer to dial 911 than it should have because of my unhinged panic.
When EMS came, Hannah had started breathing again, but she was acting weird. They transported us to the hospital in the ambulance, and we were discharged later that day. Apparently this happens with some children? Doctors seemed unconcerned. I was just incredibly happy that my baby came back to life. I was in shock.
About a month later in September it happened again. Instead of passing out this time, however, she went into a full on seizure. Her eyes rolled back, her arms and her arms and legs jerk. We took her back to the hospital. Once she rallied, the doctors said it sounded like breath holding seizures. Some children hold their breath when they cry, which sends them into a seizure. Once again, it seemed like no big deal. They told us we didn’t have to bring her in to the ER anymore if it happened again, as long as the seizures remained the same. If she has one lasting 2 minutes or less after crying, then no big deal.
Just to be sure, they scheduled her for an EEG in November. She had to have 32 electrodes glued to her head for 12 straight hours. The EEG maps brain activity and determines if there are abnormal brain waves that may indicate epilepsy. My very active, stubborn 17-month-old fought it tooth and nail the entire 12 hours. Thankfully, everything was normal. No epilepsy.
In December, they scheduled her for an MRI just to be sure she didn’t have anything else happening in her brain to cause seizures. Toddlers are sedated during MRIs. First they administered the Versed. The nurse said it would make her very drunk. She should be infantile in that she would be so zonked out, she may not have control of her neck. They give toddlers Versed so that they can put the IV in. Hannah was completely unphased by the Versed. Nurses were shocked and had to try to put the IV in Hannah’s arm while she kicked and screamed. It was hell.
Finally, they got the IV in, and they knocked her out with Propofol. This combined with the Versed, they said, should keep her out until up to an hour after the MRI. Relieved, mom and I left Hannah with the doctors as they rolled her into the MRI.
We eagerly waited in the waiting room for over and hour and a half. In my mind, I was thinking it was taking WAY too long. When they finally called us back, the doctors and nurses looked harried and exhausted.
Hannah, they told us, woke up in the MIDDLE of the MRI and yanked her IV out. They tried to put the IV back in, but she fought so hard, they couldn’t do it in her arm. They had to put the IV in her jugular and give her more medication. The doctor said, somewhat amused, “Hannah will definitely not be a cheap date.”
So when I say Hannah is strong-willed and hard-headed, I am not kidding or exaggerating. It took multiple doctors and nurses to subdue my 20-pound, 18 month old daughter, and even then, she willed herself to reject the medication or something. Even though they gave her way more medication than they usually give to babies, she woke up IMMEDIATELY when they rolled her out of the MRI.
Christmas Day 2017 was Hannah’s last breath holding seizure. We made it to March without any incident, and we were all thinking she had grown out of them. We were wrong.
At the beginning of March, Hannah was hospitalized for 4 days. On Saturday, March 10th, Hannah had 4 seizures in one day. We had just had the Feast of Caring and Sharing the weekend before, and Brian and I had both been sick with a stomach virus. Multiple people around the community got sick as well. Hannah came down sick on Thursday. The sickness usually only lasted 24 hours, so by Saturday morning we thought she was in the clear. That morning, Brian was putting Hannah’s shoes on–shoes she picked out and insisted he put on her–when Brian yelled for me. While he was putting on her shoe, he noticed her foot was clenched and realized she was seizing.
When I walked in the room, she was on the bed, arms and legs jerking, eyes rolled back. I was way more terrified than usual because it WASN’T because of breath holding. She hadn’t been crying at all and had been pleasant and happy all morning.
Because of her past trauma and extreme dislike of hospitals, I didn’t want to take her back to the ER. She HATES hospitals, y’all. And when Hannah decides she isn’t doing something or cooperating, she means it.
Usually when Hannah has a seizure, she goes into a postictal state. She sleeps for hours, and is miserable and irritable when she wakes up. Then she sleeps again, and when she wakes up after the second nap, she is fine. After Hannah’s first seizure Saturday morning, I held her while she slept, thinking it would be hours before she woke up.
Instead of her usual postictal state, however, she woke up after an hour. She began crying inconsolably. Then she seized again. Brian and I left David with my dad, and we rushed Hannah to the ER. She had never had more than one seizure in a day. In fact, she had never had more than one seizure in a MONTH.
While at the hospital, Hannah had two more seizures. The last one was the scariest. After her usual 2 minute seizure, she stopped jerking, but her eyes were still listing to the right when the doctor pulled up her eyelids. Then she started jerking again. She was having back to back seizures. They finally gave her Valium to stop the cycle of seizures, then an anti-epileptic drug (I forgot the name).
It seemed to be the doctors’ consensus that she did, in fact, have epilepsy, despite the fact that there were no indications on her EEG. Her four seizures in one day seemed to indicate that SOMETHING was going on.
They admitted Hannah into the ICU later that evening. They did another EEG. She was also hooked up to blood pressure cuff, pulse ox, heart monitors, and an IV. When Hannah woke up, she was incredibly angry. From 10 p.m. to midnight, she fought me. Any time you have a flailing, kicking, screaming toddler, it is tough. Hannah’s ire compounded by the fact that I am pregnant, exacerbated by the fact that she was hooked up to dozens of wires while she was twisting and thrashing in my arms…yikes. I wrestled with the beast for 2 hours.
I called the nurse in shortly after 10, begging her to give Hannah SOMETHING to calm her down.
“She will pull ALL of these monitors
off of her, and she will rip out her IV. You don’t understand what you’re up against here. PLEASE.” The poor nurse couldn’t do anything, so I kept wrestling.
Finally, the ICU doctor came in. He looked familiar, and then it dawned on me. This is the doctor who oversaw her MRI. This is the harried young man who explained that Hannah ripped out her IV half way through.
“Doctor, this is Hannah. You did her MRI in December. She is the one who ripped out her IV!”
His eyes got wide, and he pointed at Hannah and immediately said, “SHE IS THE ONE WHO RIPPED OUT HER IV?! I still have PTSD from that. I have never seen anything like it, and probably never will again.”
Needless to say, he directed the nurse to give Hannah some Benadryl. They also switched her IV to her foot, and wrapped it up very tightly so she couldn’t rip it out. When I asked the nurse, she said, “The Doctor said Hannah is very determined.”
Hannah’s EEG still showed no abnormal brain waves. The next two days, I had to see my precious girl zonked out like a zombie. It was like she was gone. She wasn’t herself at all, and I was devastated, thinking this was the new normal. All of the things that drive me crazy about her soon were so incredibly precious. I remember wishing she would refuse to do something, climb the crib, anything to show her normal spunk. But there was nothing. She was easy, pliable, and completely undramatic. A sick, listless baby girl.
Finally on Tuesday, we had answers. Turns out she does NOT have epilepsy. She had both Norovirus and C-Diff, a really bad bacteria. Norovirus is the stomach virus that goes around on cruise ships. It is extremely contagious, which explains why so many people got sick after being at the Feast of Caring and Sharing. We have no idea how she got C-Diff.
We had no idea how sick our baby girl was. Apparently she was so run down and her electrolytes were so depleted after struggling with the virus and bacteria, that she had the seizures. She already has a low threshold for seizures; being so sick triggered the harrying events of Saturday.
The neurologist immediately took her off the anti-epileptic medication. We were sent home that Tuesday with a prescription for diastat (valium), in case she ever has a seizure longer than 5 minutes or back to back seizures again. She hasn’t had a seizure again yet.
So, folks, the next day after this harrowing experience, I received my first progesterone injection. Talk about horrible timing.
These shots have lots of side effects, but the one that has been the worst is the depression. I think the progesterone combined with receiving Daniel’s diagnosis 2 weeks later is the cause.
I get the injections on Wednesday each week. Friday through Sunday every week I am a walking zombie.
Breathing is hard. Functioning like a normal human being is impossible. I found a poem online that perfectly describes how I feel from Friday-Sunday:
Every thought is a battle,
every breath is a war,
and I don’t think
I am winning anymore.
If I seem listless and down when you see me on those days, it is because of this horrible depression. The fact that I am even out of bed is a victory.
Magically on Monday, the emotional side effects disappear, and I am normal again. I have 3 normal days before the zombie days set in.
I have learned a lot from these depressive episodes:
I see a small glimpse of the struggle of those who suffer with this for weeks and months on end. I cannot imagine how people who suffer from major depression manage. Please let me know if I can pray for you. Seriously.
This is totally a chemical imbalance. Something in my brain switches on those days that makes me unable to function. I am not moping or more sad than usual. I just CAN’T on those days.
Thank you to everyone who has had patience with me, especially my amazing family babysitters and my husband. I can’t express how thankful I am for all of you.
Last week, my mom accompanied me to my injection appointment and watched the nurse give the injection. The hope was that she would then be able to give me the injection today.
So, this morning, my mom attempted to give me the injection. Let’s just say it didn’t go off without a hitch.
First of all, I was mailed two different sizes of needles, an 18 gauge (big) and a 21 gauge (smaller). We surmised that we were supposed to draw the oil up with the big needle, then administer it with the smaller one. But we couldn’t figure out how to change needles mid-way. Then we couldn’t figure out how to draw the oil up into the syringe.
Pam saved the day. As a diabetic, she knows how to deal with needles and medication. She solved the needle crisis and then easily explained how to draw the oil up.
But then she had to inject me. She slowly put the needle in, which was agonizing. The medication itself is really thick, so it is always painful going in, but today it was more so.
By the end, I was crying. It wasn’t the pain from the injection, it was the bitterness at even having to do this.
First of all, the medication is like liquid gold. My insurance is billed $600 PER INJECTION. I was terrified we would spill the medication or it would be compromised or something. Thank GOD it wasn’t.
Second of all, my baby NEEDS this medication. Most women go into labor 7 days after receiving their last injection. The idea that, if we screwed this up, my baby could be born next week, was terrifying. It is never good for any baby to be born prematurely at 28 weeks. For Daniel, an HLHS baby, to be born at 28 weeks would be incredibly horrible.
The pain, the fear, the uncertainty, came crashing down on me. I had a bad morning.
Don’t get me wrong. I am so thankful for the medication. I am thankful for modern medicine. I am so thankful God chose Daniel to be born in this day and age when there is so much doctors can do. But it is tough.
It has been a really, really rough year, folks. I am on an emotional roller coaster. Writing is the only way I really have energy to communicate right now. I am learning what it means to “Rejoice always. Pray without ceasing. Give thanks in all circumstances” (1 These. 5:16-17)
Living with the joy of Christ does not always look like happiness. When every breath is difficult, when I cry all day for no reason, when I just can’t, I still have the certainty of salvation. I have the certainty that I am being cared for by the good shepherd and looked after by the creator of the universe. Thanks be to God.