The Mannen Wife

Hi, Nice to Meet You! I’m so glad you’re here.

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Hi There. Pull up a seat and imagine us with a warm (or iced) cup of coffee and let’s get to know each other. My name is Lesley. I enjoy calligraphy, chaos and a cold cup of coffee. I mean, I’m a mom… so I’m used to it now. Target is my love language. My life mainly consists of juggling the challenges of being a working wife and Mama to an incredible little boy. I talk a lot and feel the need to fill the silence pretty much any time there is one. I’m awkward and an overthinker and if you give me enough time, I’ll probably tell you my whole life story.

So, why would anyone wanna hear what I have to say, anyway?

A friend of mine recently told me that I should start a blog. At first I thought this was kind of funny… because I have always wanted to but I haven’t because who really cares what I have to say, anyway? But then the word resilience came to mind. People want to hear stories of resilience. To hear about how this life has knocked them down and they come back swinging. A few years ago, I wouldn’t have described myself as this person… but today? I can absolutely sit here with you virtually and tell you that I am that person. I have been through hell on Earth this year, but I’m still here, and I’m still swingin’. So if you care to follow along, I’ll give you a glimpse of navigating through a child with hemiplegia and the journey we’re on to becoming a family of four.

At the beginning of 2019 I told Alex I wanted to start a blog. I remember asking God to give me and idea of something to blog about. I was kinda thinking Calligraphy or Home Organization and LOL because boy, did He know the year I was about to have and trust me, He certainly gave me some material to work with. 

Alex and I decided in December 2018 that we were ready to start expanding our family. I had always dreamed of having kids 2 kids, 2 years apart and I knew that makin’ babies takes some time. Unless you’re one of those unicorn types of people who it just magically happens for you (Totally Jealous BTW).

Matty’s Story

Those plans were put on hold in February, ironically, the day after I told Alex I’d like to start a blog. We woke up around 4 a.m. to what we thought was our 14 month old son snoring, which he does, loudly and every time he sleeps. Something didn’t sound right, so I hopped out of bed and went to check on him. He was pale and slightly blue and having a seizure. His seizure was in status epilepticus which means, had we not woken up when we did (which is a miracle that we did), he would have died. We called 911, an ambulance came 6 minutes later. I know the time because this was the longest 6 minutes of my entire life. When they got him into the rig, his O2 sats were in the 50’s. Typing this out gives me the chills just thinking about that. And I have probably said “Thank you, God”, about 5 times since typing out this paragraph.

We got to the hospital and right away we noticed that the whole left side of his body was limp. He wasn’t reacting when they were trying to put the IV in his hand. This was so unlike him. Up until this point he had been a perfectly healthy and very active little boy. The doctors said that it could be because they had given him some versed to stop the seizure, so he was likely just ‘out of it’. We were transferred to Riley Hospital for Children and the next few hours would consist of different teams of doctors coming in and out of our room with solemn faces and stumped expressions. No one knew exactly what was happening. We heard the words, brain tumor, skull defect, stroke etc. thrown around like they were just common terms you hear every day. All the while, Matty was almost a shell of the kid that he had been the last 14 months. The left side of the room still didn’t exist to him and he continued to have seizures for the next 24 hours. They put him on some seizure meds and did an analysis of his spinal fluid, but after an MRI, the doctors suspected it was a febrile seizure that caused all of this. There was a tiny spot on his MRI consistent with seizure activity. We finally felt like we could breathe a little. The spinal fluid came back positive for HHV6 or the virus that causes Roseola, but they told us that Roseola wouldn’t cause this. That it was more consistent with HSV and they started intravenous antiviral meds.

After Matty went 24 hours of being seizure free, they decided he could be transferred out of the PICU and to a room on the regular floor. I felt like this was too early, but trusted the doctors. Around 3 a.m., Matty started to seize again, and also started non-stop projectile vomiting. A nightshift doctor came in and said “I am concerned that we need to start looking for brain swelling. Brain Swelling?? I thought to myself… HOW did we get HERE? 3 days ago he had a COLD! The next few hours were filled with chaos, sweat and lots of stress as Matty continued to have seizures. They were increasing in intensity and length and the meds were getting stronger and less effective. We were transferred back to the PICU where the doctors made the decision to medically sedate him in order to give his brain a chance to stop swelling. Once he was sedated, they did another MRI.

The neurologist called us that evening… from her personal phone number. I knew this wasn’t going to be good. She said that the whole right side of his brain was lit up with swelling. The MRI from a few days earlier only showed one tiny spot of irregularity consistent with seizure activity. She said that she thinks Matty has something called Hemi-convulsion Hemiplegia Epilepsy Syndrome and that she would give us some case studies and documentation in the morning. They still have no idea what caused this or why it happened to Matty. The next morning when I read the case studies I sobbed… and I mean, ugly sobbed… facing what I thought was inevitable for our future. Words like total paralysis, and hemispherectomy glared back at me. The neurologist warned us that there’s a very high probability that Matty would never walk again. They couldn’t make any promises about his cognitive abilities, either. But I knew that God would take care of Matty. I just had so much faith that he would restore Matty back to health. There had to be a purpose for all of this. He would use this for His glory.

Our neurologist told us that it was absolutely imperative that we control the seizures to give him the best chance of healing. Typically once a kid is seizure free for 48 hours, they will start to wean them from sedation. In Matty’s case, they wanted to wait 72. The next week consisted of constantly counting the hours since he last seized. He was wearing EEG leads and was under 24/7 video observation from the EEG techs. Every time the nurse’s phone rang I shot up from wherever I was sitting and ran to ask if he was having a seizure. I can still hear the sounds from each machine beeping in my head. I will always remember the “ding ding ding, ding ding” of him fighting the breathing tube. Once 72 hours came and went, they started to wean Matty from sedation. The problem was that he was on such strong drugs to keep him sedated, that whenever he did come out of sedation, his heart rate shot up to 260. It was not a smooth process. He was withdrawing from all of the meds he was on. We would have to wean him a little slower off of the medications.

After a day or so we were transferred to a regular room and once Matty was weaned from the Ativan, we were able to go to the Rehab unit where he received Occupational and Physical therapy 2x a day for about 3.5 weeks. Once we were discharged from Riley, Matty began seeing an OT and a PT 4x a week and in June, he started walking again! (Praise God!). We are so very thankful for our therapists. They have become like family to us, and they love Matty like their own. His personality and his cognitive abilities are exactly as they were before all of this happened. We’re still working on that left hand and I will keep y’all posted on the progress. We are incredibly thankful and we know the outcome could have been so very different.

One silver lining in this whole mess is that I learned what it was like to advocate like a mother. You should never doubt your instincts, Mamas. Maybe one day, I’ll get into the specifics, but this is enough to digest for now. Anyway, Matty just had his second birthday and he is happy, healthy, ornery and adorable as can be. (Spoken like a true Mama). I’d like to tell you that I have chilled out a little bit… but let’s be honest. We’re probably using a baby monitor until he’s 18.

Miscarriage is a Four Letter Word

In October 2019, after 2 early miscarriages in May and June, Alex and I found out that we were expecting baby #2! Of course, this isn’t my first rodeo, so I was cautiously excited until our first appointment.

Since I had 2 miscarriages before Matty and had 2 miscarriages this year, we are under the care of a fertility specialist. Once I had all of my blood work done and my HCG was high enough, she wanted to do an ultrasound. We saw the little flicker of a heartbeat on November 11th. I was measuring a little behind, but nothing too concerning. The next week, we saw the heartbeat again and it was even faster and more beautiful than the first time. The doctor wanted to see us one more time and then we would be on our way to the end of the first trimester.

I walked into our 9 week appointment anxious. My sweet, patient and stoic husband reminded me that we had already heard the baby’s heartbeat twice before. After all, this appointment was just a triple check and then we would “graduate” to seeing my regular OB. My doctor walked in and asked how I was feeling and I told her that I was doing well, anxious for some reason, but well. We all exchanged pleasantries and the ultrasound tech got started. As the ultrasound started, I started to panic. I hadn’t seen the baby yet, but something inside me knew that this appointment was going to go sideways and fast. 

The next few minutes were filled with the Dr. and the Ultrasound tech feverishly trying to locate our baby’s heartbeat. There was a long pause. A deafening and heavy silence fell over the dimly lit room. “I am so sorry, Lesley, it’s just not there. We can’t find the heartbeat. It should be right there and it just isn’t. There’s no bloodflow”. I didn’t know my mind could move so slow and so fast at the same time. “Why did I tell so many people?” “Did I drink too much caffeine?” “How is this happening?” “Is this a dream?” “There was only a 5% chance of this happening once we saw the heartbeat”. The room felt heavy. I felt so small. I forced myself to cry hoping that it would relieve some of the pain and pressure in my chest. 

They quickly whisked us into a consultation room. I am sure it’s unsettling to hear someone sobbing in the fertility clinic. Not really a good look, but at the time I honestly couldn’t have cared less. The next thing I knew, we were talking about my options. The options on how to extract the baby that we longed for for so long out of me. Part of me wanted to do it that day. To just get it overwith. Another part of me thought that I needed just a little bit longer to say goodbye. I chose to move forward with the D&C and it was scheduled for the next day. I wanted to be able to find out whether the life we lost was a boy or girl. I wanted to know why this happened. I was hoping that these types of questions being answered might bring me some closure. 

This was miscarriage number 5. The first after hearing a heartbeat. My labs all came back normal. There was no ‘logical’ reason why this keeps happening. The next steps would be to have Alex’s karyotype analyzed to make sure he doesn’t have something called a Balanced Translocation (I was tested for this also, but it came back normal). Basically, it means that someone has the correct number of chromosomes, but there’s a piece broken off and attached to another chromosome. It doesn’t affect them as an individual but when they start trying to have a family, they usually are able to find out due to recurrent miscarriages. They have a much higher risk of miscarriages than people with a “normal” karyotype. If Alex does in fact have a Balanced Translocation, we will likely go straight to IVF to expand our family as the risk that this will continue happening is very high.

The Waiting Place

The last few weeks have dragged on forever. About a week after the D&C, I got a call that revealed the baby (and yes, I am calling it a baby. It makes me cringe when they call our baby ‘product of conception’) had Turner’s Syndrome, or Monosomy X. 

It was relieving to hear that this is one of the most common causes of first trimester miscarriages. It also meant that our baby was a female. A girl. Honestly, I think hearing that she was a girl made the burden a little easier. Not because I don’t want a daughter, because I desperately do, but because I can’t picture what our daughter would look like. We have the most perfect little boy, and I think picturing losing a little boy would be a little harder to swallow. But let’s be honest… it all sucks.

Back in October, while on my way to our annual sales conference, I texted Alex. I told him that I felt like God spoke to me while I was reading on the plane. It felt like he was saying “You have a daughter, and her name is Grace.” Not that I will have a daughter, but I have a daughter. I know, I know. It sounds a little crazy. But… it’s 100% true. I didn’t know it at the time, but 2 weeks later I found out that I was, in fact, pregnant. So why would God tell me this only to take her from me? Well, I think He knew that my time with her would be limited in this Earthly life, but He wanted me to know her name. We named her Grace. She wasn’t just a ‘product of conception’. She was wanted, loved and she is ours. 

We are still waiting to hear back about Alex’s karyotype and it feels like literal hell. Okay, maybe not literal hell, but for someone who has a Plan A, B, C and D for everything, it’s difficult to be told to wait. On the Friday after the D&C, they did an HCG draw. It was still elevated at 9100. 12 days later they did another draw and it was 237. It was so odd to hear the nurse say that my numbers were ‘dropping beautifully’. Ironically, she said the same words to me back in October about how ‘beautifully’ my numbers were rising. Now, I am taking tests hoping to see just one line. It’s ironic to desire to see the opposite of everything on this journey. On one hand, I can’t wait to see just one line again so my body can reset, but on the other it feels like that one little fading line is all I have left of our daughter. 

Once I have an update, I’ll be back to writing. There are two very different paths that we will follow to grow our family depending on those results.

In the meantime, I’m celebrating the fact that God has blessed me with an incredible family and the upcoming Holidays will be a welcome distraction from all of this sad stuff. Alex and I are really looking forward to 2020 and all that the new year will bring. Thank you for following along our journey. Merry Christmas and Happy New Year!

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