…every perfect gift is from above

James 1:17 “Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change.”

This journey is something I never saw coming. God chose us over anyone else for this journey. It’s one that is something you never thought was possible. You feel special in a way, that God chose you to be the parent of this amazing child and you wouldn’t have it any different. Even when the journey is so hard, you still wouldn’t change anything. I know I wouldn’t. I would go through this all over again.

It is hard being told your daughter is incompatible with life. It’s incredibly heartbreaking. Even being asked if I wanted an abortion was hurtful. But thankfully it was not pushed on us. Our doctors were amazing. Not every person finds out their child has Holoprosencephaly during their pregnancy. But I’m actually happy that I found out during my pregnancy, and although I was never actually prepared for what was going to happen, I could research Holoprosencephaly and found the amazing group full of parents fighting the fight I was about to fight. It was a great help. I could, kind of, know what to expect what was going to happen. I could ask any questions about anything. But I will say that Google was not my friend at all! I should’ve listened and not looked at certain things, my own sister warned me. I’m not one to listen though, I have to find things out for myself.

Our whole journey started when I was 18 weeks and 5 days along and we were told McKenna had something wrong with her brain and that she could die. A few weeks and a fetal MRI later, we were told she had SemiLobar Holoprosencephaly. I didn’t even know what that was, much less pronounce it.

I was induced on March 17, 2015. Labor stressed my daughter out and caused her to lose oxygen. So I ended up with a c section. While I was being prepped for it, I asked the nurse if McKenna would go straight to the NICU…what she said has stayed with me since and my mom even heard and she couldn’t believe it. The nurse said, ‘If she lives, she will.’ I was so shocked, I couldn’t even respond. I know doctors and nurses are inclined to tell the truth, but it hurt.

I gave birth to McKenna Rayne at 38 weeks at 1:19 pm on March 18, 2015 weighing 5 pounds and 2 ounces and 18.5 inches long. When the doctor pulled her out of my belly, he showed her to us really quick and daddy got to hold her for a second. That was the very first time we got to lay eyes on the most beautiful and precious baby girl. We didn’t know it during my pregnancy, but she was born with a cleft lip. I still thought she was amazingly beautiful.

McKenna was in the NICU for 8 weeks after she was born for lots of reasons. Seizures being one of them. She’d start one medication and then another and then another and when one didn’t work they would try another. There’s one that didn’t work like they were expecting.

She started having some seizure activity right after she was born and was put on Phenobarbital right away for them. She was doing well after she started that medicine until she had surgery for her gtube…I think the pain was too much for her so she started having seizures again. To this day, she reacts to pain by having seizures. It’s gotten a little better. Seizures have been our biggest obstacle. Seizures are the worst. I used to cry every time I saw her having a seizure. It was devastating to watch your baby go through something like that and not being able to help her. When she had a prolonged seizure (5 hours), she was given medicine upon medicine and nothing helped. She just got worn out and stopped I guess. But it also seems like just about anything causes her seizures. Fevers, pain, stimulation. So much so that she is on 4 different seizure medications. Before she started a medicine called Onfi, she was having 50-75+ a day. But once she started that medicine we saw an immediate reduction in seizure activity. Sometimes I couldn’t even remember if I saw one.

We were discharged on May 13th and came right back to the ER on May 15th around 3:30 am. We couldn’t stop this seizure. We were terrified. She was readmitted and spent 10 days in the hospital. I kept asking, ‘what do we do when she has a prolonged seizure?’ And we were told there’s really nothing we can do because she’s already on so many medications and she’s getting all the help she can get. It’s not easy being told that.

Isaiah 41:10  “Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.”

There was one hospital stay in which we didn’t know what was going to happen. Doctors tried taking our HoPE away. We had to have one of ‘those’ meetings. We had to decide whether we let her go or keep fighting for her life. They told us we should think about signing a DNR. We know more than anyone the reality of this condition, but this is our child. How could we let go?

June 6th. I called 911 and told them McKenna was having breathing problems. I brought her out to the ambulance when it got to our house and she kept turning blue and they tried so hard to get her breathing better, but they said she needed to go to the hospital. When they mentioned life force, I starting balling. I couldn’t believe what was happening. When I got out of the ambulance, I told McKenna’s dad that he was taking me to the hospital now. We got there about 20 minutes before they even left in the helicopter with her. It felt like a lifetime before we could see her again. Doctors kept coming out and talking to us to get the story and everything. All I wanted was to see my baby. Finally, the moment came. And I was devastated. She was intubated and she was so sedated and didn’t look like herself at all. She was intubated for 6 days. We decided that we wanted our daughter to live. And if the extubation failed, we wanted her to be intubated again for a couple days so family could meet her and what not.

We decided to have her extubated and when they took that tube out, all of her SATs came down and I had to leave. I couldn’t watch. I felt so weak. I couldn’t believe it. I finally mustered up enough courage to go back in and they were still working on her. But she pulled through. (I’m crying while thinking about this and typing it out.) I remember begging God not to take my little girl. And he followed through with my request. And I got to hold my daughter for the first time in 6 days. It felt so good. She was just looking at me with those big blue eyes and I could see the love she had for us. I will never forget this hospital stay. It’ll always be in the back of my mind. I’m forever thankful that our HoPE wasn’t taken away. HoPE is everything.

Psalm 139:13-16 “For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the Earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.”

I started a Facebook prayer page for McKenna back when I was pregnant. It’s always been like a journal type thing for me and a place for all of her pictures. It now has over 33,000+ ‘likes’. I never expected it to get as big as it’s gotten. It’s absolutely crazy to me. But they all genuinely love and care about McKenna and they’ve never even met her. But, we’ve also come across some terrible people and some very offensive comments. We have been told we should’ve aborted her, she doesn’t deserve to live, she’s abomination, we should ‘burn IT with fire’, she’s ugly so we should kill her, people saying we should nuke her, and even comparing her to Hitler. Some have even gone as far as drawing Hitler mustaches on her face and many other things. Even saying I’m torturing her and I’m doing this for attention and exploiting her and I should hide my ‘circus freak’, and then at the end of all this they’re saying ‘God Bless’…I think God would be ashamed that you are bringing down a little girl who deserves to live her life just like every other baby. No she doesn’t look like everyone else, but why is that so bad? Just because she looks different doesn’t mean anything. When I saw her face for the first time, it was love at first sight. I thought she was the most beautiful little baby in the world.

Joshua 10:25  “And Joshua said to them, “Do not be afraid or dismayed; be strong and courageous. For thus the Lord will do to all your enemies whom you fight.”

I always try not to say anything about the awful people, but sometimes I just can’t help it. They’re being awful to my child and it’s my job to protect her and defend her. McKenna’s page has done more good than harm. There’s been some families that message me thinking their child was the only one that had Holoprosencephaly and it was nice finding out they weren’t alone. And that it helps seeing McKenna. I think that’s amazing and it makes me feel so good that my baby is helping others out there. No McKenna doesn’t know, but I do tell her about all the ones that love her.

All McKenna will know in her life is love and that’s what she deserves. She deserves everything in life, as does any child. Even if she didn’t have Holoprosencephaly and was a ‘typical’ child, she’d still be treated as she is now. She’s spoiled. And the best thing of all is that she knows who her mom and dad are and she loves us just as much as we love her.

Philippians 4:13  “I can do all things through Christ who strengthens me.”

2 Comments on “…every perfect gift is from above”

  1. Your story is such a blessing to me. Our sweet little grandson was just born 2 weeks ago. He may be in the hospital another month. He was diagnosed with holoprosencephaly before birth. I have used Psalm 139:13-18 with his name inserted to pray since I found out.

  2. Thank You…
    Great roots of thyme written here…
    On earth thyme growing…
    Children… Gods Knowing…
    Best thyme gathered;)