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Madilynn Anahera

Madilynn Anahera, baby with anencephaly

 

Hello my name is Leiana and this is my story.

Phillip and I got married on November 19th, 2011. Perfect day. The next step was planning to get pregnant. I have a 4 year old daughter from a previous relationship and she is our world. I had her vaginally when I was 18. I couldnt think of anything better than giving her a baby brother or sister.

We tried for a few months and one-day it finally happened. That positive pregnancy we had so hoped for and prayed for. I had scheduled an appointment that would be a few days away. Anxiously we waited for those days to pass. Going into the ultrasound room I had a little fear from my very first pregnancy (before my daughter) a miscarriage at 7 weeks. I suppose many get that uneasy feeling after losing a pregnancy. I'm not sure what it was but I was scared for it to happen. Our ultrasound tech started to scan and there was our tiny baby but no heartbeat detection because I was only 4 weeks along. Now even more fear and worry.

The weeks couldn't go by fast enough for my next appointment but finally it did and there it was a beautiful heartbeat.
Things went fine at the following appointment and then the big day came gender revile!

Boy or girl. Pink or Blue. She began to scan and then "its a girl"! Honestly I was beyond happy and so was daddy and sissy (she even got to watch because we brought her along). I immediately got on my phone to spread the news via text. I was still being scanned in the process of telling my mom and I could tell things were off. We were asked to go across the street to our local hospital because their machine scanned better. I got a transvaginal scan and then was sent back to talk with the doctor. Phillip and I both didnt think anything of it, I mean we just saw her. 10 fingers 10 toes. Perfect little girl.

We sat in her office and here came the news: "Your baby doesnt have a brain."
What???
How is that even possible?
Trying to fight back the tears because I had Michelle in my lap.
Why us? What does this mean? What do we do now? What will I tell Michelle?
Then the tears came like a water faucet had been turned on. All I could do is reach for Phillip's hand and hold it tight. I remember vaguely Dr Bennett saying Anencephaly and then asking about termination.

Madilynn Anahera, baby with anencephaly

I never once thought about termination, I mean I had one pregnancy already that ended in a miscarriage, I could never end the life of a child when I'm in control. It's just not me and I wouldn't be able to live with myself. Everybody is given the choice and I dont blame anyone for doing what they think is best for them and the baby.
You're pretty much given a death sentence for your child and it is so hard to even begin to know what your going to do. I just placed it all in God's hands and never once looked back.

We walked out to our car and that's when it hit hard. I couldn't breathe. My heart was shattered. I immediately called my mom and told her... She didn't know what to say it took us all by surprise. None of us had ever been in a situation like this. The tears were flowing from both ends of the phone. Next was Phillips mom, he attempted to call her and I heard the "hello" the words just couldn't leave his mouth, only tears coming from his eyes. A hurt that was so deep. His first baby. His baby girl that was going to leave us to be with Jesus. All I could do was take the phone and tell her... here comes the tears again from both ends.

The next few weeks were an emotional roller-coaster. We had a second opinion done at USA women's and children high risk clinic in Mobile, AL (about an hour and a half from where I live) we had 3D ultrasounds done and it confirmed the Anencephaly. We had the remainder of the pregnancy with Dr visits there and locally.

About midway we had a scare with her, they thought she had a hole in her heart. We went home that night and prayed about it and next visit they couldn't find a thing wrong with her heart, it was prefect. We knew it was God who answered our prayers.

Phillip and I finally decided on her name Madilynn Anahera Brown. Anahera means "angel" in Maori which is the native people in new Zealand where I am originally from. I thought it fit just right.

Madilynn Anahera, baby with anencephaly

I had the perfect pregnancy other than the very frequent heartburn and occasional nausea. We had no other problems or birth defects going on and she was fighting up a storm for us. She was such an active baby, it always kept us laughing. We had constant support and prayers being sent our way. I couldn't of made it without God.

My Doctor and I both agreed when I was 36 weeks that we would schedule a c-section whichever day I wanted. Her due date was Dezember 5, 2012 and I wanted to go to 12.12.12. But we both settled with 12.5.12 at exactly 40 weeks. Those last few weeks were the longest, I honestly thought it would never get here but I really didn't mind because I was so scared of the "time" factor. "How much time" was constantly in my thoughts. Who would she look like? Would she have any covering? Would she have any hair? Would she have more brain development than the original only a brain stem?

On Wednesday December 5th, 2012 I entered MCH at 6 am. We got checked in and started my preps for my 8am surgery. My Doctors came in and our friends, family, photographer and doctor all stood around my bed and our Pastor gave one of the most powerful prayers I have ever seen and so glad to have ever been apart of. I knew that God was with us and I was going to be ok. Not really sure what time we went back to get started.

At 9.19 I heard the most beautiful cry. My Madilynn was crying.

I looked at Phillip and we both had huge smiles on our faces and tears in our eyes. They took her to get weighed, 6lbs even and 18 inches long. Finally they gave her to Phillip and he placed her next to me. So beautiful.

I never knew what it was like to look in the face of a baby and see a true angel.

Madilynn Anahera, baby with anencephaly

Blessed doesnt even begin to describe what it was like. I couldnt take my eyes off her. My darling girl. So so so precious.

I had about 30 more minutes left before my Doctor would be finished so I told Phillip to take her back to the room where our parents were impatienly waiting to see their sweet baby. I couldn't witness the few moments but from the pictures all I could see was love filling everyone's faces. Tears of joy that our sweet girl had came out fighting.

Finally I was back in the room, 2 hours had already gone by. Phillip walked to the bed side and the moment finally was here I could hold my sweet girl in my arms. It was a bitter sweet moment. Just sitting there listening to her breathe on my chest. She was cooing at me and I was in love. Beautiful jet black hair was showing under her hat and gorgeous blue eyes (later turned green) all ten fingers and toes. Chubby cheeks and thunder thighs.

All my siblings stood around me in awe, admiring this perfect angel. We were all so in love. Michelle was unsure at first but that's just the expected jealousy. She warmed up and have her kisses and then gave me a kiss.

Phillip and our nurse gave her a bath and then we moved on to our room. My family came in and we all took turns passing her around giving her kisses and cuddles. The next few hours just flew by and we had people in and out wanting to see our precious miracle. My doctor checked in often and was so amazed that she was fighting so hard. I posted pictures every hour that she was here and before we knew it 24 hours had passed.

Then 48 hours.

Madilynn Anahera, baby with anencephaly

Finally on Friday December 7th my doctor came in that morning and said we could go home with her. I was beyond happy. Never did I think we would be taking her home. My mom brought the carseat and we loaded up to head home. The hospital gave us a ton of bandages, gauze, tape and lube to change her head dressing.

She had more brain development than we originally thought. She had the majority of the bottom portion of the brain. She could feel, cry, move, hear and was so very ticklish. We tickled her feet all the time and she would tell at us. She didn't have any skin covering so it was all exposed.

The first night we couldn't sleep a wink. We would just lay there watching her. We kept a heated mattress pad on our bed (for our personal use during those cold winter nights) but it ended up coming in handy for her because she couldn't maintain her own body temp. We had to keep the heater on and a fire going so the house would stay warm for her. The days flew by.

We had our community constantly praying for her and many people ready to come see her. We were given a ton of gifts for her. Clothes, diapers, wipes. Beautiful things that alot of our friends and neighbors provided. Our Facebook friends sent tons of cards for support and love. It was so wonderful.

We got to attend church and we had her dedicated in front of our congregation. We had her dedicated in the hospital because we didn't think she would ever be able to go home or go to church with us. It was an amazing service and you could feel the power of God all over the place. Glory be to him always.

Madilynn Anahera, baby with anencephaly

As the days went on we continued to get concerned about her eating. I wanted to try the tube but was scared. We finally got a call around 5pm on the 16th from one of our local doctors saying there was a dr in Birmingham who was willing to see Madilynn. We packed our bags and drove the 3 and a half hours to get to the women's and infants center there. We headed to the NICU and a nurse met us with a smile and explained what they would do. We undressed her and she was placed under a heating lamp. They hooked up all the wires for the heartbeat and put the alarm bracelet on her for mandatory reasons (don't want any babies being taken out of their rooms). We met the doctor (and doctors in training) and got started on the tube. They started her on 40ccs which was alot considering she hadn't ever had that much so she threw it all up. We waited awhile and tried again. She took it well and then took the next dose well. Phillip and I were exhausted so we went down stairs to the rooms they provide for parents. We slept till 5am got up took showers and went to wake up my parents so they could sleep. Around 9am we went down to wake my parents up again to I get something to eat. The took showers and we put our stuff back in the cars. We headed over to the food court to grad a quick bite to eat.. it was getting close to 10:30 so I told Phillip to hurry up and we went back to the NICU. I just had an uneasy feeling that I needed to be in that room right now. We walked in and our nurse had just told us it was almost time for another feeding so I offered to pump some breast milk this time. I just got finished pumping and Madilynn let off a nice poop for us (she had several while we were there) Phillip changed her and then she started to throw up a little bit. I cleaned her off and then she started to have a seizure. She did this often while she was with us. She takes a deep breath and her whole body gets stiff (like a board) and then she doesn't breathe at all. It takes a few seconds but feels longer. We just calmly talk to her and move her arms to help her catch her breath again. She let out a huge gasp and then went right back into another one. I just knew in my heart this was the moment.

Madilynn Anahera, baby with anencephaly

I prayed to God many times throughout the journey that if she passed away it would be in my arms and I know now that it was him calling me back to the room so I would be there for those last moments.

Madilynn opened her eyes and looked around the room. She looked into each one of our faces. Like it was her way of remembering us and saying goodbye. She finally came back out of her spell and I picked her up and held her on my chest. Then another one came. I told the nurses to take everything off her and take the tube out. I put her head close to my heart. The first thing she heard and the last thing she heard.

At 11:51am our baby girl was called home. At that moment part of me left with her.

All I could do is hold her close and cry. Phillip held both of us and we just sat there with her empty body in our arms. I wasn't ready to let her go but God always knows what he is doing. Phillip called his parents to tell them the news and I informed everyone else.

Since we were in Birmingham we had to wait for a little while before we could leave. They took her to the morgue and placed her in a small white casket. We pulled our car around and they placed her in the back seat. I rode home the whole way in tears just wishing she was in my arms still. Her once warm body was now ice cold. She grew her wings.

Madilynn Anahera, baby with anencephaly

We called our family to come by and see her for one last time and then explained that she left to be with Jesus to Michelle(4). We had told her that she was going to be born with a booboo on her head and would have to go live in heaven.

The next morning we took her to the funeral home and discussed plans. We arranged a public wake and private graveside service.

For 10 days we were blessed beyond measure. God gave us a miracle baby but she was living on borrowed time.
On December 5th @9:19am Madilynn Anahera Brown was born, December 15th @11:51am she was called home.

I have no regrets and would do it all over again. The journey is so rewarding. This journey is impossible without God.

 

 

Learn more about Madilynn on her blog

 

 

 

 

 

 

Last updated January 16, 2013