July 5th, 2012
Today, An Angel was born. Kennedy Fallyn was born at 3:28pm weighting 5 pounds 13 ounces 21 inches. Special Heart and all. the perfect picture of an Angel. We spent all of 5 seconds together but SHE WAS MINE. I gave birth to her. She went Straight to NICU. A foreign part of the hospital, i knew it was there but never pictured ever being there. I never imagined walking though the doors, scrubbing up, walking to a curtained roomed, hearing sounds i never knew of. There she was, my baby girl, my hero in flesh and blood. the machines disappeared, the nurses disappeared, it was me her and her daddy. we spent hours with her.
July 8th 2012
We were discharged from the hospital. As we left I was wheeled out and as I passed mom's carrying their babies, I broke down.... I had to leave my baby in the hospital. We came home unpacked the car a bit, called places to get a pump. We finally found one. We went to get it and dinner......then.... the call.
The call my husband didn't want to discuss, but he knew I knew so he told me...... I lost it. I scream why my baby, of all the baby's why mine. I prayed so hard. I managed to make the important phone calls I need to make. I managed to post to Facebook. I managed to run up to be by my daughter's side. Remember I had just had her 3 days earlier, naturally... no pain meds in my system. But I made it. I wanted to hold her and tell her she could be strong to make it but instead I told her it was ok to not be strong. I had managed to make myself ok with the fact that I could possibly be loosing my daughter. I loved her so much but I knew this was out of mine, my husband or even the drs hands...... then we got news her heart had started after everything Kennedy came back. She was in critical condition but her heartbeat there. She was a fighter. At that moment I never wanted to leave EVER. I became very scared and never wanted to leave her side. Thankfully the nurses told us about the rooms down stairs. We stayed there. I took in every possible second with her. They placed her on an ECMO machine, a heart lung machine. There she remained for 4-5 days.
Big news on the Kennedy front, she started eating. Since being born she had iv fluids and iv nutrition. I pumped breast milk, and I was a cow. By today I was getting 4-6 Oz per pumping session every 2-3 hours. I was blessed with breastmilk.
Along with being able to get breastmilk, she got off a blood pressure medication, while still on ECMO. For Kennedy that was big. She was holding her own while still getting assistance from the ECMO.
I loved her smell, she smelt so sweet and like mine. I never understood that. I never understood that my child would smell so sweet and I would instantly now she was mine. She was hooked to sooo many machines. Ones for meds, ones for nutrition. Atleast 20. My little girl was hooked up and living off of machines, the life I didn't want for her. But she was fighting, fighting to regulate her tiny 5lb body. Her brain was trying to get used to a new heart, a mended heart. I had met mothers with other heart babies. And they were fighting too. I wasn't alone, I hadn't done this to my baby. My baby wasn't the only one who had a special heart. My child, that grew in my womb, was perfect. I nor her dad did this to her. They came in swarms, to love on me and give us support, they held my hand, they dried my tears, they calmed my fears. They reassured me that she could and would over come this no matter the outcome. They were HEART MOMS! They had there own club. I was apart of a group who knew my fears, not only as a new mom but as a new heart mom.
July 12th, 2012
Today, Oh Today! Today was a hard day for Kennedy and myself. I wanted so bad to hold her, to be a mom, to be a normal family. I wanted to do normal things. I wanted to hear my babies voice. I longed to see her face with no tubes or tape. Today was a bad day for Kennedy, she had trouble. I think for us it's hard to be special and not your normal first time parents.
With Kennedy if its not one thing its another.
Yeast infection...........in chest cavity & BLOOD!!!!!!
High oxygen stats.............90's when Dr's want it low 80's
3 Artieal lines...................1 wasnt good enough for her.
Yeast infection...........in chest cavity & BLOOD!!!!!!
High oxygen stats.............90's when Dr's want it low 80's
3 Artieal lines...................1 wasnt good enough for her.
Yes, me and her daddy are planning on her wanting to go to HARVARD. Any donations???
Our daughter is super stroung but SUPER stuborn, Hard headed and always stiving for the BEST SHE CAN DO!!!!!
Today she was supposed to get her chest closure, but her yeast culture came back positive. Why can't my baby have one thing go right for her. Why can't she just come home and be normal? Why can't I just hold her? Why can't I make her pain and struggles go away? I cry being close doors, I don't want her to see my pain because I know she feels my sadness. There's this struggle, fight going on within my faith and my heart. I'm angry at God for making her struggle to live when other just get to. I'm angry because I want her to just be what I had planned. I want God to let be her mother. I want to see my daughter's face without any tubes and tape. I want to see her chest, scar and all. I want to place bows on her head full of hair. I want to hear her cry, scream laugh..... but I had this feeling I have shoved down so far, that maybe just maybe, God's plan wasn't OUR PLAN!
July 23rd 2012
Today me and Michael decided that I would be a stay at home mom. We wanted kennedy to have the best care and full focus, and that's what we did. We knew it'd be tough but we needed to do it so someone could be with kennedy at all times. We didn't know what was in store but we were ready to face it full swing.
July 24th, 2012
Reality has set in. My 19 day old child, is sicker than we thought. Today, Oh Today I realized that kennedy has months left in the hospital. She has made leaps and bounds but, she is worse than the drs had planned. She did well but then the yeast infection and had hiccups with that. Reality is that her room won't be touch for months on end. Her clothes may never be used, diapers clean, bows never used.
Today, I felt a knot in my throat. I didnt receive a text from my husband until around 10am, i normally wake up to an update text from my hubby. It was my moms day off so we normally went to the hospital together, although she never went in, i knew it was hard for her. Grandparents are fun not serious and this wasnt her cup of tea. I get in the car, she asked if i had talked to mike, and i broke down. I knew, i just knew, they wanted to speak to us both. I get there, wait in the waiting room with my mom, who im sure saw the pain in my eyes, and knew i knew. Mike gets there, they call us back to a private room, the drs sit down,,,,,,and they get about one sentence out, that one sentence NO parent wants to hear....." Im sorry theres nothing more we can do for your daughter." I broke.... I literally remember my mom and husband picking me up and holding me. I remember calling my dad, and begging him to make it better. I remember calling my sister asking for strength. i remember trying to get the courage to go to her room and say my see you laters. i remember our familys first time seeing kennedy was their last time seeing her. I Remember watching the man i love, my rock, my support person, loose it. I remember the long embrace we shared as our daughters heart stopped beating. I remember the first time my baby brother saw his niece was the last and only memory he has of her. i remember thinking this cant be real, this is a cruel cruel joke. I remember taking our first and last family pictures. I remember wondering if id survive. I remember looking at my husband and asking if we'd be ok. i remember coming home to a neat and tidy nursery. I remember laying in bed cuddled up to my husband and just being there, with him, listening to his heart, thanking God i had him. Thanking God i had the one person who turly understood me, the situation. I remember not ever wanting that moment, the moment in the hospital, when " Theres nothing more we can do for your daughter.", I never wanted that moment to have ever happened. But Because it did, I got this one moment, the long embrace, the cuddle, the heartbeat.....THE MAN!
I got 22 wonderful days. Although I wanted more, weeks, months, years. I will embrace my 22 days. Yes its been 3 years but she was my daughter, my warrior, My Angel. I will embrace this path that i was chosen to walk. My daughter wot be forgotten, her name lives on. Although some people think i should be done greiving, I ask you this, which one of your kids would you let go, bury, say see you later and never see again. I gave birth to my Hero!
There is no one more day. There's no more one more medicine to memorize. There's no more let's go to the hospital, let's go up stairs, let's gather around her bed. There's NO MORE KENNEDY! As we prepare for a memorial service for our daughter, we can't help but look at each other and just cry inside tears. Your not supposed to bury your kid, your not supposed to know who preceded your CHILD! As I hold the hand of the only person who knows my feeling, I can't help but plan for our future. Cremation or burial? Where do you bury a child? How could I cremate my child? Flowers? Slide show? The decisions were easy for us. We just looked up at each other and knew. It was like God hand picked this man because we wouldn't have to talk in times like this we would just feel that feeling. We choose cremation, flowers, a celebration of life. We got everything we wanted for her. It was like a birthday party only the guest of honor wouldn't be attending. We spent the day planning our first and only child's FUNERAL! How does that happen? Who is to blame...is anyone to blame?
