Saturday, July 19, 2014

Adalynne Marcella's arrival

Tuesday July 8th I went in to Forsyth hospital to begin my induction process and to soften my cervix. I guess every woman decided to have their baby during this time so we had to wait for a few hours before we could even get a room. Finally around 5 ish they started my Pitocin and but it a balloon type thing to open my cervix, which was excruciating.  About 10 hours later and filling the balloon up more I was only dilated to a 5 when the balloon came out (sweet relief).  I was not dilating whatsoever so they continued to bump my Pitocin up higher and higher.  After about 24 hours of labor I threw the towel in and got the epidural, I really wanted to have an all-natural birth but my Pitocin was so high my contractions were too intense.  My first epidural slipped out too much and they had to do another one… yay the joy. Finally after almost 40 hours of labor I was finally to a 10, and was so scared all I could do was cry. I wasn’t ready for this, I wasn’t ready to start the process of losing her. I wanted her safe in my tummy and she wanted to stay there.  But regardless of what we wanted she had to come, I had to see her face.  I only pushed for 30-40 minutes and then.. she was here in this cold world.  Purple. Dark purple and not breathing. No crying, nothing, just a limp purple baby. I screamed “there’s my baby!” only to see the doctor look over at the nurse and shake his head.  I took her on my chest and kept asking if she was going to die and they looked and me and would say things like she has a pulse but she is not breathing.  All through my pregnancy I would sing John Legends “All Of Me” to her, it was my way of telling her that no matter what I would love her with everything I had. No matter what crazy ride she had in store for me I would give it my all as long as she gave me her all. We would fight, together. So naturally I started singing our song and rocking her, over and over again.  Finally I saw her tiny little chest lift and fall, and then after 10 or more minutes of me horribly singing a cappella to my limp purple baby she cooed with me to the song. My. Heart. Sank. There she was, I knew we could do it. Finally she started to turn pink and I stopped crying.  I did it. We did it. Or so we thought.  We brought my family that was already there in to see her naturally everyone was crying and in awe of my beautiful creation.  A little after her arrival my dad left to go get my brothers, the new uncles of a beautiful 7lb 13oz 20 inch long baby girl born July 10th at 11:33am Adalynne started having trouble breathing.  She kept gasping and just could not get the hang of breathing. For those that will ask why they didn’t put her on a monitor or ventilator, I chose comfort care for my child. No invasive procedures that can cause her any pain are to be done. I want her short time her comfortable and full of love. After two frantic calls to my father and jay who left to get his car for work in the morning  to hurry and get to the hospital as soon as possible since the doctors were telling me she would not survive very long. We had our whole crew in one room gazing at my baby as she struggled for each breath.  My amazing delivery nurse contacted an organization called Now I Lay Me Down To Sleep. It’s full of volunteer professional photographers who come and capture pictures of terminal babies or still borns for families to have.  A wonderful photographer named Deborah came and took pictures of my warrior and all of us. (thank you if you ever read this, my heart cannot even fathom the words of appreciation) Well my warrior fought like we do and with a little help from some morphine calmed down enough to learn how to breathe. She continued to do well except for seizures that stopped her breathing but we got to go home!! Once we got home she has been doing well, has days where she will stop breathing and with some stimulation will start back up also has tremors.  If she gets too cold or has too much stimulation her episodes start.  My heart aches knowing that one day I may not catch it in time to get her going but I try to let it go.  Knowing you’re going to lose your child is the hardest thing I have ever faced in my life.  Even though she is doing okay most days I know eventually the hope runs out, she is missing over a third of her brain. She amazes me with her funny faces and fight. She still doesn’t cry, just opens her mouth and sticks her tongue out when she gets hungry (cutest thing ever.) I still sing her our song every day, and I always will.  Having her here is the hardest reality check seeing her beautiful perfect face and knowing I only get a small time to enjoy it makes me want to spend every second wrapped in her, and I will until I don’t have her any more. I want to say the biggest thank you to our family that came up to see her from near and far to help for a few days, biggest blessing ever I you all so much.  Sorry for the late long post, like I said every second I have is spent wrapped up with my warrior baby. Love to you all beautiful souls thank you for the thoughts, prayers, and strength being sent our way. 













Saturday, July 5, 2014

Yesterday was July 4th!! We had such a fun day and Jay took some amazing photos I've been wanting to do.  Besides for enjoying burgers and my personal favorite, watermelon we went and saw some fireworks.  Once we came home Jay and my brother Dalton took roman candles and had a Harry Potter duel in the front yard yelling various spells as each spark flew out from the "candle."  Typical. : ) Besides for our 4th photoshoot we have done a few others that are finally ready to be shared.  Oh and since today is my due date I did a "due date" picture for funsies sharing my love of baking. Probably the next post will be during labor or after I have my sweet little warrior.  Hope you all have an amazing night. Love to you all. 
















July 5th Due Date!

Thursday, July 3, 2014

Hello my beautiful readers,
Today I realized a few things, first of which I haven’t posted on here in over a month.  Sorry, I’ve been super busy getting everything ready, between having my baby shower to finishing the work at the house any free time I have is spent laying in bed watching Castle on dvd.  Another thing I realized is the anniversary of my car accident was the 29th of June and it like these past few weeks flew by me.  I realized as I was getting ready for my ob apt today that the 4th was tomorrow and I had a flashback to sitting in a wheelchair with my mom standing next to me watching the fireworks in the intensive care hallway of Brenner’s hospital just four years ago.  I looked in the mirror and it hit me.  Damn woman you are pretty strong.  There I was four years ago with a broken elbow, 6 broken teeth, a severe concussion, my right arm shredded to the bone and my jaw broken in two places but I knew then, everything was going to be just fine.  I was going to be okay not just okay but I was determined to come out stronger.  And I did, I just didn't know it. After suffering from I would say a bit of PTSD I just didn't know if I was that strong woman I hoped to be.  But here I am, four years later and I know I am.  I probably have never been more sure of myself till this morning.  I am facing every single parent’s worst nightmare, the unthinkable, unimaginable disaster of losing your precious child.  And even though I have days were I sit on my old friends back porch and cry hysterically at how scared I am, I am okay. I will survive this, we will survive, always do.  I have learned its okay to break down and not be strong every second of the day.  Those moments are human, I am a human. A 22 year old scared human trying to figure out how to make this “big bowl of shit” into some type of positivity.  I know that I will not have my beautiful little warrior for long but if that small time her life is comfortable and absolutely full of love then what an amazing life she will have.  Life is short, some even shorter than others but how you spend your life is what matters.  And after she has left my arms we have decided to send what we can to other babies who need things to ensure they might have a better chance at life.  We get this amazing opportunity to love and give love and that makes my heart and I feel her heart so incredibly happy.  I learned today with my July 5th due date suddenly approaching if I do not go into labor by Tuesday I will go in to start the induction process.  So in 5 to 6 short days my beautiful little warrior will be in my arms. I get to see her face finally, every ultrasound I’ve had she has had her face covered by a hand or foot and I’ve had A LOT of ultrasounds.  Always proving she is in charge and stubborn…….hmmm I wonder where she might get that from… hehe.  Now its time to lay down and relax for a bit during this storm. Hope you all have a safe wonderful 4th of July as we celebrate ‘MERICA love to you all beautiful people

Some photos from the shower, I will post some more tomorrow after I do a fun little shoot : )








Wednesday, May 28, 2014

A little bit of happiness

Hello my dear readers, like I said in the last post I wanted to have this one be happy. With all this news and everything going on with this pregnancy its hard sometimes to find the happiness in the situation. Nonetheless I choose to be happy, yes I still get sad almost once a day and allow myself that small time to be sad for the time and move on.  I have to choose happiness or... I wont survive. I'm tired of crying, of feeling anger or hurt.  My heart cant take it anymore, it's time for some happiness again.  So what makes me happy? Well at this point in my pregnancy it's...watermelon. ohmylanta I love the stuff can't eat enough, sad I don't have any right now BUT I will be going grocery shopping later and it's literally the first thing on my list. Food is finally enjoyable again on most days which is a huge relief, being sick everyday is uh.. no fun I tell you. The biggest thing in my life that brings happiness back to my soul is my family. Any of you that know me personally know that I am a HUGE family person. Family first, always. My parents and brothers are my rays of sunshine on these ever cloudy days. They keep me going, even if its a going rate of yelling because teenage boys don't listen to anyone but, at least I'm going.  My littlest brother has to be the best human on this plant, he doesn't know everything that is going on because he is too young but always keeps me laughing.  The other day he told me "I am not applying for this uncle job because I do not want to change diapers" haha sorry bud there isn't really an application process for this type of job.  Children are the biggest rays of sunshine I swear. 
In other fun and happy news I have FINALLY found the perfect name.  I have been searching and searching for just the right one and I have finally came up with it............ Adalynne Marcella.  Before I go any further I want to give some background into this perfectly perfect name.  Lynne is mine and my moms middle name so it's really special to me.  The translation of her name means noble beautiful young warrior, like I said perfect.  My little warrior now has a warrior name and there is nothing that makes me more happy than that.  I took some photos to announce her name which you will see below and a few others for fun. Its time to get ready for my baby shower that my job is throwing me, finally a chance to celebrate this instead of the continuous gloomy doctors appointments I struggle through. Love to you all, have a beautifully happy day! 
Thank you Marco <3




Friday, May 16, 2014

Game Changer

Let me start this post out by if you are in area where its not acceptable to start crying close this and open it at another time. Going into yesterday I was thinking of how much more information I would have to share with everyone and how many of my questions would be answered, boy was I dead wrong. I first met with a pediatric cardiologist to do and in depth ultrasound of my little warrior baby's heart, which went great!  Her heart looks wonderful so we started the day with very positive news.  After some food and a much needed trip to Starbucks with mom where we got birthday cake pops- any of you know me know ohhh how much I love these things. If you haven't tried them, do it!  So good, even better for a preggy prepping herself for a very hard doctors appointment.
 May 15th, the day I had been waiting for, the big meeting with the pediatric neurosurgeon to discuss warrior baby's surgery after birth.  Whelp, WHAM POW did he change the game.  My daughter has a SEVERE case of ventricular meglimy, to the point it has a new name, Hydranencephaly. This is "a rare condition in which the brain's cerebral hemispheres are absent and replaced by sacs filled with cerebrospinal fluid." Now, for those us you who do not understand these doctor big words I shall break it down for you.  She is missing part of her brain, the top part which controls motor function, speech, all upper level functioning.  She will never be able to talk walk or my biggest fear from the beginning, dance.  I've said from the start I can deal with the mental slowness, the seizures, everything but please, please allow my warrior to feel the joy that dancing brings to me. To express your soul when your voice is so clenched that music and movement are like the crack in a dam finally busting that free. But no, he looked me in the face and said "No your daughter will never dance." As most of you can imagine hearing the utter shock of this news I began hysterically crying, and thank god for my mom.  Who; before I go any further into the "big bowl of shit" as my dad described the situation in the very beginning, stood up held me and began to ask the questions I couldn't think to ask between sobbing tears and uttering I don't understand, I'm so confused.  My mother is my lifesaver. I type those words and have that little voice reading them in my head and know that doesn't even cut it in explaining her.  I seriously could not even do this without her at every single doctors appointment, looking at every single doctor as they give me more WHAM POW blows to my everfadding heart and hold on life and asks them all the questions I cant word because well, I just cry.  Mom, I know at some point you will bring yourself to read this so thank you, thank you so much for being the strong mom that I hope I get to be one day, short period it will be but, one day I will. Without you, I would be curled in a corner unable to speak to the outside world.  You are forever my biggest hero.  Now that I am again crying I will continue with my information for all the questions people have asked. Children with this rare disease for the most part don't live past a year, they often have trouble feeding which obviously lessens their chances and will have to have a feeding tube put in. I know what most of you will say to me- hunny, miracles happen and doctors can be wrong, well I'm here to tell you that I know looking at their face how shitty it really is. The word severe has been used more in the past few months then I think I've ever heard in my 22 years.  Plus, I saw it on that tiny little moving picture of a MRI (after he showed me the blobs were actual parts of baby) there was her brain lower parts there and looked normal but... the top was a white fluid filled space.  He said that my normal ob probably could not tell everything because they don't spend their time looking at little warriors heads on MRI's like he does which could of been why there was confusion.  I was first told that her brain was normal, even asked if she could walk and they said yes, hence the WAM POW shocker to my heart and soul.
Next step- ha here's the kicker, nothing. We wait... until she is born and then do an MRI (which should be a blast since she lovedd the first one so much she felt like she was trying to escape my tummy) and then asses whether to put a shunt in or remove a part that makes the fluid or send her home and monitor her until she, I guess has issues.  I'm not entirely sure what the future will hold but I do know that she will basically stay as an infant for the duration of her life, and that I will love her for the short time I have her. Also, I will try my very hardest to learn some type of lesson from this "big bowl of shit." Whew, okay must. stop. crying. cant. see. screen.
Thank you all for the support and love you have shown me, I was so scared to share this news from the start because I know how people are in our little small town. So, thank you for reminding me that I have a indescribable amount of people who love me and care about me.  We get so caught up in our lives we sometimes forget. Love and happiness to all hopefully the next post will be a wee bit more happy. (I'll talk about food or something fun)

Friday, May 9, 2014

Big news..

So, its time I finally share my news with the rest of the world. I'm pregnant with a little baby girl! She is due July 5th 2014 and I am very excited and overwhelmed.  I first found out around 23 weeks which for those who don't know week terms that's about 5 months.  But, her first ultrasound showed something was not quite right with her brain so I had to go a different doctor to have a second level ultrasound.  The results.. showed she has something called ventricular meglimy, when she is born it will be termed hydrocephalus.  It basically means that she has extra water on her brain, but in her case it's very severe and on both side ventricles of her brain.  I had an amniocentesis (needle inserted through my tummy into the placenta to get fluid for testing) and an MRI to try to figure out why she could have this, neither gave a definitive answer but ruled out other birth defects such as down syndrome or spina bifida.  The doctors believe she has a blockage in one of the ventricles in her brain causing a back flow to the side ventricles and it's just a freak thing that happens in rare cases.  Once she is born she will have brain surgery 1 to 3 days after she is born to put a shunt in to relive the water and drain it into her abdominal cavity.  Unfortunately, the damage being done to her brain in my belly may not be able to be reversed.  I've been told she will most likely have severe mental retardation and possible seizures once she is born.  This has been a very over whelming past few months with getting all this news and trying to decide what is best for me and her once she arrives.  I chose to wait for so long to tell everyone until I was completely ready and able to handle all the questions that will be thrown my way.  I will continue to use this site as a way to keep everyone updated on the information I receive on my little warrior baby.  I hope you all have a beautiful day.

It's a Girl! Coming in July
31 weeks
30 weeks

Her first ultrasound around 23 weeks
Left and middle is second ultrasound around 26 weeks
Right is from the first set