Ella :)

So my miracle baby's 3rd birthday is in 2 weeks. This is a bittersweet time for me and my family. We start to remember all the rough patches and worries that Ella went through during the 1st year of her life.


When i first saw her, i cried. I cried for her. I couldnt help but feel hopeless for her. She had no fault in life, there was nothing this precious baby did to deserve a face like that. She was my heart, my life and my world. I didnt see her for 8 hrs after birth because of the extensive testing they had to do. I couldnt sleep, rest or think the whole time. I finally got to hold her at night. To see this gorgeous little angel was too much to handle. She was sooooo small and puffy lol. She had a full set of hair that i unthinkly put in a little cute mohawk. All she wanted to do was sleep. I sat there in the NICU and cried. The nurses kept telling me how beautiful she was, and i couldnt do nothing but nod my head. I was sooooo stressed and exhausted that my body gave in and started trembing, and  i had to escorted to my room. She was kept there in the NICU for 4 weeks due to complications with feeding and they were forced to place a gtube in her little tummy to help her eat. Her cleft palate was so bad, she couldnt swallow or eat with it going into her lungs. After this, i was allowed to take her home. I wasnt educated in ANYTHING tube feeding or nursing care, but i was ready to have my final piece of my puzzle home.

Weeks went by and Ella got very sick.When she was 2 months old,  we found her in her crib barely breathing. She was gray and dying. We rushed her to the ER and she was admitted. After xrays and doctors, she had double leumonia and 2 collapsed lungs. This was the day i found out about all her other defects. Her heart had a hole, her lungs were deformed ( one side was smaller then the other), she only had 1 kidney, she has a condition on her eyes called nygstagmis, her pitutary glands were missing...everything. I tried to get her daddy back from Afghanistan but apparently war was more important then a dying baby. I had to fight the hospital to write a letter to the army to get him home. No one was on my side. He finally made it back, a couple of days before she was released home. He couldnt hold her, he was too afraid to hurt her. It was a long road from him.

When she got home, she was always sick. I had nurses coming in and out of my apt. It was always something new with her. It was sad.

Every 2 weeks, her lungs would collapse and Ella lived on the 6th floor of that hospital. No plastic surgeon would touch her face because of all her failures to thrive. Usually they fix cleft babies 10 weeks after birth. No luck with Ella....No luck at all.

They decided that a surgery in her tummy could help the fluids from going in her lungs, as this was the cause of her collapses. That and along with her chronic lung disease ( 1 lung was half the size of the other). She had the surgery and that was a failure because she still had the reflex.

We moved to Fort Sam Houston, weeks after that surgery and Ella was still very sick. It was sad to see her, just sitting there, she wouldnt move, sit up, crawl, and couldnt even pick up her head on her own. We started to see a group of amazing therapists. They were like angels that came to us. They listened to me cry and hear what i wanted ella to do in the coming months. Things like sitting up, crawling, eating...all the simple things parents take for granted. they promised me that everything would be ok and they would help Ella.

We also started to see the best doctors the army could provide. these people made things possible that corpus never promised. She was set up with a plastic surgeon that promised surgery 2 months before her 1st birthday. It was like Christmas morning. I was terrified but happy that things we gonna get rolling.

They finally did her face and theyve had a couple misses and hits but ella is happy. She started to live. She went from laying down all day, to playing, and sitting up on her own. She was a happy baby. This was a turning point for us.

She started to get better. Yes, she is still very sick. She has more serious problems with her growth hormones, which require a shot every night. She is missing 3 of the 4 major glands that sit in the middle of her brain. The 4th one we wont find out till or if she starts puberty. There is a major chance that since the other 3 are missing...so is the 4th. She is expected to not grow more then 3 feet tall. Which is not a huge deal cause we are hispanic and we arent tall lol. She is still feed through a G-tube. Its a tube that goes straight into the tummy and delivers all her food. She can eat through her mouth, but not enough to get all the nutrients she needs. So she is expected to depend on the tube for a good while.

Her palate is still open. Since She had a very rare form of the cleft, her mouth is missing a major bone in the front of the face. This is where the 4 front teeth go. She will never have that. She wears a false palate that looks like a denture that covers the top of mouth. They will not fix that till she is older so her face can grow and have more bone to work with.  We have issues with her face. Its closing in which is bad. Her face can collapse and she restrict her airway. This was cause major face reconstruction surgery. This is a worst case scenerio. To prevent her cleft from caving in anymore, Ella is required to wear this false palate 24 hr a day. We have to take it out twice a day and clean it out. Since this is all open in her mouth, she is also required to have tubes in her ears, since cleft babies are at a high risk of getting ear infections. She also has sinus issues since her face is not closed up like a normal child and drips straight into her mouth.

 It still tears me up to look at her walking, talking, giving us attitude lol. She is the joy of the family. her brothers and sister adore her. they give in to her every need. Its pure love.Ella is the smartest little girl you will ever met. She has accomplished so much that she amazes all her doctors and therapists. she is truly a miracle baby and a princess.

Looking down the road, i hope that she has happiness. I hope that she sees the joy in everyday life. I hope that she looks at herself everyday and knows shes beautiful. I hope that she never gives up and shows the world how strong she is. I hope one day she looks at this, and sees that she was loved, that alot of people prayed for her. I hope one day she knows that mommy and daddy never gave up. We did everything god gave us to save her, to keep her happy,and to keep her strong.

I love you Erawyn Jizelle, for God blessed me alittle more the day i gave birth to you..........