EmmaleeGRACE: Out & About, praise Him...

EmmaleeGRACE: Out & About, praise :Him: "The night before surgery we were briefed on all the things we could and could not do as well as what needed to be done by a Miami Children ..."

Out & About, praise :Him

The night before surgery we were briefed on all the things we could and could not do as well as what needed to be done by a Miami Children Hospital(MCH) nurse. Our surgery felt as if we were waiting for a flight to come in. The original time was changed from 6:00am wake up for an arrival @ 9:30am (operation) to now arriving @ terminal O @ 10:30am for operation to start at 12:30pm. Honestly, we were so nervous that we lost track of the "flight" and almost missed it. We arrived @ approximately 11:00am and were asked to wait till 12:00 downstairs, when we were finally allowed clearance to go upstairs to pre-op. We walked in and a nurse immediately directed us to POD 2 where they roled in a rather rigid jail like crib for Emmalee and two chairs for Mama and Papa. Unfortunately, big sister Ashley had to stay outside with grandmama. To our surprise my Dad showed up (in his white walking shoes, black beige and red plaid shirt, carrying along with him his blue and white spiral umbrella) for some serious father-son spiritual and moral support. I was happy to see him, but He to needed to wait outside.
As the clock was running and crunch time was nearing, we met quickly with the anesthesiologist, that was going to be taking care of our baby girl. He seemed very nice and approachable. Oops, I forgot to mention that the night before MCH sends you and EMMI video code so you can watch and learn about the certain medical issue, problem and or questions you may have based on the surgical procedure your child is having (I must say it was excellent and very well done). We then shared our 5 concerns with him. 1) Big sister Ashley just got sick and we wanted to make sure Emmalee was not coming down with it. If she could get medical clearance before going any further. 2) Very important was her 1p36 condition and what that all means. 3) Because of her pre-mee status we mentioned also her developmental delay causing Reflux and swallowing problems. 4) Moms bad history to epidural and 5) baby Emmalee's pulminary stenosis due to the VSD's and her Ebstien anomaly diagnosis.

After this encounter the great God sent Dr. BurnWeite came in to give us the ho-down once again as to what procedure she was going to be preforming on Emmalee making sure that it be as small a cut as possible as well as making sure that all that needs to be corrected is. Great. Now I knew the time was approaching my mom had just come in for a second to ask a question and stayed, but now it was my time. I asked shirley and my mom to please step outside so I can have some serious father and baby daughter time. The tears flowed as I prayed for her and over her for God to keep her in His hands and take care of her always, especially right now. Emmalee and I worshiped together for a while and then I walked her through the whole process of what was going to be done to her from point A -Z. That was truly a challenge, not for her but for me just thinking about it and visualize our tiny little Emmalee Grace under the hands of those that simply consider her a patient until I remembered who provided those hands and who was orchestrating this concerto. It was none other that the master composer himself, God. What a relief that brought to my soul (spirit man) and heart (humanity).

It was now time. Mama, broke down as a complete stranger rolled away our little princess. We walked out, composed ourselves and were escorted to the waiting room. We were now surrounded by families and individuals that are or could be experiencing the same thoughts, feeling and concerns as us. Time passed and I could not take my eyes off the board. I saw as it switched on to "PT. in Surgical room 003" (this was our Emmalee). I got both excited and very anxious at the same time. Excited, because I new that she was in good hands and the procedure was going to get done. Anxious, because of the feeling impotence not being able to hold her hand and whispering to her "that everything was going to be okay, daddy and mommy are here".

Blink-Blink the status was changed, "Surgery start time". Here we GO! Needless to say prayer and intercession was at the top of our list for the next 1 1/2 hours. Finally, blinked the screen "Pt. Out of Surgery 2:24pm". Silence struck. the urge to go and find my daughter was pulsing through my veins, but all I could do is sit and wait...sit and wait. When suddenly my wife gets up and has the sudden urge to go to the bathroom and guess who she runs into, Dr. Burn Weite. she had just finished with the baby and everything had come out perfect. She explained what she found and how she took care of it. Shirley, then in awe attempted to explain the details to me, but it was impossible. I froze after she said everything was fine and Emmalee is Ok. I did not and could not hear anything else after those precious words were spoken. A few minutes later they gave us the opportunity to see her. She was rolled up in a snow white blanket sleeping peacefully. Both Mama and I took a moment to touch Emmalee and bless her. Emmalee looked beautiful and comfortable under the much needed influence of morphine.

An hour or less later they called the Emmalee Grace Contreras family out and walked us down the hall with her to the very familiar of CICU. This is where we were welcomed by some old loving faces as well as some fresh new ones. She will be hospitalized for the next 5 days for supervision.

Emmalee Grace is now out and about drinking pedia-lite and today just started drinking milk. Mama was able to carry her and put her to sleep in her arms. Hurray to God be the glory. Our greatest concerns now are her congestion. It looks like big sister Ashley may have gotten to close and her BP. Her blood pressure is a little to high. Dr's say it could be due to the pain and or medication she is currently on and believe that that to should subside.

Thanks again for your time and life. Keep us in your prayers always. We need it.

Blessing,

the Contreras family

Humbled by His Might, Floored by His Mercy & Awed by His Grace

Sunday was amazingly stressful. The getting ready, running from place to place and making sure that we had all are t's crossed and i's dotted. It was time for Emmalee's presentation before God, family, friends and the congregation (FdF). Having participated in many of these in the past I was caught off guard when asked to give a personal testimony as to our story and the miracles their of. Quickly, being a type a personality I went to the back and prepared a four point outline just to make sure I did not miss a step. Truth be told, once on stage God took control and allowed what needed to be spoken to flow off my lips and into the hearts of our congregation and invited guest. In my broken spanish, fluent spanglish and perfect english I spoke the words that God had placed in my heart.

Humbly, I started by recognizing His Glory, Power and Might and acknowledging two of the greatest lessons/words I have learned in my walk with Him, MERCY & GRACE. God's is awesome. Watching the face and hearts of the audience moved by His presence and power through the midst of our process. I shared about the unexpected starting line of our marathon (at 24 weeks of pregnancy) and walked them through the tsunami of stress, fear, conflict and anxiety (1/3 of the way at 35/38 weeks of an emergency c-section) pushing us forward into what I pray would be our half way point (birth till today). This portion included all the good, the bad and the ugly of this season.

I then concluded with two mind blowing statements that were shared with us through a face book comment and the other that floored me by one of my mentor's. The first was a qoute that this individual had once heard and it states, "Special children are given to special poeple" and the second, was phrased as a question "Why not me?" both of this have caused an amazing amount ripples in our thoughts and feeling that I will attempt to share with you in the near future.

Thank you for your prayers, ears, hearts and lives.

The Contreras family (Daddy)

Daddy's little girl

The day is soon arriving where our youngest Emmalee Grace will be entering the operating room for surgery. It seems the the umbilical cord did not disconnect itself correctly once she came out of the womb causing a tiny sac to develop under her belly button. In addition to that her belly button did not seal completely, so every once and a while she will have some puss and blood discharge.

I share this information with all of you for three reasons. The first is to keep you updated as to what is going on in Princes Emma's life. The second is so you may have the specifics in order for your prayers to be lifted up for her and for us in our time of need for strength, hope, courage, support and faith. The third reason for my writing is quite selfish but necessary. It is so that I to can air out, express myself and put my deepest heart felt feelings, thoughts and emotions on paper. In other words, I am using it as a much needed therapeutic tool for my emotional, physical and spiritual well being. I must confess that it has help both me and my wife out greatly to be able to share openly and freely our experiences with baby Emmalee.

I would like to thank all of you that have commented on our blog and facebook. We appreciate it very much and need to hear those uplifting words of affirmation, exhortation and compassion. We ask that you please keep us continuously in your prayers. My wife and I are working on a prayer list that will be posted soon, so please keep an eye out for it.

Your probably asking yourself: Where are all these touchy feely things that Pg was talking about? Well my friends, here they are. My human nature is exhausted. This week alone I have been staying up till 3am in the morning in order to feed Emmalee and not risk staying asleep and skipping her grub (The Doctors are constantly emphasizing the importance of her weight gain, so I want to make sure that she does not miss a feed on my watch). Right now I am thinking the heavier the better for Emma. Once I am done feeding and burping, its time to put her to sleep . Once that is done (around 4am) I am ready to go to bed to wake up at 7am in order to get Ashley up and prepared for school. I figure I may sleep a good 4 hrs a day (Not good at All). I have also chosen to take this shift so that my wife can get some rest. In her nature she is an activist always trying to help or truly just needing to do something in order for her to feel productive (trust me between Ashley, Emmalee and I we give her more than enough to do). Just recently she has been suffering from vertigo and severe back pain and it is all rooted in what I call the "GINORMOUS " amount of constant stress she has been under since the 24th week of pregnancy. It breaks my heart to see her this way. I pray everyday that our God above give me/us the strength to continue forward. Oops, I almost forgot our other blessing, ASHLEY. She is a 5 year old big sister that unequivocally loves her sister with a passion and can't wait for her to start sitting up, laughing and walking so she can dress her, take her to the park and play beauty salon with her. What a blessing it is to have Ashley around, but how difficult it is sometimes to explain to her what it means for Emmalee (her cosita linda) to have special needs. I must say that at times while I am driving to a counseling session with a client or on my way to go preach I start to compare or create a parallel between where Emmalee is up to developmentally at 7 months (really four months because she is a premie) and how and what Ashley was doing at that age. It is hard to swallow the gigantic differences in their growth process. It is also hurtful for me to see some of my close friends with their 7 month olds and all the different things they are capable of doing verses were Emmalee Grace and her limitations. Oh boy.... What a lulu!

Well friends, "that's my spiel and I am stick'n to it"

The Contreras Family (Daddy)

"The Sun Shines After The Rain"

Emmalee Grace had a doctors appointment today in order to get her shots. Ouch! Thank God, it went pretty well even though she cried alot and later calmed down in mommy's arms. According to the growth chart, the pediatrician informed us that she is doing very well. She is thriving as a normal baby where length, weight & other developmental measurements are concerned.

Emmalee now goes to PT & OT (therapy) 4 times a week. We have seen alot of improvement. Little by little she is showing more strength and better forms of communication through eye contact, physical touch & her new found voice. We are very proud of her, she has been trying to sit up for 10 to 15 seconds and lays back down to rest. She is very consistent, acitve & tries to sit several times. What a champ! She also started to eat baby food & her appetite has increased. Yeah!!

My family and I are very grateful for the amazing doctors & experienced specialist that God has placed in our daughter's life. They are and have been of great help & support.

"Wait on the Lord; be of good courage, and He shall strengthen your heart. "

The Contreras Family

EmmaleeGrace is 7 Month's Today

Today has been a very gloomy day for me. As I sit in front of the computer to research the 1p36 deletion syndrome, my heart sinks into my chest. When I read & see the stories and pictures of these precious children and what their families are going through, it breaks my heart. It's not easy being a parent of a child with special needs. The more & more I read about the 1p36 deletion syndrome the more I wish their were a cure. It devistates to know that I don't have the power to heal my daughter.

Our journey, though clueless as to what tomorrow may bring, I choose to embrace today and live it to the fullest. Through this process I have attempted to control all external influences (i.e. people, places and things) that surround Emmalee. I am controlling everything on the the outside of Emmalee because I cannot control her insides (hence the 1p36). I feel so impotent and I find myself constantly fighting off my sadness, frustration and anxiety. Help me Lord!

In addition, I feel my husband sometimes draws away from what we are living by getting involved in other things (i.e. work, graphics and counseling) to distract himself and or to stay focused and sane. On the other hand, Ashley our oldest daughter (now 5) has been very demanding and needy, requesting and desiring constant attention. Who can blame her. I see how easily we forget that she to has been affected by the changes that we are all living. Ashley desires so much to just play, hug and squeeze her little sister. You can see the frustration in her eyes and how her relationship with Emmalee is being castrated and her sharing as a big sister is limited.

I hope & pray for healing in Emmalee's life and that God continues to give me & my husband the wisdom & strength that we need on a day to day basis to be able to walk this new adventure, to surpass the obstacles and conquer the challenges that are before us.

Blessings,

The Contreras Family

Ps. Our deepest desire right now is to connect with other families affected by the 1p36 deletion syndrome in order to establish a support group in Miami.