Home Sweet Home

We are home! Ana is doing great. We have to go back Friday for more labs, her liver enzymes are still high. If you could keep praying about this we would appreciate it. They were hoping these levels would have come down, but they are still very high. I will update again after Fridays appointment.

Doing better!

Scattered thoughts about today...

• She is feeling nauseated on and off, but doing well. Her feeds were started back at 10cc's an hour and she tolerated them with I.V. Zofran... now the real test begins... she is at 30cc's per hour and not on Zofran! Praying she tolerates them all night and can get up to her 55cc's per hour by tomorrow afternoon!
• As for her heart rate, it seems to be more normal at the moment. It has been back and forth between normal and low all day. I think the plan is to talk with cardiology and get their expert opinion tomorrow... in the meantime we wait and focus on feeds. 
• This morning they thought she might have pneumonia because of crackles in the lower lobes of her lungs, but that has since been ruled out. 

Not the best day...

There you go! That's all I have for now. Please keep praying! God is listening! We have been blessed with the nursing staff... He even knew we needed the encouragement of a familiar face! A fellow believer to watch over Ana all night! How great He is!!!

Sore little hands and finger tips.

Sage loves eating at the hospital... is that weird? She asks to go out to eat at the hospital... lol.

Quick Update

    It has been a long time since we have found ourselves here... in this hospital... with these nurses... sleep deprived... and searching for answers. Ana got to a point yesterday where she could no longer tolerate her tube feeds or medications. What to do... what to do... Call the doctor.
    After several phone calls to different doctors on her team and attempting meds to stop the retching episodes... we all decided the ER was the best option. We arrived here around 9:20pm and waited... and waited... she was triaged around 10:50pm and taken straight back for a work-up. The retching and lack of feeds seemed to take a back seat to her heart rate. Ana's heart rate is abnormally low. Not sure why, yet. Labs are being drawn... tests are being performed... and doctors are trying to figure it out. Along with the retching she is feeling shaky and light headed.
    That is it for our update. No real answers just yet. Time for some prayers... pray that they would finally find the underlying reason for her light headed/shaky spells... pray it will be treatable... pray for her to tolerate feeds soon. I will update throughout the day as I know more.
(Excuse any typos... I went to bed at 4:40am and woke up at 7:30am.)

Pray...

    We need your prayers! Ana's big brother is very sick and if Ana were to catch it she would surely be admitted. Please pray for a hedge of protection around her while he is sick. 

    Now for a quick update... Ana is having some issues with how she is feeling. She blacked out last month and continues to have off and on complaints of feeling "shaky inside her body," she is also having frequent complaints about her legs hurting and feeling "weird." I have emailed her doctors and will let everyone know what the plan of action will be. 

    Now I must go tend to my sick boy and teach my girls. Thank you for your continued prayers and support!

Ana's arm is healed and back to normal!

A Song, Really?

    Have you ever heard a song that stopped you in your tracks? Made you think... that's my life he's singing about... how does he know what I went through and am going through? God is capable of bringing us comfort in ways we never could imagine. 

    The song you hear playing is a song I heard a year or so ago that stopped me in my tracks. I was amazed at the lyrics... thankful for them... for a song that gives comfort to me and others going through similar situations. 

    When I listen to the lyrics I have flashbacks of my pregnancy with Ana. The ultrasound that "proved" her imminent death. The three doctors being called into the room to verify the results. The ultrasound technician cleaning the warm gel off my belly and asking me to go wait in the waiting room... I didn't know what to think... what to say... why they were all concerned. I wasn't a christian at the time... I had no idea that Jesus Christ died for ALL of my sins... I had no idea that there was nothing I could do to earn my room in that mansion in heaven. I was hopeless... scared... insecure... 

    Then my name was called and I was taken to a small office with a desk and three chairs. I sat in one... a lady came in and introduced herself as a genetic counselor and sat in the chair at the desk... the other chair remained empty... I was alone... or so I thought. You see, God was there... waiting to protect His unborn baby... waiting to work in Ana's life before we ever knew her. The genetic counselor recommended a couple more test to confirm the results of the ultrasound... a blood test and an amniocentesis... I consented to the blood test and for some unknown reason at the time (I now know God orchestrated this...) declined the amnio... she then said that if the results confirmed the thought diagnosis, Cytomegalovirus, termination of the pregnancy would be the best option. The whole interview took my breath away... how could this be happening... the blood was drawn and I was sent home with a follow-up appointment the next week. 

   When the dreaded day came, I was sat in the same room and was given the results... CMV positive... I had Cytomegalovirus and it was "definitely" harming the baby. I was then told the baby would not make it to term and if she did she would be deaf & blind or even worse... brain dead. The counselor asked me if I wanted to set up an appointment to terminate the pregnancy... I knew right then that I couldn't... I knew there was a God... though I didn't have a personal relationship with him... I knew there was a Creator and that it wasn't me... I knew it was the Creator's decision and not mine to make. I declined the termination. I was 18 weeks pregnant by this time, but I knew life began at conception... I knew a baby was a baby whether in the womb or out of the womb... I knew abortion was murder.
    I was then placed on a schedule for stress testing and ultrasounds twice a week. Week by week showed more and more problems with the baby. Her bowels were severely calcified, my placenta was severely calcified and limiting the nutrients she was getting, my amniotic fluid was low, her growth was  slowed, she didn't practice her breathing in the womb (did you know they check that?), her heart rate did not accelerate and decelerate like it was suppose to on the monitor... things were looking bad... very, very bad. Then came week 23... this appointment was different... this time two doctors came in as I was getting my ultrasound... two people to attempt to talk me into terminating my pregnancy. They told me they could terminate up to 24 weeks if I changed my mind. They reiterated how bad the situation was... how bad it would be to carry this baby to term... how hard her life would be if she did survive birth...
    All I could think is... "I want to give her the world... I want to hold her hand... I want to be her mom for as long as I can.... I want to live every moment until that day comes... I want to show her what it means to be loved!" 
    I remember praying for my baby... pleading with God for her life... 
    I remember the last ultrasound. The room was dark... the technician was quiet... After a few minutes she told me she needed to get the doctor... I was 36 weeks at this time. The doctor came in and took a look and some measurements and said my fluid was very low and it was time to deliver. He offered to check lung maturity but warned me that CMV usually prevents the lungs from maturing. The amniocentesis confirmed his suspicion... Ana's lungs were not mature and delivery was unavoidable. I refused to let the perinatologist deliver (another moment clearly orchestrated by the Creator Himself!) and was sent back to my OB/GYN. My OB and I had a respect for one another and he agreed to talk with the perinatologist. My OB decided the longest he could give me was 10 days. See Ana's lungs were not just immature... they were abnormally immature for a 36 week old fetus. The perinatologist said her lungs would not mature. 
    God gave Ana 10 days because He knew how and when He wanted to bring her into the world. He knew which doctor He wanted... which hospital... which day... He knew the time. God said to Jeremiah, "Before I formed you in the womb I knew you..." God knows us before we are formed in the womb! God's timing is perfect.
    God brought Ana into the world screaming! Her lungs were fully mature! She could see and hear! She even tested negative for CMV. I know now that God didn't want me to know right away what her diagnosis was. He wanted to use her "undiagnosed" state to bring me to Himself. Ana wasn't diagnosed until she was 3 years old, 6 months after I accepted Jesus Christ as my personal Savior. God knew Ana had Mitochondrial Disease... He knew she would be dependent on a feeding tube... He knew she would be smart... He knew her before she was formed in the womb... and He loved me enough to give her to me that through her life I might come to know Him.

Ana's Birth January 14, 2004

    I love this song and the memories that come flooding back when I hear it.

                                                            ~Emmy

P.S. I am no longer on any social media websites, so feel free to share Ana's blog and let people know I am blogging again! Thanks!
    

    So, I see it has been a while! We have been terribly busy enjoying life! Ana is doing well. Her neuropathy is very much under control with the folate treatment. We have had an uneventful year and a half, Praise God! She just celebrated her 9th birthday... and to think the doctors said she wouldn't survive birth! Wow... God truly amazes me!
    Ana Maria is growing like any other 9 year old with the assistance of the feeding tube... 24/7... yes, still on tube feeds. We did try to wean her off of part of that 24 hour cycle last year, but didn't get the results we hoped for. She does eat more now than she ever has, but her body doesn't break the food down at all. Confusing I know! 
   As for the large intestine... we are back to square one with the daily enema via the malone. At least it is keeping her healthy and hospital free! 
   Ana had been 100% seizure free since October of 2008... until this past August. She had a pretty bad seizure believed to be triggered by a fever of 100 degrees... scary! So the plan for now is to stay fever free!!! Other than that there is no real seizure plan!
   I think that is about it for the mitochondrial disease medical update! Now for the non-mito medical update! Ana broke her wrist and arm! So sad... and at her birthday party two weeks ago! She seems to be recovering well and has a follow-up with the orthopedic today. High doses of Levo-Carnitine + warm cast= ewwww.... Hoping we can address this and some raw spots on her hand today.

Day she broke it! 1-12-13

Day she got casted! 1-15-13

Mommy getting casted! 1-17-13

   Other than my broken foot (did this 3 days before Ana's broken arm) and Ana's arm everyone is doing great! Emily is a college student getting her Bachelors Degree in Religion, Baden is in 8th grade, Isabelle is in 6th, Ana is in 3rd, and Sage is in 1st! Where does the time go? They grow up way too fast!
   That is all I have for now. I will be updating about Ana's arm and my foot as we learn more. Praying she will heal like any other child and not have this cast too long. Also praying I won't need surgery to repair my lisfranc tendon. As of right now the doctors are going to repeat x-rays on my foot February 7th... I should have a clear answer then on whether or not I will need surgery. We know that I broke three bones in my foot, but with bruising and swelling the doctors can't see the tendon right now. 

   Praying all of you are having a great 2013!

MItochondrial Disease Awareness Week 2011

Galatians 6:2

Bear one another's burdens, and thereby fulfill the law of Christ.

I am begging everyone to bear this burden of mitochondrial disease with us for one week! It is so easy! All you have to do is help us turn facebook green by changing your profile picture to the one in this post.

Did you know.....80% of children diagnosed with Mitochondrial Disease before the age of 5 will not survive to see 20 years of age? If it was your child, would this statistic be acceptable to you?
Ana has been sick since birth and was diagnosed at age 3! If this bothers you just a little, then help us spread the word! Change those profile pictures and spread awareness. Let's turn facebook green!

Instructions:

1) Right click on the picture above and save it to your computer.

2) Log in to your facebook profile and click on your profile picture to change it.

3) Click the upload tab and upload the picture to your profile.

4) Leave it up from September 18th to September 24th!

Please visit www.UMDF.orgto learn about other ways to advocate for Ana Maria. The UMDF website will even assist you in sending a letter!