Thursday, April 11, 2013
Wednesday, April 10, 2013
- 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...|
|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.|
Tuesday, April 9, 2013
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.)
Monday, March 4, 2013
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!|
Tuesday, February 5, 2013
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|
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!
Friday, January 25, 2013
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.
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!
Monday, September 19, 2011
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!