Sunday, March 21, 2010

UPDATE: Day 5 - Not all days can be good days

Jaida's Prayer Box

So not much has changed from yesterday. Pretty much Jaida is still eating from a feeding tube and she is not showing any interest in her bottle whatsoever. She threw up some of her formula early this morning, and they've been giving her 15mL per hour (1/2 oz.) since then. Jaida's nurse Laura told me tonight that a speech therapist will come around tomorrow and try different techniques to try and get her to take her bottle again. She said there isn't one particular reason as to why she isn't interested, but it could be various little things. For instance, her GI tube is running from her nose to her tummy so she can feel it in her throat and that may be irritating her.. another thing could be the fact that she had her breathing tube in for so long and she could be correlating the nipple of the bottle with something else that would go down her throat..there are several different things it could be but whatever it is-- hopefully she'll get over it and start eating like normal so we can go home! Other than that little situation everything else is pretty much the same.. Jaidy did have several wonderful visitors today! Thanks to: Tata, Abu, German, Aida, Juan, Reina, Carlos, Carmen, Daddy, Haydee, Joe, and Jenny for coming to see me!!! We love you guys!

I know that I'm a princess, my Father is the
King of Kings.
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About Me

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My name is Brandi and my darling honey and I have been together a little over four years now. Four months ago I gave birth to our first daughter, Jaida. This little girl is the most amazing Angel that one could imagine. God has truly blessed us in several aspects! I decided to start this blog in order to share Jaida's heart journey with family and friends near and far. Our darling daughter Jaida was born with a congenital heart defect called Tetralogy of Fallot and will be undergoing open heart surgery on March the 16th. My hope is that one day perhaps another heart mom will come across my blog as I have come across several myself, and find that my experiences can possibly help them through their own. Having a child with a heart condition can be awfully challenging mentally, physically and emotionally but EVERYTHING is possible through the hands of GOD.

About Jaida's Special Heart

My daughter was prenatally diagnosed with a Congenital Heart defect (CHD) called Tetralogy of Fallot when I was 22 weeks pregnant. This specific defect is made up of four different issues. The first issue is the ventricular septal defect (VSD) which is a hole between the ventricles. In Jaida's case, she had three large holes (one they did not know about until she was in the operating room) all of which had to be patched. The next issue is obstruction from the right ventricle to the lungs (pulmonary stenosis). Jaida's aorta also lay directly over the VSD which causes thickened muscle in that region that needs to be removed. Lastly, in Jaida's case, the pulmonary valve was extremely small for her gestational age. Unfortunately, due to its cartiledge-like texture, it could not be saved and was removed completely during surgery. Many children can go several years without needing a valve.. some can live life forever without one (most will need one). However, medical professionals are working on a new, less invasive approach to valve replacements. Instead of re-opening the chest cavity between the breastbone, researchers are trying catheterization (a tube placed inside of the vein & artery in the groin that lead up to the heart). I know that before the diagnosis of my daughter's condition, I had no idea about heart disease whatsoever. The bad thing is most people don't know anything about CHD unless they know someone who has it, or it happens to them or their child. Because of this, heart disease research is being poorly funded. In order to research trials and studies for less invasive life-saving surgery for children and families with CHD, it is imperative that more people familiarize themselves with this disease. This type of funding allows doctors to save millions of lives every year. So I encourage you to get involved and to get educated, because this disease is extremely serious and a lot more common than you may think.



Jaida's Story