Tuesday, March 23, 2010

UPDATE: Day 6 & 7

3/22
I am so sorry for not updating last night like I usually do, I was EXHAUSTED!! All day yesterday we were focusing on getting Jaida to take something.. anything from her bottle. Because of having the breathing tube in for so long and then having the feeding tube in, she kind of lost interest of the whole eating thing. Not only that but the coordination of her little tongue is a off too. We did meet with the speech therapist yesterday during the day and she told us that her swallowing and mouth moverments weren't abnormal and were actually expected after a major surgery like hers. So yesterday was pretty much a whole bunch of unsuccessful feeding attempts until daddy got there. As soon as daddy picked her up (Yes, we can actually HOLD her now!!) and started feeding her, she ate TWO WHOLE OUNCES! Yes! Way to go Jaida & daddy!



3/23
Today was a lot more eventful! Jaida ate another two ounces for breakfast (with MOMMY) and then was pretty consistent for the rest of the day with her feeds. We met with the speech therapist again for another evaluation. This time she said that Jaidy was a lot more coordinated than she has been, and that she has improved greatly since yesterday! Yes! We are definitely heading in the right direction. Guess what else happened.. WE GOT TO MOVE TO THE 6TH FLOOR! WOOHOO!! Just so you know, the 6th floor is moderate care meaning a bigger, more private room- a PRIVATE bathroom with a shower that has decent water pressure, and an actual cot as opposed to a chair! I am so happy! The only thing I am not too happy about is all of Jaida's bumps, bruises, scratches, & cuts! I know that they will all heal in time and the most important thing is that her HEART IS FIXED-- but I still don't like seeing her all beat up! =( On a happier note, they took her central neck line out! It's one more tube out of her, and one step closer to home!! Her chest incision is healing very nicely as well. Whoever invited Dermabond has to be a billionaire! Once the glue begins to peel off all that you'll be able to see in a tiny skin colored hairline. I'm sooo glad that this chapter in our life is almost finished! And on another good note.. daddy just got Jaidy to eat almost 4 ounces! We will be out of here in no time! Thank GOD! (And all of you for all of your support and prayers..it hasn't been easy, but your comments encourage us and keep us motivated..from Jaida's heart to yours- THANK YOU!)
 
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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