Sunday, March 21, 2010

UPDATE: Day 4 After Surgery

So things are definitely moving in the right direction. As I mentioned earlier, the goal of today was to get Jaidy eating HER formula again. They tried giving her clear Pedialyte but she would not drink that. Then they tried the orange Pedialyte and she wouldn't take that.. (Lol, stubborn girl like daddy!) so then they tried giving her 1 oz. of her formula but she was just not interested in bottle feeding at all. Basically they gave her a feeding tube and right now they are giving her about 10mL an hour. Tomorrow's goal is to get her drinking atleast 30mL (1 oz.) by 8:00 AM. Just so you guys have an idea.. Jaida drinks anywhere between 5 to 7 oz. a feeding! This is a BIG transition for her! They just want to make sure her little belly can tolerate such a high concentrated substance I guess! Away from that, they removed her other IV and they took out her nasal oxygen completely! (Actually she pulled it out, but her stats were PERFECT so they kept it out!) Also they completely took her off the milrinone and fentanyl drip. Now they are just giving her oral medication for the pain, which is why they needed her to start eating. So just to recap she no longer has any pacing wires or chest tubes, no IVS, no medication running through any IVS, and she is pretty much healing all on her own (w/ the exception of the medication they're giving her orally.. which is every now and then, not continuously) I am SO proud of her and her progression! Honestly, she has the GREATEST doctors & nurses (some better than others..) ever! I am so grateful for these people! I spoke with her nurse tonight who told me that they would probably not end up moving her to the 6th floor (moderate care) tomorrow because it's the weekend but they will probably move her on Monday! There they will really focus getting her eating on track and then we will be able to GO HOME! They said after we move upstairs we should be on the 6th floor for about a week.. shouldn't be any longer than that. I can't wait to have my baby girl home, but thank GOD we are moving right towards that direction!!




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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