Did you know...

1% of the world's population will be born with some type of heart disease. Only 1/3 of those people will actually be diagnosed, and fewer receive life saving surgery.

Wow. Take a minute and re-read the above statements.

I found this website while I was looking up some information on congenital heart defects. The website goes on to explain that in developing nations, when a baby is born with a congenital heart defect it is often undiagnosed until the child begins to have difficulty eating, not growing, and turning blue. This is when the nightmare begins for the child and his or her parents. "Local doctors will tell them there is no one who can help in their country. They will be told that they can send their child to London, or the United States or some other developed country that has trained doctors. But, it costs more money than most of these parents would ever see in their lifetime." Imagine the anguish of parents in underdeveloped or remote regions who have no one to work this miracle on their suffering child. Imagine having no alternative to watching your child waste away and die. A simple procedure performed by skilled surgeons could save many children. The challenge is to get skilled doctors to the children in time to save them. As I continued reading the website I learned that it is an actual site that recruits medical personnel to travel to these underdeveloped countries to save childrens' lives!! How amazing is that? A recruiting site to assist low-income individuals, whose family member needs surgery to save their life. If you have some time, you should check it out: http://www.babyheart.org/ <<

On another note, I know that it has been a long time since I have written. I've been extremely busy working on a plan that I think will make a difference in CHD research. It's not anything spectacular at the moment, but hopefully when i'm ready to unveil my "project" it will spread by word of mouth. I really think that we, as a community, can make a difference in these childrens lives!! Remember, every penny counts!! I'm searching for an organization right now that I can partner up with. Once I find one, I'll be ready to let you guys know what's happening! If anyone knows of a charitable CHD organization/foundation (local or international) please let me know. (My e-mail address is HigginsBD@yahoo.com)

 Other than that Jaidy is doing absolutely wonderfully! On the 16th it will be two months since her surgery and she is doing AWESOME! If you were unable to see her scar, you would never be able to tell she had anything wrong with her. I'm so blessed to have such an ANGEL here on earth with me. She is growing up soooo fast! I need time to SLOWWWWW down!! :-)
 

What you didn't know about the surgery..

I am a CHD mommy:

I will have my outbursts.

I will have my moments where I break down in tears, for no apparent reason.

I will love my child and hold onto her tighter than anyone can imagine.

I will devote my life to my child, like tomorrow may be my last…

 

I am a CHD mommy.

 

This is what I saw when I walked into Room 316 of Baptist's PICU on March 16th, 2010. Initially I wasn't going to share these pictures publically, but then I decided I owe it to you guys. Those of you that have been following Jaida and I (through this blog) since day one, deserve to know the whole truth and reality of what this tiny angel (& our family) went through. Another reason I decided to share these pictures is because I have been explaining in several of my posts that preparation was what kept me sane. Well I know for sure that one day, somewhere, there will be a heart mommy that will come across this blog.. and she will be looking for answers. She will ask God why this happened to her child, she will want to know what to expect, and she will probably be scared after looking at these photos. The truth is..this was the reality of the situation. The good news is that it WILL GET BETTER. Remember this: one step forward, two steps back. He or she will get better then get worse and then get better. This Tuesday, April 6th will be three weeks since Jaidy's surgery. She hasn't even hit the three week mark and look at her:

The point of this post is not to scare anyone or make you sad. I decided if I was going to share Jaida's heart journey with the world, I wanted to share the whole journey, not just what I think people will WANT to see. As you can see from the pictures above my daughter is an angel. By looking at her you would never be able to tell that she was ever sick. For me, she is perfect. Always has been- always will be. If you find yourself in this same situation, or something similar just remember that God doesn't leave things unfinished and just like He healed Jaida- He will heal your child (or family member, or friend, or whomever you may know..) the same way. That is why He is called "Healer." Don't give up on God- He will never give up on you.

On a completely different note-- I hope everyone had a wonderful Easter. I know I did. Mrs. Marte said it best..Today is the best day in national history.. no day will ever be greater than this..except the day I die.

Psalm 34:1-10, 15, 17-18

I bless GOD every chance I get;

my lungs expand with his praise.

I live and breathe GOD;

if things aren’t going well, hear this and be happy:

Join me in spreading the news;

together let’s get the word out.

GOD met me more than halfway,

he freed me from my anxious fears.

Look at him; give him your warmest smile.

Never hide your feelings from him.

When I was desperate, I called out,

and GOD got me out of a tight spot.

GOD’s angel sets up a circle of

protection around us while we pray.

Open your mouth and taste, open your eyes and see—

how good GOD is.

Blessed are you who run to him.

Worship GOD if you want the best;

worship opens doors to all his goodness.

Young lions on the prowl get hungry,

but GOD-seekers are full of God…

GOD keeps an eye on his friends,

his ears pick up every moan and groan.

Is anyone crying for help? GOD is listening,

ready to rescue you.

If your heart is broken, you’ll find GOD right there;

if you’re kicked in the gut, he’ll help you catch your breath.

Isaiah 61:7

“Because you got a double dose of trouble

and more than your share of contempt,

Your inheritance in the land will be doubled

and your joy go on forever.”

Thank you Jesus!

 

(*Disclaimer: this blog was created by me simply to share my own personal opinions, experiences, and views with you. Being a Christian, I will be referring to religious content. I am in no way trying to shape your religious views and I am not necessarily stating complete facts at all times. Again, these are my own personal views. I hope I do not offend anyone in anyway, and if I do I apologize in advance. Thank you!*) 

I first want to apologize for not writing on here in a few days. Since we've been home I've been pretty busy getting used to "normal life" again. I definitely will keep writing regularly again (maybe not every day) but perhaps every other or so. Initially I created this blog simply to share Jaida's heart journey with friends and family near and far.. and then after a few requests to continue blogging and some in depth thought, i've decided that it would be silly and meaningless to stop blogging just because Jaida is out of the hospital. After all, Jaida's heart journey didn't end at the hospital. Once a heart baby.. always a heart baby. Anyways, this particular blog may be completely off the wall.. but it will carry some meaning, and hopefully will leave you with a little more faith and hope than you came here with. 

Okay.. here goes; A few people have asked me how I remained so positive and strong throughout this whole ordeal. The truth is there are several factors that helped me along the way. I'm going to try and explain what helped me during what I believe has been the biggest test of my lifetime thus far. First and foremost as I mentioned in earlier posts, I prepared myself big time for this simply by reading. From the time I was 22 weeks pregnant and found out about Jaida's heart, I was researching. I can't stress enough how important it was to mentally prepared for everything I was going to endure. I surrounded myself with other heart moms and listened to their experiences. I also looked online for other Tet moms like myself whose children already had their tet repairs done. I didn't focus much on the medical side of this CHD after the initial diagnosis simply because websites like WebMD and Wikipedia can only give so much information, you know? It put me at ease to read what "normal" people just like me and you did in the same situation I was in. The second key factor that helped me remain positive was finding a support group. Supernatural blessings occur on a daily basis in my church. Being in the presence of greatness and placing myself and my daughter in a positive light at all times helped me focus more on my faith. Month after month turned into week after week, which then turned into day by day prayers coming from all around the world. The word traveled from mouths in our church, to their family members near and far-as well as to different church affiliations such as miracle conferences where I presented my daughter's special heart in front of hundreds of people, declaring a supernatural healing on her and asking for mouths to move in prayers as God blessed her heart entirely. Which brings me to the most important key factor in all of this. My faith in Jesus Christ. My strength directly is a result of Him. He must have touched my body and soul while I was sleeping and gave me the confidence in Him that I needed to get through such a difficult task. At times the devil wanted to wreak havoc in my life and put negative thoughts and what-ifs into my brain. However, Jesus Christ as usual, overpowered any and everything evil that came about. You see, I have a huge philosophy on the nasty devil..We know that sickness and death entered the world when Adam and Eve committed the first sin which condemned mankind. In the Garden of Eden, there was no violence, no sickness, and no death. Simply put, it was the Heaven on earth. Then, when Adam and Eve were banished from Eden, the curse was laid upon mankind... then the first murder occurred, then war, etc.. God did not cause the diseases.. it was all apart of the curse because man chose to disobey God to begin with. (Which is why non believers have such difficult tasks to overcome.. without God it will be impossible!!) So now we have to live with it.. the good and the bad of this world. Outside of Eden, this world we live in is satan's playground. This is where he snares his prey and if you let him, you become a victim. It's a matter of choice. Many people don't realize that we are actually engaged in a supernatural battle and the prize is our soul. Everything that we experience here on earth boils down to the battle for man's soul. Who will possess it in the end is decided by you and I, by what we believe in, by the choices we make, and by the paths we choose to take. Good or bad, right or wrong, truth or false..it is our decision to choose. It just so happens I am a believer of Jesus Christ. I am a full-fledged follower of Him and everything He is. I believe He died on the cross for OUR sins, and I believe that He is the ultimate healer. and Redeemer. Never did it cross my mind that HE would let me or Jaida down. That comfort kept my mind peaceful and at ease for nine long days. I actually went to the Passion play here in Jacksonville on Sunday. The images are still running through my head, and I can't help but to mention how beautiful everything was set up there. Now that Resurrection Sunday is approaching I think these things are the most important facts to remember: All of the other Biblical sacrifices died..the lamb, the goat, and the bird..never to be seen again. However, Jesus Christ rose again. That's a really big deal. Probably the most important event that has ever occurred in 7,000 years.. or actually..EVER in human history..the Resurrection of Jesus Christ. A one-hundred percent man, that was one-hundred percent God died a horrible death and then THREE DAYS LATER raised himself from His tomb... rolled away a several ton rock,..and then walked out still bearing the holes in his hands and feet ... the marks of the price he paid on our behalf. If I don't speak to you before hand, Happy Easter everyone.. I hope this blog lifted your spirits a bit and gave you a little insight on what helped me through this difficult time in my life. God bless you, I love you.. take care!

UPDATE: DAYS 8 & 9

3/24

Boring..boring day!! Sooo ready to finally get out of this hospital. At this point everyone's main concern is getting Jaida eating how she used to before surgery. It's weird because sometimes she'll eat 4 oz. and then others she'll eat about 2oz and 25mL and be too tired to drink anything else! This up and down stuff has got to stop! Other than focusing on getting her eating habits up, i've pretty much been lounging around all day.. not much to do in a hospital lol. Daddy didn't come visit us tonight because he was cleaning the house, getting it ready for baby girl and I to go home!! =) Chances are if Jaida eats consistently tonight and both her chest xray and echo looks good, we'll be going home tomorrow! YEAAAAAAAAAAAAAH!!

3/25

So who would've thought it would just start storming out of nowhere? Such a great night to be home in bed snuggling with your loved ones.. which is EXACTLY WHAT I AM DOING!! Yes! Jaida and I left the hospital today! Thank the Lord!! Her chest xray was fine and her echo looked pretty good too. The only thing the found was still a tiny bit of fluid around her heart. They actually prescribed her Lasix which should help that out a lot!! Other than that, she's doing perfectly! She really did heal nicely. Thank the Lord there were no major issues!!! Just a few bumps here and there..but just like Mrs. Val said.. you take one step forward and two steps back. I'm just happy that her particular problem could be fixed. Through the hands of God that directed her surgeon, her little heart is healed!! Thank God for a perfectly healthy baby girl! Thank you guys once again for reading up on her and giving me feedback, words of wisdom and encouragement, and just simply keeping track of what was going on. It's so nice to know that so many of you guys took the time to read this blog. I truly made this for you guys!! If one person read this and they know a heart mom.. they can pass my experience to them as someone did for me, and it can really impact this whole heart experience. This stuff is definitely intense, i'm not going to try and pretend it wasn't-- but by surrounding myself with positivity and peace, it made the ride a lot smoother! I'm not ending this blog here. Initially I was going to just make this to share Jaida's heart journey with everyone and then I realized her heart journey isn't over.. Jaida is going to have a special heart for the rest of her life-- why end here? This isn't the END of her journey, this is only the beginning! Thanks again for reading..i'll be updating this frequently as time progresses and my angel grows. I love you guys!!!

Soo ready to go mommy!!

& the packing begins.. this is just a little bit..

"My mommy is sooooo funny!!!"

"Please.. no pictures!! I must FOCUS!"

(& yes that was my temp. cot!!)

My babygirl & her big move OUT of the PICU!

Waiting to get out of the PICU for good!!

"I'm still waiting, and i'm not happy."

Tata is trying to hide lol.. & the bandaid is where her chest

tube was

Such a happy girl!

She has already grown so much since we've been here!

She's going to be TALL like mommy!

All smiles all the time :)

Say bye-bye to the stinky PICU room!

& We're off!!!

Ohh, this is different..

Passed out on mommy. Note the scratches on her face: the

result of her trying to snatch her oxygen tube out a few

days ago.

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!)

 

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.

& We got to dress her up!!

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!!

The more difficult the situation, the stronger it makes you

Continuation of day three..

                                                                                                                  (THIS IS GONE!!)

THANKS FOR ALL OF YOUR PRAYERS! THEY HAVE ALL WORKED AND JAIDA IS DOING SO MUCH BETTER!! THANK YOU- THANK YOU- THANK YOU !!!! So like I said, yesterday was an extremely eventful day! Today Jaida is wide awake and alert..She doesn't seem like she is in pain, and she hasn't been crying at all. She's one tough cookie! The nurse last night got her a mobile that has three little birds that flap their wings and chirp. She loves it!! ALL of her stats are completely PERFECT!! They said that she will probably be able to eat today! I'm so happy! We are getting closer and closer to the 6th floor (moderate care) and then ultimately HOME! *Actually, the team just did rounds and they are going to give her some Pedialyte. If she can tolerate that then she is going to get some of HER formula later on!!!* Also, the nurse just took out one of her IVS (the one that measures her blood pressure) because they said she doesn't need it anymore! So now all that's left in one IV in one of her hands, her oxygen (through the nose), and her central line tube in her neck. I'm so happy! The nurse also said if they can ween her off and eventually completely cut the milrinone (balances perfusion), then she may possibly move to the 6th floor tomorrow! YES!! God is GREAT a.t.t!!