Technical Difficulties

Hey everyone! I just wanted to let you know I am aware of the formatting issues on the blog. I'm working on it so hopefully it will be fixed soon :) Thanks for all of your support!

Sedated Echo

Today Kaylee had her echocardiogram under sedation. It was a long day but all went well. We arrived at Driscoll Children's Hospital at 5:30 am. Kay played in the day surgery waiting room until we were called into registration. I must give props to Driscoll because they have so many different toys for all different ages to keep the kiddos occupied while waiting. Once we were called into registration we got our wristbands and filled out paperwork. From there we were put in our room. There they took Kay's vitals and tried to keep her happy. Shortly after someone came to take us to the holding room. In the holding room they gave Kay some loopy medicine to get her to relax. Once she was loopified Kay was a happy camper. She was happy, giggly, and mumbling strange things that didn't make sense. As soon as she was loopy enough they took her to the back to do the procedure. The procedure took no time at all. Once she woke up they called me to the back and she was pretty groggy and grumpy. The cardiologist came in and told me that her AV canal repair still looked perfect although the sub-aortic stenosis that they repaired over a year ago had grown to 50-60% blockage. Overall her heart function was good and her heart is dealing with the sub-aortic stenosis well. He let me know that they wanted to put off having her surgery as much as possible. Kay's dr and the other cardiologists will be discussing her case tomorrow and I should hear back from him soon! I've come to terms that there will be another surgery in the future so the next thing on our agenda is to get past this and do what we have to do to make this her last open heart surgery. Kaylee also has a follow up on May 7th so expect more updates :)

-Kaylee's Mommy

Check up!

We finally saw someone for Kaylee's post op check up. After rescheduling with Kaylee's heart surgeon four times they finally just scheduled an appointment to go see the heart surgeons nurse. But I'm not upset about it... I can't blame Dr. Morales (heart surgeon) for being too busy, after all he is out there saving lives just as he did for Kaylee. There was a lump where her incision was, which worried me. The nurse said there was no need to be concerned and it was normal. The nurse said she looked awesome and we were good to go. It was a very quick appointment and we were in and out the door. Kaylee will be having an appointment coming up soon for an echocardiogram and EKG. I will be updating!

-Kaylee's Mommy

CHD Awareness

The month of February is CHD awareness month! February 7th-14th is CHD awareness week! That means that me and many other people apart of the CHD community will be spreading the word about Congenital Heart Defect. Most of you probably know what a Congenital Heart Defect is but just to be sure I'll refresh your memory! If you don't need a refresh go ahead and skip to the third paragraph!

Congenital means present at birth so a CHD is a defect with the heart that was present at birth. When the baby is growing in the womb sometimes, for unknown reasons, the structure of the heart can develop wrong. Defects in the heart can cause the flow of blood in the heart to be disrupted. Blood in the heart may slow down, go to the wrong direction/place, and/or be blocked completely. Some heart defects can be treated by medicine while others may require a surgical procedure (Heart catheterization, open heart surgery, and heart transplant).  

Congenital Heart Defect is the number one birth defect! And I'm not just talking about number one in the U.S, Its the number one birth defect in the world! One out of one hundred babies will be diagnosed with CHD. Not only is  it the number one birth defect but its also the number one birth defect to cause the most deaths.  Each year over 100,000 children lose their lives because of CHD. These statistics are shocking and disturbing! Whats sad is that most people have no idea what a congenital heart defect is, and that's including medical personnel. What's even more sad is that research for the number one birth defect is the LEAST funded! Awareness of Congenital Heart Defect is SOOO Important! 


Most of you that have been following are aware of Kaylee's experiences with CHD. What you may not know is how lucky we were that an ultrasound tech saw an abnormality with her heart. Most parents do not find out their child has a heart defect until they've gone home and start noticing symptoms and rush them back to the hospital. Other parents don't find out their child has a heart defect until its too late. When Kaylee was born we were mentally prepared and doctors were also prepared to do whatever was needed to care for my daughter. We were lucky. 


To spread awareness I will be spreading the word about CHD and I encourage you to do the same. I have already changed my facebook profile picture

 (Picture credit goes to Kimberly and Matthew Favero, members of the CHD community)
I would hope you would also change your profile picture to help spread awareness! Just "right click" "Save as" and upload it to your facebook and make it your profile picture! 


-Kaylee's Mommy

Dr. appointment

Kaylee had her cardiologist appointment the other day. It went so well I nearly was in tears!! Yes, it was that amazing!!! Kaylee's cardiologist, Dr. Stern, said he was very pleased with how her heart sounded. He said she no longer needed to be on her lasix which means no more heart medicine at all!! That may not sound that amazing, but trust me it is! It is such a relief to know I no longer have to worry about medicine schedules, refills, and waking up to Kay's extremely full pee pee diapers (side effect to lasix). And of course it will make Kaylee's life so much easier! I am so thrilled to know that Kaylee's heart is healthy enough that we don't have to rely on medicine to keep up the function of her heart. Her cardiologist even said that he would be surprised if she ever needed another surgery!!! (That's the part that made me a little teary eyed hehe!) Kaylee is on iron supplements only because her hemoglobin was low when we were discharged. She will only need to be on the supplements for a few more weeks so thats not too bad. But overall I am OVERJOYED with the news from her doctor..Words cant even begin to explain how I feel. BUT unfortunately there is a downside to this post. Kaylee has been experiencing nightmares since she came home from the hospital. Just about every night she wakes up at least once in a screaming fit. It takes at least twenty minutes to calm her down. Its pretty heartbreaking, who knows what shes dreaming about!! I did some research and found that the nightmares are normal and she should be back to normal in two to three weeks, so lets pray and hope for her to get back to her normal self!!!!! Thank you everyone for your support in our tough times. Its so comforting to know that so many people care and love us <3

-Kaylee's Mommy

Made it home

We made it home! After only four days in the hospital we were discharged!

                                                         On the way home!

I know its been a while since I've updated y'all, Its been kinda hectic, but its wonderful to be home with Kaylee. I can tell that she is also thrilled to be home in her own bed. The last couple days at the hospital were terrible. Even though Kaylee was feeling better she was very irritable and I can't blame her. She was completely terrified all the nurses and doctors. Anytime anyone even came in the room she was hysterical. She hated the hospital food, also cant blame her for that! None of us got any sleep since nurses came in every hour to take vitals, give meds, ect.... BUT all of that is in the past now and we need to focus on the future! We are home and happy. As long as I stay on schedule with Kaylee's Tylenol she is content and back to her old happy self. Its amazing how resilient children are.

                                                      First day home!

                                                          First dinner home!

 Yesterday Kaylee had an appointment to remove her two stitches but her Dr. was in the middle of emergency surgery so there was no telling how many hours we would have to wait so I rescheduled. This coming Tuesday Kaylee has an appointment with her cardiologist and they will be doing an echocardiogram (An echocardiogram is a test in which ultrasound is used to examine the heart) and an EKG (an EKG is a test that checks for problems with the electrical activity of your heart). Everything is going so well. Lets be sure to keep our prayers going so hopefully this will be the last surgery she will have to go through.

Day Two Surgery

I haven't gotten a chance to post since Kaylee got out of surgery yesterday so let me fill y'all in! After Kaylee got out of surgery Dr. Morales, her surgeon, told us that surgery went well and she was in recovery. It took a little over thirty minutes before we got to see her in PICU. When we finally got to see her it was a little scary to see, some tears were definitely shed. She had a breathing tube, chest tube, pulse ox, catheter, central IV in neck, IVs in both hands and one in foot, and other wires that don't come to mind at the moment. She woke up every once in a while angry and fighting. I imagine that she was quite uncomfortable with all the breathing tube and chest tube, not to mention the restraints she had on her wrists so she wouldn't be tempted to pull out and wires. It was a little heart breaking to see her crying but there was no sound, only tears. The breathing tube blocked her larynx so she couldn't actually make sound.  Later on in the evening the breathing tube came out and she seemed a little comfier. This morning Kaylee's chest tube and catheter came out. This afternoon her iv on her left hand came out. Her central line came out right before we were moved out of PICU and into our own room. Kaylee actually kicked out her IV in her foot so that was also gone when we went to our room. She is now very content in our new room as long as nurses and drs stay at a distance. Earlier she got to walk around and play in the play room, she LOVED it! Grandma Sonda pulled Kaylee around in the wagon and she also got pushed around in this little car thingy?

 Even through all of this her cute little funny personality shined through. She giggled to her favorite show Yo Gabba Gabba, and she pretended her remote was a phone (everything electronic is a phone to Kaylee).

Its time to get some Zzzzz....Goodnight!

-Kaylee's Mommy