Chloe's journey

SYNAGIS Yesterday, Chloe got her second round of SYNAGIS shots. Synagis gives high-risk babies the infection-fighting antibodies they lack, helping protect their vulnerable lungs from RSV. Chloe qualifies because of her heart condition. Chloe has to get these shots every month during RSV season until she's 2 years old. Chloe has gotten 3 colds this RSV/Flu season, each cold landing her in the hospital. We've limited visitations, been extra hygienic and been the helicopter parents who stops strangers from touching her at all. Its not that we are scared of dirt and germs but we are trying our best to protect our babies fragile immune system from the things that could land her back at the hospital. I am so thankful that she qualifies for this synagis shots because RSV could actually do a lot worse than give her a hospital stay. It could kill her. Please do your part this season and wash your hands, don't touch strangers babies and cough into your elbow, etc...

Open Heart Surgery Today was such a busy day... a couple of appointments for Chloe, cleaning, etc. Today was also a bit life changing. We now have a date for Chloe's open heart surgery.  When she was born, we were told her full repair would be between 4-6 months old or when she is at least 13 lbs. Her surgery was pushed back 3 times because she kept getting sick! Now at almost 7 months and almost 15 lbs we finally have a date!!. Chloe will be going for a cardiac catheterization in 3 days, November 29th so the surgeon will have the correct measurements and pressures of her heart. The actual surgery date is set for December 7th, a Friday and the day before her dads birthday.  We are anxiously awaiting and counting down. We have been waiting for this day for way too long. Now its not even 2 weeks from now. Just 11 days!! I am still in a bit of disbelief. I keep thinking she's going to get sick again and it will push it back even further. I know I need t...

Babies in glasses??  Have you ever seen a baby, not even a year old yet in glasses?? Its not something Ive seen just at the grocery store. The truth is, not a lot of people get their babies vision checked. Well we did. Chloe kept crossing her eyes and she would blink a lot and cry if toys hang above her or if things were too close to her face. I am so glad we got her checked because she is very very farsighted. Of course she's a baby so all babies this age would be to an extent, but Chloe has a very strong prescription.  We went to Bright Eyes Kids in New Tampa! They were so helpful in helping me find the perfect frame and fit for Chloe and they had lots of options. Today is an amazing day because we received her very first pair of baby glasses! They come in such a cute case and a strap to keep it on her face. I am surprised at how well they stay on Chloes face..she doesn't even try to take them off! They don't budge when she's rolling arou...

Chloe latest Cardiology Appointment  Chloe had her biweekly cardiology appointment on Friday. This appointment was different though. She had her usual Echo, EKG, pulse ox check, height and weight. But this time, her cardiologist said "Has the surgical team called you yet?"....nope?  "If you do not hear from them by monday morning, call the surgeon on tuesday. Here is his personal number."    On wednesday, the surgery team discussed Chloes case. Her full heart repair will be soon! We all want her to have the heart repair before cold and flu season or if she gets sick, it pushes the surgery back another 6 weeks!  So this thursday, Chloe and I meet with her heart surgeon.  The nerves have officially begun. Yes she has already had an open heart surgery and a few heart catheterizations, but the full repair is much more intense. Much more involved. She most likely will need to be put on a heart-lung bypass machine. I pray that the weig...

Neurology appointment for baby My 6 month old Chloe had a neurology appointment. I wasn't sure what to expect and I was a little bit nervous. Although she's not showing any signs of anything being wrong, she does have an extensive medical history, a long hypopoxic event and a chromosome deletion (part of the long branch of the 19th chromosome). We are still not sure of the significance of that deletion. Here is what happened during her first neurology visit.   First the doctor asked all about her history, family history, diagnosis, etc. She also did a physical exam. She wanted to see her head control, how she does with tummy time, eye contact, following objects, etc. Chloe did good but she did get a little bit fussy from being messed with. She noted how active she was, a good thing right?   After that Chloe had an EEG. The hard part was trying to keep chloe still for so long. Luckily, she actually fell asleep! Her EEG came back great!! no ...