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. Some babies may

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 to think positively. We are

How does a G tube work? A few people have asked me how the feeding tube works. How is it different from feeding a baby orally? Is it scary? Is it hard to do?  Well it was a lot of steps to learn, very important steps that we cannot forget. But truthfully, once you operate a feeding tube a few times, it becomes second nature. Ill show you what exactly a G tube is and a feeding pump. There are many different types of feeding tubes (NG, NJ, GJ, J, G, ETC) and different types of pumps (kangaroo, infinity, etc). Chloe has a Mic-key G tube with an infinity teal pump. She is on continuous feeds and not gravity feeds. So as you can see in the diagram, the balloon is inside of the stomach. The balloon is inflated with about 5 mls of water and that keeps the g tube in place. The tube goes from inside the stomach to the outside. On the outside of the tummy, you can see the button and her tube which connects to the button.  The button consists of the balloon inflation valve, t

Quick Update Just a quick update on Chloe! She was admitted to the hospital again two nights ago because her G-tube was leaking. Because of her history, anytime even something seemingly minor happens, a hospitalization is usually in order. She is ok. The balloon in the G tube was checked multiple times. She most likely just pulled on it because the leaking did stop and it does not look as irritated.   As far as her being sick, she still is. She has been sick almost 3 weeks now but this is normal for unprepared heart warriors- its just so hard on their body! Praying she can kick this cold soon! 

Hospital Update! Its been a while since I posted, we've just been too busy! Theres good news and not-so-good news. The good news.....Chloe has been discharged! She was in the hospital for about a week and needing oxygen on and off. After she wasn't needing oxygen for at least 24 hrs she was cleared to go home. The bad news is she is still sick! Still congested, coughing and throwing up. Chloe tested positive for a cold and has been sick for over 2 weeks now. We are using Vicks vaporizer, keeping her warm, and venting her more often but nothing seems to help. We even lowered the rate of food going into her (more time on the tube at a lower rate) but she's still throwing up the same amount so its not a feeding issue. We talked to Chloes Cardiologist and he said cardiac babies get sick very often and stay sick for a long time. After her repair she shouldn't stay sick as long and won't need oxygen when sick though. So this means the full repair has been pushed back

Admitted to the Hospital Two steps forward and one step back. Chloe's full repair surgery was supposed to be soon...very soon. Now we wait another 6 weeks. The reason being she's very very ssick.  Right now im holding Chloe in my lap and rocking her in this hospital chair.  She just threw up for the sixth time this hour. For almost a week now Chloe has been sick. We've all been sick but as Kody and I got better, Chloe got worse. She's at the point where she's throwing up excessively causing dehydration, has a cough and is very congested. Of course she smiles through it all.  My brave little penguin .  She's been admitted to the hospital for IV fluids and nutrition. She is also on a bit of oxygen because her o2 SATs keep dropping.  I will keep everyone updated. Right now im going to cuddle my sick baby 

Before vs. After Baby Glasses Even just 1 day after getting Chloe glasses, I can see a huge change! Chloe has a very strong prescription-shes extremely far sighted.  Before the glasses, we could never hang toys or a mobile above her, she would blink a lot and start crying. We couldn't get super close to her face or kiss her nose without her blinking a lot either. I would hold the books as far away as possible while reading to her and still she wasn't focused. If we held her on our lap and had her face us, Chloe wouldn't even look at us because we were too close. When we went for walks she got crazy excited about trees because they are so high up she could actually see them! You get the idea.    Today I tried something new....hanging toys above her when she was playing on her mat. For the first time ever, she didn't blink fast or cry! You can see that she's actually focused on the toy hanging and really examining it!      Amazing! But thats not all..she

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 around or slide of her face. Im 

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 weight that she has been gaining will

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 unusual activity. That was very

Some Background Info Pt. 2! I never believed anybody who told me "It gets easier" "things will get better" "soon this will become normal". But to my surprise, it actually did!! we just took things one day at a time, reached out to support groups, and learned more about Chloe. Actually, this is part of the reason I started this blog. If I can help anyone know that it truly does get better and that you are not alone then I am happy. Chloe went from a very fragile, miserable, healing newborn to a happy, active 6 months old with quite the personality! I thank God for getting us through it. We managed to do what we thought was impossible. Not only are we just getting by, we are very very happy and so proud of Chloe. I do not regret a single thing. Of course if I could, I would trade places with my daughter and take away the complications, but I also believe everything happens for a reason and I would not change a thing. Everything that we went through and wi

Some background info! Some background info on Chloe! She was born on April 29 2018, 5 lbs 15 oz, 19 inches. The night she was born she was transferred to St.Josephs Childrens Hospital where she spent the first few months of her life there. She was diagnosed with Tetrology of Fallot with Pulmonary Artresia shortly after birth. It is a heart condition which is essentially 4 heart conditions in 1. When chloe was just 3 days old she had her first open heart surgery to add a BT shunt to her hear to increase blood flow into her lungs. The BT shunt was not enough because she could not get off life support for about a week. When nursed tried to extubate Chloe from the Ecmo, her oxygen was very very low for over 50 minutes! Its a miracle that she is still with us and not severely affected. Shortly after that, Chloe had another operation on her heart to add a stent to that BT shunt. Chloe still wasn't ready to come home...the Doctors found a hiatal hernia and her severe reflux was causing