Chloe's journey

Feeding Chloe Update  I just wanted to post an update on feeding chloe.  Ever since her heart surgery, she has been eating an entire jar of baby food each sitting!! We feed her 1-2 times a day right now. She's finishing that jar in 20 minutes or less with no puking or choking! This is such an improvement and it gives me hope especially when we resume feeding therapy. As for taking a bottle, no progress but she's 8 months old so I'm not too worried. We will be working with a sippy cup soon though .   Another update is the tube feedings. Before the surgery we we're slowly making our way to bolus feeds but we did put the compressions on hold just in case she didn't tolerate it.  3 days ago I compressed her feeds again and she's tolerating it beautifully .Now she's at a higher rate and gets 6 hours off the tube instead of 4! My plan is to take her off the tube 3 times a day for 2 hours. Before connecting her back to the tube I will first feed her by mouth. If...

Feeding Chloe  As you know, Chloe is primarily tube-fed. We do feed her by mouth after her hours off the tube, so twice a day for now . Chloe's goal set by her feeding therapist is currently for her to eat 15 MLs of baby food and 5 MLs of milk per feeding session. She enjoys baby food more than the milk. Actually she does not understand that she has to suck the bottle, instead she bites it or just plays with it. The way things are, I am not totally confident that she will ever take a bottle enough to get off the tube feeds any time soon. As long as she is at least progressing further with the baby food we are happy because by the time she is able to eat enough by mouth to sustain herself and not need the tube, she will probably be too old for a bottle anyways. Today, Chloe really surprised us! Not only did she meet her goal for the baby food, she ate way more than she ever ate. She actually ate an entire jar of baby food!! Yay Chloe!! I think the reason she ate so much this ti...

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...

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!   ...

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 ...