This month we our sponsoring
Brewer's mom tells us about his condition: " Brewer has hypoplastic left heart syndrome (HLHS). HLHS is a terminal heart defect where the left side of the heart is under developed and cannot perform it's function. During the course of his life, Brewer will have three different open heart surgeries that will transform his heart from a two ventricle system to a single ventricle system. These surgeries are stop-gaps to help extend his life into his teenage years and possible into his twenties before he will go into heart failure and need a new heart. Since Brewer's birth, on February 26th, he has undergone two of the three surgeries; the first on Febraury 29th and the second on July 19th. Doctor's predict that his third surgery will take place between 3 and 5 years of age.
Because Brewer's heart, his oxygen saturation levels are lower than a person who has a healthy heart. We have to monitor them a few times a day and at night to make sure he's staying in range. It's a little scary because if they fall too low then not enough oxygen will be able to get to his brain and the rest of his body.
When we first came home from the hospital the medical staff informed us that they didn't want Brewer crying because it puts extra stress on his heart, burns valuable calories and his oxygen saturation drops. They also failed to tell us how you prevent a newborn from crying. That was a stressful and constant challenge. We also left the hospital with many "signs" to look for in Brewer's health that might signal a problem, such as labored breathing, dusky skin tones, cold feet, and a hard tummy. It is also crucial that Brewer doesn't catch a cold or some other illness which could set him right back in the hospital in critical condition.
Brewer burns more calories in general, meaning that he needs to eat more and has yet to go for longer than 4 or 5 hour stretch at night. Since we've been home from his second surgery we're pretty much back to a 3 hour eating schedule, eating 7-8 times a day. Babies who have HLHS are also at risk for developmental delays. We are involved in an early intervention program and it feels good to know that we are doing all we can to help Brewer progress. Between feeding Brewer, rocking him to sleep, pumping for breast milk, washing bottles, doing development exercises, keeping Brewer happy, and taking care of the needs of my almost 4 year old, there is usually not much time left to do anything else, like a bathroom break or an occasional meal. Showers have become quite the luxury. Thank goodness I have an amazing husband who has picked up where I am falling short. Since February, he has prepared all the dinners for our family.
My husband is self employed and has been working long days to meet the financial demands we face. While we do have insurance, there are many things that are still not covered, like all our home health care equipment, oxygen, saturation monitor, breast pump, prescriptions and gas to travel to multiple doctor appointments. We also dread the time when we will have to renew our insurance and face the new premiums that will come with a baby who has such a serious heart defect.
There isn't a moment in the day when my mind can stop thinking about Brewer's health and wondering if what we are doing is enough. And at the same time I am so grateful for what we have. Brewer is such a joy when he's feeling well and well rested. Hundreds of people have fallen in love with our sweet boy! There is something different and special about him that can easily been seen through his eyes and I am so grateful that he gets to be a part of our family. Phil and I have given up everything for Brewer and even though there are many times that we feel like there is nothing left to give, we will never quit. Brewer deserves the best chance at a happy and healthy life, just like everybody does and so we will continue to do all we can for him."
What a beautiful family! We hope to be of some help to them by donating $5 of every order placed in September to help care for baby Brewer's expenses. If you would like to make an individual donation aside from the $5 we will donate, please let me know and we will be happy to get that to them.
Monetary donations are great, but if you feel so inclined I am sure this family could use any support. Please leave a comment of encouragement here or visit their own family blog at philandjerai.blogspot.com.
If you use coupon code BREWER we will give you free shipping on your next order. If a separate individual donation is made we will match it! We have had people in the past opt out of the coupon code and ask that $15 they paid for shipping to be forwarded on to the sponsor families. If you choose to do this we will match that $15! (or whatever your shipping cost comes to as it is based on amount purchased).
Let's help baby Brewer!!