William’s Story

Site created on December 22, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place about William's condition and journey with CDH. We appreciate your support and words of hope and encouragement. Thank you for visiting. For full information about this condition and what it entails, refer to my first journal entry below from December 22nd.

Newest Update

Journal entry by Heather Temple

Hi everyone. Sorry I haven't updated recently. I started working again on February 18th because my disability ended. I am saving my bonding time for when he comes home. So much has happened so I will summarize everything! William has made HUGE improvements and is hopefully within a week or 2 from coming home! He went from high flow to low flow and has been on that for a while now and doing well on it. He is currently on 3/4 liter of 100% oxygen right now, and that is likely what he will come home on. We will have an oxygen tank when we bring him home. He will likely have this for a little while until his lungs are able to develop more.

He has went from about 8.8 pounds and is now almost 10 pounds!! As of Sunday, he weighed 9 pounds and 15.8 ounces! He is growing which is good.

Since my last post, we have been mostly working on feeding him. This has been a slow process with ups and downs. I was able to begin breastfeeding and he was doing well. He would feed from 5 minutes to 20 minutes and the timing kept varying, but he was doing well and showed interest. He also went from 15 mls of bottle feeds to about 50 mls consistently. Then something happened and for some reason he didn't want to bottle or breastfeed as much. His full feed is about 80 mls so when he was at 50mls he was very close to being at a full feed. THere have been times where he has taken an 80 ml, 75 and 60 ml bottle, but then tired quickly and wouldn't feed the rest of the day. (Note, if he didn't feed on the bottle or breast, they still have a feeding tube in where they run the rest of his milk through the tube, so he is still getting his nutrition that he needs to grow and develop.)

This is the biggest thing keeping him from coming home. He has started to present symptoms of oral aversion which is NOT good. As a result he has had little interest in breastfeeding and bottle feeding is hit or miss. He has stopped breastfeeding entirely and this breaks my mama heart. He pulls away and gags and seems interested, but then gets upset. Please pray that this oral aversion gets better so I can breastfeed him some, and that he will at least take a bottle. He obviously will need to do one or the other at some point.

I request prayers as tomorrow morning he is likely having a G tube placed. This is a hole/tube they put directly into his stomach for feeding. It sounds scary, and while it is another minor surgical procedure, this means he can come home within the next week or so!! THis also means that since he is having oral aversions, I can work with him at home where I can be consistent and create a happy experience for him and not stress about having to feed him. If he doesn't take a bottle, I just feed it directly into his stomach via a tube. Pray that everything goes well and that his stomach is in a good position for them to be able to place the g tube. If he cannot have the g tube placed, there are other alternatives, but they are less desirable because it has more crazy risks, despite being less invasive because they don't require surgery. All in all, the g tube route were what Zeb and I preferred.

He has been off morphine for about a week and has done well off of it. So that is a huge improvement as well.

I was able to see a recent xray of his lungs and they have already improved soo much. We met with a pulmonologist last night and he explained how the lungs grow and develop. He said that the lungs grow so much function within the first 2 years of life and that it is crucial for someone with CDH to be able to get enough nutrition to help them develop. His lungs will continue to grow in size until about age 7 or so, but the first 2 years are crucial to developing good functioning lungs. As such, I am determined to get his feeding under control so he can grow. And even if he has problems with feeding, at least he will have the g tube (hopefully as long as everything can be placed tomorrow) to help him get the nutrition he needs. I am pumping a lot of milk right now to help with his development so that is good for him to have too.

Please pray that his feeding can get better and we can get the g tube out sooner rather than later. How long the g tube is in will depend on William and how well he does. Please pray that they are able to place the g tube into his stomach and that the surgical procedure goes well. And please pray that his lungs continue to develop and grow.

Thank you all for all of our love and support. Please pray we get to bring him home soon!!
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