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9/19/19 - Day 30, What a Month...

As of Tuesday, Ronen is 4 weeks old, as of the 20th he'll be one month. What a month it has been! He is growing, and making friends with everyone who comes to work with him. It's been nice for us to have some friends come to hang out with us the hospital periodically now that Ronen is more interactive and holdable.

In terms of his breathing, Ronen was weaned today to a CPAP level of 7 (PIP) on 21% oxygen, which is air-quality. Hooray! The attending neonatologist told us that the goal in this phase is ultimately to get him to a CPAP level of 6, after which he can be transitioned to high-flow oxygen. Unlike NIPPV, CPAP delivers constant pressure but not additional breaths, so there's somewhat less constant beeping. When the high-flow level is down to 3, we can start trying to feed Ronen by mouth rather than NG tube. Steps in the right direction.

The doctors have been curious as to why Ronen's respiratory rate is still intermittently high, so it has been a week of tests. Ronen had two ultrasounds and an MRI this past week. The ultrasounds he was amenable to, the MRI... not so much. We'll hear eventually if there were enough good pictures from the MRI that the radiologist has what to read, or whether they'll need to sedate him for an additional test. It seems to us that Ronen responds to touch positively, and his respiratory rate decrease and stays stable when one of us rubs his back or at least sits next to him. He also responds positively to music in the same way. Our nurse yesterday thought that the fact that his respiratory rate is responsive to his environment might indicate that his intermittent spikes in respiratory rate are stress-related rather than related to his physical condition.

The ultrasound showed that the corner of Ronen's liver may be protruding through the hole in his diaphragm. We learned that because the hole was very large, and there was very little diaphragmatic tissue to which the surgeons could adhere the patch, they left a hole by necessity in one side because there was no tissue to which they could stitch the patch there, and they obviously could not stitch it to his heart. All of this is hard for us to hear as parents and non-medical professionals, but our surgeon indicated that in his experience there should be scar tissue that heals around the liver and that it shouldn't cause a problem now or in the future. Another consulting surgeon indicated that there may be a need for surgery in the distant future, but assured us that we shouldn't be "waiting for the other shoe to drop" either -- that as long as continues to be well-monitored, any problem should be detected before it becomes an emergency, if there ever is one. In the meantime, even if Ronen's liver is protruding through the hole, it isn't affecting his breathing, his liver function, or his bowel/digestion (he is a great pooper!), so the doctors are not concerned.

We continue to be grateful for the care we're getting from the amazing team at Children's. We've also hooked into resources from CDH International and its family support division, CHERUBS. Having signed up for their list, we have access to their private Facebook group, and they sent us a lovely care package that included a source book about CDH, a folder with resources, and several baby-related things. If you're interested in learning more about CDH, I highly recommend exploring these websites. Anyone can join their lists, and you're more than welcome to do the same.

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