Ethan's Update - Early Morning, Day 3

Well they said this journey was going to be like a "rollercoaster" and the last 20 hours have been just that for us. Yesterday for the most part was a really good day for Ethan. After the doctors confirmed the diagnosis of RDS and Pulmonary Hypertension (PPHN) with the morning's echocardiogram, they felt more confident in their treatment plan. He was on the C-PAP machine, and he was getting stronger and stronger all day long. His assisted oxygen level dropped from an avg of 45% to 31% which means he was doing a lot more breathing on his own, and his oxygen circulation was pretty good. He had good color, and was resting comfortably.

He was doing so well, that at around 5pm, they let me touch him for the very first time. On the day he was born, when he came out, the nurses had him, and were cleaning him up. I took a few pictures, but did not have the chance to hold or touch him. Then they gave the baby to Jayme to hold for a few minutes, and immediately after that they noticed the breathing troubles, and Ethan was taken by the nurses, and all I was allowed to do was follow along as they rushed him from check-up to check-up and then to the NICU where he was placed in an incubator. Yesterday, they allowed Jayme and I to reach into the incubator and place a hand on his head, and the other on his feet. We were not allowed to rub him, or move our hands in any way, but at least we were able to make actual physical contact. Things seems to be moving in the right direction.

Then at 7ish yesterday evening, things started to change. First his IV in his hand started to have problems as the injection site started to swell. This resulted in them having to move the IV to the other hand. Then, his extremities started to have circulation issues, so they had to remove a tube in his belly to treat that problem, but that meant they had to up the feeding volume in his hand. This later proved to be an issue, so they had to move the IV site, yet again into his foot. Then things relaxed until about 3:30 am. Around that time Ethan started to fatigue. All of his hard work over the last few days, trying to breathe, and fighting for air, and just getting accustomed to being here in the "outside world" wore him out. As a result the muscles in his chest just tired out too much and his breathing became very labored. With him fighting for each breath, even with the c-pap on and turned all the way up, the doctor made the decision that it was time to intubate. This means removing the c-pap, and instead inserting a tube directly into his lungs through his mouth. This tube gets connected to a ventilator, and this allows for him to have to "do less" to breathe.

After they did that, his breathing started coming much easier, and he was able to relax and re-saturate his body with air. They took blood cultures and they found that through fighting so much to breathe, Ethan used up all of the Surfactant that his lungs had produced over the last day or so. Surfactant is the substance in the lungs that allow for the alveoli (air sacs) in the lungs to maintain their shape and elasticity. Because the surfactant is essential for Ethan to continue to develop, they decided to administer his first dose of synthetic surfactant. Their hope was that this first dose would stop his decline, and then depending on how he reacts to the dose, possibly administer some additional doses to help him improve.

At 6:30 this morning they gave him his first dose of the surfactant, and he took it very well. His chest immediately stopped straining, and his O2 saturation rose back into the high 90% range, which is exactly where he belongs. He did so well with it, that they were again ale to reduce the amount of oxygen the ventilator was supplying, dropping it from 45% down to 38%. He is now resting peacefully, and it appears he is recovering his strength.

As far as long term prognosis, the doctor assures us nothing has changed. This little downturn may ultimately result in a slightly longer stay in the hospital, but other than that, they still expect that when he does come home, he will be a completely happy, healthy baby.

It has been another emotionally exhausting night for Jayme and I. Jayme has finally fallen asleep, which is an absolute must as she still needs to focus on getting her own self back to full strength. For me, I am just emotionally spent right now, trying to be strong for Jayme, Ethan and Loryn, and I am again beyond the point of being able to sleep. I guess sitting here writing this all down is kind of my own "therapy" if you will.

The plan is for them to release Jayme from the hospital later this morning, and that likely means another difficult emotional step as we have to leave the hospital without our son. He will however continue to receive the excellent care that he needs to get better and that to me is the most important part. Over the next week, Jayme will be spending a lot of time here at the hospital visiting with Ethan, while my mother stays up here with Loryn. On Monday, I will return to work, so that I can retain the vacation days I need to take off and help Jayme whenever Ethan is better and ready to come home.

Thank you all for your continued thoughts, prayers, and well wishes. and we will keep the updates coming as we learn more.


Eric, Jayme, and Loryn Steinbach