Stanley wakes up early (before sunrise) with hiccups. He has such a calm, relaxed spirit, curiously taking in what he notices around him. He’s making little “talking” noises. It’s amazing to watch!

The sun rises. Another day. It’s surreal to be in this moment where we now are figuring out what to do, but we’re loving it.

A member of the palliative care team enters our room. He listens to our story, spends time with us and Stanley, and tries to understand our perspective. We appreciate his friendly support! He takes time to tell us what to expect, that a lot of children with Trisomy 18 pass away suddenly from Central Apnea, meaning in his words that they “just forget to breathe.” So far there hasn’t been any sign of that from Stanley.

The nurses come in and ask whether they can do a blood sugar test. We agree. They come back having determined that his blood sugar levels are alarmingly low (29% if memory serves) and they once again suggest we move him to the NICU, as they had offered before. However, we know that this will entail significant discomfort for Stanley and we are reluctant. They explain that – because of their protocols – we will have to choose between full care (in the NICU) or essentially hands-off comfort care. The man from the palliative care team listens with us, knowing that this is an exceedingly difficult decision. We discuss it, and reaffirm that we do not want him to spend his short life separated from the love of his family, trapped under a maze of wires, tubes, and monitors. Ultimately, we respectfully decline placement in the NICU, reiterating our decision that he be kept comfortable and with us.

But we do need to give him more nourishment than we’ve been able to deliver with the preemie bottle. He hasn’t been able to take feedings properly because of his low muscle tone, small jaw, and mouth. Using the preemie bottle, Stanley had been spitting up a lot last night, so up until this point, we weren’t sure whether he was getting enough, or too much. It’s also been hard to control the flow properly. So what now?

A nurse suggests a feeding tube may improve the situation. We’re willing to give it a try. However, when the nurse is unable to get the feeding tube to go through his nasal passage, causing him to cry in pain, we ask her to stop and we abandon the effort.

We come up with another idea: Dad uses scissors to snip the end of the feeding tube off and leave a little one-inch stub of the original long tube on the end of the syringe. With this, we’re able to directly drip feed him much more effectively than the preemie bottle. Stanley seems satisfied and is drinking a lot more, so we consider this a success!

The difficult part with comfort care is that we can only go off of what we can observe; we don’t have high-tech monitors to read Stanley’s vitals. Still, it’s worth the risk because we realize that he may never come out of the hospital if we send him to the NICU. So choosing to walk the journey with him through the comfort care route is the best way. He’s doing very well — unbelievably well. Stanley is a real trooper!

Now that our decision has been made for comfort care, our time at the hospital is drawing to a close. They plan to discharge us tomorrow! The reality of that is overwhelming.

Discussions with the medical team are frequent as the hours pass. We have to retell our story multiple times and discuss options over and over. This process is stressful, exhausting, and emotionally difficult, yet necessary. We can tell that everyone wants what is best for Stanley and are really struggling to determine what the best course of action could be. This has been another day filled with blessings amid many concerns, but it is impossible to forget that Stanley’s Trisomy 18 and his heart condition are cold facts of his life that aren’t going away.