- You are the parent. You know your baby the best, be confident in that. You are the one constant among rotating nurses, doctors, specialists, and managers. Take the best parts of each person who interacts with your baby and try to carry it over to the others.
- Listen to anything the nurses say about ways they've calmed your baby. They have a lot of experience and may have thought of something you haven't.
- Knowing ways to calm your baby (and speaking up about it) helps with new people - including new nurses or technicians who are running tests or procedures on your little one.
- Be nice. Firm, but nice.
- Don't be afraid to call and check in. You're not bothering anyone, and you deserve updates on your baby.
- If your nurses are chatty, talk to them. The more they get to know you and your baby, the better. If the nurses aren't chatty, still ask them any questions you have. We always started with "how's he doing?" when we visited. This got us up to speed on any recent issues, if he was eating/sleeping/pooping well, etc.
- Always ask for what you want. If you want to hold your baby - ask. If you want to take care of your baby by changing diapers or taking temperature - ask. Some nurses are more proactive than others asking what you might want. It's up to you, and the worst that happens is the nurse advises against it and tells you why. We didn't ask to hold Obie as much as we should have in the beginning. We were worried it was too much trouble and was disturbing him too much. We should have at least had the conversation more often.
There were more people involved with Obie's care in the NICU than we could hope to remember. A big team of doctors and nurses, nursing managers, receptionists, social workers, specialists, technicians, respiratory therapists(RTs), lactation consultants, geneticists, and plenty we've surely forgotten. Some of these people made a real impression on us and we wanted to share a little bit about them.
- Obie's most frequent dayshift doctor was Dr. H. We were very lucky to have him as he was gentle and kind. He was the one who requested the cranial ultrasound and subsequent MRI, and he was also the one to tell us about Obie's full diagnosis. That was going to be a terrible moment no matter what, but Dr. H. was empathetic and also straightforward in what the diagnosis meant. He was patient with our initial questions and our follow-up questions over the next few days.
- Dr. S. ended up being Elizabeth's favorite doctor. She suggested Obie's field trip to the courtyard and made it happen. She was also the doctor who extubated him. She was very understanding with us on the timing of extubation and release from the NICU. One of the nurses mentioned to us that Dr. S. was fantastic with end-of-life considerations, and that was very true. She told us it was important to make memories with Oberon, and she was right.
- Dr. K. was probably the most straightforward on the team. Sometimes too much, but sometimes it was what we needed to hear. It was good to know there was someone who was giving us the facts and not sugarcoating or omitting the scary possibilities.
- Dr. A. was the only one we referred to by first name. She seemed younger, and also had a hard to pronounce (or remember) last name. She was very sweet and chatted with us at Obie's bedside on some of our late nights. Dr. A also worked through Obie's discharge plan and paperwork. She was extremely compassionate while going through the DNR paperwork, which was difficult, but necessary.
- Dr. W. was Obie's first doctor. She got him over to the NICU and ready for surgery. She was very straightforward.
- Dr. Craniofacial Surgeon (can't remember his name) came to talk to us once the Beckwith-Wiedemann diagnosis was pretty clear. He talked to us about potential tongue-reduction surgery down the line and how he's done a lot of work with BWS kids. He made us feel more comfortable with the BWS diagnosis knowing that there was an expert close by who had dedicated a good chunk of his career to kids like Obie.
- Dr. Su. was Obie's surgeon. She explained everything and was also patient with us. We had met her over the phone months ago, and she was just as nice then. She stopped by to check on Obie multiple times after his omphalocele surgery, which went really well. She also made him his cute little belly button.
- Night Nurse R was one of our favorite NICU nurses. She was part of the delivery team, so she met Obie on his birthday. She also cared for him many other nights. She was compassionate and helpful, and made sure Obie had the best of everything. She fixed his respirator placement (along with an RT, of course), got us hand and foot prints, let our family visit with Obie (and have videochats), and cleaned him up for his photo shoot at the hospital. She gave excellent care to Obie, and it was obvious that she cared a good deal about our little bug.
- The only labor and delivery nurse we really remember was Nurse A. She was the one there for Obie's birth, and she made sure Elizabeth got a private room for recovery.
- Nurse Jn was extremely nice, and also very competent. We trusted her immediately.
- Lead Nurse J took a little warming up to. At first, we weren't sure how to respond to her, but after a few days we grew to really appreciate her. She was very protective of Obie and piped up whenever specialists were coming around.
- Night Nurse J was actually one of Elizabeth's post-natal nurses too, but we didn't see her that much then (because we were in the NICU). She made Obie's scrapbook page for his shelf in the NICU. We saw that other babies had one, and were so excited the morning that Oberon's showed up.
- Nurse Jc was Obie Xmas nurse, and we are so thankful for her. She was excellent with Obie, and made sure that we had everything we needed to feel comfortable bringing him home.
- Nurse K only had Obie for a couple days, but she made a real impression. She helped us learn a little bit of baby massage, took Elizabeth around to various courtyards to scout a photo shoot location, and gave us some very poignant advice.
- Nurse Manager C. helped admit Obie to the NICU on his birthday. While we didn't interact with her too much, she really looked out for Obie and for us, giving us the green light to stretch the rules about number of visitors and visiting Obie during shift changes so that we could spend more time with him. She also worked out an issue with Obie's prescriptions when the pharmacy kept screwing them up, going so far as to pick them up for us so we didn't have to leave Obie again.
- Our social worker most of the time in the NICU was I. She was very compassionate and helpful throughout our experience. We met her before we knew the extent of Obie's problems, she was there when we found out, and we saw a lot of her as we prepared for Obie's discharge to hospice care. Her job must be so tough, but she was gracious every time we talked to her - even when we were less than composed. She let us use one of the private rooms when we told our immediate family what was going on with Obie, she found a funeral home that fit our needs and made the initial call while we were still in the hospital, and she gave us a lot of grief support information. I don't want to think about how much worse the experience would have been if we didn't have her help.
Obie loves Tummy Time
There's an Obie smile under all those tubes and wires!
Race Car Driver Obie.