Tour de NICU

This week I met with the neonatologists from St. Luke’s and Children’s Mercy, on Tuesday and Wednesday, respectively, . I also got to tour the Neonatal Intensive Care Units (NICUs) and talk with the coordinators about the NICU experience, visitation, etc. It was very informative and not as altogether unpleasant as I had been expecting.

St. Luke’s: I met with John Callenbach from the neonatology department and he outlined Boston’s initial plan of care. Because we do not anticipate any problems with delivery, he said I should be able to deliver in a normal room, as opposed to an operating room where there would need to be ventilators, more staff, etc. Once Boston is born, he will be immediately admitted to the NICU, although this is more of a paperwork thing than a location thing. Provided there are no imminent threats to his health, he should be able to “room in,” i.e., stay with me, any time he is not having tests done.

Pierson Syndrome is virtually impossible to diagnosis in the first couple of days because Boston’s kidneys won’t have kicked in yet and a lot of his numbers will reflect my physiology and not his. It also means that if he does have the syndrome, we are hoping to get to spend a couple of days with him before he gets seriously sick.

In the first couple of days, Dr. Callenbach anticipates monitoring his blood and urine for protein, doing an eye exam and an ultrasound of his head and watching his growth, eating patterns, and for any sign of swelling.

We do not plan on being at St. Luke’s for more than a couple of days. I hope that Boston can stay there until I am discharged from the hospital, which will be after 48 hours, or 96 hours if I have to have a C-section.

The visitation policy at St. Luke’s is extremely lenient on the mother-baby side and provided everything is going okay, the first couple of days will also be prime visitor time for those of you who want to meet Boston because once he is at Children’s Mercy, it is pretty much Baby Alcatraz and only two people can be by Boston’s side at a time and that includes parents, so if Brian and I are both there, no one else can be (more on Baby Alcatraz below).

Children’s Mercy: After our first couple of days at St. Luke’s, Boston will be transferred to Children’s Mercy for at least a week. We were hoping that if everything was going well that we would be able to go straight home from St. Luke’s with follow up at Mercy, but during my Wednesday meeting with Dr. Kilbride (neonatologist a.k.a. baby doctor) and Dr. Van de Voorde (nephrologist, a.k.a. kidney doctor), they told me that they wanted Boston to come to Mercy A.S.A.P. They said that it wasn’t safe for him to go home because even if he looked like he was absolutely perfect, he could deteriorate quickly, so it was necessary to keep him under close supervision for at least a week. They seemed kind of on-board with waiting until I got discharged from St. Luke’s, but they didn’t want a lot of testing done until he was transferred to Mercy. If he gets sent to Mercy right away, then I will have to get a day pass to go visit him there, not something I want to be doing so soon after he is born.

Once he is at Children’s Mercy, they will continue to do the same blood and urine testing and monitoring. They will also do renal function tests and likely an MRI and a test to look for other eye defects. If necessary, his treatments could include protein infusions, nutritional supplements, a drug to reduce any swelling, and antibiotics.

Our best case scenario, if he is doing absolutely perfect, is to get to go home from the hospital after a week or so. It is not uncommon for babies with mild nephrosis to stay for weeks and the more serious babies stay for months before going home, and some never go home at all.

So we are preparing for Children’s Mercy to be our “home away from home” for a while. I called it “Baby Alcatraz” because of their strict, albeit necessary, visitation policy. Only 2 visitors are allowed at the bedside, including parents, which means if I am there (and I plan to be there a lot), only one other person can be there with me. I can’t have both my parents there at the same time, and if Brian is there with me, then no one else can be there. However, I am sure I will welcome the company and be more than excited to share Boston with the world; I just want to warn everyone that this will be on a one-at-a-time basis.

The thing that upsets me the most about the visitation policy is that right now the NICU is on “Sibling Lockdown” due to flu season, which means Clark can’t visit at all. I am working through the sorrow of knowing that once Boston is admitted to Children’s Mercy and until the ban is lifted or he can go home, we will not be able to be together as a family. We will try and cram as much “family time” into the first couple of days at St. Luke’s as possible. I know that this will not be very long (if we get out in a week) but the ban may not lift until March, and if we are there long-term, then it will be very strange to not have Brian, Clark, Boston and I all together.

The NICU at Mercy is very open – the babies line the walls rather than being in their own rooms. So every few feet there is a baby with a couple of chairs in front of it. I plan on camping out in one of those chairs and becoming very well known to the staff. I can have water while I sit next to Boston, but no food. Breastfeeding moms get four meal vouchers a day to use at the cafeteria, which is directly below the NICU. They also provide “nap rooms” and showers to use during the day. Even though we are only going to be (for sure) there for about a week, I am reading about parents and the NICU, how much time to spend there, how to schedule the day, etc. I am planning on being home in the evenings with Clark from at least 5-8 pm, so we can maintain our usual schedule, and I am planning on sleeping at home, and the rest of it we will just figure out. There are no cell phones allowed in the NICU, so I will have to take regular breaks to get messages and send updates. There is a computer for parents’ use in the NICU, so I will be able to update the blog from the hospital (yay!)

I can’t wait to meet this little guy! Even though the beginning of his life will be unconventional, I feel better having a plan and knowing what to expect in the event of the unexpected. Let me know if you have questions; there is probably something I left out.