30 Weeks

The baby is in great health. She is 3.5 pounds, growing normally, and swallowing and recycling the right amount of amniotic fluid. The doctor said that the cyst did not grow in the last couple weeks (great news!) and there's no indication that the baby is having anything but a very normal fetal development period. Doc said "she has no idea that this cyst exists" so it's not causing any discomforts, which is a HUGE relief to me. The worry that she feels discomfort or pain has haunted me.

With that said, the doctor said that what they can't see now is her trachea, the air tube from her mouth to her lungs. They are having a hard time since she is so little seeing the exact place where the cyst meets with the top of the esophagus, near the trachea, so there's a possibility that the baby may have breathing troubles when she is born if the cyst is attached in such a way that it interferes with the trachea's functioning. In the past, when these kinds of cysts were not identified in utero, they were identified after birth because of babies' respiratory problems. The doc said they are not concerned about her wellbeing in utero since she is getting oxygen from me, but they will have to monitor to learn more what might come up after she's born. It's a big wait and see.

One possibility she talked to us about today is an EXIT procedure. EXIT stands for Ex utero Intrapartum Therapy where they start to deliver the baby by c-section, but while the baby is still attached to the umbilical cord, they perform surgery on the baby to clear her airway. That way the baby is secure with oxygen from me via the umbilical cord while they take care of any airway problems. Then they cut the cord and she is fully delivered. CHOP docs have been doing this procedure for some years now and they are some of the pioneers of the surgery. She said that they should be able to know whether me and the baby will need this procedure at about 32 to 34 weeks (that's 2-4 weeks from now). Hopefully, it won't be necessary but it's something for us to learn more about just in case.

All along, I've been very much aware about how unique our baby is--her cyst has confounded doctors or at least represents something "interesting" they've never seen before. Even during today's visit, the doctor said: "has anyone told you how interesting your baby is?" My husband and I said: ummm, duh, yes. Even so, the possibility of this kind of a procedure, so very rare, feels a bit SciFi to me. Just pondering the word intrapartum feels strange. Prepartum, okay, postpartum, even better...but intrapartum? There's not supposed to be any in between for babies! Just outside or inside! Well, not for Little. She's very special, and she may traverse a layer of the universe the likes of which none of us have ever seen. Special little baby.

We saw the delivery unit at CHOP. It looks VERY nice and the staff were wonderful. They were very welcoming, all rushed to say hi and make jokes with us, so very friendly and loving. We really enjoyed everyone we spent time with today. CHOP really does have a special staff. It's certainly a perk of all of this--getting to deliver in a brand new facility with big rooms, excellent equipment, a pull out bed for my husband so he can spend nights (it's shocking that this is not a guarantee at most birthing facilities). And I've tasted the cafeteria food there--definitely not bad!

We also met with the lactation consultant who is an internationally-known PhD in breastfeeding science, especially for high risk situations. I actually met her in past work I did in maternal and child health policy studies I did in grad school so it was a bit funny sitting down with her as our provider. I was a bit star-struck. Lucky us!

Anyway, at CHOP they have developed a process of breastfeeding activities to ensure that the baby will get all the benefits of breast milk even though she likely won't be feeding from the breast right away. This process has been published and it's being copied at hospitals around the country. We're working with the best, here, people! Anyway, I will start pumping right away and staff will maintain and label my bottles and number them, and as soon as the baby is able to start drinking herself, they will feed her the bottles in the same order I pumped them so that she'll have a natural progression of breastmilk benefit as she would if she were feeding from the breast. Apparently, even the order of feedings is ordained by nature to provide the best early benefit to the baby--among the first servings of colostrum, there are many antibiotic properties that are meant to be fed to the baby in a particular order. It's pretty amazing. The staff at CHOP also provide support and therapy of sorts until the baby is drinking from the breast herself. We also will do oral care with breast milk, rub the baby's mouth with it so that she gets some of the early benefits even if she can't drink it yet. They even worked with Medela, a breast pump manufacturer, to develop a specific pumping suction pattern more suited to babies who are premature or have some illnesses or health care issues and can't feed from the breast immediately. So I'll get a pattern of pumping that works hard to really get everything it can out of me and get as much breastmilk as possible to Little. Wow, right?