26 weeks

Brody riding his "horsie," - right before Lola launched him!

Hi everyone,

Today was another round of appointments and it went MUCH better than last time. First, I had an ultrasound, then met with the high-risk OBs, then with a neonatologist who will be in the delivery room. The ultrasound went well - the baby is still growing well and they confirmed again that it is a girl - 3 ultrasound techs have said that so I think it's okay to paint the nursery pink. She is measuring at 25.3 weeks and I am 26.1 weeks today which is right on track. They estimated her weight to be about 1 pound, 12 ounces which is in the 44th percentile, again right on target. They get these estimates by measuring her head circumference and her abdominal circumference, which is probably slightly smaller than would be expected because her abdomen is growing without a big portion of her intestines in it. Everything else looked fine - intestines are not dilated so far which is good news. They tried to get us a 3D image of her face, but she was hiding behind her hand (see 2nd picture below). I know it's hard to tell, but the bump in the middle is her nose, under that her lips. The bumps on the sides are her hands - as if she is playing peek-a-boo. The last picture is of the bottom of her foot.

Next, I met with the high-risk OBs who gave me a better idea as to what to expect as far as the monitoring I would be receiving. The doctors explained that the risk of stillbirth for babies with gastroschisis is 12% which is really high and very scary and hard to hear and think about. They don't know why this is so high so to prevent this from happening they will be doing a lot of monitoring of the baby through non-stress tests (looking at the frequency of her movements and heart rate during), ultrasounds, and bio-physical profiles, starting probably around 34 weeks (end of May) as long as my next ultrasounds look okay. If on any of these tests they see any indication that the baby is in distress, they will induce earlier than planned. Basically they said that we should plan for the baby to arrive somewhere around 36-39 weeks which puts us in mid-late June. 

The last appointment was with the neonatologist, Dr. Vats, who was very nice and answered all of my questions. A lot of what she told me was hard to hear, but she was reassuring with a lot that she said. Immediately after the baby is born the team of the neonatologist, pediatrician, and NICU nurses will cover her intestines with a sterile gauze then put her in a type of sack to protect her from infection. They will also place a naso-gastric (NG) tube to bring up any bile that can't make its way through her gut. She said we would then be able to see her, but probably not hold her. Shortly after that, they will take her to the Magee NICU where they will place an IV line and start her on antibiotics. Then the baby will be taken to Children's Hospital where the surgeons will be waiting to take her to the OR. At that point the surgeons will decide if they can do a primary repair (put all the intestines back in right away), or have to do a staged repair (put a silo, or bag, over the intestines and push them back in over the course of a few days). They will do whatever operation they decide upon and also place a central line through which the baby will receive Total Parental Nutrition (TPN - food through her veins) until she can take oral feeds. She will be intubated and how long she stays like that depends on which repair she has and how much pressure is on her diaphragm when they put the intestines back. More hard info to swallow was that she will be sedated/immobilized for the first few days, again depending on the type of repair. After her intestines are put into her abdomen and she no longer has bile coming out of her NG tube we will be able to begin oral feeds at a very slow pace. As I've said before, there are a lot of unknowns until the doctors can physically see her intestines and the size of her abdominal cavity so a lot of this is all case-by-case. Dr. Vats did say that our baby's gastroschisis does not look like anything that should be unusual and she anticipates a good outcome. She also said that it is a good thing that the bladder and stomach are inside the baby as she sees babies do better when they just have intestines outside which was helpful to hear. 

Overall, long day, but at least my questions were answered and I have a better idea as to the plan. Tom was not able to come with me because he is really busy at work and needs to save his days for when the baby gets here. Brody spent another fun day with his Aunt Amy and Uncle Craig (thank you again!) building forts, going for rides in laundry baskets, and dumping toys all over the place. My next ultrasound is in 4 weeks on April 29th so I will update again then. Thank you again for all the thoughts and prayers - we really appreciate everyone's support.