Neonatology Appointment

Last week and yesterday we had ultrasounds to check on baby’s health. Everything they measured is looking good! (growth, blood flow, etc.). They haven’t been re-measuring the lungs or the mass in baby’s chest, so will just have to wait until she is born to see if the sizes have changed.

Yesterday we had the big appointment that we’ve been looking forward to/anxious about for months. We met with one of the neonatologists, along with his fellow and the social worker. The neonatologists are the doctors who will look after our baby once she’s born, so we were really looking forward to hearing what their plan is and getting a chance to ask our questions.

We found out that I will be delivering in an operating room so that baby can be immediately taken into a stabilizing room which will be connected to the operating room. There will be 8-10 people there just for the baby (doctors, nurses, respiratory therapists, etc). As soon as she’s born they’ll take her into that room and intubate her so she can get some form of breathing support. She’ll also get different IV lines put into her belly button to give her medications and to draw blood. She’ll have another tube connected to her stomach to immediately prevent it from filling with air and taking up room in her chest. We need all the room we can get for the lungs to be able to fill with air. She’ll be given nutrition through her IV at first and eventually will be able to take breast milk or formula through that tube to her stomach. The big thing will be seeing if her lungs can start to work (with help from the machines). This initial “stabilization” will take about an hour.

There is a chance our baby will not do well during this stage and only make it a few hours. From our understanding though, if she makes it through and especially makes it to surgery, her chances will go up. They will be ready for surgery anywhere from 3-14 days after she’s born, depending on how she’s doing. The surgery is to fix the big hole in her diaphragm with a patch and put all of her organs back in place. The neonatologist predicts that if she makes it, she’ll have about a 10-12 week NICU stay.

Another thing we learned from this appointment is that the neonatologist has some worries about the CPAM (the other unknown mass in baby’s chest). He worries that once they start helping baby to breathe, this mass will fill with air and burst, filling her chest and abdomen with air. But he said they will be on the lookout for this and will try to drain it right away.

There is a final resort type of treatment called ECMO which essentially takes the blood out of baby, oxygenates it, and puts it back in her body. This is risky and intense but can be a type of temporary treatment for CDH babies. McMaster doesn’t have this so we wanted to know what would happen if baby needed it. The doctor told us that Sick Kids in Toronto has this and babies can be transported there if needed.

It’s so funny how your expectations change. When we first found out our baby had the CDH, I was so sad about not being able to hold her right away, not being able to breastfeed her and seeing her hooked up to so many machines. Those things are obviously still sad and scary to me, but I’ve had so much time to get used to the ideas. I now just spend my time worrying and praying about her doing as well as possible and having doctors who are able to make the right decisions at the right times.

We have less than 2 weeks now until our induction date on Jan 22! The doctor did mention again that the NICU can get very full and if the 22^nd turns out to be a really bad time for the NICU, things might get postponed.

Continue steadfastly in prayer, being watchful in it with thanksgiving. – Colossians 4:2