2nd UCSF Appointment - NICU tour

Today we went to UCSF for my follow up appointment. I had another ultra sound and AJ is approximately 3.7lbs now. He is growing quickly! After the ultra sound we met with a social worker and a neonatal specialist to discuss the care for AJ after birth. I guess they have to be very upfront but it sure does sound hopeless sometimes when they talk. I realize my baby has a very severe CDH but it would be nice to hear just a little bit of hope. Towards the end of the conversation the social worker started to come around and sound more positive. I think they finally got the picture that I'm not trying to hear the negative. I know the odds and have mentally prepared myself. I now want to focus on what can be done to save my child!

When we toured the NICU, we were surprised. It wasn't as bad as we thought. I have spent so much time reading about CDH babies that are real sick so I was prepared to see them in person. There were two babies with CDH in the NICU today. One baby was on the ECMO. He was lying there lifeless because while on the ECMO, they give the baby medicine that basically paralyzes him so the lungs can rest. The other baby had been there for 10 weeks. He was born premature and only weighed 3.5lbs at birth. Today he was 7lb 4oz. and had a nasal cannula and feeding tube. He looked great! I was shocked that a CDH baby born so soon would look so good. I'm not sure the severity of either baby as the parents weren't present to ask questions.

After the tour I met with one of the fetal team members. Unfortunately they had two emergency fetal surgeries today so I didn't get to meet more of the team. We discussed the date I would come in to be induced, March 23rd at 8pm. Hopefully all goes well and I will be delivering March 24th. I will be 39 weeks at this point. I hope to stay in S.F. the week prior just in case I go into early labor. The social worker said I wouldn't check into the Ronald McDonald house until after delivery. I have to check with her again to see if there is any way I can stay the week before as well so I don't have to pay for a hotel. I'm sure it'll depend on availability.

 Here's a video clip of AJ yawning.


Definitions:

CDH - Congenital Diaphragmatic Hernia

LCDH - Left Sided Congenital Diaphragmatic Hernia

LHR - Lung to Head Ratio

NICU - Neonatal Intensive Care Unit

ECMO - Extracorporeal Membrane Oxygenation - A heart-lung by-pass machine that takes over the work of the heart and lungs.

NASAL CANNULA - A special tubing that is used to give oxygen through the nose, making holding and feeding easier.

NG-TUBE - Nasogastric Tube(aka feeding tube) - A plastic tube inserted through the nose into the stomach or intestines to aid in digestion when baby cannot eat by mouth.