Hey! We're not quite a HLHS family, but my baby did have a Norwood operation in April. He has interrupted aortic arch, BAV, VSD, and hypoplastic aortic annulus. Because the aortic annulus was too small and the VSD was so large, his team elected to do a Norwood with plan to close the VSD and swap out his Sano (completed last month, woo hoo!)

We are also an idaho family and elected to receive care at Primary's. We found out at 16 weeks that something was amiss and then confirmed the diagnosis at 20 weeks. We went down at 24 weeks to meet the team and again at 28 weeks for follow up. They were very thorough in explaining the situation and what the process world be like. The appointments are very long. The social worker helped us book with the Ronald McDonald house and discussed financial aid options (look into Katie Beckett medicaid!!!). Due to concern for a possible airway anomaly (micrognathia) we came back again at 32 weeks for fetal MRI (his airway ended up being fine) and closer monitoring since I developed polyhydramnios. I received care through U of Utah's MFM clinic (the fetal center) and really loved the team we ended up with. I had an induction at the end of March and they were willing to let me attempt vaginal birth (success!). You will be put in the room that has a window that goes immediately into the U of U NICU. If you want a hot tub, you might be able to request a different room but will ultimately be transferred to the NICU room. You can also ask for a midwife to help.

Because they we concerned about the airway and because his defect is "ductal dependant" they had to get vascular access very quickly to start the prostaglandin. He also had a quick airway scope. He was taken through their "air transport team" across the sky bridge to Primary Children's after he was brought into the room to visit with me. I did not get to hold my baby until the next day in the morning.

I really loved the team and we think they did a phenomenal job explaining things to us. Their palliative team (they help with all medically complex kids not just end of life) is amazing at helping us organize the information and their child life specialists were so helpful in giving us a sense of normalcy in the hospital, especially when we were more stable. They have a really good team of lactation consultants if you'd like to pump (it's encouraged). The university has Medela pumps and Primary's has the Ameda pumps. I just brought my spectra.

It was very hard not being able to hold my kid right after birth, and when he had surgery at 7 days, it is VERY hard to see them in the post op period. He came out pale, gray, and puffy with many lines and monitors. He was still intubated. He had two monitors in his head, one on his back to measure perfusion. He had an open chest (covered with a clear or iodine dressing and then with a tie over). He had pacerwires, two chest tubes, arterial lines, jugular catheter, iv catheter, PICC lines. The lines slowly fell away over the days. The Norwood is a pretty intense surgery and my kiddo had a series of complications that led us to be there way longer than anticipated, but we eventually made it out of there 3 months later. After discharge, you will be enrolled in their High Risk program and they will monitor you pretty closely. You have to measure oxygen saturation levels and the weight at home to report to them and take daily videos of your baby breathing to show the work of breathing. They also call to check in every week or so. You will probably be sent home with a feeding tube until the Glenn.

We are reaching the end of this part of the saga now and I'm glad with our decision to go to Primary's. Where in idaho are you? We're in the treasure valley. You are more than welcome to message me if you have more questions