7/31/14 - Thursday
26w4d - Still chillin' at the hospital. Mom & Dad both come when they can, before work, lunch time, or after. My lovely friend, Alison, came to visit yesterday afternoon. She's just 3 weeks behind me on her 5th baby, so we've been prego buddies. It's been nice having visitors. It's no secret that I'm a social person! Bed rest and the hospital have been hard, but visitors have made it bearable.
Yesterday they had time to get me in for my ultrasound at Maternal Fetal Medicine. I called mom right away, and she met me down there. My amniotic fluid looked good, measuring normal. They didn't measure Sara's growth, they'll do that in 2 weeks. Dr. G found that Sara now has fluid around her heart (pericardial effusion), and around her lung (pleural effusion), which officially means Hydrops. :( Her cystic hygromas look the same as last time. The Hydrops is really concerning. She also explained to us that Hypoplastic Left Heart Syndrome (HLHS) is on the very severe end of the complex Congenital Heart Disease (CHD) scale. Combine that with Hydrops, and her prognosis isn't looking great. They will start doing ultrasounds every week to monitor the fluid. They still think it will be valuable to meet with the Primary Children's cardiologists, so I will still go to my appointment tomorrow, if I get discharged in time. They should be able to give us more information regarding her specific situation. They also want me to speak to a neonatalogist here at UVRMC. If my placenta detaches all the way, or if Sara's heart rate takes a dive and she needs to be delivered soon, they will keep us here at UVRMC. Dr. S (another perinatalogist) and Dr. G agree that if that happens before 32 weeks, then they'll keep me here, if after, then they'll send us to UofU/Primary's. It will be good to talk to the neo and find out what will happen if she's delivered here, early.
I got to talk to the boys on Google Hangouts tonight. It was SO AWESOME! I love seeing their cute faces, and glad that they remember me. :) Oh they are so adorable. They've been having a blast at the Turners'. Clark said he doesn't want to leave. Lol. Their cousins & aunt/uncle are spoiling them and taking them fun places. I'm so glad they're having a good time with people that love them.
Just talked to the neonatalogist, Dr. R. He agreed with Dr. G & Dr. S, that if Sara is born before 32 weeks (for whatever reason), she will not be big enough to do surgery, so we will stay at UVRMC. She will not survive without surgery, so she will certainly pass away. I think we would just want to spend as much time with her as possible. I don't think we would want the NICU team to come in and take her away, poke her and prod her, knowing she won't make it. Unfortunately, HLHS is 100% fatal without surgery. I'm glad I got to talk to him and ask questions, as hard as it is. We just want to keep Sara in utero as long as possible.
I have such mixed emotions right now. I don't really know what I am hoping for. Surgeries and a normal life might not be an option, given the Hydrops mixed with the HLHS, but if they are - that is going to be a really rough road, and have a good chance of not being successful and for us to lose her anyway. I don't know that I want to put her little body and life through that. On the other hand, I want to give her every chance we can. Wow, this is some really tough stuff.
I really hope that we can make the best possible decisions based on the information we have, and the revelation that the Lord gives us. I know He loves us. I know He is aware of us. I know He will bring peace to our minds and hearts as we continue to go through this, as He already has.
I am so grateful for the knowledge of the gospel.
Now some hospital selfies:
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