No Better, No Worse

I went to the doctor yesterday and we haven't had any real significant changes. I'm glad nothing has gotten worse but I was hoping for more good news but I can't really be picky now, can I?

 We still have low normal amniotic fluid but now she has some fluid in her abdomen. We think her bowel may be seeping into her stomach, but aren't sure. If your or my bowel were to burst or seep into our stomachs it would be fatal but since everything in the uterus is sterile it means that everything in her bowel was sterile and will not hurt her any worse. To quote our doctor "I wish we hadn't seen this but it isn't horrible. We need to be flexible because her condition can change and we need to be ready and prepared to change our plan after every appointment if need be." That scares me, because I'm a planner. I like to know things as far in advance as possible so I can plan for it but it doesn't seem like that is going to be very possible here. I will have a basic plan but may have to shift it up all the time.

 Her brain and heart are still doing well. She's all stretched out in me and not as squished anymore now that we have fluid surrounding her. Our doctor says the amount she moves around is great and I have no signs of preterm labor. Which is good. We were told now that she has to be at least 4 1/2 pounds probably to be able to be operated on. She cannot come prematurely or that is certain death. Our doctor is going to call our Neonatal Surgeon and ask her the smallest baby she would work on with this condition. I will be having a scheduled C Section and we're hoping that it'll be around 36 or 37 weeks. We don't want my body to go into labor because that could put too much stress on Avery so I can't go much farther than that.

 We have switched to weekly appointments now, which means weekly ultrasounds. We want to be able to monitor Avery more closely and see everything that's going on. We think too much is changing every time with seeing her bi-weekly. So every Wednesday now I should have some sort of news which I'm glad about. I hate not knowing what is going on with the precious child that I carry with me every where I go.

 We have our first meeting with our neonatologist on Monday as well. He is the man who will be in the operating room while I give birth and as soon as she's born he will take over. He will check her oxygenation, do anything she may need to keep her alive. We were told if her lungs are not developed enough we may be able to give her ECMO (Extracorporeal membrane oxygenation.) I really hope she doesn't end up needing ECMO but it's a good option if she does. Please pray that her lungs develop enough that she won't need the ECMO machine.

 ECMO is a machine that takes out all the blood in her body slowly and will pump air into it and filter it back into the body. It's basically a lung bypass machine. It's not a permanent solution at all but it may be what she needs during surgeries and recoveries to give her lungs a break and let them keep developing. While a child is on ECMO they are kept asleep most of the time so they do not move around and rip out the tubes going into the large arteries of the neck. We will not be able to hold her while she's on ECMO and it is a pretty dangerous option but if it's all we have to save our child, it's what we will do.

 Soon we will meet with our neonatal surgeon as well and make a plan with her too. After we have a plan with all 3 of those doctors they will work together to make a plan that best suits Avery and her care. The Neonatologist will only be her doctor initially, once she is stable whether that be 5 minutes or 5 hours after birth she will be taken by helicopter over to Phoenix Childrens Hospital where her Neonatal Surgeon works and she will take over from there. All while I'm left in another hospital recovering from surgery, without her. I'm very scared for this but I know it's necessary to keep her alive.

 Thank you everyone for the continued thoughts, prayers and comments. They mean so much to me. I like knowing that people are reading my blog and thinking about my precious baby and hoping for her life. I'm very conflicted with how I feel now, I'm happy that my daughter has a chance and I cling to our glimmer of hope but I'm terrified about all the "What if's" and "Maybe's" I just want to know the outcome and know that my baby is okay, but I can't know that. I have to live this with no real certainty and that's horrifying. I'll update more soon, please keep up all your thoughts and prayers for Miss Avery! Pray that her lungs are developing, Pray she will live, pray that I keep having amniotic fluid, and pray that the fluid in her stomach does not get worse.