Play by Play Of My Procedure.

I had my procedure/surgery on Friday. I had to start fasting completely 8 hours before the procedure which doesn't seem like it'd be hard but try telling a pregnant girl she can't eat or even have a drink of water all day. I don't know if it's a normal pregnancy symptom but I get incredibly dry mouth and have to drink water all day, is torture. Being that my surgery wasn't until 3:30 in the afternoon I was dying of thirst all day long. We were told to get to the hospital 2 hours early so at 1 we packed up the car with my overnight bag and all our paperwork and Ethan, my mom and I headed to the hospital. When we got there and got to the L&D Triage floor where you check in a doctor was there asking if I was there yet, saying they were ready for me early. They signed me in and said only one person could come back to triage with me so my mom went to the waiting room and Ethan and I went back into the pre-surgery triage area. Immediately they had me leave a urine sample and change into a hospital gown, by the time I was done with that they were back asking questions and hooking me up to the doppler to hear her heart rate and taking my blood pressure and all the standard hospital things. Everyone always complains about the hospital taking forever and having to wait around but we didn't wait for even 5 minutes.

 After they got the initial things they came to give me the second shot for her lungs and brain development. Then they started my IV and took 6 vials of blood and hooked me up to a huge bag of saline.  They kept asking questions and feeling my stomach to find her body and asking if I was in pain or had any signs of labor. Then the anesthesiologist came in and said that he'd never seen one of these surgeries but one of the OB's said to give me a spinal just like a C Section and something in my IV to keep me calm and warned me that I'd probably be sleepy. I said that was fine and we shook hands and he said he'd see me in the OR. Then came in Dr.Solomon (my perinatologist) she said she'd gotten their early and was ready to go. She had the shunts in a bag in her purse and said she wanted to go talk to all the other doctors. Then came in the neonatologist saying that if we went into labor he would take her and do everything he could to save her. Then came in the OB that would be doing the C section if we needed one and she introduced herself and made some small talk. Then came in a medical student to explain all the risks of a C section and all the risks of this procedure and make me sign papers. More nurses came in and were giving me antibiotics in case of infection in the IV, and pumping me full of medicines. One nurse came and gave me 3 medicines I needed before a spinal, one I can't remember the purpose and two were so I wouldn't throw up. Two of them went into the IV and one I had to drink, it was the most foul tasting liquid ever especially after having such a dry mouth all day. More doctors and nurses came and talked to us about everything they were doing and everyone we would see. The neonatal surgeon came in and said she still thinks 33 weeks is the best but if anything were to happen she would try her best and no matter when Avery is born she will try her hardest. While all the doctors were talking I got this reaction to one of the medicines they put in my IV and my nurse said it was a really rare reaction but she'd had it before and knew how horrible it was. I felt like I was going to jump out of my skin. I couldn't hold still my legs hurt and and I was incredibly anxious. She said to try and take deep breaths and that is lasted about 20 minutes. I could barley focus on what people were saying to me and I just felt horrible. The nurse came back with IV benadryl (which works way better than the pills you take at home) and within 5 minutes it did start to calm me down and make me feel less anxious and jittery. I was so glad she'd had the reaction before so she could empathize with me and knew what to give me, I was already so nervous to have the surgery the last thing I needed was this reaction going on for 20 minutes.

  Dr. Solomon came back in at this point and asked Ethan and I "If we're in there and fetal distress starts and we can't stop it. What do you want us to do? Do you want us to just leave you here and most likely she will die and then induce you to have a stillbirth or would you want us to bring Ethan into the OR and have an emergency C Section and try to give you a live birth. There isn't much we could do if she was born alive she's too tiny and would probably die but you would have a better chance at having a live birth, though it could still be a stillbirth." We knew this could happen and that it was a possibility of having this procedure but hearing them say it like that really freaked me out. They said there was about a 20% chance (maybe less) of this happening but it was always an option and we needed to decide now before I had all the pain meds and we were in the middle of a crisis situation. I got really overwhelmed and started to cry a little bit but Ethan and I agreed we wanted every chance of having a live birth so agreed on the C Section.

 They said they were almost ready to go into surgery then, we'd been there for 2 full hours and didn't have more than 2 minutes of a breather. I asked if I could switch out Ethan for my mom so I could see her for a few minutes before they pulled me into surgery and one nurse said we went right past the waiting room and they would stop and let me see her. The doctor chimed in that they could sneak her back there for me without taking Ethan out and a few minutes later she and my Grandma showed up in the room. I asked for a few minutes to talk to them and we all nervously chattered and I caught them up on the last two hours they'd missed. After a few minutes they came in to get me and we all caravanned to the OR (or for Ethan, my mom and my Grandy they went to the waiting room.) While we were walking a nurse gave Ethan all the clothes to put over his clothes for the C Section and told him to put them on now so he was ready if they needed him, after that everyone I loved was gone and it was just the nurses and doctors and me. We stopped so everyone could get their scrubs on and so they could put a hairnet on me and the shoe booties on my feet even though I was barefoot.

 They got me up and had me walk into the OR, which looked nothing like I imagined it was. It was small and crowded and just nothing like I'd imagined or seen on TV. They put my "cocktail" as they called it into my IV and said it would make me woozy that it was a mixture of morphine, and a couple other drugs that I don't remember the name of and then they had me sit forward and hug a pillow and put my head on a nurses chest so they could give me the Spinal block. After that I laid back and everyone started rushing around to get ready. They set up the Ultrasound machine and all the tools, gave me oxygen, and one of the nurses was trying to make small talk with me. They put up the curtain so I couldn't see what they were doing to me and then said I'd feel pressure because they were giving me a catheter. Next Dr. Solomon came and told me that they were going to start. By now I was feeling pretty heavy. I could think clearly but speaking was hard and I felt kind of lost. The rest of it is all kind of jumbled in my memory. I remember Dr. Solomon showing the Neonatal Surgeon all of Avery's problems they've seen and people commenting on all the fluid in her tummy. I then remember a nurse saying I should try and close my eyes but I was too scared. They then said I'd feel pressure and thats when they did their incision and poked the large placing needle and shunt in. After that is when it got scary.

 All the nurses started rushing around and saying the cord was in the way, Dr. Solomon and Dr. Chambers (the OB) were saying "Come on baby move, we need a clear shot here." and the whole room got tense. The  anesthesiologist's assistant was trying to tell me a joke to get me to not listen to them but they were all I could hear. I felt like I was underwater, I knew something was wrong but I couldn't quite make out what was going on. I think it only lasted for a minute or two but it felt like a long time and then Dr. Solomon said "I'm going to need the second shunt. This one won't work." She took it out and put another needle and all the things they use to place the shunt back through my incision. At this point the Neonatal Surgeon came over to pet my head and tell me how great I was doing. She started telling me about who she operates on and that Avery was cute she saw her face on the ultrasound. I think I dosed off for a few minutes around this point and then when I woke up Dr. Solomon said she' had it placed. I guess another Doctor was going to tell my family it was looking good. They were still watching her to see how she was reacting on the screen and I guess her entire belly drained in about 5 minutes. Which they were not expecting so that was good. They said she went from looking like a pregnant person with water filled to a normal sized baby abdomen. They tried to make Avery move but I guess she was tired from the meds they gave me too. They said that was normal but they put something that vibrated on my stomach to try and shake her but she wasn't moving. They said it was okay and then started to clean up. I asked a nurse how long we'd been in there since Dr. Solomon told me before the surgery it should only take about 30 minutes tops and the nurse said it'd been an hour. I asked to see Avery and I guess they showed her to me on the screen and showed me her tummy which had no more fluid but I don't remember that much at all. I asked to have a print out of her face and they said they'd give me one.

They all put me on a board and lifted me to another bed and wheeled me to recovery. I'm not sure how long I waited or slept there. I remember the nurse handing me a copy of the picture of Avery from the Ultrasound and saying the doctor would be in soon. Dr. Solomon came in and said it went as well as it could have. That the first didn't work because her cord was in the way but once they got that figured it out it went really well and drained great. That now we just needed to hope that two things don't happen. 1. Hope she doesn't pull the shunt out of her tummy sometime and 2. That it doesn't get clogged up with calcium build up since these shunts aren't made for this purpose and that there could be too much calcium that clogs it and makes it stop working. She said if that does happen we can always do this again but we'd prefer not to. We just need this to hold out for 6 1/2 more weeks and then she can be delivered and it doesn't need to be there anymore. She told me she was going to go talk to my family and then send them in to see me. Next thing I remember is my mom, Ethan, Grandy and Opa (what I call my grandparents) were all in there and told me that I did good and it seemed like it went well.

 I showed them the picture of her face and talked a little with them but I was too groggy to remember much and I'm not sure if the talking I did was making much sense at this point. After awhile there they moved me to another bed and wheeled me into the room that I would spend the rest of my hospital stay in. I took a nap and watched some shows and was constantly be poked and prodded at by nurses and they kept giving me more medicines in my IV. They brought Ethan a cot to sleep on for the night and after dinner my mom said she was going to go home. She said if anything happened to call her and she would be there immediately. Ethan and I watched some more TV and I just rested. They checked Avery's heart rate a few times and every time it sounded good.

 We got to go home the next afternoon and I was told just to stay on bed rest and lay low. Now I am here at home still having lazy days. I'm a little sore from the procedure but Avery is moving around like normal and I'm feeling better every day. We have a follow up with Dr. Solomon on Wednesday (they said we may start seeing her more than once a week now) to see how Avery is looking. Hopefully the shunt is still doing its job and she has no excess fluid on her tummy. I may have to stay on bed rest for the rest of my pregnancy they will decide that when we see how she's looking. For right now I sort of wish I knew how to knit or crochet or something to occupy my hands and time of all the hours I'm just laying here.

 So for right now I'm pretty happy with the outcome. Hopefully we get good news on Wednesday and it's working great, then I'll be really happy. Thank you to everyone who has written to me or asked how I was doing. Also thank you to everyone who prayed this would go well and thought about us during this scary time. Please keep up your prayers that this thing works and holds for the next 6 1/2 weeks until they want to deliver her.

Last Ditch Effort

Our doctor called us this morning and woke me up the first call said that we had an appointment with the neonatal surgeon on Tuesday. I said that was fine and thanked them for making me the appointment. About an hour later I got another call saying that our Doctor got off the phone with the surgeon and the surgeon said that she needed Avery to get to 33 weeks along before she had a good chance of operating and having Avery survive. Our doctor said she didn't think Avery would make it that long in utero without her heart stopping with all the fluid built up in her abdomen putting stress on all her organs. So they both agreed they needed to do something and that something would be putting a shunt through me into Avery's tummy and leaving the shunt in her until birth and that shunt will constantly drain any fluid in her abdomen into my amniotic fluid and that we needed to have that done tomorrow. I asked the risks and they said that we always have risks putting a needle into my amniotic sac (the risks being that it could break my water and put me into preterm labor or give her fetal distress.) They said that the risk in not doing it though is much higher than the risk in doing this, after a lot of thought and a long talk with my doctor I agreed to have this done tomorrow.

 They said that it would be at the hospital and I'll need to fast for 8 hours. We will go into the ER and our doctor, the neonatal surgeon and another OB will all be in the room and I'll get an epidural (most likely) and some laughing gas to keep me calm and we'll go through and insert the shunt during an ultrasound and try to drain the fluid. I'll be kept overnight for monitoring to make sure that I don't go into preterm labor and to make sure that she is okay and stays calm and happy. I will not meet the surgeon Tuesday anymore, I'll just meet and consult with her tomorrow. Doing this does not ensure she'll make it to 33 weeks alive but it gives up the best chance so we can have our C Section and have an alive baby that can go immediately into surgery. That is when they'll take out the shunt as well so it will stay in her the remainder of my pregnancy.

I then got a third call from our doctor asking me to come in today and get the steroid shot to help her lungs develop quicker and it also helps with the blood vessels in her brain. I agreed and went in and got that. It wasn't too bad of a pain, my hip and butt area were a little sore for awhile but I'm okay. I'll get a second shot of this steroid tomorrow at the hospital before my procedure. I'm terrified something is going to go wrong. Our doctor showed me the shunts that she has sitting on her desk waiting for tomorrow when she will meet us at the hospital.

 Please God just let Avery get through this, let her have no distress and let my amniotic sac accept it no problem. Let these shots help her lungs and let her little body hold on for the next 7 weeks and keep developing so she can be born alive at 33 weeks with no fluid on her stomach and strong enough to withstand surgery. I am terrified for my child's life. She's been through far too much and she isn't even born yet. I'm supposed to be able to be able to protect her from all pain and evil while she's in utero and tomorrow she will feel some pain with a needle being inserted in her tiny stomach. I'm so scared, I don't know what to do. I am doing everything in my power to keep this baby alive and it still doesn't feel like I'm doing enough.

 I go into the hospital at 1:30 tomorrow and have the procedure at 3:30 and then will be there overnight. It shouldn't take more than 45 minutes or an hour to complete this procedure and we should see the fluid start to drain immediately after inserting it. Please keep us in your thoughts and prayers. She needs to get to 33 weeks, she needs to fight this, she needs to live.

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.

Cautiously Optimistic

 We had a doctor appointment today and while we were driving there I told Ethan and my mom "I don't think I can take anymore bad news." I was just praying we weren't going to be hit with another blow.

 We got to the office and my Grandy (grandmother) met us there, they called us back to have the Ultrasound Tech do the first part before the doctor came in to give us a more in depth ultrasound, tell us what she saw, answer questions and hopefully tell us that we got good cells back from our Amnio. I asked the US tech if she knew anything about my DNA results and she said that she heard the baby was a girl for sure, meaning we got good cells! That was the first bit of good news.

 She started giving me the ultrasound and I said "Still no fluid..." knowing we wouldn't have any. The amnioinfusion I was given 2 weeks ago would absorb after 12 hours. She said to me "No, I see some fluid." As she went on she didn't say much, pointed out some features on little Avery and did a long ultrasound. We got a cute profile shot of her which we couldn't get without fluid. She told us how she remembered that last time I had literally no fluid and now she was seeing some. She went to measure the fluid (they measure it in centimeters) she told me I had 8 cm of fluid. That's the low side of normal. I was still low but we had an almost NORMAL fluid level! What could this mean?! She didn't know either... After she left Dr.Solomon came in and said "Well Olivia, your baby is throwing us another curve ball!" "There is fluid!" I said. She said that there was and started to explain that they are also seeing a bowel separate of her bladder now. She thinks that Avery has a urethra and she CAN pee. She still see's a blockage in her bowel so she thinks there is no anus but that can be built. She said that her heart has less fluid around it and is less enlarged and still looks good. Her left kidney is completely not working and never will but her right kidney looks to be normal and working perfectly. Her brain still looks great.

 The doctor said she is cautiously optimistic and that there is hope she may survive. It all really depends on her lungs. I'll most likely be having a scheduled C Section and 2 weeks prior to that I will be getting a shot to help her lungs along. It all really depends on her lungs. If she comes out with stronger lungs that is great. It's a long road ahead and she could still die but this is good news. She will need to have a lot of surgeries. They will need to build her an anus and clear her bowels, they may need to take out her one kidney that won't work (it could also just absorb in her body and not need taken out), She will need her one clubbed foot straightened out, she may need spinal surgery (It depends on how bad her spine is when she is born) and who knows what else... Her brain is perfect though and she has fluid so it's all dependent on me having amniotic fluid and her lung development.  They think there must have been some sort of blockage in her bladder and putting in fluid some how kick started something and made her pee. Thank God.

 Thank you for everyone who has been praying, PLEASE keep praying that Miss Avery's lungs continue to mature and that I keep getting more and more amniotic fluid. I am not expecting anything but I'm so much more hopeful. My baby girl is a fighter.

 I got to talk to a mother on the phone today who's son had Cloacal Exstrophy (which is similar to Cloacal Dysgenesis but not exactly alike) they didn't think he had a chance to live and he's 12 now. He's smart, his brain is perfect and he's darling. They gave me hope too. Lets hope Avery can do that too, that she can pull through.

 Here are the two profile shots we got of her today, she has her hand above her face in one and on her chest under her chin in the other. This little girl loves to have her hands in her face. Every ultrasound we've had where you can see her since the beginning of my pregnancy she has her little hands by her face.