Gone Too Soon

We went in for our doctor appointment on Thursday to make a plan as to what we would do. We found out that Avery would not make it even until the next week in utero. We were told to go home and get our things and we would have the C Section that night. They would do everything they could to save her but they didn't think she would live. We were warned of all the risks of a C Section and told that even if we do the C section now she may go into distress during it and die before they pull her out.

 In total shock we went home, packed a bag, grabbed Avery's things and headed back to the hospital. We called and texted friends and family to ask for prayers. When we got checked in at the hospital we had my grandparents, Ethan's grandparents, my mom, and our doula there. Our doula helped us finish up our birth plan and hand it over to the doctors and nurses. After a few hours of prep we headed into surgery. Ethan scrubbed in and we had the plan that if they could save her Ethan would go off with her to NICU and my mom would come in to the OR to be with me for the end of the surgery. I asked them what she would look like so I could be prepared and they said for her gestational age (27 weeks) and her conditions she would probably be only about 1.5 pounds, 2 pounds if they were lucky. She would have a very distended tummy filled with fluid. She would be about 10 inches long. She would have peach fuzz all over her body but no real head hair. They also told me she may never cry because of her lungs being so small.

 After what felt like forever of getting me numb, and prepping for surgery they let Ethan in to hold my hand. We sat there terrified and on the brink of tears but also excited to meet our baby girl. After what must have been only about 10 minutes but felt like an hour they said "Okay, Olivia look up!" and over the curtain they showed us this small beautiful baby with a huge tummy and a head full of hair. She was covered in goo still and didn't look very happy. She pulled her arms up to her face and put her hands over her mouth (just like she always did in our ultrasounds) and she turned her head a little. She wasn't making any noise but she was just gorgeous. At 10:07 PM on Thursday September 25th, 2014 the most beautiful person in the entire world was born. They then handed her over to the Neonatal team to evaluate her. Ethan and I looked at each other, she was the most gorgeous thing we'd even seen in our lives.

 The neonatologist came over a couple minutes later and told us "She can't be saved. She has very little or no lung function. She isn't trying to breathe and her heart rate keeps dropping she's at 41 beats per minute right now and won't live for long. I'll give her some morphine in her mouth it won't shorten her live any but will help her pain and then bring her to you."  Our hearts broke but they brought over Avery in her swaddle blanket that we brought into the OR for her and handed her to Ethan. He kissed her and rubbed her head full of hair. We were tearing up but were also overjoyed at the sight of our baby. He leaned down and let me kiss her head and held her some more. The nurses undid my gown and said they could lay her on my chest for skin to skin.

 They set her down and my world stopped. I loved this baby SO much in utero and I didn't think I could love her anymore or love anyone anymore than I already loved her. They put her on me and I got this feeling, I can't explain it but I loved her so much. The most I've ever loved anything, maybe more than anyone in the world has ever loved anything or anyone. She was mine and she was perfect. She had the little hospital hat on and her swaddle blanket but we moved it over so she could lay her skin on mine. When we did that she started moving and trying to take deep breaths. She was taking small ones and her heart rate got higher. She liked being on my chest and hearing my voice. Ethan sat beside us as we held her and kissed her. I started to sing you are my sunshine to her and it made Ethan and I cry but she moved and she liked it. Ethan reached up and she grasped his finger and held on.

 They told us originally we couldn't have any cameras in the OR but because they thought she may die in there they went and got the Doula's camera from the waiting room and a nurse started taking photos. They let Ethan take his phone out too and we got a few. I let him hold her some more and we just laid there holding her and and kissing her over and over. They periodically were checking her heart rate to see if she was still alive but it was still there. They took her from Ethan and put her back on my chest after moving me off the operating table to the recovery bed and wheeled us down the hall into recovery to see our family. As we came down the hall I saw my mom standing at the recovery door waiting to see us when she did she started to run toward the bed. I shook my head no to tell her she wouldn't live but that she was with us. She asked me "Is she alive?" and the nurse told her yes. She started crying and rubbing her head "Oh Olivia she's beautiful!" The rest of our family gathered around and started taking pictures and cooing over her. I handed her to my mom and slowly they all got to hold her and see her and kiss her. They handed her back to me and I just kissed her and loved on her. The doula was taking pictures the whole time.

 After awhile our families decided they should go so we could have some time with her. My Opa went to get the car for my Grandy. So only my Grandy (grandmother), my mom, Ethan, the doula, Avery and I were left. My Grandy was holding her and they came to check her heart, they set her down and I knew she wasn't there anymore. They'd been checking it saying it was still there but very faint for awhile. She called time of death at 11:33. My heart was broken and still is. They handed her back to me and we cried and held her.

 After a few hours I was ready for them to weigh her and measure her so they took her and did her hand prints and some photos. She was 3 lbs 13 oz,  and 13 inches long. She was a big baby for her age. She was just stunning too.

 We got some visitors that night and then once everyone left Ethan and I just held her. We decided along with our doctors to keep her body in the room with us. This is a very common thing and she wouldn't start to break down or anything and Ethan and I needed more time with her. We had a lot of visitors the next day and got lots of memory making items. Including hand and foot prints, casts of her hands and feet, lock of hair, her hospital band, etc. We bathed her and dressed her in a couple outfits all the time just holding her and kissing her. We had Now I lay Me Down to Sleep the foundation that takes photos for families come and they got a gorgeous photoshoot with us. We get the pictures back in a couple or three weeks and I honestly can't wait for them.

 We sent her to the morgue while we slept the last two nights we were in the hospital just to preserve her body but we did have her during the day. I will say the time we got was no where near enough but having her was so helpful. We got discharged yesterday and today we have to go to the funeral home to dress her and say our final goodbye to her body before they cremate her. I know she's no longer in her body but we love her physical body and being able to hold and kiss her. I have no idea how we'll find the strength to be able to say goodbye today but I am so thankful for the time I got with my baby. It was no where near enough and Ethan and I are beyond heart broken. I will post a couple of the photos we have of her below but I'm sure I'll share more as we get them back from the doula, family and friends who visited, and NILMDTS.

 I'll post more soon, maybe a more emotional post. I don't even want to get into the emotions because I can't figure out how to express them in words yet. Thank you all for your continued thoughts, prayers, comments and offers. Someone set up a page to bring us dinners! We are so grateful! We know our first meal is coming in a few days and we're just overwhelmed with all the love and support we're surrounded with and all the love pouring in for our baby. Avery Faith Selin. She is the most perfect human to ever live on this earth. We got 87 minutes with her and that will never be enough but I wouldn't trade those 87 minutes for anything in the world.

Very Little Hope

We went to our doctor today, excited to see the shunt working and Miss Avery to have a tummy that was not filled with fluids. I'd been having some light cramping the last couple days and I mentioned that when we first got there. We sat down with our ultrasound tech who always gets some measurements before Dr. Solomon comes in to tell us what she see's and talk further with us. Our US tech knows our situation very well, she came to the hospital with Dr. Solomon and did the ultrasound for my procedure when they put her shunt in 5 days ago.

 We sat down and she put the jelly on my tummy and I could see that she was even excited to see Avery. The first thing we saw was a big tummy filled with fluid. Her face sank and she said "The fluid is back." I wanted to scream. She took some measurements and we didn't really talk much. Usually, we're in there a good 45 minutes before the doctor comes in and the US tech will leave and get her but about 10 minutes into the measurements Dr. Solomon came in on her own looking sad too. "It's all back" she said "and the skin around her neck and cheeks are swelling." She took over the ultrasound and the tech left. She said that my cramping could either be contractions or just that she is growing so fast and so am I and that my uterus is cramping because its getting so much bigger so quickly. She said she would put me on the contraction monitor and she wanted to call 3 other doctors and we would decide what to do but there wasn't much else to be done now.

 Avery pulled the shunt out of her tummy and is holding it. Literally on the ultrasound we can see her holding it and playing with it. We don't know when she pulled it out but the fluid is worse than it was before we put the shunt in and when they put the shunt in it completely drained all the fluid so she made it all back and more in 5 days. It's so much that it's starting to push her organs up and her one good kidney is starting to look like it is in trouble from working so hard, meaning it could stop working.

 We got put on the contraction machine and she called and talked with the other doctors (one of which is a family friend of mine) she came back in and told us that basically they all agree another shunt will just put Avery in too much risk to justify putting it back in and she will most likely just pull it out again or it'll get clogged quickly. That leaving her in there with the fluid will put so much stress on her lungs and organs her heart will probably stop and she will most likely be stillborn and not make it to 33 weeks like we needed her to. Taking her out now since she has so many problems could mean she can't get any surgery because she won't make it through and she will just die. Dr. Solomon says she wishes that she had a crystal ball to see an hour before Avery was going to go into distress so we could leave her in as long as possible and then take her out before her heart stops in utero. Also even if she made it to 33 weeks since her only kidney looks to be going bad could be completely dead by then and then she'll have no working kidneys and need to be on dialysis.

 I was monitored for about an hour and was having no contractions so I'm not in preterm labor. It's just cramping from growing so quickly, it's also causing pretty bad back pain but there is nothing to do about it. It's just I'm getting too big too fast.

 I'm so fucking mad (excuse my language.) I just can't believe this. We get this glimmer of hope and then it just gets torn away. I just want her to be okay. I love her so much. This isn't fair, this is not okay. This is not how this is supposed to be. I'm 27 weeks along with a beautiful baby who has a perfect brain and her body just can't keep up with all these problems and there is nothing else I can do.

 I'm going to see an OB from the hospital tomorrow she was in the room for our procedure and we will talk to her about what she thinks. We've all been talking about possibly admitting me into the hospital for the remainder of my pregnancy, however long that maybe so they can monitor her heart and then when she starts to show signs of distress we can do an emergency C Section so she is left in utero is long as possible and hopefully can get a live birth out of that. We will decide what we should do tomorrow, I think.  We have to decide if we want to have her now and see if they can do anything knowing they most likely can't but having a live birth and being able to spend time with her alive. Or leave her in there and see if she hangs on to 33 weeks but knowing she probably won't and then most likely end up with a stillbirth. How do you make that decision? Let her try to hang in there long enough so she has a better chance of living but knowing she probably can't make it that long and just letting her die or taking her out early and trying to give her a chance way too soon and knowing she probably won't live because she'll be so small but getting to see her alive? This is not fair and I'm so heartbroken. I can barley breathe I'm so mad at the world. I just want my baby girl to be okay, I just want to be able to do something for her. I would do anything to make sure she could live.

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.

Roller Coaster

So we went to see the Neonatologist on Monday. It went really well and we liked him a lot. He'd reviewed Avery's case and said that depending on her lungs he thought she had a really great chance at survival. It all depended on her lungs but if they were working everything else seemed to be fixable. As long as nothing got worse he saw good things for Miss Avery. Having more hope brought my spirits up, I couldn't help but being excited. The more hope the better.
 
 Today we went to the Perinatologist for our weekly ultrasound and consult. Last week we still had low normal amniotic fluid and this week we had actually normal fluid. It went from 8cm to 15. The range is 8-20cm for normal give or take a little. So we were looking great. We could see her extremely well and got some really cute shots of her face because we actually had fluid... Like these:

Here is Miss Avery's little face with her fist right under her chin. 

Here is a 4D image. A little creepy but you can see Avery facing the right side with her hand on her forehead. 

Here she is. You can see her cute little button nose and big lips. 

This one is a lot like the one right above it. Her little tongue is sticking out slightly between her lips. 

 We love getting these pictures of our gorgeous little baby girl. She is just the cutest little thing...

 Well then we saw and were told that her tummy still has a lot of fluid in it, from what seems to be her bowel leaking. They told us that that is probably what is causing our extra amniotic fluid. It's putting so much pressure on her bowel and making her pee a lot and causing a lot of stress on her heart. This is bad that we've nearly doubled in fluid since last week.

 We are fearing now that the fluid in her abdomen is going to put so much pressure on her heart that it will stop in utero and she will be stillborn. We could potentially drain the fluid from her stomach but they don't see a point yet if it's just going to come back in a day or two. There is no way to stop the fluid build up. So our doctor is calling the Neonatal Surgeon today and asking her what the soonest she would operate is because we have a very sensitive matter with time here. She needs as much time in the womb as possible to grow and mature her lungs but if we wait too long it'll put too much stress on her heart and that will stop. So we have to guess when the best time will be for Avery to be delivered and go into surgery.

 We were going to wait until 36 weeks to have my C Section but now that doesn't look like it's possible it looks like I could have it at anytime really. Whatever the surgeon says is the smallest she will work on her will be when we have her, hopefully she can make it that long. So really it could be anytime from about 2 weeks from now to up to 8 weeks from now. (I'm currently 26 weeks along.)

 It seems like every time we get a glimmer of hope we get shot down again and have worse news. My child has the perfect brain but her little body is failing her and there is nothing I can do but sit back and watch and wait. It's killing me, I'm so scared and so sad and I just want to help her but there is literally nothing more I can do.

They think that they will try draining the fluid off her abdomen before my C section so it's less stress on her lungs when she is born. I will get the set of steroid shots about a week before my C Section and other than those two things there is nothing I can do to give her a better shot at life. We are looking at a different hospital now to deliver at as well because it has more accommodations to operate on a baby there instead of immediately transferring her to PCH (Phoenix Childrens Hospital.)

 I'm just so tired and scared. Everyone tells me that I am brave but I don't feel brave, I just feel scared, broken and lost. This is the worst emotional roller coaster in the world. I just want my baby to be okay.  Please keep her in your thoughts and prayers, I'll take all the prayers and well wishes I can get right now.

This is Avery's abdomen. at the middle on the left there is a large white thing, that is her liver. All of the black inside of her is the fluid build up. You can see how much space that is. 

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.