Delaney Ann Williams was born May 3, 2013 at 11:00 am 5 lbs 14 oz 18.5 inches. She passed away May 4, 2013 at 4:30pm

Yesterday was supposed to be my meeting with the neonatalogist and tour of the NICU. However, apparently the doctor got sick and had to go to the doctor...so they had to reschedule. Now it is next Tuesday, ( a week from today) and I'm so wishing we had already gotten it done with. I have been have much worse contractions and pains in general since Thursday and I wasn't exactly sure I was going to make it through the weekend. I remember feeling bored and nervous and excited and impatient with my son at this time, but now I'm feeling a sense of urgency as well. My swelling has gotten quite bad as well. To the point the doctor is a bit concerned about it now. My weight is holding fairly steady and my blood pressure is still good but I had trouble after delivering my son and showed no signs of ecclampsia during that pregnancy and yet wound up having a seizure from it. I am still working since no one has told me to stop yet. And Delaney is still doing wonderfully. I go to my regular OB tomorrow and then back to the specialist Thursday. So maybe I can get more information then. But I'm getting worried.

I seriously think it should be Friday already. I am TIRED! Appointment on Monday went fine. Didn't seem to have any new concerns anyway. The one yesterday went pretty well too. My regular OB measured yesterday and her measurements said Delaney is 5 lbs. Which is good news! The specialist will measure next week and hopefully we continue to get good news with it and she will be 5 and a half lbs. or more. Monday is our meeting with the hospital and I have no idea how to prepare for it. I feel like a lot rests on that appointment for some reason. I have my bags packed now. Since my OB has been suggesting it and since her measurements put Delaney up in the weight range she needed, I went home and packed the hospital bags last night. I also went and got a few things from Babies R Us yesterday. It was hard to leave most of it there on the registry and not just buy everything! Sometimes it feels like time is going fast and then days or weeks like this one make it feel like its dragging. I cannot wait to find out next week when we are setting the delivery for. I want a date. I have one more appointment this week then just two more weeks of appointments. Part of me feels ready and the other part is wicked nervous and unsure, just hoping she will be ready when its time.

First appointment of this week is over, and it was good. Actually. Delaney is still passing her nst's with flying colors and is still kicking up a storm. Her right kidney is still enlarged but is not moving up or down which is good. Her stomach is still up in her chest and her heart is still in the same position and squished. None of that has changed for like a month. The only thing that changed is the pressure in the cord went down some, it is now in the upper end of the normal range which is still concerning but a step in the right direction. The same with the fluid, which nothing was mentioned with the fluid at the last appointment so I have no real idea what that meant other than we're going in the right direction. Its a good thing I trust Dr. Blake or I would be so much more stressed. But she seems to know what she's doing and I am now, officially, at 34 weeks, which I had been told by some that I probably wouldn't make it to here. I'm doing my best to stay relaxed and calm even about the stressful things that happen in my daily life. I'm actually in a perfect time at work in a way just because its the state testing time. I'm only a monitor and am allowed to put my feet up while I watch the students. So I feel a bit more relaxed while at school. I've also been doing some gardening (nothing strenuous or large scale) which I think has helped me relax actually. I know it bothers some people to see me doing anything, my mom worries about everything I do right now, but I make sure to rest and put my feet up when I feel the need. And I don't see how planting some flowers is really all that bad. Like I said it actually helps me feel better, it takes my mind off all the other worries and junk that tend to go on in my life. I know the next couple weeks are going to be a bit rough with lots of appointments, and the one I am actually the most nervous about , with the neonatalogist on the 29th, but I think I'm doing okay so far.

I went yesterday for my weekly appointment with the perinatal specialist. Delaney is still doing great and passing all her tests. She is practicing breathing regularly and has good movement and heartbeat even through the contractions I have been having. Her weight isn't really where I wish it was but 4 lbs. at this point is nothing to scoff at. I had several contractions during the testing. They have been getting more frequent and more noticeable as time has progressed. They were coming at regular 10 min. intervals yesterday during the tests so I became worried that maybe the doctor was going to put me on bed rest or something due to that. But after she took what seemed like forever to come back in after the tests, she totally took me by surprise by saying that she wasn't concerned about the contractions really because Delaney tolerated them very well. In fact, the contractions didn't seem to faze her at all. She is doing great and doesn't seem to be affected by the other problem that we are now facing. Which is the blood pressure in the umbilical cord being elevated. She didn't tell me what this really means or what kind of complications it can cause or anything other than I have to go see her twice a week now for the same tests and monitoring. She said it was the second week in a row of it being elevated, which I didn't know, and so they wanted to check me twice a week. So far its not harming Delaney and again she doesn't even seem to know that anything is wrong. I'm not on bed rest or anything. But what does this mean? I can't really find any information on the internet about it at all. I've found a few things people have posted on other sites asking about it, but no actual answers. Its so confusing. Now I have three appointments a week and I'm missing tons of work. I feel like I spend my life in the doctor's office. I miss just being able to enjoy life and do the things I love, like gardening and hiking, and even just being able to enjoy being pregnant. I never thought my pregnancy would be so complicated!

I'm sleepy today so this might be a bit more rambling than usual....which is saying something ;) I had my weekly appointment with the perinatalogist yesterday. Delaney seems to be doing very well. She has gotten a 10/10 on her last two appointments there. She will do a growth check at this doctor next week, but I also saw my OB this week and she did a growth check and said that Delaney was 3lbs. 13oz. Which is one ounce over the "norm" according to the growth charts they showed me! I have always felt that she is feisty and strong. She is showing them up so far. So I should be happy and celebrate...but then I wonder if she will be able to do as well once she is born. I know I shouldn't doubt her and that I need to have faith in both her and in God that everything will be as it should be, but I would rather make it like I want it to be. I have started to really want to get things for her, like a swing, a crib, get a room set up for her, that sort of thing but I wonder if I should. My husband thinks we should have a baby shower or at least get things for her and then if the worst happens we can just give it all away to someone else who needs it. One, I don't think that I would want to just give it all away because I would still want to try again in the future and I would still hope for a little girl. Two, wouldn't it be harder to have all that stuff if the worst happened? Has anybody out there had a baby shower and/or gotten things ready like normal anyway and then had the worst happen? Do you regret it? I know I've become preoccupied with this lately when I need to be focusing on the positives. The problem is that I do feel deep down that she will make it. She will fight and be strong and never let it get her down. But my biggest fear in life has always been being wrong. And I hate not knowing. I'm not really very patient. And through all of this I've had to be patient. I've done fairly well, but its this last little bit that's driving me crazy. I have my weekly appointments with the specialist, then in two weeks I start my weekly appointments with my OB, and then at the end of the month, we meet with the neonatalogist and tour the NICU and do all that. Then on the first or second of May, we set the date of the delivery as long as her growth keeps up and she does well. So it seems like a lot, but it is still a lot of waiting in between. And knowing that these appointments are there, kinda looming, makes it feel so much like the home stretch and it makes me antsy to get there. Like taking a long trip, the last 30 miles to home are always the longest of the whole trip because you are so ready to get there. That's how I feel. And a big part of me is excited because I feel like she will make it. But how does one simply sit back and wait? This time of year in Oklahoma can be very active with severe storms and even tornados. When a storm is building up around here, there is a charge in the air that is very easy to feel. Everyone gets agitated and restless. Its not really a calm, yes the air can be quite still and sometimes the birds will become completely silent but it usually doesn't make any humans feel calm. That's what I'm starting to feel deep down, that held breath right before the wind kicks up and downpour lets loose. I know there will be a flurry of activity once she is born. I just hate waiting.

Its been a month since I was last on here. I have had so much on my mind and so much going on that I haven't really been able to put much into words really. Delaney has been doing well at her check ups and has passed all of her little exams. She is practicing her breathing even. She also has grown. She put on 1lb 1oz in three weeks, which the doctor said she wouldn't do that much. She is also still active and moves almost constantly. I, however, have been feeling more panicky and worried that she won't make it. In fact some days I feel almost convinced that she won't and then I sink into a weird state of half depression half strength or something. I'm not sure what causes these thoughts or feelings. I have no physical reason to feel like this. If anything I should be more convinced than ever that she's a fighter and going to make it. I don't know if its just because I haven't been sleeping well and have had a lot of the Braxton hicks contractions or what. I will just all of a sudden get a panicked feeling that I've lost her and I mean I panic, I even have a hard time breathing for a few minutes. I know I feel unsettled as far as her room and things go. I think everyone is going to wait on a baby shower until after she is here and doing well. So we have nothing for when she arrives. I don't really know what to do about these thoughts and feelings. I'm 32 weeks tomorrow. I know she is doing okay, and she still responds to my touch. Has anyone else panicked like this? I still have 6 more weeks of appointments and so far it doesn't look like I won't be able to make it, so why panic?

So last night, I mentioned to Josh that he'd seemed a bit withdrawn lately. I mean he didn't even seem happy with the news the doctor gave the other day. I thought he was happy, just had other things on his mind. Well last night he told me that he thought I had lulled myself into a false sense of peace thinking that somehow everything would be okay, that she would be okay. And he just was preparing himself for the worst so it wouldn't be a shock. And he is now more worried about how I will react in the worst case just because of this "false sense of peace". It really bothered me, one that he is so pessimistic still about her outcome, and two now I wonder what if I am lulled into a false sense of peace and things do turn out for the worst? So that one little piece of conversation has really shaken my peace. I know that he can't know or feel the things I do, but what if he is right? This is the first time we've ever been so completely opposite in feeling. I trust my heart, but I miss him being there with me.

Okay, so first...I went to the doctor yesterday and like I figured, they couldn't really tell us much of anything new. BUT, there was good news. I got to watch her practice breathing on the ultrasound which almost made me cry. It was beautiful and for some reason just really struck me. There has been no change really in her diagnosis. Her stomach is still up, her heart is still squished, and she is still a little smaller than average. She has grown though, and the doctor actually seemed excited about this. She grew enough to actually move up in percentiles. Which I didn't fully understand except that she GREW! She is now 1 lb 11 oz which is still below average, but the doctor kept saying that it was good growth. The other thing the doctor said that seemed so positive was that Delaney doesn't seem to be aware that anything might be wrong. She seems strong and normal, and completely unstressed. I am actually on an emotional high part right now. It seemed like such good news, so much more reassuring than all the other appointments. The only downside really, is that now that I'm starting my third trimester, I have to go see the specialist every week. And that's in addition to my regular OB visits and meeting with the neonatalogists at the hospital. Its tiring just thinking about it. But I'm in the home stretch now. :D

I go to the doctor again tomorrow. Its just the ultrasound specialist and I doubt it will take very long, there's not much new they can tell us. I am still kinda going back and forth on the second opinion thing. I really don't know what to do about it. I was told that doing a fetal MRI won't do any good and won't tell them anything more. But if its a better scan, why won't it give more detail? Does it make a difference? Who should I even ask about this since no doctor in Oklahoma will do a fetal MRI? Are there other scans or tests we should be doing now before she's born to be better equipped to help her after she is born? These are questions I have not received an answer to and don't even know where to look or who to ask about it now. I've had a couple bad days lately. I find myself being more prone to a pessimistic attitude now than before we saw the heart doctor. I don't like feeling so down about it. I feel very torn. We shared a moment on Friday that gave me hope for awhile, but its so hard to hold on to for long. I had a rough week last week with a lot of stress and worry about life in general, not just her. But when Friday rolled around I felt a little better just because it was Friday. I decided to take a bath to ease some of my achiness. While sitting in the tub I thought a lot about what had been going on with her diagnoses and all the feelings I'd been experiencing because of it. I had one hand on my tummy when I told her that she needed to grow big and strong right now so she would have the strength to prove all those doctors wrong. I remember I said "Please grow big and strong for me" and then had to stop so I wouldn't choke up. But I left my hand there and I felt her push her little hand or foot up against it. She just held it there almost in a gesture of reassurance. And we sat there touching like this for only about a minute. But to me it felt like the world. She is still very active and even feels a bit feisty, which I love. But I still find it so hard to reconcile these small things to the outlook the doctors seem to see. What if she really doesn't make it. What will these moments mean then? How much more will it hurt to have had these moments and feel optimistic at all if the worst happens? How does one cope? My husband and I love kids. I've always wanted a large family and after having our own, we had planned on even adopting. I work with kids every day, he coaches, to us there is nothing worse in the world than losing a child. So how are we supposed to deal with this? My current prayer is just that she will be very close to 2lbs. when we go tomorrow. She needs to get bigger.

If you haven't yet heard the song "Worn" by Tenth Avenue North, you should make a point to listen to it.
I am so worn right now. The same day I got the news that Delaney's chromosome tests were normal, my son started throwing up. He had such a bad stomach virus that it took him over a week to recover. Except that as soon as he started to act like himself again, he winds you coming down with a cold. Well, the cold actually turned into pink eye and a double ear infection. Which hes been down with for the last two days. Today he was cleared to go back to school so I could go back to work, and a half hour into the day his school calls me to tell me he threw up again and I need to come get him. All three of my step sons have been sick throwing up this week but they've been with their mom. My husband is now sick with fever, aches, and a bad cough, or basically the flu. And My throat hurts. I've been trying to stay away from all of this because of the baby and the fact that I can't really afford to take any extra time off work since I'm already missing so much for Doctors appointments. Went to see the heart specialist Tuesday. Doesn't look very good. I'm just sick of dealing with all this at once. I'm beyond overwhelmed. I'm so worn out. I have had so little good news in such a long time. I had to call my dad to get my son, so I could try to stay at work, but I really don't know that I will be able to make it honestly. I just feel a bit alone lately. I see other pregnant women everywhere and all I can think about is how much I envy them in their contentment. How they have no idea what I'm going through and how I wish I had never heard of this and didn't ever have to know anything about it.

The doctor called about 45 minutes ago. The Chromosome tests all came back normal. She has a fighting chance now. I feel free and hopeful for the first time in a week. I'm emotional about it, still wanting to cry just from sheer relief. But now her chances of survival have increased again. I wait another week to go back to the doctor and then I WILL take a list of questions. I want to know where we go from here. I know we still have a long road ahead, but I feel her kicks getting stronger everyday and I know shes a fighter. I finally have hope.

Well, Tuesday's appointment did not go as I had hoped. We got more bad news. Her CDH is severe. They can't tell how much lung tissue she has on her left side because the liver is blocking them from being able to see. Also the left side of her heart is quite a bit smaller than her right side. The doctor was unsure if its just because its crowded or if its another defect caused by a chromosome problem this time. So we are doing the DNA testing thing. I was devastated to hear this because of what happened to me previously. But Also, to do the testing, rather than do the amniocentisis, due to the risk issues, they are doing it with a blood test. They took two big vials of blood from me. And to get them they had to poke me a bunch of times. I have small veins and they always have trouble getting blood from me. So it took awhile and actually kinda hurt. But loss of blood seems to have had a negative affect on me. My throat is very sore the last couple days and yesterday I even stayed home from work and slept all day. I could easily sleep all day today too. I feel like my tiredness is making my outlook on Delaney's prognosis more negative. It feels like such a death sentence though. I just want my daughter. I just have to wait to hear the results of the test. :(

January 14th. I was nervous but also very excited and hopeful. I never imagined they would tell me what they did. I had never heard of CDH before. I spent the rest of that day and the following day in a daze, mostly numb and unsure of how to feel. I researched...and then broke down. Three days ago I found out. I have been finding it hard not to cry today. I spent all of yesterday afternoon and evening crying. This is my third pregnancy. My first was unhappy circumstances and I had decided to give her up for adoption before I found out that she had a defect. Not CDH but a problem with her brain. When I got pregnant with my son I was nervous that he would have the same problem but he wound up being strong and healthy and normal. I now also have three older stepsons, aged 13,11,and 7. Four boys in one house with me as the only girl (even our puppy is a boy!) had me praying fervently for a girl. I have wanted a daughter since my first baby who I gave up. I have remained a little hesitant throughout the pregnancy so far just because I was worried that maybe I had my chance to have a daughter and I gave her up for adoption. I was starting to relax and enjoy this last month or two. then we get hit with the news. And to be honest I am having a difficult time being positive. I feel that maybe I was right the first time and will not be allowed to have a daughter. I have a close relationship with my mom and even though it wasn't always so, I always wanted to share that closeness and fun with a daughter of my own. We don't know a full diagnosis yet. We haven't been to see the specialist yet. We go on Tuesday, January 22nd. I just don't understand why. All I want is a happy, healthy, normal, girl. I want to enjoy all of her steps in life. As a baby and beyond. I worry that even if she is okay after surgery, that I will have a very limited amount of time with her. Like she will die young no matter what the outcome of surgery. That may seem really negative, but I was told that my first little girl would most likely not live a very long life. I am trying so hard not to think about these things, but with so many unanswered questions and reality being what it is, I find myself still thinking the worst. I just want the happiness and excitement back. I don't even know if I should allow my family to go ahead with the baby shower. I hate waiting. I'm not a very patient person. I just want Tuesday here so I can know more.