Prayer is all we need

So today I had another doctor appointment, I waited longer than usual for my 5 minute visit! Oh well, Dr. Wong said the baby is really big he even had to do a double take on how many weeks I am. Her heart was beating nice and strong today so that made me feel better. I will see him again in 2 weeks and next week another ultrasound with the specialist. Dr. Wong said it is possible to be induced a little early but we will talk about it in a few weeks. It is a pain going to the doctor all the time but even though I don't always get good news it gives me some sort of comfort to know she is still growing. I love to see her move around while they try to get a good glimpse of her. So for now I have decided to stick to my appointments.

I have been thinking lately about this "shower" that is planned for us for sometime in October and the more I think about it the more stressed out I get. It stresses me out because I am really afraid to break down in front of everyone and I know that is going to happen at some point during that day. I don't want to make people feel uncomfortable because they won't know what to say. I don't like to see people hurt, it makes me feel so bad. I want everyone to be happy when they think of Sami not saddened by what is happening. She is not here yet and she has already made me so happy and I want everyone else to feel that way too. So I have decided that I am going to cancel it. I figure in October it will be closer to my due date and emotionally I think it will be a little too much for me to handle. The concept is nice and I would still like donations made to some organization (haven't found one exact one yet) if people want but I think I would rather just have a mass at church for us. I think prayer is all we need. I called and left a message for the priest to call me, hopefully I can get something set up. I will invite everyone to join us in prayer.

On to another subject... I need to go buy some little stuff just in case we do get to bring her home (that would be so nice). I have the big stuff (car seat, stroller, etc.) I made sure all of Julian's stuff stayed nice and neat for the 2ND time around and I bought neutral colors with that in mind. I need to buy her little pj's and receiving blankets, stuff like that. I have been looking forward to buying that stuff since the day I found out I was pregnant but at the same time I am sad about it because I don't know if she will get to wear them. I would rather be prepared then not be prepared at all. I am not going to go crazy on the shopping but just enough to get us by. Again, is this really happening to me???? I know going shopping for her is going to be emotional, I can't even go buy diapers for Julian without wanting to cry but I want to be the one to buy that stuff for her. I want to feel even if it's for a few moments that all is well and that I am shopping for my baby like most normal pregnant woman do.

Lately I have been dreaming of her so much and in each dream she is perfect. In my dreams I know something is wrong with her yet I see her so her normal. It feels so real. Those dreams play with my head because I want that so badly... I want to hold her, I want to kiss her and I want to see her grow. I want to see how Julian is going to be as a big brother to her. Thinking of that brings tears to my eyes because that might not happen and it's just not fair. I am going to stop writing for now because I feel too sad now.

Weekly update...

I am so blessed to have wonderful people in life who love me and show this amazing amount of support. Not a day goes by that I don't get a call from someone asking me how we are doing. It is really nice, so again thank you to everyone.

This week has been a little tough but hey I am still here right? I met with Michelle from Now I Lay Me Down To Sleep (NILMDTS) and went over what she does and how this whole picture thing works once Sami is born. I swear they are a blessing, to go out of their way to take photos so that we as hurting parents can have such cherished memories. I wish I did not need their services but just in case I want to be ready. I don't want to regret not having photos taken of my little one. The thought of one day forgetting what she looked like scares me. I think they are such a great organization and I really admire them that is why I really want to donate money to them. I have been trying to find an organization to give back to and I think I found it. A shower of well wishes is in store for us (told you we are loved!) and well I would prefer people donate money to them instead of gifts. It would make me feel better knowing that parents who have to go through something like this will be able to use NILMDTS for a long time.

Another thing that happened this week... my brother Ernie went far beyond his call of brotherly duties. He went to the mortuary and started the process for our little Sami. I was dreading having to do that like you would not believe, no parent should ever have to do that, that is just so unfair!!! Him and I had discussed more or less what we had in mind so from that he went and asked if all my wishes were possible and thankfully they are. My biggest concern was that they pick her up from us at the hospital because I refuse to have her in the hospital morgue, not sure why but that thought really bothers me. This whole story is rather disturbing isn't? My gosh she is not even here yet and here I am talking about this. I am glad the process for that has been started only because now I can just not think about or worry about that for a while.

I have also started our birth plan rough draft, seems a little demanding if you really think about it but I just really want to make sure I make my wishes known for labor and delivery. I am not sure how medical staff feels about a person coming in with personal demands but in this situation I feel like I can be a little more demanding as to what I want during labor and after birth. With Julian it just did not go as planned and now I wish I would not have been so afraid to speak my mind, maybe he wouldn't have been in the NICU for a few days. The main focus of this birth plan is so that everyone that will be involved that day knows how important it is for us to have as much time with her as possible. I will post it one day to share with everyone. I have been making changes to it and reading it over and over seems to unreal. Everyday I have to question why this is happening to us.

Well here we are just about 24 weeks already, time is flying by and all I want is to make it stop. This morning I woke up because Sami was having party in my belly!! This little girl is getting way more active now and I am loving it! She is kicking me as I type right now! Larry was having fun touching my belly because he would push down and she would respond to his touch, he gets really excited when that happens. I am really trying to not stress out as much and just take things as they come, hasn't been easy but I am trying. Normally I dread weekends but today has started off so well, I am just going to enjoy it. I am in a happy mood and I have to take advantage of it.

Another hit to my heart

So on Friday I had the echo done to check on Sami's heart. I can't describe the medical terms they used but they pretty much said the left side of heart is not growing as it should be. She has a low volume of blood going through her heart. She will be okay while she is in my stomach however at delivery she is going to be faced with her thoughest challenge yet because that is when she will have to work hard on her own without my help. I think this news really got to me because I really wanted to hear something positive. I really wanted to hear that it was something minor and maybe she will have on less struggle to deal with it. God, I am so sad!!! I think more sad now than before because I just did not want to hear more bad news. I am so sad because nothing seems to be in her favor and my heart just aches to bad.
More bad news after another, it isn't fair!!! This weekend has been extremely hard for me maybe because now I know I really have to start getting prepared. As much as I did not want to I am gong to have to. Up until this weekend I thought I was mentally prepared to accept our fate but after hearing the news from Friday it made me realize maybe I am not. I feel like I am back to that first day when they found out something really bad was going on with Sami. I cannot describe this feeling I have right now because I feel like it's all new to me and it that is not so. I have known now for a while so I cannot explain this feeling. I was trying to explain to my honey but I just cannot find the words to describe it. It's really weird for me because I really thought I was ready. I rreally thought I was in control of my feelings.
Yesterday we were my Niece's birthday party and I kept my composure there but that is not to say I wasn't crying all the way over there. There is just a sense of emptiness in me already and I hate it because Sami is still with me. I feel like that feeling needs to go away because it is going to affect her and I definitely do not want that. Is she going to feel like I have given up on her? Will that in turn make her give up? At this point there has to be some change within myself because I am determined to keep this little girl safe for as long as I can. I have not given up and I will not do so either.
My sister Rachel and my niece Crystal came with me to the doctor and I am so glad they did because if I would have gone alone I just would have lost it there. Having someone there really helped me stay strong.
It is really weird how I handle this emotionally because I usually only cry when I am by myself or in front of my honey (even that is hard for me to do) and I am not sure why. I feel like I have to always be strong and not show that I am hurting to other people. I know they all know that is not the case but for some reason it is so hard for me to show my emotions in front of others. Maybe it is because I do not want them to ever feel "sorry" for me. God had given me this challenge and he would not have given me this if he knew I was not able to handle it. I suppose that on this journey some days are just tougher than others, although I really need stop being afraid of showing my true emotions to others because I know they will not see me any different, on the contrary because they will finally see that this is not as easy as I make it out to be at times. I am hurting really bad inside.

I hate my doctor!!!

Yesterday was a bad day... I was so mad that I was not even able to concentrate on writing in this blog.
So I went in for my regular Dr. appointment, I walk in they check my blood pressure and the baby's heart, nothing big. Anyhow, I had asked my doctor if he had ever delivered a baby with anencephaly and he said yes, which made me feel better. So then I asked him if I should just have a c-section and then he asked me "why are you asking me this, do you know someone who is going to deliver a baby with that?" WHAT????? I was like have you NOT read my chart? I have been going to this doctor since the beginning. He looked over it and said they have written down as encephalocele not anencephaly.... It's a nueral tube defect, I know that but what got me mad was that he asked me why I had not terminated yet???? Really? He was like "your baby is going to die as soon as it's born." I told him to you "it's" just an object but to me she is my baby!!! He was telling me her brain is on the outside like if I didn't know that already. He was like as soon as we cut the cord she is going to die because she is only surviving because you are giving her life right now. Last time I remembered he is NOT God!! He kept looking over the chart and he told me "well they recommended that you terminate" well obviously at this point that is not an option. I told him I decided to go full term and if he had a problem with that to let me know because I will have to go elsewhere.
I understand from a medical perspective that to them it may be pointless to go full term because of all the complications that can arise from this but regardless they get paid at the end of the day so whether I go all the way should not give them the right to be so judgemental and cold. I was so offended by his words!!!!
I think what set me off was the fact that he walked into the room where I was at not even knowing anything about me or my pregnancy. I would think that before a doctor walks into a patient room they look over the chart to see what they are dealing with or at least just to know who is the darn room! In my chart the reports from the specialist were all there, no excuse for him to not know what was going on with my pregnancy!
So after I made it known that I was VERY upset, I walked out, I was crying of anger. He didn't care, he didn't say one word to me.

So walking out of there I called the parenatal center and spoke with the case manager to see how I can change my Dr. (good advice from my sister in-law Marie). Thank God they were so nice and helpful. Sheryl from Family Birth Services called me back within one hour to tell me that 3 of the 5 doctors said they would NOT take me on as a patient, only because they are afraid of lawsuits and that is totally understandable. In between that time my friend Angie gave me the name of her sister's doctor who took her in a patient half way through pregnancy and her baby Liza had the same thing. When Sheryl called back I gave her that doctor's name and she said she was actually waiting for his call back. He was one of the doctors she called, I was happy to hear that. She suggested that I call that office as well. I did call and the manager was really nice, she said she would call me once the doctor came in. So I waited... I got a call back and I am now a new patient to Dr. Wong.

So today I went to go sign the release form to have medical records transferred over to that office and to get to know him. What a relief.... He was much nicer. He walked into the room knowing exactly what was wrong with Sami and HE NEVER QUESTIONED MY DECISION!!!! He said she was measuring a little big but all looked well. I will go back to see him in 2 weeks. One funny thing is that his office is literally right next door to the other doctor!!! Small world...

I have read so many blogs about medical staff being so cold to mothers in this situation and I never thought I would be one of them!!! It is a really ugly feeling. My gosh my little one is not even born yet and already there are judgements against her because she is not physically "perfect" well I will say it over and over to me she is absolute perfection!

Another day of up and down emotions....

I am not sure what it is but I wake up and I feel like I am still in a nightmare!!! I wake up and the first thing I think about is "encephalocele" that darn word just lingers in my thoughts at all times and I cannot get it out. Someone please stop it!!! It drives me insane! I want to wake up and just be free of that thought. Then for the rest of the day I am just worried, constantly!!!

There are times during the day where I am ready for that, I mean mentally I feel like I am prepared for what is going to come then guilt sets in because I feel like I shouldn't be prepared for that because really what normal person is? Then the thought of not being able to bring my baby home kicks in and I cannot do anything else but cry. I feel that pain so deep in my heart that sometimes I feel like I cannot breath, it's horrible. It's a mental struggle within myself and it makes me feel like I am crazy. How many emotions can one feel in a 24 hours period? I am 22 weeks pregnant and still have a way to go, can I really do this?

I know God is with me because I really don't know how I make it through sometimes. Although I have noticed myself asking "why" more often maybe because she moves more now and it feels so normal. How can this little person be ill? She is so alive and my belly is growing like a normal pregnancy. So how can it be that in a couple of weeks all this is going to just stop? Everyone else will get to live their normal lives and what about me? How I am going to wake up and not feel like I am still in a nightmare? I know life goes on and I will get through this. I still have my little Julian and so many times during the day he makes me smile and he reminds me of why I was brought here on earth. That little guy just knows how to really brighten my day and he is a big reason why I stay so grounded half of the time. This just sucks.. plain and simple!
Well here is to another day of up and down emotions....

Tomorrow another Dr. appointment then again on Friday with the cardiologist and sometime soon I will also meet up with Michelle the lady from "Now I lay me down to sleep" to go over stuff. She sent me an email to call her this week. I will go over that at a later time.

Dr. Visit update

So yesterday was another day at the Dr.'s.... I was so nervous but it actually turned out to be OK. I seen a new parenatal Dr (Dr. Ross) who was very sweet. She was explaining the measurements as she went through the ultrasound. Because of the hernia Sami's stomach is still a little high but her heart is actually where it should be now, so that is a good thing. She still has a heart defect but it's still unclear how severe it is at this moment. I am scheduled for an echo gram next Friday with a cardiologist so see how bad it really is. The cystic hygroma is no longer there, which made me happy. They did tell me there was a possibility for the fluid to re absorb itself and well it has. The encephalocele is still there, seems like it's pretty big because there is a pretty big sac around her little head. But through it all she is still fighting. She moves around a lot. Everyday her movements are getting stronger and stronger, I love it!!!
Dr. Ross wasn't so negative, she did tell us she has seen a baby survive surgery but she did remind me of her heart complication, that might change things in our case but still she didn't mention terminating this pregnancy or anything like that. She did give me a choice to not come back for ultrasounds because she said many parents opt for that because they just don't want to see it. Me on the other hand, if I could go weekly I would! I love to see my little girl, I see the defects but still to me she is perfect! We go back in another 4 weeks for another ultrasound.

I feel better now, I am still not getting my hopes up because there is still a long road ahead of me. At this point I am enjoying watching my belly grow and I feel so proud being pregnant. It doesn't weird me out anymore. People asking me how I am feeling does get to me sometimes because I feel like they are just feeling sorry for me. It is just what people do, I have come to understand it.

Miracles, why can't I believe in them?

Today we went in for a 3D ultrasound, I was dying to see her little face and I just couldn't wait. On the way over there a little part of me wished that I they could see a perfect baby girl but knew in my heart that was not going happen. I seen the tech trying to get a clear picture but her face seemed a little worried so I told her that I knew that something was wrong with the baby and I was aware of it. This place is just for parents to be able to get a sneak peak at what their baby is going to look like they do not give any medical input. Once I told the tech she was relieved because she was worried that I was not aware that something was wrong with my baby girl. She was very nice and understanding. She was really trying to get me some pictures and she gave me the DVD of all of Sami's movements which I will cherish forever. My sister in-law Janina and my mom joined us and they did a really good job of keeping it together. I didn't cry because I wanted it to be joyous moment and it was. Sami is still living, she was kicking like crazy trying to get the Doppler off of her. It was funny, she is a little feisty one!!! The tech advised us to come back in a few weeks once the baby is a little bigger to get some better photos of her. I hope that the sac of fluid won't be covering her face anymore. Seeing that worried me but I won't worry about that for now, on Tuesday I have a Dr. appointment with the parenatologist, so will see what she tells me then. I already have a lot on my mind.

I was telling my honey that when I first heard the news I prayed for a miracle and didn't want believe this was really happening (denial, denial, denial!!!) however I have stopped that. I stopped asking for miracles and just accepted our fate. I don't want to be angry with God once Sami is born and she isn't fine, then what? How is anger going to help me heal? I will be mad because I would have put all my faith into believing in this miracle and in the end the results are still bad like the Dr. had said. God knows I pray everyday, all day!! But now I pray that I get to carry her in my belly for as long as possible. It's not that I don't want her to be well because I do but I don't want to be disappointed. Perhaps it's fear that is holding me back, I am not sure what it is. I thank everyone for praying for us and wanting this baby to be healthy as much as I do but it hurts me to know that it is not going to happen. Maybe it's the "expect the worse, hope for the best" mentality that I have. At times I feel so mean thinking that way because it just doesn't feel right to me but that is my reality. Maybe I will feel different as time passes and it's gets closer to the end.

Oh I am so mad that I have to say in "the end", aren't births supposed to be beginnings? Beginnings full of hope.... I do believe in one thing and that is that through all of this God is going to help me be strong. I know that he will not let me down. A miracle might not happen but I will still have my faith that something good is going to come of this. Some how, some way it will, it just has to.