Thursday, April 30, 2009

Due date getting closer

I have been feeling so very emotional lately in anticipation of my Angel Boy's 1 year due date. He was due May 12, 2008. I know that my husband and I will be he only ones to remember. I close my eyes sometimes and try to imagine what he would look like now, what it would feel like to hold him tight in my arms and kiss his face. Something that I will only be able to imagine. I am not the same person I used to be. I have changed so much. I know I make others uncomfortable because they want me to be the old person they know. She's gone with a one way ticket out of here. I think it is because my heart is not whole. So many pieces and one missing. I do things for children at school who are in need because I cannot do them for my son. In my mind I tell myself I am doing it in his name. I guess that is my way to honor him, since I cannot physically do anything for him. Oh how I miss him. This is such an unnatural order of things. Babies are not supposed to die. No matter how long I live I will never be able to wrap my mind around it.

Thursday, April 16, 2009

The story of my baby boy Devyn

After having my first miscarriage I was devastated and no one except my husband could understand why. "Why are you so upset, it's just a bunch of cells" my OB of 13 years said. How could he say something like that to me, I thought to myself. 
We decided to try again and became pregnant, and switched OB's. I was over the moon with happiness and also very, very nervous at the same time. I wonder in retrospect if inside I sensed something would got terribly wrong. If I took 1 test I took 20. 
At my six week ultrasound baby was measuring right on schedule. Everything looked fine. I could hardly wait until my 12 week ultra screen ultrasound to see more. I started to show early and really did not realize how much until I saw my school picture. It was obvious something was happening in the picture.
The day for the ultrasound came and I remember being so nervous the day before afraid they were going to find something wrong. My husband and I waited in anticipation until the ultrasound tech came to get us.  She turned on the machine, and we saw the most beautiful profile on the screen, and heard a strong steady heartbeat. It was our son, even though we did not know he was a he at the time officially, my husband and I both "felt" he was a boy. (we found out later that our feelings were correct) The tech even commented saying " what a cute little profile." We were overjoyed! She never let on that anything was wrong. I had a full bladder, and she told me that it was not letting her get one of the pictures she needed, and asked me to go to the bathroom and come back. She continued the ultrasound, printed us some pictures and had us wait in the waiting room for the perinatologist. We still had no clue, and looked at the pictures smiling, and happy, and commenting how much that sweet profile looked so much like our older son.
The perinatologist called us in and gave us a report. He gave us such great news. Because of my age, 42, my risk factors before the test were really high for downs and the trisomies, but after the test my risk factors significantly dropped to that of like a 26 year old.  I exhaled a sigh of relief. But in the very next breath he said, pushing an ultrasound picture toward me, but we found this. Devyn had a urinary tract obstruction. He gave us no hope, saying treatment options fail, and told us we could terminate. And kept telling us we could terminate, over and over again. I felt like the entire world came crashing down on my head. I could no longer talk, and was thinking, how could he be telling me to terminate by baby. You just gave us such wonderful news about my risks, and now you are telling me my baby is going to die, and there is not help anywhere, and you are telling me to take his life??? What the fuck is this!!!!! 
I called my OB who was of no use, and as things progressed continued to be useless. I spent day an night researching what I found out, on my own, that my baby boy had Lower Urinary Tract Obstruction, or LUTO. It occurs in 1 in 5,000 to 8,000 male babies. As my husband put it, we hit the bad luck lottery. I had to find him help. I am his mommy. I literally searched day and night on the internet for some shred of help or hope. I reached out to my doctor, and he was absolutely clueless, and apparently chose to remain so because he offered me no help, or support what so ever. He said to me that I needed to find a therapist to support me through this and he would recommend someone. Then in the next breathe he said he did not know of any therapist so I would have to find one on my own. He was often too busy to return any phone calls, and each time I called the office I was transfered all over and had to continually repeat what was going on to who I was transfered to. Phone calls there always ended in hopeless crying. He basically abandoned us.
I continued my search for help for my son and myself. I found out about a surgeon in Florida who treats the disorder in utero beginning at 16 week, and also a counselor who dealt with trauma and loss. ALL ON MY OWN. When I told my doctor about everything I was able to find his response was that he "was so proud of my research skills" and he "would like all of that information so he could help his patients in the future". I was beyond floored he would say that to me. I/we were his pateint(s) now and he did not do crap to help us! 
To get help for my son I had to have a CVS done, something which I was always totally against having, but I had no choice. If Devyn was not chromosomally normal, they would not operate. I will go to my grave feeling in my heart that that was what caused him to die. we got the news back that he was 100% chromosomally normal, and the news he was a boy. 
Everything was set up for us to fly to Florida, during my 16th week of pregnancy. I went for my last check up before leaving for Florida, and the doctor could not find his heartbeat. He sent us to the hospital across the street to have an ultrasound. The doctor there treated us like dirt. She came in still chewing her dinner, and behaved like we were interrupting her, saying "I can't find the heartbeat either, sorry, and walked out. They brought the phone in with the doctor on call, someone I never met, who began talking to me about options. It was all a blur. She then hung up and my regular doctor (S.O.B.) called and told me more about options, and that he would call me tomorrow with arrangements, and then he says, if he forgets to call me and I don't hear from him by 10:00 give him a call. WHAT THE HELL!! IF HE FORGETS!!! Well he never called and we called and left messages and he did not return the calls until much much later. He told us that someone from the hospital would call us, and that delivering Devyn would probably be delayed until Friday,  because of the holiday. That call never happened either. My husband called to get in contact with someone, and he was given the run around. He was even told the person that the doctor said was to call was not even in that day. Meanwhile I just kept asking him if I was losing my mind, because I could swear I felt Devyn move, ane I could not believe all of this was happening. Finally many many hours someone called from the hospital, and they told me that the doctors that "take care of this" were both out of town and they would not be back until late the following week, and I was given an appointment for 8 days later. No one seemed to care that my baby was dead inside of me. It did not seem important to anyone except my husband and me.  When my councelor called to see how I was doing, I told her "I feel like I am in pergatory, getting ready to go to hell." I had to carry him knowing he was dead for 9 days.
My husband said the only reason he knew I was not losing my mind was the fact that I kept asking him. I still kept feeling phantom movements. We even went to a different hospital to have an ultrasound done because I was so convinced I felt Devyn move. 
My husband said he could not let me go on like this and that he could not bring me back to the hospital and the doctors who treated us so poorly. He felt that if we went back there he would lose me. He began a search for help. He got on the computer, and called and searched and searched and found a doctor who treated  Devyn, myself, and my husband with respect. And it is amazing to me that my original doctor and hospital was in a rather affluent area, and treated us like shit, and the doctor and hospital my husband found, who eventually delivered Devyn was in a inner city poorer section of the State we live in and treated us 300% better at the most horrible times of our lives. It just goes to show that having affluence has nothing to do with treating people. My baby boy was not alive, but he still deserved respect. He is my son. I cry each day for him. 
If Devyn had made it to his due date, I should have a 11 month old beautiful boy toddling around right now. My heart breaks each time I walk past his footprints and his ashes each day. So many do not understand this, as I have other children. That really hurts me. One child does not replace another, and I love and want all my children. My heart is broken, and a piece is missing.