Written May 12 2010
I am finally getting on here to give you all an update from last Friday’s appt w/ my new specialist. It was a very long and emotional day for me. By the time I walked out of there 5 hours later (yes 5 hours), I was drained. I felt like I did that horrible January morning when we had our first ultrasound confirming Zeke’s abnormalities. Defeated would be an understatement. For 2 hours I was scanned on the ultrasound by 4 different people in the office. I then met w/ my 2 new doctors’ and discussed possible outcome for Zeke & solutions they would try.
We discussed the importance of taking the amnio at this time. In no way did I feel pressured or pushed to make any decision like I had felt @ 23 weeks. Not only did she tell me every angle, but she held my hand while she explained what she recommends as the best birthing plan. Logically and in my head I understand why I should finally suck it up and take the amnio. It would help us better to determine the course of action once Zeke is born. Meaning: If the amnio comes back positive for trisomy 18 we would choose not to have his heart monitored during labor due to the fact that most healthy babies encounter distress during contractions where as a trisomy baby has a bigger chance of dying during labor because the stress is to much for there weak bodies. Hearing his heart stop while I am in the middle of pushing him out would then put me in distress physically & emotionally not wanting to continue w/ the labor process. She told me I needed to understand the seriousness of them performing an emergency c-section on me since my placenta has moved directly where they would put the incision & what length of comfort care that we want to take place with Zeke. If it is positive for T18 then no we would not rush him to NICU or perform any unnecessary procedure’s or surgery’s except to make him comfortable the best we can until he takes his last breathe.
Now if the test comes back negative then yes immediately after he was born we would have the NICU staff ready to rush him off to perform every possible action to help save him including heart surgery and draining of the fluid.
The problem comes w/ not doing the amnio & not knowing what steps to take directly after birth. The blood test they would take would not be available for at least 24 hours after Zeke was born and if he did have trisomy 18 most likely he would be in heaven by then. My biggest fear is that he will die in some stranger’s arms & not surrounded by the love of his mommy, daddy & his brothers. Now saying that your probably thinking well then why are you even questioning passing on taking the amnio? My response to that is HOPE. I was talking to David the other night & he told me he believes that if we do the amnio and it comes back positive our hope is gone, that it might be the only thing that is keeping me going & possibly Zeke. The slim chance that this is a fixable condition would be completely gone, yes not all amnio’s are correct and yes there could be a mix up with the test. Logically and medically he would be diagnosed w/ trisomy 18 and he would be cleaned off quickly & immediately put into David’s arms.
This last week has been hard. I have been so confused & so sad I just cry. I felt like I had begun planning for his funeral after that appointment. The realization of the end is so real for me and so scary I just can’t imagine that I am actually going through this. She told me that she does not want to induce me 2 weeks early & that she believes the last 2 weeks could be crucial for his weight gain. I was so heartbroken when she told me. Not because I don’t want him to gain weight, but because for once I though I would have something concrete to gear up for. To have family planning to come in by that date & knowing that I had control over at least the day he was born. Nothing has been straight forward, nothing has been a solid answer and all I wanted was 1 solid date to have marked on my calendar and know that that was the day. So when she told me I was going to have to wait and go into active labor I started crying. I feel like I have a ticking time bomb inside me and all I want is this to be over. I want to just move on whatever happens, happens & I just want to get past all of this pain. I know when I was pregnant with the boys the anticipation for the birth was a little scary but knowing that you will be rewarded in the end w/ a beautiful healthy babies you don’t care about the pain. This time around there might not be a present in the end; it may be sorrow & more heartache that I do not have any idea how to look forward to.
Yesterday I wish I never got pregnant; yesterday I wished I had miscarried in the 1st trimester. Yesterday I just wanted to be induced, have his funeral & go home to my boys and my husband. Tomorrow I will want to stay pregnant forever, Tomorrow I will want to bring him home & stay up all night with him struggling to get him to nurse. Tomorrow I will want to watch the boys change his diapers & play with him in his swing. Tomorrow I want to watch his daddy carry him all over the house and rock him to sleep & get that 1 photo you always get….. them sleeping on there daddy’s chest. The emotional roller coaster is exhausting. The guilt you feel for wanting to cut him out immediately is unbearable, but the joy of knowing we are the proud parents of 3 amazing boys is a wonderful feeling!