Recovering

I am still recovering from a nasty cold that started the other week.  Monday and Tuesday last week were completely miserable.  We have made minor progress in our transition over to Children's Hospital and Abbott-Northwestern.  Our meeting last Friday with North Memorial was informative yet we got bad vibes from the neonatal doc. It is funny how little some doctors know about T18 survivors and seem shocked when we bring up the number of families we know or are in contact with.  I have gained many new T18 mommy friends on Facebook and through other organizations who are more than willing to share their stories.  The medical community can be very untruthful because they think they are doing the parents a favor by either terminating these babies by being extremely fatalistic about the outcomes or not providing services they would offer to a "normal" child.

We had a short ultrasound that didn't tell us much about how Nicolas is doing other than I am starting to take on excess amniotic fluid which is a problem.  The excess fluid first of all will be very uncomfortable as the pregnancy progresses and also puts me at risk for pre-term labor because my body may believe it is further along. I more than likely have ultrasounds every 3 weeks to check on the fluid.  I know that they can remove some of it in the same way they do an amniocentisis.  All I can say is ouch.  But I would definitely consider it if it keeps Nicolas in utero longer to help him develop.

Part of me feels that North is happy to get us over the Children's because then they don't have to deal with us any more.  Or I could try and be more positive in saying that they are looking out for the best interest of me and Nicolas by having all services under one roof.  We have always been very clear to the doctors that we want to do whatever it takes to bring Nicolas safely into this world and were open to the different delivery options and locations.

Another big issue that has finally been addressed by the docs is that Nicolas' stomach has been noticeably absent on ultrasounds since 19 weeks.  This problem was never really discussed until last Friday.  The problem Nicolas may have is esophageal atresia which is a disorder of the digestive system in which the esophagus does not properly develop and attach to the stomach.  Obviously this is not a good thing for Nicolas, however, if he did not have a chromosomal issue, it is fixable through surgery.  There is a great reluctance for doctors to do the same surgery on a T18 baby because they have been classified as non-viable which is the stupidest thing I have ever heard. It is discrimination in my opinion. So now I will likely need an MRI to evaluate Nicolas' stomach issue further so that we might be able to get a surgery consult with Children's Hospital before his birth.  I am using all of my resources to locate good doctors who see no difference between Nicolas who as T18 and any other baby. Ultimately he is a human being with rights and it is up to Bryan and I as parents to make those tough choices and determine his quality of life not the doctors. 

We received some good news last Friday that we should be able to work with Dr. Calvin and are looking to schedule Nicolas' birth day on a day that we hopefully can be guaranteed that Dr. Calvin will be there. :o) The idea is to pick a date when I am around 39 weeks, but this is also dependent on whether or not I experience other pre-term labor issues or if Nicolas is becoming distressed.  There are many variables to consider because of the excess amniotic fluid, risk to the placenta detaching because it is also affected by the same chromosomes, or Nicolas becoming stressed in utero. I am excited to place a date on the calendar and start planning things out for our family.  So much to think about and consider.  I pray for Nicolas to make it full term to give him the best opportunity for growth.  He is very safe in utero because my body and the umbilical cord provide him with a cozy home that he thrives in.  Outside of his nest his body will have to do the hard work and we face the complications related to the T18.  He is such a beautiful looking and active baby, I can only wish for the best things for him.

I am looking forward to the prayer shower on Sunday and seeing the support we have from our friends, family and church.