"Never had there
been such eyes,
such a nose,
such wonderful
silly wiggly toes"
CHOP has an amazing team; supportive, caring, sensitive and oh so thorough. Today we got more confirmation and clarity of what we are dealing with. One of my concerns was that Jason and I would have to make the impossible decision of intensive interventions vs palliative (comfort) care. I have always felt, and still feel, that this decision is not mine to make. Ultimately, this is God's decision whether or not Alexander survives. Today I learned that this decision is not mine and I am so thankful. Our OB went into great detail about why this is a fatal form of dwarfism.
The palliative care team, Jason, and I will meet next week to go through some of the more difficult questions. Since there are a couple of concerns, we are now aiming to "make it" to a c-section delivery around 35-36 weeks. Again, I am so thankful that this decision is not mine to make.
One concern is that every week my amniotic fluid is increasing. Since Alexander's throat/esophagus are small, he is not swallowing the average amount of amniotic fluid, meaning enough fluid isn't going through his digestive track nor is it going into his lungs to help them develop. This in turn doesn't keep the fluid in balance and it starts to increase at an abnormal rate. The high-average level of amniotic fluid is 25cm of fluid, and I am now 31 weeks and at 33.5cm. With this amount of fluid, my skin feels very tight and I have a tearing sensation and am tender to the touch BUT I can still breath, sleep, and of course, eat. They will reduce my fluid by TWO to THREE liters if I can't function. Let me tell yah, I was 42+ weeks with Ana and I am more uncomfortable now than I ever was with her. Very different feeling going on with our little Alex. Anyways, they will monitor fluid at least once per week from this point on. The only risk of having too much fluid is that it could put me into labor or my water could break. Ha! Basically I'm a water balloon that could pop... lovely.
Another very sad and very real concern is that if we wait too long (38-40 weeks), there is risk of a still birth. Since his chest cavity is so tiny, it could start effecting the function of his heart. Our goal now is to meet our little boy alive and have the typical 45-90 minutes with him that most TD cases have. This is very important to me.
