It just seems unnatural to be 31 weeks pregnant and packing away your nursing supplies to go into consignment in the fall. It seems so out of place to pack away the too small little boy clothes into a box and label "to sell" while you're pregnant with a little boy. I think, somehow, it will be easier now than it will be later. I will not feel as... empty ...now as I think I might if I pack away a breastpump with memories of holding my son. Some days, it seems like the weight of the world is on my pelvis.
The doctor's appointment Friday was better than we expected. If you can call it better.
We discovered in the ultrasound that the kidney dilation is getting worse. Now clinically classifiable as a "thing".
The diaphragmatic hernia is not getting better. It is a left sided herniation of the stomach into his lungs. It is severe enough that it is nearly level with his heart. His heart is now sitting more on his right side than his left, and it is reversed it's orientation-- meaning it is no longer pointing to the left side, it is both ON the right side and pointing to the right side. He essentially has no left lung and the right lung is now being squished by his heart. Part of the problem with this incredible 'squishing' is that the development of the arteries that should carry blood/oxygen to his lungs once outside the womb, is being 'bound' or constricted to the point that his lungs won't actually get blood. His lungs will not get enough oxygen once he *has* to breathe to be ABLE to breathe. He will not live long enough to develop congestive heart failure.
The many brain abnormalities will likely cause him to be 'depressed' at birth. He will likely not make much noise or many movements... if he makes it through delivery at all.
Everett has what the (incredibly wonderful and sweet) neonatologist called a 'unique constellation of anomalies affecting his organs'. He said that it seems to be a genetic syndrome called Fryns. The only real intervention available is not an option for Everett because his prognosis is so poor. There are so many problems.
There are so many problems.
We asked what to expect when we see him. If he is born alive.
There may be some subtle physical deformities in his face and his fingers. He is small. At 31 weeks, he is only 2 lbs 10 oz. (Juxtapose that to Aiden's birth weight at 32 1/2 weeks of 4 lbs 9 oz). He will be born blue. He will not 'pink up'. He might breathe for a few minutes, he may not. He will likely start to gasp for air in the last few minutes.
We will watch him, hold him, while he suffocates. O God. How are supposed to do this?
So how was this a good appointment? Dr. Kupke didn't push any tests. He didn't offer any intervention. He offered us the one thing we wanted most: the chance to hold Everett every moment he is alive. He told us that the room would not be filled with doctors and nurses. That we would not have to be monitored during delivery. That short of anything going wrong with *me*, there will be no interventions for delivery. We could choose to induce if we wanted. We will talk to their Palliative Care Team at Northside and set up the plan. They will help us make plans. Help us decide. What to do with my son. Who will never come home. Who will never know his brothers. His mama. His daddy. Or his grandparents.
O God.
How do we live through this? How do we survive the death of our baby? It seems so insurmountable. If I sit still, I cry. I'm scared to talk to anyone about it, REALLY talk about it, because I'll start crying. And never stop. I don't want people to *see* how much it hurts. Read about it, okay. But not *see* it. I can't even cry with Keith. It might make it harder for him to know how much it hurts me. He is sort of ... separating himself from the 'daddy' role until we deliver. And if he sees me hurting like this (I'm sobbing, he's snoring), it will be harder for him. O to be able to compartmentalize *this*.
And so, there are days the weight of the world sits on my pelvis. It is the love of a mother for her child, and there is no greater thing on earth.
So we rely on the unearthly love of a God who shares in our sorrows, who cries with us, and who holds us up in our weakest moments. Because this seems too impossible to survive. But you know you must.
But you know you must.
