Tuesday, March 27, 2012

Medical mumbo jumbo

SO it has been a little while since I updated this blog. Many of you (ok probably all of you) have been following on the Facebook page, so I don't feel like you all are too far behind in knowing what is going on thus far, but I would like to document, and I haven't done that in a while.

Two weeks ago we had a fetal echo and an appointment with a pediatric cardiologist at Yale. They gave us (my mother and I) a lot of information, most of which was way over my head, hard to remember, and flew in one ear and out the other. Thank goodness my wonderful mother, the nurse, had her pen and notebook handy to write down everything that the doctors said.

Here, briefly (or as briefly as I can) I will go over the medical terms that made up the in-utero diagnosis:

1- The first piece of good news is that they found her stomach!! It is on the wrong side of her body, but it is there, it had fluid in it which indicates no atresia (missing segment)
However it does mean that there is something very wrong. She has what is called heterotaxy, otherwise known as situs inversus or Ivemark Syndrome. If it was totally opposite (heart also) it could possibly be fine, but her heart is in the correct place and her abdominal organs are switched. This has the potential to cause other problems with the organs within her abdomen. They won't know the extent to which her organs are deformed or dysfunctional until she is born, but there is a good possibility she may have malrotation of the intestines and require an additional surgery to fix that.

2- Her heart has many different problems. The pediatric cardiologist gave us two diagrams to look at. One was of a normal heart, the other of what they see on fetal echo to be true about Baby S's heart.




There are a total of 8 different anomalies with Baby S's heart. If you can zoom on the picture, you can see that they are all labeled, but here they are

a- complete atrioventricular septal defect (AV canal): the wall separating the bottom two chambers of her heart never developed. She has a functional common atrium.

b-right SVC (superior vena cava) basically it faces the wrong way

c- interrupted IVC (inferior vena cava): this is supposed to connect to the bottom part of her heart but never developed. Instead an alternate vein attaches the IVC to the SVC. There are some smaller veins (hepatics)that connect to the heart but the IVC does not.

d- total anomalous pulmonary venous return: Her pulmonary veins do not enter the heart where they should. With this defect there is the possibility that the veins are deformed also but they cannot tell that on ultrasound or echo until after the baby is born.

e- Malposition of the great arteries: The great arteries (being the aortic artery and the pulmonary artery) are not quite where they should be.

f- left atrial isomerism: both of the upper chambers of her heart developed as left atriums. She has one on the left and one on the right, but anatomically they are both classified as left atriums. This is important because the node that provides the electrical stimulus to keep the heart pumping is typically located in the right atrium. Other cells can do the job temporarily, but this increases the chance that she will need a pacemaker early in life.

g-pulmonary stenosis: The pulmonary vein going out of the heart (from the heart to the lungs) is narrow and may not be able to provide enough blood flow.

h- right sided aortic arch: the arch of the aortic artery bringing blood from the heart to the body faces the wrong way. This is the least of their concerns.

Of course they made sure to say that this is only what they can tell from fetal echo. Echo's are most accurate between 18 and 22 weeks, but since I am so skinny (they said they knew I was gonna be skinny by how clear the echo footage was) the picture was likely pretty accurate. They won't know more until baby is born. Obviously we still also have to deal with the cleft lip/palette and she has a small cyst in her brain but they are unsure as to what that is because it is in a spot where they normally don't see anything. Kinda makes me wish I'd taken that 'physiology and basic functions of the brain' course this session.

Friday, March 2, 2012

my soul just keeps breaking.. little by little

I feel broken down and defeated today.

After meeting with the lawyer, I have more questions than answers.. and I've been told that I can't share the most intimate details of what is going on with anyone. Not the media, not my friends. We have to keep within the spirit of the surrogacy agreement so that the opposition's lawyer can't find me further in breach of the contract.

This means, that even after all of this has transpired, the IPs still have the opportunity to change their mind. The court has the opportunity to declare that I can have nothing to do with the care of Baby S after she is born. I have to allow the very people who have given me nothing but grief, anxiety, and despair over this whole situation, access to medical files concerning test results that they didn't want, and access to attend appointments for a child that they wrote off and wanted to destroy. AND after all of this, they can decide that they want to keep her and raise her; even after they decided that her life wasn't worth saving or even trying for.

In the meantime I simply have to wait for them to make a move. There is nothing I can do until 10 days have passed from the date when we sent the response letter declaring that the IPs were in breach of contract by failing to pay their contracted amount at my last doctors appointment.

I have to sell my car to be able to pay my rent this month. I am putting up an online tag sale to sell as much of the girls' old stuff as I can so that I can pay the car insurance, the electric, and the cable. I'm hoping that my student aid loan money goes in soon so that I will have a little extra money to cover the 'incidentals' like diapers, paper towels, toilet paper, and my daughter's birthday present.
All because they can't accept that the child that has their genetics isn't perfect. They don't see value in her life because she may need medical supervision and care.

This child isn't dead. She is very much alive, and she makes her presence very well known an awful lot for a disabled baby. But to them, she doesn't matter. And to tell you the truth, I feel the same way about myself. I don't matter.. not enough for them (or some other people) to take me into consideration. This world is full of a lot of very selfish people.