Friday, April 25, 2014

A Word from Daddy J

We had another ultrasound this week.  Finally some positive developments. First off, we received our genetic test results, which were very encouraging:

The chances of the babies having Downs Syndrome: 1 in 4,100
The chances of the babies having Trisomy 18: 1 in 10,000
The chances of the babies having open neural tube defects: 1 in 9,300

Aside from that, we have made the family decision to solely focus on the positive with bringing these two new lives into our family.  Thank you all so much for your prayers and thoughts.  We know that our Heavenly Father has been listening.  This week we saw indications of kidneys in Little.  The actual kidneys themselves are difficult to see, even in Big, but the signs of kidney function are showing up in Little.  Stomach, bladder, and increased amniotic fluid are all present and accounted for.  In his first twenty weeks or so of gestation, Little produced 1 cm of fluid.  In the last two weeks he has produced just over 1 more cm--Huge improvement.  Also, for the first time Little stretched a leg while we were around to watch.  Femur, Tibia, Fibula, and foot were all visible on his right leg.  He chose to keep the other one tucked up against his chest so no picture, but up until now he had kept both tucked away.

There it is--Little's right leg, all stretched out!

  We are very happy about bringing these two guys into our family.  They might struggle some with unknown challenges but they are blessings, and we are grateful.  Even if all these babies do is let us know how loved we are by all of you, which we are confident will not be the extent of their journeys, they have fulfilled a mission in allowing us to see the good will and love of those by whom we are surrounded.  Thank you again for all the hopes and prayers on our behalf, we ask that you please continue them.  We love you all and will continue to keep you up to date with all of the good things the boys are bringing to our lives. 


Much Love ;)

Friday, April 11, 2014

Twin Update: Some Difficult News

First I need to start out by saying this: I don't need anyone's sympathy. I don't want you to say "I'm sorry" or "I can't imagine what it would be like". I don't want any phone calls or hugs or sympathetic looks. I just need everyone's prayers. I need the whole world to pray as hard as they can for my little ones that are growing within me.

"Faith is things which are hoped for and not seen; wherefore, dispute not because ye see not, for ye receive no witness until after the trial of your faith." - Ether 12:6

Today, we had another ultrasound. I've learned from past experience not to get excited for these ultrasounds anymore. Sure, I get to see my babies. I can watch them move and see all their little arms and little legs. But with every ultrasound has come bad news. And as time goes on, the news has just gotten worse. I now dread Ultrasound Days.

Let me start off by saying that our bigger baby boy is growing perfectly. He is and has always been right on schedule with his growth.

Our littler baby however, is a different story.

I'm currently 19 weeks gestation. Three weeks ago, Little was two weeks behind in growth. That in and of itself caused concern with the doctors at the Perinatal Unit of UVRMC. Today, he is a whopping three weeks behind. He has only one cm of amniotic fluid, whereas Big has a normal 6 cm of fluid. The doctors are fairly certain he has clubbed feet, which I wish I could say that was the worst of our concerns.

We keep hearing the same thing about our Little. "We don't know what's wrong, but we know there is definitely something wrong." We're told that there are four possibilities are being considered:

Down's Syndrome: A chromosomal defect where the baby has 3 #21 chromosomes instead of the normal 2. This is a condition that most people know about - we've all met someone at one time or another with Down's Syndrome, so I won't go into detail.

Cystic Fibrosis: This is a gene disorder caused when one or both parents are carriers of the cystic fibrosis gene. Being a carrier doesn't mean you necessarily have it, but it does mean you can pass it down to your children. Cystic fibrosis affects your lungs and can affect your body's ability to digest food. Those living with this condition are prone to frequent lung infections.

Trisomy 18: A chromosomal defect where the baby has 3 #18 chromosomes instead of the normal 2. Babies with this are often stillborn. If they do survive past birth, they typically don't live past their first birthday.

Potter's Syndrome: This is a condition in which the baby's kidneys are missing. The specialists at the Perinatal unit have never been able, using the sonogram, to see kidneys on Little. If he doesn't have kidneys, that could be the cause for the slow growth thus far and low amniotic fluid. Kidneys are essential to viability. If he doesn't have kidneys, he can live no more than 24 hours outside the womb. "What about a kidney transplant?" we asked. The answer: Not possible on a newborn.

I am not sure what to think or feel. I am not sure if I should set up both cribs or just one. I'm not sure if I should keep buying matching sets of baby clothes or start buying for just one baby. I don't know if we should get a minivan or keep the car that we have, since one baby would fit in our current car, whereas two would not. I have to begin the process of mentally preparing myself for the worst case scenario. But I can't. I just can't allow myself to think like that. I also can't allow myself to put effort or energy into preparing for two babies if I'm only going to take home just one. For now all I can do is pray harder than I've ever prayed before.

Our next step is genetic testing. We will know more once those tests have been completed and the results come back. Just as everything has been with this pregnancy, we'll just have to wait and see. And although these kinds of posts can be incredibly emotionally draining to write, I will try to keep everyone updated.