Mighty Max & a New Adventure

I bubbled with excitement ALL day Friday. We would see our sweet Baby Miracle- for, like, a whole 30 minutes! It was our 20 week target ultrasound! I'd seen many of these before. They go over everything for you, like count his toes, look at his heart, check all his organs, etc. All the while you get to stare at your baby and "Oooh" and "Awww" as much as you want. More than anything, we just so badly wanted to see his face! That stinker had yet to give us a good look at his cute mug, and we wanted to see it.

So, of course, he doesn't show us his face. 

That wiggly boy has himself lodged so low, with his face tucked away so good that we never see it. But we have fun anyway watching him move his arms and legs around faster than we can keep up- he is just as wiggly as his Dad, and I am so smitten with both of them. So the radiology tech shows us, he is measuring exactly the right size, his kidneys are filtering blood, his stomach is digesting amniotic fluid, and his bladder is full- ALL good signs! She can't get a good look at his hands, and she can never be sure if she just sees one arm or leg moving back and forth or if she's actually getting a good look at right and left. I mean, this kid, he MOVES! She mentions she'd really like to see his face, and apologizes as she grinds the wand into my low abdomen, trying to get him to turn and get a look. I feel bruised, and still No Luck. She tries for a long time to get a good look at his chest, but he won't hold still enough, and she mentions something about not being able to get a good view to count all the chambers of his heart. 

Eventually, she removes the wand and the screen goes blank, and I just long to see him again... But she doesn't wipe off the ultrasound gel. She leans forward, and her face becomes serious, "The doctor will be in soon and will probably want to continue this ultrasound so I won't wipe off your belly, yet." And the room begins to spin and my vision gets fuzzy as she says the words no parent ever, ever, ever wants or imagines to hear, "I don't want you to be blindsided when he comes in, so I want to warn you, I see a lot of concerns."

I think I've blacked out for a moment. I try to come to, and I blink back at her in the dull light of the darkened room. I feel Tyler squeeze my hand tighter, but I cannot look at him. She repeats herself so she can be sure I understand, squeezes my arm and reassures me that she will be back with the doctor soon and they will explain everything. I just nod, because my throat is closing up and I cannot speak a word. I feel like every inch of me is filling with panic and I might explode. But I don't explode, I just start to cry.

Concerns? What concerns? We just couldn't see his face, right? She couldn't see his heart well enough to count all the chambers, but that doesn't mean they aren't there, right? WHAT CONCERNS?! Is my sweet boy going to be okay?

I, finally, turn to Tyler and his eyes reflect how I feel, but he remains calm and tries to calm me. "Its gonna be fine. Everything is going to be fine." It sounds more like he is talking to himself, but I know he is trying to hold it together for me. We try to talk about other things, try to keep our minds off it. It doesn't work. We are both terrified.

We wait for what feels like an eternity for her to return with the doctor.

Dr. Andres comes in the room, and he is cheerful to meet us but very serious all at the same time. There is a lot to talk about. All those "concerns." 

Folks, are you sitting? This is a long, overwhelming list. 

First and foremost, the fluid on his brain. It is called Ventriculomegaly. Ventriculomegaly is when the lateral ventricles in the brain are too large, meaning they have too much fluid. Baby boy's are about 3 times too large. This is, obviously, not ideal for brain development, and from the looks of it his brain has not developed much because of it.

Image from University of California, San Francisco
Next, they show us his right foot, they are sure, is clubbed. Because of how he moves they can't be sure about the left. It looks like it might be, but they also may just be seeing the right foot again.

Then there is a cyst/fluid-filled sac off the back of his head. They look and look and move around it, but cannot see exactly where it is attached. This can be caused by a neural tube defect, but Dr. Andres cannot be sure which since they can't get views of other things that might give them a better indication. It is either a very rare and serious form of Spina Bifida (spinal cord fails to develop properly) or Encephalocele (an opening in the skull). 

Whichever of the neural tube defects it is may have been caused by what they are fairly certain is an amniotic band they see floating near the baby. An amniotic band is caused by strands of the amniotic sac separating and entangling parts of the fetus (like plastic bags entangling fish in the ocean). They can only be fairly certain it is an amniotic band, since both the doctor and the radiology tech have never seen one on an ultrasound before- they have only ever read about them. It is extremely rare.

Image from University of California, San Francisco
Dr. Andres takes all the time we need to discuss and talk about all these huge medical terms we cannot begin to pronounce, let alone understand. We are, at this point, totally overwhelmed and in shock. This poor, helpless, little boy has so many challenges ahead of him. How do can we help him? What can we do for him? How do we even know where to begin?

They schedule us to return Monday. Dr. Andres wants to disperse our ultrasound and notes to colleagues at the University of Utah Hospital and Primary Children's for 2nd, 3rd, and 100th opinions. He also tells us to get baby to move into a better position by Monday, so we can ultrasound again and look for more signs and issues that they could not see today. We are asked to think about having an Amniocentesis for more help in determining more information. The doctor and radiologist leave us in the room. The door shuts, and almost as if it flipped a switch, the tears burst from our eyes immediately. 

The next 2 days are spent on phone and text trying to update family and friends as best we can. There is so much unknown and we are so overwhelmed, we can only handle going through the raw details with a handful of people, and just asking others for their prayers. We are terrified, stressed, anxious and, yet, we feel calm. We think of this boy, and we just know he is so very special.

By Saturday morning we decide that, under the circumstances, we need him to have a name now. This wild, mighty and miracle boy will be named Max. And we adore himDespite the fear of the unknown, and our great concern for him, we feel so blessed that he is ours. 

Today (Monday), we returned to the doctor to see if this cute little bugger had turned around. Max had changed positions, somewhat, but still didn't want to cooperate too much. He is stubborn, which we think is good under the circumstances. They did get a good enough peek at his face to see he has a cleft on both sides of his lip. And they were able to see 4 chambers of his heart, although they are concerned about its position. They still could not see exactly where the cyst was connected, but they were able to see that there is NO brain matter in it! However, His lower spine looks great, which means if it is Spins Bifida , it is the worst most uncommon kind.

They recommended holding off on the Amnio, which was a relief since we still aren't sure about it. No matter what they tell us from it, we cannot and will not end this pregnancy. We will cherish him for all the time we are given. Instead we are being scheduled for an MRI at The University of Utah hospital. Hopefully this will tell us which of the neural tube defects Max has.

Amidst all the struggle, He is a funny boy. He doesn't like to show the things they need to see, but he is sure happy to show us his penis and his butt. Hello! He IS Tyler's son ;) We love this kid so much already!
Suddenly, I know why it took almost four years to get here. Suddenly, I understand. Four years ago, I could not have been prepared for this. Four years ago, my faith would not have been this strong. Four years ago, this may have just destroyed us. But after the last 4 years of learning to rely on the Lord and his timing, being led by faith, dealing with the loss of Baby Boston, and aching for a child so much I feel like Tyler and I can take on any challenge together now. I know we can do this.

The Lord has been preparing us for Max.