Tales of a TET Baby: High Risk Stress and Blessings

I haven't been able to sleep well for weeks. I wake up with my heart racing, sweaty, and scared. Usually I know why I am awake. I've been jerked out of a terrible dream. Sometimes it's a dream where I have a little special needs child, that we love, but that has quite a tough life. Sometimes I'm back in the CICU, with another baby, hooked up to machines and monitors. I'm filled with guilt for putting another child through all of that, and for putting their big brothers through the stress of a sick sibling. Then I'm awake, heart pounding, head hurting, wondering what have I done, and little man squirming around in my tummy. Not the lovey dovey, dreams of my new sweet smelling newborn baby boy that you hope for.

This past few days has been worse, leading up to today's big ultrasound. During the day I'm better, with lots to do. There is the big huge one to get off to school and help with his reading/math in the evening. Then there is the little one who needs lots of cuddles and a playmate while his brother is away. And the little tiny one is kicking and playing in my belly day and night so I'm not always stressed. But yesterday, as soon as I forgot about what was going to be happening today, for a few minutes, I'd receive a text message or a call from the doctor's office reminding me of all I had to look forward to. Meanwhile Zach spent most of yesterday on the phone with the insurance making sure that we really wouldn't have to fork up close to a grand to have this nightmarish test done. Of course after talking to numerous people and jumping through all the hopes that wasn't the case. Love the added stress that always pops up.

Last night, while Zane was saying his evening prayers, I told him that we were going to see baby brother today. I told him the doctor's where going to check that he was healthy and everything was looking ok. Zane, always quick with the comic relief, said to me, "I hope his heart is ok so he won't have to have a BORING, heart surgery like me." Sorry that your birth defect isn't more interesting to you. "I just had to sleep the whole time, I couldn't even see anything." So disappointing.
Then off I went to bed for another restless night, up at 5:30 this morning with little man kicking, and my heart racing.

Then we were, back in a waiting room, remembering all the other waiting rooms we had sat in. That's something I had never imagined for us, years of waiting rooms, sitting together, waiting to hear news that could change our lives. It wasn't long before we were in the dark room, looking at the big TV, watching our little guy squirming around. With Zane ultrasounds were amazing, a glimpse at our child in utero, what could be better than that. We even saw his little dimpled chin before he was born, it was lovely. All the ultrasounds since Zane have been gut wrenching experiences. Because during Zane's twenty week ultrasound, when we were oohing and aahhing over those cute feet and tiny nose, a huge piece of the puzzle was missed.

All our ultrasounds since Zane have come with the footnote on my chart "mother's first child had tetralogy of fallot" marking me high risk, big bold letters, TAKE A CLOSER LOOK! So we get the long version of the twenty week ultrasound with lots of pictures, lots of measuring, and lots of silence. Because they don't tell you anything while they are doing it. Today the lovely woman didn't even try to make small talk, just told us what we were looking at. "Oh here's his head, we'll measure that, make sure everything is there." Great, I'm a neuro nurse at heart, that should be the most terrifying part. Unfortunately it's not because then came, "Ok now lets look at his heart!" And a tear fell down my cheek as I tried to not throw up on the very nice lady who was smearing goo all over my belly.

After watching echo's for six years Zach and I know just enough to freak ourselves out. They turn on the colors, to show where the oxygenated and unoxygenated blood is flowing, the blue and red. And I turn to look at Zach, who has the same petrified look on his face as I do. The nice woman isn't saying anything, but at this point I'm certain I see a gapping hole in his heart and the colors aren't going where they are suppose to be going. She took lots of pictures and typed "four chambers" which was somewhat of a relief, since I do know lots of kids who are born without all four chambers. Then she went on to measuring his arms and legs, counting hands and feet.

Everything was there, all his toes and fingers, kidneys, all looking good. He was laying in the most bizarre position, sideways, with his head leaned way back. A perfect position to get a great look at his heart and his major vessels (thanks buddy) but a not so great of a position to get the cute pictures of his little feet or his face. He was sucking his thumb and was not to please with being poked all morning. The kind lady printed us a few pictures before leaving us to wait, again.

Here is our little guy. He looks like every baby you've ever seen an ultrasound picture of, but oh so darling!

The top picture, if you squint and look at it just right, is him sucking his thumb. The bottom one is him all stretched out with his head back.

After a grueling thirty minutes in came, I kid you not, Dr. Cory Booker, holding a folder of papers, with a very serious look on his face. He closed the door and went to sit down. "Well, let's talk." No, I have a TET baby sir, I need you tell me if my kid has a gapping hole in heart. Oh, so you're nervous. Well, baby looks great. Everything is fine! LEAD WITH THAT PEOPLE! He was a very nice guy and showed us all the pictures of the baby's heart. He showed us that there was, very clearly, a complete septum between the two ventricles, no holes. That's the picture that heart moms want printed off. The picture of four chambers, a complete septum, and two functioning valves. All babies toes look the same, but that heart, that's a picture I want on my fridge. Sadly they didn't print that one for me.

I left definitely thinking we cannot do this again. I cannot handle the stress and we can't push our luck. The doctor reminded us that we had a 2-3% greater chance of having another child with a heart condition than the average person. And reminded us that we could have genetic testing to discuss the plethora of genetic syndromes that go along with various heart conditions. Zach and I realize that if we were going to do that we really should have done it before we had any more children and opted out of that service. We still have to get a fetal echo for more detailed pictures of the little guy's heart, but for now we are breathing a huge sigh of relief and counting our blessings. I'm praying for better sleep this evening.