Gastro- what? Can you repeat that?

Have you ever heard of gastroschisis? Ya, me neither. Well, not until I got a phone call (almost a year ago, in fact) from the genetic counseling department at our hospital. I was 16 weeks pregnant with my first and only child.

It is a phone call no expectant mother wants to receive. Your heart quickens, you feel faint, and your mind goes in circles thinking about what you will do if you hear something come out of that person's mouth that is anything but "everything is fine, baby is great." This all happens before the person calling finishes identifying themselves, and where they are calling from. 

Let's just say I threatened to show up at the doctor's office and NOT leave until they told me everything. They got me in right away, told me what I needed to know, and sent me on my way. I still barely knew what gastroschisis was, and what baggage it is capable of carrying with it. So, for those of you who are as in the dark as I was a year ago, this is for you:

From Dictionary.com-

"gastroschisis  gas·tros·chi·sis (gā-strŏs'kĭ-sĭs) n. A congenital fissure in the abdominal wall usually accompanied by protrusion of the viscera." 

My simpleton definition-

Gastroschisis, pronounced gas-tro-ski-sis. An abdominal wall birth defect where there is a hole to the side (most often to the right, usually unheard of to the left) of the umbilical cord. Through this hole a baby's intestines and sometimes other organs stick out. 

I cried. I yelled. I screamed. I felt some extreme emotion. But I was (barely) held together with this simple knowledge- I was going to have a daughter. And I would name her Nora. And I would love her, and squeeze her, and call her George. Nora. Nora-Bug. Pumpkin. Sweet Pea. Sugar. BeeBee. Bug. Bug-a-boo. I think you get the point.

After reeling in some of those emotions, I decided that I was going to enjoy the remainder of my pregnancy as much as possible. After a very miserable first trimester, I felt I owed it to myself. I had a baby shower, made my daughter's bedding for her crib, did maternity photos with my husband (and yes, I'll share whether or not you want me to, hehe). I came to accept my daughter's fate, even the idea that I may lose my daughter. It is important that you note, acceptance doesn't always equal happiness.

The day I was at 36 weeks gestation, my little girl wasn't beating on me first thing in the morning like usual. I did fetal kick counts, called Labor & Delivery, did fetal kick counts again after trying to give Nora a bit of a sugar buzz. She moved, but barely. It was off to the hospital for me, where I would stay for two days being monitored, and finally end up delivering on the third day.

Nora was born September 26, 2011. She was delivered via c section, and had what we like to refer to as a "rough start"- she aspirated amniotic fluid and quit breathing, and her heart was weak. I was able to see her (notice, "see", not "hold") after I was wheeled out of the OR. A nurse was breathing for her, but she was stable. 

Here is a quick(ish) rundown of Nora's NICU journey- I don't want to confuse you or bore you too badly. At birth, after being stabilized, Nora's intestines were placed in a silo (essentially a clear, sterile bag suspended above her abdomen) so that the doctors could watch the health of them and make sure moisture/heat did not leave her body rapidly. At two days old, Nora's surgeon took her to the OR to place her intestine into her abdomen. They were unable to get a good IV or PICC line in her body, so they had to surgically place a Broviak catheter into her chest (often used for cancer patients receiving chemo). They were then able to do surgery on her abdomen, but because her abdomen was so tiny, her intestine didn't all fit. The solution: Don't sew her skin together. Place a surgical graft over the spot where she doesn't have enough skin. Apply Wound Vac therapy (promotes new cell growth with gentle, continuous suction), and let her skin grow over the patch (this therapy was required 24/7- we even came home with a portable unit).

From there, we had to let her body get strong enough to remove the ventilator. It was a tight fit in there! After the ventilator came off, we were able to hold her. She received TPN (total parental nutrition) for roughly the first two weeks of her life, because she couldn't nurse or take a bottle. A tube had to be placed in her stomach to suck out access bile that her stomach didn't know how to digest. Once her stomach and intestine "woke up" and started digesting the bile it was producing, we were able to slowly introduce her to breast milk. We started with 5mL. Then worked up to 10mL. Then gradually up to 20mL. She plateaued, and wouldn't eat more. The process of increasing quantity continued, but only because the rest of the food she wouldn't eat was given to her through a feeding tube. Her goal was 60mL, or 2 ounces every 3 hours. As feedings increased, TPN decreased. Finally, something clicked. She started eating full feeds by herself- no feeding tube required. After 29 days in the NICU, Nora proved she could eat, poo, pee, and grow. 

Nora coming home!

Fast forward to her being 3 months old- she was finally free of the Wound Vac therapy. I still had to keep a bandage on her belly for a few extra weeks, but it was better than carrying around that Wound Vac!

Nora at one month old

Fast forward again to now- Nora is a beautiful, strong, goofy 7 month old. She has a special belly button. She is smaller than average, but she is growing well enough. She does have GERD, and throws up frequently. She is on medication for it, but it doesn't do very much for her. We are going to take her to see a specialist this month. The cool thing about Nora is that it doesn't matter how horrible she feels; she will smile and flirt at anyone who looks her direction. Even that baby in the mirror who looks an awful lot like her.

If you have not picked up on it already, this blog is about my life with my daughter. Many posts will be about the things she experiences because of the condition she was born with. Some posts will be about babies like her. The rest will be about... well, anything I feel like telling you about. 

So, for now, you've learned some things about Nora. You'll learn more, if you keep reading future posts of course! And I might tell you something about myself- but that is if you are lucky ;)

So for now, I'll say my goodbyes. It is time for me to be off and be a momma, because Momma Loves Nora!

-Tiffany (aka Momma!)