Day 62- Fourth, and hopefully last, surgery!

Anya did well through surgery. They went in through her old incision, so the only ‘new’ scar will be the g-button site. That being said we are still seriously considering getting Anya a hat that says ‘You should see the other guy!’ She has a scar on her neck from ECMO, the scars from her central line, the scar from her thoracotomy and the accompanying chest tubes, the CDH repair/Nissen scar, and after it gets pulled out (after about a year?), the g-button scar.

Dr. Kays checked out her whole GI system and can find no reason for the stomach emptying issue. After the surgery he went ahead and did a bronchoscopy (scope looking into the lungs) to look for any issues with her trachea. He was guessing she had a fistula between her esophagus and her trachea: that is an abnormal pathway between the two. He found nothing abnormal. So Anya is just weird. Weird is ok.

I would bet money that the stomach emptying issue will go away when she is extubated. It seems to be a bigger issue when she is intubated, when there is a lot of gunky mucus in her stomach. The mucus plugs up the tubes meant to keep her belly from getting air in it, and in the past she has thrown it up. Whenever she was extubated her belly did not blow up, and she did not throw up. Anyway Anya cannot throw up now anyway, so no tequila shots when she turns 21!

The Nissen like I have mentioned before is done to prevent reflux, but it also keeps her from throwing up. This kind of reflux is not like your average heartburn, it can be so severe that babies are not able to eat enough to grow. Additionally, it just makes eating an unpleasant experience, when it is so easy to reflux and throw up. In Anya’s case, we are wondering if the reflux was causing some of her breathing issues. It could be that she has needed so much energy protecting her airway from reflux that she wears out faster. Now that reflux is out of the picture she should do better.

I have to admit now that this surgery made me a little nervous. This is completely normal I know, but when you look back and see what Anya has been through it seems kind of ridiculous. At less than 24 hours old, Anya was operated on, having less than stellar blood gases, to repair her CDH. She went on ECMO only hours later and managed not to bleed out. Then while she was on ECMO, she underwent the thoracotomy that removed 90 cc of blood from her chest, and managed not to bleed out again. Did I mention that she was so unstable they did not take her out of the NICU for both of these? By comparison, we look at today’s surgery: a much more stable, healthy baby who was able to go down to surgery for a very routine, simple procedure. This is why doctors cannot treat their family members! Being a parent makes you completely irrational.

Now that the procedure is over, I can speak of anxiety. There is an unwritten NICU parent rule that you do not talk about Bad Things, lest talking about them make them more likely to happen. It does not matter if you are Christian or Buddhist or whatever. This is most certainly true.

We are very thankful everything has gone so well today, and are very hopeful to what the next few weeks will hold. I am not making any big plans for the time frame when events will happen; I will just take one day as it comes and ask God for more patience. Thank you everyone for all the support you have been giving us!