So while I was gone with Kassie by Mom called my cell phone to say that Lena had just really scared her, she had thrown up, a lot, and seemed to stop breathing when she did it. She said she turned her over and slapped her back and she seemed fine again. i figured it was just a freak accident, after all she likes to choke herself by sticking her fingers too far into her mouth. Did I need to rush home? I was assures all was well and I could finish what I needed to do, get Kassie’s medicine.

When I returned home all was well, Lena was back to normal and being her post-operative needy self. So freak accident it was. We went on about our regular business, had supper fed, the girls, put the girls down for their evening nap. Fed the girls again, put them to bed. All was well and “normal”. Definitely a freak occurrence. Boy was I wrong.

Lena woke up at 4am. She woke up normally, acted normally etc until I fed her. When I started feeding her I felt something warm down my arm and a noise I had never heard her make before. I quickly realized she was gagging. I turned her over and slapped her back. Everything was okay. Quick inventory, what just happened? She threw up, why? Not Sure. Tried again. This time seemed go better. She ate 2.5oz then all of a sudden she was doing it again, the noise and this time the vomit was larger and much more obvious what was occurring. OK now I was scared. All I could hear in my head was the voice of the neurosurgeon, bring her in to the ER if she displays any signs of shunt failure such as increased irritability, vomiting…. I DID NOT WANT TO TAKE HER BACK TO THE HOSPITAL WE JUST LEFT! I decided to wait and see what would happen. Maybe it was a freak thing. Maybe he tummy was just sore from all the drugs? So I decided to keep her upright on my chest and stay up with her on the couch until I knew she was okay again.

We sat down on the couch and immediately I realized that she felt warmer than usual. Upstairs to get the thermometer. The second it went over “normal” I raced into our bedroom to tell Wayne that I could not wait until morning, I had to take her to the hospital NOW. Now I was scared she was getting an infection of some sort. Great an infection in our brain surgery incision what could be worse. I was freaking out. Then, she did it again, she threw up all over me a third time. Now I was really freaking. I called the ER and told them we were coming however, they informed me that they couldn’t page the neurosurgeon until we got there. Mad dash to get all of our stuff, good thing I hadn’t unpacked my bags yet. Wayne needed to stay home with Kassie and I needed someone in the back seat in case she threw up on the way, now I was scared she wold choke to death. Wayne woke up Faith, his oldest daughter and told her to go with me.

When we got there the neurosurgical resident was paged and her vitals were taken. The fever wasn’t as bad as i thought. Good. They gave her Tylenol and we waited. And waited. When the resident came he inspected her shunt and incision and all seemed to be good. Great. He gave her the once over and couldn’t find anything wrong. No ear infection, no thrush no nothing. So we started talking flu or some other virus. He definitely didn’t think it was the shunt. But… just to be safe they wanted her to have another CT scan, blood work and a urine test before we went home. It was now 6:30am. The CT scan technicians didn’t get to the hospital until 8am so we were in for a wait. The resident agreed with me however, that we should try to do the scan with as little sedation etc as possible, she had been given enough drugs in the last 48 hours. 

What a gong show of a day. I tell you communication between health care professionals leaves something to be desired. I knew what was going on better than the nurses did. The doctors would explain what they wanted done to me then give a reader’s digest version to the nursing staff. We didn’t get our scan until almost 9:30am because the nursing staff thought they had to wait for a sedation order. I had to explain a few times. But Lena is a rock star and had her scan fully conscious again and did great. The technician, Jody is great. I don’t think too many of them would have agreed to even try.

To summarize our day, we spent a total of 7.5 hours at the hospital. Most of that time was spent waiting for someone or something. During that time I accompanied her on yet another CT scan and had the honor of holding my daughter down so that nurses and phlebitis’s could torture her a total of 3 times. The first time they tired to draw blood they tried the old fashioned way. They tried to use the same spot that they had used pre-operatively since she is such a hard poke and their aren’t too many veins to find. She screamed. They could not get a vein. No blood. Then they tried to get enough from a heel poke. She twisted and screamed until she was blue in the face and they could not get enough blood. The lady finally gave up. She called it a rest but she never came back. I put an end to that. I told the nurse to ask the doctor is he could do without the blood tests since a- she just had one the day before and the day before that b- she was herself again. Through all of that she had eaten 8oz, been tortured, screamed etc and had not so much as spit up (which is normal for her). They relented and we waited for the doctor to get out of surgery.

When we saw the surgeon again (not the resident) he decided that she looked and acted well enough that he could do without the blood tests, he still wanted the urine test and then we could go home. We discussed the possible causes of this very stressful ordeal. We decided the the cause was one of two things, a viral infection (which it didn’t appear to be since she seemed fine now) or that the air trapped in her incision (that he had warned me post operatively can cause head aches) can also cause nausea in some people. We think she is one of them. Good news but what a way to find out. He also reassured me that I did the right thing to bring her in, shunt failure symptoms are remarkably the same as the flu, when in doubt take her to the ER. So now as long as she has that shunt, every time she gets sick I will worry about whether she is just a kid being sick, or if we need brain surgery again.

The doctors and nurses say that preemies “catch up” by the time they are 2-3 years old. I think those studies related to older preemies. After reading and talking to other preemie families, micro preemies are always micro preemies, they just grow up. they never “catch up” the same as their peers. There is always something different to worry about, to be scared about and to wonder about. It makes me love them that much more. 

ps. Kassie doesn’t really like to take her medicine. She tought she could try to hide from me. Would you want to force that face to take yucky medicine? Heart breaker I know.