"My Story..." Monday: Tests, Tests, Tests...

Before little C. could be released from the hospital, there were several tests she had to pass. There were also some training sessions that we, the parents, had to go through.

Her first challenge would be the car seat test. The car seat test involves bringing in the car seat you plan to use with your baby. The nurses put your baby in the seat while still attached to all sorts of monitors and your child stays in there for about twice the time it will take you drive home. What they're looking for here is that there is no drop in vital signs and your baby never goes into distress. For some reason, this test was really hyped up to us but, in reality, it is not a huge deal. Even if your baby shows signs of apnea in the car seat, you can still go home. The hospital will lend you a "car bed" which keeps your child safe while in a more fully reclined position (since many babies do not show any distress in that more familiar position).

They did the car seat test one night and C. passed with flying colors. She didn't seem to care one bit whether she was in her basinette or in her car seat. Test one? Check.

The second test to take on was a swallow study. The nurses at IU Hospital had fast-tracked C's bottle feedings. At this point she was on all bottles and no tube feedings. We were not even a bit concerned about this study. The test involves going to radiology and feeding the baby breast milk or formula that's been laced with a special tracer. The radiology technician essentially takes an "x-ray movie" of the baby swallowing and it is analyzed by a swallowing specialist, often a speech and language pathologist. By watching the film, they can see if there are signs of aspiration or even "micro-aspiration". This is basically when the liquid "goes down the wrong pipe" and can enter the lungs. When this happens to you or me, we cough, often quite hard, to clear it. These tiny babies do not. As a result, the fluid in the lungs can lead to pneumonia and is considered very dangerous.

C's study was done one afternoon and I received a phone call that stunned me. She had shown signs of micro-aspiration and the swallowing expert was advising that we immediatly cease all bottle feedings and resume tube-feeding. I was crushed. Our baby girl LOVED her bottles. She actually got to taste something! It was a true high point of her day to be able to actually drink her milk rather than just have it fed into her bellly through a tube. I didn't feel like it would have been so bad if they hadn't let her get used to bottle feeding only to take it away. Added to that, I had only recently been able to start actually breast feeding her and now that option was gone too. They told me, "Well, you can alway pump all the milk out and then let her use you like a pacifier." I have to say I was pretty offended by that.

I was devastated by this news. So much so that I really didn't want to talk about it. I left a message on my parents' answering machine telling them that she had failed the study and I couldn't get into it yet. I said I'd talk to them later on. It was hard enough for me to relay the information to my husband. He, too, was really upset by the news. Test two? Check... but not good.

Hard as it was, we recovered from that shock and disappointment pretty quickly and got ready for our little girl to take on her final test- the sleep study. The sleep study involves hooking up the baby to a special monitor that records all of her vital stats while she sleeps. They can see exactly how the heart rate or O2 saturation might fluctuate. This is important for determining 1) if the baby needs to go home on supplemental oxygen, 2) if so, how much, and 3) if an apnea monitor is appropriate.

Getting this study completed was a comedy of errors. The first night it was supposed to be conducted, the equipment delivered to the Special Care Nursery was inoperable. They weren't even able to attempt the test. I was angry about this when they told me the next day. Every little thing that went wrong delayed our going home. The next night, they hooked C. up to all the equipment and ran the test. When I called the next day for the results, I was told that the nurse had forgotten to turn on the part that "records" thus making the entire test useless for analysis. I was gettting a tad furious at this point. Seriously. I can handle that things don't always go perfectly, but I was getting annoyed with the ineptitude that was being displayed. Finally, the third night they attempted it, the test went through and the information was gathered.

The end result? Our little girl didn't need any supplemental O2. She breathed just fine on her own. At least, that's what the study said. The medical team at IU, however, panicked and told me, "We're sending her home on an eighth of a liter anyway. We just don't send 24-weekers without oxygen. It's never happened before." A respiratory therapist later told me that that amount of oxygen was a joke. Our nurses from back at Riley thought it was silly to base her O2 needs on how early she was; if she could breathe, she could breathe. That's it.

Nonetheless, the decision had been made and we were willing to accept it if it's what we needed to do to get home.

All that remained was for us to go through appropriate training to be able to handle the special needs of our, still tiny, baby girl.

Next week I'll tell you about what we had to learn...