Updates from 5/5 and 5/6

From May 5...

It has been 12 days after Emily was born, and she's still in the hospital. The doctors are completely clueless as to what is causing her apneic episodes. The last possible cause could be GERD (gastroesophagul reflux disease), which 80% of babies have. Her reflux has gotten worse recently, so the current Neonatologist she's seeing (she's seen 6 of the 7 in the NICU and PCN) feels very strongly that she needs a barium swallow test. Although he admits that the test will only tell him the severity of the reflux and rule out a bunch of other rare disorders that he says he doesn't really expect to find. Our main objection to the test is the level of radiation she's exposed to because a barium swallow upper GI study has significantly more radiation than just your regular x-ray. Infants are more sensitive to radiation than adults. We are already treating for reflux (i.e. elevating the head of her mattress 45 degrees, thickening bottle feeds, burping often), so I'm not exactly sure what knowing 100% unequivocally that she has reflux will help with. The doctor is already 99% sure she has reflux, and doesn't expect anything seriously wrong to show up on the study.

We were trained with the home monitor yesterday and it was issued to us. We had our Infant CPR refresher course last Thursday. And the doctor was ready to discharge us today (with or without the barium swallow test) until she had another small apneic episode yesterday while we were at lunch. Luckily she recovered on her own without any intervention. After that, he changed his mind and stated that he would be "really, really, uncomfortable allowing us to leave now" and that if we left it would have to be against medical advice and we would be asked to sign a liability waiver. He said that his goal is to be 100% confident that she's not going to have anymore apneic episodes when she goes home with us. While that goal is very admirable, I think it's very unrealistic. Gair and I never expected to go home and never have an apneic episode, which is why we got trained in CPR again and also agreed to a take home apnea monitor. Why would the hospital send us home with a monitor if they didn't think another episode would occur???

The deeper we get into this issue, the more I start to learn that a lot of babies have apneic episodes and a lot of babies have reflux. They outgrow both conditions before they reach 1 year of age. It seems to us that the reflux might be causing some apneic episodes, but it probably is not thecause of the apnea. It could be, but I don't think the doctors know any better than we do. I know that a lot of babies are sent home and have apneic episodes and nobody ever notices. It's common for babies to stop breathing on their own for as much as 20 seconds. That seems like an eternity to us, but it is normal for an infant. Could it be that what Emily is doing is normal and usually goes unnoticed (since she has recovered on her own some of the time, and only needed minor stimulation the rest of the time)? Would she have recovered on her own if nobody noticed the first apneic episode and came home with us? We don't know. We're actually glad that they caught the first episode because if it is something serious I'd rather come home with an apnea monitor than wake up to a SIDS death.

So we're still in limbo. No official discharge date. No progress made. It's very frustrating watching other babies go home each day, and they were much worse off than Emily when all of this started.

From May 6th...

A lot has happened since yesterday. We reluctantly agreed to the barium swallow, upper GI study. Our main objection was that the radiation level was significant for a newborn just to unequivocally diagnose something that they already suspected (GERD). But after weighing the options, and canceling the test twice, we finally decided that the small risk of cancer the radiation may create did not outweigh the risk that potentially severe GERD presented her at the present moment. We spoke to the lady who was going to perform the test, Kathleen. She reassured us that they would use the lowest dose of radiation possible because of Emily's age, and that she would make the amount of time she was exposed to the radiation was minimal. A barium swallow test is like an x-ray movie. Some tests can last as long as 6 hours. Kathleen told us that she may be able to get the results she needs within 20 secs. But she wouldn't be exposed to radiation for more than 5 minutes total (which still seems like a long time for a newborn). I guess it's better than 6 hours. The good news is that they did learn something. They discovered that she has "significant reflux". Kathleen said that it takes a lot to impress her, and she has seen a lot of reflux over the years, and she was impressed! They only fed her 20 cc of liquid (barium mixed in breast milk), and she refluxed almost immediately. So they were able to learn what they wanted to and Emily's exposure to radiation was minimal. I guess this is the best possible outcome considering the circumstances.

The course of action now is to continue treating the reflux. This is what we're going to have to do from this point forward until she outgrows it.

*Emily will sleep on an incline of 45-60 degrees. There is a product called the Tucker Wedge and Sling. http://www.tuckersling.com/
*Thicken feedings. Unfortunately, she will not be able to breast feed exclusively, but she can still have breast milk. We really wanted to avoid using formula. We will have to add a thickening agent to the breast milk for awhile to help her keep it down.
*Have Emily on an antacid, Zantac is what the doctor recommended. She wants to avoid stronger medications because they have undesirable side effects. The Zantac will help prevent damage to her esophagus.
*More frequent, smaller feedings. And pause periodically during feeding to burp. If she eats too fast, it will cause reflux. If she eats too much it will cause reflux.
*She will also be on an Apnea monitor. We've already been given one by the hospital. The alarm sounds if her respiration or heart rate slows down too much. The low limit on the heart rate is 80 bpm. So an alarm will sound if her heart rate drops below 80 bpm. For those that don't know, a normal infant HR range is between 130-150.
*Finally, we will just have to keep an eye on her and keep her upright as much as possible after she eats. We will also have to try and limit crying as much as possible (I know it's impossible to stop a baby from crying, just reducing it is all we will shoot for). Crying is one of the number 1 ways an apneic spell occurs. Because crying causes reflux, if she gets really, really upset, she could have an apneic episode and stop breathing.

So that's the plan. Hopefully she will be home sometime this weekend. It's been the longest 2 weeks of our lives... but at least it's almost over...