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This will never end!

Preemie-l discussion forum       http://groups.yahoo.com/group/preemie-list

Joel complains, "Well, Gavin was supposed to go home on Sunday. Everything was set, he is taking all of his feeds by bottle, and really has no medical problems. Unfortunately just before he was supposed to come home the Dev therapist was feeding him, obviously not paying enough attention and let him stop breathing, therefore he had a brady just below 70. The doctor was watching this and assumed he was not ready. As long as we pull the bottle out as soon as he starts showing signs of slowing his breathing both me and my wife can usually stop him from having brady’s. Have any of you had this problem with feeding (stop breathing momentarily), and did your baby come home or stay until they could take the bottle without any mistakes. Rather than this Gavin is ready. He has had his circumcision and has passed all of the other requirements. The Doctor now has set a new requirement though (that we never saw her set on any other baby), Gavin cannot have any brady’s, Even with feeds. The NICU policy is that a baby cannot have a brady for 5 days, but if they have it during a feed then it does not count. Well Gavin cannot even have them with feeds now. I guess we have a long time to wait, because from what I understand even full term babies sometimes have brady’s with feeds. 108 days and counting, and there is nothing like having your heart broken when your ready to have your son come home only to hear that your dream will not come true, and now they don’t even know when they will let him go."

Suzanne advises, "Oh, that’s tough. :( I’m sure you are aware, but feeding can cause bradys because the milk hits a nerve in the back of the throat and the brady is the response. The ET tube caused a lot of them for John Henry.
We had a couple of nurses whose egos caused them to try to get JH to drink enough in a certain time and they caused him to brady — whereas he never did with the other nurses. (One thing they’d do is use nipples with too large holes, even though JH’s suck was fine, even too strong for a preemie nipple, or keep the nipple in his mouth when it was obvious he needed a break — as you and your wife have figured out.) If possible, see if you or your wife can take over most feedings, or request that certain nurses do it, ones who have had success with Gavin.
Will you have a pulse ox at home? You might want to see if your insurance company will cover one. The neo prescribed one and our insurance company covered it. We also had to have an apnea monitor even though John Henry never had apnea, a rule for all babies coming home on O2. We suggested a pulse ox because John Henry was escaping a bit earlier than they had planned (4.5 months — definitely not earlier than we had planned!) and we thought it might make the neos feel more secure, and us too." 

Jennifer relates, "I am so sorry to hear that Gavin isn’t coming home yet. You must be so disappointed! I remember the same thing happening to a couple at our NICU. They had twin girls and really wanted them to come home at the same time, but one girl would brady every time a nurse fed her. They took off from work and took shifts at the hospital to be there for all her feedings. She came home in a week with her sister! I know not everyone can do that, but I bet any feedings you guys could do would really help him out. Also, do you have a primary nurse? I know we had a couple of nurses who usually took care of Lily, and they helped us know how to feed her successfully. Maybe your primary nurse could write something in his chart about how to feed him without making him brady? I hope Gavin comes home soon! I was losing it after 85 days, you must have the patience of a saint!"

Kimm responds, "Joel - I feel for you. Hang in there - we are at day #83 in the NICU, and only taking 1 bottle a day, and Faith only weighs 3 pounds, 8 ounces (slow grower). We have apnea spells every so often, but always during feeds. Why won’t they let you bring Gavin home on a monitor? If he is ready regardless, a monitor should take care of that. I would question the top doctors in your NICU with regard to this. One thing I have learned is that the squeaky wheel gets the oil, and it is never crazy to ask lots of questions and expect, if not demand, answers where your child is concerned."

Andi remembers, "This happened to us, too. Ginny had never had a brady at all and the day of her release, she had one. I really think if a well-meaning nurse hadn’t been walking by and jumped in, it would have resolved itself and we would have been home. So, we were on the five day wait. Two days later it happened while she was eating. So we started again. She spent five days just fine this time and we took her home one week after her original date. I was a nervous wreck during that time and if her heart rate dropped at all I would do something to make it jump, like pick her up really quickly, etc. It was very frustrating and we were only there one month. I really wanted the monitors to go away! Hang in there — you’re almost home!"