Guest guest Posted March 2, 1999 Report Share Posted March 2, 1999 Hi Lori - I lost twins born at 26 weeks, it's never easy, always hard. If I were you, and you have a rapport established, I think I'd convey to her, that her spouse be up there with their child. Does she have support here, like her folks, or some sort of family? What a lousy situation Hugs, you sound like you need one. Marna [OBnurses] Choked up >From: RBRNUT@... > >I work full time in an ob/gyn office. I also teach childbirth classes....One >of out patients came in preconception....wanted to get pregnant. Took her >through all the getting pregnant....pregnancy test....Yippee! We are >pregnant. She came in at about 15-16 weeks and the baby had an arrhythmia. No >big deal. It was regularly irregular. We usually do not jump the gun and send >them for the billion dollar workup just yet. The next visit, it really >sounded odd to me. Irregularly irregular. I made the doc listen. We sent her >to our perinatal referral guys who gave her worse case/best case scenario and >diagnosed Epstein anomaly the heart. She came to childbirth classes even >though delivery was planned out of town. We have kept in touch even though >she has been transferred out to the perinatal boys...everything has been fine. >Today, she calls me and tells me she had an emergency section. She noted >reduced fetal movement. Went in, ultrasound showed pericardial effusion and >edema of the heart. Baby was born at 32 weeks and weighed six pounds from all >the fluid. The docs told her it was worse than they thought.....they shipped >the baby immediately. My heart is in my throat. I want to tell her to send >her husband there....I was thinking of the horror if the baby does not make it >and it was there alone......how do you say that to someone who is dying inside >already that they wisked her baby away after she saw it for only >moments....and all she has is a lousy polaroid to look at while the baby is >five hours away.....and if the baby doesn't survive...this is all she has. I >am just hurting for this poor sweet baby and the parents. I do not think I >could handle the loss of a baby. Has anybody heard of this anomaly???? My >doc kind of laughed when he saw me so tearful today. It made me know that they >react clinically while I react as a mother. Lori > >------------------------------------------------------------------------ >Come check out our brand new web site! >http://www.onelist.com >Onelist: Making the Internet intimate >------------------------------------------------------------------------ >Welcome to the OBnurses List at www.onelist.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 1999 Report Share Posted March 2, 1999 Lori, I once saw a 24-26 weeker born with his heart totally on the outside! I want to say the mom's labor was induced, but I do not believe in abortion, so I would not have had her as a pt. Maybe went into PTL on her own. A young 17-18 years old. Anyway, she did not want to even see the baby but Dad did. Every Pediatrician, Ob, and nurse came to see this baby. The baby was perfect, beautiful, just the heart was on the outside of his body. The baby lived for about 4 hours and you could just stand and watch the heart beat. Very sad, for the parents. I have found comfort in knowing these babes are going to heaven and get to bypass this awful world and the parents need all of the support. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 1999 Report Share Posted March 2, 1999 I'm not familiar with the anomaly but the scenario is one I have seen often as a NICU nurse. We try to accomodate the FOB so that the family can feel closer to the baby and the transferring hospital seems to let the section patients go home about a day earlier to get to their baby and we also provide assistance for the mother in the unit - a place to nap, etc. Please keep us posted on this baby's fate. As a mother and a nurse, my heart breaks for this family! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 1999 Report Share Posted March 2, 1999 In a message dated 3/2/99 1:21:07 AM Eastern Standard Time, RBRNUT@... writes: << I want to tell her to send her husband there... >> Lori, my heart goes out to you and this family. YES, YES, YES, send someone. We do not often have to transfer babies out of our own NICU, but when we do its usually something REALLY bad. Like undiagnosed need for open heart or something. Our unit doesn't do many surgeries. I always say send a " representative " from the family. If Mom is very sick and not stable we usually suggest a grandparent of the baby since Dad wants to stay close. Its important for them to have someone their for baby. We even have the ability to do phone calls with video conferencing for Mom. ASAP we send Mom to be with baby. Most of the time if Mom is stable, we can send her within 24 hrs. to be with baby as well. Most bigger hospitals have medical social workers that can make arrangements for all this. Our are wonderful, we call them miracle workers. They arrange for transportation, stays at hospitality houses, help with other childcare for the sibs., etc. I'll keep them (and you ) in my prayers, Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 1999 Report Share Posted March 2, 1999 I would encourage the husband to be with the baby. He should not go alone. Take someone with him to read the map, be with him in the car for that five hour trip. I always worry that the person traveling might get in an accident on the way there because he looses focus or tries to read the map. (We all know he won't stop to ask directions if he gets lost.) Mom should be able to travel in a couple of days if she goes with someone in a comfortable car and can take a 5 minute stretch/walk every hour on the way. The main thing is they need to do what they can today, because you don't know if the opportunity will come again. To be with that baby, have those moments with it. I have taken care of babies with his condition, but it is like everything else, there are degrees of severity and no guarantees. I would play it safe, make the most of every minute. Take lots of pictures. Indecently, when parents get those polaroid pics, encourage them to take them to a photo place and get negatives made. Those polaroids will fade with time. Negatives are easy and cheap to get. I am home sick with the flu today..............and I know I will spend a lot of time thinking of these folks since I don't have to clutter my mind with work issues. And for you, Lori. What a wonderful person you must be. It is obvious in your story that you care about these people. That caring comes through and means so much to them. Thank you for taking the time to share the story with us. You, as well, are in my prayers today. Betsy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 1999 Report Share Posted March 2, 1999 In a message dated 3/2/99 2:10:12 PM Eastern Standard Time, Basinbaby@... writes: << I am home sick with the flu today.... >> Feel better soon Betsy! Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 1999 Report Share Posted March 2, 1999 In a message dated 3/2/1999 12:21:07 AM Central Standard Time, RBRNUT@... writes: << My doc kind of laughed when he saw me so tearful today. It made me know that they react clinically while I react as a mother. Lori >> Dear Lori, I want to tell you how sorry I am for you, the baby and the baby's mother. It is never easy. We need to use these times to " educate " our doctors. The receive little to no training on grief and dying. One of the first things I did when I began the perinatal loss program at our hospital was to provide inservices (with CEU's) for the doctor's office staff. I also included an invitation for the doctor to attend and (surprise, surprise) not one showed up. I've since learned the best way to handle this is on a case to case basis and spoon feed them little by little. Even the most resistant doctors have come around. Granted it has taken years, but now when they have questions or difficult questions they call ME! patience is important. With the doctors, with the patient and family members and most of all with ourselves. , RNC Quote Link to comment Share on other sites More sharing options...
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