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Babystone06
09-04-2007, 12:30 PM
Hi, I have a 13 month old daughter that was born at 34 weeks. I had low amniotic fluid for all three of my kids (Katelynn 13 months old, Emma 2 1/2 years old, Ethan 3 1/2Years old), which required induction. Katelynn was born with congenital pneumonia and bad lungs. On her third day of life, she was put on ECMO (Heart and lung bypass) for 6 days. She was released from nicu at 30days and required 1/4 of liter of oxygen. From the time she was released till Dec 20th she was in and out of the hospital for bronchitis, eating and respiratory issues. She came home drinking from a bottle but when she was 2 months old she starting throwing up her feeds which led to a food adversion and her needing a g-tube.

On Dec 20th Katelynn was admitted to ICU for respiratory issues that led to her needing a ventilator to breath. In Jan she was given a tracheostomy so she could be more comfortable on a vent.

Katelynn has had ct scans, lung biopsies and this july has even seen a lung transplant team in st. louis so she could go on the waiting list just incase down the road she needs one. She has been in ICU since December 20th (9 months). We have been told she has the last stages of brocopulmonary dysplasia. The doctors believe that she just needs to grow new lung tissue, which is a very slow process. The doctors are expecting her to be in the hospital for another 6 months to a year. The main thing is that they have to get her off the ventilator. They have started the weaning process, she is taken off the vent 2 hours, twice a day now. The problem is that she gets sick every 4 weeks and it sets her back. She currently weighs only 14 pounds. Everytime she gets sick she is taken off her feeds for a few days which causes her to loose weight.

I have been reading your message boards every month and i was wondering if anyone else has similar issues? Does anyone else have a child with BPD?

Babystone06

JWorthington
09-04-2007, 12:44 PM
Hi and welcome! Sorry your little princess has had such a rough start and sorry that she is in for such a long hospital stay. there are plenty of parents on here with kids with BPD. Our situation is different, Sam has Post Infection Bronchiolitis Obliterans, but like Katelynn he has to wait for new lung tissue to grow before we can get him off the O2 (he isn't on a vent). His lungs are permanently damaged, but with time he should be able to ditch the O2.

Our kids are very resilient, it is amazing what young bodies can recover from. I wish you all the very best.

Juliex

alizesmom
09-04-2007, 06:16 PM
Welcome to the group. Alize has BPD but I don't think he had it as severely as your little one. I don't know all of the details of his early life since we got him when he was 20 months old. I pray that all goes well and she gets off the vent and puts on weight and gets home sooner than expected. Karen

Ann
09-04-2007, 09:08 PM
The most difficult place to get well and stay well is a hospital. Have they said why you can't bring Katelynn home on the vent? Kids do so much better at home -- they stay healthier and they make greater strides.

Good luck and welcome.

Ariana'sMom
09-04-2007, 09:14 PM
Hello and Welcome

Babystone06
09-04-2007, 09:25 PM
The reason why Katelynn can't come home on a trach is because the doctors are closely monitoring her and weaning her. If she can't come off the vent or if she gets progressively worse or falls far behind developmentally, then she will need a lung transplant. I don't think they feel comfortable sending her home just yet. They hope that she will come off as the months pass and she grows new lung tissue and is able to wean off the vent. She is being closely monitored by the transplant team. The transplant team do not want to wait to long if they see that she is not improving. They tell us it will be a slow progress. She is on room air again. And sprinting 4 hours a day. We hope she continues this trend.

Ann

madelyn and rynns mom
09-04-2007, 09:39 PM
Hello and Welcome to the boards!!

Love Kris

Ariana'sMom
09-04-2007, 09:41 PM
Sorry about that. I heard that transplants on babys is hard. Hope if it has to happen it goes great for you. They were going to removy my daughters lung and leave her with just one lung but when the Dr. went in to remove it he said it looked better than he thought and left it and fixed her heart problems instead. We got Lucky. I hope you do to.

Ann
09-04-2007, 09:46 PM
Btw, St. Louis Children's Hospital is a wonderful place and the lung transplant surgeons/team are the best. Did you meet Dr. Huddleston or Dr. Ghandi? Dr. Huddleston has cut on Jack a few times. I hope Katelynn can successfully wean from the vent very soon. :)

Jacob's Mom
09-05-2007, 05:21 PM
Hi Ann, I hope Katelynn continues to get stronger and can get off the vent and can avoid a lung transplant. I'll be keeping her in my thoughts.

I noticed you are in Orlando. Is Katelynn at APH? My son was born there 5.5 years ago. We've since moved from Orlando. My son's pulmonologist was Dr. Livingston and his neonatologist was Dr. Hardy.