Premature Baby Born With Hydrops Fetalis And Hemorrhage??

hun

stay strong! you are such an amazeing woman!!!!! i will keep you and your son in my thoughts

Thank You soo much for the support and please people that read this and believe in the power of God...PRAY!!

I will be praying for you, your family and your little one.

Hi, I see this was posted a while back but I just wanted to see how things were going with your son? My son was born in Dec 07 also with Hydrops Fetalis and also at 31 +6wks.
We nearly lost him several times, but he is home now and doing ok now, except for bad reflux & just recently kidney stones.

I have never met anyone that has had the same situation as me. I am very interested in chatting with you to see what obsticals you had to cross and how you crossed them. Unfortunately my son is not home yet. He had many other complications including chronic lung disease, bronco spasms, heart problems that had to be corrected with surgery, jaundice, hernias, brain hemorrhage and brain damage. We also almost lost our son on too many different occasions some to negligence sadly enough but he is striving and will soon be home. He had to have the Tracheostomy procedure done to help with his labored breathing. It has helped but we now have to learn how to care for him with this new contraption. Its very scary. He also has brain damage from him coding and going into cardiac arrest so he cannot do the things he use to do like suck from a bottle so he had to have a Gastric tube placed for feeding. He also has been diagnosed as never being able to walk or talk after this incident.

My husband and I have waited now over 7 months to have our son home but its seems like it will never come. He will be home soon I hope and pray.

What was your experience like and where are you from? Do you have any illnesses?

Wow, you have had such a traumatic time with your baby boy. I hope he can be home with you soon.
It sounds as though you have had to deal with more medical problems than we did, and we thought we had a few!

I had a trouble free pregnancy until the 20 week scan where they discovered Lachlan had fluid around the lungs. At 31 weeks his heart was under too much pressure from all the extra fluid and I had an in-utero shunt operation to insert two chest drains into him. I delivered him 3 days later at 31 +6 weeks. He was born not breathing, straight onto the ventilator. We spent 70 days in the NICU dealing with his severe respiratory problems. He had Non-immune hydrops with bilateral hydrothoraces, pneumothorax (air around the lungs) jaundice/abnormal liver function, CLD and several infections.
On Jan 1st we were told to say good bye to him and he wasn't expected to make it through the night. But he proved everyone wrong!

His adjusted age is 2 months now and we are hoping the hydrops issues are behind us.
It's hard to find information about this and even harder to find people who have gone through the same thing.

I wish you all the best with your son. He sounds unbelievably strong dealing with everything he's had to go through.

I'm sorry to hear the trials your have been facing. I too had a preemie in the NICU for qiute some time. Not quite as long as you (4months) but still long enough. I know it's a hard thing to go through. My daughter went through everything you said except for the hydrops.....plus several other complications. So I pray for you lil one to grow, thrive and get well enough to come home very soon. I also pray for peace, strength and comfort durring this time. If you ever wanna chat I'm here. Feel free to PM me anytime!


Rachel

Hello i am writing to see if anyone has answers to questions i keep going over in my head. My nephew callum born 04-08-2008 sadly only lived for 44 mins and they have put on the death certificate hydrops fetalis, now r baby was born at 36 weeks 6 days and at 9lb 13 oz. callum's heartbeat never changed right the way through the labour ( sorry i was with my sister-in-law right through her labour & birth) it was always 155 to 160 never went up & it never went down.They had never given Emma ( my sister-in-law) another scan when she asked for a growth scan the denied her this, she said this baby feels massive she even sat in front of a midwife in tears askin for help and askin could she see if Emma could have a caesarian and she said you will ahve to wait till 15th August an ask your consultant. We were not prepared for what happened on this day the 4th August but its so hard to accept as r baby Callum just looked asleep i would like to speak to anyone out there who has been through simular situation as we have to wait 6 to 9 weeks for our baby's post mortem results. Please write to me Thank You xx

Send me a private message and inclube your phone number so that we can talk further.

Hi there i dont know how to do a private message can you tell me how to do it ?? i see you are from America i am from england it might be easier to do private messages to each other.