what health stissues has your preemie struggled with??

Cheryl - posted on 10/17/2009

My son was a 24 weeker. He had 2 ROP laser surgeries, PDA, fundoplication, g-tube, seizeres, apnea monitor, 1/8 L of O2 (respitory distress), PVL, CP. He made it passed his first birthday and then passed away days later, low heart rate alarm went off.

Angela - posted on 10/16/2009

I have a former 24 weeker who is now 10 months old. We've struggle with reflux since she was extubated in January. The doctors have all reassured us this is from her being intubated for so long and she will outgrow it. 

Hi My son born at 24 weeks too had severe reflux but out grew it when they switched him to a  formula that has the soy and milk proteins all ready fully digested (Neocate) - this made the world of difference. He was so bad he was in kids hospital for 6 weeks and put on tube feeds. He is still a fussy feeder but is doing so well. He is on the light side by tall. Hope this helps. 

Angela

Angela - posted on 10/16/2009

Toby was born at 24 weeks and 4 days gestation, he has had ROP Grade 3 and needed laser eye surgery and we have a follow up in a week to see if he needs more, he has Chronic lung disease, he has asthma and is on flixotide and ventolin when needed, and he toe walks but can stand flat footed but may need special shoes to get him walking flat footed if it doesn't happen naturally soon.



IN hospital he also was ventilated for 17 days in total, on CPAP for 55 days, Had collapsed lungs, infections, milk intolerance, PDA issues but eventually closed.... etc the typical issues for a micro prem.



BUT he is so gorgeous and for a 24 weeker he hasn't shown signs of Cerebral Palsy yet (so risk now low), he didn't have any PVLs (brain bleeds) and is only very mildly delayed to his corrected age. We have been truely blessed.

Amy - posted on 10/13/2009

i have twin boy and girl born at 25 weeks, my little boy has grade 2 bleed on brain,pda,rop,respiratory distress syndrome,chronic lung disease,2 colapsed lungs,on ventilation for 3 weeks,2 courses of steriods,cpap for 3 months,many blood transfusions,extremely low birth weight 789g,reflux,grade 3 nep,jaundice,undescended right testie,weight loss,in nicu for 102 days......... my little girl pda,rop,respiratory distress syndrome,chronic lung disease,heart murmur,on ventilation for 3 weeks,1 course of steriods,cpap 2 1/2 months,many blood transfusions,extremely low birth weight 755g,reflux,grade 2 nec,breech,metabolic bone disease,jaundice,surgery at 3 months old for ingranal hernia which is rare in girls,in nicu for 97 days........

Michele - posted on 10/08/2009

Yes I have had kangaroo time its amazing. I have done skin to skin with both. Ryan though is in no condition to come out when we tried last night he couldnt handle it. Josh we hold everyday. He is so alert he stares at me and smiles makes my heart melt then i look over at Ryan and my heart breaks. Its like one sec im happy next im worried and terrified. Ugh this rollarcoaster of emotions.

Sharon - posted on 10/08/2009

Poor wee button. It is difficult to watch them struggle so hard, doesn't seem fair. C-pap is a good thing, Toby was on it for nearly 4 weeks, after initially being on the ventilator. Fingers crossed for the next round of meds. have you been able to do kangaroo cuddles?

Michele - posted on 10/08/2009

Thanks you Sharon. Josh is doing great his feedings are up to 20ccs the highest they go and his pick line came out. Ryan on the other hand the 1st round of meds for PDA didnt work he has alot of fluid in his lungs and his heart rate keeps dropping and he is having a hard time breathing. He is back on C-pap. They are going to start the 2nd round tomorrow i think. Im really worried :(

Sharon - posted on 10/08/2009

My son was born at 28wks , 1lb 7oz, he is now 6 Food and weight gain in general has been an ongoing battle- and still continues to be. He had a grade 3 bleed which cause minor brain danage, a pda which resolved itself, has had two operations for hyperspadias and undescended testicles, he needs glasses and has minor physical issues. He gets very anxious over new situations and prefers to have established routines. He had a lot of intervention in his first three years, but now is a bright, enthusiastic and energetic 6yr old boy completely obssessed with star wars (oh no, wait, that's only a problem for me....lol)



Michelle, bigs hugs to you. You are at the beginning of a long journey, be kind to yourself. big hugs and my prayers are with you and your family.

Michele - posted on 10/05/2009

My sons were born a week ago at 28 weeks. Ryan has PDA a artery in his heart hasnt closed and they started meds for that today. Josh has a grade one brain bleed which they say isnt that big a deal and usually resolves itself. They will prob be in the nicu till there original due dates which was this Dec. We are told we are in for a rollar coaster ride. So far this ride is making me nuts I feel so bad for what my boys have to go though.

Gennifer - posted on 09/29/2009

My child has a speech delay and as well as asthma uh its a struggle every day!

Amy - posted on 09/29/2009

My daughter was born at 36w 5 days and had no problems but her brother was born at 35w 4 days and had very immature lungs, he was severe jaundice, he then developed metobolic acidosis and he was just diagnosed with optic nerve hypoplasia, but at almost 10 months he is happy and doing great dispite his lack of eye sight.

Sabrina - posted on 09/25/2009

My son was born at 35 1/2 weeks and he quit breathing a couple of times after he was born. He had RSV in March and he has had several colds. Right now he is on an apnea monitor since June when he turned blue.

Chelle - posted on 09/25/2009

My son came early cuz I had severe pre-eclampsia

Sara - posted on 09/25/2009

Wow, I guess we were really lucky....our 1 year old was born 7 weeks early & was never put on oxygen, she was only in the icu for 2 weeks while she learned how to eat. But, while she was in there I was scared to death & just seeing the others that were smaller & having a harder time broke my heart. I feel for all of you, although we haven't had any major problems, I know how stressful it can be. Were there any diagnosis as to why your children came early?

Chelle - posted on 09/20/2009

My son was born at 33w6d and has reflux since birth. Now he's considered severe GERD. He also has asthma and we just found out recently he is aspirating his reflux. We have been having blue lip episodes daily and he usually is only awake for 3-4 hours a day and they think him aspirating is why this is happening. He has had one barium swallow and is having a modified barium swallow done next month. My son aslo has tracheo and brocnhiomalacia which causes him to wheeze almost constantly depsite meds.

Tanya - posted on 09/20/2009

My son Gabriel was born 3 1/2 months early, he spent his first 4 months in the NICU in Pittsburgh. Gabriel was born with seizures, blood on his brain, and lack of oxygen to his brain. Later they found out he has a paralyzed diaphram and had to do major surgury to fix it at one and 1/2 months old. The blood on his brain went away and he stop having seizuers...he came home on a apnea monitor and oxygen...the monitor was only for 10 months but he was on oxygen until he was 4 yrs.old. Gabriel has had lazer eye surgery, tonsils removed, 2 barium swallows, momo and pnuemonia countless times. Gabriel is now 10 soon to be 11, he breathes with only one lung, he has severe asthma, and acid reflux, but when you see him playing and running with the other kids you can't even tell. I give a big thanks to all who had a hand in his recovery..I do alot of free charity stuff for the hospitals that helped us.

Misty - posted on 09/17/2009

I have a former 24 weeker who is now 10 months old. We've struggle with reflux since she was extubated in January. The doctors have all reassured us this is from her being intubated for so long and she will outgrow it. She is doing much better than when she came home in March, she used to reflux with every feed, now it's usually only a few times a week here & there. She is on a special formula called EleCare due to her sensitive belly and is now up to 6 1/2 oz every 4 hours. Her only other issue is her eyes. She was diagnosed with severe ROP in the hospital & has had 4 laser eye surgeries, 3 while she was in the hospital and 1 a few months after discharge. She now is wearing glasses and we need to patch her left eye 6 hours a day to try and correct her "lazy eye" in her left eye. We see the eye doctor on a regular basis. Other than that, which really isn't a lot if you put it into perspective, she is doing wonderful. We thank God everyday for bringing her into our lives!

Sarah - posted on 09/17/2009

both my sons were prem and breech sebastian was worn at 33weeks and had 2 dislocated hips and oliver was born at 35weeks and had 1 dislocated hip. Oliver also has a heart murmor which is more common in prems. Hes only 7 weeks old so we still not sure what were going to do about it yet.

Rebecca - posted on 09/16/2009

My son Vin was born 5 weeks early, and he has had issues with liver failure and metabolic acidosis. He is nearly 2 now, and we are still in search of a definitive answer to what is causing his MA. He's been in and out of the hospital for flu, and has only one TWO healthy trips to the doctors'.