I am so glad that Angel is picking up,sorry to hear that your not feeling the best.Hopefully soon you'll be able to hold your little girl,how is she going putting on weight?Has she gotten any bigger?Anyways keep us updated Steph
So we talked with the doctor today and they are very worried about angels lungs. She has chronic lung disease. We talked about the medicine today and basically they have let us know there is a possiblity she will need steroids for her lungs because they are inflammed and its not allowing the lungs to work properly. THe bad thing is that these drugs have a 1/4 chance of causing nuerological disorders later in life. So learning dissabilities.
They switched her back to the conventional ventilator and it seems to be ok so far. She was at 45% when I left (but she needs to be down in the 20-30% range for it to be good) so we have to see how she does over the next couple of days. Me and jay won't make the decision until we see how she does on this ventilator now. Last time she was on it was before her surgery so things are different..
I'm feeling a little scared though. I was not expecting this. Doctors would not usually advise the use of these steroids unless the life of the baby was in question.
So please everyone she's getting stronger please pray for her for the next few days. I really want her to get better I dont want to use these drugs
On a good note Angels weight is now 870 grams!!! Her weight on the 30th was 745. So she's gained a good amount she's almost 2 lbs!!! And she's taking 20ml of milk now in a 24 hour period. So she's definetely getting stronger. I hope that this works in her favor now.
Anyways so far she seems to be doing well on the other ventilator and she seems to be a bit more comfortable. At this point right now I'm stuck in the middle. I'm not going to be optimistic and set myself up for dissapointment but on the other hand i'm not going to abandon all hope. I just feel like we have to take one hour and one day at a time. We will see what happens over the next couple of days. This will dictate the use of the drugs. If her Oxygen needs go down than thats the best news we could hear.
Anyways I will call in a couple hours and see if shes improved anymore and see where she sits.
I know it is very difficult but always try to be positive, each day that passes is a day she can grow a little bigger and a little stronger.
We were intially devastated when we were told charlotte had two areas of csysts due to Oxygen Starvation at birth on the brain which MAY result in learning difficulties or POSSIBLY Cerebral Palsy but she is so beautiful we know we love her whatever and will cope with whatever hand fate deals her.
We also had to live with being told for her first 6/7 weeks that she was unlikely to survive her serious brain infection but she did (given 1% chance) and the little trooper proved the Doctors wrong).
No parent of a premature baby has exactly all the same worries/fears and Samantha and I wish we could be of more help but hopefully the above will illustrate that,no matter how bad things may seem, that premmies are tougher than you think and can surprise us all, so never give up hope.
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