Angelynn Updates

[Angel]

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

 

[Iwantone!!!]

aawww u all in my thoughts keep us update and keep ur strenghth up hunni all the best xxxxxxxxxxxxx

 

[turbo_mom]

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.

 

[luckyme225]

I'll keep your little one in my prayers!!

 

[ALI]

Hi Steph,

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.

We will keep praying for her.

 

[ablaze]

thinking of you all xxx

 

[Jenny]

I really wish I could give you a hug right now hon.

I hope everything is ok with Angel and that she doesn't need those meds, you're in my thoughts.

 

[Mango]

Have you all in my prayers hun! You're thinking positive, one day at a time. Hope her oxygen needs go down so she won't need the drugs. HUGS

 

[Tam]

I am speechless.....the 3 of you are sooo strong!!!!! I really hope little Angelynn will be improving no end very soon!! x

 

[Iwantone!!!]

sending a hug ((((((((((((hugs)))))))))))))

 

[AquaDementia]

how is she doing?

 

[turbo_mom]

Welllll so far so good. Her Oxygen requirement are set between 44-56 and they have bumped her settings down on the vent. She seems to be statting well and doesn't get too fussy when she's handled. She keeps going up on her feeds (3 ml every 2 hours I think) so she's starting to stableize! So hopefully in 2-3 days her oxygen requirements will get down into the 30's which would be awesome! I think she will be just fine. Although i'm still a little worried about the inflammation in her lungs. I have this sneaky feeling she might need a couple small doses. Just a hunch I have. But i'm not too worried about it. Not right now anyways.
But tonight the nurse on duty was getting me a little more involved with Angel. Letting me hold her feeding syringe and I got to rub her ointment on her dry legs and arms. Helps keep her moisturized. So that was really nice to feel helpful and be able to touch her! So hopefully i'll get to do more and more now that she's starting to stableize. All of these little things mean so much to me. Anyways I'm going to see her tomorrow for an hour or two we'll see if there's anything else for me to do
Time for bed!

 

[shamrockgirl4]

aww hun good to know shes still doing well xxx

 

[Jenny]

Great news hon, glad she's doing so well

 

[Ersurgeongirl]

thats a huge turn around!

 

[Samantha675]

That is fantastic news!!!!

 

[Deise]

Hey Steph, hang in there! You've got a lot to look forward to and you have been absolutely a model of strength!!

 

[turbo_mom]

So I couldn't be more thrilled about Angelynn's progress. Today when I went in the IV was out of her head and she was wearing one of the little vests that my mom made for her!! She looks like a baby now. her oxygen was down to 33%!!! They are slowly weaning down her Ventilator settings and going up on her feeds. It's awesome!! I'm so happy I was so happy to hear and see how she was doing that I cried! Here's my fave pic

https://i182.photobucket.com/albums/x316/blondefluff/DSC06206.jpg

 

[Simon'sMum]

The news you share with us today is just amazing! I can't even begin to imagine what emotional rollercoaster you are on right now but I am sooooo happy for you three. You have been so generous in keeping all people here informed.

Since my little boy was born, I felt sad that he came a mere month early. However, following up on your beautiful little girl has made me shift this regret to positive energy, hopes and prayer for you. I share your worries in my own way but concentrate on being positive for you. I want you to know that as tiny as she is and as far as you are, you and Angelynn have made me a better mom, a better person. Thank you for showing me the better side of everything so that I may be more thankful for what I do have in my life rather than dwell on sorrow.

You three are always in my thoughts. xxx

 

[AquaDementia]

aaaw, look at her little hair. adorable.