Is it always going to hurt? 2.15.13

I saw some identical twin boys today. I can't help but wonder what if. Will that ever go away? Probably not. Ari is doing so well. He got his preliminary results for his brain MRI and everything looks normal. His PDA was checked and is still slightly open so they are going to continue the Tylenol. He is 2 lbs 6.7 ounces and he opened his eyes for the picture today. The nurse let me hear is voice over the phone last night and boy is it beautiful. I never knew how happy I would be to hear his crys...he sounds so much better from the faint noises he was making shortly after the vent was out. I have been through so much the last 5 weeks. I have been kept from my family because my son Luca has been sick...did not see him for over a month. I'm so incredibly thankful Ari is doing so well I don't think I could handle much more than him getting better and improving everyday..thank god for that! I feel so fortunate in that way.

Movin on up...Going to CPAP today! 2.13.13

Ari is doing fantastic..so fabulous that he is going from SIPAP to CPAP today. He is officially up to FULL feeds which is 22 ml of breast milk every 3 hours. His nurse Donna, who is my absolute favorite nurse told me today that she heard a baby crying and was thinking it was another baby across the room when she realized that it was him, he finally has his voice back! He had tried to turn his head and he face planted and was pissed. She said she was so happy because if he has enough strength to do that then he has enough strength to get better. He was telling her what he needs and that is a very good sign! He is 30 weeks today and 35 days old.

Doctors still don't hear a murmer today and will do an echo tomorrow to confirm the PDA closed. Did I mention that he went up a diaper size!!! You can see in the picture below that he is in the next size up.

Austin's ashes were delivered to me yesterday. I probably would of done things differently regarding that had I been home but under the circumstances, it was the easiest. I have no idea what I will do with them. We had planned to spread them somewhere meaningful but I want to think about that for a long time. It has been the only decision thus far that I actually get to think on.

Doctors Think PDA closed!!! 2.12.13

Ari is doing amazing..just got a bunch of tests back and they are all normal and have improved miraculously. He qualifies for the Synogis shots to protect him against RSV which is wonderful and he is getting his first one today! He loves sucking on a pacifier and is doing so well with his 19 ml of breast milk every three hours. I cannot explain how utterly happy this makes me. He is 30 weeks old tomorrow (Gestational) and 34 days old. We got his brain ultrasound and everything looks good on that end. He is doing very well on the SIPAP and sleeping and resting to get stronger. First look at Ari without machine on his face...I am not quite sure but I do not think he has Luca's nose more like Papa's nose.

PDA not yet closed 2.11.13

Ari's PDA has opened a little bit from where it was at (it was previously barely open). The doctors are going to give him Tylenol to close it. I found this study online in bold below so I am hoping that it closes. He is around 2 lbs 5 oz now and he is getting 19ml of breast milk. I asked the doctor about getting the RSV Synogis shots to protect him from getting a cold also known as RSV because if he were to get it, he could die and they said that is a good idea and he would qualify for it so some stress has been lifted on that end.5 preterm infants (gestational age: 26-32 weeks) with large PDAs who failed, or had contraindications to ibuprofen therapy were given off-label oral Tylenol (15mg/kg/dose every six hours). Ductal closure occurred in all treated infants within 48 hours. No toxicity was observed.I found this information regarding the Synogis shots for RSV online as well.https://www.synagis.com/

PICC LINE OUT TODAY! 2.7.2013

He got his PICC line out today! Ari is 2 lbs, 3.27 ounces tonight. He is up to 19ml every 3 hours of breast milk. He only has a OG tube in his mouth for food and a SIPAP on his face. I held him today and it was the first time we were both very calm. 3rd time I held him and I guess 3rd time's the charm. He opened his eye slightly and looked up at me, it was amazing. I look forward to holding him daily because he is finally stable enough to do so. Now grow baby grow! Develop! We can't wait to bring him home. Ari's strength gives me strength.. Thank goodness I have a strong little boy. To all the parents who ever had a child in the hospital or Nicu, I now understand..not that I ever wanted to but I'll be changed forever after this experience.I have included a picture of his diaper just to give you perspective. The size is Pampers XS.

Growing, Look at this difference! 2.5.13

The first picture was taken 1.31.13 and the second one was taken 2.5.13. What a difference 5 days makes! The first one Ari is still on the vent, the second one he is on day 2 of the SIPAP. He was given some steroids to help his lungs and get him off the vent and thankfully they worked for him. 

The First Day I Held My Son Ari 2.4.13

It had been 25 days since his birth and the moment that I had been waiting for daily finally came. Well it lasted about 3 minutes. I was terrified and he was too! I am so stressed about his breathing in this picture but tried to look calm. I am not! It was a big day for him because he had just been switched off the Vent to the SIPAP so it was a lot of stimulation so I don't really blame him.