Possible Transfer to Nicu in Portland?? 2.28.13

I got a price! I got a price! We could go back to Portland for $25,757. HA! The number has been given to my insurance to see what they say. We will see. We were told to call our insurance to advocate for ourselves and what it means for us to go back home with Ari. If insurance denies, there is a possible option that Emmanuel Hospital could cover the cost of transfer. Not really sure but we are looking into any and all options. It is just so difficult being away from my family. I have Luca this week and Philip's mom came down to help me with him since I am pumping every 2 hours and needing to go to the hospital every day. We went to the hospital yesterday and were on our way up to the 15th floor and Luca projectile vomited all over himself, my shoes and the elevator. I went into a panic and immediately hit floor 1 as to not even stop at the 15th floor. As you may know, it is imperative that Ari is around nobody that is sick so we cannot go anywhere near the hospital. I am not able to stay at the Ronald McDonald house if I am sick or anyone else is sick so we had to check into a hotel.

Ari is up to 26 ml's of BM. He is doing great. Had his second eye exam this week, had one last week and same results, that is eyes are still too immature to know anything. Tomorrow they are putting him back on the nasal Cannula, YES!. Ari's nurse, Donna, my favorite nurse, says she tells Ari every time she has him that she loves him and that he is a genius and beautiful and he is like "yeah yeah Don, I know" HA! He has such a personality and I love it!

Attached is a picture of my beautiful Luca. We are both very happy to be reunited!

Philip Holding Ari For First Time 2.26.13

Good news in that Philip finally got to hold Ari for the first time today. Attached is a picture before  they put the warm blankets on Ari. Once they put the blankets on, you can't see our little ARI so I snapped a photo of them before and what a perfect picture it turned out to be. I have also included some super cute photos of Ari with no mask on. They took it off for a few minutes while adjusting his mask. I hate to see him have that CPAP mask, it bruises his face and they have it on so tight. He is up to 24 ml's every 3 hours of fortified breast milk and today is 2 lbs 13.9 oz.

Ari Back On CPAP 2.25.13

The doctors tried to wean Ari down from High Flow Nasal Cannula on Thursday 2.21.13 of last week to a regular Nasal Cannula and he did not handle it well. He was doing really well on the Nasal Cannula so I guess the doctors thought they would try. He has now went back to the CPAP because he tired out and his lungs needed extra support. I am told that these little micro preemies like Ari sometimes need a push to get things going on their own and it is normal for them to go back and forth sometimes but hearing the news made me want to implode. The doctors reassured me that they won't know if he can handle the next step unless they try but it is hard seeing him take a step back but the good news is that he was on the cannula for a week so I am hoping he will be back to that in no time.

I have attached the view that our little Ari has from his bedside. It is pretty incredible. The one good thing about being far from home is the sunshine here. It makes healing physically and mentally a LOT easier.

Finally in My Arms 2.23.13

Today was the first time that I held Ari in my arms, the other times were skin to skin kangeroo care but this time we tried non nutrative breast feeding. So when a baby gets on the Nasal Cannula that is when you can start non nutritive breast feeding. This is where you pump before you hold your baby and then put your baby to your breast to practice your baby suckling at your breast. We tried it and I immediately got a let down and Ari got some drops of milk on his face and in his mouth. It takes babies until they are between 33 and 35 weeks before they have the suck, swallow reflex coordinated so we are not there yet but I am very reassured at his ability to suck on his pacifier that we are going to be able to make breastfeeding happen for us. I am determined to make this happen.

MRI Study for Ari 2.22.13

We enrolled Ari in a neurological study that has been going on for about 20 years. It follows babies that were born early and tracks their progression up to 8 years old. Both Philip and I feel in our heart that he is going to be fine but we are of course dedicated to whatever Ari made need in his future to give him the best possible start. Words cannot describe the love I have for him. I would do anything to make him the best possible Ari that he can be. The neurologists said that we should very reassured by the initial MRI. Brain Structure Normal, Brain is growing, pupils reacting to light, he is doing the right things for his age--following the same curve that they expect, no damage seen in motor fibers. They also said that the study included a "cuteness" test as part of the neurologist assessment and he score highly on that. He will get another MRI when he goes home.

Ari moved to Nasal Cannula 2.19.13

He is doing great.. Off the cpap and onto the nasal cannula. This makes me very happy because the cpap looked like it was hurting his face and so I am sure it makes him happy too! Happy boy = healing! His PDA is insignificant per the echo results and he will have his first eye exam tomorrow at 31 weeks. He is handling his full feeds of 22 ml every 3 hours and he is 2 lbs 10 oz today. Ari told me he is getting better and wants to get back to Portland with his Papa and Luca. For only 31 weeks old, he has amazing personality as you can see in the attached photo. We are going to all have a lot of fun together in our future.

Pda still open 2.17.13

So the echo confirmed that the PDA is still slightly open so they are continuing with the Tylenol and will do another echo next week to see if that worked. Ari is 2 lb 9.3 oz today. He has a big week next week. He will get his first eye exam to see how his eyes are doing.

I'm hoping he will be able to move to nose canula next week so we can start with non nutrative breast feeding where I pump first and he just gets comfortable with the breast. They will not give him a bottle until he has breast feeding down and I am determined to make that happen for us.

He is doing well, very stable, labs look great. I am so hopeful for him and our family. I can't wait until we can come home. It has been so hard being away from my husband. He is my best friend and we are together all the time so its painful being away from him and my son Luca.

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.

Philip's First Trip Back to SF Since Birth 2.3.13

It has been extremely difficult being away from my husband and my son Luca not to mention my friends and family. Luca had been sick so Philip had not been able to come down as planned and it had been two weeks since I had last seen my husband. I felt that I was shipped off to rehab or something, left to grieve our situation alone.