Autopsy results for Austin 3.29.13

I delivered 25+2 due to one of my boys heart rate dropping a day after emergency fetoscopic laser ablation surgery at UCSF in San Fran. I was told right before we delivered that Baby A had a grade 3 brain bleed and Baby B had early early heart failure. We decided to try to save them both if one babies hear rate started dropping. It was a wise decision. Mary Slaman-Forsythe helped me decide, THANK GOD FOR HER! Baby A, Austin did not make it, but Baby B, Ari did. I just received the autopsy for Austin, Baby A who did not make it. We had TTTS for 9 week weeks, diagnosed 16+2, At 25 weeks, the twins had reversed roles, the donor had become the recipient and vice versa. The autopsy revealed some interesting facts
1. Austin had a grade 2 brain bleed, most babies don't die from just a brain bleed
2. Austin only had 20% of the placenta and a Velamentous cord insertion 
http://en.wikipedia.org/wiki/Velamentous_cord_insertion
3. Austin most likely passed away from severe anemia and the side effects of not being able to handle the reversed TTTS
Please note, they reversed roles BEFORE laser ablation. I read that this happens in 5 out of 100 cases.
Baby B, Ari made it and he is 36+6 today and doing extremely well. The only surgery that he will have is a repair for a hernia in his scrotum and belly button. 
Austin was perfectly formed, perfect in every way  The pathologist called him a well nourished premature boy. He weighed 1.344 pounds and was 31% smaller than his brother Ari who was 1.79 lbs. I honestly did everything I could do to save both my babies and I am so sad we could not save Austin in time but I do feel that Ari would not have made it if he would of stayed in utero because he was always working hard as the recipient but when the TTTS reversed and he became the donor, his little body had just worked too hard and he could not handle it anymore so even though 25+2 is a hard hard road, in my heart it was the only road to get him here with us today. 

Back from SF 3.11.13

So I am finally home from San Francisco after 4 grueling days of being without both Luca and Ari. Long story short I had practically moved in down there and needed Philip to bring 4 suitcases to get my stuff, Ari's and Luca's stuff and all my breast milk home. It has been an emotional day. First with seeing Luca and then with seeing Ari. Ari is 3 lbs 11 oz and looks so healthy. He immediately opened his eyes when I arrived and grabbed my hands in a vice grip as a so happy to see you mama and don't you dare leave me. I held him for 1.5 hours and I was actually able to touch his hair and him without him getting overstimulated. It was wonderful. I cried when I had to put him back to pump. It is just not normal to have to leave without your baby. I want to take my son home even more now that I am home. It is just not normal to have a baby and be without your baby. It is heartache for me and frankly I hope it doesn't last much longer. I hope for the days to fly by so I can have him home with me but thank goodness he is so close now and I can be with him and Philip and Luca.

Ari's new home 3.8.13

Ari's transfer to Emanuel went well. He is getting his second shot for RSV. He got his OG tube removed and they put in a NG so he has his mouth free. Earlier this week on 3.4.13, we tried non nutritive breastfeeding and he latched right on the very first time, it just keeps getting better every time we try. The nurse said it was the best she had ever seen in a child of his age. He was getting lasiks every day at UCSF and his doctors here decided to take him off and see how he does. His Oxygen is currently around 25% and he is on 3 liters. He has his own room at Emanuel which is very nice. I feel that this will really help him develop as there is not a bunch of noise and people and commotion. It also helps me bond with him because we are not sharing a room with 5 other babies and 5 other families.

Ari transferred to Randall Childrens NICU 3.6.13

I had come into the Nicu yesterday at UCSF and my phone rang. It was the doctor in the Nicu. Funny enough I was standing right in front of her when she called. She said "Angelique?"and I said "yes", and I said I am standing right in front of you. She said "what"? I said, "I am standing right here", she looked up to see me on my phone and laughed. She said I have good news for you. Good news, I love good news..I couldn't even begin to imagine what she was about to say.  "Emanuel decided to pay for the cost of the transport for Ari in full". I was in shock but immediately cried with joy that we were finally going home. My insurance had denied the cost of the transfer so I was not counting on this. I have included some very heartwarming photos of my last two days at UCSF. It was bittersweet to leave all these wonderful nicu nurses to not know what is ahead. I felt that Ari was in good hands and just hope that he will be getting the best care at Emanuel as well. Ari was transferred after spending 54 days at UCSF. A team of 6 showed up to take Ari to Portland. Two respitory therapists and 2 nurses were included. It felt like a scene from a movie..they showed up in slick uniforms and it was intense. I have also included what the transport isolette looked like.

Ari is 3 lbs 3.4.13

Ari is doing very well on the nasal cannula. He has finally hit the 3 lb mark and he looks incredible. He looks more and more like Luca every time I see him. His hair is turning blonde from the dark brown it was when he was born and he is just so precious. He is up to 27 ml every 3 hours and he hates dirty diapers. He has wide feet and when he is mad he let's you know it. We did non nutritive breast feeding for the second time and he latched right on. The nurse said that was the best latch she had ever seen at his age so I have no worries about his ability to breast feed. He just needs to get the suck and swallow and breathe reflex which I guess preemies get around 35 weeks. He is almost 33 weeks old. He was trying to suck on my hair and was holding on to my hair and I loved it. I wanted nothing more than to take him home. It felt like the most natural thing in the world.

Ari Back on Nasal Cannula 3.2.13

Ari is back on the nasal cannula today! I am very happy. He is on 21% oxygen which is room air. Room air! Amazing. He is getting 26 ml's every 3 hours of 1/2 breast milk and half 27 kCal formula because the doctors are wanting him to gain weight faster than he is gaining. Weight gain is good for brain development and development in general. Luca is still down in San Fran with me and is unfortunately sick so we have not been able to go in to see Ari for a few days but Philip came down and he went directly to see and hold Ari from the airport and is staying at the Ronald McDonald House because we can't since Luca is sick.

The rule is if you are sick you cannot stay at the RM house because there are a lot of children and people going to see their children so the minute anyone doesn't feel well, they are suppose to leave to not expose everyone at the house. We have followed this rule stringently as it is important to us that we do not get anyone sick and we would hope others do the same as our child's life is on the line.

The doctors switched Ari to the 27 kCal fortified feeds for weight gain but I have to tell you it terrifies me. There is always a worry about NEC in preemies and he has been doing so well with his feeds for many weeks now that I don't want anything to happen to him. The doctor's said they will watch him very very close and his belly is a bit distended but soft and no residual so nothing to worry about. Philip held Ari for the second time today but the first time on the nasal cannula. He did very well with Papa. I miss him so much when I cannot see Ari. It is a constant tug a war between each child. What is good for Luca (for me to see him) is not good for Ari (as Luca is at the age where he is always sick). It is a juggle that I wish I did not have to do.