The Story of Our Micro Preemie, Identical Twin, Ari, Born 25+2

Ari is going great! 4 month Developmental Follow up Appointment 9.4.13

2013-09-04T10:20:00.000-07:00

He had his 4 month development follow up today and they said he is right on track. Social Skills A+++++! Motor skills right where they should be! He wants to do so much more than he can and that is a good sign. His brain is just a little ahead of what is body can do. I sware his brain says RUN AROUND THE BLOCK but his body says, uh no.

He had his cardiologist appt last week and everything is normal. No issues with his heart. His ROP on his eyes has resolved and he is such a smart, smiley beautiful baby boy.

Right on Time 5.27.13

2013-05-27T22:33:00.001-07:00

Ari was 41 weeks on May 1st so that is his new birthdate-- at least for the time being. So he is almost a month old and is tracking with his eyes. It is nice having a preemie as the 2nd child...it gives me a sense of relief because I know what a normal full term baby does and I can see where Ari is at and he feels very much like a normal full term baby. Of course he is not and there are precautions being taken but I mean more developmentally. He is doing well and it feels good. He is a great breast feeder..has accomplished eating all day via breast and only 2 bottles to give him a tad extra calories and vitamins. He is gaining weight appropriately and is in newborn size clothing..some preemie pants still but mostly fitting into newborn clothes quite nicely. I have been a bit sad about Austin lately..wishing there was something more I could of done or just wish he had his little brother..I edited this photo to see what they would look like. I think it is a very special photo.

Ari out of preemie clothes 5.20.13

2013-05-20T10:29:00.001-07:00

I put on a newborn size outfit and it fit so nicely. So happy. His eyes have improved significantly. It got a little scary there for a while.

Stage 3 ROP resolved 4.16.13

2013-04-16T10:11:00.001-07:00

Eye doctor called today and said the stage 3 ROP has resolved on its own. No intervention needed and next eye appt in two weeks. Vessels look normal. So happy about this. Our little guy is getting quite the personality. He is rooting for milk just like a normal full term baby does and a very hungry boy. He is looking all around and a happy baby. Happy baby = happy life

Huge Improvement 4.14.13

2013-04-14T21:20:00.001-07:00

Ari was a new baby today. The surgery has helped him improve dramatically. He breast fed at the 2pm and 5pm feeding and took 64ml and then 60ml respectively. His normal feeding is 46 ml so he was quite the hungry boy. He did not desat one time, didn't turn blue, did not choke, it was such a low stress, beautiful moment. He is 6lbs, 8oz today. He moved to an open crib which is a huge milestone. Here he is looking up at his Grandpa Jim. His eyes are so much less puffy and he is looking all around. What a miracle!

Hernias Repaired 4.12.13

2013-04-12T21:07:00.000-07:00

Ari got his umbilical hernia and bilateral inguinal hernia repaired today. I had numerous panic attacks all day, it was absolutely horrible going through this first surgery as I felt like I was going to throw up all day with worry. He looked really good before the surgery, very strong and healthy so that is the only reason why we went through with it. The surgery was a big success. He extubated himself a few hours after the surgery and went down to room air 21% and 2 liters that day. Thank goodness this is over and we can focus on getting Ari home!

Ari is 6lbs 2oz 4.10.13

2013-04-10T00:18:00.001-07:00

Growing, getting bigger.. Taking most of his feeds by bottle and breast. Has some nasal congestion and they suctioned him and there was some blood in his nose which is scary. The doctors said they would be willing to move up his hernia repairs to this Friday. He currently has a large hernia in his scrotum and a small one in his belly button. He has to go back on a vent for surgery which terrifies me. He is 38 weeks today and I am hopeful that we may possibly be able to get his o2 requirement down once he is more comfortable after the surgery. He is currently around 28% and on 1 liter. He has to be on .5 to go home on o2. I want to be with my baby so badly. It is the worst feeling being without him. I can't explain how amazing he is..he talks to me with his eyes and I can tell that he will be very smart. I wish others could be around to see what I see..it is an incredible feeling. He is such a natural breast feeder. I feel so lucky in that way. I pumped this morning and got 7 ounces so I am thankful that my supply is going up. I discovered that RCH has a gym so I worked out for the first time and it felt great. My stomach gets a little soar at times but I feel that after 12 weeks since the c-section now is a good time to start my exercise routine. Hoping that it will help with my postpartum.. Definitely feeling more depressed than sad which is what I was feeling at the beginning when all this happened.

Boring is Good 4.2.13

2013-04-02T21:13:00.001-07:00

Boring is good. We have made so much progress since Ari arrived at Randall Children's hospital on March 6th.

1. Ari was able to get off lasiks (he was on this everyday and there are not so good side effects) see list here http://www.drugs.com/lasix.html
2. Ari got off caffeine
3. Ari is breastfeeding with and without the nipple shield (has taken full feeds by breast)
4. Ari is bottlefeeding (has taken full feeds by bottle)
5. He no longer has the top to his isolette on
6. He is regulating his own temperature
7. He is 5 lbs 7 oz.
8. He is following a nice curve for height, head and weight (GREAT PROGRESS)
9. He has great muscle tone and eye contact
10. Some slight stage 2 and mild stage 3 ROP seems to be getting a little better
11. He has weaned down from 3 liters to .6 liters and 28% oxygen
12. I heard his cry for the very first time, it was loud and sounded great
13. Cues for food, very good eater

The main thing that is bothering him are his hernias, he seems to be in a lot of pain so I am anxious to get that surgery as I think he will be a totally different baby once he is healed and doesn't have the pain that it causes.

Autopsy results for Austin 3.29.13

2013-03-29T20:41:00.000-07:00

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

2013-03-11T22:03:00.001-07:00

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

2013-03-08T20:56:00.000-08:00

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

2013-03-06T16:27:00.001-08:00

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

2013-03-04T17:10:00.001-08:00

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

2013-03-02T21:31:00.001-08:00

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.

Possible Transfer to Nicu in Portland?? 2.28.13

2013-02-28T19:10:00.000-08:00

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

2013-02-26T21:39:00.002-08:00

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

2013-02-25T21:31:00.000-08:00

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

2013-02-23T21:52:00.000-08:00

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

2013-02-22T21:29:00.000-08:00

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

2013-02-19T23:31:00.001-08:00

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

2013-02-17T15:20:00.001-08:00

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

2013-02-15T08:35:00.001-08:00

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

2013-02-13T12:56:00.001-08:00

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

2013-02-12T16:51:00.001-08:00

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

2013-02-11T13:46:00.002-08:00

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/