Getting a Call from the NICU 1.16.13

They say the first 3 days and first week are the most crucial when you have a child in the NICU born this early. We were on pins and needles every time the phone rang. 

We missed a call from the NICU, which caused a slight panic.  Philip and I ran (or at least moved as fast as a woman could that had been recently cut in half) down to Ari's isolette to get an update.  Being just a few steps away from the NICU has its advantages.  They informed us that there was no emergency, and they simply wanted our permission to move some feeding lines that are currently going through his belly button to a "PICC line" that will run through his leg or arm.  This is pretty normal for any preemie.  In other good news, they have moved him from an oscillating ventilator to a more standard ventilator.  Ari is even taking some breaths on his own.  This compounds the other good news that we received earlier that they ceased dopamine treatments to manage his blood pressure.

I shared a couple words of encouragement to Ari, I swore that Ari's right eye flashed open.  I immediately ran to the sink to scrub in so that I could touch his hand.  Philip and the nurse took a look at his eyes  and to them they still looked fused shut.  When I returned Philip informed me that I was probably just seeing things, but as soon as I spoke again, his right eye indeed popped open!  It was great to see him.

On top of all this good news, we just got word from the Ronald McDonald house and we have gained admittance to stay close by in long term housing.  

We have enrolled Ari in the double-blind TolSurf clinical trial.  This includes treatments of Nitric Oxide and a 50% chance of receiving 5 additional doses of Surfactant.  More information can be found at www.clinicaltrials.gov, but in short the risks are minimal with a better chance for lung development. 

Words can do little justice to the turmoil Philip and I have been through this week.  We still have a long road ahead of us.  We are so thankful for all the words of encouragement, positive thoughts for our son, coordinating activities, care for Luca, and future support to come.    

Meeting Ari for the First Time 1.12.13

Ari Cooper was born weighing at 1 lb 12 oz., 12.5 inches long with a miraculous apgar of 7. The day I met my him was such a special yet emotional day. I was not able to see him until the day after he was born due to my surgery. My father thankfully flew down to be there for Philip and I and helped us figure out a bunch of things. We were both a mess and we were not really functioning very well. My dad encouraged me to ask the nurse if I could hold his hand. They did not think he could handle much touching so I was terrified but I did it and he squeezed my finger. It was our very first bonding moment where he held mama's hand. He was very red due to high red blood cells from getting too much blood in the womb from the TTTS. He was always the recipient twin until the end when they switched and he then became the donor twin.

Emergency C-Section & Birth of Twins 1.11.13

So I read a ton of information about TTTS and everything I had read said the follow up echo and ultrasound were done the next morning after surgery to see how the babies were handling everything and to see if they had improved. The nurses said the echo would be done at 10 am, then moved to 11 am, then noon then 1pm and just kept pushing it. We finally had the echo around 3pm and I just did not feel right about it. We then had the ultrasound. Baby B, Ari had a visible bladder but was showing early signs of hydrops-which is heart failure. So early that it could of been missed on the echo. Baby A, Austin had a grade 3 brain bleed. We had no idea at the time what this meant because the hospital never sent anyone from the Neonatology unit as they had promised the day before or that day. They also promised that they would send someone in to explain after we were told this information but they never showed up.
They asked me again, "What do you want to do if one baby's heart rate drops, do you want to risk prematurity to save them both?". I had consulted with Mary about this from the TTTS foundation. She said, "Angelique, you have fought so hard to make it this far, you should try to save both babies and take them if one of their heart rate drops". I felt in my heart that this was the right thing to do, I also felt that once I knew that Ari, Baby B had early signs of Hydrops that he was not going to be okay if Austin, Baby A passed away and he was not going to improve like the doctor had initially thought the day before. I knew if we did not try to save them both, that they both wouldn't have made it. Around 5 pm, Austin's heart rate starting dropping and was not coming back up. They said Angelique remember you decided to try to save both and i was like Yes! Save them both! I was wheeled into the OR with no time for anything and put asleep for the c-section. The whole time I kept thinking I was going to have a panic attack while they were putting me to sleep. I kept thinking they would have to do a Tracheotomy and that I would wake up with a hole in my neck. I thought that at any moment I would just stop breathing due to stress. It was a terrifying horrible experience.  I woke up in excruciating pain from not having had a spinal or epidural so i felt that I had been cut in half, which in a way, I had. I think waking up after being numbed would be a better experience because you would have time before feeling the actual pain that occurred from the surgery. I was puking, extremely cold and not breathing very well. I asked Philip what had happened and he said Austin did not make it but Ari did. I was so drugged up, nothing was real. They brought Austin in for me to hold. He looked like a perfect little baby. He was 1 lb 3 oz and had a smile on his face. He was an angel and my perfect little son. I couldn't cry because I was in shock and so messed up from all the drugs I was given. I regret a few things after the surgery. I regret not having Austin baptized but there is just no instruction book on how to deal with the death of your baby. I also regret not having pictures of the bottom of his hands and feet. I have pictures of the top and I have pictures of him but the cute pics of the bottom of the hands and feet would be really nice to have. There is nothing that could of prepared me for dealing with this. People keep saying you are only given what you can handle but it just isn't true. People are given a bunch of shit they cant handle all the time. It was not meant to be that I lost my son Austin because I could not handle two babies but Austin was meant to save the life of his brother Ari and that I will always know. If Austin's heart rate had not dropped, I feel that Ari would of declined and we would of lost them both. 

Fetal Laser Ablation Surgery Day 1.10.13

We had fetal laser ablation surgery the next day at around 5pm on 1.10.13. The surgery went well. There are so many things that could of happened that didn't. Breaking the bag of waters, extra blood from the lasering which could of made it so the doctors would have to stop the surgery due to not being able to see the connections that needed to be lasered. It has been said that no one should ever operate on a pregnant woman so the risks were high. We were told that Austin who had marginal cord insertion had high risks of not making it even if the surgery was successful because of where his cord was placed. Unfortunately, the cord insertions are random and we don't get to pick the perfect place. Baby B, Ari had a nice normal cord insertion. They lasered 6 connections overall and felt that they had got all of them. The odds of both babies surviving were 60% but they felt that it was lower in our case because of Austin's cord insertion. 

The day of the surgery, I was asked what I wanted to do if one of the baby's heart rate were to drop, would I do emergency c-section to save one when the other one might be okay staying in if the surgery was successful, would i want to try to leave one baby in there so he might have the chance to improve and possibly be delivered at a later date and not face all the issues with prematurity?  What a horrible decision to have to be faced with. How are you suppose to decide this? It pains me just thinking about it.  We were told because of how early the babies were that their survival rate if we decided to get them out would be in the teens because they were affected by  TTTS. Since then I have done research and the survival rate seems higher, it really depends on the child. At this point, we had decided that if one baby's heart rate drops, we would give the chance to the other baby and we would only deliver if both babies were at risk due to the risk of prematurity being that I was only 25+1 day and at this time I only had one round of steroid shots to get their lungs going. I needed another shot and 24 hours before the babies would have the full effect of the steroids.

More info on the surgery here. 
http://www.youtube.com/watch?v=6rdy2FmjsmM

Our Worst Nightmare 1.9.13

I went in for my appointment after 9 days without being seen at the doctor. My last appointment was on a Monday (12.31.12) and I was coming in on a Wednesday (1.9.13). Coming from being seen somewhere between 2 and 4 times a week, this was my longest time between appointments that I had since I was diagnosed. It was a very confusing appointment as the Baby A, Austin who had always had the lower fluid now had 9.8 and Baby B, Ari who always had tons of fluid or higher fluid was 2.7 with no visible bladder. We were officially in stage 2 of TTTS which made surgery an option. I did not have good feelings about surgery as it was not the end all be all. It had helped some people with TTTS but a lot of people also had lost one baby if not two. We got on an airplane to San Francisco within 2 hours after my appointment to get emergency laser ablation surgery to try to help the twins. We checked into the hospital when we arrived and spent the night and appointments to review the twins status started at 7am with an echo then ultrasound and then meetings with the surgeons.