Let the Chaos Begin...

Hey there readers! I thought I'd take a minute and explain more about what I alluded to at the last Whatever Goes Wednesday link party. I'm sure you've noticed the lack of posts over the last week, and there's a very good reason why.

 

I mentioned quite some time ago (at another Whatever Goes Wednesday linky) that I was pregnant with identical twin boys due in March. It was in November that we found out that they were identical, but it was at the same time that they were diagnosed with Twin-to-Twin Transfusion Syndrome. (TTTS) Essentially, this means that one twin isn't getting his share of blood and nutrients, while the other is getting more than he needs. Since our twins shared a placenta, the veins and arteries that connect them to the placenta also connect them to each other. In most cases, the connects to each other balance out and both twins are still able to get a fairly equal share. In cases of TTTS, the veins and arteries of one twin (known as the donor) go to get the blood and nutrients, but instead of going back to the same baby, they go to the other (known as the recipient), without getting much back in return. This is very serious and life-threatening for both twins. The donor will eventually go into organ and heart failure because he doesn't have enough blood to keep his organs functioning or enough amniotic fluid. The recipient twin's heart goes into overdrive pumping all the extra blood and eventually it gets so damaged and enlarged that it shuts down.

 

There are a few, relatively new, treatment options, one of which includes an experimental surgery. This is the route we ended up going, after being seen by some specialists at the Denver Children's Hospital. During the surgery, the doctors find the problem blood vessels and then use a laser to sever the connection. This essentially fixes the transfusion problem. The twins and I had our surgery right before Thanksgiving, and then we were being followed weekly by a specialist here in Idaho Falls. We knew there were risks to the surgery, and in our case there ended up being a very big risk. In order to get to the placenta during surgery, the doctors had to take the tube and laser through our donor baby's sac, which meant they left a small hole that could ultimately turn into something bigger.

 

The membrane separating them seemed to be intact. The doctors had a hard time finding it because the boys were always so close to each other. Without this membrane, the boys would be considered to be in the same sac and would be at risk for a whole new set of bad things. However, we got a very clear picture of it at our appointment on December 23rd. This was good news because it meant that they were still in separate sacs and not at risk for the things that could happen if they shared a sac.

 

Our next weekly appointment was on December 30th. After the ultrasound, the doctor informed me that our donor twin no longer had a heart beat. I was sent immediately over to Labor and Delivery so that we could deliver both babies. Since they shared a blood supply, there was significant risk for clots or toxins being passed to the other baby. I was 29 weeks 3 days at the time of delivery. During the C-section that we found out that their cords had become tangled and one was wrapped too tightly around the other. This means that the membrane separating them either hadn't been intact or had broken sometime during the last week.

 

Anyway, as you can imagine, this has been absolutely devastating to us. Not only am I recovering from major surgery, but I have one tiny little boy in the NICU, and we had to bury our tiny little Jack on Saturday. I feel like I spend most of my day either crying or holding back tears. It's hard, but moments like this make it seem better...

 

 

This is our tiny little Emmett...and we're absolutely in love. He was born at 29 weeks weighing 2lbs 11oz and is 15" long. He's so sweet, and absolutely perfect, he just needs more time to grow. He's been breathing on his own since birth, but they have him on Vapotherm to help keep pressure in his lungs. He's using a feeding tube and they're slowly increasing his amounts. After a week, he's already up to 9ml each feeding and they're increasing by 3ml every 24 hours. The doctors are impressed with how well he's doing, since they expected a much sicker baby. The nurses all say that he's very mild and calm, but he can be feisty when he doesn't want to be disturbed. He has the sweetest, saddest little cry that just tugs at my mommy heart. It absolutely kills me to have to leave him at the hospital every day, but I know that they're taking good care of him. We're planning for him to be in the NICU until March, but we're hoping to have him home with us sooner!

 

 

 

Anyway, this is why things have been a little crazy around here. I apologize if you've emailed and I haven't gotten back to you yet. I'm going to try to catch up on emails sometime this week. I also started a little website on Caring Bridge so that we could keep our family and friends updated on Emmett's progress.  Most of our family lives far away, so this is easier than making 20 phone calls to update everyone. I've also written more in depth about our pregnancy and the complications that arose during the last 30 weeks.  I'm still working on updating some of the details from the last few days and getting more pictures posted. As you can imagine, I'm pretty much deliriously tired, so the moment I sit down to do something, I start dozing. Anyway, you can find the website here:

 

http://www.caringbridge.org/visit/emmettandjackdupree

 

(Please note that even though the website asks for donations and even make it seem like they go to help Emmett, they are really only donations for the Caring Bridge website, not for us. So please don't feel like you need to donate to them.)

 

I don't think I'll put too many updates here on the blog, but I may occasionally put some up on Facebook or Twitter. Thanks for understanding about the craziness going on over here. I promise things will get back to the way they were. I love having something "normal" like this to keep me grounded and to keep from going crazy while worrying about my boy. Any other NICU parents (past or present) out there? Any words of advice? This is all so new and overwhelming to us!