Hello, my name is Eleana. I am married to my wonderful and hard-working husband, Spud. We have a 14-year-old son together. Spud and I are currently growing our family. I have between 2-4 weeks left, and there have been and will continue to be some struggles and complications for a little bit.

Let’s start off with my husband and I are both 38. We have a big age gap between my first and the new baby coming. We did try to conceive over 10 years ago for a few years. I had been seen by doctors to help through the process. We did minor things that wouldn’t be costly. It seemed to be a stressful process. So it got to the point we were like, you know what, if God gives us a baby, it will be when He believes it’s the right time. Well, He believed 14 years later is the right time.

I found out I was 8 weeks pregnant back in June. What brought me in was stomach pain and blood in my stool. When I went for my first check-up, everything looked good. I took the NIPT test. It came back negative and low risk. I had really bad morning sickness and migraines this pregnancy. I would work to the best of my abilities that I could.

When I got my anatomy test done at 20 weeks, it was a long ultrasound. They couldn’t even get everything they needed because baby Ace was moving so much. So they eventually said they will do another in 4 weeks. I also found out that I have a low-lying placenta, and it will be monitored. Baby was fine up until my 28 weeks (Oct 24th). My placenta had moved up, but I found out that baby Ace has a "double bubble," which is an infant with duodenal atresia, a congenital condition where the first part of the small intestine (duodenum) is blocked or narrowed.

What it means is:

Blockage: The passage between the stomach and the intestine is blocked, so food and fluid can't pass through normally.

Fluid buildup: This causes fluid to build up in the stomach and the beginning of the duodenum, creating the two-bubble appearance on an ultrasound.

A baby with this condition cannot swallow and absorb amniotic fluid properly, which can lead to an excess amount of fluid around the fetus, known as polyhydramnios.

I was also diagnosed with polyhydramnios, which is why I felt like my stomach was so big for 28 weeks, why I had a hard time breathing and walking. My stomach felt so heavy and full.

My OBGYN said she is going to set us up with a high-risk doctor who specializes in this stuff. We met with him on November 4. Did another ultrasound, and he explained more details of the situation and what to expect, which is when the baby is born, he will be taken to Children’s Hospital to have his surgery within the first 48 hours. He will stay in the NICU for the healing process. They have to drain him with the blockage inside, and then afterwards, they can prep him for surgery. The healing process depends on how well he uses the bathroom and takes food.

Then there was my amniotic fluid. He said he would recommend draining some as too much fluid can cause more complications.

We put the request for approval. It got approved, so at my next appointment, I had 2550ml removed, which weighs about 5 pounds. I felt a big relief from that, but it was just a band-aid. We wanted the baby to stay as long as he can to build his lungs and be as strong as possible for surgery. My high-risk doctor said he will be sending in a sample to check for Down syndrome. Even though the NIPT test came back negative and low, it’s very rare that it’s wrong.

A few days later, I get a call, and it’s him telling me that the result came back and baby Ace is confirmed to have Trisomy 21. He isn’t sure what has happened. He is in shock; this is his first time having to experience this. He will reach out to who did it, and they need to do an audit.

When I found out this news, I just broke down crying. This pregnancy wasn’t easy. Everything that I was dealing with, the doctors were telling me there were low chances of things happening and it was rare. But it’s like every appointment after 20 weeks was stressful.

I had literally just learned about the double bubble. My baby will need surgery. As soon as he is delivered, I see him for an hour or 2, and he is taken to another hospital. I had to manage myself, keep things less stressful so I don’t go into preterm labor. And it wasn’t easy. People didn’t help make it easy either. I had to stop working. I don’t get any benefits through my job, so I haven’t been paid. We have been using our savings. That will only last so long. My husband works for USPS. He has been there for a little over a year, so he is at the bottom of the totem pole. His hours and days change daily. We found out they don’t offer short-term disability. So when we do have the baby, it will be unpaid.

With all of the pressure and now the 2 times a week monitoring, finding out what baby Ace is diagnosed with leads us to some life-changing events. I won’t be up and running back to work. Spud is going to need to be there for the first month at least to learn and navigate through this all.

With these funds, it will allow us to catch up and also stay afloat while settling into the new changes until Spud goes back to work. I had always been the one to help and share. It took a lot for me to want to put myself out there. But I feel like I need to come out of my shell and learn that asking for help, there is nothing wrong with it. When baby Ace comes, it’s going to push me even more to step out of the box, and there is another world we will be learning. And we are here for it. Baby Ace will be loved and cared for no matter what. I just pray the world is in a better place by the time he gets older.