Where to begin… My husband and I tried for over a year to get pregnant before seeing a fertility specialist. We had been pregnant once but I had a miscarriage at 8 weeks. Turns out I have PCOS (Polycystic Ovarian Syndrome) and don’t ovulate normally. However, after one round of ovulation therapy (and a warning that we might conceive triplets) I did in fact conceive. At 5 weeks we learned it was twins. The first day we laughed. The next day I cried, all day. I was so scared. One baby is hard enough work on its own. After a few days when it sank in a little we were so excited.

The pregnancy started out well. At our gender ultrasound we didn’t learn the genders but we did learn that Baby A had a cleft lip & probably palate. We were devastated.  At the time it felt like the worst news in the world. Like our world with perfect healthy babies was over. Later we learned Baby A was a girl, I felt so bad for her. I felt like we wouldn’t be able to take newborn pictures of her or want people to see her. Feelings that I feel very guilty about now. After meeting with a geneticist my husband and I decided to get an amniocentesis to find out if either of our twins suffered from any larger chromosomal problems. After the traumatic procedure and 2 very long weeks we learned that our son & daughter were chromosomally  perfect. Over time we met with what would be her craniofacial team and saw how they would help fix her clefts. It was so reassuring and our fears were greatly relieved.  I thought that was the end of our worries.

Unfortunately our baby girls story gets worse. At a later ultrasound we got hit with another huge bombshell – a defect in our baby girl’s brain. They found that our baby had Dandy-Walker syndrome, a congenital birth defect affecting the cerebellum & 4th ventricle. They said it looked mild but Dandy-Walker syndrome can cause physical & intellectual impairment to severe mental retardation. There is no way to see how it will express itself. Again we were devastated. Her brain! No parent ever dreams of having a child with special needs. But every time i worried about her she would give me a kick. Like she was reassuring me she would be fine. Although I was heartbroken I had so much faith in her.

Before pregnancy I always said I was pro-choice and I would never bring a special needs child into the world. But she was already my baby girl. I could feel her moving inside of me. I was shocked when doctors gave us the option for a “reduction” to abort just her. We didn’t consider it for a minute.

My pregnancy continued on. We did research and came to terms with another of her conditions. I had Braxton-Hicks contractions everyday starting in my 2nd trimester. After being evaluated by Labor & Deliver they determined I just had an irritable uterus and lots of contractions were just my thing. Unless they got painful I was OK.

At 31 weeks, 3 weeks into my maternity leave, I started having contractions that felt like period cramps. I tracked them and they became more frequent. I called in and they told me I should go into L&D for observation. At 6pm on 9/3/2014 I was chitchatting with a nurse as she tried to get the heart rate monitors on my belly. She was having a little trouble finding baby A so she went out to get an ultrasound machine. I wasn’t concerned and told my husband to use this time to go move the car and grab my bag in case they wanted to observe me over night. A male nurse came back in and after locating baby A got on his phone and called someone “STAT”. I asked what was wrong but he wouldn’t tell me. A few people entered my room and checked baby A again and called more people in. They told me baby girls heart rate was under 80 and she would have to come out via emergency c section. I was so scared. I tried calling my husband to get him back in the room. They grabbed me and started giving me an IV and telling me about general anesthesia. Right as my husband returned they were rushing me out of the room and down to the OR. Once I was on the table I could feel fast moving hands all over me but couldn’t see anything due to the infamous blue curtain. I was so scared they were going to cut me  open before I was under I kept yelling “I’M STILL AWAKE! I’M STILL AWAKE!”

How my husband watched his children being born

Baby Girl being rushed to the NICU

Baby Boy being rushed to the NICU

My babies were born at 6:29pm. Baby girl was 3 pounds 6.3 oz. Baby boy was 4 pounds 5 oz.

I woke up in so much pain. My husband had escorted our babies to the NICU where I wouldn’t see them till the next day.

The next day I was determined to get into a wheelchair so I could see my babies. When I first saw my daughter I was shocked by how big her cleft was. It was completely up and through her nose. That was the least of our worries. Both our babies’ lungs were underdeveloped. It killed me to watch my son fight to breathe. I cried nonstop the first few days every time I saw him. Baby girl had the same condition but didn’t seem to be struggling as much. A few days later when they sent me home they told us to expect them to remain in the NICU for 4-6 weeks. Leaving them was the hardest thing.

Seeing my children for the first time the next day in a Percocet haze.

My daughter – Day 2. Complete cleft on right side.

My son – Day 2. On CPap

During the first week we learned our baby girl ALSO has a hole in her heart. It was presented to us as a very large hole that could require open-heart surgery. I was so scared she was going to die. I ran out of the NICU and collapsed in a chair in the hallway, repeating to my husband “I can’t lose her, I can’t lose her…” Later we met with a cardiologist who explained that although it’s one of the largest VSDs he’s ever seen they usually close on their own in a few years. That he would not operate on it. Due to the hole in her heart her lungs have excess fluid in them making her breathing fast & hard. In order to help with the fluid in her lungs they had to give her diuretics which caused her to lose even more weight. Seeing her so tiny compared to her brother is so difficult.

Now almost 3 weeks later our son is doing great. He is off air and up to 5 pounds. We are working on breast & bottle feeding. Once he learns how to eat he can come home. We all hope that is in the next 2 weeks.

Our daughter has finally started to gain some weight back but she is still a pound and a half smaller than her brother. She struggles to breathe and they change her breathing machines often. It still kills me to see her so skeletal. Holding her is scary due to her small size. Plus she has terrible reflux so her feeding tube had to be pushed down into her intestine. Most days feel like 1 step forward 2 steps back.

As for our daughter’s Dandy-Walker syndrome, her ventricles do not seem to be swelling at this time but the doctors still think she will need a lot of extra help. Its so heartbreaking to hear. I hate having to “wait and see.” I am so overwhelmed with fear of having a child with special needs, let alone having another baby to care for at the same time. I cry most of the days. My husband is so amazing and supportive but I feel like I am drowning in despair.  I have an appointment with a psychiatrist to discuss possible PPD.

I knew our twins would most likely be in the NICU but I never realized how hard it would be. My husband stayed home with me for 2 weeks to help me recover but now is back to work till they come home. My routine is going to 9am rounds by myself. Listening to the doctors talk to each other makes everything sound so scary and I don’t understand most of it. I try breastfeeding my son and then go home and pump every 2 hours. At 4:30pm I meet my husband over at the NICU again. Its so draining. Pumping all the time and going back and forth to the NICU takes up all our time. Our babies aren’t home and I still don’t get time to sleep. I am hoping its easier once they come home.

But I am also terrified of them coming home. I’ve seen them struggle to live. I’ve seen how fragile they can be. I’ve become to rely on their monitors to show me they are OK. I don’t trust myself with my own kids. It might be PPD but I am terrified of being a mom. I’m scared I won’t survive it. I feel like every thing and every thought is overwhelming. I’m terrified of having a child with special needs. But I also don’t want to set up a self-fulfilling prophesy by treating her like she has special needs.

Right now I pray my daughter keeps gaining weight as that will hopefully help many of her health issues.

I just wish I could fast forward in time.

Phew, that was painful to revisit.

In posts to follow I will work on getting you all up to date with all the fun stuff thats happened since their exciting arrival.

Till then,

PS. Ironically I don’t think I swore at all in this post. I’ll work on that.