Dealing with a High Risk Pregnancy and NICU

1:20:00 PM

One year ago today, I gave birth to two little sweet babies. They are so sweet! However, the last year and a half was very stressful. The twins were in the same amniotic sac, a condition called Mono-Mono twins for short (Monoamniotic Monochorionic Twins). This is actually very rare and the biggest fear is that they get tangled up in each other's umbilical cords, cutting off the blood flow to one or both twins. This is in addition to the usual risks for multiple births (prematurity, low birth rate, etc). As a result, I went into the hospital daily the last 6 weeks of my pregnancy to have monitoring done on the babies. Also, when we had the twins they were 8 weeks early, which was planned to try to keep them from pressing on the umbilical cords. I was very scared that the twins would have lungs that weren't developed enough and they wouldn't survive to take a breath on their own. I cried when I heard two angry babies crying out at the huge world that took them out of my womb early! I have never before and never since been so glad to hear a baby cry. We were so relieved to find out that we had made the right choice to have them early--they had knotted their cords together so much that the folks in the OR stopped counting at a dozen knots in their cords!! We weren't through the woods yet; the girls ended up staying in the hospital for another 5 and a half weeks, but now, other than their small size, you really can't tell that they went through all that.

Anyway, I thought I'd share a few things I learned along the way about how to deal with a high risk pregnancy and then a NICU stay.

How to deal with a high-risk pregnancy:

  • Educate yourself. I love my OB group, but this condition is so rare they didn't know what to do with me. Know the risks and demand that they send you to a perinatologist. Perinatologists deal exclusively with high risk pregnancies. Check out if there is a support group locally or online for people with your condition. I found a group online that really helped me out.
  • Be willing to fight for what you want. For the most part, I had great doctors who were right in line with what I felt was the best treatment to get these babies born at the right time. I dealt with a couple of nurses who thought that I was getting monitored because I was being a worrywart. I explained to them patiently the reason why the monitoring was being done. Most of them didn't even know what the condition was. With one rather stubborn nurse, I basically told her that this plan was written up by her boss (the OB) and the perinatologist (the expert), and if she had a problem, she should take it up with them.
  • Be prepared to make a joke out of it. The folks at the labor and delivery ward at my hospital knew me by name by the time we had the babies, and we were able to joke around. It was still not very fun, but I figured a bad attitude could only make it worse.
  • Ask for perks. The worse thing that can happen is that they say no. I asked for a parking pass for while I was being monitored, and they gave me one!
  • Involve your loved ones. My husband was a part of every decision. It helped to know that he was behind me when I had to make the tough ones, like having the babies early. We also took our eldest daughter with us some when I was monitored. She actually thought going to the hospital was pretty fun!
How to deal with a NICU stay:
  • Cry. Your hormones are wacky. You need to deal with the emotions. Don't worry, the nurses have seen it all.
  • Involve your family. My eldest wanted to see her sisters, and couldn't, but we still found ways to let her get involved. She still loved going to the hospital, then, too!
  • Be involved. I was there almost every single day while the twins were there. I didn't always stay all day, but I tried to be there when the doctors made their rounds, and when the twins were ready, I held them as much as possible.
  • If you are physically able, breastfeed or pump. I know that it isn't something everyone can do, but not only is it something that is really good for the babies, it is really good for you physically and emotionally. It burns some of the "baby fat"--that's good physically. It also helps to know that you are providing something for their wellbeing, even if you aren't with them all the time.
  • Be willing to take breaks. If you are not well, only go for brief times, or take a day off. We called a bunch on days like that.
  • Do what you can to take care of them. The nurses will tell you what you can do, and if this is your first child, they want to make sure you can do it.
  • Be willing to fight if you don't think something is working. Make the doctor sit down with you and explain the reason behind the care plan. If you don't like it, fight for what you think is right. And remember, as a last resort you can refuse care and take them home. Many times it feels like you are not in control, but you are ultimately responsible for the baby or babies--they cannot do something you do not want them to do, if you stop them.
  • Have people who are praying for you as a family. It helps!
  • Know that this NICU stay will end. It will, I promise. There will be other challenges, but you will make it!!

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