I find myself saying often, "I wish I would have known". It occurred to me that if I blogged about some of the things I wish I had known about this entire process it might just help someone else out there deal with a similar situation. (Please feel free to forward this to any friends you think any of this knowledge may help).
I wish I would have known...
1) that medicine is not guaranteed to stop labor. I always thought if I went in to preterm labor the doctors would be able to stop it. It never crossed my mind they would not be able to. (We knew babies were born preterm, but we also thought doctors would be able to stop labor.)
2) not to just take the word of the insurance company that tells you that you will be covered over the phone, before you are able to review the policy. (The problem was not that I got pregnant before switching insurance, it was that we had to use fertility treatment to get pregnant.) Get EVERYTHING in writing before canceling an old policy. (Funny how they can pull recordings for their benefit but not the benefit of the customer.) Wow, this would have changed our life over the past several months. In our case, we were a couple months into our new insurance before it was ever mentioned that fertility treatment excluded the babies... so if you have Blue Cross, NEVER let it go.
3) It is EXTREMELY EXPENSIVE to bury a child. I would have preferred to have Mia and a new Lexus SUV, but unfortunately I have neither.
4) If your child is born under 2 1/2 pounds they automatically qualify for SSI. It is important to call immediately so your several million dollar hospital bill will be covered. There is nothing on the SSI website about underweight babies, so just ask the social worker in the NICU for the contact information. We did not find out about SSI until December and spent months and months getting the boys' SSI retroactive for their November bill, which was about 1 million dollars.
5) When you have a major hospitalization, bills come from LOTS of separate medical practices - not just the hospital. It is really confusing, and hard to keep track of who has been paid what. It seems wrong that the people dealing with the most emotional trauma also have to deal with the really confusing money and paper trail.
6) Follow-up appointments after a major hospitalization can take a very long time. It's not over when you get out of the hospital - not by a long shot.
7) When you're going through a prolonged period of challenge, sometimes your friends really want to move on, as if life is totally back to normal. It's easy to feel left behind.
8) This whole experience changes your perspective on what concerns really are important, and what things are really just petty in comparison. But, of course, not everyone has gone through the same changed perspective.
9) An entirely new vocabulary: necrotizing enterocolitis, creatinine, hyperal, PO, SPO2, Cafcit, bagging, periventricular leukomalacia, physiatrist, penrose drain, broncho pulmonary dysplasia, ductus arteriosus, retinopathy of prematurity and many more.
10) In your cell phone there will be more contacts for doctors, clinics and medical supply companies than friends and family.
The beauty that comes from an intense experience:
1) Despite everything that seems to be so out of control… God is still perfect and He provides His peace in ways that surpass all understanding.
2) Long lasting friendships are built with people who never would have crossed your path (NICU families, staff, therapists, doctors, etc).
3) We have been immensely blessed with such wonderful children.
