From one heart mom to another

When I was pregnant with Wyatt, I wished there was a way for someone to tell me what to do, how to do it, an how the hell to get through this. So, l have decided to start a list of helpful "tidbits" I find along the way, for those of you who are expecting a heart baby, and want some tips. I will update the list as I find more tips, as I usually find them in hindsight.

1. Enjoy every moment of your pre- surgery NICU stay. Those few days are the days that your baby will look as close to a normal baby as possible. Touch him, kiss him, change his diapers, spend as much time with him as your healing body will let you. Hold him if they will let you, and often. After surgery, it is a long wait until they will put your baby back into your arms.

2. Learn everything you can. Learn what medicines your baby is on, what those medicines do, what dose he is receiving, and how often he receives them. Learn what all the medical acronyms mean. Being informed makes the situation easier, you don't feel so in the dark and afraid all the time.

3. Ask questions! No question is a stupid question, and asking questions will help you understand everything that is going on. If you're uncomfortable with something, ask about it! No, you're no doctor, but you are a mom, and I think sometimes that says more than having a PhD.

4. Be an active parent. There will be so many doctors and nurses in and out of your baby's room to care for him, but he needs you too. He needs to hear your voice, feel your touch, get your kisses. And you need it. There won't be many things you're allowed to do for your baby, so don't let anyone take away the few things you do get. Change diapers (once you're allowed), reposition, feed, wipe eye crusties and lip gunk. Talk to him, tell him how good he is doing. Use this time to form that bond with your baby. We've also found that being super active parents has made the nursing staff more comfortable with letting us do things, and with giving us all of wyatts information without us having to ask for it.

5. Cry. I'd never make it through this if I didn't allow myself to cry. It is not a sign of weakness, it is a release. It is ok to cry- this is definitely one of the hardest things you'll ever go through, and bottling all that up simply can't be good for you.

6. Let people help you. Let them bring you food, help with the laundry, run your errands, whatever.

7. Take care of yourself, and call your doctor if you have any post birth complications. The last thing you want is an infected c section incision (trust me, I know this from experience).

8. Don't be in a rush. Trying to decide when your baby will reach each milestone, and when he will go home is setting yourself up for disappointment. If you must set mental deadlines, set them generously. We came into this saying "we just hope to be home by Thanksgiving." and now it is much more likely that we will be home for Halloween. It is much better to be pleasantly surprised than to have your expectations go unmet, and be disappointed. His body is in control, let him run the show. And keep in mind his body has been through hell and back, and is fighting to stay alive each and everyday. Celebrate the small victories (he pooped! They removed an IV! He ate! They weaned a med!) and wait patiently for the grand prize of going home.

9. Be open and honest with your partner. This sort of thing could absolutely kill a marriage. Talk about the things that scare you, that hurt you. Use eachother for support rather than as a punching bag. You need eachother more now than you ever have.

10. If you have other kids, love them. They too are struggling through this, and they still need to feel important and loved. I use Austyn as a mental break of sorts. It's good therapy for me to laugh and talk with my 6 year old, and to temporarily escape the consistent thoughts of medical terms, medicine, financial woes, future surgeries, etc.

11. Take time for yourself if you need it. Take a few hours and get coffee with a friend, go to lunch, grab a few beers, whatever. I honestly think that essentially hitting the "reset" button for yourself does wonders, and you can come back into the situation refreshed and ready to face it head on.

12. Be realistic. Don't fool yourself into believing that this is easy, or you've won the battle. Be happy for the steps forward your baby takes, but don't forget how serious this is. If you do, reality is going to come back and slap you in the face, hard.

13. Be vigilant and attentive. If you feel like something is wrong with your baby, you are probably right. Call the doctor. Immediately. Don't be afraid to look stupid. You can never be too safe with a heart baby.

14. Form a working relationship with your doctors. I can't tell you how many times Wyatt's doctors have commended us on being such good parents. They literally send Wyatt home earlier than they would send other kiddos home because of their faith in us. This is ONLY because we have worked hard to create that relationship with them, and show them that we are more than willing to do anything for Wyatt, and that we will call, at any time of day, if we feel like something is wrong. The nurse practitioner from our surgeons office literally texts me.

15. Be your child's #1 advocate. Know everything there is to know about his day to day care. Forwards and backwards. That way, if something gets missed, you'll catch it. This happened with Wyatt's medicine dose- they accidentally prescribed too much, and I caught it, called, spoke to the doctor directly, and figured out how much to actually give him before over-medicating him.

16. You do NOT need to dress to impress at the hospital. You are there to support your baby, not to look good. Go in sweats and a t-shirt. They are going to be very long days and nights on very uncomfortable chairs and beds. You'll want to be as comfortable as possible.