January is EA TEF Awareness Month. Guest blogger Matt Allen is here to kick things off the awareness-raising. Just a few short weeks after the birth of his adorable son, Matt has gained new wisdom to pass along to dads with an EA TEF baby in neonatal intensive care units (NICU).

5 Tips for New Dads with an EA TEF Baby in the NICU

My son is only 5 weeks old at the time of this writing, but there are some things that I’ve learned that I think will be helpful to other new dads of an EA TEF baby in the NICU. My wife and I live in San Francisco, and our son is our first. He had the most common type of EA/TEF, Type C, and the surgery went as planned.

He had a leak following the initial surgery that took 2 weeks to heal. At the time of this writing, we’re still waiting for his first dilation. I know every case is different, but I figure some general tips for dads with an EA TEF baby would be helpful based on what I’ve learned:

Tip #1: Be At the Hospital As Much as Possible

This may seem obvious, but for guys it’s not always that easy. I’m lucky to work at a company that gives 5 weeks paid time off for bonding leave for dads, but I’m sure there are many dads that don’t have that luxury. Often, you’re choosing to get sleep or exercise versus spending an extra hour at the hospital.

Spending as much time as possible the hospital lets you be a constant barometer of how your baby is doing and to be part of providing care for your EA TEF baby. Nurses don’t stand by your baby’s isolette, and they change shifts often. Parents are the only constant.  Parents see if their child is changing color or needs suctioning. Studies show it’s good for babies to be held and to hear their parents’ voices.

Tip #2: Be Assertive and Communicate Often With the Doctors and Nurses

Matt holding his son at the NICU on Christmas Day.

Dads with an EA TEF baby can be advocates for their children. Doctors and nurses are busy. If parents aren’t assertive, they may not get necessary updates, or the special attention their baby deserves. Last week, we discovered a big communication breakdown between the surgical and medical team because each thought they were communicating with us when in fact neither was. This was all going on while they were in the midst of debating about when to do the first dilation. To us, it seemed like they just decided to go on radio silence. No news is not always good news.

Remember that in the NICU, the squeaky wheel gets the grease. So be present at “family rounds” if they have them. Ask for regular updates. Write down your questions. Know who is in charge. Ask them about their concerns. Tell the medical team how you want to be involved.

Tip #3: Wash Your Wife’s Pump Parts and Do Other Small Things

Dads, remember that your wife is exhausted from labor. She’s pumping every 2-3 hours. She’s emotionally and physically exhausted with her baby in the NICU. As a husband, step up and do the small things that you can do for her.

• Wash the breast pump parts for her. This is easy to do, but can get tiring for your wife. You can also help label and store milk. Your freezer will fill up quickly so you may need to go buy another freezer.
• Make tea for her. We have 20 boxes of Mother’s Milk tea, which has to be sipped frequently to get any benefit.
• Handle the food. Dads can coordinate meal delivery, order Chipotle, or going to the grocery store to pick up food – all relatively easy things to take over.
• Take over family communication. Borrow your wife’s phone for a few hours so she doesn’t have to expend energy updating everyone. Be as helpful as possible and do things to remove stress. Your wife will love you for it, and it will help you feel more a part of what’s happening.
• Deal with insurance and handle the bills. For us, comparing our work insurance plans to see which one was better financially. We got someone to help us with this decision. While I definitely wanted my wife involved in the decisions, I’ve tried to handle the logistical details, such as setting up the calls and organizing the bills into folders.

Tip #4: Decide What You Want to Share on Social Media

Tons of people will want to know what’s going on. A smaller subset wants updates and will ask for ways to help. An even smaller subset of people is truly involved, assertive, and offer practical help. Then there’s family.

We decided not to share many details of our son’s condition on social media such as Facebook and Instagram. We want our son to make the decision later about whether he wants his condition known. So we send weekly emails to key people that we wanted to stay informed. We also keep text chains going with both sides of our families for real-time updates. This means about 80 people are involved and aware of the details. Our approach isn’t necessarily the right one, but it’s working. It doesn’t take a huge amount of effort, maintains privacy and security, and keeps everyone apprised of what is going on.

Whatever approach you choose, make sure you have a plan, and that you’re consistent. If not, you risk hurting relationships with friends and family and not getting the support you need.

Tip #5: Pray

I’m a Christian, and I believe God heals people. Sometimes it is really tough to pray boldly, but me and my wife pray every day for our son’s perfect and complete healing. I haven’t personally experienced miraculous healing yet, but I have heard enough to know that God is actively at work. My favorite verse is this:

My son, give attention to my words; Incline your ear to my sayings.
Do not let them depart from your eyes; Keep them in the midst of your heart.
For they are life to those who find them, and health to all their flesh.
(Proverbs 4:20-22 NKJV)

As dads with an EA TEF baby in the NICU, we may easily feel disconnected. Progress seems to be two steps forward, one step back. The constant roller coaster of having a child with EA TEF can weaken parents. But, as the dad, you are the spiritual leader for your family. You get to choose life every day. You can connect prayer to a daily practice. Pray when you wake up. Then do 10 push ups  and make the bed to set a positive tone for the day.

That’s it! I hope these ideas are helpful. If you’re  have any other advice or lessons learned as dads with an EA TEF baby, please include them in the comments!

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