Game Face

I wanted to add some perspective to our situation, and to our style of reporting of it.  In general, Shannon and I are super positive people.  We don’t even usually post on Facebook about our worries or life frustrations. The worst I’ll get is to comment on a bad tv show or something Apple screwed up. But about our lives and our happiness, we try to stay positive. And that’s both an outward thing (how we choose to communicate with others about our feelings on life and our current situation) and an inward thing (that when we look at our lives honestly, we can’t feel anything but blessed). But in both cases it’s a choice and it’s an attitude. And it works well for us.

(FYI – Click on photos to see them larger or to comment on them.)

In part it’s because that is the way we see our world, and is it how we try to live our lives. We’ve had a saying throughout our marriage: “Everything always works out for the Smiths.” And while our motto might make us sound a bit arrogant or spoiled, like possibly suggesting that we get everything we want, it shouldn’t. Because first, it’s based in scripture (Romans chapter 8 and many others). But further it is experiential – knowing that we’ve never needed to be in want of much and have seen God protect us and take care of our needs time and time again. It’s also rooted with perspective and context. Our motto doesn’t mean that we get everything we want or that nothing bad ever happens around us. It’s not a magic spell or some cultish “positive thinking” chant. But when your attitude is positive, and you choose to see things in a positive way, and you keep a clear head about what is and isn’t important – it’s easy to feel blessed in all things and to see things from a better perspective. For the Smiths it is a solid part of our theology and it is a way of life.

I think sometimes the way everyone else sees things is upside down. I’ll give you what is maybe an odd example from our engagement. During a sunday morning sermon about 10 years ago, I was silently praying about the idea that we were going to get married. It was of course a big step and we jumped in to things fairly quickly. I don’t remember what the pastor was preaching or exactly what he said that triggered this, but I got a clear message from God: “I was God’s gift to Shannon.” Ok!  Ever hear the expression “he thinks he’s god’s gift to women”? It means that someone is arrogant and thinks too highly of himself. But in this case it didn’t mean that. My whole adult life I was searching for a mate. I wanted God to provide me with a mate. But in the end, I believe, God provided me for someone else. You could argue that we were God’s gift to each other (and be right), but that was not the point of the message I received that day. I was being provided to her to make her life better and happier… hmm.. it starts sounding like wedding vows. Being God’s gift to her, at that moment, made so much sense. It meant everything except the world’s upside down definition of that phrase. It can have a selfless instead of selfish meaning. And that charge is something that I am reminded of a lot in our marriage. And because of who gave me the charge, I feel responsible to do my best to keep it.

So how does that story relate? It’s the same with our motto. Don’t view it upside down. “Everything always working out for us” is as much our responsibility to have the right attitude and to be positive, especially when we share with other people about our situations, as it is God’s responsibility to care and provide for us. I can tell you that I don’t always get everything I want. I have seen family and friends get sick and die. I’ve had relationships get difficult. And I’ve had stress and worries about everything from paying my bills on time to potential medical conditions. Same as everyone else. But most of the time I try to look at things right side up. God is the one who has provided everything I’ve had in the past, provides everything I have now, and continues to provide everything I will ever have in the future. God is eternal and never changing. And his ability and desire to love and care for me is a constant. There is no reason to expect anything different than what is.

Double wristbands.

So.. Game Face…?  By the way, a quick side note: It sort of killed me to name this post using a sports metaphor but what can you do?… Shannon suggested changing it to Poker Face but a certain song has ruined that term for me. Is there maybe a Star Wars analogy or quantum physics term that would work?  Well, I’ll choose to say that I mean it in a video game way. Anyway! Game Face…

I found this definition online:

#1) a confident swagger you bring out when you are about to tackle something difficult, or when you are about to take on a challenge.

At no time during our pregnancy (or the IVF process) did I ever expect anything less than it resulting in healthy twin babies. I had a lot of confidence. Yet I was silently nervous at every ultrasound. Shannon has said in other posts on this blog that she was a little less sure at the beginning. She cried after that first ultrasound seeing that both blasts planted. And at 27 or 28 weeks I got worried again, in a different way, when we were in dangerous territory. These are all totally natural feelings, and they don’t have anything to do with attitude or faith. Sharing those feelings is also ok, but in my world view, I believe there are appropriate and inappropriate ways of doing that.

Another example is that for a while into this we didn’t announce our tw-in-tentions (haha, I made up a word) to the world because things can certainly go wrong. Protecting our feelings and emotions and those of our family members was important. So we waited to share the news until there was news to share. And if something had gone seriously wrong somewhere along the path it would have of course made us sad, and we would have dealt with those emotions. But it wouldn’t change our attitude, our faith or our little family motto. Because facts and attitudes are two different things. When something happens that you don’t expect or maybe don’t want, like Shannon bleeding out over 200mL leading to an emergency c-section, you can choose to say “ok this is happening now” and move forward with as good an attitude as possible. You don’t get negative or speak negativity. You don’t broadcast negativity on Facebook. You make a decision on how to move forward, you put on your (video) game face, and you continue on with as much faith and positivity as you can muster. And you thank God that he gave you the opportunity to live in an era where it is a treatable event.

I can’t tell you how many people have asked us this question about the babies: “How are they doing?” and our response is almost always an upbeat “They’re doing good” followed with several facts about their condition. And we (also the Doctors) do think they are doing good. But that is considering context of those facts, which are things to be respectful of. When we answer the way we have, we hope people will realize two things: first that we are upbeat and positive, and second, from the facts, that the situation is serious. We hope (and sometimes request) appropriate prayer regarding those facts.

Darcy in NICU before getting off oxygen

When you blog as transparently as we have there are often choices to make about how many of those facts to share. Some parents who do IVF with an egg donor don’t even tell their kids that an egg donor was involved. But we are being completely transparent about it and many other aspects of this pregnancy.  We do that because we feel that there is no shame in it. In another post Shannon mentioned the fact that Jesus was born under similar circumstances, having one genetic parent and one (earthly) parent who was not genetic. We also are being transparent in hopes that we will encourage and inform others about the options and the journey of forming an unconventional family.

 

Declan with his shades on under the blue light.

Today I felt strongly about writing about our game faces, our approach to life, and to also (transparently) share a couple of the more difficult moments I’ve had this week. We sometimes have that game face on to try to give confidence to family members who are not nearby, and to protect their emotions. It’s not our way to worry someone over a potential situation, and I hope to not undermine that. Everything really is going good. I’ll preface the following by saying that these are just the facts or events. But they do remind us to be respectful of our situation.

The first of 3 units of blood.

Tonight as I was starting to write this post, Shannon was getting that infamous blood transfusion we’ve been joking about since her first hospital admission (week 27). We had to make a decision this morning after her labs showed a continued decline in her Hb threshold and other anemia symptoms were present. She could refuse the transfusion and continue trying to heal naturally, with the risk that she would continue getting worse, or she could accept a transfusion and most likely feel better right away, but with the risks associated with that. We agreed that the transfusion was probably necessary and eventual. Tonight she took 3 units of blood.  I’ll get back to this one in a moment.

The first unit of blood being administered.

Very late last night I walked in to the NICU in time to find Darcy crying out while the nurses poked her with a needle. Any time you walk into the NICU you have to scrub up and cover your hands and arms with an alcohol disinfectant, and that process takes well over a minute. So while I was scrubbing up I could hear her crying and could see a couple of nurses attending to her. When I approached they nonchalantly and joking told me that they were torturing my daughter. This levity didn’t bother me at all. It’s part of being in the NICU. The fact was that her IV had been irritated and puffy so they needed to find a new IV site. I had the displeasure of witnessing their second attempt, which was also unsuccessful. This consisted of flashing a bright light through her tiny foot which illuminated her veins. Imagine trying to hit a tiny vein with a microscopic needle in a foot that is about the size of your thumb. You need dexterous little fingers. Darcy’s veins have been hard to hit. They decided to give up for that moment and to try to increase her food calorie intake.  If she sets back and starts losing weight they might need to supplement with an IV which means more poking. Today she ate really good, but things can change.

Now comes the attitude part: I could tell you that story (I just did) or… I could tell you that today I saw my son’s eyes for the first time and they were amazing!

All vitals are constantly monitored.

Shannon and I both feel really good about them staying in the NICU. Here they are attended to better than they ever could be at home. They have multiple sensors on them and are constantly monitored. They can even sleep on their tummies (which they will not be doing at home for a long time) because there are alarms that go off if their stats drop even a little bit. Declan sleeps in a Giraffe isolette bed, which is a $45,000 piece of high tech equipment that keeps him warm and isolated from airborne germs. He’s also currently under a blue lamp to help with jaundice. Darcy has graduated out of her Giraffe and in to a regular newborn bassinet.  During the day shift they each have a nurse who also attends to another infant. During the night shift they are cared for by a dedicated nurse who only has them. Then there is an attending physician who manages their overall care, a supervising doctor, and an array of specialists.  They’ve seen an eye specialist, a neurological specialist, etc. They are getting the absolute best care money can buy.

Declan sleeping in his Giraffe NICU bed

Now back to Shannon’s transfusion. After the first unit some color had come back to her skin. After the third unit (around midnight) she had more energy and was feeling well enough to walk down to the NICU to feed Darcy. Declan has sort of been elusive to us. It’s been rare for him to leave his Giraffe. After the feeding Shannon got a real treat: she got to hold Declan for the first time. She snuggled him up against her skin and he was visibly at home there.

Mommy and Declan finally get some much needed snuggle time.

Here’s the Smith version of today’s report: Mother and babies are doing just fine.

13 thoughts on “Game Face

  1. Praise the Lord for His great faithfulness, and God bless the Smiths for their great faith (which God honors), in Jesus’ name.

  2. Wow! You are both such an inspiration to me. This piece really has me thinking…
    I’ll have to share those thoughts in person sometime with you both. But for now know that what you’ve written has impacted me deeply.
    Love you all!

  3. Thank you for the update. I am so glad to hear that they are all doing well. Shannon, I hope you are feeling better. I just love seeing their faces. Best wishes to the Whole Smith family. How is the big sister doing?

  4. Did you guys borrow my motto, “Everything works out for Mel”? Shannon will definitely know about this. Just know I am thinking about all of you, praying, yet confident that everything will work out. As you know, I can relate to the entire NICU experience, however, the Smiths’ experiences are their own. I maintained and continue to maintain the same type of positive attitude and faith that it is all unfolding how it was designed. We all have our moments, but it is that foundation, that knowing which brings us back to the peaceful feeling that comes over us communicating that we are not alone. I love you all!!!!!!!!

  5. Great picture of Shannon and Declan… he almost appears to be smiling.. can’t blame him.

  6. Your words were very moving and uplifting. I read your blog from yesterday to Bob and Claire after dinner. Bob faces (or deals with) emotion with levity and he said, mind you with a tear in his eyes, “that’s longer than my newsletter, he must really like to write”. We too attempt to always look for the silver-lining behind every dark cloud. A positive attitude is definitely a choice, not always an easy one, but we feel the best one and the most productive one. Your faith in God and love of one another and family, will get you through this journey. Lifting you all up in prayer.

  7. Reading all the blogs is amazing!! Mike and I think about you all every day, and love getting the updates. So pleased to hear that Declan is gaining weight and that Darcy is holding strong. Sending love to you from Cape Cod!!! xo

  8. “Things turn out best for the people who make the best out of the way things turn out.” -Art Linkletter
    I am choosing to be thankful each day that the Smith family has the medical and family support they need right now. Whatever comes in the future, I know you will make the most of it. XOXO

  9. Seems like it has been touch and go. I hope you guys are resting and doing well. Love & prayers to you all. It is such a good thing to see you both being strong for each other and for all your children.