HOME

Home, at last! I apologize that it has taken me so long to write a new post and give everyone an update. Willie keeps me busy and I'd rather be snuggling him up than doing anything else. So, this post (and probably all future posts) was composed during many days of nap time combined.

Having Willie home feels like a dream. I stare at him and can't believe he use to take residence inside of me. Daily, hourly really, I can't believe he is mine. Being his mom makes every day have more purpose, more value, more joy. But before I update on what our life is like today, let me rewind...

Willie

About a month ago, on Willie’s 50th day in the NICU, we were discharged. We got to bring Willie HOME to our HOUSE in Tulsa. We got to take him beyond the hospital walls. He got to go outside for his first experience of sunshine and fresh air. He had his first car ride down the turnpike to his nursery full of toys and doodles waiting to smother him in dog licks (literally). It was a big day and our hearts were overflowing of thankfulness. It was a day that we had waited for and were unsure of when would come.

First off, I want to praise OU Children's Hospital and the amazing facility, staff, and resources they provide. In an environment of challenge and some sadness, the facility consistently surprised us with their accomodations and positive attitude even on the days we weren't the easiest parents to deal with. Life in the NICU is HARD. I tried preparing myself for it months in advance by talking to other moms who had already lived it. But still, until you have repeated the same routine of waking up, going to the hospital, seeing your baby live in an institution, being poked and messed with constantly, only to go home late at night to wake up and do it all over again, you can't understand what it's truly like.

We would likely still be in the hospital had we not chosen to go forward with Willie having a G-Tube (gastrostomy tube) surgically put in his belly. Like in my last post, I shared that Willie was struggling to eat from a bottle. It wasn't that he isn't capable, he just didn't show much interest. After lots of practice, feeding exercises, and a swallow study, we decided having a feeding tube put in was what was best for Willie and our family.

Willie receives all of his milk and medications through his tube. A medical supply company delivers all of the supplies we need to get Willie’s needs met. I’m not only his mommy, biggest fan, and advocate, but now his full time nurse as well! Adjusting to a baby is a task on its own, but watching the clock to make sure I don't miss giving one of his many medications is one more thing we have had to adjust to. Because he gets all of his nutrition through his tube, he is (currently) fed every three hours over a two hour span. This basically means in the one hour at a time he is not connected to his pump, I have time to change his diaper, play for a short time in his swing or floor gym, then it's time to clean out the lining of the pump, warm his milk, prime the pump lining, and get him hooked up again! Laundry and vacuuming now sit on the back burner. Most of the time I don't even know where the day goes.

Over the past month Willie has started feeding therapy and physical therapy. We visit one of his doctors at least once a week whether it's his pediatrician or dietician in Tulsa, or traveling to the hospital in Oklahoma City to see his cardiologist or endocrinologist. Luckily, he loves his car seat and doesn't mind the long rides! Between all of these appointments, making sure I'm getting him all his meds, cleaning out his feeding pump and supplies, and all the other normal baby tasks, we stay busy!

Next week Willie turns 3 months old. He is officially ten pounds! We are so proud of him for getting chunky and strong for his next heart surgery. At bedtime he is sleeping an eight hour stretch! He doesn't love tummy time yet, but he is getting stronger neck strength. I know he will be able to hold his head up on his own in no time. He's started smiling regularly and gets more alert each day. He hardly cries and does a great job of playing independently- sometimes 1-2 hours alone!! I don't want to jinx it, but he is basically a dream. You would never know his first two months of life were harder than most of us will ever experience.

Coming up next month we take Willie to see a well known doctor who specializes in clubfoot. We will travel to Saint Louis to see what the best next step is. Sometime this summer will be Willie's next open heart surgery. We are unsure of a date yet as it depends on how things are looking from appointment to appointment. I hate thinking of the time period that will follow his next surgery. Seeing him back in the hospital, hooked back up to all the machines, his chest opened again, the breathing tube down his throat, it overwhelms me all over again. But as negative thoughts creep in my head, I remind myself of how quickly he rebounded from his first surgery. I know he is going to do it again! Until he goes back into the operating room, I am soaking up every snuggle, stare, cry, and smile from my baby boy.

Me

The day we were discharged was almost as scary as it was exciting to me. I was so nervous to have him home, an hour and a half away from the doctors who know him. I worried that I would mess up one of his feeds. Forget how to operate the pump. Miss one of his medications. Forget how to give CPR should we ever have to use it. It took a few days, but Michael and I finally got in a routine. We split the tasks of getting his feeds and meds prepared. We developed a schedule for bath time, getting ready for bed, his physical therapy exercises. The planner in me needs the schedule to feel good.

One thing I have had to adjust to is the day getting away from me and realizing I have gotten nothing done around the house. Most days I am lucky if I got a shower and have dinner made for when Michael gets home from work. Before Willie I used to make daily checklists of things I wanted accomplished by the end of the day. I have transitioned to a weekly checklist and am lucky if I get those things done in a weeks time! As I battle myself in feeling like I'm not on top of things enough, I remind myself that in ten years when I look back at this tiring, hectic time, I will remember the quality time I spent with Willie, not the dusted shelves and empty laundry basket.

I would like to tackle a big and controversial topic while also giving some perspective into how things played out for me. Breastfeeding. This is something some people feel very passionate about. To be honest, looking back, I think I cared about breastfeeding because of what other people would think if I didn't do it more so than the health benefits it would have provided to Willie. I wanted to breastfeed because I had been told it provides more nutrients and immunities than formula. That breast feeding creates an unexplainable bond between a mom and baby. Who wouldn't want all of those things? But when I wasn't producing enough and the doctors brought up giving Willie formula to me, I feared judgement and shame from the moms breastfeeding had worked out for. You hear "Breast is Best" throughout society and when the hospital lactation consultants scare you into thinking your baby won't survive unless fed breastmilk, you feel the pressure. Being so limited as to what I could do for Willie while he was in the NICU made me want to provide breastmilk for him even more. Between only being able to pump, to breaking out in hives from stress and worry, to not being able to hold Willie for ten days while recovering from heart surgery, I had to throw in the towel. One of my dear friends reminded me during this trying time, "Fed IS Best."

So we began to give Willie formula (Spoiler: he did just fine!! He's gained weight and no one can tell me my bond with him is lacking). But, I feel like a lot of moms hit rock bottom when formula in a bottle becomes their conclusion. As moms we feel like we did something wrong, or we didn't do enough. We feel judged and criticized by others when they ask if we are breastfeeding and we have to shake our head no. Unfortunately, my conclusion didn't come at just formula in a bottle. Willie took it a step further. We quickly realized not only would Willie not be able to get breastmilk from me, he wouldn't take formula from a bottle either. This caused me to spiral into a whole new bird's eye view of what was important. But in that moment, all I could think was what in the world do we do now?

Two things we get asked a lot:

1. Why won't Willie drink from a bottle?

We believe Willie won't take a bottle for a few reasons- when a baby is first born it is natural instinct to suck and drink milk. Willie was not given the opportunity to drink his first bottle until almost a month old. He is also a heart baby which means he tires more quickly than a typical baby because his heart is still having to work twice as hard. Also, because he has Down Syndrome, he has low muscle tone which causes him trouble with sucking and latching.

2. How long will he have the G-Tube?

Willie will have his G-Tube as long as he needs it. We only practice using a bottle once a day because the amount of calories he burns in trying to feed using a bottle, is more calories than he is taking in during the process. This goes against our goal right now which is to get him as bulky and heavy as we can for his next heart surgery. The therapists and doctors believe that after his surgery this summer, when his heart is pumping and operating at a normal rate, he could take off with feeding from a bottle.

When people ask me about his G-Tube and how long he will have it, I go on the defense. I know people probably ask out of curiosity and not from a place of looking down on Willie for not drinking from a bottle, but as most any parent can tell you, you get defensive when it comes to your child. As a woman (whom I had never met and who is also a mom) asked me over the weekend, "What is wrong with your baby?" Yes, I get defensive! Nothing is wrong with Willie having a feeding tube. He is getting the same nutrition as the baby who actually nurses from their mom's boob. Will Willie have his feeding tube for six months or a couple of years, I do not know. What I do know is that it doesn't matter. Again, I keep going back to "Fed IS Best". I simply roll my eyes at myself for being so worried about switching from breastmilk to formula. It seems like a small concern when I was then faced with the fact that my baby wouldn't even drink from a bottle. (I also roll my eyes at the lady who asked such a stupid, inconsiderate, and ignorant question). Moms, we have to cut ourselves and others some slack.

This brings me to my biggest wish and thing that I ask from everyone. This is something I even have to remind myself of on the hard days. We do not want to focus on the things that Willie can not do. We know that it is likely he will meet the milestones of growth and development at a slower rate. Even though we have him in PT and feeding therapy along with always practicing, babies with Down Syndrome typically develop at a slower pace. Add in Willie's heart conditions and it sets him back a bit more. The idea of focusing on Willie's strengths keeps our outlook positive. With this idea in mind I go back to the bottle questions. I don't want to talk about how Willie can't drink from a bottle. Instead I want to talk about how he's beginning to hold his head up on his own and how he's begun following toys with his eyes. Think about yourself as an adult. Do you enjoy talking to your friends about how you can't make the fun group trip because you don't make enough money to pay for it or how you don't want to tag along to the workout class because you fear what others will think since you're so out of shape? We don't enjoy talking about things we struggle with because it often makes us feel worse about ourselves. I don't want to focus on the things Willie can't do but all the amazing things that he can.

Today

Willie boy is such a good baby. I look at him and don't see anything but my son. It seems crazy that something I feared so big, is now something I don't even see or think about. Michael and I joke how we don't even see Down Syndrome when we look at him. All we see is the biggest miracle God could have ever blessed us with. Last summer when we got the news and thought our life had been turned upside down, to now when our life seems exactly right, I wouldn't change a thing. He fills a hole we did not know was even there. He makes us love greater and dream bigger. Will is my heaven on earth.

"For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future."

Jeremiah 29:11