Button Snafu

We almost made it to the point where I did not have to replace my daughter's g-button. Almost. I thought I was in the clear, that fate had smiled down on me and only allowed it to come out when my husband was there. I have held Wimberley before while he replaces it, but I have never actually had to do it. I was at the park Monday morning with my friend, Ashley (a fellow tubie mom I featured last week) and we were talking about her upcoming trip with her husband. Her mom would be caring for her two boys and Ashley mentioned her mom's nervousness and anxiety about the button coming out. Ashley told me about using a "catheter" piece that she had laid out for her mom to help with the button insertion. I had no clue what she was talking about but learned about this tool that was included in the packaging with the button kit. Little did I know I would be SO grateful for that nugget of information a mere five hours later.

 

That afternoon, Wimberley was playing on my bed while I folded clothes. Brother bear was still napping (nothing short of a miracle that he was able to miss out on my full panic mode). I walked around to start putting laundry away and there it was, on the floor at the edge of the bed. Wimberley had slid down on her tummy and it must have caught just right and popped right out.

 

 

 

Above is a picture of what the g-button looks like. Wimberley is the proud owner of the Mini-ONE. The device is genius - I am sure the person who invented it is sitting pretty in some mansion because of the riches he acquired from this invention but let me tell you, he deserves it. This little medical device is a lifesaver for so many and I am so grateful that Wimberley lives in today's day and this location because we had access to this.

 

When Wimberley's button popped out this week, the balloon (that acts like a stopper and keeps the b-button in her stomach) was still fully inflated. When I saw it, I started to panic, first on the inside and then physically.  To get the button back in or to put one in, you have to start with the balloon being inflated so it can slide in the hole in her tummy. Once you have it in, you have to use a syringe to push water into the balloon port to inflate the balloon so it can act as a stopper and keep the button in place. The feeding port goes straight through the middle of the balloon so food (liquid or pureed) can go straight into the stomach.

 

I knew I had to get it back in and knew I would have to do it on my own. I went and got the supplies I needed and immediately deflated the balloon so I could get it back in. Now, Wimberley is aware of this thing in her tummy and absolutely dislikes for it to be touched or moved or anything. When I laid her on the bed, I told her I was going to have to put her button back in and she immediately started to cry and say "No, Mommy". I remembered Ashley's tip from earlier and got the catheter. I was literally pouring sweat.

 

I'm not going to lie, as grateful as I am for her button, it seriously creeps me out. The thought of a hole in her body and her stomach seriously makes me cringe. I dislike looking at it, dislike feeling it, and usually whenever I check on it, I feel for it through her clothes. I am basically a wimp about it. I have been her main caregiver throughout her life and obviously had to access it the most when we were using it for nutrition, but since we are not using it daily now (thankfully), it is like I have this weird love-hate relationship with it. So when I lifted up her shirt and saw the hole in her body, it made me cringe and sweat even more. I literally stopped and prayed out loud for the strength to quickly replace it to the one person who I knew could give it to me in that moment.

 

(I should mention that I know a lot of mommas who have children with buttons and this process is not nearly as daunting as it is for me. At the end of the day, replacing it is not that big of a deal and they handle it with strength and grace and just do it. For me, I am better at the information gathering and appointment making and question asking. This part is just hard.)

 

And I did it. The catheter helped me immensely. Like, lifesaver status. Because not only have I been lucky and had my husband there when it has come out previously, but it has always come out when there is more than one person. Because Wimberley struggles against you when you put it back in big time. And this time was no different, except I had to hold her down and put it in alone. I sang "Jesus Loves Me", one of her favorite songs, and got her a sucker to try and occupy her. It worked, I got it back in and she was fine two seconds later.

 

Oh, and then I had to shower because I was soaking wet with sweat.

 

All in all, I was proud of myself and grateful I was pushed into this opportunity because I can connect even more with this process and with what doing that looked like and felt like.

Warrior Mom of the Week: Meet Ashley

Thank you for checking out a more detailed story of my sweet friend, Ashley. She was my saving grace summer 2014 and continues to be that for me on several levels. In June 2014, my neighbor mentioned to me that there was a mom in our neighborhood whose son had a g-button like Wimberley. She asked if she could give her my number and Ashley called me later that week. We met up for coffee and instantly clicked. One, because we are similar in many ways, but most importantly, because we are warrior moms with the same little warrior baby issues. The WHY behind each of our babies having the g-button is different and our journeys have been different but the bottom line is both of our little ones have the same unique need: that eating orally is a struggle.

The Judd Family - photo taken by Genna V Photography. Find her at http://gennavphotography.com/

Ashley just gets me. She gets that it makes me wince when someone tells me how tiny Wimberley is. She gets that going to a restaurant with a baby who is fed by tube sucks. She gets that our schedule was run by that feeding pump and that you get so nervous in large crowds with the tube hooked up. And she gets that this journey is a marathon and it is hard. I mentioned Ashley in a previous post, when I said that empathy is something every Warrior Mom needs and believe me, I still stand by that. When I asked Ashley if I could feature her in my first Warrior Mom of the Week, I was ecstatic that she agreed to share her story and even more ecstatic after reading it. I know Ashley. I know her story. I love her son. But re-reading her story made me celebrate their progress all over again because in our busy day to day lives, we forget to focus on others and we forget, even of those closest to us, what they are dealing with within their home and within their family.

Ashley found out at 36 weeks, via ultrasound, that her second son, Wesley would be born with what the doctors thought was Multicystic Dysplastic Kidney Disorder. According to the ultrasound, it was present in his right kidney. It was explained to Ashley and her husband, Joe, that most infants with this diagnosis will lose the kidney that shows signs of the condition and they were given a checklist of things they would have to watch for the rest of his life to ensure safety to his remaining kidney on the left side. What was also mentioned at that appointment was that they could not confirm at the time that the MDK was not present in his left kidney as well, making it a potentially lethal diagnosis. We were immediately sent to a urologist at Children's in Downtown Dallas to do an in-depth ultrasound and confirm that the diagnosis was exclusive to just the right kidney. We left that appointment with good news and a lot of research. It appeared that Wesley would lose his right kidney, but the left kidney was perfectly healthy. Praise Jesus! 

Wesley joined Ashley's family the evening of September 5, 2013. He came out beautiful, pink, and well...squeaking is the best way to describe it. The NICU team was in the room given the still slim possibility of a fatal diagnosis received in the womb. He was monitored thoroughly and immediately sent for an ultrasound of his kidneys. Ashley says, "Joe and I prayed continuously for good news, but at the same time, we kept wondering, why did our kid sound like a squeaky toy?? 

The doctors reassured Ashley and Joe it was just amniotic fluid that needed to cleared and he would be completely fine. They were also were given the incredible news that what was showing up on the ultrasounds was not MDK, but actually pockets of fluid from hydranephrosis of the right kidney (a condition in which the kidney does not drain properly). Hydranephrosis is not that uncommon and generally works itself out over time. Ashley remembers being so grateful that their baby boy was blessed with two kidneys!

After coming home from the hospital, every single person and doctor that met Wesley made the same comment, "Man, he is loud. Why does he squeak so much? Is that just his breathing?" Ashley and Joe has started to notice his breathing was becoming more and more labored, especially during feedings. She could feel his poor rib cage press into her every time he sucked and swallowed. It was obvious to Ashley that eating was a lot of effort for Wesley. Generally feedings would take well over an hour, and even then, Wesley would not get much nutrition because he kept falling asleep.

Ashley says, "By the GRACE of GOD, my pediatrician quickly realized he was at a loss for what was going on and sent me to one of my warrior teammates, Dr. John McClay, an ear, nose, and throat doctor (ENT)." Dr. McClay looked at Wesley and realized something more was going on. He sent Ashley and Joe home with breathing treatments and the start of reflux medication. After two weeks, Ashley called Dr. McClay one morning in tears to report that she honestly thought her son was dying. Ashley felt like Wesley was shriveling away, and his breathing was becoming more and more labored. Dr. McClay told Ashley to pull over on the side of the highway and he would have a plan for her. Ashley felt desperate.

He called back and told Ashley that they had earned a new teammate, Dr Michael Russo, GI, and he would meet Ashley and Wesley at his lunch hour at his office. She hurried there and she knew she had met the man that would save her son's life. (This part literally brings tears to my eyes because Ashley is who referred me to Dr. Russo and I feel the very same way about him.) He took Wesley from Ashley's arms, sat her down on the chair, told her to cry it out, and he would have them checked into the hospital within the hour. Ashley says she will never forget the moment that he looked at her and said, "You do not have to do this anymore on your own." She sobbed out of pure exhaustion, fear and relief. Ashley, Joe and Wesley started their first hospital stay that day, and started feeds via the nasal gastrointestinal (NG) tube. It was a slow start to see what Wesley's gastrointestinal system would tolerate, but Ashley immediately saw color come into her baby's face and his eyes actually open and look at her.

Wesley received his NG tube in October of 2013, a mere 3 weeks post-birth. He had several more hospital stays in their future, including two treacherous and long PICU stays that both broke and rebuilt her heart, but Ashley and Joe were finally seeing their son start to thrive. During their journey, several diagnosis were thrown around but the ones that were finally settled upon were: Hydranephrosis of the right kidney, Subglottic Stenosis, a Partial Paralyzed Right Vocal Cord, severe GERD and Failure to Thrive. Wesley did not actually reappear on the growth charts until he was 6 months old, and it has been an epic battle to keep him on there. 

Ashley wrote this when I asked her to summarize her experience with Wesley as an infant. "During his first year of life, I spent most of my days in and out of specialists offices. To date, our warrior team includes: Our Pediatrician, a Pediatric ENT, a Pediatric GI, a Pediatric Pulmnologist,  a Pediatric Urologist, a Geneticist, two in-home nurses, a Physical Therapist and a Feeding Therapist. Wesley has made strides that none of these doctors thought he would do. Given all that he had to overcome, he now looks and plays just like a normal little boy, although on the small side, and a little delayed physically. My journey is not over yet, and I fully anticipate hard days in the future. But today we are living in the moment, and celebrating what a rock star my son is."

I asked Ashley two questions that I think are applicable to life as a Warrior Mom and I love her responses. Hopefully they will help you as much as they have helped me.

What is the most important thing you have learned since becoming a warrior mom?

This was a very tough question for me. I feel like I could write an essay on all the things I have learned in the last two years. But I would have to say, that the most important thing I have learned is unequivocal compassion. I have met hundreds of moms over the last two years that make my journey seem simple and small. There were days, especially in the PICU, where all I wanted was someone to bring me clean clothes and hold my hand for just a few minutes. Now, whenever I hear of a mom going through struggles, my first response isn't always, "I will pray for you". It is "I am on my way, and praying continuously."

What is one piece of advice you have for other warrior moms?

Reach out. Let people in. Your days are dark and lonely and you will run the gamut of emotions on a constant basis. People often want to help, but medical equipment and honestly, the pure range of emotions are overwhelming for many people. When friends call, answer the phone. When they ask what they can do, tell them and do not be ashamed to accept help. You will come back to life quicker if you have a support system in place. 

Y'ALL. I just love Ashley. Her strength and determination and passion for her son and for other moms going through a tough time. Bottom line, she is fabulous. And there is more to her story. Stay tuned.

A few weekends ago, our pastor gave a message. A hard one to hear. His basic gist was that if God were to give us nothing more, we would still have every reason to be grateful to Him for the sacrifice He has already given us. Basically, what He has already done for me trumps everything that is to come in my future, highs and lows. It has really stuck with me. Several years ago my mom got me a book that documents Christmas each year. Kind of like a Christmas diary. There is a spot for the traditions you followed, your Christmas card, and a brief overview of the year. I have loved filling it out and it is special at Christmas each year to get the book out and look back on our many blessings as well as the struggles that we may have endured. This was 2014.

So when I got it out this year, this is what I found:

An empty page where 2014 should have been. Multiple feelings washed over me all at once. Sadness. Gratefulness. Guilt. Shame. And then reflection.

Sadness. Sadness for what looked like a year full of nothing. Sadness that a year ago I felt in such a tough place that I didn't take the opportunity to get this book down, dust it off, and document our lives. Sadness that I didn't take the time or make the effort to put together a Christmas card when in previous years, we almost always had one. 

Gratefulness. Gratefulness for where we are today, for Wimberley and her progress. For surviving that season that felt so lonely and dark. Gratefulness that this year our Christmas cards are in the mail and our book is full of tribulations and triumphs that happened this past year. 

Guilt. Guilt that I didn't take advantage of that first year with Wimberley, despite the issues we had. Guilt that the book for Graham's first two years of Christmas with us is full of events and activities and a shining Christmas card and Wimberley's is blank. 

Shame. This is probably the hardest one. Shame that I didn't glorify Jesus more. Don't get me wrong, I turned to Him more than I feel like I ever had in my life. I was in constant dialogue with our Father. I was grateful for the progress we made, every milliliter Wimberley took by mouth. Grateful for every phone call, every text that showed us how loved we were. But still, shame. Shame because even though I turned to God more than I ever had and relied on him more than ever and worshiped him more than ever, I still didn't realize that all of that didn't matter. Because in those moments last year, I still didn't get that I truly had so so so much more beyond my little world. That God owes me nothing. Literally, nothing. Wow. That is so powerful. 

Being a Warrior Mom is something I am thankful for now. That wasn't always the feeling when we were in the thick of it and I am grateful that I am able to be in the place I am now. But I am thankful for it because of what it has taught me. So this year, my book will be full. (Picture will have to wait until our Christmas cards come in.) And my new daily prayer is that every year here on out be full, no matter the season, no matter the triumphs and struggles we go through because Jesus is enough. God has already done enough for me.