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The Marathon That Is My Life

“…let us run with perseverance the race marked out for us. Let us fix our eyes on Jesus, the author & perfecter of our faith, who for the joy set before Him endured the cross, scorning its shame, & sat down at the right hand of the throne of God. Consider Him who endured such opposition from sinful men, so that you will not grow weary & lose heart.” Hebrews 12:1-3

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I posted this picture to Instagram [paigecparker] the night we got home from the hospital (full story below). As I’m sure many of you know, running is my “thing”. So… Most of the time everything in my life some how relates back to running. This past year has been more like a marathon for us. We keep catching that runners high and then slamming into a wall. Gaining back our momentum and here that bear comes to jump on our backs… I am confident that we will finish strong but right now we are just maintaining pace and taking it one mile day at time. After a scary couple of weeks for us I have finally sat down and compiled the best I can a summary of what has been and is going on with Dixie right now. It’s long and it’s detailed but there is no easy one word answer. So… Here it is:

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{at our first Speech Therapy appointment}
She hasn’t been eating for a while and wasn’t developing. Didn’t roll over, crawl, no babbling, pulling up etc. We have been going to our pediatrician for routine weight checks and between our 6 and 8 month check up we had lost weight (note: babies should never lose weight). We kept not really addressing the issue due to a low birth weight, being a girl (naturally small), trauma during early infancy (her tumor removal surgery) blah blah blah. She showed signs of a major oral aversion. (Oral aversion is when a child is reluctant or refuses to be breastfed or eat.) Her Oral aversion was to the point of her not putting anything to her mouth, turning her head and refusing the bottle, pacifier, toys, food etc.. Finally around 7.5 months during one of our routine check ups our pediatrician noticed something a “little odd” with her throat. We already had speech therapy lined up but she also wanted us to see an ENT. We went to a wonderful ENT here in Memphis where she was scoped and we were told that she had a submucous cleft palate in her soft palate as well as a Bifid Uvula (A bifid uvula is a split or cleft uvula. Newborns with cleft palate often also have a split uvula. The bifid uvula results from incomplete fusion of the palatine shelves but it is considered only a slight form of clefting.). Our ENT said we were on the right track already being lined up with a SLP and that we needed to also get a Modified Barium Swallow Study at the hospital. The MBS was set up so that we could see exactly what was going on in relation to the cleft palate etc. we were never concerned with anything other than the palate and it’s relation to our not eating properly. In the interim we continued our speech therapy and regular weight checks with our pediatrician. Seeing little to no improvement or drastic declines either. We were stagnant. Last Tuesday, we had our swallow study. We sat Dixie in this little foam X-day chair and began to feed her barium through a bottle, the same consistency of her formula. After 1 swallow I heard the SLP say immediate aspiration, after 2 or 3 swallows more she continued to say immediate aspiration and told me to pull the bottle out of her mouth. Aspiration?? What? Why? I could have paid you a million dollars before that swallow study to tell you aspiration was not our issue. I was shocked (as was our PCP and our ENT). They then explained to me that we could go to a thicker consistency liquid (nectar) and see how she responded to that. By this time Dixie was upset but we gave it a go. Nectar… Immediate aspiration. Huh?? What now? They explained that there is one more consistency level would could try (honey). Her “Oral Aversion” quickly came back into play and she refused anything else so we were unable to continue the study with the honey consistency. The Therapist performing the study knew for a fact that she could not handle the thin liquid. Which is the normal consistency of the formula we have been feeding her for 9 months. They said they were very surprised that we have not been hospitalized multiple times with pneumonia due to the amount of liquid that was constantly entering her lungs. They sent us home on the nectar thickened feed and hoped that the aspiration with that was only due to how upset she was during the study. The rest of the day after the study Dixie wouldn’t eat. Once again we gave the excuse of trauma from the MBS etc… By Wednesday morning she still wasn’t eating. She has always been a snacker but never had I seen her consistently refuse all foods for such a long period of time. (To put things in perspective at 9 months she was taking 12-16 oz of formula a day with no baby food. An average 9 month old takes around 24-30 oz of formula a day on top of baby food. We were also 14 lbs. roughly the size of a 3 month old and maintaining between the 3rd and 8th percentile on the growth charts.) Anyway…back to Wednesday: after refusing our morning feeding I called our Pediatrician and our Speech Therapist expressing my concerns. After our whole team (our Pediatrician, ENT and Speech Therapist) talked and compared notes they decided it would be best for us to go ahead and be admitted into Le Bonheur Children’s Hospital. Let me stop here and say, Dixie is not sick. She was never sick. We were on our way to baseball practice with a very happy baby when we got the phone call to head to the hospital. If you looked at her and observed her you would have never known anything was going on. This is something we have been dealing with for a long time with lots of tests and doctors appointments etc. Something we have dealt with silently for many reasons…lack of answers, no diagnosis and the list goes on. It wasn’t until we got to the hospital that things got real for us and they got real FAST.

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{before our first Swallow Study}
Once we got to the hospital we were made aware that Dixie had gone into full oral aversion/failure to thrive. (Failure to thrive refers to children whose current weight or rate of weight gain is significantly lower than that of other children of similar age and gender.) We found out that she was living in a state of modified dehydration. Basically putting out enough urine for us not to know that she was dehydrated. We were told that she was only getting enough nutrition into her actual stomach to just survive. Which explains the lack of energy and the constant sleeping. Imagine my fear, guilt and sadness as a mother when I hear the words that for the last 9 months we have just been merely surviving and I had no clue. Lack of nutrition in the stomach means lack of nutrition in the brain which explains lack of development. They started her on IV fluids immediately. After about 12 hours of IV fluids she started responding to the “nectar” thickened feeds and according to her O2 stats we had no reason to believe she was aspirating that. We are now at day 2 in the hospital/Thursday for those of you that are keeping up. In the meantime while our main focus was hydration and nutrition we were being seen by countless drs , residents, neurologists, ENTs, dietitians, OTs, PTs, and Speech Therapists. We were able to rule out that while we are fairly confident she has a soft cleft palate, we do not believe it is in any way related to her aspiration (the cleft palate is something we are choosing not to pursue at the moment. We will
eventually refocus our attention to it but right now it is not causing any threat or problems that we are aware of). We were told that what she does is called “silent aspiration” (aspiration of food and liquids without coughing). Which explains why until we actually saw it under X-ray there was no other reason to believe she was aspirating. Our main goal for Thursday night was to continue hydrating and feeding the nectar thickened feeds. While drs seemed to believe she was not aspirating the nectar feeds, I was not convinced. As a mother, my biggest fear is that we would be sent home and slip right back into that oral aversion/failure to thrive slippery slope. I knew that I saw her aspirating nectar with my own eyes on Tuesday during the MBS and until I saw anything different we weren’t leaving. After much hesitation due to the amount of radiation she had and would encounter the Dr agreed to order a repeat swallow study for my “peace of mind”. Transport came to get us and we got in our little red wagon and went. When we stepped off the elevator at radiology I looked at Will and said “I feel like I’m going to throw up”. I don’t know why but I was extremely nauseous. Remember in the back of our mind we knew we had 3 options (thin, nectar, honey) our next option was a feeding tube. And remember we knew that she was aspirating (according to our first MBS) 2 of the 3 options. Once we got into our swallow study at the hospital we obviously skipped the “thin” step all together because we already know she cannot handle that. We started with “nectar” and discovered there was immediate penetration (Penetration is when food or liquid goes into the trachea and stays above the vocal cords.) Basically, because of the penetration it could turn into aspiration by the end of a nectar thickened feed. I knew there was a reason I felt uneasy about her and the nectar and I am so glad we fought for the repeat MBS. She was handling the study very well thanks to the wonderful child life specialist and all of the distractions a children’s hospital has to offer so we were able to continue testing with the honey thickened feeding aka our last resort. Thankfully she responded to the honey consistency with no penetration or aspiration. Praise Jesus. We left radiology thankful for an answer. When we got back to the room and continued feeding her, she started throwing up. At this point I was in tears. We finally had a solution.. Why was she throwing up? The drs came in and told us that although she was not aspirating that thick of a feed that her stomach may not could handle it. They prepared us and talked us through our worse case scenario of a feeding tube and it really felt like that was the route we were going to take. We were tired of wondering if our baby was getting enough nutrition and the guessing game was becoming too much. We are now on Friday afternoon. Our goal: continue to slowly introduce the honey consistency feedings with hopes that her body adjust to it. We prayed a lot. We felt your prayers, a lot. We had a successful feed our next try, then we had another successful feed, and another and another. Hallelujah!! Answered. Prayer. So…. They let us come home. With a diagnosis of “dysphagia”. We still have a lot of unanswered questions, but we are home and she is eating thanks to the honey thickener (note: we are also on a special bottle from Japan called “The Pigeon” made specifically for cleft palate babies. It only requires compression and not actual sucking and has been a lifesaver for us.)

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{hospital shenanigans}
Obviously we can’t magically get back all the development we have lost or never even attained, so she will be in a lot of early intervention services, OT, PT and Speech. And only time will tell how she responds. Our prayer is that she doesn’t go back into that oral aversion. Neuro has also ordered some chromosomal testing so we are waiting on the results of that, though any results could or could not be related. We realize we have a long road of therapy ahead to try to get our development back on track and not slip back into failure to thrive. Our short term goals are nutrition and development. Right now we are focusing on weight gain and developmental milestones while on the thickened feeds. Our long term goals are to eventually be able to tolerate thin feeds again. We have been told that some people just aspirate and you don’t know why and it goes away. That’s our hope. Right now we have no idea why she is aspirating and we have no idea if she will ever not aspirate. Time is our friend. We still continue to pray for answers. Though I am ecstatic over the strides she has made in the past 5 days, I still feel like I am living with a knot in my stomach. Will she wake up tomorrow and refuse her bottle? Will she ever be able to eat something as simple as ice cream or a Popsicle? Play dates have been replaced with therapy appointments and our daily routine has changed around her feeding schedule. Our boys are well aware of what has been going on and have been tremendous troopers…but to say that it has not affected each and every one of us would be a lie. We only have so many hands and so many hours in the day.

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{morning formula prep}

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So… To anyone who text me “what is going on with Dixie?” Or “I didn’t even realize she was sick” and I didn’t respond. I apologize. There was no quick answer. There were moments when I didn’t even know the answer. I didn’t even know where to begin to explain it. It just seemed easier keeping it in our little circle. I hope that this post can clear up any confusion and maybe provide a little bit of an explanation. I ask that you continue to lift us in prayer in this situation that even we were not aware existed for so many families. I’ve never been more aware of the simple things that we take for granted, like that ability to eat and thrive. I am confident that Dixie will grow up to be a fully functioning girl and young woman. We are surrounded by a great team of doctors and therapists that I truly feel like care about us. Though we don’t know what our future holds we will praise him in this storm and take it one day at a time. We do know we have options if need be. Our daughter will not go without the proper nutrition she needs. We know that this is not a death sentence. Even though I keep asking why me, God? I have 3 kids, a husband that travels for work,no family in town and friends that I rely on entirely too much sometimes. I know there is a reason why he is writing this as part of our story. I continue to be a pillar of strength for him while not promising I won’t have moments of weakness. We are well aware that there are families facing much bigger issues than ours on a daily basis. We will continue to restructure according to our new schedule though it may not be what we had planned we know it’s all part of His plan. Thanks again for all of the prayers, calls, texts, Facebook messages, visits etc… We are truly blessed with a community like no other that I am forever thankful for. I will do my best to keep you all posted while sometimes that doesn’t come without a lot of words… Thanks for being a part of our journey. It takes a village, y’all!

XOXO,
Paige

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2 thoughts on “The Marathon That Is My Life

  1. I was shown your post by a friend of mine. Both of my boys were failure to thrive (now ages 3 and almost 6). I know how scary that feeling is, and just wanted to reach out and let you know if you ever need anything you are welcome to contact me. I left our website which had the boys journeys on it. We have a different diagnosis, but it is still a similar feeling of what’s next. My boys are treated at LeBonheur as well. Know that you and your family are in our thoughts and prayers.

  2. Pingback: Continuing Dixie’s Story… | sanity amongst chaos

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