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Posted on Jan 1, 2018 in Down Syndrome, Odds and Ends | 0 comments

Goodbye, 2017!

Goodbye, 2017!

We interrupt our regularly scheduled program to bring you a New Year’s update… 

New Year’s Eve, 2017

We rolled into our own driveway at 1:47am on New Year’s Eve. We weren’t out partying. We were traveling home from a nice visit with my family in South Carolina. It was FREEZING COLD – so cold that after scraping a bit of snow off the van, I couldn’t warm up for hours. My face hurt and by the time we got home, my feet were stinging from the cold and the car thermometer registered -1 degree Fahrenheit. I don’t want to know what the wind chill was.

Our five-year old, Eliana, had only fallen asleep in the last few minutes. She was so excited about flying in the plane, getting her own cup of apple juice and a cookie, and waiting for the fasten-seat-belt-sign to turn off, that she bounced all over her daddy for most of the flight. Exhausted when we got off the plane, she insisted on “playing” on the little play set outside the gate for a minute. At that hour, her version of playing meant that she sat on the teeter totter and rubbed her eyes. Ha! I figured she would sleep in the next morning because her little eyes were brightly shining at me at 2am when I covered her up in bed, but oh no. That child was up at 7am, ready to go.

Our three-year old, Charlie, quietly walked through the airport at my side, obediently holding onto the stroller. He ate his snack, studied the information about the airplane we were on, and then curled up in a little ball and fell fast asleep on my lap. His only tears came when we woke him up to walk out of the plane and he realized he hadn’t had his apple juice. We remedied the situation by purchasing the highway-robbery priced apple juice in the vending machine outside the gate and letting him drink it pure, straight from the bottle. He then quietly got in his car seat, fell asleep, and barely opened his eyes when we transferred him to his bed.

Redmond, sweet baby Redmond, traveled like a champ, fussing only during takeoff and landing when his ears hurt, and for a moment when we stopped the car on the way home for a potty break. Because the plane wasn’t full, we were able to bring his car seat on the plane and give him his own seat. But the plane was only four seats across, so that meant one of the kids had to sit alone. They weren’t having it either. So during takeoff, they sat together in front of me and Redmond, across the aisle from Rick.

As soon as we got in the air, I hooked Redmond up to his feeding tube, laid him fast asleep in his car seat, and unbuckled my seat belt (shhhh….) to sit in the next row beside Charlie. Eliana bounced over to sit by her daddy. I had to laugh a little at myself, leaving Redmond “alone” in the seat behind me. I’m totally the mother of a third child. I would NEVER have done that with Eliana. Of course, I probably couldn’t have done that with Eliana. Redmond didn’t mind a bit. When we started descending and my ears popped, Redmond fussed a bit. I laid Charlie’s sleeping head in my seat without a peep from him, moved back to sit by Redmond, and held him during landing. He quickly fell back to sleep once his ears felt better, and we carried on.

Redmond, the super-baby, slept in until 9:45am. Ahhh… The older two sat on the couch on top of their sleeping daddy, and I slept in. Once we were all awake, it was a flurry of unpacking, playing with new toys, feeding the baby and ourselves, and putting them all back down again for early naps.

I have a few moments of quiet now to think about the year that is ending.

2017: a year etched into the walls of my heart and mind. I have never experienced so many wild emotions and events in one year.

The first time I was able to hold Redmond. All those tubes and contraptions terrified me, but at least he was in my arms.

It was a year of sickness – the end of my pregnancy, the c-section, and horrible staph infection; Redmond’s 46 days in the hospital and multiple bouts with Rhino-Entero Virus; Rick’s head injury and some scary days where we were uncertain if his brain was okay, and lastly multiple colds/coughs/infections in the older kids.

It was a year of some miraculous healing and some slow and steady plodding away at health. I healed nicely from the c-section, slowly from the staph infection, and gleefully danced through the holidays eating without a thought for gestational diabetes or hyperemesis gravidarium. (I also had to buy some new clothes to accommodate all the glee. :-/ Hopefully I’ll be able to give them away pretty quickly.) Rick’s brain is actually just fine (whew) and his wound is nearly healed after 14 staples.

Redmond has miraculously recovered from pulmonary hypertension, multiple holes in his heart (no surgery needed), and a host of other health concerns. He no longer needs supplemental oxygen, and I’m starting to wean him off the feeding tube. Tears of gratitude stream down my face as I type those words, remembering that just this morning he took 75 cc’s (2.5 ounces) of milk, oatmeal, and fruit at one meal, then chowed down on Puffs an hour later! Feeding issues have been a major challenge, one we have plodded through, but he is making wonderful progress. In spite of ECMO and a huge list of medical interventions required to save his life, he is thriving and happy.

In September, with his feeding tube and oxygen tube (which never stayed in his nose.)

Fear and repeated, intentional, difficult actions to look past our circumstances and choose to trust in God marked the first half of 2017. I made a choice to sing praise to God when my heart was breaking apart. (One of my favorites is It Is Well – Kristne DeMarco & Bethel Music.) I cried out to my friends and family for help, begging them to pray when I could not. I clung to my husband for support and strength. And I sobbed as I saw my beautiful older children struggling through my sickness and separation from them, cared for by others in the best possible way I can imagine, reaching out for a mother who couldn’t attend to them. The first half of 2017 was crushing, humbling, and excruciating. Any illusions I had that my life was under my control were ground into dust and blown away. I could control NOTHING, so I clung to the Lord with a fierceness that probably only comes during times like these.

Surprises of joy and bursts of love marked the second half of 2017. God fulfilled His promises to me. Where sickness and fear had tried to break in and steal, God caused health and peace to rush in and soothe. The praises I sang were no longer a sacrifice, but expressed pure and true gratitude and love. The shock and loneliness I had felt left as I recognized the strength of the arms that had reached out to protect, cocoon, and lift me and our entire family up out of the quicksand that tried to suck us in. We received more than we ever could have imagined – emotional support, financial support, prayer support, helping hands, and so much more.

Eliana helping me return to healthy cooking in November. I closely supervised this knife business.

Our older children made it through the stunned separation from us with grace, thanks to my husband’s parents who stopped everything to become surrogate parents. Our part-time babysitter literally moved into our home to help them, planned meals, bought groceries, managed schedules, and kept everything going. I’m pretty sure they didn’t miss one day of school, library, gymnastics, or Sunday school. I don’t even know everything they did, what they sacrificed in terms of time with their own friends and family, to keep mine from falling apart.

Through the crushing, humbling, excruciating first half of the year, I learned that I had a web of support and love surrounding me that I could never have imagined. I learned how to ask for help and be a grateful receiver. Our church stepped in to provide spiritual and emotional support, prayers, meals, and even came over to clean up our landscaping, finish a painting project, and wash windows! My mom’s group has brought over more freezer meals than I can count, prayed for us, visited us in the hospital with gifts, coffee, and hugs. The women in my Bible study have listened to the deepest places in my heart and offered prayer, support, and love. They’ve connected me with resources I desperately needed. Our neighbors kept things running on the farm, doing acts of service we may never fully comprehend. My in-laws’ church provided meals for them while they were the primary caregivers for our children. My parents fasted and prayed, visited often, listened for hours as I shared my concerns, and made numerous sacrifices to support us.

My sister dropped everything, got on a plane with about two hours notice, and flew to my side during the worst of the crisis. She was my brain while I muddled through pain medication and shock, asking intelligent questions, filtering the information for me to understand, and doing the first research into Down syndrome for me. Rick’s sister and brother-in-law got us out of the NICU for a delicious meal, helped give his parents a break in childcare, and kept communication flowing with his family. I could write pages upon pages of all the support and blessings we received. I’ll end with one last thing – the shock of unexpected, often anonymous, quiet and thoughtful financial gifts from the community at large. We were so stunned by them, thinking they were unnecessary, and finding out later that others knew far more than we did about these things. (Even with good health insurance and state and national programs to assist, the cost of caring for a medically fragile child is astounding.)

I learned that the very thing that I thought would cause my life to become lonely and socially awkward has become the exact opposite. I have made many beautiful friends through this time of shock and adjustment. I have discovered a whole new world in the Down syndrome and special needs community – a place where parents just open their hearts and give one another grace and support.

At first Rick and I thought we’d skip the support groups and just live our lives with Redmond as usual. But then I received the phone number for a local woman who started a group for families of young children with Ds. I tentatively contacted her and have since met around 15 other families in our situation. They introduced me to a larger group called the Down Syndrome Diagnosis Network, also aimed at families with young children. I signed up for an online group for mothers of children born in the first half of 2017. Within that group is another I joined for mothers of children with feeding tubes. Through these groups, I’ve been given tools to help Redmond have the best life possible. Our little group has over 270 members from all over the US and several other countries, and I look forward to someday meeting every single one of them in person.

In 2017, I spent more hours than I’d like to think about sitting in our recliner in the living room, feeding my baby. During that time, I was able to bond with him in the way I wasn’t at first able to do. We had no skin-to-skin time. I didn’t get to admire his beautiful face and nurse him in the hours after he was born. But after he came home from the NICU, I did spend hour upon hour feeding him, looking into his dark eyes, admiring his soft cheeks, kissing his little toes, and whispering prayers over him. He made his own skin-to-skin time, nuzzling his face deep into my neck, staying there for hours at a time. What a thrill it is now to hear him calling, “Mom, mom, mom…” How my heart nearly bursts when he holds his hands up to me and says, “Mama!”

As low as my heart fell this year, it has risen to the heights too. Redmond is so loving and sweet. The way Eliana and Charlie adore him is an answer to prayer. Instead of expressing anger for how long we were away from them, they have expressed only joy that we’re all home together. I think that when a person faces such intense fear of loss, heightened emotions result when things start to look up.

2017 for me was a wild rollercoaster. At the end of this year, I find myself enjoying the calm and breathing it in. I’m looking forward to 2018, hopeful that it will be a less eventful year. I’m praying for a chance to focus again on being awesome, rather than just surviving. I’m looking forward to the day Eliana starts kindergarten, the day Charlie starts preschool, the day Redmond sits up for the first time, takes his first steps, and meets other milestones. I’m looking forward to turning my attention back on our marriage, maybe even spending a few nights away. I’m full of hope and much too aware that problems will come. I’m also confident that God will provide a way through any trial that may come, just as He’s been doing all this time.

Christmas 2017

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Posted on Dec 29, 2017 in Down Syndrome, Feeding tube, Parenting | 2 comments

Feeding the Baby

Feeding the Baby

This morning, Redmond is playing on his play mat, alternating between the toys, the soft arches that stick up from the mat and dangle toys above him, and his toes. He gabbers to himself, giggling, stopping to look at his beautiful hands for a moment. He is happy, active, verbal, and content. As of November 13, there are NO tubes on his face. He no longer attracts attention from strangers simply because they wonder what the bright yellow tube taped to his face is. When his face was finally free from tubes, he was 8 ½ months old.

The surgeon who placed his g-tube (a feeding tube that goes directly into his stomach) gave us instructions for feeding him that have shocked our daily routine into a new version of normal.

In September and October, we desperately tried to get Redmond to eat enough baby food and milk by mouth that he wouldn’t need a feeding tube at all. We hoped and prayed that we’d be able to wean him off the ng-tube (a long, bright yellow tube that we threaded up his nose, down his throat, and into his stomach), and we did everything we knew to do within the parameters of his health concerns, to no avail.

Our Daily Routine

Beginning in September, we started by waking him up at 9am (he’s a super-sleeper), and then feeding him breakfast. He hadn’t had anything to eat in over 8 hours, but he never acted hungry or interested in breakfast. Still, we began with “oral stimulation” to wake up his muscles (this is what we’ve been working on in speech and feeding therapy). We took various toy-like instruments and rubbed them inside his cheeks, on his tongue, etc. Then for 30 minutes we offered him baby oatmeal mixed with high-calorie milk, puréed fruits and vegetables, and a sippy cup with more milk. He typically drank between 5-20 cc’s of milk, and whatever was left of the 100 cc’s we wanted him to drink we gave him via his feeding tube.

We had a bag with a long tube which we attached to his feeding tube and we slowly dripped the milk into his stomach. That process took another 30 minutes. Because the ng-tube propped open the sphincter (a flap between the stomach and esophagus that stays shut when we’re not eating to keep the food in the stomach), he often spit up after he ate. It could be anything from a tablespoon to projectile vomiting his entire feeding. There was no pattern we could establish. We tried reflux medicine but it made it worse! We did the best we could, holding him upright for another 20-30 minutes after the feeding, distracting him if he coughed or gagged on the tube, hoping he could keep it down. So feeding him breakfast took 90 minutes.

We had to supervise him closely when we fed him via the ng-tube because he was very bothered by it and the tape to keep it in place. (First I put down a thin layer of “skin prep” ointment, then stuck a gel-pad across his cheek, then I laid the ng-tube across it and covered it with a thin piece of clear medical tape called Tegederm, and finally I put a piece of tough, white medical tape as close to his nostril as possible to prevent any gaps that he could pull on.) He made it his job to get that white tape loose, so I ended up changing it several times a day. In spite of all the tape and supervision we provided, he often managed to get it loose and pull out the tube.

If he pulled it all the way out during a feeding, all we had to deal with was a mess. But if he pulled it part-way out, it was possible for the milk to go into his lungs. Fluid like that in his lungs could make it impossible to breathe, a crisis situation, especially for someone with the early lung problems that he experienced. Less critical, but very difficult, was putting the tube back in his nose after he pulled it out. He screamed like we were skinning him alive, often forcing the tube to come out of his mouth instead of go down his throat, so we’d have to start all over again. One day he pulled it out three times!

If the tube was inserted at a hospital, he was given a chest x-ray to be sure it was in the right place. At home, we measured Redmond, then looked at the numbers printed on the side of tube to insert it far enough to be in his stomach (not his esophagus or intestine). Then we used a stethoscope to listen for a “whoosh” as we forced air into his stomach via the feeding tube. I was often concerned that the tube wasn’t placed correctly, so we watched him like a hawk. Rarely ever did we put him down and walk away during a tube feed.

After 90 minutes of feeding, he often projectile-vomited the entire meal. It was very discouraging. It also meant we went through a lot of wardrobe changes and laundry.

For lunch, we repeated the whole process from breakfast – another 90 minutes. We waited 3 hours from the start of one meal to the start of the next, so we had about 90 minutes in between feedings.

Three hours after lunch, we attempted to give him 160 cc’s of milk via a bottle or sippy cup. We tried all kinds of cups and bottles/nipples. Rarely ever did he take more than 30 cc’s (1 ounce) orally, but we gave him up to 30 minutes to try. We tube-fed the rest. It took about 45 minutes to do that tube feed, then 20-30 minutes of holding him upright to help prevent reflux.

At supper time, we repeated the breakfast and lunch process. This meal was typically his favorite and the one he responded to the best. It was a lift to my spirits when he gladly opened his mouth and ate the food, drank from his cup, and was happy about it.

At around 9pm and again at midnight, we repeated the mid-afternoon meal. Three meals a day of baby food plus 100 cc’s of milk, and three meals a day of 160 cc’s of milk only. He typically fell asleep during the 9pm feeding and slept straight through the midnight feeding until I woke him up the next morning.

That’s approximately 9 hours a day of feeding.

Some days I just couldn’t handle it and I didn’t do all three baby-food meals. I just tubed 160 cc’s instead, not offering any of it orally. When possible, I turned the job over to our babysitter. She’s amazing, sweet, and competent. (She is a GIFT in more ways than one.) My gracious mother-in-law also overcame her fear and learned how to feed him so she could babysit. I don’t want to imagine life without them.

When you feed a six-month old baby food, you have to teach them to eat. They don’t know what to do with thick or textured foods. They often spit it back out or need a lot of encouragement to swallow. So while I fed him, I alternately massaged his feet and neck to induce his swallow reflex, I sang songs and made crazy faces to get him to open his mouth, and I taught him sign language (all done, more, and good job!). The amount of energy it took to do that over and over was difficult at times.

How It Affected Me

The “side effects” of spending 9 hours a day feeding the baby became a problem. First of all, that makes for an extremely sedentary lifestyle. I’m not a super-energetic person, but there are times when I’ve felt like I’m going to lose my mind if I can’t get out of the house for a few hours and just walk around a store. Forget strenuous exercise or healthy food preparation. There’s not much time for things like showers, laundry, grocery shopping, and attending to the 3 and 4 year olds we already had – much less chopping vegetables, preparing meals, or going to the gym. And when the 3 and 4 year olds know that you are stuck in a chair, literally attached by a tube, there’s little incentive for them to obey. What are you going to do?

As I’ve watched in despair as my waist line expands, my precocious children have repeatedly asked me if I have another baby in my belly. According to them, I sure look like I do. It takes a lot of self-control to handle those comments when you already want to scream every time you look in the mirror or try to find clothes in your closet that fit…

When I said I rarely put Redmond down during a tube feed, I meant it. I actually never put him down during a tube feed until a couple months ago. I was the only adult at home and Charlie was out of control. No amount of verbal encouragement, commands, or warnings would rein him in. And he knew I was powerless to stop him. That was the day I decided I wasn’t powerless. I could risk putting Redmond down for a few minutes to deal with my other two children, who deserve my time and attention too. The look of shock on Charlie’s face when I put the baby down, got out of the recliner, and dealt with his deliberate disobedience and taunting was a wakeup call. Thank God that Redmond was okay for those few moments and I realized that I was going to have to take some risks if I didn’t want my older children to become unruly beasts.

Once we were able to accept that Redmond was not going to wean off the ng-tube like we’d hoped, we decided it was time to do the g-tube surgery. We weren’t excited about it, but we were done with the struggle. People kept telling us that our life would change for the better once we got rid of the ng-tube, and we were hopeful, but we couldn’t really understand how.

After the g-tube surgery, about 6 different people came to Redmond’s hospital room to ask me how I’d been feeding him. They could not understand. I didn’t think it was that complicated, but finally someone wrote it down and figured it out. A nutritionist visited us and we worked out a plan for his daily calories. Then the surgeon sent word through the nutritionist that we were to change our feeding plan.

The New Plan

From 9am-9pm, give Redmond ONLY the food and milk he will take by mouth. Nothing in his tube. Keep track of how many calories he takes by mouth and subtract it from the total amount he needs a day. At a very slow rate, tube the rest of the milk from 9pm-9am, while he sleeps.

Wait. What?!

No more daytime tube feeds?

Whoa.

Because Redmond’s feeding tube now goes directly into his stomach and he no longer faces the risk of aspiration or reflux, he can receive tube feeds without constant supervision. He can receive tube feeds lying down. We don’t have to hold him upright after each meal.

My schedule changed dramatically. He now receives 4 small meals a day of food and milk in a cup. And I can feed him 3 meals at the table during family meal times. The tube feeding happens while he (and I) sleep.

I’ll admit that in the first few nights we were home from the hospital, I didn’t sleep well. I got up every few hours to check on him. Has he thrown up? Is he tangled in the feeding tube? Has the feeding tube come loose, spilling milk onto the bed?

The morning I wrote the first draft of this blog entry was the first time I’d been able to write anything in quite a while. Eliana was at preschool and our babysitter took the boys out for an adventure. The house was quiet and I ignored the other thoughts that competed with writing time – it’s a great time to go exercise, cook a healthy meal, take a long bath or even an unrushed shower, finish the farm bookkeeping, etc. My soul is fed from writing, so I reminded myself that I should have time to do those other things later. I’m finally no longer tied to a feeding tube.

Since the feeding tube was taken off his face, Redmond’s development has shot ahead. He was giving so much energy to the effort to get it out that he didn’t do other things. Feeding him is now a 10-15 minute time where he joyfully opens his mouth, swallows the food, and asks for more. He happily drinks milk from a straw. We are amazed. Our therapists are now talking about weaning him off the tube entirely, which is shocking to us. We’re just getting used to this new normal.

The Future

While we can’t predict the future, our feeding therapists encouraged us that it is perfectly reasonable to expect that Redmond will only need his feeding tube for 4-6 more months. Once he turns a year old, he no longer needs primary nutrition to come from milk. As long as he can eat enough calories to sustain him, we will no longer need the tube. We are hopeful and excited for that day to come.

In my next blog posting, I’m planning to write about what this entire experience has been like for me emotionally.

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