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Feeding the Baby, Part 2: We’re FREE

Posted on Feb 3, 2018 in Down Syndrome, Feeding tube, Health, Parenting | 0 comments

Feeding the Baby, Part 2

Redmond’s first feeding

My son, Redmond, is 11-months old and thriving. He was born with congenital heart defects, persistent pulmonary hypertension, bi-lateral hydronephrosis, and Down syndrome. As a newborn, he needed a ventilator to breathe and was on ECMO for six days. Too heavily sedated to nurse, he required a feeding tube. He never learned to nurse or take a bottle effectively. In Feeding the Baby, Part 1, I explained our journey to get him to eat by mouth.

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At the end of 2017, I detailed what it took to feed Redmond during the months leading up to his g-tube surgery. The surgeon gave us a plan that thrilled me! After surgery we were to only feed him orally during daytime hours and make up the difference overnight through his feeding tube.

That process was significantly easier than what we’d been doing, but it had it’s difficulties too. Every day I carefully calculated everything Redmond ate and drank by mouth. Before I went to bed, I totaled it up, subtracted it from his daily goal, and prepared his overnight feed. His milk went into the feeding tube bag. Then I set up the pump, primed it, and hooked it up to the end of the tube that went directly into Redmond’s stomach. I set the slow rate at which he was fed and went to bed.

Prior to overnight, continuous feeds, Redmond slept soundly for 12 hours most nights. With continuous feeds, almost every night we woke to Redmond’s cries. Sometimes he had thrown up, sometimes his tube had disconnected and spilled milk and stomach contents in his crib, and sometimes he was just uncomfortable. We changed his sheets and pajamas a lot. We didn’t get as much sleep as we would’ve liked, but it was still a lot easier than before.  Click here for more.

We’ve Moved

Posted on Feb 1, 2018 in Devotional, Down Syndrome, Health, Parenting, Spiritual Life | 6 comments

There’s a famous poem about Down syndrome called “Welcome to Holland.” On our first day in the NICU, I received a large, white binder full of information on Down syndrome and local resources. The poem was the only thing I could bring myself to read. I found it comforting in the middle of the chaos. As we’re nearing Redmond’s first birthday, I see the truth in the concept. So here is my (longer) description of the move our family has experienced in the last 11 months…  To read more, click here.

NICU Post Traumatic Stress is a thing?

Posted on Jan 13, 2018 in Down Syndrome, Feeding tube, Fertility, Health, Parenting, Wisdom | 0 comments

It’s been a hard year and a half with my pregnancy and Redmond’s health challenges.

When I was single, I marked hard times by watching Netflix in bed, isolation, binge eating, and fantasizing about the things I didn’t have. In psychiatric terms, I’ve learned that I disassociated for a time. I didn’t know how to handle the stress of what was happening, so I shut down. I went through Christian counseling in my twenties and am incredibly grateful to the wise woman God placed in my life to help me process some hard things and move past them.

Several years before Rick and I married, I taught myself how to deal with anxiety in a natural way. I learned to relax and not let things get to me like they had. But when I married him, I warned him that depression had been a bit of a dark cloud over me in the past. I had mostly dealt with it, but am always concerned about it coming back. When I got pregnant with Eliana and experienced such extreme sickness, it did come back. I was miserably ill, newly married, in a place I hadn’t lived since I was 12, in a new church, and without an established support system.

For about 7 ½ months, I spent the majority of my time on the couch, and it got to me. I didn’t call my friends often. I didn’t read my Bible. I was so sick that I didn’t go much of anywhere. When I had to grocery shop, I cried as I struggled to make it down the aisles – a mix of nausea and sciatica and exhaustion making me feel like the floor was pulling me in. I didn’t do much of anything, except feel very, very sorry for myself. I was upset with God for not waving His magic wand over me for my years of (somewhat) faithful service and letting me sail though pregnancy for the first time at 37 years old. Embarrassed, I was concerned that others thought I was being dramatic and attention-seeking. At one point it got so bad that I actually had a fleeting thought of ending the pregnancy.

To read more, click here.

Goodbye, 2017!

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

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.

To read more, click here.

Feeding the Baby

Posted on Dec 29, 2017 in Down Syndrome, Feeding tube, Parenting | 3 comments

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.

 

For an update on how Redmond is doing now, click here: We’re Free!

Who Needs Normal?

Posted on Dec 23, 2017 in Devotional, Parenting, Spiritual Life, Wisdom | 0 comments

I’ve spent a lot of time in Facebook groups for moms of kids with Down syndrome this year. It’s been helpful to me to see other children with Ds, to hear what their moms are going through, and to learn all I can about the ways 47 chromosomes can affect my child.

Recently a mother posted that she had confessed to a friend that she sometimes still grieves that her daughter has Down syndrome. The person she spoke to answered her harshly, saying she should just be grateful that she has a baby at all.

Whoa.

The mother asked us if we ever felt like she does, wondering if she should be ashamed of herself and her feelings.

Goodness, no.

A lot of people in the Down syndrome community really celebrate the diagnosis and claim that they wouldn’t want their child to be any other way. I look forward to the day I feel that way too. But when I found out, I felt like my entire world was crumbling and God had withdrawn his presence from me. My mouth went dry, a wash of darkness went over my eyes so that I couldn’t see for a moment, and my body trembled uncontrollably. We’d been warned the night before, right after he was born, but I hadn’t thought it could be true until that moment. I was in my hospital bed recovering from an unplanned c-section, Rick was an hour away at the nearest NICU with Redmond, and my midwife and the OB who did the c-section were with me. The news came on the phone from the NICU nurse who had just finished explaining all Redmond’s medical concerns to me. I asked her the question, sure she would say no. She didn’t.

Two weeks later we received the results of his genetic test, confirming the suspicion. Young and bright medical professionals encouraged us, smiling as they told us how much we had to look forward to with our son. They explained that it’s a great time to have a child with Down syndrome because there’s been so much research and advancement in the last 20 years. If Redmond had been born 30 years ago, he would not have lived. I am incredibly grateful for the gifts God has given those with scientific minds who seek out answers and find incredible ways of providing healing and hope.

In spite of the bright outlook of the doctors, it took a few months for me to accept that the diagnosis wasn’t wrong. Redmond’s face was so covered in tubes that it was hard to see his distinct features. I obsessed over what “Down syndrome-type features” Redmond did and did not have. He has a strong palmar crease in his hands, but not much of a nuchal fold. He has some pretty crazy toes, but not the typical sandal toes. His fingers aren’t square, his ears aren’t low set, but he has a flatter nasal bridge. Surely the diagnosis was incorrect. He looks a lot like Eliana did as a baby. I considered asking the doctor to run another karyotype, unconvinced that the first one was correct.

I was terrified about what Down syndrome meant for Eliana and Charlie. Had I ruined their lives? Would I be able to parent them like I wanted to while I was caring for a disabled child? I was so embarrassed too. Terrible shame caused my face to flush hot when I thought about sharing the news.

What I was so embarrassed about, I cannot recall. Since that time, I have come to see that life with Redmond will greatly enrich our family, giving Eliana and Charlie a sense of compassion that many people lack. They will be able to see people who are different as individuals, worthy of friendship and love. We care for Redmond as a team. Rick and I are the parents, of course, but I work to actively involve them in everything I can. Eliana is a wonderful physical therapist. Charlie is a terrific diaper fetcher and bath time assistant. They adore their brother and have been told that he has Down syndrome. How much they understand of that at their age is questionable, but it will come with time.

My feeling that God had withdrawn his presence from me was just that – my feeling. God’s presence never left. He’s changed my heart to understand Down syndrome as a gift, to know that we are the best parents for him and we can trust our instincts, and that every moment we have with Redmond is a blessing. Writing those words still causes tears to rise and an ache in my throat. I do not claim to understand this gift. But I believe with all my heart that it is true and will become clearer every day. God has shown Himself faithful and mighty as He has taken this medically fragile baby and healed his body. One thing yet remains – feeding – and I have no doubt that He will soon eat and drink enough on his own to sustain himself.

Why in the world would I put such thoughts into words and publish them for the world to see? I have no shame in what I felt and thought, and if it can help one other parent in our situation feel better, it is worth it. It is understandable. We had no frame of reference for Down syndrome. It was a thing that was going to make our life hard, to make our family weird, and we really dislike weird. Oh, how we’ve treasured “easy,” “normal,” and “typical.” But if you know anything about us at all, you know how laughable that sentence is. Rick and I are far from normal or typical, having married for the first time at ages 47 (Rick) and 36 (me). It was not easy to be single for that long. Rick lived with his parents until we got married. We had our first child at ages 48 and 37 and our last at ages 52 and 41. As a single woman, I became an ordained pastor. We are weird! And we LOVE the weird people in our lives. Why we thought normal was so good is absurd.

Hard is another thing. I’d be lying if I said we’d come to embrace hard things. Rather, we’ve come to realize that we can do hard things. Hard things will not break us. Hard things will not break our marriage, will not break our faith in God, and will not break our spirits. Hard things are a part of life and God uses them to grow us into who He is calling us to be. Does God cause hard things? I believe we live in a fallen and broken world and hard things happen as a result of that. My theology isn’t perfectly worked out here, but I’ve learned that formulas do not exist. God doesn’t work that way: if you do A, then God will do B. God’s promises are true, but His timing is not our timing. We still do what we can to please God, to obey His word, but we no longer expect that our lives will somehow be free from difficulty or pain. The rain falls on the just and the unjust alike (Matthew 5:45). Job was a godly man, and yet he suffered terribly. We’ve learned a new level of difficulty and aren’t looking to find any deeper levels.

While I accept Down syndrome today and acknowledge that God has given us a gift, I would be lying if I said I still feel no grief over it. I regularly tell myself to stop borrowing trouble as I try to figure out a future for my son. His future is in God’s hands and I believe God has a purpose for him. I feel sad when I think about sending him to school where he will learn that he is different. There is a tinge of wistfulness when I see typical babies his age who are ahead of him developmentally. But when I tell Comparison and Fear that they are thieves and liars, grief leaves and joy takes over. I immerse myself in what Redmond is doing today. He’s so cute and cuddly. He’s doing amazing things, learning how to eat and drink on his own, getting stronger every day. He’s very vocal and alert. He adores his siblings and is happier when they’re around. He is a treasure. He isn’t colicky or unhappy, he sleeps great, and he smiles with his whole body.

Although I’m writing about it now, during our daily lives I rarely think about Down syndrome. He’s just my precious boy and we adore one another. I’ve had to focus on it more just because I had such a steep learning curve and I hate to be ignorant. I had to know what I was getting into and how to give him the best life possible. And for that precious mom whose “friend” chastised because she was not happy just to have a baby, I send all my love. Although a woman longing for a baby may not realize it, there are worse things than not having a baby at all. I have waited in the lobby of children’s hospitals and seen the families that go through there. I’ve seen the heartbreak of children who are severely deformed, unable to communicate at all, unable to do anything for themselves. What is Down syndrome in relation to the things I have seen? It’s NOTHING. It’s definitely a gift. But even with the gift, we are allowed to mourn the idea of what will never be.

Special needs parents – we swallow down our pride and grief, we stop concerning ourselves with petty things (will our child will be the best dressed or most athletic?). We push ourselves beyond our limits, going from doctors to specialists to therapists, learning about medical conditions and procedures we never wanted to understand. We try to find time to grocery shop, pick up the toys, and take a shower in between changing bandages or reinserting feeding tubes. We cry a little in private, and then we suck it up and give our children our best smile as we try one more time to get the baby to eat or sit up. We make the most of what we’ve been given, squeeze every ounce of good we can out of it, and try not to think too much about the unknown future. But we certainly grieve and there is nothing about that to apologize for.

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