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Posted on Jan 13, 2018 in Health, Parenting, Wisdom | 0 comments

NICU Post Traumatic Stress is a thing?

NICU Post Traumatic Stress is a thing?

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. 

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

Who Needs Normal?

Who Needs Normal?

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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Posted on Jul 20, 2017 in Devotional, Health, Love, Parenting, Spiritual Life, Wisdom | 14 comments

Peace

Peace

***This post is a continuation of my previous post, Fear, about the birth of my recent child who had severe medical complications and Down Syndrome. To read more about Redmond and our story about him, you can see my public Facebook posts beginning March 1, 2017, and click here.***

 

In the middle of my struggle with fear surrounding Redmond’s birth and the first couple months of his life, there were pockets of peace too. Although fear threatened to swallow me up, I didn’t have panic attacks. I didn’t come undone. I kept putting one foot in front of the other, and I used the tools at my disposal to get to peace.

From the moment I knew I was pregnant with Redmond, a sense of dread and unrest came over me. I spent the first two weeks after that positive pregnancy test praying desperately for God to intervene in whatever was wrong. I gave Him my permission (as if He needed it) to take the baby if there was something terribly wrong. I waited for a miscarriage. I could not shake the sense of dread.

After two weeks of crying out to God, I felt His presence one morning like a soothing balm pour over me. My hands flew to my belly and the words that came to me were, “Life and health, joy and peace.” Peace came with those words. Every time the fear and dread tried to return, I comforted myself with those words.

The morning of our 20-week ultrasound, which was an extra-fancy one for high risk pregnancies, I felt like I was trying to walk in mud. My feet simply wouldn’t go. I was stuck. It was everything I could do to lift them up and move them forward, so afraid of what I might find out that day. After the hour-long ultrasound, we were ushered into the grim-looking doctor’s office. As she launched into a lecture about managing gestational diabetes, I struggled to comprehend what she said.

Finally, I stopped her and asked bluntly, “Is my baby okay?”

“Hmmm?” She looked up from her paper, confused.

“Is. My. Baby. Okay?”

“Oh, your baby is fine. It looks perfectly healthy. Were you worried?” Clueless doctor.

“No Down Syndrome?” I remember that I specifically asked about that. They measure EVERYTHING in this ultrasound. A friend told me how she was warned that her daughter had a shortened nasal bone, which is a soft marker for Down Syndrome, but her baby was born just fine.

The doctor explained to me that they can’t tell for sure without several more tests, and even then they can only tell you something like if there’s a one in four chance that the baby has DS, but she’d be happy to run them if we wanted them. At the point where we were, she felt confident that there was only a slight chance that the baby had DS.

Relieved that the extensive ultrasound had shown no markers for DS or other birth defects, we again declined further testing. We agreed that we would love and accept any child God gave us, and there was little point worrying ourselves to pieces about it before we could know 100%.

I spent the remainder of the pregnancy feeling harassed and annoyed by the management of gestational diabetes and hyperemesis gravidarium (which included extreme motion sickness, making me sick even when I walked). Pregnancy is a real challenge for some of us, but I determined that 9 months of difficulty was worth the lifetime of joy that a child brings.

Towards the end of the pregnancy, I received weekly ultrasounds and non-stress tests. The baby’s heart never did what it was supposed to during the NSTs. It was supposed to go up 15 beats per minute for 15 seconds, but it never did. So I’d get another ultrasound, which would confirm that everything was okay, and we’d go on another week. We also knew that I had high amniotic fluid and the baby had a small amount of water around the kidneys. Both of those can be indicators of DS, but DS babies typically measure small, especially their heads. Redmond topped out in the 98th percentile with an average head size.

There were multiple tests and concerns from the doctors with my previous pregnancies and everything worked out just fine. I kept reminding myself of that, repeating the words, “Life and health, joy and peace“, and doing my best not to worry.

On the morning Redmond was born, I watched a YouTube video by a naturopath about managing anxiety. I’d seen it before and was looking for it to send to a friend. During a time when I should’ve been the most anxious, I was fairly calm. When Rick came back that morning, I firmly told him we had to get to the hospital. I was very concerned about the baby, but I wasn’t freaking out. When the nurse told me that the midwife was coming to break my water, I stayed calm. When they told me that the baby was in distress and I was headed toward a c-section, I handled it well. The words of the doctor replayed in my mind. I had a choice how I would handle the situation. God had promised me “Life and health, joy and peace.”

As I stumbled through those first few days of Redmond’s life, I found it hard to comprehend the things the doctors said. The words they used were terrible, and they definitely brought fear with them, but I also had a sense of peace. My baby would be okay. He didn’t have Down Syndrome. It may look like that, but the test would come back clear. Wouldn’t it?

I had to sort through what was numb denial, what was actually happening, and what might happen in the future. God might have promised me life and health, joy and peace, but at that moment I was facing sickness, fear, and sadness.

At my command, Rick left my side to be with Redmond and calmly talked to him and held his hand so our baby would sense something familiar in all the chaos. When I squeaked out the words “Down Syndrome” and “sickest baby in the NICU” to my sister, barely able to make my mouth form the words, she dropped everything and flew to my side. When the doctors determined that Redmond needed the last-resort heart and lung bypass (ECMO), my mom came to be with us. My dad, who was working and couldn’t take time off, hit his knees. For that first week of my son’s life, my dad fasted and prayed. He barely slept, waking every few hours to get back on his knees and pray some more. He prayed for Redmond, but he also prayed for me and the rest of our family.

When fear tried to take me over, I had a husband like a rock, standing firm and telling me it was all going to be okay, I had a sister and mother helping me laugh and letting me cry. I had a daddy interceding for me. He reminded me that I found strength and felt God’s presence in music. Thanks to his prompting, I turned on the praise music and sang my heart out.

Every morning while I got ready to go to the hospital, I sang. When I went to the pump room for 20 minutes every three hours, I listened to praise music and sang. I sang over my son. I sang praise to God. I couldn’t concentrate to read the Bible much. I barely had words to pray. But I sang and sang and sang. Phrases that stand out to me from that time…

The waves and wind still know His name
It is well with my soul
This mountain that’s in front of me will be thrown into the midst of the sea
Through it all, through it all
My eyes are on You
Through it all, through it all
It is well.

When I listened to the words of the doctors and nurses, when I got my eyes off Jesus, fear snuck in. I’d often find myself staring at objects, trying to figure out if I was crazy for believing that my baby would be okay, if I needed to accept reality and stop living in denial. But I had this peace that he’d make it through. We’d take this precious boy home with us. He wouldn’t need heart surgery. Surely by the time we left, he’d be off oxygen and his feeding tube.

During my pregnancy, “It’s Your breath in our lungs, so we pour out our praise, pour out our praise…” were song lyrics that swept over my heart. I’d think of the baby growing inside me and pray for his lungs. Another song that ministered to my heart said, “Your love is like radiant diamonds, bursting inside us, we cannot contain… God of mercy, sweet love of mine, I have surrendered to Your design. May this offering stretch across the sky, these hallelujahs be multiplied.” I’d think of the cells inside me, dividing and growing (bursting!), only able to be contained for about 9 months. I’d think about my “offering”, submitting to another difficult pregnancy and trying so hard to be gracious and patient through it, and beg God to honor my sacrifice. As I sang those songs, there was no medical evidence that he had any issues at all.

My main problem finding peace during the storm was not questioning God, but questioning myself. Was I sane to believe Redmond would be okay? Was the peace I felt actually shock and denial or a gift from God? Or both?

Much of my fear stemmed from the knowledge that God is running the universe. He has very seldom seemed to take my wants or desires into account as He does, so I braced myself for the gut punch of disappointment, the disbelief that what I had hoped for was gone. My brain played tricks on me. Strong medication taken for pain from surgery affected me. I felt acid rising in my throat, burning me when I tried to pray for God to save Redmond’s life and heal him. Hope and peace were mingled with fear and dread. Surely God would do what was ultimately best for us, but how much was I going to hurt in the process?

I submitted myself to His will and waited to see what He would do. I asked my friends to pray because I couldn’t. I allowed the Holy Spirit to intercede for me with those groans I hear so much about.

Romans 8:26 – 27 says, “Likewise the Spirit also helps in our weaknesses. For we do not know what we should pray for as we ought, but the Spirit Himself makes intercession for us with groanings which cannot be uttered. Now He who searches the hearts knows what the mind of the Spirit is, because He makes intercession for the saints according to the word of God.” (NKJV)

Please save my son, Lord. But not my will but Thine be done.

I kept hearing the words, “He spared not His own son.” I had no guarantee that He would spare mine.

Please hear this point before you close your computer and shut out these horrific thoughts… Please understand me. I knew that if God did not spare my son, He would give me the grace to get through the horrific loss. I had no doubt that if my son didn’t make it out of that place alive, God was indeed running the universe and it was somehow in His perfect will for my life to take Redmond home so early. The thought horrified me, but even in the worst moments, I knew that God would walk me through it all. I was not alone.

Knowing so well that God owes me nothing, that any loss I face is nothing compared with the trauma of His own son’s death, I relish even more, savor, and bask in the beautiful YES that He gave me.

My precious baby boy, a cuddly bundle of smiles and love, sleeps soundly in my arms. This baby who came so close to death, who should be terribly delayed and have all kinds of problems as a result of the very medical interventions that were used to save his life, appears to be doing just fine. He coos and “talks”, sings with me. He actively rolls from back to front and back again, chewing on his thumb and reaching for toys. He laughs out loud, startling himself with the sound. He’s growing like a weed, wearing nine-month sleepers at 4.5 months old. He sighs deeply when he sleeps, burying his face in my neck, and tries yet again to pull the oxygen tube out of his nose.

He’s still on a feeding tube, still needs supplemental oxygen, which I wish away many times every day. But after all he’s been through, what are these little annoyances? I adjust my attitude to thanking God for these tools that I have to keep Redmond healthy, thriving, and growing. He should’ve had hearing loss, but he hears perfectly. He should’ve needed heart surgery, but the holes in his heart are closing. Pulmonary hypertension is GONE. He’s active, alert, and cheerful. He sleeps through the night like a little champ.

The chromosome test for Down Syndrome came back positive, and it took us a while to deal with that. He has an extra chromosome, which was present at conception and not a result of the complications of pregnancy or the medical treatment he needed early on. With it comes low muscle tone and the possibility of many other physical and intellectual handicaps. I have prayed over this child though, emboldened by God’s miracles in his life so far. I pray that he has the mind of Christ, that his eyes see truth, and so on. I pray that he is ABLE, not disabled.

A few days ago, I whispered to God during a rare moment of quiet, “And please God, would you heal him from Down Syndrome?” Very swiftly and firmly, I heard a voice whisper back, “It’s a gift.”

My heart lurched.

Many parents of children with DS report that they feel very lucky to have a child with DS, and Rick and I have shaken our heads in confusion. Why are we lucky to have a child with physical and intellectual impairments? Is low muscle tone and a congenital heart defect a gift?

But this God I serve, He works in mysterious ways. What is mystery to us is great glory to Him. And so, although I cannot claim to understand at this point, I have decided to embrace this gift in the same way I embrace the God I do not understand.

My child, the one with the extra chromosome I so greatly feared, is Life and Health, Joy and Peace to me. He is Life and Health, Joy and Peace to the entire world. The fact that he has a chromosomal abnormality is not a burden, but a gift.

I will still pray for him to be completely healthy and whole, to have perfect vision and a strong body. I will still pray for him to be able to walk and talk with ease, to be able to comprehend all that he needs to understand in this world. This child, and his amazing siblings who have embraced him with all their hearts, will drive me to my knees more than anything else ever has. I will pray for all three of them with all my heart. But Down Syndrome is off my prayer list. I write this with a thankful heart, full of peace: It is our mysterious gift.

Photo credit: the beautiful, blue, professional ones are all by ErikaMarie Photography. The rest are me.

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Posted on Jun 20, 2017 in Devotional, Fertility, Health, Parenting, Spiritual Life | 7 comments

FEAR

FEAR

Although there are many things I don’t recall, fear is one thing I remember well from the first few days of Redmond’s life.

Unplanned c-section because the baby was in distress. Baby taken from me without so much as a glance. Phrases like “very sick”, “breathing problems”, “Down Syndrome”, and “NICU” scatter through my mind.

Day two of his life, words like pulmonary hypertension and oxygen levels suddenly became things I needed to understand. Lungs and heart that weren’t working right. Ventilators, nitrate, blood sugar, monitors, and nurses and doctors and help. Lots and lots of help.

“Sickest baby in the NICU.”

I was so numb and confused, in shock, the words barely phased me. But they got the attention of the nurses and doctors who cared for me after my c-section. Suddenly, less than 24 hours after surgery, I was showered, dressed, given a fist full of prescriptions, and driven to the NICU an hour away to sit with my baby, hold his hand. The baby’s doctor stared at me in shock. “Why are you here. In JEANS?” I wasn’t sure where else I was supposed to be or what I should’ve been wearing. I wasn’t sure what I was supposed to do. He gave me a lecture about how I needed to take care of myself if I was going to take care of my baby. I was to eat regular meals, sleep as much as I could, and not push myself too hard. I was to remember that I’d just had major surgery and take it easy.

I heard the doctor and followed his orders. Through blind tears, I allowed myself to be wheeled around in a wheelchair, driven back and forth from the hospital to the Ronald McDonald House, and told when to take the medications I needed for pain. I tried to sleep, but had to wake up to pump every few hours.  Then I’d wake up in a panic every morning, wondering what was happening with my baby and how I could just leave him in the hands of strangers.

The numb confusion started to lift when the phone rang early on the morning of his third day of life. We’d been told the night before that he’d made it for the first 36 hours, so he was not likely to need to be transferred for the one kind of care our hospital could not offer. But when the phone rang, we learned he was to be transported to a bigger hospital, about 40 miles away, to have the chance to go on a heart and lung bypass machine. He might not need it, but they didn’t want to wait any longer to chance it.

Redmond was very sick. He needed more help than what he could get at the hospital he was in. Suddenly, I was very aware that this was serious. My baby might actually die. I jerked into action, signing papers and asking questions and trying to focus on what each person said to me.

Emotions flooded over me. Guilt. So much guilt. I was 41 years old and the likelihood of Down Syndrome increases exponentially with the age of the mother. I had gestational diabetes that wasn’t well-controlled, in spite of my efforts. He had complications from that. If I had been in better shape. If I had tried harder. If I had listened to my gut and ignored the strange rules from the doctors and nutritionists to eat carbohydrates, he wouldn’t be so sick. Shame. I was so ashamed. Memories of studies I’d read stating that the age of the father is now known to affect the baby’s health as well flooded over me. My husband was 52.

Illogical, panicked thoughts woke me up with a jerk every time I fell asleep. I was like King David of the Bible. God took the son of King David and Bathsheba. David fasted and prayed for the child’s life, but when the baby died, he got up, washed, and ate. In my muddled state, I forgot that David was punished by God for serious sin – including murder and adultery. My son was not the result of any sin, but I had irrational thoughts that he would die and I’d have to get up, wash my face, and get on with life. (I discovered that one of the medications I was taking for pain sometimes caused people to have terrible dreams and jerk awake in a state of panic.)

I flew down to the baby’s room at the crack of dawn, walking rather than taking the prescribed wheelchair (because my husband wasn’t moving fast enough for my panicked mind), nearly hyperventilating with fear. I couldn’t breathe. I just knew I’d arrive in his room to find him gone, hospital workers waiting to tell me in person, rather than call and disturb the last peace we’d ever know.

But there he was, laying quietly, an enormous machine run by four people beeping and humming, keeping him alive. ALIVE.

I dissolved into tears, breathing for what felt like the first time in minutes, barely able to stand with the relief that flooded me. As they stared at me, I tried to explain. But the words wouldn’t come. Instead, I stumbled to his bedside, took his limp and swollen hand, and poured out the words that God placed in my heart in that moment. God had felt so far away from me, but in that moment His presence rushed in and I spoke truth.

“Redmond Samuel Wyse, you are a gift from God. Every moment of your precious life is a gift. And whether I have you for six days, six months, six years, or a lifetime, I will be grateful for every single moment. You are an answer to my prayers, and I cherish every moment I’ve had with you – every moment of that horrible pregnancy, and every fear-filled, terrible moment since you were born. You are a gift and I’m grateful for you.”

And with those words that I hadn’t felt just moments before, things changed. Love rushed in, replacing numbness and thoughts that maybe it would be better if he didn’t make it. Love replaced efforts I’d been unwittingly making to protect my heart from the pain of losing him. Love reminded me that in Christ, every life is precious and worthwhile, even the lives of babies with Down Syndrome, congenital heart defects, and pulmonary hypertension. Love rushed in, reminding me that God is greater than any fear, any doubt, and any lie from Satan.

That was very early on a Sunday morning. It would be six very long days before he’d be taken off the heart and lung bypass machine. It would be six scary days of praying that he wouldn’t have a bleeding event. It would be six days of feeling helpless, eating hospital food that was brought to me, pumping to provide milk for him when he was able to eat, sitting on bright orange chairs in front of large windows that overlooked a massive cemetery, riding in a wheelchair back and forth to the Ronald McDonald House, jumping every time the phone rang. But on the sixth day, he was taken off the machine and his heart and lungs functioned well enough to stay off it.

The next day, when he was ten days old, I was able to hold him for the first time. I cried the ugly cry, tears and sobs and gratitude all mixed into a snotty mess. He was covered in tubes, wires, cords, and contraptions. It took three people to pick him up to place him in my lap. His ventilator was pinned to my shirt. I couldn’t get close enough to kiss him until they put him back, at which time the nurse held his little head close to mine for a quick kiss. But I was holding him. I sang him songs and marveled at his tiny body, then fell asleep in a blissfully rare moment of relaxation and joy.

For a week after that, I was able to hold him once a day. One time, Rick held him, although he grumbled quite a bit about it, worried he would pull on one of the tubes going in and out of him, worried he might break the fragile boy.

When he was four days old, the day they put him on the bypass machine, I called my in-laws and asked them to bring the older kids up to meet their baby brother. I was seized with fear that he would die before they got to meet him. It suddenly became a terrible fear. How could I explain to them that the baby died if they never got to see him alive?

And so they came, arriving just moments after Redmond’s surgery to have giant tubes inserted into his neck. The tubes allowed blood to be pumped out of his heart, artificially oxygenated by the machine, then pumped back into his heart. It was a terrible time for a visit, straining the nerves of the nurses and specialists, but still very important to me.

The kids were held up by their daddy, allowed to touch the baby’s hand, and then taken out quickly. We went to a play area in the hospital where the kids could get out some energy. I sat in my wheelchair and cried, the numbness worn off, so very sad that my baby was fighting for his life in another part of the hospital. Sad that I couldn’t run and play with my older kids while I had them with me. Sad that I had ruined our perfect, lovely life, free from hardship and pain.

A few days after the bypass machines rolled out of his room, the fear in my heart began to let loose a bit. When they took him off the ventilator, the fear let go some more. Every step along the way, fear has had to go, little by little.

Today, at home with weeks having passed without any need for hospitalization, fear only pops up from time to time. It’s still hanging around, but it isn’t hovering, dark and sinister, taking up all the space in my mind.

“God hasn’t given me a spirit of fear.” It’s the truth. Fear isn’t from God. But it’s very real when a baby’s life hangs by a thread. God gave me ways to manage fear and get through it, but it was very real and present.

Those early days in the hospital, I kept looking around for someone to come and offer me a temporary fix for the fear and sadness. Where’s the wine? Where’s the Xanax? Where’s the massage therapist to work the stress out of my muscles? Where’s the counselor to help me with these crazy thoughts?

The people that kept showing up, over and over again, were my church’s pastors. They prayed. They sat and listened. My sister and mom helped me remember that in the worst of times, we laugh to get through it. We find the funny, even through our tears. The nurses and doctors didn’t offer me a temporary fix. I didn’t take one nerve pill, didn’t drink one drop of alcohol. I slept. I ate. I leaned hard on my husband. I sang praise songs. A few days before we left the hospital, I got a massage. A social worker showed up one day and helped me work through some of my guilt and shame. Then I never saw her again.

I don’t know how to wrap up this post. I could write and write and write. I’m not sure I’d ever run out of words. In fact, I have written and written. Thousands of words. I try to edit them down and just write more. In the coming months, I’ll try to post them. I’ll try to share a bit of what this has been like. And you’ll have to forgive the repeats and the stumbles and the grammatical errors. Or point them out to me so I can fix them later.

All I know to say in closing is that God has not given me a spirit of fear, but fear snuck in anyway. What God did was help me through my fear. What God continues to do today is help me through the fear. Gratitude is slowly taking over as I cuddle and nurture the sweet, sweet baby boy He placed in my arms. My heart is at peace.

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Posted on Mar 25, 2017 in Fertility, Health, Parenting | 4 comments

It’s Another Boy!

It’s Another Boy!

I’m so pleased to introduce you to our second son, Redmond Samuel Wyse. He has had us on quite a roller coaster ride for these last 23 days, some of which you may already know from my public Facebook posts. He was born on Wednesday, March 1st, 2017, at 4:21 p.m. in our local hospital. He weighed 8 pounds, 12 ounces, and was 20 1/2″ long. He was born just before 38 weeks, via an unplanned c-section.

At around 37 weeks into my pregnancy, Redmond shifted from a very active baby to not moving much at all. The midwife and OB had been supervising my pregnancy closely because of gestational diabetes. We had some warnings that his heart might not be exactly as it should be, but repeated ultrasounds showed no reason for concern.  Redmond moved less and less that week, which I attributed to his growing size and getting squished in there. But Wednesday morning he stopped moving all together. I tried everything to get him to move, then decided we needed to get to the hospital right away. I began to panic, afraid I had waited too long.

As soon as we arrived at the hospital, the nurse pulled out the doppler and we heard his heart beating. I was so relieved. Although his heart was beating, they soon realized he was in distress and a c-section needed to happen right away. I was able to remain calm until he was out, but then I knew something was very wrong. They didn’t let me see him and suddenly my world turned upside down. The very wise anesthesiologist gave me something for anxiety. I sent Rick to be with Redmond while they worked on him and I slept in the recovery room.

That night, Redmond was taken to a larger hospital with a Neonatal Intensive Care Unit (NICU). He’d been put on a ventilator and I was only able to see him inside of a closed travel crib for a few moments. Too medicated to fully grasp what was happening, I went back to sleep. I was aware that there was a problem, but felt completely numb. It’s strange to write those words, but I believe that was actually the very thing I needed at that time. How could I have handled the weight of what was happening to my son, totally unable to be with him or do anything to help?

The next day we were told that Redmond was the sickest baby in the NICU and they were not sure what to do with him. I was released from the hospital less than 24 hours after my c-section, driven home by a wonderful friend who is also a nurse at the hospital, and was soon on my way to see my baby about an hour away. My sister dropped everything that day, got on a plane from the Carolinas, and actually beat me to the NICU. I am so grateful for her and all she did over the next several days to keep me calm and focused, asking intelligent questions when I could think of nothing, and buying a large quantity of snacks (and supplies)!

A few days later, Redmond was transferred to a larger hospital about 80 miles from our home. The hospital he’d been in was excellent, but had done everything they could do for him. They felt like a treatment called ECMO (for more info, watch a video about it here: http://www.mottchildren.org/conditions-treatments/ecmo) was what he might need. Redmond had several heart issues and his lungs weren’t working like they were supposed to work. ECMO, a heart/lung bypass, would allow them to rest and have some time to start working. The photo below is what his room looked like with the ECMO machine, ventilator, and other equipment he needed.

When he was just 3 days old, he was put on ECMO. We had our older children, Eliana and Charlie, come up to the hospital with their grandparents to meet him. We weren’t sure if it was a good idea to let them see him with so many things attached to him, but decided they needed to see their brother alive. It was a terrible thing to have to decide, but they handled it very well. We allowed them to briefly see and touch him, then we took them into a play area in the hospital. While they ran and played, I sat in a wheelchair and cried. I cried because this short period of time was all I had with them and I couldn’t even play with them (c-section recovery). I cried because my baby was in another room fighting for his life. I cried because I was hormonal and exhausted.

Redmond was on ECMO for six days. They were terrible days, full of ups and downs, alarms going off constantly, no fewer than 2 people in his room watching him at all times. He had two large tubes in his neck and was medically paralyzed. His chest didn’t rise and fall, he was puffy and discolored, and he looked like a lifeless doll. Often there were 4 people watching him – 2 nurses and 2 ECMO specialists. There was barely space in his room for us. We often walked out of the room to sit on nearby chairs and get a break from the sound of the alarms.

On March 7, when he was just 6 days old, we were startled by an early morning phone call from the nurse practitioner. Overnight, Redmond had developed a tension pneumothorax, or an air pocket outside of his lung. It was causing his heart and other organs to be pushed off to the side, which interfered with ECMO. The standard treatment is a simple chest tube, but that was extremely risky for him because he was on blood thinners. A chest tube brought with it the risk of internal and external bleeding. Without the chest tube, ECMO couldn’t continue successfully. That kind of uncontrollable bleeding didn’t bode well for him either.

As the medical team discussed how to handle it, I prayed with all my might. “Please God, give them wisdom, creativity, and knowledge. Help them to find a way where there seems to be no way.” God chose to speak through a pediatric surgeon. He said, “When we don’t know what to do, sometimes it’s best just to wait.” They all agreed to give Redmond 6 hours, repeat the chest x-ray, then do the chest tube if necessary. They made a plan for the chest tube and continued on their way. I called on everyone I knew to pray for that 2:00 p.m. deadline. Please, God, give us a miracle.

At 2:00 p.m., the chest x-ray was repeated. Our pastors had come up to be with us while we waited for the news. As I sat on the edge of a bright orange chair outside his room, the nurse practitioner walked up and told me the news. “The pneumothorax is gone. His heart and everything else have lined back up correctly. No chest tube is needed.”

I almost fell off that chair with gratitude. Sobs of relief came rushing out of me. God had answered our prayers with a miracle. The nurse practitioner, who has never mentioned God to me, agreed that it was a miracle. She had never seen anything like it in 21 years of working in the NICU. That day Redmond turned a corner. Before that day, ECMO specialists, nurses, and doctors were constantly confounded about him. He was difficult and touchy. Anytime they needed to move him for any reason, alarms went off. After that day, the reports changed. He was improving. He was improving more. He was improving faster than they expected. Blood cultures, labs, and other tests looking for other problems were coming back negative.

When he was 9 days old, he was able to come off ECMO and tolerated it well. I held him for the first time when he was 10 days old. He had so many things attached to him that it took 2 nurses and a respiratory therapist to put him in my lap. When he was 15 days old, he was able to get the ventilator out. When he was 16 days old, I heard the amazing sound of his cry for the first time. When he was 22 days old, he was completely weaned off IV medicines and his PICC line came out, he got his Foley catheter out, and I was able to pick him up by myself to hold him. When he was 23 days old, he was switched from a c-pap breathing ram (forced air) to nasal cannulas (supplemental oxygen), which is one step away from breathing on his own.

We are looking forward to how he reaches the next milestones – coming completely off of oxygen and learning to drink from a bottle.

We have seen so many miracles along the way. I’ve made my Facebook posts about him all public, so I won’t rehash every one of them here. But we stand in awe of God and the way He has answered our prayers.

Rick and I have been mostly separated from Eliana and Charlie since the day Redmond was born. We’ve been home a few times, very briefly, and are extremely grateful for the ability we have to stay with our baby. Rick’s parents and our amazing babysitter have provided so much love, support, and care for them that sometimes we wonder if they even miss us. They’ve been able to keep to their regular schedule and come up to visit us several times. We hate to be away from them and miss them terribly, but are so thankful for the excellent support we have at home.

We’ve been staying at The Ronald McDonald House, which has been a tremendous blessing. We will be lifelong supporters of their charity because of way they’ve helped us. Not only do they provide housing for families whose children are in the hospital far from home, but there’s typically a meal provided every day, as well as countless other grace-filled gestures.

Redmond has some things that will continue to challenge us as he grows. We’ve been told he has a ventricular septal defect (VSD), or a hole between the lower chambers of his heart. It’s possible that it could close on it’s own, be something he’s able to live with, or need to be repaired surgically in the future. We are praying earnestly for God to close that hole without the need for surgery. The hole is a complication of Down Syndrome, or Trisomy 21. This diagnosis came as a surprise to us, as none of the tests we had done before he was born suggested it. It took a while for the chromosome test to be completed, but we were told it was a possibility within an hour of his birth.

Redmond (wise protector) Samuel (God has heard) Wyse will not be defined by this diagnosis. Named in honor of his paternal grandfather, Samuel Wenger, his name means “God has heard and blessed us with a wise protector.” We chose this name before we knew anything about him and believe God has a purpose and a mission for his life. He will be a mighty man of God, given every opportunity to succeed, and supported through every possible path he may take. We have prayed for him since before he was born, asking God to give us another child, and have believed that he  would bring “life and health, joy and peace.” He is our great blessing and we praise God for answering our prayers. He has already exceeded the expectations of our doctors, and we look forward to seeing all the ways he exceeds the expectations of the rest of the world.

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