Life…as we know it.

I have tried on several occasions to write this post without success. However, just the other day, a dear friend suggested I do just this exact thing. She had no idea when she first suggested it that I had tried and failed several times before to share this information, but at her request, I am attempting this feat yet again.

I don’t know why I’ve been so unsuccessful in the past. Perhaps it felt selfish or self-serving. Perhaps I was afraid it would seem I was asking for pity – which I’m not. What I am asking for is understanding. What I am offering is a clearer picture perhaps than what I’ve given before.

Here’s this friend is understanding. This friend has tried perhaps more than any person outside of my immediate family to understand our situation. We talk often and she asks questions – lots of questions! She has and does try as much as is possible for someone NOT living in our home to understand everything, so when I said something in passing about something I was unable to do without another adult present, this friend was shocked that it had never occurred to her. It was a light bulb moment of “Whoa! I never thought about that.” She then told me that if she, who tries extremely hard to understand, didn’t realize this, then surely most other people really had no clue what our life is really like. Therefore, she thought it necessary that I inform the general public about life….as we know it.



So here goes.

Most of you know that Hope needs lots of care, but you might not know what that entails. So here, in the best way I know to explain it, is a rundown of the whys, whats and hows of life with Hope.

  • She cannot be left with anyone who is NOT trained in infant CPR with a trach and how to change a trach. Right now, this means my husband or I, a trained nurse, or if necessary, my mother-in-law (who has 39 years experience in Pediatrics, but even she has not had much experience dealing with trachs).
  • She has an oxygen concentrator, a compressor/humidifier, a suction machine, a pulse oximeter, and a feeding pump.
  • She needs trach care at least once a day. It requires 2 people.
  • She has breathing treatments and other meds twice a day.
  • Her clothes and bed linens have to be changed several times a day because she creates so much saliva/secretions.
  • Her feeding pump is turned on and off 12 times in a day and refilled multiple times. The bag is changed daily. Her G-tube is supposed to be rinsed in between every feeding.
  • She sleeps in our room with all of her equipment. Thankfully, at around 6 or 7 months we figured out that the oxygen tube would reach from another room, so we could put it in her room and no longer have our room 15 degrees hotter than the rest of the house. However, we still have her bright glowing Pulse Ox that alarms rather loudly at all hours, her feeding pump that has to be turned on and off at different time, her humidity which is somewhat loud, and her suction machine which is really loud.
  • When we aren’t sleeping, she stays in the dining room – crib and all. We don’t hide her off in a bedroom somewhere. She stays in those 2 places. She can’t be carried around because she’s hooked up to the 3 things mentioned before, plus the suction which must be close by.
  • Want to watch tv or a movie? Get used to reading subtitles because you can’t hear much unless you are on the other side of the room (which I rarely am).
  • I cannot take a shower unless there is another adult in the house because that is enough time for her to plug off and suffocate.
  • I cannot give my kids a bath unless there is another adult in the house because I need to be able to get to Hope if she needs me, yet I can’t leave my other kids in the tub.
  • I don’t feel comfortable doing the dishes unless another adult is in the house. I can’t be elbow deep in dirty dishes when she needs her trach suctioned (which she does frequently).
  • It’s difficult for me to cook at times, for the same reason. I can’t be covered in raw chicken if her trach needs to be suctioned.
  • You might have noticed that I’m online MORE when we don’t have a nurse. That’s because she needs suctioning so frequently, especially in the morning, that’s it’s easiest for me to sit close by. Yet, it’s difficult to hold her without someone else here. Why? Well…
  • That’s brings me to the next problem. My other children. If you have small children you know – the minute you get tied up or busy, the kids will do something crazy, so I can’t just sit and hold her when no one else is here. If I do, the screaming, hitting, biting, wall-coloring, pants wetting, etc. ensues. Sadly, if no one else is here, she spends most of the day in the bed.
  • Along with all of that, she has an hour of in-home therapy 5 days a week, plus a visit from her EI Coordinator every other week. Not to mention, all her appointments.
  • When we travel to said appointments, most of her equipment or a portable version of it goes with us, in addition to her diaper bag, “go” bag (has all emergency items – ambu bag, extra trach, etc.), stroller and carrier.
  • She can’t really go anywhere without 2 adults – 1 to drive and one to ride in back in case she needs to be suctioned. If I have to, I can take her right up the road to the pediatricians, but usually can’t make it without stopping in the neighborhood to suction her.
  • Then there’s the phone calls. Oh, the list of phone calls. Feeding supplies, medical equipment, appointments, Medicaid, medical bills, on and on and on. There is ALWAYS a phone call that needs to be made.
  • And that’s just the stuff I can think of…

Add to all of this that my husband works 50+ hours a week.

When I say, “I don’t have time,” I hope you understand that it’s not just a platitude.

When I say I’m tired…words cannot even express.

When I say I’m forgetful…well, just forgive me, please.

When I am stressed about not having a nurse – I hope you can see why.

But when I say that I don’t want to be pitied, I don’t.

Our life is different. Different than it was. Different than yours. Different. Forever different.

And it’s hard. Oh yes, it is hard.


It’s blessed. Very blessed…and it won’t always be this hard.


Weeping may last through the night, but joy comes with the morning. ~ Psalm 30:5

Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing. ~ James 1:2-4



the much awaited, much anticipated, oh-so-wonderful update

The more I put this off…the more I put this off. The longer I take, the more there is that happens which means the more there is to write AND therefore, the more I put it off. You get the idea. Hence, it is time to suck it up, take the time and write “the much awaited, much anticipated, oh-so-wonderful update.”

Hope in a hat

Now, if I can just figure out where to begin.

The last time I updated was in December, and I can’t believe how much has happened and how much Hope has progressed in such a short time. The easiest way to update is to give a rundown of all that she is doing and what has changed.

Can you believe this is the same baby??

Can you believe this is the same baby??

The biggest news came AFTER I first started trying to write this post. I spoke with her neurosurgeon on the phone about the results of an MRI he had done in January. He said that not only is her shunt working fine, but that the scan of her neck showed that she does NOT have the Chiari II malformation! (Read previous post regarding that diagnosis here). If you remember, she almost had a scary decompression surgery back in July to correct it….something she doesn’t have! God is so good!

Hope just had her 9 month check-up (a little late) and weighed in at 16 lbs 2 oz! Her height was 25.5 inches. She is now in the 3rd percentile for both, unless they adjust her age for prematurity. In which case, she is in the 10th percentile for weight! She is getting quite chunky. Adorably chunky! She has now moved totally to a crib because she’s gotten far to big and long for a bassinet – not to mention how much she moves.

We saw the pulmonologist for the first time, and Hope is now taking an inhaled steroid twice a day to improve and heal the lung damage done by repeated aspiration and multiple bouts with pneumonia and bronchitis. Incidentally, she hasn’t had a recurrence of either since starting the steroids. We are also currently weaning her off of oxygen during the day.

The pulmonologist referred us to a cardiologist – the only specialist we hadn’t seen – just to be sure there were not problems there. They did an EKG and an ultrasound, and she got a clean report from them. It’s wonderful to have one specialist we don’t have to revisit.

Hope is doing wonderful in all her therapies. She is reaching, shaking rattles, manipulating toys, and banging blocks. Keep in mind that it takes her more effort and concentration than the average child, but she is doing it. She can now shake her head yes and no – which she find quite amusing to tease us with. Her physical therapist is working on things like kneeling and getting her on all fours. She loves to play, especially with faces and hair.

Working on kneeling

Working on kneeling

Touching my toes!

Touching my toes!

This all fours thing is tough

This all fours thing is tough

The only negative thing about therapy is that her speech therapist had to cease many oral exercises after the last swallow study. She cannot currently do anything that might stimulate her to produce more saliva to aspirate. However, Hope has begun to vocalize sporadically. She squeaks every once in a while to get attention. This is a big deal as it requires her to push air past her airway to make a vocal sound, so she’s learning.

All in all, Hope is doing amazing! If anyone had told me 8 months ago, we’d be where we are now, I don’t know if I would have believed it. She is a constant joy to everyone – so full of smiles and laughs. You can’t help but love her.

While I’m at it. The rest of the family is doing great. The hubs got promoted in November (can’t remember if I shared that) which has been quite tiring, but a financial blessing.

My oldest will be 4 at the end of this month. FOUR! Where did the time go? 3 going on 14 and smart as a whip – with a mouth to go with it! I’m about to start teaching her to read. She’s more than ready. This kid is going to be a world-changer. She could probably school some adults on the Bible. Smart, sassy and sensitive. That’s my Grace.


Proud big sister

It has also become more and more evident in the last months that my middle child (oh, poor middle child) is a true strong-willed child. Time to read up on some Dr. Dobson again. I don’t know what to do with her. She’s 2, but has no idea she’s not 4 or 5 – as commented on by a random mom at Monkey Joe’s. No ma’am. She has no idea she’s not 5. She’s fearless…which is why it makes it so darn hard to put the fear of God in her. Lol. Oh well, I know one day I’ll be glad she’s so strong-willed. Just when it’s against others and not me. I’ll tell you one thing about her though, she’s a hoot. I said it when she was a baby and couldn’t stop smiling, and I was right. She is going to be She is the clown. Joy is such a joy. Strong-willed, but a joy.

No clue she isn't grown

No clue she isn’t grown

We recently took Joy’s paci away. Don’t judge me. She only still had it when sleeping, and I’ve been a little slack on starting and stopping things with her during this season of our lives. I’ll admit that sometimes I do whatever makes my life easiest, so long as it’s not truly detrimental in the long run. I’ve only just started trying to potty train her, but even that I can’t seem to do full-on. After spending 2 years trying to get it to work with Grace, I just don’t have the drive to try so hard this time, and really, who can blame me for not having the time or sanity to let her run around half-naked and sit in the bathroom with her every 30 minutes? She’ll get it. After everything I tried with her sister, it just had to click for her. I’m hoping it will click for Joy.

As for myself, I have committed to be a contributing writer for a well-established homeschool blog that is becoming a group blog. I’m really excited about this opportunity to work with a great group of writers, learn more about blogging, possibly learning how to improve my own blog, and maybe even supplement our income a bit. I will definitely direct you over there once the revamped blog is launched. It should be in the beginning of April. I have already written my first draft for my first post, and you can be sure I’ll be linking up my posts here. Look for more info to follow.

Before I wrap it up, I have to say, it’s been quite a lovely weekend. My husband was off of work per doctor’s orders because he has the flu and bronchitis. However, he didn’t feel as awful as it sounds. It was, however, his first days off in 3 weeks. These last 2 days have felt more “normal” than any day in quite a long time. We had no nursing help and no therapies (since it’s the weekend). It was just us. Just the 5 of us. We watched movies, at pizza, popcorn and chicken wings, laid around in our jammies, read books. Even with me doing everything AND taking care of Hope’s needs, it felt the closest to “normal” life as I can remember in a very long time. It was nice.

Whew. Update done. That wasn’t as hard as I thought. I mean, it’s 12:30 am, but it wasn’t so hard. Why did I put it off for so long? Sorry if it seems somewhat haphazard and disjointed. It’s late, I’m tired, and people are asking for an update.

Wonder how long it will take to write the next one?

Unspeakable Joy

I find it hard to believe that my little one is about to have teeth. Her bottom 2 have been cutting through for a few days.

I also find it hard to believe that she will be 8 months old in a matter of days. It will be 1 year before I know it.

Less than 8 months ago, I worried I wouldn’t have the same feelings for her as I do for my other children because we didn’t have that “oh-so-important” bonding time right after her birth…or for several months for that matter.

I could not have been more wrong.

The way I love her is something I cannot even articulate. The smile that lights up her face every time I pick her up fills me with such joy and often leaves a lump in my throat. I’m so thankful God allowed me to experience the heartache of the last year, so I could enjoy the honor of being mommy to this precious little girl.

I cannot imagine life without our little miracle.

Nor can imagine life without any of my children.

Thank you Lord for the privilege.

A Letter (and a somewhat lengthy update)

I just read this blog post: Letter to the Others

I cannot begin to tell you how much this rings true.

Granted, my child is only 5.5 months old, and I haven’t yet had to deal with the rude comments or insensitive words of strangers….or even the kind words much for that matter. Nevertheless, this is what my “Letter to the Others” would say.

You are generally silent when you see our daughter.

But I see the look. You see a stroller and say “Oh, a baby!”, then you see the tubes and various things you don’t even know how to begin to name and immediately look away for fear of offending me.

If we happen to make eye contact, you give me that half-smile that says, “Aw. I’m sorry.”

To which I want to reply, “Don’t be! I’m not!”

The thing is, you want to ask questions. I know you do. I can see it on your face…..and I WANT you to ask!

Not so I can give you a piece of my mind.

No. I want you to ask, so I can tell you about this amazing little miracle baby.

I want to explain everything to you.

I want to tell you what her problems are and why she has them.

I want to tell you why she can’t breath like other people. Why she can’t eat. Why she looks like her own personal bubble machine. What that seriously loud machine is that we have to crank up in the middle of the silent waiting room every 2 minutes. I want to tell you!

Most of all, I want to tell you that it’s all temporary. That she will most likely outgrow all of this and be okay. That mentally she is just fine.

BUT…I also want you to know about that other thing. The thing you can’t see. The thing that will always be there.

The Spina Bifida.

When all these breathing, feeding, swallowing problems are outgrown, overcome and gone. When the oxygen tanks, suction machines and feeding pumps are all gone. There’s still that.

She may need leg braces. She may walk differently. It may take her longer to learn to do some things.

She may never be someone’s picture of “normal.”

But she’ll be a walking miracle because of all the stuff that came before.

And I know one day there is going to be some kid on a playground or in a store who wants to know, “What’s ‘wrong‘ with that little girl? Why does she walk funny? What are those things on her legs?” And there will probably even be some kid who calls her “retarded” because that’s just how kids are….and that’s okay.

Even then, I’d like to think that “My [daughter] is here to teach us all about the beauty of our differences, to stretch us beyond our comfort zones into each others’ lives,”…and maybe even to give us another glimpse of the complex, miraculous and unique workings of The Creator.


“For you created my inmost being;
    you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.” ~ Psalm 139:13-16


I know it has been quite some time since I have given an update on Hope, so I thought I should at least tag one on here at the end.

We are ALL doing wonderful. Hope is developing and improving by leaps and bounds!

She is up to a whopping 8 lbs 12 oz 9 lbs .5oz!!! Almost twice her birth weight and finally bigger than her 2 sisters birth weights (both over 8 lbs!).

It seems that she is teething. She sucks and chews on her hands every waking moment now. It will be interesting to see this little baby with teeth.

She has been trying to roll over on her tummy. We’ve actually rearranged the rooms again because she can’t continue to sleep in the bassinet when she starts rolling over. She’s already spending some time in her crib during the day now (which now resides in the dining room). She seems to enjoy the extra space to move…and being able to see the room. We haven’t started moving her into anything else for night sleeping. Though I have already set up the Pack N Play in our room for her.

Smiles are pretty frequently now. She even looked like she was laughing once, and 2 nurse and I are almost certain we have each heard her squeak a couple times, so she might be getting vocal soon. She has figured out how to make noises, like raspberries on her paci. I’m pretty sure she enjoys it now that she’s figured out a way to make a noise she can hear. It’s really quite adorable.

Hope is very aware of her surroundings. She’s alert and follows voices, movement and such quite well. Her nurses have assured me on several occasions that there doesn’t seem to be anything wrong with her brain. She knows exactly what’s going on. Her body just needs to catch up…which we are working on.

We are increasing her feeding rates by 2 mL every 10 days. Her chin, or shall I say chins, are getting so chunky, it’s beginning to make trach care pretty difficult (her active little arms aren’t helping either). She’s gained enough weight that her shunt (which runs down on top of her ribs into her abdomen) is almost no longer visible. The difference in her legs (one is muscularly weaker than the other) look almost no different now either. She’s finally made into size 0-3 mos clothes!

Her new leg brace was delivered last Friday, and she seems to be handling it fine. It’s purple by the way, and kind of cute. When she gets big enough for the patterns to actually show up, maybe I’ll pick something sassy like leopard 🙂

All of her therapists are excited with the progress she is making. She has therapy at home every weekday.

We have Physical Therapy twice a week. In PT, she is learning to and doing well with holding her head up, building trunk (stomach and back) strength with supported sitting, reaching, supporting her weight on her arms while sitting, turning her head, rolling from one side to the other, pushing with her legs and strengthening her weak ankles (particularly the right one). Her physical therapist is a sweetheart and shares contagious excitement with every improvement Hope makes. I love that she sings while they do her exercises.

Speech therapy is also twice a week. I know everyone wonders what in the world a speech therapist does with a 5 month old. The ST works on everything that is oral. Remember, Hope has a trach and a feeding tube, so she doesn’t breathe or eat through her mouth. Our ST is wonderful and is doing things like getting her used to different flavors and textures in her mouth, working her oral muscles by stimulating her to swallow and holding onto her pacifier – things that will be necessary in the future for her to eat, breathe and/or speak. She tells us that Hope is handling her secretions much better already, and her swallowing is improving. She has even agreed that it is worthwhile to request another swallow study to see if she can handle any fluids without aspirating, so that we could wean her back to bottle feeding! I’ll be making that request next week at the NICU clinic when they plan to discuss having a g-tube placed (through her stomach).

Occupational therapy is once a week. We don’t see her as much, so there hasn’t been as much opportunity to get to know her, but she’s fabulous too. She works on reaching, grasping, and releasing. Hope tends to hold her thumbs in tight, so we work on that. At this age, she does many things that are similar to PT (in fact, there are some things like tracking with her eyes that cross-over all 3 therapies), but there will be more differences as she gets older.

We visited the orthopedist today. He thinks she might need a tendon snipped in her right hip, but we’ll have to see another ortho who actually still operates to find out for sure.

I think that about covers it. We’re in October now. Sick season will be upon us soon, so her escapades out of the home will be even fewer. We have been taking her to church on Sundays, but this one will most likely be the last until Spring. Sorry folks. Hope is very high risk for things like RSV. RSV is apparently no big deal for us grown ups, but a very BIG deal for medically-compromised little babies like her. She’ll be receiving preventative shots for 6 months starting in November.

Anyway, her dedication ceremony will be this Sunday at our church. Of course, she was dedicated to the Lord before she was ever born…even before she was conceived, but it’s a tradition we like to follow. Please, feel free to join us if you’d like!

As always, thank you for your continued prayers, loving support and encouragement.

Soli Deo Gloria!

In which I clarify….sort of

It seems my last post may warrant further explanation.

Let me start by restating the intentions of my blog.

My first and greatest intention and motivation in my writing is honesty, and through that honesty – ministry.

I stated from day one that I would be honest. Sometimes brutally honest.

Honest about motherhood.

Honest about parenting a “special needs” or medically-complex child.

Honest about homemaking.

And eventually, honest about homeschooling (once we enter that chapter).

My main focus lately has been our medically-complex child. My hope has been that through our struggles, we could be an encouragement to others. Others who are themselves walking where we have walked, and those who, though they may never experience anything like we have, may one day find themselves walking a friend or family member through it.

Our prayer when we began this journey was that God would give us a testimony.

And he has!

I am thankful that we have been able to encourage, influence and inspire so many, and that through my writing I’ve reached people I would have never otherwise reached.

Hopefully, I’ve been able to open a few eyes to the pain and joys of an experience such as ours.

That being said. My intention has NEVER been to make others feel guilty and definitely not to elicit pity.

Do NOT feel sorry for us.

Do NOT feel personally attacked by my honest feelings.

We as humans, and as Christians especially, have made a lifestyle of hiding our true feelings. Hiding our struggles. Hiding our needs. Hiding who we are.

Afraid to ask for help. Afraid to be honest.

My goal is to overcome that…for myself and others.

Let’s get real people. With ourselves. With each other. With God.

If I’ve learned nothing else through this experience, I’ve at least learned that I need God and I need people.

I cannot do everything alone.

In regards to my previous post…I’m okay. I don’t feel unloved or uncared for. I wasn’t trying to make anyone feel guilty for not calling us. Honestly, I wasn’t.

So many people have done so many amazing things for us. It’s been unbelievable. However, so many friends told me things like, “I wanted to call you, but I didn’t want to bother you/I didn’t want to wake the kids/I knew you were busy/etc.” I just wanted people to know it’s okay. When someone is hurting, it’s okay to bother them….because most likely, you aren’t.

You might be just the voice they need to hear at just that moment.

It was just a reminder. Just to plant a seed…a thought for the future (for myself and others). To remember what’s important, especially when a friend is in need. Helping isn’t always as complicated as we make it. Sometimes just calling to say a kind word is enough.

Believe me, I needed to realize that as much or more than anyone else.

And I hope I remember it in the future when someone else is in need…because I’m usually the one saying, “I was going to call you, but….”


If I’d known how to ask

Countless times in the last months I’ve been asked “What do you need?” My answer has most often been, “I don’t know.”

As the writer of the blog post I recently read says, “I knew I needed, but I didn’t know what. I didn’t know how others could help me through, or even if they could….

This is how I would have asked had I known how to do so…..Walking A Friend Through A Child’s Major Illness (click to read).

If I’m totally honest, however, I’d have to make an amendment to the “Let me hide” part. Sure, there were hours and days when I preferred to hide and not talk – either so that I could hold it together….or just sleep. But truthfully, what I mostly felt when we were in the hospital (and even the short times we were home) was just the opposite. I wish MORE people had called me. Called instead of worrying that they would be bothering us. Instead, we often felt (however untrue it may be) that people didn’t care because they didn’t call. I don’t say that to complain. I say it for the benefit of those that may not understand or have been there.

Is it bothering someone to let them know you care? Or that you are thinking of them? Some days that’s all I’ve needed to know – that someone cared. Some days, I just needed someone to talk to. Sure, I could have picked up the phone and called someone…and sometimes I did, but that’s not the same. Not the same as someone taking the time to call me. Taking the time just to let me know we were loved.

Yeah, we know we are loved. We know people are praying. We know people care.

But when you are in the thick of it, you forget sometimes.

Sometimes, that little phone call can mean the world…even if I don’t answer the phone.

Sometimes just a voicemail saying, “Hi, we’re thinking about you” can mean the world.

Sometimes just the name on the caller ID is encouragement enough. Enough to say, “Someone cares.”

A Beautiful Creation

My tiny princess turned 4 months old just a few days ago.

Every month, every week, every day is a milestone. Every milestone a celebration!

Milestones that for other children would be seemingly insignificant are cause for celebration now.

So thankful for each moment, each miracle, each blessing we’ve experienced because of this amazing little girl.

This picture doesn’t do her justice. I can’t seem to get a single photo that captures what she really looks like.

This morning I have been sitting in awe of the beauty of our little girl. She is a gorgeous creation.

I watched her sleep for a few moments and just smiled at the beauty of this sleeping baby.

I held her for awhile, and again was awestruck. The most perfect lips and strikingly dark hazel eyes.

Auburn-tinted brown hair which has finally started to regrow after being partially shaved for her first shunt placement.(The stitches seen here are from her shunt revision surgery. They are gone now and just a scar remains.)

The softest, kissable cheeks, porcelain skin and a perfect little nose.

Can’t wait to see this little one grow into a strong, godly woman.

But all that is not what makes her beautiful.

If she had none of those things, she would still be beautiful.

Not just because I’m her mother and I say so.

She is beautiful because God says she is.

She is His workmanship. A work of art made by The Artist himself. Masterminded by the creator of the entire universe!

Just as our other children are.

Just as I am.

Just as you are.

Perhaps you needed to be reminded of that today.

But now thus says the Lord,
he who created you, O Jacob,
    he who formed you, O Israel:
“Fear not, for I have redeemed you;
     I have called you by name, you are mine.” ~ Isaiah 43:1

For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them. ~ Ephesians 2:10

You are altogether beautiful, my love; there is no flaw in you. ~ Song of Solomon 4:7

Those who look to him are radiant, and their faces shall never be ashamed. ~ Psalm 34:5