You should see the other guy

Last Tuesday, Hope had a broncospy scope. She was put under anesthesia and her ENT looked in her airway for problems and/or progress. Sorry I haven’t shared this or the results. It’s been a busy week and it’s hard to type it all on my phone.

Hope’s airway looks good except for a granuloma in her airway above her trach. It doesn’t appear to be causing any issues right now, but is blocking 50% of her normal airway and would have to be removed if they took the trach out.

The ENT now believes that her inability to manage her secretions is neurological and not congenital – meaning it isn’t something she can just outgrow by getting bigger. The trach is essentially treating symptoms (excessive secretions and aspiration) and if it were removed at this time, her lungs would fill up and she would drown. As of right now, no changes will be made. We’re still hoping to get her on an HME valve sometime in the near future (it’s basically a humidification filter that wouldn’t require her to be connected to anything), but she has to be off of oxygen for that. We had her weaned to the minimum amount during the day, but since she got pneumonia again a couple weeks ago and a nasty case of bronchitis now, she’s on more oxygen than she’s ever been on. It seems as if we are moving in the opposite direction. It is somewhat discouraging, but we continue to trust God.

Today is Hope’s birthday. The Lord revealed something to me today – today is a victory! I woke up this morning looking like I’d been punched in the face after a long, hard night of her bronchitis. I jokingly said to my husband, “You should have seen the other guy.”

I then received messages from my mother that she had been praying since 2am without even knowing anything was going on during the night (God often wakes her to pray like this). She also sent me this scripture:

Keep a cool head. Stay alert. The Devil is poised to pounce, and would like nothing better than to catch you napping. Keep your guard up. You’re not the only ones plunged into these hard times. It’s the same with Christians all over the world. So keep a firm grip on the faith. The suffering won’t last forever. It won’t be long before this generous God who has great plans for us in Christ—eternal and glorious plans they are!—will have you put together and on your feet for good. He gets the last word; yes, he does. – 1 Peter 5:11 MSG

God revealed to me that a spiritual battle is waging, and though my swollen face has a physical cause, I feel it is also spiritual…physical evidence of a spiritual battle. You see, Satan wants to destroy my child and my family. He has set out to destroy her from before she was born. Many of you have told us over and over, and we have said it ourselves, “God has big plans for her!” Well, guess who else knows that? She has touched so many in just her first year, and she can’t even talk yet! Just wait until she gets her say! So yeah, he has tried and is trying to destroy my child…but what the devil meant for evil, the Lord is using for good!

I hold to the words the Lord spoke to me back in July when we were making the gut-wrenching decision whether to go through with decompression surgery to relieve her Chiari malformation, and He reminds me often – “I’ve got this!” God sees the big picture. God saw 6 months down the road when the MRI would show that she has NO Chiari malformation. I see this moment. He sees from beginning to end and on into eternity. He reminds me of this as my human self gets weighed down and burdened for her suffering. When I don’t get the answers I want now. That still, small voice reminds me again, “I’ve got this. I’m in control. Let it go. Rest child.”

Rest. Something I could really use right now. Will you continue praying with us and for us? Help us fight this battle.

 

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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.

DSC08803

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?

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.

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“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!