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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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.

BUT…

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

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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

 

For Your Viewing Pleasure

Just a quick post to share a few videos and show just how much our little Hope is improving.

Here she is laughing with her Early Intervention Coordinator with her nurse and I looking on joyfully.

Reaching for toys and such is something all of her therapists have been working on for several months, and just this past week, she finally got it. You can just see the determination on her face and the joy when she gets it and smiles up at her physical therapist. We were so excited!

Keep Hope in your prayers this week as she will have a swallow study on Wednesday to determine if she’s ready to handle food by mouth. If so, it will be a slow weaning process, but a big, exciting step nonetheless.

Mercies in Disguise

It has been 3 months since our last hospital stay – *deep sigh of relief*- and our little chunker is now up to a whopping 10 and a half pounds! Now that some of the clouds have lifted, so to speak, I can look back over the last months and see God’s hand at work.

I read a blog post last night that resonated with me (surprise, right? I’m always getting inspired by other people’s writing). Though she writes about God seeing them through Cancer, what she had to share was exactly what I’ve said over and over (or thought if I haven’t said it). She writes:

Not only did God provide for our physical needs, He also provided for our emotional needs. Before cancer invaded our lives, I’d look at people going through difficult situations and think, “Wow, they are so strong. I wonder how they’re doing it?” 

Now, insert Hope’s various medical issues instead of Cancer and you’re talking about us.

The funny thing is, we’re now the people others refer to when they say that.

I cannot begin to tell you how many times I’ve heard, “I don’t know how you do it. I could never do what you’re doing.” To which I think, “Neither can I.”

And I can’t.

It is not me. It is Christ in me. It is his strength in me.

The blogger goes on:

But as we walked through cancer, the following  verses became very real to me.

For we do not have a high priest who is unable to sympathize with our weaknesses, but One who has been tested in every way as we are, yet without sin. Therefore, let us approach the throne of grace with boldness, so that we may receive mercy and find grace to help us at the proper time. ~ Hebrews 4:15, 16

Prior to my husband’s diagnosis, I didn’t have that strength, nor did I need it, but God provided it at the proper time.

God provided for me at the proper time.

To every person who thinks they could never do what I have done, or endure what I have endured – you are right. YOU cannot.

But Jesus can.

He has. He will – at the proper time.

Believe me. One year ago, I could never have imagined where this journey would lead, but I am thankful for where I am. Where we are.

Don’t get me wrong. I have prayed, and prayed, and prayed for my child. The desire of my heart has been and is for her total healing, and it hurts that my child has had to suffer what she has. However, I would NOT give up what I have seen, heard and experienced of my God.

There were things I believed about God. Now I know them.

I believed He was my provider. Now I know He is.

I believed He was my comforter. Now I know He is.

I believed He was my healer. Now I know He is.

I have learned how weak I am AND just how strong He is.

I have learned just how small I am AND how big He is.

I have learned that with God, I can endure far more than I thought possible.

I have learned that the Lord has made me far more capable than I imagined. I have also learned that I still have a long way to go.

I am thankful that He chose me for this – that He is taking the time to refine me and build my character. That He sees something worth building.

As one of my current favorite songs – which has become my battle cry of sorts – says, “You hear each spoken need. Yet love us way too much to give us lesser things.”

I can truthfully say, just as my fellow blogger did, that while I wouldn’t wish any of this on my worst enemy, I wouldn’t trade the experience and the lessons I have learned for the world. I, too, feel like Job who after coming out of the storm of his life declared,

My ears had heard of you but now my eyes have seen you. Job 42:5

As one of my current favorite songs – which has become my battle cry of sorts – says, “You hear each spoken need. Yet love us way too much to give us lesser things.”

Thank you for hearing our spoken needs, but for knowing our deeper need. Our need to know you – not to just hear of you, but to see you.

Thank you Lord for the trials of this life. Thank you for your mercies in disguise.

Blog credit: http://www.thebettermom.com/2012/11/he-will-meet-you-in-the-storm/

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Here’s the song if you’d like to hear it. Blessings by Laura Story. One of these days, I’ll get around to singing it.

When He Provides

I have been doing a pretty good job of keeping up with the checkbook lately. Better than I had been doing.

We’ve been keeping receipts and entering them right away. Rather than waiting 2 weeks and just pulling up our statement online and copying everything down (pointless, right?).

I thought we were okay.

But I messed up. Forgot to write in an automatic payment that comes out in the middle of the month.

I figured out Sunday that we were broke. BROKE.

The problem was we were low on groceries, desperately close to running out of baby formula, and payday wasn’t coming for 3 more days. We could make it without the groceries, but the formula, we couldn’t. I wouldn’t even think about those 2 student loan bills that haven’t been paid yet, and are 2 weeks behind.

So I prayed…and after church, I called my mom, in hopes that she would have some magical answer.  That’s what mamas are for, right? They have the answer to everything…and she did. She prayed.

We both prayed for provision.

I started going through my wallet, searching for money.

I found $6 and some change. I also found an American Express gift card that had $3.22 left on it. Those combined with the $5 formula coupon I had, I figured I could eek by.

Then I found it. A $100 grocery store gift card.

Now, I remember exactly when I was given this grocery card.

And I pretty distinctly remember using said card. In fact, I remember using every bit of that card AND being asked by the cashier whether I wanted it back. I told her to toss it.

At least, that’s what I remember. But this card was in my wallet with the little card along with it that had $100 and my name on it.

That afternoon, I took what I had found, along with that card, to the store. Fully expecting that I would be getting nothing but formula and coming home even $10 broker than I was before.

As soon as I walked in, I went straight to customer service to see if perhaps there was a few dollars left on it that I had perhaps forgotten about.

There were a few dollars all right. 100 of them to be exact!

I immediately thanked the Lord for His provision and answer to our prayers…then I bought groceries.

Let me add to the story, not to gloat, but to remind you that obedience is important to God. I knew that morning before church that money was very tight. My human nature did not want to let my husband give our tithe check that I had written earlier in the week. I knew that was almost the only bit of money left in our account, and we needed it. I also knew withholding from the Lord was not the answer, therefore I submitted. I was obedient to the word, trusting that God would provide our needs…and HE DID!

This is just ONE of the examples of how God has walked with us through this trial. He has provided for us, calmed us, strengthened us, and given us everything else we could possibly need. In our weakness, He has shown himself strong! We prayed from the beginning that He would give us a testimony…and He has done that over and over again.

Therefore do not be anxious, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the Gentiles seek after all these things, and your heavenly Father knows that you need them all. ~ Matthew 6:31-32

Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? ~ Matthew 6:26

Bring the full tithe into the storehouse, that there may be food in my house. And thereby put me to the test, says the Lord of hosts, if I will not open the windows of heaven for you and pour down for you a blessing until there is no more need. ~ Malachi 3:10

Just smile

We’ve hit the one month mark! We’ve actually been home a full month!

I think Hope is just as happy as we are about this because SHE SMILED TODAY!

TWICE!

You read me right. She’s done things before that we called smile, but we’ve never been totally sure. It has never really shown in her eyes.

But today, oh yes, she smiled.

It was beautiful.

I actually thought I would cry (probably would have if the nurse wasn’t right there and we weren’t in the middle of giving her a bath and doing trach care).

In fact, the second time, it almost looked as if she were laughing. LAUGHING!

I already knew this little one was going to be spoiled, but if she keeps doing that, we’ll be powerless.

In other news, a PRAISE REPORT and a PRAYER REQUEST.

PRAISE: Her right foot DOES NOT need a cast. Yay! What was thought to be a “dropped foot” is actually a contracture. Basically, the muscles that pull her foot down are working better than the ones that pull it up. It just needs some physical therapy.

Prayer request: The orthopedist wants an x-ray of her right hip because he’s afraid it’s displaced. Something the PT in the hospital had concern about 2 months ago, but we were told by someone that it was fine. However, it must not be too terribly serious because we don’t return for the x-ray for 4 weeks.

Also, one of our pediatricians has recommended Hope receive a medication called Synagis. It is apparently a very expensive drug given once a month September through March to prevent RSV – something common and easily overcome by a healthy child (similar to a cold), but potentially threatening for a child like her. We’ve never heard of it, and know very little about it, so we’re considering this carefully. If you know anything about, please enlighten us!

We had our first speech therapy session. Based on what I’ve seen, my fear is that overcoming her swallowing problems might take longer than we had hoped, but I hold onto hope that come Spring/Summer of next year, she will be rid of all her “attachments.”

Otherwise, she continues to grow, show signs of physical and mental development and is the healthiest she’s ever been.

Keep praying!

Hope does not disappoint

It’s been some time since I gave an actual update on how Hope is doing, and since I know many of you come here just for that purpose, I figured it’s about time.

We have been home for 3.5 weeks! The longest so far!

These pictures were taken just this morning.

She had a minor case of pneumonia in one lung after coming home from Columbia, but was able to stay at home. With antibiotics and lots of coughing, she was able to get over it pretty smoothly.

There have been 3 emergency room visits during that time. 2 just to have her feeding tube put back in after being pulled out, and 1 time because she had a fever.

I had concerns about the fever, even though it was low grade, because as far as we know she has never had one. Never. Not when she had tracheitis. Not when she had pneumonia. So I was understandably concerned. However, it just turned out to be a cold.

She’s finally catching up on her weight. Her last weight check on Thursday was 7 lbs 4 oz! That was a 6 ounce increase from the previous Thursday! The nutritionist was very pleased, so we are sticking with our current feeding plan. It seems to be working. Although, I think much of it can also be contributed to the fact that she has been at home longer with less stress.

She has also grown in length – measuring now at 19 inches, I believe. 2 inches longer than at birth. In proportion to her weight, she actually looks incredibly long. Of course, she probably takes after her 6’4″ daddy in her height. Why not? Both of the other girls do. They will surely surpass me at 5’2″ before I know it. I’m doomed to have all 3 of my children look down on me one day.

Another big answer to prayer – we took her for a renal ultrasound this past Thursday and her hydronephrosis caused by her neurogenic bladder (a lack of bladder control common with Spina Bifida) has downgraded all the way to level 1! What does that mean? Well, when she was just a few weeks old, we began having to do in-and-out cathing for her every 4 hours. At that point, her hydronephrosis was level 4. Over time, she improved enough that we were able to keep spacing apart the cathing until we no longer had to do it at all. She has been wetting diapers normally now for awhile, but this was just confirmation of of her improvement. For all intensive purposes, her kidneys are behaving normally now. This is a huge deal, as bladder control issues almost always accompany Spina Bifida.

This doesn’t mean she will never have any bladder problems in the future, but we can pray that she doesn’t, right? Who says she can’t be the exception to the rule?

The first meeting with Occupational Therapy was last week. She seems to fall at about 2 months old in development which we are quite excited about! She was born 5 weeks early, already putting her a month behind developmentally, but we didn’t know how much her hospital time and all her other medical issues would set her back. Only 1 more month seems like nothing in the grand scheme of things. Easily caught up by 2-3 years of age.

She has started moving her head side to side easily, tolerating her “non-favorite” side better than ever. This is a huge deal, as she has adamantly preferred her left side for the last 3 months. If you put her on her right side, she’s arch her head until she got onto her back where she could turn her head to the left. Her breathing had even become positional to that side before she had the trach. She seemed unable to turn her head to the right at all, but has since proven us wrong. I was thrilled the first morning I saw her do it. It’s things like this that would be so meaningless for most babies, but it’s big stuff to us.

Her ears are one of her favorite playthings these days. This is cute, but worrisome…as they are dangerously close to that tube she so likes to pull out. Hence, she has been condemned to a life of mitten wearing until further notice. Though our “Little Houdini” even finds ways to get those off (she may be at 2 months developmentally in her physical abilities, but I don’t think she’s lacking anything mentally!)

She is able to grab toys if you get them close enough to her hands. Though she doesn’t reach out yet.

The last big thing – she is kicking her little legs like crazy. If you know anything about Spina Bifida, you probably know that many people with it have varying degrees of paralysis or muscle weakness in their legs. Many walk with splints, crutches, braces, walkers or use a wheelchair. She may very well need braces on her ankles (we’ve been told she probably will, especially on her right foot), but she is most certainly NOT paralyzed. We knew this even during pregnancy, but the amount of leg movement she is demonstrating lately is even more encouraging.

We’re still struggling through some of this, and Hope still has a long way to go, but we’ve settled into somewhat of a routine. We have wonderful home nurses helping us out, and we have the strength and hope of our Savior walking us through each and every day.

I caught the hint of a smile 🙂

Please continue to pray for her healing. You can specifically pray for her continued weight gain and growth. Also, we will see the NICU doctor and Peds surgeon again in October to reassess her feeding issues. Their plan is to place a G-tube once she is big enough. This will alleviate the tube in her nose. I do not know whether it would still be placed in her duodenum or if measures would be take to allow her to feed into her stomach again. We shall see.

Rejoice in HOPE, be patient in tribulation, be constant in prayer. ~ Romans 12:12

Through whom also we have access by faith into this grace in which we stand, and rejoice in hope of the glory of God. And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance;and perseverance, character; and character, HOPE. Now HOPE does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us. ~ Romans 5:2-5