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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Post-op

Hope had G-tube placement surgery yesterday and is doing fine. This means her feeding tube is now directly into her stomach through her side rather than through her nose.

Hope after her surgery.

Hope after her surgery.

Now we can see her pretty little face. The whole thing! No tape and tubes on it.  Apparently, it will also be easier to use and easier to change.

Please continue praying for her recovery. She could come home as early as today, but it’s possible she will be there until tomorrow or later. It depends on how she handles her feedings once they start them back.

Oh, and as you can see, she is over 12 lbs now! Chunky little thing.

Thank you all for your prayers and support!

The Big Day

Today was the day we have been waiting for. After rescheduling and waiting and waiting. Hope finally had her swallow study.

Unfortunately, the study didn’t turn out as we had hoped. I’m trying to look at it positively. We haven’t gone backward. We actually have some more answers to her swallowing and breathing problems even if we didn’t see the progress I wanted to see.

I will endeavor to explain what we found out with non-medical terminology. From what I can decipher from the doctor’s handwriting and Google, it’s called oropharyngeal dysphagia. Basically, that just means she has a swallowing problem – which we already knew.

We were aware from her first swallow study back in May or June that she aspirates when she swallows – meaning that when she swallows, some food goes down her airway instead of her esophagus. What we have now learned is that in addition to that, much of what she swallows is also backing up into her nasal cavity. Almost nothing goes down her esophagus.

This explains her difficulty handling her own secretions and why we have to suction her so frequently.

She can have absolutely NOTHING by mouth. Not that she has been allowed to anyway, but even some of the things the Speech Therapist has used will have to be stopped for now. Aspiration puts her at high risk for pneumonia. We also don’t want to stress or damage the parts that are working properly.

We have a consult tomorrow with Pediatric Surgery to schedule a G-Tube placement. That basically means they will put a hole in the side of her stomach to insert her feeding tube rather than continuing to go down her nose. Continuing to put tubes down her nose and esophagus can potentially exacerbate the problem.

We will also be compressing her feeds – meaning she won’t be on a continuous feed anymore. Thankfully, that means one less thing she will be attached to all the time. She will only be hooked up to the feeding pump during feedings. As she gets bigger and we compress them more, it will free her up a little more…especially once she is fully weaned off of oxygen.

We do greatly appreciate the prayers that went up and continue to go up. I know I was praying through most of the test, but as I told our nurse when we left, God had other plans. I trust Him and look for the blessings in all of this.

Hope also underwent an ultrasound this past Tuesday for her hips. That was a great report! Her hips are NOT displaced as suspected, nor does she need any tendons snipped. The only thing found was that one leg is less developed than the other, but that has been apparent from day one just by looking at them. The orthopedist was quite pleased with those results. As for the prognosis, we will just have to let her grow and develop to find out just what her little legs can do. At her age, it is difficult to measure her ability since she cannot respond to commands yet. Right now, I’m believing she will walk one day. Of course, as our enthusiastic Physical Therapist will tell you, she WILL walk. We won’t accept can’t!

The praise in today’s outcome is that I am not crushed. Yes, I was looking forward to having a big cheering party in the radiology department if she had passed, but that’s okay. If I have learned anything in the last year, it’s not to get discouraged. God is still God. This is just a season, but even if nothing ever changed, I’d still be happy and blessed with this little girl.

Our other 2 princesses are joyfully spending a couple days with their grandparents, and I got to spend lots of time with Hope today…so I call it a good day.

I don’t get to talk about my other two blessings much, so I just wanted to share what my oldest said yesterday. “Mommy, when I grow up, and Joy and Hope…we can go walk in the forest (behind our house) and see deer….and I’ll hold Hope’s hand in case she gets scared.”

I can’t help but brag on this 3 year old, tender, sweetheart of a girl. Grace knows just how to melt my heart. I cannot begin to tell the joy it gives me to see the love the 2 oldest have for each other and for their little sister. I can’t wait to see the relationship that develops between these 3 special sisters. It will be a beautiful thing to watch.

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There is surely a future hope for you, and your hope will not be cut off. ~ Proverbs 23:18

As you know, we consider blessed those who have persevered. You have heard of Job’s perseverance and have seen what the Lord finally brought about.
The Lord is full of compassion and mercy. ~ James 5:11

Find rest, O my soul, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken. My salvation and my honor depend on God; he is my mighty rock, my refuge. Trust in him at all times, O people; pour out your hearts to him, for God is our refuge. ~ Psalm 62:5-8

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.

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

Undeserved Gifts

If you’ve read my blog at all, you know I have an amazing little baby girl. But if you don’t know me personally, what you may not have realized and should know is that she is not my only child.

I have 2 other awesome, intelligent, funny, graceful, joyful little girls.

Ok, maybe not so graceful since at the ages of 3.5 and almost 2, they fall down…..a lot.

But a different kind of grace.

An undeserved gift. The gift of children.

I always knew if I had a little girl, her middle name would be Grace for that reason.

This is our “Grace.”

My tender-hearted 3.5 year old who tells me 20 times a day, “I love you, Mommy.” The one who falls apart if you just look at her sternly; she’s our sensitive one. The one who pushes our buttons and melts our hearts…sometimes in that immediate order. She loves to “have snuggles” and praise is a big deal to her.

This little girl has been missing her mommy something fierce these last few months, but she’s strong and she’s an amazing big sister. Sometimes she even forgets she’s the big sister and thinks she’s mommy.

I don’t know a person who knows her that does not adore her. What a woman she is going to be.

After God blessed us with Grace, a “gift” we thought we might never have (that’s a story for a future post), in his wonderful way, he blessed us with Joy.

This is our “Joy.”

Oh, how aptly we named her (all of them really). She is our happy little, gap-toothed clown. From the beginning, she was the smiliest (yes, that’s a word), baby I’d ever known. She may only be almost 2, but this kid has a sense of humor. She also knows how to work her unbelievably long lashes and big blue eyes to her advantage. My husband and I comment at times that her future husband is not going to know what hit him.

Boy, does she get into things her big sister never even thought of. A sneaky one and a climber. She flashes that smile, bats those eyes, and you can barely remember why you’re mad at her.

Then there is our “Hope.”

She’s spent at least 10 of her 15 weeks of life in a hospital bed. She’s a tough little cookie with an attitude. When she’s mad, she lets us know it. But she loves to cuddle and she can win a staring contest any day of the week…when she’s in a good mood. We still have a lot to learn about this little doodlebug’s personality, but I can’t wait to find out.

I don’t deserve these girls, these “gifts,” but by the grace of God they have been entrusted to me, and they are a blessing.

I love my girls. All 3. I just wanted you to know that. To know that Hope is not my entire world, and everything does not revolve around her…though it may feel like it at times.

I have 2 other very special little girls who need their mommy and daddy right now too. This has been hard for them, and they are trying to understand….

Why their world has been turned upside down.
Why they have to stay with Grandma or Na-Na….again.
Why they don’t see their mommy for days at a time because she’s at the hospital…again.
Why there are nurses in their home almost every day…the home they have spent much of the last 4 months away from.
Why their baby sister is so sick.
Why she doesn’t breathe, eat or play like they do…or even like she did when she first came home.

Their struggling just to understand why.

I have THREE beautiful daughters who are struggling through this ordeal, so when you say a prayer for Hope, say a prayer for my other girls too, please.