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?

Hope that is seen is not hope

To read Part 1 of Hope’s story, READ THIS POST!

When Hope was about 5 weeks old, we took her to the ER with respiratory distress. She had been bottle-feeding fine for a couple weeks, but had all of the sudden started aspirating over the previous 24 hours. One of the first things they did was a CT scan to check for a shunt malfunction. The shunt was fine. At some point later that night, a doctor mentioned Chiari. Something we didn’t even know she had and certainly didn’t know what it was. We educated ourselves, but were told many times that neither of those seemed to be the problem.

After a long hospital stay at MCG where doctors – which included several residents, surgeons, interns, attendings, specialists, etc – spent 5.5 weeks chasing rabbit trails and treating symptoms without looking for a real overall cause, we came home with a trach, a feeding tube, a bunch of equipment, home nurses and more questions than answers.

Our pediatrician was not at all pleased with the answers we did or did not get. Having a grown child of his own with Spina Bifida, he has became one of Hope’s greatest advocates. We are very thankful that God placed him in our path (that is another story, but we have not doubt that it was providential). He suggested we seek a second opinion on her condition from a pediatric neurosurgeon. He was fairly convinced that her Chiari II was the major factor in most, if not all, of her problems. We had the same feeling all along.

According to The Spina Bifida AssocitationNewborns and young infants with [symptomatic Chiari] tend to present difficulty swallowing that leads to poor feeding, weak or poor cry, inspiratory stridor (noise on breathing in) frequently exacerbated by crying, arching of the head and possibly facial weakness, among others. When severe, the symptoms may result in insufficient breathing to maintain life. (Emphasis added). Additionally, other sources also list an inability to gain weight, periods of apnea, and aspiration. All symptoms she has/had. The doctors also knew she had the Chiari malformation, so why was everyone so insistent that it’s NOT Chiari? Seems like common sense, right? (I mean, ever heard of Occam’s Razor? “The explanation requiring the fewest assumptions is most likely to be correct.”) Apparently not. Like I said, they just wanted to treat symptoms and spend a week worrying about acid reflux. Frustrating to say the least. She had CT scans, EEGs, sleep studies. All along we were told she’s fine. Her shunt is working fine. It’s not the Chiari.

Toward the end of our stay, at the urging of our pediatrician and with the neurologist finally on board, they finally did an MRI. However, the neurologist, radio-neurologist and neurosurgeon could not agree on the results. The neurologist was the only one that still wasn’t confident that “all was well.” The day before we were discharged, an MRA was performed – an MRI with contrast. We went home the next day not knowing the results.

A week later, we saw our pediatrician and he began the process of finding a pediatric neurosurgeon for a second opinion. Though we’d been in what is touted as an amazing children’s hospital, there was no pediatric neurosurgeon. (Nor was our experience in this “great hospital” all that wonderful).

Two days after that, we were back in the hospital with a trach infection. Back in the same hospital…as much as I didn’t want to be there. We were there 5 days basically waiting for cultures to grow and make sure she was on the correct antibiotics. The last day of that visit, someone finally shared the MRA results with us. Lo and behold, CSF (spinal fluid) was not flowing as it should be around the cerebellum and brain stem….the location of the Chiari. The neurosurgeon recommended we take her to see a pediatric neurosurgeon to determine if the surgery is necessary…something we were already planning to do.

It was thought that we would have to travel to Atlanta or Charleston. It turns out the chair of the neurosurgery department at USC in Columbia is a pediatric neurosurgeon which saved us a longer trip. A blessing, for sure. We made the 1-hour trip to visit the pediatric neurosurgeon in Columbia just this past Thursday afternoon.

We were his last appointment of the day. We sat in his personal office, my husband and I with our little one, for at least an hour. He proceeded to tell us that, yes, indeed, our tiny little 6 lb and some change, 3 month old baby girl needed this serious Chiari decompression surgery in which they would remove the top 2 vertebrae from her spine/skull in order to alleviate the pressure. He was honest. He was blunt. The surgery is dangerous. Not doing the surgery is dangerous too. He cited statistics. Pulled out textbooks. Referred to previous surgeries he’d performed. He told us the difficult truth. The symptomatic Chiari malformation is currently the leading cause of death in the Spina Bifida population, particularly in early life (The Spina Bifida Association).

The first part of the process is a shunt revision. Always make sure the shunt is working properly before doing the decompression. This is textbook. Of course, she’s had multiple CT scans. Her shunt is working properly. Nevertheless, the rules say, check the shunt….and while he’s in there, he’s going to replace most of it anyway. As my husband explained it, “It’s like taking your engine apart. While you’re in there, you might as well replace the seals.” So we scheduled the shunt revision for the following Tuesday and told him we’ll have a decision about the decompression surgery by that time. We need time to process, think, discuss and, most of all, PRAY.

Before leaving the hospital, he sent us for a new CT scan and x-ray to check placement and prepare for surgery.

The ride home was…quiet. The first few hours at home were much of the same. We tried to talk about it, but neither of us could remember much of the details. We were numb. We were overwhelmed. We were scared. We couldn’t even really understand what we’d been told. We’d asked every question we could think of, but left with still more questions. I finally started Googling. Thank God for Google. After much searching, I finally found the link that I’ve linked to several times above. It clarified everything he had told us in simple language that our very weary brains could understand. It was clear. It was what we had already known before we spoke with him, but had become muddled with fear and confusion. Satan’s handiwork, no doubt.

We talked. We prayed. We prayed for her. Over her. Together. Separately. We finally went to bed at 1:30am.

I awoke in the morning…praying. I read scripture. I prayed more. I wanted an answer…a very specific one. But I  also wanted to release my fear. I didn’t want to make a decision out of fear.

Everything I read, everything I felt can be summed up simply. “I’ve got this.” That’s what I was hearing. He’s in control. We’re not…something that is hard to admit at times. Ultimately, we have no control over her life or death….no matter what our decision. That is in His hands….so we let go. We began to trust. And we felt some peace.

We spoke with my parents, and they confirmed what we were already feeling. Do the surgery. You’ve known this is the problem. We’ve been praying for someone to come along with real answers. God has sent that person.

I think we had made our decision. We went about our day.

Around 4:15 pm, the phone rings. It’s the neurosurgeon. Not his office. It’s him. He’s just read the CT scan…by the urgency in his voice, just then. It appears her shunt is malfunctioning. What? Yeah, her shunt is malfunctioning. “What does that mean?”

“Most Chiari symptoms are actually shunt malfunctions.” His words.

It could have been malfunctioning all along, or just yesterday (though I think it was longer than that at least). There’s no way to know.

We are excited. Excited that her shunt is malfunctioning?! Yes! Because that could solve all her problems. Do we know for sure? No. But it’s a HOPE to hold onto.

So we go forward with the shunt revision, but rather than doing a Chiari decompression soon after, we will wait. We will wait, hope and pray that this is the answer. That it’s that simple. That this was the problem all along. Something we were repeatedly assured was not a problem. Because according to him, a shunt can look fine on the scans and still be malfunctioning. Hmm.

He decided it was best for us to bring her on to the hospital last night (Friday) even though surgery is not scheduled until Tuesday. Just in case anything else were to go wrong since we live an hour away. We saw him this morning. He hopes to move surgery up to Monday.

Praise God for well-trained doctors. For doctors who advocate. For doctors who look for real answers and pay attention to the patient. Praise God.

I’m actually excited about surgery. Excited. That’s crazy, right? But this could be the answer. It might not be, but that’s what hope is all about right? We have to hope. If we didn’t continue to hope….well, this journey would be much different.

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

Update: She had her surgery on Sunday. It went fine. Read later posts for further update.

The Beginning of Our Journey

I will try my best to somehow provide some background information on this journey we’re now on. Be warned, this will be long.

Somewhere around 20 weeks of this last pregnancy, we were told something didn’t “look right” on the sonogram. We were sent to a specialist and it was determined that our little girl (our 3rd) most likely had Spina Bifida. A condition I had only heard of, but knew nothing about, and, as far as I knew, never knew anyone who had it. So the research began. Just enough to know what to expect, but not enough to scare me.

The plan was to do a c-section at 37 weeks to prevent labor that might cause further trauma to her spinal cord or brain. Until then I would be monitored closely.

At about 6 months, I began having contractions and was sent to the hospital. They shot me up with turbuteline and sent me on my way. I spoke to the regular ob 2 days later and he wasn’t concerned. He said, “We can’t keep you from having contractions.” Um, ok?

The next time I saw the specialist, I was informed that contractions were absolutely to be prevented if at all possible, so I was put on a regular course of meds to prevent contractions…and eventually made the decision to see the specialist only since the regular ob seemed to have no concern whatsoever for my child’s well-being.

After just a few weeks, I went for a routine check-up, only to find that I was having contractions 7-8 minutes apart…and not feeling most of them. I was sent straight to the hospital where I was confined to a bed with a steady drip of magnesium. I stayed there for 4 days before being released to go home on bed rest. I then spent the next month with a steady stream of friends and family through my house as I was unable to care for my other 2 girls – ages 1 and 3.

Not long after my hospital stay, I noticed changes. My once extremely active unborn baby was no longer active. I had taken refuge in the fact that she was so active during the pregnancy since children with Spina Bifida often suffer from paralysis to some degree. She was obviously not paralyzed. However, she had almost stopped moving entirely. I kept telling the dr and nurses, but they didn’t seem concerned since children with her condition usually don’t move a lot. She also practically stopped growing. This did concern them to some degree, and again, I explained to them my concern over her lack of movement which was NOT normal for HER. I was told to do kick counts that night and go to the hospital if she didn’t do her X number of movements in X number of hours. That was a Tuesday.

I was 34 weeks pregnant.

Needless to say, we went to the hospital where I spent the next 4 days being monitored. By the end of the week, I was hanging out comfortably in the maternity ward – no baby yet though. My dr was considering keeping me until delivery at 37 weeks, but said we’d see how things were over the weekend. Later that same day, I got an ultrasound and was moved back to L&D immediately after. My whole family showed up thinking we’d be having a baby. We didn’t.

The next morning, my dr came in WITH the sonographer. After a short ultrasound, she said plainly, “We’re going to have a baby.” I asked, “When?” Her response? “As soon as your husband can get here.”

Blood was no longer traveling through the cord. Hope was basically starving. We had to deliver that day.

Hope was born by emergency c-section at 4:10pm that day.

The NICU staff had to perform immediate chest compressions to get her breathing. I was suspicious that this might be going on. My husband was watching it, but said nothing to me to keep me from worrying. I waited anxiously to hear that first cry, and of course, I cried when I heard it. She was then whisked away to the NICU for further care. I barely got a peek as she was rolled by.

The medical team working on Hope immediately after her birth.

It would be the next day before I would see her, and days after that before I would hold her. She would spend the next 3.5 weeks there.

At the time of her birth, the dr found that her cord was EXTREMELY long…made that way by all her movement early in the pregnancy. The cord had become “hyper-coiled” in the process. Preventing flow through it. Thankfully, we caught it in time.

First time holding Hope.

The first day I saw Hope, I was told she was the sickest baby in the NICU. She had a long list of issues already – lung and heart problems, jaundice, low-birth weight, along with her existing Spina Bifida. We were told her NICU stay would be a roller coaster or ups and downs. She mostly went up. 5 days after she was born, she had surgery to repair her myelomeningecele (her specific type of spina bifida). A week later, she had surgery to insert a shunt because she had developed hydrocephele (common with spina bifida). She improved quickly.

At the end of 3.5 weeks, she was the healthiest baby in the NICU and was moved to Peds, where she and I spent 4 days before going home. She was breathing well. She was eating well. She seemed perfectly healthy…except for the fact that she was still not back to her birth weight.

At home

Hope spent 9 days at home. For 7 days, she was fine, other than the fact that she didn’t sleep well. Par for the course, I thought. Then she started sounding congested and began having problems feeding. By the night of day 8, we knew something was wrong. She couldn’t take a bottle. She was drowning and gagging with every swallow. Early in the morning of day 9, we took her to the ER. She was admitted to the hospital.

We would be there 5.5 weeks.

The next several weeks would actually be a roller coaster – of drs, of treatments, of diagnoses, of battling to get someone, anyone to listen to us. My child was fighting with everything she had to breath and they were concerned with reflux. REFLUX! We had stopped bottle feeding and she was being fed through a tube. It took over a week before any real tests were done. They spent the first week speculating and trying meds while she was on oxygen and tube feeding. Every muscle in her body tensed and arched trying to breath.

We had a swallow test and found out she aspirated every thickness possible.

They gave her caffeine to stimulate her lungs.

Zantac to stop her reflux.

High-flow oxygen to push air into her lungs.

Robinul to dry up her own secretions that she was aspirating.

But they were only treating symptoms.

X-rays showed no pneumonia. CT scans showed her shunt was fine. No answers.

We found out she had something called a Chiari malformation, but no one seemed to be concerned with that as a possibility. Strange since if you look it up the problems associated it with are swallowing, breathing, apnea, etc. All issues she had.

After 2 weeks, we had a ENT consult. They performed surgery to repair a floppy airway. We were excited because we had a diagnosis and a solution.

It didn’t work.

A week after that, we made the difficult decision to have a tracheostomy. I didn’t like this decision. I cried for hours when I learned I would no longer hear her cry. A baby’s cry – a beautiful thing you take for granted, even find annoying at times, until you’re told you’ll no longer hear it.

Seeing her post-op was like looking at a different baby.

She was calm.

She was relaxed.

She was breathing…easily.

I breathed easily.

I forgot about my previous fears. Her cry didn’t seem so important anymore. Her new cry is something I’ve become so accustomed to that I don’t even think about it much. It’s just part of her.

Her trach would be the only treatment from her hospital stay that made any obvious improvements to her condition.

She underwent several more tests before returning home with her trach and feeding tube.

For Part 2 of the story, READ THIS POST.