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.

 

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

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.