And Now He's Better

Nicholas failed his most recent swallow study. I don't honestly remember if I posted anything about that but he did. A swallow study is exactly as it sounds. Barium is mixed with things that Nicholas eats (a bottle of formula and some purees) and then he swallows under an x-ray while a radiologist and speech therapist watch to see what happens.

It was frustrating for Mike and I because we had very high hopes that he would pass. His speech therapist was sure he was doing fantastic and was surprised also. What we found out was that he's still silently aspirating approximately 50% of the time. So basically, one out of every two swallows he is aspirating at least some of his food. That's a big issue because when you put food into your lungs you increase the likelihood of pneumonia. It was determined he's still not safe to eat by mouth and that we would schedule another study soon. The speech therapist believes he may have aspirated more than he normally does because he's teething right now and has lots of extra drool. Either way, he's still 100% tube dependent.

I will be totally honest and say that I have viewed Nicholas's g-tube as an albatross around his neck. I know that we had it placed in the hospital to get him discharged because the NICU wouldn't discharge him until he was safe to eat, and eating by mouth was not going to happen (he was aspirating approximately 75% of the time on his NICU swallow study - so huge improvements in only 7 months), so we agreed to the g-tube surgery and learned how to tube feed him. I will admit it's been rough on Mike and I (mostly Mike) to take him to speech therapy two times a week, week after week, and to continually hear that he's still NPO (not allowed to eat by mouth). I sigh every month when his box of supplies arrive and we dutifully put away the bags and pack away the extra Mic-key buttons and g-tube extensions. I try very hard to not let this show because in the event that he needs to be tube fed when he's old enough to realize, I don't want to discourage him or make him feel like he's "different" but it's been frustrating.

Today as we were walking home from taekwando, Zach was talking to me about a conversation that he had with his friend at school. He said, "I told her that I used to go to the hostible a lot and then Nicholas got his g-tube and now he's better and I don't have to go to the hostible anymore." It stopped me in my tracks. Because he's right. We used to have to go to the hospital every day. I used to have to go home every night and leave my youngest child sleeping in a hospital bed ten miles away, being cared for by nurses (phenomenal nurses, don't get me wrong, but not being cared for by us), I used to have to check myself out of the unit to use the bathroom and then scrub in and check back in to see him. Then he got his g-tube and he came home. I had let the frustration of him failing his swallow study consume me to the point that I forgot what the g-tube had once represented - freedom to bring our child home. 

And really, if the worst thing that comes from Nicholas's hydrocephalus is a g-tube, I am pretty sure we are among the lucky ones. If there's one thing my kids have taught me over and over is that everything will happen on their timeline and not one minute sooner. So I will give Nicholas his time. If he never is able to eat liquid by mouth then that's that. If he uses a g-tube until hes 5, that's that. I will stay patient and remember this is not my journey to walk and that getting frustrated will do absolutely nothing but make me frustrated. It certainly won't help a 9 month old learn how to not aspirate. 

Hydrocephalus Awareness Month Post 3: Side Effects

The problem with hydrocephalus is that it affects people on such an individual level that there's no true list of side effects from it. There are things that are common amongst individuals affected with hydrocephalus, but people can range from completely high functioning (you'd never know they had hydrocephalus) to total brain damage. It all depends on so many factors, including how early the hydrocephalus was detected, what type of hydrocephalus they have, and what the body did before treatment intervened.

Some of the more common side effects are:

Vision problems, headaches, precocious (or early) puberty, seizures, poor hand/eye coordination, learning disabilities including nonverbal learning disabilities, difficulty understanding complex and abstract concepts, difficulties retrieving stored information, and spatial/perceptual disorders.

Because there's such a large range of side effects, hydrocephalus affects individuals all in a completely different way and on a totally individual level. Since there is no way to talk about all the different ways that hydrocephalus affects every person, I am going to tell you how hydrocephalus affects Nicholas.

The first reassuring thing we were ever told about Nicholas was when we met with his neurosurgeon while I was still pregnant with him. Being told that there's something wrong with your child's brain is terrifying. Meeting with a doctor who will do brain surgery on your child within days of being born? Even scarier. We literally had to trust this doctor with our child's life and we hadn't even met this child yet. Our heads were still spinning as we tried to research what hydrocephalus even was and here we were meeting with a man who would go inside this baby's head. He looked at the MRI and ultrasounds and told us that he was pleased to see something. Nicholas had a giant head. We were so confused. That was a good thing? The doctor told us it was a great thing. Because Nicholas's head was so large, it meant that his brain was growing along with his ventricles. When the head was developmentally normal and the ventricles are large, it means the ventricles are growing into the areas where the brain is and that typically means more brain damage than we would likely see in Nicholas.

I can't tell you how lucky we were that his head expanded. He has some issues because of the hydro, I'm not going to lie. But he's one of the lucky ones. The further we venture into the hydrocephalus community, the more we realize just how lucky this kid is. Obviously we don't know yet if he will have a learning disability or some sort of social disorder due to the hydrocephalus, but as of this moment, his issues are small and manageable.

Nicholas's side effects include a g-tube because of a weak swallow reflex. Weak. Not non-existent. That is a big distinction. He's already showing improvement with lots of speech therapy. The neurosurgery and pediatric team believe the weak swallow reflex is a result of some brain damage due to the hydrocephalus. That was so hard to hear. But he's improving. He had a swallow study on Monday and while he didn't "pass" (there's not really a pass/fail according to the speech therapist that administered it), we were told it was his strongest swallow study yet. That's in only 8 months of having a g-tube and therapy!

Nicholas is being stimulated by electric pulses (it's not painful - he actually falls asleep to this!) to help make his muscles in his neck stronger. This will hopefully strengthen his swallow.

Nicholas is also physically delayed. He has been rolling from back to tummy for about a month and just recently gained enough strength to roll from tummy to back. He will scoot a little bit while he's on his tummy using his legs to push. He just started to push his legs up when you hold him upright with his legs on the floor (i.e. he's starting to try to "stand" while you hold him) and he can hold his head up but not for extended periods of time. All of this is being addressed in occupational and physical therapy. We were told by our neurosurgeon at one time that it's not like it will be on his college application when he walked, and we agree with that. If he doesn't start walking until he's 2, he doesn't. It's not the end of the world.

Occupational therapy = playtime! Fun!

Cognitively, Nicholas appears to be on track, if not slightly advanced in some areas. He tracks with his eyes when you put something of interest in front of him. He reaches for toys and passes them back and forth between his hands. He rolls to his side to grab toys. He babbles and laughs (most often at something Zachary does - this kid sure adores his big brother) and smiles. He's a complete sweetheart and everyone who meets him falls in love.

Eating

You don't have to think about swallowing when you're doing it, you just do it. I would go so far as to say I have never even wondered how the mechanics of eating works. It just does. After Nicholas failed his swallow study and was placed on his NG tube, we had a discussion with the nurse practitioner and the neonatologist about our options.

The first thing they wanted to look at was getting Nicholas working with a speech therapist. We were confused by this - he's a newborn, what could a speech therapist do? Turns out they do a lot. They know how the mouth and tongue and neck muscles work, so they're the best provider to work on feeding issues. He would continue his NG feeding while they tried to work on making it safe to eat. 

The speech therapist was the first person to tell us that his failure to have the right mechanisms to safely eat was probably neurological due to the hydrocephalus. Because of the immense pressure on the brain and the fact that his brain was forced out of the way due to the huge ventricles, there was a very real possibility that the area of the brain that controlled swallowing was either under too much pressure still to function or had been damaged because of the hydrocephalus and had not developed at all or correctly. 

That was a hard realization. Until that point, hydrocephalus had just meant a big head and a brain surgery. We hadn't really considered the fact that there very well may be some brain damage. How can you? 

As speech therapy progressed and some progress was made but not being made very quickly, another option was brought to us. 

Nicholas was not allowed to leave the NICU until he could eat safely. The NICU did not consider eating via NG tube "safe". Certainly it is safe when it is being watched 24/7 by a trained medical professional but they didn't want a baby at home with an NG tube. Plus, the Bradys continued and the nurses suspected it was acid reflux coming up into his airway. An NG tube exasperates that because it allows an opening from the stomach back up the esophagus. Since he was still having Bradys even on an NG tube, it was absolutely not safe to have him home where we couldn't have him on monitors all the time. 

The next best option was to place a g-tube. This was a surgical procedure where a hole would be placed in his stomach and a button would be placed in that hole. We could attach a tube to the button and feed him directly into his stomach via either gravity or a pump. We didn't like the idea of him having to go through surgery again so soon. We felt at a loss. He couldn't go home right now because he couldn't eat safely but the best and fastest option to get him home was to make him have surgery again. It was a difficult place to be in as parents. Do we keep him in the hospital to keep working with the therapists? Or do we make him have surgery again and keep up with therapy as an outpatient so he can hopefully one day have the tube removed?

One step forward two steps back

People who had children in the NICU before me warned me that it was a roller coaster journey and that I should expect setbacks.

We had visited the NICU when I was still pregnant because one of Mike's co-workers is on the parent advisory board at the children's hospital and arranged it so that we would feel more comfortable when the time came. We were lucky in a way, that we knew before I gave birth that we would be in the NICU and could prepare as best as possible. We also knew that there was a possibility that both twins would have some NICU time since multiples like to come early. 

Before the twins were born, I was very confident that Nicholas would have his surgery, he would dutifully do his 7 day stint in the NICU and then he would be home in our arms. I had no idea of the journey we would face. 

Nicholas did have the surgery. And he was quite successful at his initial recovery. As I previously posted, he was extubated within hours of brain surgery, not days as we had been told. Even his nurses were impressed. Then he stopped urinating. And he had a Brady (bradycardia) every time he ate. A urologist was called in. A swallow study was ordered. 

The urination problem ended up being a seemingly small issue. The urologist believed it was a reaction to the morphine Nicholas was on to control the pain from his brain surgery so he was weaned off to just Tylenol. A CT scan and several ultrasounds later and the urologist determined that there were no bladder or kidney issues. 

The Bradys during eating ended up being a far more complex issue. And a far more dangerous one. During the swallow study, he was given a small amount (5 ml) of breast milk and was watched via x-Ray while he swallowed. Typically, if a baby passes this part, they move on to formula thickened with a small amount of rice cereal to make sure that the baby can swallow thicker substances as well. Nicholas failed the first part and it was immediately determined that it was unsafe for him to eat by mouth. He was immediately placed on NPO (nil per os or nothing by mouth) and an NG (nasogastric) tube was placed. 

The reason that Nicholas had a Brady (his heart rate basically dropped to dangerously low levels - sometimes as low as 10 beats per minute) every time he ate was that his tongue and neck muscles were not performing the actions they were supposed to so the milk he was taking in was sitting on top of the vocal chords and was taking the path of least resistance - down his airway. He was aspirating his milk, which could lead to big issues, including pneumonia. He was attempting to protect his airway, so he would stop breathing and his heart rate would plummet, causing his Brady.