Everybody Wins

For knowledge purposes, Zach's school is a member of the American Taekwondo Association (ATA) and the ATA has a program for small children called the Tiny Tigers, for ages 2-5. The Tiny Tigers learn the basics of martial arts - forms, weapons, board breaking - but are placed on an achievement system designed to keep them entertained and excited. Instead of earning a green belt tomorrow, Zach will (hopefully) earn his Ara belt. Ara is a turtle. The belts have the designs of the animals on them (the Ara belt looks like a turtle shell), and when the students advance, they earn the new belt, a t-shirt with the new animal on it, a headband to tie around their heads and a stuffed animal in the shape of the animal they learned. It's all really exciting and motivational for small kids.

Last week I overheard a discussion about the tournament at Zach's taekwondo school about how the medal systems were handled. It was discussed that it was inappropriate for all of the Tiny Tiger students to receive a medal for participating because in the real world you don't get rewarded every time, you have to earn your rewards, and only one person gets the job, not every applicant.

I actually agree with this to a certain extent. I think it's part of my job as a parent to not only teach my children to win gracefully but also learn how to lose. They will not win everything in their lives that they attempt. Someone else will get the job. They may not get into the college they want. They may go to a taekwondo tournament and not place. It happens. It's part of life. And they need to learn that.

I disagree, however, with the parent in question because I don't think that lesson needs to come at three years old. There are many many years in Zach's life for him to learn disappointment. Right now when he's just forming an opinion on this activity and right now when he's just learning how to practice to succeed, I think it is totally appropriate for him to be rewarded for his effort. I also think that it takes incredible bravery for a tiny little guy or gal (these kids are 2-5 years old remember) to stand up in front of a crowd of parents, other students, teachers from other schools, judges, and this weekend, leaders of the nationwide program and complete the things they have been practicing. It's loud in the room because there are hundreds of students on dozens of mats doing their competition. Parents are screaming in excitement. Judges are staring at them. And these kids get up there and do their very best. And I think that should be rewarded.

I also think it can only benefit these small people if they learn to taste success. There is a requirement that they actually get up and do the event. If they get nervous and back out, they don't medal just because they signed up. They have to actually get up and do it. If they actually do it and get rewarded for their success in standing up, it only makes them more likely to continue to practice and want to succeed in the future.

The reason that Mike and I like taekwondo (and this school in particular) so much is that it teaches the students to be good people first, leaders second, and winners third. It's not all about winning. It's about standing up for yourself and others, respecting yourself and others, and being someone who contributes positively to society. If that's not something to reward, then I don't know what is.

Besides, could you deny this cutie a medal???

On This Road

There's no way to describe the way you feel when the doctor tells you, "We see something wrong," while looking at an ultrasound. Your heart drops. You grasp your husband's hand, you stare at the grainy images they're showing you, trying to make sense of light and shadows. When those words "We see something wrong" includes the word brain, it gets really scary. A big long name for a condition we had never heard of. Hydrocephalus. Prognosis is typcially good. You cling to the word typically but live in fear of the atypical. Of the outliers. Of the ones who don't have a good prognosis. You vow to help him fight, to help him live the best life he can.

The day he's born. You barely see him before he's whisked off to be cared for by someone else. Your child being placed into someone else's arms. Someone else leaning in close and providing warmth. You're laying in a cold operating room with no answers. Your heart pounding, the worst case scenarios running through your head. Asking the doctors for answers and being told they have none yet. You'll get them they promise but not right now.

Standing in the NICU next to his bassinet and hearing "Not swallowing the way he's supposed to. Swallow reflex not working. Probably some damage to his brain. Hydrocephalus." Suddenly your vision of your future, and his, comes crashing down around you. The future you've always envisioned is raising happy children that leave and live lives with their own families, their own careers. Brain damage may change that future. Certainly you'll love him with everything you have forever, but that future may include him by your side for the rest of it. And what to do when your future ends but his keeps going? What happens then? Your resolve to fight slips a little. It's a scary time to hope, but what choice do you have? You start therapies. You agree to another surgery. You do everything the doctors and nurses tell you because it will help.

It's terrifying to go through. It breaks your heart because all you want is for your child to be happy. All you want your child to know is love and joy. And while you know that's not possible for his whole life, you'd really like to think it is possible in the first three weeks. And you feel guilty that your child has to know pain. And fear. And be poked and prodded. And x-rayed. And have ultrasounds. And have a PICC line placed. And you know that all of this is to help him. But he doesn't know that. He has no clue.

Then one day he does this.

And two days later he does this.

And you compare this.

And you start to feel sparks of true hope. And you start to allow yourself to consider that word typically again. Typically good prognosis. And you realize that what they told you in the NICU, "Nicholas hasn't written his story yet. He's writing it every day. There is nothing set in stone." is being proven to you by leaps and bounds. By a baby who doesn't know any better than to fight. And your resolve to help him fight that you thought you had lost? You realize it has been there the whole time and has become so ingrained that you don't have to think about it anymore. And you realize that nobody's future has been written yet and it is never never wrong to cling to hope.

4 Months Old

The twins are 4 months old today!

Emily has started rolling over from her tummy to her back and has started trying to roll back to tummy. She can sit up with the help of the Bumbo chair. She talks a lot, smiles all the time, and is an overall happy girl. She weighed in at 11 lbs 11 oz and 25 inches long. 25th percentile for height and 7th percentile for weight. Her pediatrician is very proud of her because she is measuring on the full term baby chart even though she was technically a preemie. 

Nicholas has started tummy time and is starting to lift his head up while on his tummy. He can hold his head up on his own for about 30 seconds and he is working very hard on improving his time. He also talks a lot, smiles a lot, and is head over heels in love with his big brother and pacifier. He hasn't had his height and weight check yet, but his last weight measurement was 12 lbs 13 oz. 

Life is starting to feel less overwhelming and I think we are all getting the hang of our new normal. 

Ain't Nothin' But a G-Tube baby...

Zachary has recently been enrolled in the Leadership program at his taekwondo studio. What that means is that he gets an extra class twice a week, gets to learn an extra two weapons that the Masters class students don't get to learn, and is welcome to join the XMA (Extreme Martial Arts) classes if he chooses. So, on Monday and Wednesday afternoons, we're at the taekwondo studio from 4p-5p instead of 4p-4:30p like we used to be.

This is important, because it means that I now have to set Nicholas up for his 5 p.m. feed at the studio. Not a big deal, I just take the pump with me in his tiny little backpack and hook him up right before Zach is done with his class. I put the kids in the car and hit start on the pump so Nicholas can eat while I drive home. We usually are sitting right next to Nicholas when he's feeding, but since he was eating in the car, I obviously couldn't watch him eat.

Wednesday evening when I got home, I carried the babies up the stairs to our condo, got inside, got Zach situated playing in the living room with some water to rehydrate and took the babies out of the car seat. As I took Nicholas in to the nursery to change his diaper, I noticed that his onesie around his g-tube was wet. Thought this was unusual so took a look. His diaper was very full, so I just figured he had overfilled his diaper and felt bad that his diaper had gotten so full that he had peed out of it. I also noticed that his g-tube pad was soaked, so I unsnapped it. It didn't look like urine on the pad, so I smelled it (the things parents do, huh?) and it was not urine. It was milk. I tried to remember why milk would be leaking from the g-tube site. Called Mike, he wasn't available so he didn't answer. Google led me to the Mic-key button website where I found a handy troubleshooting guide. Troubleshooting guide said the balloon may be loose (explanation in one moment) or there may be a large amount of gas build up in the stomach and the person may need to be vented.

I think I've explained before, but basically the Mic-key button is the tool through which we feed Nicholas. It is a tube that goes through the hole in Nicholas's stomach and abdomen. On the top it is flat and pretty much flush against his skin. There's a hole on one side to stick a slip tip syringe in and control the amount of water in the balloon and there's a hole that we attach the Mic-key extender to which then connects to the bag which is hooked to the pump and holds the milk. On the inside of Nicholas's stomach is the balloon. This is filled with water and basically holds the button so that it doesn't come out of Nicholas's stomach. It fails. It is made of latex and basically spends all day sitting in stomach acid and rubbing against the inside of the stomach. We are authorized one Mic-key button per month from insurance (I think...) but our surgeon told us we don't need to replace them until the balloon fails or something else goes wrong with the button.

When you "vent" the g-tube, you put in the extension (above against the green background) and attach a 60 ml syringe to the extension. You let the milk and gas come out of the tummy into the syringe and then you use gravity to push the milk back into the belly. I figured this was a likely place to start, so I got Nicholas situated on his pillow and started to attach the extension to the button. It was precisely that moment that the button fell out of Nicholas's stomach onto the pillow. We've been told several times by several doctors that fluid will take the path of least resistance. Know what the path of least resistance is when you've just put 4 oz into a baby's belly and then a hole appears? Yep...through that hole. Milk began shooting out of the hole that was now in Nicholas's stomach. I grabbed the button (noting that the balloon was basically empty) and shoved it back through the hole. Zach noticed something was happening and wandered over. I told him I needed some water and then realized that I can't ask my three year old to grab a slip tip syringe because well...he's three. I couldn't probably ask an adult to grab one unless they're in the medical field or had some experience with needing slip tip syringes, much less a three year old. Zach heard I needed water and ran away before I could amend my request. He came running back into the living room with the entire gallon of purified water, incredibly proud of himself. 

I told him he did a great job and asked him if he could stand there and hold the button in Nicholas's stomach while I grabbed what I needed. He said "Sure!" and put his finger on the button. He turned to watch something on the TV and his finger slipped off. Milk began shooting out of Nicholas's belly again (and I'm talking like the arterial spurts you see on TV - this was no slow dribble) and soaked poor Zach. He screamed and I shoved the button back into Nicholas's stomach and told Zach he had to hold it tight. I run to the kitchen to get a slip tip syringe (and a smaller bottle of water) and then to the nursery to grab a new button. Come back into the living room and not only is Zach still holding the Mic-key button in Nicholas's stomach but he's also holding Nicholas's hand and saying "It's okay Nicholas, Mommy will fix you." He saw me and said, "Nicholas was trying to grab his g-tube so I held his hand." This kid. I swear. He was meant to be Nicholas's big brother. He was not paying any mind to the fact that he was physically holding a button in his brother's stomach, or to the fact that he's currently covered in milk that had shot out of his brother's stomach. He was just doing what I asked and trying to calm his brother down while he did it.

I test the balloon of the new button (works yay!) and tell Zach thanks for his help. I pull the old button out and very quickly (milk shooting everywhere again!!!!) put the new button in. Take the slip tip syringe included in the new Mic-key button kit and fill the new balloon with water. The new button is sitting perfectly. It was at this precise moment that Mike calls me back. Tell him that Nicholas's button failed and a new button had been installed and oh by the way, his toddler is a rock star. Thank goodness I was still on maternity leave when we had the appointment with the surgeon to learn how to replace the button! 

Next order of business? Lots and lots of laundry (clothes, the pillow Nicholas was sitting on, the couch cushion the pillow was on...) and bathing two kids covered in milk. Yuck. Phew.

Never a dull moment around these parts. It was a little stressful on Wednesday, but now I'm laughing. And still totally impressed with Zachary.

Answers

Nearly a week after his discharge from the hospital, I am finally able to write about the stay. As previously written, we weren't exactly sure what was going on with Nicholas, but it was clear it was getting worse. Friday afternoon Mike noticed the hardness in his belly, brought him on an impromptu visit to the neurosurgeon's office, was advised to go across the street to the children's ER, and Nicholas was admitted.

Over the weekend very little happened which was incredibly frustrating. Certainly I understand it was a holiday weekend, but a hospital is a 24/7/365 atmosphere and if a physician is not prepared to work in such an environment then he or she should not have gone into the field they did. It is crazy to me that we had to wait until Nicholas's pediatrician was back Monday to start getting answers. It's also incredibly unfair to the patient. The longer he was in the hospital, the longer he was away from his family and the greater chance that he could be exposed to something, making him even more sick than he was.

They reduced his feeds to 30 ml/hour for a full 24 hours. This was to ensure that he received full nutrition without causing him the pain that the feeds seemed to cause. He tolerated this, though we didn't really care for the solution and his pediatrician agreed. They were treating the symptoms rather than determining the true cause of the problem.

Monday morning, the PA who works directly with the neurosurgeon we see came in and looked at Nicholas. They decided to turn his shunt from a pressure of 50 to a pressure of 60. This should lessen the drain of CSF from his brain and hopefully help to relieve some of the belly pain causing feed intolerance. Monday was the worst day. When I got to the hospital after work, I was told that Nicholas had moved from needing Tylenol every six hours to needing it every four hours. At around 8 p.m. as I was packing up Zachary and Emily to leave (I stayed long enough to meet the night nurse and then had to take the other kids home), Nicholas started crying and became inconsolable. His heart rate was skyrocketing and it was clear he was in pain. I got the nurse and a decision was made to give him a suppository since he hadn't had a bowel movement all day and also to give him 1 ml of ibuprofen. I was very worried because I've always been told that you shouldn't give an infant under six months of age ibuprofen but the nurse reassured me that it was such a small amount it shouldn't affect him at all. After the suppository (which worked fantastically) and the ibuprofen, Nicholas calmed back down and went back to sleep. It was only then that I felt comfortable leaving.

Tuesday, the pediatrician told Mike that we would have answers today. The neurosurgeon rounded on Nicholas's floor and saw Nicholas. He determined that he was going to back out of the care of Nicholas since the shunt appeared to be working correctly. Since the neurosurgeon's place of expertise is the brain and the placement of the shunt, it was appropriate for him to give up the lead role in Nicholas's care once he determined that his area of expertise was working properly. I was still incredibly angry and frustrated and ended up leaving work to go to the hospital early in the hopes of meeting with some of the physicians. I was prepared to go full mama bear. The pediatrician ordered a STAT belly ultrasound since the hard spot on Nicholas's belly hadn't been looked at since Friday when he had the ultrasound and CT scan. Nicholas's nurse from his pediatrician's office came up to the room to meet with us, and listen to my complaints. Ultrasound came up and then we waited for the results. Nicholas's nurse called the room to let us know the pediatrician was currently seeing an outpatient patient in clinic, but they would be up shortly. She called again about an hour later to let us know that he had been held up, but was on his way now. He was going to stop by radiology for the ultrasound results and also consult in the general surgeon who had placed Nicholas's g-tube and done the nissen but he was on his way to talk to me.

The ultrasound revealed that the spot was virtually unchanged but confirmed that it was, in fact, a pocket of cerebral spinal fluid in between the layers of the skin. The pediatrician told me that the surgeon had promised to stop by and talk to me before he left for the day. He asked the nurse to call the surgeon if he hadn't appeared by shift change at 7 p.m. The nurse assured me that she would call as soon as the pediatrician left and not make me wait until 7. As the pediatrician walked out of the room, he ran into the surgeon and the surgeon's resident, so all three came in and a 45 minute discussion ensued where I got all of my questions (and some I didn't think of) answered.

The surgeon assured me that the pocked of fluid was nothing to be worried about and that it was causing Nicholas absolutely no pain or discomfort. He told me it was like a room with one door and when Nicholas was upset or pushing for some other reason, the fluid all rushed into the room and none could get out because the door was occupied. He proved to me that there was no pain by pressing on the site to remove the fluid from the pocket. Nicholas didn't even whimper. He said that he didn't recommend surgery for the spot at this time because fluid has a funny way of being able to get around stitches. He said that Nicholas basically felt like he had the worst hangover he would ever experience because of the pressure change. He said he would be grouchy and irritable and likely not wanting to eat because he felt terrible. Pressure changes did this, and should he ever need the pressure changed again, we should expect it. I verified this information later with my employee who has hydrocephalus and a shunt and she agreed. She said whenever she's had pressure changes she has felt horrible for about a week. After speaking with the surgeon, I felt much better about not going forward with surgery and also with the ultimate outcome of this situation.

It was decided that we would try to reduce Nicholas's feeds from continuous to being fed over a period of two hours and off two hours. The pediatrician didn't want to send Nicholas home on continuous feeds if we didn't have to. Wednesday, they reduced him to feeding over two hours and Nicholas tolerated it like a champ. He also went the entire day without taking Tylenol once. I got a call from Mike in the early afternoon and he told me that their goal was to get Nicholas discharged home by 8 p.m. I was ecstatic. If he tolerated all of his feeds before then, they felt comfortable discharging him. When I got there he had just finished a feed, so his next feed would start at around 4:30 p.m. If he could tolerate that, he would go home. As 6:30 p.m. rolled around, the nurse came in with the discharge paperwork. I was packing the room as they unhooked him from the feed and by 7 p.m. we were saying goodbye to the nursing staff and heading towards the parking lot.

We have since moved his feeds from over 2 hours to over 1 hour. Before the shunt adjustement, he was eating over 30 minutes every four hours, so we're hoping to move the feeds back to that schedule soon. He has a follow up with his pediatrician tomorrow but is back to the happy and sweet baby that we have known until the shunt adjustment. He's talking and cooing again, smiling, kicking... Basically doing all the baby things he's supposed to be doing. And it's much nicer to be spending our time at home (or at Zach's taekwondo studio) rather than at the hospital.

If Nicholas has taught me anything, it's to expect the unexpected and to roll with the punches.

The Best Big Brother

Over the last week, I have let Zach fall asleep in our bed. The break from his routine and the fact that his bedtime was not constant was hard for a toddler to deal with and it was easier to just bring him into bed with me and let him fall asleep. Mike moved him into his own bed when he got home from work. 

Last night, we were curled up in bed, he was laying with his head on my shoulder and I was scrolling through Facebook. A picture of a child's stomach with a Mick-key button placed appeared in a g-tube group I'm part of. Zach said "Mom? Is that Nicholas's g-tube?" I stopped because I didn't even know he knew the word. Obviously he understands we feed Nicholas through the tube in his belly but I had no idea he knew it was called a g-tube. I told him it wasn't, it was another baby with a g-tube. He nodded and moved on. 

It made me reflect on what a phenomenal big brother he really is. When Nicholas was laying in his crib at the hospital, Zach would climb up on a chair and talk to him. I only overheard some of the conversations but I did hear him tell Nicholas not to be scared or not to be worried, his big brother was here. He loves to make funny faces at the babies to make them laugh. He helps out in therapy, getting Nicholas to track using toys (though Nicholas's favorite thing to track is his big brother). Zach was really made to be a big brother and he was made to be a big brother to a child with some medical complexities. He's never questioned the fact that Nicholas has a big head. He rolled with the punches that we feed Nicholas through a g-tube. During hospital visits as long as he has some toys and a TV, he's happy to hang out all day long, even if we don't think it's fair to him. 

His blind acceptance that this is just how Nicholas is has opened my eyes. What I saw as an inconvenience or a "disability" Zach just sees as how Nicholas eats. When I'm worried sick about how Nicholas is doing in the hospital, Zach just sees this as a new adventure. In the playroom on Nicholas's hospital floor, Zach didn't see "sick kids," he just saw new friends to play with. I hope he has this acceptance of "different" forever. I hope that his kindness and ability to see beyond the difference to the human inside follows him throughout his life. He is a truly exceptional three year old and I learn something from him every day. 

Happy Easter?

This weekend was hectic and frustrating, to say the least. It was a roller coaster of emotion as we thought we would get an answer and then someone else would be consulted in. It seemed that both the neurosurgery and general surgery staff members were certain the other was responsible for fixing whatever was wrong, and nobody wanted to make an official decision. Late Saturday night, Nicholas was moved to a different, much larger room on the same floor. We no longer feel like sardines, and Mike had an actual couch/bed to sleep on rather than a recliner. Still not comfortable, but slightly more.

Easter Sunday, I took Emily and Zachary to a friend's house for her annual Easter egg hunt and brunch. It was a nice break and Zach got to play with his friends and not be in a hospital for a few hours. While we were enjoying our egg hunt and brunch, the Orange County Sheriff's office came around the unit and brought the Easter bunny in to meet Nicholas. He got a stuffed bunny and they also left a coloring book and some crayons for Zach.

When we got back to the hospital, the speech therapist we had initially worked with when Nicholas was in the NICU was in the room working with him. Mike had spoken to the nurses and asked if we could get speech and occupational therapy involved in his care since he would be missing the appointments while in the hospital and it happened very quickly. The speech therapist was impressed with his improvement since leaving the hospital.

We didn't see anyone from the neurosurgeon or the general surgeon's office on Sunday and everything seemed to be at a standstill. The occupational therapist came in and also expressed happiness with the level of improvement Nicholas had since leaving the NICU. She said with the exception of his not being able to hold his head up consistently, he was advanced for his age.

Around 6 p.m. Nicholas started screaming and became inconsolable. His heart rate increased to the point of tachycardia - at one point, his heart rate was above 200. His nurse rushed in and gave him some more Tylenol. After about an hour he finally calmed down, though he continued to whimper until he fell asleep. His pain is clearly still not manageable and we told the night nurse when she came in that we needed to make sure the Tylenol stayed on board. Mike came home to sleep Sunday night since I was going back to work this morning and he needed to have the other two kids. We felt guilty leaving him there at the hospital, but his night nurse assured us she would check on him every two minutes if she needed to.

Yesterday, Nicholas's pediatrician came in to check on him and was very angry with the way that things had been handled over the weekend. He assured us that we would have at minimum a care plan today and was going to try and find us answers about why Nicholas was in so much pain and not tolerating his feeds. He was angry that the solution to his pain was not to figure out what was going on but to change the feeds to continuous. He felt that was treating the symptoms and not the problem. He consulted with the PA who works directly with the neurosurgeon who put Nicholas's shunt in and also the general surgery department. It was decided neurosurgery would take the lead since the issues started when the shunt was turned down.

The PA came in and they turned the shunt back up slightly to see if this would slow down the drain into his belly and relieve some of the pain. The pediatrician also ordered his feed to be turned back up slightly. Mike took Zach for some lunch and when he came back Nicholas was crying again. Mike asked the nurse what happened and she said "they turned his feed back up". The PA came back in and felt that the protrusion from the belly was larger again. 

When I got to the hospital after work, mike left to go to work and Nicholas was asleep. He woke up and started screaming again. It was time for his next Tylenol dose on the dot. The day nurse left and the night nurse came on. Nicholas's nurse from his pediatrician'so office texted Mike and told him that the neurosurgeon would be by in the morning to examine Nicholas and go forward in some direction. 

Around 7:30, I was packing up to leave and Nicholas became hysterical. I found his nurse and we were both worried because it had only been two hours since his last round of Tylenol. He couldn't have more but he was obviously in pain. She called the doctor and got permission for a one time small dose of ibuprofen. She also felt like he was straining when she picked him up so she called for a suppository. That must have been the issue. Once the suppository worked he calmed down immediately and fell asleep. I packed up the other two and we headed home. 

We, along with the pediatrician, will be demanding answers today from the neurosurgeon. And action. 

One Step Forward Two Steps Back

Well, as soon as I hit "Publish" on that last post, things changed. Of course. Because if we've learned anything from these almost 4 months of Nicholas's life, expect the unexpected.

After the shunt was turned down on Wednesday, Nicholas was immediately fussy. He wasn't tolerating his feeds very well. He just wasn't acting like himself. We put a call in to his nurse and she said this was typical behavior for someone who just had the pressure in his head changed. It's a big change and it makes them feel yucky for awhile. Basically, he could be agitated and he probably wasn't tolerating the feeds as well because his belly was full of the cerebral spinal fluid the shunt was rapidly draining from his brain. If it continued past the weekend, let them know.

We had previously noticed a slightly hard spot on Nicholas's belly right between the two incision spots (one from the shunt placement and the other from the g-tube placement and nissen). We had mentioned it to his pediatrician the previous Friday, and they agreed it was slightly abnormal but that they weren't concerned and we would keep an eye on it.

Friday, Nicholas had his speech and occupational therapies. We had noticed the spot on his belly had grown and was now protruding. Mike felt Nicholas's belly after therapy and discovered it was rock hard. Nicholas had been inconsolable all night Thursday night and most of Friday morning. Since the neurosurgeon was in the same office building as the therapy, Mike decided to head up to the fifth floor and see if they could take a brief look at him. Both Nicholas's neurosurgeon and his partner were in surgery, but the medical assistant came out and looked at Nicholas. She became very concerned about his belly and asked Mike to take Nicholas across the street to the emergency department immediately.

Mike got into the ER very quickly (our hospital has a separate children's ER) and I left work to come over as well. A CT scan, shunt series, and abdominal ultrasound was ordered. As soon as I got to the room, Mike and Nicholas left for radiology. I stayed in the room with Zach and Emily. The CT and shunt series came back normal and showed the shunt is continuing to work very well. The abdominal ultrasound showed what appeared to be a cyst in his belly and the decision was made to admit him to the hospital to see if the cyst could be drained. They also ordered a CT scan of his belly to get a better picture of what was going on.

Mike ended up staying Friday night with Nicholas while Emily, Zach, and I went home. Not much happened overnight except that he did not tolerate his feed at all. Mike only got 60 ml (half of his normal feed) in while he screamed. After midnight, he was not allowed to eat anything in preparation for the cyst to be drained in the morning.

This morning, we received a visit from the PA in the neurosurgeon's office. She felt confident that the shunt was not the root cause of the issue and wanted to consult in general surgery to see if they felt the catheter of the shunt that lays in Nicholas's belly needed repositioning or if they felt the problem was something else. After awhile, the surgery resident came in and told us that after further review of the belly CT, they felt it was a pocket of CSF that had gotten stuck and appeared to be subcutaneous and therefore shouldn't be causing pain or the intolerance of feeds. He stated that his gut indicated that it was something else and he wanted to get the surgeon to review the tests and they would be back, hopefully with a plan. We were prepared that he may be scheduled for an exploratory laparascopy.

The surgeon came in and examined Nicholas. He agreed that the spot on his belly was likely not the cause of the pain and feed intolerance and ordered an upper GI scan to make sure that there wasn't a blockage somewhere in his digestive system. Nicholas was whisked away to radiology again. He was given barium with contrast through his g-tube and pictures were taken. Then they waited a half hour to complete some more pictures - they were trying to see how well the contrast moved through his digestive system. The answer came back that he has no obstructions in his digestive system. But...we still don't know what is causing the issue.

When he came back, his nurse came in to complete vitals and asked us if we had ever noticed his pupils were different sizes. We had not, and were pretty sure if they were, some medical professional would have noticed by now, as many as he had seen. The floor attending was called in to look and confirmed that one pupil was significantly larger than the other. The neurosurgeon's office was paged again and he was placed on full monitors. They weren't overly concerned, because he had no other symptoms that indicated potential neurological problems, but they wanted to watch him on full monitors just in case.

We asked about getting him fed, because at this point it had been 18 hours since he last ate. The nurse asked the floor attending who said we had to talk to the neurosurgeon who said that we had to talk to the general surgeon. The general surgeon approved him for feeds but suggested that we slow his feeds down from 4 ounces every four hours to a very slow continuous feed over 24 hours. We said okay, sounds good to us and the nurse laughed. She said that order has to come from his pediatrician so we have to page them. Finally, he was started on a continuous feed of 30 ml/hour for 24 hours.

That's where we stand right now. We don't know what's wrong with him, though there have been plenty of ideas tossed around, from a kink in the shunt catheter to the idea that perhaps the shunt catheter has grown into the scar tissue from the surgeries he's had. The honest answer is that he will likely require surgery again for them to get in there and figure out what's wrong. And that sucks. That sucks so bad for our little guy. It sucks that he's had to endure so much in the short 4 months he's been here. The good news is he's little enough that though the memories of this will be forever burned into our minds, he won't ever remember this. Hopefully we'll have figured out the big issues by the time he is old enough to remember and hospital stays and surgeries and radiology will be something he knows very little about.

I'll update when we know more.

It's Not Brain Surgery

Nicholas has a big head. We've established that. He also recently has a cone shaped head. We've talked to his pediatrician about it and have been trying to figure out what's going on and how to fix it.

Because Nicholas wasn't cleared for tummy time (freshly placed g-tube probably not too comfortable), the thought was that his head was flattening out because he spends a large amount of time lying on his back. Since fluid is easier to move around than brain matter, the thought was that the bones of the skull may have shifted. We were first trying to rectify the situation by positioning his head different ways while he slept or laid on the floor in his play mat or on his pillow on the couch. That didn't seem to help. Then he was cleared for tummy time. He haaaaaaaaaaaaaaaates tummy time. It is like a nuclear war happening here when Nicholas is doing tummy time. The next thought was that with the addition of tummy time and the re-positioning of his head, we will be able to get the head to a "normal" shape. 

None of those ideas worked and his cone head seemed here to stay. At his last pediatrician appointment, the doctor suggested it was time to meet back up with the neurosurgeon who had placed the shunt and see if he wanted to give Nicholas a helmet to help re-shape his head. We had been prepared for this since before birth, so it wasn't really a surprise for us. We had originally been told they would look at putting him in a helmet after six months, so it made us a little nervous that they were looking already, but if it's what is best for Nicholas, we will move forward with it.

The neurosurgeon required a CT scan to see him about the helmet, and since he was going into radiology anyway, the neurosurgeon requested a shunt series as well. He had both the CT scan and the shunt series Monday. Mike took him in at 2 p.m. and the nurse at Nicholas's pediatrician arranged for a child life specialist to go back into radiology with him since I was at work and Mike had to stay in the waiting room with Emily and Zachary. I met Mike at the hospital after I got off work at 3, we traded cars so he could go to work and I have the car with the car seats, and I went back into the radiology department to wait for Nicholas to come back.

Wednesday, Nicholas saw his neurosurgeon. The neurosurgeon told Mike that everything on his CT scan looked fantastic and he doesn't think that Nicholas needs a helmet at this point. The reason that Nicholas's head is "coning out" is that his brain is growing (yay!) and the shunt isn't removing the cerebral spinal fluid fast enough, so the CSF is being pushed out anywhere it can go - and that just happens to be out of the soft spot in the back of Nicholas's head, creating the cone shape. The good news is this is a fairly easy problem to rectify...we hope. We have found that sometimes things that are "fairly easy to rectify" cause Nicholas to have other issues.

The way the shunt works is that it is set to detect the pressure in Nicholas's brain. When the shunt detects that the brain has gone above that set pressure, it turns on and drains fluid until the pressure is back under what the shunt is set to and then the shunt turns off. When the shunt is set, the lower the number on the shunt the more it will drain. Basically, adults typically have a pressure of 100. That was Nicholas's initial setting. They set his shunt very conservatively initially because they wanted to remove CSF but they didn't want to do it too fast and cause the brain to pull away from the skull and cause a brain bleed. After a few weeks of draining at a pressure of 100, they lowered his pressure to 70, which is a typical pressure in infants. His shunt has been at this pressure since. On Wednesday, they turned his shunt down to 50. They warned us he will have so much pee as his shunt drains and also that he may be irritable. Hopefully this will fix the issue of the CSF oversupply.