Whoops I Did it Again

Things have been absolutely insane around our household and I have been terribly terribly remiss in updating. I apologize and promise that it's been mostly good news that kept me away!

In mid-August, I started my new job. While it's a big change from what I'm used to, it's really a fantastic company to work for and it's great to feel challenged to learn something new. With the new job came many new things for our family - for the first time the twins are in daycare. We found a school that specializes in special needs children but also accepts "typical" children, and luckily they had space for both Emily and Nicholas! We've seen leaps and bounds of development from Emily who is now trying very hard to talk. She's doing very well, and is even attempting sentences now! Nicholas is trying to emulate the older kids (they are in a classroom for 18 months to 3 years old and are the youngest of the group), and we've noticed him verbalizing a significant amount also, along with working on ways to get from point A to point B more efficiently and voluntarily going to a standing position.

Also with the change, Mike was able to move back to a day shift at work which has been amazing for our family. We can actually eat dinner together most evenings (he still works news - breaking stories still happen), he gets to be more involved in Zachary's taekwondo, and we actually feel like a family again.

Things have been pretty quiet here, albeit incredibly busy with life, but nothing out of the ordinary until recently. We had noticed that Nicholas's g-tube was leaking a little. We mentioned it to his pediatrician at his 18 month check up and they told us that the button may be sized a tad small since they've never resized since he had his g-tube placed at 3 weeks old, but that we would keep an eye on it. A brief lesson in g-tube sizing: Nicholas was wearing a 14 french 0.8. That means the part of the tube that actually goes through his abdominal wall into his stomach was 14 french (a form of measurement) around and 0.8 mm long. We noticed the leaking getting worse, so we went ahead and changed the tube. It continued to get worse until almost every feed, he would leak so significantly that his entire shirt would be soaked and smell of stomach acid.

On a Sunday morning, we noticed that his belly around his g-tube site was red and raw. He was screaming in pain every time we fed him. We called the on-call pediatrician who told us that the children's hospital emergency physicians are all trained on g-tube resizing so we should take him to the emergency room to have it looked at. He also mentioned that if we didn't feel comfortable with the emergency room physicians resizing the button, the general surgeon who placed Nicholas's tube originally was actually on call and in the hospital that day. Mike whisked off to the emergency room for what we figured would be an easy fix. After several hours (things do not move quickly in hospitals), they were home. Nicholas had a freshly placed 14 french 1.2 button. He was past due for a feed, so we set him up and started the feed. Nicholas immediately began screaming in pain and the hole where the g-tube button is began leaking so badly that we were actually unsure if any of the feed was even making it into his stomach. Mike packed Nicholas up and took him back to the ER. The surgical resident came down and looked at his g-tube. He decided that Nicholas appeared to be between sizes - he thought a 14 french 1.0 would be too small but a 14 french 1.2 was just slightly too big. Unfortunately, there is no such thing as a 14 french 1.1. He left the decision up to us, but suggested we stay with the 1.2 because scar tissue would form and until then, we could pack the site with gauze to kind of build up the distance and hopefully stem the leaking. He was wary of switching the tube again simply because Nicholas was already in so much pain that he didn't want to add to it.

We took his suggestion and called the surgeon's office for a follow up visit. We were able to sneak into an appointment on Wednesday and the surgeon ended up changing the tube at that visit back down to a 14 french 1.0. At that time, Nicholas was diagnosed with a chemical burn from the stomach acid leaking out of the g-tube site. He was prescribed a topical ointment and we were told to attempt to let the site air dry as much as possible.

By Friday afternoon, we thought things were getting better. As I sat in the chairs at Zach's taekwondo class, Nicholas became very agitated. I was holding him, trying to calm him down, and I realized his onesie was soaked through again. I took him to the bathroom to try and get some cool water on his belly until we could get home and I could change him and fix the dressings and that's when I realized that blood was pouring out of his g-tube site from beneath the button. I asked the director of the school if Zach could stay there (he had demo team practice later that evening) until Mike could get off work and meet him there, grabbed Emily and Nicholas and headed to the hospital. Zach was treated very well while I was off - hanging out with his favorite instructors and fed delicious food from a mom of his friend who graciously took it upon herself to run to Publix and pick up some food for him.

The ER doctors consulted in the surgical team again who decided they would like to see an X-ray just to make sure that at some point during all the button changes over the past week that his stomach hadn't disconnected from the abdominal wall and that we had just been feeding his abdominal cavity for a week. This can happen early in the g-tube placement process as scar tissue hasn't formed to adhere the stomach to the abdominal wall yet, but is a highly unlikely possibility after having had the tube for almost 2 years, however, we agreed with the surgical team - better safe than sorry.

The X-ray found that there to be no problem with the placement of the tube and it was decided that the bleeding was from irritation of the chemical burn. I had made my way back to taekwondo to pick Zachary up from demo team practice (and brought Emily back with me), so Mike was sent home with wound care instructions. The tube is still leaking somewhat, thought it's not nearly as bad as it was during this time. We've gotten the worst of the chemical burn under control, though it's still healing. The best conclusion we can come to is that it was a combination of things - the initial tube too small, transferred into a tube that was two big and allowed for significant leakage over three days before it was switched back out. Beyond that, he's currently getting his molars, so he's had more spit to swallow and because molars really suck to get, he's been crying more frequently than he normally does. Crying causes him to bear down, and may be contributing to the leaking.

Hopefully this will eventually just be a blip on the radar pretty soon. I feel like we're getting close to the end, but it's been a frustrating process.

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.

The Second Night Home

Mike had gone back to work before Nicholas came home, but we had had family with us so I was getting help with Zach and Emily while he worked.

My mom was still in town the second night home and thank goodness she was. We put Zach to bed, watched some tv while I got Nicholas his feed and nursed Emily. Just before 11, I moved the babies to the pack and play in the bedroom, packed up the IV pole with the feeding pump attached and my mom and I said goodnight. As soon as I got into the room and started Nicholas's overnight feed, both babies started to cry. I tried calming them down but they appeared to be hearing each other and winding each other up. I wasn't sure how to hold both babies and I couldn't get either to stop crying. Getting a little panicked, I called out for help from my mom. She came in and took Emily to the other room. That seemed to do the trick and I was able to pick up Nicholas and bounce him enough to calm him down. I was laying him down in the pack and play (we have a twin pack and play with two bassinets on top) when I heard a distinctive POP. I had no idea what it was but Nicholas started screaming. 

I looked down and realized that Nicholas's feed was now spilling out onto my bedroom floor. Through the Mic-key button that I had just pulled out of his stomach. I began to panic and tried to desperately remember the instructions that the nurses had told me in the hospital. 

When (not if, when) his button comes out, you need to find something to fill the hole (and a red rubber catheter was placed in our hands) and get Nicholas to the ER. The hole can close within an hour so as soon as you notice it, get to the ER. 

I started screaming to my mom to find the red thing, I needed the red thing. My mom, still holding a no longer sleeping Emily and not sure what exactly I was freaking out about, started searching through the bags we had brought home from the hospital. I called Mike and he couldn't understand what I was screaming at him at first. He finally got me to calm down enough to tell me where to find the rubber catheter. I had to put the catheter through the hole where his button was, taped it down, placed him in the car seat, told my mom where to find a bottle for Emily if she woke up before we came back, and was driving to the hospital we had just left the day before. 

I was sure the hospital would judge me for being totally unable to care for my son for even one day. The doctor and nurses were actually incredibly nice and told me I was not the first mother to pull out the button and would certainly not be the last. Mike's co-worker who has a son with a j-tube (similar to a g-tube but in the intestines rather than the stomach) told me that you weren't a tubie parent until you've accidentally pulled out the button. 

Turns out there was a leak in the balloon holding the button in, so we had to wait for another button from the hospital. Once they replaced it, they had to inject contrast through the button and make sure that the button had gone through both the abdominal wall and the stomach since scar tissue to attach the stomach to the abdominal wall hadn't developed yet. 

It seems that life with Nicholas will always be interesting and sometimes may be a little scary. 

More Prep

The day before Nicholas's discharge date we walked into his room to find an IV in his head. My heart stopped. Why was there an IV in his head? I was sure that his discharge date had been pushed back and also a little upset that something had happened to him and nobody had called us.

We had one of our two favorite nurses on that day but apparently she was at lunch when we walked in. Our other favorite nurse ran in to explain that he was slightly anemic and that the neonatologist had ordered a blood transfusion in order to keep his discharge date and to keep us from running into any problems. The order for the blood had been put in and as soon as our nurse returned from lunch he would get his transfusion. I was so relieved that his discharge date was still a go and that nothing was seriously wrong. 

Our nurse returned, the blood transfusion started, and the nurse and I got busy filling out the list of things she was supposed to teach us before we were discharged. I had to prove I could put his Mic-key extension tube into the button to feed him. Then I had to prove I could remove it when he was done. I had to prove I could change his diaper. That I knew how to administer medication via his g-tube. That I knew what vitamins to give him. That I knew how to clear his nose and throat using the bulb. That I was comfortable moving him. That I knew the signs of illness and what to do if I detected them. 

As we began to wrap up for the night, I kissed Nicholas goodbye and hoped against hope that tonight would be the last night I went home without him. 

Surgery x2 Part 2

The day of surgery came. We were told that he would be in surgery around noon. We got to the hospital early and found an extremely pissed off baby. He had officially been off food since midnight the night before because of the surgery. We had a nurse that we had never had before and if we couldn't have our "regular" nurses, this one was amazing. She was very calm with Nicholas and funny with us. Nicholas was angry and screaming. A pacifier was not acceptable. He wanted food in his belly.

The nurse told us she had to place an IV line because the NICU didn't want the anesthesiologist to touch their PICC line. They had worked too hard to get that PICC in. She tried to place the IV in his hand and the line immediately collapsed. His hand was just too small. I had helped her hold him down while she placed the IV in his hand but when she said she was going to place the IV in his head, I had to back away. Mike and I switched spots and I held Emily. The IV was placed in his head and then we waited. And waited. And waited. The surgeon stopped by briefly with his resident and explained again what he was going to do and what to expect. He asked if we had any questions and was gone as soon as we said no.

Suddenly, at around 12:30, transport showed up to take Nicholas to surgery. Our nurse was furious that she hadn't been notified so she could have him ready. She busied herself getting him ready to move and we kissed Nicholas. Mike was going to walk down with him and my sister, Emily, Zachary, and I were going to go get some food from the cafeteria while we waited. We were told it would probably be a couple of hours and then he would return to his room. They didn't know if he would still be intubated when he came back up, so we would just have to wait and see.

My sister, Mike, Emily, Zachary and I all returned to Nicholas's room and waited for him to come back. Emily slept. Zachary played games on our phones. My sister, Mike, and I just waited. Our nurse stopped by a few times with updates (he's out of surgery!) but mostly we just waited. And suddenly he was there. Groggy but not intubated. Just a nasal cannula with oxygen. Pretty good. He now had a hole in his belly with a Mic-key button covering it. The button was covered with tape and the extension tube that we could eventually remove after every feeding was taped in with the button. The button is permanent while he has the g-tube. It is what keeps the stomach adhered to the abdominal wall and keeps the hole open so we can continue feeding him. 

The surgeon appeared and said that the surgery had gone very well. They placed the g-tube (on the opposite side of the abdomen than where the catheter from his shunt drains), completed the nissen, completed the circumcision and oh by the way, found a surprise. Ummmm. A surprise? That's a scary term coming from your newborn's surgeon. They had found an inguinal hernia while they were in his abdominal cavity and had gone ahead and repaired it. An inguinal hernia is a hole where the baby's testicles dropped that should have closed. Probably due to his prematurity, Nicholas's had remained open. This could cause issues because his intestines could drop into his testicles, twist, and he would be in for pretty major surgery. As it was, his testicles were quite large because the extra fluid draining from his ventricles was draining through the hole. Lucky the surgeon found it. If they would have found it after surgery and before discharge, he would have had to have a third surgery. If we were discharged and his intestines dropped, we could be looking at an emergency situation. 

Now we waited for Nicholas to get the all clear to start eating to see if he would tolerate his feeds via g-tube. We were getting closer to a discharge date as long as everything worked.