7 Years Ago

Seven years ago, I stood in a room with my sisters, my mom, and my two best friends. I was surrounded by excitement. A hairdresser appeared and with what seemed incredible speed, got five ladies' hair done up. Bridesmaid dresses donned. A garter. A big white dress. Photographer taking picture after picture. A walk down an aisle with my dad at my side to meet you. We stared into each other's eyes and proclaimed our vows to each other. We promised to love each other forever. We promised to stand next to each other through good times and bad, sick times and healthy. We were so in love. We were so excited to start our life together. We went to a party and ate cake, delicious food we had sampled months ago, danced all night long, and then the next day we were off to an exotic destination and just enjoyed being married.

Seven years ago if you would have told me that our vows would be put to the test over and over,
I wouldn't have believed you. If you would have told me that being married meant you sat by my side while I threw up everything I ate for four months straight through two pregnancies I would have thought how unromatic that was. Seven years ago if you'd have told me that sometimes the most kind and romantic thing we can do for each other is let each other sleep in on a Saturday and keep the kids quiet so you don't wake up, I would have laughed at you. Seven years ago I would have never understood how much it meant to have you as my rock when we were told they couldn't find the heartbeat. Or when they said something is wrong with Twin B. You don't think about those things on your wedding day.

Seven years ago if you would have told me that I would feel more joy at hearing that the pregnancy after the miscarriage was "a happy, healthy, normal pregnancy" than I knew I could feel, I would have scoffed. Seven years ago I couldn't have understood just how difficult it would be to be infertile and to realize it's a journey and a battle that we had to go through together.

Seven years ago I would never have understood just how much joy and love there is in sitting at home together on a weekend night and cuddling while watching TV. Listening to the sound of our kids breathing while they sleep. Knowing that the fact that we fell in love brought these three fantastic humans into this world. Seven years ago, I knew I wanted kids, but I never realized just how much more I would love you seeing you as a father. Watching you make silly faces at Emily, or hold Nicholas in the hospital to keep him from being scared. Watching the pride beam from your face as Zach stands up in front of a crowd of people at his taekwondo tournament and does a great job. Seven years ago I loved you deeply. Seven years later, I love you so much more.

I never understood exactly what shaped a marriage. It's the highest highs, the lowests lows, and weathering them together. It's being frustrated by something you do and then choosing to forgive and move on. It's laughing together, fighting and making up, creating a world where our children and our marriage can thrive, and sometimes, just hanging on by a thread. It's being a rock when the other is weak, and being comfortable to be vulnerable enough to be weak when you need to be. It's learning how to communicate, and learning how to say I'm sorry. It's holding hands in the car or being the one to get up with a crying baby in the middle of the night so the other can sleep. It's inside jokes. It's standing with one another against difficulties, it's weathering the storms by huddling together.

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.