The Others

We do have more children than just Nicholas. His needs are so present that sometimes the others get lost in the shuffle of updates.

Emily is doing fantastic! She is literally the easiest baby ever. (Mike wants me to remind you that she's easy for me - he doesn't think she's as easy). She only ever cries (for me Mike says) when she's hungry. Otherwise, she's perfectly happy to just keep watching the world. She doesn't mind tummy time for a few minutes (10 seems to be her tops so far) and LOVES her Bumbo seat.

We pierced her ears this past weekend and she only cried while it was actually happening. I think she was more upset that I had to hold her still than actually getting her ears pierced. She loves being held but is just as happy to lay on her play mat and make the toys above her move. She loves to smile and we're waiting for her first giggle.

At last check, she weighed in at 10 pounds exactly. She was six pounds one ounce at birth so that's quite a good gain amount in three months! She has reflux but we give her Zantac twice daily and that seems to clear it up enough that she isn't bothered by it. She is a happy spitter upper (as her doctor says). She adores her big brother. When he's in the room she's watching him. When he asks to hold her, she sits quietly and lets him hold her. She gets smiley when he gives her hugs. She also loves her little brother. She's content to lay next to him and watch him. When he gets fussy, she watches him. She's mischievous in that she likes to pull Nicholas's pacifier out of his mouth - an event that triggers a world shaking meltdown.

Zachary is already planning his fourth birthday party (which will happen in Colorado this year - thanks Auntie Becky for getting married in Colorado! Zachary is so excited to share his birthday with his Colorado peeps this year!). So far, he's planning a Transformers/Super Hero/Ninja Turtles/Cars/Nicholas birthday party. We'll narrow down the theme as it gets closer.

He is learning soccer skills at an indoor soccer facility local to us and just enrolled in Taekwando. He absolutely loves Taekwando and is displaying some fantastic skills. He has his first tournament this weekend and is really excited.

You're So Strong!

If "You've got your hands full!" is the most common thing we hear, "You're so strong!" or "I don't know how you do it!" are not very far behind. I take a step back and look at my family to see what they see.

The three year old? Certainly a three year old is a force to be reckoned with. You've never understood the term threenager until you've had one. Some days everything is awesome (does anyone else sing that phrase? Thanks Lego Movie!) and some days the world is ending because we used the wrong color plate or his favorite cartoon is on or the milk is too white. Yep. Those days take some inner reserve. 

The twins? Well they can be overwhelming. Who do you comfort first when they're both crying and only one parent is around? What about when they both need a bath? What if you're changing a diaper and the other one starts melting down?

A medically special needs child? Yeah this one can be tough too, though at this point we have everything about his care down to almost a science that it's a little less overwhelming. Except for times that he throws curve balls at us. Like the other night when we were at dinner and Mike was gravity feeding him and Nicholas was NOT happy and was having such a melt down that somehow his milk actually came out his nose. We aren't sure how that happened. His nissen is supposed to prevent that. He must have exerted some serious force to bypass that. 

So yeah. I guess we have three pretty overwhelming situations all squashed together into one family. But...it's our family. And really, what choice to we have BUT to do it? We can't stop caring for them. We can't not provide for their needs. So we just figure out ways that work for us and keep on keeping on. 

I laugh when I hear that. I appreciate the compliment it implies, but then I think about the families I used to think that about. Another family with a toddler and multiples (if only I could have seen the future!). A family with a toddler with cancer fighting for his life. Another family with more kids than I thought I wanted. And now I know. Yes, it takes great inner reserves of strength and patience but when it's your life you don't really notice yourself pulling up your bootstraps, you just DO IT. And I know that, faced with whatever difficulties lie ahead, any of my friends or family would do the very same thing. Just roll with the punches and figure out what to do next. It's what any good parent does. 

An Open Letter to Hydrocephalus

I follow a page on Facebook called The Mighty. It's a haven for special needs parents to vent or cry or share success. This page publishes blog postings from special needs parents all over, and I was turned onto it after a friend of mine had her blog posting published. She shared the page and I followed. (You can find Laurie's blog about her amazing daughter here).

The Mighty has challenged it's readers to write an open letter to the disease, disability, condition, or disorder that afflicts the reader or the reader's child (family member, friend, etc.). I have been reading along all month and have finally decided to give it a go.

Dear Hydrocephalus,

I didn't know you before you crept into our lives. You are one of the most common congenital conditions but you are not well publicized. When the doctor said our son had hydrocephalus, we had to turn to Google to even figure out what that meant.

You stole happy moments from our miracle pregnancy. Because I was already high risk, I got more ultrasounds than I probably truly needed, but every ultrasound turned to worry as we watched you take over the ventricles in our son's brain. Every ultrasound his ventricles were larger than the last and every time we left the doctor's office we contemplated how much damage was being done to his precious brain.

You stole bonding time from us when Nicholas was born. He was taken immediately from me after delivery - I didn't even get to touch him before he was whisked away because the size of his head upon birth was so troubling. You gave him a head the size of a one year old when he was born - and he was a month early. We didn't get to hold him for a full week after he was born because of you. Because you required brain surgery during his second day of life and because his veins were too tiny for a standard PICC line, an umbilical artery was placed and it was dangerous for us to hold him lest they lose that line. You stole more bonding by creating an issue where he can't swallow properly and aspirates his food. This required a second surgery and a longer NICU stay.

You have stolen time from our family, requiring therapy and multiple doctor appointments weekly. You have stolen time by requiring Nicholas to feed by tube, a process that takes longer than if we just gave him a bottle or if he could breastfeed.

But you have given back to us as well. You have shown both Mike and I that we are stronger than we ever believed we could be. You have shown us that we have raised, thus far, a remarkable older brother who loves his hydrocephalus/tubie brother more than words can say. You have shown us that the world is full of amazing and kind people who say prayers for us in our darkest hours, who are ready, willing, and able to step to the plate to help us.

And you showed us the most important thing of all. You showed us an indescribably brave little fighter. He fought to get here (twins with only one good follicle that month???) and he is fighting every day for everything. He's graduated to a lower level of occupational therapy because he is meeting his age appropriate milestones. He's not passed his swallow study yet but has shown so much improvement that we think he may pass soon. He is silly and sweet and cuddly. Everyone who meets him falls instantly in love. He's a fantastic addition to this Earth, and hydrocephalus, you can never take that away.

From,
A hydrocephalus/tubie mom

Your Hands Are Full

It happens every time we are out. People are inevitably drawn to a twin stroller. They lean in and ooooo and ahhhh. "Are they twins?" They are. "A boy and a girl?" Yes. Their eyes then fall on the 3 year old hovering protectively nearby. "Oh my goodness! Your hands are full!"

We nod our agreement, smile, and make our way on. Because yes, our hands are so very full. And we can't explain just how full. They don't know that we hook our son up to a tube to feed him six times a day. That we watch the contents of his stomach bubble up into a syringe after we've fed him in order to remove gas from his stomach. That we watch obsessively for signs of abnormal behavior because a baby can't verbalize that his shunt is failing. That we are at therapy appointments three of the five business days of the week in order to help our son learn to swallow without aspirating, learn to hold his heavy head up on his own, learn to use his motor skills. 

They also don't know what it feels like to watch your three year old touch his brother's head and coo how cute he is and that he loves him. To see that unconditional love displayed. To watch that three year old take hospital visits and therapy appointments in stride and accept it as part of being this little boy's big brother. To lay the twins down next to each other and watch them gravitate towards each other. To link arms as they lay on a blanket next to each other. To watch each of them hit their milestones, your son meeting some of them before his non-special needs sister and to swell with pride at the fight you see in him. 

Yes. Our hands are full. And aren't we so lucky they are?

I Forgot To Mom

What's your first instinct when your baby starts to cry? I know with Zach and with Emily, it's to pick them up. Hold them close. Try to comfort them. Why is that so hard with Nicholas? I spend so much time with him working on getting him fed (learned the g-tube inside and out - can even change it out myself with no medical personnel intervention now), getting him ready for therapy (speech, occupational and soon physical - though to be fair, Mike takes on the brunt of this responsibility), making sure he lays on different sides to even out his head shape and to keep his torticollis at a minimum that when he acts like a normal baby, sometimes I freeze.

He cries and I try to give him a pacifier. That doesn't work and I get frustrated. Why doesn't he want his pacifier? What's wrong? Is it gas? Is it a shunt failure? Is he hungry and I don't know his queues because he doesn't know them? Is he bored? Uncomfortable? These are all valid questions to ask anytime a baby is crying but the major difference is that when I get so frustrated and so lost about why he's crying, I FORGET TO MOM. Pick. Up. The. Baby.

I get so lost in his "special needs" that I forget that he's a baby. And babies love and crave to be held. Babies sometimes just want to be in mom's (or dad's) arms. Babies sometimes just want to cradle up and hear your heartbeat. Babies sometimes just need to feel your breath on their face as you kiss them. Babies sometimes just want you.

I don't know why it's so hard to remember to just follow my mom instincts. Is it because he has special needs? I'm always searching for something beyond just that he's a baby, but I have to remember to just be a mom to a baby sometimes. Look for the extras, yes, we've caught issues that way before, but sometimes, just be a mom. Just hold him. Just love him.

Two Months!

Time flies when you're having fun! Nicholas and Emily are both two months old!

Emily is 8 lbs 14 oz and 22 inches. 

Nicholas is 9 lbs 4 oz and 21.5 inches. Growing like crazy! 

Back at the hospital

Nicholas has a different pediatrician than his brother and sister. Because of his needs, he is seen by a doctor that speciizes in high needs kids and is also directly connected to the hospital. We have a nurse that we can contact directly (we text her frequently enough to feel slightly guilty though she promises that it's always welcome), and receive a very high level of care. Not that Zachary and Emily's pediatrician doesn't provide fantastic care, Nicholas's is just so much more specialized.

He had had a bad night. Fussing through his feed, moaning the whole night. Mike had stopped his continuous overnight feed more than once to vent him, hoping some of his discomfort was due to being gassy. Because of the nissen, it was nearly impossible for Nicholas to burp his gas out. Instead, we connect an empty syringe to his extension tube (which is connected to his button) and the gas escapes that way. It comes with Nicholas pushing the contents of his stomach into the syringe, which we then let gravity drain back into his stomach. 

Each time he was vented, significant amounts of mucous came with it. In the morning, we decided to get in touch with his nurse to find out what she thought. They decided to have him come into the clinic to take a look at him. Mike packed him up, I stayed home with Zachary and Emily and off they went. 

After about an hour of being gone, Mike called me. They had decided to admit him to the pediatric floor. Apparently when they measured his head circumference, it had increased by 2 cm. That, combined with the fussiness, and the apparent discomfort was concerning. They were worried that his shunt had failed and the pressure was increasing in his brain again as cerebral spinal fluid was unable to leave. A CT scan was immediately ordered. And now we wait. 

The next morning, the PA from the neurosurgeon's office along with Nicholas's pediatrician reviewed the CT scan. The ventricles were smaller than they had ever been and more brain was visible than they had ever seen before. When the ventricles are enlarged, they push the brain out of the way. This was actually a very encouraging result. 

A shunt series was ordered. This is a series of x-Rays that look at the shunt from top to bottom to make sure that nothing has happened to the catheter. Maybe a kink in the line? Maybe it broke off somewhere? Shunt failure or malfunction is one of the most common problems with hydrocephalus. We were praying it wasn't that. The only fix is to place a new shunt. Which means another brain surgery. The shunt series showed a perfectly intact shunt, another promising result. 

The next test was to find out the pressure in Nicholas's brain. This would show if the shunt was working for sure. This required a needle to be placed into the area where the shunt is to measure the pressure. Normal. It appeared that the shunt was still doing its job and Nicholas wouldn't be in surgery. 

Because they were preparing for possible surgery, they had stopped all feeds the night before. After not feeding for 12 hours, Nicholas took his first feed like a champ with no fussiness or apparent discomfort. 

We still don't know why his head circumference increased or why he was so fussy but he was discharged home again.

One Month!

With Zach, I seem to remember everything about his first month. Of course, we just had the one.

With the twins, the first month flew by and I remembered that I had to take a picture to memorialize it. 

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.