Two Years

Two years ago today, our crazy twins surprised us by jumping the gun on their delivery. They were originally scheduled as a c-section on December 31st. I was to be at the hospital at 5 a.m. and they were scheduled for a calm, 7:30 a.m. delivery. We had everything planned. My sister was going to fly in on December 24th and help us through the Christmas season and then she would stay home with Zachary until the twins were here. Once we were sure that everything was okay with the twins, she was going to bring Zachary to the hospital, let him come in and meet his siblings and then come in and meet them once Zachary was comfortable. The best laid plans....

Instead, I spent the majority of the day on December 20th feeling terrible. I laid on the couch the vast majority of the day. We had been scheduled to go to a friend's Christmas party and I ended up letting her know we wouldn't make it since I felt so terrible. I went to bed but was woken up at around 1 a.m. with contractions. I'd been having Braxton Hicks for several weeks at that point, so I got up and tried walking around and drinking some water to see if I could make them stop. Instead of slowing down or stopping, they got more intense. By 1:45 a.m., we figured out I was contracting every three minutes for 60+ seconds. Time for the hospital! Our backup emergency contact didn't hear her phone when we called, so Zachary ended up making the trip with us.

An emergency c-section with the anesthesiologist as my support person (since Mike had to stay outside with Zachary) and the twins were born three minutes apart. Both came out screaming, which was a relief, and I was shocked when I heard that Emily weighed 6 lbs 1 oz. That was a good healthy weight, considering they were born four weeks early.

Two intense years have passed since that day. It's been amazing and stressful to watch these two grow. Emily has turned into an outgoing and friendly toddler. She laughs easily, has no issue whatsoever holding her own against two, and loves giving hugs and kisses. Six months ago we were worried at her lack of speech, but she's recently blossomed and has begun speaking many more words and even trying to put sentences together. She adores Minnie Mouse, baby dolls, anything resembling a telephone, and puzzles.

Nicholas loves cars and books and electronics. He is happy the vast majority of the time and is desperate to keep up with his brother and sister. He likes to wrestle with them and loves to laugh. Bubbles are amazing to him - he will try to pop them and says "pop pop pop." He's recently begun speaking more words. He has amazed us with the amount of fight he has. This child simply knows no boundaries. As you all know from the many many stories I've posted throughout the past two years, we have been warned multiple times from multiple physicians that they don't know what to expect from Nicholas. That he very well may have devastating brain damage and that he may never walk or talk or eat. You also know that we found out that brain damage did cause Nicholas to have some issues with his suck/swallow reflex and that it was ultimately decided a g-tube would be the best way to feed him. And that he's continually working on improving that through speech therapy. And that he passed a puree swallow study but we're still working on liquids. And that he has moved from being able to sit up on his own, to a modified scoot, to a modified crawl. And that we fought against physicians to get him a helmet and shocked them completely by having the helmet work and fix his noggin. Last week, his physical therapist tried using a gait trainer with him and Nicholas used it to stand all on his own (with support). And then, he took two steps.

Two years ago, we were scared of having two babies at one time. We were worried about Zachary going from the only to the older brother of two. We didn't know what to expect with Nicholas. And while we've had some of the most difficult times we've ever experienced (we know far more about the inner workings of an intensive care unit that we've ever wanted to), we've also experienced some of the best.

Happy birthday Emily and Nicholas!

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.

New Year, New Updates

I've been terrible about updating this blog, but I'll try to be better - especially with all the exciting things going on!

Nicholas is, and has been, very stable. (Knocking on wood right now!). We've had one hospital trip recently and it had nothing to do with his hydrocephalus and everything to do with a user (ahem mom) failure in trying to remove his g-tube button. I couldn't get the syringe inside the spot to release the liquid out of the balloon. I tried several times and since Mike wasn't home to try, I decided to just take it to the experts. The ER had the button out and fixed very quickly.

We have noticed that Nicholas has been having several breakthroughs recently. He's getting much better about sitting up on his own, if we stand him upright he will plant his feet down and straighten his legs until he's standing with assistance, he has started trying out words (ball! mama! dada!), and we've started to feed him baby food along with his formula through the g-tube so he can get nutrients from real food.

I was in Las Vegas for work about a week ago and Mike called me. He had just left the office after Nicholas's appointment with his helmet specialist. When he initially was evaluated, the asymmetry of his head was at 26 mm. At the meeting last week, Nicholas had gotten his measurements done. His asymmetry measured 9 mm. 9. Less than 1 cm of asymmetry. And, his head had gotten smaller than it ever has been before. The helmet specialist told Mike that if this trend kept up, he thinks Nicholas will be discharged from his helmet in April. This is the child the PA in the neurosurgeon's office wanted to not even give a prescription for helmet therapy for! He thought it would be pointless.

Other things -
I went late in January to my Hydrocephalus Awareness WALK chair training. I came back ready and willing to hit the ground running. I'm so excited! I have two fantastic co-chairs who are just as excited as me, we've already started garnering sponsors, and I'll be announcing our location and date within the next couple of days! If you haven't liked our page, please do so ASAP! You can also check out our WALK website or Nicholas's personal fundraising page. We'll be fundraising for the Hydrocephalus Association in his name for the WALK. People can join his team and fundraise for that team as well, create a new team to fundraise in someone else's name (or just a fun team of your making!), or WALK virtually if they can't attend the local WALK. Lots more information to come about helping out in that direction!

As for the other people in our family, Emily started walking about a week and a half ago. She took a few tentative steps and was at that point when I left for Vegas. By the time I got home, she was fully walking. It happened very fast. I was very worried because Zach was an early walker (he was pretty much walking by 10 months), but again I've been taught by my kids that things happen on their own timeline and when they're ready, it's go time. Zach is still doing fantastic at taekwondo, he has a tournament in April and he's going to compete in sparring for the first time ever. His instructor swears he's ready, and I believe him. Zach absolutely loves his sparring class. I have to admit I was really nervous for him to start sparring, it seems so violent for such a little guy. But, it's points sparring, so the idea for the match is to get points, not knock out your competitor. Of course, it's possible that he'll get kicked or punched the wrong way and get hurt, but frankly he could get hurt playing soccer or baseball as well, so we just learn the safe and right way to do things (learning defense is a HUGE part of class) and try to minimize the risk.

Again, I'll try to be better about updating the blog. I know that I've done such a terrible job lately.

525,600 Minutes

In one week the twins will turn one. When I think back over this whirlwind year, I can't help but feel like we are so incredibly lucky. 

The first month of the twins lives was hectic and scary. Nicholas underwent two major surgeries and spent 21 days in the NICU. I've learned that's a heartbeat in the NICU. He was a short timer. But for our family that was an eternity. Zach befriended child life, figured out where the playroom in the children's hospital was, learned where to touch on the magic wall in the lobby to make music. He quickly learned how to pull out the blanket child life left for him and play with the toys in "his" bin. And what day there was good stuff in the parent lounge fridge. 

Emily slept in the arms of nurses, doctors, therapists, aunts, grandma and parents as we sat for hours next to Nicholas's bedside. 

Mike and I found the healthier cafe in the hospital, learned how to scrub in properly, quickly learned medical terminology, learned how to navigate a "normal" life as we carried around a feeding pump, feeding bags, extensions. We learned how to replace a button in our son's stomach so he could always eat. We watched therapists work to increase Nicholas's strength and learned what they were doing so we could do it at home. 

We enrolled Zach in taekwando so he would have something for himself and we have watched him blossom into a remarkable child. He is a fiercely protective older brother, a patient playmate, and has most recently become a victim of his sister's experiments with biting. He is independent and excelling in school even though he's one of the youngest in his class. 

Emily is growing into a stubborn and independent toddler. She is crawling everywhere and getting into everything. If there is something she shouldn't be putting in her mouth anywhere around her she is guaranteed to find it and put it in her mouth before anybody realizes. She is friendly and likes people. She spends a lot of her time with her brother at therapy and benefits from playing with the toys there. 

Nicholas has had the hardest year of any of us (and it isn't over yet as he has a minor surgery scheduled December 31st to remove a cyst from his nose) and still remains the happiest, sweetest child. He willingly smiles at everyone, he laughs at pretty much anything his big brother does, loves to pet our dog, and is getting around by rolling all over the place. He is currently anywhere between 3-5 months delayed but is making incredible strides every day. His therapists are amazed at his successes. 

It was probably one of the hardest years of our lives for Mike and I. Between working opposite shifts, planning around hospital stays, fighting insurance, and buying a home, we've spent a significant portion of the year at stress level maximum. But we are so very lucky. We get these amazing examples of tiny people to love and raise. It's not an easy job, and with the independent streak running through all three of them, it will probably get harder but it's a pretty fantastic life. 

And I can't believe we will have TODDLERS in a week. 

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. 

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. 

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?

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! 

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. 

Merry Christmas!

Emily slept through the majority of her first Christmas. Zachary enjoyed it, and was quickly falling head over heels in love with his little sister.

Because I had to feed Emily once every few hours and because she hadn't had any vaccinations yet, she wasn't allowed in the NICU so I couldn't really go either. Mike left soon after we opened presents to spend the day with Nicholas so he wasn't alone on his first Christmas. 

My sister made our Christmas dinner, and let me spend time with Zachary and Emily. Since I was still recovering from the c-section, I wasn't terribly useful anyway. 

It was a very quiet Christmas and our family felt somewhat disconnected because we were split. 

Discharged

On December 24th, Emily and I were given clean bills of health and were determined ready to be discharged. We packed up everything in our room and dressed her in her going home outfit. The nurses told us to leave everything in our room while we went up to the NICU to say goodbye to Nicholas.

I had known since before giving birth that we would be leaving him in the NICU when I went home. I had prepared myself that we may potentially have to leave Emily there too, so it was very positive news that she was coming home with me. It still didn't prepare me for what I felt, leaving him there. 

The nurse practitioner heading the NICU that day was prepared with tissues and hugs. She told me that, having worked for years in the NICU, she felt that she understood how difficult it must be to drive away from the hospital without your child in the car. Then she had a son who had to stay in the NICU. She said she sobbed the whole way home and nobody could calm her down. 

I cried as we drove away. I knew he was in amazing hands and that the nurses on that floor watched over these babies as if they were their own, but I was leaving and my baby wasn't coming with me. I thought I was prepared for that. You can never be prepared to leave your child behind in the hospital. 

Emily kept me very busy and luckily my sister was here also, so that distracted me enough that I made it through the first day and night at home.

Meeting our daughter

After leaving the NICU, I was wheeled to my room in the mother/baby unit. I met my first nurse and was allowed to order some clear liquid food off the menu. I inquired about how much longer they were planning on keeping Emily in the nursery and was told that they would find out. Mike and Zachary settled in on the couch and Zachary was allowed to watch some cartoons on TV.

I kept a close eye on the clock and at exactly six hours after I was wheeled into recovery, I asked Mike to find out what was going on with Emily. He left and a few minutes later walked back into the room pushing a bassinet and our daughter joined us. A lactation consultant who also worked with babies in the NICU followed her in and we started working on breastfeeding. Since I was also going to be pumping for Nicholas, she brought me a pump kit and a pump. She promised me that I wouldn't get much in the beginning but to send whatever I was able to pump to the NICU for Nicholas because every little bit helped.

Zachary was very curious about his sister and also very excited to finally meet her. We let him hold her and touch her and begin to form a relationship with her. I was amazed that he was so good with her. He had no jealousy or anything, he immediately declared that his baby sister was "soooooo cuuuuuuute" and wanted to take her home right away.

Mike visited the NICU a few times during the day and promised me that Nicholas was doing well. He needed no respiratory assistance - was completely breathing on his own. That was huge - because of the level of severity of his hydrocephalus, they were uncertain just how many brain functions he would be able to use. The fact that he had basic abilities indicated some brain function which was something we wanted to see.

Later that night before Mike took Zachary home to sleep, we dropped Emily off at the nursery and Mike wheeled Zachary and I to the NICU so I could spend some time with Nicholas.