Surgery Sucks

Sorry for the pessimistic title, but it  really does. Surgery is the worst! While we successfully made it through Will’s surgery last week, it hasn’t changed my outlook on surgery as a whole.

Ella’s surgery is Thursday morning. Due to her cleft lip & palate, she’ll have lip & nose revision, palate fistula repair, dental work and ear tubes. Her surgeon estimates she’ll be under anesthesia for around 5 hours and recovery could take up to 2 weeks! We’ll get the call tomorrow night to inform us of what time we need to report to the hospital and when she needs to stop eating/drinking. It’s been such a long time since she’s undergone a major surgery, that I’m out of practice.

The bigger issue is that she’s now big enough to be aware of what’s going on, which means she asks a ton of questions. We are extremely open and honest with her so when she asks things like, “will they cut my face?” the answers become very challenging. I’m happy she’s talking about it and I think Will’s surgery has helped her to be better prepared, but it breaks my heart to know she’s so little and has to face surgeries like this for a large portion of her life.

When we went through her lip repair at 4 months we worried, but at that time she hadn’t had the opportunity to fully showcase her enormous personality and we were lucky that she bounced back quickly. By the time she was 10 months and undergoing her palate repair, we really worried that the surgery might change her personality. We worried that it might change who she was, it might dim her light. For a week after the surgery, she didn’t smile, she didn’t giggle and she was a defeated little girl.

I do not want to go through that ever again. That was the worst feeling in the world. Luckily her bright, shining star returned, but the thought of losing a piece of the child we love so much is terrifying. The risk of surgery is a very dangerous thing, but as a mother, watching your little one in pain during recovery is the most helpless feeling. If only we could trade places!
FacebookTwitterGoogle+Pinterest

Time Stand Still

Yesterday my baby turned 1. While it’s an amazing thing to watch your children grow – it was a tough day for me. I wish I could find a way to make time stand still. I love this age.

Will learns something new every day. He smiles, laughs and squeals all the time – just to get a bit of attention. He’s on the move, crawling everywhere – even up the steps (all the time)!
He still eats like a beast, but now it includes solids too! He loves pretty much everything, especially blueberries. He thinks it’s hilarious to throw his food on the floor whenever he feels like it. The dogs don’t seem to mind, but I’m not a huge fan of the ants he’s attracting as well.

I’m currently his favorite person on Earth. I wish that would last forever. He loves to play with me, tackle me, snuggle with me – really just anything that involves me. I’m sure I’ll want to pay great amounts of money for that attention in 12 years.

While his birthday was a bit sad, we had a great time at the zoo. The weather was beautiful and the animals were at their finest. We were able to see the chimps playing up close and personal, the sea lions preparing to be fed and the tiger bathing himself. While checking out the giraffes the zookeeper randomly chose us to go back to feed them. It was the coolest experience and both kiddo’s loved it. I knew they had long black tongues, but I did not know they were that soft. I was expecting something much more coarse!

After we finished the zoo, we returned home for some cake. I thought Will loved blueberries, but it stands no chance in comparison to cake. He ate every last bite and was so full of sugar that he was up til 10 p.m.
FacebookTwitterGoogle+Pinterest

Will Update

Will’s surgery was a success!

We were dreading the morning of because he wasn’t able to eat after midnight, but I woke him to feed at 11:30 p.m. and he went right back to sleep. He slept all the way through the night and the morning went surprisingly smooth. We took Ella with us to the hospital and even she cooperated! We arrived at the Children’s Hospital (Tuesday, July 23) at 6:15 a.m. We were able to play with all the new toys and before we knew it, it was 7:45 a.m. and they were coming to take him in.

I chose to not go back to put him under. I felt it would be too hard on both of us; him wanting me to hold him and me not being able to see him cry. As the anesthesiologist walked down the hall, his big blue eyes looked back to see Ella & I peeking around the corner. It was heartbreaking. I hate those double doors! As they opened up, I was fighting back tears so that Ella didn’t see me cry.

We used this experience as an opportunity to prep her for her next surgery too. While I’m not happy that Will had to go through surgery, it does help for her to see that she’s not the only one to endure it.

We were told the surgery would take 2 + hours and that there were a few different scenarios that could play out. As I mentioned in my previous post – we were prepped for 3 different outcomes. Around 9:25 a.m. the anesthesiologist came to let us know that the surgery was over, ensured us that he did great and the surgeon would be in to debrief us.

The surgeon then came out and informed us that much to his surprise, the testicle was there. It was very high and half the size of the other, but it was still there. They were able to remove it and place it in it’s rightful place. He indicated that it could move up & out again and if that happened we’d remove it entirely. He also stated that there was a hernia associated with the issue as well, and they removed it. We now wait to see if it grows and functions as he grows older and goes through puberty.

We were told that someone from recovery would come and get us once he woke up. We waited for about a half hour and no one came for us. Finally a nurse came to say he was still sleeping, but she could take us back. When we got back there his nurse indicated she was worried about his airway because he was pretty full of mucus. We tried over and over again to get him to wake up and cough it out and he just wouldn’t do it.
As time went on you could see the concern grow in the nurses faces. We had been in recovery for over an hour and could not get him to wake up, no matter how much we tickled his feet, pinched his cheeks or rubbed his head. The anesthesiologist was coming back and forth and decided it was time to give him some anesthesia reversal meds to try to get him out of it. After three separate doses, nothing was working. I was getting very worried because it was almost two hours and we could not get him to respond to us and he couldn’t go without the oxygen mask without his levels dropping.

We had two options left – 1)stick a tube down his nose into his throat to get him to cough up the congestion or 2) get a cold wet washcloth and rub it all over him. Obviously, we opted for the latter and after two long hours we were finally able to get him to open his eyes. After he was able to breath without oxygen for 15 minutes, we were released to our room.

Will remained pretty sleepy and not very hungry for the majority of the time, but was able to eat right before it was time for us to pack up and go home. They estimated his recovery time to take one full week and that he could move around based on his comfort level.

We assumed he would be immobile for a few days and when we got home he was a bit whiney and definitely slow moving, but shortly there after returned to his old, crazy self. He began to eat like normal (a lot), nap like normal (2+hours) and move like normal (all over the place).
Even though his bandages are bloody & he’s bruised and swollen, he acts like it doesn’t bother him. He even slept through the night!

I continue to be amazed by the strength of my children. They are by far the toughest, most amazing little humans I know. They’re also sweet. Don’t believe me, check out the picture Ella made for Will the day of his surgery!
FacebookTwitterGoogle+Pinterest

Overflowing

It’s been over a month since I last wrote (not counting work related posts like this one). Typically I fall into dry spells because there’s nothing to write about, but in this case – life has been so hectic that I just haven’t had the time. Now I feel like my brain is overflowing with things that are worth documenting that one post won’t be enough! Between selling our house, buying a new one, going on a honeymoon, scheduling surgeries for both kids, family photos, participating in the March of Dimes Walk – the list of things goes on and on and on.

As I sat down though the most important & ironic thing is the fact that my last post was about the loss of a dear family friend and the importance of spending times with the ones you love. Since then I sadly lost another family member due to failing health and my grandfather was rushed to the emergency room with internal bleeding. He has since been released from the ICU but the scare it created is something my family was not prepared for. Hopefully as we go through many other tests, everything will come back in the clear and we can stop worrying.

Since we’re discussing medical ailments, I’ll use this post to update on what’s going on with the kiddo’s and upcoming surgeries. We’ll start with Will since he’s easier. Will was born with a condition called cryptorchidism, more commonly known as undescended testicle, which affects 6% of all newborn boys and it either means that the testicle just didn’t drop or it doesn’t exist at all. Most of the time, if it’s there, the testicle drops on it’s own within the first year of life. In our case, that hadn’t happened – which made me worry that he may not have two at all.

We finally had the much anticipated ultrasound and were able to locate it within his abdomen. I feel very relieved for his sake, however that now means we have to have surgery to bring it down.  Nothing is on the books yet, but we meet the surgeon tomorrow to get things in order.

So now for a regular update on Will:
He’s already 9 months old! It makes me sad that he’s growing so quickly, I wish I could freeze him exactly as he is right now. We had our 9 month check up last week and he weighs 21 lbs. 9 ozs. and is 29″ long. He is the most mobile kid I have ever seen, considering he hasn’t figured out crawling or scooting yet. He rolls all over to get to where he needs to be. That doesn’t mean he isn’t trying to crawl though and I think any day now he’ll be on the move. He’s still not in love with solid foods, but he loves the Gerber Puffs.

Onto Ella. As most of you know Ella was born with a unilateral cleft lip & palate. That means we have undergone many surgeries already, with an unforeseen amount remaining. Overall we have been happy with Ella’s surgical path, however as she’s grown – things have stretched and shifted, making us feel like she could benefit from another surgery. Our surgeon is conservative and prefers to wait until they are absolutely necessary so we have held off.

In the beginning of April I took her to a routine dental cleaning and learned that she had cavities within a few of her bottom teeth and the teeth in her cleft line could benefit from some work as well. The front teeth are extremely important to keep in a healthy state. If we were to pull them out (after all they are baby teeth) it would allow her bone to shrink even more than it already is, thus making a bone graft down the road more complicated. So, within a matter of seconds the appointment went from conversations of what prize she would get, to when we could schedule surgery.

I quickly got on the phone with our surgeon and was lucky enough to get into Cleft Clinic that same week. After our meeting the plan was set in motion; in addition to the dental work, we’ll have a lip & nose revision, fistula repair and the tubes replaced in her ears. As you can imagine, speech development is also affected by cleft lip & palate, so we’ve been in speech therapy since Ella was 2 years old. Recently it seems like her progression is at a stand still and I have yet to see an improvement in the air escape or hyper-nasality. Therefore, in addition to the other procedures, we are exploring the possibility of a pharyngeal flap (P Flap) surgery to create a seal between the nasal & oral cavity. I have about 1,000,000 questions and have yet to decide the best way to move forward but the only real way of knowing is to undergo a nasal endoscopy again. We have done that once before and it was terrible. It consists of a rubber hose with a camera on the end being inserted into her nostril and down into her throat. She then has to be cooperative enough to follow their prompts to say certain sounds, all while we watch to see if the closure is happening. At this point we’re leaning on having the scope again so that we’ll know for sure and then get something on the calendar.

I had wanted to get both kids surgeries handled before the end of June, so that they could recover in a home that is familiar and comfortable to them (more on the house selling/buying in a future post), but as this continues to drag out – it doesn’t seem realistic to accomplish it all. Wish me luck!

So now for a regular update on Ella:
She continues to be the most rambunctious, crazy kid I know. She ceases to amaze me with the witty things she says. Tonight at bedtime I was asking her to act like “my big girl” (we’re having potty issues again randomly). She replied with, “Well dad wants me to stay just like I am, but I can’t help getting bigger. I didn’t make that choice! God did! Silly God.” We had a great turnout at our 2nd March of Dimes Walk on behalf of Cleft Awareness (more on the walk in a future post) this past weekend. She loved spending time with her cousins and couldn’t believe that we all had shirts with her face on them!
FacebookTwitterGoogle+Pinterest

This Too Shall Pass

It seems that as of late, I am continuously whispering this ancient proverb numerous times just to make it through the day. My common stressors range from everyday work struggles to trying to juggle too many things at one time to fighting with Ella every day to complete the most basic tasks.

Each day as issues arise I try to remain calm and tell myself, “This too shall pass.” As a matter of fact the image to the right monopolizes the 27″ of space on one of my work monitors.

Hopefully tomorrow is no different. Ella is scheduled for surgery to replace her tubes in her ears at 7 a.m. tomorrow morning. In the grand scheme of things, the surgery is minor. It’s definitely not like the 3 hour surgery at 4 months old where we anxiously awaited as our surgeon reconstructed our precious little girls face, or like the 4 hour palate repair at 10 months old-which resulted in a very long and painful recovery.

As a matter of fact, we have been through this surgery before and it was a breeze. It seemed we had barely sat down in the waiting room to drink our coffee and the ENT had called us back in to see our little lady.

So why am I so nervous? Probably because “we” really haven’t been through this before. Ella has. Yes we wait and stress and pray, but we aren’t really experiencing anything. She is.

I would give anything in the world to trade places with her. I just want to go through it first so I can honestly tell her what to expect. I hate blindly saying, “Honey – everything is going to be okay. It’s not going to hurt.” What the hell do I know? I have never even had stitches in my 29 years of life (childbirth doesn’t count), let alone gone through 4 surgeries by the age of 3. I have never been under anesthesia and with the exception of childbirth, I have never been in the hospital. Nothing.

The one thing to ease my mind? Ella is the strongest person I know. Tomorrow she will go through surgery and she will bounce back quicker than we could have ever imagined. We will bring her home and she will go back to playing with her dolls, singing her songs and entertaining us as usual. Wishful thinking? Maybe. Even so, this too shall pass.

Photo: November 2010 – Ella playing right before we went into  tube surgery the last time.
FacebookTwitterGoogle+Pinterest