Boggling Bravery

Ella went into surgery around 7:45 a.m. this morning and as I sit here patiently (ha!) waiting for the next few hours, I cannot get over how brave that little girl is. It’s honestly mind boggling.

For those of you who have ever experienced surgery, especially for little kids, it’s typical for one parent to accompany them into the OR as they are put under. We have always chose to not go in because we felt it would be easier for both the kiddo’s and quite honestly, easier on us. Regardless of that decision, it’s normal for you to walk with the team down to the OR and then pass off your precious bundles to the medical staff.

Even though we’ve let Ella go in alone in the past, I thought today might be different since she’s older now and more aware of the situation. When the children’s coordinator (which is genius might I add) came in, I asked if she would like either Joe or myself to go with her into surgery. She quickly replied that she wanted to go alone. I wasn’t surprised but I thought she might change her mind. As it became time to make the trek to the OR we all prepared to walk together and she promptly said she wanted to go alone. I explained that she could go into surgery by herself but we’d like to walk with her. She caved and let us all go with.

As we walked down she was pretty quiet so I thought she might be starting to second guess her decisions. When we got to the dreaded double doors she met her nurses and it was time for us to part ways. As I went to give her a hug I could have sworn she was going to freak out at the last minute and instead she pushed me away mid-hug and was ready to go!

While I’m so proud of her and impressed by her courage, I just can’t believe there wasn’t a second in her mind that she might have wanted some support from her parents. Joe says it’s because she doesn’t fully know what’s going on, but I completely disagree. We have talked about this surgery for the last 6 months. She knows in depth everything that’s going to happen, right down to the scalpel. Even IF she didn’t realize the extent of what was happening, she doesn’t know a single person in that terrifying room. As someone who’s never personally experienced surgery, the OR is intimidating space for me and I’m an adult.

I started this blog to document our lives and I hope when Ella is big enough to read this she will look back a this post and know that she is my hero. She is by far the bravest, most courageous little person I have ever met. She is going to do great things and conquer the world!

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!


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!

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.

Ella’s Story – Part 3

Our second surgery happened on August 27th when Ella was 9 months old. This was to repair her palate and insert ear tubes. Since the lip had been repaired the gap in the palate was much smaller, but our surgeon was still unsure if it was going to be too far of a stretch. Even though it was our second surgery, we still went through the same uncertainty of what to expect. We went into surgery at 7:30 a.m. and since the cleft was so much wider and longer than they had expected, it took a lot longer than the first procedure. Dr. Shehadi was able to completely close the palate, which was great news. Once again we spent 1 night in the hospital however, we should have stayed longer.

The recovery process didn’t go quite as well as the first surgery. Ella was not eating and very sad and cranky after the surgery. We struggled to get her to eat anything. We were told that in order to leave she had to drink a certain amount of liquid. Since she was so unhappy she didn’t meet the requirements. Joe thought that since she came close enough, we could take her home and figure it out from there. So, we packed up and came home. The moment we walked in the door she was a completely different child. She was happy and excited to be home and instantly got into her bouncy horse and went crazy.

Maybe it was the fact that the house was filled with family that she loves, but as soon as they all left the atmosphere changed again. She returned to her unhappy phase and refused to cooperate. We were once again struggling with no eating, no drinking and no sleeping. I was starting to panic that she was going to become dehydrated; wet diapers were few and far between. Since Ella refused to sleep through the night, my mom thought that I needed a break and came to help out.

Almost an entire week and a half after surgery was pretty painful for all involved. It was frustrating but I most of all I felt so awful for Ella and the pain she must have been going through because normally she is the toughest kid I know. We were beginning to worry that the experience may change her personality forever. Then, finally the day before I had to go back to work she turned over a new leaf and returned to her normal, happy and smiling self. We were so grateful to have her back and even more appreciative for just how special she is.

At the follow up appointment with our surgeon I understood why Ella might have been in so much pain during recovery. Even though Dr. Shehadi initially closed the palate, the gap was just too far and stretched to thin. Sadly, part of the palate tore open after the repair and a hole remains there today. I can’t imagine how painful that must have been for Ella at the time. I now completely understand her sour mood. Poor girl!

We thought we would need the palate repaired immediately in order to encourage normal speech development and prevent other issues however, we have been back to our surgeon a few times and at this time he thinks it’s OK to wait. We trust him so we will wait until then. We go back to Cleft Clinic in October where we will meet with the team and learn what our next plans of action are. As usual, the waiting game continues.