Friday, February 28, 2014

"Behind My Smile"

In most every conversation, with a stranger or a friend,
I am asked the same old question, time and time again:
"How are you doing?"; as commonplace as simply saying "hi"
But the answer doesn't always speak the truth, rather a lie.
Instead of sharing how I feel, and talking for a while,
I hide my feelings, worries, fears, deep down behind my smile.

"I'm fine," I say, not really thinking what is going on.
The reply, so automatic, just rolls right off the tongue.
And just as quickly, my next thought, is always, "How are you?"
And the other person quickly states that, "I am just fine, too."
Who are we kidding? We both know that today we've walked a mile.
Why can't I just share honestly what is behind my smile?

Well, here it is, here's what I'd say, if we both had the time:
My day began with hopes, with goals, with reason and with rhyme.
But then my daughter, on the spectrum, threw a major fit
About her clothes to wear to school; she said they "didn't fit."
And after solving that one, I prepared myself once more
To brush her tangly, redheaded mane, like many times before.

But then my son, intent on interrupting, came to say
He didn't want to make his lunch for school, nope, not today.
And so I told him firmly, YOU WILL MAKE YOUR LUNCH, that's right
Or you will be too hungry in your class, DON'T PICK A FIGHT!
Instead of kind obedience, I hear him angrily
Throw his shoes, his backpack, and then an evil glance at me.

Well, that would be enough to wipe a smile off my face,
But that does not include my little baby's cries and rage.
You see, every morning, this poor babe is placed inside
His playpen, screaming desperately, for someone to confide.
His cries are like the background noise that linger through the air
As I get my children off to school and FINALLY out of my hair.

Some might say this sounds just like an ordinary start
To any young mom's day; so why pick it all apart?
But trust me, I'm not finished yet, I've only just begun
To tell you why I'm not just "fine," there's really more than one;
One answer, yes, but not one feeling, or frustration, fear, or worry
If you can listen a little longer, I will try to hurry.

With my daughter on the spectrum, every day is up and down.
Every feeling that surrounds her makes her feel like she will drown.
Every new experience can send her into a panicked state
Every change or cancellation can make her most irate
But every challenge conquered gives her confidence and glee
And shows me that autism spectrum is not a disability.

With my oldest son, his challenges are of a different kind
His are upon his body and do not affect his mind.
Mastocytosis took its toll on him in infancy
And caused him to have spots upon his body, most you can't see.
But though most people do not know, he knows, and he believes
That his spots make him special; this is what I have perceived.

And my baby boy, he had my heart just hours after his birth
When I discovered that his trials would be many on this earth.
A bilateral cleft palate, bringing surgery and more
Trouble gaining weight, and feeding, and doctor visits galore.
Then came news of the duplication of Chromosome 22
But this just proved I've only seen a small part of what he can do.

And so you see, three children that I'm proud to call my own
Have challenges to face, which often make me feel alone.
Alone because no one can understand just what I face;
Alone because I often feel that I don't have a place.
So next time, when you ask me how I'm doing, you will know
That this is what's behind my smile that always seems to show.

I smile because I'm happy, yes, I'm trying hard to be.
I smile because I'm strong despite all the adversity.
I smile because though things are hard, I'm really not alone.
I smile because I know that in the end, my heavenly home
Will know my story, know my worries, and take them all from me
If I can just endure, and help my children be the best that they can be.

Tuesday, February 25, 2014

Guest Post: Happy 4th Birthday, Ryan Eugene!

So grateful to Cristy for sharing the story of her son with us. She is a good friend and support to me, and also a mother to redheads! I know you will enjoy learning more about Childhood Apraxia of Speech. If you or anyone you know is interested in sharing a story about your special needs child, email me at Enjoy!


I would like to introduce you to my 4 year old son, Ryan.  He was born on February 25, 2010, being very healthy.  Ryan sat up before 6 months and started walking at 10 months...and by that point I knew that we should have invested in a cow as he would eat us out of house and home!  At around a year he started to say simple one-syllable words like "dog," there were maybe 4 or 5.  By the time he was 18 months old he stopped talking altogether...not one word or sound.


We worried, but we have known other kids that took a little longer to talk, so I did research.  My husband and I prayed and pleaded, and then we made a decision.  We decided that we would give him until he was 2 years old to say even one word.    His second birthday came and he still wasn’t saying anything, so at his physical we requested a referral to a specialist.  His evaluation was done on the 1st of May by a brilliant speech pathologist named Debra.

After the evaluation she told us that our little boy had a profound speech delay, meaning more than 12 months behind.  She told us that she would not make a diagnosis until he had been in therapy for several months.  She recommended two 30-minute speech sessions per week.  However the only office that offered the needed therapy and would take our insurance was a one-hour drive from our home.  Our insurance also required us to pay $45 per session...that added to the $15 for gas to and from the office.  $60 per session…our hearts fell because we knew that financially speaking we just couldn’t put out $120 a week.  We decided that once a week was better than nothing, and for the next 18 months every Thursday afternoon we took him to see Debra.

We watched as she dragged sounds and approximations out of him..."n" came first and thus "no" entered into our lives finally and we were overjoyed to hear it.  We got to "arr-kee"(Barkley, our dog), "mom," and "I-eem"(ice cream).  The first time he ever saw or played with an ipad was in the course of therapy, and I watched as he thrived with it…he loved it.  We soon discovered his love for Batman "at-man"...and this ushered in our knowledge that our little made could make the most amazing sound effects ever while playing with his Batmans.  He started making car sounds, fighting sounds, and crashing sounds.  He has since become an expert at shooting sounds.

Between 6 and 8 months into therapy his therapist asked me if I knew anything about apraxia and having devoured everything on the internet about speech delay, I told her that I understood what it was.  This is when the diagnosis came:  Childhood Apraxia of Speech.  After doing much research I came to understand that this would take years to get him caught up.  But we were given the hope that with all luck on our side he would enter kindergarten without any problems.

Almost a year after the first evaluation we did another with the school district to get him started with them, so that he could get all the time he needed and not be held back because we couldn't afford it.  I discovered that things move faster when you already have a medical diagnosis in place.  We did have to go through the stupidity of a school nurse trying to give him a vision and hearing screening, which of course he wouldn’t cooperate with but it was amusing.  After my very first IEP, which was mind-numbing at best, I walked away knowing that neither of those women knew anything about Childhood Apraxia of Speech.

They made some completely unrealistic goals for him to accomplish; for example they wanted him to be able to say "elephant" when he couldn't even say "dad”.  I was skeptical about their ability to treat him, but I remained hopeful.  When school rolled around again he would start with whoever it was...and it turned out she was a God-send, because she was there just long enough to change the ridiculous goals on his IEP to something far more reasonable.  She also did the recommendation for CASANA for a new iPad, which he was granted and received before the beginning of December last year.

After watching my son struggle with language all these years, I realized how much the ability to speak is taken for granted.  Heaven knows I did before I had him; getting his sister to shut up was always the difficulty with her.  What I have with Ryan is a big jumble of frustration and anger, and he has no ability to tell me what is going on in his head.  I have learned to rely on the spirit to aid me in my attempts to understand what he needs and wants.  As his mom I know what he needs instinctually, and I have had to learn to curb my desires to just take care of it.  I have learned that he needs to ask first, and that I have to prompt him to ask.  When I don't understand he takes my finger and shows me, then we say what it is.  When the frustration becomes intense and we don't understand each other at all, then we hug a lot.  He lies in my arms and cries while I cry too, then we get up and play Batman together.  And every night before bed he says "oove you mom", and my world is right again.


I like to believe that I have become a more attentive mom, and even a more patient mom...but I'm not sure.  I have learned to listen more carefully for the little things.  I have learned that therapy takes time, lots of it.  I have learned the ever-increasing depth of a mother’s love.  I have learned to use toys and technology to help my son learn words.  But I think the biggest lesson I have learned is to celebrate the small victories and achievements.  We all have lofty goals for our children and sometimes we forget that they are children and so we forget that if we don’t make a big deal out of the small things then there will never be big things to celebrate.  As moms we have to take things one step at a time, and be grateful for the small steps.  It took almost 4 years to hear my son tell me that he loves me…that is our biggest step yet, and every time I hear him it melts my heart.  My son is amazing, and he has taught me love, and he has taught me patience.  I believe I am a better mom because of Childhood Apraxia of Speech, and I am grateful that I have been given the opportunity to learn it.

Friday, February 21, 2014

When a sibling notices differences

This is something that has been on my mind a lot lately. J-babe, who is 10, is on the autism spectrum, and displays behaviors (mostly at home only) that are not normal, but allow her to release her pent-up frustration and sensory overload, especially from a long day at school. Big B, who is 7, is not only noticing the differences, but now asking why she does certain things. And even asking about other kids or adults he sees that are different. He's connecting the dots now. I knew he would soon enough, but I never felt like it was important to outright explain anything to him. I never thought I had to sit him down and say, "Let me tell you about your sister." I wanted him to figure it out on his own, mostly because I didn't want him to view his older sister any differently than any other kid.

But now that he is asking more questions, I find myself not always prepared to answer them. For example, he noticed that a child with Down Syndrome looked different and couldn't talk normally. So he asked why this child could not talk like the other kids. I told him, in the simplest terms possible, about DNA, and chromosomes, and how kids with Down Syndrome have an extra chromosome, and how this affects their ability to talk and learn, and that they were born this way. He must have understood this, and then said something too smart for a 7-year-old: "Oh, so is that what J-babe has, too?"

Well, I had to think about how to respond to that one. "No, she doesn't have Down Syndrome. She has...other things that make her do what she does." But really, how do you explain autistic traits or sensory processing to a 7-year-old? He wants to understand his older sister, his sister that he loves to play with, most of the time, until she starts tantruming, or perseverating on a question with him, or pestering and poking him for no reason at all. "She's just different than you, that's all. Her body doesn't work the same as yours. So she has to do things to make her body feel better." It was a good enough answer for now.

But what breaks my heart is hearing HIM ask her the questions, which is a new thing. Just yesterday, after a recent playdate with friends, he asked her, "J-babe, how come you don't talk to your friends when they're here?" J-babe was quick to retort, "I talk to my friends!" But Big B persisted, "No, you don't talk very much." J-babe didn't know how to answer this one. I was overhearing, and actually wondering the answer to that one, too. If Big B had asked me, I wouldn't know what to say. I don't know why, when there are more than 3 kids at our house, she becomes almost silent, and likes to follow the kids around. But you let her play, one on one, with a friend, in a closed room, and I can hear her talking away.

Or another one that Big B has asked many times over the years: "Why does J-babe have so many people to help her? Like at school, why does she have her aide, and I don't?" Again, the same answer, she's just different than you. And she needs a little more help than you do. This usually leads to him boasting, "Well, I don't need extra help! I can do things by myself!"

The best thing about these two is that they are BOTH different, in their own ways. Big B has mastocytocis, a blood disorder that caused him to have spots on his body, mostly his torso, which will fade until adolescence. These make him very different as well, but only on the outside. J-babe's differences make her behave and experience things differently. She's even asked him why he has those spots, and his answer always is, "Because they make me special!" Maybe Big B has to learn why J-babe's differences make her special, too, and I'm sure he will.

As the years go on, and my little boy learns more about the world around him, and about people surrounding him, he will continue ask more questions, more in-depth ones, that will allow me to share more with him about what makes his big sister different. I just hope that I can continue to answer in a way that will not take away from the view he holds of his big sister. I want him to see her as an equal, as someone who can do anything he can, and if not, can at least learn how to. And as long as J-babe has a brother like Big B, I'm sure she can do anything. He helps her reach new heights and will take her places that I probably never could, because no matter what kind of children you have, the bond between siblings is still the strongest bond.

Wednesday, February 19, 2014

Little N's First Year, Part 9: Dr. Martin's Prognosis and more

Driving to the plastic surgery office that morning was more nervewracking than ever. I'd done the drive at least 6 times before, but this time I had an extreme sense of urgency, and also of fear. After discovering the hole, or fistula, in his palate just two days before, I kept trying to get a look in his mouth occasionally, just to see if I was dreaming the first time. I wasn't. The hole was still there. And every time I saw it, the most horrible feelings came over me.

Luckily there was no wait and we got Little N right away to see Dr. Martin. He had a few other surgeons with him, something he had never done before. I guess they wanted to see this fistula for themselves. Dr. Martin took a look, saw the hole, and said, "Well, that's definitely a hole. I am surprised, because of all the surgeries I've done, I've never seen this happen. I see holes from patients of other surgeons and often correct them, but I've never seen one from my own surgery."

I about died. Did he really just say that our Little N shattered his perfect surgery record? So not only were we in that 1% of patients that ends up having a fistula, but we were also his very FIRST patient to have one after one of his surgeries. Couldn't be worse news, I thought.

So I began to ask him if it was true that the holes got smaller over time. If he could still eat regular foods. And the dreaded question, if he would need another surgery to correct it. He said indeed, the holes do get smaller over time, and often will completely heal on their own. He said Little N should be treated like a regular baby and eat any foods he wants. And as far as another surgery, that was to be determined. He asked me to come back every 6 weeks to see if the hole was decreasing in size. But he did give me some good news...because the hole was in the hard palate, just below the bridge of the nose, the bone would help the hole heal better and prevent major speech delays. If the hole were in the soft palate, it would not heal as well and could even cause speech issues. Well, that was something to get my hopes up, at least.

But there was still one more thing nagging at me, and I just had to know...that bread that got stuck on the palate, that didn't dissolve quickly enough. I asked, very timidly, if that caused the hole. His answer right away was no, not at all. He couldn't imagine that creating a hole. So I could let go of the guilt I was feeling, too. But to this day, I still wonder if he said that just to make me feel better. I honestly don't think he even knows how the hole happened...he is such a good surgeon.

So every 6 weeks, I faithfully brought Little N to Dr. Martin. And each time I would hear him say that the fistula was getting smaller. And my worries began to subside once again. In November, he told me to bring him back in 4 months and at that point they would determine whether he would need another surgery to fix the small hole. A surgery for the fistula would be much less severe and recovery would be a breeze compared to the first one, he assured me. So on March 17th, I take him in to find out if my summer will include another surgery for Little N. The hole is still there, but about the size of a pencil tip now. It's not getting smaller anymore, and it hasn't since about December. But I am hopeful that this summer I can enjoy my Little N.

Other than that, he is doing just great. He started walking at about a year old, is starting to say many words despite the fistula, is very social and happy, and also very stubborn and determined. I couldn't be happier to be his mom, and his older siblings couldn't be happier to have him as a brother. We love him more than words can say.

Sunday, February 16, 2014

Little N's First Year, Part 8: Recovery at Home

When we got home from the hospital, things did not seem to improve as quickly as I hoped. The first day home Little N still never drank more than an ounce of milk, and despite the pain medication, still seemed in a lot of pain. His feedings started out okay, but within a few minutes turned into him screaming in pain, and me crying tears of frustration. His diapers became very dry, and I worried he was becoming dehydrated. The second day home, I called the hospital, and told them my concerns, and they said I was welcome to bring him back in any time, but also told me to keep trying, and to give him soft pureed foods for more calories as well. What I knew for certain: I did not want to go back to the hospital!

So we tried yogurt and applesauce, and even though I couldn't feed him with a spoon yet because his mouth was still healing, he was able to get some down. Things SLOWLY got better, day by day. About one week after, he would finally drink one ounce without pushing the bottle away, and his surgeon saw him for the post-op appointment and told me things looked great. Each day that passed, I began to feel a huge burden lifted. This surgery, which we had dreaded for so long, which kept him in the hospital for three days, which caused him so much pain, was behind us now. Little N's mouth was perfected by a great surgeon. We felt blessed. We could move on and close this chapter in our lives.

I was excited to give him more solids in the coming weeks. His favorite soon became small pieces of soft white bread. The stitches weren't quite healed yet, and sometimes the bread would get stuck on the roof of his mouth, but dissolve after he drank a bottle. I was too worried about scraping the bread away and damaging the stitches somehow. He was loving eating. Things were improving and becoming normal again, until one day, a Saturday, when things were turned upside down once again.

I was feeding him yogurt, his other new favorite. I noticed the yogurt somehow came out of his nose. Now this was a normal occurence before the surgery...because of the open palate, milk or spit up would often come out of his nose. But I assumed that after the surgery, it would be impossible for this to happen anymore. I quietly took him upstairs to his room to change his diaper and lay him on the changing table to look inside his mouth. I was actually a little scared to look inside, because I pretty much knew what I would see. There was a small piece of bread stuck up there, and I gently swiped it away, and after doing so, I saw a HOLE in the top of his palate. A hole. About the size of an eraser tip. I began screaming for Joel to come upstairs. I was terrified, mortified, and I felt guilty, like somehow this was my fault because the bread got stuck up there. I began pacing the room, trying to grasp the reality of the situation. We had barely gotten to 4 weeks post-op, and I'm seeing a hole in his mouth. That 1% of babies who end up with a hole, a fistula is what Dr. Martin called it, now applied to my own baby. How could we be in that 1%? The odds were so small.

I cried, for hours. My body was physically shaking, I was so scared and worried. I prayed to know what to do. Suddenly those wonderful feelings of having the surgery behind us were no longer. It was the most devastating feeling in the world. After regaining my composure, I decided to call the hospital and explain what we discovered. Dr. Martin wasn't there, but luckily a surgeon who happened to be in the room when Dr. Martin was operating, was the surgeon on call for that day. He said he would arrange an appointment to see Dr. Martin the following Monday. That was the best we could do.

So we had to get through an entire day without any concrete answers, feeling hopeless once again. I had to teach a class that Sunday in church to the women, or Relief Society, and I honestly didn't think I would have the strength to do it. But with a lot of prayer and faith, I was. The entire Sunday seemed to drag on forever. I did lots of research online, and found parents who went through the same thing. Some said the hole closed on its own, some said it required a second surgery.

I could not wait to get to Dr. Martin's office the next day. I wanted answers. I wanted to be reassured, to know that everything would be okay, that he wouldn't need another surgery. But mostly I wanted to know how this could happen, how could we be in that 1% of babies. And to find out if it was my fault...

Tuesday, February 11, 2014

Little N's First Year, Part 7: Recovery in the Hospital

We were told to go to the PICU where Little N was still coming out of the anesthesia. It was a quiet room with few patients, but only one baby, ours. He was in a small hospital crib, with an oxygen mask over his face, his arms braced with cuffs so he couldn't bend them, an IV in his arm, and he looked very groggy. He barely moved, and all you could hear was the sound of him breathing in the mask. He looked miserable. I wasn't prepared to see him this way. But what really surprised me was his looked SO swollen, much more than I expected it to. He couldn't even close his mouth, it was so puffed up inside. I knew he would be in so much pain if it weren't for the medication.

The nurses told me I could hold him. I carefully lifted him out of the crib and held my precious boy. But I couldn't do it for long. I began to feel nauseated, so much that I handed him to my husband and had to walk away. I couldn't bear to look at his mouth and how swollen it was, and what really made me feel sick to my stomach was the smell. The after-surgery smell, the blood, the trauma, it was too much for me to take in. I just hated seeing him this way, but I also knew he would get better. It would just take time.

We were moved to a recovery room. Once there, the nurses said I could try feeding him. I didn't think he was ready. How could he possibly eat with such a swollen palate? I gently put the nipple to his mouth, and he instantly tried eating. I squeezed the bottle to assist, and it seemed like he was at least trying to eat, although not much was going down. It was then that I knew this recovery was going to be harder than I ever imagined, than I ever was told by the surgeon.

The first day I continued the feedings, but he never got anything down, really. So they kept him on the IV. Dr. Martin came to visit and said he looked good, and that most likely he would go home tomorrow. I already knew this, and planned accordingly. I could handle one night in the hospital.

The first night he woke every few hours, not because he was hungry, he had the IV, but because he was in pain. The Tylenol study that I agreed to do proved to be ineffective, so the nurses gave him morphine. Sometimes he was in so much pain, crying, wriggling around, that I didn't know what to do except ask the nurses to administer more medicine. And he still wouldn't take the bottle. We even tried different types of bottles, even went back to the pacificier/syringe method I used as a newborn. But his pain was too much.

We made it through the night, and the next day, but things did not improve much. He still needed morphine, still wouldn't drink from the bottle, still on IV fluids. Dr. Martin wasn't concerned yet, and told us he does have some patients that stay more than one night. Well, I wasn't prepared for more than one night. I was told it would only be one. So when the evening approached again, and he still wasn't eating, I faced the fact that I'd be in that hospital room, trying to feed my baby who didn't want to eat. In a way it was very similar to his birth...I spent the first day or two learning how to feed him WITH the cleft palate. Now that it was fixed, I spent the first day or two learning to feed him again, WITHOUT the cleft palate. Only this time, I wasn't the one recovering from a traumatic experience: my baby was. And it broke my heart.

The second night was the hardest. Little N squirmed and cried until about 4 am, not sleeping at all. The medicine wasn't helping as much as it did during the day. He still wouldn't eat. I was so worried. I kept wondering when he would break through, when he would be my Little N again. The morning came, and very early, I woke to a whole team of doctors surrounding the bed, Dr. Martin not included. They asked how he was doing, and I told him, NOT GOOD. They said he really should be able to go home today, as long as he can drink at least one ounce of milk. They decided to take him off the IV to encourage more hunger from him. If the diapers became too dry, they would simply put him back on the IV. They also told me that today, many babies would be coming into the recovery area, some with bad infectious diseases, so they really wanted to get Little N home. Wonderful.

Since I had the whole team there, I asked how they repaired the palate. I wanted specifics. So far, all I heard from Dr. Martin is that they were going to "close the bridge," so in my mind, it just meant that they sewed the middle together. But after the swelling went down some, I noticed he had stitches around his gum line. One of the doctors got a piece of paper and drew how the repair was done. He described that they first CUT OUT the two sides of the palate from the gum line. They then sewed those two pieces together down the middle. And then they stretched the sewed palate out to the gum line again. But since his palate was so wide to begin with, they had to fill the middle with a little collagen. I HAD NO IDEA. I felt horrible for Little N. No wonder he didn't want to drink from his bottle! I just could not imagine how much pain he was feeling, especially as the medicine started to wear off. This is what I mean, doctors don't give you all the details.

After they left, I made the decision: I was going home today. Little N was going to eat. I was not staying in that hospital one more night. So I worked with him, tirelessly, and by early afternoon, he finally got down one ounce of milk. But then the next time I tried, he didn't want it. It was still hit and miss. Some of the doctors came back to check on him, and I told them I really feel like he's ready to go. By that time, he was back to his usual self--happy, playful, smiling, just not wanting to eat. His diapers were barely wet. But I knew I could do it. I got that same feeling I had when I was in the hospital after his birth--I knew I could care for him now. Somehow I convinced the doctors that we could go home, despite him not eating much yet. So my husband met me at the hospital, we got our pain medicine from the pharmacy, and off we went, leaving behind the morphine, the nurses who could come at a moment's notice, the IV fluids. I tried to remain hopeful.

On the 30 minute drive home, I tried feeding him once again. And then something amazing happened...he took the bottle in his hands, for the first time ever, and produced enough suction to drink a little bit on his own. After seeing this miracle, I knew we could do it. And for the most part, we managed okay....until the next surprise sent me into complete panic....

Sunday, February 9, 2014

Little N's First Year, Part 6: The Surgery is Done

August 19th came. No phone calls from Debbie, the surgery coordinator. Only one phone call, actually. From the hospital, to confirm the surgery, for 7 am the next morning. We had to arrive by 5:45 am. No solids after midnight. Only water or clear liquids up until 4 am.

Little N, by that time, was sleeping through the night, so we woke him shortly before leaving at 5 am. We got there by 5:45, and were given a buzzer, the kind you get at a restaurant. We were buzzed back to a hospital staffer who had some papers to sign, the first of many. He sent us up to the waiting area where many other families were. After waiting about 15 minutes, a nurse called us back to a holding area lined with hospital beds, divided by curtains. I instantly remembered this room: J-babe was here a few years ago after getting an MRI/EEG. This was the room where they prepped patients for surgery or procedures.

Little N still couldn't eat, but we kept him as happy as we could. We had to change him into a tiny hospital gown. Nurses rushed back and forth, asking questions, admiring his red hair and blue eyes. At the end of this long holding room, there were hospital doors. The kind that swing open quickly--no doorknobs. I could see dozens of doctors walking the hallway behind those doors. I searched for Dr. Martin. We were told that there had been times where a patient was in the holding room, and then found out Dr. Martin had to be sent to perform another surgery. The closer it got to 7 am, the more concerned I became. This can't happen to us. We've already been canceled twice. The surgery will happen today. It will.

The anesthesiologist came first, to explain the procedure. Then the ENT came. Then a doctor wanting us to try using Tylenol as a pain reliever after the surgery to see if it would be comparable to what they usually use for pain (which I didn't even know yet). There was such a rush of people, that I somehow agreed to the study by this doctor, not knowing what I got myself into, but thinking it must all be part of the process. What I began to realize in that holding room is just how much the doctors WITHhold from you before the surgery. All we "knew" is that Little N would recover fairly quickly and be drinking the bottle within a few hours. I assumed the repair would involve simply sewing the cleft together down the middle of his palate. We would soon discover much more about the procedure...

One by one the patients around us were wheeled away. I found myself getting very emotional as each one left. They gave a light sedative to Little N, and within a few minutes, our wriggly, squirmy baby lay still on the hospital bed, eyes open, looking very calm.

And then Dr. Martin arrived! He went over the procedure again, and reassured us that it would not take more than an hour, and that Little N would bounce back within a few hours after the surgery, as most of his patients did. Routine for him, brand new to us. He told us to go downstairs to the surgery waiting area and when they were done, he would come talk to us. And away they went, with our Little N. Instead of tearing up, I felt at peace. I knew everything would be okay.
Down in the waiting room, there was a large screen, much like an airport terminal, with lots of numbers and symbols. We were given a certain number for Little N to watch on the screen. The symbols represented what stage the surgery was in: prepping for surgery, surgery in process, surgery complete. So as the minutes ticked by we could watch the progress. Sitting across the room was a very large group of people or family, looking very distraught. From what I could tell, one of their children was in surgery and hanging on to dear life. I began to feel even more grateful that ours was just a routine surgery, and even thought of the times we had been cancelled over the summer. Life or death was certainly more important than routine.
An hour passed, and the surgery was still in process. And then another half hour. We tried to reassure ourselves, remembering that he did have a wide cleft, after all. Finally, at almost 2 hours, the screen showed "surgery complete." Dr. Martin came out with a few others to report on the surgery. He said it went very well, but took longer because of how wide the cleft was (we were right). He had to use some collagen to fill in some of the palate. But Little N was doing well and was in the recovery room. He said we could see him right away. So off we went, to see our little baby boy, made new through a surgery. But I was not prepared for what I saw...

Tuesday, February 4, 2014

Little N's First Year, Part 5: More Pre-Surgery Surprises

School started again on August 12th. J-babe entered 3rd (we held her back a year), Big B entered 2nd. On the first day of school, I had to take Little N to the ENT (Ear Nose Throat) doctor for pre-op. Part of the surgery included placing ear tubes to assist in the growth of the ears; routine procedure for cleft palate babies. Placing the tubes only takes about 5 minutes, but the baby has to be under anesthesia, so they do both at the same time. The strange thing about this appointment was that with the other two previous scheduled surgeries, I was never called by the ENT to schedule a pre-op, only for the 3rd surgery. And the ENT told me she wasn't even in town on July 31st, so she seemed puzzled as to why they would have scheduled it then. But I tried to put all this information out of my was in the past, and I could not change it, no matter how much I wish I could. The ENT appointment went very well, and they were on track for the following week. Check that off the list.

On the second day of school I got a surprise phone call from the geneticist of the craniofacial team that nearly sent me through the roof again.

"We got the microarray blood test results back, and it turns out that Little N has a microduplication of chromosome 22. We weren't expecting to find anything, so we are surprised. Because of this new information, I need to call the surgeon to make sure the surgery can still take place next week. A microduplication of chromosome 22 could mean he has heart issues, or kidney issues. And this could affect his ability to receive anesthesia."

While this news came as a shock to me, all I could think about was the possibility of having the surgery pushed back. So I first told her we had already been rescheduled twice this summer, and really could not bear to have it happen again. She said she would talk to Dr. Martin. Then she explained more about the microduplication, which made Little N even more unique. Apparently his duplication was much smaller than they normally see, but that did not mean he could have some of the syndromes or developmental delays that come with it. Up to this point, Little N was right on track, even ahead, of all his milestones, so no one was concerned, including me. What they thought, for the time being, was that this microduplication only caused the cleft palate. But what's even more interesting is that this duplication is usually inherited, and children from the same family can have it, but exhibit totally different symptoms. Because the symptoms of developmental delays, etc., match J-babe's, we are in the process of having her see a geneticist to determine if she has the same duplication. And if we have any more children, there is a 50% chance they will inherit the same duplication. But that is another post for another day...

We heard back from the geneticist. Some good news: Dr. Martin wanted to proceed with the surgery. Huge relief. Now the only thing standing in our way of the surgery actually happening was another emergency for the surgeon. We found out that Dr. Martin is highly specialized and can perform many types of craniofacial surgeries, so he is often called in last-minute for emergencies. The doctors in the main hospital will get a patient in the ER, and after determining the problem, go to a list where they choose the exact surgeon they need. Dr. Martin's name came up a lot because of how good he is. So we had the best surgeon...but we wouldn't be able to testify of that until the surgery actually happened!

My emotions the week prior to the surgery were a jumble of many things...fear, worry, uncertainty, frustration, but mostly hope. We prayed and prayed that this surgery would happen for Little N, that he wouldn't be passed over again. We knew it just had to happen this time, that the chances of being cancelled three times were miniscule. We called the plastic surgery office multiple times to confirm, and confirm again, and again. We did absolutely everything possible, but really, it was out of our hands. What we learned through this process was that you can't count on surgeons 100% for anything, because they are needed for more than just a routine surgery. Little N's repair was not a priority, and could be pushed back at any time. But to us, Little N's repair meant everything in the world. So all we could do was pray, and hope we didn't get another phone call...

Sunday, February 2, 2014

Nathan's First Year, Part 4: The Pre-Surgery

The day was drawing closer...the day on the calendar that made me shudder every time I looked at it. June 19th. Where I would be handing my baby over to a doctor to operate. I've been through lots of trying, uncertain times with my kids, but this surgery had me more worried than anything else in the past. I also sort of wondered how I would feel about him after the surgery, because I'd grown so accustomed to the way his palate was, and the way I was feeding him. Of course I was grateful that his birth defect could be fixed, as I'm sure many defects can't. I was grateful that so far, he had no significant delays that could indicate a genetic abnormality or syndrome. He really only had the cleft, but it had become a part of who he was, in a way. It's hard to describe what I mean, but I just kept wondering how I would feel and what it would be like after the surgery, when he would be made perfect again. With my other kids I had learned to accept imperfections and differences, so to know that Little N's could be fixed almost without blemish was a new concept to me.

Well, the school year ended, for my kids and my husband, and we were now in the final weeks before the surgery. My mom's flight was still scheduled, and we began talking about our plans and preparations. There is also a lot of mental preparation that goes into getting ready for a surgery. I didn't realize how much so until exactly one week before the surgery, when I got a call from Debbie, the surgery coordinator. After answering politely, I heard:

"Hello, I'm just calling to let you know that we have to reschedule next week's surgery. Dr. Martin had a family emergency and will be gone all next week."

Even sitting here right now, trying to find the right word to describe how I felt in that moment, I have trouble. All of the preparation, mental and physical, suddenly comes crashing down. All your hopes for a date that you had been planning for since March are now gone. Now, I've been canceled on before, plenty of times. And those times usually brought an angry tone toward the scheduler, but I would get over it pretty quickly and look forward to the next date they could give me. However, it's not the same when a surgery is cancelled. It's just not the same.

So I try to reason with Debbie without losing it: "What family emergency? We've got everything ready for this surgery! My mom has a flight scheduled! We've made all the preparations! We are ready! How can you cancel on us?" She simply stated that she could not give the reason, but that we had to reschedule, and also remarked, "Well, wouldn't you want to help your family in an emergency? He has a family, too, just like you, and sometimes things come up." She was short, blunt, and to me, seemed downright rude, like she didn't even care what she had just done to our family. Sure, I care about the surgeon's family, but to me, this wasn't about him! It was about us, the patients, who wanted this surgery to happen. She then gave some available dates, and I told her we weren't sure and that we'd call her back. My husband and I just stared, in shock, anger, frustration. We couldn't believe this happened to us. He was one of the best surgeons at the hospital. We decided on a date, July 31st, reluctantly called her back, and that was that. So now we had a new date...July 31st. Just two weeks before school would start again. But first we had to break the news to my mom, who also could not believe it. After my long rant and then her reassuring words, we tried to move on, and just focus on how all this could have happened for a bigger reason than we knew at the time.

So July came, and we visited my family in Utah for one of my sister's weddings. We had a great time. Before the trip, I decided to stop pumping for Nathan. It was such a difficult decision, but I just knew it was the right time. After all, I had planned to pump until his original surgery date in June, and I had made it to July! And because my milk did not freeze well, I had to go directly to formula, which he transitioned to wonderfully.

And so the summer marched on, and July 31st grew closer. Again those anxious feelings returned, knowing that this surgery was going to happen, and soon. My mom rescheduled her flight, we made the preparations again, and we thought there wasn't a chance in the world that the surgery could be cancelled again. We even joked about the possibility, because the chances were so small!

We were wrong.

We got a call on July 30th, one day before the surgery, and again it was our favorite person, Debbie. This time we couldn't get to the phone, and downstairs we could hear on our answering machine, "Hi, this is Debbie. I'm calling to reschedule the surgery tomorrow. Dr. Martin has an emergency surgery he has to perform tomorrow that is a life-or-death matter. Please give me a call--" My husband starts yelling that we're being cancelled on again. I ran to the phone, hands and voice shaking, and interrupted Debbie's message. Once I got on the line, she repeated what she said, and my only response to her was, "Again?" She paused, and I told her that this happened to us just last month. I could tell she was surprised, but still Debbie continued in her matter-of-fact tone, as if I weren't even a real person, "Oh, I'm sorry. But this patient needs this surgery. Wouldn't you want your child to be operated on if it would save his life? Dr. Martin has to do this surgery tomorrow. Let me give you the next available dates."

I don't think she realized who she was talking to. She was talking to a mom of three children who each have or had health issues. A mom of a daughter on the autism spectrum who was turned away by countless doctors for services I knew she needed. A mom who didn't let anyone push her around when it came to her kids. So let's just say the rest of the conversation did not go well. Me on the verge of tears, angry tears, pleading, demanding, that this surgery happen tomorrow. My husband listening in, making rude comments in the background. Poor Debbie. She probably got this every day. But poor us! Now we have been cancelled on TWICE! When I couldn't get through to Debbie, we ended the call, and I promptly threw the phone at the wall. The big kids watched the phone break apart.

I completely lost it. We called my mom, my mother-in-law, and broke the bad news to them. Everyone was in shock, feeling helpless. After regaining my composure, I called the office, and after talking to a few people, asked to speak to a manager. I told them the whole story, how Debbie didn't seem to care at all about our feelings, only cared about defending Dr. Martin. How we now had two cancellations. How Little N's name needs to be flagged so everyone knew that he could not be cancelled again. I even asked if we could use a different surgeon, but we'd only met Dr. Martin. The manager was much more apologetic and understanding. I then called the human resources of the hospital to report the incident. But no matter what I tried, we weren't getting that surgery back. So we scheduled for August 20th. A Tuesday, the second week of the school year. This made things more complicated. My mom could not change her flight again, so we asked my mother-in-law if the kids could stay with her during the surgery, and they readily agreed. My husband would be in his second week of school, too, so he would miss work at the worst time of the year. But we had to do it for our Little N.

Needless to say, our summer was a nightmare, except for the support of our family. My mother-in-law agreed to take the older kids for a day and a night so my husband and I could de-stress from the whole situation. The kids were spoiled by them and got to go to fun places. My mom decided to fly out as planned, and instead of moping around at our house, she took us all to Disneyland to help us forget about it all. Family really is the best. So August 20th...we crossed our fingers...third time is the charm...

Saturday, February 1, 2014

Little N's first year, Part 3: 4-6 months

Pumping and feeding became very routine after the first three months. Little N graduated to a Mead Johnson nurser bottle with specialized nipples that were long enough to seal the cleft palate.

So essentially, he wasn't completely sucking the bottle, but biting down on the nipple to drink milk. The bottle was also squeezable, so I learned how to squeeze right before he would bite down, and it became a rhythm that was so internal, for both of us, so much that I could almost do it in my sleep. While I fed him with one hand, the other was holding the pump on one side, and then I would switch to the other side. So he would eat and I would pump, at the same time. I finally had a system that was working, and I didn't feel so tied down. And I was MORE than happy to be done with the syringe/tube/pacificier feedings! I began to see the freedom that bottle feeding can bring, as I fed him in his carseat at grocery stores and other places, and he was also getting my breastmilk. The best of both worlds!

But bottle feeding can have a downside. During this time, he somehow developed thrush all over the inside of his mouth. My guess was I wasn't sanitizing the pump devices and bottles/nipples well enough. I felt so bad for Little N! I boiled all the feeding/pumping equipment each night, but the thrush persisted. He was prescribed an oral medication that did nothing. Finally, his pediatrician at the craniofacial team told me to get gentian violet over the counter. This stuff is pretty much bright purple and stains anything it touches. I put just a few drops in his mouth and his entire mouth turned bright purple! But after a day, it wore off, and his thrush seemed to disappear after a few applications.

His doctor visits continued to accumlulate. He had to be weighed every two weeks, seen by the craniofacial team every two weeks, and then still have his regular checkups. I felt like I lived at the doctor, but I just loved all the support I had for Little N, every step of the way. However, there was one doctor appointment I was dreading: the plastic surgeon. The end of March 2013, my husband and I were scheduled to bring Little N to meet the surgeon who would eventually operate on him. I was so nervous to hear what he would say.

The day finally came, and Little N was almost 4 months old. Dr. Martin took a look at Little N's palate and noted that it was wider than ones he usually operated on, but still thought one surgery would fix the problem. He then proceeded to ramble on all the statistics, as doctors do, and of course we were listening as intently as we could. I had my list of questions ready, and remember asking him how he would be able to eat after the surgery. He said amazingly, most babies bounce back very quickly and just a few hours post-op are able to drink from their bottle again. He said about 1% of them end up having to stay longer than one night, that 1% of them end up with a fistula, or small hole, after the stitches heal. Only 1%. There was no way our little guy would be in that 1%, we were sure. And Dr. Martin said he's performed over 200 of these surgeries, so we felt confident in his abilities and he said he would see Little N again right before the surgery.

The next step was to schedule it, which we were not prepared for, but we sat down with the surgery coordinator, Debbie, and chose June 19th, a Wednesday. My husband is a teacher and school would be out for him, the kids would be out of school by then, so it sounded like the perfect day. Little did we know how well we would get to know this Debbie, and the entire plastic surgery office that summer...

So things were starting to fall into place for us. We began thinking about that date, June 19th, often. My mom scheduled a flight to come help during the surgery. Little N's weight gain slowed more and more, as he could not really eat any solids with the cleft. I continued pumping for him and planned to do it until the surgery. Things seemed great, until just before the surgery...