A Different Day at a Different Park

There’s a lot to catch you up on!  It has been almost two months since Atticus’ interstitial laser treatment on his tongue, which was performed on 1/29/2014.  The general consensus among doctors, nurses, and us seems to be that his tongue is slightly smaller since the treatment – which is great news.  We weren’t expecting major shrinkage, but any shrinkage is obviously better than nothing.  We always knew that there would be no quick fix for lymphatic malformation and that Atticus would need frequent laser treatments on his tongue and lip.  There is also consensus that the surface laser treatments on his lower lip are not reducing the bulk of his lip.  Atticus’ plastic surgeon has decided to go ahead and schedule a resection surgery on his lower lip.  They will make an incision on the inside of his lower lip and remove as much of the extra tissue as they can.  They will also tighten the muscles of his lower lip.  Hopefully, this will help him to close his mouth.  He can close his mouth, and actually has been closing it a lot lately, but it seems like his lip sort of hangs down when it’s at rest, and that he actually has to work to close his mouth.

We had a couple follow-up appointments in the past few weeks – one with otolaryngology (ENT) and one with plastic surgery.  They are both really happy with the progress that he is making.  The progress is slow, but any progress is good progress!

In other news, after having his mouth called ‘disgusting’ two weekends in a row by two different kids at two different parks, I just felt beaten down.  My mind started to wander and I began to think, “is this what he is going to have to put up with when he goes to school?”  Everywhere he goes, is he going to be in danger of other kids using ugly words to describe his LM?  Before my mind wanders off too much, I need to make a conscious effort to pull myself back in, stay in the moment, and not start predicting the future.  I can allow myself to be upset – I am only human – but once I get it out and the moment has passed, I need to pull myself together and keep living life in the moment.

I had my faith in children restored though this past weekend.  We once again found ourselves at a park in Charlotte.  This time we were at Latta Park in the Dilworth neighborhood.  We were just sort of walking through and there were lots of kids there.  A little girl, maybe around 6 or 7 years old came over to me and Atticus.  “Excuse me,” she said in a polite manner.  “Yes?”  I answered.  “What is wrong with his lip?”, the little girl asked.  I answered, “well, he was born that way.  His tongue and lip are bigger than normal and that is just the way he was born.”  “Oh,” she replied, “he is very cute.”  And that was it.  She asked a couple other questions, like, “Can he talk?”, etc.  This little girl expressed genuine curiosity and genuine understanding.  She was polite and kind.  Her parents are doing something right.  Thank you little girl at Latta Park.  You made my day!

Valentine’s Day 2014

It is Valentine’s Day, which I really don’t think is a big deal since it’s important to show others that you love them everyday, but it’s still fun to have a holiday or a reason to go out to eat.  I think back to last Valentine’s Day – our first with Atticus – and how we spent it at Levine Children’s Hospital in Charlotte.  It was the first time Atticus was sick and he had bronchiolitis which swells the bronchioles that lead to the lungs and can be really serious in kids under age two.  Since he has a trach and was only 9 months at the time, his pediatrician admitted him to the hospital especially since his 02 saturations were low.

I remember thinking, OK this probably isn’t that serious, but when they told me we had to go to the hospital via ambulance, I realized that it was more serious than I had thought.  I thought we would just drive him over to the hospital.  That was my first time in an ambulance – another first that Atticus would experience way before his mom.  He was 9 months and I was 30.

My parents were visiting us from Pennsylvania for the week.  They arrived on a Saturday morning and we went out to Concord Mills and to Cabo Fish Taco on Saturday evening.  By the following Tuesday, Atticus was in the hospital and on oxygen.  Those days that he was in the hospital, we joked with my parents how he was just fine on Saturday when the picture below was taken and we jokingly referred to that picture as “simpler times”.

At Cabo Fish Taco 2/9/13

At Levine Children’s Hospital 2/14/13

The hospital stay cut into my parents trip a bit, but what are you going to do?  At least they were there to help and support us, and got to see another North Carolina hospital :).  Atticus spent his first Halloween in a hospital, his first Valentine’s Day in a hospital, and almost his first Thanksgiving.  It was a hectic first year, but we made it through.  Things are looking a lot better this Valentine’s Day.  I don’t think we are going to fight the crowd to go out to eat but we may do a family night at Whole Foods, which has become a new favorite weekend outing for us.

If you’re wondering how grocery shopping can be a fun family outing, then you must not have ever been to a Whole Foods before.  That is all for now.  Have a great Valentine’s Day and don’t eat too much candy!

We’ve Come so Far, and Atticus’ Busy Schedule :)

Atticus turned a year and a half this past Monday.  As I reflect on the previous 20 months, I am so grateful for how everything has turned out.  I know that not every family is as lucky as we have been, and I will never take that for granted.  When we first found out that there was an ‘anomaly’ with our unborn baby, our whole world turned upside down.  Atticus’ enlarged tongue could have meant anything from an isolated random event to a severe genetic disorder.  Upon learning that this anomaly was a lymphatic malformation, we could breath a sigh of relief, although this would come with its own challenges.

We’ve come a long way from sitting down with a geneticist 20 months ago, going over everything that could possibly be wrong with Atticus.  Here he is, 20 months later, eating by mouth, drinking from a straw, and smart as can be.  He amazes me and Brian and his nurses on a daily basis.  It’s amazing the things that he picks up on.  He brushes his teeth, knows how to take his HME off his trach when he has to cough, and even tries to do his own trach care!  The other day he grabbed his shampoo and made the motion as if he was putting some in his hand and started pretending to wash his hair.  When I comb his hair, he grabs the comb and does it himself.  When I am unloading the dishwasher, he takes out his bowl and spoon and starts stirring.  He’s very independent for a 1.5 year old – and don’t try to hold his hand when he is walking outside – he is too big for that!

Atticus walking through the neighborhood.

Atticus has been really busy lately.  He had a visit from Nana and Grandpa (Brian’s parents from Pennsylvania) back in August.  Jennifer (a longtime friend of mine) and her son Cooper (3 years) came to visit for a weekend in September.  Cooper introduced Atticus to the movie Cars and Atticus is now collecting all of the little cars (they are his new favorite toys).  Don’t worry though, sweater cat has not taken a backseat.  Atticus still sleeps with sweater cat ever night!  Grandma and Grandpa (my parents from Pennsylvania) visited last week and had a ball with Atticus.  Atticus loved sharing his cars with them and picking out books for them to read to him.  They also treated us to Disney on Ice – which was great – enjoyable for kids and adults.

This past Sunday, we met up with another family (who lives about 3 hours from Charlotte) whose son also has lymphatic malformation.  This was the first face-to-face meeting with another child with LM that we have ever had.  It was so exciting to see Atticus with another little boy who has gone through so many similar things.  Because of the rare nature of LM, this was quite an amazing opportunity for us to connect with a family who can relate to our journey.  I can see Atticus and this little boy becoming life-long friends who will always have a special bond.

Atticus’ busy schedule continues as we travel to Brooklyn, NY to visit Aunt Maria and Uncle Billy.  I can’t wait for Atticus to experience his first flight and to walk up and down the streets of Brooklyn acting like he owns the place!

It’s Amazing How the World Works

It’s funny how things happen – how the world has a way of bringing people together.  We’ve been in Charlotte for a little over a year now and it was time for me to find an OB/GYN here.  I didn’t do my normal method of just picking a doctor based on location or convenience (although that was still a factor).  I really researched this one.  Especially since my experience having Atticus was nowhere near ordinary, I really needed to find someone who would listen to my story and be sensitive to my needs should me and Brian decide to have another baby.  I wanted my new doctor to be a woman, not be too young nor too old.  I researched how long each doctor has been in practice and where they went to medical school.  Finally, location mattered too.  Preferable close to work, since if we do have another baby, I’d be going to my appointments from work.

I finally found someone who looked good and I went to my appointment.  I explained everything to her – the ultrasound at 32 weeks with the large tongue, the fetal MRI, the EXIT procedure, the tongue reduction surgery.  I even went prepared with my print out explaining the EXIT procedure just in case.

I was surprised at the doctor’s look of recognition when I mentioned tongue reduction.  She explained that her best friend has a daughter with Beckwith-Wiedemann Syndrome and that this child was also born with a large tongue and has had a tongue reduction surgery.  Wow, I thought.  What are the odds of this.  We talked about being grateful for these kids and how well they are doing, and how she sees so many patients who really don’t know how good they have it.

The doctor consulted with her best friend to see if she would be interested in talking with me.  She was.  We met today for lunch and talked about our amazing children.  Her daughter is doing extremely well.  We talked about our experiences with tongue reduction surgery.  I never thought I’d be having this conversation with another mom over lunch.  We compared before and after pictures of our children, before and after tongue reduction.  She knew the feeling of trying to snap photos when the baby was holding their tongue in.  Not many parents know that feeling.

It’s interesting the way the world works.  I researched and researched my Charlotte OB/GYN and she connected me with a mother who I could talk to about things that no one else would understand.  This is something to be grateful for and I’m once again amazed at how things come together.

Tracheostomy and Tongue Reduction Surgery

This post will cover Atticus’ progress after leaving St. Louis Children’s Hospital NICU up until December of 2012.  We returned to our then-home, Champaign, IL, on May 18, 2012.  Doctors felt that Atticus might be in NICU for months learning how to eat, but since he proved that a big tongue was not going to get in the way of eating, they discharged him after only 11 days.  Brian’s mom, Pat, was staying with us for the month following Atticus’ arrival home.  We had a good time.  I’ll always remember our ‘movie night’ tradition.  How many Alfred Hitchcock movies did we watch in that month?  I’m not sure, but it was a lot!

On August 1, 2012, we packed up Atticus and our two cats (Mr. Sprinkles and Oliver) and drove over night to our new home of Charlotte, NC.  Atticus’ Ear Nose Throat (ENT) specialist  in St. Louis gave us the names of a few ENTs in North Carolina.  I did my research and decided on an ENT at Wake Forest Baptist Medical Center in Winston-Salem, NC.  I figured that if we didn’t ‘click’ or if this was out of the doctor’s realm of expertise, we could always try one of the other doctors on the list.  Wake Forest Hospital is about an hour and a half from Charlotte.  Back in the Midwest we were used to driving three hours from Champaign, IL to St. Louis, so and hour and a half seemed like nothing.

We met with Atticus’ Wake Forest ENT on August 13, 2012.  It was always a concern that we would get to the doctor and he would look at Atticus and say, “I have never dealt with this before.  I’m sorry, but I can’t help you.”  He didn’t though.  In fact, the ENT proceeded to tell us about another patient of his – a little boy – who had just undergone a tongue reduction surgery the prior year.  This little boy also has lymphatic malformation of the tongue.  I immediately felt better knowing that this doctor had seen this before, and was involved in other tongue reduction surgeries.

That day, we also met with a Plastic Surgeon at Wake Forest and she also seemed really confident in her ability to treat Atticus.  I liked their team approach.  The two of them (ENT and Plastic Surgery) would be Atticus’ main team of specialists.

Atticus was put on Propranolol, a medication typically used to decrease blood pressure  Propranolol has had good results in shrinking hemangiomas.  Atticus did not have a hemangioma though, but his doctors still felt it was worth trying.  It was pretty clear after a couple weeks that the Propranolol was not shrinking his tongue.  I wasn’t surprised.

At an appointment with ENT in late September of 2012, Atticus’ doctor dropped the bomb that he wanted to do the tongue reduction surgery soon, and by soon, he meant the following month.  We had still been thinking in the St. Louis model of not doing anything until after Atticus was a year old.  Not only did they want to do a tongue reduction surgery so soon but they also wanted to do a tracheostomy a week before the tongue reduction to ensure that there would be a stable airway during and after surgery, in case of major swelling.

That appointment really sticks out in my mind.  It was a lot to take in, and we just were not expecting this to move so quickly.  The idea of a tongue reduction surgery was a lot to digest.  I had never heard of anything like this before and it sounded rather barbaric.  A tongue reduction basically involves cutting a pie-shaped portion out of the middle of your tongue and sewing the sides of the tongue back together through the middle.  If you are imagining that being done on your own tongue, now imagine your tongue is about five times thicker.  Atticus’ tongue is a lot thicker than a normal tongue, so that is a lot of tissue that needs to be cut through and stitched back together.

Atticus’ doctor talked to us about the high risk of blood loss.  He explained that there is a large vascular component to Atticus’ malformation.  There last case of this was mostly lymphatic and since Atticus’ malformation is so vascular, they were worried about bleeding.

And then there was the trach.  I had thought that we passed that hurdle.  We were nearly certain that Atticus would be trached right after birth or at least before leaving the NICU.  He proved that he could breathe on his own, so a trach wasn’t necessary at that time.  The reason for the trach now was because of the possibility of swelling after surgery.  I don’t think the idea of Atticus getting a trach really bothered me until the ENT said the words, “I want you to understand that Atticus won’t be able to make sounds once he has the trach, at least at first.”  That was it.  I started to cry.  I remember looking at Atticus in the doctor’s office.  He was on my lap.  He had just recently started making sounds and now that was going to be taken away.  We wouldn’t even be able to hear him cry anymore.

My parents came to Charlotte to be with us and help out during the tracheostomy and tongue reduction surgery.  We all drove up to Wake Forest Hospital very early on the morning of October 31, 2012.  On his first Halloween, Atticus was put to sleep and his doctor inserted a trach into his neck.  While he was sedated, they also did an MRI to look at the malformation and see if it had spread at all and to see if it was still isolated to the front of the tongue and lower lip.  It took a while to perform the trach and do the MRI but finally we were able to see him.  He was in the Pediatric Intensive Care Unit (PICU) on all sorts of machines and tubes.  Seeing him like that was more intense than I was expecting.

The sedation started to wear off after a while and I remember Atticus looking up and starting to cry.  Only, no sounds were coming out.  I don’t even know how to describe it besides unsettling.  To see his face crying but not hear the cries…made me cry.  The Plastic Surgeon stopped by his PICU room that evening and she could tell I was upset.  I can’t even remember what she said but I remember her putting her arm around me and saying something that made me feel better.

Atticus was moved to Intermediate Care after a couple days and me, Bri, my mom, and dad all spent the next week hanging out with Atticus in his hospital room.  He would need to stay hospitalized for the next week while his tracheostomy healed and then the following Wednesday, November 7^th would be the big surgery – the tongue resection.

A few days following his tracheostomy, he was back to his normal self (except now breathing through a trach).  He seemed to get used to the trach very quickly.  Brian and I took the next week to learn everything we possibly could about trach care, including changing a trach which involves taking the trach completely out and inserting a new one.  That seemed really overwhelming at first but after a few times, it wasn’t so bad (now it’s so routine that we don’t even think about it).  All of the nurses in Intermediate Care quickly fell in love with this truly bouncing baby boy (we brought his Jumperoo to the hospital so he’d have something to do for the week).

Then, on November 7, 2012, Atticus underwent his tongue reduction surgery.  After trying to keep his mind off of not eating all day, they finally took him back to the operating room around 4pm.  The surgery took around two hours.  Me, my mom, my dad, and Brian were all sitting in the waiting room when the ENT and plastic surgeon came out to tell us how everything had gone.  Atticus had bled…a lot.  Atticus needed a blood transfusion, but he was doing well.  They removed as much of his tongue as they possibly could without compromising his tongue’s range of motion and other things.  We were immediately relieved to hear that everything had gone well.  The only thing that worried me was the risk of blood loss, but now that my fears were put to rest on that, I knew that everything would be OK.

It felt like forever, but we were finally able to go back to see him in PICU.  He was heavily sedated and also on paralytics so that there would be no risk of him messing with or trying to pull out the stitches from his tongue.  We were told to expect a lot of swelling and that it could take months for his tongue to go down to the size that it would now be.

Atticus spent three entire days completely sedated.  On Saturday, they started easing up on sedation and paralytics.  By Sunday, he was awake, but in a lot of pain.  I can’t even imagine the pain that he must have been feeling.  He had just had more than half of his tongue cut off and sewn back together.  The hardest part post-surgery was seeing him in so much pain.  Since he was so young (6 months exactly on the day of surgery), there was no way he could verbalize his pain, but you could just tell.

It was during that time at the hospital that I realized what a strong baby I had given birth to.  He had already gone through more in his 6 months than most.  He spent a total of three weeks in the hospital and ate through a feeding tube for about a month after surgery.  We were told that the recovery would be tough and that there would be bumps along the way.  Atticus did so well though.  The stitches all came out naturally.  Everything stayed intact, and the swelling eventually subsided.

He is a true fighter and always has a smile on his face no matter what.  Even with feeding tube, trach, arm restraints, and stitches in his tongue, he still smiles through it all.

11/23/12

12/6/12