Sayonara Pins!!!

How long has it been since I updated this blog???  3 weeks…what a slacker.   Let’s just say I have good reason and that it’s been ummm…somewhat exciting.  Mommy probably wouldn’t use the same choice of words, but hey if you haven’t figured it out yet I’m the glass is half full kind of gal. 

The beginning of May started out with a bang.  I got that nasty bug, the Rhinovirus.  Yeah well, I kicked its butt if I do say so myself.  Sure I had coughing, sneezing, fevers, breathing treatments, irritability…yadda yadda.  However, I didn’t need oxygen and no trips to the hospital, which is a major plus for a kiddo with a trach.  I was back partying it up with my friends here at the Ronald House in no time.  Then my mom thought she’d join in on the fun and ended up in the ER with a pinched nerve in her neck…poor thing had to borrow some of my codeine (jk…she got her own…lol).  This past Monday I was scheduled to go to the operating room for the second half of my surgery with Dr. Matthews, but I had something else in mind.  I started spiking high fevers on Mother’s Day and kept them coming until just a couple days ago.  The culture came back with overgrowth of pseudomonas, another nasty bug.  But with the help of Augmentin I’m fighting that too.  [Sidebar]…Have I ever told you how much I hate antibiotics?  I’m on my 4^th cycle in a little over a month and I’m just about tired of it.  It makes my belly ache and causes all sorts of icky side effects.  So instead of going to the OR on Monday lucky me got to make a trip to the ENT down in Charlotte.  And even luckier me got to get scoped through my nose, mouth, and trach…all while awake mind you!!!  Can you sense my sarcasm??  The nurse who helped with the procedure apparently was formerly a member of the WWF…well, she had to be in order to hold me down.  They’d all be crazy to think I was just gonna lie down a take it.  Anyway, nurse Jessica won in the end (I went easy on her) and the doc was able to get some good views of my airway, throat, and voicebox.  Because I was awake he got to see my functionality as well.  The good news is that I am swallowing.  Yippee!!!  Not only was there no pooling of saliva at the back of my throat (pooling would indicate a poor or nonexistent swallow), but also he actually watched me swallow a few times.  The other good news is that my voicebox is normal.  Woohoo!!!  It’s awesome to hear the word “normal” once in a while.  The ok news was that though the base of my tongue is no longer covering my trachea completely, it still is large relative to the small size of my jaw and is still unfortunately obstructing my airway.  This trach is probably going to be with me for some time, at least until I grow more or my next jaw distraction surgery.  Yuk…I don’t even want to think of that.  The bad news is that I have silently been suffering from acid reflux for who knows how long.  I mean I knew it was happening, but you bigger people had no clue.  The doc saw inflammation and cobblestone-like burns and blisters in my throat as soon as he got the scope in.  I now have to add Prevacid to my list of meds, but Dr. M is going to test me to see if food allergies are the cause of my reflux.  I sure hope I’m not allergic to pasta, because I hear my Nonno’s sauce is killer and I’ve been agonizing over the day I can finally have some.    

As for my second surgery, it is now scheduled for this Monday, May 21^st.   The ENT will be doing a bronchoscopy and will replace my ear tubes.  Then Dr. M will come in and remove the pins that are sticking out of my jaw and causing such a nuisance.  He will have to go through the original incisions on the inside of my mouth so I will be admitted as discomfort and swelling are expected.  Please send up a few prayers that the surgery goes smoothly and without complication, and that I have minimal pain afterwards.  Even though I am a total trooper I still need the Lord’s hand on me and as many angels watching over me.  Thank you:).  Also, I just want to say a big thank you to my nurses, Michele and LeeAnn, for helping take care of me these past few weeks.  I am one lucky gal to have such loving and compassionate nurses and friends in my life.  Mom says she wouldn’t have made it through the days (sometimes hours) without you both.  You ladies ROCK!!!  Thank you as well to my Aunties, Gina and Janet, and my Nonni and Nonna for coming down to help my mom and more importantly to visit with ME.  You spent time playing with me, providing distractions from all the yucky stuff they have to do to me, and you provided much moral support to me, my mommy and daddy.  

With love and gratitude,

Ella Bella

P.S.  Mom and Dad, I know my addition to the fam has made your lives way more interesting than before.  I know you are both exhausted and overloaded with stress, but just think of how many smiles I bring to you everyday.  Let’s face it…I am totally worth it.  Teehee.

Me and my new pal, Cody.  Thanks for the dollie!

I can be Minnie 

But, I'm the cutest playing the Tooth Fairy

You think they'll let me take this hat home as a memento?  Doesn't really go with the pearls, but what the heck...

If you look closely (enlarge) I got my first face painting ever.  It's of a lovely flower...and you all know how I love pink :)

HAPPY BIRTHDAY, DADDY!!!  I won't share with everyone how old you turned today, but I will say it's a big one.  I love you and miss you oh so much.  Mommy and I can't wait to see you.  

xoxoxox, 

Ella

Still dancing...

Hi Everyone,

It’s me, Ella, and I’m back…  I took a little hiatus from writing because well I’ve kind of been going through a lot lately - a lot more than any adult could handle (at least that’s what I hear).   My daddy keeps saying he would be a crybaby if he had to go through what I have to and for some reason I believe him.  How is it that the little package that is me is stronger than some of you full grown folks?  I just don’t get it. 

Anyway, let me bring you up to speed on the past week.   I’m not gonna lie or sugar coat anything, the week had its ups and downs.  In terms of how I was feeling, Monday was good, Tuesday was bad, Wednesday was ok, and then Thursday came and it was horrible.   It was one of those days that gets worse as the day goes on and then seems like it will never end.   Mommy needed to let out a big ole cry that night and then she felt a little better.   She absolutely hates to see me in pain and uncomfortable so after a while it really gets to her - couple that with sleep deprivation and trust me it is not pretty.  Thank God she had Miss Pat here to help her this past week.  Though it was still tough with just the two of them I was so pleased to have someone caring for me that I know, trust, and love.  Thank you from the bottom of my heart for taking the time out of your life to be with me, help nurture me back to good health, and be there for both moral and physical support for my mommy.   

On the medical front, my jaw is moving out quite nicely.  My bottom jaw is not yet in alignment with my top jaw, but it is getting close.  Dr. M wants me to have a slight underbite because he knows that it won’t be long before I outgrow my new jaw, since for kids with Nager their jaws don’t typically grow on their own.   Everyone is already commenting how much bigger my smile is.  And they thought I couldn’t get any cuter??  Teehee.  The bad news is that my pin sites have gotten much worse.  Mommy got especially nervous when she saw raw tissue bulging out of my pin sites and green drainage.  Dr. M thinks I have something called fat necrosis and put me on Clindamyacin in case there is an infection brewing as well.  It is quite gross and I will spare you the details, but for those with a strong stomach feel free to inquire on your own.  Dr. M made sure to tell us that fat necrosis is something that is very uncommon.  Mommy immediately said, “Of course, it is...isn’t everything with Ella!!!”  What she doesn’t understand is I’m just trying to keep you all on your toes.  It’s not easy finding ways to be different…I work hard at this.    

It is way past my bed time so I better hit the crib, but before I sign off I want to tell you I had an amazing weekend with visitors from New York.  My nurse and friend, Caroline and her husband, Dave, came to see me.  Having them around made me happier than I’ve been in a long time and brought many smiles to my little face.  It made me feel at home again or rather it brought a small piece of home to me.  Charlotte may be nice to many, but to me I’m in a strange city, living in a strange house, and surrounded by strange people.  Coming out of major surgery and then being thrown into a foreign environment has not been easy on me.   Seeing familiar faces who love and adore me brought me so much comfort.  Thank you, thank you, thank you.  You guys made my week and mommy’s and daddy’s too :).   

P.S.  One item I can cross off my bucket list is making a whole group of strangers get up and dance.  We grabbed a bite to eat to celebrate Dave’s birthday last night.  Of course I made friends with another table and demanded they all get up and copy my dance moves.  Wouldn’t you know…it wasn’t long before I had them all doing the swim dance.  What suckers!  Lol.

Peace out y’all,

Ella

(What?…I’m in the South now)

I told you the South is growing on me...

 Love me some mashed potatoes

Still a toddler, still getting into trouble :P

Jinxed it

I definitely spoke too soon when I said Ella's pain was manageable.  In my head I thought it was crazy that she didn't need major pain meds only days after getting her jaw broken and a metal device put in.  But, then I just thought maybe we got lucky or maybe she has an insane tolerance for pain...boy I was in for another rude awakening.  Starting Tuesday she became extremely irritable to the point of being inconsolable.  During the night out of the blue she was thrashing kicking and punching, throwing her body this way and that...not at all typical of Ella.  Tylenol and Motrin were just not cutting it; we had to go back on the narcotics.  And while she was a completely different baby after that, she did not appreciate the side effects that soon followed.  It's a double edged sword - you either give the meds and suffer the icky side effects or you let her endure pain and truthfully I'm not sure what is worse :(.  To top it off her pin sites have not shown improvement.  They have become increasingly red and now are oozing yellow - never a good sign.  We saw Dr. Matthews today and he gave us a special spray to put on them, but said that we may soon have to put her back on antibiotics to prevent infection from going into the bone.  So between the pain from the pin turning and thus bone spreading and the skin inflammation around the pins she is not a happy camper.  When the meds are fully kicked in she has her good moments (see pics below), however we know very well when they are starting to wear off.  Erik and I are so inspired by her and honestly amazed that she doesn't hate us yet.  All day long we have to do crumby things to her and somehow someway she still manages to crack a smile or give us a smoochy kiss.  Ella is going through so much and though she has definitely become more feisty since the surgery it has not dampened her spirit.  She is like the mayor here at Ronald McDonald with visitors and guests alike gathering around her and responding to her every sign.  It's funny because even though they don't know sign language they still figure out exactly what she wants them to do.  Ella even has a dance buddy, Noah.  The two of them are shaking their booties throughout the house and the more he does it the more she copies...it is absolutely hilarious.  The other night she didn't want to come up to our room, and Noah piped in and said "She can sleep in my room tonight."  Erik put the breaks on that one right away.  Then Noah asked if he and Ella could email each other and Erik said yes, but her daddy will be screening the emails first...lol.  The Ronald McDonald house has been wonderful.  Ella gets to be around other kids and we get a cozy and welcoming environment.  It is especially great to be in a place where people understand what you're going through, but we are looking forward to seeing familiar faces soon.  

Anyway, I'm gonna run to catch some rest while I can.  Thank you for all your encouraging emails and comments and of course all of your prayers.  Please continue to pray for Ella's pain to be controlled and her pin sites to heal.  And if you could throw in one for sleep for Erik and I that would be wonderful too ;).  

Love and God bless,

Nina

Chillaxin after Codeine

 Ella and Noah

Ella and Katie

Our sweet lil kittie 

Frying up an elephant...yummy

One Day at a Time

Hi Everyone,

I'm sorry it has taken me so long to write an update, we have been overwhelmed taking care of Ella these past few days.  Not enough time to eat or sleep, forget about think and type.  She was released from the hospital on Saturday afternoon and since then we've been back at the Ronald McDonald House in Charlotte.  Ella is doing better, Amen.  She is her old self about half the time, while the other half she is irritable and in pain (as expected).  The good thing is that we've been able to wean her off narcotics and just manage her pain with motrin and tylenol.  She is a feisty lady during pin cleaning...takes 3 people to hold this strong girl down.  The first time I turned her pins was on Sunday and I felt like I needed a carafe of wine afterwards.  It seems so barbaric, especially when you hear the clicking noises of the screws turning under the skin.  And of course it just feels horrible inflicting pain on your child.  But, I've been reminded that with each turn of the pins we gain a bigger airway.  I have to keep reciting that in my head :).  Lucky for me this little girl is incredibly forgiving and she recovers quite easily afterwards.  This entire experience has Erik and I feeling absolutely blessed to have this child in our lives.  Seeing her through such a tough time and then watching her spirit come back has been truly uplifting.  She started to show her "Ella" self on Friday, wanting to be pushed around the hospital floor in a wagon, then ordering the nurses to dance and play peek-a-boo.  Saturday as we left the hospital her entire demeanor changed; she was so happy, like she was being freed and allowed to finally grace the outdoors.  Ella is loving the therapy dogs at the Ronald House, she asks for them every single night though they only come twice a week.  She keeps signing to us that she wants a big dog when we get home to NY...and believe me she won't forget.  Persistence is one quality she absorbed from her parents, maybe me :/.  Today we saw Dr. Matthews and other than her pin sites looking red he thought she looked good.  He wants us to increase the pin turning to twice a day and switch the ointment to calendula, just in case the bacitracin is irritating her skin.  We will be back to his office on Friday, when he will administer FSM (Frequency Specific Microcurrent).  FSM is suppose to help in decreasing inflammation and repairing cells.  Other positive news to report is that Ella is already smiling and offering up kisses to Erik and myself.  Those are great signs because it means Dr. Matthews was able to steer clear of her facial nerves.  She even put a spoon in her mouth last night, which is awesome because a few days earlier she was aversive to anything coming even close to her face.  Once again, Ella has shown us just how amazing of a being she truly is and how God continues to walk beside her.         

Love and thanksgiving,

Nina


P.S. For those coming to visit soon dress for warmth and bring your flip flops.  It already feels like summer here in Charlotte.  We thank you again for sacrificing your time to help Ella and our family.  

 Still not at her best, but at least venturing out of the hospital room.

Ella leaving the hospital incognito.  Her first attempt at cracking a smile.

 Ella with Mr. McDonald himself...

Already wanting to eat...she's half italian, what do you expect?   

Chipmunk Face

Ella bella is a little more alert and coherent today.  She continues to need morphine, but we are able to spread it out a bit more.  This morning I got her to play with finger puppets for a little and she seemed to enjoy face timing on the iPad with some friends and family, but as the day grew on she became increasingly unhappy.  As you can see in the pics, she definitely is getting more swollen by the hour --- that combined with the broken jaw certainly doesn't feel good :(.  Everybody keeps calling her a chipmunk, but I think she looks more like a mini sumo wrestler between the hair-do, the eyes, and the chubby face.  Well, she's still an adorable sumo wrestler to me.  

Today she went for a CT scan under anesthesia just to make sure distractor placement is correct and fortunately it is.  I asked them to clean her face and pins while she was sedated and thankfully they were able to.  It's been really difficult to clean her pin and trach sites while she's awake as she won't even let us near her face.  I'm hoping she gets better with this over time because at home in addition to her normal care, I'm going to have to clean the pins 3x/day and turn them too.  Eeek...I am not at all looking forward to that.  Erik has already volunteered me to be the official pin turner...isn't that nice of him?  Dr. Matthews thinks we will start the pin turning tomorrow.  He said we will start out slow with a half a turn working our way up to a full turn.  I've heard that the turning process is quite painful, so I'm just praying that she tolerates it because I certainly won't have morphine back at the Ronald House.  For those of you that know Ella, when she doesn't want something it ain't happening...unless of course an army holds her down.  But, you got to love that about her because it is her feisty personality that has gotten her this far.   

P.S.  To all the parents out there who have already gone through cranio surgery with their children, I give you so much credit.  Just as your children are warriors, you are too.  Though we've seen pictures, there is nothing that could have prepared Erik and I for this.  It is awful watching your child in pain and look so uncomfortable.  The only solace I have is knowing that this is the first step towards helping Ella someday eat and breathe on her own.  Two things that we all take for granted.

Love,

Nina  

Finally Clean!!!  Although it didn't last long. 

We are starting to take profile pics, that way we can see how much her jaw has grown by the end of the distraction.  

It's over...thank God

Ella's surgery was long and difficult, taking nearly 5 and a half hours today.  It was completely agonizing for Erik and I.  The surgeon said that since her opening is very tiny it made it all the more difficult placing the distractors.  We had a good surprise though...after breaking her jaw, he was able to get into her mouth with enough room to close her cleft palate.  We were extremely happy with this as it will make for one less surgery down the road.  He said some of her muscles were strong, some were weak, and one didn't move at all...so we'll just have to see what that means for swallowing in the future. 

What we are not so happy about is how much pain this little one is in.  She is on morphine and dilaudid around the clock, but is still very uncomfortable.  She keeps crying, wimpering, and signing to me she has an owie on her mouth and where the IV is placed.  Her face is swollen and the doctor said we can expect the swelling to increase until day 3, then it usually starts to come down.  It is breaking our hearts to see her in this much pain so I just ask you all to pray for her comfort and that this all becomes a distant memory to her.  Erik and I feel horrible though we know it was the best decision for her.  I just hope she forgives us :(.  She already is giving me these awful stares, but not to Erik of course...Daddies always get a pass from their little girls.  

Hoping and praying for a better tomorrow...

Thank you from the bottom of our hearts for all your love, prayers, and support. 

xoxo,

Nina