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

Surgery Tomorrow

We are down in Charlotte, North Carolina where Ella will be having craniofacial surgery Wednesday morning.  She will be admitted to Levine Children's Hospital at 5:30am tomorrow and she is scheduled to be in surgery from 6:45am to 10:30am.  This will be Ella's first jaw distraction surgery; it is the first step towards helping lengthen her jaw and open up her airway.  We are very nervous, yet we know she is in excellent care with Dr. Matthews and that God continues to have His hands on her.  If you have a moment we just ask that you say a prayer for our little Ella.  We are praying for the surgery to be successful, for there to be no complications, and for her pain to be controlled post-op.  Not sure how long we will be in the hospital, but definitely for several days.  Then we will be back at the Ronald McDonald house for 3-4 weeks during which we will have to turn the pins in her jaw. After that Ella will go back into the OR to get the arms of the distractor removed.  Many of you have asked for email updates so I thought it would be easier to just put updates on Ella's blog.  I will start doing that tomorrow, once she is stable.  

Thank you to all the people who have given us support and encouragement throughout these past few weeks.  Ella is so very blessed to have many real life angels around her.

Love,

Nina

A Prayer for Surgery
Heavenly Father, who created Ella in Your image and likeness. You know every fiber of her being and have willed that she be born. We ask You, Lord, to guide the minds and hands of those who will operate on her so that she may be restored to health and well-being. Help us, Lord, to pray with all our hearts and allow the burden of concern and anxiety to be lifted up with the knowledge that You are with her and her family now and always. And Lord, when she awakes from surgery, take her by Your hand and guide her through her recovery and towards a life of thanksgiving and peace. Amen

An Enormous Thank You

Friday night's fundraiser for Ella was a beautiful event.  Thank you to the Barefoot Peddler for donating some of their profits.  I never in a million years thought I would bring my baby into a bar, but hey there is a first for everything :).  

Thank you to my dear friends, Laura and Maureen, for hosting and organizing the fundraiser.  We will forever be grateful that you took the time and effort, out of the goodness of your hearts, to help our family and our little angel baby.  Thank you for this selfless act.  You are very special people who I am blessed to have as friends.

Thank you to all the people who came to support us that night and to all the people who were unable to attend, but still made a donation or sent in raffle prizes.  We cannot even begin to express our gratitude and the warmth we felt from family and friends, old and new.  The funds raised will provide some relief for the many medical expenses we have accrued since Ella's birth.

This year and a half has been extremely difficult for myself, Erik, and Ella and we still have a long road ahead of us.  And while this situation has brought some heartache, it has also allowed much beauty to surface.  It has given me new perspective on life and taught me never to take anything for granted.  It has brought out the kindness, compassion, and generosity of friends, family, and complete strangers (now friends).  The idea that people who don't even know us want to help during a trying time truly demonstrates that there is goodness in humanity.  Finally, it has brought me the most precious gift I have ever received - Ella, who despite all that she endures still maintains an amazing spirit.

Ella had an absolute blast at the fundraiser.  She was very happy, dancing around, and showing all her tricks.  I hope many of you got to see her new dance move, "the monkey"- a real crowd pleaser :).  It was almost as if she new it was a party just for her.  Ella feels the love from all the people around her and she certainly felt a lot of it that night.  I will be so happy to someday tell her about the many people who rallied around her, supported her, and prayed for her life.  

Thank you from the bottom of our hearts.  We continued to be moved and comforted by all the caring people who have touched our lives.  

Love always,

Nina

A Long Time Coming....

Dear Friends and Family,

 

I am writing on behalf of my mommy who is ashamed to be considered a total blog slacker.  Now I won’t sit here and make excuses for her.  But, seriously a lot has happened in the past 6 months.  I’m not gonna lie…though I know I’m the light of her life, I’m also nothing short of a handful.  Anyway, enough about her, let’s talk about me. 

 

I am doing awesome.  I turned one in August!!!  This was a huge milestone for me and my family, especially since the doctors were not too sure I would survive long after I was born.  Clearly God and I had other plans J.  Mommy always says she knew I wanted to be here since I started kicking like a maniac in her belly.   BTW, that has not changed much.  You should see my legs – they’re enormous, but in a good way.  Some might say thunder thighs; I prefer muscular and healthy.   Future soccer star…watch out.  So yes, though I go through a lot and get poked and prodded on a daily basis, I truly am a happy baby.  Someone once told mommy, “Ella doesn’t know she has a syndrome or think that she is medically fragile.”  And while that statement is quite obvious given I’m baby, if you met me you would quickly learn that it couldn’t be closer to the truth.   Someday I will figure out that I’m different than most people – that I don’t have ten fingers, or breathe through my nose, or eat through my mouth (I could go on and on here).  But, right now I am content just being me.  I know no different.  I smile, laugh, and love just like any other baby and want to be loved just like any other human being. 

 

On the developmental front, I am progressing quite nicely if I do say so myself.  I am doing things that mommy and daddy weren’t sure I would ever do.  I started commando crawling over the summer, then recently it turned into a 3 point crawl with a right leg scoot.  I am very creative (did I not mention strong willed???) and so I decided I should improvise when it comes to crawling as well.  My PT said she doesn’t care how I crawl so long as I get from point A to B.  My parents are huge motivators for getting me to move and so is the laptop.  I really love it when mommy plays elmo on youtube and then hides the laptop under a dishtowel for me to find.  That’s when I boogy.  I just started cruising around the couch and I am learning how to pull to stand (this is difficult for me since my forearms are underdeveloped, but don’t worry I will figure it out soon).  In the language department, I am able to sign “me”, “more”, “yes/no”, “hi/bye”, and “all done”.  I respond appropriately when mommy says, “touch your belly”, “stomp your feet”, “clap your hands”, “so big”, “hands up high”.  When she says “oh my goodness” I put my hands on my cheeks (very cute).  I am taking tastes of baby food by mouth, not for nutrition, but rather just to keep up oral stimulation.  I also started to open up my mouth a bit more and now I can even make purposeful noises past my trach.  I especially like to pull out new noises at bedtime (like I said I’m just like any other baby, I’ll try anything to delay going to sleep).  Some might say manipulative, I prefer smart. 

 

On the medical front, I’ve had a few bumps along the road.  Last Spring, I had a bad staph infection at my trach stoma site.  Trust me, “impressive” and “I’ve never seen this before” are two comments you don’t want to hear from a doctor…highly reassuring.  I was hospitalized at CHOP last June when going for a routine consult.  I had a nasty case of Rhinovirus, which is like the common cold, but when you’re dealing with a trached kid it doesn’t seem so common.  So far this Fall I’ve had another cold and then croup without being hospitalized (thank God).  In September I had major hand surgery to move my right index finger into an opposable thumb position.  I was in a full arm cast until I managed to remove it 4 days post-op.  This little stunt sent my mom and nurse in a frenzy down to CHOP’s ER in the middle of the night.  My parents were happy when I went into a hand splint (until of course I figured out how to remove this too…hourly).  Today I went to CHOP to see the surgeon for a post-op visit and he said my new thumb looks excellent.  It even started to move a little yesterday.  But, now the real work begins – I have to exercise my thumb daily and I go to outpatient hand therapy 2x/week (this added to my already busy schedule of 11 other therapy sessions per week plus Dr. visits).  I should be moving it more in the next two weeks and if all goes well I should be pinching with my new thumb 6 months from now.   Later this year, I will undergo the same surgery on my left hand.  As far as my jaw and cleft palate surgeries, mommy and daddy are taking me across country to meet with some of the top experts in their field.  It will be a difficult decision to make since many docs have differing opinions on what methods to use for the jaw distraction.  Because there aren’t many kids out there with Nager there isn’t much research on which is the most effective/least risky.  Most of their opinions are based on personal experience with patients.  I will likely have eye surgery this year as well.  My eyes tend to wander outward from time to time and so to fix this they have to weaken my outer muscle, which will force the inner muscle to get stronger.  Hopefully, they can combine at least two of these surgeries so that I won’t have to go under anesthesia so many times.

 

Mommy and daddy are hanging in here.  They are doing the best they can to take great care of me.   They are often sleep deprived and extremely busy - not only handling my medical care, but also dealing with issues involving insurance, Medicaid, medical supplies and equipment, nursing coverage, therapies, and doctors visits.  Some days are more chaotic than others and they are still trying to take it one day at time.  People say there is no book that teaches you how to be a good parent; well there is certainly no book on how to be a good special needs parent.  You got to go with the flow and just hope and pray to God that you are doing right by your child.  At the end of the day (or even at the beginning) my parents may be tired, stressed, and overwhelmed, but they say I am worth it all.  They tell me that I bring them more joy in life than anything they have ever experienced.  And hey – I feel pretty good about thatJ. 

 

Thank you everyone for your help this past year and especially for all your prayers and good wishes.  I know you can’t truly understand unless you are going through it yourself, but many of you through words and actions have shown us that you are trying to understand and that means the world to us.  Please continue to keep our miracle baby, Ella, in your prayers.  We ask for prayers that He continue to make her healthier and stronger in body, mind, and spirit each and every day.  Please pray for guidance for Erik and I that we make the best medical decisions for Ella, particularly concerning her upcoming surgeries.

 

I also want to thank my dear friends Laura Leonardi and Maureen Alchermes who out of the kindness of their hearts are hosting a fundraiser for Baby Ella.  This is a beautiful gift to Ella, Erik, and I and will help greatly with the medical expenses we’ve been accruing for Ella.  The fundraiser will be Friday, November 5^th from 5:30-9:30pm at the Barefoot Peddler in Greenvale.  For more info, you can email lleonardi3@yahoo.com or alchermesm@yahoo.com

Much love always,

Ella Rose

P.S. Apologies for poor grammar/spelling…I did write this at 3 in the morning while staying up as Ella’s night nurse.