The man behind her journey.. King de MANDER!

Words can not begin to explain the man behind this journey, however, I am going to try!


Having not met God (face to face), we all have an image of how caring, compassionate, and loving he is to us. From the minute Emma was brought into the Emergency Room on March 27th, shes had her protector right by her side. A good doctor is always compassionate with his patients. But this doesn't even begin to explain the amount of love in Dr Mander's finger, let alone the love in his heart. I have watched him for almost a month. Doctors do not have days off- this we all know. But Dr Mander is a Pediatric Intensive Care Unit Specialist, he is every kind of pediatric doctor all wrapped up into one man and he has to be able to have all his knowledge at the tip of his fingers at any given second. We have seen him LITERALLY save children that you would have never thought when they arrived here they were ever going home. Of course to our surprise, many have come and gone. Emma bonded with him in the first few days. Every time he would come in and touch her she would pull grab his finger and make a sound that sounded just like she was saying "Uh Uh" . Whether you find it believable or not- Emma knows when that man walks on this unit because as he walks past the monitor at the nurses station she will always dip her sat's just enough for it to "beep' as he walks by.. She knows how to get his attention for sure. We (family & nurses) like to joke about Emma having a "Mander" day... these are the days when twenty minutes before her feeding is due she will scream until she gets it--she doesn't want to wait twenty minutes she wants it now! :) I'm sure you can figure out that Dr. Mander likes things done promptly (which as a parent is something I love!). :)

Dr. Mander is a pediatric genius (I can see him know reading this telling himself, "Genius, ya right.") There are times when I don't think he realizes how brilliant he is. Within the first hours of seeing what Emma was doing he was throwing out all these words that I had never heard before and as the test results poured in, sure enough, he was right on every thing that was going on. I would have to say the best thing about the way Dr. Mander handles these "intense" situations is almost everything is a race against time for him. He tries to find the "back door method" to everything. He will try and figure out the answer other ways.. Instead of waiting for blood results because sometimes, let's be honest-- in most of these situations in the PICU, seconds can seem like days when things are crucial. I could go on for hours praising this man, there is NOT a doctor on this planet like him! He is the best. Talking amongst other parents in the PICU over the last several weeks.. (You've all seen the TV show "House". right?!?)
Well, Dr. Mander is the "House" of Pediatrics!

Although, I know he lives for taking care of these kiddos, I don't know how I will ever repay him. He has taken so much pride in Emma and taking it day by day as frustrating as it has been. We have all excepted that Emma's genetic condition is so rare we do not know what the future holds! But we know who we will come to every time she needs taken care of. I will DEMAND to be taken to MANDER.

The only thing I can honestly say I dislike about Mander... :(
     -He's not a doctor Emma can come to for monthly check-ups. I wish that for the rest of her life he was in COMPLETE control of her medical care! ! This man is that AMAZING!
But as we all know, with Emma's Story he will be the hero behind her journey every time we tell it!

Unfortunately for every doctor Emma has I don't think I will ever care for them as much as I do Mander and Basnet! (They are an amazing team!)

Special thanks to the man behind the journey! I know you will never admit how AMAZING you are - but know that Emma is alive today because of the genius that you are! Thank you again for everything you have done and you will indeed be recognized every time I tell Emma's story!

*As parents, if you ever need your kiddos taken care of: St Johns PICU without a doubt.. There is a reason I say "Only God could PICU" these doctors and nurses are absolutely FANTASTIC! Not only are they great at what they do but I have became so attached to so many of them.
         They are our PICU family!

A month had passed.. Still in the PICU..

April 27 2012

The days of the week usually aren't a big deal to me, being a stay at home Mommy. . unless it's the work season for Daddy and then Friday, Saturday, and Sunday are very special days for us because those are the only days he is home. But when you think of days that stand out to you,.. birthdays, anniversaries, holidays, etc. The 27th wasn't a day to recall for me until March 27th 2012. This was the day that as you know, changed my life and the lives of everyone who knows my husband and our children. March 27th was the day Emma quit breathing at the Olive Garden. So as you see its been a month.

This month has seemed like 20 years! But we are improving and Emma should be going home soon! 

She will be having her G tube surgery on May 1, 2012 sometime in the morning. Dr Meier is her surgeon. He's great! ! Leona is who we will see for all herG tube needs in the future!

Her surgery went well and we will be discharged in a few days! Thursday May 3, 2012 is the goal!

praise God for his blessings!! :)

Pokes and scopes and scans, Oh My!

     ...So now it is time to disassemble the parts of the jigsaw puzzle or to piece another one together, for I find that, having come to one end of my story, my life is just beginning...

     Today was the day, the day we have been dreading, the day we have been looking forward to most.  The morning light brought nothing short of intense tears and heartache as we knew what had to be done, we knew the risks....

     {Insert back story}On Tuesday March 27th around 11a.m. Emma had stopped breathing as they arrived at the Olive Garden.  On Tuesday April 3rd Emma had an MRI scheduled, once sedated they were unable to vent her and she coded once again.  As we came into this week we had the care plan meeting which unfortunately wasn't as informative as originally planned due to circumstances like Emma developing pneumonia.  We did still achieve getting everyone on the same page, next plan of attack would be a bronchoscopy later in the week and then a retry on the MRI for the beginning of next week.  When they came back to us with a scheduled date for the bronchoscope of Tuesday, April 24th, this was a big fat no for us.  Even the doctors agreed let us just stay away from major events on Tuesdays for the time being.  So now it is set, they will take Emma to the OR and sedate her for the bronchoscope on Friday April 20th.  On to bigger and scarier news, lets throw in the MRI the same day as the scope.  Now, typically killing 2 birds with 1 stone is a great option, however in Emma's case we just worry the longer she is under and being worked on the more trauma/set backs that could possibly occur -however, with that said this IS Emma and I have faith she can rock this like no other!  {Back to our scheduled programming}

     The morning comes and goes, without fail!  Emma did amazing!  And get this we have answers!  We have been unable to get her off the oxygen since she came to the hospital but have not had solid answers as to why she is still needing it.  Today was finally that much needed relief, of an answer.  The scope showed that Emma has Bronchomalacia and Laryngomalacia.  Also Emma's Epiglottis is curved/floppy instead of flat.  On the left one lobe practically collapses when she breathes in, this is because of those conditions which basically mean soft/floppy cartilage.  So, the even better news, these are conditions she can/will grow out of!  As she grows up the cartilage will firm and continue to improve, so will her breathing without needing oxygen!  Well, this is the expected outcome of these findings.  Of course we understand that Emma is her own little lady, but regardless the outlook is very good!  The MRI shows that every piece of the brain that is suppose to be there, is there, nothing is nothing more, nothing less.  There does show a little bit of 'extra' open space of fluid between the brain and front/side of the skull.  This isn't necessarily a concern at this point, just something they will monitor for possible degeneration later on.  They will recheck her around 6-12 months.
     So here it is, we have made it through today.  We have much needed relief, followed by much unexpected exhaustion!  One tends to not realize how much the adrenaline of worry keeps you going until that final influx of answers come in.  Daddy just crashed out for about an hour nap, Mommy is running 100 miles an hour with all these positives and keeps bugging Aunt Sami with questions as we try to finalize our shirt design ideas... of which most of the replies given are a cross eyed look of confusion -like she really expects to get an answer out of this... she should know better! 
:Aunt Sami

Babies are angels that fly to the Earth, 

their wings disappear at the time of their birth, 

one look in their eyes and we're never the same. 

They're part of us now and that part has a name, 

that part is your heart and a bond that won't sever,

 our babies are angels, we love them forever.

    

God has blessed us with Answers.... :)

Nearly four weeks have passed and until yesterday we still had no idea what was causing  Emma's need for oxygen! You see, the power of prayer is the only answer. yesterday thousands and thousands of people all over the world prayed for Emma's safe recovery from surgery and answers. Taking a life threatening risk with her was something no one wanted to do but in order to help her start her road to recovery-- we have to know what we need to help her with? what her problems are? why these things are happening?............... Two of the biggest questions were answered yesterday-- Why does Emma require so much oxygen at times and then just that little spit of oxygen at other times?... It just didn't make any sense at all!

*So as the list continues... In a previous blog I posted about her hypoparathyroidism, hypocalcemia, HDR Syndrome, 10p13 terminal deletion, PHO (hole in heart which has no symptoms- will not cause problems).. Now we add more promising answers----

*Emma's EEG did show slow brain waves so we know she will have some cognitive delays, the extent of that , only time will tell.

*However, The MRI provided us with minimal fear and some piece of mind... She does have excessive fluid, more fluid than there should be, however, as far as "is everything structurally there where it needs to be?" The answer is YES!!!!!!!!!!! So she has the 'hardware' but yet again this is a thing that only time will tell and she will have repeat MRI's every 6 months.

*Tracheomalacia is a condition in which the walls of the windpipe, called the trachea, are blocked or collapse because of weak or soft tissue. This causes breathing problems.
Tracheomalacia is most common in infants. Most of the time it is a congenital defect, which means she was born with this condition and it has just gradually worsened since birth. Symptoms of tracheomalacia include coarse, noisy breathing (strider), prolonged exhaling, and a croupy cough. These symptoms become worse during exertion, such as from crying, or when the child has a cold or respiratory infection. Symptoms can make feeding difficult.

*Laryngomalacia is a softening of the tissues of the larynx (voice box) above the vocal cords. This softening causes the tissues to become floppy, and they may fall over the airway opening and partially blocking the airway.  Symptoms are usually present at birth but can easily be over looked. This is also something that in time should eventually strengthen itself and she should be able to strengthen the walls of her airway but the time she is around 20 months old things will hopefully be better for her. What this mean is? There is a long scary road ahead!

*Emma also has a "deformed" epiglottis. The epiglottis is the flap that covers the trachea during swallowing, so that food does not enter the lungs, The flap should appear flat to be working properly. Emma's epiglottis is floppy (weak) and curved.

__________________________________________________________________________
                                                Are you still with me???  :)
__________________________________________________________________________

Now, to best answer the question you are all asking?.. What does this mean for Miss Emma?

More than likely after a week of observing Emma will have to have a tracheotomy. Since her breathing condition is something she will grow out of in time. She will more than likely need assistance for her first few years. This is a precaution! With that she may also have a G tube put into her stomach instead of the NG tube just as precautions right now. "Better to be safe than sorry right?!"

This has not yet been decided but has been talked about with her intensivists, lung specialist and her pediatric ENT (who would do the surgeries).

Life is really looking in a more positive way for Emma! God is the only answer to all her miracles! Let us praise him daily!
_______________________________________________________________________

Resting so peacefully after today's procedures.  Welcome to our view from the PICU.  

Emma says: Om! .. Om! ... Om! ....

Emma has grown on all of the staff at the PICU. Om is one of the residents up at the PICU. He is an amazing addition to Team Emma! Emma throws a fight and says O! O! O! Every time he comes in to check on her!

One day I was asking Emma if she just wanted Om to get out of her room and with a room full of people as my witnesses, including the man himself.. Emma said "YA!" and when we all laughed Om said "Im going.." Emma then replied with a growl! I will never forget that ! It was hilarious! This little peanut has an attitude out of this world! I just love it!!!

I greatly appreciate everything Om has done for Emma. He is an amazing physician! He has a great future ahead of him!

Emma is always swinging her fists at Om and he honestly is the one that tries to give her a break anytime he can.

He always tells her "As long as you keep breathing we are going to get along great today!"

Thanks again for all you do for Emma ! You are all so extremely amazing at what you do!

Enjoy the pictures! :)

Yes, she was yelling at him.  It happens.

Blessed with Basnet

A huge essential to Emma's team, Dr Basnet (along with anyone else who is working on Emma's medical puzzle) never stops thinking about Emma and what else we can do to help her. I'm sure they take special pride in all of their patients because I have seen it. However, Emma has definitely got all of her medical staff on their tip toes because with Emma -- we just never know what is going to happen next. Our final words of almost every chat is usually "Well, we will wait and see what she does? What she thinks and how she handles it?" Pretty amazing this seven pound bundle of joy has an entire medical team that she is running in circles.

Dr Basnet has really grown on me! I love seeing her face in the mornings! I know Emma will behave for her .. at least until she has to tell me and Sarita how "great" Emma is being today! And I'm almost positive EVERY TIME she has said "see how well she is doing" ... Sarita has said something along the lines of "Remember it is Emma, she always acts up when you say those things" and truth be told Sarita calls it EVERY TIME! Emma will act up as soon as Dr Basnet leaves.

Emma is one smart little gal! She has figured out in her prolonged stay here that the PICU staff has grown pretty attached to her. Emma knows all she has to do is turn on those tears and stick out that pouty lip and Dr Basnet will take it easy on her that day. They are definitely buddies!

This woman is absolutely amazing and Emma would not be here today if we didn't have her on our team this is one thing I am absolutely positive of! When Emma coded during the MRI, I remember seeing her running in her heels and her peach colored dress stuck out in the sea of blue scrubs (Rapid Response Team). When I saw her running through there to get to Emma I knew she would do everything in her power to get Emma back up to the PICU and get her taken care of.

I will never be able to thank this woman enough and Emma will definitely be back for OUTPATIENT visits! So she doesn't think we need to come to the PICU on a regular basis to visit all her buddies. Emma has such a bright future and it is because of all the hard work her entire medical team has put into her case.

***Dr Basnet,  if you are reading this YOU ARE AMAZING and my entire family is so thankful for all you have done and all the time you have taken on Emma. Thank you soooooooooooooo much!!

{Insert pouty lip and tears here}

The Call That Changed It All....

On April 2nd shortly after 3 o'clock, the phone rang. It was a number I knew all to well. . that phone call we had been waiting two weeks for.. but all of the sudden, I wanted to set the phone down and act like if I didn't answer .. the results would go away.

However, in reality, I answered the phone. It was Dr. Balbort herself calling me with the genetic karyotype results. So, of course I knew everything was not fine like we were praying.

Just as we expected, Emma's karyotype showed a genetic abnormality. What exactly does this mean?! Is it fatal?! Can she be treated?! Fear rushed through every square inch of my body as I clenched Sami's hand as tight as I could. Sami was looking straight into my eyes telling me, "We can do this.." with the most terrified look in her eyes and I hadn't even told her what she was saying. The bond I have with Sami is so indescribable. She could tell by the look in my eyes-- our lives had changed forever.

Dr Balbort said the results stated that Emma has a deletion of her 10th chromosome somewhere in the 13th band. So her deletion is called a 10p13 terminal deletion. She tried to research it.. The information was minimal because this deletion was discovered in the early 1970's and Emma was the 34th person in the world to be diagnosed with this deletion. Therefore, the information is very limited and leaves a wide spectrum of possibilities for her ranging from a weaker immune system than most children to severe medical problems that could be fatal if left untreated.

This was an answer that led to many more questions.....

HOLY GENES!?........... Are you kiddin me?????

This is more of an informative post rather than a personal post. I'm going to give you all some general information on 10p13 terminal deletions. However, Emma may have very mild, severe, or HOPEFULLY very few of any of these health problems. This blog is about individuals with 10p deletions. Emma's medical conditions with each be explained in their own blog so that you can take the information in one at a time because TRUST ME... its A LOT to take in! My goal with this blog is hoping to help all of you better understand Emma's conditions, the problems she will face throughout her life, and most importantly what a blessing she is to everyone who has met her and will meet her in the future.
***************************************************
A chromosome 10p deletion means that part of one of the body's chromosomes has been lost or deleted. If the missing chromosome material contains important instructions for the body, learning difficulties, developmental delay and health problems may occur. How serious these problems are depends on how much of the chromosome has been lost and where the deletion is.

HDR Syndrome (Barakat Syndrome):
"H" stands for hypoparathyroidism. Embedded within the thyroid gland at the base of the front of the neck are four minute hypoparathyroid glands that release a hormone, PTH, whose function is to regulate calcium levels in the blood. When the GATA3 gene is missing or mutated, the glands may not develop completely or they may be missing altogether. This results in hypoparathyroidism and the main effect is an abnormally low level of calcium in the blood, known as hypocalcemia. (This is why Emma had the apnic episode at the Olive Garden. Emma's calcium level was 0.06 and regular levels are 8.0 and above!) Hypocalcemia is treatable through oral medication which Emma is on two different kinds at this time. She does has small calcium deposits in one of her kidneys, this is called nephrocalcinosis. Emma's hypoparathyroidism is being treated with special formula and several medications. They monitor her blood work on Mondays and Thursdays every week to make sure her levels are all staying where they should be.

"D" stands for deafness. Which Emma hasn't passed her hearing tests yet but we know she is hearing some by the way she reacts to things.

"R" stands for Renal. At this point Emma has a specialist out of St Louis who comes and sees her once a week and is NOT having or showing any signs of kidney OR heart abnormalities SO I'm not even going to worry you with describing this part of the Syndrome. Just Praise God when reading this part!! :) She will most likely have a weakened immune system due to developmental delays in the thymus gland. Since she is currently fighting pneumonia we are finding out how strong her immune system is and if she is going to be able to fight off infections on her own or is going to need a lot of assistance.

Emma has two chromosome 10's just like everyone else. However, on one of Emma's chromosome 10's she has a break in her p13 that is terminal which means from p13 to the end is broken. So, Emma is missing her 10p13, 10p14, and 10p15.   

This is a basic summary. My goal was to make it short because there is so much information. However, in a nut shell- this is Emma's genetic abnormalities.

If you have any questions you can leave a comment on this post and I will try to answer it. Emma also has her own genetic counselor who is a great help. Any questions you may have, ask away! I will get the answers. Hope this helps some of you better understand a 10p13 terminal deletion.

{So what you are saying is my genes don't fit right?!?!} 

Dear Diary... In bulk

Let's get this party started shall we?!  To catch things up to date I will be posting multiple updates from the wonderful world of facebook to here.  This will get the general coverage of the dates and events therein.  While this is definitely not going to be an all inclusive post covering all the ins and outs of our Miss Emma and her many battles, it will still be a timeline place to start.  I am sure that some posts will even be missed but there is no better way to "relive" these past few weeks then straight from the original updates.  

Rhonda McClure Fewkes

March 28

Baby Emma has made it through the night.  I just talked to Mickayla and I am on my way back up. Came home to rest last night but no luck there so I'll be getting the kids some clothes and going back up. Her calcium is still not up to where it needs to be but my little girl is resting now and no seizures last night so hopefully we will find something out today. For 6lbs she is a hell of a fighter and not giving up so we aren't either. Please pray for Emma she has been fighting for her life since she was in the womb and she is not giving up we need all the prayers we can get right now and hope she pulls through this. Thank you for all the calls and concerns it means a lot.

Mickayla Fewkes McGovern

March 29

Emma is breathing on her own!!! Continue praying!!!!! Love u all!

Mickayla Fewkes McGovern

March 29

Things are looking up but unfortunately she didn't do well when they weened her oxygen down so she is going to be on that for awhile. She is very congested this morning and we are waiting on test results hoping she isn't going to have to fight viral infection now on top of this all. Still not sure why or what caused her calcium to get so low. But now that she is stable they can take the time to figure that part out. We are also waiting on genetics testing results which could answer this all. KEEP PRAYING FOR EMMA!


Mickayla Fewkes McGovern

March 29

Opening them eyes and making her "uh uh" noises. Thank u for the prayers!

Rhonda McClure Fewkes

March 29

Kayla called and said she just poopied a lot!  So we know that part is working ok.  She has a calcium deposit on her brain and kidney from not having any and the body trying to store it in "safe" places but they did say she was in no danger now and will just be keeping an eye on it and treated if need be.

Rhonda McClure Fewkes

March 30

Emma is back on oxygen today, just had EKG done waiting on results. Calling in kidney specialists because she has calcium deposits on kidney. Might need blood transfusion tonight, we are just waiting hopefully she will not but they have assured us it will match her exactly cells and everything so it wont be to hard on her body. Just wanted to give an update please keep prayers coming she is needing them. Thanks will try to keep updates but our phones are off while we are on the floor with her.

Rhonda McClure Fewkes

March 31

Baby Emma had the blood transfusion and no difficulties, she is a fighter. She is almost 7lbs now, they weighed her tonight before I left. She is feeling better I think she looks very good and is content. Right now she is giving her Aunt Sami a rough time cause she is trying to take pictures of Emma and Emma must not have same idea so she is making her work for them. Kayla posted pic of Sami in chair at the end of Emma's bed so things must be getting pretty serious between them too tonight. We will see who gives up first! Keep prayers coming she needs them we have a long rough road ahead but she is a warrior I know she can handle it she has proved to us she can handle just about anything, she's Dubba Ds girl and she can handle anything that gets in her way.

Rhonda McClure Fewkes

March 31

Just talked to Mickayla and Emma is doing good she was crying very loudly which is great cause I could hear her over the phone that's awesome she has a real cry now and it's LOUD. Getting clothes dried cause Grandma screwed up n slept in so my day is starting out later than wanted. Speech Therapist is coming in again today to check her and see if she can have a bottle today again, giving small amounts 15ml yesterday by bottle slowly but surely she is getting better. Still waiting on Genetics Test. You would think that all the new technology that is out there we would not have to wait forever for test as important as these to take so long.This test will answer a lot for Miss Emma. She is a fighter, she has the heart and soul to live she has proved that. Mickayla and Kory are holding up pretty good the nurses and staff and doctors are so good up there to all of us and take very good care of my kids I am so thankful for this they are the best. When something like this happens you don't realize or even think how it changes your whole life and the way you look at things,and what we take for granted you look at things in a totally different way than ever before my little Emma has opened my eyes for sure at a lot of different things and seeing her laying there in that bed and her smiles and many faces and mad yells she does proves to me she is going to be ok. I raised my girls to be strong and take no shit off of anyone or anything that is thrown at them you come out the better person and be stronger for it and I think my little Emma has caught on she is such a quick learner. Miss Emma is a fighter and will overcome anything that is thrown at her she has 2 of the best parents a child could ever want or have and family. Please keep the prayers coming because they are doing miracles for her, God has a plan for Miss Emma we will have to wait and see what it is. Thank you for the calls and Prayers it means more than you know.

Mickayla Fewkes McGovern

March 31

Emma is doing good tonight! Gramma Dubba D is here and we are going to work on Baby CPR later. Emma was able to get her Central Line taken out today and they put an IV in her head for precaution. She shouldn't need it again but just in case they have one ready if they do need it. She loves her music box and she has been able to let both Gramma Jan and Dubba D hold her today along with mommy and daddy! Now she has a lot less cords and is much easier to hold. Her constant heart monitoring was discontinued so she doesn't have to have all those things all over her chest that keep coming off and the nurses have to keep unwrapping her and picking on her. Needless to say she is a lot happier that nurses are only in every few hours for vitals (she could do without the temp checks rectally) but shes got to have something to fuss about. Today another one of Gods gifts was in to visit us. (@Angela Manning Davidage) She was the nurse that drove us to the hospital from the Olive Garden after everything happened! ! I still cant thank her enough and feel like I have known her forever just from spending a few hours with her! Shes an amazing person! ♥ Thank you all for all your prayers. Emma is Gods miracle and he has changed a lot of peoples lives through her! Myself included of course! Monday is going to be a rough day for her because she will be having more testing done. we have a rough week ahead but hopefully the genetic results should be back end of this week too so we will have some answers there! Once again thank you all so much!!

Rhonda McClure Fewkes

April 1

Just got home little bit ago from hospital. MISS EMMA is moved out of PICU and in her own room on PEDS section. Think she is really liking her new bed, there is more sunshine in this room. They are going to start weening her off all the calcium because she is staying pretty level 8.9. Grandma is so proud and thankful its staying level still no answers to why this happened yet but getting closer. Doctors up there are amazing they are on the ball if any problem or concern arises so thankful for that. I spent the night with my Miss Emma and I will be the first to admit she showed me what staying up all night is about, trust me Grandma is to old for that shit. Kayla and Kory got a GOOD night sleep tho that's all that matters and we had fun some of the night when the screaming stopped, she just wasn't feeling very well so I held her close and we chilled in the recliner and when i would start to dose off I felt little fingers on my chin to wake up. Emma wasn't tired yet.I tried putting her to bed-didn't work she would just say "hey" and if I didn't hold her the crying would start. LONG night I swear the clocks there run so slow when it comes to her feeding time boy does she get MAD. Now I'm home going to wash mommy and daddy's clothes take hot bath and crawl in my bed and snooze til i get grace up for school then off to EMMA! OH! Has to stay on oxygen tried today again and we had to put it back on, so we will just keep trying. Keep her in your prayers she is a fighter and has proved this to us so we fight with her as well

Rhonda McClure Fewkes

April 2

Just got home from seeing Emma. Had to put heart monitor back on, still on oxygen and feeding tube, but she is drinking from a bottle today and loves it and is learning how to pace herself and breath while eating she is doing pretty good and I think she will catch on in no time they said she would. had alot of stuff done to her today hated seeing her go through that but we have to find out what is going on. Got genetics test back now the doctors can figure out how to treat her and teach us what we need to know to take care of her.Deletion of Chromosome 10 is what it showed I have no idea anything about this but will be learning.Lots of doctors and test are going to have to be done but now I hope they can have answers and get my little girl better.She slept all night last nite in her new bed so that was great. she was a more alert today and alot of gas was being relieved. Phosphorus is high so they are doing stuff to stabilize and balance everything out. She has a very long road ahead of her but we will make it as easy as we can for her, she has proved she can do amazing things for as little as she is and we are not giving up.going to bed in little bit so I can go back tomorrow and hold my Emma. Will try to keep everyone updated.

Rhonda McClure Fewkes

April 6

Today is a big blessing Miss Emma is now eating from a bottle and may get her feeding tube out tonight. YEAH!!!!! She is totally different from yesterday and last night.  Emma and I and nurse Pam had a VERY ROUGH night last night I held her for a few hours to calm her down she had a belly ache out of this world. She is calmer today put her in swing, dressed her and hopefully she will be okay for a few days or forever. Miss Emma and I are spending another nite together hopefully better than last nite. Grandma is still worn out from last nite.Kidney report came back fine.

Rhonda McClure Fewkes

April 8

So here is the update on my Little Miss Emma. Grandma went home last nite to get stuff done and come back up today ,and I said "be a good girl" NOT. Kayla told me she ripped her feeding tube out this morning . So she now has a new one in the other side of her nose, but at least she was polite and handed it to the nurse. SHE IS SO ORNERY!!! I made it back this morning and we had a Easter egg hunt for Maddie in the play area she loved it. Emma and Maddie both got Easter baskets from the hospital, so cool. Emma has alot of gas tonite and a belly ache she is not a happy camper but grandma bought her a real soft blanket and she loves it, so we are chilling in the recliner tonite to keep her calm with her comfy blanket and she is loving it. Doing pretty good today and nite try to keep everyone updated as much as I can. Thank you for the prayers, keep her in your thoughts and prayers please, she is still fighting and has a long road ahead.

Mickayla Fewkes McGovern

April 10 

Well it's Tuesday... In another hour it will be the 3 week mark of the Olive Garden episode. 1 week since the MRI code. But on a positive note: Emma is 8 weeks old!!!! And finally sleeping from being up all night again. She has the same nurse as last Tuesday she keeps telling Emma its Wednesday and don't try anything funny!

As you can see there have been many ups and downs, smiles and frowns.  There are still many details to be had, unfortunately mostly sad.  But our time with Emma is definitely not coming to a close, so we lift ourselves up taking the good with the bad, she will overcome each hurdle thrown at her as she has thus far.  Keep praying for Emma, just when we start to figure things out, she changes the game -and this is why we love her even more!  

:Sami

Only God Could PICU..

St Johns Pediatric Intensive Care Unit has been our home for 19 days now.. Emma is in the best of hands. You always hear how amazing the nurses and doctors are here and how they have saved so many lives. Those were always conversations that made me say 'Thats awesome that there is a place like that so close to home but I hope I never find out how great they are with kids because there is only one way to find that out.' I can't wait for the day we get to take Emma home but I know we will be frequent visitors to the PICU because these people are our second family! I don't even know where to start, Emma has a special place in everyones heart up here as well as at home. They are always asking "Is Maddie coming up today?" They get such a kick out of her crazy personality. She always has to tell me how she loves Amy because she has curly red hair just like her.. So that makes her AWESOME of course. Little does Miss Maddie know just how AWESOME Amy really is. She is one of those nurses who I can always go to for a laugh! Up here I need a laugh when I can get one in. (Thanks Amy!) Brooke is a nurse that I have bonded with BIG TIME! When Emma coded during her MRI, I couldn't even believe we were going through this again. Emma was doing so much better and there we were back to square one again. As I was sitting in the waiting room all I wanted was to see a familiar face and someone to tell me Emma was OK, someone to make me believe it and about that time the door came open and Brooke came and hugged me and told me she was crying and Dr Mander and Dr Basnet were with her. She walked with me and Kory back up to the PICU. I feel like I have known her forever.. Love you Brooke! I don't think I could have made it through those days without a nurse like you by Emma's side! (thank you Brooke!) Oh and then there's Danica.  :) . I love catching all her faces she makes when no one is looking. The brain freeze face from the lemon ice cream-- Hilarious! There's always people you meet for the first time and you feel like you have known them forever. Danica is one of those type of people for me. Its hard being away from all our family and friends but I seriously feel like I have known these girls forever! (Thanks for always making me smile and giving me something to laugh about Danica!) Jennifer loves travelling with Miss Emma. For those that don't know Jennifer was Emma's nurse the day she coded in the MRI and when the CT Scan day arrived she said I am not traveling with Emma! We both decided we were not re-living the MRI situation! I love Jennifer! She is always laughing at Kory and says he reminds her so much of her husband because he is so obnoxious. (Thanks for all you have done Jennifer! Love ya! ) Lynette is also an AMAZING nurse! She has a Mommy perspective on everything and I love it!! Emma has always blessed her with poopy explosions. Thanks for everything you do for Emma and for me! Thanks for letting me vent! Love ya girlie! Pam gives the best baths ever! She massages Emma into a deep sleep and its amazing!!!!! She says Emma is very near and dear to her heart! :) Thanks for taking such great care of Emma, Pam. Libby is so caring and always spoils Kory and I. She always comes running when Emma makes a peep. I love Libby to pieces! She is so passionate about her job and is always making sure Kory and I are taking breaks and time out of the room! (which is something that is really hard for Mommy to do.) Amanda, although we only had her once I will never forget what GREAT care she took of Emma. She's such a sweetheart. I never like seeing a new face take care of Emma because I like having the girls that already know her. So, I was nervous seeing a new face but would definitely LOVE for Emma to have Amanda again. Thanks for taking such great care and being such an active nurse! Greatly appreciated! Brenda - the thing I absolutely love about her is it doesn't matter if she is Emma's nurse or not if I need something really quick she will almost always come right away to help! Shes another one that is always taking care of Mommy and Daddy along with Emma. Thank you Brenda for all you do for us! Lauri- now that she's back from vacation I can express my LOVE for this NURSE! ;) She was our night nurse one of the first nights here and WE fell in love with her as a person and as a nurse! Emma also fell in love with her and caught on fairly quick to how much Lauri adored her and soon after started using that as her weapon! Lauri spoils her rotten! They have so much fun. Penny- Definitely the nurse I could NEVER EVER make it through this without! We have definitely bonded especially over our ornery Maddie's ! (She has a daughter named Maddie who seems to be my Maddie's long lost twin only a few years older!) Emma just loves aggravating Penny. Always keeping her on her toes! Words cannot express my feelings. Being passionate about the job is one thing but in my experience this gal goes above and beyond and I will never quit thanking God for crossing our paths no matter what the circumstances. Love ya Penny! Thank you for being you and being amazing !

 I honestly thank God every day for nurses like these girls! I could never imagine Emma coming as far as she has without these girls! There will never be a month pass by that we do not visit these girls just to thank them for life and all the in between! I know I will never be able to thank them enough for all they have done! The entire nursing staff here is great! Emma isn't just a patient to them. They treat her like one of their own! I love you all and please never forget how thankful I am! It takes absolutely amazing individuals to work up here and I am so blessed to have met all of you!

Olive Garden Angels

I just wanted to personally thank all of Emma's hero's that God placed at the Olive Garden on March 27th. All of this was an act of God he really does have a plan. Angi (one of the nurses) was not even going to leave the house that day because it was the 4 year anniversary of her fathers passing. The Olive Garden was the last place she was with him before he passed. In my eyes, as well as hers, we know God and her father put her there to help Emma. She will forever be a part of our lives. I love you Angi! There was also an Off-Duty NICU Nurse who's name is Jenny. She suctioned Emma out helped with recessitating as well. She came to see Emma in the PICU a few mornings after. Jeff (an off duty EMT) was also there and he said he should have already left. He was ready to go and something told him to have another bowl of soup. He said it was the weirdest thing because he wasnt hungry for more but something told him to get another bowl. So as he started on his second bowl, we were being seated at our table. Everything about this day at the Olive Garden was so ironic. There was also a female server from the Olive Garden who helped recessitate Emma. (Her name will not be mentioned because I haven't personally got to talk to her but I do know her name Thanks to a nurse here in the PICU who goes to church with her parents. God working his magic again!) There were several other medical experts there at the time and I want you all to know I appreciate everything you did to save Emma's life. Had we been at home instead of at hte Olive Garden amongst all of you-- she never would have made it. I can not thank you all enough! I do believe it was Station House 12 that responded to the Olive Garden! Those guys were AMAZING with EMMA! Angi I also want to say thank you so much for leaving your lunch and friends behind, dropping everything, just to personally drive us to the hospital. AND for staying to get me and my family through that first hour. It was also great to visit with you! I want all of your mailing addresses! You will all be receiving birthday invitations for many years to come! Emma has a lot to celebrate thank to all of you!  

Picture This.

:Sami

A Puzzle To Reckon With.

Hi everyone and welcome to Emma's Story, a blog about the trials and triumphs living with 10p13!

     I will start off with a few of the basics that I can and we will have Mommy (Mickayla) continue to fill in as we go.  I am "Aunt" Sami, a title I wear with much pride (the bulldog collar that came with the job is a nice accessory to the daily wardrobe).  We are very moved by how many lives Emma has touched in her 2 months of life, words can not express the gratitude felt towards those on our Team Emma!  Our hopes are that while we can keep everyone updated on Emma's status with this blog, she will continue to touch the lives of many around.

     Mickayla had Hyperemesis Gravidarum while pregnant, this is basically unrelenting, excessive pregnancy related nausea and/or vomiting that prevents adequate intake of food and fluids.  It was one day at a time for mom and baby, and that day finally came where one of the most trying pregnancies had finally come to an end.  But with the end of one chapter we all had to feel concern about what the next one would hold.  Emma Lee McGovern was born February 14, 2012, 4lb 7oz and 17.5 in. and healthy as could be!  We were all so relieved to finally have this perfect baby girl in our arms, and see Mommy eating again (yes there was a Dr Pepper in the waiting for this moment).  Feedings went well, breathing was normal and body temperature while somewhat changing maintained well with an extra blanket here and there.  We had the all clear, Mom and baby looked great and they were sent home just a couple short days later.  The next several weeks passed with small concerns, but nothing really too trying.  Emma's hearing would need tested again, while she did test 2 out of 4 she needs a 3 out of 4 to be considered passing.  The pediatrician expressed some concern with a few physical features and wanted to have genetic testing done, to err on the side of caution.  And aside from some acid reflux, who doesn't have that these days, everything looked great for Emma.  No one had any idea, the devastation that was upon us.

     On the day of March 27, 2012 Mickayla along with Emma and her Grandma Joy headed to Springfield for Mickayla's 6 week check up.  This would be the day that will forever change all of our lives.  Check up complete, and it was time to break the bank on those Olive Garden gift cards!  Once seated at Olive Garden Mickayla reached to get Emma from her car seat only to discover that she was blue, she had quit breathing.  Passing Emma off to her Great Grandma Joy telling her to do something, she's not breathing, Mickayla was facing any parents worst nightmare.  What events were to follow are nothing short of amazing.  At the Olive Garden was a handful (or so) of off duty medical professionals that were able to immediately start working on Emma.  What are the chances?!?!  Two things about that day tell me that there are angels surrounding this little girl!  For those who may not know, The McGoverns live outside of Rushville and their drive to Springfield is over an hour.  Springfield's St. Johns hospital has some of the most amazing children's doctors around our area.  Not only were they already in Springfield at the time of this episode, they were also surrounded by capable medical professionals!  They were all taken to St. Johns, a few episodes later and then finally stabilized, so begins the new journey of Emma!

:Sami

Emma 02.14.2012

Emma 04.12.2012