Thursday, December 23, 2010

With a shattered heart...

I write to inform you all that Lucia peacefully went to be with her Heavenly Father last night.

Monday, December 20, 2010

I have been very reluctant to post any blogs - well first off, not much has changed in Lucia's condition.  Actually, let me take that back.  Lucia's condition changes so much within a day that it is so hard to write and tell you all she is doing well, because sometimes, the next minute she could be doing horribly.  But that has been the case for a while -- our "new normal" has become fluctuations from one extreme to the other, and it can take just seconds for the switch to happen.  Her resilience is amazing - she has become my hero (or my "heroine" in proper English).  She has hit rock bottom so often, and then just gracefully recuperates like nothing happened....truly an unbelievable wonder, which could only point to God.    

I have to say that we were blessed to happily celebrate her 5 month birthday, and Lucia did great all day long!  She was alert, wide-eyed and looking around, although she was kinda drowsy when we sang happy birthday to her (maybe she was trying to tell us something about our "great" voices :) ).   She has broken her fever finally, and we figured it was likely because the poor thing was dehydrated - also why she was losing all that weight.  We are trying to find the delicate balance of keeping her hydrated enough and yet, preventing the fluid from building up significantly in her lungs.

I wish I could tell you that today was a good day -- obviously when I set up a sentence like that, you know that it wasn't.  Lucia got very hysterical this morning and could not be comforted.  When the nurse came this afternoon, she determined that Lucia was under respiratory distress and said that Lulu was using everything that she had just to breathe.  Breaks my heart.  It is the worst thing in the world to watch your child suffer - and I think that the Lord would would His Mother.  The medication we gave to ease her distress seemed to have little effect, but now, many hours later, Lucia is peacefully sleeping right by her daddy...and still trying to swipe at her cannula and feeding tube...yep, that's right....IN HER SLEEP!  :)  Her eyes are totally closed and her heart rate has slowed down (so I *think* she's sleeping, unless this little girl is playing me for a fool!) and yet, her hands are busy waving at her face to reach her desired goal - which is to rip all that stuff off her face.  She is so determined and strong-willed.

Please continue to pray that the Lord have mercy on her.

Some pics from her 5 month birthday...
After bath time.

In her birthday outfit - SO glad I was able to capture that BEAUTIFUL smile.
The grub.  :)

  Family pic.

Monday, December 13, 2010

St. Lucia

As many of you already know, today the Church commemorates the young virgin martyr, St. Lucia of Syracuse (the patron saint of our little Lucia) who gave her life for Christ at the mere age of 20.  What is beautiful is that the whole Christian world (and I mean Orthodox, Catholic and some Protestants) reveres her, and many have beautiful traditions and festivities that go along with this feast day. 

I will be was hard to find it within us to celebrate, but we did.  It was hard and it is hard because the distress of Lucia's sickness has been overwhelming, and the wondering from one moment to the next of whether she will still be here causes so much anxiety and sadness.  Nevertheless, God's grace is abundant (as a dear friend reminded me yesterday in a phone message) and allowed us to pull ourselves together, put our "game faces" on, and celebrate a beautiful morning Liturgy in honour of St. Lucia, and our little saint Lucia.  (Forgive me, but as uncanonical and as unorthodox as this may be, I do think my daughter is a little saint).  Her dear teta (grandmother in Arabic) made St. Lucia buns and we munched on them after liturgy - a great way to celebrate the day (thank you Tante Sha-nay-nay!  ;)  ).  Though Lucia had a pretty high fever this morning and is dependent upon oxygen, we were able to get her to church comfortably (which thankfully is only 3 minutes away!) to receive the best medicine in the whole world.

Another little out-pouring of God's grace -- Lucia has been napping for over 3 hours as I write this.  It hurts me to tell you that this is the most sleep she has had in days, poor thing (you know, the saints didn't sleep much ;) ).  She continues to spike high fevers and lose weight and has also lost her cry again, but as the nurse put it today, she is neither getting any better nor any worse - she is stable in her sickness....for now.  Tomorrow, if God wills, we will celebrate her 5 month birthday.  Please keep the prayers up.  Our love and gratitude to you all.

A few pictures for you all to enjoy...

This might be a crazy mom thing, but she has the most beautiful hands (and truly, I'm not even the artsy type that has an appreciation for stuff like this)...but I LOVE her hands.  They do the funniest things sometimes.

Tuesday, December 7, 2010

How it is...

Lucia's health within any given day has been so variable from one moment to the next.  In a single day, she can go from being her perfectly calm, sweet self with great colour, excellent heart rate, a beautiful cry to a completely hysterical little baby with an unusual cry, very pale/bluish even, with a heart rate that goes through the roof, and a breathing rate that way exceeds normal.  It's the kind of roller coaster ride I don't wish upon anyone.  These past few days -- and really as I look back -- I would even go as far to say these past few months, have been like this.  Needless to say, we are exhausted and much more importantly, so is poor little Lulu.  In fact, she doesn't really sleep (this is a horrible thing considering that this is what babies are supposed to do for a good part of their day).  The most she will get is 2 hours at a time, and this is a blessing when it happens.  Also, she has lost so much weight because of all the work she is doing just to breathe.  Her lungs continue to fill up with fluid, and the nurse says she hears alot of wheezing.  The weight thing especially (among many other things) really breaks my heart because she was doing so well before this all happened.  Anybody that saw her that truly knew what T18 "looks like" woud tell me that Lucia looked GREAT...and I would beam with absolute pride (the good kind).

It is heart wrenching to watch her suffer and so we beg for Christ's mercy to take her suffering away.  Please continue to beg Him with us.

On a  final note, I know many of you have only seen pictures of Lucia, so I took a video of her yesterday morning when she was being her delightful self so that you, too, can experience the joy of our little sunshine.  (p.s. please don't mind my high-pitched, whiny baby may be annoying, but Lulu likes it  ;)  )

Thursday, December 2, 2010

We feel your prayers...

Just wanted to keep you all posted on Lucia's condition because I have a feeling that last blog sent hearts sinking...but also hearts praying....and as the title says, we have truly felt and experienced the power of your prayers, and we are so incredibly grateful.

Her cry is back, thank God, and honestly, Lucia seems to be acting like her real self again.  She is still swiping away at her feeding tube and that cannula, and in fact, today during a diaper change when I was not paying attention (of course), she pulled the feeding tube right out again.  What can I say - the girl's got talent!  To top this, you would think this would have made her happy, but maybe she knew she had done she cried her eyes out!  It was SO CUTE! 

Though her sweet cry is back, she has been very whiny most of the time and I can't seem to figure out if it is pain, discomfort, gas...the basic checklist.  I hope it's not pain.  Despite this, she does have moments of total quiet where her eyes just stare back and forth up high in amazement and it's never at any one particular object.  Maybe it's presumptuous of me, but I feel convinced she is seeing angels.  Finally, the nurse listened to her today and says that she sounds less congested, thank God.   She continues to cough very coarsely though, and the fluid in her lungs is very much present...and yet here she is...still fighting.  Thank you all again so much for the prayers -- please keep them up.

Tuesday, November 30, 2010

A visit from the nurse

It has been a few days since I last wrote, and it's because Lucia's condition really hasn't changed drastically.  Yesterday, we received a visit from a very kind and compassionate nurse (a faithful Christian woman too), and she kind of put things in perspective for us.  We were starting to become hopeful again since being home, but the nurse confirmed in the most loving way possible that it's not looking very good for Lulu. 

Her health is deteriorating.  There is a very bleak flow of oxygen in her lungs and they are continually filling up with fluid (despite medication to counter this),  she is still feverish (a sign of her trying to fight the infection -- she really is a fighter), her heart rate is slowing down (probably getting very tired of all that hard work), she has lost quite a bit of weight and she isn't sleeping very well (the lack of sleep probably has to do with being unable to breathe deeply for very long).  She has been coughing as though she's been smoking cigarettes since birth -- really, it's shocking what kind of a cough comes out of her.  Her sweet cry is back, but is weaker than ever.  It still makes me smile because of its sweetness, but my heart aches at the same time.   She is somewhat herself at times - still swiping at that feeding tube and now the cannula.  Yesterday, she made my day when I tried to tickle her and she gave me a smile.  Most times though, she seems so beaten up by this illness.

The nurse put it beautifully yesterday...there are one of two miracles that can happen.  The first is a total healing miracle..probably the magnitude of Christ-raising-Lazarus-from-the-dead type of miracle.  The second kind of miracle is the one where Lucia goes to be with Jesus in Heaven.  I don't know how to describe the pain of even writing that out.  We know in our minds that this is what we all strive for...but our hearts have to experience the pain of death before getting to that perfect place, where "all sickness and sorrow have fled away."  We pray for a miracle, but only God knows which one we will receive.  Lord have mercy.

Friday, November 26, 2010

I cannot tell you how many times in the past 2 days that we have thought Lucia was going to call it quits for life on earth....I think that's the nicest way I could possibly put that -- there is nothing nice about it though.  These past 2 days have been draining in every way.  Once we left the hospital, we thought she was being herself, but that night/early morning, it seemed that she took a turn for the worst.  Her oxygen levels dropped dramatically (and honestly, I think this has done some serious damage to her brain), she stopped crying altogether (for you parents out there that may think crying is torture, please do me a favour and thank God every time your child is SUCH a blessing), her heart rate sky-rocketed to the 190-210's  (unusually high -- and probably prevented her from sleeping) and she spiked a fever that seemed to be stubborn and unaided by tylenol.  These symptoms continued for over 24 hours straight.  As of right now (very early Saturday morning), we are giving her oxygen through a machine which is keeping her levels up, her heart rate is in the 180's (still too high), she has given us a few very weak cries (they sound like tiny protests and are absolute music to my ears), and she still has a fever, but not as high as before.  She has not slept a good few hours since Wednesday (neither napping or night-time sleeping).  As the one that knows her best, I just feel like she's not the Lucia I know.  Lulu is typically alot more interactive - she hears my voice and looks in my direction, she makes alot more noise than she is currently making, she responds to sounds, she is able to track things with her eyes.  Maybe it's because she is sick, but I feel like she has lost some of these abilities..and it breaks my heart to pieces.  Though there has been very slight improvement today, we still feel that we are playing a waiting game.  When is "it" going to happen?

It really may not happen this time.  Part of me is convinced that she really wants to live and is cleaving on.  Maybe she will get through this.  At this point, I truly do not know what would better for her (and selfishly for us) - leaving this world or staying.  I write with deep tears, and I ask for your most fervent prayers for the Lord's mercy.  Thank you with all my heart.

Wednesday, November 24, 2010

We are going home!

As evidenced by the title of this blog, yes, it's true - we are going home.  :)  There is both good and bad to this reality.  The wonderful thing is that we get to be in the comfort of our own home and provide Lucia the best possible care we can there.  Also a great thing is that Lulu has shown some improvement in the past 24 hours - you can tell just by the way she has been interacting with us.  She is much more alert and aware of her surroundings...and she's doing one of my favourite things -- crying when I put her down after carrying her for a while.  Is that cruel?  :)  I just LOVE that she wants me to carry her  (I mean, I don't always love it --  I do have things to do sometimes -- but I LOVE it - she KNOWS ME!).  The flip side of this is that she is still sick.  Her left lung is still collapsed.  Because of the hole in her heart, congestion and fluid-up on her lungs will always be an issue.  Since we have chosen a less invasive way to treat her medically, there is very little to be done, except your prayers -- and they are working by the way. 

As I previously said, it is a miracle that she is still alive -- and I really realized how big of a miracle today.  Doctors have been preparing us for the worst since Monday, and it is because her oxygen levels have been so low.  They fall into the 40s and 50s frequently (remember that normal is 90-100).  She always seems to wiggle her way out of these low oxygen spells, but more often than not, she is living on a very low oxygen supply - and probably has been doing so since birth, where she was turning blue on a frequent basis.  This is probably medically inexplicable.  Through God's grace, your prayers and her strength, she is living and bringing joy and lessons to many people.

Before we get ready to head out, I want to ask for another prayer.  Another T18 baby is in the hospital.  Her name is Trishtan and she is 7 months old and is experiencing alarmingly similar issues to Lucia.  Please pray for the health of this beautiful and precious little girl.

Tuesday, November 23, 2010

She hung on

Last night probably goes down on my list of the top 3 worst nights of my life.  It started off with me feeling weak and not being able to keep anything down in my stomach.  As much as it pained me to leave the hospital, I retreated to my in-laws for some "rest" -- I could not sleep a wink.   At about 11pm, I called my husband and he told me that Lucia's heart rate had now dropped significantly to the 110's, and so had her oxygen levels.  They put a breathing mask on her to increase her oxygen intake.  No matter my condition, I decided it was best for me to be there...this could've been we made our way back to the hospital.

At this point, the x-ray had shown that her left lung collapsed.  They said that this is not irreversible (in other words, it could get back to normal), but with her heart condition, it was not likely.  Today, they confirmed that what looked like a collapsed lung on the x-ray was probably a combo of an infection, a collapsed lung, and fluid build-up in the lungs.  Also, with the lack of oxygen getting to her whole body and her brain, the doctor mentioned that she probably had brain damage.  The doctor gave us the talk that they have to give to families where death could be imminent.  How far did we want to go to keep Lucia alive if her heart stopped or she stopped breathing?  This is no easy decision for any family - and it is awful that it even has to be a decision -- who are we to play God with all this medical equipment?  There is no right or wrong answer.  We decided that giving medication and CPR were the furthest that they could go if they had to.  An escalated treatment that they could provide is called "intubation," where they put a breathing tube down her throat and connect that tube to a ventilator, which would give Lucia the oxygen and air that she needed.  As her parents, we decided that this would not be the best thing for her, even though it would keep her alive.  We feel at peace with the decision, and I think that peace is God's way of telling us that we did OK. 

The moment of deepest grief came when we decided to take the mask off of her.  There was no telling what would happen next.  We did that and Lucia actually seemed to do better with everything off of her face!  I know I've said it before, but our girl is SO STRONG.  We are so grateful to God that she is still here.  Doctors are not too hopeful for Lucia, and honestly, we don't know what to think or expect.  We are taking it one moment at a time, and pray that the Lord's will be done, and that whatever happens, we may accept it with His grace.  I know that sounds negative, but we will need His grace whether she lives or not.

We thank you all for your love and prayers, and we know that God is working miracles.  The fact that she is still here is truly a miracle.

Monday, November 22, 2010

Quick update

It is Monday and we are still in the hospital.  Lucia had a great day yesterday, but today her heart is racing.  Most kids have a heart rate of 120-130.  An acceptable heart rate for Lulu is from 140-160, a very fast heart rate for her is 160-180.  Hers has been 200-210 for a few hours now.  Doctors are very concerned with how hard it is working, especially with the large hole in it.  Also, because of the high heart rate, it is causing her to spike a fever. 

We were hoping to get out of PICU today, at least to make it onto "the floor", where she would be less monitored..and that would pave our way home...but I think that may have been wishful.

Lord have mercy, Lord have mercy, Lord have mercy.

Saturday, November 20, 2010

A rough patch...

Hey everyone,

Would like to ask for your prayers (and if I could be so bold, a little extra hard please).  Let me first start off by prefacing all of this by saying that when Lucia gets sick, it's a scary thing.  In the back of our minds, we are always thinking the worst, and so naturally we are very careful to make sure not to expose her to any germs -- but sometimes (actually many times) these things are just out of our control...this time is one of those times.

Lucia had been congested since the beginning of this week, and by Wednesday (after a really restless night..."restless" is being very kind - this little girl did not sleep for a single hour straight that night -- the most she got all night was half an hour), she was so badly congested that her cry became pretty weak. We finally took her in to see our pediatrician on Thursday and after an xray, he was concerned that it might be pneumonia.  He had us check-in to the ER at Texas Children's Hospital.   We have been here since.  Lucia has had a few ups and downs here .  In the ER, her oxygen saturation levels (termed "sats") dropped to a 7 (in most people, they are 90-100) - this sounded off HUGE alarms to the doctors and nurses. 

We were moved to the PICU, where they've been doing all kinds of tests to figure out what's wrong.  They don't think it's pneumonia, but suspect it's a viral infection.  She is still quite congested and they have been suctioning her out using a special mechanism.  Right now, she is also running a fever.  Also, her heart (because of the nature of the hole in it) is not getting blood to all the right parts, so they have her on a med for that.  To keep her O2 levels at an acceptable rate, she has been receiving better air flow with some oxygen through what's called a cannula (a tube with two prongs on it that go into her nostrils).   On a very cute note though, she took her pacifier today with her Auntie Maji for almost an hour straight for the FIRST TIME EVER.  Her feeding therapist would be so proud that she went to town on that thing!  She was smackin' on it like little Maggie Simpson.

All of this blog to say that we NEED your prayers for our little Lulu, that the Lord would show mercy, compassion and healing on her and on us.  We want to go home with her soon, and pray that she starts to show these doctors her strength...well, God's strength...but honestly, she really is SO STRONG.  :)   Thank you all so much.

Monday, November 15, 2010

She turned 4 months old on Sunday...

This past Sunday, we were blessed to celebrate Lucia's 4 month birthday.  As crazy as it may sound to celebrate each month's birthday (part of me wondered what the baker thought when he was writing out "4 month" on the cake -- probably that I was some obsessive pyscho mom...which actually may be true  :) ), I was inspired to do this when I watched this incredible video of a little boy named Eliot, born with trisomy 18, and lived to be 99 days old.  His parents celebrated every month of his life with a birthday party.  His story is called 99 balloons - and if you feel like crying your eyes out, please tune in and watch.  :)  Actually, please don't mind my sarcasm, it is quite a beautiful story, and as I previously said, a GREAT inspiration to me.

So Lucia decided to initiate her birthday festivities on Sunday by pulling out her feeding tube right before church, as she was finishing up a feeding.  I told you all that she is strong-willed.  :)   So, I just decided to let her be free from all those bandages on her face for a few hours.  She is so sick of those darn things and that feeding tube, that she's always swiping at her face to pull it out.  This is both good and bad -- bad because it's a challenge to put it back in and she hates when we do this, and good because, as her dietician put it: "I applaud her fine motor skills."  I am actually proud of her that she can do this.  :)  She knows what's bothering her and makes sure she does something about it --- that's my girl!

We had a wonderful Thanksgiving luncheon this past Sunday after Liturgy, and that was kind of Lulu's birthday party.  The beautiful choir at St. Anthony's and all the parishioners in attendance sang "God grant you many years" to Lucia.  I hardly made it through the hymn, because I don't think those words have ever meant so much to me.  Thank you dear St. A's family for loving Lulu and for praying for her - please keep the prayers coming.

And speaking of prayers, just a few specific requests if you all wouldn't mind.  Tuesday (which is technically today as I write this) we have various doctors' appointments for Lucia.  One is an evaluation with a GI surgeon so that we could seriously look into doing away with her feeding tube and rather putting a G-button on Lucia's stomach.  If we go the G-button route, this would require surgery and they would have to sedate Lucia.  Ultimately, the G-button is a MUCH better solution than the feeding tube, but with her heart condition, they may not go ahead with the sedation and surgery.  The other appointment we have is with a different cardiologist than the one we were previously seeing (yes, the one I called a jerk-face :P ) .  We hope and pray that this new doctor will work with us for Lucia's best interest, and we are also hoping that he's got some good bedside manner, unlike the previous one.  Thank you so much for the prayers -- we are truly humbled by them and are SO grateful. 

Lulu with mommy and daddy at the luncheon after church on Sunday.  If you don't see her neck, it's because I'm still trying to find it under all those chins.  :)  I LOVE YOU LUCIA!!!

Wednesday, November 10, 2010

In honor/honour of Lucia...

I had to include the Canadian spelling of "honor" in the title of this blog, so Lulu doesn't forget her roots!  :)  I'm writing today's blog to thank some wonderful friends that have decided to honour (sorry, will always be a Canadian at heart - you can take the girl out of Canada, but you WILL NOT take Canada out of the girl  ;)  ) Lucia in a very special way. 

Often, I get so caught up in my own little bubble that I tend to forget that she might be having an impact on peoples' lives that I just can't see.  One such group that has been impacted are the teens of St. George Cathedral in Wichita, Kansas - where, for those that don't know, my husband was former youth director, and I was kind of his side-kick.  These amazing teens, led by their president Grace Farha, decided to have wristbands made in honour of Lucia.  The wristbands read "Every good and perfect gift is from above   Lucia."   We were and are so incredibly touched by this act of love -- it really brought tears to our eyes when we first learned about it.  The teens are selling these wristbands, and profits will be donated to our church, St. Anthony's, for the purchase of a St. Lucia icon.  From the bottom of our hearts, thank you St. George teens!  We love you and miss you terribly!!!

  My former co-workers at Hinkle-Elkouri law firm in Wichita, sporting their Lucia bracelets.

We are also incredibly grateful to and touched by Miss Rawan Ashrawi, a teen from our church, who decided to research the awareness ribbon for Trisomy 18.  After finding out that it is light blue, Rawan went out and purchased light blue ribbon and made awareness ribbons.  She brought them to church this past Sunday, and I will be more than happy to give one to whoever would like one.  Thank you so much Rawan -- your kindness and love mean more than you know. 

I never realized it like I do now, but it is so important to raise awareness about disease and illness.  I think awareness lessens our ignorance and initiates the first steps for us to embrace and love people better.  It also helps, in our case, to advocate to the medical community that Trisomy 18 kids are out there and they need to be treated with the same degree of care and integrity as all other patients.   I say this because MANY doctors have never even seen a Trisomy 18 child, and when some encounter a baby like Lucia for instance, they might have no clue what to do.  They are thrown off, because according to the stats, they're "not supposed to be living."  We have had a few experiences where that has been the case, but more often than not, we've been blessed with excellent medical attention...besides we do live in close proximity to one of the world's greatest medical centres - thank you God.  :)

Rawan, Lucia and I sporting our beautifully madeTrisomy 18 awareness ribbons.

Monday, November 8, 2010

Pains and Hopes

As I mentioned in a previous blog, we began "meeting" other T-18 families over the phone.  One mother coined the term "a new normal" and it really made alot of sense to me.  Things that are typically not normal for other families have become exactly that for us - normal.  Some of these things include: switching out Lucia's feeding tube (which she hates!!!), taking a feeding syringe everywhere we go, using a feeding pump at home and cleaning it out after every feeding (SUCH a pain in the butt sometimes), weekly doctors' appointments, various medical episodes that she's had -- I'm sure there are things that I'm forgetting or things that I may not even realize aren't normal.  Part of that is a blessing because we have no other children to compare to, and therefore we don't know what a "normal" child does. [sidenote:  I don't really like to use the word "normal" to talk about other kids, as if somehow Lucia is not just sounds so harsh.  I mean I realize she has severe health issues, but I like to use the word "typical" to differentiate -- thanks to fellow T-18 mom Michelle for helping me realize that yes, my daughter is normal, just not typical.  Might seem like a play on words...but I guess I've become more sensitive to these things ever since Lucia was born.]

The minute I am tempted to compare Lucia to other perfectly healthy children (often this happens when I am frustrated about something medical or when I am confronted with her developmental delays), I *try* to stop myself and recognize exactly what a friend of ours did when Lucia was born.  He called Lucia "our bundle of salvation."  In other words, this little girl is our ticket to heaven....She was created JUST FOR US, so that through our struggles and joys with her, we would be purified of ours sins and learn to LOVE more completely and wholly as God loves.  She's helping us get to heaven.  As perfect a plan as this sounds, (and I'm sure it is in God's eyes), it is really hard - make no mistake about it.   Actually, hard is such an understatement....gosh I'm trying to think of a really good word that's way worse than "hard", but the English language is failing me.  It is hard, but heaven shouldn't be an easy place to get to.  Forgive me for getting all preachy (but in a way, by writing things out I preach to myself too -- and sometimes am surprised by what I know, but need to be reminded of), but Christ had to first go through the agony and pain of  the cross before the glory and beauty of His Resurrection.  Each one of us has their cross -- ours is Lulu's illness, but not Lulu herself.  She is our beauty queen, our angel and we are in love with her! 

Just to give you all a glimpse of some of our pains..only because I would really like you to pray for these things specifically (not to feel sorry for us -- please!), here are some things we are currently contending with.  Well, first off, as I mentioned Trisomy 18 is a lethal condition in and of itself....many babies don't make it past their first year.  While many people have told me, and I have even said to others, "everyday with her is a blessing" (and it truly is - I'm not denying that)... few parents actually live with the reality and the horrible thought that each day might be their child's last here on earth.  It pains me just to read that line over.  Second, Lucia's heart works really hard because of a really big hole in it, and various anomolies in each valve.   Our first cardiologist that we saw told us that "it sucks to be us"  ...which wasn't exactly helpful nor kind - that jerk-face.  Obviously since then we have wanted to change doctors but are having a hard time with that since all of the pediatric cardiologists at Texas Childrens' Hospital work on the same team (yep, all 48 of them).  Lucia is also currently suffering from severe acid reflux.  She gags frequently and is typically irritable when she eats. My poor little baby also has one eye (her left) that opens alot less than the other one.  A few doctors and our dear occupational therapist have warned that if she doesn't use it enough, she'll lose it.

All of these health issues are typical for T-18 babies.  We also learned by talking to parents and reading online that seizures are common, as are hearing and vision loss...though we are still trying to determine if she really has experienced these.  What seems to hurt alot too is to know from other parents of T-18 children that are still alive, is that Lucia may never walk or talk....though let me tell you, that her and I have conversations all the time!  Honestly, she really does answer back when I say things to her...respectfully of course.   ;)   

Despite all of these medical issues (and forgive me if I've overwhelmed you-- for me, I'm almost numb to the medical jargon), we do have hope.  We believe in a God of miracles, the Physician of our souls AND bodies.  We don't know if He will heal Lucia or not, but we pray for it....always careful to conclude our prayers with "according to your will."  ...but please could ya?   :)  I ask you all to join me in lifting up these prayers to God for Lucia's healing....well, kinda silly to ask, because I know many of you are praying for her anyway...and I am so grateful for your love and prayers...really, you don't know how much! 

On a hopeful and happy note, we coincidentally ran into a T-18 family at the hospital last week, who happened to have an appointment in the same clinic and around the same time as we did (amazing how these things happen).  Their beautiful daughter, a 5 year old, has Trisomy 18, and her mother took one good look at Lucia and told me that my little angel "LOOKED REALLY GOOD."  Always a wonderful thing to hear -- especially from one who really knows.  Also, Lucia is getting chubby!  (for her size of course)..she currently has multiple chins and has started to accumulate some rolls...making diaper changes a little more challenging these days...and I LOVE it!  :) 

Also, on a very positive note, Lulu has a team of people (besides all those that already love her) that are working with her to make her strong and improve her quality of life.  They include an occupational therapist (we love you Tina!), a speech therapist for feeding, a dietician, and most recently, a vision teacher.  Thanks be to God for all these wonderful services and how they have all come into our life. 

Ok, this entry has been quite long and informative, and honestly, I am WAY ready for bed.  Thanks to all for reading again.  With much love -- Ramia

Wednesday, November 3, 2010

A little bit'a history...

I mentioned in the first blog that this one would be about the pregnancy.  Well, let me backtrack just a little bit further than that.  My husband and I have been married for over 2 years now, and I have to say that these past 12 months have brought us a whirlwind of change, including my husband's ordination to the diaconate and then priesthood, a move to a new city and church community, and of course, being pregnant with Lucia.  Around the same time that we found out she was a girl (I think around the 5 month mark) we also started to discover some pretty shattering things about the baby growing inside....she had cysts on her brain (which they say could be indicative of a chromosomal abnormality), her heart shape was abnormal, her fists were clenched (although I still beg to differ on this fact, she frequently had her index finger pointing and this still shows in ultrasound pictures that we've kept) - these were only some of "soft signs" of chromosomal abnormality.  We opted not to have an amnio done to uncover whether this was going to be the case or not - we were going to have this baby either way.  Looking back, I'm so glad that we opted not to have the amnio...I think it would have been traumatic.  So, as you can tell, the pregnancy was emotional, stressful, worrisome (just to bust out some of my adjectives...there goes that great English student in me).  In fact, so worrisome that I think I've passed that trait to Lucia.....she even has this vertical crease in her brow that looks like she's perplexed and worried anytime she scrunches her little face.  [kind of a sidenote:  I recently read an article in Time magazine about how a woman's condition during her pregnancy shapes and affects the baby's for the rest of his/her life!]

So that was the pregnancy.  Lucia was born a full term baby at 5 lbs and 8oz. (quite tiny!), and we spent 2 weeks at the hospital, most of time with her being in the NICU.  As I've previously written, that's when we were given the T-18 diagnosis -- moments that I still don't like to recall (probably never will).  Not only this, Lucia had complex heart disease as well as feeding diffuculties that required a feeding tube to be placed through her nose.  We baptized her (well, not me husband did that ;)  ) in a little room offered to us by the hospital, and Lulu was surrounded by people that love her --her older cousins, her aunts, uncles, grandparents and her very special godparents, Fr. James and Gigi Shadid....I'm such a name-dropper  ;)  . 

Doctors gave us very little hope in terms of her survival -- in fact, the genetics doctor told us she had only weeks to live.  We were sent home with hospice care to basically wait for our child to go to heaven.  We believed every word they said (because, honestly, that's how we are all brought up -- to take every word from a doctor as fact) and had no the midst of tragedy, we seemed to forget that the doctors were not God, and that Lucia's life was ultimately in His hands.

A month and a half after she was born, we were surfing the net and came across some families that had children with Trisomy 18 -- our burning question to each family was, "how long did he/she live?"  ...probably insensitive at the time.  We were *shocked*, to say the least, when we discovered that some of these children were STILL living well into their teenaged years.  Talk about a blow in the face -- here we are sitting around for a morbid event to take place, when it could be months, even years.  Time had taken a stand still for me...I mean, I never wanted Lucia to leave my sight, not for a second.  Every morning I would wake up and jump up to make sure she was still breathing.  Actually, in the back of my mind, that fear is always there...and I don't think it will ever leave.   

She is almost 4 months old now, and as I've told some, truly a fighter.  Maybe it sounds crazy to describe personality traits of a little baby...but I'm her mom and I know her.  Lucia is sweet but strong, she is sensitive and will let you know if you upset her...though sometimes she's a faker...but it's still so cute.  She loves affection and knows that her mommy and daddy will drop anything for her....although I think we're learning to be a bit more strong-willed and realize that we are the parents here!  :)  ...gotta start early, right?  :) 
Lucia on the day of her birth, and that ridiculous Aunt Jemima looking was cute though. :)

On her 1st month Birthday, with her NG feeding tube in place.  Isn't she a beauty?

At 2 months, she graduated into a car seat (she was previously in a car bed, if you've ever heard of that).  There are days though when she still has alot of difficulty in the car seat, not in this picture of course -- here she is peacefully sleeping. 

Our little pumpkin

Finally, just a note to say thank you so much for all your emails and comments...I wish I had the time to personally respond to each one.  Know that your kindness is deeply felt, and so are your prayers!

Monday, November 1, 2010

I'm starting this blog..

Though I'm not sure who will or will not ever read this blog, the other day I felt "inspired," I guess you could say, to start a blog about Lucia and our journey with her.  It has been quite a journey so far, and for those that know very little about our Lulu, she is a sweet little (seriously, she's petite for her age - she likes to watch her figure ;) ) baby girl that was diagnosed with Trisomy 18 just 24 hours after she was born back in July.  Trisomy 18 is a pretty rare genetic condition where an extra piece of genetic material is found on the 18th chromosome.  It's not hereditary, but just one of those things that happens "randomly."  I say that because I don't really believe it's coincidence, but that the Lord chose us for her.  If you read anything about it (it's also called Edward's Syndrome), it will tell you that most children with this diagnosis don't make it to birth and the ones that do, very very rarely make it past their first year.  So Lucia is a little miracle -- maybe a BIG miracle actually, since I think all children are miracles.  Though we've had a few rough patches these past several weeks, she really has been doing incredibly well through the prayers of MANY friends, family, acquaintances, even strangers.

Back to the whole idea of this blog.  It almost goes against my nature since I am a pretty private person, but I have a few good reasons as to why I should.  The first is to keep everyone informed about how we are all doing, most importantly, how Lucia is doing.  Many people from all walks of our lives, our family members everywhere (immediate and distant), our friends all over the world, past coworkers, and many others frequently ask about Lucia.  I see this blog as a good way to communicate about her, and also a fast way to send out our requests for prayer in cases of emergency.  I've also felt that people are afraid to ask about her their sweetness and sensitivity, they don't want to make me feel uncomfortable in talking about her (which I never do by the way, I love talking about Lulu).  But just in case you fall into this category, you can read all about her right here.

Selfishly, this blog is a way for me, her mom, to have an "outlet" --maybe to vent or even to share something joyful, as much as I would want to, to a perfect stranger (because God knows who could end up reading this).    

Lastly, deep down inside, I would hope that maybe I could say something helpful to somebody out perhaps this is my way to connect with you whoever you are.  :) 

What I will try very hard to do is not sound like a great writer or make things sound poetic or pretty, because I see that as a temptation with blogs.  I was an OK english student...a really good English student when I tried REALLY hard.  I don't want to try hard, I just want to be me.

I think my next blog will be about the pregnancy and our last few months with Lucia.  Thank you for reading.