The Long Awaited Homecoming

December 24, 2010

Today you are coming home!!!

It has been a while since I have written. We have been very busy. After Halloween we all decided that it probably a good thing to get you into a smaller, more therapeutic setting. So for the first time, you saw the light of day as you were shipped off to Mount Washington Pediatric Hospital. I loved it from day one but couldn't help from feeling sad as we rolled away from the family at JHH and NICU that we have grown to know and love.
At Mount Washington the goal was to get you off the narcotics and to get you eating. The narcotic wean went terribly slow and the eating...well, that didn't go great either. On Jared's [Demetri's big bro] birthday, December 17th, we shipped you back to JHH to have the g-tube surgery. Side note: make sure Jared has an awesome birthday in 2011, because he officially got robbed this year.
We decided to go ahead with the g-tube, no nissen at a family meeting in early December, we agreed that though I was 100% against another surgery, we want you home where you can thrive. You, of course, whooped up on that surgery and per my request didn't even get more than 12 hours of pain medicine following. So, needless to say you were ready to be shipped back to Mt Washington in a couple of days. From there, we continued the last of the methadone weans and enjoyed some much needed play time.
Mount Washington was just what the doctor ordered, no pun intended, to prepare us for the transition home. I remember the therapists coming into the room and asking if I would bring you to the playroom. Not an odd request at all for the average mommy?!... But for you and I... I instantaneously realized that I had never walked anywhere with you! As we walked down the hall, she beside me pulling your O2 tank, I felt as though my legs might buckle. I mention this because I never want you or anyone who reads this to ever take for granted one second with their baby. Imagine someone... finally, granting you the opportunity to walk down a hall with your baby. Unthinkable.
 Though we LOVE Mount Washington, we are ready to go! I think we have all had enough and I am looking forward to not spending 3+ hours a day in the car. Today is finally the day! Though, in true Demetri form, not without drama and pain. Yesterday you lost a family member that I would have loved for you to have known. He would have been like a grandpa to you. And you to him, a grandson. I know, though you two never met, that he loved you to pieces and will now watch over you as well as he will me and your mom-mom/yaya. But don't you worry, I'm gonna tell you all about Uncle Mickey as now that you are going to be home, we'll have plenty more time to chat, you and I.
In addition to Uncle Mickey leaving us, you created a little drama this morning. The doctor just called and said that she may not want to send you home because your heart rate is high and you have a fever which may mean that you have a little virus. Good thing for you that I know you better than her, and I know that you are just withdrawing off that stupid methadone and your gonna be just fine. Suck it up tough guy, cause momma is on her way!

Getting your belongings and putting you in the car seat is just surreal. I thought this moment may never come so many times. We cringe with excitement. I will never forget your father and I gazing at each other with the purest joy. It was finally our turn to get outta here. We take pics and see nothing as we head for the exit but the doors and our car warming just beyond them. As we pull away from the hospital, you look as happy yet as concerned as we do! Then...blaaaaaah. You spit up everywhere! Yep, I am with you buddy. That is exactly how i felt! Just know how to control myself a little better I suppose. Don't worry, we have plenty of time to work on that. 
Home was never so close. So close. Our hour and a half drive felt like ten minutes. As we entered the house and your sisters and brother joyfully bounced around in disbelief, it hit us that you were now ALL ours. Machines, tubes, monitors and all. You were ours. Finally! Santa could officially skip our house because we, even if just for that night, had all that we needed, we had each other. A complete family, at home and together at last. Merry Christmas to all and to all a good night.

Following the ASD Repair & Some JHH Fashion

10-17-2010

Funny how I stop writing during the most critical of times. So now I play catch up...Demetri, I pray that your desire to survive is always as strong as it has been during the first 3 months of your life. Almost two weeks ago you had open heart surgery. Docs said that it was critically needed. The ASD repair is supposed to reduce your PPHN. You look so much better and your breathing is so much better. Anyway, a week ago I was so scared and frustrated. Really I couldn't see the positives. Only heard the doctors saying again, that this would be tricky as your anatomy would create a load of challenges that this surgery normally wouldn't present.With that said, at around 5:30am, daddy and I held you, we cried and we prayed. We then rolled you, again, with a team of doctors, into the OR. We said, "see you in  a little while buddy" as they closed the doors.Wait....Pause...let me just stop to note that it was raining again. Seems to be a trend developing here with you and the rain....Okay continue...You were in surgery this time for 5 looong hours but everytime the doctors and nurses called to give us an update, they told us that you were doing just fine. Well, DUH!!! Cause you are super baby! After surgery, your stunning Italian surgeon met with daddy and I to let us know that you did super awesome and that even though your heart is somewhat upside-down and backwards, it works great!

In the days following the surgery, back to the PICU, you now covered in tubes, tape, IV poles and more, your heart did stop a couple of times. Once they even had to begin chest compressions. They were just pumping you with tooo much narcotic. So I stopped that really quick, and needless to say, no more heart stopping and off the vent!
Now you are back in the NICU where everyone was so happy to see you again. Cool thing is, as odd as this may sound, on the day of surgery you tested positive for mrsa [yuck and ughhh] so they put you on precaution. Every test [mrsa] that they did after that first one came back negative but they still have to keep you on precaution which means we get a huge private room. Bad news is that I am not supposed to touch you with skin, [yeah right] so its gloves and gowns until the precaution is removed... Really cute. More like HOT! No really, your dad might actually catch on fire in  one of those gowns!

Outside of the gowns and gloves, all is great, we are working on feeding you more and drugging you less. I am enjoying our private time together while Isy is in school. I bring my computer and books so that you can watch movies and learn about more than medicine and these drab walls. For Halloween you will be a doctor and we will all come to visit you in costume. Well, not me and daddy but Isabel and Jared.

Now we pray and ask for prayer that you are really on your way outta here this time, healed and healthy. In the meantime, I truly could be the luckiest mother on earth to have two of the most strong willed, perfect angels on earth to call mine. I love you Isabel and Demetri.

Just Kidding...

10-4-2010

We'll call this entry "JK" because when the docs told us that Demetri would not need surgery on his heart until he was older due to his little leaky heart, they were JUST KIDDING, because now a week or so later, they are saying in a certain blunt and awkward tone that they "will need to do open heart surgery on Demetri this week." WTH... Now I am tired and frustrated. Just stick a fork in me, cause I am done! I was so sure that this was all about to be behind us and now another surgery. Open-heart surgery! Remember the "talk" that followed our last surgery...The "we don't think he is going to make it" talk... This is horrible!!! Back to square one: another trip and stay in the frickin PICU, possible death, loads of IV poles filled with dangerous meds, another scary, scary scar, days of horror and intubated again. This is the pits. So I guess I should switch my prayer back from "speedy healthy trip home" to "survive another second." I am allowed to say at this point that I am exhausted and so frickin mad at CDH and ASD and everything that I just wanna run as fast and as far as I can from it all. No family should have to go through this. The baby is suffering, the kids are all suffering, and Hector and I are barely hanging onto consciousness let alone our sanity. This experience gets crazier every darn day.

I am so happy for the families that we meet who all give us inspiration, prayers and love. On the other hand, I am sick of seeing them watch that darn car seat video and get to leave with their baby. Why God, why won't you just let this be fixed and let us go home.Why hasn't God forgiven us yet. I do feel forgiven and blessed every single moment that I get to spend with our angels (Isabel and Demetri) but why must we all suffer like this? Oh I remember, and now I call it our life lesson, the only one we all will ever need.... Never ask the man, the man, the G..O...D, God, never ever ask him, "What else!" Because ladies and gentlemen, he WILL show you what else in ways you can never imagine!!! For the record, I asked God "what else" just days before our 20 week ultrasound. It was something to do with $$$ and bills. Stupid! Well, he told me... he is still telling me. Guess he wants to make sure that I REALLY get it. So, again, NEVER ask God, "what else."

In the meantime, we prepare again for another round of paralytics, surgery, fear, crying, joy, thankfulness, uncertainty, etc. Today as I wonder, why us, I thought I knew the life lesson and learned from it, but I guess the real life lesson [in addition to, maybe even trumping the one above] is that NOTHING is certain, nothing ever. I love. I love a lot. And that is all I can do to try to fullfill my spirit as I let God take care of the rest. Now let's do this and get the heck home...

Sophie's Choice: good film but could have done w/o the real life experience

9-25-10 It doesn't matter that every possible awaken moment is spent as Hopkins or whether the nurses and doctors tell me to leave b/c I need a break too, I can't get enough of the little guy and I can't help feeling disgusted by the fact that I am not the baby's primary care giver. I am like an extra special guest or visitor to him. It's degrading, as a self respecting mother, to leave your child at the end of everyday, or call and check on you child as someone else cares for him, especially when he is sick! When Isy is sick, I do not leave her side. Wouldn't think of it, but I am force to leave him. 
Speaking of Isy, the love of my life and best friend, I have had to leave her too. Can someone say, SOPHIE'S CHIOCE! I have an amazing sister in law, who has made my life a million times easier this summer by taking awesome care of my angel girl, but that doesn't change the fact that my angel girl is not with me. I hate this SO much it stinks!
I guess my reason for this nagging entry is that I am leaving the Children's House this week. No more will I be steps away from my son. I must return to Frederick. I have to get back to some normalcy. I must return to my daughter. But returning to my daughter means leaving my son and it hurts like hell. LOL, and what am I talking about "normalcy"!? I will get home to Isabel and start to prepare her for 1st grade, but not without making a trip to this hellish city [a city I truly adore, its just hot, humid and dangerous here right now] everyday, at least once a day and sometimes twice. My plan is to get Isabel and Jared on the bus and then head straight to Baltimore, visit the baby, then make it home for the bus by 4pm, and then some nights return after I get Isabel to bed at 8. This will get me back to the hospital around 9:30. And then I will head back to Frederick around 12am. But on school days (Mondays and Thursdays) I will take them to the bus, get to the hospital by 10ish, leave for class around 12, get done with classes at 10:45pm, catch a cab back to Hopkins and sit with baby until about 12am and then drive home...Guess I won't see Isy on those nights. But I promise her that I will climb right in her bed to snuggle when I do make it home on my school nights. Another thing not normal about all this is the frickin $$$. Gas! I shall say no more.... but I will....eating every meal downtown...and not hood downtown where one can get some slammin chow!!!, no we are talking university downtown...where apparently someone hasn't gotten the memo that us college kids...especially JHH students are BROKE!!!... and in addition to the food and gas, there is parking. I have to park my car and pay for 12 hours of parking everyday and then take a cab back and forth to school which also costs about $20 a day.  Regradless, its time for me to go home.I must prepare for the little man to come home! Not that anyone has breathed a word of such nonsense.... however, if the lord allows,Demetri will continue to heal and be home soon, snuggling with me and Isabel!

In the meantime we are still in this up and down, up and down world. Residents have moved on, meds have disappeared!, reappeared, and disappeared again. I am starting to get a little pushier with the docs because, though I respect them, I am the mom... Therefore, I AM THE BOSS! Ha! Who am I kidding! Demetri is the boss, and that is the Golden Rule these days!

Tomorrow will be a blessed awesome day, if you are willing Demetri! Isabel has picked a book to read to you as she courageously holds your precious little body still covered in cords. I can't wait! 

Some Smiles & Welcoming L!

9-15-2010 What a glorious day! After two days more of putting my beautiful son through hell, we now have word that his brain and heart are working pretty good. I have been well trained now, like batman style training, (harsh!), to follow statements like, "brain and heart are working pretty good", with the very specific phrase, "FOR NOW"... Because I officially know now that everything can change in seconds. But I can't help but think, despite my hardening/realist training, that everything is going to be just fine. Days like this bring the spark back into my eyes. I do know that we have a looooooong road ahead but you, my dear boy, smiled today!!! They have all said that you have smiled before. Hard to believe with all the withdrawing and sedation and sickness and poking and pronging, but they say you have (nurses and daddy). I know that today you smiled at me, and you weren't even terribly stoned. Stop now, whomever may read this. Please pause and really think about how awesome and how life altering, one tiny little smile can be. LOOK and STOP, for just a minute and think about someone you love and how awesome being able to see their smile anytime is. To my babies, smile at yourselves...You have made it through hellish circumstances. Smile every second you have here. Back to the present...Demetri, you smiled such big beautiful and meaningful smile at me today. What a sight! You must know (with all intentions that you and your sister will read this someday), that I literally worship you two. You both are my entire being, my desire for being, and under the worst of cases, you are the root of my desire for not wanting to be as I could simply not "be" without you two. Thank you both for smiling, you Isy, every single day simply because you know it makes mommy happy, and Demetri, thank you dear for this first smile, this first smile being your way of preparing me for a long lifetime more to come. I love you both.

Another CDH baby was born tonight. To see things happen from this end was overwhelming to say the least. I saw Sam and other transport nurses and RT running out of the NICU and felt more mumble-jumble than ever before. Happy and joyful-there is a baby being born...Sick-that baby has a CDH....I wanted to break through those labor and delivery doors and hug and squeeze those parents and foresee and withdraw all of the pain that I knew they were about to face. Crap. But that wasn't happening, b/c 1. everyone would assume that I had finally lost it...and 2. I may not be able to visit my SMILING boy anymore. Instead, I will pray, pray and pray some more for that family and their new baby. I will pray that they be granted the strength that we have all been granted.

Speaking of strength, your father Demetri, that big brown thing that apparently has ants in his pants b/c he cannot sit in here for more than ten minutes, but yet he can't sit in the waiting room for more than ten minutes, oh and yet he can't walk around for more than ten minutes because then he starts wondering about you again. Yeah, that guy, he is the biggest, baddest warrior ever. This is part of where you get it from..you are strong like him...Mostly from me though. lol.Your father, no matter how much of a fricken handful he can be, is a true warrior. With that other CDH baby being born tonight, made me think a lot about the night you were born. When I pushed you into this glorious world, I couldn't hear you or feel you but I saw your beauty. Oh God what beauty. Then you were ripped away with great intensity. Horrifying but lovely. Now look at you!!! You are one tough cookie. I love you and your equally as strong sister with all my heart and body and pray that the lord have mercy and allow us a long life together on this earth. You get to go into a crib!!!! For the first time!!! Amen! Can't wait to come back to see you tomorrow.


Update: That CDH baby born on 9/15 and his awesome family turned out to be just as blessed and as strong as Demetri and our family. The two, Demetri and his buddy L, spent months upon months moving about Hopkins together and even slept just feet away from one another in some of their most turbulent weeks in the PICU. Demetri and this CDH pal are today BFF's and are planning their first play date since attending NICU graduation together. And to his mommy, I love you girl, and could not have made it through this year without you.

The One that Every CDH Mom-to-be Should Read...Maybe

9-14-2010 What a journey we have all experienced thus far! Up and down, up and down and around we go. No one, no tour, no consultation, no testing, or research could EVER have prepared us for this. I can't help but cry over and over for the pain that my son has had to endure. They say he will never remember, but I will. I have laughed, cried, and prayed like no other time in my life. We are now eight weeks into Demetri's life (I think..time has slipped from comprehension these days) and eight months into this nightmare. Right now I have no idea when it will end. I have lost total control of everything. I want him to be better SO BAD but I can do nothing but touch him and let him know I am there. So, today, after weeks of NICU, PICU, High Frequency Vents, conventional vents, CPAP, supplements, lines, central lines, viagra?!, [I get it now but initially it sounded a little silly]PPHN, intubated, extubated, re-intubated, diuretics, nitrix oxide, wacky anatomy, hypertension, hypotensive, lung disease, de-sat, bradying,seizures, strokes,EEG,EKG, "Shooting X-Ray", ERG, MRI, Cardiac Cath, Echocardiogram, Blood Gases, PIO2, NG, ND, suction, ECMO, death, oh and by the way, a diaphragmatic hernia....cerebral fluid, blockages, shunt, splints, brain damage, upper gi, lower gi, acid reflux... [oh that's one that would stick!]...So today we know, oh wait, ASD, PDA, hole in the heart... So today as I sit...more... messed up bowls and intesitnes, (can't even remember what that one is called off the top of my head). So today as I sit I can only wonder what new condition or tube Demetri will have in the morning. Tomorrow Demetri will get a MRI, and the lord willing, will let him prepare for a healthy normal trip home. Today Demetri went to the Cath Lab. No need for heart surgery now they say! Another awesome day because we are all alive and breathing but another night of uncertainty and fear of what tomorrow will bring. Thanks Amie [best RN/friend EVER] for this journal!

In regards to the title of this post...I see this entry as a eight week sum-up... I think that though many, like us, continue to deal with new complications even today, overall the first eight weeks either numbed us or prepared us perfectly for the future. Though still turbulent and uncertain at times, what we lived during those first weeks was indescribable. My goal with this entry is NOT to scare off anyone, it is to share what may be and what can be...For us what can be has become pure beauty: Our life with Demetri today is hard work but rewarding and precious. We value every moment, every moment, with of course the occasional break down. Usually the break down comes with a silly incident like his g-tube leaking on his sheets while he sleeps...AHHH! But always within seconds we remember and our tantrums turn to glory once again.

I am looking forward to the next post. Hopefully I will have time post soon but with Demetri's birthday !!! coming in the next couple of weeks, posting may have to wait....As the next post will tell, Demetri's Cath Lab results as everything else were not a sure thing...And as a matter of fact he was no where near coming home...Stay Tuned. And Thank You for reading our story.  

Paralytics, Extubating & You In My Arms... Oh my!

8/31/10- Demetri was "asleep" for days, maybe weeks, but everyday the doctors said that he "is doing remarkably well" and slowly improving. They said that the lungs are little by little pumping themselves back up. Apparently this whole PICU adventure began with Demetri's already crappy lungs collapsing. Hector's amazing family continues to visit, along with a couple of our friends, as much as they can. I shouldn't even say that. I mean they don't visit as much as they can, I mean they take time out of their crazy busy lives just to stare at my son a couple hours a week. Maybe they are praying, maybe they are there for us, but either way they are there and that means a ton. I mention this not b/c I am not mad at who can't visit by any means, it is just that I notice things now. I notice my family and more importantly, I notice that people love me. They genuinely love our family and our son. Some days, no matter how mad I can be at the world for all this, I find myself coming to happy tears thinking about just how much love and support we have received. Anyway, back to the baby. In the past three weeks I have really neglected this journal. So this entry is, well, like the others, is clearly going to be action packed.

Back to the "asleep" days. Having this funky jelly over Demetri's eyes was hard to explain to our visitors. The jelly was to keep Demetri's eyes moist and protected as he slept and was, I guess paralyzed to the point that he didn't have control of them. It was never, like the high frequency or ossilator vent [the ventilator that provided Demetri with well over a hundred breathes a minute and made his little body pounce about like a...hmm... can't think of anything but maybe like a massaging chair that kind of thumps really quick down your back], it was never, freakish or scary to me; it just was. But to explain it to others, the high frequency vent or the jelly in the half opened blank eyes of my son, made me realize how horrifying it must have looked [how horrifying it was]. Really, a little baby covered in tubes and wires going into unthinkable holes [belly button, wrist, side of chest, head, nose, mouth, hiney, penis, foot, oh and inner right thigh] and chest pouncing several hundred times per minute and eyes glazed over with a morbid blankness covered in jelly. Ughh. Even sounds bad in my head as I write it, can't imagine what it actually looked like. Cause really, I didn't see it. Just saw my baby. Maybe it was because I was there everyday and I was just used to it. I mean, I saw the stuff, I still see "the stuff" but they only bother me because I just want the gone and therefore him better.

Still in the PICU, Demetri was slowly weaned from the high frequency vent to the conventional one and then.... Drum roll please..... EXTUBATED!!! WoooHooo! Well, not all woohoo but woohoo. The time has come where we had to return to a little, just a little bit of normalcy. With the kids and I returning to school, Hector and I had begun taking turns staying at the Children's House while the other stayed at home [an hour and a half away from Hopkins]. On the day the docs decided to attempt the extubating, I was home with the kids. So, Hector went. All went well but Hector said that while they were pulling the tube he [Hector] thought he was going to pass out from holding his breathe! What a sight that must have been! The nurses always warn Hector that they only take care of the little ones, so if his big butt passes out they are not going to know what to do with him! Anyway, once extubated, the nurses had strict orders from me to shove that pacifier right in his mouth to get his sucking instinct going. They did and he went right with it! Then came that infamous cry that we had waited so long for! It wasn't long at all before that came. Once the kids were in bed, I was able to drive to Hopkins that night and by then Demetri was already making all kinds of little noises. I say little because it wasn't this belting baby cry that we are used to. It was this faint and very horse whisper of a cry but what a glorious one. My baby was breathing all on his own!!! What a moment when I walked in that room. Every nurse and doctor that passed our bed side [knowing them all quite well at this point] smiled and hugged me with joy! It was so exciting!

Within minutes of my standing there in utter amazement, Demetri's nurse asked if I was ready to hold him! AHHHHH! Yeah! What a freaking day! All this time and pain and joy and pain and joy and now I finally get to hold and hear my son! As the nurse prepared Demetri, still all tubed up with IV's, ng, and then some, for me to hold him I began to go a little numb. I remember her asking if I wanted a chair or if I wanted to stand. lol. I thought to myself, we better get that chair. My knees were shaking and maybe it was adrenaline but I felt funny all over. I remember thinking, just for a slither of a second, how much it sucked that Hector wasn't there. But I got over that real quick. Hector, another reason for me to realize his awesomeness. He was asked earlier when he watched Demetri get extubatedWhata guy! He was probably quite scared himself to hold the little guy. So anyway back to the moment! Oh what a feeling when his little warm body laid on mine. In my arms finally. I heard nothing and saw nothing but him. Close to four hours later when the nurse insisted that I not get a blood clot in my leg and she be able to give him his meds and change his diaper, I placed him back in his bed and returned home to the rest of my peacefully resting family.

So there it is. Our days in the PICU. With this monumental forward progress including breathing on his own, Demetri has been gladly booted out of the PICU today. He just is not PICU worthy anymore and I am totally cool with that. However, things are still no where near perfect as Demetri sets up shop back down in the NICU with his old buddies. Demetri didn't last long without oxygen as his pulmonary hypertension is still bad and his tachypnea [rapid breathing] is scaring the docs but he is still breathing on his own. Just needs quite a bit of a flow of O2 coming in to do so.He also is still on a massive amount of drugs that we now have to begin to very slowly wean him off of. Either way, we are totally blessed and looking forward to our future together. Thank you God for getting us through this. Everyday, thank you.