Thursday, April 18, 2013

Wow, well first things first. I need to apologize to anyone and everyone out there that may be interested in Demetri's story or anyone who may be following this blog. I have failed at the blogging thing! No excuses, just the obvious.

As I type today the little man is hanging on my legs like a monkey and pressing any button he can reach on the computer at any given time. So, you ask, why so long between posts: DEMETRI! Demetri, is the "why" to just about everything in our lives and has been since his birth but that is not to say that my husband, Isabel and Jared aren't any less of the "why". Life gets ya and swings ya around, its your job to enjoy the breeze!  My goal with this post is to 1. update on the past year and a half and 2. help myself and anyone else realize that though our CDH or special child an acutely dominant force in our lives, we must find balance and be happy. Cause as my amazing great aunt Marg always said, "you're here right... then it's not that bad" In fact, if you are here, I will stretch to say you are one lucky motha.

On this eve of the International Day of Congenital Diaphragmatic Hernia Awareness, I am reminded to stop and think about the hell CDH causes for so many. I figured, despite the wild toddler currently on steroids due to a cold, and hopping around me, yelling and dancing, I need find the time to share as much as I can. (...thank you again CDH for the absolute nightmare that we must suffer through every time our son gets a simple common cold)

Where we left off, I was reminding myself and all of you of the importance of being your child's advocate (duh.) but also knowing that fine line between your instinct and the doctors expertise. That great pediatrician I spoke of in the last post, is still amazing and thanks to CDH, I speak to him quite often. Just yesterday over the phone he told me, "Nicole, there is some art to medicine (that is where you come in) as well as some science. No doctor will ever know Demetri like you do". Wise words to remember.

Now continuing on from the last post: Following the nissen (to stop reflux, etc. from coming back up into lungs), that was completed in Spring 2011, we managed to stay out of Hokpins until June 2012 for a wild virus that even had me laid up (in hospital room, of course) for about 7 days. In between hospital stays, (that Spring '11- June '12 span) Demetri celebrated his first birthday!!! To have a big bash or not to have a big bash, that is the question. Well, here is your answer, in case you are asking this question yourself.... NOT THE BIG BASH! We of course, opted for the Big Bash. Over fifty invites including Demetri's favorite singer, surgeons, nurses, doctors, family, therapists and friends. Giant beautiful and supper cool four tier Yo Gabba cake, moon bounce, giant water slides, tents and food galore. It was a blast but looking back, I must have been suffering from temporary insanity!

Demetri received tons of presents including....wait for it.... Hand, Foot and Mouth Disease! Funny thing is, as gross as that sounds and is to me, it was a relief to know that my child had finally contracted something that wasn't going to affect his life or specifically his lungs. Hey, it was the first sick visit to the doctors that we were able to happily (rash covered) walk out of.

Within a few months following Demetri's birthday, Cardiology performed their 6 month echo and  found that the PPHN had improve enough for them to no longer require his need for continuous oxygen!!! Now we just needed a release from the pulmonary team. Ha, I remember a time that no one was controlling me or my children but me....Boy, have I been humbled. In September 2011, the pulmonary team agreed to let us try to take Demetri off of the 1/8 of a liter of oxygen that he had been weaned down to just prior to his coming home almost two years prior. It went perfectly! Well, besides the blister or skin breakdown that mommy caused from keeping the pulse ox on soooo much. Whoops, and thank God for therapists and nurses who have helped me get through without majorly injuring the little guy. Upon notice of the pre-skin breakdown, doctors and I agreed that I could let go a little and back off the pulse ox machine, because whether I was able to accept reality or not, our boy was finally off oxygen and sating in the high 90's! [Now quick, take a look back at the images of Demetri and ventilator and many many other machines in the first few posts.] One machine to go now. Feeding pump...

Now, I find myself saying things like, "thought surgeries were tough until...", "thought withdrawing was tough until..." Well, let's make it official, "I thought all of it tough, hell actually, until feeding became our focus!" Logically I understand that it is all difficult and traumatic. Plain and simple this whole thing has been traumatic for all of us, though we fully appreciate what we have, thus far the outcomes could not be improved upon and we are truly blessed but I would be a flat out liar if I didn't say it has been horrible at times. Correction, it IS horrible at times.

I read a research article once on CDH and long term effects of ECHMO (Demetri did not get). The article went on to discuss how parents were "seriously" bothered by things such as scoliosis (sometimes a side effect of CDH) as the patient became older and other major issues were no longer a concern. I remember nothing else about that article. How human of us to go from crying about our  (in most CDH cases) our baby lying on their death bed, to whining about the amount of time it takes them to learn to eat or the even, and yes I know scoliosis is serious, but complaining about the curvature in the spine. STOP: Demetri is alive! This is something I have to remind myself because I am human (surprise to many. lol) and I whine a lot!

It is so easy to loose touch, not forget, but loose touch with what you have been through and naturally want your child to be the happiest, healthiest and strongest. Then you remember: he is. That is, in comparison to what he has been through. That is the only gauge. Other kids should never be the gauge CDH or not. As I type, I remember crying because Demetri didn't walk like others his age, he didn't eat like others his age and you know what, I realized that he didn't do much of anything like other kids. He is special. Just like every child, special in their own right.

Okay, back to getting rid of that last machine, the feeding pump. Once, the O2 was gone, I stopped using the feeding pump. Period. I started to just use gravity bolus (amount ordered by docs) four times a day. I still use the feeding pump here and there like when Demetri is sick but when we found out that he would no longer be connected to O2, we decided that just maybe if we also disconnected him from the feeding pump, he may actually at the ripe age of 15 months begin to walk or at least crawl. We were right! It happens.... Demetri was crawling within a week of being off the O2 and feeding pump and then around 18 months, he began to walk!!!

Off the pump is one thing, actually eating and feeding is a whoooole different thing. Oh boy, eating. Never in all my years thought such an enjoyable experience, something so treasured around the world since the beginning of time, could be such a nightmare for Demetri. This is the part of the post that I could get most carried away with but is only important to a few of us so I will briefly bullet and if you, yeah you, ever have any specific questions, please comment or email me directly. This is what worked for me, looking back...
Dad & I on Capital Hill
-chew toys and oral stim from the hours following extubation
-a taste, a literal drip on the whoobi (pacifier) is a great start
-if the little one is eating 1/8 of a teaspoon of puree for a year, remember, they are eating!
-remember what you have been through
-eat together and always give the little one a chance to play with food WITH HANDS and utensils
-get those hands dirty with yogurt, playdough, etc. that connection is more important than you can imagine
-feeding clinics
-honey bear, nuk brush, z vibe, chew these
-it will happen, on their time NOT yours or anyone elses
-keep it light and fun with structure
-and one of my personal favs...use what ya got to get what ya want....really, I can't get Demetri to swallow anything but goldfish, so I give him a bite of pizza and then follow with a goldfish. Its the only way he will swallow that pizza, so I use it to get what I want.

I could go on forever especially since I am still fighting this battle with Demetri. And please remember officially that I am in no way a "professional" simply a mom stating what works for us.

So, long story short, eating is still a major battle we are fighting daily but we are having fun doing it. I am so lucky to be able to stay home with Demetri and work effortlessly on preparing him for his next milestones. HIS next milestones are eating, potty training and potentially getting the opportunity to learn social skills with other toddlers, not doctors and nurses who he is most comfortable with but other toddlers.
1st Trip to Hooter's!

It has been an amazing couple of years. We play, laugh and try really hard to expose him to all the joys that life has to offer (minus, anything that has a high germ risk). He is still the little fighter that he was at birth. He has made our family stronger all the while testing our every nerve. He is all boy and is therefore sporting a goose egg on his forehead at least 75% of the time. Just yesterday as he yelled "I a flyer" he flipped off the back of our couch. On the other hand, Demetri is still fighting CDH related battles. Just this week, he was sat'ing in the mid 80's and had to go back on oxygen for about 24 hours until his steroids kicked in. Minor cold. Huh! And though I never seem to overcome the "oh my God, he has a cold!" freakout, we did avoid the hospital as we have now (knock on wood) for the last three colds.
We use a lot of frozen peas.
As a family, we are all still learning to make it work day to day. Everyone in the house knows how to give neb treatments and feed with a g-tube. The kids know to "vent" when he gags and have even taken a g-tube and syringe to school for show and tell. We have had to learn since "diagnosis day" many years ago to remember that we are all equal parts of a family filled with love and most of all support. We are now fortunate enough to have Isabel and Jared (9 and 12) cheer on D at meals as he cheers them on at football and soccer games.

So, I hope I have in some way I redeemed myself for the year between posts and I hope that someone somewhere is getting something out of this. 




Thursday, January 5, 2012

First Year Home: Part One

So for the past year, probably as a result of my having Demetri home with me and having to care for him, I have neglected to journal our feelings, surgeries, events, etc. So here I am. Trying to find the words to put together and write about the last year and... blaaaaah. Nada. As the thoughts run through my mind I quickly try to avoid them. I don't want to think about any of it. Just want to focus on today, but for the sake of this blog and sharing our story I will try to write the most honest, good and bad, account of the past year. I will sum up a lot into short sentences that will never be able to effectively justify the actual moment. Nevertheless, you will get the whole story.

Christmas morning, the day after Demetri's arriving at home... What a blessing! We couldn't imagine a happier moment. Nor could we imagine a more nerve racking one. Cords, monitors, tanks, medicines, appointments, visits (by nurses and therapists) and NO SLEEP. As much as we knew Demetri, we quickly learned that without the close comfort of the best doctors, nurses and medical facilities, we were scared.
As Christmas night came to a close and the kids began to fall asleep, Demetri began crying and just could not be comforted. Within 48 hours of coming home, we rushed Demetri back to the hospital. After hearing my laundry list of Demetri's medical history, the great doctor picked our six month old bundle of joy off the hospital bed and said, "young man, I think you are withdrawing." Demetri was given a dose of morphine and was comfortably sleeping within minutes. We took Demetri home that night and weaned him off the morphine within 24 hours. (Great CDH SIDE NOTE: [dependency built upon as a result of the surgeries, etc] Narcotics SUCK... outside of their absolute necessity, and even then they still suck. Narcotic and diazapam weaning one of the worst things Demetri had to suffer through. It was horrendous for us as well)

So that was just the beginning. Literally. Within the next couple of weeks, we learned how to survive on less than 2 hours of sleep a night, fix breakfast lunch and dinner for ourselves and three other children, clean house, oh and take care of a special needs baby. "Special Needs". Ha, I used to deny the crap out of that term, but no more. My son has many special needs and that is that. At the time (beginning of 2010) Demetri's "specials" as I like to call them, to name a few, were puking/changing bed linens and clothing at least three times a day due to severe reflux, continuous feeds via feeding pump/g-tube, 1/8 of a liter continuous oxygen a.k.a. heavy tanks to carry around, 4 different medications twice a day, home nursing, occupational and physical therapy and then of course there are the "non-specials" that come with every baby like your standard diaper change. I am certain that had I wrote this back then when I was just learning these processes and techniques, I would have written a lot more with a lot more detail. Nevertheless, we did it all and we did it tired, grouchy but never without a true feeling of genuine appreciation for all that we have.

I remember taking Demetri to the doctors (pediatrician) for the first time. It had been a little over a week since he came home because of the holidays. So there I was, walking into the doctors office with Demetri, carrier, stroller, two monitors, O2 tank, diaper bag, feeding pump and enough hoses and cords to stretch across the Grand Canyon. I remember someone asking if I needed help. I kindly replied that I needed to learn and declined any assistance. Then we met with Demetri's doctor. I didn't look at the other kids in the office or notice if the nurse or doctor washed their hands (though I am sure they did). Nor did I notice the tissue paper on the scale and whether or not Demetri touched anything other than that tissue.

The doctor and I started talking. He received Demetri's "book" from Hopkins, so he was pretty up to speed on everything we were and had dealt with. I felt very comfortable with him and his knowledge of CDH, ASD, and PPHN (three of our biggest concerns at the time). The doctor told me an amazing story about a CDH baby girl he delivered 20 years ago. He told me that she just sent him an invitation to her graduation! I cried. Then I asked him if Demetri could live that long. Amazingly enough, I was still asking that question. I should know better. No one knows, outside of the lord, the answer to this question, but I kept trying to find a human to give me this guarantee. He looked at me and told me that Demetri may very well end up back in the hospital and that his life, like any of ours could be cut short by many things but if I wanted a clearer answer as far as Demetri's heart and lungs were concerned, well then I should talk in depth with his cardiologist and pulmonologist. With that said, oh and a brief mention of my getting more sleep, he sent us on our way.

I was so sure of everything the doctor said except the part about us ending up back in the hospital...that comment, I was sure, was wrong and quite negative...And then we wound up back in the hospital!

Sometime in late January,early February Demetri began coughing more than normal so we took him to his pulmonologist. NOTE: Not his Hopkins pulmonologist but one that came highly recommended from another CDHstenosis and pneumonia. The pulmonary vein stenosis was very scary. Is very scary. The fact is that it may be a life threatening issue in which each pulmonary vein closes off one at a time leading to death OR (and "most likely" per cardiology) that pulmonary vein has a "kink" as a result of the movement in the chest following the CDH repair.

After a week of antibiotics Demetri improved enough to come back home! But not without a new tube... An ND tube was placed for feeding to reduce the possibility of him aspirating and getting pneumonia again.

SIDE NOTE: There is a very, verrry, fine line between advocating for your child and listening to the men and women who study for YEARS to know exactly how to advocate for your child. The doctors sent us home with the ND because they knew that Demetri's reflux was bad and that his puking may have led to his getting pneumonia, which could lead to his PPHN coming back or worsening, and either or both of those could lead to his very premature death. Unfortunately we didn't get that very serious memo. I mean, we were probably told, we just didn't get it. WE DO NOW.

After a few days at home, tired and sick of the ND. We pulled it. After all, Demetri was better. He was happy again, he wasn't coughing and really wasn't puking that bad. Maybe once or twice a day. Okay, I take it back, we didn't pull it, we thought that it pulled out of place so we figured we might as well pull it the rest of the way out. Remember what I said about the doctors who studied so hard and the whole possibility of another, harsher pneumonia bout...Yep, that were to follow.

So back to Hopkins with us all. Initially we all thought the worst. We all, including the doctors, thought that maybe Demetri's pulmonary vein stenosis was worsening.. After many more test and a very scary trip back to the PICU, it was determined that Demetri again had pneumonia. Our GI doctor and surgeon discussed the only happy and safest alternative which would be another surgery. When Demetri improved enough, he went into surgery for the nissen to reduce the possibility of anything coming up and out of his belly. This, if you have been playing close enough attention, was the procedure that I refused when the g-tube was placed during that surgery back in December. Again, there is that fine line between advocating and placing a certain trust with the doctors who have mucho knowledge when it comes to this stuff. I guess looking back, I should have just listened a lot more and listened to a lot more. Meaning: I should have asked a lot more questions and really pondered on what the doctors and I discussed.

After a short recovery from the nissen Demetri and I headed home again!

We'll call this part one. I am physically and mentally exhausted just from rehashing this stuff. Part two of D's first year at home to come. Heads up...It gets much better!

Sunday, September 18, 2011

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.

Saturday, September 17, 2011

Following the ASD Repair & Some JHH Fashion


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.

Friday, August 26, 2011

Just Kidding...


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...

Friday, August 5, 2011

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! 

Monday, August 1, 2011

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 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.