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.

Surgery & The Drama That Followed

7/28/10- Why didn't someone say this was NOT just about a silly hole in my son's diaphragm? Guess that wouldn't have mattered anyway. Staying at the Children's House across the street from Hopkins and have been here since discharge. What a blessing this place is. Every night there is a different group of wonderful people making us dinner and even giving massages. But not really out of the ordinary for me, I just stay in my room. Maybe as things improve I will want to be out there chatting and enjoying the company of others. In some ways it is hard being here. The Children's House is for family of sick kids which means running around just outside my room door is a bunch of sick kids. More pain. I can't see right now, the beauty in the fact that these children, hairless, morbidly thin or otherwise, are smiling and giggling as they roll or run through the halls. Why would one with the power to make our world great do this?

A few hours ago I met with Dr. Stewart. Hector couldn't be there so I met with him alone against his wishes. Following our meeting I understood why he wanted the both of us there. Now as I gaze with a true hatred toward a church steeple beyond my window pane, I brace myself for Demetri's repair surgery tomorrow. Dr. Stewart pulled me into one of those "rooms" and proceeded to tell me how he is doing surgery tomorrow b/c he just doesn't see anything getting any better and that to keep waiting probably wouldn't make things any better. He is not confident at all in what may come of tomorrow's surgery as Demetri's pulmonary hypertension is still pretty severe despite every effort to curb it. I kept it together as much as possible as we spoke and then raced to this room to call Hector. I told Hector the only words I could really remember, Dr. Stewart saying, "I am really concerned that Demetri might not make it through surgery tomorrow." And coming from Dr. Stewart, that is terrifying. I have worshiped him since day one [D or Diagnosis Day back at 20 weeks] mainly b/c of his educated optimism and now he too is questioning Demetri's ability to survive this. As if surgery wasn't scary enough. So tomorrow it is. Now we pray. Funny, a few statements ago I mentioned staring at this damn steeple that almost seems to be staring back at me. I can't help being mad at my God. And that stinks b/c I really don't need him being mad at me. I read today in the Bible about those who question faith and the mother who suffers as a result [in so many words]...Let me make this clear, I may be mad but my faith has never been so strong. It all makes sense. My growing up in this hellish city, now results in our being patients at the best hospital in the nation. That's all you God, and I get it. But golly, you sir have seen my life thus far, right? Did you really think I needed more pain? More drama? You wanted me listening! Here I am! Closer than ever and this time for good.

Hours Later- Lol. So I go to eat after quiet time begins and all is asleep. [didn't want to spread my yucky mood and puffy eyes] Really, how would it look for those beautiful little sick children out there to be asking me what was wrong and telling me that everything would be okay.. God give me their strength. Anyway, so I go eat alone and in the dark, quietly not to wake anyone. I start to eat and low and behold another stinkin steeple just right there out the kitchen window. That thing was just standing all tall above the other city buildings seemingly just waiting for me to catch it with my eyes. Weird. Nope. That is what this faith is all about. So I start to walk around this pretty big building peeking out of every window, this time on the hunt for them. He was there. His channels were there. Out of every window I quietly crept to, there stood, one more gorgeous than the next: a church steeple. Thank you. Thank you for letting me know you are there.

My anger is fading. My patience is limited. My faith is broadening. Bring it on CDH, because tomorrow your gonna meet your match.

7/29/10- What a day. Raining. Dreary as hell, but a cautious celebration is in the air. Demetri not only survived surgery, he aced it. Such an awesome little guy. He didn't even have to go to the PICU. Back in the NICU to the surprise of all and doing great. This morning bright and early our troops met in the NICU for prayers and comforting. Crowds of nurses and doctors prepared Demetri as we looked on. I can't explain now the fear in me, but it was thick. I wanted to just cry and cry. Not b/c I was afraid he wasn't going to make it. See now, another thing I read in the Bible yesterday was about forgiveness and how when it rained you would know you were forgiven. Whaaatmeds, even more tubes and lines, and a new scar at the ripe age of 10 days old. Is it Dr. Dre that said, "today was a good day." Either way, today was a good day!

8/5/10- The 'honeymoon" phase has officially ended. After a few days of up and down Demetri has ended up in the PICU for ECMO consideration. Yep, DID NOT see that coming. Let's start at the beginning. First of all, I am never ever drinking alcohol again. Last night, [I think, not even sure what day it is at this point] Hector and I decided to relax, watch Big Brother, have a nice quiet dinner and have a glass of wine. Just one glass. So I pumped my last keeper pump of the night, called over to the NICU to check on the little guy who was doing okay and was stable, another words, no new news, and laid down to watch Big Brother and drink this ONE glass of wine. It was wonderful. This sense of happiness and calm came over me like everything was coming into place. On the other hand, I was thinking, what if I have to go to the hospital for some reason. Well, when in doubt.... A few hours later as Hector and I slept, the phones began to ring. All at once it seemed. The Children's House phone. My cell phone. Hector's cell phone. Hector had to answer. I couldn't. Too scared. It was that call. Demetri had taken a turn for the worse and the doctor suggested that we walk over to the hospital immediately. I think it was about 2 or 3 in the morning. We were in the NICU within 3 minutes. The worst was happening. Demetri's color was just not right. I didn't look at his numbers on the monitors. I just stared at him. I know there were about 15 doctors and staff around him but I didn't pay them any attention either. Accept for Amie. I saw her. Amie is D's primary. I saw her eyes and though she was in full professional focus mode, she looked scared. The doctor told me to place my hands at Demetri's head and feet and to get close for him to sense me. I did so gladly until they told us to go. They transported Demetri to the PICU. The worst. PICU for ECMO. We know this. Only problem. Demetri is like rare art inside sto ECMO for him would mean open-heart surgery and in his condition... For the next 3 hours [felt like days] we sat in another one of those "rooms" waiting. When the PICU officially took over and Amie was released, she came to us and cried with me. She said nothing, but she cried with me. Oh it was hell. Hector and I sat and sat. Hector. As much hell as we had been through and as much as we had tried to bite each others heads of through this, this morning I couldn't have thought of anyone else in the world I would have rather have been sitting with. Nothing could ever threaten us. This would bond us like nothing else. I love you Hector Silva and I am so sorry that you have to go through this. hector just held me and told me how everything was going to be fine. When the doctor came to tell us that there was nothing else to be done and it was going to be up to Demetri but it wasn't likely that Demetri would make it, Hector grabbed my arm as I ran for the room. He ask was I sure. Did I want to see the baby on what the pregnant doctor said was his death bed. I ran to our son and Hector closely followed.

The nurses, just as angel-like as our NICU friends, warned us that Demetri would be on paralytics for a while but told us that we should bring music and talk to him as much as possible. This will be our relationship with Demetri for now. FOR NOW. No ECMO, not an option, just faith and music and our voices. We got this, but first I need some sleep. That was dramatic as hell. Sleep now son, and dream of the brother and sisters and other family and friends that you have met, dream of everything we have spoke of and everything you will be on this great Earth. We will be right here after you have rested waiting to again to look into your precious eyes. I will bring you some tunes shortly.

The Big Day...Well, not as big as the many days to follow.

7/21/10- Well that was interesting. Gotta love the hospital/university...AKA...We are are really really smart but we are still learning. Yikes. Plus why didn't I pay attention earlier to the fact that these folks [the docs] start their residency or whatever programs in July! One of them actually made a joke that one should never have their appendix bust in July b/c it is a first year surgery that they all must do. Geezzz. Either way I know that this little angel is in the best-i-ty-best of hands. Me on the other hand. Well, I guess I should start with labor. No epidural! Not that I was one of those crazies who wanted to attempt a natural child birth, it was just that the docs couldn't find the spot to make me numb. Yikes! So here comes Demetri just as quick and easy as his sister. Push, push, baby. Only this time baby wasn't dropped onto my chest. This time baby wasn't being suctioned to cry. This time, once the docs let me look at his beautiful little body with their hand over his mouth, they rushed him to the other side of the room where a blilliant team of RT's, nurses and doctors formed what I can only describe as a human igloo. They hovered over him with a seriousness that I have never witnessed. They were mumbling at each other but I couldn't hear a word. As a stared over toward them, one of the doctors came to me and said that everything is going as fine as it could right now and that they would call me as soon as they we ready for me to see him. My thoughts: well, its literally not in my control anymore.

One would think that the next few hours waiting would be the worst but I knew that as long as they didn't come pilng into the room with their somber, no, blank, expressions on their faces[the docs], everything was going okay. When the time came that we were able to see Demetri, I didn't go. [there is some honesty for ya] I couldn't, I even pretended that I was asleep for a while. And I can't remember if it were my mom or Hector, but someone pushed me. I didn't want to and I told them that I didn't want to even see him knowing that maybe he would die soon. I went reluctantly b/c I knew it was the right thing to do. Oh, and by the way, every time Hector would go or anyone else, and they would come back to the room, I could so tell that they had just seen hell on earth: our baby on a vent fighting for his life.My family. like the hardest and toughest people around looked terrified! They had this look of pity like they felt so bad for me. Yuck, no pity please we just had a baby! Horay, or congrats would be nice.  

Hector wheeled me into the room where, I don't know, like ten other babies were also being treated. But they didn't have nothin on our guy. Whoa. Holy machines. There are even more today. The wonderful nurse started talking and explaining. I must have looked like a drugged zombie to her b/c I had no idea what she was talking about and I know my medicine. All I could see was a room full of pain. Horrible pain and NOTHING could have prepared me for that moment. Demetri was so beautiful. Still is. His little body was just pumpin and machines and tubes were coming from everywhere. That really didn't phase me. Maybe I just can't remember b/c I was in so much shock. It was only a couple of days ago. Hmm. Nope, I didn't hear the nurse, in fact I didn't even see her, I just saw horrid pain in little itty bitty bodies that could not have done anything to deserve what they were enduring. It was, and still is, like I knew somehow my boy would just have to tough this out. He is tough. It's in his blood to prevail, but what about the rest of them?

Well, that was birth, it was the baddest [like Micheal Jackson "bad"] roller coaster ride I have ever been on.
In the few days since, I am oddly really happy. Dr. Stewart [surgeon] keeps telling us how proud he is of Demetri. I keep pumping like an industrial cow and visiting Demetri in very small intervals. Hope the nurses don't think I am terrible. Guess they know everyone copes differently. I feel useless when I sit there. They are just working away on him, my kid, while I just sit there. Sucks. They are freaking awesome. What a person it takes to do that job. Love them already. And Demetri's little "primary" crew...couldn't get a better bunch.

Going to try to sleep now. The next few weeks are sure to be crazy with surgery and recovery. Prayer, prayer and more prayer. Slow and steady I guess. In the meantime, I want to be sure to write this so I can remember these things that most of us totally take for granted: No taking baby and car seat home when you get discharged, "live birth certificate" and SS card application process has a whole new fricked up meaning (kind of crappy thinking that by the time these things arrive in the mail, baby, well., nevermind... no crying baby, and the #1 thing that SUCKS with this situation and we generally take for granted...holding our precious little babies.I have not been able to hold Demetri and will not be able to in the near future so I am gonna go hold Isabel like she was a baby all over again even if she is a long a lanky 6 year old string bean, and she is gonna like it. May have to bribe her with a donut or two but I got squeeze her. It'll make me feel good.    

CDH Pregnancy and Then Some

Disclaimer: Some of what is in these journals may not be what others want or need to read, but in the grand scheme, I just hope to get our real CDH story out there.
I am beginning the journal entries in June. The 2 months between our diagnosis and the beginning of these entries was pretty much filled with shock, horrid anguish, shame and everyday life with 3 other kids and husband.

6/3/10- Waiting outside Jas's [Jasmin, my troubled 14yr old step-daughter] counseling appointment. Suggested to be on "liberal" bed rest b/c of my blood pressure but this girl needs to talk to someone and with all we have going on I am afraid to admit we are not the ones to help her at this point. As a matter of fact I feel like some of her acting out, next to her mother's neglect, is rooted in this whole beginning of a nightmare called CDH. Anyway, I am feeling quite lonely.Hector doesn't seem to handle this in the way I do at all. He is just stayin really busy. Which means that he is never around. He doesn't see anything wrong with us and says he is just trying to prepare financially for this birth. I don't see an "us" anymore. We used to be so close. He seems closer to anyone but me. Does he think this is my fault? Historically this would have been the case. A mother would have been seen as the "obvious" cause of anything wrong with her baby.

In addition to this family stuff, I keep trying to figure out who to pray to. Ughh. Never in my life have I questioned faith like today. I keep getting depressed that my prayers are not being answered NOW. Guess as long as baby comes home healthy eventually, our prayers have been answered. But when I read and find out more and more about CDH, I just can't help thinking and feeling the worst. It is making me crazy.Like, what if, what if.What if baby doesn't come home? What if baby has long term disabilities that I can't handle? What if he is so messed up he will not be able to enjoy life? WHY! So with these thoughts comes, major anxiety, hate, hurt, and anger toward everyone around me.

Thank you, thank you GOD for my healthy angel, Isabel. She, at least, brings me the most joy any human could ask for. This situation makes me question, outside of Isabel, everything in life. I am afraid to even speak b/c I feel like anything I even say or believe can be questioned or thrown into a chaotic mess  by some wacky power that feels like messing with me. I feel total uncertainty.Please God, whatever and whoever you are, please give my family peace and health and grant me acceptance.

6/14/10- After one to many anxiety attacks and a trip to the ER, I have decide that I have to really chill. No more screaming matches with Jasmin, no more feeling lonely. For the love of God, I have a baby inside of me kicking away and a 6yr old angel who doesn't leave my side. I am the least lonely woman in the world! I am still very scared. Scared. Fear is like over taking my body. I freak when no one is with me that I may go into labor or something else and no one will be there. This is stopping now! As far as Jasmin's sick and selfish attempts for attention during these times, and others in my life who are driving me insane!, I have to keep reminding myself that I can share my love with the world but do not have the ability to change it.


7/1/10-Relaxing! Baby is almost here!!!! Hard b/c I still feel like Hector is separating himself from this but I do understand somewhere inside that he is just coping the best he can. We are so scared yet just so excited. Lord just please see that we do deserve this baby. Well I do. Please one with the highest of power, see that I am a great woman and a great mother and will stop at nothing to protect and cherish my children. I just keep telling myslef that everything is going to be just fine. But I am not certain and I am scared. I am aslo sticking with the "No Baby Stuff" in the house rule.This must mean that I do not have total faith in this situation. I pray everyday for strength and the healthy of my children. What else can I do.

7/7/10-Just read through previous posts. I am a mess! lol. I can't wait to have more good to write about. I keep thinking even after laughing at myself as I look back, how pee-ed off I am that this is happening to us. There is something wrong with this. I have personally had the unfortunate pleasure of meeting or knowing plenty of child bearing women who absolutely did not deserve or for that matter want the children they have and this is happening to me? Crazy.

Hector is thinking that the CDH will miraculously be gone at the baby's birth. Bottom line is that we are not in each others shoes even though one would think we are. I mean, we are going through the same thing technically but we are living two different lives and I am a mother and he is a father and we just think different. I personally feel like no one feels the way I do and that is wrong b/c it marginalizes Hector and his feelings about all this. He is, I am certain, terrified and just as affected by this as I am.

At this point I will stop. The next chapter in this is "Birth."Boy, this is already quite dramatic for me as I write. I am crying and getting mad all over again. And as you CDH mom's know, or any mom knows for that matter, pregnancy is nothing compared to what is to follow.

And the blogging begins

It has taken me quite some time to get to this point but here I am. Since March of 2010, at our 20 week sonogram when we found that Demetri would be born with a right-sided CDH, I have kept jounals (yes, several of them) but have neglected to share. Throughout this time I have become more and more, less selfish and have now convinced myself of the importance of sharing my thoughts, trials, tribulations and celebrations. So, with Demetri's blessing, I will take some time in the next few weeks to transfer these journal entries into this blog.