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.
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