Sunday, May 16, 2010

The roller coaster continues...

The past few days have been overwhelming with activity. We haven't updated out of sheer exhaustion, but we figure that if we don't update today, we won't ever remember everything that happened. It's already all a blur; we will try to recap everything.

The night after our last post, we were called in the middle of the night to be told that Charlie had needed a chest tube put in emergently. The pressure from his left pleural effusion caused too much stress on his heart, and his stats dropped drastically, almost to the point of requiring CPR. They were able to re-stabilize him with the chest tube, which put out about 300cc of fluid just in the morning alone. To put in in perspective, a soda can has 355cc of fluid. All of that had been building up in his left lung. We were told that while the left lung was improving, the right lung was beginning to look hazy. We were warned that a right chest tube would probably need to placed.

Friday early morning, we got another phone call. This time, they told us he had an unexplained hypotensive event. We were told they were getting concerned about his body brewing some sort of infectious process, but they weren't sure what. Antibiotics and antifungals were started, and they closed his abdomen in order to hopefully prevent any further infection. We continued on our 'wait and see' course.

Saturday, we realized Noah had been breathing fast, and since he has spent every day of his life at the hospital, we took him to the pediatrician. After a full examination and some discussion, we are pretty sure Noah is suffering from reflux - at times, he's had breastmilk come out of his nose, and probably does not help his congestion. We then left to visit Charlie again. We came in and a chest tube was placed on the right side. Our sweet boy looked the exact opposite from those early post op pictures. He was so thin, you could see the little bones in his hands. The sutures from his skull were visible, and his fontanel was sunken. For the first time, Charlie looked absolutely sick. The nurse explained that they had worked so hard to get him to diurese, that once the chest tubes started dumping fluid, he dried out too much. They were replacing his fluids with albumin once again. We noticed that his left pupil was larger than his right at times., and became concerned about his neurological status. The nurse agreed with us and told us she had been concerned too. We spoke to the fellow, who told us that she'd speak to the attending about getting a neuro consult. We left the hospital at about 8pm to go home for the night.

At about 10:45pm, we got the worst phone call a parent could possibly get. Charlie's heart had stopped beating at about 10pm, and they had been doing CPR for 45 minutes. They were getting ready to place him on ECMO, which is a bypass machine. We rushed to the hospital, and they were still doing the procedure. We called our families to be by our side, and they came to us immediately. The physicians told us they were unsure of what precipitated the event. The only clue they had was that Charlie suddenly dumped a large amount of fluid from his left lung, and shortly thereafter crashed. He had been down for a total of one hour. Dr. Berger stated that he believed Charlie was showing good neurological signs, such as shivering while being placed on ECMO.

We stayed at the hospital until about 3am. It was terrifying seeing our pumpkin after the procedure. He was bruised from the CPR. He was oozing quite a bit from his chest. The machine itself is something that looks like it belongs in a sci-fi movie. Our hearts broke that it had come to this. We left the hospital and spent the night at Mina's sister's house as to be surrounded by family for a little bit longer. This morning, we returned to his side, family and all. We were told he was doing pretty well, considering. His heart was beating on its own, although the ECMO machine was doing the job of actually circulating. His pressure was holding steady. His brain ultrasound showed no signs of bleeding (patients on ECMO need to be placed on a blood thinner, hence they have an increased risk of bleeding). We are now back to the waiting phase. Dr. Berger told us that Charlie will be on ECMO for a few days.

It is hard to not wonder if we are pushing Charlie beyond what he can handle. He looks like his in pain at times, and it breaks our hearts to see him so beaten and hurting. We are putting our trust in the medical team, who seems to have hope that he has a chance. We want so badly to be able to bring our baby boy home, but that's not up to us. We know that ECMO is his last chance to recover - if he does not recover from this, it will be time to let him go. We pray that whatever the outcome may be, that he doesn't suffer any more, and that we can be strong enough for him and for Noah.

So this roller coaster ride seems never ending - has it really only been three weeks since these boys were born? We can't believe all we have been through in such a short amount of time. The support from family and friends continues to be incredible - even if we are unable to tell each person individually how much it all means to us, every little message saying we're on your mind, and every status update on Facebook that states "pray for Charlie" warms us and reminds us that we are not alone in this fight - Charlie is not alone in this fight.

Since the boys can't be together anymore, we got them each a little plush sheep to keep by their sides. Here they are:

Charlie today on ECMO

Noah napping

We are expecting the next day or two to continue to be 'wait and see'. However, Charlie has shown us time and time again that he has his own plans. We will update whenever we can. Thank you all for everything.

Lots and lots of love,
Josh and Mina


  1. We love you all! Praying hard for Charlie tonight.

  2. I hate going down on the roller coaster, but I guess it wouldn't be as sweet when you finally go up. I am sorry you had an unexpected turn of events. That is wonderful his heart is beating on its own. He is a fighter! Keep us updated!

  3. oh guys! my heart just breaks for you!! i love you and those boys (even though i've never met them yet!). charlie is always in my prayers and i think of you guys everyday!

  4. my heart is heavy for you, yet hopeful. i eagerly await each update from your family!!
    i share my favorite prayer from st. francis of assisi:

    Lord, make me an instrument of your peace.
    Where there is hatred, let me sow love;
    where there is injury,pardon;
    where there is doubt, faith;
    where there is despair, hope;
    where there is darkness, light;
    and where there is sadness, joy.
    O Divine Master, grant that I may not so much seek
    to be consoled as to console;
    to be understood as to understand;
    to be loved as to love.
    For it is in giving that we receive;
    it is in pardoning that we are pardoned;
    and it is in dying that we are born to eternal life. Amen

    charlie is a fighter, and this excites me :) fighters are the best kind of NICU babies!
    it is so beautiful to see what love surrounds your family right now... stay strong!
    lauren pauls

  5. You all have been heavy on my heart all weekend, especially tonight. I am so sorry that your family is experiencing this roller coaster. I was so hoping you would be walking an easier path with HLHS. Charlie & your whole family remain in our prayers and dear to our hearts. We are here for you whenever, for whatever, no matter what. Charlie & Noah are both truly fortunate to be yours.

    Much Love,
    Patience & Jordan

  6. A friend of mine on FB posted a prayer request and posted this link. I am sorry to see your family suffering like this. My prayers are being sent!!!

  7. I am so sorry you are having such a rough, difficult journey. I know it must be heartbreaking to see Charlie so poorly. Please know that we are thinking of you all the time, and keeping you in our prayers. Trusting that little Charlie will start to pick up soon after a few days resting on ECMO. With our love to you and both your precious boys. xxx