I don't know where to begin. At most, I've slept maybe an hour or two out of the past 48. Those who follow on Facebook or Twitter know that we've had an impossibly long night: from cath lab to emergency surgery that for a time had us wondering if Ewan would see the morning. The long and the short of it is: we were preparing to say goodbye.
We knew an emergency surgery situation is already at a greatly elevated risk. The head surgeon said these are the smallest arteries he's ever seen that he dared to operate on. In other words: Ewan's case is as extreme as it gets.
First shunt didn't work. Second didn't work. If the third didn't work, there was no backup. Lots of bleeding. Low O2 levels. Even the most optimistic doctor saying things aren't looking good. Family called. Chaplain called.
Waiting, waiting, waiting.
We made it through the night, but we've still got a really long, long way to go. Questions remain about the reason for fluid accumulation in the belly, about possible brain damage from the lowered oxygen levels. ECMO -- the scary thing that I dreaded being necessary -- is keeping our son alive right now. Our Ewan continues to fight, but he still needs our help.
Please continue to pray for Ewan, and for all of us. I trust your prayers guided the hands of the surgeons and kept them awake for the long fight they had tonight. I trust your prayers gave me an unimaginable peace and trust in the hand of God in all of this.
Add him to your prayer chains. Pray for him at your Masses. Storm the gates of heaven with your prayers.
We still need to be realistic about this, but I am not a deist! I trust in a God who can move mountains -- the God of the impossible. One of the doctors said at this point, a full recovery would take "a lot of luck." I think we can do better than that. How about a miracle? I'm ready for one if you are.
Showing posts with label NICU. Show all posts
Showing posts with label NICU. Show all posts
24 September 2010
23 September 2010
The day before the BIG day (we think)
Note: You can click on any of the photos below to view a larger image.
Today was a full day, carrying within it an extraordinary range of emotion and a lot of information, so I hope you don't mind if I keep it somewhat brief ... we're so exhausted, and tomorrow is going to be a big day not only emotionally, but for our own preparation for Ewan's medical care, so we definitely need our rest.
Shortly after we arrived at Ewan's room at the NICU, I got to hold that sweet baby again. He was just on the canula for breathing support and was free of the CPAP which I know he absolutely hated. I held him for an hour and a half -- maybe more and I think we both enjoyed it. Some of the meds they're giving him can make him a bit cranky (and we also learned that he is a boy who does not like to be wet), but I kicked into fulll mama mode: rocking, shushing, stroking his hair, rubbing his hand, kissing his sweet head. I could have done that all day.
For the most part, he stayed calm. And when he wasn't, I loved on him all the more.
Later in the afternoon, we met with the doctor who will be performing the cath lab procedure that is currently scheduled for tomorrow. He sat down with us for about an hour or so to explain to us the procedure, its importance, and what they're looking for. When we pulled out our notebook, he said he would write everything down he was explaining and then give it to us.
We went over the basics of Tetralogy of Fallot -- he explained the variations within ToF with Pulmonary Atresia, and within that all the different types of possibilities for what they could see, some far more severe than others. I'm not going to go into the technical details here, but with Ewan's specific make up, there appear to be a few possibilities, one definitely more desirable than the others -- each with varying possible outcomes. This catheter procedure is really the only way to tell.
As he explained it, the cath lab procedure is all about building a road map of Ewan's heart. What they see tomorrow will tell them where they need to go and what they need to do. Tomorrow's procedure will give a team of twenty or so pediatric cardiologists and surgeons who will use that information to discuss Ewan's specific case on Friday or Monday, and together determine an appropriate course of action.
We really appreciated how incredibly straightforward and understanding this doctor was with us -- we know this can't be an easy part of his job to talk to parents as honestly as he did about some of the possible grim outcomes of their children's conditions. He didn't pull any punches, and made it clear that he would meet with us immediately after the procedure was completed. He also said they as doctors don't perform any procedure on a child that they wouldn't be willing to perform on their own children -- and if that there was a hospital or a doctor that could do it better, that's where Ewan would go.
Some other information about the cath lab: Ewan will be sedated while the catheter procedure is done. It is expected that it will take about two hours, and the doctor will meet with us immediately after. But it is only after the team of pediatric cardiologists and surgeons meet that we will know what kind of surgery we can expect for Ewan, and roughly when it needs to happen.
It was very hard on my heart to hear all this. I look at that sweet, adorable baby and wonder how in the world something could be so wrong with him. I want to use my mama magic to make it all go away -- instead I have to trust his care to others, hand him over for things that irritate him, leave him at night when all I want to do is cuddle up beside him. His broken heart is at the center of mine.
Before we left, I asked James to baptize him. The risk of tomorrow's procedure causing death is very minuscule (0.03%), but I didn't want to get to the point where Ewan was going in for something big and we hadn't done that yet. It's definitely a comfort.
As I said: tomorrow is a big day. Please pray for us. If that's not your particular bent, happy thoughts, good vibes, and well wishes all accepted as well. It must be said: your prayers are truly carrying us. This is such a poignant and emotional experience -- I gave birth less than a week ago, and it will be some time before I'm recovered from that physically. We're both incredibly sleep deprived. We have a baby in the NICU. This is our first time doing any of it, and there isn't any road map for us as to how. Your prayers are carrying us along -- I know myself well enough that we aren't making it by our own strength. Not by any stretch.
In short, we (all three of us) need you.
The papa bear needs you.
The baby bear needs you.
The mama needs you.
Lord, have mercy on us all.
* * * * *
Today was a full day, carrying within it an extraordinary range of emotion and a lot of information, so I hope you don't mind if I keep it somewhat brief ... we're so exhausted, and tomorrow is going to be a big day not only emotionally, but for our own preparation for Ewan's medical care, so we definitely need our rest.
Shortly after we arrived at Ewan's room at the NICU, I got to hold that sweet baby again. He was just on the canula for breathing support and was free of the CPAP which I know he absolutely hated. I held him for an hour and a half -- maybe more and I think we both enjoyed it. Some of the meds they're giving him can make him a bit cranky (and we also learned that he is a boy who does not like to be wet), but I kicked into fulll mama mode: rocking, shushing, stroking his hair, rubbing his hand, kissing his sweet head. I could have done that all day.
For the most part, he stayed calm. And when he wasn't, I loved on him all the more.
Later in the afternoon, we met with the doctor who will be performing the cath lab procedure that is currently scheduled for tomorrow. He sat down with us for about an hour or so to explain to us the procedure, its importance, and what they're looking for. When we pulled out our notebook, he said he would write everything down he was explaining and then give it to us.
We went over the basics of Tetralogy of Fallot -- he explained the variations within ToF with Pulmonary Atresia, and within that all the different types of possibilities for what they could see, some far more severe than others. I'm not going to go into the technical details here, but with Ewan's specific make up, there appear to be a few possibilities, one definitely more desirable than the others -- each with varying possible outcomes. This catheter procedure is really the only way to tell.
As he explained it, the cath lab procedure is all about building a road map of Ewan's heart. What they see tomorrow will tell them where they need to go and what they need to do. Tomorrow's procedure will give a team of twenty or so pediatric cardiologists and surgeons who will use that information to discuss Ewan's specific case on Friday or Monday, and together determine an appropriate course of action.
We really appreciated how incredibly straightforward and understanding this doctor was with us -- we know this can't be an easy part of his job to talk to parents as honestly as he did about some of the possible grim outcomes of their children's conditions. He didn't pull any punches, and made it clear that he would meet with us immediately after the procedure was completed. He also said they as doctors don't perform any procedure on a child that they wouldn't be willing to perform on their own children -- and if that there was a hospital or a doctor that could do it better, that's where Ewan would go.
Some other information about the cath lab: Ewan will be sedated while the catheter procedure is done. It is expected that it will take about two hours, and the doctor will meet with us immediately after. But it is only after the team of pediatric cardiologists and surgeons meet that we will know what kind of surgery we can expect for Ewan, and roughly when it needs to happen.
It was very hard on my heart to hear all this. I look at that sweet, adorable baby and wonder how in the world something could be so wrong with him. I want to use my mama magic to make it all go away -- instead I have to trust his care to others, hand him over for things that irritate him, leave him at night when all I want to do is cuddle up beside him. His broken heart is at the center of mine.
Before we left, I asked James to baptize him. The risk of tomorrow's procedure causing death is very minuscule (0.03%), but I didn't want to get to the point where Ewan was going in for something big and we hadn't done that yet. It's definitely a comfort.
As I said: tomorrow is a big day. Please pray for us. If that's not your particular bent, happy thoughts, good vibes, and well wishes all accepted as well. It must be said: your prayers are truly carrying us. This is such a poignant and emotional experience -- I gave birth less than a week ago, and it will be some time before I'm recovered from that physically. We're both incredibly sleep deprived. We have a baby in the NICU. This is our first time doing any of it, and there isn't any road map for us as to how. Your prayers are carrying us along -- I know myself well enough that we aren't making it by our own strength. Not by any stretch.
In short, we (all three of us) need you.
The papa bear needs you.
The baby bear needs you.
The mama needs you.
Lord, have mercy on us all.
22 September 2010
There is more than one broken heart in this room
Today wasn't even that bad. Ewan wasn't in any distress or any danger. When I arrived at the NICU, there was a lot of activity. Baby Ewan was calm and alert at first, and it was wonderful to see him without the breathing tube. One of the cardiologists was finishing up an evaluation, and they had started to do another echo to see the effects of weaning Ewan off the prostaglandin.
 |
| A happy, morphine-free Ewan when I first arrived today |
 |
| Ewan has another echo -- you can click on the picture to see it better, but he's holding on to the tech's ring and pinkie fingers as she scans him |
Ewan didn't like it at all.
 |
| One angry boy :: he didn't really like getting the CPAP put on |
You could tell the poor little guy was stressed out. I didn't count, but I think at one point there had to be at least eight people in that little NICU room. So many people were messing with him and he was clearly angry. And so I sat there and watched as other people were helping my baby and he tried to scream or cry, but sounded wet and raspy. And I couldn't do anything: couldn't really comfort him, couldn't hold him, couldn't do anything but watch.
Rip. My. Heart. Out.
Mama fell into tears more than once. And again when she came home.
I wanted to see about holding him, but because of his blood gases, it couldn't happen today. So I stood by his crib, and sang to him one of the songs I made up during my pregnancy. Baby Ewan, how you doin'? ... I invited his little fingers to wrap themselves around mine. He looked at me, held my gaze. I looked into the eyes I hadn't seen since the day he was born. I made sure I was close enough that he could look into mine. I rubbed his little hand, touched his chest, stroked his hair. I wanted to hold him even more.
And after tomorrow's Cath Lab test, it will be a long time before I'll be able to hold him again. In the Cath Lab, they will inject some dye into Ewan's body and get a closer look at his anatomy to know exactly what they're dealing with. This test will tell them a lot more about the course of treatment that will be best for him.
Either way, we will be holding our breath a bit tomorrow, wondering and waiting.
 |
| A calmer, quieter Ewan |
When I left, he was so peaceful. He was sleeping deeply, breathing steadily, sighing sweet baby breaths. The nurse invited me to kiss him goodbye (Wait ... I can do that?!) and I did. I kissed his sweet head a few times, told him how much I loved him, and then cried again as I left. Cried on the way home. Cried in the parking lot at Target when I found myself rubbing my belly and singing to the baby who wasn't with me anymore. Cried on James' shoulder when I got home (he couldn't go with me today because he felt like he had a sinus infection). Cried and cried, just because. Cried because everything and nothing was wrong.
 |
| If I have to leave him, it's good to do it like this: sleeping peacefully, no distress. Sweet, dreamy baby breath. |
I just want what any new mom wants: to pick up my baby and hold him, to be able to do that without needing a nurse's help or a doctor's permission. I am definitely hopeful that we will get that someday -- but for now, I think I'll cry a little again and look at some more pictures of his sweet face.
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