37 Weeks: The Plan of Action

We've made it to that magical number: 37 weeks! Though baby is small he is full term and old enough for open heart surgery. Fortunately because of his big growth spurt those last few weeks, they will allow me to go until 39 weeks. So the countdown is on, because baby is coming on May 26 unless he decides he wants to come earlier.

On Monday we met with the heart surgeon, the Swedish neonatologist, and toured Seattle Children's Hopsital and the NICU at Swedish. Unfortunately, it seems we misunderstood the last doctor and our little boy will be swept off to the NICU at birth despite his size though I'm told I may get to hold him a few seconds... He won't be allowed to nurse, leave the NICU, or eat anything for at least 48 hours (or so that's the plan now) even if he is doing really well because there is so much uncertainty about what will happen when his ductus closes.  They will basically do non-stop echograms on him watching and waiting and deliberating the next course of action amongst the various pediatric cardiologists and surgeons that have all been watching this case the last few months.

If baby is still doing ok and the tumor is basically impacting him after birth as it was in utero, once I'm released from the hospital he will be transported to Seattle Children's Cardiac Intensive Care Unit - the place we will call home for the next 4-6 weeks.  They will continue to monitor him and try to prolong heart surgery as long as possible weighing the following risks:

• The younger/smaller he is, the greater the chance of brain damage from the bypass machine.
• The younger/smaller he is, the greater the chance they won't be able to close up his sternum after surgery and so he will need it left open for days or even weeks. 
• The younger/smaller he is, the smaller all the components of the heart are making for a more complicated surgery.
• The longer we wait, his heart will undergo more stress and continue to misshapen (as it showed in the last echogram).
• The longer we wait, the more we will know about the tumor including if it will start to recess which would indicate the possibility that it may go away completely over the course of the next few years and possibly - if recessing quickly enough - keep him from heart surgery. 

As I have gathered it, the most likely scenario seems to be they will operate on him about a week after he is born. After the surgery he will be intubated, sedated and broken for another week and then hopefully we will be able to start holding him and somewhere a few weeks down the line even start nursing him. A lot of things could go better than this and a lot of things could go worse, but that seems to be what we are mapping toward. 

What you can do.

All of the grandparents work but have graciously made time in their schedules to come help with our toddler as we embark on this awful journey. My in-laws from Spokane will be watching our toddler for a week and my mom will watch him for a couple weeks. After that, we figure we will probably both be so over the horrible terrible no good very bad hospital life that it will be a treat to be home and Morgan and I can swap being there and being home. It's going to be a long, exhausting and arduous haul and I know we are going to be lonely, scared and bored out of our minds because we won't even be able to hold or nurse our little one, just sit, touch, and watch those monitors and tubes. At this time, I feel like we will love visitors, at least after the first week or so... and bring snacks if you come. 4-6 weeks of eating out three meals a day is going to get old and expensive. No balloons or flowers though, apparently they want our little CICU room as dreary as possible. Also, please let us know if you live somewhat close to Seattle Children's and have a spare room. The bed in the CICU is a single and nurses and doctors will be checking on him all day and night, so I imagine there will be times both during the day and night when one of us may want to escape for some uninterrupted sleep without having to go all the way back to Bainbridge thus disturbing our toddler. 

Morgan says he is numb to all of this and is just ready for it all to be over whatever the outcome. I'm experiencing a different array of emotions as the time is now so near and so final. I am terrified. I am more afraid of May 26th and beyond than I have ever been of anything in my life. I'm afraid for Kai, for the unfair challenge this is going to be on him. I'm afraid for our baby for the horrible pain and suffering he is going to endure. I'm afraid for us that we will collapse under this physical and emotional trial. I'm afraid for life after it all... whatever that may be. But at least this prologue is almost over.

Chapter 1.