Do You Believe In Miracles?

I have been trying to figure out how to open this blog with a clip from the wonderfully vaulting and vamping 1975 Hot Chocolate song "I believe in miracles," but I am just not that technically savvy. However, let me paint that picture with words: Imagine with me now, the hockey announcer from the famous 1980 Olympics in those last few critical seconds of the game, "Do you believe in miracles?"

We've just seen one.

I'll be 35 weeks tomorrow and baby had a major growth spurt in the last two weeks. His little tummy which hadn't grown almost at all in the prior two weeks jumped from the 1st percentile to the 9th percentile and overall he went from the 5th to the 10th and at an estimated 4.5 lbs he has officially outgrown the size requirements for the NICU.  Something miraculous happened.

His size is no longer a concern; this little guy is going to make it! Doctors will still watch him closely but believe he basically outgrew the tumor blockage just enough to allow blood flow to almost return to normal. They expect him to be born at full term and at that point he'll only be in the NICU for a short while to get the echo and MRI done but then the rest of the monitoring should be able to be done at our side until I'm released from the hospital. At that point, we will head over to Seattle Children's to prepare for open heart surgery. At least that's the plan right now - as we have noted, we do seem to go from major highs to major lows and the plan is ever-changing, but we are out of the worst of the weeds of those scary last few weeks.

I went on a super spending spree yesterday. I finally felt like I could buy this kid some things. From the softest of newborn clothes, to a beautiful double stroller I'm readying the nest. Unfortunately, because of the uncertainty of the last few months I haven't prepared my sweet toddler at all for this pending arrival... When I ask him where Baby Brother is he rubs his own tummy... but I have a few weeks and a lot more confidence. His absolute most favorite movie right now is Dumbo, and without even realizing it he has learned the crux of this whole experience: Believe.

"But I be done see about everything, when I see an elephant fly."

I'm so ready for this moment.

via GIPHY


(PS: Look at me!! That! I did that!!)

The Emotional Consequences of Latex Optimism

My heart is heavy today. I keep trying to shake it off but so far not even this extra large mug of home made hot chocolate is helping. Inconceivable.

Over this last week I moved forward with optimism and faith and was completely confident after our big day of fasting and prayer when we evaluated baby on Wednesday everything would point to signs of miracles.

I had faith. I was positive. I was eating consciously and carefully to try and put on as much weight as possible. Everything was going to improve, I just knew it.


So when the doctor told me yesterday his growth has slowed drastically and he is now in the 5th percentile and his little tummy has barely shown any signs of growth at all, I felt a pin prick my balloon of optimism. Then she said I had to start coming in twice a week because now stillbirth is a major concern.

I tried to push away her concerns and justified in my head that this doctor is one of the negative ones. But even my very trusted and calming general practitioner, who discussed the results and prognosis with me after the appointment, felt her concerns and strong recommendation were founded.

Pop. 

It's become a matter of precision timing. The longer he stays in there the greater the chances of stillbirth as he slowly starves. But, we need to keep him in as long as possible to let his heart and brain develop as much as possible to prepare for surgery. The added evaluation will increase our chances of preventing stillbirth through an emergency caesarean in the event he shows additional signs of distress. If I don't go and he were to pass in utero I don't think I could ever forgive myself.

I must have woken up over twenty times last night and couldn't go back to sleep until I felt him move. It's been the first thing I have thought about every morning for the last 14 weeks but now it seems even more imminent. I keep telling myself it is probably for the better if he does pass in utero as it would be painless for him, so long as we have done everything we can. Yet, no amount of self talk will prepare me for the morning I no longer feel him moving, if that morning ever comes.

If. 

Fifty Shades of Doctors

We've seen many doctors in the last few weeks - including a full day at Seattle Children's Hospital where we were given a fresh perspective and second opinion on the situation.

Welcome to Wimbledon, we are the tennis balls. 

Back and forth, up and down, every doctor gave us an emotional whack breaking our trajectory and sending us flying back over the net. I think we are finally broken in - or becoming numb to the situation. Either way we've learned a lot... and mostly that doctors vary widely in their approaches, prognoses, spin and candor. 

Overall, we're feeling a lot more hopeful about the situation. The prayers, good karma vibes, wishes and generously donated meals have been working wonders. Baby grew and within the last four weeks, the tumor did not.  My regular perinatologist is hopeful baby will go full term and if he does come early the regular pediatric cardiologist says they will of course operate no matter how small he is but they should be able to sustain him long enough to let him grow stronger especially if the tumor continues to not grow. For that matter, as the tumor is positioned right now, they think they will at least be able to wait a day or maybe even more after birth before we go to Seattle Children's for the surgery so we should all be able to stay together. 

Just because we like to shake it up a bit we got a remarkably different diagnosis and prognosis from the second opinion team at Seattle Children's. They found what they think is a second tumor in his heart which indicates what we had long ago ruled out: an 80-90% chance this is a chromosomal disease called tuberous sclerosis. This disease can by asymptomatic but most likely (+80%) includes significant issues including seizures because of brain tumors, kidney problems because of tumors, skin lesions and mild to severe mental retardation. The genetic doctor described mild mental retardation as still being able to dress himself as an adult and maybe hold a job at a Pizza Hut; I think I was supposed to take comfort in that statement. I decided if he does have that disease I look forward to proving them wrong. 

The following week we met with our regular pediatric cardiologist who is much older and arguably more experienced. She does not believe he has a second tumor and does not think this is a tuberous sclerosis case. Her diagnosis and prognosis has not changed even in light of Seattle Children's opinion.

We obviously really don't want tuberous sclerosis, and actually struggle with that diagnosis a bit because it's the textbook diagnosis. The most likely scenario (+60%) explaining fetal cardiac tumors is tuberous sclerosis. So we wonder if this doctor who is much younger but obviously extremely intelligent is just banking on research, statistics and probabilities whereas our regular doctor has 30+ years of actually seeing tuberous sclerosis cases and anomalous cardiac tumors. We're kind of hoping they'll just continue to work together and hopefully come to an agreement as they watch the progress of our little one. On the plus side, if the tumor (tumors?) is a rhabdomyoma (the type of tumors associated with TS), it should recess after birth so we may not need surgery at all. Because of this both doctors agree that after he is born (so long as the tumor hasn't changed) we won't put him into immediate surgery but will watch him closely with echograms, MRI's, and additional monitoring to see if the tumor shows signs of quickly recessing and if he has any tumors in his brain as well. 

There is so much to comprehend, and so many decisions to make but one thing we realized this last week was how little we really could do or decide now. Our baby's fate is truly in the hands of God and as our doctor wisely said - "If he passes in utero or on the operating table know that it was probably for the best, because we (the entire doctor team) are doing everything they can and he is going to have the very best care possible." So I'm trying to give our burden of weight and worry to the Lord and rely on prayers and the outpouring of love and comfort from our friends and family. This coming Sunday our entire church congregation will be fasting and praying for our little boy. If you believe in those powers or even just want to believe, we invite you to fast and pray along with us... There is a strength in numbers and a power in prayer and the two combined can and will make miracles happen.