These are the words of a wise woman named Carol whom we met today while holding onto our two day old baby. 

In our short time (so far) here, we have watched families fight battles no families should fight – let alone tiny babies from all around the world. There are 25 beds in the CICU. They are so full nurses from the NICU have to come upstairs to help the CICU nurses. 

And nestled in a corner bassinet lays a tiny (and growing smaller by the day) baby.  He is mostly oblivious to all the bells, beeps, whistles, cries, coughs, voices, and constant noises around him.  He doesn’t have much of an appetite. He nursed some yesterday to imbed upon his little brain the concept of feeding. He seems happiest “nursing” his pacifier with a drop or two of sucrose here and there. He lies quietly until he is wet or dirty. Then he cries a gentle wail to let someone know he’s uncomfortable. Then goes back to laying quietly.

Until someone who has counted the days until they could meet him pick him up (but only with help thanks to the medical equipment his life relies on).

And yes, that baby is our Marshall. 

On the day he was born, while I was trapped in recovery (a long, somewhat funny story I’ll relay in another post) he patiently cooperated for a 3 hour long echocardiogram performed by Dr. F. His dad sat with him. I couldn’t be there but wished I was.

The consult followed the next day with all three of us.

Truthfully between the exhaustion, pain meds, and baby love (I had waited soooo long to hold Marshall in my arms), I can’t remember a word Dr F said. I remember the tears I couldn’t stop as he explained the procedures that Marshall will need as I looked down at this beautiful baby boy asleep in my arms with a time bomb inside of his chest.

Marshall’s diagnosis is nearly the same as what the docs had found during the fetal echocardiograms with a couple of small changes. And we know no more or less than we did. The answers we’re still waiting for which were promised “after he’s born” still haven’t arrived. He’s born. He’s two and a half days old.

And two days of dancing around these unknowns was all it took before I broke down. Nurse Practitioner K sat with me as I cried holding our tiny baby in my arms after his respirations were for lack of a better description “weird” all day. She explained it’s the combination of a small left ventricle, pulmonary atresia, total anomalous pulmonary venous return and whatever else they haven’t figured out.

A PIC line was placed today after they “turned him into hamburger” (direct quote) before his dad’s eyes on the afternoon he was born as they fished for a vein to start his IV. And the catheterization he’ll have Monday we had to give consent for. And whatever looms in the not so distant future.

We just don’t know. And we won’t until we get there.

And if it wasn’t for the absolutely incredible staff here at Brigham Women’s, Boston Children’s, and back home, Marshall may not be here.

So we’re going to follow Carol’s advice.

And be thankful for the time we have. All four wild boys were together today thanks to some folks willing to seriously break visiting rules.

That was priceless time.
We won’t ever forget how incredible those moments were. Or how grateful we are for the people who facilitated them.

We’ll give Time all the time Time needs.

And in the meantime, I’m going to keep my hands busy with holding a sweet little baby every chance I get.