Large volume love :)

Thou seemest, Lord, to give severe tests to those who love Thee,

but only that in the extremity of their trials

they may learn the greater extremity of Thy love.

-Saint Teresa of Avila

These last few weeks have been a test and a testament of our faith and love for one another and for our Lord. Having a baby is tough on a marriage. Having a sick baby 8 months after you get married is very tough on a marriage. :) Tony and I have faced challenges that couples who have been together for years struggle through, and we have also faced challenges that some couples never have to go through. As new parents we don't always know why Brynn is crying or what we can do to make her feel better. Typical conversations go something like this:

"Why is she crying?"

"I don't know...did you change her? feed her? rock her? give her her meds? check her stats? swaddle her? bathe her? play with her? walk around with her?"

"YES! And she is STILL crying."

"What if something is really wrong? Should we call the doctor?"

"I don't know. What do you think?"

"I don' know. What do YOU think?" And so on.

A few times her crying is so frantic and loud it drives stress levels through the roof and leaves a ringing in you ears. Late at night when you are both exhausted it is not only frustrating but also scary. You always want to be kind and patient with one another but nothing takes away your appreciation and gratitude for your partner quicker than a screaming baby. Deep breaths, prayer, and tag teaming (when possible) are saving graces and less messy than killing each other.

So far we have been so lucky that we haven't had any real scares with Brynn's health and have managed to support one another and use our resources when faced with questions or challenges. Two weeks ago Brynn had three large spit-ups in one day ("large volume emesis" in the medical world). Usually, she tolerates her feeds very well and keeps down her meds without an issue. For some reason though she not only threw-up frequently that day but she also threw-up a lot. I called the doctor who advised us to check Brynn's stats and continue to monitor her closely. She told us that if her stats were under 80 or she had another large spit-up we would have to page her and maybe come in. Her stats sat solidly at 85 but an hour after I hung up the phone (around 11:00pm) she threw-up again. I was really torn. I know that "spitting up" is not just spitting up when it comes to our kid. She has to gain weight. She has to keep her meds down. Any and all illness or change in typical behavior should be considered cardiac related until proven otherwise.

But I also have to rely on my instincts as a mother and as Brynn's primary caregiver. Her stats were fine. Her color was good. She wasn't fussy. She didn't have a fever. I really really didn't want to spend the night in the hospital and subject my kid to IV's and blood work for just a little spit-up. But I also knew that I would never forgive myself if it turned out to be something more and I didn't do the right thing. So, I had the doctor paged and waited by the phone. Strangely enough though we never heard back from the doctor and the three of us ended up passing out for the night as we waited for a return call.

The next morning Brynn's weight hadn't changed (pretty amazing considering how much she spit-up) and her stats were still solid. She tolerated her meds and didn't have another large emesis episode that day. I felt guilty that I felt relieved that the doctor never called back but I also felt more confident that I would know what to look for in the future if something was really wrong. Everything about this journey is a learning experience.

Since then, Brynn has been much better taking full feeds every two hours during the day (with longer intervals at night, thank God) and keeping everything down. She is gaining weight at the rate of about 45 grams a day and keeping down her meds. At our last cardiology appointment she had an echo that showed normal heart function and excellent stats. The cardiologist added an additional medication to help Brynn's heart not to have to work so hard. She consulted with the surgeon and decided to postpone Brynn's second surgery by a few weeks. Since Brynn's stats have been sitting in the mid-80's it is showing that she has not yet grown out of the shunt. This will allow Brynn to gain more weight and get a little stronger before going back for the second procedure.

I can't begin to explain how relieved I am that we have a little more time with our baby boo before having to go back to the hospital. I know that Brynn needs the second procedure to save her life and keep her healthy but I am having a very difficult time accepting the fact that we will have to go back and see her once again so sick and helpless. She has made so much progress and is such an amazing little baby. The thought that something might go wrong, that she will be in pain, and that we will be separated from her makes ME feel like I'm about to have some "large volume emesis". I'm really trying to use all the prayer, faith, and hopefulness that got me through her birth and the first procedure. In some ways it might be easier now that we know what to expect. But in some ways I know it will be infinitely harder now that we have met her, loved her, taken her home and cared for her. She is our baby.

We go in on November 18th for her cath and will stay overnight. Our surgery date has not yet been rescheduled but will most likely take place the week of Thanksgiving. In the meantime we continue to enjoy every moment (well, maybe not the inconsolable screaming baby moments) of our time together as a family. Knowing how precious a gift we have been given in her makes the more difficult moments more tolerable and the adorable moments that much more joyful. Enjoy the pics and the video of Brynn's tummy time! She is becoming much more vocal and interactive!