Watching baby Ruby with the three other kids makes it easy to see that they are not strangers meeting for the first time. Her eyes, always searching for the face of one of her siblings, and her humungous smile when she finds their eyes tells me that they are simply reacquainting here on Earth. We have been missing her, and we didn’t even know it until she got here. The blessing she has been to our hearts in giving us all more ability to love and more chances to show it cannot be expressed in a blog post, but its powerful and its very real to all of us.
So on her 4 month check up (a week after a CF clinic visit) with her pediatrician in late October concern was growing that she was getting sick. She was able to keep it together until the week after when she seemed to be slipping further and further towards another hospital stay. I, who already feel like I have been running on the lowest of household and motherly basic maintenance modes, was a wreck (sorry I forgot to sign your homework sheets so many times my bigs). All focus was on Ruby and her feeds and how to work through them and the coughing and the eventual vomiting induced by the coughing. The same pattern that landed her in the hospital in July was unfolding before my eyes and I didn’t know how to stop the train and felt helpless as I would be so so so so careful as I fed her and then again a coughing spasm would lose the work she and I had done over the past hour as she would cough, choke and vomit 6 times a day. We were a mess. I was sure we would be in the hospital again. The ironic part was that when she got sick last time she was in the hospital on the Sunday she was supposed to get her baby blessing in sacrament meeting at church, and she was getting bad again right before we were planning on blessing her again (Nov 1st).
Lots of prayers were in our hearts. I needed to know what to do and I needed to know how to help her best. A not so irrational fear I carry is not taking a sick kid to the hospital soon enough and regretting it for the rest of my life. So I was into my pediatrician often. 4 times in 7 days, it would have been more but there was a weekend in the middle. But I kept in close contact with my CF team and had a well trained and prepared pediatrician who helped us through. In this instance, we slowly and so thankfully saw Ruby improve and come out of the hospital danger zone.
What I am ecstatic to see now is the chain of learning experiences that happened during our 1st hospital stay that made it possible to avoid this one.
First, my encounter with the large looming respiratory therapist one night in Ruby’s hospital room in July in which he told me of a fellow respiratory therapist on his team that purchased a hospital grade suction machine (on Amazon of course) when his baby got sick to clear out the snot and avoid a potential hospital stay triggered our research, attempted insurance involvement and approval, and eventual purchase of our own code cart grade portable suction machine. Or as it has lovingly been named in our home, the Snot Vacuum.
Second, what I had learned about Ruby and how she responded with her feedings and how to hold her and burp her to maximize her ability to not cough during the feeds gave me the specified experience I needed to help my baby this time even better.
Third, I saw that even though I full well knew I was a mess I had to control my temper, irritation, and anxiety because the second I did not the Holy Ghost (light and spirit of Christ) was not able to direct me, or more accurately I was not able to hear it and I needed to be able to hear it to know the step by step of what Ruby needed and when she needed it. Example : Suction her now, stop feeding her the bottle and take a break, use the percussor on her back now, etc, etc. The more I was able to feel calm enough to pray, silently most often, and control my emotions with my other beautiful and slightly neglected at the time but still loved (and fed and bathed I assure you) children and husband the better I was able to handle helping Ruby and allowing Heavenly Father to help me help her through it.
The point is, the mess was blessed. It is still a mess, but a continuously blessed one. As one of my favorite country songs says, a beautiful mess.
Now for some really exciting news, and a big fat ripple effect of Ruby’s hospital stay in July was that it gave the proof positive for insurance that although she is small she could benefit from a chest percussion therapy vest. So with the help of a dedicated and exceptionally awesome CF clinic team Ruby now officially has her own shaker vest. She will still start on 35% (while the other two CF vesters in the family can tolerate 80% and 100% power), but she has her own!
These experiences show me like countless others in the past have that God blesses us amidst our trials. We walk through disappointment and trials but we do not walk alone, and we are being led to a better place.