I am re-posting Jen’s most recent blog post on here. Please take a moment to read it and say some prayers for miss Abby.
Abby is perfecting this incredible knack for throwing a monkey wrench in my plans. She continues to teach me that I am SO not the one in control around here. So on the days that she whacks me on the head with that reality, I turn immediately to prayer. Today is one of those days…
I can’t tell you how much the words, “We are praying for you” got us through the first leg of this journey. And when people would ask me, “Do you guys need anything?” or “Can we do anything for you?” my answer was KEEP PRAYING. God is in charge and he needs to hear our voices. Even when things started to get really good, I still kept saying, “Please keep praying – this journey isn’t over.”
Well folks, the reality that this journey really isn’t over is upon us. We’ve hit another bump in the road. The NICU Nurses told us when they were getting ready to send us home that we would be fighting the good fight for Abigail for the next several YEARS.If I’m honest (which I try to be) I didn’t believe them. This is Abigail we are talking about here… Nothing can harm her, she was specially made by God Himself. It is so hard to really wrap our heads around the reality that it will be years before we truly know if Abigail will be a typical child when she is doing so well. She is still setting the bar and surpassing expectations. But, as it was in the NICU, there are good days and bad days. And there will always be an obstacle ahead of us, no matter how good things get. One of the biggest fears any of us have is Abigail getting sick. Anything from something small, like a cold, to something big, like a virus, has the potential to set us back, both developmentally and in growth. Any infant (not just preemies) who gets sick can have multiple problems occur due to that illness, but babies like Abby are even more at risk. And for micro-preemies, it could have a serious effect on the end result once she is “all caught up.”
Well, leave it to Abigail to go big. RSV (Respiratory Syncytial Virus) is certainly a biggie! It’s the one that EVERYONE of her caregivers has warned us about. All infants get monthly vaccines from the months of November to March to guard against it. According to good ol’ Wiki, RSV “is a virus that causes respiratory tract infections. It is the major cause of lower respiratory tract infection and hospital visits during infancy and childhood. There is no vaccine. Treatment is limited to supportive care, including oxygen.” Grrrrrrrrrrrreeeeeeeeaaaaaaaaat… (can you just see my look of disdain?)
Yesterday, Abby was fine. A little cranky, but no other symptoms. Then, last night, she started wheezing and coughing a little. Throughout the night, both got progressively worse. (Side note: A testament to how well she sleeps is that even with wheezing and major coughing, she still slept through the night. Not fazed at all). I called Dr. S this morning and waited for a call back. Abby slept most of the morning and didn’t really want to eat a lot, which is a BIG change. I went to work, still waiting for the call back, and my Mom took over her care. My Mom called me just before 2pm to say that I needed to take her in, no questions. Something was wrong and we needed to be proactive. She was only getting worse. So I called again and made an appointment for the morning. At about 3pm, one of Dr. S’s nurses (our favorite, Leddy) called to talk to me about Abby and what was going on. I told her we were coming in tomorrow morning, but the second I said the word “wheezing” she said no way – I needed to come in today and she and Dr. S would wait for us. So Anthony picked Abby up after work and I met them there.
Dr. Saul took one look at her and looked worried. He said straight away, due to her symptoms and what I was telling him, that he thought she might have RSV, but we needed to be sure. So Leddy comes back in to do the swab. Now, I know how much I hate it when they swab my throat to test for strep. I hate the way it feels and how uncomfortable it is and how much it grosses me out. How about you? Yea… I’m sure you hate it, too. Well this swab is the same idea, only a gag reflex on a baby won’t allow for a throat culture, orally. So, they have to swab the back of the throat via her nasal canal. Yup… you read that right. They had to stick that cue-tip thing UP HER NOSE and wiggle it around to get the culture. Poor baby! She was just miserable. She screamed bloody murder and it took Anthony a good 15 minutes to calm her back down. By the time we got her back to “normal” crankiness, the results were in. And it was confirmed… RSV. Booo.
Dr. S looked sad. I could tell he hated giving us that news. Especially because there is nothing we can do. It’s a virus. There is no real treatment. No meds, no shots, no nothing… just wait and see. I said, “So where do we go from here?” And he says, “We watch and wait. And if she stays the same, she will get better in about 7 – 10 days. And if she gets worse, we will have to re-admit to Los Robles for breathing treatments and observation.” And even then, Dr. S says that the breathing treatments don’t actually help her get better, they just help comfort her. Grrrrr.
The next week and a half are going to be rough. The toughest we’ve had since we left the NICU. So, we are on lock-down. There will be almost no exceptions to the “No Visitors” rule and we are back to the rules we came home with. Other than work, Anthony and I are canceling all of our plans and pretty much staying here to make sure Abby gets better and not worse. And my parents, who care for her while we are both at work, are on red alert! (Bless them!)
This is one of those times that I was talking about – the one where we aren’t NICU people anymore, but we still need prayers. Abby needs prayers for health and strength. Anthony and I need prayers for patience, strength, wisdom, and maybe a prayer or two for restful sleep. We need prayers that this will have minimal effect on Abby’s growth and development. And we all need prayers to stay far, far away from Los Robles (No offense, you know we love you all! But I don’t want to go back!) The Power of Prayer helped us get through the first steps of this journey and it will help us now. And I can almost guarantee that it won’t be the last time I ask for them.
Thank you to everyone for all of your support. I will hopefully post that “first blog of the year” I’ve been working on soon. And in the meantime, I’ll do my best to keep you all posted on how we are doing here with this virus.
Stay healthy, everyone!