Well, the last 36 hours have been terrible. I am not even going to sugar coat it. The last two days, Layla has been sounding like she has a cold—she coughs up a lot of mucus, which is a side effect of the acid reflux. The acid reflux causes a lot of mucus build up, and because she has been throwing up a lot, she has an aversion to swallowing, which causes her to choke on her mucus. Yesterday, after I had posted about the previous day, Layla was having trouble coughing up the mucus, which led her to aspirate/suffocate. As I was holding her, she started turning blue and couldn’t breathe. Luckily her alarms were going off, so the nurses came in and suctioned her out and she started breathing. It all happened so fast that I didn’t have time to panic. Or maybe I’m just not the panicky type. So that was a hard event.
That night, she had another episode (no so much of the blue part), so they had to bring in the nurse practitioner in to assess her, who said that they’d watch her over night and would call us for anything. I said a quick prayer after that, not because I didn’t want to be woken up from a blissful sleep, but because I didn’t want to be woken up from a blissful sleep because my baby wasn’t doing well.
At about 4:45 this morning, my phone started buzzing. I thought it was my alarm for me to pump (I know, TMI [too much information]…). I realized that it was someone calling me. I answered the phone because the area code was Portland, and no one other than the hospital would be calling me that early in the morning. I quickly answered the phone, and it was the nurse practitioner. She had called to say that Layla had a fever and had been throwing up a lot since I had left that night. They also said that she had an x-ray and could possibly have re-herniated, have pneumonia, or fluid in her lungs from throwing up. Neat. She was put on a c-pap machine that makes her look like she is mummified or that she just had plastic surgery. We’re trying to look at the bright side of things. Oh, and she’s back in her little girl bed.
Since then, we have talked to the surgeons again, the doctor, tons of nurses, and everyone else that we could possibly ever talk ever. We’re waiting to have an ultrasound to see what’s going on. I’ll post more later.
Kelsey and Layla sleeping:
This is later.
She has re-herniated a little. So the surgeons and doctors and radiologist are going to chat tomorrow morning, look at the ultrasound, and see if they need to operate now or later. Because of it being a small herniation, they are concerned that it might block blood flow.
Can I rant a little? Actually, I’m going to. This is my blog and I get to do what I want. This is really hard. Anyone who gets to take their baby home right away really sucks right now. Which I guess is basically everyone because NICU experiences are far and few in between. Anyone who ever complains about not getting any sleep because their newborn is keeping them up, I will have no problem calling you out because at least YOU get to have YOUR baby home. At least YOU don’t have to spend who knows how long in an unfamiliar place, without your baby, not sure if your baby is actually going to make it out alive. THAT REALLY SUCKS.
Anyway, that’s it. I’m going to go get myself an extra large ice cream cone and eat it until my tummy hurts, and then eat the rest of it too.
Kelsey & I 
We love you all and will continue to pray for Sweet Layla and her momma and daddy. We wish we were there to give you all big hugs.
Dearest Baby Layla,
You are a fighter and a strong spirit just like your mom and dad and you have 100’s of people praying for you. I want you to know that sometimes you have to let yourself relax and not fight quite so much so the blessings of modern medicine can do it’s work. We love you and your family so much and those of our family on the other side of the veil are helping too, so please relax and if possible, take a few deep breathes with momma coaching you. I know that she will need to read this to you, but our spirits can communicate so let me do some of the fighting for you and stay focused on healing. Love you our little Erica.
Aunt Tammie
I am soo sorry that she has come so far then have a big setback, I can truly relate to you, I sat by my Sadie for three months she had really good days in a row then had one bad day that set her back three days. I am just so sorry 😦 she will come home at some point, she can’t live there forever right . Please call me I will be a good shoulder to cry on and I know how hard it can all be (509)380-4013 I am home all day or night
Oh sweetie. You rant all you want. I’ve read the above remarks and what I do know is that God is aware of you and yours. We’ve had some hard news this week, and I’ve shed tears, still am. Wish I could eat my ice cream with you by myself, but I’ll be thinking of you as I overdose on my pint or two.
You are in my prayers. I’m sorry you are going through this, and I support your feelings of frustration when other babies go right home. It hurts when yours doesn’t. Remember we love you, so many of us, and we are all praying with and for you. Hugs. Mom (Aunt Bobbi) sends her love as well…
The Gailey’s love you and you are all in our prayers continually!
I’m so sorry you are having to go through this. Having been one of the few people who have done the NICU experience of a CDH baby, I totally understand and validate everything you say. Its hard. Like really hard. I remember once deciding to stop by sonic (which was literally across the street from where I turned onto the hospital)…I only lived 5 min. from the hospital. I wanted a large drink…after all, we thought little man was doing “okay”. I get to the hospital and see that the hospital had called and all I can hear in my message, was the NICU dr saying, “she isn’t answering”. I totally panicked…and ran up to the NICU. My son had been having bad episodes of SVT’s and they had to go back in and surgically place a central line. It sucked. My mom had just barely flown home, husband was at work and I was alone. Not ideal at all. I share this with you, to know you aren’t alone. I’ll continue to keep your family in our prayers and pray that this beautiful girl will continue to be the fighter she always is.
Btw…I totally get the choking, coughing, mucus, aspirating, throwing up, etc. Its not fun and can be terrifying. I used to have to take someone with me when I was driving in the car, as he would start to stop breathing if he did it while I was driving. 😦 Things will get better.
oh Erika im so sorry for everything your going through since i know your mother you and your family have had strong faith in god and i know that he knew you are strong enough for what your going through and i know god will make everything right for you have a beautiful baby we all love and will be praying for your baby to get better