A minute ago I gave up nurse mode. There was some sappy moment on T.V. and when I picked Grayson up and felt his warm breath on my neck, I lost it. I let the hot tears stream down my face and stain both of our cheeks. I fell into Jon's arms with our sweet babe in between us and I let the fear, and the hurt, and the anger, and the sadness set in. For the first time since Friday, I let myself really feel again.
Now, I realize that so much of what happened over the weekend is temporary. The procedures and the tests are not permanent, and I take great comfort in the fact that Grayson will not remember this weekend. My heart aches for the parents where hospital visits and PICUs and NICUs are more long term fixtures in their lives. Because it sucked. Absolutely and utterly sucks to watch your kid endure pain that you cannot take away from them when they are such little peanuts. I am incredibly grateful that we were in a PICU, where it was the expectation for Jon and I to be present on a continual basis. I have a new appreciation for the special care babies I take care of and the parents that have to leave. We don't provide beds or complementary parent meals. All our babes are in one room and parents come and go. I cannot fathom leaving Grayson over a weekend like this last one has been. Those parents have an incredible amount of strength and are not given enough credit.
On Friday Jon and I were getting ready to take Grayson to his two week doctor apt. He had fallen asleep while playing in the swing and when I came out to grab something I noticed he looked funny. I started counting the seconds that I wasn't hearing him breathe, and gave him about 15 before I stimulated him and picked him up. He had turned dusky in his deep slumber. Again, nurse mode kicked in. I wanted to give him a chance to recover on his own, but I wasn't willing to give him any longer to try and figure that out.
Since we already had a pediatrician apt, we decided to just head that way, because we wanted the doctor to hear the stridor Grayson has been rocking, pretty much since birth. At first it was cute that my peanut sounded like a little piggy when he was eating, or a linebacker when he was hanging out, but the cuteness wears off when you see him retracting and working really hard to breathe. It never seemed worth an emergency room visit because it was never continual and his lips always stayed pink, until our little bit of shenanigans in the swing. I could never find a pattern to his noisy breathing either. Many times it was a bit louder when I would give him a bottle, but there were other times where he was perfectly normal when he ate.
At the pediatrician's office I fed him a bottle in front of her and also mentioned the fact that he got dusky and apneic in his swing. In my head there was some monitor we could go home on and some out patient test we might have to do. In my head, this wasn't a big deal. I tend to try to turn big deals into little ones. You know, because denial is an effective coping strategy.
Our very sweet pediatrician listened to everything I had to say and tried to softly deliver the blow that we need to head to the hospital to be admitted for observation and most likely to have Grayson scoped for possible laryngomalacia. Say what now? This is not on our agenda. I have spent too much time in hospitals already. Jon was all packed up and ready to go away for the weekend for work. But as I am learning as a new parent, plans change.
So we headed over to the hospital for what we thought would be a 24 hour admission and scope. I stuffed down all of my feelings of anger and anxiety. I made a phone call and maybe dropped an inappropriate word or two. Because, really, I was not planning on returning to a hospital for a long time. I have had enough. I am grateful we live somewhere with wonderful access to healthcare, but I am fed up with family members needing it. I am burnt out on hospital systems and how long it takes to get everything done. My emotional and physical reserves have been used up.
Because Grayson needed continuous monitoring, we had to be admitted to the PICU instead of a regular peds floor and because my sweet babe can't tell us what happened or if anything hurts, we had to be worked up for everything.
From our EEG to our scope, our little peanut was a trooper. Again, I cannot voice enough how grateful I am that we were present for it all. While it was heart breaking, and I am sure I held my breath through the entire thing, I held our sweet boy while they shoved the camera up his nose and all the way down by his vocal cords. Of course, they offered for a nurse to hold him and for us to step out of the room, and of course I kindly informed them that it would not happen. Much like watching my momma code, I'm a watcher. I want to be there and do everything possible to make it the best possible situation for my little boy to endure. So I will hold him and as soon as you are done I can turn him around and pull him close. I will swaddle him tight when you are drawing blood, and I will overuse the stupid sucrose water that supposedly helps with infant pain, because if you can poke and prod him while he sucks away on his pacifier instead of being open and exposed and crying his sweet eyes out, I feel like I am doing my job as a momma. I will watch out for my little one and protect him to the best of my ability. I understand that everything is being done in his best interest, but don't mess with me or my babe. I also understand that in this world, my babe will have to endure pain and hardship, and that it is a fine line and a tricky balance between protecting him and letting him live his life and have his experiences. I realize that I most likely held him the entire first night we were there, not because he couldn't sleep, but because I couldn't. Not because he wasn't OK, but because I wasn't. It's a learning process.
It is amazing how quickly you can fall in love. How quickly that baby in your belly can become your son that you would lay your life down for. It is amazing how this little kiddo can mess you up. The tears come more quickly now when I hear about a situation that involves a hurting child. Jon and I were going for a walk and he told me about a ministry that serves homeless children in Chicago. In about .3 seconds I was crying because I could not imagine the pain parents feel if they are unable to feed their children. I see the world differently as a parent. My heart is softer and breaks more easily. The injustices that children face weigh significantly more on my soul.
After 2 nights in the PICU, and one on the regular peds floor we didn't come away with many answers. Grayson had an EEG, EKG, Echo cardiogram pneumogram, head ultrasound, blood work, urine cultures, multiple x-rays, and a scope. All this to tell us he has some acid reflux, apnea, and stridor. According to the pulmonologist, potentially none of these things are related. While Grayson didn't have any true apnea episodes in the hospital because he didn't stop breathing for more than 20 seconds, he did on multiple occasions drop his oxygen level fairly low while he was sleeping. Not really sure why this is happening in a term kiddo. The scope that they did at the bedside was able to tell us that he does not have laryngomalacia, but to be able to diagnose him with tracheomalacia, he has to have a bronchoscopy. Right now we are scheduled to have a barium swallow study next Friday to rule out some other anatomical things that could be causing the stridor and to determine if we can wait and watch, or if we need to move forward with the bronchoscopy. We were also discharged home on an apnea monitor. Loads of fun when it goes off the first night you are home because your kid is pulling his shallow breathing crap. Loudest.Alarm.Ever.
So overall, Grayson is OK. We were able to go home and will be closely watched and monitored until we have more information. Usually kids can outgrow tracheomalacia and reflux, and we hope this is the case.
Unfortunately, mommy and daddy are a little worse for the wear. While we are so grateful that he is home, it is hard to let go of the 'what if.' What if he has another dusky spell. What if we didn't catch this one. What if something is really wrong with our sweet babe. It's a hard balance to live in, admitting and acknowledging the fear, but not letting it take control.
So we will cry a few more tears and hug him a bit tighter tonight. We will again count our blessings and thank God for keeping our baby safe. I will probably drop some more inappropriate words the next time we have to go to the hospital. Thank you to everyone who prayed for us and to everyone who offered to come up. While we appreciated all the offers, there was no way either of us were giving up any snuggle time. While I am sure we could have used a break, I don't think I was ready to step away.
While we don't yet have the answers we need, we have our sweet babe at home. In the big picture, this was only four days. Four days and we were able to rule out a lot of potentially big problems that could have caused Grayson to stop breathing. Hopefully in the next couple weeks we will know more, but until then, we will love him right where he is at, all wired up at home and currently snuggled in the moby wrap on my chest.
All wired up for my EEG