But then, it seems, I spoke to soon - On Saturday, allergies, sinus crud or a virus hit our home. Last week, Brennon had some severe allergies, so he went to the doctor for an allergy shot. On Friday, Jase seemed nasally but the pulmonologist had talked about how bad allergies were right now. Knowing that Jase has a tendency for allergies, we really didn't think much of it. Then, when he threw up snot in the car seat (YUCK!) coming home from a family dinner, I just knew his allergies were bad. Then came the nasal congestion. He didn't sleep well, but played great all day Sunday and even Monday. He wasn't horribly hungry and we didn't push it because we knew that he had sinus drainage down his throat. We did push the fluids to help move the sinus drainage down his throat. We gave benadryl and it helped greatly. I was upset that Jase didn't feel well, but I wasn't to worried, his lungs sounded good and the congestion seemed to be directly behind his nose. And then his nose started to run. I was so thankful the congestion was breaking up and I started giving a few neb treatments to help him breathe. Little did I know he would develop a cough on Monday night. :( So we went to the doctor on Tuesday. To be honest, I wanted to wait, but when Brennon said, "I think we should go" - I listened. He coughed all the way to the doctors office in Waukee. How horrible did I feel when I realized we had air coming in to the car from outside all the way to Des Moines. The pollen count is at a 10 right now - what was I thinking? As soon as we were in the pediatrician's office. All coughing stopped. He seemed to be breathing well and he was trying to play with the toys. (HA HA - like I would allow that! Germ City on those toys!)
We met with the doctor, explained the symptoms... the nasal congestion, the sinus drainage down his throat, the wet cough that sounds like he is trying to puke up snot (sorry for that), the active way he plays, and his eating habits - although less - were still good, and his lack of sleep. Then the exam - LUNGS SOUNDED AWESOME. Let me tell you the relief to hear that. No Fever!!! Ears looked great and nose was congested. Yep, we knew that one! And oh no - his throat was red. My first thought was because the sinus drainage was running down this throat. So now the diagnosis. Jase was diagnosed with his very first cold virus. :( I was so confused. Wasn't the cold supposed to make a baby clingy, tired and lethargic? This didn't sound like my kid. He was chasing the cat, crawling on furniture and getting into everything he wasn't supposed too.
Whatever this is, I sure don't want it going to his lungs so we are treating it aggressively like a cold. Lots of fluids, steamy saunas, saline and bulb syringes, vicks and vaporizers, neb treatments and cuddles. That is when he will let me cuddle because he was constantly on the go.
These are pictures from yesterday - He looks so sick!
I was so sad. I wanted so badly for my kid to not get sick. Not yet - Not now - and at least not before he turned two. Now, I realize that every child gets sick, but not every child is a 23 - weeker. Not every child has chronic lung disease and receiving synagis to prevent RSV. Not everyone has to balance their life between what is best for Jase and our family and the fear of getting sick. My NICU psychosis returned and I felt guilty. I felt guilty for going to the Olive Garden for lunch Friday afternoon and for going to our family dinner during cold and flu season. I wondered what other preemie moms would think that I wasn't home bound all season - I worried that we would be hospitalized because of this illness and if doctors or nurses would judge that I hadn't kept my child healthy. Yes - this is NICU psychosis and it happens long after you leave the NICU.
NICU Psychosis - It is always there, waiting to resurface, waiting to smack me in the face and wrench at my heart. It has been 14 months since we left the NICU and my psychosis is still there. I have just learned to manage it better. I still do the dip and dodge if someone is coughing. I still remind the stranger in the bathroom to wash their hands. (Yes, I do that!). I encourage moms to leave their child rear-facing until they are two - knowing that my child will not be forward facing until he is older, bigger, safer. BUT - I let others touch my kids without immediately reaching for the hand sanitizer. I also allow my child play dates and trips to a restaurant during a non-busy time. I have to balance my child's life and socialization with the risk of not getting sick.
And I am tired. Working until 2 am on Friday night and then having Jase not feel good since Saturday has left me exhausted! Last night was night 5 of no sleep - if I didn't do something quick, I was going to get sick and then I would be no good to my family, my job or myself. So, after being wrenched awake at midnight because I couldn't hear Jase breathing, I got up. I gave Jase a treatment and put him quietly on the living room floor. And, I went searching. I was out of mind with exhaustion. I was to tired to think "hmmm, maybe what I am looking for isn't needed". All I knew was I needed sleep! I dug under mountains of folded clothes in Jase's closet and I found the machine that monitors Jase's heart rate and oxygen saturation. Attached was a used pulse sox. After attempting to attach it to Jase's foot without waking him - I realized it wasn't going to work. So out to the garage to search the trunk of the car for a new one. Yep, rational thinking right there. At this point whatever I needed to keep my sanity with out worry. I finally found it in the hall closet with the oxygen ready to go back to Unity Point. I hooked him up, put vicks on him, and went to my bedroom where I yelled at Brennon to cover his eyes. I unplugged the cool mist vaporizer and attempted to carry it without spilling to Jase's room. After rearranging everything, I carried a very sleeping baby to his bedroom and laid him in the crib. I then excitedly ran to my bedroom, turned on the monitor and laid my head on my pillow. WOW, I realized that I might actually sleep worry-free for the rest of the night. And my eyes popped open and I proceeded to lay awake and watch my sleeping child. Praying that God would heal him during the night - giving him peaceful and healing sleep. Wide awake thinking to myself that the entire ordeal just lasted until almost 2 hours. And finally I fell asleep to Jase saturating between 95-100 ....
Until the beeping woke me an hour later. Because wouldn't you know albuterol makes a child extremely spazzy! As he is thrashing in his crib, I have to go and shut the damn machine off. He obviously didn't need it. How is that he can sleep through the dishwasher, the vacuum and the washing machine all going at the same time, but me tip-toeing through his room and he is wide awake. So to the rocking chair I went. 3 am - SERIOUSLY. And 30 minutes later, here comes Brennon - my knight and shining armor asking me if I wanted him to take over. Are you kidding me... music to my ears. YES! I crawled under the covers, said a few more prayers and fell asleep.
Sweet, uninterrupted sleep... until 6 am!
Today - we continue on - continuing on. Today, Jase has been fussy and TIRED! I guess, if you think about it, if Brennon and I aren't sleeping - he really isn't either. At least not the good quality sleep that he needs. He has been a milk drinking machine today, then it messes with the congestion and he gags on snot. I have been doing albuterol less today in hopes that he will get more peaceful sleep and because we know the congestion is in his sinuses not his lungs. And I pray. I pray that Jase continues to make improvements, that his sinuses continue to drain and that it does not go deeper to his lungs. Hoping a little more food, another dose of benadryl and some good sleep will be just what he needs to kick this.
That's when I realize - I AM THAT MOM! I am the mom who worries. The mom who searches the house high and low for the pulse sox and monitor. I am the mom who hooks him up to the monitor when everything rational says he doesn't need it. I am the NICU Mama - the Baby Loss Mama - and the Mama who said she would never be that Mom. Wow, how situations and life events change us! I was the one who was always okay with my child eating dirt (he has by the way.. and cat food too), that didn't care about the messy house, dust, and shoes in the house. The mom who laughed at first time moms who worried about every sniffle, every spit up and who didn't let their kid be a kid in fear that they would make a mess or get sick. I am all of those things - I choose playing with Jase over a house full of dust, I ignore shoes on the carpet every once in awhile, and I will still take Jase places when the benefit outweighs the risk. I will also always worry about a sniffle and if he is getting sick and what kind of cough is that? I analyze the spit up, vomit and poop. Yep, I AM THAT MOM! Jase will not be little forever. Children grow up and I want to make sure that my NICU/Preemie Psychosis that makes me THAT MOM - doesn't affect Jase and his development. I will raise a child who is strong, who has values and morals, who loves not hates, who sees the best in others, especially when the world around him sees the bad. We do kisses and I love yous. We do hugs and messes and everything fun. Because I AM THAT MOM too.
And I will kick these feelings of guilt to the curb. Children get sick. Brennon and I have done everything to ensure that Jase stays well. Brennon has to go to work and at times I have to go out. We can wash our hands and take off our shoes in the house. We can dip and dodge when around people who are coughing but ultimately we take a chance that a bug or virus will make it into our home. Brennon was sick last week and and went to the doctor for an allergy shot - It probably was a cold. Jase puts everything in his mouth. If he didn't, we would be worried about that. So I will not worry about tomorrow, but today continue to aggressively treat the symptoms and to pray. I am just so thankful that we had synagis. Without it, if this is a virus, we may not be able to manage it at home.
For now, he is sleeping peacefully, breathing well, and drinking lots of milk to break up the congestion. Please help me pray for Jase tonight - For health, for sleep, for healing of his cold or allergies (and maybe sleep for mom and dad).
LOVE, Melissa
PS - While you are praying - if you have time throw in a few prayers for my Aunt Cyndi. Due to complications from diabetes, from blood clots, and poor circulation, 2015 has not been good for her. She is back in the hospital at Iowa Methodist. I am pretty sure this is her 5th trip there since Valentines Day - I think I have lost count? Please play for healing and love not only for her physical health but also for her mental health as all of the hospital, ER and rehab trips are sure to take its toll. Thank you and much love to all of our prayer friends!
