Beside my bed.

What lays beside my bed? Syringes, earplugs, computer charger, phone charger, baby socks, ear buds, a ziplock bag and a lighter. Seems like such a strange group of things but they all have an important place there. There's all different sizes of syringes. 3 ml for medication, 5 ml for flushes, 10 ml for laxative and 60 ml for gas. Earplugs because I'm a paranoid mother of a sick child who snores and chokes in the night and it keeps me awake (I only sleep with one though so I can hear if she really needs me). The computer and phone charger are a pretty normal thing to have by your bed.. we need our entertainment, and phone services always working right? Plus with late night and early morning feeds and middle of the night blood sugar checks I am obsessed with setting alarms on my phone. The baby sock.. I'm not sure about that.. especially the fact that there is just one. The earbuds because my daughter is such a light sleeper. A ziplock bag is what we have Layla's formula in when we're on the go and the lighter was for some eucalyptus (yes, I had to look up how to spell that) oil burning thing my sis-in-law leant us while Layla had a pretty bad cold this month. Oh how so much has change over the last few months. I notice my last post on this blog was May 28th. That was the day before everything changed.

On Friday May 29th and I had another really rough day with Layla.. cranky as ever, not eating, not peeing or pooing, not sleeping, not letting me put her down. I cried the whole day through. When Aaron got home after school I said "I can't take it anymore, Layla can't take it any more, I'm SO scared." and then he said "Lets go. We're going to the hospital." I knew that if we went to the hospital we would be staying for a while.. I just knew it. So I quickly threw a bunch of all of our clothes in a suitcase and away we went in the car. At first we thought we would go to the hospital an hour away which was where Layla's paediatrician is as well as Aaron's parents who could take Charles (Our English Bulldog). But as we were driving we made a phone call. We called our friend Jordan who happens to be in med school. He knew pretty much everything going on with her and completely understood why we wanted to bring her in. He suggested and gave us the pros and cons of driving another hour further to the children's hospital. I kept having flashbacks of going to the hospital where they had no idea how to take blood from a baby.. Layla cried and cried for hours and then they sent us home. The next time we came in she cried for another hour and I ended up passing out and ended up on a hospital bed in the hallway. That was not a fun experience for us all. I looked back at Layla in her carseat and she had fallen asleep. So the decision was made that we would drive on. We had to pit stop on the side of the highway to give our dog to Aaron's dad but then we kept on. The whole drive I was second guessing myself. "What if they just think we're over paranoid parents? What if they send us home? What if there's nothing they can do for her?" and then onto the most awful thoughts "What if this is the end?"

Thankfully it wasn't the end. We spent the first 4 days in the PCCU (Paediatric Critical Care Unit) and then the next month as an inpatient in the Children's hospital. One of the nurses in the PCCU said to me "If your child ends up here then it's a good thing you brought her in!" haha I can't believe I second guessed myself. But you have to understand that because we thought our daughter had SMA we thought that what was happening to Layla was expected. That was the most emotional month of my life.. In some ways we got a lot of rest that we hadn't had in 9 months. Layla slept in the hospital most nights with my mom in the room and we slept at the Ronald McDonald house across the street. But it wasn't true rest spending your whole day in a hospital room running millions of tests and talking with doctors. She was constantly on an IV, had blood work done on the regular, multiple scopes, skin biopsies, muscle biopsy, urine samples.. the list goes on. 

We left the hospital with some good and bad news. The good news was that they ruled out SMA! You would think that would make me jump for joy. Sadly it doesn't. Fully. Even though we were told our daughter doesn't have that terrible, awful disease now we feel even more confused. Because they told us that she likely has something with a similar outcome. But there's also a chance she could have a different disease that might give us more time with her. There's nothing concrete unfortunately. Her paperwork says she is diagnosed as "Progressive genetic neuromuscular disease NYD (Not yet determined)".   

The best thing we left the hospital with is a G-tube. Between Layla's dozen specialists and ourselves we sat down at the round table for a meeting and discussed how no one could see Layla being able to gain the weight she needed and continue to grow without the help of a feeding tube. She received that surgery on June 19th. For the hours/days/weeks post surgery I hated myself. Seeing her intubated and crying in actual pain. I thought "How could anyone put a baby through that? How could I do this to her?". But after about a month post surgery my feelings have completely changed. No she has not turned into an easy baby. BUT she has turned into an easier baby! She sleeps for longer chunks of time, she's happier for longer chunks of time and she even lets me put her down for longer chunks of time!
Specialists are still working away at finding us a diagnosis. I just want to know what we can expect for the future. Right now we have no idea. She is now 13 months old. We have just gotten to the point where people are really noticing the difference between Layla and other kids her age. Before people just assumed she was younger than she is. Now, she is too big to be considered an infant. People always think that she's sleeping because she has no neck support so she's always laying across our arms, or laying on the couch. She doesn't fit in infant things anymore either so we're starting the process of getting "Special" things.. This week she got a new bath chair and we're on the waitlist for a new carseat. And I'm sure there are much more things to come!