Another round

Spent another Friday in the Medical Day Unit at BC Childrens. Layla's biochemical Doctor applied for funding and was approved to have her participate in GeneDX genetic testing. They will be going through 25,000 genes looking for any abnormalities that may give us a diagnosis. She has already been a part of another team doing a very similar study (but in Canada vs. The States) so I have my fingers crossed that between these two groups something will be found. Something to give us an idea for our daughter's future. They required a large amount of blood again. I hate that that is what they need the most of. Blood work from hypotonic kids is so difficult to get. Because of no muscles tone, they cannot see the vein. They have to take an educated guess, put the needle in and move it around until they (hopefully) find a vein that will give them the blood they need. Might sound easier said than done but it is awful to watch. Layla has had them try for hours before, trying from both arms, both feet, both wrists and her fingers before getting the blood from her head.. Yes her head. Last time they had multiple nurses, an IV specialist and the anesthesiologist try to get the blood with no luck. Then, after all of that, they said we should just go home. I started crying. This was an emotional enough day as is.. Now they wanted to send us home saying today was basically for nothing. *sigh Coming another day will not make it any easier. It's never easy to watch your child be poked and prodded. We've come too far to give up now. We have to get some answers. This was one of the few times that Aaron took the day off work to come. Aaron spoke with the doctor and convinced her to send one more person to try. This time they sent someone from the blood clinic (imagine that) and she got it all! Now there were tears of joy, and lots of snuggles for Layla. That back story was just to give understanding to why I was so excited when this time around that woman from the blood clinic was the first one to come. And guess what, she got it all within the first two pokes. Thank goodness. Still lots of tears from my baby but at least it was for good reason.
After the blood work we prepared for a lumbar puncture. They gave her a numbing cream on her back and a sedative to help keep her calm. It didn't work. Possibly because she is so use to her sedative she takes to go to sleep at night that it is easier for her to fight through it. Or perhaps because they gave it to her just prior to doing the blood work (even though I mentioned how that didn't seem like the smartest timing to give her this medication). This was a sterile procedure so we had a private room. The nurse turned Layla on her side and created a curve in her spine by holding her head and bum close to her. Then the doctor inserted a needle into her lower spine. At first she was upset because there was a little bit of blood coming out with the cerebrospinal fluid which could have compromised the samples and meant she would need to take it out and reinsert but quickly it disappeared and turned into clear liquid drops. She collected in eight different vials about 10-20 drops.
With all the tests completed within the last year and these ones on Friday I feel like they have to find something. They have ruled out so much! The doctors have mentioned time and time again that they believe they give be able to give more answers than we have so far. For this group of tests we have to wait up to 6 months to get the results. So i'm not letting it consume my thoughts in the short term. In the short term we continue living life as we have and take things as they come.  
A couple people have asked me if getting answers will really change how we live. At first I thought not really. Since Layla's been around and especially post  the Ontario hospital stay our life has changed so much already. Right now we have a good routine going. I've got the feeding, meds and appointments down to a science and I even forget once in a while that this isn't the norm. If we got a diagnosis it would change how much effort I put into getting respite and going back to work at some point. It would change my patience level for Layla. It might change how many pictures and videos I take. It would change how often I am away from her. It would change if and when we would consider adopting another child. So yeah it will change a lot of things I suppose.. But change is my middle name, apparently. I have stopped believing that anything will come easy for us. Everything comes with perseverance and a lot of fight. We are forever changed. 

  

Emotional Mush

"Should we stop at Tim Horton's or Starbucks, Kaiti?" Aaron asks.
Simple question. But I could not come up with an answer. My brain was swirling with the pros and cons list of either option and could not make a decision. Well Starbucks is more expensive but I love their green tea lattes (non fat, no foam, sub sugar free vanilla). Aaron like's the drip coffee more at Tim Hortons but the drive through is longer.. It was too hard, too much. Ridiculous I know. But this is seeming to be a normal occurrence lately. I'm sure it's killing Aaron. Between the daily (and nightly) grind with Layla, between my own personal struggles, my husband's, my family's, I can't take on any more. I wish I could. And I do try but i'm full to the brim. The only way I've been able to describe it is that I feel like emotional mush. Helping others feels good. It fills my bucket. If someone trusts me with an issue or situation they are facing I want to help or at least be a listening ear. Being at home 24/7 now, I'm less often in situations where I can be that person for someone. Work used to be the main place where these conversations occurred. But the very hard decision has been made that I will not be going back. Layla's health has taken priority. And my health, by not having to do 4am shifts anymore.. well not out of the house or my pyjamas anyways.
If Layla does pass away at a young age I want to remember as many details as I can. She has knocked away every other priority in my life. That is where all my time, energy, emotions etc are going. Sure, it is ever so hard at times but I do not want to look back and wish I hadn't gone back to work, that I had more time with her. I am very fortunate to have a husband that makes enough money that with some good budgeting we will be able survive with one income for a few years at least. A woman who's daughter passed away 6 months ago (at the very young age of 3 1/2) put up a post a while back about embracing the moments with your "medically fragile" child. About how she would give anything to hear the beeping of her daughters g-tube pump, bi-pap machine, or evening the hospital machines if that would mean her daughter was still here. Man, did that post ever hit me hard. All the moments when I thought that it would be easier if she was just taken from us sooner, thinking it would save my heart from all the aches. No matter how hard it is to have a fragile child, it's better than having them taken away. Once that child is conceived there will always be pain. Whether the child doesn't make it full term, passes away at birth or is given 3 months, 3 years, or 30 years on this earth, it will hurt and take a piece of your heart with them. So it's too late. I will make the choice to find the joys and cherish this sweet girl we have been blessed with. 

Mother daughter bond

I've heard many times of the moment my mom friends have had to drop their one year old off at day care for the first time before they go back to work after a year of spending every day with them. The way their hearts broke when they looked into their child's eyes as they left them with a stranger and a bunch of other kids. That first year of a child's life creates this intense bond between mother and the baby it can be really hard to separate. Makes sense if you think about it. We are so fortunate in Canada to have the government pay us maternity leave while we take care of our infants. 

For me, the first year was the hardest of my life. So many emotions and heartache for both Layla and myself. That joyous bond wasn't there. I had such a rough start I thought motherhood just wasn't for me. I wasn't good at it. The motherhood others shared about seemed foreign. It saddened me that parenthood wasn't at all what we imagined. Instead of bringing Aaron and I together, it was tearing us apart. Then, once we were told we wouldn't have much time with her I didn't allow the bond because I was too scared it would make it hurt more when she was gone. Don't get me wrong, I did love her but there was just something missing. Not sure if I can fully explain it. 

It took until after a year for the connection to take place. Once I saw her health improve, I gained hope. Now at 16 months, it is there. I can feel my heart overwhelm when she looks into my eyes and smiles. I just love her so much. And I never want her to leave. I pray every day that God won't take her from us. I pray that she will prove doctors wrong. That she will amaze us with her progress. Even if it looks different than typical parenthood, that's ok. Not ideal, but ok. 

My "maternity leave" has just begun. And I have lots of catching up to do.