Moms Caring 4 Moms: Feelings of uncertainty

Moms Caring 4 Moms: Feelings of uncertainty

Feelings of uncertainty

So we are at another stalemate and not too sure as to what direction we will go in.  After Adam having his tonsils out and all the trouble we had there relaxing in this house hasn't been the easiest.  He's much more mellow yet has a consistent energy level which is so nice to see oh and now he never shuts up lmao.  It's been pretty amazing in that sense.  Watching him and talking to him feels so good because he acts like such a little man.  We had his echo yesterday and everything is generally still the same.  There has not been any changes since his echo when he had his surgery so it wasn't the outcome we were hoping for.  He will be presented at the next cardiological conference in the beginning of May for the opinions of what we do next.  We may not be doing anything but lots more medications though it may not apply to Adam.  Right now he is functioning quite well and his heart is still squeezing well which is the most important thing though there is some more thickening of his heart wall meaning there is more blood flow through the lungs which could pose a problem down the road.  Adam's hole is very big so we won't know how much of an effect it has on his disease until we go in and make the hole smaller with open heart surgery and then we have to cross our fingers that it was the right decision to make in the long term.  The closing of the hole is so dangerous for him it's unreal and they are afraid that putting him on a heart and lung machine during surgery will be even more dangerous because his pulmonary pressures are so shakey so ultimately in the end we have been left with more uncertainty and questions than before.  I don't even know how to feel anymore, I don't know what direction we are going in and I am not sure how much stress I can handle.  This was the first time the Dr and I talked about the fact that people with Adam's disease are at an increased risk to literally just drop dead and that him getting better is more of a dream than a reality.  He will have a lot more medications in the future I'd say and thus far Adam's dream of being a pilot certainly will not be a reality.  Even though I want to have another child I am now torn and leaning towards that not happening.  There is so much stress and uncertainty that I don't know if I would be able to handle bringing another child into this world and always hoping and praying to not be saying goodbye to my first born.  There may be surgeries, there may not, there will be lots more procedures and tears and fears and right now all I can hope is that Adam will remain the same and not get worse.  He's only 2 with an entire life time in front of him and I know in life there are no guarantees especially with where your kids will go in life, with Adam it feels like things are on a string that could literally snap at any time.  Not only do I not know where he will go in life, what he will do I don't even know how long I have with him.  I don't know how long his life will go on for, how "normal" it will be or how many things we will have to hold him back from.  It breaks my heart and makes me want to spend as many moments with him as I can which makes working hard some days.  I love my job which is why I still go and I know how good it is for Adam to go to the dayhome and get away from me lol.  If I had an awful job or dreaded it or saw no future in it I would have left a long time ago to take care of my boy even though it would be soo hard financially.  I am just happy to know that in May we are taking a family weekend trip to Calgary to bring Adam for a Thomas train ride and to play with his buddy.  All I can do and all I do to get through is to cherish the great moments we have and the positive things we can plan and do.  He is my world and there is so much still to do.

Life....

Well it sure has been an interesting period of time over the past little while.  Between the appointments, cancelled surgeries, Adam having croupe and then his tonsils finally coming out there has been a lot of ups a downs.  Adam's croupe was a bad bout and he needed treatment for it which pushed his tonsilectomy back.  It has finally happened and he had surgery on the 25th.  He spent one night in ICU doing well except for having to wake him every few hours for medications. We spent another day in Cardiology where Adam could see the LRT so he was excited to see the trains and then we came home.  36 hours later we were rushing back due to Adam bleeding and bleeding a lot.  One of his clots let go way too early and he was bleeding into his belly.  Luckily I had him laughing otherwise I wouldn't have known until the dreaded time of him puking blood, thankfully that was saved for the ER though still terrifying.  It was sooooo scary to see him like that, going pale, going lethargic and the Dr's not liking his pulse.  All I wanted to do was help my son and I couldn't do anything but hand him back over to surgeons and hope for the best.  Luckily Aaron and I acted fast and got Adam there right away because they were able to help Adam and not have to give him a blood transfusion though he was close.  It was literally the worst case scenario that happened.  The shining light is that Adam is better and is soooo amazing through all the hard and scary times.  He is still recovering and after what happened it's been hard to relax until we know he is better 100%.  I am still having nightmares about the ER and seeing him covered in blood, so it's been hard to sleep.  I feel so much love for my son and I am so happy that he is alright in which it also humbles me because some of the other children in ICU may not be the case.  We are very fortunate to have a child who is 2 and is able to function well at home.  I also learned to let go a bit as Aaron did the night shifts at the hospital to let me go home and sleep so we both have a new perspective as to what each other experiences.  I will now be able to go home when the big surgery comes which is going to do me some good.  For the next while Adam gets to be a kid.  With everything that has happened Adam's heart is still functioning very well thus no rush for surgery, therefore surgery will not be most likely the end of June.  We'll make sure to get in as many good times before then including hopefully a camping trip with Children's Heart Society.  As scary as things are we are finding great support networks and have been lucky to have such great friends and for that I thank you!

Welcome to PeanutReitor

Welcome to PeanutReitor

The Rollercoaster

We are now in waiting as Adam surgery has been bumped from the 22nd of February until March 16th.  It means another month of not being able to fully relax knowing that it is still coming so soon.  Our baby is still going to be put under, still going to have his chest cracked open, heart stopped and worked on.  Instead of the freight train ahead that we had at first mentally set ourselves up for.  Originally we had a week and a half in which we had finally got in the mindset, now we have a month so we need to slow down a bit and get everything in order for that day that will forever change our lives.  Little did we know that when we decided to have Adam we brought someone into this world that has a bigger purpose in his little life than most of us ever have in our entire lives.  All the studies he's a part of, every new medication and Dr's talked to, every surgery, procedure and even his recovery could help another family down the road, or many kids.  This will also pave the way for a child who has literally been to the brink, been through hell, come out the other end and can then choose to do great things for this world.  Adam's purpose and life on this planet could help those all around the World which is the one solice that we are keeping in our hearts.  As scary as it is for us, as awful as this is for Adam positive thoughts and knowing that there is a greater purpose will ensure that everything is ok.  Now all we need to do is wait, keep moving forward and come together and laugh as a family until that fateful day. 

Grade "A" Parenting

Soooo things have really started to pick up here and my heart and feelings haven't fully caught up with me yet.  Adam goes for his open heart surgery on February 22nd, which we found out only a couple days ago which is why it hasn't totally caught up to me yet.  Amongst all the craziness, finding out that Adam does for sure have Obstructive Sleep Apnea and will have to have surgery for that too we were asked to get his teeth checked for surgery as the teeth and the heart are interlocked.  I seriously felt so nervous over taking him to the dentist as it felt like the first major parenting report card.  As a parent of a toddler we are responsible for helping to shape their little minds, feed and water their little bodies and brush their teeth to prevent cavities.  It feels like if your child doesn't have a tooth issue and their mouth is full of cavities that you are graded as a crappy parent and get a lower grade per cavity.  I've never really cared about what people thought of my parenting as I know I'm great Mom. I spend time with my boy, we do crafts, play, puddle jump, have a date night and his great personality shows for it.  When it came to his teeth I cared because it could show a huge faulter in my parenting.  I was almost sweating I was so nervous it was a very strange feeling.  I'm sure I am far from the only parent who became veklemped over the idea of my child at the dentist and thinking oh god do not let me fail this test, I hate tests... I am so glad to say that we passed, Grade "A" all the way, we missed that "A+" due to the fact Adam has a soother still though not for long and his teeth should correct themselves.  Now to keep up the good work, keep Adam cold free for the next week and we're on to the biggest thing to happen in our entire lives.

My Dreams

At night before I fall asleep I think about what the future may hold.  I think of Adam growing up, what sports he may play, what activities he may be into and then usually it ends with me almost in tears.  I know all children't futures are so uncertain but it feels like Adam's is even more so.  Will he have equipment and medicines to keep him alive that will hinder him physically from what his heart desires? Will we have to constantly find other things that he may love?  How can we keep him feeling positive and keep enjoying life instead of feeling like life sucks, is unfair and owes him?  He is such a fantasic kid, has an amazing personality, great imagination, is really happy and so far doesn't think that he needs to be spoiled so I guess I will take it all in strides.  I just need to remember that this little man can help me build cities for Mommy Monster and Adam Monster to knock down, buildings to drive cars through, race cars, feed stuffy's, watch movies, hide and seek and do awesome crafts.  I get to be a big kid all over again, doing the craziest things, singing in stores, saying silly things and being able to do it without looking like a complete fool.  Or at least I feel like I don't look like a complete fool hahaha. I'm sitting here looking at my boy eating ice cream, watching Sponge Bob and is super happy.  It fills my heart with joy.