Patience... Easier Said Than Done...

Like usual the past few weeks have been filled with many up and downs! But to start things off I'm sure you are curious on how the CT scan went. As I mentioned in my last post they wanted to do a CT scan to see if his lungs are growing and to see if they could get a clear picture on if they think he'll need to be ventilated long term or not. Well I'm incredibly happy to say that the CT scan went amazingly well. It was the quickest procedure I've ever been through with Deklyn! Everyone seemed very happy with the results as well! I've mentioned in previous post that Deklyn has Pulmonary Hypertension, with that condition usually comes Pulmonary Hypoplasia which is where the blood vessels in the lungs are different sizes, so they were expecting Deklyn to have that and he did not! They also could tell that there was lung growth so we were so happy to hear that even though we knew his lungs are growing it was great to hear they could see it!

There was another very exciting thing that happened this past week. A while ago one of our nurses approached me and just wanted me to know if we wanted, we could plan a day where we could take Deklyn out of his room and into the play room for an evening! I was pretty excited  to hear this because as far as I knew we wouldn't get to have Deklyn out of his room until he was on the portable ventilator. So we planned a day and thanks to the help of many different hospital staff, for the very first time Deklyn left his room  (not for a procedure!) and also for the very first time since Deklyn was born we got to have all my husbands family in the same room. It was a very exciting day! It was nice to finally be at a gathering and have my baby there to take care and show off! I'm not expecting this to be a regular thing but even if it just happens this once till he's on the portable vent, I am so grateful that we got to do it even once!

It was also my birthday this week and I've got to say it, I am so blessed to have the most amazing husband I could ever dream of having. My husband goes back home during the week to work, he gets to come back here to be with us Thursday nights and stays till Sunday so I was only expecting him in the evening but when I walked into Deklyns room in the morning of my birthday he was sitting there waiting for me! It was the most special thing he could have done for me and a totally made my birthday so special!

This weekend, although it had a lot of positives it had a few hard times in it for me as well. Although I try my very best to be a positive person, I'm not always that way. A few people we know had babies, and I always try my very best to put on a brave face and be the happiest person in the world but every time I hear someone's pregnant or someone had a baby I feel a hurt inside that is hard to describe. Not that I am not incredibly happy for the couple, but I guess I'm still not over the loss of not having a normal pregnancy and not having a normal "after babies born" experience. I don't mean to sound negative, and I know I am not the only one this has happened too and I totally know things could have been much worse than this! I'm really just being totally honest here! I would never wish what has happened to us to anyone else. I know I tend to seem like I have it all together and I'm handling everything so well, and I think most days I do. But there is the odd day where I feel like I'm completely falling apart and just can't seem to get myself back together.

When Deklyn was first born there was no doubt in our minds that we'd have Deklyn home in no time, and don't get me wrong I know we will have him home. Before he was born we said we'd be home by christmas, after that we said we'd be home by our sister's wedding, after that it was by Sheridan's birthday, then it was by my birthday. And I really don't mean to sound like I've given up hope, I really haven't! But when you see these goals you set and decide to believe that you'll see them happen, its kinda a kick in the stomach when you don't see it happen. I know everything will happen in good time, I know I am blessed to be where I am, and have so many things to be grateful for. Some days its just incredibly hard not to just focus on all the things you want and all the things that you think are best for you. I know many good things will come of this and I just need to be patient.. Patient is a word I have come to hate... haha!

(Deklyn's cousin turned 3 this last week and this was a party hat they gave us to bring back for him)

I truly appreciate everything anyone has done for us, whatever its been! You are truly helping us get through this, and on days where I feel like I'm totally alone I try my best to remember all the amazing things God and you guys have done for us. We do have some incredibly hard days, but really most of them are good! Some days I really wish I could see where this all ends, but really what would the fun in that be right? I'm just still learning to trust, and try my best not count on my own strength cause I know if I do that I'm going to be burnt out in no time!

 If there was one thing I could say, or one thing I want people to learn from what I'm going through it would be this: Be grateful... I see a lot of people everyday living lives they never thought they'd live. People who'd give anything to sit with their child on there living room couch rather than on a hospital bed. People who'd love to sit up all night with their crying baby rather than lay beside there beds hearing the sounds of monitors beeping. People who wish they could hear their babies cry or their children talk.  People who'd do anything to have their child healthy. I've also met a few people who'd give anything to have their child alive again. Be grateful for what you have, even if you think your situation is the worst out there I bet you can find someone who's situation is bit worse than yours. In saying all this, I'm meaning it in an empowering way not to make you feel sad! I want to encourage you to do what you can for others, and if there is one thing I've learnt its that being sad and unhappy is not a very fun way to live! Be joyful in all things! You'll see how your situation looks through new eyes if you choose to be joyful! But like I said, I am learning in this as well!

Strong & Full of Goodness

I couldn't think of a good title for todays post, I usually do have a very hard time with that! So today I thought it would be a good reminder for me to title it Strong & Full of Goodness because that is the meaning of Deklyn's name. And that is exactly what he is, he is the strongest little boy I have ever meant and in turn helps me to be strong, and if you have ever seen him in person or even by looking at his pictures you can tell how "Full of Goodness" truly suits him! As usual Deklyn has been doing so well! He's just been so happy lately and just yesterday he's started moving around a lot! I got there in the morning, lifted his blanket and he just kept kicking his left leg like crazy! It was so cute, and ever since then he's been moving his legs and arms so much more! I love it! Its kinda like a little re-assurance from him. In the last few days he's also been more awake and playful which is super fun! Its so awesome to see him happy and interactive, it definitely makes it a lot easier on me!

I've had a bit of a stressful last few days, I've had lots of doctors and medical staff come in and see Deklyn and as usual they speak the worst. And it always seems to be doctors who just met him, they say how he's doing so badly ventilation wise and how it looks like he could need to be ventilated for his whole life or at the least a very long time. Maybe I should be more assertive and just say "No he won't" but I tend to just listen and in my mind say those things. I'm getting very tired of being told "Its gonna be a long haul", Yes I've been told that since I found out almost a year ago that there was problem with my baby... I've been sitting here for almost 8 months. I also know we are over half way done so you can stop saying "Its a long haul". Some days I think I could just about go crazy here... but then other days aren't so bad! I think I've just had a long string of bad ones...

A lot of people have been saying to me lately, "You must be so excited, your so close to getting to go home!" and yes I am very excited! Words can't describe the feeling when you've had your child living in a hospital for over half a year, just the thought of getting to go home is terribly exciting. But in that same moment it is extremely terrifying. Having a child dependant on machinery is so scary, at least for me it is. The only thing that gets me by is knowing that this isn't forever. I know I'll be able to do it, he's my son and I'd do anything for him but it doesn't make it any less scary. 

One of the things that will be happening very soon, is Deklyn will be getting a CT scan. They want to know exactly how big his lungs are so this will actually be happening hopefully sometime this week. But we know how it goes when your told when something will happen expect it to happen 2 weeks later! He will need to be put under for this which I really don't like. I thought it'd be as simple as an x-ray but its not. Those of you praying for us, could you please pray for this to all go well and that we also have good results back from the test? Also for peace for us, I hate seeing my son be wheeled away where I can't do anything for him. I would really appreciate it! On a less serious note... you could also pray that they don't choose to put the IV in his head, his hair is just starting to grow back so nicely haha!!

Its feeling kinda surreal that only a year ago I was 20 weeks pregnant and going to my ultrasound. Never once thinking anything could possibly be wrong. I will never forget that day, and I think its fair to say it was the absolute worst day of my life. I have never felt that low, and I have never felt so crushed. For the next few days after I would wake up every morning crying realizing that what I had been told wasn't a dream. It didn't take to long and I was happier again and believing that everything would be fine. But every time we went back to the doctors office was another blow and I was back down on the ground wishing I was anybody else but me. Now looking back although it might sound strange, I am so happy that I am me. I have learnt and grown so much, and I feel I appreciate things in life a lot differently than other people who don't have to go through things like this. Although things have gotten much better, I still have those days. In the same way that Deklyn brought me through my pregnancy he helps me in these hards days like today. During my pregnancy it was his wiggles and pokes and now all it takes is just looking at him and I know things are going to be ok, just like I've made it through this past year, were going to make it to next year and look back in amazement! I just can't wait for next year... haha!

These next few months are going to be filled with lots of learning and overcoming a lot of fears! I'd like to ask for your prayers as we are getting closer to home. It is super challenging being a parent to a child with extra needs and it definitely takes a lot of energy (not saying being a parent to any child doesn't!). Some days I feel like I'm back in high school having to learn so much! But I know with God giving us strength we can do it. I just wish I could go ahead in the future and see where we are a year from now, it sure would make things easier!