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!