More Amazing X-rays!

This is going to be one of my shorter posts, not a whole lot has happened but I know its been awhile since my last post. I wish I could say this last while has been easier but in some ways its felt like the hardest yet. I had been pretty sick with a cold and decided to go home for a night to try and get some rest. When I left everything seemed normal with Deklyn, but on my way back to the city I find out that Deklyn was having some problems and they were pretty sure he had a chest infection. When I get to hospital, I was informed that Deklyn was going back to PICU where he can have 1 on 1 care while he is so sick. I was pretty upset in the moment, and it felt like a HUGE step backwards. I am happy to say that our stay in PICU wasn't very long and we are now back in our little room where we feel a quarter way closer to having a normal life! If your wondering how you can pray for Deklyn,  please pray for his heart rate to come down. Normally while awake he will be anywhere from 130 - 150 but since this infection its been anywhere from 150 - 200.  And as usually please pray for his complete healing. Right now, we feel like we are no where close to coming home and I can not tell you how sick I am of being here. I am so grateful for everything that has been done for us here, but I am so ready to get out. Most people are telling us not to expect to be home for his 1st birthday but I am definitely standing in faith that we will be!

I know Deklyn will be completely healed, and I am so tired of doctors coming in and giving zero hope. Doctors telling me in their eyes there is no chance of him ever being off the ventilator. 1) He had no bones, look at him now 2) He is improving, its slow but there are improvements! 3) Our God is healer!! As often as in my head I feel like I have given up, I have never given up in my heart. I will see my son come off the ventilator this I know with all my heart! Some people might think I'm crazy, that you need to look at the facts. I don't think like that, and I don't think there is any reason not to have hope! 

I've met alot of new familys here in the childrens hospital, and if you have never had one of your own children in the hospital you have no idea what these people go through. There are heart breaking stories here, and they need your prayers too! Please pray for the families with children in hospital, it is a life most parents never expect to live and its one of the hardest things I think someone can go through. 

To cap off this post on a high note, I have some more x-rays to show! 

Here's just a reminder, his December 20th x-ray and  here's his August 28th x-ray! Incredible right??

And here is his left Leg the 1st one is from December 20th and the 2nd is from August 28th. They getting much longer!!

And here is his left arm, the first is from December 20th and the 2nd is August 28th! Amazing :)

You can not look at those X-rays and not be amazed! I am so happy when seeing his progress, and I know there is only more good things to come. Its the waiting that kills me! Its been almost 9 months, and unless you've been through it yourself you have no idea what it is like! I would not wish what we are going through on anybody, its the hardest experience I've ever been through but I am also grateful for the chance to be a part of something as huge as Deklyn's life!

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!

One Step Closer To Home

It has been a very big week for Deklyn! He is now 7 months old and he is no longer in Intensive Care! At first I was only excited to move because it meant we were a step closer to home, but it just hit me one day that its actually a big deal not to be in Intensive Care any more, it means he has become more stable and things are moving in the right direction which is so exciting! I will not be mentioning where we are staying in my blog for various reason, but there is something I just need to say. We appreciate every single one of you who have been supporting us, praying for us, and just being there for us in this, and I do realize that many of you would love to come and see Deklyn. I'm going to have to be a bit of a momma bear here, haha! Deklyn's hospital room has become our home, and we have had incidences where people have shown up in his room with out us there. I know everyone has good intentions, but for us when we come and see a unexpected visitor sitting beside our son or even walking into his room while we are in it, it feels as though some one has walked straight into my house and right into the baby room without even asking. 

I do realize when someone is in the hospital it just makes sense to go visit them, but it is a bit different for us in that it is our baby boy we are dealing with. He doesn't always like strangers around, and really I would love him to meet everyone who has supported us and for him to see all the wonderful people who have gotten us through this hard time but that will all come in good time. Now, I am not saying no visitors but we would appreciate it if you would like to come see us, please notify us ahead of time. Deklyn has good days and bad days and some days are just not good for visitors to be around. I appreciate all of you  for understanding. This was really hard for me to do, but I know its what's best for my son and I know if you would put yourself in my shoes you would do the same.

Deklyn has being doing really well in this new place and just seems to be getting better everyday! Of course there is the occasional day where he seems to be unusually grumpy and seems as though something might be wrong but other than that he's been amazing! He has been needing a lot less oxygen lately and we have been doing so much with him! It seems kinda strange but in his new room, Sheridan and I have felt more like we are parents than we have since he was born. We do basically all his care, and nurses just pop by to check on us and give us his medicines. It is so nice that finally after 7 months of being a mom I am starting to feel like one.

I was very encouraged by our study doctor the other day. I have always known that Deklyn would be 100% normal and in my mind I kind of thought that by the time he was in kindergarten that he would be just like the other kids. But our study doctor told us that she thought by the time he was 3 he would be there, like that would mean he's off of a ventilator and doesn't need his trach any more, he'd probably be moving around by himself well, things like that! I was just so excited! I know she's only saying what she thinks but I really trust whatever she says and she usually doesn't say things unless she's fairly certain they will happen. She also told us that she thinks we should be home before his 1st birthday which was so nice to hear from her!

Like always I want to thank all of you for supporting us. This is most definitely the hardest thing I have ever been through and yet I know there are much harder things that we could be going through right now.  I have been streched in many ways I never thought I'd be streched, and I have learnt so much through all of this. We thank you for continuing to pray for us as we learn and do things many parents never have to do.

More Changes Are Coming

After a few miserable weeks, we've finally had some encouraging days! Deklyn did get his trach changed to a longer tube hoping it would go past the narrowing in his trachea. The change went smoothly, however a scope showed that his trachea still narrowed after the new trach. I was very discouraged and felt very lost. I was really hoping this change would be a step towards big changes for Deklyn. The doctor told me that they wanted to give this new trach some time and see if it seemed better than last one. If it wasn't they would get in an even longer trach and if that didn't work we'd have to talk about other ways of fixing his airway which had many complications along with that.

The doctor also told me there were 3 things we needed to look at to see that this trach is doing better than the last, 1 - He's needing less oxygen 2- The pressures on his vent go down 3- He doesn't need his neck so extended and he's not turning blue with every time we move him. A few hours after the trach was in place I saw all those 3 things happen, and I was so encouraged. So as of right now the doctors are happy and we are just waiting a while to make sure this trach continues to do well for Deklyn. Deklyn's also began teething, which is awesome because alot of HPP babies don't get their teeth or they fall out early. But Deklyn has been fighting fevers and other things because of it. I know these things are normal for any baby but its pretty frustrating when your trying to get your baby on to bigger and better things and the thing holding you back is teeth! And being in the hospital, when someone has a fever and is irritable your first guess isn't teething, you right aways think something more serious is going on. Sometimes its just the simplest thing bugging him.

They've tried Deklyn on a new type of ventilator, the kind of ventilator he would be going home on. It didn't go smoothly the first try but they are going to be trying again soon. I'm so excited because for so long I've felt like going home is so far away, but talking about putting him on this vent means its sooner than we think! Also late this week or next we are supposed to be moving to another part of the hospital, again its bitter sweet. I know its a necessary move, and one more step closer to home but just like in NICU I've gotten so comfortable here in PICU and I will miss the staff here so much!

I'm also really nervous that we are getting closer to going home, of course I want to go home but Deklyn isn't your average baby. It feels nice to have the security that if something goes wrong a nurse is just a few steps away. We are still a ways off from home yet though. In the mean time were going to get to do new and exciting things with Deklyn when he is finally on the portable vent like take him for walks and as he gets more stable possibly take him out on day passes!

 I started reading a really great book that would be interesting anyways, but I'm sure it has even more meaning for anyone who has a child in Intensive Care. Its called "The boy who came back from heaven", its a true story about a father and son who were in a terrible accident and the son should have been killed but miraculously survived. There are lots of parts I love about the book, but the main part for me is that I can relate with so many things in the book. I think a hard part for me in the last 6 1/2 months has been feeling like no one understands. I know people try, and they imagine how hard it must be but no one really knows. I smile and laugh it off, and speak positively (for the most part) because thats how I was raised and I believe it helps, I don't really let people see the side of me that is having the hardest time of my life. Reading this book has really shown me, some of things I feel and think are totally acceptable for what I'm going through. 

This book also reminded me to keep believing, there are some things I believed in the beginning for Deklyn that I kind of let fall to the sides. I was believing that Deklyn would totally be off the vent before we took him home and when we decided to get him trached I kinda stopped believing that would happen. I'd like to ask those of you praying for Deklyn to believe with us for this. Were still going to be prepared if he does come home needing to be ventilated, we'll know how to take care of him but I see no reason why we can't believe for the very best like we did from the very day I was told something was seriously wrong with my baby.

 Thank you for continuing to believe with us, I tell Deklyn everyday that he has no idea how many people love him and are praying him. We are so thankful for everyone one of you and we know you each have played a part in Deklyns journey so far. I'd also like to ask for prayer for myself and Sheridan, we need prayer for wisdom to know what is best for Deklyn, confidance in all the things we are learning to do for Deklyn, peace & courage. Were starting to see a glimpse of a light at the end of the tunnel, I know its quite a ways yet, but even its only 3 more months I'd be happy!

Let Your Name Be Lifted Higher

I'm not gonna lie, these past few weeks have been the hardest of all the 6 months we've been here. I'm tired of being alone, I'm tried of not being at home, I'm tired of only seeing my husband on weekends, I'm tired of hardly ever seeing my family... I guess we can say I am just tired of everything. I try my very best to stay positive because I know with all of my heart that things could be much worse. But what can I say... I'm human, and humans feel sorry for them selves haha! 

Its funny though, cause I can sit my room and complain and feel sorry for myself and I walk over to the hospital the whole time thinking about how life is just so hard right now and I walk into Deklyns room and I totally forget everything I had thought or said. Deklyn has made me understand how blessed I am and he has made a stronger person than I would have ever thought I could be. I have always dreamed of being a mom, I couldn't wait to have my own kids. When I found out I was pregnant, I had no idea the journey that lay ahead of me, I truly feel that this situation is bringing me to where God wants me. If everything had been fine with Deklyn I would not be who I am today. I've been totally pushed out of my comfort zone and have had no choice but to grow and become strong, otherwise I really don't know where I'd be right now. If I hadn't, I could see myself being very depressed and not caring about life. 

But back to Deklyn, and enough about me! We still don't have a new trach for Deklyn but that is supposed to be happening tomorrow so I can not wait! I've been waiting over 2 weeks to hold him, give him a bath and all that good stuff. We are believing that this new trach is going to be just what he needs and were going to start to see him improve so much more with his breathing and tolerance to movement. So other than that, nothing is really new were just still waiting! I want to thank everyone who is praying for us, and supporting us. I can't wait for the day my post title is WERE HOME!!! but until then thank you for believing with us that we will get there, and for praying us in the mean time for strength and patience. God WILL be glorified with Deklyn's life, and I am so proud to say that I get to be his mom and watch what God has planned.

Happy 6 Months To One Amazing Boy

These last few days have definitely been the hardest of our whole stay in the hospital! It all started on Fathers  Day, It started off on a happy note where we got to see a family that has stayed in the hospital quite awhile as well go home, of course we were sad because we will miss them but so happy that they get to go on and enjoy parent life as you would expect it to go. We went to go see Deklyn and I got Deklyn all ready to present his very amazing daddy with his Fathers Day gifts.

Everything was going well he just seemed unusually pale. Later that day we came back and he literally look like a fish out of water, he looked as though he was gasping, he was pale, cold & sweaty. His eyes did not look like Deklyn's eyes. Very frighting for a mom to watch, eventually it got better and he settled down and I thought it was probably just a one time thing. The next day it got worse, it would start of with him looking like he was gasping and then he would turn blue and go completely limp. The nurses would have to bag air into his lungs and suction him and eventually he came back. At first they thought it was a snit (basically a temper tantrum) but as these events kept happening it became more apparent that Deklyn was in major distress and frantic.

These events were happening several times a day, and it was very unsettling. If you've ever watched your child gasp for air and turn completely blue you know how absolutely terrifying that is for a parent, and if its happening over 5 times a day, thats just about enough to make you go completely crazy. I felt like I was watching everything happen from outside my body, I couldn't do anything to help and I was so scared I would lose my baby. Yesterday on Deklyn's 6 month birthday they decided to do a bronchoscopy where they put a small camera down his airway to see if they can find anything wrong.

They found that just past the trach, his trachea narrows for a short ways and then goes back to normal size. This could be because it didn't form properly just like his bones, or many other reasons but as of right now they don't think it will mean anything serious for him in the future. But right now they think whenever we re-position him the narrowed part of the trachea might be collapsing causing him not to get air and therefore turning blue. Some of the time it may be snits, but its very possible that this is the cause for his blue spells. So right now we are just sitting tight and they are getting him a new trach that will go past the narrowing part of his trachea and that should hopefully fix the issues we've been having.

So we have now officially been in the hospital here with Deklyn 6 months, it really hasn't felt that long. But I also feel like I wouldn't be able to handle another 6 months of this but I never thought I'd be able to do what I've done already. Alot of the things we hoped and believed for didn't happen, but the most important one did and that's that we have Deklyn here with us alive, and showing us that one day we have a possibility of taking him home. Were just going to have to wait and see when that day will be for us. This has definitely been the hardest 6 months of my life in every way, but we take it day by day and keep believing that one day we will have our baby home, he'll be able to do what any other kid can do and he's going to have one amazing testimony!