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.