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!

More Amazing X-rays!!!

Wow does time seem to fly! We are coming up on 6 months! 6 months of being in the hospital, not being at home, not being with family as much as usual, but also 6 months with the most amazing little boy I have ever met. The past few weeks have had their ups and downs but things in general have been going well. Since Deklyn's trach we've really seen a new baby. We've been getting to give him baths in a little tub which he really enjoys, Sheridan & I have been able to move him around ourselves for the most part,  and we've got to see him smile and what looks like laughing. We are so proud of our little guy!

We've starting learning some of Deklyn's care, like suctioning out his secretions (basically what we can normally cough out), changing his trach dressings & ties, stuff like that! We have much more to learn but its a start and the sooner we learn the more comfortable we will be whenever we get to take him home. Something else pretty exciting is I got the chance to try and breast feed Deklyn, this was something I always wanted to do but I really didn't think I would ever get the chance. It was an awesome experience and I'm hoping we'll get better at it and possibly he'll get his feeds that way rather than just through his g-tube, but we will see!

They did some more x-rays for the study and his bones are looking awesome, but we've come across another bump in the road with his lungs again. They've discovered he has a mild case of Pulminary Hypertension, this is where the blood vessels in his lungs have high blood pressure. Most patients are very sick when they have this but Deklyn is doing pretty good. He has started treatment for it and we are really hoping that in treating it, his recovery will speed up and we will have him off the ventilator soon! The Pulminary Hypertension may have been holding him back, so we really hope as its being treated we will see changes in how he needs to be ventilated!

And here, a very nice way to end off a post, amazing x-rays!!

Here's just a reminder, an x-ray from December 20th (the day he was born)

This 1st x-ray is his Chest in February & the 2nd one is from June

 Here we have his Legs, 1st set is from February 2nd is from June

 And here is his skull, spine & arms from June!

We are so blessed!

We are so grateful!

God is good

and so faithful!

We know we will continue to see

nothing but more of God's goodness!

Looking at these x-rays makes me think of the childrens praise song, "My God is so BIG so strong and so mighty there's nothing my God can not do"

Our Baby Boy is 5 Months!

So we've had quite an eventful week! First off Deklyn's surgery was scheduled for this last Tuesday but was cancelled due to the Operating Room being too busy, needless to say I was a bit upset because I felt like we had finally come to such a hard decision and then for it to be put off really sucked! But that also means there was an emergency, which wouldn't be good for another family so instead of feeling mad I prayed for the family who had an unexpected emergency. The surgery did end up happening on Thursday morning. We were very nervous, but also excited. We had worked up to this for awhile already, had meetings where we had to talk about some not so great stuff that really no parent ever wants to talk about. But we really truly felt like this was would be a great change for Deklyn.

 This picture was taken right after surgery, the first time we saw his whole face! The first 2 days after his surgery he did really well, surprisingly well! He was maybe sleepier than normal but I expected that. But on Saturday something awful happened. We weren't there when it happened which is probably for the best, Deklyn needed a diaper change and when they had finished Deklyn's sat's started to drop and his heart rate was completely gone, he had no pulse. The called a code blue and they had to compressions, they then suctioned him and he had a lot of plugs (secretions that have blocked his airway) come up. They did more compressions and they got him back. Over all it wasn't alot of time that he didn't have a pulse but this is the first time this has happened. 

Ever since then he's had an episode like that everyday, not as sever but he seems to get these plugs and his sat's drop like crazy and he needs to be given breaths manually till he recovers. It is very scary. I have never felt like we might lose him until this. I know he will be ok, and I try my very best to trust. Its just a bit frustrating for us because we were told how great the trach would be for him and how much more we'd get to do and I know his surgery wasn't that long ago but I feel more scared than ever to do things with him. I used to change his diaper no problem and now I am terrified that his heart rate will drop. They think that the trach is just so small and his secretions are so thick, that is why he's getting these plugs and there isn't a whole lot we can do about it. But we are really just hoping that this will pass, and before we know it he won't even need the trach anymore.

The day before his surgery we had an amazing day with him. We got to give him a tub bath and he just LOVED it. He was really upset before the bath, his heart rate was up and he was ticked. He had liked his bath the day before so I thought why not give it a try. He just loved laying in the water and he started kicking his one leg and after that even when he wasn't in the bath he kept kicking it so that was really neat. We had some really good play time with him after his bath and he was just so happy! So I am now waiting again for those days which I thought would be even easier with the trach, but now it doesn't seem like it.

So, needless to say it really has been a very hard weekend. But we are totally believing for this to improve and that he'll be better off than he was before the surgery. Its just hard to see at the moment. We are anxiously awaiting the day we will get to take our baby home, take him out for walks, give him and our families the normal life that everyone expects when you announce your going to be having a baby. I know that we most definitely don't have it the worst, there are many people who have lost their babies and I am so sorry for them, I have no idea how they get by. I hope I will never have to experience anything like that. Right now I am just trying to be grateful for what I have, and not focus on whatever one else has. I know there will come a day when I will get to do all the things I had dream I would the day I found out a baby would be joining our family.

Our God Is Stronger

The last little while has been a very hard time for us. Trying to decide if you should put your child through a surgery that isn't necessarily needed but might be something that makes this time that he needs to be ventilated easier has been a very hard thing for me. We have come to the decision that we think getting Deklyn trached and also getting him a g-tube will be one of the best things we can do for him right now, and I do not say that easily. Nurses, doctors, our family, friends and lots and lots of prayer have helped us come to this decision. 

I usually try to be as strong as I can, but lately, even though I know we are doing what is best for him, as doctors and other hospital staff come to talk to me about it my heart just breaks. This isn't what I wanted for my little boy and its not easy signing a paper that says you understand your child could die during this procedure. In December I had high hopes by May he'd be home, and I might not have been thinking rationally but I always want to believe the very best. But I am just happy that we have come to a decision and feel at peace with it, he's going to get to do so much more than he can with this way he's being ventilated now. It also means we are going to be able to do a lot more of his care, which is exciting but scary at the same time because we will have to learn a lot of things that I usually would't feel comfortable doing.

We've had a lot of great nurses with Deklyn and they have all been very encouraging and really helping me feel like, yes I will be able to do this. I know no matter what I would do anything for my little boy. I think the hardest part for me after the surgery will be to come and see him with these tubes going inside him. But I know just like its always been, it'll just take awhile and it will be something we are used to again. Those of you who are praying for us, please pray for Deklyn that the surgery will go well with no complications and he won't be in to much pain afterwards. Also for us that we will learn all things we need to and we'll have peace as he goes into surgery and seeing him after with his new, for lack of a better word 'equipment' won't be to hard for us. He will be going in for this surgery on Tuesday (May 15th).

Last but not least, I want to thank my wonderful aunt Tina for making me feel so special. She has entered me into a contest Walmart is having called Mom of the Year. There are  over 1000 moms entered already so I'd be very surprised if I was in consideration but I feel super blessed that my name would even come to mind, its very hard to feel like a mom when you really can't do the things a normal mom would and I'm sure lots of people can relate to that. You can see what my aunt entered here

http://www.momoftheyear.ca/mom/?mom_id=459 

Thanks so much for all of your support, thoughts and prayers for this Tuesday, and everyday!

Decisions To Make

Hello Everyone! Not terribly  much is new here, Deklyn had to go back from the neobar to tapes because the neobar really wasn't very secure. He got a good day with it and gave his cheeks a chance to heal a bit so that was good. He seems to be growing alot lately which is really nice to see! His body has most definitely gotten longer and his legs and arms seem to be getting there too! Even though he's still the weight of some bigger new borns it feels like my little baby boy has grown up a bit, and I guess by 4 and 1/2 months you'd hope he would have!

We've been faced with some pretty tough questions as  parents. At least its sure felt tough for us. When we started with the study, mostly everyone we talked to said tracheostomy's (where the breathing tube is put through a hole in the throat) were something they wanted to avoid and with all the HPP kids they had. A few days ago we were approached with the idea that a trach would be a very good thing for Deklyn. It all sounded great, they said they think he will be vented for months yet and with this type of venting it can become really irritating having something in your mouth all the time and in your throat moving around. Also the tape they put on his face, which has done some damage already.

 They say alot of exciting things like eventually when he is really stable getting to take him for walks, feeding him, if we are really comfortable with his care possibly taking him out of the hospital for a bit, lots of really really good things! At the same time they would do a trach they would also put in a g-tube (a feeding tube put in through his tummy directly to his stomach) so his face would be free, we'd get to do a lot more of his care and possibly some really exciting fun stuff all new parents look forward to doing with their kids. If he does need to be vented for an extended period of time but is really well enough to be home, he can come home trached so that was nice to hear as well. But at the same time, Sheridan and I had really high hopes he'd be off the vent by now and even home. So its hard to hear that things aren't going how you wanted, and no parent ever wants their child to go through a surgery. 

We feel we have come to a decision but please continue to pray for us. We want to do the very best thing for Deklyn, we don't want to go through with a trach because it will allow us to do more things we'd like to do, we don't want to not do a trach because we didn't want him to have to go through any surgerys. We are going to get a meeting with a bunch of people who can answer all our questions so I'm sure after that we will know for sure what we want to do. We only want to make our little boys life the very best that it can be, I know one day we will have him home but for right now we'll have to sit tight and with God's help make the right decisions for him.