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.

Deklyn is 4 Months!

Again... Sorry that it has been a while! Deklyn is doing pretty good. He is still having quite a bit of lung issues, I know every child is different but we've been told with other babies in this treatment in  the 4 to 5 month stage was when they seemed to see good strides forward so I'm really hoping and believing we will see that. We were told if this month doesn't go like that for him we are going to have to talk about issues he may have related to his small lungs and whats in his future. His lungs are just so small they aren't sure how things are going to go there, but we are just believing Gods going to work huge in this area for Deklyn in this next little while. People who are praying for us, we would love for you to join us in prayer for his lungs to strengthen and grow so we can get him off that ventilator in the next month or 2!

As you can see in the picture above, Deklyns lost the tape and has got a neo-bar holding his tube! His face was getting so rashy from the tape coming on and off again they switched to this in hopes of his face healing up. Its really nice to see his top lip and him moving his tongue around! 

This evening we went to the "be my hero event" capital campaign, we were asked if we could share a little of our experince as Dr. Greenburg (head of research for HPP) was going to be speaking there. Its kinda like a fundraiser for research.  I really didn't know what to expect but really wanted to go, we have been so blessed by research and if we can help fund raise I really wanted to. We get there and see our names are in the program as 'special guests', we weren't expecting us being there to be that big of a deal! Everyone was dressed really nice, I had never been to such a fancy event before so we really felt out of place but it was actually really fun. Not to mention the food was amazing!!

 I do know how lucky we are, but it just really hit me this evening at the event. Dr. Greenburg was showing pictures and video of the previous babies treated and she got to Deklyn, mentioned that he is the worst case they have seen and showed his first x-ray. Even though I've seen it before I couldn't believe how bad it was, virtually nothing considered bone in his entire body. Dr. Greenburg went on to say how his x-ray looked just like the x-rays of previous babies that died shortly after birth from HPP before this cure came about. It really just hit me and I thought why us? Not that I'm not incredibly grateful that it is us, I just felt very humbled that we get to experience our little Deklyn grow up, take him on trips, go for walks with him, enjoy watching him as he learns and explores.

I have a little heart warming story to end off this post. A few weeks ago, a nurse from NICU approached me and told me that her son's (who is in grade two) teacher started quilting and the class wanted to make a quilt for a child in the hospital and she thought we could be the perfect candidate for this. So the other day the teacher and 2 of the kids from her class came to deliver the quilt and it was just so amazing. Each child in the class made a special patch for Deklyn. The teacher said her idea was actually just to make a quilt for the class but the kids said they wanted it to go to someone and they were all very excited that it would be going to Deklyn. The 2 kids even wore dress shirts and ties because they wanted to look good for Deklyn. I just thought it was so incredibly sweet, and I'm just amazed with how people are reaching out to us. I never thought I'd be the one being reached out to.

To Be A Light In The Dark

This post isn't really an update.. it is more to share my heart and how I am feeling lately. My heart is feeling very heavy today, I can't quite put my finger on what exactly is bothering me. Deklyn is doing fairly well, his lung is still collapsed and hasn't really made much improvement but he has been really content lately! I've really gained a new perspective on things since our son was born. I do have my days where I am very sad and all I want is to take my son home and for things to be, as we see it 'normal'. But often my heart isn't hurting for myself, or my family. Its hurting for the ones around me. I was talking to a mom as I left the hospital today, she didn't tell me what was wrong with her daughter but the hurt I felt coming from her eyes made me feel an incomprehensible compassion for someone I had never even seen before. I asked her how long they had been in the hospital, almost as if she was in pain she said "It will be a week tomorrow" In hopes of giving her a bit of cheer, and to know she doesn't have it the worst I said "Oh, I know its very hard being in a hospital. We've been here for almost 4 months now" I'm not sure if it helped, but I told her I hoped her evening would be better than the morning she had and we parted ways.

There is really nothing I want more than to make a difference and I believe with the situation I am in I can. Hurting people want something more, and if I can show them love with a smile or even just small talk I am more than happy to do that. The other day as I was leaving the house to go see Deklyn a young girl and her dad came and went to go see the woman in charge of the house. As they walk in I hear the dad say "Hi, this is my daughter and this year for her birthday instead of gifts, she asker her friends to bring money to donate to the Ronald McDonald House" I was amazed... when I was a little girl I loved my presents way to much to ever even think of something like that. Many of us adults wouldn't even do something like that. 

Days like today, I feel so out of strength. I remind myself of how things could be much worse and how lucky we are. I can't imagine what some families are going through. If anyone would like to pray for me, please pray that everyday I be completely open to what God has in store for me that day and to keep my mind on what is important. I know God can use me where I am, and I don't want to leave here feeling like I could have done more. Please pray that I would be a light in a place where lots of hurting and lost people are. 

I'll leave you with my latest favourite picture of Deklyn... he sure knows how to let you know how he's feeling even if all he has is his eyes to show it with!

New Room For Deklyn!

Sorry to all you huge fans of my little boy! I know its been a long time since I've posted, my laptop hasn't been working properly so thats made it a little less easy for me to have time to make posts. Quite a bit has changed since my last post. Deklyn is now in the Pediactric Intensive Care Unit (PICU) We moved there last tuesday so we have almost been there a week now. The change has been amazing for Deklyn and us! Deklyn now has his very own room, so we have much more space and there is a tv for us to pass by the time a little quicker haha!

When we first got there the change in Deklyn was amazing, I wasn't expecting the move to go terribly smooth but it really did! He's had a tempature for quite sometime now and almost the instant we got in his new room it started to go down. He was also very content the first few days there and his heart rate was amazing compared to in NICU ( normal was anywhere from 130-160 first few days in PICU it was anywhere from 115-130) We also got to put him in his swing for the first time (because we finally had room to use it) and he just loved it! After waiting close to a month in NICU for a new tube for Deklyn, the 2nd day in PICU they got an IV in him and got him a new tube. He had quite a large leak again and they felt a new tube would help his collapse issues and start getting him on the right track for breathing on his own. That day his collapse totally corrected its self! It really felt like this change was move us in the right direction (and hopefully fast!)

Now just a week later, he's not doing quite as good. I still feel this change was the best thing for him, but he's got a tempature again, heart rates high, and right lung is completely collapsed again. I'm not terribly concerned, I know this is just another bump in the road but it sucks to see him doing so well and just a few days after back where we started. I spoke with one of the doctors and she said the collapse is something that should just correct itself over time as his ribs and lungs get stronger but right now we'll just have to keep him comfy and happy as he gets stronger.

Well thats pretty much it thats new for Deklyn right now. The change has been wonderful for him and us, although its tough saying goodbye to the staff and families we've gotten to know in NICU. We are just tring to be patient and wait for the day we can bring him home. It can be pretty overwhelming some days but trying to stay postive and not thinking about the future, thats what helps me get through on the hard days. If anything I know this siutation will help me to never take forgrated the little things in life that most people don't even notice that they get to do. Just being away from my husband each week and seeing him again on the weekends has renewed my appreciate for him. I feel like a totally new person than I was before I was pregnant with Deklyn, I would say in almost every way its been good changes.

People who like to know what they can pray:

Strength for Deklyn's ribs, that his lung will stop collapsing and be able to heal

Peace & Patience for Sheridan and I as we wait

Also, strength for us as we go through the hard days, I know that there are more tough days ahead and as we go through them our hearts hurt for our little boy and the dreams and hopes we have for him

I also want to thank everyone of who has helped us out in anyway, in the past few weeks we've had lots of things dropped off at our door and if you have done that please know you have blessed us greatly!