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!

3 Months Old!!

Our sweet baby boy is 3 months old today! What a journey it has been, and there is so much more to come. We've had some ups and downs since my last post (as usual). Deklyn had a major lung collapse, which later made sense as to why he had been so irritable lately. They had to put Deklyn back on the jet ventilator (this is the ventilator he was one when he was born, a very gentle way of ventilating) which they hoped would open his lung back up. I was pretty upset, although I knew this step backwards was going to help him no one likes to feel like your moving backwards rather than forwards. He also hated the jet when he was on it before so I was not looking forward to seeing him so upset, but they have him on medication to help keep him calm and settled.The change seemed to help significantly but after awhile again it collapsed. We are not sure why, there could be many reasons but tomorrow he will have been on the jet for a week, they are going to do some x-rays and tests and if all looks good he should be going back onto his previous mode of ventilation.

On an exciting note, Deklyn has finally been able to be on his tummy! He absolutely loves it! He gets very upset when moved back onto his back. He's been breathing alot lately which is an awesome sign that things are moving in the right direction! We will also be making the move to PICU sometime soon. I am looking forward to it for many different reason. We will have our own room so noise won't be much of an issue anymore and it will give us so much more privacy and space! They also have much more experience with babies like Deklyn there. I'm really going to miss the nurses in NICU but I know this is going to be a good move for us. They also say Deklyn will be able to get a new tube (yes again haha) in PICU that should help with his issues of his tubes getting to small for him, and when he has that we can start changing his ventilator settings and watch him breath more on his own and eventually move to new forms of ventilating that don't involve a tube down his throat!

We had an article in the Winnipeg Sun that can be read here and it was also in the Red River Valley Echo (our home town paper) they are exactly the same article but here is a link to that one as well.

Prayer requests for us right now:

Deklyn's lung will strengthen and stop collapsing

We will be able to move to PICU soon and that it will be a great change for us

Weening down Deklyn's medications for pain will go smoothly

and Continuation of bone growth

Thank you for your thoughts and prayers!

 

New Tube!!

For those of you who have been faithfully reading my blog, you will be happy to hear on Friday Deklyn finally got a new ventilator tube! They got an IV on him Thursday morning which would be the main thing he needed for a tube change. They wanted to do a scope of Deklyns throat to see how it is structurally, so they called Ear Nose & Throat (ENT) to come and it shouldn't have surprised me, but the tube change went from happening in the next hour or so, to the next day. We prayed for his IV to stick until then and it did! 

Amazingly the tube change did happen the next day. The doctor explained the risks to me, which were pretty scary risks, but I knew this change would go well and be the best thing for him. It really didn't take very long and we were told it had gone extremely well, better than anyone could have hoped that it would! His throat looks great, has a bit of irritation spots but that is to be expected after being ventilated that way for so long! Some of you may be wonder if his new tube is in his nose, cause we were told that would be a great option for him. After lots of discussion it was decided having the tube be in his mouth again would be better for him in the long run then the damage it might do if it was in his nose.

So now that we are over that hurdle, we are now facing some new issues. We are not totally sure what is going on, but Deklyn has been working very hard to breath. We want him to try but at the same time he is working himself so hard he is getting very irritable. He has had a very bad fever today (which has come down) and he has been having the same spot in his lung collapsing. Many different things could be going on, he may have an infection, his fever could be related to the collapse, we not sure exactly how he feels growing bones so the fever and irritability could be related to that. There are just so many things to consider but it is just so hard watching your child so upset, you can tell something is hurting him and you can't do anything to help him. 

Those of you praying for us, I would really appreciate prayer that either whatever is bothering him will be gone, or the nurses and doctors can figure out what is bugging him and fix it. 

On a happy note, Deklyn is growing! They still look funny, but his arms are not so tight and close to his body. They have much more mobility and and slowly getting longer! It is just so encouraging to see!

Thank you to everyone for your support, I feel like Deklyn has so many people that love him, are praying for him and cheering him on in this journey. It is really hard some days, especially days like today when you just want this whole experience to be over and take your baby home. We can feel your prayers and love. Thank you!

A Chance to Reach Out

Deklyn, as always is doing great! He is such a trooper! A few days ago he was very unhappy, I had never seen him so up set and I could do absolutely nothing to settle him. He also had quite a high temperature. I asked the nurse if he could have an infection, she thought just because he normally is quite warm she wasn't sure but we sent away some test and it came back he had a respiratory infection. I wasn't happy to hear that, but glad we figured out why he was so upset and they seemed to think we caught it early which is always awesome! Since he started his antibiotic he has been doing so much better, and from more tests being sent away the infection seems to be getting better. 

Today, Deklyn became a tv star... haha! We did an interview for CTV news which was shown today, if you missed it, you can see it here. They didn't show a whole lot of what we had to say but they will be showing it again this weekend on the national news and I'm guessing they will show a little more of what we said. Deklyn did so well, he was actually quite fussy before the interview and as soon as the camera was in his face he was calm and happy just looking around! We are always shoving our cameras in his face so I guess he's used to it!

I didn't really want to do a interview for the news, simply for the fact that I didn't want to see myself on tv! But when we were asked to do it, I thought back to the time when I was 20 weeks pregnant and found out that my baby most likely had HPP, I googled HPP and found a little boy named Gideon (who is mentioned in the video) and saw an interview they had done, and also a video that they made. Just seeing that another family was going through something that I was about to go through and that he was alive and thriving! It gave me so much hope after being constantly told my baby was most likely going to die. If that interview we did would help just one person, like the interview with Gideons parents helped me, thats all that matters to me. 

Something to get excited about... tomorrow is Deklyns 2nd medical survey where they will do more full skeletal x-rays, blood work and stuff like that. I am mostly excited to see the x-rays and see how much better he is doing since the ones from on the 1st of February! They also would really like to get an IV on him, they tried earlier today and failed but they were possibly going to try tonight and tomorrow morning, just because they do need to get some blood for the tests they need to run and also when he has the IV in they can change his tube! Which would just be a huge relief for that to be over with! So if anyone wants to pray for them to get an IV in easily that would be great!