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.