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! 

Counting Our Blessings

I don't have much to say this time, but we've had two pretty exciting events since my last post so I thought I'd let you all know! I was able to give Deklyn is very first bath in a baby tub the other day which was pretty exciting. Sheridan was not able to be there because he is at home now during the week, but he was able to experience giving him a bath this weekend when he came out here! Deklyn did so well, I was expecting him to not really enjoy it but from start to finish he never cried or made an unhappy face. He loved it! Here is a picture of him after his bath, happy and clean!

The other exciting thing we got to do was put him in a bouncy chair! He didn't know what to think of it at first, but he did get used to it. He was having a bit of a grumpy day, so I wasn't sure how he would handle it. At first he was crying a bit but after a while he closed his eyes and was pretty calm. Sometimes I think closing his eyes is his way with coping with something that is causing him stress. He would have them closed for a bit, and then slowly open them, look around and then close them again. But he did really well and was in his chair for a good hour!

A little update on the new tube issue. It sounded like it was done deal, they were just going to wait until he was bigger (whatever that means) or until he absolutely needed a new tube. And I was beginning to understand why, they really don't want to risk putting him in danger when he really is doing pretty good with this tube. At the end of today it was sounding like now they want to have another meeting to discuss it because the nurses are so uncomfortable handling him, and the nurses seem to think the way he is being ventilated is just a not a good way of doing things. But we will see I guess, I have learnt not to believe what they say is going to happen until it is actually happening!

My work place put on a fundraiser between all the staff for us and we were just beyond blessed by them! Honestly when they told me the plan for a fundraiser I wasn't sure what to expect, but am always amazed by everyones generosity and even just the thought of a fundraiser for us amazes me. All I can say is our God is amazing and has truly blessed us in a hard situation. He is looking out for us, and to any of you who are reading this and contributed to the fundraiser in anyway, thank you! You have blessed us in more ways than you know and I know you will be blessed for being such a blessing! Thank you never feels like enough, but I hope you all know I mean it most sincerely.

Happy 2 Months Deklyn!

Our sweet little munchkin is 2 months old today! Hard to believe but at the same time it feels like its been longer! 2 months of being in the hospital down, hopefully not to much longer to go!
Here is a picture of him from 1 month ago!

and here is one from today!

He has definitely grown which is awesome! I have seen a significant improvement in his limbs as well, in the first picture his arms are up high by his head but in the 2nd they are lower and I think they are getting longer as well.
We are having some issues, in my last post I mentioned how Deklyn was supposed to be getting a new tube and how it seemed to urgent but was never happening. Every morning they have what they call 'rounds' were all the doctors and nurses talk about each baby and what the plan is for them that day, or in the near future. Sheridan and I decided to speak up about Deklyn's tube issue, he had been just miserable for the past day and that day wasn't going any better. The doctor that day pretty much told us that he is being ventilated right now, all his numbers are good, he is fine and doesn't need a new tube right now. She didn't want to hear much of what we had to say but I told her how frustrated we were, being told how great this new tube would be for our son and suddenly being told he'll be fine like this. I also mentioned we were told not to hold him till he got the new tube, and she told me that holding him while on the respirator was a risk either way it didn't matter how small the tube was.

I was obviously not to impressed to here that, but I guess we're just starting to realize how some of these doctors operate. I was an obviously upset mom, wanting to help my son feel more comfortable and it didn't seem to matter. One nurse came to help us so Sheridan could do Kangaroo Care (Which was so awesome!) and she really encouraged us. She has had a sick kid in the hospital as well, and she told us not be afraid to say what we think is best for him. We know him better than nurses that work with him the most and we need to be is advocate.  She told us it didn't matter if we had the right words, or knew exactly what to ask for but we need to keep bugging them until we feel our son is happy. She also said we'd have to develop some thick skin (which could be tough for me) because we will start to see people rolling their eyes and make comments when we speak up but we need to do what we think is best for our little boy even if we aren't quite sure what that is.

I knew I really needed to hear that, it is hard when your up against a bunch of professionals. You feel like they should always know what is best, but the reality is they don't. It really feels good to know we have a bunch of nurses on our side that feel Deklyn needs a new tube and I'm not just imagining things. He has just been so much more irritable lately, and they have been having to bump up his settings because the tube is too small. I want my son to be able to start breathing on his own, and strengthen his muscles and this tube seems to be in the way of all that! If you want to pray for Deklyn, please join us in believing he will be able to get a new tube soon, and it will be in the best conditions.

While I'm at it I may as well add another prayer request!
I've been needing a little more help to stay positive lately... I know most people tell me they can't believe how positive I am about everything... but it does get really hard some days. Especially when I start to miss family and being home, it can be really hard. So for me I'd just like prayer that this time in the hospital for us goes quick, and to not get stuck on the things I can't change and to stay positive.
Thank you to all of you for your support, prayers and encouraging words.

One night, I was having trouble sleeping so I decided to read my bible on my Ipod. I turned it on and it went right to this, I found it very encouraging and I hope it does the same for anyone reading this.
Isaiah 40:27-31 (message bible)
Why would you ever complain, O Jacob, or whine, Israel, saying, "God has lost track of me. He doesn't care what happens to me"? Don't you know anything? Haven't you been listening? God doesn't come and go. God last. He's the creator of all you can see or imagine. He doesn't get tired out, doesn't pause to catch his breath.And he knows everything, inside and out. He energizes those who get tired, gives fresh strength to dropouts. For even young people tire and drop out. Young folk in their prime stumble and fall. But those who wait upon God get fresh strength. They spread their wings and soar like eagles. They run and don't get tired, they walk and don't lag behind.

Happy Valentines Day!

This last week has been a complete roller coaster! Mainly for the fact that Sheridan has gone back to work and it has just been hard adjusting to not having him here all the time. Its almost like reality hit when I had to be here all alone, it was much easier to handle when we were together. Just knowing family is farther away than normal, and not being able to see them just whenever I want can be overwhelming if I think about it too much. I'm sure it will just take some getting used too and it will be just fine!

Today was probably one of the most stressful days of my life! We have been waiting for at least 2 weeks now for Deklyn to get a new respirator tube put in. Of course it has risks like losing his air way and that can obviously be quite serious, so I've been kinda anxious for it to happen, but I've also been so excited for it because the new tube means he can do more and the tube he has in right now is too small for him so it's been creating some issues! They want to put this tube in through his nose rather than mouth, so he'll be able to use his mouth to suck on a soother and its more stable so he could go in a baby swing, and have a real bath! I haven't been able to hold him for awhile because this tube is so unstable they want to wait for his new one till I hold him again.

So yes, I have been waiting for this new tube to be put in! They've said a few times that it would happen and it didn't, but today it was really supposed! Sheridan even got the day off so he could come and be there for it. We waited till it was done to go back and see him and when we did, a doctor came and told us they cancelled it AGAIN! It was for good reason, they want to have an IV in just in case something would go wrong and they needed to give him drugs they had IV access but they weren't able to get one in him. But my heart just sank when he said that.. I was so excited to see him do normal baby things and now it kinda feels like it just keeps being pushed farther and farther away. You never know really how hard it is to not be able to hold your baby, give your baby an actual bath, watch him lay in a swing or bouncy chair, feed him, even change his diaper until you actually can't! Before I had Deklyn, and was just thinking about having kids I didn't really realize that those things can actually be a real blessing to be able to do with your child.

I am constantly reminded that I shouldn't complain though, my baby is here, alive and doing wonderfully! I have got to do so many things that I didn't think I would get to do yet! I know its just a short wait and I will get to do all the things I wish to do. The other day Sheridan and I actually watched a movie with Deklyn! Of course he was only awake and watching for maybe 15 minutes of it but it was just so fun to do something that we would be doing if we were at home. And the nurses here are just so thoughtful, for Valentines Day they 'helped' Deklyn make a card for us with his foot prints in it. They really do try to make things are normal as it can possibly be!

I know I say this alot but from all 3 of us, thank you to everyone who has done absolutely anything for us! I am always overwhelmed with everyone's kindness and how thoughtful everyone can be! We are so grateful for everything! You will be blessed for being such a blessing!

Prepare To Be Amazed....

Ready to see something incredible?? Check out Deklyn's latest x-rays!
Here is an x-ray from the day after he was born. His ribs are terribly thin and his chest is very narrow.

Now, after just 6 weeks of treatment is ribs are getting thicker and it looks like his chest is widening!

Here is his leg the day after he was born. There are just 2 very small bones.

and now again, after 6 weeks of treatment the change is unbelievable!

I knew this was going to happen, but I had no idea how fast it would happen! Of course we still have a ways to go but I am just so encouraged and amazed! Our God is just so amazing, I am so thankful for this treatment and I know without it my baby boy would not be here right now, or would not be very well off at all. Thank you to everyone who has been praying for our baby!

As if those x-rays weren't enough... here is just a short little video of Deklyn when he was 5 weeks old! Very alert and looking around, showing off his big beautiful eyes!

I hope you have been blessed by seeing his x-rays and this short little video! Its the least I can do for everything people have done for us! Thank you for continuing to believe with us for complete healing for our little boy!