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!

Nothing But Good News!

As I always say, Deklyn is doing awesome! On his 6 week birthday they took some x-rays for the study and all I can say is I am amazed... I had no doubt Deklyns bones would grow but I didn't know we would see such an incredible change in just 6 weeks! Sorry to hold you all in suspense but we want to show our family the x-rays first so as soon as that is done I will post them on here :) Believe me, it is something to be excited about! You don't see doctors get excited much, but when you hear how amazed they are you know its good!

There is something they call Kangaroo Care in NICU that most mom's get to do. I honestly tried not to think about it a whole lot because I thought I wouldn't get to do that for months yet! I saw other mom's do it and I just couldn't wait for my chance! This afternoon I went back to NICU and walked over to Deklyns bed and his nurse asked me if I'd be interested in doing Kangaroo Care and I almost fell over! I said "Of course!!" and as long as everyone felt it was safe for Deklyn I would love to! She told me everyone was on board and if I wanted we could do it in a few mintues!

The nurses told me not to worry if he didn't like it we would try again another time. He's been on his back since he was born so this was a big change for him! I was also concerned about something going wrong and him losing his tube or something but we had all the right people around to help in case something went wrong. I got to picked him up for the first time without anything underneath him and bring him to my chest. He absolutely loved it and I was able to sit with him for over an hour like that!

All the doctors and nurses were so proud of him and told me this can be a regular thing! Our little guy is just amazing us every day with his improvements and how he handles new things. He is one tough little guy that is for sure! I can't wait for when he is older and I  can tell him over and over again all the things he went through and how much God helped him and us through it all.