Happy 6 Months To One Amazing Boy

These last few days have definitely been the hardest of our whole stay in the hospital! It all started on Fathers  Day, It started off on a happy note where we got to see a family that has stayed in the hospital quite awhile as well go home, of course we were sad because we will miss them but so happy that they get to go on and enjoy parent life as you would expect it to go. We went to go see Deklyn and I got Deklyn all ready to present his very amazing daddy with his Fathers Day gifts.

Everything was going well he just seemed unusually pale. Later that day we came back and he literally look like a fish out of water, he looked as though he was gasping, he was pale, cold & sweaty. His eyes did not look like Deklyn's eyes. Very frighting for a mom to watch, eventually it got better and he settled down and I thought it was probably just a one time thing. The next day it got worse, it would start of with him looking like he was gasping and then he would turn blue and go completely limp. The nurses would have to bag air into his lungs and suction him and eventually he came back. At first they thought it was a snit (basically a temper tantrum) but as these events kept happening it became more apparent that Deklyn was in major distress and frantic.

These events were happening several times a day, and it was very unsettling. If you've ever watched your child gasp for air and turn completely blue you know how absolutely terrifying that is for a parent, and if its happening over 5 times a day, thats just about enough to make you go completely crazy. I felt like I was watching everything happen from outside my body, I couldn't do anything to help and I was so scared I would lose my baby. Yesterday on Deklyn's 6 month birthday they decided to do a bronchoscopy where they put a small camera down his airway to see if they can find anything wrong.

They found that just past the trach, his trachea narrows for a short ways and then goes back to normal size. This could be because it didn't form properly just like his bones, or many other reasons but as of right now they don't think it will mean anything serious for him in the future. But right now they think whenever we re-position him the narrowed part of the trachea might be collapsing causing him not to get air and therefore turning blue. Some of the time it may be snits, but its very possible that this is the cause for his blue spells. So right now we are just sitting tight and they are getting him a new trach that will go past the narrowing part of his trachea and that should hopefully fix the issues we've been having.

So we have now officially been in the hospital here with Deklyn 6 months, it really hasn't felt that long. But I also feel like I wouldn't be able to handle another 6 months of this but I never thought I'd be able to do what I've done already. Alot of the things we hoped and believed for didn't happen, but the most important one did and that's that we have Deklyn here with us alive, and showing us that one day we have a possibility of taking him home. Were just going to have to wait and see when that day will be for us. This has definitely been the hardest 6 months of my life in every way, but we take it day by day and keep believing that one day we will have our baby home, he'll be able to do what any other kid can do and he's going to have one amazing testimony!

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"