Saturday, April 3, 2010

Week 34: Changes & Surprises...

So Ayden's last airway surgery went well but he has unable to let go of his oxygen and so he was kept until Wednesday evening rather than being discharged the next day. He is now being watched by the pulmonary doctors at Cincinnati and is back on oxygen. He is back on 1/8th liter and seems to be much more comfortable breathing than he had without it. Although we loved not being attached to wires and such we always knew in the back of our minds that he needed just a little bit of flow. He always just seemed to be working way too hard. This transition has been quite hard as now when it is just me and Ayden home alone I have to find someone to help carry the concentrator down stairs or be confined to our bedroom all day and go stir-crazy. I have a feeling I will be having many stir-crazy days to come!....Meanwhile, Ayden doesn't mind being confined to a room with me. As long as he is being held or talked to he is perfectly content.

Upon Ayden's arrival back at home this week he has begun to smile and coo and has even chuckled a time or two in response to our voices and touches!...It is freakin amazing!...I have to admit I felt as though he was never going to show any signs of happiness. Although he smiles for me a little, he smiles more for others tho. I still seem to be the only person he clams for though. I just wish he would show the happiness towards me more rather than just showing the comforting affects.

Ayden also went to see the Easter bunny this week because when he was in the hospital the bunny neglected to come to his floor :-(....Of course the photo we got from the mall was horrible but at least we have one to show later. He made the man in the costume very nervous as he coughed and began to act as though he was going to throw up...needless to say, the photo was very awkward looking to say the least!

Another amazing thing that amazed us this week was geared towards Ayden's vision. Of course we have heard time and time again that he would be blind and all we could hope for was for him to respond to light...Tonight before we were going to put Ayden to bed A.J. was playing with him a bit and trying to get a response by playing with his binkie. Instead of following it according to the touches he felt on his face, Ayden tracked it with is eyes from one side to the other! At first we thought it may have been just a fluke or a coincidence but he followed it another 3 times with his eyes and a 4th and 5th time by opening his mouth and turning his head as it passed by as well. It seemed as though he was thinking "where are you taking it?...It should be going in my mouth!"....It is still unbelievable and I am still in awe by it but we are trying to not get our hopes up too high about it....It just seems too good to be true!

Hopefully this next week continues to bring as many happy moments as this last week has!....We are just so giddy with excitement!

I have lots and lots of photos to share but no time to post them now...Just thought Id post a quick update & share our excitement!


  1. ooh! What good news about his eyes! Maybe he'll have sight??? I hope so. Happy Easter!

  2. What a sweet little boy! I can only imagine the trails you have been through with this journey. I have been following your blog for quite some time now and I am amazed at your strength. My little Paizlei was born 2 months early and I thought we had enough trials with the 3 weeks she spent in the NICU. I could not imagine going through everything you have gone through. Your Ayden is obviously a strong little guy. He has overcome so much in his tiny life. With today being Easter, we have so much to be grateful for, as I'm sure you are reflecting on that yourselves. I pray that Ayden's following his binkie isn't just a fluke and it's an amazing Easter gift to your family. Happy Easter and here's to an amazing week!

  3. So sorry you have to tough out having oxygen. It does get stir crazy especially when you get confined to one room. Hope you get a schedule worked out for it. It will really help you to cope. I know I was stuck in our bedroom for four months before we got an arrangement worked out where I could be downstairs during the day. So glad you are enjoying your little man at home. Soon he will only want you. :-) That just comes with time.

  4. That's a bummer about the oxygen. He'll get over it soon enough, though, I'm sure. Ayden's such a trooper!

    It does stink to be confined to one room! We were that way for a few weeks with Chloe. But we did have the D-tanks and could move her to the living room and just use a tank. We also got 25 feet of tubing ( plus her 8ft canula tube) so we eventually moved the concentrator out of our bedroom and halfway down the hall to the living room. Now the tubing reaches both into our bedroom and into the living room. Good luck figuring something out. In the meantime, enjoy cuddles with your little guy :-)

    And AWESOME about seeing his binky!!

  5. I'm so happy that he's doing well! The sight news is amazing. He's also very, very cute (you knew that). Yikes, moving the concentrator, I can't imagine. Makes me grateful to live in a one-level apt. Can you have a big tank downstairs and leave the concentrator upstairs? Or vice versa? I'm sure he'll be off the tube soon enough.

  6. His vision news is so very exciting! Happy happy Easter! I hope he comes off that Oxygen super soon, for all of your sanity!