It's OFFICIAL- NO MORE OXYGEN!!!

Today Eli went to the lung clinic for a regular 6-8 week check up, and we got some BIG NEWS... He is officially off of oxygen now!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  If you hear a lot of loud noise, cheering, clapping, shouts of joy... it's probably just the Gannons having an after-17-long-months-our-child-is-free-of-tubes-and-tanks-and-monitors-party :)!!!  (Well he still has the feeding tube in his stomach... but as far as breathing tubes and accessories, he's a FREE MAN :)!)

July 1st, this Friday, is Eli's 1-year-of-being-home-from-the-NICU-anniversary.. and the following day, July 2nd is he and Isaac's 17-month-birthday.  If you would have told me when he was born that we would spend the first year and a half (almost) of his life toting around O2 tanks and tubes and monitors, I would have thought, "Oh my..." But at that point in our journey, I was pretty clueless, so it wouldn't have really made sense to me what all that meant.

But after enduring all we did in the first 5 months of his life during the NICU roller coaster, and already having Isaac at home, who was still on O2 and monitors himself... we knew how draining it was to manage all of it.  So if you would have told me the day he got discharged from the NICU that he would still be on O2 for the next year, I would have probably burst into tears, thinking, "Are you kidding me?  I can't do that, it's too much... That's such a long time...!!!" 

But, by the grace of God, we did it.  Through a lot of prayer (thanks to so many of you who were praying for us!) we survived these 17 months.  If I'm going to be real, I have to admit that it's been really hard a lot of times.  It's exhausting to manage.  Especially when they both were still on O2, but even still when just Eli was the only one still on O2.  Our dining room wall was always lined with tanks, and we usually had a few more tanks dispersed throughout the house and our cars for "easy" (ha!) access.  Everywhere we went, a tank went with us.  We could never easily pick Eli up and take him even just across the room, without toting a tank along, too.  Eli couldn't even easily get himself across the room once he started "scooting."  He would go so far, and then that was the end of the rope, literally- the oxygen tube is only so long, so he could only scoot so far before he'd be out of slack. 

If we left the house, even for a short period of time, there's always that pressure to make sure you have enough oxygen with you.  "Is the tank going to run out?  Do I have a spare in the car with me just in case?"  Going somewhere overnight was quite the ordeal- that always meant you had to have multiple extra tanks, because 1 wouldn't be enough to last long enough.  And those things are heavy- even the "small" ones that are meant to be portable.  By the time you get the tank in the carrying case, strapped to your back, and then get a baby and probably a diaper bag in tow, too... you are carrying quite the load.  (It's no wonder my friend and massage therapist said my back and neck were full of knots...)  It was physically and mentally exhausting at times... honestly, most of the time.

So I am beyond thankful to be closing this chapter in our lives.  I love being able to pick Eli right up out of his crib in the mornings, without having to untangle all the tubes he's wrapped himself up in throughout the night.  I love being able to pick him up from playing in the floor, and take him right downstairs to eat, or get a bath, without having to pull or carry a tank behind me.  I love getting him in and out of the car with out strapping a tank to my back, too.  I love putting him in and out of the stroller, without having to put a tank in the basket underneath.  Most of all, I love that his lungs are healthy and getting stronger everyday, and don't need supplemental oxygen to be okay.  I've avoided a lot of situations over the past year, and declined invitations to do things, because I just couldn't fathom managing two babies and the 1 or 2 tanks that came with them.  So I am really looking forward to this new freedom and weight (literally) off our shoulders.



Look at that handsome, oxygen-free face...



"He gives strength to the weary and increases the power of the weak. Even youths will grow weary and young men stumble and fall; but those who hope in the Lord will renew their strength. They will mount up on wings like eagles. They will run and not grow weary. They will walk and not be faint." Isaiah 40:29-31

My health may fail, and my spirit may grow weak, but God remains the strength of my day. He is mine forever." Psalm 73:26

Thank you, Lord, for the strength you provided me over the past year. There were many, many times that I did not feel strong at all... but you gave me enough strength to get through each day. I praise you and thank you for that love!

And this same God who takes care of me will supply all your needs from his glorious riches, which have been given to us in Christ Jesus.  Philippians 4:19

Eli's Glasses

So, Mr. Eli got his glasses last Wednesday.  It only took him about 3 minutes at the optical store to figure them out and leave them alone.  At first he didn't really know what they were and just kept pulling them down off his nose... But once we were able to distract him enough to really look at us waving our hands around, I think he realized he could actually SEE, CLEARLY, not FUZZY and BLURRY, and after that he pretty much left them alone... and started looking ALL around the room at EVERYTHING!  Lights, signs, people... His little head didn't quit moving for several minutes because he was so busy checking everything out in the whole room!  Throughout the rest of the day and since then, it's very cool to see him engaging in things and noticing things that he never has before.  We can see him looking at things across the room.  And he now cries whenever I walk out of the room- before, I thought he was just really content... but really, I just don't think he knew I had left the room cause he couldn't see that far.  But now, he can see when I walk out, and he lets me know he doesn't like that and wants me to come back :). 

We, along with his doctors and therapists, are all very hopeful that this will really help his overall development start to take off.  He hasn't started crawling yet, and we think part of that is because prior to getting glasses he couldn't see past a foot or so away from his face... so why would he want to crawl to something?  He didn't really even know what was really out there in that blurry world!  Hopefully now that he can SEE, his gross motor skills (crawling, standing, walking) will all start to progress. 

He's done a great job wearing them so far.  The only time he really messes with them is when he's sleepy and wants to rub his eyes, or when someone new says, "Oh, Eli, I love your glasses!"  Usually when someone mentions them he puts one or both of his hands/arms up over them like he's embarrassed.  But we reassure him the he's very handsome.  The kids in our youth group and our preacher have all lovingly nicknamed him "The Professor."  He already has a bow tie, now we just need to find him a little tweed or corduroy jacket complete with elbow patches :).





Eli with his "Poppo"



Eli with my grandpa, "Papa"

By the way, for any parents out there searching blogs and websites like I did before we got Eli's glasses... He is extremely nearsighted (-10 left eye, -15 right eye).  His frames are MiraFlex brand, rectangular shape, "Milk Chocolate" color, with a matching band in the back that keep them on his head.  Anyone who I asked about frames for little ones like Eli, all unanimously suggested MiraFlex, rather than metal frames.  We are pleased with them so far.

Updates on Eli and Isaac, too!

Thanks to all of you who were praying for us and thinking of us last week with all of Eli's appointments. Here's a quick summary of what we learned:

First appointment was the swallow study, and it went GREAT!  Eli can now drink liquids by mouth again!  The speech therapist that did the study wants us to thicken the liquids slightly for about a month, and then wants to see him again for another swallow study to see if we can stop the thickening.  I was so proud of my little man- he took right to the sippy cup, like he'd been drinking from it all along!  I had just bought Isaac some new, bigger sippy cups... and I was thinking Eli could use the smaller ones that Isaac just graduated from... but, Eli likes the big one.  He looks so cute and funny drinking from it because it's really almost the size of his head!  But he loves it!  And so far it seems his favorite thing to drink is water.  He's only taking 1-3 oz of water or milk at a time, so we still have to supplement with the formula in his g-tube, so he doesn't loose weight.  But we are just so thankful to learn he can take liquids by mouth again!  And hopefully over the next few months we'll have him on full oral feeds and no g-tube feeds.  That's a very big goal... but we can dream, can't we?  And, we are talking about Eli Gannon here... the boy who consistently surpasses everyone's expectations.

Next we went to the NICU follow-up clinic for some developmental testing, and for Eli to continue to be a part of some special research studies due to him being a micro-preemie.  This was a really long appointment- we were there about 3 or 4 hours- I kept keeping track towards the end, so I didn't loose my mind.  We already knew that Eli is still behind in a lot of milestone areas, but the developmental testing they did confirmed just how behind he currently is.  The doctor suggested that we add weekly occupational therapy and speech therapy for him.  I'm glad for him to get the services and therapies that he needs to grow and learn and thrive... But he already has 2 other therapy appointments every week... Now it looks like we will have 4.  And I have to be honest- it makes me tired just thinking about it.  But, it's all going to hopefully help him catch-up and be the best that he can be... so we will do it, and we'll be as happy as we can about it.  Attitude is everything, right?  Eli is my best example of having a good attitude- no matter what, he's always sweet, and content.  I learn so much from this little guy.

We also learned about his muscle tone at this appointment.  His lower extremities all look good, and his arms look good- which were my areas of concern, so this was good news to me.  The problem areas are his stomach muscles and back/shoulder muscles.  He has low tone in his stomach, and high tone in his back/shoulders.  This is what makes him hunch over a little bit at times when he is sitting up- the weak stomach muscles.  And this causes his to have poor balance, making him not want to reach very far out to get toys, etc.

The next day we went to the eye doctor.  We learned that Eli's vision is very poor.  We already knew he was nearsighted, but this day we learned that his eyes are -10 (left) and -15 right.  Anything over a -6 is considered "severely nearsighted," so clearly, Eli's vision is really bad.  The doctor explained that things more than a few inches from his face are very blurry to him.  This also explains his poor balance and lack of interest in things that are very far from him... he can't see them!  So we ordered him a pair of brown rectangular shaped frames- the lower pair seen in the picture you see here.  They come with a matching strap that will help keep them on his head, and I think the strap is wrapped around the middle of the frames here, so the nose piece isn't actually that big... But anyway... they should arrive sometime next week.  The are a special, safe, durable type of glasses designed especially for kids.  The few friends I have with kids in glasses all unanimously suggested these (Miraflex band), as well as the 2 ladies helping us at the eye wear store.  We are very excited for him to get his glasses- we feel it will open up a whole new world for him, actually being able to SEE!  And that his development will really start to take off over the summer.

Also, we've had great success weaning him off of his oxygen since Saturday!  We are beyond excited about this and so hopeful that he really is weaning off for good this time!  (We had started weaning him off at the end of April, but he was sick for most of May and had to go back on with a heightened amount for a while.)  He's 16 months old, and he's been home from the NICU for almost a year... and I really just can't even believe that we might actually get to be O2 tank-less in our home!!!  It's truly a dream come true for the Gannon family!  I will update more on this (and post pictures) once we get official doctor's orders to be off of O2, and make the call to the medical supply company to come pick up all of the tanks and equipment, FOR GOOD... :)

Ok, don't want to forget about Isaac... because he's got some pretty big news of his own... He's WALKING NOW!!!  He's been taking 2-4 steps on his own for about a week now... But as of this weekend he can walk across the room- it's usually to get a toy or food that he wants :).  I'm SO proud of him.  Chris and I were lying in bed last night looking at pictures of him on our phones, from when he was first born... and we just can't believe that same baby isn't really even such a baby anymore...  We are SO thankful for his health and progress! (Ok, and maybe we are a little sad, too, at how quickly he seems to be growing up!)  Enjoy the video taken on Chris' iPhone this evening! ( Sorry for the poor quality...)

Important Appointments for Eli- Prayers Appreiciated

Next week we have a several important appointments for Eli coming up.  Wednesday, he will have a second swallow study done, now that he is able to sit up on his own (finally!).  If you remember (or never knew in the first place...), Eli failed a swallow study back in November, showing us that he could not properly swallow liquids (this is also called aspiration).  This is what caused him to have to get a feeding-tube placed directly into his stomach November 5th... and since then he has only been taking baby foods by mouth, no liquids.  And they told us then that we could repeat the swallow study once he was sitting up on his own, to see if he had advanced and matured enough to swallow properly.  So please pray that this is successful!  We would love to be able to offer him a bottle or sippy cup!  Especially since it's SO HOT outside- we worry that he's so thirsty often times.  We can put liquid straight into his tummy through the g-tube, so he doesn't get dehydrated... but, I know it would feel so good to him to get to have a drink in his mouth!  I just pray that he can swallow liquids properly now... and if so, that he will be interested in drinking from a bottle again, or a sippy cup.  It was early November 2010  that he last had a bottle by mouth.

He also has a tone check in the NICU follow up clinic that day.  They want to check his muscle tone.  At his last NICU follow-up clinic visit (12mo), the doctor examining him brought this up, and wanted to re-check him in a few months.  He could have a condition called "hypotonia," meaning "low muscle tone."  I think the doctor was suspicious of this because of his developmental delays, and specifically how he does not like to put much pressure on his arms.  And at the 12 month visit, he wasn't sitting up on his own, or bearing any weight on his legs either.  (Now he is sitting up on his own like I said above... And, he loves to stand up!  He smiles SO big and giggles whenever we help him stand up!)  Of course, he could not have hypotonia, and all of these issues (developmental delays, disliking pressure on arms) could just be solely from his prematurity.  He had multiple things going on with his arms back in the NICU days- several broken bones because of a lack of calcium in his diet, lots of IV's, and PICC lines... so it could just be sensory issues from all of the pain he endured.  And of course his developmental delays are from prematurity too... but we need to make sure there isn't something else going on on top of that.  Honestly, I've kind of put this part in the back of my head for now, until we have an answer.  I didn't want to spend the last 4 months worried about this.  That's usually how I've dealt with Eli's medical issues- I'm not going to worry till you tell me I have something to worry about.  There's plenty to deal with, so I'm not going to worry about what else could be wrong, till I know if it's something I do in fact have to add to the plate... It's one day at a time, one issue at a time... And we've made it this far!

Thursday he goes back to the eye doctor, and will most likely be fitted for glasses at that time.  I am actually very excited about this appointment, just because I am anxious for him to get glasses.  I really feel like it will help him continue to develop and meet more milestones.  We know that he is very nearsighted and doesn't have some of his peripheral vision because of the 2 laser eye surgeries he had in the NICU, because of the ROP (retinopothy of prematurity).  The loss of some of his peripheral vision cannot be corrected (unless they create some treatment or surgery to restore that in his lifetime...).  But the near sightedness can be corrected with glasses.  One of his eyes is also weaker than the other, and has trouble tracking as well sometimes- we are hopeful that the glasses will help strengthen his eye, too.  I used to say in high school, that I wanted a little boy that looked like the one in Jerry McGuire... Well, I think I'm about to have one :).

Clearly God has a plan for Eli's life.  No matter what answers we get on Wednesday and Thursday, God is in control and has His hand right on Eli...and me, and Chris, and Isaac...  We trust Him and know He will provide for our every need.  To God be the glory for healing that's already been done.  To God be the glory for strength while we wait on on answers and continued healing.

Psalm 66:20

Praise be to God, who has not rejected my prayer or withheld his love from me!

Isaac's 1 Year Anniversary of Coming Home from the NICU

Isaac has now been home from the NICU for a year.
June 1st 2010, he weighed about 9 lbs...
June 1st, 2011, he now weighs about 25 lbs!
What a difference a year makes!
All glory to God for Isaac's healing!
We are so thankful he's come this far in a year.
Isaac Franklin Gannon- We love you to pieces!

Isaac's 1st Car Ride... Home :)




Getting ready to leave the NICU



Just arrived at home, 1st time in swing

Whiteboard sign in NICU room on "Going Home" Day



Just a couple of days old...




First few days at home... 1st time to try out Bumbo seat




Isaac Franklin, 1 year after "NICU Graduation"



Daddy's hands on brand new Isaac