Busy Busy Bee!

It seems like we have been on this journey for a long, long, long time. Reality is it has only been 19 months- minutes feel like hours, days like weeks, and months like years...The world seems to move in slow motion when you only get about 20 hours of sleep a week :)

Jackson's Tonsil & Adenoid surgery went very well, and he is recovering nicely. The Bronch (scope of airway) showed nothing of concern. They lasered off a small piece of tissue that had grown above the trach. Jackson has a normal sized airway and moving vocal chords!---which means 'structurally he does not need the trach tube...in theory.' He slept the entire day of the surgery which made me even more thankful for his g-tube. I was able to let him sleep while I loaded him with fluids. He was on a great pain medication that was given every 2 hours and rarely fussed. It is a pretty painful recovery for any kid who has a T&A removal, and we expected the worse since he will not take anything orally (like a Popsicle or ice cream) to soothe his throat, but he did extremely well!

Jack after having "Loopy Juice" right before surgery

So whats next?
After the surgery was over and we received the good news about Jackson's Bronch I wasted no time in calling our Pulmonologist to let them know how everything went. Jackson now needs a Sleep Study without his trach in place. First they will do a "Nap Study" during the day where they take out the trach for an hour or two while he is awake (if he naps it's just a bonus). If he does good with that he will then spend the day hanging out in the hospital without his trach, and go back to the sleep lab that same night for a full sleep study. During the sleep study they are looking for any signs of apnea and labored breathing. They will also take Jackson off of oxygen to see how well he does without it. (I suspect he will need it for a little bit after he gets his trach out) But who knows... this kid never ceases to amaze me! JUNE 6th at 8am we will check in and hopefully come home the next day trach free! There is always a possibility that he will not do well, and come back home with a trach... but we are not even going to put those thoughts in our head (or his!)

It has been such a busy month for Jack! He also had Strabismus Surgery today to correct his crossing eyes. The surgery was done by the same eye doctor who did Jackson's Retinopathy surgery when he was in the NICU. The surgery went very well and Jackson was back to him self within an hour! We should see the full results in about 4 to 6 weeks. There is a small chance that the surgery will need to be repeated, but his crossing was pretty mild and we do not expect that to happen.

He was so happy before surgery!

I feel like we have been running on 'Auto Pilot' these past few weeks. So much is happening I can hardly keep up with it all! Jack's therapies have been increased and we now have PT, OT, and Speech once a week. We were really excited to start back with his PT after taking a few weeks off. A new therapist came and assessed him and by the end of her first session he was doing things we have never seen him do! We originally had a "stander" on order for Jackson to use to help him learn how to stand, but he has once again amazed us and has learned how to do this all on his own. So we are now getting him fitted for a Gait Trainer that is essentially a glorified walker. It will help him to learn how to walk and build up strength in his trunk and legs.

We are counting down the days until his trach comes out... What a journey it has been. His bedroom is going to look so empty without all of his medical equipment... I can't wait! We are looking forward to ending this chapter in his life, and open up a whole new world of opportunity for Jackson.

"For I know the plans I have for you," declares the Lord,

"plans to prosper you and not to harm you,

plans to give you hope and a future."
Jeremiah 29:11

Something "Clicked"

It seems like this past week something just 'clicked' with Jackson. I can't quite put my finger on it, but something has definately changed. He is so motivated now, and WANTS to do his therapies, and play, and be active. He even started bearing weight on his legs! (he's still not too sure what they are for, but it's a start!) Today we were in Target just getting out of the house since it decided to stop raining. Jackson was actually looking at everything, grabbing at things, and smiling at people who passed by. He has always been a social butterfly, but he just seems to be coming out of his shell even more theese days! In the past Jackson seems to do something just to show us, and then not do it anymore... Like sitting, waving bye bye, putting his arms up when he wants held... but now he seems to be doing these things more and more often. He has even discovered that he has legs, and is bearing weight on them when we hold him up ....good boy! :) These are the little things that continue to give us hope that someday he will be a 'normal' kid.

Jackson met with his ENT this past week and he does need surgery to remove his Tonsils and Adenoids before we can move forward with getting his trach out. We had to wait 3 months to see this ENT and have known that this needed to happen since January! To our surprise they were able to schedule surgery for Next Tuesday (May 10th). It's more common than not with trach kids to have this procedure done. It is most likely going to be an Outpatient Surgery unless he has any issues that would make them want to keep him over night. They will also do another Bronch (scope of his airway) during the surgery to see if there is any narrowing or tissues that need to be removed before his trach comes out. 4-6 weeks after the surgery they will schedule another Sleep Study without his trach, and if he passes he will come home trach free! (keeping fingers crossed)

Jackson also has eye surgery this month on May 23rd. This is a less of a surgery and more of a 'procedure' as there will be no actual cutting involved, but still will go under General Anestesia. Hopefully after this no more surgeries! I am a little aprehensive about all of this. Jackson has had surgery before, but it's always scary and heart wrenching to watch your child go through. He has had 2 surgeries in his little life, and has done very well with all of them, so we are praying theese will be just as good.

I also can not get over how happy Jackson is. He is such a good baby...and always has been. He has taken everything with stride and rarely complains. I wish I had half the resilance he has! I have continued to see answered prayers, and miracles happen within this precious little boy. I thank God every single time I see a smile, a frown, a tear, a poopy diaper, and for every single breath that Jackson takes... It's so hard to believe that he is 18 months old. I have watched him grow and develop in ways that not a lot of mothers get to experience, and although it is a hard road It makes every single day just that more special. He is alive, he is happy, he is healthy... Thank You God!

1 Year HOME

It has been one year since we packed up Jackson (and all of his equipment) and strolled him out of the hospital for the first time. It was a surreal moment as the doors opened and the wind blew across Jackson's hair, a tear fell from my cheek and on to the ground. I remember as if it were yesterday. One of our favorite nurses Janet, helped us get Jackson down to the car. The sun was shining so bright and the air was crisp, but nothing could be felt but pure joy in that moment. I rode in the back seat with Jackson while Nick drove us home as a family for the first time.

Some of our favorite NICU staff at IU North

Although we were excited beyond belief we were also just as scared. Here we were, taking our baby home for the first time after spending 6 months with a Doctor or Nurse just footsteps away. Now we were doing it all on our own... Well we must have done something right because Jackson is still here with us, and is better than ever! We have had our share of up's and down's, and a few short trips to the ER, but I would not change it for the world. Having a miracle like Jackson makes you realize how truly special it is to have a family. I would have never considered being a stay at home mom if it were not for Jackson!

We had a wonderful day today to celebrate. It is the simple things that make us happy. We went to Starbucks, and then came home and snuggled on the couch, although he is NOT a napper! I will never take for granted just being able to pick up Jackson and hold him whenever I want. We didn't get to hold him for the first time until he was 2 months old... in retrospect he was not even supposed to be out of my tummy yet, but it was the most heart breaking feeling ever. That first snuggle meant the world to me. He weighed a little over 2 pounds, and was still on a vent. The nurse placed him on my chest with his feet tucked down my undershirt. He felt so weightless... like I was holding nothing but a blanket. But inside that blanket was this precious gift, that I now can call my little chubby 24 pounder!

In pure Jackson style he decided to end the day with a Bang! I took him to my mom's house while I was leading our youth group in a bible study at church. She has watched him several times for us, but has never taken him anywhere without me. We decided that she was going to take Jackson to church with her, and drop him back off at home with Nick and I after her service was over. Like always, Jackson had other plans. His g-tube got pulled out while he was at church with my mom, and it was NOT going back in. So we ended up in the ER where they finally were able to get the tube placed after numerous attempts. He was a trooper though and was all smiles when we were on our way home. I think he just wanted to celebrate his 1 year homecoming with all of his friends at the hospital!

Spring Fever

Having a baby who is medically fragile AND a preemie is a doubble whammy...adding a trach to that makes the months of September through April seem like they will never end. The common cold can quickly turn in to RSV in a "fragile" child. RSV is what we have been avoiding since September by staying inside, not going anywhere but the doctor's office, and even limiting the number of visitors to our home. We have been to church a few times, but I dont need 2 hands to count how many times we have left our home since September. Luckly it WORKS. Becoming a "hermit" and avoiding public places has kept Jackson healthy! A few weeks ago he got his FIRST cold at 17 months old, and it was gone before we knew it! Unfortunately he gave it to me and it is still lingering.

We had a check up with a Developmental Pediatriction on Monday. We have only seen this Doctor one other time and that was 9 months ago. She said that Jackson is making progress, a bit on the slow side with muscle tone, but it is still progress. She said that his social skills are right on track, and  he has great "fine motor" control (playing with toys in hands, holding his feet, waving bye-bye, etc.) We are working on "gross motor" control (sitting, bearing weight on his legs & arms, etc.) which seems to be the part that is lagging behind. It's not abnormal for preemies this early to have delays, and she wants to give him until the age of 3 before we start talking about a Cereberal Palsey diagnosis.  He is not the "typical" 25 week preemie, and has every right to take his grand ol' time.

Jackson has been doing great with his weight gain weighing in at 23 pounds (a little too good) and has officially been switched to a BIG BOY formula! He seems to be tolerating it very well, and it even tastes good too (although he doesn't taste it when we feed him via G-tube). The biggest perk being we don't have to mix formula any more, or carry around ice packs trying to keep formula cold. He was put on a bit of a diet after gaining 7 pounds in 3 months, and extra weight is just going to make it harder for him to learn how to use his muscles!

Waiting for the doctor...this smile didn't last long!

We got a dose of warm weather and enjoyed 4 days in a row outside! Unfortunately mother nature has a mind of her own, and it's now 36 degreese outside and we are back to playing in the house. Spring will come soon enough and we will be on a roll! We have LOTS of outdoor time to make up for!

The "Aunts" Come Marching In!

Friday night we packed up and headed to Cicero! Jackson is 100% back to his happy self just in time to see Aunt Betsi & Aunt Susan! Wherever we go Jackson is inevitably the life of the party and Nick and I are just "escorts." :) After a fun filled evening we were sure Jackson would come home and tucker out. He fought his sleep the entire ride home, and crashed as soon as he was in his crib!

We are resting up for another big week next week. Jackson's Synagis shot is on Monday... only 1 more after this one, which means we have ALMOST made it through Jackson's 2nd RSV season! (fingers crossed). Then his therapies (PT, OT, and Speech) are back in full swing after taking 2 weeks off while being sick. Hopefully Jackson will be up to it (more like I hope I am up to it!)

 Jackson loved lounging with Aunt Susan. He was all smiles!

 Aunt Betsi and Grandpa Jim move right in when Jackson offers up a free head massage!

His new favorite thing to do...daddy's too :)

Therapy Jargon

It's been an interesting morning here at our house. Jackson slept through the night for the first time in 7 days! I really wish he could tell me when he is going to do that so I don't stay up all night waiting for him to wake up :) Jackson's OT came to the home as scheduled to do his therapy, and we talked about the dreaded but now almost unavoidable topic among his therapists... Cerebral Palsey. It's a very broad term for all different kinds of developmental delays and brain injuries. With Jackson being as premature as he was the risk is much greater. Even though he did not have any brain bleeds in the NICU, he still has some "preemie" damage to his brain, and we have always known and expected that. The hardest part is the unknown... Jackson is now 16 months (13 adjusted) and still not sitting on his own. After months of his therapists chalking it up as "prematurity" they are now saying that there is an issue that goes beyond just being a preemie.

We talked about how far Jackson has come... Don't get me wrong he has come SO far! And continues to hit his developmental milestones...just on his OWN time. The good news is that he has not regressed at all, and he is doing everything in "order." The therapists are concerned with his muscle tone. Most preemies have both high and low tone, especially in their arms, legs, and trunk from gravity working against them while they are still developing in the NICU. Over time with therapy these things start to resolve and muscles become more "trained." In Jackson's case the tone issues have shown little progress, epically in his trunk (abdomen). Our therapist has suggested that we talk with our doctor to see if we need to get a Neurologist's Opinion.

Because Jackson's background is a little more complex than most preemies there is a lot to take in to consideration when it comes to his development. He layed in a hospital bed for 6 months, with wires and tubes all around him. He was poked and prodded, nearly every touch was a "bad" touch.  Then he came home with all of the wires, and tubes, and machines, and very sick lungs. He was on such a high dose of steroids for such a long time that his bone density and muscles were weakening with every dose.. Over time the dose was weaned, and he has now been steroid free for 6 months, although the Doctors said it could take up to a year for them to be completely out of his system. This is why the doctors do not seem to be concerned with his development at the time.

All I know is that no matter what Nick and I will love this little boy with everything that we have. His smile lights up the universe! Jackson is such a miracle, and is teaching us new things every day. I  have mastered the art of how to stay awake for 2, 3, 4 days straight without even thinking about it. Nick and I have learned to love in a way unimaginable, and how to embrace the things that are out of our control. In Christ all things are possible. I will live by Faith and not by sight.

Year ONE

One year ago...52 weeks ago...365 days ago...life as we knew it would change forever. At this time last year Nick and I were kissing Jackson good bye as he was rolled in to surgery. Our son was nearly 5 months old, and had never left his hospital bed. Decision making that ultimately effects the quality of life for your child was "new" to us. It was scary, sad, and a big realization that life as we know it would never be the same.

Tracheostomy.
We read all of the pamphlets, books, and instruction manuals on how to "care" for a trach...  It didn't sound too challenging. What they don't prepare you for is the mental toll it takes on you caring for a "sick child."

Jackson on his way to surgery.

The procedure itself went very well. We were told it could take around 3 hours to perform the tracheostomy, g-tube placement, and ingunal hernia repair. Just an hour and half later Jackson was back in his room recovering.

Jackson, a few minutes after surgery

As much as I would like to forget that day and all of the emotions, tears, and anxiety that came along with it, Jackson would not be here today if it were not for this procedure. God was watching over him. His prognosis when we left the hospital was poor... he was sent home to be "comfortable"... He sure showed them! Today 1 year later his prognosis is Excellent.

I would love to type more and elaborate on the entire day, but it's making my head hurt just thinking about everything that went on. Some days it feels like yesterday... and other times it feels like an eternity. God Speed.