Yesterday officially marked the final day of OT (occupational therapy) for Joshua. It was only his second, or third session, but he no longer needs OT! He has reached every milestone that he should by 18 months & then some (he's 17 months right now). If anything he's developing too fast for my liking, I want him to be a baby forever. Way to go little buddy!
That is right, one year ago today Joshua had his second open-heart surgery, the Glenn. It was a rough one for Joshua (as well as the whole family), but as soon as he was fully recovered we had a new & improved baby on our hands! We were told to expect a 7-10 day recovery...uh, not quite! 6 weeks & a pacemaker later we were home free!
Joshua 3 days oldJoshua today
I am not going to lie, one of the things that made me nervous about Joshua's condition was the fact that he'd need daily medications. Most people don't give it a second thought- sure the child cries- but they need it, so they get it no questions asked. Josh has always gotten his medicine, don't get me wrong, but it has been very hard for me, even dreadful. I hate causing him stress & discomfort, or upsetting him at all, even if it's for his own good. I am just a total softy I guess.
As much as I'd like to pretend this didn't happen; one time at a support group meeting I broke down in tears asking the other mothers for tips on giving a baby medicine. I am seriously a softy. One of the mothers asked if I had tried his medications in pill form. No, I had not. But I was willing to try anything. I put in a call to the pharmacy & had his medications in pill form by the end of the week. And since my life has been pure bliss! Seriously.
This is our daily routine:
We wake up go downstairs, I get out his pills, cut them to size & say "Time for your nummies!" Josh walks up grabs the first pill from my hand, pops it in! Then he does the same with his second pill. What a good little boy! We have the same routine at night. It is awesome. He willingly takes his "nummies" no complaints. In fact a couple of times he's walked up to the medicine cabinet & reached up calling "momma, momma" I ask "do you want your nummies?" he nods "yes" ....unbelievable! I know it was silly for me to dread giving him medicine, but I really did. I'd push it off as long as I could & just hated forcing that nasty stuff in his mouth, watch him cry, then choke, and spit out what he could. Day in and day out it took a toll on me. Thank heaven for pills!
Life after the Glenn has been amazing! Joshua has taken off! He's grown a lot, learned a lot & has lived a very normal life. Two weeks after being released from the hospital he no longer needed the feeding tube that had sustained his life up to this point. It was a miracle! While hospitalized he also had difficulty keeping any feedings down. Yet on the drive home from the hospital he held his food down for the first time in months, & never spit-up again since. Another miracle!
We can hardly believe that our baby's first year has come & gone! Reflecting on the year I feel so many emotions; happiness, love, relief & gratitude to name a few. But my strongest emotion is love. I love that boy so much. Everything about him amazes me. He certainly hasn't had an easy year, but you would never know it. He is as happy as can be, he is sweet, he is silly, he teases his sisters, he looks up to his daddy, he is everything a little boy should be.
It has been a year of trials, worries, fears, but most importantly smiles, laughs, and growth. We don't know what Heavenly Father has in store for Joshua. But we know he was sent to us for a purpose. It feels like it was just yesterday that I got to hold him for the first time & feel his soft little head on my cheek. The memories are all still so fresh in my mind. I have truly cherished every second that I have had with him, which I probably wouldn't have if not for his special heart. It has been by far the most challenging year of our lives, but also the most rewarding. We feel so blessed to have Joshua as our son!
recovery. This was not the case. Much like his first open-heart surgery, this one was very hard on him. He went into surgery very weak & had a moderate tricuspid valve leak that also needed repaired to improve the function of his heart. The surgery was a success, but the anesthesiologist told us that he had a difficult job keeping Josh stable. He said that Joshua kept him on his toes, the whole time. 
was nice to see the results so suddenly. But he hit every bump in the road this time around too. First he had gotten staph a infection, then his rhythm was off, then he had severe anxiety attacks, he had damage to his glads etc, etc. After nearly 5 long weeks of recovery in the PCICU, eventually he was taken back to the OR, his chest re-opened & had a pacemaker placed in him.
we were finally able to bring our boy home, we were excited & a bit nervous all at once. Up until this point he had a crew of medical professionals monitoring Joshua's every move. Now it was our turn. We felt relatively confident about taking him home because we spent every day & night by his side. We were very familiar with everything. He was sent home on oxygen, a feeding tube & 8 medications to be given around the clock. We were trained on how to put in his NG tube, how to administer the medications, as well as the ins & outs of oxygen tanks etc.
o good to show our baby that the world had more to offer. Although we were under "house arrest" as it was cold and flu season. We were warned that if Joshua caught RSV (a respiratory virus...basically a cold) it could be deadly. We weren't willing to risk a cold killing him after all he had been through, so we were diligent in keeping ourselves isolated.
. And I think the hardest part was his reflux which meant he'd spit-up after almost every feed. This was hard because it was clearly painful to him & happened very regularly. 
his bed (and the team of nurses) to his new home. As the nurses got him situated in the PCICU we went to gather our belongings from my hospital room. As soon as we walked in the room the phone rang, it was a PCICU nurse, calling to let us know our son had been intubated because he had stopped breathing on his own again. This meant, (among other things) that we wouldn't be able to hold our baby again until he had recovered from surgery. It was difficult for us because we had been so optimistic, but so far things weren't going too well. By day 3 Joshua was in need of his first surgery because he was progressively getting worse.
elt relief, excitement, and so much gratitude. His surgery was a success, but we were warned how critical the next 48 hours would be. It was a very long week that followed. His chest was not closed after surgery & remained opened for 5 days due to extreme swelling. It was a very scary time. After is chest was closed they told us again that the next 48 hours were critical. To this point his entire life was critical & it felt like we were holding our breath the whole time. Two weeks post op, Joshua was still intubated. When they tried extubating him this opened a new can of worms ( by this point we were on our 5th can). After being extubated Joshua's health quickly declined. He was breathing extremely fast, it was exhausting watching him. Clearly something was wrong. A nurse pulled me aside & told me at that moment he was in an extremely delicate state. She was telling us that we could very easily lose him that night. I prayed & told Heavenly Father that I didn't care how long his recovery lasted, as long as in the end he would be okay...I begged that he would just be okay.
gain. This time it was sucessful. Finally after about 3 weeks we were able to hold him. It was wonderful. Up to this point we spent every waking minute at his bedside talking to him & holding his hand...you can imagine, we couldn't wait to hold him tight!
I remember laughing and crying all at once when the ultrasound technician said "it's a boy!" I was so excited! Jon was too & as soon as she was done we literally ran out to the car in the parking lot because we just couldn't wait to tell everyone the good news!!! On the car ride home we couldn't help but plan out all of the extracurricular activities he would participate in, & imagine who he would look like. We were on cloud nine.
called Jon & hated what I had to tell him. Then called my mom & asked her to watch the girls for me & told her why I needed her to. She told me that she knew everything would be okay for us. I was so scared & prayed the entire drive down town. I prayed that I would be able to at least meet my baby boy, I just wanted time.
adn't. The information tracked about 20 individuals with HLHS and I think 4 were still alive at the age of 5. There was no information about these kids living beyond that age. It was very outdated. But we didn't know that. 
tle girl has a CHD she still leads very happy normal life. I hoped that we could be so blessed. But I had no idea if my son would be strong enough after birth to undergo surgical repair. 
