Wednesday, December 10, 2008

Joshua's first year (life after the Glenn)...

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!

Tuesday, December 09, 2008

The Glenn...(the short version!)

As we prepared for the Glenn we had mixed emotions. On one hand, we knew he needed this next surgery, which would make him much stronger, but we dreaded sending our baby off to the OR again. From all we had learned about other kids who have the same condition, we figured that this surgery would be much easier on all of us. We were told to expect a 7-10 day 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.
When we were taken back to see him after surgery it was very emotional for me to see him in that state again. But I instantly noticed that he was pink! He had been so blue leading up to the surgery, so it 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.
Then finally after 6 weeks at UCSF we were able to take him home again! So much for a 7-10 day recovery! But this time we were able to bring home a baby who was stable for the first time in his life & we couldn't wait to watch him learn & grow!

Life after the Norwood...

When 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.
As soon as we got home we felt a huge sense of relief. It was so 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.
Being home also meant that we now became the nurses; tube feeding every 3 hours, giving 16 different doses of medicine at all hours & of course regular baby stuff too. We had to be very organized & had charts for all of his medications, feeding & spit-ups. Thinking back it was tiring, but after the hospital stay that never seemed to end, we were up for the challenge. Really it wasn't that bad at all. I was also pumping every few hours, which wasn't easy, but very worth it. 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.
During this time our job was basically to keep Josh healthy & put as much weight on him as possible in preparation for his next surgery. We were successful on both accounts, he never got sick, no medical scares & he was so chubby!
I look back at this time and have many fond memories. Joshua's health was very delicate, but we were able to really find joy in our time at home with him. He was very happy & easy going, it's just his nature.

Monday, December 08, 2008

His birth and the Norwood

Joshua was born on September 17, 2007 at UCSF Children's Hospital. I was induced 2 weeks early as we lived too far from the hospital to wait until I was in labor. The delivery was normal & went just as expected. He weighed 7lbs 4oz. He arrived just before mid-night, he was beautifully pink & had the cutest cry! I got to kiss him, hug him & then he was off to the NICU for tests, IV's etc.

After about an hour I was able to go & see my precious boy. He was as sweet as could be and didn't need held (couldn't be at this time) to be comforted. He was happy as can be just being spoken to & rubbed softly. I was able to hold him for an hour early the next morning. He had a few apnea spells (stopped breathing) while I held him that were worrisome. After I held him he was transferred down to the Pediatric Cardiac ICU. We walked along side him in 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.

Words can't explain how hard it is saying goodbye to your 3 day old baby, knowing that you may not get to see his precious face again. But we had no other choice, so we kissed his sweet forehead one last time, and cried helplessly as they wheeled his sick body off to the OR. It was the longest 9 hours of my life, but I'll never forget the moment when Joshua's surgeon walked through the door with a smile on his face. I felt 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.
The next morning Joshua was back in the OR. His diaphragm was paralized during his open-heart surgery & needed to be repaired. Four days later, Joshua was extubated again. 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 can imagine, we couldn't wait to hold him tight!
His trouble weren't all over. He hit every bump in the road. He spent 5 weeks in the PCICU. Then he was transferred to the step-down unit where he spent another week. He had serious eating issues, his vocal cord was also paralyzed & had no cry. But finally after just over 6 weeks he was released from the hospital & we were homeward bound!
This was a very brief (I know long) picture of our Norwood experience, there was just too much to get into. We never could have prepared our selves for all of the ups & downs. It was endless. But we had great faith that the Lord had a very special plan for our boy & we knew it was all worth it.
Our other children were champs through all of this. They were 2 & 3 years old. They visited us & Joshua several times a week. Grandma and Grandpa, with the help of my sisters, took good care of our girls. We are endlessly grateful to them for devoting months of their lives to raising our children when we couldn't. In the beginning, the thought of spending any time away from them was overwhelming, but if anything went smoothly through this whole ordeal, it was the girls adjusting to a new way of life.

The beginning...

On May 1st 2007 at our 19 week ultrasound we were over joyed to learn we were having a baby boy! 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.
The following morning I woke up to the phone call that would change our lives forever. It was a woman from Kaiser & she said that she had a couple of questions for me based on findings on the ultrasound. She said that it looked as though part of our baby's heart was a bit small. She wanted me to come back in, in one hour
for another ultrasound. I am not one to jump to conclusions, but immediately I knew that it was serious. As soon as I hung up the phone I lost it. I just cried. I 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.
Jon & I met in the waiting room & were quickly taken back. It took moments before the doctor had conclude
d that our baby boy would be born with Hypoplastic Left Heart Syndrome. We were absolutely crushed. I had never known the pain that I felt that day. We didn't know what to do, or say we just sat there devastated, for about 2 hours. In that time we had asked the staff to provide us with as much information as they could about HLHS. I almost wish they hadn'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.
As soon as we got home we began to research his condition & it wasn't long before we had some hope. All that we could do was remain faithful that the Lord would grant us time with our baby. I thought continually about my friend Lindsay whose little girl also has a congenital heart defect. I always admired Lindsay because she faced so much with her little girl & has done so with grace. I realized that while her little 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.

It is amazing how much has happen in one year. What a roller coaster! I only wish that on the day we learned of his condition I could have seen just how fulfilled and happy we are today. Today I feel like my life is so much richer than I ever imagined it could be. We have the smartest, funniest, most spiritually- curious little girls. And we have the sweetest, most lovable little boy, with a wonderful little heart. Upon learning of his HLHS we wondered why we had such awful luck. Today we wonder why we are so incredibly blessed.
While this journey has brought many, many tears, it has also brought indescribable joy. The pain has helped me to understand what true happiness is. We don't know what tomorrow has in store for Joshua, and never will. But I am continually amazed that one tiny little boy can have such a huge impact on so many lives!