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.

1 comment:

Corrie said...

What an extrmely difficult time this must have been for you and your family - but such a strong boy you have there!

I found my way to your blog through Owen's site. I too have a son named Joshua that was born in Aug. 2007 with a heart defect called TGA.

I look forward to reading the rest of Joshua's story. I've seen some of your more recent posts and it's amazing how well he is doing now given his rough start. These little guys are amazing!