Monday, May 10, 2010


We made it through last week! After meeting with the Seattle Children's Hospital surgeon on Monday, we got the green light for surgery the following day (Tuesday). Along the way they were able to rule out 2 yucky additional procedures. I can't even begin to tell you how happy this made Jon and I. We knew the other procedures had a week long recovery time in the hospital. A week! Mind you we're leaving today for vacation, so we desperately wanted everything to work out this time.

I can't even imagine being in the hospital for a week and it seems I have forgotten how bad it is to be in for that long. Only a year ago we began our nightmare of a NICU journey that lasted 4 long, long months. The hospital is never fun, but when you find out that the recovery time from a surgery is just 2 days, you get excited!

Jack's surgery went pretty well. As far as pain goes, this one goes down as the worst for our poor little guy. My heart was breaking he was in so much pain! And he has gone through 7 surgeries - even brain surgery and this was the worst! The pain plan didn't work out that well at the beginning and he was in agony for a couple hours post op. It was a helpless feeling. FINALLY, the morphine kicked in and he was able to rest.

We were there for 2 days and Jon and I both spent a night in the hospital with Jack. You don't sleep because the nurses are in every couple of hours and Jack was hooked up to all of the monitors. I found myself glued to his stats (O2 and heart rate)... just like good ole' NICU times. The Peds nurses were great though and Jack is basically a celebrity at Community Hospital. We had so many visits from Jack's Dr.'s, nurses, and therapists from his days in the NICU. They were amazed at how well he is doing and how well he looks. It was just another reminder that we truly have a miracle boy.

Jack now has a g-tube. It was a little intimidating at first, but we are used to tube feedings and everything that goes into them. I am most worried that the little "button" that is hooked into his tummy will pop off or he will grab it off during these next couple of weeks of healing. If that happens, we head straight to the ER so they can put another one in. Once it heals fully, we have been trained to put the button back on ourselves. Here is a pic of what the button looks like:

Obviously that is another cute little kid, but Jack's looks exactly the same. It really is amazing what we can do these days regarding medicine and health. I am so thankful. So this is how it works for us - we offer Jack a bottle of 5 oz of beefed up formula, 5 times a day. We give him 5 - 10 minutes to start eating. If he doesn't show any interest, we feed him through a tube attached to the button. So for example, yesterday he ate all his bottles except 1 at 11:00am. We then gave that formula to him through the tube. This allows Jack continued nutrients and enough strength to have the energy to eat the next time. We also continue to feed Jack solids and work on his feeding skills. This weekend he ate a graham cracker! Yes! We are making progress. We are on our journey to chub him up.

Today is a good day because we get to leave for vacation. Our first vacation as a family. This is something that was planned almost a year ago exactly. We were going to celebrate our 5th wedding anniversary, but then Jack came early and plans changed. We are headed to Salt Lake City first for a wedding and then for our vacation to Park City. I am so excited!

Another big milestone is happening this week too. It's Jack's birthday on the 15th. Our little guy who was born 4 months early, weighing only 1lb, 2oz is having his first birthday. My goal is to reclaim that day as one for celebrating and remembering how amazing it is that Jack is alive. I want to put the horror and devastation of that day behind. Truthfully, as we have gotten closer and closer to the day, I have been remembering and feeling more negative emotions. It is hard to think about what happened. My goal - I don't want to dwell on what could have been, but instead celebrate the gift of Jack and look forward to how he is going to change the world. I know I will pause around 8:50pm on Friday night and remember Jack's birth. I just don't want to dwell on it.

We don't have big plans for that day (party to come later). Just relaxing as a family and maybe feeding Jack a cupcake. The day will hopefully be about spending time together with no health worries or concerns... I am praying it will be a beautiful day and maybe we can go on a walk and just enjoy Jack.

Ok... long post. Must continue packing and then off to Utah!
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Blalock said...

So glad you hear that Jack is doing well and that you'll be able to head out on vacation as planned. Will be praying that you can put the past and those emotions behind you and focus on the goodness of God's plan for your families future. Much love to you all.

babs said...

Congratulations on your anniversary. And, Happy Birthday to Jack! I'm so glad you get to go on your family vacation!

Julie said...

Yay! So excited for you to finally be able to get out of town and enjoy time together with the 3 of you! I will definitely be thinking about Jack on his birthday too! Such an amazing journey...thanks for sharing it with us and being vulnerable. I have always loved your honesty!