Quick Update - Post-Op Status

William's surgery was completed without a hitch.  The surgeon commented on the size of the hole... apparently it was massive.  Some things you can see with an echo, some things you can't... the size of the defect is one of those things that you just can't see.  Just goes to show how hard William had to work to move the blood throughout his body and why the surgery needed to happen sooner rather than later.

The next 24-36 hours are very crucial to how long his recovery will be.  So far there hasn't been anything too out of the ordinary, although, his body is definitely responding to the trauma of surgery.  As we speak I'm watching a nurse who is, in turn, watching the monitors constantly, walking back and forth, adding/adjusting medicine, explaining things to me as they go along.  As the doctor put it, levels that he shows now, may not mean anything in a day or two, but since it's within the first 24-36 hours, the look at everything.  I am 100% confident in the nursing staff and doctors.  He is absolutely getting phenomenal care.

Lindsay and I thank all of you from the bottom of our hearts for the outpouring of love and support through texts, emails, notes, prayers, fasting, thoughts, and acts of service.  All of you are busy-ridiculously busy-and yet you still find time to do these things in support of us and William.  I know I will never be able to individually thank all of you for the many things you have done.  We love you and humbly ask for your continued prayers as we begin the post-operation journey.

With Love and Gratitude,

Dan and Lindsay

Surgery Plan

Many of you have asked to be in the loop in regards to William and the time of his surgery. I will briefly fill you in on the details as they have changed often within the last week.

Wednesday William had another bad day and we found ourselves back at the hospital again for the 3^rd time. His breathing was faster, he had not tolerated his feeds and he was anything but calm. At this point, the doctors have done all that they can do in regards to medicine and care, and their hands are tied until he get his heart repair. So it was a easy decision for the cardiologists and surgeons to unanimously agreed that it was time to operate. William will remain in the hospital and will undergo open-heart surgery first thing on Monday morning. This is a major and intricate surgery where they will put him on bypass and completely reconstruct the valves and chambers of his heart (which is the size of a walnut). This heart repair often encounters many complications. We are asking for the prayers and holding a special fast (on Sunday) for all who wish to participate. At best, he will remain in the hospital for 2-3 weeks. The marvelous thing we have learned is that babies with Down Syndrome tend to rebound and recover more quickly and easily than normal developing children. So we are praying that all goes well, and that after this surgery he can heal and lead a normal life.

Thank you again for all your love, kind words, support, meals, and prayers. We love you.

Xoxo,

Lindsay and Dan

He's Home!

He’s home! Little William is finally home. We picked him up about 5 weeks ago from the hospital, and he has been doing very well ever since. It’s great it is to have all my boys under one roof, and none of them are sick (knock on wood).

William seems to have gotten over his RSV quite well. It took about 3 full weeks, but he is back to 100%. Most babies are hospitalized with the virus because of 2 reasons: they can’t breathe and need oxygen (which wasn’t William’s case) and/or they can’t eat. This part semi-affected him. He had a harder time eating because he was coughing so much, but it was a non-issue because he has a feeding tube. So whatever he couldn’t eat from the bottle, we put through the tube.

Regardless of the RSV, William was going to be sent home on a feeding tube. He simply didn’t and still doesn’t have the stamina to finish a bottle on his own. His heart defect makes him feel like he’s running a marathon and drinking a bottle at the same time. In addition, the swallow/suck/breathe combo was hard to coordinate. So while in the hospital the nurses made me become “familiar” with the ng or feeding tube.  Any type of cord/tube on a child freaks me out, and I have had a difficult time coming to grips with the fact that I’d have to deal with it. The first 2 times I tried inserting it through his nose, it coiled out of his mouth. Yeah, not fun. Especially when your poor boy is screaming his head off. The third time was a charm, except for the fact that I vowed to never again insert it on my own. It needs to be changed monthly, and I’ll have one of my home nurses do it for me. I wanted to do it once so that if he happened to pull it out in the middle of the night, I would have the confidence to get it back in. Let’s just pray it never happens…

The feeding tube has been both a blessing and a curse. It is a pain to mentally be aware of –when you dress him, bathe him, cuddle him or even just pick him up. It gets wrapped around his body, coiled around his arms, pulled on and yanked. I’m actually surprised it hasn’t come out yet. But on the flip side, it is a wonder and blessing at night! We have a home feeding pump which we hook up to William’s ng tube, -which means he gets continuously fed for 10 hours at night and therefore he sleeps 12 hours straight. Yes. It’s a beautiful thing. The main purpose of the pump is to conserve his energy, so he can try to bottle feed as much as possible during the day. I offer him the bottle every 3 hours, and he usually eats 1/5 of an ounce each time. Barely anything. Sometimes it’s more and we get so proud and cheer him on, but that’s few and far between. So whatever is left over I have to “gavage (sounds like garage).” It’s a technique they showed me in the hospital where I hook his ng tube up to a big syringe, pour the rest of his milk (which is fortified with extra calories so he eats less and gets more) in the syringe and let gravity work. It slowly works its way down the tube and lands directly in his stomach. It gets a little tricky with a 2-year-old running around, but luckily Cooper is still in denial that his little brother exists and keeps his distance.

So this whole feeding thing is a process and learning curve but it is SO much easier to deal with than making 2 trips to the hospital every day and the emotional roller coaster we endured. William is home and thriving. Many people have asked me when his surgery will be. We still have no idea. Every time I see the cardiologist, I try to pin him on at least a month, but he won’t budge. It really is a week to week decision. But ideally they’d like him to be 12-15lbs. William’s little heart is the size of his fist, or a walnut right now. They’d like him to plump up a bit before he goes in.  And once he has his surgery, hopefully his feeding tube will come out shortly there-after.

So that’s our update from here. Again, I am humbled by the many thoughtful notes from those who I haven’t heard from in years, from the dinners we’ve received and for the kind words from all. Thank you for caring, and for being a part of our lives. I honestly couldn’t be happier right now, and we are starting to get back into the groove of our lives.