Tough Little Man

We showed up at Children's this morning at 6:30am after a rough night. I was really stressed and woke up every hour or so, making sure I was following all the dietary restrictions for Noah while I prepared his feeds half awake (no formula after midnight, no breastmilk after 2am, etc). They finally took him away at 8am, and I started bawling. Just a simple straightforward procedure, but still scary for mom! Because they also did a CT scan while he was under anaesthesia, Noah wasn't done until almost 11am.

His tummy is SUPER sore, but if you know Noah, you know that he is toughin' it out. No bawling or intense screaming, just moans and groans here & there to let us know he's hurting. :( He is such a tough little guy! We want to avoid giving him morphine, and he's just on tylenol at this point. Depending on how he does tonight we'll make the decision whether or not to give him the morphine (to help him sleep if nothing else).

The g-tube doesn't look that bad. As Kyle describes it, it looks like one of the blow up holes on a raft or a floatie, that you put the plug in when you're done blowing it up. It's flush to the skin, and the cut at the surgical site is about 2cm, and there is another vertical cut right in the middle of his tummy that's about 1cm. It hurts when he kicks though because his tummy is stretching out. It will take about a week before it really feels better, and at that point we can use it. Until then, we have to continue with the stinkin' NG tube in his nose while the G-tube heals. We're so excited to have it off his face!

Dr. Perkins just came by Noah's room a little over an hour ago after reviewing the CT scan. After precise measuring (vs. the eyeballing we've been doing the past few months), on average Noah's cysts are 1/3 the size they were when he was born, meaning they've shrunk 66%! Crazy! We talked more about further treatment too, and Dr. Perkins is revisiting the idea of the schlerotherapy. Generally the OK432 (the drug they inject in to the cyst) only works on MACROcystic lms, and because Noah's have gotten so much smaller, he is on the fence between being MICROcystic and MACROcystic. So, in a few months we may try the schlerotherapy on the large cyst that sticks out front, and see how it does. It will take 3-4 injections to see if it works. At that point we can decide to use the schlerotherapy on the rest of his cysts, or we can still go ahead and remove the mass with surgery. Dr. Perkins said he wants to educate us as much as possible and then let us make the decision on the method of treatment. Which I totally respect, but that's what we pay him the big bucks for!! :) We are just very excited for the next couple years for Noah and to see the healing take place. We know God can choose to heal Noah over night. These are simply the plans we are making in case that doesn't happen.

I better head back to our room. I'll grab the camera and post pics too of our sweet little boy in recovery. Looks like we'll be heading home Sunday night if everything goes as planned!

g-tube Surgery

Last week was wild. For the first time since Noah's been born, he got an infection in his LM and experienced some major swelling (which is apparently common with his diagnosis, and you really have to watch for it), sending us to the ER at Children's last week. Thankfully it is being treated with antibiotics and swelling & redness has gone down dramatically. I was freaking out when he woke up with the swelling. I kept asking the Lord for a word, I kept hearing, "Trust me". So I kept saying, I trust you Lord, and He was faithful! This of course happened the week before his g-tube surgery... ahhh! It isn't totally back to normal, but most importantly its improving. If the antibiotics didn't work (and it wasn't an infection, but simply swelling in the area), they would've had to operate and remove a large amount of his hygroma. Which could be a mixed blessing. Of course I want that thing gone, but docs tell us that they have the best long-term outcomes with these if you do NOTHING, so we want to put off surgery as long as possible, or until it stops going away by itself. We're thinking when he's a year old. But, we'll find out more this weekend because at the same time they're doing the g-tube, we're going to have an MRI done to see how his cysts have changed over the past four months. Dr. Perkins said he could and would operate for removal at 6 months at the earliest, but we'll see.

On a side note,

The rest of the swelling from the infection last week could take a while to go away because the area was obviously already swollen anyway.

We're still planning on going ahead with his g-tube surgery this friday. I'm starting to get anxious about it. As much as I know it's going to improve Noah's quality of life not having that stupid tube down his nose and eliminate the puking that occurs after 50% of his meals, I still can't help but be sad that his perfect little tummy will now have a hole in it! Noah's docs continue to remind me that this can be very temporary and he could only need it for a few months, depending on how he does once we introduce solids in the next couple months. I'm super excited for this!

Kyle & I are heading to Seattle thursday night while we await the call for the exact surgery time on friday. Noah will then have to be hospitalized for a few days following the surgery, so we'll be staying in Seattle and my mom will be staying at our house with Ella. It will be nice to have a "vacation" for the two of us, even at the hospital hahaha.

Please pray for a quick & easy recovery for Noah. It breaks my heart that he'll be in pain, eventhough its a routine surgery and the long-term benefits outweigh the risks & pain. I'm still his mom and they're still cutting my baby boy, right? Please pray for the docs hands to be steady and stable, and that everything goes as routine. Lord, I know you're ultimately in control.

We had an awesome time with Kyle's cousin Pete this last week, getting to hang out and chat. We're so excited that he's moved up here for the summer at least, only 20 minutes away from our house. It's cool for Kyle to have some family close, and Pete is a blast. He even got Tuco to walk the canal OFF HIS LEASH and obey!

Here's a video clip that Kyle took this morning of Noah talking, so cute! Don't forget to scroll down and pause the music at the bottom of the page so you can hear him.

I'll be sure to update this weekend in the hospital, because without Ella I'll actually have time hahaha. Thanks for all the prayers!

Soccer star in the making!!

Hey everyone its Dad! excuse the the typing errors and my grammar. i just wanted to post some pics of my handsome son in his first soccer uniform. we just got back from the hospital today and our three appointments. Noah will be having surgery on May 29th to have his G-tube placed in his stomach. we have two appointments on May 20th(andies b-day) to see if everyhing is a go for the procedure. On the 29th we are also going to have another MRI to see how his LM (lymphatic malformation) is doing and changing. Dr. Perkins will plan surgeries for Noah depending on his findings. Dr. Perkins is not recommending the schlero therapy for Noah so we are not going that route. Andie will update more later because it took me 20min to type this! lol

Consult

So we're heading to Seattle tomorrow for our consult with the surgeon who will be placing Noah's g-tube. Please pray!

Here's a few pictures from our weekend with Nana here: Oh, and Ella got her first haircut, so cute!

Can't steal a smile!

Noah is a smiling machine these days, but apparently I'm a crappy photographer because I can NOT capture a good one! Anyway, here's a couple I took this morning so you can at least see how quickly he's changing.

Do you think he looks more like me or Kyle?