saying goodbye...

I said goodbye to Vanessa and Anton tonight. My flight boards at 6:20 in the morning. I'll be home by noon my time.

I'm really, really, really going to miss this kid. I love him so much.

I don't want to think about it. :(

sweet anton time

I'm going to keep this short and sweet because it's after midnight here and I'm pooped. Anton is so sweet and wonderful and has the most mellow, content little personality. He LOVES being loved on by Mommy and Daddy, but has also been really quick to warm up to Jen and me. 

When we got there on Saturday, Vanessa hadn't been out in days, so we all went out for a walk. It was a warm (but not too warm), beautiful night, and the garden/walkway area outside of the hospital was so pretty. Anton was in Heaven!

Vanessa and I were so anxious all day yesterday and last night. Between having to do bath and bandages (which is really painful for Anton), messing up his IV, having unsuccessful pricks on the floor, going back and forth on whether to do the NG again (we didn't), and him having to have his IV done down in Anesthesia, SLOOOOW Sunday service, and having lots of unanswered questions, things were just building up. We each had a good cry at different times, and we were both feeling peaceful this morning. (I actually only got three hours of sleep the night before and dreamed that the Tribulation had begun and I had been left behind. And that there was a little EB boy with me during all of it - not Jonah or Anton - who had just had a g-tube operation and his button kept falling out. Horrible dreams. Restless sleep.) God answered all our prayers though and we really did feel good about things this morning.

They would not let Vanessa go back at the beginning, but did agree to let us both go back at the end to re-bandage him before taking him to recovery. They answered all our questions (correctly!), and we knew he was in great, EB experienced hands. He was agitated this morning and not digging being down in pre-op.

And then he got good drugs...

And all was right with the world again...

"Mmmmmmm, good stuff."

It was so so funny.

Starting to get playful. "Stop hitting yourself in the face with your IV, Anton."

"I love you, Mommy."

Blowing bye bye kisses. He was so content. It was a wonderful way to leave him.

 Or for him to leave us, rather.

"See you soon, Sweet Babe."

It took them a long time to get him prepared and intubated, but all went smoothly. After that, the actual surgery probably lasted no more than 30 minutes. Turns out his stomach wasn't turned as much as they originally thought, and there were no complications (besides normal EB ones). Praise God!

They then called Vanessa and I to put on our scrubs to prepare to come back. We were in a consult room by ourselves, but then looked so ridiculous, we had to call Jason away from guarding our stuff to document our absurdity.

I truly believe that God has a great sense of humor and provides us with these moments in hard and stressful situations to ease our burden. I also live by the philosophy, "You have to laugh about it so you don't cry," and I always prefer laughter over a sob fest... although I do plenty of that too. :)

The re-bandage and extubation went well and then Anton went back to recovery. They had to keep him down there a long time because his heart rate was low, probably due to being cold combined with the pain medicines, but soon he was able to head back to his room.

A sleepy, sleepy (adorably cute) baby.

He had a pretty low key day after surgery, and they mostly left him alone. He is in some pain but seems to be doing well when on pain meds. Toward the end of the night, he was starting to play with us and be silly and was resting peacefully when Jen and I left. (These cell phone pics were literally 5 seconds apart.)

 

Tomorrow we'll have to do bath and bandages again, and they will begin seeing what his stomach can tolerate through his g-tube. They will begin with Pedialyte and then try some formula as the day goes on. Please pray that he can handle feeds well, so we can get that IV out! IV's and EB kids do not mix. That is the last big stressor, and then things should settle down. Vanessa has a hard time sleeping, worried about him rubbing his face with his big ol' bandaged arm or ripping his IV out. It is really stressful.

Plus, we just can't wait to pump this sweet boy full of nutrition to get his wounds to healing. He does have some infection on his right arm, and we haven't heard yet how to treat that, but they are recommending vinegar baths for now. It smells like we died Easter eggs in the bathroom.

I'm sad that tomorrow is my last day with Vanessa and Anton, but also anxious to get home. Jonah has been sick and throwing up a lot (from congestion) and is now on breathing treatments and Prednisone (again!). Instead of making him super grumpy this time, they are making him wild and crazy and he decided to crawl over his crib railing today. Granny caught him half way over, so thankfully he didn't fall. This is so out of character for him, as he is usually a really cautious kid for the most part. Anyway, he's now sleeping on his crib mattress on the floor so I suppose he will be getting a big boy bed when I get home. STOP GROWING UP! Or at least wait until I'm home from Texas, thankyouverymuch.

Thank you all for your love and prayers. Jason and Vanessa are doing an AMAZING job, and they are already such wonderful parents to Anton. God has put them together for a very clear and wonderful reason. So amazing to get such a clear, small glimpse into his glorious plan and vision. What a story. What a baby. What an amazing God we serve. All glory to Him forever!

(This was not short and sweet at all, and now it's almost 1am, so please forgive the no proofreading. I'm beat. :) )

surgery update

Surgery is done! Everything went really well. They let us go back and rebandage him and are extubating him now. You can check Vanessa's blog for more details.

prayers for anton

Will y'all please remember to pray for Sweet Anton tomorrow morning at 8:00am Central Time? He will finally be getting his g-tube.

Obviously, no surgery for an EB child is simple surgery, so we just ask that you pray for the IV and intubation process especially. Vanessa and I had to change the bandages on his IV arm today due to some infected wounds. In the process, his IV slipped out, and so he finally had to go down to anesthesiology tonight (after a couple of unsuccessful tries on the floor) to get a new one. Of course, we felt horrible, but the arm HAD to be washed, treated, and rebandaged. There was no other choice. I told Vanessa that EB is all about making the best decision based on what's best and what you know in that moment. Treatments or medical choices are always win/lose with EB, and you just have to choose the lesser of the evils in that moment and take things a step at a time.

They will have to do an art line tomorrow, and the intubation will be tricky. With RDEB there is a lot of scarring, so Anton can't open his mouth very far, so intubation is much tougher. Thankfully, Vanessa says the Anesthesiologist is knowledgable, well prepared, and has done EB children before.

I ask that you pray for renewed strength for Vanessa, as well as peace and courage for all of them. Vanessa has been in the hospital with Anton since Tuesday, and she's just worn out. Please pray for her endurance as she continues down this road. Please pray for the intubation and surgery, but also that Anton will tolerate the g-tube well from the beginning and can handle his feeds. As soon as he shows that he's tolerating feeds okay, he should be able to go home. When Jonah got his, we stayed two nights after surgery, but I guess we'll just have to wait and see with Anton.

As always, thank you for your prayers and for caring so much about our EB Sweeties. We are thankful we are not alone.

anton update

Anton will have his g-tube surgery at 8:00am Texas time on Monday morning. I'm flying out tomorrow (Saturday) to help them out for a few days. I'll come back Wednesday morning. I'm looking forward to meeting Sweet Anton and seeing these folks again...

And I get to stay with Shawn and Jen, you know, my friends WHO MOVED TO TEXAS.

And I'm really (really, really, really) happy about that.

Yet, somehow, every time I think about being away from Jonah for four days, I tear up and almost can't contain myself. We will be Skyping A LOT.

They did do an ECHO on Anton and his heart is completely normal. Praise God! However, they discovered his stomach is transverse, which could complicate things some with surgery. They don't seem overly concerned though, so we're trying not to be either. Please keep Anton in your prayers. I'll try to post an update after surgery on Monday. Thank you all so much!

If you're interested in reading the posts from Jonah's g-tube surgery, it was in late April of 2010. You can just use the blog archive over to the right.

growing jonah

Jonah is still refusing to eat, but the nutritionist came today and said he's growing great. He's gained a pound and a few ounces since last month and has grown 2.5 cm, I think she said.

He's in the 45th percentile for height, 50th percentile for weight (WHAT???!!!), and his weight to height ratio is in the 75th percentile.

So as frustrating and maddening as long g-tube feeds are, they are obviously working. I would rather deal with the frustration I'm feeling now than deal with the constant fear I felt before we had the g-tube... when I literally had to force milk down his throat (just for him to puke it right back up).

I know y'all have a lot of questions about what I have and haven't tried, and why I can't do this or that. I don't really have a good way to answer them since they're scattered throughout the comments. I'm up for suggestions, though, if you've been here before. Thanks for letting me know what's worked for you. Anything is worth a shot!

ugh

I'll be honest. Today was a rough day. This will be short.

Jonah gushed one time yesterday and three times today after probably five days of not gushing at all. Needless to say, I'm completely frustrated and confused. I don't get it. He barely had enough today to stay hydrated.

His tube has been leaking more than usual today. When I finally got him to drink an ounce of Apple Juice, it leaked out of his tube and all over his shirt. Yes, the little flappy was closed. I don't know why or how it leaked.

He had his fifteen month check-up this afternoon, including three shots and getting the granulation tissue that's growing under his tube cauterized with Silver Nitrate. He was completely freaked out any time they touched him to do anything.

I had my annual check-up at my OBGYN office. It was much more difficult to be there than I anticipated. Facing the happy memories of being pregnant, the horrible memories of Gabe's death and the anxiety I felt with my pregnancy with Jonah, and facing the reality that I'll never be pregnant again kind of slapped me in the face. I hated it.

And to top things off, Jonah is regressing on his solids eating. He will only eat a little bit of soup (sometimes) as compared to 1/2 cup twice a day before. And remember the yogurt he loved that one day last week? Well, now he gags, cries, and pushes the spoon away when you try to feed it to him. Same yogurt. Same time of day. Same spoon. Frustrating.

I know these are all little things in the scheme of things, but all piled into one day... too much.

I'm hoping that maybe Jonah just has a little tummy virus or something and that we're not going to start having those bad tolerance issues again. A lot of the vomit today came from oral feeding. Some came after I had used the tube.

I really want to switch to all blended foods through the tube instead of formula, but it is so hard to get the calories he needs in small enough quantities that he can handle it, while still getting all the food groups, vitamins, and ounces for hydration he needs. But man, I'm reaching my limit with formula.

It's been a long day. I'm glad it's over. Tomorrow has got to be better.

playing with pinwheels

My friend, Jenn, the professional photographer who also took the photos for Jonah's birthday party, came to help with dressing change on Monday. Right before she left, she grabbed her camera and took a few beautiful shots of Jonah. He was in a good mood and playing with his pinwheels, so all was right with the world. These images are unedited, straight out of the camera. (They make me want to buy a new lens, an external flash, a light diffuser thingy, and also a Canon... Thou shalt not covet, Thou shalt not covet. Thou shalt not covet...)

Isn't he beautiful?

"Ohhhhh, a big flower one."

And BIG news folks: As of yesterday Jonah can sit up from lying down. My mom went up to get him out of bed after his not-so-nap yesterday morning and he was SITTING UP in the crib. And then later in the evening, I took him outside and put him on a blanket while I watered the flowers, and he showed me three different times. Back, tummy, hands and knees, to sitting. He's a CHAMP!

We had a good g-tube day today. I went to four bottles instead of three in hopes I wouldn't have to bolus as much. He can handle a lot more with his first bottle of the morning, so he took eight by mouth, and I bolused two. That was around 9:15. At 12:30, he ate five, I bolused three. At 4:30, he wouldn't eat at all, so I held my breath and bolused five. And at 7:45, he ate four, and I bolused two. Except for his very first bottle, I vented his tummy every time right before the feeding. That gave him a total of 29 ounces, NO GUSHERS! Thank you so much for your prayers. I know we'll have bad days and good days, but I'm thankful that today was a good one. Did I mention he took a two and a half hour nap too? Woohoo!