DONE

Whew! We are done with surgery in this family for a while (or so we desperately hope!). James did really well today for his adenoidectomy and ear tubes. We got to go back with him and hold him while he fell asleep for surgery. Then, less than an hour later, we got to hold him as he woke up. He did great. The doc said his adenoids were rather large and that the fluid in his ears was pretty thick, so he expected that the surgery would show some pretty fast results. He did vomit in recovery, but then started waving and smiling, and he's done well here at home, eating, drinking and playing. We both felt almost guilty that we weren't more nervous, but this was a piece of cake compared to our last stay. We were also reminded of how blessed we have been so far when we realized that the couple next to us was waiting not only for their child to get out of surgery, but then had to wait another 2 days for oncology results.

Deja Vu

Since our last post, Big Brother had a smashing firetruck birthday party,James got two teeth, learned to climb the stairs, developed a serious double ear infection, they were both TOO CUTE for Halloween, and the ENT confirmed that James needs an adenoidectomy and tubes in his ears. So, tomorrow (November 10th), we go in for a second, albeit minor, surgery. The part that really stinks is that we "report" to and wait in the same area where we waited for James during the craniectomy in August. So, while we're really not nervous about the surgery itself, we are REALLY not looking forward to it. His surgery is at 2:15, and we expect to see him before 3pm and take him home in time for dinner. We've been told to expect a cranky baby with a bit of extra congestion and bad breath for about a week--how FUN! We'll be sure to update when we are home safe tomorrow.

Too Two

Big Brother turns two on Monday, and I can hardly believe it. We're having a firetruck birthday party. I am going to attempt to construct a firetruck cake tomorrow. Now, anyone who knows me knows that baking is itself a skill I am less than proficient in...but BUILDING a cake? Phew, I hope we don't burn the house down in the process! (Yes, I'll admit I also hope that we finish with something that at least resembles a firetruck.) Is this what people mean when they say our kids will challenge us? Probably not...it's just a bonus.

Now, as a follow up from our previous post about our Picky Paul eater....Big Brother still doesn't eat most things, but I don't care quite as much. He's trying things here and there, and his doc says if he'll eat green beans pureed, then he's doing better than not eating them at all. (Which, at his peanut size of 25 pounds, isn't really a good idea!) He doesn't seem to mind that little James eats all kinds of things that he won't even consider, and he still has no interest in dipping anything in any kind of condiment. He often wants to be fed (like baby James), and only likes to eat if I'm eating at the same time. I just hope I'm not packing Stage 3 baby food in his kindergarten lunchbox!

Speaking of school, Big Brother also had his first day of preschool this week. He LOVES his teacher, and he didn't even notice that I wasn't there. I thought I'd cry, but you know, I LOVE it too. If he's going to have that great of a time, and get to learn some new things, hooray for him, and hooray for 2 free hours for Mommy!

Baby James continues to heal, and continues to return to something more like the little guy I had before surgery. He's laughing a lot, and cries less when he falls or is left alone in his crib. He's sleeping better now....only waking once or twice a week in the night (to the point where we need to go in). We have an appointment with the ENT a week from Monday, and I'm dreading hearing that he still needs another (albeit minor) surgery--adenoids and tubes in his ears. James got a cold about 2 weeks ago, and while the rest of us got better in about 3 days, he is still completely congested. It's like last winter all over again. Once he gets congested, he can't get rid of it.

Pumpkins

Our sweet pumpkins went pumpkin picking today, and in typical little guy fashion, Big Brother wanted a "big punky." Seriously, the thing weighs more than both boys together! I'll post some pics soon of these guys.

We went on our first family vacation last week, off to Gatlinburg, TN and the great Smokey Mountains. James was such a trooper, napping in the car each morning, hiking along in a pack with his daddy, and sleeping fairly well, despite a nasty cold that we all shared. Big Brother is hilarious, trying to crack his baby bro up at every turn. I swear, those two share some kind of secret language. Our camera pooped out before we even took one picture of the beautiful condo, scenery, or fun times. But, we're borrowing one, so here's a pic of James in his carseat today.

We're still battling a lot of night-time waking, which was probably not helped by sleeping in a pack and play for a week at a strange place, where Mom and Dad would come running at every whimper. But, who would believe this little guy had surgery just 5 weeks ago? His stitches are all falling out, and the scar is less and less noticeable. (Often less noticeable than the jar of carrots that Daddy fed him for lunch and are still stuck to his face below!)

We still appreciate all of the messages and prayers. You have been our constant encouragement.

It Never Rains When I Want it To

You humble me, Lord. That's my favorite Norah Jones line. I'll tell you why...

We are 3.5 weeks post surgery, and James looks absolutely fantastic. All of the bruising is gone, the sore on the back of his head is significantly better, and his suture line is a work of art. Really, some people don't even notice it. A surprising bonus is that he has not been congested in these last few weeks. We will have to see if the cranio surgery opened up his head enough to make room for his adenoids when we meet with the ENT in October.

He is also sleeping, (can I get a HALLELUJAH?!) for the most part peacefully. He still has a hard time with a nap here and there, and nightmares on and off. The nightmares are scary even for us (sweaty, screaming baby), but they seem to come earlier in the night now, when we are still awake. He seems to be returning to his happy little self, slowly, but surely. We even left him in the church nursery this last Sunday and he didn't melt down at all!

I've been reflecting on how well babies recover, versus how their moms and dads do. I was told that James would be just fine in the end, but that we, as parents, would have a lot more grey hair. I don't know, I haven't counted my greys. I do know that in the 6 weeks before, during, and after his surgery, I had an eye twitch that wouldn't go away for a week, insomnia, I developed an ulcer, my hair has fallen out by the handful, and I gained 10 pounds--yes TEN!! Goodness. I can't speak for hubby, other than the fact that he also slept fitfully, and the darkness under his eyes matched mine. As for both of our beautiful baby boys though, they are nearly unfazed. They trust God without even trying. Amazing. Humbling.

On a separate train of thought (I have learned the hard way that it is wise to tell folks when you're going to change the subject)....we're still exhausted, although now it is Big Brother causing us heartburn. Our nearly 2 year old will NOT EAT! Seriously, will not eat: eggs, beans, meat, most vegetables (raw, steamed, fried, dipped, coated, or otherwise), rice, pasta, bread (unless it has peanut butter on it), and most cheese. This is not a phase. He has never eaten these things. It's not like he just decided tonight to be picky. He survives on a diet of oatmeal, peanut butter and jelly, fruit, yogurt and whole grain snacks (like Wheat Thins). We don't let him have something else when he refuses the meal we offer him for dinner, and while he'll cry with hunger all night and wake up ravenous, he will refuse that same dinner the next morning! He has multiple times gone 24 hours without eating anything at all because he refuses to eat what we offer him (we're talking mashed potatoes, carrots and chicken here, nothing exotic). So, I know that there were a number of people reading this, many with children, and I'd invite any advice y'all have to offer at this point. Whether we know you personally or not, if you have a suggestion, recipe or trick, please post a comment. I'm hoping to not lose all of my hair this year!

The Things "They" Never Tell You

Friends, I have some beef here, and I'm not even sure who it's with.

First, James seems to be suffering from some form of PTSD (post traumatic stress disorder). Now, if you think about this, it makes perfect sense. Let's translate his experience into adult terms. You go on vacation (somewhere new), with some friends (your parents), and your friends say it's ok to go with these new people (the doctor and nurses). You then you wake up blindfolded (eyes swollen shut), tied down, unable to scream (with a tube in your throat), and in the worst pain you've ever experienced. You can't eat, but they keep cramming these gross substances (painkillers) into your mouth, and then you unexpectedly fall back asleep. The lights go on and off at all hours, and you hear people you know (your parents), but they are not saving you from this torture. Seriously, how does this not mess a person up permanently?!! I'll tell you how...he's 9 months old. In a month or so, he'll forget it. As long as we love him and hold him and reassure him as he wakes up (every 45 minutes all night LONG!), he'll get over it. I hope.

Really, how do they not tell parents that this is what will happen after the surgery? I know, I know, it's just more stress....But, here I was, all geared up, all prepared for the actual surgery, for the days in the hospital, for the coming home, and I'm completely slapped in the face with the fact that my kid acts weird now. I'm sorry, I don't know how else to put it. He looks great. He is externally healing well. Everyone is impressed at how "well" he's doing. But he's not quite the same bubbly little guy that I knew during the day, and he completely freaks out at night. He doesn't like to be left alone. He has nightmares. He's impatient. I'm ok with all of that, but I didn't expect it. Come on people, where was the warning label?

Second, I, myself am having some post trauma issues. I close my eyes and keep seeing my little guy stop breathing. I see him trying to pull his eyes open. I see him lying there in so much pain that it hurts him to hold my hand. I know, this too will lessen with time. I know, this too is compounded by the fact that we're all not sleeping that well. But it still stinks.

On top of everything, I feel guilty. I feel guilty that I'm having such a hard time with this when so many parents go through so much more. The parents of children on the oncology floor. The parents of children on the transplant list. The parents with no insurance. Yet, it's not a "pull yourself up by the bootstraps" kind of thing. I haven't lived a cushy life. I've swam in the pool of adversity; as much as most and more than some. I can organize, compartmentalize, and cope with the best. I pray. I've been prayed for and prayed over. I still feel guilty. I still get depressed. I still cry.

I'm sharing all of this not just for the sake of babbling on, not in hope of receiving any kind of pity or encouragement, but in the off chance that anyone else has or will ever feel this way. I thank God every day that I have Him to lean on, Him to carry me, Him to pick me up when I can't go on. I thank God that I have Him to look up to, instead of looking down at the vast expanse of helplessness that I'm sure extends below me. Friends are wonderful and family are a blessing, but people have a fundamental flaw....they are people. They say stupid things without realizing it. They ask ridiculous questions. They forget. But God never forgets, never belittles, never minimizes, and is never too busy. He always reassures, always gives, always knows what hurts, why, and how to fix it, as long as we ask. So ask. And then cross it off of your list of things "they" never told you.

No Greater Joy

After what we have been through in the last couple of weeks, I have two wishes. I hope that I remember it in detail, and I hope that am brave enough to tell our boys this story and others enough times and in enough ways that they are able to see how the hand of God has worked in their lives.

3 John 1:4 I have no greater joy than to hear that my children are walking in the truth.

On some practical notes....

James is healing incredibly well. We had our first follow up with Dr. M today and he and all of his staff are just amazed at the progress of his healing, and the results of the surgery in general. His stitches are flat and the skin is pulled together so perfectly that there is less than a pen line of scar that will show after it heals. He is still having trouble sleeping on and off, so pray that he'd be comfortable, especially at night. I had nearly forgotten (after 3 months of sleeping through the night) how fast Mamas go crazy on sleep deprivation!

Speaking of Mamas, mine left today to go back home. It might have been the saddest thing I've ever seen to see my two year old standing on the front step as our neighbors pulled away to take Mom to the airport. He realized as they pulled out of the driveway that she was really leaving, and he started to cry as he blew kisses, but then stopped, saying, "No Grams, no." Seriously. The.saddest.thing.EVER. It's making me cry even now. The silver lining to that story is that the reason he was so sad was because we had such a GREAT time with Grams. While helping Mom with the baby each day (and helping Mom get a nap or a break too), Grams took the best care of Big Brother. He was enamoured from the minute she said "new Elmo toy." New toys aside, Big Brother got to go on walks on Grams shoulders, to a new park with a sand pit, water the flowers in his pajamas, and play endless games of ball, choo-choos, cars, bubbles, and of course, have super-long story time. She taught him to say 'three', 'turkey' and 'awesome.' She even got him to eat meat (a feat beyond that of moving a small mountain)! We are really going to miss Grams.

Plop Plop Fizz Fizz

Oh what a relief it is to have my mother here! You know how mom just knows how to make it better? I don't know what it is, but moms just seem to have a magical comforting power. James is still not sleeping well (awake from 12am-3am or more), and with the 5 days of sleep already lost in the hospital, I'm beyond exhausted. I'm so happy to have some help with Big Brother and a chance to nap when James naps. Plus, grandma brought the cutest hats!

My prayer today: that I might have faith like this.....Acts 20:24 However, I consider my life worth nothing to me, if only I may finish the race and complete the task the Lord Jesus has given me—the task of testifying to the gospel of God's grace.

Yesterday I took James out for the first time. We ventured all of 6 minutes away, to the grocery store. I didn't think anything of it, until we got there and while I was pulling out a cart to use, I realized that the teenager re-stocking the carts was staring at us with a horrible look on his face. Now, I'm going to admit that I have always enjoyed that people would stare at my sweet babies and then tell me how cute they were. And of course, to me they both have always been beyond beautiful. But that teen was not the only tacky person at the grocery store yesterday. We received several ugly stares, and one man even looked at me like I had done this to my child. Ugh. I cried. Why can't people be more compassionate? Why can't they just ask what happened, or say "poor guy," or better yet, find something beautiful to comment about, like his great big blue-green eyes?

My spirits were thoroughly lifted when we got home, and Big Brother was there waiting for us. He ran out to the car, yelling "Bro-Bro." He wanted his brother out of the car immediately, and down on the driveway where he could see him. This was it, the moment I'd dreaded. Big Brother looked at James from all angles, carefully, slowly, and then simply said, "Owwww." Then life went on as usual. Big Brother has been very careful, and with one warning, hasn't even tried to touch Bro-Bro's head.

Home Sweet Sweet Sweet Home

Wow, what a difference 24 hours makes! James continues to heal, and the swelling continues to go down. The process of coming home was a little long. We had to wait a really long time for everyone who needed to come by (rounding docs, our nurse, the would care nurse, etc.), but we did have a massage therapist come in who put James to sleep for 2 solid hours, and seemed to help his poor tummy some too! We didn't care, we were just happy to get to go home.

BUT, we came home to balloons, flowers, fresh groceries in the fridge, super sweet mail, a new blankie and teddy bear, books, and (perhaps best of all) a healthy dinner! I just cried. How sweet it is to feel so very loved. We have been absolutely exhausted for the last month, and it is just such a relief to be home and have our sweet boy home with the worst behind us.

We still have some challenges ahead....James panicked several times last night, screaming and needing to be held for a long time. He was in enough pain to need the maximum of everything we were allowed to give him, and his tummy is still upset. He has some rashes from the heat and moisture under all of the swelling he had, and a sore on the back of his head from the pressure. But, he's eating well, and in less pain. He really wants to be held, he fusses a lot of the time, and he's extra tired, so it's kind of like having a newborn again, but it was good to be in our own beds at least. James likes to be home too...the familiar surroundings and routine is getting him to smile more and more.

I ran into Dr.M's assistant on our way out of the hospital, and found out why everyone seemed so incredibly impressed with the surgery. Apparently, they have had a few cases more severe (in shape), than his, but not many. It is amazing what they were able to do. Then, he hardly bruised at all, which is unusual for the amount of work done (there was a little guy down the hall that was black and blue all over his head and face). On top of that, Dr.M's stitching is absolutely perfect...tiny stitches with the exact amount of tension needed to close the skin.

I have to say thank you to everyone who has been reading about our "adventure" because we feel like we walked along the edge of a Grand Canyon of horrible possibilities, but your prayers and love kept James safe. We thought we were going to lose him when he stopped breathing after the seizure, but we didn't; the doctors thought he might have an infection, but he didn't; we thought he might have pneumonia, but he didn't. It's just amazing.

Do you know what else is amazing? Check out some of these pictures......

Before and after surgery shape:

Saturday versus Tuesday morning:

Thanks for keeping up with us through this process. We will keep posting as James heals!

Smiles for Sale

Here we are, 5 days later, and you'd never guess what we'd been through without the pictures. James was babbling away this morning as I watched a beautiful pink and orange sunrise. He's giving smiles away for cheap and eating really well. We didn't sleep well around here, but for the first time, it was the nurses checking on James that woke us (and him) up, rather than James' painful crying. He's still uncomfortable, but only needed a strong painkiller once last night. He still has some sort of GI issue, but hopefully that will work itself out. They even turned his monitors off this morning, so we're just hanging out waiting for Dr.M to come by and tell us to get outta here!

UPDATE: Saw Dr.M this morning and he's really pleased with the result and recovery from a surgical standpoint. Saw the pediatric resident, and other than a few minor things we need to treat/keep an eye on, she's pleased with everything too. So, we're homeward bound this afternoon after the rounding docs come through!

Awesome Blossom

Psalm 138:1 With all my heart I praise you Lord. In the presence of angels I sing your praises.

8:45pm I have only good news tonight. The healing that James has done is amazing. Our sweet boy has been off of narcotics and doing well all day. He's sitting up on his own, reaching for things, and snuggling with mom. He is drinking Pedialite & formula, and has eaten part of a banana and some applesauce. He was really wanting some of Mom and Dad's pasta dinner, but we didn't think garlic was a good idea ;) His swelling just keeps going down, and he gave away his first smile since surgery to our neighbor Elizabeth this afternoon. We loved our visitors today and the treats they brought, and we have the same nurse as last night (our favorite one!). Everything is awesome blossom tonight. Pray it stays that way so we can get our tired and sore bodies home tomorrow!

Oooo Oooo Child

Thursday morning at 4:30am, my alarm went off to bring James to the hospital. The radio blared a song that gave me hope, only because I'd been praying before it came on, and it seemed such a little whisper of encouragement. I even called Daddy up to listen to it. When we got to the hospital, I forgot the song, and couldn't remember it until just this afternoon, when it seems so appropriate.

The Five Stairsteps, Ooh Child:

Ooh child, things are gonna get easier

Oooh child, thing will get brighter

Some day, yeah

We'll get it together and we'll get it all done

Some day, when your head is much lighter

Some day, yeah we'll walk in the rays of a beautiful sun

Some day, when the world is much brighter

Yeah, today is some day, and it is much brighter. No fever, heartrate and blood pressure are down very close to normal, the swelling is going down, the pain is manageable again (without the narcotic!), and James is loving being held. He just snuggled right up to Mommy earlier and fell asleep. He's eating pretty well too, so today's neurosurgeon said he thought we might take James home tomorrow! Pray that in the next day we will see as much recovery as we have seen today, and that the fever he's had will stay away. We have to be comfortable with his care at home before they will release him, so we're going to try to have him up more for the rest of today. Also, he got the rest of the dressing removed from his head about 3 today, and it looks amazing. The surgeon did a super job with the stitches. Here's a couple of pictures from today.

Good Morning

Good morning! Ok, well, maybe it's not GOOD around here, but it's not bad either.

The not so great part.....James was a in a tremendous amount of pain last night, even after they moved his narcotic painkiller from every six hours to every four. We were up quite a bit with him, and it's frustrating to not be able to do more for him. It was even frustrating to our nurse. He has diarrhea, which is kind of a mystery unless he's got some sort of virus, which might explain the fever, the increased discomfort, and the constant diapers.

The great parts....James has opened his eyes all of the way! We can tell he gets a lot of comfort just by being able to see Mom and Dad. His fever spiked yesterday afternoon, but it has been gone since then. Also, they removed his IV, which was not working correctly, and mostly irritating him. He is drinking Pedialite and formula, and enough of them that we will probably not need another IV if he can keep it up. Our nurse last night was my favorite yet, she's usually in the ICU, and she was amazing at some massage to get him 1/2 hour at a time through the pain. She was in here a lot, never just sitting at the desk.

We are happy to have visitors, so if you know us and are completely healthy, have not been around anyone who has had a fever or respiratory illness, and have been wondering about visiting (or have already asked/texted/called), we'd love to see you. We can't have children in the room. Call Mom and Dad on our cell phones today, or send an email, and we'll try to find good times without overlapping and overloading our little room. We definitely won't go home today, and maybe not tomorrow, but we'll know more after noon when the docs have been by.

Thank you for your prayers and positive thoughts. Please just keep praying that James will avoid major complications. We feel like we've been skirting along the edge of a pool of things that could be bad, but we haven't fallen in yet. Pray also that we'll get his pain under control, or just that he'd have much less pain today and going forward.

Two Steps

Two steps forward and one step back...that is the best description of this whole day. James got rid of his fever this morning, but then the doc was concerned that he might have pneumonia. So, we did a chest x-ray and his lungs are good, but the fever is now back and his blood counts show that he's fighting something. They can't see in his ears, so it may be an ear infection. Then, his swelling went down a lot and he opened his eyes! The only time he takes a bottle is right after pain meds, so he's still in quite a bit of pain, but he calmed down a when he could see Mom and Dad. I even got to hold him for almost an hour, and he slept happily the whole time. Here's what he looks like this evening...

He only opens both eyes briefly, but I did catch him for this pic.

Mom and Dad both made it home to see big brother this afternoon. It was refreshing to see our big guy and have him tell me all about "pur-pul flow-ahs" and "go-go" (purple flowers and yogurt). We both took short naps at home too, which is good after our 3rd night of 3-5 hours of sleep.

Quick AM Update

After a lot of poking and blood drawing last night, a spike in fever, and poor blood pressure, we are doing BETTER this morning. James slept from 4am-6am quite soundly, his heartrate went down quite a bit from the super-high rate that it had been at for almost 24 hours, and his fever is down a bit also. He even had another stinky diaper (whoo-hooo!). They will let us know about the bloodwork drawn last night sometime this morning. He is still in a lot of pain, the swelling is about the same, and he is in excrutiating pain when moved, so we are not holding or rocking him. We talk, sing and hold his hand. But, Mommy and Daddy are pretty tired too. Pray that we'd all do just a little better today.

Jokes Please

10pm I'm up watching the monitors on baby James because he is sleeping well, but seems to have some irregular breathing. I'm at his bedside because he seems to be comforted by holding my hand if he wakes. His heartrate is staying pretty high, and the fever is hanging around, but neither are getting worse. Being the prepared Mama that I am, I have all of this entertainment that I brought--books, magazines, movies, mp3 player, cards, etc., but I can't seem to be "entertained" by any of them. I liked the jokes posted under "One Week Assignment," but I'm definitely looking for some more corny humor. My favorite was definitely the cheesiest...."What did 0 say to 8?" You'll have to look up the answer. (And post your own!)

11:15pm It's hard to look at my sweet baby's face and not be pained. Not only does it just look like it would hurt, but it looks nothing like his face. I have had to page through recent pictures to remember what he "really" looks like. Then I remind myself that he'll never look exactly like those pictures again--and that is a good thing, because his new head shape brings with it freedom from worry about him running out of room for his growing brain. It's also a bit sad, because to me that face and that head were perfect. They keep telling us that he'll get better so quickly that we'll forget he ever looked like this. No. Not ever. I will never forget these moments. I will never forget watching him try to claw his own eyes open so he could see.
Never.

11:30pm We have had some more success. James had his first BM...a sign that he's getting enough fluid again. His blood pressure is pretty good too, considering the pain he's in. We are just so fortunate to be here. We have heard of families travelling from as far as India for treatment at this specific hospital. Our nurse is extraordinary tonight. He is from West Africa, and his accent and quiet mannerisms are calming. We talked about the mountains because he grew up near a mountain, which he loved, but has yet to see what the U.S. geography has to offer in the 'mountain' category. I showed him some of our pictures from Glacier National Park, including this one. I'm reminded that it is in spaces like this one where I feel close to God. How is it possible that this kind of perfection just "happened?" No, He designed with love. And therein lies our hope.

Psalm 25:4-6 (New International Version)
4 Show me your ways, O LORD, teach me your paths;
5 guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day long.
6 Remember, O LORD, your great mercy and love, for they are from of old.

Baby Shrek

Ok, so I know it's not that nice, but the best description of little James right now is that he looks like a baby Shrek, without the green tint. He is swollen so much that his ears are sticking straight out and his eyelids are puffy and dark. The good news is that the fever (after hanging out at over 102), is subsiding some, and the pain medication is working for now. Unfortunately, he doesn't want to eat much, so he was getting dehydrated and they had to put the IV back in to give him some fluid. They still had the port in, so it was a quick process. As for the swelling, it may continue to worsen through tomorrow. I have not held him other than the one time, with the help of the ICU nurse. It is just too painful for him right now to be moved, and we're certainly not comfortable getting him out of the bed ourselves.

Mom and Dad are getting lots of good love from friends, but we're both beyond exhausted. Mommy found out this afternoon that the little tummy ache that has plagued her for a few weeks has become a quite painful ulcer. So, pray that we would all get on the road to a swift recovery soon.

Psalm 30:2 Oh Lord my God, I called to you for help and you healed me.

More Blessings than Not

Ok, so lots and lots of doctors later, here's the scoop:

James may/may not have had a seizure yesterday. It doesn't matter too much as long as it doesn't happen again. He is now out of ICU, with most of his tubes out, his head dressing off, and he is able to take a bottle. Mom got to hold him this morning, which was nice for both of us, but getting him in and out of bed was painful for James.

Now the concern is a fever that started just as we left the ICU. In order for him to come home, he will have to have a bowel movement, the swelling has to go down and he will have to open his eyes and be coherent, he will have to eat well and be well hydrated, and we will have to be comfortable with his care at home. The neurosurgeon thinks that will be Monday or Tuesday, unless something major changes.

The shape of his head is amazing. He has so much swelling in his face that it's hard to tell, but the side and back of his head look incredible. Really, we have a list of blessings that are unending throughout this, including lots of visitors, phone calls, cards and prayers. Thank you friends & family! Here is a picture of James after the head dressing came off.

Walk the Line

4:30Am Mom and Dad have taken turns sleeping tonight. It's Dad's turn in the sleep room. James has swollen quite a bit tonight and his little eyelids are purple. They are giving him 1/2 doses of the pain medication, walking a fine line in order to try to keep him just enough out of the pain zone, but not too far asleep. His congestion issues really complicate things more than we realized that they would He normally coughs quite a bit on his own, but his throat is sore, and while under sedation he's not coughing much. So, after a couple of hours, stuff accumulates in his lungs he starts a very loud wheezing, and they have to come in and suction it out.

I've been doing a lot of crying and praying. There are many repetitions of the words "cry out" in the bible. Going through them, you would see how merciful God is. Someone sent me a verse in Numbers earlier, so I was reading on, and in Numbers 20, I came to a place where it says, "when we cried out to the Lord he heard our cry, and sent an angel...." Yes, an angel. Well, God already sent me two little angels, so when we cry for one of them, I'm sure he hears.

Resting

7PM We saw Dr. M again tonight. He is not so sure that James had a seizure earlier today here in the ICU. The problem is, when his system started to freak out (high heartrate, low bp, suddenly flushed and swollen, etc.), they had to act quickly, so they gave him a seizure medication, which shut his nervous system down, which is why he stopped breathing (right in front of us!), then they re-stabilized him and did the CT scan. The CT does not show ANY bleeding on the brain or other reasons to think it was surgery related. The fever he's running is low, so probalby is not the fever either. The good news is, IF it was a seizure, it was possibly just anesthesia related. The bad news is, the seizure medication makes it hard for him to wake up again now.

9:45 James was able to drink some pedialite and a small amount of formula. He is uncomfortable, but resting. His eyes are looking for us when they open (a great sign). He's hoarse from the tubes down his throat twice today, and the respitory therapist says he has some "junk" settled in his lungs. However, he should be able to cough most of it out as he wakes up more. Who knows when that will be? We did get a sleep room (PTL!), so Dad is resting now and Mom will switch with Dad later tonight.

*Just as an aside, every single person who works at this hospital has a heart of gold and are full of more compassion than any 10 people I know.

What is All of this Crap Hanging off of Me, Mom?!

We won't see a neurologist about the seizure until tomorrow. We're taking this as good news because if it were an emergency, they'd come in now. We're waiting to see the surgeon again, and to hear from the rounding ICU doctor. James seems to have a little fever, but he's waking up, they've taken him off of the ventilator, and he's thoroughly pissed off that he can't move his left arm (it's tied down because it has a lot of tube in it that the was trying to pull out). Hopefully they'll get him some pain meds soon and he'll feel a little better. His heartrate is back down below 200, so Mom and Dad are considering some dinner (taking turns).

Undiagnosed Complications Suck

11:30 We met with Dr. M and he said the surgery went very well. He said that as soon as he started making cuts, James' head pushed out over an inch on it's own. Apparently your brain likes to be a certain shape. He only lost a smaller amount of blood than they expected, but still received Dad's transfusion. He also said that the metopic suture (in front) was definitely open when they pulled back the scalp, so he didn't have to do any work there. They also didn't have to cut much of the muscle at his temple, so the swelling might not be as bad as we'd expected.



12:00 We were in the ICU with James. It was incredibly hard to see him starting to wake up, and his poor little head was all wrapped. We cried, and then came to the conclusion that we were quite blessed with how well he was doing.

Picture below: After we got into the room, they transferred James to a crib. He had the nasal oxygen and the head wrap (which will come off tomorrow).



1:30 James began to stir some, then stopped and he began to have a lot of alarming symptoms, and the machines began to beep. Several doctors came in and they gave him medicine for a seizure, which it may or may not have been. They had to re-intubate him, and take him down for a CT immediately. The seizure medicine made him very sleepy, so now he'll have to stay on the breathing machine for a while.

This is what he looks like now:





3:30 Waiting for test results. This sucks.

The Hourglass

Thank you for the prayers and good thoughts! Mom and Dad slept well last night (ok, not well, but better than expected). We woke up on time (thank you for the phone call H.D.!). James did wonderful this morning with his 4:50AM wake up call, his strange, early morning bath, and the car ride. In fact, he hardly cried at all until it was close to time to eat breakfast. Here he is in his car seat as we arrived (blankie in tow):

At 7:15am, they gave him a sedative, so he wasn't so upset about not eating any more. All of the staff have been wonderful...the neurosurgeon, the nurses, the anesthesiologist, the check in clerk. We even had someone bring by a musical toy to try to distract James before we go the sedative. The only surprise that we had was finding out that today is considered Day zero...so James will definitely not leave ICU until tomorrow at the earliest.

At 7:45am, we walked back to just outside of the operating room, and then had to let the nurse carry James in. It was hard to let him go while he was awake, but his eyes were already half mast from the sedative, and they let him keep his blankie. Here he is in his tiny hospital gown:

8:47am we were informed that surgery had started.

We sit and wait as the sands of time slide through the hourglass....we have a dear friend here, and another who works at University Hospital stopped by this morning too. It's hard to connect (no wireless), but I'm going to try to upload several times today.

Upcoming: Between 11-12 we should hear as they start to finish surgery. Then the surgeon will come out to talk to us about how it went. About an hour after that we should be able to see James in ICU. They will decide after surgery if they will need to leave his breathing tube in. They want him to be as comfortable as possible, so that may mean he stays sedated for a while.

Keep praying: We are at peace right now, but the thought of seeing our baby after surgery has loomed over our heads for 3 weeks now. We hope to have strength in the next day.

The Prayer List Begins...T Minus 12 hours

We're packed, we've prayed, we ate a good dinner, and we have a sleeping baby. In 12 hours Dr. M will make his first cuts into James' skull. So, here's the schedule (and prayer list!):

11PM Tonight: I will attempt to get James to take some of a bottle while asleep. This is the last food he's allowed before surgery.
*Pray that he will take at least some of the bottle and that he'll go back to sleep easily.

4:30AM: Hubby and I will be up and getting ready
*Pray that we will wake up on time, refreshed and ready

4:45AM: We will wake James and get him into the bath, clothed and ready to go (no food :( )
*Pray that Mom, Dad and James will be calm

5:15AM: We will leave for Children's Hospital
*Pray that our car will work without trouble, that we will arrive safely and on time

6AM: Check in time for surgery

7:45AM: Surgeon begins
*Pray that the surgery will not be delayed, that the surgeon will be at his best, that his cuts will be precise, that James will tolerate the anesthesia well, that the blood transfusion will be effective and that the amount that Daddy donated will be enough. Pray that Mom and Dad will be at peace throughout the surgery.

12/12:30 James should be transferred to Pediatric ICU by this time.
*Pray that he is stable enough for Mom and Dad to be allowed in, and that we will be calm as we see him for the first time. Pray that James is comfortable and that his stay here will be short.

That's all we know for now...we'll post again as soon as we know more tomorrow. Sweet dreams all!

32 Hours

32 Hours....that's how long before we have to check in at Children's Hospital. I should be sleeping, but I'm slow to get to bed, as I've been slow all day. I feel a little like I've been walking through Jell-o up to my chest today.

James had his pre-op check up today, as well as his pre-op bloodwork. His check up went well, and he's as healthy as we can reasonably expect him to be, so his new pediatrician signed our pre-op paperwork. He said, "Here's your ticket--you can't get into the show without a ticket." I know, a little humor never killed anyone, but all I could think of was, "If there's any way to NOT go to this show, show me the EXIT!" His bloodwork also went fairly well, but she had some difficulty getting the vein and the poor little man screamed and cried and tried to wiggle his way out. He looked at me with that "You're supposed to save me, mom" and I can't. Hubby was wonderful to remind me that this is one of the many differences between babies and parents....baby James looks for instant gratification (feed me, change me, love me, stop all my pain and discomforts), and we have the long term perspective (a little pain now to avoid a lifetime of it). However, I'm reminded that babies also have the blessing of forgetting the pain they might go through, while as parents, we'll remember it for a lifetime.

Thank you for the encouraging messages and phone calls...we appreciate each one, every offer to help, every inquiry, every prayer, every hug and every joke. We truly do have the most wonderful friends and family.

Practicing Slow Breathing

Your many prayers for a restful weekend preceding surgery were certainly heard! Dad and Mom had a great weekend away, and banned medical talk of any kind from the conversation. We ate, we slept, we listened to live blues, we watched the river roll by, we saw a hot air balloon glow, we went to a tasting at a local winery, and we slept some more. Sounds lovely, doesn't it?

The problem is, the minute I walked back into our home and held our babies, I lost my breath completely. Really, I felt like I had been kicked by a horse. My heart hurts that big brother will be away for over a week, and that little brother will be in unbearable pain in only 3 more days.

On a practical note, I hit a little bit of panic when I realized that we have very little for sweet James to wear (without pulling it over his head) after surgery. I know, one thing at a time. So, with the help of a wonderful friend, I went shopping this morning and got him some adorable Carter's rompers that all button up the front. Problem solved.

On a spiritual note, I feel like I'm slipping a little. I believe, I trust, I have every understanding that God has a plan for James, but I can't help but cry today. I can't keep out the biggest what-ifs...what if I'm not able to comfort him, what if there is a complication, what if he doesn't make it through surgery. So I pray, slowly, deliberately, and with the hope that in less than a week, the worst of this valley will have been traveled. I don't need any lectures about worry or reminders to spend my time focused on blessings (and there are many), I just need to remember how to breathe in and out, all week long.

Who Wouldn't Love This Face?

An Assignment with a One Week Deadline

Alright friends, we have one week left before surgery. Hubby and I are taking a short trip this weekend to get at least one full night's sleep and take a little break from being Mommy and Daddy before D-Day. Yes, truth be told, I feel a little guilty about going away, but it probably is the best thing we can do right now. The boys are staying with Nana and Papa, so pray that all goes well. Also, please pray that both boys stay completely healthy for the next week as we approach surgery.

I was inspired with a couple of truly funny jokes from friends recently, and I have an assignment for all (if you choose to participate). Think of, look up, or ask others for the funniest jokes you can find, and post them as a comment on this post. I will wait until we're at the hospital to read them, when we really need the humor. Seriously, even the worst knock-knock jokes would be appreciated. Let's see what we can come up with. :)

The 99th Inning

After 8 months and 99 rounds at various pediatric offices, we finally have an answer about James' congestion. It seems that the poor little tyke has extremely enlarged adenoids, so much so that they nearly completely cut off the air flow to his nasal passages--hence the mouth breathing. It took the ENT all of 8 minutes flat to look at the chart, talk to me, look in Jim's ears, check the CT and tell me that we would need another surgery. They will need to do an adenoidectomy (say that 10 times fast!), and put tubes in his ears because his entire sinus cavity and ears are full of fluid. They probably have been that way since we first noticed the fountain nose. Of course, it is a really common problem, and a short outpatient surgery, which will fix his snoring, apnea, coughing, runny nose, and hopefully prevent ear infections, which were inevitible at the rate we were going. Yes, it's another 20-30 minutes under anesthesia, but hopefully we'll know exactly how he tolerates that after our big surgery next week. There is no huge hurry for this new surgery, so we will go back in October to schedule it...probably before the end of the year. Sweet baby James will probably have had had 2 surgeries by the time he turns 1, but I can't imagine how much better he's going to feel!

What is incredible to me is that I'm not angry or upset--I'm feeling just flat out relieved and grateful. I'm relieved that we finally know what is going on--after all, this is why we switched doctors before we ever knew anything about the craniosynostosis. And I'm so very grateful that a child who by all accounts should have never gained weight (the doc said he had 'no idea' how this child would be able to eat well), and should have had ear and sinus infections of epic proportions his whole life (he hasn't had one ear infection yet!), has been happy, growing, and not delayed in any way that we can determine. So I go back to Ecclesiastes 3...there is some purpose in this timing.

ENT or Bust

After a restful weekend, tomorrow morning James and I go to see yet another doctor, an ENT (ear, nose and throat doc). We've heard wonderful things about him, and I'm hoping that he'll be able to take some of the mystery out of our our little one's congestion.

Right now the main problem is that not only does he have a hard time with his bottle, but he is having a hard time with the solid food that he seems so desperately to want. If you think about having a horrible cold, all of the time, and how dificult it is to chew and breathe at the same time with a stuffy nose, you've got our James. So, while he looks longingly at our food each night, I've limited him to things that are easily swallowed because anything else tends to just get mushed up a little bit and fall back out of his ever-open mouth with the waterfall of slavia. I'm also hoping that we'll be able to get him some better sleep if he stops coughing at night and through naps.

If you're praying for use, please pray that the ENT doctor will have wisdom in diagnosing and treating Jim's congestion. Please continue to pray that Mom and Dad will be strengthened and renewed each day as we draw close to the time of surgery. Pray that 1 Peter 3:15 would guide us as we interact with parents, doctors, and others at Children's Hospital. Thank you for your ever-present love and support.

The Genie in the Noggin'

Our older son will be 2 in October. His favorite toy is his baby brother, and most specifically his baby brother's head. Really, I'm not lying. James is the first thing he asks for in the morning and after naps, and the first thing he does is run and rub his baby 'bro-bro's fuzzy little noggin. You would think someone had told him that if he rubbed the baby's head he'd get three wishes! It occurred to me last night that I have no idea how we are going to explain that this is an off limits activity for several weeks after the surgery. Seriously, weeks is an eternity to a two year old! I suppose if we were really worried about being prepared, we'd start now, telling our big guy that he shouldn't touch the baby's head, but I think it will be easier to explain when he can see the big scar and stitches. I certainly don't want him to be afraid of the way his bro-bro looks after surgery, but there is no avoiding the swelling and bruises and stitches and scar, so maybe we'll look for a cool book about "owies". Any suggestions?

Fever Free

Praises, praises! James is feeling much better today, and has gotten rid of the fever. As for his Mommy and Daddy, well, a good night of sleep would help a lot, but it might be a while.....

My grandpa, who has lived a long 80-something years, thinks a joke will cure most things. So, in his honor, here's a bad joke for today...

Father: Don't you think our son gets his brains from me? Mother: Probably, dear. I still have all of mine.

Nothing to Fear

Our baby boy turned 8 months old today, which he marked by a long night of crying, and a 101.5 fever. My biggest fear right now is that he'll be sick the day of surgery. He probably has a little virus, but what's to say he wouldn't wake up on the 27th with a similar virus? Then surgery would be postponed for weeks, and every day we risk his brain getting too big for the bones it is confined within. Again I'm reminded that I'm not in control, and that there is nothing to fear but fear itself. (Tell that to my upset stomach, eye muscle twitch and sore neck!).

For Everything There is a Time

Everyone remembers that as a kid, the night before Christmas or a birthday seemed to last forever. Yet, three months of summer vacation would fly by in what seemed to be an instant. Parenting is a little like that....Most moms know that time drags on relentlessly as your two year old throws a huge tantrum in the most public place possible, and I have to admit that it is absolutely crawling by these days as we wait for James' surgery. Yet, those moments when my little guys laugh, or splash in the bath, or figure out how to do something new--those moments hardly last long enough for me to catch my breath.

Here's what I think....Every parent has trials with their children. And of course those trials seem like the longest moments, days, or years. Yet, every parent of a grown child gives the same advice, "Enjoy these days, they will be gone before you know it." So, it must be that parenting, as a whole, is full of far more of the delightful times than is often acknowledged. That is the only explanation I have found for the quick passage of years, and even decades. So we sit tonight, marking the number of sleepless nights as we hope and pray that James will do well during and after surgery. Yet, I find comfort in the thought that our parenthood will be marked by far more joy than these few sorrows.

I'm given as a reminder....Ecclesiastes 3
(better than the Byrds, but you can't find it on YouTube)

A Time for Everything

¹ There is a time for everything,
and a season for every activity under heaven:

² a time to be born and a time to die,
a time to plant and a time to uproot,

³ a time to kill and a time to heal,
a time to tear down and a time to build,

⁴ a time to weep and a time to laugh,
a time to mourn and a time to dance,

⁵ a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,

⁶ a time to search and a time to give up,
a time to keep and a time to throw away,

⁷ a time to tear and a time to mend,
a time to be silent and a time to speak,

⁸ a time to love and a time to hate,
a time for war and a time for peace.

Cat in the Hat

Mom says I'm lucky that I don't have much hair because they might not have to shave it for my surgery. I do have to wear a hat when I go outside for a few months, but that's cool, I think I look great in a hat...don't you?

-Baby James

T Minus 21 Days

Well God Bless our nurse, T, for scheduling our surgery right away, and getting us in at a great time! James is scheduled for August 27th, first thing in the morning. Some friends have asked about the recovery process for James, so I thought I'd list what we were told here...

1 day/night in Pediatric ICU--one parent allowed
4 days in a regular hospital room for recovery--both parents allowed to stay and limited visitors allowed
1 week after surgery he should start to feel better
3 weeks after surgery much of the bruising/swelling will be better, the bones will be set, and he should be back to feeling pretty good.
No helmet and no special protection should be needed after he's discharged from the hospital, which is amazing to us, but apparently not unusual.

A few days ago, I saw a novel tee shirt--it was a sign in the window of a classroom that said, "Life in Progress, Interruptions Welcome." I think that phrase is the best summary of how we feel right now. We have several doctors appointments in the next three weeks, and we have to keep James well (so no YMCA, church nursery, or playing with sick friends), but other than that, we're going to try to keep life on an even keel. We love hearing from all of you--phone calls, emails, comments... If we can't talk, we won't answer, but it doesn't mean we don't want to hear about things going on with our dear friends and family. And yes, we're going to need some help in the first few weeks of September, so thanks for the generous offers...we're planning to take you all up on them!

Please pray that the blood donation process goes well for Daddy, that big brother feels loved and secure through all of this, that Mommy won't lose her marbles (or hair), and that James won't have any complications or long lasting effects from surgery. We'll keep posting all the way through surgery and follow up, and we'll add our prayer requests as needed. Thank you for the outpouring of love!

One Cool Cumber

Today we met with Dr.M, and I have to say, I like the man. He was friendly, patient, and calm...'one cool cumber' as some would say. We did have most of our questions answered, and we're comfortable with the recommendations he made. With that being said, here are some details we know now....

Dr. M would like to see the surgery done sooner rather than later. The possible available dates right now would be August 26, August 27, or September 3rd. We should know by this Friday what the official schedule will be.

James is too old (at 8 months!) to do any of the less invasive procedures. Dr. M will do a cranial vault remodeling, which in English means completely taking the skull apart and reshaping it. The doc says he can do it in 2-4 hours. James will definitely need a blood transfusion during or after the procedure (scary!), but Daddy should be able to be his dedicated donor. Most of the remodeling will be done on the top and back of Jim's skull, but the doc will also work on the bones of his forehead to release some of the shaping that has happened from the metopic suture closing. Thankfully, he should only need one surgery to correct his head shape and release any pressure from his growing brain.

However, the surgery will probably not correct his congestion, so we are also scheduled August 17th to see an ENT. We are hoping that the "million dollar" 3D CT scan of Jim's head will be enough detail for them to see the problem areas in his nasal passages that Dr. M saw on the CT, and mentioned to us today. We are also hoping that our little angel won't have to go through more than one surgery in the first year of his life!

We are grateful that James will be ok, but it is difficult not to harbor anger toward Jim's first physicians for their irresponsible actions in ignoring what should have been an obvious problem, even after we pointed out what we now know to be three classic signs of craniosynostosis. We confirmed today that had we brought him in at 2 or 3 months old, Jim may have had endoscopic or strip surgery, which are less invasive, have far less blood loss, and require shorter hospital stays.

Overall, our experience today was a postive one. Each person we interacted with was wonderfully helpful, and our sweet baby did great, even through what should have been his nap time, and even as he had his blood drawn.

PS: For anyone who has tried to post a comment, but couldn't without a google email or special account, I've changed the settings and you should easily be able to post a comment as 'Anonymous'(in the drop down menu). We just ask that you sign your post with at least your first name, because it's wonderful to know who is praying for and thinking of us.

The Longest Hours

So, why is it that when we most need the hours to pass, it seems as if the sands of time have been stuck together with peanut butter? Our appointment tomorrow has been moved from 9am until noon. I can't be mad...if my child needed emergency surgery, everyone else would just need to wait; and so we will.

Many thoughtful friends have asked about how are 'doing.' It's an interesting inquiry actually, and is just as likely to be met with tears as it is to be answered with a genuine "okay for now." We are human, and of course our biggest weakness now is fear. Yet, I'm comforted by the reminder daily, sometimes hourly, that we are not in control. And if God, who created all of the heavens and all of Earth, and all of the diversity of beauty and power within it, does not make mistakes, then there were no mistakes made on our son. And if He loves our son more than I do, how can I worry? Does it SUCK (as a sweet friend recently said)? YES, it SUCKS. Do I sometimes cry and kick my feet and say "I don't want this!"? Yes. But, my hope is that God has great plans for this trial. So I hang on to my favorite verses:

Now, to Him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Ephesians 3:20-21, NIV

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. Phillipians 4:6

I can do everything through Him who gives me strength. Philippians 4:13

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

Now faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1

Psalm 118, but especially verse 24: This is the day the Lord has made, let us rejoice and be glad in it.

July 31st

Today, after much wrestling with the scheduling department at Cincinnati Children's, we were told we needed to wait SIX WEEKS to see the surgeon assigned to James' case. After calling for an explanation, we were given an appointment with Dr.M, a neurosurgeon, next Wednesday. We should find out what the surgery will involve, and when it will be scheduled at that time. Right now, James has no swelling, bleeding or pressure in his brain. Hopefully we can get everything in the right place before any of that happens. Also, after further research, it seems that James' congestion may be related to the cranio issues after all. The metopic suture, when it is closed, can cause narrow nasal passageways. However, we may need to also see an ENT to confirm what the problem is exactly. We will post again when we have more information, August 5th.

July 29th

Today was Jim's first CT scan. The experience was not pleasant. Due to his cronic congestion and reflux, our 7 1/2 month old angel needed to go under full anesthesia. The anesthesiologist would not allow us in the room, so they took our sweet baby away while he was still awake, and he was awake and screaming by the time we got back into recovery. They had a difficult time with his small airway, so his throat was very sore and he immediately threw up blood all over mom. They told us not to expect results of the scan for 24 hours. On the way home, we called his doc, and they said the scan results were already in, and waiting for doctor review. About 45 minutes later, we got a call from the doc, who said that the sagittal and metopic sutures are both closed. He had already faxed a request for a neurosurgeon consult, and expected that we would be doing surgery sooner rather than later.

As we've been waiting, we're finding as many resources as we can. We have found that Cincinnati Children's Hospital is the best place in the world for James to have his surgery. How blessed we are that we live so close to this awesome facility! Meanwhile, friends and family have already responded with offers of prayer, dinner, company, babysitting, and house cleaning as we need it. We are feeling loved and supported, but still nervous for our little boy.

July 24th

This is the day that I took my baby in for his first check up with our new doc. He has been congested since birth and we were getting frustrated with his discomfort and problems eating. The doctor couldn't help much with the congestion, but immediately noticed the shape of James' head and suggested an x ray. This was the first day I'd ever heard the word 'craniosynostosis.'

We took James for his x ray and by the next day we were told his sagittal suture was probably closed, and that he would need a CT scan at Children's Hospital. After Google-ing cranio topics, I was sick. James' head bulges out in the back, just like the pictures posted on hospital websites for sagittal synostosis. He also had almost no soft spot, and a ridge along the top and back of his head. His first pediatric group had told us not to worry about any of it, but it not looked like he was probably going to need neurosurgery. We immediately sent out prayer requests to our dear friends and family.