FIVE!

This kid turned FIVE today...

...and I have been tearing up about it all day long.

Not the "Oh no, my baby's growing up" tears, but the "I cannot believe what God has done" tears. I spent a few minutes on the blog today reading some posts and many, many reader/prayer warrior comments from late Feb and March of 2009. And I am just IN AWE of how God got us through that terrifying time.

How did we stay so positive? How did everything turn out like it did? How did we not crumple up in fear and despair? How did he make it out without infection? How did we come home in 32 days when they told us it would be a minimum of two months, if he made it home at all? How is he five when there was a 90% chance he would die in his first year of life?

The answer is GOD. And prayer. And that is all.

He is so good and so faithful and so mighty. And the truth is, He would be all of those things even if Jonah had died. But he didn't. And I'm so grateful. So very very grateful.

Here is Jonah this morning, when we woke him up.

He just melts my heart in a puddle on the floor.

And here we are at the mall tonight, riding the train as part of his "birthday fun" night.

We've come a mighty long way, Friends. I stand amazed.

Posts from February of 2009.

http://patriceandmattwilliams.blogspot.com/2009/02

Posts from March of 2009.

http://patriceandmattwilliams.blogspot.com/2009/03

breathless

Do y'all remember that I chose verses for Gabe and Jonah a long time ago? Well, about three or four months ago, I chose Joshua 1:9 for G and ordered his canvas from Red Letter Words.

That's just background for the story I'm about to share. :)

I can't share too much about G's case, which is why I don't post about it too much. But I will just say there are many ups and downs and somedays it feels like it will never end. We had a meeting last week, in which I was given some pretty discouraging news about how long things are going to take. I was upset and after the meeting, went out to the car, and called Matt crying. I just felt discouraged and most of all fearful for G's safety, good, and future. 

I felt gripped by uncertainty and fear, two things I know are not from God. 

After talking to Matt, my sister called. I cried to her and just told her how I was feeling. I vomited all of my frustration, anger, and sadness out on her and told her she picked a bad time to call. :) But seriously if you can't vomit your junk on your sister, who can you vomit on? Or something.

Anyway, Sarah's phone is messed up. It no longer blacks out when she puts it up to her ear to talk. So she is constantly pressing numbers, muting herself, or hanging up on me when we talk. But when she got off the phone with me, this is exactly how her screen looked, and she immediately sent me a screen shot.

There was G's verse. Her cheek had somehow opened her Bible app, gone to Joshua 1:9, and highlighted the verse. She had not been reading in Joshua. She hadn't even had her Bible app opened. She said she couldn't remember the last time she had opened that app.

And there it was. AND GOD EVEN HIGHLIGHTED THE VERSE, FOR GOODNESS SAKES.

I don't think anything else really needs to be said. Beyond a booming voice from the heavens, I couldn't have asked for a clearer sign. God is with us "every step (we) take." I'm so thankful. And full of His peace.

Isn't He so good?

our God of miracles

Very quickly because it's been an exhausting day.


Jonah cried all morning because of the steroids. By the time I got him on the bandage change table, he had been crying for about two hours straight. Because I had his torso bandages off, I could see that he was retracting at his rib cage and his breathing had become much more rapid.


I called my mom to come over and Matt to come home from work.


By the time they arrived, Jonah's breathing had become more stable (still sounded bad, but didn't seemed distressed anymore). Matt and I decided to take him to the hospital. We called the pediatrician and they set it up for us to go to the ER, with the understanding that we would be taken straight back, evaluated by the attending ER doc, and then his ENT would be paged. They had spoken with both the ER attending and Jonah's ENT so everyone was on board. Since he had stabilized, we were told it was okay to wait a couple of hours so we let Jonah take a nap. While he slept we packed EVERYTHING in case we were admitted - everything we could think up he might would eat by mouth, all his medicines, his g-tube stuff (for his water and meds), bandaging materials, toys, the laptop and DVD's etc. All we had left to do was change his diaper when he woke up, and then we would be on our way. For six days he had been having terrible growling type stridor and a hoarse voice. For six days I've been worried non-stop about my Sweet Boy's breathing.


He woke up.


He was breathing easy, no stridor, and had more of a voice than he's had since last Thursday. (I guess he had a blister and it finally popped in his sleep?) That Legion of Angels seems to still be protecting him, even now.


We're never alone. Praise God!


Oh, I guess you got that we never had to go to the hospital? Life is good.


Thank you so much for your prayers. 

gabe's tree

This is our neighbor's VERY newly planted, not at all established dogwood tree. Notice it is blooming like a champ.



This is our VERY established, already here when we moved here dogwood tree that's in one of our front beds. It is coming out of the blooming stage, and is COVERED with flowers and leaves.



This is our dogwood tree that we planted in May of 2008. It was given to us by one of Matt's dad's coworkers after Gabe died. It has hardly any blooms left but is full and green.

And this poor, pitiful sight is the dogwood I refer to as Gabe's Tree. My siblings picked it out and planted it for me the weekend of Gabe's funeral. It is a sad little sight to see. But it is still alive. Jonah and I walked out there and prayed over it last week (when it looked even more bare than this).

And here it is up close. Right on the verge of blooming.

And it really makes me question why this little dogwood is SO far behind all the others? It was actually planted earlier than the other two non-established dogwoods in our yard. It has gotten the most attention and TLC. It has the prettiest shape and, good grief, we even looked up instructions on the Internet before planting as to how EXACTLY to plant it and how much to water it. Theoretically, it should be the best growing, most beautiful dogwood in all the land. So WHY is it lagging behind?

And I wonder if maybe, just maybe, it's not waiting until next week to bloom. Just in time for Gabe's Day. Maybe it's just God giving me a little gift to make me feel like Gabe is right here with us.

Maybe God has made this sweet little tree "late" completely on purpose. It really would not surprise me in the least. Come soon, Sweet Gabe. We can't wait to see your flowers.

surgery scheduled

So... here's the skinny.

Jonah is going in for g-tube surgery on Thursday, April 29th. Right now I feel good about it (well, as good as you can feel about your fragile child going into surgery), but ask me on the 28th. We'll see how I'm doing then.

A couple people have asked what the risks are so I'll give a little rundown (of what I know, at least... I'm certainly no authority on all things g-tube.)

So the positives first. Jonah will have a way to eat/stay hydrated no matter what. If he's in a mood or sick or has blisters in his mouth, we don't have to force him to eat orally. He can stay hydrated no matter what. After this past week, I realize just what a big deal that is. Hopefully this will save him from many ER trips and IV's in his future. I could visibly see, this past week, the damage not being nourished did to his skin. He's healing well now again. It will be a way to give all his meds (he's currently on four meds, two vitamin supplements, and Motrin as needed) and that nasty Polyvisol with iron (which I've currently stopped in efforts to make his bottles as positive and good-tasting as possible). We also need eating to be positive for him. I want to make it fun and enjoyable, not have to force it down his throat. We're never going to be able to encourage solids, juice cups, and happy bottles if it's always so forced. After this week of coming at him with bottle, every juice cup known to man, popsicles, and even syringes in attempts to keep him hydrated, he now screams and tries to climb his way out of the highchair every time I put him in it. I've basically undone all the "the highchair is a safe, fun place to be" work we've been doing over the last month or so. Frustrating. LASTLY (and very lastly), it will make our lives so much easier and less stressful. A fellow EB mom emailed me this week, and I could identify with everything she said about the feeding issues. They chose a g-tube for their son. She said, "on the days he is sore and hurt, I drop the Pediasure in the tube and instead of fighting with him for hours, we cuddle and watch a movie in peace... A huge emotional drain was lifted..." I want that. Jonah having a g-tube will mean that I am a better mother and wife. I can handle the blisters and dressing changes, but stressing every moment of every day about whether or not he's going to get enough, stay hydrated, gain weight - it's a lot. THAT is what about sends me over the edge. And we've been dealing with it since the day he was born. Knowing he is nourished and healthy and gaining weight is going to lift a cloud of stress and anxiety from my shoulders - from our lives.

Now the risks or potential complications. Jonah will have to have an IV placed. Thankfully, he'll be asleep at that point (I think) so at least they want have to wrestle him and mess up his skin even more. It will be more of a problem once he wakes up. Jonah will have to be intubated. This is probably the biggest risk to him. The tube going down his throat could potentially cause blistering in his trachea. Plus it will be hard to secure since he can't have adhesives on his skin. Our anesthesiologist (Dr. S, if you want to pray) has talked to the anesthesiologist in Cincinnati and has all the EB friendly materials on hand. All of the other risks are mostly post-op - risk of infection, risk of leakage, mostly just risk that it will irritate and blister his skin. If we can just make it through surgery, I think we can deal with everything else as it comes. We just don't want him to have complications so severe he has to go back in the O.R.

So, that's where we are. Lots of pros. Risky cons. Still probably the right thing to do. In the nature of Jonah, I'm sure he'll start eating like a MEGA champ between now and then to totally confuse us and make us doubt our decision. That's just how he rolls.

Since this is already so ridiculously long, I'll just go on. Last year I wrote this post the night Jonah was going to have to get a PICC line in his neck. Matt was sick and having to stay away from the hospital and our house in efforts to keep us from getting us sick. Jonah's arterial line was on the verge of coming out of his belly button and was not safe for feeding anyway. There was no way to nourish him. It was a choice between putting in the PICC line or just having faith he would start eating the next day. He hadn't yet started eating substantially on his own. That same day he had pulled his N-G tube from his stomach and had choked himself on milk (the tube was up in his throat) in front of my face. It had been a HORRIBLE day. I was on my way home, sobbing, terrified, feeling so anxious (understatement) about the procedure he was to have overnight. I was literally heaving with sobs and yelling to God on the way home - that He would save Jonah from the procedure or help it go flawlessly, that He would protect him, that he would give me peace with the decision I had just had to make.

Let me just break here to say that I have had very few experiences in my life where I feel like God is talking directly to me or that I've physically, undoubtedly felt His presence. I know that God works this way, but I think I'm pretty closed off to it - so wrapped up in myself and my circumstances - that I have a hard time letting Him in. This is all so you know that I am not writing this lightly...

So I'm going down the highway, screaming at God and sobbing. I've watched my child choke. Matt's not at the house. I feel completely alone and surrounded by demons. I was low. And as I'm about to get off our exit, mid-scream, I stop. I feel a complete and indescribable peace come over me. I didn't hear words, but I undeniably felt Him let me know that everything was going to be okay. It was in His hands. I didn't need to worry anymore. I was completely calm. I went home and went straight to bed without tossing and turning a bit. The doctor himself called me at 3:30 am to tell me the procedure hadn't worked. They hadn't been able to get the PICC line in. And I said, "Okay then," felt completely sure and peaceful and fell right back to sleep. And the next day he started eating. It was amazing, and I knew, without a doubt, that God was with me. He was in control. Whatever happened, it was going to be okay.

And that's what I'm praying for now - that the choice will be clear, that God will take it completely from me, that He'll protect Jonah, that He'll give us that indescribable peace with our decision. Logically, I know it's the right choice for Jonah's health and well-being.

Now we just need our hearts to be at peace with all of it.

The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Father, we are thankful. Please guard our hearts. Give us YOUR peace.

dedication sunday

Today was Baby Dedication Sunday at church. Wow. It's been a long road to get here. Last year, on this Sunday, we played hooky and stayed in bed. I knew I wouldn't be strong enough to sit through the service, looking at all the beautiful, healthy, alive babies that had been born in 2008. The weight of Gabe's absence would have been overwhelming.

But this morning, this morning, God finally gave us our day.



Mike (Elder and Sunday School Teacher Extraordinaire) said a little more about Jonah than the typical "name, parents, grandparents" info. He had asked me to email him earlier in the week to let him know what we'd like shared. I knew there would be many folks in the audience who either didn't know about Jonah or were guests, so it was important to me that things be explained a little. Anyway, he explained about Gabe dying and then Jonah being born with EB. And when he gave the stat about the mortality rate being 87% in the first year of life and that Jonah would be celebrating his first birthday on February 27th, the place broke out in (what seemed to be, to my mommy heart, thunderous) applause.

And it was beautiful.

(And I cried.)

Peyton took some video for me, but I can't post it because a) I don't know how to post video recorded to a DVD, b) it is long and I would have to use Vimeo, and I haven't had time to figure that out yet, and c) I have a new video camera and haven't figured out how to finalize videos etc. (It sure used to be easier with those huge video cameras and VHS tapes. I really wish I was tech savvy.)

Anyway, it was a great day, and I can't really put into words what it meant to us to finally be up there, with our baby, committing ourselves to raise him up to know and love Jesus. Preacher Bill kept calling us, the parents, "custodians," explaining that our children belong to God, and we are just the temporary caregivers. Part of the commitment we repeated was that we understood that our kids were only ours for a "short while" and ultimately they are God's.

I think we're just a "show the love" filter - loving our babies the best we can so they'll know what a relationship with God can offer, which is infinitely more than the love we can show them. And I want Jonah to always think, "Can anyone possibly love me more than my mom and dad? That's some kind of love."

I love you, sweet Jonah. I'll never forget today for as long as I live. You did great, and your Mommy held it together pretty well too, ya know, considering.

thank you

Every Wednesday, as Jonah allows, I like to try and write down a prayer for him in a prayer journal. Partly it helps me focus and say all the things I need/want to say to God and partly it's for him to read when he gets older. I'm not saying this to boast or anything, but I just wanted to share with you part of the prayer I prayed on November 18th (consequently the last time I was able to write one down until today... did I mention that Jonah doesn't nap?).

(Keep in mind that Jonah had g-tube surgery scheduled for the very next Wednesday.)

I'm weary, God. Weary of struggling to feed him, of fighting him every day. I just want to be able to spend happy time with him. God, if you see fit and would allow it, can you intercede for us and make this tube unnecessary? I pray that he will eat like never before, God. Please hear me. Give us this miracle.

Jonah ate 32 ounces today, gushed about three, so still got around 29 ounces. He gained 12 ounces this past week. There is no g-tube anywhere in his immediate future.

And what do I say to God now? Thank you? Man, it just sounds so cheap. How do I thank him for keeping Jonah out of surgery, a 180 turn around as far as how and how much he's eating, and for this miraculous weight gain? How do I thank him for answering each and every one of my prayers above and beyond what I could have imagined? How do I tell him how much it meant to me that I just fed him and put him to bed without him uttering so much as a whimper? He took his bottle while awake, eagerly, and fell peacefully asleep while drinking. I was able to spend "happy time" with him. I enjoyed feeding my child and he enjoyed eating.

How can I ever say thank you enough?

Isn't it wonderful that we serve a God so full of grace and mercy that we don't ever have to (and can't ever) do anything enough? What a relief that I can say thank you and that it is enough. Not because of anything in me, but because of the grace He offers and the sacrifice he made through his Son so that I never have to be enough.

I'll never be able to say thank you enough. I'll never be grateful enough. I'll never be good enough.

Enter grace.

Now I don't have to be. Shwoo. What a load off.

Thank you, God.

yet another miracle

Wow! What a day! When the nurse took Jonah's weight, and we saw what it was, I just started crying. Jonah was looking at me like I was a crazy person. Isn't it funny how we, as parents, tend to FREAK OUT (with reason... most of the time anyway), but all the while our kids are like, "It's cool. Whatever." So nonchalant. He never even acknowledged the fact that he was pushing me (not really him but the circumstances) to the edge of a mental breakdown. Sweet, oblivious, 18 lb 3 oz child. How I love thee!

And just to clear things up for those of you who have just begun reading or don't know much about EB - You may think I'm crazy for talking g-tube for a (previously) 17 lb 11 oz eight-month-old. And if he were a "normal" baby, we would be. But the problem is not how much he weighs. The problem is with his growth curve. Any time he starts falling off his growth curve (and a month without gaining any weight was doing that), we have issues. There's a lot to consider with EB, but nutrition is #2 (I consider #1 to be infection). Like I said in an earlier post, once EB kids get behind, it's a real struggle getting them caught up. They need MANY more calories than "healthy" kids, and their bodies require lots of EXTRA to heal the blisters they do have and to regenerate new skin. Healing takes a lot out of you.

So... I hope that explains the urgency of the last couple weeks. And there is still a great chance that we are not out of the woods. I don't think this is the last time we'll be dealing with this (although God can do anything, so we wait in hopeful expectation), as there is so much to consider. G-tubes are good for so many reasons for EB kids - adequate nutrition, a happy alternative to shoving lots of meds and vitamins down your kid's throat, and one I've thought about a lot: a way to nourish them if they fall down and hit their lips or mouth. Can you imagine? Big blisters, days of healing, and the inability to eat. I can see why many EB parents get them. Actually, the idea of the g-tube itself sounds pretty good... it's just the hospital stay, the surgery, and mostly the intubation that scare the you know what out of me.

But anyway, for today I am SO happy, SO grateful, SO completely amazed at what God has done over this last week. EIGHT OUNCES!!! Wow! The most he's ever gained in a week is six ounces. And I just love you guys to pieces. Ninety-eight comments on a post about my kid gaining eight ounces! I can't say enough about what a great support you are to us, and to me especially. Knowing that Jonah is being prayed for all over the country and the world gives us so much hope and strength. We feel so blessed that God has given us the gift of YOU! Again and again I ask for you to pray VERY specifically, and again and again, God says, "Okay. Since SO MANY of you asked, I'll do it." You can just back and read my daily prayer requests from the NICU and see directly how God answered each and every prayer. Isn't that amazing? So many times God answers prayers or works in our life, and either we're too busy and miss it, we chalk it up to coincidence, or we realize it but then forget about it a week later. I am so BLESSED to have this blog. Not only do I have a record of Jonah's life and medical journey, but most importantly, I have a written record of God's miracles in his life... in our lives. That's just so neat to me. Sorry, I know I'm rambling. I'm just so excited for the day when Jonah can read (and truly understand) where he was, how far he's come, and the many, many things God has done for him.

And maybe by that time, he'll be completely healed.

Faith as a mustard seed...

It's coming, friends. Just you wait and see.

(My friend, Katie (Quinn's Mom), took this photo of Jonah and me on the hayride at The Pumpkin Patch. I just had to share it. She did such a good job. Look at that sweet face!)

PRAISE GOD

The nurse just came and took Jonah's weight.

After a month of not gaining even one ounce, Jonah weighed in today at:

18 pounds and 3 ounces

That's an EIGHT ounce gain from last week!!!

Praise God!

the nature of miracles

So I was already planning on doing a post on this topic, and had been thinking about it A LOT lately and trying to decide what I actually believe when my friend Jill, who is battling ALS, wrote this post. It was actually pretty crazy (and I'm sure not at all coincidental) that we were thinking about the same things.

* A side note before I get into all of this - I think Jill is one of the most courageous, honest, and amazing people on the face of this planet. I won't say she's strong or an inspiration (because I know that she doesn't feel like it), but I admire so many things about her, probably the biggest ones being her transparency and ever-growing faith (no matter how that manifests itself, Jill). *

I was talking to a friend the other day, and she said she doesn't think God performs miracles like He did back in Bible days. She said she thinks He did it that way back then to confirm the Word and that Jesus was, in fact, the Son of God.

I hope that's not true. I NEED to believe in miracles. And I'm not talking about a Stepladder Babies sort of miracle or even a Gabe's Message sort of miracle. I'm talking about an out and out God snaps his finger and takes away Jonah's EB sort of miracle. Because, honestly, I think a miracle from God is more likely than a cure. I'm not trying to be a pessimist or a defeatist, but if Jonah has the most rare form of an already extremely rare disorder, why would the research money go to curing his type? (Junctional is only 10% of EB cases.) And I know about the bone marrow transplants that are being done (and successfully so), but that's only for Dystrophic and, right now, only for kids who have a sibling match. And bone marrow transplants are no joke. They are dangerous and risky and no easy fix, to be sure.

I beg God for a miracle all the time - complete and total healing. I know He can do it, but will He? And I feel like I have so much faith that He can, but I often doubt that He will. I think about having faith like a mustard seed to move mountains, and when I think about that verse, it really does make me think that maybe He doesn't do that kind of miracle still. Because I feel like I have at least that much faith, and here Jonah is... so sick. And if He does still do that kind of miracle, who gets healed and who doesn't? Why hasn't he healed Jill? Why is Stellan still sick? Why did Kayleigh die? I know that my human understanding just can't get it. I know I'll never understand all this pain.

I just want to scream at all those Bible people who, no matter how many miracles God did, they still doubted. I mean, he parted a sea for crying out loud. He healed the lepers and only one came back. I would do anything for God to heal Jonah. I would dip him in a river seven times, I would lower him through the roof, I would travel across the world, I would crawl to touch the hem of his robe. He could do it in person. He could do it from afar. I would believe. I do believe.

But I still don't get it. Is it selfish to pray for healing? For a miracle? How do I pray, "Your will be done"? That is so scary to me. I know that's what I should pray, but rarely ever do I have the guts to pray it.

So in the meantime, I pray that God takes Jonah's pain away, that his face will continue to have more good days than bad, that he'll eat, that he'll resist infection... that we'll be strong enough to persevere... that we'll be able to do enough to keep him safe.

And of Him who is able to do immeasurably more than I can even ask or imagine, I ask for a miracle... even if it is selfish or not in line with His plan for Jonah, one thing I know for sure is that He understands why I have to ask anyway.

still no blisters

We did dressing change today around noon, and STILL no blisters! Woo-hoo! I'm still not quite ready to say we're in the clear, but if they still haven't appeared by tomorrow, I'd say we should be all good. I'm so happy to think that there may not be damage. I mean besides all of the pain to Jonah, and the difficulty to us in having to lance and drain, lance and drain, lance and drain, logistically it would just be really hard since we're going to the beach this weekend and all. I'm thinking they would have shown up by now, but not certain. I'll let you know tomorrow. Thank you so much for praying. I really will attribute this one to a MIRACLE, because there's no way it would make sense for him to not get blisters. He can't even rub his face without blistering, and this was a lot more rough than that.
****************************************

UPDATE: PEOPLE, please. Certainly you must know that I had already checked Kohls,Target, and Walmart before the mall for bathing suits. NOT check Target? Who do you think I am? Silly, silly. Have you learned nothing?
(I was disappointed with Target's selection of TANKinis although I did find a dark green one there I think I've decided to keep. Kohl's had absolutely nothing in the sizes I needed, and I didn't like Walmart's selection nor did they have my size)

On another note, Jonah went to the mall again today. I am NOT a mall girl. In fact, I grew up hating the mall - the crowds, the popularity game, the high prices - gross. But now, now I'm growing fond of the mall. A place we can go where it is very well air conditioned with lots to see and do. I'll probably have my Christmas shopping done by October. Jonah, on the other hand, likes to sleep in the mall, which I must say makes it EVEN better. (Oh yeah, somebody posted a long time ago all the places in the mall where they have feeding areas, but I can't find the post. Can you leave that comment again?)

The reason for my subsequent mall trips? Bathing suit shopping. Don't even get me started. I'm a 10/medium top and a 6/small bottom, so either I have to pay for a set that I can only wear half of, or I have to buy the separates and spend $80 (at least) on a suit. So frustrating. And I can't tell you how many times today I'd find a top I really, really liked only to search the whole store to find a bottom to go with it to no avail. So after buying one top that I think I can match with a set of bottoms I already own, three hours later, we returned home. I can probably wear a couple of my suits from last year, but let's just say that now that I'm breastfeeding, they are going to fit... er... um... a little... differently.

I'm excited about the beach, but also pretty stressed about all we're going to have to pack. I started making a list, and I'm already on page three of JUST Jonah's stuff. There's no way it's all going to fit in the car, but one of Matt's coworkers is going to let us borrow a canvas rooftop carrier, so that should help. I'm also nervous about how he'll do on the actual trip considering the farthest he's ever been is Chapel Hill. We've decided to head to Matt's parents in Florence on Friday to break up the trip, and then we'll head on to the beach on Saturday. We'll get up Friday, finish packing, do dressing change, and then hit the road. I'm not sure how we'll work dressing change on Saturday, although I would prefer doing it at his parents before we head to the beach. With unpacking and fireworks etc, it would just be nice to have it out of the way.

Well, I'm gonna go. Lots to do, and I probably need to share Jonah duties instead of hiding in our room, pretending I'm still pumping. Muah-ha-ha! Back to life. Back to reality. Back to wonderful.