Fall

Well hello!

Hope everyone is having a great fall. With the exception of lots of birthday parties, we have had a relatively uneventful fall! Which is good!

Noah is doing well. As I mentioned in the last post, we canceled surgery and felt good about it. God made it clear that it was not His timing for it. Over the last three months though I was starting to feel like his feeding progress had plateaued and Noah even had some bleeding and additional swelling in his already big cheek. I was starting to think maybe we need to talk to his surgeon again... which we still may do, but Noah had a GREAT OT (occupational therapy, aka feeding therapy) appt. yesterday with Keren at Children's. She was impressed and said that he's about at a 9-mo eating level (besides his thin liquids)!! Of course he had a great feeding with her, I told her they are not all that good... but since we've been home he's continued to have two exceptional meals!!! He even ate some deli meat this morning! So awesome!

We're going to wait and see how things go with his cheek before we reschedule surgery. I want to lean on the Lord completely and trust that he'll heal him. It's just so tough. I want to catch this thing before it gets bigger, to prevent even more LM growth. Lots of babies with his diagnosis will have no sign of swelling for years, then a new one can pop up somewhere else in the same area. This can happen even after surgery though. I just don't want any regrets, or to look back and tell God that I didn't trust Him. Noah's had two bad colds and no compromise to his breathing... plus we have seen almost 6 teeth pop through (FINALLY!) in the past few weeks. We also replaced his BARD g-tube with a Mic-key because the BARD was leaking so bad, and with Noah crawling all over the place it was just impossible to stay plugged in during his feeds that last 50 mins! We love the Mic-key, it's got a locking mechanism and has just worked out great.

Ella turned 3 and started preschool a few weeks ago! So crazy! She still flips out when we drop her off, but she loves it. Today she actually cried when I picked her up because she wanted to stay. She goes twice a week, tuesday and thursday mornings for 3 hours. It's been so good for her, and I love the time with Noah. It's so different when it's just he and I. Quiet, too!


Our biggest current prayer request is for Kyle's work situation. Medical bills, co-pays, and deductibles have gotten a little overwhelming these past couple months. Kyle is working his buns off to make ends meet, and our family is suffering because of the lack of time together. We're just praying for God to open a door so he doesn't have to work six days a week, or show us areas in our life that we can save some money and re-budget our funds. We're learning that our time together is so priceless, and our marriage suffers when we don't spend time together. What can I say? We're still sorta newlyweds, right? :)

one year ago

At exactly this hour exactly one year ago today, Kyle, Ella, Lindy and I were on our way to Dr. Kohatsu's office in Poway,CA to find out the sex of our baby!!

We would be moving to Wenatchee in exactly one week.

Just one last visit to Dr. Kohatsu; I was sad she wouldn't be delivering my baby since we were moving to Washington. I even teared up a little. Little did I know, she wouldn't be delivering Noah even if we had stayed in California.

"There's something on his neck... this is umbilical chord... and this isn't. See, this is umbilical chord, this isn't. You need to have another ultrasound at UCSD."

I will never forget those words as long as I live. The day my life changed forever. Sounds cliche but it's true.

At UCSD:

"He will be a very very sick baby, if he survives... about 50% chance survival rate... we have pictures if you want to see them... you have a few weeks if you want to terminate..."

At UW:
"...Do you want to discuss terminating this pregnancy??"

Me: "If you ask me that question one more time, I'm walking out of this office" (wanting to say, I'll punch you in the face).

I can't believe it's been a whole year. Thinking back to last fall, just how scary, fearful, and painful it was. Moving from California to a place where I had no friends to support me and cry with me. Thank God for my mom. Lots of stress trying to find a house, staying at my mom's in one bedroom... all the trips to Seattle. Most vividly I remember driving to Leavenworth for work and just reflecting, listening to worship music, and just breaking down in tears. On several different occasions. Last fall was a very dark time.

But in the darkness, there was light. I felt like I was just clinging on to God. Barely hanging on. My only stability was my faith. My God. My whole world was all messed up. It was truly the "footsteps" poem in action. I have no idea how I survived last fall and winter.

And in the most timely manner, spring showed up. Noah was born, I will never forget the first polaroid I saw of my son. It is still on the fridge. Wires and tubes going every which way and his sweet head tipped back and to the side so he could breathe. And that car trip back from Children's. It was a beautiful sunny day in Seattle the day we drove home on January 30th, just 10 days after he was born.

Slowly, life has gotten easier. Still scary, and his feeding needs can be overwhelming at times, (okay, this is an understatement, feeding has been HORRIBLE lately, we're experiencing major setbacks in this area! Noah was sick a little over a week ago and since then has not wanted to eat ANYTHING. If he does swallow something, his gag reflex is so strong that he pukes up whatever is in his stomach. Eating time is my least favorite, most stressful time of day... and Noah is still eating every 3 hours, 6 times a day! Over it.) But God has still been faithful. It's amazing what I've learned about God and about life this last year. Things I never would have learned without Noah. Everybody needs a little Noah in their life. For perspective, strength, and joy. He is the light of my life. The craziness of the world just seems to melt away when I look at him.

Lord, thank you for the hardest year of my life! Most of all, thank you for Noah. Lord may he come to know you by the character you are building in him, and the miracle of healing we are seeing right before our eyes in him! I used to think the miracles of the Bible were just that, stuck in the Bible. But miracles are happening everyday, right before our eyes, we just need to OPEN THEM!! I want to believe! Help me in my disbelief! Remind me everyday Lord that it is YOU that has spared my son and continues to heal him.


This second picture is from over a month ago... we're seeing lots more wrinkled skin since this picture was taken, it's just the most recent one that's been uploaded! And did I mention that Noah is crawling!? Lots of fun with his g-tube I might add!!!

cancelled.

August was a great month!

One of the most exciting things happened at Noah's OT appointment on the 14th in Seattle. After observing Noah's feed, Keren told us that Noah is EXACTLY WHERE HE SHOULD BE ON HIS PUREED FOOD! I started to tear up! She said that's totally appropriate for his age level, the amount he was eating and the ease and excitement that he was able to do it in. He's grabbing the spoon when it comes to his mouth, trying to be independent and feed himself. He's still not consistent though, every meal is different as far as the quantity he eats and how eager he is to do so, but I was ecstatic to say the least that he has come so far! Because he's totally over the bottle, we are continuing to syringe feed him as much as he'll allow, and trying to introduce the sippy cup. She said lots of practicing swallowing is what's important now to get those swallowing muscles in to shape (since they haven't been working as hard as most babies the past 7 months)! He doesn't do very well with the sippy cup yet, it's too hard to suck the liquid out of a slow flow and a fast flow is just... too fast. So we'll get there. It is such a slow process. Trying to patient, and get excited at the baby steps. YAY NOAH! Biggest accomplishment is that there is no sign of aversion. Thank you Lord. My biggest fear. Funny how fear goes away when faith shows up... (Martha, wink wink!)

We rented a house with Kyle's brothers and sisters on Lake Chelan for 5 days at the end of the month-- 17 of us! It was a blast, so great to spend such quality time with each other and really get to just chat, relax, drink wine, play poker, boat, & swim. The kids had an awesome time, Ella and Noah both loved the water (we had a pool at the house which was sooooo nice), and Ella really progressed with her confidence and swimming thanks to Aunties Lisa & Ashita! Ella loves her cousins, she continues to talk about them. It is really cool to see what a legacy Lee Johnson has left; he truly lives on in his kids and grandchildren. His fun spirit, sense of humor, love for life and his family. Such a great group of people. Can't wait for next year! Kyle always has so much fun with his brothers (duh), I know it was especially special (is that redundant?) for him. Cool to show of his town and new home to his brothers, and of course for them to meet little Noah.

Kyle is so proud of his son.

A week after we got back from the cabin (this tuesday), Lindy flew up from San Diego to spend the week with us. On Saturday after Kyle & I get off work, we're heading to Seattle to spend a couple of days because Lindy's never been, and Noah's got his next OT appointment monday so it just worked out! Exciting month for sure!

And the biggest thing I want to share...

We cancelled Noah's surgery.

Crazy huh.

As I said in the last post, we were not completely at peace with our decision to schedule surgery for November 5th. As time went on Kyle and I both felt less comfortable and increasingly uneasy about it. I kept asking myself and God if it was just normal worry for surgery or if it was something more, my gut instinct or wisdom from God. One of my BFFs Barb was praying that Kyle would make the decision, to talk less of the "mom factor" out, you know, we just worry so much more naturally.

So about 10 days ago I called Children's to make an appt. to see Dr. Perkins to talk about the risks of NOT doing surgery. Expecting a call from the nurse or the scheduler, I was surprised when the doc called me himself. I asked him my biggest question, "Is Noah more likely to need a tracheostomy from swelling during surgery or from the cellulitis infections he will inevitibly face without surgery, especially with cold and flu season just around the corner?"

Perkins said that he is more likely to need one from too much swelling during surgery.

That was all I had to hear.

Noah's airway has always been (and will continue to be) our number one concern and biggest priority in his treatment. Lots of babies with LMs have trachs. They are literally life saving. But of course I want to do everything I can to avoid one. Lots more care needed at home, around the clock, hospitializations, etc. Just a whole other can of worms and more stress that I don't think I could handle right now. So although his eating is not perfect and he's still g-tube dependent, and his LM is big and people stare at him wherever we go, I don't care.

I don't care because he is healing.

Since we've gotten back from Chelan, we're starting to see more extra skin on his neck! There has always been a really stubborn cyst that sticks out front under his chin (Kyle calls it the Jay Leno), well that cyst has shrunk dramatically. So Kyle and I took both of these in to consideration (docs advice + the extra skin) and feel the best thing to do is to just wait.

Oh, the waiting!

I'm choosing to not be fearful this winter about the infections Noah might encounter, even though it does worry me. I'm just praying for God's perfect covering over Noah and that he'll protect him from all disease. With help from Derek's research we're going to pump up Noah's immune system with some probiotics & other fancy (but natural of course) stuff and just PRAY. Knowing that God will carry us through this storm as he has for almost an entire year.

Can't believe it's almost been that long since that first scary ultrasound. But more on that later.

It's late, I gotta get to bed! I'll try and write more after Noah's OT appointment on Monday. His last one was so awesome it's like I don't want Keren to be disappointed, lol, how crazy am I?! Oh, I forgot to mention he is just days away from crawling! He scoots all over the room, in a circle, and can army crawl... but still waiting for the coordinated crawl!

Still appreciate lots of prayers for little Noah. And whoever still reads this, PLEASE show me how I can pray for you. God's been working on me so much lately, with personal issues, and I really want to reach out to anyone who needs prayer, or just a friend. I've been living in a bubble for a long time now and I just don't want anyone to think that my plate's too big to pray for others. I'm learning that I really need some good friends, to lean on and be leaned on, to give and take. Noah is doing EXCEPTIONALLY well, only by God's grace, and I totally know that... and I just want to share with you all about your life's struggles and how God's moving. I'm learning that without suffering and hard times there can be no spiritual depth to a person, no holiness; and without pruning, no fruit.

Just trying to work through some of the battles on my heart lately.

Thanks again for checking in!

Love, Andie

Surgery...?

Once again another month has passed, ahh! It's been frustrating not having internet access or cable, but I have to admit it's been nice not to have the distraction! I realize how much time our family has wasted on both. But I feel bad that I haven't been able to update the blog, above all. Lots going on with Noah.

A few weeks ago we got Noah's first vaccination. We've been putting them off this long because when his body fights an infection, the lymph nodes in his neck swell like all humans. Well, he happens to have a GINORMOUS lymph malformation on his neck as it is, duh, so when he gets an infection, he will often get cellulitis in his neck. We're not sure if it was from the vaccination or if that was just coincidence, but a few days after his shot he had yet another bad infection in his CH. Or LM. Pick your acronym! It was scary, louder breathing, and extremely red and swollen. We called ENT at Children's the moment I noticed it and they phoned in an antibiotic and steriods for the swelling. It takes about 4 days for these infections to subside, and they are a stressful four days! Always checking Noah's breathing, trying to get him comfortable, waking up in the middle of the night to check on him... and I just feel so bad for the little one. Needless to say, we won't be doing anymore vaccinations until after his CH is gone!

A few days after the infection came on we had a previously scheduled appt. in Bellevue with Dr. Perkins, his doc & surgeon. After this bad infection, Kyle & I really started to re-think surgery for Noah. We've been putting it off as long as possible; we of course want to wait until he's bigger for surgery if possible. Some babies with his diagnosis have removal surgery at birth, but because Noah has had no airway problems, there is no immediate reason for surgery. Besides his feeding problems and the infections, Noah is doing exceptionally well for a baby with his diagnosis. Praise God. We know it's because of Him. We feel so lucky and blessed.

Dr. Perkins talked about our three options at this point:
1. schlero therapy
2. surgery
3. keep waiting.

We're not going the schlero therapy route (they drain the cyst and inject a bacteria called OK432 in to it, which causes the cyst to swell and then the walls to stick together, so it can't fill with fluid anymore) for a few different reasons. Not only is it incredibly painful, but it usually takes 2-4 different injections to do the trick, and each time requires a hospital stay to monitor swelling. Plus, it often results in swelling of the tongue (which is really hard to take care of apparently). Plus, as I think I explained before, Noah's cysts are both macro and micro, and this therapy only works on the really large cysts. It just doesn't seem like a good fit for Noah. While it is less invasive than surgery, it isn't necessarily less risky. Dr. Perkins recommended us talking with the docs that do it just to educate ourselves, but his recommendation was surgery.

Our other option is to keep waiting. The problem with this is that we are entering cold & flu season, and therefore more infections in Noah's neck. Ugh. I can't express how scary they are. I try to play it cool and be calm about it, but the truth is I am so scared for Noah when it happens. Last time it happened i went over to my sister's house where my mom was too, and the minute I looked at her I just started weeping. I haven't had these meltdowns for a few months now; I used to have them almost daily. Just so fearful for Noah and what was to come. I feel these same feelings when he gets swollen like this.

The other problem with waiting is that we don't know if his eating would get better if this pressure around his neck was gone. We assume so. Plus the swollen tongue of course. I dream of the day when Noah is no longer g-tube dependent. I don't want to complain about it because without it, Noah couldn't survive. And I'm so grateful to modern medicine for it! But if we can get him off it sooner, I would be... oh my gosh I would freak out! Also, Noah's CH hasn't gotten smaller in the past few months, the doctors said that of course it could get smaller, these things are so weird and have minds of their own, but in his experience he didn't expect it to get much smaller. Not to say God couldn't take it away tomorrow.

---

ALL THAT SAID, we have scheduled his surgery for November 5th. This gives us three months to really pray about all of this, and decide whether to go through it or not. The doctors are not saying it is absolutely necessary, so I am struggling with it. I know I should be totally relying on God and trusting that He will heal Noah, in his timing. I want to believe that, I want to be patient and know that this is a battle of the spirit and not the flesh, I want to be faithful. But I'm trying to be wise too. My mother-in-law pointed out that considering all the risks and benefits is also wisdom that God is giving me. Wisdom to make the right choice based on all my information plus lots of prayer of course.

Everyday I pray about it and wait for an answer, it's like I think I'm just going to hear an auditory YES or NO out of the clouds. I think God laughs at me sometimes, He's like, seriously Andie?! But don't we all feel like that sometimes?

At this point I'm feeling like if I'm not at peace with the surgery, I'll just cancel it. I know I will feel normal worry even if this IS God's will at this time, but it is my prayer that God just makes it very clear if He wants us to wait. I'm also trying to separate MY feelings of just wanting it gone. Trying to find purpose and learn something in the most uncomfortable times in our lives is how The Potter molds us in to what He wants us to be.

Long time!

Hello all!
If anyone out there still checks in on us, I'm sorry it's been so long! Our dinosaur-of-a-computer can't get online and money is a lil too tight right now to be buying a new one. So... I'm at my mom's with the kids plopped in front of the Little Mermaid while I send out a quick update!


Lots has happened since... the beginning of June! Ahhh! We've been using Noah's g-tube for a while now, and I have to admit it's better than the NG tube that went down his nose. But... it's not all roses. About 3 weeks after he got it, it started to have granulation tissue (healing tissue) growing out of the hole in his tummy. It's been sooo annoying. Usually you just have to burn it off with silver nitrate sticks at the pediatrician's office, usually takes 2-3 times. Of course, Noah's body is a super-healer and everytime they'd burn it, it would grow more gran. tissue. So his body is totally doing what it's supposed to, it's not supposed to have an open hole in his stomach! So we've been using a steroid cream to shrink it, which has worked some, but it has not gone away. They said it may always be there, and as long as the g-tube is working and not leaking milk, they will just leave it there. Otherwise they will surgically remove the tissue. But for now, we're leaving it alone! Ahh!

On June 20th (Noah's 5 month mark) we started solids! I wouldn't say he loves it, but he eats it. Still lots of spitting it out, and he's got a strong gag-reflex, but who's not to say that is just normal baby stuff, right? It was a relief when he started eating it, but meal time is still stressful. We haven't seen OT in almost two months so I'm anxious to get started up with them again to start some more aggressive therapy. We have a great therapist in Seattle, unfortunately not here in Wenatchee, so its difficult getting in to her on a regular basis.

The other biggest issue we're dealing with right now is that the cystic pockets that were on the left side of Noah's face have started to fill up again with fluid. It's so odd; it's done nothing but shrink since he was born, and it was seemingly all skin on that side up until a couple weeks ago! We've noticed that it sometimes pushes his tongue to the other side of his mouth, so we're keeping close watch on it. Dr. Perkins said if it gets any better we will have to treat it with steroids and antibiotics like we did with the last infection. It doesn't seem infected this time, it's not red and doesn't seem to be causing him any pain, but he's been fussier at night and seems to have more difficulty getting comfortable. Again, more watching, waiting, and stressing.

I've had to go back to working 20 hrs/week (I was only working 1 day/week) in order to maintain our benefits w/ Starbucks. It's been nice, but exhausting. I'm working the 4:30am shift 4 times a week because of Kyle's work schedule, but it works. Lots of sacrifices for these little ones we love so much... The good thing is that I'm not traveling to Leavenworth (25 mins away), I was able to transfer to a store in East Wenatchee. So that's some relief. Plus I work with a great group of people! It makes those early mornings a little easier...

Ella is 2 1/2 (well, 3 in October) and is just the apple of her daddy's eye. She is such a joy. So sweet to her brother. She always helps me with him, gives him toys, plays with him, calls him a 'sweet boy', sings to him when he cries... she is so understanding. From other parents I've talked to, most siblings of special needs babies do not like their brother or sister because of all the extra attention and care they require... but Ella is the opposite. She is somewhat of a drama queen sometimes, ugh, but we're working through these wonderful two's and she's learning her boundaries. It's so nice to see some of the parenting consistency pay off. I thought those melt downs would never end! Not that they're gone! But they are way better, and she's learning to cope with her emotions. She absolutely LOVES to draw, and she's pretty amazing I must admit! I'll brag about her! I'll try and scan some of her art on here. Someday... :) She loves being outside too, playing with bugs and swimming in her pool... we've got our amateur vegetable garden that she loves to watch grow with beans, carrots, tomatoes ("boe-matoes")and pumpkins. She is in the "why?" stage, oh my gosh, it is out of control! Everything, "Why mommy?" so I explain. Then she says, "But why?" Love her curiosity and her love for life. God has truly blessed me with this sweet girl!

Have I mentioned that Noah is the sweetest boy?? His personality has come more and more alive. He LOVES to be outside, on the rare occasions that he gets fussy, all you have to do is throw him on your shoulder and take him out in the yard. He's gotten really coordinated, playing with toys and putting everything in his mouth. Everyone is saying he's looking more like me, but I definitely see Dad in him, too. He's a hefty 16 1/2 pounds, 76th percentile for height and 21st for weight, long and skinny.

The tube

We don't start using it until Friday, but here's what his sweet little belly looks like now. :(





He loves his daddy!

Chlo-ball

I just realized I haven't posted pictures or even an announcement since Chloe was born over a month ago! What kind of auntie am I? Here are a few I have on hand, not the best, but at least its something. She was born on April 29th, 7 lbs 5 oz, 19 inches long, super healthy! She has traits of both parents obviously, but more closely resembles her daddy which is cool for Steve. I think it has always been special to Kyle that Ella looks like him, so I'm sure Steve feels the same.







Oh, and I had a birthday this last week... (thanks for the perfect lil party, mom & Kath)



And Ella cut her hair herself for the first time.




We came home from the hospital yesterday and doing okay. I'm feeling a little differently about the g-tube than I thought I would, but more on that (and better pics of Chloe) later. :)

Tough Little Man

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

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

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

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

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

g-tube Surgery

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

On a side note,

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

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

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

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

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

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

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

Soccer star in the making!!

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

Consult

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

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

Can't steal a smile!

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

Do you think he looks more like me or Kyle?

40 weeks (and no Chloe yet!)

I took these pictures of my gorgeous sister and her mildly handsome husband (i kid!)yesterday on Chloe's due date. Have you ever seen a more beautiful pregnant woman?!





Hurry up sweet girl!

Swallow Study

Happy Easter!

I hope everyone had a great weekend as we celebrated Christ's resurrection! Love this post about Easter from Angie's blog. She has such a gift with words and just loves God so much. And her love for Him is so uninhibited. Please continue to pray for their family as they continue to struggle with the loss of their baby girl, as well as baby Stellan and their family as they are approaching some confusion and decisions to make surrounding Stellan's heart.

We don't do the Easter bunny at our house, but Ella still dyed eggs (she ate one of the dye tablets, but poison control assured us it was fine!), did an egg hunt and got a cute basket from Poppy and Tracy with shoes, jewelry, and only a few jelly beans! I tried to keep these activities completely separate from the true meaning of this day, but still wanted her to have fun with these American-traditions-that-have-nothing-to-do-with-why-we-really-celebrate-this-day.

Ella is having a tough time again with lack of attention, so it was a nice weekend for her to be able to play in the rain and climb all over her uncle Ben. Uncle Ben teaches Ella the most important things in life, like you can't have books read to you if you pick your nose. :)

At our April 1st appointments it was decided that Noah should have a swallow study done to assess what's going on in there when he's eating; but mainly to make sure he's protecting his airway when he is swallowing and not aspirating. So we had that done yesterday at Children's. It was cool: they make up a bottle with barium (which shows on the x-ray), and then the x-ray itself is like a video. You get to see everything go down. I was nervous about the barium and the x-ray of course, but it is for such a short amount of time and in Noah's case, critical in deciding our next steps.

The good news is that his airway is safe, but we found out that the main problem with his eating is happening in his mouth. The swelling under his tongue seems to be hindering the process. He starts strong, goes for a while, and then we have no idea why he stops.

So...

We will be consulting with a GI (gastro) doc about placing the G-tube in the next month. It seems like it will be a while before Noah will be able to eat completely orally. More on the g-tube later.

Lord, come close.

I am having a tough time trusting God that he will heal Noah. Especially under his tongue. Not only is this causing problems drinking milk, but will potentially cause more problems eating solids and speaking. I could care less about all the love he's got on his neck! Sure they're hard to look at for other people, but not only can they be surgically removed if necessary (eventhough they're continuing to go down!), they aren't causing any problems!

Kyle's faith in this area has been unwaivering. I don't know why I am having a harder time trusting that God's workin' on it, and only in His timing will Noah be healed. I want it gone NOW!

Father, heal my son. Assure me these are not your plans for this sweet child of yours. Bring me peace, help me to trust You. And comfort Noah, God! May he feel no pain, stress, or fear. I know I've come to you with a long list of petitions over the past 9 months or so Lord. I feel like I'm always asking you for something, rather than just resting in You. Forgive me Lord, and help me learn to just trust, be still, and know that you are the One soveriegn God!

Not as planned... but good news too!

Sorry I didn't update after our treacherous 72 hour journey... that actually turned in to about 60 hours.

The first day Noah did terrible. Surprisingly Noah didn't cry much; well, considering his laid back, calm temperament I guess it wasn't that surprising! The second day there was hardly any crying; I was feeding him every hour for about 30 mins though, so that was brutal and I felt so sad for Ella. But he still wasn't making par. Not even close. His daily intake should be approximately 7-8 feedings at 125 mL per feeding. The first DAY he only took 171, and the second 265.

Improvement!

But, he was still only eating 265 mL out of about 1000. He wasn't wetting his diapers and was beginning to get lethargic and dehydrated. I kept thinking, he's gonna do it, just needs a little more time to get a little more hungry. But on Friday he did terrible, and averaged the same he did the previous day. So, he wasn't progressing and it was no longer safe to leave his tube out.

Poor guy.

He was super hungry. He just couldn't do it.

I cried when we put the tube back in friday night. Not because of the small trauma it causes Noah when we put it in, of course that sucks but we've done it a dozen times now. I just felt so defeated. I felt frustrated at Noah, thinking it is a mental thing and he was just being stubborn, wanting his belly to "magically" fill up with milk from his feeder. But I felt better that next big feeding he got, knowing my sweetie's belly was full. He slept beautifully friday night!

He was weighed on monday morning; 11 lbs 7 oz. So he'd lost about a 1/2 pound. Now we have to make up for lost ground and get his weight back up.

--

On Tuesday I had 2 1/2 meltdowns. As I've told a few family members, I just feel like my stress level has been so elevated for so long with no release, that it's really weighing on my body! I've been extra stressed since late September, and although we've seen miracles along the way and fallen to our knees in praise to God, I'm still stressed. My sister came to my rescue on tuesday and got me through that other 1/2 of a meltdown, hahaha!

But yesterday was a good day! We had 4 appts. at Children's. The therapists think there are two main things prohibiting Noah from eating well.

1. Noah's tongue is swollen underneath.

He's able to latch on to a nipple, and he's got a great suck and technique. But he doesn't have as much control with his tongue. I asked the doc if this would effect his speech down the road, and he didn't think so. I was sooo happy to hear this! Unfortunately, he compared this cyst to the qualities of a sponge, and he can't just drain it like the other cysts on his neck.

I'm still going to be really active with sign language with Noah though. I wished I would've kept it up with Ella, but her verbal skills took off so quickly that I got lazy. I want both kids to be able to sign anyway though, speech problems or not.

2. Noah has to hyperextend his neck to eat.

We use a 30' foam wedge that we put on our laps and Noah lays on in order to line everything up, but he still stretches his neck back. This makes it really hard to swallow; just imagine if you & I tried to eat this way. It would be difficult, huh! So he's working extra hard trying to do this, but when I cradle him like how a regular baby eats, he isn't able to (this is how he protects his airway).

The therapists did give me a preemie nipple to use, and he eats much more comfortably now. He did great. He's consistently eating 30-40mL per feeding with this nipple (about an ounce). That probably sounds sooo small! But it is better than he's been doing. And when he's done, he's done. He just can't do it anymore.

So although this was tough news, I feel a different peace today. I was frustrated with Noah for not figuring out that if he's hungry, he's got to EAT by MOUTH! But now I know that he just may not be able to do it... yet.

HIS CYST IS 30-50% SMALLER THAN IT WAS 7 WEEKS AGO!!!

We looked at pics the last time we were int he doctors office, and it was unbelievable. It's weird because we take pics of him all the time at home, you think we'd look back at those and notice the big change. Which we have, but not like this. Maybe it's the lighting in the docs office, or the fact that he's laying naked on the exam table and the purpose of the picture is to capture his malformation in all its glory... but it was night & day unbelievable! We think some of this may be because he was so dehydrated those few days, so his body pulled fluid from the cysts. Docs said they may fill up again, but there is still no sign of it. We are praying for that fluid to stay OUT!

Dr. Perkins expects this shrinking to continue, and we are not scheduled to see him for another 4 months! He is healing. In God's time, not ours.

The therapists are going to perform a swallow study at the end of this month to see what exactly is going on when Noah eats, so that should give us some more answers and direction, and we may consider using some milk thickeners to see if that's easier for Noah to eat.

Until then, we're just working with Noah on the preemie nipple, and continuing to see OT once a week, and his home nurse once a week for weight. We are coming upon a new decision to make. If Noah can't get off his NG tube in the next 6-8 weeks, we will have to put a G-tube directly in to his tummy. Initally I was really against this and determined that we would NOT have to do this. But now I'm realizing that Noah may not be able to do it. Not that I'm giving up. I'm going to work as hard as I can to get him off this tube. He just may not be able to physically do it.

And apparently the G-tube isn't as scary as it sounds. Its done in the clinic and he would be able to come home the same day. Its flesh to the skin and just opens with a small "button". He'll still be able to play on his tummy with no problem too. The G-tube is much less annoying for the baby, and they can't pull it out like how he pulls his NG tube out every day. He hates it!

So we'll see how these next few weeks go, and what the swallow study reveals. Sorry for the long-winded post but there's just so much to report about this little guy!

God is so good, His timing is perfect, and we are just {impatiently} waiting on Him.

The next 72 hours

First of all, Noah has the BEST home nurse, Michele. She's so receptive to me, Noah, and really proactive with Noah's treatment-- not to mention super-knowledgeable and SWEET! After talking with Dr. Baumeister (Noah's regular pediatrician), she wants work aggressively to get Noah off of his NG (feeding) tube. I was thinking, I thought we already were... haha... but it's the intent, right?

We have taken out (and left out) Noah's tube on two different occasions to see how he'd do eating exclusively orally. Both times flopped on their faces for different reasons, but perhaps mainly only because we didn't try for long enough. Sooo... today we are making a commitment to leave Noah's tube out for 5 days and only give him food through the bottle! The nurse said we can expect the next 72 hours to be BRUTAL (grrrreat, super excited for this!), but after that there is no reason that Noah shouldn't be able to regulate himself and eat. I am so excited, but I am on my knees begging you for prayer for these next few days, and begging the Lord for patience! I know Noah will probably be fussy and frustrated, and I just pray that he doesn't get so hungry that he's too exhausted to eat.

It's going to be a long weekend, plus I am headed back to Starbucks on Saturday. I'm going to continue to work 1 day a week so we can keep up our medical benefits and not go on COBRA until July 1. I know it will be nice to be out among adults, but I also know my family needs me at home now more than ever. Between Kyle and my mom I know the kids will be in good hands, and I will only be working 4 hour shifts so I won't have to worry about pumping and just being away for too long. I think it will be a good thing. We'll see!

On a side note, if you feel so led, please pray for the following families and their babies! Kyle's cousin Mike & Lisa (due with their first on April 23rd), my sister and her husband Steve (due with their first baby girl, Chloe, on April 23rd also!), My good friend Reebs and her husband Nick, due with TWINS on April 12th, but could pop any day, and baby Stellan (whose family I have never actually met, but have gotten to know through the blog community-- I know I'm crazy...) but her baby boy Stellan is in the NICU with heart problems and is in critical condition. Their blog is www.mycharmingkids.net if you want to read Stellan's story.

Two steps forward, one step back

The past few weeks have been a little discouraging. Noah hasn't progressed much on his oral feedings. At one point he pulled out his tube so rather than putting it back down I gave him a bottle without it in, and he drank 90 mL! It was SO awesome having him tube-free for a day, but still stressful knowing he wasn't getting as much food as he needed. However... since then he's been getting HORRIBLY constipated and won't eat until he poops. So he's only been taking 20-40mL on the bottle per feeding. Ah!

We are (finally) connecting with OT here in town next week, so I'm really anxious for that to see what we can be trying different. The fact that he ate 90 at one point is encouraging though-- I'm just curious to know why he can't (or won't) do it anymore.

He's smiling more and more though; he always smiles for my sister-- what the heck! We also had his routine well-child 2 mo. appointment yesterday, and his "percentages" are as follows: height = 76th percentile, weight = 62nd percentile, and his head is only in the 16th percentile! Haha, he has a "narrow" head like his daddy... we were cracking up at the doc's office.

Other than his feeding everything else is going awesome! We're anxiously waiting for his next appointment with Dr. Perkins at Children's which is on April 1st, where they'll re-evaluate and decide our next steps (if any). His hygroma hasn't grown any, but it isn't shrinking either, with the exception of the swelling around his eye, which has gone way down praise God!



Me in my "mom of 2" look! This is becoming all too common now... :) I'll try to get a smiling picture this week. Thanks for checking in!

The bottle!

I am ecstatic to report that last Thursday Noah had his first bottle!! He only did the 20 mL (the amount we were doing with the binky training)... but the next day I put 30 mL in his bottle thinking it would reduce the amount of air he took in, and he drank the WHOLE THING! Yesterday I did the same thing with 40... he didn't blink and drank the whole thing.

Here & there he'll only take 20 or 25, but it seems like it's when he's just not hungry (duh). I am so proud of him, I was in tears... we still have a ways to go (his total feed is 110 mL at this point), but I will take any miracle I can get!

This is totally an answer to prayer; it is so crazy that as God teaches me to give more of myself to Him and just trust Him more with all the little (be them unimportant or important) things in my life, how much freedom and peace I feel. My natural reaction in this stress is to worry and constantly think, "what can I do... what am I doing wrong...etc?"

But I'm reminded, "Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. "

Having Two

I guess it's a good thing that I haven't had to blog lately, things have been (relatively) non-eventful, praise Jesus! Here's what we've been up to:

Ella pumping with Mommy... lol

Flowers for Noah that we, of course, told Ella were for her... (Thanks Andrea & Shawn!)

Our biggest prayer request now is that Noah is able to progress on his "binky training" (ugh, I hate the word binky, shoot, I hate pacifiers all together... as my dad calls it, I'm an anti-binkite!) Anyway, for those of you who I haven't already explained this to, the purpose of the binky training is to get him gradually eating more and more orally. Because the pockets to pool milk in the back of his throat are compressed by the hygroma, it's lots of work for him to eat! But, he's up to 15 mL of milk orally at every feeding, which is awesome! Once he gets up to 20mL, the Occupational therapists say he is probably ready to try a bottle, praise the LORD!

Here's a pic of the binky trainer (a pacifier with a hole in it connected to a syringe, so I can control how fast he drinks based upon what his breathing sounds like) and everything else that goes in to his feeding time, including part breast milk, part formula: CRAZY HUH!We found out that babies aren't fed via the NG tube for more than 3-4 months, because they continue to pull it out of their nose. If they aren't able to eat orally at that time, they have to put a hole in his belly and feed him that way. So, while we don't want to PUSH the binky training & feeding orally because we don't want to create a food aversion in the long run, we really want to challenge him to get off the feeder! It is my biggest prayer that we will be able to be off the feeder and eating 100% orally in the next month.

(above) The feeding bag & pump (mounted on a tall pole)

And after that, hopefully eventually breastfeeding. I'm continuing to pump, which totally sucks (no pun intended!) and takes a TON of time, but I know it's worth it!

Noah saying his prayers, and yes, that's Ella's pink blanket (don't tell her!)

Our sweet boy... looks like a mix between Kyle & Derek, huh!? It would be great if my kids looked like me... :) Oh, and did I mention that Dr. Perkins said he doesn't expect Noah's mass to grow anymore!? :)