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.