Here we go again...

Just a quick update for my blog followers not on facebook..

Mason had his well baby check up Wednesday and his ears were infected so they started an antibiotic. They went ahead and gave him his shots.

By the next day he was wheezing so we went back to the doc. He was tested and positive for RSV. So we were a direct admit to Cardinal Glennon for observation (God was really good to allow this direct admit since the ER was filled with over 50 people, most babies with RSV as well and we would've had to wait all night to be seen).

That next day he started getting diarrhea, bad. Turns out he got Rotavirus too (one of the worst kinds of stomach virus), from the liquid vaccine, and so did I, from getting the vaccine fluid off his chin (he took it by mouth and dribbled). He is way worse off than me though :(

He is doing ok but hurting a lot from cramps so they are keeping him on ibuprofin/tylenol. His breathing from the RSV is alright...he is down to 1/16 liter of oxgen from half a liter, where he started. They have been unable to go any lower yet because he starts working too hard.

Sweet boy finding time for a smile even when he feels so bad...

Prayer requests for today would be that he tolerates his Pedialyte and probiotics today and shows improvement tummy wise so we can add back formula slowly and get him some food in there (he is extremely weak). He is also bradying really low, down into the 50s sometimes (heart rate dropping). If he isn't able to get food soon he will need an IV so pray he can make a rapid improvement once we start the Culturelle. They expect us to be here at least a few more days to get him some strength back up. He had a really rough night last night, and feels puny today; he is losing weight and his button is leaking from it.

Micah has RSV too (it's where Mason must've gotten it).  This stuff is hard on him too (emotionally most of all).

Thank you for your prayers, hopefully the next post will bring better news!

One nice thing about the oxygen...it holds the paci in hands-free ;)

"Pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much..." James 5:16

These Are For You, Aunt Hannah!

 

As you can see, the SMILES have arrived! 

They are few and far between, but when they hit, they hit BIG! :D

And oh so worth the wait :) 

His Aunt Hannah will especially appreciate what it is making him so happy ;)

Thank You Lord for this wonderful boy and his beautiful smile!!

Thank You that he could dole out these even when he was sick with a nasty cold!

And...for good measure, he held up his head by himself for about 10 seconds in his Bumbo on his 6-month birthday two days ago too!! :D Progress...we love it!!!

Expect the Unexpected

"Who of you by worrying can add a single hour to his life?...Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own..." (from Matthew 6)

((DEEP BREATH))

Wow. I am hoping that the weekend really does mean we can relax a little. Because every time we've tried to this week...the rug got pulled out. How quickly plans can change...

Here are the highlights...

Wednesday about lunchtime Mason was in the middle of eating when he started crying, and turned into REALLY inconsolably crying for the next 2.5 hrs. He had no fever, he didn't seem sick...but absolutely seemed like something was hurting, and bad. Being completely out of character for him we figured better be safe than sorry so Brian rushed home and we headed to the ER. The roads were bad but passable. Long story short, seven hours, a ton of docs, two x-rays and an ultrasound later, at around 10 pm or so we were relieved to hear that the biggest fears had been ruled out...intestinal blockage or intussusception being the biggest (where the small bowel gets telescoped into the large). They think he may've actually had an intussusception at home but possibly self-reduced it at the hospital since he did not have it anymore on the test but had the "classic" clinical presentation when he arrived. They gave us the option of admitting him because it is standard for intussuception follow up and because Mason was still not happy at the time we left but admission would involve an automatic IV and we figured if the most dangerous things had been ruled out at least for the time, we'd just watch him over night and bring him back if needed. If not any of the original ideas, they thought the biggest possibility was that he had gas-bloat syndrome (due to inability to burp from his fundo) causing so much pain. They said his ultrasound did show lots of air pockets. After he finally was able to eat that night, we headed home...and in the car Mason returned to his happy little self and slept all night uneventfully :) But we heard lots of coughs and fluid coming up into his throat as he slept so we wondered if maybe his fundo was letting too much reflux through and maybe that had caused his pain?

The next morning (my birthday), Cardinal Glennon called to follow up and said they wanted him to come back again (groan....but I'm glad it was just a visit and not an admission!!) so they could do one more test, and upper GI to check the position of the G-tube to make sure milk wasn't flowing into the wrong place, and to make sure the fundo was still intact. So...back downtown, and we did that test which showed no problems (yay! but still no answers on his pain). Then the GI nurse cut away yet another stitch that his G-tube had spit out at us (#3 so far); and wanted us to stop using steroid cream on it for his granulation since it was probably the stitch causing the irritated tissue and maybe now will go away on its own. Then they said nursery follow up wanted to see him too...so down to registration for that and another hour later we were finally on our way home from that, again relieved that all seemed well.

Fast forward to 4 am Friday morning. Time to get ready for Mason's next feed. Brian got up and discovered that Mason's bed was sopping wet. "Not again..." We feared that his extension had popped out (that kept happening with the non-Mickey extensions we'd been given this month by the medical supply, and entire feeds of milk had spilled on several occasions already). I got up to help and when I checked the extender to see if it was disconnected, one of my biggest fears came true: there was his stoma (the hole that leads into his stomach) staring at me, no button anywhere! It had come out completely. It was still hooked to the extension line laying on the bed, and milk had soaked through

Now..normally we could deal with this...we would just pop it back in and reinflate the balloon and restart his feeding. But this was different. When I checked it, the balloon had completely ruptured. Re-using it was not an option. The only backup button on hand was the old one that we had removed a few weeks ago due to it being broken (valve was stuck open so formula leaked everywhere from it). I poured some soda in it and apple juice to try to clean it up enough to function and try to get it into him. But the worst part of this whole situation was TIME...

From everything we could gather in our semi-conscious state (although having a tube out at 4 am will wake up even the bleariest-eyed sleeper!) we figured it was probably at least 4 hours had passed since the tube had come out, and likely even more, judging by the amount of milk that had drenched the bed (his entire 12:30 feeding that clearly did not make it into his stomach) and that it was almost 4:20 when we discovered it. The surgeons had warned us that if this ever happened, time was of the essence, because the stoma can start healing in as little as 2 hours...a healed stoma that won't allow the tube back in means one thing: REPEAT SURGERY....

While it takes me a while to explain all this, it all hit me like a ton of bricks upon seeing that tube out that WAY too much time had passed and we HAD HAD HAD to get it back in RIGHT NOW...because it would take another 45 minutes or more to get down to the hospital and by then the hole would surely be closed....we got the backup tube lubed up and .. of course it would NOT go in :( I tried several times (and this was nothing like the other times I put one in ... it would not budge; then Brian tried...all we were succeeding in doing was making him bleed and making him mad...by this point I was a mess. To think that we hadn't noticed something as important as this, and that it could make him have to have a totally preventable major surgery...forget about composure. I was beyond tears, I could hardly think about anything but GO GO GO, we have to move, or else it is another surgery, more pain drugs, more seizures, more time lost to recovery...yeah. It wasn't pretty :( Sometimes the spiritual reminders are a little quieter than I need them to be, more like whispers than the fears trying to snow you, and I wasn't able to hear very clearly that morning...

But believe me I prayed all the way to the hospital...please please please Lord hold open that little boy's tummy hole with Your finger!! Don't let it close!! Don't let him have to suffer because his mommy didn't catch this problem in time!!

When we got there the nurse tried to put a catheter in to hold the place open and could not get it. :( Mason was screaming about it but she was getting nowhere.

I was about to be sick to my stomach.

She tried again, a smaller tube...and it went in!! THANK YOU THANK YOU LORD!! That was the most amazing answer to prayer...I was more relieved than you can imagine. But she said they would still have to try to get his original size tube back in, which would mean dilating the stoma...(fancy term for jiggling the stoma to stretch it out to fit). Mason was not a happy camper to have his already-tender tummy messed with, but I was one happy mommy that the hole had not sealed up totally, even after that many hours had passed!! The doc was able to switch out the foley tube to Mason's old button and gave us a new backup ... along with some foley tubes of a smaller size so if this incident repeats itself we have another weapon at home to try. We fed him to try it out, and it went very smoothly, so they gave us our discharge papers.

As we are packing up to leave, the doc comes back in..."Change of plans, sorry, now we have to send you to x ray to be sure it's in the right place."

Seriously? He just ate an entire meal...wouldn't he have been in distress or wouldn't we see some puffiness or something if it was wrong? We really didn't want to do another x ray after all he's had, even this week...especially not an unneccesarry one. "Clinically everything looks great, it's just in light of all the issues he's had this week." Well...it took some doing but we got out of it...hopefully they don't think we're trouble parents or something for going against doc's recommendations but he has continued to do great with feedings all day, and we thought that x ray would've been overkill.

So...WHEW. Between that and Micah having a fit of hysteria this week over a tummy ache that I thought would land us in the ER too (and of all things ended up in him needing to PEE for like 20 minutes because he doesn't remember to go when he needs to!!!) I'm sure I have truly earned a nice white head of hair for my birthday lol :)

So thankful God went before us and gave me sanity (just enough!) to survive this craziness and that He kept Mason safe through it all. As you can see he is no worse for wear after all these adventures...

and neither is his big brother, who despite quite a bit of emotional upheaval this week, is just as happy as can be about sporting a new haircut :)

Hopefully the weekend will bring some much-needed zzzs. But I guess I better sleep with my sneakers on, just in case...

Boys Will Be Boys ;)

I wanted to take some time to celebrate the fun times that have been had over the last week...Micah is adjusting to life as the big brother (sometimes it's easier than others) and they've started learning how to play together already. It's clear these two guys love each other to pieces. Here are some of the ways they've been getting over cabin fever...

Heading out into the sunshine to soak up some rays, walking down the street watching the snow melt...

 

 That same afternoon, Micah let Mason have some "soda" for the first time ...

 But Mason preferred the ice cream (check out his hand holding onto that cone all by himself!)

Other times they just like to be near each other...

To explore...

Other times they just like to have a little space for themselves ....

To swing...

To enjoy some snow cream....

To have a little tummy time...

To be silly...

To just look cute for the camera...

 

 

 

But in the end, together is always better! :)

No Greater Helper

The LORD said to him, "Who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the LORD? Ex. 4:11

So this verse tends to make people mad. How could God outright admit that He gives people disabilities and birth defects? How could a God like this be good?

But this verse is an encouragement to me because it tells me that God has all the power in the world...He has a reason for making everyone exactly the way they are, and more than that, He has power to help in every situation if we'll let Him. That was the context of this verse...Moses was complaining that he was "slow of speech" so how could he possibly convince Pharaoh to let him lead the Israelite slaves out of Egypt? But the verse above was what God said in response to Moses' excuse. Basically He was saying "Don't you think if I have power to do all this I have power to help you? And I'm telling you I will!" God had a reason for giving Moses a speech impediment...and out of it came the rescue of an entire nation. I'm sure it didn't make the problem any easier for Moses to endure...but it made him depend more on God than himself so that God got the credit when amazing things happened as a result. And I think that is the point...God's goodness is never in question...pretty amazing that He would intentionally allow us to be broken sometimes, and whether we get fixed this side of Heaven or not, He still wants to use us in ways we could never imagine so that healing and hope and happiness are the end result when He gets the glory. Or think about it this way...would you rather God just allowed the devil to hand out birth defects? Um. Not me. If there is going to be pain and suffering including birth defects in this world (and there will be, thanks to Adam and Eve who gave up perfection including perfect kids when they chose to sin and that's why Jesus came....), I would much rather have the pain and imperfections in me and my kids be handpicked from God than the alternative, knowing God is good and full of compassion, and merciful and is named the Great Physician and He beat death once and for all, than at the hands of the one who walks around "seeking whom He may devour." I shudder to think what this world would look like if that were the case...

Anyway so, I am holding onto that story this week because, Mason's cornea specialist called and emailed me some pics of Mason's eye ... just his left eye, the worse affected one with the "cornea cloud." He confirmed that it is Peter's Anomaly. This in itself was not encouraging to me when I heard it because it means glaucoma usually comes along with it, and 50% of kids with it lose all light reception due to the glaucoma :( But God is bigger than PA and so far Mason's eye pressures have been great, even off drops, and even when he is madder than a hornet at the doc checking him (which usually raises pressure). He offered a transplant for Mason since the cloud covers 60% of his main vision area but warned that in babies they are more complicated, and with his other issues, it is probably not worth the risk...the operation itself can increase chances of glaucoma and/or retinal detachment, plus the issues with rejection are more pronounced in babies and he did not feel he would benefit a great deal from a new cornea anyway if the vision under it is probably poor too, considering the undeveloped optic nerve/retina/iris (the weird thing is Mason uses this eye more than his other one...and if it's true that this "bad" eye is really his "good" eye, then the doc really doesn't want to do the surgery...he doesn't want to jeopardize whatever vision he may in fact have by operating on it. So, obviously we are deferring on this one for a while. He will get his pressures checked frequently, like every 6-8 weeks for some time, and probably need to see a glaucoma specialist. Oh and it just struck me that posting the pic is probably illegal or something even though it's of Mason...so I will take it off if the doc requests it.

Thursday during this snowstorm we went up to the hospital for a day of more appointments.

There, it was on to the ears. We had his audiology test at 8 am (since the hospital forgot to do his newborn hearing screen, and now it's too late so they had to get a more involved auditory brainstem response test); we refused to have them sedate him for this, so we just said we'd get whatever we could while he was napping. What we got was not too encouraging on the surface either.

He has moderate to severe hearing loss in his right ear; the other ear they weren't able to test because he woke up. The right ear we know has fluid in it so our prayer is that this is the only reason for the hearing loss, and that it will totally return if we get ear tubes. Obviously we are praying his hearing is fine in the other ear...we have an ENT appointment the 31st to discuss our options and to try to schedule another ABR for a more thorough test (he'll have to be sedated this time so we want to coordinate with his ear tubes if we can; pray this works out so we don't have to knock him out 3 separate times - for ear tubes, ABR then tethered cord in the spring.

After the ear test we had physical therapy (they want us to add PT at home once a week for Mason's hypotonia-related developmental delay)-we think he'll catch up soon enough; after all he was in the hospital out of commission 3 months and had 2 major surgeries in that time...he just needs some extra time to make up for it.)

Then we had our NICU followup visits with the dietician, neonatalogist and a neuro rep. They are looking into the possiblility of b12 supplements for Mason and we'll probably have them check his vitamin levels when they put him out for his ear tubes. The neurologist agreed that in light of his latest normal EEG and the fact that some of his seizures seem triggerable/preventable that most likely we don't need to go up on his Keppra right now...the usual ones he gets might not be true epileptic seizures like the ones he had in the hospital were, during withdrawal from fentanyl and phenobarb. We'll keep him on his current dose at least until after his surgery in the spring since we know it'll involve more fentanyl.

We left with about 8-10 more appointments lined up (fun fun). But one of them is for genetics on March 1 so we are getting all our questions in order for that (we have a lot).

Otherwise Mason has been having an okay week...he seems to tolerate the increase in milk volume alright, although his g button has been a little more leaky and red despite the change to a new one...so it may be too much for him still. Hard to say if it's that or if he just needs a new size or still needs the cortisone cream (we were hoping to go off that). So many things are trial and error and guesswork...I'm soo glad God is the same today as He was when He told Moses, "Now go. I will help you...!!" :)