We Love THE JEREMY PROJECT :)

When Mason was born, one thing I was most sad about was we were unable to get any newborn pics in the hospital. I had envisioned a special session soon after we got home...but then we didn't go home. And still didn't. And STILL didn't. Three months later we FINALLY did but we didn't really have a newborn anymore. But what a blessing to find out from Footprints (a Cardinal Glennon program that acts as a "voice for children with complex medical needs) that a wonderful group of photographers had dedicated their time and services to kiddos like Mason and their families. They would be able to come to our home and take pics of our family as a gift. Along with the prints sent to us by our photographer, Martha Lafata, was a note that said something like this: "The holder of this CD has the right to print or reproduce  these photos in any way the holder desires!" WOW. So without further ado we want to share these portraits she took of our sweetie pie, and the rest of us too. Thank you to THE JEREMY PROJECT, so much, for making this mommy's heart smile!! And thank you to Footprints for hooking us up!! :D

 

Go ahead...show some love to THE JEREMY PROJECT on Facebook and read up on the stories of other families and what they are dealing with. What a special ministry this organization has!!

Diary of a Wimpy Mom (with an all-powerful GOD!)

So. It has been WAY too long since an update as usual. It has been a hard hard hard few weeks since Thanksgiving week. I say hard because if any of you know anything about me, it's that I physically cannot deal very well with pain and stress... not my own or anyone else's either. Starting in 3rd grade I had my first "episodes" of passing out - it was while watching some guy's arm catch fire on video for a stop-drop-and-roll first aid class at school. (Leave it to Bri to say "Oh yum, pizza!" at the sight of the third-degree gore lol.) Anytime I was stung by a bee, or stood still for too long, or got a shot, or IVs, or sunburned, or whatever...if pain was involved, I was checking out for a while. Once the stress of repeated IVs was so bad I passed out and had a seizure too. Anyway...it is for that reason that I did not become a pediatric optometrist or any other medical professional (because it is not the actual site of blood that disturbs me - I can look at dead stuff all day, disect, whatever...but LIVING people experiencing pain that I can do nothing to stop?? NO WAY. FORGETTABOUT IT. You will be scraping me off the floor all day long. I have ZERO TOLERANCE for severely hurting people because it rocks everything I am so bad it literally makes me unconscious. Prolonged stress is torture...

All this to say, what a shock that the enemy of our faith (that roaring lion who walks around seeking who he can devour) has decided to go after me exactly where I am the weakest...where day in and day out I have had to watch this tiny person, my own son, who I love more than anyone can  possibly comprehend, hurting in ways I cannot even imagine, and being absolutely powerless to make him feel better. Please continue to pray for me, for physical and mental strength to be the mom I need to be for Mason and Micah, and to stand strong when I am exhausted on every level and do not want to give in to attitudes and fears and spiritual attacks that threaten to crush me sometimes.

In spite of it all, it is so obvious to me that you have been praying...just when we have felt the lowest, people have swooped in to lift us up in ways we cannot even comprehend! Our church family continues to blow us away with their generosity and love. People we've never even met have flooded us with cards. And packages. And encouragement beyond anything we couldn've imagined, and right when we need it most. The timing has been surreal, and we cannot thank you enough... it is so clear to us that God is right here with us, walking through this and showing us His unending love through His people!! I am so thankful He is...otherwise I could not have gotten through these last two weeks.

Thanksgiving week Mason got congested. BAD. He could hardly breathe. The cause of the "goop" could've been anything ... a virus (Micah had one). Allergies (he'd just started a new formula with higher milk content/probiotics). Reflux. (He started retching 2-3 times with every meal, before or after or when his stomach was totally empty, (and by retch I mean, his whole face goes beet red, and he dry heaves so loud the whole house can hear him and he chokes/gags/struggles to breathe through the afternath...we tried to suction him often to keep him clear, but that triggered more retching. It was heartwrenching is the only way I can describe it; the pediatrician gave us more reflux meds but of course that does not stop reflux, it only keeps it from burning. He had 3 seizures. He stopped breathing for one for over 25 seconds. He had another EEG which was "normal" and so they did not change or increase any meds. Sometimes it seemed like his tummy would empty way too fast and he'd scream in pain during a dirty diaper. Other times, it was like his tummy took too long to empty (especially during the continous feeds, which were only 50 mLs (just over an ounce) an hour. We still did not have insight from a GI doc who can't see us til Dec. 21. And he was still getting too hot, too fast. We wondered if he had some kind of mitochondrial issue going on due to his nervous system dysfuntcions and not being able to regulate things well.

So we tried everything we could think of. We read retching stories from other fundo parents online. We didn't find much hope for relief - many are still dealing. His surgeon just apologized, "There are no easy answers for this situation." While there are drugs for potentially helping retching, they have severe withdrawal potential too. Or they say, "do not use this drug if you have seizures." So we asked his dietician and surgeon if we could drop back his calories and speed with which he was eating. (He was getting 110 mLs (not quite 4 oz) in 30 minutes, then a continous drip at night, which he hated, and would grunt in constant discomfort as if begging, "TURN IT OFF" until we couldn't stand it and did -the audio is below);

So anyway, we went down to 95-100 mLs and let it run more over 45 minutes and stopped doing any continous feeding; now he eats every 3 hours, day and night, by feeding tube.) We asked to be switched to Neocate, an amino-acid-only formula to prevent any possibility of allergy. And we prayed that time would heal his throat so that he could swallow better and get over his retch reflex enough to eat without gagging. After about a week he indeed seemed to be slowing down the retching. We found a nifty gadget called the Nose-Frida that allows for less-invasive nasal suctioning (beats the bulb by a million!) and got us through some tough times. He could finally change positions without his eyes filling with tears and getting a case of the hiccups. And the nose/throat congestion began to ease. Yayyy!! If his throat his clear he doesn't retch as much, doesn't seize as much, doesn't stop breathing as much!

 Things started looking up. I was optimistic that maybe the docs had over-reacted on his seizure problem - that maybe he didn't need to be on anti-epileptic drugs after all (which themselves can contribute to more seizures and developmental delay and only should be used in cases of true epileptiform seizures). If he has the same deletion as me, and IF that deletion is contributing to his problem, it made me hope that maybe his seizures were vagal in nature (caused by misfiring of vagus nerve, due to pain (like reflux), stress, sickness/fever/heat/obstructed-breathing issues. Vagal seizures like I had do not benefit from anti-epileptic drugs - they benefit from avoiding the triggers. True EEG-proven seizures are not triggered. They just happen. Mason, because of his Dandy Walker variant, is automatically more prone to true seizures than the average Joe. But his seizures so far seem to be triggered by things, with the exception of the ones he had while withdrawing from drugs. I hope so because it is his only hope to get off the AEDs and have more chance for a normal development.

But avoiding triggers, even if it's just vagal seizures, mostly, will be no picnic. Avoid stress and sickness? We found out at Cardinal Glennon Wednesday that he has an ear infection. A bad one.

Between doc visits at the hospital, all geared up with the feeding pump "mobile stroller unit" in action.

He's had 3 seizures since yesterday since he's sick. Today he had a seizure while simply playing "slinky" with his vision therapist. He has surgeries looming - one for probable ear tubes (no way do we want to go through a year of suffering with non-response to antibiotics like his big brother did, and jeopardize his hearing when we already know his vision is severely compromised). He has also been referred to another specialist for a possible cornea transplant to try to salvage whatever vision he may have. He may need his tethered cord released (we'll find out next week when or if). This recipe is not a good one for someone in whom stress plays so big a role in his overall health. If you could see the level of pain and distress he has to go through just to have an eye exam (because of how photosensitive he is), it would make you cry. Not to mention the ordeal of IVs in a boy with microscopic veins. Please pray for us for direction in knowing what to do in each of these situations that have no clear answers. Please pray for his retching to improve. For the congestion to stay gone. For the ears to stay clear now that milk is not in the picture. For the seizures to be controlled much better and for him not to need more drugs. Pray for us all to stay healthy (we all have viruses now). For others in our family whose developing babies could be affected by a similar syndrome, whatever it is, if it is inherited somehow, and for guidance for the docs to figure out what it is, if so.

Pray for Mason's comfort. Pray that his stress and pain is minimal. That he is able to play and laugh and be able to thrive and grow into a fun-loving little boy. That this smile you see here which he manages to summon up even through the worst of his ordeals, will be something that will become second nature..that he will FEEL like smiling more!

Lord, may Mason's precious smile remind me that "our God is bigger than I am! Strongest of all! He is able to make the summer turn into fall! He controls all that happens...His power is plain to see, and I know I can trust Him, for with His power He cares for me!"

PS - I have to remember this even now. I just discovered Mason has a dirty diaper leak. Now normally this would just be one of those "yuck" mommy moments. But with Mason it is not just gross, it is dangerous. The poop completely soaked his dressing for his unhealed G-tube wound. PLEASE pray that the combo of being on antibiotics for ears, a triple antibiotic cream freshly applied and super careful cleaning of his site will be enough to prevent infection. His mommy is not taking this well...

Leaning Hard

The first week home has been so emotional...joy that's hard to explain from having our baby right here with us to love on anytime we want, fear and stress from the usual worries of being a parent all over again, that doubled a few times over, learning the extras of gtube care, dressing changes and pump feedings, oxygen tanks, heart and apnea monitors, etc etc, trying to navigate through the new world of back and forth to his doctors (specialists in opthamalogy, cardiology, neurology, neurosurgery, genetics, urology, surgery, GI (or not - nobody knows who exactly is in charge of helping us with his Gtube and diet changes, pediatrics, plus setting up early intervention programs for occupational and physical therapy for feeding issues and developmental issues, vision therapy, on it goes. It is a lot to swallow ... and a new challenge or adventure every night. Here are some first-week "initations" we've experienced so far:

Tuesday: after carefully mixing up 24 hours worth of the hospital dietician's formula recipe (30 oz of water to 18 scoops of powder to make it 24 calorie/oz instead of the usual 20), and storing it in labeled bottles so we knew he was getting the right amount at the right time, we got ready for our first night home together. It didn't take more than one occasion of forgetting to pinch the Gtube to remember it's a messy mistake. Then it was bedtime. We were amazed at how well Mason slept all through the night, never cried once! But he grunted quite a bit in his sleep, obviously gassy from the inability to burp. We tried venting his tube and that didn't help, but other than not sleeping much from that, the night went well - we thought. Then the next morning we realized that although the feeding pump said it had delivered all 350 mLs of formula (which it was supposed to do), there was at least 85 of that 350 STILL in the pump. So what did we do wrong?? Did we miscount and put too much in the overnight bottles? Or did the pump misread and just not give him all he was supposed to have?? We had no idea whether to try to give him the extra in case he was 3 oz behind or if it would be worse to overfeed or underfeed him?? The home health nurse who came the next day told us to let it slide for the day...if it happened again we would need to see about a pump replacement.

Wednesday: well the formula amount left over was correct this time. And we vented him using his "chimney" syringe all night, so he slept a lot more soundly, less gas. But to our horror when we woke up the next morning, the chimney had come untaped from his gtube, despite 20 minutes worth of "safeproofing" it, and it spilled formula and stomach contents all over the bed. Uggg... what next??

Thursday: We decided not to vent the Gtube tonight since we decided it wasn't worth crying over spilled milk all over again. We ordered some Farrell Valves which some other moms said were "magic wonders" to vent reliably...they cost a ridiculous amount for a month supply and none of our docs have heard of them to let us know if insurance will cover them, so if these work we'll just buy a few and reuse them I guess. Surprise of tonight? At midnight the food pump alarm goes off with an error message. Funny thing to find out in the middle of the night is, there's no manual. If we have a question we are to call the help line and wake someone up to help us at that hour. Um. Really? We opted to dig up the info online from the user manual. Just as we were getting that sorted out, the apnea monitor went off. At 85 decibals. I hope no one else in the neighborhood was trying to sleep. Thankfully, Mason hadn't had apnea. It was just another error message we had to figure out. "Lead loose." Ahh.  Of course.

Friday and Saturday same story...lots of gas, not much sleep.

Sunday we went to church and Mason had his first seizure since coming home, during the middle of the worship service. He'd gone about a week since the last one, in the hospital. We tried to do what the docs had told us - give him oxygen if he turns blue (he did but the oxygen tank got set up wrong so pretty much a big ugly FAIL there and thankfully it was less than 2 minutes or so and he came out ok on his own), call neurology and tell them so they can adjust his seizure med dose (we did, and now he is on MORE than the max allowed dose of Keppra for babies). Any more seizures means another trip to the neurologist and a new med added or total change of approach, meaning another wean. This I DREAD. Sunday night due to the increased Keppra Mason was fitful and insomnia boy all night, and groaned from feeling sick all over. His big brother woke up screaming after going to bed with an ear ache.

Monday we woke up and Micah had a full-blown cold, along with his ear ache. Mason was sick to his stomach from the Keppra increase, and kept trying to vomit but of course could not. We already had an appointment for Mason, to his first follow-up doc visit to meet his pediatrician. He told us Mason's ear had fluid in it too. Sigh. Looks like a week of sickness on horizon. I guess we'll be back to the ped. tomorrow to talk about Micah. Oh, how I love cold weather. :(

Really, I have no idea what tomorrow holds or how we will get through these long days and never ending doctor visits that don't seem to yield much helpful information, but I imagine it will involve a lot of surprises too. I just hope there are more of the happy ones -- like Mason smiling when I put him down on his tummy for the first time since surgery today, or playing with his musical toys all by himself in the video below :) I will just have to remember a poem my grandma sent me a long time ago by Octavius Winslow ...if ever I needed to "lean hard," it's now...

"Child of My Love! Lean hard! Let Me feel the
pressure of your care. I know your burden, child!
...For even as I laid it on, I said I shall be near, and
while she leans on Me, this burden shall be Mine,
not hers. So shall I keep My child within the circling
arms of My own love. Here lay it down! Do not
fear to impose it on a shoulder which upholds the
government of worlds! Yet closer come! You are
not near enough! ... You love Me! I know it.

Doubt not, then. But, loving me, lean hard!"

THERE'S NO PLACE LIKE HOME!! :D

Did somebody say I can go home soon? For REAL??

All dressed up for his big debut outside NICU room 1848, after living here basically his whole life...just shy of 12 weeks. HOORAY FOR HOME TIME!!!

Ready to ROLL!!

I love my big brother, my basket, and my OWN bed :)

Playtime isn't bad either! :)

It's been one amazing week...details will come in the next blog :) Thanks for all your prayers to get us this far!! God is so good :D

Getting closer to going home! :D

Look Mom, no more tape on my cheeks! Bye, bye, NG tube!! :D

So....the doctors are starting to use the "H" word, along with actual target days now! The plan is, if Mason continues to improve, they are shooting for Tues or Wed. to go HOME!! :D The level of excitement around our house is climbing...we just want it to be for real!!

His follow-up apptmts are mostly all set up, except for his pediatrician and genetics (that doctor doesn't want to see him for 6 mths so it'll be a while until we have a "next step" there).

Neurology said they don't want us to have emergency seizure meds at home but they DO want us to have oxygen to be delivered by cannula if he is blue (no matter how long he is blue). They are not sending us home w a pulse ox monitor, but with a heart and resp monitor to be worn at night because "the fact that his heart drops with seizures is worrisome." and the pulse ox is not very reliable - as we know it doesn't pick up well sometimes and the doc thinks it will keep us up all night with false alarms. (well, if you ask me, if a heart monitor is gonna alarm off every time he bradies....which is when his heart rate drops, which happens A LOT when he is sleeping and doesn't have anything to do with a seizure most times, well sheesh. No sleep that way either. Anyway we'll have to figure that out. I guess we can buy our own pulse ox if we need one and use that if it's more helpful (they aren't too expensive).

The doc is bumping up his feeds again today, not by amount, but going to 110 mls in only 30 minutes (instead of an hour) "because life will be a lot easier for all of us that way" ... according to the doc. I told him that might be too fast since Mason had trouble before surgery with only 90 ml in an hour, and now his stomach is half that size due to surgery...but he said "the stomach is highly stretchable, he should be fine if given a little time. consider Thanksgiving." Anyway...so PRAY for him please because all of them agreed he should move to 30 minutes. They said if he is having issues they will leave it at an hour but they want to at least try. Because if he can't do it in 30 minutes then there's no point in bottle feeding because that will happen over an even shorter period. If it goes well, he can start trying to eat from a bottle again tomorrow. We'll see if his throat has healed enough from the reflux and surgery to go for it. If not I may wait until after he gets his Mickey button (7 weeks from now) to try again, just so he doesn't associate eating with pain. Here will be the schedule at home if he can do it:

On a "chimney feed" to vent (burp) his food through the G-tube. Starting today he is off the chimney and can just vent for a few minutes in the middle of a feed if he needs it, just like a regular burp time.

9 am-9:30 eat

12 pm eat

3 pm eat

6 pm eat

9 pm start continuous feeds through 6 am

They are going to teach me how to draw up his meds before we go. Today the nurse is trying to get his hearing screen set up for this evening. He has to have a car seat test before home which the dr said he imagines he will pass "with flying colors". Also, they are setting up a cardio consult for after home and repeat echo because there was another finding on all his heart tests we haven't heard yet - some kind of "prominent ventricular muscle bundle" to follow, but the doc told his team "well it hasn't caused heart failure yet so I think it's probably not too significant." They just said it was a consistent finding with each of the tests and his PDA is still there a tiny but so we'll see. The opthamology resident is coming by to check his eye pressures to see if he can stay off the glaucoma meds or if he has to go back on.

That's the update for now, he's sleeping well and has had physical therapy this morning, much to his disdain.

 

 Thought for today:

"We stopped relying on ourselves and learned to rely only on God, who raises the dead. And he did rescue us from mortal danger, and he will rescue us again. We have placed our confidence in him, and he will continue to rescue us.  And you are helping us by praying for us. Then many people will give thanks because God has graciously answered so many prayers..."

2 Cor. 1:9-11 NLT