104.1

Well. It has been a very eventful week, some very good, some very bad. And we are ending it with a whole bunch of bad. Today we went to "school" and Cameron was fine but Evan was in a very grumpy tired mood which I attributed to the copious amounts of drool indicating he was teething. He had a lousy time at breakfast, we gave him tylenol and he did better through lunch, napped for almost 3 hours, did pretty well at snack. The playroom staff told me that 4 of the 10 kids in the program were out sick today so there is definitely something going on. Just as I was putting him in the car for our long drive home I noticed he felt really hot. In the car he was lethargic and moaning the whole ride home until he fell asleep 5min before we pulled into the driveway. He woke up out of the car and we checked his temperature.

At 5:30pm I checked his temperature several times over 10min. It went from 100.1 to 101, to 102.3, to 103, and then 104. I gave the tylenol at 5:40pm and while he was very slow and definitely obviously not feeling well he was playing and talking and he even ate 25grams of puree zucchini. He refused milk but did drink a tiny sip of water. After dinner he had a temp of 100.1 again. And he was in good enough mood to sit with us and read two books before flopping down in my lap like a rag doll. He went to sleep immediately at 7pm and I just checked his temp again at 8pm and it's 101.7.

I'll wait till 9:30pm to give him ibuprofen. Hopefully this will subside and we won't be making a trip to the ER or urgent care.

I have lots to update from this week's progress, which really has been fantastic. But it will have to wait for now, I'll try to do an update maybe tomorrow.

If there is a Heaven....

I am not religious. But.... If there is a Heaven then the pearly gates are particularly busy this week.

A week ago good friends of ours had their second baby, a boy named Finn. He's a beautiful full term healthy baby boy. ( I love that I get to type the words "full term" about people I know and care for.) Welcome to the world Baby Finn, your big sister Zoe has a lot to teach you. We are all so excited to meet you.

Two days ago my Preemie Parent friends Martha and Robbie had their second baby, sweet little Maggie, baby sister to Campbell who was a fellow 28weeker like my boys. All our Preemie Mom friends have been living every moment of this pregnancy vicariously through Martha, all of us waiting on pins and needles, with baited breath. Patiently we've been enjoying hearing of a woman truly reveling in her FULL TERM pregnancy with only a handful of scares from a possible reoccurrences of pre-eclampsia, which thankfully did not cause any complications. Welcome to the world Baby Maggie. We're so excited to meet you this summer!

But tragically the pearly gates swing both ways, and today my friend Tiffany lost her baby boy Justice at 20 months old. My heart beats with heavy sobs for Tiffany and her family. As of yesterday JW seemed to have been doing better with his breathing so today's news that he has passed on is devastating.

Please go hug and kiss your children one more time today. Life is so precious.

A New Old Trick

Monday and Tuesday have been better, but we're still struggling at night with vomit and teething. And then there's the one hour one way commute that has been a bear in the rain that we're having this week. The boys however are really doing well. Cameron has REALLY grasped the requirement that he must accept and swallow the food offered on the spoon before he can have his toys back to play. Evan is much more stubborn but also is grasping the concept well so that he's now opening his mouth willingly three out of ten times. But it's still very slow going and requires at least two people to feed one kid with this protocol. We would like to see the boys increase the volume consumed per spoon (they take about a half a spoon each bite) and the number of bites they take to where they are consuming at least 80% of one smooth food item before we move on to more difficult textures.

One amazing new trick that I did not know the boys would do is take medicine by mouth. They have not been able to tolerate this since before they got their feeding tubes. Today the nurse told me that she decided to try it and see what would happen if she used the feeding protocol to administer .3mls of Erythromiacn and that it's worked every day for a week. I was stunned that it's working. In my mind the last test of getting off the feeding tubes would not just be that the boys could show they were getting enough nutrition by mouth for up to two or three months before removal of the tubes, but that they would also have to tolerate taking all their medicines by mouth as well. Erythromiacn is a very smooth medication that is bubblegum flavored so that's part of the reason that the boys are able to take it. If it were Prevacid they would have more of an issue with it because it's a difficult medication to administer since it's a soluble tablet which is something the boys can't tolerate, and if we were to dissolve it the granules would be too much texture for them and they would gag and likely vomit because of the gag reflex. We used to give Prevacid by mouth when they were very tiny so I'm very well versed in all the ways you could possibly administer this medication and I'm pretty certain that we are a ways off from giving that by mouth. But it's very promising that they are willing to take the Erythromiacn by mouth.

Still Wonky

Sunday the boys woke up at 5:30am and were in pretty good moods, if not a bit whiny. They flat our refused to eat pretty much anything other than to drink some milk, though nothing outstanding. It was pretty much a huge frustrating battle all weekend long,and even though I did have some great meals for each kid, they really made me work to get it in them. At least the only vomit today was from Evan gagging after I put a sneak attack spoon full of butterscotch pudding in his mouth. Last night was rough, for some reason Evan pooped and woke up from it at 9:30pm which made the poor kid restless until he finally fall asleep at 11:30pm. Also, this morning they crashed at 9am, Evan for two hours and Cameron for only one hour. They went to bed tonight at 7pm and hopefully they will sleep like angels and wake up when we are on the road and halfway to school tomorrow morning.

Cross Your Fingers!

Today the boys woke up cranky again at 5:30am. They were very combative when I tried to feed them breakfast, though they drank about 1oz of milk each. Cameron did throw up more clear stomach fluids, neither had a fever, runny noses have somewhat subsided, the guys looked like they felt miserable, and both boys went down for two hour naps at 8:30am. They woke up and Drew tried to give them lunch which was a miserable experience. Then Cameron went back down for another nap at 1:15pm and slept until 4:10pm, while Evan was a fireball keeping Drew on his toes all day. Drew tried several times to get Evan to take another nap, but Evan did not think that was such a hot idea. When Cameron got up he told me very clearly that he was hungry and wanted milk (pronounced "Mick"). I gave him 4oz of milk and he drank it all in under 30min while watching The Backyardigans. Then he told me he was hungry and I tried to feed the boys dinner around 5:30pm. He drank another 3oz of milk, ate about 20grams of Chicken & Stars soup (this may not seem like a lot but it was baby spoons loaded with actual noodles, carrots and celery and not just the broth by itself which is usually all he wants), and 4 veggie sticks. Evan drank about 16 baby spoons full of the Chicken & Stars broth which is more than he's ever had in his life, but fell asleep mid-sip of broth on the 16th one. He drank lots of milk today too, about 5oz which is a lot for him. Since Evan went to bed at 6pm we kept Cameron in his highchair playing with a toy while we adults ate dinner. He demanded more milk and drank another ounce plus ate three cheese puffs.

There's something to be said for a stomach virus and a 5 hour nap. It makes a toddler eat more than he's ever had in one day. Now he's finally asleep by 7:45pm and has been on his feeding pump at a very slow rate since 6pm. Please cross your fingers that he doesn't upchuck everything tonight.

Update to Day 13

During lunch Evan told me "Head boo boo" and was whiny and rubbing the sides of his head and generally very obviously feeling miserable. Cameron kept asking for Night Night so I put them to bed after giving them both some Tylenol. Cam slept for another three hours (in addition to the 40min the boys both slept on the car ride home), while Evan became hyper and pooped and became even more hyper. Once I finally got Evan down for a nap at 1:30pm Cameron woke up at 2pm. When Evan woke up he had big red splotches all over his face and lots of little red pin-prick dots on his back and belly and behind his ears. Neither boy had a fever or was acting very differently from normal. We gave them a bath and noticed Cam had a few red splotches showing up on the side of his face too. That's when we decided to give them some Benadryl before bed. Within 10min we noticed the red splotches fading. We've gone over and over and over the day's activities and what they might have consumed (nothing measurable for sure) and can't figure out what could have caused the reaction. Guess it's just as well that we came home today.



We're having a really bad thunderstorm tonight. Our two beasties are scary if you don't know them, but have a thunderstomr come rolling in and this is where one of my large hairy chickens likes to perch for her safety...

Day 14 - Oh no!

Last night both boys vomited in their sleep at the same time with no warning for us. This is not uncommon so we didn't think much of it. Then this morning Cameron was grumpy when he's usually a chipper morning person. He screamed a couple of times like he was gassy, and then he puked a handful of stomach fluids with big green loogies (sorry for the TMI). I checked his temp and he was fine no fever. I checked Evan just because he was right there and he had a teeny tiny fever of 99.4. But they seemed to be doing fine so we loaded up in the car and left for "school". During the ride Evan was a chatty thing that could not sit still, very unusual for him because like me he's not a morning person. And Cameron, who is usually loudly pointing out every.single. truck/school bus/train/plane, was trying to fall asleep but struggling to do so because Evan was keeping him awake. Not five minutes away from the feeding clinic parking lot and suddenly with no warning Cameron puked lots of clear stomach bile (not the really nasty green stuff we used to get, but it did smell like it). Once we got into the building the nurse took their temperatures again and we agreed with the Director of the program Dr. Katz that it didn't appear that he was ill, just really having a rough day and didn't want to be there. So we decided to see how breakfast went and then if it didn't go well I would take them home to rest for the weekend. Cameron barely got out of his stroller and even laid down on the hallway floor in protest of being at school, which he never does. We then changed the plan so that Evan would get fed breakfast and I would take Cameron to the cafeteria to wait out the traffic before heading back home. The whole time in the cafeteria poor Cameron just wanted to snuggle in my lap.

We picked Evan up after his very unsuccessful breakfast and headed home. The boys fell asleep for about 40 min until we got home around 10:15am and I let them lay on the floor and watch tv for about 20min and then got things ready to attempt a lunch since they haven't eaten since midnight last night. I got as far as setting up the highchairs when Cam threw up again and asked to go night night. Evan had become more and more fussy and started telling me "Boo boo head, boo boo head" and rubbing his eyes and sides of his head. So I doped them both up on some generic Tylenol and Cam went to sleep at 11:30am and Evan pooped, so now he's refusing to nap but is happily playing in the playroom and watching Dora while his brother gets his nap.

Hopefully this stomach bug Cam has is over quickly and Evan doesn't catch it. And that we can get back to the feeding clinic to pick up where we left off. I was so looking forward to getting the boys to school today to reinforce the great day they had yesterday. I guess it was not to be...