Has it really been a month since I’ve updated this blog? Where did the time go? So MUCH happened in May and June but first I must recognize the most important thing about today: HAPPY BIRTHDAY TYLER AND PARKER!
It was two years ago today that my little angels were whisked into this world, earlier than they should have. I remember how scared we were and what “lack of control” really meant. I was grateful for my family and unsure about our future. The physical pain was piercing but temporary, the emotional pain was indescribable. The day will forever be seared into my brain. The following 4 ½ months in the NICU will always be remembered as a foggy journey through machines, wires, tubes, tests, alarms, hand sanitizer, the pumping station, and life and death moments. Some memories are filled with joy, hope, and laughter, while other moments brought shear terror and heart-stopping panic that you want to forget, but just can’t. The saving grace is that these memories are slowly being pushed aside with new, relevant and more important topics like the boy’s obsession - Yo Gabba Gabba, their new manipulation tactics, or their love of bath time.
So where are we NOW, two years later? We’ve come a long way baby!
Our 1lb, 10oz, and 12.75” long first born (by less than one minute mind you) Tyler Johnathon is now 26lbs, 12oz and 33.5” tall. He has been running around like a track star for quit a while now and climbs better than most monkeys. He climbed into his highchair the other day and can climb out of his crib but doesn’t because he’s actually obeying our request, which is odd. Tyler’s speech has improved tremendously in the past couple of months and he is expressing a number of words and sounds. His imitation skills are amazing and when he pays attention (that’s key, he also has the ability to get distracted) he is able to repeat what you say to him. Tyler has been spending more time sitting and reading books lately – in fact at bedtime, Tyler sits on my lap to read books with me. He used to run around and explore during book time, or just didn’t stay still long enough to finish a story. It’s been nice sharing stories with him. For his birthday he received a key board from our So CA family that plays cat music – yes, it’s shaped like a cat, sings cat songs, the keys even sing “meow meow” if you like. It’s enough to drive a mom CRAZY (btw: Thanks Brian, Christine, Lindsey & Alyssa)! Well, Tyler loves this thing and it is able to capture and keep his attention for half an hour at a time! A few months ago I’m not sure he could’ve found an activity to do that – so whether it’s a maturity “thing” or toy “thing”, it’s a great “thing”!
Our 1lb, 6oz, and 13” long Parker Duran is now 27lbs, 2oz and 33” tall. Parker’s physical abilities have grown in leaps and bounds. A few months ago we purchased a play structure for the backyard that includes a couple of small slides. As the boys began climbing all over the furniture this winter, I knew we needed to find something outside that allowed the boys to use their amazing climbing abilities (oh yeah, and keep mommy’s sanity intact). The structure has really enhanced Parker’s strength, fear of heights and lack of control. He is able to climb up and down the structure with ease and slide down without fear. It’s done wonders for him! Speech continues to be a challenge for Parker but his verbal initiative has increased immensely. In fact yesterday John slid Parker down a slide that led into a new water toy the boys got from our Bay Area family (btw: Thanks Mikey and Velear) and Parker was so mad at John that after he got out, he stood outside of the toy, pointed his finger at John at just yelled gibberish at him for a while. He was clearly giving John a piece of his mind. The interesting change in Parker is that he’s become very independent and exploratory. While he continues to read books and “tinker” with the mechanics of objects, he’s currently not engaged in sitting down with mommy and reading stories on her lap like he used to be. Instead he will listen from a distance or pick one book, read a story with me and then continue on his way. Our multiple book marathons are just not happening any more. Change is in the air!
EATING & GI
Eating is such a HUGE topic in our lives that it really needs its own title. And because the boys GI issues are cause for said eating “issues”, it too shares this title!
I will begin with Parker this time!
Parker is officially eating and drinking 65-72% of his daily calories! Wooooo hoooo! AND Parker is no longer on overnight gavages! He is getting all of his calories during the day – no pump at night. We saw the GI yesterday and officially discontinued his last two hours of pumping at night. Our GI was thrilled to see the progress Parker has made in less than two months. She says this is certainly an exception. I’d like to say that Parker is eating with ease, but I can’t. In fact most of time we are using bribes to get the heavy calories into him – I’m sure he’s sick of avocados, but a tablespoon is 42 calories. So we play the “one bite of cracker for a bite of avocado” trick, the “pause Yo Gabba Gabba until you take another bite” trick, the “I’ll turn the page if you drink more” trick. Not ideal but we’d spend ALL of our time feeding Parker if we didn’t do something. The therapists tend to think that when his calorie intake is at 100% and he’s completely on track, we’ll be able to pull back on his manipulation and break the habit without too many consequences. Does it make it better knowing that he’s the one manipulating us? Ha ha!
Now Tyler – just get ready by opening hand, slapping forehead with said hand and yelling “doh”! So last time I blogged about Tyler’s GI issues he was having a reflux test. Well, the test results were inconclusive because it was supposed to be taken after a 72 hour break from the patient’s reflux medication. We weren’t told this and Tyler had had his medication 48 hours prior. So…all of that for not. Doh! The endoscopy results came back showing that the ulcers were gone but swelling had continued in the duodenum area. The GI put Tyler on a 5-day regimen of Prednisone, a steroid. This stuff made Tyler CRAZY, making mommy crazy with him! It clearly worked its magic and Tyler’s throw ups cleared up, but a week or so after discontinuing the drug his symptoms came back. We’ve since put Tyler on another steroid called Entocort which doesn’t seem to make much difference to his throwing up. At yesterday’s appointment the doctor suggested a stomach x-ray and possibly changing Tyler’s reflux medication. The only other option should these things not help, a G-J tube – a stomach tube that sends food directly to the intestine, completely bypassing the stomach altogether. This would allow us to feed Tyler at a higher rate at night so we wouldn’t have to gavage him during the day, when he’s throwing up (mainly a volume issue – he isn’t able to handle volume). Then we would only focus on oral feeds during the day. We’re just not sure if this is what we want to do though, it’s another risky alternative. So, right now we are waiting for the doctor to get back to us with the results of Tyler’s stomach x-rays from yesterday and give us the green light for this new reflux medication. We’ll go from there…that’s all we can do! Until then, Tyler sits in his highchair and takes licks of purees and other liquidy foods. If he gets an unexpected crumb or chunk…look out, here comes a vomit volcano!
Saturday we had an intimate Yo Gabba Gabba birthday party for the boy’s second birthday with my family. I promised John that this celebration wouldn’t include the 70+ guests that came to their first “Celebration of Life”. But come on, that was a special one – they’d only been off oxygen for six months at that time! My challenge was creating a Yo Gabba Gabba good time – har har! I think the boys were totally confused about what was going on but had a blast! Here are some pictures of the day, enjoy!