As I type today the little man is hanging on my legs like a monkey and pressing any button he can reach on the computer at any given time. So, you ask, why so long between posts: DEMETRI! Demetri, is the "why" to just about everything in our lives and has been since his birth but that is not to say that my husband, Isabel and Jared aren't any less of the "why". Life gets ya and swings ya around, its your job to enjoy the breeze! My goal with this post is to 1. update on the past year and a half and 2. help myself and anyone else realize that though our CDH or special child an acutely dominant force in our lives, we must find balance and be happy. Cause as my amazing great aunt Marg always said, "you're here right... then it's not that bad" In fact, if you are here, I will stretch to say you are one lucky motha.
On this eve of the International Day of Congenital Diaphragmatic Hernia Awareness, I am reminded to stop and think about the hell CDH causes for so many. I figured, despite the wild toddler currently on steroids due to a cold, and hopping around me, yelling and dancing, I need find the time to share as much as I can. (...thank you again CDH for the absolute nightmare that we must suffer through every time our son gets a simple common cold)
Where we left off, I was reminding myself and all of you of the importance of being your child's advocate (duh.) but also knowing that fine line between your instinct and the doctors expertise. That great pediatrician I spoke of in the last post, is still amazing and thanks to CDH, I speak to him quite often. Just yesterday over the phone he told me, "Nicole, there is some art to medicine (that is where you come in) as well as some science. No doctor will ever know Demetri like you do". Wise words to remember.
Now continuing on from the last post: Following the nissen (to stop reflux, etc. from coming back up into lungs), that was completed in Spring 2011, we managed to stay out of Hokpins until June 2012 for a wild virus that even had me laid up (in hospital room, of course) for about 7 days. In between hospital stays, (that Spring '11- June '12 span) Demetri celebrated his first birthday!!! To have a big bash or not to have a big bash, that is the question. Well, here is your answer, in case you are asking this question yourself.... NOT THE BIG BASH! We of course, opted for the Big Bash. Over fifty invites including Demetri's favorite singer, surgeons, nurses, doctors, family, therapists and friends. Giant beautiful and supper cool four tier Yo Gabba cake, moon bounce, giant water slides, tents and food galore. It was a blast but looking back, I must have been suffering from temporary insanity!
Demetri received tons of presents including....wait for it.... Hand, Foot and Mouth Disease! Funny thing is, as gross as that sounds and is to me, it was a relief to know that my child had finally contracted something that wasn't going to affect his life or specifically his lungs. Hey, it was the first sick visit to the doctors that we were able to happily (rash covered) walk out of.
Within a few months following Demetri's birthday, Cardiology performed their 6 month echo and found that the PPHN had improve enough for them to no longer require his need for continuous oxygen!!! Now we just needed a release from the pulmonary team. Ha, I remember a time that no one was controlling me or my children but me....Boy, have I been humbled. In September 2011, the pulmonary team agreed to let us try to take Demetri off of the 1/8 of a liter of oxygen that he had been weaned down to just prior to his coming home almost two years prior. It went perfectly! Well, besides the blister or skin breakdown that mommy caused from keeping the pulse ox on soooo much. Whoops, and thank God for therapists and nurses who have helped me get through without majorly injuring the little guy. Upon notice of the pre-skin breakdown, doctors and I agreed that I could let go a little and back off the pulse ox machine, because whether I was able to accept reality or not, our boy was finally off oxygen and sating in the high 90's! [Now quick, take a look back at the images of Demetri and ventilator and many many other machines in the first few posts.] One machine to go now. Feeding pump...
Now, I find myself saying things like, "thought surgeries were tough until...", "thought withdrawing was tough until..." Well, let's make it official, "I thought all of it tough, hell actually, until feeding became our focus!" Logically I understand that it is all difficult and traumatic. Plain and simple this whole thing has been traumatic for all of us, though we fully appreciate what we have, thus far the outcomes could not be improved upon and we are truly blessed but I would be a flat out liar if I didn't say it has been horrible at times. Correction, it IS horrible at times.
I read a research article once on CDH and long term effects of ECHMO (Demetri did not get). The article went on to discuss how parents were "seriously" bothered by things such as scoliosis (sometimes a side effect of CDH) as the patient became older and other major issues were no longer a concern. I remember nothing else about that article. How human of us to go from crying about our (in most CDH cases) our baby lying on their death bed, to whining about the amount of time it takes them to learn to eat or the even, and yes I know scoliosis is serious, but complaining about the curvature in the spine. STOP: Demetri is alive! This is something I have to remind myself because I am human (surprise to many. lol) and I whine a lot!
It is so easy to loose touch, not forget, but loose touch with what you have been through and naturally want your child to be the happiest, healthiest and strongest. Then you remember: he is. That is, in comparison to what he has been through. That is the only gauge. Other kids should never be the gauge CDH or not. As I type, I remember crying because Demetri didn't walk like others his age, he didn't eat like others his age and you know what, I realized that he didn't do much of anything like other kids. He is special. Just like every child, special in their own right.
Okay, back to getting rid of that last machine, the feeding pump. Once, the O2 was gone, I stopped using the feeding pump. Period. I started to just use gravity bolus (amount ordered by docs) four times a day. I still use the feeding pump here and there like when Demetri is sick but when we found out that he would no longer be connected to O2, we decided that just maybe if we also disconnected him from the feeding pump, he may actually at the ripe age of 15 months begin to walk or at least crawl. We were right! It happens.... Demetri was crawling within a week of being off the O2 and feeding pump and then around 18 months, he began to walk!!!
Off the pump is one thing, actually eating and feeding is a whoooole different thing. Oh boy, eating. Never in all my years thought such an enjoyable experience, something so treasured around the world since the beginning of time, could be such a nightmare for Demetri. This is the part of the post that I could get most carried away with but is only important to a few of us so I will briefly bullet and if you, yeah you, ever have any specific questions, please comment or email me directly. This is what worked for me, looking back...
|Dad & I on Capital Hill|
-a taste, a literal drip on the whoobi (pacifier) is a great start
-if the little one is eating 1/8 of a teaspoon of puree for a year, remember, they are eating!
-remember what you have been through
-eat together and always give the little one a chance to play with food WITH HANDS and utensils
-get those hands dirty with yogurt, playdough, etc. that connection is more important than you can imagine
-honey bear, nuk brush, z vibe, chew tube...search these
-it will happen, on their time NOT yours or anyone elses
-keep it light and fun with structure
-and one of my personal favs...use what ya got to get what ya want....really, I can't get Demetri to swallow anything but goldfish, so I give him a bite of pizza and then follow with a goldfish. Its the only way he will swallow that pizza, so I use it to get what I want.
I could go on forever especially since I am still fighting this battle with Demetri. And please remember officially that I am in no way a "professional" simply a mom stating what works for us.
So, long story short, eating is still a major battle we are fighting daily but we are having fun doing it. I am so lucky to be able to stay home with Demetri and work effortlessly on preparing him for his next milestones. HIS next milestones are eating, potty training and potentially getting the opportunity to learn social skills with other toddlers, not doctors and nurses who he is most comfortable with but other toddlers.
|1st Trip to Hooter's!|
It has been an amazing couple of years. We play, laugh and try really hard to expose him to all the joys that life has to offer (minus, anything that has a high germ risk). He is still the little fighter that he was at birth. He has made our family stronger all the while testing our every nerve. He is all boy and is therefore sporting a goose egg on his forehead at least 75% of the time. Just yesterday as he yelled "I a flyer" he flipped off the back of our couch. On the other hand, Demetri is still fighting CDH related battles. Just this week, he was sat'ing in the mid 80's and had to go back on oxygen for about 24 hours until his steroids kicked in. Minor cold. Huh! And though I never seem to overcome the "oh my God, he has a cold!" freakout, we did avoid the hospital as we have now (knock on wood) for the last three colds.
|We use a lot of frozen peas.|
So, I hope I have in some way I redeemed myself for the year between posts and I hope that someone somewhere is getting something out of this.