Weight gain is our mission these days. We are plumping up our youngest daughter, Miss Lottie, with all we got- which is Neosure and cuddles. It’s a mission impossible, but each day we are winning more growth before her surgery. Along with this challenge, we are striving to not lose our minds.

Charlotte has an Atrioventricular Septal defect. Essentially, the center of her heart failed to develope. We now know she also has a patent foramen ovale (PFO). Breathing is like running a marathon for our poor Lottie. Her feedings hit her like a round of P90x. She often falls asleep from the exertion, hence the NG tube. To make up for the extra energy her body burns, we mix high calorie fortification with her breastmilk. For now, that works. She is gaining weight; reference her double chin.

Unfortunately, her current functionality is temporary. As her body concludes its transition from newborn to infancy, it will begin to show more symptoms. She will soon outgrow this grace period and force our hand. Surgery is inevitable, it’s just a matter of when. Basically, as soon as her weight plateaus we are up to bat for open heart surgery. Until then, we do weekly/biweekly weight checks. During these frequent trips to Salem, our pediatric cardiologist and pediatrician are closely watching for the moment when her body reveals it can no longer keep up.

Our three weeks out of the NICU encompassed six doctor visits, and we are just getting started. Four kids, ages four and under, exaggerate the complexities that come with said appointments weaving in and out of our day. What was assumed to be temporary, is seemingly our new reality. Therefore, I am preparing to face this challenge, and make the medical side of Down syndrome work for our family unit.

Doctor appointments, physical therapies and early interventions simply aren’t going away. I can try powering through with an attitude of annoyance, or develope a alternate system. I need to master making it to and through appointments, with all the littles. My five step game plan is: Plan, Prep, Execute, Assess, and Reward. By ‘reward’ I mean coffee, for me, all day long. This will be a process of constructing a successful routine overtime. Speaking of time...

Week one taught me this much; it’s all in the timing. For us, each appointment is and will be scheduled at 1:15. This allows for breakfast, school, lunch, and naps. Parents know breakdowns often result from hunger or sleepiness, (mom included), so this timeline greatly increases our chances of victory. It also gets us back home with a window for outdoor play and such before making dinner. Bottom line, it works for us.

Getting out the door is the next greatest challenge. I have prepared the car for battle. We now keep strategically loaded backpacks and a fully supplied diaper bag in our vehicle 24/7. That is three bags less to carry in and out come go time. These backpacks hold snacks, and a Leapfrog book. 

Perfect practice makes perfect right? There is no use in demanding of my children what they are incapable to do. I must pair communitcating my expectations with instruction and opportunities to improve. For example, this week we will practice sitting down quietly for a short time. Increasing by small increments, the boys can build an endurance. My secret weapon will be the exclusive access to their Leapfrog books when at appointments. Hopefully that will bring a little excitement to the ordeal.

A recent discovery gave me some excitement this flu season. Here is a tip for those of you in a similar situation with newborns: use the back door entrance. Avoid the waiting room and each cold, rash, and nasty flu bug that sifts through it. A simple call in advance to arrange it and goodbye germ exposure.

Whichever door I use, I must enter prepared. In the chaos, it’s easy to forget thoughts and concerns. I am journaling questions prior to appointments and noting what we covered for future reference. This helps in making the best desicions for our girls.

One decision I recently made, was to reference different growth charts through the CDC. For all my fellow Trisomy 21 parents out there, make sure the charts and growth rates your pediatrician uses are appropriately geared towards your child. It doesn’t do much good to stare at a growth curve that doesn’t accurately apply to Down syndrome. After inquiring, I learned that to switch is literally, a click of a button on the computer. I will advertise this, since no one else seems to.

Medical professionals don’t always disclose the information you may feel is important concerning your child. Often, they are selective in the information they verbalize. Four kids leaves zero time to read between the lines, so choosing my team wisely is a must. The better the relationship, communication and support, the less stress and greater progress for us all.

I don’t want my family to suffer at the hand of the medical involvement that my girls require. We will try our best to keep Charlottes weight increasing, while keeping my sanity as well. In the words of a random Pinterest pin, ‘The only disability in life is a bad attitude.’ Cheers to positivity, preparedness and incessant prayer!