You gotta hold your head up high and
Watch all the negative go by
Don't ever be ashamed to cry
You go ahead
Cause life's like a jump rope
I want to tell you that everything will be okay
That everything will eventually turn itself to gold
So keep pushing through it all
Don't follow, lead the way
Don't lose yourself or your hope
Cause life's like a jump rope
Up down yeah
It will get hard
Remember life's like a jump rope
~ Excerpts from
We have been so very busy lately - doctors appointments, sicknesses, wintery weather, gearing up for surgeries for the babies - that it's been difficult to find a spare minute to share progress notes!
Let me start with one that I am proud of.
A couple of weeks ago, the owner of The Dallas Mom's Blog contacted me and asked me if I would be interested in writing an article for the blog. Of course I accepted. What an honor!! January is (was) National Birth Defects Prevention month, and as a mom of babies with birth defects, I thought I might have something to add - support to give, inspiration, advice, just something to give to other moms. It took me several days to choose a topic, and with some guidance from Krystal (the owner of the blog), I chose "10 Bits of Wisdom From a Mom of Conjoined Twins." It is specifically written for other families who find out they are pregnant with conjoined twins. Now, you may be thinking the population of families who will benefit from this is minuscule, you may be correct, but I say to you that there are more families who find themselves in this situation than any of us are aware of. Statistics dictate 1/50,000 to 1/200,000 and to me, there is a disparate difference between one figure and the other. At any rate, I have had a few individuals contact me for advice, information, anything that I could give them to help them through the emotions of this type of situation. Unfortunately, there isn't a guidebook. Dave and I were desperate for ANYTHING. It would have been helpful to have found something written by a family in a very similar circumstance to help guide us through. So even if this article only helps one single family, it would have been worth it for me. And it would mean a lot to me if you would give it a read.
Second, Dave and I wrote a song together, and I certainly have to give him a portion of this blog because it is something that he is very proud of. I only helped a little with the lyrics and overall shape of the language, he wrote the music and the majority of the song. It is so sweet. It's entitled "Slumber Song."
We posted it HERE on youtube.
In the meantime, before the weather became sporadically wintery, we took Ethan and Liam on a trip to the zoo, thanks to Laurie Holloway!! (Laurie reached out to us shortly after the twins were separated. She is so incredibly kind and generous!) Laurie tipped us off to be sure to visit the monkeys as there had been a new addition to the monkey family.
And now for news on the babies.
Emmett has been recovering from his j-tube placement surgery like a champ. They began trial feedings via his new tube, but had to stop them 1.5 days later to get him prepped for another trip to the OR. His surgery today was to address the IV infiltrate that occurred prior to his j-tube placement surgery. The doctor took him down for a debridment procedure, which basically means that all the dead skin needed to be removed to allow granulation (development of healthy blood supply) of the exposed area. The doctor placed a wound vac over the area to promote healing, and a skin graft procedure has been tentatively set for Thursday (2/20/14). He was looking good after his surgery and just beginning to stir when I left today.
Now, as for Owen, he had surgery this past Tuesday for a few different issues. The plan was 1.) J-tube placement 2.) double fistula repair (both at the skin level and intestinal level). But, as with all things with these boys, it wasn't as easy as that. Our surgeon decided to remove the reconstructed portion of the small bowel because it wasn't getting good blood supply, and it was causing more problems than what was desired. They also placed a g-tube in his stomach to act as a drain (rather than placing a replogle in his nose/mouth or vomiting), and the gallbladder drain that has been in place since separation surgery on August 24th was relocated to make room for the j-tube and g-tube. The longterm hope is to eventually remove the j-tube (which bypasses the stomach and delivers nutrition into the upper intestine), leaving only the g-tube into the stomach for feeds. Needless to say, his pain is being managed and he is as comfortable as he can be, given the situation.
All in all, things are progressing. And we are blessed.
3 good things:
1.) brainstorming sessions with Dave. New ideas are where dreams begin.
2.) being able to be "just a mom."
3.) strong, resilient boys - all 4 of them.