Don't you just love this time of year? It's so busy, and wonderful! We have been quite busy with Christmas preparations and activities, and the babies have been enjoying it from what I can tell, as have the 2 older boys. When we decorated the Christmas tree, I thought there was going to be a fist fight over who would put up the NEXT ornament! Luckily, we completed our tree with no additional bruises or emergency trips!
First, let me post some Halloween pictures of some pretty awesome dudes:
Alright. Blog is done!!
Ha! Not really. So on Halloween, we had two construction workers driving some their sweet tractor rides, a football player (Liam), Starlord from Guardians of the Galaxy (Ethan), a 14th century doctor (Dave), Strawberry Shortcake, and a random French woman (my mom). We took the boys to Crosspoint Church of Christ's Trunk or Treat. It was the babies' first 'for fun' trip ever. They seemed a little overwhelmed with the amount of people, but it was really great being able to introduce them to our Crosspoint family. Of course, while we were there, we lost Liam. He had made a beeline or the bump-n-jump. Thankfully, there were people watching out for him until we located him again. Leave it to us to lose one of our kids...
We've been staying busy in this household. All the boys caught a cold just after my last post - Ethan and Owen first, followed closely by Liam and Emmett, then Dave and I both caught it. Luckily, it was a MILD rhinovirus strain and it only caused a short overnight stay for Owen in the hospital. By the time Emmett caught it, we knew what to expect and how to manage it.
After that, I executed the final steps to my phase 1 of minimalist living. Our garage went from this:
To being spacious, though not empty enough for my liking. We had a ginormous garage sale. I was pleased with the final product. This is what we had left:
Isn't that incredible?! we donated 6 boxes to goodwill, and I had a few boxes of the babies' clothes and some of my maternity clothes that I donated to Thrive (an operation looking to help young pregnant women). It's kind of embarrassing just seeing how much STUFF we had! So I have started phase two in my minimalistic journey, and let me tell you, I've got it pretty bad! Everyday I wake up and can hardly wait to dig into the books and crannies of our house to trash and organize everything. I feel like I'm nesting all over again, but I'm not - I'm purging, and it feels great! I bought a few new articles of clothing (4 shirts and a scarf), and donated 6 shirts and a scarf that I rarely wear!! Even after having the garage sale, I have packed up and donated four more boxes of clothing and household goods! Phase two is looking to be a huge success as well! Currently, my goal is to sort, donate, trash, and organize things into like piles/locations (I.e. All pictures in one place, all tools in one place, etc.) once this is complete, phase 3 will commence, and I will return to my "piles" and sort, organize, trash, or donate again until all items in my house have a place, and all items are IN their place. This is going to be great. I'm so giddy about our progress!!
The babies have become VERY mobile. In the picture above, the weather was nice outside, and both babies were headed for some outdoor time. We have taken them for a walk around the neighborhood a few times.
With their newfound mobility and general curiosity, I had to create a box that would allow them to pull their feeding pumps and drain bag around WITH them without yanking out their buttons. This is our system:
I know I have a picture of them USING their mobile-boxes, I just can't find it!! Not to worry, I will post one soon.
In the meantime, the babies are becoming well established at the Dallas Scottish Rite Hospital. There are many specialists that the boys are able to see there, and it is nice having one, central location for the majority of their appointments. Dr. Renard (the lead pediatric suregeon who led the separation surgery) told us at our last appointment that he didn't need to see us again unless there was a problem. I'm really not sure how I feel about this. Greatly saddened. Thrilled that they are doing well enough that they don't need recurrent visits. Unfortunately, I can't hang on to all the people who have meant so much to us over the past couple of years, but I CAN remember them, and hang on to pictures of some of them!
As our early doctors and specialists are beginning to phase out, we have a new set of doctors stepping in to help with the different hurdles that the boys are facing (scoliosis, developmentalists, hand specialists, etc.). We still have PLENTY of appointments to attend each week, so our routine has not changed a lot, we are just seeing new faces.
One last picture, and I'll be done for now.
As you can see, I've got my hands full...all the time, and I love it. Ethan is such a huge help when he gets home from school, he plays with the little ones while I cook. He's such great entertainment for them, and ALL the boys light up when he comes home. Liam is such a cutie that it's hard to not let him get away with ANYTHING. And the babies are, well, into everything. Exploring, opening cabinets and pulling content out, making messes, you know...the usual 16mo old stuff.
3 good things;
1.) Dave allowing me a girls night of painting and fellowship with some pretty amazing ladies
3.) God revealing Himself in such incredible ways.
"We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves."
~ 2 Corinthians 4:7
At 2:45 a.m., Ethan awakened me because he felt like he couldn't breathe. We started the regiment of breathing treatments that had been prescribed for asthma flares. By 6:00 a.m., it was obvious that his breathing was not improving. At 7:30 a.m., Owen was showing signs of respiratory distress. We started intensive breathing treatments with him and waited to see if he was going to improve. At 9:30 a.m., I pulled the plug on managing everything at home. Ethan had an appointment with the dr. at 10:30, and an ambulance was headed to our house to take Owen, with his nurse, to the ER.
Owen and Dave stayed overnight at the hospital. By Tuesday, Owen was on oxygen. Preliminary tests confirmed that he had rhinovirus (which presents as a common cold), and fortunately, a very mild version of it. He was stable enough to come home - we have been managing this round of infection from home. By Wednesday afternoon, Liam and Emmett both came down with the same infection, and while Liam and Ethan are both on the mend, the babies are taking their time to improve; however, they are both in good spirits, and they are both nearly off oxygen. I'm hoping in a few more days, they will be back on track.
This past week, Emmett had an appointment at the Scottish Rite Hospital to assess his scoliosis. With this appointment came both good(ish) news and bad news. Apparently, Emmett's scoliosis looks worse on the x-ray than it does clinically, which is good. It may buy us a little bit of time before some type of intervention has to be done. The bad news is that the early, less invasive options of treatment are NOT options because of his abdominal involvement - we HAVE to have access to his feeding tube ports. We are unsure what this is going to mean in the long run for scoliosis planning and management, but in the meantime, Emmett has to have an MRI (after he kicks the respiratory infection) of his entire spine, and he will have to go under anesthesia.
Owen's scoliosis appointment showed NO INDICATIONS OF SCOLIOSIS, however, Owen is not completely in the clear. At the cardiologist, he still showed a mild-moderate septal defect. Emmett's heart is perfect. We still have many years of medical appointments and check-ups ahead of us. It's part of the parcel. I happily accept the whole package.
If you missed the segment on The Meredith Vieira Show that featured the babies, don't despair! There are a few clips on you tube. You can either search for "The Meredith Vieira Show" channel, and then type in 'conjoined twins' or 'Ezell,' or you can click HERE for the first segment, and HERE for the second segment where the babies make and appearance. We had an altogether great experience meeting Meredith and her VERY hard working crew. They were all such genuine, kind, open-hearted people. They all took us under their wings, and encouraged us, listened to us, played with the two older boys, and they helped us make memories that we will cherish forever. Here are a few pictures from our trip:
Get ready, New York, here we come! Hopefully our arrival will not be heralded by some type of van running into some type of building (moving van into apartment in Plano; van into house in Grand Prairie). We are hoping for a calm, uneventful arrival, followed by some pretty amazing things.
The real deal, though, is that the decals are amazingly resilient, and they look as great now as they did when we received them!
I. Love. Kidecals. We have not had infections spread since we started using them. They are personizeable, and there is a huge variety of options (including keyboard decals, 'peanut allergy' indicators, personalized labels, etc.). There are so many options, it is almost overwhelming. But, if you just want simple, you can just do simple! Check out kidecals.com and let the personalizing and organizing begin. (Did I mention thy are dishwasher and washing machine safe?!)
Kidecals also has offers for those of you who would like to try out their product:
2 children: doubles2014 = 15% off $25 or more
3 children: threes2014 = 20% off $50 or more
4 children: fours2014 = 25% off $75 or more
5 children: fives2014 = 30% off $100 or more
6 children: sixes2014 = 35% off $125 or more
7 children: sevens2014 = 40% off $150 or more
So let me leave you with these two things:
1.) 'The Meredith Vieira Show' on Wednesday on NBC.
And now, 3 good things.
1.) cute boys to take lots of pictures of!
2.) amazing opportunities (Meredith Vieira and kidecals.com)
3.) an amazingly loving God who loves without bounds.
Just after Dave and I married, 5 loooooooooooooooong years ago, we had this fantastic idea: let's get a camper and go camping. We were a family of three and a puppy. A small simple antique camper would do just fine, we decided. And then I found the perfect camper - it was cute, it was compact, it was inexpensive, AND it had a teal stripe down the side. The only problem was that it was listed on craigslist in Colorado. All that REALLY meant was road trip! (Right?!) but then we realized that my elantra wouldn't pull a trailer, and Dave's 2-seater truck couldn't carry our small family. So the ONLY logical next step was to buy a truck that could seat us all AND pull a trailer all at the same time!
First thing is first. I apologize for my uber fail - It has been over a month since I last posted an update!!! In my head, this is what I'm hearing, "Come on, Ezell!! Get it together!!!" But before we get to all the recent goings on, I have a lot of funness to impart.
Two words: BIRTHDAY PARTIES.
Dave and I had a small, intimate birthday party for the babies on July 15th (their actual birthday). We were able to invite a few of the doctors and nurses who we have become very close with over the past year, as well as our family from Arkansas, and our closest friends. There were many people who were not able to make it, and they were certainly missed!
And just look at that AMAZING cake!!! I have to offer a ginormous thank you to Erika Bridges, owner of Confections In Cake. She introduced herself to us through email, and offered to make Emmett and Owen's first birthday party cake, and WOW! It was 1.) absolutely beautiful and 2.) incredibly delicious. It was perfect. I sent her my color scheme, a couple of pictures for my inspiration, and gave her free design. She nailed the look and feel that I was going for, exactly. All this to say, if you have cake needs (birthday parties, weddings, anniversaries, etc...), Erika Bridges gets the highest recommendation from me! Here is her website: www.confectionsincake.com. Sersiouly, take a peek at her website. It is time well spent!
Wow. Oh my goodness. Wow...
Three weeks have gone by since the babies came home. It has been exhausting. And difficult. Confusing. Hectic. And oh, so worth it. I have learned a lot in the past few weeks about a lot of different things. For one, I had no idea that ambulances with no lights on are NOT just driving around waiting for an emergency - they are typically actually transporting a patient from home/a facility to a hospital/doctors appointment and then home again. I have lived in ignorance for years!
I have also learned that my patience is not where it needs to be. I can feel myself getting frustrated, and then I become frustrated because I am getting frustrated, and the cycle continues. As a momma learning new trick with special needs babies, I have a new appreciation for "age 2-and-under nap times." I have learned to turn off my phone, and take a long, looooooooong uninterupted hot shower, and it is pure bliss. (Don't worry. The babies' nurses keep an eye on them while they sleep.)
We have been home for three weeks, and we have had lots of 'excitement' to fill pur time with. Emmett has been in the ER 3 times for diverse issues, 2 related to j-tube (feeding tube) concerns, and 1 related to breathing issues. He showed signs of respiratory distress, and was hospitalized for a week as a result! He was started on Zyrtec, and seems to be breathing a bit easier since discharge. Owen has been keeping himself and his nurses busy at home, and has figured out how to clamp off his tubes! These boys...they are smart, and into everything!
Owen is also learning to transition from sitting to tummy-time, and by transition, I mean he performs feats of acrobatics with similarities to failed somersaults. It's exactly what it sounds like - leaning too far forward until he falls forward! It is quite cute. Emmett is too chill to try acrobatics yet. He is such a content baby, though when he sees a toy he REALLY wants, he will take a small tumble as well!
Both boys are all smiles all the time, and I LOVE seeing their smiling faces first thing in the morning, throughout the day, and before they go to sleep.
God has seen us through. And here they are:
Aren't they beautiful?
This day, Thursday, June 12, 2014 will forever be a day remembered in our little family. We are overjoyed. Overwhelmed. Exhausted. Full of love and hope. Worried. Relieved. Enamored. And yet we are still missing two boys. Liam and Ethan are both in AR with family, but we will all be home soon.
Owen had a small setback Wednesday that prevented us from discharging from OCH as scheduled. He has one of the recurrent infections that we have to continually watch for signs of. Our dr's thought it would be better to treat him and set us up for success before sending us out the door, and as disappointed as I felt, I'm so glad they had the foresight to keep us a little longer.
Emmett had a small procedure (broncoscopy) at Medical City this morning, and we bumped into old friends and familiar faces, and Emmett handled everything like a champ.
Our journey has been difficult, but look at the outcome, beautiful boys (4 of them), new relationships, growth, understanding, love, faith, patience, happiness...
"A woman giving birth to a child has pain because her time has come; but when her baby is born she forgets the anguish because of her joy that a child is born into the world.
So with you: now is your time of grief, but I will see you again, and you will rejoice, and no one will take away your joy."
- John 16:21-22
How undeserving I am.
Much love to you all.
Well. I can't wait to tell you all, so here it is:
THE BABIES ARE COMING HOME ON WEDNESDAY!!!!!!!!
Less than one week and they will be in our home. Four days shy of 11 full months in the hospital. EEEEEEEEEEE!!!!
So, we are obviously VERY excited, and a little nervous, as there are a lot more germs in the real world than there are in the hospital world, but these boys are strong, and God is the Protector and Healer. And by golly, if we haven't been shown time and time again - God's got this. Our future, our present, and our past.
Let us all do a happy dance, and praise God!
Now, for the rest of the news.
THE BOYS ARE OFF THE VENTS!!!!!!
Cue happy dance number 2! They are breathing on their own all the time, and they are tolerating it VERY well! Praise The Lord!
I think that is all the really big really great news, but wowie. That is good stuff.
Since the last time I posted a blog, I have had several family members help us with the big brothers so that I could maximize time with the babies, we had a family portrait,
we have been blessed by Sylvan Hills Church of Christ in Sherwood, AR, MY BROTHER (Tris Gale) AND SISTER-IN-LAW (Sarah Gale) RAN A MARATHON IN EDINBUROUGH, SCOTLAND to help raise money for the babies,
I hope the close of this day left momma's feeling loved, pampered, and appreciated! You all deserve it. I feel very blessed to be surrounded by so many examples of beautiful moms, all different, but all amazing in their own special, God-gifted ways. In my family, the women are all headstrong, independent women. Dave's side is full of compassionate, tender-hearted women. Dave and I are grateful for our moms, grandmas, cousins, and aunts. To the ladies of our families: you are amazing, and we love you.
Now then, the babies.
Emmett and Owen have been very busy boys, making us a very busy family! Let's start with Owen.
This little guy continues to impress us with his tube-pulling and trouble-making. Both babies still have central lines for fluids and in case of emergencies, and Owen's line had nearly worn through. Luckily, we caught the wear-and-tear soon enough and a simple tube repair was the only preventive maintenance needed.
Owen's diet had to be adjusted because he is not gaining weight like he needs to. He's kind of skinny! They increased the quantity of his intake, which increased the caloric intake, so hopefully, he will pudge up like his brother. I think his activity level is preventing him from gaining weight - he's such a wiggle worm!
Owen has also begun Passy-Muir trials (speaking valve) and he is doing so great with them! I LOVE hearing him talk! And being the terrible momma that I am, I made him go from sitting up to laying down JUST SO I COULD HEAR HIM CRY!! Oh, my. We both cried - Owen from frustration, and me from the joy of hearing my baby after 8 1/2 months of silence. He has such a sweet little voice!
Owen's J-tube is giving us fits as it really doesn't want to stay in place, and it is continually pulling out just a little bit forget, then a little bit more, which has ME giving the nurses fits because I don't want it to become displaced. I am hoping that he doesn't come home with a fragile functional J-tube. I have a feeling hat if this is the case, we will be visiting the hospital frequently.
Now for Emmett.