Two words: BIRTHDAY PARTIES.
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.
"It's time to say goodbye, but I think goodbyes are sad and I would much rather say hello. Hello to a new adventure."
~ Ernie Harwell
Well, it's been a week since the babies left the NICU at Medical City, and what a week it has been!! The hardest part was saying goodbye to the people that we have grown so close to, so accustomed to, and that we will miss so much. I am very thankful that 'goodbye' only means 'until we see you again!' Saying goodbye is especially not easy when one is crying so hard that the farewell recipients could not even be seen!! (I have NO idea when I became so emotional!) I am happy to say that we have had a couple of familiar faces visit us, and we are expecting more. (So if you are a familiar face, and you haven't been for a visit yet, I have two things to say: 1.) you have an open invitation! 2.) we miss you!!
The babies have settled into a routine and are enjoying new friendly faces and lots of new activities. Dave and I strongly believe that Emmett and Owen handled the move and transition better than we have. They are strong resilient little guys! Emmett has a small infection, and wasn't feeling himself, but once that was addressed, he is back on top! Of course there have been other hiccups as well (J-tube balloons bursting, g-tube tubes almost slipping out etc., but fortunately, God continues to look out for our boys.
Ethan once again started a new school, but he was excited about meeting new friends and his new teacher, and seems to be handling the change incredibly well.
Liam (our 2 y/o) has been staying with our dear cousins Fred and Linda during the week and coming home on the weekends I miss my sweet little guy.
Which brings me to our move this past weekend. We found a house to rent that is perfect for our family's current needs: 4 bedrooms, 2 bathrooms, and a HUGE formal living/dining room that will be perfect for the babies and their nurses! I am looking forward to setting up a nursery for the babies, but we have a lot of needs to meet before we get to that point (like cribs!). I don't know what to expect as far as medical supplies and storage solutions. It will be a work in progress. And it will change as we move forward. I can't help but be excited that we are actually AT this point in our journey! I told Dave that I finally feel a sense of calm in my being. We don't have impending surgeries. We don't have to find a house. We don't have to move. We are here. And all is well for now. There is but one downside - my utter lack of motivation to unpack. It is a lease. We will be moving again. Enough said. *long sigh*
Dave and I would like to say a huge "THANK YOU!!" to a few people for sacrificing their Easter celebrations with family to help us move. His parents, Dean and Carol Ezell (who have helped us work through lots of life's doings), Jon and Sarah Ezell, (who have helped us numerous times since our initial move to Dallas), and Grant Potter (one of Dave's best friend's brother!). We could not have done it without you all!
Dave and I have been participating in as much training as we possibly can at Baylor Our Children's House (OCH). I don't think I realized how little I know until I started learning it; however, we were given a head-start on some of the training by some pretty excellent nurses at Medical City (*ahem Amber, Angie, Priscilla, Gail, Heather, etc. :o). I have begun learning about breathing treatments, vent settings, how to do breathing assessments, and a small amount of managing feeding pumps and maintenance. I am also being shown activities to do with the babies to encourage gross and fine motor development by some pretty great occupational and physical therapists. And I am learning new tricks from the speech pathologists as well!
Do the big question is 'how long will we be there?!' The answer is 'I'm not sure.' It depends on a lot of things coming together at the right time, and with God's help, He will see us through. In the meantime, we've got plenty to learn and to prepare for!
One last thing from me, and then some words from Dave:
For those of you who are worried that I will not continue to update you with the babies' progress - ease your worries heart! I promise I will continue to update you and provide pictures of four of the cutest boys that God has ever given me!
3 good things:
1.) a peaceful soul
2.) a beautiful place to call home
3.) new friends and new neighbors! (I'm talking about YOU, Sonny and Shirley!!)
Credit Where Credit is Due
The last week and a half has been a blur. In that time we have said our heartfelt thanks and goodbye-for-nows to our Medical City family, we moved the boys into a new medical facility, we have found a house to meet our family’s needs and we have moved into the aforementioned abode. Along with that list of epic life changes, we’ve tried to juggle work (Dave), new school routines (Ethan), new hospital routines (Jen and Dave), new traffic patterns in a new town, Easter, and somewhere in there find time to sleep. I think my blood pressure elevated slightly just typing this list. Needless to say, over the course of the past few weeks, God has lifted this weary family up on his shoulders and carried us to the next leg of our journey.
During this tenuous transition we have experienced an unparalleled outpouring of support. During the house-hunt Cassandra Stahl (our amazing realtor-we highly recommend her) worked very hard to help us find a home, but not just any home, the right home.
During the move to the new house, a number of folks stepped up and I’ll mention each one individually:
Dean Ezell (affectionately referred to by me as Dad) – You, sir, are spry for an older gent. Dad worked his tail off to make sure we were able to able to get everything moved into the house in just two days. Thanks for your help Dad. I owe you. Truth be told, you outworked some guys half your age. You should be proud of that feat. I know I am.
Jon Ezell (Cousin Extraordinaire) – You went out of your way to help family; that means something. Jon worked relentlessly without complaint to the finish. Thank you my friend. I’m in your debt.
Grant Potter (Affectionately referred to by me as Josh Potter’s smarter and better looking younger brother) – You gave up a day of hard labor for someone you’ve met once, and only knew by association. You showed the content of your character. Grant is a truly impressive young man with a very bright future, and I’m not just saying that because he helped me move. Grant I can’t thank you enough for your help. It means a lot more to me than I think you realized.
Our move into our new home occurred over the Easter holiday weekend. During the move some thoughts continued to surface for me and I thought I would share them.
First you need a little back story. When my wife and I were searching for the “right” house, our search came down to two houses. The first was a spacious 1 story house with a large ante-room just perfect for the babies. The second was a spacious 2 story house with an excellent play area upstairs for the older boys. Jen preferred one and I preferred the other and we actually got into an argument about which house would be best. The house I preferred fell through but we lucked out and were able to move into the other.
Christ sacrificed everything to provide the possibility for those who follow him to have an eternal home with him in heaven and we celebrate this on Easter. Thanks to Christ this world is not my home. Everything in this world is simply a gift from God to provide for our needs while we are here. Rather than argue with my wife about a house I wanted more, I wish I’d recognized God’s blessing and thanked him for continuing to provide for us. It is so easy to get caught up chasing after what we want that we forget to be grateful for what God provides.
I can hardly believe it, but it is true - the babies are being discharged from Medical City Children's hospital tomorrow!!! We are very excited, and maybe even a little nervous, but wowie! Definitely thrilled beyond description.
Ethan is looking forward to seeing his brothers 'every day!' once they arrive at Baylor Our Children's House (where Dave and I will be extensively trained on caring for these boys). We don't really have a timeline on our length if stay there, but I am guessing we will be there at least 3 weeks. I have a lot to learn, even though the nurses at medical city have been preparing and training me if months!
In the meantime, Dave and I will be moving our household to a HOUSE (no more apartment life! Woohoo) and getting the babies' space ready for them for when we REALLY bring them home. All of life is a process, and we are still working our way along.
So, boys being discharged, moving, I think that's enough. Our plate is full, and we are blessed.
3 good things:
1.) God is good
2.) Medical City doctors, nurses, food services, family support, and all that I have left out, you are AMAZING.
3.) family, we wouldn't be here without your support.
It's that time again. Crunch time.
We have been consistently hearing for the past week that the babies are coming home in April/May. Being that it is now April, I am officially in panic mode.
This past weekend, Dave and I seriously started looking for a house to rent. We are looking for a decent sized 4bd/2bath house, and we found one! But it had JUST been rented, as had 2 others we looked into. Finding a home to rent is going to be tougher than I had anticipated! But, I keep reminding myself that we will find the one we are supposed to have in God's perfect time. He has shown us this in the past, and by golly, I'm starting to believe it.
I am just hoping we are moved before the babies are discharged!
Speaking of the babies being discharged, Emmett is working hard to be weaned off the vent before he comes home. He is making a lot of quick progress. Owen, on the other hand, gets a bit more anxious about his trials off the vent. He doesn't like it, and he let's us know, but his oxygen sats stay where they need to be.
Owen will come home with an LTV (home vent), and Emmett may or may not.They will both come home with trachs, g-tubes for draining bile, j-tubes for feeding, and central lines, and yes, my friends, that is over-whelming. But as with all change, it will take some adjustment, and then it will become second nature. Despite all the scariness of having a small medical- equipment warehouse at my house, I am looking forward to having everyone together at last.
Ethan is so excited about his little brothers coming home, and about getting to move into a house that he asks almost daily, "Are we getting a house today?" One of these days, I will say "YES!"
Liam is not sure what to think. I tell him his little brothers will be coming home soon, and then ask, "are you ready for your little brothers to come home?" He always responds with a, "no?"
I am blessed with such sweet boys.
In the meantime, I had the opportunity to be an extra on a set for a documentary reenactment segment, and it was such an amazing experience. I stepped WAY out of my comfort zone, and had so much fun that I am ready to do it again!
Dave and I have also invented a pig-Latin like language to use when trying to speak in code in front of kiddos. We call it 'Jay-ibber Jay-abber." And we are working on writing and illustrating our second children's book. We are staying busy while we are awaiting the next journey that God leads us through!
I know several of you are wondering if we are going to stay here, or move back to Oklahoma or Arkansas eventually, and the best answer I can give is this: We are here for now. We have plans, ideas, and dreams, but we kind of have to follow where we are lead. And that is the way we like it. (On a side note, I have been wondering if those 'dreams/big ideas' that we all have IS where we are supposed to end up. We just have to have the courage to step out and make it happen...)
At any rate, be blessed and live life with NO regrets.
3 Good things:
2. Friends - new, old, and future ones
3. Knowing that we are ALL created for a purpose.
Life is never dull for too long around here. Never ever.
Last weekend, I met another mom of conjoined twins who lives in the DFW area. Her babies were born in last year. She has an angel baby (in heaven), a 4 month old, and two older children. I got to hold her formerly conjoined baby who is a cutie patootie. He and his brother were born a little early, so he is a little guy (which only adds to his cuteness factor). He is such an amazing miracle. But the thing that made the biggest impression on me, and that melted my heart was when he cooed at me. It seems like such a "normal baby thing" that I am sure most of you don't realize the significance of this moment. But first, let me tell you what it was like: his coo had such a rich tambre that his entire body vibrated with the sound. Oh. My. Goodness. It was incredible. I have not heard my babies since before they were 6 weeks old. I have VERY few videos of their cries. It still makes my heart sad. And it made me think, "It is time to push Emmett and Owen towards being weaned off the vent." That was my mission for my next visit to the hospital - to convince the neo-natologist that it is time. So I walk into the boys' rooms with my mission set, and before I can even open my mouth, the nurses and neo-natologists tell me that they are beginning to wean Emmett off his vent! I felt like God was laughing, wagging His finger at me, and saying, "In MY time, child. Be patient." It was a good feeling.
So this week, Emmett has been doing trials of time off the vent. So far, he is doing 15 minute sessions twice a week of breathing on his own, and for the most part, he hasn't had a clue. He slept through it one day, and has played through it the rest of the days. If he continues to do well, he will be increased to 30 minutes 2 times a day. So HOORAY Emmett!! *(he is currently up to 3 hours a day! I started this blog a few days ago)
Owens vent settings are still being decreased, and he should be ready for vent weaning sessions in a few weeks.
They are both recovering from a yucky stomach bug that had them down for SEVERAL days (4 or 5-ish). On their worst day, they produced 20 poopy diapers! They little bottoms were so raw that they very nearly bled! It is now their 4th 'feeling better' day, and thank goodness for it. I had no idea that a 24-hour bug would be so severe for these little guys. Lesson learned.
This past Friday, we had a little jaunt To the emergency room. As I was pulling Ethan's bike out of the van, Liam had climbed into the back of the van and then promptly fell out, face-first, onto the pavement.
It looked terrible. As a speech-language-pathologist, I worried about a brain-injury (concussion), skull fracture, and brain swelling. After less than 2 hours I was reassured that he would most likely be just fine, and to watch for any changes in his behavior. I can tell you with confidence that Liam did not like the emergency room, but all was made better with a popsicle (provided by the hospital).
One last thing, there has been a website created that compiles a small amount information and support for families who have found that they are expecting conjoined twins. It has a few informative websites, but it is more about the stories of families who have been pregnant with conjoined twins, and the journey that each family has taken as a result. The stories of these families are all amazing! The website is centerforconjoinedtwins.org.
If you are interested in other amazing families similar to ours, it is a great resource!
Blessings to you all!
3 good things:
1.) spring weather and spring break
2.) sweet boys
After months of planning to separate these brothers, and then a successful surgery, and ongoing recovery, Emmett and Owen were at long last TRULY reunited yesterday for their very first play date! It was the sweetest, happiest moment that they have experienced yet!
They played there hearts out until emmett just couldn't stay awake! He fell asleep while he was sitting up!
Luckily he had a comfortable backrest!
Owen stayed awake and played,
And eventually succeeded in waking up his brother. And not long after that OWEN fell asleep and Emmett returned the favor! Dave was able to be there for this epic moment. It was a good day all around!!
As for a quick update, Emmett went for a skin graft on Wednesday and has a cast on his foot to stabilize the area to prevent shearing/damage to the new skin. He is doing quite well with it. He is scheduled for possible g-tube placement in March.
Owen's incision is doing well, and he is back to his happy little self again.
The next step is to unite all 4 boys and conquer the world with cuteness and love. 😊
God continues to heal these boys, and we continue to count our many many blessings!
3 good things:
1.) Dave, Ethan, Liam and me getting a chance to go on a family walk yesterday.
2.) Receiving a meal from Dennis and Ruth Oldham. It was delicious!
3.) having nurses who go beyond typical 'nursing care!'