It's finally all sinking in

After days of research and speaking to friends, family, and professionals the past couple of days, our, well, only option, seems to be sinking in. Our array of therapists have been a great support in encouraging us that this doesn't have to be permanent, that he does need this to gain weight (because we've been stalled for a few months now), and it will just improve his overall quality of life.

It will look something like this.

Our nutritionist thinks that since he can handle large oral bolus feeds, 8oz pediasure bottles, that we should be able to completely forgo a feeding pump and just do gravity fed bolus feeds with a syringe. This means he will not be a slave to the pump, won't constantly have a long tube from his belly to the pump that could be a major cause for accidents.

Plus you can decorate and accesorize! We can make this fun for Gav as well as for the other boys. They make "belly button" covers, which not only decorate but also have added medical benefits which absorb, reduce friction, and protect.

  

They also make binding bands with turtle shell openings to have access that provide added protection and stability

. 

It's also starting to sink in that the button won't limit his life anymore than his Cerebral Palsy already does. I think it's just going to take a little time to adjust and learn, and for Gavin to heal.

We have our surgical consult on Tuesday morning so I will be sure to update after!

equiptment galore!

So besides the much unanticipated conversations about the g-tube we have some things to look forward too...

Equiptment!

Gavin is finally getting fitted with some equipment that will help support him in order for his body to properly grow, provide support in order to learn new skills and interact with us as a part of the family. Gabe as well! I am BEYOND excited.

KidKart TLC

It will provide lateral side support as well as head and neck (with his optional headrest included). It can be turned around to face me when pushing or out forward. It also has the tilt in space feature to recline! Now when we go places he will have a place he feels safe and secure that can accommodate all his needs.

Squiggles Stander

Obviously not in pink! His will be a little different but this is a general idea. He will be able to lay on his belly tilted up flat, his back tiled up flat, or stand erect in it. It will also have a place to hook on a tray in order to stand and play. Standing and not being in a chair will allow him a "regular" point of few as well as decrease his risk of blood clots in his legs from being stationary.

KidWalk Gait Trainer

His will be a little more involved with a chest support and head rest. But this will give Gavin the opportunity to learn to walk and be mobile!!!! I am beyond excited. I think just having the opportunity (even if progress takes a while) will boost his self esteem incredibly!

We are also getting a Rifton Bath Chair as our infant bath seat is becoming to small for our growing boys :)

Gabe will only be getting a walker. He is doing so well progressing in his skills. We still have a mild delay but he is starting to catch up!

He will be recieving a Rifton Pacer.

It will be about as involved as the picture. Gabe really just needs it to learn to walk correctly with his new AFOs and to provide some stability as his CP causes muscle weakness in his lower body. He bares a lot of weight in his upper body when he takes steps. Our hopes are to one day graduate to crutches or hopefully to walk unassisted! But for now this is it.

We should receive our stuff within the next 4-6 months.

G-tube. The day has arrived.

Well Gavin had his swallow study yesterday. They noted that he has insufficient suck/swallow. He has deep laryngeal penetration on all flow levels and consistencies, and aspirated on all flows faster then level 1. They suggested that we may need to "consider alternative feeding methods (other than oral) for meeting nutritional needs and efficiency of feeding."

What they were dancing around ever so politely was that Gavin was needing a feeding tube, which we have tried so hard to avoid. They stated that we are at a critical fork in the road. We could continue down the path we are on and potentially and subsequently compromise his respiratory system and subject him to chronic illness or we could surgically place a feeding tube into his stomach for liquids and still continue to do oral feeds with solids or controlled bolus's. He passed with flying colors on solids because his neuro-motor control is stronger. The liquids he's drinking are seeping into his lungs and he doesn't/cannot cough to expel them. Essentially he is drowning on dry land a little each bottle he drinks.

They said absolutely no water or thin fluids via bottle or sippy cup. He did excellent with pudding/applesauce/banana/and pb&j while we were there. The attending physician just said that consuming solids would tire him out too much to consume fluids. They recommended only offering the Pediasure in a level 1 nipple *but with fatigue he has at risk for aspiration* until we come up with a plan. So today we set the gears in motor. I contacted the ordering physician, which was his ENT, who said at this point it isn't a structural issue he can fix surgically but one we would have to refer to our general pediatrician to follow up on. I placed a phone call to her nurses, and tomorrow we should have a plan. There aren't really any excellent pediatric GI surgeons in central Illinois, as it seems we live in a pediatric medical dessert, so we will most likely have to go to St. Louis Children's. We still have to follow up with Gavin's Urologist about his scrotum/testicular surgery and schedule his eye surgery. We are going to try to do some combination of them so he only has to be put under once or twice but I just don't want to overwhelm his body too much to compromise his ability to heal efficiently and without infection.

It is the right step for us at this point. Gavin hasn't gained any weight in almost 3 months. Gabe is now up to 27 lbs while Gavin has been hanging tight at 22 lbs. He is also only meeting 50% of his fluid/nutrition needs daily now because drinking the pediasure is either becoming too painful or he is becoming disinterested in drinking 5 vanilla pediasures a day for his fluid needs and then being too tired to consume food.

I will update as soon as we have more concrete information.

Toddler Tantrums

Welp, we've finally hit the age. The age of extreme tears, flopping on the ground like a fish out of water, and little scrunched up shoulders and stomped feet. The times of sweet smiles and funny sounds are in the days of yester. Ethan is now the king of yelling "YES" back every time anyone says "no." He is also getting so bossy to Gavin and Gabe. It is his way or the highway. Just tackling that wouldn't be an issue but now Gabe is the same way! Instead of using his words though we are full of bites, hair pulling, little punches.

I am one frustrated mama.

A Day in the Life

I am making a conscious effort to update our story more often then before, not only for my family and readers, but also for my sanity and memory. We are always so busy I love thinking that I can look back and be reminded of all that we've been through and have overcome! 

Many of our days include 2-6 hours or formal therapy for all three of the boys. Gavin is currently getting occupational therapy, physical therapy, developmental therapy, and speech therapy once a week, United Cerebral Palsy's Play to Learn program and seeing his nutritionist bi-monthly, and a vision therapist monthly. Gabe receives all the same therapies as Gavin besides vision. Ethan receives speech therapy once a week and occupational therapy twice a week as well as UCP's Play to Learn bi-monthly. 

In case you don't often read my twins have multiple diagnosis'. Gavin has been diagnosed with Spastic Quadriplegic Cerebral Palsy, Plagiocephaly, Periventricular Leukomalacia, mild Scoliosis, Torticollis, GERD/Reflux, Vicious Cycle Constipation, Casein/Soy/Gluten Intolerance, Strabismus, Ambliopia, Farsighted, and Global Developmental Delay/MR. He also has feeding difficulties and aspirates <70% of the time on all consistances of fluid. He has been hospitalized multiple times for dehyration and pneumonia. Gabe has Spastic diplegia, historically known as Little's Disease, Cerebral Palsy, Plagiocephaly, Brain cysts indicative of Periventricular Leukomalacia (but never formally diagnosed), mild Scoliosis, GERD/Reflux, Vicious Cycle Constipation, Casein/Soy/Gluten Intolerance and sensory issues almost identical to Ethan. Ethan has Sensory Processing Disorder. He is a sensory seeker. He has an extremely high pain threshold, has food, smell, and texture avoidance, has improved eye contact, self abuses (head banging, belly flopping, hitting himself) and has a speech and language delay.

On top of our multitude of therapies we also have 2-3 medical appointments a week for various things, whether a full doctors appointment, swallow study, x-ray, lab work, second opinion, its always something. The boys are currently seen by ENT, GI, Neurology, Orthopedic Surgery, Orthotist, Developmental Pediatrician, Regular Pediatrician, and Ophthalmologist. Everything but our general pedi is located 90 miles south west in St. Louis so I am constantly in the car with three little ones 2 and under by myself.  With Tim, the boys dad, working crazy hours to support us, most days were like ships passing in the night. We are up 7a-10p and he's working or sleeping generally. 


So besides therapy and medical appointments, the rest of our day is full of picking up and dropping Xavier off at school or his moms, trying to maintain my house (mopping floors HA!), trying to spend time in one place as a family, and hanging out watching movies when the little ones go to sleep. 

I think the hardest part of our days is getting everyone ready and out of the house. It's not to often that family members or friends actually offer to come down to visit or to help with the boys/around the house besides a select 1 or 2 (you know who you are :) ). It seems as though everyone is just as busy in their own lives. Getting three boys bathed, dressed, brushing teeth, changing diapers, feeding bottles, putting on the twins AFOs, then shoes, plus coats, hats, making sure I have pediasure bottles and nipples cleaned and packed, the diaper bag full of extra outfits and eye patches for Gavin, some sort of chairs for the boys to sit in (because people ultimately get tired of holding my kids), getting all three outside and loading everything and everyone up into their 5 point harness car  seats,  just to drive to our appointment, unload into the double stroller, strap one of their into the backpack carrier, take the inside to unbundle and pack them alone..... only to stay 1-2 hours.... is freaking EXHAUSTING. 

I am never on time and always late. I am constantly forgetting things and having to stop and spend more money, that we don't have, to buy replacements (pediasure $15 for a 6 pack, Dr. Browns bottles, pacis, diapers, wipes, a new outfit because Gavin threw up on his). And if we're going somewhere further away from home? The drinks and snacks and toys to keep them occupied, diapers, extra clothes, oh it's like packing for a week long vacation every time we leave and most of the time just thinking about the work that goes into it is exhausting enough to make me cancel and say NO WAY. Then just the cost of driving, packing snacks, and more supplies then are typically used at home, financially is enough to make me want to stay home.

I think friends and family that we in our lives prior to having the boys have just settled into thinking we've got it handled and wouldn't use the help, or they are just too intimidated to offer. Thankfully we have settled into a routine and have cut certain corners to keep our sanity. (which is why I now have short hair and half the time you see me I've been in the same sweats for three days and have to be reminded I smell like a donkey lol) My children are provided for the best way I can possibly provide for them and I am just so grateful to even have them in my life after all we've been through, it's hard to complain about the work. I couldn't imagine my life without them. These little boys have taught me more about compassion, love, perseverance, and acceptance in the two years I've had them then I could have learned in a lifetime had then not been a part of our lives.

I may wake up everyday to Ethan ransacking the "root cabinet" with a confetti explosion of onion peels everywhere, Gavin crying because he's back scooted himself into a corner of his crib and got his arm stuck through the bar, or every Gabe finger painting in his own poop, but I wouldn't have it any other way. 

Update November 2013

Well I have really been slacking on updating the blog. We have had tons of appointments with the toys and just settling into our new house after the move took a lot longer then expected. Gabe and Gavin are now just shy of 16 months actual, 14 months adjusted.

Gabe is a mover and a groovier. The kid is non-stop now. He is pulling to stand, cruising, crawling, and sitting unsupported. We still haven't stood unassisted. His glutes, hip flexors, and hamstrings are just too darn tight. Our Orthopedic surgeon wants to try botox injections in those targeted areas in January. He is self feeding and finally sleeping through the night. Once he learned how to sleep on his belly and cover his entire self up with a blanket, head and all, it was easy. He is saying almost 20+ words now on his own and is starting to repeat easy words. Today he said "santa" for the first time. :)

Gav is one tough cookie. He is still not rolling, sitting, standing, cruising, ect. We are starting to reach for toys and belly crawl forward though! He still gets his "tight" arm stuck under his chest when attempting to crawl on his belly but is overall doing well! He was just diagnosed with Strabismus, Amblyopia, and far sighted. We have to get surgery soon to realign his eyes and patch his right eye to continue to strengthen the left. We also have to see a Urologist on the 4th to consult about a testicular surgery. His bits never made their way down to their final destination so we have to go get a little help to finish their journey. They will only be putting him under and doing the one surgery at the same time. He is starting to babble though and now says, "baba, dada, and hi." It is a little delayed but is MAJOR progress from being as non-verbal as he was. We are also progressing in feeding and trying to incorporate solids of different textures and varieties. It is time to get him off this stinkin pediasure.

Ethan is a little squirt. He is starting to use full sentences and voice his wants and needs. He is still repeating almost everything everyone asks him in full but we are finally starting to voice our own wants here and there. He can now count to 10 on his own, name almost all the shapes (but still gets rectangle and square mixed up), and can sing the alphabet. :) His current favorite show is Caillou and his favorite songs are Twinkle Twinkle Little Star, Apples and Bananas, Shake your sillies out.

Check out our new blog on green living

Check out our families new blog of green living at CrunchyMa It offers ideas, recipes, and suggestions on how to live your life my frugally and eco friendly with a large family.

Well I have sort of become a slacker and totally side tracked the blog for a little while now but I think it may be time for a come back. I forgot the original reason I set out to write this blog, besides give my grandparents, aunts, uncles, and cousins a place to see how we were doing, but to help educate other mothers on what life is life before, during, and after being diagnosed with twin to twin transfusion syndrome.

Both of the little ones are now 12 months actual 9 1/2 months adjusted. Baby A, Gavin, was born with Periventricular Luekomalacia, an open PDA, and jaundice. He was on a vent for 6 days before breathing independently and it wasn't for 35 days that he didn't have any A's and B's before he could come home. My baby B, Gabe, donor, was born with brain cysts and jaundice. He was on a vent for 2 days before breathing unassisted and also stayed 35 days in the NICU even though he was ready to come home at day 28. He just couldn't stand to leave his brother behind.

After both starting out at 3lbs 11oz and 16in tall, Gabe is now 20lbs 10oz 30 in, and Gavin is 22lbs, 30in. As far as weight and growth go we have made tremendous progress. We just recently were evaluated by physical therapy through Illinois' Early Intervention Program provided at St. Johns Hospital, where the boys were born. They found Gavin's gross motor skills to be there of a 2-3 month old  with a 78-90% delay and Gabe's to be that for a 4-5 month old with a 40-56% delay. We are also still currently doing Speech therapy, Occupational Therapy, and Developmental Therapy once weekly for both boys. Gavin is also doing Vision Developmental Therapy and going to an Intensive Feeding Clinic because he is still not eating solids.

Gabes diet consists of 2 8oz pediasures a day, once before bed and one split in the morning and before nap, and regular ol' table food. Gavin is on 4 pediasure's a day and is practicing with purees and soft diet foods dipped on a chewy or duo spoon.

We are getting so big and chugging right along! :)

Happy first birthday

Well, tomorrow is our twins first birthday.

If you asked me a year ago today if I thought I could have survived this I would have told you I wasn't sure. But here we are, doing the best we can with what we've been given; two beautiful little boys. I wasn't exactly sure how I wanted to write this piece, as I have been sort of slacking on the updates recently, but I think I will start out by writing letters to both of the boys.

Dear Gavin,
         I am crying as I write this to you because you have changed my life and blinded me by love. With all the difficulties and hell you have put me and your father through this past year, I would live it over and over for eternity. I worry about you the most out of all your brothers though. I have days where I imagine you running around playing with all the kids in your braces and not so great ones where you challenge me so much I'm not sure what to expect.  I have high hopes of you being able to become self sufficient and keep up with your brothers but even if you don't you will have surpassed anything I could have ever imagined for you after we found out about you boys' diagnosis during pregnancy. We were so afraid we were going to lose you, but you, Gavin, are a fighter. With everything you have going against you, you are the happiest, most loving little boy. I wait a few minutes to wake you up in the morning just to listen to you giggle to yourself trying to get my attention. The way you follow your brothers around the room with your bright blue eyes makes me feel like you are just waiting in there to get out. I promise to you that I will always do whatever I can for you to help you feel as loved as you do and are right now. This isn't quite what I had expected to write but I want you to know that I cannot wait for the next year and all the years to come. You really are my sunshine.

Dear Gabe,
        Never did I expect to get such a little spit fire. You mister are my little drama queen. You may be the baby of the bunch but you little man are the ruler of the roost. If it isn't your way its the high way and that's just the way you like it. You don't realize you have things that hold you back. You think you are 1 going on 3. You scoot along on your belly right alongside the big boys and think you're one of them. You have no idea how absolutely amazing you really are. You are the smartest little boy. I remember I thought I was going crazy when you said your first word, because I thought it was too soon. We were all sitting around in the play room and you said "bu-bble" as one floated right by and kept on repeating yourself. "bu-bbbble, buuuuh-ble." You make mommy so proud each and every day. You have also surpassed every one of my expectations and I love the challange you bring me everyday. You are an amazing big little brother looking out for Gavin and he will forever be grateful to you, as am I. You teach me new things about myself and the world everyday. You are the moon stink. I love you.

:) 

BathGabe being a goofy little man :)

All my kids are always naked, yes lol

Gavin playing in the walker

Cuddling in the swing during therapy 

Gabe and Ethan 

Gabe saying dada

Gavin sitting like a big boy 

Quick sink bath for Gav man 

Gabe always trying to squeeze into the tight spots lol

Gavin being a happy camper at the library's summer reading kick off party! 

Ethan at the petting zoo being bashful! :) 

GavYou know, disability or not, my children are absolutely perfect. I know people may look at us weird, or be afraid or overwhelmed to visit or spend time alone with them, but they are the greatest blessing I've ever been given. I wouldn't honestly trade a single part of my life for the world. 

My boys clockwise: Xavier (almost 7!!), Ethan (21 months), Gavin & Gabriel (10 months).

Big man running in his sprinkler! :) 

E and his cousin Jonah (2 yrs), giving me the stink eye when it was time to come in! Playing at Ethan's new water table :)

Gavin's new "moon boots" :) 

Finally gaining a little head control! 

Gabe being a silly goose :) 

Aunt Kristen and Gabe :) 

New sandbox :) clockwise from left:dad, Gavin, Xavier's cousin Zander, Ethan, and Xavier. They were all having a blast! 

Gavin especially loved the sand! Gabe had to miss out because he was napping. 

Hanging with his brother always picking his nose lol

Gabe and Ethan sharing a bagel. They were offering each other bites, taking it back fast, and laughing at each other. 

Waiting for his ride to Sunday school! He got to go to the 3yr old class today. He flirted and played with 2 3yr old girls and a 4 yr old. Already a ladies man! 

Happy boys! They got to giggle with mama while big brother was at church :)