Saturday, December 22, 2012

Given that this is the season of giving and thanks I would like to dedicate this post to the ones who have helped and gave us what we needed to make it this far and be together for Christmas as a family.

First off I would like to thank my mother, step father, Tim's mother, and my aunt for giving us every ounce of emotional help and support they could have in getting us to this day. They have been our every resource and rock through the twins pregnancy and beyond. There is nothing I could ask you for that you wouldn't selflessly give to make sure my boys and myself had what we needed to survive and flourish. There really is nothing we could do to thank and repay you for all that you've done and continue to do. Just know that every good deed doesn't go unnoticed. I am a firm believer in karma.

I would also like to thank extended family and friends who have provided the boys with gifts even if they are just positive thoughts and prayers. I am generally overwhelmed by taking care of these little guys I don't always get the proper thanks out so here it is. We really appreciate everything you have done in sending gifts, for their birth, prayers for their recovery and positive thoughts for their well being.

I would like to thank Dr. Abrahms for being such a well educated physician and diagnosing our boys with Twin to Twin Transfusion Syndrome early. Without this we could have missed the small window of action in order to save their lives.

I want to thank Dr. Thompson for taking my complaints of discomfort seriously and not taking them for regular pregnancy discomfort. I flatlined prior to delivery. if I had not called and gone in for an ultrasound, I would have died in our home that morning with the babies. Ethan would have been motherless and my family without a girlfriend, daughter, niece, and a friend.

I am thankful to the educated medical staff at St. John's Hospital for saving my life as well as my children's. You brought me back to life and gave my children theirs. You were their first home and their mother when I couldn't be. I will forever be grateful to the wonderful nursing staff who attended to my boys every cry and need while I had to be away from them. I am thankful for the doctors who assisted my sons in their first breaths when they couldn't on their own, the doctors who provided treatment to the boys when they all fell ill. If I could find a way to thank you properly I would. Individuals really need to be personally thanked and I'm almost to a place where I can achieve that.

I would like to thank the Fetal Care Center of the Cincinnati Children's Hospital for providing me with the nurturing comfort and sense of safety for my unborn sons. Without Dr. Lim and Dr. Habli, who preformed invasive in utero surgery on my placenta to make it a hospitable place for my boys to thrive, they wouldn't be here today. They provided me with a wealth of knowledge and a sense of trust that made the experience the best it could have been. I am also forever thankful to you.

I am thankful for Mary at the TTTS foundation for providing us with a place to stay before surgery and educating me on the condition and the procedures when I was too overwhelmed to help myself.

I'm thankful to the Macoupin County WIC and Illinois State Department of Public health. The ladies at WIC have gratuitously taken us under their wings and found a place in their hearts for us. They have provided and gratuitously donated clothing, food and formula, toys, cloth diapers, wipes, winter coats, support, and love to us without asking for anything in return. These ladies are an indispensable program and a joy to have in our lives.

I am thankful for BabyCenter and the wonderful supportive fellow mothers I have found since the beginning on this pregnancy. Other TTTS moms, twin moms, moms to boys, first time moms. I cannot tell you how much it meant to have a support system of woman who don't know you in real life but offer up their love, prayers, and support like you're their family. In times of great stress people in your life tend to get scared and fall away, but these ladies helped me through sleepless nights and stressful procedures, long days in the NICU, and silly little things after bringing the boys home. They are just amazing.

I would also like to thank Cottonbabies for their Share the Love program. We were gratuitously donated 45 cloth diapers or the boys. This completely eliminated the cost of buying diapers for our boys and save us from the huge financial burden. It gave us a step up financially to get caught up with our medical bills and general daily expenses. The twins NICU stay was $30,000k per week, or $210,000 total, not including tests and procedures. We are a long way from being debt free but the fact they eliminated one expense monthly for us means when can get started on paying back what we owe for the boys care. I am thankful that this program is out there for mothers and families who are truly in need. They are really a blessing! When we get settled with the boys I would love to become a host site for the program to give back to other mothers who are in the same situation we are.

I'm not generally an overly religious person but I would like to thank God. For providing me with all these people and resources, for bringing me back to life, during our traumatic delivery, and after in spirit. You read about maternal death but every mother thinks "not me." I could not imagine Ethan growing up with a mother or his two new little brothers. It brings me to tears. I am thankful for my life and to you for sending me these three perfect boys and their loving father. For guiding me through the wonderful hell that has gotten us to where we are now. I am thankful for you showing me and allowing me to feel real love after so many premature and failed relationships. For leading me to a man that will stick by my side through anything and provides love and compassion and is an excellent and supporting father to our sons. For giving me a family to lean on.

When we are able to we will give back and help others that are in our position or where we were then. Right now were doing the best we can and helping ourselves through the aftermath of this journey financially and emotionally.

I just want to say Thank You, everyone.



So I'm exhausted. Tonight will be a quick update to all our readers.

Gavin's echo and EKG showed his open PDA and a mild tricuspid regurg. We will be referred to a cardiologist and developmental pediatrician in St Louis.

Gabe has just started lifting his head up during tummy time :)

Xavier is pumped for Xmas.

And Ethan is cutting four molars at once! Talk about a grump.

Here's a few pictures. Be back in the am! My laptop battery is shot and the charging cord broke tonight so I'm with my laptop and too lazy right now :)


















Tuesday, December 18, 2012

Having a toddler makes me feel like a rehab patient doing the exercises with the horse. 

It comes that time of day that we need to get dressed and I have to chase him around and try to corner him into a tight spot that he can't escape. I have to slowly approach him with caution, as to not spook him. and then try to get him to lift his chubby little leg off the ground in order to put it in the pant leg. Talk about drama. And then I have to try and get the shirt on. Hence the reason my son is naked in almost all the photos I post of the blog. 


Anyways, tonight we did two productive things. We made a homemade baby K'tan style wrap and put up our Christmas tree. Yes we put it up 7 days before Christmas and I will have to tear it all down and try to jigsaw it all back into our storage closet. Was it worth the effort? No. Was Ethan so excited to see it? Yes. 

He swats at it like a cat. He hits the fake scratchy branches and watches as they recoil and hit off the ornaments. Oh and the ornaments. My tree will be naked from his reach down by the end of tomorrow. He just removes them all from the tree and then takes the top part completely out. The part that pops into the glass ball. It wouldn't me so much if they weren't glass and if he didn't get pleasure from destruction. 
This is our tiny tree this year. 

Next year we will have a tree like this. 

With three toddlers, 1 two year old and 2 one year olds, I would have no sanity trying to keep them off a traditional Christmas tree. The thought of the little herd of children I will have scares me enough not to give them ammunition for their little mischievous plans. I already told Tim we will be bolting all our furniture to the walls. 

And on to that homemade baby wrap. It was sort of a pintrest/babycenter member suggestion/youtube project. I made a homemade baby k'Tan style wrap for the cost it would have taken me to drive to goodwill to get some woven tee shirts without side seems, (or the deep abyss of Tims side of the closet for old shirts he hasn't touched since 2010.) 

It consists of three t-shirts, a piece of strong woven yarn/string/shoelace ect, and scissors. 

I'm sure you could make this adorable and affordable by going to the local fabric store and buying off the sale rack. But then you have to try to serge ends on fabric to keep up the hold, buy the thread, spend the time, ect. The way I did it took 5 minutes tops. Wham bam thank you mam.




It is big enough and versatile enough for me to hold all three of my children, 12-30lbs :) 

Here are a few more pictures of the boys before I hit the sack before Gavin and Gabe wake up. 

the rare Gavin smile

Gabe- "Oh my god mom that wasn't a fart"


Well today we had Gavin's echo and EKG. They found a new murmur at our last visit. We are awaiting the test results. A pediatric cardiologist is supposed to call us this afternoon. Since it was outpatient at the lab we didn't see a dr after.

He has his appointment tomorrow to get social security. This will help us with all the copays for his therapys and specialist visits because they're piling up fast. Hopefully we can also use some to get into a first floor home.

Gavin also has a barium swallow study on December 31st to see if the wheezing /gagging/coughing during his feedings is due to aspiration. It will also show us if he truly has acid reflux or if his constant arching of the back and irritability during and after feedings is due to his PVL.

We also have a follow up eye exam on January 24th about his lack of eye contact and his slightly wandering left eye. We will see if it can be managed or corrected with little baby glasses, the extent of his vision, and if the wandering eye will need surgical repair.

Gabe has his helmet fitting with an orthotist on January 7th. The same day all three boys go get the remainder of their vaccinations. We are sort of doing a delayed vaccination schedule. Trying to take it easy on the boys and not give them 5 things to fight off at once.

Ethan and Xavier are awesome as always :) all four of the boys have colds. We can't seem to kick.

I still don't have an Xmas tree up! I'm contemplating trying to fend Ethan off and putting one up today but part of me thinks it will just add more stress. I'd have to take it down in a week. Ethan trying to scale the damn thing and constantly pulling the ornaments off. I'm just going to have to do it. Xavier still believes in Santa so we have to have a tree for the gifts.


Xavier and his cousin Xander are the last two we need to buy for. We saved the big boys for this last paycheck before Xmas because the older kids get the more flipping expensive their toys get too. Like Ethan, who is almost 16mo, would be ecstatic if you wrapped him up old cereal boxes and 2 liters for Xmas. He's think "things to stack and caps to take on and off." For the cost of our family eating the food he would have hours of entertainment. Ages 6 until the age cash gifts are preferred, you have to buy the biggest baddest toy you can find so they can show it off to their friends. I blame tv commercials. It's hard for me to decide what to get him when, since we don't have cable tv, I don't know what's "in."

Anyways. Time to go nap while the boys nap.

-Ethan's new signature face is the pucker lol















































Monday, December 10, 2012

All is well in the L household. I packed up all the boys 0-3 month clothing today. At 4 months actual, 2 months adjusted, the twins are right on track with Ethan's growth charts. Gavin weighs 12lb 11oz and gabe, 12lb 5oz, as of last week. When Ethan was 8 weeks old, he weighed 12lb 10oz and wore 3-6mo clothes. :)

It was bitter sweet swapping out the smaller things for the bigger size. A preemie onsie slipped in the pile. It was astonishing to look at it next to the 3-6ml clothing they're in now, and think that those preemie onsies used to be too big for them. It also tugged at the heart strings seeing all of Ethan's old outfits now being passed down to the twins. We were in 3-6mo for a while it feels like with E. we will see how it goes with the twins.

Cloth diapering three babies is going well. I am still trying to find the right over night set up for the boys. With Ethan I've been putting him in a Good Mama fitted and a hemp insert stuffed between that and a flip cover. It seems to hold everything in. He just feels damp to the touch around the leg gussets and waist band. I wonder if putting him in the good mama, stuffing a rumparooz pocket with my hemp liner, and then velcroing him all up would work? The rumparooz has double leg gussets so I bet it would contain the wetness better. He is just such a heavy night wetter still. I am also battling a horrible ammonia smell in my wet pail. I really need to get an c-large wet bag to line it. That way I can just wash the bag when it smells.

Well we have completely cut out the bottles for Ethan. We've been bottle free for a week. He was almost there at 12 months while the twins were in the NICU, but when we came home he saw them with it and just had to have his "baba." We still have the darn paci floating around but he only gets it at nap time if he gestures for it. He puts his hand to his mouth and say "puh-puh-puh."

With Ethan we still have no words yet. He says "muh-ma" and "dada" "daaaaduh" and "daaaady" but that's about as close as we get. Our pediatrician told us not to be worried unless we have no words by our 18mo check up. He babbles constantly so Tim and aren't too worried.

Gavin is making great strides in his social development. We are starting to get smiles and small coos :) Most are unintentional and he almost seems alarmed to hear himself make noises. He is on a new hypoallergenic formula, we've completely phased out breast milk, and his crying has decreased 70%. He is still battling feeding issues though. He has trouble latching to his bottle and paci now. He has decreased muscle tone in his tongue and jaw. He also has acid reflex and mild gas. His PVL is also causing muscle stiffness in his upper body. He arches his back and looks like a fish flopping out of water when it seems like it causes him pain. The doctors and therapists aren't sure if its due to his reflex or his muscle pain from his brain injury.

I've been talking to other moms whose children have PVL. Many have told me that their children also started developing feeding issues at 4-5mo. Increasing drooling, lack of control ect. So I'm not too alarmed to see it happening to us.
We don't see the pediatric neurologist until April for our follow up.


Gabe is doing excellent. He smiles and coos at everything now. He loves his big brothers and the ceiling fan. He's been sleeping from 8p-4a and 4:30a-8a now! :) he's getting so big. He's alert and focused more throughout the day then Gav. He is starting to bat at your face and grab onto toys and your hands more. His torticollis is still fairly severe. We've been working on massage therapy to get his muscles to loosen up. His head is still primarily fixated to the right. During our pregnancy, he was a "stuck donor." In twin to twin transfusion syndrome, that means he had no measurable fluid so he was stuck under my ribs with his head to the side the last 3 months he was hanging around in there. We still need to make our appointment with the orthopedist. We have been sick both times! He has to go have his head measured with calipers to determine the degree of severity of its shape. Currently his right ear is almost 2cm more forward then his left. This can cause hearing issues as well as balance issues because it moves the way his ear canal forms, ect. Hopefully as his head reshapes over time his ears will correct as well, or a helmet can fix them.

Xavier is doing awesome! :) he is getting so smart and reading so well. He is such a good big brother to Ethan. He doesn't really pay much attention to the twins yet. He can't wait for us to get a van so we can all go places together. Our current mode of transportation seats a snug 5 with three car seats in the truck and he can't go any where with us. :/ a family of 6 with a car that seats 5 just doesn't work. He did just get a new twin size bed thanks to his aunt Laura's parents! :) He LOVES it and says its the comfiest bed EVER. gotta love a 6 year olds enthusiasm.


We just had Xmas at my moms with my grandparents. Ethan received a play iPhone as a gift and has no put it down! Him and his big brother Xavier also enjoyed playing with Ethan's new stacking blocks and Xavier's new sword and nerf guns! Ethan just ate all the darts. He's teething and getting two bottle molars and his second right center tooth so everything has been in his mouth. The twins got diapers! :) they are adorable!



Ill upload some pictures and try to update soon. We have occupational therapy tomorrow and I am going to try to find time to put up our tree for Santa :)