Lauren's getting LONGER!

Lauren had a big week this week...she sat up On. Her. Own. for 10 seconds. It wasn't the prettiest sit but I'll take it! She also went to the peds today and got 2 vaccines which she didn't bat an eye at (hey this kid gets a shot EVERY night!) Her weight is holding steady at 23 pounds even (72%) can you believe it! Her length is almost 30 inches (60%) These are all adjusted to her due date of course! She also had a swallow study done today. They put thickened applesauce in her mouth and of course she gagged and vomited a bit...but then she EVENTUALLY did swallow some and did not aspirate! yay! We're hoping to get speech therapy on board soon but for now we're sill just going to work with tastes for now. I don't mind her having a G-tube. With all the feeding trouble we have with Alex it's nice how east it is to feed Lauren. Heck, I wish I had a G-tube...I totally would have drank beer in college..."just put it in my tube" I would have said! Here is a pic of Lauren loving on Lance...Lance seem to know not to move because they hung out like this for a good 15 mins. You will also notice in the picture Lauren has her bottom molars in....and they were tough! Her top ones are on their way and she has gum soreness :(

One big step for....ME!

Alex has been struggling with constipation and weight gain again :( We've had to stop his Miralax wean and bring him back up to 3 teaspoons a day. He went to the doctor today to make sure he wasn't sick and he was fine. We're increasing calories and making sure to feed him every 2 hours (like he's a newborn again, I know!) I am waiting for him to take his first steps any day now.

I remembered a quote I memorized years ago. "Ships are safe in the harbor...but that's not what ships are made for." We started a library class on weds mornings with other one year olds... So this means I got to see what Alex in the 5% really looks like. There were some BIG kids in this class...I wondered who was checking IDs at the door. He was only one of 2 non-walkers but he tried to pull up on many children to get in on the action. The half hour class consisted of puppets and rattles and scarves to play with. We can't wait to go next week. (As a side note we used A LOT of hand sanitizer and I made sure the kids around us were not feeling the least bit sick) Alex just enjoyed being with "small people". I will start to bring Lauren come spring.
When Alex first came home on oxygen and monitors I was very aware of having "different children". It made me angry for people to stare. Now I know these kids inside and out and I could care less about what others thought or stared at. Once spring arrives The nurse and I will take BOTH kids to library class! Lauren will love the music and the different atmosphere I can't keep them locked away forever.
Lauren went to equipment clinic last week where they fit her for a tumbleform chair (therapy chair...very expensive!), a bath seat (to fulfil my fantasy of her playing in the bathtub!) and some positioners...these will arrive in a few short MONTHS...yes about 4 Months! Urgh! But we're lucky to get anything at all! We've also have been waiting for Lauren's new trachs to come in. SHe has a very custom length on her trach to keep the collapse to a minimum... in the past 2 months we've been sent 4 WRONG size trachs (these cost about $1,000 each) I thought her shipment was going to come last week but again they made 3 wrong sized trachs but this time they caught the mistake before actually shipping them. Lauren is also now officially changed over to "big girl" food. (ie Neutrin Jr. ) and she's doing great with her change AND her increase in extra water. Just to give you some idea...Lauren takes in 500 calories a day...Alex takes in 1,000 and we need to INCREASE that! I look forward to her swallow study next week!

The pic posted was because Alex always wants to get to "nurse Mary's" glasses so we finally put them on him...How funny! The other picture is just my own personal advertisement for "breathable bumpers"

Happy Lauren!

Just a month ago I would put Lauren in her exersaucer and she would just sit there slumped over. I'm amazed by her progress and LOVE that she LOVES it now! I just wanted you to enjoy!

survivor

I found this video of an abortion survivor. As I watched it, Alex was pushing his cart across the living room and Lauren smiles with her toys. It makes me think of the time when we got the choice to end Lauren's life. I was hysterical driving home from Riley. I do most of my good crying in the car. I talked to my sister about ending Lauren's suffering. Ending the pain. Ending her life. What kind of life would she have? I will never forget her next words. She said "God doesn't make mistakes. This is not an accident. You don't want to miss out on God's plans for you and Lauren. Don't miss it." The more I grow to know Lauren the less I see her equipment. The more I would have missed out on meeting "happy Lauren". So glad I'm not missing a single second. Please follow this link... http://vimeo.com/12261423

Alex gets a story!

I come from a family of storytellers. When we get together there is story after story being told. I have many, many stories of my life and childhood. My father lives in his stories. Alex got another story last weekend! Last weekend my brother from Chicago and two of his children were in town. Six of us(my brother his 2 kids, Alex and 2 Miller boys) went to breakfast at Dennys. ALex was up in a high chair and playing with my eggs. I figure, if the kid is interested in food in any way I will let his explore it...so HE put some egg in his mouth and them preceded to vomit ALL over. All over me, him, the table. You name it. My brother stated screaming and throwing piles and piles of napkins at me. The other children were all over the restaurant hiding from the vomit. Needless to say, Alex and I had to leave early :( My brother ended up paying the bills of all the customers around us because it was so gross! This will be a story we tell for YEARS to come. Lauren is also feeling MUCH better now that she is home. she's smiling more and LOVES when her cousin Bryan comes to visit. I figured I'd post some pics and video since it's been a while!

The "H" word.

I've been without Internet for a whole week...I was all ready to write another fantastic post about how well the twins have been doing...UNTIL Lauren got sick and went back to the PICU :(
But let me start at the beginning...
She went to her developmental Dr. last Thursday and she thought she looked great. We changed her off baby formula (well not yet, we haven't got it in yet, but we have it ordered) to nutrin Jr. (big girl stuff!) The NP thought her muscle tone looked great and we've started a Valium wean. We also have appointments set up to do a swallow study (finally!) and to go to equipment clinic to get some fun new chairs and bath seats. THEN 2 days ago she started to get more and more fussy. Old Lauren was starting to come back :( We've needed to suction her more and more. She started having more and more trouble breathing. After giving her as many extra breathing treatments and we could the vent doctor told us to go on in the the ER. After much drama, and a ambulance ride we were rushed upstairs to the PICU (Clairian North, of course!) She tested negative for RSV and the flu. They could not get blood on her so no cultures or anything observed. SHe finally started to turn the corner after 4 hours of continuous albuterol. they kept her 2 nights. She was significantly better within 12 hours and smiling again :) They started steroids and strong antibiotics. As I type now Nick is bringing her home with our nurse as I wait with Alex. Prayers for a HEALTHY winter!

Happy New Year!

This has been a BIG year for the twins...this is how far they have come: (and rememebr this time last year they were still in the hospital!)
Just for fun this is what I posted last year on each baby!

Alex:

Tuesday Jan 5, 2010

Alex got his vapotherm turned back up today at 4 liters. He was up on his oxygen and had some reflux. His current weight is 5 pounds 12oz

And what a big year it's been for him! He's come off oxygen and avoided a g-tube! He's developmentally right where he should be! today he had a peds appt and she was THRILLED with him! His weight is up only 3oz in the last 3 weeks to 19# 5oz. (5%) but he's still gaining and tracking with the curve. We're going to increase his calories even more. His length is 30.5 inches (65%) So at least he's growing LONGER.

Lauren:

Tuesday January 5, 2010

Lauren is doing great on the vent. Her current blood gas is exactly where they want it to be. Her current weight is 6 pounds 15oz...and she looks BIG. They have decreased her calorie intake because she has been gaining weight so well!

If only I could scream back at the "me" who wrote that to say "decrease her calories more!" SHe's getting her vent settings weaned every month. She's pretty good with her head loves to bounce. Mostly importantly she is very smiley :) PT was thrilled with her progress today. She's putting more and more weight though her hands.
I hate to write goals for next year because we all know how well my plans work out :) But for 2011 I'd like to see Lauren go to trach collar during the day. I'd like to see Alex walk. ( I say this now but then the will run FAST :/ ) It has been a blessing in disguise that Lauren cannot crawl yet. Could you even imagine trying to keep up with her with the 5 feet of tubing we get? Ha!
Here's to 2011...hopefully there are BIG changes ahead :)