Chicago cousins come to visit!

My brother and his three kids came to visit from Chicago! Alex loves girl cousins too!

Christmas time!

Alex's cough is gone...the change in meds did the trick! It's so nice to not hear him cough cough cough at night. This past weekend we went on a train ride with two of Alex's favorite girlfriends. Grown ups could cram themselves into the train cars too, so that is what Alex insisted that I do! He has been in much better spirits and finally started sleeping really well for me again. That's all I wanted for Christmas!

cough, cough, cough

Alex's chronic cough is driving me crazy! He has been on 4 rounds of steroids, 3 rounds of antibiotics and numerous trips to the doctor since September. Since the end of august he hasn't had a cough for 3 weeks. I can live with the chronic cough....it's when he starts having a bad cough at night I start to worry. This past Tuesday night he coughed every 2-3 minutes for 4 hours. Yes, 4 hours. I did breathing treatments and pulse ox check at 3 am which did nothing more than wake him up for party time for the next two hours! We saw his lung doctor on Friday who changed not only his inhaled steroid but the method we were giving it in. We were doing blow-by pulmacort and now we're doing 2 puffs (with a spacer) of Flowvent. This medthod is much quicker but MUCH more horrific for Alex as we need to press the spacer against his nose and mouth until he takes 10 breaths...usually 10 screaming breaths.

The pictures are of Alex working hard on Playdoh at his new kids table and with his new haircut...no one told me boys need their haircut once a month!

Who told Alex he was 2 !?!??!

Alex has developed another cough :( So he went on another steroid burst for 5 days. During these steroid treatments Alex gets crabby and clingy! He's so wound up he's hard to put to bed or nap. He won't let anyone but me hold him. I actually had to leave a physical therapy session because he wouldn't let out PT come near him. We did go to Christmas at the Zoo. He loved all the lights but was still very clingy. The pic is where he realized I wasn't holding him...He also constantly has suckers stuck to him so his "boy cousin" was picking one off! Alex has also started throwing little fits if he does not get what he wants...hope he didn't pick this one up from me!

Center. of. Attention.

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I don't think I've ever blogged about how Alex loves to be the center of attention! We've been to 2 outdoor concerts where Alex was the only one out of at least 100 people who is on the dance floor dancing! In retrospect, I should have gotten video or at least a pic but I thought the whole thing was so hysterical that by the time that I thought of it the moment had passed. He loves the attention of adults and other children. This past weekend we went to a festival where Alex got two balloons. One, he released to his sister. The other, he insisted on holding that actual balloon in his hands!

Guess who loves suckers??!?!?!

Alex has finally realized suckers taste good! After 4 Halloween events and tons of candy he won't eat, at least this year he has discovered the sucker! Alex still refused to put on his monster costume( it was adorable, "boo" from Monsters, INC) So we used the backup pumpkin costume. Boo! Alex went trick-or-treating with his BFF!

Alexander and the terrible, horrible, no good, very bad week!

Alex didn't poop for 2 whole days...and when this happens the vomiting begins! He vomited up most feeds since Tuesday night. Despite my best efforts to clean him out, we ended up at the peds office on Friday afternoon with a X-ray to show us just how much poop he was full of! He FINALLY started pooping on Saturday and never stopped. Thank goodness. He now hasn't vomited in the past 24 hours but we are still not back up to his full feed volume...he was doing SO well before this! SO this week has been full of vomiting, waking up at night and finally diarrhea. Of course there was laundry, laundry and more laundry. I think we've seen the worst of it!

Alex's cough if FINALLY gone!

After a month of coughing, 2 rounds of antibiotics and 17 days on steroids Alex is finally better! Yay! Thanks for all the prayers!
I have kept my stethoscope at home instead of work for the past few years. The other day Alex walked in the room and was wearing my stethoscope around his neck....just like his mommy does! It was so funny that I had to take a pic!
I was also going to post a pic from when Alex went to ZooBoo but he refused to put on his costume...so he went as himself...hopefully we'll have more luck this weekend because we have a Halloween event to go to every night!
In further news in the past month I have started working 2 days a week. I go into work only on Tuesdays and Thursdays and spend the rest of the time with Alex. This makes me feel like a stay-at-home mom who gets to go see her friends and use her mind 2 days a week and Alex gets to be with his BFF on those days. I get to spend most of my time with Alex but still get full benefits. Perfect.

It's fun to go camping!

Alex went camping all day on Saturday with his boy cousins and lots of other children! He LOVED being outside for 12 hours straight! There was hiking, riding bikes and lots and lots of leaf throwing! Last year when we put Alex in a leaf pile he cried...he now LOVES it! No sensory issues for us!

2nd Annual Stucky's Farm with boy cousins!

I've blogged over and over again about how much Alex loves his boy cousins. We went to the pumpkin patch for the 2nd year with them and Alex had a blast! Last year we were all freezing and Alex was in a front carrier riding with me...This year we were all in shorts and t-shirts and Alex got to run around like crazy!

P.S. Alex got his haircut today by a *real* barber! His hair was out of control! Alex sat still inthe chair for over 15mins being a very good boy. Pics to follow in the next post!

And Alex is sick again,,,

I figured I'd better update my blog or lose my audience! Alex has been sick again for the past 2 weeks. AT this point he is almost over it with only a snotty nose and a few coughs remain. In the past 2 months he has been on steroids for 17 days. This means there has been very little growth. I'm hoping to get a few good months of him off steroids for him to continue to grow! He still eats very little by mouth. Maybe 50 calories a day. We have started bolus feeding him in the past few weeks . Now, instead of his feeds taking 45mins they take 5! This also means that Alex does not have to sit in his highchair for all that time. All the by wants to do is be on the go! Alex went to his first friend's birthday party last weekend. We went to the mall to "build a bear" but he was WAY more interested in pushing a trash can around the mall! He loves to drag and push things across the floor. I was thinking about getting him a child's size toy stroller but it seems too feminine. None of the boy equivalents are very sturdy (ie lawn mower etc) Prayers needed for Alex to stop getting sick and start GROWING again!

Birthday Pickle!

Happy 2nd Birthday! Alex had a great 2nd birthday! He had a party with some friends and family. He does not like to eat anything sweet so he wasn't very interested in his cake...but his pickle he liked a lot!

I love you the purplest.

I love you the purplest is a children's book my sister always gives moms when they have their second child. It's simply a story about two boys who ask their mom who she loves more. Her response is clever. She states she loves one the purplest and one the bluest.
I wouldn't really understand this story unless I had two children. I love both Lauren and Alex equally and yet very differently.
I was talking with my mother the other day on the phone when she overheard Alex being crabby. She then responded "remember how darn happy Lauren was?". I've blogged about Lauren's happiness over and over but I don't think people really believe it unless they got a chance to experience it. The upcoming week is going to be really hard for me. It's going to be hard to celebrate Alex's birthday when it is also a reminder that Lauren should be there too. Someone is missing. I was thinking of having Alex do a balloon release for Lauren every year on their birthday. Something so commemorate the fact that it is Lauren's birthday too.

I had a dream a few weeks ago that was incredibly vivid. I saw Lauren in heaven. She was perfect. Beautiful and chubby and happy. So happy. Then the thought came into my head "HE makes all things new". I actually looked this up when I woke up and found it in the book of Revelation in the bible. I then preceded to sing to her. Lauren always loved to be sung to. I sang "Puff the magic dragon" which was one my own mother sung to me when I was little and I've sang thousands of times to the twins. I will always love Lauren the purplest.

Caught up by 2?!?!

There is a notion that premature babies should be developmentally "caught up with their peers by 2". In fact, as of the seconds birthday no one adjusts their age any more. In all of the therapies they will see Alex as actually 2 as opposed to 21 months. The pediatrician will use the chart as if Alex was a term baby meant to be born in September and not December. I, however, will continue to adjust his age in my head. I don't know if this will ever change for me. Will he be 18 but I won't think of him as voting until that December. Or 21 and not drinking legally until Almost Christmas?
This idea was put into place in a time when 26 weekers were not surviving. When the viability age was 28 weeks. In fact, in the last 10 years since I've been "in the business" I've seen the viability age drop from 24 to 23 weeks. Now that these "micropreemies" are surviving, most, if not all of them are not caught up by 2. My hope is that Alex is caught up by kindergarden.
This also brings up a point which I've never blogged about. I'm a nurse practitioner. I have A LOT of medical knowledge. I have also learned A LOT over the past 2 years. Never once in all the times either myself or one of the twins has been in the hospital have I ever mentioned this. But each time, yes every single time, all of the staff knew I was an NP. This is both my greatest blessing and my greatest curse. It's a blessing that I do know what's going on. I am an active participant in care. It is a curse I know what comes next. It's a curse I KNEW we would not get out of a 26 week pregnancy with 2 healthy babies. It's a curse that I know what it means when Lauren went back on the vent In Jan of 2010...that she wasn't coming off anytime soon.

Alex is getting assessed by his therapists to see how he does....here's what we have so far:
PT (gross motor)- Alex has caught up to his adjusted age but when he turns 2 he will be behind...we are wotking on jumping from an open floor and going up and down stars standing up.
Speech- What he can say he is at a 12 month level. What he can understand he has caught up to his adjusted age...so obviously when he turns 2 he will again be behind in that category.

Alex is sick :(

Alex is sick again. He's had a few fevers and some vomiting over the weekend which put us at a med check on Sunday night. He is now on a z pac and steroids and doing much better! Just a pic with Alex and one of his "boy cousins" he loves so much (it's from a few weeks ago...not when he's sick) ...he LOVES to ride on the golf cart!

Ready? Set....Go!

Alex's first official word is "go!". He actually said it a few weeks ago but I have yet to blog about it. He has said other words but nothing consistently. His vocabulary that he understands is HUGE. He is now completing 3 step tasks..."go to the kitchen, get a pen and bring it back". He amazes me more and more everyday! He has started doing puzzles well and also learned how to turn on my very expensive washer and dryer....how long will they last???

Waves of grief.

I've always known that grief comes in waves. It comes in the wave of walking though the girls section of clothing and knowing there is no point in looking. It's coming in seeing a double stroller with a set twins. I feel it in the instant the oven buzzer goes off and just for a second I think it's Lauren's alarms before I reorient myself. Time is the greatest healer of all. I just need more time.

Lake House 2011

We go out to my brother's lake house every year. This was Alex's first trip. My 5 year-old nephew was quoted as saying this weekend "was the most fun he's ever had in his entire life. Better than Disney." There was swimming, boating, fishing etc etc etc. The kids even caught a turtle! All of Alex's cousins were there! He had such a good time with his cousin Abby who is only a few months older.

out takes.

I got the CD in the mail today with all "the rest" of the pics from our photo shoot done about 6 weeks ago now. There was picture after picture of both twins looking adorably and looking as awkward as an out take can get. The I came across this picture and cried. You see, my original idea was for me not to be in ANY of the pictures..this was a photo shoot for the twins. This photographer (who is AMAZING BTW) was just taking pictures on the fly. This particular picture was taken at random. She caught a moment that I frequently had with Lauren. I would sniff her head. Weird, I know. It was just me, soaking up Lauren.

This post is to show how stinking cute Alex is!

I just love him!

Alex gets older...quickly!

Alex got his fourth (or is it fifth?) haircut last weekend and seemed to age an entire year. He's losing his "baby look" fast. He's starting to eat more but the process is slow. For the past month while I work he's been at "his best friend's house". This is a little boy who is exactly Alex's adjusted age so they play together and he shows Alex how to eat. In fact, He even taught Alex the sign for "please". Apparently, these two boys speak the same language and Alex just learned he get get anything by using the sign for "please". They chase each other around the house and when his friend's parents are brave enough they take him to the zoo or the library. (I've been told having the both of them in public is like "herding cats".) They have baby chicks at their house and a piano! There is NOTHING Alex loves more than a piano! The parents are both teachers and just really great people so the more exposure to them, the better. Overall it's a great way for Alex to get exposure to other children (which he needs) without getting sick (which he doesn't need).

We meet with a nutritionist every 2 weeks for the past few months. Every time we do Alex's wight, length and head measurements. Last time he was tipping 24 pounds (this means he's gained a pound every month since his G-tube!). We've decided to cut back on his feeds and calories to make him hungrier and more likely to eat by mouth. We do 3 feeds a day, and now he's awake for all 3. We've added back an ounce to each feed as to not decrease his calories too much. He seems to be doing great with it and starting eating a bit more. His new thing is to eat and drink while in the car...this makes for a MILLION Kixs all over my car!

Missing Lauren.

I missed Lauren a lot this weekend. REALLY missed her. She was so happy and gave me so much more than I ever could have given her. People write things like that all the time. Two years ago I would have thought "that's just crap that people say to make themselves feel better". I was wrong. It's actually true.

There's a man who does the Ironman triathlon out in Hawaii every year with his disabled son in tow. A son who he pulls swimming, biking and of course running. Their name is "Team Hoyt" if you'd like to look them up. Year after year I've watched him and heard his story. The questions were always the same. "Wouldn't it be easier to do this enormous physical task without pulling your son?"His answer was always the same. "I couldn't do this without my son". While I always thought this was a nice sentiment, i never really understood it. I do now.

Since Lauren's death if anyone, even for a brief moment, thought I was better off, they didn't know Lauren. If anyone thought, "well now she can lead a normal life again". They didn't know Lauren. They may have met her and even held her a time or two. Or, they may just follow this blog. I cannot describe what a joyful, happy baby Lauren was. I cannot describe the joy it gave me to see her sit up for the first time on her own. Or search for her paci for the first time. Or laugh SO hard at her cousins that her face turned beet red and she would trigger the vent. Pure. Joy. I'm in no way better off without her. If you never got a chance to know Lauren, the loss is all yours.

Miles to go before I sleep....

I haven't posted in what seems like forever. I've been waiting until I felt like I wrap my head around a post without an update on Lauren. At what point will this get easier? At what point will I stop referring to "the twins" or "children" or even "kids". I bet it will be at the same point after my dad died when I stopped referring to my"parents" and starting just saying "my mom".

We live in a culture where we don't talk about death. It is more taboo to talk about death than it is about money, weight or even sex. We are all fooling ourselves because the very truth of it is that no one gets out of this alive. SO why are we not talking about it? What makes us so uncomfortable? We are there not more of us buying our plots and making out our wills? Where does this fear come from. It is very counter-culture to say but the day my father died was the day I no longer feared death. You see, death was never the worst case scenario for Lauren. Don't get me wrong, I would sell both of my kidneys for one more day at the zoo with her. She was pure joy and taught me what giving it my all really looks like. Lauren strengthened my faith in God. All those nights awake giving breathing treatments and at some points doing CPR, it was not me saving Lauren, but her saving me. I usually save this kind of talk for my now-hidden blog but I feel more urgency than before. I believe is was C.S. Lewis who said that God whispers in our joy and screams in our pain. I've been getting screamed at for the past two years. Believe me when I tell you, there is spiritual warfare going on. I can feel it. Whose side are you on? God doesn't make mistakes. I know one thing for sure: I was not meant to live an ordinary life.

Alex is sick :( He has a double ear infection and his lungs are wheezing. He's a little crabby but overall doing well so far. We have started antibiotics and steroids and upped his breathing treatments to every 4 hours. He is now walking 99.9% of the time and is coming close to 24 pounds.
The twins and I did a professional photo shoot the last weekend Lauren was alive. What a treasure these pictures are!!

Lauren's Eulogy

There’s a bible story I’ve grown up with but never really paid attention to until I met Lauren. It’s the story where Jesus heals the blind man.

In the book of John:

As he passed by, he saw a man blind from birth. 2And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” 3Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.

The works of God were displayed in Lauren. I saw God daily as she bloomed. I feel so blessed that I got to be her mother and see her develop into the sunshiny baby she was.

PAUSE

Things most people did not know about Lauren:

1) she was born “in caul” which means she was brought out of my stomach still inside her bag of water. In some cultures this is a sign of good Luck.

2) Lauren was always measuring smaller on ultrasound than Alex. Lauren is the reason the babies were monitored so closely and delivered because of the great amount of distress they were both in. It is this reason I believe Lauren, in fact, had saved Alex’s life.

3) Lauren and Alex had their first fight last week. Lauren was playing with the long stick( which by the way is the prized toy in the house even though it looks like toysrus exploded) and alex jerked it out of her hands at which point Lauren threw a fit. I had to laugh because that seemed so normal.

4) Lauren loved to be tipped upside down.

5) Lauren loved music. Especially music that was sung to her.

6) Lauren would frequently put the whole pacifier in her mouth.

7) Lauren loved her head rubbed.

8) Alex would see us doing chest PT pn Lauren which involves hitting her back and sides so his most frequent interaction with her would be to pat her as well.

9) Lauren and Alex and I would have story time every night at 6pm. I would read the touch and feel books where Alex would touch a page and then reach over for Lauren hand so she would feel it too.

10) Lauren was a much happier baby than Alex. Lauren rarely fussed.

PAUSE

This past memorial day weekend I had the best weekend with Lauren. During the 3 day weekend I had only one nursing shift of coverage. During this 3 days I was with her 24/7. We went to the zoo where she loved the penguins and the splash park. in the I also took her to the splash park on Memorial day where she stood in the water for over 10 m ins laughing hysterically at the kids squealing around her. I finally took the twins on walks with their double stroller. Usually I would go right to be when Lauren’s nurse arrived and Lauren would stay up to play. This past weekend, I put her to bed each of her last 3 nights. It was a magical weekend for me.

PAUSE

People:

Lauren had many special people in her life who I would like to thank for being such a big part. These are amazing women who loved Lauren as much as I did. They were in this with me.

Marie-Marie was with Lauren 5 days a week. She would frequently come in early and stayed late just to be with her. I would call Marie Lauren’s “other mother”. Marie would get just as excited as I would when she learned to sit up or got to eat or started trach trials. Marie took great joy in picking out her clothes every morning. Marie was in this for Lauren.

Carla- Lauren would light up when she heard Carla’s voice. In fact just last week Carla came in at midnight and Lauren was sound asleep. When Lauren heard Carla’s voice she sprang to life and would not go back to sleep until Carla gave her enough attention. In fact, this was one of the rare temper tantrums Lauren had. She wanted Carla to Play even though it was 2am!

Mary- Mary was the nurse who had Lauren during her first night home. Mary was the nurse who started playing “horsie” with Lauren. Lauren would see Mary and just start throwing her body back to “just start the horse” to make sure Mary would play.

I feel sad for all the things I’m losing out on by Lauren’s death. I wanted more than anything to hear her laugh. I’m comforted by the fact she’s laughing now.

My father passed away about 11 years ago. He was the best dad a girl could have had. I know for a fact my father was saved and he was there to meet her. He is giving her the horsie rides and tipping her upside down. She is happy. And I can’t hardly wait to see her again. One day I will understand why Lauren was taken from me so soon. Until that time I will trust that God’s timing is perfect.

The blog continues?

I've been struggeling with if I should continue this blog or not. I made this blog for Lauren. I made it because she had more ups and downs and I wanted friends and family to follow along. I still can't believe she's gone. I can't believe how quite this house is. Alex and I now spend very little time in the back of the house. It screams "Lauren's not here!" I've finally organized most of her things, equipment and supplies sending most of it with medical teams to other countries. I'm not quite sure now what to do with my life. My whole existence for the past almost 2 years was taking are of Lauren. I was ready for the marathon. I was in this. I was excited to barely work and be a mom to twins. I just don't understand why God would take her from me now. I don't think I'll ever understand. I do have a peace about it though. It makes me happy that she is with my dad. They are sitting on the back porch of heaven talking for hours. He is teaching her things and throwing her in the air. He was the greatest dad to a little girl. She deserves that. Alex is the easier child to take care of medically. Perhaps it's all a matter of perspective. My perspective has totally changed. It's like most people cannot imagine running 10 miles but in marathon training that was my short run. That was relaxtion and a recovery day. Alex is my short run. I cannot imagine how easy a full term baby would be for me...You mean the baby just eats? You don't have to put any monitors on? there's no medications? There's no trouble shooting machines?
I do have a heart for special needs children and maybe that is where all of this is leading me...

To a very special little girl...and one of my greatest blessings.

service

Grave side service for Lauren at zionsville cemetery this Sat at 10am. Lunch and continued memorial at my home to follow.

twinless twin.

We lost Lauren today. It was very sudden. She's able to giggle out loud now.
We're working on a service for this weekend. Details to follow...

What we did with our 2 hours!

Lauren is up to 2 hours off her vent 2x a day! Freedom!
Yesterday we went to the zoo. I meant to get pics but my camera card was full :( Alex was most interested in the lady emptying trash and the guy blowing leaves. Lauren really liked the penguins. Today with our 2 hours we went to the splash park. My sister and her boys went with us. Alex did not stop holding his cousin Bryan's hand the whole time. Lauren STOOD in the water for about 5 mins! This is huge! She loved to have her feet in the water AND she is really starting to hold her own weight. There were a million kids at the splash park. Lauren attracted all kinds of attention from children but repelled adults. She laughed and laughed at the shreaking children. We can't wait to go again!

Feels like twins!

I've always wanted to be a twin. To have someone my age to grow up with and play with...so what's the next best thing? Having twins of course. I couldn't have been more excited when I found out I was having twins. As I'm sure we all know by now my pregnancy didn't turn out as planned. It never felt like I had twins. Lauren came home from the hospital 5 months after Alex. She's developmentally half his age. She is now off the vent 1.5 hours twice a day. I have finally figured out how to take then both on a walk by myself. Lauren still has oxygen and suction and an emergency bag I need to take but without the vent it is a whole lot less tricky. Today, in their double umbrella stroller I finally felt like I had twins...and that feeling has been a long time coming...

How could you not love this face??

Lauren has been so happy this past week. She had vent clinic on Thursday during which she had a really heard time breathing but they ran some Albuterol and she was fine. Current weight :22 pounds 2oz. We may need to increase her calories some more. She is doing so much more work of breathing on her own. We are up to 1 hour 15 mins off the vent 2x a day. She also saw the feeding clinic this past week. We are starting a teaspoon of food a day which she takes ok. I'm luck I have a nurse who loves to cook and is very excited to feed her! Speech therapy is also going to start once a week. What can a kid who can't talk learn in speech? communication. Sign. pointing. etc etc.
Alex is doing great. He learned to stand up from an open floor today! He walks now 75% of the time. He babbles all the time and said "bubbles" today but I couldnt' get him to say it again. Does that count?The eating front is another story. He hardly eats anything. and I mean maybe a bit or two of somthing and some cheese puffs. boo.
Thanks for following!

What is normal?

Lauren is much better since her stay at the hospital.
She went to see her neurologist this past week. Nuro was THRILLED with how she looks. Plan is to get her off her seizure
medication. First she needs a 24 EEG at the hospital to prove she's not currently not having any seizure activity. Then we will being the weaning process!

Happy Mother's day!

Some of my nurses made this a special mother's day for me by having the twins makes some frames for me...it always surprises me how much bigger Alex's feet are than Lauren's. Lauren's been home for 24 hours now and doing well. It makes me feel better to see her heart rate under 100 when she is asleep. All the mother's day gifts I need! The second pic is when Alex crawled under Lauren's table to play "with" her!

HOME tomorrow!

I didn't get my fantasy of Lauren coming home today. They wanted to watch her one more night. So, tomorrow it is! I had a mom say to me today "well at ;east you got a good break". Huh? It's horrible when she goes into the PICU. I feel constant guilt if she's ever alone there. Plus, Lauren's not a burden to me. I love having her here. I love seeing her face light up. I love having her bounce repeatedly on my lap wanting me to tip her upside down. I don't feel complete when she's not home. the hospital pokes at my PTSD. Home is where she belongs.

PICU day #4

Lauren did not get another fever today. She's back to being more active again, too. She does have some trachitis the question is if she is septic or not. As of right now, nothing is growing from her blood cultures. If something grows she will need 10 days of IV abx. That's when they will talk about putting a central line in :( If not, I hope to be home with inhaled and oral abx by Friday afternoon. A girl can dream, can't she?

PICU day #3

Lauren got a FEVER today of 102. She's never had a fever in her whole life. We're also getting all kinds of thick/yellow/tan junk from her trach. She has since been started on IV abx and steroids along with inhaled Tob. Boo. I planned to have her home today but I think we all know by now my plans never work out...looks like we'll be at least 2 more days in...if not a lot longer. It all depends on what her cultures show in the next 48 hours...

Let my Lauren go...

After a FANTASTIC day on Saturday, Lauren went back to the PICU on Sunday. On Sat She spent the whole hour off the vent at the zoo. (no, she did not touch anything). Sunday She spent the whole day on continuous Albuterol. Saturday she spent a whole hour outside in the fresh air. Sunday she took an ambulance ride. Saturday we got her to weight bear and STAND on her feet! Sunday her heart rate was hitting 200.
They don't quite know if she's sick or just having lung troubles from the weather. She on a short course of steroids and as of yet no antibiotics are started.
As it sits now the doc wants her to be able to tolerate (ie no wheezing) every 4 hour ALbuterol. Right now, she's on every 3 hours. Prayers for a good night overnight because I can't wait to get her home. It's too quiet here. I wondered what that noise was last night...I was hearing the clock in the the family room...I had NO IDEA it made noise. Here's to a SAFE and HEALTHY homecoming tomorrow!

Finally!!

Alex is BIGGER than Lauren!!! by 2 whole ounces! yay! I never thought this day would come!

What a difference a year makes!

This link was a video that was taken on this date last year...when we thought Lauren looked SO much better... now look how far she's come!
She saw endo today and her thyroid level is right where it should be. Her current weight...22pounds 11oz. She was also fitted with AFOs this week to help her stand more. SHe is currently off the vent 45 mins 2x a day and we'll go up to a WHOLE hour on Thursday!

Lauren in April - Nicholas S. Key

The HOPE that Easter brings!

One of Lauren's great nurses MADE this hat for her!



Holidays are strange when kids are little and don't really know what's going on. I took Alex to two Easter egg hunts. We saw the Easter bunny. I'm too paranoid to let Alex actually touch the Easter bunny. I like to call him the "RSV bunny". The best part for Alex was to be around all the other children. He loved to children all running around him. We got a few eggs which were all full of hard candy that kids his age would choke on :( Not that Alex wants to put anything in his mouth anyways. Just a few pick of the twins Easter! Oh, and the top pic is where I noticed that Lauren has my EXACT hair coming in!

Grandma comes to visit!

My mom makes the trip from sunny Florida to Indy about every3-4 months. She got to see HUGE changes since she was here over Thanksgiving...Alex walking Lauren sitting up. She even faced the cold wind last Saturday to watch Alex in his first Easter egg hunt!

Blessed.

I can remember about 9 months ago we had a meeting with all the people taking care of Lauren when she was getting ready to come home from the hospital. Everyone was there: PT, OT Vent doctor and her nurse, the nursing agency, social work etc, etc. We told them then that we had gotten in the wrong supplies for Lauren. We got in a part for her for when she was off the vent, not one for the ventilator. I remember the nurse saying "just keep it for when she's off the vent in the future". At that point, it seemed that was as far off as retirement. It seemed like we'd never get there. That was also a day where we discussed the "grim outlook" on Lauren. It was that day where they stated we might "see her die in front of us". It was that day we signed her DNR order.
She's come a LONG way from that day.
Last week We. Started. trach. trials.! This is where she's off the vent (but still on oxygen) so she does all the breathing on her own. We're starting at 15 mins twice a day and get to increase that by 15 mins every 5 days. We tore up that DNR order.
Lauren went upstairs for the first time. She's gone on her swing. She's a happy baby.
Lauren also had a appointment with a head doctor to look at her odd head shape. He said it was fine and should not cause brain problems in the future.
Lauren has also started taking more by mouth...in fact, she likes it WAY more than her brother does!