This blog is to chronicle the ups and downs of life with one medically complex toddler, one angel baby and one high risk pregnancy. This is our journey.

Sunday, September 18, 2011

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!


Saturday, September 10, 2011

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.

Saturday, September 3, 2011

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.

Monday, August 22, 2011

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!

Monday, August 15, 2011

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???

Saturday, August 6, 2011

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.

Monday, July 25, 2011

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.