Each day is a new adventure

Lilypie Premature Baby tickers

Saturday, July 31, 2010

Old McDonald and BINGO

I finally figured out how to upload videos from our video camera to the blog.  I will apologize in advance for my annoying, twangy voice and singing.  In order to hear the videos you will need to scroll down to the bottom of the page and click the pause button on the playlist.

video
video
Tim got me a book about preemies and I am finally finding the time to read it. So far I have learned that Winston Churchill, Albert Einstein, Mark Twain, and Stevie Wonder were all preemies. Stevie Wonder is actually blind due to ROP (Retinopathy of Prematurity) which is what we had to drive to Plano to have the babies tested for when they first came home. This was the test that required the doctor to check the twins' eyes with a sterile paperclip. Thankfully they showed no signs of ROP.


There is a quote in this book that I have read at least 10 times because it really hits home for me. It is from Emily Perl Kingsley, a writer for Sesame Street and the mother of a child with special needs. She compared her parenting experience to being forced to take a trip to a place you never planned to visit. She stated - Parents who are going to have a baby feel like they are planning a fabulous vacation to a dreamland like Italy, she says. But if their child has a disability, they find out that their plane has landed, instead of in Italy, in Holland. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Having preemies has definitely been a trip to Holland for us, but there is no where else on this Earth we would rather be.

Tuesday, July 27, 2010

Visit With Nana and Pawpaw (great grandparents)

Help - my onesie is stuck on my head!!!
Nana and Pawpaw with Tayden, Brooklyn, and Payton
Cousin Payton
Nana and Pawpaw playing with Payton
4 generations
Family photo
The twins and daddy
The daddies with their babies
My nephew Landon and Tayden.  He has never wanted to hold the babies before, but I finally convinced him to give it a try.
My Nana, Pawpaw, and Uncle Shane came in yesterday for a short visit.  We all (except for Jamie who had to work- BOO) got together for dinner and then went back to my mom's for a little while.  We got some great pictures of the twins with Nana and Pawpaw and their cousin Payton.  I am so glad they have been able to visit a few times this summer!!!  We love you guys!

Sunday, July 25, 2010

5 Months Old

We bought this onesie in Alaska last summer, before I was even pregnant!
Daddy with the twins
Brooklyn
She was laying back relaxing the whole time
Tayden
Last week the babies were 5 months old!!!  Their reflux has improved even more and since my last posting there have been a few small episodes, but no big ones.  It broke my heart to read in the paper this week about a 17 year old mother who was caught trying to suffocate her 4 month old son who was in the hospital due to severe reflux.  Her response was, "It will make my life easier."  If only she could understand that it hurts him much more than it could ever bother her.  On the same page of the paper was the story of the mother in Irving who strangled her two children because they had autism and were not "normal."  What is this world coming to?  Tayden had his first session with the occupational therapist this week and it went very well.  She was impressed with the progress he had made since her initial evaluation the week before.  He is holding his head up much better and she gave us some more exercises and stretches to do with him.  Both babies have discovered their hands and love to put them in their mouths.  I haven't yet determined if this means that they are teething or about to start.  We went swimming tonight and the babies seemed to like it even more.  It is hilarious to look at their diapers when they get out.  They are huge and probably weigh 10 pounds on their own.  I am about to start my last full week at home before going back to work.  I had a whole list of things to get done over the summer, and I haven't accomplished any of them.  So, needless to say I will be cramming projects into each day.  We did have someone call to come and see the house and after we scrambled to clean up, they called to cancel!!!  UGH!!  Tim keeps telling me that we aren't going to buy anything else until the house sells, but then somehow we find things that the babies must have (hehe) and then realize once we buy them that we have no where to put them.  Have a great week!

Thursday, July 15, 2010

Growing and Growing

Tayden in his new boots
Brooklyn in her new boots
Tayden sleeping, holding onto Fox In Socks
New pajamas
New pajamas
Holding hands - how sweet!!!
Our hearts are rejoicing tonight for the two families we met in the NICU.  As of last week one family has all of their triplets home (born in December) and as of last night the other family has both of their twins home (born in March).  We look forward to many play dates with all of these little friends who for so long were NICU mates.  I have been enjoying every minute of my summer, and I am sad that it will come to an end in about three weeks.  The babies and I have found our groove and have developed a routine and schedule so that will make going back to work a little easier.  When I think about leaving them each day, I have extreme anxiety.  I thought I would welcome the time away from home, but there is no place on earth I would rather be.  I would love to find a work-at-home job that would give me the same insurance I get now for the twins and I, but that is almost impossible.  Tim has been approved to take 12 weeks of FMLA and will be staying at home with the twins starting August 2nd.  He will do his real estate full time during these twelve weeks and will show houses on the weekends and in the afternoons after I get home.  We are so blessed that he is able to do this and we are not having to take the babies to daycare.  I don't think I would be able to do that!!!  The babies had their follow-up with the pulmonologist last Thursday and it went really well.  The doctor wants us to continue with the Prevacid for reflux and the Flovent inhaler for their breathing.  We asked if the twins are more likely to develop asthma due to their prematurity and he said that they have a slightly greater risk.  Only time and their lung development will tell.  At this appointment Brooklyn weighed 13 lbs. 8 oz. and Tayden weighed 13 lbs. even.  He wants to see them again at the end of September and then he has recommended that they get the Synagis shot every month of RSV season.  This shot will not prevent RSV, but if they were to get it, the symptoms would be much less.  He was explaining how intense the whole Synagis process is - 1 vial costs him $1200 and the twins would each need two vials every month!!!  He stressed the importance of keeping our insurance current.  His office gives this shot to 500 patients every year - WOW!  So, at this time - NO NEW OLOGISTS!!!  We have been to the opthamologist, pulmonologist, cardiologist, and gastrointerologist, all of which were impressed with the twins health.  We realize every day how fortunate we are to have healthy babies.  God is so good!!!  ECI (Early Childhood Intervention) came back today with an Occupational Therapist to assess Tayden.  Since their first visit two weeks ago he has started cooing, smiling, and holding his head up much better.  He qualified for services based on his premature birth and stiff neck.  They suggested that the OT come by once a month to work with him at whatever stage he is at developmentally to keep him on track.   These visits will be informative for Tim and I will give us the tools to help him meet his developmental milestones.  Overall, he scored in the 2 month range, which is right on track since his adjusted age is 2 months.  The OT gave us some great exercises to do with him to help him with his neck muscles and to make tummy time more enjoyable.  Some really great news - the reflux monster is slowly being defeated at our house.  Brooklyn still spits-up some each feeding but she has not had a reflux episode in two weeks!!!  Tayden spits-up a little and has not had an episode in one week!!!  This is a huge celebration considering that  Brooklyn was having daily episodes and Tayden was having them about three times a week.  We were having to practically wear the bulb syringe as a necklace.  The babies are still sleeping through the night and both are eating rice cereal or oatmeal every day.  They love eating from a spoon and I can't wait until we can start introducing other items.  Brooklyn continues to thrive and has become quite the chatter box.  She coos constantly and looks at you like you should understand everything she says - it is so precious!!  My Aunt Sara and Uncle Dean bought them their first pair of cowboy boots and it has been so fun to try them on.  Now we just need to get them some overalls and cowboy hats and we will be all set!  They are growing up way too fast!!!