Friday, May 22, 2009

Yay for great-grandparents and other updates

This past week my grandparents made the long trek from Chattanooga to St. Louis again. It has been so wonderful to have them visit several times now. My grandfather, who is an amazing man in so many ways, made our yard the envy of the neighborhood (before it was definitely the not the prettiest- yard work has been pretty low on the priority list) and got to spend lots of quality time with the girls. My grandmother, a super amazing woman, cooked, cleaned, and helped me with the babies so much. It was WONDERFUL!!!!!!!!! They took Emma Jane and Parker out on the porch and sat with them almost everyday and the girls LOVED it. Jason and I were even able to sneak away for an hour and get some ice cream one afternoon.

Pawpaw and Emma Jane enjoying some porch time

Granny and Parker doing Parker's favorite thing- smiling.










On an unrelated note, Emma Jane rolled/ scooted herself under the couch last week. She stayed there for a good five minutes trying to figure out how to get back out and then she got a teensy annoyed.
And to be equal here are some pictures of Parker enjoying her bathtime duck. Emma Jane likes the duck but Parker loveeeeees the duck.

For those of you curious to know how big the girls are, they are a little over 12 pounds now and about 24 inches long. Emma Jane weighs a little more than Parker, but Parker is longer than Emma Jane making her look even more skinny. We have just now graduated to wearing 3-6 months size clothes, some of which are still too big. They are both beginning to teeth with Parker being the first to have a little bit of a tooth break through. But both have all the signs of impending teeth- drooling, biting EVERYTHING, etc. As Jason eluded to in his last post, eating is still a struggle. For the first few months home, I held out hope that it would get better as did the pediatricians and dietitian. Now we aren't so sure. People have stopped saying, it will get easier in a few months and have now changed their tune to "It will get better when they don't need bottles/ formula anymore". Everyday is a struggle and the girls will unfortunately need some type of breast milk/formula until they are close to an adjusted year old which means close to December. Just thinking about this makes Jason and I want to cry a little, but it is what is best... at least that is what they tell us. We can't live this way forever with this much of a struggle to eat and pray that God will show the girls (and therefore us) mercy sooner rather than later and make them HUNGRY. We are encouraged though that at least they like solid food and hope we can cram it into them and do away with bottles as soon as humanly possible.

But the girls are on track developmentally for their adjusted age. Emma Jane stays consistently ahead of Parker but both are meeting their milestones. Both can roll over from front to back and Emma Jane is very close to mastering back to front. They are working on sitting up on their own, although neither one are currently the biggest fans of it at the current time.

So we have a lot to be thankful for which at least for me is hard to remember some times. I get so caught up in their weight gain and refusal to eat, I become very discouraged and angry. All I have ever wanted is for the girls to be "normal", I think that is what most parents want, but instead life seems to be anything but typical. I compare them to other children who were born full term and are their same age and become even more in the depths of despair. And just when I think I can't take it anymore, I go to work and get a big slap in the face with reality. In my job, on my floor, children die- sometimes my floor can go months without this and sometimes it seems like there is one everyday. It is my job to be a part of the team that saves this child's life and when things don't go as planned it is my job to be with these parents during the worst possible moment of their life. The first few weeks the girls were in the NICU I sat in the room in breath taking fear that I would be one of those parents knowing exactly what would happen if things took a turn for the worst. Praise God they didn't for us, but there are other families that aren't so fortunate. Yesterday I worked right next the child in the bedspace over from my patients died. It was, as always, horribly sad and now these parents who wanted to go home with their baby, instead go home with broken hearts.


And it is those moments, I remember that my children are alive. They may be very small, hate to eat, and may never actually be on a growth chart, but they are alive, happy a good portion of the time, and really really adorable. The first time I actually ever felt the girls move was when I was at work and helping put a dying child into the arms of her mother one last time. It was a very surreal moment as I watched one life slip away and felt two others just beginning. So last night I came home to two crying babies (who had been crying for Jason for about two hours...) and I looked at their red puffy faces and smiled and held them and was thankful.

5 comments:

The Byrges said...

Love It!

Shannon said...
This comment has been removed by the author.
Shannon said...

Mary Jane and Jason,

I sit here at my desk with tears running down my cheeks. I have said over and over again that your girls are miracles and I still believe that today. I look over at their pictures on my book shelf of when they were pees in a pod for Halloween and their birth announcement. I think to our visit from two weeks ago. I have seen them basically weekly since they have come home. As an outsider who sees them all the time, they are amazing!! (I know you already know that) THEY ARE HUGE!! Ok, 7 months until December but sippy cups soon?? I love you all so much. I support you. CALL ME!!! Check your email and look at dates...

Shannon

P.S. I deleted my last post b/c I cannot have misspellings and be a graduate student, goodness gracious!!

Cindi Burger Barrett said...

Mary Jane-Thank you for sharing all of this-continued prayers your way and as always, open ears and hearts whenever you need them. Love you!

a said...

Hi Jason and Mary Jane!

Long time reader, first time poster. :) But as the mom of a full-term kiddo who was still less than 5th percentile until this year, it really does get better. I remember leaving our 1-year WBV in tears since Felix had lost weight. Now, he's 3 1/2, a whopping 29 pounds, healthy, very active, and well-nourished. In the past week, he has eaten turkey dogs, grapes, cherries, watermelon, dinosaur palm trees (roasted asparagus), sunflower butter and whole grain toast every morning for breakfast! Definitely look forward to the list of "fattening" foods you get from the pediatrician for after 1 year--Felix LOVED homemade whipped cream, sunflower butter, and Chipotle guacamole...and I got to enjoy them, too! :) Hang in there!